Bring Back Aspie

The issue to my mind is services for aspies / high functioning autistic people look quite different to services for low functioning autistic people. It is useful to have a separate term because the services for each needs to be set up and run differently with an emphasis on different needs.

As it is the one size fits all terminology hides the fact that people with 'Aspergers' type autism are not being well served and having their needs met. It also makes the services that are set up for them harder to find.

Low functioning needs / issues: Issues with mental capacity and issues with independent living, accessing healthcare and welfare services.

High functioning autism needs issues: Issues with social isolation, discrimination (especially in the workplace / education). exclusion from education / labour market unrelated to ability.

Peter said:

Low functioning needs / issues: Issues with mental capacity and issues with independent living, accessing healthcare and welfare services.

High functioning autism needs issues: Issues with social isolation, discrimination (especially in the workplace / education). exclusion from education / labour market unrelated to ability.

 But I have "HFA" but my needs are also "low funtioning" needs. Where do I turn if those support services get split in half and people doing triage only read "HFA" on a decades out of date document? That's a problem, because I'm not the only one in that boat either.
Because if my reality isn't that I'm always or mostly "High functioning" then having "HFA" is just a meaningless wild stab in the dark made by some shrink with a clipboard and outdated notions of what autism is back when it was thought that it was caused by vaccines.
What would you propose to remedy that issue for those who would fall through the gaps?

Indeed but venue access is an issue. As I’ve said before the principal thing an autism charity could provide for autistic people who want to socialise around a special interest is the venue. A lot of public library space is not available after 5 o’clock after working hours. My local council charges a premium fee for evening access to their function rooms. And the fees are not that affordable for someone like me who currently does not have a job. Think you were looking at something like 40 £50 a night or something like that for a 10 person room. Which means something like charging a fiver each. It’s difficult to get people on board something new for those sorts of prices.

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.

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.

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.

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.

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.

🐝 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.

Thank you for replying here. It could be the case. I have similar relationship to my plants, although I can't keep adding new ones because I can't take care of +30 plants at once. When one of them turns yellow, I simply can't move on!. Maybe it's there and I couldn't see it yet, maybe it's not there for mysterious reasons. 

Sorry to but in, but I totally relate to what you're saying here. I wonder whether some strict routines and obsessions are even hidden from ourselves. I literally only realised the other day that I have and always have had, a book obsession. I am constantly thinking about them, reading them, buying them, organising them, would go insane if someone mistreated one of them or if I lost one etc. I treat them like they are my children! This is just normal for me, so I didn't see it. I have to park in the same spot at the supermarket an if I can't it's sheer panic. Again, this is just the norm for me so didn't see it. 

Yeah .. I can completely relate. I've never felt like I fit anywhere more than I fit here in this forum for example, but it still feels sometimes that I'm not quite "there". Specially when it comes to repetitiveness, strict obsession with a certain topic and rigid routine. I have those in what seems like "milder" version of what others here have. On the other hand, I struggle greatly in expressing myself verbally, I also struggle greatly in certain social events, hate the small talks and love the alone time and I have some strong sensory preferences as in smell, taste temperature, the necessity to manage my energy spoons, understanding things literally ext. some other things but I won't go for a long comment here. That leaves me wondering, do I even belong here?! Is it putting me in a box that doesn't fit me perfectly... It has been a topic of thinking for me recently. My life before this didn't feel much different either in terms of belonging and fitting somewhere. I will start a thread about it soon actually..

You just described a form of existential and logistical crisis I've been in most of my life lol. I'm never quite "X enough" my life has been a seemingly never ending series of falling through the cracks. Anyway I must go sleep pretty soon my brain feels like it is turning into a pumkin.

Well, the difference here is that I want one car that fits my needs and it's one that has some features of the mini and others of the sport. As in some areas I excel and in others I fail terribly (as talking for example). Added to this requirement, is that I, myself, am not sure exactly what my car specific requirements are and I require a specialist to guide me find my needs. I think this represents the case for many autistic people, we can't be put in a box and our needs are very different, person to person. I can't find all what I need in either the sport or the mini.. where should I go?! How do I define exactly my weaknesses and strengths and my specific needs without the help of a specialist who specialises in both of them? Why should I stick to one box or another while what I need is in between?!

I had actually thought of that before, and this is where overlaps may come back into it because we can't be the only ones with issues of isolation, and actually a lot of things that affect autists also affect people with ADHD, etc, hopefully You see where I am going with this and I won't need to make a full list. haha. So what if it wasn't only Autism specifc but opened it's doors to various kinds of neurodivergent folks? That would be okay by me, more people to get to know and hopefully find friends in. Anyway something for the next thread on it. Maybe we shuld copy paste a few points from this discussion to save us all typing things out quite so much if we need to refer back to this chat.

As I said I’d happily settle for a Portakabin on an industrial estate provided it had good transport links. But autism charities just do not see this sort of thing as a priority.

By all means let’s have a thread another time but I’ve already thought this through to some degree. An endeavour like this needs at least one full-time employee. Someone who can turn up with the keys to let people in and out of the building. If you can only do it when volunteers have spare time you won’t really be using the building enough to justify having a building.

also a thing about having a service like this is it’s geographically locked. it’s very difficult for people to be involved unless they are in geographic proximity and on this forum we are scattered all over the place. I for my part I am Yorkshire based. It will be difficult for me to collaborate on a project like this with anyone who wasn’t in the Yorkshire region. Simply because if activity is based around a physical place it’s difficult for people to be involved if they can’t easily get to that physical place.

Yeah, unfortunately it is. The SU is one of the biggest unions in the country, it's made up of smaller unions for most universities and colleges. Apparently it has over 7 million members. Plus most of the venues are owned by the universities and colleges, not the NUS, they have agreements in place to use them but they don't own them for the most part. Even if all the autistic people in the country joined we'd be smaller than that by a factor of 10, and realistically the number of people joining would be much smaller than that. Anything set up now would take years to get to the stage they're at, if it ever got that big.

Perhaps at a more social hour one of us should make another thread and see who on this forum would be A interested and B capable of making a start up for something like this for autistic adults and then see if anyone from NAS would be interested in helping with some logistics to create the service.
I mean we are in their forums, why not take the idea to one of their higher-ups?

Again I’m going to point out student unions do exactly that. They have venues all around the country, which they make available to students to organise their own events in, either for free or at highly subsidised prices. Lots of charities own or lease their own building. and average student union is a massive sprawling complex of rooms and Cafes and restaurants and nightclubs. Is it really so unrealistic  that an autistic  charity could afford a Portakabin.

Charities have to hire venues too, or were you suggesting they would have multiple locations around the country purely to host events? That would take a massive amount of funding, which this just doesn't warrant.

Perhaps I wasn't very clear, I wasn't talking about having the events online, just the organising and the social aspects in-between meet ups. Frankly it sounds like you want a charity to organise lots of different clubs, I would say that is something that people sharing similar interests should organise themselves, just like anyone else with shared interests. If there isn't already a club for what you are interested in then set one up and advertise it on here and on the various Facebook groups, see what happens.

What we need is something like a student union but for autistic people. An umbrella organisation for our activities and interests and also an advocacy and advice service for us when we are discriminated against.

well You are at it something like a careers advice service specific to autistic people would not go amiss either. Because frankly I don’t think the average autistic employment charity it’s going to do a very good job of helping me tailor my CV to getting a postdoctoral research position

Indeed but venue access is an issue. As I’ve said before the principal thing an autism charity could provide for autistic people who want to socialise around a special interest is the venue. A lot of public library space is not available after 5 o’clock after working hours. My local council charges a premium fee for evening access to their function rooms. And the fees are not that affordable for someone like me who currently does not have a job. Think you were looking at something like 40 £50 a night or something like that for a 10 person room. Which means something like charging a fiver each. It’s difficult to get people on board something new for those sorts of prices.

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.

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.

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.