Adult Autism Assessment (Diagnosed ADHD) — Scope | Disability forum
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Adult Autism Assessment (Diagnosed ADHD)

lex_luthor
lex_luthor Community member Posts: 1 Listener
Hi everyone, my name is Lex. I’m 22. I recently joined the Scope online community. 

I’m currently in the middle of my Autism assessment and have had my Developmental History Appointment with a second Screening Appointment to follow this week. I’m pretty certain I have Autism as, I think, I’m clearly displaying signs of autistic burnout. I’m incredibly apprehensive about whether I’ll be officially diagnosed as autistic though. 

 I was diagnosed with ADHD in Sept 2021 and was much more confident about receiving that diagnosis. I had a little bit of anxiety right before my appointment but that was it.

My apprehension right now is about how little I overtly display autistic characteristics. I feel a lot of my struggles are internal and to do with social interaction. They’re using the ADOS to assess me and I’ve submitted a CAT-Q I took as well, which I scored incredibly highly on. I’ve read things here and there that state that, despite referral, a fair few women still go undiagnosed after undergoing the ADOS as they don’t score highly enough on it. This has increased my apprehension even more. I desperately want to get an official diagnosis as it would open more doors for support with burnout as I currently don’t receive anything for my needs with this. I’m at university and trying to handle the symptoms as best I can independently but am woefully unable to. 

Additionally, my care co-ordinator on the CMHT hasn’t been the most receptive to my referral. I have an official Borderline Personality diagnosis that I think is wrong. I’m working with the Autism diagnosis service to make sure, if, I have a report at the end they advise this diagnosis be removed. Every time I try to ask about how this would work I get roadblocked. I fear this is because a symptom of Borderline is seeking other diagnosis. This is incredibly frustrating as I feel like I’m being labelled difficult or avoidant of treatment because of it. I’ve not been given any information regarding how I could potentially get rid of this diagnosis and maybe seek out another mental health diagnosis instead.

If anyone has any advice as to what to put into the questionnaire or struggles I may have  that I should disclose during the appointment I would appreciate it. I feel like I need direction about what behaviours I should highlight so I don’t miss anything that could be crucial. Also any advice on being heard when misdiagnosed would be appreciated as well.

Thanks x

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 7,316 Disability Gamechanger
    Hello @lex_luthor

    I love the username! A DC fan?

    Welcome to the community! :) Thank you for sharing your story with us. Sorry to hear you are feeling a little apprehensive. I would explain how you'd feel the ADOS assessment is something that doesn't diagnose woman as thoroughly. The National Autistic Society may be able to help more with this. They said:
    The ADOS tool differs from the other tools described here as it is not based on developmental data and therefore only looks at current behaviour and skills. 
    I am not autistic so I am unable to advise what to put in the questionnaire. What I would advise is to have any notes from previous assessments or the GP so you can give an effective timeline. If you are worried they may see you as "trying to get another diagnosis" because it's a symptom of Borderline Personality you could reveal any missed opportunities for different assessments in that timeline that actually could then be linked to a different diagnosis. 

    Please keep is updated :) Sending my best! 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Adeline
    Adeline Community member Posts: 141 Pioneering
    I have this same worry and am not bothering going through the assessment for autism as the diagnostic criteria still hasn't been updated and doesn't reflect current research. I know I'm autistic and that's enough for me. Support is non-existent in my area anyway so I don't see any point in following through with official diagnosis. ADHD I went through assessment for as it was the only way to access medication. 

    My two eldest daughters (teenagers) are both on the spectrum and while they did do an ADOS assessment, the clinicians were brilliant and explained there is a growing field of study around girls, particularly 'high attaining' girls on the spectrum and there is much more understanding of it now. While masking is not formally recognised in the diagnostic criteria the assessors were brilliant in seeing through attempts to mask and picked up on things myself and the girls weren't even aware of.

    It's usual to be nervous but as much as possible, be yourself in the assessment. The clincian's are amazing and seeing the things you don't even notice.

    I'd also leave the BPD diagnosis alone for now, pushing already to ask how you change that or get it removed before you've even been assessed is going to be flagging it to them as maybe you're just looking for any other diagnosis.

    However, I really believe a lot of women (myself included) that were diagnosed with borderline personality disorder were actually un-diagnosed ASD /ADHD and often suffering burnout and trauma response as a result.
    Of course it's possible to be both and the criteria for all three are all very close.

    Good luck @lex_luthor.


  • Louisa_88
    Louisa_88 Community Volunteer Adviser Posts: 3 Listener
    Hi @lex_luthor!

    How have you been feeling with this now? This sounds like a really stressful situation, especially on top of what you need to do for university. I am wishing you the best with everything

    I haven't done the ADOS, so I can't comment on this unfortunately. I was just wondering, have you asked them for more information about what the ADOS entails? If you haven't already done this, that could help you to seek some reassurance - autistic people are often apprehensive about the unknown so I'm sure you wouldn't be the first to express nerves about it or want more information! You could also share your fears regarding this test. The test is (I've read) more accurate if you don't know much about it going in, so they may not say much about what it actually entails, but it might help to alleviate some concerns.

    You did also score highly on the CAT-Q, so they would take that into account regardless of how your ADOS assessment goes when assessing you.

    It is also worth keeping in mind that if you don't get a diagnosis due to the ADOS results, you can ask your GP to refer you to a separate team, or ask for a second opinion. You also have the right to request a copy of your assessment after, and you could talk to your GP about what you think is wrong with it, if you think there is anything wrong with it. Hopefully, though, you won't need to and your assessment will be easier than you are expecting!

    Regarding advice about what to put in the questionnaire, or struggles that you may wish to disclose in the appointment, what may be helpful is keeping notes of any struggles you can think of, when you think of them. This is something I do due to my poor memory which gets worse when I'm stressed out. It's easy to forget some of the struggles you've had and wanted to bring up when in an assessment situation, but writing them as and when you think of them, and taking these notes with you can help to alleviate some of this.

    Finally, regarding your BPD diagnosis, it may be easier to put that to the side, only for now. The autism assessors will likely not also be experts on this or how to go about this, but an autism diagnosis (in addition to your ADHD) may make it easier to explain why you feel you were misdiagnosed. I believe you would need to look at the justification of the BPD diagnosis, make a case against it, then ask to be reassessed.

    Hopefully I have answered some of your questions in some way, but let us know if you want to discuss anything else. I am wishing you all the best - take care.
    Community Volunteer Adviser with professional knowledge of neurodiversity.

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