Newsletter
Volume 28 | 2005 | Number 1
The Autism Education Network Empowers Those Affected by Autism
When Michele Waterman walks through the doors of the San Jose Marriott on April 14th, she will pass a significant milestone of the Autism Education Network (AEN), the parent-run nonprofit advocacy group she founded only 22 months ago. AEN, in collaboration with the University of California Davis’s MIND Institute, will hold its first annual “Best Practices in Autism Treatment and Methodologies” education conference, April 14-16, 2005.
The conference is geared toward public school special education teachers, occupational therapists, speech and language pathologists, behavioral therapists, and parents, as well as graduate students pursuing the field of educating students affected by autism. Participants of the conference will attend workshops and presentations and learn from world-renown autism experts including: James Partington, Ph.D., BCBA; Carol Gray, Steven Gutstein, Ph.D.; Bridget Taylor, Ph.D., BCBA; Pamela Wolfberg, Ph.D.; Emily Rubin, MS, CCC-SLP; and Amy Coggeshall Laurent, OTR/L. Each day will start with a brief keynote address including presentations by Dr. Robert Hendren, Executive Director of the UC Davis MIND Institute, Ethan Long, Ph.D., BCBA and Executive Director of The Bay School, and Eustatia Cutler, author of A Thorn in My Pocket and mother of Temple Grandin.
Until There’s a Cure, Education is the Best Hope
Ten years ago, autism was diagnosed in one out of 10,000 children and considered a rare disorder. Today, autism is diagnosed in one out of 166 children. There are 1.5 million people diagnosed with autism living in the United States today, 450,000 of whom are children needing individualized special education programs.
Waterman, the mother of a child with autism, founded AEN on the belief that “until we find a cure, education is the best hope for children affected by autism and related disorders.” Today, AEN uses the power and accessibility of the Internet to improve special education programs and to influence public policy that affects individuals with autism.
After launching its website in April 2004 (www.autismeducation.net), AEN has created an electronic community of more than 650 parents and professionals dedicated to affecting change. The website contains a wide range of free information available in various formats including content about treatment for autism, understanding special education law and helpful hints about negotiating appropriate individual education programs. The website offers access to AEN’s electronic community, or e-community, which is an online resource center that includes web-based tools like a legislative advocacy center and a parent support directory.
The website tools and services are available for free to anyone with high-speed Internet access. By being part of this online community, members can use a collective voice to get their opinions heard, join volunteer committees addressing current issues, and share stories of their struggles and accomplishments.
“We will use technology to unite the autism community. Our intent is to leverage the power of our common interests and goals in order to improve public special education programs and to make sure our children benefit from their civil right to a free appropriate public education. We aspire to empower every family that cares for a child with autism to voice their opinions about special education and public policy that affects their child.” Waterman explains. “If you’re a parent of a child with autism, you basically have to be a doctor, an attorney, and an educator, and these days, you have to be a politician too. No parent or family should have to walk this road alone and now they don’t have to. By using Internet innovation, we can reach and serve more people and help improve the lives of more children affected by autism.”
AEN recently put the potential of its electronic community to work. In August, AEN developed and distributed an e-mail action alert to its members in California. Using its online legislative center, the organization helped gain Gov. Arnold Schwarzenegger’s support to sign AB2943, a bill that bans mercury in all infant and childhood vaccines by January 2006. Mercury, a known neurotoxin, is suspected in playing a role in affecting autism in genetically susceptible babies and toddlers. Gov. Schwarzenegger signed the bill, which took effect in January 2005.
Another one of AEN’s crowning achievements
is its growing FAIR Scholarship Program. The
program is AEN’s response to the delta
between the intention and the reality of the
Individuals with Disabilities Education Act
(IDEA). “In the real world,” says
Michele, “IDEA does not ensure a FAPE,
or a free, appropriate public education. The
reality is that unless a family has money, connections
in the community, or superior health insurance,
their child may not get a FAPE.”
The FAIR scholarships help families get free
access to information and resources necessary
to secure appropriate education services, including
services for families who do not speak English
as their first language.
A Personal Journey Becomes an Impassioned Mission
Michele wasn’t always a self-taught autism expert and advocate. Before giving birth to her son in 2000, she was a top sales executive for a communication technology company in California, and co-owner of a firm that distributes power and electrical products
At age two, her son, John, was diagnosed with apraxia, a neurological speech disorder. Months later, he was officially diagnosed with autism.
“I was researching apraxia and realized that it generally occurs with Downs Syndrome, cerebral palsy, or autism,” says Michele. “When I saw the word ‘autism,’ I just knew.”
John began special preschool under the California Early Start Program, which provided individualized services he needed. The program in Michele’s county is run by the San Andreas Regional Center, which reports to the California Department of Developmental Services. Michele says she was relentless in making sure her regional center wrote specific objectives like a behavioral and sensory integration assessment into her son’s family service plan. “Most parents don’t realize that their child is entitled to a multi-disciplinary assessment based on the child’s suspected disability. In the case of autism, this may include assessments from a speech and language pathologist, an occupational therapist, and a behavioral analyst.” John’s program included 20 hours of weekly one-on-one applied behavioral analysis (ABA) at home, a parent-participation preschool class two days per week, two hours per day, and the implementation of an in-home occupational therapy program and sensory diet facilitated by John’s team of teachers. In addition, Michele and her husband paid for one-on-one occupational therapy and speech therapy through their health insurance.
But at age three, John became part of the Cambrian School District. By law, school districts must provide a child with special needs an education that is appropriate for that child. But the individualized plan designed by the district offered less than what her son was already receiving. During a year-long due process hearing with the school district, the Watermans spent $85,000 of their own money to give their son private therapy. Through this daily therapy, John showed encouraging improvement. He learned how to speak and string words into sentences. He also leaned how to point and gesture for help, a significant accomplishment.
He now receives 20 hours of in-home ABA programming to work on play and social skills through play dates and community outings. He participates in a special day class four days per week at a public school near their home. He also receives one-on-one occupational therapy and speech therapy provided by the school district as well as additional sessions paid privately by the family.
Today, as Michele’s son approaches age five, she can confidently say John is functioning much better. He has about 500 words and uses four to ten-word sentences. He plays more appropriately, has fewer tantrums, and exhibits far less self-harmful behavior. Michele credits John’s improvements to the intensive and specialized education services that John receives.
“We have an amazing team of service providers, and we have created an integrated home program that covers all of John’s developmental needs,” Michele says. “I am a firm believer of a multi-disciplinary approach including applied behavior analysis, but the provider of these highly specialized and intensive one-on-one services must be carefully scrutinized by parents. All providers are not equal.”
Now Michele is addressing biomedical approaches like dietary modification and nutritional supplementation to address medical issues that contribute to various symptoms associated with autism. Problems with his gut, his immune system, and his body’s inability to absorb nutrients from the foods he eats all contribute to how his nervous system functions. The results of medical testing prove that environmental neuro-toxins plague John’s health and likely affect how his brain functions. Michele’s hope is that aggressive biomedical treatment coupled with best practices in autism education will produce the maximum benefits for John, which means a happier and healthier little boy.
By creating the Autism Education Network, Michele hopes to provide the resources, guidance , and support other parents need to navigate the special education system.
“I am passionate about early and effective educational interventions and making sure that public agencies are accountable regardless of the budget crisis. It is also important that parents and educators understand the implications of health issues that can impact brain functioning. In retrospect, I would have pursued the biomedical interventions we are doing now two years ago in conjunction to the intensive and specialized education services.”
The best of these education methodologies will be presented by keynote speakers and in a wide variety of workshops at AEN’s upcoming “Best Practices in Autism Treatment and Methodologies” education conference. Workshop topics will range from incorporating sensory needs and behavior management in the classroom to improving communication, play and social skills. And keeping true to the organization’s name, there will also be the opportunity to network with hundreds of other autism professionals and parents.
For more information on the Autism Education Network’s “Best Practices in Autism Treatment and Methodologies” education conference, April 14-16, 2005, visit www.autismeducation.net and click on “Events.”
This section of the newsletter introduces ABA’s new organizational members. Each new member has prepared a description of its work and services so that it can introduce itself to the larger ABA community. The inclusion of this material is not an endorsement, authorization, sponsorship or affiliation by ABA of these members or their work and services or of the content of the material they present.