Tuesday, July 8, 2014

#Autism - whose table is it? Who gets a seat?

When the autism awareness movement began, it was led by parents advocating for their children.  Parents founded most of the original advocacy organizations, and parents fought for services.  Many times they worked tirelessly on behalf of children  who were ill equipped to speak for themselves. 

Many things have changed in the past decade.  We now recognize a much broader spectrum.  Many of the kids who were the original focus of parental advocacy are now autistic adults.  Technology and emergent therapies are helping them and others at all points on the spectrum communicate effectively and broadly. 

Between growing up, being recognized in adulthood, and developing more ability to communicate effectively, members of our autism community have become far more able to speak for ourselves.  Given that reality, I believe it’s time for a shift of balance in some of the organizations and groups involved with autism.

Autistic advocates are already shifting the discussion from awareness to acceptance and support, but more is needed.  

Specifically, it’s time to recognize the primacy of autistic people in the formulation of policy relating to research, education, treatment, and services for our community and our people.   We are able to express our own wishes and opinions, and we are doing so more firmly every day.  We no longer need parents or professional to speak on our behalf as a community.  Some individuals will still want such assistance and that's fine for those individuals but – just as in other communities of adults – the majority of us can and should communicate for ourselves.

Speaking for ourselves is an essential step to independent adulthood.  It's not a dismissal of parents; it's the same thing every child does as part of growing up.  Some autistics do this at the "typical" time; others are a few years later.  Some don't become independent speakers until well into adulthood and a few never speak for themselves.

Wherever a particular person falls on the independent speaking spectrum, the previous paragraph does not imply parents and professionals don’t have valuable input to offer – they do.  Rather, it’s a recognition that a happy and free adult people must determine their own destinies whenever possible. with advice - not oversight - from others.

Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table, and parents, friends and helpers are the guests, counselors, and advisors, not the leaders.

Anyone who reads the news knows how the recognized prevalence of autism has risen steadily this past decade.  At this point, our numbers make us a significant subgroup of the population.  In America – for example - we outnumber both Jewish and Native Americans by a substantial amount.  It’s reasonable for us to expect the same recognition, rights, and acceptance as other population groups.

It’s also time to recognize that we are also more than a group of “people with a disease.”  The evidence shows we have always been here, and we always will.  That does not discount the idea that some autism stems from environmental toxins or other preventable causes.  Rather, it reflects the emergent realization that there are multiple autism(s) and one form seems to be a stable part of humanity; unrelated to disease or injury.  As much as we may seek to prevent neurological injuries and correct those that occur, we must also respect those of us who are simply “born different.”  And of course there is the issue of perspective – to me, it may be you that’s different!  We may each see that in each other and we both deserve respect and acceptance.

That means facing the fact we have our challenges, but we have our gifts too. The balance varies from person to person, and for each of us, it may change over our lifespan. Like any community all our facets should be recognized and respected.  We say autism is a way of being . . . who should young autistic people learn this from if not autistic adults?  That’s why it’s so important for us to build community and dialogue.

Most of us are aware of the breadth of our community with respect to how autism affects us, and what mix we may have of gift and disability traits.  There are differences in our expectations too, with some of us wanting to be left alone, some wanting acceptance, some wanting assistance and some calling for a cure.

The opposite ends of that spectrum are to some extent mutually exclusive on a population level but we can hopefully accept that range of difference individually.  It all comes down to this:  Whatever we believe, it’s our community, not our parents or our teachers or anyone else’s.  It’s up to the autistic adults to take charge and shape our destiny going forward.

I believe it’s our right, responsibility and indeed obligation to speak up for ourselves.  If we believe our community contains members who cannot speak for themselves we have a duty to do our best to speak fairly for them too. 

We have a broad range of wants and needs.  Who better to articulate those needs than those of us who are affected?  We express outrage when outsiders broadly characterize autistic people as “suffering from autism,” but the fact is, every human suffers from something sometime.  When we suffer, we should speak up.  But we should also speak up for our joys, our hopes, and our dreams, because speaking up is the first step in making those things real, just as it’s a first step in making suffering go away.

By saying this I am not presuming to speak for any specific individual, nor am I suggesting autistic adults should bull their way in to try and speak for individuals who are unable to speak for themselves.  Any community will contain members whose guardians speak on their behalf, but they are in the minority.  In the autism community, that shift will represent a reversal.

Autism – by definition - presents us with communication challenges but most of us can and do communicate by the time we reach adulthood.  It’s time for us to use that great human gift, for all our sakes.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming 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 Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.