Are the Voices of the "Severely" Autistic Being Silenced?

How the medical deficit framing stifles autistic voices.

Posted Sep 10, 2019

I recently clarified how the neurodiversity paradigm can help amplify the voices of those classified as “severely” autistic. That was partly in response to the oft-repeated (but ultimately misguided) claim that adopting a neurodiversity perspective leads to overlooking and silencing those voices. Here I want to make a further suggestion—that adhering to the traditional medical deficit framing is, if anything, much more likely to contribute to the systematic silencing of “severely” autistic voices.

To begin, we need to clarify whose voices we have in mind. Most people classified as "severe" are non-verbal, and many (though certainly not all) have further cognitive or learning disabilities. Many struggle to communicate their needs, and it is often hard for others to tell how deep their comprehension of the world is. Given these factors, it is much harder to identify a representative voice or voices than it is with other minority communities.

However, there are also many people diagnosed as “severe” who can communicate—for instance, by typing. If there is anything we can reasonably conceive of as the "voice" or “voices” of the "severely" autistic, it will likely come primarily from these individuals. Of course, they cannot speak for all autistics, but it could surely be argued that they should be taken to have much greater credibility on the subject of “severe” autism than anyone else.

If it were true that neurodiversity proponents did overlook so-called "severe" autism, we would expect all those who can communicate to say that their form of autism really is an inherently tragic disorder—and thus that the neurodiversity perspective is misguided and harmful when applied to the "severe" end of the spectrum.

But this isn't the case. In fact, many of those who sit at the "severe" end of the spectrum tend to say things that are very much in line with the neurodiversity perspective. Consider Naoki Higashida, who wrote the following in his book The Reason I Jump:

“What would we do if there was some way that we could be ‘normal’? Well, I bet the people around us—our parents and teachers—would be ecstatic with joy and say, ‘Hallelujah! We’ll change them back to normal right now!’ And for ages and ages I badly wanted to be normal, too. Living with special needs is so depressing and so relentless; I used to think it’d be the best thing if I could just live my life like a normal person. But now, even if somebody developed a medicine to cure autism, I might well choose to stay as I am.

Why have I come round to thinking this way? To give the short version, I’ve learnt that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal—so we can’t know for sure what your 'normal' is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.” 

Here we see views in line with the neurodiversity position. Being against the idea that autism should be seen as inherently at odds with happiness, or as something that we should necessarily seek to cure, are some of the core neurodiversity paradigm beliefs. This is further corroborated by Tito Rajarshi Mukhopadhyay, who, in his book How Can I Talk If My Lips Don't Move? Inside My Autistic Mind, likewise laments the "sickening web of [the] belief system" that frames autism as "a disease that needs a cure."

Of course, not everyone at this end of the spectrum holds such views, and I am certainly not claiming that these quotes are sufficient to vindicate the neurodiversity perspective as such. But it is clear that many classified as "severe" do come much closer to the neurodiversity perspective than to the traditional view of autism as an inherently tragic medical pathology. 

Nonetheless, whenever someone with the "severe" diagnosis publishes their writings, a large part of the typical public response is to seek ways to discredit the author. In the case of Naoki Higashida's book I quoted above, David Michell, who helped publicize his book, has noted:

“While The Reason I Jump enjoyed a positive reception, an accusation was leveled that nobody with 'genuine' severe autism could possibly have authored such articulate prose: never mind the YouTube clips showing Naoki authoring this same articulate prose. Therefore, Naoki must have been misdiagnosed and doesn’t have autism at all; or he’s an impostor at the Asperger’s Syndrome end of the spectrum, akin to the character Sheldon Cooper in "The Big Bang Theory"; or his books are written by someone else, possibly his mother. Or me. The New York Times reviewer cautioned the translators against 'turning what we find into what we want.' (The subtext I can’t help but see here is, 'These desperate parents won’t face the fact their son is a vegetable so their objectivity is compromised.') Elsewhere, Naoki has been accused of seeking entry into the guru business. You really cannot win.”

On the one hand, it is understandable that people are wary of potential abuse, as has sometimes happened with the widely discredited method of Facilitated Communication (although also see here regarding cases where this method has worked). However, such criticisms, when directed consistently at all autistic people who can communicate independently, go beyond harmless skepticism. What emerges here is a kind of epistemic catch-22, whereby the prejudiced belief that no "severely" autistic people can think or communicate is used to dismiss all those who clearly can do so. In short, this is a paradigm example of what feminist theorists call "epistemic injustice," whereby ideas and voices of marginalized groups are systematically stifled due to stigma and prejudice.

So who is really silencing the voices of the "severely" autistic? Interestingly, I do not see many neurodiversity proponents routinely claiming that such voices are not real. Rather, it tends to be critics of the movement who, perhaps without realizing it, seem to uphold and reinforce a systematic silencing of those classified as "severe" (for a different example, see the case discussed here).

Ultimately, it is not hard to see how the underlying deficit framing itself contributes to this trend: by reducing autism to tragic and inherently harmful functional impairments that severely disable thought and speech, the very idea that someone classified as "severe" has anything to say is rendered unthinkable—even when the evidence is there for all to see.