ELLSWORTH — Nearly 25 years ago, when Cathy Dionne’s son was diagnosed with autism at 15 months old, he was one in 10,000 children who would be diagnosed with an autism spectrum disorder (ASD).
Today, less than three decades later, one in every 54 children is diagnosed with an autism spectrum disorder, according to the most recent report released by the Centers for Disease Control and Prevention (CDC). That number is based on data from 2016 for children born in 2008.
“We’re at epidemic levels for autism in the United States,” said Dionne, who is the executive director of the Winthrop-based Autism Society of Maine. “We don’t know what causes autism yet.”
There are no medical tests, such as blood or DNA testing, to determine if a person falls under the autism spectrum disorder umbrella. Instead, diagnosticians assess behavior. Certain characteristics such as social awkwardness, language delays, anxiety and obsessive compulsive behavior all are connected to an autism diagnosis.
“You can have a significantly better outcome when children are diagnosed around 3 years old,” said Dionne. She adds that each child exhibits different behaviors, which makes it difficult to follow a set formula. “One hundred kids could be put in a room and you’re not going to find two that are alike … They’re all so unique. Imagine coming up with a program for 100 different people.”
Boys are four times more likely to be diagnosed with autism than girls. In 2014, one in 38 boys was diagnosed while one in 152 girls was diagnosed. Autism spectrum disorder is reported to occur in all racial, ethnic and socioeconomic groups, according to the CDC.
According to a report from Johns Hopkins University’s Bloomberg School of Public Health, rates of autism have been rising since the 1960s. Researchers don’t know how much of this is due to an increase in actual cases. Other factors that may be contributing to a greater number of diagnoses are an increase in awareness and better screening, treatment and intervention services.
Some children may be diagnosed with anxiety or OCD, but not autism.
“You’re not getting the true depiction under this autism piece,” said Dionne about why it is difficult to determine exactly how many people have ASD. “We don’t know for sure because of those reasons.”
There are 3,529 people with ASD in the Autism Society of Maine database, but Dionne says the real number could be closer to 10,000. “Our numbers are based on when families call us.”
That same database shows 105 diagnosed with autism in Hancock County.
“When we get the diagnosis, you’re not just diagnosing that child, you’re diagnosing that family,” said Dionne, whose son entered a 30-hour-a-week program about a year after being diagnosed.
Now in his mid-20s, he is still non-verbal and communicates largely through an iPad.
“They have such unique needs that no one really understands the needs,” she said. “What works for one may not work for another.”
According to statistics listed on the Autism Speaks website, 31 percent of children with ASD have an intellectual disability (IQ less than 70), 25 percent are borderline range (IQ 71-85) and 44 percent have IQ scores in the above average range.
In 1992, there were 15,556 people between the ages of 6 and 22 in the United States receiving special education services for ASD, according to the National Center for Biotechnological Information (NCBI). By 2011, this number had increased by more than 25 times to 406,957.
Caring for Americans with autism reached a cost of $268 billion in 2015 and is expected to rise to $461 billion by 2025 without more effective interventions and support across the lifespan, according to Autism Speaks. On average, medical expenses for children and adolescents with ASD are four to six times greater than for those without autism. Services for adults with cost an estimated $195 billion a year, compared to about $65 billion for children.
“What we’re not looking at is what happens when they leave school,” said Dionne. “That’s when the real work begins. Parents are having their children live with them until they (parents) are 70 or 80.”
According to Autism Speaks, more than half of young adults with autism remain unemployed and unenrolled in higher education in the two years after high school. In addition, of the nearly 18,000 people with autism who used state-funded vocational rehabilitation programs in 2014, only 60 percent left the program with a job. Of that number, 80 percent worked part time, earning a weekly rate of $160, which is well below the poverty level. And, nearly half of 25-year-olds with autism never held a paying job.
Dionne’s son has a job that he works at three hours a week, but that stopped when more public precautions were taken for COVID19.
“As an adult, he still lives with me and my husband,” said Dionne. “We expect him to live with us for a long time.”
Recent changes due to the coronavirus pandemic like schools closing and parents working from home is especially difficult for families of a child with ASD.
“The biggest thing with autism is routine,” said Dionne, who has been meeting with families via videoconferencing to offer support services. “The biggest thing for parents right now is our routine is gone … It’s hard to establish things and keep them up.”
Outside of routine, it can also be the familiar things or specific items that are special to a child with ASD. As stores struggle to keep up with supplies, that could have a devastating effect on a person with ASD.
“If you have a child who has a certain food but the grocery store is out, that’s how our families have to stick together,” said Dionne. “In these trying times here, we’re all doing things differently.”