I’ve grown up and ‘functioned’ in society just about right until my late teens when I realise there’s something that’s not quite right. Growing up, I was often labelled as clumsy and forgetful. I couldn’t keep friendships going past certain age. There was only one friend with whom I’ve remained in contact even after moving around. I saw morals/choices as black and white, right and wrong. There was no grey area. I did my fair bit of research, and still couldn’t quite figure out what was missing. One day, I came across Simon Baron-Cohen’s research in Autism and realised I might be on the spectrum. I visited my GP and told them that I’d like to be referred for an assessment. Unfortunately, they dismissed my concerns, told me I might possibly be dyslexic and that ‘there’s no intervention for autism, so a diagnosis for adults is useless’.
Luckily, I had to relocate for a new job and when I found myself struggling again, I visited my GP. I’ve told them of my concerns and that I’d like to be referred for a diagnosis. They completed the short Autism Quotient (AQ) questionnaire with me. After about 15 minutes, he said that I was likely to be on the spectrum and that he will refer me for an official diagnosis.
The Adult Autism Diagnosis team sent me a letter for a family member to complete about my early years. There was also a section where I had to write the difficulties I’d faced growing up such as social interaction and communication difficulties. Waiting period for an autism diagnosis is roughly about 12-18 months, depending on where you live in the UK. It took around 34 weeks (8-9 months) of being on the waiting list before I was invited for an assessment.
I was persistent in telephoning the admin office to see where I was on the waiting list. I would call every other month, to check on how I was getting along on the waiting list. I wanted to know exactly how long it would take before I could get an interview date with the Psychiatrist and Occupational Therapist for my assessment. I had also started a course at university (part of my job) and wanted support from my tutors. They were unable to offer me support unless I could show an official letter of my diagnosis. I made sure that I let the admin office know exactly the things that there changing in my life and why I felt that I needed an assessment as soon as possible. There was a cancellation one day and they invited me for an assessment sometime in the Spring. The appointment was advance enough as to not produce any anxiety in me.
Once I received the location and time of the assessment, I became extremely anxious on the day. I started to worry about whether I was in fact on the spectrum… whether my hunch was wrong. I went to the reception, had my headphones in so that I didn’t feel distracted by the external noise. I arrived 1 hour before my appointment and waited patiently, reading a book.
When the Occupational Therapist and Psychiatrist called me in for the assessment, I stumbled as I rushed to keep up. I went to the assessment room. I was asked about my early childhood, asked to creatively come up with stories… which I struggled with. I had to read a book and apparently later learned that I had missed all the facial expressions and focused mainly on small details and what the book was factually presenting (visually).
It has been a somewhat emotional journey in discovering myself in a new light. I can’t thank the two professionals who have given my diagnosis, especially the occupational therapist who later helped me with my sensory profile.
It’s incredibly difficult for women to get a diagnosis as professionals often dismiss or misdiagnose them with personality disorder. I was lucky enough to have had the experience of two professionals who were accommodating but also asking me the appropriate questions. They also screened me for psychological disorders, suicidal tendencies, whether I was a threat to others or myself. I found that it was structured and helpful, even if nerve wracking.