Autism Research & Neurodiversity: The Changing Culture with Sir Simon Baron-Cohen 

All we, autistic people, need is to be accepted and having our strengths exposed by daily activities, not our weaknesses.

I used to “organize” my dolls rather than “play” with them. Girls don’t get diagnosed. First time the diagnosis was suggested I was in my 30’s.

It's hard living on the bleeding edge of evolution - it's not a learning disability but a teaching disability. Hopefully the education systems of the world and society will soon be cured.

I love simons reaserch and how he fights for autism as a gift 🎁

Two "reasonable accomodations" for the classroom: Cover walls with sound-absorbant material to minimize the echo that neurotypicals might never hear but ASDs feel. And, when using headphones to block sound, consider trying them where they apply colateral pressure to the skull without blocking the ears. These headphones limit vibration of the skull bones, which in turn vibrate the brain (directly or through waves of CSF), and that vibration of the skull, which has pain receptors on its surface, and the brain, which can cause such subtle bruising that current studies don't pick it up, are, in and of themselves, a very real problem separate from auditory stimulus. One could consider it bone transmission of sound, as opposed to air transmission, but don't stop there. It's not just sound in the common sense but more in the sense of physics and sound waves vibrating the molecules they pass through.

It is more crucial than ever, with the genetic research, that autistic people make their voices heard and be recognised. We are not disabled by our autism, we are disabled by society that excludes us and doesn't understand us. We need to start changing the view of autism as a disease before we start being eradicated before birth

Thank you for an excellent presentation. Ruffin's mother (Ruffin was diagnosed at 3 years, 3 months, and defended his STEM thesis in robotics at UCSD in June of 2021, now Dr. Ruffin White, at age 30, and the CTO of a robotics security company in the EU).

their strengths are the window to enter their world .. question is are we able to break the norms of expectations and meet them at their level... and enter their world and bring the best out of them

The best lecture of autism so far, among all brain and cognitive sciences researches from the top university and research institutes. Thank you UCTV!

35 male here. a few months ago, very randomly, I decided to take an online test. I was so surprised just reading the question, as if the questions were designed for me specifically. Result was shocking, so I took another test (different number of questions). Both results were 84 and 86% likely autistic. Then I learned about the characteristics. Suddenly my whole life made sense. Yes, far more than I like to admit I thought of ending it all, but for once, I was relieved. I will persue a proper diagnosis, but personally, I have zero doubt left in me that I am autistic. I just wished that getting an appointment wouldn't have taken over a year..

SBC has already become one of my favorite scientists

The first (musical) hole in the hollow bone was probably a nutrient foramen, i.e., the natural hole through which artery and vein carry blood in and out of the interior of the bone. The initial airflow was probably sucking, not blowing, to remove nutritious marrow. And the act probably included accidental, intermittant coverage of the nutrient foramen with a fingertip. An autistic brain would pay more attention to the whistle and its change in tone, would create a hypothesis, and would test that hypothesis first by blowing into, rather than sucking out of the bone, and then by adding another hole, and then by checking the sound with and without covering that one, and trialing both holes at the same time. It's a logical, systematic, stepwise progression, suitable for a mind which looks for patterns and focuses on variations within patterns.

Thanks for your empathy & professional ism. The updates to studies and how this will be recieved is very relevant to my family.♒️

Fabulous video...thanks!

24:00 It might not be Depression. It might be an extremely painful life due to ... well, like with me, my life, from age 2 or 3 until yesterday, has been a life that has included emotional abandonment and medical malpractice, which in my case was misdiagnosis and mind altering garbage meds that lead to "iatrogenic" illnesses, including kidney failure from Lithium and Ruined (By Doctors) Life Syndrome.) Suicidality in me exists at times due to the moment to moment suffering with an internal constant judgement of myself leaving me almost always so guilty feeling for imperfections that I know everyone would be better off without me. I am not Depressed. I am myself: honest, strong, clear-headed despite garbage meds, good, cheery, and generous 🕊️🦉🧡💐🌍🌎🌏💐🧡🦉🕊️

Very good talk, thanks! The disability vs “neurodivergence makes you special” is also a thing in ADHD. Like I know a lot of people who are hyperactive but are productive and don’t have the same impairment that I do. And going on about your individual strengths blah blah sort of trivializes the very real impairment that affects so many facets of my life but gets written off to bad character and as something I must just pull my socks up about. Or people expect me to just “be better” because look how well someone without my talents (or executive function impairments) can do. But yeah I also want to believe that we can flourish under the correct circumstances

Thank you for this , I feel more seen every day

I have to respectfully disagree with the first contributor, Becca, on not being curious about the cause of autism. I don't believe she intended to generalize all autistics when she said "we don't care why it exists" because she did preceed it by saying "SOME of us could put the causes of autism in a box, put it in a closet and never look at it again"... BUT... to speak for myself I DO care about the genetics of it. I was diagnosed after my son was diagnosed and I found out it was hereditary. Then I began realizing why my dad was so socially awkward, couldn't make eye contact, got irritated by certain sounds, had very little friends, hid away at family functions, etc... That genetic link is fascinating to me. In some regard, being able to possibly identify a specific genetic link would even further solidify my diagnosis. That may be a selfish reason, but I'm just being honest. To be clear, I don't suffer with imposter syndrome because I have felt soooo different my whole life and autism perfectly explains it. But it would add external validation for people like certain relatives or friends who don't believe in the diagnosis. The people who say "We're all a little bit autistic" or that think autism is incorrectly being over diagnosed. I'm not implying I need external validation to believe my own diagnosis, but having something a bit more concrete to be believed by others would be nice. People believe labs because they're often not subjective... but mental health diagnosis can be so subjective so I understand the skepticism of outside observers. I realize there are thousands of possible genes and no particular gene has been identified, but I do understand there have been a few that have been identified as having an increased risk. That's not all encompassing. I'm familiar with genetics as I worked with geneticists in my previous line of work (infertility). I understand that even if you identify one genetic mutation or link there could be thousands more variations or mutations out there not identified (cystic fibrosis is a great example of this). But even identifying a few is fascinating to me. For some reason I've just always been SUPER curious about genetics, heritage, and genealogy. I got my 23andMe DNA test done way before my autism diagnosis and I was on pins and needles until I got it back. Did the results change who I was? No. But it brought a lot of joy and understanding to my life. I understand the ethical concerns of genetic studies as mentioned in this video... But these are just my thoughts. The thoughts of one autistic. They call it a spectrum for a reason because we all feel and think very differently.

I wrote to Edinburgh University yesterday as the have masters degree called Education Futures which focuses on policy in education. Great idea, right? Nope, this course is £18k compated to the masters that my son is doing at one of the best universities in the UK. It is well known that ND people and disabled people are far more likely to be unemployed or underemployed and will be unable to fund such an expensive course. I find it incredibly ironic that a course that is supposed to be about improving education policies is excluding the very people who desperately need change to happen in the field of education.

Yay Becca advocating for us!! 🤟🏼😜

Speaking from both a well-educated and experienced position on this topic personally, the scientific and research communities need to start looking into the combination of excessive environmental stressors on a woman's body prior to and during pregnancy and then on the infant after birth. I believe repeated trauma has a huge role to play that's getting overlooked. When we look at the statistics on this explosion of autism in our children, we see that the higher the level national productivity, the higher the level of autism grows. There is strong physical evidence to indicate these kids are systemically inflammatory to the level of immune attack on their brains and other vital organs. We know that young children have delicate blood brain barriers. We know that excessive crying and stress at that age can damage this delicate BBB. It also dramatically increases the amount of immune activity in the body. Did you have a boy? Was he whisked away from you, slapped on a cold steel table only to have his foreskin shaved off without any anesthetic? He was TRAUMATIZED AT BIRTH by this. Excessive stress and crying in infants weakens their blood brain barrier. Another chronic environmental stress these kids develop are hypersensitivities to stimuli when everyday sounds, smells and textures can be excruciatingly painful. Add in a heaping dose of repeated societal abuse and trauma (caregivers who let them 'cry it out' or batter them for it), and you have the perfect recipe for brain damaging an entire generation of children. This is the result of unregulated capitalism and conservative child-rearing practices that seek to punish rather than instruct. When you shove women into three or four low-paying jobs to make ends meet and allow their abusive partners to run roughshod over their lives without treating the abuser appropriately, you open the door to epidemics like this. Look into that. Look into systemic inflammation and how that generates brain autoimmunity in combination with chronic environmental stress, and you'll have your answers. The chronic societal traumas heaped on these people simply make them sicker and more likely to need even more help. Just stop and act like frigging human beings that know how to live in a community together. There's room for us all.

Respectfully I think the issue with autism and genetic studies is one-day prenatal whole genome sequencing will become common. At that point if GWAS studies of autism are developed enough and in the public domain they can be used to make predictive algorithms for whole genome prenatal screening that can say 'there is an x% chance your child will be autistic.' If that number is high parents will be tempted to abort. Its very difficult to police the use of an algorithm. Its very difficult to police termination choices parents might make based on an algorithm. The only real point of control is to legislate to prevent parents getting prenatal whole genome data or prevent the data for the construction of such an algorithm ever entering the public domain. That's why the 10k study maters. Because until legislators commit to limiting the data health care providers can provide parents about their unborn children the only way to stop this sort of thing is prevent the algorithm being created. That's not to say that Baron-Cohen would ever make such an algorithm but unless he chooses not to publish the full data of his study some one else potentially could use it to make such an algorithm.

Wonderful discussion. Further discussion is urgently needed in the area of suicidality and autism.

The point that the child who was abused was somewhat protected by not needing as much social attention is meaningful to me.

I'm not in a position to comment. I'm just observing and learning more about Autism. Forgive me for this comment, but I have the same rip in my wall. It was done by my parrot!

Alguém poderia colocar a tradução em português por favor

Of course we want to know where it came from? She speaks for herself...thats it. I care about what science says about autism...and how it affects me.

It's not just that barriers exist to getting a job, it's inability to break into social groups even if you do get a job. It's the inability long term, to maintain a job that doesn't make accommodations for the autistic person's way of being. Emoloyers and staff need to understand that a shorter working week may be needed or occasional additional breaks and time out, or off work. The need for these are looked on as a weakness or laziness on the part of autistic people. Exclusion from work banter and the lack of understanding towards the autistic person when they get the banter wrong is also a problem. Not listening to or occasionally engaging in what the autistic person has to say is a further compounding problem in making life bearable for the autistic person at work. Constant negative feedback in the work place combined with non inclusion in the banter and fun and hypersensitivity to noise etc..further compounds the problem. The autistic person will be mentally exhausted after work. More so than others. This has to be understood. Not being considered as even material, for being a close or potential close friends is so soul destroying too. Friends are sooo important for doing things with, for gaining trust and confidence, for discussing things with and for understanding life and its ways. It is also difficult for autistic people to fathom what skills are needed to meet a life partner, particularly if they have been excluded all their lives from the chat about this etc.. Neuro typical people may never have really got to know the real autistic person despite working or being in school with them for years. The honesty and decency in that person may never have been experienced outside family. Exclusion impacts the autistic person's ability to understanding sex and sexual behaviour and how to attract a partner too. This is on top of the autistic person's normal social awkwardness. Life can be very lonely due to exclusion. If you are not included, it's difficult to ever meet someone or learn what is or is not appropriate to say or do. It is my experience that autistic people are very sensitive and empathic for the most part. They are very social in their own way. At least they start out this way but life serves them many hard knocks. Constant exclusion and bullying can changes people, make them scared. It can perhaps even harden people or make them paranoid. This type of treatment would harden anyone. Perhaps neuro-typical people need to learn to be more empathic and inclusive. Autistic people try to develop social skill to survive in a Neuro typical world. They would also wish that neuro typical people would also try to develop skills to understand the autistic world. Autistic people want to have relationships with Neuro typical people not just with other autistic people. They don't want to be ghettoised.

If those genes were found to be there pre-natally and fetal androgen levels were found to be high. A diagnosis of autism cannot be made biologically only behavirouuly but if the Mother wants to know if the risk factors for Autism are there and the possibility her child may have autism is high, doesn't she have that right to be informed on this? I think this is a important discussion that is to be had.

Great video :) ... :):):)

“Not about me without me” has long be a tenant of the disabled community

It goes like: "I have a secret self ... and I've been so hurt, that I won't show it to you, unless I'm physically unable to maintain a cover ...

An Autistic brain is a normal brain for us. We like it. At least I do and would never want that changed,. I am self aware, self actualized, sentient, more aware of the natural world than NTs and yes, I struggle with societies limitations. I get on with and communicate beautifully with other NDs and even with Allistics. Language delay and now brilliant one...wht is developing ahead of that and why? Anything early? More advanced? You are isolating things and fail miserably in a hoistic view and understanding.

Around 55:40, the mother says, ‘I personally believe he was saved by being autistic because he didn’t need emotional connections in the same way that a neurotypical child would have in order to survive what he went through.’ I have noted that this is framed as a personal belief and opinion, but that does not mean this opinion is above critique. In fact, this is a very problematic and harmful idea. It is a gross and false assumption that autistic people have less need for emotional connection. Perhaps we need less quantity of emotional connection, but that should absolutely not be construed as little need or no need. An example from my own life is my mother often describing to me and others how I was a ‘good baby’ because ‘I never cried’. Neurotypical babies cry loudly and often. I was unable to express my needs in such a way, but to assume that because I couldn’t cry, those needs were nonexistent, is so wrong and damaging. Autistic people desperately need emotional connection. Autistic people are desperate to have their needs recognized and met even when, and especially because, we can’t always express our needs. We need as much care and connection from our parents as any other human being because that's exactly what we are. Human beings. I am incredibly grateful to Simon Baron-Cohen for finally acknowledging and addressing these concerns and beginning to engage with the autistic community in this way. It was very healing to see Becca on this panel. We have so much more work to do and this feels like a real beginning. Thank you.

I have a 19 year old autistic son and he is amazing. His brain is wired differently but aren't we all. I had to remove him from special education learning because it was doing more harm than good. I would also not suggest Autism Spectrum to parralle LGBTQIA+ by any means.

I wonder if sign language can help those who can't express verbally.

I was diagnosed at 52 .

At 37:27, in the past, undiagnosed people might have become addicted to behaviors or substances to deal with excruciating pain.

*

BTW what IS the reason for wanting to know the cause?

First-preference data has usually been towards males. Not just for autism.

It bugs me that some people contribute nothing to the research except hot air and demands. Past generations of afflicted individuals and their families contributed blood samples, completed questionnaires, donated their brains, and participated in studies for the sake of advancing knowledge for the good of future generations without first calculating "what do I get out of this?"

42:00 if there are no supports, and you want to be "centered", does it not make sense for ASD individuals to use these chats to organize and build the infrastructure, world~wide, for support!

Moving the research to people who are part of the research group is one thing, but also increases the chances of 'normalizing' the condition, which is not necessarily a good thing IMHO

Given that so many symptoms and genes have already been implicated in the expression of autism, I assume that the same interesting gender differences underlie autism as for many other (epi)genetic conditions. My intuition states that some of the genes on the Y chromosome are responsible for either malfunctions or susceptibility to epigenetic tweaks. Meanwhile genes on the X chromosome regulating other functions have not the duplication (in genetic males) of two X chromosomes that can provide at least one optimally functional gene given the person's environment or in the case of problematic mutation of said gene on one of the X chromosomes. I suspect that some of the symptoms and behaviors most identified as autistic trace to these chromosomal differences that happen to be readily identifiable among males more than females-that we focus overly on certain expressions of autism while ignoring more universal or XX expressions, resulting in underdiagnosing females even while they may indeed have a lower incidence of autism. And of course social enforcement of gender roles is likely to impose stress on the individuals inclined not to conform, further triggering epigenetic and psychological alterations differently. In my Sociology BA program, our required research methods course dedicated substantial time to ethical study of human subjects. I'm inclined to believe that biological sciences tend not to teach as much about it given the more tangible, visible damage potential.

Autism runs in families? It practically sprints in mine

Taking care of an autistic son is like taking care of a terrible-two for 20 some years. It builds you or breaks you. My own experience. The suffering and hopelessness of the patents should not be ignored.

Strange term "genetic lottery". If people chose who they will have a baby with and in what kind of environment ,if women have choice to give birth or abort the fetus, is it still a lottery ?

THEIR IS NO AUDIO.

I don't understand why it's so contentious to allow prenatal screening of developmental disorders. You are taking choices away from women about their lives and families. Does no one consider that perhaps the reason depression is so high among autistics is because they were born into families that do not have the emotional/physical/financial capacity to care for them?

Apple colour doesn't determine whether it's fit for purpose.

my other brother from another mother was dianosed with autism at 65. ( of course i'm blind epileptic and have cbs. 0-) so.. wt good would autism do to me right?? lmao .. 'have a nice day' yeah.. what's controversial is that since i had 1/3 my brain 43moved we now know that the brain can comepleatly rewire itself and that was just a compule decades ago..... 'this is a time of great termoil in these issue??' people don't care', compared to 20 other issues', i'm sorry. depeends on how much it effects 'ypir life'. and "as the state' / genetics, data/testing, will be screened out.'.. ( yes the autistic are 'undr pressure', but, 'are they acturally, 'the creatives'?? or just the really hard children to raise!??! (because i'm a medical discovery *(unforeseeable ) but 'if you could get rid of 'living in/out of 'that diagnosis box', we all strugle, -how much-

Did being exposed to the periodic table excel my autism to an unhealthy rate,

The social world is full of patterns.

He lost all credibility when spoke against getting a diagnosis. WTF? And then again when he said "we all have autistic traits." Not true. And, it's an idea the autistic community seems to fight against.

90% chance: if a girl was lining up toys, it wouldn't be called intelligent, it would be called unimaginative and dull. Camouflaging/Masking = fawning (as in Fight, Flight, Freeze, or Fawn!). 7:25 If the face looks frightening to their supersensitive eyes and mind, of course they would prefer to look at geometric shapes. Systems could include Social Sciences like Psychology. I think the STEM fields are picked by people who want to work with things and ideas, not people. 23 and Me ... in 2023!

Im autistic, and all what I've heard was pure cringe

I don't know how to feel about Simon. He has done more damage to neurodivergent communities than anyone else. How he spent so much time with autistic people and still can't actually see them. It seems really a hard sell for me to trust his insights. In his book patterns seekers he says animals don't think like human toddlers. Does he have dog, cat or even rabbit? All of my animals think like toddlers. He seems painfully not observant to the world.

How about we accept that not everyone is the same! Sick of this! People getting rich on building theories, that ultimately divide us. I think this is the equivalent of asking how many angels you can fit on the head of a pin!

When he says consultation with the "autistic community" he doesnt mean tumblr?