As autism diagnoses climb, families in South Jersey are coming together for support and solutions.
When Isabelle Mosca’s son was diagnosed with autism in 2002, she had never met another parent with an autistic child. Faced with an overwhelming amount of information from medical professionals and often incorrect Internet research, she knew the support of other families facing a similar diagnosis would make a difference in understanding the disorder and her son’s behavior. The support system in her area was lacking, so Mosca and her husband Ken created their own group called Families for Autistic Children. The Moscas advertised the group, making phone calls and landing a front page story in a local newspaper, and 60 people attended the first meeting that same year. Today, the group is known as Faces 4 Autism and is 500 families strong. Based in Ventnor, the group serves Atlantic, Cape May, Cumberland and Ocean counties.
It’s no mystery why support groups like Faces 4 Autism are gaining members exponentially. Autism is the fastest-growing serious developmental disability in the U.S., costing the nation $137 billion per year, yet receiving less than five percent of the research funding of many less prevalent childhood diseases, according to Autism Speaks, the world’s leading autism science and advocacy organization. The Centers for Disease Control reports that 1 in 88 children nationwide is believed to have autism or a related disorder. New Jersey has the second-highest diagnosis rate, 1 in 49, behind only Utah. And for boys in New Jersey, the rate is 1 in 29.
Most believe the rise in rates is not caused by there being more autistic children, but instead by the fact that medical professionals are increasingly aware of the symptoms and can make a more educated diagnosis. Autism spectrum disorders (ASDs) are neurodevelopmental disorders that are characterized by impairments in social interaction, communication and behavior. Individuals may have a restricted range of interests or engage in repetitive behaviors. These signs are usually evident before age 3.
“It is an epidemic that has no bias with respect to race and affects all communities. It’s more important than ever for us to share what we know,” says Jennifer Hoheisel, president of the Autism Society of Southwest New Jersey (formerly PACT). The organization began in 1993 as a place for parents to learn from each other and create social opportunities for their families to enjoy. The group has grown to some 400 families from Burlington, Camden, Gloucester and Mercer counties.
Both of these groups formed to support families in the community coping with an autism diagnosis. Faces 4 Autism’s mission is the same now as it was in 2002. “Many parents have that initial ‘deer-in-headlights look’ when their child is diagnosed,” Mosca says. “We’ve all been there and we want to make it easier by bringing awareness to mothers, fathers, siblings and grandparents.” Faces 4 Autism hosts monthly support group meetings as a chance to practice good and meaningful communication, and there is no fee for membership.
While Mosca is the executive director of Faces 4 Autism, she is a mother first, and the group has made an impact on her knowledge of autism and her son’s development. “You can read everything online and feel as though you’re an expert. But meeting with other parents and professionals and being able to compare notes was profound,” she says. “As families facing the same experience, we can instantly understand each other, and it’s been so gratifying to watch all of the children grow up.” She says the group recently celebrated the college graduation of one of its first member’s child.
Hoheisel agrees, adding, “Being a part of the group has been tremendous. To listen to the challenges of other mothers and see what resources they found helpful gave me a sense of what to hope for in my own son’s development.” Social opportunities are another beneficial aspect of the support groups. “As families, we are able to plan events in the community like attending baseball games, visiting the aquarium, pumpkin picking or holiday activities,” she says. Parents are able to enjoy these events knowing that other parents in the group will be understanding of the behavior any given child might display, making them feel more comfortable.
April is Autism Awareness Month, and when asked how people can show their support for the disorder—even if they are not directly impacted—neither Mosca nor Hoheisel lists donations as the priority. “I would encourage people to become educated, just on the basic facts of ASDs,” says Hoheisel. “If the general public has some basic knowledge, it may help them to be more sensitive and can go a long way in terms of social interaction if you are dealing with someone who has autism.”
In fact, Hoheisel, who is an associate professor at Camden County College, helps organize an educational lecture series at the college every semester. The program is open to the public and covers a wide range of topics such as transitioning adults with autism to residential independence or using social media to expand independence. But it’s not just for families impacted directly by autism. “Teachers, EMTs, school nurses—anyone who may be put into a situation where they are interacting with an autistic person of any age—would benefit from these sessions. Some behaviors can come across as rude—such as not making eye contact—but are in fact symptoms of autism,” she says. “We can teach strategies so these interactions are more likely to be successful.”
There are things South Jersey residents can do on a daily basis, too. Mosca says, “Something that I find so powerful in terms of feeling the support around the community is when I see an autism awareness magnet on a car, or I see someone wearing a T-shirt. It may seem small, but it’s a simple message that shows other people you care.”
To find out how you can help raise awareness in the community, contact any of these resources below:
THE AUTISM SOCIETY OF SW NEW JERSEY
FACES 4 AUTISM
AUTISM FAMILY SERVICES OF NEW JERSEY
Bubbles 4 Autism
On April 22, people around the world will participate in an event called “Bubbles 4 Autism.” Inspired by the Cherokee custom of whispering a wish to a butterfly and sending it to the sky so God would answer their prayers, Bubbles 4 Autism sends hope and wishes in a whimsical way. Started by South Jersey’s Faces 4 Autism, this event was first held at Ventnor Elementary School 10 years ago, and in 2012, more than 57,000 people blew bubbles for the cause.
Isabelle Mosca says the idea was inspired by her son, Kyle, who found that he and his classmates had a mutual love of blowing bubbles. “Instead of kids focusing on their differences and feeling excluded because of their autism, this is the type of activity that anyone can do,” she says. “As it has grown more popular, schools are adding it to their calendars and designing curriculum around it. It’s so touching to see an open discussion about autism.”
Mosca can’t help but become emotional when she hears kids wish on their bubbles, saying “We love everyone with autism.” She says, “As a parent, it’s just incredible to hear and know that there are good intentions being sent our way by complete strangers who truly care.” This year, the event may even make it into the Guinness Book of World Records. Mosca encourages schools, businesses and other organizations to take a break from their day and show support for the cause. —Liz Hunter.
Visit Faces4Autism.org for an official participation form and blow Bubbles 4 Autism on April 22 at 1:15 p.m.
Published (and copyrighted) in South Jersey Magazine, Volume 10, Issue 1 (April, 2013).
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