Autistic kids don’t need mastectomies

Image: Pixabay

More and more frequently, I read about autistic youth being diagnosed as transgender. As a bisexual woman, it’s a double whammy to see how many LGB youth are being encouraged to transition, and to share the concern of other LGB adults who read the transition stories of young people, even small children, and find ourselves thinking that this could have been our own story. These concerns are almost frantically brushed aside with claims about suicide risk that don’t stand up to scrutiny.

When I read statements from parents and medical professionals about dysphoric young people or kids who just don’t fit in, it sounds as though they think they’ve discovered the first ever generation of kids who hate their bodies or don’t fit in.

To be clear, I’m not talking about people who had full, successful lives as heterosexual males, with families and distinguished careers behind them, before they drastically upended their lives. Their experiences are as if from another world. But when I read stories about kids — especially girls — who had childhood crushes on the “wrong” people, played with the “wrong” toys, or felt awkward all the time and were isolated because they couldn’t compensate, I relate. And I worry.

What The Hell Was Wrong With Me?

When I was growing up, it seemed like a kid had to be in pretty serious shape to get diagnosed with any kind of mental health need. Probably most cases of what used to be called Asperger’s syndrome or high-functioning autism spectrum disorder went unnoticed until well after I left school. The awareness that mild autism was something that girls had, as well as boys, was close to nonexistent.

I didn’t get diagnosed until I was around 30, during counseling for an unrelated matter. But my therapist treated a lot of adult cases like me in the local software industry, and was practiced at recognizing the type. All of us were apparently people who had never quite fit in, in ways that fit a certain pattern, and hadn’t known why before.

I was full of misconceptions when that therapist first started talking to me, because I only knew what had filtered through from pop culture or what I’d read in articles about language-impaired autistic children. There were uneasy comparisons that I remember people making between me as a child and Dustin Hoffman’s iconic Rain Man character, and one of my peers at church said they called me the “idiot savant” when I wasn’t around. Though I never considered that these were more than insults because I was obviously, I thought, just a freak, and not really disabled like those kids who could hardly talk.

Mom said the other kids were just jealous because I was so well read. I was well read, but I knew something else was going on.

I thought I couldn’t be autistic because my language skills were fine, and I’d started reading at a very young age. But my therapist said it was typical of people with Asperger’s to read early and have good language skills. I remember saying that I couldn’t be autistic, because I thought autistic people didn’t have strong emotions, and that didn’t sound right to me. He said that I was mistaken, and that autistic people had emotions like anyone, but have a hard time expressing themselves and reading the emotions and body language of others. It was a communication deficit, not an emotional one. Oh, I thought. Oh. Well.

On a subsequent visit, I brought him a handwritten list of traits I had that were out of kilter with the lives of other people and things I’d done as a child that seemed unlike my peers, as well as coping strategies for these obsessions. He looked at the page, which was covered from margin to margin in small, bullet-pointed lists and sub-headed blocks, in my tiny, personal font, and he said that the layout of the page itself was almost a diagnosis.

He had me read Nobody, Nowhere by Donna Williams, and I learned about not only the inner life of another autistic person besides Temple Grandin, but also that there were vitamin deficiencies that seemed to be commonly associated with the condition, and that correcting them could help a bit. He had me read Songs Of The Gorilla Nation by Dawn Prince, and I realized that autistic people weren’t all straight, and that they might respond to life through hypersexualization, and also could want and maintain romantic relationships. From both books, I came to understand that a desire for social isolation wasn’t a trait inherent to the condition, and that an autistic person’s social skills could be improved with effort.

Back then, someone like me didn’t know any better. Autism wasn’t discussed like it is now. So in spite of it being difficult to accept at first, I was also relieved to know that there was a name for what I was, because North was finally marked on the compass of my social experiences.

That wasn’t all. When I was a child, some of the chronic pain conditions that have plagued me all my life had begun to manifest. But I didn’t tell anyone about them. It didn’t occur to me. I didn’t know that I shouldn’t have hurt so often. I liked to read books more than talk to other kids or run around, so I learned to block out the pain and escape in my mind. I told myself that I preferred to sit on a bench, by myself, reading. Nearly every day.

More is being discovered about other conditions common in autism, some of which I’ve also found myself dealing with over the years. While the causation remains unclear, people with autism are likelier to have Ehlers-Danlos syndrome, a connective tissue disorder whose chief symptom is joint hypermobility, and is commonly associated with low muscle tone and chronic pain, but also with digestive or circulatory problems and respiratory disorders. Digestive problems and migraines are more common. There may be other psychiatric or developmental issues — this includes obsessive-compulsive disorder, which may manifest as a persistence of truly alarming, but intrinsically harmless, thoughts. Women on the spectrum are at greater risk for anorexia. Having one or more conditions like this can complicate a person’s life, even if they are someone who’s able to be self-sufficient.

So I hope that young people with similar conditions today are also getting asked about their health, their sensations, their subjective experiences of wellness. Not by people on social media, but by the doctors, teachers, and parents who are obligated to do what’s best for them.

Because when I’m unwell physically, every social interaction is that much harder — that much more confusing. When I hurt, it’s harder to control my reactions. It took years to figure out how to manage my health in a way that let me be at my best.

People aren’t supposed to be tired and hurting all the time. Neurotypical children who are tired or hurting on a routine basis will likely tell someone about it, or it will be spotted because they’re regularly socializing with others and someone will notice and ask. The strange kid who reads by themselves, partly to shut out social confusion and partly to shut out physical discomfort, isn’t going to get their health needs noticed by the usual methods. Autistic individuals with significant language issues or delays surely have it far worse, though.

Everything got worse at puberty — a time when things get worse for every person I’ve ever heard of. One feels awkward, out of sorts, and confused by what’s happening to them. Girls almost universally report discomfort with periods and the changes in the shape of their bodies, as well as with the increase in male attention and harassment. I don’t know to what degree my experiences were like or unlike others in severity, but that’s partly because I didn’t talk to others about them. I continued to try and ignore the physical experiences I was having.

I didn’t have many friends, and looking back, that’s no surprise.

We Didn’t Sit Together

An example: People pinched me and tweaked my nose a lot as a child, as a joke. My church endorsed corporal punishment of children, and sometimes this also came in the form of pinching. I was in first grade before it was made clear to me that pinching was inappropriate behavior when interacting with my peers. Typical children, like the ones around me at school, would have already figured this out.

Needing to make a deliberate (rather than an automatic and subconscious) effort to imitate others, means needing to be very deliberate about whose behavior to aspire to. If we imitate people who model a lack of appropriate boundaries — who egg on the type of social transgression that comes from poor situational awareness — there’s only so much that “I didn’t understand” can be expected to solve.

Picking up antisocial behaviors from peers will hurt an autistic person more than a neurotypical person, because we won’t correctly perceive the status markers of the people around us, and we don’t switch social categories easily. We might treat a boss like a peer, make comments in mixed company that would only be appropriate among same-sex friends, be overly familiar in ways that unintentionally come across as flirting, or dangerously miscalculate another person’s level of provocation. It doesn’t help that our strangeness is like a magnet for people who recognize the uses they can make of it, how much they can get away with or convince us to do if they manipulate our loneliness.

Abusive and narcissistic people love to get hold of autistic people to play with. There are few better life skills for us than to learn to avoid those people as if our lives depended on it; they might. Remember that they’re disproportionately likely to be popular or powerful, excessively confident, and cheerful in groups. Watch and be cautious if someone popular takes a sudden and inexplicable interest in you. If you run across someone describing personality disorders, like narcissism, as though people who have them are oppressed and unfairly maligned — which, unlike autism, they aren’t — leave.

An autism spectrum young person doesn’t fit in, no matter how hard we try or how lucky we are in our company… And we know it. Plus, we miss social cues. This means that we miss the suggestions of adults and peers, communicated via their reactions, that say we should do this, not that; like this, not the other. We slept through person class, and also didn’t know there was a class, or tests. So many tests.

We’re awkward. And I don’t just mean cute and quirky, I mean that we miss people indicating with their body language that they disagree with us, are bored, or want us to go away, which would ordinarily indicate that someone is being rude or domineering. This is something we can perhaps learn to overcome, or we simply learn to withdraw in order to avoid tricky situations. We tend to figure this out in life a lot later than other people.

But that happens if we were talking to you in the first place. We probably weren’t. Maybe we were reading, or staring at the ground, or fixated on doodling. Do you know anything about 18th Dynasty Egypt? Dinosaurs? Do you read Asimov? Oh, too bad. What was your name?

The constellation of this behavior and response makes kids on the autistic spectrum targets for bullying. People don’t stand up for us, as we aren’t good at securing allies or making friends. We will talk or be silent at the wrong times. Our affect or expression is often flat. People don’t relate to us, nor we to them, without deliberate effort of a sort we’re ill-suited to understand that we need to make.

Early on (or if we never learn to make the effort) we will be read as saying rude things through our body language that we didn’t mean, and didn’t understand we were saying. Therefore, a lot of the childhood socialization that we get is people being rude to us out of exasperation, and us being very, very confused. It can make us harsh people. Not necessarily mean, though that too sometimes, and this is what we’re too likely to reflexively mirror.

What would you be like, if your early childhood socialization had been more predominantly people being rude to you or angry with you, including your demographic peers? You might be different, I think.

Then there’s the overstimulation. We can get very bothered or frustrated by things that don’t bother other people at all. Noises, lights, and sensations can all affect us like a bullhorn in the ear at close range. This can make it hard to keep our equilibrium and focus.

If I were a young person now, I’d likely get diagnosed in school. If I were in a well-funded school district, I might have an individual education plan set up for me by a specialist, and have regular support services to help me be more productive in a classroom environment. Hopefully, the adults in my life would understand things like this, and be prepared to explain enough to me that my social development would better keep up with my peers:

“Simon Baron-Cohen, who developed the empathy quotient test, makes the distinction between cognitive empathy (you find it easy to intuit what other people are feeling) and affective empathy (you can’t guess what other people are feeling, but when you know, you feel it too). People with autism score very high on affective empathy and low on cognitive empathy, and people with psychopathy are the opposite; put simply, they can read people easily but don’t care about them.”

Something else might happen if I were growing up today, though. Which is that because of atypical interests, discomfort with the body, discomfort with feminine social roles and clothes, and same-sex attraction, a young person just like I was might be told she is transgender, and really a boy. She might be put on puberty blockers, then cross-sex hormones, then given a mastectomy, and probably a hysterectomy not many years after that.

None of these treatments have, that anyone has said, been studied as care for the social isolation that autistic young people often experience because of our communication deficits.

I’m not a doctor, and can’t give medical advice. However, I suspect that getting a mastectomy will not teach one how to make eye contact, or not to stare at the details of people’s clothes. I think a hysterectomy probably doesn’t help one to gauge an appropriate distance from others at which to stand, to realize when to stop talking, to make easy conversation, to express appropriate (but not prying) concern for the welfare of others, to stop answering rhetorical questions literally, to spot when others wish to change subjects, or to realize quickly when people are making fun of you or taking advantage. I don’t think that taking cross-sex hormones is likely to help one to understand whose behaviors you’re meant to imitate, and whose behaviors you’re meant to respond to with either compliance or resistance.

Will a mastectomy help self-control in response to sensory overload, either from uncomfortable social situations or intense environmental stimuli? Will a mastectomy help with task organization, completing paperwork, or making appointments?

I very much doubt if these are challenges that any surgical intervention on healthy tissue, or any supplementary sex hormone injections, could even be imagined to help with.

There’s not really an easy answer for how to face these social and sensory issues. But getting lost in navel-gazing or fixating on our unhappiness doesn’t help. Reading can help; either you’re reading non-fiction and learning something practical, or you’re reading fiction and learning empathy. Taking on practical tasks can build a record of skilled knowledge and accomplishment that can be a foundation not only for a career, but for meaningful relationships with others. The day we stop trying to escape into illusion and start inhabiting our lives fully, new possibilities open up.

Stereotypes Are An Illusion

As a girl, it would also be easy to fall into the common social mistake, one that even scientists often make, of confusing the narrow lens of how men and boys act in society towards women and girls with how people ought generally to behave, or how human beings “naturally” behave.

The particular problem with naturalizing stereotypes of male behavior, particularly in connection with autism, is that neurotypical men without developmental disorders don’t have any sort of obvious communication deficit in adulthood. A man who has a hard time talking with women as romantic interests doesn’t necessarily have a problem talking with other men. A man who complains that he can’t figure out “what women want” doesn’t necessarily have a problem negotiating a contract in a meeting with other men or assessing whether his friend Chuck might want to go out for a beer tonight.

Too often though, as soon as we begin talking about how men and women communicate, the conversation easily, and probably unconsciously, veers in the direction of how men and women communicate with each other in the context of romantic and domestic relationships. Yet in relation to each other, especially in romantic and domestic relationships, women are subordinate to men and this power dynamic should be seen as the dominant factor in communication strategies. People aren’t as motivated to extend their higher social skills towards people they regard as subordinates, and most men see women as subordinates. This doesn’t indicate a lack of social skills, but rather, an abundance of contempt.

If it were true that social delay and communication deficits were characteristic of the “male mind,” while the opposite was genuinely true of women, then what we would expect to see in the public sphere is for the fields of sales, diplomacy, oratory, psychiatry, politics, or even hostage negotiation, among others, to be dominated by women. These are fields where success requires a strong theory of the minds of others, keen social perception, anticipating the needs and interests of others before they’ve even brought them up, and high sensitivity to whether one’s statements are being well received or trusted in the moment. You might expect for men to have little hope of making headway in these occupations if the “male mind” theory of autism said something true of men’s social skills generally… After all, men aren’t good at communicating, right?

But try to think of a prestigious occupational field, or sphere of high achievement in arts and letters, that depends heavily on social communication and empathy that isn’t also strongly dominated by men. There are the rare exceptions of advertising and public relations, but notably, both professions have the aim of boosting the reputations of others.

The only other common exceptions to male domination of communication professions tend to be caregiving occupations that are already heavily sex-segregated, or that are otherwise associated with women’s traditional spheres of reproductive and care labour. The woman-dominated fields are generally among the lowest paid occupations in their job classifications, because of sexism. This doesn’t tell us much about how good neurotypical people are at communicating, nor the extent to which this is valued by sex.

Once again, sexism overrides critical thinking and hides implicit assumptions, to the detriment of us all.

How Do You Feel?

A girl on the autism spectrum isn’t really a boy because she finds the itching, lightness, or noise of many girls’ clothes and accessories unbearably distracting, or because she has a hard time talking to people. If she socially transitions, and is accepted as a boy by peers, those other boys are still going to expect a normal level of social awareness from her. They will still expect her not to stand too close and to make the appropriate small talk.

I was not a boy even though I hated it when my breasts grew in. Not even though I thought they were too big, too warm in the summer, too obvious in light clothes, and near impossible to neatly fit into well-fitting buttoned clothes. But who doesn’t complain about theirs? In my experience, almost all women do, eventually. I grew up in Los Angeles, and people talked about plastic surgery often. Breast augmentation became a popular topic, because it seemed obvious that whatever kind you had, there was something wrong with them. Even the women everyone in the media agreed were “beautiful” didn’t like theirs.

Where are the women in our media-saturated culture who look at themselves and are totally happy with what they see? Today, there are 15-year-old girls seeking cosmetic labia surgery —  this should tell us a lot about what girls are taught to feel about their bodies.

Early, adverse experiences and physical discomfort led me to almost entirely dissociate from any sensation of pleasure in the erogenous zones. It was as if I were numb. Yet, I wasn’t in the “wrong” body. Just an injured, frightened one. It was a body that I had to reconnect with, and eventually did. I was numb, but now I feel.

How do you feel? Right now, I mean, in your body. Not what your mind is preoccupied with, but the nerve sensations of the body. Even if, as I did for much of my youth, you have become practiced in numbing them out and ignoring them, this sensory feedback of how the body feels is always with you.

Hurt to the body is hurt to you, yourself. A badly healed scar, or nerve damage from a surgery is always at the edge of your awareness. That overextended joint or cramped muscle, the dull ache and twist of an upset stomach, all enough to drive you to distraction if you let it. The problem with being autistic is that it’s harder not to let it.

And even if you can shut it out, even if you can distance yourself, it’s an effort that can drain away the focus you need for critical social tasks.

I’ve needed four abdominal surgeries, starting at seven-years-old, when I needed treatment for a serious infection, peritonitis. The doctors who treated me then said that there could be problems with scar tissue developing and hardening, or constricting my organs, for the rest of my life. They guessed right. The last surgery, two years ago, for an ectopic pregnancy, could have been a small surgery in a healthy person. Scar tissue buildup made it impossible to maneuver a surgical camera safely within my abdomen, requiring a full, hip-to-hip incision.

A doctor can be as careful as possible, and you never know how a surgery is going to turn out. You can’t know what it’s going to leave you with, or how hard going through recovery and years of subsequent aches might make you as a person.

Be deeply skeptical of people who talk about major surgery as if it were a casual affair.

People on the autism spectrum may have serious medical and therapeutic needs. We may also have trouble holding jobs or maintaining social networks. If a person adds to this a need for even more very regular checkups and medical treatments for the rest of their lives, it could be very challenging. Especially if your life and employment are unstable, or if you aren’t good at keeping records and managing appointments.

Further, what can seem manageable when you’re young and healthy, or when your parents are more involved in your life, might seem very different if you’re in your early 30s and haven’t had a stable job for a couple years. And consider that even if you’re able to attend college or hold down a job and be on your own at the age of majority, your emotional and social awareness is probably behind your peers by a few years in ways you don’t even see.

If you are autistic, life won’t be easy and you won’t always be the same as you are now. It’s impossible to predict exactly how anyone will change as they get older. The ex who told me that I would — and should — eventually mature out of my interests in politics and science fiction missed that one by a mile. But you can probably count on eventually getting more tired, weighed down under more obligations, and steadily less healthy with age; that’s the best-case scenario for any human life.

Plan accordingly, if you can.

Your Body Is Not A Social Construct

A discussion of physical symptoms and medical care may sound boring in the abstract. I promise you that when it involves your own, personal body, it instantly becomes riveting.

Never underestimate the ability of your body’s suffering to entirely capture your attention, your time, your everything.

But you can’t be born “in the wrong body.” You were born in your body — the only body you will ever have, the body that is also you in the only sense that anything can be socially recognized as you, yourself. Hurt done to your body is done to you. Hate directed at your body is directed at you, personally. Every wound inflicted on your body is a debt that your future self will have to pay.

Mental distancing or disassociation from the body is usually a sign of trauma or illness. For instance, when you’re experiencing chronic, low-grade pain, you probably need to be able to tune it out just to function. But disassociation isn’t a healthy or objective statement about your relationship with your body, without which you would not exist in any sense relevant to the living.

Because you are your body, and your body isn’t wrong. It’s just you, as your mother made you. There is nothing wrong with the mere fact of your existence. How you look or what shape you are is irrelevant.

There’s Always A Cost

Two years ago, when I was treated for that ectopic pregnancy, I was heartbroken. But I thought, well, there’s still time to try again. And it turns out, after recovery and over a year of very intense medical scrutiny regarding this question, my doctors have found that this hope was misplaced.

Too much scar tissue from too many surgeries, probably constricting blood flow within the abdomen. Some combination of insult or injury has turned my immune system against my endocrine system, which includes the ovaries. And so I have been mourning that loss a second time as if it were fresh.

It’s something that, if you had told me would happen when I was a teenager, might once have sounded like a relief. If things had gone a different way for me, maybe I would have always thought that. It’s hard to say. I’m glad that my options were not foreclosed entirely, though.

As a young woman, I struggled with the fact that I always came up at the bottom end of the popularity curve, often way behind people who seemed to delight in making my life miserable. I would have grabbed any explanation to work from to try and improve that situation. Once I had an explanation, it was the deliberate work of years to figure out how to blend in better, and I’m still not great at it. But I’m okay, and my life has purpose.

And after such a journey as I’ve had, I read stories about kids who could have been me, and I worry about them, as I said. It’s often suggested that the only reason to object to the medical transition and chemical sterilization of teenagers is because of religiously-motivated bigotry. I don’t think that’s right.

I was born into a very conservative religious household, where our family faith asserted that acting on same-sex attraction was wrong. It took a long time to realize how much that had hurt me, how much I’d suppressed of myself to avoid that condemnation as a young person. But now, I’m so glad that I was fortunate to have grown up in a household that merely disapproved of the actions I might someday take. To have been raised in a household where my family had egged on the idea that I had a “male mind” and so was really a boy, and really needed puberty blockers before my body matured, and really needed testosterone, really needed surgery… I can’t bear the thought of even the additional physical suffering involved. Let alone to think of all the experiences I might have missed out on.

I can hardly know what’s right for every person, of course. Though as someone who’s had to manage a social delay, chronic pain, and too many major abdominal surgeries, I can say that I’m glad I had time to be patient with myself, and that the regrettable decisions I made as a teenager weren’t irreversible.

I have grave concerns that, in rushing to encourage those of us who have social and developmental delays to pursue medical sterilization at quite young ages — treating our social nonconformity or age-inappropriate behavior as a mismatch with our bodies — society is simply repeating the mistakes of the eugenics movement. This time, with a smile and an affirmation. I may still miss some social cues, but I’ve been around long enough to know that people who are smiling and saying they’re trying to help aren’t always really helping.

Natasha Chart

Natasha Chart is an online organizer and feminist living in the United States. She does not recant her heresy.