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!
I’m going to dig deeper...as the phraseology on the guidelines is very woolly... I.e you SHOULD start the diagnostic process within 3 months rather than MUST, or even a window of time I.e should be within three months but no longer than 9 months.....
thanks linesman
Thanks for the info Ellie... interesting to see that my health care trust (South Staffs and Shropshire) can't have provided any data as there are no figures for them, probably embarrassed because there are no services at all for adults and they have to farm us out to West Mids. My waiting time was 7 months till first appointment (but 15 months until diagnosis) nowhere near as bad as some but way off the govt target.
I was diagnosed 10 years ago (private diagnosis using company health insurance, was referred by my GP) - and that was it. Nothing. No follow up, no referral to anybody, no backup, no support. Was something supposed to happen? Who was I supposed to see and what were they supposed to do? I'm in South Herts so I don't know if there's a difference between different authorities.
Many thanks. I'll have a look. I thought I'd heard 3 months referred to but I couldn't remember where. I still haven't heard back from the CCG but I'll follow up with another email to them after the weekend, copying in PALS too. Not expecting any results but I do feel the need to push for better.
just found the following news article on the NAS news page from last month
https://www.autism.org.uk/get-involved/media-centre/news/2018-07-18-autism-diagnosis-postcode-lottery-exposed.aspx
Here is the link to the full report (14 pages). It breaks down average waiting times by healthcare service regions. Worth a look.
https://www.autism.org.uk/~/media/nas/get-involved/media-centre/newsdocs/autism%20diagnosis%20crisis%20foi%20response%20briefing.ashx?la=en-gb
in a nutshell..
Children and adults face shocking waits of more than 2 years for an autism assessment and over 3 years for a diagnosis in some areas of England, according to new evidence. The research was conducted by Liberal Democrat former Health Minister Norman Lamb MP, in consultation with the National Autistic Society and the All Party Parliamentary Group on Autism.
But new statistics obtained through freedom of information requests to Clinical Commissioning Groups in England highlight a postcode lottery in waiting times for a first appointment, with many parts of the country falling woefully short of the three-month target in 2016-17.
. 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.
It's all been a very long journey, for much of which I've been barking up the wrong tree. I wish I could visit my 14 year old self and give her some advice.
A diagnosis may well cause me some degree of turmoil. However I think this is likely to be minimal compared to what I've already been through. Plus, if I can "find my tribe", a positive diagnosis might represent a kind of homecoming.
Yes, my next step will be to contact my MP, although I doubt whether this will make any difference. A collaborative effort just might but, of course, this won't help us in the here and now.
Up until this point we have used other mental health services and even there provision seems to be patchy and very much focussed on short term therapy(usually a watered down version of CBT), crisis work or recovery work. No open ended support for those with chronic issues.
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
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.
The mad thing is with hindsight I could have used all the money I spent on the therapy I needed due to the wait to pay for a private diagnosis! The whole process would have taken probably a quarter of the time and cost about the same.
Jenny Butterfly said:I'm 55 and have spent far too much time chasing standard solutions for extreme anxiety and other (often related) issues without having any corroboration of my suspicion that much of it is likely to be ineffective because I am somehow calibrated differently.
Absolutely! Hole in one, same here... I've spent much of my adult life trying to fix myself having known I was different since being a kid... only to find I was using the wrong service manual... no wonder DOH! In the 9 months since getting my diagnosis I've at times felt quite depressed once the initial euphoria of receiving the diagnosis wore off. I've recently realised its that I'm grieving both for the normal NT person I've always tried to make myself into but am never going to be and also all the lost time and money doing so. I also have a lot of sadness that during the time that I was waiting for my diagnosis my Mum passed away. I never told her about my forthcoming assessments, I was going to wait until I knew for definite. I'm pretty sure she and dad were also both on the spectrum and it would have helped make sense of her struggles in life too.So what I think I'm saying in my usual waffely way if you do get a positive diagnosis, be prepared for an emotional rollercoster and be nice to yourself... I've some way to go through it yet too.
This sounds dire and confirms my thoughts on the process - that it is haphazard at best, varies across the country and takes far too long. I was already told that this is a diagnostic service only, with no follow up, but to me it us a fundamental matter of identity and of knowing, if you like, "the truth about me".
If I can just get to what I consider to the starting point of a firm diagnosis, then I will at least know that I am joining the right groups, reading up on the right subject and, if I choose & can afford to buy in any services, I will not be wasting time on the wrong diagnosis. I'm 55 and have spent far too much time chasing standard solutions for extreme anxiety and other (often related) issues without having any corroboration of my suspicion that much of it is likely to be ineffective because I am somehow calibrated differently.
You're quite right - it shouldn't have to be like this!
From both my own experience and from reading others experiences on here over the last year... if there are any guidelines I dont think they are often being followed, it's all a postcode lottery to my eyes and peoples experiences seem to vary widely.My experience in 2016/17 in south east Staffs was...Ask GP for referral...wait 8 months then 1st appointment (out of county as Staffs have no adult autism services at all) with psychiatrist. This is a 1 hour face to face interview, the first of 3.wait another 4 months for the next 1 hour session... and in the meantime suffer from huge stress and anxiety about not knowing the outcome with meltdowns and shutdowns, so much so I pay for private therapy to get through it!wait 1 week until final session thinking I am going to be told at the end of it yes or no, only to find out the psych has to go away assess the results and then decide after which I will be informed by post. He said this would probably take 4 to 6 weeks....he was wrong!wait 11 weeks and letter drops through my door with the result... yes I am autistic. Whole process start to finish was about 15 months...and then...Nothing!... that's it no follow up what so ever, no counselling, therapy, support groups, no contacts from my GP's surgery ... diddly squat! Don't get me wrong getting my diagnosis was one of the best things I've ever done, I now understand myself and the previous 52 years make sense now...BUT it should not be like this! I'm coping, I'm lucky to have a supportive wife who earns enough for me to be a house husband to my 2 boys so I don't have to work....and despite many bouts of depression and almost perma-anxiety I get by without services...however many don't!