Autism in Utah: Wide spectrum, long waitlists
Bryan Howell, 3, crosses a wood staircase on Monday, March 14, 2016 at the Kids on the Move Autism Center in Orem. SPENSER HEAPS, Daily Herald
Dominick Lozano plays in a ball pit on Monday, March 14, 2016 at the Kids on the Move Autism Center in Orem. Children at the center begin their day with active play time, which helps regulate focus for the day. SPENSER HEAPS, Daily Herald
Ailee O'Connor, 14, laughs with her mother Jeanne during dinnertime at her home in Saratoga Springs home on Monday, March 7, 2016. Ailee is low functioning on the autism spectrum and was only diagnosed with autism about five years ago.
Jordan Norton plays with his daughter Lexi at North Park on Friday, March 11, 2016 in Spanish Fork. Jordan falls on the autism spectrum, but despite his adversities he was able to serve on a mission and leads an independent life. DOMINIC VALENTE, Daily Herald
A 34-year-old man may not be able to speak or feed himself and wears diapers.
A 14-year-old girl may have no problems communicating and be considered a musical prodigy.
A 10-year-old boy might only express his wants and needs through hand-drawn pictures.
An outsider might not realize a teenager has autism until that person confides in them.
“If you’ve met one person with autism, then you’ve met one person with autism,” said Terisa Gabrielsen, assistant professor in the counseling psychology and special education department at Brigham Young University.
Autism spectrum disorder is a neurodevelopmental, social communication disorder. It is not a disease. Some people consider it a disability, others a condition. Some people on the spectrum consider themselves neurodiverse, not disordered or disabled.
Some people use the terms high or low functioning to describe someone with autism, and others prefer to say an individual has a lower language level or is low verbal. Again, it depends on personal preference.
When referring to someone who has an autism diagnosis, “people-first” language is also often preferred. Instead of saying “an autistic child,” it would be better to say “a child with autism.” People-first language places the individual before the disability, instead of entirely defining someone by the diagnosis.
Nationwide, about 1 in 68 children have autism, but in Utah, 1 in 54 will be diagnosed. For every five boys diagnosed with autism, there is one girl.
According to the National Autism Association, about 40 percent of children with autism don’t speak. Some might have spoken, but regressed, and some will start speaking later in their lives. About 25 percent of people with autism are nonverbal, according to Autism Speaks.
What’s causing that increase is unknown. Part of it can be attributed to better detection or reclassification of other disorders, but autism is still on the rise, and researchers don’t know exactly why.
More than 65 genes account for autism, and research is still ongoing. The hope is that with more research, there will be interventions specific to the genetic type of autism people have.
People with autism may respond inappropriately in social situations, have difficulty forming friendships, be highly sensitive to changes and be dependent on routines.
Autism is considered a spectrum disorder because it impacts everyone differently, and ways to classify it can be misleading. Individuals might be higher or lower functioning depending on the day, but those terms are still needed in order to classify someone to treat each person and find out how much support he or she needs.
“There are two sentences that you can say that apply to all individuals with autism,” Gabrielsen said. “One is that they have some degree of social communication difficulties or have had some degree of social communication difficulty, and that they have had some degree of either repetitive or restrictive interests, or sensory difficulties, but other than that, there is no one slam-dunk symptom that all people with autism have.”
The fifth edition of the “Diagnostic and Statistical Manual of Mental Disorders” classifies three levels of autism by severity, but even that’s vague. The three levels, with the third being the most severe, are generically defined as requiring support, requiring substantial support and requiring very substantial support.
The DSM-5 also eliminated the Asperger syndrome diagnosis, grouping it under the autism umbrella, and encourages an earlier diagnosis of autism. Previously, the criteria for an autism diagnosis was geared toward identifying the disorder in school-aged children.
Although Asperger syndrome is no longer a diagnosis, many people still identify with it.
“When you talk about the spectrum in people’s minds, those are totally different things, Asperger’s versus classic autism,” said Teresa Cardon, director of the Melisa Nellesen Autism Center at Utah Valley University.
At the ends of the spectrum are individuals who are low functioning or high functioning, but the middle is filled with people who need some level of support, which includes people who are minimally verbal. Those who can communicate their needs and wants, even if it’s through pictures and not words, are considered functional.
“With a decent amount of support, they can function pretty well,” Cardon said. “Without support, that’s a different story.”
Symptoms and detection
Parents usually start suspecting their child has autism when they notice a lack of communication, or if communication starts to regress. Parents will often tell a professional their child doesn’t look at them, isn’t social, doesn’t cuddle, doesn’t connect with others or doesn’t want to be comforted.
Many signs can be spotted when a child is between 18 months and 2 years of age, but autism can be diagnosed as early as 12 to 14 months of age.
The average age of diagnosis in Utah is 4 years old, but many aren’t diagnosed until they start attending school.
The earlier the diagnosis, the better, because that means interventions can happen sooner, while the child’s brain is still developing.
“If you can intervene as quickly as possible, you can help them catch up,” Cardon said.
There’s no medical detection for autism, but things like brain scans and eye tracking are being used to research it. There isn’t a blood test, brain scan or fingerprint test to detect autism. Instead, it’s diagnosed through a series of observational, behavioral assessments called the Autism Diagnostic Observation Schedule, or ADOS, which consists of a series of scenarios set up to see how a child responds, looking for the presence of abnormal behaviors and the absence of normal ones.
Other tests exist, including a three-hour interview with the parent.
But despite an urgency for early detection, it’s not always feasible locally.
“In Utah County, we really struggle with diagnostics,” Cardon said.
A physician, psychologist or speech language pathologist can diagnose autism, but for the trickier cases, a professional who has extensive autism knowledge is needed. For those cases, there’s fewer than five people in Utah County who can diagnose a child with autism, so many families head north to Salt Lake City or join a waiting list, wasting valuable time that could be used treating it.
“Imagine being told the earlier your child starts intervention, the better prognosis for future independence, and you’re told we’ll see you in 6 to 12 months to get that diagnosis, and then you get the diagnosis, and you’re told there’s a waitlist for 6 to 12 months to get services,” Cardon said. “And you’ve been told, early is better, and all of a sudden you land on a waitlist. It’s not OK.”
Parents can access treatment immediately through the school system without a diagnosis, but those are basic services and often understaffed. For additional treatment, a diagnosis is needed for insurance to cover it. Many insurance companies have only created autism coverage plans in the past year.
“It’s not that you can’t get treatment, you can’t get it covered by insurance,” Gabrielsen said. “Everyone can get treatment. The question is if they can pay for it.”
Even a year ago, the state held a lottery system for parents with Medicaid to receive a waiver for autism treatments to be covered for their children.
But a diagnosis isn’t always certain. Gabrielsen estimated about 25 percent of children she sees come in for research have been misdiagnosed with autism.
Treatments for individuals with autism vary on where they fall on the spectrum. But often, treatment includes seeing a variety of therapists, which can include behavioral analysts, speech pathologists, occupational therapists to help with fine motor difficulties, physical therapists and even social workers to help families since many who have an autistic child end up with one working parent.
“The biggest problem for parents is there’s no one right path, there are multiple paths you have to cover simultaneously, and that’s what makes it so bewildering for a family, to wade through that,” Gabrielsen said.
Another common occurrence — people with autism end up needing medications to deal with anxiety and depression. They can also require support that comes in the form of learning job interviewing skills, how to live on their own and how to manage their own finances.
Public schools do what they can, but have to work with limited capacity, funding and training.
There’s also a deficit of people in Utah County who can help people with autism, whether it’s through diagnosis or treatment.
“We’re playing a little bit of catch up,” Cardon said.
In Utah County, there are 18 certified behavior analysts who are required to supervise autism programs. With 4,000 new autistic children who recently qualified for Medicaid services, there needs to be more professionals to oversee those programs.
“We cannot service all the children in our state right now,” Cardon said.
And then there’s the services cliff, she explains with a “clunk,” of when someone with autism reaches the ages of 18 to 22 and exits the public education system. But the tsunami of people who have aged out of the public school system still need support.
“Depending on the amounts of support needed, an individual who needs a great amount could go on through the rest of their lives,” Cardon said.
Support doesn’t come cheap, though. On top of medical costs, the Centers for Disease Control and Prevention estimates behavioral interventions can annually cost between $40,000 and $60,000 per child.
A growing awareness
Twenty years ago, Cardon said only a handful of children per 10,000 were diagnosed with autism, so few that a teacher in her master’s program asked why she’d ever choose to study it because she’d only have one or two clients in her caseload and would be limiting her career.
Just 16 years ago, 1 in 150 children were diagnosed with autism nationally.
Three years ago, there were between 7 and 10 students in UVU’s Understanding Autism course. Last semester, it was offered twice, with about 60 people in each class.
Now, in those classes, a professor can ask students to raise their hand if they know someone with autism, and 90 percent of the class will. Twenty years ago, there would be two or three. Without fail, a few students in the class will approach the professor and declare they either suspect they’re on the spectrum, or a loved one is.
With an increase in diagnosis, though, also comes an increase in understanding and awareness, creating more hope and decreasing the stigma for a lot of families.
“Autism is not a death sentence, and a lot of people fear that,” Cardon said. “Some autism is harder than other autism, but really, there is a lot of hope. There are a lot of gifts and strengths.”
When a child is diagnosed, most parents feel helpless, and Cardon and Gabrielsen, along with multiple local professionals, want to end that.
Another struggle is encouraging employers to take a chance and hire employees who have disclosed they have autism. These employees, Gabrielsen and Cardon said, can come with valuable skills, like encyclopedic knowledge of a certain subject or being someone who enjoys doing the same thing over and over again.
“That would be a big step forward for people with disabilities,” Gabrielsen said.