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Assessing Youth with Autism Spectrum Disorders for Their "Fit" at Camp
One of the best experiences for a child is that of being a camper. The opportunity to be in a child-centered environment, a setting that uses Mother Nature to help deliver a program resulting in outcomes such as improved self-confidence, self-esteem, and fun is tough to beat. Most readers believe that every child should have a camp experience — but not every camp is a good fit for every child. There truly is a camp for everyone; the secret is finding the right fit between child and camp.
This article discusses that process, specifically assessing the "fit" between a given camp and children with autism spectrum disorders. Parents of children with this challenge often ask, "How do we know if your camp is a good fit for my child's needs?" Camp directors and nurses wonder, too, especially since a given child's personal profile often varies from classically described symptoms. This important point — individual variation — requires that one be flexible in the application of guidelines. Each child has his/her own unique profile. Discussing autism spectrum disorder isn't a black and white issue; it embraces the gray with gusto!
In addition, a growing number of camps are attempting to be as inclusive as possible. This focus on ability — not just disability — allows one to explore what's possible rather than (only) what won't work. Doing this requires assessing the match between the needs of a prospective camper and what the camp program can, indeed, provide. The goal is for all parties to be satisfied no matter what the final decision about camp for this particular child. Also consider consulting local professionals who might serve as a resource, should that be desired.
What Is an Autism Spectrum Disorder?
Autism spectrum disorder (ASD) is a broad term used to describe a pervasive developmental challenge that causes problems with social interaction and communication. For some people, ASD may be accompanied by ritualized or repetitive behaviors. These challenges often trigger an emotional response. The disorder's involvement can range from very mild to quite profound. The term currently includes classic autism, Asperger syndrome, and a PPD-NOS: pervasive developmental disorders not otherwise specified (Centers for Disease Control and Prevention, 2008; Kutscher, M., 2006; Myers, S.M., 2007; National Institutes of Health, 2008).
Rather than get too caught up with what specific aspect of ASD one is coping with, it is this author's opinion that camp professionals focus on three key concepts about ASD: the child's (a) social interaction, (b) communication abilities, and (c) any accompanying repetitive or impactful behaviors. A focus on these allows one to talk about ASD in a framework that complements camp life. Let's flesh out this idea a bit more.
If something is described as "developmental," it implies a changing nature. Consider, for example, the development of children. The repertoire of social skills people expect from a two-year-old are different from those used by a seven-year-old, and are even more refined once that child reaches the teen years. As children grow (develop) and have their own life experiences, they typically learn about the range of behaviors that people accept. Children become socialized. In addition, they learn to use and "decode" the nuances of communication, be that through words, body language, and/or use of personal space.
Some kids, however, find it more difficult to learn this. Their ability to read embedded cues in the communication and behavior of other people isn't there or exists only in some ways. In addition, the child may be limited in their own behaviors, choosing to repetitively respond the same way time after time. Some of these kids fall under the ASD umbrella. There isn't anything different about how a child with ASD looks that sets them apart from others. Rather, the distinction in how they interact, behave, learn, and communicate is what makes the difference. The distinction may change over time as the child learns how to cope with their uniqueness.
Talk with Parents
Start by laying a ground work and asking broad, general questions. What does the family do to help the child? What works well and what is challenging? Ask the parent to describe the child's ability to communicate as well as understand what others are saying. Ask about the child's social skills; in what way is this child different? Find out what frustrates the child, how the child reacts to that frustration, and what the parent does to "make it better." Ask if the child has been to camp before and how that went. Then get more specific with questions such as these:
- Is the child using medication? If so, will she/he have been on that medication at the same dose for at least three months prior to coming to camp? What therapeutic effect does the child get from the medication? Is it adequate?
- Explore the home living patterns:
- Does the child share a room with a sibling? If so, and because the camp's cabin or tent often contains more than one other person, how does the child react when frustrated with the presence of others? What triggers these frustrations? If the child has his/her own room, ask the parent to set up at least two consecutive nights when cousins or friends might "bunk in" to simulate what camp might be like. Did the child tolerate this well? Tolerating a couple nights is different from a whole camp session. Talk about this; what might happen when the close living of camp is sustained over time?
- Does the child have experience being away from home with someone other than family members? Can the child express his/her needs in these situations? What's the longest time that the child has been away from home/parents? How'd that go? Could the child do this without phone contact with the parents? Could the parents?
- Does the child have chores at home? Is she/he responsible for taking care of personal items? Is there a ritual to this? Having chores indicates the child is used to helping out, something that occurs at camp, too. Asking about ritual should disclose patterns; these should be explored for appropriateness to the camp setting.
- Does the child do overnights at friends' homes and/or attend birthday parties fairly regularly? This indicates acceptance by peers and is a positive indicator for camp.
- Ask about school experiences:
- Is the child grade appropriate? Does she/he move independently from place to place at school? If there is assistance from a paraprofessional, have the parents explain the scope of that assistance and assess that for its complement to camp.
- Is there an IEP (individualized education plan)? If so, request a copy. It will describe the child's learning strategies, something that could be helpful to various activity counselors.
- What does the child enjoy most about school? What's most challenging? Listen to these responses for their corollary to the camp program and discuss that with the parent.
- What after-school things does the child do? This indicates the child's ability to tolerate a longer camp day. Do after-school activities include interaction with other children or are they solitary activities? Those things that have the child interact with others provide an indicator of the child's on-going resilience, especially in situations when the rules of school aren't guiding children's behavior.
- When doing after-school activities, what does the parent tell the leader about their child?
- Is the child able to tolerate prolonged exposure to noise? The school lunch room is a good complement to the camp dining room. How might the child handle prolonged noisy environments like the camp's Olympic Day or a rousing campfire hard on the heels of a noisy meal?
- About interaction with others:
- Ask the parent to describe the child's idiosyncratic behaviors. Explore how these might be impactful at camp, especially if the child talks to him/herself, stares overly long at people, and/or steps too close to people.
- Idiosyncratic behaviors sometimes occur under certain circumstances — like when a child gets overtired, over-stimulated, or stressed. Explore the "triggers" under which the behavior occurs and the strategies that mitigate the situation (defuse it or prevent it from happening). This may be when the parent references tools such as Buron's A 5 Could Make Me Lose Control (2007b).
- When overwhelmed, how does the child express that frustration? Does behavior vary when the frustration is a mild annoyance as opposed to a full blow-out? Maybe there is no difference? What calms the child?
- These idiosyncratic behaviors are sometimes called "target behaviors" or "behaviors of concern." At this point, it's quite possible that some specific behaviors of concern have been identified from the camp's perspective. Clearly state these to the parents; do they concur?
Talk about Camp and Anticipated "Tension Points"
Understanding the child's repertoire of socialization skills, communication, and emotional patterns allows one to then explore the possibility of camp. The parents know their child; the camp professional knows camp. The goal is to make a determination about the "fit" between the two, child and camp. The camp professional should, at this point, review the camp's criteria of children who attend camp — the essential functions of a camper (Erceg, 2008). These essential functions are linked to the camp's mission which, in turn, drives the core elements of the camp program, those experiences that every camper has. Enrolling a camper means the child meets the criteria for participation; in other words, the child meets the essential functions of being a camper.
The child with ASD often falls in a gray area. This child can often meet criteria if things go "just so"; it's those not-just-so times that pose challenges. Knowing the information gleaned by asking questions allows the camp professional to then talk with the parent about coping strategies. Some things have easy solutions. For example, if the child's behavior of concern is triggered by other people touching their stuff, having a ground rule about this — and applying it to everyone — may be possible. Other things may require compromise and/or modification, such as telling other campers about the needs of the child with ASD. Other elements may not be so easy; they clearly fall outside the camp program's ability to meet the requirement. The key is to reference the essential functions of campers. That's the baseline. If a child can meet these, that child is eligible for camp enrollment.
In the interest of being inclusive, especially when the child's camp participation would be possible if someone could be with the child one-on-one, some camps suggest that parents consider having their child attend camp with a Personal Care Attendant (PCA). It's the presence of the PCA that just might make it possible for the child with ASD to have a camp experience. A PCA is not an employee of the camp, but rather retained by the parents to assist the child. This person is trained by them to read the child's behavior, provide coaching at critical points, remove the child from potential trigger situations, and work with the child when frustration erupts. In the interests of the Americans with Disabilities Act, the spirit of reasonable accommodation, and the desire to be as inclusive as possible, the PCA option may need to be discussed. (See the sidebar on the previous page for a sample PCA policy for a resident camp.)
Remember Plan B
When moving toward a decision, discuss what will happen if the anticipated plan doesn't work or breaks down. This is Plan B, and it should include the point at which the child would leave camp. But also consider other contingencies. What if the child's coping mechanisms fatigue after day four, resulting in an over-tired camper whose emotional outbursts are impacting the experience of other children? Is it possible for the PCA to work with program staff and design a "down day" for this child? What if the PCA gets ill? What if something comes up that was not anticipated? Discussing options often identifies neglected areas of the conversation. For example, what should other campers be told so they're more cognizant of how they can help? Identifying and addressing contingencies should improve the plan.
At this point, both the parents and the camp professional need time to consider the direction of their conversation. Rather than move directly to making an enrollment decision, it's advisable for both parties to think things over. Perhaps they need to do some reading; online and print resources such as The School & Community Tool Kit (Autism Speaks, 2006) and Buron's A 5 is Against the Law (2007a) are excellent. So is contacting local groups who provide support to the ASD community. Maybe the child's therapeutic team should be brought into the conversation. Perhaps the camp professional would like to discuss this with others, including legal counsel. In other words, it's recommended that a decision about enrollment be postponed until both the parents and the camp have time to consider what they've learned about and from one another. Schedule a call-back for the final "go" or "no-go" decision.
Hopefully the call-back is a consensus decision; after thoroughly exploring things, both parent and camp professional agree on what's best for both child and camp. When disagreement exists, there comes a point where the camp professional then has to make a decision. This can be tough; balancing the needs of a child with the resources of a camp program requires a reflective and thoughtful decision. Conditions to these decisions may be an option. Perhaps the child can come to camp using the anticipated plan and supported by pre-scheduled meetings with parents to review how the plan is working.
This article began by reminding the reader that autism spectrum disorders aren't black and white; it also drew the reader's attention to the fact that each child with this diagnosis has their own unique presentation. Getting to know what a child with ASD does well and what the environment might do to minimize potential hot spots is the focus of pre-camp assessment. Ultimately, we want each child's camp experience to be the best. Sometimes we can facilitate that within our own camp; sometimes we need to acknowledge that ours isn't the best and make a referral to another camp.
Autism Speaks (2006). School & Community Tool Kit. www.autismspeaks.org/community/family_services/school_kit.php. Note: Transferable to the camp setting, this 203-page document is designed to "assist the school community in understanding and supporting students with autism."
Buron, K. D. (2007a). A 5 is against the law! Social boundaries: Straight up! An honest guide for teens and young adults. Shawnee Mission, KS: Autism Asperger Publishing Co.
Buron, K.D. (2007b). A 5 could make me lose control! Shawnee Mission, KS: Autism Asperger Publishing Co.
Centers for Disease Control and Prevention. (2008). Autism spectrum disorders fact sheet. www.cdc.gov/ncbddd/autism/index.html
Erceg, L.E. (2008). Health screening: Thinking about its scope and objectives. CompassPoint, 18(1), 12-14.
Kutscher, Martin L. (2006). Autistic spectrum disorders: Sorting it out. Retrieved from www .pediatricneurology.com/autism.htm Myers, S.M. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162-1182.
Myles, B.S., and Southwisk, J. (1999). Asperger syndrome and difficult moments. Shawnee Mission, KS: Autism Asperger Publishing Co.
National Institute of Health. (2008). Autism spectrum disorders (Pervasive developmental disorders). Retrieved from www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml
Linda Ebner Erceg, R.N., M.S., P.H.N., is the associate director of Health & Risk Management for Concordia Language Villages and executive director of the Association of Camp Nurses in Bemidji, Minnesota.