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Waiting for formal diagnosis

NAS80940

Hi.  I've recently had a mental health assessment and scored high on the autism test.  I've been referred to the local autism team and am waiting for an appointment for a formal diagnosis - aware this could be a long time off.  I have been searching online for advice about what to do pending the assesssment and there doesn't seem to be much advice.

I've done a bit of readingas I didn't know much about autism and late diagnosis- from what I have read, I tick a lot of 'boxes' and it would explain a lot about my life. Feel like I'm in limbo and not sure what to do pending the appointment.  Anyonehave any advice?

Thanks

Sam

  • in reply to CallMeLeo

    Congratulations on your diagnosis

  • in reply to Dawn

    Really? Wow. This is interesting. I'm googling that app now. Was that an oversight when the system was designed. Often MH services are quite cagey about giving you information.

    I did a SARS release to get my note and I'm not sure they disclosed everything.

    But yes, I agree suddenly seeing what they thought all along gave me a lot of insight in to what went so horribly wrong with them. The hallmarks of my autism were all over my interactions with them and in the experience I was describing to them. And yet not only did they not recognise my autism, but never believed a word I said to them and dangerously misdiagnosis me without ever telling me what that diagnosis was. I will never trust them again.

    That said, I am however delighted that some of you are having more positive experience, with more MH professionals picking up on the autism.

  • CallMeLeo said:
    downlaoded the Airmid app and every time I had an appointment regarding mental health i’d read the notes after, this really helped me, mostly because they didn’t realise I had access to that data.

  • Collect your questions together and throw them out here. Some one will know the answer.

    Also there are a lot of really good autobiographies of late diagnosed people worth reading too.

  • Hiya I was diagnosed last thursday, before that i have been waiting for newrly two years since my first initial phone assessment *shakes fist at covid*, I’d say there’s a lot of videos on youtube like Asperger’s from the inside or purple ella or The Aspie World. The first one made me feel like they understood how I felt and that really helped me lean into the possibility of being autistic, but some of the ADHD stuff rang true as well, do some research because there’s a supportive community out there. I would recommend signing up to a service that gives you access to all your medical notes in the UK i downlaoded the Airmid app and every time I had an appointment regarding mental health i’d read the notes after, this really helped me, mostly because they didn’t realise I had access to that data. So if you can view your notes that would help. Go to your local GP and speak to a mental health nurse as mine actually got my mental health issues correct, and her notes helped me know exactly what is seen from other people’s views. Keep in contact with them as they can also offer and advise on medication because the wait is sadly very long because of the covid backlog, it’ll feel like you’ve been forgotten about. Maybe look online for some coping strategies. For the actual assessment it would help them a lot if you have someone who knew you well as a kid who has been in contact with you for your whole life as the assessment relies quite heavily on outsider views and not just on anectdotes, sometimes we remember things differently to how they really happened or we don’t remember accurately they way things were. If you can get access to your old school reports from your local educational body that would help them too. Keep a mood diary, things that upset you and what you wrre thinking and why and add parts about how people reacted to you and what they said to you and tie that in with your view of things. Jot down any meltdowns, what happened and why, how you were feeling and thinking. Any triggers, lights, sounds. Any time you feel overwhelmed and start to get the picture of what sets you off, then learn how to calm those things down. Wishing you the best ask any questions