Waiting too long for assessment

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About a year ago, I have been in touch with the local organization that does assessments for Asperger's syndrome.
I had to fill in two questionnaires (AQ, and later I learned the other one was the EQ test) and based on my answers I was placed on a waiting list to be assessed. They send me a letter to inform me about that, and it also said that the waiting list was at that time 10 to 11 months, but they were trying to make it shorter.
Eleven months have passed now, but I haven't heard anything from them. I looked them up online and the site still claims that they are doing the tests.
Eleven months is a long time to wait anyway, and now I waited all that time, and nothing happens. Maybe I am not on the list after all.
I don't know what to think about this, or do about it.

Maybe you should contact them by telephone or even in person to ask about it. If they don't give you a clear reliable response, you might as well go somewhere else to get your assessment done.

If that organization is officially qualified to formally diagnose people for AS, has experienced diagnostician(s), has a good track record of diagnosing AS and costs less, then you might as well persistently try to fix an appointment date with them, stating that you've already waited for 11 months.

If not, you might as well go to a different place for diagnosis.

I'm having my first assessment in June. The cost is a bit of a headache, but I can manage. I don't know if I should do anything now to make the process of assessment easier.

Go to your GP. I have been on the board(s) in wolverhampton that decided the pathway for the diagnosis. It has only been implemented at the beginning of April. This is Nationwide, so please go to your GP , explain that you had a referral but it has not been carried through to an appointment and you would like a referral from your GP.

I can't go anywhere else. This is the NHS service in my area and the next nearest is five to six hours travelling away. I don't have enough money to pay for private assessors, and their results are not always accepted anyway.

I know I should go to the GP. But I wanted to avoid that initially. This service has a self-referral option, which is what I did. They still contacted my GP about it because that is how they work. I am now embarrassed to go to the GP - for anything- because when I am there that assessment organization and their comments come up on the screen of the doctor's computer, and the doctor reads it and knows it, which is just really really awkward. I was there recently for the pap smear test and I just wanted to get out asap because I was so embarrassed. Especially because it might even be nonsense - I have not been diagnosed with anything so I may just be a silly hypochondriac.

Wrongbilly, what is the pathway for the diagnosis?

I'd recommend that you contact them - refer to the letter and ask if they can tell you when you are likely to be seen. If you are able to attend appointments at short notice, tell them as that way you might be able to jump the queue if someone cancels.

It took 15 months waiting for my son to be assessed for autism, and 19 months for him to see an Occupational Therapist. The wait for an OT appointment would have been even longer, but they phoned me when they had a cancellation at less than 24 hours notice and because I work from home, and my diary was free, we were able to make it.

Try not to worry about it. All it takes is for a member of staff to be off sick or on maternity leave - and the waiting time increases. Funding restrictions mean that although the staff themselves want the waiting times to be shorter, it's not always possible.

Phone them or email, and ask them to tell you where you are on the waiting list now, and if they can give you even a rough idea of when you might be seen.

Well, I emailed them - now I have to wait and see what happens.
I'd think that if the waiting time increases they would let me know, though.

Marcia - 15 months is a very long time. How old is your son? If he is a child that would be unacceptably long, I'd say...

Yes, 15 months was a very long time - that was 4-5 years ago though and I know that another parent on here who lives near me didn't have to wait nearly as long for her daughter to be assessed by the same team. The problem was partly due to underfunding, and partly to key members of staff being on maternity leave which wasn't covered - to save money

Having said that - while we were waiting he was allocated a community Speech and Language Therapist who met with him regularly and the school pretty much anticipated the diagnosis and put accommodations in place which were later formalised with the diagnosis, so it wasn't like nothing happened for those 15 months.

E-mailing them is a good start. If you don't hear back from the e-mail in a week or so I think you need to telephone them AND write to them. Sometimes with the NHS you have to harass them to get anything done or they will just take the piss; "the squeakiest hinge gets the oil".

I've learned that "I'd think..." statements when it comes to the NHS are usually wrong.

I got diagnosed with AS last year and this year with fibromyalgia and chronic pain syndrome. I've also got OCD. The combination is pretty disabling and I am costing the government over £100 per week in benefits. Research shows that the best treatment for all of OCD, CPS and fibromyalgia is therapy and the success rate for said therapy is pretty high. I can't imagine it costing *much* more than £100 per week to give me 45 mins therapy per week. I'd think in this situation they would give me some therapy. Am I getting any therapy? Nope. Nothing. So in the meantime I am pretty much completely unable to work, am costing the government ~£120 per week (not even taking into account taxes I'm not paying through not working) but because of the pettily bureaucratic way the NHS works, somebody ~5 miles away in a different area will get therapy and I wont.

I don't mean to hijack your thread I just wanted to illustrate that you probably need to set your expectations fairly low when it comes to the NHS. Now they've said they will assess you they probably will but you might need to kick up a bit of a fuss at some point to get things rolling. Good luck.

I have a reply to my email now. It said that they have fallen behind but it will be my turn in a month. I hope so.
I'm really not sure if I will turn out to have AS, but I'll see what they say.