I wonder if Christine realizes that undiagnosed and unsupported autistics are at such high risk for early death for a number of intersectional reasons. I would argue the harm of exclusion is greater than her irritation with inclusion
I don't think she's ever even thought about undiagnosed and/or unsupported autistics including those with barriers to access to those therapies christine got for abbey. has she realized some of us just make do and grow up anyway?
in fact she makes me so angry i'm gonna just go ahead and say i don't think christine even thinks about intersectional identities particularly poverty when she thinks up her responses, thinking they sound thoughtful.
I'm happy that her daughter was diagnosed early and got all the interventions/treatments/help/accomodations she needed. I am sad for myself and others who had to grow up desperately struggling to try to figure out how to "get by", barely surviving, traumatized, all because we were never diagnosed. And now that some of us have been fortunate enough later in life to get diagnosed (myself at age 60), she is trying to take away the validity of that diagnosis. Unbelieveable!
As a little black girl, I started school in the 70s and mostly white kindergarten in elementary school classes. I was called antisocial, and lazy, and was always punished for not speaking, not looking at the teacher in the eye, and not doing the work. I spent a lot of time standing outside the classroom door while the teacher went on the lessons for everyone else. At no time did anyone try to figure out what was wrong with me. When I showed flashes of intellect, they would point at me, saying I could do it I just wouldn’t apply myself. In junior high school, I had to have special permission to hang out in the library because the other students would beat me up because I was so strange In high school, I decided to take a drama class so I could “learn” to act like everyone else. There wasn’t one day that I didn’t struggle. Someone might say that since I continue to pass to the next grade, I was pretty much OK, I say it was because they didn’t know what to do with me, so they just put me ahead. (By the way, that’s how nowadays you get somebody in the sixth grade that’s reading at third grade level. Happens all the time.) I wasn’t diagnosed until I was in college. I decided to go to junior college, thinking that even though I was stupid something had to get in my brain if I exposed myself to it enough because I did want to learn. That’s when I was pulled out of class, examined, and given the diagnosis of ADHD. That wasn’t until my mid 20s. They weren’t testing grown women for autism then. Ironically, after that, I’ve was accused of faking it for accommodations by people who don’t know anything about me. Now all these years later, I find out that autism can be up to 50% comorbid with ADHD and the symptoms overlap. My symptoms correlate more with autism than they do ADHD. My psychiatrist says he’s pretty much 100% sure that I have it as well, but since my healthcare doesn’t cover it, and they don’t consider it necessary for adults since , the accommodations are the same. I am officially undiagnosed as autistic. But I am. According to Kristine, my struggles weren’t as profound as her daughter. I say that in some ways they were much worse. The analogy I would like to use for her opinion is somebody who needs to compare trauma, and say their trauma is worse than somebody else’s because… Her situation with her daughter is worse because she had to pay for accommodations for her and deal with her struggles. Just like I don’t have the right to look at my situation, and say that my struggles are more valid than her daughters, because I had to deal with persecution, ostracization, and no accommodations. she doesn’t have the right to invalidate anyone else’s autistic journey.
👀 When you mentioned getting put out in the hall it pretty much melted me. I can identify with so much of your story, but it was the 90s for me. I was even given my own desk to sit out there & do busy work in upper elementary & I remember getting put behind a fridgorator box in the back of the classroom for months of 1st grade. So many paddlings... all the way up to 6th grade, which was probably the worst. And that was with my momma being an English teacher at the tiny, rural school. I always wondered how much worse it would have been if she wasn't on campus.... my grades kept getting worse until I made an F for a final grade when I was in 5th grade. I got in so much trouble over that that that was when (wtf how does 3 that's make sense... I have to leave it!) I started learning to heavily mask & never made a quarterly grade lower than an A for the rest of my school days. I was the Valedictorian of my class of a whopping 15 students despite my troubled younger years. I've really blocked out some of the atrocities I experienced in elementary though... I really appreciate you sharing, so I could remember that I've blocked some things out that could use some processing. Tysm!!!
we are the same age, grew up in the same era. So much of what you wrote resonates with me, but my diagnosis was PTSD, not ADHD. I remember every weird kid at my school knowing I was more like them and nothing like the kids I pretended to be. Always hiding, never myself. I missed a lot of school.
i have one thing to say to that woman, if you really know abbey worked so hard to get where she is and had 20 years of speech therapy, LET HER USE THE SKILLS let her speak for herself because she definetely can. she keeps pushing abbey to repeat the quotable stuff and aaaaaaa
Yeah like when she says 'no, honey, we're not talking about that' to Abbey or keeps telling her that she's not responding to questions in the right way... Like, idk, let her express herself in the way that she wants to? Like I'm sure the other person can handle veering off topic sometimes, that's how conversations work!
As an autistic women who struggles with an overbearing mother, I wish Abbey’s mother would stop speaking for her. It is so dehumanizing to feel like you have no voice. Abbey is not dumb. She is able to speak for herself but her mother holds her back and makes her feel like she can’t when she can. It’s infuriating to watch because she’s showing everybody that she doesn’t view Abbey as her own person with autonomy.
So true. Having learned the fuller context of what people know about Christine. She’s definitely holding her daughter back in some ways. And she’s very misinformed about the complexities of different kinds of Autism.
Most people wont understand that even if I say it. They act like happiness comes from enduring hardship. They hear me talk about my struggle and say "well you've overcome all that so I bet you're super fulfilled and proud!" Wow, no, I'm not. I haven't overcome anything at all. I'm tired. I'm sad.
I'm exactly the type of autistic who if I met Christine today & talked to her, I would be the poster-child of "neuro-different." I'm not even a level 1 autistic either. I'm level 2. But because of the environment I grew up in, I had to put all my skill points into masking. I may appear "neuro-different," but I am nearly 26 and only just figured out how to brush my teeth correctly a few WEEKS ago. Because I had to spend all my time and energy as a child learning how to mask my autism. The reality is that I was minimally verbal until my early 20s and I still struggle with forming clear, coherent speech in my mid 20s. My sensory sensitivities give me chronic pain that was so visible & severe in early childhood that my doctor checked me for hidden injuries when I was around 5 years old. I run away from home and hide during meltdowns. The only reason I am able to work is because it consumes ALL my energy to the point I have difficulty meeting my basic needs. I often go to bed hungry because my autism consumes so much energy that I become completely immobile after only a few hours out of the house. I am rarely able to spend time with friends because employment consumes all my energy and I don't have enough spoons left to socialize. I hate that Christine thinks people like myself don't deserve community or support simply because my parents and doctors did not believe it was possible for girls to get autism unless they are intellectually disabled. I *should've* been in speech therapy. I *shouldn't* be employed. I *should* have a caretaker. Music therapy would've been *life-changing* for me. The fact I don't have these things aren't signs that I'm not autistic. They're signs that my basic needs are not being accomodated. I don't want people like Abby to be excluded. I want loving caretakers like Christine to be able to access the services Abby needs with ease. I want her to have easy and affordable access to care that allows Christine to relax and start to develop more of a life and identity outside of being a caretaker. I want these services to be easier for them to access so that level 2s like myself and my best friend who came from abusive families can access care too. So that level 1s can get the support they need. My desire to survive is not an attempt to exclude Abby. Heck, I'd *love* to be friends with more level 3s like Abby. I want their lives to be easier. I want their needs to be validated and supported. I just dont want it to come at my expense.
She does think we deserve community & support, she’s very vocal about that. But that there should be another diagnosis created for us separate from Autism
it is different and there should be support for both. Maybe 3 levels for both types - classic autism and Aspergers which is now level 1 but with a new name. The main difference in the DSM 4 was based on language development. There are similarities but it is different. @@thethoughtspot222
I wish that people like me didn't HAVE to disclose that they struggle with basic needs, or barely made it of the school system alive just so that other people might believe that we're actually fucking autistic. I'm so tired of my disability getting downplayed by people who don't know shit about what I experience and feel entitled enough to claim it's something different altogether. I HAVE AUTISM. Whatever bullshit labels they want to come up with won't change that!! (sorry for the rant.)
Fr. Like I literally only learned how to brush my teeth properly a few weeks ago & I'm almost 26 years old. While I feel safe sharing this in autistic spaces, I do not share this with neurotypicals!! And I shouldn't have to for my needs to be validated. I work very hard to present myself in a way that allows me to be treated the way that I should. I shouldn't have to lose the respect of my community just to access support. Because, let's be real, most neurotypicals will either think I'm lying or braindead if they learn it took me over 20 years to learn how to brush my teeth without giving myself cavities from certain areas not being brushed properly.
@@LilChuunosuke i only learned to tie my shoelaces at 16 💀 and to properly see the time on analogic watches into my 20s. I performed academically and professionally but my brain is being chanelled into data, setups and testing. I fail at "basic" stuff in life. Wtf Abbies mom 😂
Have you ever seen someone with a broken bone not get the care they need? I think the result is a good example of what it’s like to have undiagnosed autism vs treated. A person who broke their foot and wasn’t able to get care or support doesn’t cease to be. They keep living. They keep walking on that foot even though it’s impossible even though it hurts. Over time the bones heal in an odd way and muscles get stronger to compensate for the irregularity. It’s odd. It hurts. But it works. For someone who had years of therapy and multiple surgeries getting over their break to come tell the person who had no help that their injury isn’t valid… that’s backwards.
😢 Your chosen metaphor actually happened to my mother as a child. She grew up during the Great Depression (economic suffering that brought lots of other suffering for those alive during that time.) She attempted to learn how to ice skate without anyone to show her how, on a pond near her home. She fell awkwardly and broke her ankle. At least, it hurt so much she assumed it was. Her folks didn't take her to a doctor for it, too expensive while they were wondering if they would be able to keep the farm they owned, or have to sell to survive. What her folks did was take her to the local shoe store. From somewhere in the depths of the storage room, the store owner came out with a pair of high button shoes that hadn't been in fashion for thirty years at least. If you don't know about them, they covered the ankles of the wearer, and were closed by a series of small, closely spaced buttons, which needed a hook tool put through the buttonhole and around the button to draw the button into the proper position. In my mom's case, it was meant to act as a brace for her injured ankle. She said she hated wearing them, not only because they made her look different than the other girls in her school, but also they didn't in fact provide much of a brace. And once she had them on, she was expected to walk to country school, just like her brothers.
I had speech therapy for 3 years in grade school. My verbalization struggles were written off as being "intensely shy" or insecurity because I was "gifted." I wasn't diagnosed until 2 years ago at age 42. I consider myself low visibility support needs because I am high masking and can keep my struggles hidden, but that doesn't mean they aren't there and that I don't struggle immensely with a smile on my face.
I was just finally diagnosed 3 months ago at age 60. I never had any kind of therapy at all, but struggled intensely all throughout my entire childhood and adulthood. No one cared enough to notice my struggles, or even care if they did. I have been super high masking my whole life, so to most people I "appear" to be normal. I too struggle immensely every day of my life, often with a smile on my face to hide my pain.
i agree with all of you in this comment. i too, mask constantly and yet i still have a lot of support needs, most of which i never got my whole life. i haven’t really determined where i would fall on the “support needs”scale yet. i appreciate reading your perspectives ❤
She made herself understood during the Jubilee video. Those of us on the spectrum and our parents didn't go through the same thing that she and her child went through, therefore our autism isn't as valid to her. She's one of those autism moms trying to gatekeep the community. I'm late in life to the autism party, but I'm glad as hell that the people I met in the community supported me in my journey.
Yes…I just learned about autism moms because I saw a video and was like hey that’s me! Because I’m a mom and I have autism so that’s me! No it’s not me at all. I am a mom with autism who has kids with autism and those “autism moms” are cray cray and terrible. Like they for real are like oh I have pass my kid is so messed up and can’t figure out why other autistic people are annoyed with them
@@DaughterofDiogenes the autism moms are the worst. I found an online group called “Autism Moms” thinking I fit that as I am a mom who is autistic and could use support from my peers and the first post was a poll to vote out all the women in the group who were autistic. Anyone here know of a great group for moms or parents who are autistic?
DSM 5: comes with one term for basically one condition that was mistakenly divided before. Christine: no, lets separate them again! What does she think spectrum means?
Exactly!! It’s so weird how she’s complaining about the lack of division between her daughter and us high masking autistics- the difference is the levels. It’s called a spectrum for a reason. We all share a similar set of traits to varying degrees and varying presentations. It’s very sad to see that level 1 autistics are at war with autism moms 😅
Not to mention that they weren’t initially separate conditions at all, but rather constellations of traits according to the man who elites arbitrarily named one of the mistaken divisions after and then other elites retconned out of the DSM when even more elites got mad at themselves for not being able to figure out if they were allowed to say if he was strictly good or evil since some of them didn’t even have human psych or neuroscience training.
This video hit home for me. My younger brother is non-speaking level 3 autistic and he was diagnosed when he was two. I have recently been diagnosed with level 1 autism at 20 years old and my mom thinks just like Christine and refuses to accept that I am autistic because I am high masking and don’t struggle the exact same way my brother does. It’s very disheartening. (Not to mention my dads the opposite and he says things like “I think we all have a touch of the tism.” Like- sir that is not how that works)
That’s so hard, you’re experiencing invalidation on both ends. I’m so sorry. I hope as time goes on you find peace, community, and understanding in others at least.
I currently intern at a methadone clinic and most of the people who come in are (unfortunately but not surprisingly) homeless. I completely agree with you when you brought up that a good amount of these people are very likely disabled and/or autistic. Besides the immense amount of physical health problems they face (which goes into how this connects with addiction and homelessness) that could be caused by undiagnosed autism or other disabilities that they have no idea they have. I genuinely wish we had more conversations about this.
There’s so many aspects of autism that has yet to be explored conceptually let alone within research. Such as, how does different drugs affect autistic brains+neurology?? There’s still so much to explore. And it all starts with conversation about it. Thank you for your input, definitely something to further think on.
Yup I'm a level 2 autistic who doesn't have access to a proper support structure and ive been homeless more times than i can count. On top of the struggles with employment, many of us cannot get roommates off craigslist or anything because we are often immediately rejected for being different and giving off "weird vibes."
@@thethoughtspot222As an autistic woman with substance abuse problems, from my experience I believe that for many autistic people, substances act as a “normalizer.” When I drink, I don’t “act drunk,” I act more neurotypical. Which is also why it’s so hard to give up even though I know I am harming myself. The way it almost takes away my social anxiety completely is so devilish and enthralling because I know how I’m killing myself slowly. But the “benefits” are too attractive to let go easily. It’s a terrible, depressing cycle.
Well said. This made me cry. I was diagnosed last year at 26 years old. It is very insulting to me to hear someone who as she says has been involved in the autistic community for 20 years saying that i and people like me shouldn't have been diagnosed with autism. My diagnosis made everything I've gone through make sense and it has helped me to be kinder to myself and not be so hard on myself. In many ways it has saved my life. No, I did not need speech therapy but i did need help specifically on account of being autistic and I did not receive the help that I needed. And that does not take away from the hard work that Abbey undoubtedly put in. Thank you for speaking so articulately and compassionately about this. I love hearing your perspective on things.
I hate the argument that the "spectrum is being diluted/widened" bc it was never that narrow to begin with. I was diagnosed in 2006 at around 3 or 4 years and im a low support, afab, verbal, motor and intellectually privledged autistic person. It was incredibly rare for someone who presented like me to get diagnosed so early, but I did get diagnosed because I FIT ALL THE DIAGNOSTIC CRITERIA!!! the only difference between then and now is that there is an exponentially bigger amount of awareness on how autism can present in minority groups and low support autistics which i think is a positive thing. Also, even as someone with minimal support needs who's probably the kind of person christine is describing, I still struggle in ways i notice my allistic collegues dont because it is a disability.
I didn’t know I was autistic and had adhd as a child and it was difficult as hecc. I am now a 25 year old man. I do remember three teachers in my life that did so much for me: One teacher who let me draw in class, because she knew that I needed to do it to regulate. One teacher who treated me very kindly and calmly, maybe not understanding exactly what I was going through, but they saw my meltdown during sports and they always asked me if I didn’t want to do something and tried to accommodate my needs. And then one teacher, who actually contacted a psychologist, handed me the email address and the number in private after I had to leave class because of another meltdown and calmly spoke to me about ADHD and autism and being so kind and patient…. I was incredibly lucky! There were bad teachers too, but these three I will always remember. And I was LUCKY! I know people who haven’t had that kind of support and they sadly are no longer here, so hearing Abby’s mother dismiss autistic people like that is making me very angry.
It still sounds like Christine doesn't understand the concept of comorbidity? The other disorders that come along with some people can be why they are higher support needs in many cases. I wish she'd champion the related actual diagnostic terms like Speech & Language pathologies instead of assuming autism isn't autism without those other diagnoses.
Exactly. I suspect her daughter has an intellectual disability - correct me if I’m wrong. But the things that she defines as autism in her own head are mostly things that are due to the intellectual disability, not even autism itself. Not talking isn’t even in the autism criteria, it’s in the intellectual disability category. Theres the separation and recognition she’s looking for right there. Her daughter has a different diagnosis than a level 1 autistic person already.
I was hoping someone else was thinking this also! I hadn't heard of "Communication Disorder", so I decided to look it up and found there's such a thing called Social Communication Disorder. There's been plenty of discussion surrounding how that's _not_ the same as autism, despite some of the similarities and the possibility for comorbidity. I hope she takes the time to do some research on the topic!
Yes! How many “level 1” autistic people have invisible disabilities and how many “level 2/3” autistic people have more noticeable physical and intellectual disabilities? It’s almost like it’s not about how “profound” the autism itself is …
I grew up in a home with parents who didnt believe in mental health issues, and i was homeschooled. I nevrr got to opt out of anything no matter my feelings. All my negative feelings were responded to with "too bad". Ive always had to push myself beyond my breaking point my whole life. I never got treatment, i never even got a diagnosis until last year (31yo). But i guess that doesnt count to christine. Edit to add; i didnt even get to "stay home sick". I did school rain or shine sick or healthy. "suck it up"
@frybabyofficiak I feel ya. 💔 In the 90s/00s, I attended a tiny, rual school where my mom was a teacher, so I got similar treatment. It's been so challenging to navigate my relationship with my mom my entire life... I never understood why I had such negative feelings toward the person I thought I 'should' be closest to when there was no obvious 'reason' for me, quite honestly, not to like her since I was a toddler. I carried so much shame, guilt, & confusion about that for over 30 years. I know all the pressure to mask & overachieve academically was due to how my parents were raised by their depression era parents & they were just trying to push me to be able to succeed, but it was turamatic, to say the least, & being able to accept that it was has been absolutely healing. I was the last graduating Valedictorian of my school before it was consolidated, so not being able to 'be a functioning member of society' once leaving my parents was so incredibly confusing for over a decade. I don't know if we'll ever be able to get over all those years of invisible suffering, but at least we can understand a big part of why it happened.
for sure! People like Christine don't understand abused and neglected autistic people. She only thinks there is one way to look and be autistic and it's so insufferable.
Yup, my parents even believed autism was a sign of a spoiled child who was not receiving proper discipline. If I tried to opt out of anything or expressed discomfort at anything, they would just push me further past my breaking point, then punish me for breaking. There were times I was so clearly overwhelmed and shutting down from school that I was sent to the nurse's office & my mother was called to pick me up, only for her to say "if she doesn't have a fever & she isnt throwing up, send her back to class" and hung up the phone. I seem fine because I was repeatedly broken as a child until the point that "mild" suffering feels blissfully relaxing & free.
Oh wow your childhood was really similar to mine. I grew up around a family like that too where any weakness was punished. I've been suspecting autism for honestly like 10ish years and now that I'm 30 I'm barely coming to terms with the fact that, like... yeah, that's what it is. I tend to push myself to breaking point too. I really don't want to. But it's such a deeply ingrained survival mechanism and I go through life with so much anxiety that I can't really shut it off.
I can only speak on this issue as an allistic person. Christine seems to be fighting for validation of her daughter’s experience which is something that was referenced in Thought Spot’s reaction videos. I feel like Christine doesn’t want her daughter’s experience invalidated by others getting diagnosed, but she doesn’t see that she’s invalidating thousands of other autistic people by platforming her opinions (which are based in emotion) on social media. She is spreading misinformation and causing heartache. The conclusion I’ve come to as an allistic person is that allistic people have no right to define or label the autistic experience. The lexicon we use to describe autism needs to come directly from autistic people, not their allistic relatives and friends who have opinions. There needs to be a space where autistic people create a community based solution without interference from allistic people.
Agreed. Especially for the DSM. Why are we still diagnosing autism and other developmental disorders based on neurotypical perceptions of us, which are often inaccurate? Like how they still believe we have no empathy or we can’t learn new skills. How about doctors actually start listening to actual autistic people about our internal experiences instead of defining us based on their biases and stereotypes?
It is hierarchical thinking. Christine spent all this time and money to help her daughter present as less autistic. In her mind those of us that are high making didn't need all of the therapy to be "normal" so we aren't as disabled as her daughter. Since her daughter might have alexithymia perhaps they do not communicate much about how she experiences her autistic world and the challenges it gives her. It is a very old school view of the world, that disabilities must be seen by others to be real. I could list all of the ways autism limits me but because I am highly verbal I am not as disabled as her daughter. It is really unfair to all of the autistic people that forced themselves to overcome difficulties without therapy because they either did so or they didn't survive. The prisons are filled with autistic people. The streets are where we often live. And when it gets too much we end it, lots of us are not surviving in this life.
@@karenholmes6565 Thank you for your response. The truths you speak about disability provide much more context than I did and go deeper than any statements about the harm Christine is creating as just being a generational issue.
"Not everyone has the luxury to be disabled"... This might be the most accurate and distressing statement to ever be said. As someone who struggles through life having constant meltdowns because of work but not able to be unemployed, this hits home. I wish I could "opt out" of having to work just to survive.
I appreciate where she's coming from. She and Abby have clearly been working super hard. All their work doesn't need to come at the expense of others, though. This is the opportunity to bring more people in. She could be such a big help with everything she's learned, but instead she's trying to gatekeep.
Agreed. I see the love Christine holds for Abby and the hard work that that they both put in every single day deserves praise. But that shouldn't come at the expense of others, especially those whose support system did not accommodate any of their support needs. When I advocate for better access to support as a medium support needs autist, I'm not just fighting for myself & for low support needs autistics. I want Christine to be able to access the services Abby needs virtually effortlessly.
The "just because they had to doesnt mean they could" just made so much click. I struggled badly and slipped into depression by the time I got to highschool and NOW I realize I started to get less help/assistance as I got older because my parents thought they were giving a neurotypical child independence. The less help I got the more overwhelmed I got, I was tasked to cook and fend for myself at young age which led to burnout. As a Black neurotypical woman I was struggling (and still am) to keep up with the real world. Sidenote: I loved your expressions in this video, I getmore expressions when I'm frustrated and passionate about topics too. 😂
I am very excited for this intersectionality discussion. You have great content. As an autistic guy who is less than 1 year into my diagnosis, your content is riveting. Keep up the good work. I feel seen.
I’ve been known to say, “I would love if all my experiences as an AuDHD individual were brought to life through love, support and affirmation. Unfortunately it was brought about and met with abuse, neglect, a dismissive attitude and disdain.” I’m really happy for Abby to have been able to experience their life with support and compassion coming toward them in regards to their differences and deficits. I wish that for all autistic people. There’s just so many of us who didn’t have anyone around like Abby’s mom or didn’t have the resources Abby’s mom has had access to. I hope this is a turning point in that story though. Thanks for this video ❤
Agreed. Like I dont like Christine, but at the end of the day, I recognize she is a mother who loves her disabled child and is doing her best to accommodate her needs and is simply failing in some areas due to a lack of education. I'd pick having Christine for a mother over my own mother who tried to beat the autism out of me for nearly 20 years any day of the week. I empathize with the fact she has struggles I'll never experience, but I *also* have struggles she will likely never face as someone with parents who went out of their way to remove any accomodations I had and attempted "cure" me with "exposure therapy."
Yes, as a 53 year old woman who was not diagnosed as a child nor accommodated I did acquire a dual diagnosis of bpd and bipolar 1. I strongly believe had autism/adhd been recognized early these acquired mental illnesses would not have been something I would have been also challenged with. But indeed to be in a world that is not made for me and schools not made for me, my life up until retirement at 50 was unsuitable. I am now able to accommodate my needs and my mental health has improved to the point of not requiring psychiatric help or medicine.
Im almost 26, and recently my dreams have become very similar to each other structurally and always include elements of kindergarten/schools/hospitals/apartments/houses and various everyday shit i have/had to deal with daily, responsibilities, and then mixed usually with internet and some supernatural-cosmic-sci-fi-anime-games stuff here and there 😂 I'm almost always Me and almost always aware of the dream. So, for me, nights are kind of exhausting. And i am often stuck between not wanting to be awake and conscious and not wanting to go to my dream purgatory again. I know, realistically, i just need to fill my head with other better stuff.
Funny thing is that I am a level one autistic diagnosed as pdd-nos at 5 years old. I went to an “autism” school as Christine describes, I had OT and was apart of a social skills group run by a speech pathologist. But to Christine I am not autistic because I hit all my developmental milestones early and have a bachelors degree in Communication. My autism really affects my life. I am 28, still live with my parents, and only now have my first job interview ever on Wednesday for a video editor position at a local university. I wish Christine would stop the infighting, because despite Abbey having more needs than me I can relate to her a lot. In the jubilee video when she mentioned not knowing how to have conversations with other kids as a kid and would have conversations with herself in her own little world, I would do that too. One of my best friends from middle and high school is autistic and couldn’t speak in full sentences until she was five and that doesn’t make me any less autistic because I spoke my first words at 10 months , or my friend any less autistic because Abbey might’ve took longer than her to speak.
Fair enough! I just watched it and now have an intense drive to engage in my special interest while pacing and bouncing around to calm myself down. Unless you want to feel the rage of invalidation, don’t watch. ❤ Take care of yourself!
I think I read a comment on one of your videos which helped me understand the spectrum better. If I remember correctly, the person compared it to eyesight problems, explaining that there aren't blind people on the one side, and people with perfect eyesight on the other. Some people might need reading glasses, while others will never be able to see certain colors... You wouldn't deny glasses to someone because other people can't see at all. And thinking back on what you said in this video about different access to diagnosis or accommodation... people who didn't get access to glasses early enough will have less chance of succeeding in school or get very debilitating migraines. I'm glad I live in a country where I get to wear glasses even if I could manage without. (Unfortunately, even if i'm able to see people's faces from a distance, I'm still terrible at recognizing people I know if they aren't in a context where they are supposed to be 😅)
Using deficit based language for your own kid is also something I don’t love. Like autistic people using deficit language for themselves is fine, but it’s giving Autism Mom and I hate it. She’s like oh my daughter is “really” disabled and these new ones aren’t. I hate it here. This lady is pissing me the hell off. It’s such a privileged perspective, and such an out of touch one.
I desperately needed the help that this woman's daughter got and didn't, but now I'm apparently just part of a wave of qUiRkY women getting diagnosed with autism for funsies so that we can devalue her daughter's socially constructed title of "functions fairly well but is *actually* disabled". Because I don't see how others finally getting their disability recognized is some sort of attack or takes any sort of resources away from her and her daughter. It's all about "stay out of my exclusive club that I got into by having money", which worries me that the underlying anxiety is about some sort of money stream.
This. It's exactly this. The Netflix show isn't enough for Christine, not enough support and privilege for Christine, she just has to use the platform handed to her to try to negate the rest of us whenever all we call for is inclusion with research, care, advocacy, community etc. No, people like Christine don't see that as important because she feels it infringes on her (it does not). I'm willing to bet she applies this type of thinking to other areas of societal/cultural topics.
when i was little i did OT and music therapy. i had no diagnosis but i was having developmental delays and behavior problems. i was diagnosed until i was 14 (two years ago). i bet christine wouldn’t think i’m autistic. but i am! i struggle every day with communication, i’m currently on the wait list for speech pathology bevause i have a lot of issues with sarcasm and idioms. but we are all different!
It's good to know that Abbey's mother was fortunate enough to have the privilege to give her 20+ years of speech therapy and music therapy and the like. That being said, I wish Christine could show more compassion towards people who didn't have that privilege.
I really appreciate your kind and understanding approach on things like this. I think its important not to demonize people like Christine, because it allows space for her to feel safe considering other view points, as long as we're not harassing her, and we're meeting her with the kind of genuineness that you do.
I’m with you on a lot of what you said. As someone who has debilitating health issues and comorbid mental health issues as an adult due to having to mask and cope in this world with no help or instructions on how to do so healthily, wanting to be not be alive for so much of my life, I’m really upset about how insensitive she comes across as. How can she just assume and generalize our experiences like this!? I’m not just “different” - I have had a deficit this whole time and I’m suffering now. Now it’s not just a deficit but a disability because I cannot work at all. I can barely function. I’m so upset at this.
It's crazy because SO MANY late diagnosed/late realised autistics look back and think about how much better their quality of life could have been if they were given those sorts of accommodations and therapies. Just because we weren't given them doesn't mean we didn't need them or wouldn't have benefitted from them.
also, what about autistics whose needs change over time? Like someone who used to be nonverbal, in special education, needed therapies, etc. but is now able to verbally communicate and comes across as allistic to the general public (through masking)? Does she want them to then lose their diagnosis? Or are they still valid because they did need speech therapy...? like???
@@elevenoutof10I have a nephew who was speech delayed, nonverbal at three years old. Then he started to talk, a little. But when he got to full sentences, we realized he was quoting bits of scripts from his favorite kid's movies that he watched at least once a day without fail. Echolalia. He was sent for instruction in the local school system's autism program as a very immature four year old. He transitioned at midyear from this class directly to first grade. I was astounded, remembering my own social struggles in a normal 1960's kindergarten. As a 5 year old (barely). Back then, kindergarten wasn't about academics, it was about figuring out functioning in groups without harming each other. I probably got a low score on that. One of my former classmates still bears a small scar I gave him in retaliation for being bullied.
I’m also level 1 and struggled so much in school. I honestly gave up on academics and went super hard on my special interest (Flute.) I remember in the Jubilee video when Christine started going off about that if you can drive, have a college degree, live independently, etc that you shouldn’t be labeled as autistic. Yes, I have a degree, can drive, and live with my partner, but it’s been a huge struggle. I didn’t get my diagnosis until Fall 2022 at the age of 30 so I thought I was broken my whole life. I had no idea why I would have meltdowns in auditions/orchestra rehearsals, despite loving music. I also had no idea why I would lose friendships, why I was labelled as “overdramatic,”why my lows were low and highs were high. I never knew why brushing my hair would make me cry, why I hated sarcasm, and why I had a hard time learning. Sorry for the rant and awful grammar, I just have so many thoughts and feelings swirling around. Basically, there are lots of different difficulties and deficits autistic people deal with. We shouldn’t invalidate any autistics and we should listen to autistics who experience/process the world differently from us. I hope we’re able to be more united within the autistic community ❤
You don't have to apologize for ranting about your autistic experiences and stuggles! this is a safe space for all autistics and neurodivergent individuals :)
Here, here! This is the one place you don't have to apologize for rants! Honestly, I'm starting to get a bit wigged out about how much sensitive/personal background I'm in effect giving to g..gle about myself.... but it is what it is & it's helping me & hopefully helping others, too. I guess it's really the internalized ableism... _"They're_ gonna find out I'm not right in the head!" 😝
@@EmilyFPC😊 I definitely had similar thoughts before the word autistic entered my vocabulary, and the thought that might be why my life has been as it was.
Going non-verbal is extremely frustrating and debilitating, I don't usually have meltdowns but not being able to communicate gets me very close to having one. My brother (whom I live with) gets irritated and don't understand, and it's so hard to talk about this and explain it to him. "We shouldn't measure our autism by our struggles" Thank you for this ❤I'm not diagnosed yet, but sometimes I feel like I can't be autistic because everyone seems to suffer a lot more than me. I know that's not a good comparison point, I'm trying my best and hearing you say that was very validating, so thank you.
15:58 this is actually a reason why i have had so much self deletion thoughts and even attempts, bc i felt like i couldnt survive it. But i was lucky to survive it. If you set the bar at surviving, that can mean you need an autistic person deaths to take them seriously if they didnt have all the help they needed. I was forced to talk. To learn it all by myself, still struggling. I always hated talking... It hurts
It does hurt! Yes emotionally, but sometimes physically, too. Forcing myself to speak in a shutdown/ selective mutusm / catatonic state is so incredibly painful just below & around my vocal cords!! Is that talked about? Also, it's so embarrassing how little control I have over my voice in those situations; some ridiculous pterodactyl like squawks that are barely intelligible will come out. It's like your trapped in or betrayed by your own body. I wish more people could understand what it feels like to experience that. To know what you want to say, but physically not be able to. When it's not to a breaking point (so like any time I fear conflict or something tense has happened from my perspective) I usually have to say what I mean with different words as a work around after an akward pause. Except I then have to over explain in order to kinda get back to what I meant bc I realize the person isn't really getting the message I truely wanted to send to them. I'm pretty sure that's a factor in my large vocabulary that I know is a common autistic trait: saying things in an odd manner, or in an old fashioned way (as Orion Kelly pointed out in today's video). It's like mental gymnastics just to ask for someone to pass the butter. I'm not even kidding. It's over the simplest requests that would in no way be inconveniencing the person. I just do without usually. The sad thing is that now I can see that my inability to convey the most menial of my needs is in effect hurting my relationship with the person WAY more. So even though I am in fear of harming their opinion of me, I'm now simultaneously aware that being unable to communicate is what is actually damaging how they view me.... I just seem like a shell of a person & they don't stick around.
This is something I say all the time. If we need to die to prove our needs aren't being met, they never will. The stress of attempting to perform at a neurotypical level quite literally caused me to suffer from a handful of mini strokes in my teens. The fact I am alive now is a miracle that came down to the size and density of a series of blood clots. Apparently, because the blood clots were small enough to not be fatal, I don't need accomodations and I'm just "neuro-different."🙄 I also feel you on the speech thing. Was minimally verbal my entire childhood. Only spoke when I had to & said as few words as possible. Only reason I taught myself how to speak was bc I was constantly treated like garbage for not speaking. I'm in my mid 20s and unscripted speech still regularly comes out slurred and unclear. Many people in my life think I'm this chatty, charismatic comedian, but I only do that so they see me and treat me the way I want to be. When I unmask, I stop speaking almost entirely and get frustrated when people try to talk to me.
@@EmilyFPC Yes, I relate to the forcing talk when shutting down. Also, sometimes when I look at an object (like butter on the table) my mind forgets the word for it because I am seeing it. So I point at the butter because I temporarily can't remember the word. Then people say that I am being rude for pointing and not asking for it to be passed at the dinner table. Agh!!
@@Catlily5 I can feel ya there! "On the tip of the tounge" happens to me suspiciously often & I suspect could be a demand avoidance symptoms for me. It's like my brain to mouth connection is taunting me: _"Oh? You want to spontaneously talk about something or someone asked you about something your are in fact excited to share/info dump the answer because you know it well? Hah, Suprise!!! You are not allowed to access the file cabinet in your brain that contains that simple word you've known since toddlerhood! And, you cannot Pass Go until you remember the word because You Do Know It, don't you?.... Try answering their question/complying with that demand now! Muahahahaaaa!!!!"_ 😈 It leaves me feeling like such an idiot... like how can I do (more like _used to do_ ) complex mathematical calculations for fun but not remember the word butter right now.... 🤯😵💫😔 Those gaps in our skill set are a very real thing & it's ok! 😛☺️
Neurodifferent and neurodeficit is giving the same vibe as high and low functioning. We stopped diagnosing people by their deficits and started diagnosing them by their support needs for a reason.
I am level 2 so where would I fit in with that division? I am not neurodifferent. I am on disability. But I wouldn't be severe enough for her neurodeficient category.
She has a very narrow perspective on autism. I have learning disabilities. Sensory issues. Motor problems. Cognitive issues with emory and behavior. Processing issues. She is really looking through a fixed cilinder at autism. P.S. what is her problem? . Why is she gatekeeping autism. Why exclude those with symptoms that are less immediately obvious to others. Someone can appear totally normal for 8-9 hours a day and become dyfunctional and crash at home. Until they cant function no more for that 8 9 hours at work.
My feeling is, that she needs people to validate HER specific struggles as a mother to a high need child, because it will counter her feeling of ‘loss’, that her beutifull girl ‘derailed’ her life by being ‘deficit’. Many parents do the same work she does, and don’t need to swim in praise to cope with that. Invalidating others to validate yourself is both ineffective and isolating.
I wasn’t diagnosed until I was 32, and it really only happened because someone noticed in my history that I had struggled hard and consistently my entire life, and they wanted to hear me out since the autism assessment was technically “inconclusive”. After much discussion and further evaluation, I did end up with a formal diagnosis. After that (and still to this day) I had to mourn the life I could’ve had if I’d been diagnosed earlier. My life has been MISERABLE due to my neurodivergence going unnoticed my entire life. Even now I struggle daily (being forced to work full time will likely put me in an early grave if I’m being honest), and it’s partially because I’m constantly having to fight against the (for lack of a better term) ignorance of people like Christine who think that my outward ability to “function” in society means life isn’t painfully difficult for me.
I don't even know how to exactly explain how this is so infuriating. I am in my mid 50s now, but I grew up in a literal cult, where we wouldn't take people to the doctor even if they were dying. In the 1970s, I was spanked at public school for stimming and shutdowns. At home I was beaten for emotional disregulation and being annoying As I started doing poorly in school, instead of getting help, I was pulled out and homeschooled. Somehow I was able to graduate via distance learning, which back in the 1980s was not done electronically. So, I don't doubt there was some fudging involved in getting that diploma into my hands. I tried to go to university and was able to squeak through two years and get my AA, but I did have to beg for some grade changes. Because I was not allowed to have friends outside the cult (even the college that I went to was associated with the cult - there's a netflix episode re the cult and univ), when I was told by my family that I was an adult at 20, I was out and on my own, literally - alone. I first lived in my car, but was able to find a job at a pizza restaurant. How did I cope in the 1980s as an undiagnosed autistic person on there own: drugs and alcohol (something I still struggle with) Eventually I was able to have a desk job bc Im good with numbers. Finally I met a spouse that financially has taken care of me, until now... he's dying, im old, im autistic... and I don't even understand how this lady Christine cannot understand there are people like me and so many others that literally fall through the cracks... listening to this is very disturbing. I want to scream!
I am homeless, on disability and autistic and have struggled my whole life as I wasn’t diagnosed until I was 50, but nobody would know it to look at me because people tell me I don’t “look autistic” 🤦♀️ but most of my struggles are not seen by anyone else because most of them are inside my brain! Except for the very embarrassing meltdowns and social deficits, but to most people I just seem “quirky” or weird. I tend to isolate a lot as it’s easier and it’s how I recharge my own batteries so I can handle social interaction in small doses. I’ll isolate for weeks leading up to a social occasion to “prepare” then isolate again afterwards to recover. Do the people who see the bubbly, outgoing person I am know that? Nope! Masking is EXHAUSTING! Plus I always overshare, talk too much, have face blindness, can’t look people in the eyes and usually end up kicking myself with shame for never “getting it right” when I’m humaning and being made acutely aware of the fact that they all think I’m weird. On camera on my TH-cam channel I get to have chats without the pressure of these things so I really enjoy that. I only recently became monetised, so I’m hopeful that will bring in a small but much-needed supplement to my income as I’ve failed at every job I’ve ever had. I sometimes go busking for extra money, but it takes a lot of confidence to do so and sometimes I’m just not up to it. I have zero support from my family who just think I’m an awful person (you made your bed, now lie in it types) and have just had to learn how to cope on my own because I had no choice! It’s hard to explain my limitations to people and I prefer not to, so that makes me prefer being on my own too. Does this make me less autistic? No! I had no choice but to muddle my own way through life!
We all need to expand our awareness and cross the divide between us. Fight the good fight, not each other. Christine seems to have a helicopter parent mentality. She has to realize that protection and coddling are not the same. That said, how we express ourselves and the terms we define for ourselves, officially and personally, are valid. I think they can become interchangeable and distinct for everyone on the spectrum. Experiences are vast and changing. It makes sense that our definitions can adapt, too. Sometimes, I'm nonverbal because of too many stimuli. Sometimes, I'm nonverbal because of the masking and preparation that takes a toll on me. There is no fast and convenient answer all the time, only diversity. I liken autism to a rock. Some of us are more permeable than others on the spectrum, but that does not mean our experiences should be put on a superficial or judgmental scale that sets us apart. Our nuanced differences need concrete diagnoses to cope with the difficulty of typical processes and ways of being. It would be interesting to see Irene interview Christine.
Two recent videos that hit me profoundly and were validating for me with my late diagnoses of multiple syndromes and disorders. - Changes in the concept of Autism - Gresham College - 2023 Connecting the dots between autism, adhd, dysraxia, EDS and More - The Ehlers Danlos Society Titles aren't exact, but both released late March 2024 on channels Gresham College and The Ehlers Danlos Society. Found then validating and was willing to send the links to immediate family for increasing their limited or non-existent awareness.
CW: I have an official adhd diagnosis but my father does not believe in psychotherapy, so it was untreated until I was 18. Multiple doctors recommended testing and medication, but my father was too embarrassed to have a child with a mental disorder. I saw a psychiatrist once when I was 8 after expressing suicidal thoughts. I struggled so much in 6th grade socially that my parents decided to homeschool me for a few years until high school. I started “treatment” from a non-licensed Christian “therapist” in high school before it got bad enough to warrant an actual doctor. After initial diagnoses of anxiety and depression at 18, I was diagnosed with ptsd then c-ptsd in college. I’ve had multiple hospitalizations, only one of which was voluntary, which resulted in PD-NOS, then BPD and bipolar. After 15+ years in therapy, I finally had my new therapist ask if I’d ever considered I might actually be autistic. I remember when I first had a diagnosis of ptsd, I struggled to empathize with anyone complaining about things that (at the time) felt minimal compared to the trauma I felt I was experiencing. But that was a really unhealthy way of conceptualizing what is valid. There’s a phrase people use a lot to minimize others’ experiences “there are starving children in Africa”, which, yes, is true. But that doesn’t make my need for food today any less valid. I’ve definitely raised an eyebrow before when my coworker (with the most incredible executive functioning skills I could imagine) joked about being ADD because she paused to read an email. But I don’t know her experience, and I don’t want to gatekeep it if it would prevent her from help she may need and be hiding.
This has begone to be some sort of weird competition for who's the most miserable, get the most attention on social media and winning the autism (sometimes I think if that was this easy, I would've forfeit my autism long ago). Maybe because today hasn't been a good day, but I can't say I could take so much bs and get something constructive out of it, or even tried to appealing to these people having dogwater opinion then going with it as if it was fact and having this need to invalidate other experience of autism or struggle just because their feelings says so, I think you are a courageous and very tolerant person.
Agreed. Although how we all struggle and are disabled by our Autism is so important to talk about, I believe talking about other aspects of our lived experience is what is ultimately most important. It's also more humanizing.
I really get what mean but this is tiresome, even in my close family I hear some kind of varient of that stuff again and again, sometime from "that" same person believing this all made up or saying you an adult now and that a you problem with some guts you have to "get over it". Sorry I know I'm ranting.
Im AuDHD ~ not officially diagnosed Autistic, only got my ADHD diagnosis 2 years ago at 22. I had significant issues with being recognized as needing support...but I was continuously bullied, even by teachers, family, and healthcare professionals about my neurodivergent traits and needs. About a year and a half ago, a therapist that I was only able to access because it was publically funded, tried for over a year to get me connected to OT for sensory issues (bc she recognized & accepted my Autism)....and the people running funding/service allocation just decided I wasn't a priority. Just because I didn't have a diagnosis ~ despite the fact I was having severe bowel issues from not eating & stress, sensory meltdowns & shutdowns, burnout from attending classes everyday (bc my college also refused me accommodations for part time study), having migraines and other neurological issues (like unequal prolonged pupil responses and tingling/ numbness/weird blood flow changes to my extremities), chest pain & abnormal changes in heart rate, etc.... A great combo of Autism + stress + trauma response 🙃 That's just this last couple years. It sucks to say that honestly I've been through worse so them denying me this basic support was not even a surprise really. I had to self-accommodate to survive....and without support from my Autistic partner & best friend I would be dead. My life was hell & I was honestly suicidal on occasion. ^But again, not my first rodeo. So I just had to...survive...somehow. The reality is support for Autistic people is just nonexistant. The funding is not there unless you have connections & privilege. My brother was diagnosed at 6 as 'moderate-low functioning', and my mom tried to get him transferred to a disability-oriented school. He was visibly disabled and it still didn't get him the supports he needed. He was also bullied by peers and teachers, and had minimal funding to get the services he needed. Being low-income my mom couldnt afford to shell out thousands a month to pay for everything he needed in professional supports. The problem is ableism; like you said ~ it doesn't make sense to her bc she is living in an ableist worldview. In order for her to justify her position, Autistics who are worthy of support get it and look like XYZ. People like myself, my brother and others with similar experiences just...can't exist.
This touches on something I have been thinking on, and am profoundly struggling with. A mild conflict with a friend showed me that they don't actually know me and we don't give eachother the opportunity to do so - because they have a very binary view of what autism looks like, and because I mask so heavily. But I have no choice. It's a catch-22. If I'm open about my struggles, it scares people off - understandably so. And it's nobody's responsibility to integrate me. But at the same time, when I myself can't carry the responsibility to care for myself and I don't have actual access to support... Then who does? In order to gain access to support, I'd already need to be receiving it. But I don't, and I don't. And so I'm left behind. So, at what point does your struggle actually become real? At what point have you suffered enough to be valid? When you take your own life? Just because I'm alive, barely, doesn't mean I truly survived. "Just because I had to doesn't mean I could." I simply never had been given a real choice.
I feel you. Im alive, but I'm broken. I almost gave up in my teens. I almost died in my teens not just from an active decision, but from mini strokes I suffered from the strain of being forced to perform at a neurotypical level. So because i found someone to talk me out of it and because the blood clots in my brain were small enough to be broken apart by the pressure built up behind it, I don't need support? That makes no sense to me.
Wow. I was also giving Abby's mom the benefit of the doubt after that jubilee episode, but after this one, I have chosen my side. She is a huge gatekeeper who really seems to have no idea about any kind of autism except Abby's. Just because we don't have a severe speech deficit doesn't mean we don't have other severe deficits. She needs to stop trying to gatekeep autism support from others who need it besides her daughter and people exactly like her. There are all different types of autistic people out here struggling every day and she isn't helping us by being so persistent about how only people in speech therapy have autism and the rest of us are just, what? Faking it?
Also, I 100% agree about not having access to help. I am late diagnosed, and there was no option for me to NOT go to school. Instead I had nightmares and threw up and cried and had meltdowns all the time and my parents said I was a bad child and I had to keep going to school and then work while struggling inside (and having meltdowns and nightmares and throwing up and crying), wondering why it was so hard for me. I really wish I had had someone to advocate for me and give me the assistance I needed. I would have taken that key and opened my cell a long time ago too. 😢 I have terrible PTSD just from trying to keep up with everyone else and fit in my whole life (and the mental abuse from my family for being the way I was). I was thinking of "opting out" when I decided to get therapy and found out I'm autistic. Now I feel like, knowing that, I can keep trying and see what life is like with this knowledge about myself instead of quitting. My "opting out" thoughts have quieted a bit since then because now I know I'm not the only one feeling like this.
@@m.r.228 💯 agreed! P.S. totally beside the point, but I'm glad I'm perhaps not the only one who rereads & has to edit their comments... 😅 esp long ones. I've made myself copy, delete, recomment, & paste about 95% of the time & very recently I'm realizing how ridiculous it is that I feel compelled to do that. So what I wanna fix my comments, I don't need to hide that!
Also some of us had severe speech deficits that we outgrew! Cambridge's youngest black professor is autistic & didnt learn to speak until he was 11. Didn't learn to read until he was 18. He looks "normal" or "neuro-different" now! I also definitely needed speech therapy as a kid. I was minimally verbal until my late teens/early 20s, but did not have access to speech therapy & learned how to speak on my own. An ADULT being able to speak clearly & neurotypically is not necessarily a sign that we did not need speech therapy as a child. Many of us did & never recieved it.
@@LilChuunosuke😊 My mom, having been an elementary teacher before she met dad, made time to read out loud, in the firm belief that her own command of language and tone expression being given as frequent examples would make it easier for me to do the same as I grew up. That was the only "speech therapy" I got. That, and she had me reading out loud to her at proper grade level comprehension. One of my nephews was speech delayed, but after early intervention, he became hyperlexic!
@EmilyFPC Edit loud and proud! Lol! I constantly find mistakes in my writing, no matter how hard I try to make it perfect the first time. I never thought to make a draft elsewhere and then post when it's perfect. Not a bad idea! Especially for platforms that don't allow edits. I'll have to try that sometime.
I am now 43. I was diagnosed at 39 in 2020. I’d been through chemo the year before for stage 4 uterine cancer and I went through a full hysterectomy. In 2020 I was talking with a very distant cousin and we learned something traumatizing that had happened to us both as children. After that, I suffered a complete psychological breakdown and checked myself into a psychiatric hospital. While there the nurses exhibited “peculiar behavior” from me and said, “you forgot to mention you’re autistic”. I looked at them shocked and dumbfounded but curious. I’d always suspected I might be autistic but I didn’t “look/act” like how media portrayed autism. They assessed me and said, “you meet a lot of the criteria to diagnose you with autism spectrum disorder”. When I tell drs I’m autistic, I immediately get the, “no you’re not you can’t be, you communicate really well and can hold eye contact”. I then tell them that is masking but it’s very difficult. I rehearse my appts before going. I even rehearse conversations for people I haven’t seen in decades but what if I run into them at the store one day. I’ve eaten the same thing since middle school. If I’m in public and a fire alarm goes off, my hands cover my ears, I start having an anxiety attack and squat down into a fetal position wherever I am standing. Interacting with people outside of my immediate family is excruciatingly exhaustive…mentally, emotionally and physically. As a child I was considered a free spirit cause I did my own thing. I’d spin around standing in one place several times a day. I flapped my hands, I walked “pigeon toed” and was put into ballet at 3 to “correct” my feet. All it did as make me self conscious and give me bad feet, but I did love ballet. I’m back to walking pigeon toed. Lol😅 In the 80s and 90s there wasn’t a lot of talk about autism. And despite suffering academically from about 3rd grade to 12th grade, my parents couldn’t afford medical bills much less a tutor. Not to mention they were consumed by their toxic marriage. You mentioned how many autistic people went undiagnosed and ended up ending their life due to the struggles and I relate to that so much as I had had multiple attempts. How many people have lost their lives due to not being diagnosed properly? That is very sad to consider.
I didn't get diagnosed until I was 36 because I was a "gifted" child and my brother had more "profound" behaviors. I received no support for my needs and was instead labeled as difficult, emotional and sensitive. I can say that being undiagnosed TRAUMATIZED me and I am still repairing my self esteem.
While level 1s talking over Level 3 autistics is a real problem that can persist in different online spaces (esp on tiktok), the same problems exist with parents of autistic level 3s removing autonomy or generally talking over their children. While I'm not at all accusing Christine of that, the distrust between more verbal Level 1s and parents of Level 3s can run both ways - After all, Autism Speaks wasn't created by Level 1 autistic people! And yet it threatens us all. There is definitely a productive conversation to be had between different types of struggles (and most often you hear from the support system of Level 3s in these types of discussions and not the individual themselves which I also scratch my head over sometimes) and I don't think we need to be on opposing teams, intersectionality HAS to be talked about. All too often in psych, getting the right (or any) diagnosis depends on race and class privilege, and often removes autonomy from disabled people in the process. These are the problems we should be talking about, not just "autistic trenders"
Thank you for covering this. I’m a late diagnosed level 1 autistic who works a part time job now. I’m so grateful for being diagnosed because the view I had on myself prior to being diagnosed autistic was so bad that I felt the next job I was going to lose would have been proof for me that I was fundamentally unable to improve. I’m so lucky that it was during my last full time job that I was diagnosed because when I ended losing that job due to my bosses actively sabotaging me despite me active expressing the accommodations I needed, my knowing I was autistic and over the 9 months before I lost that job I spent exploring what that meant for me, I was able to understand myself better and have compassion for my struggles rather than demonize myself for losing another job in our neurotypical workforce. I also agree that the diagnostically system is not yet best designed for our system to effectively assess the people with the range of struggles that us autistics have and other dysfunctions that exist out there. We are so complicated, us humans, and it’s counter intuitive to make the boxes smaller rather than allow for more boxes with more accurate descriptions to be available.
Also Christine's words are so harmful towards low supports needs people who may be going through an experience with impostor syndrome, helping them to invalidate themselves. As someone who also has suffered abuse, I sometimes feel like "well, I got through that. Maybe I'm not traumatized, maybe I could handle it." But I definitely shouldn't have had to, and I'm definitely not perfectly okay from all of that. I have to remind myself constantly that just because I'm still here isn't proof that I'm all right.
i’m a very very high functioning girl. people are totally shocked when i tell them i have autism, i go to parties often, i am in a big friend group and have been offered modelling jobs multiple times. just because others can’t see what i go through doesn’t mean it’s not real. i’m 16 now but my whole life i’ve struggled with relentless bullying and teasing, sever sensory issues, had no friends, struggled with mental health (pretty much every mental health problem you can think of) and didn’t ever go to school. people seen me as lazy and weird, but whenever i tried to express how i struggled i’d be told “she’s just a picky eater” or “she’s just shy”. my whole life i’ve felt so out of place and lonely, i went into phycosis when i was 13 due to all the stress and ended up getting sent to multiple mental health places, i skipped camhs waiting list and got told i had asd. i found this so difficult do deal with as its a lifelong diagnosis and still have trouble with acceptance now. autism looks so different in everyone, it’s so misunderstood and the jokes about it are relentless. i don’t think it’s fair how that lady can say we don’t struggle as much because i definitely do struggle as much just not in the same ways. sorry for this being so long lol
The worst thing about the DSM squishing us all together is that all autistic people have the same basic struggles, but the difference people see clearest is the gap between those without intellectual impairment, and those with intellectual impairment. THAT should put us into two separate categories. (where we were until they decided to scrap the term "Asperger's") That's what I think needs to be changed, and I know of others who also feel that way. Having us all under the same umbrella causes people like Christina and other closed minded individuals to compare us from superficial observation only, and come up with the notion that we have no problems, we're just being lazy, etc, when it's totally not true. Where was she when I was getting bullied at school, when I was getting SA'd as a teen, when I was getting denied a promotion even though I was perfect for it (all related to my vulnerability as an autistic child / adult with no support) ? But she basically says people like me should just accept being called BPD and worse things because we're not really autistic. Even though we fit the criteria necessary to get the diagnosis. I can speak, but I can't find the right words to get people to take me seriously. I can't find the right words to avoid misunderstandings. I've been wracking my brain for a week trying to think of the right words to say to a person at a program I need to call about housing. OBVIOUSLY, I have a communication deficit, and I'm not getting support with this or any of my other struggles.
I tend to agree with you. It's too exhausting having to explain the DSM-V definition of autism to other people, and I wish lower-needs autistic people weren't put in that position. After all, we have a communication disorder! Human beings are more amenable to accepting new information than revising what they already think they know. Everyone thinks they already know what autism is, and it isn't us.
First of all, I´m very sorry for what happened to you and I hope you get the help you need now. and I agree with you! We level one autistics don´t suffer less than the autistics with more support needs, but it is different. When I said I had Aspergers, people understood. Now when I say I have autism, they think I´m lying or misdiagnosed, because they can tell that I´m very differnet from someone like Abbey. Why make the terms less specific? Abbey could not have gone to a school like one I went to, even if she "had to". The headmaster or headmistress would have told her: "you can´t be here." I had to do it without support and that´s one of the reasons why I´m in a psychiatric ward right now. I don´t think I´m happier than Abbey or have less problems. but I understand why Christine wouldn´t want me in the same category as her daughter.
@@FelinaFairyphonic I'm sorry you're in a psychiatric ward. I've been in a couple myself at very difficult times. We're proof that people "with low support needs" DO STILL HAVE SUPPORT NEEDS. It's extremely unfair that some people want to be so nasty to us. It's like they're extremely angry AT US because we can do things their loved one can't. The things they never consider are the things we can do put us under more pressure, because people expect us to be able to do things we can't, or that are extremely difficult for us, and then punish us for not being able to or having a hard time - and yeah - then they act like we're lying when we tell them we're autistic to explain why we have those problems. Level 3 people don't get that kind of pressure, and while our accomplishments are ignored and unappreciated, they get praise for all of theirs. Not to say they have it better, because they don't, but it kind of evens out in different ways.
@@raven4090 Thank you for your kind words :). I agree with you completely! I think "low support needs" and "high support needs" can also be somewhat misleading terms. I know someone with "high support needs" and he can do things that I can´t. I need a lot of support, even though I´m "gifted" The categorization of mental disorders is a very philosophical topic in my opinion. I would never get mad at people like Abbey's mom for wanting the term Aspergers back or another way of separating us. What makes me sad is that she doesn´t take our struggles seriously. I wish you all the best and if you ever have to go back to a psychiatric ward, I hope you don´t feel ashamed. We deserve help :)
@@FelinaFairyphonic Thank you. I hope you can get the help you need and get out of there. I also wouldn't object to having the term Asperger's back. Getting rid of it did us a huge disservice. And it's just because misinformation. He did work for the Nazis, but he saved a lot of autistic children from going to the "showers" by diagnosing them with what we have. He called them, "little professors." I wish we could be given assessment tests, and then get help according to both strengths and challenges. Many of us have talents that could be very valuable to businesses, and the world, even if we need assistance with general life requirements. Especially gifted people - their talent gets wasted, due to not being appreciated, and not getting the opportunities to let their natural skills shine.
Not everyone is the most vocal about their mistrust in the capabilities of an individual who retains a psychological hinderance of any kind, nonetheless it can often make someone feel far too out of place
7:16 I didn't need speech therapy, but I *did* need OT for motor issues. But the possibility that the motor issues were connected to autism was never considered. And, in general, that's something she's missing here: for a lot of us who were diagnosed late, many individual issues related to autism were identified as things we struggled with, but nobody connected the dots.
She's claiming her suggestions would "help us" in her comment section but I'm having a hard time understanding how it objectively would. Her logic has a lot of holes in it...
I had all my elementary schools force and sneak me into the disabled area of the school (where all those teachers good people… absolutely not Holly shit no!!) but my parents refused that I wasn’t disabled just because of my intelligence and language skills when I was outside of school that was very stressful environments…. Anyways I am now diagnosed through a therapist that’s knowledgeable in ASD but she knew I didn’t have the funds for the “official diagnosis”….. when I told people, specifically a friend who’s a speech therapist they immediately denied the thought of me being diagnosed….. because I’m almost 30 and have learned some copping skills but I still feel it’s extremely obvious if u look and me when stressed….. Ive quit literally sat balled up in a blanket on the couch fully covered and had to force myself to sleep due to how loud and the camera flashing at their family party….. . Like yes you see me now as I’m almost 30 but you never saw me as a kid or teen sinking…. And I also don’t feel like it’s my duty to share all those stories with them to prove to them especially since they are refusing a therapists diagnoses that I’ve been seeing for close to 3 years 😐
I am 53 years old and didn't realize I was autistic until I was 52. I have dealt with childhood trauma and have been trying to heal that the last 20 years of my life. I made a lot of progress, but I still dealt with melt downs, depression and anxiety, because I couldn't heal myself to meat societal standards. I dealt with autistic burnout, suicide ideation, disassociation, I have epilepsy, I deal with OCD, ADD Overfunctioning, PDA, hypersensitivity to sounds, and light, sensory issues, pallialia, paradoxical reactions to medication, IBS that worsens with stress, stay home all the time because of issues with socialization, my only friends are my immediate family, because I can't make friends or sustain friendships. I am Spectrum 1. If Christine wants to say all of those experiences are NOT deficits, then what the hell are they?? I stayed depressed and anxious and what got me out of it, was coming to understand last year I am autistic. Finally, I stopped trying to force myself to be something I'm not. That's where I found reprieve. And my daughter understands I'm autistic, and helps me in areas I struggle. I now know how to accommodate my needs. I now have patience with myself understanding my needs are very valid. I find it unfair she wants validation for her daughter, while if anyone is different than her daughter is NOT experiencing deficits in her opinion, she is invalidating our experiences. You can't ask for what you're not willing to give. Thank you, Irene for all that you share with your channel. You are much appreciated. You give us a voice. Truly, thank you. 💚
they haven't been diagnosed, but i'm fairly certain that both my immigrant parents are also autistic. my mother is obsessed with school and has 2 bachelor's degrees, a master's, and is getting her doctorate. my father was in the armed forces of several countries, and has a high-paying job. bcs they're "successful" they aren't considered as ppl that need accommodations... but we all struggle to keep things clean, take care of ourselves, eat meals. they can get sucked into a task for hours at a time and neglect their every need, they both struggle with communication and my father especially struggles with friendships. just bcs there's an area an autistic person succeeds in doesn't mean they don't struggle. it's like she thinks autism = low quality of life with no hope. that's not true, and a lot of older people and especially immigrants simply don't have the language, time, money, or luxury to try and get help. especially when the system is stacked against them.
It hurts because it feels like gaslighting.😞 If everyone has a mother like her maybe there would be more understanding since they would be advocating for all these unique individuals. It also hurts because it is almost impossible to advocate for yourself . I can't believe I'm alive and how many times I came so close. As a mother of four who have similar traits to me I could never imagine wanting to withhold others from getting help just because they are not similar enough to one of my children. Also, what about those on the spectrum who can not talk at all ? I have found that listening to such ones I can relate to them more then most people. This mother may not realize that she may be harming her daughter more than helping by being close minded and she is not empathetic it seems.
As a late-diagnosed, higher functioning autistic woman who struggles with an overbearing mother, I wish Abbey’s mother would stop speaking for her. It is so dehumanizing to feel like you have no voice. Abbey is not dumb. She is able to speak for herself but her mother holds her back and makes her feel like she can’t when she can. It’s infuriating to watch because she’s showing everybody that she doesn’t view Abbey as her own person with autonomy. In my opinion, it seems like Abbey’s mother likes the attention she gets from Abbey more than caring about her feelings or agency. She treats her like a puppet.
Please do remember that it's not the criteria that is an issue, it is the examples presented in the text, clinical bias, and lack of education. The DSM is also not meant for your average person; it is meant for clinicians to use as a guide ❤
Irene you are so well spoken and always find the right words and arguments you have a talent, the videos you make are a gift for people with ASD that still don't or are in the process to find the words (and I dont doubt you worked a lot for this and it's still difficult). It really helps personnally to take notes and reflect on what you said and try to then express myself, especially to people that don't understand what we go through. So truly thank you for the bottom of my heart and all the way from Paris (we lack ressources in France and are soooo behind in diagnosing women !).
i was giving Christine my benefit of the doubt since i felt like she mostly fears for her daughter obviously but its very apparent that she developed her opinions strictly through what she experienced first hand and didnt really listen to other experieces that would be completely different from the autistic people she has met through the programs she mentioned. its basically the same arguement we are all used to by now where people that have experiences with the 'real' autistic people feel as if we are somehow taking the support from them. all that we do is literally begging to get a bit of acknowledgement of our difficulties and snippet of the support we were basically denied most of our lives.
I want to share a little bit of my childhood story. I had selective mutism. I did not speak at all in kindergarten and ended up having to repeat because of it. There was nothing wrong with me intellectually, but my parents were told I was not ready to move on socially. Everything made me uncomfortable and frightened about going to school. The sound of the busses, the florescent lighting, the smell of the soap in the bathroom. I distinctly remember going to school every day feeling like I was going to have diarrhea and/or vomit. I never ate breakfast and still don't for this reason. I was also the type of ***undiagnosed*** autistic kid who was afraid and deeply embarrassed by of ANY kind of attention. People's reactions to other people and situations I had observed always confused me so I never wanted to act up/ask for help because I didn't know what would be done to me if I did. I lived in a state of terror feeling like I needed to escape but also trying to suppress it all down so I wouldn't get noticed. Looking back on it, and after observing other autistics nowadays I wish I would have felt comfortable enough at any point in my childhood to show my emotions or have my behaviors reflect to anyone my state of being so that I could have gotten the support I needed. I was not ok. However, my parents always had other bigger problems and I always felt that burden as well. It is possible to suffer silently. Fast forward to today whenever I would volunteer at my kids school and use the bathroom the smell of the soap immediately transports me back and I get a little ZAP of panic for a second. Funny that 35+ years later schools are still using the same type of soap. I also never understood as a kid and even now as an adult why I could never say what I wanted to say in the moment. I go blank. But when I'm writing it flows out of me so naturally. Still have the selective mutism just never had the luxury of a diagnosis.
Irene, I love the way your mind works and how honest and GENEROUS you are to people you disagree with. It uplifts my heart to see that I’m not the only one who understands that a disagreement is only one aspect of any relationship (even between strangers) and that we can be respectful and get much farther when we exercise our RIGHT to specifically assume the very best intentions from those we don’t agree with publicly (I acknowledge it’s not always safe to assume the best intentions from people in private spaces). I see you generously extending the opportunity to pull this conversation up towards tangible solutions - you don’t resort to simply scoffing at her or appeal to those who dismiss her as an evil person. But as solution oriented as you are, you are equally generous in showing your integrity to logic and truth when offering your thoughtful feedback. You don’t allow her to manipulate the conversation towards solutions that ask you to dismiss contradictions or skirt important things that they try to frame as nothing more than semantics. So instead of simply dismissing her as stupid, you shed a bright light on exactly what you’re being asked to look away from and ask why. NOT accusationally, you are just exercising your right to expect her to make sense of her good intentions if she wants to be taken seriously. So you simply and concisely demand a satisfactory response that is precise and no longer dismissive or contradictory - knowing that she must eventually do so if pressed because she claims to have good intentions. Because you know that YOU actually do have good intentions, and you are open to changing the way you think about things if you are given good reason to. And therefore you have no problem expecting the same from others - which takes a lot of patience but don’t give up. Keep pushing the conversation back to whatever others try to gloss over and make them sort out their contradictions until you get THEM to their own truth and one of three things happens: they are either forced to change their stance in order to make sense, OR you gain clarity about whatever fundamental belief you happen to disagree on about reality itself that you had both assumed was common knowledge, OR they cause you to realize you were wrong. Even though most Neurotypicals don’t seem to appreciate communicating this way - they would rather deflect by scoffing at each other and are satisfied to blow each other off with the most sarcastic accusations - never let that stop you from holding anyone’s feet to the fire to get a satisfactory answer from them about the things that matter to you. Your integrity to the truth makes me imagine that if I knew you in person, you would be so fun to talk to about anything, but it would be particularly enriching to engage in controversial topics because I bet if we “disagreed”, we’d be able to figure out why, from an open and transparent approach. I have a friend like that who is also neurodivergent and she is one of the only people I feel like I can be myself with. Unfortunately we live far apart now, but whenever we got together we always had so much fun talking all night and found that we had many opposing views of controversial things that we were both quite passionate about. And yet we could discuss them freely and deeply to uncover fundamental truths without concern for anything but the truth as we retained the assumption that we were both good people. In doing so, we were actually able to change a lot of our personal opinions, or at least discover the core beliefs that reflected how we both had really good intentions. But most importantly, we were able to access a broader awareness of the positive motivations that inspire good people to choose perspectives that are difficult for other good people to understand.
Much appreciation for your expression, Irene. Always. 🌻The difference between ‘knowing’ and ‘showing’ has been like feeling The Eye of Sauron on me my entire life with very few witnesses to tell about it. Caregivers who tried to force a Eurocentric identity on to me without consent my entire life have treated me as less than a person at almost every turn. My elders from the Black community always treated me like I am a tailor made person and it’s made a profound difference in my mental health and my own growth and development as a person who’s ‘different.’ Just as emotionally unaware people will put others in positions to do more emotional labour to cover for their blind spots, others are often in a position with Eurocentric American minded people to work gruelingly harder simply because of the Eurocentric American frame of reference to broader conversations. I have had to ask explicitly as people if they are speaking from a Eurocentric American point of reference just to bring some consensual awareness to the dialogue they’re having with me, who is from Ireland/English ancestry… but is not listened to as someone with a voice regardless of how they measure prestige or dominance from a European American descendant framework. I am a person, not their limited ability to perceive me. In my experience, the person who complains that someone is taking oxygen from them, when there’s plenty for everyone, is often the person who’s trying to be compensated for their hard work at the expense of everyone else’s hard work. “Learning without wisdom is a load of books on a donkey.” -Zora Neale Hurston
I was diagnosed at 20 years old it's been a year and I'm 21 now. My nerologist stated that my school failed me. I had struggled badly with school focusing and socializing. In freshman year I had struggled with suicide ideation because the sad thing that I felt and I thing many autistic people have felt is recognizing this world is not ment for me. The reason why my mom couldn't help dignose me was because of class (money) my mom and dad got a divorce and she was my primary caregiver and she struggled with money and too busy working to notice some traits in me and my father although he had insurance for me refused to take me when I needed a doctor. My father didn't believe in mental health issues and was very stubborn. (He too I believe has undiagnosed AUDHD so it was a hard pill to swallow for him) I can't verbalize or recognize my struggles but I do recognize the pain I have and I know its valid. I think if I never got dignosed I'm not sure where I'd be or if I'd be alive. so many people with Asd become homeless, addicts, abused/scammed,commit suicide and struggle and I think I'd be a part of those statistics if I'd never got dignosed and if no tried to understand me. Due to my horrid meltdown make me feel like dying I'm not sure I'd be able to take it. I know others have expirence similar to me which is why her perspective makes me deeply upset. Although in a way I understand she probably feels like feels like Abby is invalidate and probably feels that for her. She probably also feels invalidate as her mother that mothers don't feel and expirence the same as she does. I understand that because I've experienced jealousy towards other autistic people for being able to mask well or for being able to do things I cant can't do. although it's valid for me to feel that way I Shouldn't put others down for it and act on that feeling or it would be wrong. And seeing Christine makes act on those feeling with lack of education on what she's saying and also seeing the privilege she has by saying it make me so upset and understand even more how dangerous it is to act on my feelings. I'm sure if she sees me me parts in my life that no one has seen shed recognize me as autistic or if she sees me when the mask is slipping off shed see me as autistic but if she where to see me pay a cash register or breefly speak to front office at the doctor's or see me greet someone at church she would say my only struggle is eyecontact and probably invalidate me. I hope she understands that she can't see into peoples lives just like people can't see into hers that her feelings are validating but the way she's expressing them is wrong and so many people can look at Abby and say the same about her I seen a video Abby made an appointment to get her brows done and was able to let people touch her and get her brows waxed I could never do that by myself and waxing would put me into a meltdown I know because it's happened to me before when I tried to wax myself and I can't let people touch me for too long or I'll start to cry and have also a bad meltdown/shutdown. I also seen Abby on jublee where she talked with a group of people and I cant speak at all when there is a group more then three. Dispite that I recognize 100% Abby has Autism and so do I. Different autistic expirence can co exist and be validatted without putting one or the other down. Different needs should always be validated and attempted to be understood.
When you said “just because you had to doesn’t mean you could” I burst into tears. Thank you. Thank you. That is honestly so validating and what I needed to hear. Christine’s viewpoint made me very defensive and invalidated about my own experience and that just brought me back.
As a fellow Level 1 autistic who wasn't diagnosed until I was almost 34 years old, I felt like I walked through life with so much confusion and difficulty until I was practically 30 and started exploring the diagnostic process. I grew up in the 90s and my parents were huge "bootstrappers" so they never deigned to apply any label towards me. Because god forbid I was anything other than normal, right? 😑 (They got way better with time, but still.) As another commenter essentially wrote below, "Yes, I got through school, but at what cost?"
And I’m sure life was very hard. It doesn’t mean that since you are Level 1 autistic you didn’t have serious struggles. Thank you for sharing, I hope you’re able to go through life a little better today ❤
Thank you, as always, for validating those of us that went unnoticed. I’ve been deeply grieving the life that could have been for me if I had the resources while trying to focus on how far I’ve come on my own, so Christine’s content definitely struck a nerve.
Saying "if you're functional, then you don't have a disorder, you're just different" invalidates all of the pain autistics endure in order to conform. Pain which many people have no idea about because, of course, we have been forced to internalize it. It's like Schrodingers autism from a neurotypical perspective- "if I can't see your pain or struggle, is it even real? Or significant?" Well my answer would be, it depends on your level of empathy. Why would you want anyone to just exist at the extreme end of their pain tolerance for their entire life? Especially, and most importantly considering how more tolerance is actually built by lowering the base level of pain. It is NOT built by desensitizing ourselves to it.
This was very well thought out and articulated on your end. I follow Christine and she just comes across as SO privileged in all of her takes. That's all I have to say about that... like her opinions are all so clearly rooted in her own privilege as a well-off white woman who is very much "outside looking in" when it comes to autism. I empathize with her frustrations as a caregiver, but that's what she is. A caregiver. Not an autism expert, and certainly not an authority on the matter.
also i feel like the biggest difference she is talking about is the ability to mask.... masking doesn't make someone less disabled - it makes them disabled in a different way. the stress of masking is correlated with way higher risk for stress-induced health disparities (like mental health tolls/autoimmune disorders/heart disease/cancer). level 1s are going to be more likely to develop autoimmune disorders than level 3s, so masking is not a skill - its a bargain with society that we have the ability to proceed with. we trade our health for some acceptance... idk if having that ability is inherently less disabling in this world. yes level 1s, 2s, and 3s have DIFFERENT needs, but as you said, level 1 needs get ignored easier by neurotypicals. we can't talk about the disabling nature of autism without discussing comorbidities!
Your expression at 15:49 is ME FRFR as someone who is seeking diagnosis, I struggled for years with sensory issues, meltdowns, and never got help in school. I struggled so much and had to cope and mask 24/7, whilst dealing with severe chronic pain. My family and I didn’t have the resources until now to seek diagnosis or therapy. If you have gone through something similar your autism and neurodivergence is valid ❤❤❤❤ with or without accommodations. I’m so happy to know there are creators online like her that speak on these issues and with people spreading missinformstion❤
'I feel thin, sort of stretched, like butter scraped over too much bread.' i've related to this quote since i first heard it in the fellowship of the ring movie, when i was twelve or so. weird thing for a child to relate to, but i was probably just feeling like that because of autistic burnout
Thank you!! I can't express how much I appreciate this. The >picking things apart to find the lie< is just so disturbing to me. The amount of time and efforts people spend to make the lives of others worse is just...just doesn't add up for me. I'll keep living with everything I've been diagnosed with no matter what anyone else says.
It’s pretty basic: “my daughter had 20 years of speech therapy…it’s a different thing!” Yeah Christine, it’s called a different LEVEL. It’s like she’s arguing for something that’s already in place.
i still don't have the diagnosis, but i accepted i was autistic after my kid was diagnosed, in my 30's. i got some support in school because i'm dyspraxic and the school knew i was adhd as well even though that also was undiagnosed for awhile. to avoid bullying from other students and family i refused to use any supports by my teen years. I've been through eating disorders, self harm, s attempts and thoughts, addiction, more inpatient places than i can count. I'm glad we're recognizing more people now. i'm glad we're getting more accepting and my kid doesn't have to go through what i did
Yes! It's so fucking gobsmacking how much hate people get for pointing out real problems we have or have gone through. I want kids to never go through what I did...why gatekeep this...
Wonderful video. I admire your graciousness towards Christine. And I admire your clear, thorough and deep analysis of this ever evolving arena. I do agree with everything you have said, and I also truly empathize with where she is coming from as I am a full time single parent caregiver to my level 3 autistic 25 year old son who also has Down Syndrome. I can feel how easy it is to see level 1 as not really being a thing. After all, so many people I know, including myself, might now be identified as a level 1 but having had to go through life just thinking we were different in a very hard way, with no support towards what we needed to develop in a healthy and graceful way. And as a 69 year old tired woman caring for essentially a toddler in a man's body, I get where her perspective comes from. And yet, my reaction to this video of hers was more judgy than yours in that I got frustrated with her lack of empathy towards other people's experiences and I totally agree that if support is needed, it is a deficit, not a difference. I've been devouring your videos since I stumbled on you with your infj/autism video.
I'm level 1 and I struggled at school and jobs - not because of the learning (it's one of my hyperinterests and it's very annoying to people around me :\ but bullying and being taken advantage of). And it is heartbreaking thinking that one way or another we all suffered and many developped more disorders due to the lack of support vs our struggles.
I can’t imagine that any autistic person would care what “Abby’s mom” thinks, about anything. I don’t. My cousin’s child, was a nonverbal, nonfunctional, level 3 autistic. I, a level 1, can function moderately (poorly) well, keep a job, support an entire family, but…my mind goes completely blank in situations where I’m speaking in front of others. The verbal function isn’t there. We are both autistic, with many comorbidities. Regarding our autistic brains, it’s a lottery, where everyone loses. Doctors can see the white matter anomalies. I had all of the signs, yet I was missed. There are others, in my immediate family with the same tale, because we share common ancestors. When I was a child (80’s-90’s), you did NOT want to be labeled “autistic”. Today, I embrace it, and life makes sense. Regarding the parents of autistic persons…they need love, and support, as well, even when they share their boneheaded opinions. 🙂 Keep up the good work.
Preach. When you were talking about work and being disabled. It hit me hard. Thank you for being such a great resource and support. Your videos are what I need.
It really feels like what Christine is saying is just that Level 1 Autistics don’t have it “bad enough” to be considered actually autistic, which has frightening similarities to how I used to talk to myself about my ED and other mental health issues. You can’t have an eating disorder, because you do eat. Because you aren’t x kg underweight. Because you haven’t been hospitalised. You can’t have depression, because you did smile that one time last week. Because you don’t cut deep enough. Because you haven’t tried to unalive yourself. You can’t have anxiety, because you do talk to people sometimes. Because you don’t have panic attacks _every_ day. The list goes on. This kind of thinking isn’t helpful. All it does is make people doubt themselves and their experiences for longer, delaying them asking for support, thereby giving their issues more time to progress. So when they actually do seek help, it’s just an even longer and more painful process.
Thanks for speaking on this! I 100% agree with you. I relate so much, i was diagnosed at age 30 and I struggled so much in childhood all the way up to my diagnosis. I would've been considered higher support needs as a child but I was forced into a world that didn't accommodate or offer support to me. When I got diagnosed at age 30, they diagnosed with me as level 2 autism.
I agree 100%! What about those of us who are gifted in the speech department? I am low support autistic (and ADHD), with a high IQ and speech and music gifting. I speak 6 languages and have perfect pitch - which means I am REALLY good at imitating. I was diagnosed in my 40s. I absolutely struggle with speech when I‘m uncomfortable, stressed or afraid, in the way that my frontal lobe shuts down (ergo nothing grown up and intelligent can make its way to my mouth) and I can only speak from my limbic brain. What I mean is that I will fawn or attack through speech, until I get away from the stressful situation. I ALWAYS regret what I say in these cases and I can‘t stop it - it‘s an involuntary stress/danger response. I used to call this „turning dumb“ before I got my diagnosis. Now I know that it‘s actually a form or selective mutism, applied to a person with speech gifting.
9:48 Maybe I shouldn’t be watching this because I’m currently going through an identity crisis and finally trying to seek actual support for my autism diagnosis that I got six years ago, and this is kind of triggering, but wow… I agree with you fully. This kind of gatekeeping doesn’t make any sense. I wasn’t pulled out of “normal” school until I was 15, and the place I was put and stayed for a year couldn’t accommodate me. I was privileged enough to be sent somewhere I could finally breathe when I was 16, but all those years leading up to that point? In that time, I developed comorbid mental illnesses that have stayed with me ever since. When I was diagnosed with autism (which was actually Asperger’s Syndrome, something Christine would probable just call “neuro-different”), I had an ED and was severely underweight. I was literally dying. And most people would have looked at me and thought I was just a regular able-bodied girl, but that doesn’t change what was going on inside me. It’s so incredibly hurtful to invalidate people like me and others simply because we didn’t get speech therapy or whatever (and yes, I also struggle with speech and non-verbal episodes and selective mutism despite the fact that I CAN talk). I’m 20 now, and I can’t work. I’m trying to get better, but I don’t need people like this telling me my problems aren’t “real” or “not that bad.” I already tell myself that enough. I literally think I might not have been alive today if I weren’t lucky enough to have my family and have access to at least some support. This is what invisible disability means; you can’t just look at someone and assume that because they look “normal” they haven’t had/still have profound struggles. Ugh. 🙄
it's interesting that christine brings up OT and speech therapy, which are two things that I did have as a child but wasn't diagnosed with ASD until adulthood bc I pursued getting a diagnosis. It's funny how even tho I did go through similar experiences as Abbey, her mom would still argue that I don't have ASD bc my symptoms/signs weren't as severe as Abbey's
My feeling when I hear arguments like Christine's is that her argument is rooted in ableism. She feels as though late diagnosed autistic people shouldn't have the same diagnosis as her daughter because they aren't as disabled as her daughter. But autism is a spectrum disorder, it effects us all in different ways. I have never been able to work, I have been on disability for most of my adult life. Doctors have been confused by what is "wrong" with me for years. Being late diagnosed does not make me any less autistic or less disabled. I just didn't have the supports available to me to understand why I am disabled. Using the language "difference" instead of "deficit" is something the autistic community likes to do to remove ableism and encourage the idea that there isn't anything wrong with us for being autistic or disabled. When Christine insists that her daughter isn't different, that she has deficits, it pushes the narrative that autistic people are broken neurotypicals.
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I wonder if Christine realizes that undiagnosed and unsupported autistics are at such high risk for early death for a number of intersectional reasons. I would argue the harm of exclusion is greater than her irritation with inclusion
I don't think she's ever even thought about undiagnosed and/or unsupported autistics including those with barriers to access to those therapies christine got for abbey. has she realized some of us just make do and grow up anyway?
in fact she makes me so angry i'm gonna just go ahead and say i don't think christine even thinks about intersectional identities particularly poverty when she thinks up her responses, thinking they sound thoughtful.
💯
I'm happy that her daughter was diagnosed early and got all the interventions/treatments/help/accomodations she needed. I am sad for myself and others who had to grow up desperately struggling to try to figure out how to "get by", barely surviving, traumatized, all because we were never diagnosed. And now that some of us have been fortunate enough later in life to get diagnosed (myself at age 60), she is trying to take away the validity of that diagnosis.
Unbelieveable!
@@christinelamb1167 It is unbelievable. I get so triggered by her...
As a little black girl, I started school in the 70s and mostly white kindergarten in elementary school classes. I was called antisocial, and lazy, and was always punished for not speaking, not looking at the teacher in the eye, and not doing the work. I spent a lot of time standing outside the classroom door while the teacher went on the lessons for everyone else. At no time did anyone try to figure out what was wrong with me. When I showed flashes of intellect, they would point at me, saying I could do it I just wouldn’t apply myself.
In junior high school, I had to have special permission to hang out in the library because the other students would beat me up because I was so strange
In high school, I decided to take a drama class so I could “learn” to act like everyone else.
There wasn’t one day that I didn’t struggle. Someone might say that since I continue to pass to the next grade, I was pretty much OK, I say it was because they didn’t know what to do with me, so they just put me ahead. (By the way, that’s how nowadays you get somebody in the sixth grade that’s reading at third grade level. Happens all the time.)
I wasn’t diagnosed until I was in college. I decided to go to junior college, thinking that even though I was stupid something had to get in my brain if I exposed myself to it enough because I did want to learn. That’s when I was pulled out of class, examined, and given the diagnosis of ADHD. That wasn’t until my mid 20s. They weren’t testing grown women for autism then.
Ironically, after that, I’ve was accused of faking it for accommodations by people who don’t know anything about me.
Now all these years later, I find out that autism can be up to 50% comorbid with ADHD and the symptoms overlap. My symptoms correlate more with autism than they do ADHD. My psychiatrist says he’s pretty much 100% sure that I have it as well, but since my healthcare doesn’t cover it, and they don’t consider it necessary for adults since , the accommodations are the same. I am officially undiagnosed as autistic. But I am.
According to Kristine, my struggles weren’t as profound as her daughter. I say that in some ways they were much worse.
The analogy I would like to use for her opinion is somebody who needs to compare trauma, and say their trauma is worse than somebody else’s because… Her situation with her daughter is worse because she had to pay for accommodations for her and deal with her struggles.
Just like I don’t have the right to look at my situation, and say that my struggles are more valid than her daughters, because I had to deal with persecution, ostracization, and no accommodations. she doesn’t have the right to invalidate anyone else’s autistic journey.
👀 When you mentioned getting put out in the hall it pretty much melted me.
I can identify with so much of your story, but it was the 90s for me. I was even given my own desk to sit out there & do busy work in upper elementary & I remember getting put behind a fridgorator box in the back of the classroom for months of 1st grade. So many paddlings... all the way up to 6th grade, which was probably the worst. And that was with my momma being an English teacher at the tiny, rural school. I always wondered how much worse it would have been if she wasn't on campus.... my grades kept getting worse until I made an F for a final grade when I was in 5th grade. I got in so much trouble over that that that was when (wtf how does 3 that's make sense... I have to leave it!) I started learning to heavily mask & never made a quarterly grade lower than an A for the rest of my school days. I was the Valedictorian of my class of a whopping 15 students despite my troubled younger years. I've really blocked out some of the atrocities I experienced in elementary though... I really appreciate you sharing, so I could remember that I've blocked some things out that could use some processing.
Tysm!!!
🫂
we are the same age, grew up in the same era. So much of what you wrote resonates with me, but my diagnosis was PTSD, not ADHD. I remember every weird kid at my school knowing I was more like them and nothing like the kids I pretended to be. Always hiding, never myself. I missed a lot of school.
Very well said!!
Yes very well said and articulated.
i have one thing to say to that woman, if you really know abbey worked so hard to get where she is and had 20 years of speech therapy, LET HER USE THE SKILLS let her speak for herself because she definetely can. she keeps pushing abbey to repeat the quotable stuff and aaaaaaa
Yeah like when she says 'no, honey, we're not talking about that' to Abbey or keeps telling her that she's not responding to questions in the right way... Like, idk, let her express herself in the way that she wants to? Like I'm sure the other person can handle veering off topic sometimes, that's how conversations work!
100%
💯
As an autistic women who struggles with an overbearing mother, I wish Abbey’s mother would stop speaking for her. It is so dehumanizing to feel like you have no voice. Abbey is not dumb. She is able to speak for herself but her mother holds her back and makes her feel like she can’t when she can. It’s infuriating to watch because she’s showing everybody that she doesn’t view Abbey as her own person with autonomy.
So true. Having learned the fuller context of what people know about Christine. She’s definitely holding her daughter back in some ways. And she’s very misinformed about the complexities of different kinds of Autism.
“Just because you’ve had to, doesn’t mean you could” is gonna make an appearance in my next therapy session for sure. Excellent video!
Most people wont understand that even if I say it. They act like happiness comes from enduring hardship. They hear me talk about my struggle and say "well you've overcome all that so I bet you're super fulfilled and proud!"
Wow, no, I'm not. I haven't overcome anything at all. I'm tired. I'm sad.
I'm exactly the type of autistic who if I met Christine today & talked to her, I would be the poster-child of "neuro-different."
I'm not even a level 1 autistic either. I'm level 2. But because of the environment I grew up in, I had to put all my skill points into masking. I may appear "neuro-different," but I am nearly 26 and only just figured out how to brush my teeth correctly a few WEEKS ago. Because I had to spend all my time and energy as a child learning how to mask my autism.
The reality is that I was minimally verbal until my early 20s and I still struggle with forming clear, coherent speech in my mid 20s. My sensory sensitivities give me chronic pain that was so visible & severe in early childhood that my doctor checked me for hidden injuries when I was around 5 years old. I run away from home and hide during meltdowns. The only reason I am able to work is because it consumes ALL my energy to the point I have difficulty meeting my basic needs. I often go to bed hungry because my autism consumes so much energy that I become completely immobile after only a few hours out of the house. I am rarely able to spend time with friends because employment consumes all my energy and I don't have enough spoons left to socialize.
I hate that Christine thinks people like myself don't deserve community or support simply because my parents and doctors did not believe it was possible for girls to get autism unless they are intellectually disabled. I *should've* been in speech therapy. I *shouldn't* be employed. I *should* have a caretaker. Music therapy would've been *life-changing* for me. The fact I don't have these things aren't signs that I'm not autistic. They're signs that my basic needs are not being accomodated. I don't want people like Abby to be excluded. I want loving caretakers like Christine to be able to access the services Abby needs with ease. I want her to have easy and affordable access to care that allows Christine to relax and start to develop more of a life and identity outside of being a caretaker. I want these services to be easier for them to access so that level 2s like myself and my best friend who came from abusive families can access care too. So that level 1s can get the support they need. My desire to survive is not an attempt to exclude Abby. Heck, I'd *love* to be friends with more level 3s like Abby. I want their lives to be easier. I want their needs to be validated and supported. I just dont want it to come at my expense.
She does think we deserve community & support, she’s very vocal about that. But that there should be another diagnosis created for us separate from Autism
it is different and there should be support for both. Maybe 3 levels for both types - classic autism and Aspergers which is now level 1 but with a new name. The main difference in the DSM 4 was based on language development. There are similarities but it is different. @@thethoughtspot222
Wow well put! ❤
I wish that people like me didn't HAVE to disclose that they struggle with basic needs, or barely made it of the school system alive just so that other people might believe that we're actually fucking autistic. I'm so tired of my disability getting downplayed by people who don't know shit about what I experience and feel entitled enough to claim it's something different altogether. I HAVE AUTISM. Whatever bullshit labels they want to come up with won't change that!!
(sorry for the rant.)
Thank you for the rant! I couldn't have said it better. 👍
Fr. Like I literally only learned how to brush my teeth properly a few weeks ago & I'm almost 26 years old. While I feel safe sharing this in autistic spaces, I do not share this with neurotypicals!! And I shouldn't have to for my needs to be validated. I work very hard to present myself in a way that allows me to be treated the way that I should. I shouldn't have to lose the respect of my community just to access support. Because, let's be real, most neurotypicals will either think I'm lying or braindead if they learn it took me over 20 years to learn how to brush my teeth without giving myself cavities from certain areas not being brushed properly.
@@LilChuunosuke i only learned to tie my shoelaces at 16 💀 and to properly see the time on analogic watches into my 20s. I performed academically and professionally but my brain is being chanelled into data, setups and testing. I fail at "basic" stuff in life. Wtf Abbies mom 😂
Have you ever seen someone with a broken bone not get the care they need? I think the result is a good example of what it’s like to have undiagnosed autism vs treated.
A person who broke their foot and wasn’t able to get care or support doesn’t cease to be. They keep living. They keep walking on that foot even though it’s impossible even though it hurts. Over time the bones heal in an odd way and muscles get stronger to compensate for the irregularity. It’s odd. It hurts. But it works.
For someone who had years of therapy and multiple surgeries getting over their break to come tell the person who had no help that their injury isn’t valid… that’s backwards.
😢 Your chosen metaphor actually happened to my mother as a child. She grew up during the Great Depression (economic suffering that brought lots of other suffering for those alive during that time.) She attempted to learn how to ice skate without anyone to show her how, on a pond near her home. She fell awkwardly and broke her ankle. At least, it hurt so much she assumed it was. Her folks didn't take her to a doctor for it, too expensive while they were wondering if they would be able to keep the farm they owned, or have to sell to survive. What her folks did was take her to the local shoe store. From somewhere in the depths of the storage room, the store owner came out with a pair of high button shoes that hadn't been in fashion for thirty years at least. If you don't know about them, they covered the ankles of the wearer, and were closed by a series of small, closely spaced buttons, which needed a hook tool put through the buttonhole and around the button to draw the button into the proper position. In my mom's case, it was meant to act as a brace for her injured ankle. She said she hated wearing them, not only because they made her look different than the other girls in her school, but also they didn't in fact provide much of a brace. And once she had them on, she was expected to walk to country school, just like her brothers.
I had speech therapy for 3 years in grade school. My verbalization struggles were written off as being "intensely shy" or insecurity because I was "gifted." I wasn't diagnosed until 2 years ago at age 42. I consider myself low visibility support needs because I am high masking and can keep my struggles hidden, but that doesn't mean they aren't there and that I don't struggle immensely with a smile on my face.
I was just finally diagnosed 3 months ago at age 60. I never had any kind of therapy at all, but struggled intensely all throughout my entire childhood and adulthood. No one cared enough to notice my struggles, or even care if they did. I have been super high masking my whole life, so to most people I "appear" to be normal. I too struggle immensely every day of my life, often with a smile on my face to hide my pain.
"Low visibility support needs", that's a good way to say it.
Yes, let's popularize *Hidden Support Needs!*
i agree with all of you in this comment. i too, mask constantly and yet i still have a lot of support needs, most of which i never got my whole life. i haven’t really determined where i would fall on the “support needs”scale yet. i appreciate reading your perspectives ❤
@@christinelamb1167
What kind of therapy do you get now?
She made herself understood during the Jubilee video. Those of us on the spectrum and our parents didn't go through the same thing that she and her child went through, therefore our autism isn't as valid to her. She's one of those autism moms trying to gatekeep the community.
I'm late in life to the autism party, but I'm glad as hell that the people I met in the community supported me in my journey.
Some of us had to spend all of our energy parenting ourselves, even with autism. My parents were too absent to even know they were autism parents.
Yes…I just learned about autism moms because I saw a video and was like hey that’s me! Because I’m a mom and I have autism so that’s me! No it’s not me at all. I am a mom with autism who has kids with autism and those “autism moms” are cray cray and terrible. Like they for real are like oh I have pass my kid is so messed up and can’t figure out why other autistic people are annoyed with them
@@DaughterofDiogenes the autism moms are the worst. I found an online group called “Autism Moms” thinking I fit that as I am a mom who is autistic and could use support from my peers and the first post was a poll to vote out all the women in the group who were autistic.
Anyone here know of a great group for moms or parents who are autistic?
DSM 5: comes with one term for basically one condition that was mistakenly divided before.
Christine: no, lets separate them again!
What does she think spectrum means?
Right!
Exactly!! It’s so weird how she’s complaining about the lack of division between her daughter and us high masking autistics- the difference is the levels. It’s called a spectrum for a reason. We all share a similar set of traits to varying degrees and varying presentations. It’s very sad to see that level 1 autistics are at war with autism moms 😅
Not to mention that they weren’t initially separate conditions at all, but rather constellations of traits according to the man who elites arbitrarily named one of the mistaken divisions after and then other elites retconned out of the DSM when even more elites got mad at themselves for not being able to figure out if they were allowed to say if he was strictly good or evil since some of them didn’t even have human psych or neuroscience training.
@@carish1452 😂😂😂
@@carish1452 😶😕
This video hit home for me. My younger brother is non-speaking level 3 autistic and he was diagnosed when he was two. I have recently been diagnosed with level 1 autism at 20 years old and my mom thinks just like Christine and refuses to accept that I am autistic because I am high masking and don’t struggle the exact same way my brother does. It’s very disheartening. (Not to mention my dads the opposite and he says things like “I think we all have a touch of the tism.” Like- sir that is not how that works)
That’s so hard, you’re experiencing invalidation on both ends. I’m so sorry. I hope as time goes on you find peace, community, and understanding in others at least.
I currently intern at a methadone clinic and most of the people who come in are (unfortunately but not surprisingly) homeless. I completely agree with you when you brought up that a good amount of these people are very likely disabled and/or autistic. Besides the immense amount of physical health problems they face (which goes into how this connects with addiction and homelessness) that could be caused by undiagnosed autism or other disabilities that they have no idea they have. I genuinely wish we had more conversations about this.
There’s so many aspects of autism that has yet to be explored conceptually let alone within research. Such as, how does different drugs affect autistic brains+neurology?? There’s still so much to explore. And it all starts with conversation about it. Thank you for your input, definitely something to further think on.
Yup I'm a level 2 autistic who doesn't have access to a proper support structure and ive been homeless more times than i can count. On top of the struggles with employment, many of us cannot get roommates off craigslist or anything because we are often immediately rejected for being different and giving off "weird vibes."
@@thethoughtspot222As an autistic woman with substance abuse problems, from my experience I believe that for many autistic people, substances act as a “normalizer.” When I drink, I don’t “act drunk,” I act more neurotypical. Which is also why it’s so hard to give up even though I know I am harming myself. The way it almost takes away my social anxiety completely is so devilish and enthralling because I know how I’m killing myself slowly. But the “benefits” are too attractive to let go easily. It’s a terrible, depressing cycle.
Well said. This made me cry. I was diagnosed last year at 26 years old. It is very insulting to me to hear someone who as she says has been involved in the autistic community for 20 years saying that i and people like me shouldn't have been diagnosed with autism. My diagnosis made everything I've gone through make sense and it has helped me to be kinder to myself and not be so hard on myself. In many ways it has saved my life. No, I did not need speech therapy but i did need help specifically on account of being autistic and I did not receive the help that I needed. And that does not take away from the hard work that Abbey undoubtedly put in.
Thank you for speaking so articulately and compassionately about this. I love hearing your perspective on things.
I hate the argument that the "spectrum is being diluted/widened" bc it was never that narrow to begin with. I was diagnosed in 2006 at around 3 or 4 years and im a low support, afab, verbal, motor and intellectually privledged autistic person. It was incredibly rare for someone who presented like me to get diagnosed so early, but I did get diagnosed because I FIT ALL THE DIAGNOSTIC CRITERIA!!! the only difference between then and now is that there is an exponentially bigger amount of awareness on how autism can present in minority groups and low support autistics which i think is a positive thing.
Also, even as someone with minimal support needs who's probably the kind of person christine is describing, I still struggle in ways i notice my allistic collegues dont because it is a disability.
I didn’t know I was autistic and had adhd as a child and it was difficult as hecc. I am now a 25 year old man.
I do remember three teachers in my life that did so much for me:
One teacher who let me draw in class, because she knew that I needed to do it to regulate.
One teacher who treated me very kindly and calmly, maybe not understanding exactly what I was going through, but they saw my meltdown during sports and they always asked me if I didn’t want to do something and tried to accommodate my needs.
And then one teacher, who actually contacted a psychologist, handed me the email address and the number in private after I had to leave class because of another meltdown and calmly spoke to me about ADHD and autism and being so kind and patient….
I was incredibly lucky! There were bad teachers too, but these three I will always remember.
And I was LUCKY!
I know people who haven’t had that kind of support and they sadly are no longer here, so hearing Abby’s mother dismiss autistic people like that is making me very angry.
It still sounds like Christine doesn't understand the concept of comorbidity? The other disorders that come along with some people can be why they are higher support needs in many cases. I wish she'd champion the related actual diagnostic terms like Speech & Language pathologies instead of assuming autism isn't autism without those other diagnoses.
Exactly. I suspect her daughter has an intellectual disability - correct me if I’m wrong. But the things that she defines as autism in her own head are mostly things that are due to the intellectual disability, not even autism itself. Not talking isn’t even in the autism criteria, it’s in the intellectual disability category. Theres the separation and recognition she’s looking for right there. Her daughter has a different diagnosis than a level 1 autistic person already.
I was hoping someone else was thinking this also! I hadn't heard of "Communication Disorder", so I decided to look it up and found there's such a thing called Social Communication Disorder. There's been plenty of discussion surrounding how that's _not_ the same as autism, despite some of the similarities and the possibility for comorbidity. I hope she takes the time to do some research on the topic!
Exactly!
I was also thinking about this. Not everyone autistic has an intellectual disability.
Yes! How many “level 1” autistic people have invisible disabilities and how many “level 2/3” autistic people have more noticeable physical and intellectual disabilities? It’s almost like it’s not about how “profound” the autism itself is …
I grew up in a home with parents who didnt believe in mental health issues, and i was homeschooled. I nevrr got to opt out of anything no matter my feelings. All my negative feelings were responded to with "too bad". Ive always had to push myself beyond my breaking point my whole life. I never got treatment, i never even got a diagnosis until last year (31yo). But i guess that doesnt count to christine.
Edit to add; i didnt even get to "stay home sick". I did school rain or shine sick or healthy. "suck it up"
@frybabyofficiak I feel ya. 💔 In the 90s/00s, I attended a tiny, rual school where my mom was a teacher, so I got similar treatment.
It's been so challenging to navigate my relationship with my mom my entire life... I never understood why I had such negative feelings toward the person I thought I 'should' be closest to when there was no obvious 'reason' for me, quite honestly, not to like her since I was a toddler. I carried so much shame, guilt, & confusion about that for over 30 years.
I know all the pressure to mask & overachieve academically was due to how my parents were raised by their depression era parents & they were just trying to push me to be able to succeed, but it was turamatic, to say the least, & being able to accept that it was has been absolutely healing. I was the last graduating Valedictorian of my school before it was consolidated, so not being able to 'be a functioning member of society' once leaving my parents was so incredibly confusing for over a decade.
I don't know if we'll ever be able to get over all those years of invisible suffering, but at least we can understand a big part of why it happened.
for sure! People like Christine don't understand abused and neglected autistic people. She only thinks there is one way to look and be autistic and it's so insufferable.
Yup, my parents even believed autism was a sign of a spoiled child who was not receiving proper discipline. If I tried to opt out of anything or expressed discomfort at anything, they would just push me further past my breaking point, then punish me for breaking.
There were times I was so clearly overwhelmed and shutting down from school that I was sent to the nurse's office & my mother was called to pick me up, only for her to say "if she doesn't have a fever & she isnt throwing up, send her back to class" and hung up the phone.
I seem fine because I was repeatedly broken as a child until the point that "mild" suffering feels blissfully relaxing & free.
@@LilChuunosuke This is very familiar to me! I'm sorry you had to go through that too - it was horrible feeling so isolated 💚
Oh wow your childhood was really similar to mine. I grew up around a family like that too where any weakness was punished. I've been suspecting autism for honestly like 10ish years and now that I'm 30 I'm barely coming to terms with the fact that, like... yeah, that's what it is. I tend to push myself to breaking point too. I really don't want to. But it's such a deeply ingrained survival mechanism and I go through life with so much anxiety that I can't really shut it off.
I can only speak on this issue as an allistic person. Christine seems to be fighting for validation of her daughter’s experience which is something that was referenced in Thought Spot’s reaction videos. I feel like Christine doesn’t want her daughter’s experience invalidated by others getting diagnosed, but she doesn’t see that she’s invalidating thousands of other autistic people by platforming her opinions (which are based in emotion) on social media. She is spreading misinformation and causing heartache. The conclusion I’ve come to as an allistic person is that allistic people have no right to define or label the autistic experience. The lexicon we use to describe autism needs to come directly from autistic people, not their allistic relatives and friends who have opinions. There needs to be a space where autistic people create a community based solution without interference from allistic people.
Yes! Thank you
Well said! @blu_heron
Agreed. Especially for the DSM. Why are we still diagnosing autism and other developmental disorders based on neurotypical perceptions of us, which are often inaccurate? Like how they still believe we have no empathy or we can’t learn new skills. How about doctors actually start listening to actual autistic people about our internal experiences instead of defining us based on their biases and stereotypes?
It is hierarchical thinking. Christine spent all this time and money to help her daughter present as less autistic. In her mind those of us that are high making didn't need all of the therapy to be "normal" so we aren't as disabled as her daughter. Since her daughter might have alexithymia perhaps they do not communicate much about how she experiences her autistic world and the challenges it gives her. It is a very old school view of the world, that disabilities must be seen by others to be real. I could list all of the ways autism limits me but because I am highly verbal I am not as disabled as her daughter. It is really unfair to all of the autistic people that forced themselves to overcome difficulties without therapy because they either did so or they didn't survive. The prisons are filled with autistic people. The streets are where we often live. And when it gets too much we end it, lots of us are not surviving in this life.
@@karenholmes6565 Thank you for your response. The truths you speak about disability provide much more context than I did and go deeper than any statements about the harm Christine is creating as just being a generational issue.
"Not everyone has the luxury to be disabled"... This might be the most accurate and distressing statement to ever be said. As someone who struggles through life having constant meltdowns because of work but not able to be unemployed, this hits home. I wish I could "opt out" of having to work just to survive.
I appreciate where she's coming from. She and Abby have clearly been working super hard. All their work doesn't need to come at the expense of others, though. This is the opportunity to bring more people in. She could be such a big help with everything she's learned, but instead she's trying to gatekeep.
Loved the way you expressed this!
Agreed. I see the love Christine holds for Abby and the hard work that that they both put in every single day deserves praise. But that shouldn't come at the expense of others, especially those whose support system did not accommodate any of their support needs.
When I advocate for better access to support as a medium support needs autist, I'm not just fighting for myself & for low support needs autistics. I want Christine to be able to access the services Abby needs virtually effortlessly.
Bringing more in is exactly what Temple Grandin advocates too.
The "just because they had to doesnt mean they could" just made so much click. I struggled badly and slipped into depression by the time I got to highschool and NOW I realize I started to get less help/assistance as I got older because my parents thought they were giving a neurotypical child independence. The less help I got the more overwhelmed I got, I was tasked to cook and fend for myself at young age which led to burnout. As a Black neurotypical woman I was struggling (and still am) to keep up with the real world. Sidenote: I loved your expressions in this video, I getmore expressions when I'm frustrated and passionate about topics too. 😂
I am very excited for this intersectionality discussion. You have great content. As an autistic guy who is less than 1 year into my diagnosis, your content is riveting. Keep up the good work. I feel seen.
I’ve been known to say, “I would love if all my experiences as an AuDHD individual were brought to life through love, support and affirmation. Unfortunately it was brought about and met with abuse, neglect, a dismissive attitude and disdain.”
I’m really happy for Abby to have been able to experience their life with support and compassion coming toward them in regards to their differences and deficits. I wish that for all autistic people. There’s just so many of us who didn’t have anyone around like Abby’s mom or didn’t have the resources Abby’s mom has had access to. I hope this is a turning point in that story though.
Thanks for this video ❤
Agreed. Like I dont like Christine, but at the end of the day, I recognize she is a mother who loves her disabled child and is doing her best to accommodate her needs and is simply failing in some areas due to a lack of education.
I'd pick having Christine for a mother over my own mother who tried to beat the autism out of me for nearly 20 years any day of the week. I empathize with the fact she has struggles I'll never experience, but I *also* have struggles she will likely never face as someone with parents who went out of their way to remove any accomodations I had and attempted "cure" me with "exposure therapy."
Yes, as a 53 year old woman who was not diagnosed as a child nor accommodated I did acquire a dual diagnosis of bpd and bipolar 1. I strongly believe had autism/adhd been recognized early these acquired mental illnesses would not have been something I would have been also challenged with. But indeed to be in a world that is not made for me and schools not made for me, my life up until retirement at 50 was unsuitable. I am now able to accommodate my needs and my mental health has improved to the point of not requiring psychiatric help or medicine.
Not me having nightmares about grade school. I'm going to be 30 this year. Yeah I got through school. But not unscathed.
My recurring school nightmares only ended when my kids were gradeschool age and even now in my mid 40s I still have occasional school nightmares.
Ooh same
Im almost 26, and recently my dreams have become very similar to each other structurally and always include elements of kindergarten/schools/hospitals/apartments/houses and various everyday shit i have/had to deal with daily, responsibilities, and then mixed usually with internet and some supernatural-cosmic-sci-fi-anime-games stuff here and there 😂
I'm almost always Me and almost always aware of the dream.
So, for me, nights are kind of exhausting. And i am often stuck between not wanting to be awake and conscious and not wanting to go to my dream purgatory again.
I know, realistically, i just need to fill my head with other better stuff.
Still have them at 39 here!
Funny thing is that I am a level one autistic diagnosed as pdd-nos at 5 years old. I went to an “autism” school as Christine describes, I had OT and was apart of a social skills group run by a speech pathologist. But to Christine I am not autistic because I hit all my developmental milestones early and have a bachelors degree in Communication. My autism really affects my life. I am 28, still live with my parents, and only now have my first job interview ever on Wednesday for a video editor position at a local university. I wish Christine would stop the infighting, because despite Abbey having more needs than me I can relate to her a lot. In the jubilee video when she mentioned not knowing how to have conversations with other kids as a kid and would have conversations with herself in her own little world, I would do that too. One of my best friends from middle and high school is autistic and couldn’t speak in full sentences until she was five and that doesn’t make me any less autistic because I spoke my first words at 10 months , or my friend any less autistic because Abbey might’ve took longer than her to speak.
Some autistic people hit some of their milestones early.
@@karenholmes6565 I hit most early but some late.
I don’t think I’ll ever have the spoons to watch this, so am commenting for the algorithm ❤
I know what you mean, I watched it and now I feel extremely disregulated!
Fair enough! I just watched it and now have an intense drive to engage in my special interest while pacing and bouncing around to calm myself down. Unless you want to feel the rage of invalidation, don’t watch. ❤ Take care of yourself!
I think I read a comment on one of your videos which helped me understand the spectrum better. If I remember correctly, the person compared it to eyesight problems, explaining that there aren't blind people on the one side, and people with perfect eyesight on the other. Some people might need reading glasses, while others will never be able to see certain colors... You wouldn't deny glasses to someone because other people can't see at all. And thinking back on what you said in this video about different access to diagnosis or accommodation... people who didn't get access to glasses early enough will have less chance of succeeding in school or get very debilitating migraines. I'm glad I live in a country where I get to wear glasses even if I could manage without. (Unfortunately, even if i'm able to see people's faces from a distance, I'm still terrible at recognizing people I know if they aren't in a context where they are supposed to be 😅)
Using deficit based language for your own kid is also something I don’t love. Like autistic people using deficit language for themselves is fine, but it’s giving Autism Mom and I hate it. She’s like oh my daughter is “really” disabled and these new ones aren’t. I hate it here. This lady is pissing me the hell off. It’s such a privileged perspective, and such an out of touch one.
I desperately needed the help that this woman's daughter got and didn't, but now I'm apparently just part of a wave of qUiRkY women getting diagnosed with autism for funsies so that we can devalue her daughter's socially constructed title of "functions fairly well but is *actually* disabled". Because I don't see how others finally getting their disability recognized is some sort of attack or takes any sort of resources away from her and her daughter. It's all about "stay out of my exclusive club that I got into by having money", which worries me that the underlying anxiety is about some sort of money stream.
This. It's exactly this. The Netflix show isn't enough for Christine, not enough support and privilege for Christine, she just has to use the platform handed to her to try to negate the rest of us whenever all we call for is inclusion with research, care, advocacy, community etc. No, people like Christine don't see that as important because she feels it infringes on her (it does not). I'm willing to bet she applies this type of thinking to other areas of societal/cultural topics.
when i was little i did OT and music therapy. i had no diagnosis but i was having developmental delays and behavior problems. i was diagnosed until i was 14 (two years ago). i bet christine wouldn’t think i’m autistic. but i am! i struggle every day with communication, i’m currently on the wait list for speech pathology bevause i have a lot of issues with sarcasm and idioms. but we are all different!
It's good to know that Abbey's mother was fortunate enough to have the privilege to give her 20+ years of speech therapy and music therapy and the like. That being said, I wish Christine could show more compassion towards people who didn't have that privilege.
I really appreciate your kind and understanding approach on things like this. I think its important not to demonize people like Christine, because it allows space for her to feel safe considering other view points, as long as we're not harassing her, and we're meeting her with the kind of genuineness that you do.
I’m with you on a lot of what you said. As someone who has debilitating health issues and comorbid mental health issues as an adult due to having to mask and cope in this world with no help or instructions on how to do so healthily, wanting to be not be alive for so much of my life, I’m really upset about how insensitive she comes across as. How can she just assume and generalize our experiences like this!? I’m not just “different” - I have had a deficit this whole time and I’m suffering now. Now it’s not just a deficit but a disability because I cannot work at all. I can barely function. I’m so upset at this.
It's crazy because SO MANY late diagnosed/late realised autistics look back and think about how much better their quality of life could have been if they were given those sorts of accommodations and therapies. Just because we weren't given them doesn't mean we didn't need them or wouldn't have benefitted from them.
also, what about autistics whose needs change over time? Like someone who used to be nonverbal, in special education, needed therapies, etc. but is now able to verbally communicate and comes across as allistic to the general public (through masking)? Does she want them to then lose their diagnosis? Or are they still valid because they did need speech therapy...? like???
@@elevenoutof10I have a nephew who was speech delayed, nonverbal at three years old. Then he started to talk, a little. But when he got to full sentences, we realized he was quoting bits of scripts from his favorite kid's movies that he watched at least once a day without fail. Echolalia. He was sent for instruction in the local school system's autism program as a very immature four year old. He transitioned at midyear from this class directly to first grade. I was astounded, remembering my own social struggles in a normal 1960's kindergarten. As a 5 year old (barely). Back then, kindergarten wasn't about academics, it was about figuring out functioning in groups without harming each other. I probably got a low score on that. One of my former classmates still bears a small scar I gave him in retaliation for being bullied.
I’m also level 1 and struggled so much in school. I honestly gave up on academics and went super hard on my special interest (Flute.) I remember in the Jubilee video when Christine started going off about that if you can drive, have a college degree, live independently, etc that you shouldn’t be labeled as autistic.
Yes, I have a degree, can drive, and live with my partner, but it’s been a huge struggle. I didn’t get my diagnosis until Fall 2022 at the age of 30 so I thought I was broken my whole life. I had no idea why I would have meltdowns in auditions/orchestra rehearsals, despite loving music. I also had no idea why I would lose friendships, why I was labelled as “overdramatic,”why my lows were low and highs were high. I never knew why brushing my hair would make me cry, why I hated sarcasm, and why I had a hard time learning.
Sorry for the rant and awful grammar, I just have so many thoughts and feelings swirling around. Basically, there are lots of different difficulties and deficits autistic people deal with. We shouldn’t invalidate any autistics and we should listen to autistics who experience/process the world differently from us. I hope we’re able to be more united within the autistic community ❤
You don't have to apologize for ranting about your autistic experiences and stuggles! this is a safe space for all autistics and neurodivergent individuals :)
Here, here!
This is the one place you don't have to apologize for rants!
Honestly, I'm starting to get a bit wigged out about how much sensitive/personal background I'm in effect giving to g..gle about myself.... but it is what it is & it's helping me & hopefully helping others, too. I guess it's really the internalized ableism...
_"They're_ gonna find out I'm not right in the head!" 😝
@@lovelyxrosez6589 Thank you, I appreciate it sm 🥰🩵
@@EmilyFPC It’s nice to be able to rant! And you’re not “wrong in the head”, we’re actually autistic 💕🌻 ^.^
@@EmilyFPC😊 I definitely had similar thoughts before the word autistic entered my vocabulary, and the thought that might be why my life has been as it was.
Going non-verbal is extremely frustrating and debilitating, I don't usually have meltdowns but not being able to communicate gets me very close to having one. My brother (whom I live with) gets irritated and don't understand, and it's so hard to talk about this and explain it to him.
"We shouldn't measure our autism by our struggles" Thank you for this ❤I'm not diagnosed yet, but sometimes I feel like I can't be autistic because everyone seems to suffer a lot more than me. I know that's not a good comparison point, I'm trying my best and hearing you say that was very validating, so thank you.
15:58 this is actually a reason why i have had so much self deletion thoughts and even attempts, bc i felt like i couldnt survive it. But i was lucky to survive it. If you set the bar at surviving, that can mean you need an autistic person deaths to take them seriously if they didnt have all the help they needed. I was forced to talk. To learn it all by myself, still struggling. I always hated talking... It hurts
It does hurt!
Yes emotionally, but sometimes physically, too.
Forcing myself to speak in a shutdown/ selective mutusm / catatonic state is so incredibly painful just below & around my vocal cords!!
Is that talked about?
Also, it's so embarrassing how little control I have over my voice in those situations; some ridiculous pterodactyl like squawks that are barely intelligible will come out.
It's like your trapped in or betrayed by your own body.
I wish more people could understand what it feels like to experience that. To know what you want to say, but physically not be able to.
When it's not to a breaking point (so like any time I fear conflict or something tense has happened from my perspective) I usually have to say what I mean with different words as a work around after an akward pause. Except I then have to over explain in order to kinda get back to what I meant bc I realize the person isn't really getting the message I truely wanted to send to them. I'm pretty sure that's a factor in my large vocabulary that I know is a common autistic trait: saying things in an odd manner, or in an old fashioned way (as Orion Kelly pointed out in today's video).
It's like mental gymnastics just to ask for someone to pass the butter. I'm not even kidding. It's over the simplest requests that would in no way be inconveniencing the person.
I just do without usually.
The sad thing is that now I can see that my inability to convey the most menial of my needs is in effect hurting my relationship with the person WAY more. So even though I am in fear of harming their opinion of me, I'm now simultaneously aware that being unable to communicate is what is actually damaging how they view me.... I just seem like a shell of a person & they don't stick around.
This is something I say all the time. If we need to die to prove our needs aren't being met, they never will. The stress of attempting to perform at a neurotypical level quite literally caused me to suffer from a handful of mini strokes in my teens. The fact I am alive now is a miracle that came down to the size and density of a series of blood clots. Apparently, because the blood clots were small enough to not be fatal, I don't need accomodations and I'm just "neuro-different."🙄
I also feel you on the speech thing. Was minimally verbal my entire childhood. Only spoke when I had to & said as few words as possible. Only reason I taught myself how to speak was bc I was constantly treated like garbage for not speaking. I'm in my mid 20s and unscripted speech still regularly comes out slurred and unclear. Many people in my life think I'm this chatty, charismatic comedian, but I only do that so they see me and treat me the way I want to be. When I unmask, I stop speaking almost entirely and get frustrated when people try to talk to me.
@@LilChuunosuke feel ya!
@@EmilyFPC Yes, I relate to the forcing talk when shutting down. Also, sometimes when I look at an object (like butter on the table) my mind forgets the word for it because I am seeing it. So I point at the butter because I temporarily can't remember the word. Then people say that I am being rude for pointing and not asking for it to be passed at the dinner table. Agh!!
@@Catlily5 I can feel ya there! "On the tip of the tounge" happens to me suspiciously often & I suspect could be a demand avoidance symptoms for me.
It's like my brain to mouth connection is taunting me:
_"Oh? You want to spontaneously talk about something or someone asked you about something your are in fact excited to share/info dump the answer because you know it well? Hah, Suprise!!! You are not allowed to access the file cabinet in your brain that contains that simple word you've known since toddlerhood! And, you cannot Pass Go until you remember the word because You Do Know It, don't you?.... Try answering their question/complying with that demand now! Muahahahaaaa!!!!"_ 😈
It leaves me feeling like such an idiot... like how can I do (more like _used to do_ ) complex mathematical calculations for fun but not remember the word butter right now....
🤯😵💫😔
Those gaps in our skill set are a very real thing & it's ok!
😛☺️
Neurodifferent and neurodeficit is giving the same vibe as high and low functioning. We stopped diagnosing people by their deficits and started diagnosing them by their support needs for a reason.
I am level 2 so where would I fit in with that division? I am not neurodifferent. I am on disability. But I wouldn't be severe enough for her neurodeficient category.
She has a very narrow perspective on autism. I have learning disabilities. Sensory issues. Motor problems. Cognitive issues with emory and behavior. Processing issues.
She is really looking through a fixed cilinder at autism.
P.S. what is her problem? . Why is she gatekeeping autism. Why exclude those with symptoms that are less immediately obvious to others. Someone can appear totally normal for 8-9 hours a day and become dyfunctional and crash at home. Until they cant function no more for that 8 9 hours at work.
Exactly! 💯🎯
its just ableism based on an extreme experience dealing with an autistic child.
👀💯👏👏👏🎯❤️🩹🏢🧟♀️☠️
My feeling is, that she needs people to validate HER specific struggles as a mother to a high need child, because it will counter her feeling of ‘loss’, that her beutifull girl ‘derailed’ her life by being ‘deficit’.
Many parents do the same work she does, and don’t need to swim in praise to cope with that. Invalidating others to validate yourself is both ineffective and isolating.
@@jo45 agreed! I belive you nailed it.
I wasn’t diagnosed until I was 32, and it really only happened because someone noticed in my history that I had struggled hard and consistently my entire life, and they wanted to hear me out since the autism assessment was technically “inconclusive”. After much discussion and further evaluation, I did end up with a formal diagnosis. After that (and still to this day) I had to mourn the life I could’ve had if I’d been diagnosed earlier. My life has been MISERABLE due to my neurodivergence going unnoticed my entire life. Even now I struggle daily (being forced to work full time will likely put me in an early grave if I’m being honest), and it’s partially because I’m constantly having to fight against the (for lack of a better term) ignorance of people like Christine who think that my outward ability to “function” in society means life isn’t painfully difficult for me.
I don't even know how to exactly explain how this is so infuriating. I am in my mid 50s now, but I grew up in a literal cult, where we wouldn't take people to the doctor even if they were dying. In the 1970s, I was spanked at public school for stimming and shutdowns. At home I was beaten for emotional disregulation and being annoying As I started doing poorly in school, instead of getting help, I was pulled out and homeschooled. Somehow I was able to graduate via distance learning, which back in the 1980s was not done electronically. So, I don't doubt there was some fudging involved in getting that diploma into my hands. I tried to go to university and was able to squeak through two years and get my AA, but I did have to beg for some grade changes. Because I was not allowed to have friends outside the cult (even the college that I went to was associated with the cult - there's a netflix episode re the cult and univ), when I was told by my family that I was an adult at 20, I was out and on my own, literally - alone. I first lived in my car, but was able to find a job at a pizza restaurant. How did I cope in the 1980s as an undiagnosed autistic person on there own: drugs and alcohol (something I still struggle with) Eventually I was able to have a desk job bc Im good with numbers. Finally I met a spouse that financially has taken care of me, until now... he's dying, im old, im autistic... and I don't even understand how this lady Christine cannot understand there are people like me and so many others that literally fall through the cracks... listening to this is very disturbing. I want to scream!
Im sorry your life has been such an uphill battle. Im glad you were able to get out of that cult and I wish you and your husband the best. ❤
I am homeless, on disability and autistic and have struggled my whole life as I wasn’t diagnosed until I was 50, but nobody would know it to look at me because people tell me I don’t “look autistic” 🤦♀️ but most of my struggles are not seen by anyone else because most of them are inside my brain! Except for the very embarrassing meltdowns and social deficits, but to most people I just seem “quirky” or weird. I tend to isolate a lot as it’s easier and it’s how I recharge my own batteries so I can handle social interaction in small doses. I’ll isolate for weeks leading up to a social occasion to “prepare” then isolate again afterwards to recover. Do the people who see the bubbly, outgoing person I am know that? Nope! Masking is EXHAUSTING! Plus I always overshare, talk too much, have face blindness, can’t look people in the eyes and usually end up kicking myself with shame for never “getting it right” when I’m humaning and being made acutely aware of the fact that they all think I’m weird. On camera on my TH-cam channel I get to have chats without the pressure of these things so I really enjoy that. I only recently became monetised, so I’m hopeful that will bring in a small but much-needed supplement to my income as I’ve failed at every job I’ve ever had. I sometimes go busking for extra money, but it takes a lot of confidence to do so and sometimes I’m just not up to it. I have zero support from my family who just think I’m an awful person (you made your bed, now lie in it types) and have just had to learn how to cope on my own because I had no choice! It’s hard to explain my limitations to people and I prefer not to, so that makes me prefer being on my own too.
Does this make me less autistic? No! I had no choice but to muddle my own way through life!
We all need to expand our awareness and cross the divide between us. Fight the good fight, not each other. Christine seems to have a helicopter parent mentality. She has to realize that protection and coddling are not the same. That said, how we express ourselves and the terms we define for ourselves, officially and personally, are valid. I think they can become interchangeable and distinct for everyone on the spectrum. Experiences are vast and changing. It makes sense that our definitions can adapt, too. Sometimes, I'm nonverbal because of too many stimuli. Sometimes, I'm nonverbal because of the masking and preparation that takes a toll on me. There is no fast and convenient answer all the time, only diversity. I liken autism to a rock. Some of us are more permeable than others on the spectrum, but that does not mean our experiences should be put on a superficial or judgmental scale that sets us apart. Our nuanced differences need concrete diagnoses to cope with the difficulty of typical processes and ways of being. It would be interesting to see Irene interview Christine.
Two recent videos that hit me profoundly and were validating for me with my late diagnoses of multiple syndromes and disorders.
- Changes in the concept of Autism - Gresham College
- 2023 Connecting the dots between autism, adhd, dysraxia, EDS and More - The Ehlers Danlos Society
Titles aren't exact, but both released late March 2024 on channels Gresham College and The Ehlers Danlos Society.
Found then validating and was willing to send the links to immediate family for increasing their limited or non-existent awareness.
CW:
I have an official adhd diagnosis but my father does not believe in psychotherapy, so it was untreated until I was 18. Multiple doctors recommended testing and medication, but my father was too embarrassed to have a child with a mental disorder. I saw a psychiatrist once when I was 8 after expressing suicidal thoughts. I struggled so much in 6th grade socially that my parents decided to homeschool me for a few years until high school. I started “treatment” from a non-licensed Christian “therapist” in high school before it got bad enough to warrant an actual doctor. After initial diagnoses of anxiety and depression at 18, I was diagnosed with ptsd then c-ptsd in college. I’ve had multiple hospitalizations, only one of which was voluntary, which resulted in PD-NOS, then BPD and bipolar. After 15+ years in therapy, I finally had my new therapist ask if I’d ever considered I might actually be autistic. I remember when I first had a diagnosis of ptsd, I struggled to empathize with anyone complaining about things that (at the time) felt minimal compared to the trauma I felt I was experiencing. But that was a really unhealthy way of conceptualizing what is valid. There’s a phrase people use a lot to minimize others’ experiences “there are starving children in Africa”, which, yes, is true. But that doesn’t make my need for food today any less valid. I’ve definitely raised an eyebrow before when my coworker (with the most incredible executive functioning skills I could imagine) joked about being ADD because she paused to read an email. But I don’t know her experience, and I don’t want to gatekeep it if it would prevent her from help she may need and be hiding.
This has begone to be some sort of weird competition for who's the most miserable, get the most attention on social media and winning the autism (sometimes I think if that was this easy, I would've forfeit my autism long ago). Maybe because today hasn't been a good day, but I can't say I could take so much bs and get something constructive out of it, or even tried to appealing to these people having dogwater opinion then going with it as if it was fact and having this need to invalidate other experience of autism or struggle just because their feelings says so, I think you are a courageous and very tolerant person.
Agreed. Although how we all struggle and are disabled by our Autism is so important to talk about, I believe talking about other aspects of our lived experience is what is ultimately most important. It's also more humanizing.
I really get what mean but this is tiresome, even in my close family I hear some kind of varient of that stuff again and again, sometime from "that" same person believing this all made up or saying you an adult now and that a you problem with some guts you have to "get over it". Sorry I know I'm ranting.
Im AuDHD ~ not officially diagnosed Autistic, only got my ADHD diagnosis 2 years ago at 22.
I had significant issues with being recognized as needing support...but I was continuously bullied, even by teachers, family, and healthcare professionals about my neurodivergent traits and needs.
About a year and a half ago, a therapist that I was only able to access because it was publically funded, tried for over a year to get me connected to OT for sensory issues (bc she recognized & accepted my Autism)....and the people running funding/service allocation just decided I wasn't a priority. Just because I didn't have a diagnosis ~ despite the fact I was having severe bowel issues from not eating & stress, sensory meltdowns & shutdowns, burnout from attending classes everyday (bc my college also refused me accommodations for part time study), having migraines and other neurological issues (like unequal prolonged pupil responses and tingling/ numbness/weird blood flow changes to my extremities), chest pain & abnormal changes in heart rate, etc....
A great combo of Autism + stress + trauma response 🙃
That's just this last couple years. It sucks to say that honestly I've been through worse so them denying me this basic support was not even a surprise really. I had to self-accommodate to survive....and without support from my Autistic partner & best friend I would be dead. My life was hell & I was honestly suicidal on occasion.
^But again, not my first rodeo. So I just had to...survive...somehow.
The reality is support for Autistic people is just nonexistant. The funding is not there unless you have connections & privilege.
My brother was diagnosed at 6 as 'moderate-low functioning', and my mom tried to get him transferred to a disability-oriented school. He was visibly disabled and it still didn't get him the supports he needed. He was also bullied by peers and teachers, and had minimal funding to get the services he needed. Being low-income my mom couldnt afford to shell out thousands a month to pay for everything he needed in professional supports.
The problem is ableism; like you said ~ it doesn't make sense to her bc she is living in an ableist worldview. In order for her to justify her position, Autistics who are worthy of support get it and look like XYZ. People like myself, my brother and others with similar experiences just...can't exist.
This touches on something I have been thinking on, and am profoundly struggling with. A mild conflict with a friend showed me that they don't actually know me and we don't give eachother the opportunity to do so - because they have a very binary view of what autism looks like, and because I mask so heavily. But I have no choice. It's a catch-22. If I'm open about my struggles, it scares people off - understandably so. And it's nobody's responsibility to integrate me. But at the same time, when I myself can't carry the responsibility to care for myself and I don't have actual access to support... Then who does? In order to gain access to support, I'd already need to be receiving it. But I don't, and I don't. And so I'm left behind.
So, at what point does your struggle actually become real? At what point have you suffered enough to be valid? When you take your own life? Just because I'm alive, barely, doesn't mean I truly survived. "Just because I had to doesn't mean I could." I simply never had been given a real choice.
Your last paragraph made me cry! This really hit home for me.
I feel you. Im alive, but I'm broken. I almost gave up in my teens. I almost died in my teens not just from an active decision, but from mini strokes I suffered from the strain of being forced to perform at a neurotypical level.
So because i found someone to talk me out of it and because the blood clots in my brain were small enough to be broken apart by the pressure built up behind it, I don't need support? That makes no sense to me.
Wow. I was also giving Abby's mom the benefit of the doubt after that jubilee episode, but after this one, I have chosen my side. She is a huge gatekeeper who really seems to have no idea about any kind of autism except Abby's. Just because we don't have a severe speech deficit doesn't mean we don't have other severe deficits. She needs to stop trying to gatekeep autism support from others who need it besides her daughter and people exactly like her. There are all different types of autistic people out here struggling every day and she isn't helping us by being so persistent about how only people in speech therapy have autism and the rest of us are just, what? Faking it?
Also, I 100% agree about not having access to help. I am late diagnosed, and there was no option for me to NOT go to school. Instead I had nightmares and threw up and cried and had meltdowns all the time and my parents said I was a bad child and I had to keep going to school and then work while struggling inside (and having meltdowns and nightmares and throwing up and crying), wondering why it was so hard for me. I really wish I had had someone to advocate for me and give me the assistance I needed. I would have taken that key and opened my cell a long time ago too. 😢 I have terrible PTSD just from trying to keep up with everyone else and fit in my whole life (and the mental abuse from my family for being the way I was). I was thinking of "opting out" when I decided to get therapy and found out I'm autistic. Now I feel like, knowing that, I can keep trying and see what life is like with this knowledge about myself instead of quitting. My "opting out" thoughts have quieted a bit since then because now I know I'm not the only one feeling like this.
@@m.r.228 💯 agreed!
P.S. totally beside the point, but I'm glad I'm perhaps not the only one who rereads & has to edit their comments... 😅 esp long ones. I've made myself copy, delete, recomment, & paste about 95% of the time & very recently I'm realizing how ridiculous it is that I feel compelled to do that. So what I wanna fix my comments, I don't need to hide that!
Also some of us had severe speech deficits that we outgrew! Cambridge's youngest black professor is autistic & didnt learn to speak until he was 11. Didn't learn to read until he was 18. He looks "normal" or "neuro-different" now! I also definitely needed speech therapy as a kid. I was minimally verbal until my late teens/early 20s, but did not have access to speech therapy & learned how to speak on my own.
An ADULT being able to speak clearly & neurotypically is not necessarily a sign that we did not need speech therapy as a child. Many of us did & never recieved it.
@@LilChuunosuke😊 My mom, having been an elementary teacher before she met dad, made time to read out loud, in the firm belief that her own command of language and tone expression being given as frequent examples would make it easier for me to do the same as I grew up. That was the only "speech therapy" I got. That, and she had me reading out loud to her at proper grade level comprehension.
One of my nephews was speech delayed, but after early intervention, he became hyperlexic!
@EmilyFPC Edit loud and proud! Lol! I constantly find mistakes in my writing, no matter how hard I try to make it perfect the first time. I never thought to make a draft elsewhere and then post when it's perfect. Not a bad idea! Especially for platforms that don't allow edits. I'll have to try that sometime.
I am now 43. I was diagnosed at 39 in 2020. I’d been through chemo the year before for stage 4 uterine cancer and I went through a full hysterectomy. In 2020 I was talking with a very distant cousin and we learned something traumatizing that had happened to us both as children. After that, I suffered a complete psychological breakdown and checked myself into a psychiatric hospital. While there the nurses exhibited “peculiar behavior” from me and said, “you forgot to mention you’re autistic”. I looked at them shocked and dumbfounded but curious. I’d always suspected I might be autistic but I didn’t “look/act” like how media portrayed autism.
They assessed me and said, “you meet a lot of the criteria to diagnose you with autism spectrum disorder”. When I tell drs I’m autistic, I immediately get the, “no you’re not you can’t be, you communicate really well and can hold eye contact”. I then tell them that is masking but it’s very difficult. I rehearse my appts before going. I even rehearse conversations for people I haven’t seen in decades but what if I run into them at the store one day. I’ve eaten the same thing since middle school. If I’m in public and a fire alarm goes off, my hands cover my ears, I start having an anxiety attack and squat down into a fetal position wherever I am standing. Interacting with people outside of my immediate family is excruciatingly exhaustive…mentally, emotionally and physically.
As a child I was considered a free spirit cause I did my own thing. I’d spin around standing in one place several times a day. I flapped my hands, I walked “pigeon toed” and was put into ballet at 3 to “correct” my feet. All it did as make me self conscious and give me bad feet, but I did love ballet. I’m back to walking pigeon toed. Lol😅
In the 80s and 90s there wasn’t a lot of talk about autism. And despite suffering academically from about 3rd grade to 12th grade, my parents couldn’t afford medical bills much less a tutor. Not to mention they were consumed by their toxic marriage.
You mentioned how many autistic people went undiagnosed and ended up ending their life due to the struggles and I relate to that so much as I had had multiple attempts. How many people have lost their lives due to not being diagnosed properly? That is very sad to consider.
I didn't get diagnosed until I was 36 because I was a "gifted" child and my brother had more "profound" behaviors. I received no support for my needs and was instead labeled as difficult, emotional and sensitive. I can say that being undiagnosed TRAUMATIZED me and I am still repairing my self esteem.
While level 1s talking over Level 3 autistics is a real problem that can persist in different online spaces (esp on tiktok), the same problems exist with parents of autistic level 3s removing autonomy or generally talking over their children. While I'm not at all accusing Christine of that, the distrust between more verbal Level 1s and parents of Level 3s can run both ways - After all, Autism Speaks wasn't created by Level 1 autistic people! And yet it threatens us all.
There is definitely a productive conversation to be had between different types of struggles (and most often you hear from the support system of Level 3s in these types of discussions and not the individual themselves which I also scratch my head over sometimes) and I don't think we need to be on opposing teams, intersectionality HAS to be talked about. All too often in psych, getting the right (or any) diagnosis depends on race and class privilege, and often removes autonomy from disabled people in the process. These are the problems we should be talking about, not just "autistic trenders"
Thank you for covering this. I’m a late diagnosed level 1 autistic who works a part time job now. I’m so grateful for being diagnosed because the view I had on myself prior to being diagnosed autistic was so bad that I felt the next job I was going to lose would have been proof for me that I was fundamentally unable to improve. I’m so lucky that it was during my last full time job that I was diagnosed because when I ended losing that job due to my bosses actively sabotaging me despite me active expressing the accommodations I needed, my knowing I was autistic and over the 9 months before I lost that job I spent exploring what that meant for me, I was able to understand myself better and have compassion for my struggles rather than demonize myself for losing another job in our neurotypical workforce.
I also agree that the diagnostically system is not yet best designed for our system to effectively assess the people with the range of struggles that us autistics have and other dysfunctions that exist out there. We are so complicated, us humans, and it’s counter intuitive to make the boxes smaller rather than allow for more boxes with more accurate descriptions to be available.
(wife) Thank you for this video! I can't add anything as you spoke so well! Just thank you!
Also Christine's words are so harmful towards low supports needs people who may be going through an experience with impostor syndrome, helping them to invalidate themselves. As someone who also has suffered abuse, I sometimes feel like "well, I got through that. Maybe I'm not traumatized, maybe I could handle it." But I definitely shouldn't have had to, and I'm definitely not perfectly okay from all of that. I have to remind myself constantly that just because I'm still here isn't proof that I'm all right.
Thank you for this video. We can’t allow people to divide us and we can’t allow people to spread misinformation unchallenged.
i’m a very very high functioning girl. people are totally shocked when i tell them i have autism, i go to parties often, i am in a big friend group and have been offered modelling jobs multiple times. just because others can’t see what i go through doesn’t mean it’s not real. i’m 16 now but my whole life i’ve struggled with relentless bullying and teasing, sever sensory issues, had no friends, struggled with mental health (pretty much every mental health problem you can think of) and didn’t ever go to school. people seen me as lazy and weird, but whenever i tried to express how i struggled i’d be told “she’s just a picky eater” or “she’s just shy”. my whole life i’ve felt so out of place and lonely, i went into phycosis when i was 13 due to all the stress and ended up getting sent to multiple mental health places, i skipped camhs waiting list and got told i had asd. i found this so difficult do deal with as its a lifelong diagnosis and still have trouble with acceptance now. autism looks so different in everyone, it’s so misunderstood and the jokes about it are relentless. i don’t think it’s fair how that lady can say we don’t struggle as much because i definitely do struggle as much just not in the same ways. sorry for this being so long lol
The worst thing about the DSM squishing us all together is that all autistic people have the same basic struggles, but the difference people see clearest is the gap between those without intellectual impairment, and those with intellectual impairment. THAT should put us into two separate categories. (where we were until they decided to scrap the term "Asperger's")
That's what I think needs to be changed, and I know of others who also feel that way.
Having us all under the same umbrella causes people like Christina and other closed minded individuals to compare us from superficial observation only, and come up with the notion that we have no problems, we're just being lazy, etc, when it's totally not true.
Where was she when I was getting bullied at school, when I was getting SA'd as a teen, when I was getting denied a promotion even though I was perfect for it (all related to my vulnerability as an autistic child / adult with no support) ? But she basically says people like me should just accept being called BPD and worse things because we're not really autistic. Even though we fit the criteria necessary to get the diagnosis. I can speak, but I can't find the right words to get people to take me seriously. I can't find the right words to avoid misunderstandings.
I've been wracking my brain for a week trying to think of the right words to say to a person at a program I need to call about housing. OBVIOUSLY, I have a communication deficit, and I'm not getting support with this or any of my other struggles.
I tend to agree with you. It's too exhausting having to explain the DSM-V definition of autism to other people, and I wish lower-needs autistic people weren't put in that position. After all, we have a communication disorder! Human beings are more amenable to accepting new information than revising what they already think they know. Everyone thinks they already know what autism is, and it isn't us.
First of all, I´m very sorry for what happened to you and I hope you get the help you need now. and I agree with you! We level one autistics don´t suffer less than the autistics with more support needs, but it is different. When I said I had Aspergers, people understood. Now when I say I have autism, they think I´m lying or misdiagnosed, because they can tell that I´m very differnet from someone like Abbey. Why make the terms less specific? Abbey could not have gone to a school like one I went to, even if she "had to". The headmaster or headmistress would have told her: "you can´t be here." I had to do it without support and that´s one of the reasons why I´m in a psychiatric ward right now. I don´t think I´m happier than Abbey or have less problems. but I understand why Christine wouldn´t want me in the same category as her daughter.
@@FelinaFairyphonic I'm sorry you're in a psychiatric ward. I've been in a couple myself at very difficult times. We're proof that people "with low support needs" DO STILL HAVE SUPPORT NEEDS.
It's extremely unfair that some people want to be so nasty to us. It's like they're extremely angry AT US because we can do things their loved one can't. The things they never consider are the things we can do put us under more pressure, because people expect us to be able to do things we can't, or that are extremely difficult for us, and then punish us for not being able to or having a hard time - and yeah - then they act like we're lying when we tell them we're autistic to explain why we have those problems.
Level 3 people don't get that kind of pressure, and while our accomplishments are ignored and unappreciated, they get praise for all of theirs. Not to say they have it better, because they don't, but it kind of evens out in different ways.
@@raven4090 Thank you for your kind words :). I agree with you completely! I think "low support needs" and "high support needs" can also be somewhat misleading terms. I know someone with "high support needs" and he can do things that I can´t. I need a lot of support, even though I´m "gifted" The categorization of mental disorders is a very philosophical topic in my opinion. I would never get mad at people like Abbey's mom for wanting the term Aspergers back or another way of separating us. What makes me sad is that she doesn´t take our struggles seriously. I wish you all the best and if you ever have to go back to a psychiatric ward, I hope you don´t feel ashamed. We deserve help :)
@@FelinaFairyphonic Thank you. I hope you can get the help you need and get out of there.
I also wouldn't object to having the term Asperger's back. Getting rid of it did us a huge disservice. And it's just because misinformation. He did work for the Nazis, but he saved a lot of autistic children from going to the "showers" by diagnosing them with what we have. He called them, "little professors." I wish we could be given assessment tests, and then get help according to both strengths and challenges. Many of us have talents that could be very valuable to businesses, and the world, even if we need assistance with general life requirements. Especially gifted people - their talent gets wasted, due to not being appreciated, and not getting the opportunities to let their natural skills shine.
I’m so glad you are covering this topic. Can’t wait to hear your thoughts!
Not everyone is the most vocal about their mistrust in the capabilities of an individual who retains a psychological hinderance of any kind, nonetheless it can often make someone feel far too out of place
7:16 I didn't need speech therapy, but I *did* need OT for motor issues. But the possibility that the motor issues were connected to autism was never considered.
And, in general, that's something she's missing here: for a lot of us who were diagnosed late, many individual issues related to autism were identified as things we struggled with, but nobody connected the dots.
She’s thinking in a “it would be easier to categorize” way rather than a “how will this help the most amount of people” way.
She's claiming her suggestions would "help us" in her comment section but I'm having a hard time understanding how it objectively would. Her logic has a lot of holes in it...
I end up crying almost every time I watch your videos because I feel them so deeply. Thank you. ❤
❤
I had all my elementary schools force and sneak me into the disabled area of the school (where all those teachers good people… absolutely not Holly shit no!!) but my parents refused that I wasn’t disabled just because of my intelligence and language skills when I was outside of school that was very stressful environments…. Anyways I am now diagnosed through a therapist that’s knowledgeable in ASD but she knew I didn’t have the funds for the “official diagnosis”….. when I told people, specifically a friend who’s a speech therapist they immediately denied the thought of me being diagnosed….. because I’m almost 30 and have learned some copping skills but I still feel it’s extremely obvious if u look and me when stressed….. Ive quit literally sat balled up in a blanket on the couch fully covered and had to force myself to sleep due to how loud and the camera flashing at their family party…..
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Like yes you see me now as I’m almost 30 but you never saw me as a kid or teen sinking…. And I also don’t feel like it’s my duty to share all those stories with them to prove to them especially since they are refusing a therapists diagnoses that I’ve been seeing for close to 3 years 😐
I really whish Christine sees your video and reflects her viewpoints. 🙏🏻
I am 53 years old and didn't realize I was autistic until I was 52. I have dealt with childhood trauma and have been trying to heal that the last 20 years of my life. I made a lot of progress, but I still dealt with melt downs, depression and anxiety, because I couldn't heal myself to meat societal standards. I dealt with autistic burnout, suicide ideation, disassociation, I have epilepsy, I deal with OCD, ADD Overfunctioning, PDA, hypersensitivity to sounds, and light, sensory issues, pallialia, paradoxical reactions to medication, IBS that worsens with stress, stay home all the time because of issues with socialization, my only friends are my immediate family, because I can't make friends or sustain friendships. I am Spectrum 1. If Christine wants to say all of those experiences are NOT deficits, then what the hell are they?? I stayed depressed and anxious and what got me out of it, was coming to understand last year I am autistic. Finally, I stopped trying to force myself to be something I'm not. That's where I found reprieve. And my daughter understands I'm autistic, and helps me in areas I struggle. I now know how to accommodate my needs. I now have patience with myself understanding my needs are very valid. I find it unfair she wants validation for her daughter, while if anyone is different than her daughter is NOT experiencing deficits in her opinion, she is invalidating our experiences. You can't ask for what you're not willing to give. Thank you, Irene for all that you share with your channel. You are much appreciated. You give us a voice. Truly, thank you. 💚
As a 30+ yr old black woman who only recently found out I have autism and adhd, THANK YOU! ❤
they haven't been diagnosed, but i'm fairly certain that both my immigrant parents are also autistic. my mother is obsessed with school and has 2 bachelor's degrees, a master's, and is getting her doctorate. my father was in the armed forces of several countries, and has a high-paying job. bcs they're "successful" they aren't considered as ppl that need accommodations... but we all struggle to keep things clean, take care of ourselves, eat meals. they can get sucked into a task for hours at a time and neglect their every need, they both struggle with communication and my father especially struggles with friendships. just bcs there's an area an autistic person succeeds in doesn't mean they don't struggle. it's like she thinks autism = low quality of life with no hope. that's not true, and a lot of older people and especially immigrants simply don't have the language, time, money, or luxury to try and get help. especially when the system is stacked against them.
It hurts because it feels like gaslighting.😞 If everyone has a mother like her maybe there would be more understanding since they would be advocating for all these unique individuals. It also hurts because it is almost impossible to advocate for yourself . I can't believe I'm alive and how many times I came so close. As a mother of four who have similar traits to me I could never imagine wanting to withhold others from getting help just because they are not similar enough to one of my children. Also, what about those on the spectrum who can not talk at all ? I have found that listening to such ones I can relate to them more then most people. This mother may not realize that she may be harming her daughter more than helping by being close minded and she is not empathetic it seems.
As a late-diagnosed, higher functioning autistic woman who struggles with an overbearing mother, I wish Abbey’s mother would stop speaking for her. It is so dehumanizing to feel like you have no voice. Abbey is not dumb. She is able to speak for herself but her mother holds her back and makes her feel like she can’t when she can. It’s infuriating to watch because she’s showing everybody that she doesn’t view Abbey as her own person with autonomy.
In my opinion, it seems like Abbey’s mother likes the attention she gets from Abbey more than caring about her feelings or agency. She treats her like a puppet.
Please do remember that it's not the criteria that is an issue, it is the examples presented in the text, clinical bias, and lack of education. The DSM is also not meant for your average person; it is meant for clinicians to use as a guide ❤
Irene you are so well spoken and always find the right words and arguments you have a talent, the videos you make are a gift for people with ASD that still don't or are in the process to find the words (and I dont doubt you worked a lot for this and it's still difficult). It really helps personnally to take notes and reflect on what you said and try to then express myself, especially to people that don't understand what we go through. So truly thank you for the bottom of my heart and all the way from Paris (we lack ressources in France and are soooo behind in diagnosing women !).
i was giving Christine my benefit of the doubt since i felt like she mostly fears for her daughter obviously but its very apparent that she developed her opinions strictly through what she experienced first hand and didnt really listen to other experieces that would be completely different from the autistic people she has met through the programs she mentioned. its basically the same arguement we are all used to by now where people that have experiences with the 'real' autistic people feel as if we are somehow taking the support from them. all that we do is literally begging to get a bit of acknowledgement of our difficulties and snippet of the support we were basically denied most of our lives.
I want to share a little bit of my childhood story. I had selective mutism. I did not speak at all in kindergarten and ended up having to repeat because of it. There was nothing wrong with me intellectually, but my parents were told I was not ready to move on socially. Everything made me uncomfortable and frightened about going to school. The sound of the busses, the florescent lighting, the smell of the soap in the bathroom. I distinctly remember going to school every day feeling like I was going to have diarrhea and/or vomit. I never ate breakfast and still don't for this reason. I was also the type of ***undiagnosed*** autistic kid who was afraid and deeply embarrassed by of ANY kind of attention. People's reactions to other people and situations I had observed always confused me so I never wanted to act up/ask for help because I didn't know what would be done to me if I did. I lived in a state of terror feeling like I needed to escape but also trying to suppress it all down so I wouldn't get noticed. Looking back on it, and after observing other autistics nowadays I wish I would have felt comfortable enough at any point in my childhood to show my emotions or have my behaviors reflect to anyone my state of being so that I could have gotten the support I needed. I was not ok. However, my parents always had other bigger problems and I always felt that burden as well. It is possible to suffer silently. Fast forward to today whenever I would volunteer at my kids school and use the bathroom the smell of the soap immediately transports me back and I get a little ZAP of panic for a second. Funny that 35+ years later schools are still using the same type of soap. I also never understood as a kid and even now as an adult why I could never say what I wanted to say in the moment. I go blank. But when I'm writing it flows out of me so naturally. Still have the selective mutism just never had the luxury of a diagnosis.
Irene, I love the way your mind works and how honest and GENEROUS you are to people you disagree with. It uplifts my heart to see that I’m not the only one who understands that a disagreement is only one aspect of any relationship (even between strangers) and that we can be respectful and get much farther when we exercise our RIGHT to specifically assume the very best intentions from those we don’t agree with publicly (I acknowledge it’s not always safe to assume the best intentions from people in private spaces). I see you generously extending the opportunity to pull this conversation up towards tangible solutions - you don’t resort to simply scoffing at her or appeal to those who dismiss her as an evil person. But as solution oriented as you are, you are equally generous in showing your integrity to logic and truth when offering your thoughtful feedback. You don’t allow her to manipulate the conversation towards solutions that ask you to dismiss contradictions or skirt important things that they try to frame as nothing more than semantics. So instead of simply dismissing her as stupid, you shed a bright light on exactly what you’re being asked to look away from and ask why. NOT accusationally, you are just exercising your right to expect her to make sense of her good intentions if she wants to be taken seriously. So you simply and concisely demand a satisfactory response that is precise and no longer dismissive or contradictory - knowing that she must eventually do so if pressed because she claims to have good intentions. Because you know that YOU actually do have good intentions, and you are open to changing the way you think about things if you are given good reason to. And therefore you have no problem expecting the same from others - which takes a lot of patience but don’t give up. Keep pushing the conversation back to whatever others try to gloss over and make them sort out their contradictions until you get THEM to their own truth and one of three things happens: they are either forced to change their stance in order to make sense, OR you gain clarity about whatever fundamental belief you happen to disagree on about reality itself that you had both assumed was common knowledge, OR they cause you to realize you were wrong. Even though most Neurotypicals don’t seem to appreciate communicating this way - they would rather deflect by scoffing at each other and are satisfied to blow each other off with the most sarcastic accusations - never let that stop you from holding anyone’s feet to the fire to get a satisfactory answer from them about the things that matter to you.
Your integrity to the truth makes me imagine that if I knew you in person, you would be so fun to talk to about anything, but it would be particularly enriching to engage in controversial topics because I bet if we “disagreed”, we’d be able to figure out why, from an open and transparent approach. I have a friend like that who is also neurodivergent and she is one of the only people I feel like I can be myself with. Unfortunately we live far apart now, but whenever we got together we always had so much fun talking all night and found that we had many opposing views of controversial things that we were both quite passionate about. And yet we could discuss them freely and deeply to uncover fundamental truths without concern for anything but the truth as we retained the assumption that we were both good people. In doing so, we were actually able to change a lot of our personal opinions, or at least discover the core beliefs that reflected how we both had really good intentions. But most importantly, we were able to access a broader awareness of the positive motivations that inspire good people to choose perspectives that are difficult for other good people to understand.
Much appreciation for your expression, Irene. Always. 🌻The difference between ‘knowing’ and ‘showing’ has been like feeling The Eye of Sauron on me my entire life with very few witnesses to tell about it. Caregivers who tried to force a Eurocentric identity on to me without consent my entire life have treated me as less than a person at almost every turn. My elders from the Black community always treated me like I am a tailor made person and it’s made a profound difference in my mental health and my own growth and development as a person who’s ‘different.’
Just as emotionally unaware people will put others in positions to do more emotional labour to cover for their blind spots, others are often in a position with Eurocentric American minded people to work gruelingly harder simply because of the Eurocentric American frame of reference to broader conversations. I have had to ask explicitly as people if they are speaking from a Eurocentric American point of reference just to bring some consensual awareness to the dialogue they’re having with me, who is from Ireland/English ancestry… but is not listened to as someone with a voice regardless of how they measure prestige or dominance from a European American descendant framework. I am a person, not their limited ability to perceive me.
In my experience, the person who complains that someone is taking oxygen from them, when there’s plenty for everyone, is often the person who’s trying to be compensated for their hard work at the expense of everyone else’s hard work.
“Learning without wisdom is a load of books on a donkey.” -Zora Neale Hurston
I was diagnosed at 20 years old it's been a year and I'm 21 now. My nerologist
stated that my school failed me. I had struggled badly with school focusing and socializing. In freshman year I had struggled with suicide ideation because the sad thing that I felt and I thing many autistic people have felt is recognizing this world is not ment for me. The reason why my mom couldn't help dignose me was because of class (money) my mom and dad got a divorce and she was my primary caregiver and she struggled with money and too busy working to notice some traits in me and my father although he had insurance for me refused to take me when I needed a doctor. My father didn't believe in mental health issues and was very stubborn. (He too I believe has undiagnosed AUDHD so it was a hard pill to swallow for him) I can't verbalize or recognize my struggles but I do recognize the pain I have and I know its valid. I think if I never got dignosed I'm not sure where I'd be or if I'd be alive. so many people with Asd become homeless, addicts, abused/scammed,commit suicide and struggle and I think I'd be a part of those statistics if I'd never got dignosed and if no tried to understand me. Due to my horrid meltdown make me feel like dying I'm not sure I'd be able to take it. I know others have expirence similar to me which is why her perspective makes me deeply upset. Although in a way I understand she probably feels like feels like Abby is invalidate and probably feels that for her. She probably also feels invalidate as her mother that mothers don't feel and expirence the same as she does. I understand that because I've experienced jealousy towards other autistic people for being able to mask well or for being able to do things I cant can't do. although it's valid for me to feel that way I Shouldn't put others down for it and act on that feeling or it would be wrong. And seeing Christine makes act on those feeling with lack of education on what she's saying and also seeing the privilege she has by saying it make me so upset and understand even more how dangerous it is to act on my feelings. I'm sure if she sees me me parts in my life that no one has seen shed recognize me as autistic or if she sees me when the mask is slipping off shed see me as autistic but if she where to see me pay a cash register or breefly speak to front office at the doctor's or see me greet someone at church she would say my only struggle is eyecontact and probably invalidate me. I hope she understands that she can't see into peoples lives just like people can't see into hers that her feelings are validating but the way she's expressing them is wrong and so many people can look at Abby and say the same about her I seen a video Abby made an appointment to get her brows done and was able to let people touch her and get her brows waxed I could never do that by myself and waxing would put me into a meltdown I know because it's happened to me before when I tried to wax myself and I can't let people touch me for too long or I'll start to cry and have also a bad meltdown/shutdown. I also seen Abby on jublee where she talked with a group of people and I cant speak at all when there is a group more then three. Dispite that I recognize 100% Abby has Autism and so do I. Different autistic expirence can co exist and be validatted without putting one or the other down. Different needs should always be validated and attempted to be understood.
When you said “just because you had to doesn’t mean you could” I burst into tears. Thank you. Thank you. That is honestly so validating and what I needed to hear. Christine’s viewpoint made me very defensive and invalidated about my own experience and that just brought me back.
As a fellow Level 1 autistic who wasn't diagnosed until I was almost 34 years old, I felt like I walked through life with so much confusion and difficulty until I was practically 30 and started exploring the diagnostic process. I grew up in the 90s and my parents were huge "bootstrappers" so they never deigned to apply any label towards me. Because god forbid I was anything other than normal, right? 😑 (They got way better with time, but still.)
As another commenter essentially wrote below, "Yes, I got through school, but at what cost?"
And I’m sure life was very hard. It doesn’t mean that since you are Level 1 autistic you didn’t have serious struggles. Thank you for sharing, I hope you’re able to go through life a little better today ❤
Thank you so much!! @@clivematthews95
Thank you, as always, for validating those of us that went unnoticed. I’ve been deeply grieving the life that could have been for me if I had the resources while trying to focus on how far I’ve come on my own, so Christine’s content definitely struck a nerve.
Saying "if you're functional, then you don't have a disorder, you're just different" invalidates all of the pain autistics endure in order to conform. Pain which many people have no idea about because, of course, we have been forced to internalize it. It's like Schrodingers autism from a neurotypical perspective- "if I can't see your pain or struggle, is it even real? Or significant?"
Well my answer would be, it depends on your level of empathy. Why would you want anyone to just exist at the extreme end of their pain tolerance for their entire life? Especially, and most importantly considering how more tolerance is actually built by lowering the base level of pain. It is NOT built by desensitizing ourselves to it.
All the adult autistics speaking up can make a difference for the young ones who are being misunderstood as young ones!❤❤
This was very well thought out and articulated on your end. I follow Christine and she just comes across as SO privileged in all of her takes. That's all I have to say about that... like her opinions are all so clearly rooted in her own privilege as a well-off white woman who is very much "outside looking in" when it comes to autism. I empathize with her frustrations as a caregiver, but that's what she is. A caregiver. Not an autism expert, and certainly not an authority on the matter.
also i feel like the biggest difference she is talking about is the ability to mask.... masking doesn't make someone less disabled - it makes them disabled in a different way. the stress of masking is correlated with way higher risk for stress-induced health disparities (like mental health tolls/autoimmune disorders/heart disease/cancer). level 1s are going to be more likely to develop autoimmune disorders than level 3s, so masking is not a skill - its a bargain with society that we have the ability to proceed with. we trade our health for some acceptance... idk if having that ability is inherently less disabling in this world. yes level 1s, 2s, and 3s have DIFFERENT needs, but as you said, level 1 needs get ignored easier by neurotypicals. we can't talk about the disabling nature of autism without discussing comorbidities!
Your expression at 15:49 is ME FRFR as someone who is seeking diagnosis, I struggled for years with sensory issues, meltdowns, and never got help in school. I struggled so much and had to cope and mask 24/7, whilst dealing with severe chronic pain. My family and I didn’t have the resources until now to seek diagnosis or therapy. If you have gone through something similar your autism and neurodivergence is valid ❤❤❤❤ with or without accommodations. I’m so happy to know there are creators online like her that speak on these issues and with people spreading missinformstion❤
'I feel thin, sort of stretched, like butter scraped over too much bread.'
i've related to this quote since i first heard it in the fellowship of the ring movie, when i was twelve or so. weird thing for a child to relate to, but i was probably just feeling like that because of autistic burnout
Thank you!!
I can't express how much I appreciate this.
The >picking things apart to find the lie< is just so disturbing to me. The amount of time and efforts people spend to make the lives of others worse is just...just doesn't add up for me.
I'll keep living with everything I've been diagnosed with no matter what anyone else says.
It’s pretty basic: “my daughter had 20 years of speech therapy…it’s a different thing!”
Yeah Christine, it’s called a different LEVEL.
It’s like she’s arguing for something that’s already in place.
i still don't have the diagnosis, but i accepted i was autistic after my kid was diagnosed, in my 30's. i got some support in school because i'm dyspraxic and the school knew i was adhd as well even though that also was undiagnosed for awhile. to avoid bullying from other students and family i refused to use any supports by my teen years. I've been through eating disorders, self harm, s attempts and thoughts, addiction, more inpatient places than i can count. I'm glad we're recognizing more people now. i'm glad we're getting more accepting and my kid doesn't have to go through what i did
Yes! It's so fucking gobsmacking how much hate people get for pointing out real problems we have or have gone through. I want kids to never go through what I did...why gatekeep this...
Wonderful video. I admire your graciousness towards Christine. And I admire your clear, thorough and deep analysis of this ever evolving arena. I do agree with everything you have said, and I also truly empathize with where she is coming from as I am a full time single parent caregiver to my level 3 autistic 25 year old son who also has Down Syndrome. I can feel how easy it is to see level 1 as not really being a thing. After all, so many people I know, including myself, might now be identified as a level 1 but having had to go through life just thinking we were different in a very hard way, with no support towards what we needed to develop in a healthy and graceful way. And as a 69 year old tired woman caring for essentially a toddler in a man's body, I get where her perspective comes from. And yet, my reaction to this video of hers was more judgy than yours in that I got frustrated with her lack of empathy towards other people's experiences and I totally agree that if support is needed, it is a deficit, not a difference. I've been devouring your videos since I stumbled on you with your infj/autism video.
I'm level 1 and I struggled at school and jobs - not because of the learning (it's one of my hyperinterests and it's very annoying to people around me :\ but bullying and being taken advantage of). And it is heartbreaking thinking that one way or another we all suffered and many developped more disorders due to the lack of support vs our struggles.
I can’t imagine that any autistic person would care what “Abby’s mom” thinks, about anything. I don’t. My cousin’s child, was a nonverbal, nonfunctional, level 3 autistic. I, a level 1, can function moderately (poorly) well, keep a job, support an entire family, but…my mind goes completely blank in situations where I’m speaking in front of others. The verbal function isn’t there. We are both autistic, with many comorbidities. Regarding our autistic brains, it’s a lottery, where everyone loses. Doctors can see the white matter anomalies. I had all of the signs, yet I was missed. There are others, in my immediate family with the same tale, because we share common ancestors. When I was a child (80’s-90’s), you did NOT want to be labeled “autistic”. Today, I embrace it, and life makes sense. Regarding the parents of autistic persons…they need love, and support, as well, even when they share their boneheaded opinions. 🙂 Keep up the good work.
Ngl that line about how a level 1 black autistic woman’s struggles might surpass Abbie’s made me tear up. Thank you for explaining things so well.
Preach. When you were talking about work and being disabled. It hit me hard. Thank you for being such a great resource and support. Your videos are what I need.
It really feels like what Christine is saying is just that Level 1 Autistics don’t have it “bad enough” to be considered actually autistic, which has frightening similarities to how I used to talk to myself about my ED and other mental health issues.
You can’t have an eating disorder, because you do eat. Because you aren’t x kg underweight. Because you haven’t been hospitalised.
You can’t have depression, because you did smile that one time last week. Because you don’t cut deep enough. Because you haven’t tried to unalive yourself.
You can’t have anxiety, because you do talk to people sometimes. Because you don’t have panic attacks _every_ day.
The list goes on.
This kind of thinking isn’t helpful. All it does is make people doubt themselves and their experiences for longer, delaying them asking for support, thereby giving their issues more time to progress. So when they actually do seek help, it’s just an even longer and more painful process.
Thanks for speaking on this! I 100% agree with you. I relate so much, i was diagnosed at age 30 and I struggled so much in childhood all the way up to my diagnosis. I would've been considered higher support needs as a child but I was forced into a world that didn't accommodate or offer support to me. When I got diagnosed at age 30, they diagnosed with me as level 2 autism.
I agree 100%! What about those of us who are gifted in the speech department?
I am low support autistic (and ADHD), with a high IQ and speech and music gifting. I speak 6 languages and have perfect pitch - which means I am REALLY good at imitating. I was diagnosed in my 40s.
I absolutely struggle with speech when I‘m uncomfortable, stressed or afraid, in the way that my frontal lobe shuts down (ergo nothing grown up and intelligent can make its way to my mouth) and I can only speak from my limbic brain. What I mean is that I will fawn or attack through speech, until I get away from the stressful situation. I ALWAYS regret what I say in these cases and I can‘t stop it - it‘s an involuntary stress/danger response.
I used to call this „turning dumb“ before I got my diagnosis. Now I know that it‘s actually a form or selective mutism, applied to a person with speech gifting.
9:48 Maybe I shouldn’t be watching this because I’m currently going through an identity crisis and finally trying to seek actual support for my autism diagnosis that I got six years ago, and this is kind of triggering, but wow… I agree with you fully. This kind of gatekeeping doesn’t make any sense.
I wasn’t pulled out of “normal” school until I was 15, and the place I was put and stayed for a year couldn’t accommodate me. I was privileged enough to be sent somewhere I could finally breathe when I was 16, but all those years leading up to that point? In that time, I developed comorbid mental illnesses that have stayed with me ever since. When I was diagnosed with autism (which was actually Asperger’s Syndrome, something Christine would probable just call “neuro-different”), I had an ED and was severely underweight. I was literally dying. And most people would have looked at me and thought I was just a regular able-bodied girl, but that doesn’t change what was going on inside me. It’s so incredibly hurtful to invalidate people like me and others simply because we didn’t get speech therapy or whatever (and yes, I also struggle with speech and non-verbal episodes and selective mutism despite the fact that I CAN talk).
I’m 20 now, and I can’t work. I’m trying to get better, but I don’t need people like this telling me my problems aren’t “real” or “not that bad.” I already tell myself that enough. I literally think I might not have been alive today if I weren’t lucky enough to have my family and have access to at least some support. This is what invisible disability means; you can’t just look at someone and assume that because they look “normal” they haven’t had/still have profound struggles. Ugh. 🙄
it's interesting that christine brings up OT and speech therapy, which are two things that I did have as a child but wasn't diagnosed with ASD until adulthood bc I pursued getting a diagnosis. It's funny how even tho I did go through similar experiences as Abbey, her mom would still argue that I don't have ASD bc my symptoms/signs weren't as severe as Abbey's
My feeling when I hear arguments like Christine's is that her argument is rooted in ableism. She feels as though late diagnosed autistic people shouldn't have the same diagnosis as her daughter because they aren't as disabled as her daughter. But autism is a spectrum disorder, it effects us all in different ways. I have never been able to work, I have been on disability for most of my adult life. Doctors have been confused by what is "wrong" with me for years. Being late diagnosed does not make me any less autistic or less disabled. I just didn't have the supports available to me to understand why I am disabled. Using the language "difference" instead of "deficit" is something the autistic community likes to do to remove ableism and encourage the idea that there isn't anything wrong with us for being autistic or disabled. When Christine insists that her daughter isn't different, that she has deficits, it pushes the narrative that autistic people are broken neurotypicals.
Thank you for talking about this, I hope your videos reaches Christine!