Happy 6th Birthday!

I realised today that this week marks 6 years since my diagnosis and due to a conversation I had during the week I thought it might be a good opportunity to think and write about what my diagnosis means to me now and how that has changed through the years.

This assessment concludes that [Peggy] does have Asperger Syndrome and meets the criteria of the DSM-IV and ICD-10 due to difficulties in:  

1. Social Communication
2. Social Interaction
3. Flexibility of Thought
4. Unusual Sensory Experience

And there we have it. Just like that, I was autistic. The report was nine pages long, and reflected a little more deeply on the details but that's the bit that says it, that changes my categorisation as a human being.

Of course, it doesn't change who I am and always have been one iota: the sentences following the one above declare that "The information provided by [Peggy] and her family indicate these difficulties have been present from a young age. Over time, she has developed a wide range of impressive coping strategies to manage her difficulties in social communication and interaction - often masking the degree of these difficulties so that others are perhaps unaware of their impact."

I consider myself lucky that the process and the report were smooth for me, and the approach very balanced: both the difficulties and the benefits of being autistic were highlighted and addressed in terms of their pertinence in my own life. Reading stark facts like the quote above can feel jarring, but they were given in a context where care was taken to specify my strengths and potential alongside; a lesson that I hear could be applied elsewhere. I wrote a little about the lead up to my diagnosis and initial reactions in my first ever post on the blog, Officially Square.

That post was written nearly three years after my diagnosis and at that point there were very few people party to that information about me. Three family members, my fiance, two friends (I think... or I may not have told them by then) and two or three colleagues. I didn't publicise my blog in case someone figured out that it was mine. I swore everyone that knew to secrecy.

From this behaviour you would be forgiven for thinking that I was ashamed of my diagnosis. On the contrary, I was hugely relieved and mostly very happy to receive official confirmation of what I had suspected for the previous three years. It made sense of my struggles since childhood (that I had obviously failed to share with anyone because, you know, social communication...), my different experiences of the world and my differing needs. I'm not wrong, I'm just a different kind of person and sometimes I need to live a little differently, and that's just fine. In fact, it's good in many ways. I can understand myself better now, work with my strengths, learn ways to cope with my difficulties (still working on that!!) and explain myself to others with more confidence and accept my differences with self-compassion (sometimes...).

So why was I so adamant that nobody find out? One reason was that I was terrified they wouldn't believe me and would think I was making it up either as an excuse or to gain attention. As pointed out above, I have an impressive array of masking strategies, so to disbelieve my diagnosis is in a way complimentary to my efforts, but it would also greatly invalidate my hard work and times of intense distress. I wasn't confident enough at that point to defend my diagnosis because it still didn't feel quite right that I really qualified to be described by the criteria above. Six years of self-observation leave me rather more convinced. Along with the fact that not a single soul has challenged the diagnosis, though many have shown surprise.

I also worried that people would look at me differently once they knew. To a certain extent this still applies. Perhaps not so much as a worry, but I like to choose when and whether I disclose. I worked for my mask and I usually still use it when I meet people because I don't want their impression of me to be formed by their idea of autism; rather, I want to inform their idea of autism. I am me, and me is autistic, so this is one way autism can look. Not, she is autistic so she must be [insert characteristic/behaviour here].

As time went by and I gradually needed to inform more people (changing jobs was the main catalyst for this) I discovered a pretty much universally positive reaction to disclosure. My first experiences weren't just a happy coincidence, but most people find it interesting and useful to find this out about me (assuming we already have a positive relationship), and it helps them to be considerate of things that I find really difficult. 

So nowadays I don't hide my diagnosis, and I tend to mask less. I don't wander round telling people just for the fun of it and there are still more people who don't know that do know, but I can talk about it as a normal part of conversation and this has been helpful in many ways. I accept myself and my needs because I understand why I am how I am. I am becoming more confident in saying I'm not going to do things because I know they will make me unwell or increase my stress levels, and I don't have to be the same as other people in order to be a worthy member of the human race. If something is bothering me I'm more likely to verbalise that now, and even if it doesn't change the situation it helps my internal state. I will engage is certain regulatory behaviours in some public or social situations because I know those people won't bat an eyelid because they know me (there are many others I still keep private). Because I have shared, my colleagues can help me when I'm in crisis, and they can help prevent me getting to crisis.

Was it worth seeking a diagnosis for something I already pretty much knew? For me, yes. And even more so than at the beginning. Personally (and this is not the same for everyone), I could not have assimilated autism into my understanding of myself without a formal diagnosis. I needed that to begin to accept that I genuinely have a reason for what I now know are my autistic traits. I'm not just wrong or weird (although I am pretty weird!). I can get the support I need at work, which I wouldn't necessarily without a diagnosis. I understand and therefore accept and can help myself so much more than I would be able to without knowing this about myself, and I can help others help me too, and I can broaden their world by exposing them to people whose brains work a bit differently. 

Am I proud of being autistic? Not particularly. Am I ashamed of being autistic? No. I just am. Would I be proud of being 5'7"? Or ashamed of having size 6 feet? These are all just thing about me and knowing about them helps (imagine trying to buy shoes if you didn't know what size your feet were. It would take a lot more effort!).

Happy 6 years.

Please ask if you have questions about my experiences pre- or post-diagnosis - I feel like I haven't quite managed to capture everything here and different nuggets will be helpful to different people at different times :)

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!