My husband and I met on a Forest School training course in 2009, it was a 5 day residential course and around mid week his nickname for me (Scuffer) was coined. We were all sent back into the classroom, everyone was seated except me and the tutor said something about me needing to hurry because everyone was waiting. I had my boots undone, but still on and I very slowly and deliberately scuffed across the classroom to my seat on the far side. Gareth, having worked with autistic young people for years, decided due to this and other moments spent with me that I probably had Pathological Demand Avoidance (PDA) but didn’t share his thoughts with me.
Forward on a few years and we had one child with a brain condition which presents very similarly to autism and another child waiting to be assessed. I started to research autism and how it presents, we home educate our 5 younger children and I wanted to be prepared to support them as best I could. As I was reading I started to realise that so much of it made sense to me and my experience and I started to question whether I could be autistic. When I raised my thoughts with my husband he felt it made perfect sense to him.
I stumbled across the AQ-50 test online and decided to take it, it’s a rather blunt tool, but useful as an initial indicator of autism. I scored highly on the test and decided to speak to my GP about being assessed. After a little pushing they agreed to refer me, contact was made, I had to take the AQ-50 test again for them and they agreed that I should be assessed. The waiting list for adult assessment where I live is around 2 years. I contacted the university I attend to ask if any support was available and they said that until I had a diagnosis they couldn’t help, however I could be assessed via the university if I paid a small amount towards the assessment.
Two months later it was time for my assessment. By this time I’d already made some changes to my life, I’d decided that it didn’t actually matter is I was autistic or not, but if I treated myself as if was and gave myself a bit of a break with things I find difficult that could only be a good thing. I’d taken the AQ-50 again for the university, they spoke to my mum to get some background on my childhood and it was time for me to go in for the assessment.
The assessment appointment is one of the most exhausting things I’ve done, it was 3 hours long and necessarily went into lots of detail about my life and experience. There is strict criteria to fit in order to be diagnosed as autistic and the psychologist had to be sure that I did fit them.
Even though I had realised I was probably autistic when it got to the end of the appointment and was told that she felt confident to give me an official diagnosis I was completely floored. I didn’t know what to say to her, having talked for 3 hours I was exhausted, rung out and ready to get home. I remember leaving them room and thinking surely that can’t be it? They can’t just send me off with this information and no way to process it.
I was surprised at how hard I found my diagnosis, for a few weeks I was in shock and seemed to be “extra” autistic. Someone had warned me it might happen, it’s like all the things I’d been holding in were out. Even now a few months later I find myself examining my life through this new lens of autism. My experiences are changed because I can see how they are shaped by autism.
There’s also an adjustment to having a diagnosis which is considered as a disability, I can see the many strengths autism gives me, but I’m also aware of the difficulties I face day to day. It does help knowing why, it just feels strange.
I’m still adjusting and learning more about myself all the time, I am so glad I got assessed, so much about my life makes sense at last. I also manage my time much better and forgive myself for needing a quiet day or two after being sociable. It’s a learning experience and I’m enjoying it as much as I’m finding it hard.