The Brookings Institution and The Help Group CONFERENCE REPORT January 2006

Autism and Hope The Brookings Institution and The Help Group convened leading experts on Dec 16, 2005 for a conference entitled ‘ and Hope.’ The Event was co-sponsored by Cure Autism Now and with the further support of the Karmazin Foundation and Michael Fux. utism spectrum disorders have become among the Amost common and severe developmental disabilities facing children—and thus future gener- ations of adults—in the United States today. More than 1 in 200 young children may now be affected by a neurological condition on the spectrum (which includes autism, pervasive development disorder, and Asperger’s syndrome or disorder). This fact has become increasingly well reported in recent months.

But less well known are two other key facts, which were the main focus of a policy conference held at the Brookings Institution on December 16, 2005. First, over the course of the last 20 years, and particularly the last 10 to 15, early intervention regimens for disorders (ASD) have become much more effective. Children with ASD are learning to speak, and going to school, in significant and The increasing numbers. We are also now seeing many adolescents that, while not cured Brookings in the strict sense, are in many cases no longer exhibiting the types and the severity Institution of symptoms that led to their diagnosis in the first place. Whether or not they can be described as truly recovered, their prospects for leading fulfilling lives—including 1775 Massachusetts Ave., N.W. friendships and meaningful careers—have greatly improved. Even those children who Washington, DC 20036 are more severely challenged can make marked strides in more fully realizing their potential. Dr. Barbara Firestone, President & CEO of The Help Group, emphasized in her introductory remarks that these advances demand the establishment of a comprehensive public policy to ensure that all children in the United States with ASD have the benefit of intensive early intervention.

The second key fact, underscored among others by Senator Hillary Clinton in her taped remarks to the audience, is that the availability of such intensive early inter- vention is highly limited in our country. Most parents cannot afford it—and neither government nor the health insurance industry pays for very much of it either. CONFERENCE REPORT

FACTS, FIGURES, AND Dr. Rafael Castro noted that his profes- HISTORICAL CONTEXT FOR sional group is now frequently treating UNDERSTANDING AUTISM children before their 3rd birthday and sometimes even before their 2nd—a In addition to initiating discussion of the highly desirable situation given the above key themes, the conference’s first plasticity of the young brain. Getting a panel provided context for understanding firm diagnosis at such a young age may the nature of the autism challenge. As require a specialist. But spotting warning documented by Dr. Thomas Insel, signs, and referring children to more Director of NIMH, and Dr. Jose Cordero diagnosticians as needed, can generally of the Centers for Disease Control, be done by the second birthday after autism spectrum disorders are growing going through a 10-minute developmental rapidly in prevalence. The incidence may checklist. This process should be carried have increased by a factor of ten or more out much more commonly than is the since the 1980s (though there is admit- case today. Dr. Cordero pointed out that tedly some uncertainty over the extent to pediatricians have become more likely to which more sensitive diagnostic correctly spot the early signs of autism in techniques are finding cases that would young children—which often include in the past have been missed—or perhaps failure to point and otherwise try to gain misdiagnosed as a problem such as another person’s attention, lack of eye mental retardation). The problem contact, highly repetitive behaviors, and appears comparably prevalent overseas, sometimes a regression in certain and varies little from one ethnic group to language or motor skills. However, as Dr. another (though boys are roughly four Eileen Costello, herself a pediatrician, times as likely to be afflicted as girls). subsequently argued, many pediatricians still do not sufficiently understand the As Dr. Insel pointed out, the recent rapid signs of ASD as well as the importance of growth in ASD suggests an environmental quickly getting diagnosed children into cause of presently unknown type, though intensive treatment programs. For clearly genetics have a good deal to do example, less than half conduct the with susceptibility to autism as well. But simple developmental checkup tests that little can be concluded about specific often give early indications of ASD. causes at this point. He reported that federal funding for autism-related Peter Bell, CEO of Cure Autism Now, research is now estimated in the range of one of the largest ASD-related advocacy roughly $115 million a year, mostly organizations in the country, pithily through NIH (including NIMH). Some described the history of autism. He of the resulting efforts are focused on labeled the period from the 1940s to the multiple neurological or developmental 1960s the age of denial. The ailment had problems, however, and not only ASD. been identified by then, but few recog- nized it—and those who did had

2 January 2006 CONFERENCE REPORT outlandish theories about what caused it, expensive and funding remains generally for example blaming “refrigerator moms” unavailable. Even the Combating Autism for showering insufficient attention and Act would make only modest steps love on their children (in fact, ASD is now towards increasing public resources for known to have biological causes). The the treatment of children currently 1960s through the 1980s Bell described affected by ASD. The Act would provide as the age of defeat, since even though some $100 million a year for treatment; the causes of ASD were more accurately by contrast, up to $5 billion a year may be “But there is broad recognized to be biological, next to needed for the nation’s preschool autistic nothing was known about how to treat the population alone. consensus, as reflected associated set of conditions. as well in previous studies by the National Since the 1990s, said Bell, we have lived TREATMENT METHODS— in the period of hope—the hope that a DEBATE CONTINUES, BUT Academy of Sciences cure will someday be found, and the hope MUCH IS AGREED and American that can already be given to individual Academy of Pediatrics, children and their families from much- Panel 2 emphasized the promise of improved treatment methods. But we modern treatment methods. It under- that early and inten- have certainly not begun to reach what scored that debate continues in the field sive intervention--at might be termed the age of victory over over optimal approaches. But there is least 25 hours a week-- autism, for two main reasons. broad consensus, as reflected as well in previous studies by the National Academy is critically important.” First, a cure remains elusive. Scientific of Sciences and American Academy of research funding has increased roughly Pediatrics, that early and intensive inter- “the argument often tenfold since the 1990s (largely due to vention--at least 25 hours a week--is criti- the Children’s Health Act of 2000). cally important. The core of most inter- used by insurance Today’s research is overseen by NIMH vention plans, it is generally agreed, companies and others and the CDC and their eight national should be a cognitive method engaging to deny coverage—that centers of excellence. The Combating the child’s intellect and emotions and Autism Act of 2005, now before sociability. Applied Behavior Analysis treatment methods are Congress, would roughly double those (ABA) and are probably the two experimental—no research funds, while also increasing best-known and best-studied methods. longer holds water.” funding for early detection efforts. These Given the evidence that has now been developments give reason for hope. But a accrued through numerous studies, the true cure for ASD—if one can even speak argument often used by insurance of a single cure—is probably still a companies and others to deny coverage— considerable distance in the future at that treatment methods are experi- current funding levels. mental—no longer holds water.

Second (as the day’s last panel discussed A simplified history of highlights in in depth), treatment remains very autism treatment might read as follows. A

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method described as intensive behavior Dr. Stanley Greenspan, the creator of this intervention or IBI (sometimes called method, carefully explained the develop- ABA) was first used in the treatment of mental philosophy behind the ASD children in the 1970s and 1980s. Floortime/DIR approach. But he first One of its key methods is to break down acknowledged that IBI methods also learning into simple steps with one-on- make notable positive contributions to an one tutoring, in a manner somewhat akin autistic child’s development. He was also to how Helen Keller was taught. It has gratified to see that many IBI practi- been found to be effective at working on tioners have adopted developmentally- specific behaviors and skills. Beyond this based concepts into their own method- so-called discrete-trial method, other IBI ologies. He showed video clips of approaches involve approving and strikingly improved children. Greenspan reinforcing appropriate behaviors when also presented data suggesting that over they arise in daily life. They also include half of children who followed a creating opportunities for social inter- DIR/Floortime approach eventually action, often with “shadows” present to achieved a mainstream level of compe- help guide the child to interact appropri- tence—not only in attending school, but ately to the extent necessary. in demonstrating emotional and social skills as well. Indeed, in his most recent Dr. Christine Caselles, a psychologist and study Greenspan followed a subgroup of practitioner of the IBI approach at a clinic these children for 10 to 15 years. This in Maryland, pointed to the original 1987 subgroup displayed, on average, compa- study by Lovaas suggesting that roughly rable social and emotional abilities to half of the children participating in this those of a group. (Another treatment method wound up method called relationship development mainstreamed in school without aides. intervention or RDI is based on similar Some recent analyses, she said, have theory as DIR/Floortime, but employs a confirmed comparable success rates, more structured curriculum.) including a new Wisconsin study. Dr. Laurie Stephens of The Help Group In the early 1990s, a method called explained how a combination of the Floortime (formally referred to as the DIR above methods is used in The Help model) was developed to focus on core Group’s special education and treatment autism deficits—emotional, social, and programs that serve more than 500 imaginative abilities—by harnessing a child’s students with ASD on a daily basis. The natural interests and tailoring interactions programs use ABA, Floortime, and other to his or her specific skills and challenges. It approaches as appropriate, enrolling involves not only interactive play, but activ- children as young as three years of age in ities such as varying a child’s environment to intensive programs with high staff-to- teach language concepts in a realistic way. student ratios. Children spend 30 hours a week in school even in the preschool years, with parents actively involved in

4 January 2006 CONFERENCE REPORT reinforcing and complementing the Dr. Eileen Costello on panel 3, many of school’s efforts after hours. The HELP the recent breakthroughs in treatment are Group demonstrates what is possible not yet widely understood among pedia- when programs are specifically designed tricians, other key specialists, or school and properly resourced to meet the system administrators. In particular, we needs of each child. now know, by practical experience and by neuroscientific research, that it is criti- Dr. Catherine Lord showed extensive data cally important to begin intensive inter- “virtually all children from studies conducted in North Carolina vention as early as possible in a child’s improve through and Chicago confirming the arguments of development. Yet diagnosis often does Greenspan and Caselles. Among her not occur today until children reach the early intervention, striking findings was the conclusion that ages of 4, 5, 6, or more. even those for whom virtually all children improve through the goals of being early intervention, even those for whom In addition, even where available, the major the goals of being mainstreamed in school autism therapy methods are generally not mainstreamed in or “losing the diagnosis” entirely remain affordable. Costs can reach or exceed school or ‘losing the unrealistically high aspirations. She also $50,000 a year, and are not routinely covered diagnosis’ entirely explained the highly heterogeneous either by health insurance or by federal, nature of ASD disorders, and the resulting state, and local programs, as documented by remain unrealistical- need for individualized treatment Dr. David Mandell and Stuart Spielman. ly high aspirations.” strategies that often feature more than Some localities provide coverage. And one main methodology. is an example of a state where therapies are more frequently available, as “even where avail- To be sure, some ancillary therapies are discussed by Dr. Louis Vismara, one of the able, the major more established than others. But the founders of the MIND Institute at UC autism therapy meth- main cognitive methods described above Davis and consultant to Senator Don Perata all received emphatic support at the of the California State Senate. But even in ods are generally not conference—as they previously have in California, there are often long delays in affordable. Costs can reviews such as those by the National providing appropriate service. As Dr. reach or exceed Academy of Sciences and American Vismara pointed out, a legislative blue- Academy of Pediatrics. ribbon commission has recently been estab- $50,000 a year, and lished to make recommendations on how are not routinely cov- California might close existing gaps in ered either by health MAKING TREATMENT services. Across the nation, coverage of ACCESSIBLE AND intensive intervention is woefully lacking, insurance or by fed- AFFORDABLE reaching only some affected children or eral, state, and local providing perhaps 10 to 20 percent of the programs, as docu- But despite this hope, enormous public recommended intensity of intervention policy challenges need to be overcome if (which should optimally reach 30 to 40 mented by Dr. David interventions are to be optimized and hours a week). Mandell and Stuart made available to every child on the Spielman.” spectrum. To begin, as underscored by

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Existing federal legislation, notably the • Support for ongoing efforts to have the Individuals with Disabilities Education Act Office of Personnel Management (IDEA), requires the “free and appropriate” mandate that federal health plans cover education of children with special needs— intervention programs carried out by but does not require optimal education, qualified professionals—with the hope specify what appropriate education would be that the idea would then spread to the for children on the autism spectrum, or broader insurance market. In addition, provide adequate funding for early and the military health care system, which intensive treatment. And Medicaid funding has recently adopted unrealistically for treatment varies enormously from state to high thresholds for professional certifi- state. Part of the problem is the fact that ASD cation for all tutors working with ASD has biological causes but is treated primarily children (demanding that each and through educational means—meaning that every tutor be professionally certified, autism treatment methods fall uncomfortably rather than simply those in charge of a between the traditional purviews of the educa- given program), could return to more tional and medical professions. Given this appropriate (yet still high) standards situation, conference participants noted, the of care. country needs a major federal effort to inform relevant specialists about how to diagnose • Federal legislation mandating coverage and treat ASD, to develop more national by all health insurance plans (akin to capacity for treatment, and to help parents the federal legislation on parity for finance the catastrophic costs associated with mental health conditions of the 1990s, effective treatment. as well as federal mandates on minimum length of hospital stays after childbirth). Even if not passed LOOKING BEYOND THE promptly, proposed federal legislation CONFERENCE—AND TO THE may have a very useful role as a model FUTURE for state by state legislation.

Against this backdrop, several types of policy • Efforts to ensure that, under the IDEA initiatives are possible, and in fact some legislation and/or the EPSDT provisions combination of them is probably optimal. of Medicaid, a diagnosis of an autistic One option, simple to describe but poten- disorder leads to assurance of available tially difficult to implement, could be a new services for any afflicted child (even if federal entitlement in the form of an autism the amount of government support treatment and education voucher that draws might depend on parental means). At in part upon existing Medicaid and special present, these laws and regulations education funds. A more likely approach is often do not have their promised effect. to try to extend existing vehicles for health insurance to cover autism treatments as • A clear definition of what is required to well. This could include the following establish an autism spectrum diagnosis (these ideas are illustrative and highly and thus qualify a child for services. preliminary):

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• A clear definition of what type of generally focused much more on research treatment is considered acceptable for into the causes and early indicators of purposes of coverage (as certified by autism (as reflected for example in the major professional associations or a of 2005). But special federal advisory board). there is growing support for a policy agenda that would increasingly include • A clear definition of what types of treatment and funding issues as well. providers may qualify for coverage (for example, a tutor team might be Autism and hope are no longer mutually “Autism and hope permitted to include college students or exclusive. While we press forward to find are no longer mutu- graduate students provided that it was causes and cures, we must also emphasize ally exclusive.” overseen and directed by a psychologist, the compelling need to ensure that psychiatrist, developmental pedia- effective treatment strategies are made trician, or neurologist and at least one available as soon as possible to all full-time credentialed lead tutor). children with autism spectrum disorders across the United States. At present, most public policy efforts of the broader autism community are

POSTSCRIPT: CONFERENCE AGENDA

Introductory Remarks Michael E. O'Hanlon, Senior Fellow, The Brookings Institution, Conference CoChair Barbara Firestone, Ph.D., President & CEO, The Help Group, Conference CoChair Senator Hillary Rodham Clinton (D-NY) (by video)

PANEL 1: The Nature of the Autism Spectrum Problem Moderated by Thomas R. Insel, M.D., Director, National Institute of Mental Health Jose Cordero, M.D., Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control Peter Bell, B.S., M.B.A., CEO, Cure Autism Now Rafael Castro, Ph.D., CEC Partners, Boston

PANEL 2: The Promise of Modern Treatment Methods Moderated by Barbara Firestone, Ph.D. Catherine Lord, Ph.D., Professor, Department of Psychology, Director, Autism and Communications Disorders Center, University of Michigan Laurie Stephens, Ph.D., Director, Autism Spectrum Disorders Program, The Help Group Christine Caselles, Ph.D., Director, Community Services for Autistic Adults and Children, Rockville, MD Stanley Greenspan, M.D., Ph.D., George Washington University Medical Center, creator of Floortime Method

January 2006 7 CONFERENCE REPORT PANEL 3: What's Wrong with Current National Policy And How To Fix It Moderated by Michael E. O'Hanlon Eileen Costello, M.D., Pediatrician, co-author of “Quirky Kids,” Boston University David Mandell, Ph.D., Assistant Professor of , University of Pennsylvania School of Medicine Louis A. Vismara, M.D., Policy Consultant to Senator Don Perata, California Senate Stuart Spielman, Esq., Cure Autism Now

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Copyright © 2006 The Brookings Institution

8 January 2006