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Unable to take a parent to my assessment... will it affect getting a diagnosis?

ironclad

Hello everyone, I hope you can help me out a bit here.

I had an external assessment with an autism/aspergers charity local to me which showed a strong indication of undiagnosed autism spectrum disorder which led me to have an appointment with my GP.

After a 5 month wait, I have finally received a letter from NHS services to confirm they have received my GP's referral. The letter states there is a year long wait to be seen, but it is strongly recommended I bring a family member or someone who has known me since I was a child. I am unable to fulfil this. Therefore I must ask; will this affect obtaining a diagnosis?

I am worried since I have been waiting for what will be a year and a half, and feel that this diagnosis will be really helpful in order for me to acquire help and access services that I quite desperately am in need of.

Any help or advice would be great, thank you.

Parents

  • I was in a similar position prior to being diagnosed at the ago of 53 in  2016 (my mother was dead and I didn't want to involve other family members as they lived hundreds of miles from me).  I got my diagnosis but I am sure it would have been more helpful to the people carrying out the diagnosis if they could have had someone who had known me since I was a child. 

    I don't know if schools keep records on a pupil which could be of use to someone wanting to get a diagnosis (regarding communications, behaviour etc) and if they do if they can easily be accessed.   I had an old report card from primary school which I looked at for possible symptoms, all I could see that I thought could be of any relevance was a comment which said that I was a "quiet boy", I decided not to take that along when I went for my diagnosis.  Before I went for my diagnosis I took time to remember any relevant stories (things I was good at, things I was not good at, sociability, communication problems etc) from my childhood and wrote them down.

  • in reply to AutToFindOutMore
    AutToFindOutMore said:
    I didn't want to involve other family members as they lived hundreds of miles from me

    The team who assessed me were happy to involve my Mum by posting out a questionnaire for her to send in, as she lived too far away to attend any of the assessment sessions. If distance and/or time are the main barrier to involvement of a relative, it might be worth suggesting this to the assessment team.

    It's worth noting too, that the NICE guidelines specifically point out that family involvement should take into account the needs, and any disabilities or communication difficulties, of the "informant", and that assessors should be considerate of any concerns which the patient has regarding family involvement (e.g. estrangement, conflicting attitudes to seeking diagnosis, etc.)

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  • in reply to AutToFindOutMore
    AutToFindOutMore said:
    I didn't want to involve other family members as they lived hundreds of miles from me

    The team who assessed me were happy to involve my Mum by posting out a questionnaire for her to send in, as she lived too far away to attend any of the assessment sessions. If distance and/or time are the main barrier to involvement of a relative, it might be worth suggesting this to the assessment team.

    It's worth noting too, that the NICE guidelines specifically point out that family involvement should take into account the needs, and any disabilities or communication difficulties, of the "informant", and that assessors should be considerate of any concerns which the patient has regarding family involvement (e.g. estrangement, conflicting attitudes to seeking diagnosis, etc.)

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