Adult experience of getting an autism assessment

Hi 

This is my first post on here.  I am 46 and female and am considering the possibility that I may be mildly on the autism spectrum.  I am unsure about trying to get a professional opinion as have heard of some negative experiences of the process and just wondered if others could share how they went about getting diagnosed and what the process was like?

I have done four different online tests which indicate if you may be on the spectrum and they all said I may be mildly.

Thank you very much.

  • Make a list of reasons why u think u are autistic.

    include blood relatives in your family who are autistic or adhd or called weird/different

    and a list of occasions when u have been called weird, autistic, different

    the list should be electronic ie so you can email it to anyone who wants it.

  • go for a NHS diagnosis. Private ranges from 1000 - 1600 quid.

    here is the plan to follow plus my notes taken over the years in here

  • Don't want to put you off but mine took many years and the only "help" that was offered at the end of it was a 6 week course in pretending not to be autistic (or social skills training as they call it). I was essentially handed a label and told "good luck with that". The psychologist who completed it did spend most of the assessment staring at me like I was an interesting zoo exhibit.

    The process involved a 1 year wait for an initial 15min meeting to do a basic screen in person, then another 1 year wait for the full assessment which involved filling out a lot of questionnaires, a long face to face interview and they spoke to my mother. 3 months later I was sent the diagnosis. I can go into more detail of exactly what happened via PM if you would like.

    However, if you are looking to use it to get help from benefits or social services, you really need an NHS diagnosis as they seem to be very suspicious of privately obtained diagnoses. As if you bribed your way to it... I know this is ridiculous but I have experienced this attitude towards my private therapy etc.

  • Thanks for sharing your experience Peter, I hope you are able to find some support locally.

  • Thanks John I will have look at these.

  • just also wanted to say thanks for sharing your experience also and advice 

  • 1st time I raised it with my GP he gave me the AQ-10 to do, saw I scored high, checked some records, saw that the local autism diagnosis pathway was closed to new referrals and sent me away telling me they couldn't pay for me to be seen outside the CCG.

    2nd time years later my GP was very sympathetic. Gave the the AQ-10. Saw I scored high. Referred me to our local councils adult neuro developmental service. They sat on my referral for almost a year I think, huge backlog, Then conducted an ADOS-2 test which involved a series of telephone interviews and video calls. Mostly with me but also one with my farther. There was supposed to be only one telephone interview but we kept overrunning so it was more like 3 + the short video call. I would describe the telephone interviews as gently prompted questioning where I was encouraged to ramble off answers about my personal experiences and difficulties.

    They gave me a summery of my diagnosis at the end of the video call and a written report in the post and long with a directory of local services 99% of which I wasn't eligible / suitable for.

  • As well as writing some notes about past and current experiences, traits, quirks etc, it might be worth doing the following tests??? You could report back with your results for comparison Slight smile

    AQ  https://psychology-tools.com/test/autism-spectrum-quotient

    EQ https://psychology-tools.com/test/empathy-quotient

    also no harm also doing the Aspie test on the following site

    rdos.net/eng/

  • Hi Moon  Thank you for sharing your experience.  I am currently revisiting my past through a different lens and am finding a lot of things making sense.  I hope all goes well for you with your assessment.  It's interesting to know that the NHS can do a video assessment as this would be good for me.  

  • Hi Martin Thank you for that, it is useful to know that assessments can be done online, that would be my preferred method of doing this. 

  • Hi Ben  thank you for sharing your experience and the advise.  I too struggle with anxiety which over the last year or so has limited many more areas of my life.  Thank you again.

  • I think it's the old postcode lottery scenario. I've had a very positive dealings so far with the NHS about my autism (given longer timescales due to covid).

    I contacted my GP in July 2019 - she was very supportive, but it took a few weeks for her to figure out how to refer me to the Autism Assessment path.  

    I was contacted in late 2019 by the assessment service and sent some diagnostic tests (AQ50? Cambridge Behaviour Scale? can't remember exactly). Not long after I was told I was eligble for assessment and put on the waiting list - "some months long" I was told.

    Covid 19 screwed things up, but I did get some follow up calls to explain the delays and check I was coping.

    I was finally offered a video assement in April 2021 - sadly I couldn't attend because my brain was AWOL/shutdown until June when I got back in touch with the assessment service. Now it's booked for Sept 2021.

    In the last 2 years I've read as many technical and personal accounts of ASD, Aspergers, PDA and any similar conditions that they are misdiagnosed with.

    I've also made a concerted effort to recollect all manner of incidents hidden in the darker corners of my mind - in the past I shied away from thinking about the past, but now I can re-visit them through the lens of autism... and they all make sense now! (well nearly all)

    I now have a much greater understanding on how I need to arrange my life to suit my autism - I don't need to wait for the official diagnosis for that.

  • Hi, I also went down the private assessment/diagnosis route, and it was painless, apart from the pain in the wallet! I didn't bother with my GP, just referred myself. Before the assessment (I waited about 3 and a half weeks) I did a large amount of research on the diagnostic criteria and autism in general, and compiled a long list of my characteristics, difficulties and experiences that fit into these criteria. I had an online assessment with a consultant psychiatrist and after 45 minutes he said that he was diagnosing me as being on the spectrum. The rest of the time we discussed some 'comorbidities' I have. Before the assessment there was a very long and detailed questionnaire to fill in, my wife did one too from her perspective, and I did an AQ test.

  • Hi, 73915, welcome to the forum.

    My experience with the NHS was very poor so I went private, as have many here, but I think you should try NHS first.

    To start the ball rolling, see your GP,  taking with you a short  list of your difficulties, ASD traits etc. and have a chat about it, request a referral to a psychologist.  It seems, reading other posts on here, that in most areas there is a waiting list of about  three years, but that  does vary.

    My private assessment followed a lifetime of anxiety, leading to addiction to prescribed meds, with no-one ever quite understanding me.  I chose who I wanted to see and waited just two or three weeks.  I went through the assessment process and was fairly quickly diagnosed. It was painless.

    Oh, how I wish I'd done that years ago, it was expensive but worth every penny. There is no real treatment and no cure, but being recognised as ASD by a proffesional clinician was such a relief, being understood and taken seriously. I now feel so much better about myself and am making sense of my past, and still learning. There is always more.

    Whatever you do, I wish you well.

    Ben