Tuesday, March 3, 2020

In Self-Advocacy, Balance is Crucial (Alyssa)

TW: cults, extremism, mention of anti-vaxxers, Autism Moms™️, and aspergers

One of my interests is analyzing cults and cult-like mindsets. I worry sometimes about how there is risk of extremist thinking on different sides of the conversation around autism, i.e. Autism Mom's™️ and anti-vaxxers, but also even in groups with fellow autistics.

I'm noticing a trend in some corners of Facebook where autistics are policing each other's language and tearing down other autistic self-advocates for not advocating "perfectly" or to their expectations.


I have stopped using the term Asperger's in most of my advocacy work due to its controversial history, but I disagree with the practice of completely banning the term from being uttered. "Asperger's" is useful as a shorthand in some circles as a way of describing a particular type of autistic experience, to those who may not share that experience or have exposure to Autistic culture on a daily basis.

Of course, it's not a diagnosis anymore in the US, so I don't use it as a diagnostic label in spite of the fact that it was my original diagnosis. It took some getting used to, but I am happily adjusted to calling myself Autistic.

Along with banning "Asperger's" from people's vocabulary, I also disagree with outright attacking people who self-identify as having Asperger's (NOT including aspie supremacists), especially if they are from other countries as it's still a diagnosis outside the US. 

For some, it was their original diagnosis and helped validate them as "not broken," giving them a name to their experience. Nowadays, "Autistic" serves the same function, but those many grew up (at any age) with an Asperger's diagnosis can't easily erase the term from their vocabulary or memory.

There is also the issue of placing stigma upon those with the Asperger's diagnosis, when instead, that should be directed at Hans Asperger and his nazi ties. The people with the diagnosis didn't do anything wrong.


I know most of the autistic community (including me) prefers identity-first language ("autistic person") and rejects the puzzle piece symbol. I understand the problematic history behind the puzzle piece and person-first language ("person with autism") and absolutely believe we should educate people about it, and adapt identity-first language and the Neurodiversity infinity twist symbol as the default.

But is it right to mandate that every autistic person adopts the same symbols and identify the same way?

Some still like the puzzle piece symbol and prefer person-first language. Perhaps they were brought up with the medical model of autism, like many of us were, and are not yet aware of the Neurodiversity Movement (which tends to favor identity-first language and the infinity twist symbol).
(It's worth noting that a very small minority of autistics who are aligned with Neurodiversity do have a preference for PFL and the puzzle piece.)

I'll educate the unaware on my viewpoint, especially regarding the puzzle piece's connection to Autism Speaks and other stigmatizing organizations, but I'm not gonna demand that they identify the same way I do. It really feels... extreme and a bit cult-ish for me to have such expectations.

They might be in a different place in their journey of self-acceptance, or coming from a different perspective, and I want to respect that.


There is also immense pressure on autistic self-advocates to advocate "perfectly" according to specific expectations, and a trend of punishing them for being politically incorrect or making a mistake. For instance, Jaime Heidel (The Articulate Autistic) had a wonderfully helpful Facebook page facilitating conversations between ND and NT folks. I thought it was reasonable and well-balanced.

Her page is now gone because she made an unintentionally racist statement in her post.

I'm not justifying her comment or the impact it left, but it was just one infraction on her largely helpful page. I'm not sure exactly what went down, whether she removed the page herself or others got it shut down, but the complete removal of her page seemed too drastic for her error.

She absolutely needed to be held accountable, but she was bullied and harassed off Facebook before she got the chance to make amends.

These trends are seeming increasingly similar to what I've seen in some SJW and extremist leftist groups (for the record, I'm left-leaning and do acknowledge that this happens on both sides of the political spectrum). Vicious attacks, blocking and banning due to differing opinions on language/approach, raiding people's personal Facebooks, violent posts and threats, rejecting reasonable criticism, and doxxing. These are all Very Bad Things™️ and we should aim to avoid them.

Let's do our best to respect our fellow autistics, and--dare I say it--even NT's, and aim to make positive change by reasonable approaches. It's helpful to get all sides of the story and be critical (even of our own ideas) without being dismissive, disrespectful or aggressive. We're stuck on this planet together so we may as well try to find ways to get along.


(Special thanks to Adam of Differently Wired


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