Autism

Isolated in worlds of their own, people with autism appear indifferent and remote and are unable to form emotional bonds with others. Although people with this baffling brain disorder can display a wide range of symptoms and disability, many are incapable of understanding other people's thoughts, feelings, and needs. Often, language and intelligence fail to develop fully, making communication and social relationships difficult. Many people with autism engage in repetitive activities, like rocking or banging their heads, or rigidly following familiar patterns in their everyday routines. Some are painfully sensitive to sound, touch, sight, or smell.

But there is help-and hope. Gone are the days when people with autism were isolated, typically sent away to institutions. Today, many youngsters can be helped to attend school with other children. Methods are available to help improve their social, language, and academic skills. Even though more than 60 percent of adults with autism continue to need care throughout their lives, some programs are beginning to demonstrate that with appropriate support, many people with autism can be trained to do meaningful work and participate in the life of the community.

Autism is found in every country and region of the world, and in families of all racial, ethnic, religious, and economic backgrounds. Emerging in childhood, it affects about 1 or 2 people in every thousand and is three to four times more common in boys than girls. Girls with the disorder, however, tend to have more severe symptoms and lower intelligence. In addition to loss of personal potential, the cost of health and educational services to those affected exceeds $3 billion each year. So, at some level, autism affects us all.

What is Autism?

Autism is a brain disorder that typically affects a person's ability to communicate, form relationships with others, and respond appropriately to the environment. Some people with autism are relatively high-functioning, with speech and intelligence intact. Others are mentally retarded, mute, or have serious language delays. For some, autism makes them seem closed off and shut down; others seem locked into repetitive behaviors and rigid patterns of thinking.

Although people with autism do not have exactly the same symptoms and deficits, they tend to share certain social, communication, motor, and sensory problems that affect their behavior in predictable ways.

Social symptoms
From the start, most infants are social beings. Early in life, they gaze at people, turn toward voices, endearingly grasp a finger, and even smile.

In contrast, most children with autism seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem to prefer being alone. They may resist attention and affection or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to anger or affection. Unlike other children, they rarely become upset when the parent leaves or show pleasure when the parent returns. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of response.

Children with autism also take longer to learn to interpret what others are thinking and feeling. Subtle social cues-whether a smile, a wink, or a grimace-may have little meaning. To a child who misses these cues, "Come here," always means the same thing, whether the speaker is smiling and extending her arms for a hug or squinting and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. Even in their own communication with others, their facial expressions, movements, and gestures rarely match what they are saying. Their tone of voice also fails to reflect their feelings. A high-pitched, sing-song, or flat, robot-like voice is common.

To compound the problem, people with autism have problems seeing things from another person's perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with autism may lack such understanding. This inability leaves them unable to predict or understand other people's actions.

Some people with autism also tend to be physically aggressive at times, making social relationships still more difficult. Some lose control, particularly when they're in a strange or overwhelming environment, or when angry and frustrated. They are capable at times of breaking things, attacking others, or harming themselves. Alan, for example, may fall into a rage, biting and kicking when he is frustrated or angry. Paul, when tense or overwhelmed, may break a window or throw things. Others are self-destructive, banging their heads, pulling their hair, or biting their arms.

Language difficulties
Research shows that about half of the children diagnosed with autism remain mute throughout their lives. Some infants who later show signs of autism do coo and babble during the first 6 months of life. But they soon stop. Although they may learn to communicate using sign language or special electronic equipment, they may never speak. Others may be delayed, developing language as late as age 5 to 8.

Those who do speak often use language in unusual ways. Some seem unable to combine words into meaningful sentences. Some speak only single words. Others repeat the same phrase no matter what the situation.

Some children with autism are only able to parrot what they hear, a condition called echolalia. Without persistent training, echoing other people's phrases may be the only language that people with autism ever acquire.

Without meaningful gestures or the language to ask for things, people with autism are at a loss to let others know what they need. As a result, children with autism may simply scream or grab what they want.

Repetitive behaviors and obsessions
Although children with autism usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. A child might spend hours repeatedly flicking or flapping her fingers or rocking back and forth. Many flail their arms or walk on their toes. Some suddenly freeze in position. Experts call such behaviors stereotypies or self-stimulation.

Some children with autism also tend to repeat certain actions over and over. A child might spend hours lining up pretzel sticks, and some children with autism develop troublesome fixations with specific objects, which can lead to unhealthy or dangerous behaviors.

For unexplained reasons, people with autism demand consistency in their environment. Many insist on eating the same foods, at the same time, sitting at precisely the same place at the table every day. They may get furious if a picture is tilted on the wall, or wildly upset if their toothbrush has been moved even slightly. A minor change in their routine, like taking a different route to school, may be tremendously upsetting.

Sensory symptoms
Children with autism seem to have problems in the sensory signals that reach the brain or in the integration of the sensory signals-and quite possibly, both.

Apparently, as a result of a brain malfunction, many children with autism are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells.

In autism, the brain also seems unable to balance the senses appropriately. Some children with autism seem oblivious to extreme cold or pain, but react hysterically to things that wouldn't bother other children. A child with autism may break her arm in a fall and never cry. Another child might bash his head on the wall without a wince. On the other hand, a light touch may make the child scream with alarm.

In some people, the senses are even scrambled. One child gags when she feels a certain texture. A man with autism hears a sound when someone touches a point on his chin. Another experiences certain sounds as colors.

Unusual Abilities
Some people with autism display remarkable abilities. A few demonstrate skills far out of the ordinary. At a young age, when other children are drawing straight lines and scribbling, some children with autism are able to draw detailed, realistic pictures in three-dimensional perspective. Some toddlers who are autistic are so visually skilled that they can put complex jigsaw puzzles together. Many begin to read exceptionally early-sometimes even before they begin to speak. Some who have a keenly developed sense of hearing can play musical instruments they have never been taught, play a song accurately after hearing it once, or name any note they hear. However, such skills, known as islets of intelligence or savant skills are rare.

How is Autism Diagnosed?

Parents are usually the first to notice unusual behaviors in their child. In many cases, their baby seemed "different" from birth-being unresponsive to people and toys, or focusing intently on one item for long periods of time. The first signs of autism may also appear in children who had been developing normally. When an affectionate, babbling toddler suddenly becomes silent, withdrawn, violent, or self-abusive, something is wrong.

Even so, years may go by before the family seeks a diagnosis. Well-meaning friends and relatives sometimes help parents ignore the problems with reassurances that "Every child is different," or "Janie can talk-she just doesn't want to!" Unfortunately, this only delays getting appropriate assessment and treatment for the child.

Diagnostic procedures
To date, there are no medical tests like x-rays or blood tests that detect autism. And no two children with the disorder behave the same way. In addition, several conditions can cause symptoms that resemble those of autism. So parents and the child's pediatrician need to rule out other disorders, including hearing loss, speech problems, mental retardation, and neurological problems. But once these possibilities have been eliminated, a visit to a professional who specializes in autism is necessary. Such specialists include people with the professional titles of child psychiatrist, child psychologist, developmental pediatrician, or pediatric neurologist.

Autism specialists use a variety of methods to identify the disorder. Using a standardized rating scale, the specialist closely observes and evaluates the child's language and social behavior. A structured interview is also used to elicit information from parents about the child's behavior and early development. The specialists may also test for certain genetic and neurological problems.

Specialists may also consider other conditions that produce many of the same behaviors and symptoms as autism, such as Rett's Disorder or Asperger's Disorder.

Diagnostic criteria
After assessing observations and test results, the specialist makes a diagnosis of autism only if there is clear evidence of:

• poor or limited social relationships
• underdeveloped communication skills
• repetitive behaviors, interests, and activities.

People with autism generally have some impairment within each category, although the severity of each symptom may vary. The diagnostic criteria also require that these symptoms appear by age 3.

However, some specialists are reluctant to give a diagnosis of autism. They fear that it will cause parents to lose hope. As a result, they may apply a more general term that simply describes the child's behaviors or sensory deficits. "Severe communication disorder with autism-like behaviors," "multi-sensory system disorder," and "sensory integration dysfunction" are some of the terms that are used. Children with milder or fewer symptoms are often diagnosed as having Pervasive Developmental Disorder (PDD).

What Causes Autism?

It is generally accepted that autism is caused by abnormalities in brain structures or functions. Using a variety of new research tools to study human and animal brain growth, scientists are discovering more about normal development and how abnormalities occur.

The brain of a fetus develops throughout pregnancy. Starting out with a few cells, the cells grow and divide until the brain contains billions of specialized cells, called neurons. Research sponsored by NIMH and other components at the National Institutes of Health is playing a key role in showing how cells find their way to a specific area of the brain and take on special functions. Once in place, each neuron sends out long fibers that connect with other neurons. In this way, lines of communication are established between various areas of the brain and between the brain and the rest of the body. As each neuron receives a signal it releases chemicals called neurotransmitters, which pass the signal to the next neuron. By birth, the brain has evolved into a complex organ with several distinct regions and subregions, each with a precise set of functions and responsibilities.

But brain development does not stop at birth. The brain continues to change during the first few years of life, as new neurotransmitters become activated and additional lines of communication are established. Neural networks are forming and creating a foundation for processing language, emotions, and thought.

Are There Accompanying Disorders?

Several disorders commonly accompany autism. To some extent, these may be caused by a common underlying problem in brain functioning.

Mental retardation
Of the problems that can occur with autism, mental retardation is the most widespread. Seventy-five to 80 percent of people with autism are mentally retarded to some extent. Fifteen to 20 percent are considered severely retarded, with IQs below 35. (A score of 100 represents average intelligence.) But autism does not necessarily correspond with mental impairment. More than 10 percent of people with autism have an average or above average IQ. A few show exceptional intelligence.

Interpreting IQ scores is difficult, however, because most intelligence tests are not designed for people with autism. People with autism do not perceive or relate to their environment in typical ways. When tested, some areas of ability are normal or even above average, and some areas may be especially weak. For example, a child with autism may do extremely well on the parts of the test that measure visual skills but earn low scores on the language subtests.

Seizures
About one-third of the children with autism develop seizures, starting either in early childhood or adolescence. Researchers are trying to learn if there is any significance to the time of onset, since the seizures often first appear when certain neurotransmitters become active.

Fragile X
One disorder, Fragile X syndrome, has been found in about 10 percent of people with autism, mostly males. This inherited disorder is named for a defective piece of the X-chromosome that appears pinched and fragile when seen under a microscope.

Tuberous Sclerosis
There is also some relationship between autism and Tuberous Sclerosis, a genetic condition that causes abnormal tissue growth in the brain and problems in other organs. Although Tuberous Sclerosis is a rare disorder, occurring less than once in 10,000 births, about a fourth of those affected are also autistic.

Books For Further Reading

For Children

Amenta, C. Russell is Extra Special. New York: Magination Press, 1992.

Gold, P. Please Don't Say Hello. New York: Human Sciences Press/Plenum Publications, 1986.

Katz, I., and Ritvo, E. Joey and Sam. Northridge, CA: Real Life Storybooks, 1993.

For Parents

Baron-Cohen, S., and Bolton, B. Autism: The Facts. New York: Oxford University Press, 1993.

Harris, S., and Handelman, J. eds. Preschool Programs for Children with Autism . Austin, TX: PRO-ED, 1993.

Hart, C. A Parent's Guide to Autism, New York: Simon & Schuster, Pocket Books, 1993.

Powers, M. Children with Autism: A Parents' Guide. Rockville, MD: Woodbine House, 1989.

Advocacy Manual: A Parent's How-to Guide for Special Education Services. Pittsburgh: Learning Disabilities Association of America, 1992.

Directory for Exceptional Children: A Listing of Educational and Training Facilities. Boston: Porter Sargent Publications, 1994.

Pocket Guide to Federal Help for Individuals with Disabilities. Pueblo, CO: U. S. Government Printing Office, Consumer Information Center.

For Teachers and Other Professionals

Aarons, M., and Gittens, T. The Handbook of Autism. A Guide for Parents and Professionals . New York: Tavistock/Routledge, 1992.

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Washington, D.C.: American Psychiatric Association, 1994.

Groden, G., and Baron, M., eds. Autism: Strategies for Change. New York: Gardner Press, 1988. VSimmons, J. The Hidden Child. Rockville, MD: Woodbine House, 1987.

Simpson, R., and Zionts, P. Autism : Information and Resources for Parents, Families, and Professionals. Austin, TX: PRO-ED, 1992.

Smith, M. Autism and Life in the Community: Successful Interventions for Behavioral Challenges. Baltimore: Paul H. Brookes Publishing Co., 1990.

Smith, M., Belcher, R., and Juhrs, P. A Guide to Successful Employment for Individuals with Autism. Baltimore: Paul H. Brookes Publishing Co., 1995.

Autobiographies of People Dealing with Autism

Barron, J., and Barron, S. There's a Boy in Here, New York: Simon and Schuster, 1992.

Grandin, T. Thinking In Pictures and Other Reports From My Life with Autism. New York: Doubleday, 1995.

Grandin, T. Emergence: Labeled Autistic. Novato, CA: Arena Press, 1986.

Hart, C. Without Reason: A Family Copes with Two Generations of Autism. New York: Harper & Row, 1989.

Maurice, C. Let Me Hear Your Voice.: A Family's Triumph over Autism . New York: Knopf, 1993.

Miedzianik, D. I Hope Some Lass Will Want Me After Reading All This. Nottingham England: Nottingham University, 1986.

Park, C. The Siege. New York: Harcourt, Brace, World, 1967.

Williams, D. Somebody Somewhere. New York: Times Books, 1994.

Scientific Publications

Folstein SE, et al. "Predictors of cognitive test patterns in autism families." J Child Psychol Psychiatry. 1999 Oct;40(7):1117-28.

Gillberg C. "Neurodevelopmental processes and psychological functioning in autism." Dev Psychopathol. 1999 Summer;11(3):567-87. Review.

Konstantareas MM, et al. "Chromosomal abnormalities in a series of children with autistic disorder." J Autism Dev Disord. 1999 Aug;29(4):

Martin A, et al. "Higher-functioning pervasive developmental disorders: rates and patterns of psychotropic drug use." J Am Acad Child Adolesc Psychiatry. 1999 Jul;38(7):923-31

For further research: www.ncbi.nlm.nih.gov/pubmed

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On the Web

http://www.nimh.nih.gov/publicat/autismmenu.cfm

http://www.nimh.nih.gov/publicat/autismresfact.cfm

http://www.nlm.nih.gov/medlineplus/autism.html

http://www.aacap.org/publications/factsfam/autistic.htm

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Support Groups and Organizations

American Association of University Affiliated Programs for Persons with Developmental Disabilities
(AAUAP)
8630 Fenton Street
Suite 410
Silver Spring, MD 20910
(301) 588-8252

Prepares professionals for careers in the field of developmental disabilities. Also provides technical assistance and training, and disseminates information to service providers to support the independence, productivity, integration, and inclusion into the community of persons with developmental disabilities and their families.

American Speech-Language-Hearing Association
10801 Rockville Pike
Rockville, MD 20852
(800) 638-8255

Provides information on speech, language, and hearing disorders, as well as referrals to certified speech-language pathologists and audiologists.

The Association of Persons with Severe Handicaps (TASH)
29 West Susquehanna Avenue
Suite 210
Baltimore, MD 21204
(410) 828-8274

An advocacy group that works toward school and community inclusion of children and adults with disabilities. Provides information and referrals to services. Publishes a newsletter and journal.

The Autism National Committee
635 Ardmore Avenue
Ardmore, PA 19003
(610)649-9139

Publishes "The Communicator," provides referrals, and sponsors an annual conference.

Autism Research Institute
4182 Adams Ave.
San Diego, CA 92116
(619) 281-7165

Publishes the quarterly journal, Autism Research Review International. Provides up to date information on current research.

Autism Society of America, Inc.
7910 Woodmont Avenue
Suite 650
Bethesda, MD 20814
(301) 657-0881 or (800)-3-AUTISM

Provides a wide range of services and information to families and educators. Organizes a national conference. Publishes The Advocate, with articles by parents and autism experts. Local chapters make referrals to regional programs and services, and sponsor parent support groups. Offers information on educating children with autism, including a bibliography of instructional materials for and about children with special needs.

The Beach Center on Families and Disability
3111 Haworth Hall
University of Kansas
Lawrence, KA 66045
(913) 864-7600

Provides professional and emotional support, as well as education and training materials to families with members who have disabilities. Collaborates with professionals and policy makers to influence national policy toward people with developmental disabilities.

Council for Exceptional Children
11920 Association Drive
Reston, VA 20191-1589
(703) 620-3660 or (800) 641-7824

Provides publications for educators. Can also provide referral to ERIC Clearinghouse for Handicapped and Gifted Children.

Cure Autism Now (CAN)
5225 Wilshire Boulevard
Suite 503
Los Angeles, CA 90036
(213) 549-0500

Serves as an information exchange for families affected by autism. Founded by parents dedicated to finding effective biological treatments for autism. Sponsors talks, conferences, and research.

Department of Education
Office of Special Education Programs
330 C Street, SW
Mail Stop 2651
Washington, DC 20202
(202) 205-9058, (202) 205-8824

Federal agency providing information on educational rights under the law, as well as referrals to the Parent Training Information Center and Protection and Advocacy Agency in each state.

Division TEACCH
Campus Box 7180
University of North Carolina
Chapel Hill, NC 27599-7180
(919) 966-2173

Publishes the Journal of Autism and Developmental Disorders. Also offers workshops for parents and professionals.

Federation of Families for Children's Mental Health
1021 Prince Street
Alexandria, VA 22314
(703) 684-7710

Provides information, support, and referrals through local chapters throughout the country. This national parent-run organization focuses on the needs of families of children and youth with emotional, behavioral, or mental disorders.

Indiana Resource Center on Autism
Institute for the Study of Developmental Disabilities
Indiana University
2853 East Tenth Street
Bloomington, IN 47408-2601
(812) 855-6508

Offers publications, films and videocassettes on a range oftopics related to autism.

National Alliance for Autism Research
414 Wall Street, Research Park
Princeton, NJ 08540
(888)-777-NAAR; (609) 430-9160

Dedicated to advancing biomedical research into the causes, prevention, and treatment of the autism spectrum disorders. Sponsors research and conferences.

National Information Center for Children and Youth with Disabilities (NICHCY)
P.O. Box 1492
Washington, DC 20013-1492
(800) 695-0285

Publishes information for the public and professionals in helping youth become participating members of the home and the community.

National Institute of Child Health and Human Development
Bldg 31, Room 2A32, MSC 2425
31 Center Drive
Bethesda, MD 20892-2425
(800) 370-2943
email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Web site address: www.nichd.nih.gov/default.htm

National Institute of Mental Health (NIMH)
Office of Communication and Public Liaison
Information Resources and Inquiries Branch
6001 Executive Boulevard, Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
Phone: 301-443-4513
Fax: 301-443-4279
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Fax back system: Mental Health FAX4U at 301-443-5158
Web site address:www.nimh.nih.gov

National Institutes of Health agencies that sponsor research on autism and related disorders

National Institute of Child Health and Human Development
P.O. Box 29111
Washington, D.C. 20040
(301) 496-5133

National Institute on Deafness and Other Communication Disorders
31 Center Drive
MSC 2320; Room 3C35
Bethesda, MD 20892
(800) 241-1044, (301) 496-7243

National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424, (301) 496-5751