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Has anybody else faced difficulty with getting assessed/diagnosis?

grypoth

I was assessed under CAMHS around age 12-13, and the result came back officially saying "inconclusive" with them clarifying that they couldn't tell one way or another.

Later, years after I stopped going to CAMHS, a medical secretary mentioned offhandedly that in my medical notes somewhere it stated I was quote "probably autistic".

So finally I chase it up because I've reached a realization that it could make my diagnosed conditions either make a lot more sense, may change the type of care that is best for me, and it may help in other ways too such as being able to receive the right support for my education.

I went to my GP and asked them about the comment, to check my records to see if this was ever stated, and they got back to me stating that when I was officially discharged from CAMHS in 2021 that CAMHS noted in their care plan to consider a referral for ASD.

Because of this the GP recommended for me to fill the ASD/ADHD questionnaire, which I did, and they submitted it to the autism service.

I got a message from my GP just yesterday that my assessment was denied on the basis of CAMHS stating to the autism service that they "ruled it out". How can it be ruled out if it was stated to be inconclusive and their care plan explicitly said to consider a referral for ASD? I was assessed for ASD way before 2021, so this doesn't make a lot of sense to me.

I feel incredibly frustrated, I don't know what the next step is after this other than going back to my GP to question why everything I'm being told is so inconsistent. Has anybody else experienced similar difficulties? Is it worth just saving to go through a private assessment instead of all of this?

Parents

  • You've already identified the two options:

    1. Go back to GP
    2. Go private

    Perhaps you can request a copy of your notes to read them for yourself and see if somewhere else it says it is ruled out.

    Note that for some private assessments they do an initial session and if they think you are not ASD they do not continue and only charge you a portion of the money.  In my case it was £2,000 for the assessment and £300 for the initial session. So it would only cost £300 to rule it out.

    I understand you may be confused but you weren't thinking about it till the secretary mentioned it. Do you think you have ASD? Have you done some of the screening tests or looked at you behaviours and things you struggle with? You may be able to confirm something by yourself.

Reply

  • You've already identified the two options:

    1. Go back to GP
    2. Go private

    Perhaps you can request a copy of your notes to read them for yourself and see if somewhere else it says it is ruled out.

    Note that for some private assessments they do an initial session and if they think you are not ASD they do not continue and only charge you a portion of the money.  In my case it was £2,000 for the assessment and £300 for the initial session. So it would only cost £300 to rule it out.

    I understand you may be confused but you weren't thinking about it till the secretary mentioned it. Do you think you have ASD? Have you done some of the screening tests or looked at you behaviours and things you struggle with? You may be able to confirm something by yourself.

Children
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