Is It Ableism? Part 5: Is "Overcoming" Worth It?

Links to previous installments of this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability 

Part 4: Internalized Ableism

In Part 1 of this series, I talked about being annoyed that my dad praised me for "overcoming" autism, that it felt like a backhand compliment. In Part 4, I discussed having to spend many years working rigorously to rein in things like meltdowns and inappropriate jokes. In the eyes of my dad-- and likely many others-- this is something I should be proud of, and I'm not sure how to respond to that.

Don't get me wrong-- I'm glad that these days I get along better with people and that my meltdowns are few and far between. But, as I've said, to reach this point I had to work rigorously (and in the case of the meltdowns, also take heavy doses of SSRIs). So many times when I failed to do what was expected of me, people often responded with extreme and judgmental reactions. The message I got in the aftermath was always the same: that I should accept even the most extreme reactions as reasonable and that I didn't try hard enough. Often, my parents would reprimand me for being "immature" and "inappropriate", saying, "You have to learn how to behave appropriately." On more than one occasion, Dad said, "This reflects on us as parents." 

Well, shit. After a while, of course your behavior is going to change, at least somewhat. And why not? I think one can browbeat a kid into doing just about anything*. It makes me think of left-handed people who eventually learned to write with their right hand, not because they did so on their own, but because superstitious teachers and parents forced them to.

And that's the problem. Just as left-handedness was once seen as "abnormal" at best and "Satanic" at worst, up until very, very recently, attitudes and behaviors of autistic people like me were seen as superficial attributes. Sometimes, they were read as symptoms of "bad parenting". Rarely did people speculate that these were signs of a brain that was hardwired differently. 

Right now, I can hear people asking, "Oh, well if you're interacting better with people today, isn't it worth it?" No. The end doesn't justify the means. Although I don't have PTSD, my therapist says I have a couple of signs of it. One of these signs is the occasional nightmare. Often, this is in the form of a vivid dream in which I am a teenager and in a screaming fight with my parents. The are two versions of this dream: 1) That I am fighting with my mother who is telling me I don't act and dress feminine enough and 2) We are at a gathering somewhere, and my parents are reprimanding me about something unforgivably inappropriate that I did. I am screaming and crying desperately, trying to explain things to them and they won't listen. Both dreams are so intense that sometimes I even wake up screaming.

Another horrible dream I have involves close friends excluding me-- sometimes deliberately and sometimes because they don't seem to notice me. The latter scenario-- the feeling of invisibility, that nobody would notice if I dropped off the face of the Earth-- is something that followed me throughout my childhood, teenage years, and occasionally in adulthood. I actually had this dream a couple nights ago. In the dream, I was celebrating my birthday with a bunch of people at some weird indoor water park/escape room. In one of the challenges, we had to pair up. There was an odd number of people, and I was the only one who did not have a partner. Nobody even seemed to notice that I was left out. I said something like, "Great, now I can't even have a birthday without something like this happening to me." Angry that nobody even thought of me at my own party, I turned to my guests and shouted, "Fuck all of you and the horse you rode in on!"** before storming out of the building. 

So the short answer is, no, it's not worth it. It would've been better if I'd been met with more understanding and patience growing up, as I would if I were a 21st century kid instead of a 1980s and 1990s kid. I would've received guidance but not been under constant pressure to "change". Neurotypicals and autistic people communicate very differently, and they need to meet each other halfway. The onus can't be entirely on the autistic person. It causes anxiety, stress and, for many people, PTSD (or in my case, symptoms of it). For neurotypicals to do their part, they should be expected to make some accommodations, just as able-bodied business owners should be expected to provide wheelchair ramps for wheelchair users.***

What does accommodation look like? Stay tuned.

*Then again, it depends on the disability, the extent of which is just an accident of nature, isn't it?

**I realize that this phrase makes no sense in the context of my dream. But dreams often aren't logical.

***Truthfully, not enough businesses have this accommodation. At least, though, government-funded spaces such as schools and libraries in the United States are legally required to provide this.

Is It Ableism? Part 4: Internalized Ableism

If you've just joined me, don't forget the read the first three posts in my Is It Ableism? series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

In Part 3 of my Is It Ableism? series, I ended by saying I wouldn't want to be "cured" of autism because it makes me who I am. Prosopagnosia is a different story; it isn't something that I feel makes me who I am, but just something that gets in the way. I also said that I could imagine people accusing me of internalized ableism for making this statement. Again, we need to make sure we have a discussion about this issue rather than being so quick to jump to conclusions. 

So what is internalized ableism? Let's ask Wikipedia. Internalized ableism is a form of internalized oppression, which occurs when "one group perceives an inequality of value relative to another group, and desires to be like the more highly-valued group." Obviously, this can occur at the individual level too. I reject the idea that my desire to not have prosopagnosia is a form of internalized ableism. Even though people generally are understanding when I tell them it will take me a while to learn their faces, I would prefer that this wasn't the case, that it didn't take so much effort. But that doesn't mean I think that people without prosopagnosia are "better" than me. If I did, then, yes, that would be a form of internalized ableism. That doesn't mean I haven't suffered from internalized ableism in other circumstances. In fact, I think I have, in the form of a book I wrote several years ago.

In the summer of 2010, I began writing a book for parents of kids with Asperger's Syndrome*. I began seeking an agent for the book in 2013, but it fell to the wayside as I had just been fired from a job in Maine, where I moved to after leaving Brooklyn. I had to move back in with my parents in Pennsylvania, continuing the never-ending saga of trying to find and keep a job. When I finally got on my feet again in Boston, I decided not to pursue publication: Many of the ideas that I expressed in the book, such as that we need to stop trying to "fix" kids with Asperger's Syndrome, were novel at the time that I wrote the book but are now at long last a growing part of mainstream discourse. Much of what I said has been expressed by lots of autistic people in books, blogs, and on YouTube. My book is outdated, and I am now prioritizing writing fiction. Any of my personal thoughts about autism go into this blog, of course, and possibly in some "officially" published articles in the future.

I still stand by most of what I expressed in my book, but there are other things I now realize are cringeworthy. In the opening chapter, I proudly declared that I probably would not meet the diagnostic criteria for autism if I were tested as an adult. This statement was shortsighted, ignorant, and, yes, arguably reflective of internalized ableism. I made this statement based on something that I once read about how some autistic people, upon reaching adulthood, present in ways that are subclinical. 

I realize now that part of the reason that some people don't seem to meet the diagnostic criteria in adulthood is because there are still many psychologists who have a narrow-minded view of what autism looks like, especially in women. I've heard too many women complain that they were not diagnosed because they fail to meet certain stereotypes. They are told things like, "You're too creative to be autistic" or "You're too outgoing to be autistic." In my mind, that would be just as ignorant as telling someone, "You can't have Tourette Syndrome because you never swear**."

Another reason is that lots of autistic people-- again, mostly women-- have learned to "mask"-- suppress their natural autistic tendencies in the name of being accepted and, more importantly, to avoid interpersonal trauma. But guess what? Many of these people suffer trauma anyway, often in the form of PTSD as a result of decades of exhaustive masking. 

Maybe my autism is less obvious now than it was twenty-ish years ago, but that isn't something I should boast about. I realize that part of it has to do with what autistic people stereotypically look like and another part has to do with the fact that I had to work hard to get to where I am now in terms of social skills. I don't know how much of this has to do with masking-- which I was never good at anyway-- and how much of it has to do with natural neurobiological changes. The latter I deserve no credit for because people are made the way they are made. I had a hard time making eye contact with unfamiliar adults when I was a kid, but that changed around adolescence. For me, it was a stage that I simply outgrew***. My guess was that there was simply a natural, neurobiological change that occurred. 

On the other hand, there are other things that I had to work rigorously to curb, such as my tendency to to make inappropriate jokes. I still make them, but these days I am better at choosing my audience for them. I was one of those autistic kids who had no "filter", and I had to work hard to "install" it. Same with my tendency for meltdowns. The meltdowns are largely under control due to the intervention of SSRIs and rigorous self-training; when they do happen, it's generally only when I'm alone or around my family, where I am more likely let my guard down (that, and the fact that since they've known me for so long they often accidentally reopen old wounds, as illustrated in the first post in the series). 

So what does this have to do with internalized ableism? It has everything to do with it! Over the years-- and even still today-- if I occasionally don't rein myself in with a joke or a meltdown, I get unbelievably angry at myself, holding myself to neurotypical standards. I feel not that I made a mistake, but that I have done something horrible, that I have failed in some egregious, unforgivable way, and that any harsh backlash I get from other people for it is well-deserved rather than the result of lack of understanding on their part. Just to illustrate how ludicrous this is, let me give you an analogy with a physical disability: A wheelchair user tries to walk up the stairs into a building but keeps falling down. Instead of accepting that she needs a wheelchair, she tells herself, "What's wrong with you? Everyone else can get into the building, so why can't you?" Perhaps she has said this to herself after decades of hearing things like, "You need to learn to walk," "Do you see other people your age stumbling on the stairs?", "You're not trying", and "You refuse to learn to walk!"

As my therapist has repeatedly told me, I have been well-trained. Growing up and well into my twenties, my well-meaning but ignorant (again, in the "I don't understand astrophysics" way, not the Donald Trump way) parents repeatedly said similar things as in my wheelchair user example, such as, "You're not trying," "You need to learn to...", "You refuse to learn...", "You need to change," and so forth. After learning about the autism spectrum in 2002 and finally having a logical explanation for, well, everything in my life, I still managed to internalize the feedback and input and got from my parents and others. For many years I saw my autism as something to overcome rather than something to accept and expect understanding and accommodation for. As illustrated in the first blog post, my dad still has the mentality that autism is something to "overcome."

But even with "overcoming" vs. "acceptance", there is a lot of gray area, just like everything else I've written about so far in this series. Stay tuned.

*This was the term I used for myself back then. These days I waffle between "Asperger's Syndrome" and autism and feel ambivalent towards both terms. But that's another contentious discussion for another day.

**This particular manifestation is called coprolalia, and it occurs only in a small minority of people with Tourette Syndrome. Unfortunately, it is the most prevailing stereotype that people associate with the condition.

***To be clear, I use the term "outgrew" because my transition into making eye contact happened naturally, not because other people forced me to or because I forced myself to. I realize that for many people eye contact will be difficult or impossible for them for their entire lives, and nobody should force them to do it.