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Lost diagnosis

Binky

I was diagnosed with autism at very young age

My mum never told me and I found out through a psychiatrist when I was on a ward about my Autism when I was 17

Ive just moved doctors and I have an Autism gp passport I sent in. The doctor had a phone appointment with me and said they can't find any record of my Autism. My old doctors was trying to put a case forward for ASD specific counselling - which already has a long wait list. I’m really worried now as they don’t have my diagnosis so my referral might stop but I’ve had support through college and university for my autism so I’m really lost what to do - I can’t wait two years to get diagnosed a second time and I don’t speak to my close family who live back in my childhood city.

Has anyone got any words of advice for a 'lost diagnosis'. I'm really getting worked up

  • Goodness. You shouldn't have to go through all that all over again.  It's worthy of a complaint that that has been lost that should be permanently on your records, mental health should have a record.  They keep their records longer than a GP would.

    If the NHS has lost it altogether, can you approach the school and/or college.  If they were giving you support they would have had a record of that.

    Once you iron that out ensure your GP permanently flags the system that you are autistic like they would if you had a rare blood type or a peanut allergy so that follows you everywhere.  If you can get hold of a paper copy of the prove - file it and hang on to it.

  • Could you ask your GP to get in touch with the hospital where you were an inpatient when you were told about your diagnosis? Presumably they will have some records unless it was too long ago.

    If your old doctors were accepting of your diagnosis your health records should record this I would have thought.

    ASD specific counselling is available in very few areas of the UK I believe. If you have moved from one health authority area to another they will probably take you off the waiting list and you may find there is nothing similar available in your new area.

    It's a postcode lottery and the current healthcare system rarely works well for autistic people Pensive