Knowledge Is Power, in Community and Alone Why concepts of neurodiversity, autism acceptance, and community are important.

A repost from Psychology Today: https://www.psychologytoday.com/blog/my-life-aspergers/201509/knowledge-is-power-in-community-and-alone

I figured this out firsthand while spending time with Dr. Warrenetta Mann, one of my colleagues at The College of William & Mary.  Warrenetta is the director of our university’s counseling center, and we’ve gotten to know each other through our shared commitment to make our campus friendlier for neurodiverse students.

That’s a subject that’s particularly important to me, as an autistic adult.  College credentials are increasingly essential for good-paying employment, but college as it’s structured today is a tough place for students with autism and other neurodiverse conditions.

Warrenetta and I are of the same generation, which means we both grew up in the sixties in the segregated south.  But that’s where the similarity ends.  For I’m a large white male, and she is a petite black female.  Given that disparity, you might expect I’d have been the one with all the confidence, power, and advantage — standing tall.  You’d be wrong.

Warrenetta is educated and articulate.  She presents herself as poised, confident, proud — all the things I could never feel myself.  Where she earned a doctorate from a top college, I flunked out of high school in the tenth grade.  She became a star in the rarefied airs of academia; I became an outlaw engineer for rock and roll bands. She could talk to anyone, but I could not even have a conversation with someone like her when I was 18 years old.

Those are some pretty striking differences.  Yet many would dismiss them, saying they are just because I’m autistic and she’s not — as if that were a full and complete explanation.  It’s not.  If there is a simple answer, it would be that Warrenetta had a positive self-imageand the confidence to step forward, and I didn’t.  That wasn’t a result of autism; it was a result of community support.  In Warrenetta’s childhood, family and community stood behind her.  In my life, there was no support from either.

Consider our childhoods, and how our respective communities treated us.  As a black person in the south, Warrenetta was a target for racism wherever she went.  There were colored water fountains and bathrooms throughout my childhood, with a few that remained into hers.  Even with the passage of federal civil rights legislation, some clerks smiled as they declined to serve people of color.  I saw those things in passing, but I was white, and they were not directed at me.  I was puzzled, but wasn’t hurt by them.  Her situation was very different.

A few years ago, if you had asked me, I’d have said I wasn’t much affected bydiscrimination.  Now I know that’s not so. I may not have been targeted for my skin color, but I was singled out just the same — for my behavior.  Kids looked at her and called her a n_____.  They called me a retard.

It’s funny, how those words hit me at the time. When I heard racist talk about black people, I thought to myself that the speakers were building themselves up by knocking the black people down.  Yet I heard the things people said about me, and I assumed they must be true.  Why did I reject one set of hateful words and believe the other?  I think it’s because my logical brain saw no connection between skin color and intelligence.  But when people said I was stupid because I acted stupid, that made sense.  I could not argue or dismiss that from my mind.

It took 50-some-odd years for understanding to dawn in me, but now I realize that both of us grew up with exclusion, and that’s painful whatever the reason.  But that’s where our similar experiences diverged.  For Warrenetta’s differences were visible, and therefore defensible.  Mine were not.

Warrenetta and her parents — and others in the African-American community — easily made the same leap of reasoning I made as a child.  Different skin color does not connote intellectual inferiority any more than different hair or eye color does.  In the sixties black parents could explain that, and show their kids role models everywhere.  There were heroes on a national level.  There were leaders in the local churches.  There were trailblazers in small business.  And there were historical figures to admire. Plus, of course, family members to look up to.

With no knowledge of autism, there were no neurodiverse heroes anywhere in my childhood.  With nothing to observe but my inexplicable and bizarre behavior, what might my parents have said?  “Sure, son, you come from a long line of head bangers and poo-smearers.  We got tossed out of school too!”  There were no words to support a kid like me.  And I knew from an early age that my parents were not losers like me — they were both college graduates.

Now we have widespread autism awareness, but neurodiverse kids still experience this same thing today. I was tormented for being invisibly different. At best, most other people didn’t want me around.  At worst, they thought I belonged in a cage.  Some of them even did their best to put me there.  I may have been a white male but the drawbacks of my strange behavior cancelled out any advantage my race and sex might have conferred.  I cringe when I hear of that happening in today’s enlightened and progressive schools.

No one had a helpful answer for the names I was called, because no one knew why I was called those things in the first place.  My mother said the words weren’t true, but in the absence of any explanation, that only convinced me of the opposite.  That left me to grow up alone, believing I was inferior. What else could I conclude?  I’d internalized what people said to me, even as Warrenetta rejected the vicious things that were said to her.

It took meeting her in middle age to open my eyes to that reality, and to make me think about what we can do for a better tomorrow.  I realized we autistics could learn a lot from the men and women who’ve fought for racial equality these past 50 years.

Collectively, those people helped build and sustain a community, and that led to self-confidence and pride — vital things I lacked.  Warrenetta’s parents knew why she was being attacked, and they knew how to defend her.  That — more than race — is the thing that set us apart.  It’s a perfect example of that old adage; knowledge is power.  In her case, knowledge made it possible to build a defense against hatred, and the self-confidence that engendered carried her into adulthood.  Lack of the same thing crippled me, and it still hurts thousands of other autistic people.

But we can change that, and I want to start that process right now.  To do that, we need more autistic adults to step forward, and own their [our] autism.  They [we] can speak about autistic life from a first-person perspective, both good and bad. Sure, autism has disabled us in some ways.  But many of us are gifted too.  The tragedy is how unappreciated those gifts are in today’s world.  It’s high time that changed, and there are a few things that will help make that happen . . .

For one thing, more parents need to own the autism in their kids.  So many today deny that obvious truth. My own parents could not own it, because they did not know what autism was.  Yet I remember my dad — he died 10 years ago — and many of my cousins and ancestors, and I see strong signs of the spectrum in lots of them.  But none of us knew it for what it was.  That left us in a tragic situation — their ignorance and shame led them to use the same corrosive language that I encountered on the street.  My family actually chased me away from my autistic relatives  “Stay away from your cousin, son.  He’s not right in the head and he can turn on you like a rabid dog.  He’s just a idiot.”  The adults seemed to do everything they could to distance themselves — and me — from our “defective” cousins. “All families have them,” my grandmother said, “But we don’t talk about them.”

There are some families where autism appears spontaneously — seemingly out of nowhere.  Geneticists call those de novo cases.  Some parents believe those are the majority of autism cases, but the evidence shows that most autism runs in families, and an autistic child is far more likely to have autistic or otherwise neurodiverse parents, siblings, or relatives than the current 1-in-68 autism statistics would suggest.  Indeed, some of the earliest descriptions of autism — from the Vienna clinic where Hans Asperger got his start in the 1930s — describe how they often saw traits of autism in parents and grandparents.

Another way to understand this is to realize autism was a “communal difference” in those families, not a child’s individual disease.  As such, it presented differently in each family member (invisibly in some) and conferred both gift and challenge.  Indeed, the Vienna clinicians remarked on the creativity, technical prowess, and — at the same time — eccentricity and even aloofness of parents whose children were in their clinic.  In recent decades we’ve made a major mistake by treating autistic people as if we stood alone, when in fact we seldom did [do.]

Today I’m sure my father had Asperger’s, but like me he did his very best to hide any differences and blend in to survive.  It was all either of us knew how to do, and we never spoke of it, even after my own diagnosis in the late 1990s.  Now I realize that my dad grew up with the same poor self-image as me, despite being a star in school and graduating from an Ivy League college.  Those things couldn’t change the isolation both of us felt.

Only community can do that, and community is something we autistic people must build one person at a time.  It’s going to take courage.  We’ve got to let go of the victim mindset, and stop talking about autism as “something bad someone done to us or our kids.”  Those of us on the spectrum must accept who and what we are, and recognize that the majority of us are this way naturally.  Most of us are not the product of chemical poisoning or Big Pharma Conspiracy.  If we’re successful, we owe it to younger autistics to show them how our differences facilitated good outcomes.  At the same time, we must be realistic in describing our very real challenges and what we did about them.

We should continue the fight for therapies and treatments to relieve the many ways we suffer and experience disability, but at the same time we must accept that autistic people are here to stay and society should embrace that.  Autistic impairment is very real in some of us, and we have a duty to help those people live their best possible lives.  At the same time we must honor those autistics, who only wish for acceptance, or even to be left alone.

The more autistic adults step forward, the more role models young people on the spectrum will have.  The more adults speak out, the easier it will be for others of all ages to own their autism and the autism of their kids.  When that happens being autistic will become something that just “is” — a mix of gift and disability; neither good nor bad — and not a badge of shame.

I dream of a day when young people on the spectrum can look at autistic adults and see role models and heroes.  When that happens they will know the hateful words they heard as kids were lies, and they will stand tall and proud.

John Elder Robison

All words and images (c) 2015 John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He’s the neurodiversity scholar in residence at The College of William & Mary, and author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He’s served 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) in Springfield, MA. 

The opinions expressed here are his own, with particular thanks to W&M colleagues Warrenetta Mann, Karin Wulf, Josh Burk, Janice Zeman, and Cheryl Dickter whose thoughts were twisted and blended into what you read here.  There is no warranty expressed or implied in these words.  While reading this essay may give you food for thought, actually printing and eating it will probably make you sick.