Let's create another term to describe us.

I have been participating in group meetings' on zoom.  We have been trying to develop a social engagement event for an autism social group for those aged over 18+ . however we have come across a difficulty in how we reach the target audience of who the events for. We really dislike the term 'high functioning' because how medical professionals have used and feel it does not fit as some of us have days when we copying and other days where we not copying so much.

We also do not want the social engagement to be taken over by careers of autistic individuals or those with intellectual disabilities. Because the main purpose of this social group is to combat the loneliness and to create a support network through creating friendships amongst those on the autism spectrum who are often forgotten about and expected to just assimilate.

What I am asking is how you would label or categorize autism that doesn't occurs with intellectual disability other than high functioning ? 

Please get a creative as you like.  

  • Not come across neuroexpansive but yes, it does sound interesting.  

  • At the moment I use neurodivergent, though do have some issues with it. Also use high support needs/lower/middling instead of high functioning as I find it slightly better and more accurate. Recently saw someone talk about the term neuroexpansive as a replacement, which I thought sounded interesting! 

  • It's difficult, as my own experiences have shown me.  But I would probably just continue to use the word "autistic" then use the group description to be more specific about the group's purpose. The more detailed explanation of the group's activities would also help to draw people in.  So it depends on how much space you've got.  

    If it is council-run with a development worker, then presumably other groups for carers and for those with learning disabilities can be promoted at the same time, to differentiate and signpost appropriately.   

    I don't think we need a new name.  We need to correct the assumption that autism and LD automatically go together.  

  • I don't want to knock down a wall, i want to create a doorways so that individuals with autism without intellectual disability have the accessibility to support and help on the other side of the wall without being gate kept from careers of the with autism with intellectual disabilities. to prevent how medical professionals use the term 'High functioning' to gatekeep, deny support and help as your not perceived as autistic enough.

    If we can create a new label that can not being constude by medical professionals to describe those on the spectrum without intellectual disability it will enable more infrastructure and accessibility to those of us on the spectrum without intellectual disability.

    One of the main issue a lot of basic infrastructure isn't accessible is the openness of the spectrum itself with people focusing on those with autism and intellectual disabilities often ignoring other areas of the spectrum including those with Pathological Demand Avoidance. 

  • I included neuro divergent as quite a few people with autism without intellectual disability often have ADHD and Dyslexia broadening it up and opening it up to people with ADHD might have a positive effect as studies have shown those with autism or ADHD without intellectual disability often forge ideal friendships ?  

  • So should we continue to use the words "Autistic without intellectual disability" to advertise to our demographic. because if we said just "Autistic" are demographic will not show up and assume it the social groups is for those with autism and intellectual disabilities. 

    Another fear that a few of the group members on the zoom meeting have mentioned that their scared that if we not exact with are wording it will open the group to careers of autistic individuals with intectral disabilities and those with autism with intellectual disabilities and will result in are intended demographic being discriminated again as not being autistic enough and pushed out of the social group which has previously happened.      

  • Ha ha!  

    I quite like clewnagrolaflengastablendawoznaranaranaratickrollingxwavelet (pronounced ‘cleet’ – the ‘wnagrolaflengastablendawoznaranaranaratickrollingxwavel’ is silent).  

    It’s Clingon for ‘what the ~&*$?’


  • An example of this is the term "Aspergers", which has had no traction in a clinical setting since 2013. 

    It's a 'lay' term used by people who are embarrassed at being autistic, or badly informed (in some cases, in the defence of people who use the word, it may be because they're self-diagnosed & have no Psychiatrist's report  with the correct terms; being self-diagnosed is fine, in my view, btw).  

    It was officially abandoned by clinicians 8+ years ago but that merely formalised a global consensus that had existed for some time. 

    Yet it's still widely used, even amongst charities. I find that mildly irritating (very mildly - I'm not that agitated by it).

    My diagnosis would once have been 'Aspergers' but nothing on earth would persuade me to use a term primarily designed to 'separate' me from fellow autistic people.  I'm autistic, & I'm fine with that.


    Asperger’s Syndrome (AS) was never a ‘lay’ term, only a diagnostic one which is currently being replaced as the International Classification of Diseases version 11 (ICD 11) comes into affect universally as of this year (2022), as began in America with the Diagnostic Statistical Manual version 5 in 2013, as still mentions Asperger’s Syndrome as follows from page 51 (in the Neurodevelopmental Disorders chapter starting on page 31):


    Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

    https://drive.google.com/file/d/10r_oUv_fZXQ4jUVXQC-4UnMdaneR3TD5/view


  • I quite like the Maori word for autism, 'Takiwatanga' (the second 'a' is long), a contraction of a phrase meaning "In their own time and space". Then again, I am somewhat obsessed by Maori culture.

  • How about "Rainmen"? ;c) 

    (It's my C.B. handle and seems to work well..)

  • This is a VERY difficult subject!!

    I do get the arguments over the use of Aspergers. At one stage its use was abandoned due to perceived links between the doctor and Nazi party. I believe this has since been disproved. Originally it was a case of by using his work, people assumed this then meant it was commissioned by them or that the discovery showed agreement with their ideology. It had been misused by the *** to differentiate those who struggled but could work, from those who were of no use to them.  Whilst it's use has seen a resurgence, it's difficult to use it as a general term, as it's proved incredibly divisive to so many people.

    The issue I have with high functioning is for the simple fact that if one end is high functioning the reverse is then low functioning. While quite possibly accurate, I do feel theres little need to ram the point home with such descriptions. It is a spectrum, there's a need to label different areas, but we can use other ways and means of doing that, surely?

    Neurodivergant is possibly to broad. On hearing the term neurodivergant, it could mean any area on the spectrum, potentially even a totally different mental health issue. It suggests, at least to me, it's just a different mental state. I.e. one that diverges from the "norm".

    Autism without intellectual disability. I think this disregards that intellect can be emotional intellect...

    Having said all this. There's not one suggestion I'd hang my hat on, but I equally don't have my own suggestion.

    Update as typing, given its a spectrum:

    Colours of the rainbow? Rainbow Smile  

  • I can see how it might cause difficulties in reaching your target audience, given the lack of clarity out there about what is and isn't autism.  But I'd just continue to use "autistic" because I think it's the automatic assumptions about co-occurring conditions that need to be challenged.   

  • Yes, I was attracted to that term.  Neurodivergence, of course, covers things other than autism, ADHA, dyslexia, torretts, dyspraxia.  But given that they overlap and co-occur so often...there's something of like thinking in us all.

    Term would appear to open this up to inclusion beyond autism but that might not be a bad thing.  Funny how many friends I've got who aren't autistic but have something other neurodivergent thing going on.  Like minds attracting???

  • it was probably best to stick with aspergers to seperate it from the worse functioning cases of autism as can be entirely different. but society is gone crazy so they cancelled the differentiation all because they got offended by the guy its named after. 

  • An example of this is the term "Aspergers", which has had no traction in a clinical setting since 2013. 

    It's a 'lay' term used by people who are embarrassed at being autistic, or badly informed (in some cases, in the defence of people who use the word, it may be because they're self-diagnosed & have no Psychiatrist's report  with the correct terms; being self-diagnosed is fine, in my view, btw).  

    It was officially abandoned by clinicians 8+ years ago but that merely formalised a global consensus that had existed for some time. 

    Yet it's still widely used, even amongst charities. I find that mildly irritating (very mildly - I'm not that agitated by it).

    My diagnosis would once have been 'Aspergers' but nothing on earth would persuade me to use a term primarily designed to 'separate' me from fellow autistic people.  I'm autistic, & I'm fine with that.

  • The difficulties inherent in this are unintentionally illustrated by your introduction, which contains assumptions which don't apply to me:

    I'm diagnosed as 'mild to moderate, not affecting cognition or language' ... but I don't 'copy' at all. Not only is copying not part of my profile, I'd actively avoid it. I mask, of course, but not by copying - my 'masked' profile is apparently assertively individual.

    Unlike a physical condition with strong visual indicators autism can appear to be much more nebulous and hard to pin down.  We're all very different.

    I understand your reasoning but getting the public to use different terminology, when most people who aren't directly connected to autism in some way would be uncertain about the existing terminology, is a major challenge. 

    Changes in the language over issues like race, and LGBTQi, took years, involved a bigger segment of the population, and had a higher profile.

    I'm with you in spirit but the important thing for me is to encourage a more informed public understanding of autism using the existing linguistic framework, with all its flaws. 

    Knocking the wall down and starting from scratch would be a distraction; attempts to change the language on topics like this can be emotive, contentious, and involve endless wrangling (illustrated by the other comments here). 

  • Neurodivergent sounds a bit like a young adult dystopian novel (which is in it's favour I think)