This assessment concludes that [Peggy] does have Asperger Syndrome and meets the criteria of the DSM-IV and ICD-10 due to difficulties in: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.
- Social Communication
- Social Interaction
- Flexibility of Thought
- Unusual Sensory Experience
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 :)
