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!
My initial GP referral was in February 2017! It has all taken a ridiculous amount of time to confirm something I've suspected for a long time.
On the occasions on which I've phoned the Autism Team it has taken them so long to call me back that I've often forgotten precisely what I asked. Either that or they're out of office, the phone is redirected to a completely unrelated department or I speak to a secretary who sounds stressed and uninterested. Plus, of course, during the final wait for feedback from all of the various parts of the assessment, they were unable to share any information with me because they only diagnose people face to face. I'm sure this is for ethical/professional reasons but even this last stage took 4 months and to me that is even more unethical.
I do hope your experience is better than this. I am, however, glad that I kept pushing and hopeful I'll be able to get all my points across when I meet with the CCG.
Yes, I hope so too. I already made my case over the phone a couple of weeks ago. Lengthy waits, no initial explanation of the process on which I was about to embark, phones and emails rarely responded to and, in the meantime, no possibility of help from a local autism charity, MAIN, because to access this you need a firm diagnosis. I have been really, really stressed and tying myself in knots trying to get something out of this system.
Well done jennyButterfly, and also well done for being strong and telling them how it really is, I hope you get to air your views in a way that makes them see the reality of how things aren’t working.
To anyone else about to go for diagnosis or currently undergoing it, I wish you all well with it.
Hi
i got a referral letter in August and a phone number to call to make an assessment booking... but... the phone rings and rings, no answerphone message, nothing.. the irony of deaf ears. Flagged it to my doctors surgery who were going to try the number. No news since, going to see the gap on Monday
Well folks, I finally got a reply from the CCG and apparently the average waiting time in my area from referral to diagnosis (if any) is 88 days - a far cry from my experience.
However, the CCG now want to meet to talk to me about my experience as they think I'm "very articulate" and that my experience will probably be similar to others who have not felt able to speak out. So that might be interesting. :)
Somebody from the CCG finally got back to me, but only to let me know that they're following up my query with the Autism Service and that they'll treat my more general questions about local waiting lists as a separate issue. It did give me an opportunity to go into more detail, impressing upon her our family's situation and why I need to know asap. We'll see whether this has any effect.
Sounds awful, I bet you are mentally exhausted 3 years is a long time to be left hanging! Hope you get some answers soon... have an e-hug (( ))
Yes, I feel as though my case has just slipped into a black hole. For me it has been complicated by a previous wait for my adult son to have an assessment. Once he got to the top of the queue he decided he no longer wanted anything to do with services. This was understandable after his previous negative experiences with the early intervention team. However, what it meant was that, in order to get any answers regarding what is going on in my family, I decided to ask my GP for an assessment myself. Of course, this is regarded as an entirely separate case so I go to the back of the queue. Overall, though, it's now coming up to 3 years in order to get some answers.
Absolutely! The whole process of getting a diagnosis....preparing my case for the GP, the wait, the assessment and the cold impersonal way I was informed by post... was one of the most autism unfriendly experiences I've been through! It should not be this way!
Although it may be impossible to speed up assessment times at present, wouldn't it at least be possible to get some sort of acknowledgement, by letter, phone or text message, that your referral is definitely in the queue, and hasn't simply been mislaid or used for hamster bedding or something? Surely that wouldn't cost much, and would help to reduce anxiety a little. And the average waiting time in a particular region should be made known at the time of referral.
No response from my CCG yet so I am thinking of putting in freedom of information request. At least then there is a defined response time.
I very much expect that it'll be different between areas and private/NHS services. I'd expect them to be sending you the questionnaires. I was given the AS and EQ questionnaires by the Access and Assessment Service prior to them referring me to the Autism Service. I got the results of these tests in April 2017. I'd expect a private service to send these out to you well in advance and for this to trigger the rest of the assessment process within a much shorter timeframe than the NHS.
The NHS service (Tees , Esk and Wear Valley) I'm using is definitely diagnosis only. I'm hoping they will be able to signpost or recommend books and other resources, but basically I will still be on my own making any subsequent choices from the private or voluntary sectors.
I know.... so.. what triggers the start of the “diagnostic assessment”... ?.
Say, if I just chucked in the post an AQ test... is that the assessment process started?
if you can find someone to do the driving for you I'd highly recommend it... I was utterly drained after each session, I wouldn't have wanted a long drive afterwards 30 mins was bad enuff
. said:From April next year, trusts will have to publish waiting times for referrals - but there is no standard for the time it takes to get an actual diagnosis.
...and there in lies the problem, it is the time until the END of the process that's crucial not the beginning! I had my first 1hr assessment in early May last year and then had to wait until mid Sept for part 2 of 3. During that 4 month wait my anxiety levels shot up and at times I was very depressed as I felt the first assessment had gone badly (the psyc was a very poor communicator and gave very little feedback as to how I was doing) so my paranoid side kicked in and I felt like I'd blown it and would not get a diagnosis even though I KNEW I had to be on the spectrum. I buckled and found a local private therapist who had experience dealing with ASC and with her help got me through that wait and then the subsequent wait after my third of the 3 x 1hr assessments until the diagnosis letter dropped through my letterbox in early December last year. I was lucky to have the finances to do this, many don't...it wasn't cheap...as I mentioned somewhere else I could have paid for a private assessment with the money my therapy cost me! ...and got the whole job done in less than a quarter of the time.
When mine eventually starts it will be a 3 hour round trip to the assessment centre.... by car...
From what the psyc and the admin woman told me the service was extremely busy, sounded to me like they were buckling under the strain...and this was a new service that had only been set up late 2016 from what my GP told me. Strikes me that South Staffs and Shrops Health Care trust SHOULD provide their own service not overload a service for an adjoining county! I'm lucky I'm close to the border and only had to drive 10 miles BUT Staffs is a big county (even excluding Stoke/North Staffs) and Shropshire is massive and very rural with either poor or no public transport, how the hell are people who live say out on the Welsh borders going to cope? Its unfair to make people travel that far.
I had a private assessment a few weeks ago and other than some suggestions of support (eg websites, book list etc) there has been nothing else. They are a diagnostic service however so I guess I didn't expect there to be ongoing contact.
The National Autistic Society believes a shortage of staff, but also local funding priorities, play a part in the long waiting times.
It is calling for the government to make sure local areas are held to account.
From April next year, trusts will have to publish waiting times for referrals - but there is no standard for the time it takes to get an actual diagnosis.
A representative of the Department of Health and Social Care in England said people with autism should receive a timely diagnosis.
"The guidelines on autism are clear - families must start assessment within three months and we expect every part of the NHS to adhere to this," the official said.
And the department said it was working closely with NHS England to help local areas improve the quality and efficiency of care.