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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Positive Behavior Supports

Mike Mayer

Do you have some advice about behavior issues and first steps that may be taken?

Mike Mayer: The very first thing that I always recommend is to make sure that they get checked out physically really well. One of the things that happens for people who have severe behavioral challenges is that we assume that it's a simply a reaction to the environment rather than there possibly being a physiologic cause for that. A lot of people when they get sick, if they don't have traditional language, if they don't even know what words to use, may act out, the same way we might act out if we've got a really bad headache and we snap at our partner or whatever. Not because they've done anything, but because we've been fighting the pain for so long and it's not going away and we're frustrated and all those other kinds of things. So the first thing I do—and this goes to some court cases and some things along those lines about, Stickney vs Wyatt, and things along… that we need to be ruling out that there's a medical etiology or a medical cause behind this.

The second thing I think you really need to take a look at is, is this possibly a manifestation of a severe emotional disturbance or a mental illness. And it wasn't that long ago that we didn't believe that people who had intellectual disabilities could actually have a mental illness. There's some of the most famous names in our field were saying, "No it's not possible," and when they later turned around and said, "Oh, wait a minute, I was horribly wrong." The problem is, a whole lot of people didn't hear the second part, the, "Oh, I was horribly wrong."

So, is it depression? Is it anxiety? Is it schizophrenia? Is it an obsessive-compulsive disorder that is biochemical in nature? And I'm not trying to push medicines. I'm trying to say that we can't behavior manage a pancreas into creating more insulin. We can do things to help manage our weight and do our exercise and, and eat correctly and all those other kinds of things to help manage the insulin production in our system, but we still may need an injection. We still may need to take an oral medication to help our pancreas do what it needs to do.

The same thing is true with the brain, and we forget that the brain is an organ that can dysfunction in episodic ways. In much the same way we can get the flu, you might have an episodic mental illness or severe emotional disturbance. So it's… part of it is, is teasing out… Is there stuff we can do to help with self-esteem, with not feeling so depressed, with not feeling so scared about things? So it's stopping and taking a look at that.

The next thing that I would suggest is what are they trying to do that they don't seem to be able to do? Maybe it's frustration, that they're trying to accomplish something but, for whatever reason, they're not able to do it. Can we find a way to help them be able to do those things?

And the last thing I would suggest as an early step is, are they trying to tell us something and we're just completely missing it? Is it their best effort with language? That they are processing, that they're trying to communicate, and say, "You know, I'm really lonely" or "I'm bored out of my mind," or "I hate going to that day program," or "Please don't make me ride the bus again," or "I don't want to go to bed at 9 o'clock at night and I don't want to take a bath before I go to bed. I want to go to bed at 10 o'clock and I want to take a shower when I get up."

And we make all kinds of rules and restrictions and programs and things to make it, sometimes make it easier for us, but it makes it hell for the person. And so I guess what I would say is let's really spend some time getting to know the person, if they're not a family member or whatever and, even if they are a family member, rather than assuming you know the answers, spend some time to say, "Okay, pretend I don' know anything, what is it that they're trying to tell me?"

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This project was supported, in part by grant number 2001MNSCDD-03, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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