Part 7 in the I Think I Might Be Autistic Series
As I mentioned previously, there are different ways of getting diagnosed. Depending on what route you choose, your evaluation may involve questionnaires, cognitive tests and/or a diagnostic interview.
My evaluation was done by a neuropsychologist, so I’m going to talk about that here. I hope other autistic individuals who’ve been professionally diagnosed will continue to share their stories in the comments to create a more diverse picture of what diagnosis can look like.
Neuropsychology is a field that looks at behavior in terms of brain function. Autism is a developmental disorder, not a mental illness, so diagnosing ASD is one of the areas that neuropsychologists specialize in. Clinical psychologists and psychiatrists who work with autistic patients will also use many of the same tests and procedures described here.
When I made my initial appointment, I was told that testing would take 4-8 hours and might be split over two or more appointments, depending on how fatiguing I found the tests.
A few days later I received a 17-page questionnaire in the mail. The instructions said to complete it and bring to my evaluation. The questionnaire covered personal and family mental health history, cognitive symptoms (memory, daily function, auditory/visual/balance, etc.), childhood development and an open-ended question about why I was seeking an evaluation.
I used the open-ended question to make my case. I started out with “I suspect I have Asperger’s Syndrome” and then listed my major symptoms as I understood them at the time: social awkwardness, rigidity, attachment to routine, intense interests, difficulty reading facial expressions and body language, clumsiness, etc. I tried to focus on the symptoms that fit the DSM categories first and then listed other less universally recognized symptoms after that.
Beneath the open-ended question was a set of check boxes that said:
Overall I think that there is:
- nothing wrong with me
- probably something wrong with me
- definitely something wrong with me
In true aspie fashion I checked the “definitely” box, crossed out “wrong,” wrote in “different,” then annotated it with a few descriptive sentences. In fact, I annotated a lot of the “ticky box” questions. By the time I was done, my questionnaire was a scribbled-on mess.
Whether you receive a history questionnaire or not, I strongly recommend making notes to bring to your appointment. The time you’ll spend with the doctor conducting your evaluation will be limited; it’s important to bring up everything you think will be helpful in getting an accurate diagnosis.
If you find speaking about your symptoms difficult, prepare a concise (no more than 1 page) written summary to give to the doctor at the start of your appointment. Autism causes communication difficulties. There’s nothing wrong with telling the doctor that you prefer to use a brief written description of your concerns as a starting point.
Most importantly, as you prepare for the appointment, try to relax. I know it feels like there’s a lot riding on the outcome, but all you have to do at the appointment is be yourself. This is one time when being your own hot mess of an autistic self is encouraged.
Preparing for your Evaluation
- If the doctor’s office sends you a history and/or symptom questionnaire, take it seriously. Fill it out as completely as possible, providing specific examples where you can. Don’t hesitate to add additional information that you feel is relevant.
- Make notes regarding what you want to talk about as part of your diagnostic interview.
- If necessary, prepare a written summary of your symptoms/signs/traits for the doctor.
- If you have questions, write them down and bring them to the appointment so you don’t forget.
- Try to relax and remember to be yourself.
11 thoughts on “Adult ASD: Preparing for Your Evaluation”
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I love your perception to seemingly little details that make all the difference. You’d make a great teacher, as the questions you’d ask would not be shallow. I also wonder who’d answer “Nothing wrong” or even “Nothing different” with me. 😉 Great post. I particularly like crossing out and making corrections, clarifications and comments on government and other official forms. It’s amazing to see the half baked material people get paid to publish.
Thank you! The forms begged to be “edited” a little.
I’m not sure who might check the “nothing wrong” box but perhaps someone who was being sent for an evaluation that they didn’t agree with? The practice I went to also does “forensic” evaluations, meaning evaluations for criminal proceedings so I guess that might be one instance.
Yes, somebody with complaints about the form would have fair issues. This reminds me of leading questions such as, “when did you stop beating your wife?” or “When did you stop drinking alcohol?” Unfortunately, most forms, tests and questions are created by the majority of the population that fall in the “Object Personality” camp. I seem to recall their percentage is estimated between 66-75%. If you belong in the insightful, philosophical Subjective Personality minority, then it makes for a more interesting life. 😉 A simple requirement for a job designing forms should be “attention to detail,” in other words, somebody with at least Aspie tendencies.
Oh gosh, there were actually question similar to that on one of the tests I took for my eval. Things like “I don’t know why people are upset at my ‘so-called illegal’ drug use.” At one point I started to get a little paranoid because I was worried that I’d misread something and end up with a completely unexpected diagnosis.
I was part of Dr. Baron-Cohen’s study group and when I got the AS questionnaire, I did the same thing – crossed out, annotated, commented on every question. I don’t know if anyone at Cambridge paid attention to my answers, but I was dropped from the study after that. No one said why. “Non-compliance,” I imagine. *sigh* I can’t help it, though! Forced-choice questions make my brain itch.
I’m not surprised you were dropped. The autism research that the ARC produces seems oddly in line with whatever hypotheses they set out to prove. You probably didn’t fit the model.