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Autism adult diagnosis - have there been changed to how GPs refer?

ZoeC123

Hi there, I am an adult who has recently (this year) received a diagnosis of ADHD and I am also autistic. Through my journey, it has become clear (to us at least) that my mum is also neurodiverse. We went to the doctor's the other day to talk with them about getting a referral for ADHD and autism for her. She is nearly 70, but for her, it doesn't matter about her age, it is a footnote that would put things into perspective and explain so much about her life - especially as a woman these struggles have often been overlooked.

The GP says that there needs to be some proof before the age of 12 ( from my own diagnostic process I know that these symptoms have to be present in childhood) and that if she submits for a referral they need to have a school report or they will reject it. For my mum, given her age and the fact that both her parents are deceased, this is a bit of an issue. Also, there was little or no understanding of these conditions in the school environment in the 60s. After the appointment we managed to come across a school report from her secondary school that did say she was "very talkative....inattentive...lazy etc", so we can try again with the GP with that as some initial proof but everything else has been lost or destroyed.

Personally, I was only referred over the summer and just had to fill in a screener, and then I was referred to the community mental health team for subsequent meetings, a DIVA form questionnaire, and a diagnosis of ADHD/autism. I didn't need any proof, although my mum came with me to the meetings and was able to talk about my younger years etc - but nothing at the initial referral level. So because my recent experience was very different I questioned the GP and she said this is a recent change, but I can't find any information about that.

I just wondered if there had been a change in the NHS adult referral process in the few short months since I began my ADHD/autism journey if the GP was just ill-informed, or perhaps at worst not wanting to refer my mum due to her age.

Can anybody advise?

  • Hi Zoe,

    I was diagnosed ADHD aged 58 last year. I was also diagnosed ASD this week and I went through the NHS 'Right to Choose' referral scheme using Psychiatry UK - they have a hugely informative website which includes template letter for GP referral. As far as I know there are only a couple of UK areas who won't use this 'shared care' scheme, I believe this is listed on the P-UK site.

    As far as school reports go, I was lucky that I had some old primary school ones of my own, as both parents are long dead and my brother wouldn't have a clue where to start speaking about how I was growing up as he had his own issues at the time.

    So my daughter - aged 27 filled in the 'informant report' section which they said at the time of my assessment was probably much better information than, say, ageing parents who might dispute the whole neurodiverse thing out of hand.

    I hope that helps. The waiting times at P-UK are also very much shorter than waiting times with the NHS.

    Debs

  • Hi, I’m 55 and going through diagnosis at the moment. I have one surviving parent who is elderly and wouldn’t be able to help. I received the screening pack and filled it in along with an AQ50. The questionnaire to be filled in by someone who knew me as a child I left blank and returned it with a letter from my wife who has known me since a teenager. My memory is very good, most autistic people seem to be very good at storing information. I can remember back as far as pre school. I find that when I analyse parts of my, it makes sense as only we truly know what goes on in our own heads. My questionnaire pack was accepted and I am on the waiting list. Not having a parent shouldn’t be an obstacle, it’s like saying you don’t have a parent so you can’t be autistic.

  • The NICE guidance hasn't been updated since June 2021 and states:

    "If a person scores 6 or above on the AQ-10, or autism is suspected based on clinical judgement (taking into account any past history provided by an informant, offer a comprehensive assessment for autism."

    Nothing there suggests that past history is a requirement. GPs can refer for autism solely on the basis of the AQ10 score. I am not sure about the guidance on ADHD referrals.

    GPs can often be reluctant to refer and I suspect the reasons for that are linked to financial implications for them. Mine even tried to argue that the assessment process would be too much for me, due to my severe lifelong anxiety Confused

    Since my diagnosis it has become clear to me that my elderly mum is also autistic. She has not sought a diagnosis for herself but I suspect would be similarly fobbed off by her GP if she did. I think you rightly suspect that the GP is reluctant due to your mum's age.

    There are plenty of examples on here of adults who have been diagnosed without external evidence from their childhood. 

    I too have read that autistic traits can get worse with ageing. Personally I am convinced that my sensory issues with noise and lights are becoming more pronounced as I age. Sadly there is very little research in this area.

    If your mum has increased care needs in the future then having a diagnosis may become much more important. It is not only for gaining a new perspective on past events. The sensory environments in care homes and hospitals are often distressing and overwhelming for autistic people. Any future contact with 'services' likely to be much more problematic if the staff are not aware of a diagnosis.

  • That's certainly not in line with my own experience. Although I have living parents, I wanted my assessment to be a private matter (though have since disclosed my diagnosis to them) and asked was it OK for the testimony of my own childhood to come entirely from me. They said it was (and how could it be otherwise in instances where no parent or close family member is around any more?) and seemed to get enough from me both factually and behaviourally between the sessions and the survey to conclude I am autistic without any input from a relative. I'd say that your GP is either misinformed or isn't giving you a true indication of the flexibility in the set-up. My assessment was done privately, so perhaps the NHS one is stricter about that, but it sounds very excluding if you ask me.

  • I can't advise about this directly but I have read reports that Autistic traits sometimes become more pronounced with age so I wonder if this insistence with evidencing from an early age will diminish over time as more research is carried out?