A CASE STUDY ON AUTISM: SCHOOL ACCOMMODATIONS AND INCLUSIVE SETTINGS
Coffey, Kenneth M
In 1943, Leo Kanner first described a discrete set of behaviors observed in children as “autistic disturbance of affective contact” (Kanner, 1943, p. 217). He noted that the most notable features of this condition were obsessive and stereotypic behaviors accompanied by echolalia. Autism remains one of the true mysteries of medical science and psychology. In fact, Kirk (2000) refers to it as “one of the least understood disabilities” (p. 445). To add to the confusion, authorities disagree on whether autism is a distinct disability or a subgroup of another exceptionality (Smith, 2001). “Until 1981 autism was included in the definition of severe emotional disturbance, but in that year the secretary of education moved autism from the federal definition of ‘severe emotional disturbance’ to the category of Other health impaired'” (Ysseldyke & Algozzine, 1995, p. 433).
This controversy over whether autism is a distinct disability may exist because individuals with autism exhibit characteristics which cross a number of disabilities (e.g. other health impaired, mental retardation, communication disorders). The characteristics of these varying disabilities include language disorders (echolalia), emotional disturbance (unusual responses to people or attachment to objects), and mental retardation (approximately 70% of persons with autism have cognitive disorders).
In 1980, the Diagnostic and Statistical Manual of Mental Disorders III (American Psychiatric Association, 1980) first included autism as a separate and distinct disability (Tanguay, Robertson, & Derrick, 1998). Until 1997, autism was not included as a distinct disability category under the auspices of the Individuals with Disability Education Act (IDEA). For the previous 16 years it was categorized as “other health impaired”. With the 1997 amendments to IDEA (P.L. 105-17), autism was defined as:
a developmental disability significantly affecting verbal and non-verbal communication and social interaction usually evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movement, resistance to environmental change or change in daily routines, and unusual sensory experiences (NICHCY, 1997, p. 1).
Most recently, there has been a major move to change from the dichotomy of autistic- nonautistic to a recognition of a continuum referred to as autism spectrum disorder (ASD) (Billstedt, 2000). This continuum ranges from individuals manifesting relatively mild autistic- related disorders such as Asperger’s Syndrome to individuals manifesting autism with mental retardation and other relatively severe symptoms (Scheuermann & Webber, 2002).
The incidence of autism spectrum disorder in the United States is reported to be approximately 4.8 per 10,000 with a consistent excess of males to females, up to a 4:1 ratio (Szatmari, Jones, Zwaigenbaum, & MacLean, 1998). Some researchers believe autism spectrum disorder to be much more common, approaching half a percent of the general population of children (Billstedt, 2000). Occasionally, a family may have multiple children with autism spectrum disorder, however, this phenomenon is rare. Less than 3% of the siblings of children identified with ASD also have the disorder (Bolton et al., 1994).
The purpose of this single case study was to investigate the school and community supports that led to the inclusion of two siblings with ASD. This case study seemed to be the most appropriate qualitative method to obtain in-depth information about this family. Merriam (1998) noted that a “qualitative case study is an intensive, holistic description and analysis of a single instance, phenomena, or social unit” (p. 21).
The older child in the family is a 14 year old male attending the 8th grade with well above average intelligence and mild to moderate autistic tendencies with no other health problems. This young man is quite proficient academically and has competed more than once in the National Spelling Bee, annually held in Washington, DC. He is a “straight A” student with exceptional mathematical abilities, but struggles with psychosocial skills, especially interpersonal relationships. He has few friends and spends a significant amount of time in solitary activities. His parents have encouraged him to participate in sports and community organizations, but efforts in this area have proven unsuccessful.
The younger child in the family is an 11 year old female attending the 4th grade with below average intelligence who has moderate to severe autistic tendencies with no other health problems. She struggles both academically and socially. She requires a significant level of support to succeed in school, and even with these supports, remains below grade level. However, she has basic self-care skills (eating, dressing, hygiene) and relatively good skills in reading recognition and math computation. This student has much more difficulty in reading comprehension, math reasoning, and both the social and functional use of language. While she will respond to the social overtures of others, she does not initiate any social interaction. Like her sibling, she has few friends and spends a significant amount of time in solitary activities.
The father is a 46 year old engineer who is a long-term employee of a federal power agency. He has only a few friends and prefers to spend his leisure time at home. He has a somewhat introverted personality and is marginally involved in one community organization. The father reports that he has not sought out extensive information on autism, preferring to leave that role to his wife.
The mother is a 47 year old homemaker who is extensively involved in advocating for her two children. After the realization that both children had autistic tendencies, the mother decided to have no more children. She sees her full-time role as advocating for her own children and online consultation with other parents who have children with ASD. The mother stays abreast of developments in the field of autism, continually reading books on the subject and occasionally traveling to attend workshops. Due to the fact that the family resides in a relatively small community, there is no specific advocacy group or physician specializing in autism. Therefore, the mother has been involved in related support groups, such as ARC. As an advocate, she spends considerable time in the local school, facilitating the inclusion of her children. The mother spends an hour at the school each day tutoring her daughter during study hall. Prior to the beginning of each school year she devotes a significant amount of time to observing various classrooms to determine the most suitable teacher and classroom climate for her children.
The family lives in a relatively small university town in the southeastern United States with a population near 20,000. Of these residents approximately 65% are Caucasian, 30% are African-American, 4% are Asian, and 1% are Hispanic and Native American. The U.S. Census Bureau estimates that 20% of the persons living in this county live below the poverty level.
The K-12 school in which the children are enrolled serves a total of 795 students with an average class size of 20 on a single campus. It has a relatively small school staff which includes special services and the typical extracurricular activities. The school has a reputation for strong discipline and high levels of parental involvement.
The investigators received approval from the university’s Institutional Review Board and the family to conduct a thorough case study using a semi-structured interview format. The protocol was structured to question each parent individually and then as a couple. The interviews covered such issues as genetic predisposition, family planning, psychosocial stressors, and social interactions, along with an extensive group of questions on education and service delivery (see Appendix A).
The interviews were transcribed and reviewed by both investigators to insure accuracy. To determine emerging themes, the investigators examined the transcriptions from the interviews with each parent and the interview from the couple together. A review of the data determined those areas in which parents showed consensus as well as areas in which the parents exhibited divergent views. Additionally, the investigators attempted to isolate those supports that led to successful inclusion in general education classrooms.
From an analysis of the separate interviews with each parent and the joint interview with the couple, the following issues emerged:
Areas of Disagreement
The parents disagreed on just two major issues.
(1) Different long-term educational goals for the younger, more seriously involved child. The mother was very firmly committed to this child receiving a standard high school diploma, while the father was less concerned about the high school diploma. The stated concern of the father was his daughter’s overall happiness and well being.
(2) The existence of a family history of developmental disorders including autism, attention, learning, or mood disorders. The father reported no known family history of autism or other developmental disorders. The mother, however, stated that both extended families had a history of developmental and mood disorders.
Areas of Agreement
The parents agreed on most items of inquiry during the interviews. They concurred on:
(1) The developmental history of the children. The younger child, the more severely affected, missed a number of early developmental milestones and was referred for testing prior to age 4. Concerns about the older child did not arise until he approached school age.
(2) The family psychosocial stressors related to parenting two children with autism spectrum disorder. Both parents agreed they faced considerable stress and provided detailed examples of specific psychosocial Stressors. For example, the husband wants his spouse to keep abreast of the advances in autism and advocate for the children. Conversely, the wife wishes he would share in this role. Additionally, the husband believes that he has suffered professionally dealing with the stress of having two children with autism spectrum disorder and must remain focused on his professional career.
(3) The daily activities and routines of family life. Both parents agreed that apart from church involvement the family has few outside interests or social activities. Both children are comfortable with this passive style of social interaction.
(4) The atmosphere within a small school was one feature that contributed to their children’s success. The parents believed that a smaller school with a reduced pupil-teacher ratio provided more flexibility and a greater willingness to accommodate. For example, the parents requested and received preferential seating, modified testing, peer tutoring, extended time for assignments, and modified homework. Also, home visits by the teacher are encouraged. The small school with a single K-12 campus facilitated a smooth transition from grade to grade.
(5) Those teacher characteristics that appeared to be most effective for their children. Both parents felt that a firm, but flexible teacher was optimal. The parents and school administrator jointly select teachers based on teaching style and classroom climate. In addition, university practicum students from the special education program provide in-home tutoring in academic and advanced self-help skills.
(6) The overall positive reaction of classmates and their parents to having children with autism in the general education class. As expected, there were some initial expressions of concern about the impact of the younger child on the academic rigor of the classroom (i.e. two phone calls from concerned parents). Following this initial period of adjustment, her peers and their parents have been generally supportive of her inclusion in the classroom. This support has been evidenced by frequent social overtures from her classmates as well as peer tutoring.
(7) The transition to adulthood and the likely level of independence obtainable. Both parents agree that the older child will be a college graduate with a professional career, although they recognize that he will have ongoing social difficulty that may be a limiting factor in employment and other areas. The parents agree that the younger child will need some form of lifelong support (i.e. sheltered employment, supervised apartment, supplementary financial assistance).
(8) Finding understanding physicians and dentists. A final area of agreement was the difficulty in finding medical professionals who were willing to vary from their normal protocol in treating the children. As one example, the parents eventually located a physician who was willing to take off his white coat and tie and perform clinical observations and procedures while keeping a distinct physical distance from the younger, more seriously involved child whenever possible.
Discussion and Implications
The issues that emerged from this study lead to both educational and community implications. Schools and parents of children with autism spectrum disorder might find the following suggestions especially helpful:
* Establish a working relationship between parents and administrators to match the personality and characteristics of prospective teachers to the student with autism spectrum disorder;
* Encourage home visits by teachers to better understand family dynamics and appreciate the challenges faced by parents;
* Schedule frequent parent-teachers conferences so both parents and teachers can reach agreement on managing current social and academic challenges;
* View small school size and unified campus (physical plant) as a strength versus a limitation;
* Identify classrooms emphasizing peer group support for academic and social issues;
* Utilize classrooms with a reduced teacher-pupil ratio; and
* Demonstrate a willingness to be flexible concerning implementation of school policies (e.g. scheduling, homework, and testing).
* Utilize sources of support available within the community, although the focus might not be specifically on autism spectrum disorder (e.g. ARC, previously referred to as Association for Retarded Citizens, Learning Disabilities Association, and Council for Exceptional Children);
* Utilize university students from appropriate academic fields for a variety of support tasks including respite services, training in daily living skills, developing interventions or creative alternatives for particularly difficult situations, modeling appropriate behavior, and implementing a functional behavioral analysis; and
* Utilize the expertise of a regional or state university (e.g. diagnostic services, academic tutoring, and behavioral strategies).
Three limitations were noted in the present study. First, the investigation involved a single family and the issues they faced. Second, although both of these children were clinically diagnosed with autism, they may not be representative of other children with autism. Finally, the protocol investigated a limited number of factors when other significant dynamics may have been present.
Implications for Future Research
This investigation provides insight into the supports utilized by a family with multiple incidence autism. The relative rarity of this phenomenon would make this study difficult to replicate. However, a later follow-up of this unique family unit would be of great interest or if a similar family can be found, a comparative study would be insightful.
Additionally, studies on the provision of services offered by small or single-campus schools to students with low incidence disabilities might be helpful to parents seeking necessary supports for their children. As with the present case study, the school appeared to be flexible and caring in providing an appropriate education to both of these children with ASD.
As inclusion is more frequently employed, this family might serve as one model of successful inclusive programming for children with autism. Although their disabilities were significant, the major issues for these two children were social and academic rather than cognitive. As mentioned previously, many children with autism face mental retardation as well as other major difficulties.
Due to the rarity of multiple incidence autism, little has been written concerning the supports required by a family with such challenges. A teacher or related service provider might not be inclined to picture a family with multiple incidences of autism as having the ability to function successfully in the community and school, but with multiple supports this appears to be the case.
One can only speculate on the factors leading to relatively successful integration in the community and inclusion in the school for these children with ASD. It appears that the high levels of supports played an integral role in this phenomenon. Families with multiple children with disabilities need various types of school and community supports depending on their unique circumstances. This case study found that the supports provided were appropriate for the functioning of this family academically and otherwise.
Copyright Project Innovation Summer 2004
Provided by ProQuest Information and Learning Company. All rights Reserved.