My Autism Story Part One. The Road to Diagnosis.


I was 11 years old when I first remember not being able to get out of the door. I physically couldn't bring myself to leave the safe environment I had built at home. The comforting predictability of my bedroom. Of course, at this time I didn't know it was the comfort of routine and predictability that I craved, all I knew, and all I could tell a therapist was that I couldn't get out the door.

Over the next 10 years every avenue was explored. I'd make temporary progress but still end up back where I began. Anxious, hating myself and still not being able to get out the door. Was I being bullied at school? Yes, but it wasn't fear that was stopping me from going outside. Was I suffering with abandonment issues because of the situation with my father? Not really. Did I have crippling social anxiety and terrifying thoughts of embarrassing myself. Again, no, I was quite oblivious to the opinions of others, and I still am half of the time. Round in circles, speculative diagnosis after speculative diagnosis. Nothing set in stone. No solid ground to work upon. Just 'maybe it's this' for ten. whole. years.

It was 6 days after my 21st birthday that I received my official diagnosis. The referral came about after spending two years working with a social worker in a counselling setting. We'd covered the same ground, walked the same circles but some of the things I'd said had caught her attention. The way I described washing my hair to a set rhythm and amount of rinses, how i'd explained my reaction to a social interaction as involving a book in my head that I have to refer to find the right answer, how hello isn't instinctive to me. We discussed how upset I would get if my mum took an unexpected day off work, how I would become distressed if tea wasn't ready at the same time everyday. She noted my inability to understand my mothers point of view. My obsessive hobbies that became intense, then overwhelming. She saw through my past, my psychological 'issues' and focused on the behaviours that kept repeating themselves. As I look back on that now I find it hard to believe a diagnosis took so long.

The first step of the journey had taken ten years. My self esteem had been damaged beyond repair. The coping mechanisms i'd adapted to deal with my undiagnosed autism had become counterproductive and dangerous. I'd lost jobs, friends, relationships and almost my family. We were hanging on by a thread. Diagnosis wasn't a miracle cure at all. In fact at first it was a curse, a burden, a label but it was a necessary evil to allow me to piece myself together. I needed that diagnosis to open the next pathway...



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Thank you for supporting me on my journey to raise awareness about mothers on the autistic spectrum. We do exist, we just need people to know we do!