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Day: March 23, 2018

Autism, parenting, and my silence on recent “autism mom” memoirs

Posted in Uncategorized

I had planned to sit down today and give you guys the Handbook For Con Artists recap you crave, but a Twitter conversation prompted me to write this post, which has been coming for a while. I’ve talked on social media (and maybe here) about the fact that my teenaged son is autistic. And I’ve finally got the courage to say that I am, too. I am autistic.

This might have been why I didn’t consider the possibility that my son was autistic until he was seven years old and someone suggested it to me. A lot of the things he did at a young age, like flapping his hands and walking on his toes, melting down when he was overstimulated, becoming passionately engrossed in specific singular interests that could change in an instant, and other behaviors I won’t go into just, you know, because it’s not entirely my stuff to share, were things I had done when I was child, and I wasn’t autistic, so it never occurred to me that he was anything other than neurotypical. Even after diagnosis, I assumed that those were things neurotypical children all had in common and that other things “made” him autistic.

Now, I look back at my own childhood, much of which I don’t remember accurately due to my inability to recall what parts were real and what parts have been obscured by the elaborate fantasies I’d constructed. I was the weird kid in middle school, so I retreated into my head. While I sat at my desk physically, in my mind I was in my “head house,” a space that I constructed after learning about something called the method of loci (not to be confused with the genetics term loci). To this day, when I’m stressed almost to my breaking point, bored to the edge of literal tears, or caught in a situation I don’t want to be in, I fully check out of reality and go there. It’s not a case of idly daydreaming; I am completely immersed in that world and fully absent from this one. It has evolved over time, the decor has changed slightly, and there’s a big giant button on the wall that turns off intrusive thoughts if I push it. It’s a great self-preservation strategy that had a disastrous effect on my education. Teachers asked me why I wasn’t paying attention, why I wasn’t turning in my homework, why I wasn’t completing tests. I couldn’t give them an honest explanation. I told them what they wanted to hear because I already knew I was “a handful,” but lying to them because I thought I was giving the right answer made me even more of a handful, and I couldn’t figure out why.

“Jenny’s a wonderful girl. So imaginative. But she’s a handful.” I’d heard that so many times. Once, back in my elementary school days, I was playing with my cousins after Sunday dinner at my grandmother’s house. Seemingly out of nowhere, one of my uncles became furious at me. I didn’t know why; his kids and I had been playing a game where I was a mad scientist, one of us was an Igor, and one of us was a zombie creature that didn’t have a brain. To this day, I have no clue what I did wrong. Maybe I was too loud and obnoxious. Maybe I hurt one of my cousin’s feelings and didn’t notice, which I was prone to do because I didn’t understand which actions resulted in which reactions. What I do know is that one second we were playing and having fun, and the next my uncle stood up and said, “I’ve had it with that god damn kid!” and stormed out. Everyone sat around stunned. I was humiliated, but I didn’t feel like I deserved to cry, though I wanted to. My mother was furious with my aunt and uncle for weeks. My grandmother fielded hours of mediation phone calls over the incident. That became kind of a hallmark of my otherwise happy childhood: somehow, I would do something wrong, an adult would shout at me in front of people, and I would go off on my own away from the other kids because I saw how much my badness hurt the relationships in my family.

In second grade, I was diagnosed with ADD, like so many kids of my generation, and fed a steady diet of Ritalin. I’m not anti-pharmaceuticals as they’re used today––for god’s sake, take your pills, no matter what indie movies say––but I do believe that Ritalin was over-prescribed in the 1980s as a sort of “make your kid a behave” pill, based on anecdotal evidence from other people my age. Though Ritalin was supposed to make me focus, it did basically nothing. I ended up in some kind of group therapy situation where we all learned coping skills, and that worked better than anything. It was like a guidebook on how to be a normal kid. All I had to do was painstakingly imitate the way other people were acting? I could do that! I loved acting! It didn’t fix everything, but adults stopped yelling and I didn’t get into trouble as much, except where education was involved.

Again, this is stuff I still do. I recently told a friend about one of my most secret desires: to successfully say, “Don’t eat that, it’s horrible,” as a compliment. You know, the way people will tell someone, “Oh, don’t eat any of that, it’s just horrible,” in a joking way that implies they don’t want anyone else to eat it because they want it all? If you’ve never botched the landing on this particular phrase, trust me: there is no coming back from it. I’ve tried it on a few occasions and it did not go over well. I end up replaying it over and over like a gymnast watching themselves on video to see where they made a mistake in their routine. I spend a lot of my time studying neurotypical humans and their interactions as though I’m a complete outsider to the entire species, trying to figure out how to best camouflage myself. It’s just as much work and just as alienating as it sounds. I’m always woefully behind by a decade or so of social development, it seems like. But one day, I fully believe I’ll be able to pull off a chuckle and a “don’t eat any of that, it’s just awful.” I was gently informed that most people don’t practice these types of easy social interactions with the goal of someday doing them correctly.

When my son was diagnosed, I began to seek out other parents of autistic children, because it was something I was told would be very important in helping me “deal” with my child. I didn’t see what I needed to “deal” with; as far as I knew, he was growing up exactly the way I did. I mean, how could I really be sure he was autistic? He was just like me and (all together now), I wasn’t autistic.

One of the things I noticed very early on was that “autism warrior mommies” (and yes, there are people who call themselves that) were easily sorted into three camps. One type became so obsessed with their child’s autism that having an autistic child became their identity and the kid was kind of an afterthought if they were a thought at all. Or, they suddenly started diagnosing their neurotypical children with autism in a sort of Munchausen-by-proxy-by-proxy kind of deal; when the kids would be evaluated and deemed neurotypical, whoever administered the evaluation didn’t know what they were talking about, didn’t listen to parents, shouldn’t be in that profession, had a personal vendetta, etc. Then there was the third kind of parent: the self-diagnosing autism mom.

A note here: Some parents do have to fight to get their kids a diagnosis when resources are denied by schools and government programs. Some parents are autistic and don’t know it until their children are diagnosed, specifically because healthcare providers and educators weren’t as familiar with autism in previous generations as they are now. But as someone who has spent a lifetime carefully studying humans, I feel I can say with confidence that some people are just insistent on being the center of the universe. And that’s pretty evident with some of the self-diagnosing autism warrior mommies. I became highly suspicious of some mothers who would self-diagnose, then start speaking with authority on their children’s’ experiences, even if those children were able to communicate their ideas, feelings, and opinions themselves. They asserted themselves as experts on autism and would become intensely defensive if another autistic person contradicted them or suggested they not share intimate details of their child’s life online. One self-diagnosed woman in a Facebook group graphically described her seventeen-year-old son’s toilet accidents and admitted that he didn’t want her to continue doing it, but she asserted that she was “far more autistic than him,” and therefore had the right to do so. I began to see self-diagnosis as fake and selfish, an attempt by a parent to center themselves when their child was getting too much attention or starting to rebel in the ways children are supposed to rebel.

I wondered why any of these “autism warrior mommies” couldn’t understand that their kids were people. That no tragedy had befallen their families. That they had never been guaranteed a neurotypical child, and that the idea of an autism “cure” was abhorrent when there were already constructive therapies and special education programs that could improve the quality of life for autistic people living in an unforgiving and aggressively neurotypical world. So much of their “activism” was performative and self-pitying. It was never about autistic people at all, but all the ways neurotypical people were burdened by the existence of them. Why couldn’t they see that?

Earlier this year, someone tweeted a link to a diagnostic tool being developed to evaluate adults for autism. I’m not entirely sure about all the specifics about it, but from my understanding, they were looking for both neurotypical people and people on the spectrum to take an online test to…I don’t know. See if their test worked? I’m not a scientist, so I have no idea. I thought, “okay, I’ll bite,” and took the test. When I say “online test,” I’m not talking about some kind of thirteen question, Buzzfeed-esque “design your dream wedding and we’ll guess how autistic you are” quiz. I recognized a lot of the questions from the tests administered to my son and the exhaustive questionnaires my husband and I’d had to fill out during the process. When the results were displayed, it didn’t say “YOU GOT: AUTISM!” with a twee description and a gif from The Gilmore Girls or anything. It just suggested consulting a professional and showed me that my final scores were about a hundred points over the threshold they were using to describe neurotypical people in their diagnostic criteria.

I called my friend Bronwyn Green immediately. “Do I seem autistic to you?” I demanded, and she said yes. I asked why she didn’t tell me: “If I thought you seemed autistic, it would have been the first thing I said to you! I would have been like, ‘hey, you seem autistic!'” She said, “Jen?” and waited silently for me to make the connection. And then the connections kept coming. I showed my husband the scores and he said, “Yeah? You’re autistic.” It was some kind of open secret I had never been in on. And soon, I was a self-diagnosing autism mommy. And I hated it.

Here’s where things really go sideways to me: I believe it when autistic people tell me they’re autistic, even if they’re self-diagnosed. If someone is suffering from anxiety, depression, OCD and they self-diagnose it? It makes perfect sense to me. But it picks away at me to think that maybe I’ve gaslighted myself into becoming self-diagnosing autism mommy. Occasionally, it occurs to me that maybe there’s such a thing as autismdar. Like gaydar, but for autism. I maintain that LGBQA+* identifying people have an innate ability to tell if other people are straight or “one of us” after years of painstakingly pretending to be heterosexual while we’re closeted. Is the same true for autism? Is the reason I resent and doubt the mothers who use their self-diagnosis as both a weapon and a shield because I’ve spent so many years studying neurotypical people as a means of protective camouflage that I can now spot them from a mile away? I’ve met parents who self-diagnosed and thought, “Yeah, sounds about right,” while others I’ve rolled my eyes at and thought, “Yeah, right.” What creates the difference? can’t diagnose them, so why do I doubt some people but not others?

At this point, you might be rolling your eyes at me and thinking, “Yeah, right.” Because a lot of the times, I’m doing that, too. Despite all the evidence, despite it seeming absolutely natural and right to me to think, “I am autistic,” I worry that those moms who say, “Well, I’m autistic and I support Autism Speaks!” or “I was autistic, until I started focusing on my gut health,” feel like it’s natural and right, too. I’m not the gatekeeper of autism. I don’t know who is. Do I have the right to doubt some self-diagnoses but believe others? Do I even have the right to diagnose myself?

In the middle of all of this soul-searching, two books have been hot topics in the literary world. One of them, written by a woman referred to as the Elmo Mom, details all the ways she’s using “exposure therapy” (i.e., dragging her screaming, terrified child into situations that traumatize him) to right the wrong the universe did when it saddled her with an autistic son. In it, she daydreams about abandoning her son to have a new and better life with her neurotypical daughter. She expresses open hatred and abusive, neglectful behaviors then tries to justify them by imploring the reader to consider her own pain. She relates “and the whole bus clapped”-style anecdotes about kindly strangers coming to her rescue and praising her for her saintliness. She recently wrote an online essay about bystanders cruelly judging her for bodily wrestling her resisting, screaming child into a Sesame Street Live performance, asserting that her son has every right to be there. She never considers that he has every right to not be there, as well. In the end, he does sit through the performance, and she receives her reward: an hour or so of being able to deny that her son has autism.

Another book, the title of which I’ve forgotten, is the memoir of a woman who has no qualms about stating that she plans to have her autistic teen sterilized, lest he impregnate someone and she’s forced to deal with it. You’ll have to forgive me for not looking up this title and author; I just can’t handle reading her sickening garbage, yet I’ll still find myself compelled to.

Several readers of this blog have contacted me about these books, wondering if I would write a post about them or bring attention to them on social media. Like a coward, I ignored those emails. If you were a person who contacted me and didn’t receive a reply, I apologize for my rudeness, but this is all fresh and raw to me. It’s not that I’m struggling with the tragedy of finding out I’m autistic. That part of the experience is very much like the time I found out I have a deformed blood vessel in my brain. It was a thing I didn’t know, then I knew it, but ultimately it hasn’t demonstrated any impact on my life, so it’s just a thing that is. Realizing that I’m autistic was just a moment of, “Oh. Okay, that actually explains a lot of stuff.” It didn’t change who I am as a person or how I view myself. But it very much changes the way I view the people in my life during my childhood.

Now, when I read the disgusting thoughts of the autism warrior mommies who write their memoirs about how sad and tragic their children have made their lives I see myself in the role of that child, rather than as a parent criticizing another parent. I read about Elmo Mom fantasizing about abandoning her child for a better one and wonder if my mother had those same thoughts. Being the consequence of an unintended pregnancy had already put those seeds of doubt in my mind with regards to whether my mom ever regretted having me because of the life she might have had otherwise. It never occurred to me to worry that she might have regretted having me due to me not coming out as advertised. It never once crossed my mind to view my family with suspicion, to think that they might not have been annoyed or disdainful of my behaviors because I was a handful, but because of circumstances that were out of my control. And never in my life have I ever considered that I might have been in danger from the adults who had to care for me. All of this has made me think things about people I love that I don’t want to think. And for that reason, I’ve been unable to write about or think too deeply about these horrible, abusive women who have monetized hating their children.

This post might be super ableist. I can’t tell. It might be unfair of me to opt out of autism activism when other people can’t. That’s a valid criticism. Right now, I’m not even entirely comfortable labeling myself as autistic without some kind of paperwork or certificate to prove it, but I’m unable to separate myself out as an ally, either. I’m interested to hear from those of you who are actually autistic if you’re comfortable sharing your thoughts on self-diagnosis in the comments, whether you’re formally diagnosed or self-diagnosed. It’s a strange experience to be the same person you were yesterday, yet doubt everything about the narrative of your life story today.




*The “T” in LGBTQA+ was removed because I was speaking specifically about sexuality and I don’t know if transgender people have a gaydar equivalent. I excluded the T from the acronym so as not to make assumptions or erase heterosexual transgender people.