PHOENIX — Autism is the fastest-growing developmental disorder in the country, according to the Centers for Disease Control, yet it is the most underfunded when it comes to research and program development in the country.
The Southwest Autism Research and Resource Center is trying to remedy that in part by providing ongoing screening for developmental delays in infants and toddlers.
But not all children are diagnosed at an early age and not all children have the same symptoms. Pediatrician Dr. Jennifer Caplan says she sees varying degrees of children with autism.
“Some kids have mild social problems, but they’re excelling in mainstream classrooms with no problems,” she said. And then she has seen, “kids who are autistic who are almost non-verbal.”
It’s a huge spectrum.
“I feel like a lot of parents, when they hear the word autism, are only thinking of one (part) of the spectrum and don’t realize what a huge thing it is,” she said.
A few decades ago, a diagnosis of autism was met with little support and a sense of hopelessness. Today, families with newly-diagnosed children can attend SARRC’s family orientation program.
“We have two groups,” explained Alex Boglio, SARRC’s clinical manager for education training and consultation. “There’s the school age, which is for 6 to 11 year olds, kindergarten through fifth graders and then another for teens and adults.”
The program is relatively new at SARRC and, in one meeting for families of school-aged children last week, four caretakers arrived. One family has a kindergartner who was identified in preschool with autism. The other couple has a fifth grader who was recently diagnosed.
Clinician Sheri Dollin led the meeting.
“I want to begin by saying, wherever you are in your journey, it’s really important … to find that balance in your life … because living with autism can be all-consuming,” she said.
As she went around the room asking for introductions, some family members openly shared their experiences while others prefered to keep the matter private. They were understandably feeling overwhelmed and uncertain.
But, if it’s guilt, Dollin instructed, “leave it at the door … because we’re only human … it’s about being resilient.”
It’s not uncommon for families to feel guilt over a late diagnosis, Boglio said, but she reminded parents they are not alone in missing it.
“It doesn’t mean the parent did anything wrong,” she said. “It just means all of the people who have been in that child’s life haven’t identified something until now.”
“It’s hard to pinpoint autism, especially when they’re high functioning,” said Janet Kirwan, SARRC’s Director of Family Services.
Sometimes an autism diagnosis is masked by another developmental delay such as Attention Deficit Disorder.
For some reason, Kirwan has noticed “people like ADD, they don’t like autism.”
Perhaps “it’s because there isn’t drug a treatment for autism. We do treat it symptomatically,” she said.
“It can be difficult for a teacher to identify a child has autism or needs additional services,” Boglio said.
Even if a teacher has had autism experience with a prior student, “autism is a spectrum,” Boglio explained, “meaning we can have a person who is high-functioning, able to talk, but having difficulties in social situations.”
The next school year, the teacher could have another child on the spectrum, “who is presenting in a very different way.”
“That can be a little confusing for teachers, so it’s important that we continue to educate,” Boglio said.
Dollin set out to educate the second group of parents in the next family orientation meeting, helping teens and adults who are newly diagnosed.
On one side of the room, a couple from Minnesota sat with their 23-year-old son. They came to Phoenix to learn about programs supporting adult autism and independent living. In the orientation, they found out about SARRC’s First Place Transitional Academy, which helps adults with autism learn life skills and career training in a college environment.
On the other side, a mother and her teenage daughter admit they are in the dark about programs that could support the struggling 16-year-old.
“What’s an IEP?” the girl asked Dollin.
Dollin went onto explain it stands for Individualized Education Plan.
“It means that regardless of what your challenges are, once you are medically diagnosed with autism, you are entitled to a free and appropriate public education (FAPE),” Dollin said.
Buzz words like IEP, FAPE and DDD (Division of Developmentally Disabled) roll out of the mouths of experienced parents in the room. For the families just learning about autism and their legal rights, it can be overwhelming.
Kirwan, having raised a son with autism who is now 27 years old, knows the challenges parents are facing if they don’t get a proper diagnosis early and apply for DDD designation.
She winced when parents tell her, “Well he’s not going to get any services, he’s too high functioning. I’m not going to apply.”
She said it becomes a lot more difficult down the road, “because if you are not in the system prior to age 18, with a qualifying diagnosis, it’s almost an act of God to get them to qualify.”
Another experienced parent groaned as Dollin informed the group many therapies and services provided for a child with autism no longer continues under the same government services once they legally become an adult.
The most important takeaway from the family orientation is for parents to become their own best advocate and know state and federal laws they learn.
Another acronym that bounced around the room was IDEA.
Kirwan told the parents to “go to a training on the Individuals with Disabilities Education Act.”
Raising Special Kids, the Arizona Department of Education and the Arizona Center for Disability Law all offer free trainings on the IDEA.
Before the family orientation was over, Dollin armed parents with a 62-page booklet from the Autism Speaks website entitled, “100 Day Kit for Parents of Newly Diagnosed Families of School Age Children.” It contains a comprehensive glossary of terms, steps to take toward a child’s education plan, healthcare resources and methods for tracking development.
For parents who have a child diagnosed with ADD, or at any time in their life exhibited autism or Asperger’s type behavior, Boglio told parents to “reach out to your pediatrician, teacher, to SARRC, to find out if your child might be (still) dealing with autism.”
“You never know what’s ahead with autism,” said Kirwan, who added some people see behavioral changes from childhood through puberty and into adult life. “What wasn’t obvious when he was an 8-year-old … may change with hormones when he’s a teenager.”
For help identifying whether your child has autism or Asperger’s, begin with an online screening tool at SARRC’s website.
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