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?

Reply
  • 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?

Children
  • I understand your feelings over the term ASD. I really used it because it’s what most people are formally diagnosed with and because I couldn’t fit all possible terms that a person would use into the poll unfortunately. I thought about using ‘autism’, but I know that some individuals don’t like to use that term either. What I will do is edit the original post to explain why ‘ASD’ is used and make it clear that you can interpret it into your own favoured terms. I hope that will make it a bit less offensive to you  , Former Member and Former Member

    I’m not sure why we don’t have many relatives, friends etc. of autistic individuals on this forum. There are many possible reasons, but I think only they really know why they don’t come here.

  • Agreed, it's not a medical condition and I use autism. I've never use the term ASD and neither did the psychiatrist who diagnosed me and supported me for the first few months post diagnosis. 

    And I'm not even 'wired differently' or different in any way although I can see many people who are and for ease of conversation I call them nt's and I call myself autistic, just so I don't get confused or identified as one of those people who are wired differently, who I refer to as nt's.

    I think nt's have far more difficulties than me in the world and it is they that need help, not me. I needed help to understand myself and I'm getting help to help me build my life but if there was only so much help available in the world, I'd say give it to those nt's because they need it more than me.

    My only difficulties seem to come from fitting into the nt type set up that we have going on here in the U.K. (When I'm in Bali I don't have the same challenges because society there is set up more in favour of autistics) but that's ok, I know that it was set up this way because people like me weren't so prevelant in society but now we are and things are changing and more importantly I'm changing how I live my life and soon I won't need support and I'll have no difficulties in the world but I think maybe nt's will always struggle and need some help, but who knows, maybe as we work together more closely to understand each other, fewer and fewer people will need help and we can all live happily ever after. I'm definitely learning a lot from my support workers and they have ALL said that they're learning a lot from me and that I help them as much as they help me, I don't know how, but I believe them because I trust them. 

  • I don't like it, either.  I use ASC. I'm not 'disordered', but rather 'ordered differently'.  Having said that, my 'different order' does mean that I have difficulties (perhaps I should say challenges) that many don't have, so it would be perceived by them as a 'disorder'.  I suppose a lot of it is about perception and how that is conditioned into individuals.

  • 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.