Tuesday 11 August 2020

My Autism Diagnosis Journey

This was a post that was requested by one of my subscribers.

Last year I was given my official diagnosis of autism spectrum disorder. Getting my diagnosis felt a bit like parts of me and my life where beginning to fit together (not because, or maybe because, I'm not sure that jigsaw pieces are used to represent autism). Things like how I was as a child sitting under the table in reception class to play and do my work, how I've always been sensitive to sound noises and my preference for little sensory stimulation, how I take everything pretty literally (my year 5 teacher once told me to 'pull my socks up' and I did and the class laughed at me and I couldn't understands what), my preference for routine and difficulties with changes to plans, how I've always struggled socially and never really felt like I fitted in with people around me and a whole host of other things.

For me I don't really see my autism as a diagnosis per se rather I just see it as it is part of who I am as a person; it's just that my brain is wired a little differently to those that aren't autistic.

What is Autism?

"Autism is a lifelong developmental disability that affects how people perceive the world and interact with others. Autistic people see, hear and feel the world differently to other people. If you are autistic you are autistic for life; autism is not an illness or disease and cannot be 'cured'. Often people feel being autistic is a fundamental aspect of their identity." - What is Autism?: National Autistic Society

Getting Diagnosed

Over a long period of time my psychiatrist whilst under adult mental health services took observations of me and any how I was in group settings before he asked me if I would was interested in being referred to the Adult Autism Team.

I discussed it with my Dad and he felt too that I could possibly be on the autistic spectrum so I agreed to be referred to the Adult Autism Team. 

After a long wait I got an appointment with them for them to assess me as to whether it would be beneficial for me to go through to diagnostic process. They then took my case to their team meeting and they decided that they would go ahead with assessing me.

I then met over several sessions with one of their psychologists going through the official diagnostic tests asking me questions about my childhood and how I was as a child and the difficulties I had growing up and how I am now as an adult and the difficulties I still have now. For example ow I don't like to be in social situations, how I find eye contact difficult and how I struggle to read people's body language and tone of voice etc. We also touched on my strengths like my creativity and the things I enjoy doing. There where also some questionnaires that I had to fill out too but the font was too small so the psychologist read the questions out to me.

This was all them taken to their team meeting to discuss the outcomes of my assessment and to assess whether I met the diagnostic criteria for Autistic Spectrum Disorder.

Then last year on the 17th June (my birthday) I had a meeting to talk about the assessment and their discussions and they told me that I did meet the clinical criteria for having autism.

I was asked how I felt about this and I said that it down;t really feel like a 'new' diagnosis as I've always been autistic, it's just that now it's been recognised and named.

Moving forwards

From that point I was allocated a support worker who I meet with at present every other week and out sessions vary, sometimes we just talk other time we have a focus like working on being more assertive or coping with change. 

We also put together a 'My Health Passport' (something I'd recommend people do as it's helped me a lot) it centres around Autism this particular one and it gives all the essential information like your name, date of both, contact details and emergency contact details. I also states about how I communicate and how I would like people to communicate with me, my medication and medical history, how I experience and communicate pain, things that help alleviate my distress when I become overwhelmed among other things.

At the moment we're meeting on Zoom due to the coronavirus but my support worker has said that we can continue to meet over Zoom if I would like to and that helps me out with my physical health too.

Every 6 months I also have an MDT (Multidisciplinary Team) meetings with different people in the Adult Autism Team just to see how things are going.

They also hold social groups every other week alternating between a themed café and a themed forum which everyone under the service can attend.

It does feel good to now have my autism diagnosis as it explains a lot about who I am and how I experience the world and it's enabled me to access and amazing service and I get on well with my support worker too.