Sunday, July 7, 2024

Autistic Adults, Autism Parents, and why we seem to be arguing

I recently read I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World by Meghan Ashburn and Jules Edwards.

I am a late diagnosed Autistic Adult, and not a parent. While I can’t understand the experience of being a parent, I do have memories of my own childhood and interacting with adults that have only made sense in recent years as I've learned about Autism (and Allism).

When I heard about the book in July 2023 I added it to a goodreads list. I had what turns out to be a misconception that the book would be a debate between an “Autism Mom” (Allistic parent who thought of Autism as a disease that took their child, and who wanted sympathy for themselves and their hardships) and an “Autistic Mom of Autistic Children'' (who can remember how it felt to be treated as diseased by others). 

As an Autistic Adult I was going to read feeling like I was rooting for one of the "sides".

Spoiler: I was wrong!

I will keep this strong book recommendation as brief as I can, given there are many ways this book intersects with other learning I have been doing in the past few years.

My journey

My understanding of my own autism came in a very fortunate and privileged way. Starting in 2020 I started what I have come to understand as a “special interest” when I recognized I didn’t actually understand what Racism was.

Learning about Racism led me to learning about Anti-racism (Ibram X. Kendi), anti-colonialism/decolonization and intersectionality. I am a systems person, so I wasn’t stuck on individuals and individualism (and the myth racism is about individual racial prejudices) once I had done sufficient reading.

I had opportunities to learn, but being White has the privilege of racism being academic as real racism (as opposed to individual prejudices) will privilege rather than target individuals included in “Whiteness”. I am now aware so-called “Reverse Racism” isn’t a real thing.

While I have been in a so-called "mixed marriage" since 1997 (different races, different genders, etc), that lived experience does not in any way ensure someone understands what Racism is.

I had quite a bit of unlearning to do.

When I started to learn about Autism and other neurotypes I immediately recognized it as fitting within an intersectionality lens.

I do not accept the “medical model” around Autism any more than I accept the “medical model” around Race (IE: the pseudoscientific beliefs around scientific racism, eugenics, etc), gender or sexual orientation. (Note: Conversion Therapy for gender or sexual orientation was only outlawed under Canadian law in 2022, but similar techniques are still the most common alleged "treatment" for Autism) 

Depending on the audience, I see value in discussing two different models of understanding Autism.

  • The Social model of disability. I don’t see my Autism as what disables me, but how my differences aren’t accommodated in a society that incorrectly presumes there is only one “correct” way of being a human. This is what reduces my ability (dis ability) to participate.
  • Neurodiversity Paradigm, which sees neurotypes as being as a natural form of human diversity. Problems are generated by supremacist societies who "other"/exclude individuals and groups with different demographic traits.

The Authors

I believe intersectionality and specific lived experience meant that while these two mothers seemed to disagree at first, that neither actually represented the “Autism Mom” which I have observed online.

While one of the authors is a White Allistic mother, she is a mother in a mixed race family and knows what it feels like to be extra worried about police and other “authority” interactions with brown and black children. She taught elementary school for six years, and was already well-versed in developmentally appropriate practices. The other author is Anishinaabe, and has lived with cultural teachings that are quite different from Eurocentric colonial teachings.

Both authors approach this topic with an intersectionality lens.

Why the disagreement?

The book brings to the foreground something that everyone, regardless of their neurotype or if they are parents, should become aware. The problem isn’t that one of these mothers was Autistic and the other was Allistic, and that this would suggest they had different goals.

The problem is that everyone in society, but especially parents, are inundated by special interest groups (political and economic) who have ideological biases towards the Medical model of Autism. They will frighten parents into believing that there is something wrong with their children (and sometimes themselves) that needs to be fixed. As with the Medical model of Race, otherwise known as scientific racism and eugenics, there are even those looking for measures to prevent additional births of Autistic people.

I believe once we recognize the common problem, that we can all work together to make the lives of Autistic children better. This will allow them to grow up without the trauma some Autistic adults constantly live with.

Eternal September

“Eternal September” is a slang term I’ve been aware of since the early 1990’s. In the early days of the Internet (and Usenet, that I participated in using UUCP) it was filled with technical people and students, where new batches of students would join in September and would need to learn how to (appropriately) interact online. In the early to mid 1990’s (depending on location), the Internet became available to the general public and thus there were “newbies” joining all the time and the need to bring these new people up to speed on how to use the tools and interact was needed.

This is going to be a fact of the Autism community for the foreseeable future. New parents of newly diagnosed children, newly diagnosed adults, and fairly often both in a short timeframe (parents learning they are autistic because of their children) will always be finding the Autism community. They will most often be coming with harmful misinformation they have been offered by the medical profession and the horribly wrong and harmful information from The Autism Industrial Complex.

We need to remember they aren’t the enemy, even if they will use words that will be very hurtful to Autistic people. As hard as it will sometimes be, especially for us Autistic members of the community, we need to help them unlearn misinformation in as welcoming a way as we can.

I continue to see similarities between affirming Autism advocacy and support, and similar supports in gender affirming, sexual orientation affirming, and even Anti-Racism work. In fact, it all feels as if the problems come from the same place: vested interests in creating a hierarchy of humanity that puts specific (often extremely arbitrary) demographic traits above others.

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