Even professionals have a hard time defining autism
The next time a morning routine seems overwhelming, think of Kristin Blair.
Each morning, Blair’s 4-year-old son, Declan, comes into her room and lies on her bed to watch TV, just before Kristin must perform a series of three playful moves to which Declan answers, “I love you, Merry Christmas, Happy New Year, Happy Easter.” These wishes trigger Kristin to put on her glasses and robe, turn off the TV, pick up Declan, carry him to the light and tickle him three times.
And those are just the prerequisites to then walk into Declan’s room for another circuit of predetermined tasks before walking downstairs.
As arbitrary as these tasks may seem, they flow with precision and purpose in the mind of Declan, who began showing signs of autism at about 18 months old.
While mothers and fathers around the world are overjoyed with the achievement of 2-year-old milestones such as building a tower of four blocks and the ability to point to things in a book, Declan grouped like objects, sometimes according to taxonomy. As a toddler, Declan Blair was able to group his plastic Fisher Price animals into birds – the penguin, nightingale and quail – and reptiles – the alligator and lizard. He grouped tubes of toothpaste he found throughout the house, and turned magnetic letter H’s to join the I’s on the family’s refrigerator.
The 2-year-old advanced with disconcerting speed in some facets, but lagged behind in behaviors that are often taken for granted. It took Declan longer than expected to clap and point, and he never imitated adults, as most children do.
“There was a commercial out with a little baby sitting on the floor and just bouncing and laughing,” Kristin, a single mom from Charleroi, recalls. “He never did that. He was a happy baby, but it took a lot to get him to laugh.”
Despite pop culture references to autism – let alone personal experiences – many would be hard-pressed to define the disorder. Coincidentally, professionals haven’t had an easy time with it either.
Over the past 20 years or so, the definition of autism has expanded to include subtypes such as Asperger’s Syndrome and Pervasive Developmental Disorder, among others. Beginning in May, however, these subtypes will assimilate into the term Autism Spectrum Disorder, according to the Diagnostic and Statistical Manual – the guidelines used to standardize the diagnosis of psychiatric disorders.
Regardless of what it’s called, these individuals, one in 88, to be exact, live with disorders of brain development that are characterized by difficulties with social interaction, motor coordination and sometimes health issues, such as sleep and gastrointestinal disturbances, all to varying degrees.
Though referred to as a “disorder,” those living with autism are often superbly talented in one or a few areas. So while Declan Blair may struggle socially, can’t stand to touch certain textures like sand or PlayDoh and will have an absolute meltdown if his mother strays from their complicated morning routine, he also reads at a first-grade level, has memorized an entire stack of outer space flashcards and can count to 100, all at 4 years old.
“He fascinates us everyday,” said Kristin. “It’s so amazing how his mind works. You never know what he’s going to come up with, and he loves to learn.”
Only two years into their journey with autism, Kristin Blair has already navigated through enough specialists and therapies to amass an file full of “in case I ever need it” information. She’s taken a voluntary demotion in order to work a schedule that accommodates Declan’s preschool and therapy schedules, and she remembers what it felt like when Declan was diagnosed.
“I was worried about him being treated differently,” Kristen said. “Would he have to go to a different school? How was I going to do this by myself?”
These are feelings the Suppo family of Donora know well.
At 1 year old, Becca Suppo had began to use a few words like other children, but by her second birthday she had lost all functional speech and was no longer responding to her own name.
Now 11 and considered “severe” on the autism spectrum, Becca, who is still working to improve her verbal communication, has found her areas of extraordinary talent, too.
“She’s a fish,” said Becca’s mother, Jen Suppo, of her daughter’s swimming ability – a skill that was almost predetermined by the family’s swimming pool business.
And, she’s a cheerleader.
Co-coached by Jen and the family’s longtime babysitter, Becca is a part of HotCheer AllStars Special Needs Cheer Team out of Elizabeth. In its second year, the group contains 10 girls, seven to eight of whom participate in exhibition competitions, where they are recognized for their special efforts at each outing.
“The girls get their makeup and hair done, have these beautiful costumes,” said Jen. “They get so excited.”
The road to cheer groups has been a long and atypical one for the family, which also includes Jen’s husband, Del, and 14-year-old daughter, Lauren.
When Becca was diagnosed, Jen and Del were handed two large, scientifically written books by Becca’s physician. Del got to the third page before throwing up his hands and saying, “I can’t read this; I don’t understand it.”
Unable to trudge through the textbooks either, Jen began her own research.
“I read articles and books to figure out what other books meant,” said Jen, recalling her frustration.
In the middle of this struggle to understand, Jen and Del looked at each other, and almost telepathically knew what was next: Jen would return to school to pursue a master’s degree in special education, and, eventually, earn a Ph.D.
Make no mistake, however. This endeavor had humble beginnings.
Jen didn’t march to her first class with grandiose plans of changing the world one autistic child at a time. Hardly.
“I wasn’t even sure I would make it through the first semester,” said Jen, who previously earned a bachelor’s degree in political science.
But changing the world she is, having finished her Ph.D last summer, and now working as an assistant professor at Seton Hill College, teaching undergraduate and graduate special education and autism certificate courses.
In both her personal and professional opinion, Jen feels this area is in desperate need of more resources for children with challenges like autism. Unlike Pittsburgh, the communities in Washington and Greene counties are distinct and scattered, making it difficult to create and maintain support groups.
Looking for middle schools appropriate for Becca now, the Suppos are beginning to feel concern for their daughter as she ages, highlighting another gap in resources.
“I’m always afraid as a parent that I could have all the knowledge in the world, but it’s scary to think that I might not be there at a time that she needs me,” said Jen. “I’m worried about the long term, too, because my husband and I aren’t immortal.”
Immortal, no, but they’re certainly creating a legacy of perseverance.
“When Becca was diagnosed, people looked at us like our life was over,” said Jennifer. “If it weren’t for Becca, I wouldn’t be Dr. Jennifer Suppo. She provided me with all these opportunities. She’s allowed me to come along with her for her ride.”