ASD village

[edith simon]

I would like to know your opinions.

If there was a chance would you like to live in a village or farm or area where all the people would be on the ASD spectrum.

The village/farm/ should be self supportive /so everybody would work something according their capabilities and educations/ if they can/ .I have in my mind like kibuczes in Israel or Emmaus in uk.

In Hungary there is something like that unfortunately only till age 21.

In France I also saw self supporting small groups 120-150 people for ex alcoholics and ex drog adicts.

there are all sorts of industries and jobs in these places as they run,manage their own places and produce their own foods , and not to get bored and being multisided they change the jobs /what is changeable/ on a weekly,monthly basis.

obviously married couples live together and others live in sigle or two bedroom rooms.

waiting for your responses.

all the best,

Edith Simon

[cmuir]

Hi

 

I can see why those type of communities could be appealing – in the outside world people on the spectrum are expected to conform and fit in (and not necessarily be themselves). Also, neurotypical people, particularly those who know little or nothing about ASDs, can be incredibly judgemental. Certainly my ex-neighbours made my life a misery, showing no understanding or compassion for my son. We moved house. My overall opinion is that living in a community like the one you're suggesting isn't necessarily a good thing. To illustrate, my son is in a mainstream school. He has AS and is regarded as being mild (though there's nothing mild about his difficulties, etc!) in contrast to a non-verbal autistic child. I do think there's some value in being with neurotypicals as he wants to be like them and is learning from their behaviour (that can go both ways - learning good and bad behaviours). That's not to say this doesn't have it's difficulties, etc. But, I don't think it's good to lose contact with the outside world.

 

Caroline.

[baddad]

Sadly, these kinds of 'models' have historically always turned out to be disempowering and isolating rather than enabling and life-enriching. It is far easier to ignore a small island than it is to ignore a percentage of a larger population (and the wider networks they reach as part of that population), and other potential hazards (abuse/patronisation/manipulation/control) also arise as a consequence.

Many scandinavian countries had (still have?) 'disabled villages' like these, and it was always a case of warehousing rather than greenhousing. Same applies to British models (there used to be a number of 'CARE' villages in the UK, but they - and the ideology they promoted - seems to have dsappeared now), which effictively, despite the best intentions of all concerned in their establishment, were little more than 'ethical' instituitions.

I think providing all disabled people with sheltered/supported living opportunities should be a huge priority, and I think that 'disablity specific' (i.e. 'autism') environments could/should be part of that, but I don't think they should be isolated communities or that they should provide 'artificial' environments beyond the individual adaptations that a client/service user (whatever the PC term of the moment is!) may need to maximise their independence.

 

Trying to think of an analogy, the best I can come up with (and it's admittedly a poor one) is an Amish community. The difficulty is that an Amish community has one overriding shared religious ideology to 'unite' them, and the principles of that belief apply to all. Other than a shared dx, an autistic community has no 'collective identity'. That's not to say, of course, that in an Amish (or any other religious or ideologically united) community there won't be little cliques etc, 'cos there will be - but they will be 'secondary' considerations compared to the primary agenda of the collective.

 

 

L&P

 

BD

[edith simon]

Hi

 

I can see why those type of communities could be appealing – in the outside world people on the spectrum are expected to conform and fit in (and not necessarily be themselves). Also, neurotypical people, particularly those who know little or nothing about ASDs, can be incredibly judgemental. Certainly my ex-neighbours made my life a misery, showing no understanding or compassion for my son. We moved house. My overall opinion is that living in a community like the one you're suggesting isn't necessarily a good thing. To illustrate, my son is in a mainstream school. He has AS and is regarded as being mild (though there's nothing mild about his difficulties, etc!) in contrast to a non-verbal autistic child. I do think there's some value in being with neurotypicals as he wants to be like them and is learning from their behaviour (that can go both ways - learning good and bad behaviours). That's not to say this doesn't have it's difficulties, etc. But, I don't think it's good to lose contact with the outside world.

 

Caroline.

Dear Caroline,

I really do not think about isolation with outside world.If you want to be self supportive you have to go otside and keep contact continuosly with outside world on everyday basis as all other people in business.

What I mean is to live and work as a group in one place and with freedom naturally provided to go anywhere anytime and wherever yo wish.

To live and work together in my opinion would provide security,selfconfidence ,acceptence and opportunity to create new things and not to take up your energy with struggling with everyday non acceptance.

thanks for answer anyway,

all the best

edith

 

[edith simon]

Sadly, these kinds of 'models' have historically always turned out to be disempowering and isolating rather than enabling and life-enriching. It is far easier to ignore a small island than it is to ignore a percentage of a larger population (and the wider networks they reach as part of that population), and other potential hazards (abuse/patronisation/manipulation/control) also arise as a consequence.

Many scandinavian countries had (still have?) 'disabled villages' like these, and it was always a case of warehousing rather than greenhousing. Same applies to British models (there used to be a number of 'CARE' villages in the UK, but they - and the ideology they promoted - seems to have dsappeared now), which effictively, despite the best intentions of all concerned in their establishment, were little more than 'ethical' instituitions.

I think providing all disabled people with sheltered/supported living opportunities should be a huge priority, and I think that 'disablity specific' (i.e. 'autism') environments could/should be part of that, but I don't think they should be isolated communities or that they should provide 'artificial' environments beyond the individual adaptations that a client/service user (whatever the PC term of the moment is!) may need to maximise their independence.

 

Trying to think of an analogy, the best I can come up with (and it's admittedly a poor one) is an Amish community. The difficulty is that an Amish community has one overriding shared religious ideology to 'unite' them, and the principles of that belief apply to all. Other than a shared dx, an autistic community has no 'collective identity'. That's not to say, of course, that in an Amish (or any other religious or ideologically united) community there won't be little cliques etc, 'cos there will be - but they will be 'secondary' considerations compared to the primary agenda of the collective.

 

 

L&P

 

BD

Dear baddad,

please read my reply to Caroline.

Well I am just thinking what would be the more creative,the best for ASD adults.

all the best,

Edith

[edith simon]

Dear baddad,

please read my reply to Caroline.

Well I am just thinking what would be the more creative,the best for ASD adults.

all the best,

Edith

just to add that my son is 24 lives in the community and we experience lots of lots of problems that I would have never thought.

MY nephew is 30 and works and lives in the "normal" community" with lots of problems and needs continuous help in spite of higly functioning and having A levels.

So I am just searching what would be the best.

Thanks for your answers I really appreciate it.

Edith

 

[justine1]

just to add that my son is 24 lives in the community and we experience lots of lots of problems that I would have never thought.

MY nephew is 30 and works and lives in the "normal" community" with lots of problems and needs continuous help in spite of higly functioning and having A levels.

So I am just searching what would be the best.

Thanks for your answers I really appreciate it.

Edith

Hi Edith

It goes to show how different people on the spectrum are,doesnt it. I think it does work for some and not for others.Those that need extra assistance etc would benefit those who like complete independence and freedom will not.

 

A similar example would be sheltered accomadation for the elderly,my father recently became ill and now has to go into sheltered accomadation,however his needs are not the same as he is at least 15-20yrs younger than other residents and doesnt need help but he does need someone on call in case he has an "attack" so he isnt really wanting to go as he isnt very sociable and doesnt like to be "forced" into social situations(which can happen at such places.)

 

I think people also may assume that because its a close community they are like family and take advantage of that,ie popping in when they feel etc.

 

I do think some ASD people may benefit and I would personally prefer this option to ASD people aged 25+ still living at home and relying on their parents to take care of budget,food etc.(bearing in mind everyone is so different!)

 

On the other hand pat of it rings out "apartheid" in my head

[KezT]

I loved on a kibbutz for a while - the thing about self sufficient communities is that the people have to be very flexible and adaptable, and willing to make allowances for different circumstances. The standard of living also depends on who you've got! not sure that sits well with the need for routine/sameness etc most ASD people have

 

you also live cery much on top of each other - unless you are amzingly rich/sucessful, many kibbutzim do not necessarily have their own houses - hardly any have seperate kitchens and have to eat, wash, work and play communally. Most ASD people need their own space and quiet places and in countries where space is at a premium (like the UK) and buildings expensive, that is just not possible without an awful lot of money.

[cmuir]

Dear Caroline,

I really do not think about isolation with outside world.If you want to be self supportive you have to go otside and keep contact continuosly with outside world on everyday basis as all other people in business.

What I mean is to live and work as a group in one place and with freedom naturally provided to go anywhere anytime and wherever yo wish.

To live and work together in my opinion would provide security,selfconfidence ,acceptence and opportunity to create new things and not to take up your energy with struggling with everyday non acceptance.

thanks for answer anyway,

all the best

edith

 

 

Hi

 

Particularly when I lived at my previous address, where neighbours showed little or no compassion and understanding towards my son, there were days when I'd shut the curtains, lock the doors and just not want to go out. However, I had to force myself to go out. It's very easy to cut ones self off from others and in my view living in such a community could inadvertently or otherwise do just that - because of the 'safety' or 'comfort zone' factor. I also believe that people on the spectrum can benefit from interaction with those not on the spectrum (and vice versa!) given the nature of the disorder ie pick up social skills, etc. So, for people who may already find such things difficult, I think there's value in interacting with others. I do understand what you're saying about acceptance, etc, and that's could become an interesting debate, but the other side of the coin is that people with an ASD didn't live in mixed communities, how are NTs going to be educated and learn to accept people with ASDs? We need people that are different. Look at Bill Gates, Einstein, etc who are all reported to be on the spectrum - 'different' can be brilliant. We need mutual acceptance which in turn would allow people to be happy and content. Whether that could actually happen or not is a different matter.

 

Caroline.

[baddad]

I loved on a kibbutz for a while

 

A lifestyle choice, a freudian slip or just a typo?

Considering that you 'lived very much on top of one another' my guess is the former!

 

Going back to the OP I think from the message left for me earlier it's more about accommodation options rather than 'community living' (?) - the idea of, say, a housing project specifically for autistic people with work opportunities etc but still based in the wider community(?) [sorry if I've misunderstood, edith simon]. If so, that does sound like the kind of thing i mentioned earlier in relation to 'CARE' villages - but in all honesty they didn't really work and were (IMO) a bit patronising... that said, the 'idealogy' was nice in theory it just fell down in practice (and again, only IMO)...

Similarly, the Kent Autistic Trust grew out of a 'parents consortium' seeking accommodation for their children, and I had (historically) some major misgivings about that and the whole idea of LA authority funding being given to a charity with such a specific, targeted and personal agenda..

Sorry if that sounds a bit negative, edith, but thinking of other organisations too (the now defunct Manchester Disability Coalition for example) these things usually ended up going a bit 'Animal farm/Two legs good, four legs bad'. Or put another way, the new 'leaders', however idealistic their objectives, just ended up perpetuating the same mistakes. the danger with that in an isolated community is that nobody on the outside knows unless someone on the inside tells them.

 

L&P

 

BD

[trekster]

Hi Edith

It goes to show how different people on the spectrum are,doesn't it. I think it does work for some and not for others.Those that need extra assistance etc would benefit those who like complete independence and freedom will not.

 

A similar example would be sheltered accommodation for the elderly,my father recently became ill and now has to go into sheltered accommodation,however his needs are not the same as he is at least 15-20yrs younger than other residents and doesn't need help but he does need someone on call in case he has an "attack" so he isn't really wanting to go as he isn't very sociable and doesn't like to be "forced" into social situations(which can happen at such places.)

 

Have you considered the call aid system? As the patient falls over or has an attack of something they automatically call the help services which decide if an ambulance or named person should go and check on them.

I think people also may assume that because its a close community they are like family and take advantage of that,ie popping in when they feel etc.

 

That is annoying and can be upsetting for autisitcs in particular.

I do think some ASD people may benefit and I would personally prefer this option to ASD people aged 25+ still living at home and relying on their parents to take care of budget,food etc.(bearing in mind everyone is so different!)

 

On the other hand pat of it rings out "apartheid" in my head

 

Im in a housing scheme that operates south of Northampton. It limits me to only 16 hours a week of work which is the downside but includes a repair package and is for disabled folk on certain benefits. My 2nd housing officer is better than my 1st. ive also got a care package which i hope with the autism act will become more popular for anyone who needs home help to receive it!

 

[call me jaded]

I'm seriously thinking of Camphill for my son when he's older. A darn site more appealing than the local day centre - nothing enabling or enriching about that.

Edited June 25, 2010 by call me jaded

[Tally]

Most autistic people have friends, relatives, even partners or children who are not autistic. I think it would be chaos trying to organise a group of autistics - some people have said it is like trying to herd cats.

[baddad]

Most autistic people have friends, relatives, even partners or children who are not autistic. I think it would be chaos trying to organise a group of autistics - some people have said it is like trying to herd cats.

 

Herding cats is easy... you just train up a couple of rodents to do all the hard work for you - come, boy! have you never watched 'one man and his ferret'?

 

[Bluesbreaker]

Most autistic people have friends, relatives, even partners or children who are not autistic. I think it would be chaos trying to organise a group of autistics - some people have said it is like trying to herd cats.

 

I agree,

 

No offence to anyone on here at all, but i get on fine with fellow aspergers people, but when it boils down to Autistics (like i mean DX of classic autism) and stuff im normally either trying to resist ripping out my hair or shouting my head off in frustration...... i aint got time nor the patience for anything other than NT's and AS's if i was to live with them for s short period of time.

 

sorry for being like that and sorry if it gets to people, but i much prefer AS's and NT's in a living situation on a permanent basis

[call me jaded]

No offence taken!

 

Nice to have someone with AS saying living with classic autism would be difficult. I found it extremely challenging until I understood it.

[trekster]

I agree,

 

No offence to anyone on here at all, but i get on fine with fellow aspergers people, but when it boils down to Autistics (like i mean DX of classic autism) and stuff im normally either trying to resist ripping out my hair or shouting my head off in frustration...... i aint got time nor the patience for anything other than NT's and AS's if i was to live with them for s short period of time.

 

sorry for being like that and sorry if it gets to people, but i much prefer AS's and NT's in a living situation on a permanent basis

 

For me it depends on a number of things whether i can cope with autistics or not. When someone rings me up and can read the newsletter and the answer is on there but they think "it's quicker to ask Alexis" that bothers me, when it;s done before 10am that's even worse. Some autistic behaviours i can cope with the literal behaviour i have more tolerance for which is why i feel comfortable around foreign students but not necessarily around British English nt students, i like the Scottish and Irish accents and certain regions of the uk i get on well with those types of people generally more than others. Liverpool aspies who joke and keep a straight face (even the nts) are a bit much for me when in serious mode. There's this guy who keeps echoing what im saying and it sounds like a question, when i told him i knew and he'd told me 3 times already he walked out. Next time i will write the answer on a piece of paper and point to it.

 

Sorry im being a bit waffling today, ive dated non autisitcs and ive dated autistics from both ends of the spectrum. If i dated my asperger mate now instead of 15 years ago i feel it would have worked out better for us. The classic verbal autsitics ive dated were more repetitive than the asperger guys strangely enough (you would expect it to be the same), with exception to the 1st asperger guy the previous one i dated was a tease.

 

i tend to get on best with, people who dont wind me up (no such thing as just for a laugh), people who dont use the strongest swear words in my company, people who are respectable smokers, people who have some connection to the autistic community bar 2.

[trekster]

No offence taken!

 

Nice to have someone with AS saying living with classic autism would be difficult. I found it extremely challenging until I understood it.

 

Personally when in overload, shutdown/meltdown mode ones autism can appear classic.

[Mumble]

Personally when in overload, shutdown/meltdown mode ones autism can appear classic.

I think that's an unfair comment. I don't know you or you in meltdown, but the key issue is that a meltdown period lasts for a finite period of time. Individuals with severe Autism have severe autism 24/7. I work with kids with severe autism, some verbal some not, my brother has severe autism, and all I can say (and I'm sorry if this sounds selfish) is that it's bl**dy hard, continuous and I'm very glad with the kids I work with that I can give them back to their parents/carers at the end of the day. Don't get me wrong, I love the work I do, but it is really draining physically, mentally and emotionally and I couldn't imagine doing it 24/7 - it was hard enough growing up with my brother, but he had frequent respite and went into care fairly early.

 

[chris54]

I think that's an unfair comment. I don't know you or you in meltdown, but the key issue is that a meltdown period lasts for a finite period of time. Individuals with severe Autism have severe autism 24/7. I work with kids with severe autism, some verbal some not, my brother has severe autism, and all I can say (and I'm sorry if this sounds selfish) is that it's bl**dy hard, continuous and I'm very glad with the kids I work with that I can give them back to their parents/carers at the end of the day. Don't get me wrong, I love the work I do, but it is really draining physically, mentally and emotionally and I couldn't imagine doing it 24/7 - it was hard enough growing up with my brother, but he had frequent respite and went into care fairly early.

 

I would second the above. My son has HFA and as hard work as it is, it is nothing compared to some of the adult with autism I work with. Yes I'm glad to go home at the end of my shift.

[Tally]

Some autistic people can have conflicing needs as well. FOr example, some autistic people are sensory seeking and love rough and tumble play or listening to loud music. Other autistic people are sensory avoidant and hate to be touched and can't stand loud noise.

 

I think that a lot of autistic people find that life is tough and it's hard to get on with people, and assume that other autistic people would be easier to get on with. This is not always the case.

[call me jaded]

I find my 'classic' son very easy now as he rarely behaves in a way that surprises me and I know how to deal with his most challenging behaviours. He went to a new day care place a couple of weeks ago for a couple of hours and he ran them ragged, lol! Their mistake? Trying to engage with him! He's rarely in shutdown or meltdown though. We have a very calm house most of the time. My son's social worker calls me the chillaxed mum.

[Bluesbreaker]

I understand what Jaded says and also what trekster said about meltdowns.

 

Sometimes i am the same and if it is a severe 'tantrum' to give it a shorter commonly known name, then i will show behaviours similar to that of my ASD cousin, so dont dismiss it just yet, but granted as tally said it does also depend on their care requirements too which i fully appreciate.

 

I said it would do my head in because you are around it all the time 24/7 and it would do your nut in (i commend those who tolerate such conditions as part of their job, i take my hat off to you) and i think people would agree that you would miss the company of NT people, i certainly would.

[trekster]

I would second the above. My son has HFA and as hard work as it is, it is nothing compared to some of the adult with autism I work with. Yes I'm glad to go home at the end of my shift.

 

It is something my family have said to me as i end up at the stage where everything said to me will be taken the wrong way. Note i meant it temporarily as the spectrum of autism changes throughout the day. As for working with severe autistics (i think mumble meant non verbal ones) ive seen how a friend of mine copes with her son and i know it would test my patience as well.

[trekster]

I find my 'classic' son very easy now as he rarely behaves in a way that surprises me and I know how to deal with his most challenging behaviours. He went to a new day care place a couple of weeks ago for a couple of hours and he ran them ragged, lol! Their mistake? Trying to engage with him! He's rarely in shutdown or meltdown though. We have a very calm house most of the time. My son's social worker calls me the chillaxed mum.

 

i love that term chillaxed, it's cool.

[Bluesbreaker]

It is something my family have said to me as i end up at the stage where everything said to me will be taken the wrong way. Note i meant it temporarily as the spectrum of autism changes throughout the day. As for working with severe autistics (i think mumble meant non verbal ones) ive seen how a friend of mine copes with her son and i know it would test my patience as well.

 

thats what i meant, it would drive me looney i hate repeating myself at the best of times, particularly if i am in a CBA mood, lol. and im the same i still take a lot of things the wrong way but more so if its on MSN or via email and then that can throw an entire mood.....