Late Intervention Campaign

Autistic adult readers of Asperger Square 8 are invited to join this campaign. Send me your photo and the name of an "intervention" that has helped or might help you, and I will add it to mine. Please send only your own photo, or one you have been given permission to use for this purpose. And yes, it is okay if you are 15 or 16 and think of yourself as an adult. You get to define yourself here.

Many thanks to darling.clandestine for the photos I've used here.

She will never

She will never have friends. She won’t fall in love. She will never be able to live on her own. She won’t go to college. She won’t get a job. She will never fit in with the others. She won’t be able to travel. She’ll never fulfill her potential. She won’t drive a car. She will never be happy. She will never be the daughter you dreamed of.

She can’t even tie her own shoes. She can’t even blow her own nose. She can’t read a map. She can’t catch a ball. She doesn’t know whom she should trust. She can't cross the street. She can’t be allowed to stay home alone.

Some of these things she does not care about. Others she might like to try. Some of them, she will have achieved soon after you swore she would not. More important, know that she hears you. She knows you never believed in her. She's sure there must be something bad about someone who couldn’t do everything on your list. She knows that you told everybody you know about what, in her understanding, you saw as her failures.

She is angry and hurt. She will try to forgive. She will try to believe in herself. She will do her best to continue growing in positive directions. She will always remember those things you have said. From this, she will never recover.

By the book: The denial of difference in Alcoholics Anonymous

1985-1992

The back of the room is safe but the back of the room is forbidden. Isolating means fear and denial. Come to the front. Come to the table. At the table, I cannot function. The faces know. I cannot look. At the first opportunity, I will move to a corner. Lower my head so I don’t see the looks.

The hardest part of it all is staying in the room. Some meetings are harder than others. You never know when the person chairing is going to be of the controlling type. Today, we will go around the room and say how we are powerless or what we are grateful for. Or worse, she will call on people randomly. Going around the room is better because I would know when to leave. Leaving is wrong, but I have no choice. I don’t yet have the tools for staying.

Once in awhile someone will have a talk with me. People have followed me out. What are you afraid of? You are getting ready to drink. But I am not afraid of telling the truth. I am not able to speak.

This had happened in school too. One of the things I did to frustrate my teachers was to say only “I don’t know” when called on to answer a question. They knew this was a lie because I had already discussed the very topic in an essay or chosen it from a standardized test. Sometimes, I might even volunteer the answer, briefly, orally. But when called on, I never knew. It was common knowledge that I lied about these things because I was “shy.” I did not know why my mind went blank or filled with random pictures or graphs. Sometimes, I would try very hard to make a sentence out of it. People would stare back blankly because whatever I said seemed several topics removed from the question.

During my early years in AA, I rarely stayed in the room for an entire meeting. People would try to engage me by asking me to do things. I could not chair a meeting, but I could make coffee. I could not stand up and tell my story to a group, but I could collect the trash and take it out. Eventually, it became clear to me that this was no longer enough.

I went for nearly three years before drifting off.

1999-present

The hardest part of it all was staying in the room. I was older now, 39 as opposed to 25. I understood more about how to stay. This was viewed positively by the few who had known me before. It was framed as “being ready this time,” as being more willing. That was probably true, too, after seven more years of alcoholic drinking. The key for me was that I had acquired the ability to say the word “pass” or even “I will just listen today” when it was my turn to speak. I still found myself with an urgent need to use the restroom or take a walk at some point, but usually I came back.

Conflict arose when the time came to receive my first token, representing one year of sobriety. I tried to refuse. The tradition is to say a few words and I hadn’t yet said anything in any meeting beyond “pass” or “I will just listen today.” But I had bought into the idea so prevalent in AA that somehow displeasing one's sponsor and group is likely to lead to tragedy. I had accepted a lot of beliefs I knew were lacking in logic and reason. I had been told I would surely drink if I did not do this. For months, I had traded aspects of critical thinking for the approval that seemed somehow to play a role in keeping me alive.

When I think about this now, I understand how easily reason can be set aside in favor of anecdotal evidence. I heard the stories over and over: Beth comes to meetings every day, and she has been sober for 10 years. Marie was sober for 10 years, too, but she stopped going to meetings a year ago and now she is drinking again. Rita did the same thing, and now she is dead. There was a seemingly endless supply of such stories. I was pretty sure that there were people who did not go to AA and still were sober, but eventually, I stopped asking questions because these questions, I was told, were a function of denial. Then there were those people who came around all the time and seemed to do everything recommended, but never seemed able to stay sober. There was an explanation for that. They were doing it wrong.

One hears the same sorts of stories about autism causes and treatments. Joe was autistic, but now he's not since starting XYZ. If you question this, it is because your philosophy is flawed. "My child is my evidence." That sort of thing.

I negotiated the token situation with my sponsor. I could use a simple script when accepting the token; “thank you” would be enough. Reluctantly, I agreed, and found myself adding to the script so that when the time came, I had several short sentences to say. This might have been a mistake. People were amazed by the talking I did. Now they were sure I could say things at any time I wanted. I responded by memorizing brief scripts for various popular topics. They were coherent enough, having been written and memorized beforehand, that people started looking to me for advice, even asking me to sponsor them. The problem was that these new situations demanded far more ability to speak extemporaneously than I actually had. I had quickly risen to my level of incompetence.

Demands continued to increase. I was berated by my sponsor for the misbehavior of not going out to dinner after meetings. Apparently I lacked the all important willingness to socialize with groups, which was necessary to the next step of my development. I made many attempts to meet this expectation, becoming more miserable and alienated with each try. I could not understand why these monumental efforts toward conformity were not sufficient to stop the accusations of unwillingness. I came to believe that there was something fundamentally wrong with me, something that would surely lead me back to drinking.

During one argument with my sponsor over this and other crimes of autistic behavior, I stood in the middle of the street, doubled over, crying. “This is too much drama for me,” she said. And she laughed. I didn’t fire her; she fired me, a short while later. Her parting words were about how I had this tendency to see everything in black and white. This was probably the closest I came to drinking, and the best thing that could have happened. I found another sponsor who was flexible enough to accommodate, and even appreciate, my differences, one who did not find amusement in my pain. I still see her from time to time. Neither of us goes to the meetings anymore.

Further reflections

There were things I liked about Alcoholics Anonymous. There was a comforting sameness about the meetings, an orderliness to the steps. Hearing the stories of others who had been in the same kinds of trouble I had reassured me that sobriety was possible. Many people were kind and went out of their way to help others who were suffering. In fact I have never encountered another group of people so willing to sacrifice time and energy for people in need. And there was always coffee.

I never got over my uneasiness with the exhortations to “stop thinking so much” and just do what I was told, just as I never adjusted to social expectations that were entirely outside my understanding and abilities. But I did do (more or less) what I was told, and the fact that I took every step so very literally may have been helpful. I really don’t know.

There was one other thing that, in retrospect, I very much appreciate. Despite the many before-, during-, and after-meeting comparisons (this one’s drinking was far worse than that one’s) and the jockeying for status associated with long term sobriety, not one person ever questioned whether anyone, no matter how young or seemingly unscarred, met the DSM definition for substance dependence. All were considered qualified to know who they were, and with or without benefit of formal diagnosis, entitled to say so without rebuke.

Disclaimer

This post is not meant to discourage anyone who needs help and thinks that AA might be the solution. This is one person’s experience. I am sharing it with the hope that AA groups and members might consider the possibility that, despite the prevailing sarcasm toward people who “think they are different,” and are therefore surely in denial, some of us may truly have different needs which could easily be respected and accommodated.

Curing Autism

Though I made it through childhood without a formal diagnosis, there was never any doubt that something was wrong. I heard about it at home, at school, even from strangers who stared in stores and restaurants, somehow knowing. What I knew about the something, independent of the tellings and looks, was that while being alone was fine, loneliness grew in every attempt to join the others. I could not talk to people, and I did not like them looking at me, waiting.

When I was 18, I found the cure. The cure came in bottles, 12 ounce amber ones and tall clear ones with Russian names. I found a voice, and I thought it was mine. For years I drank nearly every day. I went to parties, nightclubs, and the homes of people I knew and didn’t know. I danced and sang. I talked to people. These were a few of the things I did which did not harm anyone. I could write volumes about the things that did.

I was cured, for a time, of a certain form of communication deficit, and I learned to enjoy, for the first time ever, socializing with others. As far as the third part of the triad, the repetitive, obsessive part, well, not so much. Alcohol made the obsessions much more visible to others. I was not normal, not at all indistinguishable from my peers. Those obsessions, lasting anywhere from months to years, might have been manageable, might have passed for mere “quirks” to the casual observer before my cure, but these became the fuel for numerous conflicts, employment problems, threats of arrest, ludicrous piles of debt and falling from roofs onto wrought iron patio furniture. The details are not ones I care to discuss much here.

Eventually, the cure I had sought became a clear threat to my life. I had to give it up; yet this seemed impossible. I needed a cure for the cure, so I went to Alcoholics Anonymous, where I was told there was none. However, I was guaranteed a “daily reprieve” from alcohol if I became willing to follow a few simple rules. Because I could find no other option, I agreed to do this. Life improved, quickly in some areas, slowly in others.

It should be noted here that the story repeats like this: Seven years of drinking, seven years sobriety, seven more years of drinking. Then on to the current recovery period, now in year eleven.

What I am wanting to say here is twofold. Sometimes the cure is worse than what one is seeking to alleviate. Alcohol allowed more words to flow, but the words were not good ones. They no more represented my true self than my silence had. Likewise, the behaviors of children subjected to barbaric "interventions" at the Judge Rotenberg Center may seem improved to some, but at what cost?

Beyond that, I often wonder, when people seek treatments for “autism” exactly what it is they are hoping to treat. Autism is not one thing. My understanding of how it looks in me includes things like difficulty with spoken language (sometimes very little language is available, sometimes the words don’t match with what I mean to communicate); interests that differ in both type and intensity from most other people I know; repetitive movements and sounds; marked differences in information processing; problems with initiating and switching tasks; mild prosopagnosia; strong aversion to sounds most people don’t even notice; a stiff bouncy walk that sometimes draws comments and stares; general clumsiness; severe problems with sleep (waking as many as 20 times during a night); debilitating fears of things like thunderstorms and ants; unusual postures; inability to use facial expressions consistent with my intent or meaning; significant difficulties with managing time, finances and household upkeep; mild self-injurious behaviors; echolalia, both immediate and delayed; and the need for keeping an animatronic parrot at my side. That just scratches the surface.

How anyone can imagine that one drug, therapy, or other “intervention” might address all of these characteristics (and more!) is something that makes no sense to me. Indeed, it seems that most treatments for “autism” address at best a handful of items from a list far longer than the one provided here. For purposes of promoting particular treatments, “autism” can mean pretty much whatever a parent, therapist, doctor or business decides it means. Much like Humpty Dumpty[1] some people have decided that the word means “just what [they] choose it to mean, neither more, nor less.” Of course it can never mean what I say it means. I lack certain credentials (either autism or the absence of it, depending on whom you ask). Yes, it would be so nice if something made sense for a change.

In a future post, which I hope to deliver promptly, executive functioning skills permitting, I will discuss the AA experience, or at least some small parts of it, from the perspective of a (non-recovering) autistic recovering alcoholic.

[1] Numerous sources have reported that he was cracked.

Blaming Autism

Frustrated by an autistic student who had fallen down, Akron school aide Ingram Myers dragged the young man "50 to 100 feet" by his ankles through the school hallway. This is not the first time Myers has been investigated for harming a student. In 2004, he was accused of striking a high school student, and was subsequently transferred to his current position. He has been placed on paid leave pending investigation of the January 14 incident involving the autistic child.

"I really want to see that this aide is not only removed from the school district but from his place of employment," Powers-Fabian [the student's mother] said. "Something should be done criminally so that they're (sic) something on his record so that he cannot work with this population in a school district."

Who is to blame? According to Kim Stagliano at Age of Autism, well, of course, you know...autism...is to blame. "As the numbers explode," she writes, "expect more horror stories of abuse and neglect." She is certain the solution to such actions is to eliminate autism. Protecting autistic children from harm is as simple as removing the behaviors associated with the disability. Isn't it?

Minority populations have always been vulnerable to abuse by those intolerant of difference. Take away autism (as if that were even remotely possible), take away the behaviors that make a person autistic (problably some annoying person would still fall down), and abusers will easily turn to another target. For the record, I disagree not only with Stagliano's position, but with Ms. Powers-Fabian's assessment as well. It is not enough to protect "this population" from violent acts perpetrated by unethical authority figures. All human beings deserve better.

"Blaming the disability" is no more than "blaming the victim" dressed up in charity model clothing. The issue here isn't autism. The issue is the abuse of power, and how this abuse is supported and enabled by views asserting, however covertly, that some people are less worthy, less valuable than others.

The Important Meeting

Meetings can be important. They can be overwhelming. Meetings can help solidify relationships in the workplace. They can serve as distractions from what some of us see as the "real" job. This is about how I sometimes experience meetings at work.

How the Grinch Tried to Steal Autistic Self-Advocacy

Each autistic person deserved life a lot...
But the Grinch, who lived outside of Reason,
Thought NOT!
The Grinch hated autism, every season
He liked to chelate cats and give dogs HBOT.

He thought all he could with his tiny green head
About how to prove they’d be better off dead
Until it occurred to him how to derail
Every self-advocate, make them all FAIL.
He talked and he talked about bad heavy metals
And fed every child only dandelion petals,
For surely the gluten contained in their snacks
Was causing the tantrums and nasty head whacks.

It wasn’t enough to define a disease
To diagnose those whose behavior displeased.
He had to make progress in shutting up those
Who saw through the lies he was sure they’d expose.

For every last one
who might dare denounce
Judge Rotenburg Center,
On each one he’d pounce.
He’d call them all liars
And Not Like My Child,
He’d scoff at their problems
And say they were “mild.”

He’d call them all ignorant, cruel and bitter,
Mock them on Facebook and flame them on Twitter.
When all were distracted defending themselves
The Grinch would be ready to work with his elves.

For each child who head banged or never did speak
He’d build a new center for shocking those freaks.
In every last schoolhouse, in every last town
He’d build rooms for locking and tying kids down.
In case the adults thought they’d be off the hook,
He’d tell all employers “Don’t bother to look”
At job seekers bringing a parrot along,
People like that have no right to belong.

But the really Big_plan that made the Grinch smile
Was much worse than HBOT, far worse than chelation,
His true goal was more than a little bit vile,
This Grinch, he was hell bent on eradication.

He'd make videos for Autism Speaks
About how the lives of autistics are bleak,
About the great burden we place on the others,
Moms, dads, aunts, uncles and sisters and brothers,
Surely the public would now buy his answer
To autism, so much more awful than cancer.

More money was needed, he hastened to warn
To keep any more of us from being born.
The only thing stopping him from the foul deed
Was that self advocates weren’t as naïve
As clueless professionals claimed in their scorn.

No longer would anyone listen or heed
The derailing tactics, they'd no longer plead
With bigots to understand they had a right
To speak up and take part in everyone’s fight.

From that moment on whenever they heard
"You’re not quite autistic,"
They just said “Absurd!”
The right to protest isn’t based on such stuff
As who can speak well or who seems like a nerd.
It’s more fundamental, this point the Grinch missed:
We’re human. We all have the right to exist.