Requesting a diagnosis when AQ-10 is negative

Hi there,

I've wondered about whether I might be autistic for a while but got put off by a child psychologist (who does ASD assessments!) who told me that I can't possibly be because previous psychotherapy had helped. Now someone I'm working with has suggested it to me again. It does feel like it fits, but when I do the standard AQ-10 screening tool I only get 5 (although I come out with at least 35 on the full AQ test). I can self-refer to my local NHS assessment service but I'm worried that if my AQ-10 is negative they won't give me a second glance. Does anyone have any thoughts?

Thanks,

Liz

  • Thank you, this is very helpful. I'd looked at the original paper where Baron-Cohen et al introduced it, but it's helpful to have this further info.

    I do find the self-report things tricky because I've learned so many skills to cope! I've tried to fill out the self-referral form (which thankfully does include more than just AQ-10) as best I can - it has a section where I can answer the question "why do I think I'm autistic" which means I can include the things aidie suggests above. Sometimes it's tricky because there are some things where I don't know if they're autistic traits or not - for example I tend to forget that other people don't know how I think/feel about them and that I need to actually tell them with words, not just when I'm so overcome with feeling I need to express it. I keep worrying that I will have left something really important off!

  • The research on the effectiveness of the AQ10 in predicting a diagnosis is mixed. There is a 2016 paper by Ashwood et al where they found a high number of false negatives when testing the AQ10 as a predictor for diagnosis (i.e. people who scored below the AQ10 cut-off then went on to receive a full ASD diagnosis).

    There are limitations with self-report tools (I wonder how I'd "score" if I took the test on a different day or how my scores would vary depending on my mood) and I'd suggest the AQ10 couldn't be used in isolation - especially if you are experiencing other things common in autism. There's were a lot of things which made up part of my diagnosis which the AQ10 doesn't capture. My terrible inability of taking on board new information delivered verbally or how if a group of people are in animated conversation I can't engage emotionally because I have to concentrate to keep up or how I struggle to mentally put aside work for the next day regardless of how much progress I've made on it because it's "unfinished". 

    Treat it for what it is - a borderline score which might well be different had you had done the test on another day. Your score on the AQ50 (there's similar research on this as well) suggests to me you shouldn't be put off by your score on the AQ10 - and there's your own experience to take into account.

    Any decent clinician/assessor knows the limitations of these tests and would weigh up all the evidence not just make a decision based on a single score. 

  • They might, although GuyBrush’s point about it being possibly biased towards a typical male presentation is relevant. Given my historic interpersonal difficulties, I don’t know if my ability to e.g. infer intention in stories is a learned survival mechanism (which would be consistent with what I’ve read of the typical female autism phenotype). But I guess all I can do at this point is try and see where I get to. (And try to trust the process, eek.)

  • This is a helpful question - I think I’m looking for validation, that maybe not all of my mental health issues exist because of childhood attachment problems but that maybe some of them are because of the ongoing trauma of trying to fit myself into a society which isn’t built for me to navigate. The other aspect is that it might open up other ways of coping/functioning better, either through better understanding of myself and my traits (in which case maybe going through the diagnosis process is useful even if I don’t get the “label” but do get insight), but if I do get a diagnosis there potentially other support I can access at work to help me.

     Your observation about AQ10 being chosen with a typical male presentation in mind rings true for me. I looked up the paper it’s based on and while they do have equal numbers of men and women these were obviously women diagnosed prior to 2012 (potentially even much earlier if they just reused their original data) and it came from Baron-Cohen (him of the “extreme male brain” hypothesis). But I should probably not try too hard to discredit his stuff to the diagnosticians, however much I might want to pick holes.

  • I guess that they might find that you are borderline??

    I was diagnosed with ASC Level1 (Asperger's) in 2019 (at the age of 55) and I score 10 on the AQ10 test and 43 on the full AQ test.

    A score of 5 on the AQ10  does sound low??

  • ask your GP for a referral to an autistic assessment

    heres the overall plan of what u do

    Make a list of reasons why u think u are autistic.

    include blood relatives in your family who are autistic or adhd or called weird/different

    and a list of occasions when u have been called weird, autistic, different

    the list should be electronic ie so you can email it to anyone who wants it.

  • The way I see it (but I’m happy to be corrected if wrong) the AQ-10 is likely a time saving exercise so the GPs don’t have to score the whole thing. So someone has chosen what they think are the most relevant questions in different areas but probably using a very typical male presentation as the basis. If you have scored over 35 on the full test I think it’s still worth filling out the self referral and mentioning that score as well they’ll be more likely to accept you. But as Dawn said as well what are you wanting from the outcome? Do you need support? Are you desperate for an explanation about yourself so you can move forward or are you just curious but will carry on regardless?as for the comment from the psychologist about therapy helping I think that may be reference to autistic women in particular being diagnosed with other conditions instead but treatment not helping because they’re actually autistic. Although I’m sure it is possible to be autistic and also have another condition in some cases

  • Thank you everyone, these are helpful responses. Given I can self refer I will fill out the form (because it includes more than just the AQ10) and see what they say.

  • nicely put

  • That's interesting that they're saying you can't be if pschotherapy helped - I don't know what to make of that, but it's very interesting.

    As for the AQ 10, I think it's just a guide for GPs to refer. I had no clue what to do with that question 1 about noticing sounds others don't...how do I know what others notice? I don't know whether the NHS would assess or not with a score of 5, but a private assessor might not ask for it.

    I guess, the point is, do you think you might be autistic and does it help you to have an assessment? I guess, even if sub-spectrum with traits, it might be useful to know what those traits are in order to move forward.

  • dont worry about the AQ 10 test. its too small . The fact someone at works suggestions u r is quite significant. What do u parents or siblings think of such a suggestion ( that u are autistic ) ?

  • I wasn't asked about my AQ score at a private assessment - I don't think it's very accurate. Tell them the full result first if they ask.