My Autism Diagnosis Story

The fact that I was rediagnosed autisitc, still feels unreal. As I read the report this evening, self-doubt kicked in. The psychologist who diagnosed me, didn’t feel a full developmental interview with my parents was needed, as I had had that done already in 2007 and there were enough reasons to diagnose autism based on the questionnaires my parents filled out. The report from the 2007 diagnostic assessment is gone though, which is one of the reasons for my soon-to-be former psychologist to have removed this diagnosis. I wonder whether my psychiatrist at the community treatment team will acknowledge this diagnosis. I hope she will.

I’m also not sure whether or how to break the news to the Dutch autistic community. As I mentioned on Monday, I was kicked off one autism forum for good, but I am still in others where I’m faced with suspicion. The international community is a lot more accepting.

In honor of my rediagnosis, I am starting the 30 days of autism acceptance, which I found out about last month. It’s mostly on Tumblr, but I can barely use that. The first question asks me to introduce myself, so here goes.

Hi, I’m Astrid. I am 30-years-old – the psych report says I look older,argh – and I live in the Netherlands. I was first formally diagnosed withautism in 2007 and last rediagnosed a few days ago.

The first time I became aware of autism, was sometime in 1998, when its genetic origin was discussed in a news program. Something clicked, but I
didn’t immediately think I’m autistic. I was only eleven or twelve-years-old,
after all.

Then, in June of 2002, my father stormed into my room in the middle of the night. “Are you autistic or something?” he yelled over my loud music. In hindsight, this was the weirdest reason to think a teen is autistic that I’ve ever heard of. After all, having loud music on late at night is pretty normal teenage defiance.

Somehow, something clicked again, and this time I had the Internet and could google autism. For the next nearly two years, I was obsessed with the idea that I may have Asperger’s Syndrome. Asperger’s hadn’t been merged with the other autistic spectrum disorders yet, and to be honest I was quite prejudiced against people with “classic” autism.

In April of 2004, it was again a comment by my father that made me stop thinking I’m an Aspie. There was a newspaper article about highly sensitive persons and the controversy around labeling pretty much everyone. My father offhandly commented that I’m an “asparagus addict”. My high school tutor, who knew about my self-diagnosis, had told my parents I was a “hypochondriac” for it and my father agreed. My mother chimed in that she’d googled Asperger’s and was sure I didn’t have it. That was the end of my “asparagus addiction” for over 2 1/2 years.

In late 2006, my support wroker at the training hoem for the disabled I resided at informed me they were sending me to mental health for an autism assessment. They had already scheduled the first appointment, in fact. I was studying psychology at college at the time and I thought I was doing a good job of it. I couldn’t, in my prejudiced mind, reconcile that with an autism diagnosis. Several months later, once diagnosed, I was happy for it. After all, I’d by this time been quite disappointed on my path in college and my diagnosis helped me get accommodations I wouldn’t otherwise have gotten. It also helped me delay my being kicked out of the training home.

I looked over all my previous diagnoses that were summarized in the report I read this evening. I was diagnosed with an autism spectrum disorder at least three times and that doesn’t include the early 2007 diagnosis. After all, the report on that one may’ve disappeared too and I forgot that it may be significant, as it was the only time a psychiatrist diagnosed me. Besides, it was the same mental health agency that my psychiatrist in the community treatment team is part of. If she decides not to acknowledge my rediagnosis this year, I may have to get her to retrieve what’s left of those records.

Mummy Times Two
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4 thoughts on “My Autism Diagnosis Story

  1. I’m sorry you’ve had such a difficult time. It’s so unfair that the system is often stacked against those it’s most meant to help. I’m glad you’ve found acceptance in the international autism community. Thank you for sharing your story with us at #PosrsFromTheHeart I look forward to reading the rest of your challenge.

    Liked by 1 person

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