I thought I had a handle on this shit, I really did. I thought I understood invisible illness, complex pain, mental health and how to navigate a world around it.
But like Jon Snow, it appears that I know nothing.
The last few weeks have shown me that what I thought I knew was only the tip of the iceberg. After living with my partner ‘A’ for 22 years, raising two healthy and happy kids and surviving my own depression I now discover – alongside himself – that he is not simply a shy, anxious, unsociable man, but he is in fact living with ASD (Autistic Spectrum Disorder)
The way in which he discovered this was after some promoting from myself, he took what is commonly called an AQ50 online test and scored 50/50. When we took this information to his GP she nodded sagely and did not seem at all fazed by the information – I guess other people spotted it years ago, I only wonder why no one though to mention it.
So why is this so shocking? Well firstly he is 45 years old and has lived a whole life of struggle and fear, masked by a host of other complications – the subject of this blog post.
You see A was in a severe accident aged 15 where he was hit by a car travelling at 70mph and got pretty smashed up. Hence his life thereon was marred by chronic pain. He also is adopted and struggled through his adoptive parents divorce and other sundry familial struggles, like most people. But it all adds up and in the end masks the true picture.
So many life experiences can be mistaken as the cause for a symptom – and not only did no-one recognise his dyslexia (which he recently realised he has – thank you internet!) but it also masked his autism. He is high functioning and very very bright but struggles to understand other peoples behaviour, takes everything literally, cannot discern ‘inferred’ speech from ‘statements’ and is emotionally challenged.
I have always laughingly called him an alien – and now I realise how right I was. The more we learn the deeper down the rabbit hole we fall and as a result we are now deep in grief for all that he suffered, for the lack of understanding, for the child who felt so lost, so lonely and so isolated and also filled with fear and confusion about how to navigate the future.
Personally I am exhausted being the only source of support, coaching and problem solving in his life, and simultaneously renegotiating the boundaries around our relationship to better serve my needs. Phew! I need a holiday. And am super grateful for my wonderful friends who are holding space for me, loving me, honouring me and accepting me in all ways. You are invaluable to me. Thank you.