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Diagnosis - no assessment for high functioning ASD?

NAS50424

Hi,

I went to my GP around a month ago, as I am quite sure that I have high functioning ASD. I am female and in my mid-twenties, and have had depression on and off for about 10 years, as well as anorexia for 6 years (now recovered). I think these were secondary to ASD, which may have been overlooked due to differences in the female presentation of ASD. My GP was very receptive, and I wrote everything down to give to her as a kind of report explaining my symptoms. She put a referral in to an NHS Assessment & Liason team (London), and I received their response letter a few weeks ago.

The letter said that the team do not routinely screen for ASD in those who are higher functioning, and they would only consider assessment when functioning is significantly impaired or there are significant comorbidities or other risk factors. It says that from the referral, there is no suggestion of other comorbid mental health issues or acute risk. However, I would argue that, while my depression is OK at the moment, it is only a matter of time before I go through another bad period (for example, I presented to A&E last September as I was having suicidal thoughts). I feel the root cause of my mental health problems (social difficulties/depression potentially caused by ASD) will continue to go untreated if I do not get assessed for ASD, and I do not really understand the reasoning behind their decision. 

I was wondering if anyone else had been in a similar position in the NHS system. I do have money that I could spend on a private ASD assessment, but I wonder if it would be worth making a case to this service that I do have significant comorbid mental health problems that will likely continue to cause me problems in the future. I have a phone appointment with my GP to discuss the letter next week.

Thanks

Parents
  • Former Member
    Former Member

    I believe they are bound by the NICE guidelines for adult autism:

    https://www.nice.org.uk/guidance/cg142

    At this stage the key pieces would be the items in section 1.2 - Identification and assessment.

    https://www.nice.org.uk/guidance/CG142/chapter/1-Guidance#identification-and-assessment

    If you can make a case that you meet the criteria in those guidelines, then I think you should be assessed.  (At least that is my understanding.)

    What I and my partner did, and have suggested for several others, which also seemed to work for them as well, was to:

    * Download and complete the AQ and EQ tests from here:

    https://www.autismresearchcentre.com/arc_tests  

    You can also download the answer keys from there.  Since you're in no rush you can do the version of each with the most questions.  If those seem to indicate potential autism then:

    * Write a short (no more than 2 sides of A4) "life history" which illustrates areas in your life where seem to have had problems that relate to the identification criteria in the NICE guidelines.

    Then when you go back to see your GP, take a copy of the NICE guidelines, your completed AQ and EQ tests with the answer keys, and your short life history that indicates where you have had problems in the criteria that have had a material impact on your life, health and well-being.

    The assessment centre is correct in saying that in order for an ASD diagnosis to be given, there has to have been some significant adverse impacts to you as a result of your problems.  I expect that wasn't made sufficiently clear in the initial referral.

Reply
  • Former Member
    Former Member

    I believe they are bound by the NICE guidelines for adult autism:

    https://www.nice.org.uk/guidance/cg142

    At this stage the key pieces would be the items in section 1.2 - Identification and assessment.

    https://www.nice.org.uk/guidance/CG142/chapter/1-Guidance#identification-and-assessment

    If you can make a case that you meet the criteria in those guidelines, then I think you should be assessed.  (At least that is my understanding.)

    What I and my partner did, and have suggested for several others, which also seemed to work for them as well, was to:

    * Download and complete the AQ and EQ tests from here:

    https://www.autismresearchcentre.com/arc_tests  

    You can also download the answer keys from there.  Since you're in no rush you can do the version of each with the most questions.  If those seem to indicate potential autism then:

    * Write a short (no more than 2 sides of A4) "life history" which illustrates areas in your life where seem to have had problems that relate to the identification criteria in the NICE guidelines.

    Then when you go back to see your GP, take a copy of the NICE guidelines, your completed AQ and EQ tests with the answer keys, and your short life history that indicates where you have had problems in the criteria that have had a material impact on your life, health and well-being.

    The assessment centre is correct in saying that in order for an ASD diagnosis to be given, there has to have been some significant adverse impacts to you as a result of your problems.  I expect that wasn't made sufficiently clear in the initial referral.

Children
  • in reply to Former Member

    I agree with windscale's suggestions. It might have been that it was not made sufficiently clear that you were struggling in the first referral. You can ask your GP to refer you again, and this time try to provide more evidence, like the short "life history", the AQ and EQ questionnaires, and it maybe useful to say that you suspect that ASD may be causing your depression. Good luck asking again! You are definitely not the only one here that has had problems with the first assessment attempt.