life lessons from a "difficult child"

In preschool, I ran circles around my classmates.

“Here's the stack of novels she's read today.” The teachers would indicate a large stack of books in kindergarten in first grade to my mother. “Here's the amount of classwork she's done.” A stack of uncompleted worksheets.

I thought the psychiatrist's questions were rather pointless. His condescending manner struck me even as a young child. I couldn't express it in words, so I bit and threw anything I could at him. By the first grade he had given me diagnoses of Oppositional Defiant Disorder, ADHD, and anxiety.

Age 14: I am diagnosed as autistic alongside those.

Age 16: depression.

Throughout: Social skills work. Therapy. Psychiatrists. Medications.

My life has been a cocktail of medications prescribed as diagnoses tacked on each other. My body and brain rejected many of them. Some altered my mood dramatically; others made me fall asleep in class even when I didn't want to. A combination of them gave me seizures in college. I tried to bail from them cold turkey and wound up with withdrawal symptoms for six months. I have no idea what the current ones – a much nicer combination than the last combination – have done to my brain chemistry; I can't function without one of them at this point.

I was gone up the tree when someone stops looking. I was screaming at people who touched me. I was shredding paper and trashing my room and causing a ruckus. I had broken another electronic item; this time, it's by accident, but last time, I threw it.

I never had access to enough language to express my feelings, my past trauma that I didn't know had happened yet, my pent up rage at the turmoil my life constantly seemed to be in. I tried to put words to feelings that I didn't know about, to use words to explain, but it failed. The same words that were my refuge on paper, working on novels and typing out poetry and stories, failed me with trying to express my deepest feelings.

Everything is a pathology, something that needs prescribing for, because we are “too difficult” otherwise. We are to be behaviorally-modified and we are to be silenced one way or another. My life has been through this framework. People wondered how to “fix” me. I was “that kid,” the weird one who moved funny and talked funny and could only talk about cats and gerbils and books, who seemed either lost in their head or too loud and frenetic for this world, who ran off to investigate things without a moment's care of whether I lost track of who I was with.

And yet I was never “from hell.” No one with a disability is from hell, Alison M. Thompson, author of the Boy From Hell: Life With a Child with ADHD. You've gotten that book republished. Congrats, I guess, on implying that we are from an otherworldly dimension of fire and punishment. This is how people see us: punishments, burdens, deadweights.

What about us?

We read your stories and hear your words, no matter how lost in our heads we seem. We are not your experiments in how quiet and orderly you can make us. We live and experience trauma from the way people treat us – we should have your support of all people's to back us up against a world that thinks us a waste of space, not contributing to the pain and trauma. We live your words and your punishments, reared to feel defective and that we'll be only considered almost people if we pass by your standards.

I never learned to shut up and be still. I never learned how to limit the amount of space I take up. I never learned to modulate and self regulate for others' discomfort with my disabilities. I never will. It breaks my heart that people live with the exhaustion of self-regulating into silence or compliance. It breaks my heart that people are learning the ways they supposedly don't matter from the world and all the ways they move and communicate are supposedly wrong.

I work for a world where it is at least mostly safe to be disabled, visibly or not, anywhere, anytime, and no matter who you're with. It is exhausting and painful and sometimes triggering, and sometimes rewarding. I would do it without any of the rewards. It is important enough to me that I lose sleep on how to best benefit the disability community.

Because we are not disposable, or punishments, or wrong for existing. 

--

Note: I used she pronouns as a child

The Spread of Compliance Training

(also published on my Medium account)

Recently, the New York Times put out an article under its health section titled, “Early Behavior Therapy Found to Aid Children with A.D.H.D.” Here is a choice quote from the article:

Behavior modification for A.D.H.D. is based on a fairly simple system of rewards and consequences. Parents reward the good or cooperative acts they see; subtle things, like paying attention for a few moments, can earn a pat on the back or a “good boy.” Completing homework without complaint might earn time on a smartphone. Parents withhold privileges, like playtime or video games, or enforce a “time out” in response to defiance and other misbehavior.

And they learn to ignore irritating but harmless bids to win attention, like making weird noises, tapping or acting like a baby.

                […]

The analysis did not account for the psychological cost to parents — in terms of a child’s tantrums, slammed doors and hurled tableware — of carrying out behavioral techniques.

If this sounds a lot like what is used on autistic children to extinguish stimming and reinforce “positive behaviors” and discourage “negative behaviors…” that’s because it is. What they are discussing is fundamentally Applied Behavioral Analysis (ABA). But wait, you say. Isn’t ABA good for Autistic children? Isn’t it evidence-based?

Yes, ABA is evidence-based in that it does what it’s designed to do – extinguish or replace certain behaviors. But it’s kind of like Jurassic Park, except no one gets eaten by dinosaurs, because people were so intense and focused on what they could do that no one thought – should we do it? B.F. Skinner and Ivar Lovaas would be thrilled that states are mandating private insurers pay for ABA for autistic children.

And that more children are falling under its scope. ADHD is often thought of as a “cousin” to autism by many – and with that comes the pathologization and attempts to erase all unwanted behaviors.

Let’s break this down further:

“And they learn to ignore irritating but harmless bids to win attention, like making weird noises, tapping or acting like a baby.”

I don’t know, I mostly made cat noises because I liked making cat noises. If they are harmless, why must they be extinguished? If they’re harmless, why are they pathologized? Irritating. I forgot that part. They’re “irritating,” and thus are seen as something to eradicate. Couple onto this the fact that most humans engage in “attention-seeking behaviors,” to be seen, to be heard. And adding a third objection to this, the “mental age” trope of “acting like a baby” is never an appropriate way to describe someone with a disability – in fact, I’d go further and object to anyone being told they’re acting like a baby. It is a complete invalidation.

“The analysis did not account for the psychological cost to parents — in terms of a child’s tantrums, slammed doors and hurled tableware — of carrying out behavioral techniques.”

And here we see the age-old “cost to parents” trope. What does it cost parents? What does it do to parents? My questions are: 

·         What does it do to a child to be treated like they are in a dog obedience training course?

·         What does it do to a child to only receive affection conditionally?

·         What does it do to a child to only have access to certain things if they are obedient, quiet, and have perfect behaviors?

·         Will it improve access to actual life skills that aren’t “shut up and stay still” (which are not life skills)?

I’m Autistic too, but I wasn’t diagnosed with that until I was 14. My primary diagnosis until age 14 was ADHD, which I’m still medicated for.  And before you ask – yeah, I was that kid. The one with a behavior chart that my teachers had to sign off on and the other students laughed at because of it. The one who couldn’t sit still in class, and the one who couldn’t pay attention and the one who blurted out things and tapped and meowed at people.

  

In the same way that autistic children are routinely forced to stop flapping, rocking, spinning, and making noise, children with ADHD are now going to go through that as well. Where does it end? It is not okay to do to autistic children, and it is not okay to do to children with ADHD, and it is not okay to do to anyone. And where does it end? With the kids people just think are “annoying” and “loud” but don’t have any sort of diagnosis? It was never okay to do to us, but when and where will you help make it end?

***

Articles on ABA

·         Quiet Hands: https://juststimming.wordpress.com/2011/10/05/quiet-hands/

·         Have Some ABA, or Else: http://autismwomensnetwork.org/have-some-aba-or-else/

·         ABA: https://unstrangemind.wordpress.com/2014/10/07/aba/

·         On Functioning and “Functioning”: http://autisticacademic.com/2015/06/02/on-functioning-and-functioning/

·         Why I Left ABA: https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/

·         Why I Oppose ABA as a Method of Instruction: http://realsocialskills.org/post/110819268573/why-i-oppose-aba-as-a-method-of-instruction

·         I’m sorry but that’s not earning your token: http://ink-and-daggers.tumblr.com/post/112076858794/im-sorry-but-thats-not-earning-your-token

·         Tackling That Troublesome Issue of ABA and Ethics: https://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics/

·         A further Masterpost of ABA posts: http://neurowonderful.tumblr.com/post/135286731936/2015-autism-aba-resource-masterpost