Being assessed without support

Hi again. I’m so sorry you’re having so many problems without the support you need. I too am very isolated but I am fortunate in that there are people around me who check-in from time to time to see how things are going. I was starting to think that I would be better off leaving the assessment but after what you have written I now think it’s better to know one way or another. It would answer a question & some insecurities. Life is difficult so I think any problem I can resolve is a good thing. In terms of waiting times my local NHS authority is sub-contracting Healios (an online alternative) to help try and cut down on the waiting times. I hope you finally get the support you need & deserve soon!

I think the waiting times are due to the amount of work they have on. It took 5 months from my diagnosis to getting the written report, and I'm sure that was genuinely due to the service being overwhelmed by the number of assessments they need to do. BUT, my criticism is that they don't keep us informed, and provide accurate information. They're providing a service to people who need far more clarity and certainty than the majority of people, but are acting as though we are NTs, and can cope with vagueness and uncertainty.

When I was first put on the waiting list, under the old Welsh autism service, I asked how long it would take, and was told about 10 months. After a few months I asked again and was told about 12 months. So my reaction was that's not too bad, it won't be long before I know. My first appointment was after 12 months, where I was told it will be 3 months before I see the psychiatrist. Then when I had that appointment the psychiatrist said it will take about 3 months to get the result. So to someone who is supposed to think in black or white, that 10 months seems like a lie. Wasn't it obvious that when I asked how long it will take, I wanted to know how long until I get the result? Or was I supposed to ask a clear and unambiguous question just in case I wasn't going to be given an accurate answer, even though I had no reason to think I'd get a misleading one. The person I asked didn't say 10 months until the first appointment, then about 6 months after that. She just said 10 months. I made plans around getting a diagnosis in 10 months.

The new service is obviously struggling, but two months after getting my diagnosis I was told reports are taking about 2 months, a month later they were taking 3 months, and after 5 months I was getting desperate and laid it on pretty thick that I was desperate, and got the report in a couple of weeks. I think they really are doing their best, but surely they could send out a monthly e-mail telling us how long things are taking, with just a brief explanation as to why it's so long, just so we know. Every day for months I was thinking the report may be in the post today, but it wasn't.

Maybe contacting politicians and starting petitions is a good idea, but my life is falling apart and I need to get it sorted. I can't take on doing anything else.

I can only suggest that  times I read hear about people are being kept waiting is scandalous. I can only refer that you seek help from the Citizens Advice Bureau, Your doctor! 

You could also write to your elected representatives, eg. MP, MSP (Scotland), AM (Wales) and the Northern Ireland equivalent (Stourmont) : Your Local Councilors, (Anybody that needs your vote).

If you can find a common theme - you could always orcanise a petitionon the Government website get 100,000 votes andit has to ube debated in Parliament., Maybe the NAS could help you seek this kind of problem solving.(Do it after the summer hollidaysand before election time or it may be lost as has happened.

I needed to know definitely, but it's 5 years since the NHS noticed, and put me on the waiting list, and it was about 3 years before that when I started to work it out for myself. In that time I've become almost completely isolated, and stuck in a situation that I can't get out of that occurred in the few years before that. I haven't actually got any support yet. I've been trying to get help for over a year without success, from every organisation I can think of. I'm on the waiting list for support from the Welsh Integrated Autism Service, but don't know when that will happen, or if it will resolve anything.

As far as being prepared for the diagnosis goes, I read a fair bit about the subject, and got some useful ideas from it, but there was always a doubt about if it was the problem, or if I'd actually get a diagnosis. A lot of the characteristics of autism could be some other condition, and lots of NTs experience them some of the time, so I always had doubts. Getting the letter that says I actually have it made a huge difference, because now when I see a feature of autism in me, I can be sure that I have that feature because I'm autistic. But there's a long way to go. I need to try and start an almost completely new life, but it could take several years to get out of my current one, and at my age I'm running out of time. So there's big relief that I finally know, but lots of fear and anxiety about the future.

Thanks, undeniably it’s going to be different for every person. I don’t really talk to people much & so finding this forum is great. I just feel I need to be prepared...as much as possible. Have you found your diagnosis and support ‘liberating’?

I got my diagnosis last year aged 63, without anyone to support me, or provide any evidence of my early life. It was all done through the observations of the person doing the diagnosis, and the answers I was able to give to questions. She seemed experienced enough to recognise sufficient signs. This was my second attempt, as the first time I had an inconclusive result. A different person did the actual assessment that time, but the one who did the recent one was also involved, and had disagreed with the first result. She had to be absolutely sure to be able to change the first result.

It may depend where you are in the UK. I think Wales, where I live, is probably ahead of many other areas in diagnosis and support, but it's certainly not perfect.

I've never heard of people using them before, so I wouldn't worry (it was just a random idea)

I'm sure jotting it down will help in terms of remembering things.

Thanks for the reply and good advice. Unfortunately I didn’t think school reports were of any use, never a fan of school! I might, with the advice of the people on this forum, try and jot some relevant information down. I like to be prepared!

Hi. I'm also waiting for my assessment, but I've heard that you can share your own childhood experiences if you don't have anyone to take with you, and your childhood memories/experiences are still valid. 

Do you have any old school reports? I wonder if those might be useful (e.g. if there are comments in your reports that could indicate autistic traits).