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Autism and the Importance of Choice


By: A Position Paper of the Autism Society of North Carolina

Autism is a severe disorder of communication and behavior. It is a life-long, developmental disability that prevents individuals from properly understanding what they see, hear, and otherwise sense. Common symptoms include difficulty in understanding social relationships, marked restriction of activities and interests, and the absence or impairment of speech.

Autism is a syndrome; individuals may exhibit several characteristics of autism, but not others. Autism ranges from mild to severe, and approximately 75% of persons with autism also have some degree of mental retardation. Many persons with autism also have significant seizure activity.

Some persons with autism understand enough about the world around them, and are able to interact to some degree in a social context, so that they can participate significantly in their own life decisions, and live and work with family and friends. This level of integration in the community was considered unthinkable twenty years ago, and came only because of the monumental efforts of parents and professionals in North Carolina, and across the nation. On the other hand, there are also persons with autism who have almost no understanding of the world around them, and whose social and communication deficits severely effect their ability to make decisions and integrate fully into a community in a way far different from someone who is challenged by mental retardation alone. And there are many thousands of other persons with autism who fall at some point in between these two extremes.

And this clearly demonstrates the need for CHOICE. Because persons with autism vary so much in their comprehension, skills, and behaviors, there must be a wide range of educational, residential, vocational, and recreational options available if each individual is going to have the opportunity to reach his or her greatest potential for independence, productivity, and happiness. Individuals and their families must not be confined to alternatives that only meet the needs of some persons with autism. Nor should they be forced to choose only from alternatives that comply with a specific ideology about what all disabled persons should do or should be able to do. Persons with autism and their families should have the right to choose from a variety of opportunities just as persons who are not disabled do.

It is therefore essential that educational options be tailored to the real needs of each child, whether it is a self-contained classroom or mainstreaming, or somewhere in-between. And it is essential that residential options include group homes, supervised apartments, and independent living, as best serve the person's needs. What is important is not whether it sounds good, or fits a particular philosophy, or makes someone else feel good.

The Autism Society of North Carolina has struggled for many years to ensure that persons with autism are not limited by the low expectations placed upon them by many people in both the lay and professional communities. We must not limit a person's potential because it is simpler to place them in a restrictive environment. But, we should also not limit a person's potential or create an uncomfortable living environment for them by forcing an individual into an educational, residential, vocational, or recreational setting that is too unstructured to meet their needs, just because we may like how "normal" it seems to us. Persons with autism, and their families, have the same right to choice as do all other people.

Education

Children with autism usually need a highly structured learning environment, which helps them begin to understand the world around them. Without this structure, most autistic students are unable to process information in a way that allows learning to take place. For some students, a regular classroom can provide enough structure, if the child receives additional assistance. The Society fully supports mainstreaming whenever it serves the best interest of the child, as it places him or her in a very unrestricted environment, allows greater interaction with other peers, and can create a smaller burden for the taxpayer.

Some students with autism need greater structure to maximize the benefits of the educational system. The size and amount of activity in a regular classroom is too distractive, and special needs such as toileting and working on the modification of inappropriate behaviors is not feasible in a class of 20 to 30 students, even with one-on-one assistance. The need for the child to focus, and the requirement that each activity be somewhat shorter than activities or modules from which most children learn make a self-contained classroom the appropriate choice for some children. For many children, it is the self-contained classroom that has provided the ability to both learn and develop social skills, which permit the individual to live and work in the community.

It is easy to say that all children should be "mainstreamed." But that again is treating all persons as if their needs and solutions are the same, and narrowing the choices available to parents. Choice gives parents the opportunity to seek what is best for their children.

Residential

Each of us wants a place to live that is comfortable, safe, flexible, and best suited to our needs and the needs of our family. Persons with autism deserve no less. For many years, there were two primary choices for persons with autism: the parent's home, and institutions. Fortunately, the institutionalization rate in North Carolina is under 10%. And home is no longer the only other option.

Living at home can be an appropriate option for many persons with autism, and should not be considered so unusual, as many adult children still live with, or return to live with their parents. And there must be adequate supported living services available for these families. But other alternatives are essential.

Group homes have proven themselves to be safe and comfortable for many persons with autism. Despite charges by some that group homes are not "normal", group homes provide a structure of daily life that is helpful and comfortable for many persons with autism. Without this structure, many persons with autism would be unable to perform many of the daily living tasks they now assume, and would need greater assistance. Thus what may seem like a more restrictive environment actually becomes one wherein the person is more able to function normally.

Group homes also provide a structure to address behavior problems that might otherwise, and at an earlier time, have meant institutionalization. And, in contrast to charges that the provider first builds a group home and then goes looking for residents, many group homes are constructed and provided oversight by groups of local parents who are responding to an already overwhelming need from the community.

Other necessary alternatives include supervised apartments, and supported community living programs. In some cases, persons with autism can live in the community in their own home, or with friends. All of these options should be available.

Within the context of choice, one must ask who makes the choice. We feel it must be a collaborative effort between the individual and those most significant to him or her, usually the family. And it is the family, along with support of a trusted professional, who can best determine to what degree the individual understands decision-making, and the consequences of decisions.

It sounds wonderful to say that all disabled people can make their own decisions. But, once again, that assumes that all disabled people have a certain level of understanding. Persons with autism specifically have difficulty with perception and understanding. Persons with moderate to high levels of autism, combined with