Why are we autistic?

Why are we autistic?

Looking toward the Salton Sea, Joshua Tree CA  (c) J E Robison

That is a charged question for many in the community.  I am one who feels I’m autistic because it’s how I was born.  The traits that caused me to be diagnosed were evident in my son, his late mom, and my late father.  We were all “of a kind.”  Now that I know about autistic traits I can see them in older relatives, most of whom have now passed away.  I feel that the autism in me is a stable inherited thing that also appears in some (but not all) of my relatives.

I am the first generation of my family to have an official autism diagnosis.  Others were just "different."  Uncle Mercer was a little strange, never worked, and lived at home till he died.  My grandmother took cousin Bob to the child guidance clinic at Emory University every weekday, but he never did learn to act right.  They've all died now, and can only be evaluated in retrospect.  I look back at memories and family stories and see a thread of autism reaching as far back as my family has stories.  Autism isn’t something that happened one day.  It was always here.  It’s awareness that’s new.

In my family autism is just one of several neuropsychiatric differences.  Other relatives and ancestors were diagnosed as “deaf and dumb,” which I suspect was an earlier term for what we now call non-speaking autistics.  When I was growing up my grandparents warned me about “idiot cousins,” who did not talk. I suspect they were autistic too.  Other relatives were called manic or schizophrenic.  A few, like cousin Earnest Junior, spent their lives in institutions and we didn’t talk about them.

The suggestion that “autism affects one in 60 people” obviously is not true in my family.  I have no idea how many other neurological conditions are present among my cousins, but I suspect the answer is a lot.

Some family members grew up to be like me – reasonably successful independent adults.  Others never grew up, spending lives in their parent’s homes and dying young.  Like all families we have a mix of outcomes among us.  Autism surely has something to do with that, but it’s not the only determining factor.

It should not surprise you that I’d be offended by the idea that we are products of injury or disease, as people sometimes allege.  Yet my own family members said those things when I was growing up.  “His mommy had the German measles when she was pregnant, and it made him an idiot,” was how one cousin was explained.

When I grew up I had no idea our family was in any way unusual.  The way they were was my “normal.” It was only 40 years later after I was diagnosed with autism myself, that I looked back and thought things like, “my cousin Malcom wasn’t an idiot.  He was autistic.”

But it took a long time for me to start making those connections.  It also took reaching out to distant cousins, where I found younger descendants diagnosed with autism and that led to conversations about older shared ancestors and remembered autistic traits.

In that way a picture slowly emerged: a family tree with autism wrapped around it, like a vine that climbs some branches but not others.

  

The thing is, if you had asked me about autism in my family during the first 40 years of my life, I would have said you were nuts.  In the next decade I was evaluated informally and I was told I am autistic.  Informal evaluations by local clinicians are all most people ever get, when it comes to psychiatry.

I didn’t stop there.  A few years later I found myself at one of the teaching hospitals of Harvard Medical School where one doctor evaluated me with the ADOS and another interviewed my mother with the ADI-R.  In that huge imposing hospital, I felt quite a bit of worry about what they would find.  Maybe I’m not autistic at all, I feared, maybe there is something wrong with me and it’s really bad.  But that was not to be.  The tests just confirmed what I’d already been told.

My diagnosis had been a mixed thing.  On the one hand I was relieved to have a nonjudgmental explanation for why I seemed different from most of the people around me, and why I could not do many things that seemed to come easy to others.  Later the understanding of autism helped me see how and why I could do things others could not.  At the same time, I was sad to realize I would always be different from other people, and a part of me would always feel alone.

My feelings about autism have evolved quite a lot as I’ve gotten older, settled in with the knowledge, and learned more about it.  A little more than ten years ago I was invited to offer an autistic person’s perspective on research to benefit our community – a thing I still do today.  To do that job (as a volunteer) I had to invest quite a bit of time learning about the science.

One of the things researchers have studied for decades is what makes us autistic.  Today the evidence suggests that about 2/3 of autism has an inherited component, with some environmental influence.  We can see evidence for that in families like mine, where a father may have traits of autism but only one of his three kids is autistic.  Why that one, and not the others?  While we have some answers, we are far from a complete understanding.

When you ask why those of us in that group are autistic, one likely answer is that we “just are.”  We were born this way as the current end of a long genetic thread reaching into the distant past.

But that understanding is only now emerging.  I remember my own family had their own vernacular explanations for my more obviously impaired cousins – maternal disease, dropped on her head, and such.  The thread of autism in my family has the whole range of affect – gifted, really impaired, and not autistic at all.  Collectively, we certainly don’t have “the mild kind” and I don’t know if such a strain even exists.

In families like mine multi-generational genetic studies are finding inherited markers passed on from one generation to another.  In some families, markers are only passed on to some children. In others the markers may be in all of us, but only some of us are autistic.  It’s a complex puzzle.

Science has also identified another group of autistic people, born into families where the known genetic markers appear spontaneously and at the same time there is no known history of autism elsewhere in the family.  Within that group some are born with markers that are strongly associated with both autism and significant intellectual disability.  Many have de novo genetic changes, and their autism is called idiopathic – of no known cause.

The people in that group tend to be more disabled.  When people talk about separating autism into multiple threads with biomarker tests, that is one possible dividing line.  People with extremely severe cognitive disability and autism tend to have shorter life spans and many more medical complications.  They are a group whose problems are obvious and whose needs are very poorly met.

Few in that group appear like me – a fairly independent, articulate adult.  Severe intellectual disability tends to render people invisible in this society so in many cases parents and caregivers speak for them.  Emerging technology is helping some of this population speak on their own, but communication with the wider world remains hard.

When a child doesn’t speak and has cognitive disabilities parents have always asked why.  I saw that in my own family.  In my childhood the answers were thought to be disease, injury, and God. Today when parents ask, they look online, where they find everything from years past plus a mix of conspiracy, pseudo-science, and real science.  Often you can’t tell them apart.

The truth is, we are identifying possible risk factors for autism all the time but in many or most cases, we will never know.  That is how it is for a lot of disease.  People are diagnosed and ask, why me?  All the doctor can say is, no one knows.

I see a divide emerging in the autism community between autistic people who feel their family’s autism was inherited, and the parents of kids whose autism is both severe and idiopathic.  The first group says, “being born causes autism,” and they are offended at the suggestion that autistic people are poisoned by lead, mercury, or something else.  They see the effort to find a cause as an attempt to deny their natural place in the human tribe.  The science suggests 2/3 of autistics are in this group.

This first group also contains a good number of parents who accept their kids as they are, and who share the belief that they were born autistic as a naturally-occurring part of the human tribe.  They don’t seek explanations for why we are but focus on quality of life as we are.

The second group is mostly not actual autistic people.  It’s parents.  Some are armed with research that shows how lead or mercury poisoning can cause neurological damage that produces autistic behavioral symptoms.  They may lose sight of the fact that chemical poisoning is real, but not the source of most autism.  Parents in this group reject the idea that autism is in any way a part of “normal human variation.”  They tend to be offended by the views of the first group, saying there is nothing normal or good about the autism they know.

If there are no autistic people in their family tree the behaviors may be new and scary, and if there is no family precedent they may be very hard to accept.  In my case, my son's autism was no big deal; it was "just like me."  In a family with no autistic history the same behavior could have felt alarming and scary, and the scared parent might well have a negative effect on the child.

We are all in this tribe together.  I have cousins my mother never took me to see, because she was terrified of them and they spent most of their lived locked up.  I have other cousins who never spoke but were still my friends.  And I have cousins who were not autistic at all.  I believe we are all here naturally, part of the range of human variation. 

But I understand how the parent of a kid who was much more impaired and possibly dangerous might not hold such a tolerant view.  I just hope they can see how a less tolerant view can be hurtful to us autistic people - within the family and without.

The thing is, we are what we are. We are autistic now and we will be tomorrow.  Telling us we are products of pharma conspiracy, mom’s disease, or any other thing can only be harmful to us.  We have enough challenges already.

Work toward relieving our disabilities. Some answers may lie in medicine.  Some are found in technology.  Others are social – like safe adult housing situations.  While all that happens, accept and support us as we are.  That is the best thing, no matter what else you feel.

(c) 2018 John Elder Robison

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 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 and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.