Living with AutismBy Marianne Toedtman, RN, MN
Autism Speaks Assistant National Director of Outreach and Resources
Autism Speaks offers resources, tool kits and support to help manage the day-to-day challenges
Autism Speaks’ mission is to change the future for all who struggle with autism spectrum disorders. Chief Scientific Officer Geri Dawson tells us that there is still a lot that we do not know, and there is more that we need to do. Most people agree – without further research, a complete understanding of this complex disorder is not possible. And, the more we understand, the better we are able to develop approaches that address the myriad challenges associated with the disorder.
While we work to change the future, we are also committed to addressing the daily struggles people with autism, their families and caregivers face today. Autism Speaks’ Family Services team is proud that half of its members are parents of children with autism. Team member Colleen Dolnick says, “It gives us a huge advantage when we talk with the hundreds of families who call us each month because they do not know where to turn for help. Parents immediately feel a sense of comfort, knowing you may have gone through a similar experience.”
Living with autism is often accompanied by a profound sense of isolation and helplessness, for the affected individual as well as the immediate family. Dolnick continues, “It is important that families can connect with us, quickly get the information they need, and recognize the power of their own advocacy.”
The team supports families by connecting them to resources and information, enabling them to make informed decisions. Information is a powerful tool; it can lead to dramatic improvement in the outcome and quality of life of an individual with autism. The Family Services team is providing a vital link for those who are living with autism today.
Resources For All Ages
The Autism Speaks online Resource Guide is one of the largest databases of autism resources in the country with more than 25,000 entries and information from all over the United States. Searchable by state or by zip code, resources are organized in over 35 categories. A Resource Library offers an online library that provides a variety of autism information and reference materials including books, blogs, catalogs and tool kits, as well as resources for Spanish-speaking families.
Age-related resources are organized into three categories in the family services section of the Autism Speaks website: Diagnosis/Intervention (0-3), School Age/Youth (3-22) and Young Adult/Adult (22 years and older). A family can quickly get to the information that is relevant to their loved one. Parents are busy people, short on time and want to put their finger on information that typically has to do with an individual’s age. Visit www.autismspeaks.org/community/familyservices to learn more. As a service to the community, all resources are free.
Autism Speaks provides critical information to families who might otherwise not have access to information. Families have the opportunity to contact Autism Response Team (ART) coordinators, who are specially trained parents of children with autism who talk and email hundreds of families each month. An ART coordinator can be contacted through a toll-free number, 888-AUTISM2 (288-4762), or by email at firstname.lastname@example.org.
• Autism is a complex neurobiological
disorder that impacts communication, behavior and social relationships
• 1 in an estimated 100 children is diagnosed with autism
• More children will be diagnosed with autism this year than with AIDS, pediatric cancer and diabetes combined
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs the nation over $35 billion per year, a figure expected to increase significantly in the next decade
• Boys are four times more likely than girls to have autism
• There is no medical detection or cure for autism.
What Causes Autism?
• Scientists don’t know exactly what causes autism.
• Much evidence supports the idea that genetic factors – that is genes, their function, and their interactions – are one of the main underlying causes of ASD. But researchers are not looking for just one gene. Current evidence suggests that as many as 10 or more genes on different chromosomes may be involved in autism to different degrees.
• Some genes may place a person at greater risk for autism, called susceptibility. Other genes may cause specific symptoms or determine their severity. Another possibility is that genes with changes or mutations might add to the symptoms of autism because the genes or gene products aren’t working properly.
• Research has also shown that environmental factors, such as viruses, may also play a role in causing autism.
• While some researchers are examining the relationship between genes and environmental factors, other researchers are looking at possible neurological, infectious, metabolic and immunologic factors that may be involved in autism.
• Because the disorder is so complex, and because no two people with autism are exactly alike, autism is probably the result of many causes. É
Source: National Institute of Child Health and Human Development, NIH, DHHS. (2005). Autism Overview: What We Know (05-5592).
Marianne Toedtman, a Clinical Nurse Specialist, is the Assistant National Director of Outreach and Resources for Autism Speaks. She is the mother of a 17-year-old son, Hunter, who has autism.
Marianne Toedtman R.N., M.N.
5455 Wilshire Blvd.
Los Angeles, CA 90036-4234
888 AUTISM2 (288-4762)