Misunderstanding and Discriminatory Labels

This post does not reflect the usual interaction our special needs youth normally have with Scouting.  I share this as an example of how we still have work to do to in communities at large so individuals with Autism can be understood and helped to flourish

Our Boy Scout Troop recently returned from their annual week-long campout.  Things did not go well.

A cautionary tale about misunderstanding youth with special needs–

Some background:

A couple of years ago my third oldest son–Lawboy and a friend’s son who also has autism (we’ll call him Goodfriend) went to the backwoods program offered by our council.  They get along well and balance each other out.  Knowing they would be separate from the Troop, I talked to the leader in charge ahead of time about our boys and their needs.  We also provided contact numbers and emails so we could be reached as well as a lockbox with their daily medications.  The backwoods leader had worked with youth for a number of years and had exposure with ranges of autism.

There was one day Goodfriend got really frustrated and he was pacing in the woods breaking sticks.  The Leader called my friend to confirm how to proceed.  She told him to let Goodfriend work it out with what’s he was already doing, and he (Goodfriend) would rejoin the group when he was ready.  It was the only time she needed to be contacted.  Lawboy and Goodfriend had a really great experience and earned tons of merit badges.

Since that time, Goodfriend has gone on to earn his Eagle Scout award.  He did a conservation project and Lawboy is looking to do something similar.  I had the privilege on sitting in on Goodfriend’s Eagle Board.  His different way of thinking was evident, but in no way any hindrance.  He told us how he believed it was possible to be a leader even without being in an official leadership position.  You can lead through your actions and influence.  You can be kind and use good language.  The people who know and respect Goodfriend have cleaned up their language around him because he keeps up his standards.  He is kind.

This doesn’t mean he doesn’t get frustrated.  He does.  But Goodfriend is overwhelmingly positive and he generally gets along with everyone.  He has learned through the years to walk away from stressful situations and re-engage when he is calm.  He uses stress balls or will break sticks to work out his excess energy/frustration.  He’s a good kid (and a big kid who enjoys football) with a big heart.

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What happened

This account has been put together from my conversations with multiple people who were there, saw what happened, knew the people involved and their amount of training.

This year Goodfriend didn’t need to go to scout camp, but he really enjoys the outdoors and wanted to go back to the backwoods program again.

Unbeknownst to all of us the leadership had changed.

This new leader has little to none experience dealing with kids in the autism spectrum.

It was a very small group of boys, but that didn’t stop problems from occurring.  One of the boys there dared Goodfriend to pick up a hot coal–which he did.  No punishment was given out to that boy.  But because Goodfriend is big and loud and had an inability to completely express himself verbally when he is highly frustrated, he was misunderstood as being dangerous and a threat.

Instead of contacting Goodfriend’s mother for any advice (despite the fact he was given every form of contact information possible for her), he opted to call the big whigs at camp and labeled Goodfriend as a threat.  This could’ve been prevented if he had listened to Goodfriend before his frustration grew, if he had called or texted his mother for advice.  It could have been prevented if the leader had received autism training and had any idea of how to read the signs or what to do to head off a meltdown or been taught ideas on how to deal with a meltdown.

Goodfriend ended up being moved back to the regular camp, but the problems didn’t end there.  The camp counselors and leaders had all labeled Goodfriend as a potential threat and were watching him like a hawk and were all-over him for everything.  He was getting increasingly frustrated because he wasn’t being left alone to disengage, calm down and then re-engage.  Goodfriend played a game and was tripped (accidentally), however he perceived it as intentional and tripped the kid in return.  (His wrong–we all acknowledge that).  He also yelled something in exasperation, but doesn’t recall actually yelling.

Goodfriend was asked to leave the game.  He started to do so, but then was called back to talk to one of the counselors.  He complied.  (Even though he really wanted to just go back to camp).  The counselor talked at him and didn’t want to listen to anything Goodfriend wanted to say.  (The counselor did not see the initially tripping, only Goodfriend’s reaction to the tripping).  At one point he there was picked up a stick to break in frustration.  He was told to put down the stick–which he did.  Goodfriend then picked a rock to squeeze, and was told to put that down.  He did.  Then he picked up some blades of grass to shred and was told to put them down at which point he asked in frustration, “what do you think I’m going to do with a blade of grass?”

He was compliant to each counselor request.  His frustration was evident and misinterpreted as a bad and aggressive attitude.  Our troop leaders were called in.  They tried to talk to him for over half an hour.  Our Troop Leader can usually talk Goodfriend down, but had no luck.  Goodfriend expressed frustration no one would listen to him like our Troop leader, but eventually asked Troop Leader and Assistant Troop Leader to just leave him alone.  He took a nap and was fine by all accounts afterwards.

During Goodfriend’s nap, before he had calmed down, his mother was called.  She was understandably upset she hadn’t been called sooner before things had escalated by either the original backwoods leader or our Troop leaders.  Goodfriend’s mother expressed she felt everyone, including troop leaders, were not interested in keeping Goodfriend there.  She decided to come get him.  There was additional miscommunication about the time of her arrival, and when she got there Goodfriend (who had completed his nap and woke up happy) was surprised to see his mother at camp.  He hadn’t been informed he was leaving.  (The Troop leaders tell me they thought they had a few more hours and didn’t want to upset him too early).

I’ve heard multiple sides of the story and I think our Troop and council can benefit from guidelines and training.  Guidelines which could be tailored to a specific boy could help keep communication open because a “one-size fits all” solution would not work.  Every child on the Autism Spectrum is unique with his or her own difficulties.  He or she will react differently to situations and stimuli.  Some children may need weight/compression/firm hugs, while in a different child, that would make the situation worse.  (It would make Whirlwind more upset to be hugged or restricted in any way).

I’ve been thinking of how we might improve things.  By no means have I come up with anything comprehensive, but here are some of my suggestions.

Possible questions to ask parents of special needs kids before camp:

1. When your child becomes frustrated, what is the best way to diffuse his frustration before it reaches critical status?
2. Do you prefer your child change locations (under two-deep leadership guidelines) to a quieter area (away from stimuli or other Scouters)?
3. Will the presence of other youth mitigate or exacerbate things? (I know one child who would escalate things to get a bigger reaction from everyone–he does better when there is no “audience”.  Another child worries about being embarrassed.  When and if he feels embarrassed, it is even harder to get him to re-engage).
4. If your child reaches meltdown phase, what is the best immediate course of action?

Additional Ideas to avoid misunderstandings (found at Indiana University)

For the full list and article, go to the IU website.

1.  Behavior can be a form of communication, particularly for those whose skills in communication are greatly impacted. To determine a pattern, pay attention to what occurs right before and immediately after a behavior. If you are stumped, ask other parents and professionals what might be the underlying cause(s) of behaviors.
2. Every individual is different, so it’s important to be mindful of sensory input in the individual’s environment. Consider the visual input (e.g. fluorescent or bright lights), auditory input (e.g. loud noises), tactile input (e.g. certain surfaces, textures, fabrics), and smell/tastes (strong perfumes or certain food textures) that may be bothering the individual with an autism spectrum disorder. If these sensory issue are not addressed, repetitive behaviors and a failure to respond to certain relevant stimuli may develop.
3. Break tasks down into smaller steps. Showing pictures of each step, modeling the task, and saying each step out loud can help facilitate learning. Set students up for success and provide rewards when goals are reached.
4. Try to keep language as simple as possible by using minimal words when making your point or providing information. Avoid the use of sarcasm and idioms, as these may be taken literally.
5. Unstructured activities and wait time can be a source of anxiety and confusion for some individuals. Specific directions and checklists of what to do during unstructured activities can be beneficial. Bringing a “wait time” activity (i.e. books, toys) can ease this anxiety.
6. Individuals on the spectrum will read our emotional level about a situation. Use a calm tone of voice and avoid physically touching the individual, even in the midst of a behavioral outburst. Excited adults yield excited children. Practice your poker face.
7. Use highly motivating reinforcers, such as fixations or fascinations, to teach a new skill or behavior. The use of surveys or sampling procedures will ensure the reinforcer is truly motivating for the learner. Be sure all staff know what skill is being reinforced, how often, and the importance of consistency.
8. For some, breaks and calming strategies should be considered as part of the daily routine. Inconsistency in schedules can cause some individuals to feel overwhelmed, so a pre-determined routine should be implemented daily. Providing breaks and calming techniques only after a problem behavior occurs may inadvertently increase the likelihood of that behavior occurring in the future. By using a respectful and proactive approach, the individual will build self-esteem and confidence, as well as reduce anxiety.
9. Uncertainty creates anxiety that increases the risk of tantrums, aggression, and meltdowns. Individuals on the autism spectrum need reassurance and information about upcoming events and changes. They may benefit from having a schedule of daily events and/or reading social stories about changes to their schedule that they are about to experience (e.g. social story about fire alarms or school assemblies). If a change is made to a plan or strategy, call parents and ask them to help prepare their child for the plan as well.

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This is going to take time and work, but I really hope if we work with everyone, we can prepare them to handle situations better and to not be so quick misunderstand or label an autistic youth as a troublemaker.

One can dream.

Update 2018–

I spoke with our district executive and relayed the story of what happened.  He agreed additional training would be a good idea for those working with special needs youth.  We had one roundtable about disabilities, and they are in the process of forming a committee who will be providing resources and training.  I don’t know how many people we really reached because turnout wasn’t great, but we’re making some progress in this area.