Autism, Autistic Spectrum Disorders (ASD) and Pervasive Developmental Disorders (PDD)
What are the autistic spectrum disorders (ASD)?
Autism spectrum disorders, or ASD, are also called pervasive developmental disorders (PDD) because they involve delay in many areas of development. PDD or ASD is a category that includes five different disorders of development, each with differing severities and patterns:
- Autistic Disorder
- Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
- Asperger Syndrome
- Childhood Disintegrative Disorder (CDD)
- Rett Syndrome
For more information on ASD and PDD:
- What are Pervasive Developmental Disorders (PDD)? This fact sheet provides a brief overview and resource list.
- From the Center for Disease Control and Prevention (CDC): Frequently asked questions—general information about ASDs.
What is autism or autistic disorder?
Autism is the most common autism spectrum disorder. People with autism have differences in the development of their thinking, language, behavior and social skills. The differences appear before age three, and can be diagnosed by 18 months. For a diagnosis of autism, a child must have a specified number of symptoms in these areas:
- social interaction
- communication (including language delay)
- restricted range of behaviors, activities and interests (often called stereotypic behaviors)
If you think your child may have these traits, talk to your health care provider and find out how to have your child evaluated.
- The National Institute of Neurological Disorders and Stroke (NINDS) has an autism information page. (It's also in Spanish.)
- For teens: Autism
- For kids: Autism
What is Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)?
PDD-NOS, also called atypical autism or mild autism, means having differences in some of the same areas as in autism, only not to such a great extent. A child with PDD-NOS does not meet the criteria for any other specific PDD/ASD.
See YourChild: Rett Syndrome.
What is Asperger syndrome?
See YourChild: Asperger syndrome.
What is Childhood Disintegrative Disorder (CDD)?
See these resources:
- MedlinePlus: Childhood Disintegrative Disorder has basic information.
- NICHCY Connections to Childhood Disintegrative Disorder includes links to information on the disorder (also in Spanish), research and organizations.
- Yale Child Study Center Childhood Disintegrative Disorder
How common are the autism spectrum disorders?
The Center for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network released data in 2007 that found about 1 in 150 8-year-old children in the areas of the United States they monitor had an ASD1 For more on the numbers: Prevalence of ASDs, from the CDC.
Autism occurs throughout the world in families of all racial, ethnic and social backgrounds. Boys are four times more likely to have autism than girls2.
The MIND Institute in California found that the number of cases of autism is on the rise. This is probably a national trend.
What causes autism?
Current research suggests that differences in the development of the brain and central nervous system cause autism. What causes these differences in brain development is not known for sure. However, a variety of factors are being investigated. These include infectious, metabolic, genetic, and environmental factors. A 1995 National Institutes of Health (NIH) working group reached a consensus that autism probably results from a genetic susceptibility that involves multiple genes. To date, genetic causes for one disorder commonly accompanied by autism (Fragile X) and one autism-spectrum disorder (Rett syndrome) have been identified and genetic "hotspots" for autism have been found. NIH research on possible genetic, infectious, immunological, and environmental causes and mechanisms of autism continues.
- Find out more about the NIH autism research.
Do vaccines cause autism?
Research continues on vaccines and autism, and so far does not point to a connection between them. Here are some helpful resources from the American Academy of Pediatrics:
- The MIND Institute at the University of California Davis has issued a statement on Vaccines, Thimerosal and Other Potential Environmental Causes of Autism
- What Parents Should Know About Measles-Mumps-Rubella (MMR) Vaccine and Autism
- What Parents Should Know About Thimerosal
- MMR and autism resources
- Video: An interview with Jim Campbell, MD about vaccines, from the University of Maryland Medical Center. Dr. Campbell talks about vaccine safety at about 17:30 in the video.
How are autism spectrum disorders diagnosed?
Until recently, general pediatricians sometimes hesitated to screen for autism before age three. Parents often suspect a problem as early as 12 to 18 months. Go with your gut feeling, even if your pediatrician recommends you “wait and see.” Language and “hearing” concerns are the most usual first signs.
- If you have concerns about your child, please read this information from First Signs, especially the Red Flags.
If your child is not developing language or is losing language, seems not to “hear you" most of the time, or does not share interest in activities or objects with you, you should have your child evaluated by a specialist. Specialists can diagnose most children with ASDs by 18 months old - and the earlier the diagnosis, the sooner you can start treatment. Take your child to a developmental and behavioral pediatrician, pediatric psychiatrist, pediatric neurologist or pediatric psychologist. They are experts in diagnosing autism, and can help you figure out the best treatment plan.
An alternative to seeing a specialist is to go to your school system. Ask your state’s early intervention system or school system in writing for an evaluation of your child. They are required to provide it, at no cost to you. The purpose of an evaluation is to find out why your child is not meeting their developmental milestones. A team of professionals will work with you to evaluate your child. If they do not find a problem, and you continue to believe there is a problem, you can ask the school system to pay for an Independent Educational Evaluation (IEE). There are strict rules about this, and they may not agree with your request. You can also choose to have your child tested again privately, and pay for it yourself. But check with your school district first to make sure they will accept the private test results. By law, the school system must consider the results of the second evaluation when deciding if your child qualifies for special services.
- Tips for your child's developmental assessment, from Zero to Three, is a guide for parents who are concerned about their baby's, toddler's or preschooler's development and learning. It will help you prepare for an evaluation, and know what to expect.
- Basics for Parents: Your Child’s Evaluation explains what parents of school-aged kids need to know about the evaluation process.
What treatments are there for autism?
There is no single best treatment for all children with ASD. The most important point is to start treatment as early and intensively as possible!
If you are concerned about your child's development, check out First Signs, a website with information and resources for early identification and intervention for children with developmental delays and disorders.
There is no cure for autism, but early and intensive treatment can help children with autism improve their behavior, communication and social skills. Treatment may include support and facilitation, behavior modification, educational therapy, and medicine.
Every state has an early intervention program and you will want to get your child enrolled as soon as possible. If you live in Michigan, your doctor may refer you to the Early On Program in your local school district. (Outside Michigan, you can find your state's early intervention services through the NICHCY website.) Early On (and all states' early intervention programs) offer many different services and will help set up an individualized program for your family. It is called an Individual Family Service Plan (IFSB).
- Read all about finding help for babies, toddlers, and preschoolers. ["Finding Help for Young Children with Disabilities (Birth-5)"]. You can get this information in plain text, PDF, or in Spanish.
It is most important to start treatment as early as possible, and make sure it involves intensive, one-on-one interaction with your child.
The National Research Council's Committee on Educational Interventions for Children with Autism has published Educating Children with Autism. It is a comprehensive report from a committee of experts from many different fields who reviewed current research and policy. They have created a "map" to guide the education of young children (birth to age eight) with autistic spectrum disorders. A section entitled "Characteristics of Effective Interventions," on page 6 of the Executive Summary of the report, states3
"The consensus across programs is generally strong concerning the need for: early entry into an intervention program; active engagement in intensive instructional programming for the equivalent of a full school day, including services that may be offered in different sites, for a minimum of 5 days a week with full-year programming; use of planned teaching opportunities, organized around relatively brief periods of time for the youngest children (e.g. 15- to 20-minute intervals); sufficient amounts of adult attention in one-to-one or very small group instruction to meet individualized goals. Overall, effective programs are more similar than different in terms of levels of organization, staffing, ongoing monitoring, and the use of certain techniques, such as discrete trial, incidental learning, and structured teaching periods. However, there are real differences in philosophy and practice that provide a range of alternatives for parents and school systems."
You can go online to read the full report from the National Academy Commission on Behavioral and Social Sciences and Education, Educating Children with Autism.
Before you make decisions regarding your child’s treatment, gather information and learn as much as you can about treatment programs in your area. Base your decision upon your child’s needs. The National Institute of Mental Health offers a list of questions parents can ask when making these important decisions.
What kinds of intensive, interaction-based therapies are available?
While we do not endorse any particular interaction-based treatment program, we want you to be aware of some of the options. Some of the treatment programs that focus on working intensively and one-on-one with children are:
- Applied Behavior Analysis (ABA)
ABA is a broad set of principles and guidelines that is often used as a framework for treating autism. ABA is a one-on-one, intensive, structured teaching program based on the ideas of behavior modification and involving reinforced practice of different skills. You may also hear it called Discrete Trial Therapy (or DTT). Other terms associated with ABA are: functional communication training, incidental teaching, script/script fading, self-management, shaping, behavior chaining, errorless learning, functional assessment, reinforcement systems and activity schedules. Each word in the name “Applied Behavior Analysis” is important: - “Applied” means that you are trying cause positive change in socially significant behaviors.
- “Behavior” changes over time are observed and measured.
- “Analysis” refers to the way the evidence is collected and evaluated to show how an intervention caused a behavior change.
- Lovaas Therapy
The Lovaas Model of Applied Behavior Analysis is a specific ABA treatment method developed by Ivar Lovaas. For more information, visit his website. - Developmental, Individual-Difference, Relationship-Based (DIR) Therapy
DIR—also called Floortime or the Greenspan Method—is based more on relationships than behavior modification. The Interdisciplinary Council on Developmental and Learning Disorders (founded by Stanley Greenspan) has information about the DIR/Floortime model. You can also visit The Floortime Foundation to learn more. - Augmentative and Alternative Communication (AAC)
This augmentative communication glossary will help you learn the terms. AAC can use strategies like the Picture Exchange Communication System (PECS) and sign language.
What about alternative treatments?
You may hear about new or alternative treatments that people are talking about. You may also read online about treatments that claim to “cure” autism. Before starting your child on one of these, talk about it with your child's doctor or health care provider. Many "treatments" that are marketed to parents of children with autism are very expensive, may harm you child, and are not based on sound research. Beware of treatments that claim to have a miracle "cure" for autism.
Do not let alternative or complementary treatments infringe in any way on intensive, behaviorally structured treatment programs, such as those described in the section above. We know beyond a doubt that intensive, active engagement in a therapeutic program helps young children on the autism spectrum develop skills.
- Take a look at these red flags and rules of thumb for evaluating treatments.
- Read the American Academy of Pediatrics Policy Statement on Auditory Integration Training (AIT) and Facilitated Communication (FC)
- The Association for Science in Autism Treatment offers brief research summaries for both widely-accepted and “alternative” therapies.
What is special education?
Special education means “educational programming designed specifically for the individual.” If your school-aged child qualifies for special education, they will have an Individualized Education Program (IEP) designed just for them.
- Here is a helpful overview of the special education process.
- Find out all about the process on this comprehensive page from the US Department of Education. You can also download the information in Word or PDF format.
- Find out how to help create a useful IEP for your child.
- Help your child take part in making their own IEP with these two resources from NICHCY: A Student’s Guide to the IEP and Helping Students Develop Their IEP.
- Empower yourself to be a great advocate for your child at IEP meetings. Use this Pop-Up IEP from Hands and Voices, (a support group for families of children who are deaf or hard of hearing) to find out some of the common hurdles that may surface during the meeting and how to deal with them. Some of the pop-ups apply more to kids with deafness/hard-of-hearing, but most will be helpful.
- The team of people helping your child may include many different kinds of teachers, therapists and paraprofessionals. Here are descriptions of some of the different kinds of service providers who may work with your child.
- Pass this on to your child’s teacher: Teaching Students with Autism
What happens as my child grows up into an adult?
Transition planning is planning to prepare your child to lead a rewarding life as an adult. As your child gets closer to adulthood, they will need an IEP transition plan. Transition planning begins at age 14. It is part of the IEP every year after that. At age 16, planning will begin for how your child will transition from school into the community. The goal is for your child to become as independent as possible. Your child should take part in the planning, because their input will help make the plan more successful. For a thorough discussion (28 pages when printed) of the transition plan, see Transition Planning: A Team Effort , from NICHCY. For resources on youth with intellectual disabilities attending college, visit the ThinkCollege website.
What do I need to know about the laws that have to do with early intervention and special education? What are our rights?
- Find out your rights, as a parent, in the special education process.
- Questions and Answers about IDEA (the Individuals with Disabilities Education Act). This is also available in PDF, and Spanish.
- Internet Legal Resources about Special Education and Disabilities-from the University of Virginia.
What are some tips for parenting kids with autism?
Pay attention to your child's environment and routine:
- Keep the environment predictable and familiar, and prepare your child for changes. For example, count down the time until a transition.
- Prime your child for new situations by explaining in advance what you expect will happen, and prepare them for the “what if’s.” For example, explain you are going to visit grandpa, but “what if” grandpa doesn’t answer the door.
- Provide consistent structure and routine.
- Many children respond well to visual supports, such as a daily schedule using pictures. Schedules help to give information about what is happening in the day and give a place for the child to check when needed (just like you might check your planner or shopping list).
- Pay attention to sensory input from the environment, like noise, temperature, smells, crowds, etc.
When you talk to your child:
- Don’t assume that your child understands what you are saying.
- Communicate clearly. Be logical, organized, clear, concise and concrete. Avoid jargon, double meanings, sarcasm, nicknames, and teasing.
- Explain abstract concepts in concrete terms.
- Don't talk about your child in front of them, unless you include them in the conversation.
- Be sure to tell your child what you want him to do, rather than what you don’t want him to do. For example, say “put it on the table” rather than, “don’t throw it on the floor.”
To help your child improve their behavior:
- Help your child learn to communicate using gestures, sign language, picture boards, communication devices, and/or speech. Work on communication early, and be consistent to help your child improve more. Better communication will help relieve frustration and may lead to better behavior.
- Teach your child to make choices.
- Be consistent in rewarding positive behavior.
- Replace the unwanted behavior with a favorite activity. In other words, use distraction.
- Choose rewards you know your child will like.
Always remember to show love and caring for your child.
My child was just diagnosed. Where do we start?
- Get your child in an early intervention program right away. Every state has one. Start by calling your local school district. For help locating your state's early intervention or special education program, visit NICHCY (National Information Center for Children and Youth with Disabilities), and go to your state's list of resources or call them at 1-800-695-0285.
- Begin an intensive behavioral program right away. This could be an ABA or "Floortime" - type program.
- Make sure your child's therapy includes teaching communication and social skills.
- Include occupational therapy as well, especially if your child has sensory integration (SI) issues.
- Your child's specialist doctor may prescribe medication to help with certain behaviors/symptoms.
- Using diet and vitamins or other alternative therapies are not helpful in the majority of cases. Use your time and money on a proven treatment: intensive, one-on-one behavioral therapy.
Other good starting points for parents of a newly diagnosed child:
- The Yale Child Study center has answers to frequently asked questions.
- Autism Speaks offers a comprehensive book called the First 100 Days Kit—a tool to assist families in getting the critical information they need in the first 100 days after an autism diagnosis. It has information about autism, how it will affect your family, getting services for your child, and different treatments. It also includes a week-by-week “map” of the first 100 days, including places for notes and important things to do and remember.
How can I get more information, help and support?
Related topics on YourChild:
- Asperger Syndrome
- Rett Syndrome
- Non-verbal Learning Disability
- Developmental Milestones
- Developmental Delay
- Siblings of Kids with Special Needs
- Special Feature-In the News: Autism Increase
Additional Information:
- The National Institutes of Health has a pamphlet on autism. It also comes in Spanish. The pamphlet includes a list of resources at the end.
- Watch: 2008 Autism News Stories from ABC News
- Clinical Practice Guideline for Autism/Pervasive Developmental Disorders: Assessment and Intervention for Young Children (Age 0-3 Years) from the New York State Department of Health Early Intervention Program.
- The American Academy of Pediatrics (AAP) policy statement on The Pediatrician’s Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children.
- AAP clinical report: Identification and Evaluation of Children with Autism Spectrum Disorders
- AAP clinical report: Management of Children with Autism Spectrum Disorders
Books:
- Engaging Autism: Helping Children Relate, Communicate and Think with the DIR Floortime Approach, by Stanley Greenspan and Serena Weider.
An introduction to DIR/Floortime with useful advice, examples and case studies, and good background information on autism spectrum disorders.
- Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD by Steven Gutstein and Rachelle Sheely.
An objectives-based program for parents, teachers, special educators and therapists to use with children ages two to eight.
- Super Skills: A Social Skills Group Program for Children with Asperger Syndrome, High-Functioning Autism and Related Challenges, by Judith Coucouvanis.
“Thirty lessons grouped under four types of skills necessary for social success: fundamental skills, social initiation skills, getting along with others, and social response skills. Each lesson is highly structured and organized, making it easy for even inexperienced teachers and other group leaders to follow and implement successfully. A series of practical checklists and other instruments provide a solid foundation for assessing students' social skills levels and subsequent planning.”
- The Potty Journey: Guide to Toilet Training Children with Special Needs, Including Autism and Related Disorders, by Judith Coucouvanis.
A no-nonsense, often humorous approach, with strategies that have produced results for parents of children with autism and related disorders nationwide. Promising no "quick fixes," The Potty Journey systematically guides you through the entire toileting journey, step-by-step, to the ultimate destination - dry pants.
- 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, by Veronica Zysk and Ellen Notbohm.
Includes chapters on sensory, communication, behavior, daily living skills, social skills, education and legal issues. Practical and immediate ideas, tips and activities you can use right away.
- Initiations and Interactions: Early Intervention Techniques for Children with Autism Spectrum Disorders, by Teresa A. Cardon
- Pivotal Response Treatments for Autism: Communication, social, and Academic Development, edited by Robert l. Koegel and Lynn Kern Koegel
- Teaching Young children with Autistic Spectrum Disorders to Learn: A Practical Guide for Parents and Staff in Mainstream Classrooms and Nurseries, by Liz Hannah
- Hopes and Dreams: An IEP Guide for Parents of Children with Autism Spectrum disorders, by Kirby Lentz
- Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals, by Bryna Siegel
- Peer Play and the Autism Spectrum: The Art of Guiding Children’s Socialization and Imagination, by Pamela J. Wolfberg
- Do-Watch-Listen-Say: Social and Communication Intervention for Children with Autism, by Kathleen Ann Quill
- The Out-of-Sync Child: Recognizing and Coping with Sensory Processing disorder, Revised Edition, by Carol Stock Kranowitz
- Taking the Mystery Out of Medications in Autism/Asperger Syndromes, by Luke Tsai, M.D.
- For more books, check out this resource list, and this great annotated list of children's books, many of which are especially helpful for siblings, relatives, classmates and friends of kids on the spectrum.
Resources:
- NICHCY (National Information Center for Children and Youth with Disabilities, now called the National Dissemination Center for Children with Disabilities) provides information and makes referrals in areas related to: early intervention, special education and related services, individualized education programs (IEPs), family issues, disability organizations, professional associations, education rights, transition to adult life, and more. They can provide personal answers to your questions, fact sheets, state resource sheets, parent guides, reading lists, and referrals to other organizations. Materials are also available in Spanish. Call toll-free 1-800-695-0285
- Early On Michigan is the state of Michigan’s early intervention service. Call 1-800-EARLY-ON. If you live outside Michigan, NICHCY can help you find your own state’s early intervention service.
- The University of Michigan Autism and Related Communication Disorders Center (UMACC) is committed to integrating research, training, and clinical service. The Center conducts research designed to advance knowledge of autism and train future researchers and clinicians. They offer complete diagnostic evaluations, intervention, and consultation to schools, therapists, and other professionals, as well as training and resources to families and professionals working with children with autism. To request an evaluation at UMACC, visit the clinical services page or call 734-936-8600.
- The University of Michigan Psychiatry Department Autistic Spectrum Disorders Clinic provides diagnosis and treatment to children and adolescents with autistic spectrum disorders (ASD). The clinic sometimes offers adult evaluations. Call 734-764-0231.
- The National Institute of Child Health and Human Development (NICHD) has an autism topics page that links to their resources.
- The Yale Child Study Center's Developmental Disabilities Clinic has lots of information on PDDs, including autism, Asperger syndrome, Rett disorder, and childhood disintegrative disorder.
- Autism web resources from the AAP National Center of Medical Home Initiatives for Children with Special Needs
- The Family Support Subsidy Program from the Michigan Department of Community Health can provide money for special expenses for caring for a child with severe disabilities. Call 517-335-3573 for more information.
- Project Find can help you figure out whether your child (from birth to age 26) qualifies for special education services in Michigan. Call 1-800-252-0052.
- Zero to Three is the nation's leading resource on the first three years of life, with a mission to strengthen and support families, practitioners and communities to promote the healthy development of babies and toddlers.
- Exceptional Parent Magazine - provides information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them.
- Selected list of videos from the Indiana Resource Center for Autism.
Organizations:
- Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
- The Association for Science in Autism Treatment works toward adopting evidence-based standards of accountability for the care, education and treatment of all individuals with autism.
- Autism Collaboration and the A+ Research Initiative brings together autism advocacy organizations and seeks to promote a more parent-driven research agenda.
- The Organization for Autism Research focuses on applied research.
- The Autism Society of America (ASA) works to increase public awareness about autism and the day-to-day issues faced by people with autism and their families. They provide information and education, support research and advocate for programs and services for the autism population. The ASA has state and local chapters. Call toll-free 1-800-328-8476.
- The Autism Society of Michigan: 1-800-223-6722.
- The Autism National Committee strives to protect and advance the human rights and civil rights of all persons with autism, PDD, and related differences of communication and behavior. Their website contains information on politics and legal issues, early intervention and education, community living issues, and advocacy.
- Autism National Committee
635 Ardmore Avenue Ardmore, PA 19003-1831 - The National Autism Association seeks 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. NAA takes holds the view that autism is not a lifelong incurable genetic disorder but rather biomedically definable and treatable.
- Division TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) at the University of North Carolina at Chapel Hill has information about autism, Asperger syndrome, and educational and communication approaches.
- Parents of Autistic Children is a New Jersey-based organization of parents that provides service to the autism community. Their website offers an on-line distance-learning lecture on Applied Behavior Analysis (ABA) and verbal learning.
- TASH is a worldwide organization that works for inclusion of all people in all aspects of society. Call 410-828-8274.
- Council for Exceptional Children is a professional organization that provides publications for educators, and can provide referral to ERIC (Educational Resource Information Center Clearinghouse on disabilities and gifted education). Call 1-703-620-3660.
- NAPSEC(National Association of Private Schools for Exceptional Children) provides referrals for private special education programs. Call 1-202-408-3338.
Written and compiled by Kyla Boyse, R.N. Reviewed by Judith Coucouvanis, MA, APRN, BC.
Updated December 2008
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