A History of Hanne’s Universe: The Diagnosis Story

Every older person who finally gets their autism diagnosis (I say “older” here to mean 30+, but understandably there are twentysomethings who do not get diagnosed at an early age as well) usually loves to tell their story of when they were told “yes, you are autistic.” I think the reason for this is that many of us felt different or weird, or we noticed similarities in our autistic children and wondered “is that me, too?” For many of us, an autism diagnosis gives a meaning to the fears and bewilderment of why we do the things we do. But sometimes, it can also cause new fears and anxieties such as “now that I know I am autistic, is there nothing I can do about it?”

Due to the awful costs of health care, I feel strongly that there is nothing wrong with self-diagnosis so long as it leads one on a path to treating oneself better, more kindly and with greater understanding. For my own reasons, I wanted a medical professional to tell me whether or not I was autistic because I doubted my own self-diagnosis and had told myself I was just looking for an excuse for being so odd!

I sat down with a neuropsychologist who was well known in her field for her work with autistic patients. I was expecting a number of tests, but instead she just sat across from me and said, “So, tell me about yourself.” I was thrown a little off-guard, but soon I was able to unravel the story of my childhood: an early reader but a late talker (according to my parents, I did not talk until age 4. But because it was the mid-1970s and they could “understand” me, for some reason it did not cause them alarm) and unable to connect with peers except for those in the advanced reading group I was in (my first nerd tribe).

My father would often tell me that when I was a child I would tell my complete life story (and, to their dismay, the life story of my parents) to cashiers, waitresses, anyone who would listen to a squeaky-voiced gangly little girl. I told this doctor about how I felt the entire world a little too vividly. Despite my growing hearing loss (and annoying tinnitus), I have the inability to filter out any noise around me.  Sitting in a doctor’s waiting room often becomes a feat of strength as I hear every single conversation, every cough and hiss of the heater. A repeated tone on someone’s smartphone as they receive texts can cause my anxiety to ratchet up to fearful heights.

I also have the worst autistic super power ever: I remember people’s wardrobes, the jewelry or watches they were wearing, the way the wore their hair. I can’t remember right away what I had for dinner yesterday, but I can recite my co-worker’s entire wardrobe, right down to the shoes. Not very useful and terribly distracting.

I can also notice if something in an office was moved or something new is in its place. I once saw a therapist who, due to office space, had to see me in a different office EVERY time I went to see her. The changes were so extreme that I had to stop seeing her, it was way too much overload.

So, I told this doctor all of these things. She asked me to walk across the room, she examined my hands and my feet (I have very long fingers and toes, as does my son, which often makes doctors think we have Marfan’s Syndrome). Her questions did not alarm me and it felt good to at last tell someone what it felt like to be me. How in elementary school,  at a birthday party, I told the birthday girl’s mother that her cake was “crummy.” Of course what I meant was “crumbly,” but since I knew that the “b” in the word “crumb” was silent, I thought I was using the adjective correctly! When the girl and her friends cornered me on the playground the next day, I found out I was very wrong… I remember how upset I was, clearly I hadn’t meant any harm.

The doctor said it looked that it certainly looked like Asperger’s Syndrome to her (the same exact diagnosis that was given to my son) and that she felt that on the whole, it seemed like I was doing all right. I had a job, a husband, a child, a house. All the things a “normal” person should have.

In hindsight, I can’t blame her for thinking that my life was going pretty well. But she was not a therapist and I couldn’t tell her what was really going on. I had the diagnosis, which is what I had come for. I thanked her and left.

Getting that diagnosis was an extreme relief to me. Now I could look at the way that I thought, certain obsessions I had and the world around me in a new way. I could look at myself in a new way.

The problem I soon found was that when one is diagnosed with Asperger’s, it’s usually what is considered “autism lite.” Or, to some people, not even really autism at all… which I feel can be a dangerous conclusion because then it leads people diagnosed with Asperger’s to feel that somehow their autism ought to be easier. And this is where it tends to fall apart.

My son can feed himself, but he eats a total of approximately 5 foods. He can dress himself, but he will only wear certain clothes. He can now be in a crowd without wearing headphones, but he will still get agitated if it’s not a situation he feels he can navigate adequately. The more and more I investigate the type of autism that he and I experience, I have come to the conclusion that while autism is indeed a spectrum, any autistic person can move to different points on the spectrum on any given day. Imagine the autism spectrum as being a volume meter and the needle is forever moving between what the neurotypical world considers “high” and “low” functioning.

It is unhelpful to consider those diagnosed with Asperger’s to always have their needle in the high functioning zone just as it is unfair to insist those diagnosed with autism must always have their needle in the be in the low functioning zone.

I have a lot of other thoughts on functioning and so forth, but I’m going to stick just to the facts of my story for now. Please feel free to share thoughts or links to your own diagnosis story; I’m always curious to read them. If you are not autistic and have a loved one that is, as always please feel free to comment as well.