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?

  • 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?

  • You have a statutory right to a second opinion; this is formally part of the NHS's charter. An organisation like your local Citizens Advice or HealthWatch should be able to tell you who to get in touch with to assert this right. If they continue to refuse, you would have grounds for a formal complaint.

  • 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.

  • You might wonder why the NHS does not put out its own questionnaires to speed up diagnostic assessments.

  • The doctor spent 10 to 15 minutes talking.
    10 minutes asking me questions.
    10 minutes asking the same questions in different wording to try and see if I gave the same answers.
    15 minutes asking my companion questions.
    10 minutes talking.

    The hour was spent.

    The doctor would not recognise any of these questionnaires. He didn't care that I am clumsy. He just doesn't want to give a diagnosis.

  • 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).

  • 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.

  • They are still alive, but my mother cannot remember much, and she divorced my dad when I was young. All he could say is that he didn't know about Asperger's and that he remembers I was very clumsy.

    I bet 'clumsiness' could be taken as evidence of developmental conditions by the diagnosticians. Your parents might say more to the professionals than to you in forced to answer certain questions. It sounds though like the psychiatrist or psychologist you saw (I suspect the former) wasn't capable of using diagnostic tools  or able to gather a history.

    Your RDOS profile is a bit more Aspie than me, but less so than many people here (who get > 180/200).  RDOS is not widely recognised as a screening instrument. If you want to present prima facie evidence to a professional, the AQ, EQ and possibly SQ from the Autism Research Centre link above would be more likely to be recognised.

  • 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.

  • 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.

  • Should I show this to Dr Jobsworth?



  • Your neurodiverse (Aspie) score: 142 of 200
    Your neurotypical (non-autistic) score: 65 of 200
    You are very likely neurodiverse (Aspie)


    AQ

    Hmm...

  • Good luck! I hope you find something you enjoy!

  • That is very kind of you to provide these links.

    Thank you, I will take a look so that your effort does not go to waste.

    Biology, physics, computers, they all have one thing in common... The storage of information.

    I'm not sure if I will apply to study more. I need to research the available courses and apply for something that will start next September if I am going to study.

    I was thinking of perhaps going for physics. But I think I will look at the available Access to Higher Education courses for adults. The problem is that I would need to take the English GCSE again first. I have the "functional skills level 2" in English, which should be equivalent to a GCSE but academic institutions do not accept it as equivalent, even though they say it is.

    I am not sure, I need to research.

    The debt I have is to student loans, and although they say you do not have to pay it back until/unless you earn a certain amount... I feel the weight of debt and it still grows interest.

    We can always hope that Labour will get in power and scrap tuition fees as they said they would.

    I saw a report by the BBC the other week which says that the Conservatives are simply hiding the deficit in student loans, to make it look like they have cleared the deficit. Apparently it cannot be scrutinised if it is classed as student debt. A sneaky trick, burdening students with the country's debt.

    But let's not get into politics here xD

  • I now have debt and an achievement which can only lead to more study.

    Sorry to hear about the debt issue. You said you studied computer science. That's a really cool topic! I study biology, but I wish I knew more about computer science (I do use a bit of machine learning). 

    There are lots of good jobs for computer scientists. I think it would be really fun to work at Google or Facebook. They have a really good salary and take good care of employees (free meals). I think they also do a lot of innovative stuff, so it could be challenging and fun if you feel held back by overachieving. 

    I know a software engineer who works in a not-so-prestigious company, who enjoys her job a lot. She says there are quite a few engineers who have Aspergers there. 

    By the way, I found some news saying that tech companies are making autism hiring a priority: https://www.monster.com/career-advice/article/autism-hiring-initiatives-tech

    Have you heard of Auticon? https://auticon.co.uk/careers/ It's an IT and compliance consulting business (they have software testing, development, analytics, compliance & security), and most of the consultants are on the autism spectrum. You might like it there, and if you meet other people there who were diagnosed as adults, you may be able to get some advice on the diagnosis process.

  • I have no problem if in the future, people realise there are two types of autism, and call them Type 1 autism (developed in childhood) and Type 2 autism (developed in adulthood).

    I would agree with this type categorisation. But like I said somewhere on this page, this would require getting the board of doctors to amend the diagnostic manual. To build a different criteria for adults, which they could only do if they base the diagnosis on symptoms alone. Then give reference to the development by the type speculated.

    Autism is still autism, whatever causes it. Different people develop at different rates. The diagnostic criteria which is based on childhood alone is flawed for diagnosing adults. It leaves adults who appear at every level to have autism, without a diagnosis.

    The current criteria completely ignores the meaning of the word Syndrome - when adult's diagnosis is concerned.

  • I don't drink alcohol at all. It was just an example.

    Yes, I mean the logic here is the same as your example - causes matter.  Similar symptoms developed with different causes may need different diagnoses. For example, my example of sensitivity to loud noises is an autistic symptom, but can be due to other reasons.

    The brain cells constantly regenerate.

    The brain has a very limited capacity for regeneration. 

    So if someone developed the symptoms of autism or Asperger's in adulthood, is it really a different condition at all?

    I would think it's a different condition. For example Type 1 diabetes and Type 2 diabetes share a lot of the same symptoms (high blood sugar), but they have different causes, and because of this, some treatments are the same, some treatments are different. Type 1 diabetes is developed in childhood and the cause is caused by very little or no insulin is produced by the pancreas. Type 2 diabetes is a long-term metabolic disorder due to insulin resistance, which is the inability of cells to respond adequately to normal levels of insulin. So I believe biological causes are important. I have no problem if in the future, people realise there are two types of autism, and call them Type 1 autism (developed in childhood) and Type 2 autism (developed in adulthood).

  • Does it not relate to your problems with the CBT then?

    I already therapized myself in this way, before I found this video. When I was younger I used to punch out at people. Then I hurt someone and realised that I had to change. I have not hit anyone since, and I do not even have emotional outbursts at people now (shout etc.) thanks to this way of thinking. 

    Some situations I avoid completely, yes.

    What good would it do if I would just end up questioning the therapist and telling them that they are doing it wrong?

    The first time I spoke to a CBT therapist, they refused to help me and referred me back to the GP.

    Then I saw the counsellor at college who assessed me and referred me back to the GP recommending a referral for an Asperger's assessment.

    The GP referred me to psychiatric services, I saw a retiring psychiatrist who referred me to another CBT specialist - who then referred me back to the psychiatrist recommending an assessment for Asperger's. The psychiatrist had retired so I saw another psychiatrist who referred me to the Asperger's services.

    If this doctor just refers me back to these people, they will just refer me back to the psychiatrist again and recommend a further assessment for Asperger's. Most likely.

    Do they just want to keep me going round in circles? It is hit and miss with these people. Its like, they know I have Asperger's, they know CBT will not help me, but the doctors are to afraid to put their name on the diagnosis.

  • I hope you feel proud and happy with your achievements! 

    Thanks, I do not feel proud or happy as I should. People with higher intelligence and overachievers are held back.

    I now have debt and an achievement which can only lead to more study.

    Nobody likes to think that someone who is more intelligent than themselves, could have some kind of neurological disfunction. So most people would look at the achievement and say "there's nothing wrong with you!" I think this is the reason that nobody bothered to point me in the direction of an Asperger's assessment when it might have resulted in a diagnosis.

    Maybe the doctor has a personality disorder?

    For example^

    Even the most talented and intelligent people do stupid things at times. Make stupid mistakes. Have an area where they just fail. I fail at socialising. Some people think I am stupid because of it, when I fail to click to their banter or whatever.

    All my achievement shows me is that I probably have Asperger's. All college gained me was a referral for an assessment.

    Perhaps the doctor felt that I was more intelligent than him? Who knows.