(The following article by Staff Writer, Rene A. Guzman, originally ran in the San Antonio Express-News on November 19th 2018)
It’s been more than a dozen years since Jennifer Allen first learned that her oldest son, Sam, had Asperger Syndrome, now diagnosed as high-functioning autism. And still she remembers how fast her sadness turned to relief.
At last she knew why Sam, who was 10 at the time, always isolated himself from the other kids in class. Why he could never finish a sentence without losing his train of thought. Why despite being bright his grades suffered.
“I knew that I’d be able to understand my son a lot better,” Allen said. “It was a breakthrough.”
It was also the beginning of a mission to help other families identify and understand Asperger’s, with Sam as both guide and inspiration for how to succeed with such a complex and often bewildering neurological condition.
“Eventually we got the hang of how to deal with my autism,” said Sam Allen, now 23 and about to graduate from college with a degree in engineering. “But we decided we wanted to give these other parents the opportunity to get the information that they need in order for their child to cope with their autism. We didn’t want them to be in the same position we were, when we were in the complete dark about autism.”
That’s why mother and son founded Aspergers101, a San Antonio nonprofit dedicated to educating and empowering all lives touched by Asperger’s and high-functioning autism.
Aspergers101.org provides free access to the latest autism research and policies, with numerous articles and resources from leading doctors, educators and other experts. The user-friendly site covers autism across the spectrum and across ages, from prekindergarten through college and infancy through adulthood.
Aspergers101 also creates and compiles online videos and school presentations with about a dozen volunteers and staff, including Sam’s younger brother, Charlie.
For the Allens, it doesn’t get any closer to home. Jennifer Allen literally runs the nonprofit out of a converted bedroom closet, which the former broadcast marketing executive shares with her husband, Herb, as a compact home office.
That small space has led to some big strides in Asperger’s and autism advocacy.
The Allens have crafted several Asperger’s and autism-awareness programs, most notably a self-produced documentary called “Coping to Excelling,” which was screened in several Texas theaters and aired on WOAI. Their first-person look at raising a child with high-functioning autism includes insights from leading Asperger’s and autism experts, such as noted British psychologist Tony Attwood and autism spokeswoman and animal behaviorist Temple Grandin.
Then there’s Asperger101’s “Driving with Autism” initiative.
In 2015, Jennifer and Sam Allen partnered with the Texas Department of Public Safety to improve interaction between law enforcement and a person with communication challenges. The result was the driver license restriction code Communication Impediment with a Peace Officer, which helps protect a person diagnosed with Asperger’s and autism, as well as deafness or other conditions that may impede communication, from potential misunderstandings with an officer if pulled over.
Cynthia Hamilton, development director for the Autism Treatment Center in San Antonio, said there are never enough autism services, especially social and employment programs for those with higher-functioning autism. Adults with high-functioning autism can make up large numbers of the homeless and unemployed. Aspergers101 helps cover that gap.
“Just another reason to support them,” Hamilton said.
Asperger’s now falls under the umbrella term of autism, or autism spectrum disorder. As Aspergers101 notes on its website, the term “Asperger’s syndrome” was dropped from the American Psychiatric Association’s Diagnostic and Statistical Manual in March 2013, though those diagnosed prior to that still identify as having Asperger’s.
The National Institute of Mental Health and Aspergers101 define Asperger’s as a developmental disorder characterized by significant difficulties in social interaction and communication, along with repetitive behaviors and/or resistance to change in daily routines. Symptoms typically start in early childhood and can cause a person to require help with daily life.
Jennifer Allen said the treatment for Asperger’s or high-functioning autism for children 6 and older include cognitive behavior or talk therapy to manage emotions and repetitive behaviors, social skills training, and physical or speech therapies. Medications may also be used to treat related problems with anxiety or depression.
Through his years as an Asperger’s spokesman, Sam has learned to cope with his remaining symptoms, such as the antisocial tendencies and inability to deliver a straight sentence. Temple Grandin herself taught him how to deliver a firm but friendly handshake, and he’s spoken with relative ease at the Texas State Capitol and for other Aspergers101 presentations.
“Over the years, I feel like I’ve gained a better self-understanding of my autism,” he said.
Sam and he and his mom hope to continue bringing such insight. Aspergers101 welcomes donations and manpower to maintain its website, as well as outreach for more families, employers and law enforcement officials with autism workshops and conferences.
Because as Jennifer Allen said, discovering a child has high-functioning autism is not a death sentence. It’s just the beginning of a challenging but rewarding journey.
“I’m telling you that your child has a chance to be very independent,” she said. “There’s a brilliant mind in there.”
René A. Guzman is a staff writer in the San Antonio and Bexar County area. Read him on our free site, mySA.com, and on our subscriber site, ExpressNews.com. | firstname.lastname@example.org | Twitter: @reneguz
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