Recently, the parents of Max*, an 8-year-old boy with autism, came to me with concerns about how their son has been struggling during this school year. Up to this point, he had been doing well with special education services that included speech and language therapy, social work support to facilitate interactions with his peers, and a shared paraprofessional that helped him to stay on task and to shift between classroom activities.
Because he had been doing so well and meeting his goals, services were discontinued. He was now struggling in school and his parents wondered how they should proceed. In the midst of these struggles, they expressed concern for how he is perceived by his peers.
These are common concerns I hear from parents, and the dilemma is how to support students with autism and their families in an era of finite resources. Initiatives at the student and school district level provide important ways to support children with autism throughout their school years.
Some high school students are making a difference for their peers with autism. Project Unify is a student-run program in North Carolina designed to ensure both students with and without autism have the same opportunities for high school experiences. This is just one example of a growing number of programs designed to promote awareness and inclusion of peers with autism, including the School Community Tool Kit by Autism Speaks® that provides ways to promote positive interactions and opportunities between all students.
Of the 6.4 million students between the ages of 3 and 21 who receive special education services in the United States, approximately eight percent receive them under the eligibility determination of autism. Not all of them have access to the same school experiences.
Academics and socialization with classroom peers require more awareness and proactive intervention. Autism is a complex developmental difference that results in difficulty with social communication as well as fixed interests, repetitive behaviors, and hypo- or hypersensitivity to sounds or textures. These patterns impact how they learn in school.
However, the cost prohibits many from having an optimal learning experience. Researchers from Harvard and the University of Michigan found that children with autism have $8,610 greater school costs. The economic effect for schools is significant.
The dimensions of autism differ by individual, and each child requires individual understanding. The range of special education services that are provided under the Individuals with Disabilities Education Act are described by the Interactive Autism Network, and services can range from full-time special education to social skills support.
Autism can impact the academic environment in various ways. For example, children with autism have a core challenge in joint attention, which means that they can have difficulty shifting attention between objects, peers, and teachers.
For example, it can be difficult for a child with autism to transition between classes and also to move from individual work to a classroom discussion. Within a transition between classes are many smaller transitions, including getting materials for the next class and coping with unexpected changes in hallways and with locker combinations.
Difficulty with social interactions and communication can also mean that classroom participation is difficult. Repetitive behaviors and restricted interests - such as walking in patterns or being intensely interested in space or transportation - may also interfere with classroom participation and learning. More research is required to understand why they occur and how they should be addressed when they affect learning and social opportunities.
The educational system is often overwhelming for parents, and school districts are faced with serving the individual needs of many children. Despite the best of intentions, it is a recipe for conflict. This is in addition to the stress parents experience in terms of disagreement about the diagnosis itself and access to private resources that are often determined by insurance and geography.
Professor at Claremont McKenna College and author Dr. John J. Pitney describes the experience of individuals with autism in his 2015 book, The Politics of Autism: Navigating the Contested Spectrum. He writes:
"Some are finding a voice. Those who lack a voice are finding the shelter of the educational system gone and the future very daunting."
The future should not be so daunting - neither for individuals nor families. Parents and schools can take concrete and collaborative steps to facilitate the best learning environment for a child.
Parents and teachers can identify strengths. For example, parents often tell me that their children with autism are strong in the area of learning to identify letters, numbers, shapes, and colors - the early academic skills. They may tell me that their child has a great memory. These are areas to build on for future success.
Understand common challenges that may arise in children with autism. While they are often able to recognize words at an early age, understanding language and the back and forth nature of conversation and their roles in peer relationships are often difficult. As they progress in school, understanding what they read and responding to inferential questions are often more of a challenge. Teachers, therapists, and paraprofessionals can be and often are enormously helpful in facilitating interactions with peers and proactively providing academic support in these areas.
Pay attention to patterns of learning and behavior. Challenges can be missed in the school setting because students are reaching their early academic benchmarks such as identifying letters and numbers and learning to recognize words. By the time that this becomes an issue at school, parents are often in the position of playing "catch-up" in order to ensure their children are adequately challenged but also have the very specific supports they need to be successful. They may not be missed if a child is having significant behavior problems, and everyone wants the behaviors to improve. In these situations, the "why" of the behavior is critical to understanding what to do the next time it happens.
Shift when necessary. If children are not making progress -- even at their own pace -- it is time to rethink the best teaching approach and learning environment for them.
To be sure, every child has a unique learning style. Countless educators, therapists, paraprofessionals, and parents are already working hard to support children with autism with limited support. With a growing and aging population of children with autism, more autism-specific learning consultants are needed in all districts to think outside the box for ways to work in cost-effective ways.
Autism is one area of need, and there will never be enough financial resources. However, creative thinking and collaboration between all parties about using the available resources and being open to different ways of understanding the world do not cost anything.
Students with autism already lose access to school services near their twenty-second birthday, and resources for adults with autism are scarce. We know that individual and early intervention works for children with autism, and these support need to continue throughout the school years.
Increased awareness about how children with autism learn as well as collaboration between all parties - students, parents, clinicians, and educators -- are starting points for innovation in special education.
*Details have been changed for privacy.