Dr. Barbara Payne of Hyde Park, N.Y., instinctively knew something was not quite right with her infant son, Jacob, but she couldn’t put her finger on what it was. She believes that it was her motherly instincts more than her experience as a pediatrician that made her suspicious. “In retrospect, things are much clearer,” she says, “but back then, I used to think — I just don’t get this kid.”
Dr. Payne reports that although Jacob’s early childhood benchmarks, such as smiling and rolling over, were normal, there were other, more subtle things that made her think something was wrong. She says, “He had these rhythm disturbances… how to soothe him was different.” She also points out that if you realize your child doesn’t experience joy with his peers, this may be an indicator of a problem.
Jacob received early intervention services. However, many children with Asperger’s do not. Their disability often goes unnoticed because many Asperger’s children read early, speak early and don’t exhibit obvious disabilities as preschoolers. Consequently, these kids often enter the school community with no history or recommendations for placement.
What is Asperger’s Syndrome?
Asperger’s Syndrome is one of five Pervasive Developmental Disorders (otherwise known as Autism Spectrum Disorders). According to the Autism Society of America (ASA), children with Asperger’s differ from those with autism because Asperger’s symptoms are less severe and there is an absence of language delays. The ASA points out that “to the untrained observer, a child with Asperger's may just seem different.”
Children with Asperger’s Syndrome possess normal to above normal intelligence and language development, but also exhibit significant deficiencies in social skills development. There is no speech delay in Asperger's, but the child’s speech patterns may be unusual (too formal, too loud or high pitched). Asperger's children frequently have delays in motor skills and may appear clumsy or awkward. They have narrow interests and repetitive behaviors; for instance, the child may be obsessively preoccupied with trains or maps.
Children with Asperger’s are often misdiagnosed with other conditions, so it is important to find an experienced specialist who will administer the proper assessments. An accurate diagnosis can only be made after a trained professional has observed the communication, behavior, and developmental skills of the individual. Robert Putnam, Ph.D., a board-certified behavior analyst and senior vice president of school consultation at the Massachusetts-based May Institute, suggests that schools administer the Walker-McConnell Scale of Social Competence and School Adjustment to assess the extent of the student’s social skills deficits.
Unique learning difficulties
These students have difficulty with organization, following verbal directions, abstract interpretation of language and literature, problem solving and handwriting. Many have sensory sensitivity (they are bothered by bright lights, loud noises or touch), so large and noisy school assemblies can be a recipe for disaster.
The Asperger’s child often enters school with no early intervention services — because of a delayed diagnosis, or no diagnosis at all. Schools also often are hesitant to provide services if the child’s academic performance is adequate. Kathleen Edwards, M.Ed., a special education consultant and director of Starpoint School (a laboratory school for learning disabled children ages 6 to 11) at Texas Christian University, points out that it is imperative that schools look into the social and emotional needs of the student — not just his grades. Teachers who aren’t familiar with Asperger’s may misinterpret a student’s behavior as simply defiant. Edwards insists, “There needs to be a shift in the mindset of faculty members. Children with autism spectrum disorders are incapable of being manipulative. Usually their misbehavior is due to confusion and disorientation.”
Ideal classroom environment
An Asperger’s child probably does not belong in a special education classroom where students are struggling with the curriculum. On the contrary, these students are often considered “gifted” by the school community. However, a mainstream approach (the placement of students in classrooms with the general population) can produce its own set of problems.
Dr. Putnam believes that mainstreaming is ideal for those students who can handle it. Children with Asperger’s need to learn to function independently, and learning to function in the school setting is a precursor to real life. He also believes that staff education and consultation is the key to success. He explains that Asperger’s students must be placed in a classroom environment that will adjust to the student’s needs, as opposed to the other way around.
“The classroom should allow for a high level of social interaction,” he says. The student should receive social skills instruction on a regular basis. Desks should be placed in a circle or in groups (as opposed to rows). The teacher should be able to work well with “visual learners”, providing visual cues and tools whenever possible instead of strict verbal instruction. Study and organizational skills should be incorporated as a regular part of the curriculum.
Teachers should also take advantage of the child’s obsessive interests instead of fighting them. Dr. Putnam offers the following example: “If the child is fixated on clocks, for instance, the teacher should use books and other classroom materials that have clocks as a theme in order to reach the student.” The teacher should also be aware of the child’s sensory sensitivities and change his physical environment if necessary. A child with Asperger’s might not be able to tolerate school bells or the hum of a fluorescent light. Moving the child’s desk to another area of the classroom where sights and sounds are less intrusive might solve the problem.
Yet the ideal classroom environment, an informed and flexible teacher, and a school equipped with the appropriate resources are not always available. Valerie Paradiz, Ph.D., author of Elijah’s Cup and director of ASPIE (The School for Autistic Strength, Purpose, and Independence in Education in Boiceville, NY) has many concerns about Asperger’s students functioning well in a mainstream setting. Dr. Paradiz explains, “These students are often targets for bullies, because they quickly get pegged by peers as outsiders. In addition, social skills and organizational issues start to wear down their self-esteem.” Dr. Paradiz also notes that although there is a tremendous need for social skills support, “the student might become totally dependent on his aide and self-independence can subsequently be undermined by that relationship.” She is concerned that “the child has to fail miserably before he gets help.” At ASPIE, children are taught life skills and how to represent themselves to the public. Dr. Paradiz explains that self-advocacy and the understanding that one’s disability is not a disease or tragedy should be emphasized on a regular basis to build up the child’s self-esteem.
Parents need to become expert navigators and advocates for their child. Some children will be able to handle a mainstream setting, but in these cases the proper classroom environment is essential. Others will need to be in a special school. Dr. Paradiz warns, “Any kind of early signs of depression is a red flag.” If the child becomes withdrawn and depressed, something is not working.
Problems beyond elementary school
Even if a child has handled a mainstream setting in elementary school, the logistics of the middle school setting might prove to be too much for a student with Asperger’s. The student is now expected to change classrooms several times a day, and is faced with several different classroom environments and teaching styles. Dr. Paradiz explains that “the changing of rooms and heightened social intensity of kids that age can compound the stress level for the Asperger’s child.”
Dr. Putnam concurs, “The situation gets more complex at the middle school level. The child may need additional staff support. The child might have problems with anxiety or depression, so it’s also very important for staff to communicate amongst themselves.” There should also be an adult (someone present during school hours) who serves as an advocate for the child.
Support and Information for Families and Educators:
To acquire more information about Asperger’s Syndrome and to learn where to find support and services for your child with Asperger’s, contact:
Autism Network International (ANI): An autistic-run organization — self-help and advocacy for autistic people. Philosophy: The best advocates for autistic people are autistic people themselves. P.O. Box 35448 , Syracuse, NY 13235-5448; http://ani.autistics.org
Connections Center and RDI Programs: Connections Center, founded in 1995, provides full assessments and treatment services for Autism, Asperger’s Syndrome, Pervasive Developmental Disorder (PDD), Non-Verbal Learning Disability (NVLD), and many other neuropsychiatric conditions. Relationship Development Intervention (RDI) is a parent-based clinical treatment for individuals with autism spectrum and other relationship-based disorders. This site offers lots of information and resources for parents. www.connectionscenter.com
MAAP Services: A nonprofit organization dedicated to providing information and advice to families of “more advanced individuals with Autism, Asperger's Syndrome, and Pervasive Developmental Disorder (PDD).” P.O. Box 524, Crown Point, IN 46307; (219) 662-1311; www.maapservices.org
GRASP: The Global and Regional Asperger’s Syndrome Partnership, Inc.: Support groups for parents of children with Asperger’s and for adults with Asperger’s. www.grasp.org; E-mail: [email protected]
O.A.S.I.S.: Online Asperger’s Syndrome Information and Support: www.udel.edu/bkirby/asperger
Asperger’s Syndrome Coalition of the United States, Inc. (ASC-U.S.); P.O. Box 49267, Jacksonville, FL 32240-9267; (904) 745-6741