Treating the Dental Patient with a Developmental Disorder

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Treating the dental patient with a developmental disorder / edited by Karen A. Raposa
and Steven P. Perlman.
p. ; cm.
Includes bibliographical references and index.

ISBN 978-0-8138-2393-5 (pbk. : alk. paper)
I. Raposa, Karen A. II. Perlman, Steven P.
[DNLM: 1. Dental Care for Disabled. 2. Dentist-Patient Relations. 3. Developmental
Disabilities. 4. Needs Assessment. 5. Oral Hygiene. WU 470]
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Dedication

To my son Tommy for giving me the inspiration.
To my husband, Russ, for driving my motivation.
To my son RJ for encouraging my dedication.
And to my daughter, Brandi-Lee, for providing me with the
fortification to press on no matter what challenges I may face.
I love you all!

To my loving wife, Harriet, daughters, Meredith and Brette, and our loved ones Michael, Jeff, and grandchildren Rachael, Eve, Alexandra, and Matthew.

To my partner, Michael Koidin, and office staff who have been with me forever and provided a quality dental home for thousands of families of loved ones with special health care needs.

To my Special Olympics family, who in the second half of my career enabled me to create a global movement and encounter countless wonderful, caring, compassionate, and competent dental professionals, including all the contributors to this book.

I am truly blessed to have you all in my life.

Contributors

Editors

Steven P. Perlman, DDS, MScD, DHL (Hon)
Global Clinical Director, Special Olympics Special Smiles
Clinical Professor of Pediatric Dentistry
Henry M. Goldman School of Dental Medicine
Boston University
Boston, Massachusetts
Private pediatric dentistry practice
Lynn, Massachusetts

Karen A. Raposa, RDH, MBA
Speaker and author
Raynham, Massachusetts

Consulting Editors

Paul James Vankevich, DMD, CDR, DC, USN (RET)
Assistant Clinical Professor
Department of General Dentistry
Tufts University School of Dental Medicine
Boston, Massachusetts
Burton Wasserman, DDS, DABSCD
Founder and Chair
Department of Dentistry
New York Hospital Queens
Flushing, New York

Contributors

Joseph M. Calabrese, DMD, FACD
Assistant Dean of Students
Assistant Professor
Henry M. Goldman School of Dental Medicine
Boston University
Boston, Massachusetts
Director of Dental Medicine
Hebrew Senior Life
Boston, Massachusetts
Clinical Instructor
Department of Oral Health
Policy and Epidemiology
Harvard School of Dental Medicine
Boston, Massachusetts

Debra Cinotti, DDS
Associate Professor
Director, General Practice Residency Program
Stony Brook University Hospital, Department of Dentistry
Program Coordinator, Dental Care for Persons with Developmental Disabilities
Stony Brook University School of Dental Medicine
Stony Brook, New York

Matthew Cooke, DDS, MD, MPH
Assistant Professor
Department of Anesthesiology
School of Dental Medicine
University of Pittsburgh
Pittsburgh, Pennsylvania
Department of Pediatric Dentistry
School of Dentistry
Virginia Commonwealth University
Richmond, Virginia

Ann-Marie C. DePalma, CDA, RDH, MEd, FADIA, FAADH
Continuing Education Speaker
Stoneham, Massachusetts

Paul S. Farsai, DMD, MPH
Associate Professor
Director of Evidence-Based Dentistry and Behavioral Sciences
Department of General Dentistry
Henry M. Goldman School of Dental Medicine
Boston University
Boston, Massachusetts
Private Practice
Swampscott, Massachusetts

Clive Friedman, DDS
Diplomate American Board Pediatric Dentistry
Assistant Clinical Professor, Schulich School of Medicine and Dentistry
Western University of Ontario
London, Ontario, Canada
Assistant Clinical Professor, University of Toronto School of Dentistry
Toronto, Ontario, Canada
Private Practice Pediatric Dentistry, London, Ontario, Canada

Cristina E. Garcia-Godoy, DDS, CCRP, MPH
Associate Professor and Director of Clinical Research
College of Dental Medicine
Nova Southeastern University
Fort Lauderdale, Florida

Federico Garcia-Godoy, DDS, MA
Dean and Founder
Iberoamerican School of Graduate Dentistry
Department of Pediatric Dentistry
INCE University
Santo Domingo, Dominican Republic
Chair, Special Olympics, Dominican Republic

Paul Glassman, DDS, MA, MBA
Professor and Director of Community Oral Health
Director of the Pacific Center for Special Care
Arthur A. Dugoni School of Dentistry
University of the Pacific
San Francisco, California

Matthew Holder, MD, MBA
Executive Director
American Academy of Developmental Medicine and Dentistry
Global Medical Advisor, Special Olympics International and CEO, Underwood and Lee Clinic

Henry Hood, DMD
Clinical Associate Professor
Department of Orthodontics, Pediatric Dentistry & Special Care
School of Dentistry
University of Louisville
Louisville, Kentucky
Chief Clinical Officer
Underwood & Lee Clinic
Louisville, Kentucky
Co-founder, American Academy of Developmental Medicine and Dentistry

Martha Ann Keels, DDS, PhD
Division Chief, Pediatric Dentistry
Duke Children’s Hospital and Health System
Durham, North Carolina

Ray A. Lyons, DDS, FADPD, DABSCD
Chief of Special Needs Dentistry
New Mexico Department of Health
Albuquerque, New Mexico

Luc A.M. Marks, DDS, MSc, PhD
Professor and Chair, Center for Special Care in Dentistry
Dental School
Ghent University
Ghent, Belgium

Christine E. Miller, RDH, MHS, MA
Associate Professor and Director of Community Programs
Founder, Pacific Special Care Clinic
University of the Pacific Arthur A. Dugoni
School of Dentistry
San Francisco, California

Rick Rader, MD, FAAIDD
Director, Morton J. Kent Habilitation Center
Orange Grove Center
Chattanooga, Tennessee

Maureen Romer, DDS, MPA, FADPD, DABSCD
Associate Professor & Director, Special Care Dentistry
Arizona School of Dentistry & Oral Health
A.T. Still University
Mesa, Arizona

Timothy P. Shriver, PhD
Chairman, Board of Directors, and Chief Executive Officer
Special Olympics

Jo Ann Simons, MSW
President/CEO
Cardinal Cushing Centers
Hanover, Massachusetts
Disability Advisor
Ruderman Family Foundation
United States and Israel

David Albert Tesini, DMD, MS, FDS RCSEd
Associate Clinical Professor
Department of Pediatric Dentistry
Tufts University School of Dental Medicine
Boston, Massachusetts

H. Barry Waldman, DDS, MPH, PhD
Distinguished Teaching Professor
Department of General Dentistry
School of Dental Medicine
Stony Brook University
Stony Brook, New York

Allen Wong, DDS, EdD, DABSCD
Associate Professor, Department Dental Practice
Director, Hospital Dentistry Program
Arthur A. Dugoni School of Dentistry
University of the Pacific
San Francisco, California

Foreword

We live in an age where we count on our health care system to deliver the best scientific knowledge about the human body in the history of humanity. Every day, it seems, there’s another breakthrough—a new treatment for cancer, a new less invasive surgery, a miracle drug, a computerized machine that can work wonders. Arrive at the doctor’s office, and we expect to be amazed by the new, the technical, the cure.

But there is another element to medicine that is not new, but that is no less important: care. It is the language and the tradition of caring. It is, after all, caring that grounds medicine in the wisdom of the ages. Just as we count on the products of the laboratory to amaze us with new promises of life extended and improved, we also count on the human beings whom we meet in illness, or in an effort to preempt illness, to convey that most precious of human gifts: the gift of compassion, of empathy, of caring. No medicine is more powerful than caring.

Alas, for people with intellectual disabilities and development disabilities, the caring that we expect from medical and dental professionals has often been either lacking or openly denied. It is a sad fact that many health professionals, including dental professionals, shy away from treating patients with intellectual or developmental disabilities. Oftentimes, these professionals lack confidence and training for addressing the oral health needs of people with disabilities, even though it can be an incredibly rewarding experience for patients and providers. We are proud that since Special Olympics implemented the Healthy Athletes Program some 15 years ago nearly 1.4 million Special Olympics athletes have received free health screenings, including assessments, some direct treatment, education, and referrals for follow-up care. This has been through the generous donations of professional time and skills by more than a hundred thousand health professionals and students. The contributors to this textbook are among this esteemed group of caring professionals.

At Special Olympics, we see and treat thousands of athletes who have been routinely denied access to dental care their entire lives. As a result, these individuals often suffer tremendous pain from untreated dental conditions that have a detrimental effect on overall health. Based on our research, we believe that 39% of Special Olympics athletes have obvious untreated tooth decay and 29% are missing teeth. An inexcusable 15% of athletes are experiencing pain in their mouths due to dental problems on a regular basis. The clear message is simple: people with intellectual disabilities are facing a silent crisis of injustice in the health care system. For many, neither cure nor care is offered.

This is a crisis that can and must end, and happily, we have it within our power to end it. To do so, education is a critical first step. More than 50% of U.S. medical and dental school deans report that graduates of their programs are “not competent” to treat people with intellectual disabilities. If graduates of the world’s best medical and dental institutions are not comfortable treating people with disabilities, we cannot expect them to provide quality care. But this gap in education can be closed, and this textbook will help close it. I hope Dental Treatment for the Patient with a Developmental Disorder becomes standard reading in dental training programs so that professionals can expand their practices and realize what an incredibly rewarding experience it is to make a difference in the life of a person with a disability.

With education comes confidence, and the source of our confidence today lies in the dedicated men and women who have contributed to this textbook. All have in their own way made it their life’s work to bring justice to our fellow citizens with intellectual and developmental disabilities. Happily, they are each gifted scientists and health practitioners, so the research they offer in this book is of the highest value to the field. But equally happily, they each understand that a health care system that doesn’t care about some is a health care system that doesn’t care. And so each of them has been a leader of our “dignity revolution,” matching their professional expertise with their human resolve to be agents of compassion and care for all.

That combination offers hope to each of us. And it is with that hope that we can all believe that someday very soon, all people with differences will knock on the doors of dentists and health care professionals the world over and be welcomed to the best in cure and care alike.

Preface

I have always sensed that “fear of the unknown” is what has kept many dental professionals from taking the leap and making a concerted effort to provide dental treatment and advocacy for people with developmental disorders. Perhaps the scariest thoughts in life are the “what-ifs.” What if I do something wrong? What if something bad happens when I’m trying to do something good? What if I fail? What if I make a mistake?

My hope is that this textbook, with its unprecedented compilation of work from experts who have taken this leap and are practicing and teaching all over the world, will help new students, as well as long-standing practicing clinicians, feel more confident to go ahead and take that leap. The information provided should help wipe away the “fear of the unknown” factor and, at the least, help more dental professionals feel that they have the power to advocate for this patient population that needs them the most.

My passion for the creation of this textbook comes from what I have learned as both a dental hygienist and most importantly as a parent of a 12-year-old son with autism. He still today is not able to communicate with words effectively enough to ask for help, but he knows those people in his life who have been his greatest advocates and, without words, he expresses his gratitude to them every day. Imagine receiving that gift as a reward for your services.

Dr. Steven Perlman and I are honored to bring this compilation of work to the dental profession. We welcome your thoughts and feedback.

Introduction

The amazing tale of the three dentists, the cliff diver, and the avoidance of the mundane

Before the young, idealistic dental health student got too far into this long-awaited text, I thought I could best serve the contributors as a “warm-up act” before the main act. I thought my role might be likened to the half-baked stand-up comedian opening up for Lady Gaga or Taylor Swift, except for the fact that you can’t fast-forward through the preamble to the concert like you can these introductory pages. So I wanted to start with “so these three dentists walk into a bar and one of them, the short one, has a parrot on her shoulder . . .” But I can’t because despite researching the exiting archives of over three and a half million jokes from over seventy countries, I was unable to unearth even one joke that showcased three dentists walking into a bar.

Often we see Oscar Wilde’s antimimetic philosophy of “life imitates art” come to bear. So these three dentists walk into a bar; more specifically, they were out celebrating their twentieth graduation reunion. After graduation they all pursued different specialty arenas and it was great to finally be catching up. The first dentist shares that he has been practicing cosmetic dentistry in Boca Raton and life has been grand despite having trouble finding a decent mechanic for his Ferrari. The three clinked their shot glasses together in harmonious celebration. The second dentist followed with, “That sounds great. I’ve been practicing oral surgery with offices in the Hamptons and Manhattan,” and that he has everything he had ever aspired to have. The three once again clinked their glasses in unison. The third dentist took a quick sip and shared that he had by some strange twist of fate practiced general dentistry in a large state developmental center, and when that closed he opened up his own practice in the community treating patients with intellectual and developmental disabilities; and that he had fulfilled his every dream as a dentist. The other two dentists half-heartedly held up their half-filled glasses, but instead of initiating a unified clinking of the glasses, the first one suffered, “Geez, sorry to hear that, what went wrong?” The second classmate followed by adding, “Couldn’t you make it with real patients?”

Like I said, there are no jokes about three dentists walking into a bar, and this was certainly not an attempt to create the first one. This encounter, unfortunately, is not unique to dentists or dental hygienists who (somehow) found their professional pursuits satisfied by working with vulnerable patients and their families. The same stigma that is afforded to this marginalized, different and undervalued population is often applied to the dental professionals who both treat and advocate for them. Stigma by association.

And even though this was, admittedly, no joke, there is a punch line. The joke is on them, those classmates who ridiculed and invalidated the career choice of their classmate who found his way into the special needs arena.

I say the “joke is on them” because they failed to understand, appreciate, and value the richness of caring for and about individuals with complex disabilities. They unfortunately never got to experience the joy, the sheer unadulterated joy of practicing the purest form of dentistry. I doubt the joy they seemingly experienced on their Sunday drive in their Ferrari or on the rear deck of their Azimut yacht followed them into the office on Monday. That joy, the joy of caring for someone who has little to offer you except to authenticate your choice of entering the dental profession, is exactly what clinking glasses is all about.

Beyond the joy also lies the opportunity for an ongoing reinvigoration of the rewards of memorizing the Krebs cycle, of spending countless hours learning the obscure branches of facial nerves, and of poring over thousands of images in dental embryology, histology, and anatomy. The rewards of treating people with special needs also provide the rewards of getting to know people with special needs. They will challenge you, inspire you, rattle you, and comfort you. They will preserve in you that fragile hold of the real meaning of being a “healer,” a feeling that was predictably diminished even before you completed your studies.

They will also transform your own self-image of what it means to be a dentist or a dental hygienist. Without realizing it you will cease to simply be a provider, a dental technocrat, to become an advocate. It is virtually impossible to invest in their lives without wanting to ensure that other opportunities (beyond dental care) are made available without undue obstacles or limitations. Thus your own organic initiation into the bicameral role of provider and advocate will be made possible by someone who asks for nothing in return for his or her facilitation.

Whether you become “that” dental professional in your community—the one who accepts, welcomes, and accommodates patients with intellectual and developmental disabilities or simply is exposed to them as part of your training, clerkships, or rotations—you will be better for having “been there, done that.” While we need cosmetic dentists in Boca Raton as well as oral surgeons in the Hamptons, we also need individuals who have entered the dental profession with the realization that along with the skills, the rewards, and the respect comes a reverence for sheer, unadulterated caring. I am not necessarily referencing the need to care for others but rather the need to care for yourself, a need that can be enhanced by offering your skills to people who don’t really care (or know) where you went to school and where in your class you graduated; people who simply care that you care.

So in essence, being a dentist or dental hygienist working in the special needs arena (or inviting several of them into your practice) with all the rewards and gifts it brings is quite possibly the most selfish thing you can do . . . way more selfish than a Ferrari or Azimut yacht. Go for it, indulge yourself. At least you won’t have to worry about scratches and depreciation.

Finally, there is another aspect to caring for dental patients with special needs.

According to the official Current Dental Terminology listing there are 644 different procedures that are performed (at least coded for) by dentists. That number could be broken down into approximately fifty (unique) skill sets (drill, fill, measure, create, craft, align, inject, apply, remove) . . . stuff that is done over and over again.

While that number is hard to ascertain, there are only a certain number of “things” you can do to teeth, gums, bones, nerves, and soft tissue (I think that about covers most of the structures found in the oral cavity; write me if you can think of others for the next edition) in a mouth. By the time the dentist or dental hygienist is 5 years out of school, he or she has probably performed these finite number of procedures enough times that it becomes almost a commonplace occurrence. It’s sad that an invasive, highly skilled procedure with little margin for error being performed on a living human being can become commonplace. But that is the nature of improving competency over time. In fact, the “commonplace” is not only a byproduct of competence but it’s almost a necessary attainment. Highly technical procedures should always demand absolute concentration and focus, but by repetition they become almost mundane; nothing more than a “shoulder shrug” of excitement, a yawn. Many dentists report feelings of boredom, monotony, and indifference; the antithesis of what they experienced when they initially struggled to master complex procedures. They fondly remember the exhilaration of that first flawless extraction. If only they could recapture that. Most “bored” dentists have their complacency readjusted when they encounter a “difficult” or “complex” case. This usually translates into something unforeseen or unanticipated or something atypical happens. While this does indeed “rock their boat” and change the mundane to “all hands on deck” mode, it’s not what dentists or hygienists welcome or wish. The antidote for the mundane dental day is to take a common procedure and provide a novel, unique, or challenging (without the drama and trauma of a procedure gone bad) “milieu.” Enter the patient with an intellectual and developmental disability. A person who because of his or her challenges can take a “mundane” two and a half somersault dive in the pike position and increase its “degree of difficulty.” Individuals, unforgettable individuals who often (not always) bring some baggage into your office can make the mundane a pleasure. They bring novel levels of communication, behaviors, somatosensory frazzles, neuromotor limitations, trust issues, self-stimulatory antics, hypersensitivities, negative past encounters with health providers (including dentists and hygienists), and difficulties processing who you are and what your intentions might be. While many dentists cite these as the reason they avoid “those people,” for those who enjoy, embrace, and welcome a good midmorning challenge, the rewards are plentiful. The reason that not every dental professional accepts patients with special needs is the same reason that some divers prefer the springboard over the platform . . . and then you have the cliff divers—they abhor the mundane.

Dental professionals working in “special needs” prefer the cliff. The climb is worth the view.

Overview: defining developmental disorders

It was not that long ago when children with developmental disabilities and adults with a range of disorders did not exist. We never saw them in our schools, movies, or communities. President Roosevelt may have had an attack of poliomyelitis, but everyone knew he had no problem standing and walking. At least it all seemed that way.

It took a long time to find out that tens of millions of youngsters and the not so young with a vast range of disabilities were concealed out of sight in institutions or in family homes. Somehow it was disgraceful, shameful, embarrassing, and a reflection on other family members to have a relative with some type of developmental or intellectual disability—except maybe a 95-year-old great-grandmother. Only later did we find out that the press and just about everyone in Washington was involved in the cover-up to ensure that the president of the country did not appear weak during the years of the Depression and World War II.

But that was the middle and the final decades of the twentieth century. In this second decade of the twenty-first century, we have learned that there are more than half a billion people in the world who are disabled as a consequence of mental, physical, and sensory impairment (United Nations 2010). “Disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives” (World Health Organization 2008). In the United States, there are more than fifty million individuals with developmental disabilities, complex medical problems, significant physical limitations, and a vast array of other conditions under the rubric of “disabilities” who live in local communities; many as a result of deinstitutionalization and mainstreaming them into community housing, education, and employment (U.S. Census Bureau 2010a).

The number of persons with disabilities is projected to increase dramatically as the population 65 years and over reaches 1 in 5 residents during the next 2 decades (U.S. Census Bureau 2010b, 2010c). Media reports abound with references to the increasing numbers of older individuals with disabilities and government efforts to control the potential costs to service their mounting needs. By contrast, attention to the costs for youngsters with disabilities generally is centered on supportive education programs. Health financial issues, particularly during the years when youngsters enter adulthood, tend to be underreported.

It is estimated that the lifetime costs for all people with intellectual disabilities who were born in the United States in 2000 will total $51.2 billion (in 2003 dollars). These costs include both direct and indirect costs. Direct medical costs, including physician visits, prescription drugs, and inpatient hospital stays, account for 14% of these costs. Direct nonmedical expenses, such as home modifications and special education, make up 10% of the costs. Indirect costs, which include the value of lost wages when a person dies early, cannot work, or is limited in the amount or type of work that can be done, make up 70% of costs. These estimates do not include expenses such as hospital outpatient visits, emergency room visits, residential care, and family out-of-pocket expenses. The actual economic costs of intellectual disabilities are, therefore, even higher (CDC 2010e). Specifically, the average per capita society lifetime cost for individuals with autism through 66 years of age is $3.1 million (Ganz 2007).

Non-institutionalized U.S. residents (in thousands) with disabilities by gender and age: 2006 (U.S. Census Bureau 2010a).

	Male	Female
Sensory disabilities:
5–15 yrs	292	229
16–20	155	126
21–64	2,926	2,215
65–74	1,028	835
75+	1,674	2,347
Total	6,075	5,752
Physical disabilities:
5–15 yrs	289	218
16–20	172	179
21–64	6,346	7,433
65–74	1,828	2,515
75+	2,346	4,453
Total	10,981	14,798
Mental disabilities:
5–15 yrs	1,529	758
16–20	626	388
21–64	4,033	4,186
65–74	654	783
75+	1,053	1,915
Total	7,895	8,030
Self-care disabilities:
5–15 yrs	240	148
16–20	89	66
21–64	1,835	2,197
65–74	455	677
75+	807	1,780
Total	3,426	4,868

TYPES OF DISORDERS

This chapter will describe the more common developmental disorders in the literature today. However, it is important to note that there are literally hundreds that exist and hundreds that are yet to be identified.

Autism spectrum disorders

Autism spectrum disorders (ASDs), also known as pervasive developmental disorders, are a group of developmental disorders defined by a significant impairment in social interaction and communication and by the presence of unusual behaviors and interests. Many individuals with ASD have atypical ways of learning, paying attention, or reacting to different sensations and stimuli. The assessment and learning abilities of youngsters and adults with ASD can vary from gifted to severely challenged. ASDs usually are diagnosed before age 3 and last throughout a person’s life. ASDs occur in all racial, ethnic, and socioeconomic groups and are 4 times more likely to occur in boys than girls (CDC 2010a). “If 4 million children are born in the United States every year, approximately 24,000 of these children will eventually be diagnosed with ASD” (CDC 2010b).

The Centers for Disease Control and Prevention (CDC) conducts two nationally representative surveys in which parents are asked whether their child has ever received a diagnosis of autism. Estimates from these studies suggest that, as of 2003–2004, autism had been diagnosed in at least three hundred thousand children aged 4–17 years (CDC 2010d). “CDC estimates 1 in 88 children in United States has been identified as having an autism spectrum disorder” (CDC 2012).

Based upon these national studies and other CDC local studies, it is estimated that up to five hundred thousand individuals between the ages of 0 and 21 years have an autism spectrum disorder (Yeargin-Allsopp et al. 2003; Bertrand et al. 2005) (). A CDC study found that the rate among young children (3–10 years) was lower than the rate for intellectual disabilities but higher than the rates for cerebral palsy, hearing loss, and vision impairment.

Prevalence of parent-reported autism among non-institutionalized children age 4–17 years (per 1,000 children) by selected demographic characteristics 2003–2004 (U.S. Census Bureau 2010a).

	NHIS*	NSCH*
Gender:
Male	8.8	8.5
Female	2.4	2.3
Age (yrs):
4–5	4.8	4.4
6–8	7.5	7.6
9–11	7.2	5.8
12–14	4.6	4.3
15–17	4.2	4.1
Race/ethnicity:
Hispanic	2.9	3.2
White, non-Hispanic	7.0	6.2
Black, non-Hispanic	5.2	5.8
Highest level of education achieved by family member:
≤ High school grad.	4.0	4.1
> High school grad.	6.6	6.0
Family income:
< 200% poverty level	5.7	5.6
≥ 200% poverty level		7.1

More children are being classified as having an autism spectrum disorder, but it is unclear how much of this increase is due to changes in how one identifies and classifies people with ASDs or whether it is a true increase in prevalence (Shieve et al. 2006). By current standards, “the ASDs are the second most common serious developmental disability after mental retardation/intellectual impairment” (CDC 2010c).

The total number of children (3–22 years of age) with ASDs in a state is, to a great extent, a reflection of the variation in state populations. As of 2003, there were almost 25,000 youngsters with ASDs in California, almost 12,000 in Texas, and approximately 9,500 in New York. In addition, there were between 5,000 and more than 7,000 children with ASDs in 9 states, and between 1,000 and more than 4,000 children with ASDs in 21 states ( 2010).

Whether because of (1) better diagnosis, (2) a broader definition of autism, (3) a marked enlargement in the population of a particular state (e.g., Nevada), or (4) an actual increase in the numbers of individuals with ASDs, nationally between 1992 and 2003 there has been about a 2,560% increase in reported cases. These increases range from 23,300% in Ohio, 17,700% in Nevada, 16,200% in Wisconsin, 12,500% in Maryland, and 11,600% in New Hampshire, to between 1,000% and 5,000% in twenty-one states and less than 500% in eight states. There was a 1,086% increase in California ().

Cumulative growth of autism cases in children (ages 6–22 years) by state: 1992–2003 ( 2010).

The number of children ages 3–22 with ASDs per 10,000 population in Oregon and Minnesota is about 4–5 times greater than the proportions in West Virginia, Montana, Oklahoma, Mississippi, New Mexico, and Colorado, as well as the Northern Mariana Islands, Puerto Rico, the U.S. Virgin Islands, and American Samoa ( 2010).

Types of autism spectrum disorders

1. Asperger syndrome: characterized by a greater or lesser degree of impairment in language and communication skills, as well as repetitive or restrictive patterns of thought and behavior. The most distinguishing symptom of Asperger syndrome is a child’s obsessive interest in a single object or topic to the exclusion of any other. Unlike children with other types of autism, children with Asperger syndrome retain their early language skills (National Institute of Neurological Disorders and Stroke 2010c).

2. Rett syndrome: characterized by normal early development followed by loss of purposeful use of the hands, distinctive body movements, slowed brain and head growth, gait abnormalities, seizures, and intellectual disabilities. It affects females almost exclusively (National Institute of Neurological Disorders and Stroke 2010b).

3. Pervasive developmental disorder, not otherwise specified (PDD-NOS): encompasses cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest (Yale Developmental Disabilities Clinic 2010b).

4. Childhood disintegrative disorder: a rare condition that resembles autism but only after a relatively prolonged period (usually 2–4 years) of clearly normal development. Typically language, interest in the social environment, and often toileting and self-care abilities are lost, and there may be a general loss of interest in the environment (Yale Developmental Disabilities Clinic 2010a).

5. Fragile X syndrome: a genetic condition involved in changes in part of the X chromosome. It is the most common form of inherited intellectual disability in males and a significant cause of intellectual disability in females. Fragile X syndrome is caused by a change in the FMR1 gene. A small section of the gene code (three letters only—CGG) is repeated on the fragile bottom area of the X chromosome. (The name “fragile X” was derived from the appearance of the X chromosome in a specialized tissue culture, because it looked like the end of the chromosome was broken.) The more repeats in the gene code, the more likely there is to be a problem. Normally, the FMR1 gene makes a protein needed for normal brain development. As a result of a defect in this gene, too little or none at all of the protein is produced. A male and female can both be affected, but because males have only one X chromosome, a fragile X is likely to affect them more severely (MedlinePlus 2010). Men pass the mutation only to their daughters. Their sons receive a Y chromosome, which does not include the FMR1 gene. Fragile X syndrome occurs in approximately 1 in 4,000 males and 1 in 8,000 females (Genetics Home Reference 2010).
When the gene shuts down in people with fragile X syndrome, the result is that brain cells do not communicate normally and cause a form of hyperactive brain activity, a form common in many autism spectrum disorders. Compounds exist that dampen these effects. Studies are under way using lithium to intervene with autism and fragile X syndrome symptoms (Fraxa Research Foundation 2010).

6. Savant syndrome: not a recognized medical diagnosis. It is a rare condition in which people with developmental disorders have one or more areas of expertise, ability, or brilliance that are in contrast with the individual’s overall limitations. About half of persons with savant syndrome have autistic disorder, while the others have another developmental disability, intellectual disability, brain injury, or disease. Savant syndrome is 6 times more frequent in males than females (Savant syndrome 2010).

Down syndrome

Down syndrome is a set of mental and physical symptoms that result from having an extra copy of chromosome 21 (called trisomy 21), which affects brain and body development. While individuals with Down syndrome may have some physical and mental features in common, the signs can range from mild to severe. Usually mental and physical developments are slower than in those individuals without the condition. IQs range in the mild to profound range of intellectual disability. Language and physical motor development may be delayed or slow. Common physical signs include:

There are a variety of other health conditions that often are seen, including:

Down syndrome is the most commonly inherited form of learning disability. In developed countries it accounts for 12–15% of the population with learning disabilities (Bittles & Glasson 2004). The chance of having a baby with Down syndrome increases as a woman gets older—from about 1 in 1,250 for a woman who becomes pregnant at age 25, to about 1 in 100 for a woman who becomes pregnant at age 40. But most babies with Down syndrome are born to women under 35 years because of the fact that younger women have more babies. Parents who already have a child with Down syndrome or who have abnormalities in their own chromosome 21 are also at higher risk for having a baby with Down syndrome (National Institute of Child Health and Human Development 2010). Approximately 5,000 children with Down syndrome are born each year in this country. The condition is not related to race, nationality, religion, or socio-economic status (National Down Syndrome Congress 2010). There are presently more than 350,000 people in the United States with this genetic condition (National Down Syndrome Society 2010). Advances in medical treatments have greatly improved the life expectancy of people with Down syndrome, with the majority living past age 55 (Harvard Medical School Consumer Health Information 2010).

Attention deficit hyperactivity disorder

Attention deficit hyperactivity disorder (ADHD) is a neurobehavioral developmental disorder that affects about 3–5% of the world’s population. It is thought to be caused by problems in the regulation of two neurotransmitters, dopamine and norepinephrine, which are believed to play an important role in the ability to focus and pay attention to tasks. “Genetic research strongly suggests that ADHD tends to run in families and that 55% of diagnosed adults have one or more children with ADHD” (Dodson 2008). It usually presents itself during childhood and is characterized by a persistent pattern of impulsiveness and inattention, with or without a component of hyperactivity (Attention-deficit hyperactivity disorder 2010).

In 2006, an estimated 4.5 million school-age children (5–17 years of age) had been diagnosed with ADHD and 4.6 million children with learning disorder (LD). Past estimates of the prevalence of ADHD and LD have varied, in part, because of differences in the criteria used for identifying these conditions and the variations in the population that were selected for study (Pastor & Reuben 2008). A recent national survey of special education students showed that youngsters with ADHD are a rapidly growing group of students within special education programs (Schnoes et al. 2006). Though previously regarded as a childhood diagnosis, studies have shown that ADHD may continue through adulthood, though generally with a reduction in hyperactivity that may adversely affect day-to-day vocational, social, and family functioning (Attention-deficit hyperactivity disorder 2010). Between 10% and 60% of individuals diagnosed in childhood with ADHD continue to meet the diagnostic criteria in adulthood. As they mature, adolescents and adults with ADHD are likely to develop coping mechanisms to compensate for their impairment (Elia et al. 1999; Gentile et al. 2006; Therapeutics letter 2008).

Tic disorder

Tic disorder is a problem in which a part of the body moves repeatedly, quickly, suddenly, and uncontrollably. Tics can occur in any body part, such as the face, shoulders, hands, or legs. They can be stopped voluntarily for brief periods. Sounds that are made involuntarily (such as throat clearing) are called vocal tics. Most tics are mild and hardly noticeable. However, in some cases they are frequent and severe, and they can affect many areas of a child’s life.

The most common tic disorder is called “transient tic disorder” and may affect up to 10% of children during the early school years. Teachers or others may notice the tics and wonder if the child is under stress or “nervous.” Transient tics go away by themselves. Some may get worse with anxiety, tiredness, and some medications. Some tics do not go away. Tics that last 1 year or more are called “chronic tics.” Chronic tics affect less than 1% of children and may be related to a special, more unusual tic disorder called Tourette’s disorder.

Children with Tourette’s disorder have both body and vocal tics (throat clearing). Some tics disappear by early adulthood and some continue. Children with Tourette’s disorder may also have problems with attention and learning disabilities. They may act impulsively and/or develop obsessions and compulsions. Sometimes people with Tourette’s disorder may blurt out obscene words, insult others, or make obscene gestures or movements. They cannot control these sounds and movements and should not be blamed for them. Punishment by parents, teasing by classmates, and scolding by teachers will not help the child to control the tics but will hurt the child’s self-esteem and increase his or her distress (American Academy of Child and Adolescent Psychiatry 2010).

Dyspraxia

Dyspraxia is a neurological disorder of motor coordination usually apparent in childhood that manifests as difficulty in thinking out, planning out, and executing planned movements or tasks. Dyspraxia is a variable condition; it manifests in different ways at different ages. It may impair physical, intellectual, emotional, social, language, and/or sensory development. Dyspraxia is often subdivided into two types: developmental dyspraxia and verbal dyspraxia. Symptoms of the dyspraxia typically appear in childhood, anywhere from infancy to adolescence, and can persist into adult years. Other disorders such as dyslexia, learning disabilities, and attention deficit disorder often co-occur in children with dyspraxia. Estimates of the prevalence of developmental coordination disorder are approximately 6% in children aged 5–11. Some reports indicate a higher prevalence in the 10–20% range. Males are 4 times more likely than females to have dyspraxia. In some cases, the disorder may be familial ( 2010b).

Cerebral palsy

Cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too flaccid. A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse. It is estimated that about 764,000 children and adults in the United States have one or more of the symptoms of cerebral palsy. Currently, about 8,000 babies and infants are diagnosed with the condition each year. In addition, some 1,200–1,500 preschool-age children are recognized each year to have cerebral palsy (National Institute of Neurological Disorders and Stroke 2010; United Cerebral Palsy 2010).

Intellectual disabilities

An intellectual disability (ID) is characterized both by a significantly below-average score on a test of mental ability or intelligence and by limitations in the ability to function in areas of daily life, such as communication, self-care, and getting along in social situations and school activities. ID is the most common developmental disorder. Approximately 350 million people throughout the world are affected by ID. (Intellectual disability is sometimes referred to as a cognitive disability or mental retardation.)

	% increase
Ohio	23,291
Nevada	17,720
Wisconsin	16,195
Maryland	12,529
New Hampshire	11,600
Between 1,000% and 5,000% increase (in decreasing order): Colorado, Arkansas, Minnesota, Illinois, Mississippi, Vermont, Nebraska, Montana, Kentucky, New Mexico, Idaho, Connecticut, Rhode Island, Alaska, Georgia, California, Oklahoma, Iowa, North Dakota, Guam, Maine, Kansas Between 500% and 980% increase (in decreasing order): Wyoming, New Jersey, Utah, South Dakota, Arizona, Pennsylvania, Missouri, Texas, Alabama, South Carolina, Florida, Oregon, Hawaii, District of Columbia, Massachusetts, Virgina, Indiana Between 40% and 472% increase (in decreasing order): Washington, Michigan, West Virginia, American Samoa, Northern Mariana Islands, North Carolina, Louisiana, Puerto Rico, Tennessee, New York, Delaware, U.S. Virgin Islands National average = 2,560% increase