High or low functioning autism? Why functioning labels hurt us
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- เผยแพร่เมื่อ 24 ก.ค. 2024
- High or low functioning autism? Both are unhelpful terms
This video is all about high functioning autism (adult), and why I believe we need to stop calling autistic people high or low functioning.
I talk about how functioning labels came about, a little about Asperger’s syndrome and the DSM V change, and why functioning labels ultimately harm all autistic people.
As always, this is just my opinion, I don’t speak for anyone other than myself, but let’s try and keep it civil in the comments please! ;)
Framing this argument as a battle between low functioning autism vs high functioning is unhelpful because a lot of the accommodations we might need end up being the same, even though our outward presentation may be different.
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Hope you enjoy my first video of 2020! It's a very complicated topic and I hope you enjoy the final product. I'll be on live chat for the premiere...
Yo Samdy Sam I clicked the reminder bell.
3:30pm.
Sorry I will miss your first live chat of the year as I'll stuck in a biz meeting😒 but, I wish you all the best and please make it funny as you cheer me up knowing I am not alone in this scary world. 😊
That's why I am very wary of using any hierarchical terms of description. Although, when it comes to wilful and/or malicious ignorance I, then, let rip with every epithet imaginable. Unfortunately, there's far too much of that about. I can't understand, or put up with it, because I cannot reason sensibly, or rationally, why they are about what they're about, or why.
I just want to say, that your shirt is really cute
This video is excellent!
"low functioning neurotypical" I'm really tempted to start using that.
@Nicol Valentina your comment made me laugh too because that’s such an autism struggle lol
@Nicol Valentina LOL perfect example of that! Thanks haha yes it was intentional
That qualification of norms is redundant, they all are.
Yes 👏👏👏
Low-functioning neurotypical = The person who's absent for all their group projects
Neurodivergent person: thriving in a supportive healthy environment.
Neurtypical: *surprised picachu face*
😂😂😂
Neurodivergent Persons: Solves very advanced IT problems and needs help for doing household.
Neurotypical: *surprised Picachu Face*
Neurodivergent person: remembers things when he was 3 and needs help in simple paper work.
Neurotypocal: surprised picachu face.
Floxy I have ADHD
Neurodivergent person: is able navigate the crazy nyc subway system, travel, and go to big events with friends independently, but needs help with pulling cash out from a bank account i hate having.
Neurtypical: *surprised Pikachu face*
"Autism is NOT a dirty word" is an excellent (and much needed) tagline.
I found out after I recorded it that another youtuber (Stephanie Bethany) has this on her merch!
Yo Samdy Sam thanks! I want that :p In my environment, it is a very dirty word (thanks guys).
Horselovercrazy990 I spoke to Stephanie about it in her comments.
She says saw.
Indy Andy and Stephanie did a Colab in the past.
Andy replied to same comment saying that would be good.
I used autism as an insult when I was an ignorant teenager. Now, with an extremely high suspicion of being autistic myself, I feel absolutely horrible for perpetuating the stigma when I was younger
I am always terrified about how people (other than family and friends) will react at finding out that I am autistic. It's terrible that I have to worry about if people will suddenly think that I am less-than, even though I am still the same person I was before I told them. I've never been judged for saying that I have ADHD or OCD, yet autism makes so many people kind of gasp. :-(
I once heard a girl say 'functioning labels are not how my autism affects me, but how my autism affects you'
Very well explained Sam. You have highlighted a lot of issues I have come across as an ASD, but never put much thought to.
Next time I'm referred to as a mild autistic, I'll politely insinuate my life isn't quite as it always appears.
Thank you for this video!
makes those home videos from "warrior mamas" look a lot different then
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
Yes, and for some of us we got tormented to the point where we redirected most of our energy to masking at the expense of our mental health and well being. Yes, it probably is somewhat better to be able to mask than to not, the reality is that even "mild" autism isn't mild at all. Sure, I can usually talk when I want to and hold down a job, but for most of my adult life I did kind of float between things with long breaks in the middle and when I was working, I was pretty much useless for much of anything after work due to all the masking.
When people are watching, I'm usually "high functioning", when nobody is looking it's another story.
Mark McMarkface Love it sad but true.
Haha ,literally sometimes I feel like I have schizoidal cause when nobody's looking I am a different person and I talk to myself
:-))
God same
Truman you have got it!!! Since watching Sam more and learning more about masking and it’s cost I’ve been trying to let my make down in public. I’ve been telling myself stimming is better than a meltdown. I’ve been flapping at the store and I have NEVER stimmed in public before that’s how intense I can mask. I only realized after these videos how much I stim in private so I’m glad now to learn more how to help myself.
I stim now without shame and I also finally allowed myself to avoid eye contact with every cashier when I need to do groceries. It’s been such a relief and feels much better!!
Most of my life I was just dismissed as lazy,stupid, annoying, quiet, and problematic. No one bothered to find out or understand why I was the way I was during my childhood and teen age. Not the teachers, my parents or anyone else. I'm fine as an adult now but things could've been much better if someone in my life could've been much more understanding and found me some help when I was a child.
Same here, just got diagnosed a month ago I wish I had support as a child
Me too. I think my life would have been way different.
me three :)
Yeah my executive functioning problems were misunderstood as laziness especially when it came to cleanup. Since I didn’t know where to start I would get stuck/ hung up on something minor like organizing my shoes and then take a break and it would make my mom think I didn’t try. I think after a while my dad understood what I was up against because I was on the verge of tears telling him I didn’t know where to start and I think on some level he could relate. If only they had known when I was little. I got diagnosed at the tender age of 21 just a few months ago.
This has been my experience too. I was diagnosed at 56.
“I didn’t even know it was autism, I just thought I was terrible at life” thank you so much for quotes like this... I’m waiting on a very very long waiting list for a diagnosis and I can relate to everything you say. I’m in my 30s and have been wondering why I find life so much harder than everyone else. It’s finally all clicking into place and I’m so glad I’ve found your channel. Thank you x
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
I'm hoping everything went well with that process. I'm in my early 40s, and finally got an ADHD diagnosis about a year and a half ago. It explained so many things but not everything and I've been finding so much that makes sense while researching autism. I relate to this quote so much.
SUCH a good point that people tend to dehumanize “low functioning” individuals.
In my experience “low functioning” or “obviously autistic” people get free passes for their mistakes and receive sympathy, love, and compassion while “high functioning” people are expected to fit into a societal mold and are ostracized if they don’t meet the right criteria. But yeah “high functioning” people still need support.
Oh boy do I argee I funking love the education system
I work in a school for autism called new horizons in VA. The low functioning kids are not getting anything out of it and they are taking so much away from the other students. They have diapers and zero communication. They are physically dangerous to staff and other students. But I’m supposed to sit there and pretend I’m teaching Them how to read and write ect.
@@opalskyartwork The free passes may mean people don’t expect much of low functioning autism and do stuff like infantilisation and gaslighting behaviours towards low functioning autistics.
@@opalskyartwork 'low functioning' individuals are also the ones who usually can't get certain medical treatments like donated organs due to discrimination. I see where you are coming from, but ignoring unusual behavior is not the same thing as treating someone better.
"Autism is not a dirty word." THIS! This needs a be taught about in schools.
My cousin was diagnosed at a very young age, and was subsequently put in every remedial class they had in his schools because "someone like him couldn't be in the normal classes." (Not bitter at all about that if you couldn't tell >:( people are so stupid sometimes). Yet he can play several instruments and can give you title, album, and artist of any 80's rock song from the first two measures. But sure, he "isn't capable of doing those kinds of things."
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
same for disabilties in general
I’m afraid to “come out” to friends and family members as autistic because I fall into the “high-functioning” or Asperger’s end of the spectrum, and I’m nervous about a) neurotypicals not believing me and b) not being accepted by the autistic community for the same reasons you outlined in this video. Even telling some people that I’m introverted or have some social anxiety (major downplaying it), they respond that they “couldn’t tell it by the look of me” or that I “seem pretty normal.” It’s very refreshing to watch your videos and know there are supportive people out there.
Allison Hardin the sad outcome of being good at masking 😕 it is the same for me - I even doubted it myself that I might be autistic because of how well I can pretend to be „normal“. I feel your struggle.
I want to get an official medical diagnosis for this reason (despite hating this type of medical assessments and being scared a lot of not being believed): so I can prove to people that it‘s really autism. Before I get the paper, I will not dare to tell anybody.
@@mojsakmojsak Exactly me too
Your struggles are real and you’re not alone😊 I think that if they’re great friends they’ll understand if you tell them your struggles. If they downplay it you could express that it feels dismissive. If they aren’t cool with that I’d say try to find new friends, there are a lot of great people out there😊 try aspie meetup groups or something of that nature to help you get more comfortable talking about it
Same for me; but so far my most sensitive good-listeners friends (many are therapists, as I am) listen long enough to start getting it - the rest I am inundating with videos!!! Including the people in my family that I feel closest to. SOme I am not talking to yet, I am going to certain persons in order, to set up my support system. I am updating my understanding of myself and I do insist that people who love me will have to keep up if we are to keep on understanding each other and knowing who we each are!!
"because I fall into the “high-functioning” or Asperger’s end of the spectrum"
Is it your opinion? Or have you been diagnosed with autism by someone qualified to do so? The fact is that you write nothing about hardships with managing life, or having motor/phonic tics. If people tell you that you "look normal" then there is a chance that you are one.
The part about priviledge really struck a chord. I grew up relatively poor, and by age 18, I moved between 7 homes, 2 countries and 6 schools (with classrooms of 30-40 students), and as a child my autistic and problematic mental health/learning disability traits were very pronounced. I did get a lot of support at school, which included meeting a psychologist, speech therapist and other specialists every week to work on my problems, but I always felt like this was the wrong kind of support. The minute I left school and started studying a subject that was right for me, everything got a lot better and now I have nearly no autistic or mental health traits at all. Many specialists say that autism gets better as you get older, but I think that as you get older you have more freedom to choose to live a life without negative things, like children who constantly distract the classroom, a society that requires you to be super social, or constant repetition of the same task, all of which were parts of my childhood unfortunately.
Thank you for articulating what I suspected but couldn't draw on my own experience to confirm. I think you do have more freedom to make a better environment for yourself as an adult. It definitely helps.
@@YoSamdySam By the way, due to my experience, I am actually very much against getting diagnosed during school. Due to my diagnosis (this along with 17 others), I couldn't enter the gifted program due to difficulties in nonacademic areas and my teachers and parents would convince me to change my friend group every year. If I weren't diagnosed I could've been able to study at an academic level that suited me with people who had similar interests as me. Years of being in an academically oppressive environment in school made me have to adapt, which made me have a lot of mental problems and forget completely how to learn, which eventually made it very difficult for me to succeed in university. Maybe getting diagnosed (not just with asd) as an adult is a good thing, but as a child, it mostly hurts.
@@nsa7637 your experience is totally valid, and I can definitely see how having a diagnosis can negatively impact you when the right resources aren't available. Personally I wish that I had been evaluated as a child, as I was diagnosed with ADHD and, though I still identify with that condition, I regularly wished I had more support and understanding in grade school.
Becoming an adult and learning how to do things my own way really has helped me find a better place to function and still be myself. I'm still struggling to afford evaluation opportunities that would allow me to achieve this diagnosis, but the more I learn about autism spectrum, the more I find those missing pieces.
@@nsa7637 I too was diagnosed with ASD early, though mine was before school. I don't feel like having a diagnosis impacted my academic life, and I'm sorry you were denied from the gifted classes. I will say, though, that I picked up a certain amount of stigma about autism, and since I heard that it was who I was, I thought I was a bad person who would never amount to anything. I really wish that in elementary school I had the understanding that I'm not broken and, as Sam said, autism is not a dirty word.
Well said!
People have no idea how much of a continuous struggle this has been for me since I do so well at masking since I was little and didn't even realize what I was doing.. and because of that I worked so hard to not "look weird" when I finally seen a specialist as a kid.. so I just struggled alone with this for 4 decades...
Definitely know how that feels. Trouble is, I had to be a carer for my mother for decades and I could get no respite until I was hospitalized for exhaustion and self neglect, my ichthyosis legs were bleeding. Even then, little notice was paid, even being her sole carer. As my assessor put it. "You were dropped into exactly the wrong situation". There isn't a final recognition, as far as I know, whether my particular Asperger's and the Ichthyosis - both hereditary - are comorbid or not.
Brain T Masking is hard on males to in childhood.
But boy mask but it's difficult it did depend what decade you went to school in.
If you was at school in the 90's like me.
Aspergers was unknown and you had a oddity about you:
I look after a fully autistic child as it was called in the 90's.
I was not classed as being as bad as that back then.
I couldn't have autism I can communicate non stop on my favourite subject.
Sadly In childhood you was either hardly verbal autism or normal.
So until I got 16 it wasn't pick up until I got mental health problems.
I'm pleased that you can be seen as almost "normal" now since years 2000 when aspergers was suddenly heard about.
If I talking someone without autism, I just used labels to make them happy.
Mild and high functioning.
Or I'm not much different to anyone else.
Around people on the spectrum.
I don't use labels.
I don't know if you can relate to any of that.
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
"I just thought I was terrible at life."
That hit me so hard. I'm not diagnosed with Autism, but I relate to so much of what's in your videos. I had melt downs nearly every day as a kid over how clothes felt to me. I still struggle any day I have to wear a bra, though I haven't had a full blown meltdown in a long time. My mum was told by a special ed teacher that I'd probably test on the spectrum, but she never had me tested. Now I'm almost 30 and struggling to cope in the real world.
Bras are the worst! They're so annoying, I've only found one or two that are comfortable for most of the day. Clothes have always been a problem for me, When I was little i would find a couple of outfits that where comfortable and where them to rags.
@@sophiaroth1930 Same for me! I get so irritated by clothes and struggle to find things that I’m comfortable in always
It's interesting how people react. My wife says I'm not autistic because I "have empathy", while my old mentor at Founder Institute said "not to be flip, but I just assumed you knew." This is seems to be a difference with exposure. My old mentor has been an executive an several global tech companies where up to 30% of her coworkers were autistic, and, as she commented, most of her boyfriends. Lol.
Eric Princen I recommend you show a certain TH-cam video to your wife. “Things not to say to an autistic person” from the channel BBC Three. One young woman there has the perfect reply to your wife. This belief that autistic people have no empathy literally makes me go ballistic. Similarly, I’ve met parents at the playground who saw my autistic seven-year-old son and told me that he can’t possibly be autistic because he’s “too friendly.” Arrrrrgh!
Eric Princen Biggest misunderstanding is that autistic people are not empathetic when we just demonstrate it differently than neurotypicals. I think we are perhaps even too much in some cases.
I mean there are alot of cases like in my own case where i can act like i have empathy but will feel nothing on the inside.. if it’s something about an animal i am very empathic and will react very heavily.. however for another person i will have very little empathy.. if i were to see someone on the street get hit by a car i would act like i care if it happens close enough to me or if i’m with others but if i’m all alone and it’s just me there the person getting hit and the person in the car i would call 911 (or 112 here where i live) because it’s the decent thing to do but if there are others to call i won’t partially due to my heavy phone anxiety and the fact that i really just don’t care..
Eric Princen I personally feel it more a issue of theory of mind especially when I was a aspergers boys.
Than a lack of empathy with autism.
Samdy thinks that theory of mind is not as big issue as Baron Cohen studies of autism is.
Baron Cohen Create the Sally Anne test on children. It supposed to show deficit in theory in mind in autistic child.
Have you heard of the Sally Anne test?
@@garyfrancis5015 : I have not. I'm new to this, so soaking up information. Thank you for the pointer.
When I first got my diagnosis, about 5 or 6 years ago, I referred to myself as having Asperger's, but, after spending last year waiting for my P.I.P. Tribunal and getting so stressed out that I had a catastrophic irreparable bust-up with the only two people I trusted, I now refer to myself as being High-Level Malfunctioning.
I think NT's tend to view Asperger's as meaning just a bit quirky and thus don't pay any attention when I try to make myself understood or they refuse to even consider trying to understand me, or to make any allowances when I don't fit into their NT ways.
I wish there was a book, "How to house-train a neutie" that could give me some hints on how to make sense of NT's, or at least give me some guidance on how to achieve World Domination. [possibly a humorous comment]. :)
Looking forward to hearing your views.
I am stealing "high level malfunctioning" for my own use... Muahaha
@@YoSamdySam Oh good ! Lets see if we can get it in the dictionary. :)
Love this :-) am definitely using it too :-P
Fortunately, I am an artist and Surrealist. Since atypical comes with the territory, I am comfortable with that. Pushed a little, I also say Asperger's and dutifully explain.
@Truman I think that they would, literally, change their perception in the unlikely event that they would suddenly acquire it! The sound and visionscape would quite quickly take on a whole new dimensional shift.
I’m a Very “high functioning” 56 year old male, recently diagnosed, scored a 223 on the RAADs-R. So very autistic and and high functioning exists. I’m proof. I really do need support.
Woah! I never considered how much family, school and home stability throughout life would impact on the relative "functioning level" of an autistic person. That makes so much sense! A very useful video - thank you for making it!
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
I recently got diagnosed with autism a few months back at the age of 40. Most of my family and friends didn't understand why it was so important to me to be able to identify as autistic because, I AM AUTISTIC! I'm really good at coming across as neurotypical and considered "high functioning"... After many years of trying to get life right. It drives me crazy whenever I am minimized and looked down upon for "labeling" myself as autistic because I just don't look like it. The overall perception of autism is starting to change so thank you for putting out there it's actually a positive thing and for being proud to be autistic.
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
This is liberating. In the past I was reluctant to declare my autism because I was not like my "low functioning" brother. Very recently I had a moment of clarity that he and I were similarly autistic. The only difference is that he also struggles with a significant intellectual disability. Seeing my brother's situation as comorbidity means I understand him better and I don't have to get into loops of guilt about describing myself as autistic too.
Really good points. Especially about the mental health bit "Just get on with it" is something no one needs to hear - Autistic or not!
Yep, I've heard that more times then I can count, along with "just put yourself out there" :(
Or my personal favourite "keep your chin up" Aarrrrgggh!
This thing saying im doing something wrong
HI Sam! I'm diabetic, type one, and genuinely laughed full on out loud at the mildly diabetic allegory. Nicely done :)
I've always considered "high functioning" to be the more invisible end of the Autistic spectrum, while "low functioning" is more likely to stand out overtly in a group of neurotypical people. By invisible I mean a random person that doesn't know them for very long might think they're unusual in some way but wouldn't expect them to have a disorder.
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
@@bolinhong2598hey, gfy.
It’s like the whole world forgot how to use manners and etiquette in regards to people who are struggling with certain aspects of life. My mom was very strict in what was said around me and stressed not labeling what I was and was not able to do as she herself was labeled as a child in such a way that hindered her academically. It wasn’t until later as an adult that she swapped work with another person who was given 100% approval in all they did to find out that it was herself that was being judged and not her work. Very sad.
I've diagnosed myself with autism about six years ago and have recently decided to take steps into getting an official diagnosis this year. I remember some time ago, talking to a friend about this. Now, I'd told him about my self-diagnosis before and he'd accepted it completely and that was lovely. But when I told somebody else about it some time later, that person was really dismissive and made me feel really stupid and defensive and I should not have to defend myself to someone, who barely knows about Neurodiversity when I've spent years reading up on it. Anyway, I was really upset after this encounter. (This reaction and others like it is one of the reasings why I want an official diagnosis now.) The last time I saw the first accepting friend again, I talked to him about this experience and wanted to get his input, after all, he had reacted so very differently. On the one hand, his answer was wonderful, he said, that, no, he absolutely believed me and saw quite a lot of traits and behaviours in me that fit the diagnosis. He thought it very likely, that I had a mild form of autism. And here it was. "A mild form of autism". I had actually always thought of it like that to myself. I understood why the autist community largely shunned such terms but it felt nicer, I suppose, to diagnose myself thus. But being called that by someone else, my struggles felt marginalised and that right after having felt so very, very well understood and SEEN a moment before... Well, I did not use these terms before, but now I'm also not thinking them anymore, either.
Thank you Dr Oyalo for healing my son from autism. And I want to share about him to every one
His herbs has made my son verbal and Improve in social skills
As someone whose family calls them high functioning, I needed this. Despite having neurodivergent relatives, people refuse to hear me out on this topic and they assume that I'm just ignorant. Or, at least, that's what I think it is. I'm considering using "high functioning ADHD" on my dad and sibling to show them how it feels. I tried explaining it to my mom and she just didn't understand, or really take it in. Here's hoping.
I think of the different “levels” of autism like the different trimesters of pregnancy. In the first trimester it is not obvious a woman is pregnant and some might not even know they are pregnant and don’t understand why they are so sick. Third trimester has a whole different set of symptoms. It’s also very obvious. Each pregnancy is different just like each autistic person is different. Also as someone in the third trimester, I would say the first was probably the worst! Even though it wasn’t obvious to others. Just like “level 1” autism can be just as difficult as “level 3” in some cases. (I personally am diagnosed as level 2 but people don’t believe me and just assume I’m Aspergers because my symptoms are not always obvious)
thanks, that analogy is really quite helpful and I'll use it to explain this in the future =3
Great analogy!
Thank you, that was very helpfull!
Excellent apology!
that is a great anolgy
The last 20 minutes of my life watching this video has CHANGED EVERYTHING I thought I knew about myself. I am in tears, and have never felt such a sense of love for myself now I understand. Sam, you genuinely changed a persons life for the better today. Thank you 🙏 😭💕
Thanks for the vid. I live in South of the United states. And you hit on a point about the lack of concern when expressing struggles. Usually it's laughed at Because of my monotone, dismissed because it's an inconvenience. Or if it's with depression I'm being ungrateful.
Thanks for this , Sam. My daughter would have been considered low functioning at 3 years, but now at 10 she usually looks neurotypical. The only difference is our knowledge, support, and lots of therapuetic help!!
may i ask: what kind of legal work/paperwork to be /should be put in place? my daughter (age 22) is currently getting assessed... i know there must be things we can do to be sure she gets support when we pass (we are older patents)
You do so much for our community and have helped me so much, so happy that your channel is growing because you are the best advocate for autistics on this platform 💖 love you so much
I think Paul from Aspergers from the Inside is also excellent.
'With love, support and stability, all autistic people can thrive'
The psychiatrist who evaluated me last year definitely wrote that I had mild autism. After talking with him so long and feeling like he was dismissing what I was saying I wasn't surprised but I was incredibly hurt and upset. He put Asperger's in brackets after writing it was mild.
He wrote that on the basis that I was at uni doing a master's which 2 months after seeing him I had to defer because of burnout 🙄
ETA: thank you so much for this video, I will be sharing with my family who don't know how to be around me anymore
I can understand that. I left college in the middle of my diploma exam project and very early in the morning so that noone could ask me why.
How did your burn out manifest?
Withdrawl?
Sleeping longer periods?
@@SpectreOZ I was mute for about 3 months immediately afterwards, couldn't concentrate at all, felt completely drained and couldn't sleep at all due to anxiety. I also felt emotionally numb.
@@zincwell6503 That is a long time to be off your game, what helped most with your recovery?
@@SpectreOZ time and solitude made me begin to feel more myself, then I was able to gradually do more of the things I love like reading- about a book a day of fiction, watching documentaries and eventually going back into more social situations again but with more awareness of what drains me and what I need to do to counteract it before I end up how I did during my master's.
I am all the way into my 40s and (since this past summer), I am self-diagnosed/self-identify as being autistic, and am currently on a waitlist for an official diagnosis with a GP (which is all but guaranteed after the "prescreening"). Your videos provide the words and intricate feelings that I cannot articulate (and sometimes wasn't even aware of myself), until I hear it come from you. I've watched a number of your videos and you'll say/describe/define something that almost has me fall off my bed. I'm almost to the point where I seek out a video so you can tell me how I'm feeling about "this/that/the other". (That's a joke, but not completely.) Further, I've now insisted that my fiancé watch your videos because it is much easier for me to show him what a lot of my experiences are like instead of trying to uselessly explain it to him in my own words (or lack thereof). This has led to us watching your videos together and comments/questions from him like, "do you ever feel this", "is that what it's like for you?", "I've seen that in you before", "I didn't consider how joking that everyone is autistic somehow robbed you of your experience, but I see it now". So, just, thank you, and please keep doing your thing because you are doing good no matter what the haters say. Have a great weekend.
Great good luck on getting the answers you need. It's worth it. It took me a while to be taken seriously initially, but it paid off eventually. I'm 58, and was assessed two years ago. The worst was getting the DWP to take notice and treat my condition and the C-PTSD on top of it seriously. Apart from the specialized areas in the health system, the hostile, bullish atmosphere that has been created makes for an extremely difficult, fraught time for anyone who is seen as atypical, usually perceived as 'workshy'. If they experienced the workload of masking ASC to appear what they regard as fitting in, it's possible they would have to reevaluate that opinion. Unless they've obliviated themselves first!
@@josefschiltz2192 - For years I have been complaining of fatigue and regularly I feel utterly spent. Beginning in my twenties, I had been going to my family doc (I'm in Canada) and saying, "something's not right; I don't seem to be doing this right; I'm having trouble understanding 'all the things.'" And every single time I left with a prescription for anti-depressants. I was also diagnosed with ADHD Combined-type, Bipolar Disorder II (which I promptly got a second opinion on and removed from my medical file), and finally my doctor told me that I just "can't handle life", and it wasn't my fault because I was what he called a, "hyper-sensitive". (I mean, if that doesn't clue someone in to ASD, would anything? What the heck is a "hyper-sensitive"?) I'm very relieved that you had your diagnosis done and confirmed. These intricate areas of the human condition (and dare I say, physiology) seem to be challenging to clinicians. I am glad it is finally getting more (and more) attention/research. Have you found that you're better off with your official diagnosis?
@@penniebarryofficial The pressure upon me to integrate into a 'normal' workplace has been relieved. Upon that - finally - happening, I've fell into a state of, so far, four months of rest in - not kidding either - an absolute complete exhaustion state. At least with my mother to look after, I knew and could predict what she needed. Once she went into care I was shattered but, crucially, not demoralized. The DWP made my state of fatigue far, far worse, undermining my physical and moral strength until I had meltdowns during the interviews. THEN they started taking notice of what I was telling them! A pity they had got me into such a state before they realized that I knew what I was talking about. The four assessment interviews for the Asperger's were spaced not too far apart thank goodness, the last one being myself and the assessor going over the print to see if everything was in order. I still have no idea how much of my strength I can return. I used to be very fit. I now feel like 58, going on 98! They've allowed me a decent amount per month to live on, formerly it was extremely low. They didn't seem to understand the nutritive needs increase if you are debilitated, I can't fathom what planet they're living on if they think that pittance is going to do anything but zombify someone who is trying their best to recuperate and they expect you to do a full work search at the same time! Note to DWP. BTW. Raised cortisol levels due to stress intrinsically disrupt learning and memory capabilities. I would ask them, is stressing up someone with Asperger's Syndrome, who has high anxiety built in as part of the condition, going to respond with anything but a mental crash? Common sense would say no! Will they be able, therefore, to attend multiple interviews and learn new skills, interrelate with new people, travel to new, unfamiliar towns and cities? Answer. NO. Question has to be, are they obdurately thick idiots? That's my rant over, just in case they are watching. Answers on a postcard.
@@penniebarryofficial Ah yes. I had my first nervous breakdown when I was around 25, but the nervous issues kicked off way before then. I can date my first hospital visit due to a panic attack on the 15th May 2002. Appropriately, there was a thunderstorm brewing at the same time as I sat on a kerb and wept! Fortunately, a very nice elderly man stopped, got out of his car and stayed with me until an ambulance arrived. Turned out that he was ex-military and said to the paramedic that he'd seen plenty of panic attacks in his time. I've never forgotten his kindness there.
@@josefschiltz2192 - I am so happy someone showed you some kindness and treated you with dignity in that terrible moment. I've only ever had one panic attack in my life and I had no idea what was happening because - as you well know - I had no control over what was happening. I remember being upset and scared and then my body just started reacting in its own way. Fortunately, it happened right at the doctor's office, so I was in a good place. Your story is very inspired and somewhat harrowing. It can seem impossible to get medical professionals to take "you" seriously, but your persistence and grit got you through to the end. I'm really glad that things have turned out better for you in the end. It's not perfect, I know, but "better than it was" is better than nothing. We shall keep fighting, yes? How about I send another message on this thread in the early spring when I get my assessment and I can let you know how it turns out for me. I wish you all the very best, and have enjoyed sharing with you. Thank you for being open and trusting me and "us" (as anyone can read this) with your story. You are brave and wonderful.
I am going through a tramamtic event in my life I have PTSD and being diagnosed with Aspergers come at a bad time. It is one scarey rollorcoaster you don't want to be on. Who am I? Where has the normal person gone? I find you content helps me but I am still at a loss. Oh I wish I was a strong as you you are brilliant star willing to share openly your love with other autistics. Keep the light shining you really are a top girl with a shine happy star! 😊🌟🌟
Keep going and working through your trauma. I was not always strong enough to talk about my experiences. It has taken a long time (and therapy) to get me to a good point in my life.
@@YoSamdySam Thank you for you reply, you don't know how much this means to me knowing there is someone like you in the world who understands. You have brighten a little part of my day up today. Thank you Sam you my 🌟🤗
The grieving process after diagnosis is normal as you are sad for what your life could have been if you had known sooner. I cried for three years and dumped my so called "best friend" who didn't seem to care that I was upset and would rather spend all of her time with her boyfriend. When you are at these low moments you usually are all alone unfortunelty as humans are fickle and shallow and heartless.
Yes! So much this! I appreciate the distinction between having a safe, secure home and not because I come from an abusive home and I feel like I was forced to hide a lot of my symptoms and when I wasn't able to, I was abused for having them. I am now 30 years old and I am beginning to accept that I am odd because I have autism and not because there is something wrong with me.
Thank you for making your videos, I hit major burnout because I've been struggling with the social atmosphere at my work as the number of people I've been interacting with has increased rapidly over the last few months. I related strongly with your reported experience and started to look into autism more, took tests a few times over about a week and got very high scores, so I decided to get evaluated so that I might obtain the ultimate knowledge. I ended up being diagnosed yesterday at age 30. From epiphany to diagnosis was about 2 weeks, with about 6 hours of evaluation over two appointments. By the time I called to make the appointment I was certain. I guess things move fast here, and I'm really happy about that! I'm glad I learned this because understanding my life better and having access to language to describe my experience when I might not be communicating very well seems like a huge win. I like to call things like this a life level up, and I look at me go I leveled up and gained a new ability! I've only told a few people so far, and every one of them has been like 'hmm it must be very mild' and I just think if only you could hear my brain go eeeeeeeeeeee
Loved how you made the connection to privilege.
"it's not a competition. We can all function in this space."
Perfectly said.
I have an IQ of 147 and identify as an “aspie” despite the DSM-V. My IQ is considered high functioning but I have such a poor sense of direction that I sometimes get “lost” trying to find the restroom in a new place. One time I got lost in the doctors office after going to the restroom and had to ask the nurse where my room was. Keep in mind that my clinical IQ is only 13 points lower than that of Einstein’s and I’m getting lost in the doctors office...
my daughter is the same and cannot tell left from right or which shoe goes on which foot.
My son, born in 1988, had me to help. He was a select mute at school, and, by extension, the school bus. He was invited to his first birthday party at 12, I cried. He received some cognitive behaviour therapy at 15, was diagnosed at 18. He came with my other son and me to almost everything. He had no social skills, but he learned enough to mask very well by the time he was 33 to get a job. He is happy enough, has no friends, but he is close to his brother. I got my first, not quite hug but his arms were around me just not touching me, when he was 31. I did not cry until after he left. He is the bravest person I know. I only called him by his name, stood up to the school officials for him. He is very intelligent too.
I just wanted to say thank you so much for your account and speaking openly about this. I've long suspected that my boyfriend who was born in the 1980's has undiagnosed autism. I noticed it more when we started living together and he became more comfortable with 'letting the mask slip' so to speak. I have a masters in psych and work with autistic children, but it was still a challenge to come to terms with his condition and how it affects our life and relationship. Unfortunately we live in the US, and we don't have a financial means to seek a proper diagnosis. But my Master's degree has meant I can properly administer the assessments, and professionally speaking I would classify him as autistic. He has accepted this and it was clear from the first moment I told him that it's something that 'just makes sense'. Can you do a video about adults seeking treatment/therapies and what that has meant for you? Or even addressing some of the reticence autistic individuals have with trying something new? My boyfriend trusts me, but he is very hesitant to seek professional treatment (even if we had the means) and does not want to try therapy as he sees it as "It will change him". Even if I try to do the therapeutic techniques he thinks I'm "trying to change him". How do I make him see that I love him for who he is, but I think going to therapy would be of great benefit to treating his depression and overall improving his life? Thanks! Also your an awesome Mom!
Thank you. I was diagnosed when I was 33 shortly after my son, who was 3 at the time was diagnosed. As such I know what it is to be an adult Autistic person and what it is to be a parent of an Autistic person and I see the challenges that come when people do not accept that I am Autistic and also what happens when people do not assume competence for my son because they think him being Autistic is always a barrier. High Functioning and Low Functioning are ways to box people in, in a manner that is not congruent with the experiences we actually have. Anyway thank you for making this video and for your youtube channel as a whole, it really is a kindness I appreciate.
Hi my name is Sam and I’m 47 and was just diagnosed with Autism a few months ago my daughter who is now 22 was diagnosed about a year ago and my son who is now 23 was diagnosed at the age of 17. It’s so interesting how so many doctors through out our lives got it wrong and still to this day people and family are denying it. They think it’s something else but what’s even funnier is they can’t say what that something else is. One relative says it’s impossible as my my son and my daughter are very affectionate. Lol they have no clue. Love your videos keep them coming.
More that my language was really advanced and developed early and that it was a real strength. For me the issues are visual spatial with maps, complex mathematics, proprioceptor issues, differences in detecting heat, cold and pain, previously clumsy coordination, executive function issues with planning and time management. Some sensory sensitivities to light, sound and smell and low energy levels.
Dancestar1981 when you say you were “previously clumsy,” did it improve on its own or through intervention? I’m curious, since I am still very clumsy.
The communication issues were more with being able to describe emotions effectively I’ve discovered the creative arts to be an effective way to express them. In the beginning it was really hard reading body language too, it’s slowly getting easier
Dancestar1981 we have so much common ground, especially the advanced early language versus terrible visual spatial and executive function, light and sound sensitivity, and absolutely no grasp of complex maths, which I just find nonsensical yet others get it straight away. Until I found this little community I thought it was just me lol
I also had great language development i knew more words than others and despite being dutch i could understand english without issue when i was 5 despite it being my 2nd language.. where at math i fail miserably as it just won’t work the way it does in the case of with others.. i’m horrible with cold where as i am horrid at heat as i will still feel cold when it’s 40c out.. for pain i often don’t notice i am hurt till i see the blood and even then it often won’t start hurting till i clean it. I’m ridiculously clumsy to a point where a friend of mine is so desensithyzed by me dropping everything in my room during voicechat that he usually just goes : did you drop your deodorant again? I also smack against everything getting myself hurt in the strangest ways because of it i can’t start anything without a push.. ridiculous sensitivity to light (i often sit in my dark room) sound especially is a horrible thing for me.. i will get annoyed by electronics.. like the fact my moms phone charger buzzes when charging her phone.. my computer mouse making beeping sounds when registering movements smell i also have but it’s not as bad at the moment due to my dust mite allergy..
dyscalculiea
I was diagnosed with Asperger's/pdd-nos when I was re-confirmed with my ADHD diagnosis, and I told my manager at work (it's just the two of us who work in the showroom so I really don't care if she knows). She admitted just today I think that she doesn't necessarily believe that I have itbecause I guess I don't have some of the "symptoms & traits" she possibly believes that people should have? I know he said her great-grandson was diagnosed it and I think she said another member of her family was as well, I guess that's what she is comparing me to (I should probably mention she's also 72/73). It's like gee thanks but I've done my research and taking some of the test and a skilled clinician says yes, I do have it. Just because you may not see it, it's different than how your family presents it doesn't mean I don't have it. God that pissed me off when she said that.
Fantastic video! When I was first approached about it at all, it was suggested I might have "a touch of Asperger's" haha. I do appreciate clarifying that levels and functioning labels are not the same thing and that one is supposed to accompany the diagnosis officially and the other was never official. I wish I could put things as eloquently as you! I always end up rambling off into the middle of nowhere 😂
I’m so glad that I came across a fellow autistic. I use to be ridiculed for mine when I was a kid. Some people use to call me stupid due to my age in my grade level. I was only held back because I had a 10 word vocabulary at age 5. Heck, even a medical doctor believed I wouldn’t graduate high school without a special ed degree. A lot of people wouldn’t even know I’m autistic unless they see me have a meltdown or a shutdown. Fortunately, I used my autism as a gift instead of a curse. I graduated at the top 50 of my class and I do plenty of research in my spare time. I even try to set others on the right path in life, but most don’t listen.
Loved this!!!!
My daughter was just diagnosed at 12 years old and is a level 1.
I've been supporting her (without realizing it) since she was born. Like you we've been in the same house since she was born and she goes to a small school (43 kids from Pre-K to 8th). It's only because I requested for testing to be done that it was caught at all. Thank you for explaining this so clearly!!!! Environment DEFINITELY is a factor in how ANYONE deals with stuff!
I was diagnosed with Aspergers and still refer to myself as an Aspie
What about Asparagus ?
The insight concerning your upbringing was so helpful. The concept of a happy autistic person is incredibly important. I think that was the most impactful thing you said. I look forward to my recently diagnosed brother watching this. I believe it will bring him hope, understanding, and leases shame. Thank you so much for opening up and sharing these deeply personal details. They are immensely helpful. You are amazing.
I started watching these videos, mostly because we suspect my son is autistic. The more I watch these videos the more I'm certain that I'm possibly autistic too. I always thought my issues were due to the trauma and abuse I suffered during childhood and the fact that we were poor. We have autism in my family with my brothers and cousins been diagnosed.
Thank you for setting the record straight and informing us about what autism is and isn't.
EDIT Update: My son got diagnosed with Autism (level 1) and ADHD inattentive type (level 2). He also has several speechimpediments and the psychologists wanted to label him as "unable to understand and learn" when he just couldn't express and use words normally. His speech therapists says he's high above kids his age when it comes to language, be it understanding concepts, grammar or learning. He's 7 and uses and understands sarcasm, speaks three languages and loves to learn new things. Also, I got an appointment for an autism assesment after fighting for it. Being the well adjusted "high functioning" type I can't possibly be autistic bs is what I got from everyone. I'm just scared that I won't get the diagnosis since I have both autism and ADHD innatentive type, and they cancel each other out.
This is exactly what I just mentioned to someone about comparing peoples' skills/abilities as being detrimental. It degrades one side, as well as feeds the ego of the other. Both points are NOT good. Thank you for the video.
Thank you for making this video. My diagnosis literally says “mild autism”. And a lot of people told me before I couldn`t possibly be autistic, because I am “too high functioning”. And I get why nt people make these functioning labels. My aunt is also on in the autism spectrum and she can barley speak and can`t live on her own. Of course there is a huge difference between her and me.
"I'm not a psychopath! I'm a High-functioning sociopath!" -Sherlock
;-)
What makes that line even better is that sociopath isn't even a clinical term lol
I knew a couple who’s son has autism. They had to fight like crazy to get services for him. But they have succeeded. Mom is an RN, Dad is a teacher…and at one point getting help for him almost broke them financially. They had a pretty nice house, and they decided to find one that needed a lot of work, and go that route. By doing this, they lowered their debt, got services their son needed-and he has done beautifully. He’s gone from “ low functioning” to “higher functioning”. Which means he went from lots of non-verbal, stimming frequently, etc, to where he interacts with his family beautifully and strangers don’t scare him. I haven’t seen him for the past six years, I anticipate that he is doing pretty good. His parents were really so dedicated to getting him help he needed to thrive.
As a level 1 with adhd, I still am glad when my wife is willing to make all the phone calls, handle the bill payments, and occasionally do all the talking when we are out in public. I can do anything, and I would probably be alright living alone, but these little things do wonders for my general level of stress.
Thank you so much! I'm sending this to everyone I know. You did such an eloquent job of describing this.
Thank You for bringing this to the attention of the community. The function labels are being used still by private agencies and government grants/programs here in Upstate New York. Prevents access to services to prevent problems from occurring for those that have less communication barriers and medical needs to be met. Just because some individuals can communicate better than others does not mean that "all that glitters is gold". Because I have communication fluent in more areas I use those skills to communicate, serve and protect those in my community. Elites want us separate so we cannot enact our power of holding them accountable for their crimes against humanity. No criticism from this sista!! Thank you for speaking the TRUTH.
I had no idea they were being used on an official level - that's awful.
Thank you Sam for this excellent coverage of this subject. It is a great comfort for me, a 56 year old woman who wasn't seen as a child and had to brave every phase alone, to abusive marriages and raising 5 unplanned children alone. But you covered this sensitive subject really well. Alison Smorfitt.
I just want to thank you for making and running this channel - my wife watches it all the time, and it has helped her immensely with identifying and learning ways to live and thrive as a person.
This video is also especially important to me - I'm also autistic, but I have such a low number of issues (largely thanks to early diagnosis, therapy, and a very loving and understanding family) with getting through life it's almost *too* easy for people to not even notice - to the point where I doubt it myself at times - until I catch myself stimming or incapable of connecting with someone else's or even my own emotions.
I worry constantly that my low-level struggles aren't worth consideration - and it's very comforting to hear that they are indeed worth considering, and that it doesn't diminish other people's needs either.
My therapist told me I cant call myself autistic because I'm on the lower end of the spectrum, needless to say I'm not going back to her
Therapists are so annoying sometimes
.... looking out the window daydreaming hearing only the sound of everything that was said ..... to recall what was said later
I LOVE this video. Thank you so much for posting it. I am one of those people who looks like a level one but who is actually a level three and it is a nightmare that people can't understand this and put expectations on me that are impossible for me to meet all the time. And I feel like that pressure is killing me.
I love that you explained it in terms of support needs. I can get through life if I absolutely drag myself through the hell of it and secretly have breakdowns and shutdowns, because I felt it was wrong to need support and that I was a failure as an adult if I did need support, but this video has helped change my perspective on that hopefully I'll be a little more kind to myself going forward. Thank you
In Germany we still code with the ICD-10, so we still use the term Asperger. That will probably change in 2022 with the ICD-11.... Great Video, thank you so much
Tina Müller same in denmark. Our Girl just started her tests and she should be diagnosed after the new list.
As always, very well prepared. Good points, excellent reasoning, good illustrations and explanations. Great one! Thank you!
Yo Samdy Sam, thank you for taking the time to make these videos, giving visibility to women with autism and promoting understanding and openness to all others on the autism spectrum. It has been very reassuring to see that there are so many other people out there who can relate. Thanks for sending out good vibes ~
You said it so well as to why I hate functioning labels. It gets more complicated when you have people who actually want to be social (me) but don’t know how to navigate social expectations or conversations. So I don’t “look autistic.” But I have clear meltdowns...and struggle now as an adult
I've never held a job longer than a year. Went to a special high school. Never went to post secondary school for more than a year. I wouldn't call that high functioning. Lol. Excellent video.
THANK YOU ❤️ You have the great talent of saying things just like they have to be said!
I struggle to voice myself, so I use your video to communicate my thoughts and feelings! Thank you so much!
Hi Sam, happy birthday, and thanks. I'm 71 and I was only diagnosed 2 years ago. It immediately explained my whole life: the inexplicable failures (I have an extremely high IQ), the strange behaviours, my 'gifts', etc. For example, I wondered all my life: 'How come relationships are so difficult, when I am so good at "figuring out" what to do in social situations?' (Auties will understand) I have carefully selected a few people close to me to confide in; and most have responded (sometimes angrily) that I am not. New diagnosees, be careful who you tell, because they're not listening to your voice, but to THEIR voice. Over and out.
I actually really enjoy the information you are sharing on here! I am learning so much. I work with a client who is a job coach for those with autism and ADHD - I help her with social media. So this really helps me understand what kind of content to produce. ☺️
Thanks for this video. I dont have a autism diagnosis yet but struggle with severe depression and one thought that I have over and over again is, that I'm not functioning like I should, like society wants me to, that I'm broken and need to be fixed. And I feel that way since I was 13 or 15 (so more then half of my life... before that I only thought I'm strange, different, weird, but not "broken")
So these label is hurting people even if they dont get it "official" because what is functioning at all? And its so difficult to get help and support. Most of the time Im to afraid to call someone but when I ask my family for help (most of the time my mum, she only would answer "your an adult, you can do this alone" or when I ask if she can come with me to an appointment because I'm afraid (paniced!) to go alone I get the same answer... Yes I can force myself to do it alone, but it needs so much more energy that Im exhausted for the next 2 days... but most of the time I wont ask, because I dont want to be broken, dont want anyone to see that Im not functioning like an "proper adult" should.
WindspielArt I relate completely. I only recently came to terms with being autistic (just last year), and I’m in college now. I’ve been depressed since I was 14 years old, and I have difficulties with basic tasks like brushing my teeth. The idea of going to classes and doing my homework is so overwhelming I want to burst into tears. I love learning and personally believe I am very intelligent, so when I tell people that I’m taking the semester off (to hopefully better collect myself and work on my executive functioning skills), everyone is shocked because they think I’m smart and should therefore have no problems with my school work. It’s so refreshing to talk to people online who identify as “high-functioning” autistic and that make me realize I’m not insane or lazy for struggling the way I do. We’re not broken. Good luck, my friend.
@@allisonhardin1159 No, we are not broken, just different. School, college, university can be tough, just because of the people. I hated classrooms and therefore almost never attended lectures, not at highschool and not at the university. I was diagnosed to be an Aspie. I do have my struggles too (it gets worse when I'm stressed), but people wouldn't think that I'm autistic. They just think that I'm weird from time to time...I found it particularly hard to learn social interaction (no support at all) and to figure out how to respond to the so called unwritten rules. In an early stage I defined for myself how to react rather than copying other people. So, often I don't fit in the NT society and I don't care. I can stay true to.myself and I don't use energy to pretend to be someone else. It may be harder for us, but we are very well capable of making our way through life. Wish you much strength. By the way, I don't envy NT people. They sometimes behave very weird. I'm autistic and it's fine.
U are so good at this! Very important video, never seen a video about functioning labels before. I wish I could send this to all my super involved supportive interested friends and family... hummmm🙄.
Haha does anyone else know the feeling of wishing u could force people to watch something, or to get involved in one of your interests😂
The way you describe having unrecognised support that when it disapears makes the autism show outwardly is something I recognise so well. Before I moved out from my parents the issues with keeping on tasks (adhd), avoiding grocery shopping (sensoty issues) etc etc was compensated for by other family members. As I moved out not only did I lose all my rutines I lost a huge part of my support. I still got some support from my parents with grocery shopping, especially during covid, but as lost my father that also disapeared. I think if they were doing the assesments now it would show far more than it did when I had it.
Been binging your videos, old and new, thank you for making these. I'm learning, not only about autism, but about how important understanding autism is for understanding me. Again, thank you.
I've tended to use the high functioning label to describe myself only because I tend to get a lot of people who tell me I don't seem autistic and it drives me nuts. I've spent years perfecting my mask and while I actually hate using it I spent so long being bullied and mistreated by people around me that I created the perfect persona that made people like me.
I'm in the process of getting back into therapy but in the meantime your videos have been a source of comfort and have made me so happy. It's incredibly reassuring and refreshing to be able to listen to someone talk and have similar experiences. It's like a weight has been lifted off me that I didn't even realize was there. So I have to say thank you so much for making these videos! You're amazing! I even showed them to my dad who is also probably on the spectrum but hasn't been diagnosed.
I was never given a ‘level’ with my diagnosis. I was just handed a report, with a covering letter stating that I had ‘met the diagnostic criteria for a diagnosis of autism’. No mention of functioning or Aspergers, for that matter.
Patsy Collyer From I what I hear levels from Tony Attwood talks his Clinic autism spectrum disorder level 1 in Australia.
In the UK they don't put levels on diagnoses paper, becoming autism, shown her diagnoses paper it just said.
Autism spectrum disorder and anxiety.
But the majority autism youtuber would be level 1 if they did do levels on the diagnoses paper.
Im a level two. I have to say Im a level 2 in Canada and often British HFA people seem to be Even more "high functioning " to me and I find it hard to relate.
Thank you. I cannot tell you how much I have gained from watching your video's. I've a recently diagnosed 4 year daughter with "high functioning ASD" the paediatricians words not mine, and I'm lost at the moment. Listening to you calm, assures, informs and even makes me giggle at times. You are an example of how embracing and supporting my daughters needs will bring about a happier and calmer little person and adult xx
This is a great video! I am in the process of writing a book about my own experiences with autism and I wrote a chapter about this topic. Many autistic people, including myself, don't like functioning labels for many reasons and think they're harmful instead of helpful. I was diagnosed at age 4 (with Asperger's...I hate that term now because of what Hans Asperger did, so I just call myself autistic now, though that's not much of a change since I've always called myself autistic since Asperger's was always part of the spectrum) and have always been considered "high-functioning" but when I was trying to understand myself, my therapist and everyone around me was key in helping with that. With everyone's help, including a look through my therapist's copy of the DSM 5, we have determined that I meet more of the Level 2 criteria rather than Level 1. I don't want to start going on a tangent now so I'll end this comment with a final statement. The way I like to describe functioning labels is this: They are the result of the neurotypicals being stuck in the black-and-white mentality while the autistic people can see the gray area for once instead of the other way around.
I understand both sides of this argument.
Personally I was diagnosed with Asperger's at 14 in 2008, and I still use it, but I also use "autistic", and "high-functioning autism".
The reason I use Aspie and high-functioning is just because I am trying to communicate that I am intelligent, can live daily life alone, do not need supervision. Hell, I even have a firearms license in Canada, allowing me to legally buy and use guns and ammunition. I also have a full driver's license, etc.
I think that there does need to be some way do differentiate people like myself, and yourself, etc from the people who need supervision, cannot do daily things alone, or are not of even average intelligence, etc.
I basically just don't want people to think I am mentally challenged or "retarded" because I am autistic.
intriguing discussion. i think the labels came about for good or well-=meaning reasons. there are some autistic people who can function better in society. and some do need more support than others do. low-functioning and high-functioning used to be medical labels. but i agree that it's not always helpful.
Happy 2020 Sam! Thanks for the video. I feel you represented us very well. I'll be sharing this video with friends.
I just found your channel and oh boy am I glad I did! It's amazing how a video that so many might take for granite can be so meaningful. Thank you
15:59 Funny that, as I'm the reverse situation. I feel like my issues went unnoticed because I was in a poor working class background, went to schools that didn't really give a shit about the pupils welling being, and my parents had issues with drink and drugs because they were also unrecognised! They didn't think I was out of the ordinary because I was just like them! My school's didn't pick up on anything, because they didn't care! 🤷🏻♀️😅
P.S. Yes, 30+ students was a nightmare!
I live in California I am going to start a new TH-cam channel about Autism. Wear cute Autism shirts. Who does your editing?
I do my editing
Yo Samdy Sam How do you get your voice to go squeaky and fast during some of your videos?
I speed it up 😜
I am not sure you will see this but I have changed my TH-cam name and channel just in case you are wondering.
Great video! Very informative. I have terrible doctors so I’m not sure if I’ve been diagnosed properly yet. (I’ve been possibly misdiagnosed with bipolar.) Starting to see possibly of having autism based on what ive heard from your videos and other videos. So I’ve asked people before why they keep telling me I dont have a mental illness that bad and they say, “they say that to ease your concern. To make you feel better and feel comforted knowing that you dont have it as bad.” But I 100% agree with you. Its diminishes our real struggle. Whether it looks “mild” or “severe” we still struggle with it every day and it can be tiring.
Thank you so much for this. You are so eloquent, it's a delight listening to you. The part where you discuss autism and trauma really got me and I'm in tears because not only are many autistics traumatised, the impact of trauma is very damaging bc of sensitivity and bc we aren't understood. I believe lots of autistics have problems grounding into their body, which increases all symptoms. Btw I think the Norwegian artist Aurora is on the spectrum. . .And lots of others who had support who then shine so bright. Like you too. Thanks for sharing.
Aspergers Syndrome does still exist. The diagnostic was just updated. ASD presents in about 5-6 different ways so its no longer diagnosed as aspergers syndrome but ASD level 1 👍😁
When learning Hans Aspergers connection as a NAZI doctor I felt sick! Definately don't want my son under that. 😵
Good video and explanation💓👍
Sorry but, more severe autism is not just autism in addition to a co-morbid condition. I think this is a misunderstanding of how autism works. Autism isn't just one disorder, it's more like a collection of diverse traits caused by various genetic and environmental factors which all happen to be grouped under the same umbrella. You say you don't want to deny that people with severe autism are different, but whether you realize it or not, that is what you are doing. It's what pretty much everyone who argues against functioning labels is doing. Cognitive impairment can come with autism. My sister, for example, has a rare genetic condition that causes cognitive impairment, autism, and various physical issues. Those aren't a bunch of co-morbidities, they are all issues that come from the same source.
I have a diagnosis of Aspergers. I do think the labels "high functioning" and "low functioning" are kind of problematic and I understand the impulse to avoid them. It can be difficult to classify people correctly so it might be the most wise to avoid labeling people with these classifications. There is no reason for me to go around calling myself "high functioning." It would sound kind of pompous and it would confuse people more than clarify my issues. However, just because you avoid using the labels, it does not mean all autism is the same. If I decided to stop using the word midget, it wouldn't mean that short people and tall people stop existing.
Autism advocates on the internet are almost always verbally intelligent people who are capable of living independent lives. I think the autism movement forgets that not everyone is like this.
I wish I could express how important it was for me to listen to everything you say in this video. It's a game-changer. Thank you deeply!
So much information. So many positive takeaways from this. The one that really hit me, that I have not gotten anywhere else, was the whole "functioning in life due to support systems". This hit me hard. I have a very organized, neurotypical mom who handled everything. The whole being a kid when all needs are met, vs. getting through life as an adult. The energy needed to function can be exhausting.
High functioning, low functioning, Level 1, 2 or 3 ... are all meaningless terms by neurotypical people to try and describe the variations in autism and support needed. And they all fail as that is only how individuals with Autism appear to the individual giving the label.
IQ is not related to Autism. Period. People with autism and low IQ may or may not be more severely affected by their Autism as someone with a High IQ. In reality this usually indicates or hides other neurological disabilities that are not part of having Autism in any way shape or form. While it is true that easier to detect Autism in people that clearly have other issues, that in no way means their autism is more or less severe, but instead indicates that for neurotypical people it is harder for them to Identify someone that has a more normal IQ as having Autism.
I finally started getting correct diagnosis on what was going on with me last year at the age of 53. Yet I knew for a long time that I had Autism. Like many, I presumed that being high functioning meant I had mild autism. BULL. This was entirely due to the lack of good information out there and not my reality. But I had been lulled into believing it based of what little I could find out at the time. The truth is I had exactly the same difficulties then as now, only now my understanding of Autism is so much better I can see the cracks in the labels for what they are.
Knowing something because of my intelligence and being able to preform that task are not the same thing for people with Autism (and many other disorders). Sure, I can do the math to balance a checkbook in my head and rarely make a error. I will never be able to balance a checkbook by myself. The first is IQ, the second is Autism. For Neurotypical people observing us this makes no sense hence the labels. But for someone with Autism, this is not at all unusual and only those that go through it really get why. No matter how much effort we put into trying to explain the difference a Neurotypical person will never really understand.
Then we get into the misinformation about Autism. Much of which is currently mainstreamed even within the Autism community because the modern rejection of science as a whole. This information (like retro-autism or the anti-vaxxers claiming that causes autism) not only is inaccurate it makes it much harder to help those that do have autism because they get caught up in believing this misinformation as being fact. In reality, Autism is a neurological disorder, so the age it becomes apparent varies with the development of the brain as a whole. Meaning some children appear "normal" until between the ages of 4 and 7 while others clearly have problems earlier on. Like the statements on intelligence above, the difference has nothing to do with Autism but only with the perception of the observers. When connected with other disorders it is easy to spot in a younger child. When hidden behind a higher IQ it simply doesn't get diagnosed as early in most cases. Yet even on Autistic discussion groups the amount of misinformation on this is staggering.
I currently have a "lvl 2" diagnosis. Because I "need" more support then others. In reality this is also BS, my support needs are minimal but my tolerance for society, it's ignorance, misinformation, and outright cruelty has gone away with a lifetime of seeing neurotypical people mistreat others for being different. For their refusal to wake up to the lies and misinformation being spread by those with opinions not backed up by fact. And by the racism and bias displayed against anyone that isn't "normal like me". I am lvl 2, because now I no longer care to listen to these individuals and will take them head on for being the disgusting and horrible way they treat others that are different, for the ignorance behind their bias, and for the principle that we as a society can no longer tolerate this type of discrimination just because they don't look, act, think, feel, or talk the same as the next person. I have no tolerance left for hate.
In the US, "high functioning" means a normal or above IQ. It has nothing to do with how well a person navigates the neurotypical world. It has nothing to do with whether a person can speak or anything else.
This video was amazing 👏 I love how you put your perspective, as a parent of a child with autism, this honestly made me feel better about his recent diagnosis, I'm doing everything I can to learn about it and knowing how you feel and view some things especially the "levels" really put a good perspective on everything. Thank you!!!
Hi, I just wanted to let you know how much I love your videos. I am do not have autism but I do have dyspraxia which has a lot of the symptoms that autism has (it's different for everybody but it is like that for me). Most people don't even know what dyspraxia is (not even most of my teachers), and there aren't too many videos on it either. So I like watching your videos because I can relate to so many of them and I don't feel so alone. Being a 17 year old is hard enough without having dyspraxia, so your videos make my day just a little better.
Love this, it has helped clarify this issue for me! And on a completely unrelated note, I love that shirt you're wearing!
I really love this video. When I tell people that although I have no official diagnosis, I present with a lot of things that seem to line up with many of the diagnosis criteria for ASD, they all say "But you don't seem autistic", or "you don't seem to struggle socially". But even my husband didn't quite realize how many ways I cope in my daily life with things that most people don't struggle with until after we got married. And after we got married, he really started to notice how many things I avoid in my life to save myself from meltdowns or from having certain social interactions. But it gets very frustrating when everyone says "you seem fine".
chocoham1 "Your very good at picking up social sues" another person might say to you.
It's learnt skill that doesn't come naturally to aspie/autistic people.
@@garyfrancis5015 It's very frustrating to hear that as well and it's something I've been told often. But it's difficult to explain in the right words how I have always felt 3 steps behind everyone else socially. When people make jokes and I don't understand that they are joking. How I focus on details of people's faces when I'm talking to them so I don't have to make eye contact, but also don't have to tell them that I don't want to look them in the eyes. How I avoid going to the doctor and making phone calls and even going into grocery stores, especially if they are unfamiliar to me so I don't have to talk to anyone and ask for directions to something I need and I don't have to spend much time in a busy store. And how I don't know how to avoid people outside of stores who stand on the corner and try to get you to donate to charity or buy something from them. How things that seem like not a big deal to almost everyone else are big big deals to me and scare me all the time.
Thank you for your channel. I really needed to hear what you had to say. I’m 60 y/o and just wrapping my head around being autistic and it seems most everyone knew but me. I could use a support group I’m overwhelmed
I do believe this is the 1 video I will share with my extended family to let them know what my diagnosis is truly like, many thanks