Being Autistic at the Bottom of the World

Thoughts on Autism and Neurodiversity from Australia

Posted Sep 10, 2016

I’m writing this column from the bottom of the world – Brisbane, Australia. The occasion for my visit was the Australian release of my newest book, Switched On.  But my message for autistic people and the wider world is bigger than just one book.  For those who did not get to see me this trip, I’ve summarize my thoughts below.

In several talks and interviews, Australian medical professionals made comments about normal brains, and brains of people with autism.  All those words were surely meant to be kindly, but I don’t hear them that way anymore, and I spoke up in correction.

There is no such thing as a “normal brain.” There is a broad continuum of human functioning on many levels.  One man’s normal is another man’s crazy.  Furthermore, no matter where we fall on the continuum, each of our ways of being is “normal” for us as individuals, in that it’s the only life we know.

Recognition of this is part and parcel of the emerging concept of neurodiversity - neurological diversity as a natural thing in all its variation.

I cannot know how you see the world, and you cannot know how I feel about it.  The best we can do is have a dialogue which can only proceed constructively on the basis of mutual respect and presumed equality.  There is no equality in comparing “normal or autistic.”  Doing so makes autistic less, whether the speaker means to or not. 

Perhaps medical people do that because they are used to comparing “sick versus healthy.”  It’s not the same.  Sick people generally become healthy again.  Being autistic is not a state of unhealthiness that can be cured, nor is it an abnormality. It’s a difference.

That brings me to the second and more important point.  We autistics are not failed or broken versions of normal.  We are complete and correct in our own right, whether you can see that or not.  We are entitled to the same human rights, dignity, and respect as you or anyone else.

This does not deny our disability, nor is it a comment on our exceptionality.  We may be extremely disabled, or barely disabled at all.  Often our disability is a function of context; some of us can hide most of it except in times of stress. Most autistic people have a mix of traits.  If we are wise, we build on our strengths and minimize our weaknesses.  Conforming to your concept of “normal” is not part of the plan.

The world needs diversity, and the broader world of humanity needs us.  At the same time, we need them. 

That said, some of us may recognize that we are challenged in social interactions with strangers and casual acquaintances or co-workers. We may seek out therapies that help us in that regard.  Doing so is a quest to make ourselves the best we can be.  It’s not a search for a cure.

Autistic people span the range of human intelligence.  Some of the smartest dons in our universities are said to be autistic, as are some of our most innovative business leaders.  Other autistics struggle mightily with the most basic cognitive tasks and struggle with the basics of daily life.  We are a very diverse group with many needs.

Many people asked what the future holds for autistics.  I believe our future is bright for we are coalescing as a tribe and asserting our rights.  All over Australia I saw emerging autistic community leaders.  We must stand tall, and speak strongly, and let those in government and community know who we are, and where we stand on issues that affect us.

You would not turn to the Bishop of Brisbane to address a question about the Jewish community in that city.  Why then do medical doctors presume to speak for us? Most of us can communicate perfectly well if given the opportunity, and its time we did so all over the world.

Let’s unite in a call for research and deployment of services and therapies that actually benefit the people who live with autism today.  In that regard, let us recognize that there are two groups who need help – us autistics and our families.  We autistics need therapies and treatments, and our families need respite.  Both of us need support.

Studies show that autistic suffer from many things.  Most of us have depression and anxiety to some degree. Half of us have sleep disorders.  A third of us have epilepsy and seizures.  About the same number have intestinal distress.  Our adult suicide rate is nine times that of the general population. Those are real and pressing problems that cry out to be addressed, and basic genetic research (where the lion’s share of funds has gone to date) will not touch those problems.

Despite those real complications, autism itself is not a disease.  It’s a way of being.  As such, it’s not subject to cure but is a thing to be accepted, supported and even – as individuals – cherished.  We may not like certain aspects of how we are (autistic or not) but they are and will remain our reality for the foreseeable future.

Switched On does talk about the emerging science of brain stimulation, which may change some formerly unchangeable brain parameters for the next generation.  For now, it’s time to become informed, take charge, and lead the discussion about how such new tools will impact us as individuals and as a group.

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 the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  

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.

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