In most of the pictures of my daughter as a baby, she’s sucking on one of her stuffed animal comfort toys.
She never really took to pacifiers, a fact I was smugly proud of back then.
But as soon as she was able, she began stuffing those “lovies” into her mouth.
I would find the stuffed animal heads with blanket bodies scattered throughout the house.
Nothing I tried worked to curb the habit.
It’s a habit my 4-year-old daughter still continues today, although she saves her sucking mostly for bedtime and naps.
It seems like a fairly normal and innocuous childhood habit.
In fact, when I mentioned it to dentists and pediatricians, they all seemed mostly unconcerned.
Until other issues started to surface.
When it came time for solid foods, my daughter would avoid anything that had recently been warmed. She would accept room temperature food but preferred frozen if at all possible.
When planes would fly overhead, she’d clap her hands to her ears and cry out, “Too loud, Mama! Too loud!”
And when all my friends’ children moved past the stage of exploring everything with their mouths, my daughter was still sending me into panics over the things she managed to swallow.
Eventually, a behavioral therapist suggested sensory processing disorder (SPD).
My daughter, it seems, was orally seeking and auditorily avoiding.
We were lucky.
Getting my daughter treatment came fairly easily and through occupational therapy she began to make incredible strides.
I learned how to help her address her sensory needs and over time she began to learn how to anticipate and address those needs herself.
We were lucky.
We had understanding doctors and are part of a healthcare system that was accommodating.
Not every family has been as lucky as ours.
The debate over SPD
In 2012, the American Academy of Pediatrics issued a statement that addressed what the organization felt was a lack of evidence surrounding SPD as a diagnosis and called into question the validity of current treatment therapies.
The following year, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) declined to recognize SPD as an official diagnosis.
While no one argues that sensory processing issues can exist alongside a number of other conditions — attention deficit hyperactivity disorder (ADHD) and autism, for example — whether or not SPD can be its own separate diagnosis seems to be the current issue at hand.
The problem is a lack of evidence. But that doesn’t mean no evidence exists.
In a study last year, researchers said they discovered differences in white brain matter in children with SPD.
A 2013 study, although somewhat small in sampling, was able to find brain differences in boys 8- to 11-years-old suspected of having SPD.
This year, there were three studies that focused on emerging treatment options.
One involved the use of video games to promote better attention skills.
Another looked into ways to enhance cognitive abilities in children with SPD.
A third investigated a multifaceted approach to therapy.
All this, however, still isn’t enough to provide widespread approval of SPD as a diagnosis.
Doctors still remain torn on how commonplace these issues are and how effective the treatments can be.
Healthline spoke to two experts, each of whom had a different take on just how real SPD is.
Emmarie Albert is an Applied Behavior Analysis (ABA) therapist working specifically with children who have social and emotional needs.
She’s currently studying to become a board-certified behavior analyst. She’s worked in the field for seven years.
“Sensory processing disorder is tricky,” she explained. “You’d be hard-pressed to find someone on this planet that didn’t have one thing that sends them into sensory overload. Think of fork grinding across a plate, or the seam of your sock on the bottom of your toe. It really can be anything.”
She went on: “While I do think sensory processing disorder is real, and while I do think it can be absolutely debilitating, I don’t believe needing to cut the tags off your child’s shirt warrants an emergency appointment with the nearest doctor. In the world of Google, we are all medical experts, and I think many parents are looking for a diagnosis because they need a reason for the small annoyances. The truth is, most of the symptoms for SPD are at one point developmentally appropriate for most children.”
Kristen Bierma, MS, a counselor in Alaska who has 15 years of experience as part of a pediatric neurodevelopment clinic, has seen this issue from both sides.
For two years, she and her husband were foster parents to a child who had a diagnosis of SPD.
“Based on personal and professional experience,” she said, “I believe SPD is a valid diagnosis and that treatment (primarily occupational therapy) can be effective. It can be a difficult diagnosis to make, though, so perhaps it is over-diagnosed or misdiagnosed at times. Other factors contribute to the complication of diagnosis, including trauma, self-regulation skills, learning, behavioral and attention concerns, and other developmental delays.”
For now, the lack of consensus regarding how real and treatable SPD is, means that many insurance companies refuse to pay for treatment services.
That’s the struggle Edith Hoag-Godsey, a nurse and mother through adoption, has faced with her daughter Mariah.
“The first time I had an inkling that Mariah had SPD was when she was two and a half,” Hoag-Godsey told Healthline. “I had just read ‘The Out-of-Sync Child’ and got tears in my eyes because the issues they were describing were so familiar to me.”
About a year later, those issues continued.
“She was stuffing her mouth full, mouthing objects like a toddler, licking, walking like a bear everywhere, running into people on purpose,” Hoag-Godsey explained. “I started doing the interventions I read about in many of the popular SPD books, and we went to [occupational therapy] and paid out of pocket. She did several assessments, all showing sensory-seeking behaviors. But because SPD isn’t a billable diagnosis, my daughter does not qualify for treatment under our insurance because she doesn’t have a ‘primary’ diagnosis, like autism or ADHD. In spite of out-of-pocket occupational therapy confirming that OT helps her. How can it be over-diagnosed if it’s not even a billable diagnosis? Yes, we all have sensory needs. The fine line is whether or not those needs interfere with your ability to function in daily life. For my daughter, they do.”
I can say the same is true for my daughter.
For those of us who have seen the benefits treatment has provided for our kids, it’s hard not to get frustrated as this debate continues.
The only thing I know for sure is that occupational therapy has helped my child immensely.
Even as I continue to find lovies scattered throughout our house.