The Autism Curve

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.

I don't usually listen to podcasts, but just started listening - thank you !

Thank you for posting all this information Dormouse.

I haven’t yet listened to any of the programmes or read the book,  but hope to begin tomorrow.

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

4. The Identity:

A National Autistic Society video about identity and intersectionality and the different types of language used within the autistic community:

m.youtube.com/watch

3. The Science:

"The Rise of Autism: Risk and Resistance in the Age of Diagnosis"

By Ginny Russell, Routledge, 15 Dec 2020 - 202 pages.

The Open Access version of this book, available at

http://www.taylorfrancis.com/books/e/9780429285912

has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives 4.0 license.

"This innovative book addresses the question of why increasing numbers of people are being diagnosed with autism since the 1990s. Providing an engaging account of competing and widely debated explanations, it investigates how these have led to differing interpretations of the same data. Crucially, the author argues that the increased use of autism diagnosis is due to medicalisation across the life course, whilst holding open the possibility that the rise may also be partly accounted for by modern-day environmental exposures, again, across the life course.

A further focus of the book is not on whether autism itself is valid as a diagnostic category, but whether and how it is useful as a diagnostic category, and how the utility of the diagnosis has contributed to the rise. This serves to move beyond the question of whether diagnoses are 'real' or social constructions, and instead asks: who do diagnoses serve to benefit, and at what cost do they come?

The book will appeal to clinicians and health professionals, as well as medical researchers, who are interested in a review of the data which demonstrates the rising use of autism as a diagnosis, and an analysis of the reasons why this has occurred. Providing theory through which to interpret the expanding application of the diagnosis and the broadening of autism as a concept, it will also be of interest to scholars and students of sociology, philosophy, psychiatry, psychology, social work, disability studies and childhood studies."

2. The Past:

On today's radio programme; Education consultant Frances Akinde will talk about the experience of autistic people in ethnic minority groups (Frances is an ex-Head Teacher) and has published a book: "Be an Ally, not a Bystander: Allyship lessons for 7-12 year olds".  "What is an Ally? What is Allyship? Why should we teach it in primary schools?  Allyship is many things. It is empathy, community, action, positivity, inclusion, anti-racism, aspiration and more. Allyship is learning about diversity and difference and making a conscious choice to support those who are marginalised."

On this theme (the experience of autistic people in ethnic minority groups); I have been reading a book which educates about the experiences of Black Autistic young people: "Autistic and Black" By Kala Allen Omeiza.

"It's time we bring forward Black autistic pain points and celebrate the triumphs of ourselves, family members, and organizations that care for these individuals. Through following the real stories of others from around the world, I hope fellow Black and autistic individuals will be empowered to realize that being Black and autistic is enough."

"In this powerful insight into the lives of Black autistic people, Kala Allen Omeiza brings together a community of voices from across the world, spanning religions, sexuality and social economic status to provide a deep and rich understanding of what it means to be autistic and Black".

The book highlights the lived experience of 20 Black Autistic young people - drawn from different communities and countries.

DormouseAtRest_25 

Hi. Thanks so much for posting this article. Looks interesting. I will take a more in depth look later on today. Just need to remind myself somewhat about the statistical methods.

What  interests me particularly are the numbers in the up to age 8 age group in 2018. And how these compare to the numbers in the over 19 group in 2018. Then we could get an estimate of what is happening to the identiifcation within the population within those subsets. 

At least something to challenge the headline that is quoted in the news article as below.

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. 

1. The Data:

The Ginny Russell et al. article "Time trends in autism diagnosis over 20 years: a UK population-based cohort study" (2021)

acamh.onlinelibrary.wiley.com/.../jcpp.13505

The headline is making claims without providing data. Also, it is referring to people who are neurodivergent, which in theory could mean that they are all dyslexic and/or any other type of neurodiversity rather than autistic. There are other figures claimed in the article but it doesn’t seem to be based on hard facts. 

I think the only place Majority is mentioned is in the headline not in the article.  I very much doubt there's any evidence to this - if so there would be some numbers.  Just creative journalism 

Thanks for posting as articles like this - aren't serving us well at the moment 

https://www.lbc.co.uk/news/health/majority-in-britain-self-identify-as-neurodivergent/

This arrived on my Apple News Feed. Does the show really say we are in the majority now?

I think that this headline will be used against us. To argue that we do not in fact exist. And that everyone is a little bit on the spectrum.

Please advise. xx

Thank you for the useful summary.

You have inspired me to take notes when I listen to the episodes. It will be useful to keep the relevant arguments and responses, alongside my own thoughts to hand. 

Martin said:

All diagnoses of autism have the caveat that the autistic traits exhibited need to have a substantial impact on a person's day to day functioning.

I think this is forgotten sometimes including by me when I beat myself up for declining social things or walk out of a cafe because they are playing music etc etc etc.

All diagnoses of autism have the caveat that the autistic traits exhibited need to have a substantial impact on a person's day to day functioning. This can be anything from being unable to do things because of sensory reactions - like having to get off a bus at a random stop because someones's perfume is unbearably strong - not being able to follow conversations if there is background noise, to executive function issues - if a meeting or appointment is cancelled at short notice, being unable to do anything else useful for an hour.

I think that if this stricture on autism diagnosis is followed by clinicians, then overdiagnosis is not a major problem.

As autistic people with profound difficulties cannot advocate for themselves then others have to. A surprising number of autistic advocates do advocate for those who have no ability to do so for themselves. Clinicians and family members are also active on their behalf. Just because 'societally functioning' autistic people have found a voice, it does not mean that those without a voice are disadvantaged as a result.

www.bbc.co.uk/.../cvgp08z3egno

Thank you for sharing this.

Often on this forum I read very positive statements about autism but I tend to put them into this context:

DormouseAtRest_25 said:

But where does that leave autistic people who do have an intellectual disability and who could also be non-speaking? Who speaks for them?