ASD Diagnosis - providing evidence

Post Reply New Topic

Hi, I'm fairly new here. I am a 22 year old guy from the UK. I was assessed for AS when I was 14, but was told at the time that a diagnosis wouldn't be of any practical benefit to me - a conclusion that I've always been unhappy about, but it's only in recent months that I've felt able to reconsider assessment.

I've contacted the appropriate people in my area, who have come back and said I need to provide them with evidence of my impairments in social communication, interaction and imagination, as well as telling them why I think a diagnosis would be beneficial - this evidence will go to a panel, who will decide whether I 'qualify' for further investigation/diagnosis. Now, at this stage I am fairly confident that I have an ASD, but I'm very worried about this evidence they want me to provide because I don't want my case to be dismissed simply because I haven't been able to communicate my difficulties effectively.

Does anyone have any tips/advice on how to tackle this evidence?

Thanks in advance

The AQ test might be a start, and I suppose any self-observations that fit well with the diagnostic criteria, especially if corroborated by somebody who has known you for a long time.

It seems rather lazy of them to expect you to guess what they want. My diagostician led some preliminary question-and-answer stuff to find out whether it was worth doing the entire diagnosis. Perhaps you could ask them what form they want the evidence?

Thank you for replying.

Yes, it's quite frustrating to feel as though I'm doing their work for them. I know it works differently in other parts of the UK - for instance, the CLASS clinic (where I was hoping to be referred) apparently send out a few questionnaires analogous to the AQ and EQ and such, which seems a more sensible way of doing things as it doesn't rely on the patient's ability to fit their difficulties into diagnostic categories with no training. I know I have difficulties, but I'm not completely sure of the difference between social interaction and social communication difficulties (for instance) so am not sure what evidence to provide for each category.

I plan to err on the side of caution and provide as much information as I can think of that might be relevant, because I'd rather do that then risk not giving enough/the right information. At the moment I'm going through the various books and web links I have to try and come up with examples that are relevant. I suppose I will also have to ask my parents - they're probably better-placed to comment on any 'unusual' features of mine that I'm unaware of.

I agree with ToughDiamond, it sounds like these people are being rather lazy and getting you to do part of their job for them. Phone them up and ask for specifics - what do they accept as "evidence" of social impairment, etc.? Do they want physical evidence, such as school reports, or are they content with self-reporting, e.g. online quizzes, you describing incidents from your past?

They may also want to hear from a relative (parent or sibling) about your early childhood. Do you have anyone who remembers you as a young child and who would be prepared to testify on your behalf?

EDIT: Okay you've made another post... My advice still holds though. It irks me that you have to go through this; luckily I was never faced with this nonsense, but that doesn't help you. Unless you can get a referral to a different clinic, you're stuck with providing whatever these people want from you.

From what they've said, it seems that self-reporting is adequate at this stage (the woman who emailed me said that I could prepare a document to enclose with my GP's referral). I assume they will want to hear from relatives when (if) I get to the in-person assessment stage, as that's how other assessment units seem to work. Though actually, having reread the email just now, I'm even more confused about what these people want and why. I'll spare you the details because I'm not sure if it's actually interesting enough to warrant inclusion, but it looks like the place my referral will be sent doesn't actually assess people itself, but outsources the assessments somehow... ugh, I don't know. Thank you for responding, anyway, and it's nice to know other people think this is a strange way of doing things!

IME the AQ test is likely to be considered insufficent.


Especially if they are asking in a highly unclear and ambiguious way. Even more so than the AQ-10, where two of my answers were more "it depends". If anything they almost seem to choose to ask in ways which are specifically unfriendly to AS people.

Have you contacted the National Autism Society? Can they provide some guidance or a support person to help you negotiate these barriers? It sounds all a bit off to me, though I don't know how things work in the UK; asking for past testimony from others (schoolteachers etc) violates your privacy rights as an adult; and it would rely on memory - and memory is notoriously unreliable even for witnesses of dramatic events, let alone relatively run of the mill ones. Memory edits, invents, amends and changes in other ways over time in ways people are not even consciously aware of.

Sounds like you've encountered bureaucratic bullpooh to me. Shame on them. I am very sad to read things like your experience, it really exasperates me.

When I went in for my assessment, I just wrote out a document containing bulleted examples of all the areas in which I was out of the ordinary, as they pertained to the DSM V diagnostic criteria (I think in the UK they still use the ICD 10). For example, I had the heading: Restricted/Repetitive Patterns of Behaviour; subheading: Special Interests, then provided examples of that specific trait for each stage in my life (e.g age 0-3, 4-6, 7-9 etc.) It ran ten pages long, I had my mom read it to make sure she agreed with everything I said, then she signed it to say she'd read it, and I just brought it in to my evaluation with me, along with my results for the online RAADS-R test, and a list of symptoms as they present in females (in case my diagnostician hadn't run into a female aspie before), highlighting the ones I portrayed.

Whenever I try to answer a test of that kind, I always want to get it perfect, but I can't because I'd have to tick between the boxes to do that. To mitigate the inaccuracy, I try to alternate between erring on one side, then the other, so that the errors should roughly cancel out. I often have experiences like that when I try to obey the instructions of others.

I was recently diagnosed, by the CLASS Clinic that you mentioned. The process was fairly easy - asked to be referred by my GP, CLASS Clinic sent me a lengthy Questionnaire, which included a separate one for Parent(s). After a couple of months they invited me in (to the clinic in Cambridge; not far from you), after 3 hours the Professor diagnosed me there and then.

I did have other reasons to ask for referral, my middle child (7) is on the spectrum, was diagnosed at age 3, and during routine blood tests for his diagnosis, a chromosomal abnormality, linked to ASD showed up in his and my blood.

I think the difficulties I'm having are because there is no facility for assessment and diagnosis within my area, and therefore the NHS needs to pay for me to be sent out of the area. Presumably they don't want to have to do that, and so have this screening process in place to try and dissuade people. Perhaps I'm being overly cynical, but that's how it seems to me, anyway! If it comes to it and they refuse to assess me properly, I suppose I can always wait - fortunately I go to university in Cambridge and so could be referred directly to the CLASS clinic when I return in Oct 2015.

@badgerface, were the questionnaires they sent you the AQ, EQ and FQ? I have downloaded copies of those from the CLASS website, and if they're routinely used in screening, it might be worth my while including my scores in addition to the tremendous list of bullet points, to bolster my 'evidence'.

I can't remember what they were called, but that definitely rings a bell. If they are the standard Questionnaires they send, then I would have thought so.

If you have been having "issues" surrounding it, then I think it might help speed things along; I had been signed off with depression a few times, and my answers on the Questionnaire indicated me as a "mild suicide risk". If you emphasise how this is having a negative impact on your life by not knowing, that may help.

I think you could be right. The NHS is cash-strapped and its managers are very keen to balance their books. Lucky you have an alternative through Cambridge.

I can't see why the same bias would be in the main diagnosis though, at least in the UK where AFAIK neither the government nor the NHS spends money on ASD people.

My issues with the AQ-10 is that the answer options are "strong yes", "weak yes", "weak no", "strong no". But the scoring is on the basis of "yes" or "no". With many of the questions having a fairly broad scope. Without allowing for things like being able to return to what you were doing being dependent on both what you were doing and the nature of the interruption or that being able to work out the intention of characters in a story can depend on the story, characters, authour's intent and reader's story preferences.

Utterly ridiculous.



Again, this cranks me. What about your own memory? Or is it only other people's memories of you which are flawed?

Personally, my mum's testimony of my early childhood was invaluable at my assessment. It's not like she remembers loads, or pretended to remember loads, but there were things she mentioned I have no memory of whatsoever - such as being kicked out of nursery school for not getting on with the other children.

Look at your posts here or in other forums, social media etc.