Based on what one sees in the news every day, it seems obvious that the world desperately needs more compassion and empathy. Churches burn, young people are shot and people remain homeless and unseen on the sides of our roads and at our borders. Having the ability to understand and share the feelings of others is vital to building a better world.
One way of generating empathy is by interacting with people who are different.
“We See Things Differently” is the catch phrase for the Autism Society’s April Autism Awareness Month campaign. The Maryland-based nonprofit seeks to educate the public about people living with autism.
People with autism often don’t experience the typical gave-and-take of social interaction, according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, (DSM-V), the authoritative guidebook used for the diagnosis of mental disorders. At the same time, their way of interacting with the world often generates empathy in so-called “neurotypical” people, or those who are not on the autism spectrum.
Autism Spectrum Disorder (ASD) is characterized by a number of criteria outlined over several pages in the DSM-V. ASD is hard to characterize in a single set of behaviors.
Orlee Krass, Tikvah Program Director at Camp Ramah in the Poconos explained the wide variety of experiences of people with autism and said, “If you met one person with autism, you’ve [only] met one person with autism.”
Living with children with autism is often different from life with neurotypical children. As Jennifer Bishop of Baltimore, a parent of a child with autism said, “Having a child with a disability can make it impossible to do simple things most people take for granted—a walk in the park, a trip to the grocery store, a visit to friends or family, a decent night’s sleep.”
On the other hand, Sharon Cohen of Owings Mills describes the interactions she has witnessed surrounding her daughter, who also has autism.
“There was a kid that was kind of nasty to every kid in the classroom and [my daughter] was stuck up at the top of the slide and [the girl] says ‘Oh, I’ll get her,’ and she runs up to go get her. Even the kids that weren’t nice to begin with, were super nice to her,” she said.
“It’s essentially a neurological disorder that affects social communication,” said Desmond M. Kaplan, MD, FAPA board certified in psychiatry, board certified in behavioral neurology and neuropsychiatry, board certified in child, adolescent and adult psychiatry (Israel). Kaplan treats children, adolescents and adults with and without autism.
Approximately 50 percent of individuals with autism also have intellectual disabilities, Kaplan said, and about 30 percent have seizure disorders. ADHD, depression, anxiety and other ment
al health disorders also occur in individuals with autism at higher rates than the general population.
“With the more impaired individuals on the spectrum…those with less communication skills and lower IQ,” Kaplan said, “there can be behavioral problems such as aggression and self-injury [and] tantruming, which is often related to individuals on the spectrum being frustrated. They’re frustrated that they are not being understood and they’re frustrated that they cannot understand the world because they think differently.”
The exact causes of autism are still unknown, although doctors have identified a large genetic component. For families with one child with autism, the chances of having another child with autism are significantly higher than for families without a child with autism.
“[Autism] is not caused by immunizations,” Kaplan. said “We know that because when they’ve studied the brain of the fetus in pregnancy of babies that develop autism, the brain is already in some ways different, and immunizations as you know, are not given [in utero]…autism exists before the immunizations.”
Today there are a wide variety of resources for parents with children with autism. One option is the Arrow Center for Education, Tangram in Towson. Principal Mark Rapaport explains the mission of the school is to build independence in children with autism so that they can live successful, full lives on their own.
“Our primary goal is really to develop skills for our kids to be able to succeed and function as much as possible in the community when they get older.”
Tangram works to involve children in the local community as much as possible and to apply the skills they are learning to the outside world.
“If we’re teaching our kids how to manage money, we’re then taking them out into the community to purchase stuff,” said Rapaport.
The interaction of Tangram students with the community has led to positive growth on both sides. For the children, they are able to learn communication and work skills in the wider world. While the community has become more accepting and knowledgeable about people with autism.
“The community is opening their doors,” said Jennifer Drucker of Parkton, parent of a Tangram student. Her daughter received real work experience clearing tabletops at a nearby bowling alley and vacuuming at a local lacrosse store.
“Her opportunities are not just inside the building, and that’s reality,” said Drucker.
Another set of opportunities for children with autism may come as a surprise to some: sleepaway camp.
For Erik Daly, treasurer of the board and chair of the finance committee at The Arc Baltimore, and the parent of a teenager with autism, sleepaway camp “Has been life-changing and we’re so grateful that we found [it.]” The Arc Baltimore supports more than 6,000 children and adults with intellectual disabilities.
Sleepaway camp serves two important functions for Daly. “It provides my son with an opportunity to experience a sleepaway camp environment that most kids his age are also able to experience, surrounded by not only kids that are his peers and have similar situations,” Daly said, “[but] provides all the support he needs to be at a sleepaway camp . [That includes] accommodating his special diet and medication management.”
For children with autism, sleepaway camp provides an opportunity to be a typical kid and to experience the traditional summer fun of sleepaway camp.
At the same time, sleepaway camp offers a much needed break for parents of children with autism.
“It can be labor intensive [to care for a child with special needs],” Daly said, “it’s a respite for parents…it gives us some time off to kind of relax and pull ourselves together and prepare for his return.”
Inclusion sleepaway camps are camps that were originally opened for neurotypical children but have added “inclusion programs” to bring children with autism and other special needs into the camp. These camps have found that welcoming children with special needs has enriched the entire camp.
“What we were surprised to see in the first year—and perhaps shouldn’t have been—was the impact it had on the camp as a whole. Every one of our typical kids thrived. It made our camp more empathetic, more sensitive to others,” said Rabbi Joel Seltzer, executive director of Camp Ramah in the Poconos. Camp Ramah’s program, Yedidim, which is Hebrew for “friends,” was named by the neurotypical campers.
Seltzer recalls a camp play that the oldest campers write and perform each year. One year, they wrote a song that said “Once there were seven age groups, now we are complete [with Yedidim].”
At The Union for Reform Judaism (URJ) Camp Harlam, all campers bunk together and are supported for success at camp. What Lisa David, director of URJ Camp Harlam, has found is that many accommodations for campers with special needs are also useful to neurotypical campers and can help both kinds of campers thrive.
“For example, for some campers, managing the schedule of the day—it’s just a lot with all the transitions,” said David. “So we create these visual schedules that have the routine for waking up in the morning and getting to bed a night. It breaks down what all those steps are, actually has visual images of each of those steps, and we hang them in every single bunk because while that may be useful for some kids, generally any kid could benefit from something like that.”
While many programs like Tangram, sleepaway camps and professionals like Kaplan are available, sometimes finding the right professional and the right treatment can be difficult for parents.
“It’s still very hard and confusing to find the right medical professionals. It’s been a lot of trial and error, not only to find the right medical professionals but finding the right types of treatments and the right types of medications,” said Daly.
However, Daly said, the public school system offers a wealth of resources for parents to find the right help for their children.
“I would encourage parents to certainly tap into those resources as early as possible through their county school system or through places like Kennedy Krieger Institute,” Daly said.
Drucker, who lived in New York before moving with her daughter to Maryland, said that Maryland’s autism program is outstanding.
“Coming from New York, which has a very strong autism program, a solid autism program, I was very excited, in fact, surprisingly excited to find that… the programs that were offered to me here were exceptional,” Drucker said.
While Drucker said she needed to take a lawyer with her to fight for her daughter’s rights at every Independent Educational Plan (IEP) meeting in New York, she said that in Maryland, “If your child needs services, they’re going to help you. They’re going to give you the best.”
Giving the best care at Tangram is Rapaport’s goal. For Rapaport, his Judaism impacts his efforts to help students with autism thrive.
“It’s really the whole idea about bettering the whole person,” Rapaport said. “Helping all regardless of where they are and really giving tzedakah. Everything we do here revolves around those values.”
Treating each person with respect is an essential tenant of Judaism. Helping everyone wherever they are and not expecting or requiring them to be someone else is a core part of respecting others.
Respect comes in many forms. For Drucker, respect of her role as a parent of a child with autism helped guide her into becoming the best parent and provider possible.
“The best thing about Tangram is that they don’t just cater to the student. I don’t have my special education degree. I don’t know how to raise a child with autism. I’m a single mom. What the Tangram school does, they don’t just take care of the student, they take care of the family. We need that support. They need to pass the power on to the parents.”