Autistic Community and the Neurodiversity Movement: Stories from the Frontline

by Steven K. Kapp (Editor), Morénike Giwa Onaiwu (Contributor)

This open access book marks the first historical overview of the autism rights branch of the neurodiversity movement, describing the activities and rationales of key leaders in their own words since it organized into a unique community in 1992. Sandwiched by editorial chapters that include critical analysis, the book contains 19 chapters by 21 authors about the forming of the autistic community and neurodiversity movement, progress in their influence on the broader autism community and field, and their possible threshold of the advocacy establishment. The actions covered are legendary in the autistic community, including manifestos such as “Don’t Mourn for Us”, mailing lists, websites or webpages, conferences, issue campaigns, academic project and journal, a book, and advisory roles. These actions have shifted the landscape toward viewing autism in social terms of human rights and identity to accept, rather than as a medical collection of deficits and symptoms to cure.

Genres: Autistic Spectrum Disorder, Nonfiction, Psychology, Disability Studies, Reference, History, Disability

313 pages, Kindle Edition

Published November 7, 2020

Reviews

[Stephanie · Rating 4 out of 5]

This is an important set of essays examining the development of the autistic community and its links with the broader neurodiversity movement. The historical context up until the present day will be extremely useful for anyone studying this academically in the future. As an autistic advocate myself, I found this an important history of the movement I'm involved in.

Due to the nature of the collection, there was some repetition, and naturally, some things I disagreed with also. This is a history of a movement that has many opponents, sadly. There are many sides in the "debate" around autism and thus something that is titled and marketed in such a way that it seems representative of one side in this conflict needs to be examined for its politics.

The inclusion of a chapter on the UK Labour Party's neurodiversity manifesto naturally and unavoidably introduces party politics into the book. It also, in the mention and endorsement of certain individuals, strays into internal factionalism within that party. While it is an important milestone for a party to have committed itself to neurodiversity in this manner, and should rightly be included, there ought to be an acknowledgement of the party political nature of that chapter to readers based in the UK.

My other main criticism is the endorsement of working with UK organisation Autistica, without acknowledgement of the harm they continue to do to this day. They were initially founded as the UK's branch of Autism Speaks, and though this is acknowledged and tackled, there is a belief put forward that they have changed; however the evidence does not suggest this. People are being harmed by them to this day and in a book that will be considered a handbook to the neurodiversity movement, there needs to be an acknowledgement of this.

[Susan H · Rating 5 out of 5]

Vital and fascinating set of essays on the emergence of the neurodiversity movement and how autistic people have begin to tell our own stories and shape political change.

[Kat Williams · Rating 5 out of 5]

This is a comprehensive book in which (mostly) Autistic (including non-speaking) members of the Neurodiversity Movement write about how they, and the organisations they work with, have contributed to creating a world which better caters for Autistic people's needs.

While this book chronicles the Neurodiversity Movement, there aren't any entries which come from outside the autism world. While the title is prefaced with 'Autistic Community' so this shouldn't come as a shock, it would be good to see a similar piece of work which includes a wider range of contributions from people with other Neurodivergences (NDs). That said, there are contributors (such as Monique Craine) who have multiple NDs, therefore there is some representation.

I agree with Kapp's decision to edit with a light touch so that each author's style isn't lost and NDs (such as dyslexia) are not hidden, it did mean I enjoyed reading some chapters more than others, despite each having an interesting subject matter. There were some author's styles I just didn't get on with, but I haven't dropped the star rating because they held my attention, and I think that it's a personal preference matter rather than because they were inherently 'worse' than the chapters I enjoyed reading more.

I learned a lot of history about the Autistic community which I didn't know, such as the Autistic involvement in the DSM-5 revisions, and I was impressed with how involved we've been in some incredibly important pieces of work - truly nothing about us without us.

I was fortunate to be involved in a webinar this week hosted by the European Council of Autistic People through my director's role with Autistic UK, and a number of authors and organisations from the book were also in attendance. I'm looking forward to working with them in the future, perhaps as we pioneer the next big positive change for Neurodivergent people in Europe.

If you're interested in either the Autistic or Neurodiversity Movements, I highly recommend you read this book. If you're a teacher, medic, work in government or third sector roles steering policy, or are an autism (or other ND) researcher, you *should* read this book to help you understand why we repeat: Nothing About Us Without Us.

[Tesla Ranger · Rating 3 out of 5]

A good synopsis of the origins of the ND activist movement

[Beth · Rating 3 out of 5]

I felt these essays broadened my sense of autism and how our society interacts with it.