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.
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!
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.
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*
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.
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.
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 UA-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.
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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.
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 🙏 😭💕
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.
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!
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.
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.
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
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.
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 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.
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.
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 ~
Thanks for this video. I'm at an interesting point in my life where I'm heading down a slippery slope of reduced ability to function, as a result of living in an unsupportive context. Being married with children and having only been diagnosed (provisionally) in 2020, I'm still expected to maintain a veneer of competence, in the face of feeling like a failure as a husband and dad. I really enjoy watching these videos, as it helps to discover that there are so many others who experience similar challenges to me. I just need to work out how to employ this knowledge such that I can reduce the meltdowns and burnout! I'd love to just be me, rather than struggling to be "high-functioning".
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.
as a self diagnosed 37 year old cis woman arguing about functioning labels on fb, watching this video helped me to feel seen. thank you. so much for not neglecting the factor privilege plays in the autistic or non autistic human's ability to function in society.
Watching your videos is like taking a trip through my own brain. I appreciate them so much. I’m now figuring out in my 40s that I’m autistic. On an unrelated note, you remind me a bit of Jennifer Saunders.
Thank you for this video, I am what others would consider high functioning because I have a full-time job, but what people don’t know is that I had a period of time where I was housebound and needed support to be able to leave my house, and with treatment I eventually became somewhat independent. It is a daily struggle just to get myself to work and that is invisible to people. The only person who noticed is my friend whom I consider family that I am on the spectrum, cause he himself is autistic and works with disabled children, that was a huge moment for me cause before him no one believed me.
Sam. I know this video is more than a couple of years old. But you essentially put most all my daily struggles in this video. I've never been good at explaining my daily struggles but what you have covered here is probably as close as I've heard , so far. I was born in 1957 after my mother had carried me for 11 & 1/2 months. Born with no discernable iron at all in my blood , and unable , until 6 months old to receive any blood transfusions. Iron facilitates the completion of the neuro connections in an infants brain shortly after birth. I wasn't diagnosed until I was 61 or 62, not sure exactly. Bullied all through my school years and have daily struggles with everything you've mentioned here. I have no support system, at all and some years ago I basically told the VA psych department to take a hike. I was done with them experimenting on me. So I live with my depression, anxiety and all the other wonderful things we Aspie's deal with. Looking for the day when this is all, finally over. I don't trust therapists or shrinks and will not take another one of their pills so all those feeling sympathy and concern, please, do not suggest it.
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.
I used to say I'm Aspie. According to DSM-V I'm not autistic because I don't require support. Today I don't say anything. I have no need to debate what label to use. I don't see a label being useful. Plus I found a cure having lived as a hermit for almost 3 years now. I'm 64 years old. Being a hermit has been so nice. Zero stress, haven't even been close to having a meltdown. It's been strange because I feel completely normal. So normal that a couple times I thought I could easily interact again and gave it a try...epic fail, back to hermit which is find. The fail is partly others not liking what I say but mostly I don't really like interacting. It's boring and I have to go right back to masking (meaning validating other people's fantasy worlds). I'd rather be in my garden, working on my house, on a walk or writing software. One interesting thing about being a hermit is terms become useless. Even my name has become rather meaningless. Imagine being the last person on Earth, what does it matter what the name of a plant? You only need to understand the pant. It seemed to be the online world is obsessed with naming things, grouping everything, and trying to tweak terms to have the coolest sounding term.
2022. Thank you! Trying to figure out if I have autism or not at 58 years old. I am sure there are many who are also older and looking for answers. Good luck to everyone who are exploring autism like me for the first time. ❤
Thank you, I have shared your video because your explanation of Autism is excellent. I was diagnosed with Asperger's Syndrome at the age of 60 and the two Psychiatrists told me, when they gave me my diagnosis there was nothing they could do for me because I am too intelligent and have worked out strategies to deal with difficult situations. They didn't see me having to psyche myself up to go to business meetings or Networking meetings. The diagnosis did explain why some people find me rude and aggressive, I prefer direct and assertive. You seem to have grasped your diagnosis and run with it. I just filed my in a desk drawer. I joined various Asperger's groups on Facebook but most of the people there seem to have much greater struggles then me. I have worked since I was 16, I have 3 times as many letters after my name than in it and am now working on retirement, failing. Still a Director of 6 companies and Treasurer of a Charity. Sorry for dumping on you but you are saying a lot of things that resonate with me. Please delete this if it's inappropriate. Best Regards Edward
My psych explained that I should think of mild, moderate etc. labels as more of a determining criteria than a description, mild is just a few symptom boxes ticked, moderate is a bit more and so on. It speaks nothing to the severity of said symptoms, just how many there are working in tandem. I have mild autism, but my sensory aversion is quite strong. He also said to use it as a launch pad for discussion, rather than the full stop on a diagnosis. I found those things very helpful in adjusting to my life.
I have” high functioning” autism too .Thanks for this video .There is nothing mild about meltdowns and too intense emotions .I was diagnosed with a mental illness as a child and spent years in a mental hospital .getting diagnosed with autism was like having my sins forgiven .
I grew up with untreated autism and I barely got by. My mom refused to admit I was autistic till I got older but I still couldn't get help for myself till I was an adult. I basically figured out how to function by myself. I have an iq of 120-130. Im still dealing with finding myself and working through struggles. My whole life I basically thought I was just born "bad" and everyone just called me mean things.
Thank you for making this video. I would not like to be described as 'high functioning' because I feel as if I am the furthest thing from that. Also I don't like it when people say "oh you don't look like you have Autism" because they have that picture of "low functioning" Autism in their head. So thank you for explaining this.
I am 33, in a broken family, struggling to navigate life and chasing dead ends. I think I might be autistic. I can do well by myself for days on end, but people just don't understand I need more help getting through stress. At least people suspect I am autistic, but only recently am I finding people who understand that means I need help on bad days.
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.
Sam I love that you can pick this apart so thoroughly and eloquently; it's rare that I listen to something -anything- without getting irritated at how people generalize or are inacurate. My autistic brain listens to the perfection of your autistic thinking brain likes its a song.
Amazing this has to go down as one of your best videos for your honesty and candour - and for your realisation that there is an environmental factor that can increase or decrease the struggles an ASD person may have or may not have in their life
I have a High IQ and on the spectrum - I have compartmentalised most of my emotions and skills to get things done - big respect to you for taking the time to do an online open thoughts forum..
Over time dancing was particularly helpful for training body awareness I’ve done ballroom dancing for over 10 years. It took me until I was 8 to be able to ride a bike competently without training wheels. I still can’t swim freestyle properly, I only drive an automatic car and will never tow a trailer. I often joke that my body didn’t feel properly coordinated until I was 25
Litch The Shinigami it can be overcome over time if practiced with more repetitions than for your average neurotypical. Once it gets into muscle memory and is reinforced often enough it definitely improves. Now with my ballroom dancing after ten years it’s at quite a high standard except occasionally when I have to do new complex arm movements the coordination goes out the window.
@@Dancestar1981 haha when it comes to dancing it's shite for me aswell though in a different way.. i can follow the arm movements to a T.. but if i have to move my legs and arms at once i just error out and end up only moving my arms and my legs will only move up and down
My daughter is 3 and because she can speak people don’t always believe she has ASD. People have questioned me about it. Me and her spent over 6 hours with specialist for them to diagnose her I’m sure. And I was told they don’t throw that diagnosis around. Anyways I hate to tell people that she has high functioning ASD but it gets the point across. For some reason when people hear Autism they think of non verbal people they don’t see people of all functioning levels. I just want my daughter to be accepted. I need to learn how to explain things better.
I think the problem is that too many people fixate on extremes, and if you try to explain that you’re not at either extreme, you’re met with a lot of face-pulling and immaturity. It’s like “oh, that’s so boring” when you’re trying to get them to take a balanced view. Linked to that, I guess people would think I’m “high functioning” because I have a good education and good job, but I can see it right now, that if I try to correct them and get them to see that I have areas of difficulty, they sulk because they thought they were being “positive” and “kind” to you. They didn’t know me when I was at school - anyone who DID see me attempt to do PE would KNOW where my difficulties lie! (I have an under-active thyroid from birth, as well as suspecting that I’m ND from what I have read up on in the last 3-4 years.)
I am learning about Autism because I have started chatting a lot with a girl that has it. This is really helpful for me to understand her better and to maybe ask her relevant questions. Thank you! I have ADHD but I can relate to a lot of things that affects autistic people too.
It's interesting. I have been researching IQ and the varying qualities or ways of being intellingent. My IQ is 124 (above average), and God knows I definitely need support in day to day. Its not like i dont know or cant figure out how to clean, cook, dress myself, wash etc, but doing all of these every day is currently impossible for me. It would take all my time and energy and leave me with nothing else and i cant manage to remember to do all of them. I definitely need support, more than i am getting now, to live well and hopefully soon that will change.
I was diagnosed with Asperger's Syndrome and Pervasive Developmental Disorder Not Otherwise Specified. (PDD-NOS). I'm an Aspie and I'm autistic. In most cases, I just say I'm autistic unless we are discussing my diagnosis in more detail for some reason. I have no problem with the high functioning and low functioning labels. They are useful until they are misused. There is a big difference between me and a non-verbal autistic person who bites people when they get frustrated. I have been known to tell people off, but I rarely bite. An important distinction. If I'm remembering correctly, my IQ was tested at somewhere between 120 and 125. Which puts me statistically in the upper 5% or 10% of the population. My brother is a member of the Mensa organization. And my other brother would probably qualify as well. That requires an IQ of about 145. Because of uneven skill development associated with my autism, some of my mental abilities far exceed what my IQ would indicate. And in other areas, I'm either average or below average. As for my practical functionality, it's all over the map as well. You and I are both high functioning. But I likely function far better than you in some areas and far less so in others. I don't have the emotional problems that many autistic people do. I suffered from depression when I was younger, but I worked through those issues over time. And I don't have melt downs, etc. In fact, I'm more stable than most neurotypicals at this point. I have some issues with sensory overload, but it's something I don't have much difficulty managing. I just avoid kids' birthday parties and other loud and crowded places. Or I limit my exposure time to something I can handle. I can look people in the eye, and I can navigate my way through most social situations. Provided they aren't too demanding. So, I'm not married. I don't even date. And I always struggled with employment. Primarily with interacting with supervisors. But customers usually liked me. I can't drive a car, and I can't safely use most power tools. But I can cook, clean, and do most household tasks. And while I'm dependent of Social Security Disability for my income, I'm good at managing my finances and am doing surprisingly well with the small amount I receive. Now that I have the financial assistance I needed, life isn't too tough for me. I'm also just a little diabetic. I have type II diabetes that I can control with my diet. My A1C is typically in the prediabetic range. So, that's what being only a little diabetic means. Autism isn't a dirty word and neither are these labels. Provided that people understand what they mean and what they don't.
I have known since I was 7 that I had Aspergers. I am now 36 and have more problems and frustrations than I have ever had, yet I have less support now than I did growing up, when I felt like I didn't need it. Being taken off DLA and put onto Universal credit has been a real shock and struggle to meet the requirements that the job centre need from me. I also have problems sleeping at night and when I have "early" 11:30am meetings (like I have tomorrow) I will stay awake until the following evening, so I don't sleep through my alarm.
So the whole problem I have with the “needing support” label is that everyone is needing is support. Not one person is wholly self sufficient in all components of their life. No man is an island. There are definitely autistic people I know who don’t need any more support than your average person. Maybe they need support in a slightly different way but it’s not significantly so. They’ve developed coping mechanisms that make the difficulties they face due to autism minimal and manageable without additional support different from what other people need. Same way I have done for my ADHD. I guess the problem comes down to it makes it feel like you need a label like autism to need support. Like it’s totally possible for someone who isn’t diagnosed with any mental issues to need more support than someone with very mild autism. I agree with the low functioning take though and the support labels work for that. I just think there needs to be a support label that is “hey this persons needed support may be slightly different than what a ‘neurotypical’ person needs. However, the amount of support they need isn’t more or less than said average ‘neurotypical’”
This is 10000000% ACCURATE!!! I was diagnosed at the age of 38 as Autistic but mild and I can TELL YOU that I need help everyday with basic executive functions.....
I kind of think it's ok to acknowledge that there's a difference between occasionally wearing glasses, being very short sighted and bring blind. I don't think the term used is really important, but I think we all need to objectively realise when we have problems that are worse than other people's, but less serious than somebody else's.
I'm saying this as someone in a family of mostly low-support neuro divergence and one family member with severe autism. It is not the same thing. Not by a very long way.
I come from a class with 30+ people, i never said anything i never asked for help and i silently fell behind in school. I went to the same school and the same class for 9 years, the 3 classes where mixed into 2 in 7th grade which made me uncomfortable at first but i managed. I come from a divorced family, yelling at my mom, not eating because everybody commented on my eating habits and weight, ended up being a "shut-in" for many years untill i moved to my dads place and went to a 10th grade there, where i got some friends, experienced partying and drinking (its okay as long as i can drink cola and leave when i want) but i started showing extreme symptoms of the depression i have always had, and mild psychoses here and there.. I have not yet been diagnosed with autism, but multiple doctors/psychiatrists have thought it but disregarded it as i spoke very well, could formulate sentences and express myself and my feelings just fine, and my symptoms looked more like early schizophrenia (which i got diagnosed with 5 years ago and now show NO symptoms on it when big stressors was removed and i got some therapy).. I am going for a reevaluation now as both my sister and her son has gotten it diagnosed recently, and we have even more cousins or uncles that has it too.. But mine has never been discovered because for a long time i was invisible. I just blended in and went home to be weird alone.
Thank you so much for this. I find it so hard to describe. You did it really well for me. I will be saving this and using it to explain it to people. Was an emotional listen due to many of the points you so brilliantly made at the end.
Thank you for explaing the three levels of autism as published on page 52 of the DSM (I have a copy). It makes complete sense to me now. The language in the DSM is too technical for me.
a great video! I really like how you said that having kind, calm, predictable supports make people with autism feel happier. Happinesses is important! I like how you talk about thriving. I also liked how you talked about the sensitivity of people with autism and how mental health challenges are even more challenging for them. Your video also raised questions for me and I look forward to watching more of them. You are great at educating. I am a teacher and work with many people. I seek to understand better and better.
I'm on the Level 1 end of the spectrum, and I have conflicted views on this. On the one hand, autism is diagnosed at three levels on the basis of how much support that person will need, and in my experience, I don't see a person with Level 3 autism as having the same life experiences as me. I have often referred to myself as "mildly autistic" to indicate the fact that I can take care of myself, that I was able to complete university, that my social skills are a bit more conventional and that I've worked in certain kinds of jobs that require it. An autistic person with an intellectual disability couldn't do much if any of these things. However, I know many people on the spectrum don't like these labels, for many of the reasons you point out in this video, and particularly because it undercuts the challenges everyone on the spectrum has, and I get this too. The challenges of people on the spectrum are in many ways different, and that should be respected and not trivialized.
I was diagnosed with aspergers, and strongly identify with that label as that's what I've been going through live as for several years before ASD become more widely known. While I also identify with autistic, I definitely don't identify with ASD, I even feel like an imposter if I use that, because I was never tested in DSM V. If you were to label me either high or low functioning, I'd be classified as high functioning. But seeing as I am quite a mess, I constantly feel like I am not living up to that label, so I try to really not identify with it.
The funny thing with diabetes is, it's often the doctors, usually general practitioners, that say "you have a little diabetes" if your blood glucose numbers are low or you have pre-diabetes. It was a joke in the diabetes education office where I worked that how do you have "a little" diabetes? It's like telling someone they are "a little pregnant." And just like with mental health, diabetes can be "invisible" until complications really start to happen. So it's funny but also a big problem, especially since many patients are diagnosed with they're older so then they think "it's just a little so I can ignore it." Anyway. Carry on. I enjoy your videos.
I was told I could not get an asd diagonious because I (a) did not already have one and (b) I was not "severe" enough Which fun fact I had told them explicitly that I wanted to be assessed for asd because when I was a minor school staff expressed concern and my father decided that it was impossible for his children to be autistic and thusly refused to take me (and my brother) to see a professional
I really liked this video, but, totally off topic - the necklace of an open bird cage. I have a necklace like it (used to hang in my car), several necklaces with free flying birds and my favourite earings are an open empty b/cage on one side with tree on other and tiny bird in second hole above. For me, the metaphor was feeling caged/confined by the expectations of others. Apologies for content irrelevance.
At first I thought I was going to disagree with this but I actually ended up agreeing with a lot of it. I was worried from the title that it was going to be advocating for conflating us with the most low-functioning of us, which is a common thing in the US, my parents and I had to convince the schools every year to keep me in mainstream classes since the alternative was "special needs" classes where I wouldn't be academically challenged or learn anything, the school would say "but we have autistic students in our classes" but they were in a completely different situation than I was. Anyways I think recognizing it as a spectrum is indeed important as I'm in a rare situation of being an example of what used to be the stereotype (high IQ yet severe autism) but people upon hearing that I'm technically high functioning likely expect me to be a quirky neurotypical. People nowadays think autism is either quirky but functionally neurotypical or nonverbal and developmentally like a young child, with nothing else in between. My 132 IQ unfortunately has been of minimal help with social situations quite often. Some of the symptoms I have accompanying my autism are severe to extreme light sensitivity requiring me to wear sunglasses constantly (I consider them a disability aid because of that), I lack an automatic swallowing reflex so I have to think and remember to swallow. I used to wonder how other people remembered to swallow and I was astonished to find it's reflexive for most. I can't remember constantly so I usually have a lot of saliva in my mouth. And because of that, combined with how I hyperfocus on what I'm doing, I have moments where my brain switches to nonverbal (not by intent, it can only focus intently on one thing at a time). So if I'm playing a video game, I become completely silent and end up drooling all over myself because all my focus is on playing the game. It unfortunately also resulted in a somewhat traumatic humiliation at a piano recital. I was so focused on the piece I was playing that I didn't notice drool dripping down my chin, off my chin, and onto my dress. Afterwards when I noticed (and noticed many others noticed and some were laughing), I ran off crying and sort of quit piano (this was about 10 years ago). I didn't quit playing but that ended my interest in lessons and recitals. At least until recently. Outside of hyperfocus on a task, I'm very conversational, I enjoy walking up to random people to initiate a conversation. But I do certainly agree that it's frustrating when the spectrum is perceived as linear. It's more like the two axis political compass. Or maybe like a three-dimensional cube.
I feel you bro, it's not like our fault that we aren't good at making friends but even if we don't be mean or bitchy or put others down, nobody wants to be our friend, it's ok you can join autistic community online and make friends it's helps, I can be your friend
THANK YOU for making this video. It's very affirming. I am in a place right now where I am debating on trying to get an ASD diagnosis. Will that diagnosis help me mote or hurt me more? All I can do right now is continue to seek treatment for my coborbid conditions and other health conditions to overall improve my ability to be in society. As an Art Therapy masters student I worry about will getting that diagnosis hurt my career or help it. But if there were more services I could access, like funds to get sensory aids, extra help for executive functioning, funds, or access to therapies then I WOULD keep trying. It's so frustrating. It's been only a year since I have had decent health insurance.
thank you for this! I was diagnosed last year at 44 and it was disheartening to have even the assessing psychologist assume that either because I'm cis-female or because I test as high IQ (also hyperlexic) that I "must be underestimating" my abilities in the areas of self-care and other executive functioning skills. I tested as 95% blind to social subtext and showed little ability to identify emotions in others. Yet even the psychologist didn't make the connection between how executive function relies more on emotional self-regulation than IQ...*sigh* I'm grateful for the #actuallyautistic community though, a real life saver!
Then we have the people that don't know what functioning label we are, like me. I was diagnosed when I was 4 or 5 years old, but I never knew what sort of "functioning" I was. I know that I'm not "low functioning", but I don’t know if I'm "high functioning" either. It's very difficult at the moment, especially when I might even have ADHD as well.
Good point about the NT's being on their own spectrum. Well, aren't they? IQ and general abilities can be high or low in NT's. If we can be on a spectrum why can't they be on one too? They are not thought of as being on a spectrum because they are normal, and we're looked as being on a spectrum because we don't act the way they expect us to. Remember, we are the minority and that's important to them.
My father used to abuse me because of my ADHD, it wasn't directly because of that because we didn't even know I had it but all of the stuff he abused me for was caused by my ADHD
Autism is now categorized as Level 1, 2 or 3 depending on support needs. This is the same as high, medium, and low functioning, just using different words to describe the differences. Many, many people who were diagnosed as Level 1 were not diagnosed until later in life. They lived without any special accommodations or support until the time of their diagnosis. The did not REQUIRE any support. Support would have made their lives better, happier, less stressful, but it wasn't a requirement. Levels 2 and 3 definitely require support to live. In the 1970s, Level ones wouldn't have been considered autistic at all.
I have level 1 autism, and absolutely cringe at the high/low functioning labels. Because what does that actually mean???? There are days where I am killing it, on task, and nobody can function on the level I do. Then there are days where I feel so burnt out I have to check into a hospital and go on disability for 1-8 weeks. I have a genius IQ, and sometimes it’s beyond debilitating that leads to suicide ideation. It’s exhausting never being able to shut off my brain. I hate it.
I know that this was made 3 years ago but I just want to say that even though we may say ‘high and low functioning’ but the fact that it is a case of function it goes to show that we all have at least a bit of struggle in life, we do not function the same. Autism is a challenge, it is not an illness, we are different, even high functioning autistics can struggle greatly in day to day life. We are not necessarily ‘normal’ (neurotypical) even if not everyone really notices our struggles. Some of us are just pretty good at hiding our struggles
Late to this (just found your channel). Both me and my younger sister are autistic, and we're quite different, probably a good example of how different autistic people can be. Both in amount of support needed and ways we stim. I was diagnosed at 8, but my diagnosis was never explicitly told to me until about 2 months ago (I'm 22 rn). So I spent my whole life not knowing despite having an autistic sister and growing up being friends or acquaintances with other autistic people (who are all over the spectrum). I guess I got so good at masking that I didn't even realize I was masking. My sister on the other hand has is someone that is very "visibly autistic". She also has a lot of other things due to also having microcephaly. Anyways, to call me "high-functioning" and her "low-functioning" is just plain rude. It feels like people are calling my sister "lesser" all while dismissing my own struggles. I don't see us as less or more, I see us as different. Sure my sister has difficulties getting her message across, but if you'd take the time to listen you can have a great time with her. You'll also find that her memory is one to be envious of. She can memorize lines from a movie by only hearing it once. Is that not a kind of intelligence? Me on the other hand, I tend to stim more and I'm far less extroverted than my sister. She's the kind that makes friends easily and I'm the kind that got tested cause I was bad at the friends thing. Of course I got the fun mental illness gift bag that sometimes comes with being autistic. Not sure where my sister falls on that.
I feel like masking could play a part in these functioning labels too. like someone who masks a lot would be considered “high functioning” even if they have a lot of autism-related behaviors that they suppress through masking and vise versa with people who don’t mask a lot being labeled as “low functioning”. For those who don’t know, masking, as a term related to neurodivergence, would be displayed by a neurodivergent person suppressing certain things relating to their disorder and/or trying to seem neurotypical. Masking behaviors could be suppressing stims or having more “socially acceptable” stims, someone forcing themself to make eye contact, suppressing “unusually” strong expressions of emotion, or mimicking others body language or words.
At 18 i got diagnosed the year the medical professionals were deciding weather or not to keep the word aspergers so my diagnosis says aspergers/high functioning autism.
I had a mum who fought and pushed me through school and school work (inadequately mostly..., but she finally found a school for me with great staff who saved my back), if it hadn't been for this and plenty other priviledges (like studies and getting counselling and being GIVEN a flat, etc), I would probably be in a pretty "low functioning" state today. Actually... I'm living my life like a game, bluffing and hiding my cards (shitty deal!), looking like I'm alright, but unable to work "normal" hours, or to change a contract with a utility provider without it taking weeks of hassle + a £700 termination fee, or to cope emotionally with changes in the course of life that others seem to quickly absorb. Brexit? > HUGE breakdown that lasted weeks. But yes, you see a lovely educated woman who is a bit odd but can have coffee with a friend and be asked to support other people. Poker face. Literally. (I don't have facial expression. 😂)
I've heard it said that using the terms 'low-functioning', medium-functioning', and 'high-functioning' oversimplifies autism, but, actually, not using them oversimplifies it. There are 3 functioning levels of autism, but there are nuances within each. For example, whether an autist is high-functioning, medium-functioning, or low-functioning, they may or may not be able to pick up on social cues and sarcasm, they may or may not be able to understand social norms, and they may or may not be able to handle loud noises, and just because an autist is high-functioning or medium-functioning, that alone doesn't make it so that they are able to verbally communicate.
The levels you mentioned are also better because they're changeable. So a so-called "high-functioning" autistic person could come under level 3 (max support) when struggling with mental health, while someone more "low-functioning" might thrive in the right environments and therefore transition from a higher level of support to a lower level :)
Sam, I appreciate your knowledge, wisdom, and ability to explain how autism interferes with you daily life. I am 66 years old, and have a 23 year old daughter who struggles daily with being autistic. Sarah is my best friend in this world, and actually the best friend I have ever had. I do not believe I could ever call autism a curse, because it has made Sarah a sensitive, empathetic, observer of the human condition. There are very few high quality human being in this world, and she is one of them. I mean, my god, look at our so called leaders, a soulless group of murders. Yes, I am an American, sadly. I honestly believe if the world had autistic leaders our planet would be a much more humane place to live. P.S. I do not know how to change that damn photo that represents me, I did not chose it, google did. Also screw the haters, you know your subject.
Labeling someone high functioning based on intelligence is BS. My grades used to be in the top 1% of my country, yet I dropped out at 16, became homeless twice, am unable to hold a job and will go weeks without a shower. My brother used to be considered low functioning, still can't multiply 7 times 3, but he taught himself English and coding, is in college, does all his daily chores and will probably land a job as white hat hacker in the near future. Intelligence means nothing and these labels are extremely harmful for everyone involved. I don't get access to the help I need because I'm expected to be able to do things myself, and my brother never got access to high school education because he was deemed too unintelligent. Look at us now. I really hope these labels will disappear or will start being used properly to describe someone's ACTUAL ability to function and need for help. They're not helping anyone now.
I made it to my 30s without a diagnosis...but never had a job or driven a car or had many friends...had a drug addiction due to self medicating. My functioning is pretty bad...but my IQ is high...so people expect me to be able to do everything and when I can't it's because I'm lazy or stubborn or just won't try..etc.
For me If I am feeling more secure then I am more 'normal' and I come across as 'less' autistic but if I am like at my house or school than I can panic and go non verbal and 'more' autistic.
I can see your point but I don't really care anymore if people call me "high functioning" as people nearly get all their information from the main stream media and honesty you can't expect people to think for themselves and think outside the box. Even support workers and psychologist have very little clue about autism and how it manifests. Once I stopped expecting people to think outside the box the less disappointed I get. If I have a special gift it is thinking for myself and every one hates a person who questions everything.
I'm so confused by the diagnostic system in the UK. No functioning label for Uncle, diagnosed this year, but a diagnosis of Aspergers even though he has co-morbid learning disabilities.
I know I might be off topic a bit…love the video by the way True story…my picture was never in the high school yearbook when I graduated, and I’m so proud I cashed in to buy it 😂
Luckily the uses of high and low functioning autism isn't applied anymore and that's a fantastic thing. My daughter (3YO) was diagnosed with Autism Spectrum Disorder, no functioning level, which I'm super glad about.
Thankyou autism is not a dirty word... as an undigasnoised atypical brainy person I think its very important to introduise the FACTS about Nuero diverity please excuse my spelling .... I love your channell🍉
Any suggestions on when people say, "Oh, I didn't even know she was Autistic. I couldn't tell." When talking about your 5 year old or dismissing an Autistic person by saying "Well, everyone struggles with stuff." Professionals, friends and family.
I think I might have might have mild autism after having counselling and talking about childhood experiences. I also have problems with relationships and communication. I went to the Dr to discuss it and she said I shouldn't look at the past too much and advised that she would refer me to the mental health team!!
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!
"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.
Yes, thank you
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*
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!
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 UA-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.
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
HI Sam! I'm diabetic, type one, and genuinely laughed full on out loud at the mildly diabetic allegory. Nicely done :)
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.
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 🙏 😭💕
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.
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!
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
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.
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.
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
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.
"But accommodating autistic people so we get relief from symptoms, so we *seem* less autistic doesn't make us less less autistic, it makes us happier"
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 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.
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.
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 ~
Thanks for this video. I'm at an interesting point in my life where I'm heading down a slippery slope of reduced ability to function, as a result of living in an unsupportive context. Being married with children and having only been diagnosed (provisionally) in 2020, I'm still expected to maintain a veneer of competence, in the face of feeling like a failure as a husband and dad.
I really enjoy watching these videos, as it helps to discover that there are so many others who experience similar challenges to me. I just need to work out how to employ this knowledge such that I can reduce the meltdowns and burnout! I'd love to just be me, rather than struggling to be "high-functioning".
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.
as a self diagnosed 37 year old cis woman arguing about functioning labels on fb, watching this video helped me to feel seen. thank you. so much for not neglecting the factor privilege plays in the autistic or non autistic human's ability to function in society.
Watching your videos is like taking a trip through my own brain. I appreciate them so much. I’m now figuring out in my 40s that I’m autistic.
On an unrelated note, you remind me a bit of Jennifer Saunders.
Thank you for this video, I am what others would consider high functioning because I have a full-time job, but what people don’t know is that I had a period of time where I was housebound and needed support to be able to leave my house, and with treatment I eventually became somewhat independent. It is a daily struggle just to get myself to work and that is invisible to people. The only person who noticed is my friend whom I consider family that I am on the spectrum, cause he himself is autistic and works with disabled children, that was a huge moment for me cause before him no one believed me.
Sam. I know this video is more than a couple of years old. But you essentially put most all my daily struggles in this video. I've never been good at explaining my daily struggles but what you have covered here is probably as close as I've heard , so far. I was born in 1957 after my mother had carried me for 11 & 1/2 months. Born with no discernable iron at all in my blood , and unable , until 6 months old to receive any blood transfusions. Iron facilitates the completion of the neuro connections in an infants brain shortly after birth. I wasn't diagnosed until I was 61 or 62, not sure exactly. Bullied all through my school years and have daily struggles with everything you've mentioned here. I have no support system, at all and some years ago I basically told the VA psych department to take a hike. I was done with them experimenting on me. So I live with my depression, anxiety and all the other wonderful things we Aspie's deal with. Looking for the day when this is all, finally over. I don't trust therapists or shrinks and will not take another one of their pills so all those feeling sympathy and concern, please, do not suggest it.
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.
I used to say I'm Aspie. According to DSM-V I'm not autistic because I don't require support. Today I don't say anything. I have no need to debate what label to use. I don't see a label being useful. Plus I found a cure having lived as a hermit for almost 3 years now. I'm 64 years old. Being a hermit has been so nice. Zero stress, haven't even been close to having a meltdown. It's been strange because I feel completely normal. So normal that a couple times I thought I could easily interact again and gave it a try...epic fail, back to hermit which is find. The fail is partly others not liking what I say but mostly I don't really like interacting. It's boring and I have to go right back to masking (meaning validating other people's fantasy worlds). I'd rather be in my garden, working on my house, on a walk or writing software.
One interesting thing about being a hermit is terms become useless. Even my name has become rather meaningless. Imagine being the last person on Earth, what does it matter what the name of a plant? You only need to understand the pant. It seemed to be the online world is obsessed with naming things, grouping everything, and trying to tweak terms to have the coolest sounding term.
2022. Thank you! Trying to figure out if I have autism or not at 58 years old. I am sure there are many who are also older and looking for answers. Good luck to everyone who are exploring autism like me for the first time. ❤
Thank you, I have shared your video because your explanation of Autism is excellent.
I was diagnosed with Asperger's Syndrome at the age of 60 and the two Psychiatrists told me, when they gave me my diagnosis there was nothing they could do for me because I am too intelligent and have worked out strategies to deal with difficult situations.
They didn't see me having to psyche myself up to go to business meetings or Networking meetings.
The diagnosis did explain why some people find me rude and aggressive, I prefer direct and assertive.
You seem to have grasped your diagnosis and run with it.
I just filed my in a desk drawer.
I joined various Asperger's groups on Facebook but most of the people there seem to have much greater struggles then me.
I have worked since I was 16, I have 3 times as many letters after my name than in it and am now working on retirement, failing.
Still a Director of 6 companies and Treasurer of a Charity.
Sorry for dumping on you but you are saying a lot of things that resonate with me.
Please delete this if it's inappropriate.
Best Regards
Edward
Seems like you have lived a good and full life.
My psych explained that I should think of mild, moderate etc. labels as more of a determining criteria than a description, mild is just a few symptom boxes ticked, moderate is a bit more and so on.
It speaks nothing to the severity of said symptoms, just how many there are working in tandem.
I have mild autism, but my sensory aversion is quite strong.
He also said to use it as a launch pad for discussion, rather than the full stop on a diagnosis.
I found those things very helpful in adjusting to my life.
I have” high functioning” autism too .Thanks for this video .There is nothing mild about meltdowns and too intense emotions .I was diagnosed with a mental illness as a child and spent years in a mental hospital .getting diagnosed with autism was like having my sins forgiven .
I grew up with untreated autism and I barely got by. My mom refused to admit I was autistic till I got older but I still couldn't get help for myself till I was an adult. I basically figured out how to function by myself. I have an iq of 120-130. Im still dealing with finding myself and working through struggles. My whole life I basically thought I was just born "bad" and everyone just called me mean things.
Thank you for making this video. I would not like to be described as 'high functioning' because I feel as if I am the furthest thing from that. Also I don't like it when people say "oh you don't look like you have Autism" because they have that picture of "low functioning" Autism in their head. So thank you for explaining this.
I am 33, in a broken family, struggling to navigate life and chasing dead ends. I think I might be autistic. I can do well by myself for days on end, but people just don't understand I need more help getting through stress. At least people suspect I am autistic, but only recently am I finding people who understand that means I need help on bad days.
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.
Sam I love that you can pick this apart so thoroughly and eloquently; it's rare that I listen to something -anything- without getting irritated at how people generalize or are inacurate. My autistic brain listens to the perfection of your autistic thinking brain likes its a song.
Amazing this has to go down as one of your best videos for your honesty and candour - and for your realisation that there is an environmental factor that can increase or decrease the struggles an ASD person may have or may not have in their life
I have a High IQ and on the spectrum - I have compartmentalised most of my emotions and skills to get things done - big respect to you for taking the time to do an online open thoughts forum..
Over time dancing was particularly helpful for training body awareness I’ve done ballroom dancing for over 10 years. It took me until I was 8 to be able to ride a bike competently without training wheels. I still can’t swim freestyle properly, I only drive an automatic car and will never tow a trailer. I often joke that my body didn’t feel properly coordinated until I was 25
Dancestar1981 i mean i’m 20 and i can’t completely normally ride a bike 😂 i can’t stick my hand out or i’ll just flop over
Litch The Shinigami it can be overcome over time if practiced with more repetitions than for your average neurotypical. Once it gets into muscle memory and is reinforced often enough it definitely improves. Now with my ballroom dancing after ten years it’s at quite a high standard except occasionally when I have to do new complex arm movements the coordination goes out the window.
@@Dancestar1981 haha when it comes to dancing it's shite for me aswell though in a different way.. i can follow the arm movements to a T.. but if i have to move my legs and arms at once i just error out and end up only moving my arms and my legs will only move up and down
My daughter is 3 and because she can speak people don’t always believe she has ASD. People have questioned me about it. Me and her spent over 6 hours with specialist for them to diagnose her I’m sure. And I was told they don’t throw that diagnosis around. Anyways I hate to tell people that she has high functioning ASD but it gets the point across. For some reason when people hear Autism they think of non verbal people they don’t see people of all functioning levels. I just want my daughter to be accepted. I need to learn how to explain things better.
I think the problem is that too many people fixate on extremes, and if you try to explain that you’re not at either extreme, you’re met with a lot of face-pulling and immaturity. It’s like “oh, that’s so boring” when you’re trying to get them to take a balanced view.
Linked to that, I guess people would think I’m “high functioning” because I have a good education and good job, but I can see it right now, that if I try to correct them and get them to see that I have areas of difficulty, they sulk because they thought they were being “positive” and “kind” to you.
They didn’t know me when I was at school - anyone who DID see me attempt to do PE would KNOW where my difficulties lie! (I have an under-active thyroid from birth, as well as suspecting that I’m ND from what I have read up on in the last 3-4 years.)
They wouldnt call me high functioning if they saw me cancel my whole day, just because the garbage truck arrived off-schedule...
I am learning about Autism because I have started chatting a lot with a girl that has it. This is really helpful for me to understand her better and to maybe ask her relevant questions. Thank you!
I have ADHD but I can relate to a lot of things that affects autistic people too.
It's interesting. I have been researching IQ and the varying qualities or ways of being intellingent.
My IQ is 124 (above average), and God knows I definitely need support in day to day. Its not like i dont know or cant figure out how to clean, cook, dress myself, wash etc, but doing all of these every day is currently impossible for me. It would take all my time and energy and leave me with nothing else and i cant manage to remember to do all of them. I definitely need support, more than i am getting now, to live well and hopefully soon that will change.
I was diagnosed with Asperger's Syndrome and Pervasive Developmental Disorder Not Otherwise Specified. (PDD-NOS). I'm an Aspie and I'm autistic. In most cases, I just say I'm autistic unless we are discussing my diagnosis in more detail for some reason. I have no problem with the high functioning and low functioning labels. They are useful until they are misused. There is a big difference between me and a non-verbal autistic person who bites people when they get frustrated. I have been known to tell people off, but I rarely bite. An important distinction. If I'm remembering correctly, my IQ was tested at somewhere between 120 and 125. Which puts me statistically in the upper 5% or 10% of the population. My brother is a member of the Mensa organization. And my other brother would probably qualify as well. That requires an IQ of about 145. Because of uneven skill development associated with my autism, some of my mental abilities far exceed what my IQ would indicate. And in other areas, I'm either average or below average.
As for my practical functionality, it's all over the map as well. You and I are both high functioning. But I likely function far better than you in some areas and far less so in others. I don't have the emotional problems that many autistic people do. I suffered from depression when I was younger, but I worked through those issues over time. And I don't have melt downs, etc. In fact, I'm more stable than most neurotypicals at this point. I have some issues with sensory overload, but it's something I don't have much difficulty managing. I just avoid kids' birthday parties and other loud and crowded places. Or I limit my exposure time to something I can handle. I can look people in the eye, and I can navigate my way through most social situations. Provided they aren't too demanding. So, I'm not married. I don't even date. And I always struggled with employment. Primarily with interacting with supervisors. But customers usually liked me. I can't drive a car, and I can't safely use most power tools. But I can cook, clean, and do most household tasks. And while I'm dependent of Social Security Disability for my income, I'm good at managing my finances and am doing surprisingly well with the small amount I receive. Now that I have the financial assistance I needed, life isn't too tough for me.
I'm also just a little diabetic. I have type II diabetes that I can control with my diet. My A1C is typically in the prediabetic range. So, that's what being only a little diabetic means. Autism isn't a dirty word and neither are these labels. Provided that people understand what they mean and what they don't.
I have known since I was 7 that I had Aspergers. I am now 36 and have more problems and frustrations than I have ever had, yet I have less support now than I did growing up, when I felt like I didn't need it. Being taken off DLA and put onto Universal credit has been a real shock and struggle to meet the requirements that the job centre need from me. I also have problems sleeping at night and when I have "early" 11:30am meetings (like I have tomorrow) I will stay awake until the following evening, so I don't sleep through my alarm.
IQ ("intelligence" quotient) is also a bad indicator of IQ
So the whole problem I have with the “needing support” label is that everyone is needing is support. Not one person is wholly self sufficient in all components of their life. No man is an island. There are definitely autistic people I know who don’t need any more support than your average person. Maybe they need support in a slightly different way but it’s not significantly so. They’ve developed coping mechanisms that make the difficulties they face due to autism minimal and manageable without additional support different from what other people need. Same way I have done for my ADHD. I guess the problem comes down to it makes it feel like you need a label like autism to need support. Like it’s totally possible for someone who isn’t diagnosed with any mental issues to need more support than someone with very mild autism. I agree with the low functioning take though and the support labels work for that. I just think there needs to be a support label that is “hey this persons needed support may be slightly different than what a ‘neurotypical’ person needs. However, the amount of support they need isn’t more or less than said average ‘neurotypical’”
This is 10000000% ACCURATE!!! I was diagnosed at the age of 38 as Autistic but mild and I can TELL YOU that I need help everyday with basic executive functions.....
I kind of think it's ok to acknowledge that there's a difference between occasionally wearing glasses, being very short sighted and bring blind. I don't think the term used is really important, but I think we all need to objectively realise when we have problems that are worse than other people's, but less serious than somebody else's.
I'm saying this as someone in a family of mostly low-support neuro divergence and one family member with severe autism. It is not the same thing. Not by a very long way.
This is precisely how I feel. Thanks for explaining it to others.
I come from a class with 30+ people, i never said anything i never asked for help and i silently fell behind in school.
I went to the same school and the same class for 9 years, the 3 classes where mixed into 2 in 7th grade which made me uncomfortable at first but i managed.
I come from a divorced family, yelling at my mom, not eating because everybody commented on my eating habits and weight, ended up being a "shut-in" for many years untill i moved to my dads place and went to a 10th grade there, where i got some friends, experienced partying and drinking (its okay as long as i can drink cola and leave when i want) but i started showing extreme symptoms of the depression i have always had, and mild psychoses here and there..
I have not yet been diagnosed with autism, but multiple doctors/psychiatrists have thought it but disregarded it as i spoke very well, could formulate sentences and express myself and my feelings just fine, and my symptoms looked more like early schizophrenia (which i got diagnosed with 5 years ago and now show NO symptoms on it when big stressors was removed and i got some therapy).. I am going for a reevaluation now as both my sister and her son has gotten it diagnosed recently, and we have even more cousins or uncles that has it too..
But mine has never been discovered because for a long time i was invisible. I just blended in and went home to be weird alone.
Thank you so much for this. I find it so hard to describe. You did it really well for me. I will be saving this and using it to explain it to people. Was an emotional listen due to many of the points you so brilliantly made at the end.
Thank you for explaing the three levels of autism as published on page 52 of the DSM (I have a copy). It makes complete sense to me now. The language in the DSM is too technical for me.
a great video! I really like how you said that having kind, calm, predictable supports make people with autism feel happier. Happinesses is important! I like how you talk about thriving. I also liked how you talked about the sensitivity of people with autism and how mental health challenges are even more challenging for them. Your video also raised questions for me and I look forward to watching more of them. You are great at educating. I am a teacher and work with many people. I seek to understand better and better.
I'm on the Level 1 end of the spectrum, and I have conflicted views on this.
On the one hand, autism is diagnosed at three levels on the basis of how much support that person will need, and in my experience, I don't see a person with Level 3 autism as having the same life experiences as me. I have often referred to myself as "mildly autistic" to indicate the fact that I can take care of myself, that I was able to complete university, that my social skills are a bit more conventional and that I've worked in certain kinds of jobs that require it. An autistic person with an intellectual disability couldn't do much if any of these things.
However, I know many people on the spectrum don't like these labels, for many of the reasons you point out in this video, and particularly because it undercuts the challenges everyone on the spectrum has, and I get this too. The challenges of people on the spectrum are in many ways different, and that should be respected and not trivialized.
I was diagnosed with aspergers, and strongly identify with that label as that's what I've been going through live as for several years before ASD become more widely known. While I also identify with autistic, I definitely don't identify with ASD, I even feel like an imposter if I use that, because I was never tested in DSM V. If you were to label me either high or low functioning, I'd be classified as high functioning. But seeing as I am quite a mess, I constantly feel like I am not living up to that label, so I try to really not identify with it.
The funny thing with diabetes is, it's often the doctors, usually general practitioners, that say "you have a little diabetes" if your blood glucose numbers are low or you have pre-diabetes. It was a joke in the diabetes education office where I worked that how do you have "a little" diabetes? It's like telling someone they are "a little pregnant." And just like with mental health, diabetes can be "invisible" until complications really start to happen. So it's funny but also a big problem, especially since many patients are diagnosed with they're older so then they think "it's just a little so I can ignore it." Anyway. Carry on. I enjoy your videos.
I was told I could not get an asd diagonious because I (a) did not already have one and (b) I was not "severe" enough
Which fun fact I had told them explicitly that I wanted to be assessed for asd because when I was a minor school staff expressed concern and my father decided that it was impossible for his children to be autistic and thusly refused to take me (and my brother) to see a professional
I really liked this video, but, totally off topic - the necklace of an open bird cage. I have a necklace like it (used to hang in my car), several necklaces with free flying birds and my favourite earings are an open empty b/cage on one side with tree on other and tiny bird in second hole above. For me, the metaphor was feeling caged/confined by the expectations of others. Apologies for content irrelevance.
Thank you so much for the work you do. So important. So helpful.
At first I thought I was going to disagree with this but I actually ended up agreeing with a lot of it. I was worried from the title that it was going to be advocating for conflating us with the most low-functioning of us, which is a common thing in the US, my parents and I had to convince the schools every year to keep me in mainstream classes since the alternative was "special needs" classes where I wouldn't be academically challenged or learn anything, the school would say "but we have autistic students in our classes" but they were in a completely different situation than I was. Anyways I think recognizing it as a spectrum is indeed important as I'm in a rare situation of being an example of what used to be the stereotype (high IQ yet severe autism) but people upon hearing that I'm technically high functioning likely expect me to be a quirky neurotypical. People nowadays think autism is either quirky but functionally neurotypical or nonverbal and developmentally like a young child, with nothing else in between. My 132 IQ unfortunately has been of minimal help with social situations quite often. Some of the symptoms I have accompanying my autism are severe to extreme light sensitivity requiring me to wear sunglasses constantly (I consider them a disability aid because of that), I lack an automatic swallowing reflex so I have to think and remember to swallow. I used to wonder how other people remembered to swallow and I was astonished to find it's reflexive for most. I can't remember constantly so I usually have a lot of saliva in my mouth. And because of that, combined with how I hyperfocus on what I'm doing, I have moments where my brain switches to nonverbal (not by intent, it can only focus intently on one thing at a time). So if I'm playing a video game, I become completely silent and end up drooling all over myself because all my focus is on playing the game. It unfortunately also resulted in a somewhat traumatic humiliation at a piano recital. I was so focused on the piece I was playing that I didn't notice drool dripping down my chin, off my chin, and onto my dress. Afterwards when I noticed (and noticed many others noticed and some were laughing), I ran off crying and sort of quit piano (this was about 10 years ago). I didn't quit playing but that ended my interest in lessons and recitals. At least until recently. Outside of hyperfocus on a task, I'm very conversational, I enjoy walking up to random people to initiate a conversation. But I do certainly agree that it's frustrating when the spectrum is perceived as linear. It's more like the two axis political compass. Or maybe like a three-dimensional cube.
The last few minutes of this are so spot on! Excellently put. 🙂
I have struggled all my life, no friends no job
I feel you bro, it's not like our fault that we aren't good at making friends but even if we don't be mean or bitchy or put others down, nobody wants to be our friend, it's ok you can join autistic community online and make friends it's helps, I can be your friend
THANK YOU for making this video. It's very affirming. I am in a place right now where I am debating on trying to get an ASD diagnosis. Will that diagnosis help me mote or hurt me more? All I can do right now is continue to seek treatment for my coborbid conditions and other health conditions to overall improve my ability to be in society. As an Art Therapy masters student I worry about will getting that diagnosis hurt my career or help it. But if there were more services I could access, like funds to get sensory aids, extra help for executive functioning, funds, or access to therapies then I WOULD keep trying.
It's so frustrating. It's been only a year since I have had decent health insurance.
thank you for this! I was diagnosed last year at 44 and it was disheartening to have even the assessing psychologist assume that either because I'm cis-female or because I test as high IQ (also hyperlexic) that I "must be underestimating" my abilities in the areas of self-care and other executive functioning skills. I tested as 95% blind to social subtext and showed little ability to identify emotions in others. Yet even the psychologist didn't make the connection between how executive function relies more on emotional self-regulation than IQ...*sigh* I'm grateful for the #actuallyautistic community though, a real life saver!
Then we have the people that don't know what functioning label we are, like me.
I was diagnosed when I was 4 or 5 years old, but I never knew what sort of "functioning" I was. I know that I'm not "low functioning", but I don’t know if I'm "high functioning" either. It's very difficult at the moment, especially when I might even have ADHD as well.
Finally someone actually explains why people abandoned this type of labeling.
Good point about the NT's being on their own spectrum. Well, aren't they? IQ and general abilities can be high or low in NT's. If we can be on a spectrum why can't they be on one too? They are not thought of as being on a spectrum because they are normal, and we're looked as being on a spectrum because we don't act the way they expect us to. Remember, we are the minority and that's important to them.
My father used to abuse me because of my ADHD, it wasn't directly because of that because we didn't even know I had it but all of the stuff he abused me for was caused by my ADHD
My family thinks I am taking autism when I really have it, and they've been very abusive
Autism is now categorized as Level 1, 2 or 3 depending on support needs. This is the same as high, medium, and low functioning, just using different words to describe the differences. Many, many people who were diagnosed as Level 1 were not diagnosed until later in life. They lived without any special accommodations or support until the time of their diagnosis. The did not REQUIRE any support. Support would have made their lives better, happier, less stressful, but it wasn't a requirement. Levels 2 and 3 definitely require support to live. In the 1970s, Level ones wouldn't have been considered autistic at all.
Welp I'm realizing some internalized ableism and having a fucking avatar flashback of all the times I got called high functioning
I have level 1 autism, and absolutely cringe at the high/low functioning labels. Because what does that actually mean????
There are days where I am killing it, on task, and nobody can function on the level I do.
Then there are days where I feel so burnt out I have to check into a hospital and go on disability for 1-8 weeks.
I have a genius IQ, and sometimes it’s beyond debilitating that leads to suicide ideation. It’s exhausting never being able to shut off my brain. I hate it.
This is a fantastic and brave piece of work. Thanks Yo Samdy Sam
I know that this was made 3 years ago but I just want to say that even though we may say ‘high and low functioning’ but the fact that it is a case of function it goes to show that we all have at least a bit of struggle in life, we do not function the same. Autism is a challenge, it is not an illness, we are different, even high functioning autistics can struggle greatly in day to day life. We are not necessarily ‘normal’ (neurotypical) even if not everyone really notices our struggles. Some of us are just pretty good at hiding our struggles
"High functioning" and "low functioning" are just labels to describe how normal you appear.
Late to this (just found your channel). Both me and my younger sister are autistic, and we're quite different, probably a good example of how different autistic people can be. Both in amount of support needed and ways we stim.
I was diagnosed at 8, but my diagnosis was never explicitly told to me until about 2 months ago (I'm 22 rn). So I spent my whole life not knowing despite having an autistic sister and growing up being friends or acquaintances with other autistic people (who are all over the spectrum). I guess I got so good at masking that I didn't even realize I was masking.
My sister on the other hand has is someone that is very "visibly autistic". She also has a lot of other things due to also having microcephaly.
Anyways, to call me "high-functioning" and her "low-functioning" is just plain rude. It feels like people are calling my sister "lesser" all while dismissing my own struggles. I don't see us as less or more, I see us as different. Sure my sister has difficulties getting her message across, but if you'd take the time to listen you can have a great time with her. You'll also find that her memory is one to be envious of. She can memorize lines from a movie by only hearing it once. Is that not a kind of intelligence?
Me on the other hand, I tend to stim more and I'm far less extroverted than my sister. She's the kind that makes friends easily and I'm the kind that got tested cause I was bad at the friends thing. Of course I got the fun mental illness gift bag that sometimes comes with being autistic. Not sure where my sister falls on that.
I feel like masking could play a part in these functioning labels too. like someone who masks a lot would be considered “high functioning” even if they have a lot of autism-related behaviors that they suppress through masking and vise versa with people who don’t mask a lot being labeled as “low functioning”.
For those who don’t know, masking, as a term related to neurodivergence, would be displayed by a neurodivergent person suppressing certain things relating to their disorder and/or trying to seem neurotypical. Masking behaviors could be suppressing stims or having more “socially acceptable” stims, someone forcing themself to make eye contact, suppressing “unusually” strong expressions of emotion, or mimicking others body language or words.
At 18 i got diagnosed the year the medical professionals were deciding weather or not to keep the word aspergers so my diagnosis says aspergers/high functioning autism.
I had a mum who fought and pushed me through school and school work (inadequately mostly..., but she finally found a school for me with great staff who saved my back), if it hadn't been for this and plenty other priviledges (like studies and getting counselling and being GIVEN a flat, etc), I would probably be in a pretty "low functioning" state today. Actually... I'm living my life like a game, bluffing and hiding my cards (shitty deal!), looking like I'm alright, but unable to work "normal" hours, or to change a contract with a utility provider without it taking weeks of hassle + a £700 termination fee, or to cope emotionally with changes in the course of life that others seem to quickly absorb. Brexit? > HUGE breakdown that lasted weeks.
But yes, you see a lovely educated woman who is a bit odd but can have coffee with a friend and be asked to support other people. Poker face. Literally. (I don't have facial expression. 😂)
I've heard it said that using the terms 'low-functioning', medium-functioning', and 'high-functioning' oversimplifies autism, but, actually, not using them oversimplifies it. There are 3 functioning levels of autism, but there are nuances within each. For example, whether an autist is high-functioning, medium-functioning, or low-functioning, they may or may not be able to pick up on social cues and sarcasm, they may or may not be able to understand social norms, and they may or may not be able to handle loud noises, and just because an autist is high-functioning or medium-functioning, that alone doesn't make it so that they are able to verbally communicate.
The levels you mentioned are also better because they're changeable. So a so-called "high-functioning" autistic person could come under level 3 (max support) when struggling with mental health, while someone more "low-functioning" might thrive in the right environments and therefore transition from a higher level of support to a lower level :)
Sam, I appreciate your knowledge, wisdom, and ability to explain how autism interferes with you daily life. I am 66 years old, and have a 23 year old daughter who struggles daily with being autistic. Sarah is my best friend in this world, and actually the best friend I have ever had. I do not believe I could ever call autism a curse, because it has made Sarah a sensitive, empathetic, observer of the human condition. There are very few high quality human being in this world, and she is one of them. I mean, my god, look at our so called leaders, a soulless group of murders. Yes, I am an American, sadly. I honestly believe if the world had autistic leaders our planet would be a much more humane place to live.
P.S. I do not know how to change that damn photo that represents me, I did not chose it, google did. Also screw the haters, you know your subject.
Labeling someone high functioning based on intelligence is BS. My grades used to be in the top 1% of my country, yet I dropped out at 16, became homeless twice, am unable to hold a job and will go weeks without a shower. My brother used to be considered low functioning, still can't multiply 7 times 3, but he taught himself English and coding, is in college, does all his daily chores and will probably land a job as white hat hacker in the near future. Intelligence means nothing and these labels are extremely harmful for everyone involved. I don't get access to the help I need because I'm expected to be able to do things myself, and my brother never got access to high school education because he was deemed too unintelligent. Look at us now. I really hope these labels will disappear or will start being used properly to describe someone's ACTUAL ability to function and need for help. They're not helping anyone now.
I made it to my 30s without a diagnosis...but never had a job or driven a car or had many friends...had a drug addiction due to self medicating. My functioning is pretty bad...but my IQ is high...so people expect me to be able to do everything and when I can't it's because I'm lazy or stubborn or just won't try..etc.
For me If I am feeling more secure then I am more 'normal' and I come across as 'less' autistic but if I am like at my house or school than I can panic and go non verbal and 'more' autistic.
I can see your point but I don't really care anymore if people call me "high functioning" as people nearly get all their information from the main stream media and honesty you can't expect people to think for themselves and think outside the box. Even support workers and psychologist have very little clue about autism and how it manifests. Once I stopped expecting people to think outside the box the less disappointed I get. If I have a special gift it is thinking for myself and every one hates a person who questions everything.
I'm so confused by the diagnostic system in the UK. No functioning label for Uncle, diagnosed this year, but a diagnosis of Aspergers even though he has co-morbid learning disabilities.
I know I might be off topic a bit…love the video by the way
True story…my picture was never in the high school yearbook when I graduated, and I’m so proud I cashed in to buy it 😂
I found the high the function the more aware you are of your problems which then causes us to get depressed
Luckily the uses of high and low functioning autism isn't applied anymore and that's a fantastic thing.
My daughter (3YO) was diagnosed with Autism Spectrum Disorder, no functioning level, which I'm super glad about.
Thankyou autism is not a dirty word... as an undigasnoised atypical brainy person I think its very important to introduise the FACTS about Nuero diverity please excuse my spelling .... I love your channell🍉
Any suggestions on when people say, "Oh, I didn't even know she was Autistic. I couldn't tell." When talking about your 5 year old or dismissing an Autistic person by saying "Well, everyone struggles with stuff." Professionals, friends and family.
I think I might have might have mild autism after having counselling and talking about childhood experiences. I also have problems with relationships and communication. I went to the Dr to discuss it and she said I shouldn't look at the past too much and advised that she would refer me to the mental health team!!
"looking out the window for most of it", this is what my school reports say :D