Thursday, December 1, 2011

My path to diagnosis and the diagnosis process

As I last covered what are the benefits of getting a diagnosis, it seems logical to actually complete this post about what the diagnosis process was like for me. As this is from my memory there are likely mistakes in the early parts of it - I don't remember exactly when everything was.

There are three main paths to getting a diagnosis - hearing about Asperger's (or whatever else) somehow, deciding you match the symptoms, and finding someone to professionally agree or disagree with your self-assessment; seeing a professional for other reasons and it being identified and diagnosed; and getting someone else bringing you to a professional to see about a diagnosis of something (usually in that case the person bringing you is a parent). I consider my process of diagnosis having taken 9 years and consisting of bits of each of these paths.

During the 2001/2002 school year I was in seventh grade. It was during this year that we split my math education off from the school system. During this year we also tried asking about me going up to the high school for math while being in the eighth grade the next year. The school system denied this request. This was the last straw and we started looking into me going to a different school, and decided on me going to a charter school (essential school specifically), in the fall.

It was also either that school year or the summer after that for some reason that I'm still unsure of, possibly being worried about bullies but I have no idea, that my sister and I each had an initial meeting with a psychologist. She decided that my sister had no reason to see her again after one or two meetings while it was worth it for me to continue seeing her. From those meetings I remember turtling a lot, not knowing what to say or how to make decisions (like normal for me), and going through the decision process of whether I should go into the 8th or 9th grade in the fall. (We decided for various reasons the 9th grade would be better, one of the people running the school thought I wasn't socially ready to skip a grade, 3 weeks into the school year they realized they were wrong, moved me up, and I was in a far better place socially after skipping a grade).

At some point she diagnosed me with social anxiety developed from being bullied in school. This ended up relevant when later in the year I ended up sobbing in school and in a terrible shape. In this new school we swapped who was in classes together every 6 weeks. One of these occurred and I was put into a class where none of the people I knew well were and one where most of the people were those who didn't do their work. I couldn't cope with this at all. Because of my social anxiety diagnosis I ended up with a 504 plan that said they couldn't place me in a class without one of the people I knew best. They dealt with this by always putting me and my best friend in a class together rather than having to deal with a larger set of people that they needed to have one of them in the class with me.

I don't know exactly when I stopped seeing her. I'm pretty sure it was during 9th grade. Whenever that was is also the first time I heard of Asperger's. Before that point I'd only ever heard of autism at the non-verbal level. I'd never thought it might apply to someone like myself. The last session I had with her she told my family and I that she thought I had Asperger's and that she'd be unable to help me anymore because she didn't work with people with ASDs.

So in 2002 or 2003, I first heard that I was likely autistic, yet at that point I wasn't diagnosed, and didn't go on to see anyone else. What I was told at that point was that because I was high functioning and female, it wasn't worth pursuing a diagnosis. The bias against being female and autistic was strong enough that it removed the little benefit that I'd have gained at that point as I was successful academically. The other thing I was told at this point was, like her not being able to help me anymore, that I'd not really get any help from anyone who didn't work with people on the spectrum. So the recommendation was for me to see someone who worked with people on the spectrum who didn't require a diagnosis.

Of course most people who work with people on the autistic spectrum want diagnoses, and because I wasn't diagnosed I couldn't work with them. This means that at that point I didn't see anyone because of the lack of diagnosis. I don't know whether I would have if I did have a diagnosis. So through tenth grade and the beginning of junior year I saw nobody for any of this.

Junior year was interesting when it comes to all of this. For junior and senior year I went to another different school - in this case, I had been accepted into the junior and senior year only exam school. This school accepts 50 students per year of those who apply, of their choice, and push these students incredibly hard junior year such that your effective freshman year of college that follows senior year seems like an incredibly easy break. While my parents have very low opinions of this school, it did a huge amount for me, though it wasn't simple even outside of academic situations. I had problems come up that should not have came up that, as I found out years later, meant that they almost kicked me out of the school.

Junior year I ended up having rather problematic miscommunication problems with multiple of the teachers, without my knowledge that it was happening. I had one teacher convinced that I was lying about doing my homework because of being uncomfortable presenting when I wasn't completely sure of what I was doing. (I'd done the work but I wasn't sure that I was right.) I had another teacher convinced that I didn't understand the foreign language at all because of not participating in conversations that I had no interest in nor knowledge about content of. Because of these types problems, we ended up needing a meeting about me not leaving the school. They ended up agreeing that I'd stay in the school as long as we pursued help for me.

This ended up leading to me ending up on anxiety medication and seeing a therapist. We managed to actually find someone who accepted me and worked with adolescents on the autistic spectrum. Her specialty was "social learning disabilities". I still don't think the medication was worth it - the first one caused interesting problems (I'd remember to do my homework and forget to turn it in), and the second one I was unable to tell if it helped and when I eventually weened off of it I ended up with near daily migraines. However, seeing that specialist was incredibly good for me. She worked with me using the knowledge of Asperger's rather than treating me like any other person and helped a lot. The difference between me at that point in junior year and when I went to college was something I could tell.

In college, well senior year of high school, I found the SFS. When I got there, the SFS was so aspie friendly that we ended up at one point with everyone in the room identified with Asperger's to some degree. This was incredibly good for me in a different way than my high school friends were (who I still feel far closer to and still trust far more, but didn't have this particular aspect of being able to relate on this topic).

Unfortunately, relating to Asperger's went a bit too far in the SFS at this point in time. It became such a big thing that it started bothering me to have people identifying with it with as little information as they had. It started feeling like with so many people involved people started holding individuals to expectations created because of other individuals who may or may not actually have been on the spectrum. Relating to this was good, but at the same time, we were going over the top. I no longer felt comfortable identifying with Asperger's. I stopped considering myself self-diagnosed. When I started thinking about it again I ended up deciding that I identified as not neurotypical. I wasn't sure what I was, but I was clearly not "normal".

The June 2008 was the first time I was on the lease of an apartment. The July 2008 my grandmother died. January 2009 I started my MQP (in major senior project). January 2009 my grandfather died. March 2009 my other grandfather died. Throughout this entire time the group of people in that apartment were not an appropriate one. We'd thought it'd work fine, but different needs for things like temperature just didn't mesh at all. I ended up crashing hard. My mental state couldn't deal with so much going on at the same time, especially so many deaths in the family.

April 2010 I got a new primary care doctor. She thought it was incredibly important for me to see a counselor after how that year had gone and how much it was affecting me. For all of 2009 I had basically pushed it off, focusing on academics, and when I finished my MQP in December 2009, I was unable to cope. I no longer had something to throw myself into and without something to do, everything that happened hit at the same time. We went through who was available in my insurance, found someone, I tried seeing her. She was good but hard to get to, looking back I agree that she wasn't worth the awkward travel, though she was far better than I expect out of a generic counselor. We tried looking for someone who would see me who worked with people on the autistic spectrum, people kept either not returning calls or being unable to take someone without a diagnosis. We found someone else for me to try, she didn't work at all for me, I regularly left her and went home in tears. That didn't work. We needed something else.

During this we process began the research of what it actually took to get my a diagnosis. My parents got a recommendation from a local autism resource center for a particular person for diagnosis (as well as some counselors we tried to get in contact with, but failed at). October 2010 we met with this person for the first time. We went through an initial review of me and my past. After this meeting he decided that yes, I should be evaluated for Asperger's, and submitted a request to my insurance for them to cover it. They denied it saying that they didn't feel it was necessary for me to be evaluated for some reason or another. When the second of those counselors failed so drastically my parents decided that we were going to just get the evaluation anyways, going ahead and paying themselves instead of via insurance. (Later the cost was included in the insurance deductible because of ARICA having triggered in January 2011).

July 8th, I had a 4-5 hour evaluation done.

July 14th I got the results, a diagnosis of Asperger's Syndrome, and an 11 page report of the evaluation.

The diagnosis process

This might should go in a different post, but I think of them together whenever I think of the subject, so they're going to go ahead and be together. I'll at least set it apart with the above header

The diagnosis process for me consisted of three meetings with a neuropsychologist - the background information, an evaluation, and the results meeting.

The first meeting was entirely background information, both my parents and I were interviewed about me at work (of which there was little), at home, and at school throughout my life. A wide variety of questions were asked including about my past with mental health professionals and why we were pursuing a diagnosis. This meeting ended with determining that he agreed that I was likely autistic and that further testing should be done to determine whether that is true.

The second meeting was long. I went in at 10 am and left between 2:30 and 3 pm. This meeting was the primary evaluation. These hours were spent primarily with me doing tests and answering long lists of questions on paper. For each of these he observed me taking it as well as looking at the results of the tests. There was also a bit more verbal questioning but not much of that.

The first thing I filled out was a way too long multiple choice question about general mental health, the Personality Assessment Inventory. Mostly this was long, though I might have confused him with some of the questions I asked while filling it out. They were certainly not normal questions.

The next major thing I did was an IQ test - the WAIS-IV one in particular. I definitely don't think my score on this was actually accurate but it got enough of the information necessary across. This was used to compare my IQ percentile to my later percentile on things to do with recognizing emotions in others. The reason I find it innacurate was because I ended up beginning to completely shutdown in the middle of it because of how the testing was going. I had to give quick definitions for words until I stopped being able to do so with the list he was giving me. I'm not sure whether he noticed that the point that I failed was as soon as the words became emotions based. This was fine, except that I was shutting down beyond just being able to answer those questions when I was unable to answer word after word, all of the same type. Also of note was the memory test where I had issues focusing on trying to remember the numbers being listed rather than putting the effort into trying to find a pattern so I only had to remember the pattern. I think I mentioned that to him on that subject. It was just so hard to not look for a pattern instead of just remembering the numbers.

I also had to do some arithmetic, reading, and spelling tests. I'm not quite sure why those were there. One of the reading tests was amusing however. He gave me a thing to read, told me I'd read it while he measured how fast I read and then I'd have to answer questions, and specified I had to read for content rather than speed. I asked him "What if I finish reading before the minute is up?" got the response "You won't", asked again "No really, what if I finish early?", got the response "Well, I guess you finish early then, but nobody's done that yet.".... So I read it and when I finished I looked up and said "I'm done" and surprised him. I think I finished in under half a minute. He questioned the reading for content and I reassured him that no, I really did read that quickly, I really had to ask him that question before hand. In my later report he noted that all he could get in my reading speed score was that I read faster than 99% of college graduates.

I also had to do multiple tests on executive function. This included the Trail Making Test, as well as the Conners' Continuous Performance Test. The latter one was frustrating. I had to click the space bar after every letter that popped up on the screen that wasn't an X (and only letters popped up). It didn't matter how much I focused, I kept failing to not click the space bar on the X. He eventually noted that my results on that were borderline ADHD levels, but when he gave me the self report scales for ADHD there was no way that I matched the symptoms on that

And then there's the tests that specifically have to do with autism diagnoses. For this I had the AQ test, EQ test, pictures of faces to match emotions to, voices to match emotions to, voices to match to faces, and stories that I needed to answer whether anything someone did was 'awkward', and why. I feel quite awkward not including more here with this being such a big part of the evaluation, but it really is far more straightforward than the rest of it was.

Anyways, the third meeting was when I got my results. He wrote up an 11 page report on what he saw from watching me and going through my test results. This meeting was going through the basic points through all of it, making sure that it made sense to my parents and I (as my parents went with me, it was my choice if they went). He asked after going through this whether anything he'd said was surprising, my parents responded no, and he then gave the diagnosis matching how he'd described me. I was then given my report that has been useful to have. How he went through this, giving the description before the diagnostic label was really the appropriate way to do it. If someone wanted a result they'd not be able to complain about the result when it occurred after the description, while if there were inaccuracies, they'd come up. That followed by specifying the describing the symptoms rather than the person (so the individual can identify as autistic or having autism) was a really nice way to get the results.

Once I got my diagnosis I was really able to start associate with this. Before that point I'd been too uncomfortable to do so much. Now, well, it rather turned into a special interest. Oops?

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