Office of Special Education Programs, a study published in Pediatrics reported that autism prevalence went from roughly 1 in 2, ten-year-olds born in 0. As the above table illustrates, the ADDM program has one major shortcoming, which is the lag time between data collection, analysis and publication of prevalence data.
For example, the data published in took four years to analyze and captured ASD prevalence for the cohort born 12 years earlier i. CDC did not report the prevalence estimates for children born in until Although Lorna Wing had been critical in developing the description of the triad of impairments through epidemiological studies, she did not have the social scientific expertise that Rutter had developed through his prolific social surveys.
This gave him the edge when it came to developing a complex diagnostic instrument based on interviewing techniques and working with international collaborators to formalise it. Although it had a catchy acronym, it was an awkward testing instrument and never caught on in the same way that the ADI did. Just as intelligence was a measurable entity that could be applied across a total scale, so autism also became a similar measurable entity.
The growth of testing instruments, such as the ADI and the ADOS, helped to popularise the idea that autism was part of a general scale of human development and that it was therefore a topic of interest to many people, not just the minority who were affected. As Stuart Murray has argued, in the s and s theories of autism were popularised through proliferating media channels that had international reach. Just as testing scales enabled the concept to be expanded as part of a wider model of statistical psychology, so did the representation of autism in the media. This led to new summaries and articulations about what, exactly, autism was, and ultimately led to shifts in the meaning of the concept.
The work of the new autism researchers was fundamental in defining these new conceptions of autism. The autistic children of the s had now grown up and such unusual adult behaviour was now a topic for psychological scrutiny. That is fairly specialist. Wiltshire has since received an MBE for services to the art world and is now an internationally renowned artist. There was something of a self-fulfilling prophecy here: just as measurement scales became increasingly definitive, the demarcation of autism was readily expanded through journalism and general discussion. Like Bowlby and Winnicott had done in the s, they used available media formats in the s and s to ensure that the public understood the new science of autism sought to ensure that new theories of autism were popularised to a wider audience and that ideas about autism were clarified in the minds of the general public both in the UK and abroad.
The large rise in levels of autism across the globe began to be reported in the s. These new concepts and tools were enabling a widespread statistically validated crushing criticism of the first autism and the creation of a new set of quantitative tools that promised to give meaning to the second autism in its new metamorphosis.
These new technologies were radically opposed to psychological models that did not integrate children with low intellectual levels. However, they were also radically opposed to hierarchical, planned social welfare models that imposed ideologies about the logic of care. The new autism was tailored to new liberal societies that sought to develop consumer-oriented models of care and to create models of child rights and disability rights that ensured these new models encompassed all members of society.
By the early s, everyone from children, parents, teachers and educational psychologists to lawyers, police officers and social workers had a clear set of criteria that could be used to make their own claims and inferences about child psychology and about the needs and rights of children.
By the mids, it became apparent that many more children were being diagnosed with autism in Britain than previously. This at least is the feeling of many professionals in the field of child development in Britain, who believe that in recent years they have been seeing more children with autistic spectrum disorders. They found a prevalence rate of 0. Of course it did; it had an epidemiological study to back it up. International studies of autism began to thrive in the s, with some pointing out that changing diagnoses seemed to be leading to more reported cases.
Honda on rates of autism in Japan, gave a rate of The increased awareness of more diagnoses only encouraged further epidemiological studies in the UK and abroad. After the UK Department of Health admitted they were puzzled and concerned by the increase, being reported. Gillian Baird and others then looked back at the South Thames population in the UK and came up with an even higher figure of Two US studies across states then came up with 66 per 10, and 67 per 10, respectively, with Denmark then coming in at The Australians and the Chinese were a little more cautious but came up with figures in the thirties and forties per 10, in the mids, but the British and North Americans continued to publish studies with around 60 per 10, In , a Japanese study then went out on a limb with a rate of The initial reaction to these increased diagnoses was cautious, but it did not take long before multiple theories and explanations were put forward to explain this phenomenon and discussions of the autism epidemic took place on an international platform.
This led eventually to reports of increases internationally. However, it then unleashed a spread of interpretations, analyses, qualifications, explanations and rationalisations internationally. They also knew that there had been an increase in the number of professionals able to identify autism, as well as their ability to reach younger age groups. This seemed to be a puzzle for many who oversaw the increase.
As Gil Eyal and Eric Fombonne have argued, these higher rates were in large part a reflection of the fact that children with both higher intelligence and lower intelligence, or retardation, were also included in the studies. The ADOS has improved the techniques used to measure autism accurately, which is in many ways self-fulfilling.
The more the ADOS is used in studies and confirms findings, the more it is recognised as an accurate measure of autism, and the more it is used in future studies. As described throughout this book, changes in the institutionalisation, schooling and treatment of children who show atypical development have also helped to increase the observation of autism.
Similar changes have occurred in the USA and many other countries. News and reports of an autism epidemic have definitely placed autism firmly on the international health research agenda. This has forced other countries to rethink their theories of intelligence and child development and has challenged them to embrace autism as a charity cause and to do more research into the issue of autism and social impairment. All of this activity supports the spread of the second autism within a wider theory of psychology, creating a solid body of research activity built on this model.
There is now a global tendency to think of child development in terms of autism and the autistic spectrum and so epidemiological studies for this purpose flourish all over the globe. And although many people have asked questions about the increase, no one has asked why this particular model is so attractive to child psychologists and others. The answer, however, is more obvious than it seems. This was accompanied by a growing number of international conferences. In the early s, international conferences on autism focused almost exclusively on successful treatment methods. In contrast with the overall despondent and hopeless attitude to the first autism, the attitude towards the cure of the second autism was hugely optimistic and encouraging.
A International Conference on Autism held in Ontario had only twelve papers on biomedical research out of a total of seventy, with the majority focusing on approaches to develop language and communication skills. There was a huge amount of optimism concerning the treatment of autism in the s amongst some biomedical and educational professionals. This is another cause of the skyrocketing of diagnoses. Even more importantly, the assurance of welfare rights to all those diagnosed ensured that the diagnosis was extremely popular. It reinforced the idea that autistic people had human rights that were similar to, but distinct from, those of the rest of the population.
Christopher Williams from the Institute of Education, London, pointed out that omission, neglect and negligence could also lead to harm against autistic people. At a European level, they argued that a Europe-wide constituency should be arranged regarding the guardianship, legal capacity and criminal responsibility of autistic people and that the European Commission should extend anti-discrimination and racial harassment laws to those with disabilities including autism. There is, of course, an irony to this situation because just as national and international law began to isolate and clarify the rights of people with autism, the number of people with autism began to increase.
Laws concerning autism as a kind of social disability therefore applied to increasing numbers of people and affirmed their international rights to be non-social or non-interactive beings if they so chose. Educational and social work institutions were urged, and later required by legislation, to alter their established practices of social betterment and social organisation based on the fact that there were some people who were impaired in their ability to act typically according to the demands of others.
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Such a model has been successful to a large degree, although its limitations obviously rest on the conceptual margins of the diagnosis and the fact that social institutions do not always easily alter their ideological assumptions about child development and socialisation. The autism rights movement has increasingly demanded that all institutions, even including employers who previously had no approach to autism, alter their behaviour. It highlighted parental rights to be involved in treatment, but in its description it drew, again, almost wholesale from Wing.
This was a perfect opportunity for campaigners to articulate and clarify the condition of autism and the unique needs of autistic individuals and their families. They thus encouraged greater employment support for the families of disabled people and the integration of children with autism into European mainstream schools. In practice, in , the Governmental Committee of the European Social Charter of the Council of Europe included Autism Europe in a list of international NGOs who were entitled to make collective complaints for violation of the European Social Charter, which is how autism began to be acknowledged in international law.
In the late s and early s, Autism Europe became increasingly globally focused. Such changes have encouraged the developmental condition of autism to be conceptualised as a disability in order to encourage international action. Increased international debate also encouraged the exchange of ideas concerning the education and treatment of autistic children. In and , the British National Autistic Society organised visits to the Boston Higashi School, a branch of Japanese treatment centres for autism established in that was very popular amongst parents. Judith Gould and members of the National Autistic Society wrote reports on the teaching methods used there.
The aim was to prepare each child for mainstream education within 2—3 years at the school. The NAS report drew attention to the emphasis placed on physical education at the school, arguing that British schools could perhaps learn from this. In , several parents in Britain appealed to have their children sent to the Higashi School in Boston at the expense of the local authority, though these appeals were unsuccessful. This enabled the international promotion of various treatment programmes, such as the TEACCH programme that had been developed by Eric Schopler at the University of North Carolina in the s after a general disillusionment with psychoanalytic models of therapy for autistic children.
The concept of autism had enabled a huge variety of innovative teaching methods, together with a flood of acronyms to describe them. These acronyms and fixed methods also helped to encourage international dialogue and were presented as products that could be assessed and purchased in an international marketplace. For example, in the mids, the London Early Autism project was established to encourage the enactment of social play at a young age.
As Silverman has pointed out, parent organisations, such as Autism Speaks, have empowered parents to set their own research agendas by affirming their ownership of genetic data and other data that researchers are dependent on. US parental organisations have since become driving forces in increasing global autism awareness. World Autism Awareness Day was ratified by the United Nations in in order to raise international awareness that:.
Air pollution has been linked to autism after this study of children in Shanghai
Epidemiological figures are often used to support the need for global recognition. There would clearly be less global recognition, and medical research funding, if figures were still at 4.
In , Autism Speaks put the figure at seventy million people with autism across the globe. Low rates for autism have now become synonymous with a lack of education about disability rights. This is why many non-Western researchers have sought to emulate epidemiological rates of autism produced in Western countries.
Studies in China throughout the s found rates ranging from 2. This influenced new perspectives on the condition, as did growing international public awareness of autism. They based their figures only on information that had been collected from the Second China National Survey Sample on Disability , in which a sample population of , children with disabilities were identified. The type of their disability was assessed using classifications based on ISD Similar appeals have issued from other countries.
In , Muideen O. Bakare found that The reasons given for this are very interesting. As Eldin et al. The use of internationally ratified diagnostic tools makes sense when making such comparisons, but it is important that all these international researchers are then employing classifications devised by Wing, Rutter, Frith and others in the unique cultural moment described in this book. This is the legacy of the psychology of autism spectrum-making. It is also a symbol of a new version of humanitarian commitment. Developing nations state that they will no longer hide their autistic populations, and medical research companies support this approach because it promises to bring new neuroscientific breakthroughs.
This represents a new version of psychology in a postcolonial context. This replaces human relations theory and more stagnant versions of evolutionary theory, society and psychology that were prominent in earlier work, such as that of Cyril Burt. This new psychology of autism enables atypical children to have their own autonomy but only via this particular set of psychological schemes, systems and concepts framed around the idea of the autistic spectrum.
China presents an example case where growing media attention and growing international consensus have encouraged and enabled the uptake of epidemiological methods developed in Britain. In , Tian Huiping founded Beijing Stars and Rain, a non-governmental rehabilitation centre for children with autism in China, after her son was diagnosed with autism at the age of two.
In , an English-language documentary about the school, Children of the Stars, became a global success and was nominated for several awards. The film presents autism as a major humanitarian crisis that requires the best international medical and educational efforts. Many mothers travel across China to seek help at the rehabilitation centre. The growing awareness that the film generated fueled more epidemiological studies. In , Simon Baron-Cohen and colleagues reviewed all previous Chinese epidemiological studies of autism to find a rate of These instruments provide support for the development of the concept of autistic spectrum disorders across the globe.
This model of psychology is often presented as the basis for humanitarian approaches to psychological conditions in children. In Brazil, similar developments have taken place. Between and , Brazilian researchers published 93 articles and theses and dissertations on the topic of autistic spectrum disorders. In , the Brazilian Ministry of Health established a working group responsible for the care of people with autism, as part of the Brazilian Unified Health System, also signalling the importance attached to this disorder in the field of public health.
The working group has since highlighted its commitment to scientific research to improve care. A few autism epidemiological studies have been conducted in South Asia, for example in Sri Lanka. Even fewer have been conducted in India, using largely indigenous instruments. However, new work now seeks to translate English-language autism screening and diagnostic tools into Bengali and Hindi so that global models of autism epidemiology can become a reality there.
The African Charter on the Rights and Welfare of the Child helped to ensure that children have a right to health, education and special care.
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In , Nigeria adopted the Child Right Act and Bakare used this law to appeal for more training for health care workers and the mobilisation of child psychiatrists, pedagogues, speech and language pathologists and special educators. Such unmet needs are, of course, made apparent via epidemiological studies of autism that present a population figure for children who demand these services under the auspices of their rights as a child. This psychological approach is now influencing theories of child development, education and socialisation across the globe. This is part of a wider international movement to adopt DSM-style psychiatry.
Although such as model is often criticised by those who think that it is part of a global conspiracy by drugs companies to make more money by peddling unnecessary drugs for psychological disorders, this is a simplification of the facts. The growth of global autism research was paralleled with growing rights for children with autism in the UK. These built even further on those established before the s.
In the s, there was a growth of legal cases in which the rights of autistic children were challenged and tested. In , the House of Lords established that LEAs could be held liable if they did not meet their duty of care to provide education to children with special educational needs. The legal recognition of autism has come as a result of work by Institute of Psychiatry psychologists and the Society for Autistic Children, ensuring that the rights and needs of people with this diagnosis were respected.
It was the changes in the s that helped to push through landmark legal changes in the UK, namely the Autism Act In , children diagnosed with autism became the largest subgroup of children registered with a statement of special educational need. The creation of legislation specific to autism has been the first real attempt to do so, and to ensure that the psychology of autism spectrum-making finds its place on the political map. The promotion of new international attitudes to child rights and disability has generated a new internationally accepted model of intervention into atypical child development.
Such an approach has had support from Bakare in Nigeria and in other locations where professionals face many economic challenges in establishing effective networks of care and education for children with an autism diagnosis. This has shifted international attention away from the first autism within general theories of child development, and towards the second autism. Focus is placed on implementing social interventions such as parental skills training and the notification of educational institutions, etc. The fact that epidemiological studies find increased rates of autism, whilst genetic studies find increasing complexity to the disorder and pathogens are still little understood, only compound and support the idea of the autistic spectrum, and encourage further anxieties around what it is all about.
The spirit of international collaboration is now called upon in order to clarify both epidemiological rates of autism and also the international rights of autistic individuals. By providing a global estimate, these researchers did what Lotter had done for the UK in they drew attention to the lack of services for children and adults who could be classed with this condition. It is imperative to engage community resources and more peripheral extensions of health systems as well.
Researchers from Egypt, Saudi Arabia, Oman, Kuwait, Syria, Tunisia, India, Nigeria, China and Brazil, to name just a few, all know autism, a central concept of child development, according to its new reincarnation. Although descriptions of child psychological development and autism have become less focused on the imagination since the s, the public imagination about the meaning and causes of autism has grown substantially.
Britain has always been at the forefront of autism epidemiology but it has also always been incredibly reserved about making interpretations over reported increases. The one notorious exception to this reserved attitude is the work of Andrew Wakefield, who originated the vaccine hypothesis to explain increased rates of autism. In , Wakefield, a gastroenterologist by training, published a study on twelve children aged three to ten years who were referred to a paediatric gastroenterology unit at the Royal Free Hospital in London. A press conference was swiftly held at the Royal Free Hospital where Wakefield made a case for splitting the vaccine into its component parts.
After the press conference, several British papers published the story as front-page news. In , the MRC established a committee that agreed that there was no evidence of a link between MMR and autism and that the MMR vaccination campaign in Britain should persist, hoping to quell public anxiety. However, the vaccine remained controversial, with Wakefield continuing to publish claims of a link, for example in Adverse Drug Reactions and Toxicological Reviews and the Journal of Molecular Psychiatry In response to this ever-increasing controversy, the General Medical Council conducted an investigation into the conduct of the research and the way it was reported, and in the Lancet article was retracted and Wakefield was also removed from the British Medical Register.
The story might have ended there, but Wakefield then moved to Texas where he continues to defend his research and his claims of a causal link between autism and the MMR vaccine. In , he issued a statement that defended his claims about the MMR vaccine, making reference to several legal rulings where parents had been awarded compensation following the administration of the MMR vaccine to their children in Italy and the USA. Most epidemiological studies show that rates of autism have been rising, despite stable MMR inoculations.
A study of children in North East Thames, London, found that clinical cases of autistic spectrum disorder had been rising since , but there had been no sharp increase after the introduction of the MMR jab in Whereas rates of autism in 2—5-year-olds increased from 8 per 10, to 29 per 10, from to , the uptake of the MMR vaccine had been stable in the same birth cohorts. The functional behavioral assessment process typically involves:. Testing hypotheses may occur through additional observation or, less frequently, through systematic functional analysis in which the environment is manipulated to test the hypotheses Carr et al.
In several reviews, as many as 16 different motives for problem behavior were identified Reiss. Prominent among these functions or motives for problem behaviors are: a means of communicating needs and wants effectively; social attention; social avoidance; escape from difficult or boring tasks or other aversive situations; access to desirable tangible items and preferred activities; and generation of sensory reinforcement in the form of auditory, visual, tactile, olfactory, and gustatory stimulation.
For young children with autistic spectrum disorders, who often have little or no ability to communicate using conventional words or even gestures, hand-biting, tantrums, or other disruptive behaviors become effective ways for the child to convey a message. Wacker and colleagues Wacker et al. After treatment, aberrant behavior had decreased an average 87 percent across the range of children, and appropriate social behavior had increased an average 69 percent.
The intervention took approximately 10 minutes per day. Three findings on functional behavioral assessment emerge from 10 reviews of research from to on problem behaviors in persons with developmental disabilities including autistic spectrum disorders Horner et al. Thus, additional. An expanded definition of this proactive rather than reactive process brings together four interrelated components that draw on aspects of many of the interventions described above.
Positive behavioral interventions and supports include Turnbull et al. The expected outcomes from positive behavioral interventions and supports are increases in positive behavior, decreases in problem behavior, and improvements in life-style Horner et al. This includes the expectation of systems change, including changes in the behaviors of oth-. Many of these features are implemented as standard practice in the comprehensive or focused behavioral programs reviewed above and in Chapter The concept of positive behavioral interventions and supports represents a theoretical, scientific, and legal attempt to bring all aspects of these successful, positive interventions to bear on resolving behavior problems in children with autism or other disorders.
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These outcomes included outcomes for children from birth to age 12; they addressed problems of aggression, self-injurious behavior, property destruction, tantrums, and combinations of problem behaviors. Good maintenance rates were observed for a substantial majority of outcomes Males and females scored equivalent successes.
A similar review of a differently defined, overlapping data set Horner et al. Reductions of 80 percent or greater were reported in one-half to two-thirds of the comparisons. Some reductions of 90 percent or greater were reported for individuals with all diagnostic labels and all classes of problem behaviors. The lowest success rate A review of applied behavioral analysis interventions specifically for children with autistic spectrum disorders from birth to age 8 Horner et al. This targeted review found, for 37 comparisons, mean rates of reduction in problem behaviors of 85 percent with a median reduction level of Fifty-nine percent of the comparisons recorded problem behavior reductions of 90 percent or greater, and 68 percent of the comparisons reported reductions of 80 percent or greater.
Though these are very positive findings, evaluating studies, and their results, requires cognizance of the prevailing scientific trend, adopted by many journal editors, that favors publication of studies that report successful, rather than unsuccessful, interventions. Thus, the results summarized above, represented as percentages of published comparisons, represent possible outcomes when these procedures are carefully implemented and progress monitored; they do not reflect the number of unsuccessful interventions, which are not reported.
As described above, research concerning problem behaviors in individuals with developmental disabilities has generally been strong and plentiful. However, there are relatively few studies directly addressing issues for young children with autistic spectrum disorders. In many cases, interventions that were successful with other populations may be appropriate for young children with autistic spectrum disorders Wolery and Garfinkle, Studies testing this assumption with appropriately described and diagnosed children are crucial before it can be accepted.
Using the guidelines established by this committee, published research concerning positive behavior approaches to young children was relatively strong in measurement of generalizability and in internal and external validity see Figures 1—1 , 1—2 , and 1—3 in Chapter 1. Limitations in the existing studies are not due to a generally poor quality of research, but to changes and differences in standards of reporting and research designs in applied behavior analysis and those of the more general, educational and clinical guidelines for treatment evaluation see Chapter 1.
These limitations in these studies were particularly apparent in the selection and description of subjects, random assignment to treatment conditions, and independence of evaluation. As for other areas, these limitations also related to differences in the contexts in which methods were developed. For behavioral interventions that addressed such targets as dangerous self-injury in institutionalized adolescents with profound mental retardation, random assignment, accurate diagnosis, and independence of evaluation may have been of less concern than developing an immediately implementable effective individualized program.
However, in order to evaluate treatments for milder difficulties in young children with autistic spectrum disorders, provision of standard, descriptive information about subject selection, subject characteristics and other aspects of research design is crucial in determining what approaches will be most effective for which children. With these caveats in mind, consistent findings across reviews of published studies indicate several conclusions about current positive behavioral interventions and supports:.
If positive behavioral interventions and supports is seen as a rebuttable assumption, it means that an IEP team can consider other intervention strategies only in comparison with positive behavioral interventions and supports and must have adequate cause for adopting a different strategy.
Evidence for the efficacy of positive behavioral interventions and supports presented above , although encouraging, also indicates that current positive behavioral interventions and supports strategies, as presently implemented, may be ineffective or only minimally effective for up to one-third of all problem behaviors and for up to three-quarters of those problem behaviors maintained by sensory input. In these cases, different or additional strategies may be required, after first considering positive behavioral interventions and supports. In an analysis of interventions included in an overall review of positive behavioral interventions and supports Carr et al.
Although research indicates that reinforcement-based procedures are often not as effective in eliminating severe problem behaviors as quickly as are punishment-based procedures Iwata et al. The increase in efficacy of positive interventions, when based on functional behavioral analysis, reduces the need for punishment-based procedures Neef and Iwata, When a behavior is not maintained by social reinforcement, however, it may be difficult to treat effectively with reinforcement-based procedures only Iwata et al.
Suppression of competing problem behaviors may sometimes be needed before reinforcement of functional alternative behaviors can be effective Pelios et al. In any case, there is agreement New York State Department of Health, that physically intrusive measures e. The use of physical aversives such as hitting, spanking, or slapping is not recommended. Although a comprehensive review of medications and medical interventions is beyond the scope of this report, because of the widespread use of psychoactive medications, they are addressed briefly as they relate to problem behaviors in young children with autistic spectrum disorders.
Psychoactive medications alter the chemical make-up of the central nervous system and affect mental functioning or behavior. Most were developed to treat a variety of psychiatric and neurological conditions other than autistic spectrum disorders; all may have benefits, side effects, and toxicity Aman and Langworthy, ; Gordon, ; King, ; and McDougle et al.
There are currently no medications that effectively treat the core symptoms of autism, but there are medications that can reduce problematic symptoms and some that play critical roles in severe, even life-threatening situations, such as self-injurious behavior. Just as autism coexists with mental retardation, autistic spectrum disorders may coexist with treatable psychiatric and neurological disorders Tuchman, Medications have been shown in some instances to enhance and to be enhanced by systematic, individualized behavioral intervention programs Durand, ; Symons and Thompson, More than articles have been published on the use of psychoactive medications for autistic spectrum disorders.
A more limited number of published reports include double-blind, placebo-controlled studies with young children with autism. Double-blind studies of haloperidol Cohen et al. In addition, newer medications, including selective serotonin uptake inhibitors, atypical neuroleptics, other antidepressants, and stimulant medications such as methylphenidate, have been studied, although most not yet in double-blind studies. Haloperidol was effective in reducing aggression and agitation and had mixed results for improving learning with long-term users, but it carries significant risk of involuntary muscular movements dyskinesias.
Naltrexone-treated groups showed less irritability and hyperactivity than placebo groups on some measures, particularly global ratings, did not differ from placebo groups on others, and showed increases in particular problem behaviors in some instances. Clonidine-treated subjects showed improvements in hyperarousal but reported increased drowsiness, decreased activity, they showed increasing tolerance when used to treat attention deficit disorders. Risperidone shows promise in treating aggression and agitation with less concern about the development of dyskinesias than for the older neuroleptics.
Open trials of serotonin selective uptake inhibitors have shown promise in treating stereotypic or perseverative behavior, possibly because of effects on anxiety. Stimulants may affect sleep and growth in developing children and, in some cases, may worsen autistic symptoms, especially self-stimulation behaviors. Functional behavioral assessment to determine the function s of the problem behaviors increases the likelihood of choosing the correct medication and behavioral interventions. Research is under way to predict responders and nonresponders to medication and to determine which children will benefit from behavioral treatment alone and what combinations of medication and behavioral treatment are most effective.
Many parents also treat their children with nonprescription drugs and nutritional supplements.