One of the things that I have discovered about myself and find the hardest to deal with is that I find it immensely difficult to say anything out loud about the struggles in my head. I have no idea if it’s an autistic thing or a me thing – I guess it’s both. If my brain is trying to process things about me that I don’t understand or which are troubling me or causing me anxiety I just don’t seem to be able to identify who I can talk to, how to start that sort of conversation or, fundamentally, feel that it’s ok to talk to someone about it. I guess that last part is maybe about fear of feeling stupid, that whatever is troubling me is something I should be able to deal with myself – if my head got in to this mess, surely it can get me out again!
During my post diagnosis counselling I was able to write down all the thoughts in my head and tip them out via the iPad to the psychologist. Even then, a lot didn’t make it in to my scribblings. I have no idea why I can’t get thoughts the short distance from my head to my mouth so that someone else can hear them. I’ve described it before as having a safety valve in my head which just seems to lock tight at the thought of sharing what’s going on with me and that feels like the only way I can explain it.
I really want to believe that if I found a way of saying things out loud, I could resolve some of the thoughts that just keep circulating in my head – about not being good enough, about how I struggle with some things that others find easy, some communication issues and ultimately feelings of not wanting to be here.
I was referred by the autism service to the local mental health service due to having ‘normalised’ feelings of not wanting to be here. I knew it would be tough to change therapist – I was just getting used to sharing stuff with someone after about a year – but I was prepared to give it a go and, let’s face it, I didn’t have a choice! Although I felt that I was working towards being able to really open up to someone after over a year, that’s not how services work, when your time is up you’re out or on to the next person.
The mental health assessment didn’t start well. I was asked to fill out a Core score sheet but was watched whilst doing it – even I picked up on how much my body language was screaming anxiety – stupidly, I wasn’t able to answer questions honestly as I felt the need to make things sound better than I felt. I answered all the counsellors questions but nothing was mentioned about the reason for referral – was that normal to just ignore the reason I was here? We agreed a couple of dates to start work (on what, I don’t know) in the New Year.
We spent the whole first session talking about things at home and me being asked questions about autism and my diagnosis. I wasn’t there to improve the counsellors knowledge of autism, I had anticipated a reasonable level of knowledge in order to work with me, it wasn’t my place to deliver on the job training! It was at “ I don’t know if that’s you or autism” that I felt this might not be a beneficial process for me.
I was ill for the second session and it was a struggle to get another appointment. Eventually, a second session still left me wondering what we were doing and where counselling was going (still no mention of the reason for referral or what the aim was) but a third was scheduled. By the third session we’d entered the Covid-19 lockdown so it had become an ultimatum between ‘phone sessions’ or ‘discharge’. I tried one phone session – and discovered there was no way that they were going to work for me to share what was in my head. Would they have helped if I’d had a longer relationship with the counsellor? I don’t think so. I was persuaded to book another call with the counsellor and during that session we talked mostly about work (I work in mental health services) and I asked to be discharged. The counsellor wanted to organise more sessions but I knew it would be a waste of our time. I was asked who I would talk to if I needed to. “No one” I said which didn’t seem to be the answer they were looking for! Eventually I was told I could phone my GP if I needed to speak to someone – I guess they need to give you options but saying that to someone who’s just told you they won’t speak to anyone is not really helpful.
So, back to square one then. Me and the crap in my head just going round and round, over and over. No one to speak to and services that don’t meet my needs. Hopefully, one day I’ll figure it out for myself!
Sooz 