How to diagnose an adult who doesn't remember being a child.

Hello. I am 36 years old. I have suffered with depression and anxieties almost all my adult life.

I was referred to the Asperger's service on the NHS in 2014 after seeing several counsellors and therapists who recommended an assessment for Asperger's. The first to suggest that I might have Asperger's was a private funded counsellor, paid for by the college I was attending.

The NHS services gave me a few short appointments. The first of which was with a nurse, and involved mainly questions about my childhood which I could not answer. The nurse seemed to have an attitude towards me, and said I didn't have Asperger's because I could not answer the questions - so therefore did not meet their criteria.

I then asked for a further assessment with an actual doctor. I took someone with me to the appointment. The doctor seemed to have an attitude towards me and my companion. Virtually all of his questions seemed to be anchoring around a theme which seemed to be - that he must have thought that I was abused or neglected as a child. Again, not many of these questions could be answered and there were almost no questions relating to the symptoms I experience and how they affect my life.

Now, just now in 2018, they have decided not to give me a diagnosis. The doctor said they will just refer me back to psychiatric services and recommend CBT and further assessments. He believes my symptoms are something to do with my personality. However he said that personality disorders are not diagnosed any more. I think it was a personality clash between myself and the doctor. He probably felt like I was wasting his time because I could not answer his questions. I feel that they have wasted years of my life - as I have been waiting for appointments this whole time.

They have refused to give me a second opinion with another doctor and will not give me any more assessment time.

Many people I know believe that I must have Asperger's. When I told some people that I was being assessed, they said that they thought I had Asperger's but never mentioned it before because they either did not wish to offend me or because they assumed I must already know.

When I first learned what Asperger's and Autism is, I did a lot of research. I became able to identify autism in all of the other students at the college, whom I previously thought just had some learning difficulties such as dyslexia. It became clearly obvious to me if someone has autism or not.

With every other illness in the world, the diagnosis is given based on the symptoms. With most illnesses, the doctor isn't even concerned with the cause. For example, if an alcoholic has depression then they diagnose depression and treat depression. They might recommend for the person to stop drinking, but they don't diagnose alcoholism and ignore the depression.

One thing which is not made clear at all, in websites like this and the information available - is that if a person cannot answer questions about their childhood, no matter what symptoms they have, they will be refused a diagnosis for Asperger's autism. This should either be made abundantly clear, or it should be changed. The assessment criteria for an adult should depend on the symptoms alone and not the cause.


There is no cure for Asperger's, yet they will try to cure me with CBT and give me other assessments which produce negative results.

What am I supposed to do if I cannot answer questions about my childhood?

Parents
  • Do not just assume that a private assessment will cost thousands. Actually research and contact any private providers you would be willing to travel to and ask them what their assessment costs are. 

    I am able to get a private assessment for £550...AND it is NHS recognised. My GP has to make the initial referral to the service and cannot legitimately refuse to do so as I will be paying for the assessment myself.

    My local NHS waiting list is 3yrs or more and they are currently making it nigh on impossible for adults to ge referred.

  • I didn't just assume it. I did some web searching and contacted a few companies, they haven't contacted back yet. One had rough prices of his services.

    It has taken about 3 years for the NHS to fob me off. They are still using a pen and paper for one thing. How hard would it be to write down the questions of their criteria and get PDF documents printed off? O, they don't want someone to publish them online and highlight how flawed they are.

    They need to stop pretending that Asperger''s and Autism are some special type of thing that can only be diagnosed by some special type of doctor. It can be diagnosed by any psychiatrist or psychologist. If I can identify it in people easily enough, then if I had the questions of the criteria then I could give an assessment. 

    I think it is disgusting the way they practice this diagnostic process. Nobody should have to wait 3 years for this.

  • They need to stop pretending that Asperger''s and Autism are some special type of thing that can only be diagnosed by some special type of doctor. It can be diagnosed by any psychiatrist or psychologist.

    I'm afraid that's not true. I had three incompatible opinions from NHS psychiatrists within the course of a year. The autism specialist was certain I was AS after an assessment; the head of the psychotherapy department was certain that I didn't (without an assessment), but that I was severely depressed; while the one at the CMHT didn't even believe AS existed, because it was as Tony Attwood puts it, 'trendy', and, having nothing to offer, concluded I didn't have a problem. Psychiatrists are bound to have their own outlook and favourite of 500 possible 'disorders', depending partly on their training. At least they should recognise that autism's subjective and requires two diagnosticians (not necessarily psychiatrists) to be reliable.

    You might reasonably think, autism being a psychiatric diagnosis, that psychiatrists would recognise it. But there is huge ignorance within the mental health system, which is partly why so many people receive incorrect diagnoses and unhelpful or harmful treatments. There is no need for a psychiatrist. They're also much more expensive than other professionals, thus limiting access to diagnosis. Unfortunately secondary care is built around consultants.

    By the way, far from all aspies are geeks or even computer literate. Many people have dyscalculia, for example.

    BTW 2, the Tony Attwood video you posted was also posted a couple of days ago here:

    https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/13301/could-it-be-asperger-s

    BTW 3, I've also replied above.

Reply
  • They need to stop pretending that Asperger''s and Autism are some special type of thing that can only be diagnosed by some special type of doctor. It can be diagnosed by any psychiatrist or psychologist.

    I'm afraid that's not true. I had three incompatible opinions from NHS psychiatrists within the course of a year. The autism specialist was certain I was AS after an assessment; the head of the psychotherapy department was certain that I didn't (without an assessment), but that I was severely depressed; while the one at the CMHT didn't even believe AS existed, because it was as Tony Attwood puts it, 'trendy', and, having nothing to offer, concluded I didn't have a problem. Psychiatrists are bound to have their own outlook and favourite of 500 possible 'disorders', depending partly on their training. At least they should recognise that autism's subjective and requires two diagnosticians (not necessarily psychiatrists) to be reliable.

    You might reasonably think, autism being a psychiatric diagnosis, that psychiatrists would recognise it. But there is huge ignorance within the mental health system, which is partly why so many people receive incorrect diagnoses and unhelpful or harmful treatments. There is no need for a psychiatrist. They're also much more expensive than other professionals, thus limiting access to diagnosis. Unfortunately secondary care is built around consultants.

    By the way, far from all aspies are geeks or even computer literate. Many people have dyscalculia, for example.

    BTW 2, the Tony Attwood video you posted was also posted a couple of days ago here:

    https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/13301/could-it-be-asperger-s

    BTW 3, I've also replied above.

Children
  • I'm not a lawyer (let alone a court), so I can't say what's legal.

    I suppose it's possible the nurse was also a psychologist, or completed postgraduate training during your assessment process. Or could it have been that the psychologist was mentioned as a second professional giving an opinion based on not having actually seen you at all? It's unusual for a psychologist (who may have a PhD) to use the title 'Dr'.

    If there are errors in the report, you should have a right to get those corrected. Try seeing if whatever NHS organisation was responsible has a 'healthcare governance" team. You could also check out the current pathway is for autism diagnosis - if it's not easily available online, you could put in a Freedom of Information request to the mental health trust. Statutory guidance says there should be such a pathway. Then see if your appointments follow that pathway. Also if you have a particular complaint, you could try your local Healthwatch.



  • The nurse was trained to carry out an initial assessment, to see if I fit the criteria for a diagnostic assessment.

    Is it legal for a nurse to sign of on a Diagnostic Assessment Report as a doctor? That's what they have done.

    She told me herself she is a nurse, the doctor told me she is a nurse, her email signature states she is a nurse... But in the DAR they have stated she is a Dr and she signed it as a Psychologist.

    The report claims that she gave me an initial assessment, but it gives no details of that assessment.

    Originally, for the initial assessment, she was late for the appointment, asked me questions for 10 minutes and then asked me to stand outside. Then she said I didn't fit the criteria for an assessment. I complained about this and got an assessment. I do not think that counts as an assessment at all. But because of this, the report claims that I have already had 2 assessments by doctors.

    Is that even legal?

  • it is true because of the way they strictly follow a set of criteria for the assessment process.

    I'm not sure what you're saying here. Did the psychiatrist you saw 'strictly follow a set of criteria'? It sounded like they didn't, and were testing against their own personal criteria. Diagnostic methods vary a lot in practice. Here's the NICE guidance:

    https://www.nice.org.uk/guidance/CG142/chapter/1-Guidance#identification-and-assessment (see 1.2.5 in particular)

    They are happy enough to run on the "say so" of a nurse. Since that is the case, yes any psychiatrist or psychologist can do the assessment.

    A nurse could be trained to carry out an assessment such as ADOS-2 as well as screening. My point, in case it wasn't clear, was that not all psychiatrists and psychologists are 'professionals who are trained and competent' in autism.

    I think it's right that a questionnaire can not be seen as a conclusively negative or positive result. Probably my self-appraisal of my communication skills is higher than reality. So the NICE guideline seems fair.

    I didn't say that they are. I said most people left in computer science have some form of ASD (after the majority of people drop out).

    Sorry for any anti-newbie prejudice. I really don't know how much you know and how much is obvious. I've been reading around the subject for a couple of years and thought could give a perspective.

  • it is true because of the way they strictly follow a set of criteria for the assessment process.

    As I said, first a nurse first assessed me and pre-concluded that I did not have Asperger's. If I took her word for it then I would not even have gotten to see a doctor.

    They are happy enough to run on the "say so" of a nurse. Since that is the case, yes any psychiatrist or psychologist can do the assessment.

    They are jobsworths and refuse to deviate slightly from their given criteria and line of questions.


    By the way, far from all aspies are geeks or even computer literate.

    I didn't say that they are. I said most people left in computer science have some form of ASD (after the majority of people drop out).