Boys With Autism Can Thrive in ScoutingWith Help
By Elizabeth M. Johnson
Parents need to assist unit leaders in working with a Scout whose behavior is affected by one of a variety of neurobiological conditions known as autism spectrum disorders.
When C. J. Hanson told his parents that he wanted to join Cub Scouts, his mother was terrified.
"I didn't know how he could participate," Crystal Hanson said. The Huntsville, Ala., youngster has Asperger syndrome, an autism spectrum disorder characterized by difficulties with social interactions and processing sensory information; an obsessive interest in one subject to the point that nothing else is of interest; a lack of physical coordination; and a need for rigid routines.
"...he doesn't do well with loud noises, he's intimidated by new experiences, and he's not very coordinated," she explained. "He has trouble interpreting questions and following directions, and his play skills are not well developed."
Children with Asperger syndrome have trouble understanding social cues and navigating the dynamics of friendship and group play. For instance, C. J.'s mother noted that when other children play tag, her son may run around with them, but he's playing his own game and not really joining the game of tag.
In preparation for C. J. joining Pack 234, Crystal Hanson sat down with the Cubmaster and Wolf den leader and explained her son's issues and his desire to be a Cub Scout. "They were very receptive and understanding from the get-go," she recalled. "His leaders also strongly encourage C. J. to try new things, but if he doesn't feel comfortable, they never pressure him."
C.J.'s dad, Chris, has also become actively involved with his son's participation. He attends meetings, interpreting information that C. J. has trouble processing and stepping in to help defuse any situation in which C. J. may get agitated or stressed out.
On a recent pack service project of cleaning a nature trail, C. J. became paralyzed with fear at the prospect of crossing a boardwalk over wetlands. The Cubmaster was patient, showing C. J. that the boardwalk was safe, but reassuring him that he didn't have to cross if he didn't want to. He finally crossed, and ended up having a great time removing leaves from the boardwalk.
Through Cub Scouting, C. J. made strides his mother never thought possible. "He made friends for the first time in his life," she said.
"In school, C. J. played alone. He didn't have the confidence or the skills to interact with other children. He didn't know how to start up a conversation, nor did he have the same interests as the others. In Cub Scouts, he has found that all the boys are working toward the same goals and achievements. He now has a best friend who is also a Cub Scout, and they have begun discussing Scouting at school. Now that he has begun talking to this friend, he's branching out and talking and playing with other kids, too."
C. J. is also inspired by working on badge requirements in his Wolf handbook. "He doesn't stop working until he's accomplished each achievement," his mother said. "One weekend, he worked hard at balancing so he could walk on a small balance beam at the next meeting. Scouting has been very helpful for his self-confidence."
Autism on the rise
C. J. is one of a growing number of children with autism spectrum disorders, a category that includes a variety of neurobiological conditions that affect social skills, fine motor skills, sensory processing, and sometimes, language.
In addition to Asperger syndrome, sometimes also called "high-functioning" autism, the spectrum includes classic (Kanner's) autism, and pervasive developmental disorders (P.D.D.'s).
According to the Centers for Disease Control and Prevention's National Center on Birth Defects and Developmental Disabilities, two to six of every 1,000 children has an autism spectrum disorder, and 80 percent of those affected are boys.
Daniel Carroll is staff advisor for Scouting Unlimited, the National Capital Area Council committee that works with Scouts with disabilities. (The committee assists with developing accommodation plans for youth with disabilities and with determining and approving alternate rank advancement or merit badge requirements. It also provides training on accommodating youth with disabilities in the Scouting program.)
Carroll says he has experienced an increase in questions about autism, and he estimates that 15 to 20 percent of the units in his district include boys with autism spectrum disorders.
However, "there are probably a number of packs with youths who have autism that never call for help," he notes. "That's because Mom or Dad signs up to be the den leader for their child and stays with him at all times, so it doesn't become an issue. It's after a Cub Scout bridges over to Boy Scouting that I tend to get calls."
At the unit level, Carroll works with parents and adult leaders to develop an Individual Scout Achievement Plan pdf.
"This is an informal meeting where I sit down with the Scoutmaster or Cubmaster, the parents, and other adult leaders to come to an understanding of what the Scout can and cannot do," he says. "As a facilitator, I can ask questions and guide the discussion to make sure that all the information gets on the table."
Parents should take the lead
Because not every council has a professional Scouter who can facilitate such a meeting, it's important for parents to make sure that their sons' leaders know how to work with an autistic youngster.
Mary Wallan looked into Scouting as a possible social activity for her son, who has been diagnosed with P.D.D. Before signing up, she met with troop leaders and shared information about how autism affects her son and what they might expect from him.
Now 17, Joe Wallan has been active with Troop 95 in Sharon, Mass., for five years, and his mother serves on the troop committee.
Joe enjoys hiking, camping, biking, and performing community service activities with the troop. Because he attends separate special education classes and does not attend his high school's general education program, Scouting offers Joe a way to practice his social skills with non-disabled peers.
Scouting's many benefits
"Scouting has created a sense of community with other kids," Joe's mother explained. "He knows kids by sight and by name when he sees them at school or in town. Three other Scouts from our troop are in concert choir with Joe. That's another point of contact he wouldn't otherwise have."
Scouting has helped Joe with his organizational skills, an area of difficulty for many children with autism.
He has also learned how to be more independent in Boy Scouts. "Camping is a massive undertaking with lots of worries, but it also teaches him steps to independencegoing shopping, following a list, getting ready for a trip," said his mom.
While Wallan attends every Scout function with her son, she gives a lot of credit to the adult leaders for their encouragement and understanding. In particular, they have worked with the boys in the troop to encourage them to accept Joe.
"It's a learning issue for boys," said Peter Raskin, an assistant Scoutmaster with Troop 95. "Things don't always work perfectly. I may have to call a boy over and remind him to include Joe. It's a teaching moment. Part of being a Scout is helping boys who need help."
Whether through adult guidance or their own understanding of the Scout Oath, some boys forge special bonds with Scouts like Joe. They are the ones to make room for him in a tent, to work with him on advancement, or just spend a few minutes talking about school. These steps toward inclusion are very meaningful to Scouts with autism and also growth opportunities for other Scouts.
Some parents may feel reluctant to share information about their son's disability, hoping that somehow he will "fit in" with the other boys. But without knowledge of the boy's disability, leaders may be frustrated or angered by the child's seemingly irrational or anti-social behavior.
Don M., father of a first-year Webelos Scout with Asperger syndrome, understands why a parent may not want to inform leaders about a child's autism. But as a Scoutmaster of a troop in North Carolina, he knows how vital it is that the information be shared.
"The issue of 'who do you tell' can be tricky," the dad acknowledged. "As a Scoutmaster, I want to know if a boy in my unit has a disability like autism or Asperger's. But as a parent, I want to keep it private in order to protect my child. I only tell those people who need to know."
Don informed his son's den leader and Cubmaster about his son's condition and gave them coping strategies. For example, the leaders now know that the boy may not always make eye contact with them, and that it helps to break large tasks into small steps that he can follow successfully.
In Massachusetts, Mary Wallan also suggests chatting with leaders and giving them a simple list of ways their son would be helped by the troop. Troop leaders are also encouraged to work with the senior patrol leader and patrol leaders to better understand the boy's needs, even if they don't specifically identify the Scout's disability.
"Get involved to some extent. See how independent your son can get, but support the leaders," she said. "Don't just leave your son. Remember, these leaders are volunteers."
Freelance writer Elizabeth M. Johnson is a troop committee member and the mother of a son with Asperger syndrome. She lives in Lansing, Mich.
Copyright © 2006 by the Boy Scouts of America. All rights thereunder reserved; anything appearing in Scouting magazine or on its Web site may not be reprinted either wholly or in part without written permission. Because of freedom given authors, opinions may not reflect official concurrence.