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Autism, Autism Spectrum Disorder (ASD), Pervasive Developmental Disorder (PDD), Asperger Syndrome (AS)
FAQs l Articles l Caselaw l Books l Resources l Organizations
Explaining Autism to Children

We receive many questions from parents, teachers, and health care providers about special education services for children with autism. If you are a parent, you need to educate yourself about your child's disability, effective educational methods and medical treatments, and how to present your child's problems and needs to school staff so they want to help.

On the Autism, PDD & Asperger Syndrome page, you will find FAQs, articles, legal resources, recommended books, free publications, and a short list of information and support groups.

The Centers for Disease Control and Prevention (CDC) has opened the Autism Information Center. You can find out exactly what Autism and other Pervasive Developmental Disorders (PDD) are on this website.

What is Autism?
Autism is a neurological disorder that can impair communication, socialization and behavior. It is usually diagnosed within the first three years of life and is four times more common in boys than in girls. However, some types of Autism may not be diagnosed until years later when the child enters school, due to late-occurring social deficits or difficulty playing with others. When this occurs, the child is usually too old to take advantage of early childhood intervention services and is evaluated for entry into the special education system.

Though awareness and understanding have greatly increased over the past few decades, many people are still unaware of the true affect of Autism. It can become an overshadowing factor in every aspect of life, including education, establishing and maintaining relationships, responding to pain and discomfort, and even in the ability to express emotion.

Symptom severity in Autism can range from mild to severe. For example, one child may intensely flap their arms to show excitement, another may display a smile under the same set of circumstances, while another child may sit in the corner and rock, leading the observer to believe that they may be incapable of showing or feeling emotion.

As parents reach the diagnosis, treatment and education stages of Autism, they will hear many different terms used to describe their child. This may include words such as autistic-like, non-verbal, developmentally delayed, autistic tendencies, savant, high-functioning, and low-functioning. The important thing to realize is that all children with Autism are different. What works for one may have zero effect on another. The combinations of signs and symptoms are endless. More important than the words used to describe the child is the underlying understanding that whatever the diagnosis is, children with Autism are able to learn, function productively in society and show positive gains with appropriate education and treatment plans in place. Without appropriate support, the child may never realize his full potential. (Source)

According to the National Academy of Sciences, "the diagnosis of autism can be made reliably in two-year-olds by professionals experienced in the diagnostic assessment of young children" with autistic disorders. Early diagnosis is crucial because education is the primary form of treatment, and the earlier it starts, the better." Autism and PDD: Fact Sheet.

Clarification of Medicaid Coverage of Services to Children with Autism. Informational Bulletin (July 2014) from the Department of Health and Human Services, Centers for Medicare & Medicaid Services, (CMS).

OSEP Dear Colleague Letter, 07/06/15, addresses concerns about speech-language services for children with autism spectrum disorder (ASD), clarifying requirements of the IDEA related to the provision of services for children with disabilities, including children with ASD [including infants and toddlers in Part C with IFSPs]. Clarification of OSEP's concern that SLPs and other appropriate profesionals may not be included in evaluation and eligibility determinations.

Note: Diagnostic and Statistical Manual of Mental Disorders (DSM-5) 2013 changes diagnosis of autism spectrum disorder (ASD).

Using DSM-IV, patients could be diagnosed with four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental disorder not otherwise specified. Researchers found that these separate diagnoses were not consistently applied across different clinics and treatment centers. Anyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis. While DSM does not outline recommended treatment and services for mental disorders, determining an accurate diagnosis is a first step for a clinician in defining a treatment plan for a patient.

DSM-V Diagnostic Criteria. Full-text of the diagnostic criteria for autism spectrum disorder (ASD) and the related diagnosis of social communication disorder (SCD), as they appear in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

Updated 2011 NIMH Parent's Guide to Autism Spectrum Disorders. This comprehensive document from the National Institute of Mental Health is designed to help parents understand the different types of autism spectrum disorders, the diagnosis process, treatment options and available resources.

What is Asperger's Syndrome?
Asperger Syndrome (AS) is a severe developmental disorder characterized by major difficulties in social interaction, and restricted and unusual patterns of interest and behavior. There are many similarities with autism without mental retardation (or "Higher Functioning Autism"). (see Resources: Asperger's Syndrome; information & support).

High Functioning Autism (HFA) and Austism Spectrum Disorders (ASDs) Asperger syndrome (AS) is a neurobiological disorder, which most researchers feel falls at the "high end" of the autistic spectrum. Individuals with Asperger syndrome can have symptoms ranging from mild to severe. While sharing many of the same characteristics as Pervasive Developmental Disorder, Not Otherwise Specified and High-Functioning Autism, Asperger syndrome is a relatively new term in the United States, having only recently being officially recognized as a diagnosis by the medical community.

Pervasive Developmental Disorder (PDD) and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS)
Note: Diagnostic and Statistical Manual of Mental Disorders (DSM-5) 2013 changes dianosis of autism spectrum disorder (ASD).

Using DSM-IV, patients could be diagnosed with four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental dis-order not otherwise specified. Researchers found that these separate diagnoses were not consistently applied across different clinics and treatment centers. Anyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis.

The diagnostic category of pervasive developmental disorders (PDD) previously referred to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before 3 years of age. Symptoms may include problems with 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, and repetitive body movements or behavior patterns.

Intensive Early Intervention
All available research strongly suggests that intensive early intervention makes a critical difference to children with autistic spectrum disorders. Without early identification and diagnosis, children with autism are unlikely to learn the skills they need to benefit from education.

Distinct Developmental Patterns Identified in Children with Autism During their First Three Years (2012) published in the journal Child Development, found that early in development, children who display early signs of ASD show greater initial delay across multiple aspects of development compared to children whose ASD symptoms emerge later.

From First Concern to Diagnosis and Beyond (2010) published in the IAN Research Report #13. The gap between the time parents began to worry and the time they got a formal diagnosis was often lengthy -- a real problem when early intervention is so crucial. The nation's largest online autism research project, Interactive Autism Network Research Reports.

The National Research Council analyzed intervention models for young children with autistic disorders and concluded that intensive early intervention "makes a clinically significant difference for many children. Children who had early intervention had better outcomes. (See Current Interventions in Autism: A Brief Analysis)

Act Early: Milestone Tracker.From bith to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child's development with this CDC Milestone Tracker App and act early if you have a concern.

The M-CHAT screening for Autism Spectrum Disorders in toddlers (i.e., over the age of 12 months, and ideally over the age of 18 months). A parent can complete the free screening for autism online prior to meeting with a health-care professional. It is scored instantly and once completed provides a print out of the results for parents to take into your pediatrician's office.

Early Intervention for Toddlers with Autism Highly Effective. (2009) The study, published online in the journal Pediatrics, examined an intervention called the Early Start Denver Model, which combines applied behavioral analysis (ABA) teaching methods with developmental 'relationship-based' approaches. Study finds significant gains in IQ, communication and social interaction.

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Articles
Here are links to articles about educating children with autism. For additional articles, please visit the Advocacy Library.

Schools Warned On Speech Services For Kids With Autism. U.S. DOE concerned that an increasing number of kids on the spectrum may not be receiving services from speech-language pathologists at school and these professionals are frequently left out of the evaluation process and not present at meetings to determine what services a child should receive under IDEA.

Autism Speaks 100 Day Kit. (2014) Specifically for newly diagnosed families, to make the best possible use of the 100 days following the diagnosis of autism. The kit contains information and advice collected from trusted and respected experts on autism as well as from parents of children with autism. There is a week by week plan for the next 100 days, as well as organizational suggestions and forms that parents/caregivers can use to help with the paperwork and phone calls, as they begin to find services for their child. Newly diagnosed families (within six months of diagnosis) can order a kit which will contain personalized information specific to the child's age and location.

Autistic Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment. (2013) This publication provides professionals, policymakers, parents and others with "best practice" recommendations and rationale for screening, evaluating and assessing individuals suspected of having autistic spectrum disorders. These guidelines are the product of nearly a year's work by experts in the field of autistic spectrum disorders and are based on validated scientific evidence, clinical experience and clinical judgment.

Preventing Challenging Behaviors in Young Children. The single best way to address challengin behaviors in young children today is to take steps that they never occur.

Anatomy of a Special Education Case. Stefan Jaynes has autism. His parents implemented an intensive ABA/ Lovaas program. This article tells the story of Stefan's case, from the due process hearing to the final decision from the U. S. Court of Appeals for Fourth Circuit. Includes links to pleadings and decisions.

Analysis of Deal v. Hamilton Co. Bd. Educ. by Gary Mayerson, Esq. Attorney for family discusses case, costs when school districts cling to outmoded programs and fight to retain the status quo.


Analysis of Bucks Co Dept of Mental Health v. De Mora by Gary Mayerson, Esq. In Bucks County, the Federal District Court (E.D. PA) held that a parent may be compensated by the school district for providing ABA services. This appears to be the first time any federal court has made such a ruling.

Analysis of Henrico County School Board v. R.T. by Pete Wright, you learn about the Burden of Proof and Burden of Persuasion after the U. S. Supreme Court ruling in Schaffer v. Weast and the comprehensive analysis of ABA v. TEACCH. The decision includes a discussion of the balance between FAPE and LRE and describes what deference, if any, should be provided to school board programs and testimony of school board witnesses.

Injunction Issued on Behalf of Child with Autism. Federal Judge issues injunction in ADA case; orders day care center to readmit child with autism and train staff.

Ninth Circuit Issues New Decision in ABA/Lovaas Case. Pete Wright's analysis of Amanda J. v. Clark County School District and Nevada Dept of Education.

Play Hearts, Not Poker by Jennifer Bollero, Esq. Attorney and mother of child with autism writes that parents who learn the rules and strategies will reduce the risks when they negotiate for their children. "Your child's IEP should never be a gamble. Know what your goals are and work them. Many roads lead to the same place. Many different cards can win the game." Includes 8 Steps to Better IEP Meetings.


TEACCH v. ABA Debate. Pete answers questions about methods used to educate young children with autism.

$133,000 Settlement to Parents of Young Child with Autism. Describes issues in ABA/Lovaas case; child regressed in public school program, made impressive gains in intensive ABA / Lovaas program.

Learning to Live With Autism: Discovery & Diagnosis (PDF). In this article, you will discover the basics of Autism. What is Autism? What are the signs? How is Autism diagnosed? Could we have prevented this? These are just a few of the burning questions that are discussed. Resources are provided at the end of each section so that you can find more in-depth information on each topic.

Learning to Live With Autism: Lessons Learned & Advice for Newly Diagnosed Families (PDF). In this article, Jackie D. Igafo-Te’o provides advice for families and shares research options for education and resources on topics from "How to cherish the good times and preserve positive memories" to "planning for the future".

Children with Autism: Special Education. (2005) The Government Accountability Office published this report to answers questions submitted by Congress about special education for children with autism.

Judging Autism. (2006) Parents of autistic children win two important lawsuits against local school systems. Is Virginia ready for the fallout?

Autism Therapy is Effective, but Rare by Laurie Tarkan, New York Times. (2002) Describes problems parents face in getting appropriate services for their children with autism, including the failure to use effective methods to teach these children. "A vast majority of children with autism are not getting the intensive early intervention that experts say is both essential and effective."

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Caselaw
Here are links to several important decisions about educating children with autism from our caselaw section. For more cases, please visit the Law Library.

Free Appropriate Education, ABA/Lovaas Cases

Amanda C. v. Clark County Sch. Dist. and Nevada Dept of Educ. (9th Cir. 2001) Court of Appeals reinstates hearing officer's decision; cites school employees for failure to inform parents of rights; procedural safeguards violations.

Deal v. Hamilton County TN Board of Ed (6th Cir. 2004) Court of Appeals found that school predetermined child's placement with "unofficial policy" of refusing to provide one-on-one ABA Lovaas programs; procedural violations can cause substantive harm; that "the approach offered by the School System provides little or no chance of self-sufficiency for an autistic child while, under the Lovaas approach, self-sufficiency is a real possibility;" that while schools are not required to "maximize" child's potential, "there is a point at which the difference in outcomes between two methods can be so great that provision of the lesser program could amount to denial of a FAPE."

Deal v. Hamilton Dept of Educ (TN Due Process Decision Aug 2001) Administrative law judge issues 45 page decision after a 27-day due process hearing; finds procedural safeguards and LRE violations; substantive violations; discusses credibility problems with school witnesses re: closed minds, evasiveness. (Appealed; overturned by U. S. District Court; appealed; U. S. District Court decision overturned by Court of Appeals for Sixth Circuit)

G. v. Fort Bragg Dependent Schools (4th Cir. 2003). ABA/Lovaas case; rights of children who attend Dept of Defense schools; FAPE & educational benefit; methodology; reimbursement for home-based Lovaas program; procedural safeguards and notice by parents; compensatory education for failure to provide FAPE; prevailing party status & attorneys fees (pdf)

School Bd of Henrico County VA v. R T, (E.D. VA 2006). Comprehensive decision about school district's repeated failure to provide an appropriate program to young autistic child; tuition reimbursement for private school that employs ABA approach. Includes lengthy discussion of autism, ABA v. TEACCH models; burden of proof; FAPE and LRE; IEP goals; measurable progress; what deference should be provided to school board programs and testimony of school board witnesses. Slams school board's "inertia," low expectations, and failure to use proven methods of teaching and learning for children with disabilities.

School Bd of Henrico County VA v. Z.P (4th Cir. 2005) Parents of young child with autism rejected typical generic preschool program and requested tuition reimbursement for private program that utilizes one-on-one ABA therapy. Issues include deference to hearing officer as factfinder and deference to opinions of professional public school educators.

L.B. and J.B. ex rel. K.B. v. Nebo UT Sch. District (10th Cir. 2004). Parents of child with autism reimbursed for ABA/Lovaas therapy and private preschool that was LRE for child; educational benefit; impartiality of hearing officer.

Stefan Jaynes v. Newport News (4th Cir. 2001). ABA/Lovaas case; parents to be reimbursed for expenses of ABA / Lovaas program.

Stefan Jaynes v. Newport News (E.D. VA 2000) ABA/Lovaas case (in pdf). ABA/ Lovaas case; school fails to provide appropriate program; judge orders school to reimburse parents more than 100K.

Michael v. Kanawaha (S.D. WVA 2000) ABA/Lovaas case (in pdf). One of Pete's favorite cases, includes excellent discussion of IEPs. See also Order in Michael v. Kanawaha

Mr. X v. New York (S.D. NY 1997). Early ABA Lovaas case; discusses autism, components of effective educational programs for children with autism.

T. H. v. Bd. Ed. Palatine IL (N. D. IL 1999). Powerful well-written decision in ABA-Lovaas case; discusses methodology, IEP development process; IEP goals and objectives, individualization, educational benefit, unilateral placement by parents, reimbursement, standard of review. (pdf)

Independent Sch. Dist. No. 318 (MN SEA 1996). Early ABA-Lovaas case; child represented by Sonja Kerr.

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Extended School Year, LRE/Inclusion, Other Issues

Mark Hartmann v. Loudoun County Sch. Bd. (4th Cir. 1997) LRE/Inclusion case on behalf of child with autism.

Daniel Lawyer v. Chesterfield (E.D. VA 1993). ESY for child with autism; child represented by Pete Wright.

Reusch v. Fountain (MD 1994) Case on behalf of child with autism re: ESY; factors that must be considered by IEP team in making decisions about ESY.

Asbury v. Special Sch. Dist. of St. Louis. Case on behalf of young child with autism; child regressed in district's preschool program, made gains in ABA/Lovaas program. News Release and Settlement Agreement

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Resources: Autism, PDD, Asperger's Syndrome

Transition to Adulthood Guidelines for Individuals with ASD has been revised and formatted into a series of free web–based booklets from OCALI. Each booklet focuses on one aspect of the transition from school to adult life.

  • IEP Components of the Transition Process
  • Considerations for School Programming
  • Age-Appropriate Transition Assessment
  • Employment

Navigating College Handbook. (2013) From the Autistic Self-Advocacy Network -An introduction to the college experience from those who’ve been there. The writers and contributors are Autistic adults, and who give you the advice that we wish someone could have given us when we headed off to college. We wish we could sit down and have a chat with each of you, to share our experiences and answer your questions. Free download.

National Standards Report, the most extensive analysis of treatments for children and adolescents with ASD ever published from the National Autism Center. Completed in 2009, the National Standards Project is an unprecedented multi-year project to establish a set of standards for effective, research-validated educational and behavioral interventions for children on the spectrum. Phase 2 (2015).

Evidence-Based Practice and Autism in the Schools Educator Manual from the National Autism Center (2010). The manual outlines the current state of research findings, professional judgment and data-based clinical decision making, values and preferences of families, and capacity building. Each chapter sets a course for advancing the efforts of school systems to engage in evidence-based practice for their students on the autism spectrum. Free download (pdf) or order print copy ($24.95)

CDC Milestones Checklist. This interactive tool allows you to view how a developmental milestone category (social and emotional, cognitive, or language) changes as a child grows.  Learn the signs: Act Early.

Points of Light. Move the slider, to ascribe human characteristics to 15 moving points of light. What does the child with autism see? Normal young children look at another child’s eyes when talking, but those with autism look at the mouth. The normal child will be able to tell you the sex and what is going on, the child with autism will simply see points of light.

This Points of Light link and the M-CHAT screening for Autism Spectrum Disorders were shared by John W. Harrington, MD, Associate Professor of Pediatrics, Eastern Virginia Medical School, Director of General Academic Pediatrics, Children's Hospital of The King's Daughters at the Macklin Symposium on "Autism and the Military Child" hosted by Pediatrics/Neurodevelopmental Pediatrics, Naval Medical Center Portsmouth, VA, September 2011.

Autism Speaks School Community Tool Kit. The purpose of this kit is to provide information about autism – the features, challenges and strengths -- as well as some of the tools and strategies that may result in more positive interactions for all members of a school community. This tool kit is not intended to be a curriculum for special education for students on the autism spectrum, but rather a support for the general education and administrative school staff who interact with students with autism in various capacities. However, it is envisioned that this tool kit will provide valuable information and resources that can be employed by special education and administrative staff in their efforts to plan for and support students in general education environments and involvement in the school community as a whole.

Click here for a PDF of the School Community Tool Kit

Collection on Autism Spectrum Disorder. IDEA Partnership's comprehensive collection of materials includes a PowerPoint Presentation along with a Presenter Guide, numerous resources and recommended handouts, and Dialogue Guides to assist you in furthering understanding of ASD.

Free Online Course from the Autism Society of America: Autism 101. The online course will take approximately 30 minutes to complete. The course covers the following areas: Introduction to Autism Spectrum Disorder, Treatment Options, Treatment Assistance, Transition to Adulthood, and More Information and Resources. At the end of the course you will be able to download a certificate of completion. You must first register to take this free course.

Guide for Educators on ASD: The Puzzle of Autism (PDF). The National Education Association (NEA) published a free, downloadable 96-page summary of how K-12 educators might think differently about students with autism, capitalize on their strengths, provide supports to address their challenges, and facilitate positive social relationships among students with and without autism.

Next Steps: A Guide For Families New To Autism (PDF). This 8-page brochure will provide the reader with a general understanding of Autism Spectrum Disorders, an overview of the various treatment options, and brief information about education and services that are helpful to children and adults with autism.

Asperger's Syndrome - Guidelines for Assessment and Diagnosis by Ami Klin, Ph.D., and Fred R. Volkmar, M.D., Yale Child Study Center.

Asperger's Syndrome: Guidelines for Treatment and Intervention. In this article, written by by Ami Klin, Ph.D. and Fred R. Volkmar, M.D. the from Yale Child Study Center, many topics are discussed including: Securing and Implementing Services, General Intervention Setting, General Intervention Strategies, General Strategies for Communication Intervention and Social Skills Training, General Guidelines for Behavior Management, Academic Curriculum, Vocational Training, Self-Support, Pharmacotherapy, and Psychotherapy. This is an older article but it contains a lot of useful information that is currently relevant.

Social Skills: Promoting Positive Behavior, Academic Success, and School Safety - published by National Association of of School Psychologists.

More Free Publications. Includes report by Surgeon General about ABA-Lovaas treatment for children with autism; IEPs, reading, high-stakes testing, transition plans, children's mental health, discipline, zero tolerance and more.

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Organizations


Asperger Syndrome Education Network (ASPEN)

Autcom - Autism National Committee

Autism Answers.com

Autism Coalition

Autism Research Institute

Autism Society of America (ASA)

Autism Speaks

Families for Early Autism Treatment (FEAT)

National Autism Center

Unlocking Autism

ASA's Autism Source Resource Directory. Find local resources, providers, services and support.

For information about Asperger's Syndrome, contact Autism Spectrum Connection

Directory of Disabilities Organizations and Information Groups. Groups that you can contact for more information about disabilities and educational methods.

Yellow Pages for Kids with Disabilities. Your state Yellow Pages includes evaluators, therapists, advocates, attorneys, health care providers, educational consultants, speech language pathologists, support groups, and more.

Legal and Advocacy Resources. Includes links to legal sites.

Schafer Autism Reports - Subscribe

Explaining Autism to Children

Kids Booklet on Autism - With Tips for Parents and Teachers (PDF). This document from Autism New Jersey explains autism in a way that a child in kindergarten through 5th grade can easily understand. It has information about kids and grownups with autism and fun activities, too. Gain access to a full catalog of awareness supplies when you register to be an Ambassador

Growing Up Together: A Booklet About Friends with Autism (PDF). In this booklet, you will learn about kids you may meet who have autism and how you can be their friend.

My Brother Has Autism (PDF). This book, written by an 8-year-old girl, explains what it is like to be the sibling of a child with Autism. This book is now available in print.

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