Please note that this post is an attempt to bring together a range of ideas and concerns I’ve been grappling with for a while, rather than a definitive version of my view on all these issues. It is “unpolished”, but I still want to share it in the hope that others’ insights will help me clarify and refine what I’m trying to get across.
I do not have to justify the existence of my son. I do not accept the notion that a worth of a person is tied into what they can do for someone else. My son has basic rights by virtue of his being a human in a humane society; not by virtue of what he can do for someone (or everyone) else around him.
Yet I very frequently read the view – even from disability rights advocates – that the value of my son, as an autistic child, is tied to the hidden potential he has to enhance everyone’s else’s life: That his hidden savant talent or hidden high IQ will allow him to solve world hunger or write the ultimate computer program; that he should be allowed into a mainstream school because it will enrich the lives of the other children.
So I’m not surprised when I read stories about autistic children being used as a stepping-stone to another child’s fame, or about businesses gloating about using cheap autistic labour and expecting everyone to pat them on the back. It’s how they’ve been taught to value autistic people, in part by autistic people who are arguing for equal rights but who have accepted the rhetoric that human value comes from what we can do for others.
I want to be clear that I do think that messages about hidden talents and great potential can be important, where it helps the public to understand that autism can get in the way of appreciating and accessing a person’s “wholeness”; their own voice, their skills, their potential. That providing adequate support and services can help an autistic person towards independence, to form loving relationships, and achieve employment. But that message – about the nature and challenges of autism – is far too often linked to the idea that the value of autistic person lies in those unseen and unknown abilities.
Not only should we not see a human’s basic value in this way, it is also dangerously distorting for autistic individuals; supporting the idea that autistic people who don’t have high IQs or hidden savant talents, are either thereby not truly autistic, or are of lesser human value. It ironically encourages parents to not accept and love the child they have, but the child they might one day have; ironic because acceptance is so much of the message of the disability rights movements. The fact is some autistic children will always remain non-verbal, or of excessively low functioning levels (etc). Telling parents that their child has fallen short not just of the normal human ideal, but also the mystical autism ideal (the high IQ or savant for instance), is a sort of un-necessary cruelty that I think few really understand unless they have lived their daily lives with the care of such children.
There are no prognosis promises, no magic cures, with autism. Nor are there any promises of a bright and happy future for any other child (disabled or otherwise). We don’t just love children because of what they might be someday, we love them because of who they are right here, right now. If we encourage people to only value our autistic children for what they might become, we are just encouraging them to see those who can’t and don’t reach that supposed potential, as failures. To see their parents as failures too. The fact is the vast majority of autistic people are going to be painted then as failures in a society that primarily values them for their “hidden” astounding talents that will better the world for everyone else.
So much media attention is given to this idealised autistic person – so much focus on the unusual and high-end talents, or the “miracle recoveries” – that the more simple yet wonderous achievements of autistic people are ignored. The autistic people who learn to drive, get employment at all, have relationships and have children; these wonderful things that enhance their own lives – instead of focusing on autism as a side-show to benefit the rest in society – get side-lined. Those who overcome the enormous challenges autism presents to them in order to get some level of independence, to live their own idea of “the good life” without reference to everyone else’s versions, need to be seen and heard more. Their stories might not make for flashy headlines, but they make you cry with joy and take pleasure in achievement in the face of serious adversity. They make us celebrate achievement in reference to the individual themself, not in reference to “everyone else.”
It makes sense in a democracy supported by taxes to take an interest in whether someone can contribute to the pool of resources we all draw on in times of extreme need. But that interest is that people have genuine need when they draw on the resources, and that those who can contribute do (rather than, say, those who actively choose to draw down resources without intent of ever adding to them). Autism is relevant here in regards to genuine need; through no fault of their own many autistic people need higher levels of support. As a caring society, we provide accordingly. And we know that we may find our lives or our children’s in the same needy situation some day, so most of us accept this arrangement as necessary and moral.
But these concerns do not mean it is a kindness to say all autistic people can one day contribute more than they will need; it’s unlikely to be true and it creates false expectations from society about what autistic people can and will do. In turn, creating cynicism from a public asked to support autistic adults who haven’t “reached” that magical potential the public was promised (I’m increasingly encountering forum discussions attacking autistic adults for not getting jobs, calling them lazy and not “truly” disabled).
It is true that higher levels of support and services from a younger age can help very many autistic people reach higher levels of skill and functioning in life (relative to themselves otherwise), in turn lowering the required costs to help them live their lives as adults. But this needs to be a separate argument from some overall picture of what all autistic people can achieve with adequate support. The focus must remain on how it can help that individual towards a better life and independence, without ultimate referral to super-talents (or otherwise) of the few.
If we don’t like human lives been ground-down into “money-in, money-out”, the response should not be “but really these people can be amazing in-puts to society, just look at this amazing example…”. Rather, the response should be a reaffirmation of humanity and of a society that supports those who need it when they need it. Otherwise you’re just buying into a view that will always ultimately view the disabled as lesser human beings, in general and within society.
If my son has the same rights as everyone else, it is not because of some idealised version of what he might one day be or what he can do for others, it is because of who he is right now. He is a human being. Promising or pretending he will be something “more” than what he is now, just buys into the rhetoric of those who would treat my son as a less worthy human being by virtue of his disability. If he becomes an amazing savant, has a tremendous hidden IQ, or will one day enrich everyone else’s life as much as he has mine, then so be it. But if he doesn’t – if he can’t – it does not detract from his being human, and deserving to be treated with humanity.