Changing the definition
Photo by Ashley Barnas January 31, 2023
Physical therapy professor pushes to change autism definition to include motor difficulties
Fei, a mother of three, has two children diagnosed with Autism Spectrum Disorder (ASD).
Her son Ben, 8, who also has weak core muscles attributed to autism, had received physical therapy (PT) since he was 2 years old. He was also diagnosed with motor coordination disorder at age 3, which extended his PT for an additional year.
In first grade, Ben’s PT services were canceled because school officials said he no longer “met the criteria” to receive PT. The Diagnostic and Statistical Manual of Mental Disorders (DSM) is used by healthcare providers and clinicians to diagnose autism. It’s also used by insurers and can serve as a gateway to benefits in public schools mandated by the Individuals with Disabilities Education Act.
“From the school’s perspective, if a student can navigate through the school building — in and out and upstairs and downstairs — they are ‘safe,’ and they don’t need physical therapy services from school,” said Fei. “To receive insurance coverage for physical therapy, you need a doctor’s prescription, which is often only offered in the short-term after car crashes or sports-related injuries. It’s very hard to get a PT prescription for someone who has an autism diagnosis.”
Anjana Bhat, associate professor of physical therapy in the University of Delaware’s College of Health Sciences, has been studying gross motor difficulties in children with ASD for years. Bhat said, too often, parents like Fei are told: “Your child walks, and so he doesn’t need any physical or movement therapies.”
Fei and her children took part in Bhat’s movement study in 2021, funded by a National Institutes of Health R01 grant. The study found associations between motor impairment, autism severity and comorbidities in children with ASD.
“Every time we evaluate a child and find motor difficulties, their parents say: ‘Why didn’t anyone tell us about this? Why didn’t we do anything for so long?’ So that’s their frustration — they feel like they can’t make an argument for therapy for their child,” Bhat said.
The earlier therapies are implemented the better a child with ASD progresses.
Bhat published her findings in March of 2022 in the journal Autism Research, owned by the International Society for Autism Research.
Bhat is now applying to the American Psychiatric Association to modify the definition of autism in the DSM to include motor difficulties as a “specifier.”
There are two components to an autism diagnosis. The first is called “criteria” which includes social communication difficulties and restrictive and repetitive behaviors. The second is a “specifier” that’s listed as a co-occurring condition.
“Currently, there are multiple specifiers like language impairments and intellectual impairments, and so we are asking that motor issues be included as a specifier and not part of the criteria for a diagnosis,” Bhat said. “A child could have autism with language impairment or autism with motor impairment. We are not saying that without motor difficulties, one cannot have autism.”
Bhat’s push is based on her own studies and data from the large-scale national SPARK study that examined difficulties in thousands of children diagnosed with ASD with a parent-report measure gauging motor difficulties.
“The data showed that of children who had criteria for autism, 87% had motor difficulties,” Bhat said. “Approximately 20% of children had intellectual impairments, and 60% percent of children had language disorders. Intellectual and language impairments are already part of the ASD specifiers, and motor issues are even more common than that in children with autism.”
Just 13% of families in the study received recreational therapies, and 30% received physical therapy. Eighty percent engaged in speech and occupational therapy (OT). In school settings, OT mainly focuses on fine motor skills and not gross motor participation and play on the playground.
“Promoting gross motor skills, social participation through play with peers, and improving physical activity at school and in the community is within the scope of pediatric physical practice, and PTs should be impacting children with autism in this way,” Bhat said. “PTs also need to be educated and trained to work with children with autism through didactic and clinical training to effectively treat children with ASD. Right now, this is a missed opportunity for many pediatric PT clinicians.”
For example, Fei’s son Ben has difficulty throwing a ball.
“School officials told me to register him for a sports clinic to learn those recreational skills since they’re not PT or physical education goals,” Fei said.
While changes to the definition are rare, precedent has been set. Many years ago, language impairment was added a “specifier” to the definition of ASD, opening access to insurance coverage of speech pathology services for children with autism.
If Bhat’s requested change to the ASD definition is approved, it would create a clinical pathway for children with autism to access PT, recreational therapy or gross motor therapy to improve their quality of life.
“If diagnosticians like neurologists, psychologists and pediatricians are made aware that motor difficulties are part of the definition, they can administer screening tools and refer the patient for a PT or OT evaluation to start the process and that would be a covered service,” Bhat said.
The lack of available therapies has led to frustration for parents like Megan Desilet of Middletown, whose 8-year-old daughter Madison was diagnosed with ASD. Maddie and Megan also took part in Bhat’s movement study.
“Maddie could not manipulate her body in the way other kids could. She struggled with holding yoga poses,” Desilet said. “Through participating in the study, we saw tremendous growth in all areas, and it was a free resource. She can now do jumping jacks, balance on the balancing beam, and use her plastic archery set and hit the target.”
Desilet also gained knowledge on how to better assist her child from Bhat and other parents.
“Once she started hippotherapy, or equine-assisted therapy, we started noticing a huge growth in her fine and gross motor skills. At school, they noticed huge leaps and bounds, and her speech also started getting better,” Desilet said.
Maddie partakes in adaptive physical education (PE) at school but hasn’t had any private PT services.
“They believe that next year, she probably won’t need adaptive PE anymore, but I see how she could still benefit from it. So, my fear is when they take resources away, she won’t progress as much,” Desilet said. “Too often, parents are told, ‘Only if it’s needed.’ We don’t do enough preventative work. If we get children to thrive, they’ll need less services later in life.”
Bhat’s push to include motor difficulties as a specifier in the autism definition has drawn some criticism, sparking some experts to claim there’s insufficient evidence to support the change.
“Their counterpoints claim the child may not be motivated to do these skills or may not understand what’s being asked of them due to cognitive difficulties, and that’s why you see movement problems,” Bhat said.
She has since responded to the criticism in the Autism Research journal and received several published letters of support.
“We make tasks very clear using visual and manual strategies often used in working with children with ASD,” Bhat said. “We know that only 20% of children with ASD have cognitive difficulty, the other 80% don’t, and they can follow instructions and understand what’s being asked of them.”
Desilet is also a supporter of Bhat’s push to change the definition.
“When Maddie was first diagnosed with ASD, PT wasn’t even brought up. There was more of an emphasis on occupational therapy and speech, and you only know what information you’re given,” Desilet said. “But movement is definitely something kids struggle with. Even figuring out how to bend over all the way confused Maddie. Her brain just doesn’t work to manipulate her body in the same way as a typically developing child. Working on that skill increases her other skills.”
Fei also said she hopes Bhat is successful in altering the definition. While she ensures her kids take part in daily workouts, stretching at home and extracurricular activities like swimming and Taekwondo, twice weekly PT would also help.
“As much as I want to do things with them, they don’t want to listen or cooperate, and sometimes, I don’t make things fun for them,” Fei said. “The physical therapists are so much fun, and the movements are game-based, and their speech and tone make children feel happy. So, if there’s an opportunity, I definitely want them to receive this service.”
Both parents said enhanced physical coordination for kids with ASD would lead to better overall outcomes.
“There are numerous studies talking about autism and how it impacts a person’s life, their behavior and neurological symptoms,” Fei said. “The gross motor deficits cause tantrums. Behavioral intervention is important, but their brain is really impacting their motor skills, and that’s impacting their behavior. We need to shift our focus to study more of the gross motor skills and movement, and then focus on their neurodevelopment or neuro-interventions rather than behavioral interventions.”
“PT fell through the cracks, and nothing should fall through the cracks at this point. Research tells us enough, and we witness it enough,” Desilet said. “Kids deserve to have every opportunity to expand in all aspects including gross motor skills. These skills benefit them socially, physically, and help them understand their body and space. Every skill they learn opens up neuropathways, so a focus on that area is much needed.”
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