The term “autism spectrum disorder” (ASD) covers a broad range of complicated conditions that typically include difficulty with communication and socialization, learning and developmental deficits, and obsession with a narrow range of subjects. Many people with ASDs also have unusual ways of learning, paying attention, and reacting to different sensations. The thinking and learning abilities of people with ASDs can vary—from gifted to severely challenged. 30-50% of people with autism also have seizures. The most effective treatments available today are applied behavioral analysis (ABA) and occupational, speech and physical therapy, which have proven to be the most effective.
Dr. Leo Kanner first described autism in 1943. He reported on eleven children who showed a marked lack of interest in other people, but a highly unusual interest in the inanimate environment. Initially, autism was thought to be an early form of schizophrenia, which led to the belief that its onset could be caused by negative experience or bad parenting. We now know that this is not the case.
Asperger’s Syndrome, named after Hans Asperger, who originally studied and cataloged the symptoms of the syndrome in 1944, used to be considered a separate but related condition, and was recently removed from the Diagnostic and Statistical Manual (DSM-V) and is now diagnosed as a particular range on the autism spectrum.
Autism is four times more likely to affect boys than girls, and is found in all racial, ethnic, and social groups. There is no known single cause for autism, although the best available science points to important genetic components. Through twin studies, scientists have determined that autism is a genetically based condition. If one identical (monozygotic) twin has autism then there is an 80-90% chance that the other twin will also be diagnosed with an autism spectrum disorder. For non-identical (dizygotic) twins the chance is about 3-10% that both twins will develop autism spectrum disorder. The chance that siblings will both be affected by ASD is also about 3-10%.
Scientists are unsure what, if any, environmental triggers may be involved in autism. One theory, popular in the late 1990’s and early 2000’s, that vaccines cause autism, has since been disproven by numerous studies conducted around the world.
National Resources for ASD:
Autism Science Foundation
The Autism Science Foundation provides funding directly to scientists conducting cutting edge autism research to discover the causes of autism and develop better treatments. They also provide information about autism to the general public, and support the needs of individuals with autism and their families.
American Academy of Pediatrics
We are a social education service that encompasses the work of international-award-winner (Aspie, teacher, and Aspie mommy), Jennifer Cook O’Toole, in multiple mediums. Asperkids exists to make life for children with Aspergers more positive and purposeful, and to assist the adults in their lives in the ways they understand, parent, teach and respond to their children.
Asperger’s Syndrome Education Network: A national non-profit organization headquartered in New Jersey that provides education and support to families and individuals affected with Asperger Syndrome, PDD-NOS, High Functioning Autism, and related disorders.
Autism Society of America
7910 Woodmont Ave., Suite 650
Bethesda, MD 20814-3015
(301) 657-0869 (fax)
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
2 Park Avenue
New York, NY 10016
The Daniel Jordan Fiddle Foundation
The Daniel Jordan Fiddle Foundation is a 501 (c)(3) National Autism Organization. The mission of The Daniel Jordan Fiddle Foundation is to develop and award grants to programs that benefit adolescents and adults with Autism Spectrum Disorder.
P.O. Box 1149
Ridgewood, New Jersey 07451-1149
1 (877) 444-1149 (toll free)
(775) 243-9847 (fax)
The International Society for Autism Research (INSAR) is a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders (ASDs), including autism, Apserger syndrome and Pervasive Developmental Disorders Not Otherwise Specified (PDD NOS).
Learning Disabilities Association of America (LDA)
A national network of state-based advocacy groups for families affected by Learning Disabilities. They have been very supportive of issues surrounding some of the learning difficulties common to children with severe social disability, such as those characterized by Non-verbal Learning Disability (NLD).
Executive Director: Ms. Jean Peterson
4156 Library Road
Pittsburgh, PA 15234
(412) 344-0224 (fax)
National Autism Center
The National Autism Center is a new nonprofit organization dedicated to supporting effective, evidence-based treatment approaches and providing direction to families, practitioners, organizations, policy-makers, and funders. The Center is bringing nationally renowned experts together to establish national treatment standards, model best practices, and conduct applied research, serving as a vital source of information, training, and services.
41 Pacella Park Drive
Randolph, Massachusetts 02368
(781) 440-0401 (fax)
OASIS – Online Asperger Syndrome Information and Support
A national online support group and resource for parents, professionals, and individuals with Asperger Syndrome. Includes online support boards, chatrooms, as well as publications, resources, and other comprehensive information.
Contacts: Barbara Kirby and Patricia Romanowski Bashe
The Thinking Person’s Guide to Autism
A source for evidence-based information curated by people with autism, parents of children with autism and autism professionals.
The Child Health Insurance Program (CHIP) is a partnership between state and federal goverments to provide health insurance for children from working families with incomes too high too qualify for Medicaid but to low to afford private coverage.
Health Hippo provides hundreds of links to policy and regulatory information related to health care.
Center for Medicare & Medicaid Services (CMS) is the federal agency which manages Medicare, Medicaid and Child Health Insurance programs. Click on the information clearinghouse section for a list of HCFA publications.
Social Security Administration online answers a lot of questions about benefits, who qualifies for benefits as well as local offices.
Family Voices Publication List “Managed Care for Children with SHCN” is a wonderful brochure explaining managed care as well as what kind of questions to ask about your insurance coverage.
Resources for Parents, Siblings, and Patients
Bandaids and Blackboards (http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/)patients and siblings tell their stories about living with a chronic illness.
Sibling Support Network(https://www.siblingsupport.org/) is a site for the brothers and sisters to check out.
Internet Resources for Special Children (http://orsaminore.dreamhosters.com/handy/links/uk_various.html) has a variety of links for everything from adaptive clothing to traveling with SHCN kids.
MUMS (http://www.mums-network.org/) is a parent networking site linking together parents of special needs kids who share the same or similar diagnosis.