Autism Genetic Resource Exchange
The Autism Genetic Resource Exchange (AGRE) is a repository (gene bank) of genetic and clinical information that is made available to autism researchers worldwide.
More information for families | More information for researchers
Autism Treatment Network
The Autism Treatment Network (ATN) was established in 2005 as the nation's first network of hospitals and physicians aiming to bridge gaps in knowledge and understanding and to improve treatment for individuals with autism.
Autism Tissue Program
The Autism Tissue Program (ATP), established in 1998, is a parent-led post-mortem brain tissue donation program dedicated to autism research.
Clinical Trials Network
The Clinical Trials Network (CTN) launched in 2005 to focus on translational research, the critical step necessary to transfer findings from the laboratory to clinical application.
Interactive Autism Network
Interactive Autism Network (IAN) is an innovative online project designed to accelerate the pace of autism research by linking researchers and families.
Internet System for Assessing Autistic Children
ISAAC (Internet System for Assessing Autistic Children) is a web-based application for administering and managing health research projects/studies and the associated data. ISAAC's easy-to-use layout allows study personnel a fast, easy, and secure method for entering and validating (double data entry) study information, and exporting to your favorite database application or analysis tool.
More information for researchers
Parents as Partners
Parents as Partners is designed to connect families interested in participating in research studies with researchers who are actively recruiting participants.
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Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.
In February 2007, the Centers for Disease Control and Prevention issued their ADDME autism prevalence report. The report, which looked at a sample of eight-year -olds in 2000 and 2002, concluded that the prevalence of autism had risen to 1 in every 150 American children, and almost 1 in 94 boys. The issuance of this report caused a media uproar, but the news was not a surprise to ASA or to the 1.5 million Americans living with the effects of autism spectrum disorder. Nonetheless, the resulting spotlight on autism opens opportunities for the nation to consider how to serve these families facing a lifetime of supports for their children.
Currently, ASA estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, and that the United States is facing almost $90 billion annually in costs for autism (this figure includes research, insurance costs, and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, in addition to related therapeutic services and caregiver costs).
Autism is treatable. Children do not "outgrow" autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes.
Here are some signs to look for in the children in your life:
There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms being exhibited. At first glance, some persons with autism may appear to have mental retardation, a behavior disorder, problems with hearing, or even odd and eccentric behavior. To complicate matters further, these conditions can co-occur with autism. However, it is important to distinguish autism from other conditions, since an accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program.
A brief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. Parental (and other caregivers' and/or teachers’) input and developmental history are important components of making an accurate diagnosis.
What Causes Autism
There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in children with autism versus neuro-typical children. Researchers are investigating a number of theories, including the link between heredity, genetics, and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.
Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development, resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors, such as viral infections, metabolic imbalances, and exposure to environmental chemicals.
Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism. Read more about related conditions.
Research indicates that other factors besides the genetic component are contributing to the rise in increasing occurrences of ASD, such as environmental toxins (e.g., heavy metals, such as mercury), which are more prevalent in our current environment than in the past. Those with ASD (or those who are at risk) may be especially vulnerable, as their ability to metabolize and detoxify these exposures can be compromised. Read more about environmental health and autism.