186. Death by Labels

I will never not think of Feda and Muhammed, whom I have referenced in blog posts 182 and 185. They were a mother and autistic son in California who died when their house caught fire, and Muhammed was too scared to leave the house.

Feda was well known for many autism related projects, one of which was the National Council on Severe Autism. Admittedly, amongst autistic self advocates, it is controversial to separate out “types” of autism; self advocates are also opposed to labels about functioning, such as calling someone who is severely autistic “low functioning;” or conversely, saying that another person is “high functioning,” overlooking, not just the strengths that any individual autistic person might have, but how much even the most self sufficient of folks might have to work to function, or, sadly, to mask their coping strategies, thus rendering needed supports inaccessible. As Kat Williams writes in an article called “The Fallacy of Functioning Labels,” ” ‘High functioning’ is not how an autistic person experiences being autistic, it’s how society experiences the autistic person.” Williams also notes that one person can be all those things, depending on whether their needs are being addressed.

As far as I understand it, self advocates prefer that we use a strengths and needs-based language, which allows us to reshape how autistic people are perceived and treated. So basically, someone is only “not functioning” because their needs have not been met. A might be described as a non-speaking autistic teenager, who uses an assistive communication device, requires assistance with life skills, and engages in stimming. Will descriptors such as these gain him access to services? As it stands today, no, they will not. But we have to see differently–that they only do not give him access because it is neurotypical people who write the language of diagnosis, insurance coding, therapeutic modalities, and social services. That has to change. And until it does, we are stuck with appalling language when it comes to navigating what our kids need. How dehumanizing for them, to listen to their parents and doctors and teachers use such ignorant and dismissive labels.

Why is all this important? Because, unless we learn to be more nuanced in how we perceive autism, we risk snatching away people’s autonomy. It really is that stark. How we view autism decides how we are even going to educate them, which environments we will expose them to, how much support we will enable, how much agency we will grant, who will be in their lives, and what will be the quality of those lives.

In our family, we have the whole gamut of autism needs. I am finally awakening to how long it took me to realize that I had placed my kids on either end of this notion of a “spectrum” because that was the language and conceptualization that was presented to me by default. It makes me sad to see how, either way, the search for supports is a fight. For one child, it is because it is so challenging to get his needs met, and for the other, he is often not believed. It is enraging.

Furthermore, this nonsense pretty much necessitates a parent sticking their oar in. So we get lambasted from both sides–both by the medical and educational powers that be, and by autistic self advocates, who see our intervention as damaging. Anyone who doubts that language determines everything truly needs to experience such interactions to get a sense of what is involved. And we have to learn it, or yes, we do become the problem.

Back to the National Council on Severe Autism, which, even though it wades into the murky waters of pushing against self advocates’ attempts to shape the language of labels, does do some great work as far as highlighting what is really lacking in infrastructure for individuals and their families. We are very isolated by these circumstances, but a lot of that is due to a lack of societal focus on people with intensely challenging needs. If, in our use of language, we diminish or underemphasize said needs, we are doing our kids a grave disservice also.

After Feda and Muhammed, died, NCSA published an article by Lee Wachtel called “Death by Severe Autism.” Extreme as the image might be, one thing stood out to me: when Wachtel, a psychiatrist, wrote about how Feda could not get Muhammed out of the house despite the danger. He could not make himself do it:

“I had the chilling recognition that these two incredible people died a horrific death precisely because a severely autistic and intellectually disabled kid was unable to transition from point A to point B.”

Wachtel is not wrong. At all. The fact that all of us doing this kind of parenting know that it could have been us proves the point too.

My mind immediately came up with some caveats, though, namely

One: Even someone considered “mildly” autistic can freeze up, with very grave consequences. Sexual assault comes to mind. School bullying. Trying to perform to neurotypical standards, including that of teachers, doctors, and community members. Kids like mine being yelled at by desi elders, or excluded by so many of their amazingly excelling desi peers. And so many more scenarios.

Two: If we had more options for communal living even as families, maybe we would not be so alone when crises occur, and there would be more people around instead of overextended parents having to become experts at nursing care, defusing physical aggression, mitigating property damage, multifaceted vigilance, and yes, fire safety.

Three: In the insistence that we use terms like “severe” and “lower IQ” etc, I feel that nothing shifts. Most of us are still patching together frayed resources on our own. Communities have not yielded to the distinction, and stepped up to make changes that might improve our family lives. We are still doing what we do, making the same impassioned pleas over and over. For what?

I learn so much from the writings of self advocates, and besides that, drawing a distinction is like saying that R and A have no common cause. I DO NOT ACCEPT THAT. Talking to R also teaches me ways to shift my thinking about how to be present in A’s life. None of that would be possible if we viewed their diagnoses as having some wall between them.

The autistic self advocate Nikki Boucher said on her Facebook page how she does not perceive herself as having an inner voice that persists. Because of this, and other disabilities, she needs someone to help her with life skills, and with staying on task. I feel like we need these glimpses into how various self advocates (and I include R here–in trying to respect his privacy, I often omit how much his amazing explanations and insights guide me to be more thoughtful) describe themselves; otherwise we might never ask ourselves how much our abled ideas of disability are standing in the way. How much we might be gatekeeping, even if from a place of love. Even a query like “Is behavior based therapy really not the way forward?” might seem iconoclastic and untenable. I don’t want to be stuck in my thinking about how best to help my kids.

What do I mean by this? Well, for example, if I can get rid of the notion that working for rewards is somehow going to help A focus better, I might be more open to other solutions that help him, and also respect the things about him that are just truth. Like gravity, or how humidity transforms his and my hair into puffs of indignity. Just be present with him, and slowly, observe what he’s trying to show us about his bouncy ball brain.

Part of his truth is that it is unlikely he will ever live independently. And that’s okay. What’s important is that we place him in situations and with people who will expect the best he has to give, while respecting his mind, body, and soul. That will be easier if we can hold in our hearts how vulnerable and high needs he is, while also keeping close the idea that getting those needs met must never diminish his human rights. We are all responsible.

Radha.

Sources:

Williams, Kat. “The Fallacy of Functioning Labels.” National Centre for Mental Health, 4 Apr. 2019.

Wachtel, Lee E. “Death by Severe Autism.” National Council on Severe Autism, 19 Oct. 2020.

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