You Don't Pass or Fail This Test.
It's been nearly six months since I did an autism assessment and my therapist suggested that I write this down because of, you know, dwelling.
I decided to share this because most of the information I found about doing autism assessments as an adult came from the UK. Having both public and private healthcare options at least gives some options. Also, the UK is less than 100,000 square miles. The state I live in, in the USA, is more than half again as big.
I expect that this will be long, disjointed, ramble-y, and that I'll go off topic.
So, a bit over 14 months ago I did a treatment called transcranial magnetic stimulation to try to help me with chronic depression. I got the treatment each weekday for 7 weeks. Once a week I would "meet" with two doctors via teleconference for 5-15 minutes. During the fourth or fifth meeting one of the doctors suddenly asked if I was autistic. The question seemed to come out of nowhere, especially because this doctor had only spoken with me for less than an hour over the course of several weeks. It made me wonder, though.
The next time I saw my General Practitioner, I mentioned it to her and she jumped on the idea. She said I should absolutely do it, with hardly a thought. One thing to understand is that I've known my GP since we were in high school together. We were friendly, but not friends. It was a friend-of-a-friend thing. Still, she's known me for more than 20 years and her quick reaction was intriguing and scary.
I went home and started to research what went in to getting an assessment as an adult because most assessments out there are for children and most clinics and doctors don't do adult assessments. I found some blogs and videos made by people who had an adult assessment, all from the UK. So, more research for USA assessments.
Here's what I found: None of the clinics and doctors I found who do autism assessments for adults take insurance, only cash. None of the clinics or doctors I found online would do an in-person assessment, only telehealth.
Fun fact about me: I HATE teleconferences. HATE them! Camera comes on and faces appear on screen and my brain starts screaming, "GET OFF! GET OFF! JUST SAY WHAT YOU NEED TO END THIS!" Not exactly what you want to have going on in your brain while going through a psychological assessment. Hard to give honest and complete answers.
My therapist didn't know of any local or local-ish options either. Autism is not her specialty.
The next time I saw my GP she asked me about my research. I told her I hadn't found anyone I could go to. She pulled out her phone and gave me the contact information for the PsyD who had recently done assessments for her wife and son. He wasn't local, but she assured me that he'd see me in person.
And so, I contacted the PsyD. Like everyone else, he did not take insurance, but his rates weren't horrible and I'm fortunate to have some savings. I scheduled three appointments, two for assessment times and one for the results. I could have done all the assessment in one go, but thought that a 4-5 hour appointment wouldn't be a good thing after the drive I was going to make. Also, I had to book hotels. Hooray! Now I have even less savings.
The title of this post was one of the first things the PsyD said to me when we started the autism assessment. I suppose it's a good thing to say to most people. I, however, went into the assessment not knowing the answer that I wanted. Without that, how could there be a pass or fail?
The assessment was sort of a lot of different games.
There was a set of letters and numbers on a page. I connected the numbers in sequence. Then I connected number 1 to letter A to number 2 to letter B and so on. These were timed.
The PsyD put a finger through holes in a piece of paper and then I repeated it.
There was a sort of Guess Who game. A series of images and I had to ask yes/no questions until I figured out what the PsyD had picked. I don't remember if I only had a certain number of questions. I don't think there was, though, because I figured them all out, eventually.
There was pattern recognition stuff. I got a series of images and had to pick the next one. I was given a bunch of cubes that were red and white then had to recreate the pictures that were on the tablet. It reminded me a lot of the tangram game that I used to play as a kid, Tangoes.
I did a couple of series of math and word problems. There was a word game where the PsyD would use a made-up word, like clest, and I'd have to guess the meaning and then the PsyD would give a sentence to add context and I'd guess again and a new sentence and a new guess for five or six times.
There were some listening exercises. One was the PsyD giving me instructions and then asking what the fourth step was or what was supposed to be done after such-and-such. Another was a series of recordings and answering questions about what was said.
Between the "games," the PsyD asked general knowledge questions. History. Life skills.
We discussed sensory sensitivities. Smells I don't like. How I reacted to noises. Textures that I can't stand. The fact that I don't like touching people or being touched by people. The difficulties of eye contact and the methods one can use so other people think you're looking at their eyes.
We talked about my enjoyment for fictious histories (science fiction, fantasy, and super-heroes especially) and my occasional obsessions over minutiae.
We also talked about the patterns I follow and how I park five minutes away from my office, out in the dirt, because I get to park in the same place 99 days out of 100 and my reactions to that 1 day that I can't park in my usual spot.
I also spent a while explaining, as I have for every mental health professional I've ever spoken with, the difference between being alone and being lonely and how being alone doesn't mean being lonely. It's discussion that is always, unfortunately, necessary.
I did several written self-assessments. One for depression. A couple on autistic traits. A few others for general emotional and intellectual health.
My favorite part of the assessment were the story telling sections because I really enjoy stories. For the first I was given a drawing and asked to explain what was happening and why in the picture. For the second I was given a picture book and asked to tell a story using the images; this was hard because I didn't know what was going to appear when I turned the page. Why the heck was there a knight from a chess game after the third page turn, but not on the ones before it and how do I fit it into the story I'd already started to tell. For the third and final story telling section I was given a bag of objects and told to pick five to use to tell a story.
During my assessment, the PsyD four times said, "Not in [blah blah] years of giving this test has anyone [blah blah]." I'm not sure how I feel about it now. I wasn't sure how to feel about it then.
The first and second times were during general knowledge questions.
The first was "Who is Catherine the Great?" I knew she was an Empress of Russia. He said no one had ever correctly answered the before. And I guess that's okay. We're in the USA and, in my experience, people in the US don't know US history very well. I wouldn't expect the average person in the US to know European history. The PsyD asked me if I knew it because of the interest in general history we'd established I have. I had to say "No" because I researched who she was after hearing the lyrics "And if you think of her as Catherine the Great / Then you should be the horse to help her meet her fate" from the song "Go Home" by Barenaked Ladies. I wanted to get the joke. What do you mean most people don't break out an encyclopedia to research the historical allusions in pop rock songs?
The second time came when I was asked at what temperature water boils. I answered, "212 degrees Fahrenheit at sea level." He paused and looked at me and looked at his computer and looked at me again and said that no one had ever qualified the temperature at sea level when he'd asked the question. This did surprise me. I assumed that autistic people would be more likely to be precise in answering questions. Maybe it has to be a question about something you're really interested in though? I'm interested in preserving foods. You have to lengthen canning times at higher elevations because water boils at lower temperatures due to lower air pressure and you need to make sure you heat everything enough to kill the bad bacteria and whatnots. At the elevation I live at, water boils around 206 degrees Fahrenheit and I need to add several minutes to the canning times. Don't even get me started on pressure canning low acid foods: gotta adjust the PSI to make sure water doesn't even start boiling until it's close to 240 degrees Fahrenheit. Learn more!
The third time was while I was filling out a written assessment. It was a rate the statement from never to always and one of the questions read: "Daydreaming; spiciness" and I was like WTF? Okay, so, one of the reasons that I went to see a PsyD whose practice is nearly 400 miles away from where I live is because he was the only one who I spoke to who was willing to do the assessment in person. Everyone else said video conference only. Being in person would allow a level of comfort so I would ask questions when I had a hard time understanding what part of some questions were important. And this one was the most baffling to me. Daydreaming? Semicolon? Spiciness? Was it supposed to be about? Daydreaming about Thai food? Daydreaming about sexiness? Was it about a choice: daydreaming or spiciness? So, I asked, "Spiciness?" and he said, "What?" and I lifted the paper and pointed to the question and I said, "Spiciness." He took the test from me and read over the question. After a bit he said, "I've been using this test for 10 years and never noticed that before. No one's pointed it out." He told me to pick the middle score so it would balance out. To this day, I wonder, was it part of the test to see if a person would just answer the question without asking about it? It's hard for me to believe that no one else who's taken this exam wasn't confused by "Daydreaming; spiciness." Other people had to wonder, right? Were they just afraid to ask?
The fourth time was during the final story part of the assessment. As written above, I got to choose 5 objects from a bag full of stuff and was told to tell a story that used the objects. I very carefully chose objects that I believed would be found together. Objects I've seen sitting on kitchen or coffee table. I proceeded to tell a story about the objects and how they tried to help each other. I made sure that they all interacted with one another and gave them traits to make them unique. I even brought the story to an end where a couple of the characters were physically and/or emotionally changed. The PsyD said that it may have been the most creative story that he'd ever heard in his time doing this kind of assessment. I'll admit that his statement made me feel really good. Like I wrote earlier, I like stories. I like to experience them. I like talking about them. I like telling them. It's always nice to know that I've done a good job.
One thing, though, on my drive away, maybe an hour later, it occurred to me that there were no humans in my story. I anthropomorphized the objects, but I could have told a story about a person using the objects. As I drove, I thought about the objects that were in the bag and figured out what story I would have told if it had occurred to me to tell a story about humans. I wondered, and still wonder, if anthropomorphizing was more "normal" or more on the spectrum.
The next week I made the long drive again to get my results.
The PsyD began by reminding me that you don't pass or fail this test. He gave me a paper copy of my results and a pen for taking notes. He then said that if there was a scale from 0-10 for autism, he'd rank me as a 3.
After I sat with this information for a little while, I told him I was ready to move on and we went through the results page by page.
We played a game that was sort of like Guess Who? except it had all sorts of things, not just people. While looking over the objects, I noticed that if I asked one question the choices would go from a lot (I want to say 36ish?) to six or seven choices. (I think it was asking if if the choice had wings.) So, that was my first question each time. It worked once out of the three or four times we played, but it worked. When I got my assessment results this way of playing was considered an autistic tendency. When I asked him why he basically said that the first question should have been the one that eliminated half the choices each time. (That question would have been asking if the choice is living.)
This confused me because why is asking one question considered an autistic trait while asking another is not? Either way you are just asking the same question each time you begin. I've played Guess Who? for years with wide variety of ages (It's something that happens when you're the oldest cousin and the youngest is more than 20 years younger than you are.) and the most common question is asking if you are a boy or a girl because you can knock down half of your tiles. But if you ask if they have facial hair you can cut the choices down to five. When you win, you win big. And since the other player's choice is a random card, they can't fight your pattern. The PsyD got to choose the item each time.
Logically, I know that trying to cut the choices in half each time is probably the best play, but it feel so good when your first question knocks down 21 tile. Maybe I'm trying to rationalize away an autistic trait. Maybe it's a stupid data point in the assessment. I'm going to continue to ask if their card has facial hair, first.
Something that surprised me was learning that part of the assessment was an intelligence test. He said it was a standard thing.
I want to make it clear here that I am not bragging, but I'm afraid that it may come off as bragging or whining about something that I should be proud of/grateful for.
There are five parts to the intelligence test. I scored very well on two parts. On one part I scored very, very well. On the other two parts I scored just fine.
The PsyD told me that this is probably one of the reasons I have trouble connecting with people. He said that I process information differently, faster than most people and that sets me apart from them. This, he explained, is one of the things that makes me so different from everyone else.
He meant this as a good thing. A way that I could better understand myself. Maybe even something to be proud of.
But, for me, this is the most wounding part of the assessment. Learning whether or not I am on the spectrum was the point on this. Learning that I am different in a way that's… I dunno. Let me explain a bit of my insanity:
One of my greatest desires, for as long as I can remember, was to be "normal." Or at least perceived to be "normal" by people.
Well, because being normal means you're left alone. Ignored. You're safe. I want to fade into the background and be barely noticed.
Because I've been fat for as long as I can remember (my clothes came from a special aisle of the kids clothing section), I could never really be "normal" by just keeping my mouth shut. I had to work at it.
When I learned that it was "weird" for a kid to take ball and bounce it alone in the corner of the playground, I discovered that if I stood in line for 4-square or tetherball I didn't have to speak with the other kids, but everyone thought I was interacting. Bam! "Normal"!
When I learned that you weren't supposed to watch TV shows that were geared toward younger kids or kids who weren't of your perceived gender… well, I didn't stop watching those shows because I enjoyed them. I watched the shows with giant robots and lasers, and the shows with groups of friends in rainbow colors, sometimes also in fruit flavors, who would offer the villains friendship, and the shows that taught kids numbers and letters and empathy, but I didn't talk about two out of the three groups of shows with people who were outside of my family.
When I was outright told by other kids, of all genders, that it was wrong for me spend time with people who weren't of my perceived gender, I stopped spending time, outside of the classroom, with those who weren't of my perceived gender. This one hurt because I couldn't spend time with people I liked and I believe genuinely liked me. I still feel guilty over this, but I didn't want to stand out.
I want to make this clear: wanting to be "normal" is wrong and stupid and a lot of exhausting work. I don't want anyone out there to be something other than themselves. I want my siblings and parents and nephews and niece to be happy with who they are. I want this for everyone out there.
The good news is that I don't have to put on this kind of a show as much. Not because I've gotten over it, but because as I've gotten older, I'm less required to be social.
Also, I want to say that I never felt wrong or bad being me. I enjoyed bouncing a ball by myself. I enjoyed the TV shows and people I enjoyed. I'm cool with my sexuality and gender (once I learned there were words for who I am). It's always been for other people so that I could feel safe.
I've known I'm officially on the spectrum for about six months and I still don't know what to think about it or how to… I don't know, understand it?
I've visited websites and forums, but they haven't been helpful. There are a lot of people out there who tell others that they aren't being autistic properly. You should do this. You shouldn't do that. You're hurting other autistic people by just trying to live your life comfortably and safely.
Maybe my therapist is right. Maybe getting this out of me will help. Not right now, but maybe tomorrow?
