Bring Back Aspie

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!?

But it's a false equivalence, I'm not a car, I wasn't artificially designed to perform in a single predetermined niche, I have to be able to do lots of different things to at least some degree in order to navigate this world and the society we live in that's the issue I have with variable functioning.
I wish I was expected to do just the one or few things I do well and then nothing else like a car, it would make my life much easier but that is not the case of what my life is like.

I'm going to jump in on this, because autism is a spectrum as another poster says, it's not two points on opposite ends of a line like you want your example to show. As people have said, sometimes you have higher support needs than others, and some people can be high functioning in terms of IQ but low functioning in terms of sensory processing. And vice versa. A service that provides all support to all autistic people covers every possible eventuality in one service, in one place, with minimal numbers of different people.

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.

Sometimes something can be something to all people, not just certain people if that makes sense.

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

But why would you split the service if a specialist to cover every area needed is already in the same building?

Again ... apply the car metaphor? So why aren't sports cars, usually, designed and manufactured by the same people as people carriers? Its the same principle. Different priorities, different engineering, different ethos and to some degree different customers even though, yes, some people want both a sports car and a people carrier. It's the same with autism services. To avoid compromising the quality of one thing for another separation is useful. Otherwise you end up selling 6 seater sports cars and people carriers with low suspension and no head room. Sooner or later one (or both) visions of what the service should be will lose out and end up compromised.

But why would you split the service if a specialist to cover every area needed is already in the same building?

Peter said:

Actually space is one of the things it really does make sense to share. Lots of charities have agreements to share buildings. But when they start sharing staff and money sometimes the mission of one can be compromised for the other.

But that's what I'm saying many of us would need the same staff anyway, also one cannot be more or less deserving of funding we all need the services the areas needed most would already be managed by the organisation It doesn't need to be artbritrality split into services for people with high or low IQ if most of us will needa lot of the same help anyway. I don't see why my funtioning needs support in one area should be compromissed just because I'm also getting support in the other areas I function to a different degree.

Peter said:

It's not about being ashamed of this or that person.

 I understand we all type things out in a clunky way or accidentally omit vital details sometimes and aren't always as eloquent as we'd like, but it would certainly help with these fractious topics if you could maybe lead with that next time. Because I have 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.

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

Peter I and others like me literally are the overlap, also complexity in autistic experience isn't the exception it is the "rule".

I'm not debating that. Look it's ok to own 2 cars, a fuel efficient mini car you drive to work and a sports car you drive at the weekend. Would the world be a better place if all sports car manufactures had to make mini city cars and vica versa? Allowing a service to specialise can mean better service. Trying to cover all the bases in one company / charity can lead to a one size fits all approach.

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

Well you know what if someone less functioning than me who needs care full time sits next to me I'm not ashamed to share my space with them.

Actually space is one of the things it really does make sense to share. Lots of charities have agreements to share buildings. But when they start sharing staff and money sometimes the mission of one can be compromised for the other. That is my point. It's not about being ashamed of this or that person.

Peter said:

Actually no. It isn't always more desirable to run two quite different services together just because the people being served share some things in common. For starters if service A and B don't have much overlap

Peter I and others like me literally are the overlap, also complexity in autistic experience isn't the exception it is the "rule".

Peter said:

 services for low functioning autistic people tend to see their carers as customers (in the same way that schools actually treat parents like customers not children). Services for high functioning autistic people it really has to be the autistic person themselves that is the customer.

But I have a support person even as a "HFA", are you putting me on the same level as a child who needs an adult to make decisions for me just because I need the support of a friendly face in the room? Really?
Sorry but I get the impression that those of you who deem yourself to struggle less and be on some higher rung just don't want to have to sit with us "other" autitic people in the same waiting rooms for no discernable good reason. Well you know what if someone less functioning than me who needs care full time sits next to me I'm not ashamed to share my space with them.
Sorry Peter I've always tried to give you the benefit of the doubt as you seem genuine and intelligent but I don't think you realise the full repercussions of what you said and it's implications and why they are offensive. I realise you may have had 0 intention of doing so but that is the effect it has regardless.

Actually no. It isn't always more desirable to run two quite different services together just because the people being served share some things in common. For starters if service A and B don't have much overlap the 2 services are always going to be in competition and as people 'move up' through the ranks if some one who used to work in service A takes over the top job they will naturally want to increase service A's budget ... which leads to service B having its budget cut.

Also services for low functioning autistic people tend to see their carers as customers (in the same way that schools actually treat parents like customers not children). Services for high functioning autistic people it really has to be the autistic person themselves that is the customer. Its really difficult psychologically for any business or charity to think about serving two different sets of customers who's preferences are often at odds.