ILLINOIS RECOGNIZES THAT PEOPLE ARE NOT CATTLE

I’ve been meaning to get this post up for a couple of days now, but I’ve been a little under the weather. So this one kind of simmered around inside of me, and the more it simmered, the madder I got that stupidity still seems alive and well when it comes to autism. Fortunately, at least in this case, stupidity did not reign supreme.

The story on the front page of the Chicago Tribune the other day leapt out at me: Shock therapy called cruel; kin disagree.

In a one-of-a-kind case in Illinois, a Cook County circuit judge has ruled that it is illegal to use electric shocks from a cattle prod to control the violent outbursts of a severely autistic man.

Bradley Bernstein, 48, who can speak only about 12 words, had received the shocks for two decades under a court-approved settlement reached in 1987.

But this fall, officials at his Chicago group home halted the practice, saying that it is inhumane and that a new state law forbids it.

The judge’s ruling on Friday was a victory for Trinity Services Inc., which runs the group home, and a defeat for Bradley’s parents, Fran and Robert Bernstein of Lincolnshire. The Bernsteins said Wednesday they may appeal the ruling.

The Bernsteins have argued successfully for years that the threat of the electric prod, which delivers a jolt like a bee sting, is the only way to stop their son from banging his head against hard objects or punching himself in the face until he’s bruised and bloody.

The only way?!?

In general, I believe that parental decisions about the care for their autistic children should be entitled to respect, provided there is a rational basis, and the parents have weighed risks against potential benefits. But what potential benefit is there in using a cattle prod ⎯ and I’m not even sure a cattle prod is appropriate for use on cattle ⎯ on a human being.

To be sure, self-injurious behavior is one of the most frustrating aspects of dealing with autism. Nevertheless, whether one views it as the result of a neurological or cognitive difference or as the result of inflammatory processes with a biological cause, treating it as a bad habit that one can be trained out of through the use of pain is . . . well, stupid. And obviously it was not the answer for the Bernsteins as their son continued the behavior continued despite years of prodding.

The use of shock as an aversive had, in the case of Bradley Bernstein, been given a legal blessing in 1986, when the family won a round with the Illinois Department of Human Services based on it being a viable alternative to psychiatric medications to which he was allergic. Using the prod apparently did not sit well with Trinity Services, who administered the group home where Bradley lived. A new settlement was reached in April, allowing Trinity to gradually wean Bradley off of the prod. But by that time, Trinity’s executive director had caught the ear of the right people. After two years of effort by disability-rights advocates, the Illinois Legislature passed a law providing that treatment plans for people with developmental disabilities must not include electric shock or other aversive punishments, such as withholding essential food and drink or causing pain or humiliation.

The legal battle will go on; the Bernsteins argue that the law should not apply to a settlement reached before the statute’s passage. For now, at least, Bradley is safe.

The question I have that the press hasn’t answered, is whether Bradley’s wishes were heard by the court. Was there even an effort to discern those wishes? It is clear that Bradley is profoundly autistic, and he is of an age at which the use of alternative communication methods are not necessarily common. But there is no indication that he lacks sufficient mental competence to have a say in his treatment.

I will do all in my power to make sure my son, as an adult, never lacks the ability to make his wishes known, and that he will be taken seriously when he does so.