Many of you probably saw this article on the front page of last Monday’s New York Times. It’s great to see any story about Asperger’s getting such prominent real estate in “The Gray Lady”. This one in particular brings attention to a important topic: young adults with Asperger’s (or NLD or any others on the “high-functioning” end of the autism spectrum) navigating romantic relationships.
So much of what we do at Camp Akeela is to help our campers develop and practice appropriate social skills. For many of our kids, Akeela is the one place in their lives where they feel truly accepted by their peers, which allows them to form uniquely meaningful friendships and connections to others. When we first started the camp in 2008, our oldest campers were 16 years old – completing 9th grade. The following summer, we had so much demand for teenagers that we expanded the program to include boys and girls finishing 10th grade. We’ve found that camp has taken on even more significance in the lives of our campers as they move through adolescence and the world gets even more complicated socially.
It quickly became evident to us that we could do even more to help prepare these amazing kids for adulthood. Towards that end, we started a new program last summer, called Beyond Akeela. It’s for boys and girls finishing 11th and 12th grades and is essentially a hybrid of a traditional camp CIT program and a life-skills training experience. We had 18 participants in Beyond Akeela’s inaugural summer and it was a huge success. In addition to having an amazing summer at camp, they also came away with concrete skills and experience in the areas of job readiness, managing money, cooking & nutrition, college options and appropriate peer relationships. They toured colleges, attended cooking and banking classes, volunteered in a variety of community service efforts, organized and led in-camp activities, discussed relationships and sexuality, went shopping and did their own laundry, challenged themselves on outdoor adventure trips, and much more. The program culminated in a 4-day trip on which they put all their newfound skills to work while living independently (with staff supervision!) in condominiums.
Overall, it was a huge success and a program we look forward to offering for many years to come. Reading the New York Times article last week allowed us to reflect on and be thankful for the role we may play in helping a very deserving group of people find what we all seek in life: loving, fulfilling and reciprocal relationships with people who value and respect us.
In addition to being the camp director of Camp Akeela and having a doctorate in clinical psychology, I’m also training to become a certified sleep consultant! I’ve been thinking a great deal about children and sleep and have found it interesting to focus on children on the Autism spectrum, specifically those with Asperger’s Syndrome (AS).
It is estimated that between 40% and 80% of all children on the spectrum suffer from sleep problems (falling asleep, staying asleep and early waking). Scientists are unsure exactly what causes such a high incidence of sleep challenges for kids on the Autism spectrum but we believe that a big part of the issues stem from struggles with integrating our often over-stimulating world.
Our observations from Camp Akeela, where most of our campers have a diagnosis of AS or NLD, are that kids on the spectrum have to work really hard all the time to maintain a level of “homeostasis” or feeling good. We often say that it’s as if our campers have to walk around the world on a daily basis performing their every-day tasks while simultaneously doing long division in their heads. Living in a “neuro-typical” world is hard work. In order for them to be at their best, we have found that our campers need to be well-rested.
Here are a few of our suggestions:
Like all children, those with AS need to exercise daily to stay healthy. In order to do this and get to sleep at a reasonable hour, kids should try to exercise at least 2-4 hours before trying to get to sleep.
Children with AS most likely require an extended amount of time to calm down and become sleepy. At least 30 to 45 minutes should be put aside in the child’s daily schedule to allow for this…which means that homework may need to get done earlier or saved for the morning.
Research shows that dim lights while getting ready for bed create an increase in melatonin (the “sleepy hormone” in our bodies). A light dimmer in the child’s room might be well-worth the investment.
Children on the spectrum need a great deal of predictability in their lives…bedtime routines are no exception. Children benefit from a “sleep rules” or “sleep schedule” chart in their room that is age appropriate and should include the evening schedule from showering/taking a bath, to dimming lights to putting on PJs to reading to turning off the light and going to sleep.
Children on the spectrum often struggle with sensory integration. Many of our campers have found the use of weighted blankets to be helpful. Others have preferred to sleep on the floor rather than a “squishy” mattress.
Although it feels counter-intuitive, many kids who are having trouble falling or staying asleep at night are often over-tired and require an earlier bedtime. It is not unheard of to have school-aged children on the spectrum in bed with the lights off between 7:30 and 8pm.
We absolutely love the NBC drama ‘Parenthood’, particularly for it’s portrayal of Max, a young teenager with Asperger’s. Max – with all of his endearing quirks, sharp wit, affinity for routines and social gaffes — reminds us so much of our campers at Camp Akeela. This is the population that we’ve dedicated our professional lives to, and that brings us so much joy, laughter and pride each summer. It’s been a lot of fun seeing Asperger’s emerge into the public’s consciousness over the last few years, in part due to ‘Parenthood’. When we describe the mission of Camp Akeela to people we meet, Max is often a point-of-reference for them.
The show has done a great job showing Max and his family in a realistic light. Yes, he can be really frustrating. He sometimes has what we call “meltdowns” and has had to work really hard to control certain behaviors that were getting him in trouble at school. He often puts his foot in his mouth, or worse, hurts the feelings of someone who loves him.
It’s clearly not always easy being a parent or sibling in Max’s home. But the overwhelming picture we get of Max is how sweet and smart and funny and loveable he is. This affectionate but unsentimental portrait of Max immediately convinced us that someone writing for the show knows what he/she is talking about. Indeed, executive producer Jason Katims has a son with Asperger’s Syndrome.
Here is a link to an interview Jason Katims did for the Washington Post blog, “On Parenting”.
If you don’t already watch the show, check it out!
We’re so excited to share this blog with you. We will mostly be writing about what we know best: Asperger’s (and NLD, PDD-NOS, …) and summer camp. But we’ll also share our thoughts about general child development and parenting, along with specific news from Camp Akeela and whatever else catches our interest in the world!