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NHS Autism assessment - what to expect?

Kate Kestrel

Hi all,

My appointment for my Autism assessment (with the NHS) is now getting close. I’ve been trying to not think about it but I really feel it’s so near now that Ireally should think about it. It’s online (on a zoom type thing)  and seems to be very long in terms of time - and I have absolutely no idea what to expect. Is it basically just a chat about life or are they actually going to give me tests of some kind? I really haven’t got a clue what to expect. 

How did other people find the NHS autism assessment for adults? And is it different for women? (I’m a woman and I’m in my fifties). 

thanks :) 

  • in reply to Caelus

    It wouldn't surprise me.  I won't name the organisation involved, but I found the experience to be very poor.

  • in reply to Wombles

    Thanks - I’ll keep all that in mind. I’m sorry your experience was so frustrating. 

  • in reply to Wombles

    probably why i never got anything back, they probably cancelled contract and lost all the data of the people on the waiting list. not bothered now, sorted my life myself to some degree, dont need their help no more. 

  • After an initial session to get my details and other medical issues, I had one session remotely about three hours long.  I also completed three questionnaires and they spoke to my parents  The private contractor used by the NHS was hopeless though - it took 12 months from the point of referral for them to have my diagnostic assessment appointment and then a further 12 months for them to get back to me with the outcome.  I thought that was extremely poor and the excuses of covid delays didn't cut it with me.  I believe the NHS has since rescinded the company's contract for diagnostic services.

    I would suggest that if you encounter unreasonable delays, consider making a complaint to the Care Commissioning Group in your area.  I suspect I would be still waiting for an outcome if I hadn't complained to the CCG.

  • Hello,

    I’ve recently been diagnosed, I’m female in my fifties. It took 2 sessions of 2 hours each, lots of questions about my childhood and life as it is now. They also asked one of my family some questions about me. It was hard but so worth it as I feel so much relief. Best wishes to you.

  • in reply to NAS80301

    Thanks for sharing your experience - I’m glad it was worth it for you. That’s what I’m hoping for. One of my worries is that I have a really poor memory of my early childhood - I don’t know why. I don’t have many really detailed memories of my primary school years for example. Anyway - I suppose what will be will be - I can only do my best to answer their questions. I feel sick at the thought of this appointment though. At least it will soon be over. 
    best of luck to you - I’m glad you feel the diagnosis was so positive for you. 

  • in reply to Elaine

    Thanks. I’m surprised how little info they give to prepare you for it - surely they realise how intimidating and anxiety provoking such an assessment must be for autistic people? I don’t feel they give you enough information about what to expect. 

    in the initial appointment I became upset too when talking about painful memories from school. I’m sorry it was difficult for you - but I’m glad you now feel it was worth it. 

    good luck with everything x 

  • what to expect, id expect them to never even have gave you a time or got back to you and for it to never have progressed lol

  • Hello,

    I’ve recently been diagnosed, I’m female in my fifties. It took 2 sessions of 2 hours each, lots of questions about my childhood and life as it is now. They also asked one of my family some questions about me. It was hard but so worth it as I feel so much relief. Best wishes to you.

  • I did write 3 pages answering some of their questions before assessment, so I did not have to talk that much, I think my assessment was like 3h with 15min break, when I almost had a meltdown

  • I was diagnosed with Autism last week and I’m 46 and female.

    I had my assessment in 4 sessions of about 1.5 hours each.

    1. Went through my early childhood until I left school.

    2. Observational assessment in person called the ados assessment.  Given tasks to do and  some questions.

    3. Sensory assessment  

    4. Autism camouflage task - this identifies masking

    I think I only had the 4th assessment though as I didn’t really show autism signs in the observational assessment, as I’m so used to masking and spent many years working on my socialisation skills.

    it was a difficult process to go through for me, as I had to go back to difficult memories.  However now I have the diagnosis it does explain a lot.  I’m glad I now have the answer.

    I hope everything goes well for you

  • My daughter had one, but in person. So there were questionnaires, practical tasks, and some very in depth interviews. I can’t say anything positive about the experience. I hope yours is better. If I had any advice, it would be to just be you.