Published on 12, July, 2020
Hello. I'm a 50-year-old single man who's currently in the NHS system waiting for an Asperger's diagnosis. I have some support from the CMH team, but I want to help myself. There is a reason for this. On my third visit with the CMH team, I was told they had some good news. The good news was a letter from the NHS saying that after consideration, I did not qualify for funding to put me forward for tests. "What are you thinking right now?" asked my support worker. I replied that I was thinking about how I could kill myself. A remark that was challenged as reactionary. After 45 minutes of utter despair, the support worker said, a little patronisingly, let's read the letter again - there were just three sentences. At the top of the letter were three numbers - an internal reference, a case number and my DOB. The DOB was wrong. It was not my letter. Two agonising hours later, I was called to be told they had made a mistake and I did qualify for funding. I have major issues of trust as it is. This caved me in. This is why I want to try to help myself. I'm in a queue, but I don't know how long it'll take. Are there any videos, or articles I can read that can help me accept my situation? Where can I turn to for advice?
Welcome,
You're not alone - I completed the evaluation process that you're lined up for only a couple of weeks ago, at 45 years old. Prior to that, I had been rejected on financial grounds twice! (and I'm still waiting for a written copy of my report two weeks later! Grrr)
I had a very good experience going through the assessment - though it must be noted that services vary a lot from place to place. However, I would say that I have learned a lot more about my condition through internet forums such as this one. You can't beat hearing advice "from the horses mouth" - doctors can give syptoms all the pretty names they like, but most of them have never actually "lived" the experience. I'd encourage you to check out other forums for autistic folks - most have openly accessible areas where you can "lurk" before deciding which ones you would like to join.
Having read other peole's experience of autism beforehan also cushioned the blow of the diagnosis - your idea of going in 'forewarned' and 'forearmed' is a good one. I am still reeling from it somewhat - but in a positive sense of solving puzzles that have been with me a long time.
Best wishes.
Hi theretherebear, welcome to the forum. That is a really bad thing to be subjected to, I also feel sorry for the poor soul who may have got your letter, to discover they actually don't have funding.
I am approaching 50 this year, and was diagnosed in August last year. The whole thing took almost exactly one year for me, but my autism diagnostic team have told me they have more referals and it is longer now.
Recently had my exit/handover interview, and frustrated that they can give me a resonable estimate of how long it can take, but when I enquired during the process, I was left in the dark.
I can relate to the feelings you had reading the letter, anyone would have a bad reaction to the news, but our anxiety levels start really high and you quickly fear the worst is actually happening now. It takes some considerable emotional effort to get through and "deal" with this compared to an NT person. I really hate the normal reaction is people say dont have to worry so much, but I feel this is a natural reaction for us. Understanding that has made things a little easier to deal with for me, I still get the high levels of anxiety.
This forum is a great resource and has really helped me, hearing the experiences of others and relating that to my own life experience. I am rediscovering my past from a different viewpoint, some of this too is hard going for me.
Random
Hello Recombinantsocks. Thanks for making me feel included. I've been a writer for a long time and your language tells me I can trust you. I'm at the point where the diagnosis will just be a confirmation to be honest. I've done lots of research over the past four years or so. In the past few months I feel as if I have been given a map showing me where I've been and where I can go next. It's the direction I need to work on. I do feel quite positive, but a bit apprehensive. I've made a lot of mistakes in the past and I've been homeless for seven months. It's not grim! I have a workshop where I can keep my 'life' and I sleep in a camper van outside the workshop. I do have a part-time job working for a friend who understands me. I'm hungry to exploit my condition, if you know what I mean? It's controlled my life for 50 years and now I want to use it to help me... Thank you again. A lovely boost to my confidence!
Welcome to the forum.
That just about takes the biscuit for the most appalling treatment! I hope you can move on and put it behind you though? People with autism often have bad experiences because the system isn't good at dealing with us and we aren't good at negotiating and understanding how the system works and how to deal with the people involved. There are loads of people who have been through it and come out of the other end so please stick around and ask questions and join in the discussions.
You are in the right place to get some support and understanding though. There are quite a few older and late diagnosed adults like me here who will try and keep you positive and looking forwards. I think we mostly agree that getting a diagnosis can be a breakthrough and that it can bring much better understanding of ourselves and how to deal with the world that we have to deal with.