As autism diagnoses continue to rise, an alarming new statistic indicates that autism is now diagnosed in one out of every 91 children, instead of one out of every 150 children as previously thought.
The increase in autism diagnoses presents a significant challenge for school systems, which already face limited resources as they seek to educate children with the neurological disorder.
Autism affects a person’s ability to communicate and interact with others. It is a spectrum disorder that affects individuals differently and to different extents, and so while autism is defined by a certain set of behaviors–including lack or delay in spoken language, little or no eye contact, and repeated motions or words–one particular therapy or treatment will not work the same way for all children with autism.
Experts say autism is typically apparent around age three, but now pediatricians are checking children as young as 18 months for signs of the disorder–an indication, some say, of the condition’s alarming growth.
Organizations such as the Autism Society of America (ASA), Autism Speaks, the Autism Science Foundation, and Fighting Autism are campaigning for increased awareness, assistance, and research to help with the disorder.
Although the federal Individuals with Disabilities Education Act (IDEA) requires schools to provide educational services for students with autism and other conditions, "schools have to deliver on a federal mandate without having [adequate] resources," said Marguerite Colston, vice president of constituent relations for the ASA.
Colston said ASA is developing educational resources to help general-education teachers succeed with their students who have autism, and several companies now offer products and services that can help as well. In this Special Report, we’ll look at how schools can develop the capacity to meet this challenge head on, and we’ll examine some of the resources that are available to help them.
Focus on visual representations
New research from the Health Resources and Services Administration (HRSA) published in the journal Pediatrics surveyed slightly more than 78,000 parents of children ages 3-17 on whether doctors or other health care providers ever told them their child had an autism spectrum disorder (ASD). That study resulted in a 1 in 91 occurrence. The study attributed the increase in part to greater education about autism and improved medical ability in diagnosing the condition.
The Centers for Disease Control and Prevention (CDC) is working on a report, due out later this year, that places autism in about 1 percent of U.S. children. A CDC statement on autism, prompted by the HRSA study, said the organization could "confirm that updated preliminary data from CDC shows that overall prevalence findings are similar to those reported by HRSA, indicating that approximately 1 percent of children are affected with an ASD."
It’s important to note that the HRSA figures rely on parents’ reports, and the study found that 40 percent of those initially diagnosed with ASD "did not currently have the condition," which could point to a misdiagnosis. Still, the CDC’s statement of increased incidence, coupled with the HRSA study, suggests that autism cases are on the rise–most likely owing to an increase in the condition, as well as the medical community’s ability to better diagnose an ASD.
With the increase in autism diagnoses comes an increase in awareness and education about the condition, its effect on children and parents, and the challenges it presents to school districts across the nation.
"The broad spectrum of autism is really one of the key issues that gives people the biggest challenges," said Tracy Gray, director of the National Center for Technology Innovation and a managing research scientist at the American Institutes for Research. Gray said assistive technologies can help children with autism access educational materials and curriculum.
"If you differentiate between visual information versus auditory information, research indicates that children with autism tend to process visual information easier than auditory information," Gray said.
Using various types of technology, all with an emphasis on visual representations of information, might be helpful, Gray said. Objects, photos, and realistic drawings are all examples of visual representations that can be presented to children with autism using technology.
"It’s about offering support to students that reinforces their visual skills, rather than relying on their ability to decipher verbal cues," Gray said. "The whole notion of creating a structure where the student is able to learn a task and reinforce it through visual cues tends to be a strategy that has been effective."
But it’s also important to reinforce those visual representations with the written word, she said, because many children with autism do exhibit a high interest in letters and words and have the potential to be early readers. Taking those visual representations and connecting them with actions and words is where there appears to be some challenges.
Gray said a wide range of technologies, from a simple tape recorder or overhead projector to a more high-tech camera, computer, or text-to-speech device, can be used to help teach children with autism.
"Part of the challenge is for teachers with 25 to 30 kids in their class," she noted. "How much of their time can they devote to meeting the needs of a student with ASD?"
Social engagement, another area in which children with autism typically struggle, may be boosted when a student with ASD uses a computer.
"It is in some ways easier for [students with autism] to connect with the computer rather than people, because the underdeveloped social skills issues tend to be what is so daunting in an educational setting," Gray said. "But if they have the structure that’s provided by the technology, like a well-tested computer program, they do seem to respond in a very positive way."
Four key actions for schools
As autism diagnoses continue to rise, schools systems are likely to experience an influx of students who are diagnosed with autism, said Kevin Custer, chief executive officer of Virtual Expert Clinics Inc. and a member of the Autism Society of Colorado Board of Directors.
But four actions can help schools prepare to deal with that influx, Custer said.
First of all, general-education teachers need training on how best to support students with autism. Custer said just a few hours of training throughout the school year will help remove the mystery of autism for general-education teachers.
Second, classroom teachers should have evidence-based resources at their disposal to help them teach students across the full range of ASD–including research on what methods do (and do not) work with different types of students. The same behavior in two children with autism does not necessarily mean they have the same educational needs, Custer cautioned.
Third, schools need to form autism support teams in which both special and general-education teachers work closely together as they develop and carry out plans to teach students with autism. Such coordination will allow team members to observe what is going on in a student’s classroom, reflect on what’s working, and make adjustments if necessary, Custer said.
And finally, school administrators need to form partnerships with parents, working to build a positive relationship between parents of a child with autism and the school itself.
In a traditional classroom setting, a teacher is typically the expert on learning. In teaching students with autism, general-education teachers now find themselves in a different role. Parents read every autism resource possible, and they often bring treatments and intervention ideas to their child’s teacher, Custer explained.
"With autism, more likely the parent is the expert in the social and environmental triggers that cause the negative behavior, and the parents know how to mitigate them," he said.
The ‘I’ in IEP
One district that has adopted the team-based approach advocated by Custer is Vermont’s Rutland Public Schools.
Ellie McGarry, the district’s director of support services, and her staff strive to keep students with autism "fully included with their non-disabled peers to the maximum extent appropriate. We offer a continuum of environments, which begin with the regular classroom and then with pull-out programming along the way for varying amounts of time based on the individual."
Mirroring the national experience, McGarry said Rutland’s students with autism vary widely across the spectrum, underscoring the need for individualized programs.
"There is a reason the student’s plan is called an Individualized Education Plan," she said. "There is an ‘I’ in IEP."
She added: "Each child just has different characteristics, [and] the spectrum is so broad, so we can’t implement one single curriculum and plan for it to take care of ten students, because each one is so different."
McGarry said that a team–including a student’s parents, classroom teacher, special educator, an administrator, and other support personnel who are critical for the student’s success–should meet on a regular basis to develop a program based on that student’s individual needs.
In Rutland, special educators are responsible for anywhere from 12 to 20 students, not necessarily all with autism.
"That’s the other challenge before us–you have to get all your special educators trained with a broad spectrum of disabilities, one of them being autism," McGarry said.
"It is important to build a community around individuals with autism that will support them throughout their life. That is why educating them with their non-disabled peers to the maximum extent appropriate is so important–they build relationships with their peers, and their peers are there to support them within their community and throughout their life."
McGarry’s district creates coordinated service plans that involve the local mental health agency in order to make services available to students with autism. The mental health agency serves as an additional support for families of those students. The district also can access funds through the mental health agency for personal care assistants to help students with autism beyond the school day.
District staff attend one-day workshops and conferences to learn about how to work with students with autism, and the state education department co-hosts, along with the University of Vermont, a one-week institute on autism.
Rutland also has six staff members who are taking graduate-level courses, specializing in autism, in the Vermont Higher Education Collaborative, and McGarry said their training will help the district "immensely" over the next few years, because their expertise and understanding will go a long way with students who have autism.
In addition, 30 people in the district have been trained on a Picture Exchange Communication System (PECS), a system of visual representation that helps people with autism understand what others are saying and communicate their own thoughts, McGarry said.
"The stimulus money really helped us with this [training]," she said.
The American Recovery and Reinvestment Act allocated $12 billion in stimulus funding for IDEA, with half of that money disbursed last spring and the other half going to schools this fall. Schools have until Sept. 10, 2010 to spend the money, and suggested uses for the funds include buying assistive technology devices as well as training staff members.
Video modeling can help
Ontario’s Thunder Bay Catholic District School Board (TBCDSB) has approximately 8,000 students, and its current ratio of students with ASD is 1 in 134.
Joel Godecki, the district’s ASD project consultant, said the district has a fairly large waiting list of children who are being assessed for ASD before entering the school system.
"We have to be innovative and creative in supporting this increasing number of students identified with autism in our schools," Godecki said.
Ontario’s Ministry of Education has selected a handful of school districts, including TBCDSB, to work on a Collaborative Service Delivery Model for students with autism. The initiative began in 2007 and has made valuable headway in supporting the growing number of students with autism, Godecki said.
TBCDSB’s immediate challenge was training staff members on different strategies and therapies to use with students with autism, and then building the capacity to work as a team, with parents and administrators, to develop IEPs for each student, Godecki said.
"The education system needs to prepare for a paradigm shift of programming for students with ASD, and our Ministry of Education in Ontario has embraced the challenge," he said.
Technology has been extremely important in the district’s work with students with autism. TBCDSB’s assistive technology teacher educates district staff members about programs such as Boardmaker, Clicker 5, and Kurzweil 3000, which help address autistic students’ reliance on visual learning and their difficulty in learning phonetically.
One district educational assistant recorded video of students with ASD performing different tasks, such as getting a book out of a locker or getting on the school bus to go home. Students then watch these videos before the transition takes place, which helps the school day run much smoother, Godecki said.
This video modeling also is available to teachers and educational assistants to see exactly what routines look like with the students, and Godecki said it has become an incredible resource for the teaching staff, as well as keeping student schedules consistent.
"It’s impossible for a principal, a teacher, or a parent to have all the answers," said Godecki, who has spent 22 years in education. "It is through collaboration that there is strength to work as a team and tackle one concern at a time."
It’s for that reason, he added, that creating a school support team is absolutely critical–not only in supporting students with autism, but in helping their parents feel informed and supported. Godecki said he always tries to mirror a staff ASD training session with a training session for parents, so they, too, are kept up to date on the latest therapies, educational methods, and ideas.
"I find that the education system is no longer necessarily the expert–you have to include community agencies, parents, and need to bring everyone together," he said.
"This is my third year in this position, and coming from a classroom setting, it’s amazing how quickly we’re evolving and improving. It’s not easy, definitely, but I think as far as training and getting resources and people on board, it’s helping everyone."
Early intervention is important
Another thing that helps is diagnosing autism and intervening as early as possible.
A legislative autism review in Virginia discovered that early intervention among children with autism from ages 3 to 6 resulted in close to half of those children performing at typical or near-typical ability later on. In Virginia, that early intervention resulted in a nearly $200,000 cost savings, state auditors reported.
"The processes that we’re talking about aren’t unique–the challenge has been bridging out of special education and into general education," Custer said.
Many autism advocates and experts would agree that while diagnoses are increasing, schools would be serving even more children with autism if they could afford to. But because funding is tight, some districts undercount students with autism.
Custer recalled a meeting of superintendents in which one superintendent realized that, according to autism statistics, his district should have had 250 diagnosed students instead of the 150 his district counted. Conscious of that fact, the superintendent called his district’s special-education director and asked why students with autism had been undercounted. The director responded that the district simply could not afford to service the other 100 students.
Custer said he was not surprised by the new data indicating autism’s increased prevalence, mostly because data over the years have been trending that way.
"We’ll see more children diagnosed with autism, and if we can get early intervention, [the increase] won’t crush us," he said.