My Life With Asperger's

How to live a high-functioning life with Asperger's.

What is Neurodiversity?

Neurodiversity means many things to people. Here's my first person definition

To me, neurodiversity is the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome.  This represents new and fundamentally different way of looking at conditions that were traditionally pathologized; it’s a viewpoint that is not universally accepted though it is increasingly supported by science.  That science suggests conditions like autism have a stable prevalence in human society as far back as we can measure.  We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not the result of disease or injury.  

At the same time, we are identifying diseases and injuries (physical and environmental) that will produce brain injuries whose effects look very similar to autism and other differences.  Acceptance of neurodiversity certainly does not include passive acceptance of such injury and insult, though we should unconditionally accept individuals who are so impacted.

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Smallpox is a disease that attacks healthy people; one can seek its eradication by understanding its foundations and planning an attack at that level.  Autism – as a lifelong part of otherwise healthy person – may be understood at that basic level but if it’s an innate part of the person it’s not subject to attack and cure in the same simplistic manner.  That’s why the remediation of its medical complications is such an incredibly complex challenge.

Indeed, many individuals who embrace the concept of neurodiversity believe that people with differences do not need to be cured; they need help and accommodation instead.  They look at the pool of diverse humanity and see – in the middle – the range of different thinking that’s made humanity’s progress in science and the creative arts possible.  At the edges they see people who are functionally crippled by being “too diverse.”  When 99 neurologically identical people fail to solve a problem it’s often the 1% fellow who’s different who holds the key.  Yet that person may be disabled or disadvantaged most or all of the time.  To neurodiversity proponents, people are disabled because they are at the edges of the bell curve; not because they are sick or broken.

As an adult with autism, I find the idea of natural variation to be more appealing than the alternative – the suggestion than I am innately bad, or broken and in need of repair.  I didn’t learn about my own autism until I reached middle age.  All those (pre diagnosis) years I assumed my struggles stemmed from inherent deficiencies.  Asserting that I am different – not defective – is a much healthier position to take.  Realizing the idea is supported by science is even better.

To many neurodiversity proponents, talk of “cure” feels like an attack on their very being.  They detest those words for the same reason other groups detest talk of “curing gayness” or “passing for white,” and they perceive the accommodation of neurological differences as a similarly charged civil rights issue.  If their diversity is part of their makeup they believe it’s their right to be accepted and supported “as-is.”  They should not be made into something else – especially against their will - to fit some imagined societal ideal.  

 The difference – and this is a big sticking point for neurodiversity opponents – is that racial or sexual orientation differences do not functionally disable a person whereas neurological differences can.  That reality makes this situation much more complicated.

It’s also worth noting that neurodiverse people generally look just like anyone else.  Therefore, when we act in unusual or unexpected ways we may elicit unwanted negative responses from an unaware public.  For that reason it’s important for all of us who are different to learn the basics of getting along in neurotypical society.  Some see this as unacceptable compromise but I see it as recognition of an unchanging (or very slow to change) reality.

There is no question that neurodiverse people have brought many great things to human society.  If those achievements were indeed facilitated by neurology it logically follows that an attempt to “cure” future disability by eliminating our differences would be tremendously harmful to humanity. 

There’s also no question that groups homes and other institutions are filled with people whose gifts remain hidden, and whose differences prevent them from living on their own.  Some of those people have differences that make them act self destructively, or act aggressively toward others.  The roots of their problems remain poorly understood but we cannot deny their existence alongside those who are gifted by another version of what may be called “the same difference.”

Those folks deserve more than understanding.  They deserve meaningful help.  I don’t think that’s inconsistent with the ideals of neurodiversity. 

Neurodiversity opponents look at those who are disabled by difference and say it’s wrong to attribute that to “normal variation.”  They demand a cure.  Unfortunately, as the evidence for neurodiversity accumulates, it seems increasingly likely that an overall cure for neurological difference is not possible, and if the diversity is at the root of certain people’s achievements, it’s not desirable either.

So what’s a progressive society to do? How do we help?

I believe we can relieve the burden of neurological disability without altering the essence of the person.  Early intervention for speech and behavior is a prime example of this today.  In some situations, society can change to make homes, parks and workplaces more accommodating.  At the same time we can develop therapies to help us live our best possible lives.  Finally we can change attitudes toward people who are different so that they are respected, valued, and made to feel part of the community of man.

If we accept that a neurodiverse world is a good world we will have made much forward progress in our thinking.  If only it were that easy!

 However you feel about neurodiversity as a concept, neurological disability is very real.  There is no question in my mind that society has a duty to relieve the suffering that disability causes, and help disabled people to live their best lives.  I like to think most people agree with that general ideal.  The real question is how best to get there.

We have made very little progress developing treatments or therapies to remediate the worst effects of neurological difference.  We still don’t know much about how different neurology impacts the rest of our body systems, or our overall quality of life as we age.  That – to me – is a great tragedy for our generation.  By thinking of conditions like autism as “diseases that need to be cured” we have followed a research path that has led to greater understanding of certain details but precious little that actually helps the broader autistic population.

I think it’s time for a change of direction.  Instead of spending most of our budget on basic genetic and biological research let’s shift the priority toward applied research to help the people living with neurological difference today.  Those people have a tremendous range of concerns and problems to address so the scope of needed work is broad.

At the same time let’s put more effort into environmental research – studies that will help us understand how we may be poisoning people and creating damage that mimics (but worsens) natural variation. 

 If neurological differences are indeed naturally occurring, research into foundation level cures for those differences will not be terribly productive.  Having said that, we should acknowledge some real breakthroughs in identifying genetic variations that lead to major disability with no known corresponding benefit. 

The identification of those mutations and exploration of causes is a major scientific achievement.  We have not yet translated that work into beneficial therapies but I see the promise it holds.  I certainly believe research like that should be continued though I also believe our priorities must shift.

Previous campaigns to accept diversity in race or orientation were simpler in comparison to the upcoming struggle for neurological equality.  In them, all we had to change were beliefs and attitudes.  With neurodiversity we must change beliefs at the same time we find ways to solve significant functioning problems.

After many years of struggle it’s against the law to discriminate against someone because of race or faith anywhere in America.  Unfortunately we have not come that far in other areas.  It’s still legal to fire someone for being gay in many states.  People who act different by virtue of their neurology have no protections other than those general ones afforded under the Americans With Disabilities Act.

The task of changing societal attitudes is complicated by the fact that neurological difference is invisible.  It’s hard for the general public to embrace an unseen thing that produces unexpected behavior with no obvious explanation beyond “acting bad.”  Some people think neurodiversity acceptance means accepting what are otherwise socially unacceptable behaviors in the name of embracing difference.  I don’t agree with that idea at all.  All of us need to act right (ethically, morally, humanely) toward one another.

I think much opposition to neurodiversity stems from the (misguided) notion that acceptance of neurodiversity implies opposition to basic scientific research, or opposition to developing tools to make the lives of disabled people better.   I don’t think either thing is meant or implied.

 We can accept that neurological difference is a natural part of us while still working hard to minimize or eliminate its negative effects.  At the same time we should recognize and celebrate the very real benefits difference confers on many of us, and embrace people as they are because that is reality.  As with any disabling difference, a parent may wish things were otherwise, but they’re not and unconditional acceptance of our loved ones is the healthiest way forward.

I believe acceptance of neurodiversity backed up by support for solid research into how we can be our best (least disabled, most productive, etc) is the most positive position those of us who are different can take.  I celebrate all the people who fight for the rights of people who are different, and I look forward to the further fruits of those efforts.  Meanwhile, I will use my own differences as I always have – to make a living doing those odd things I do better by virtue of my neurology.

 

John Elder Robison is an adult on the autism spectrum, and parent of an adult son with autism. He's currently Scholar In Residence at the College of William & Mary in Williamsburg, VA.  He's a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, and he serves on many other neuroscience related boards.  The words expressed here are his own.  He's the author of three books - Raising Cubby, Be Different, and Look Me in the Eye and numerous articles.  Find him online at www.johnrobison.com  

John Elder Robison is the author of Look Me In The Eye: My Life With Asperger's, and Be Different, Adventures of a free-range Aspergian.

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