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

Peter

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?

Parents

  • ‘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. 

  • in reply to Catlover

    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.

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  • in reply to Catlover

    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.

Children