91原创

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鈥檚 PT services were canceled because school officials said he no longer 鈥渕et the criteria鈥� to receive PT. The (DSM) is used by healthcare providers and clinicians to diagnose autism. It鈥檚 also used by insurers and can serve as a gateway to benefits in public schools mandated by the . 

鈥淔rom the school鈥檚 perspective, if a student can navigate through the school building 鈥� in and out and upstairs and downstairs 鈥� they are 鈥榮afe,鈥� and they don鈥檛 need physical therapy services from school,鈥� said Fei. 鈥淭o receive insurance coverage for physical therapy, you need a doctor鈥檚 prescription, which is often only offered in the short-term after car crashes or sports-related injuries. It鈥檚 very hard to get a PT prescription for someone who has an autism diagnosis.鈥� 

Anjana Bhat, associate professor of physical therapy in the 91原创鈥檚 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: 鈥淵our child walks, and so he doesn鈥檛 need any physical or movement therapies.鈥� 

Fei and her children took part in Bhat鈥檚 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. 

鈥淓very time we evaluate a child and find motor difficulties, their parents say: 鈥榃hy didn鈥檛 anyone tell us about this? Why didn鈥檛 we do anything for so long?鈥� So that鈥檚 their frustration 鈥� they feel like they can鈥檛 make an argument for therapy for their child,鈥� Bhat said. 

The earlier therapies are implemented the better a child with ASD progresses. 

Bhat in March of 2022 in the journal Autism Research, owned by the. 

Bhat is now applying to the to modify the definition of autism in the DSM to include motor difficulties as a 鈥渟pecifier.鈥� 

There are two components to an autism diagnosis. The first is called 鈥渃riteria鈥� which includes social communication difficulties and restrictive and repetitive behaviors. The second is a 鈥渟pecifier鈥� that鈥檚 listed as a co-occurring condition.

鈥淐urrently, 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,鈥� Bhat said. 鈥淎 child could have autism with language impairment or autism with motor impairment. We are not saying that without motor difficulties, one cannot have autism.鈥�

Bhat鈥檚 push is based on her own studies and data from the that examined difficulties in thousands of children diagnosed with ASD with a .

鈥淭he data showed that of children who had criteria for autism, ,鈥� Bhat said. 鈥淎pproximately 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 than that in children with autism.鈥�

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. 

鈥淧romoting 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,鈥� Bhat said. 鈥淧Ts 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.鈥� 

For example, Fei鈥檚 son Ben has difficulty throwing a ball. 

鈥淪chool officials told me to register him for a sports clinic to learn those recreational skills since they鈥檙e not PT or physical education goals,鈥� Fei said. 

While changes to the definition are rare, precedent has been set. Many years ago, language impairment was added a 鈥渟pecifier鈥� to the definition of ASD, opening access to insurance coverage of speech pathology services for children with autism. 

If Bhat鈥檚 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.  

鈥淚f 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,鈥� 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鈥檚 movement study.  

鈥淢addie could not manipulate her body in the way other kids could. She struggled with holding yoga poses,鈥� Desilet said. 鈥淭hrough 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.鈥� 

Desilet also gained knowledge on how to better assist her child from Bhat and other parents. 

鈥淥nce 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,鈥� Desilet said.

Maddie partakes in adaptive physical education (PE) at school but hasn鈥檛 had any private PT services. 

鈥淭hey believe that next year, she probably won鈥檛 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鈥檛 progress as much,鈥� Desilet said. 鈥淭oo often, parents are told, 鈥極nly if it鈥檚 needed.鈥� We don鈥檛 do enough preventative work. If we get children to thrive, they鈥檒l need less services later in life.鈥� 

Bhat鈥檚 push to include motor difficulties as a specifier in the autism definition has drawn some criticism, sparking some experts to claim there鈥檚 to support the change. 

鈥淭heir counterpoints claim the child may not be motivated to do these skills or may not understand what鈥檚 being asked of them due to cognitive difficulties, and that鈥檚 why you see movement problems,鈥� Bhat said. 

She has since in the Autism Research journal and received several published letters of support.

鈥淲e make tasks very clear using visual and manual strategies often used in working with children with ASD,鈥� Bhat said. 鈥淲e know that only 20% of children with ASD have cognitive difficulty, the other 80% don鈥檛, and they can follow instructions and understand what鈥檚 being asked of them.鈥�  

Desilet is also a supporter of Bhat鈥檚 push to change the definition. 

鈥淲hen Maddie was first diagnosed with ASD, PT wasn鈥檛 even brought up. There was more of an emphasis on occupational therapy and speech, and you only know what information you鈥檙e given,鈥� Desilet said. 鈥淏ut movement is definitely something kids struggle with. Even figuring out how to bend over all the way confused Maddie. Her brain just doesn鈥檛 work to manipulate her body in the same way as a typically developing child. Working on that skill increases her other skills.鈥�

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.

鈥淎s much as I want to do things with them, they don鈥檛 want to listen or cooperate, and sometimes, I don鈥檛 make things fun for them,鈥� Fei said. 鈥淭he physical therapists are so much fun, and the movements are game-based, and their speech and tone make children feel happy. So, if there鈥檚 an opportunity, I definitely want them to receive this service.鈥�  

Both parents said enhanced physical coordination for kids with ASD would lead to better overall outcomes. 

鈥淭here are numerous studies talking about autism and how it impacts a person鈥檚 life, their behavior and neurological symptoms,鈥� Fei said. 鈥淭he gross motor deficits cause tantrums. Behavioral intervention is important, but their brain is really impacting their motor skills, and that鈥檚 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.鈥�

鈥淧T fell through the cracks, and nothing should fall through the cracks at this point. Research tells us enough, and we witness it enough,鈥� Desilet said. 鈥淜ids 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.鈥�