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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

  • Thank you all for your helpful replies! Windscale, I think you are correct in that comorbid problems were not really included in the referral. I did give my GP a life history and scores on the AQ, but unsure if these were included. 

    I think to save myself a lot of worry I will go for a private assessment. 

  • I don't hold much faith in the NHS for AS or other types of HFA. It's something that they are not good and neither do they consider high priority because it isn't life threatening.

    If you aren't getting anywhere with the NHS or you feel the timescales are unreasonably long then it really pays to go private.

  • in reply to Trainspotter

    The other thing to bear in mind is that with the NHS you might find that there are waits of 3 - 4 months between each of the assessment appointments.  For me this added around 10 months to the process.

    Against my principles, I have now arranged for an assessment at the Tuke Centre in York for my older son.  In York the NHS wait would have been 14 months.  The Tuke Centre can see us next week!

  • I fear the same thing in regards to a diagnosis from the NHS. I saw a copy of my medical records and a letter from my local trust pretty much indicated that they are geared towards diagnosing children or adults with severe learning disabilities. As a result I'm still considering a private diagnosis. 

  • in reply to Trainspotter

    Thanks for sharing your experience! I think this is very helpful. I've been considering private recently (I was hesitant at first because of the large amount of money), but I've been on the NHS waiting list for what feels like forever. And there have been so many administration mistakes during the process that things got delayed, and I have no idea how much longer I will have to wait. Anyway, I'm glad to hear that the private route went well for you and that you are getting reasonable adjustments at work.

  • My GP refused to send me for assessment, saying that my health authority would not cater for adults to be assessed and diagnosed!  Although I thought this was a load of tosh to shut me up, I did not persue this line because he also said it would be in excess of two years on a waiting list even if I did go ahead with it.

    This was at a time I was suffering one of my bouts of severe anxiety and depression, I was off work and it was clear to me I would be dismissed after a short period if I did not have proper evidence of what was causing my problems.  My employers Occupational Health Service is intent on calling everyone suffering stress a malingerer and wrote a report accordingly.  I needed to act fast.

    I went private.  It was money I could hardly afford, but it was very well spent.  The assessment was thorough and the report explained clearly adjustments needed at work.  This then was used as evidence for Access to Work to come into assess the workplace and provide funding for a support worker and training for staff.

    I am not saying everything came up roses after that, it has taken over two years since the assessment to finally have a workplace that doesn't give me stress and is comfortable for me.  But at least now I can go to work without worrying about being pulled up for seemingly blunt inappropriate comments or stimming or other autistic traits.

    By all means go through the NHS route, asking for a second opinion about the referral, but for speed and getting an answer to the question of whether you are autistic, the private route provides results within a few weeks rather than a wait extending into years.  I have heard of people waiting three years for an NHS assessment and diagnosis.

  • 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.

  • 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.