No one questions putting Greta Thunberg’s autism in the limelight. It must be the same for all forms of autism, writes Tom Clements.
High functioning autism, represented here by Greta Thunberg, and low functioning autism, represented by the author’s brother Jack, both deserve places in the public consciousness. “For all practical purposes, these manifest as two completely distinct conditions, despite the ‘autism’ label".”
By Tom Clements
Autism, like any disability, varies considerably in its severity. Whilst some people have visual impairment, for example, others are completely blind. But as certain sections of the advocacy community reject the descriptors of “mild” and “severe” autism as overly medicalising and discriminatory, the vast majority of us acknowledge that distinctions between higher and lower levels of impairment are simply a reflection of reality. Of course, that’s not to say that such descriptors convey the entire truth of an autistic individual’s experience and nor does it mean that those with mild autism necessarily have an easier time of it. In fact, in certain respects those with mild autism often suffer to a greater degree psychologically, not least because they often possess far greater insight into their condition and are more intensely aware of haunting feelings of loneliness and inadequacy.
Nevertheless, the characteristics can be like polar opposites: a highly articulate and strategic Aspie like Greta Thunberg on one hand, and those who can barely utter a single word or attend to their basic needs, like my younger brother Jack, on the other. For all practical purposes, these manifest as two completely distinct conditions, despite the “autism” label.
The recent drive by neurodiversity advocates to discard functioning labels has led to some absurdly counterfactual statements by certain self-advocates about the nature of autism itself. The refrain that “all autistic people are equally autistic” is often repeated nowadays on social media, despite of course being demonstrably untrue. San Francisco-based advocate John Marble, a prominent neurodiversity proponent and erstwhile advisor to Barack Obama, even went so far as to say in a now infamous tweet that “THERE’S NO SUCH THING AS SEVERE AUTISM, just as there’s no such thing as ‘severe homosexuality’ or ‘severe blackness.’”
Yes, the notion that all human life is of equal worth is, and must remain, the foundational principle of our civilisation as underpinned by Western Englightenment values. However, it is biology and not “systemic ableism” or some other external bogeyman that gives birth to the endless inequalities of functional outcomes we see among human beings. To admit that some people are less capable or intelligent than others might not be to everyone’s taste, but functional inequality is an obvious, conspicuous truth, particularly in autism.
“To deny (severe autism) is potentially very dangerous as it paints a false image of the condition that could lead to policymaking that is counterproductive to the needs of the severely affected. ”
To deny this, regardless of whether the intentions behind such a denial are good or bad, is potentially very dangerous as it paints a false image of the condition that could lead to policymaking that is counterproductive to the needs of the severely affected. One such belief, championed by the likes of the Autistic Self-Advocacy Network, is that all autistic people, even those with substantial cognitive and verbal impairment, fare better when treated as “merely different” and thus not in need of specialized forms of housing, supervision, employment and day activities. Conflicts with neighbours, susceptibility to elopement and an unhealthy absence of structure and supervision naturally renders such a prospect terrifying to many parents of children and adult-children on the severe end of the spectrum. Ignoring the vast gulf between mildly autistic people capable of independent living and severely autistic people who are heavily reliant on others, and often possessed of dangerous and disruptive behaviours, threatens the latter with virtual abandonment.
The crusade to abolish pathologising terms from autism discourse coincides with the more recent drive to censor video evidence of severe autism. For example, a petition started 3 months ago calling for YouTube to ban videos of autistic children’s meltdowns is close to garnering 100,000 signatures thanks to a sustained campaign by neurodiversity activists to frame such videos as “abuse.” But contrary to the shrill hyperbole of activists, such videos aim not to “humiliate” or “abuse” kids, but to show just how devastating severe autism can be; they are often posted out of desperation as a last resort, an anguished cry for community awareness and assistance.
Whilst our media is saturated with mawkish portrayals of mildly autistic eccentrics, the harsh realities of severe autism are practically non-existent, save perhaps for the occasional documentary made by independent film-maker or journalist (Louis Theroux’s “Extreme Love: Autism” is especially good). Activists must stop being squeamish about severe autism. To erase the videos would in a sense equate to a kind of erasure of severely autistic individuals, the vast majority of whom cannot tell their story or communicate their suffering without the assistance of a parent or family member advocating for their needs. The anti-video petition is nothing less than an attempt to render an entire segment of autism practically invisible to the wider society.
Functioning labels are valid, public awareness of severe autism is valid, and no amount of fantasy-fueled histrionics can change that. Indeed, given the ever-mounting global autism crisis, these distinctions and stories warrant even greater emphasis.
Tom Clements is a British autistic writer. He is the author of The Autistic Buddha and The Autistic Brothers.
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