New and looking for advice

Hello everyone. I want my daughter who is 19 years old to be tested for autism. It is something that she also wants as she wants answers to why she is the way she is. I’m presuming it is a long process with the NHS. I just wondered if anyone could share their experience with the diagnosis process and how you got it. NHS or private? Thank you for your time Slight smile

  • PsychiatryUK is free and quite good. When I asked them I got my diagnosis in about 3 months time. There is no support or any help afterwards,  apart from some useless CBT from NHS. 

  • Thank you everyone for your advice and what you’ve experienced. It’s very helpful. 

  • I managed to get my diagnosis through the NHS, I went to the GP and said that I think I may be autistic. Of course she had my medical history and stuff so I did not really have to say much and she sent off the referral. I think I waited 11 months until my assessment. Before the assessment they asked me to fill out and email back some quizzes, one of them was about growing up, the other was a very long test (think it was the RAADS-R) and another one which someone else would have had to fill out (someone close). 

    When I was at my assessment, I was taken to a small room that was sensory friendly and all the staff were incredibly kind and it felt like a very calm and safe environment. I was told the process and how long it would approximately take, that I can take breaks whenever I need to. The assessment was more of a chat, I was just asked questions and he made some notes along the way. I only had that one session and at the end he told me that I was autistic, and went through what autism is and recommended some resources such as social media influencers and books. I got an email with a pdf report attached confirming my diagnosis and all the notes he made about 2 weeks later. 

    At the time I was happy that I got the diagnosis, but shortly after that happiness turned into sadness and I was left feeling abandoned as I didn't know how to process this and what autism specifically meant for me. I still don't know, trying to figure it out, and have tried searching for post-diagnosis support but with no luck. Somewhere that does offer post-diagnosis support where I live and that's NHS (as I am a student I don't necessarily have the funding for seeking private services) turned me down as they already have a waiting list of 2/3 years. 

    I would suggest going to your GP with your daughter and seeing what they have to say first, find out the waiting time and decide how you would like to proceed from there. I can't recommend anything, but don't overlook the importance of post-diagnosis support. Not only can this be from therapists or support groups, but also from you. I am going to base this off my own experience, I am very close to my mum but she knows nothing about ASD nor is actively trying to learn more. She wasn't accepting of my diagnosis, and I have brought it up indirectly a few times after and she doesn't engage in it. I think not being able to talk about it to my mum is one of the reasons I am struggling to process it, and if she also has a close bond with you she may want to seek support from you too.

  • My experience is that there is zero in the way of resources available for any autistic adult who can mostly function in society, The best that can be hoped for are accommodations that have virtually no monetary cost attached.

  • The practitioners who diagnosed me also work for the NHS and went to great pains to demonstrate that they were adhering to the “gold standard” approach to diagnosis. The lead clinical psychologist had a long and impressive list of qualifications and a specialism in autism.

    The diagnosis process was much longer and comprehensive than some of the accounts I’ve heard from others on here.

    So I am confident that they knew what they were doing and that their diagnosis has weight.

    But would I put it past Greater Glasgow & Clyde to deny people access to other resources without an official NHS stamp? Not really.

  • That is flatly against the NICE guidelines, if those operate north of the border or have a local equivalent. The only measure of the validity of a diagnosis for ASD or any medical condition is the relevant qualifications and membership of medical bodies of the clinician or clinicians making the diagnosis. Where the money came from to pay for the assessment is of no relevance whatsoever. Some health authorities and other bodies just make things up, often erroneously. This sort of thing needs to be challenged. Besides through the NHS 'Right to Choose Scheme' (possibly not in Scotland) NHS patients are referred to private providers for autism assessments. It is insane!

    Can you imagine someone who had been privately diagnosed with diabetes or cancer being denied treatment on the NHS because their diagnosis had been privately paid for? It is a scandal that autists have to either wait years for NHS assessment or get denied recognition if they go private.

  • I haven’t even spoken to my GP since my diagnosis, although they were sent a copy.

  • Hi, due you mind if I ask did you have any issue with your GP and GG&Clyde NHS accepting a private diagnosis.  I'm just starting the process and GP has put in referal but its to Community Mental Health Team as he said even if I went private I'd still need to complete the NHS assessment.

  • I paid for private assessments for myself and my then 19 year old daughter with Psychiatry UK (https://psychiatry-uk.com/). We both had a good experience with them. You do not need a GP referral for a private assessment. If you want to go down the NHS or 'Right to Choose' routes then I would recommend getting together plenty of evidence before asking for a referral, lots of history of autism traits going back to early childhood. Also get your daughter to take some online autism tests. AQ10 and AQ50 (sometimes called just 'AQ') are the most commonly used by clinicians in this country, but the RAADS-R is the most definitive. They can be found here: embrace-autism.com/.../
    If she scores in the autism range, it will give you more ammunition to back up your request for a referral..

  • I was told the NHS waiting list was 2-3 years+ (Glasgow) so I decided to go private.

    I spoke to two providers listed on the NAS website before choosing.

    Within approx 3 weeks I had an initial 2 hour face to face consultation where we talked about my life history, what I experience etc. I was also given numerous forms to fill in.

    A week or so later I had two more face to face sessions totalling about 3.5 hours. They were for an IQ test and the ADOS test.

    Separately they also interviewed two people who know me. I wasn’t present for that.

    About a month later I went back in for a feedback session, my diagnosis result and my report.

    The whole process felt a bit like being reborn. I learned a huge amount about myself and felt seen and understood for the first time in my life.

  • NHS. First my university said, 'get a diagnosis but you'll have to pay for it yourself.' Then the law changed. So when I next went to my GP they said 'yes you should be diagnosed but we can't aford it,' which strictly speaking was against the rules. Then later my employer sent me back to my GP saying I should get a diagnosis so they refered me ... some time early 2019 late 2018 I think, I'm not sure. Late 2020 mid pandemic they get back to me. They're going to try and diagnose me via video call. What actually happened was me and my dad had to fill in a lot of paper work. Forms about my childhood etc. Then there were 3 phone interviews then a video call. Then I got a report in the mail saying I was autistic.

  • Hi.

    I was diagnosed at 60 through the NHS via a private provider - this option is sometimes available with NHS trusts which have a long waiting list.

    From GP referral to diagnosis was less than a year.

    The assessment was all done online - so, quite a few forms to complete and then 2 one hour discussions with a psychologist and a psychiatrist via Zoom.

    All the best.