Autism Spectrum Disorder
What Is Autism Spectrum Disorder?
Autism spectrum disorder (ASD) is characterized by:
- Persistent deficits in social communication and social interaction across multiple contexts;
- Restricted, repetitive patterns of behavior, interests, or activities;
- Symptoms must be present in the early developmental period (typically recognized in the first two years of life); and,
- Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment or disability that children with ASD can have. Some children are mildly impaired by their symptoms, while others are severely disabled. The latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) no longer includes Asperger’s syndrome; the characteristics of Asperger’s syndrome are included within the broader category of ASD.
Who Is At Risk?
Studies measuring autism spectrum disorder (ASD) prevalence—the number of children affected by ASD over a given time period—have reported varying results, depending on when and where the studies were conducted and how the studies defined ASD.
A survey by the Centers for Disease Control and Prevention (CDC) of health and school records of 8-year-olds in 11 communities throughout the country found that in 2010, the rate of ASD was higher than in past U.S. studies, around 1 in 68 children. Boys face about four to five times higher risk than girls.
Experts disagree about whether this shows a true increase in ASD prevalence. Since the earlier studies were completed, guidelines for diagnosis have changed. Also, many more parents and doctors now know about ASD, so parents are more likely to take their children to be diagnosed, and more doctors are able to properly diagnose ASD. These and other changes may help explain some differences in prevalence numbers. Even so, the CDC report confirms other recent studies showing that more children are being diagnosed with ASD than ever before. For more information, please visit the autism section of the CDC website .
After your child is diagnosed with autism spectrum disorder (ASD), you may feel unprepared or unable to provide your child with the necessary care and education. Know that there are many treatment options, social services and programs, and other resources that can help.
Some tips that can help you and your child are:
- Keep a record of conversations, meetings with health care providers and teachers, and other sources of information. This will help you remember the different treatment options and decide which would help your child most.
- Keep a record of the doctors' reports and your child's evaluation. This information may help your child qualify for special programs.
- Contact your local health department or autism advocacy groups to learn about the special programs available in your state and local community.
- Talk with your child's pediatrician, school system, or an autism support group to find an autism expert in your area who can help you develop an intervention plan and find other local resources.
Understanding teens with ASD
The teen years can be a time of stress and confusion for any growing child, including teenagers with autism spectrum disorder (ASD).
During the teenage years, adolescents become more aware of other people and their relationships with them. While most teenagers are concerned with acne, popularity, grades, and dates, teens with ASD may become painfully aware that they are different from their peers. For some, this awareness may encourage them to learn new behaviors and try to improve their social skills. For others, hurt feelings and problems connecting with others may lead to depression, anxiety, or other mental disorders. One way that some teens with ASD may express the tension and confusion that can occur during adolescence is through increased autistic or aggressive behavior. Teens with ASD will also need support to help them understand the physical changes and sexual maturation they experience during adolescence.
If your teen seems to have trouble coping, talk with his or her doctor about possible co-occurring mental disorders and what you can do. Behavioral therapies and medications often help.
Preparing for your child's transition to adulthood
The public schools' responsibility for providing services ends when a child with ASD reaches the age of 22. At that time, some families may struggle to find jobs to match their adult child's needs. If your family cannot continue caring for an adult child at home, you may need to look for other living arrangements. For more information, see the section, "Living arrangements for adults with ASD."
Long before your child finishes school, you should search for the best programs and facilities for young adults with ASD. If you know other parents of adults with ASD, ask them about the services available in your community. Local support and advocacy groups may be able to help you find programs and services that your child is eligible to receive as an adult.
Another important part of this transition is teaching youth with ASD to self-advocate. This means that they start to take on more responsibility for their education, employment, health care, and living arrangements. Adults with ASD or other disabilities must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education, in the community, and elsewhere.
Living arrangements for adults with ASD
There are many options for adults living with ASD. Helping your adult child choose the right one will largely depend on what is available in your state and local community, as well as your child's skills and symptoms. Below are some examples of living arrangements you may want to consider:
- Independent living. Some adults with ASD are able to live on their own. Others can live in their own home or apartment if they get help dealing with major issues, such as managing personal finances, obtaining necessary health care, and interacting with government or social service agencies. Family members, professional agencies, or other types of providers can offer this assistance.
- Living at home. Government funds are available for families who choose to have their adult child with ASD live at home. These programs include Supplemental Security Income, Social Security Disability Insurance, and Medicaid waivers. Information about these programs and others is available from the Social Security Administration (SSA). Make an appointment with your local SSA office to find out which programs would be right for your adult child.
- Other home alternatives. Some families open their homes to provide long-term care to adults with disabilities who are not related to them. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.
- Supervised group living. People with disabilities often live in group homes or apartments staffed by professionals who help with basic needs. These needs often include meal preparation, housekeeping, and personal care. People who are more independent may be able to live in a home or apartment where staff only visit a few times a week. Such residents generally prepare their own meals, go to work, and conduct other daily activities on their own.
- Long-term care facilities. This alternative is available for those with ASD who need intensive, constant supervision.
Many recent research studies have focused on finding the earliest signs of autism spectrum disorder (ASD). These studies aim to help doctors diagnose children at a younger age so they can get needed interventions as quickly as possible.
For example, one early sign of ASD may be increased head size or rapid head growth. Brain imaging studies have shown that abnormal brain development beginning in an infant's first months may have a role in ASD. This theory suggests that genetic defects in growth factors, which direct proper brain development, cause the brain abnormalities seen in autism. It's possible that an infant's sudden, rapid head growth may be an early warning signal, which could help in early diagnosis and treatment or possible prevention of ASD. Current studies on ASD treatment are exploring many approaches, such as:
- A computer-based training program designed to teach children with ASD how to create and respond to facial expressions appropriately
- A medication that may help improve functioning in children with Fragile X syndrome
- New social interventions that can be used in the classroom or other "everyday" settings
- An intervention parents can follow to reduce and prevent ASD-related disability in children at high risk for the disorder.
More information about clinical trials on ASD funded by the National Institute of Mental Health is available on the website.
You can read about future research plans on the Interagency Autism Coordinating Committee's (IACC's) website . The IACC is made up of representatives of Federal agencies and members of the public and coordinates efforts within the U.S. Department of Health and Human Services concerning ASD.
NIMH supports research studies on mental health and disorders. See also: A Participant's Guide to Mental Health Clinical Research.
Participate, refer a patient or learn about results of studies in ClinicalTrials.gov , the NIH/National Library of Medicine's registry of federally and privately funded clinical trials for all disease.
Find NIH-funded studies currently recruiting participants with ASD .