Aspergers was actually quite a useful term, we should replace it.

So I've changed my mind, or at least reconsidered it, that doesn't happen very often.

Let me give you an example. In my area there was a social group for adults with Aspergers. I say was because after repeated attempts to contact them I can't get a response. They seemed to go inactive over the pandemic but briefly went active over the last year only to go dark again after I noticed. Here's the thing. I only found them by searching 'aspergers <name of area>' in google. And why did I do that? Well because if you search 'autism <name of area>' you are inundated by services for children or adults with sevear learning disabilities. I'm afraid the retirement of this term Aspergers may lead to the erasure of high functioning autism as a focus of intervention. Charities, councils and community projects will say 'what do you mean there is nothing suitable for autistic people here we have tons of activities / outreach for autistic people,' when what they really mean is they have things aimed at low functioning autistic people.

There needs to be a word for high functioning autism. Something that we can take to councils and charities etc and say 'yes but you'r not doing anything about this.' And unfortunately it can't be aspergers. Partly because there are just too many people with a paranoid fear of offending people by using what some call a politically incorrect term. But more because if you say aspergers people are so trained now to think aspergers = autistic that an bureaucratic official will respond by telling you 'oh aspergers is part of our autism work, people with aspergers are free to use these services,' missing the point that these services have not really been designed in a way thats suitable for them.

We need a new term that references it self as being different to standard autism. Something with autism in the name but with something extra added to indicate that you can't equate it with all autism. That it in some way stands apart a needing special treatment. I agree in principle that there is no hard and fast line between low and high functioning autism but in terms of the kinds of services that are needed there is a clear distinction which requires a clear distinction in terminology.

TLDR: we need a quick and easy term to use to point out charities and local authorities are completely failing to address the needs of high functioning autistic adults. Any ideas?

  • I get that society seems to be moving towards a more inclusive labelling approach for issues of the mind, but I completely agree that any group should be able to self label if they want to.

    If you look at hte LGBT-etc group with whichever addition has been added to the acronym, this is a great example of how many groups of non conformist sexual orientations have formed a larger collective while maintaining the individual lables of their own orientation.

    If we, as a group under the larger Autistic collective, can identify as something then we can own that label.

    Aspergers may have an unpopular origin, but should we lay claim to that as our label of preference then that is our right. Some names that were socially unacceptable have been claimed by other groups (African Americans claiming the N word for example, or some of the acromyms from the LGBT-etc group).

    It is only a label, it has fairly widespread association with what we are so I would be happy to use that for our banner.

  • I have read the conversations with interest. I think I would put myself somewhere in the middle. I find writing more difficult than Maths as sometimes I can't think of how to say something. I take longer than some people to work things out when reading or listening, but I can read fluently. My work is in administration. However when people explain long complicated things I get lost. So I would not define myself as high functioning.

    I understand what you are saying about finding people to whom you can relate. Some NTs don't understand the every day things I find hard. However I guess if I was NT there would also be some NTs I couldn't relate to.

    Sorry if that sounds a bit complicated. I guess what I am saying is it is hard to define exactly the type of person you can relate to. To me it would be someone who either thinks like me or understands how I function. The people I find it easiest to talk to either have similar interests or think in a similar way to me. 

  • I settled on using type zero in my article. On the basis that the world health organisation ICD-11 subclass for autism with no defect of intelligence or speech is numbered 0.

  • You could have type 1 and type 2

  • We may all be autistic but the challenges high functioning autistic people face are hugely different to the ones low functioning people face even though we are both autistic.

  • I mean no disrespect but I find it really hard to find common ground with people who stare blankly at me when ever I say anything. Even when I respond to their lead.

    for example if a low functioning autistic person says they’re  interested in photography and you mention some interesting photographic technique you read about or some famous photograph and they look at you like you’re talking a foreign language.

    because what they really like is the idea of taking photographs not the study of photography and the complexity of what you’ve just told them is confusing. … well it’s a bit like having a conversation with a child.

    actually it’s worse because most children are like sponges for information and are quite curious about complicated things.

    by and large the people I’ve met at events for autistic people are so overwhelmed by the concept that the thing they like could have these complicated layers to unwrap that they get flustered  and change the subject. For the most part they’re not even capable of having a conversation about their own special interests at a level that would engage me.

    The social needs of high functioning autistic people are different. Really different.

    the employment needs too. The average employment assistance scheme for autistic people is preparing them to stack shelves in a supermarket or something like that. A supermarket wouldn’t have me. They’d consider me overqualified and assume I’d leave as soon as possible, which I would. Those qualifications  don’t  mean I don’t experience challenges getting employment though. I assure you I do. But the aproch to helping me would probably have to be very different.

  • I think sometimes it's not pretending.  its because we have masked for so long. It's a hard habit to break.

  • ‘People’ thought that Asperger’s or HFA was a different thing, because there often wasn’t a language delay. Times have moved in, and we know that it doesn’t matter whether you talk early or late, are verbal or non verbal, because at the end of the day, we all have a diagnosis, and need support at some time or other in our life. 
    I see no distinction. Any groups I’ve searched, I’ve used the correct and current word ‘autism’, and the groups that pop up are full of different people. Some attend in their own, some with support. Some talk, some choose not to. Some drive. Others can’t. Either way, they all mingle in their own way. I prefer that in an group. I don’t just want all women like me, but where over half of them still pretend to be NT on the surface….I can’t be doing that in a group setting. 

  • Replace with what?

  • you could have ASCO but that's a bit like ascot or tesco

  • Or we could go to the root of the word “Autism” comes from the Greek autos, meaning “self” while ismos refers to an action or state of being. Maybe replace the Aut in auto? 

  • Hmm google translate seems to think autism in Spanish is autismo though. But that’s not surprising there is a distinction between autism and autistic. Anyway we’d write it autism0 with a number 0 and pronounce it autism-Oh. It would be clear we’re not talking about a Spanish word. And the reference to the ICD-11 lends it medical credibility. We’re not just making stuff up.

  • Autistico(a), is Spanish for autistic, as in "Soy autistico(a)" - "I am autistic".

  • In fact my acronym could be read either way so it doesn't even work haha. 

  • You know the who has numerical codes for autism. In particular it has 6A02.0 "Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language." Maybe we could do something with that? Autism.0, AutismZ for zero maybe?

    I think autismo is Spanish for autism so you could say autism0 with the number 0 to differentiate it but pronounce it autismo.

  • I'm not aware of any umbrella neurodivergent groups outside of universities / student unions. And again taking it to a council or charity and saying 'what are you doing for neurodivergent people' they'd say 'what kind of neurodivergent,' or 'tons of stuff' then point you to their low functioning autism resources.

    to be honest we need the exact opposite of neurodivergent. we need to go narrower not wider. to emphasise that the needs are different.

  • It's a nice idea although there is already a feminist organisation called that.

  • I think groups more for generic "neurodivergence" would be helpful as lots of aspects cross over. I find I get on quite well with ADHDers. The groups I've seen in my area are for adults who I have absolutely nothing in common with or are befriending groups. 

    Have you looked on meetup? 

    I think some of your punchier names would still need work but it's a start!

  • I mean really we need a word not group of words. Don't underestimate the power of a word, a simple one stop label. I don't like that the world works this way but if you want to get recognition and establish a clear image in peoples minds you need a word people can hang an idea on. McDonald's, Wendy's. Why do you think KFC is KFC and not kenticky fried chicken? Or why is B&Q B&Q and not Block & Quayle? We need a word.

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