Autism Now

AUTISM NOW
WHEN A CHILD IS DIAGNOSED WITH AUTISM, WHERE SHOULD PARENTS TURN FIRST?
HERE, THE FAMILY GROOVE GETS SOME EXPERT ADVICE ON WHERE PARENTS CAN LOOK
FOR INFORMATION—AND SUPPORT—TO MAKE SURE THEIR CHILD IS GETTING THE BEST
CARE POSSIBLE.

For parents of autistic children, there is no such thing as too
much information. Karen Medeiros of Old Bridge, NJ knows
first hand just how important it is to get the right information
as early as possible. Her son Max, now four-and-a-half, was
diagnosed with autism at 18 months old by a neurologist
after her pediatrician missed the early signs of the disease.

“[The neurologist] said there is not much we can do for these children…and handed me a pamphlet from the New Jersey Center for Outreach and Services for the Autism Community (COSAC),” said Medeiros, who immediately put a call into the local organization. “[They] steered me in the right direction, but I did a lot of research on my own, too.”

According to a recent study released by the Centers for Disease Control and Prevention (CDC), one in 150 children in the US will develop autism or a related disease by age eight. As defined by the CDC, “Autism spectrum disorders (ASDs) are lifelong developmental disabilities. People with ASDs have impairments in social skills and verbal and nonverbal communication. They often have repetitive behaviors or unusual interests. ASDs are part of the broader category of Pervasive Developmental Disorders (PDD) and include Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).”

According to Carol Markowitz, the director of educational services for The Eden Family of Services, a Princeton, N.J.-based nonprofit organization dedicated to the lifespan needs of autistic individuals, the number of diagnosed cases of autism has significantly increased since she started in the field in 1975.

“When I first started we were talking one in 3,000 births … and autism wasn’t really well known,” said Markowitz, who attributes the higher numbers to both awareness of the disease and better diagnostic methods. “There is definitely more and better and earlier diagnoses going on so more kids are being identified than used to be. They refer to it as Autism spectrum disorder, now, and that really refers to the fact that there isn’t really one [diagnosis].”

As the awareness of autism and related disorders has increased, so have the resources available to parents. But, with such an overwhelming amount of information, where does a parent look first?
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“It does somewhat depend on the age of the child, but in general, I would tell parents that there is so much information out there [so] it’s important to go and see things for yourself and get a feeling for what you are the most comfortable with,” said Markowitz.

For example, Markowitz recommends that parents of young autistic children attend a local or national conference. “Conferences give parents the opportunity to network with other parents and to meet service providers,” said Markowitz. “[Both] schools and agencies have booths there [and parents] can pick up a lot of information.”

For Medeiros, a local group for parents of autistic children has offered both information and support. She recommends that parents “get involved in a parent’s group that [includes families with] older kids with autism because they have been through what you are going through. Anyone that has a 12-year-old with autism has been there at age three,” she said.

Here, THE FAMILY GROOVE highlights some of the best web resources for parents to start their own research. Says Medeiros, “Get on the Internet and research as much as you can. There are so many treatments out there and so many things you are entitled to…and don’t take no for an answer.”

Autism Society of America (http://www.autism-society.org/site/PageServer): Founded in 1965, the Autism Society of America (ASA) has 200 chapters nationwide. The site offers parents clear and concise information on the disease as well as an opportunity to meet other parents of autistic children at its national ASA conference. Marking its 38th year, the 2007 conference will be held in Phoenix, Arizona, July 11-14.

Autism Speaks (http://www.autismspeaks.org/index.php): Founded in February 2005 by Suzanne and Bob Wright after their grandson was diagnosed with the disease, Autism Speaks (AS) has quickly become a go-to resource. The site offers a good overview of the disease and links to national and local organizations as well as blogs written by the parents of autistic kids.

AS grew its ranks this year after merging with Cure Autism Now (CAN) (http://www.cureautismnow.org/site/c.bhLOK2PILuF/b.1021889/k.BFD8/Home.htm). Founded by parents of children with autism in 1995, the primary focus of the 20 nationwide chapters of CAN is to fund scientific research of the disease. Additionally, this year marks the first time AS and CAN will join forces for Walk Now, a fundraising event held in 21 cities nationwide.

Centers for Disease Control and Prevention (http://www.cdc.gov/ncbddd/autism/overview.htm): In addition to offering an overview of autism on their site, the CDC has created a network of 17 states to study the prevalence of the disease in the U.S.. Results of their most recent study can be viewed at: http://www.cdc.gov/ncbddd/autism/documents/AutismCommunityReport.pdf

—Jennifer Carofano

After a decade of subways, bagels and window shopping in New York City, Jennifer Carofano now lives with her husband and their two cars in sunny Los Angeles.