So not many people know this, but to the United States government, there always remains the distinct possibility that your disability, the one you were born with, could some day change and poof! You’re not disabled anymore. Because of this belief, when you apply for certain services, it wants to know how recently you were fully evaluated and tested for your disability, and if it has been more than a certain number of years, they would like you to prove that you’re disabled.
Recently, my state wanted to know whether my primary disability was autism or mental health disabilities. To me, this is like asking if oobleck is a liquid or a solid (it’s both!) but since I do need services, I dutifully trekked into the Big City and endured about six hours of neurological testing. To say it was unpleasant is an understatement. There is nothing better to make an adult feel like a toddler than to undergo tests designed to root out your weaknesses and slap you with a functioning label.
The tests start with your initial appointment. The goal of this appointment is to get an in-depth medical history. In-depth, unfortunately, does not necessarily mean accurate. As I would discover later, the interviewer got several things wrong on my medical history. Some of these were significant things, like the reason I qualified for social security disability.
“So you qualified because of your back injury?” the doctor – let’s call him Dr. Z – asked.
“No. Because of my autism,” I distinctly remember telling him.
A month later when I sit down to look at my medical history, it says that I got it due to my autism and back problems.
Medical histories are, overall, a very weird thing, because you are expected to bare your soul and most private secrets to somebody you have just met. The doctors want to know, among other things, what your birth was like (“I have no idea!” I said to Anna, later. “It’s not like I was there!” She looked at me oddly. “Yes, you were,” she pointed out. Oh. Yes, I guess I was. But it’s not like I remember it!) They want to know about your family, what they do, their level of education, illnesses, medical and mental. Your childhood, any significant head injuries, hospitalizations, abuse. They want to know every medication you’ve ever been on. (How about I just copy this entire psychopharmocology textbook down and we will call it a day.)
“How often do you socialize?” Dr. Z asks.
“Well, does church count?”
“I don’t know, does it?”
“How many friends do you have?”
“How do you define friends?”
“However you do.”
Almost all of the questions are open ended, which is the sort of question that I’m the worst at. Looking over their report later, I see that I left things out. I assumed that by explaining I see my niblings that they would understand I also see my siblings, who are the parents of the niblings. They wrote down that I had no contact with my siblings. Unfortunately, I think that such misunderstandings are basically impossible to avoid. When you have a neurotypical person interviewing an autistic person, things will get left out. Things will get overlooked. Autistic people often don’t offer any more information than precisely what was asked for. When others want us to elaborate our answers, we freeze, and the words don’t come. When I am writing, my brain works better, smoother, than when I am speaking. This is a simple fact. This fact is not at all reflected in any of the testing that I did.
I was being interviewed by two strange men – Dr. Z and his graduate assistant, who sat, awkwardly typing, in a corner of the small room the entire time and didn’t participate in the conversation – I think he was just there as a scribe. They asked me about my dating life. I blanched. I read both of these men as straight and knew both of them not at all.
“I – I can’t talk about that. Not in front of you.”
“Okay, well, why did you write down ‘queer’ as your sexual orientation? How is that different from bisexual?” Dr. Z asked.
I am genuinely confused. It’s 2018, and we are in one of the most liberal cities in the country, and he doesn’t know the difference? I try to explain, but I’m not sure if he gets it. I do know that I’m utterly humiliated when the word ‘menstruation’ is written down on the report regarding some of my medical issues – I had couched it in the polite euphemism of ‘that time of the month’. I was raised to believe that men had absolutely nothing to do with that sort of thing, and would be perfectly happy pretending that 50% of the world didn’t know that you-know-whats existed.
Two weeks later. I get up, bright and early, and am shown into yet another tiny, windowless room with fluorescent lights that flicker and hum. This time it’s a different doctor as Dr. Z has gone on vacation. A different graduate student/doctoral fellow. The doctoral fellow will be doing the actual testing. I have previously explained that I have taken many of these tests numerous times before, and I have also studied them from an academic standpoint. For this reason, some of the tests that I will be given are somewhat obscure. Well, let’s go then. Time to start.
One of the things I have always prided myself on is my memory. I have a good memory. I can remember being six months old! I don’t know any neurotypical people who can do that. But these tests of memory aren’t like that. They aren’t tied to emotional events. They are strings of numbers that I repeat back. They are lots of words I have to remember.
In the hallway, a pager goes off. I startle, look towards the door, wait for it to stop.
“Please remember that this test is timed,” Fellow says.
“Yes, but there’s that loud noise!” I exclaim.
“You are invalidating the tests if you interrupt them,” he says in a way that makes me think he is only pretending to be patient.
“You honestly expect autistic people to ignore that noise?” I ask.
Yes, apparently, he does. This incident was written on the report as, “She startled with an audible gasp and postural rigidity when a pager beeped in the hallway on three occasions.” Which is some really weird wording for ‘she was startled because she’s autistic and startles easily’, but the entire report is written in really Fancy Medical Language. I reported, denied, stated, complained – I never just said anything. And for the record I don’t think I complained about anything, other than the stupid beepers going off, (It’s 2018, why are you using pagers?) and one particular test.
More words, more numbers, some simple math that I know I mess up. I remember that a chisel is a tool. I circle all the X’s on a page of other letters. I play several weird dot-to-dot exercises. Then it comes – the worst part. The stupid-little-faces part.
In this test, you are presented with a grid of about twenty or thirty squares. About half the grid is filled in with small photographs of faces, of all ages and ethnicities. You look at the grid, then it is taken away and you are given a lot of little cards with faces on them and a blank grid. Your job is to not only recognize the faces that were on the original grid, but to put them in their original spot. This proves to be basically impossible for me, but I still have to do it three or four times.
Another test with faces. Match the face to the emotion. Once again, I have absolutely no idea. I explain to the tester that I don’t need to do this because in real life I would just ask the person how they are feeling. I would explain that I’m autistic and I have trouble telling if they’re mad or not so could they tell me, please? This does not get me out of this test, or the next one, where I hear a voice and have to match the emotion in the voice to one of four faces. The really tricky part of this test is that the race and gender of the speaker’s voice does not necessarily match the race and gender of the pictures on the cards. I am supposed to do it by tone of voice alone. Then I am supposed to guess what they are feeling. I say guess because, well, it really is just a game of guessing to me. When in doubt – which is the majority of the time – I pick angry. In my experience it is always better to assume that people are angry.
Okay, here’s an easy test. Name that object. There’s a flipbook with a drawing on each page, and your job is to name the thing in the picture. Some of them are weird. Harmonica, accordion – this seems to be a little biased, I mean, would I know what an accordion was if I hadn’t watched an enormous amount of television as a child? Probably not. Chair, tree – what is that called? I know what it is, my mom has one to hold up the roses which never bloom – trellis. That’s a trellis. That seems incredibly culturally-bound. Would someone raised in an apartment building know what a trellis was? Probably not. Wait, what’s this picture? It can’t be. It is. It’s a noose.
A noose. As in, a picture of a loop of rope hanging from the top of the page, a traditional hangman’s noose. I am outraged. I am shocked. Despite the fact that the report said I had a ‘flat, constricted affect throughout the interview process’ I remember my body and brain exploding at this injustice. Did they have any idea of how incredibly insensitive this picture was? How would seeing that picture feel to a POC? Did the Black Lives Matter movement mean nothing to them? I didn’t care that the test was from the 1950’s. It was totally out of date, it was inconceivable to me that they didn’t see the racism in that small drawing. A honest-to-god effing noose.
The tester promised to bring it up at some meeting or another. I have absolutely no doubt that he never did. When I got my results his supervisor had never heard of my complaints and dismissed them. After all, I’m not a psychologist or a neurologist. Who am I to question the quality of a test designed to tell them how good I am at naming objects? At one point in the report it said that my thought content was ‘generally appropriate to the topics discussed.’ I’m pretty sure that the parts where I was inappropriate were when I talked about social justice issues like racism, classism, and ableism and the myriad of problems that the tests would cause for people who were not, as I was, raised in an upper-middle-class, white family. A noose! I still can’t get over it. 2018. A noose on a neurological test, a test which is presumably being taken by people who are likely a little bit more prone to suicidal ideation to begin with.
We went on – I requested and was granted a break. There were some little plastic squares with red and white triangles on them. I had to arrange the squares so that they matched the picture, like tangrams, except at the end you don’t get the satisfaction of seeing a bird or a house, you just get the knowledge that you scored badly on a test that toddlers could do. On the fifth or sixth one I couldn’t make the pictures match no matter how much I turned the squares and triangles and the test ended.
This next test is a weird one. It involves a red bead, a blue bead and a green bead, all on sticks. The goal of this test is to make the pattern of beads-on-sticks match the one that the examiner made, using the fewest number of moves. I’ve never seen this test. It’s weird. It definitely feels like a baby toy. (It’s apparently called the Tower of London. The inventors obviously don’t think anyone taking the test know what happened in the real Tower of London.) I was average or below average on this ‘test of planning’. Planning what? I have no idea.
I looked at a picture and told a story – the story would have been much longer had I been allowed to type it. My story was apparently ‘overly descriptive’ – I wrote ‘several complex sentences regarding the gender roles that were assumed by the depicted figures’. Ha. This was definitely me being snarky on purpose and the tester missing it entirely. I love poking and prodding at stereotypes and gender roles and challenging people’s expectations. When I was told to repeat back a story the tester read to me I did so with social commentary because, well, of course I did. That’s how my memory works. Everything is tied to emotion and my own interpretation of things. I don’t remember that Mrs. B lived in this neighborhood because I was told; I remember because this the story said she was a single mother who worked as a waitress and I thought that neighborhood was very pricey for a single mother to live in on a waitress’s salary and thus the whole story was unrealistic. (I am fairly certain that the tester did not appreciate my commentary.)
There were a few more tests, including naming every word you can think of beginning with the letter ‘F’, which of course meant that my brain went ‘Fuck!’ and then ‘I can’t say fuck! What are other words that begin with F? I can’t say fuck in front of the tester!’ I also named animals, which for me consisted mostly of dog breeds, and I clicked a button on a computer every time the letter X came up. I don’t see the point of that test at all and I was utterly exhausted by this point. I went home and collapsed.
Two weeks later, I faced Fellow and his supervisor, Dr. A, in a small office. I asked my cousin, who works in the same medical facility, to come along as support, because I knew that I would challenge some of their findings and I also knew that I couldn’t do that without someone backing me up. It…..did not go well. To say the least.
“It’s like they didn’t even bother to get to know you at all,” my therapist said a few weeks later, looking at the testing.
“Nope,” I agreed. “They didn’t.”
Dr. A suggested that I undergo speech therapy and social skills therapy. I said no, I was in that therapy for 20 years and I had accepted the fact that my social skills were not going to improve any longer. She suggested a parent-led organization which I have had bad experiences with in the past. She suggested…….not much else.
Overall, I feel like the entire testing process was a total waste of everyone’s time, energy, and money, except mine, because I didn’t pay for the testing. The state wanted it, the state paid for it, the state got it. I officially have Autism Spectrum Disorder as defined in the DSM 5.
No surprise there. What was surprising was how after all these years, neuropsych tests still make me feel incredibly stupid.