The authors of this paper believe that we can learn from the words of adults with Asperger Syndrome how best to help children with Asperger Syndrome.
Many people with Asperger Syndrome are excluded from normal society. Many adults with Asperger Syndrome trace their problems back to childhood. They report that as children they were not able to communicate well with their peers and others. This paper describes how a support group helped one young woman with Asperger Syndrome learn to be with her peers. This Circle of Support consisted of a small group of friends who met often to listen to her and help her.
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Just around the bend...
Jul 26, 2009 by AnonymousSummer is half over and as with people nationwide concerns regarding bugdet cuts to services, inavailability of services that are supportive of our children on the spectrum and the dangers in the community that became more apparent as they get older abound. While I am sure parents overall have concerns about their children being at risk in their community this fear is exacerbated greatly when your child is often oblivious to these dangers because of social skill and comprehension deficits. In the past few weeks I have run into two friends whose teenage sons, once a part of a special needs support group which has fallen prey to the budgetary axe, both found themselves under arrest. I could debate the circumstances but suffice it to say that this is every mothers nightmare. So what do we do when the mainstream only hear about early intervention. It is as if by some misfortune parents who have not solved this exhaustive puzzle of advocating and searching for appropriate services and therapies simply no longer exist once their child falls out of that window the public eye envisions of a child on the spectrum. Beautiful doe eyed 2, 3, 4 and 5 year olds. What happens when they become 12, 13,16, 19? when insurance companies want to deem their progress insufficient and therefore not medicallly necessary? When schools have decided thier capabilities long before they max out at age 22? When they have too often become prey for others willing to exploit their disability? I lose sleep over the thought that my son will one day find himself in a compromising situation because of his inabiility to discern dangers around him, or people who would use him, hurt him.... So that is my thought for the week. How do you as educators, clinicians and parents affect change in the lives of our preteens and teens and adults with ASD so that mothers like me will not live this nightmare?
An hour of sunshine....
Jun 26, 2009 by AnonymousFor me this has been a week of discovery, decisions and disbelief. Discovery came in the form of the realization and finalization that my son’s autism support group had indeed fallen pray to budget cuts and that no 11th hour call for restoration would be forthcoming. I admit that while I have become a very strong advocate for my son, I took comfort in knowing that reinforcements were always just a phone call away, and that his support person would always be there for me to help me find the right program, piece of information or just sit quietly on the other end of the phone while I vented. Although she was often quick to remark that I was as much a support system for her as she was for me (she herself a mother of a child with special needs) it was the knowledge that she would be there when I needed her that had gotten me through many emotionally difficult and overwhelming times. I knew that in times of crisis all I had to do was break glass! People so often take for granted the importance of emotional support from those who get truly get it, so today I feel a void and a profound loss that I had not anticipated even though I had been forewarned.
Perhaps borne out of a frenzied grasp at trying to make sense of my world and indeed to genuinely make a contribution to my community, and the ASD community at large I have decided to return to school and complete my degree. Whoaaa, easy with the applause...do not read Masters, Ph. D. or anything so lofty just yet. Read Bachelors of Science (Human Services). Many, many…(ok , to be blunt I left school mid-junior year…my son is now a junior in college, you do the math) years ago I fell on financial hard times and left school saying I would return in a semester, maybe two. Life happens. At least now I know what I want to do when I grow up.
Disbelief has come for me as it has for the world that we have lost two pop icons in one day. While you may or may not have been a fan of one or both, their contributions to music and cinema, as well as to humanity were monumental and should not be diminished. So maybe it’s just the unrelenting rain, or the overall feeling of sadness at this loss that has cast a dark pall over my day. Suffice it to say that I can only sum up this weeks blog with these thoughts…Time is too precious to wallow in negativity, regret, superiority complexes, inferiority complexes, grief, despair and pain. This week Joshua shaved almost 7 seconds off of his 50 meter freestyle meet time. Not quite Michael Phelps and no, he did not come in first place, but in my eyes he is a winner. Today the sun came out for an hour where I live (it has been raining almost nonstop all month). That’s what I want to remember about this week, the little wins and that brief moment of light and warmth. God bless you all!
understanding my 18 year old - Danielle
Mar 16, 2008 by AnonymousI'm new to so much of this, but I thought I would explain, then ask for guidance. Born in 1989, she was diagnosed with Juvenile Rheumatoid Arthritis as age one. Multiple hospitalization, didn't walk until age three and a half, didn't talk until age three, for years all was assumed related to the JRA. Open heart surgery at age three due to an atrial septal defect, again more delays. Speech therapy up until her 8th grade. We held her back in the 3rd grade due to maturity issues. We have had her tested at school three different times for a learning disorder to no avail. She always tested below average, but not extremely significant. Pediatricians and specialist never could quite put their finger on it. TEACH program at Chapel Hill was an option, however, out of network and not within our budget and 2 hrs one way. When she turned 18 we got her in to see a psychologist and several visits later we have this diagnosis of Asperger's Syndromel. I'm grateful to have a diagnosis, however, I feel helpless on what to do. She is a senior, hopefully graduating in June. No support groups in our area. How do I help her gain some independence? be safe in society? My patience wears thin at times when she seems to be coming into the "teenage girl years" of boys.
A "plan" for the future from her is just not in the real world. Will she make it to college? She works at a grocery store part-time, but has been counseled related to her "social skills" - inappropriate at times, lacking at times at the register, literal always thus confusion. Suggestions are welcome. Thanks for reading.
Our first support group meeting
Oct 18, 2006 by AnonymousThe kids are in bed now, and it's quiet in the house except for the obnoxious voices of the South Park kids insulting each other on TV. (My husband is a fan.)
We just got home from our first Autism/PDD support group meeting at Thomas' school. It was just...okay. There weren't very many people there and the kids gave us a hard time about being dropped of in the classroom designated for childcare. (That is one great feature of meetings at Thomas’ school: classroom aids volunteer to take care of your children while you’re in a support group or workshop.) We talked about insurance issues some. That subject was brought up because everyone is having trouble getting insurance to pay for any therapy services. It seems like insurance companies are of the belief that autism is a behavior disorder instead of a neurological disorder, or that it isn’t “curable” so they’re not willing to shell out for services that won’t cure anything.
We also noticed that everyone in the group tonight has utilized private therapy for their children except us. It makes me wonder if we’re doing enough for Thomas. After tonight, I may look into occupational therapy services for him since I think that sensory-seeking behavior is his biggest problem.
We also came to a milestone today in Thomas’ educational career for this year: He had his first “difficult” day. Thomas’ teacher sends home a sheet every day that lets us know what book they read in class, what activities they participated in and what their “job” was for the day (i.e. passing out cups at snack time, bringing the attendance to the principal’s office, etc.). At the bottom of the sheet are three boxes. In the first box, it has a picture of a happy face and the word “good.” In the second box, it has a not-so-smiley face and the word “okay.” And in the third box is a face with a crinkled-up mouth and a furrowed brow and the word “difficult.” We were a little confused, because “good” had been circled and crossed out, and “okay” had also been circled and crossed out. That left “difficult” which was clearly circled and not crossed out. This sequence of circles and Xs leads me to believe that his day started out good and got progressively worse.
His teacher did mention in the note that he did a good job during the fire drill. Since the fire drill was undoubtedly held before his day went from “good” to “okay” to “difficult,” I am sure that the fire drill had something to do with his behavior. The change in schedule at school almost certainly threw him off. This evening, one of the aids from his classroom had volunteered to watch the kids during the support group meeting, and she mentioned that a lot of the kids had a difficult day today.
I guess fire drills will do that to a special needs kid.
As for the Autism/PDD support group, we think we’ll go again. I hope that more parents come next time. I was a little disappointed that the mother of a boy in Thomas’ class who had urged us to come to this meeting wasn’t there tonight, but I’ll hopefully have a chance to talk to her another time. She mentioned that her son’s neurologist had prescribed for him a medication typically used to help victims of Alzheimer’s. It had apparently improved his behavior so much that he was recently un-diagnosed with autism. I was expecting more of that kind of thing from this meeting, like networking and sharing ideas. It was more of a sob-fest tonight, and I’m not really interested in that. I don’t have a problem talking about Thomas’ difficulties, but talking about them and learning new ways of coping with them are two different things. I want to know what to do when Thomas is crashing into me or banging on a wall with a wooden puzzle board!
Yesterday, I ordered some very old-fashioned diapering products from a great website called www.pottytrainingconcepts.com. I ordered cloth training pants and rubber pants to go over them so that when Thomas gets wet, he’ll feel wet and hopefully be inspired to pay more attention to his bodily functions. As soon as we get the products, we’re going to swear off disposable diapers the following weekend and stick to it. I’m a little worried about sending him to school like that, but his teachers told me to just put a sticker on his clothes that says, “I’m wearing training pants today” so they’ll be prepared for some unsavory bathroom moments.
That’s all for tonight. Thanks for reading!