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PERSPECTIVES ON AUTISM Working Paper Lars Perner, Ph.D. Addressing the needs of individuals with autism involves a number of hard choices which are often decided in large part by values held by various stakeholders. Even individuals within a given group may hold different passionate views—e.g., different parents have strong but different views on the appropriateness of using medications, dietary interventions, and various cognitive approaches to address symptoms of autism. It is not reasonable to expect all individuals to agree on all issues and choices, and is it is not the attempt of this essay to mediate between different groups. It is, however, hoped that an explicit discussion of perspectives held by different individuals or groups will help promote a better mutual understanding and better relations between groups that have a history of being uncomfortable with each other. Further, it is hoped that an explicit discussion of perspectives held by different individuals will help stimulate us all to consider explicitly the forces that have shaped our views and what we might be able to learn from others who have different backgrounds and training. Different groups of individuals who attend autism conferences come with very different experiences, often based on contract predominantly with vastly different groups of individuals affected by autism and the very different settings in which the effects of autism are addressed. As such, we each tend to focus on selected pieces of the puzzle, and we miss an opportunity to consider aspects of autism that may ultimately prove useful in our settings. Numerous perspectives on autism exist, and such perspectives will, of course, vary even within descriptively similar groups. No claim is made that the groups and roles identified constitute an exhaustive list, and we hope that members of the audience will contribute insight into additional perspectives. Certain significant groups of individuals and stakeholders are identified below. Each brings unique insights that are often not fully realized by other groups, and each may fall victim a view formed through selective exposure to the manifestations of the autistic spectrum. These groups are listed in no particular order. Specialist medical practitioners. Individuals on the autistic spectrum vary tremendously in the behaviors, thinking patterns, interpersonal relations, and other challenges that they exhibit. Some individuals are receptive to interventions from parents and primary educators. Others, however, exhibit severe problems that parents, educators, and primary care physicians have difficulty addressing. As a result, these individuals may be referred to medical researchers, often in university settings, and this is where “the buck stops.” As a result, many medical researchers may have little time left to treat individuals who are less severely impaired. Although such professionals are, of course, likely to be aware of their selective exposure at a conscious level, certain rather discouraging patterns are likely to be reinforced. Teachers. Teachers who deal with students on the spectrum vary tremendously in the challenges they face and in the resources available. Some will see one or a few students on the spectrum in a mainstreamed environment while others will see students in a special education setting, whether focused primarily on students with autism or dispersed among students with other learning disabilities. There are also great differences in the training and experience teachers have. All, however, are likely to face very heavy workloads and a responsibility to accommodate several or even many students at a time. Thus, despite the best intentions, the amount of time available for each student is limited. Students on the spectrum vary tremendously in the way they function and in kinds of support needed, and teachers are likely to be aware of this. However, because of limited time and resources, there may be strong pressures to treat develop “rules of thumb” and preferred methods of treating various students. This problem may be compounded by pressures from administrators who may lack first hand experience with the actual challenges faced by students on the spectrum. Parents. It is by now widely acknowledged that parents are likely to know much more about effective methods to address the needs of their child than any “expert.” In addition to what has been learned by experience, however, parents often face an overwhelming task of having to learn about a large number of issues in autism. Parents of different children can often be great resources to each other in sharing experiences and insights. However, because each case of autism tends to vary considerably, with some children showing traits that are diametrically opposite to others who share the same diagnosis, parents often develop a perspective on autism based in large part on the experiences with their own children. Thus, it is important to recognize not only that ideas expressed by one parent to another may need to significantly adapted, and possibly discarded entirely for a different child, but also to show sensitivity in not being overly assertive in advice given. Individuals on the spectrum. Individuals on the autistic spectrum help us understand thoughts, perspectives, and experiences of those personally affected by autism. There is a rapidly growing list of writings by very articulate individuals on the spectrum such as Donna Williams, Temple Grandin, Liane Holliday Willey, Stephen Shore, and Jerry Newport. Each provides a perspective that those “outside” the spectrum cannot hope to intuit. To the extent that there now are great opportunities for individuals on the spectrum to meet and exchange ideas at conferences, “spectromites” today have an increased perspective of how the experiences of others who face autism differ from their own. Nevertheless, each individual’s perspective is likely to be heavily colored by his or her own situation. Further, there may be a tendency to have unreasonable expectations of accommodations that are “owed” by the rest of society. The more high functioning individuals, especially, may also have a tendency to “romanticize” autism by glorifying center traits of the autistic personality while overlooking or denying serious challenges that are presented. Biomedical researchers. It is by now widely accepted that autism is, at least in very large part, caused by physiological differences in neurology rather an arrested development attributable to the environment. It is clear, for example, that autism is much more likely to correlate between identical rather than fraternal twins. Recently, a great deal of progress has been made in isolating genetic areas that are likely to explain autism. Further, while pharmaceutical treatment of autism has not yet been able to present a “cure,” or entirely address symptoms, significant progress has now been made on the potential of various types of medications to treat various symptoms. Physiological researchers are not likely to claim that other approaches to the study of autism are not important. Nevertheless, because of the heavy workload that faces an active researcher, it may be difficult to find time to keep up with developments in based on other approaches to the study autism. Counselors and psychologists differ in their extent of specialization. Some treat a wide variety of clients with different challenges, and some make the autistic spectrum a large part of their practice if not an exclusive specialty. These professionals are likely to see a large variety of clients whose conditions will be manifested differently. With increasing experience, counselors and psychologists are likely to sense common patterns and recognize distinctive ways in which individuals are affected. However, counselors and psychologists often see clients only in office or school settings. It is well known that behavior often varies tremendously across settings. Some children, for example, are able to behave well in school but return home with coping abilities largely exhausted. Further, for economic reasons, the time available for each person is often limited and individuals on the spectrum, in particular, may find it difficult to “open up” to a stranger. In the case of children, consultations with parents and teachers may help fill in the “gaps,” but large parts of the client’s life tends to remain hidden. Theoreticians. Autism is a rather perplexing condition that appears to affect individuals in seemingly contradictory ways. For example, while many individuals have great trouble dealing with abstractions such as metaphors, they may simultaneously have impressive writing skills and create very innovative expressions (e.g., Tony Attwood’s example of “tidying down” a room). Further, it is perplexing why there are certain areas where individuals on the spectrum tend to either excel or have great difficulty. Some, for example, are completely lost when it comes to following maps while others have exceptional spatial abilities. Uta Frith has written generally on the big picture in autism, and Simon Baron-Cohen provided more specific theory, for example, in the area of theory of mind. The enigmatic quality of autism affords an opportunity for great intellectual stimulation which can make inquiry very rewarding for the curious mind. Theory, however, often sounds rather esoteric and frivolous. Parents and practitioners may reasonably be skeptical that it be helpful in addressing their very real problems. It is worthwhile, however, to keep in mind Kurt Lewin’s observation that “There is nothing as practical as a good theory.” By understanding the “big picture” of autism, we better design interventions that address the challenge of autism in the “whole person” rather than proceeding with “piece-meal” treatments targeted at specific symptoms. Panel member Lars Perner, for example, focuses on developing means to understand paradoxes of autism. Despite the value of theory, however, it can be inherently subjective and it may be overly colored by the thoughts of one individual. Also, theoreticians—even those in institutions that do not have adequate construction budgets to afford ivory towers—are not forced to grapple with the realities of resource limitations in therapeutic settings. |
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