100 Countries Collaborate to Improve Quality of Services for Autism Therapy
PHILADELPHIA – Not all children with developmental disabilities across the world, including autism, have access to the same therapeutic interventions that could help them lead fuller lives that are more independent. An international collaboration led by a group at Thomas Jefferson University, is working to make assessment tools – a critical aspect of successful therapy – freely available across many languages as well as culturally appropriate.
“A thorough assessment helps us develop reliable, personalized interventions,” says Dr. Roseann Schaaf, PhD, professor in the department of occupational therapy at Jefferson, and director of the Jefferson Autism Center of Excellence “But there are few validated assessments available that provide information on sensory integration, which is one of the most sought after therapies for autism.”
Children who have difficulty processing and interpreting sensory information will often experience disruptions in developing skills and participating fully and successfully at home, at school and in their communities. “Some children with sensory integration challenges experience sensation – whether it’s sounds, sights, smells, or the ways things feel – in intense ways that can be confusing, irritating and distracting,” says Dr. Zoe Mailloux, a collaborator of Dr. Schaaf’s and an adjunct associate professor of occupational therapy at Jefferson. Other sensory integration problems include difficulty perceiving sensory information from the body (such as knowing one’s body position) and planning and executing actions in a coordinated and efficient manner.
Occupational therapists specializing in sensory integration use individually tailored, sensory-rich activities to help individuals with autism and other conditions to be able to process sensory information more effectively so that they can successfully engage in their daily life. The therapy is based in play and activities that offer novel sensory motor challenges and experiences, increasing in difficulty and complexity as the child develops and overcomes challenges.
“Some of the signs of sensory integration problems can be subtle, such as having trouble sitting still, leaning on other people or avoiding some situations,” says Dr. Mailloux. “If you don’t know about sensory integration theory, it can seem as though children with sensory integration challenges are being stubborn, or that they are not paying attention.” However, in reality, she says, there may be an “invisible” underlying explanation. “We can help teachers, parents, and other caregivers understand these children, and how to help them, whether the diagnosis is autism or something else.”
Dr. Mailloux studied and worked with A. Jean Ayres, PhD, who developed sensory integration theory, tests and therapeutic equipment and activities in the 1960s through the 1980s. Dr. Mailloux, Dr. Schaaf and their colleagues began developing a new set of tests, the Evaluation in Ayres Sensory Integration, (EASI) which builds on the tests and concepts that Dr. Ayres developed through research that was conducted over 50 years. The EASI expands the age range of tests currently available, used 3-D printing technology to produce some of the assessment materials and has the benefit of being made available without cost.
For their current project, Drs. Schaaf and Mailloux are coordinating a massive effort to collect normative data on the EASI – which is comprised of 20 tests – so that it is both culturally relevant and translated for 20 regions across the globe. The main goal of the current project is to collect normative, or baseline data for each geographic or cultural-linguistic area so that results from the tests will be representative, and therefore, relevant, for children worldwide.
“We are inspired by the strong commitment shown by our international colleagues in helping to make the EASI representational and open-access,” says Dr. Mailloux. “We now have over 2,000 testers around the world. Everyone’s working on this as a volunteer.” Due to the COVID-19 pandemic, there has been a delay in collecting data, but even so, normative data on 2,500 children from nearly 100 countries have been recorded to date. When the project is completed, the research group expects to have tested 10,000 children, worldwide.
Dr. Ayres published her final set of tests, the Sensory Integration and Praxis Tests (SIPT) in 1989, just after her passing. Unfortunately, the cost of using the SIPT has been prohibitive to many. By developing a set of tests that represent children internationally, and housing the tools in an open-access repository, the researchers hope that therapists around the world will be able to access these tools so that children can be better understood and have access to appropriate and effective interventions.
“This enormous multi-national effort to standardize this therapy and offer access to it will also further validate sensory integration as a scientifically sound intervention,” says Dr. Schaaf. “It give us tools to quantify progress with collaborators across the world. That will be incredibly powerful.”
Before embarking on the international normative data collection, the researchers ran a pilot study on an earlier research version of the EASI tests, to ensure that they were feasible to administer and score consistently, clear enough to translate well and sensitive enough to differentiate typical from atypical performance. The results of this pilot study, showing strong reliability and validity of the tests, were published in the American Journal of Occupational Therapy (AJOT). A previous paper, documenting the development of the EASI, was published in AJOT in 2018.
“Occupational therapy using the principles of Ayres Sensory integration therapy is beginning to be accepted by the larger community of physicians, researchers and autism specialists,” says Dr. Mailloux. “This acceptance is largely due to the efforts of Dr. Schaaf and her team, who have rigorously tested and demonstrated the effectiveness of this approach.”
“Through this project, it is our hope that even more children across the world will be more fully understood, and guided toward reaching their fullest potential,” says Dr. Mailloux.