PHOENIX — Looking strictly at the math, medical research shows Americans spend about $245 billion on autism services each year.
Of those dollars, we spend about $60 billion on services for children.
With only a quarter of the resources focused on helping children, scientists and medical experts studying autism see a major flaw in our math.
“Research is showing we can make a reliable autism diagnosis at 18 and 24 months and researchers are working to get that age lower,” Dr. Christopher Smith at the Southwest Autism Research and Resource Center in Phoenix said.
Why does that matter to the math?
“The longer parents wait to see if their child has autism, the more time is lost,” Smith said.
With autism, every hour lost equals multiple hours of energy and money spent trying to correct dysfunctional habits later.
“Autism is a pervasive developmental delay that limits a child’s level of functioning in specific areas and separates their level of functioning from their peers,” Smith explained.
Both children and adults who are screened for autism by their primary care physician often head to SARRC if they tested positive.
During the past year, an additional 175 children between 12 and 36 months old have visited the clinic, thanks to an early intervention initiative launched by SARRC and the University of California-San Diego.
It’s called the Get SET Early Model project. The SET part stands for Screen, Evaluate and Treat. The National Institute of Mental Health funded the project.
“Five years ago, investigators at UCSD asked pediatricians to screen at well baby visits,” Smith said. “They found it significantly lowered the age of diagnosis.”
That prompted the NIMH to offer a grant for further screening research. SARRC and UCSD won that grant, which instructed 107 pediatricians in the Valley to conduct the same screenings for three years.
“The project launched in the summer of 2014,” Smith said.
To keep the study consistent across all office visits, “we spent the first year recruiting pediatrician offices, and training them on our screening and referral procedures. Before a practice began, we documented their usual screening procedures, so we could demonstrate how our project changed their practice.”
One of the doctors involved with the study, pediatrician Dr. Jennifer Caplan, greeted a 2-year-old boy and mother as they waited for their 24-month-old baby wellness checkup.
“Hello. How are you?” She asked the toddler while holding a clipboard in hand.
He is quick to answer and dives into a fairly intelligible answer.
“I understood about half of that, which is good,” she smiled, all the while keeping her attention on the little boy.
As she assessed the child, his mother filled out the form with specific questions from the Get SET screening.
It asks, for instance, when your child plays with toys, does he/she look at you to see if you are watching?
The answers are unambiguous. Yes. Not yet. No.
Meanwhile, Caplan asked the boy’s mother about his motor skill questions.
“Is he able to do a jump with two feet?”
The boy squeals and hops two inches off the ground before both mom and doctor finished asking him to jump.
These instant interactions and the desire to connect with Caplan are strong indicators of a typically-developing child.
“At 2, he’s coming along beautifully,” she assured the mother.
Caplan was screening the child for red flags — not keeping eye contact, not smiling, avoiding questions or simply not speaking a single word.
“If the kids aren’t enjoying engagement with their parents, they’re going to seek it less,” Smith said.
Those interactions are the building blocks for learning and socialization.
“That’s how kids develop and move forward. If they have fewer experiences, they’re going to fall behind.”
Back at the wellness check, Caplan relies on both her observations and the screening questions, which allow her to better assess if there are developmental delays.
It’s tricky, “especially with the really young babies, for example, a first time mom who doesn’t have experience with a previous child.”
Caplan explained answers can vary and the questions can be confusing and hard to answer because, “they don’t really know what typical is and isn’t.”
Sometimes, Caplan went on, “I get parents who are very worried about development, but what I’m hearing them say to my questions are all very normal.”
Then again, she has found, “I get parents who are not at all worried about development and what I hear in answer to the questions sounds a little concerning to me.”
Because the Get Set screening program uses a standardized test, already vetted by physicians working with babies all over the country, Dr. Caplan said there is more clarity, “Because we’re able to get beyond what the parent’s perceptions are and instead, get some really good information about what’s going on with development.”
Before the standardized screenings, mothers like Melissa Diggins, relied on intuition. When her son was in his first year she noticed something was off.
“He was not making eye contact, and spoke one word, ‘Momma.'”
He wasn’t responding to his name either.
“It was as if he wasn’t hearing properly.”
She said she checked in with her pediatrician at the time who said, “Don’t worry! Let’s give him a little more time,” adding, “Boys tend to develop a little slower.”
Unlike most new moms, Diggins has twins, and could compare her daughter’s progress to her twin brother’s.
“She had met all her milestones.”
She noticed her son was falling far behind.
“There was such a gap between the two twins developmentally.”
Diggins also had an advantage over other new moms because, “I have a masters degree in education.” She had studied the milestones and set out to get her son’s hearing checked, but there was no problem there.
Meanwhile, in the back of her mind, she kept thinking of the word autism.
“It’s just such a voodoo word,” she noticed as she went to the doctors and talked with friends and colleagues. “It felt like nobody wanted to say it.”
Finally, after taking her son to SARRC, the word autism came simply, without guilt, and as a matter of fact. He was 18 months old.
Still, she felt a twinge.
“That was even too late! I had a lot of people say, ‘Gosh! Isn’t it too early? Shouldn’t you wait until he’s 3?’ … To me that was never an option.”
Diggins knew the lag time between a diagnosis and actual treatment can be painfully long.
Although SARRC moved swiftly to get her son’s evaluation to the state, Diggins said, “many months were wasted waiting for paperwork, waiting for the state to come out.”
She warned other parents it could take 90 days to get the therapists to your door.
“The hurry up and waiting part was the most frustrating part,” she said, because “the whole time, as we know from research, we’re losing those most precious months to get (my son) where he needs to be.”
The aversion to the word autism may stem from well-meaning parents, family, friends and even some doctors who panic.
“Instead of seeing it as another developmental delay, the word is seen as so heavy, as if there is no hope,” explained Caplan. “But, as a pediatrician, we always see hope!”
Diggins sees it as a blessing in disguise. Today, her son is six months into intensive A.B.A. (Applied Behavior Analysis) therapy and socialized play.
“He tells me he loves me,” she beamed, “As a mom, you wonder if you’ll ever hear it.”
And, with other kids, “He’s hugging and saying ‘hello’ and ‘goodbye.’”
As the therapists sing the song signifying it’s time to clean up their area, Diggins’ son pouts and reluctantly begins to pick up his toys.
He is showing emotions, and learning to interact. While watching an aircraft fly over her home, she noticed, “he’s looking at the sky now and naming airplanes and helicopters.”
Six months ago, before his autism diagnosis, “he didn’t even notice the world around him.”
It’s as if a cork had bottled the toddler’s emotions for nearly two whole years.
“It’s in there,” she insisted. “It’s trapped in there.”
The mother of twins and now advocate of a child with autism reminded all parents, “They don’t know how to get it out … you have to teach him.”
For parents still having doubts about screening for autism, she relies on her educational expertise to answer.
“There is no negative to it, you’re not putting your child on medication,” which can happen when a child is diagnosed with attention deficit disorders.
She continued, “speech therapy, occupational therapy, they’re only going to help.”
She credited SARRC for helping her family and urges other parents who have an inkling something is not normal.
“Follow your gut, push for the screening process to happen.”
If your pediatrician is among the 107 in the Get SET Early Model screening program, your toddler is already being tested. If you ask and they are not, Smith said to insist on having your pediatrician conduct the Modified Check List for Autism In Toddlers beginning at six months and continuing as they go to their 12-, 18- and 24-month baby wellness visits.
If you’re not directly impacted, and simply doing the math, pulling the cork out of the stigma behind the word autism could be a good start to reducing the billions of dollars spent on fixing social behaviors in adults with autism down the road.
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