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
  • 5. The Spectrum:

    Media coverage (or representation) of Autistic people can tend to focus on a small sub set of Autistic individuals.  We are a broad spectrum community - it is important to continually broaden the range of lives and voices shared. 

    The same is true for different age groups of Autistic people - society needs greater understanding of Autistic role models drawn from every decade of our lifespans.

    What if the only Autistic person someone has ever met was an Autistic person who tended to mask most of the time?  As there are Autistic people (who have always been Autistic throughout their life) and yet they have only been identified as Autistic in a later age group - how do we help families, workplaces, healthcare and social care settings and the government adapt to that revised information and be supportive of older adults unmasking safely?

    Reasonable adjustments are not just applicable to Schools / Colleges / Universities / workplaces of an early career.  What about in the other settings / environments of an Autistic person's life?

    An example of one workplace sector sharing knowledge about assistive technology (including in support of Neurodivergent individuals).  A webinar hosted by the Solicitors Regulation Authority (SRA) "Our mission is driving confidence and trust in legal services".

    "Assistive technology in the workplace" (Compliance Officers Conference 2024): "Get practical advice and guidance on how can employers effectively use assistive technology to enhance employee wellbeing, productivity and retention. Hear from our expert panel as they explore this topic and provide practical insights from their own lived experiences."

    https://m.youtube.com/watch?v=3N-MCA05mys&pp=ygUkQWNjZXNzIHRvIHdvcmsgYXNzaXN0aXZlIHRlY2hub2xvZ3kg

    An example of understanding the employment journeys of adults with a Learning Disabilities and Autism.  In this video hosted by Essex County Council - "This series of short films demonstrate how much difference employment can make to people with learning disabilities and autism.  These stories have been taken from the ‘employment experience for people with learning disabilities and autism’ a collaborative research project between Essex County Council and Revealing Reality. Which explored the needs, motivations, and barriers to successful employment for people with learning disabilities and autism in Essex. With the ultimate goal for this research was to identify the opportunities for people with LD&A to have rewarding and meaningful employment – and getting employers across the county to see the value and benefits of doing so."

    https://m.youtube.com/watch?v=pQb4X13bAPw&pp=ygVATGVhcm5pbmcgZGlzYWJpbGl0eSBhc3Npc3RpdmUgdGVjaG5vbG9neSBhdXRpc20gYWR1bHRzIHdvcmtwbGFjZdIHCQmGCQGHKiGM7w%3D%3D

    In the video "Born Old, Never Grew Up: Autism & Aging" by Creative Autistic - themes explored include:

    - the concept of some Autistic people feeling they were "an old soul" at a young age,

    - some young Autistic people can find social contact with older generations easier than with their peer group,

    - what it can feel like to join the workforce,

    - how, as the Autistic adult decades progress; people may not feel their actual age (feeling more like they did as a younger adult),

    - how some Autistic people experience ageing,

    - the implications of the lack of research data in support of older Autistic adults,

    - the impact of a "late-ling" Autism diagnosis,

    - how scarce / inaccessible the voices of older Autistic adults can be,

    - the attitudes and concerns around elderly Autistic expectations.

    https://m.youtube.com/watch?v=MvU2rWEQmak&pp=ygUURWxkZXJseSBhbmQgYXV0aXN0aWM%3D


     

  • I can relate to the last one.

    I got on with the teachers better than the other children at school.
    But now I am quite a bit older I don't see myself as being my actual age and find myself talking to younger people.

    My perception of time and age may not be quite the same as others, I am not sure.

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