Discovery to Diagnosis
After about 10 days of intensely researching ASDs, I decided to get some other opinions on the possibility that I was on the spectrum. The reactions were mixed.
- “you can’t have Asperger’s because there’s someone in our office who has it and she’s nothing like you”
- “Are you going to get yourself diagnosed?” …Sneer
- Total disinterest to the extent that I genuinely wondered if she’d even heard what I’d said
For once, I didn’t know what to do. At times I was 99.9% sure that I was autistic and at other times, the whole idea seemed very unlikely.
I carried on researching in ASDs in secret for over a year. I kept my cursor on top of the ‘X’ at all times, so I could click it and close the page as soon as I heard someone approaching. My browsing history was always cleared after every session. I searched autism related news on my phone, making sure to change the search to ‘kittens’ when I’d finished. Books were read in private and hidden.
I would wake up in the middle of the night, lie motionless and think for hours. I re-evaluated the evidence for hours, analyzing events and conversations from the past to see whether they presented evidence for or against autism.
Eventually I realized that I had to get a formal diagnostic assessment – I had to know for sure. My only living parent was 78 years old and I have no older siblings who could have provided details about my early childhood. I was concerned that without testimony from someone who knew me as a small child, I could end up in a situation where I could never know one way or the other.
It could no longer remain a secret. I had to tell my partner. It took me three attempts to get through to him.
1) He grunted and carried on stroking the cat
2) He told me that I couldn’t be autistic because all autistic people are really good at drawing and he knows this because he once saw a documentary on TV about an autistic boy who was really good at drawing.
3) I dragged him upstairs and shoved a copy of “List of Female Asperger’s Syndrome Traits” by Rudy Simone in his face, with the relevant sections highlighted in fluorescent green. He went rather quiet for a while and then said that he agreed with me.
The scary GP appointment went rather well. I wrote a list of the reasons why I thought I was autistic and another one explaining what effect I believed it had had on my life. For once in my life, I had been completely honest. It had become so natural to put a positive spin on the facts and to make excuses for certain aspects of my life, that seeing it spelled out in black and white was quite a shock.
- The fact that I have a post-graduate degree, but the only jobs I have been able to get are very low paid ones through agencies where there is no formal job interview or ones when I know someone who is already employed there and they have put in a good word for me.
- The fact that I feel uncomfortable in the presence of other people, even when I know them quite well.
- The fact that I have existed on the periphery of various social groups all my life, pretending that they were my friends, but knowing in my heart that they were only tolerating me.
- The fact that I am kind hearted, generous, helpful, reliable, caring, punctual and always remember people’s birthdays and they still don’t like me.
- The fact that I don’t feel like a real/proper person, more like an imposter that has to hide their real feelings at all times or people will find out.
- The fact that when I go out in public, I feel like I’m just floating around like a ghost. I feel unreal and different from the other people I see.
- The fact that most social situations bore me and make me feel uncomfortable and I have to escape at periodic intervals or I start to feel a bit strange.
- The fact that I have a number of intense interests, my ability to hyperfocus and lifelong love of learning.
- The fact that I have to cut the tags out of my clothes and can only use the white fabric conditioner with the baby on the front.
- The fact that I bite my nails and compulsively flick the ends of my fingers.
I won’t bore you with the rest.
My GP referred me for diagnosis and I was diagnosed using a clinical interview and ADOS-2 test. The clinicians also interviewed my partner and spoke to my mother on the telephone. I was diagnosed on 28th November 2016 with ICD-10 F84.0 “Childhood Autism” aka Classic Autism aka Autism.