Unedited, No Makeup: Do I Have to Set Myself on Fire to Be Heard?
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- เผยแพร่เมื่อ 6 ต.ค. 2024
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#latediagnosedautistic #momonthespectrum #autisticadult
For us who need less support, often the only support we even get is peer support and videos like yours. Many of us aren't even diagnosed without us recognising ourselves in the videos first.
⬆️ this. ❤
When i was diagnosed i didnt react. The doctor was like what are you feeling? My reaction: are you sure? I was so gaslit my entire life it took me awhile to realize i was acknowledged.
I am only pursuing a diagnosis now, at 44 years old, for AuDHD because of TH-cam Shorts videos. I started getting ADHD experience videos that I found interesting, but only slightly resonated with me, then came the adults with autism videos that resonated strongly. Eventually I found some people with AuDHD making content and it was like seeing my entire life explained to me.
Videos like this I've have literally made me feel heard and understood for the first time in my life. I have some answers to the "why am I so..." questions.
I'm only seeking a diagnosis because I have a high need for information and confirmation, I am very low support needs, I'd love assistance, but I'm mostly capable of taking care of myself. If I can have a diagnosis confirmed it will help me explain myself to others in a more concrete way, or so I hope anyway.
@@PeculiarGirlKelly I'm a year older. I have some professionals thinking I should absolutely get diagnosed, but those that could refer me to the process are gaslighting. Or then just simply saying "you may be, but you don't need the formal diagnosis for anything, we're saving resources". (Despite that making me vulnerable to gaslighting by other professionals.)
So, self-diagnosis and self-help it is.
@@MiljaHahto That is so frustrating, and a story I've heard from many people, so far the people I've worked with have been seemingly open. It probably helps that I'm allowed to self refer through my company's EAP plan.
I have largely avoided therapy, as for me it's not been super helpful and often is actually damaging to my mental state.
Can you choose your doctor where you are? If so maybe it's time to try someone new.
I saw a really good analogy on TikTok today:
Everyone is a little bit autistic just like everyone is a little bit pregnant. You can have morning sickness and not be pregnant just like you can have anxiety and not be autistic. So unless you want people to start saying you’re a little bit pregnant when you’re ill, then stop saying everyone is a little autistic.
And I LOVED it 💯
Sending you all of the love and good vibes, Taylor 🫶🏼
I think of it like traits vs clinical diagnosis. With it being a spectrum, what exactly is the tipping point that justifies a diagnosis?
A diagnosis is made to identify an illness or injury, but this spectrum does enter into some debate over whether benign personality traits should be included as an illness worth diagnosing in order to get some kind of treatment. Some aspects of autism can require something to relieve the person, such as help with sensory issues for example. There should be more discussion about who exactly needs modifications when a society can't cope with benign personality traits of someone not coping with what can often be described as a toxic environment, situation, or societal norms.
Everyone might have a trait in common here or there, so what is the goal in diagnostics? It has to do with who simply isn't coping well.
Societal norms do include the "song and dance" facade mentality. What they're basically saying is that pretentiousness has been accepted as a standard, but not even nt people are actually coping or happy with it either, so that's a lie. They just don't know how else to be or get by in a society that requires a certain level of pretentiousness to make a living, or survive. For millennia people have had to navigate a social environment that includes predators for instance.
Something I've noticed is how vulnerable autistic people would be to someone with a predator lean that lacks empathy, and how difficult it is to recognise them. Predatory people are very good at using the systemic pretentiousness to go incognito and manipulate others into believing they are the problem instead to cast off doubts about their own character. Autistic people are often very good at turning inward into their inner world, and are very prone to internalizing any toxicity around them. What I often don't see autistic people very good at is knowing what to do with it before it's there, let alone after it gets internalized.
Sometimes the problem isn't actually you. Sometimes benign personality traits becoming diagnostic criteria has put the attention in the wrong place, because they aren't the problem. When difficulty coping is in some way censored, it can lead to wondering what we've done wrong, but we haven't done anything wrong, and the call for attention could inadvertently bring attention where someone doesn't want it, so we experience censorship and it doesn't make sense to us why. I say "us" but I can't be sure it's only autistic people, so I mean anyone could wonder why. Anyone could be gaslit for example, and how would they know the reason why things are like that?
While I feel strongly this needs to be a conversation (no doubt had with some soothing cuppas or something), the priority and goal in my perspective is that people can be safer. Unmasking where a problem might actually be can be very dangerous in some situations, so while it's good to be heard and get to problem-solving as a simple and straightforward task, there's a need to be careful too, and just do the best one can to get to the other side of a difficult moment.
Ideally a person wouldn't need a diagnosis or label to simply be treated with dignity and respect as a human being in a diverse society. Too many people would fall through the cracks of not getting approval by having a medical note. For anyone undiagnosed, they also deserve to be treated humanely with their uniqueness in mind. We just don't know others like we can know ourselves.
Maybe there really are many on the spectrum without a diagnosis, and so have to assume they're "neurotypical". If you see someone who comes across as nt, they might even be masking. How do you know every time? And do people with a diagnosis owe everyone else an explanation of why they're unique? Are they obliged to have a sticker on them saying they're autistic? I would hope not. If someone is willing to share, it's great as a choice. It tends to mean that's when they really need to be heard.
Instead of telling someone to stop saying something, maybe in some way they need to be heard too, and maybe it doesn't actually invalidate anyone in the process.
YES! I am an NT man with an autistic wife and son, I feel I am constantly correcting people on that perspective. The pregnancy analogy is perfect!
That is GREAT...Thank you for sharing!
This meant so much to me, ❤ This struggle to be heard is real. It makes self advocacy so fn hard 😢
My go-to analogy of saying "everyone is a little autistic" to an autistic person is a lot like an average NT choosing to compete in a professional Field & Track competition, losing in every single event, and then proceeding to go to a paraplegic individual and saying "I totally know how you feel being handicapped."
I used to believe my voice wasn't heard by many people but as I've gotten older I've realized that sometimes, the "right" people or the people who really matter to me and what I'm saying actually hear me. I think those that don't hear me will never truly understand me or care about what I'm saying. My world gets smaller every time I encounter those situations but it's comforting in that my words are being heard by people who care about me.
This is a really comforting perspective. I can see how this could be true for me as well!
I think adults were supposed to be able to pay attention to anything without the need for histrionics, I think once again the normies have part of the blame on this.
Yes, it’s been absolutely unbelievable how misdirected, misguided, misunderstood.
These incredible videos are truly helping me understand and help the real me. Thank you so much. ☀️
As a neurodivergent mom of 3 autistic kids, I wonder if sometimes the person who hears you and gets credit for the thought is actually just translating your words for the group, whether they realize it or not. I've been told we say things differently from other people, and I feel like I've been "translating" my kids for teachers and relatives for their entire lives
Relate to the smaller support group as you reach out to the existing group... Sucks.
The real autistic community knows how we all struggle. We know we all struggle in different ways. Anyone that has an issue with our spectrum doesnt understand us yet.
The lack of being heard is such a trigger for me. My narc traits come out when I feel overlooked.
I have a stronger sense of justice and ethics than most around me. The narc says, this is illegal or wrong to the rules, but others see it as excuse or threat and distance from me.
But many employers don't want whistleblowing, they prefer boeing response. Twice. So I get fired not supported
Narcs are whistleblowers.
@@Sherlock423 Amen to that. injustice/cruelty boils my blood to an extreme degree.
It can trigger me when people misinterpret my motivations especially when I am trying so hard to be helpful. Sir Anthony Hopkins quote is almost a daily mantra, "It's none of my business what people say of me, and think of me. I am what I am, I do what I do. I expect nothing, and accept everything. And it makes life so much easier."
Wish you and your daughter peace in finding a solution for school.
That's a great quote. Thanks for sharing and also for your kind sentiments.
@@MomontheSpectrum Your videos have been immensely useful to me in giving space and quiet understanding to the ASD people that I know. Anthony Hopkin's statement comes right out of Alcoholics Anonymous, where dual/compound diagnoses are rife among us, with health complications related to stress. I have passed links to your channel
The more I'm able to "expect nothing, and accept everything" the more I'm free to live in the present moment. It's life changing. Thanks for this quote! 💖
THIS 100%
He was RICH. He didn't have to kow-tow to bosses, judgement and derision. The rest of us have to care what others think - our bosses, co-workers, church comrades, club members and in any social context. I am autistic and I have spent my life masking and dumbing myself down just to get by. NO boss wants an employee to be smarter or more creative than he is. NO group wants an ODDBALL who is in anyway different. The motto of the proletariat is "Fit In Or F*ck Off."
I’ve had people walk away from me mid sentence when I was talking. It’s humiliating. And you don’t have to constantly qualify or edit yourself. We know that you aren’t speaking for everyone. But I also know that We’re all so afraid of stepping in the verbal minefields that we tiptoe through the English language to avoid attacks. I understood you perfectly.
Same here, and it’s my husband who does it. He also likes to yell when he’s mad, even though he knows what that does to me.
Love this comment.
And yes same here.
Same here. Humiliating is a good way to describe it. 😒
I understood you very well, also. There is nothing wrong with getting advice or help with a situation when you need it.
I once has a situation where I was standing talking to someone - and another person came and stood BETWEEN us with their back to me, right in front of me, and started talking to the person instead!! What is that?! 😟
And the person I was originally talking to did nothing about it, they just accepted the new conversation and ignored me, too. 😕
Why do people think it's okay to be abominably rude to us? WHY??? 😢
Expressing oneself with a simple, clear, concise sentence and not being heard is so frustrating.
We have been speaking since 70,000 years. We have been writing for a few thousands of years. We have literature, philosophy, history, science. We have killed each other over written words.
You'd assume words have power.
So why is it, that the sentence: "Please help me, I've got a serious problem", can only be understood if while saying it you also cry, make faces, beat your chest, jump up and down, pull your hair and scream and shout?
If words mean so little, why haven't we stayed on the trees?
Thank you for wording this feeling of dispare so apt. It made me feel heard, and I didn't even speak. I hear you, I see you. Your words have reached me.
This was me 25 years ago with my family, and even when I did cry, scream and pull my hair out then they thought I was being manipulative.
@@lucinevertanes9564Indeed. My experience is that when we speak calmly, logically, clearly about difficulties they're either dismissed as minor or our requests for support are ignored or denied because we look as if we're 'coping well'.
However, if we break down and either become loud and angry or weep and wail in distress and despair, we're accused of being aggressive, hysterical, overly dramatic, irrational, and so on. In such cases we're either denied support altogether due to 'antisocial behaviour' or told to go away and calm down and come back when we can be calm and rational - *sigh*.
@lucinevertanes9564 exactly my thought...when we DO react strongly, someone assumes we are being problematic, not that we have a problem and need help. Catch 22.
Straightforward sentences that don't make sense to native English speakers is so frustrating to me too.
Noun verb adverb, what do you not get?
I'm also considered "high functioning" and I hate it because people don't understand how much I struggle every single day. My whole life I've felt like a ghost because it seems like no one really listens to me, until, unfortunately, I'm brought to the point where I'm having a meltdown. It's exhausting.
Yes. This. I have TBI as well from a massive surgery and I always say just because I don’t have crutches doesn’t mean I’m not broken. But people won’t ever be able to comprehend that.
"My whole life I've felt like a ghost" This. It's terrible, but nobody and care.
I often feel out of place in the autism community. I wear two hats. I'm a late diagnosed autistic woman and I'm a parent to an autistic child with high support needs, who is also nonspeaking. I think the autism community is fractured, and that's very unfortunate. I think when people say that lower support needs people are talking over those with higher support needs people, it comes from a place of frustration and pain. I can say that I do not receive enough support to take care of a child with a disability. We don't get enough financial help, respite, and emotional support for what we are expected to deal with on a day to day basis. We are tapped out and tired, expected to do it again the next day. I think parents like me see other lower support needs autistics online and may even be jealous because our kids aren't able to do that yet or maybe ever. I think there's fear involved, too. Fear that those being listened to will be those with spoken language and the nonspeakers will be neglected and they rely on others when we are no longer here. I think all you can do is listen and support those with different support levels because we can all learn from another. Even though I feel out of place in some groups within the autism community, I've never felt that way here. Thanks for being vulnerable! 💞
As I'm reading your comment, I'm connecting how this really relates to how I feel with the school situation - I feel like I have to communicate the loudest to be heard. And maybe with higher support needs it can feel overwhelming bc the communication abilities are very different... and it is probably very frustrating to feel like maybe sometimes your voice is drowned out or trampled on by others who seem to be able to "speak up"... I hope this isn't putting words in your mouth. Just starting to see that maybe we are both feeling similar in different ways. 🫶 Thank you for sharing your perspective. I can hear that you're feeling less than supported and exhausted. That is an overwhelming feeling.
Such insight and thoughtfulness and grace in this reflection. Thanks Whitney.
Taylor, idea for exploration. Is there space on your channel to interview Whitney about their experience and their kid's experience to provide more insight and visibility into higher support need experience. Also, don't stop what you're doing - it's so great!
I have a high support needs disabled child as well, and though I believe he shows many autistic traits, he will never be diagnosed. He has a tbi diagnosis, so doctors will not diagnose him with anything else neurodevelopmental or the like as they have no way to know which came first. I, however, have been recommended for testing and go later this year. After what I have learned about autism, I now understand everything about myself and my life in a way I never was able to before.
That said, I was a low support needs adult raising a disabled child by myself as a single mom. I understand exactly what you are talking about! It is like pulling teeth to get any help in certain areas of the country I live in. What did I do? I moved us to a state that would help me and my son. Now that he has the support he needs, we can both start to heal and breathe. I love my son more than anything, but I want to be able to be around for as long as I can, which means finally taking care of my needs as well.
If you don't have the help you need, I promise help is out there. It might just not be where you are looking for it. And it might take looking in or moving to a different place to find that help. You are not alone. Don't forget to take care of you 🫶
@tarawatterson4188 you're welcome and thank you! 😊
When I get the comment, "everybody's a little autistic" or "we're all on the spectrum somehow, " ... I will stop that line and say that actually if they look at your brain and my autistic brain, they can see and point out the biological differences.
It felt good to say it and I look forward to saying it again when someone says it to me again.
I’m taking that - thanks!
Good idea!
I'm OK with "we're all on the spectrum" As long as people realise a spectrum has ends - and starts at zero or "not". Most people are on the "NOT AUTISTIC AT ALL" end of the spectrum.
Another thing about the spectrum is - most people who say “we’re all on the spectrum somehow” tend to view “the spectrum” as a one-dimensional line with “not autistic” on one end and “extremely autistic” on the other end. That’s not a spectrum. That’s a line.
“The spectrum” is more like two things people will relate to better - rainbows, for most people, and for more techie or musical types, a graphic equalizer. “The spectrum” is composed of many different individual one-dimensional lines all combined together. Being “a little autistic” or “on the spectrum somehow” means that you show up on a couple of those dimensions - usually a little bit. Being autistic means showing up significantly on many or most of all of those one-dimensional lines or bands all at the same time, all the time, every second of every day, more or less since we were born, and with no real deviation from that state from that point until we die. Autistic people don’t get a vacation from our being on the spectrum and showing up significantly on most of those lines all at once. It isn’t something that “shows up once in a while” when we’re having a bad day or whatever. It’s something we’re dealing with 100% of our lives, constantly, unrelentingly. For us, a good day just means those things aren’t interfering as much as they usually do, but we’re still having to deal with them and compensate for them even on our best days. It’s still taking its toll and wearing us out, it’s not as if it isn’t there or we don’t even notice it.
Anyway, that’s probably enough to explain another point of view for what being “on the spectrum” really looks like vs. how neurotypical people tend to view being “on the spectrum”.
I told someone that about Autism and ADHD. She said that thats just normal, I do that. I said "actually they have proven that autistic and adhd brains are physically very different"
She replied "I don't belive in Conventional medicine so cannot believe the bullshit they make up"
I'm 74..... just diagnosed 2yrs ago. I love your videos. So much of what you've gone through has helped me make sense of my life. I've gone through my whole life feeling not heard, misunderstood, and like everyone else has figured everything out, so why can't I?
Your videos help me so much more than I could ever say. Thanks for doing this. ❤
wow! i just got diagnosed a couple of months ago at the age of 50, and i thought that was hard... i'm sending you a BIIIIG...whatever it is you find most comforting (i was gonna say "hug" but some autistic people really hate that, so i let you choose). ❤
I can’t count the times I’ve said something or had an idea I put out there then it’s rejected or ignored and literally a few minutes later someone else will say the same thing and the group goes wild. I’m I’m just there. I’ve called it the middle child syndrome. Invisible.
This. Indeed.
Yes, all the time. Especially at work.
I feel like Cassandra every time I say or suggest something that is ignored or dismissed but ends up being the solution or the way things turn out.
All the time.
All the time but WHY
I'm a 44 years old, late diagnosed with ASD-Level 1and father of two, my son is autistic, too. I love your content and your channel and the "unedited" version of you is even better. Greetings from Germany.
Very similar situation to yours, diagnosed at 45 out of the blue, two beautiful kids, I don't know if they are ASD, maybe the elder but "high functioning". For my all life I felt "strange", often wrong, clearly a small minority.
Greetings from Italy.
I feel in Europa we are very late compared to US, Canada or Australia in talking and accepting a less pathological vision of ASD.
Hi! I'm considering moving to Germany. What is the situation with mental health providers? Is it possible to access evaluation (for at least Adhd) for English speakers? Maybe in private clinics? I would appreciate any input.
I'm an American living in Australia the past 20 years; just diagnosed with ADHD-inattentive and ASD-Level 1 last year at 41. My mother completely rejected the news of my diagnosis, largely because she doesn't care to learn new information, and she thought I was perfect, she still argues with me about it if I mention it, so even more masking now required to be in touch with her. 🙄🙄🙄 What's the actual point of anything? I forget regularly.
@@Fabio_GarzenaI'm 45 and I'm pretty sure I'm autistic.I live in Switzerland,think the same way you too,we are very behind
Your representation matters. For a long time the only representation we've had are people with higher support needs. That leads to many people not understanding that they are autistic, not getting diagnosed and dealing with internalized ableism.
People need examples of all kinds of autism so they can have a rounder idea of what it means to be autistic. You are helping people (like me) figure out that they are autistic.
I feel your pain in trying to communicate because I deal with it too. I just went to an IEP meeting and I was told to email the principal to advocate for full support for my child. I don't know how to write that email.
❤
This is just a small piece in a big, difficult puzzle, but it helped me recently so I'll pass it on. Chatgpt (free AI website) answers questions very clearly. If I'm not sure how to do something (especially if I can't phrase my confusion in a "google-friendly" format), I just type the word salad into chatgpt and it usually gives a pretty good answer. I recently needed to email an academic asking a question and I was unsure how to greet him, what elements to include and leave out of the email, how to approach a question that could imply that he's wrong, etc. I outlined my intention and my question then asked "how do I write an email about this to the author of the article?" and it spat out a generic template. I still change the wording and add my own sections, but it gives me a rough idea of what people are expecting. I also find it helpful for really broad/vague/niche questions like "how do I figure out what community organizing is occuring in a specific zip code". It's not 100% perfect but it usually acts like a person who's involved in the area you have a question about, which can be really helpful.
You’re awesome. I appreciate this raw, unfiltered version of you. Thanks for being real.
She cute.
This is so relatable. I feel like when something is emotionally charged I get quieter and more even toned at first in an attempt to not be overly emotional because then people will see me as being dramatic and I won't be taken seriously. But because I sound more calm no one really listens, so I end up asking for support over and over until I'm at the breaking point and then I have a meltdown and everyone listens, but the whole point is that I was trying to avoid the meltdown by asking for support before it happened but no one takes me seriously until it's too late.😔
Whenever I have a migraine everyone will walk on eggshells around me and suddenly be careful about loud noises and triggers.
I think it clicked with some people in my family that the way they are so kind and considerate during a migraine is about what I need for my alone time. Usually they don't think about alone time as something crucial.
Omg, this is a huge trigger for me. I can remember a few times someone actually made a point to let the teacher know I had said the answer first to a question she asked, after someone else had took credit for it. I had such respect for them after that.
Just because other people don't understand what I need, or why I need something doesn't mean I don't need it! Being forced to go without effective support for 40+ years has NOT "made me stronger" or diminished my need(S) in any way. It's actually quite the opposite, I am 45 next week & it's so bad right now! Omg, I can barely function at all. I watch your videos & usually all I can do is cry. But oddly enough, that does seem to be helping me.
Anyway, Thank You for all that you share. I'm very grateful.
to have found your channel & to you for how much you share.
♡hugs♡
🫶
Allow your brain to metabolize: and perhaps gently remind yourself your processing and that takes random amounts of time
That just sounded like me talking while reading your comment!! Hugs to you 💜🖤
@naynayandwhip5839 thank you
♡hugs♡
Thank you for showing your real self.
I'm 43 and just learning that I'm autistic. Content creators on TH-cam have been really helpful in helping me see myself in the mirror of ya'll. Actually, I think it was *your* video on how autism presents in females that was the light bulb 💡 moment. I congratulate you on the edited videos -- professional, helpful, welcoming. And I THANK YOU for this real moment. This week has been huge for me, with my autistic traits ringing alarm bells at me. Seeing others in their realness is so validating.
I’ve often felt as if I’m invisible, an alien, or speaking a foreign language, or possibly all three.
When people say you're drowning them out, tell them they need to create their own channel.
HELP. Is there anyone willing to show Soldarity with disabled people and just straightup REPORT someone who has only cruelty to spare for disabled folks?
@@slevinchannel7589what would that solidarity look like?
@@winterroses2020 It's been so long, i barely remember, but i guess you can report/flag Bullies/Mobbers?
I realised only this year after late diag @ 56 i have spent my whole life full of cortisol and in a constant state of hypervigilance. I really appreciate your videos!!!
Thank you for being real, Taylor. Sending you lots of love and healing energy. It is so annoying when the people who are always heard are the ones who shout the loudest, i resonate with this a lot, and I've found myself in many situations where this has been the case. It's made me feel vulnerable and less than. I hate conflict and struggle with confrontation 🙈 At the same time, i never want to be that person who shouts the loudest because they can appear very ugly, although it would be nice to be heard. i love this quote...."For beautiful eyes, look for the beauty in others, for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone." - Audrey Hepburn.
Thank you for your kind thoughts and the beautiful quote! 🫶
I joined your Circle group last week and it is the first autistic group I’ve ever given myself permission to join and I can’t thank you and the community you have on there enough for the support and the help they have been for me in just this past week. I am also very much a silent struggler and I feel like I’m finally beginning to have a voice somewhere and it’s a really emotional and beautiful thing to experience. So thank you, Taylor, for opening that space to all of us and allowing me the opportunity to have a voice as an openly autistic person in an authentic way for the first time in my life. I can’t express or explain my gratitude or how genuinely life changing it has been for me enough. Thank you for giving me the space to feel heard for the first time in my life.
"I am doing what I can for all of us." I love that.
Thank you for continuing to unmask in front of us all. You're one of the bravest people I've encountered on youtube. So Real.
I hear you.
I am you.
I support you.
🙏🏼💓🌈
I had to pause to write this down:
The "why" behind your stories seems pretty clear to me: we blend in. We've learned through blood, sweat, and tears over our formative years (especially for the late-diagnosed crowd) that blending in = survival. Sticking out = suffering. We've trained ourselves to the point where it's automatic - blend in or face the consequences. No wonder we can't get our needs out into the open in a way other people understand; that would mean standing out, and that muscle atrophied looong ago.
It turns out that neurotypical people are able to bounce back and forth between blending in and standing out - some are even blissfully unaware that this gradient even exists! They just do what they do and it all works out. For us, it's a manual choice. Unfortunately, when the choice is between the indomitable strength of blending in or the wispy wrinkle of standing out, we're going to go for what's worked throughout our whole life 100/100 times.
Edit: yup I think that was it
Well said!!!
Yes!
This hit the mark. All my life I've felt like I wasn't seen or heard because I wasn't "on fire", even though I WAS on the inside, but everyone else's "emergency" was more important, and I couldn't and didn't want to be the way all those other people were - rude, self-centered, obnoxious...it seemed so easy for everyone else, but I couldn't be like them even if I had wanted to. So I bled, silently, internally...until there was nothing left. I learned to ask for nothing, to want nothing, to need nothing, to be invisible - and became less, everything inside slowly erased, washed away in the flood of emotional incontinence all around me of all those who demanded so much and valued nothing, especially not the quiet, patient voice of reason that couldn't shout immediately enough or loudly enough to be heard over the mob. Even now, if I speak up to be heard or object to being ignored or mistreated, I'm the one accused of being rude, anti-social, selfish, or "unempathetic"- it seems that if you're different and dare to have a voice, the reward will be a marshmallow toasting in your honor, and the bitter taste of ashes.
If you don’t mind, I would like to journal this comment word for word? I’m at work and almost burst into tears; it left like you wrote this from my very own soul… thank you so much for this ❤
@@potatuhtot5125 You are welcome, and welcome to journal it until there's no more ink if feeling it flow onto the page from your own hand helps you - I truly hope it does, from one soul to another. 🙏🕊🤗
I second that. And you said it with such a poetry of words and images. I hear you. ❤
@@augiespicer1270 thank you for the kind compliment - it's my way of growing fresh feathers and trying to rise from the ashes, in hopes of using my quill to inspire others to transform into the Phoenix that burns inside them. If you have to burn, burn bright, be a light in the dark for others, and perhaps teach humanity something about the destructive dangers and unnecessary suffering caused by playing with matches. I'm sorry that you have cause to relate to my words, but I hope they help you not feel so estranged. 🙏🕊
Thank you, thank you, thank you. One part specially hit home. As a child I was constantly wondering how the other children knew the right thing to say in a situation. I was like, "How did they do that?!" Again, thank you. You make a difference.
Amy Grant has a song that I felt so deeply as a child. It starts out, “Some people always know the right thing to say, I don’t really think I was born that way. And with the gift of charm they’re well endowed, I love to watch them float right through a crowd.” YUP!
So relatable ❤
I'm so with you... I hate the way people are always downplaying ADHD and Autism, and now it seems like everyone is tyring to claim it. It's maddening.
I relate to a lot of your experiences, and so many more. I am also female, late diagnosed ASD-Level 1.
-being valued and listened to.
-not showing the expected emotions.
I struggle with feeling lonely or left out. And I really enjoy when someone is actually listening to me instead of treating me like an annoyance.
I am glad you are real and have this podcast that our "subtype" can learn from and relate to!
Thank you!
THIS. yes, I so relate. One story among countless stands out in my mind. I was on a team & we were doing an obstacle course race type thing - there were multiple teams & we were all completing different challenges & tasks, which also involved hiking & such. There was one challenge where you had to light a fire & the fire had to get tall enough to be able to burn the twine above. All the team members on my team were scrambling, raising voices, demanding to try it their way. I kept trying to voice that I really felt like I could do it & I wanted to try. But I wasn't as loud as them & wasn't as demanding as they were. After four failed attempts to have them let me give it a try, I gave up. Finally, they all gave up. They all kinda backed away & I said "okay, now I would like to have a turn." Literally, within a matter of a minute, I had the fire lit. I knew I was able to do it & I did it. No one said a word... they all just scrambled back towards the flame, no longer room for me, & they tried to coax the flame higher & higher. No one said thank you. No one even acknowledged the part I played. It was almost as if I wasn't even there. Still to this day, all these years later, I can remember how that felt. It's a feeling I've felt countless times in all sorts of situations, all throughout my life. There's tension in being thankful I'm not alone & also hating that there are others who know very well what that feels like.
I know exactly what you are talking about! I've been in group classes where the instructor gives a task and everyone works alone. I'm the first to complete the task, but the instructor never notices. Just walks around and announces and congratulations every single person in the class as they finish... EXCEPT ME! As I've gotten older I've started announcing myself when no one notices. I might say "Hey, I did it!!! YAY ME!" Then everyone thinks I'm just really weird...
I haven't watched a ton of videos on autism, but once I started, the ball dropped. Not diagnosed (thinking about talking to the doc though), but on reflection I see this is what I've been struggling with all my life. This video is one of the most valuable videos **on any topic** that I've ever watched on TH-cam❤❤❤❤
PS I've sometimes been unheard, and definitely sometimes been unseen - I was standing in a circle with other adult students after a night-school class, and they were all chit-chatting amongst each other (which for me is immediately alien territory). I chimed in in the discussion and literally people jumped like "where the hell did she come from??" It was a strange moment. I will never forget it.
Your daughter is lucky to have you as a mother. I'm from the generation where "adults are adults and children are children, and never the twain shall meet." I had lovely parents, but it was just different times. I had weird s~~t go on at school or in my life but, it would never have occurred to me to talk to my parents.
Re: 10:25, I watched the film about newscaster Christine Chubbuck earlier this week and noted afterwards that, as a late diagnosed autistic (AuDHD) person, every day of my life feels fatally disrupted, in large part because the rest of the world doesn't understand how unrelatably dysfunctional it is to an autistic person. It's great that we autistics can learn about our condition and support each other more thanks to the internet but the conventional neurotypical world still isn't meeting our needs nearly enough for us to be part of "their" society.
HELP. Is there anyone willing to show Soldarity with disabled people and just straightup REPORT someone who has only cruelty to spare for disabled folks?
There's stakes in this request. Allow me to explain?
@@slevinchannel7589 While I appreciate your engagement it's not me that needs an explanation; as the film demonstrates, the onus is on neurotypical society to acknowledge, understand, accept, and accommodate neurodivergence.
@@slevinchannel7589 I think my understanding of my own argument is sound. By contrast your concern is only tangentially related so its introduction here is unlikely to receive any productive acknowledgement.
@@Hermitthecog So zero Solidarity, huh?
Now we're talking, Tay. As many unedited, raw talks as you are inspired to do are very appreciated. And your new plan for scheduling your classes is just great. And your passion/enthusiasm comes through without the over-the-top "TH-cam Song & Dance." Trust it. Also your autistic Momming of your autistic 4th grader AND figuring out how to navigate school culture/power systems as a parent is soooooo valuable for all of us. Beautiful work.
Thank you for this video. It really resonates with me! There is a story you told in an older video about standing and waiting patiently to talk to your yoga teacher who was involved in a conversation with someone else and then another student just blasted past you and started talking to her, like you were invisible. I think about this all the time because it happens to me on a near daily basis. I don’t know what I’m doing wrong. My attempts to be polite and patient often result in me becoming invisible.
Taylor, totally relate to everything you say. Thanks so much for everything you share. Diagnosed at 62 last year, a host of autoimmune illnesses, recurrent infections, gastro issues and food sensitivities since childhood (T1D, M.E., Fibro, shingles, heart arrhythmias etc). Periodic health crashes which now looking back seem suspiciously like repeated autistic burnouts. The delayed processing, the not being heard, the gaslighting and minimising own needs - thank you for being vulnerable and voicing struggles so many of us face daily and reminding us we're not alone. ❤
Thank you! When you speak so authentically like this, it clears my head and makes me feel like trying harder.
Glad it is helpful to you. Thanks for your comment.
I remember being in fourth grade and feeling lost, out of place, scared, and just straight confused everyday. I just didn't know what to do with the other kids. It was like they all changed over the summer. I had two friends. One didn't like me any more and the other one would play with me sometimes. They were all breaking up into groups and I couldn't be in any of them. I couldn't tolerate teasing. It was awful. I didn't have a diagnosis everyone just thought I "had mental problems" or was a discipline case. So I feel for your daughter. She has something I didn't have. A mother to go to bat for her and a diagnosis to point to. You stood up for your daughter and when you struggled you aught help and support. To me that is incredible. I am in awe of you. I hope you realize how amazing you are. Also, having that diagnosis helps in many ways. When you first started talking about the situation, I thought was this is why I don't have kids. How could I take care of them? How would I be able to deal with situations like that. By the end I was thinking maybe I could do that.
Yes the teasing! I hope this doesn't sound weird but I'm a 5'4" man working with cars and I don't know what to do with teasing or ball busting. I know I'll come off too "sensitive" if I say anything but I also don't know what to respond with so they call me quiet and it's like I don't know what to talk to about with my coworkers and it's just so frustrating they have this view of me and it's not me but I don't want them to know me as well out of fear.
I enjoyed the unedited video format. You are heard and your feelings are valid. Very relatable. Hugs!
I feel you so much on this. I’m undiagnosed with low support needs, left to figure it out my whole life. My son is autistic, just finished 5th grade, and we are both having a hard time with school social issues. He struggles to describe what his problems are, or how serious they are, and I have to decide what is worth contacting the school for. And I don’t know what I’m supposed to be upset about, how upset I’m supposed to be, etc.
Yes. Invisibility. It must have something to do with that "uncanny valley," the flat effect that we have no consciousness of giving off but is, apparently, there. There's like this profoundly sub-SUB-conscious thing that seems to be going on among everybody else, where they've agreed, without even knowing they've agreed, that you're effectively not there. And when you do GRAB the attention in the midst of that group-thing going on, at just the strategic lull you've been waiting for where they have no choice but to give you a listen, you very quickly register that they're being...patient. Which is soul-shrinking. And then you really don't even want to talk anymore and there's nobody in the room dying for you to finish saying it than you are yourself. Funny thing is, I feel so free being alone because there is neither a duty nor a need to put in my own two cents, to join the "dance," to negotiate the dynamics. I don't need to feel like either a slouch failing to hold up my end of the conversation OR the unwelcome intruder. One does actually learn to embrace and love anonymity most of the time, it's such a freedom. Yet there are moments and places where you, like everybody, simply must make your point heard. There is a bizarre corollary to this, however. I am definitely an outsider in group dynamics, yet at the same time I can be called on at any moment to "perform," to come up with some amusing joke or recollection or, interestingly, a memory that nobody else manages to dredge up. I go along in the best humor I can yet I can't help feeling inside like something of a trained monkey called on to do a trick. In so, so many group situations in my life that's how I've felt, like Mr. Not There until the moment comes for "Ken, do something funny the way you do!" Is it any surprise my profoundest peace is in living alone. There are very VERY few people in the world where I feel safe to be both freely quiet when I need to be and freely conversational when I need to be, and like I'm never an object of perplexed, uncomfortable curiosity.
Thank you so much for sharing this, your descriptions are so much to the point: "...you quickly register that they are being patient, which is soul-shrinking". And then being acknowledged for behaving in a way that feels like a trained monkey. This is put beautifully and those may be helpful images for my people to understand...at least I might try. Thanks again!
I completely and totally get it with not feeling I have a powerful enough voice, if feeling unheard and/or ignored. It feels really invaliditing, embarrassing, and frustrating.
I hear you and everyone who responds here, and I so love this community because we're all so real and helpful and belong.
I relate best to these less produced/scripted/staged presentations Taylor. You’re unmasked. Your autism is more apparent as a result. Your struggle.
It’s beautiful and so are you for having the strength and courage to present yourself so honestly. To be so vulnerable.
Thank you
I just had a talk with my boss along a similar line...
"Do I have to light myself on fire" is a very, very nice metaphor for what I felt. Thanks for speaking about it. And no worries about the makeup ;)
Omg, this is exactly my conclusion about why I'm not heard or why I'm misunderstood all the time or even disbelieved! Thank you for talking about this.
Your hair is "a crown of beauty"... it's very personal and important to your self worth....thank you for sharing your struggles....I struggled with skin disorders and digestive issue throughout my life and now understand that my nervous system was under attack all my life from the stressful environment I was raised in.
“The squeaky wheel gets the grease” was the exact phrase that came to mind when you started talking about not being heard and others coming in with guns blazing. It refers more to the noise bringing attention, if you are loud, others will come to find out why. It is assumed that loud is angry, loud is hurting, loud needs more. I am the person you describe, in a way. I let things go, until I feel things have become unjust, or especially with my (now grown) children, that their needs are in no way being met….and I am not one to ask for much, but that is when I go in and ‘lawyer people up’ as my husband calls it. I will run them in circles until they are offering me the moon. I don’t want to do it, it stresses me out, I hate it. I even have people say they are going to sic me on someone if they don’t get answers soon. It is no more natural for me than for most people, I have just learned how to get the attention I need. And sometimes that is with quiet, horrible stares. Being autistic, and ADHD, giving anyone a stare down is excruciating. But it works. And justice is in my bones, the world should be just, and kind, and give everyone what they need. Unfortunately, sometimes, that requires mental force, and I wish it didn’t. It has cost me a lot, and I have lived, like you, under constant stress, and even a panic disorder, all my life. I wish peace, and joy, and justice for this whole community.
I completely and totally get it with not feeling I have a powerful enough voice, if feeling unheard and/or ignored. It feels really invaliditing, embarrassing, and frustrating.
I was diagnosed at age 58. I also have chronic illness, which manifested in elementary school. I lived in a very small town and my parents had no idea that physical and mental health could be connected, much less that mental health issues were never to be acknowledged. Thus, finally being diagnosed, was a HUGE relief, release, and overwhelmingly validating! I have finally been seen and heard.
I am so thankful for your content!! Without your videos, I would never have explored an autism diagnosis for myself (just diagnosed in April). Please don’t lose sight of all the good you’re doing for people like me. Low-support needs and late-diagnosed folks are still in need of community and support. Truly, thank you for putting yourself out there and doing all that you do! You totally inspire me. ❤
This has been me. while I don't have kids to defend, I've had to defend myself at work whenever someone complains about something I've done that was Autistic (hyperfocus, being to the point which they thought was rude). I've had leaders I told about my diagnosis who responded with "I still don't know what that means" after I've had to remind them for the umpteenth time. It's so frustrating and exhausting. Thank you for sharing your struggle and making me feel less alone.
I don't know if I am autistic but have always been quiet/ introverted and relate so much to the frustration that this world is built around who shouts the loudest wins. It's just not a fair way to treat people.
"You're not alone". And nor are you, Taylor. Keep doing what you're doing, because all of us with quiet voices hear quiet voices like yours clearly, and appreciate how you advocate for us ❤
I am also this way with most new situations. Doctors appointments are so hard for me to navigate, especially bc it's a one on one with direct attention and focus and eye contact and slow processing.
And the slow bleed thing is such a good description. Thanks for letting us in.
I have recently decided to not go back to the local medical center. I have been gaslit and it has been made clear to me that they don't care one little bit about me. Medical negligence has led to four months of illness severe enough that I can't work --- and this negligence was noted and brought to attention and challenged multiple times. NO response whatsoever. I've got a new little doc who is now doing mop up for his cohorts with me, but despite his efforts he as only 15 minutes with each patient and is constantly forgetting why I am there and insulting my intelligence by treating me like whatever patient came before me, forgetting who I am, repeating the misdiagnosis made earlier (and so I have to correct him) and I start to get really, really angry and that makes me exhausted for two days. So . . . yeah, I get it.
Go to alternative therapies like Accupuncture and chiropractic! They are a must! And these sweet people tend to actually listen!
I relate. They've almost killed me twice, but my entire life is filled with terrible experiences from these psychopathic medical cretins. It's exhausting, frustrating and traumatizing. Try to float.
@@JohnTheRevelator11 Yep, have always done that. My late mother was an RN and a licensed nutritionist who studied natural medicine all her life, my niece is a newly minted nutritionist, my other niece is a somatic therapist and I too have studied all three of these fields (personal study, no intent to become licensed). However, I live in a very remote, rural place and we only just got our first naturopath -- who I am obviously seeing. But . . . America . . . medicaid/medicare doesn't cover my naturopath or my acupuncturist or the very talented physical therapist (he doesn't bill them) or nutritionists or somatic therapy or . . . you know.
I FEEL THIS.
To be heard... I think people are not ready to receive our ideas most of the time in the moment we mention it. However seeds are planted and (talk about delayed processing...) could be weeks or months later someone comes up with the same idea that i previously mentioned. I just got used to having the ideas way before other people.
Just yesterday i had to send a long email to someone to explain how i felt in a series of situations/encounters that led me to the beginning of a melt down. Fortunately the recipient was understanding and was grateful i brought it up.
Maybe for your school meetings ask if you can record the conversation. Always write down the questions you have long before you get to the meeting.
I think trying to decode is part of our issue, I've given up on it. I ask for a minute to gather your thoughts , watch out that people don't bombard you with information or try to move forward in the conversation before you understand. In other words make other people slow down to your pace. Xoxo your doing awesome Tay. ❤
Thank you for your suggestions and kind words.
Thank you so much for sharing your struggles, you have been an enormous help to me.. You put into words things that I have a hard time expressing correctly .I have always felt like the most misunderstood person in the world. maybe what I have said has really not been heard at all. i am 73 years old and have only realized that I am autistic for a couple of years.. So much of my life now makes sense to me.
This has affected me to my core lately. People solely interpret me by the tone of my voice and my demeanor/intensity... no one hears what I am actually saying or trying to convey. This works in two ways. The way you are describing, and also, because I am very passionate and can get caught up in the subject matter, people think I'm being dramatic or losing my mind about something, when I am literally just talking about it. The end result is always the same, I am just dismissed. And I empathize so badly with not being grounded in the ability to assert yourself, or structure your own communication in a way that neurotypicals will view as fitting. I feel like a different species.
I see you and hear you- 💯
Thank you for being vulnerable enough to highlight how those of us with lower support needs (sometimes) fight so hard. Some people will never understand the cost we internalize and bear. I will never understand people who are so narrow minded as to hate on those representing the full Spectrum- but if not for those who’re willing to weather unkindness to give those of us who relate to your story and perspective intimately a voice- some of us would never be heard. I am deeply, deeply grateful. Thinking of you and your beautiful family ❤️
💗 Thank you
It saddens me that kids are so mean to each other sometimes. And that having to scream and shout to get realistic attention for them is maddening. I’m so sorry to know that you’re going through this rough patch. I’m not a bust the doors down kind of person either so I feel you with how frustrating it can be to see others get all the attention in the moment. Sending you sympathetic vibes from up north…
Thank you 🙏 vibes received :)
I’m so impressed with your parenting. The fact you’re working so hard to figure out how to navigate this with her, that you’re doing hard things like meetings and considering how to advocate for yourself and your daughter. It might seem like to you in the middle of this that you’re getting it wrong some how but I want you to know that from an outside perspective of an autistic mom, you’re so impressive! You’re doing a great job 👏 ❤
And just to clarify I mean I’m autistic and a mom 😅
I really appreciate the down to Earth moments. Authenticity is way too underappreciated, but so very valuable.
I hope it all works out for you and your daughter.
Yes. Yes. Yes. At the beginning of my relationship with my ex-husband, I explained to him that up until then, people hadn't heard me unless I broke down or fell apart, and I really wanted this relationship to be different. It didn't work out that way, but I was aware of this. When I say something, I mean it, and it's important. If I say this is too much for me, or I'm in pain (I have auto-immune chronic things too), or this doesn't feel right, I mean it. And I don't want to have to create drama for it to be important.
Lately, I've also been thinking of simply going unedited (and live?) on my channel because I feel that pressure of putting on an energy that is sometimes (not always) not true of the moment. But because my message is important and I want it to be heard, I feel I need to. I'm not done thinking about this!
I also can totally relate with my insights and ideas being used by other people who then take credit for it.
Thanks for this video.
I lived a full book worthy life, trust me !! I’m glad I’m old though. My life is so calm, so simple, so blissfully MY OWN !! Do I isolate like a motherfucker ?? Yes I do !! But I get out in the world and interact with others 3 days a week or more. The rest is quiet time just for me. The STRUGGLES !!! They’re finished, thank god. I never have to worry about trying to work again, I’m on Social Security now. I’m just chilling and LOVING it.
Thank you for being brave and vulnerable here. It helps.
(TW, anger at medical system)
I’m wrestling with similar anger rn. I’m dealing with health issues related to immune system/inflammation etc etc etc, and so angry and grief filled that ALL of my diagnoses (AuDHD and medical) have happened in the last 6 years (I’m 55), and they are ALL conditions I had for my entire life that gradually got more and more problematic. And I couldn’t get a professional to really listen and help despite literally DECADES of trying. I didn’t know the game rules of how to get the system to respond. But WHY is it a game with rules?? Why couldn’t I say it and be heard and believed?! Why do we have to Prove ourselves? And now my body is metaphorically a multi system small fire, and it didn’t have to be… And I need better ways to help my now-young-adult kids for when their bodies start being more problematic.
Taylor, it’s so comforting to be here where others go through this too. Your Voice Helps Us.💫
12:55 I say that too sometimes, “I feel so autistic right now.” When it’s emotional, when you’re filtering fast, processing with all your will, rehearsing and memorizing to hit all the key points… GAAAAHHHHHH!!!
“What are they wanting from me” is such a difficult question sometimes. But “should haves” are too big to beat ourselves up with…
I think we get so used to trying to present as calm and sane, and so used to gaslighting ourselves, that we don’t know how to strongly communicate when something is very wrong.
I’m sorry you’re going through so much right now, it’s especially worse when it’s for our kids. You’re not alone either 💜💖Sending hugs and/or lots of positive vibes ✨
I have a personal caretaker/ life coach for four years and more.
She always says to me, after our two weekly sessions, that do not hesitate to contact me whenever life is difficult, and I still don't, and I find it hard to do so
My ego (thoughts)is stopping me from doing, still in the form for the sake of my own protection for so called "danger", and it shouldn't be doing because this emergency contact is for my self care really, right!?🙃
I have been in situations that you have described, and I felt exactly the same (so autistic), and I am starting to realise more and more that it is all happening inside and the outside world doesn't notice, and that should be fine and accepted by me and I should know about myself that I am able and capable to deal with it relaxed and more at ease when I do it my own authentic way ☺️
You also have your unique and authentic way❤️🙏🏽
I think it's difficult for us to help other autistic people to navigate because that's our issue. We just communicate differently, see the world differently. It's difficult to know what to do when dealing with neurotypicals. Big hugs.
I started tearing up, listening to your explanation of being heard. I still remember how as a child I felt as if I needed to put on an act, so I don't have to go to school. Not because I didn't like school (quite the opposite, I loved learning and talking to teachers), but because I felt horrible and wanted to lay down. But unless I had a fever or clearly visible traits of 'actually' being sick, no one cared. (I didn't realize until much later, that I was very sensitive to light, I always had headaches, almost every day, until some doctor mentioned Migraines, and that led me to consider Light as the issue)
Similarily, whenever I stayed home from School or Work on my own accord, I would get judged by my Grandma (who I am taking care of, and who can enter my home at free will), for doing anything but laying in bed. (How dare I need food)
I started to keep a smile on my face at all times, talking in a loud, quirky way and being all energetic, to finally be heard. It worked, but yknow, at what cost? The amount of exhaustion I feel when I do that, I can't even explain.
Your Video let me feel heard, so thank you for that. I, and many others, hear you, too.
Much love, to you and your family.
I'm a nearly 40-year-old woman who has started becoming convinced lately that I'm autistic. Thank you so much for this perspective on school! It's giving me some relief. My son has days where he "doesn't feel well" and wants to stay home, but when he's home he's fine or needs to talk through something with me. I chatted recently with my FIL and found out that he's been convinced for decades that he has autism himself, and that he sees signs of it in my son. I used to have times like these myself regarding elementary school, so I sympathized, but I didn't want to project my experience on him and didn't know how to handle it when he wanted to stay home. It's especially hard when my husband doesn't want him to stay home, because he doesn't want him to grow up to avoid things he "doesn't feel like doing". This has been such a helpful comment.
I think that, speaking personally, everyday is a huge struggle. I am self diagnosed autistic, waiting for my assessment, and I really find life hard and always have. I am grateful for life and its beauty but so much of my time is spent just trying to function which leaves little time to enjoy it which makes me sad. I am slowly trying to adjust my life and allow more time for me and for self care to hopefully help me function better in this world. As a high masking 51 year old I have hidden all of this for so long and it has only shown it's toll on me in diagnosis of Anxiety and depression throughout my life but never with a cause for it. I am so grateful to people like yourself Taylor who do make me feel heard and help me see I am not a freak or a let down in this business of life!! I have a great family who are supportive but even they are surprised to learn about my self diagnosis and how hard life is for me, as I have hidden it so well. I think that is why we end up feeling like we need to be on fire before we are heard as alot of us just frickin hide how tough it is. Big hugs for you and the community and thanks for all you do.❤💕⭐🌟
Thanks for being so open. I can relate to many things you mentioned. It's frustrating. Coping with such situations is really hard and confusing. Often I ask myself why I can't show or communicate my feelings so that others understand. I usually leave similar situations as if I completely failed. Being unable to speak up, understand the other person's intentions (sugar-coated), respond accordingly. Always on the defensive. Only later I understand the situation better. - On a side note, listening to you reminds me of how I try to make sense of the various thoughts in my mind and put them into a sequence of words.
sometimes fun videos are not what we need to see. there is a shortage of videos like this. so thankyou :)
I think sharing some of your story (without specifics so as to protect all parties involved in said stories) is a good way for you to process what you are going through and it also helps others who may not have come to a situation like yours before. I am glad you opened up about your recent struggles. It opens my eyes to the types of things autistic adults have to endure on a day to day basis.
I am old enough to be your mom. I' ve gone through almost all the things you bring up and it's really validating. It's just amazing. The thing about saying something and no one caring and someone else says the same thing and it's suddenly a great idea - that has happened to me so many times In my life. It's all so much.
What is this about? I'd love to know the nuance of this
Dear Taylor, I wish I could give you hug right now! I relate to everything you say, all the secret struggles and feeling like a dummy when the words won't come when you really need them. And believe me when I say there are times when you MUST pitch a fit to get the attention you require! Please keep doing what you're doing and take care of you!
I feel this so much right now. My 5 year old keeps fighting bedtime and gets in and out of her room at night for hours. I take forever to fall asleep as it is, and I’ve been trying to develop an early morning routine for myself lately to get a calm quiet start to my day, so I’ve been exhausted and not as patient as I’d like to be. I hate feeling like I have to scream to be heard or taken seriously. We randomly had people show up unannounced to our new home yesterday, and instead of being authoritative and demanding to know why they were on my property, I essentially hid in the corner until they left, and my husband didn’t understand why I didn’t ask who they were or what they were doing here. Delayed processing is a great term. Thank you for your videos!
There is such a huge benefit to be on the receiving end of your "unedited" video, It is good to know that you go through the same tough moments (though specifics are different) as I do. I'm sure the same could be said for those who watched this one. I too feel like screaming that I need help NOW... but I don scream.. Also, parenting is the most difficult job on the planet. Remember that!. Others might make it look easy... but it never is. it's the thing you want to do best in your life.... so you see your shortcomings. I will tell you that if you are having conversations daily with your daughter about school social stuff... you're doing a great job. Hang in there Taylor... the dark days pass and struggles change, but probably never go away.💕💕
Its so refreshing to hear you being raw and real! Thank you, it really helps people going through the same thing to feel connected and validated.
Thank you for being vulnerable and sharing your experience, Taylor. Sending lots of love and positive vibes! It makes me feel sad to hear that you receive comments that claim that you are taking away from the voice of people with high support needs. The way I see it, this is not a zero-sum game. Someone sharing their experience, struggles, and learning, does not come at the expense of others. I think there is room for everyone, and I've never heard you claim that you are speaking for the entire autistic community. If anything, you are very clear about emphasizing that every autistic person is different and that all are welcome. The content you share, your online community, and the monthly connection groups make me feel seen, understood, and help me experience a sense of belonging that has been hard to feel somewhere else. With your content, in your classes, and in the connection groups, you are thoughtful, kind, and validating of the experiences of others. If anyone is on the fence about joining one of the connection groups or the online community, I hope they seriously consider joining. Thank you for all the support you give to this wonderful community!
Thank you so much Alex. Your words help me feel encouraged and supported! Love the energy you bring to our amazing community.
What a beautifully vulnerable video. Thank you so much for sharing this. This is what poured out of me after watching your video:
It took me a long time to discover that my core wound is, not feeling seen, being missed. Soon after, I discovered an even deeper aspect, when I don't feel seen, I feel abandoned and neglected. And just a few days ago it dawned on me that I bet that is the core wound of MANY autistic folks (I almost want to say most right here but don't feel like I have the evidence to back that up, just intuition).
If you look up the effects of abandonment you will see many of the things autistic people struggle with codependency, anxiety, attachment issues, CPTSD, avoidance, isolation, frequent physical illness, etc. I think this is why I know so many autistic folks, including myself, who where raised in relatively loving, supportive environments but experienced trauma as if they were raised in abusive situations. I know of course there are autistic folks who aren't as fortunate to have environments like that and I can imagine the effects would be significantly worse.
I am sure there are those who have strong feelings one way or the other here about Gabor Mate. To sum up some of his work: trauma (especially early childhood) causes autism and ADHD (along with other things), and the underlying genetic component is sensitivity, highly sensitive people are prone to be more adversely impacted by traumatic things. I like the connections that he has made and his approach to solutions.
But I will say, as with any subject, I think there is harm in thinking there is one cause or one answer to an issue. And there certainly is a fair amount of evidence that trauma can cause neurodivergent conditions at anytime in a persons life. My favorite herbalist recently interviewed someone who developed ADHD after a violent attack, years later after working and healing through the trauma, the condition resolved. Again I think it can also be true that some brains are just born neurodiverent without the trauma as a cause. And I am not saying neurodivergence is something that can just be turned off. But all of these experiences and all the different data can help us find what is true for our own self and our own experience. What if it all the points of view about why and how neurodivergence works, can be true.
My own personal truth is that I experienced abandonment from my first moments in the world. Working with my therapist has helped me uncover the feelings I still held in my body because of my birth situation, being born cesarian in 1981. And the beautiful part is I was able to heal that, and also hear my mothers version of what happened, she wasn’t supposed to be conscious, the doctors didn’t know she was conscious, but she fought with everything she was to stay conscious to make sure I was okay and hear my first cry. I felt alone and my mother was reaching out with her whole being, but my little nervous system wasn’t getting the messages that come with a conscious un-drugged birth. The best part is she revealed all this to me without really knowing what my internal process about it had been. I also had a mother wound that went back through my matrilineal line about 4 or 5 generations, I could hear this wound when my mother told the story of my birth. It went through the heart of each woman to me, it felt like wanting to be loved so badly it made an enormous hole in the center of me, and it had been present as long as I could remember. Healing that for myself and my mother and my ancestors before filled the empty core of me, the gaping hole that had been there my whole life.
I was so sensitive as a child I have much trauma from when I was very young, so impacted by everything.
I also see that neurodivergence runs in my family on both sides I think of it as a generational trauma or wounding in this way.
I have been overwhelmed by my autism lately too. I feel paralyzed by it. I have been running in survival mode for so long, it is time to be in burnout. This is where I rebuild. This is where I nourish myself. This is where I learn boundaries. This is where I heal.
I used to be a teacher. For five years in public school. And hearing you speak about your recent experience brought tears to my eyes as if I was mourning. And I think I was mourning for my past self. I always felt like I don't know how to talk in these meetings where I can actually do what I am meant to be doing. Communicating the child's strengths and needs and struggles, and how I was dealing with each factor. Honestly, I shouldn't have forced myself to continue teaching for as long as I did, but I didn't realize I was autistic at the time, and I felt obligated to continue. It was my chosen career, and I want to do everything to perfection. Not that I will reach perfection, but if I don't reach for it , how can I say that I did my best in the case that I fail. And I was literally killing myself. To the point I had to quit.
Also I so experience issues with being heard when I need help. When I was in a car wreck as a 19 year old, I called my dad for help, (who for context loves me and wants me to be okay) and when I told him the situation, he was worried about my car. My sister called a few years later and he went out of his way to make sure she was good and not to worry about the car. I talked to my mom about it years later, and she pointed out at the time my sister was freaking out. I was calmly explaining. We were both fine in both situations, but the way we react to big situations is completely different
This is what set us on the road to homeschool. When my eldest was 3yo he attended a preschool 5 hours a week. He was undiagnosed and the other kids were bullying him. When I tried to advocate for him, the teacher said “this is how he will learn”. I saw then that I would be forever having to set myself on fire to advocate for my kids for the rest of their time in the school system. And I knew I couldn’t do that for the next 18ish years. And so homeschool was a proactive way of creating a safe environment for my kids, rather than have to react and fight the battles that would come..
I remember being actually taught in my late 20's (I'm 50 now) to make my face and vocal tone more expressive - feeling like I'm exaggerating - so that other people would perceive me as "normal". There was no discussion of autism, just honest feedback about how I came across. That form of expression has since become a habit, but it does make me tired after a while. So does having to be on the receiving end of it. Like you said, a lot of us are sensitive enough to pick up on subtle things. I really appreciate your calmer demeanor, because I understand you well, and I don't get tired listening to you. So many content creators (of all topics) come across so strongly, you're like an oasis of calm and relatability.
Also, your kids are so lucky to have you to help them navigate the social landscape. Even if you struggle to understand it too, you are engaged and helping them figure it out, going into uncomfortable situations to support them. When I struggled socially, my mother just threw her hands up and said she didn't know why I was having so much trouble, and I felt so alone and like there was something wrong with me. It's taken time for me to learn that while there is something different about me, it's not wrong.
Keep doing what you are doing, and know you have experiences to share with the world. No regrets or remorse. You are our sunshine and light and love.
Thank you for your vulnerability today, Taylor. I personally needed to hear/see you in this space today. I’m having a very difficult time trying to navigate how to maintain relationships with people who don’t seem to hear me when I state my needs or thoughts calmly. I don’t want to be dramatic and further stress out my nervous system in order for my needs to be validated. I’ve had such a stressful month of saying (like you) “in this situation I feel so
autistic”. Hope you take
this right way, but coming to your channel
is often a way that I stim. I feel “normal” here. Ty!
You are wonderful and extremely relatable. I appreciate your honesty and clarity, and ability to be courageous enough to push past the few, but certainly significant, comments that aren’t supportive. You have helped me understand myself so much, and it makes me tear up hearing you not just talk about your experience as a late diagnosed autistic female mother, but to see your thought process while watching and the similarities in how you express yourself. You will help change a lot of lives.
Depending on the dynamics of your daughter's school administration, it might be a good idea to explain to them that you're autistic & don't understand the dynamics so that they're aware & might be able to adjust how they communicate with you.
yeh right, good luck with that... I dont mean to be cynical but I guess I am. Most people dont get it really, so putting yourself out there ... to administrators, I would just find that another exhausting time-wasting and possibly damaging rabbit hole?
@KimCalder It depends on how aware & sympathetic or how unaware & judgemental they are. I work in a school-based setting. Some know that they must be understanding & accommodating towards the parents. Some don't even think adults can be high-functioning autistic & raising children. But for those who are the former, you can say that you're on the spectrum.
46yr old late diagnosed here. I totally understand this. ❤
Thank you for being vulnerable on such a public platform.
I grew up feeling like I had to light myself on fire to be heard...I cannot imagine adding children into the mix. Please know we appreciate you.
My heart is with you
Thank you 🙏🏼 I really appreciate your comment
Also, I agree us autistic people are able to see things other people don't which sometimes seems it's even less desirable for neurotypical people to want to listen. So, if you ever wonder, you're not crazy. It's just another aspect. Much strength to you.
I'm hearing you. This makes me feel so seen too. I have a 10 yo son in 4th grade with ADHD and we've been going through med changes and ASD eval. I'm an AuDHDer. Dealing with school and trying to figure out a 504 or IEP. "A quiet struggle." Yes!
My brother remembers probably the most Autistic thing I ever said, "I like people, I just don't know what to do with them." I Dow remember saying it but that is me in a nutshell.
I relate to everything you said here. It is so validating to know it's not just me. Self advocacy is still difficult although I am getting better at it with a huge amount of effort. It's exhausting. Thank you for sharing your journey.
thanks for sharing. I bet this hits home in varying degrees to all of us. Glad to hear you're overall OK. Know that we all appreciate what you do for the community and love you exactly how you are - good days or bad days.
🙏
Ugh I know. Every single day is such a struggle. Thanks for sharing your realness
Your voice and the way you speak so calmly (like myself 😊), gives me comfort and calms my anxiety, when I feel lost in this world.
Hearing about your experiences helps me learn more about myself, while I am still waiting for my assessment. Only 3 weeks more until the first interview, not that I need others to tell me, but for my kids sake I think it is important.
I’m 47 and my oldest daughter of 13 just got her Asperger’s diagnose, that is why I got the notion that it fits me as well.
But hearing your struggles with your kid, resonates so hard, with my own 2 daughters of 10 and 13 and what they struggle with in their social lives.
I also have trouble finding my time to say stuff in these meetings, I feel like nobody is seeing me, or they do and think why is he not saying something?
So believe me you are heard and felt, by those that need to hear you 🥰.
And this raw view of you, makes it so much more real and connecting. Your courage to do it, still knowing there are voices that will speak badly of it, is so impressive. I can’t find the words to describe what I think of that, but bravo 😊
You helped my best friend, my love, my carer, my everything to understand how it is for me more. That was a blessing for both of us. Now I get to try and struggle onwards without him, with my first official autism care team, 4 years too late because me and my Ian weren't on fire, they appeared almost magically the day he abrupted died (21/05/2024). Now I have to try and be heard and advocate for myself and try to do everything that doesn't compute and on my own without my rock/my constant, my knight in a pair of Nike.
I’m so sorry for your loss ❤
Not a mother part but this is exactly how my life has been going for years and it doesn’t seem to matter even when at extremes.
I don't think I have ever related to something as much as I relate to this video. Thank you, Taylor.
I really prefer listening to people talk without performative emotions. So thank you.
I have Alopecia areata too. My first spot came at age 11. I'm also autistic and I'm also ADHD. I also have a variety of chronic illnesses. I appreciate you speaking for us. ❤ thank you. Hugs (without touch, lol) offered.