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.
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.
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 mental retardation, are not always able to comprehend what it is to make a decision, or to understand what they are being asked to do. Again, it is essential that each person be treated as a unique individual, and that their level of understanding be taken into account as families sit down to make decisions about where people are to live.
Much of what has been said about choice in relation to where a person lives can also be said about where they work. In the arena of vocational training and placement, a continuum of services is required to most appropriately serve people with autism. Vocational options range from structured workshop setting to an individual job in the community with minimal assistance. Obviously, there are options between these two extremes such as enclaves of individuals working in a business with a trained job coach/supervisor.
During the past several years, the Autism Society of North Carolina has provided vocational services to individuals with autism utilizing supported employment. The job coach model (where the job coach helps locate a job, trains the employee, and then fades out) has proven successful for many higher functioning persons. Although they continue to need long-term support, these persons function fairly independently on their jobs. However, the majority of persons with autism need more support than the job coach model offers. For this reason, enclaves are also needed, and the Society, in coordination with Division TEACCH of the UNC-CH School of Medicine, operates enclaves. In the enclave model, there is daily support given to several persons with autism who work in a business in the community. However, some individuals need even greater structure, so other options such as mobile work crews, small businesses, and sheltered workshops must exist as well.
Given the diversity of skills and deficits found in autism, a broad range of vocational options are essential in order for persons with autism to maximize their potential and independence in the community.
The Society stands firm on the importance of existing recreational facilities providing programs, which appropriately serve children and adults with autism. Many persons with autism are fully capable of enjoying recreational opportunities provided by existing camps, parks, recreation centers and other facilities, if they are accepted, and if accommodations are made certain behavior and perceptive differences. It is unfortunate and unacceptable that even publicly operated programs often do not accept persons with autism, or refuse to make sometimes minor changes to accommodate persons with autism. This not only affects the individual, but also the ability of the family to plan leisure activities that all members can enjoy.
Another essential option that assures that parents and persons with autism have choice is facilities specifically developed and programmed for persons with autism and other developmental disabilities. Particularly for persons whose disability is serious, a special setting provides the type of structure, safety, and opportunities that cannot be provided in other settings. This is particularly true of camping.
Camping provides incredible opportunities for enjoyment and exercise, and is often a very exciting time for both children and adults. This is no less true for most people with autism. However, there are special concerns that a camp developed specifically for persons with autism can provide. One of these is safety. Persons with autism are often unaware of dangers and hazards, and will eat and drink poisonous substances, toxic plants, cleaning supplies, and household chemicals. Additionally, with many persons with autism, the ability to feel pain does not exist. These are issues that make a special camp very important.
Persons who work with persons with autism must be intensely trained to properly respond to very unusual behaviors, inconsistent skill levels, and baffling symptoms. Also, persons with autism need a highly structured schedule that assures consistency from day to day in order to make some sense of the world that seems chaotic and random. Additionally, intense supervision is required of many campers with autism, often requiring one-to-one supervision to ensure safety. And finally, a controlled environment that alters and controls noise and other stimulations is essential for many persons with autism who may be annoyed, distracted, or even pained by what is happening around them. All of these requirements are best met in a special camp environment.
One additional issue that can be dealt with effectively in a special camp setting is communication. About one half of all persons with autism are unable to speak, and some appear to be unable to understand verbal instruction. Alternative means of communication must be used. Any program that serves persons with autism must be geared to communicate with participants on an appropriate level that is meaningful and functional.
Summary of Position
The Autism Society of North Carolina is deeply concerned that artificial limits are not placed on what a person with a disability can accomplish, and that no one's potential to be a part of mainstream culture be diminished. We vigilantly support efforts to remove barriers that prevent persons with all disabilities from participating in community life, and integrating as fully as possible into all aspects of American culture. And we are committed to erasing the fear and ignorance that motivates so many of these barriers. But we feel that the choices that families need to help persons with autism to reach their potential and maximize their participation in our culture must not be limited by any philosophy or ideology. The Autism Society of North Carolina vehemently opposes any effort by individuals or government agencies to limit or eliminate the availability of self-contained classrooms, congregate supervised living arrangements, a broad range of supported employment options, or special recreational facilities which are essential to the growth and maximum potential of persons with autism. And we strongly oppose efforts to limit or redirect resources needed to assure that these options exist. We must not sacrifice the needs of those person most seriously affected by disabilities because the tools needed to enhance their lives do not fit into someone else's philosophy. The needs of the individual must come first.
A Position Paper of the Autism Society of North Carolina