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The Puzzle of AutismBy Dixie Jordan This article first appeared in the November, 2007 print edition of Parents' Press. © 2007 by Parents' Press. All rights reserved.
THREE VIEWS OF AUTISM: Could It Be Autism? by Nancy D. Wiseman (Broadway Books, New York, 2006, $12.95 paperback). Making Sense of Autism by Travis Thompson, Ph.D. (Paul H. Brookes Publishing Co, Baltimore, $29.95 paperback). Louder Than Words: A Mother's Journey in Healing Autism by Jenny McCarthy (Dutton/Penguin Group, New York, 2007, $23.95 hard cover). Autism is a headline grabber, and two questions seem to dominate every discussion: Why has autism increased so dramatically? (Sometimes, "Who's to blame for the increase in autism?") And can it be cured? Three new books and a conversation with Dr. Robert Hendren, director of the M.I.N.D. Institute at the University of California, Davis, a leading autism research center suggest some more immediate questions: · What are the most promising lines of research? · How can we make sure each child with an autism spectrum disorder are diagnosed as early as possible? · What are the most effective, proven interventions for autistic kids? · And, just
possibly, should you get mad if your mother-in-law (mother, babysitter,
fellow play group mom) suggests something may be wrong with your
child? Or should you take a deep breath and consider it? So far, no one knows for sure what causes autism although everything from mercury used to preserve vaccines to a case of "extreme male brain" has been blamed. In fact, there may not be a single cause. Many scientists now believe that autism may result when several risk factors collide. Those factors probably include genetic vulnerability, exposure to a range of toxic substances, and a weakened immune system, Dr. Hendren said. Even some people who blame vaccines for their children's autism are coming to believe there may be multiple causes, he said. Does autism run in families? Maybe. Dr. Hendren said scientists at the M.I.N.D. Institute having been studying women who have an autistic child and become pregnant again. They predicted about 6 percent of those pregnancies would result in a child later diagnosed with an autistic spectrum disorder. Instead, the rate appears to be somewhere between 10 and 15 percent a high rate of recurrence. "But we don't know if that is because of genes, or vulnerable immune systems, or shared toxins in the children's environment," he said. Dr. Hendren is excited about research into the immune system and about what scientists call "translational research" taking basic biological findings and translating those into clinical help for kids. "We're moving in the direction of being able to look at a symptom and say, 'This child has this kind of autism.' Then we can begin to understand which kids respond to which treatment," he said. "And I think we are making great progress faster progress in understanding autism than in ADHD and childhood bipolar disorder, for example." Early Intervention With early diagnosis and intervention, many autistic children can learn to communicate, Dr. Hendren emphasized. " Austistic children often don't even look at other people," he said. "They don't understand communication. They don't know others are trying to communicate with them. "If they haven't acquired language by age 5, it's very difficult from then on. And the things they didn't experience in their early years are gone forever." Nancy D. Wiseman, the mother of an autistic daughter and the winner of an layman's award from the American Academy of Pediatrics, tackles the question of early detection head-on in Could It Be Autism? Don't ignore your
misgivings, she urges parents, and don't "wait and see."
If your pediatrician doesn't take your concerns seriously, insist
on a formal screening for autism and other developmental delays. Like many parents who write about autism, Wiseman doesn't pass judgment on the huge range of largely unproved treatments that are available. For a serious look what does work, what may work, and what has little or no evidence to back up its claims, turn to Making Sense of Autism by Travis Thompson, Ph.D., a psychologist and a professor at the University of Minnesota School of Medicine. This is a book for anyone who likes their information straight up and supported by facts. For example, Thompson ranks early intervention programs by whether there is real data to prove their effectiveness, and he doesn't hesitate to give low scores to some very popular systems. The only ones to receive his top score are The Picture Exchange System, or PECS, for children without verbal language, and three programs based on the principles of applied behavior analysis, or ABA. One of the top-ranked ABA programs is based at UCLA, where researcher Ivar Lovass began studying autistic children in the 1980s. His intensive behavioral treatment regimen 40 hours per week of one-on-one contact for two to three years emphasized language development and social skills. He continues to follow those children today. According to Thompson, eight of the 19 children in Lovass' original group are now functioning relatively normally as young adults. A comparison group enrolled in a 10-hour-per-week group program did not show similar gains. "ABA programs
are increasingly available, even in some public schools,"
Dr. Hendren said. In Making Sense of Autism, Thompson also gives the reader lots of information on how early behavioral invention works, on other conditions that may coexist with autistic spectrum disorders, and on drugs commonly used to treat autistic children. In many ways, this is a hopeful book, for Thompson believes early invention can reduce or even eliminate many of the behavior problems that are hardest for parents to deal with. Making Sense of Autism is written for non-experts, and every bit of technical language is carefully explained, but it's not the world's easiest read. Concerned parents who are comfortable with fairly complex material should find it very useful. Jenny McCarthy, former
MTV celebrity and the mother of an autistic son, Evan, hit the
talk-show circuit in late 2007 to promote her new book, Louder
Than Words. It's a soul-baring look at a mother in denial. Fortunately McCarthy eventually enrolled her son in the UCLA program. Not quite so fortunately, she gives equal credit for his progress to some treatments with shaky underpinnings. But if Louder Than Words provides a wake-up call for even one parent who is ignoring warning signs, it will be valuable.
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WHERE TO FIND FREE HELP
(Regional Centers, Family Support Centers, & Public School Districts)
Regional Centers
California provides a wide range of early invention services for developmentally disabled children, including those with autistic spectrum disorders, under a program called Early Start. Services are available from birth to the third birthday, when a child's local school district takes over.
The program is administered through private non-profit corporations called "regional centers." Most services are free, regardless of parents' income. A few such as 24-hour out-of-home placements require a co-payment from parents. The following regional centers serve families in the Bay Area and nearby:
· Alta California Regional Center, Sacramento, (916) 978-6400. Serves Sacramento and Yolo counties, among others.
· Golden Gate Regional Center, San Francisco, (415) 546-9222. Serves Marin, San Francisco, and San Mateo counties.
· North Bay Regional Center, Napa, (707) 256-1100. Serves Napa, Solano, and Sonoma counties.
· Regional Center of the East Bay, Oakland, (510) 383-1354. Serves Alameda and Contra Costa counties.
· San Andreas Regional Center,, Campbell, (408) 374-9960. Serves Monterey, San Benito, Santa Clara, and Santa Cruz counties.
· Valley Mountain Regional Center, Stockton, (209) 473-0951. Serves San Joaquin, Stanislaus, and Tuolumne counties.
· Valley Mountain Regional Center, Stockton, (209) 473-0951. Serves San Joaquin and Stanislaus counties, among others.
If you need additional information about how to get Early Start services, call (800) 515-BABY or e-mail earlystart@dds.ca.gov.
Early Start Family Resource Centers
FRCs are staffed by parents who have children with special needs. They provide parent-to-parent support for families with infants or toddlers and information about early intervention services and how to navigate the Early Start system. The following FRCs serve the Bay Area and nearby areas.
· CARE Parent Network, Martinez, (925) 313-0999, www.CareParentNetwork.org Serves Contra Costa County.
· Family Resource Center at Community Gatepath (MORE), Burlingame, (650) 295-0189. Serves San Mateo County.
· Family Resource Network, Oakland, (510) 547-7322, www.frnoakland.org. Serves Alameda County.
· Matrix Parent Network, Novato, (800) 578-2592, www.matrixparents.org. Serves Marin and Sonoma counties.
· Matrix Parent Network, Vallejo, (800) 578-2592, www.matrixparents.org. Serves Napa and Solano Counties.
· Support for Families of Children with Disabilities, San Francisco, (415) 282-7494, www.supportforfamilies.org. Serves San Francisco.
· Warmline FRC, Sacramento, (916) 922-9276, www.warmlinefrc.org. Serves Sacramento and Yolo counties, among others.
· Parents Helping Parents, Inc., Santa Clara, (408) 727-5775, www.php.com Serves Santa Clara Co.
For a complete list of FRCs in California, visit www.frcnca.org/directory.html.
Public School Districts
In California, public school districts provide free, individualized, and "appropriate" services for special needs children, including those with autistic spectrum disorders, beginning at age 3. Programs vary, but often include specialized part-day preschool, speech therapy, and other services.
Large districts usually have their own programs. Smaller ones band together in a group called a SEPTA, or Special Education Local Plan Area, to offer a wider range of services than each could provide individually.
To begin the process, contact your local school district's special education office. The district will perform an assessment to determine if your child is eligible for services.
It's often helpful to call a few months before your child's third birthday, so that the assessment is complete and services can begin as soon as your child turns 3.
Some school districts offer detailed information on their websites.