Autism Awareness and an Increase in Diagnosed Children

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As reported recently in the Wall Street Journal (and elsewhere), autism diagnoses have risen sharply in recent years. The CDC announced a 23% increase in the number of people diagnosed “on the spectrum”, including as many as 1 in 88 American children.

As always when a study like this is released, doctors and scientists rushed to speculate what the change in numbers is all about. Some attribute the increase to a newer awareness in lower income families and minority groups who have previously been under-diagnosed. Others suggest that the change may be due to environmental factors, including vaccines – although this theory has been largely disputed and the original research tying vaccines to autism is now known to have been based on “bad science”. Finally, others wonder if the increase in diagnosed individuals is not indicative of a rise in the incidence of autism, but rather in increase in the awareness of doctors, therapist and parents who recognize less obvious behaviors as attributable to a spectrum disorder.

For those high-functioning kids that we know and love (Asperger’s, NLD, PDD-NOS, HFA), we definitely feel that the rise in diagnoses is at least partially due to a better understanding of these conditions. Asperger’s, for example, is a fairly new diagnosis. Many individuals were just thought of as “quirky” or “eccentric” until the mid-90s when the Asperger’s diagnosis really took hold in the US. Now, it seems as though Asperger’s is everywhere – books, movies, the news, etc. I know from our campers that being a member of this fairly new “tribe” has been somewhat of an awakening for them. They are happy to feel a part of a group – an experience that is not always familiar to them.

Regardless of why more individuals are being diagnosed, we are happy to see that there is more awareness and that people are talking about the Autism Spectrum. I turned on NPR the other day and quickly realized the segment was about ASD. A gentleman in his 60s called in and said that he was diagnosed with Asperger’s in his 50s and having the diagnosis was such a relief. He now understood why he was the way he was. It gave him some comfort. If that’s the case for many other individuals with AS, then perhaps this rise is a positive: more self-awareness, pride and connection for those on the spectrum and more public understanding, advocacy and appreciation for the “Aspies” among us!

— Debbie

Camp Arrival Day

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When I was asked to be a “guest blogger” I started thinking about the start of the summer and in particular, arriving at camp. Arrival Day is a big deal. Some people find it exciting, some totally overwhelming … and I’m talking about everyone: campers, families, staff, newcomers and returners. I come from the UK, where camp isn’t nearly as much a “way of life” as it is for many in the US. When I first started my camp career many years ago, I wasn’t entirely sure what to expect. Yes, I’d seen movies set at camps and read all of the information that I’d been sent, but it was all a bit of a voyage into the unknown. I had my safety net though, as I knew a couple of people at that camp. Years later, when I started working at Akeela, it was a different story. This time I knew the basics of camp life but didn’t know anybody at Akeela. I’d spoken with Debbie and Eric on Skype, but that was it. Both very nerve-wracking experiences, but both very positive experiences. I was made to feel so welcome at each, and quickly came to feel like a part of the family.

Over the years, I’ve seen many different ways of people handling their emotions on Arrival Day. From those who arrive filled with energy, eager to see old friends and have new experiences, to those who experience more difficulty with their transition: the camper who refused to enter their cabin because “it smells of wood”, the boy who refused to speak for 8 days and would only communicate by scribbling notes, the girl who was so over-stimulated that she couldn’t stop talking, barely even pausing to draw breath.

The arrival that will stay with me forever though, comes from my second year as a Unit Leader at my old camp. Arrival Day was going smoothly, and eventually the time came when the buses arrived, and everyone had arrived. I was performing my duties and checking people off on my list, when I realized that one was missing. At pretty much the same moment, my walkie-talkie crackled into life and asked me to make my way to the Health Center. When I arrived I was confronted with the sight of a young man, sobbing and on the verge of hysteria. One of the nurses pulled me to one side and told me that he’d been like this for a lot of the bus ride, and so they got him off the bus at the office and brought him straight to the Health Center to try and calm him down. I sat down and talked to him for a good couple of hours. I found out that he was homesick, that this was the first time he had been so far away from home and that he thought that he had made a big mistake coming to camp for the summer. Over the two hours, he calmed down a lot, and when I eventually asked him if he felt ready to go down to the bunk and meet people he nervously agreed.

The thing is that this was not Camper Arrival Day, it was the Staff Arrival Day! Martijn was a 22 year old counselor who had come on his own from the Netherlands. Well, it took Martijn a few days to come out of his shell, but he turned out to be one of the most empathetic and engaging counselors I have ever had the privilege of working with. He came back to camp for three years and did some fantastic work with the campers that were placed in his care. We’re still in touch to this day, and he always reminds me of his inauspicious arrival and how he didn’t think he would make it that summer, and I think that’s what will stay with me.

In fact, I suppose that’s what I’m trying to say in this blog. No matter how nervous you feel about coming to camp, we’ll do our very best to help you through it and get you to have an amazing summer. Everyone that I’ve mentioned here went on to have a great time and made new friends, enjoyed their activities and did better than they thought they would with being away from home. Sometimes these things aren’t the easiest, and that’s OK – but there are always people who are there to help and make you feel better.

– Rob Glyn-Jones
Camp Akeela Head Counselor

Tri-State Camp Conference – Getting the word out about Asperger's at camp

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Eric, Jaynie and I just returned from 3 days with 5,000 other camp professionals. When you spend your entire year getting ready for the summer, working in an office with two other people, it’s extremely important to take opportunities to share ideas with others in your field. We’re lucky. Because we are a part of the CampGroup family, we often get together with 13 other sets of camp directors to discuss “best practices” and to support each other in our work. However, nothing compares to the American Camp Association’s Tri-State Camp Conference held annually in March. It is an amazing opportunity for us to talk with other camp directors, to learn from each other and for us to share our own knowledge and experience with our peers.

This year, Eric and I presented two sessions. The first was called, “What is Asperger’s and What Does it Look Like at Camp?” We believe passionately in helping others understand more about Asperger’s – especially at camp. Eric and I have worked at many “traditional” summer camps where children on the spectrum are expected to “fit in” with their typical peers without the camp staff truly appreciating these amazing kids. We want to help camp professionals understand what kinds of training and accommodations are needed to help a child with AS really thrive. More importantly, we believe that not all camps are truly equipped to make the necessary changes in their community, program and staffing to best work with campers on the spectrum. We encourage our colleagues to ask questions of new camp families and to work together as a team with parents to make sure that camp will be the right fit. Unless camp professionals understand AS well, they cannot make these decisions.

Our second session was a 3-hour workshop where Eric and I spent more time focusing on the idea of “fit”. We spoke to a group of camp professionals about helping families find the right camp for their child. We encouraged them to explore the way they gather information about perspective campers so that they can give parents honest feedback about how successful they feel a child may be in their camp community. We suggested that having a camper “get by” or “survive” was not good enough; we believe that all campers deserve a setting in which they can THRIVE!

As always, teaching and learning is both exciting and energizing and we returned to our offices in Philadelphia with many new ideas and plans for this summer and beyond! We’re grateful to be in a profession that values continuing education!

— Debbie

p.s. – For a related article that we published, see Striving for More than “Surviving”.

Unplugging at Camp – A Break from the Digital

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I was in the gym the other day and I noticed something incredible.  The person next to me on the stationary bike had his blackberry out checking email, the girl behind me was watching a show on her personal TV, and the receptionist was behind the front desk playing a game on her iPad.  It hit me as I glanced down at my iPod that most of us are not even able to separate from technology long enough to get a work out in.  I found myself longing for the summer where I get back to nature, put my phone away and save my eyes from days of sitting in front of a computer.

All of the buzz and national attention surrounding Richard Louv’s bestselling book “Last Child in the Woods” (http://richardlouv.com/books/last-child/) about nature deficit disorder and children has reaffirmed for us as camp professionals that the summer camp experience is an excellent way for children to put away technology and reconnect with nature. Most of the potential campers we have the pleasure to meet during the off-season tell us they are very interested in computers, video games and other forms of technology.  When we meet a new camper, we are asked without fail these important questions: “Can I bring my video games?”, “Can I have my cell phone?”, or “Do you have computers at camp”.  When we respond with the very unwelcome, “no”, many of them look absolutely horrified.  Even parents say, “There is no way my child will make it without a computer and his handheld games.” Months later when these same children are at camp, we smile when they stand beaming on the dock with a fishing pole, stand at the top of a mountain they just hiked with arms raised, or fly down the zip line with a huge grin on their faces.  Once they get to camp and are trying so many new activities and meeting new people, they are not thinking about their video games or computers anymore. Many of our campers also make new friends by bonding over their shared interest and begin discussing together which level they are currently battling on a certain game.

One of the many wonderful benefits of any summer camp is a break from the digital and our reliance on technology.  Campers get the chance to experience nature, try brand new activities they never knew they would enjoy and to just be a kid.  For our campers, this break from technology is especially important. Handheld games are most often a solitary activity and for children who have difficulty fitting in at school or interacting with their peers this can be a source of comfort, but can also be quite isolating.  At camp, campers are surrounded by their peers and have many incredible opportunities to meet new people and engage in different activities. When they do not have their video games to rely on, they are able to interact with their bunk mates and practice many of the critical social skills that are sometimes difficult for them. At camp, campers can prove to themselves that they can go 3 1/2 weeks without technology and can “rough it” in the wilderness! As camp professionals, we see this as an amazing accomplishment and we hope the take home message is that kids do not need to rely solely on video games to have fun. When our campers put down their video games, they might just make a great, new friend and discover many amazing activities in nature that can become new and important interests when they return home!

An interesting article about unplugging at camp:

http://www.americanwaymag.com/hannah-viroslav-american-camp-association-iphone-camp-champions

-Jaynie

Asperger's – A Disappearing Diagnosis?

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In the world of Asperger’s, there has been a lot of buzz for the past two weeks. The NY Times published an article, “New Definition of Autism Will Exclude Many, Study Suggests”, and our inboxes were suddenly full. Everyone wanted to weigh in on this important moment in time … a time when the Asperger’s Diagnosis might disappear. Or will it? At Camp Akeela, many of our campers proudly wear the “Asperger’s badge” and feel like the diagnosis gives them a sense of identity. It makes them feel like they belong to something important. For many, it’s the only group with which they really identify.

Then they come to camp. Akeela provides our campers with an opportunity to belong to a community and to feel like they are a part of something bigger than themselves. Many of our campers do not have a diagnosis or they don’t identify with the one they were given. Nonetheless, they connect with one another. Does a diagnosis matter? Unfortunately, it does matter for practical purposes. Without a diagnosis, people worry that they will no longer get much-needed educational or psychological services (and funding). All children deserve the support they need to reach their optimum potential. It’s a shame that a diagnosis is what determines that. Wouldn’t it be nice if children were able to get the services they need without having to fight for them every step of the way? It would make such a difference if educators and those in the mental health fields understood the intricacies of the behaviors and emotions BEHIND the diagnoses they use to determine eligibility.

— Debbie and Eric

Camp Builds Resiliency

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A recent article in Psychology Today (here is the link) by Michael Unger highlights how meaningful camp is for children. The author states that, based on his research about resiliency, camp clearly teaches campers life skills that can’t be taught elsewhere. Of course, we agree and have felt strongly about this for as long as we’ve been campers ourselves. For our campers (many of whom have Asperger’s Syndrome) this is even more true.

Our campers often tell us that they don’t fit in at school, in their communities, even with their siblings. Camp Akeela provides them with an opportunity to meet other children like them who understand what their world is like. At camp, they can be themselves without having to work so hard to fit in. Besides meeting peers who understand them, campers at Akeela learn about others. They understand that the world is larger than themselves and that they can be a part of it if they open up their minds. Unger writes, “Perhaps best of all, camps offer kids a chance to feel like they belong. All those goofy chants and team songs, the sense of common purpose and attachment to the identity that camps promote go a long way to offering children a sense of being rooted.”

All camps give campers a chance to learn how to be independent. This includes taking care of themselves (showering, brushing their teeth, remembering to use deodorant), taking care of their belongings (making their own beds, folding their own laundry), and taking care of their new relationships they have formed at camp (learning to say sorry, welcoming new friends into a group, showing interest in those around them). These are all life skills that all children must learn. For our campers, we feel these skills are even more important. Sometimes, as parents, we lose our voices with our children and begin to feel less effective. At camp, children are empowered to do the things their parents have been asking them to do on their own … sometimes because a new (“cool”) counselor is asking them to do it, sometimes it’s because the whole group is doing it, but usually, we find that campers do these tasks because they want to know they can. And when they leave camp, they feel great about themselves.

Camp isn’t just about learning how to sail or make friendship bracelets … it never was. It has always been and always will be about helping children become independent and resilient people. It is what we are most proud of as camp directors.

— Debbie

Homesick and Happy – A Book Preview

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As an avid and unapologetic reader of novels, I very rarely get excited about the publication of a non-fiction book. (Compared, for example, to the thrill I feel whenever I think about the May 8th release of John Irving’s next novel!) Yet, here I am, devoting this blog post to a parenting book coming out on May 1st.

Homesick and Happy: How Time Away from Parents Can Help a Child Grow is the newest work by Michael Thompson, author of (amongst others) Raising Cain and Best Friends, Worst Enemies – Understanding the Social Lives of Children. If you’ve read his books, or been lucky enough to hear him speak, you know that Dr. Thompson really understands child development and that he shares the results of his research with humor, compassion and warmth. In a recent issue of the American Camp Association magazine, he described his approach to writing Homesick and Happy. Rather than criticize overprotective parents, he empathizes with every parent who wants what’s best for his/her child … and makes the case for going away to sleepaway camp as a critical step in a child’s social and emotional development.

Here is Amazon’s description of the book:

In an age when it’s the rare child who walks to school on his own, the thought of sending your “little ones” off to sleep-away camp can be overwhelming—for you and for them. But parents’ first instinct—to shelter their offspring above all else—is actually depriving kids of the major developmental milestones that occur through letting them go—and watching them come back transformed.

In Homesick and Happy, renowned child psychologist Michael Thompson, PhD, shares a strong argument for, and a vital guide to, this brief loosening of ties. A great champion of summer camp, he explains how camp ushers your children into a thrilling world offering an environment that most of us at home cannot: an electronics-free zone, a multigenerational community, meaningful daily rituals like group meals and cabin clean-up, and a place where time simply slows down. In the buggy woods, icy swims, campfire sing-alongs, and daring adventures, children have emotionally significant and character-building experiences; they often grow in ways that surprise even themselves; they make lifelong memories and cherished friends. Thompson shows how children who are away from their parents can be both homesick and happy, scared and successful, anxious and exuberant. When kids go to camp—for a week, a month, or the whole summer—they can experience some of the greatest maturation of their lives, and return more independent, strong, and healthy.

At Camp Akeela, we talk to campers all the time about how it’s okay to feel both homesick (sad about missing their parents, siblings, pets, house, bed, foods, etc.) AND happy (glad to be making new friends, having new experiences, feeling confident and valued, etc.) at the same time. As Dr. Thompson seems to understand, we have very similar conversations with the campers’ parents! Every parent who sends their child into our care makes a decision to tolerate their own anxiety in exchange for the unique and life-changing benefits that camp has to offer.

— Eric

Choosing a Special Needs Camp – Part 2

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In our last post, we talked about why camp is such a unique and valuable experience for kids with special needs. We also outlined a few steps to help parents start looking for the best camp for their child.

Once you’ve done some self-reflection about what you’re looking for and conducted some research on what’s out there, you’re ready to take the next step, which is to speak with the camp directors. These are the people who will have ultimate responsibility for your child’s well-being. You should feel comfortable enough to speak candidly with them about your family. Most of all, they should understand your child’s needs and be passionate about changing the lives of young people!

Questions to ask the camp directors:

  • What is the camper to staff ratio? How many staff members and campers live in each bunk?
  • How do you recruit and train the staff? What are your basic requirements for age and related experience?
  • What are the living accommodations? Will there be enough space to accommodate my child’s needs?
  • What can you tell me to confirm that you really understand my child’s special needs?
  • What is the application process?
  • Are you willing to meet me and my family?
  • Tell me about how you got involved with this camp?
  • How will you help prepare my child (and me) for camp before the summer?
  • How will the directors and staff communicate with me while my child is at camp?
  • Is there flexibility in the camp program to accommodate a challenging day or a need that my child has?
  • How much structure and choice are built into daily activities?

The camp experience is an incredible gift to give your child. You’re now well on your way to finding the camp that’s the best fit for your camper!

— Debbie and Eric

Choosing a Camp for a Child with Special Needs

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Overnight summer camp teaches skills in a variety of disciplines – sports, arts, nature and the like. However, the enduring value of summer camp is not the skills that it teaches, but the values and traits of character that it imparts. A camp experience teaches children to work together more cooperatively, resolve conflicts, assume responsibility, and develop self-reliance and self-confidence.

Parents of kids and teens with special needs may be reluctant to send their children to sleep-away camp. Yet, these children – specifically those who struggle socially – stand to benefit the most from the right camp experience. More than anything, great camps teach socialization skills. Overnight camp is an environment in which children learn about living, working, and playing together in a supportive community. Many children form their fondest memories and their deepest friendships at camp.

Of course, not every camp is equipped to address the specific needs of every child. Finding the right camp is paramount to a successful experience. Here are some suggestions for navigating the process:

Selecting a Summer Camp for Your Child

The first step should be to discuss the process as a family. Make sure you and your child are on the same page. It’s never a good idea for him/her to find a brochure in the mail before you’ve talked about camp!

Questions to ask yourself and your family

  • What is on my “must-have” list? (e.g. certain program offerings, minimum session length, …)
  • Will my child “regress” without certain interventions?
  • What type of environment is necessary for my child to make progress in his social/emotional/educational development?
  • Is my child prepared to live in a more independent way?
  • What kind of support does my child need to be successful?
  • What are my goals in sending my child to camp?
  • How important is it to me what the other campers are like? How similar to my child do they have to be in order for him/her to fit in well?

You’re now ready to do some research. Use the American Camp Association, the Web or resources within your community to identify potential camps. Request and review camp websites and brochures.

In our next post: Questions to ask the camp directors. Stay tuned!

— Eric and Debbie

We Love What We Do!

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People often ask us why we do what we do. They wonder why we’ve chosen to spend our summers with kids on the spectrum. They can’t imagine how we find the energy or the patience, … nor a full staff of young adults who want to accept the challenge with us. We can’t understand why anyone would NOT want to do it! We have the best job in the world. Do we have tough moments? Sure. Don’t we all? That’s what makes all of the other moments at camp that much more thrilling.

When we started Akeela in 2008, people wondered how a community made entirely of “quirky” kids would work. If the campers all struggle with social skills, how could we expect them to live in close quarters and get along? We knew that our campers would not only do okay, but would truly thrive if we established the right environment. Four years later, we feel pretty great about that environment. Our campers tell us that they feel more at ease at Akeela – that they don’t have to work as hard to fit in because everyone at camp really “gets” them. They can relax and be themselves and, as a result, they have an easier time making connections. For the first time in their lives, they feel as though they are in a world made for them, not one in which they constantly have to battle to be understood. For three and a half weeks, they experience true happiness … and so do we!

We’ve had the great pleasure of watching hundreds of amazing children grow up before our eyes. One such child is Aaron, whom we met in early 2008. We sat at his dining room table with him and his parents and talked about what camp might be like for him. It was clear that Aaron was both excited and nervous. He was sweet and smart and funny. But he was also a whirlwind of energy; he walked in circles around the room, eating fruit and rocking on his heels. At camp that summer, he was well-liked and a willing participant in all activities, but was quiet and often “in his own world”. He frequently paced at meals and we regularly found him on his own at the salad bar. At the end of the session, we didn’t know what, if any, impact camp had on his life.

Shortly after the summer was over, we heard from Aaron’s mom that both family and teachers were amazed at the social strides he’d made. The following summer, when Aaron got off the bus at camp, we almost didn’t recognize him. He’d grown a few inches and seemed more comfortable. He looked us in the eye and smiled when he greeted us. He seemed thrilled to be back at camp. We ran into him less at the salad bar and he was much more engaged with his peers. He left that summer talking about the great friends he’d made.

The summer of 2010 was even better and 2011 better still. Aaron had found a second home at Akeela. We feel deeply connected to Aaron and his family and feel immensely lucky to be a part of his life. He recently shared with us a letter he wrote to his camp counselors. It was the most well-written, heart-felt letters we’ve ever read. People wonder if our campers have the ability to connect with others … if they really care about each other. As we read Aaron’s letter, we were overwhelmed with his ability to articulate his admiration, respect and gratitude for these young men with whom he lived for a few weeks.

Knowing that we played even the slightest role in Aaron’s growth and development as a person brings us great pride and fulfillment. Aaron is one of many children who have helped us grow. We owe them all a letter of appreciation for allowing us to call this our job. Maybe Aaron will help us write that letter.

— Debbie and Eric