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The struggle to get an adult diagnosis

holtnatalieholtnatalie Posts: 7Member Listener
Hi, I'd be interested to hear from people that have got their diagnosis as an adult and how they went about that. I've been trying for apx. 3 years via my GP and haven't got anywhere. Is going private the only option as an adult ?

Replies

  • MatildaMatilda Posts: 2,288Member Brian Blessed
    edited February 2017
    Have you asked your GP to refer you to a specialist - under the NHS?
  • VioletFennVioletFenn Posts: 123Member, Community advisor Chatterbox
    edited February 2017
    Hi, @holtnatalie

    Have you spoken to any local autism support groups? They are often a really good source of info re diagnosis in both children and adults.  

    National Autistic Society have info about getting a dx here and will be able to point you in the direction of local groups.

    Find a local group is a really good start because they should be able to talk through what options you have in your area, along with details of any consultants who might see you privately should you decide to take that route.   They will also be able to tell you the name of your area's NHS specialist - you could then go back to your GP and simply ask for a direct referral, as per @Matilda 's comment above.
  • holtnatalieholtnatalie Posts: 7Member Listener
    Hi, yes I've asked my GP to refer me to a Clinical Psychologist or an Occupational Therapist but he says there isn't that service for adults in our Borough only for children. He got me a telephone assessment with MIND but they said because, in their opinion, I'm coping, i.e. holding down a job and getting 2 kids to school, I don't qualify for further assessment. This is despite explaining that I've had to reduce my working week to 3 days to cope and am now on anti-depressants. I also asked the GP to ask the local commissioning group to fund a diagnosis, but was turned down.
    I got very excited when I found there was a NAS diagnostic centre in my area, but again there is a cost involved. I could save up, ofcourse there would be a way but with 2 kids and 2 days less money coming in, I really can't justify spending that money on myself.
    I will contact my local NAS group to look for further options.
    Thank you both for your comments.
  • davidj49davidj49 Posts: 63Member Talkative
    Hi, I'd be interested to hear from people that have got their diagnosis as an adult and how they went about that. I've been trying for apx. 3 years via my GP and haven't got anywhere. Is going private the only option as an adult ?
    Hi, My NHS GP referred me immediately to the NAS via the NHS of course.It is everyone's right in the UK to be referred if it's your wish.If your GP won't then you can ask for another GP and request again.

    I would take the online AQ test and then tell the GP score, and also why you think you might be Autistic. The GP is not qualified enough to know if you are Autistic or not.
  • SFPSFP Posts: 2Member Listener
    In my experience, the major problem is a lack of knowledge, even amongst so called 'experts' when it comes to adults with disabilities. I know that I have a disability and the closest fit I can find is dyspraxia but I'm 58 years of age and I've compensated for it and coped with it for so long that it seems to throw accurate diagnosis or support out the window. That is, supposing you can find someone capable of providing a diagnosis at all.
    I'm also wary when it comes to finding a private source of diagnosis. It's difficult to know who the truly knowledgeable experts are and, even if they are, there's no compunction on the part of employers or service providers to acknowledge its validity. I'd really like a diagnosis as well and I fully sympathise with your predicament.
  • VioletFennVioletFenn Posts: 123Member, Community advisor Chatterbox
    It is worth noting that NAS do not fund assessment as a rule, although they may do it on rare occasions.

    Your GP is always your best point of contact to start with, obviously - if you are lucky enough to live in an area with a good assessment pathway for adults you can be assessed through the NHS. Many areas offer this, but some do not. NAS can advise on other routes to take. 
  • davidj49davidj49 Posts: 63Member Talkative
    edited February 2017
    Hi, I'd be interested to hear from people that have got their diagnosis as an adult and how they went about that. I've been trying for apx. 3 years via my GP and haven't got anywhere. Is going private the only option as an adult ?
    This should help you... http://www.autism.org.uk/about/diagnosis/adults.aspx.
  • davidj49davidj49 Posts: 63Member Talkative
    It is worth noting that NAS do not fund assessment as a rule, although they may do it on rare occasions.

    Your GP is always your best point of contact to start with, obviously - if you are lucky enough to live in an area with a good assessment pathway for adults you can be assessed through the NHS. Many areas offer this, but some do not. NAS can advise on other routes to take. 
    The NAS do fund assessments. I was assessed at a Autism Diagnostic Centre in Cambridge. The NHS and the NAS work together to get people referred and assessed, and it's all free for the client. 

    The NAS raises funds that pay for assessments and the various clinics around the country, and funding is achieved via major companies.

    If there was no NAS then there would not be any free diagnostic services for everyone.

    The whole country is covered by the NHS, so this means everyone is catered for.
  • Sam_ScopeSam_Scope Posts: 5,423Administrator Scope community team
    edited February 2017
    Hi @davidj49

    I’m not aware that NAS do fund assessments, as there is no mention of this at all on their website.

    In both the child and adult section, you need to get a referral from your GP, or go privately. We spoke to the Cambridge branch and the lady we spoke to confirmed that NAS is in the same building as the PCT – and NAS do not do the actual diagnosis, but they share facilities in the same building and offer various clinics after diagnosis.

    Whilst diagnosis is available on the NHS, there can be quite a long wait – hence someone going privately, which is suggested on the NAS website.

    I cant see any reference on their website about raising funds for assessments. They do a lot of work to raise awareness by supporting various professionals, but I can’t see that they offer medical training to make such a diagnosis.

    The NAS may run the diagnostic centres but I can't find any information to say they pay for the assessments. They charge the NHS for the assessment and it is up to individual CCG to decide if they will pay. 

    Hope this helps, we can see from members posting that the diagnosis process can be difficult, confusing and quite different for people depending on where they live.

  • davidj49davidj49 Posts: 63Member Talkative
    @Sam_Scope

    I was referred immediately and had an appointment 3 months later, this means not always does it take a long time to be assessed. I hope you encourage people to seek a referral, as every single citizen from the UK has access to referrals and to be assessed.

    It's not all gloom and doom.
  • SFPSFP Posts: 2Member Listener
    What do you do if you believe you have a disability other than autism?
  • davidj49davidj49 Posts: 63Member Talkative
    SFP said:
    What do you do if you believe you have a disability other than autism?
    Speak to the GP?
  • holtnatalieholtnatalie Posts: 7Member Listener

    Hi All, thank you for your input.

    @davidj49, thanks for the pointers. I didn't know about the AQ test. I scored 37! I don't think it's all doom and gloom, but I do think your story is exceptional and amazing and I'm so glad your GP listened to you. For me it is very wearing. Like Violet I only started put 2 and 2 together when researching to help my two neuro diverse sons. A definite light bulb moment.

    SFP - I think NAS is still a good place to start. There is so much overlap and co-existence between ASD/ADHD/Aspergers/Dyspraxia to name but a few, that they may still be able to point you in the right direction, if your GP can't. I do get really wound up with doctors that ask me 'so what do you think it is?' .

    Sam - I have the NAS form for my local diagnostic centre. I will complete it and take it to my GP who will hopefully refer me now I've done the research for him, even if he doesn't, I'll still send it off. I am realistic that I think I am still looking at costs but at least I'll know how much. Of course I will first suggest that my local CCG pay for it but don't hold out much hope.

    I'll keep you all posted.

  • davidj49davidj49 Posts: 63Member Talkative
    @holtnatalie

    I am glad this helped you. 37 is score that clearly points to ASD, in the AQ test 80% of those scoring 32 and more went on to be diagnosed with Autism Spectrum Disorder.

    Keep in touch .
  • holtnatalieholtnatalie Posts: 7Member Listener
    Hi all, a quick update. My local NAS diagnostic centre accepted my forms and offered me an appointment that would gave cost £1900. I took the letter to my GP and he submitted it for NHS funding. I then got 2 letters, one from my GP saying no luck, and one from a local hospital offering initial screening. Took the screening and I'm now on NHS waiting list for assessment. Unfortunately the wait is apx.12 months but just getting on the list feels like a great achievement so I'm hanging in there
  • ms11ms11 Posts: 8Member Listener
    This is a very relevant topic for me. I've been trying to talk to GP's for 20 years about my mental health problems, mostly without success. I've given up now because I am certain I have ASD, and that is as far as I am going to get. I had a brilliant GP as far as my physical problems were concerned (Ankylosing Spondolitis, heart problems, out of control blood pressure etc etc) but mention the daily problems I face in my mind, and he would sit looking blank. I thought he didn't understand, but eventually he told me that his daughter was a doctor specialising in mental health problems, and they often sat round the dinner table discussing the problems facing the NHS with mental health. He recognised I had autism, but there was no point wasting time and money trying to prove something that there is no treatment for, when there are dangerous people out there with more pressing problems. He told me to go back in a month for another talk, and the receptionist then told me that he was now semi retired and had passed me onto another GP. Try as I might, he would never see me again. Several GP's later, everyone agrees I have ASD, and just to live with it.
    The problem is, I do not respond well to problems. I would stay indoors, and be fairly safe (as long as I don't answer the door - as advised by the police), but I have to make a 3 hour round trip on the bus at least every 4 days to visit my 90 year old mother. She is worse than me with anxiety, and never talks to anyone but me and my wife, so I am more or less her unpaid carer. I can honestly say that every time I make this journey, something happens that ruins my day. I constantly come up against rude aggressive people (often bus drivers), and can't deal with it, then it traumatises me for months after.
    I know I am not exactly helping on the topic of getting a diagnosis, and I apologise for that. Just want you to know that you aren't alone, and I really hope you have the strength to keep moving forward.
    We are all different, there is no "normal". Surely that's a good thing ?
  • holtnatalieholtnatalie Posts: 7Member Listener
    @ms11 thank you for sharing your experience, its sounds debilitating and I'm sorry you haven't received the answers you need. It does make me feel less alone in the struggle for my diagnosis knowing there are others going through the same thing. 



  • Sam_ScopeSam_Scope Posts: 5,423Administrator Scope community team
    Hi @holtnatalie
    How are you getting on? Are you any further with the assessment?
  • holtnatalieholtnatalie Posts: 7Member Listener

    Hi @sam_scope

    I'm still on the NHS waiting list. I called them last month to make sure my name was still there and to see if the list was still as long. They think 9-12 months waiting so I'll call again at the end of March for an update. Still hopeful I'll get there eventually.

  • NystagmiteNystagmite Posts: 610Member Chatterbox
    Hope all goes well.

    Whilst I did manage to get diagnosed fairly quickly compared to you, I was told that some areas won't fund because apparently, we've coped and should have adapted by now. We'll just ignored the years of depression and self harm then...
  • holtnatalieholtnatalie Posts: 7Member Listener

    Hi @Nystagmite

    The 'coping' thing drives me nuts. There was no diagnosis for the things I find difficult when I was younger. I knew I perceived things differently from other people. I learnt some things through trial and error, some awful relationships, and some 'curl up and die' social situations. That doesn't mean those same things aren't still really difficult, and if anything the need for the answers to why I feel the way I do is even more important to me now than ever. I don't think any health professional should be allowed to 'write you off' because in their opinion you are 'coping'. Whether you are a child or an adult, you should still have access to a diagnosis.

  • Sam_ScopeSam_Scope Posts: 5,423Administrator Scope community team
    Best of luck @holtnatalie - it's good to hear from you!

    It is such a shame that the waiting times are so lengthy, is there any support in place whilst you wait?
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