Pass the acceptance, please

Apparently this Saturday is the beginning of Autism Awareness Month. (It’s also my local library’s spring book sale, but that’s probably not as exciting to you all as it is to me.) Or, better yet, Autism Acceptance Month. Because people are already aware of autism, aren’t they?

People are aware of autism as something so horrible that it’s better to let their child die of measles or be paralyzed by polio than risk the (scientifically dis-proven) vaccine-induced onset of autism. They’re aware of autism as something so horrible that it excuses a parent killing her own child. Does this kind of “awareness” help autistic people function in society, form meaningful relationships, find employment, live rewarding lives?

People are also apparently aware of autism as something that has a particular “look” – hence the often made comments “You (your child) doesn’t look autistic!” (I guess autistic people are supposed to be green??)

Forget about awareness. All it does, as far as I can tell, is make people think they know something when they actually don’t.

You know what I would like? I would like to be able to take my almost-three-year old son anywhere in public and not be glared at, told I shouldn’t be there, or hear muttered unkind comments. I would like to be able to take him to story/craft time at the library and not see him excluded by a particular parent volunteer because she doesn’t understand his behavior.

((Do you know how much it hurts, after a lifetime of being excluded by neurotypical people, to see your son (who is totally sweet and awesome) being excluded before he’s even three years old? It’s easy to say to someone who’s been rejected and excluded by other people, “Well, you’re such a cool person, that’s their loss.” It’s even true, but it’s incomplete. Because when you reject and exclude me, that’s my loss, too. When you reject and exclude my son, that’s his loss. That’s our pain and our anger and our loneliness, every freaking time.))

I shouldn’t have to put a big sign on my kid that says “I have special needs! Be nice!” in order for people to treat him with kindness and respect. Maybe I’m being overly idealistic here, but it would be cool if people could treat him that way just because he’s, you know, a PERSON.

What I want for him is acceptance. Acceptance, understanding, and support. I want people to see his awesome personality AND his differences, his challenges AND his gifts, not one or the other as if they’re incompatible. Because it’s all rolled up in the same human being.

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Sorry, being a cruel and hateful person doesn’t make you mentally ill.

Trigger warning: saneism and hate crimes. Also I use the f-word.

There’s a sentiment that I see and hear a lot, often expressed by liberals who have an unjustifiably optimistic view of humanity, that offends me more than any number of slurs against people with mental disorders. This is the idea that “anyone who could do something like that to another person must be mentally ill.”

“Something like that” could be any number of things. Killing someone. Torturing someone. Being racist or fascist. Today’s example (which actually happened several years ago but just came back into the news because a judge in Florida decided it wasn’t actually a crime) is several prison guards locking a black man with schizophrenia in the shower and running near-boiling water on him for hours until he died. I’m not going to provide a link to any of the articles because it’s that disturbing; Google if you want the grisly details.

So I came across this story last night, and because apparently it wasn’t upsetting enough to read about another hate crime against a mentally ill person being dismissed as not worthy of prosecution, I read the comments. And of course there was that person (there’s always at least one) saying, “Who really has the mental illness in this situation?”

To which I respond, THE PERSON WITH FUCKING SCHIZOPHRENIA.

Let’s get something straight. Mental illness is an actual thing. There are specific symptoms that lead to specific diagnoses. There are detectable brain differences that can be studied. Genetics play a role – often a very significant role.

You don’t just get to decide that anyone who displays behavior you don’t like or don’t understand has a psychiatric condition, any more than you get to decide that anyone who takes a long time in a public bathroom has a colostomy bag. I mean they could, but unless you have actual concrete evidence of that, you probably shouldn’t assume it or assert it as a fact to other people.

This includes, by the way, Antisocial Personality Disorder. Many people are in the habit of casually diagnosing everyone with despicable behavior, or anyone who’s an asshole, as having APD (or “psychopathy” as they’re often not educated enough on the matter to know the current diagnostic term). Nope, sorry. Unless someone has actually been diagnosed with APD by a professional, you don’t get to decide that they have it just because you don’t like or understand their behavior.

The assumption that people are fundamentally good and thus all cruelty must be caused by a psychiatric condition is 1) delusional (though not in a technical diagnostic sense) and 2) saneist. It perpetuates stereotypes about mentally ill people being violent horrible human beings while letting all sane people off the hook for their behavior – even when they commit a hate crime against a person with a diagnosed mental illness. It makes “mental illness” itself a slur.

In reality, there are many cruel and hateful tendencies in human nature. These tendencies are not the same as mental illness. Many people with bipolar disorder, schizophrenia, and the like are very gentle and empathic people. I speak from experience, of which I have plenty because I know a lot of people with these conditions and I am one. While we may have violent outbursts when symptomatic, it’s the exception rather than the rule. It’s not who we are in our day to day lives.

Conversely, there are many people who do NOT have a psychiatric condition, who are bullies in their day to day lives, who are selfish, who like to hurt others or at least aren’t very bothered by it, and who are very susceptible to peer pressure. Did every person who participated in slavery or the Holocaust have an undiagnosed psychiatric condition? Or for that matter, every person in middle school who threw rocks at me or jeered?

I volunteered at downtown shelters. Homeless people with schizophrenia aren’t the ones jumping people, they’re the ones getting jumped. Or boiled to death in showers. It’s usually the person with the mental illness who is bullied and hurt by the normal folks.

But people with psychiatric conditions can also be assholes. We can also be mean, and selfish, and petty, and cruel. Usually this is NOT because of our mental illness. Usually it’s because WE’RE FUCKING HUMAN. Yes, all the nasty stuff you normals do, we crazies can do too. But it’s not because we’re different from you. It’s because we’re the same as you.

Accept it.

Why Johnny Doesn’t Flap: a problematic parody

I came across this book in the children’s section of the library last week. It’s called “Why Johnny Doesn’t Flap: NT is OK!” The authors, Clay and Gail Morton, have a son with autism and are self-described members of the neurodiversity movement.

My first reaction to this book was delight. It’s a pretty clever parody of books that attempt to get neurotypical/abled children to be accepting of those who are different (a worthwhile goal but usually condescending in its execution). It’s refreshing and funny. It takes the point of view of the autistic child, a welcome perspective shift that needs to happen a lot more. Here are a couple snippets so you get the idea:

“Johnny has problems with communication. He will say that a math test was ‘a piece of cake’ when he really means that it was easy.”

“Johnny watches the same television shows that I do, but he never recites the opening credits word for word. In fact, I’m not even sure he has them memorized. He sure picks funny things to focus on, but that’s OK.”

There is also an entertaining “Note for Parents” at the end, which informs the reader that “According to the Centers for Disease Control and Prevention, as many as 67 in 68 children may be neurotypical.”

Despite my giggling, something niggled at me. I wondered if it would be possible to write a parody that similarly shifted perspective, but took the point of view of an individual who (for example) uses an AAC device to communicate and needs assistance to use the bathroom. I got particularly stuck on this line, when the narrator laments his friend’s lack of interest in hydraulic forklifts:

“He might never be a real expert on anything, but he’s a good person, so that’s OK.”

I thought a lot about why this line bothered me and finally determined that it’s because it attempts to subvert the ableist paradigm while still accepting it. There’s an implication that the autistic character’s value is shown by his expertise in a technical subject. Intelligence justifies his divergent neurology. Where does that leave autistic individuals who are intellectually disabled?

There are definitely connections between various forms of neurodivergence and certain strains of intelligence and creativity. This is part of the beauty of neurodiversity – of the wonderfully intricate, fragile human brain in all its variation. At the same time, these connections do not appear in every individual. Not every person with schizophrenia is a math genius. Not every person with autism is a programmer. Not every person with bipolar disorder is an artist.

The individuals who have divergent neurology without associated gifts are part of the pattern in the human race that produces those gifts, produces science, poetry, etc. But that is not the substance of their worth as human beings. For that matter, it’s not the substance of worth even for people who do have those gifts. It took me a while to learn this, because for a long time I thought that my literary abilities justified my mental illness, that my value as a person depended on how smart or gifted I was to balance out my impairment. Once I realized that that wasn’t true – that I have as much value as the Nobel Prize winning novelist, and also as much value as the homeless man who recites his poems in coffee shops, and as much value as the nonverbal intellectually disabled woman who’s never written anything at all, because each of them has the same damn value – I was able to enjoy writing for the first time in years.

But back to the book. I was curious what exactly the authors’ take on neurodiversity was, so I googled and found this interview , in which they are quoted as saying: “Why do people with high-functioning autism have a disorder while non-autistic people are ‘normal?'”

Note the deliberate exclusion of “low-functioning” autistic individuals from arguable “normalcy”.

In my opinion, this is the major issue that the neurodiversity movement needs to tackle right now. There are advocates who say “The neurodiversity paradigm is for everyone, no matter how affected and impaired; it’s for those on disability benefits, it’s for those with aides, it’s for those who communicate by nonverbal means”; and there are others like Clay and Gail Morton who say, “Neurodiversity means that mildly affected individuals should be fully accepted because they don’t really have a disorder.” Those are very, very, VERY different stances.

I have major problems with the second approach. It’s actually deeply ableist (I explained why in this post). It’s exclusionary. It’s also, I think, a teensy bit delusional. (If you really can’t figure out what you have in common with those “low functioning” autistic people, then maybe stop describing yourself as autistic?)

A neurodiversity movement that excludes those who are most impaired by their neurology is just another form of elitist garbage, and I don’t have time for that.

The neurodiversity movement that I embrace, that I want to be reshaped by, that I want to tell others about, is expressed by autistic activists like Amy Sequenzia (who is nonspeaking) and Lydia Brown. Instead of seeking inclusion as neurodivergent people within the dominant, able-bodied, neurotypical paradigm, they simply reject it. They refuse to be defined by it. Anything less than that, no matter how clever or well intentioned it may be, falls short.

How to lose a friend (when you have a child with special needs)

1) Start out with a baby with unexplained delays. Befriend a mom whose baby also has unexplained delays. Talk a lot about your babies and their delays.

2) Live in affordable housing, in an apartment that’s not big enough to put all your stuff away even on those days when you have the energy to try. Make your living space look like a disorganized hospital by lining up oxygen tanks in the entryway and hanging nasal cannulas off chairs.

3) Find ways for your child to be in the hospital a lot; it interferes with scheduling play dates, and also makes your friend feel obligated to care even after the novelty has worn off (like, really? the hospital again?). Ideally, this should start happening right around the time that your friend’s child is outgrowing her delays and needing fewer services. It also helps if you can get a few new, unexpected diagnoses during this period to stress over and talk about in detail.

4) Share hilarious anecdotes, like how you once splashed yourself in the face with your child’s lymph fluid while emptying Jackson-Pratt drains. (Also a great way to avoid making new friends, should you find yourself in a group of moms.)

5) Keep venting about therapists, doctors, DMEs, and your concerns about your child’s development, while your friend has nothing to say in that area because her child is basically typical now and this stuff is no longer a significant part of her life.

6) Try to convince yourself she’s not passive aggressively telling you something when she cancels play dates at the last minute “because she has to do laundry”, or leaves food on your doorstep after you get back from the hospital instead of coming in. Keep texting her to ask how she’s doing and if she wants to get together, even though you’re always the one initiating it. Let your suspicion and resentment simmer quietly.

7) Stop texting her for a while because you are completely overwhelmed with illness, ER visits, pediatrician visits, another sleep study, trying to get your child to tolerate a nebulizer (no really, it’s an octopus!), trying to figure out the whole process of transitioning from early intervention to preschool, and scheduling two different autism evaluations because the people from the first place stopped calling you back and still haven’t given you a date. Notice in some part of your subconscious that she hasn’t commented on any of your medical updates on Facebook, even when your son was in the ER on Christmas Eve.

8) Ask how she’s doing. When she doesn’t respond within ten minutes, ask if she’s ignoring you.

9) Get a lecture about how you haven’t been contacting her either, and how she’s been really busy with buying a house in an upscale neighborhood so her daughter can go to the best preschool.

10) Drawing on months of carefully controlled, slow-simmering resentment, say something sarcastic implying that your life is harder than hers. Be told that you’re a crap friend because all you talk about is your child’s medical issues and she doesn’t want to hear it.

11) Completely explode. Use profanity. Be as insulting and mean as you possibly can. It’ll feel good for about 10 seconds. Maybe a full minute. Make sure there’s no possible way she’ll ever want to hear from you again.

12) Take a benzo so you can settle the adrenalin enough to get some sleep, because you’re touring the special needs preschool in the morning. Feel guilty and analyze the reasons why you’re a horrible person.

13) Realize that you should have let the friendship die quietly months ago, and the main reason you didn’t was because it was your only shot at play dates for your socially challenged son.

14) Decide to do better next time.

Trust me, this works really well. I think it might actually be impossible to keep a friend if you faithfully follow all these steps. Good luck!