Now you are autistic, get on with it (alone)!

As I was driving into work today I could feel this sudden gust of anger. I feel like I need to make sense of these feelings and state my absolute disgust with the way the whole diagnosis process went. In fact, I would suggest that it was not only neglectful but emotionally damaging to drop a bombshell onto someone and not offer any follow up support.

Recently I have been taking a trip down memory lane and looking at both my Dyspraxia and Asperger's Syndrome diagnoses reports. It got me thinking about the lack of follow-up that the NHS provided after I had the autism label thrust on me.

So I got the report in the post with a cover letter that also went to my GP. It drew a lot of the material from the report of my earlier privately assessed Dyspraxia diagnosis so some of it was just what was written a few years previous. 

The ASC report made some recommendations along the lines of me seeking out self-help groups and contacting a county-based autism charity that might be able to help me find my way in the world. There was no offers of therapy or opportunities to talk through with anyone about what this meant to me. There was no assistance to explain how this might impact on me as an intellectually high functioning adult who might need some help in the workplace. There was absolutely nothing that I felt I could access. Given that autistic people are known for their difficulties with communication and socialising, I don't think it is helpful to just give me a contact telephone number of a support group. I have no desire to sit in a room with other people with ASC and whinge about the world through my neuro-atypical lens. I wasn't even sure that the people in that support group were similar as me in terms of their independent living. After all, all autistic people are different. I found the whole process demoralising.

I still hadn't at that point fully grasped what autism was but I knew that clever people could get it and it wasn't a requirement to be either dribbly or have super mathematical powers. I just knew what I had gleamed off the internet and figured that might be me. Now some clinician agreed and I was now 'disabled'.

Ten years on and I find I know a lot more about autism and I am still learning. I plan to never stop learning about it. Yet I think if the NHS had given me the opportunity to talk through the diagnosis with someone who understood it and its ramifications, it could have saved me many years of negativity and depression. Due to NHS funding in my area, such support is not offered. I understand it is available under many other NHS trusts. It just depends on where one lives.

I didn't need to spend years feeling like an oddball, someone who was born wrong with a deficit mind, trapped inside an awkwardness holding me back from greater things. And I didn't need to hear people tell me that I don't seem autistic and that I act normal when at the same time all I could think about was to stop the sound of that dog barking.

I needed the opportunity to process the diagnosis in a safe and supportive environment and my NHS trust didn't think this was necessary for me to have it. So today I felt angry because I wasted many years feeling so much pain over my sense of who I was and who I could become, not understanding that the label of autism is only as powerful as the meanings I ascribe to it.

So now? The more I think about autism, the more I realise its just a collection of problems, issues, behaviours and personality features that come under an umbrella term. Not everyone has every one thing and in various severity and it doesn't feel like a death sentence any more.

I shall keep trucking along, learning about it, and finding my way in the world with the usual aim to do as least damage as possible to everything around me. I guess that's the best anyone can do.