Bring Back Aspie

Maybe this should be it's own thread, however....
... Do you recall after school clubs? It's occured to me that what you are reffering to isn't really a support service (in the traditional sense of the phrase) for "HFA" folks, what you are refferring to is the need for a social club run by and or for Autistic adults, so that perhaps is a thing that could be run out of community centres and public libraries if groups could be formed and ruun it by bringing their own equipment. You know a lot of community projects are grassroots until they get charity staus and/or  get picked up by other agencies wanting to be involved or provide funding.
Yeah ideally we wouldn't be the ones to have to run and fund it ourselves, but in light of no alternative have you thought about seeing wh would be willing to let you set one up yourself in the meantime?

Oh but it would, because the principal problem is most of these things do not work as online events believe me I have tried. And the principle thing thaT a charity would bring to this sort of endeavour would be the physical venue. That and a network of contacts, email addresses, PR materials, newsletters.

Well, great point here.

Could that not be something these sort of discussions could be used for? Having different chat threads for different special interests where meet ups could be organised? Maybe a Discord server with different rooms, there's bound to be someone who could set that up. I don't think a charity to organise social gatherings would be that different from doing it ourselves.

Sadly I don’t see NHS mental health services giving us a room to watch anime in. Or to play video games in for that matter. Or a cat walk to run a Goth /cosplay fashion show on. Or a series of empty corridors to turn into an obstacle course for a Nerf / water balloon battle. Or a restaurant in which to run a maid café for a day.

...and I'll stick with the term 'Ben'.

I think most of the ASD labels are widely misunderstood.

Peter said:

I’m not making any assumptions about what you can or can’t do. Well certainly not things like driving. But I do not see why because you require services that pertain to requiring care and Assistance with daily living people like me cannot have terminology that indicates we still have needs, for example social needs, even though we do not struggle with those sorts of things.

But I'm not stopping you from using terms you prefer to refer to yourself, I'm not the label police, I'm just explaining my it is separatism and not the best practice.

Peter said:

I tried to say in a post but seems to have been deleted or lost.

I wondered what that was, I went to check a reply notification but as I loaded into the page it said whatever it was was unavailable and under review. Spam filter must have eaten it, don't worry it got 2 of my posts earlier too.

Peter said:

The services I would wish for do not exist. because the services I would wish for are mostly specific to autistic people for whom the most natural forum for socialisation is their own special interests.

Well I want that service too, (for fun maybe make a list of your iterests and I'll tell you what workshops you'd meet me in where we share an interest) I just don't see why they need to be held "somewhere else" or with different people. In fact if the NHS was better funded overall we probably would have it as a sideline of Mental Health services anyway. So it's not missing because "HFA/aspergers" have fallen out of use it's because of the lack of funding.

Ooooh. Tough one.

The term 'Aspie' sounds kind of pleasing until you look into what Herr Aperger was actually guilty of. Errr....not so cute sounding now! EEEK

As for the groupings, I don't see myself as any different to others with substantial needs in living support.

I may be fortunate in having a degree, a home, a job and all that, but put me in a medical situation and I am as so-called 'low functioning' as those of my autistic siblings without oral language or with other needs requiring significant support.

Trouble is no one in the professions get that because I look so otherwise competent, educated and articulate.

I don't see myself as any more or less autistic than anyone else. It's just that the impacts are different for each of us.

I think I'll stick with the Term 'Autie'.

And the reason the services I would wish for do not exist is in part because there is no terminology to describe autistic people ffor whom the greatest needs relate to communication and social isolation. Asperger’s was the closest thing to a term for that we had.

The lack of Asperger’s specific charities is why issues like social isolation of people who would wish to engage on the lines of their special interests can be written off as a niche issue.

I’m not making any assumptions about what you can or can’t do. Well certainly not things like driving. But I do not see why because you require services that pertain to requiring care and Assistance with daily living people like me cannot have terminology that indicates we still have needs, for example social needs, even though we do not struggle with those sorts of things.

as I tried to say in a post but seems to have been deleted or lost. The services I would wish for do not exist. because the services I would wish for are mostly specific to autistic people for whom the most natural forum for socialisation is their own special interests. And providing social interaction for autistic people that revolves around special interests is considered a niche case by most autistic charities.

Peter said:

I don’t think there’s anything elitist about saying that you are intelligent and able to go to the shops or drive a car

Not there's not, and I can do those too , just not for very long periods of time, but that's just because I'm lucky enough not to need support for those things specifically. I look high functioning on the surface level but in reality it's a neverending cycle of maintenance that requires a carer in other areas of my life.  Yeah I'm not the worst functioning autist and my ability to use my thesaurus brain here on the forums might make me look competent but the label based artirarily on my IQ fails me, because if it weren't for the people I have in my life that I do, I wouldn't function even half so well as I do now, and I don't consider myself to function highly at all, that implies I can live alone, which I can't. But "back in the day" my original diagnosis seems to have been the same as yours.
If we look very similar "on paper" at least why would you not want to be in the same category as me? Did you think that I couldn't drive or go to the shops just because I also need a carer or someone with me for support sometimes? That's why it is elitist. It's all the presumtions based on these false functioning labels, they are really harmful becase there is no spectrum under "HFA/Aspergers" to account for the areas where I need the extra support. But if people would just accpet that Autism is a spectrum and it isn't fixed then we are all included and thought of.

Because the services I need don’t exist. And one of the reasons they don’t exist it’s because the charities that might provide them have no interest in fulfilling what they consider to be a neich special case. Because that’s what being a high functioning autistic adult is to them, a niche case.

I believe I’ve spoken elsewhere about how there ought to be organisations to help autistic adults with social isolation, high functioning autistic adults. The Kind of people who will not find going to the shops to be a particularly novel social event. The kind of autistic adult who has some sort of special interest around which their social lives would naturally revolve.

I believe I’ve spoken before about how ideally for autistic adults it would be good if it was some sort of adult version of a student union. an umbrella organisation to provide venues and pr and networking for autistic people to form special interest groups. There is no service I am aware of that is dedicated to facilitating autistic people meeting regularly around their special interests. 
and the reason is to a charity that is primarily concerned with autistic people who are struggling with daily living and getting out to access basic activities on their own The idea of facilitating some sort of social activity based around elaborate special interests is considered niche.

Asperger’s is the closest thing we have to recognised term to describe the type of autistic person whose social life would normally revolve around a special interest and for whom one of the main challenges in life is social inclusion. And the lack of a specific term for this type of autistic person is partly responsible for the lack of services aimed at this specific need.

The problem with your metaphor is scale, BMW might have different offices for different things, but that's because they shipped 2.4 m cars last year alone. They can afford to have different specialisms and with that large scale there's the need for different specialisms.

An autism service in the UK is serving 700,000 of us, and a good proportion of those won't need to access a support service, so really there isn't the call for multiple different services. The moment a service starts getting more and more specific, the smaller and smaller the target demographic becomes, and therefore the funding becomes smaller as well to the point where it isn't cost effective to run. Keeping it broader allows for more services to be offered to more people because the service providers can support people with different needs. A speech and language specialist can help someone with low level language skills just the same as someone who needs help understanding social language. You don't need two language therapists in two different services.

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

ave encountered "Aspie" supremacists (sorry to the user here with that username) who fancy themselves as some kind of Sheldon Cooper, and talk of splitting us autists back up into old labels is usually their opener and can quickly lead down that path of encouraging internalised ableism within the community.

I’m not sure what you mean when you say ableism. If you mean acknowledging that some things are intrinsically hard for people then actually I think that’s a good and necessary thing. It’s far more dangerous when it’s not articulated. Let me give you an example. I’m told that people with learning disabilities who expressed a desire to have sex used to be quite often told by staff in their facilities but this was something they would have to wait for marriage for. Completely failing to mention and sidestepping the fact that in their eyes marriage was an impossibility and indeed something that they were not mentally fit to consent to. At least if people are being told that something is hard or forbidden they can in defiance attempt to do it anyway. It’s when we pretend that everything is possible and straightforward but then act in such a way as if it was impossible that people find their options in life most severely limited.

as for Sheldon Cooper I’ve often been compared to Sheldon Cooper and I assure you it’s not typically used in a flattering sense. to me the most unrealistic thing about an autistic man in his position is it he would have so many friends and such success. when success in academia has as much to do with academic politics as talent and when in my experience even Neurotypical is within academia can often be quite isolated.

I don’t think there’s anything elitist about saying that you are intelligent and able to go to the shops or drive a car (which ironically Sheldon Cooper can’t) but have a dysfunctional social life and struggle getting by with other people The workplace. If there is I guess you’ll just have to consider me Eliteist.

Peter I get maybe you prefer it that way but I'm AuDHD, with sensory issues, OCD, and situational agoraphobic expressing GAD, the last thing I need is to have to make multiple trips and see different people when I could just have back to back appointments with the same person and minimise travel to and from. And from Debbies thread about the hell of DR appointments a few weeks ago I'm not unique in needing that. If services are merged and you think you can cope better than someone like me why can't you just book separate appointments with who you feel you need more specifically as and when you need them? Why would you need to demand services be split when those that need it to be joined more (presumably those of us you consider less functioning and will cope less than you) will be put out?

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

But it's a false equivalence, I'm not a car, I wasn't artificially designed to perform in a single predetermined niche

But in my analogy you are not the car, the services you use are the car. It’s totally possible for you to use multiple services just as it is possible for a person to drive multiple cars.

it is totally possible for you to benefit from using one type of service on Monday, just as you might prefer to drive to work in one type of car, and then on Saturday to use a different type of service just as you might drive a different type of car at the weekend. I am not suggesting that we can pigeonhole every autistic person into one of several predefined need categories. I am suggesting in so far as we already have distinct need categories it is in some ways better for those to be met by different services which describe themselves using different terminologies.

BeckyThump said:

it's not two points on opposite ends of a line like you want your example to show.

I don’t believe my example does suggest that. Where does a compact SUV  fall  between sports car and people carrier? it’s it’s separate own kind of thing.

BeckyThump said:

Also your car metaphor doesn't work fully, there are plenty of manufacturers that produce performance cars and people carriers. Mercedes off the top of my head, and BMW.

I think you’re actually making my point for me. BMW actually has several separate design studios that work separately on different ranges of cars. I would presume precisely because it’s very helpful to have separate studios when you’re trying to work towards separate ethos’s  in each case. If you have a charity large enough and well funded enough to run separate independent teams for different services then maybe that isn’t as big in issue. That said when the lean times come one of those services is liable to get cut in favour of the others just as one of several studios sometimes gets shut down and particular car ranges dropped in order that money can be pumped elsewhere. Nas has done this itself. There used to be a general-purpose telephone helpline. It got dropped because it wasn’t considered as important as providing a more specific phone service aimed at children. If NAS was split into an adult focused and a separate children focused charity that would not have happened.

JT said:

I feel a sense of fear in other people's reaction when I say I'm autistic that doesn't seem to come if I say I am Asperger's

Unfortunately I think this is a form of abelism where they assume based on old stereotypes when we were split into different categories and the media portrayed us badly often potentially violent that this is what we are like if we are autistic. In short I don't think they really know what autism is.

JT said:

Why, for example, can I not be weird with people who are NT because they are different to me?

To me, I'm entirely typical!

TBH I have started to stop masking when I don't absolutely have to and using what AFTI calls the Foreigner Strategy ( https://www.youtube.com/watch?v=k6dCZS1dpaE ) I think personally by embracing the umbrella of autism and just living our very different lives under it we will gradually change people's perceptions about what autists are like, that we aren't all like Christopher from The Curious Incident of the Dog in the Night-Time or Rain Man. That's my goal anyway to acheice acceptance through sheer existence as an autist. I love "to me I'm entirely typical" because that's how I feel too, "what do you mean I'm different? I've always been me." :D

Why, for example, can I not be weird with people who are NT because they are different to me?

To me, I'm entirely typical!

For me this is an important point well made.

The reason I posed the question is because I've noticed that within myself, I feel a sense of fear in other people's reaction when I say I'm autistic that doesn't seem to come if I say I am Asperger's

Not sure why there is a difference but I think ignorance plays a very large part. I'm just not willing to be treated differently even though I am to many, I'm also not that different to all of you, so why should I have to deal with this weirdness!?