Better Dead Than Me

I was diagnosed as autistic in 2017, at the age of 46. It was a diagnosis I sought out, after spending most of my life trying to figure out what was wrong with me. I struggled to spend any length of time in social situations, had an intense focus on tests and checklists, found it difficult to deal with change and had a rigid personality, lack facial expression that made social interaction difficult, and had a series of issues with food and other bodily sensations that I thought made a lot of sense but other people found extremely picky.

The typical symptoms of autism include:

  1. Difficulty understanding social reciprocity.
  2. Difficulty understanding facial expression, body language.
  3. Hyper-focus on limited pursuits.
  4. Repetitive behavior (or “stimming”)
  5. Tendency to interpret things at face value.
  6. Misinterpreting jokes.
  7. Hyper/hypo sensitivity to body sensations (inability to cope with noise or lights, but also sometimes an unawareness of normal pain levels, for instance).
  8. “Meltdowns” that result when pressed to perform as socially normal for too long.

Though for many years, society at large believed that mostly boys had autism and girls didn’t, it has become clear more recently that this isn’t true, that girls (and other marginalized groups) are simply not diagnosed. But girls in particular tend to have different symptoms. Socially acceptable behavior is pressed onto girls more heavily than boys, and as a result, many women are now being diagnosed into adulthood because they learned how to “mask” well. That is, they were able to disguise their autistic symptoms for certain periods of time and had learned long lists of rules well enough that they could perform “normal” behavior when pressed to do so. But it requires enormous effort and can be exhausting, especially after many years.

I’m a successful person by many measures. I’m highly verbal, precise in my diction, and attentive to rules. Because of that and my ability to read extremely quickly, to use my intense focus on school and testing, I graduated with a B.A. and M.A. only two years out of high school. Then I went on to get a PhD from Princeton at age 24. But the difficulty of managing the social part of academia was beyond me. I was too blunt, too difficult. I eventually ended up turning to the perfect lifestyle for an autistic woman, that of a writer. I could spend almost every day at home and had very little need to learn how to socialize. Until I ended up on a national best seller’s list for The Bishop’s Wife. Then I began to see my problems. Schmoozing was, well, difficult, to say the least.

But still, the most common response I get from people when I tell them I’ve been diagnosed as autistic is “that’s impossible.” I’m highly verbal. I manage noise and faces and jokes and unstated expectations and nuance and metaphor as well as anyone who has been diagnosed with autism can. My ticks are pretty minimal, and my “meltdowns” tend to happen at home, behind closed doors. I don’t rock back and forth. I clearly have empathy in spades. I dress normally, if only because of a fashionable sister, and my refusal to wear makeup comes up only rarely.

And yes, I know I’m privileged in the autistic community. I know that my parents like to brag about my accomplishments. No one points to me when they want to talk about how terrible the rise of autism is and how it’s linked to vaccinations. They don’t point to me and say, “I don’t want my kid to grow up like that.” They don’t point to me when there’s a measles epidemic and say that I’m the reason that parents are letting their kids die of diseases we know how to cure.

Nonetheless, I am autistic. That means that the current national disgust with autism and autistic behaviors feels very personal to me. Parents who talk about an autistic child as a “life sentence” are also speaking to me. When they tell me that it’s necessary to brutalize their children, pushing them or embarrassing them in public, what I hear is “we need to destroy our child’s self-image and force them to mask their autism rather than let other people think they are going to grow up to be like me.”

What parent doesn’t deserve to have a “normal” child who does normal child things like going to the Prom, playing sports or stopping a video game long enough to say hello to their grandparents? We should pity these parents, right? We should be spending money to “cure” autism so that no parent ever has to deal with a child who won’t comply with “normal” demands.

Or we could change as a society and begin to see autism as a neurodiversity that is sometimes useful and is always still a part of humanity. Brilliant, creative, artistic people from Dan Akroyd to Darryl Hannah have come out as having a mild form of autism. Many speculate that Isaac Newton, Henry Cavendish and Albert Einstein might have been autists and ask whether Bill Gates, Tim Burton, or Steve Jobs might have been diagnosed with autism in their younger years, if such a diagnosis had been more widely known. The joy and the leaps forward in technology and science that autists have made in our society are immeasurably valuable.

Do the parents whose child has been diagnosed with autism think about the possibility that their child may also grow up to be like one of these famous people? I hope they do. I hope we can begin to start talking more positively about the different sides of autism, just as we do about people who have ADD or mental illnesses like depression or schizophrenia. If there were the same terrible prejudice against depression, would we be testing children for it at a young age and stigmatizing them for the rest of their lives? Would we talk about the “epidemic” rise of depression and how it, too, could be linked to vaccines? Would we hear parents say they’d rather their child died of diptheria than that they had ADD?

Vaccinations are not what gave me autism. My brain works in a different way. I don’t talk about myself as “having autism,” but as “being autistic,” because it’s impossible for me to imagine myself without autism. All of my best traits are inextricably linked with autism. I would never have accomplished all that I have without my autism. And yet, it also is a disability at times. It makes social interaction difficult. I get frustrated that I can’t spend just one night talking to a group of ten friends because I get sensorily overwhelmed. I like spending time with friends, but I have to make rules for myself or I will spend a week recovering in bed.

We have a long way to go as a society in accepting autism as the wonderful neurodiversity that it is. First of all, we need to do a better job of depicting autistic people as something other than unempathetic assholes who abuse others, or as nonverbal children who do nothing but rock back and forth in dark rooms. I am, of course, writing a couple of books of my own that are autism positive, for adults and teens. But please, other media makers, if you’re depicting an autist, ask an autistic person for some advice. Better still, ask multiple autistic people, because the spectrum is just that, a spectrum that has many different variations of the symptoms. And please also consider that the behavior you see as unempathetic may actually be revealing your own prejudices. Just because emotion doesn’t show on the face doesn’t mean it isn’t there. If you learn to interpret an autistic person’s physical cues, you’ll see that most of us have emotions just like you do. And if you learn how to communicate in a more literal way, without relying on hints and body language, we can understand your emotions better, too.

And also, please get your children vaccinated. Autism should never be a reason that people let their children die.

Written by

Author of The Bishop’s Wife mystery series, The Mormon Sabbatical Podcast, Princeton PhD, fiction editor at Exponent II, autist, she/her

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