Changes in the Concept of Autism - Francesca Happé CBE

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.

Access to information, via YouTube, Tiktok, etc., is why so many of us are realizing that we were missed. Armed with this new knowledge, life suddenly makes sense.

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legitimacy of my self-diagnosis every time I talk about it to a medical professional, because most of them have such outdated information.

Almost 40, untreated/ undiagnosed- just discovering my neurodiversity 😭 it was never just anxiety/depression

“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”. 😮

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.

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.

I got diagnosed at 30, and it's made my life much more prosperous, peaceful, and clear.

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 !

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 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.

The rigid and repetitive behavior is BECAUSE OF the sensory overload.

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.

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.

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.

It would be helpful to include PDA in talking of social problems

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.

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.

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".

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.