Our community's success with self advocacy raises new issues for all
April is Autism Month, which means many things to the ten-plus million people who make up our community in America. For some, it’s Autism Awareness. For others, it’s Autism Acceptance. And there are those who wish for Autism Cure. We have yet to agree on what we want, or what to stand for, and that holds us back in terms of advocacy. We also don’t agree when it comes to who’s part of our community.
Some people see the autism community as exclusively autistic people, while others see the community as consisting of autistic people, family members, close friends, and caregivers. Personally, I embrace that wider membership, but I understand the thinking of those who wish for a narrower definition.
The question of what to seek as a goal is tougher. Many autistic people feel that we’ve moved beyond awareness and it’s time for acceptance. I wish that were universally true, but I still see very widespread ignorance of what autism really is, once outside my circle of acquaintances. The broad public does not know much more about autism than they do about epilepsy or multiple sclerosis, just to name two examples. As much as I wish otherwise, we still have a public education job ahead of us, to achieve broad and meaningful autism awareness.
Autism acceptance has been the goal of self advocates for almost twenty years. Jim Sinclair asked for acceptance "as we are" back in 1993, but we still have a long way to go to achieve that. Mr. Sinclair may have found acceptance for himself, but that’s not true for many of us even now. Every year a new crop of parents wrestles with acceptance of their newly diagnosed children, and the misalignment between the child of their fantasy or dream, and what appears a hard reality. Some get there quickly; others never do.
Many autistics believe that autism is an inborn neurological difference, and as such, is not subject to cure. To those of us who hold that view, the healthiest path is to accept the way we are and make the best life we can. Other autistics reject that idea and hold on to the hope for a cure.
I believe we can hold both views. In many conversations, I have heard how one person’s definition of “cure” seems identical to my definition of “relief of suffering or disability.” In my opinion, we should all support relief of suffering. No one should live at risk of epileptic seizures, or suffer from debilitating anxiety or intestinal pain. We should all support the development of technologies that help nonspeaking autistics communicate with the wider world. We should also support the development of therapies to help autistic people organize their lives, make friends, and engage society.
In recent years the subject of neurodiversity has risen to the fore. In simple terms, proponents of the neurodiversity concept posit that autism has been part of the human genome forever, and therefore it must serve an evolutionary purpose. While I agree with that view I am also quick to point out that does not mean autism is not terribly disabling for many of us.
Members of the autism community with intellectual disabilities plus communication and medical complications may seem “more disabled” than autistics like me. Indeed, they may require substantial lifelong support where others of us live reasonably independently. Unfortunately, that is not the only measure of autism’s impact upon us. Individuals at all points on the autism spectrum are at significantly increased risk of mortality from many causes. The rate of suicide in our population is nine times that of the general population. Rates of epilepsy, depression, and anxiety are similarly troubling.
Autism support should not be based on “whose disability is worse.” The fact is, all autistic people have some degree of disability – otherwise we would not have been diagnosed with autism. We are all equally deserving of respect, dignity, and the supports and treatments we need to live our best possible lives. Most of us are far from that goal today.
With respect to autism awareness, one thing that troubles me is what I see as the growing dismissal of our very real and varied disabilities thanks to our success promoting our exceptionalities. Many of us have written and spoken about how autism makes us think differently, and how that different thinking has facilitated the success of some of us. Most of the people I know who speak of exceptionality also stress disability – I know I do. However, I see a growing perception that autism is all Sheldon from Big Bang, and other popular culture caricatures. That could not be farther from the truth for a majority of our population.
At the same time, our righteous struggle for acceptance makes some employers and government rule makers think autism is “just” a social and civil rights issue. Those things are important but autism has a medical side too, and I’m concerned that is getting overlooked in some circles.
Meanwhile, our public health agencies continue to invest the majority of our autism research dollars in basic biology and genetics, despite the fact that we have pressing needs for support that are not addressed by those lines of investigation. I’ve often made the case that we need more therapies to help us function and fit in, and we need effective treatments for the many medical issues that come with autism. We also need to recognize how little we have achieved with respect to addressing the core symptoms of autism in its most debilitating forms, and put more effort into studies that lead to better quality of life for those people today and tomorrow, as opposed to a generation from now.
What’s the fix for these things? The simple answer is, ask autistic people and listen to the answers. How I wish it were that easy! When we answer in ten different voices with what seem like mutually exclusive demands we make it easier for those who might help to do nothing or to do the wrong thing.
United we will succeed. Divided we continue to falter.
Autistic people and families – I hope this month and every month you can join me in recognizing our true shared goal – the best quality of life for all autistic people and their families, in all our wonder, variety, and disability.
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the NY Times bestselling author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick.