Autism Spectrum Disorders

Autism Spectrum Disorders and Mental Health Diagnoses

NPR published an article this week about the prevalence of Mental Health diagnoses in those with an Autism diagnosis (http://www.npr.org/sections/health-shots/2017/10/01/554461501/many-young-adults-with-autism-also-have-mental-health-issues).  While it is not shocking to read that many young adults who have a diagnosis of ASD also have a co-morbid (additional) mental health diagnosis, I was somewhat surprised to read that youth on the spectrum are more than FIVE times likely to have an additional diagnosis such as depression, anxiety or ADHD.  (The article states that the study they are referencing found that 52% of young adults with Autism also have a mental health diagnosis.)

The author quotes a young man on the spectrum who states, “Relationships are so much harder” for those on the spectrum and living in a world that is often fast-paced and filled with nuanced communication can often feel very lonely.  We hear this from our own campers all the time.  Depression and anxiety often stem from feeling disconnected and different.  When our campers live in a world that doesn’t feel like it “fits”, they often feel “less than”, lowering self-esteem and pride.  We feel lucky to be a part of a community that enables our campers (and staff) to feel like they are part of something bigger than themselves, a community where they feel like they belong and aren’t alone.  We witness a great sense of relief in our campers during the summer because they are less anxious and happier being surrounded by friends.

The article also points out how difficult periods of transition are for youth with an ASD diagnosis.  The author writes:

“Transition for youth with autism is a very challenging process,” Davidson says. “It is doable, but it takes a lot of preparation and a lot of time on the part of the families, on the part of the patient and on the part of the providers. The earlier one starts, the better.”

“Research literature suggests that it’s good to start learning daily living skills, such as laundry, cooking, bathing alone and similar chores, around 12 to 14 years old, Davidson says. But she believes that should start as early as possible, depending on a child’s intellectual, social and mental health disabilities.”

“Youth on the autism spectrum may need repetitive modeling and experiences so that they get those skills down and become as independent as possible,” Davidson says. Too many families, she says, do tasks for their adolescents long past when the teen could do them on their own. Other youth continue to need support for what might seem like basic tasks, so parents and care providers have to work to learn the boundaries and abilities for each person on the spectrum.”

Autism Spectrum DisordersOf course, we know that sleep-away summer camps in general, and Camp Akeela in particular, provide precisely the opportunities for independence that this article suggests are necessary.  Being away from home in a safe environment, like camp, allows campers to practice the skills necessary for them to be successful later on in their young adulthood.


Holidays – Autism Spectrum

Is It Really “The Most Wonderful Time of the Year?”

Eric and I took our girls to see the “holiday spectacular” at the Comcast Center here in Philadelphia. It’s a really neat film that they project onto an enormous LED screen. The 15-minute show ends with a sing-a-long of “It’s the Most Wonderful Time of the Year”. As we were walking away, Eric turned to me and asked, “Is it”? For many families, the holidays are not easy. In fact, they are the most STRESSFUL times of the year! Holidays can sometimes mean arguments with family members who are impatient or “stuck” in traditions that don’t work for every person in the family. It can mean sitting and waiting in airports or train stations and experiencing what even the most patient and “zen” person finds unbearable – changes in plans and being out of control. Sitting at long meals where conversations may be boring to some or insulting to others. Many of us experience these struggles but for families that include individuals on the Autism Spectrum or who struggle socially or who have NLD, these are even more difficult.

While we hope your holidays are filled with lots of yummy food, quiet and relaxing time with family and friends and reflection of the many gifts in your life, we know that may not always be possible. Here are some suggestions for how to increase the likelihood that everyone is set up for more success:

• Preview any schedule changes in advance (at least a few days) and give the members of your family a printed schedule/itinerary….with the warning that sometimes things like traffic or weather force us to change plans.

• Try to stick to your normal routine as much as possible leading up to the holiday. For example, even when school is closed for a few days or weeks, try to keep wake-up, bed-time, and meal-times as close to schedule as possible.

• Maintain normal school-week expectations when possible as well. (e.g.: limiting screen time, household responsibilities….etc.)

• Make sure your child will find something familiar to eat at the holiday meal so that he knows he is valued and won’t be hungry. (This may mean bringing along a container of his favorite food.)

• Bring along a favorite game so that your child can invite other family members/friends to join in activity she feels confident playing.

• Bring along an activity your child can do in solitude in case he needs some down time or just wants some time away from the larger crowd.

• Take some deep breaths, listen to music – do whatever makes you feel calm and at your best and try to be ok when things don’t turn out as planned….they never do!

Happy Holidays and Happy New Year!
-Debbie


Autism Spectrum Camp Staff: Part 1

Autism Spectrum Camp Directors:

When we tell people that we’re summer camp directors, one of the most common responses is to ask us, “What do you do the rest of the year?” They often have a hard time believing that our 7-week summer camp translates into a more-than-full-time job for 5 of us! Blayne and his team work at camp to maintain and upgrade our beautiful camp facilities. Each year, he has at least one large construction project (e.g. new camper cabins, the Lodge, the camp office) and a variety of smaller maintenance tasks that keep them very busy!

Meanwhile, Debbie, Eric, Kevin and Dave work in an office just outside Philadelphia. Together, we make sure that every summer at Akeela is the best it can be. That includes hiring the most incredible summer camp staff in the country – no small task given the size of our staff (over 100) and our extremely high standards (many inquiries and interviews for each available position). We also work hard to ensure that every camper who attends Akeela is a great fit. To that end, we spend many hours getting to know all prospective campers and their families, including speaking with three non family members for each applicant. Of course, there is also a lot of planning that goes into the camp program, from the traditional camp activities to trips and special events. This year, program planning is even more intense as we’re launching Camp Akeela in Wisconsin and totally revamping Beyond Akeela!

Another large component of our off-season time is dedicated to professional development. Camp directors are first and foremost educators and child development specialists. We’re also HR directors, supervisors and leaders who get to train and inspire staff members to profoundly change lives of the children. Moreover, we manage complex operations on large properties with food service, water supplies, environmental responsibilities and a host of other factors. The more we learn and share in these areas, the better we can be at delivering our mission: to provide our campers with the most incredible, life-changing summer experience on the planet. For that reason, all of us are actively engaged in attending, volunteering and even presenting at educational conferences organized by the American Camp Association (ACA).
In addition to our involvement in the ACA, we are very fortunate to work closely with approximately fifteen other sets of camp directors. Most of these camps are in the Northeast: Maine, New Hampshire, Vermont, Massachusetts and New York. A few are in the Midwest: Camp Akeela in Wisconsin and Lake of the Woods and Greenwoods Camps in Michigan. Together, we make up a family of camps called CampGroup. As an organization, we share core values of human development, excellence, building community and industry leadership. That manifests in a number of ways, including regular gatherings to support each others’ camps and share best practices.

Be sure to check back next week for part 2


Aspergers and Technology

Utilizing Modern Technology to Improve Self-Awareness and Self-Advocacy

I recently had the pleasure of attending a conference at Adelphi University on Long Island at which world renown clinical psychologist and Aspergers expert Dr. Tony Attwood presented on the topic of emotional regulation in children and early adolescents. Dr. Attwood covered a variety of topics from the psychological reaction to “being different” to having and dealing with various levels of anxiety.

Being a millennial who gets entranced by the all of the latest technology (have you seen the trailer for the Nintendo Switch?! It’s amazing! Check it out here: https://www.youtube.com/watch?v=f5uik5fgIaI), the topic that he discussed that caught my eye the most was the use of modern technologies to help children more easily recognize when they feel upset.
The Fitbit is an amazing tool that can not only help children and adults keep track of their health, such as how many steps they are taking or calories they are burning in a day, but newer Fitbits and other “smart watches” also have built in heartrate monitors that are amazingly useful towards improving self-awareness. For many of our campers, it is difficult for them to tell when they are getting upset, and incidents usually come about without much warning. One of the first and most basic warning signs of someone getting upset is the increase in heartrate, and with a piece of technological assistance like this one, children can check their heartrate right on their wrist to see if it is higher than it normally should be. This may indicate that they are beginning to feel upset, and they can advocate for themselves that they proactively need time to cool down. After some time, children may be able to recognize other warning signs their body is giving them that are paired with the increased heartrate – increased muscle tension, hot feeling in the neck or face, clenching of the jaw, etc. – and this feeling could become more recognizable and in turn easier to prevent.
For parents, one of the benefits of this technology is that it often comes with a smartphone app that tracks the data. If a child’s Fitbit is linked to a parent’s smartphone, the parent can monitor what times of day they see a drastic spike in heartrate. If a child’s heartrate continuously spikes around noon, it is likely that the child has some anxiety about the lunch room, or if the heartrate spikes during third period math class, that child might have some underlying issue with math that they cannot or have not yet verbalized to a parent. There is a classic scenario of a parent asking their child how their day at school went, only to get the blunt response of, “It was good.” By using this technology parents may be able to be more attune to difficulties at school which will in turn make the child’s school experience more positive.

Dr. Attwood has been the keynote speaker at events around the world and he has authored or co-authored multiple books and articles about Aspergers. Visit http://www.tonyattwood.com.au/ for more information.


Upcoming Conferences

Our assistant director, Kevin Trimble, will be representing Camp Akeela at these two upcoming conferences:

On October 25, in Boston, is AANE’s Asperger Syndrome Connections 2014. This year’s conference, titled “Practical Perspectives, Positive Lives” features speakers Simon Baron-Cohen, Winnie Dunn and Michael Forbes Wilcox.

On November 2, Kevin will be attending the ASPEN Fall Conference in Iselin, New Jersey. After morning presentations from Alex Plank (speaking on autism and the media) and Dennis Debbaudt (ASD and independence), seven afternoon sessions will address topics from dating and relationships to psychopharmacology.

If you’re planning to attend either of these conferences, make sure to stop by the Camp Akeela table to say hello to Kevin. If you weren’t planning to attend, we encourage you to take a look a these two excellent organizations: AANE and ASPEN.


Empathy

A mom from Akeela Family Camp recently posted a research study about individuals with Asperger’s Syndrome and empathy. (The 2009 study by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne is referenced here, here and elsewhere). While the research is a few years old, we believe it is extremely relevant.

We have always said that the notion that our campers (and those like them) lack empathy is absolutely bogus. We have seen time and time again that our campers are extremely caring individuals who are capable of understanding the emotions of others and showing them compassion. There are times at camp when we believe that a typically developing child would not be as insightful in an emotional moment as our children are. We had a 11-year-old camper this past summer who made it his goal to help support all of the campers he met who were feeling homesick. There were many times when we would see this boy with his arm around a peer and overhear him saying something like, “It’s OK to feel sad; I felt sad my first summer too”.

Our experience is reflective of the Markrams’ research conclusions: that those with ASD are actually hypersensitive to the emotional experiences of those around them. That “over-experiencing” of others’ emotions can be very overwhelming and can create the individual to shut down or escape into their own world.

We believe it is imperative that we not assume how others experience the world. We’ve often told parents that our kids work harder than most performing everyday tasks; it’s as if they are trying to interact with environmental stimuli while simultaneously performing long division at hearing background static. It’s hard to do so many things at once. When our campers “shut down” or retreat into themselves for a few minutes, we don’t assume they are disinterested. Instead, we suspect they are taking a moment to organize their experience. Although our campers do not always know how to express themselves in the exact ways that society expects, they deserve to be recognized as people filled with genuine feelings, rich emotional lives and yes, empathy.

– Debbie and Eric


John Elder Robison, Autism Speaks and the Akeela Community

John Elder Robison made some waves this week when he publicly resigned from his position on the Science and Treatment Board of Autism Speaks.  (See his blog about this decision and his letter of resignation here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html.)  After reading this, I had many thoughts about our campers and our community.

I can only imagine what it feels like to be labeled as “disabled”.  In our six summers running Akeela, I have learned that our campers are extremely “abled” and have many talents to celebrate.  Do our campers (and their families) struggle?  Are there difficult moments, days, weeks, years?  Are there challenges that seem small and others that are life-altering and terrible scary?  Yes – of course.  However, in order for our campers to reach their enormous potential, they must be shown that they are capable of achieving their goals.

What has been most profound for me, as a director at Camp Akeela, has been watching how powerful a community can be.  Our campers, who are often left on the outside (by individual peers, by society at large, or by institutions that liken them to the “gravely ill”) thrive when they are part of a community – when they truly feel accepted and valued for who they are.  I wish that more people could see our campers at Akeela so that they could witness their successes.  Of course I support organizations that help advance science and look towards treatments that can help make the lives of those living with autism easier/better/happier.  I just wish those same organizations were also honoring and supporting the communities which celebrate the same individuals.

I want to honor JER’s leadership as he champions the rights of the ASD community.  He is certainly an example of the amazing contributions those on the spectrum make to our larger world community.

– Debbie


Asperger's Assoc. of NE Response to Newtown Tragedy

Like the rest of the country, we watched in horror as details emerged from Sandy Hook Elementary School last Friday. As parents and childcare professionals, this represents all of our worst nightmares come true. Our thoughts go out to all of the families who were most directly affected by the events in Newtown.

At this point, there is some speculation that the suspect had been diagnosed with Asperger’s Syndrome. We hope to blog later this week with our thoughts about that. In the meantime, we wanted to repost a statement from our friends at the Asperger’s Association of New England:

logo_aaneAANE Response to Connecticut Tragedy

— Eric and Debbie Sasson
Directors, Camp Akeela


Holiday Family Time with a Child with Special Needs

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The holidays are a stressful time for everyone. There are gifts to buy, meals to cook and family members to visit. The joy that we all look forward to and the warm family moments around the fireplace sharing memories of seasons past are often fantasies that don’t work out the way we plan. And then, the joy becomes stress and resentment. All of this is true for most families but it is more common for families who have a child who struggles socially (including those with Asperger’s, NLD / NVLD).

Holidays bring about change and change is hard! At Camp Akeela, we do everything we can to prepare our campers for changes in routine. We try to give them as much notice as possible. (Rainy day plans are more difficult as the weather in Vermont is not always predictable!) Schedule changes are discussed and printed. We allow some time for our kids to express disappointment and frustration with any changes but then we move on and get them involved in an activity that they enjoy. When we can anticipate the events that make our children anxious, we can help alleviate (though not eliminate) that anxiety and perhaps allow for smoother sailing.

Our campers really enjoy helping others and they get very involved in our community service days at camp. The holidays are a wonderful time to remind our children of how much they have to be thankful for in their lives and to share some of that with others. Perhaps your child can choose a local charity that he is interested in supporting and can do some research on how he can support that cause. Then, the whole family can get involved in working together to give back. This is a wonderful way to spend family time and to teach children empathy. (It’s also a great way to add structure to a week without school!)

Many families have told us that they dread holidays … they spend family gatherings worrying that their child will do or say something that is embarrassing, inappropriate or rude, that he may have a complete meltdown and that everyone else will judge or give unsolicited (and unhelpful) advice. If we plan for these potential pitfalls and even predict them for key family members, the holiday may feel more relaxed and enjoyable.

Here are some suggestions for ways to make your holiday and family time run smoothly:

  • Preview any schedule changes a few days in advance and give your child a printed plan or itinerary.
  • Try to keep her routine as close to normal as possible. For example, for the week without school, try to keep wakeup, meals and bedtime as close to a typical day as possible. Maintain normal school-week expectations, when possible (e.g. limits on screen time, household responsibilities, etc.)
  • Make sure your child will find something familiar to eat at big holiday meals so that you know that he will eat something and feel valued
  • Bring along your child’s favorite game or an activity he can play with others at family gatherings
  • Bring along something she can do independently in case she does not want to participate in the group activities or conversations
  • Try to relax and enjoy your family. Things may not go exactly as planned but that’s ok … holidays never do!

— Debbie


Asperger's and Bullying: Summer Camp Can Help!

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A mother of a Camp Akeela camper recently sent us the link to a New York Times article about school bullying: “School Bullies Prey on Children with Austism”. The author explains how kids on the spectrum, and other quirky children – those who learn differently or have unusual mannerisms or who don’t share interests with most of their classmates – are much more vulnerable to teasing and bullying at school. Of course, as directors of a camp for kids with Aspergers and NLD, this wasn’t news to us. Many of our Akeela campers feel that school represents a social world that can be fast-paced, cruel and unforgiving. They tell us that lunch and recess (and often gym class) are the hardest times of day. During class, although they may get funny looks for shouting out the right answers or not wearing the most up-to-date fashions, at least a teacher is there to intercede. In the cafeteria, they’re expected to navigate social situations on their own. For our campers, this can be extremely difficult. Where should they sit? Who can they talk to? What should they talk about?

At our final campfire on the last night of the camp session, we take some time to reflect upon the time we’ve spent together as a community. We talk about all of the campers’ wonderful accomplishments: becoming more independent, leaving home for three and a half weeks, going without video games!, cleaning their cabins every morning, making new friends, trying new activities and pushing themselves to do things out of their comfort zone. We encourage them to remember how accepted and loved they feel in that moment, the final night of camp. We tell them that we know how hard school can be at times and that not everyone they encounter will appreciate them for who they are. We tell them, “When you have a bad day, when someone is unkind, close your eyes and imagine you’re back on Miller Pond surrounded by friends who really care about you.”

As camp professionals, we believe that all children need to have experiences away from home where they feel successful, where they know that they are likable, where they are accepted for who they are. For our campers, that’s even more true. Children on the autism spectrum need to have experiences in safe environments where they can learn and grow, including learning how to fail. Those experiences give them the confidence and skills to manage the “real world”, where people can be so unkind.

– Debbie, Eric and Jaynie