The "mistake" that people make by claiming "autism is on the rise" is that when a 70 year old person gets diagnosed, it actually means that 70 year ago, the person was already autistic without knowing... so they should actually correct for the age back in time, but they never do.
No because some of us who’ve actually studied the increase in Diagnosis have accounted for this variability and yet, we still see a significant increase. The problem in many arguments is one side doesn’t familiarise themselves with the other sides arguments, or worse only addresses the arguments they believe are easily undermined. This is what’s happening here Even the speaker admits here “ this is a likely explanation” and “ I can’t prove this”, in short she’s not addressing the data that shows a legitimate increase.
As a woman who finally figured out at 61 that I was autistic, this is huge. The impacts of living a life without the supports I desperately needed has gone beyond me and to the next generation with my children. This is so important for people to understand. I have to fight for the legitimacy of my self-diagnosis every time I talk about it to a medical professional, because most of them have such outdated information.
As a male, I was much the same. I'd encountered The Tavistock Clinic as a lad, during the extension of IQ testing to kids, and they'd banned me from ever testing again - it's in the maths. Eventually what I was capable of became undeniable, so they tested me anyway, and the truth came out: an IQ in the mid-160s at peak, doing the freakish, consistently. It did its thing during the testing, so they added hyperperception, and the Cabinet Office pitched in, looking for help in the weirdos and misfits. My immediate reply was revealing, I asked for academic studies and came up empty. This was 2015. So I started looking for myself, and found the same thing. DSM-5 was clearly wrong, and when I looked at the history of the diagnosis, came up with narcissism in the diagnosticians. You can't understand me? Communications is a two-way street. Academic specialists in the subject can. I'm obsessive? I'm researching something new and important. I have to be careful. I melt down? You would too if you were as traumatised as me. Dabrowsky's overexcitability thesis amounts to the same thing: the Tavistock Clinic reported I had the GK of a 14 year old, aged 8, by 11 I was dealing at par with a Russian Oligarch, and 14 I left my first perpetual mark on the world, placing my surname at the heart of almost all computer code - a poor joke made a lot of sense. So I'd come to my own conclusions, and teaching-as-indoctrination was futile. In 2020, one of my authorities in the study I was talking about moved to Head Yale's new Genius School, so he referred me to his thesis, The Hidden Habits of Genius, and I replied with a mantra study massively extending some of his own work. He agrees, I probably qualify. That created an alter-ego, and as I'm not schizoid, I had to go through my persona looking for the core truth. That left me in grief for what wasn't, added to your comments about lack of support. I'm actually working the other way, therefore, but one thing is clear: only one ASD patient has been listened to, Temple Gradin, and they've reverted to talking past us. For the last hundred years, all the work's gone into low functionality, and they've discovered something: you can't make a silk purse out of a sow's ear. In the mean time, they've trashed their best.
I can really identify with what you've written here, in all aspects. I'll focus on how medical professionals react to a self-diagnosis, as that's a primary issue in my life right now. My experience is, medical professionals generally want to be *the expert* and get threatened when a patient uses their intelligence and abilities to figure out that they have autism. There's a hefty dose of authoritarianism in that system. I will talk with the medprof in a sincere attempt to have a dialogue and to collaborate, but I also won't hesitate to fire a medprof who proves their priority is "being the authority" - who won't collaborate, and who doesn't listen. Best, Lynn
@@lynncohen1297 Absolutely. But it's worse than that, they present a different identity to your own so you have a grieving process to cope with as you assassinate the false alter ego. First do no harm.
@@lynncohen1297 I've had better luck generally with Nurse Practitioners than MDs, and generally better with women than men, but it can still be tough to dislodge the things people think they know.
Access to information, via RUclips, Tiktok, etc., is why so many of us are realizing that we were missed. Armed with this new knowledge, life suddenly makes sense.
Yup. I doubt that many of these studies are taking social media into account because a self diagnosis from discovering information that fits you to a T and explains so many things, isn't scientifically verified by an "expert". And, from a lot of what i've read, an unfortunate number of "experts" have no freaking clue what they are talking about or what to look for.
“We were missed” brought a tear to my eye. I can’t help but feel angry about my own neurodiversity, rationalised by myself in my late 30s. I feel overlooked, not missed 😢
Same here, but much older. I was in my mid 40s when I spontaneously took an online IQ test. I was shocked! No, I'm not genius level, but far from average. My parents shaped me to be a housewife and mother. 10 years after the IQ test, I wondered if I could be autistic, which could have influenced my parent's perception of me. I took another online test, this time for autism - there were 35 questions, as I recall. If the resulting score was over 5, it was likely that autism was present. My score was 22. More time passed; wanting confirmation, I looked into an Autism evaluation. The fee was $3,000. I dropped my interest and decided to accept my reality from the online test. I've had some very difficult years, especially the last 24 years. I've decided that Narcissists, especially, have radar that perceives my innate vulnerability, or gentleness, or softness. IDK, but I've certainly learned a lot over the years, defending myself and learning to be brave and aggressive enough to shut these types down. I want to warn all autistics and euro-divergents to avoid ultra friendly sorts who take an immediate shine to you. Always spend significant time getting to learn about those whom appear to have a romantic interest in you. Narcissists are more frequent these internet days than ever. Stay safe and always protect yourselves.💖
@@ErikAnbessa I think I have 2 questions for doctors. 1. Do children outgrow Autism? 2. If it is inherited, where did they get it from? (after answer, repeat question 1 and then wait)
“9 out of 10 autistic adults are undiagnosed “. Boy, how true that is! I am retired now, but I can think back to when I was working and think of at least a half dozen people who I knew who were most likely autistic. It’s been a mystery for so long and people just didn’t know anything about autism. I didn’t figure out I was autistic until I was 65. But I’m still “undiagnosed”. 😮
She said 9 out of 10 over the age of 50…not as a whole. A big part of it is because of the changes to the DSM5. Until the DSM5 change, most late diagnosed would not have fit the criteria and therefore would not have been diagnosed when we were younger.
@@GreasergalOG I would guess that most of us late diagnosed people wouldn't have met the criteria until Asperger's was diagnosed in the early to mid 1990's (depending on the country). And even then they usually only diagnosed children. So we were still missed if we were adults by the 1990's.
I'm a 28-year-old black female. I went to the psychiatrist to get help with being assessed for Autism. He told me he didn't care that I might be autistic, then he proceeded & had me admitted into the psychiatric ward for having "self-harm" thoughts. No assessement was done. I was released on the 4th day, and I had to lie throughout the time that I no longer had any negative thoughts so that I could get released. After my release, I started having regular nightmares, a strong feeling of paranoia, etc. I've self-isolated for 3 months now after that traumatic experience at the psychiatric ward. This happened at a public healthcare facility in Hungary. I'm still recovering & I still panic whenever I think about trying to get a formal diagnosis, which I will do in my home country. I discovered that I might be on the spectrum in my 2nd year of studying in Hungary as an international student.
As an autistic male with comorbid major depressive disorder, I have always found inpatient "treatment" extremely stressful, and never beneficial. I'm sorry to hear it was traumatic for you as well. I do hope you find better support. In my experience, it is far too difficult to do so, but it does exist. Best of luck.
I am so sorry you went through this! Another example of trauma to a very sensitive (autistic) person. I hope you feel safe again and will get the kinder more respectful help you deserve soon in the future. ❤
I'm so sorry you went through that -- such horrible behavior on the doctor's part! I hope that you are able to find someone in your home country who can diagnose you and that you are safe to do so.
Even though I worked in mental health and psychology for years, it never 'clicked' that I have autism - I just fitted in well in an academic environment. I met my partner 18 years ago and it was obvious to me straight away, that he is autistic, although he wasn't formally diagnosed. When my mother moved in with us, she said that after she became familiar with my partner's autistic behaviour, she realised that I am exactly the same, and all the 'difficulties' I experienced as a child were due to autism. We have discussed it and she feels bad that I never had any support, and that I suffered so much at school, but it wasn't her fault back in the 60s and 70s. Now I am kinder to myself and allow myself to be introverted, rather than forcing myself to be sociable.
It just wasn't a 'thing' in the 60s and 70s unless the individual was severely impaired. The internet has changed how we understand the world and our relationships
As an Autistic person in America, thank you so much for this lecture! I sent it to my therapist, and shared it online. It's important to get current and research-backed information out, and ESPECIALLY important to emphasize the social aspect of disability in the Autistic space.I may not be that disabled, but I still can't get a job because I don't "fit in" in corporate climes. It's so frustrating! The double-empathy problem is why Autism makes social navigation so difficult!
I so appreciate the subtleties of this presentation. I find it difficult when people say “ isn’t everyone autistic?” Because it sounds like ablest BS. But she breaks it down in a way that I don’t feel like it’s as much a dismissive reaction. My husband and my child are most definitely ASD 1, (and I’m pretty sure both of my parents and sibling ) and I am peeling back all my coping mechanisms, one by one, and realizing that I might be very much on the edge of ASD one myself. My doctor asked me Why do you care? What do you wanna know if you are or not. And I feel like it would tell me if I have to keep working on myself or I need to accept myself and make lots of accommodations. But I think maybe I just need to do the latter, regardless. Because maybe that’s the best path to heal if healing is possible… If improvement is not possible, at least, I’ll be soothing my nervous system and be at my best level of function !
I'm that kid that walked the perimeter of the school playground and the few times I had a friend I would be ridiculously clingy. I don't know if I'm autistic as I'm lacking sensory issues, but I'm over 50 now and acceptance of myself and all my states of being is what I'm learning going down this autism rabbit hole.
That's such a NeuroTypical response to anyone who says they're Autistic, ADHD, Dyspraxic, Neurodivergent. Or they'll say "I've always been a little bit Autistic". 🙄
LONG STORY SHORT: I love and strongly support your idea to focus on nervous system regulation, no matter what else may be helpful or true! ❤ --- I worked with an ADHD coach last year in hopes of improving my executive functioning, and while she did have some helpful logistical suggestions, she also tried to help me manage my expectations for behavior change and reduce my self-judgment about how my brain works naturally. And she *repeatedly* recommended self-acceptance and making accommodations for myself just as I am already. In fact, as I look back at the “big picture” of our work together, it seems that ALL of her suggestions for “improving” my executive function were really just ways of rearranging my life and habits to accommodate the way my brain works, rather than trying to improve my brain to accommodate the way the world works. Her approach made me realize how hard I’ve worked for decades to basically “act neurotypical”…and how much damage it’s done to my self-esteem to have that as my goal. Undoubtedly my “failure” to be someone I’m not helped create a deep sense that there is something fundamentally “wrong” with me that needs constant attempts to fix or at least improve. So please do be kind to yourself and prioritize the regulation of your nervous system through acceptance and accommodations, regardless of whatever else you learn or do as you move forward in life. ❤
I'm not sure if what she says actually implies that, because it may be that there is a "peri-autistic" subset of the population who inherited one autistic trait and not others, but that most people do not fall into this subset.
I have been diagnosed for over 20 years now. I have found that nobody really cares about autism out there, and there is only minimal help. Even the people supposed to understand autism, don't. I have lost all hope.
I attended a rural public school of moderate size in the 70's & 80's that accepted kids of all ability levels. The numbers that we see of Autism today was no surprize to me. If you looked at the behaviors of the quirkier kids as a whole, some who graduated & many didn't, you could see many common traits. I was curious about this subject from a young age because my brother had a sufficient number of symptoms including big tantrums at home until age 12. He graduated and has done well but home life was tough, he was sometimes bullied at school. Our mother was also very probably on the spectrum. Support for parents/families of Autistic kids seems necessary from my pov.
I was 58 when diagnosed with what was later described as Asperger. Care in the Netherlands is excellent. I've taken part in a twelve week training course which helped to explain my younger social difficulties & taught me me how & why to interact with the rest of society. I'm now 70 & have continuing weekly support.
I'm in the US, I was diagnosed in 2003 at 33 years old. In all this time I have found very little help or support for this. I am extremely discouraged and ready to throw in the towel on life. Nobody here cares about autism, and if they care, they still don't understand. And there is no really mental health care system in the US, we are all out of our minds here. There's not enough mentally healthy people here to provide the care.
This lecture was fascinating. I was especially shocked by the part about the autisms and how diverse ASD is genetically. I wish Dr. Happe had mentioned how this impacts the difficulty of diagnosis and the resulting trend of self-identification in adults - but she can't fit everything into an hour talk. Thank you so much to the lecturer and whomever selected her to come and share her insights.
My take on self-identification: The difficulty in diagnosing often doesn't come from it being difficult to see who is autistic. It rather stems from the fact that many diagnosing professionals are not keeping their knowledge up to date so they are not fully aware of the broadened and more complex understanding of autism. Many diagnosed and non-diagnosed autistics spend more time watching videos like this than psychiatrists do, so of course self-identification is wide spread. 🙂
I thought the detail around genetic variability could’ve used a bit more context-or perhaps just the explicit clarification that while there are potentially very many people with relatively less significant genetically autistic attributes, that is not equivalent to the common misconception that “everyone is somewhere on the spectrum,” as the spread of that misinformed idea is incredibly invalidating for autistic people.
@@shapeofsoupwould you mind saying more about the autism-related genetics info this presenter described and the context you wish it had been given? I’m having a hard time processing your sentence about that but I really really want to understand your point. I feel like this issue is somehow important to further understanding myself and my family in relationship to “the autisms,” but I’m not quite grasping it. Thanks in advance if you have time or energy to say more, and either way, you’ve inspired me to find more info on it elsewhere! I suspect I have autism, but I *know* that I have ADHD, and I also hate the notion that “we’re all a little ADHD sometimes, aren’t we?” NO. No we aren’t. 😖
As a scientist I think this is the most informative talk on autism I've seen out there. There is just so much misinformation around in the information age that it staggers me sometimes, even among purported "professionals".
This is so welcomingly comprehensive. Depressingly so, in a way, because this level of understanding of autism is so rare even in the neuroscience field that it apparently requires someone as *incomprehensibly* brilliant as Dr. Happé to comprehend it-not to mention be able to deliver such an eloquent and well-structured lecture on the condition.
I wonder if the poor outcomes with health and aging has more to do with discrimination in the Drs office, Autistic people often have to fight to be believed, or their concerns dismissed. Also we are not encouraged to self care, or rest when our bodies tell us to, ie being called lazy or messy and disorganised. Autistics often have trouble advocating for themselves. That's been my experience anyway.
At one point (as I have ME, which is common amongst autistic women), I had been gaslit and traumatised so much by doctors that i had to take someone as going triggered my CPTSD (also common amongst autistic people).
Its so frustrating seeing "bullying" treated as an atypical trauma. If adults treated a child that way, we'd call it child abuse, and not be surprised at it inducing a trauma response. But when its other children doing the abuse suddenly its not abuse any more and its "just" bullying. Not annoyed at the speaker, but at this general trend to treat abuse as less harmful because of whos doing it.
A similar thing happens to CSA by peers, which is a lot more common than CSA committed by adults. But because because it's two children with similar age the "adults" suddenly become all shy about it and it's hardly even talked about, with anyone, including victims and perpetrators
PDA is still a very new concept, and not widely accepted. In my experience these talks are about a first year university level talk. She might be avoiding bringing it up because it's a complex topic, that hasn't had much research and thus needs a lot of caveats when talking about it. I can respect being wary of putting something out on the internet for laymen that you can't be very sure of.
PDA isn't included in conventional diagnostic systems so it wouldn't be something that has "changed" but something that is still "changing." Because there is little consensus about it among experts it would be hard to provide a clear picture in an overview....I think I have PDA and hope it is further studied and understood.
🛩✈There at 20:55 that photo of child holding airplane model/toy was so very me at that age! 😊And here at 60 years old still holds true. My bedroom has 2 entire shelves of airplane and space rocket books and there is a stack of airplane books on my bed beside pillow 📚 & there are 3 airplane models under construction on the dining room table. 🚂⛵ Boats and trains are also interests. 😁
Here's a suggestion. Are these different facets of the same thing? Attention-deficiency and hyperactivity seem to me to be expressions of Dabrowsky's over-excitability thesis, which turned out to be nothing more than under-performance by teachers,
@@JelMainIt's hard to say for sure due to how heterogenous the symptoms of both ASD and ADHD are, but there is pretty clear evidence of the autistic brain having a different kind of neural hyperconnectivity than ADHD, and not having the specific dopamine cycles that ADHD has. It really looks like they are separate conditions, just with a high comorbidity.
@@distortingjack However, how does that connect to the diagnostic basis? The comorbidity's the sociological consequence of how we're treated as a result.
@@JelMain They are both neurodevelopmental disorders, but they are distinct in pretty much every aspect. To clarify: - ASD has different symptoms to ADHD. Many overlap, but many clearly emphatically do not, and if anything are opposites of each other. - There are clear differences between someone who is only ADHD or only ASD. There doesn't seem to be a smooth gradient in that regard any more that there would be a gradient between non-ADHD and ADHD individuals. - The symptoms in AuDHD are internally perceived as being in conflict with each other. - ASD has a different neurology to ADHD, which has been observed in post-mortem brain examinations. They look different and develop differently in childhood. - ADHD has chemical imbalances that can be managed through medication that are not present in ASD. There is medication that helps ADHD, there is no medication that helps ASD. I think this is critical to point out. In any case, using any diagnostic phenomenology to inform diagnosis is circular reasoning. There is a lot of social complexity in how gender, class, age, childhood trauma, and other things impact diagnosis, but that doesn't mean that ADHD is only a social component of ASD or vice versa. They are as distinct as ASD and intellectual disability are distinct, even if there is a high co-morbidity. Nobody is saying 'autism is actually a facet of intellectual disability, but it's how people are socialised that affects diagnosis'.
So validating! It’s been difficult to be around those who claim to be promoting autism awareness this month while ignoring those of us who are unseen because we don’t fit the of gender or cultural expectations.
This is incredibly validating. I love how many of the co-morbidities of autism are explained and interwoven with the experience of them. Excellent resource, thank you so much for making this free on youtube.
I am 52 and was diagnosed with bipolar in my mid-twenties. My daughter was diagnosed with ADHD and autism at 30, and the more I find out about autism, the more I’m starting to suspect that I was misdiagnosed
Mir wurde früher ebenfalls fälschlicherweise eine bipolare Störung zugeschrieben, mit der ich mich nie identifizieren konnte. Erst im Alter von 50 Jahren erhielt ich durch die Spezialambulanz die Diagnose einer Autismus-Spektrum-Störung. Seitdem hat sich mein Leben deutlich zum Besseren gewendet.
I'm the opposite. I was going through a severe depressive bipolar episode & was misdiagnosed with autism having sought the autism diagnosis out. I'm a mental health prof, I wish people didn't seek out the diagnosis in crisis as many of the depressive symptoms can mimic autism. I'm certainly not socially inept by any stretch of the imagination yet I do have ADHD.
Eating disorders association with autism in feminine people is very important because it significantly changes how to treat and successfully mitigate eating disorders. This is a great informational vided thanks. I hope you speak about monotropism.
I don’t think it’s hard for me to “put myself in someone’s shoes”, but I think understanding where we may be the same and different is challenging. Perhaps this is “the double empathy problem”, because I find that when non autistic people try to predict MY desires, especially within social interaction, they equally fail miserably. I learned the majority of my social skills while studying Spanish. Most Spanish and Latin cultures have a tendency to be more socially motivated and I felt wonderfully guided through the pragmatics of daily interaction. I prefer to speak Spanish during everyday interactions and I have a deeper understanding of it. I would LOVE to see research about this and seeing treatment involving pairing autistic language exchange partners, especially with immigrants. I LOVE speaking with immigrants because we can commiserate regarding the challenges of the culture we are living in and they can enjoy sharing their experiences with things they like and dislike about their own culture. This social interaction can be SO SO valuable to someone who is lonely and feels unappreciated.
Source? That sounds scientifically dubious as repetitive and rigid behaviour continue even when sensory input is limited / reduced. And rigid repetitive behaviour as an autistic trait has complex etiologies which cannot be limited to misophonia or sensory sensitivity. On the other hand sensory overload i impacts emotions and cognitive processes, therefore anxiety can rise which can in turm trigger anxiety relieving behaviors such as rigid behaviours or needing rituals as a self-regulation self-soothing behavior.
No. Two different things. Something being in the wrong place or disordered increases agitation. It varies greatly, individual to individual, but it's cumulative I think. Order and organised patterns make me feel, if I am to give it a name, safer. Isn't this the case for everybody, to some extent, though? It takes some practice to develop the awareness of what happens in the body (as what happens in the body is the easiest way to know what's happening in the brain) to the point where we can actually feel the tiniest lifts we get from fixing or lining something up. Rigidity does minimise the chance of disarray, though. Maybe it's flawed to think of rigidity and repetition as the same thing. What you're talking about in 'repetitive behavior', I think, is the unconscious stimming which I believe might automatically increase with agitation and sensory over-stimulation doesn't necessarily mean agitation. Maybe, theres a fundamental distinction that needs drawing between single sense/single source over stimulation and the chaos of unmodulated multi sense/multi source over stimulation. Stimming, however, is difficult to factor with because the moment one becomes aware of it it tends to stop (unless it's of a certain variety *). And a lot of time the casual observer wont even notice the stimming because it has been driven incognito. For instance - I've got a pre-molar that feels loose, when I push my tongue against it, but isn't loose and only intense scrutiny would notice that I am * harrying it most of the time. Or somebody may be constantly wiggling their toes inside their shoes. It's only the more florid repetitive behaviors that draw attention.
Yes, but not quite. Rigid and repetitive behaviour, and all the various ways of stimming, are autistic ways of handling STRESS. Mutism is likely to be related to handling stress, too. Sensory overload is ONE kind of STRESS. There are many other kinds of stress that affect autistic people, including executive dysfunction, social stressors, medical comorbidities, employment or housing problems, and much more.
I am on older autistic woman, diagnosed late . It was picked up through a professional as I was also talking of how I struggled with my son whom I was quite sure is Aspergers. Turned out I was correct about my son, no surprise there, but it was a relief to understand myself finally. I was hyperlexic as a small child and did incredibly well when I started school so no one thought I had any difficulty. I didn’t mix with other kids, and was often seen as being difficult because I only wanted to do my own thing, so I was a bad child. I had lots of eating problems and was also fiercely monotropic. Being monotropic got me into the most trouble as I was often not present thinking of the things that interested me. This is where I think it is important to be diagnosed as a child it will be helpful to develop into adulthood with less trauma.
I'm 53 and I will FINALLY have an assessment later this year. My health and fitness is incredibly poor, as is my mental heath. I can only say that for me, it's down to poor choices in life that lead me to being so unhealthy. Poor choices down to poor mental health.
A comment for the algorythmn from an interested autistic person. 19:00 I’m grateful for information on the profoundly important study confirming that masking and camouflaging has been scientically proven to have a detrimental effect on our mental health as autistic people.
Thank you so much! I would love to see more cross-cultural studies on autism. Some examples: - How culture affects recognising and living with autism, and especially among immigrant populations in countries with high autism awareness. In some cultures, eye-contact is not respectful, or being precisely on time matters, or food is approached differently. Does high social conformity make it easier (the rules can be stated) or harder (less flexibility)? - How might autism affect experiences of culture shock and cross-cultural adjustment? An autistic person has a life-time experience of not quite fitting in and of learning non-intuitive culturally appropriate behaviour by observation. How does this affect support for autistic and non-autistic people in cross-cultural situations.
Yes, and cultural issues skew research methods and processing results. But we can do research with WEIRD expats, and within the immigrant communities in WEIRD nations (very relevant to educational and medical applications of Autism research), or among international students in universities (who are at least E and R, and have a basic understanding of research processes comparable to the usual subjects, which cuts the number of variables to deal with).
I do think culture will affect the result .In some cultures ,parents ,they do not want to know they have a child with some level of disability ,it is a big stigma .that does not help .my son was diagnosed with autism when he was 2 years old .his father denied it and did not let the child receive the support that he needed .Eventually, we divorced, and I was able to get some therapy to help him .my son now is 20 years old . He is doing better, but still, he has his own challenges .
I so appreciate the term “pure autism”. Maybe it isn’t a term that will take off, but it really really is needed. This is the best talk on autism by a non-autistic person I’ve seen.
What a wonderful, clever and autism respectful presentation! Such a lot of important points explained in a short summary on where we are on understanding autism right now. (Diagnosed at 54 in 2019)
Like many others here, I'm in my 50's and awaiting a first diagnosis. It seems so obvious now that I have the facts and after i have doubted myself for most of my lifetime and been made to feel like a failure by society simply because I was never able to fit in. A diagnosis would be such a relief and allow me to accept my differences and make something of my life before its too late. I'm on a 45 month waiting list now, which is awful, but still a light at the end of the tunnel.
@@MishaSkripach read it she said why. Because it will show to herself that shes not just whatever names people called her, but that she has a condition that means that her behaviour is understandable.
I was actually misdiagnosed with autism having undergone a severe depressive episode at the time I was assessed. Now I need to go through the process of being undiagnosed 😢
@@stampandscrap7494 This is circular logic. Autism label does not make anything understandable, it is simply a term for a collection of behaviours and so cannot explain anything. Her condition is still not understood (maybe it is trauma, Thyroid? lack of vitamins? cowardice? Parenting went srong? Brokenheart?), it is simply goven a lavel to subject her to Mental Health Act for llife. Now, if she misbehaves in any way, clinicians such as social worders, underpais and working class, can deny her freedon for an indefinite period, without a court order.
Thank you very much for a hard work in a autism spectrum research, study and acknowledgement. I believe in a great future without bullying people on a spectrum and with a deep understanding of ASD population 💜
Yes but it isn t the random NT who takes the big decisions. He votes but it s an illusion since ppl who rule are disordered ppl who need control. So the NT if unaware (most) he lives superficial, even if he has a sense of self/core identity & capacity of introspection he just exists adopting family s/society s ideas. That s why they deal w depression etc. They can t use the emotional identity-empathy/conscience or else they d care about wars, group of ppl & would find humanistic solutions in 2024.
Erratum: Asperger's syndrome was not introduced in the mid nineties. It was introduced in the late eighties. It's true that it wasn't introduced to the major diagnostic manuals until later, but people sometimes forget that it wasn't until the mid nineties that those manuals acquired their modern dominance. I should know, I was diagnosed with aspergers in Australia in 1989. (And yeah, I could share some stories about the shortcomings of the diagnostic process and of clinical understanding at the time.)
I am still told my 1958 autism diagnosis is impossible because there were no autistics in existence before the 1980s. The point is that nothing ever existed before a bunch of ancient males spoke it into ink.
The reason to do things on my own rather than together with others is NOT anything socially, it is just that it is damn hard to concentrate on doing anything physically while having a conversation at the same time.
Awesome. Hard to watch. First time through i missed the hardest parts, tuned out. Thought I'd heard it but really I hadnt. My mind filtered it, only allowing a bland vanilla version. Reading some comments showed me id missed some vital bits, thankyou commenters. Second time watching a bit until it whacks me. Stop the video, take notes, and maybe go on. It really is awful to hear. Thankyou Francesca, we need to hear this straight talking truth, and the stats are formidable. Just brilliant. It absolutely IS the periphery stuff that's most damaging. Spot on. I'll keep trying to watch. Many thanks.
As someone who has discovered over the past decade (I'm 35) that I'm autistic, adhd inattentive type, cptsd, bpd, osdd, ocd & also have ME & aps....this explains so soooooo much
@Albinojackrussel it is isn't it 😩 thank you for understanding. It doesn't feel like a single person does sometimes even tho I have a therapist and a long term partner who I have 2 children with
@@allie54774 O, maybe I asked a weird question. I'm just wondering how it must be, because I already have trouble figuring out how things work for me with just inattentive ADHD and autism
I was not only picked on by my classroom peers, but even several teachers had a go at me and one deliberately forced me into a situation which I simply couldn't cope with. I just wanted to evaporate to escape from that one. I was forced to participate as an "actor" in a play put on in front of the entire school by a travelling troupe. I deliberately avoided going up and was then called out from the audience to "play my part" and after suffering the indignity of being on display going up to the stage, was later rubbished for my "performance". I absolutely hated those people for what they did. I was beginning to learn that being on my own to enjoy my passions alone was the only way I could exist with any degree of security in an alien world. And that was just one of a number of indignities I suffered along the way. To this day I have never attended a reunion of any sort. Running away and staying away was my only defence. I never wanted or want to see those people again.
I feel sorry for what you had to go through. It reminds me of something I saw a year ago when attending a gymnastics show of my daughter's friend. There was a young boy who absolutely felt uncomfortable going on stage. He most likely was on the spectrum. They nudged him to perform his gymnastics routine. You could tell he didn't want to be out there. And then when he was done, everyone cheered. Most people in the audience ignored his discomfort and applauded him for his "courage", they mistook his overwhelm with overcoming anxiety I guess. It's sad to see how people push others to do things they normally would avoid if they had a choice. TMI am AuDHD myself. And I did perform in front of people earlier in life as an adult, but only because it was a special interest of mine to "act". Not because I was pushed on stage as a kid by adults around me.
THANK YOU! 💛I wished for so long there was a lecture I could share with family and friends highlighting the perspective shifts and recent research revealing misconceptions and incomplete data around autism. I hope this lecture will be shared widely and appreciated. Stay curious
Things don't work this way: 1. "Asperger" is no longer valid (since 2013, it is now just called Autism grade 1 (there are 3 grades depending on the amount of support the person needs) 2. Someone doesn't "have" autism, they ARE autistic! 3. The "Self-Diagnose" is not valid at all, if you might think your partner is autistic, go get some visits and a proper diagnose!
@@nxthinelseWhile you are technically correct on the first two points, don't need to be self-righteous about people being on a path to more knowledge and understanding. On the third point, autism self-diagnosis is actually very much valid, for many reasons including the fact that autistic self-diagnosis is actually highly accurate. The issue here is diagnosing another person, which is more problematic. However, in some people it's so abundantly clear, the advantages of being aware of an undiagnosed person's probable autism greatly outweigh the ignorance of it.
@@birgittnlilli9726 I needed a professional diagnosis myself because I would doubt myself but I think that self diagnosis is valid if someone does a lot of research. Not everyone has the money to get an assessment. If I didn't get stimulus checks during Covid I might not be diagnosed. I am lucky that I was able to afford the assessment.
True, if you have an extra $3,000 laying around! Otherwise, free online tests used to be available. The test I took had 35 questions. A score of 6 might be questionable, but not a score of 22. Moreover, my father rarely spoke and did nothing except golf or play chess with male friends. I think these issues resulted in my estranged brother, too.@@birgittnlilli9726
This should be seen by a lot more people. I’ve had a lot of incidents where I tell a “friend” of my traumatic experiences (recent or not) and them just responding with “oh I thought something bad happened to you” or laughing at me crying and invalidating my feelings or telling me I’m too sensitive. Of course that’s gonna teach you not to trust friends anymore over time
I do wonder what's the validity of creating distinct diagnostic labels to distinguish cases of Autism based on the presence or absence of language impairments and intellectual disability. This seems to be really big point of contention between parents of high support needs children versus the autism advocacy movement (and even within the movement, depending on where in the support needs variability the specific people have). I really like the clarification that autistic individuals can and do shift in their presentation and support needs throughout their lives, based on a multitude of factors, and how people who have the high support needs presentations can grow up to adolescents and adults who would clearly fit the profile of what used to be called Asperger's. In my own reading by comparing the DSM-IV TR with the DSM-5's respective sections on Pervasive Developmental Disorders versus Autism Spectrum Disorder, there's some stuff that becomes clear to me: - While Asperger's was correctly described as a presentation of autism in which language impairment and intellectual disability doesn't occur, the diagnostic criteria for the classical presentation of autism did not specify a requirement for the language and/or intellectual disability elements. This means the Asperger's diagnosis was inconsistently applied, because many cases in which the language impairment and intellectual disability occurred were being diagnosed as Autism rather than Asperger's. - Asperger's definition of the language development milestones was really strict, meaning that cases in which slight delays in language (ex. starting to speak in ages 3-5, as opposed to speaking in ages 1-3 as in typical development) ended up as Autism rather than Asperger's, even though the cases looked indistinguishable from Asperger's once reaching the school age. - The DSM-IV and its predecessors erroneously specified that, while symptoms of inattention and hyperactivity were often present in Autism, and especially Asperger's, the clinician should not diagnose ADHD if signs of any pervasive developmental disorder were present, and vice-versa. Today we know this is a really blatant error in characterizing both ADHD and Autism. The DSM-IV also mentioned how it was also known that cases of Asperger's were very often 'misdiagnosed' as ADHD at first--the ADHD-ASD co-morbidity was in plain sight all this time! - Given that many, but not all, of the support needs of autism are related to the language and intellectual disability impairments, I think a more accurate characterization of what used to be called Asperger's syndrome would be Level 1-2 support needs Autism with no language nor intellectual impairments, more interest in social interactions (despite the social communication difficulties) and co-morbid with ADHD. This is a very close match to what the neurodiversity advocacy movement nowadays terms the AuDHD presentation. - The other really problematic diagnosis is what's called the Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). This was a dumpster for the cases in which the other PDD diagnoses couldn't be fully justified, often due to an apparent shift from the early signs of Autism into a seemingly normal development. The real tragedy is this diagnosis often lacked proper support options. - Meanwhile, while the DSM-5 did correct these issues with the mess of Pervasive Developmental Disorder diagnoses, it still has some glaring problems. The lack of of emotional dysregulation symptoms and extreme reactions at certain types of distress (ex. meltdowns, shutdowns, emotional lability, low frustration tolerance) as diagnostic criteria to check for, means that Autism continues being misdiagnosed as other disorders characterized by the emotional dysregulation and mood extremes. Stuff like Borderline Personality Disorder and, strangely enough, Bipolar Disorder, end up being erroneous diagnoses that end up interfering with actually acknowledging and addressing these presentations of Autism. This aspect is especially problematic for female presentations of Autism, as the emotional problems and social camouflaging / masking behaviors are far more significant. - An emerging area of interest is how Complex Post-Traumatic Stress Disorder (C-PTSD) can cause neurological dysregulation. The sum of repeated exposure to adverse life experiences and stressors can cause and exacerbate various symptoms that are characteristic of both ASD and ADHD: sensory problems, attention, focus, task motivation / initiation / sustained effort, emotional dysregulation, social communication, difficulty with transitions and unexpected changes, situational (or even general) anxiety, impaired interoception, alexithymia, and so on. This causes difficulties for differential diagnosis, with the added complication of C-PTSD often showing up along with neurodevelopmental disorders. - While I know there's people who mention that autism diagnosis are of little value once out of formal education, it's also true that ASD also comes with a multitude of atypical physiological reactions, to stuff like food, temperature and medications. Just knowing the presence of ASD in the person should be helpful in both finding ways to mitigate environmental stressors and prepare clinicians to properly approach pharmacological and dietary treatments with the awareness to prepare for negative responses and nonresponsiveness to the medications. The other area of interest is the use of more experimental drugs to treat issues characteristic of autism, with promise shown by ketamine, psychedelic compounds, and medical cannabis.
@eScential On mental health sublects like this? Not really. I am, however, am avid reader and researcher on the sibject for personal reasons. I suspect both ADHD and autism in myself, between personal difficulties over the years, reaching a critical point of distress. I'm currently awaiting formal evaluations for both of those conditions.
My partner comes from a family with a history of autism but is not herself autistic. She does however have C-PTSD and that means we share some behaviours. It may also be the case according to this video that she only has a limited sub set of autistic traits inherited and then C-PTSD on top of that.
@@wiegraf9009yes I think I have some autistic features albeit I'm not socially inept which would be the DSM Vs defining criteria (as much as a disagree with the biomedical model of autism). I think we'll eventually see a more inclusive criteria as more models are incorporated & we move away from the biomedical model.
The beginnings of feeling VALUABLE and VALID now, with emdr therapy, after 66 years on Earth, is so awesome, but more than slightly overwhelming (with joy) at times :) Thank you and colleagues for your terrific work in this area.
I've noticed that Autistic people seem not to be able to visualise themselves into future situations. Into an occupation, new job, new task etc.. This may contribute to anxiety. Shadowing people, practice runs, a buddy system, role playing, etc. could help with this. Empathy, loyalty, truth certainly seem to be traits. Breeches of these certainly throws Autistic people into circular thoughts, trying to resolve the whys.. Finally, processing speed may be very much slower. This can certainly be accommodated for by writing instructions, slowing down instruction giving, ensurung breaks are worked into work, etc. / given time to settle down before starting work, school, etc.. a nice cup of tea etc.. Autistic people seem to see things in steps. They must go through each step. They can't easily see through to the end / big picture.. Anticipating issues / scenarios with them can help to reduce trauma. Also, educating the public, schools, students, colleagues, employers.
A beautiful mind indeed ❤ Now to share this with the mental health professionals in the States who seem to still be WAY behind on info and dismantling biases.....
well said.. thank you! i wish i would have had you around while growing up. im 65 now. life had been confusing. school was hard, yet i love to learn!! i still deal with "life" through different eyes.. several abuses. strange how it all started within the home your raised. You have great understanding of how this world seems. Thank you!!! hugs
As an autistic person, this was a fantastic watch! Extremely insightful and I felt the truth and wisdom in it. Edit: I think something that should be the most emphasised in education about autism is about autonomy and against infantilisation of autistic people. In my opinion, everyone has a reason for doing something. An autistic person that is damaging property may be doing it to seek catharsis in violence, not because they don't know what they're doing or that they are just causing destruction for the sake of it.
Thank you for such a thoughtful, respectful and considerate explanation of autism as it is currently being understood. Definitely one of the most encompassing, well-rounded descriptions of autistic lived-experiences. 🙏🏻
This new definition is so broad that it now includes most of the people I know. It is about time researchers started trying to work out which pathogens are responsible for diseases that affect the brain. The first step in the right direction would be to narrow the definition of disorders with unknown causes.
Thank you, Professor Happe! Your work is so important, and your personal warmth has given you a special gift of making it accessible to a wide audience. You are a powerful advocate for people with autism.
Yes and also that many women self-select out of the medical system because of past trauma they experienced in it. I've seen it happen so many times. This would be expected among female autistics given the high incidence of PTSD shown in the video (women receive neglectful or directly abusive treatment, autistic women would be more likely to experience and sustain PTSD from this kind of experience, therefore autistic women would be more avoidant of the medical system).
The Judge Rotenberg Center (JRC) is an institution in Massachusetts. People with intellectual and developmental disabilities (I/DD), mental health disabilities, and learning disabilities live there. Both kids and adults live at the JRC. Many autistic people live there. Some people at the JRC are forced to wear an electric shock device. This device is used to punish the person wearing it. The device punishes people by giving them electric shocks. These electric shocks are very painful. The JRC shocks people for small things like refusing to take off their jackets or stimming. from ASAN - Autistic Self Advocacy Network 3-26-24
@@turquoisemama33 you are welcome. The ASAN website and RUclips channel has info on how to protest. there is a letter that we can send electronically by may 28th, 2024 which may help ban use of electric shock.
As someone who has been diagnosed with Asperger's on his 58th,this is interesting. Born in 1958 this declares (in part anyway) why my Asperger's stayed under the radar for so long. Too bad that populair conceptions of autism stay behind. Although there is a trend to more accurately depicting autism, but in my view this trend is still to un-influential.
Same here. I was diagnosed with Asperger's a few years ago (in my early 50's) a few years after my son was diagnosed with autism, anxiety and rigidity. It did not really come as a surprise as I could see some of the things in my son but it was almost a relief.
I am autistic, and I am very clumsy, and I can see 4 dimensions and imagine amazing 3d worlds. If you are autistic, consider checking out the metaverse. Things are about to get much better for us.
Thank you professor Happé for providing this update about Autism Spectrum. We are no longer saying Disorder. Thank you for mentioning that we grow into autistic adults. We ask that everyone please don't only mention children when discussing autism.
Dr Happé here has elucidated so clearly so many aspects of autism that have previously been muddled or misunderstood. This was such a wonderfully clear presentation. I particularly found value in the idea that the three components - social, communication, restrictive repetitive behaviors - are separate genetically. That when they all three come together they constitute autism, but may have been inherited from separate non-autistic individuals who had challenges in only one or two of these areas. This makes so much sense and seems very consistent with life experience. I also appreciated her careful response to the nuances of ABA therapy, among other things. As the mother of an autistic child with intellectual disability and severe challenges, and also suspecting I may be level one autistic myself, I appreciate Dr Happé's addressing both of these perspectives, and that parents of severely autistic children need different resources and representation than so-called high functioning autistic individuals. I found great value in the separation of the autism from the adverse symptoms and experiences that may benefit from a "cure". I don't want myself or my son to be cured of autism, but do want and need support for difficult things such as anxiety that accompany the autism. Very enlightening! Thank you!
Rising above the label of autism is also important. We are unique and different from others even within the autistic spectrum, something we are still learning every day not to be the same as others - we are not all the same, Published Writer I wrote a book during the pandemic - so chuffed with my achomolisments
A fascinating lecture. Explains why I was just that “weird girl” and not autistic, because I would not have fit the diagnostics until I was near retirement. 😂 Ah, well. Now I can organize my life to deal with recognizable issues without having to explain it to others (awkward!)
This is fantastic! Thankyou for sharing the lecture:) i found the Information on the dimensional approach to autism as well as on the many „autisms“ really interesting. I am a 25 year old female and I am in the process of getting an adhd diagnosis (the diagnosis is basically confirmed) and i have also been struggeling with different types of ocd from a young age. The last years i’ve been researching autism and many traits / experiences relating to autism click but I am pretty certain that i don‘t fit the diagnosis fully/ categorically (on tests i always score just about on the cut-off) So i often find myself in this uncomfortable gray area of having elevated Autistic traits and relating to autistic people (often more so than to neurotypical ways of thinking and processing) but also not fitting the full diagnostic picture, it makes it more difficult for me to understand my identity and validate my struggles. I really struggle to accept this gray area for myself but your lecture helped me feel more valid! Great and up-to-date Information! Haven‘t found many Talks Like this before:) i just wish that half the medical professionals would have this knowledge!
I have ADHD and am also autistic, and my mom is autistic but doesn't have ADHD (I inherited the ADHD from my father). There are so many struggles I have with ADHD she absolutely cannot comprehend and it has always made our relationship difficult. I feel your pain.
Thank you so much for your reply and please accept a big internet hug🫶🏼 also little update: i am finally medicated for my adhd and interestingly ever since taking the medication i can see autistic traits shine through more strongly. The adhd and autism combo (in my case: the potential, self-suspected combo) is a funny one. There should be so much more research on AuDHD
Thank you for this lecture. I am currently waiting to see if i have a chromosome syndrome to explain my autism. I am glad to hear you refer to autisms plural. My particular type of autism seems to bare little resemblance to others these days and i feel isolated by that. I am so glad you would likr to investigate autism and Motor development problems. Indeed for myself its a very physical issue. All the best to you.
I am a woman who asked my doctor for an assessment When going through the test I told the practitioner that I also have an eating disorder and there's a strong correlation between ASD and ED in women. She said but we cannot look at it that way and dismissed me and told me you do not look autistic but after the assessment I got diagnosed
Regarding the part of the lecture that is about trauma and PTSD, it's unfortunately quite common to confuse trauma and so-called traumatic events. Trauma means "wound", "damage" and similar kinds of consequences of an event or repeated events that build on such damage. An event is traumatic if it causes damage, causes trauma, an event is not in itself a trauma. Best is to not call an event "traumatic" because it's not an inherent property of an event, it's a possible effect of one. If we understand this, then we can also understand that the listed examples of events in the PTSD diagnosis criterias are just that, examples. If we understand that people are individuals, some more so than others (for example those that might receieve an autistic diagnosis), then we'll also easier understand that any event or sets of events can cause PTSD. The PTSD assessment instruments need to be updated to reflect this reality. Personally I question the purpose of psychiatric diagnoses outside of research. I'd prefer a focus on help needs of the individual rather than labelling and categorizing people. I certainly question labelling people as disordered, when so often it's more a matter of a fish trying to survive on land, a fish out of water, rather than a disordered fish.
The "mistake" that people make by claiming "autism is on the rise" is that when a 70 year old person gets diagnosed, it actually means that 70 year ago, the person was already autistic without knowing... so they should actually correct for the age back in time, but they never do.
Indeed. Autism is heritable, actually when the child got diagnosed it incidently revealed many additional cases in the adults.
Definitely. For 63 years the statistics were wrong, because I wasn't included!
You and some of your elders, yes.
@@EcoHamletsUK Yeah, same for me, 57 years!
No because some of us who’ve actually studied the increase in Diagnosis have accounted for this variability and yet, we still see a significant increase.
The problem in many arguments is one side doesn’t familiarise themselves with the other sides arguments, or worse only addresses the arguments they believe are easily undermined.
This is what’s happening here
Even the speaker admits here “ this is a likely explanation” and “ I can’t prove this”, in short she’s not addressing the data that shows a legitimate increase.
As a woman who finally figured out at 61 that I was autistic, this is huge. The impacts of living a life without the supports I desperately needed has gone beyond me and to the next generation with my children. This is so important for people to understand. I have to fight for the legitimacy of my self-diagnosis every time I talk about it to a medical professional, because most of them have such outdated information.
As a male, I was much the same. I'd encountered The Tavistock Clinic as a lad, during the extension of IQ testing to kids, and they'd banned me from ever testing again - it's in the maths. Eventually what I was capable of became undeniable, so they tested me anyway, and the truth came out: an IQ in the mid-160s at peak, doing the freakish, consistently. It did its thing during the testing, so they added hyperperception, and the Cabinet Office pitched in, looking for help in the weirdos and misfits.
My immediate reply was revealing, I asked for academic studies and came up empty. This was 2015. So I started looking for myself, and found the same thing. DSM-5 was clearly wrong, and when I looked at the history of the diagnosis, came up with narcissism in the diagnosticians. You can't understand me? Communications is a two-way street. Academic specialists in the subject can. I'm obsessive? I'm researching something new and important. I have to be careful. I melt down? You would too if you were as traumatised as me. Dabrowsky's overexcitability thesis amounts to the same thing: the Tavistock Clinic reported I had the GK of a 14 year old, aged 8, by 11 I was dealing at par with a Russian Oligarch, and 14 I left my first perpetual mark on the world, placing my surname at the heart of almost all computer code - a poor joke made a lot of sense. So I'd come to my own conclusions, and teaching-as-indoctrination was futile.
In 2020, one of my authorities in the study I was talking about moved to Head Yale's new Genius School, so he referred me to his thesis, The Hidden Habits of Genius, and I replied with a mantra study massively extending some of his own work. He agrees, I probably qualify.
That created an alter-ego, and as I'm not schizoid, I had to go through my persona looking for the core truth. That left me in grief for what wasn't, added to your comments about lack of support. I'm actually working the other way, therefore, but one thing is clear: only one ASD patient has been listened to, Temple Gradin, and they've reverted to talking past us. For the last hundred years, all the work's gone into low functionality, and they've discovered something: you can't make a silk purse out of a sow's ear. In the mean time, they've trashed their best.
I can really identify with what you've written here, in all aspects. I'll focus on how medical professionals react to a self-diagnosis, as that's a primary issue in my life right now.
My experience is, medical professionals generally want to be *the expert* and get threatened when a patient uses their intelligence and abilities to figure out that they have autism. There's a hefty dose of authoritarianism in that system. I will talk with the medprof in a sincere attempt to have a dialogue and to collaborate, but I also won't hesitate to fire a medprof who proves their priority is "being the authority" - who won't collaborate, and who doesn't listen.
Best,
Lynn
@@lynncohen1297 Absolutely. But it's worse than that, they present a different identity to your own so you have a grieving process to cope with as you assassinate the false alter ego. First do no harm.
@@lynncohen1297 I've had better luck generally with Nurse Practitioners than MDs, and generally better with women than men, but it can still be tough to dislodge the things people think they know.
I'm waiting to be assesed at 41. One of my daughters recieved a diagnosis 3 days ago and the results for my other girl are about to come back.
Access to information, via RUclips, Tiktok, etc., is why so many of us are realizing that we were missed. Armed with this new knowledge, life suddenly makes sense.
Tik tok is not a reliable source of information about autism they did a study and found that 30% of tik tok information about autism is accurate.
"Armed with this new knowledge, life suddenly makes sense". Exactly. Really beautifully written ♥️
Exactly.
Yup. I doubt that many of these studies are taking social media into account because a self diagnosis from discovering information that fits you to a T and explains so many things, isn't scientifically verified by an "expert".
And, from a lot of what i've read, an unfortunate number of "experts" have no freaking clue what they are talking about or what to look for.
“We were missed” brought a tear to my eye. I can’t help but feel angry about my own neurodiversity, rationalised by myself in my late 30s. I feel overlooked, not missed 😢
Almost 40, untreated/ undiagnosed- just discovering my neurodiversity 😭 it was never just anxiety/depression
Yes. Now seeing more and more of us that were "missed" as children. I am now 49 and discovered I am asd about 3 years ago.
Same here, but much older. I was in my mid 40s when I spontaneously took an online IQ test. I was shocked! No, I'm not genius level, but far from average. My parents shaped me to be a housewife and mother. 10 years after the IQ test, I wondered if I could be autistic, which could have influenced my parent's perception of me. I took another online test, this time for autism - there were 35 questions, as I recall. If the resulting score was over 5, it was likely that autism was present. My score was 22.
More time passed; wanting confirmation, I looked into an Autism evaluation. The fee was $3,000. I dropped my interest and decided to accept my reality from the online test.
I've had some very difficult years, especially the last 24 years. I've decided that Narcissists, especially, have radar that perceives my innate vulnerability, or gentleness, or softness. IDK, but I've certainly learned a lot over the years, defending myself and learning to be brave and aggressive enough to shut these types down.
I want to warn all autistics and euro-divergents to avoid ultra friendly sorts who take an immediate shine to you. Always spend significant time getting to learn about those whom appear to have a romantic interest in you.
Narcissists are more frequent these internet days than ever. Stay safe and always protect yourselves.💖
@@ErikAnbessa I think I have 2 questions for doctors. 1. Do children outgrow Autism? 2. If it is inherited, where did they get it from? (after answer, repeat question 1 and then wait)
@@ErikAnbessaI was 59 before I even considered I could be autistic. And got tested and confirmed.
True they were just underlying comorbidities that exist along with it and women were denied supports for so long
“9 out of 10 autistic adults are undiagnosed “. Boy, how true that is! I am retired now, but I can think back to when I was working and think of at least a half dozen people who I knew who were most likely autistic. It’s been a mystery for so long and people just didn’t know anything about autism. I didn’t figure out I was autistic until I was 65. But I’m still “undiagnosed”. 😮
@Letsthinkaboutit-mb7nn Why is it, though, that they've not taken her basic point to ask us?
She said 9 out of 10 over the age of 50…not as a whole. A big part of it is because of the changes to the DSM5.
Until the DSM5 change, most late diagnosed would not have fit the criteria and therefore would not have been diagnosed when we were younger.
@@GreasergalOG I would guess that most of us late diagnosed people wouldn't have met the criteria until Asperger's was diagnosed in the early to mid 1990's (depending on the country). And even then they usually only diagnosed children. So we were still missed if we were adults by the 1990's.
I'm a 28-year-old black female. I went to the psychiatrist to get help with being assessed for Autism. He told me he didn't care that I might be autistic, then he proceeded & had me admitted into the psychiatric ward for having "self-harm" thoughts. No assessement was done. I was released on the 4th day, and I had to lie throughout the time that I no longer had any negative thoughts so that I could get released. After my release, I started having regular nightmares, a strong feeling of paranoia, etc. I've self-isolated for 3 months now after that traumatic experience at the psychiatric ward. This happened at a public healthcare facility in Hungary. I'm still recovering & I still panic whenever I think about trying to get a formal diagnosis, which I will do in my home country. I discovered that I might be on the spectrum in my 2nd year of studying in Hungary as an international student.
As an autistic male with comorbid major depressive disorder, I have always found inpatient "treatment" extremely stressful, and never beneficial. I'm sorry to hear it was traumatic for you as well.
I do hope you find better support. In my experience, it is far too difficult to do so, but it does exist.
Best of luck.
Wow! I am so sorry. What a horrid experience
😢❤
I am so sorry you went through this! Another example of trauma to a very sensitive (autistic) person. I hope you feel safe again and will get the kinder more respectful help you deserve soon in the future. ❤
I'm so sorry you went through that -- such horrible behavior on the doctor's part! I hope that you are able to find someone in your home country who can diagnose you and that you are safe to do so.
Even though I worked in mental health and psychology for years, it never 'clicked' that I have autism - I just fitted in well in an academic environment. I met my partner 18 years ago and it was obvious to me straight away, that he is autistic, although he wasn't formally diagnosed. When my mother moved in with us, she said that after she became familiar with my partner's autistic behaviour, she realised that I am exactly the same, and all the 'difficulties' I experienced as a child were due to autism. We have discussed it and she feels bad that I never had any support, and that I suffered so much at school, but it wasn't her fault back in the 60s and 70s. Now I am kinder to myself and allow myself to be introverted, rather than forcing myself to be sociable.
It just wasn't a 'thing' in the 60s and 70s unless the individual was severely impaired. The internet has changed how we understand the world and our relationships
I got diagnosed at 30, and it's made my life much more prosperous, peaceful, and clear.
I was diagnosed at 33,
a little over 20 years ago,
it really has not done much at all for me,
Nobody even know show to treat adults with autism,
specially older adults.
As an Autistic person in America, thank you so much for this lecture! I sent it to my therapist, and shared it online. It's important to get current and research-backed information out, and ESPECIALLY important to emphasize the social aspect of disability in the Autistic space.I may not be that disabled, but I still can't get a job because I don't "fit in" in corporate climes. It's so frustrating! The double-empathy problem is why Autism makes social navigation so difficult!
I so appreciate the subtleties of this presentation. I find it difficult when people say “ isn’t everyone autistic?” Because it sounds like ablest BS. But she breaks it down in a way that I don’t feel like it’s as much a dismissive reaction.
My husband and my child are most definitely ASD 1, (and I’m pretty sure both of my parents and sibling ) and I am peeling back all my coping mechanisms, one by one, and realizing that I might be very much on the edge of ASD one myself. My doctor asked me Why do you care? What do you wanna know if you are or not. And I feel like it would tell me if I have to keep working on myself or I need to accept myself and make lots of accommodations. But I think maybe I just need to do the latter, regardless. Because maybe that’s the best path to heal if healing is possible…
If improvement is not possible, at least, I’ll be soothing my nervous system and be at my best level of function !
I'm that kid that walked the perimeter of the school playground and the few times I had a friend I would be ridiculously clingy. I don't know if I'm autistic as I'm lacking sensory issues, but I'm over 50 now and acceptance of myself and all my states of being is what I'm learning going down this autism rabbit hole.
That's such a NeuroTypical response to anyone who says they're Autistic, ADHD, Dyspraxic, Neurodivergent. Or they'll say "I've always been a little bit Autistic". 🙄
LONG STORY SHORT: I love and strongly support your idea to focus on nervous system regulation, no matter what else may be helpful or true! ❤
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I worked with an ADHD coach last year in hopes of improving my executive functioning, and while she did have some helpful logistical suggestions, she also tried to help me manage my expectations for behavior change and reduce my self-judgment about how my brain works naturally. And she *repeatedly* recommended self-acceptance and making accommodations for myself just as I am already.
In fact, as I look back at the “big picture” of our work together, it seems that ALL of her suggestions for “improving” my executive function were really just ways of rearranging my life and habits to accommodate the way my brain works, rather than trying to improve my brain to accommodate the way the world works.
Her approach made me realize how hard I’ve worked for decades to basically “act neurotypical”…and how much damage it’s done to my self-esteem to have that as my goal. Undoubtedly my “failure” to be someone I’m not helped create a deep sense that there is something fundamentally “wrong” with me that needs constant attempts to fix or at least improve. So please do be kind to yourself and prioritize the regulation of your nervous system through acceptance and accommodations, regardless of whatever else you learn or do as you move forward in life. ❤
I'm not sure if what she says actually implies that, because it may be that there is a "peri-autistic" subset of the population who inherited one autistic trait and not others, but that most people do not fall into this subset.
I have been diagnosed for over 20 years now. I have found that nobody really cares about autism out there, and there is only minimal help. Even the people supposed to understand autism, don't. I have lost all hope.
I attended a rural public school of moderate size in the 70's & 80's that accepted kids of all ability levels. The numbers that we see of Autism today was no surprize to me. If you looked at the behaviors of the quirkier kids as a whole, some who graduated & many didn't, you could see many common traits. I was curious about this subject from a young age because my brother had a sufficient number of symptoms including big tantrums at home until age 12. He graduated and has done well but home life was tough, he was sometimes bullied at school. Our mother was also very probably on the spectrum. Support for parents/families of Autistic kids seems necessary from my pov.
I was 58 when diagnosed with what was later described as Asperger. Care in the Netherlands is excellent. I've taken part in a twelve week training course which helped to explain my younger social difficulties & taught me me how & why to interact with the rest of society. I'm now 70 & have continuing weekly support.
I'm in the US, I was diagnosed in 2003 at 33 years old. In all this time I have found very little help or support for this. I am extremely discouraged and ready to throw in the towel on life. Nobody here cares about autism, and if they care, they still don't understand. And there is no really mental health care system in the US, we are all out of our minds here. There's not enough mentally healthy people here to provide the care.
This lecture was fascinating. I was especially shocked by the part about the autisms and how diverse ASD is genetically. I wish Dr. Happe had mentioned how this impacts the difficulty of diagnosis and the resulting trend of self-identification in adults - but she can't fit everything into an hour talk.
Thank you so much to the lecturer and whomever selected her to come and share her insights.
My take on self-identification: The difficulty in diagnosing often doesn't come from it being difficult to see who is autistic. It rather stems from the fact that many diagnosing professionals are not keeping their knowledge up to date so they are not fully aware of the broadened and more complex understanding of autism. Many diagnosed and non-diagnosed autistics spend more time watching videos like this than psychiatrists do, so of course self-identification is wide spread. 🙂
Many self diagnosed people go on to get a professional assessment. Maybe if it were cheaper more people would not self diagnose.
I thought the detail around genetic variability could’ve used a bit more context-or perhaps just the explicit clarification that while there are potentially very many people with relatively less significant genetically autistic attributes, that is not equivalent to the common misconception that “everyone is somewhere on the spectrum,” as the spread of that misinformed idea is incredibly invalidating for autistic people.
@@shapeofsoupthat's a really helpful clarification, thank you.
@@shapeofsoupwould you mind saying more about the autism-related genetics info this presenter described and the context you wish it had been given?
I’m having a hard time processing your sentence about that but I really really want to understand your point. I feel like this issue is somehow important to further understanding myself and my family in relationship to “the autisms,” but I’m not quite grasping it.
Thanks in advance if you have time or energy to say more, and either way, you’ve inspired me to find more info on it elsewhere! I suspect I have autism, but I *know* that I have ADHD, and I also hate the notion that “we’re all a little ADHD sometimes, aren’t we?” NO. No we aren’t. 😖
As a scientist I think this is the most informative talk on autism I've seen out there. There is just so much misinformation around in the information age that it staggers me sometimes, even among purported "professionals".
Dr. Bernadette Grosjean also has some great talks on YT in a similar vein.
This is so welcomingly comprehensive. Depressingly so, in a way, because this level of understanding of autism is so rare even in the neuroscience field that it apparently requires someone as *incomprehensibly* brilliant as Dr. Happé to comprehend it-not to mention be able to deliver such an eloquent and well-structured lecture on the condition.
I(t always will be impossible to comprehend, because it's so complicated.
I wonder if the poor outcomes with health and aging has more to do with discrimination in the Drs office, Autistic people often have to fight to be believed, or their concerns dismissed. Also we are not encouraged to self care, or rest when our bodies tell us to, ie being called lazy or messy and disorganised. Autistics often have trouble advocating for themselves. That's been my experience anyway.
If you can, bring a friend, family member or even a case manager. I take my boyfriend with me and the doctors often treat me better.
@Catlily5 I don't have a case Manager, or a boyfriend, but I agree, that would help.
Mine to😮
At one point (as I have ME, which is common amongst autistic women), I had been gaslit and traumatised so much by doctors that i had to take someone as going triggered my CPTSD (also common amongst autistic people).
Same...
Its so frustrating seeing "bullying" treated as an atypical trauma. If adults treated a child that way, we'd call it child abuse, and not be surprised at it inducing a trauma response. But when its other children doing the abuse suddenly its not abuse any more and its "just" bullying. Not annoyed at the speaker, but at this general trend to treat abuse as less harmful because of whos doing it.
A similar thing happens to CSA by peers, which is a lot more common than CSA committed by adults.
But because because it's two children with similar age the "adults" suddenly become all shy about it and it's hardly even talked about, with anyone, including victims and perpetrators
@@yinafrentz some children figure those things out all by themselves
Queen. I'm autistic myself and I absolutely loved how you handled a lot of the issues regarding ABA and ableism directed towards autistic people.
Diagnosed at 57, we are catching up, but still have a way to go getting everyone the diagnosis they need to understand themselves.
It would be helpful to include PDA in talking of social problems
Yeah, it's such a strong but in some ways contradictory profile
Yes🎉
PDA is still a very new concept, and not widely accepted. In my experience these talks are about a first year university level talk. She might be avoiding bringing it up because it's a complex topic, that hasn't had much research and thus needs a lot of caveats when talking about it. I can respect being wary of putting something out on the internet for laymen that you can't be very sure of.
@@Albinojackrussel autistamatic has a great video about it. When no doesn't mean no autism and PDA. Look it up.
PDA isn't included in conventional diagnostic systems so it wouldn't be something that has "changed" but something that is still "changing." Because there is little consensus about it among experts it would be hard to provide a clear picture in an overview....I think I have PDA and hope it is further studied and understood.
🛩✈There at 20:55 that photo of child holding airplane model/toy was so very me at that age! 😊And here at 60 years old still holds true. My bedroom has 2 entire shelves of airplane and space rocket books and there is a stack of airplane books on my bed beside pillow 📚 & there are 3 airplane models under construction on the dining room table. 🚂⛵ Boats and trains are also interests. 😁
We have plenty of information on autism. We need research on AuDHD (autism with ADHD), because that’s why so many of us were overlooked.
Yes!
Here's a suggestion. Are these different facets of the same thing? Attention-deficiency and hyperactivity seem to me to be expressions of Dabrowsky's over-excitability thesis, which turned out to be nothing more than under-performance by teachers,
@@JelMainIt's hard to say for sure due to how heterogenous the symptoms of both ASD and ADHD are, but there is pretty clear evidence of the autistic brain having a different kind of neural hyperconnectivity than ADHD, and not having the specific dopamine cycles that ADHD has. It really looks like they are separate conditions, just with a high comorbidity.
@@distortingjack However, how does that connect to the diagnostic basis? The comorbidity's the sociological consequence of how we're treated as a result.
@@JelMain They are both neurodevelopmental disorders, but they are distinct in pretty much every aspect. To clarify:
- ASD has different symptoms to ADHD. Many overlap, but many clearly emphatically do not, and if anything are opposites of each other.
- There are clear differences between someone who is only ADHD or only ASD. There doesn't seem to be a smooth gradient in that regard any more that there would be a gradient between non-ADHD and ADHD individuals.
- The symptoms in AuDHD are internally perceived as being in conflict with each other.
- ASD has a different neurology to ADHD, which has been observed in post-mortem brain examinations. They look different and develop differently in childhood.
- ADHD has chemical imbalances that can be managed through medication that are not present in ASD. There is medication that helps ADHD, there is no medication that helps ASD. I think this is critical to point out.
In any case, using any diagnostic phenomenology to inform diagnosis is circular reasoning.
There is a lot of social complexity in how gender, class, age, childhood trauma, and other things impact diagnosis, but that doesn't mean that ADHD is only a social component of ASD or vice versa. They are as distinct as ASD and intellectual disability are distinct, even if there is a high co-morbidity. Nobody is saying 'autism is actually a facet of intellectual disability, but it's how people are socialised that affects diagnosis'.
So validating! It’s been difficult to be around those who claim to be promoting autism awareness this month while ignoring those of us who are unseen because we don’t fit the of gender or cultural expectations.
This is incredibly validating. I love how many of the co-morbidities of autism are explained and interwoven with the experience of them. Excellent resource, thank you so much for making this free on youtube.
I am 52 and was diagnosed with bipolar in my mid-twenties. My daughter was diagnosed with ADHD and autism at 30, and the more I find out about autism, the more I’m starting to suspect that I was misdiagnosed
Mir wurde früher ebenfalls fälschlicherweise eine bipolare Störung zugeschrieben, mit der ich mich nie identifizieren konnte. Erst im Alter von 50 Jahren erhielt ich durch die Spezialambulanz die Diagnose einer Autismus-Spektrum-Störung. Seitdem hat sich mein Leben deutlich zum Besseren gewendet.
I'm the opposite. I was going through a severe depressive bipolar episode & was misdiagnosed with autism having sought the autism diagnosis out. I'm a mental health prof, I wish people didn't seek out the diagnosis in crisis as many of the depressive symptoms can mimic autism. I'm certainly not socially inept by any stretch of the imagination yet I do have ADHD.
Aren't we all autistic? In some way we are just in some degree is autistic
@@LimLim-yy8wb no, stop minimizing peoples struggles
Eating disorders association with autism in feminine people is very important because it significantly changes how to treat and successfully mitigate eating disorders. This is a great informational vided thanks. I hope you speak about monotropism.
Is there more information on this topic somewhere please?
Feminine people? You mean females?
@@emd9123ED or monotropism? Try Wikipedia, or just do a Google search.
@@emd9123There's some info about it in the book "Unmasking Autism" by Devon Price PhD. The author is autistic and fought ED for a long time.
Not just women...
Diagnosed at 37 with ADHD and autism. My childhood now makes sense and I can start to feel comfortable in my own skin
this was a jewel of a talk
I don’t think it’s hard for me to “put myself in someone’s shoes”, but I think understanding where we may be the same and different is challenging. Perhaps this is “the double empathy problem”, because I find that when non autistic people try to predict MY desires, especially within social interaction, they equally fail miserably.
I learned the majority of my social skills while studying Spanish. Most Spanish and Latin cultures have a tendency to be more socially motivated and I felt wonderfully guided through the pragmatics of daily interaction. I prefer to speak Spanish during everyday interactions and I have a deeper understanding of it.
I would LOVE to see research about this and seeing treatment involving pairing autistic language exchange partners, especially with immigrants. I LOVE speaking with immigrants because we can commiserate regarding the challenges of the culture we are living in and they can enjoy sharing their experiences with things they like and dislike about their own culture. This social interaction can be SO SO valuable to someone who is lonely and feels unappreciated.
I had a similar experience learning Japanese, where there was a lot of social interaction training that went with the language training.
The rigid and repetitive behavior is BECAUSE OF the sensory overload.
Source? That sounds scientifically dubious as repetitive and rigid behaviour continue even when sensory input is limited / reduced.
And rigid repetitive behaviour as an autistic trait has complex etiologies which cannot be limited to misophonia or sensory sensitivity.
On the other hand sensory overload i impacts emotions and cognitive processes, therefore anxiety can rise which can in turm trigger anxiety relieving behaviors such as rigid behaviours or needing rituals as a self-regulation self-soothing behavior.
No. Two different things. Something being in the wrong place or disordered increases agitation. It varies greatly, individual to individual, but it's cumulative I think. Order and organised patterns make me feel, if I am to give it a name, safer. Isn't this the case for everybody, to some extent, though? It takes some practice to develop the awareness of what happens in the body (as what happens in the body is the easiest way to know what's happening in the brain) to the point where we can actually feel the tiniest lifts we get from fixing or lining something up. Rigidity does minimise the chance of disarray, though. Maybe it's flawed to think of rigidity and repetition as the same thing. What you're talking about in 'repetitive behavior', I think, is the unconscious stimming which I believe might automatically increase with agitation and sensory over-stimulation doesn't necessarily mean agitation. Maybe, theres a fundamental distinction that needs drawing between single sense/single source over stimulation and the chaos of unmodulated multi sense/multi source over stimulation. Stimming, however, is difficult to factor with because the moment one becomes aware of it it tends to stop (unless it's of a certain variety *). And a lot of time the casual observer wont even notice the stimming because it has been driven incognito. For instance - I've got a pre-molar that feels loose, when I push my tongue against it, but isn't loose and only intense scrutiny would notice that I am * harrying it most of the time. Or somebody may be constantly wiggling their toes inside their shoes. It's only the more florid repetitive behaviors that draw attention.
I think it can exacerbate it yeah
The effect of sensory overload can last for days. Excitement can trigger repetitive behaviour too.
Yes, but not quite.
Rigid and repetitive behaviour, and all the various ways of stimming, are autistic ways of handling STRESS. Mutism is likely to be related to handling stress, too.
Sensory overload is ONE kind of STRESS. There are many other kinds of stress that affect autistic people, including executive dysfunction, social stressors, medical comorbidities, employment or housing problems, and much more.
This was amazing and so interesting ❤
I’m 40 and recently realized I’m autistic, thank you for this lecture ❤❤❤
Thank you for being firm in the FACT autism is how you ARE, not something to be cured.
I am on older autistic woman, diagnosed late . It was picked up through a professional as I was also talking of how I struggled with my son whom I was quite sure is Aspergers. Turned out I was correct about my son, no surprise there, but it was a relief to understand myself finally. I was hyperlexic as a small child and did incredibly well when I started school so no one thought I had any difficulty. I didn’t mix with other kids, and was often seen as being difficult because I only wanted to do my own thing, so I was a bad child. I had lots of eating problems and was also fiercely monotropic. Being monotropic got me into the most trouble as I was often not present thinking of the things that interested me. This is where I think it is important to be diagnosed as a child it will be helpful to develop into adulthood with less trauma.
Amen, I too, except it was my brother's grandchildren diagnosed first in our family.
oh geee ANOTHER one!!!!
women are taking over
I'm 53 and I will FINALLY have an assessment later this year.
My health and fitness is incredibly poor, as is my mental heath.
I can only say that for me, it's down to poor choices in life that lead me to being so unhealthy. Poor choices down to poor mental health.
Rice and beans. Drink water. Potato3s eggs. Fruits. Naturell youghurt. Fish like salmon. Chicken. Take walks
Can I ask how much you'll be paying and what country you're in? Here in the US I've been quoted $2k
@@purplecarrotstirfry It's roughly the same price here in the UK. £2,000 for a private assessment.
@@DJ-Daz Got it. Thanks for your reply!
I was lost but now I'm found. I love you. I really do
One of the best lectures on autism I've ever seen. Thank you so much.
A comment for the algorythmn from an interested autistic person. 19:00 I’m grateful for information on the profoundly important study confirming that masking and camouflaging has been scientically proven to have a detrimental effect on our mental health as autistic people.
Thank you so much!
I would love to see more cross-cultural studies on autism. Some examples:
- How culture affects recognising and living with autism, and especially among immigrant populations in countries with high autism awareness. In some cultures, eye-contact is not respectful, or being precisely on time matters, or food is approached differently. Does high social conformity make it easier (the rules can be stated) or harder (less flexibility)?
- How might autism affect experiences of culture shock and cross-cultural adjustment? An autistic person has a life-time experience of not quite fitting in and of learning non-intuitive culturally appropriate behaviour by observation. How does this affect support for autistic and non-autistic people in cross-cultural situations.
Yes, and cultural issues skew research methods and processing results. But we can do research with WEIRD expats, and within the immigrant communities in WEIRD nations (very relevant to educational and medical applications of Autism research), or among international students in universities (who are at least E and R, and have a basic understanding of research processes comparable to the usual subjects, which cuts the number of variables to deal with).
Culture shock has been pretty rough for me! 🤣 I would also love to see these studies!
Fascinating questions!
Are there any available reports on such studies?
I do think culture will affect the result .In some cultures ,parents ,they do not want to know they have a child with some level of disability ,it is a big stigma .that does not help .my son was diagnosed with autism when he was 2 years old .his father denied it and did not let the child receive the support that he needed .Eventually, we divorced, and I was able to get some therapy to help him .my son now is 20 years old . He is doing better, but still, he has his own challenges .
I so appreciate the term “pure autism”. Maybe it isn’t a term that will take off, but it really really is needed. This is the best talk on autism by a non-autistic person I’ve seen.
approved by an autistic person after a lot of research (still ongoing). I'll share this vid with family and friends for their education.
What a wonderful, clever and autism respectful presentation! Such a lot of important points explained in a short summary on where we are on understanding autism right now. (Diagnosed at 54 in 2019)
Like many others here, I'm in my 50's and awaiting a first diagnosis. It seems so obvious now that I have the facts and after i have doubted myself for most of my lifetime and been made to feel like a failure by society simply because I was never able to fit in. A diagnosis would be such a relief and allow me to accept my differences and make something of my life before its too late. I'm on a 45 month waiting list now, which is awful, but still a light at the end of the tunnel.
So why do you need a diagnosis? How would it help?
@@MishaSkripach read it she said why. Because it will show to herself that shes not just whatever names people called her, but that she has a condition that means that her behaviour is understandable.
I was actually misdiagnosed with autism having undergone a severe depressive episode at the time I was assessed. Now I need to go through the process of being undiagnosed 😢
@@stampandscrap7494 This is circular logic. Autism label does not make anything understandable, it is simply a term for a collection of behaviours and so cannot explain anything. Her condition is still not understood (maybe it is trauma, Thyroid? lack of vitamins? cowardice? Parenting went srong? Brokenheart?), it is simply goven a lavel to subject her to Mental Health Act for llife. Now, if she misbehaves in any way, clinicians such as social worders, underpais and working class, can deny her freedon for an indefinite period, without a court order.
I wish my employer, family, coworkers, job helpers, and my one friend would listen to this entire podcast. Brilliant. ☮️💟
Thank you very much for a hard work in a autism spectrum research, study and acknowledgement. I believe in a great future without bullying people on a spectrum and with a deep understanding of ASD population 💜
Yes🎉😮
I love that she is talking about her special interest!!! That’s the dream wow!!!!
Improving the lives of autistic people? Hmm, maybe their lives are improved by not forcing the Neurotypicality on them. Thank you!
This is overly simplistic and quaint
As intended :)
Yes exactly 💯
@@Vgallo yes, it's literally that simple.
Yes but it isn t the random NT who takes the big decisions. He votes but it s an illusion since ppl who rule are disordered ppl who need control. So the NT if unaware (most) he lives superficial, even if he has a sense of self/core identity & capacity of introspection he just exists adopting family s/society s ideas. That s why they deal w depression etc. They can t use the emotional identity-empathy/conscience or else they d care about wars, group of ppl & would find humanistic solutions in 2024.
Erratum: Asperger's syndrome was not introduced in the mid nineties. It was introduced in the late eighties. It's true that it wasn't introduced to the major diagnostic manuals until later, but people sometimes forget that it wasn't until the mid nineties that those manuals acquired their modern dominance. I should know, I was diagnosed with aspergers in Australia in 1989. (And yeah, I could share some stories about the shortcomings of the diagnostic process and of clinical understanding at the time.)
I started hearing the term Asperger's used to describe the type of autistic brain wiring I have, back in around 1982 when I was in middle school.
I am still told my 1958 autism diagnosis is impossible because there were no autistics in existence before the 1980s. The point is that nothing ever existed before a bunch of ancient males spoke it into ink.
The reason to do things on my own rather than together with others is NOT anything socially, it is just that it is damn hard to concentrate on doing anything physically while having a conversation at the same time.
amazing talk, thanks
Healing balm for my autistic soul. Thankyou.
Awesome. Hard to watch. First time through i missed the hardest parts, tuned out. Thought I'd heard it but really I hadnt. My mind filtered it, only allowing a bland vanilla version. Reading some comments showed me id missed some vital bits, thankyou commenters. Second time watching a bit until it whacks me. Stop the video, take notes, and maybe go on. It really is awful to hear. Thankyou Francesca, we need to hear this straight talking truth, and the stats are formidable. Just brilliant.
It absolutely IS the periphery stuff that's most damaging. Spot on. I'll keep trying to watch. Many thanks.
As someone who has discovered over the past decade (I'm 35) that I'm autistic, adhd inattentive type, cptsd, bpd, osdd, ocd & also have ME & aps....this explains so soooooo much
Ooof that's an unfortunate set of comorbidities
@Albinojackrussel it is isn't it 😩 thank you for understanding. It doesn't feel like a single person does sometimes even tho I have a therapist and a long term partner who I have 2 children with
That honestly seems like a bewildering list to me. Do you feel like you're capable of understanding yourself?
@captainzork6109 I suppose it is? I'm not sure what you mean though about me understanding myself. I'd guess probably not 😅
@@allie54774 O, maybe I asked a weird question. I'm just wondering how it must be, because I already have trouble figuring out how things work for me with just inattentive ADHD and autism
Halfway through and one of the most informative and concise videos I have come a cross and I could have used it much earlier.
I was not only picked on by my classroom peers, but even several teachers had a go at me and one deliberately forced me into a situation which I simply couldn't cope with. I just wanted to evaporate to escape from that one. I was forced to participate as an "actor" in a play put on in front of the entire school by a travelling troupe. I deliberately avoided going up and was then called out from the audience to "play my part" and after suffering the indignity of being on display going up to the stage, was later rubbished for my "performance". I absolutely hated those people for what they did. I was beginning to learn that being on my own to enjoy my passions alone was the only way I could exist with any degree of security in an alien world. And that was just one of a number of indignities I suffered along the way. To this day I have never attended a reunion of any sort. Running away and staying away was my only defence. I never wanted or want to see those people again.
Nothing justifies cruelty!
I feel sorry for what you had to go through. It reminds me of something I saw a year ago when attending a gymnastics show of my daughter's friend. There was a young boy who absolutely felt uncomfortable going on stage. He most likely was on the spectrum. They nudged him to perform his gymnastics routine. You could tell he didn't want to be out there. And then when he was done, everyone cheered. Most people in the audience ignored his discomfort and applauded him for his "courage", they mistook his overwhelm with overcoming anxiety I guess. It's sad to see how people push others to do things they normally would avoid if they had a choice. TMI am AuDHD myself. And I did perform in front of people earlier in life as an adult, but only because it was a special interest of mine to "act". Not because I was pushed on stage as a kid by adults around me.
THANK YOU! 💛I wished for so long there was a lecture I could share with family and friends highlighting the perspective shifts and recent research revealing misconceptions and incomplete data around autism.
I hope this lecture will be shared widely and appreciated.
Stay curious
my 56 year old partner has aspergers, he has never been formally diagnosed,, but he 100% is.
Things don't work this way:
1. "Asperger" is no longer valid (since 2013, it is now just called Autism grade 1 (there are 3 grades depending on the amount of support the person needs)
2. Someone doesn't "have" autism, they ARE autistic!
3. The "Self-Diagnose" is not valid at all, if you might think your partner is autistic, go get some visits and a proper diagnose!
@@nxthinelseWhile you are technically correct on the first two points, don't need to be self-righteous about people being on a path to more knowledge and understanding.
On the third point, autism self-diagnosis is actually very much valid, for many reasons including the fact that autistic self-diagnosis is actually highly accurate.
The issue here is diagnosing another person, which is more problematic. However, in some people it's so abundantly clear, the advantages of being aware of an undiagnosed person's probable autism greatly outweigh the ignorance of it.
Sorry but I think it would be best to get a real diagnosis, a self diagnosis of any kind would never be valid for me, because you never know for real.
@@birgittnlilli9726 I needed a professional diagnosis myself because I would doubt myself but I think that self diagnosis is valid if someone does a lot of research. Not everyone has the money to get an assessment. If I didn't get stimulus checks during Covid I might not be diagnosed. I am lucky that I was able to afford the assessment.
True, if you have an extra $3,000 laying around! Otherwise, free online tests used to be available. The test I took had 35 questions. A score of 6 might be questionable, but not a score of 22. Moreover, my father rarely spoke and did nothing except golf or play chess with male friends. I think these issues resulted in my estranged brother, too.@@birgittnlilli9726
Wonderful lecture, so respectful and evidence based. Thank you!
Thank you so much for all the research we so desperately need to feel more seen and understood. 🙏
This should be seen by a lot more people. I’ve had a lot of incidents where I tell a “friend” of my traumatic experiences (recent or not) and them just responding with “oh I thought something bad happened to you” or laughing at me crying and invalidating my feelings or telling me I’m too sensitive. Of course that’s gonna teach you not to trust friends anymore over time
I do wonder what's the validity of creating distinct diagnostic labels to distinguish cases of Autism based on the presence or absence of language impairments and intellectual disability. This seems to be really big point of contention between parents of high support needs children versus the autism advocacy movement (and even within the movement, depending on where in the support needs variability the specific people have). I really like the clarification that autistic individuals can and do shift in their presentation and support needs throughout their lives, based on a multitude of factors, and how people who have the high support needs presentations can grow up to adolescents and adults who would clearly fit the profile of what used to be called Asperger's.
In my own reading by comparing the DSM-IV TR with the DSM-5's respective sections on Pervasive Developmental Disorders versus Autism Spectrum Disorder, there's some stuff that becomes clear to me:
- While Asperger's was correctly described as a presentation of autism in which language impairment and intellectual disability doesn't occur, the diagnostic criteria for the classical presentation of autism did not specify a requirement for the language and/or intellectual disability elements. This means the Asperger's diagnosis was inconsistently applied, because many cases in which the language impairment and intellectual disability occurred were being diagnosed as Autism rather than Asperger's.
- Asperger's definition of the language development milestones was really strict, meaning that cases in which slight delays in language (ex. starting to speak in ages 3-5, as opposed to speaking in ages 1-3 as in typical development) ended up as Autism rather than Asperger's, even though the cases looked indistinguishable from Asperger's once reaching the school age.
- The DSM-IV and its predecessors erroneously specified that, while symptoms of inattention and hyperactivity were often present in Autism, and especially Asperger's, the clinician should not diagnose ADHD if signs of any pervasive developmental disorder were present, and vice-versa. Today we know this is a really blatant error in characterizing both ADHD and Autism. The DSM-IV also mentioned how it was also known that cases of Asperger's were very often 'misdiagnosed' as ADHD at first--the ADHD-ASD co-morbidity was in plain sight all this time!
- Given that many, but not all, of the support needs of autism are related to the language and intellectual disability impairments, I think a more accurate characterization of what used to be called Asperger's syndrome would be Level 1-2 support needs Autism with no language nor intellectual impairments, more interest in social interactions (despite the social communication difficulties) and co-morbid with ADHD. This is a very close match to what the neurodiversity advocacy movement nowadays terms the AuDHD presentation.
- The other really problematic diagnosis is what's called the Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). This was a dumpster for the cases in which the other PDD diagnoses couldn't be fully justified, often due to an apparent shift from the early signs of Autism into a seemingly normal development. The real tragedy is this diagnosis often lacked proper support options.
- Meanwhile, while the DSM-5 did correct these issues with the mess of Pervasive Developmental Disorder diagnoses, it still has some glaring problems. The lack of of emotional dysregulation symptoms and extreme reactions at certain types of distress (ex. meltdowns, shutdowns, emotional lability, low frustration tolerance) as diagnostic criteria to check for, means that Autism continues being misdiagnosed as other disorders characterized by the emotional dysregulation and mood extremes. Stuff like Borderline Personality Disorder and, strangely enough, Bipolar Disorder, end up being erroneous diagnoses that end up interfering with actually acknowledging and addressing these presentations of Autism. This aspect is especially problematic for female presentations of Autism, as the emotional problems and social camouflaging / masking behaviors are far more significant.
- An emerging area of interest is how Complex Post-Traumatic Stress Disorder (C-PTSD) can cause neurological dysregulation. The sum of repeated exposure to adverse life experiences and stressors can cause and exacerbate various symptoms that are characteristic of both ASD and ADHD: sensory problems, attention, focus, task motivation / initiation / sustained effort, emotional dysregulation, social communication, difficulty with transitions and unexpected changes, situational (or even general) anxiety, impaired interoception, alexithymia, and so on. This causes difficulties for differential diagnosis, with the added complication of C-PTSD often showing up along with neurodevelopmental disorders.
- While I know there's people who mention that autism diagnosis are of little value once out of formal education, it's also true that ASD also comes with a multitude of atypical physiological reactions, to stuff like food, temperature and medications. Just knowing the presence of ASD in the person should be helpful in both finding ways to mitigate environmental stressors and prepare clinicians to properly approach pharmacological and dietary treatments with the awareness to prepare for negative responses and nonresponsiveness to the medications. The other area of interest is the use of more experimental drugs to treat issues characteristic of autism, with promise shown by ketamine, psychedelic compounds, and medical cannabis.
Have you content, such as a video or blog, where you share your clearly expressed reasoning?
@eScential On mental health sublects like this? Not really. I am, however, am avid reader and researcher on the sibject for personal reasons. I suspect both ADHD and autism in myself, between personal difficulties over the years, reaching a critical point of distress. I'm currently awaiting formal evaluations for both of those conditions.
My partner comes from a family with a history of autism but is not herself autistic. She does however have C-PTSD and that means we share some behaviours. It may also be the case according to this video that she only has a limited sub set of autistic traits inherited and then C-PTSD on top of that.
@@wiegraf9009yes I think I have some autistic features albeit I'm not socially inept which would be the DSM Vs defining criteria (as much as a disagree with the biomedical model of autism). I think we'll eventually see a more inclusive criteria as more models are incorporated & we move away from the biomedical model.
The beginnings of feeling VALUABLE and VALID now, with emdr therapy, after 66 years on Earth, is so awesome, but more than slightly overwhelming (with joy) at times :) Thank you and colleagues for your terrific work in this area.
It is amazing to hear this overview from Francesca Happé herself. Thank you so much!
I've noticed that Autistic people seem not to be able to visualise themselves into future situations. Into an occupation, new job, new task etc..
This may contribute to anxiety. Shadowing people, practice runs, a buddy system, role playing, etc. could help with this.
Empathy, loyalty, truth certainly seem to be traits. Breeches of these certainly throws Autistic people into circular thoughts, trying to resolve the whys..
Finally, processing speed may be very much slower. This can certainly be accommodated for by writing instructions, slowing down instruction giving, ensurung breaks are worked into work, etc. / given time to settle down before starting work, school, etc.. a nice cup of tea etc.. Autistic people seem to see things in steps. They must go through each step. They can't easily see through to the end / big picture..
Anticipating issues / scenarios with them can help to reduce trauma.
Also, educating the public, schools, students, colleagues, employers.
Have you a clear understanding of aphantasia?
Yes, but not that. Often great memory etc..
This is known in psychology as Episodic Future Thinking (EFT) and there are studies that show that autistic people tend to find EFT more challenging.
Yes, yes, yes!
A beautiful mind indeed ❤ Now to share this with the mental health professionals in the States who seem to still be WAY behind on info and dismantling biases.....
Thank you. As a mother of an autistic man who just turned 34, it has been a challenging journey.
well said.. thank you! i wish i would have had you around while growing up. im 65 now. life had been confusing. school was hard, yet i love to learn!! i still deal with "life" through different eyes.. several abuses. strange how it all started within the home your raised. You have great understanding of how this world seems. Thank you!!! hugs
As an autistic person, this was a fantastic watch! Extremely insightful and I felt the truth and wisdom in it.
Edit: I think something that should be the most emphasised in education about autism is about autonomy and against infantilisation of autistic people. In my opinion, everyone has a reason for doing something. An autistic person that is damaging property may be doing it to seek catharsis in violence, not because they don't know what they're doing or that they are just causing destruction for the sake of it.
Thank you for such a thoughtful, respectful and considerate explanation of autism as it is currently being understood. Definitely one of the most encompassing, well-rounded descriptions of autistic lived-experiences. 🙏🏻
This new definition is so broad that it now includes most of the people I know. It is about time researchers started trying to work out which pathogens are responsible for diseases that affect the brain. The first step in the right direction would be to narrow the definition of disorders with unknown causes.
Thank you for sharing this lecture.
Thank you, Professor Happe! Your work is so important, and your personal warmth has given you a special gift of making it accessible to a wide audience. You are a powerful advocate for people with autism.
In 1970 I read "Dibs In Search Of Self" about a neurodivergent child and his family. Maxine Axline. Well worth looking back on this work!
The fact that many cultures still have a bias towards males for allocation of resources in healthcare could be a contributing factor.
Yes and also that many women self-select out of the medical system because of past trauma they experienced in it. I've seen it happen so many times. This would be expected among female autistics given the high incidence of PTSD shown in the video (women receive neglectful or directly abusive treatment, autistic women would be more likely to experience and sustain PTSD from this kind of experience, therefore autistic women would be more avoidant of the medical system).
Then the feminists march in and take over everything. make it all about them.
stop making
it all about
the wom
The Judge Rotenberg Center (JRC) is an institution in Massachusetts. People with intellectual and developmental disabilities (I/DD), mental health disabilities, and learning disabilities live there. Both kids and adults live at the JRC. Many autistic people live there.
Some people at the JRC are forced to wear an electric shock device. This device is used to punish the person wearing it. The device punishes people by giving them electric shocks. These electric shocks are very painful. The JRC shocks people for small things like refusing to take off their jackets or stimming.
from ASAN - Autistic Self Advocacy Network 3-26-24
Yes, I read a book by someone who was kept there for years. It is a horrible place.
If this is true, then keep talking about it. I have not heard of this facility, but I will do some research about it. Thanks for posting your comment.
@@turquoisemama33 you are welcome. The ASAN website and RUclips channel has info on how to protest. there is a letter that we can send electronically by may 28th, 2024 which may help ban use of electric shock.
@@tracirexglad I found this today. This is flipping dusgusting
The internet is accessibility for me
I can't believe this lecture happened just a couple of miles from where I live and I missed it!!!
Brilliant gently follows my strange life story. Thanks.
Phenomenal lecture. Many thanks.
thank you for putting this all together!
Great over all view / comprehensive update- I will consult my siblings on these new findings( maybe save lives & happiness)‼️‼️THANKS⚕️
As someone who has been diagnosed with Asperger's on his 58th,this is interesting. Born in 1958 this declares (in part anyway) why my Asperger's stayed under the radar for so long. Too bad that populair conceptions of autism stay behind. Although there is a trend to more accurately depicting autism, but in my view this trend is still to un-influential.
Same here. I was diagnosed with Asperger's a few years ago (in my early 50's) a few years after my son was diagnosed with autism, anxiety and rigidity. It did not really come as a surprise as I could see some of the things in my son but it was almost a relief.
I was diagnosed ASD/ADHD at 59.
This was a wonderful talk. Thank you for sharing your knowledge, and for having such great respect and sensitivity. 🤓💕
Such an excellent lecture! Thank you!
I am autistic, and I am very clumsy, and I can see 4 dimensions and imagine amazing 3d worlds. If you are autistic, consider checking out the metaverse. Things are about to get much better for us.
Can you give an example of how you see 4 dimensions?
Thank you professor Happé for providing this update about Autism Spectrum. We are no longer saying Disorder. Thank you for mentioning that we grow into autistic adults. We ask that everyone please don't only mention children when discussing autism.
Oh I’m absolutely over the moon with this woman’s lecture!! Well done!
Phenomenal lecture. I had to check the list of available lectures and it impressed me enough to subscribe. Kudos.
Dr Happé here has elucidated so clearly so many aspects of autism that have previously been muddled or misunderstood. This was such a wonderfully clear presentation.
I particularly found value in the idea that the three components - social, communication, restrictive repetitive behaviors - are separate genetically. That when they all three come together they constitute autism, but may have been inherited from separate non-autistic individuals who had challenges in only one or two of these areas. This makes so much sense and seems very consistent with life experience.
I also appreciated her careful response to the nuances of ABA therapy, among other things.
As the mother of an autistic child with intellectual disability and severe challenges, and also suspecting I may be level one autistic myself, I appreciate Dr Happé's addressing both of these perspectives, and that parents of severely autistic children need different resources and representation than so-called high functioning autistic individuals. I found great value in the separation of the autism from the adverse symptoms and experiences that may benefit from a "cure". I don't want myself or my son to be cured of autism, but do want and need support for difficult things such as anxiety that accompany the autism.
Very enlightening! Thank you!
What a wonderful, comprehensive and respectful lecture. Thank you!
Rising above the label of autism is also important. We are unique and different from others even within the autistic spectrum, something we are still learning every day not to be the same as others - we are not all the same, Published Writer I wrote a book during the pandemic - so chuffed with my achomolisments
Thank you!
A very interesting and beautifully delivered talk ,thank you Francesca .
A fascinating lecture. Explains why I was just that “weird girl” and not autistic, because I would not have fit the diagnostics until I was near retirement. 😂 Ah, well. Now I can organize my life to deal with recognizable issues without having to explain it to others (awkward!)
This is fantastic! Thankyou for sharing the lecture:) i found the Information on the dimensional approach to autism as well as on the many „autisms“ really interesting. I am a 25 year old female and I am in the process of getting an adhd diagnosis (the diagnosis is basically confirmed) and i have also been struggeling with different types of ocd from a young age. The last years i’ve been researching autism and many traits / experiences relating to autism click but I am pretty certain that i don‘t fit the diagnosis fully/ categorically (on tests i always score just about on the cut-off) So i often find myself in this uncomfortable gray area of having elevated Autistic traits and relating to autistic people (often more so than to neurotypical ways of thinking and processing) but also not fitting the full diagnostic picture, it makes it more difficult for me to understand my identity and validate my struggles. I really struggle to accept this gray area for myself but your lecture helped me feel more valid! Great and up-to-date Information! Haven‘t found many Talks Like this before:) i just wish that half the medical professionals would have this knowledge!
I have ADHD and am also autistic, and my mom is autistic but doesn't have ADHD (I inherited the ADHD from my father). There are so many struggles I have with ADHD she absolutely cannot comprehend and it has always made our relationship difficult. I feel your pain.
Thank you so much for your reply and please accept a big internet hug🫶🏼 also little update: i am finally medicated for my adhd and interestingly ever since taking the medication i can see autistic traits shine through more strongly. The adhd and autism combo (in my case: the potential, self-suspected combo) is a funny one. There should be so much more research on AuDHD
Thank you for this lecture. I am currently waiting to see if i have a chromosome syndrome to explain my autism. I am glad to hear you refer to autisms plural. My particular type of autism seems to bare little resemblance to others these days and i feel isolated by that.
I am so glad you would likr to investigate autism and Motor development problems. Indeed for myself its a very physical issue.
All the best to you.
I am a woman who asked my doctor for an assessment When going through the test I told the practitioner that I also have an eating disorder and there's a strong correlation between ASD and ED in women. She said but we cannot look at it that way and dismissed me and told me you do not look autistic but after the assessment I got diagnosed
Regarding the part of the lecture that is about trauma and PTSD, it's unfortunately quite common to confuse trauma and so-called traumatic events. Trauma means "wound", "damage" and similar kinds of consequences of an event or repeated events that build on such damage. An event is traumatic if it causes damage, causes trauma, an event is not in itself a trauma. Best is to not call an event "traumatic" because it's not an inherent property of an event, it's a possible effect of one. If we understand this, then we can also understand that the listed examples of events in the PTSD diagnosis criterias are just that, examples. If we understand that people are individuals, some more so than others (for example those that might receieve an autistic diagnosis), then we'll also easier understand that any event or sets of events can cause PTSD. The PTSD assessment instruments need to be updated to reflect this reality. Personally I question the purpose of psychiatric diagnoses outside of research. I'd prefer a focus on help needs of the individual rather than labelling and categorizing people. I certainly question labelling people as disordered, when so often it's more a matter of a fish trying to survive on land, a fish out of water, rather than a disordered fish.
Beautiful work, thank you!
Excellent lecture! Thank you!