The Interactive Autism Network (IAN) initiative is the United States' largest online autism research project. Thousands of families across the country are answering questionnaires, over the web and from the comfort of home, about their child's diagnosis, treatments, and school placement. The project accelerates autism research not only by creating a shared national collection of autism data, but also by helping families find out about research studies being conducted in their area, eliminating one of the biggest bottlenecks in autism research: the time it takes for researchers to find study participants.
As a new school year approaches, we are pleased to present a report on children with autism spectrum disorders (ASDs) participating in IAN and education.
|IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks.|
|The big yellow buses are revving up their engines, and the new drivers are trying out their routes. It's nearly that time again – back to school! The beach towels and swim goggles get shoved back into the closet while store aisles fill with families looking for backpacks, lunchboxes, and school supplies.
For families with a child on the autism spectrum, the process of heading back to the classroom is even more involved. Is the Individualized Education Plan (IEP) in place and satisfactory? Is the school team-in-waiting prepared to meet a child's needs?
This seemed the right time of year to explore what families participating in the IAN Research project are telling us about the educational situation of their children with an autism spectrum disorder (ASD). What kind of school placements do children have? How many have opportunities for inclusion? What special education codes are they assigned? How many receive the assistance of a one-on-one aide?
Please Note: These Findings Are Preliminary
(Please note: IAN is still recruiting! We welcome the participation of U.S. families of children with ASD of all ages, and now have online questionnaires for adults with ASD, as well.)
|What types of schools were children with ASD participating in IAN Research attending? Over 80% of them were enrolled in either a regular public school or a specialized public school. About 13% were attending a private school, while 3% were home schooled. (See Figure 2.)
Special Education Code
One question we asked parents was: “What is your child's current special education code?” We were interested in finding out how many children were receiving services under the “autism” category as opposed to others like “speech and language impairment” or “developmental delay.” About 76% of participating children with ASD were receiving services under the “autism” code. (See Figure 3.)
|Why wouldn't all children with ASDs receive services under the code of “autism”? We suspect there are two major reasons for this. First of all, the Individuals with Disabilities Education Act – the federal law governing how children with disabilities receive educational services -- does not require a firm code before the age of 91, although states can require one earlier. In some cases, younger children may be keeping a more general designation of “developmental delay” until they reach the age when a firmer designation is required. In addition, children with ASD diagnoses other than autism may not always receive the autism designation. (See Figure 4.)
|PDD-NOS – Pervasive Developmental Disorder Not Otherwise Specified
PDD – Pervasive Developmental Disorder (generic)
ASD – Autism Spectrum Disorder (generic)
Through the comments that IAN questionnaires invite participants to share, some parents told us of schools refusing to accept the autism spectrum diagnosis, particularly if the condition identified was something other than classic autism. One mother wrote, “The woman with the school system has never heard of Asperger's Syndrome and so she insists on putting him as ‘Other Health Impaired' instead of ‘Autism.' Every year I have to explain to his new teachers that he has Asperger's and give them information on his disorder.”
Another mother said the school had said her child might be somehow better off without the label: “They said that to give my son an autism code would predispose teachers to viewing him a certain way. He is high functioning and they didn't want teachers to have an ‘attitude' about him. However, his disability is hidden and they often expect more from him than he can provide. This is a catch 22.” Of course, it is likely that a school that has not assigned an autism code will not have to provide as many supports and services either. The entitlements of IDEA do not apply unless a child falls under one of the several designated codes. Many families struggle with this same core dilemma: a label can be both stigmatizing and a ticket to more extensive help. Parents who once dreaded a label can find themselves fighting for it once they better understand the law.
“Inclusion” is the practice of educating children with disabilities alongside their non-disabled peers, to the potential benefit of both. The current strong emphasis on inclusion is in part a response to a past when total exclusion or even institutionalization was the norm. It is also a key element of IDEA which “stipulates that learners with disabilities, including those with ASD, are entitled to educational services in maximally normalized settings that offer the greatest opportunities for contact with typical peers.”2
Interested in whether children with ASDs were able to spend time with non-disabled children during their school day, we asked parents: “Does your child have classroom opportunities for inclusion with typically developing peers?” As shown in Figure 5, nearly 80% reported that their child had some opportunity to spend time at school with typical peers, although the amount of time varied a great deal.
|Some children spent only a limited time “included,” perhaps in home room, at recess, or in “specials” such as music, art, or gym, while others spent the majority of their day with typical peers. Opportunities for inclusion were rich or limited depending on the size and circumstances of the school, the supports available, and the degree to which a child was struggling with challenging behaviors, like aggression, anxiety, or tantrums. “Typical children come into my son's classroom to interact with him and the other autistic students, but he does not go into their classroom due to his severe behaviors and extreme difficulty with transitions,” said one father. In addition, sometimes a typical classroom, with its sensory overload and social complexities, could be stressful for a child with an ASD. “My daughter spends 30 minutes on a good day with her peers,” said one mother. “Most days, though, she doesn't get into the general ed room. She is so easily overwhelmed and over-stimulated that she doesn't spend more than 10 minutes there.”
Some parents reported that inclusion had led to positive gains. “This has greatly improved our daughter's language skills and improved her ability to converse with others,” an enthusiastic father said. Parents mentioned a variety of ways the school tried to facilitate children with disabilities meeting and interacting with typically developing peers, from formal programs where the children read a book or ate lunch together, to less formal opportunities to mingle at recess or on field trips. Some even had an official peer mentor or buddy program.
Other researchers have noted that parent responses to inclusion are mixed, 3 4 and our parents also made both positive and negative comments on the topic. On the positive side, there was a hope for better academics coupled with higher expectations for achievement in the general education classroom, the possibility of good social models in the typically developing children, and practice dealing with a non-sheltered world. On the negative side, there were fears of bullying, exclusion, less individual attention, and an environment that could be too overwhelming, both in terms of sensory input and social demands. What seems clear is that parents fight to strike the right balance: exposure to typical peers, but in a situation that is not distressing for their child, hoping that opportunities for inclusion will increase as the child learns to communicate, interpret the social world, self-regulate, and cope.
The issue of one-on-one aides is related to the issue of inclusion. These specially assigned adult helpers, also known as “personal assistants,” provide individual support to a child with a disability. How many children with ASD participating in IAN are assigned this kind of special help? We found that fully 30% of school-aged children had a full-time aide, while 18% had a part-time aide. (See Figure 6.)
|One-on-one aides, like aides or paraprofessionals assigned to a class rather than a specific child, perform many functions.5 They may help keep a child organized, monitor distress and take him or her out of the classroom in the event of a meltdown, bring his or her attention back to task, make sure he or she does not wander, or facilitate social interaction. Often, the goal is to “fade” the aide as the child becomes more independent, and to make sure the aide does not over-assist or get in the way of potential social encounters with peers. “My request was that the aide be used for the classroom (my son being a priority) so he will get to know his non-disabled peers and have to communicate with them rather than with the aide all day,” one mother commented. “Also, I requested that the aide keeps his work on target, but he does his own work.”
Parents often advocate for a one-on-one, hoping that this extra assistance will make inclusion in a typical classroom possible. Schools sometimes resist, struggling with budgetary issues, or with finding qualified personnel. “I fought for 3 years to have approval, and then, when it was approved they hired someone not qualified,” said one frustrated mother. Some parents said their child was sharing an aide with another special needs child, or that there were several aides in the room, but they were not “one-on-ones.” This was often the case in smaller, special needs classrooms. Sometimes a different child was assigned the one-on-one, but other children benefited from the availability of an extra adult in the room. Some parents who felt their child needed this extra help but were unable to obtain it, turned to home schooling as an alternative. “I am my daughter's aide,” said one mother. “This is why I home schooled her. The school did not recognize my child had severe delays, yet she was failing almost all classes, even gym.”
As we examined the use of one-on-one aides by special education code, it appeared that children who had received an “autism” designation were the most likely to receive such assistance, as illustrated in Figure 7.
Challenges and Celebration
There are many challenges faced by children on the autism spectrum and their families, but that just makes each child's progress the more worthy of celebration. Many parents told us how joyful they were at each new skill gained. “In the beginning, when her former pediatrician didn't really listen to my concerns, it was very difficult,” said one mother. “But my daughter is now in an awesome school that has helped her immensely!” “I am fortunate to reside in a town that has great services through the school district,” said another. “I have had to learn how to be more vocal regarding my son's education. Luckily, I have established relationships with the entire district and have a good rapport with them to find solutions to problems that are for the good of all parties involved.”
The IAN team wishes all of you good fortune as the school year begins, with all its excitement and challenges, and a beneficial collaboration with your school, public or private. We offer some resources below in case you need any extra information or help at this special time of year.
If you have comments or insights about these preliminary findings, please share them in the research-focused IAN Community Discussion Forum. Your feedback may influence future research.
1. IDEA law: http://idea.ed.gov/download/statute.html
[[STAT. 2652]] SEC. 602. NOTE: 20 USC 1401. DEFINITIONS. (3) Child with a disability.—
A) In general.--The term ‘child with a disability' means a child—
B) Child aged 3 through 9.--The term ‘child with a disability' for a child aged 3 through 9 (or any subset of that age range, including ages 3 through 5), may, at the discretion of the State and the local educational agency, include a child--(i) experiencing developmental delays, as defined by the State and as measured by appropriate diagnostic instruments and procedures, in 1 or more of the following areas: physical development; cognitive development; communication development; social or emotional development; or adaptive development; and (ii) who, by reason thereof, needs special education and related services.
2. Simpson, R.L., de Boer-Ott, S.R., & Smith-Myles, B. (2003). Inclusion of learners with autism spectrum disorders in general education settings. Topics in Language Disorders, 23(2), 116-133.