“Suppose I, an ordinary person, am walking alone beside an icy isolated river and see someone drowning. I have two options: I can jump in and try to save him (risking death myself) or I can agonize on the shore. In the first case I am a hero; in the second a coward. There is no way I can remain what I was before – an ordinary person. As the mother of a profoundly retarded child, I felt I was in the same position.”
Friends and family of children with Asperger Syndrome often feel as if they are in the position that Helen Featherstone describes above in her book, A Difference in the Family: Life with a Disabled Child. They are involved with children who cannot fend for themselves, children who need advocates to stand up for them. A child’s call for help means that they can no longer be “ordinary people” without a choice to make. If parents choose to advocate, it means taking on a job that will deeply affect their lives.
The task of advocacy takes many forms on the individual to community to societal levels. As one advocate wrote, advocacy can range from “asking a neighbor to turn down a radio to demanding a full-time specialist to help your child in school” to lobbying Washington for more effective services.
Advocacy in Everyday Life
Advocacy on the everyday level is often about simply educating people about Asperger Syndrome, a disorder most people have never heard of. It is explaining the same things over and over every time a new person enters the child’s life.Jonathan is not being willful, selfish and disobedient: these behaviors are a result of his disorder. Sarah wants to make friends with you, she just does not know how. Asperger Syndrome is developmental disorder part of the autism spectrum. Yes, Taylor is very bright and academically gifted, but he really does need special services at school.
Advocacy can be about always having a playgroup at your house so that your child has friends. It can be setting up your home with attractive toys and playground equipment so that other children will want to come over and play with your child.
Advocacy on the everyday level can be about not allowing other children to bully your Aspie, even if it means going to PTO meetings and setting up an anti-bullying program at your child’s school. It can be a brother or sister standing up for a sibling with patient explanations when others make fun of him.
Diane Kennedy, mother of two boys with Attention Deficit Disorder and a third son with Asperger Syndrome, found that she had to become an advocate among medical professionals. “What began as a mission to obtain care for my sons,” she writes, “turned into a quest to promote earlier and better diagnosis, treatment and understanding of individuals with autistic spectrum disorders and ADHD.” She ended up doing her own medical research and presenting her conclusions to the medical community about the connection between ADHD and Asperger Syndrome.
Advocacy in Your Child’s School
Parents of children with Asperger Syndrome also find themselves in the role of their child’s advocate in the public school systems. Since special education laws are designed to educate each handicapped child as an individual, parents (as their child’s representative) meet with school staff every year to develop an Individual Education Plan for the child. However, they must work through disability laws, not Asperger Syndrome laws. Parents often know more about the syndrome than school staff; they certainly come to IEP meetings with superior knowledge about their individual child. Yet parents often meet with resistance when they ask for services for their child.
Unless parents have specific knowledge of federal, state and local laws and unless they understand what services are available in their district, they cannot be effective advocates. The school districts officials do not necessarily volunteer such help and information. Usually if parents do not ask for services such as instruction during summer sessions, early childhood intervention, speech therapy, transportation and the like, their child will not receive them. Experts advise parents/advocates to prepare for an IEP meeting by observing classes, exploring programs and options, sharing professional assessments of their child, and having knowledge of laws and services available. It is a good idea to bring spouses and get everything in writing.
This means that, as unfair as it seems, the burden of advocacy is on the parents. A study done in 2000 by the National Council on Disability concluded that:
Federal efforts to enforce the law have been inconsistent, ineffective and lacking real teeth over several administrations. Enforcement is the burden of the parents who too often must invoke formal complaint procedures and due process hearings including expensive and time-consuming litigation to obtain services their children are entitled under the law.
Parents of children with Asperger Syndrome usually get their best help for the IEP process from other parents of children with similar problems. Parents in the same district who have been through the process can explain how the district operates, who key personnel are, and how best to approach staff for services. By banding together, parents can often create their own original solutions such as starting self-contained classrooms that draw children from larger areas.
Advocacy Through Interest Groups
Local chapters of groups such as the Autism Society can provide invaluable help to parents. Some chapters have 24-hour hotlines so you can discuss any problem even as it occurs. Some offer free libraries and/or social programs for families and educational services such as lectures and classes. Some chapters offer unusual options such as sex education classes for children within the autism spectrum.
On a national level, advocacy groups lobby legislatures for more favorable laws for children on the autism spectrum. They operate websites that disseminate information on the latest academic studies, medical breakthroughs and new techniques for helping these children. They raise money for research and public education.
Barbara Kirby and Patricia Bashe are advocates of children with Asperger Syndrome. Not only have they written a guidebook for parents and maintained a comprehensive website called OASIS at http://www.udel.edu/bkirby/asperger/, they also work through the Asperger Coalition for the United States and Homes for Independence. They sum it up as follows: “Advocating for your child means laying the groundwork for understanding and becoming your child’s ambassador to the world.”
“Back to School on Civil Rights,” The National Council on Disability Findings, July 25, 2000.
Bashe, Patricia and Barbara Kirby. The Oasis Guide to Asperger Syndrome. New York: Crown Publishers, 2005.
Interview with Louise Fealk, Tucson Autism Society, March 16, 2007.
Featherstone, Helen. A Difference in the Family: Life With A Disabled Child New York: Penguin Books, 1980.
“Individualized Education Program,” the United States Department of Education, Office of Special Education, posted at http://www.ed.gov/parents/needs/speced/iepguide/index.html
Kennedy, Diane. ADHD Autism Connection. Colorado Springs, CO: Waterbrook Press, 2002.
Klin, Ami; Volkmar, Red; and Sparrow, Sara. Asperger Syndrome. New York: Guilford Press, 2000.
Lovecky, Deirdre. Different Minds. Philadelphia: Kingsley Publishers, 2004.
Powers, Michael. Children with Autism. Bethesda, MD: Woodbine House, 2000.
“The Voice of Autism,” Autism Society of America, see http://www.autism-society.org/site/PageServer