Diagnosed, for science!

For the third time I went through an autism diagnosis process today, all in the interests of science. They used an approach called the Autism Diagnostic Observation Schedule (ADOS), so this was the third unique diagnosis method I have experienced. After that, I spent time talking with a psychiatrist, and then did many tests. It is for a research study conducted by the Autism CRC. Walking in I had been going through, and experienced, the usual “meet new people” issues. Complicating the meeting was the fact that they were focused on me. Would I behave appropriately? What is appropriate behaviour when my behaviour is being studied? Could I relax sufficiently for them to properly evaluate me? A problem with this situation is that no interaction with another person feels natural. Everything is a conscious and energy draining decision…

Do I respond? What is the message I should transmit? Can I do that with a gesture, or do I have to translate it into words? Is my response natural, am I relying on a learned script, or am I wrongly influencing the outcome by logical analysis of expectations?

When an attempt is made to study my natural behaviour, how do I know what is natural so that I can display it? Given that as a starting point, let us move onto physics. In physics, the observer effect describes how the act of measurement changes the quantity being measured. Being aware of the observer effect, and being unwilling to bias the research result one way or another puts me in an awkward position. How real are my actions when I am acutely aware of being observed. Each interaction with another person becomes an over-considered response. Then there are other actions which I usually suppress with other people – should I let them free or stay controlled? And there is consideration of both of those thoughts in the context of whether I am succumbing to the observer effect. It is impossible to think through this situation and arrive at a reasonable answer. So it is up to the researchers to be a step ahead of my thoughts, both in conducting experiments and in constructing evaluations for clinical use. I expect experience is essential in being able to pick apart unintentional deceits from natural responses in a research subject or client.

It becomes the reverse of that in which I am experienced. I attempt to free my natural behaviours, and suppress my over-thought responses. At times I amused myself by recognising what the other person was discretely evaluating, and then was even more bemused by recognising that I had become another observer in this infinite knot of interaction and observation. In retrospect, even though my goals were reversed, this messy overwrought process was actually somewhat representative of my typical interactions. Perhaps I paradoxically behaved more naturally because I am, at the least, unpracticed in being natural?

It has been an extremely draining day, and this piece of writing is me beginning to come down from the experience. Recovery may take several days. I know it is irrational to become so anxious and experience discomfort when meeting new people and participating in new activities. Knowing does not stop it from occurring, but I do prefer to be involved. Though I was not told any results, it was verbally confirmed I have a “clear” autism spectrum diagnosis. I will be provided with the results of the tests in time. That is much better than other research to which I have contributed where I felt like a lab rat – I feel like a member of the investigation team by having my data shared with me.

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