IAN 'Back to School' Report
Date First Published: August 25, 2008
It's late summer and time for all those "back to school" activities. For families with a child on the autism spectrum, that not only means buying backpacks and pencils, but also may include reviewing your child's Individualized Education Program (IEP), seeing about that "personal assistant" your child was supposed to be assigned, or preparing materials which explain your child's strengths and needs to a new team of teachers, aides, and other school personnel. Children may feel anxious about the new year, and parents often do, too, even more so if it's a time of major transition such as beginning kindergarten, middle school, or high school.
"Back to school" often can be a time when parents-as-advocates must go into high gear, assessing the new situation and deciding -- after giving teachers and students a chance to settle in -- whether the new set of circumstances and supports is working for their child.
As the largest online autism research effort in the United States, the Interactive Autism Network (IAN) collects information from families about their child's autism spectrum diagnosis, treatments, medical history, and education. We thought "back to school" would be a good time to update our earlier reports on what families have told us about their children and school.
School Setting: Public vs. Private
One question we have been asking families is "What type of school (or preschool) does your child attend?" As of mid-August '08, parents of 5,935 children with ASD have answered that question. The majority report that their child attends either a regular public school (57%) or a specialized public school for children with special needs (23%). An additional 5% say their child is in a regular private school, while 9% say their child attends a specialized private school. Only 3% report that they home school their child. (See Figure 1.)
Classroom Setting: Regular vs. Special Education
No matter the school setting, how much time do children spend each day in a regular vs. special education classroom? Regular classrooms offer "typical peers" and an opportunity to learn to adapt to the demands of a setting that does not accommodate (much) to a child's special needs. Special education classrooms offer staff trained to understand and work with children with particular needs, a smaller class size, and the ability to adapt both academics and the environment to meet students' needs. (For example, a classroom where children have sensory issues may be kept quieter, with softer lights and less distracting bulletin-board clutter on the walls.) Depending on the school district, choices may be extensive or limited. Either way, parents struggle to decide which setting, or combination of settings, is best for their child.
In Figures 2 through 4, we illustrate what parents have reported regarding time spent in which type of classroom setting for children with autism, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger's syndrome.
In addition, we explored how the proportion of time spent in a regular vs. special education setting changed over the years for children with ASD. We found that spending most or all of the day in a special education setting was most common during the preschool and kindergarten years. More children reported spending at least half the day in regular education classes during the elementary years, although this decreased again somewhat during the middle- and high-school years. (See Figure 5.)
Why might this be? Perhaps part of the answer is the growing social complexity faced by older children who attend regular classes with their peers. The social nuances at play in a middle- or high-school setting may be more challenging for children with ASDs than those faced in elementary school. There may be increasing maturity and competence, but also an increasing need for a sheltered part of the day.
In addition, fewer families of older children are participating in IAN. (See Figure 6.)
We have less information about older children, and that makes our analysis less certain. Are the highest-functioning teens simply missing from our sample? Or do our data reflect a true shift from a more inclusive setting back to a more restrictive one for some students? Further study -- and more participating teenagers -- will be needed before we can answer that question. (Please encourage families of older children with ASD to join IAN!)
Use of One-on-One Aides
A personal assistant, or "one-on-one aide," is a person assigned to a specific special needs child, whether in a regular or special education setting. Generally, the aide is there because a child needs more individual attention than the classroom teacher can give. The role of aides varies widely, depending on a specific child's needs and grade level. An aide may help a child with poor executive function keep track of materials and assignments, take a child with frequent meltdowns out of the classroom when needed, or bring a child who often gets distracted back to task.
Whatever roles they play, it is clear from families' reports to IAN that one-on-ones are in widespread use across the autism spectrum and across grade levels. (See Figures 7 and 8.)
Treatments Often Provided by Public Schools
Some of the most frequently used interventions for autism are those provided through the public schools or early childhood programs. This is no surprise. While legislation in some states has increased the number of therapies insurance companies will cover, most families have been faced with paying for therapies themselves, or making the most of what is provided through public programs.
As children head back to school over the coming weeks, we thought our readers might be interested in seeing to what extent families participating in IAN are obtaining these key treatments through some sort of public program. As is shown in Figures 9 through 12, below, 81% of Speech and Language Therapy, 76% of Occupational Therapy, 69% of Applied Behavior Analysis (ABA), and 62% of Social Skills Training are provided through public funding of one kind or another. It is clear that early childhood programs, covering ages zero to three, and the public schools, covering ages three to twenty-one, provide key therapeutic interventions to a great many children on the autism spectrum.
Resources: Education and Related Issues
We wanted to share some important resources for learning more about issues surrounding education.
- Autism Speaks' School Community Took Kit -- This packet of incredibly helpful information is designed to communicate how students with autism can be best supported and included in the school community. You can access this on the web by chapter or download the entire 203-page document.
There are special sections in this packet addressed to nearly anyone you can imagine your child might encounter at (or getting to) school: Bus drivers and transportation supervisors, custodial staff, general education and special area teachers, lunch and recess aides, office staff, paraprofessionals (that is, classroom aides), peers, school administration and principals, school nurses, and school security.
- Beach Center on Disability -- This website provides a detailed explanation of the Individuals with Disabilities Education Act (IDEA), the federal law that governs the provision of early intervention, preschool, and school-aged services. The website includes an explanation of IDEA's core principles, such as "nondiscriminatory evaluation" and "least restrictive environment." These are all concepts and terms you should know as you work with school officials or attend IEP meetings on behalf of your child.
- Organization for Autism Research (OAR) -- This website provides some excellent materials to help parents and teachers, including "A Parent's Guide to Assessment" (by which they mean all the testing a child undergoes to receive an ASD diagnosis and/or school placement), "An Educator's Guide to Autism," and "An Educator's Guide to Asperger Syndrome." All of these can be found on OAR's Recommended Reading page.
In addition, OAR has produced a new video entitled Understanding Asperger Syndrome: A Professor's Guide. This video is intended to help professors understand the needs of their university students on the spectrum, and is a useful resource students with high-functioning ASD or Asperger's can access and share.
Good Wishes for Back to School
Whatever your child's autism spectrum diagnosis, age, or grade level, we wish your family well as the new school year begins. We hope that if you need any explanatory material about autism spectrum disorder in addition to that provided by the resources above, you will print out information from the IAN Community website to share with educators, administrators, and the rest of your team: