"You knock on the door but there is no one there to open it"

The process and waiting times are a major challenge to diagnosis, yet you are told that you must go through the Trust diagnostic service for an 'official' diagnosis.

I was diagnosed with ASC by a BHSCT doctor a number of years ago. I later discovered and attended a Recovery College course about understanding this diagnosis (I don't believe it is run any more). I was never signposted to this by any health or social care professional.

At this course they referred to all these services and potential support, which I had never heard of before, but no information was provided on how to access. I spoke to the facilitator and mentioned my diagnosis and enquired about this. Instead of the expected signposting, I felt belittled and told that, as they didn't make the diagnosis, I didn't actually have one and that it doesn't count unless the BHSCT Adult Autism Diagnostic Service say so. 

Future plans

I discussed this with my own doctor who also was not aware of this. Finally they were able to refer to me to this service, with an expected 3 year waiting time. In the interim I tried to study and investigate what I could and self support where I could. The only service available to me was the Belfast Adult Autism Advice Service, which was only open very limited and inconvenient hours. When I was finally able to make contact, the staff were friendly and wanted to help but they were limited but did arrange for someone from the Adult Autism Service to contact me....which didn't happen.

When I finally reached the hallowed doors of the Diagnostic Service years later, the experience was fantastic, quick, and carried out by a wonderful set of professionals. I got the stamp of approval that, yes, I was autistic....but then that was it. There's your official badge and goodbye.

The detailed report was hard reading and including details of discussions with family/friends who are required to be interviewed. I understand the preference to find out from others how you were growing up or how they perceive you but it is embarrassing and infantilising and has affected my relationship with them. No one wants to read how the people close to you really see you, how things you thought were normal were actually perceived as odd, how they have been amused by your actions and words behind your back. It resulted in further anxiety and isolation.

While the diagnostic process itself was rapid and done with care, there is no support given to help you understand what is in the report, or to process both it and the diagnosis itself, The Adult Autism Service seems to be solely a diagnostic service. Once you have it there is nothing. You are left to try to process it, questioning everything you have ever done, querying whether things have happened in your life because others see the world differently but you never knew. And now you do know, how do you manage that knowledge as well as move forwards. There are many days I wish I hadn't had formal diagnosis through this service. Until then I was mostly blissfully unaware of how the world saw me and how I had got the world all wrong. All it did was to pop that protective bubble and left me alone and in turmoil. 

Through my own research I discovered the BHSCT Adult Autism pathway. It temporarily filled me with some hope but I soon found out that is a work of aspiration at best. The paths it refers to don't seem to actually exist. You knock on the door but there is no one there to open it.

This is the best way I can describe it...Imagine you have spent your whole life thinking you were speaking the same language as everyone else. Only to discover that you never actually were. Yet no one either can, nor wants to, try to speak your language. And no translation exists for you to try to learn their language.

You are even more alone than you were before. You wish that you had never known that you were speaking another language your whole life... because it was easier then.

Seeing the whole me