Thursday, April 28, 2016

An Advocate Asks for Acceptance in Autism Research

Doctor Office 1
Photo © Subconsci Productions
[image: Instruments on the wall of a doctor's exam room.]
TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, Kate talks about her experience trying to participate in a TMS research study, how distressing the entire scenario was for her because of the way she was treated, and how autism researchers need to better understand and accommodate autistic people if they want more autistic participants in their studies.

by Kate

I have figured it out, and I kind of feel like a genius.

I have figured it out, and it is this:

Awareness is people talking to you.
Acceptance is people respecting you.

Awareness is that high-pitched, baby voice.
Acceptance is speaking in a normal tone.

Awareness is being invited to the table.
Acceptance is making sure that you can reach everything on it.

Awareness is acknowledging that you have autism.
Acceptance is acknowledging that you are autistic, and that that fact alone makes you more knowledgeable about autism than any non-autistic person.

Awareness is doing science.
Acceptance is doing good, solid science, science that will be able to be replicated and proven and published, science that genuinely helps people, science that has implications for the future, science that is not just good in itself, but is doing good.

If you want to conduct a research study, you need to make sure that you are not just aware of autism, because being aware is not enough. You need to accept autism, and you need to respect the study participants as capable adults.

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This is my response to learning about John Robison’s new book about being a TMS research subject, “Switched On.” It is my story of how I tried to be part of a TMS research study at the same hospital -- but withdrew, because the researchers did not even know what acceptance or respect of autistic people was.

I hope my experience makes those who have read his new book or heard of the TMS study consider: how reliable is autism research, given that researchers often don't understand or know how to accommodate autistic participants?

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They wanted me to pee in a cup.

I wasn’t pregnant.

This is my primary memory of my experience, or non-experience, as it turned out to be, with TMS last summer.

They wanted me to pee in a cup.

They said that they had to make sure that I wasn’t pregnant.

There was absolutely no way that I could be pregnant.

They accepted the fact that I was a woman without checking my bodily parts, but they refused to accept the fact that I was not pregnant without checking.

Without me peeing in a cup.

A cup which they handed me in front of the male research assistant, as they cheerily pointed me towards the bathroom across the hall.

I cannot help but wonder if John Robison would have had such a positive experience with TMS if they had started off by asking him to pee in a cup to prove that he was not pregnant. Well, that is silly, you say, there is no way that he could be pregnant. He’s a male.

But did they check? No. They accepted his telling them that he had male bodily parts. Why, then, could they not accept me when I told them in no uncertain terms that there was absolutely, positively no way I could be pregnant? Why did they have this double standard in the study? Gender, after all, is a purely social construct. Just because someone looks like a man does not mean that he could not be pregnant. Just because someone looks like a woman does not mean that there is a slight chance that she is.

The tiny plastic cup I held represented everything wrong with the study. They were not respecting me, but I did not know how to speak up.

I felt humiliated. More humiliated than I have felt in a long, long time. I burned with shame and embarrassment, and also, quite frankly, confusion. Which is probably also something you are feeling right now, so let me start at the beginning.

I saw a study posted in a local autism listserv. It paid $50 a visit. I like money and I don’t mind doing research, so I called them up, answered some questions and made an appointment. Although I am not certain it was the same exact people who did John Robison’s study, I believe it is the same program.

I drove into the city, which I really hate doing; I got quite lost -- but I showed up, and I endured over two hours of horrible testing, the standard WASC and intelligence tests that determine, I don’t know ... how autistic you are? I didn’t know why they needed me to do the autism testing when I had handed over my official diagnosis paperwork, less than ten years old, stating plainly that I had an autism spectrum disorder.

The WASC questions were silly. They made me feel stupid. The testers talked to me like I was a little kid, which I am not. Although it wouldn’t have excused their behavior if I wasn’t: I was clean, well-dressed, and expected to be treated as the professional I am.

But I wasn’t treated professionally, and this hurt me. I also clearly knew more about autism than the researchers did. I was more than a little bit insulted to be evaluated for autism by people who were clearly less informed about autism than I am, using tests designed for little kids.

One test had me look at pictures of several faces, and say if I thought the person was trustworthy or not. The pictures were from the 1970s (I checked) and they were all of white men. I told the tester that I did not know any of these men so how could I possibly know if they were trustworthy -- and anyway, of all racial and ethnic groups, white men have proven to me to be the very least trustworthy, so I didn’t trust any of them. But I still was asked to flip through every one of the fifty pictures, and say, ‘no, not trustworthy,’ because I didn’t know them. This was absurd.

I also had to tell a story from a picture book. It was one of those very imaginative, dreamy-landscape kinds of books, which I dislike. I am not a visual person at all, and told them so. I thought the whole exercise was ridiculous.

In the last test, a woman laid out a variety of small objects, and she told a story which involved anthropomorphizing them. I was exhausted by this point, plus I found the exercise silly, and I told her so. I said that, frankly, I knew the point of the test was to see if autistic people had imagination. I have plenty of imagination, and you have only to look at the Internet to see autistic people demonstrating their incredibly wonderful, vivid imaginations. However, at this time, I could not bring myself to tell some silly little story. I was irritated and tired, and had had enough.

Then they took some blood. They didn’t explain why, but I give blood really easily so I didn’t mind.

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I thought of the $50.

I thought of how they weren’t really able to explain to me how this research, which apparently hadn’t even begun yet, would be able to help people. They were quite certain that none of their funding came from anything associated with Autism Speaks, so that was good.

But then ... then they asked me to pee in a cup.

Seriously.

I’m fairly certain that peeing in a cup is easier for males regardless, but as a female with really crappy fine-motor skills, I’ve never yet been able to pee in a cup without getting said pee all over myself, my hands, and my clothing.

I became even more frustrated. Why would they trust my answers on any of the tests, but not trust me when I said that I was not pregnant? Also, why would a pregnancy test do me any good then? The magnet part wouldn’t happen for several weeks. If it was the magnet part they were concerned about, then why the pregnancy test now?

If they could not even answer my simple questions, did they really have the ability to design a good study? How could I be sure that they had my best interests in mind, when they did not even respect me enough to take my word for it that I was not pregnant?

So I left. I was exhausted, and I had a splitting headache, which was ironic -- they had said that one of the side effects of the TMS was a headache, but now I wondered if people just got a headache from that horrific sensory environment and those terribly patronizing people?

I somehow managed to drive home. I thought and I thought and I thought, and then I wrote them an email (which I sadly can no longer find) that explained to them that I could not continue with the study, as I did not believe it had any merit. I believe that any study for autistics should at least have a net neutral effect on its participants, and this study had already had a net negative outcome for me.

I would also like to point out now that I had absolutely no idea what TMS was when I signed up for the study. I was after an easy $150, the promised sum after three visits. As I wrote in an email shortly afterwards, “the purpose of the study is to get an easier way to diagnose autism by looking at brain patterns.” This is not true at all, but the fact that I, a person with a master’s degree and years of experience in the field of disability studies, could not understand what the study was about, makes me think that the people conducting it were doing a very, very poor job of explaining to people what exactly the study is about. I certainly would not have signed up for it in the first place had I known that the real purpose was to change my brain because, despite the difficulties that it gives me, I rather like my brain. It has taken me years to get here, but I enjoy being myself.

As stated above, I no longer have the email in which I explained my reasons for declining further participation in the study, but I do have one in which I explained to some autistic friends what happened, and urged them not to take part in the study. It reads in part, “[The researcher] wanted to know what made me sad, worried, angry, etc, and then how I felt when I felt those things. WTF? I felt sad. She narrated a story about two monkeys which looked horrifically like the caricatures of people of color from the early 1900s, and she named them monkeys, but I named Figure A and Figure B when I told the story back to her because they in no way shape or form resembled monkeys. She asked me what I was reading. I said a memoir of the Armenian genocide. She said she liked happy books, told me what she was reading. I did not give a single flying fuck what she was reading.”

John Robison said in an interview with this website that the benefits to TMS for him were great, that things are brighter now, that he feels things he did not feel before. Did the researcher think I was uncaring when I could not bring myself to show interest in what she was reading? Do “normal” people care what strangers are reading? Does the “normal” brain somehow have a better capacity to tolerate the stupidity and ignorance I encountered at the TMS testing site? Would a “normal” brain not be angry when, after I corrected the testers for using the words ‘person with autism’ (instead of ‘autistic’) one too many times, the tester ablesplained back at me why exactly their wording was better?

I feel things intensely, very intensely. I weep at global warming, wake up screaming from nightmares about apocalypses, love hard and hug hard and live hard every day. I am doing what I can, the best I can, every day -- and interacting with people such as those doing the TMS study does not help me to be the best I can. More than six months later, I still burn with shame and embarrassment when I think about my afternoon at the hospital, and the moment when they handed me that little plastic cup.

I wasn’t pregnant. There was no way I could be.

Yet they still made me pee in a cup.

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I haven’t read Robison’s book, and I don’t plan to; not out of malice, but because it is not a subject that interests me. I do not know him, but I have close friends who trust and like him, and I would like to make clear that I do not have anything against him and I am certain that he is a very nice person. I have read numerous interviews with him about the study process, and they confuse me, because our experiences are so very, very different.

I simply wanted to offer here a different perspective on the TMS testing process, and to demonstrate that his experience was likely a singular one. His results may or may not be able to be replicated. Maybe he did not meet the same researchers I did. Maybe they treated him with more respect, like a partner, not a lab monkey. In any case, I’m certain that he did not at any point in the visit have to pee in a cup. And because the pregnancy test was so very, very ill-thought-out and ridiculous, it really makes me wonder how they could possibly be doing such a good job at it, or designing a good study at all, when they could not figure out, as I could easily, that there was no point in me having a pregnancy test.