MODULE L: UNDERSTANDING AUTISM
IN THIS MODULE:
- SOCIAL BEHAVIORS AND CHALLENGES OF AUTISM
- LANGUAGE ASPECTS OF AUTISM
- SENSORY DIFFICULTIES OF AUTISM
- EXECUTIVE FUNCTIONING (SELF-ORGANIZATION) LIMITATIONS
- PHYSICAL BEHAVIORS
- LOSS OF CONTROL INCIDENTS & TRIGGERS
- COMMUNICATING WITH PARENTS OF SCOUTS ON THE SPECTRUM
- COMMUNICATING WITH THE SCOUT ON THE SPECTRUM
- STRATEGIES TO HELP A SCOUT WITH AUTISM SPECTRUM DISORDER
The formal name for Autism is Autism Spectrum Disorder (ASD). It is a neurological condition
that affects how the brain operates and impacts many aspects of life. In general terms, autism affects communication and social skills, the perception of risk, the ability to self-organize, and how sensory input is managed. The differences begin showing themselves gradually in early childhood, but it may take years before being properly identified as autism.
The word “spectrum” in the name signifies how Autism manifests itself in different ways in different people. Each of the major symptom categories has variations in both severity from one person to the next and in the way the symptom in expressed (e.g. impacting primarily vision or hearing). A person’s overall level of functioning will vary depending on his or her individual combination of symptoms. Most children described as “on the spectrum” are able to participate in and benefit from Scouting programs.
Overall, in the United States 1 in 42 boys and 1 in 189 girls (CDC 2014) are diagnosed on the autism spectrum. Based on limited research and anecdotal experience, it appears that people with autism spectrum disorders are more concentrated in Scouting programs and somewhere between 1 in 15 and 1 in 20 Scouts are on the spectrum. This means most Scout units have one or more Scouts on the spectrum and all Scout leaders need some familiarity with the characteristics of autism and the strategies for making the Scouting program work for these youth.
At the time of this writing (2020), popular drama shows are depicting more characters on the autism spectrum than ever. News shows are also featuring more people with autism. However, there has been a bias to show people with ASD who are either very high functioning or have savant intellectual skills. The reality is that people with ASD vary in intelligence like everyone else. Most of them would test at average or above average IQ. But that is only part of the story. Scouts on the spectrum tend to excel in memorization tasks, but they often struggle with abstract thinking and tend to have a one-track mind. While Scouts on the spectrum can quickly solve problems like they have seen before, they struggle to solve a new problem for the first time. This impacts how you teach skills to a Scout on the spectrum.
Even though Scouts on the spectrum are different from others, in many ways they mature at a normal pace, including physical growth, sexual maturation, and many aspects of cognitive development. Scouts on the spectrum will change as they grow up. A teen on the spectrum will have many of the attributes of his or her age peers but will interact with the world in a different way.
While a Scout on the spectrum will exhibit several of the characteristics below, few will exhibit all of them, and some of the characteristics will manifest themselves in different ways depending on the context and what other characteristics are present. There is an adage that “If you’ve met one person with autism, you’ve met one person with autism.” You have not met them all.
As a Scout leader, you should not attempt to diagnose a youth as having autism. Leave that for health care and educational professionals. However, if you recognize a behavior pattern that resembles autism, feel free to try out any or all of the strategies described in this section. Keep using what works. So much about helping a Scout on the spectrum succeed is trial and error. Rest assured that there is little harm to trying out a strategy and learning that does not work. Just keep trying.
SOCIAL BEHAVIORS AND CHALLENGES OF AUTISM
Inappropriate social behavior is one of the most obvious symptoms of autism spectrum disorders. Most of the inappropriate behavior occurs because children on the spectrum decode the social context incorrectly. They do not learn how to behave socially from context or by watching others as most children do. Instead, they have to learn how to interact with others from direct instruction. This struggle has several facets.
Special Interests – Children, and some adults on the spectrum, develop topics in which they are deeply interested, to the exclusion of others. These topics may be conventional for a child, such as cars, Pokémon, or Legos; or they can be very eccentric, such as a fascination with prime numbers. The topics can persist for anywhere from a few hours to several years. There may be one such topic or several that are active at any one time. When you engage a person on the spectrum in conversation, the conversation often turns to their special interest, and it can be a challenge to get them to talk about anything else.
Facial Expressions – Most Scouts on the spectrum have a hard time understanding what a facial expression means until someone teaches them how to decode what they are seeing. You can imagine how hard it would be to cope if you couldn’t tell if someone is angry with you or is amused by you. This aspect is sometimes called “face blindness”.
Tone of Voice – Scouts on the spectrum are at constant risk of misunderstanding others because they do not catch the meaning beyond the actual words themselves. They do not catch on when something is said as a joke, or in sarcasm, or in irony. They also do not read the emotional state of the speaker that is conveyed in the tone of voice. For example, “Please sit down” takes on a whole new meaning when it is said in a short staccato burst through clenched teeth. This makes it especially hard as they hit the teen years where sarcasm and jokes abound.
Familiar People – Scouts on the spectrum, especially younger ones, do not easily distinguish between family, friends, acquaintances, and strangers. As a result, they may touch inappropriate people, invade another person’s personal space, try to start a conversation with a stranger, or make physical contact in inappropriate ways.
Rationality and Rules – People on the spectrum learn to survive in a social world by building a mental rule book to capture all of the quirks of human behavior that others take for granted. For example, think about the unwritten rules about where to stand in an elevator car depending on how many people there are. They also assume that any rules that they are given are concrete and will be rigidly enforced on everyone. When there are deviations, people on the spectrum tend to appoint themselves to police the rules and can be rigid with others.
Bullying and Other Abuse – Scouts on the spectrum are vulnerable to being abused by practical jokes and bullying. They can also get taken advantage of by others during group games. Their inability to read the unspoken intent of others leaves them gullible and nearly defenseless. Once they understand who took advantage of them, they are long to remember and slow to forgive.
LANGUAGE ASPECTS OF AUTISM
Aside from missing the non-verbal cues in what others say, Scouts on the spectrum may have a harder time using language than others. The difficulties go in both directions (expressive and receptive).
Nonliteral Language – The English language is full of metaphors, similes, and idioms. All of these are times where the words that are spoken don’t mean what they say because of the context or because of our cultural history. Consider the expressions “got off on the wrong foot”, “not even in the ballpark”, and “raining cats and dogs”. Such nonliteral expressions are lost on people on the spectrum unless they have made an effort to memorize the translations.
Social Language – While idioms are an obvious example, regular people also use indirect speech for emotional or social reasons. They “beat around the bush” to spare the feelings of others, let people down gently, give advice, make suggestions, or give hints. A person on the spectrum will rarely catch the intended meaning, but instead will focus on the actual words that are said.
Unfiltered Speech – Scouts on the spectrum tend to speak their mind without a social filter and have no idea when they are being verbally offensive.
Age-Inappropriate Language – Scouts on the spectrum tend to build a very grown-up vocabulary and syntax. They tend to use complex sentences with big words. While this makes them charming to adults, and they get along well with adults as a result, it also socially isolates them from their age peers. It is not unusual for them to speak and mispronounce words that they have only seen in print. For example, “façade” becomes “fa-kaid”.
SENSORY DIFFICULTIES OF AUTISM
With autism, stronger and weaker neural connections can form between the sensory organs and the brain. It is rare to have all of the senses affected equally and usually one sensory challenge will stand out. The struggles come in three forms and sometimes they are combined. One is that the youth on the spectrum perceives a sensation more strongly than most and it is uncomfortable. For others, the sensation is not painful, but it is so distracting that they just can’t tune it out and do other things. A few of them are very insensitive to a sensation, which can be dangerous if they do not perceive pain when they should. On the plus side, a Scout on the spectrum may notice things that other Scouts do not, such as plants, animals, and insects in nature.
Visual (Seeing) – Visual difficulties come in several forms. One is simple brightness of lights being too intense for comfort. Another form is visual clutter in the field of vision, which makes it hard to concentrate. A small number of people on the spectrum can perceive the flickering of light fixtures or have a hard time reading text against a white background.
Eye Contact – A common trait of people on the spectrum is that they avoid eye contact. When asked about this, they usually explain that they just can’t think when they are looking someone else in the eyes, so it is uncomfortable for them.
Auditory (Hearing) – Some people of the spectrum overreact to moderately loud noises. Others are driven to distraction by small repetitive noises, such as the sound of someone chewing gum, shoes shuffling across the ground, or the clicking of a ball-point pen. If a Scout on the spectrum has this difficulty and no way to get away from it, it can lead to an outburst. (See Module F for advice on “self-removal”.)
Tactile (Touch) – Insensitivity to heat, cold, or touch does not draw much attention as a difficulty, but presents a safety hazard. Some on the spectrum have problems when certain fabrics touch their skin, with the way garments rub against them, or from being touched by others in some particular way. Some find that having firm pressure applied to them has a calming and centering effect for them. The tactile sensation of being in the water can make a Scout averse to swimming beyond all reason.
Olfactory & Gustatory (Smell & Taste) – Smells, flavors, and textures of food that ordinarily are tolerable in the mouth can be repulsive to some people on the spectrum. Surprisingly, this presents one of the more serious risks to a Scout on the spectrum. Scouts on the spectrum cannot be compelled to eat something repulsive to them and will not eat such foods no matter how hungry they become. Though often written off as “picky eaters” such Scouts can become seriously malnourished on longer Scout outings if their needs are not accounted for in food planning.
EXECUTIVE FUNCTIONING (SELF-ORGANIZATION) LIMITATIONS
At all ages, people on the spectrum tend to struggle with a cluster of life skills that are known collectively as “executive functioning”. They have a hard time organizing themselves. The struggle to create and maintain plans of action, schedules, budgets, or to-do lists. They have a hard time reacting to unexpected problems and difficulties, and fail to keep on top of paperwork. To a degree all young people struggle with these things, but a person on the spectrum does not learn from “life experience” in the same way and doesn’t have the same motivational structure to overcome obstacles. “Natural consequences” or “learning the hard way” are not enough to get them to learn these skills on their own.
Motor Skills – Scouts on the spectrum may have poor gross and/or fine motor skills. Gross motor skills are things like walking, running, jumping, and swimming. Fine motor skills are things like handwriting, using scissors, tying knots, and whittling. They may also have poor awareness of where their body and body parts are positioned in space and how much force they are exerting (proprioception). This means that a Scout on the spectrum may simply be clumsier than other children, and may trip over or bump into things or people. Since the Scouting program includes many motor tasks, motor skill limitations impact our teaching methods significantly and in some instances make it necessary to get alternative advancement requirements approved.
Endurance – Scouts on the spectrum may give the appearance of lacking endurance or physical stamina because they tend to stop, or they ask to stop an activity. There might be a physical disability along with the autism that needs to be considered. (See Module R for more information.) However, in many cases this limitation is more about mind than body. For example, Scouts on the spectrum may not understand the logic or value of a long hike, so it seems pointless to them to keep going once after they have seen everything they can see. This can be overcome if an adult explains the purpose of the activity in terms the Scout can understand.
Self-stimulation (Stimming) – Scouts on the spectrum, and especially younger ones, sometimes have some form of repetitive motion or sounds (words, phrases, or noises) that they will make. Some examples are hand flapping, rocking the body, spinning the body or spinning objects, singing, echoing others, and noise making. While “stimming” is not well understood, it appears to be a response to stress and seems to be a way to control the sensory experience. Although it appears odd to others, it is a way to re-establish a degree of control.
LOSS OF CONTROL INCIDENTS & TRIGGERS
Autism creates a complex and unique set of behaviors and struggles for each person with the disorder. This makes it impractical to create a list of specific triggers, because few of them would apply to any one person. It is more useful to explain what is going on inside a person with autism.
Stress and Anxiety – People on the spectrum process very little on a subconscious or intuitive level. That means they have to use their conscious intellect to process all of the rules of social behavior on top of all the regular thinking that is expected of them. The result is that a Scout on the spectrum is under a constant level of mental fatigue or stress that others don’t experience. If you want to understand this condition, imagine how it would be if you had to move to a new job in a different community once a month and relearn all the subtle differences and new people each time. A person on the spectrum is mentally tired most of the time and has less of an emotional reserve than most people.
The Triggering Process – The triggering process begins when people on the spectrum are pushed against one of their unique challenges, with no good way to control or manage their situation. It may be that they cannot escape a distressing sensory environment. It could be that they are stuck dealing with a person who makes no sense to them or is being argumentative or demanding. It could be a situation where they are being pressured to perform when they do not believe they have the skills, or don’t understand the instructions, or have to overcome an aversion. It could also be a situation where they are being prevented from finishing a task that is already started. A thoughtful observer can usually sense when a person on the spectrum is becoming distressed before he or she acts out and can intervene in the situation to defuse it before it gets out of control.
Meltdown – A meltdown is one of three common reactions to being overstressed. It is characterized by sadness and crying. Especially in the social world of boys, such behavior tends to get one labeled as weak, so the social consequences last long after the meltdown is over.
Outburst – An outburst is a verbal (loud) or physical reaction, such as yelling, swinging arms, throwing objects, or hitting others. It is intended to create some space to escape the situation. Outbursts are often misinterpreted for true anger, meanness, or aggression and get treated as disciplinary infractions when they should not be.
Shutdown – A shutdown is the opposite of an outburst. The Scout just stops interacting with the world or communicating and will usually sit down somewhere. If the Scout can physically leave the area he or she usually will. Until the Scout can recover, he or she will not respond to anyone trying to talk. This behavior looks a lot like sulking or “zoning out”, but the goal is not to get his or her way or to punish others for refusing something.
Recovering – It is always better to intervene and create space for the Scout to calm down before a meltdown, outburst, or shutdown occurs. If it is already too late, help the scout get to a quiet space and give him or her some time to process the feelings and regain composure without talking right then. After that, it is worthwhile to talk to the Scout and help develop better strategies for the future. At a minimum, try to learn his or her advance warning signs or work out a code between you to allow you to help without embarrassing the Scout.
COMMUNICATING WITH PARENTS OF SCOUTS ON THE SPECTRUM
The single best thing you can do to create a path to success for the Scout and the rest of your unit is to build a strong partnership with the parents of a Scout on the spectrum. Remember that all parents have similar dreams for their children as they grow up, such as for their children to live on their own, to form loving relationships with a spouse and children, and hold a good job.
Joining Conferences – Joining conferences are a good thing for every Scout whether they have a known disability or do not. You should read Module F as well, which has much more information on this topic. In short, a Joining Conference is a private and candid conversation between the parents of a Scout and one or two unit leaders and takes place within the first few weeks of joining the unit. During the joining conference you want to learn: (1) What are the Scout’s unique strengths and struggles? (2) What tricks (accommodations and adaptations) are working for the Scout at home and at school? (3) What seems to trigger emotional or behavioral struggles? (4) How does he or she act when things are about to be overwhelming (warning signs)? (5) What concerns do the parents have about putting their child in Scouting?
Openness about the Disability – Parents of Scouts on the spectrum will have varying degrees of openness about the disability. You and your unit leadership will have to respect their confidentiality. Some parents will be very forthcoming with you about their child. Others know that their child has a disability but consider it to be a private family matter or do not want their child to be “labeled”. Others function in a state of denial. Some do not even recognize a problem since they or other family members have similar issues.
Ongoing Check-In – Much as the Scoutmaster Conference serves as a regular check-in time with a Scout, you need to plan to check in every few months with the parents. This needs to be an open and candid conversation. Begin by asking what changes (hopefully positive) they are seeing in their Scout, and share the successful moments you have seen when the parents were not there. If you are seeing a behavior from the Scout that you don’t understand or is getting in the way of his or her success, ask the parents what they know and how they manage that behavior at home and in school. During this kind of meeting, spend more time praising the Scout’s accomplishments than addressing the difficulties. Parents need encouragement too.
Appropriate Parent Alerts – Once you have a sense of how the Scout handles the environment and what the individual trigger situations are, you need to use that knowledge to give parents advance notice when activities are coming up that might be overwhelming for the Scout on the spectrum. Parents may want to opt-out from a particular campout or event if the Scout just isn’t mature enough or experienced enough to navigate the situation or if the sensory environment is unmanageable. While we want Scouts to experience challenges, we don’t want to knowingly put them into situations where they cannot succeed.
Learn the Scout’s Early Warning Signs – A parent has an advantage over any other adult in that they have a sense for when their child is getting overwhelmed and can intervene discreetly to keep their child from getting to the point of acting out. This means you need to invest time and attention to learn from the parents what the Scout’s warning sign behaviors are, and when to be careful. The Scout program is based on surmountable challenges, so encouraging and pressing youth is a necessary part. However, you want to back off before the Scout on the spectrum is pushed over the emotional edge. It is always easier to take a break than recover from a meltdown or outburst. Rarely is a goal so urgent that it can’t be put off until circumstances improve.
Requiring Parents to Attend – We should encourage all parents to participate with their children in the Scouting program, but there is only one good reason to require a parent to attend in order for a Scout on the spectrum to participate. That is when the health and safety of a unit member (including leaders and the Scout on the spectrum) is put at risk without the extra level of supervision only a parent can provide. Resist the urge to require parents to attend simply to make life easier for the leaders, other Scouts, and their parents. Remember, every Scout needs to chance to learn to function without mom or dad always being there. With that said, feel free to recruit parents of Scouts on the spectrum as leaders as they are often very committed to the success of all youth, including their own child. Such a parent should be used to work will all of the Scouts in the unit and only be considered “on call” to address specific issues with their own child.
COMMUNICATING WITH THE SCOUT ON THE SPECTRUM
You will need to develop a different way of talking to communicate with a Scout on the Spectrum. First of all, you have to stop using idioms, analogies, and metaphors. Speak directly, explicitly, and in plain language. Second, you need to be completely transparent and up front about what you want the youth to know and why. You don’t have to be harsh in your tone, but don’t flower anything up to try to spare his or her feelings. If you can’t say what you need to say because others are listening, move the conversation to where you can speak more privately (in sight of others but out of earshot, per youth protection rules). Sometimes it is hard to tell if a Scout on the spectrum has heard and understood because he or she refrains from eye contact or doesn’t give off body language. If you need to be sure you were heard, ask to have it repeated back to you.
Giving Instructions in General – Remember from the Executive Function section earlier, that a Scout on the spectrum typically cannot turn a general instruction, such as “pack your gear,” or “clean up the patrol kitchen” into a series of steps or an action plan on his or her own. You and your youth leaders need to give very specific sequential instructions to Scouts on the spectrum for nearly everything. With practice, the Scout can remember the subtasks and improve in this regard. Break down tasks into smaller steps than you would for other Scouts. Again, do not assume he or she will learn by watching others.
Direct Instruction about Social Rules – In addition to the regular social world, Scouting has its own distinct culture and expectations for behavior. A Scout on the spectrum is not able to pick up on the social rules by watching others (modeling). When you see Scouts on the spectrum in situations where they are not conforming to regular expectations and it is being a problem, you need to step in and explain the situation to them. This is a three step process. First, tell him or her which behavior is “not working”, such as talking too loud, standing too close, or not making eye contact. Second, tell the Scout how others react to that behavior. Using the same examples, others might see the Scout as angry, creepy, or as lying. Third, give a concrete rule that simulates culturally expected behavior, such as “leave at least two feet between you and the other person when you are talking”, or “try to make eye contact for two seconds at a time and twice a minute”. People on the spectrum navigate the social world with a mental rule book and pick up rules and exceptions to rules a little at a time.
STRATEGIES TO HELP A SCOUT WITH AUTISM SPECTRUM DISORDER
Scouting has much to offer a youth on the spectrum. In Scouting, we place youth in a wide variety of social contexts, with a wide variety of subjects, and with a wide variety of tasks. This variety is good for the Scout on the spectrum because it provides social experiences they can learn from and broadens their knowledge beyond their special interests. Scouting also allows them to participate and socialize with other Scouts of different skill levels. The human brain is a powerful thing and most of the strategies that follow take advantage of the fact that Scouts on the spectrum are able to learn most of what they need to become functional and successful adults. They will always be different, but they can be taught how to compensate and fit effectively into the social world. The role of a Scout leader is to facilitate that learning.
Medications – Since autism is fundamentally a brain “wiring” disorder, there are no medications for autism itself. However, a person on the spectrum might benefit from medication for anxiety or depression. Usually medications are provided for other conditions a person has and not for the autism itself. A Scout leader should not give families advice about medications. Medication use is a matter to be decided by the family in consultation with a health care provider.
Mainstreaming – The vast majority of Scouts on the spectrum can function in the traditional mainstream Scouting program for their age. The exception is for youth that have a significant intellectual delay or a profound communication limitation as part of their autism. Such youth may also need physical assistance with basic functions, such as eating and toileting, as well. (Other modules in the Inclusion Toolbox provide more information on these needs.) In such circumstances a special purpose unit may be the only way to serve these youth. In a nontraditional unit, the program can be adapted to a workable and enjoyable pace and a higher ratio of adults and caregivers can be provided. (See Module W for more on nontraditional units.)
Healthy Unit Culture – Your unit should create an accepting and tolerant environment for all your Scouts. It is hard for youth to empathize with others when they know nothing of the challenges a disability presents. It is often helpful for other Scouts in your unit to be told a little about the autism spectrum, without necessarily singling out the Scout on the spectrum. This is especially true for your youth leaders. Rather than focusing on getting the Scout on the spectrum to follow a youth leader, focus on training the youth leader how to encourage and lead a Scout on the spectrum. Any training of this kind should be done out of the presence of the Scout on the spectrum. Another tool is telling “social stories” in one-on-one, small-group, and large-group settings. Such stories are similar to a Scoutmaster’s Minute. They are simple, step-by-step descriptions of social situations (teasing or bullying, for example) and are told from the perspective how a youth feels at the time. You can use these stories to help all of your Scouts see things from the perspective of another person, including the unique viewpoint of a Scout on the spectrum.
Managing Special Interests – Special interests need to be approached in a balanced way. To a certain extent you can exploit a special interest to get the Scout to work on related advancement tasks, but obviously that will not work for most of what the Scout needs to know. What you need to keep in mind is that the special interest serves as an intellectual “safe space” for the Scout, where he or she feels confident and in control. The Scout needs to be able to spend some time in the safe space. If you struggle to get the Scout to engage in another activity, you may have to resort to some form of bargaining, where he or she commits to spend some time on something else that you would like done and you commit to spending some time with the Scout talking about his or her topic of interest.
Managing Sensory Issues – The first thing you should understand is that you are not going to be able to get the Scout to a build up a tolerance to a problem sensory environment. In time, the Scout on the spectrum will develop coping mechanisms for sensory overload triggers. Until that happens, you can make adaptations to keep the stress from becoming unmanageable. For example, if visual overload is the issue, you could take down some of the decorations on the walls of your meeting space or concentrate them on one wall and turn the Scouts away from it when the meeting is in progress. If noise is an issue, consider moving the activity outside where sound dissipates better, or subdivide the group so fewer voices can be heard at one time. If the uniform shirt is irritating, encourage the Scout to wear a comfortable shirt underneath. If food tastes and textures are an issue, creative menu planning may help. When possible, get everyone in the group to eat foods that the Scout on the spectrum can tolerate. Be creative.
Making Transitions between Activities or Topics – Scouts on the spectrum need more structure and order than their peers. They function best when they have a “program” to follow for the meeting or outing. They do not like to stop in the middle of a sequence, which becomes a problem when you have not managed your time well. If your leadership style is free-spirited and you like to “let nature take its course” in your Scout meetings and outings, you and the Scout on the spectrum will be frustrated. Plan the sequence of activities, and foreshadow this sequence with your Scouts. Foreshadowing means giving everyone a preview of what activities are coming up and in what sequence. Repeat the upcoming list as you make each transition. This allows the Scout on the spectrum to anticipate transitions before they occur. One caveat however: Unless you know exactly what time you will change from one activity to the next, don’t give an exact time to a Scout on the spectrum because he or she will hold you to it. It is better to say “later” or “very soon” than to say “a half hour” or “five minutes.” Similarly, if you have planned some extra activities to do if time permits, don’t include them in the preview until you are sure you will get to them. When you are sure, add the new information to your foreshadowing. If you work with a troop or crew, you need to train your youth leaders how to structure a meeting and provide foreshadowing.
Self-Removal – A powerful tool for helping Scouts on the spectrum cope with stress is to create ways for them to separate from a group, area, or activity at their own discretion. For safety sake, the Scout cannot be left totally unsupervised, but the Scout can be monitored from a distance by a responsible adult. What works best is to create and agree to a protocol with the Scout. In the protocol, the Scout needs to let a particular adult know that he or she is stepping away. Hand signals are OK as long as they have to be acknowledged. There needs to be an agreed upon place that that the Scout will go, perhaps a hallway or side room, or his or her tent if on a campout. The responsible adult needs to be able to look in on the Scout from time to time while he or she is “removed”. The Scout needs to check back in with the adult before returning to the activities of the unit. A major point of the protocol is to keep the adults from thinking the Scout is missing, malingering, or being disobedient. Self-removal is not the same as a “time out” and while there are times when you may want to encourage the Scout to self-remove, it should never be used as a disciplinary tool.
Handling Inappropriate Behavior – There will be times when a Scout on the spectrum behaves badly, and you have to be careful not to overreact. The key thing to remember is that most inappropriate behavior results from social ignorance or misunderstanding the actions of others. There will also be times when a Scout on the spectrum pushes boundaries, tests limits, seeks attention, or tries to get out of work—just like any other Scout. Recognize that as a Scout on the spectrum matures and mainstreams, he or she will behave more and more like your other Scouts. If inappropriate behavior does occur, it is critical to get all the facts about an incident and understand the perspective of all the players before you choose how to respond. Be sure to get the perspective of the Scout on the spectrum. In general, an instance of inappropriate behavior is a teachable moment: You can help the Scout on the spectrum understand a rule of social behavior he or she didn’t already know, or you can help the Scout see things from another’s perspective. Remember that Scouts on the spectrum have to be taught these things in an overt manner. One advantage of working with these Scouts is that you can be very straightforward because their feelings are not easily hurt. Remember, Scouts on the spectrum may not understand subtext, so speak plainly so they understand your message clearly. You can be as direct with them as they are with you, but remember that direct is not the same as rude or harsh. You need to explain what was done, how it made others feel, and what should have been done, without belittling the Scout on the spectrum. If the behavior was truly mean-spirited and some disciplinary action is appropriate, make sure the Scout understands what the consequences are and why they are being invoked.
Personal Safety and the Buddy System – Scouts on the spectrum, especially younger ones, are more likely than others to put themselves in danger without even realizing it. For example, since they are more comfortable with adults than others their age, they may wander off with a stranger and not realize they are separated from the group. They may get distracted by things around them and not notice that they are off the regular trail or that the group is moving away from them. They may jeopardize their safety by inattention to things around them, such as moving cars and crossing signals. Even though all Scouts should use the buddy system on outings, adhering to this system is especially important for Scouts on the spectrum. You cannot let your guard down when you are camping at a BSA camp or on private property. You also need to be thoughtful about who you assign to be the buddy for a Scout on the spectrum and choose a Scout with a good temperament for the job. The buddy may also need a little extra support, guidance, and encouragement from you. Do not rely on another Scout with special needs to be the buddy for a Scout on the spectrum.
Hazards of Games – Scouts on the spectrum perform poorly in team sports and other competitive environments. Since games and competitions are a common feature of Scouting, you need to keep an extra watch on things when a Scout on the spectrum is involved to assure that everyone is being a good sport and not taking unfair advantage of the weaknesses of a Scout on the spectrum. You need to be similarly watchful about youth-initiated games like “Truth or Dare” and practical jokes to keep them from getting out of hand and becoming bullying.
Pitching or Striking Camp – Sharing the work of pitching or striking camp is an important part of “esprit de corps” for a Scout unit, but the process is especially confusing and stressful for a Scout on the spectrum. In Scouting, youth lead this process, and they are still learning how to lead. If the Scout on the spectrum is being directed by a single leader, the stress level can be managed, but if several youth are giving directions at once (too many chiefs), the confusion and noise can trigger a meltdown. A boy leader can be taught to pay attention to the environment and manage it, but it may also be necessary for an adult to monitor the social interactions of the patrol and provide coaching before frustration becomes unmanageable. A second challenge is that a Scout on the spectrum often cannot break down a general instruction into its component parts and will do nothing as a result. For example, the Scout cannot turn “pack your personal gear” into a sequence of rolling up the sleeping bag, deflating and rolling an air mattress, putting everything into a duffel bag, and carrying the bag to the designated staging area. “Set up the patrol kitchen” and “Load the trailer” are just as cryptic. The Scout on the spectrum then acquires a reputation for being lazy or useless. The best solution is to have another Scout work side by side with the Scout on the spectrum throughout the process of pitching or striking camp. The “buddy” needs to be able to break instructions down for the Scout on the spectrum so he or she can help.
Handling Multiple Scouts on the Spectrum in One Unit – Given the statistics about autism, you may have more than one Scout on the spectrum in your unit, and even more if your unit becomes known as special-needs friendly. Whatever your number, remember that even though Scouts on the spectrum have similar disabilities, they are as different from each other as they are from the other Scouts. The adaptations you need to make will be somewhat different for each of these Scouts. It is a good idea to spread Scouts on the spectrum out among the dens or patrols of your unit if possible. This will give you the maximum flexibility to treat each Scout as an individual. Do not pair a Scout on the spectrum with another Scout with special needs as tent mates or camp buddies because they cannot effectively watch out for each other, and their differing needs will almost certainly cause clashes between them.
Advancement Adaptations – The majority of Scouts on the spectrum can complete the regular BSA advancement requirements if they are given enough time to master the skill and the opportunity to demonstrate the skill when they are in a productive frame of mind. Swimming challenges, discussed below, are an exception for some of these Scouts. Some forms of autism have related physical or intellectual disabilities. The advancement considerations for those situations are discussed in Module R for mobility impairments and Module P for intellectual disabilities.
Instruction Style – The EDGE teaching model (explain, demonstrate, guide, enable) works with Scouts on the spectrum, but you may need to go more slowly and break tasks into smaller steps than usual. You may also need to slow down to allow for limitations in motor skills. This additional time isn’t difficult to devote at a unit activity, but it may be a problem in a larger setting, such as at summer camp. At camp, instruction tends to be compressed to a rapid-fire sequence, and the teachers at camp are often older Scouts rather than adults. This increased tempo of instruction can overwhelm a Scout on the spectrum, and since the camp counselors have limited teaching experience, they may not know how to compensate. As a unit leader there are a few things you can do to help with summer camp. (1) You can pair the Scout on the spectrum with a more mature Scout as a buddy to help stay on task during instruction time. (2) You can have an adult leader shadow the Scout to his or her classes and then continue working during free time. (3) Your ultimate fallback is to work with the Scout after camp and offer the additional instruction time needed for him or her to complete the badges.
Organization of Advancement Work– In advancement, we must not do the work for the Scout, but we can set the stage to give the Scout a realistic chance of success. For Scouts on the spectrum, you may need to supplement their self-organization. The Scout may have to be talked through the process of breaking down subtasks, finding opportune moments to complete work, identifying ways to combine tasks into one event, etc. In providing this assistance though, you must be on guard for advancement tasks where planning or analyzing is the point of the advancement task. Be especially careful with Personal Management merit badge and the Eagle Scout Service Project.
Swimming Requirements – Many non-swimmers are anxious about getting into the water and learning to swim. A meaningful fraction of Scouts on the spectrum have such a strong tactile aversion to getting into the water that the standard BSA swimming requirements are not achievable for them. They don’t look any different from other Scouts, so it is hard for others to understand this. While you should certainly attempt all of the encouraging and coaxing you would do with any other Scout to try to get them over the hump, there may come a point where everyone must accept that the Scout’s disability prevents him or her from completing the standard requirements as much as being quadriplegic would. This may be challenging to document to the satisfaction of an Advancement committee, but it is necessary to get alternative requirements approved if the Scout is to advance at all.
Last Revised 6/6/2020
 The Boy Scouts of America would like to thank the Autism Society of America (autism-society.org) for reviewing the contents of this module for accuracy and usefulness.
 Module S is devoted to Speech and Language Disorders and has more complete coverage of this topic.