Embrace Autism has a great section on deciphering the DSM criteria for autistic people which gives examples of how traits manifest which can help with answering the questions in an autism assessment. It's in the 'Decoding autism in the DSM-5 section' of the Blogs.
I hope this doesn't come off as dismissive, but I think it's important to remember that the vast majority of the medical community is still viewing autism and other neurodivergence through the lens of pathology. The framework was not designed with the intention to understand, it's meant to group people together based on external behavior. Mainstream diagnostic assessments and the DSM weren't developed by us or for us; the system is functioning as designed. Even though those are the paradigms we're working within when trying to get a diagnosis or treatment, it's important to separate our own understanding of ourselves from what the medical model of disability tells us.
I’ve never seen this written about before but it’s my exact experience as well! So unsurprisingly I didn’t think I was autistic or ADHD from doing all the online questionnaires. Thankfully I have read about the broader experiences which match far more closely with my own but I completely agree, these need to be adapted asap.
It’s not just diagnostic questions. Every time I have a medical appointment, a follow-up questionnaire comes through with questions like “Did staff treat you respectfully” and “How long were you in the waiting room.” Questions that assume I was paying attention at the time and that I’m completely unable to answer, especially given that I’m incapable of even walking through a medical center without getting lost. Is an inability to respond to questionnaires an autistic trait?
Not in those words, as far as I know, but it makes sense that given how much more mental effort the same sort of tasks take for us, we might not be taking note of the same things.
The specialist I saw has a son with autism. She’d ask the standard question and then give me nuance. Ie asked about socks, do you have issues. Immediate nope. Then she added nuance about texture, seams, sensation, etc. then I was like “oh I most certainly have issues because I need x things to be perfect in order to wear them”. She’s the only reason I got a diagnosis I’m sure.
Standard questionnaires do not translate at all & are extremely difficult to comprehend & answer. (Often I'll end up with more questions about the questions to understand what is meant), or it's not that simple to answer, especially being later life & other various experiential factors!
Unfortunately, I think the DSM and all Western medicine is based on the white male. Have you read Devon Price PhD's Unmasking Autism? He talks about how your Autism is diagnosed/treated is related to your ethnicity, gender, and social class. It is disgusting and outdated. IMO the DSM needs to be completely redone, and the old volumes need to be burned. White males are only a fraction of the population!!
Amen, amen, amen
🙏🏻
Embrace Autism has a great section on deciphering the DSM criteria for autistic people which gives examples of how traits manifest which can help with answering the questions in an autism assessment. It's in the 'Decoding autism in the DSM-5 section' of the Blogs.
I hope this doesn't come off as dismissive, but I think it's important to remember that the vast majority of the medical community is still viewing autism and other neurodivergence through the lens of pathology. The framework was not designed with the intention to understand, it's meant to group people together based on external behavior. Mainstream diagnostic assessments and the DSM weren't developed by us or for us; the system is functioning as designed. Even though those are the paradigms we're working within when trying to get a diagnosis or treatment, it's important to separate our own understanding of ourselves from what the medical model of disability tells us.
Oh, totally. I know it’s functioning how it’s meant to, I just don’t like it 😂
Wow, those assessment questions ARE bad - and biased. Great call-out, Melanie!
I’ve never seen this written about before but it’s my exact experience as well! So unsurprisingly I didn’t think I was autistic or ADHD from doing all the online questionnaires. Thankfully I have read about the broader experiences which match far more closely with my own but I completely agree, these need to be adapted asap.
Related to being called a smartass... I have a vivid memory of being about 7 and getting a maths question in a test incorrect.
The question was ‘subtract one quarter from four.’ I answered ‘3’ instead of 3.75. It’s that darned literal thinking again!
Not your fault they worded it ambiguously!
OK, instant subscribe from me. H/T Kate Horowitz.
Thank you!
It’s not just diagnostic questions. Every time I have a medical appointment, a follow-up questionnaire comes through with questions like “Did staff treat you respectfully” and “How long were you in the waiting room.” Questions that assume I was paying attention at the time and that I’m completely unable to answer, especially given that I’m incapable of even walking through a medical center without getting lost. Is an inability to respond to questionnaires an autistic trait?
Not in those words, as far as I know, but it makes sense that given how much more mental effort the same sort of tasks take for us, we might not be taking note of the same things.
True.
Thank you for this! I loathe the way these assessments are written! Truly maddening.
“Well, as much as I prefer not to, I can tolerate them if I have to.
For a little while.
I might feel horrible after and I might never go back to that place again. But I do what I have to do to survive, so let’s go with FALSE!”
I just recently took a DISC test and it really made me laugh, now that I understand my masking.
The specialist I saw has a son with autism. She’d ask the standard question and then give me nuance. Ie asked about socks, do you have issues. Immediate nope. Then she added nuance about texture, seams, sensation, etc. then I was like “oh I most certainly have issues because I need x things to be perfect in order to wear them”. She’s the only reason I got a diagnosis I’m sure.
It makes such a difference when someone understands how autistic minds work and can provide that kind of context! Glad you had that!
Exactly ✨️🙌✨️👌✨️🙌✨️
Standard questionnaires do not translate at all & are extremely difficult to comprehend & answer. (Often I'll end up with more questions about the questions to understand what is meant), or it's not that simple to answer, especially being later life & other various experiential factors!
Yes! Wth are people doing NOT consulting autistics on assessments about them? That's like writing a guide to dating based on conversations with cats.
Unfortunately, I think the DSM and all Western medicine is based on the white male. Have you read Devon Price PhD's Unmasking Autism? He talks about how your Autism is diagnosed/treated is related to your ethnicity, gender, and social class. It is disgusting and outdated. IMO the DSM needs to be completely redone, and the old volumes need to be burned. White males are only a fraction of the population!!