Who is here?

Just for a bit of fun, I thought I would do a poll on the demographic of individuals who use this forum and then we can see what our online community looks like and argue over the diversity of it (okay, so that last bit might be a joke!). 

Please note: within this poll I have used the term ‘ASD’. I did so because this is what people are usually formally diagnosed with and because it would fit into the poll. If I could have used all alternative terms that people identify with then I would have but unfortunately there just isn’t room within the poll options. To avoid offence however, please substitute ‘ASD’ for whichever term you most identify with in your head and if you want to clarify which term this is, then please do so below.

Parents
  • Voted as the 'A person with diagnosed ASD', although I'm not at all happy with the term 'ASD' as it implies some kind of medical condition where people who understand jargon have privileged expertise, which appears to me to be false. Yes I know some people hang on every word of the diagnostic systems, but even the psychiatrist who 'diagnosed' me was very willing to use 'ASC' and NICE seems to be switching to 'autism'.

    The results are consistent with the idea that parents, relatives and partners of autistic people don't hang around these forums to chat. Maybe they're too busy? It's mainly autistic people responding to parents' queries. Is it paranoid to wonder if we put them off and they prefer a forum where they can talk about themselves rather than the autistic person?

  • as it implies some kind of medical condition

    I do not think that it is not a medical condition broadly defined. Even if it is a personality / neurological difference, it stems from biology. And as most people with ASD have difficulties in areas such as social communication and sensory processing, which require support. Doesn't the combination of stemming from biology and requiring additional support because of difficulties fall into the category of medicine?

    where people who understand jargon have privileged expertise

    I don't think the term ASD implies this...it's not a difficult word to encounter if you have any autism-related conditions, concerns, or interests.

    but even the psychiatrist who 'diagnosed' me was very willing to use 'ASC' and NICE seems to be switching to 'autism'

    I don't really care at all about the small differences in wording, as they really just imply the same thing. We don't call ADHD (attention deficit hyperactivity disorder) ADHC (Attention deficit hyperactivity condition). So I can't understand why people care so much about differences in wording? 

    In The Curious Incident of the Dog in the Night-Time, there's this well-stated passage I greatly agree with: 'All the other children at my school are stupid. Except I'm not meant to call them stupid, even though this is what they are. I'm meant to say that they have learning difficulties or that they have special needs. But this is stupid because .... But Siobhan said we have to use those words because people used to call children like the children at school spaz and crip and mong, which were nasty words. But that is stupid too because sometimes the children from the school down the road see us in the street when we're getting off the bus and they shout, "Special Needs! Special Needs!" ....” The full passage can be found here: https://www.goodreads.com/quotes/356553-all-the-other-children-at-my-school-are-stupid-except Changing the wording from nasty words to 'special needs' can still turn 'special needs' into an insult as people are referring to the same thing. 

    I'm not trying to hang on to every word of the diagnostic systems, I just don't care why which word is used, but sometimes do find it a bit frustrating that people keep changing it, and in more extreme cases get offended if someone used a term they don't prefer (e.g., autistic vs having autism). I know in English there are subtle differences, but  mentally I think people usually just mean the same thing regardless of which words they choose.

Reply
  • as it implies some kind of medical condition

    I do not think that it is not a medical condition broadly defined. Even if it is a personality / neurological difference, it stems from biology. And as most people with ASD have difficulties in areas such as social communication and sensory processing, which require support. Doesn't the combination of stemming from biology and requiring additional support because of difficulties fall into the category of medicine?

    where people who understand jargon have privileged expertise

    I don't think the term ASD implies this...it's not a difficult word to encounter if you have any autism-related conditions, concerns, or interests.

    but even the psychiatrist who 'diagnosed' me was very willing to use 'ASC' and NICE seems to be switching to 'autism'

    I don't really care at all about the small differences in wording, as they really just imply the same thing. We don't call ADHD (attention deficit hyperactivity disorder) ADHC (Attention deficit hyperactivity condition). So I can't understand why people care so much about differences in wording? 

    In The Curious Incident of the Dog in the Night-Time, there's this well-stated passage I greatly agree with: 'All the other children at my school are stupid. Except I'm not meant to call them stupid, even though this is what they are. I'm meant to say that they have learning difficulties or that they have special needs. But this is stupid because .... But Siobhan said we have to use those words because people used to call children like the children at school spaz and crip and mong, which were nasty words. But that is stupid too because sometimes the children from the school down the road see us in the street when we're getting off the bus and they shout, "Special Needs! Special Needs!" ....” The full passage can be found here: https://www.goodreads.com/quotes/356553-all-the-other-children-at-my-school-are-stupid-except Changing the wording from nasty words to 'special needs' can still turn 'special needs' into an insult as people are referring to the same thing. 

    I'm not trying to hang on to every word of the diagnostic systems, I just don't care why which word is used, but sometimes do find it a bit frustrating that people keep changing it, and in more extreme cases get offended if someone used a term they don't prefer (e.g., autistic vs having autism). I know in English there are subtle differences, but  mentally I think people usually just mean the same thing regardless of which words they choose.

Children
  • Well, left-handedness doesn't require additional support to function in life

    It's fairly minimal, but it might include left-handed tin openers or guitars. Back a hundred years ago, it was punished at school and people forced to write with their right hand. There's also an analogy with homosexuality being listed as a disorder in previous versions of DSM.

    But why do people have no trouble with ADHD and not wanting to change it to ADHC? 

    I don't know. I'm not formally diagnosed ADHD. Maybe with autism there's a stronger sense of needing deeper understanding and having the autistic community in control of their lives.

    You said earlier that people who understand jargon have privileged expertise.

    Not quite. I meant there was usually a perception if you hear a TLA that it is a specialist term with lots of associated knowledge. I've met social workers who didn't know what ASD means.

    My main point was actually that we hadn't had a response from parents/carers.

  • Well, it depends how broadly. Is left-handedness a medical condition? Is it a 'disorder'?

    Well, left-handedness doesn't require additional support to function in life, and the percentage of left-handedness is high, so I wouldn't call it a disorder. 

    Perhaps 'disorder' itself had a more negative tone associated with it then other words, and I do agree 'condition' has a more positive and encouraging tone (to e.g., focus on strengths).

    I do agree with Marian Tom's point of view that a lot is about perception (e.g., having difficulties others don't have may be perceived as a disorder).

    But why do people have no trouble with ADHD and not wanting to change it to ADHC? 

    But if you don't, and aren't using it in your own way, it's jargon. Even if you unpack it to 'autism spectrum disorder' it is meaningless to most people, and would have been to me three years ago.

    You said earlier that people who understand jargon have privileged expertise. But then this is not true for just ASD. If people have not heard of ASD, then they probably would not have heard of ASC or autism, and vice versa. Usually if you have heard of one of the three you would understand the rest.

    To me they are just slight wording variations of the same word. Like among vs. amongst; or American flavor vs. British flavour.

  • I do not think that it is not a medical condition broadly defined.

    Well, it depends how broadly. Is left-handedness a medical condition? Is it a 'disorder'?

    I don't think the term ASD implies this...it's not a difficult word to encounter if you have any autism-related conditions, concerns, or interests.

    But if you don't, and aren't using it in your own way, it's jargon. Even if you unpack it to 'autism spectrum disorder' it is meaningless to most people, and would have been to me three years ago. It sounds like it must be describing something quite precise and understood, leaving the listener at a disadvantage. I just cited http://journals.sagepub.com/doi/abs/10.1177/1362361315588200 in another thread.

    Yes, reality is more important than perception of words, and I take the point about discrimination from Curious Incident. 'Condition' was a euphemism for 'disorder' which was a euphemism for 'illness'. There's some phrase for that kind of euphemism treadmill (edit: OK it's 'euphemism treadmill'). However, I wasn't making a point about discrimination or fear. I've met both professionals and autistic people far more concerned with terminology than me, and one reason I take a side in that is that I think the autistic people still understand autism better than the professionals. I'd have been happier with 'person with a diagnosis of ASD' even though my diagnosis was of ASC, specifically AS. I suppose that might make the other options on the poll a bit less clear... I'd note this organisation has 'autistic' in its name, not ASD.