Autism and Asperger Syndrome

DISABILITY CATEGORY: Autism (and Asperger Syndrome)

TYPES: Under the category of Pervasive Developmental Disorders (PDD), autism and Asperger disorder are two of five disorders that are identified: (1) Autistic Disorder, (2) Rett's Disorder, (3) Childhood Disintegrative Disorder, (4) Asperger Disorder, and (5) Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS).

DEFINITION: 

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines autism as...

            “...a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.” [34 Code of Federal Regulations §300.7(c)(1).]

Other definitions: Asperger Disorder, also referred to as Asperger or Asperger Syndrome, is a developmental disorder characterized by a lack of social skills; difficulty with social relationships; poor coordination and poor concentration; and a restricted range of interests, but normal intelligence and adequate language skills in the areas of vocabulary and grammar. Asperger Disorder appears to have a somewhat later onset than Autistic Disorder, or at least is recognized later. An individual with Asperger Disorder does not possess a significant delay in language development; however, he or she may have difficulty understanding the subtleties used in conversation, such as irony and humor. Also, while many individuals with autism have mental retardation, a person with Asperger possesses an average to above average intelligence (Autism Society of America, 1995). Asperger is sometimes incorrectly referred to as "high-functioning autism." (Source: National Dissemination Center for Children with Disabilities, 2003)

FACTS AND STATS: Data from several studies that used the current criteria for diagnosing autism and autism spectrum disorders (ASD), such as Asperger disorder and pervasive developmental disabilities (PDD-NOS), found prevalence rates for ASDs between 2 and 6 per 1,000 individuals. Therefore, it can be summarized that between 1 in 500 (2/1,000) to 1 in 166 children (6/1,000) have an ASD.

There is not a full population count of all individuals with an ASD in the United States. However, using the prevalence data stated above, we can estimate that if 4 million children are born in the United States every year, approximately 24,000 of these children will eventually be diagnosed with an ASD. Assuming the prevalence rate has been constant over the past two decades, we can estimate that up to 500,000 individuals between the ages of 0 to 21 have an ASD. However, many of these individuals may not be classified as having an ASD until school-age or later. Since behaviors related to the ASDs are usually present before the age of 3 years, it is important to make sure the individuals are being identified and are receiving appropriate intervention services as early as possible. (Source: Centers for Disease Control and Prevention, 2006)

CAUSES: 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 autistic versus non-autistic 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 autistic children 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. (Source: Autism Society of America)

PREVENTION: Since the cause of autism (and Asperger Syndrome) is unknown, means of prevention are also unknown. After much research, government health authorities can find no link between the MMR (measles, mumps and rubella) vaccine and autism. (Source: National Health Service)

CHARACTERISTICS: Some or all of the following characteristics of autism or PDD may be observed in mild to severe forms:

• Communication problems (e.g., using and understanding language)

• Difficulty relating to people, objects, and events

• Unusual play with toys and other objects

• Difficulty with changes in routine or familiar surroundings

• Repetitive body movements or behavior patterns

Children with autism or PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have language that often includes repeated phrases or conversations. Children with more advanced language skills tend to use a small range of topics and have difficulty with abstract concepts. Repetitive play skills, a limited range of interests, and impaired social skills are generally evident as well. Unusual responses to sensory information—for example, loud noises, lights, certain textures of food or fabrics—are also common. (Source: NICHCY)

Characteristics specific to Asperger Syndrome: The most distinguishing symptom of AS is a child’s obsessive interest in a single object or topic to the exclusion of any other.  Children with AS want to know everything about their topic of interest and their conversations with others will be about little else.  Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors. Other characteristics of AS include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior and the inability to interact successfully with peers; problems with non-verbal communication; and clumsy and uncoordinated motor movements.

Children with AS are isolated because of their poor social skills and narrow interests.  They may approach other people, but make normal conversation impossible by inappropriate or eccentric behavior, or by wanting only to talk about their singular interest. Children with AS usually have a history of developmental delays in motor skills such as pedaling a bike, catching a ball, or climbing outdoor play equipment. They are often awkward and poorly coordinated with a walk that can appear either stilted or bouncy.  (Source: NINDS)

MEDICAL TREATMENT:

Autism: There is no cure for autism.  Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement.  The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism:  impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests.  Most professionals agree that the earlier the intervention, the better. (Source: NINDS)

Asperger: The ideal treatment for AS coordinates therapies that address the three core symptoms of the disorder:  poor communication skills, obsessive or repetitive routines, and physical clumsiness.  There is no single best treatment package for all children with AS, but most professionals agree that the earlier the intervention, the better. 

An effective treatment program builds on the child’s interests, offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the child’s attention in highly structured activities, and provides regular reinforcement of behavior.  It may include social skills training, cognitive behavioral therapy, medication for co-existing conditions, and other measures. (Source: NINDS)

PROGNOSIS:

Autism: For many children, autism symptoms improve with treatment and with age.  Some children with autism grow up to lead normal or near-normal lives.  Children whose language skills regress early in life, usually before the age of 3, appear to be at risk of developing epilepsy or seizure-like brain activity.  During adolescence, some children with autism may become depressed or experience behavioral problems.  Parents of these children should be ready to adjust treatment for their child as needed. (Source: NINDS)

Asperger: With effective treatment, children with AS can learn to cope with their disabilities, but they may still find social situations and personal relationships challenging.  Many adults with AS are able to work successfully in mainstream jobs, although they may continue to need encouragement and moral support to maintain an independent life. (Source: NINDS)

EDUCATIONAL IMPLICATIONS:

Autism: Educating children with autism is a challenge for both parents and teachers. These children are individuals first and foremost with unique strengths and weaknesses. Some may be of average to above average intelligence, while others may be below average. Academic goals need to be tailored to that individual's intellectual ability and functioning level. (Source: ASA)

Asperger: Because children with Asperger Disorder may be only mildly affected, they may begin school prior to being diagnosed. During the elementary years, behavioral issues and immaturity may be a problem but academically, these children frequently do quite well. The ability to memorize information, do calculations and focus intensively serves them well. But as they move through the school system, difficulties with social skills, language and obsessive behaviors become more problematic and may leave them vulnerable to teasing from classmates. (Source: ASA)

To provide effective instruction for students with autism and Asperger Syndrome, some general considerations should be addressed:

• Make sure directions are given step-by-step, verbally, visually, and by providing physical supports or prompts, as needed by the student. Students with autism spectrum disorders often have trouble interpreting facial expressions, body language, and tone of voice. Be as concrete and explicit as possible in your instructions and feedback to the student.

• Find out what the student’s strengths and interests are and emphasize them. Tap into those avenues and create opportunities for success. Give positive feedback and lots of opportunities for practice.

• Build opportunities for the student to have social/collaborative interactions throughout the regular school day. Provide support, structure, and lots of feedback.

• If behavior is a significant issue for the student, seek help from expert professional resources (including parents) to understand the meanings of the behaviors and to develop a unified, positive approach to resolving them.

• Have consistent routines and schedules. When you know a change in routine will occur (e.g., a field trip or assembly) prepare the student by telling him or her what is going to be different and what to expect or do. Reward students for each small success.

• Work together with the student’s parents and other school personnel to create and implement an educational plan tailored to meet the student’s needs. Regularly share information about how the student is doing at school and at home. (Source: NICHCY)

ORGANIZATIONS:

Autism National Committee (AUTCOM)
P.O. Box 429
Forest Knolls, CA   94933
http://www.autcom.org

The Autism National Committee (AUTCOM) is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches. The organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior. In the face of social policies of devaluation, which are expressed in the practices of segregation, medicalization, and aversive conditioning, we assert that all individuals are created equal and endowed with certain inalienable rights, and that among these are life, liberty, and the pursuit of happiness.

Autism Network International (ANI)
P.O. Box 35448
Syracuse, NY   13235-5448
http://ani.autistics.org

Autism Network International is an autistic-run self-help and advocacy organization for autistic people. ANI provides a forum for autistic people to share information, peer support, and tips for coping and problem-solving. The organization advocates for appropriate services and civil rights for ALL autistic people and provides a social outlet for autistic people to explore and participate in autistic social experiences. ANI also helps autistic people who are unable to participate directly by providing information and referrals for parents and teachers, and by educating the public about autism.

Autism Research Institute (ARI)
4182 Adams Avenue
San Diego, CA   92116
619-281-7165
http://www.autismwebsite.com/ari/index.htm

The Autism Research Institute (ARI), a non-profit organization, was established in 1967. ARI is primarily devoted to conducting research, and to disseminating the results of research, on the causes of autism and on methods of preventing, diagnosing and treating autism and other severe behavioral disorders of childhood. We provide information based on research to parents and professionals throughout the world.

Autism Society of America (ASA)
7910 Woodmont Ave.
Suite 300
Bethesda, MD   20814-3067
301-657-0881 800-3AUTISM (328-8476)
http://www.autism-society.org

Over the last 40 years, the Society has grown from a handful of parents, into the leading source of information, research, and reference on autism. ASA is the oldest and largest grassroots organization within the autism community. ASA is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. The Society and its chapters share a common mission of providing information and education, and supporting research and advocating for programs and services for the autism community.

Cure Autism Now (CAN) Foundation
5455 Wilshire Blvd.
Suite 2250
Los Angeles, CA   90036-4234
323-549-0500 888-8AUTISM (828-8476)
http://www.cureautismnow.org

Cure Autism Now (CAN) is an organization of parents, clinicians and leading scientists committed to accelerating the pace of biomedical research in autism through raising money for research projects, education and outreach. Founded by parents of children with autism in 1995, the organization has grown from a kitchen-table effort to the largest provider of support for autism research and resources in the country. The organization's primary focus is to fund essential research through a variety of programs designed to encourage innovative approaches toward identifying the causes, prevention, treatment and a cure for autism and related disorders.

MAAP Services for Autism, Asperger, and PDD
P.O. Box 524
Crown Point, IN   46308
219-662-1311
http://www.maapservices.or

MAAP Services for Autism and Asperger Spectrum is a nonprofit organization dedicated to providing information and advice to families of more advanced individuals with Autism, Asperger syndrome, and Pervasive developmental disorder (PDD). Through its quarterly newsletter, The MAAP, the organization provides the opportunity for parents and professionals to network with others in similar circumstances and to learn about more advanced individuals within the autism spectrum.

National Alliance for Autism Research (NAAR)
99 Wall Street
Research Park
Princeton, NJ   08540
609-430-9160 888-777-NAAR (6227) California: 310-230-3568
http://www.naar.org

The National Alliance for Autism Research (NAAR) is the first organization in the U.S. dedicated to funding and accelerating biomedical research focusing on autism spectrum disorders. Established in 1994 by parents of children with autism concerned about the limited amount of funding available for autism research, NAAR was created in a spirit of optimism and excitement over the opportunities for accelerating the pace of autism research.

National Autism Association
1330 W. Schatz Lane
Nixa, MO 65714
877-622-2884
http://www.nationalautismassociation.org

The mission of the National Autism Association is to educate and empower families affected by autism and other neurological disorders, while advocating on behalf of those who cannot fight for their own rights. We will educate society that autism is not a lifelong incurable genetic disorder but one that is biomedically definable and treatable. We will raise public and professional awareness of environmental toxins as causative factors in neurological damage that often results in an autism or related diagnosis. We will encourage those in the autism community to never give up in their search to help their loved ones reach their full potential, funding efforts toward this end through appropriate research for finding a cure for the neurological damage from which so many affected by autism suffer.

Professional Development in Autism Center
206-543-4011
http://depts.washington.edu/pdacent/

The Professional Development in Autism Center (PDA) provides training and support for school districts, families and communities to ensure that students with ASD have access to high quality, evidence-based educational services in his or her local school district. The PDA Center has 6 sites located around the country that provide training and support to schools and families in providing services for students with ASD.

A.S.P.E.N. Asperger Syndrome Education Network
9 Aspen Circle
Edison, NJ 08820
732-321-0880
http://www.aspennj.org

A national non-profit organization headquartered in New Jersey that provides education and support to families and individuals affected with Asperger Syndrome, PDD-NOS, High Functioning Autism, and related disorders.

RESOURCES:

General web sites:

http://www.autismeducation.net  The Autism Education Network is creating a collective voice for children with autism to help every one of them reach their full potential. Through the Network, families and professionals serving the autism community are working toward special education reform and striving to preserve the rights of children with autism to a free, appropriate, public education. By using technology and the Internet to streamline information, AEI empowers families and professionals serving the autism community to voice opinions and advocate change.

http://www.talkautism.org  Launched in 2002, TalkAutism is a communications network providing a value proposition for organizations, governments and companies to provide distance learning, professional outreach, bulletin-board discussions and databased information services to families and professionals dealing with autism.

http://www.firstsigns.org  First Signs, Inc., is a national non-profit organization dedicated to early identification and intervention of children with autism and other developmental disorders. Its mission is to ensure the best developmental outcome for every child by promoting awareness regarding the most important and often overlooked aspects of development: social, emotional, and communication.

http://www.aspergersyndrome.org  Informational and educational website about Asperger Syndrome sponsored by the Online Asperger Syndrome Information and Support (OASIS).

http://www.asperger.org  Website of the Asperger Syndrome Coalition of the U.S., a national nonprofit organization committed to providing up-to-date and comprehensive information on Asperger Syndrome and related conditions.

Web sites for parents:

http://www.autismweb.com  Billed as "a parents' guide to the diagnosis, treatment and education of children with autism, Pervasive Developmental Disorder (PDD) and related disorders," AutismWeb branches into separate areas about the definitions of each autism spectrum disorder, warning signs, education, diet, recommended readings, news, conferences, and how to find resources within your community.

http://www.autismone.org  Autism One is a nonprofit organization 501(c)(3) started by a small group of parents of children with autism to address three areas: education, advocacy, and fundraising.

Web sites for children:

http://www.kidshealth.org/kid/health_problems/brain/autism.html  Created by The Nemours Foundation's Center for Children's Health Media, KidsHealth provides families with accurate, up-to-date, and jargon-free health information they can use. KidsHealth has separate areas for kids, teens, and parents - each with its own design, age-appropriate content, and tone. There are literally thousands of in-depth features, articles, animations, games, and resources - all original and all developed by experts in the health of children and teens.

http://www.cdc.gov/ncbddd/kids/kautismpage.htm The Kids' Quests are designed for students in 4th, 5th, and 6th grades. Parents and teachers can modify the materials to meet students' learning styles and levels.  The Quests can be used in lessons about health, social studies, and tolerance in society.  Although students could do a Quest entirely on their own, we suggest that parents and teachers work with students to share ideas, talk about issues raised, and encourage students to reflect about themselves and others. 

http://www.cyh.com/SubDefault.aspx?p=255  Created by Child and Youth Health, this web site allows children ages 6 to 12 years old to research health topics such as autism and Asperger Syndrome.

Publications:

Autism Fact Sheet.  Autism fact sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).

NINDS Pervasive Developmental Disorders Information Page.  Pervasive Developmental Disorders (PDD) information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.

NINDS Asperger Syndrome Information Page.  Asperger Syndrome information prepared by the National Institute of Neurological Disorders and Stroke (NINDS).

Autism-Asperger Digest. Autism-Asperger Digest Magazine is a publication of Future Horizons, Inc., the world leader in publications and seminars for inspiring, teaching, and honoring achievements for persons with autism, Asperger Syndrome, & PDD. Featuring original articles and material from sources around the world, each 52-page issue of this magazine covers the latest people, products, research, news, and viewpoints emerging in the autism field. [http://www.autismdigest.com]

Journal of Autism and Developmental Disorders.This journal covers all the severe psychopathologies in childhood, including autism and childhood schizophrenia. Original articles discuss experimental studies on the biochemical, neurological, and genetic aspects of a particular disorder; the implications of normal development for deviant processes; and interaction between disordered behavior of individuals and social or group factors. The journal also features research and case studies involving the entire spectrum of interventions (including behavioral, biological, educational, and community aspects) and advances in the diagnosis and classification of disorders.

Autism and Genes. Research on autism spectrum disorders (ASDs), a group of disorders with a range of similar features related to communication and social interaction, shows that ASDs have one or more genetic components. This 12-page fact sheet explains what is known about ASDs and genes and describes some NICHD-supported research on this topic for parents and families. (Published by the National Institute of Child Health and Human Development). [http://www.nichd.nih.gov/publications/pubs/autism_genes_2005.pdf]

Visual Thinking of a Person with Autism. In this video, Dr. Temple Grandin describes the way she and many others with autism "think in pictures" and how to adjust for this specific learning style.                                   

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