A note on language: I wrote these posts in 2016, when I was still uneducated about problematic language and functioning labels. I’ve chosen to republish these posts exactly as I first wrote them, unedited, and therefore you will notice that I use vocabulary I no longer choose to use, including ‘Asperger’s’ and ‘ASD’. I prefer the term ‘autism’ these days, and that is the term you’ll see in more recent posts. You may also spot some person-first language; these days I’m more likely to say ‘autistic person’ than ‘person with autism’.
It was pretty anticlimactic in the end… a letter in the post summarising the doctor’s observations and concluding with the words “I feel that a diagnosis of an Autism Spectrum Disorder, on the milder end of the spectrum, is justified”. This landed on the doormat back in June. It’s taken me quite some time to sit down and share this with you, partly because it can take me a while to process new information, work out how I feel about it and put my thoughts into anything like adequate words.
So, this is how I feel about my Asperger’s diagnosis…
I think that mainly what I feel is a sense of both relief and vindication: what I have strongly suspected for the last twelve years I now know to be the case. I don’t have to battle on alone, or go private to get a diagnosis: I have my confirmation, given by a medical professional. (For anyone who might have been critical of going private as a next step, imagine if I’d been convinced I had the symptoms of a physical illness, but my doctor disagreed. I’d definitely get a second opinion. I know friends who have experienced this situation and been proved right in the end. So yes, if this doctor had said she didn’t think I had Asperger’s I would still have pursued it.)
I have an explanation (for so many things.)
The reason I have identified with almost everything I’ve ever read by (and about) women with Asperger’s is because this is my experience, too. I have an explanation for my social anxiety, social fatigue, sensory overload, information processing deficit and recurring depression. I know why I get so easily overwhelmed by my emotions, why I sometimes have meltdowns when I’m hungry, stressed or overloaded and why I so often have to leave the party early. My diagnosis is obviously not going to make any of these things go away, but it is a huge comfort to know that, while definitely not an excuse for ‘bad’ behaviour, at least there is a rational explanation for some of the things I’ve never felt I could help. And I should even be able to access support to help with them, too, now I have a diagnosis.
I can be myself around people a bit more
Since ‘coming out’ to you about my self-identification with Asperger’s back in January 2016 I have felt so supported, loved and heard. Having a formal diagnosis makes it all feel a bit more ‘real’; I can now say I have Asperger’s and it is a confirmed fact, not just something I feel to be true. It has changed my life immeasurably just to know that people knew that I was pursuing a diagnosis. I can be myself around people more: if I have to cancel a social plan, leave early or ‘tune out’ for a while, I no longer feel as anxious about it as I once did. I can be myself and take care of myself when I need to, which is a precious thing.
It’s a bit of an anti-climax
It’s funny, but the diagnosis itself almost feels beside the point to me at this stage – the long process of gradually realising that I have Asperger’s, admitting it to myself, trying to find relevant information, coming to terms with the knowledge, sharing it and seeking a diagnosis has been what has really made such a massive difference to me. Those bald words on a printed A4 sheet are a much-needed confirmation of what I have known for years; but they do not really add anything.
I’m not sure how I feel about the phrase ‘milder end of the spectrum’
Like ‘high-functioning’, it feels dismissive, and doesn’t acknowledge the ways in which being even at that ‘milder’ end can make life pretty difficult at times. In fact, precisely because I present and act ‘normal’ (neurotypical) enough most of the time, I create expectations in others that I’m then compelled to fulfil. It’s what made my teaching job an impossibility in the end: I could no longer keep up the pretence of confidence, competence and calm that was an all-too-thin veneer over my constant internal struggle.
I’ve been overwhelmed by the support I’ve received…
I saw a post-diagnostic counsellor today (she was awesome!) and she told me I was very lucky to have so many understanding, supportive friends. She’s right. I really didn’t need her to tell me that, but the reminder made me think of all those undergoing this process who might not have the support network I do. I am so grateful to all my friends, but especially to those who took the time to email me or to write lovely, heartfelt comments on my Facebook posts. It was so appreciated.
…and by the effect this blog has had on others.
The most unexpected (and humbling) part of writing and sharing this experience has been the people – people I know – who have contacted me to tell me that they, too, have long suspected they have Asperger’s, and who have pursued their own diagnosis since reading about my experiences. I started this blog mainly for me, to help me organise my thoughts, figure out my feelings and navigate the diagnostic process – but it turns out that its best outcome has been for others, which is just the best feeling.
So what happens next?
Armed with referrals to groups, researchers and networks, my next step is to explore the support available to me, continue to process my diagnosis and work out what it means for my life, future and relationships. It will be interesting to see what I will learn next about ASD, and what impact this next stage might have on me.