Evidence-Based Treatment for Children with Autism: The CARD Model

Kornack

Chapter 1

Introduction

Doreen Granpeesheh

Abstract

This chapter provides a brief overview of the purpose of the book, what makes the Center for Autism and Related Disorders (CARD) Model unique, and what clinicians can expect to get out of reading the book. This chapter lays the foundation for the book by describing the big picture, including the overall purpose, goals, and format of comprehensive evidence-based treatment for children with autism.

Keywords

Center for Autism and Related Disorders (CARD)

autism

treatment

children

evidence-based

model

Welcome to Evidence-Based Treatment for Children with Autism: The CARD Model. Our goal in writing this book is to create the world’s most practical, user-friendly, and enjoyable-to-read manual for treating children with autism spectrum disorder (ASD). Our secondary goal is to describe the way we view the world: the Center for Autism and Related Disorders (CARD) Model of treatment for children with ASD. Hundreds of different treatments are available for children with ASD, most of which have little or no research support. The CARD Model is a successful approach to providing evidence-based treatment that is based on and incorporates the principles and procedures of applied behavior analysis (ABA). There are many different specializations within ABA treatment for children with ASD, including Pivotal Response Treatment, the Early Start Denver Model, Incidental Teaching, the Picture Exchange Communication System, the Verbal Behavioral Approach, to name a few. Many approaches to ABA treatment for children with ASD are distinguished by the fact that they emphasize one particular treatment procedure or another or one particular area of functioning (e.g., language). The CARD Model is an example of a comprehensive approach to the behavioral treatment of children with ASD. By comprehensive, we mean that the CARD Model emphasizes the need for the use of all empirically validated treatment procedures in a customized mix that meets the individual needs of each child at any given time. In addition, comprehensive means that every area of human functioning is addressed in proportions that match the degree of need. Although the CARD Model is, in some sense, a collection of treatment procedures, at a more fundamental level it is built upon a set of basic values and philosophical beliefs that are described in more detail in Chapter 2.

We do not claim that the CARD Model is more effective than any other model of comprehensive behavioral intervention for children with ASD. In fact, virtually no research has directly compared the effectiveness of different models of comprehensive ABA, so it is impossible to address this question with data at this time. However, great pains have been taken to modify and hone the CARD Model over the past 24 years, and the model continues to evolve and improve. Thus, we believe that the approach to comprehensive intervention described in this treatment manual is the best, and we sincerely hope that this book will assist clinicians who are treating individuals with ASD. Furthermore, in writing this book, we invite scientists to join us in defining other treatment modalities and detailing other unique blends of evidence-based treatment and clinical decision-making guidelines. Further articulation and manualization of the various approaches to intervention for children with ASD can only help decrease confusion, increase clarity, spur comparative research, and, ultimately, improve intervention for children on the spectrum.

Thorough program descriptions increase accessibility through replication. As more professionals are able to determine the needs and resources required to implement this model, providing CARD treatment becomes increasingly feasible. This, in turn, may increase accessibility to this effective treatment. Program descriptions remediate the limitations faced within the scientific literature regarding treatment research and efficacy. That is, treatment descriptions in research articles are limited by the space restrictions of scientific journals, and the articles focus, therefore, more on scientific methodology and treatment effects than on describing how to do treatment. It is one thing to know the results of treatment and another to understand how to implement it. Without practical expertise, there is a greater risk of poor implementation, lower quality, and inaccessibility due to lack of resources.

Introduction to Early Intensive Behavioral Intervention

The type of autism treatment that this manual describes is commonly referred to as Early Intensive Behavioral Intervention (EIBI). Other common acronyms from the research literature that mean the same thing are Early Intensive Behavioral Treatment (EIBT) and Intensive Behavioral Treatment (IBT). EIBI consists of intervention delivered in a one-to-one format, starting as young as possible (before the age of 3), done for 30 or more hours per week, and continued for 2 or more years (Granpeesheh, Tarbox, & Dixon, 2009). The general goal of EIBI is to remediate all skill deficits that a child with ASD presents, so she can be caught up to typical development, at least to the greatest degree possible. Behavioral intervention can also be delivered at lower intensities and for older children and produce substantial treatment effects. However, EIBI is the treatment approach for ASD that is supported by the largest amount of scientific research (see Chapter 27).

Format of This Book

This book is first and foremost a treatment manual. The primary purpose of this book is to help practitioners work with children with ASD. This book is not a review of published research, although the content of the book is derived from research. Thus, in order to save space and make the book more readable, we have intentionally included only the minimum of scholarly references. For a comprehensive scholarly handbook on treatment for young children with ASD, we recommend Handbook of Early Intervention for Autism Spectrum Disorders: Research, Policy, and Practice (Tarbox, Dixon, Sturmey, & Matson, 2014). The primary purpose of that handbook is to provide a scholarly review of research, and it consists of 29 chapters authored by the world’s leading autism researchers from prestigious universities and research institutes. The chapters in that book consist of reviews and critical analyses of research, not how-to instructions for helping children with ASD, the latter being the subject matter and purpose of this manual.

This manual is divided into five sections. Section I, Background, opens the book with a basic description of the book, describes the philosophical perspectives and mores upon which the CARD Model is built, and gives a description of the ASD diagnosis. Section II, Treatment Procedures, contains six chapters describing the procedural aspects of the CARD Model of treatment for children with ASD. In Section II, we focus on how to teach. Section III, Program Content, addresses what to teach. Nine chapters comprise this section. The first introduces the rationale and approach that CARD has taken to building the most comprehensive curriculum in the world for teaching skills to children with ASD. The next eight chapters address each major area of human functioning, giving practical advice on how to teach the myriad skills one may need to teach when implementing comprehensive intervention with children with ASD. Section IV, Treatment Oversight, is dedicated to describing practical and logistical details that are often omitted from treatment manuals. Useful tips are given regarding job descriptions, treatment settings, the clinical supervision process, and interdisciplinary collaboration. Section V, Looking Forward, concludes the book. This section includes chapters that address the burgeoning role of technology in autism treatment, global dissemination, how to maintain close contact with emerging research, and how to ensure that your treatment model revolves around research to ensure that children with ASD benefit from scientific findings that help improve the outcome of interventions.

History of the CARD Model

The Center for Autism and Related Disorders was founded by Dr. Doreen Granpeesheh after she completed her doctorate in psychology under the mentorship of Dr. O. Ivar Lovaas at the University of California, Los Angeles. After working as a researcher and clinician in Lovaas’s clinic, providing treatment to the children who were participants in the seminal 1987 paper by Lovaas, Dr. Granpeesheh founded CARD in 1990 with the goal of disseminating top-quality behavioral treatment to as many children as possible. From the beginning, Dr. Granpeesheh’s goals have always been to maintain the highest quality of treatment and to provide global accessibility to that treatment. Today at CARD, we continue to believe that sacrificing either of these two values is unacceptable. Children will not have the opportunity to fulfill their potential if treatment is not top quality, and millions of children will go without any treatment if more is not done to increase access to effective treatment throughout the United States and around the world. Across the 24 years that CARD has been in existence, we have always maintained a perspective that our treatment model is continuously evolving as we incorporate new research findings, update technology, and increase accessibility. Therefore, every aspect of the CARD Model has been analyzed, adjusted, and reworked countless times. The origins and foundations of the CARD Model came from Lovaas’s UCLA Young Autism Project, but the CARD Model has not been recognizable as Lovaas therapy for many years. The version of the CARD Model presented in this manual is, therefore, the most current version, and further refinements will surely continue to be made. Nevertheless, the overall combination of treatment procedures and the scope and detail of the curriculum have reached a level of comprehensiveness such that the CARD Model is more than ready for public consumption.

Tone of this Book

We intentionally wrote this manual using a commonsense, almost conversational tone. This approach is still somewhat uncommon in scientific writing because many fear that using everyday language may dilute the precision of what they are trying to say. While this can be true, we also believe that scientists often hide behind dry and boring language because it makes it easier to speak without having to actually say anything useful. The purpose of this book is to provide you with useful information, so we are going to tell it like it is – we can’t think of any reason not to talk to you in the way we would if we were standing right in front of you. Writing a treatment manual that is, on the one hand, intended for everyday use by a wide variety of practitioners and, on the other hand, based on scientific principles, procedures, and research, is always going to be a balancing act. Therefore, we often explain the same idea twice: once in commonsense terms and once in technical behavioral jargon. Perhaps teachers and clinicians will prefer the former, and scientists will prefer the latter. Our one goal throughout writing this manual, however, is to provide you with information that will be useful and interesting to read, and we sincerely hope that we have done that! We hope that you will enjoy reading this manual and that you will become part of the increasing voices that speak of the benefits of the CARD Model.

Reference

Granpeesheh D, Tarbox J, Dixon D. Applied behavior analytic interventions for children with autism: A description and review of treatment research. Annals of Clinical Psychiatry. 2009;21:162–173.

Tarbox J, Dixon DR, Sturmey P, Matson JL, eds. Handbook of early intervention for autism spectrum disorders: Research, practice, and policy. New York: Springer; 2014.

"To view the full reference list for the book, click here B978-0-12-411603-0.10000-X"

Chapter 2

Philosophy and Mores

Doreen Granpeesheh; Jonathan Tarbox

Abstract

All providers of autism treatment have values and basic philosophical assumptions that influence how they provide treatment, and these basic world views inform their mission and every aspect of how they do their jobs. The values that guide the Center for Autism and Related Disorders (CARD) Model of treatment are fearlessness, innovation, open-mindedness, insistence on highest quality, and the belief that every child with a disability has a right to evidence-based, maximally effective treatment. This chapter discusses these values in order to demonstrate how they can be integrated into the everyday activities of treating children with autism.

Keywords

autism treatment

philosophy

values

autism

children

evidence-based

All professionals working with individuals with autism spectrum disorder (ASD) possess their own values and philosophical perspectives, and each organization consists of a unique culture, inevitably built both from an implicit blend of the individual values of the employees who work there and the values of the organization that are explicitly stated and promoted. At Center for Autism and Related Disorders (CARD), we believe that values guide action and that it is therefore crucial to clarify one’s values and make them explicit, all the while being reasonable and open-minded about differing perspectives. In this chapter, we briefly describe the core values and philosophical perspectives that form the foundation for the CARD Model of behavioral intervention for children with ASD. Although values and philosophy sound like highly conceptual topics, we take a practical approach by giving concrete examples of everyday clinical and organizational decision making as examples of actions guided by CARD values.

All Humans Are Capable of Learning

We believe that all human beings are capable of learning. The history of developmental disabilities, in general, and of ASD, in particular, is comprised of a long, sad series of popular misconceptions about why people with developmental disabilities cannot learn. Terms such as untrainable are thankfully no longer considered acceptable, but the underlying bias to blame teaching failures on children with ASD remains the same. Dozens of excuses have been offered by those who fail to produce successful learning, but they all boil down to one false notion: There is something inside people with ASD that prevents them from learning. This is just plain wrong. All human beings are capable of learning a little bit more tomorrow than they know today, and children with ASD are no exception.

Because all humans are unique, each individual child’s rate of progress in learning is different. Each person’s learning is affected differently by various environments, procedures, and contexts, so individualized treatment programs must be designed to maximize strengths and remediate skill deficits based on each individual’s unique characteristics. This is why it is so critical that the educational, social, and behavioral development of each child is continuously monitored by highly trained experts in evidence-based treatment.

Children with Autism are Whole People

We believe that all children with ASD are whole people, consisting of biology, physiology, sensory profiles, a family system in which she lives, and a long and complex history of reinforcement. There is an old saying that, If you have met one child with autism, you have met one child with autism. That is to say, each child is different, and no two children are the same. This basic assumption is extremely important because it affects everything we do. For example, if you have used one particular way of teaching a particular skill to children with ASD, and it has worked with the last 20 children, that does not necessarily mean it is going to work with the next child. Every set of parents is also unique. Each family’s cultural background, language status, economic status, and individual health status are going to affect the treatment that you deliver to their child since that child is part of that family system.

Fearlessness

A wise soldier once said, The difference between a hero and a coward is not fear. Everyone has fear. The difference is what you do while you are afraid. Of course, treating ASD is not the same as being shot at in a war, but the quote has implications for what we do on a daily basis. Life is full of opportunities to make mistakes and fail. It is tempting in all areas of daily life, including in the course of providing services to people with ASD, to focus on the negative, to always identify ways in which something can go wrong. This is a natural tendency, and it is probably healthy and adaptive, at least to some degree. After all, if all dangers are ignored, one is bound to do something careless that will have negative consequences. However, we have found that great things are rarely accomplished when we do what feels safe. We believe it is our duty, and it is the duty of autism treatment providers, to make a real difference in the world. Millions of individuals with ASD go without treatment day after day because treatment providers aren’t available or because funding for treatment is denied. All of those individuals deserve the opportunity to fulfill their potential. We have found, almost without exception, that you simply have to step outside your comfort zone if you want to make a real difference in the world. The universe has a natural tendency to change slowly if left to its own devices, and human culture is no different. Real change requires practitioners to change their own behavior in large and often uncomfortable ways.

Many of the most important steps we have taken in making evidence-based treatment available to more children with ASD seemed reckless at the time. For example, decisions regarding how many new staff to train and hire, where and when to open new clinics, and whether to work with a new funding source that introduces bureaucratic challenges are very likely to be influenced by your fears of failure, particularly from a business perspective. We have found, time and again, that if we make top-quality treatment for children with ASD available to the community, families need it and will work with us to make treatment available for their children. Of course, expansion and growth need to be tempered by real-life financial contingencies, but if you wait until every single detail has been planned out or if you wait until you have a virtual guarantee that everything you do will work, your organization, and the entire discipline of applied behavior analysis (ABA), will never catch up with the desperate needs of the autism community.

Running an organization is full of decisions to be made and tasks to be carried out that engender fear, even in the most seasoned clinicians. To lead effectively, these fears cannot influence decision making. Dealing with problematic staff is a classic example. If leaders allow fear of disapproval or fear that their staff will not like them to stand in the way of doing what needs to be done, then negative consequences for the organization and, ultimately, for the children are unavoidable. If you avoid giving corrective feedback to an employee or colleague who desperately needs it, you do not make the problem go away; you just demonstrate to the rest of the organization that you are not willing to face the problem. Initiating any major organizational change is another classic example. In order to get better, one needs to admit that one is not good enough as one currently is. To admit that one needs to design and implement a better clinical staff training procedure, one must admit that one’s current procedures need improvement. To admit that one needs to hire more clinical supervisors is to admit that one’s current supervisors are overworked and, therefore, probably not performing at their best. All of these scenarios are real decision points that providers of autism treatment face on a daily basis, and all of them make a real-life difference in the quality of services one can offer one’s clients. Being fearless means behaving how you know you should, even when it is dreadfully uncomfortable.

Innovation

At CARD, we believe it is important to be in front of the wave of innovation, within the fields of autism and ABA specifically, and within the economy and technology in general. In a very real sense, change is the nature of the universe, and organizations that resist change will never succeed in preventing it; they will simply be left behind. To this end, the CARD approach to innovation includes innovating the ways in which ABA treatment, training, and supervision can be done remotely through global workshop and consultation services (practical details to be provided in Chapter 28 on global dissemination). The most obvious source of change and innovation in the world today is the information technology revolution. Many in ABA have been leery of the intrusion of technology into ABA – an approach to treatment that is so fundamentally human and social. Caution is warranted, but the information technology revolution cannot be held back, and technology holds tremendous promise for bringing down the cost of ABA treatment and increasing accessibility to more people living with ASD around the world. Chapter 26 on technology will discuss this potential further.

Open-Mindedness

We all want to be right. Unfortunately, this desire can get in the way of being as effective as we can be. The world of autism treatment is a complex one, and many players are at the table, all of whom think they are experts and that they have the right perspective. The resulting situation is incredibly complex and often contradictory. This complexity is, of course, tremendously frustrating for parents and families living with ASD, but it can be difficult for professionals as well. In the face of so much chaos, it can be tempting to circle the wagons and take a stand for your personal view and fight against others’ influence. The reality of the situation, however, is much more complex. At CARD, we believe that we will never know everything and that we can only be our best if we are constantly open to the ideas of others. Conflicts among professionals of differing disciplines are often a source of consternation in autism treatment. There is a stereotype of the arrogant behavior analyst who believes that a hardcore ABA perspective on the world is the only thing worth talking about and that anyone who doesn’t get it is stupid. Thankfully, the reality of the field is that less than 1 percent of behavior analysts fall into that stereotype. The truth of the matter is that many thousands of professionals are genuinely dedicated to helping individuals with ASD lead better lives. It is also possible that the majority of the treatment procedures that are being implemented out there do not actually work, and entire disciplines may be based on theories and procedures that are not actually effective in treating ASD. This possibility has led some behavior analysts to become frustrated with professionals who propound the myriad unproven treatments, and this frustration is understandable. However, behavior analysts are not the only professionals who treat ASD, nor will we ever be. Nor do we want to be. It is critical to the continued health and vitality of the science of behavior analysis that we remain open to the contributions of other professionals, as well as those who are not treatment professionals, such as family members and advocates. Section III, the section on the CARD curriculum, will describe in great detail how information from cognitive and developmental psychology has been used to create a more comprehensive curriculum than had been developed from a purely behavioral approach in the past. Purely behavioral procedures are still used to teach the content, but a productive, vibrant cross-pollination among the various disciplines has helped to create our curriculum and has the promise to continue to help to optimize the development of the discipline of behavior analysis.

Frequently in autism treatment, professionals from particular disciplines appear to fail to understand (or perhaps intentionally disregard) the contributions of other disciplines. For example, consider a child with ASD who suffers from diarrhea several times per day for an extended period of time and who also engages in frequent tantrums. A particularly close-minded behavior analyst might insist that the tantrums are purely behavioral and simply need to be placed on extinction. Worse yet, the behavior analyst might make medical recommendations regarding how to treat the diarrhea without referring the learner to a medical doctor. Consider another awful, and yet sadly common, example. A child with ASD sees a medical doctor who is a practitioner of unproven or off-label medical treatments for ASD. After a brief initial interview with the child’s mother, the doctor prescribes methyl B-12 shots and explains that they are likely going to result in the child’s increasing his language from one-word utterances to three-word sentences. In this case, the medical doctor is failing to realize that his scope of practice is to treat his patient’s medical problem, not to increase language, especially by way of a treatment that has no significant research support. To be open-minded is to be willing to consider other perspectives and not sacrifice your foundational professional beliefs.

Insistence on Highest Quality

At CARD, we believe that autism service provision must be conducted with the highest possible level of quality. The unfortunate state of affairs today in the autism community, both within the ABA field and outside it, is that the integrity and quality of treatment procedures have been seriously compromised. Today, if one were to choose a service provider at random, one’s chances of selecting a service provider who implements high-quality treatment would be unacceptably low. No research yet exists that has attempted to quantify the problem, but it is highly common to receive reports from parents of ghastly treatment quality from a myriad of treatment providers. A number of factors likely lead to the provision of low-quality services, and Chapter 22 on training and quality control provides practical details on how to maintain high quality. Below, we briefly discuss some community factors that may contribute to the problem.

Financial influences. Service provision agencies are businesses that exist in capitalist, consumer-based economies, so it is impossible to avoid the influence of financial matters. Billing more hours, spending less money on training and quality control, and increasing clinician caseload will all improve a company’s bottom line. These facts are unavoidable. However, we believe that the moral obligation to provide the highest quality service must take precedence over the opportunity to make large amounts of money. Thankfully, the amount of funding for ABA services that is currently available in many regions is such that achieving financial success and providing the highest quality services are not mutually exclusive; one can provide the highest quality service and still have a financially successful company.

Inadequate training. The quality of ABA services that one can provide will always be limited by the quality of training one has received in the past. It is, unfortunately, very common for a professional who has only a small amount of entry-level experience at a good-quality agency to start her own agency and then act as the clinical director. It is inevitable that the quality of the service that the agency will provide will be inadequate. Indeed, it may even approach impossible for the agency to provide a top-quality service because the skill sets that qualified case managers, supervisors, and clinical directors possess are simply not the same as those of entry-level staff, and they cannot simply be learned through books or seminars. If that agency then hires only entry-level staff and promotes only from within, as is often the case, then years or even decades can elapse without the quality of the organization ever improving. Perhaps most frightening, it may even be common in such cases for the staff at the agency not even to be aware that they are providing a sub-par service because they have never had experience with a top-quality level of service. The problem is compounded for society when staff at agencies such as those described above then leave and start their own agencies, further multiplying the dissemination of poor-quality practices.

Lack of an expert ABA leader. Currently, not enough expert ABA clinicians are available to serve all of the individuals with ASD who need their help. The desperate need for services has created a demand for the creation of new agencies. It is not surprising, then, that people from all walks of life have stepped in to fill the void. For many, such as parents or professionals from other disciplines, this is done out of benevolent motivation – they want to help people who are not being helped. This void also represents a tremendous business opportunity, and a small but significant number of agencies have been started by people who have no knowledge of ASD but simply realize the business potential of starting an ABA agency. Regardless of motivation, it has become commonplace for someone other than an expert ABA supervisor to start an ABA agency. There is no reason that a businessperson, a parent, or a professional from another discipline cannot found and run a quality ABA agency, as long as someone is present who is qualified to make the tough clinical decisions. In order for an agency to provide a top-quality service, the clinical services must be directed by someone who possesses at least a master’s degree, is preferably a Board-Certified Behavior Analyst (BCBA), and, most importantly, has years of experience in implementing and supervising top-quality services for individuals with ASD. There is no substitute for this person in an ABA agency. If you currently own, run, or are working in an ABA agency, it is critical that you ask yourself whether you have such a person. If you do not, you must get one or arrange for one of your current leaders to obtain the training and mentorship required.

Lack of experience with ASD and skill acquisition. Another factor contributing to low-quality service provision in autism treatment is the fact that many agencies are directed by ABA clinicians who only have good-quality experience in an area of ABA other than skill acquisition for individuals with ASD. There are many other critically important areas of work in ABA, including organizational behavior management, regular education, functional analysis, and treatment of challenging behavior, among others. Supervisor-level expertise in these other areas makes one a more well-rounded behavior analyst, but it does not qualify one to supervise skill acquisition programs for children with ASD. Just as a BCBA who has only taught preschoolers with ASD would not be qualified to step into a boardroom and sell a performance-management consulting contract to the CEO of a Fortune 500 company, a BCBA who has only assessed and treated challenging behavior is not qualified to direct an entire agency that focuses primarily on skill acquisition for children with ASD. It is true that the principles of behavior analysis are applicable across behaviors, settings, and populations, but a brain surgeon nonetheless needs experience doing surgery on brains, and an oncologist needs specialized experience to become an expert in treating cancer. Just as the fundamentals of anatomy and physiology are not sufficient for a medical doctor to be an expert in any specialty, knowing the principles of behavior and passing a behavior analyst certification exam are not sufficient to ensure expertise in all specialties of ABA, particularly that of skill acquisition for children with ASD.

At CARD, we are faced with choices that gravely affect quality on a daily basis. As we fulfill our mission to expand access to ABA treatment to the maximum possible number of families affected by ASD around the world, the possibility of expansion potentially threatens the level of top-quality treatment that we maintain. Providing ABA services is a constant tightrope walk between quality and quantity. Many great university clinics, where the elite in behavior analysis receive graduate education, serve fewer than a dozen children at a given time. These clinics should be praised for an almost absurd level of quality. On the other end of the continuum are enormous agencies that serve hundreds, perhaps even thousands, of individuals with developmental disabilities but do so at such a poor level of quality that one wonders whether the services are much better than babysitting. The CARD philosophy on this balance has always been the same: Never sacrifice quality, and never give up on increasing quantity. Both can be done simultaneously; the key is to face the tough decisions that must be made at every turn and never to allow financial variables to have an undue influence.

The Right to Evidence-Based, Effective Treatment

At CARD, we believe it is self-evident that every person with ASD has a right to treatment that actually works. Just as every human has a fundamental right to dignified education and medical care, every child on the spectrum has a right to effective treatment. We believe that this right is inalienable and that it transcends cultural, ethnic, religious, and economic backgrounds. We believe that the right to effective treatment is as fundamental as any other human right and that those who are denied this right should be nothing less than outraged. Tragically, due to lack of funding or lack of trained professionals, the majority of children with ASD in the United States, and the vast majority of children with ASD around the world, are denied this right on a daily basis. The desperate need to spread effective, evidence-based treatment around the country and around the world is the primary catalyst for writing this treatment manual, and we sincerely hope that reading this will inspire parents, teachers, and practitioners everywhere to take a stand and do what it takes to ensure that the children with ASD in their communities have access to top-quality treatment.

Global Reach

At CARD, we believe it is the responsibility of the ABA profession to reach out and extend top-quality services to every child with ASD around the world. As will be further discussed in Chapter 28 on global dissemination, millions of children with ASD around the world are currently languishing without effective treatment, and we believe the status quo is unacceptable. As discussed earlier, we are not willing to compromise quality for the sake of dissemination, but we are equally unwilling to sacrifice dissemination for the purposes of quality. We believe we – and all ABA service providers – have a moral obligation to help to extend access to top-quality treatment to the maximum number of children with ASD around the world.

Recovery from ASD is Possible

Recovery from ASD exists, and the willingness to acknowledge it is a fundamental part of the CARD approach to autism treatment. However, recovery is a controversial topic, so some further explanation is warranted. At CARD, we define recovery from ASD as follows: A person can be said to have recovered from ASD if that person once had a confirmed ASD diagnosis and then, after receiving treatment, no longer demonstrates clinically significant impairment. In plain English, a child has recovered from ASD when there is nothing left to treat. For the purposes of research and documentation, we use the following method of measuring recovery. A person can be said to have recovered from ASD if he demonstrates all of the following:

1. Scores in the average range (no more than one standard deviation below the mean) on standardized assessments of intelligence, language, adaptive skills, and social skills;

2. Receives passing grades in regular education without any supports or modifications (unmodified curriculum in a regular education classroom with no aide); and

3. Is evaluated by a medical doctor or licensed psychologist, who is an expert in diagnosing ASD, and does not meet diagnostic criteria for any ASD based on current level of functioning.

Most of the mainstream medical community still do not acknowledge that recovery from ASD exists, even though top-quality ABA programs have been producing it in some percentage of the children they have treated for at least a couple of decades. However, recent research has further raised awareness of the reality of recovery from ASD (Fein et al., 2013; Granpeesheh, Tarbox, Dixon, Carr, & Herbert, 2009), and the idea seems to be gaining at least a small amount of acceptance in the mainstream community.

At the current time, it is not known precisely what percentage of children with ASD who receive top-quality Early Intensive Behavioral Intervention (EIBI) will recover, but the research seems to suggest that it is somewhere between 20% and 50%. It is also impossible, at this time, to predict whether any particular child will recover from ASD. At the current time, the majority of children with ASD will not recover, even when given the best quality EIBI. The one question that all parents ask when they hear that recovery exists is whether their child will recover. It is critical to give parents an honest depiction of the facts and make it clear that recovery exists and may be a possibility but that it should not be expected or relied upon. This uncertainty naturally makes parents feel enormous anxiety and stress, and some believe that parents should not be told of the possibility of recovery in order to avoid making them feel upset if their child does not recover. Of course, it is critical to take every reasonable step to avoid making parents of children with ASD feel any unnecessary stress, but we do not believe that the possibility of recovery should be withheld from parents. It’s plainly obvious that medical doctors give their patients an honest appraisal of the various possible outcomes of whatever treatment they are providing – to do otherwise would be to mislead the patient. We believe the same is true of ASD. (For a more extensive discussion of recovery, as well as the potential for prevention, see Granpeesheh, Tarbox, & Persicke, 2014).

When discussing recovery from ASD, it is critical to point out that recovery is not the only legitimate goal of EIBI treatment. The goal of any quality ABA program is to help each individual child reach his or her maximum learning potential. For some, that maximum is recovery. For the others, the maximum learning potential varies greatly, ranging from a child who makes tremendous gains across domains to another child who will remain significantly impaired across all areas of functioning but has made very real progress in core skill areas that improve quality of life. For example, even the most challenged child with ASD can learn to communicate basic needs and desires (if not through speech, then through sign language, pictures, or other means); decrease destructive behavior; become toilet trained; become more independent with daily living activities, such as dressing, eating, and food preparation; develop leisure skills; and learn to coexist with others peacefully and without strife. Although recovery is not currently possible for all children, gains such as learning to tolerate having a haircut, learning to eat at a restaurant in peace, and learning to administer one’s own personal hygiene can be victories that make a very real difference in the quality of life of families living with ASD.

Personal Dignity and Self-Determination

CARD believes in the personal dignity, individuality, and self-determination of every person with ASD. The right of people with developmental disabilities to determine their own fate has been denied for centuries, but the past several decades in American culture have seen a move toward acknowledging that the lives of people with ASD should not merely consist of doing what they are told and remaining calm and quiet. At CARD, children with ASD are given opportunities to express their personal beliefs, feelings, interests, and preferences. Fortunately, when done well, ABA provides the tools for maximizing independence and self-determination. By building choice into every aspect of treatment whenever possible, we automatically ensure that the child has some say over the course and format of her education and treatment. By focusing on teaching spontaneous functional communication (i.e., mands in verbal behavioral jargon), we ensure that the child with ASD has the right and ability to tell others what she wants, not merely to respond to the commands and comments of others.

Summary

The field of autism treatment is comparatively young, and new funding streams attract both highly qualified service providers and grossly unqualified charlatans. Individuals who have ASD have a right to top-quality, evidence-based treatment, although many are deprived of this right due to economic, geographic, cultural, and economic barriers that must be overcome. While recovery from ASD exists, it is not the only measure of successful treatment. Behavior analysts have a responsibility to disseminate top-quality autism treatment and increase access to evidence-based treatment without sacrificing quality to ensure that individuals with ASD around the globe have the opportunity to fulfill their potential and live lives that are self-directed and as independent as possible.

References

Fein D, Barton M, Eigsti IM, Kelley E, Naigles L, Schultz RT, et al. Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry. 2013;54(2):195–205.

Granpeesheh D, Tarbox J, Dixon DR, Carr E, Herbert M. Retrospective analysis of clinical records in 38 cases of recovery from autism. Annals of Clinical Psychiatry. 2009;21(4):195–204.

Granpeesheh D, Tarbox J, Persicke A. Prevention and recovery. In: Tarbox J, Dixon D, Sturmey P, Matson J, eds. Early intervention for autism spectrum disorders: Research, policy, and practice. New York: Springer; 2014.

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Chapter 3

The Diagnosis of Autism Spectrum Disorder

Doreen Granpeesheh; Megan Maixner; Cecilia Knight; Monique Erickson

Abstract

This chapter provides an overview of the diagnosis of autism spectrum disorder, including symptom criteria and specifiers. The purpose of providing this information is to give treatment providers information that can help modify and customize the treatment they provide to their clients.

Keywords

diagnosis

autism

symptom criterion

specifier

treatment

treatment provider

Autism spectrum disorder (ASD) is a neurodevelopmental disorder. Neurodevelopmental disorders are characterized by onset in the developmental period and the presence of deficits that produce impairment in personal, social, academic, or occupational functioning. The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association, is the standard reference that is used for medical classification and diagnosis of ASD, among other disorders. The DSM has been revised several times over the past 60 years and is currently in its fifth edition (DSM-5; APA), released in May, 2013. The diagnostic criteria for ASD changed significantly from DSM-IV to DSM-5, and this chapter will describe these changes and what they mean for you as a treatment provider. We will also review who can give a diagnosis, as well as some of the standardized assessments used to diagnose ASD.

Professionals Who Can Diagnose ASD

The authority to give an official diagnosis of ASD is reserved for licensed medical doctors and psychologists. Most parents bring their child to a pediatrician when they first become alarmed that something may be awry with the child’s development. Pediatricians are allowed to give the ASD diagnosis, but, unless they have specialized training and experience in ASD, they should almost always refer the child to a specialist for a more thorough assessment. School psychologists are permitted to give the ASD diagnosis for use in school, but a diagnosis by a licensed medical doctor or psychologist is required for the diagnosis to be recognized outside of the school setting. Regardless of who provides the diagnosis, no formal testing is required, but it is highly recommended. We provide descriptions of some of the more useful diagnostic assessments included in the Center for Autism and Related Disorders (CARD) Model at the end of the chapter.

Diagnostic Criteria

The diagnostic criteria for ASD 299.00, according to the DSM-5, consist of two sets of symptoms: 1) social communication and social interaction deficits, and 2) the presence of restrictive, repetitive patterns of behavior, interests, or activities. These symptoms must present in the early development period, although they may not fully manifest until social demands exceed capabilities, or they may be masked by learned strategies later in life. The symptoms together must cause significant impairment in other areas of everyday functioning and must not be better described by another DSM-5 diagnosis. These criteria are discussed in greater depth below.

Criterion 1: Social Communication and Social Interaction Deficits

The first criterion is persistent deficits in social communication and social interaction across multiple contexts. To qualify for an ASD diagnosis, the child must meet the criteria for all three social communication and social interaction deficits described below:

1. Deficits in social-emotional reciprocity. These deficits may include abnormal social approach and failure of normal back-and-forth conversation; reduced sharing of interests, emotions, or affect; and failure to initiate or respond to social interactions. These deficits often become apparent when an individual 1) does not reciprocate social exchanges (e.g., greetings), 2) does not understand the emotions of others (e.g., keeps playing and shows no reaction when peer falls down and cries), and 3) lacks empathy for others (e.g., does not appear to feel sad when a peer or family member is sad).

2. Deficits in nonverbal communicative behaviors used for social interaction. These deficits include poorly integrated verbal and nonverbal communication, abnormalities in eye contact and body language (e.g., avoids eye contact with others), difficulty understanding and using gestures, and lacking understanding and use of appropriate facial expressions (e.g., does not react to peer’s angry facial expression).

3. Deficits in developing, maintaining, and understanding relationships. Deficits in this area include difficulties adjusting behavior to suit various social contexts, difficulties in sharing imaginative play or making friends, and an absence of interest in peers. Deficits of this nature may be exhibited when an individual does not develop friendships appropriate to a developmental level beyond those with caregivers (e.g., spends no time with peers outside of times prescribed by teachers). Children may also have great difficulty maintaining any existing peer relationships. This type of deficit may also be displayed by an individual who only plays with much younger children and does not have relationships with children of the same age.

Criterion 2: Restricted, Repetitive Patterns of Behavior, Interests, or Activities

In addition to Criterion 1, an individual must meet criteria for at least two of the following four symptom areas related to restricted and repetitive behaviors and interests to qualify for an ASD diagnosis:

1. Stereotyped or repetitive motor movements, use of objects, or speech. Examples of these behaviors include repeating sounds, words, or phrases out of context (ranging from single words or sounds to entire scripts of movies) and repeated movements, such as hand flapping, flipping a light switch on and off, twirling objects, lining up toys, and so on.

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior. Children with these symptoms may display extreme distress at small changes in schedules or routines (e.g., becoming upset when classroom schedule changes), inflexibility with changes to the organization or placement of objects, difficulty with transitions, or rigid thinking patterns.

3. Highly restricted, fixated interests that are abnormal in intensity or focus. Children may display unreasonably strong attachment to or preoccupation with unusual objects, carry or hoard particular objects, or have excessively circumscribed or perseverative interests. Some children perseverate on specific topics (e.g., a child may turn every conversation into a discussion about mathematics).

4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment. Children with these symptoms may display apparent indifference to pain or extreme temperatures or may overreact to differences in temperature. They may have unreasonably adverse responses to specific sounds or textures, such as tantrumming whenever the family uses the kitchen blender or crying in terror upon handling sand or uncooked rice.

Symptoms Must Appear During Early Development

In addition to meeting the criteria described above, symptoms must be present in the early developmental period. In other words, if a child develops typically and then starts to show the symptoms described above during adolescence, she would not qualify for an ASD diagnosis. However, it is important to note that some symptoms are less likely to fully manifest until the child has greater social demands placed on her. For example, if a toddler has no siblings, does not attend daycare, and has very little interaction with neighbors or peers, then her parents may not notice many of the signs of social deficits because the child has had little in the way of social demands placed on her. As she begins to interact with other children more, the seriousness of her social deficits may become clearer.

Symptoms Must Cause Clinically Significant Impairment

In order to qualify for an ASD diagnosis, symptoms must cause clinically significant impairment in social, occupational, or other important areas of current functioning. Put simply, ASD does not simply mean that the child is different from other children but, rather, that his deficits are severe enough to affect his quality of life on a daily basis. For example, social deficits that result in the child making few or no meaningful peer relationships would qualify as clinically significant. Similarly, communicative deficits that are severe enough that the child cannot tell his parents what he wants, thereby leading to tantrums, would cause clinically significant distress for him and his family. Finally, if a child’s obsession with engaging in repetitive behavior takes up so much of his time that he never develops any other leisure skills, his quality of life is likely to suffer to a clinically significant