research paper on autism outline

Autism Research Paper

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Get 10% off with 24start discount code, i. historical development of the concept of autism, ii. dsm-iv criteria, iii. behavioral and cognitive characteristics, a. behavioral characteristics in autism, 1. social behavior, 2. communication and play, 3. preoccupations, perseverations, and resistance to change, b. cognitive characteristics, 1. language, 2. social cognition, 3. attention, 5. executive functions, iv. developmental course and prognosis, v. epidemiology, vi. boundary conditions and comorbidity, vii. biological factors, a. associated biomedical conditions and genetic factors, b. neuroanatomical findings, c. neurophysiological findings, d. neurochemical findings, viii. clinical assessment, a. medical assessment, b. neuropsychological assessment, c. behavioral assessment, ix. treatment, a. pharmacological treatments, b. behavioral and educational treatments.

X. Bibliography

Autism was first described by Leo Kanner in 1943 and became known as Infantile Autism or Autistic Disorder. The concept has expanded since that date, and the term “Kanner autism” is sometimes used to refer to cases with symptoms similar to those of Kanner’s original sample; such cases are a subset of PDD. Kanner’s original description remains influential, and there is a tendency in the literature to assume that persons with “Kanner autism” represent the “nuclear” or “core” form of PDD, an assumption that may not be warranted. Kanner identified symptoms in three main groups: an autistic aloneness, a failure to use language communicatively, and an obsessive insistence on sameness in the environment; these are still the three areas of symptomatology used in current diagnostic systems. Although Kanner originally viewed the autistic aloneness as probably representing a constitutional defect, the two decades following his original work were marked by an unfortunate shift toward a psychodynamic/environmental view of the causation of autism. This served to derail any significant progress in understanding the disorder, as well as to cause a great deal of additional anguish to parents of autistic children.

Beginning with Rimland’s seminal work on autism in 1964, psychology and psychiatry began to explore seriously the biological foundations of autism, and theories of autism as resulting from disturbances in attention, language, sensory integration, perceptual constancy, and other neurological functions were promulgated and tested. Beginning in the early to mid-1980s, research attention also began to focus seriously on the social and affective aspects of autism, both to clarify the range of heterogeneity in autistic children’s functioning, and to posit new core deficits in these areas. Currently, researchers stressing both cognitive and social/affective deficits as primary are in agreement that the fundamental problem is a neurological, and not an environmental, one.

Differential diagnosis was a conceptual problem for early autism research. Some clinicians believed that autism was a variant of or precursor to schizophrenia. Only in the 1970s came an awareness that disorders beginning in infancy must be regarded as separate in kind from those with onset in later childhood, adolescence, or adulthood. Autistic-like disorders virtually always begin before age 3, while schizophrenic-like disorders virtually never begin before age 7. This realization revitalized interest in infantile autism as a distinct nosologic entity, leading to the development of more operationally precise diagnostic criteria and a reconceptualization of the syndrome as a pervasive developmental disorder, under which label it was incorporated by the American Psychiatric Association in the third edition of that body’s Diagnostic and Statistical Manual of Mental Disorders (DSM-III ); this conceptualization has been retained in DSM-III-R and DSM-IV.

Current diagnostic practice, as reflected in the DSM-IV, classifies Autistic Disorder as one of four specific entities within Pervasive Developmental Disorder. Autistic Disorder is marked by the presence of symptomatology in three areas: (1) qualitative impairment in social interaction, as manifested by such behaviors as abnormal or reduced eye contact with others, failure to develop peer relationships, lack of spontaneous sharing of interests with others (e.g., showing or pointing out objects of interest to the caregiver), (2) qualitative impairment in communication, as manifested by delayed or deviant language without attempts to compensate through nonverbal communication, poor conversational skills if speech is present, and repetitive and stereotyped language and play, and (3) a restricted and repetitive repertoire of behaviors and interests, including preoccupations and rituals, or severe resistance to environmental changes.

The specific behavioral manifestations of these traits differ by degree of accompanying retardation and age. A high-functioning, older autistic individual, for example, may attempt to be social, but violate implicit rules of social behavior and be insensitive to unspoken social signals, while a low-functioning or much younger autistic individual may react to other people as if they were little different from inanimate objects. Similarly, a high-functioning, older autistic individual may have perseverative interests in such topics as constellations, train schedules, or dinosaurs, and attempt to engage others in conversations on these subjects, while a lower functioning or younger autistic individual might engage in repetitive motor rituals.

The other specific syndromes classified as Pervasive Developmental Disorders include Rett’s Disorder, Asperger’s Disorder, and Childhood Disintegrative Disorder. Rett’s Disorder has marked behavioral commonalities with Autistic Disorder, including poor social engagement and mental retardation, but differs from Autistic Disorder in several ways: in Rett’s Disorder, the retardation is more invariant and more typically severe, the disorder seems to present only in girls, it is marked by a characteristic pattern of head growth deceleration and loss of purposeful hand movements, sometimes accompanied by hand wringing behavior, following a period of normal development. Many girls with Rett syndrome also have epilepsy and other neurologic abnormalities. Asperger’s Disorder is often considered a mild form of Autistic Disorder, and there is still controversy about how distinct it is from autism; diagnostically, it can be distinguished from autism by normal development of language. Childhood Disintegrative Disorder differs from Autistic Disorder in that the former is marked by a distinctive pattern of developmental regression following at least two years of normal development. This disorder is much rarer than autism, and controversy exists here, too, about the etiological and phenomenological distinctiveness between Childhood Disintegrative Disorder and Autistic Disorder.

Social behavior is considered by many as the hallmark of autism. As with all features of autism, social impairment is highly heterogeneous; it varies with age, with IQ, with setting, and with interactive partner, and is modifiable by treatment.

Social impairment is generally most severe in the preschool years; it is in early childhood that genuine aloofness is seen. Older children may initiate interaction to get their needs met, or may be responsive but noninitiating to others. Older or higher-functioning autistic individuals may approach others in an idiosyncratic, intrusive, and socially insensitive way. These three general styles (aloof, passive, active-but-odd) form the basis of a social typology described by Lorna Wing, and validated by several later studies.

Highly structured settings with enforced proximity to peers may elicit the best peer interactions. Relationships with other children are almost always more impaired than the corresponding behavior with adults; other children may be ignored when adults are not.

Behavioral deficits in social interaction are varied; among the most important, especially in early life, are (1) poor spontaneous imitation of others’ language and behavior, (2) gaze avoidance or other deficits in the use of eye-to-eye gaze to modulate or initiate interaction, and (3) deficits in various joint attention skills, including drawing an adult’s attention to an object of interest by showing or pointing, and following an adult’s attentional focus in order to share it. On the other hand, the “pervasive lack of responsiveness” described in DSM-III is actually uncommon; many young autistic children are selectively attached to their parents, derive comfort from their presence, and enjoy physical affection.

Older studies were composed primarily of clinical descriptions of language features such as pronoun reversal, echolalia, and metaphorical language. More systematic studies have appeared, based on modern understanding of the separable components of language. The more severely affected autistic child may remain nonverbal or minimally verbal and poorly intelligible. In those who develop more language, phonology, syntax, and (more arguably) semantics are relatively spared, although still often at a lower level than nonverbal skills. Verbal memory, prosody, and pragmatics, on the other hand, represent areas of particular difficulty for the average autistic child. In the domain of pragmatics, it is noted that communicative functions are generally more need-oriented and less affiliative, and that violations of language use rules are common, such as violations of implicit rules concerning interpersonal distance while speaking, and the rules of turn-taking in conversational exchange, as well as word selection which is overly formal or pedantic.

Symbolic play is also often observed to be lacking in young autistic children, who sometimes prefer nonsymbolic play activities such as puzzles or other manipulatives. When symbolic play develops, it can be unusually repetitive and inflexible in nature. Some recent evidence suggests that high-functioning autistic children may be not so much incapable as uninterested in engaging in frequent or complex symbolic play.

These constitute the third symptom group. These behaviors range from simple or complex motor stereotypies, to “self-stimulatory” sensory behaviors such as watching fans or water, to long-term perseverative interests. The resistance to change is manifested by tantrums or other extreme reactions to changes in environmental features or in routines. Despite the equal role assigned to perseverations/preoccupations and resistance to change in diagnostic criteria, some recent data suggest that resistance to change is a less common feature of autism than perseverations/preoccupations.

Overall cognitive level, or presence of mental retardation, is an important feature of the individual autistic child, and powerfully predicts the functional outcome that can be expected for the child. Recent work by several research groups, such as the group headed by Rapin (see Bibliography) suggests that high- and low-functioning autism may be significantly different in behavioral manifestations, history, and prognosis, that approximately half of the autistic population falls into each group, and that an IQ cutoff of about 65 makes the most appropriate division between highand low-functioning autism. Beyond studies of overall cognitive level, many investigators have examined typical cognitive profiles in autism, that is, areas of relative sparing and impairment. Some autistic children, both those with severe impairment and those who are higher functioning, display unusual gifts, especially in rote memory, calculations, and music. A majority of autistic children are known to have relative strengths in visuospatial abilities, while tasks requiring verbal reasoning, social cognition, or flexibility pose relative difficulty for the autistic child. Although this description suggests a typical cognitive profile, studies have shown that there is great heterogeneity in the autistic population, and that no single cognitive deficit is universal in autistic individuals.

The autistic child’s language profile is arguably the syndrome’s most distinctive cognitive feature, which has earned it a central position in some theories of the etiology of autism. Many aspects of verbal functioning are impaired in autistic children, as many as 40 to 50% of whom are mute, although this figure is declining with the advent of aggressive early intervention. Those with speech often display echolalia, difficulties with prepositions and pronouns, and inappropriate conversational behaviors. Verbal autistic children generally are able to acquire normal grammatical morphology and syntax, although onset and development are delayed. Some autistic children learn grapheme-phoneme correspondence, leading to early decoding of words; comprehension, however, lags far behind. Comprehension of oral language is significantly impaired relative to expression, and deficits in the semantic and pragmatic aspects of language are common. They are also deficient in interactive communication, including conversational behavior, nonverbal communication and speech prosody. In general, the more linguistic aspects of communication, including especially phonology and syntax, are spared relative to the pragmatic aspects; pragmatic deficits can be seen in the failure to use language functionally to share or request information, or perform other speech functions that serve social, rather than instrumental, functions.

A decade of research has documented substantial deficits in autistic children’s ability to understand the behavior, emotions, and cognitive states of other people. They have difficulty in matching pictures of emotional facial expressions to emotion words, to emotional situations, to similar expressions, and to vocal expressions of the same emotion.

Much recent interest has been stimulated by exploration of autistic performance on “theory of mind” tasks; in a typical theory of mind task, the subject is asked to predict behavior of a doll in a social scenario. The behavior can only be correctly predicted if the subject has a true theory of mind, that is, truly understands the concept of others’ minds, with their own representational capacities, and their own limits on available knowledge. Autistic subjects have been shown to be impaired on these tasks in several studies.

A cautionary note here, however, about all of these social cognitive tasks is that many higher functioning autistic individuals do well on them; the deficits are far from universal. Furthermore, verbal IQ explains much of the variance in performance. Therefore, it remains to be demonstrated that deficits in social cognition, including theory of mind, occupy a key causal role in the syndrome; they may be more a concomitant deficit related to the overall social impairment, although opinions differ widely on this.

Unusual attentional processes are characteristic of autistic children. Autistic children are generally able to sustain attention in tasks adequately when given potent reinforcement or when the task is of interest to them, and higher functioning individuals are able to perform well on standard neuropsychological tests of sustained attention. In contrast, many autistic children appear to have difficulty with tasks requiring the focusing and shifting of attention. They are found to be overselective in their attention to particular parts of stimuli, and studies indicate that they may have difficulties in shifting attention between stimuli, especially across sensory modalities, perhaps contributing to the perseveration so characteristic of their behavior.

Memory abilities in autism have not been as fully investigated as other cognitive functions. Anecdotally, amazing feats of memory have been reported, where autistic individuals recall distant episodes with great clarity and detail; hyperdeveloped memory for stimuli such as routes, spatial arrays, schedules and calendars, and music have also been frequently reported. Tested memory for visual material in high-functioning autistic individuals is often normal. In contrast, memory for linguistic and social material is usually impaired. Autistic individuals appear not to be able to use the intrinsic semantic structure of discourse or stories to aid recall, and in this regard, are more impaired than children with specific language disorders.

Executive functioning refers to the higher level cognitive processes of abstract conceptualization, planning, problem solving, and self-monitoring, self-correction and self-control. These processes are thought to be localized to prefrontal cortex, and are assessed with standardized neuropsychological tests developed for evaluation of frontal functions. Some autistic individuals have great difficulty with these tasks, especially in switching from incorrect strategies during tasks. Some researchers have noted similarities between certain symptoms of autism and those of patients with frontal lobe damage (e.g., perseveration, lack of inhibition), and have proposed that frontal executive system impairment causes distinct social cognitive deficits. Furthermore, some findings suggest that executive system adequacy may predict outcome for autistic adolescents better than measures of IQ.

Autism, as a developmental disorder, cannot be fully described at a single developmental point. The typical description of the autistic child is that he or she lacks interest in relating to others and lacks communicative language. These symptoms are most characteristic of autistic children in the preschool years. Even during this period, there are often signs of increasing social relatedness, especially to caretakers. On the other hand, stereotypies and especially resistance to change, may appear in the preschool years or somewhat later. During middle childhood, autistic children often master some daily living and academic skills and make behavioral adjustments to their parents and teachers. Their behavior may come to resemble that of hyperactive and/or retarded children, or they may develop into socially motivated children, who relate in an odd or idiosyncratic way, with deficits in emotional reciprocity.

Early and middle adolescence can be particularly difficult. Besides the onset of seizures that sometimes occurs in early adolescence, a significant minority of PDD children regress behaviorally and even cognitively at this time. Some autistic adolescents show increasing interest in developing peer relationships during these years. Higher functioning individuals with PDD are prone to psychiatric problems, especially anxiety and depression, as they realize the extent of their difference from peers. On the positive side, both social and language skills often continue to improve during adolescence, and even those children who regress during early adolescence may recover and make developmental progress toward the middle or end of adolescence. Increasing interest in relating to other people can also set the stage for psychosocial interventions or behavioral skill training to be more effective.

Long-term follow-up studies indicate great variability in adult outcomes, but a generally guarded prognosis for good adjustment must be the rule. About half of all autistic adults require residential care; many of the remainder depend on relatives for daily assistance. Gainful employment and fully independent living may be achieved by about one in five. Even for the best-outcome group, social difficulties remain common, marriage or sexual relationships rare, and many social relationships revolve around work or structured activities and interests. It should be noted, however, that the generation of children who have received the benefit of modern special education and behavioral interventions have not yet reached adulthood, and their outcomes, it is hoped, will be significantly better.

Follow-up studies are consistent in demonstrating that higher IQ and communicative language by the age of 5 are strong predictors of better outcome, associated neurological signs and symptoms are predictors of poorer outcome.

Prevalence rates vary according to the definition of the syndrome. Earlier and more restrictive definitions of autism yielded prevalence estimates of 2-4/10,000. Broader definitions encompassing the full PDD spectrum suggested rates three or more times greater. Recent estimates have increased. This may be attributable to improved detection, more lenient diagnoses, or actual increases in prevalence. Most recent estimates are approximately 10/10,000 for PDD disorder, including autism, and another 10/10,000 with a more broadly defined triad of deficits in social relatedness, communication, and stereotyped behavior plus mental retardation. PDD spectrum disorders are more common in males than in females, with ratios found between 2:1 and 10:1, the higher ratios applying more to the Asperger-type clinical picture.

Specifying the boundary between autism and other PDD spectrum disorder (such as Rett’s and Asperger’s Disorder), mixed language disorder, or severe mental retardation can be problematic, and differential diagnoses among these conditions can be difficult. Although diagnostic definitions of autism and language disorder appear distinct, in practice, the differential diagnosis can be unclear, especially in preschool children. Studies from Rutter and colleagues in the 1970’s and from Rapin’s group indicate that the diagnostic groups can be distinguished not only by the presence of autism-related behaviors, but by differences in the language domain itself. The autistic children tend to have greater delays and deficits in language comprehension than the language-disordered children; in the expressive domain, delayed appearance of Wh-questions is highly discriminating. Regression of acquired language skills is also much more typical of autism, but also characterizes children with Landau-Kleffner syndrome. Landau-Kleffner syndrome, also referred to as acquired epileptic aphasia, refers to loss of language in a child in the context of clinical seizures or a frankly epileptiform EEG. There is disagreement as to whether the term should be reserved for children who have no serious associated behavior or cognitive disorders, or whether the term should be broadened so as to include those children who also develop autistic behaviors or become frankly autistic.

Autism may also have increased comorbidity with specific additional disorders. Although still controversial, some investigators present evidence that there is a greater than chance coincidence of autism and Tourette’s disorder. When tics occur in autism, they tend to occur in high-functioning autism.

The relationship between autism and schizophrenia also remains a matter of debate. At one time, the two disorders were believed to be related, but different ages of onset, patterns of symptomatology, and family histories have convinced many investigators that they are unrelated. Nevertheless, reports exist of schizophrenia developing in previously autistic individuals at a greater than chance rate, and a small number of researchers believe that autism is a particularly early and severe form of childhood schizophrenia.

Autism is also related to the presence of seizure disorders. About half of autistic individuals have clinical seizures and/or abnormal EEGs. Infancy and adolescence are high-risk periods for the appearance of seizures. All types of seizures occur; generalized tonicclonic are the most common.

Several specific medical conditions are associated with autism, including phenylketonuria, rubella embryopathy, herpes encephalitis, fragile X syndrome, and neurocutaneous disorders such as tuberous sclerosis. Some studies estimate that between one-eighth and one-fourth of autistic children have an associated medical condition, but it is not known whether these conditions play a causal role in the development of autistic symptoms. Of possible prenatal factors, maternal rubella is most commonly associated with autism, the prevalence for which is 100 times that for the general population. Other obstetrical factors are found more frequently in autistic children than in other populations, particularly midpregnancy maternal bleeding.

The fragile X genetic syndrome has been identified in an estimated 2 to 10% of the autistic population. Fragile X is a rare X-linked syndrome (most prevalent in boys) that involves intellectual impairment, attention deficits, and identifying physical features (prominent ears, long and narrow face, and macroorchidism). Within the fragile X population, it is estimated that 15 to 30% have autistic features, which are qualitatively distinct compared with those seen in the “typical” autistic child. Fragile X autistic children have been found to show perseverative speech as opposed to echolalia, and display active-but-odd social behaviors rather than aloofness. The specific route of pathology connecting fragile X to the expression of autistic symptoms is unknown.

A genetic basis for at least some forms of autism has been demonstrated by family studies. Approximately 3 % of families with an autistic child will produce another child with autism, a prevalence rate which equals 50 to 100 times that of the general population. In addition, the concordance rate for autism in monozygotic twins has been found to range from 40 to 96%. Further support for genetic involvement is found in studies of characteristics in families of autistic children. Siblings of autistic children may be more likely to show superiority in visuospatial over verbal abilities (analogous to the autistic profile), cognitive difficulties such as language disorder, and social disengagement. A few studies have found that some parents of autistic children may be more likely to show unusual social behaviors. The search for specific genetic markers for autism thus far has uncovered two prospects: a marker for a gene that regulates neuron development, and abnormalities of chromosome 15.

Taken together, studies suggest that at least a subset of autistic cases are attributable to genetic origin, either familial or mutational. The incidence of autistic symptoms in medical conditions that are not genetic, however, suggests that the PDD spectrum may represent a variety of etiologies ultimately affecting common brain systems.

Studies of neuroanatomical abnormalities in autistic patients have relied mainly upon postmortem neuropathology examinations and imaging techniques such as positron emission tomography (PET), computerized tomography (CT) and magnetic resonance imaging (MRI). They have generally focused on cortex, brainstem, limbic areas and cerebellum, and have found great variability in brain pathology. Gross cortical and ventricular abnormalities, for example, have been found in some cases and not others. Two structures of great interest are the amygdala and hippocampus, which are limbic structures involved in social/emotional behaviors and in memory. Abnormalities in limbic areas of the brain have been implicated in several studies, most notably in detailed postmortem examinations performed by Bauman and Kemper. These and other studies have also found abnormalities in the cerebellum, although the nature of these cerebellar abnormalities is not consistent across studies.

Findings from PET studies of regional cerebral blood flow have suggested diminished temporal lobe activity, and possible delayed frontal lobe maturation in autistic children. PET studies of regional glucose metabolism, which reflects brain energy utilization, have indicated abnormal patterns of regional activation. Several others have found global glucose hypermetabolism in autistic patients, which was thought to reflect inefficient processing. This feature, however, is not unique to autism.

Studies examining brain waves and oculomotor activity in REM sleep have suggested a developmental immaturity of brain mechanisms controlling sleep and an abnormally suppressed inhibition of sensory responding in autistic children. Brainstem dysfunction has been suggested for a subgroup of autistic individuals by findings of abnormalities in brainstem ERPs, although some studies have failed to support this. Many ERP studies offer support for abnormalities of attention and information processing in autism. High-functioning autistic subjects of varying ages usually show abnormally small amplitudes for a longer latency wave of the ERP thought to reflect the detection and classification of stimuli. Deficiencies in voluntary selective attention and orientation to novel stimuli also have been shown by diminished amplitudes in waves associated with these functions. Several other neurophysiological studies relying on cerebral electrical recording have indicated disruptions in normal hemispheric lateralization in autism.

Investigations of neurotransmitter function have produced inconsistent findings. The most replicated finding among autistic patients is that of elevated blood levels of the neurotransmitter serotonin, which occurs in an estimated one-third of this population, but also is observed in other patient populations. The reason for this elevation is not yet known. Treatments with the drug fenfluramine can greatly reduce levels of serotonin, and sometimes result in improvements in stereotypies and hyperactivity. Studies of the neurotransmitter dopamine are not in agreement, despite reported improvements in many symptoms after treatments with drugs that block dopamine. Overactivity of the opiate peptide beta-endorphin has been suggested by some studies, and supported by findings that opiate blockade improves autistic symptoms in some patients. The peptide oxytocin, shown to promote affiliation in animals, also may be reduced in autistic children. It has been suggested that excess opiates may render social contact unrewarding by producing a state of intrinsic contentment, and may also serve to dysregulate oxytocin.

If the diagnosis is made by a nonphysician and the child has not yet had a medical work-up relative to his/her autism, the following referrals should be considered. Assessment of hearing is important for successful language treatment; if behavior and cooperation are problematic, a brainstem evoked potential assessment should be done. Motor abnormalities are common; these should be assessed by a pediatric neurologist and a pediatric OT. Some physicians believe that a full medical work-up, including EEG, genetic and chromosomal testing, CT scan, and so on, is indicated; others feel that these investigations have a low yield unless there is a specific indication for their use.

Children and adolescents with autism or PDD should also have periodic neuropsychological evaluations. These will describe the child’s current level and profile of cognitive and language abilities, which will have implications for current education and for long-range goals. Periodic reevaluations to monitor the child’s progress will help to detect any deterioration that might signal negative medical or psychological events, and will document the success of treatment and education.

Thorough behavioral description is equally important. Included in the behavioral description should be a profile of the individual’s adaptive abilities and problem behaviors, including those central to the syndrome (such as social incapacity and resistance to change), those associated with the syndrome (such as self-injury and abnormal motor behaviors) and those sometimes found in association with it (such as hyperactivity, aggressiveness, and passivity). Analysis of antecedent conditions and consequences of the behaviors may clarify the role or function of the behavior for the particular autistic individual, and may dictate changes in stimulus conditions and reinforcements to ameliorate problem behaviors, as well as to foster positive behaviors.

Pharmacotherapy can be an effective tool in improving the behavior of some autistic children. Serotonergic agents are often used. Fenfluramine is sometimes prescribed, and has been found to reduce hyperactivity and stereotypies in some, but not all, studies. Clomipramine has been found to enhance social relatedness and decrease obsessional behavior and aggression. Fluoxetine and other serotonin reuptake inhibitors are also used with some autistic children.

Opiate antagonists may help to diminish selfinjury, and reduce social withdrawal and stereotypies. Self-injury and aggression have also reported to be improved by fluoxetine, clomipramine, buspirone and beta-blockers. Neuroleptics, such as haloperidol, and chlorpromazine, have also been found to reduce agitation, aggression and emotional lability, but most physicians are reluctant to use these agents in young children because they can produce movement disorders that may not regress even when the medication is stopped. Lithium is sometimes used to decrease aggressive, perseverative, and hyperactive behavior, and may be tried especially when a family history of bipolar disorder is present.

Other common pharmacological treatments are tricyclic antidepressants, which sometimes enhance language and social behavior. Stimulants have been administered for hyperactivity, but some autistic children experience a worsening of stereotypies or thought disorganization. Stimulants may work best in high-functioning autistic children with absent or mild stereotypies.

Natural treatments, such as dietary interventions or high-dose vitamin regimens have been advocated by some. Empirical support for the claims rests on a small number of studies, and mainstream physicians generally do not advocate their use.

Special education services and behavioral treatments are crucial in producing an optimal outcome. Recent work indicates that aggressive early intervention (as early as 15 to 18 months)can produce the best outcome. The leading proponent of intensive (ca. 40 hours/week) behavioral “drills” (O. I. Lovaas) has reported highly successful outcomes~almost half of the children being successfully included without support in a typical grade-school class. Others using his methods report results that do not replicate his degree of success, but that are nonetheless highly effective. These behavioral programs can be carried out in an educational setting or, especially for preschoolers, in the home. Other preschool programs emphasize a child-centered, developmentally oriented approach, which attempts to stimulate the child to move along a typical developmental trajectory. Any successful program must address each of the behavioral, social, language, and cognitive needs of the children specifically. To be effective, programs should be highly structured and should teach parents behavior management techniques that can be used in the home.

Individual differences in the children partly predict outcome: higher IQ, and the presence of communicative language by the age of 5 are positive prognostic signs.

The recent trend in special education has been strongly in favor of various forms of “mainstreaming, . . . . integration,” and “inclusion,” in which the child attends a class that is composed of a mixed group of special needs and typical peers, or of mainly typical peers, for part or all of the school day, sometimes with a one-on-one aide to facilitate participation. Although research has shown that exposure to normal peers can promote social behavior, the degree to which a severely autistic child can benefit from inclusion in a regular classroom remains to be demonstrated. It is clinically obvious that at least some autistic children need more intensive one-on-one teaching than is available in a mainstream setting before they can benefit from the teaching and social opportunities in a regular class.

In addition to special education or behavioral treatment, the autistic child often needs additional speech and language therapy, occupational therapy, and adapted physical education.

Clinicians must also help families to obtain other necessary services, such as respite care, extended day programs, and summer programs to prevent the behavioral and cognitive regression that can occur. They may also be able to suggest appropriate leisure activities, such as gymnastics, swimming, or play or social groups, that can provide constructive ways to spend after-school hours and opportunities for social interaction with typical children, and can promote self-esteem.

Prescription of therapies and services for the autistic individual must always include sensitivity to the often devastating effect of the disability on the family. Social support from other affected families, and keeping abreast of the latest developments in treatment and other research can help families manage their affected children and their own emotional reactions. The Autism Society of America publishes a regular newsletter with much information useful to parents; another good source of information for parents and professionals on recent developments in autism is Rimland’s newsletter Autism Research Review International.

Bibliography:

• Bauman, M. L., & Kemper, T. L. (Eds.). (1994). The neurobiology of autism. Baltimore: The Johns Hopkins University Press.
• Dawson, G. (Ed.). (1989). Autism: Nature, diagnosis and treatment. New York: Guilford Press.
• Gillberg, C., & Coleman, M. (1992). The biology of the autistic syndromes (2nd ed.). Clinics in Developmental Medicine, 126. London: Mac Keith Press.
• Rapin, I. (Ed.). (1996). Preschool children with inadequate communication: Developmental language disorder, autism, low IQ. Clinics in Developmental Medicine, 139. London: Mac Keith Press.
• Schopler, E., & Mesibov, G. (Eds.). (1995). Learning and cognition in autism. New York: Plenum Press.
• Schopler, E., Van-Bourgondien, M. E., & Bristol, M. (Eds.). (1993). Preschool issues in autism. New York: Plenum Press.

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Autism Spectrum Disorder and Social Story Research: a Scoping Study of Published, Peer-Reviewed Literature Reviews

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• Published: 24 February 2021
• Volume 9 , pages 21–38, ( 2022 )

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• Louis John Camilleri   ORCID: orcid.org/0000-0001-7747-1108 1 ,
• Katie Maras 1 &
• Mark Brosnan 1  

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Social Stories (SS) is a widely used intervention for children on the autism spectrum. A search of databases (CINAH EBSCO, A+Eductaion, ERIC, Education Source, PsyINFO, PubMed, Science Direct, Scopus, Web of Science, and ABI Inform Global) identified that, since its development over 25 years ago, the research exploring SS has been reviewed 17 times. These reviews include synthesis of literature; systematic reviews, meta-analyses; comparative reviews; and descriptive reviews. A scoping review of these 17 literature reviews identified 5 major themes: (1) research design of SS studies, (2) effectiveness of SS, (3) factors influencing outcomes of SSs, (4) social validity of SS interventions, and (5) maintenance and generalisation of SS outcomes. Future recommendations related to SS research were also identified.

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Introduction

Autism spectrum disorder (ASD) is a set of neurodevelopmental disorders characterised by a deficit in social communication, social behaviours and restrictive and repetitive behaviours, activities, or interests (American Psychiatric Association 2013 ). Based on epidemiological studies conducted over the past 40 years, the prevalence of ASD appears to be increasing globally (WHO 2020 ). Recent studies indicate that ASD has an estimated prevalence rate of 1 in 54, with 4.3 of these being male for every one female diagnosed, among children aged 8 years in the USA (Maenner et al. 2020 ).

Autism has a significant and persistent impact on the lives of those receiving a diagnosis as well as their families (Begum and Mamin 2019 ). Also, in financial terms, the cost of supporting children with ASDs is estimated to be £2.7 billion each year in the UK alone (Knapp et al. 2009 ). The financial demands, as well as the persistent and the pervasive impact of ASD on a person’s current and future well-being, highlight the importance of providing support, and Social Stories™ is a widely used intervention that is liked by professionals and acceptable to children on the autism spectrum and their families.

Social Stories

The Social Story™ (SS) intervention was developed for, and is used frequently to assist, children with autism spectrum disorder (Kokina and Kern 2010 ; Pane et al. 2015 ). SS are narratives consisting of personalised text and illustrations. The intervention was introduced by Gray and Garand ( 1993 ) to provide individuals with ASD with the information they may need to learn new information and to understand and function appropriately in different social situations. Gray and Garand ( 1993 ) originally recommended Social Stories™ to be used only with higher functioning verbal pupils and that the entire story should be presented on a single sheet of paper without other visual distractions. Over time, some of these recommendations, particularly related to story style and format, have changed (Gray 1998 , 2004 , 2010 , 2015 ; Gray and Garand 1993 ). Social Stories have become a widely used intervention due to their low cost and accessibility, as well as their capacity to address parents’ support needs, such as managing challenging behaviour (Derguy et al. 2015 ; Wahman et al. 2019 ). Given the widely used nature of the intervention, as well as the variability in the recommendations for how the intervention should be delivered over the 25 years since it was developed, professionals must follow evidence-based practice and recommendations. This should ensure that the intervention is sound, and delivered appropriately (Suhrheinrich et al. 2014 ; Will et al. 2018 ). However, despite decades of research, there is still a question as to whether or not SS interventions should be considered an evidenced-based practice (e.g. Test et al. 2011 ).

Evidence-Based Practice

Intervention literature moves quickly, and so does evidence-based practice, which is an active and dynamic concept (Wong et al. 2015 ). The Canadian Psychological Association Task Force on Evidence-Based Practice of Psychological Treatments (Dozois et al. 2012 ) defines evidence-based practice (EBP) as the conscientious, explicit and judicious application of the best available research evidence to inform clinical practice and service delivery. Contrariwise, the use of treatments that are based on poor-quality research tend to waste time and money, and “prey upon the emotional vulnerability of parents and caregivers” (Zane et al. 2008 , p. 44). Reports by the National Clearinghouse on Autism Evidence and Practice Review Team (Odom et al. 2010 ; Steinbrenner et al. 2020 ), which aimed to document possible new EBPs whilst continuing to validate existing EBPs, failed to define the SS intervention as an EBP. However, they placed Social Narratives within the EPB category. In this case, Social Narratives were defined as “interventions that describe social situations in order to highlight relevant features of a target behaviour” (p. 29). Here Social Narratives were not considered “tantamount” to Carol Gray’s Social Stories™ ( 1993 ); rather, they were defined as a distinct type of narrative. Nevertheless, they were deemed to “fit” within the Social Narratives category. Nonetheless, these conclusions were challenged by Zimmerman and Ledford ( 2017 ) who report variable outcomes and absence of a sufficient number of rigorous studies on Social Narratives. They also advocate for professionals to be cautious with the use of social narratives in isolation for children.

Purpose of the Current Review

Clinical observation, qualitative research, single-subject research (SSR), and randomised control trials (RCTs) are amongst the research designs that can contribute towards an “evidence base” (APA 2006 ). However, most of the published research on SSs that has been undertaken has been within “the constraints of a wholly positivist or quantitative paradigm” (Styles 2011 , p.424). Very few descriptive and qualitative research designs have been published. Studies such as Sandt ( 2008 )—who presents a descriptive report that explains how the author used a SS to help students with autism participate in physical education (PE) lessons—or Smith ( 2001 )—who examined the impact on children’s social behaviour of a two-session workshop for groups of parents and teacher—provide descriptive evidence about the effectiveness of SSs. Nevertheless, although useful, such evidence could be considered anecdotal, particularly when considering the effectiveness—i.e. the degree of beneficial effect in real world clinical practice (Godwin et al. 2003 )—of the intervention.

Several reviews of literature, in the form of systematic reviews, meta-analysis, and narrative reviews, have been published, all of which contribute towards the current knowledge base on SSs. An increase in the quality of the experimental research over time has been noted by a number of these reviews, such as Test et al. ( 2011 ). However, the extent, range, and nature of research activity remains unclear, whist the question of efficacy remains unanswered, especially because of the high variability in research quality that these reviews have identified. Thus, the purpose of the current review was to provide up-to-date information about the current state of SS research, with a specific focus on the effectiveness of SS interventions and factors which influence outcomes. In turn, outcomes of these findings could contribute further to the debate of whether or not SSs should be considered an EBP.

As reviews of SS already exist, the aim of the present study was not to conduct yet another literature review of one form or another, but rather to conduct a scoping review of the existing reviews. A scoping review is an exercise in mapping the existing literature (Ehrich et al. 2002 ). An adapted version of the scoping process outlined by Arksey and O’Malley ( 2005 ) was utilised for this review. This entailed (1) the identification of the research aims; (2) the searching for relevant studies; (3) the systematic selection of studies; (4) the charting of the data; and (5) the presentation of the results.

Identifying Relevant Studies

The electronic databases searched were CINAH EBSCO, A+Eductaion (Informit), ERIC, Education Source, PsyINFO, PubMed, Science Direct, Scopus, Web of Science, and ABI Inform Global. The search was limited to English language publications. Search terms used were “Social Story” and “Social Stories”. The terms were combined using the Boolean operand “OR” and across strings using the Boolean operand “AND”. The publication date was not restricted. The search results were managed and analysed using EndNote™ X9 (Endnote 2013 ).

Study Eligibility and Selection

The objective of the initial search was to investigate the current state of research on SS. The search that was informed by this goal yielded 459 citations following the removal of duplicates and the exclusion of citations that were not in English, were not peer-reviewed, were not related to ASD, and that were not about SS research. Titles and keywords of the remaining articles were further screened in more detail. Autism was not included in the original search terms as there are a wide range of potential variations and reading the titles and keywords ensured that the relevant studies were not erroneously excluded. This resulted in 119 full-text articles. The reading of these articles highlighted that they were already included in several reviews of literature that ranged from synthesis of literature; systematic reviews; meta-analyses; comparative reviews; and descriptive reviews. The publication dates of these articles ranged from 2004 to 2019. Thus, this scoping review included exclusively peer-reviewed reviews of literature. The final number of articles that met the inclusion criteria, and that were included in the current scoping review, was 17. The study search and selection process are presented in Fig.  1 .

PRISMA flow diagram for scoping review

The search results were analysed in terms of the aims identified for this scoping review. An inductive, data-driven, analysis was carried out to identify themes that could appraise the current state of SS research. A deductive analysis, which aimed to map the elements reported in the reviews of literature that specifically focused on outcomes (i.e. effectiveness of SS interventions) and factors which influence outcomes, was also carried out. NVIVO-12 software (QRS International 1999 ) was employed for this stage of the review, whilst a semantic content analysis of the data, as described by Braun and Clarke ( 2006 ), led to the coding of data according to the pre-defined research aims. Descriptive characteristics including title, author(s), year of publication, type of review, inclusion criteria, and the number of studies included in the review were extracted and organised. Also, key findings and conclusions, as well as recommendations for future research, were added to descriptive information to create detailed extraction tables (Tables  1 , 2 , 3 , and 4 ).

The 17 reviews included in this scoping study reported on a total of 120 individual studies focusing on SSs, which were conducted from 1995 to 2018. Some of these articles are included in more than one of the research syntheses included in this scoping review. Two themes were identified, as a result of the deductive analysis, whilst a further 3 themes were identified as a result of the inductive analysis of the 17 articles. The themes are (1) research design of SS research, (2) effectiveness of SS, (3) factors influencing outcomes of SSs, (4) social validity of goals of SS interventions, and (5) maintenance and generalisation of SS intervention outcomes. The “factors influencing outcomes” category consist of 2 further subthemes, which are (3.1) environmental factors and (3.2) within-child factors. These themes and subthemes are organised in hierarchical order (see Fig.  2 ) which illustrates their relevance in relation to the research objectives of this scoping review.

Themes identified from inductive and deductive analysis of articles that were included in the scoping review

1) Research design

The research design most frequently encountered in SS research is single-subject research (Ali and Frederickson 2006 ; Bucholz 2012 ). The only exception to this is Karkhaneh et al.’s ( 2010 ) review where only randomised control trials (RCTs) and controlled clinical trials (CCT) are included. Table 2 presents an overview of the different research designs that have been included in the reviews. AB designs (where “A” describes a baseline phase and “B” an intervention phase) feature regularly in reviews conducted before 2012. After 2012, the reviews highlight the recurrent use of studies that, unlike AB designs, could see threats to internal validity, such as variations of ABAB designs, alternating treatment designs, and multiple-baseline designs (which involves the concurrent measurement of two or more behaviours in a baseline condition, followed by the application of the treatment variable to one of the behaviours).

The single-case research design quality utilised in SS research has been a persistent concern (McGill et al. 2015 ). The quality of individual studies included in any review will determine the quality of the outcomes of a review, and will consequently impact the strength and validity of the claims made by that review (Schlosser et al. 2007 ). The quality of single-case research should be rigorously analysed for conclusions on causal relationships among interventions and outcomes to be determined. Tools for quality appraisal of single-case research guides are relatively novel (Lobo et al. 2017 ), but are available in the works of Horner et al. ( 2005 ) and What Words Clearinghouse Standards (Kratochwill et al. 2013 ).

From the 17 reviews selected, only 8 used quality appraisal criteria of studies they reviewed. Reynhout and Carter ( 2011 ), Test et al. ( 2011 ), and Mayton et al. ( 2013 ) utilised Horner et al. ( 2005 ) criteria. McGill et al. ( 2015 ) and Qi et al. ( 2018 ) utilised What Works Clearinghouse Standards (WWC). Karal and Wolfe ( 2018 ) and Aldabas ( 2019 ) used National Autism Centre’s (NAC 2015 ) Scientific Merit Rating Scale (SMRS) as a means of objectively assessing if the methods used in each study were sufficiently rigorous to determine whether or not SS intervention was effective for participants on the autism spectrum. Karkhaneh et al. ( 2010 ) only reviewed RCT and CCTs, and thus utilised the Jadad Scale (Jadad et al. 1996 ) which is a validated scale that is used for assessing the quality of reports of RCTs.

Nine studies failed to evaluate the methodological quality of the studies that were included in the review. These included Sansosti et al. ( 2004 ); Kokina and Kern ( 2010 ); Reynhout and Carter ( 2006 ); Styles ( 2011 ); Bucholz ( 2012 ); Rhodes ( 2014 ); Saad ( 2016 ); and Rodríguez et al. ( 2019 ).

With the introduction of standards in 2005 (Horner et al. 2005 ) as well as WWC standards (Kratochwill et al. 2013 ), an increase in study quality has been reported. In McGill et al.’s ( 2015 ) review, the authors explain how only one study, published from 1995 to 2004 included in their review, met all seven of WWC’s design standards. In contrast, eight studies published from 2005 to 2012 met all seven of the design standards. Overall, the 15% increase in average indicators met as well as the nominal increase in the number of studies meeting all of the standards across the periods provides some evidence of systematic improvements in single-case research quality over time.

2) Effectiveness of SS

The main focus of the reviews of literature that were included in this scoping study was to investigate the effectiveness of SS intervention. Sansosti et al. ( 2004 ) concluded that the empirical foundation regarding the effectiveness of Social Stories is limited (Sansosti et al. 2004 ). Kokina and Kern ( 2010 ) argue that their findings are indicative of questionable effectiveness of Social Story interventions for students with ASD (Kokina and Kern 2010 ). Reynhout and Carter ( 2006 ); Sansosti et al. ( 2004 ); and Bucholz ( 2012 ) argue that the effects of SS are highly variable. More recent reviews, such as Karal and Wolfe ( 2018 ); Qi et al. ( 2018 ); and Aldabas ( 2019 ), indicate the SS research published since 2013 has increased in quality and has also reported relatively higher effectiveness ratings.

Mean difference effect size statistic was used to interpret outcome of intervention using group designs (0.80 = large effect size, 0.50 = moderate, and 0.20 = small). Visual analysis ratings (VARs) (+ 2 significant decrease in target behaviours from baseline, + 1 moderate decrease in target behaviours from baseline, 0 little to no decrease in target behaviours from baseline, − 1 moderate increase in target behaviours from baseline, − 2 significant increases in target behaviours from baseline), percentage of non-overlapping data (PND) statistic (PNDs > 80 are indicative of a strong effect, 60 to 79 is a moderate effect, and PNDs < 60 indicate negligible effect), improvement rate difference (IRD) (range 0 to 1.00, > 0.75 indicate very large effect sizes, scores between 0.70 and 0.75 indicate large, scores between 0.51 and 0.70 indicate moderate, and scores less than 0.50 indicate small effect sizes), and points exceeding the median (PEM) (range 0 to 1. < 0.7 reflects an intervention that is not effective, PEM of 0.7 to 0.9 reflects moderate effectiveness, PEM of 0.9 to 1 reflects a highly effective treatment) were used to interpret the efficacy of SS intervention in single-case experimental designs. Whilst it is claimed that the IRD metric is the strongest validated metric, when compared to PND and PEM (Parker et al. 2007 ), nevertheless, IRD seems to have been employed to a limited extent whilst PND is the most used metric in the reviews.

Reynhout and Carter ( 2006 ) obtained a Mean PND of 43 (range 16–95) which indicates that SS intervention is ineffective according to PND evaluative criteria (refer to Scruggs and Mastropieri 1998 , 2001 ; Scruggs et al. 1987 ). Kokina and Kern ( 2010 ) report a mean PND score of 60% (range, 11–100%) for SS interventions. This score places SS in the low/questionable effectiveness category according to Scruggs and Mastropieri ( 1998 ). Reynhout and Carter ( 2011 ) report on PND (mean 51, range 0–100, SD = 30) and IRD (mean 0.57, range 0–1, SD = 0.26) metrics and suggest that the SS intervention is only mildly effective. On the other hand, the PEM metric resulted in a mean score of 72% (range 0–100, SD 26), which is indicative of moderate effectiveness.

In Test et al.’s ( 2011 ) review, PNDs could be calculated only for 10 of the 28 studies reviewed because the research design utilised meant that a functional relation could not be determined. However, the PND scores for 6 of the studies indicated “very effective” or “effective” outcomes, whilst the findings of the remaining studies were indicative of questionable or ineffective outcomes.

McGill et al. ( 2015 ) obtained an overall mean VAR of 0.68 (range 0 to + 2) and a mean PND of 51% (range 0–100%). Such scores are indicative of small-to-negligible effects. However, the weighted effect size estimator of 0.79 indicated moderate-to-large treatment effects. Karal and Wolfe ( 2018 ) obtained an average IRD score of 0.61 which is indicative of moderate effectiveness of SS interventions.

Qi et al. ( 2018 ) found a median PND value of 70%, which, contrary to findings from previous reviews, indicate that overall SS interventions are deemed effective for individuals with ASD. Similarly, Aldabas ( 2019 ) reported a mean effect size of 0.70, which is a high effect size and suggests that SS interventions are effective for individuals with ASD.

3) Factors Influencing Outcomes

Effectiveness of SS intervention may vary depending on the environment as well as within-child variables (Rust and Smith 2006 ). Overall effect sizes indicate that social stories are moderately effective, but specific intervention characteristics are associated with stronger outcomes (Karal and Wolfe 2018 ). The factors that have been identified to influence the outcomes of a SS intervention could be grouped into two broad categories: environmental factors and within-child factors (refer to Fig. 2 ). Within-child factors refer to characteristics of the individual participants. Environmental factors refer to a set of variables related to the research context and setting which are not participant related.

Description of participant characteristics is highly variable across SS literature. The poor or limited descriptions of participants are reported to make it difficult to determine if any specific participant characteristics were associated with intervention effectiveness. However, based on the articles included in this scoping study, age and gender, reading ability, verbal comprehension, and intellectual ability were within-child variables that were hypothesised to potentially influence outcomes of SS research. Environmental factors refer to a set of variables related to the research context and setting which are not participant related. Rather such factors are deemed to be pertinent to the environment in which the research was carried out. These factors are intervention setting, delivery of the intervention, modality, Gray’s criteria, comprehension checks, treatment packages, treatment intensity, and treatment integrity.

Age and Gender

The analysis of the reviews synthesised in this scoping review indicated that each review included 22 to 227 participants (refer to Table 4 ). Most of these participants were males. The ages of these participants ranged from 2 to 57 years. However, the more common age range was that of 3 to 15 years. Karal and Wolfe’s ( 2018 ) findings support and highlight the positive effects of SSs for school-aged autistic children whose ages range from 8 to 11 years. Mayton et al.’s ( 2013 ) findings also support the view that the effect of SSs is lower in studies with participants older than age 9.

Reading Ability

Rhodes ( 2014 ) and Reynhout and Carter ( 2006 ) propose that a child’s reading ability is a characteristic that could be considered a confounding variable. Nevertheless, it seems that, from the few studies reviewed that have included standardised achievement scores (such as Bledsoe et al. 2003 ; Brownell 2002 ; Kuoch and Mirenda 2003 ; Staley 2002 ; Thiemann and Goldstein 2001 ), the reading ability does not have a significant impact on the outcome of the intervention (Rhodes 2014 ).

Verbal Comprehension

Karkhaneh et al. ( 2010 ), Rhodes ( 2014 ), and Styles ( 2011 ) include in their reviews an article by Quirmbach et al. ( 2009 ) which highlights how a verbal comprehension index of at least 68 or greater on the Weschler Intelligence Scales for Children 4th Edition (Wechsler 2003 ) was associated with better effectiveness outcomes.

Intellectual Ability

Gray and Garand’s ( 1993 ) original focus was for SS to be used with higher functioning individuals who possess basic language ability. However, Kokina and Kern ( 2010 ) report that the effects of SS intervention seem to be somewhat higher for participants with lower cognitive ability than for individuals with high or average intelligence. Nevertheless, this factor is one which is underresearched, as the intellectual ability of individuals participating in SS research is rarely included in the participants’ description (Reynhout and Carter 2006 ).

Intervention Setting

Most of the studies conducted were reported to have been carried out in school settings (Aldabas 2019 ; Qi et al. 2018 ). More specifically, most deployed SS in structured classroom or small group settings (Styles 2011 ). The setting where the SS intervention is carried out is reported to impact intervention outcome. Interventions in general education reportedly produce larger effects when compared to home settings (Kokina and Kern 2010 ; McGill et al. 2015 ).

Intervention Delivery

McGill et al. ( 2015 ) reported that SS interventions delivered by researchers produce larger effects than those delivered by teachers. Rodríguez et al. ( 2019 ) report that whilst the majority of studies included in their review report on SS intervention that is conducted in schools by teachers, the results show a promising and positive effect of the intervention if it is carried out by people such as family members and teachers.

Intervention Modality

Combining visual elements with verbal cues is a common practice in SS interventions. Visual elements which have been included in SS interventions are photographs of participants, peers, and the environment; computer-presented social stories; and video feedback. Texts, graphics, animations, images, videos, and sounds are also reported to have been used in SS interventions delivered through technological aids (Sani Bozkurt et al. 2017 ).

Gray’s Criteria

Criteria for SS interventions were officially introduced by Carol Gray in 2004. In 2010, and subsequently, in 2014, these 10 criteria were revised. Gray’s criteria are reported to have been developed with learning characteristics of people with ASD in mind (Gray 2004 ). However, it is unclear whether a SS intervention’s conformity with such criteria is less or more effective than interventions that do not. Reynhout and Carter’s ( 2006 ) analysis concluded that from the 16 studies before 2004, a number of these deviated considerably from the criteria prescribed by Gray ( 2003 ). However, outcome measures indicated that a deviation from Gray’s criteria did not negatively impact PND.

Test et al.’s ( 2011 ) review reported that 75% of the studies included in their review stated that they had used Gray’s Criteria for developing SS interventions. They report that of the five out of the six studies that yielded “very effective” or “effective” PND scores used Gray’s criteria. On the other hand, both studies with intervention PNDs of 0% (i.e. not effective) also reported using Gray’s criteria. In his review of literature, Aldabas ( 2019 ) recommends practitioners to construct sound SSs through the implementation of sound guidelines such as Gray’s. However, similar to Reynhout and Carter ( 2006 ), outcomes, in terms of effect size, indicate that adherence to Gray’s criteria alone may not necessarily guarantee effectiveness. This seems to indicate that the relation between Gray’s criteria and SS effectiveness is unclear.

Comprehension Checks

Comprehension checks may be an important part of the implementation of SS intervention. Indeed, early guidelines by Gray and Garand ( 1993 ) required comprehension check to be a fixed component of the intervention. This to prevent inaccurate interpretation of the situation. In Reynhout and Carter’s ( 2006 ) review, it is reported that stories where authors reported a comprehension component yielded a higher mean PND than those who did not. Similarly, in Kokina and Kern’s ( 2010 ) meta-analysis, lower PND scores were obtained for the studies that did not involve comprehension checks. Furthermore, Styles ( 2011 ) reports that in studies where SS were read regularly, as the participant’s comprehension of the SS improved, so did the reported effectiveness of the intervention.

Treatment Packages

Ali and Frederickson ( 2006 ) report that the evidence base in 2006 suggested that SS interventions can be used alone or can be supported by combining it with other approaches. The use of SS interventions along with other approaches, such as prompting or reinforcement strategies, is reported in 3 of the reviews. Test et al. ( 2011 ) report that in 17 out of 28 studies, SS treatment packages have been evaluated. That indicates that 60% of the studies were not evaluating SS outcomes, but SS in combination with other interventions. Test et al. ( 2011 ) also report that in six of the studies that were included in their review that had “very effective” or “effective” PNDs, only two investigated Social Stories only whilst four studies investigated treatment packages that included Social Stories. The need for clarity on what is exactly being investigated (i.e. SSs alone vs treatment package that include SSs), as well as the need for more research on the efficacy of SS as part of a comprehensive treatment package, has been highlighted in a number of reviews such as Kokina and Kern ( 2010 ), McGill et al. ( 2015 ), and Aldabas ( 2019 ).

Treatment Intensity

Treatment intensity refers to the number of social stories an individual is exposed to, and the number of times it is read every day. Karkhaneh et al. ( 2010 ) remark that some studies describe treatment frequency and duration, but do not explore treatment dose for short-term and long-term maintenance. Kokina and Kern’s ( 2010 ) review notes that in the few studies that used several Social Stories per child, a higher treatment effect was reported. This could indicate that higher treatment intensity is associated with improved outcomes.

Treatment Integrity

Treatment integrity is a term that refers to the degree to which interventions are implemented as intended (Gresham 1989 ). Sansosti et al. ( 2004 ) reports that few studies exist that have assessed treatment integrity or procedural reliability. Test et al. ( 2011 ) reports that 37.5% of studies published from 1995 to 2004 included procedural reliability, whilst 58.3% of studies published from 2005 to 2007 measured procedural reliability. Test et al.’s ( 2011 ) findings suggest that measures of treatment integrity may be associated with intervention effectiveness. Similarly, Bucholz ( 2012 ) reports that the ineffectiveness of SS intervention may be due to a lack of treatment integrity. Qi et al. ( 2018 ) report that from the studies that reported treatment fidelity, the median PND was 75%, and the means of PEM, PEM-T (i.e. Percentage of data exceeding the median trend line), and PDO 2 (i.e. Pairwise data overlap squared) were 93%, 100%, and 92%, respectively. For studies that did not report fidelity, the median PND was 50%. Nevertheless, the lack of consistent reporting of treatment fidelity makes it difficult to conclude with a degree of certainty that treatment fidelity could influence the effectiveness of the intervention. Interestingly, in Rhodes’s ( 2014 ) review, the two studies that had unsuccessful outcomes had treatment integrity of 100%.

4) Social Validity

Social validity refers to the observed social significance of the goals selected, the acceptability of procedures employed, and the effectiveness of the outcomes produced in interventions as perceived by service users (Snodgrass et al. 2018 ). Sansosti ( 2004 ) reports that most of the studies published at the time did not report on social validity. This made it difficult to determine whether caregivers and/or educators perceive such interventions to be acceptable for children with ASD. The lack of reporting on qualitative research is also highlighted in Reynhout and Carter’s ( 2006 ) review—where only three of the sixteen studies reviewed examined an aspect of social validity—and also by Test et al. ( 2011 ).

Reynhout and Carter ( 2011 ) report on formal measures of social validity made using Martens et al.’s ( 1985 ) Intervention Rating Profile—15, and other or other ad hoc scales aimed at measuring family members’ reported perceptions. Similar measures were reported in 53% of the studies in Reynhout and Carter’s ( 2011 ) review, and in 59% of the studies included in McGill et al.’s ( 2015 ) review.

In more recent reviews, such as those carried out by Aldabas ( 2019 ) and Rodríguez et al. ( 2019 ), the authors have concluded that the increased reporting on social validity by teachers found SS intervention to be one of the most effective methods to teach new behaviours and decrease inappropriate behaviours in schools. Furthermore, Rodríguez et al. ( 2019 ) report that SS intervention is a tool with great reported acceptability from professionals, family members, and people with ASD themselves.

5) Maintenance and Generalisation

It is clear, from the studies included in the reviews, that single-case research is focusing mostly on determining the functional relationship between SS intervention and behavioural change. However, this emphasis has shifted gradually to include response maintenance as well as generalisability of behaviour change. The term maintenance refers to the measurement of effectiveness when the intervention is withdrawn, whilst the term generalisation refers to the effect of the intervention outside the direct environment, or context, of the study.

Reviews by Sansosti et al. ( 2004 ) and Ali and Frederickson ( 2006 ) highlight the lack of programming for maintenance and generalisation in SS research that was published at the time. Reynhout and Carter ( 2006 ) also mention that maintenance and generalisation are inadequately addressed in the studies included in their review. This pattern of methodological shortcomings was again reported by Karkhaneh et al. ( 2010 ), Kokina and Kern ( 2010 ), Reynhout and Carter ( 2011 ), Test et al. ( 2011 ), and Bucholz ( 2012 ). These reviews emphasise the importance of including, within the research design, evaluation of response maintenance.

Styles’s ( 2011 ) descriptive review, however, argues that whilst the concept of maintenance of effects after the cessation of the intervention is important to research, the concept of generalisation is not an adequate measure of the effectiveness of SS. He argues that the goal of the SS intervention is not generalisation. Rather, SS interventions are context- and situation-specific. Thus, whilst it would be desirable to have learnt behaviours generalised beyond the specific context, the scope of SS, in the first place, is more context-specific. Nevertheless, Styles ( 2011 ) maintains that there is insufficient evidence to suggest that positive outcomes are routinely maintained after SS has been withdrawn. Such conclusions were also reached by Mayton et al. ( 2013 ) and Rhodes ( 2014 ), who argue that it is unclear whether maintenance of behaviour is dependent upon continuing the SS intervention or not.

Qi et al. ( 2018 ) also came to a similar conclusion with regard to maintenance and generalisation effects. From the studies included in their review, only 7 of the 22 studies provided generalisation data to other settings. However, from these limited studies, it is suggested that SS intervention was effective or very effective in the maintenance of target skills.

The scoping review produced a comprehensive synthesis of research on SS interventions as reported through the various literature reviews identified. The empirical research on SS interventions is relatively large and is mostly based on single-subject research (SSR) designs. The examination of the effectiveness of interventions is the area in which SSR studies are most well-represented (Morgan and Morgan 2001 ). SSR is experimental and aims to document causal, or functional, relationships between independent and dependent variables (Horner et al. 2005 ). Participants in a single-subject experiment provide their own control data for comparison in a within-subject rather than a between-subject design. Such controls are seen to be threats to internal validity (Krasny-Pacini and Evans 2018 ).

Sansosti et al. ( 2004 ) published the first review that focuses on SS. The objective of their research synthesis was to evaluate the effectiveness of SS intervention. According to Sansosti et al. ( 2004 ), AB designs presented limited control over threats to internal validity in SSR studies that were carried out. Furthermore, they argue that ABA or ABAB designs are also not adequate to ascertain the effectiveness of social stories. The reason for this is related to the withdrawal of the intervention, an aspect of the design that could be harmful to the participant since it is unsafe for participants to return to the baseline phase of the intervention (Reynolds 2008 ). Secondly, the “reversal” of the behaviour to baseline conditions once the SS intervention is withdrawn may not even be possible since the objective of a SS is to attain long-standing behavioural change. Thus, when the target of the SS intervention is the decrease of inappropriate behaviours, the return to baseline conditions of the targeted behaviour could also be interpreted as an ineffective intervention outcome. Nevertheless, the use of single-case experiments, particularly multiple-baseline design, seems to have presented researchers with the opportunity to see to the issue of heterogeneity in autism symptomology as well as to the issues of ethics and “irreversibility”.

The strength of a SS intervention is indeed its “customisability”. Thus, whilst every intervention is based on similar principals, no one social story is the same as another. Furthermore, great variability in the administration can lead to great variability in terms of outcomes. One of these “variables” is intervention setting. The majority of studies are carried out in schools and structured classroom setting. Furthermore, the number of SS interventions being carried out by researchers and professionals outnumber the interventions carried out by teachers. Parents and guardians are those who figure the least in literature. This could be a result of the poor treatment fidelity reported in studies that centre around parents. Nevertheless, the small sample of studies in which parents administered the intervention has reported promising results. Yet, outcomes of such studies could have been confounded by administration procedures that might have deviated from the standard, and in so doing delivering some sort of treatment packages that included verbal prompts, encouragement, and reinforcement.

Reports, such as McGill et al.’s ( 2015 ), of larger effect sizes being reported in interventions that were delivered by researchers should lead to questioning the accessibility of the intervention, i.e. whilst it is reported that social stories are largely popular as a result of their “ease of use”, McGill et al.’s ( 2015 ) report seems to indicate that outcomes of the administration are more positive in settings where the administrators are highly trained individuals. Thus, this finding could challenge the notion that SSs are easy to create and to use, as the outcomes are tied to professional preparation and knowledge of the intervention.

The need to adhere, or not, to Gray’s ( 2004 ) criteria for writing social stories is also a confounding variable. The evidence seems to indicate that whilst adherence to Gray’s criteria could yield sound SSs, adherence to these criteria alone may not guarantee effectiveness. Furthermore, the lack of reporting on the use or adherence to Gray’s Criteria has been highlighted in most of the reviews. This limits the conclusions that can be made on this issue.

The issue of the modality of delivery also seems to be central to the question of SS intervention effectiveness. Modality, in this case, refers to the mode of administration (using electronic devices or print) and also refers to the inclusion of photos, text, graphics, animations, and sounds. The literature identified does not attempt to answer the question of which modality produces more positive outcomes. However, Kokina and Kern ( 2010 ) conclude that Functional Behavioural Analysis (FBA) could guide Social Story interventions. Thus, it could be conceivable to argue that knowledge of the individual’s distinctive characteristics—which include intellectual and verbal abilities, language (expressive and receptive) skills, behaviours, needs, preferences, strengths and weaknesses—could be important when administering SS interventions.

Overall, it seems that the question of “is a SS intervention effective for children with autism” is still not adequately answered in literature. The finding that the large majority of studies consist of male participants also puts into questions the effectiveness of SS interventions with female participants. Early reviews, e.g. Sansosti ( 2004 ) indicate that the evidence of the effectiveness of SS is limited. The PND scores reported by various reviews that are synthesised in this study are variable. These scores range from a mean PND of 43 (Reynhout and Carter 2006 ) to median PND scores of 70 (Qi et al. 2018 ). These scores are indicative of effects which range from negligible to moderate, respectively. These scores could be a result of the poor-quality SS research. There has been a reported improvement in the quality of the research since 1995, especially since the introduction of Horner et al.’s ( 2005 ) evaluative criteria for single-case research, National Autism Center’s ( 2009 ) Scientific Merit Rating Scale (SMRS), and Kratochwill et al.’s ( 2013 ) WWC standards. However, the variability in such quality suggests that notwithstanding the 120 studies included in the reviews, the evidence to support the effectiveness, or not, of the intervention is weak.

Furthermore, PND scores appear to be the most frequently used metric to evaluate the effect of the SS intervention. However, the PND metric is not necessarily the best, or even the only, way to measure outcomes of single-case research. Whilst it is claimed that the IRD metric is the strongest validated metric when compared to PND and PEM (Parker et al. 2009 ), nevertheless, IRD seems to have been employed to a limited extent to measure outcomes, whilst PND is the most used metric in the reviews. It could be argued that PND lacks sensitivity or discrimination ability (Parker et al. 2007 ). Thus, the procedure used to “measure” the effectiveness of SS intervention could be rethought.

Finally, the question of whether or not SS interventions could be considered an EPB is not answered in the literature. Whilst promising, the most frequent reply to this question is that “further research is needed on the effectiveness of social stories”.

Recommendations for Future Research

Outcomes of this scoping review indicate that notwithstanding the relatively large body of research, the great variability in reported outcomes of SS interventions is substantial. The improvement in the quality of research has been noted in the reviews following 2012. This could be attributed to the introduction of guidelines such as the NAC and WWC research guidelines for SSR. Together with this reported improvement, more positive outcomes have also been recorded. However, the implications of this scoping review go beyond the mere cataloguing of reported outcomes. Rather, the synthesis of literature has implications on aspects of research that should be seen by future researchers to continue to improve quality as well as contribute towards answering the question of whether or not SS interventions could be considered an EBP.

As recommended by both NAC and WWC guidelines, the variables that are reported to possibly confound/effect intervention outcomes should be included and more thoroughly described in research reports. These variables include (1) SS adherence to Gray’s criteria, (2) modality of social story delivery, (3) data on maintenance and generalisation of behaviours/skills, (4) number of sessions carried out, (5) goal of intervention, (6) intervention setting, (7) information regarding treatment fidelity, and (8) information on who carries out the intervention.

Several considerations should also be made when reporting on participants’ characteristics. Details, such as age, gender, intellectual ability, reading ability, and severity of difficulties should be adequately reported. Furthermore, Functional Behaviour Analysis (LaBelle and Charlop-Christy 2002 ) should also be carried out to ascertain the frequency and intensity of the behaviours that are going to be targeted. A better understanding of the target behaviour could also yield more apposite stories. Such information could also inform the social validity of the intervention, i.e. the degree to which the goal is important. To inform further this aspect of research, qualitative research strategies could also be employed, as well as quantitative measures of peers’ behaviours aimed to compare changes in behaviour to neurotypical children’s behaviour. Such measures should be put in place to see threats to the internal validity of the research design.

The issue of gender in SS research should also be taken into consideration, since most of the literature available focuses on males, as most of those diagnosed with autism are male. Future research should be sensitive to potential gender differences. Finally, the issue of which measure should be used to summarise and evaluate SSR outcomes is still relevant. Thus, whilst it is argued, in this paper, that PND is not necessarily the most adequate standard to evaluate SSR, the use of other outcome metrics which include, but are not limited to, VAR, IRD, PEM, PAND (see Parker et al. 2011 ) should be considered. Thus, researchers should present original data of baseline and intervention observations, both graphically and numerically, in the published report to ensure the accurate calculations of the various metrics.

Limitations

Several limitations associated with this review must be recognised. Specifically, findings are limited to databases included in the scoping process, which means that not all available research could have been identified. Also, this study did not include an evaluation of the quality of reviews that were identified and included. Furthermore, two of the reviews, namely Reynhout and Carter ( 2006 ) and Reynhout and Carter ( 2011 ), also included studies with children that were not autistic. These reviews were included because more than 80% of the studies that they included were with participants with autism. Finally, since the scoping review only included synthesis and other reviews of literature, it could have excluded other published research that was published in 2019 and 2020 that had not been included in the identified papers.

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Camilleri, L.J., Maras, K. & Brosnan, M. Autism Spectrum Disorder and Social Story Research: a Scoping Study of Published, Peer-Reviewed Literature Reviews. Rev J Autism Dev Disord 9 , 21–38 (2022). https://doi.org/10.1007/s40489-020-00235-6

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Chapter: 16 conclusions and recommendations.

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16 Conclusions and Recommendations This chapter summarizes the committee’s conclusions about the state of the science in early intervention for children with autistic spectrum disorders and its recommendations for future intervention strategies, pro- grams, policy, and research. The chapter is organized around seven key areas pertaining to educational interventions for young children with autistic spectrum disorders: how the disorders are diagnosed and as- sessed and how prevalent they are; the effect on and role of families; appropriate goals for educational services; characteristics of effective in- terventions and educational programs; public policy approaches to en- suring access to appropriate education; the preparation of educational personnel; and needs for future research. DIAGNOSIS, ASSESSMENT, AND PREVALENCE Conclusions Autism is a developmental disorder of neurobiologic origin that is defined on the basis of behavioral and developmental features. Autism is best characterized as a spectrum of disorders that vary in severity of symptoms, age of onset, and association with other disorders (e.g., mental retardation, specific language delay, epilepsy). The manifestations of au- tism vary considerably across children and within an individual child over time. There is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a 211 

212 EDUCATING CHILDREN WITH AUTISM diagnosis of autism, even though there are strong and consistent com- monalities, especially relative to social deficits. The large constellation of behaviors that define autistic spectrum dis- orders—generally representing deficits in social interaction, verbal and nonverbal communication, and restricted patterns of interest or behav- iors—are clearly and reliably identifiable in very young children to expe- rienced clinicians and educators. However, distinctions among classical autism and atypical autism, pervasive developmental disorder-not other- wise specified (PDD-NOS), and Asperger’s disorder can be arbitrary and are often associated with the presence or severity of handicaps, such as mental retardation and severe language impairment. Identifying narrow categories within autism is necessary for some research purposes; however, the clinical or educational benefit to subclas- sifying autistic spectrum disorders purely by diagnosis is debated. In contrast, individual differences in language development, verbal and non- verbal communication, sensory or motor skills, adaptive behavior, and cognitive abilities have significant effects on behavioral presentation and outcome, and, consequently, have specific implications for educational goals and strategies. Thus, the most important considerations in pro- gramming have to do with the strengths and weaknesses of the indi- vidual child, the age at diagnosis, and early intervention. With adequate time and training, the diagnosis of autistic spectrum disorders can be made reliably in 2-year-olds by professionals experi- enced in the diagnostic assessment of young children with autistic spec- trum disorders. Many families report becoming concerned about their children’s behavior and expressing this concern, usually to health profes- sionals, even before this time. Research is under way to develop reliable methods of identification for even younger ages. Children with autistic spectrum disorders, like children with vision or hearing problems, re- quire early identification and diagnosis to equip them with the skills (e.g., imitation, communication) to benefit from educational services, with some evidence that earlier initiation of specific services for autistic spectrum disorders is associated with greater response to treatment. Thus, well meaning attempts not to label children with formal diagnoses can deprive children of specialized services. There are clear reasons for early identifi- cation of children, even as young as two years of age, within the autism spectrum. Epidemiological studies and service-based reports indicate that the prevalence of autistic spectrum disorders has increased in the last 10 years, in part due to better identification and broader categorization by educators, physicians, and other professionals. There is little doubt that more children are being identified as requiring specific educational inter- ventions for autistic spectrum disorders. This has implications for the provision of services at many levels. Analysis of data from the Office of 

CONCLUSIONS AND RECOMMENDATIONS 213 Special Education Programs, gathered for school-age children since the autism category was recognized in 1991, would support investigation of whether the dramatic increases in the numbers of children served with autistic spectrum disorders are offset by commensurate decreases in other categories in which children with autistic spectrum disorders might have previously been misclassified or whether these dramatic increases have come about for other reasons. Although children with autistic spectrum disorders share some char- acteristics with children who have other developmental disorders and may benefit from many of the same educational techniques, they offer unique challenges to families, teachers, and others who work with them. Their deficits in nonverbal and verbal communication require intense effort and skill even in the teaching of basic information. The unique difficulties in social interaction (e.g., in joint attention) may require more individual guidance than for other children in order to attract and sustain their children’s attention. Moreover, ordinary social exchanges between peers do not usually occur without deliberate planning and ongoing struc- turing by the adults in the child’s environment. The absence of typical friendships and peer relationships affects children’s motivation systems and the meaning of experiences. Appropriate social interactions may be some of the most difficult and important lessons a child with autistic spectrum disorders will learn. In addition, the frequency of behavior problems, such as tantrums and self-stimulatory and aggressive behavior, is high. The need for sys- tematic selection of rewards for many children with autistic spectrum disorders, whose motivation or interests can be limited, requires creativ- ity and continued effort from teachers and parents to maximize the child’s potential. Although general principles of learning and behavior analysis apply to autistic spectrum disorders, familiarity with the specific nature of the disorder should contribute to analysis of the contexts (e.g., commu- nicative and social) of behaviors for individual children and result in more effective programming. For example, conducting a functional as- sessment that considers contexts, and then replacing problem behaviors with more appropriate ways to communicate can be an effective method for reducing problem behaviors. Recommendations 1-1 Because of their shared continuities and their unique social diffi- culties, children with any autistic spectrum disorder (autistic disorder, Asperger’s disorder, atypical autism, PDD-NOS, child- hood disintegrative disorder), regardless of level of severity or function, should be eligible for special educational services within the category of autistic spectrum disorders, as opposed to other 

214 EDUCATING CHILDREN WITH AUTISM terminology used by school systems, such as other health im- paired, social emotionally maladjusted, significantly developmen- tally delayed, or neurologically impaired. 1-2 Identification of autistic spectrum disorders should include a for- mal multidisciplinary evaluation of social behavior, language and nonverbal communication, adaptive behavior, motor skills, atypi- cal behaviors, and cognitive status by a team of professionals experienced with autistic spectrum disorders. An essential part of this evaluation is the systematic gathering of information from parents on their observations and concerns. If the school system cannot carry out such an assessment, the local education author- ity should fund the assessment through external sources. Early diagnosis should be emphasized. Because of variability in early development, younger children with autistic spectrum disorders should receive a follow-up diagnostic and educational assess- ment within one to two years of initial evaluation. 1-3 Professional organizations, with the support of the National Insti- tutes of Health (NIH) and the Department of Education’s Office of Special Education Programs (OSEP), should disseminate infor- mation concerning the nature and range of autistic spectrum dis- orders in young children to all professionals who have contact with children, particularly those who work with infants, toddlers, and preschool children. This information should include the vari- able presentations and patterns of behavior seen in autistic spec- trum disorders from toddlers to school age children. Members of “child find” teams within the early intervention systems, as well as primary care providers, should be trained in identifying the “red flags of autistic spectrum disorders” and the importance and means of early referral for comprehensive diagnostic evaluation. Advocacy groups and relevant federal agencies, as well as profes- sional organizations, should use effective media resources, in- cluding the Internet, to provide information concerning the range of behaviors in autistic spectrum disorders. ROLE OF FAMILIES Conclusions Having a child with an autistic spectrum disorder is a challenge for any family. Involvement of families in the education of young children with autistic spectrum disorders can occur at multiple levels, including advocacy, parents as participating partners in and agents of education or 

CONCLUSIONS AND RECOMMENDATIONS 215 behavior change, and family-centered consideration of the needs and strengths of the family as a unit. Nearly all empirically supported treat- ments reviewed by the committee included a parent component, and most research programs used a parent-training approach. More informa- tion is needed about the benefits of a family-centered orientation or com- bined family-centered and formalized parent training in helping parents. It is well established that parents can learn and successfully apply skills to changing the behavior of their children with autistic spectrum disorders, though little is known about the effects of cultural differences, such as race, ethnicity, and social class, nor about the interactions among family factors, child characteristics, and features of educational interven- tion. For most families, having a child with an autistic spectrum disorder creates added stress. Parents’ use of effective teaching methods can have a significant effect on that stress, as can support from within the family and the community. Parents need access to balanced information about autistic spectrum disorders and the range of appropriate services and technologies in order to carry out their responsibilities. They also need timely information about assessments, educational plans, and the avail- able resources for their children. This information needs to be conveyed to them in a meaningful way that gives them time to prepare to fulfill their roles and responsibilities. In the last ten years the widespread availability of the Internet and media attention to autistic spectrum disorders have increased parents’ knowledge but often conveyed perspectives that were not balanced nor well-supported scientifically. Of crucial importance is the question of how to make information available to parents and to ensure their active role in advocacy for their children’s education. Recommendations 2-1 Parents’ concerns and perspectives should actively help to shape educational planning. Specifically: a. In order for a family to be effective members of the Indi- vidualized Education Plan (IEP) team that plans a child’s educa- tion, the local school system should provide to the parents, at the beginning of the assessment process, written information con- cerning the nature of autistic spectrum disorders and eligibility categories, the range of alternatives within best practices in early education of autistic spectrum disorders, sources of funding and support (e.g., a support guide and bibliography), and their child’s rights. b. Prior to the IEP meeting, the local school system should provide to each family the written results of their child’s assess- 

216 EDUCATING CHILDREN WITH AUTISM ment, and a contact person to explain the findings if they wish, and should indicate that they will have the opportunity to present their concerns. Early during the IEP meeting, parents should be given an opportunity to voice their questions, concerns, and per- spectives about their child’s development and educational pro- gramming. 2-2 As part of local educational programs and intervention programs for children from birth to age 3, families of children with autistic spectrum disorders should be provided the opportunity to learn techniques for teaching their child new skills and reducing prob- lem behaviors. These opportunities should include not only di- dactic sessions, but also ongoing consultation in which individu- alized problem-solving, including in-home observations or training, occur for a family, as needed, to support improvements at home as well as at school. 2-3 Families that are experiencing stress in raising their children with an autistic spectrum disorder should be provided with mental health support services. Under Part C of the Individuals with Disabilities Education Act (IDEA), which addresses family sup- port and service coordination, including private service provid- ers, services should be extended to include families of children at least up to age 8 years. GOALS FOR EDUCATIONAL SERVICES Conclusions At the root of questions about the most appropriate educational inter- ventions lie differences in assumptions about what is possible and what is important to give students with autistic spectrum disorders through edu- cation. The appropriate goals for educational services are the same as those for other children: personal independence and social responsibility. These goals imply continuous progress in social and cognitive abilities, verbal and nonverbal communication skills, adaptive skills, amelioration of behavioral difficulties, and generalization of abilities across multiple environments. In some cases, reports have suggested that particular treat- ments can foster permanent “recovery”. However, as with other develop- mental disabilities, the core deficits of autistic spectrum disorders have generally been found to persist, to some degree, in most individuals. Research concerning outcomes can be characterized by whether the goal of intervention is broadly defined (e.g., “recovery” or “best out- 

CONCLUSIONS AND RECOMMENDATIONS 217 come”) or more specifically defined (e.g., increasing vocabulary or peer- directed social behavior); whether the design involves reporting results in terms of group or individual changes; and whether the goals are short term (i.e., to be achieved in a few weeks or months) or longer term (i.e., over years). A large body of single-subject research has demonstrated substantial progress in individual responses to specific intervention tech- niques in relatively short periods of times (e.g., several months) in many specific areas, including gains in social skills, language acquisition, non- verbal communication, and reductions in challenging behaviors. Studies over longer periods of time have documented joint attention, symbolic play, early language skills, and imitation as core deficits and hallmarks of the disorder that are predictive of longer term outcome in the domains of language, adaptive behaviors, and academic skills. Many treatment studies report postintervention placement as an out- come measure. While successful participation in regular classrooms is an important goal for some children with autistic spectrum disorders, the usefulness of placement in regular education classes as an outcome mea- sure is limited, because placement may be related to many variables other than the characteristics of the child (e.g., prevailing trends in inclusion, availability of other services). The most commonly reported outcome measure in group treatment studies of children with autistic spectrum disorders has been changes in IQ scores, which also have many limita- tions. Studies have reported substantial changes in large numbers of chil- dren in intervention studies and longitudinal studies in which children received a variety of interventions. Even in the treatment studies that have shown the strongest gains, children’s outcomes are variable, with some children making substantial progress and others showing very slow gains. The needs and strengths of young children with autistic spectrum disorders are very heterogeneous. Although there is evidence that many interventions lead to improvements and that some children shift in spe- cific diagnosis along the autism spectrum during the preschool years, there does not appear to be a simple relationship between any particular intervention and “recovery” from autistic spectrum disorders. Thus, while substantial evidence exists that treatments can reach short-term specific goals in many areas, gaps remain in addressing larger questions of the relationships between particular techniques, child characteristics, and outcomes. Recommendations The IEP and Individual Family Service Plan (IFSP) should be the vehicles for planning and implementing educational objectives. 

218 EDUCATING CHILDREN WITH AUTISM 3-1 Appropriate educational objectives for children with autistic spec- trum disorders should be observable, measurable behaviors and skills. These objectives should be able to be accomplished within 1 year and expected to affect a child’s participation in education, the community, and family life. They should include the devel- opment of: a. Social skills to enhance participation in family, school, and community activities (e.g., imitation, social initiations and re- sponse to adults and peers, parallel and interactive play with peers and siblings); b. Expressive verbal language, receptive language, and non- verbal communication skills; c. A functional symbolic communication system; d. Increased engagement and flexibility in developmentally appropriate tasks and play, including the ability to attend to the environment and respond to an appropriate motivational system; e. Fine and gross motor skills used for age appropriate func- tional activities, as needed; f. Cognitive skills, including symbolic play and basic con- cepts, as well as academic skills; g. Replacement of problem behaviors with more conven- tional and appropriate behaviors; and h. Independent organizational skills and other behaviors that underlie success in regular education classrooms (e.g., complet- ing a task independently, following instructions in a group, ask- ing for help). 3-2 Ongoing measurement of educational objectives must be docu- mented in order to determine whether a child is benefiting from a particular intervention. Every child’s response to the educational program should be assessed after a short period of time. Progress should be monitored frequently and objectives adjusted accord- ingly. CHARACTERISTICS OF EFFECTIVE INTERVENTIONS Conclusions In general, there is consistent agreement across comprehensive inter- vention programs about a number of features, though practical and, some- times, ethical considerations have made well-controlled studies with ran- dom assignment very difficult to conduct without direct evaluation. Characteristics of the most appropriate intervention for a given child must 

CONCLUSIONS AND RECOMMENDATIONS 219 be tied to that child’s and family’s needs. However, without direct evalu- ation, it is difficult to know which features are of greatest importance in a program. Across primarily preschool programs, there is a very strong consensus that the following features are critical: • entry into intervention programs as soon as an autism spectrum diagnosis is seriously considered; • active engagement in intensive instructional programming for a minimum of the equivalent of a full school day, 5 days (at least 25 hours) a week, with full year programming varied according to the child’s choronological age and developmental level; • repeated, planned teaching opportunities generally organized around relatively brief periods of time for the youngest children (e.g., 15- 20 minute intervals), including sufficient amounts of adult attention in one-to-one and very small group instruction to meet individualized goals; • inclusion of a family component, including parent training; • low student/teacher ratios (no more than two young children with autistic spectrum disorders per adult in the classroom); and • mechanisms for ongoing program evaluation and assessments of individual children’s progress, with results translated into adjustments in programming. Curricula across different programs differ in a number of ways. They include the ways in which goals are prioritized, affecting the relative time spent on verbal and nonverbal communication, social activities, behav- ioral, academic, motor, and other domains. Strategies from various pro- grams represent a range of techniques, including discrete trials, incidental teaching, structured teaching, “floor time”, and individualized modifica- tions of the environment, including schedules. Some programs adopt a unilateral use of one set of procedures, and others use a combination of approaches. Programs also differ in the relative amount of time spent in homes, centers, or schools, when children are considered ready for inclu- sion into regular classrooms, how the role of peers as intervention agents is supported, and in the use of distraction-free or natural environments. Programs also differ in the credentials that are required of direct support and supervisory staff and the formal and informal roles of collateral staff, such as speech language pathologists and occupational therapists. Overall, many of the programs are more similar than different in terms of levels of organization, staffing, ongoing monitoring, and the use of certain techniques, such as discrete trials, incidental learning, and struc- tured teaching. However, there are real differences in philosophy and practice that provide a range of alternatives for parents and school sys- tems considering various approaches. The key to any child’s educational program lies in the objectives specified in the IEP and the ways they are 

220 EDUCATING CHILDREN WITH AUTISM addressed. Much more important than the name of the program attended is how the environment and educational strategies allow implementation of the goals for a child and family. Thus, effective services will and should vary considerably across individual children, depending on a child’s age, cognitive and language levels, behavioral needs, and family priorities. Recommendations The committee’s recommendations for effective treatment are made on the basis of empirical findings, information from selected representa- tive programs, and findings in the general education and developmental literature. In particular, it is well established that children with autism spend much less time in focused and socially directed activity when in unstructured situations than do other children. Therefore, it becomes crucial to specify time engaged in social and focused activity as part of a program for children with autistic spectrum disorders. 4-1 Based on a set of individualized, specialized objectives and plans that are systematically implemented, educational services should begin as soon as a child is suspected of having an autistic spec- trum disorder. Taking into account the needs and strengths of an individual child and family, the child’s schedule and educational environment, in and out of the classroom, should be adapted as needed in order to implement the IEP. Educational services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, develop- mentally appropriate educational activity aimed toward identi- fied objectives. Where this activity takes place and the content of the activity should be determined on an individual basis, de- pending on characteristics of both the child and the family. 4-2 A child must receive sufficient individualized attention on a daily basis so that individual objectives can be effectively implemented; individualized attention should include individual therapies, de- velopmentally appropriate small group instruction, and direct one-to-one contact with teaching staff. 4-3 Assessment of a child’s progress in meeting objectives should be used on an ongoing basis to further refine the IEP. Lack of objec- tively documentable progress over a 3 month period should be taken to indicate a need to increase intensity by lowering stu- 

CONCLUSIONS AND RECOMMENDATIONS 221 dent/teacher ratios, increasing programming time, reformulat- ing curricula, or providing additional training and consultation. 4-4 To the extent that it leads to the specified educational goals (e.g., peer interaction skills, independent participation in regular edu- cation), children should receive specialized instruction in settings in which ongoing interactions occur with typically developing children. 4-5 Six kinds of interventions should have priority: a. Functional, spontaneous communication should be the pri- mary focus of early education. For very young children, pro- gramming should be based on the assumption that most children can learn to speak. Effective teaching techniques for both verbal language and alternative modes of functional communication, drawn from the empirical and theoretical literature, should be vigorously applied across settings. b. Social instruction should be delivered throughout the day in various settings, using specific activities and interventions planned to meet age-appropriate, individualized social goals (e.g., with very young children, response to maternal imitation; with preschool children, cooperative activities with peers). c. The teaching of play skills should focus on play with peers, with additional instruction in appropriate use of toys and other materials. d. Other instruction aimed at goals for cognitive develop- ment should also be carried out in the context in which the skills are expected to be used, with generalization and maintenance in natural contexts as important as the acquisition of new skills. Because new skills have to be learned before they can be general- ized, the documentation of rates of acquisition is an important first step. Methods of introduction of new skills may differ from teaching strategies to support generalization and maintenance. e. Intervention strategies that address problem behaviors should incorporate information about the contexts in which the behaviors occur; positive, proactive approaches; and the range of techniques that have empirical support (e.g., functional assess- ment, functional communication training, reinforcement of alter- native behaviors). f. Functional academic skills should be taught when appro- priate to the skills and needs of a child. 

222 EDUCATING CHILDREN WITH AUTISM PUBLIC POLICIES Conclusions The Individuals with Disabilities Education Act (IDEA) contains the necessary provisions for ensuring rights to appropriate education for chil- dren with autistic spectrum disorders. However, the implementation and specification of these services are variable. Early intervention for young children with autistic spectrum disorders is expensive, and most local schools need financial help from the state and federal programs to pro- vide appropriate services. The large number of court cases is a symptom of the tension between families and school systems. Case law has yielded an inconsistent pattern of findings that vary according to the characteristics of the individual cases. The number of challenges to decision-making for programming within school systems reflects parents’ concerns about the adequacy of knowledge and the expertise of school systems in determining their children’s education and implementing appropriate techniques. The treatment of autistic spectrum disorders often involves many disciplines and agencies. This confuses lines of financial and intellectual responsibility and complicates assessment and educational planning. When communication between families and school systems goes awry, it can directly affect children’s programming and the energy and financial resources that are put into education rather than litigation. Support sys- tems are not generally adequate in undergirding local service delivery programs and maximizing the usefulness of different disciplines and agencies, and transitions between service delivery agencies are often prob- lematic. A number of states have successful models for providing services to children with autism, and mechanisms are becoming increasingly effi- cient and flexible in some states. In most cases, existing agencies at state and federal levels can develop appropriate programs without restructur- ing—with the possible addition of special task forces or committees de- signed to deal with issues particular to children with autistic spectrum disorders. Recommendations The committee recommends that a variety of steps be taken to ensure that policies are effectively carried out at the state and local levels. 5-1 At the federal level, the National Institutes of Health’s Autism Coordinating Committee and the Federal Interagency Coordinat- ing Council should jointly appoint a clinical research oversight 

CONCLUSIONS AND RECOMMENDATIONS 223 task force of professionals knowledgeable in the field of autistic spectrum disorders, to review and periodically report on basic and applied research programs to the parent agencies and to track program implementation through the State Interagency Coordi- nating Councils or relevant state agencies. Administrative sup- port for these efforts should be provided by the appropriate de- partment of the Secretary’s office. 5-2 States should have regional resource and training centers with expertise in autistic spectrum disorders to provide training and technical support to local schools. States should also have a mechanism to evaluate the adequacy of current support systems to local schools and recommend ways for improvement. One such mechanism could be an autistic spectrum disorders support systems task force that would examine the relevant provisions for personnel preparation, technical assistance, and demonstration of exemplary programs and would make recommendations as to what would be needed to bring a state’s support systems into alignment with quality education for children with autistic spec- trum disorders. States should monitor coordination among and transitions between service delivery systems and should develop ways to facilitate these processes. 5-3 Families should have access to consultation and legal knowledge such as provided by an ombudsman who is independent of the school system and who could be a standard part of Individual- ized Educational Plan planning and meetings. The ombudsman should be knowledgeable about autistic spectrum disorders and about relevant law and court decisions. The ombudsman’s role should include attending IEP meetings, interpreting the school system’s communications about a child to parents, and propos- ing, at the parents’ request, alternatives to those presented by the school system. Professional and advocacy groups should work together to provide this service, with the Governor’s Council for Developmental Disabilities or the Autistic Spectrum Disorders Support Systems Task Force responsible for ensuring funding for training and support of this service. 5-4 State and federal agencies should consider ways to work with and support professional and advocacy groups to provide up-to- date, practical, scientifically valid information to parents and practitioners. 

224 EDUCATING CHILDREN WITH AUTISM 5-5 States should have clearly defined minimum standards for per- sonnel in educational settings for children with autistic spectrum disorders. For example, at a minimum, teachers should have some special preparation (e.g., preservice course work, equiva- lent inservice training, workshops, and supervised practice in re- search-based practices in autistic spectrum disorders) and should have well-trained, experienced support personnel available to provide ongoing training and additional consultation. 5-6 States should develop a systematic strategy to fund the interven- tions that are necessary for children with autistic spectrum disor- ders in local schools, so that this cost is not borne primarily by the parents or local school systems. State education departments should develop interagency collaborations to pool support for local systems. A state fund for intensive intervention, or more systematic use of Medicaid waivers or other patterns of funding currently in place in some states, should be considered. Families should not be expected to fund or provide the majority of educa- tional programming for their children. 5-7 An updated, accurate summary of case law, consultation services, and mediation mechanisms in autistic spectrum disorders should be made accessible by the Office of Special Education Programs so that schools and parents can understand the options available to them when conflicts arise. 5-8 Since levels of information about autistic spectrum disorders vary greatly within the groups and agencies that make funding and policy decisions about autistic spectrum disorders, including state task forces in education and review panels in federal agencies, it is crucial that persons knowledgeable in the range of needs and interventions associated with autistic spectrum disorders be in- cluded in those decision-making activities. PERSONNEL PREPARATION Conclusions The nature of autistic spectrum disorders and other disabilities that frequently accompany them has significant implications for approaches to education and intervention at school, in the home, and in the commu- nity. Approaches that emphasize the use of specific “packages” of mate- rials and methods associated with comprehensive intervention programs 

CONCLUSIONS AND RECOMMENDATIONS 225 may understate the multiple immediate and long-term needs of children for behavior support and for instruction across areas. Teachers are faced with a huge task. They must be familiar with theory and research concerning best practices for children with autistic spectrum disorders, including methods of applied behavior analysis, naturalistic learning, assistive technology, socialization, communication, inclusion, adaptation of the environment, language interventions, assess- ment, and the effective use of data collection systems. Specific problems in generalization and maintenance of behaviors also affect the need for training in methods of teaching children with autistic spectrum disorders. The wide range of IQ scores and verbal skills associated with autistic spectrum disorders, from profound mental retardation and severe lan- guage impairments to superior intelligence, intensify the need for person- nel training. To enable teachers to adequately work with parents and with other professionals to set appropriate goals, teachers need familiar- ity with the course of autistic spectrum disorders and the range of pos- sible outcomes. Teachers learn according to the same principles as their students. Multiple exposures, opportunities to practice, and active involvement in learning are all important aspects of learning for teachers, as well as stu- dents. Many states and community organizations have invested substan- tial funds in teacher preparation through workshops and large-audience lectures by well-known speakers. While such presentations can stimulate enthusiasm, they do not substitute for ongoing consultation and hands- on opportunities to observe and practice skills working with children with autistic spectrum disorders. Personnel preparation remains one of the weakest elements of effec- tive programming for children with autistic spectrum disorders and their families. Ways of building on the knowledge of teachers as they acquire experience with children with autistic spectrum disorders, and ways of keeping skilled personnel within the field, are critical. This is particularly true given recent trends for dependence on relatively inexperienced assis- tants for in-home programs. Providing knowledge about autistic spec- trum disorders to special education and regular education administra- tors, as well as to specialized providers with major roles in early intervention (e.g., speech language pathologists) will be critical in effect- ing change that is proactive. Findings concerning change in educational and other opportunities suggest that administrative attitudes and sup- port are critical in improving schools. Recommendations The committee recommends that relevant state and federal agencies institute an agenda for upgrading personnel preparation for those who 

226 EDUCATING CHILDREN WITH AUTISM work with, and are responsible for, children with autistic spectrum disor- ders and their families. These efforts should be part of a larger effort to coordinate and collaborate with the already established infrastructure of special education, regional resource centers, technical assistance pro- grams, personnel preparation, communication sharing, and other relevant aspects of the existing infrastructure. Professionals aware of the special nature of these children are already carrying out many of these recom- mendations in a limited fashion. The committee urges agencies to pro- vide the personnel preparation resources needed for intensified efforts to build a viable support structure for educating children with autistic spec- trum disorders. 6-1 The Office of Special Education Programs should establish a 5- year plan to provide priority funds for preservice and inservice preparation for teachers, paraprofessionals, and other personnel providing services for children with autistic spectrum disorders, including children under age 3 years. 6-2 The need for a team approach involving many professions should be addressed by personnel preparation and practicum work within multidisciplined organizations and teams. 6-3 A special emphasis should be placed on training of trainers. There is a short supply of expertise and experience in the field of educa- tion for children with autistic spectrum disorders, and special attention should be paid to rapidly increase the capabilities of the trainers, who may have experience in special education or related fields, but not in the special skills and practices for children with autistic spectrum disorders. 6-4 The existing support systems that provide short-term training (e.g., technical assistance systems, resource centers, etc.) should include people with special expertise in autistic spectrum disor- ders on their staff. 6-5 The content of the curriculum for children with autistic spectrum disorders should be based on sound research. A continuing pro- gram should be established from such agencies as the National Institute of Mental Health and the National Institute of Child Health and Human Development to translate their research into usable information for practitioners. Work on family research is particularly relevant. 

CONCLUSIONS AND RECOMMENDATIONS 227 NEEDED RESEARCH Conclusions There are several distinct and substantial bodies of research relevant to young children with autistic spectrum disorders. One body identifies neurological, behavioral, and developmental characteristics. Another body of research addresses diagnostic practices and related issues of prevalence. Another has examined the effects of comprehensive early treatment programs on the immediate and long-term outcomes of chil- dren and their families. These treatment studies tended to use some form of group experimental design. An additional body of research has ad- dressed individual instructional or intervention approaches, with many studies in this literature using single-subject experimental methodology. Altogether, a large research base exists, but with relatively little integra- tion across bodies of literature. Highly knowledgeable researchers in one area of autistic spectrum disorders may have minimal information from other perspectives, even about studies with direct bearing on their find- ings. Most researchers have not used randomized group comparison de- signs because of the practical and ethical difficulties in randomly assign- ing children and families to treatment groups. In addition, there have been significant controversies over the type of control or contrast group to use and the conditions necessary for demonstrating effectiveness. Al- though a number of comprehensive programs have provided data on their effectiveness, and, in some cases, claims have been made that certain treatments are superior to others, there have been virtually no compari- sons of different comprehensive interventions of equal intensity. Across several of the bodies of literature, the children and families who have participated in studies are often inadequately described. Stan- dardized diagnoses, descriptions of ethnicity, the social class, and associ- ated features of the children (such as mental retardation and language level) are often not specified. Fidelity of treatment implementation has not been consistently assessed. Generalization, particularly across set- tings, and maintenance of treatment effects are not always measured. Though there is little evidence concerning the effectiveness of discipline- specific therapies, there is substantial research supporting the effective- ness of many specific therapeutic techniques. Recommendations 7-1 Funding agencies and professional journals should require minimium standards in design and description of intervention projects. All intervention studies should provide the following information: 

228 EDUCATING CHILDREN WITH AUTISM a. Adequate information concerning the children and fami- lies who participated, and who chose not to participate or with- drew from participation, including chronological age, develop- mental assessment data (including verbal and nonverbal IQ levels), standardized diagnoses, gender, race, family characteris- tics, socioeconomic status, and relevant health or other biological impairments; b. description of the intervention in sufficient detail so that an external group could replicate it; detailed documentation is crucial especially if no treatment manual is available; c. fidelity of treatment and degree of implementation; d. specific objective measures of expected outcomes, assessed at regular intervals; and e. measures of outcome that are independent of the interven- tion, in terms of both the evaluators and the measures, and in- clude broad immediate and long-term effects on children and families, particularly generalization and maintenance effects. 7-2 Funders and performers of research should recognize that valu- able information can be provided by a variety of approaches to research in intervention, including group experimental and single-subject designs. 7-3 In order to help educators and consumers make informed deci- sions about appropriate methods of intervention for particular children, federal agencies involved in autistic spectrum disorders initiatives (including the Office of Special Education Programs, the Office of Educational Research and Improvement, the Na- tional Institute of Child Health and Human Development, the National Institute of Mental Health, the National Institute of Neu- rological Disorders and Stroke, and the National Institute on Deaf- ness and Other Communication Disorders) and nonprofit agen- cies with similar national missions (such as Autism Society of America Foundation, Cure Autism Now, and National Alliance for Autism Research) should form a research task force and spe- cifically allocate federal responsibilites for recruiting and funding a comprehensive program of research related to intervention and treatment. This program should include: a. development of more specific, precise measures of impor- tant areas of outcome, such as social functioning, peer relation- ships, spontaneous communication and language, and the acqui- sition of competence in natural contexts (e.g., classroom, home); 

CONCLUSIONS AND RECOMMENDATIONS 229 b. definition of appropriate educational skills and sequences in social and cognitive development, informed by normal devel- opmental literature; c. measurement of the effects of the interactions between fam- ily variables (e.g., family structure, family supports, socioeco- nomic status), child factors (such as degree of language impair- ment), and responses to educational interventions (including family-centered, parent training, and other approaches) on out- comes. d. longitudinal treatment studies, where feasible, built on a clinical model with randomly assigned samples of sufficient size to assess the effectiveness of differing modes of treatment. 7-4 Treatment studies should recognize the common components of many comprehensive programs (e.g., standardized curriculum, family training, presence of typically developing peers) and should target and measure, longitudinally when feasible, “active ingredients” and mediating variables that influence the effects of intervention (e.g., communication and interaction opportunities for engagement, levels of interaction and initiation, specific teach- ing techniques, proportion of time in close proximity of peers). The concomitant development of innovative treatments building on these “active ingredients” should be supported. 7-5 In response to amendments in IDEA to make education more outcome oriented, a federal initiative should solicit and fund stud- ies in the following areas, not easily supported under the current review system: a. the development of instruments for measurement of diag- nosis and critical aspects of development, particularly tools for early screening of autistic spectrum disorders and for measure- ment of response to interventions; b. the development and application of sophisticated statisti- cal methods of analysis of change and growth, particularly multi- variate designs and those applicable to small samples; and c. the development and dissemination of novel research de- signs that combine individual and group approaches in ways that minimize biases and maximize the power of small samples. 7-6 Competitively funded initiatives in early education in autistic spectrum disorders should require plans and contain sufficient funding for short- and long-term assessment of child outcomes and measures of program efficacy. 

Autism is a word most of us are familiar with. But do we really know what it means?

Children with autism are challenged by the most essential human behaviors. They have difficulty interacting with other people—often failing to see people as people rather than simply objects in their environment. They cannot easily communicate ideas and feelings, have great trouble imagining what others think or feel, and in some cases spend their lives speechless. They frequently find it hard to make friends or even bond with family members. Their behavior can seem bizarre.

Education is the primary form of treatment for this mysterious condition. This means that we place important responsibilities on schools, teachers and children's parents, as well as the other professionals who work with children with autism. With the passage of the Individuals with Disabilities Education Act of 1975, we accepted responsibility for educating children who face special challenges like autism. While we have since amassed a substantial body of research, researchers have not adequately communicated with one another, and their findings have not been integrated into a proven curriculum.

Educating Children with Autism outlines an interdisciplinary approach to education for children with autism. The committee explores what makes education effective for the child with autism and identifies specific characteristics of programs that work. Recommendations are offered for choosing educational content and strategies, introducing interaction with other children, and other key areas.

This book examines some fundamental issues, including:

• How children's specific diagnoses should affect educational assessment and planning
• How we can support the families of children with autism
• Features of effective instructional and comprehensive programs and strategies
• How we can better prepare teachers, school staffs, professionals, and parents to educate children with autism
• What policies at the federal, state, and local levels will best ensure appropriate education, examining strategies and resources needed to address the rights of children with autism to appropriate education.

Children with autism present educators with one of their most difficult challenges. Through a comprehensive examination of the scientific knowledge underlying educational practices, programs, and strategies, Educating Children with Autism presents valuable information for parents, administrators, advocates, researchers, and policy makers.

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