Developing a comprehensive individual intervention program for a child with ASD is a daunting task for the child’s parents (Figure 27.1). Each child is unique, with a different set of diffi-culties, as well as strengths. The child’s primary physician must work with the parents to help make this task less overwhelming. The physician can anticipate being asked about a wide array of al-ternative treatments being offered in the community, which vary enormously in their claims, in the integrity of those making the
claims, and in their ultimate safety and utility. The physician who immediately and outright and pejoratively dismisses these alterna-tives as useless is not helpful to the child or his family (the excep-tion being dangerous or cost-prohibitive prospective treatments). Rather, it is helpful to listen and then educate the family, at a level commensurate with their sophistication, about how to analyze and interpret claims and science underlying these treatments.
Autistic disorder is recognized as a chronic disorder with a changing course requiring a long-term course of treatment that includes the necessity of an intervention with various treatments at different times. At the present time, most treatments for the ASDs are symptom directed. Given that there is no current cure for autistic disorder or the other ASD, goals of treatment should encompass short-term and long-term needs of the individual and his or her family (Table 27.5).
Every attempt should be made to achieve treatment goals on a community-based environment since institutionalization may hinder a child’s ability to learn means of functioning and adapting in typical social settings. Community-based treatment can usually be maintained, except in times of extreme stress or need, during which time a child (and family) might benefit from respite care or brief hospitalization. Effective treatment often entails setting appropriate expectations for the child and adjust-ing the child’s environment to foster success.
Because the autistic individual often requires diverse treatments and services simultaneously, the role of the primary physician is to be the coordinator of services. Frequent visits with the child and the child’s caretakers initially allow the physician to assess the in-dividual needs of the child while establishing a therapeutic alli-ance. An effective approach often calls for the services of a number of professionals working in a multidisciplinary fashion. This group may include psychiatrists, pediatricians, pediatric neurologists, psychologists, special educators, speech and language therapists social workers, and other specialized therapists (Table 27.6)
There is significant controversy over what particular forms of therapy are best for children with ASD. Some of this contro-versy is a result of claims of children making dramatic improve-ments with some of these therapies.
The most successful interventions use a variety of posi-tive reinforcement schedules to enhance the desired behaviors and extinguish undesirable behaviors. Discrete trial training, an operant conditioning model, is particularly useful in this regard. Generalization of skills from the behavioral training environment to other settings is a key to success. Applied behavioral analysis (ABA) uses careful assessment of adaptive and maladaptive be-haviors and specific interventions addressing each behavior and children receiving ABA have shown significant improvement in a number of areas, including IQ, visual–spatial skills, language, and academics (Smith et al. 2001).
A prerequisite to putting a behavioral plan in place with a child with ASD is to identify the problem behaviors. These behaviors often include interfering repetitive actions, self-injurious behav-iors, or aggression. While there is little difficulty in identifying these highly visible behaviors, what is much more difficult is 1) determining the antecedents to these behaviors and 2) knowing what constitutes an appropriate reaction or consequence to these behaviors on the part of the caregiver.
To determine the antecedent is often extraordinarily difficult, since it is often not apparent exactly what happened in the environment that stimulated the behavior. This is particularly true if the behavior is chronic and has developed some autonomous function (i.e., no longer a stimulus–response event). To make things more complicated, it could be internal perception or meaning of what happened in a child with autism (poor language and socially nonresponsive) that may have initiated the behavior. For example, imagine a nonverbal child frustrated by his inability to continue a mental routine created by a teacher insisting that the child orient himself to a school task like sitting in reading circle. Further, assume that the child does not have a repertoire of appropriate social responses, and instead responds by biting the teacher on the arm. It will be very difficult for the teacher to know that the child was in the middle of a mental routine and not able to communicate his distress verbally, thus leading to the inappropriate behavior. It takes time and attention to understand these events processes in children with ASD. Once they are clear, appropriate behavioral intervention is possible.
Durand and Carr (1991) attempted to determine the func-tion of problem behaviors in children with ASD. They concluded that most behaviors could be classified as:
1. a need for help;
2. a desire to escape a stressful situation;
3. a desire to obtain an object;
4. an attempt to protest unwanted events;
5. an attempt to obtain stimulation or attention.
Children with ASD often engage in rituals and routines which appear to be an attempt to relieve anxiety and/or to exert control over their environment. The key to success is a gradual shap-ing of the behavior rather than dramatic expectations and harsh consequences. One should begin intervention by evaluating pos-sible, underlying stimuli or predisposing factors for the behavior. Strategies include determining when, where and for how long an activity can take place. Additional strategies include making environmental changes that reduce anxiety and even ignoring behaviors that do not create undue problems. Adjunct pharmaco-logical intervention is often helpful.
Up to 50% of children with ASD will not acquire useful language. For those with some but not fully intact language skills, speech therapy is an important part of therapeutic and academic plan-ning. An emphasis on the social use of language is often helpful, and when the child can articulate some of his or her needs, there is often a reduction in problem behaviors.
Longitudinal studies indicate that children who have not acquired useful language by the age of 7 usually have longstanding verbal communication difficulties. For these children, it is often helpful to devise an alternative means of communication: sign language or use of augmentative communication devices such as computers and picture exchange communication systems or PECS. PECS involves the use of photographs or line drawings on cards. The child then points to or hands the appropriate card or cards to another person in order to effect communication. Once again, children are encouraged to use verbalization, when possible, in conjunction with sharing the cards (Erdmann et al., 1996). Irrespective of the technique used, establishing a consistent method of communication is central to the treatment of individuals with ASD.
Children and adults with ASD lack many of the innate and learned social skills, especially reciprocal social interactions, that most people simply take for granted. Maintaining appropri-ate interpersonal distance, spontaneously initiating conversation, participating in reciprocal social exchange and other facets of complex social interaction are not easily incorporated in the rou-tine behaviors and activities of individuals with ASDs. Subtlety and changing complexity of social interaction as well as the in-nateness of many social skills is a central part of daily life and a key to successful adaptation for typically functioning individu-als. Helping individuals with ASDs address these challenges is difficult but also critical for enhancing overall functioning.
Odom and Strain (1986) identified the three primary techniques that can be effectively utilized:
· Proximity. Establish proximity refers to the fact that it is very helpful to have the child with ASD near other children in the en-vironment. The mere proximity increases the likelihood of in-teraction and imitation as well as positive social reinforcement.
· Use. The use of prompts relates to have specific prompts and reinforcement cues to use previously learned behaviors in so-cial settings (e.g., “Raise your hand if you have a question”). Attention to reinforcement means that even a less than fully competent attempt at appropriate social behavior, even if re-sponse to a prompt, receive clear and effective reinforcement when it occurs (e.g., calling on the child promptly when he raises his hand to ask a question and also saying “You did a good job when you raised your hand to ask the question”).
· Encourage peer initiation is helpful to train peers who are likely to interact with the child or adult with ASD in tech-niques for initiating social contact. For many individuals, this means explaining the disability and dealing with fears or bi-ases. For others, it may mean encouraging them to persist in their attempts at engagement, even in the face of limited, inap-propriate, or inadequate responses.
Academic resources and placement are important components in the child’s overall treatment. First and foremost, schools are where children go to acquire social skills and acquaintances, as well as academic skills. Secondly, schools often have a variety of skilled professionals who are trained to provide necessary serv-ices for the individual with ASD. And, finally, in the USA, all public schools have a statutory obligation to provide all children (even those with disabilities) with a free and appropriate educa-tion in the least restrictive environment.
Previously, children with ASD had been put in alternative settings, but more recently there has been increased interest in maintaining many ASD children in regular classroom settings. Studies seem to indicate that ASD children in regular classrooms have increased social interaction, a larger social network and have more advanced individualized education plan goals later in their academic careers (Fryxell and Kennedy, 1995). Whether a child is fully or partially included in a regular classroom or placed in a self-contained setting, each ASD child will need to have an indi-vidualized plan of care that carefully and specifically articulates goals and the techniques to be used to reach those goals. In addi-tion, specific measures of goal attainment and regular review of the plan should be a part of this important intervention. In order to establish these goals and plans, a full assessment of the child’s strengths and weaknesses must be completed through the efforts of numerous skilled professionals. Educational plans must incor-porate academic, social and behavioral goals.
At this time, there are no pharmacological agents with US Food and Drug Administration (FDA)-approved labeling specific for the treatment of ASD in either children or adults. Many of the symptoms commonly seen in ASD (rituals, aggressive behavior and hyperactivity) are also commonly seen in children, adoles-cents and adults with mental retardation but without a PDD. Some of the pharmacological strategies for the treatment of autistic dis-order have been extrapolated from studies of related conditions, largely in adults, but including attention-deficit/hyperactivity disorder and OCD. Clinicians and families should be reminded before any treatment is initiated that:
• Current treatments target symptoms.
• Current treatments do not target a specifi c etiological mechanism for ASD.
• Anecdotal reports do not establish effi cacy, effectiveness, or safety for any treatment.
• Controlled, double-blind trials (preferably with replication) are the contemporary standard for determining if a treatment is safe and appropriate.
• All treatments have side effects.
Before specific pharmacological agents are discussed, it must be stressed that one should not use psychopharmacological agents with the expectation that they will cure children with autistic disor-der as many parents and teachers of children with autistic disorder expect medication to eliminate core social, cognitive and commu-nication dysfunction. There is no pharmacological substitute for appropriate educational, behavioral, psychotherapeutic, vocational and recreational programming. It is essential to remember and to remind parents, teachers and others that medication should always be seen as an adjunct to these core interventions that address the developmental challenges associated with these disorders.
Because many individuals with ASD have impairments in language and social communication, the use of rating scales be-comes an essential part of the treatment. Standard rating scales provide the pharmacotherapist with a framework in which to assess response to medication and a relatively straightforward way to collect standard information about the patient’s function-ing in a variety of settings. The Aberrant Behavior Checklist – Community Version (Aman, 1994) covers many target symptom areas for most patients with ASD. Although rating scales cannot replace careful clinical examination of the patient and interviews with parents and teachers, they may be graphed next to dosages of medications to assist in treatment planning in response to the patient’s clinical condition. This is often not only helpful in mak-ing clinical decisions but also gives families and service provid-ers a concrete sense of how a treatment is progressing.
The use of medications to treat autistic disorder and other ASDs appears to have significant potential as an adjunct to edu-cational, environmental and social interventions. It is a reason-able goal for the pharmacotherapist to adopt the judicious use of psychopharmacological agents to assist in alleviating symptoms that have been found to respond to pharmacological intervention (Table 27.7). This focus on facilitating adaptation requires atten-tion to five important principles:
· Environmental manipulations, including behavioral treat-ment, may be as effective as, if not more effective than, medi-cation for selected symptomatic treatment.
· It is essential that the living arrangement for the individual must ensure safe and consistent administration and monitor-ing of the medication to be used.
· Individuals with autistic disorder and other ASDs often have other DSM-IV-TR Axis I disorders. If a comorbid DSM-IV-TR Axis I disorder is present, standard treatment for that disorder should be initiated first.
· Medication should be selected on the basis of potential effects on target symptoms and there should be an established way of specifically monitoring the response to the treatment over time.
· A careful assessment of the risk/benefit ratio must be made before initiating treatment and, to the extent possible, the pa-tient’s caretakers and the patient must understand the risks and benefits of the treatment.
This class of agents includes selective serotonin reuptake inhibi-tors (SSRIs) as well as the less selective but potent clomipramine, a tricyclic antidepressant (Table 27.8). This group of medications is most effective when insistence on routines or rituals are present to the point of manifest anxiety or aggression in response to interrup-tion of the routines or rituals, or after the onset of another disorder such as major depressive disorder or OCD. The common side effects associated with SSRIs are motor restlessness, insomnia, elation, ir-ritability and decreased appetite. Because many of these symptoms may be present in the often cyclical natural course of ASD before the medication is initiated, the emergence of new symptoms, a dif-ferent quality of the symptoms, and occurrence of these symptoms in a new cluster are clues that the symptoms are side effects of medi-cation rather than part of the natural course of the disorder.
Small but significant reductions in inattention and hyperactivity ratings may be seen in children with autistic disorder in response to stimulants such as methylphenidate and dextroamphetamine
In a placebo-controlled crossover study, eight of 13 subjects showed a reduction of at least 50% on methylphenidate (Handen et al., 2000). However, stereotypies may worsen, so drug trials for the individual patient must always be assessed to determine whether the therapeutic effects outweigh side effects. A key dis-tinction in assessing attentional problems of children with ASD is the distinction between poor sustained attention (characteris-tic of children with attention-deficit/hyperactivity disorder) and poor joint attention (characteristic of children with autistic disor-der). Problems in joint attention require educational and behavio-ral interventions or treatment of rituals with an SSRI. Problems in maintenance of attention of the type seen in attention-deficit/ hyperactivity disorder are more likely to respond to stimulants.
The alpha-2-adrenergic receptor agonist clonidine reduced irri-tability as well as hyperactivity and impulsivity in two double-blind, placebo-controlled trials. However, tolerance developed several months after initiation of the treatment in each child who was treated long term but may have been reduced in several cases by administering clonidine in the morning and then 6 to 8 hours later with a 16- to 18-hour interval between the last dose of one day and the first dose of the next day. If tolerance does develop, the dose should not be increased because tolerance to sedation does not occur, and sedation may lead to increased ag-gression due to disinhibition or decreased cognitive control of impulses. Adrenergic receptor antagonists, such as propranolol and naldolol, have not been tested in double-blind trials in ASD. However, open trials have reported the use of these medications in the treatment of aggression and impulsivity in developmental disorders including autistic disorder.
Because they were among the first modern psychopharmaco-logical agents, typical neuroleptics have been among the most extensively studied drugs in autistic disorder. Trifluoperazine, thioridazine, haloperidol and pimozide have been studied in dou-ble-blind, controlled trials lasting from 2 to 6 months. Reduction of fidgetiness, interpersonal withdrawal, speech deviance and stereotypes has been documented in response to these. How-ever, patients with autistic disorder are as vulnerable to poten-tially irreversible tardive dyskinesia as any other group of young patients. Owing to the often earlier age at initiation of pharma-cotherapy, patients with ASD treated with typical neuroleptics may be at higher risk because of the potential increased lifetime exposure of medication limiting their routine use in the care of patients with ASD, especially as first-line treatments.
Because of the positive response of many children with autis-tic disorder to typical neuroleptics, similar medications with re-duced risk of tardive dyskinesia must be considered. In addition, atypical neuroleptics are often effective in treating the negative symptoms of schizophrenia, which seem similar to several of the social deficits in autistic disorder. Both risperidone and olanzap-ine have shown promise in open label trials in reducing hyperac-tivity, impulsivity, aggressiveness and obsessive preoccupations.
A double-blind, placebo-controlled study found risperidone to be more effective than placebo in the treatment of repetitive behav-ior, aggression and irritability (McDougle et al., 1998).
Because 25 to 33% of patients with autistic disorder have seizures, the psychopharmacological management of patients with autistic disorder or other ASD must take into consideration the past or current history of epilepsy and the potential role of anticonvulsants. In an open trial of divalproex, 10 of 14 patients responded favorably, showing improvements in affective stability, impulsivity and aggression (Hollander et al., 2001). Because barbiturates have been associated with hyperactivity, depression and cognitive impairment, they should be changed to an alternative drug, depending on the seizure and avoided when possible. In addition, phenytoin (Dilantin) is sedating and can cause hypertrophy of the gums and hirsutism, which may contribute to the social challenges for people with autistic disorder. Carbamazepine and valproate may have positive psychotropic effects, particularly when cyclical irritability, insomnia and hyperactivity are present.
Double-blind trials have demonstrated that naltrexone, an opiate antagonist, has little efficacy in treating the core social and cognitive symptoms of autistic. While the use of naltrexone as a specific treatment for autistic disorder no longer seems to be likely, it may have a role in the treatment of self-injurious behavior, although the controlled data are equivocal. Controlled trials have shown a modest reduction in symptoms of hyperactivity and restlessness sometimes associated with autistic disorder. Potential side effects include nausea and vomiting. Naltrexone may have an adverse effect on the outcome of Rett’s disorder on the basis of a relatively large, randomized, double-blind, placebo-controlled trial (Percy et al., 1994).
Adolescents and adults with autistic disorder often exhibit symp-toms in a cyclic manner and so there is much interest in how these patients might respond to agents typically used in bipolar disorder. A single open trial of lithium revealed no significant im-provement in symptoms in patients with autistic disorder without bipolar disorder (Campbell et al., 1972).
Benzodiazepines have not been studied systematically in chil-dren and adolescents with autistic disorder. However, their use to reduce anxiety in short-term treatment, such as before dental procedures, is similar to their use in management of anxiety in people without a PDD. One open label study has found a decrease in anxiety and irritability in patients receiving the anxiolytic bus-pirone (Buitelaar et al., 1998).
Interest in these agents has been sparked by the hypothesis that ASDs may be a disorder of hypoglutaminergic activity. In a dou-ble-blind, placebo-controlled study of the glutamatergic antago-nist amantadine hydrochloride, there were substantial improve-ments in clinician-rated hyperactivity and irritability, although parental reports did not reach statistical significance (King et al., 2001).
Pyridoxine, the water-soluble essential vitamin B6, has been used extensively as a pharmacological treatment in autistic disorder. In the doses used for autistic disorder, it is not being used as a cofactor for normally regulated enzyme function or as a vita-min; rather, it is used to modulate the function of neurotrans-mitter enzymes, such as tryptophan hydroxylase and tyrosine hydroxylase. Recent reviews have concluded that there are little data to support the claim that vitamin B6 improves developmental course. The same is true for using fenfluramine, naloxone and secretin.