Autism Spectrum Disorder is a neurodevelopmental disorder that affects each individual differently and to varying degrees. ASD primarily impacts an individual’s ability to communicate and engage in social interactions,  maintain and understand relationships and regulate sensory input. People with ASD also have repetitive behaviors and/or restricted interests.

Signs of ASD almost always begin before a child is 3 years old. Often, parents notice a delay in learning to talk, or no talking at all. Other behaviors observed include little to no eye contact with other people, a preference to play alone, repeated body behaviors, attachment to objects, or getting upset when a routine changes. If you have concerns about your child, contact your child’s doctor, and if appropriate, ask for a referral.

ASD is diagnosed through observation of an individual’s behaviors and by collecting information on developmental, medical, and psychiatric history of the family. Specialists who can provide a diagnostic evaluation include Developmental Pediatricians, Child Neurologists, Child Psychologists, and Child Psychiatrists. These specialists will evaluate an individual's behaviors in two main areas:

Communication and social interactions. For example, a child may have trouble making eye contact or won't share interests with people around them. People with ASDs also may have a hard time understanding someone else's feelings, such as pain or sadness.

Repetitive and restrictive pattern of behavior. This could included repetitive body movements, limited interests in activities or play, focusing on parts of toys rather than playing with the whole toy. Older children and adults may be fascinated by very specific topics, like cars.

Most clinicians wait until a child is 18 - 24 months before providing a diagnosis. It is important for children who receive diagnoses when they are very young to be re-evaluated each year, including observation of changes in cognitive and language skills.

Despite enormous efforts around the globe, at this time nobody knows what causes ASD. There may be many different factors that make a child more likely to have ASD, including environmental, biological, and genetic factors. ASD tends to run in families, so experts think it may be something that is passed down in families. Scientists are trying to find out exactly which genes may be responsible for ASD. Other studies are looking at whether ASD can be caused by other medical problems or by something in the environment.

The Centers for Disease Control estimate that about 1 in 88 children are identified with an ASD. ASD occurs in all racial, ethnic, and socioeconomic groups, and are almost five times more common among boys than girls. ASD is the fastest growing diagnosis in the California Special Education system. In 2009 alone, the number of students affected by autism in six Bay Area counties increased by 707, approximately 4 new students added every day of the regular academic year. There has been some research about the possibility that ASD is just being noticed more and diagnosed more than in the past, and although this is true, it still doesn't seem to explain all of the increase we are seeing.  This highlights the need for more research into the risk factors and causes of ASD to slow the increase not only in CA but across the country.

There are a number of excellent web sites whose goal is to provide information about ASD and/or a guide to resources and programs for individuals and families affected by ASDs.

1. Centers for Disease Control
2. Autism Speaks
3. National Institutes of Mental Health

An ASD research study is a project designed and conducted by trained researchers to gain more knowledge about or to answer a specific question about ASD. All research studies must be approved by an Institutional Review Board (IRB), which is a committee formed to monitor, review, and approve all studies involving humans or data about humans. The primary goal of the IRB is to protect the rights of human participants, to make sure that the study is safe for volunteers and to make sure that volunteers are fully informed about the research study.

Participating in research can be a very valuable experience for individuals and families.
People participate in research for different reasons. By providing information about you
or your child’s experience with an ASD you can help researchers, educators, and policy
makers better understand this group of disorders. Others participate because they hope
to gain access to the most advanced treatments available. Research studies cannot
happen without volunteers, so researchers rely on participants to help further our
understanding of ASD.

There are many benefits to volunteering for a study. Most people get involved because they want to help advance knowledge of ASD. Some people volunteer because it allows them access to new potential treatments for their condition. The results from your participation may help the development of new diagnostic methods or new treatments, and may be published for others to read and learn from.

The procedures of a research study depend on the study being conducted. Some studies may involve answering questions and some may involve doing things. You may be asked to participate just once or you may be asked to participate multiple times of a period of time.

Each research study will have its own set of risks, and sometimes there are no risks. You will always be told if there are any potential risks and all studies are carefully reviewed by an Institutional Review Board to make sure that volunteers undergo the minimum risk possible. Sometimes there are unknown risks from a procedure or a medication. It is important to discuss the risks and ask questions from the researcher before enrolling in the study.

There are many opportunities in the Bay Area for you or your family to participate in autism research. Please visit our Research Opportunities page for a list of the current studies that may be of interest.

Autism Speaks also provides information on other national and regional projects on their website: http://www.autismspeaks.org/science/participate-in-research

Remember that you are the most important part of the research process and researchers need you!

If you have concerns about yourself or a family member showing signs of an autism spectrum disorder, it is best to discuss this with your primary care physician (PCP) first. Many insurance providers have certain steps you need to follow in order to determine eligibility and coverages for evaluations. Your physician's office can assist you. 

Although the Bay Area Autism Consortium does not endorse or recommend any specific providers, therapies, medications, or philosophies that families may encounter from the resources listed below, the following institutions currently provide comprehensive assessments for children and/or adults.

South Bay/Penninsula