Does identity stump diagnosis?

This has been circulating in my head. A lot. Ok obsessively. If you identify with something but you’re diagnosed otherwise, is this ok?

Some of you lovely bloggers might have seen my blog about the diagnosis I got from the psychologist when I went for the Autistic Spectrum Disorder (ASD) assessment two weeks back. I was told I was on the border of Aspergers after getting 32/50 on the AQ test but that Alexithymia, Sensory Processing Disorder & severe Social Anxiety were prevalent. I’m basically on the border looking in.

However, thanks to amazing bloggers such as Everyday Aspie, To Aspie or Not to Aspie, Emerging From The Dark Night & That Aspie Lady, I realised I have so much in common with them and can relate to so much of what they blog about.

I chatted with my partner (for about the sixth time) who’s heard me obsess about this for weeks.

When I say ‘obsess’ I mean get upset, get angry, keep asking questions & become agitated that numbers mean I can’t be who I think I am. He said ‘What does it mean if you were? What can you do to help yourself? If you identify with it, it can’t be wrong’. He’s very wise.

He’s also right. If I need to use the same Dialectical Behavioural Therapy (DBT) tactics for myself anyway, surely identifying with ASD/Aspergers would be ok?

I agree with him but I don’t want people further along the Spectrum to think I’m just saying it. I really genuinely feel that the number on the test doesn’t truly show the extent of me.

I’m obsessing. I apologise. I know I am. I can’t stop thinking about it. I’m reading up on ASD, finding variations of traits, writing examples & sending to the psychologist, Googling, buying lots of books (Amazon are lucky to have me as a customer) & telling my partner for the millionth time all about it, despite him knowing the ins & outs.

It’s like I’m looking for permission from someone to say ‘It’s ok, your 32 counts for something. You are on the Spectrum.’

So, identity vs diagnosis? What are the thoughts? 💭

18 thoughts on “Does identity stump diagnosis?

  1. I can relate with this a lot. I’ve been basically doing the same thing for a long time now in regards to going over everything ASD related. I have a thick binder in which I printed out 40 scholarly articles so I can more carefully analyze everything. I was not officially diagnosed with ASD (I was diagnosed with a list of other things), but it’s what I relate the most with, and what I identify as. My therapist doesn’t diagnose ASD in adults, but he supports me calling myself autistic and never shuts me down when I talk about it. It took me a while to accept that while I may not have a formal diagnosis, I have done years of research and know myself well enough to identify as such without one. Also, I was in a DBT group twice, and a lot of the things I learned in that group have really helped me a lot for when I get overwhelmed.

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    • Wow, thank you so much. This is what I’ve been doing. I’ve emailed my counsellor to ask that same question. How do you feel about it? Reading what you’ve written makes me feel better about identifying with ASD 🙂 thank you 🙂

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  2. It seems to me that in this type of situation what matters most is what you’re experiencing and what might make it easier to manage. A numerical score and an arbitrary cutoff will never be able to fully capture the whole picture.

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  3. These are tough questions you are asking and your brain needs to process them to a point where you will be able to come to a resting placet with it. As I would put it “your brain is on fire”. But the fire will go out. I know it’s hard at this point. I’ve been there so many times.

    Personally, I have members of my family who are both diagnosed and undiagnosed but if we are autistic, we are autistic, regardless of a medical assessment. If is clear that our brains were all cooked in the same kiln. I have been plugged into the mental health system at different times in my life and no one picked up on it back then. It was anxiety, depression or dysthymia. I was given pills that didn’t help.

    My mom pushed my dad to get diagnosed (which he did) at around age 70 in hopes pills might help his ADHD. They didn’t. But we all knew there was something different about us, regardless of what a professional told us. Isn’t going to that professional (especially if you haven’t seen them in the past) kind of like going to a stranger to convince them of something that you already know about yourself, especially it they don’t even know you!?!?!

    This is what I’m wrestling with in my youngest daughter who is 15 and is clearly HFA, just like me. We are pursuing the official diagnosis for her because of problems at school. If there is support and additional understanding for her then it is worth it to me to go to that pediatrician to try to convince them of what we already know. If getting her the diagnosis can help her avoid some of the pain I experienced at that age and beyond, I will do it.

    We know there can be stigmas attached but ‘what is’ is still what is.
    You know who you are deep down inside. I always did too but never knew why or what it was. Two months ago I found ‘my people’. The more I read the more I realized this and you will too. Keep seeking and you will find.
    Just go easy on yourself and try to give yourself a break now and then before your brain explodes.
    ps. Thanks for the mention – I’m so glad I can help
    pps. Love the little drawings!
    ppps. Phew! That was a long reply.

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    • Aw ❤️ thank you so much for your reply. And thank you for taking the time to comment too! I really appreciate it & absolutely need to get past the fire part. I feel reassured by yours & your family’s experiences & I really hope your daughter gets the right support. It sounds like she’s got a fab Mum supporting her! No worries about the mention & thanks for the reply too! My partner found the drawings rather funny 😂 x

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  4. I can identify with this! The whole idea of my being on the spectrum was raised something like fourteen years ago. Since then I have had two separate assessments and been told I have a lot of ASD symptoms but not broken down in the right number of categories to ‘count.’ On the other hand, I have had a psychiatrist and a psychotherapist, both of whom saw me for much longer than the psychiatrists who did the assessments, who think I probably am somewhere on the spectrum. I’ve also read a lot of books and blogs about ASD. Sometimes I say, “Wow, that’s completely me!” and other times I say, “Wow, that’s not me at all.”

    I try to tell myself it doesn’t matter. I don’t think there is necessarily anything I would be doing differently if I had a diagnosis, except maybe to ask if I can get out of doing a couple of things at work, but even then, I probably wouldn’t do that, as it would probably be unreasonable of me and I wouldn’t want to make a fuss anyway. I guess sometimes I want other people to know I have issues to apologise for some of the things I do/don’t do/do badly, but I don’t really tell people about my depression (which has a bigger negative impact on my life) even though part of me would want to, so I probably wouldn’t tell people about the ASD either. But it would be nice to know sometimes, because I like labelling things/myself.

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    • Can you? I identify with many things you write on your blog so this means a lot, thank you. Oh wow really? We’ve had similar experiences! I’ve done the same with reading about it too. My partner has said there are lots of things that are ‘very me’ 😛 I think I’m the same as you. I like to be something if that makes sense? I’m like the whole ‘square peg, round hole’ analogy & this seems true for diagnosis too! I don’t fit, like yourself, into one box! Thank you for your comment & for reading my blog too 🙂

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      • Thanks for saying you identify with things I write as sometimes (OK, often) I worry whether anyone understands much of what I write.

        Yeah, it makes sense to want to be something. I know labels can be limiting, but sometimes they’re helpful to understand yourself.

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      • No worries at all 🙂 as writers, I think we have that innate worry ‘what if no one understands or reads what I write?’ Absolutely trust that people do & it helps 🙂 it helps me to have even a little label 🙂

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  5. I’m currently waiting for my assessment and I really think it could go the same way for me. I’ve heard that the tests are designed around men and are less useful for identifying women, which worries me if they centre the assessment around them. I can appreciate all your confusion and feelings since, because if it happens with me too I don’t know where that will leave me. Since recognising I’m likely autistic (or closely related as I keep putting it) my life has improved so much, I’ve spent 40 years hiding myself because I didn’t fit in at all, when I started reading the blogs of autistic women they sounded just like me and it was wonderful, for the first time ever I realised it’s ok to be me. If the assessment says I’m not, knowing me I’ll wonder if I’m just fooling myself and don’t belong somewhere after all.
    For what it’s worth I think you are, and it’s worth remembering that it’s only one persons opinion, the professionals understanding of autism seems to be evolving rapidly right now – a different professional, in a different area might have absolutely diagnosed you x

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