Scouting with Invisible Disabilities

[kenk]

Yeah, I get what you're saying - I'm actually a statistician by trade.

 

I assumed that by "general population" they were referring to non-autistic population, so, for example, out of 1 million people:

 

Non-AS: 995,000 people, of which 100 w/ perfect pitch

With-AS: 5,000 people, of which 250 w/ perfect pitch

 

The information was taken from an article I read by Donna Rosinski, from a Madison, WI Autism group. I have also read some other articles that say those with autism don't have such unusual pitch capabilities though.

 

One thing I have found is that the AS "support community" is small enough that information gets borrowed and it is pretty easy for unsubstantiated opinions grow into fact.

 

The truth is that there is not a single Aspergers Syndrome blue print. Each child has a similar, yet unique mix of AS traits. My son's AS is milder than many, though he still shares at least a bit of everything listed. There is another boy in our Webelos den whose parents thought had AS (I never heard if he'd been officially diagnosed but I "know" he does) and his issues are more pronounced than my son's and yet quite different. For example, in the area of senory perception, my son hates loud noises, wet stuff (though he loves to swim), and uncontrolled movement (roller coasters), but the other boy hates to be touched.

 

Another example is that AS kids tend to have a "specialty" subject that they focus almost all their efforts on. The other boys focuses on presidents and history - has for all four years that I've known him. My son on the other hand has rotated through a series of subjects and doesn't seem nearly as absorbed by them.

[evmori]

OGE,

Thanks for the vocabulary lesson.

 

My daughter was a starting guard on her high school basketball team & there were never any special signals used for her. She paid attention. My son does the same. They were both taught they need to be aware of their surroundings & what's going on around them. They were taught not to depend on others when they should be depending on themselves.

 

I agree with scoutldr. When I go to summer camp, I am spending one week of my vacation. And while I am at camp, I usually help out at the commissary or the waterfront or where ever I can. Expecting an adult to be devoted to one Scout who is not their son for an entire week is totally unreasonable & selfish.

 

 

Ed Mori

Troop 1

1 Peter 4:10

A blessed New Year to all

[scoutldr]

As Covey said, "seek first to understand, then to be understood." I spent several hours last night reading about AS and autism. What I learned is 1) it is a real disorder with varying presentations and degrees of severity...no two kids are the same. 2) there is no diagnostic test...diagnosis is based on behavioral traits. 3) It is very hard and even scary to be around AS kids and if there is to be peaceful coexistence, many accomodations need to be made. 4) Most AS adults are successful with a normal to high IQ, but tend to be thought of as "geeks" or "weird". 5) there is a strong genetic component; often one of the parents is also AS. One epidemiologic theory is that Silicon Valley has attracted many AS adults to one geographic area and they are proliferating, which could account for the rise in incidence.

 

That being said, I hear your frustration and desperate desire for your son to be happy and successful. I sympathize and won't say I understand, since I had two sons who are apparently "normal" (whatever that is). But it seems to me that, for the AS kid, a typical scout camp would be such a hostile, unfriendly environment, (full of noise, heat, bugs, crowds, chaos, etc) that I wonder why anyone would want to subject them to that. As you alluded to, and the literature confirmed, the Middle School years (i.e., Scout years) can be the most cruel and hostile. Middle schoolers are typically not "friendly, courteous and kind" and, to coin a phrase, that's just how their brains are wired. From the literature I read, something like a special needs camp, or a computer camp, or a music camp would be much more "AS friendly", since most AS kids are fixated on ONE thing and having to multi-task (such as taking 5 different MB in one day) only frustrates and angers them. And, as I said before, perhaps there is enough demand that your Council should have an "AS week" at camp, where their needs can be more adequately accomodated. Sounds like a perfect Wood Badge diversity ticket item.

 

I also want to agree with kenk that Scouting has a place for all boys...in the proper environment. I myself spent an entire week at the camp pool teaching a Down's Syndrome scout how to swim (the entire troop was "special"). I was "volunteered" because of my quiet, patient nature. At the start of the week, he would go in no farther than his ankles. At the end of the week, he was jumping in and putting his head under. Small victories. But the reward came the following year when his SM told me that he spent the rest of the summer telling everybody how proud he was that "Mr. M" taught him how to swim.

 

I didn't mean to say that the troop leadership was totally off the hook. Of course, every scout (and parent) should have a copy of the Troop schedule and calendar (at least 6 months at a time). Understanding, of course, that schedules need to be flexible because "stuff happens". The "special signals" are also a good idea, and not unreasonable, as is having an educational session for the other scouts. But a scout needs to learn that if he exhibits un-scoutlike behavior, such as grabbing and destroying someone else's property, the consequences need to be fairly and equitably applied to all. There are certain behaviors that can not be accomodated if we are to be safe and adhere to the basic program.

 

Also, I have to say that that many adults spending a week of leisure at the Troop's expense is totally out of line. I would have to object to that, if I were you. Reasonable would be that the troop pays for two (2-deep leadership is required), and the rest pay their own way. I also have to remind everyone that 1-on-1 contact between adult/scout is strictly prohibited. We are lectured on this every year at camp, so having a non-parental adult shadow a scout full time is not a reasonable expectation and violates all our training. We are NEVER to allow ourselves to be alone with a scout, out of sight of others.

 

Thank you for this thread. While you started it out of frustration, it has been highly educational for all, I hope. No offense was intended; just trying to express all points of view.

[OldGreyEagle]

Ed, don't worry, this will be my last post on this subject, but expecting an Asperger's scout to "learn to pay attention" is as ignorant a statement as has been posted here in quite awhile. I agree that if a scout needs individual attention, it must be the product of work between troop and parents. But to merely say the Aspeger's scout merely needs to pay attention better is simply ludicrous (and I dont mean the singer)

[evmori]

Ed, don't worry, this will be my last post on this subject, but expecting an Asperger's scout to "learn to pay attention" is as ignorant a statement as has been posted here in quite awhile. I agree that if a scout needs individual attention, it must be the product of work between troop and parents. But to merely say the Aspeger's scout merely needs to pay attention better is simply ludicrous (and I dont mean the singer)

 

OGE,

I never posted anywhere I expect an AS kid to "learn to pay attention". I posted that is what my daughter did. You sometimes read into things a little too much.

 

Ed Mori

Troop 1

1 Peter 4:10

A blessed New Year to all

[ScoutNut]

whoops!(This message has been edited by ScoutNut)

[AwHeck]

We are fortunate in that our troop only has a handful of special needs youth. We have quite a few on meds for ADD however only one comes to mind as a significant problem on meds or off. Over time, however, he has become better. We had one youth who was bipolar and the parents had not shared this information with the troop leadership. We had major issues with him at summer camp when he was 15 or 16 and only then (when we were calling the parents to come get him) were we told of his issues and that the way we had handled the situation was "totally wrong".

 

We also have one scout who joined the troop last February who is a high functioning autistic. His parents knew one of our ASMs and had several discussions with the ASM prior to their son joining the troop. The parents have considered the realities of a scout troop and their son's unique needs. They stated up-front that one or the other would be present at all meetings or campouts that their son attends. For certain situations, we have had an older scout agree to be his "buddy" and this has worked out well. We do a full day "New Scout/New Parent Orientation" in March of each year. The scouts are in a rotation of classes completing all requirements for the Scout rank and beginning the requirements for the Tenderfoot rank. For this, we had an older scout shadow him and they developed quite a bond. Many of the scouts in his patrol were with him in cub scouts so they are aware of his challenges. The PLC was briefed about his condition when he first joined. For summer camp, his mother came along and accompanied him to his merit badge classes. I have been very impressed with his mother in particular. She is watchful but does not hover.