Autism

Topic Overview

What is autism?

Autism is a brain disorder that often makes it hard to communicate with and relate to others. With autism, the different areas of the brain fail to work together.

Most people with autism will always have some trouble relating to others. But early diagnosis and treatment have helped more and more people with autism to reach their full potential.

What causes autism?

Autism tends to run in families, so experts think it may be something that you inherit. Scientists are trying to find out exactly which genes may be responsible for passing down autism in families.

Other studies are looking at whether autism can be caused by other medical problems or by something in your child’s surroundings.

Some people think that childhood vaccines cause autism, especially the measles-mumps-rubella, or MMR, vaccine. But studies have not shown this to be true. It’s important to make sure that your child gets all childhood vaccines. They help keep your child from getting serious diseases that can cause harm or even death.

What are the symptoms?

Symptoms almost always start before a child is 3 years old. Usually, parents first notice that their toddler has not started talking yet and is not acting like other children the same age. But it is not unusual for a child to start to talk at the same time as other children the same age, then lose his or her language skills.

Symptoms of autism include:

  • A delay in learning to talk, or not talking at all. A child may seem to be deaf, even though hearing tests are normal.
  • Repeated and overused types of behavior, interests, and play. Examples include repeated body rocking, unusual attachments to objects, and getting very upset when routines change.

There is no "typical" person with autism. People can have many different kinds of behaviors, from mild to severe. Parents often say that their child with autism prefers to play alone and does not make eye contact with other people.

Autism may also include other problems:

  • Many children have below-normal intelligence.
  • Teenagers often become depressed and have a lot of anxiety, especially if they have average or above-average intelligence.
  • Some children get a seizure disorder such as epilepsy by their teen years.

How is autism diagnosed?

There are guidelines your doctor will use to see if your child has symptoms of autism. The guidelines put symptoms into three categories:

  • Social interactions and relationships.For example, a child may have trouble making eye contact. People with autism may have a hard time understanding someone else’s feelings, such as pain or sadness.
  • Verbal and nonverbal communication.For example, a child may never speak. Or he or she may often repeat a certain phrase over and over.
  • Limited interests in activities or play.For example, younger children often focus on parts of toys rather than playing with the whole toy. Older children and adults may be fascinated by certain topics, like trading cards or license plates.

Your child may also have a hearing test and some other tests to make sure that problems are not caused by some other condition.

How is it treated?

Treatment for autism involves special behavioral training. Behavioral training rewards good behavior (positive reinforcement) to teach children social skills and to teach them how to communicate and how to help themselves as they grow older.

With early treatment, most children with autism learn to relate better to others. They learn to communicate and to help themselves as they grow older.

Depending on the child, treatment may also include such things as speech therapy or physical therapy. Medicine is sometimes used to treat problems such as depression or obsessive-compulsive behaviors.

Exactly what type of treatment your child needs depends on the symptoms, which are different for each child and may change over time. Because people with autism are so different, something that helps one person may not help another. So it’s important to work with everyone involved in your child’s education and care to find the best way to manage symptoms.

How can your family deal with having a child with autism?

An important part of your child's treatment plan is making sure that other family members get training about autism and how to manage symptoms. Training can reduce family stress and help your child function better. Some families need more help than others.

Take advantage of every kind of help you can find. Talk to your doctor about what help is available where you live. Family, friends, public agencies, and autism organizations are all possible resources.

Remember these tips:

  • Plan breaks. Daily demands of caring for a child with autism can take their toll. Planned breaks will help the whole family.
  • Get extra help when your child gets older. The teen years can be a very hard time for children with autism.
  • Get in touch with other families who have children with autism. You can talk about your problems and share advice with people who will understand.

Raising a child with autism is hard work. But with support and training, your family can learn how to cope.

Frequently Asked Questions

Learning about autism:

Being diagnosed:

Getting treatment:

Ongoing concerns:

Living with autism:

Symptoms

Core symptoms

The severity of symptoms varies greatly between individuals, but all people with autism have some core symptoms in the areas of:

  • Social interactions and relationships. Symptoms may include:
    • Significant problems developing nonverbal communication skills, such as eye-to-eye gazing, facial expressions, and body posture.
    • Failure to establish friendships with children the same age.
    • Lack of interest in sharing enjoyment, interests, or achievements with other people.
    • Lack of empathy. People with autism may have difficulty understanding another person's feelings, such as pain or sorrow.
  • Verbal and nonverbal communication. Symptoms may include:
    • Delay in, or lack of, learning to talk. As many as 40% of people with autism never speak.1
    • Problems taking steps to start a conversation. Also, people with autism have difficulties continuing a conversation after it has begun.
    • Stereotyped and repetitive use of language. People with autism often repeat over and over a phrase they have heard previously (echolalia).
    • Difficulty understanding their listener's perspective. For example, a person with autism may not understand that someone is using humor. They may interpret the communication word for word and fail to catch the implied meaning.
  • Limited interests in activities or play. Symptoms may include:
    • An unusual focus on pieces. Younger children with autism often focus on parts of toys, such as the wheels on a car, rather than playing with the entire toy.
    • Preoccupation with certain topics. For example, older children and adults may be fascinated by video games, trading cards, or license plates.
    • A need for sameness and routines. For example, a child with autism may always need to eat bread before salad and insist on driving the same route every day to school.
    • Stereotyped behaviors. These may include body rocking and hand flapping.

Symptoms during childhood

Symptoms of autism are usually noticed first by parents and other caregivers sometime during the child's first 3 years. Although autism is present at birth (congenital), signs of the disorder can be difficult to identify or diagnose during infancy. Parents often become concerned when their toddler does not like to be held; does not seem interested in playing certain games, such as peekaboo; and does not begin to talk. Sometimes, a child will start to talk at the same time as other children the same age, then lose his or her language skills. They also may be confused about their child's hearing abilities. It often seems that a child with autism does not hear, yet at other times, he or she may appear to hear a distant background noise, such as the whistle of a train.

With early and intensive treatment, most children improve their ability to relate to others, communicate, and help themselves as they grow older. Contrary to popular myths about children with autism, very few are completely socially isolated or "live in a world of their own."

Symptoms during teen years

During the teen years, the patterns of behavior often change. Many teens gain skills but still lag behind in their ability to relate to and understand others. Puberty and emerging sexuality may be more difficult for teens who have autism than for others this age. Teens are at an increased risk for developing problems related to depression, anxiety, and epilepsy.

Symptoms in adulthood

Some adults with autism are able to work and live on their own. The degree to which an adult with autism can lead an independent life is related to intelligence and ability to communicate. At least 33% are able to achieve at least partial independence.2

Some adults with autism need a lot of assistance, especially those with low intelligence who are unable to speak. Part- or full-time supervision can be provided by residential treatment programs. At the other end of the spectrum, adults with high-functioning autism are often successful in their professions and able to live independently, although they typically continue to have some difficulties relating to other people. These individuals usually have average to above-average intelligence.

Other symptoms

Many people with autism have symptoms similar to attention deficit hyperactivity disorder (ADHD). But these symptoms, especially problems with social relationships, are more severe for people with autism. For more information, see the topic Attention Deficit Hyperactivity Disorder.

About 10% of people with autism have some form of savant skills—special limited gifts such as memorizing lists, calculating calendar dates, drawing, or musical ability.1

Many people with autism have unusual sensory perceptions. For example, they may describe a light touch as painful and deep pressure as providing a calming feeling. Others may not feel pain at all. Some people with autism have strong food likes and dislikes and unusual preoccupations.

Sleep problems occur in about 40% to 70% of people with autism.3

Other conditions

Autism is one of several types of pervasive developmental disorders (PDDs), also called autism spectrum disorders (ASD). It is not unusual for autism to be confused with other PDDs, such as Asperger's disorder or syndrome, or to have overlapping symptoms. A similar condition is called pervasive developmental disorder-NOS (not otherwise specified). PDD-NOS occurs when children display similar behaviors but do not meet the criteria for autism. It is commonly called just PDD. In addition, other conditions with similar symptoms may also have similarities to or occur with autism.

Exams and Tests

The American Academy of Pediatrics (AAP) recommends screening children for autism during regularly scheduled well-child visits. This policy helps doctors identify signs of autism early in its course. Early diagnosis and treatment can help the child reach his or her full potential.

When a developmental delay is recognized in a child, further testing can help a doctor determine whether the problem is related to autism, another pervasive developmental disorder (PDD), or a condition with similar symptoms, such as language delays or avoidant personality disorder. If your primary care provider does not have specific training or experience in developmental problems, he or she may refer your child to a specialist—usually a developmental pediatrician, psychiatrist, speech therapist, or child psychiatrist— for the additional testing.

  • Behavioral assessments. Various guidelines and questionnaires are used to help a doctor determine the specific type of developmental delay a child has. These include:2
    • Medical history. During the medical history interview, a doctor asks general questions about a child's development, such as whether a child shows parents things by pointing to objects. Young children with autism often point to items they want, but do not point to show parents an item and then check to see if parents are looking at the item being pointed out.
    • Diagnostic guidelines for autism. The American Association of Childhood and Adolescent Psychiatry (AACAP) has established guidelines for diagnosing autism.2 The criteria are designed so a doctor can assess a child's behavior relating to core symptoms of autism. The criteria are designed for children age 3 and older.
    • Other behavioral questionnaires. Additional diagnostic tests focus on children younger than age 3.
    • Clinical observations. A doctor may want to observe the developmentally delayed child in different situations. The parents may be asked to interpret whether certain behaviors are usual for the child in those circumstances.
    • Developmental and intelligence tests. The AACAP also recommends that tests be given to evaluate whether a child's developmental delays affect his or her ability to think and make decisions.
  • Physical assessments and laboratory tests.Other tests may be used to determine whether a physical problem may be causing symptoms. These tests include:
    • Physical examination, including head circumference, weight, and height measurements, to determine whether the child has a normal growth pattern.
    • Hearing tests, to determine whether hearing problems may be causing developmental delays, especially those related to social skills and language use.
    • Testing for lead poisoning, especially if a condition called pica (in which a person craves substances that are not food, such as dirt or flecks of old paint) is present. Children with developmental delays usually continue putting items in their mouth after this stage has passed in normally developing children. This practice can result in lead poisoning, which should be identified and treated as soon as possible.

Additional laboratory tests may be done under specific circumstances. These tests include:

  • Chromosomal analysis, which may be done if mental retardation is present or there is a family history of mental retardation. For example, fragile X syndrome, which causes a range of below-normal intelligence problems as well as autistic-like behaviors, can be identified with a chromosomal analysis.
  • An electroencephalograph (EEG), which is done if there are symptoms of seizures, such as a history of staring spells or if a person reverts to less mature behavior (developmental regression).
  • A magnetic resonance image (MRI), which may be done if there are signs of differences in the structure of the brain.

Early detection

All doctors who see infants and children for well-child visits should watch for early signs of developmental disorders. Developmental screening tools, such as the Ages and Stages Questionnaire or the Modified Checklist for Autism in Toddlers (M-CHAT), can help assess behavior.

If a doctor discovers the following obvious signs of developmental delays, the child should immediately be evaluated:4

  • No babbling, pointing, or other gestures by 12 months
  • No single words by 16 months
  • No 2-word spontaneous phrases by 24 months, with the exception of repeated phrases (echolalia)
  • Any loss of any language or social skills at any age

If there are no obvious signs of developmental delays or any unusual indications from the screening tests, most infants and children do not need further evaluation until the next well-child visit.

But children who have a sibling with autism should continue to be closely monitored, because they are at increased risk for autism and other developmental problems. In addition to the evaluations at well-child visits, these children should undergo testing for language delays, learning problems, poor socialization skills, and any symptoms that might suggest they have anxiety or depression.4

When socialization, learning, or behavior problems develop in a person at any time or at any age, he or she should also be evaluated.

Treatment Overview

Early diagnosis and treatment helps young children with autism develop to their full potential. The primary goal of treatment is to improve the overall ability of the child to function.

Symptoms and behaviors of autism can combine in many ways and vary in severity. In addition, individual symptoms and behaviors often change over time. For these reasons, treatment strategies are tailored to individual needs and available family resources. But, in general, children with autism respond best to highly structured and specialized treatment. A program that addresses helping parents and improving communication, social, behavioral, adaptive, and learning aspects of a child's life will be most successful.

The American Academy of Pediatrics (AAP) recommends the following strategies for helping a child to improve overall function and reach his or her potential:5

  • Behavioral training and management . Behavioral training and management uses positive reinforcement, self-help, and social skills training to improve behavior and communication. Many types of treatments have been developed, including Applied Behavioral Analysis (ABA), Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), and sensory integration.
  • Specialized therapies. These include speech, occupational, and physical therapy. These therapies are important components of managing autism and should all be included in various aspects of the child's treatment program. Speech therapy can help a child with autism improve language and social skills to communicate more effectively. Occupational and physical therapy can help improve any deficiencies in coordination and motor skills. Occupational therapy may also help a child with autism to learn to process information from the senses (sight, sound, hearing, touch, and smell) in more manageable ways.

Many people with autism have sleep problems. These are usually treated by staying on a routine, including a set bedtime and time to get up. Your doctor may try medicines as a last resort.3

Stories about alternative therapies, such as secretin and auditory integration training, have circulated in the media and other information sources. When you are considering any type of treatment, it is important to know the source of information and to ensure that studies are scientifically sound. Accounts of individual success are not sufficient evidence to support using a treatment. Look for large, controlled studies to validate claims.

Experts have not yet identified a way to prevent autism. Public concern over stories linking autism and childhood vaccines has persisted. But numerous studies have failed to show any evidence of a link between autism and the measles-mumps-rubella (MMR) vaccine.6, 7 If you avoid having your children immunized, you put them and others in your community at risk for developing serious diseases, which can cause serious harm or even death.

Home Treatment

Having a child with autism requires taking a proactive approach to learning about the condition and its treatment while working closely with others involved in your child's care. You also need to take care of yourself so that you are able to face the many challenges of having a child with autism.

Educate yourself about autism

Ask your doctor or contact autism organizations to find training about autism and how to manage symptoms. Parent and family education has been shown to reduce family stress and improve a child's functioning.5 Understanding the condition and knowing what to expect is an important part of helping your child develop independence.

Become informed about your child's educational rights. Federal laws require services for handicapped children, including those with autism. In addition, there may be state and local laws or policies to aid children with autism. Find out what services are available for your child in your area.

Learning about autism will also help prepare you for when your child reaches adulthood. Some adults with autism can live by themselves, work, and be as independent as other people their age. Others need continued support.

Work closely with others who care for your child

Close communication with others involved in your child's education and care will help all concerned. The best treatment for children with autism is a team approach and a consistent, structured program. Everyone involved needs to work together to set goals for:

  • Education.
  • Identifying and managing symptoms of autism and any related conditions.
  • Behavior and interactions with family and peers, adjustment to different environments, and social and communication skills.

Work closely with the health professionals involved in your child's care. It is important that they take time to listen to your concerns and are willing to work with you.

Take care of yourself

Learn ways to handle the normal range of emotions, fears, and concerns that go along with raising a child with autism. The daily and long-term challenges put you and your other children at an increased risk for depression or stress-related illnesses. The way you handle these issues influences other family members.

  • Get involved in a hobby, visit with friends, and learn ways to relax.
  • Seek and accept support from others. Consider using respite care, which is a family support service that provides a break for parents and siblings. In addition, support groups for parents and siblings are generally available. People who participate in support groups can benefit from others' experiences. For more information on support groups in your area, contact the Autism Society of America at www.autism-society.org.
  • Talk with a doctor about whether counseling would help if you or one of your children is having trouble handling the strains related to having a family member with autism.

Other Places To Get Help

Books

Educating Children With Autism
Author/Editor: Committee on Educational Interventions for Children With Autism
Publisher: National Academies Press
 
Washington, DC  20055
Publication Date: 2001
 

This book is a summary of research by the Committee on Educational Interventions for Children with Autism. This committee designed their research to answer questions on how best to help children with autism using all available resources. Parents, teachers, health professionals, and policy makers should find helpful information. Specifically, the book discusses the following areas related to autism:

  • Diagnosis, assessment, and prevalence
  • Role of families
  • Goals for educational services
  • Characteristics of effective programs
  • Public policies
  • Training for people who work with autistic children
  • Areas where more research is needed

Healthcare for Children on the Autism Spectrum: A Guide to Medical, Nutritional, and Behavioral Issues
Author/Editor: F.R. Volkmar
L.A. Wiesner
Publisher: Woodbine House
6510 Bells Mill Road
Bethesda, MD  20817
Publication Date: 2004
 

This book provides practical information to help you manage your child's medical care. Parents can find answers to help them understand autism symptoms and behaviors, evaluate medications or alternative therapies, communicate with health professionals, and deal with many other health care concerns.


Understanding Autism Spectrum Disorders
Author/Editor: American Academy of Pediatrics
Publisher: American Academy of Pediatrics
141 Northwest Point Boulevard
Elk Grove Village, IL  60007-1098
Publication Date: 2006
 

This booklet provides information and answers to common questions about autism spectrum disorders (ASD). The booklet is written mainly for parents of children with autism spectrum disorders.


Organizations

Autism and PDD Support Network
14271 Jeffrey #3
Irvine, CA  92620
Web Address: www.autism-pdd.net
 

The Autism and PDD (Pervasive Developmental Disorders) Support Network provides resources for parents and caregivers of children with autism. The Web site includes a message board where people who are affected by autism can ask questions and share their experiences.


Centers for Disease Control and Prevention (CDC): National Center on Birth Defects and Developmental Disabilities (NCBDDD)
1600 Clifton Road
Atlanta, GA  30333
Phone: 1-800-232-4636 (1-800-CDC-INFO)
TDD: 1-888-232-6348
E-mail: cdcinfo@cdc.gov
Web Address: www.cdc.gov/ncbddd
 

NCBDDD aims to find the cause of and prevent birth defects and developmental disabilities. This agency works to help people of all ages with disabilities live to the fullest. The Web site has information on many topics, including genetics, autism, ADHD, fetal alcohol spectrum disorders, diabetes and pregnancy, blood disorders, and hearing loss.


MAAP Services for Autism and Asperger Syndrome
P.O. Box 524
Crown Point, IN  46308
Phone: (219) 662-1311
Fax: (219) 662-0638
E-mail: info@maapservices.org
Web Address: www.maapservices.org
 

An excellent source of information and advice for families, this organization publishes a quarterly newsletter and provides support group information and other services.


References

Citations

  1. Volkmar FR, et al. (2005). Pervasive developmental disorders. In BJ Sadock, VA Sadock, eds., Kaplan and Sadock's Comprehensive Textbook of Psychiatry, 8th ed., vol. 2, pp. 3164–3182. Philadelphia: Lippincott Williams and Williams.
  2. American Psychiatric Association (2000). Autistic disorder. In Diagnostic and Statistical Manual of Mental Disorders, 4th ed., text rev., pp. 70–75. Washington, DC: American Psychiatric Association.
  3. Zachor DA (2006). Autism. In FD Burg et al., eds., Current Pediatric Therapy, 18th ed., pp. 1219–1226. Philadelphia: Saunders Elsevier.
  4. Filipek PA, et al. (2000). Practice parameter: Screening and diagnosis of autism: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 55: 468–479.
  5. Committee on Children with Disabilities, American Academy of Pediatrics (2001). Technical report: The pediatrician's role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107(5): 1–18.
  6. Centers for Disease Control and Prevention (2008). Mercury and Vaccines (Thimerosal). Available online: http://www.cdc.gov/vaccinesafety/concerns/thimerosal.htm.
  7. Schechter R, et al. (2008). Continuing increases in autism reported to California's developmental services system. Archives of General Psychiatry, 65(1): 19–24.

Other Works Consulted

  • Dumont-Mathieu T, Fein D (2005). Screening for autism in young children: The Modified Checklist for Autism in Toddlers (M-CHAT) and other measures. Mental Retardation and Developmental Disabilities Research Reviews, 11(3): 253–262.
  • Filipek PA, et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29(6): 439–484.
  • Parr J (2007). Autism, search date May 2006. Online version of Clinical Evidence. Also available online: http://www.clinicalevidence.com.
  • Piven J (1997). The biological basis of autism. Current Opinion in Neurobiology, 7: 708–712.
  • Robins DL, et al. (2001). The Modified Checklist for Autism in Toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31(2): 131–144.
  • Vastag B (2001). Congressional autism hearings continue: No evidence MMR vaccine causes disorder. JAMA, 285(20): 2567–2569.
  • Wong V, et al. (2004). A modified screening tool for autism (Checklist for Autism in Toddlers [CHAT-23]) for Chinese children. Pediatrics, 114(2): 166–176.

Credits

Author Jeannette Curtis
Editor Susan Van Houten, RN, BSN, MBA
Associate Editor Pat Truman, MATC
Primary Medical Reviewer Michael J. Sexton, MD - Pediatrics
Specialist Medical Reviewer Fred Volkmar, MD - Child and Adolescent Psychiatry
Last Updated May 19, 2008

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