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?

  • Yes, I was mindful of mindfulness when I wrote that. I'll try to watch the video, and have also been considering a Kabat-Zinn-style course. Does it not relate to your problems with the CBT then?

    I have had the experience in a test situation of being forced to give a mood rating, choosing almost at random, and I think was able to access something then.

  • But I already think logically... The questionnaires I got from the CBT therapists were all full of emotional based questions. So much so that I even questioned the questionnaires rather than answering them. Then the therapist referred me for a diagnostic assessment for Asperger's.

    Hmm....I think maybe the person isn't doing it right, or maybe your fit with the therapist just isn't good (I think it does depend a lot on personal traits of the therapist).

    It's possible that you already think logically, but there is more than one way to think logically. And if a "good" therapist can come up with another logical way of thinking that you agree with, but leads you to be happier, then that would be successful CBT. 

    I did not see this as unfair. I finished with a Distinction* grade. (note the star)

    Sorry, I just meant to give some examples of what kinds of possible thoughts one can have with the situation, I didn't mean to imply that you were thinking that way. It's really good you got Distinction* and were able to help other students. You have really great ability and talent. I hope you feel proud and happy with your achievements! 

  • This is quite weird. From what I know, CBT is suppose to be logical. It's suppose to help the person doing it think in a logical way. They assume that it is logical errors and irrational thoughts that make people more and more depressed or anxious.

    The theory of CBT is coherent and logical. Testing beliefs can also be logical. However, the practice as it was given to me involved monitoring emotions related to thoughts, and monitoring pleasure in response to an activity. The underlying (reasonable) assumption is that mood is something like an accumulation of emotions and determined by pleasure.

    Because I am alexithymic, actually doing either monitoring task was very tricky for me, and indeed it caused the psychologist to suspect autism. It's possible I can learn to work out what I'm feeling before doing CBT. Alternatively, I do hear of CBT adapted for autistic people, but don't know the details.

  • All you need to do is highlight the text you want

    thanks!

    From what I know, CBT is suppose to be logical. It's suppose to help the person doing it think in a logical way.

    But I already think logically... The questionnaires I got from the CBT therapists were all full of emotional based questions. So much so that I even questioned the questionnaires rather than answering them. Then the therapist referred me for a diagnostic assessment for Asperger's.

    I don't see that I would get a different result here.

    But she has written books about autism and Aspergers.

    But she studied Animal Science, not psychology or behavioural biology. She speaks from personal experiences. I would be just as well informed from reading these forums, and the posts made by the good people here.

    unfairness that poor instructions gave you when you were in college...

    I did not see this as unfair. I finished with a Distinction* grade. (note the star) which is the highest grade achievable and nobody else got that. Also, I was told that I was the first person to pass programming, and the first person to pass programming on the first submission at that level, ever, in that college. The teachers said that my work was 3 to 4 levels above the learning level. One said he wished he could just sign me off straight to uni.

    The unfair thing about academic accreditations' is that they will not let anyone skip a level. So even if I know more about computer science than the teachers, I may not jump past them. Even if someone knew more about computer science than a professor with a PHD, they will still have to take on huge debts and spend years of their lives pretending to learn something.

    Is it fair to others that they dumbed down the tasks? When I was at school, there was a room where they sent all of the underachievers and they called it "special education." Due to the way society is now, those students are now included in the mainstream classes and have a support worker (like a teaching assistant) and all the work is dumbed down to the lowest level. Which means the whole class only progresses as fast as the lowest achieving student. Fairness and equality. I strongly believe in equality, but overachievers are then held back, and there is no way to jump up the ladder.

    The first universities and academic institutions were founded by people who did not need to be accredited by an institution. Many of them probably had Asperger's.

    To some extent, study is just a con, which prays on young vulnerable students and puts them in debt. Do I really need to take on that debt and lost years? No, unless I want to teach.

    All the other students turned to me for help, rather than going to the teachers. I was happy to help them, but I was paying to be a teacher and getting no credit for being one.

    It took a toll on me.

  • Sorry I'm not sure how to make a quote on here...

    All you need to do is highlight the text you want, and the quote function will pop up

    CBT is (I found) mostly about emotions or emotional impulse training. I don't usually think emotionally on the first pass. I tend to think more with Boolean rules. Logical before emotional.

    This is quite weird. From what I know, CBT is suppose to be logical. It's suppose to help the person doing it think in a logical way. They assume that it is logical errors and irrational thoughts that make people more and more depressed or anxious. Of course there will be emotion and behaviours involved that need to addressed, but being a "cognitive" behaviour therapy it largely targets thought patterns. It could be that the person doing it with you just happens to not be very good at it or they might not have a good personal fit with you.

    Temple has HFA, Asperger's is another form of autism.

    Yes, I am aware of this. But she has written books about autism and Aspergers. For example, "The Way I See It: A Personal Look At Autism And Asperger's (2008), ISBN 9781932565720". And she talks about both autism and Aspergers. Since HFA and Aspergers are really similar, advice on one would be helpful to the other.


    Study took a great toll on me, because I take words literally (how else should I take literacy?) So if a task said "list the features of 3 software applications." I wrote the whole instruction manual on those applications. Then found everyone else had written just 1 page, and then they amended the tasks to say "list 3 features of 3 software applications."

    I'm not an expert on CBT. But I think the spirit of CBT would be like, instead of thinking about the negative impact, stress, waste of time, and unfairness that poor instructions gave you when you were in college... Consider that you must have made a really good impression to your teachers by doing so much more than others. Or consider that by doing more, you strengthen your knowledge more than other students. And, look, after what you did, they changed the wording of the tasks to make it clearer, proving that it was their fault for being ambiguous, and because of you future students will benefit from clearer instructions. All of my statements are logical, but in a more positive way of thinking.

  • Should we then call it some type of Neuro Degeneration disorder? Or should we look towards the meaning of the word Autism, and why two doctors on the opposite sides of the world came to use the exact same word to describe the condition in relation to the symptoms when it was first studied?

  • 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 looked at the stuff on here and on the other official websites. I seem to have many of the symptoms from the "triad of impairments" and secondary traits and - stereotypically I seem to have Asperger's. I will take a look at the link, thank you.

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

    The brain cells constantly regenerate. So if someone developed the symptoms of autism or Asperger's in adulthood, is it really a different condition at all? I think not.

    If I build a wall, lets call this wall - the wall of neuro development... then you come along and spray acid on the wall at random, maybe hit it with a lump hammer a bit too...

    Then you could trash the foundations of the wall, and the early parts of the development would be lost.

    The result would be, the wall would be leaning to the side or falling over, just the same as if it had been originally developed with faulty foundations.

  • Sorry I'm not sure how to make a quote on here...

    CBT is (I found) mostly about emotions or emotional impulse training. I don't usually think emotionally on the first pass. I tend to think more with Boolean rules. Logical before emotional.

    Before I went to college I found a video on YouTube posted by The Big Think, with a doctor talking about Mindfulness. I think the video is titled "how to call off the emotional attack dogs". I recommend anyone to watch it. He gives instructions on how to increase 'your' mindfulness in order to avoid situations which cause 'you' to act impulsively. He says it is a hard thing to do, and unlike riding a bike, if you do not keep practicing his methods you will lose the progress. However, I found that I automatically do what he says anyway, without a pen and paper or help from friends.

    Temple has HFA, Asperger's is another form of autism.

    I think that is the issue I got with the Nurse... It seems her understanding of autism is limited to the understanding of severe autism which causes a person to require a carer. Both the Nurse and the Doctor seem reluctant to give the diagnosis to anyone who does not require a carer... And in the USA they don't even diagnose the different forms of autism the same as in the UK now. They say level 1,2,3 the level depending on how much care a person may need, and they don't diagnose Asperger's.

    But from what I have read, the symptoms of autism worsen with age. So although I do not need a carer now, I may need one in the future. Something else I read, was a study which found that only 87% of diagnoses in children are accurate. Which means 13% of children who receive a diagnosis for an Autism Spectrum Disorder are misdiagnosed and do not have autism. Which is why I say that they should diagnose adults based on the symptoms alone, and not base the criteria on "the doctor's perception of" how they adult may have been as a child. Refusing to give an adult a diagnosis on the grounds that they do not have enough evidence to prove they are right, with the criterium used for diagnosing children, is just wrong. Because statistically they would inaccurately refuse to diagnose more adults who do indeed have autism, than they would diagnose accurately. I would like to see a study which proves me right in that assumption. How do they expect me or my parents, to accurately or fluently remember things from 20+ years ago... only fragmented information remains.

    Believe me, I have been from one side of the internet to the other on this subject.

    I am not at college now. I studied computer science. There were a lot of other students who had all forms of autism in the computer science lab. The academic realm is probably the best place to be if you want help. I wanted the diagnosis before I looked at returning to study, not because of the help it would enable me to access, but because it would make people understand me better if I could say "I have this condition."

    Study took a great toll on me, because I take words literally (how else should I take literacy?) So if a task said "list the features of 3 software applications." I wrote the whole instruction manual on those applications. Then found everyone else had written just 1 page, and then they amended the tasks to say "list 3 features of 3 software applications."

    It seems to me, from the answers here so far, that it is not a matter of going for private consultancy, but rather a matter of finding the right consultant, with the right attitude. Or getting the board of doctors to change the diagnostic manual where adults are concerned. Which is not exactly a good thing.

    Thanks.

  • That mental behaviour makes sense to me, as it's within my conception of autism.

    Forgive me if you've already indicated this, but: Are you parents still alive? Are you in contact with them? Would they be able to answer questions about your childhood? The logic of what qwerty said is why they spend so long taking a history.

    By the way, have you done any online tests like the AQ/EQ? Some of us have found this one quite revealing:

    http://www.rdos.net/eng/Aspie-quiz.php

  • Maybe you should ask for a second opinion with the NHS. I think you should be allowed to. Perhaps try seeing a different GP?

  • Well it is supposed to be biological. So if similar symptoms developed in adulthood, it may be a completely different thing than something that someone is born with. It's kind of like what you said about getting the right treatment (with your alcoholism and depression example). The cause is important for someone to get the right treatment. I agree some treatments will overlap for the same symptoms regardless or whether someone got it since childhood or adulthood, but some treatments might vary. If someone started developing sensitivity to sound after being frightened with explosions during the war, their noise sensitivity may be a result of conditioning or PTSD and not sensory processing as in autism per se. 

  • 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.

    It is possible for one person to have multiple diagnosis. So it is possible to have both Aspergers and depression. Though I agree that if it's the case, recognising both would be better than just recognising one. But it is possible that CBT may partially help even though not completely. Do you think it may be helping even a tiny bit? Or do you think it is making you feel even worse? If it is still somewhat helpful then maybe it is worth continuing it. If you think it's making things worse, then you should discuss with the person doing it with you.

    Although Aspergers cannot be cured, it is possible for someone with Aspergers to learn social skills and understand how to deal with stress. Temple Grandin is a excellent example (she often write about how her education and upbringing made her a better person). Maybe you would find reading some of her books about Aspergers to be helpful.

    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.

    It's really nice that your college had been able to provide support for counsellors and therapists, and it seems like you've had some good experiences with this. Are you still in college now? Even though I don't have a diagnosis, I've been given support for Aspergers by my university and am treated as if I have the condition and given advice on this area, such that it doesn't seem to matter much if I have an official diagnosis or not. Would it be possible to ask your counsellors/therapists to consider you might have 'possible Aspergers' or to provide relevant advice on how to deal with symptoms related to Aspergers?

    (Keep in mind that it might be difficult as it might not be the expertise of all counsellors and they may be cautious as they don't want to mistreat you with something they aren't confident you have, so don't be too angry if they aren't comfortable with it, but it could be worth a try asking about it if you think it may help you. Maybe you could say something like, "I think I might have some traits associated with Aspergers as I find it really difficult to deal with xxx, could you give me some advice on how to deal with xxx?")

  • And they may class it as a development disorder, but the word syndrome means a collection of symptoms, not a collection of causes, or collection of childhood memories.

  • From the looks of it at the surface, that could cost me thousands of pounds.

  • You did not offend me at all.

    Slight smile

  • sorry Aspie is just a shortened term to save typing hope i didn't offend you

  • I might give you an answer to your current question some time next week. At which point I won't be able to stop having the conversation with you - in my head, but you won't be there to hear the answer.

  • I agree it's a tricky situation. I am still waiting for an assessment myself, and actually struggled for years wondering if it's at all even worth going through it as I won't be able to bring my parents to the assessment. I think you should be allowed to get a second opinion, or maybe you could try a private assessment.