Autism

[HateTheUniform]

Any suggestions on how to deal with boys with autism? If you refer me to my local council, I doubt that will help. They are the most incompetent group of people I have ever worked with on a volunteer basis. Would appreciate references to direct resources if possible. Thanks(This message has been edited by HateTheUniform)

[acco40]

First I would cop the attitude. Second, see the following below from (I think) Tim Makatura and slightly modified by me.

 

Increase awareness that BSA makes special accommodations for Scouts with Autism and other cognitive/emotional disabilities. The first step in assisting Scouts with Autism is to increase awareness of what is available within the BSA. It is best to provide this information during recruitment.

 

Clarify/Verify the diagnosis. In order to qualify for alternative requirements, a diagnosis MUST be made by a Psychiatrist, Psychologist, Pediatrician, Family Physician or Neurologist. This diagnosis helps to clarify the disorder but also helps to rule out other causes for the behavior. This diagnosis provides a name for the particular disability and the diagnostic report, which the Scout leader should have the opportunity to review, may also include general information about the disability, a behavioral description and recommendations for treatment.

 

Talk with the parents/guardians regarding services provided in the home and school. Most of the activities in Scouting tend to be educational/social and it is important to create the most effective environment for these activities. Since schools and parents provide the childs learning environment, it is important to identify any special services or accommodations that are being provided in the home or classroom environment. These services should be considered when structuring the den or troop activity.

 

Find out about the particular disability. There are a number of resources to find out about any disability through the National Institute of Health, local agencies, hospitals and support groups. A brief review Autism is provided below:

 

Autism is a brain disorder that typically affects a person's ability to communicate, form relationships with others, and respond appropriately to the environment. Some people with autism have average speech and intellectual skills while other are mentally retarded, mute, or have serious language delays. For some, autism makes them seem closed off and shut down; others seem locked into repetitive behaviors and rigid thinking patterns. Persons with autism do not have exactly the same symptoms and deficits but they tend to experience problems in the area of social-interactive skills, communication, motor and sensory skills. There are also repetitive and obsessional styles of behavior that are associated with autism. Most children with autism seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. This problem may become evident even in the first few months of life when the child does not interact or may avoid eye contact. There is also difficulty in interpreting facial expression or gestures.

(American Psychiatric Association, 2000)

 

Find out about the specific disability. Learning about a specific disability like Autism is beneficial, however, there may be significant differences between individuals with the same diagnosis. Therefore, it is important to find out specific information about the cognitive/emotional condition from the parents. With their permission, it is also beneficial to get specifics about the individuals behavior from teachers, therapeutic workers and guidance counselors.

 

From this information, you should be able to determine inappropriate behaviors as well as triggers for these behaviors. Find out what is being done in the home and in school to address these behaviors. Solicit suggestions from parents and professionals regarding methods to work effectively with the Scout.

 

Initiate accommodations in the troop meetings and outings. There are a number of ways to develop and carry out accommodations for Scouts with cognitive disabilities. Here are a number of suggestions.

 

Approach every meeting and outing with a positive attitude (and lose your cynicism)

 

Insure the safety of the all Scouts. It is best to have the parent attend meetings with the Scout and provide supervision and/or interventions during the Scout meeting. The Scout leader may then decide when that supervision can be lessened or withdrawn.

 

The parent and Scout leader should determine rules of behavior and consequences for inappropriate behavior in advance. They should also determine if any accommodations should be made for the tasks addressed in the meeting

 

The Scout leader should review with the group of boys what is expected from them when inappropriate behavior occurs

 

The Scout leader should inform the parent of the activity a few days in advance so that the child may be better prepared for the activity.

 

The Scout with a cognitive/emotional disability may need some special accommodations or strategies to help them learn. Many of these accommodations and strategies are simply good teaching methods and are listed below (www.boyscouts-marin.org)

 

Suggested Teaching Strategies

 

Tell the Scouts in advance what they will learn

 

Provide a combination of visual, written and oral instructions since these help the Scout to focus and remember the key parts of a learning activity.

 

Repeat instructions often

 

Break large tasks into a set of smaller tasks or steps and monitor for completion of each step Make a written list of these steps and allow the Scout to cross off each step as it is completed. This method may also be used for any number of tasks.

 

Work on one step at a time.

 

Allow for extra time for some Scouts to compete certain steps

 

Have different (and adjustable) activities for faster and slower learners

 

Try to provide a quiet area with limited distractions.

 

Create a routine and expectations for each meeting.

 

Plan short breaks

 

Provide an area or time where the Scouts can move around and release excess energy.

 

Establish a clearly defined and posted system of rules and consequences for behavior.

 

A card or a picture may serve as a visual reminder to use the right behavior, like raising a hand instead of shouting out, or staying in a seat instead of wandering around the room.

 

Accept and praise each boys best effort in keeping with the Scout Oath. Never make comparisons.

 

Help everyone to understand that while fair means giving everyone what he need, it is not necessarily equal. (Weinstein, 1994)

 

 

What Not to Do

 

 

(Experts suggest that if a person with a cognitive/emotional disability could get away from their disability for just a few minutes and write a note to let others how to best deal with their behavior, the note would probably be something like this)

 

Dont Spoil Me. I know I should not get all I ask for. I am only testing you.

 

Dont be afraid to be firm with me. I prefer to know where I stand.

 

Dont use force with me. It teaches me that power is all that counts. I respond better to examples of what I should do.

 

Dont be inconsistent. Youll just confuse me and make me try harder to get away with anything I can.

 

Dont make promises you cant keep. I will learn not to trust you.

 

Dont let me provoke you. If I say or do things to upset you, dont blow up or I may do it again. I dont mean it. I just want you to feel sorry for me.

 

Dont me feel smaller than I am. Ill just make up for it by acting like a big shot.

 

Dont do things for me that I can do myself. This only makes me more dependent.

 

Dont give my bad habits a lot of attention. This only encourages me to keep showing these to you.

 

Dont correct me in front of others. It is better to correct me quietly and in private.

 

Don't discuss my behavior in the heat of conflict. I don't hear or cooperate well at this time. Do what needs to be done, but save the words for later.

 

Don't preach to me. You'd be surprised how well I already know what's right and wrong.

 

Adapted from (Sloan, 2000)

 

Review modification of requirements for membership and advancement. The following are the guidelines for membership and advancement in Scouting for persons having disabilities or other special needs. (www.boyscouts-marin)

 

The Boys Scouts of America follow the definition of disability that is presented in the American with Disabilities Act (ADA) of 1990. It states that:

 

"An individual is considered to have a 'disability' if s/he has a physical or mental impairment that substantially limits one or more major life activities (e.g., . . . seeing hearing, speaking, walking, breathing, performing manual tasks, learning, caring for oneself, and working), has a record of such impairment, or is regarded as having such an impairment. (www.usdoj.gov).

 

This definition includes individuals with severe and chronic mental or physical conditions. The ADA also protects individuals who have a record of disability but have recovered or shown significant progress.

 

Membership requirements may be adapted to meet the needs of the Scout. The chartered organization, with approval from appropriate medical authorities, may allow a youth member to register (based on the above definitions) beyond the normal registration age. The Unit leader (i.e. Cubmaster, Scoutmaster, etc.) must certify the approval of the charter organization for the person to register and the local council must also approve this registration. These situations are decided on an individual basis. The medical condition of all candidates for membership beyond the normal registration age must be certified by a physician licensed to practice medicine, or an evaluation statement must be certified by an educational administrator. Any corrective measures, restrictions, limitations, or abnormalities must be noted. In the case of mentally retarded or emotionally disturbed candidates for membership, their condition must be certified by a licensed psychologist or psychiatrist. Current health, medical, or certification records of all youth members beyond the normal registration age who have disabilities are to be retained in the Unit file at the council service center (www.scouting.org).

 

 

[johndaigler]

First HTU, WELCOME!!

 

Second, Be Prepared for some serious comments about your moniker - FYI, there will likely be a large amount of underappreciation!!!

 

Third, your Council/District guys probably have answered this question before, so even if you don't appreciate them, go there for possible support. I hope you've already discussed this with the boys' parents, and maybe even doctors. The boy's school is another great source of info about this particular boy.

 

Autism is not a single thing or single set of circumstances for a child. You can "google" it and come up with many sites and resources that will help you gain background info and very useful knowledge, but this particular Scout probably won't fit any one general category. Autistic kids who function well enough to be Scouts often have a combination of various issues and symptoms. After you've got a good generic background about autism, you'll need to focus on the specifics of this Scout. Chances are you'll need to think of it more as his own "uniqueness" rather than bother with medical terms.

 

Good luck!! Don't hesitate to come back when your questions get more specific.

 

jd

 

ACCO - I started my reply before you posted yours but now that I've seen yours, I just wanted to say THANKS!! I didn't know how to get all that into my post without depersonalizing it to the point of it feeling like a lecture to HTU. GREAT POST!!!!!!! HTU, read it, then read it again, then in a week come back and read it again --- there's GOBS of great thinking in there from ACCO and his source.

(This message has been edited by johndaigler)

[packsaddle]

I second johndaigler's post. Acco gave an excellent reponse. I add that you may find additional resources in your local community. Look for the local NAMI (National Alliance for the Mentally Ill) group. They will have both personal experience as well as literature and references to help. For autism, as in all aspects of leading young people, patience is indeed a virtue. Good luck.

[acco40]

Thanks for the kudos but most of the "thoughts" were from others. I just acted as an editor.

 

Now, about the uniform IHU. Regardless of what you feel about the cloth itself, you must love what the uniform represents. I know I do. In fact, after our weekend campout two days ago I was driving home. At our reflection at the end of the outing I noticed that only four out of eleven boys were dressed in their field uniform. Those who were not in their field uniform were not in their activity uniform either. I reiterated our troop expectation that we travel to and from outings in our field uniform and why. I was carrying four Scouts in my van and was rushing (but obeying the speed limit of course) home so that one of the Scouts could make his afternoon hockey game on time. When exiting the highway I came upon a red light at the intersection to a rural road. No cars to my right and two cars to my left, some distance away so after slowing down I made a right turn on red. Well, one of the cars was a county policeman and he pulled up behind me turned on his lights and I pulled over. He asked if I knew why I was being pulled over and I told him yes, I "ran" the red light. He asked me where I was going (why do the police always ask that now?) and I told him I was trying to get on of the boys home on time for his hockey game. I firmly believe he noticed the Scoutmaster position patch on my shirt, my full uniform and the four 12 - 14 year old boys and decided to just give me a warning. Grateful, as I pulled away, I told the boys that the only reason I did not receive a ticket was because of the uniform I was wearing. It was not because of me, but because of what the uniform represented. Not a proud moment on my part but that will become my SM minute this week.

[HateTheUniform]

Thanks for the quick replies to this. Sorry my attitude is such a concern to some but this is how I cope. If it offends, my apologies.

[encourager]

Hi HTU, my son is a high-functioning autistic who is doing very well in scouting. Thanks to scouting he has learned leadership skills with younger members and even Cubs. He is currently working in our council's Scout Shop. He's turning 18 next April and since he should be making Star at the next court of honor, I'm apply for alternative merit badges and hopefully he can go on to Eagle. He started in Scouting at 14 and has learned a lot. Sometimes, I think you just have to go with the flow and see what the lad is capable of. Given the many opportunities that Scouting provides, your Scout may come out better than when he went in. Keep us posted. BTW, the Autism spectrum is supposed to afflict 1 in about 300 kids. My kid is high-functioning but maybe your guy is not--just keep the opportunities coming.

 

YIS, Sylvia

[HateTheUniform]

Sylvia:

 

Thanks for your message and good to hear the program has been of value to your son.

 

For the record, my den has 2 boys with autism and it manifests itself very differently in each boy. One boy, while pleasant and sweet, is more disconnected to his environment so the challenge with him is getting his attention. The other boy is pretty aware of what's going on but acts pretty aggressively. In both cases, the fathers are there so that is helpful. What is challenging is the frustration the other parents are feeling. Basically, they feel like their sons' cub scouting experience has been reduced to a special ed program. While we have a good size den and great parental involvement overall, there is a tension here. I do what I can to challenge all the boys (even the normal ones are not easy to manage including my high achiever son!) but the 2 autistic boys have a disproportionate impact on the order and flow of den meetings.

 

I guess what I need to understand is how other den leaders of cubs have dealt with this type of issue -- from the perspective of the kids and the parents.

 

This forum is remarkable and I appreciate everyone's contributions. Thanks all.(This message has been edited by HateTheUniform)

[cajuncody]

Hi, welcome to the group.

I don't have any experience with special needs in my den but we did have a boy in my sons class last year. Here is my suggestion.

 

If the boys with autisim do better at the begining of a meeting I would have them come later to the meeting so that they are still fresh at the end. I would also have them stay later to have a little one on one time with them and their parents to cover what they missed at the begining. This would give them group time but also a more personalized portion too. If they do better latter in a meeting I would switch it around and have them arrive early. I would also suggest the "talking feather " method so that everyone knows whose turn it is to speak out. This could be helpful in keeping the entire group focused on one person rather than watching each other.

Remember, these are just my opinions, I have no training on this subject.

Cajun

[torribug]

I would highly recommend getting a den chief (or two, but that would probably be pushing your luck) to help work with the den, or even predominantly with the special-needs boy (as long as he gets to do what he's supposed to do throughout the course of his tenure as Den Chief). We had a special-needs boy ("Dave") in our den, and our Den Chief was a great help. He helped plan meetings, and helped out with the cubs when we (my assistant and I) had to be a bit more intensive with Dave. Other times, when we were doing crafts or something, it was easier for him to sit next to Dave and help give him some individual attention while we worked with the group as a whole.

 

Now, I'm sorry to hear that the other parents are frustrated in that they feel their kid's scouting experience has been reduced to a special ed program. I'm wondering if they are passing this feeling onto their sons. How sad if they are. This is a wonderful way for them to demonstrate compassion to their kids. Maybe some other parents can be a bit more involved with the program instead of standing back and being judgmental? Just a thought..

 

Bug

 

[OldGreyEagle]

HTU,

 

First how old are the boys?

 

I understand the frustration the parents of the "normal" kids feel. We have quite a few ADD and behavioral challenged scouts in the troop I serve, its all the influence of having a pediatrician sold on scouting as a committee chair. Having an ADD dyslexic son with a pretty unusual physical condition, I can understand the feelings.

 

Unrelated, you mentioned your name on the forum is how cope, do you wear the uniform and do the boys of the den know how you feel about it?

 

[johndaigler]

HTU -

 

I'm glad to see this is helping.

 

Just a few variations on others' thoughts . . . The Den Chief is a great idea, but maybe better used with the rest of the boys rather than the two Autistic Scouts. The dads might better play that role. You said they're both there, but not what they do. Get their fingers dirty!

 

Do you know any classroom teachers? Talk with them about "mainstreamed" special needs students and how teachers keep their classes and lessons from focusing so much on the needs of the few that the needs of

[HateTheUniform]

Bug:

 

The den chief idea is good in theory but I had one for this den last year and he only added to the management challenge, he didn't take away from it. He never came prepared and when he was there he got as wrapped up in the mischief as the younger boys do.

 

Fortunately, the parents of the autistic boys are always there. However, their management style is reactive -- that is, their boy does something inappropriate and then it gets attended to -- instead of preventive. I'm sure that is part of what they are learning as they help their sons cope with the condition.

 

Autism is tough, it really is. I'm just looking for practical experiences with this situation to help my understand whether I'm on the right track. When you get these boys focused on something and they do it, it is quite rewarding. Unfortunately, those moments are diluted by a lot of challenging experiences too.

 

Thanks for the input.

[packwife]

Hi,

Don't let the packwife fool you. The reference is to the NFL Packers, of whom I am a fan by marriage. We, too, have an Autistic/ADD child in out troop. The parents drop him off despite our requests for someone to stay with him. We have a special needs group in our area that we have directed them too but his parents feel that this is not a good group for him. He does not participate at the meetings, even after repeated instructions. At outings someone needs to be assigned to him because he wanders off. The boys are busy trying to earn their badges and can't watch him constantly. The parents think the other boys do after telling them that is not what is happening. I'm afraid that my childs scout experience is being hindered because he is expected to take care of this child at meetings and outings. I know this child has every right to a scout experience too. I don't want to hinder his either. This has been going on for about 6 months now. Thanks for any input.

[packsaddle]

Welcome packwife! I have to say that sure is a catchy moniker. I now must inform the forum that packwife is in no way related to packsaddle. Really. At least as far as I know. I could be wrong. I often am. H'mmmm.

 

Anyway, I think the parents of the boy MUST get engaged in his situation. If they are letting the troop act as aftercare they must be informed that is wrong.

If they are in denial of the problems, they must come to grips with them. The boy is worth the time and I applaud you and the troop for your patience and for doing what you can for him. But your description indicates that the boy is not getting the scouting experience. And if the parents are not supportive, you cannot be expected to take their place. Such is not fair to the troop.

If a private conversation with them doesn't resolve this, then perhaps the minister (assuming your CO is a church) could assist.

edited part: sorry, there was a typo.(This message has been edited by packsaddle)