The American Academy of Pediatrics (AAP) recommends that all children get screened for autism spectrum disorder at their 18- and 24-month well-child checkups. Today, those recommendations have been significantly enhanced.
Under the former recommendations, many children who experience social, academic, and behavioral challenges miss out on early intervention therapies because they lack an actual ASD diagnosis.
This is what happened to me. When I was a toddler, doctors labeled me with “sensory processing issues,” but no autism diagnosis, because I didn’t display the stereotypical symptoms that were associated with ASD in the early 80s.
These days, we know so much more about autism. We now know that girls on the spectrum are frequently overlooked just because the disorder often doesn’t present itself among us with the same traditional symptoms as boys. The bulk of existing autism research has focused on boys and tragically skewed the scientific community’s understanding of autism. As a result, many girls with ASD either go undiagnosed, or they get their diagnosis much later in life.
Again, this was the case for me. I didn’t receive my autism (Asperger’s) diagnosis until I was in my mid-thirties and had a daughter of my own with speech regression, sensory processing issues, and a certain “rigidity” resembling obsessive-compulsive syndrome (OCD). After a frenectomy at two years old to take care of her posterior tongue tie, she required intensive speech and physical therapy. It was a battle to get insurance to cover her treatment for even 6 months. Aetna wanted to cut her off at just 14 sessions, or 7 weeks.
My daughter was still not diagnosed with autism back in 2016, although Iwas. And I have always held a bit of doubt about whether or not my child received all of the help she really needed. Frankly, I have mostly felt alone when it comes to any “early intervention.”
I could tell that my daughter had a tongue tie when she was just an infant, but it took two years for me to find a pediatrician who would even listen to my concerns and examine her properly.
As a result, we battled difficulty with breastfeeding, colic, GERD, and oral aversion. I also learned to question my instincts as a mother.
Although my eventual ASD diagnosis at age 34 was something of a relief, it made me angry too. Sometimes, I’m still angry about it. I spent my whole life feeling as if something was wrong with me, as if I was weird and wrong. I missed out on years of the therapy and guidance I needed. Early intervention that could have changed my entire life.
Every time I struggled in school, and every time I struggled in my relationships, my doctors and teachers all wrote me off as not living up to my full potential.
“Shannon, you’re so much smarter than this,” was the mantra of my teenage and college years. And it was terrible.
I suffered for decades as a person with an atypical brain living in a neurotypical world and no support system. Even today, it is a deep frustration coming to terms with the fact that so much of that suffering was unnecessary.
There’s no way on earth that I want my daughter to go through the same sort of pain. Which means I’ve had to advocate hard for my child to the point of “redshirting” her to spend a year in preschool instead of letting her go to kindergarten. She’ll start kindergarten next August at six, older than most of her peers, but she’ll also have gotten a much better foundation for the rest of her education.
Today’s change to the AAP recommendations seems like a hopeful one. They now advise that families have more of a say in the care of their children. That means pediatricians are supposed to inform parents and caregivers of current research and findings so that together, the doctors and the families can get children the therapies they need as early as possible.
Early intervention is vital, and it’s not about “curing” autism or even “fixing” other atypical behavior. It’s about supporting children when they are young to give them the best chance for a well-adjusted and fulfilled life. It’s also about empowering these kids’ parents to get their children into therapy early and fostering a healthier relationship between caregivers and pediatricians who need to work together for the sake of a better outcome.
As it stands, too many families have had to bounce from doctor to doctor, or medication to medication, and valuable time has been wasted as families lose hope of any helpful diagnosis.
People on the spectrum need support to thrive. We need to know that we’re not crazy or broken. And we deserve the chance to learn how to best use our brains to our advantage.
What’s really exciting about the new recommendation is that issues like sensory processing disorder or even ADHD will no longer get in the way of early intervention treatments that a child with autism might need.
“Starting services early is too important to let a lack of a confirmed diagnosis get in the way,”
– Dr. Wendy Nash
Without the new recommendation to examine behavior and development at months 9, 18, and 30, many children with sensory issues or ADHD risk having those conditions overshadow any potential or coexisting autism.
It is well-established that children who undergo treatment for sensory processing issues, as both my daughter and I did, often miss out on other helpful therapies. Like autism support.
And that’s a shame because it could impact them for life. Early intervention matters. About 90% of the brain’s neural connections are made between 0 and 5 years old. If kids don’t get the early therapy they need in those years, those vital connections can’t be made.
Currently, there’s a company working on software, digital therapeutics, diagnostics and medicines to empower pediatricians in early diagnosis and treatments. Cognoa is conducting a Pivotal Study to demonstrate the effectiveness of its FDA designated breakthrough device to aid in the diagnosis of autism spectrum disorder in children as young as 18 months.
Of course, it’s not just children on the spectrum and their families who will benefit from the AAP’s expanded recommendations. These changes reflect a growing desire to more ably support all children who display challenging behavioral or developmental symptoms without the luxury of a positive diagnosis.
The new guidelines are very much like a safety net designed to address the growing problem of kids who slip through the cracks and never receive adequate treatment because the previous early intervention screenings failed them.
It will be interesting, however, to see how the new recommendations play out among families, pediatricians, and insurance companies. After all, we are talking about increasing care for more children, which ultimately means higher (initial) medical costs.
Certainly, the argument may be made that more early intervention will be cost-saving in the long run by avoiding treatment delays.
In 2014, researchers with the CDC observed more than 325,000 children across 11 US communities and discovered that 85 percent of the children with ASD had developmental concerns documented in their health records by the time they were three. However, only 42 percent of those kids had a developmental evaluation by that age.
And that’s just the kids who get an autism diagnosis. We still don’t know how many kids are slipping through the cracks because they haven’t received a formal ASD diagnosis. There are many other neurodevelopmental disorders which require early intervention whether or not they eventually lead to a diagnosis. Studies indicate that anywhere from 5 to 16 percent of children have sensory processing disorder symptomswhile children with autism sit just below 2 percent.
At the end of the day? Earlier intervention regardless of an ASD diagnosis means helping many more kids, but families must be made aware of these new recommendations, and doctors (not to mention the insurance companies) must also get on board.
Thanks to Jun Wu, George J. Ziogas, and Marta Brzosko.
Originally posted here.