I started the Autism Diagnosis Journey three years ago, actually it’s more like four plus now – but I found myself telling the 3 year story so often it’s kind of stuck. (And that’s a whole other blog post). My current conundrum is whether or not to pursue my own diagnosis.
I recently read this piece on The Mighty by John Long who went for his diagnosis at the age of 63. “The why”, for those on the spectrum love “the why”, can be summed up in his definition of what has changed for him “What has changed is that I understand my autism as a different way of being, not a deficit, disorder or disease in search of a cure.” I am with him on that, it’s a way to give “the why” to your way of being. Also his parting line “I’m seriously at risk of being happy for the first time in my life. Not a bad diagnosis at any age.” gives a nod to the big “why” of life – being happy. So do I want or need a diagnosis.
The 4 plus year journey I have been on was for my son and not for me. Throughout this journey I have swam in the sea of ASD information and come to an understanding of the different not less perspective. I have also in my innate understanding of my son’s perspective come to realise my own self diagnosed place on the spectrum. And, yes, I still smile when I think of this realisation because it explains so much of my life until now and it gives me that feeling of happy and authenticity because now I get it – I get who I am.
I have, however, hit a bump in the road. I went in pursuit of “the diagnosis” and was told that the journey I’ve been on would explain my low mood at times, my anxiety, my mixed up sleep pattern and my frustration with the lack of logic to the way things are done in life – but my being able to have a meaningful conversation, to understand the reason someone would ask a question, not needing additional confirmation, means that I am most definitely not on the spectrum. Is it bad that I was disappointed at that outcome. I have read all the literature regarding females on the spectrum being able to mask symptoms and being more difficult to diagnose and I believe that along with my 50 plus years of “normal” living may make the spectrum diagnosis difficult but no less validated.
I know, beyond a shadow of a doubt, that I am on the spectrum, (let me count the ways and line them up in alphabetical order for you (too soon for the jokes!)) what good will a diagnosis do? As John Long put it in his article when describing his thoughts as a parent at a conference passionately spoke about how his world had changed when he realised his son’s diagnosis “All I could think was that the world hadn’t changed for his son any more than it had for me”. What changes will a diagnosis bring? If I’m to be honest, which I invariably am, my son’s actual diagnosis has brought little change to our life. Having a diagnosis does not open any magical doors to additional help or magic answers to make life easier, “normal” is still out there. The main outcome is the validation that we were right we believed him to be on the spectrum and he is. Thank you for telling us what we already knew so many years ago, and had to jump through hoops, be poked prodded and tested to confirm.
I guess what I’m saying is I’m done with the hoop jumping. I know who I am and rather than spend anymore time focusing on the struggles and the negatives the spectrum can bring to my life (as that is where the focus lies if a diagnosis is to be pursued) I’m choosing to focus on the positives, to own my authenticity and advocate for for the “different not less” in this world.
We are all different by design and the sooner that respect for difference can be a main focus in this world the sooner the world will be a better place. It truly is an inside job and one we all need to work on, now.