Asperger Syndrome Group
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"HAL 10000" tjo...@lastexit.freeserve.co.uk
Hello, Everyone.
We are a small support group of parents whose children are diagnosed with Asperger Syndrome and based in the West Midlands - England - we would like some advice on how to tackle our Social Services with regard to their apparent lack of funding for residential care.
Any advice would be appreciated.
Regards, Terry Walsh.
Robin May celloph...@btinternet.com
Residential care for asperger's syndrome? Is that really necessary? Could you give some more details please.
"j9" j9...@ntlworld.insert com here
good grief, for a moment then I thought HAL was back Janine ...
"Laura" LLS2...@aol.com
I also wonder what this poster means by residential care for Asperger's Syndrome. Residential care must mean something like a group home. Why would someone with Asperger's Syndrome need that kind of care?
Laura, AS ...
"David Gardner" da...@pipco.freeserve.co.uk
Maybe they mean something like the NAS do, where they arrange housing from the local council (?) and provide carers during the day / sleep-in overnight, to help them out with whatever they want to do.
Remember that not all aspies are like you or me, some are quite low-functioning.
Dave ...
Vicky eye-expr...@home.com
Oh you mean like me! :) Vicky/ AS adult
Kalen para...@intelligencia.com
Some people with Asperger Syndrome cannot take care of themselves effectively. Someone who used to post here is diagnosed PDD-NOS, has a job, and travels independently yet lives in a group home. Many adolescents require residential care because of aggressive or other anti-social behaviours. I lived with friends who took care of all my practical needs (sort of like adult foster care, but not official) when I was 23. If I didn't have my own family, or if I could have them with me, I would do it again in a heartbeat. Unfortunately, those very few supported living situations that do exist for adults who are "high functioning" never have provision for non-singles. I am currently filling out my disability benefits application and it's really becoming clear (moreso than it already was) how much better off I'd be with some constant or near constant support.
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Kalen (ASD) partner to Ian (AS) mom to Kendra (5, severe NT) and ? (-26 wks) Read my writing at: http://www.themestream.com/authors/705065.html
Kalen para...@intelligencia.com
And some still live with their parents at 26, right? :) And there are those who would live with our families if we had any worth living with.
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Kalen (ASD) partner to Ian (AS) mom to Kendra (5, severe NT) and ? (-26 wks) Read my writing at: http://www.themestream.com/authors/705065.html
lls2 ...@aol.comspamfree (Laura)
I'm replying with the AOL newsreader. The news.cis.dfn.de reader, which I prefer to use, isn't working.
Now, back to the topic of this thread. I wonder if these lower functioning "Aspies" really have Asperger's Syndrome. Not every pdoc uses the same criteria to diagnois Asperger's. Is there an Asperger's Syndrome spectrum with a lower and higher end much like the Autistic spectrum? Tony Attwood was at a Future Horizons conference that I attended, and he mentioned a spectrum for Asperger's.
Laura, AS Remove "spamfree" to email.
Kalen para...@intelligencia.com
news.cis.dfn.de is a news *server*, not a news *reader*. You can access news.cis.dfn.de with almost any newsreader (probably not AOL, they're weird). I also access the group through the same news server and haven't had any problems other than it being a bit slower than usual maybe, so you'll All that's required to distinguish AS from Autistic Disorder is an average or higher IQ and no severe speech delay. Someone could have a normal IQ and reasonable (or even very good) language and still have severe impairments in practical and social skills.
I would say it's not as wide as the entire autistic spectrum. No one with Asperger's is profoundly retarded, non-verbal, etc. as we usualy think of "low functioning autism". On the other hand, there are definitely degrees of impairment even within Asperger Syndrome.
I have not heard people refer to it that way much, but I do see occasional references to "mild" (ick!) and "severe" Asperger Syndrome.
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Kalen (ASD) partner to Ian (AS) mom to Kendra (5, severe NT) and ? (-26 wks) Read my writing at: http://www.themestream.com/authors/705065.html
"Larry" N...@larry-arnold.com
Well some people just can't be bothered to take care of themselves it seems.
I have failed to sort out a replacement cooker yet as it did not bother me not having a cooker, as I could eat at college, but now it is easter and I have two weeks vacation, I do not have a cooker, woe is me. Thank heavens for the microwave and the chippie :)
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Larry L'autisme c'est moi ...
Alwyn al...@dircon.co.uk
I see the Asperger spectrum as part of the autistic spectrum.
Also remember that some high-functioning autistics, like Kalen, may now have better general functioning than some people with an Asperger diagnosis. The latter is dependent on early language development, which becomes irrelevant once the HFA has developed adequate language skills.
Alwyn
"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Laura, I wonder that too, but according to the most widely used criteria (DSM-
IV), people with Asperger's syndrome are regular autistics but with an average or above average intelligence (average isn't all that bright, especially when inhibited by a disability like AS, and other possible learning difficulties like dyslexia, audio-processing difficulties etc.) and verbal skills developed at the normal age (which again is quite a large range, as some babies can talk at 9 months and yet they don't worry too much if a child is still non-verbal at 18 months).
So, some Aspies could be average intelligence, late-but-normal speech with dyslexia, dyspraxia and other neurological and learning disabilities. They would be a low-functioning Aspie. In reality, most of the Aspies I know requiring residential care are either as I've described, or they have additional psychiatric or emotional difficulties (I know three who were abused in foster care as kids, for instance).
Sadly, not all Aspies get the same chances in life. I often wonder how I would have turned out without a loving, supportive family.
True. Some call Asperger's any verbal autistic, regardless of intelligence. Others call Asperger's any intelligence autistic, regardless of verbal skills. The dividing line between Asperger's and Kanner's (or "Cl***ical") autism is not a precise thing, and to a large extent, is an artificial construct.
Asperger's is part of the Autism Spectrum. It's just a form of autism, not a separate disorder. Dr Simon Baron-Cohen encourages people to use the word "Autism" or "ASD" to describe the lot of us, and one of his people predicted that the term "Asperger's Syndrome" is probably going to fall out of favour. He reckoned the only reason it was still in vogue was because of prejudiced and fear about the word "autism". I now say I am autistic and Asperger's, interchangeably. If people ask, I tell them that AS is a kind of autism, which it is.
Yes, Attwood is very keen on the term "Asperger's Syndrome". Of course it has a spectrum - it's part of the Autism Spectrum! I just wonder if Attwood is keen on using the term AS due to the fact that that is the title of his best-selling book? ;oP
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Anna H., Alien Visitor
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The alt.support.autism FAQ is at http://www.ratbag.demon.co.uk/anna/asa/asa_faq1.html
Dave Spicer drspi...@bellsouth.net
"Chippie"?
- Dave, curious, and on the wrong side of the pond to know what one is :-)
"bidkev" bid...@primus.com.au
A Plaice:) that sells Fish and Chips (UK) in Oz (my local chippie) they also sell about 10 species of fish, battered squid (they knock them about a bit before cooking :) Chinese (not so) niceties such as spring rolls and dim sims, chiko rolls, burgers works (ozzie style), sandwiches, prawns (fresh and cooked) in fact nearly all available seafood including crab and lobster.
I always thought of fish and chips (UK) as a "subsistence" meal, until the common fisheries policy (EEC) destroyed the UK fishing industry and doubled the price of fish overnight.
Here, I consider it as a "cullinary experience" befitting only of special occasions such as Good Friday. Off to chippie soon :-) Family Pack.... My meal for 7.......14 calamari, chips for 7, 5 sea food sticks or fish burgers, 2 flake (shark), 5 seafood bites, 2 prawn cutlets...less than A$30 a lot for us but cheap for a special occasion.
BTW a Hungry Jacks (Burger King) Family Meal...... 2 whoppers, 2 cheeseburgers, 4x chips and 4x drink (continuous refill) A$10.95. Bought twice it fills all of us and I get to have *two* meals :) 7 ice cream cones A$2.10c BTW why *do* people buy large soft drinks in "free fill" diners? are they too lazy/thick to buy a small and go back for a fill?
kev
"dizzi" di...@spincity.com
lobster.
A 'chippie' is also a carpenter (because of the wood chips, I guess).
:-) dizzi
"HAL 10000" tjo...@lastexit.freeserve.co.uk
Wow!
Some criticism and not really any help!
Where did I go wrong?
Let me put my original question another way then.
My son would not be able to survive on his own and this is why he desperately needs residential care.
For instance, he is vulnerable in many respects, has no concept of money, cannot socialise, cannot defend himself, has to be constantly reminded to change his clothes on a daily basis, cannot understand the filling in of forms, is highly intelligent but does not know how to use his intelligence, cannot buy his own clothes - need I continue?
Chris needs help and not criticism and I thought that at least someone on this group might be able to offer some credible advice to us, his parents, on tackling our inept social services.
Can we try again please?
Regards, TJ.
Alwyn al...@dircon.co.uk
A 'chippie' is a fish-and-chip shop. The fish is deep-fried and usually covered in batter. 'Chips' are roughly equivalent to what is known as 'french fries' in North America.
All chippies sell food to take away (American: 'to go'), but in the larger ones, you can eat on the premises as well.
Alwyn
cyberma ...@aol.com (Cybermaurn)
<< Wow!
Some criticism and not really any help!
Where did I go wrong?
Let me put my original question another way then. >> Oh my ! I'm sorry that you got this impression, TJ. Maybe I've missed posts, but what I've personally observed have been efforts to clarify rather than criticism...from *my* perspective. Perhaps the directness often ***ociated with AS threw you off ? The idea of your visiting the FAQ is agood one. Frankly, I have been anxious for you to post again, to clarifythe need....but also to hear what is (or isn't) available in your homeland.
I think another complication is that many of us are not in UK, but from the USA or "down under" ...and do not know of services in your area.
<< For instance, he is vulnerable in many respects, has no concept of money, cannot socialise, cannot defend himself, has to be constantly reminded to change his clothes on a daily basis, cannot understand the filling in of forms, is highly intelligent but does not know how to use his intelligence, cannot buy his own clothes - need I continue? >> Although it is largely irrelevant, someone like Chris would fit in very nicely in what we call "ISL placement" here in my area. (Missouri, USA). I am back working with developmentally disabled adults again --small group home---which often serves as a "stopping place" prior to an "Independent Supported Living" situation.As to this particular organization's "ISL" , it is another house, but without round the clock staff of the group home. plus the high level of help for several.
Other forms of "ISL" could be a row of apartments with one for "live in" or "paid neighbor" staff, who might only come in to check on meals, help with finances, etc. IOW, the theory is that the extent of support should be only what is needed by the individual, not holding them back, and that at "levels" such as mine we may be able to teach the skills necessary to more independence (*if* desired by resident). That is, some would rather have the , so to speak, "family", and choose to stick around.
This could be confusing, as I am part of this NG in relation to my son Tim, 18, who has Autism, but not of the HFA type. He has the extremely good fortune of living for a time in his own apartment with one on one staff. (He is still in school days). Not to get too wordy, this "luck" is only fair, as his prior ISL "providers" turned out to be crooks and he had to have an emergency transfer.
Whereas I miss Tim so ( he lived with me & his sister until 14.5 years old ) I recognize that this is awfully good for him. He misses Mom, but is thriving as to skills. I think it is "cost effective" as well. Even though Tim is still fundamentally non-verbal and has never exhibited near the IQ ***ociated with Asperger's, (last test ---53), he will be wanting to live with "friends" in years to come.
I can see that he will fit in fine...even with "higher functioners" who may prefer small group living, due to his peaceful environment now. I will see that he is ***ertive as to his need for "down time, alone, when he needs it. Also, he will have to learn not to do the chores others should do---not to be so anxious to help that he gets used! :O) Added to all this, by "reading between the lines" as a NG member , you may detect that I left my profession and started working in this field, and even moved first Tim, then me, to get in an area with better services ----as well as to learn how to do & get the best for him. It is still at least a "part--time" job coordinating this and "mediating among services" with Tim in placement.
<<Chris needs help and not criticism and I thought that at least someone on this group might be able to offer some credible advice to us, his parents, on tackling our inept social services.
Can we try again please? >> Perhaps this post seems like the "sorry wrong number" call where the parties ironically go on & on chatting due to accident. :O). I have gone forward with it because I am surmising , from lack of direct specific response from UK, that services are even more overloaded there than here. The fact is, you *may* have to create them! Yes, this is the head-long knocking over , then rebuilding, the proverbial brick wall we (sadly) all have to do as parents. I speak of ideals and theory, and staff & parents fighting for "the best" on a daily basis. In truth "placement slots" typically get overloaded in a heart-wrenching way. For example, placement slots are often so few compared to need that only " emergencies " get them. My son was an "emergency" originally, as my heart started to go. Then as noted, his providers turned crooked, but we got him out before substantial neglect.(Eternal vigilance!) Often, sadly, the emergency is someone locked into aggressive behavior so bad that the family has to get them "out". Such persons are really *not (at such times) compatible* with the environments I describe, the atmoshpere fostered where I work now and appropriate for my son and --apparently, at a different level--for yours.
The very best of luck, and *please* stick with us ! It was a misunderstanding, is all. I hope that what I have shared is helpful, at least from your "advocacy for services" standpoint.
Maureen
"Larry" N...@larry-arnold.com
A carpenter is not a lot of use when you are hungry. A chippie is a place selling fish and chips and at least there is one in my street, though I have stocked up on microwave meals for the time being.
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Larry L'autisme c'est moi ...
"Larry" N...@larry-arnold.com
I cannot help but think you are being overly negative about your sons future capabilities.
I tell you now that changing your clothes everyday is not the most important survival tool. In fact to me maintaining some semblance of an unchangable appearance is more important. Apparantly Einstein had a whole wardrobe full of identical suits so he would not have to take up time choosing what to wear, what a sensible man.
I could not tie my laces until I was 18 and had never been away from home for more than two weeks when I went to University in 1974, but I managed somehow. As for money, I have little to do with the stuff. It all goes into the bank and I just sign for the plastic I use. Standing orders and direct debits take care of the rest.
I think your post has set up in a number of readers the spectre of victorian institutions and the sort of long term "care" that people were subject to in the past on very little justification.
Could you be a little more forthcoming about what you would like to see for your son.
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Larry L'autisme c'est moi ...
"Laura" LLS2...@aol.com
Please forgive my ignorance. I'm not real familiar with the difference between newsreader and news server.
That's very true. Sometimes, even NTs can have trouble with practical skills like cooking, cleaning, filling out forms, paying bills, etc. My step-father has problems filling out forms and prefers to ignore bills (my Mom's job), but I doubt if he's an Aspie. He does have an obsession with the Christian religion though.
I've noticed from reading this group that everyone with Asperger's is different and has different ***ociated problems.
The definitions of what constitutes "mild" or "severe" Asperger's can vary depending on one's situation and outlook.
"Laura" LLS2...@aol.com
I was nearly 11 years old when I finally tied my own shoes. By the way, I agree with most everything you wrote in this reply.
Laura, AS ...
"Laura" LLS2...@aol.com
I'm sorry if I over reacted to your post. I was just curious. I have Asperger's myself. There are some so-called normal young people who might have trouble surviving on their own too. Not everyone is ready for independence and responsibility at 18. Of course, if a person never learns to be responsible with money or how to care for him/herself, then that is a cause for concern.
Not socializing can be problem, because it can lead to depression and loneliness. I have quite a bit of experience with this. However, I don't see how a lack of socializing would have anything to do with being unable to care for one's self.
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"HAL-9OOO" HAL9...@2OO1-space.odyssey
Oh dear. Someone, perhaps an earthling, has chosen a Nom de Mouse similar to mine.... I'm afraid I shall have to pout or somesuch til it goes away. Alas!, it doesn't give me enough of a real name to mangle in my typical digital fashion, such as Mark Probert aka Bertram Pork.....
HAL9OOO, the one, the only, the original.... p'raps he doesn't remember what happened to those astronauts who crossed paths with moi...
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