Published on 12, July, 2020
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!
From my own experience, that of friends, and a few years on several forums like this one, my impression is that it is pretty much a "postcode lottery." Even a "time lottery" too; my wait was only a couple of months, but I had been referred within a couple of weeks of the diagnostic unit opening. My advocate at the time told me that within six months, they'd had two years worth of referrals for the staffing level they were funded for (NHS provider but local authority funded.) Since then, all post-diagnosis support by the unit has ended, and it has been effectively closed for referrals at times. Before this unit opened, adults had to rely on case-by-case applications for CCG funding to attend a private clinic; I was rejected for that twice, purely on funding grounds, as the psychologist there had already agreed that an assessment was appropriate.
Our local Healthwatch organisation has made autism care one of its ongoing research projects, and they released an interim report late last year which was pretty damning...
The above categories are not arbitrary; if you look at the latest statutory guidance for the Autism Act 2009, you'll see that they cover many of the legislated legal duties. It seems that non-implementation never results in any action being taken, so the Autism Act can be treated as a very low priority. It doesn't help that when the Act was created, it came with no additional treasury funding for implementing its measures - it was all supposed to come from existing local authority or NHS budgets.
There's little redress from the service providers unless they do something directly harmful to you personally while in their care, because they aren't individually responsible for enacting the duties of the act, that's the local authority's responsibility. For example, I was rejected for social support because I didn't have a learning disability, which is specifically deprecated by the guidelines; but the learning disabilities unit that I was referred to has done nothing wrong, as their name makes abundantly clear! The problem is that there is no, more appropriate, social services unit for autistic adults to go to for help. Local mental health services don't offer the help I need, either. There is a very good local provider of autism services who I've been in contact with, but without being referred by social services, I can't access it unless I fund it myself or my GP can get CCG funding which would be extremely time limited even if it gets approved.
The only chance for change is if enough people kick up enough of a stink with their MPs and counsellors, possibly via organisations like Healthwatch or the NAS. But we're a small minority of people, each dealing with the stresses of our own personal case, so I can't help but be pessimistic about the chances for improvement. The Healthwatch report mentioned above only resulted in one extra member of staff for the autism unit - platitudes have been the only response so far to the wider concerns about the local authority's implementation of their statutory duties.
There seems to be a great deal of signposting to other services and service teams than dealing with the now and getting to the route of the issue. Whether that’s largely due to funding cuts and lack of specially trained staff I don’t know...
To get a referral seems to some at battle in itself. I was looking at self funding a private diagnosis rather than wait poss. Up to two years for an assessment and it’s outcome. I have had verbal confirmation from my doctor of referral two weeks ago but nothing yet.
the resources used in terms of mental health resources must be quite large ..as it seems that some have had to reach a point of crisis before they get help and then nada support when diagnosed
. said:some have had to reach a point of crisis before they get help and then nada support when diagnosed
Jenny Butterfly said:No open ended support for those with chronic issues.
Both well said. When I think of the 30-odd years that I've been medicated and counselled to little effect, the callouts to crisis teams, the harm that I've done to my physical health and so on, I'm astonished that no-one could see that what I needed was a proper diagnosis and a couple of hours a week with a support worker to keep me on track with looking after myself properly. There is absolutely no recognition of the financial and human cost of neglecting preventative interventions. Sadly, this now seems common for an ever wider variety of disabilities and illnesses.