Dear All,
Could anyone who has Asperger's Syndrome or knows anything about the condition please tell is if there has been any research done on children with AS to help them reach their full potential from a "Social Model" viewpoint.
We are doing a Lit. search for the "Research" Module of our course, so if you could give us any leads, synopsises, bibliographies, etc.we would be MOST GRATEFUL. If you read the following extract from my journal you will know a bit more about our subject...
"13th June, 2001
Week 7. Workshop.
Today Mark, Fiona and I met with Linda, the person from the Asperger's Support Group that meets in Ocean Grove. What a dedicated mother! - she's the one who got in touch with the college in the first place… So we are VERY LUCKY, Mark and Fiona and I. We did NOT have to look for a group. It came to us. However, this means, of course that we did not get the practice of negotiating.
Apparently the Support Group knows a lot about Asperger's syndrome, the Disability Discrimination Act, etc. - she gave Mark a diskette which when Mark printed out was enough to fit into a A4, inch thick, folder!! No, what the group wants is some assistance in getting help for their children. They are getting NO support at all from the government, and so are NOT doing as well at school as they could be - given that usually their I.Q's are usually very good.
So the four us conferred, but we didn't know exactly what was achievable - given our time constraints and the fact that we are only students as yet. Linda said that the group would like some money to go to conferences, buy books, etc. She also said that the group's children could benefit from having integration aides in the classroom.
We asked when their next meeting was and she said the following Monday. We asked whether we could attend and she said she would ring the Psychologist and ask, but that she was sure that it would be O.K. We said we would speak to John to see what we could do in our Research Project and come and put a proposal to the Support group that is facilitated by a psychologist, by the way.
So, it seems that the group has most of the knowledge that they need. (After all, they live with their children!!) What they want is something to give them a strategic edge when it comes to helping their children's teachers understand Asperger's behaviour patterns and putting their case to government bureaucrats and officials. We shall have to talk to John & Joan.
20th June, 2001
Week 8. More skills. Evaluation.
Last week after the meeting with Linda in the morning, we saw John about the Research for his class. We had decided that we would do a piece of research based on a questionnaire about the children of the Ocean Grove based support group. We worked out a set of questions which John sanctioned. and Fiona typed up. We had worked on a QUESTION PROPOSAL (a hypothesis) beforehand in John's class that he had also Okayed. We shared they cost of photo-copying the questionnaires. And I will give Mark some petrol money.
We are fortunate, I think that we are such a small group with an over-riding interest in our topic. We don't seem to have any "differences" to iron out.
I suggested to Mark that he and I (for Joan's class - this one) should think up a project as we had so little time - we came to this group late, of course, and had very little time to negotiate a project that would be feasible for us to complete. He demurred at first, then suggested his "manuel" for teachers and parents. I said I would do some research on it, and the "Frontispiece" if he would write the manual.
After all, he has "insider" knowledge.
We both knew we should have asked people what they wanted; howver we felt that time constraints were pushing us along.
So Mark and I (Fiona could not come unfortunately and I had to skip a "Social Connections" planning meeting to be there) went and saw the research group on Monday afternoon. (It was lunchtime and the young ones who escorted us to the right office were cute: they saw my black-t-bar shoes and asked if I was coming to school! When we said we had come to visit from college they were suitably impressed.)
Mark told the group that we had considered Linda's requirements and come up with an idea that we THOUGHT would go some way to giving them ammunition with which to achieve their goals. We told them what classes we were doing and explained we had a timeline. They were happy with that and happier still when Mark told them that our findings were really THEIRS and they could use them as THEY saw fit to lobby school teachers/principles, school councils, COGG, the State Government, etc. The findings would be their property, NOT ours.
We left them with all the copies of our questionnaire. They said they would photocopy any extra that they might need - there were some families that had more than one child with Asperger's.
I then explained that THREE of us were doing "Research", but only Mark and I were doing "Prac Strats" and asked if the manual would be OK. They all looked delighted. I think we did an internal evaluation and breathed a sigh of relief. So far, so good.
(I must say the parents in the group had looked upon Mark with something akin to awe when he told them his - sometimes turbulent -history; they all would like him to be a mentor to their children; he gave them hope for the future of their kids. One mother voiced their feelings, I think, when she said something like: Hear we sit, enjoying a rare opportunity to have several different conversations all going at once, and there you are, 'cool as a cucumber'!" [People with Asperger's syndrome are exceptionally, extremely, noise and 'hustle and bustle' sensitive, apparently.] Mark explained that he had taught himself to FOCUS on one conversation at a time.)
For me, I must say it was a delightful experience to be among a set of parents who did not treat me with any degree of "difference". That's because they had all come to the realisation that "disability" had more to do with the "labelling" tendency of society (in the realms of the "Social Model") and often, when it comes to daily living cannot be entirely situated in the "Medical Model", where the person with the impairment is seen as the "problem" to be "cured".
In the former case, ALL buses, taxis (we waited with a girlfriend THREE HOURS one day for a taxi for her) and trains need to be accessible (in some places in America and Europe for example, the trains are level to the platform), ALL doctor's surgeries need to have accessible premises and manageable equipment (for example I have to be weighed at my dog's VET'S!!!), ALL houses need to have one ACCESSIBLE ramp (otherwise we give people in wheelchairs (quite innocently, perhaps) the subliminal message that they are NOT WANTED ), all teachers would be taught about disability (instead of it being an "extra" in their courses, as indeed would all courses:architecture, law, medicine, hospitality, business studies, psychology, etc. as my friend at Deakin DRC, Jenny Shaw opines - she thinks "Disabilities Studies" an anachronism).
Otherwise as Rev. Dr. Chris. Newell, (the genethesist who uses a wheelchair), says we live with "AN APARTHEID THAT IS NOT NAMED!".
(It is interesting that Itzak Perlman the world famous violinist who has polio now WILL NOT play in opera houses and theatres with no lifts, dressing rooms and toilets big enough to accommodate his wheelchair, etc. He eventually got sick of being carried upstairs, dressing in corridors, etc)."
Thanking you in anticipation
Jai Guru Dev,
"Sundari - pronounced Soon(like lun in 'lunatic!')-DHE-ree" [my e-mail name].
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