Guest Post: One Autistic Man Explains to RFK Jr. How Autistic People Aren’t a Disease

An autistic writer weighs in on the Health and Human Secretary's view of autism

Editor’s note: I’ve known Charles Lenchner, the political organizer wrote the post below, for years. We often discussed politics and related matters, but he recently came to me asking for an opportunity to write about an issue that impacts him personally as well. Below, he writes about living with autism and how he disagrees with our new Health and Human Secretary’s view of the topic.

Organizer Charles Lenchner. Photo credit: Charles Lenchner.

As with so many currents in our culture, autism has become a fault line and a stand-in for a spectrum (heh) of passionate people. As I am autistic, I deeply appreciate the ways in which society is more accepting than in the past. Unfortunately, Robert Kennedy Jr.’s appointment as HHS Secretary is a massive lurch in the opposite direction.

When I was born 55 years ago, there was a pervasive myth about autistic children. Because of a deeply flawed ‘expert’ named Bruno Betelheim, many parents believed that autistic children were the victims of cold mothers. We know so much more about autism today; back then, the label was applied mostly to those of us with the highest needs and who were least able to communicate effectively.

When I was two years old, a doctor told my parents that I might never speak or communicate “normally.” They didn’t use the word autism, but that’s what was meant. It was almost as if the doctor wanted to steer clear from the stigma of that word. My family was told to prepare for the worst, meaning future institutionalization. His more actionable advice was to emphasize stability, habits, and routines. For my well being – and the family.

Later in life, my mother told me with pride that she decided to ignore what the doctor said and just do her best to treat me like any other child. And it seemed to work: by age five you couldn’t shut me up – unless it was with a book. I still remember reading her Time Magazine at age six, and the World Book Encyclopedia at age 10 – rom A-Z. Nowadays we call that hyperlexia, a fairly common aspect of autism.

Growing Up In Ignorance

What this meant is that for my first 50 years I didn’t know that I was autistic. Only kids who banged their head against the wall or grunted deserved that label. My family just glossed over it like it wasn’t there and never mentioned it to my teachers or schools. Over the last few years I finally connected the dots and realized that a) I am definitely autistic, b) that I was diagnosed at an early age, and c) that by ignoring this aspect a lot of harm was caused.

Young autistics today don’t exactly have it easy, but there’s a language and sense of possibility that didn't exist when I was a child. None of the support systems and accommodations that would have eased my journey ever came up. My mother thought that ignoring this basic component of who I am while demanding that I conform to allistic* standards was good parenting. She was very, very wrong. So many of us suffered in silence and incomprehension for decades; only in the last few years has the phrase 'late diagnosed autistic entered common parlance. We were robbed of something valuable and our embrace of the label is meaningful and healing. *(“Allistic” is the term of art used to describe people who suffer from a lack of autistic qualities.)

Masking

There are countless stories about the cruelty meted out to autistic people. We were often the victims of bullying in school without ever understanding the root cause. The bullying never really ends for a lot of us. There’s always some other situation where callous people engage in some form of social ostracism, gaslighting, or hostility. Studies have shown that allistic people can figure out we're autistic very quickly and decide that they don't like us. While education and awareness can mitigate this, we're very far from changing this reality.

This is true especially when we superficially blend in. We might dress appropriately, move our bodies like our peers, and master communication skills; but there's always someone who just knows we're a threat. And in some ways we are: a common feature of autism is lack of regard for social hierarchy and status. Quite a few people are hardwired to see that as a threat. And so we try very hard to pretend to be allistic, to fit in better. To wear a mask.

Masking is what we call the effort to conform to allistic standards and modes of behavior. It extracts a toll, as would any other kind of demand to not be yourself around other people. We are three times more likely to kill ourselves than allistics. We suffer from mental illness – like major depression or OCD – at similarly inflated rates. We die 12-20 years earlier than our allistic peers. Our unemployment rates are between 40-85%. The comparable rate for allistics is around 15%, which captures both those seeking work and those no longer seeking work. We are exhausted from pretending to be neurotypical (NT) and traumatized at what happens when we fail.

Autism Can Be a Superpower

These facts don’t capture the wonderful things about being autistic, and those do exist. But the vast majority of us have to overcome significant barriers that allistic adults simply don’t face. This has given rise to a tongue in cheek neurodivergent supremacy movement. Like other marginalized groups, some of us embrace our identity with outsized pride that can be mystifying for the NT’s. They won’t let us fit in? Fine, we’re better than those losers anyway.

For example, many of us excel at seeing things for what they are, stripped of social or cultural obfuscation. We’re more immune to groupthink. We see patterns where others might see noise. And we have a wonderful propensity to point out that the emperor is not wearing any clothes, no matter how many good citizens say otherwise. It's great when these gifts are recognized and allowed to flourish; it's more common that they lead to social ostracism in our families, schools, and workplaces.

We’re lucky to live in a time when we can find each other more easily than ever before. The growing acceptance of neurodivergence allows some of us to be our natural, beautiful selves in public. We have organizations that provide community and advocate for us. Nonetheless, the burden of living with autism remains high. Not because of who we are, but because of how allistics are. They are the reason why we’re killing ourselves at such high rates, have worse overall health, and shorter lifespans.

RFK Jr. Is A Problem, Not a Solution

And this is where we come to our current Secretary of Health, Robert Kennedy Jr. He points at the increase in children diagnosed with autism as a crisis in need of a solution. He blames vaccines for our “disability,” flying fearlessly away from the current scientific consensus. This is incredibly damaging to us, as individuals and as a community, regardless of age or severity.

The vast majority of us -- assuming that we don’t also have other, more disabling conditions -- do not want to be seen as suffering from a mistake. We are who we are not because of vaccines or bad mothering. Our existence is a feature, not a bug. Genetics is the primary cause of autism, if you want to understand why it happened to this or that individual. More generally, autism is one of the ways to be human. The idea that autism can be cured or overcome is as insulting as the idea that gay people can be cured or that to be successful women should act more like men. We don’t want to be cured; we want to be accepted and allowed to be who we are. RFK Jr. stands for the opposite of that. Whether he understands it or not, he is guilty of inciting hatred and self-hatred against our community.

We defy simple categorization. The vast majority of us aren’t intellectually deficient. We have all the emotions and empathize with others. We see allistic social rules and cues, body language and facial expressions, and those linguistic tics and mannerisms that enforce social pecking orders. But other things speak to us more loudly. We’re intensely curious, so we ask indelicate questions. We want to get to the heart of the matter, so we don’t pad our words with softeners. We want the world to make sense, and often go out of our way to make it so, even when those around us don’t notice, care, or do anything about it.

April is Autism Awareness month. It’s nice that we get a special month and that it opens the door to people like me who are fighting for acceptance. But what we want is to not be that special. We want to be seen as just another way of being human, as normal and valid and as all the others. We want to live longer and more fulfilling lives. Sadly, we are still dealing with the reality that allistic social norms and prejudice are killing us. Please, please stop it. And whatever you do, don’t listen to anything RFK Jr. says about us.