I started working with Autistic and otherwise neurodivergent and disabled young people when I was about 23. When I started doing home visits with families I kept thinking “I do that. I completely and utterly understand what you mean when you say something utterly outrageous, or what other people might see as peculiar.” And the more I got to know the young people I was working with, I just knew I was getting closer to unlocking a huge part of myself (see My Autistic Diagnosis Story for more).
I’ve always felt an outsider looking in, as if a massive piece of information has completely and utterly bypassed me. Some element of language or something that just doesn’t quite click with me. I have thought about this for years and it took me a further two and a half years for me to get a formal diagnosis.
I got my Autistic diagnosis when I was 30, what I didn’t realise at the time is that they can also diagnose you with other things whilst you’re there. So, I came out thinking I will probably get an autism diagnosis and I actually came out with being autistic and OCD. I didn’t realise they were doing a two-for-one deal!
So, after being told information which didn’t surprise me but was still intense (my being Autistic), and information about my mental health which I have struggled with since I was a child, I had nowhere to go with this information. It has taken me 25 years to realise that I’m autistic, put a word to it, get a diagnosis, and then nothing. No support. Nothing afterwards to get involved with. My OCD is all over my medical records, so too are my depression, anxiety and non-specified mood disorders. I have these labels and they help with some aspects of understanding myself but there is no help out there for people like me.
The NHS mental health services are woefully underfunded and oversubscribed. Many practitioners also assume that you’re Autistic and therefore of course you have mental health difficulties (which we’re not going to help with).
I know more elements of myself now than I ever have but with this information comes the stark reality that myself, and others like me, shall never get adequate support. We shall always be left adrift. People who cannot access formal diagnosis are doubly left to their own devices and it’s simply not good enough.
2 responses to “Autistic and OCD: left adrift”
Yesterday I had dinner with a girlfriend who was diagnosed very young. She navigates smoothly through situations I, diagnosed at 43, can only vaguely imagine ever fathom how to navigate. In this side of the ocean, too, the support is not adequate to the need. Not nearly.
We all experience and manage OCD differently. Support for mental health in many places is poor and so many of us are just left to get on with it 🙁