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subtleotter

Hi all, just wanted to write in with a story about not being diagnosed and my ultimate frustration with my assessment. At the end, my assessor confirmed that I was 'definitely neurodiverse', but despite the social problems I reported having, I had gotten on the 'wrong horse' and needed an ADHD assessment. I'm alright with going for an ADHD diagnosis and fully believe that I also have that, but the assessor made a number of flippant comments, such as:

- I cited being unable to see the 'grey' areas, and finding a lot of benefit in therapy to be able to see other points of view; the assessor told me that ASD folks can't see the grey area

- I cited video games as being one of my special interests; the assessor commented that 'video games are not a traditional autistic special interest, the dopamine release is more indicative of ADHD'

- successfully having two long term friendships apparently also disqualifies me for ASD!

I do think that my ADHD traits tend to hide the social ASD struggles that I feel. People are willing to overlook when I go nonverbal at intense outings if the rest of the time I'm usually bubbly and outgoing, or think it's just me being a b*tch when I get overstimulated and very snappy and angry. I score abysmally low on tests involving empathy (and expressing it day-to-day), but because therapy helps me, I'm not autistic. I've played the same 20-30 story-based video games on repeat my entire life, but that's not an autistic special interest...

The lack of diagnosis was disheartening, but realising I have to sit in another queue for an ADHD assessment was even more disheartening. What if I get to that assessment and they say 'you've gotten on the wrong horse, have you considered an ASD assessment?' 

Has anyone here paid for a reassessment with any success? Would it just be more fruitful for me to go for an ADHD assessment and call it quits with ASD? The most important thing to me, really, is the personal clarity of a diagnosis. I feel so strongly that both apply to me, but I'm willing to just 'self-identify' and keep using the tools I've found helpful for ASD if push comes to shove, but I do ultimately feel like my outcome is incorrect... ): Any support is welcomed with open arms, as I have been struggling a lot with this.

  • Thank you for sharing 

    I am struggling with this at the moment. I have just been told that because I can "communicate well and participate in banter and colloquial language" that I don't meet the criteria for an autism diagnosis. Also I'm married and have a baby so I therefore have a good understanding of social and romantic relationships 

    I too believe I have ADHD and autism and that they hide eachother.

    I'm not sure what my next steps will be but at the moment I feel like it isn't going to change my self diagnosis as, like you, it was only for my own clarity.

  • in reply to Iain

    I agree with you Iain that it takes an experienced assessors who are trained specifically to diagnose autism. When I was looking for a suitable private autism assessment last autumn, there were too many advertising that didn’t seem to adhere to the NICE guidelines, which the NHS uses. I had two assessors and they used ADOS-G and DISCO tools, followed by a team meeting between them. 

  • in reply to subtleotter

    This does mirror what I have heard from two psychotherapists (both with doctorates in psychology) when it comes to the limitations of the assessment process.

    It seems the more normal a life you have lived, the harder it is to meet the criteria for a diagnosis, so those of us who have become adept at masking and scripting find it hard to be diagnosed even if we are just as affected by the same traits.

    It takes an experienced assessor to dig deep enough to see through the masking and scripting for these cases and I think there are not enough of them available yet to stop cases falling through the gaps.

    What makes it more challenging is many of us try to seem "normal" in the assessment process rather than unmasking and being brutally honest - we are almost defeated by our own self defence mechanisms.

    Have you tried any of the free online ADHD assessment tools? These may be able to tell if you are indeed on this part of the spectrum or if the traits are autistic ones - there are a lot of crossovers in these traits which can make it difficult to diagnose properly.

  • in reply to Iain

    In different words, but yes, they used my success at socialising as 'proof' that I didn't fit the ASD criteria. I gave several examples of social situations that I struggled with during the assessment, and during the 'results' bit, they told me that 'you can socialise well - although you've said with difficulty.' 

  • in reply to HergĂ©

    Thank you for the welcome!! It's quite wacky that there are so many hoops to jump through to get help in the UK. Imagine if they just referred us on immediately when a professional recommended we need more/different testing and care!

  • in reply to ArchaeC

    Thank you for the welcome & your comment! I would definitely try to go for a different RTC service if possible, and will definitely be going somewhere for the ADHD diagnosis. It seems like Psych-UK (where I went) is struggling at the moment...

  • in reply to Lotus

    Thank you so much for this comment, it really, really makes me feel seen -- I think I could have practically written the first paragraph myself! I take great comfort in our shared experiences.

  • in reply to Bunny

    Thank you very much for the welcome & the information!!

  • subtleotter said:
    successfully having two long term friendships apparently also disqualifies me for ASD!

    This is interesting. Was it the assessor who said this to you?

  • Hi and welcome.

    I had my ASD assessment a couple of months ago and the results came through just before Christmas. It confirmed that I was autistic but also stated that I showed a strong indication of ADD/ADHD and that I should be formally assessed for that.I'm torn on whether to go for another assessment just yet. If I also have features of ADD/ADHD would it really alter anything? I'm now 50+ and have bumbled though life. It was only suggested that I may be autistic as I have treatment resistant depression and anxiety, which I obviously still have.

    Good luck with your decision.

  • Welcome to the community. I am sorry you were dismissed with those comments from your assessor. From accounts of people I know who have had a formal assessment and from my own experience of having gone through assessment, it doesn’t sound as if your assessor was knowledgeable about autism or professional. Good formal assessments should follow strict protocols and would adhere to NICE guidelines which are the gold standard in the UK. If you go for another ASD assessment, the assessor should be testing for autism but may pick up indications of other neurodiversities. If following the assessment the assessor suspects ADHD, you should be signposted on to the correct service. I can’t advise you whether or not to go for another autism assessment, but if you do, would it be possible to get tested elesewhere? 

  • Hi and welcome to the forum.

    This is one of the reasons I chose not to go for an ASD assessment. I don't obviously stim, can do eye contact, worked either full or part time most of my life until I retired, and I'm in a long term relationship. So even though I score 42 on the AQ50, struggle with non verbal communication, suffer from anxiety when things are unexpected and unpredictable, get overstimulated and exhausted from big social events, struggle with emotional control and have obsessive special interests, I thought that an assessor would not think I was "autistic enough" to be labelled ASD.

    After much thought and discussing it with other people on this website, I stayed self diagnosed as I didn't want to go through all that stress of an assessment to be told I was wrong, and therefore still not be able to explain why I felt "different". I understand the wish for clarification, but whether you get that or not, you are still welcome here.

    (By the way, video gaming is one of my interests too, and I also have a limited number that I like to play over and over again)

  • Hi and welcome to the community!

    I'm sorry to hear that you didn't get the outcome that you believe you should have done.

    The NAS explains your related options here - including raising your concerns directly with the assessors and/or potentially requesting a second opinion via your GP - along with providing links to further advice:

    NAS - What happens during an autism assessment > Assessment results and report