Journal of Autism and Developmental Disorders, VoL 12, No. 1, 1982

L e t t e r to t h e E d i t o r

DISSENT FROM NSAC DEINSTITUTIONALIZATION RESOLUTION

I cannot let the arguments published by proponents of NSAC's deinstitutionalization policy in the Parents Speak column (September 1981) stand without rebuttal, since the implications are that placement with nonhandicapped people is best for all autistic people and that there are several successful integrated residences around the country proving this theory.

In casting about for examples of such placement that can be deemed successful, we raise the question: Where can we find families of normal people who have accepted, or would accept, severely atypical, autistic people in their midst? The answer comes back: Most autistic people were born into families of normal people, who, even with love, motivation, and, in some cases, training, could not tolerate for an extended time the atypical member in their midst. This is not a reflection on the worth or capabilities of the parents; rather, it is a testament to the enormity of the problems, the stress, the grinding, unending demands that are beyond the sustained endurance of most normal people.

Providing and adhering to the extreme structure of living conditions required by some autistic people if they are to remain at home results in the denormalization of the home at the expense of the other family mem- bers. The family is forced to seek residential placement for the handicapped member in order to survive serious damage to home life and to the other family members. When good alternative services are available, the change from residential living at home to an appropriate, segregated facility can result in better services for the handicapped member, and, at the same time, a return to normal living for the rest of the family.

Placement among their nonhandicapped relatives in a community- based setting--their home--was not successful, then, as judged by the number of autistic people who have had to be removed from their homes, as well as by the number of normal families who are desperately seeking placement out of the home for their autistic member.

Supporters of the present NSAC policy on deinstitutionalization are using, as examples of integration with nonhandicapped peers, group

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96 Letter to the Editor

homes like The Jay Nolan Center and classes like those of TEACCH, which, clearly and undeniably, are segregated units located withim a com- munity or school of nonhandicapped people, with occasional interaction. Despite their self-description as facilities which are totally integrated with nonhandicapped peers, they are perfect examples of segregated, but appropriate, community-based facilities.

Perhaps a redefinition will clarify and then resolve the differences between opposing forces. After all, on the issue of segregation/integration we are not in opposition to what our opponents are doing in the models cited; we are opposed to what they say they are doing, which is quite dif- ferent from the reality. The disparity between actuality and theory can be misleading to unknowledgeable people who will accept what they say, at possibly great future cost to autistic persons.

A redefinition, if also qualified as to its limited use within a range of alternatives, would then be acceptable to me.

Amy L. Lettick, L.H.D Director, Benhaven

RESPONSE

In your letter you elaborate on some of the complications that arise when handicapped people are required to live with normal people. While these considerations were by and large avoided in the wording of the NSAC deinstitutionalization resolution, I thought that both sides were represented in the Parents Speak Column in the September 1981 issue.

The thrust of your comments suggests that your concern is that the zealousness from which the NSAC resolution was derived is likely to oversimplify the issues it intends to resolve, and thereby runs the risk of being unproductive.

I fully agree with your concern and regret that we did not express a satisfactory resolution in our published discussion.

Eric Schopler Editor