Getting Diagnosed: Anna’s Story

This month, our trainers will be sharing their experiences of being diagnosed with Asperger’s Syndrome.  Here is Anna’s Story:

I was diagnosed with Asperger’s when I was 21 years old. I was completely unaware of my difficulties until I was a teenager, and when I became aware, I initially blamed my parents for my problems with making friends. I told them that if they had taken me to more after school clubs then I would not have any problems. I also worried that I might have a personality disorder because I began to understand that I struggled with empathy and could be incredibly indifferent to other people’s feelings. If things did not go to plan or I wanted to do something but was told I could not do it, I would have an explosive outburst, just like a toddler. But I was not a toddler, I was on the cusp of adulthood, and I knew that I was emotionally immature, without knowing why. This lack of knowledge about my condition affected my confidence and made me feel that I was ineffective as a human being.

A Temporary Situation

As a teenager a part of me was convinced that my problems were temporary, and that they would all disappear by the time I was 20.  But as the years went by my problems did not go away. My parents hinted in not so subtle ways that I was behaving “like an autistic person”, and that I might have something that my dad jokingly called “Asparagus syndrome”. I did not find this remotely funny, and I really felt as though my parents were insulting me. I told them that everything was fine, I did not care that I had no friends, and that my obsession with the actress Kate Winslet was a good enough substitute for a social life.

Against the odds I managed to go to my local University to study History. No-one expected me to do well academically when I was a hopelessly disorganized 15 year old with a messy backpack and no concept of why doing homework was important. But I surpassed everyone’s expectations, and when I did well at University and achieved a 2.1 History degree, I finally felt as though I was reasonably intelligent. Because I went through school with no diagnosis, I blamed my learning difficulties on stupidity and mental slowness.

Admitting My Difficulties

Eventually my parents persuaded me to seek help after I had a particularly explosive outburst. I was reluctant to admit to my parents that I had difficulties because it felt like an admission of weakness, but I could no longer pretend that nothing was wrong.

Initially I was diagnosed with OCD.  I saw a Psychologist for weekly sessions of Cognitive Behavioural Therapy, but I instinctively knew that my problems ran far deeper than OCD. I knew that I had struggled to relate to people all my life. I also knew that I was not like other people, that I found certain daily living skills very challenging, but I did not know why I still could not fold clothes, for example.

Out of curiosity I googled Asperger’s, and was amazed to discover that I had nearly every single trait. Everything began to make sense. I went to my mum and told her that I thought I might have Asperger’s, and my mum wholeheartedly agreed. My parents said they would help me to get a proper assessment. At this stage, without a diagnosis, there was still a lot of doubt and speculation. I had finally understood that my problems were definitely developmental, but I was aware that Asperger’s was just one possible explanation. I could not fully relax until I had the assessment and got a definitive answer. All I wanted was an explanation for my difficulties, and I did not care what label I was given so long as it was one hundred percent accurate and correct. It was a question of identity as much as anything else.

Getting Assessed

The GP referred me on request to a psychiatrist. This doctor agreed to refer me to the adult autism team. I then had to wait a whole year before I was seen by a clinical nurse specialist who visited the house and interviewed myself and my parents.  He chatted to us for 4 hours in the living room, and I felt quite relaxed because I was finally speaking to someone who seemed to understand my issues. The assessor was very nice and thorough. He had no doubt that I was autistic at the end of that first meeting, but he visited us again to complete the assessment. Because he had no doubts, I did not need to have a further assessment with the multi-disciplinary team, but I insisted that I be seen by the whole team. Without seeing the whole team, my doubts would not be fully assuaged. A part of me was not convinced that the diagnosis was fail-proof because there is no biological marker for autism. I was therefore referred to see a psychologist, psychiatrist and speech and language therapist. On the day I was anxious but excited at the same time. At the clinic I spoke to the psychiatrist on my own while my parents chatted to the other clinicians in a separate room. Then the clinicians went away to discuss their findings, and we finally all sat round a table and I was given the definitive result. The psychiatrist said, “You clearly have autism”. I felt so pleased to finally have a name for my problems; it was as though an almighty weight had been lifted from my shoulders and a gaping hole in my psyche had been filled. I stopped feeling so alone because I knew that there were others out there like me, and I could reach out to other people on Internet forums. A new chapter in my life had opened, and everything started to make more sense. Getting a diagnosis of Asperger’s was one of the best days in my life.

 

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