Inclusion Criteria
Behaviorally based intensive treat- ment approaches for children with autism and pervasive devel-
opmental disorders (PDD) are receiving increased attention in the scientific and popular literature as well as in the politi- cal arena. Much of this interest may be attributed to the finding that intensive intervention that is based on the princi- ples of applied behavior analysis can re- sult in positive outcomes for many young children with autism/PDD (e.g., Lovaas, 1987; McEachin, Smith, & Lovaas, 1993; Smith, Groen, & Wynn, 2000). Historically, the prognosis for many, if not most, children with autism, which is the among the most serious forms of childhood psychopathology, has been guarded or poor (see Howlin & Goode, 1998, for a review of outcome studies for adults with autism). Thus, reports of many children making substantial and durable gains in cognitive, language, so-
cial, and behavioral functioning have of- fered renewed hope to families and care- givers (Rogers, 1998).
Many of the demonstration projects that reported favorable treatment out- comes involved relatively small numbers of children and were conducted under tightly controlled conditions, using ther- apists who received specialized training and close supervision (see Smith, 1999, for a review of these studies). As empiri- cal evidence regarding the beneficial ef- fects of early intensive behavioral inter- vention grew in the clinical literature, equitable and timely access to this treat- ment modality became a primary issue for parents and advocacy groups. As a consequence, they began to appeal to policymakers and funding agencies in order to receive services in their local communities. Government-funded treat- ment programs began to appear in sev- eral largely populated U.S. states, such as
FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES VOLUME 19, NUMBER 2, SUMMER 2004
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Behavior Management Services for Children with Autism/PDD: Program Description and Patterns of Referral Jane A. Summers, Carolyn M. Houlding, and Jo-Ann M. Reitzel
As a result of the varied and often persistent behavioral challenges of individuals with autism and pervasive developmental disorders (PDD) and the need for their families/ caregivers to receive information, training, and hands-on support, there will be a con- tinued demand for behavioral support services. This article provides information about an outpatient behavior management clinic for children with autism/PDD that used approaches based on the principles of applied behavior analysis. Parent training was an integral part of services that were provided. Data are presented on the characteris- tics and service needs of 52 children with autism/PDD who were referred to the clinic over a 2-year period. The majority of referrals were for children between the ages of 5 and 13 years, and externalizing behaviors were identified as the primary concern most often by families. Implications of the findings for service planning and delivery are discussed.
California and New York, and have more recently emerged in the Canadian prov- ince of Ontario.
Although this spotlight on intensive intervention for young children with autism/PDD is welcome, it is important that it not overshadow children’s varied and often persistent behavioral chal- lenges (Boyd & Corley, 2001). Chil- dren’s communication and social impair- ments place them at increased risk for developing problem behaviors, which in turn can adversely affect their options for education in least restrictive environ- ments and opportunities for social inclu- sion (Horner, Carr, Strain, Todd, & Reed, 2002). As children mature into adolescence and adulthood, their in- creasing size and strength may heighten real or perceived safety concerns (Mesi- bov & Handlan, 1997) and make physi- cal management of their behavior more difficult. Seizures may develop in a pro- portion of adolescents and can be associ- ated with a temporary or sometimes per- manent deterioration in their behavioral functioning (Gillberg, 1991). Psychoso- cial stressors (e.g., change in schools or teachers, increasing emphasis on peer re- lationships) can multiply and intensify. All in all, individuals with autism are at particular risk of developing psychiatric, behavioral, and emotional disturbance (Bradley, Summers, Wood, & Bryson, 2004; Brereton & Tonge, 2001; Bryson & Smith, 1998). In view of these factors, one would anticipate an ongoing de-
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mand for behavioral support services at various times throughout the life span of the individual with autism.
Supporting an individual with behav- ioral challenges and autism can place heavy demands on the family and tax their physical, financial, and emotional resources (Marcus, Kunce, & Schopler, 1997). Educators and community sup- port personnel in turn often struggle to overcome the disparity between intensity of need and availability of supports. Two key needs that have been identified by these groups are access to information about positive behavior interventions and access to professionals who can help them develop their skills in this area, as well as to professionals who can help them manage the challenging behavior of the individual with autism (Dunlap, Robbins, & Darrow, 1994; Ruef, Turn- bull, Turnbull, & Poston, 1999). In both instances, caregivers’ needs for informa- tion, training, and hands-on support fit well with the competencies and range of services that are offered by professionals with a background in applied behavior analysis (ABA).
It would be informative to examine how these critical components of behav- ioral supports that operate across a con- tinuum from childhood to young adult- hood for individuals with autism/PDD and challenging behavior and an empha- sis on educating and supporting primary caregivers may be woven together into an ABA-based clinical service, as well as to study the resulting referral patterns. With these issues in mind, the aim of this arti- cle is twofold:
1. to present data on the characteristics and service needs of children with autism/PDD who were referred to a specialty outpatient behavior management clinic and
2. to describe the conceptual frame- work for the program and provide details about the operation (staffing, service-delivery model) of the clinic.
Method
All referrals of children, adolescents, and young adults (up to the age of 21 years)
with autism/PDD that were made over a 2-year period to a specialized outpa- tient behavior management clinic for children with developmental disabilities and disorders were reviewed. Statistics were obtained using SPSS Version 9.0 for Windows.
Program Description and Referral Process
The behavior management clinic was one of several outpatient clinics that operated within the Department of Behavioral Psychology at a major American center for children with developmental and physical disabilities and was run on a fee- for-service basis. The centre was affiliated with a major university and teaching hos- pital.
Referrals to the department were re- ceived from a variety of sources, primar- ily medical (e.g., pediatricians, family practitioners, neurologists) and nonmed- ical staff members (e.g., speech–language pathologists, physical therapists, social workers), educators, and community support staff members, as well as directly from families. In the majority of cases, re- ferrals from a secondary source were in direct response to parental concerns re- garding their child’s behavior. Referrals were reviewed at weekly departmental in- take meetings, and cases were directed to the most appropriate outpatient clinic. Cases were subsequently assigned to a behavior therapist from the clinic, who contacted the family to schedule an ini- tial evaluation.
Initial Evaluation
During the initial evaluation, a behavior therapist from the clinic met with the family or caregiver to review the child’s clinical history and the reason(s) for re- ferral. A multi-item departmental check- list of common behavioral concerns was used to obtain a general overview of the child’s presenting problems, followed by an in-depth analysis of up to three be- haviors of greatest concern to the family at the time of evaluation. Medical, psy- chological, and/or school records were reviewed to support and supplement in- formation that was provided by the fam-
ily. Once the initial evaluation had been completed, the behavioral assessment was conducted and a behavior management plan was developed to address the fam- ily’s concerns. Services were conducted in the community (homes, schools) and clinic.
Staff Qualifications
Behavior therapists possessed the follow- ing qualifications: (a) undergraduate or graduate degree in psychology or the be- havioral sciences and (b) several years of experience working with children with developmental disabilities or disorders (more specifically, children with autism/ PDD) and challenging behavior, using approaches that were based on the prin- ciples of ABA (see Anderson & Roman- czyk, 1999, for a discussion of ABA ap- proaches). Therapists were required to demonstrate competencies in the follow- ing areas: defining, assessing, and mea- suring behavior; developing, implement- ing, and evaluating programs to reduce the frequency of inappropriate behavior and increase the frequency of prosocial (replacement) behavior; and document- ing treatment efficacy. Supervision was provided by a doctorate-level psycholo- gist. Behavior therapists also had oppor- tunities to discuss their cases at team meetings and peer reviews.
Parent Training
Parent/caregiver training was an integral part of services that were provided. Par- ents received training in a variety of behavioral interventions (e.g., altering antecedents and consequences) and skill- enhancement approaches (e.g., func- tional communication training), primar- ily through (a) observing as the therapist demonstrated the procedures; (b) prac- ticing the procedures with their child while the therapist provided feedback; and (c) reviewing written behavioral pro- tocols.
Results
A total of 183 referrals were made to the behavior management clinic over a
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2-year period (1991–1993). Fifty-two children (28% of the sample) had in their health record a clinical diagnosis of autism/PDD from a physician or psy- chologist. The diagnosis was based pri- marily on Diagnostic and Statistical Manual of Mental Disorders–Third Edition–Revised (DSM-III-R; American Psychiatric Association [APA], 1987) cri- teria or, in some cases, DSM-III (APA, 1980) criteria.
Age and Gender Distribution
The sample consisted of 40 boys and 12 girls, yielding a boy-to-girl ratio of 3.3:1. The mean age of the children at the time of referral was 7.6 years (Mdn = 7.3 years, SD = 3.3 years, range = 2.6–17.3 years). Children of elementary school age (5 years through 12 years 11 months) ac- counted for the largest proportion of re- ferrals to the clinic (65% of the total sam- ple), followed by preschool children ages 2 years to 4 years 11 months (27%) and adolescents ages 13 to 18 years (8%). Re- ferrals were evenly distributed through- out the 5- to 13-year age range, with the exception of a moderate increase in re- ferrals for those between the ages of 7 and 8 years.
Level of Functioning
Children’s levels of functioning were based on psychometric test results that were obtained from their medical or school records. The majority of children were developmentally disabled: 34% functioned in the mild-to-moderate range of developmental disability, an equal percentage functioned in the moderate- to-severe range, and 19% functioned in the severe-to-profound range. Thirteen percent of children were of borderline- to-average intelligence.
Language
Families provided information on chil- dren’s language characteristics during the initial evaluation. Seventy-three per- cent of the children were verbal or had some speech skills (this ranged from single words to sentences), 25% were nonverbal and used augmentative forms
of communication (e.g., signs, picture communication system, communication board), and 2% had not developed any conventional communication skills.
Additional Diagnoses
Many children carried other diagnoses in addition to their autism/PDD: 87% had received a diagnosis of developmental disability, and 35% were diagnosed with attention-deficit/hyperactivity disorder. In terms of medical conditions, 29% had a history of ear or throat infections and 6% had either a seizure disorder or a physical/motor impairment.
Medication
Twenty children (38%) were on medica- tion at the time of the initial evaluation, with 35% of all children taking psy- chotropic medication. Children may have been taking more than one type of medication at the time of the referral. The specific classes of medication and the percentage of children who were taking them were as follows: stimulants, 31%; neuroleptics, 8%; other medications (e.g., bronchodilators, antibiotics), 8%; anticonvulsants, 4%; and antidepressants, 2%. Psychotropic medication usage was most common among children in the el- ementary school age group (accounting for 83% of children on medication), fol- lowed by preschool-age children (17%). The absolute percentages of children tak- ing psychotropic medication by age group were 44% for children between 5 and 13 years of age, 21% for children between 2 and 5 years of age, and 0% for children between 13 and 18 years. A chi- square analysis was used to examine the degree of association between age and psychotropic medication use. In order to do so, children were split into two age groups (under and over the median age of 7.3 years). There was no significant as- sociation between age and medication use, χ2(1, N = 52) = .617, p > .10, Φ = .109.
School Placement
Fifty-five percent of the children were en- rolled in a segregated school for students
with disabilities, 37% were placed in a special class in the general public school system, 2% attended a special preschool, another 2% were in a general education class with services, and 4% attended a general education class without special support.
Referral Source
Sixty percent of referrals to the behavior management clinic were from hospital sources. The remaining referral sources and the percentage of referrals they rep- resented were as follows: family or schools, 12% each; community physician/health- care worker, 10%; social welfare agency, 4%; and local autism society, 2%.
Previous Services
Sixty-two percent of families had previ- ously received services within the center, which could have included specialized assessments as part of a comprehensive diagnostic workup as well as therapy from different disciplines (e.g., speech– language/communication therapy, occu- pational and physical therapy), possibly including behavioral psychology. The percentage of re-referrals for behavior management services was not known. Thirteen percent of families had received other services (e.g., from a private thera- pist, through the school system), 6% had sought input from a medical profes- sional, and 19% were seeking services for the first time.
Behavioral Data
Each family was asked to specify a maxi- mum of three behavior problems of greatest concern to them at the time of evaluation. This process resulted in 17 different behavioral concerns being se- lected. The three individual behaviors that produced the greatest number of re- ferrals for behavior management services were tantrums (17%), aggression (15%), and noncompliance (12%). See Table 1 for a complete listing of all behavioral is- sues. The majority of families identified multiple behavioral concerns: 96% iden- tified two concerns, and 81% identified three concerns.
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Discrete behaviors were conceptual- ized as falling into the following three broad categories:
1. externalizing or acting out behaviors, which consisted of behaviors that were considered to be socially inap- propriate or potentially harmful to the environment or others (e.g., aggression, tantrums, noncompli- ance, verbal abuse or disruptions, excessive motor behavior, inappro- priate sexual behavior);
2. adaptive skill deficits, which com- prised deficits in the areas of com- munication, interpersonal relation- ships, self-care, daily living, and leisure skills (e.g., eating, sleep, or toileting problems; lack of appropri- ate social and play skills); and
3. self-endangerment, which was defined as child behaviors that had the potential to cause harm or injury to self (e.g., self-injury, pica, elopement/running away).
After individual behavioral items were regrouped in this manner, families’ pri- mary behavioral concern was most likely to fall under the category of externaliz- ing or “acting out” behaviors (constitut-
ing 73% of all referrals), followed by deficits in adaptive skills (19%) and self- endangerment (8%). When families were permitted to specify up to three behav- ioral concerns for their children, exter- nalizing behaviors remained their most prominent concern (56%) but were fol- lowed more closely by adaptive skill defi- cits (35%) and lastly by self-endangerment (9%).
Discussion
The families of children with autism/ PDD in this study reported that exter- nalizing or “acting out” behaviors were the single most common reason for seek- ing outpatient behavior management ser- vices. Edelstein and Glenwick (1997) iden- tified a similar pattern of behavior for adults with developmental disabilities who were referred for psychological ser- vices. In terms of specific externalizing behaviors, tantrums, aggression, and noncompliance were of foremost con- cern to the families in this study. This particular finding mirrors results that were obtained by Charlop, Parrish, Fen- ton, and Cataldo (1987) when they ex- amined why children were referred to an outpatient pediatric psychological ser- vice. Similarly, Moore et al. (1998) found that aggression and temper tantrums were the behavioral issues most com- monly identified by families of children with autism who were referred to a spe- cialized assessment service. Taken to- gether, these findings suggest that fami- lies and caregivers are less tolerant of challenging behaviors that are socially unacceptable, harmful to others, and dif- ficult to manage and, as a consequence, seek professional help. Although this pat- tern of results is not specific to children with a diagnosis of autism/PDD, it is nonetheless a significant source of con- cern for their families and, as such, war- rants attention.
Deficits in children’s adaptive func- tioning also emerged as major referral is- sues, particularly in the areas of commu- nication and socialization. This finding is not surprising, given that these are cen- tral features of autism/PDD; however, it is important for service providers to rec-
ognize that impairments in these specific aspects of children’s adaptive functioning are significantly greater than in compari- son groups of children who are matched for IQ and chronological age (Carpen- tieri & Morgan, 1996) and may have an important bearing on their eventual out- come (Loveland & Kelley, 1988). Thus, an exclusive focus on managing the be- havioral excesses that are displayed by these children with autism/PDD would not be effective, and concurrent proce- dures to facilitate development of social and communication skills need to be an explicit feature of any behavioral inter- ventions for them (e.g., National Re- search Council, 2001).
The finding that approximately one third of the children who were referred for behavior management services were already taking psychotropic medication (primarily stimulants) as well as the fact that medication usage and number of re- ferrals were highest in the 5- to 13-year age group warrants closer scrutiny. At first glance, this pattern of stimulant medication usage may seem at odds with more recent data indicating that antide- pressants and neuroleptics (particularly the newer atypical antipsychotics) are the most commonly prescribed medications for individuals with autism (Langworthy- Lam, Aman, & Van Bourgondien, 2002). In the previous study, however, age was found to be a significant factor in regard to medication usage among individuals who were surveyed; lower age was more predictive of stimulant usage (along with higher levels of functioning and less se- vere autism), whereas increasing age was associated with the use of other classes of psychotropic medications. In light of Langworthy-Lam et al.’s (2002) findings, the pattern of stimulant medication us- age among school-age children in the present study may not be so unusual. It is important to exercise caution when re- viewing these results because they are de- rived from just one clinic and the sample size is very small. Nonetheless, they are consistent with findings that psycho- tropic medication is commonly prescribed for children and adults with autism to treat behavioral and psychiatric distur- bance (Aman, Van Bourgondien, Wol- ford, & Sarphare, 1995). A better under-
TABLE 1 Families’ Primary Behavioral Concerns
Percentage of families identifying
Specific behavior the behavior
Tantrums 17 Aggression 15 Noncompliance 12 Communication deficits 10 Toileting issues 7 Disruptive behaviors 6 Self-stimulatory behavior 6 Social skills deficits 5 Self-injurious behavior 5 Excessive motor behavior 5 Pica 3 Lack of self-help skills 3 Sleep and bedtime problems 1 Inappropriate sexual behavior 1 Verbal abuse 1 Elopement 1 Lack of play skills 1
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standing is needed of the factors that influence parents’ consideration of psy- chotropic medication for their children with autism/PDD, as well as their per- ceptions of its effectiveness in treating behavior problems (Swiezy & Summers, 1996).
Although it is not possible to derive many conclusions from the results of the present study, the data are useful for il- lustrating the range of problem behaviors exhibited by children with autism/PDD that lead their parents and other care- givers to seek behavior management ser- vices. Although these data were obtained more than a decade ago, they still have contemporary relevance, despite inter- vening changes in diagnostic criteria, medications, and educational services. Evidence (both direct and indirect) that behavioral issues are still a major area of concern for many individuals with autism comes from several sources:
1. the finding that the percentage of individuals with autism who were prescribed psychotropic medication to treat psychiatric and behavioral disturbance increased between the time of an original survey (Aman et al., 1995) and a follow-up survey (Langworthy-Lam et al., 2002);
2. a recent large-scale investigation (McCracken et al., 2002) that was conducted to evaluate the effective- ness of psychotropic medication for treating severe behavior problems (e.g., aggression, tantrums, self- injury) in children with autism;
3. the finding that even after early in- tensive behavioral intervention, seri- ous behavior problems can persist among some children with autism (Boyd & Corley, 2001); and
4. the growing body of literature indi- cating that adolescents and young adults with autism are prone to psy- chiatric, behavioral, and emotional disturbance (Bradley et al., 2004; Brereton & Tonge, 2001; Bryson & Smith, 1998).
Positive Behavior Support
Perhaps more than anything else, the regular emergence of “fad” or unproven
treatments (e.g., facilitated communica- tion) is a testament to the complex and chronic challenges that are faced by many individuals with autism and their families and caregivers. Clearly, ongoing access to evidence-based treatments and qualified service providers is needed to protect those involved from unnecessary, ineffec- tive, and/or potentially harmful ap- proaches (Schreibman, 2000). However, if the ultimate goal is to produce and sus- tain long-term, comprehensive, and meaningful behavioral changes (i.e., re- ductions in problem behaviors and in- creases in adaptive alternative behaviors) in individuals with autism, due consider- ation needs to be given to the process by which behavioral interventions are pro- vided.
Positive behavior support represents a broad approach to addressing problem behaviors that recognizes and incorpo- rates many of the following key elements:
1. Problem behaviors need to be addressed in the everyday settings in which the individual with autism lives, works, attends school, and in- teracts with the community.
2. There is a need to involve a range of people who have significant relation- ships with the individual with autism (e.g., family members, teachers, community support workers, other service providers) and to promote collaboration among these groups.
3. Support plans should be individual- ized and based on thorough, multi- component assessments.
4. Emphasis should be placed on estab- lishing practical long-term goals that will promote the individual’s func- tional independence and an im- proved quality of life.
5. The behavioral intervention plan should fit with the goals, needs, pref- erences, and values that operate in different settings and environments.
6. There should be a specific focus on enhancing the competence and con- fidence of families, educators, and caregivers through training, hands- on support, and the provision of practical, relevant information (Albin, Dunlap, & Lucyshyn, 2002; Dunlap & Fox, 1999a; Hieneman &
Dunlap, 2000; Ruef et al., 1999; Turnbull et al., 2002)
Limitations
The present study has a number of limi- tations that should be considered when reviewing the results. The data were col- lected from one clinical setting and should not be viewed as a representative sample of children with autism/PDD and their behavioral needs. The small sample size precluded an assessment of potential associations between child characteristics (age at time of referral, gender, level of functioning, severity and duration of behavior problems, medica- tion usage) and reasons for referral. Moreover, systematic information was not collected on family variables, such as socioeconomic status, parenting style, values and preferences, access to sup- ports, competencies, and ability to advo- cate for services (see Dunlap & Fox, 1999b). Factors related to family func- tioning interact with child characteristics in ways that may not only influence par- ents’ decision to seek professional input but also benefit from it. In terms of ser- vice volume, approximately 25% of all children who were referred to an outpa- tient behavior management clinic for children with developmental disabilities and disorders were diagnosed with autism/PDD. In an effort to improve al- location and delivery of services, future studies should more systematically ex- plore the factors that can influence fami- lies’ use of behavior management ser- vices, such as accessibility of services, timing of provision, outcome of previous involvement with other programs or pro- fessionals, and extent to which they “buy in” with the interventions.
Conclusions
By presenting data on the characteristics and service needs of individuals with autism and challenging behavior, as well as describing a clinical program that was geared to meet these needs, we have shown that there is a market for this type of specialized service and that an outpa- tient, community-based team of behav- ior therapists can operate successfully
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outside of a hospital setting. This infor- mation may be helpful for securing fund- ing, developing services, and influencing health care and social policy, with the ul- timate goal of easing the difficulties that many families and caregivers of individu- als with autism/PDD and challenging behaviors face in trying to access appro- priate and affordable services (Bryson, 1996). Of course, behavior management should be viewed as one component in a continuum of services for children, ado- lescents, and adults with autism/PDD and their families.
ABOUT THE AUTHORS
Jane A. Summers, PhD, is the clinical director of behavioral and menal health programs for children, adolescents, and adults with develop- mental disabilities at Hamilton Health Sci- ences. She is also an assistant professor in the Department of Psychiatry and Behavioural Neurosciences, Faculty of Health Sciences, Mc- Master University. Her research interests in- clude behavioral and psychiatric phenotypes and severe behavior disorders. Carolyn M. Houlding, M. Psych (Clin), is a behavior con- sultant for children and adults with develop- mental disabilities at Hamilton Health Sciences. Her research interests include develop- mental disabilities and work in childcare set- tings. Jo-Ann M. Reitzel, PhD, is the clinical director of the Hamilton-Niagara Regional Early Autism Initiative at Hamilton Health Sciences. Her research interests include predic- tors of successful outcomes for children with autism who are receiving early intervention. Address: Jane A. Summers, Residence 36, Che- doke Site, McMaster Children’s Hospital, Hamilton Health Sciences, PO Box 2000, Hamilton, Ontario, Canada L8N 3Z5.
AUTHORS’ NOTES
1. The authors would like to thank Kristina Tsvetanov for her assistance with the data collection and Drs. Peter Szatmari and El- speth Bradley for their helpful comments on the manuscript.
2. Portions of this article were presented at the annual conference of the Association for Be- havior Analysis, Atlanta, GA, May, 1994.
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