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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

  • 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.

Reply

  • 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.

Children
  • 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!

  • 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.