Autistic scouts

[tagguy]

I had a scout with autism in the troop several years ago. His parent was actively involved with his activities,and I helped out,so that I could learn from him,as to what he likes,or not.He stayed for about a year and a half,and completed tenderfoot. There is a boy now in Webelos who is autistic. He has limited speech,and is a little high strung at times. It is possible that he may,or may not cross over. If he does, I would like any suggeations.

[infoscouter]

I have a son with autism, so hopefully I can help. I also work with our council's Special Needs district.

 

Autism disorders are described as being on a spectrum. This means that a wide variety of symptoms and behaviors can be included in the definition of autism. Behaviors can be quite mild or very extreme.

 

If the young man does join the troop, find out from his parents his specific behaviors and the management techniques his teachers and parents use to address them. Consistency across environments is important.

 

Naturally, find out about any medications he is taking.

 

There is a new edition of the Scouting for Youth with Disabilities Manual #34059

http://www.scoutstuff.org/BSASupply/ItemDetail.aspx?cat=01RTL&ctgy=PRODUCTS&c2=BOOKS_LIT&C3=PAMPHLETS&C4=&LV=3&item=34059&prodid=34059^8^01RTL&

It includes a section of working with Scouts with autism.

 

Here are some other resources:

http://www.boyscouts-ncac.org/pages/225_serving_scouts_with_disabilities.cfm?redirect=yes

 

http://www.boyscouts-ncac.org/download/3500_specialneedshandbook.pdf

http://www.boyscouts-ncac.org/download/2426_autism.doc

 

You may want to create an Individualized Scout Advancement Plan (a Scout version of an Individualized Education Plan)

http://www.wwswd.org/

http://www.wwswd.org/individual-plan.htm

 

Please let me know if you have any other questions

[FireKat]

We have an autistic scout in our troop. He joined just before my son. What seemed to help him was two things; first he attached himsrlf to my son who I have always tried to make tolerent of peoples' differences. My son did the best he could at his age to deal with the boy (sometimes not too well)

The other major affect was the way the older boys treated him. One was especially good at including the autistic boy in activities.  This was done on his own, no adult influence.  His patients with the autistic boy was something to watch.  He went from being fairly closed down to a very active member of the troop.

If you have some kids in your troop who could function in these ways to help the boy be more comfortable it might make him wish to stay.

Oh, we are not a troop of special needs kids, just a regular troop in a small town. Hope this helps a bit.  Kat

[Ahoydave]

I have been a scouter since before my autistic son was old enough for tigers. My autistic son is about to turn 18 and I do NOT plan to continue my involvement with scouts. At every turn, I have had issues dealing with various aspects of scouts and the nature of autism. At no time was my son's behavior one of these issues. Unlike "normal" kids, he is far less of a behavior problem than most. I have been an adult leader for many scouts and the way my son has been ignored goes beyond frustrating to down right anger. I would suggest, if you have an autistic son, you find some other organization than BSA.

 

Its very rewarding to have young adults greet me on the street and thank me for my volunteer efforts in scouting. The same applies to parents who are likewise grateful for what I have tried to do for their kids. I only wish I could find scouters I could say the same about when it comes to my autistic son.

 

I think the worst salt in the wound is the disabilities merit badge. Is anybody in scouting really aware of disabilities they can't see? Worst, I really don't think any are interested. Draw a picture of a wheel chair, get a badge.

 

I am also a coach in special olympics. My daughter's girl scout troop wants to help. I have suggested service opportunities to my troop at round tables, district camps, etc. Want to hear the sound of silence? Try it some time. At best, you might get a suggestion to join a special needs troop so other scouts and scouters don't have to see them.

 

[Bob White]

AhoyDave

In another thread you disagreed with me on the eligibility of someone with Autism to use the optional advancement programs available through the BSA because as you wrote..." Autism is not physical nor retardation."

 

As I am not a parent of an autistic child I will not disagree with you. However, I will allow the Autism Society of America to disagree with you. According to them "Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills"

 

AND

 

"it is generally accepted that it is caused by abnormalities in brain structure or function.

 

Abnormalities in the brain function or structing Dave, That would seem to fit both the long term disability requirements for the optional advancememnt programs of the BSA.

 

To try and argue that the BSA is unfair to your son because due to his condition he cannot meet the existing requirements BUT then say he cannot use the optional programs because he has no special needs is illogical.

 

To say that the BSA has done nothing to help these scouts is UNTRUE. They have developed optional advancement programs, created training and information regarding scouting for youthe with diabilities, they encourage leaders to welcome disabled youth and adults in to the program.

 

I am sorry your son has this disablitity, and I am sure that he faces challenges every day because of it. While there may be some people and some organizations that fail to recognize his abilities or make him unwelcome because of them, the BSA is not one of those organizations. I believe you are not able to see that due to your general and understadable anger you are exhibiting.

 

It is unfortunate that you did not seek to learn more about the options available to your son earlier in his scouting career, and that the scouters in your local community did not do a better job of realizing your needs and helping your son with the BSA resources that were available.

 

But the errors of the local volunteer scouters was not caused by lack of resources or information available to you or them through the BSA.

(This message has been edited by Bob White)

[Beavah]

Yah, hmmmm....

 

BobWhite, I think you're quotin' resources without understandin' them. That's pretty easy to do, eh? I suppose it's a good illustration of da kinds of things that made Ahoydave angry with us BSA volunteers.

 

Autism Spectrum disabilities are epidemic, eh? A large number of units are goin' to run into trying to provide services for these lads. One out of 150 boys diagnosed!

 

Ultimately, success or failure in supportin' any differently-abled boy in Scouting depends on the care, ability, and resources of each unit. Ahoydave, I expect we're all truly sorry and disappointed your son had a relatively poor experience with scouting. There really are other unit where autistic lads succeed and thrive. Each troop, though, is only as capable as da people in it.

 

I think there's room for da BSA to do a lot more by way of providin' support to units that are trying to accommodate such lads. Generic pamphlets on scouts with disabilities and an alternate advancement path are little more than token efforts. What units need are generally specific guidance and resources directed at each type of disability. But ultimately it just depends on the local volunteers. I feel your disappointment, but don't paint us with too broad a brush, eh?

 

Tagguy, I'd echo infoscouter's and Fire's suggestions, eh?

 

* Meet with the parents. Talk openly and frankly about the boy's behaviors and needs and how to manage 'em. Be especially alert for suggestions that an autistic boy can become violent/throw tantrums/etc. Those lads take more work than the kids who just tend to withdraw when they feel overwhelmed (though the "withdraw" lads can wander off...)

 

* Meet with someone who knows about workin' with autistic kids. Often the parents can recommend someone who might even know that kid. Get tips, suggestions.

 

* Have someone medically savvy in your unit review the boy's meds and brief the scouters. Some autistic meds are pretty strong, and can have withdrawal symptoms if a boy misses a dose or two; others might "knock a kid out" and should always be taken shortly before bed, etc.

 

* Meet with your PLC and all of the boys in the new scout's patrol. What FireKat described I think is da most important thing for autistic lads - havin' fellow boys who include him and look out for him. The key to that is makin' sure the boys understand autism and how to work with the fellow. If they know that an autistic or Asperger's boy can't process "social cues" like their body language and tone of voice, they won't get upset when he seems to "act like a jerk." They'll consider it a sort of challenge to work with him instead. If they know the lad is likely to get fixated on some things, they'll be alert for it and will help redirect him. They can help with reminders about medications. Make your scouts full partners in the effort!

 

* Don't hesitate to say "no" to a particular trip when yeh don't think you can manage a lad safely, but work with the parents ahead of time on it and then work with the boy to make the next trip great.

 

IMO many Autism Spectrum kids won't necessarily need requirement substitutions. They tend to be really bright, eh? And as someone mentioned, their level of focus often lets 'em hike other boys into the ground. But yeh might find some pronounced fears of certain things (water, etc.) which may merit a substitution. Best to chat with the parents, then hold your judgment until you've had some experience with the lad. But if you're in a Council where da council advancement folks don't "get it", yeh might choose to start da paperwork early even if yeh don't use it in the end.

 

I think every unit has to be honest with itself and with da family about what its real capability is to serve any given child. Better to tell a family up front that yeh don't have the skills to provide a successful Scoutin' experience and to steer 'em to another troop than to make a lad go through what Ahoydave's did, eh? Or to get a lad hurt.

 

Beavah

(This message has been edited by Beavah)

[Ahoydave]

Beavah, you're pretty much right on. As for what constitutes challenging kids, I would not put autism is a problem unless the problem is created by mishandling. Like other challenged kids, their misbehaviors are a result of fear stemming from lack of communication.

In my experience, the kids with emotional issues resulting from disfunctional families are one serious problem and another are those who are very smart but seemingly without a moral compass are the worst. The latter are generally smarter than most adults, know it, and get away with unbelievable things. The duped adults tend to favor these kids as they have been manipulated. They often are favored for leadership positions.

Bob, as for understanding autism, simplified statements of its nature are not complete enough to use as some reference. Everybody has differences in physical structures within the brain. I tend to see it more of a problem in the temporal cortex but some research suggests the linkage structure between hemispheres. Its the programming that allows adaptation. How that programming may have been damaged in early development and the chemistry involved will glaze over the eyes of most people. I have extensively studied a great many theories about its causes and functional characteristics as I am engineer and scientist with a very strong interest in the subject. I understand the chemistry and process involved more than most physicians. In my experience and training in special olympics, I have a pretty good grasp of the differences with various mental challenges as well.

[Bob White]

I agree that the problem is at the local level. Dave seems hell bent to blame the national council for reasons that neither he or beavah make very clear.

 

The randon blame on others is emotional not logical. Bith for instance sight scouters like me as the problem, yet neither have had the courtesy or the interest to even ask me if I have had any experience with scouts with special nees or what those experiences were.

 

I posted not my opinions but the contents of the National Autism Society and they are both arguing with "my view" when they should be contacting the NAS if they don't like what the site says.

 

Dave's opinion is limited by his anger, and facts of the BSA's continuing efforts to help support and serve scouts with special needs are ignored.

 

Beavah would jump in on any discussion whether he has an ionterest of knowledge in it just to have the opportunity to argue.

 

Whatever the specific cause of Autism is is irrelevant to the scouts eligibility for optional advancement tracks. If the scout is incapable of completing the standard requirements due to a permanent condition he is eligible to apply for an optional advancement plam.

 

If the scout is able to meet the requirements but needs special assistance or guideance and he is not getting that from his unit or unit leader...CHANGE UNITS!

 

Not all volunteers have the skills to deal with "normal" kids, so do not expect that there will be ample volunteers in any unit to be able to work effectively with a special needs youth.

 

Dave you chose not to be a scout leader for your son...YOU CHOSE...no one kept you out, if you could not seek or obtain cooperation from the local unit leader that is not the BSA's fault. They do not own the unit, the leader works for the charter organization not the BSA. The BSA makes all kinds of information and suport available but it is up to the leaders and parents to make use of it. Not all families of special needs scouts share in your negative experience, and not all leaders are as unskilled in helping and serving special needs youth as the leaders in your community evidently are.

 

I wish things had gone differently for you son. I wish you could see where the problem really occurred.

 

 

 

 

 

 

[bkale]

Ok.. my background. My son (7 years old) has Apert's syndrome. Premature fusion of bones in the skull and was born without fingers and toes. He has since had "man-made" fingers created (4 per hand) and a couple of "supertoes" to allow him to walk. This also required him to have surgery on his skull at age 6 months. Complete reconstruction.

 

Apert's children look VERY different and deal with things VERY differently. Most people assume he has Downs without giving him a chance.

 

Okay.. enough background...

 

BSA is a national organization that has worked with millions of boys. I was a Scout as a boy and to tell you the truth I have NO recollection of any boy with any disability (physical, mental, or behavioral) ever coming across my path back then. Scouts chugged along for almost a hundred years dealing with "normal" boys.

 

In the past, before, what, 10 years ago, most children have had little to no chance to be involved with other boys unlike them and try to stretch into new worlds and experience what Scouting has to offer. Disabilities were in the closet and it was a huge deal. But Scouting was like the rest of society and just tried to take the boys that were involved into greater levels of character building.

 

Times have changed. But that change can not recreate an organization of the BSA size overnight. Add to the fact that the "ground troops" that work in the organization are volunteers and now you are dealing with cultural and social speed (glaciers move faster).

 

I am a Scout leader. I am constantly amazed at the amount of inclusion that my boys extend to my son and a couple others that are in my Pack. They are friends, encouragers, helpers, cheerleaders, supporters, and teammates. I can't tell you how many times I have seen my son frustrated to no end with what he just can't do... and start to close in on himself and disengage.. and then a couple (not always the same ones either) of the boys from the Den/Pack will go over and get him back on track, help, give him words of praise, and cheer his effort/success.

 

We have at least 2 Autistic boys in our Pack. Is Scouting especially "geared" to them? No.. it is not. Are there pre-setup alternate programs that are in the manuals and in the mainstream? Little without parent involvement and leader investigation/work. Is Scouting there to give the framework for incredibly touching moments, friendship, growth, and boys being greater than themselves?... YES IT IS!

 

I am incredibly sorry for the frustration of parents with children that are what the world views as different. I am one of those parents... but I am actually a little angry that so often we will blame the BSA. Do we think that BSA is not looking at this and trying to come up with a way to enable Scoting to include ALL boys? We just can't assume that it will be fast and all encompassing. BSA is just like any government agency or large business... things like this take time and will be studied, tested, and documented. There will be great attention to not derailing the scouting movement with a bad policy change that the press and public can decry.

 

These battles are rooted in how we, on the front lines, deal with them. Leaders without experience with any special needs children will struggle to include.. not because they don't want to.. but because they may just not know what to do. Does the BSA need to require training in handling disabilities? Maybe they do but already has a hard time getting 100% trained persons in positions. They already provide numerous training opportunities for those that look for them. Most times the leaders are leading 6, 10, 30, 100 boys... pretty maxed out and do not have the extra time/energy to add yet another program or 100% attention to one boy that may be required, especially if it is foreign to them. Is this a failing of BSA? No. This is the need for more volunteers to step up.

 

Scouting does not have the silver bullet for all boys. It does, however, have a time honored tradition of challenging boys and trying to provide them a chance to excell in whatever way they want to go.

 

Saying BSA is excluding non-mainstream boys is easy to say... but isn't it better to step in and teach others more of what we know? Isn't that the Scout way?

[Beavah]

Saying BSA is excluding non-mainstream boys is easy to say... but isn't it better to step in and teach others more of what we know?

 

So with that in mind, perhaps we can shift back to suggestions and ideas for tagguy?

 

B

[OldGreyEagle]

Well, it appears that tagguy had two responses on the day he first posted, and that was January 19, 2008. He hasn't revisited this thread so I don't know if the first two responses gave him the information he needed, but he has posted in other threads since then.

 

The troop I serve has a long history of working with disabled youth. from the recently aged out Eagle with MS to the youth with MS from Russia and Aspergers patients as well. On another front, at one time we had so many youth on Ritalin we figured it would be better to mix it with the bug juice to help the adults as well.

 

The key is finding the right troop. Now, I admit, I am in a special troop. But not a special needs troop. Our Committee Chair is a Pediatrician and she thinks the world of the BSA program. She feels it is just the place for her patients with MS, Auspergers, ADHD and a few others as well. My son is 24, and came through the troop, he is dyslexic, ADHD and has to urinate through a stoma on his abdomen and wear a urinary drainage bag at night (but then again, he never has to get up to answer a nature call)

 

Youth find a place in our troop because we have adults who are committed to making a place for them. its not always easy to be referred to as the retard troop because we have two kids in walkers and a few others that have a tendency to act out in almost any situation, but the kids know we form a community where they can be themselves. The normal (such as they are, who is, or what is normal anyway?) kids have some issues at times adjusting to the behavior, but we see it as learning to adopt to those different from you, a skill required in adult life that isnt all that easy to appreciate, unless you need it. All youth are welcomed into the unit and we will work with any youth (and here comes the big but) as long as the youth's parents are willingly to work with us. We have some skill sets in the troop that are unique, the pediatrician, the Physicians Assistant and a couple of RN's, but the parents have to help as well. Together we form a partnership to give the boy the best experience possible.

 

Unfortunately we recently had a failure. An Asperger's boy was asked to leave the troop because he couldnt control his violent outbursts and was putting others at risk. The second time it happened was the last time he was allowed on a trip. We have a responsibility to the others boys as well. It was a tough decision, but he could not be trusted not to act up.

 

I wouldnt say the BSA program is at fault as much as it takes a special blend of volunteers to make a good scouting experience for a youth. It may be said any scouting unit is a mix of special people, and I do not dispute that, but it does take knowledgeable and willign people to work together and they can be found, but may be looked for. (yes, I know my sentence structure is poor, but it says it)(This message has been edited by OldGreyeagle)

[Gunny2862]

OGE nailed it, again.

"The key is finding the right troop."

 

There are many Troops in our town, at this time, ours is just trying to get on track. Understaffed by parents, boys not knowing what youth led looks like - but heading the right way now. The added complexity of "some"(more severe cases) special needs youth could easily overwhelm our efforts to re-work this Troop.

 

When we get going, on the other hand, the Scouts I have now seem to be very capable of understanding that others may not relate to the world or be able to do all of the activities we try to do in the same ways. We might grow into a Troop that would be great for Special needs Scouts - we just aren't there yet.

 

Also it might be considered a little much, that the Scoutmaster in addition to their 40/40+ hour paying job(and possibly it's continuing educational requirements), + getting "Trained", + supplemental training, + ongoing training issues that raise the bar(although it may be a good thing) i.e. WFA, a suggestion today that BSA lifeguard isn't enough we need BSA Swiftwater now..., plus maintaining any/all certifications... is being asked to essential understand and effectively respond to a variety of (often)psychologically based issues where a basic B.S. degree majoring in Psychology isn't enough information to properly deal with these Scouts.

 

If one isn't a Psychology professional, specializing in childhood disorders one may tend to be reliant on the parent for their education to work with someone's child. Could it be that some parents expect others to understand their child's issues at a level that is equal to or even beyond their own "school of hard knocks" understanding the parent themselves has because they have daily dealt with their child over a long period of exposure?

 

Please, Take the time to talk it over early, communicate successes and shortcomings, help the Troop you have joined as a whole understand your situation... while in the situation; carping/complaining afterwards isn't communicating.

 

Scoutmaster and Parent of a fairly mildly ADD/ADHD youth.(Also currently successfully off meds. Yea!) Who is currently PL and acting QM while the QM is traveling overseas.

[Ahoydave]

This not about finger pointing but what can be done to improve scouting. BSA is an organization of people and there is certainly an attitude of perfection as demontrated by the defensiveness. The idea that the program might use updating expectedly confronts traditionalists and elicits a blame anyone but the program. The program has no malice. Blaming it is pretty much a waste of time. It is a program that should be growing and adapting or it suffers.

There are kids that help the disabled a great deal but there are many who don't. The reasons they don't can vary. I suspect in many cases, its adult influence. At best, BSA offers ways to seperate special kids though special needs troops and offers modified acheivement requirements with accompanying mass of documentation and committee approvals. The effort pales in comparison to the PR from pictures of kids in wheel chairs being helped down a trail. The problem is that special kids are included and become part of the troop only if others step up. In leader training, no time is spent on how to accomodate special needs kids but instead lessons on how to be firm with their parents about how they may be too disruptive and interfere with the troop operation. You would think they could at least recognise scouts and maybe scouters they rise to the occasion. BSA has the recruiter patch for those that get their friends to join. On balance, the BSA seems to tolorate special needs kids only within limits and does nothing to promote their inclusion.

It's too late for my son. the latest crop of kids and adults in his troop are not of a mind set to reach out and there is no incentive in BSA to do so. I had pictured myself being involved for years to come but I've lost my incentive.

 

 

[Gunny2862]

Ahoydave, at the risk of repeating myself and others...not every troop is a fit for every Scout.

 

Go forth and find the right Troop.

 

You are castigating BSA and many Troops that might be open to the ideas you espouse:( , instead of helping by opening doors in places that might be willing to open them.

 

If your current Troop isn't willing to work in this area (for whatever reason, ideologically or otherwise) shop around until you find one that is.

Start a Troop.

But don't just quit and blame other hardworking volunteers, who may just be doing all they can.

 

[mmhardy]

I see this topic come up from time to time and it gets my blood boiling.

 

First I have been around developmentally disabled people my entire 47 years. I have seen the changes that have evolved in this country from the institutional system in place in the 1960s to the other end of the spectrum that exists today mainstream everyone. (Thats another topic)

 

Being a father of an autistic son, a Second Class Scout, is a challenge. However its my job to make the best of the situation. He is in the same troop with his older brothers but has the tendency as, those with Asperger syndrome do, to be reclusive and fixated on a limited number of activities. I do not expect my troop to make any accommodations other then to be aware of his disability and ask me questions. Thats my job!

 

Fortunately our current troop works out however Im open to exploring finding or creating a troop for other like minded boys! In corporate terms, the BSA is a turn-key youth program. It has all the trappings and trinkets to keep the youth and the adults engaged and its malleable enough to make accommodations without breaking. Just add motivated adults and kids and it works!