Officially Square

I have been asked to write a post about how I came to be diagnosed with Asperger's Syndrome. This seems like a pretty good idea: it could help many people in the same situation as I was in a few years ago. It could also help to explain to those who don't see my condition a bit about how I came to see it, what effect this had and why it's important to me.

What made you think you might be on the autistic spectrum?

It's hard to remember back to the very first time I thought about it. It was one of those things that pops up every now and then and rings a bell (metaphorically, otherwise that would be really weird) in your mind. I'd heard once or twice about it before but I think probably the first time I seriously considered the possibility was in my final year at University.

I took a module in Music Therapy and one of the key groups therapists work with is people with ASC (autism spectrum conditions). Well, when our tutor gave the basic description the cogs began to whirr. When I heard about Asperger's, things really began to add up.

Over the following months I began to read quite a lot around the area, finding out about how females can present quite differently from males and tend to be under-diagnosed, how things look slightly different in very highly functioning people, and reading a lot of first-hand accounts from people with autism. It was probably these and the new information about females that really started to convince me, as memories from my past 20 years of life came back and began to fall into place.

Because of certain things going on in my life at the time and certain struggles past and present, it became important to me to find out whether this information was applicable to me. I read a couple of books and began to note down the parts that I felt described me. There were a lot. It all finally seemed to add up.


Why did you seek a diagnosis when you've got this far?

Contrary to some appearances I didn't get this far without any issues or struggles. I was never one of the other children. I found many methods to pretend, to mask, to look like everyone else, but I knew I was different. It was hard work to be included by a few. But I never told anyone, I just worked and never really questioned why I was different. I mean, I wondered why other people were so weird, but I never wanted to be like them, just to not be an outcast, and to have one or two people I enjoyed spending time with.

So when I came across all this information that told my life story for me and made sense of everything, it was something of a relief. I could have just self-diagnosed, but a) I'm the kind of person that has to have things set in stone for them to be true and depended on and b) people wouldn't believe a word of it if I had used it to try and explain myself. I had got very good at pretending, and people just don't take self-diagnosis seriously.

The final reason was that I had (foolishly) mentioned it as a possibility to someone to explain things that had been going on in a situation in my life at the time, and they used it strongly against me.

After all those things, I just had to know, really.


What was the process?

I asked a couple of family members what they thought first of all. They dismissed it pretty quickly, explaining that we all have various traits and the whole of humanity is a spectrum, but it doesn't mean you're autistic. Basically, very nice dear, don't be so daft. So that put me off for a while. I put it under my hat.

But my hat is very near my brain, and I didn't forget about it. When I moved out, I collected all the writings I had made from quotes from books and notes about my experiences and took myself in trepidation to the GP without telling a soul. I put a note on the appointment form about what it was for, but she made me tell her anyway. She seemed to think there was something in it and secured the funding to send me to Sheffield Asperger Syndrome Service for Assessment, which happened about 9 months after the initial appointment.

I was sent some questionnaires for family to fill in, so finally braved telling my family what I was doing and got 2 of them to fill one in. Once they realised how important it was to me, I think they were mostly humouring me. My parent's didn't have much on, but my sister, with whom I had most recently been living, had noticed more.

These were sent in prior to the appointment so when I went, the clinical psychologist had read all my own writings, and the two family questionnaires. We talked for about an hour or two I think, and then she told me she had heard enough to be happy that a diagnosis of Asperger's was accurate.

There was some information about services, support, groups etc and a follow up appointment (up to 3 were offered if funding could be secured I think) and a few weeks later I received a full write up of her findings with my official diagnosis.


Was it worth it?

For me, I have to say yes. It has given me peace and understanding about my past and helps me now to understand myself. I can work on discovering how to optimise what I am good at and work on what I struggle with. I can learn to spot warning signs of oncoming shutdowns. I can find methods of coping and helping myself and I can help other people understand how I work, because I am pretty weird in a lot of ways.

Having said all that, I have told very few people of my diagnosis. Because I have developed such effective masking strategies, it's not important for most of them to know, and I like to be treated as me, rather than 'someone with Asperger's'. Also because of my high functioning and masking, it's not worth having to explain and prove myself to those who would disbelieve me, so I just don't tell them. (Of course I do take it as a compliment to my strategies if they don't believe me!)

The main purpose to me of my diagnosis to for my own peace and understanding and that of those close to me, so relationships can be optimised through understanding.


I hope that helps to explain the process to those who are wondering. As always, I don't know what people want to know, so please do ask if you have questions. Maybe there are things you would like more specific detail on as I have been fairly general so as to avoid a mega-essay! Comments always welcome!