Mental Retardation With Autism

¶ … Incidence, Diagnoses, Characteristics and Safety Considerations Involved in the Provision of Physical Education Activities to Students with Mental Retardation with Autism

An Examination of the Incidence, Diagnoses, Characteristics and Safety Considerations Involved in the Provision of Physical Education Activities to Students with Mental Retardation With and Without Autism

To excuse students from physical education is the safe way out, but it does not meet their needs since it becomes costly to them in the long run. The inference here is not to say that physical educators advocate placing children in a program of physical education which will aggravate an injury, cause frustration, or to make him do things which are beyond their ability. -- Nancy Allison Close, Donald K. Matthews, 1973

This paper provides an overview of what physical education (PE) teachers should consider when developing activities and lesson plans for students with the cognitive and physical constraints associated with mental retardation with and without and autism. Relevant definitions and the etiologies of mental retardation in general and autism in particular are followed by a description of the typical characteristics of these syndromes. A discussion of the various health and safety precautions and considerations that should be taken is followed by an assessment of the modifications to physical activity and tips for inclusion into a general physical education using real-world examples from the literature. Finally, considerations that are specific to these disabilities and its characteristics and a list of sports and physical education organizations conclude the analysis.

Autism and Physical Education.

Definition. Providing a comprehensive definition of mental retardation, with or without autism, is problematic; for instance, MacMillan, Siperstein, and Gresham (1996) note that over the past several decades, educators and scientists have debated the concept of mental retardation, especially as it concerns its etiology, prevalence, and viability as a discrete and reliable diagnostic category. According to these authors, "At the heart of the debate is the fact that mild mental retardation (MMR), as a diagnostic category, subsumes cases with biological and psychosocial etiologic patterns. Some researchers have termed the latter etiology 'mental retardation of unknown origins'" (356). Recently, this controversy has assumed new levels of importance as a result of the decision by the American Association on Mental Retardation (AAMR) to eliminate the levels of mental retardation based on cognitive dysfunction (e.g., Mild, Moderate, Severe, and Profound). According to MacMillan and his colleagues, the AAMR now differentiates cases of mental retardation based on the levels of support students will require across four domains. In fact, the new definition tends to cloud these previous distinctions between subgroups regarding their etiology given that: (a) the majority of cases of mild mental retardation (MMR) are of unknown etiology while a much larger percentage of cases of more severe retardation have "known etiologies"; and (b) students with mild mental retardation do not generally have the same types of impairments and problems that typify students with more severe forms of mental retardation (MacMillan et al. 1996).

Further complicating matters for definition purposes is the fact that autism is also frequently used as an umbrella term to describe a wide range of conditions and syndromes, many of which do not fit the more precise medical criteria required for such diagnoses. "The inherent challenge for any definition of mental retardation," Gresham et al. say, "is that it must take into account two groups of people: (a) those whose diagnoses are an issue only with regard to what types of services to provide and (b) those whose diagnoses determine whether the disorder is present, and only then, what services should be provided" (366). According to Siegel (1998), autism is a developmental disorder that typically affects various aspects of how a child sees the world and learns from his or her experiences. "Children with autism lack the usual desire for social contact," he says, and "The attention and approval of others are not important to them in the usual way. Autism is not an absolute lack of desire for affiliation, but a relative one" (Siegel 1998:9). Tustin (1995) notes that, "Autism literally means living in terms of the self. To an observer, a child in a state of autism appears to be self-centered since he shows little response to the outside world. However, paradoxically, the child in such a state has little awareness of being a 'self'" (1). Generally speaking, autism is used to denote an early developmental situation, as well as some type of development that has not proceeded along normal lines (Tustin 1995).

Children who suffer from mental retardation with autism, though, are just like their normally endowed peers in wanting to participate in physical education activities, to play games, and to participate in sports. To date, more and more educators have shown that autistic students can be mainstreamed according to their various abilities by using "adapted physical education." "Across the nation," Bauman says, adapted physical education is providing new opportunities for children with a wide range of disabilities to be integrated into mainstream physical educational settings. Furthermore, it is a disabled student's absolute right to be integrated into the mainstream classroom to the maximum extent possible. According to a Position Statement released by the Council on Physical Education for Children (COPEC) of the National Association for Sport and Physical Education (NASPE) and the Adapted Physical Activity Council (APAC) of the American Association for Active Lifestyles and Fitness (AAALF): "NO student should have to earn his/her way into physical education. In other words, inclusion in physical education means that all students, including students with disabilities, start in regular physical education" (2005:2).

Adapted physical education is an individualized program of physical and motor fitness; fundamental motor skills and patterns; and skills in aquatics, dance and individual and group games and sports designed to meet the unique needs of individuals" (6). Citing Winnick (2000), Bauman says that such programs are generally designed to meet the long-term (i.e., greater than 30 days) needs of students with the entire range cognitive disabilities that may be present in mentally retarded students with or without autism. The physical education activities are still provided by a regular physical education teacher, or preferably by a full-time adapted physical education teacher. According to Bauman, "Adapted physical education provides students with the opportunity to participate in a regular physical education program" (6-7). Professional physical educators and the growing body of research in the field support the use of the term "adapted physical education" for students who require "individualized physical education" (Close & Matthew 423). In sum, the term adapted physical education is accurate and timely because students' success or failure will largely depend on the extent to which a program is able to recognize their limitations or capabilities. As a result, an effective adapted physical education can provide a student with any or all of the following: improved physical fitness; psychological adjustment; social adjustment; recreational fitness, in the light of acquisition of sports skills with carryover for later life; increased self-confidence and personal security (Close & Matthew 1973).

Causes or Theories of Causes. While the condition of mental retardation is better described in the literature than it is understood, much has been learned in recent years that can help educators in their quest to provide safe and effective learning opportunities for mentally retarded students with autism. According to MacMillan et al., "In the past, educators have argued that the classification system used for 'diagnosis' should reflect this difference through use of such terms as educable mental retardation." When the syndrome of autism was first described by Kanner in 1943, he suggested that it was caused by an inborn defect of presumably constitutional origin; according to Rutter (2000), for the next 30 years, the potential role of genetic factors was largely dismissed by the scientific community due to the prevailing mindset of the time: "This was the era of supposed 'refrigerator' parents of autistic children and of 'schizophrenogenic' mothers" (3). Even the reviews by geneticists failed to attribute any real significance to a genetic component, based largely on the technology available at the time. According to Rutter, at this point in time, "Emphasis tended to be placed on the lack of vertical transmission (i.e., the rarity with which children with autism had parents with autism), on the very low rate of autism in siblings (estimated at that time at about 2%), and the lack of identified chromosome anomalies associated with autism" (4). In recent years, there has also been a growing body of evidence that suggests there is a genetic factor involved, but that there are a number of conditions that mirror autism but are not due to the same genetic component (Rutter 2000). As a result, atypical syndromes of autism have been found to be associated with congenital blindness, with profound institutional privation, and with a mixed collection of medical conditions or with profound mental retardation; however, the evidence to date does not indicate positively that these syndromes do not involve any of the same genetic liability but that is the thrust of the findings (Rutter 2000).

Diagnosis and Incidence of Mental Retardation with Autism. The incidence of mental retardation has been estimated at 3% for the general population (MacMillan et al. 1996); however, as noted above, because definitions of mental retardation with or without autism vary and the syndrome can be easily confused with similar conditions, depending on what criteria are used, slightly more or slightly fewer children will be considered mentally retarded with autism, or be diagnosed with another form of learning disability. For example, the AAMR criteria are based strictly on an IQ range for those students who are classified as having mental retardation. "By definition," MacMillan et al. note, "students with IQs in the range 55-70 who are not identified as having mental retardation cannot be mildly mentally retarded if they are not originally classified as having mental retardation" (356). This "catch 22" has caused some researchers to question the logic behind this approach; these critics argue that IQ should be used in combination with etiology, and for recognition that there would then be students with mental retardation who "require available services" and others who do not require such services. The diagnosis of students who may have mental retardation with autism is even more challenging.

Besides the DSM-IV definition of autistic spectrum disorders, there are also slightly different international sets of diagnostic standards, as well as previous sets of diagnostic standards still in use such as DSM-III-R and DSM-III (Siegel 1998). Despite the lack of consensus in diagnostic criteria and the paucity of standard definition, Siegel reports that most experts today generally agree that if all cases of autism and autistic-like disorders are considered together ("and a fairly liberal definition of autism is applied"), the incidence of autistic spectrum disorders is approximately ten to fifteen out of every 10,000 children. "Put another way," he says, "that's one out of 650 to 1,000 children. In a country the size of the United States, there are estimated to be about 450,000 children and adults with different forms of autistic spectrum disorders" (Siegel 12). It should also be pointed out that because resources are scarce by definition, students who exhibit autistic-like behaviors should be tested for mental retardation. According to Siegel, "In many cases, mental retardation can be detected at the same time that autism is diagnosed, and is important to take into account because it bears on the child's expected rate of learning" (12).

Characteristics of the Disabilities. In their book, Advanced Abnormal Child Psychology, Ammerman and Hersen (2000) report that by definition, "mental retardation emerges in childhood and is characterized by low IQ and deficits in functional ability" (268). While there are several potential causes of mental retardation, there are broad distinctions typically made between: a) cultural-familial retardation, characterized by mild impairment in response to environmental deprivation, and b) organic retardation, involving more severe impairment and emanating from organic pathology or genetic factors. "Mental retardation is chronic," they say, "and early intervention is needed to maximize developmental and cognitive potential" (Ammerman & Hersen 268). There are also broad distinctions made for those with mental retardation with autism; according to Rutter (2000), during the past 20 years or so, there has been an increasing number of family studies conducted that have attempted to more accurately delineate the precise nature of the broader phenotype of autism, together with identification of its boundaries. Taken together, the findings of this researcher into the broader phenotype of autism suggest that there is good evidence from both twin and family studies that the genetic liability includes patterns of social and cognitive deficits that are accompanied by circumscribed interest patterns that are very similar to autism in quality but are much milder; however, there also appears to be two fundamental differences between the broader phenotype and autism as it is traditionally viewed. According to Rutter, "Unlike autism, the broader phenotype is not associated with mental retardation and it is not associated with epilepsy. As yet, we do not know why that is so" (2000:4). While autism remains a condition better described in the scientific literature than it is understood, there are some recognized health and safety precautions which are discussed further below.

Health and Safety Precautions and Considerations.

The physical education setting is certainly not without its hazards, even for normally endowed children with no particular cognitive or physical limitations. This does not mean, of course, that students with autism cannot participate in such activities; it does mean, though, that PE teachers must be familiar with the condition and recognize that each autistic student will bring a unique set of needs and attributes to the classroom that must be considered in developing an effective, as well as safe, learning environment. For example, the overwhelming majority of physical education teachers will have a natural tendency to focus on competitiveness in their team sports and organized activities: "The goal is to win, and not to get together, have fun, and benefit from exercise" Bauman notes (5), and this overemphasis on performance and winning will serve to restrict opportunities for students with disabilities to be included in school, after-school, and weekend team sporting events.

Modifications to Physical Activity and Tips for Inclusion into General Physical Education.

Educators who have some experience with special needs students will require a different level of support and guidance than their newer counterparts. For example, a long-standing program in place at one high school cited by Nuehring and Sitlington (2003) provides an optimal education for students with disabilities, but it requires experienced educators to make it work. One autistic student, "Joshua," was able to be integrated almost entirely within the mainstream classrooms while receiving specific training for his unique needs at other times. According to Nuehring and Sitlington, this combination of curriculum combined with experienced educators virtually "guarantees appropriate programming" for these special needs students. In their study, "Transition as a Vehicle: Moving from High School to an Adult Vocational Service Provider," the authors report that:

Five years ago, Joshua came to Central High School at the age of 15 years. For Joshua's first 3 years, he was integrated into high school activities as much as possible. He joined a music class, participated in an adapted physical education class with non-disabled peers, and enjoyed lunch in the cafeteria every day. Within his special education classroom, Joshua was beginning to work on vocational tasks designed to increase his time on task, promote independence at jobs, and teach general work habits. His days were very well-rounded and included integration activities, functional academics, and vocational tasks (emphasis added) (Nuehring & Sitlington 24).

As noted above, this exemplary program requires teachers with significant classroom experience with special needs students; unfortunately, many schools may not enjoy this level of experience but there are some solid steps that can be taken to help ensure that special needs students and their teachers receive the support and tools they need to succeed. In their essay, "Converting Challenge to Success: Supporting a New Teacher of Students with Autism," Boyer and Lee (2001) report on the experiences of a new teacher, "Christine," in a self-contained classroom for six kindergarten students with autism and autistic-like behaviors. The authors describe the challenges of beginning a new program in her school, planning instruction with the new state instructional standards in mind, being scrutinized by parents and advocates, and coordinating documentation of progress and development of Individualized Education Programs (IEPs). According to Boyer and Lee, "Her challenges become successes through the support of an induction program that includes a mentor who also teaches young children with autism, insightful administrators, and school district resources" (75). Based on the experiences of this educator, Boyer and Lee offer the following tips for developing and maintaining a successful physical education program that specifically meets the needs of special educators and their students alike:

Take responsibility for understanding the Individuals with Disabilities Education Act Amendments of 1997 (IDEA97) and their implications for classroom teachers and special education students;

Acquire knowledge of special education forms, state and district accommodations for instruction and testing, the district's special education resources, the district's modified curricula for specific populations, and the district's alternate assessment system;

Collaborate with general educators and with occupational, speech, and physical therapists in planning and providing for services required by students;

Develop effective professional relationships with paraprofessionals, who work as partners in providing services to students;

Clarify the school culture around issues of inclusion and the role of special educators in advocating for their students;

Acquire knowledge of curriculum content that allows effective adaptation to the general curriculum that students may be accessing;

Determine the availability of assistive technology devices and of training to use them;

Develop a schedule that meets each student's needs for group and direct instruction based on assessments and the student's Individualized Education Programs;

Educate themselves concerning any complex medical procedures required by their students and their responsibility to provide or coordinate those procedures;

Document each student's progress toward IEP goals;

Collect data when working with students with challenging behaviors;

Develop a daily communication system between school and home (Boyer & Lee 2001).

Certainly, these are tall orders for any educator, particularly for a newcomer to the field, but these authors suggest that there are really no shortcuts to developing a successful program that can meet the unique requirements of special needs students: "Collectively, these are daunting tasks," Boyer and Lee say. "For Christine, managing the complex IEP process, with its intimidating legal aspects and scrutiny by parents and advocates, was paramount during the first quarter. At the same time, though, clarifying her place and that of her students within a school culture that was unfamiliar with autistic behaviors challenged her daily" (2001:76). Because autistic students may not be mentally retarded at all and in fact may have some superior attributes compared to their peers, it is important for PE teachers to carefully assess these students' capabilities before developing a plan of action; further, whatever approach is selected should be monitored to ensure that it is accomplishing what the teacher intended. Close and Matthews (1973) provide an early example of an adapted physical education program that is designed along a continuum of disabilities for boys from the New Britain, Connecticut, public school system (see Figure 1 at Appendix A).