The Autism Curve

https://www.bbc.co.uk/programmes/m002bszl

13:45 to 14:00,

Monday 05 May to Friday 09 May,

BBC Radio 4.

1. The Data.

What do the data showing a steep rise in autism diagnoses reveal - and hide?

A 20-year study in the UK showed an astonishing eightfold rise in new autism diagnoses on an exponential curve. We hear from the study’s author Ginny Russell and ask how the numbers compare in other parts of the world. And Professor Joshua Stott explains how a surprising discovery at a dementia clinic led him to calculate that that enormous rise in diagnoses may still undercount the country’s autistic population by as much as 1.2 million.

2. The Past.

How has autism changed to include those - like women - who were previously missed?

To make sense of the steep upwards curve in autism diagnoses, we go back to the start, to understand who we counted then compared with now. Professor Francesca Happé describes the evolution and expansion of the definition of autism, including the role played by Hans Asperger and controversy around his alleged Nazi sympathies. And we hear from Sarah Henrdrickx, author of Women and Girls on the Autism Spectrum, about how women have been misdiagnosed with mental health conditions rather than autism; and from education consultant Frances Akinde about the experience of autistic people in ethnic minority groups.

3. The Science.

What’s the evidence that there’s been a rise not just in diagnosis, but in autism itself?

We’ve heard that the exponential trend in autism diagnosis can be explained in large part, at least, by a widening definition and the diagnosis of groups - like women - who were previously missed. But could the amount of underlying autism also be rising? And if so, why? Professor Francesca Happé explains the role of genetics, environmental factors, and vaccine scares. And Ginny Russell, author of The Rise of Autism, talks through her research into the plausibility of various causes that people claim are behind a real rise in autism.

4. The Identity.

Autism today is not just medical but political. So who gets to decide who‘s autistic?

The neurodiversity movement has given autistic people a voice in discussions about autism and its growing diagnosis for the first time. Ari Ne’eman, who co-founded the Autistic Self Advocacy Network, describes how he wanted to push back against groups run by the parents of autistic children, which advocated “pseudoscientific treatments and cures”. Today, people like Ellie Middleton, an autistic and ADHD content creator, celebrate their autistic identity online, inspiring others to self-diagnose. Are sceptics right to suspect a social media fad?

5. The Spectrum.

Has the idea of autism expanded so far that it’s breaking?

The rapid upwards curve in autism diagnoses and a social media-fuelled trend for self-diagnosis have led to tension. Autism’s centre of gravity has shifted: now those without an intellectual disability are most visible. But where does that leave autistic people who do have an intellectual disability and who could also be non-speaking? Who speaks for them? And what is diagnosis for anyway?

Parents
  • Interesting post! I’m self realised (accidentally read the characteristics of autism in women and it hit me, how much it’s relatable to me - like 80% of that description was me).

    First I denied that and closed that topic but then I heard that again. I didn’t think I need help until I started having problems again. Going to mental health professionals and getting dx with meds was nothing new to me. I suspected being autistic but decided to not tell that the doctor, just describe my problems with my own words and pictures. I thought it’s better to not start with “I suspect being autistic”, because maybe I was wrong. So it’s better to hear from the doctor what do they see. And it turned out the doctor sees the same. It’s not an official dx, the therapy is ongoing so I don’t know how it will end up. What I don’t like about the social media trend is trying to make autism, adhd and Tourette  a trendy thing and also statements that this is not a disorder or disability. By these statements suffer those who suffer most. As a kid I used to think that I’m kinda a bit disabled, but not as much as people with severe intellectual disabilities or people on wheelchair, that’s why nobody ever paid a bit attention to me and nobody listened what I wanted to say, I just had to conform and not complain. 
    not everything on social media about autism is bad, I found some creators that explain things good, like Paul Micalleff, also found recently a creator Autistic AF and one German YouTuber and book author Tom Harrendorf. I Read his book but I’m not sure if I can finish, his experience is so similar to mine although I’m female, that i can’t read further. 
    I’m not sure if the term ‘self diagnosis’ is correct, because we are not professionals, but self realisation would be more accurate in my opinion- we discover, that the symptoms of autism fit our life experience and personality and it explains a lot of our struggles. By discovering it we start analysing things and we may find some solutions, also join online communities which is important for someone who feels alienated in this world. 

Reply
  • Interesting post! I’m self realised (accidentally read the characteristics of autism in women and it hit me, how much it’s relatable to me - like 80% of that description was me).

    First I denied that and closed that topic but then I heard that again. I didn’t think I need help until I started having problems again. Going to mental health professionals and getting dx with meds was nothing new to me. I suspected being autistic but decided to not tell that the doctor, just describe my problems with my own words and pictures. I thought it’s better to not start with “I suspect being autistic”, because maybe I was wrong. So it’s better to hear from the doctor what do they see. And it turned out the doctor sees the same. It’s not an official dx, the therapy is ongoing so I don’t know how it will end up. What I don’t like about the social media trend is trying to make autism, adhd and Tourette  a trendy thing and also statements that this is not a disorder or disability. By these statements suffer those who suffer most. As a kid I used to think that I’m kinda a bit disabled, but not as much as people with severe intellectual disabilities or people on wheelchair, that’s why nobody ever paid a bit attention to me and nobody listened what I wanted to say, I just had to conform and not complain. 
    not everything on social media about autism is bad, I found some creators that explain things good, like Paul Micalleff, also found recently a creator Autistic AF and one German YouTuber and book author Tom Harrendorf. I Read his book but I’m not sure if I can finish, his experience is so similar to mine although I’m female, that i can’t read further. 
    I’m not sure if the term ‘self diagnosis’ is correct, because we are not professionals, but self realisation would be more accurate in my opinion- we discover, that the symptoms of autism fit our life experience and personality and it explains a lot of our struggles. By discovering it we start analysing things and we may find some solutions, also join online communities which is important for someone who feels alienated in this world. 

Children
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