Is there any national guidance on appropriate waiting times for adult autism assessments? 

My own assessment seems to be taking an inordinate amount of time and has involved several steps, each with a considerable wait in between:-

1.  Request referral from GP, incl. giving adequate responses to her questions around why I would like a referral.

2.  Receive referral to the local Access Team for a 1:1 assessment as to whether a further referral to the Autism Team is appropriate for me.  This involves an interview of around an hour plus 2 questionnaires to complete and return later.

3.  No feedback from the questionnaires, but then receive a referral to the Autism Team, with a staff member from the Access Team advising that the wait will be 1 year to 18 months and that I will be asigned a care coordinator in the meantime.

4.  Meet with care co-ordinator occasionally, although unsure of her purpose.  She listens but has little to offer inthe way of advice and guidance so the appointments seem pointless.  She does,however, inform me that, due to new working practices, the wait time is now less than a year.

5.  Initial assessment meeting comes in at just under a year and involves meeting with a member of the Autism Team and a social worker.  I am asked to be prepared for a meeting of around an hour and a half but it actually only lasts around half an hour.  This mainly involves them asking questions about my life, incl. childhood and education, but also some very pointed questions about whether I like things to be organised or is there actually anything I don't like to feel or touch.

6.  Wait a couple of months for the next appointment which I'd been given the impression would be imminent.

7.  Next appointment involves two members of the autism team meeting me with my elderly mother (85) and conducting a very long questionnaire-based interview going into my childhood.  It lasts over 2 hours and mum is exhausted afterwards. 

8.  Wait another couple of months and, after querying the process with the Autism Team over the phone, another appointment for a final assessment is received.

9.  This appointment again involves two members of the autism team and is an observational assessment, mainly around the ADOS Module 4 (the flying frogs, the explaining how to brush your teeth, talking about a map and some  further personal questions).  I am told that my case will be taken to a multidisciplinary meeting and they will get back to me.  When I ask about likely waiting times, I am told that, since they only have this meeting once a week, I will get the next available slot but that it might be a few weeks.

10.  Hear nothing for 6 weeks so phone again.  No response.  Email.  No response.  Phone and email.  Apologetic response, explaining that they haven't yet discussed my case in the meeting but that I will hear in a couple of weeks.   I ask whether I will then hear whether I meet the criteria for a diagnosis and no, I won't.  It's just that they'll have had their meeting and will then be able to arrange another appointment for me to discuss the results.  How long will that take?  Another few weeks!

I am still waiting for this appointment date but am wondering - is all of this the usual pattern?  It seems to me that, contrary to what I was advised, the wait is still going to be 18 months once all the intermediate waits are factored in.  And it feels as though I'm never going to hear from them.  Plus, when I complain, I'm referred back to the care co-ordinator with my concerns, even though I know she can't help.  My concern is that, without a firm diagnosis, I cannot access help (for me and my family) from MAIN (a local charity), nor am I really sure whether I'm joining the right groups or seeking the right help.  And we're in a very difficult situation in which we really do need advice and guidance.  The care co-ordinator will be unable to do anything about this stalemate situation.    

Can anything be done?  I appreciate that much will be down to underfunding and autism services not being prioritised, so complaining to the service won't help.  When I asked PALS, they asked me what complaint I had with the service and whether I could talk to the service lead but I explained I'd already done that and that I had no issue with their professionalism, just the wait times and the apparent underfunding.  So i asked whether the trust board were aware of the waits and, if unhappy with these, what was being done about them, and I only got vague responses to the effect that, yes, they are aware and could I address this to the CCG?  I already have.  No response yet.  There's a surprise!