Last night, I fell asleep with a mild fever. My life chased me into my dreams.
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.
I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.
The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.
I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)
I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,
1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.
2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.
3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”
4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.
There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.
So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.
[This is a long overdue repost from my old blog. It is both satire and very serious. It is satire in that it is very closely modeled on actual articles I see frequently online, and it borrows much of the tone and phrasing of those articles. It is serious in that I very much hope it will make the people who write, read, and share those articles think a little more deeply about what it feels like to be one of the people that those articles are about. It is also serious in that it is legitimate and honest advice for autistic people who find the actions of non-autistic people stressful and exhausting– as most of us do at times. We, as much as anyone else, deserve to have that stress and frustration openly acknowledged. But I also hope that by turning the spotlight back on the majority, I can make them a little more aware that even their gentlest and most loving advice can feel very uncomfortable to those being singled out as the cause of that frustration.]
Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly.
Challenging behaviors in adults include insistence that others make eye contact or physical contact with them frequently, difficulty understanding non-speech communication beyond certain stereotyped facial expressions, difficulty tolerating stimming and echolalia, narrow perceptions of what constitutes “learning,” “empathy,” and “age-appropriate behavior,” inability to recognize the sensory needs of others, and obsession with social rituals.
How to positively address challenging behaviors in your friends and family members:
1) Gently remind them that their ways of communicating, learning, succeeding, and socializing are not the only ones.
2) Regularly let them know (preferably in carefully chosen verbal or written words—remember, they respond best to “polite” requests) when their behaviors are impeding your sensory processing, communication, de-stressing, executive functioning, and other important aspects of your life.
3) Be willing to repeat this information for them as needed. Remember, very few neurotypicals have the precise memories many of us take for granted.
4) Be patient and understanding. It can be hard for neurotypicals to grasp the importance of special interests, the joys of sensory play, or the irrelevance of their social games and hierarchies.
5) Remember to love your neurotypicals, and focus on their good points. At the same time, practice self-care. While your loved ones never mean to be a burden, dealing with them alone for long periods of time can be exhausting and stressful. Remember to take time for yourself, be firm about your own needs, and recruit a good support network to help you manage the challenges that neurotypicals bring into your life.
This isn’t what I usually talk about in this blog, but it needs to be said.
There’s something wrong here. We’ve gotten away from the main point.
This happens over and over again. A member of a minority/disenfranchised/marginalized group gets shot. Or arrested. Or harassed. Or refused medical treatment. Often, severe damage is done to them. All too often, it ends in their death. It is, fundamentally and above all else, a tragedy.
Members of that group– black, or disabled, or Muslim, or LGBT, or female– write about it. They and their allies express pain, fear, bitterness, anger, sarcasm, snark, and resignation. They say “not again!” and “yeah, but what can you expect?” They’ve seen it too many times, and still it cuts too deeply every time.
Some people use hyperbole. Some people draw comparisons or give examples that are not accurate. People write things in emotional moments and don’t fact-check them. And debates begin. Generally among people who don’t belong to the group in question.
Was it legal? Did it make sense? Can’t you see why Zimmerman followed Martin, why Ashley X’s parents wanted to keep her small and easy to care for, why the cop misunderstood the person having a panic attack to be dangerous? People give counter-examples and statistics. They make excuses. The victim made mistakes that contributed to their fate. People point out cases where a straight white christian male had the same thing happen to them. There is a great deal of “yes, but” and “if only” and “this wasn’t actually about race/gender/disability” and “it could have happened to anyone, you know.”
And we get away from the main point, which is that a tragedy has occurred, and that tragedies of that nature disproportionately affect certain groups of people. Someone is DEAD… maybe because of a specific misunderstanding or prejudice or systemic injustice, and maybe simply because they made a mistake, or lost their temper, or were hard for someone else to deal with.
Here is what I know about the effect the Martin/Zimmerman case has had on my black friends. It has made them sad. It has made them angry. But most of all, it has reinforced their understanding that they have reason to live in fear.
Ultimately, it doesn’t make a difference that Zimmerman’s attorney never mentioned “stand your ground” or that “not guilty” isn’t actually the same thing as being told you made the right decision. It isn’t about whether Trayvon Martin (or Henry Louis Gates or Christopher Beatty) should have acted differently, or whether we can understand why Zimmerman did what he did.
It’s about being a member of a group of people who live with the constant knowledge that a bad day or a bad decision may someday cost them their life.
I am a small, white, not-visibly-disabled, educated, cis-woman currently dating a man. If I am in a bad temper and glare at a stranger…
…if I have a panic attack and scream something strange…
…or run away from a situation…
…if I show affection to the person I love in public…
…if I accidentally leave a store without paying for something…
…if I space out and wander onto someone else’s property…
…if I get drunk and act rude or stupid or even do something truly obnoxious like using someone’s yard as a bathroom…
…if I loiter outside a building out of boredom or while waiting for a friend…
…if I make a bad choice about where to hang out or who to talk to or look at or even if I insult someone or flip them off…
…if I happen to be in a bad mood when a cop pulls me over for speeding and I am slightly surly with him or her…
That mistake I make is unlikely to escalate to physical conflict. It is unlikely to end in my arrest, and even less likely to end in my death.
This is not true for many other people, particularly those who belong to an easily identifiable minority group. It is not true for the man I love. It will not be true for two beautiful girls I babysit when they grow up. It may not be true for any of the children I babysit when they grow up.
And that is what goes through the mind of black people when they hear that Zimmerman was found not guilty. “If I am careless… if I make a mistake… if I have a bad day… if I scare someone by accident or by how I look or because I’m not paying attention or because I get pissed off like any other human being… I may be killed for it. And the public will not mourn my passing. My killer may not even be held accountable for my death. Instead, people will bicker over whether or not my death was due to racism or to my own momentary stupidity. And either way, I will be dead.”
Can you imagine what having that thought-bubble hanging over your head every day can do to a person? Can you understand the bitterness, the despair, the dread, the psychological torture of living with those thoughts? The weight of having to constantly walk a straight and narrow line in the desperate hopes that it will buy you safety? The pain of knowing that your best efforts– to be ever polite and nonthreatening– may not be enough? The anger of feeling constantly watched, of never getting to simply relax in public and be your own unguarded self because you know that your actions reflect not only on you but on everyone else who looks like you or shares your demographic label? The fury and anguish of knowing that no matter how hard you try, some people will always believe the worst of you simply because of who you were born as, and worst of all, you probably won’t even know who those people are until it’s too late?
So don’t argue with me over the legal details of the case. I’m happy to be corrected about errors I make and misconceptions I have, but nothing changes the fact that this incident gave Black mothers in America one more reason to fear that their sons will not come home some night. And there is NO appropriate response to that other than to grieve.