Friends and family of kids with Aspergers and High-Functioning Autism often feel as if they are in the position that Helen Featherstone describes in her book, A Difference in the Family: Life with a Disabled Child. They are involved with kids who cannot fend for themselves: kids who need advocates to stand up for them. A youngster's call for help means that they can no longer be "ordinary people" without a choice to make. If they 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 youngster 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 Aspergers, a disorder most people have never heard of. It is explaining the same things over and over every time a new person enters the youngster'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. Aspergers 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 playgroup at your house so that your youngster has friends. It can be setting up your home with attractive toys and playground equipment so that other kids will want to come over and play with your youngster.
Advocacy on the everyday level can be about not allowing other kids to bully your child, even if it means going to PTO meetings and setting up an anti-bullying program at your youngster'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 Aspergers, 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 Aspergers.
Advocacy in Your Youngster's School—
Moms & dads of kids with Aspergers also find themselves in the role of their youngster's advocate in the public school systems. Since special education laws are designed to educate each handicapped youngster as an individual, moms & dads (as their youngster's representative) meet with school staff every year to develop an Individual Education Plan for the youngster. However, they must work through disability laws, not Aspergers laws. Moms & dads often know more about the syndrome than school staff; they certainly come to IEP meetings with superior knowledge about their individual youngster. Yet moms & dads often meet with resistance when they ask for services for their youngster.
Unless moms & dads 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 moms & dads do not ask for services such as instruction during summer sessions, early childhood intervention, speech therapy, transportation and the like, their youngster will not receive them. Experts advise moms & dads/advocates to prepare for an IEP meeting by observing classes, exploring programs and options, sharing professional assessments of their youngster, 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 moms & dads. 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 moms & dads who too often must invoke formal complaint procedures and due process hearings including expensive and time-consuming litigation to obtain services their kids are entitled under the law.
Moms & dads of kids with Aspergers usually get their best help for the IEP process from other moms & dads of kids with similar problems. Moms & dads 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, moms & dads can often create their own original solutions such as starting self-contained classrooms that draw kids from larger areas.
Advocacy Through Interest Groups—
Local chapters of groups such as the Autism Society can provide invaluable help to moms & dads. 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 kids within the autism spectrum.
On a national level, advocacy groups lobby legislatures for more favorable laws for kids under the autism spectrum. They operate websites that disseminate information on the latest academic studies, medical breakthroughs and new techniques for helping these kids. They raise money for research and public education.
Barbara Kirby and Patricia Bashe are advocates of kids with Aspergers. Not only have they written a guidebook for moms & dads 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 youngster means laying the groundwork for understanding and becoming your youngster's ambassador to the world."
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome