They are bright and talented students, warm and loving friends, and with support and acceptance can be fully integrated and productive members of society. They are the individuals on the autism spectrum, and they have a voice in Salem.
That was the message sent on World Autism Awareness Day, celebrated every year on April 2 since it was instituted by the United Nations in 1989. In Salem, celebrations included an Autism Awareness walk around Salem Common, spearheaded by Parents United of Salem and the No Place for Hate Committee.
“The response to the walk, as well as the Autism Awareness Fair that will be held on the Common this Saturday, has been overwhelming,” said Leanne Schild, one of the vice presidents of Parents United of Salem and the mother of an autistic son, Alex, now 7. “By promoting awareness, we teach people to have compassion for those who act different and make it easier for parents and kids to be open and honest about autism.”
Alex was diagnosed at age 2, after Schild noticed some differences between Alex’s development and that of his twin sister, Maria.
Though according to the Centers for Disease Control, as many as one in 88 children are diagnosed with autism every year, much is still unknown about the condition. Individuals on the autism spectrum have different or heightened perceptions of certain sounds and textures, which can result in behaviors that others do not recognize or characterize as abnormal.
Though some individuals on the autism spectrum never attain independence or develop full communication, others – particularly those who receive extensive early intervention, and those fortunate enough to find love and acceptance – go on to lead full lives. Famous people on the autism spectrum include actress Darryl Hannah and Temple Grandin, an animal-rights advocate and designer of ethical cattle slaughterhouses. Grandin was portrayed in an HBO film by Claire Danes.
This is the second year that Parents United of Salem has sponsored an autism walk. Last December, they also sponsored the first ever Festivus 5K, which drew 500 walkers and raised approximately $10,000 for The Autism Society.
“My son, Trevor, was diagnosed at age 5,” said Cindy Johnson, who marched in the walk and was one of the coordinators of the Festivus 5K. “He had difficulty making eye contact and a hard time talking to his peers. I remember having him in the pediatrician’s office asking if he was just a shy child or if there was something more, when he saw a ripped piece of paper on the floor. He looked at it and said, ‘Mom, that’s Idaho!’”
Like many on the autism spectrum, Trevor Johnson exhibited narrow and deep interests in a number of highly technical subjects at an early age. But unlike many, he always found a loving and accepting community.
“Trevor went through a phase where he was very into studying transit maps,” Johnson said. “All our friends, family members, and Trevor’s friends, whenever they went on a trip, would bring him back transit maps of Paris and England. People have embraced our family with such kindness.”
Nonetheless, great strides must still be made, both in the attitudes of people who are not aware of the needs of those on the autism spectrum, and in the services made available to them.
“You definitely have to be a warrior parent,” Johnson said. “There’s a level of complexity that comes with raising any child, and it’s compounded when you have to fight to make sure that schools are providing services, that the help is actually getting to your child.”
Even more pervasive, however, is the tendency to marginalize those on the autism spectrum as sufferers from a disease. This is a charge that has even been leveled against one of the largest autism charities in the nation, Autism Speaks, which coined the “Light it up Blue” program and which autism advocates say places undue emphasis on finding a “cure” for what many believe is a valuable and intrinsic part of their personalities.
“To me, the blue lights and World Autism Awareness Day are bigger than any one organization,” Schild said. “They are about increasing acceptance and improving the quality of life for those on the autism spectrum.”
Many of the solutions advocated by adults on the autism spectrum who joined the walk are changes in disabilities and law enforcement procedures that would benefit both autistic individuals and the community at large.
“One of the biggest problems is the difficulty autistic people have in applying for disability benefits under the ADA,” said Sarah Chan-Aldebol, 25, who lives in Salem. “It’s not like a broken leg. You can’t always see it. But it completely affects the way you interact with the world.”
After experiencing a lack of understanding from peers, Chan-Aldebol was homeschooled before attaining a degree in sociology from UMass-Lowell.
“I was lucky in that I got early intervention. Not many in my generation did,” Chan-Aldebol said. “Even today, autism can be presented in TV ads as something that is wrong with kids, that parents complain about. The key is being supportive of kids.”
Ryan Tilton, 26, said that another key change in the lives of autistic young people in Salem would be the adoption of the Mason alert, a police tool that would add crucial information to Amber alerts in the event of a missing autistic child.
“Unlike other kids, autistic kids won’t wander to a friend’s house,” Tilton said. “The alert would provide police departments with photos, descriptions of whether the child is verbal or nonverbal, how well they respond to verbal commands, and locations where they are likely to wander to.”
Tilton also argued for increased access to service dogs for autistic people.
“Dogs can calm autistic people during situations of sensory overload, which makes it possible to attend more public events,” Tilton said. “Dogs are life-changing.”
The full spectrum of services required by individuals on the autism spectrum differ with each specific case, but of importance to all, attendees at the walk stressed, was the support and acceptance of friends, family, and community.
“We’ve had Alex in thousands of hours of applied behavioral analysis, social and speech therapy since he was 2 1/2. He’s done so well that he barely even needs the services we once sacrificed so much for. I couldn’t be a prouder parent,” Schild said. “I would not change a single thing about my son, who is the kindest, sweetest boy I have ever known. My deepest hope is that the world – which is so often so cruel – will be as kind and accepting.”
For more information on Saturday’s Autism Awareness Fair, visit salem.com.
- The Faces of the Autism Spectrum: Meet Hannah! (mypicturedmoments.com)