First, let me start off by saying that I don't think there is such a thing as a perfectly behaved child. I am not a perfectly behaved parent, so that evens the score. But our children tend to be "naughtier" than most, because of their imperfect understanding of the world and other people. Many educated autistic adults explain that their behavior problems stemmed largely from lack of information. Wonderful research from Drs. Ross Green and Stuart Ablon have demonstrated that many behavior problem stem from a cognitive deficit expressed as poor flexible thinking skills. In their book and video, The Explosive Child, they discuss ways to teach these missing skills. In our house, when the boys were so far delayed in their cognitive and language achievements compared to norms, our focus was education, education, education. Help them understand what's going on, keep them from hurting themselves and others, and keep the behavior from negatively impacting their learning.
So now that both boys have achieved the high functioning ranges of the spectrum, we have a few behavioral kinks to iron out. The more we learn about the cognitive deficits causing this, the more our education can address these issues. Rather than merely trying to control the behavior from an ABA standpoint, we are trying to eliminate the cognitive difficulties that cause the behavior crises. As we learn more about these cognitive strategies, we will update this page.
Our philosophy from the Early Learner phase has been to keep away behavior triggers that lead to behavior problems (e.g. don't leave the child alone with a box of Cheerios), try to distract learners away from competing behaviors that interfere with education, and educate children in underlying cognitive and behavioral skills so that the behaviors don't occur. It is interesting to learn that even most behavior deficits in advanced learners stem from a lack of skills, rather than willful malice or control seeking. I am anxious to share more as I learn more about behavior management "the cognitive way."
Food for Thought
I believe that parents have a God-given obligation to teach their children language. This responsibility does not cease because an individual has learning difficulties. I'm not a buyer into the philosophy that people with spectrum disorders are on the "wrong planet." They are human and should be treated with humanity. They should be expected to achieve communication with the other humans on the planet. That includes verbal and non-verbal communication where possible. Parents also have a responsibility to teach their children socially acceptable behavior. Like all other human beings, when people on the spectrum are adult (assuming that they are capable of becoming responsible for themselves), they are responsible for their own behavior. This is basic parenting. Parents' rights to educate and socially train their children are universal. One person doesn't have the right to insist that another autistic child doesn't get educated because it is changing their "specialness." That's not their right. It belongs to the parents. They can be as special as they want, after they've learned as much as they can. Any insistence otherwise is a totally unfair guilt trip that is potentially devastating to already guilt-ridden and overburdened parents.
Nevertheless, intervention ethics should be constantly scrutinized.
When Everett (Evy) was first diagnosed at age two, I considered autism a life sentence. Evy was trapped by his inability to learn. Specifically, he had no intrinsic capacity to learn spoken or gestural language--a great handicap. Obviously, his social understanding was impaired, his behavior was becoming increasingly withdrawn and stereotypical, and he had some fine motor coordination challenges. He had a brilliant mind and loving heart that were being increasingly trapped by his lack of education in these areas. He desperately needed intervention, and I didn't know how to get it for him.
Enter my wonderful cousin, Joe. Cousin Joe had an autistic son--rather severely affected--and told me that intervention was available and effective. Up to the point of talking to Joe, I had tried different diet and vitamin therapies and succeeded only in watching Everett continue to lose skills AND turn slightly orange from all the Vitamin A I was wantonly giving him. I was living in Oklahoma at the time, and Joe said to me--get him ABA therapy, even if you have to MOVE to get it for him.
So I chased down an ABA school for autistic children and miraculously, it was within driving distance from my parents home in upstate NY. Some quick phone calls and research and I was able to secure him placement, move back in with family, and start services within a month. It was truly a miracle for my child.
Nevertheless, it was a starting point for us, not an end point. We stayed at the school for an entire year, and I was very pleased for the first 8 months. The teachers were generous and kind, while at the same time very forceful. They were doing the best job they knew how, but they allowed my child no control, even on the playground. Everything had to be structured or forced, and behavioral heirarchies of response (least to most prompting) were used to ensure that my child obeyed at all times. It was a disturbing undercurrent to the fact that my child was now learning and could label a hundred or more objects. But I didn't see that I had a choice. I felt as forced into the situation as my son. Two things changed my mind.
First, I decided I needed to learn more about ABA, and so I enrolled in a graduate level ABA course at Sage College in Albany, NY. The ABA I learned about in that course didn't resemble very closely the ABA I saw practiced at the school. I realized that there were choices in how to apply ABA--which prompting heirarchies to use, how to take data, how to structure teaching environments. Even more importantly, I learned that ABA isn't necessarily about HOW to teach, but rather HOW TO MONITOR your teaching with data to make it more effective. All of these procedures that were used so inflexibly at the school, could be used and adapted in response to how they affected my son's learning. In other words, ABA could be made to treat the individual child, rather than the child forced into one particular teaching method because we could track the data better that way.
The watershed moment for me came when I substitute taught for a day at this school. I was placed in the "severe" room--the room where children were placed when they weren't responding well to treatment. I sat there with a little girl, trying to get her to "touch dog" for the, I don't know, 500,000th time?? She had been at this particular labeling skill for an entire year with no progress. And no acknowledgement had been made, by looking at the data, that this particular teaching style was not working for this particular child. Instead, "touch dog" was prompted over and over again. And they complained that the CHILD was not learning!
Not long after, we had a two week break from school. In the absense of services, Evy began to blossom. Ethan had been diagnosed for 8 months or so, and I was contemplating him having to attend this same school. I couldn't bring myself to do it. The first day of Evy's second year at this school arrived, and he had learned enough to cry and tell me he didn't want to go. So for the first time in a year, I gave Everett a choice. He had the summer off. We started incorporating verbal behavior strategies, and enrolled him in the fall in a child focused preschool who was as eager to try new therapies as I was--Whispering Pines Preschool in Delanson, NY. Evy's miracles continued.
From that time forward, I tried very hard to never lose my perspective of my boys as individuals with the right to make their own choices. Choice and individuality became very important as a backbone of our therapy. We made mistakes, and we insisted upon the right to have socially acceptable behavior our goal in the home and community. We decided that the standards of behavior and individual expression that applied to our neurotypical son would apply to all of them. This meant that sometimes we had to insist on cleaning up toys, saying bedtime prayers, not cursing and not urinating on the lawn in front of company. Having standards of behavior in society and home gives people a framework for social interaction and leaves plenty of room for individual expression. My personal opinion is that it is demeaning to not expect capable autistic individuals to conform to the social norms of polite society. That being said, sometimes autistic behavior (stims, etc) by their nature do NOT conform to social norms. And here is where the ethical dilemma comes in. If the autistic learner is incapable of learning polite behavior, to what level to we accommodate that behavior? How many decisions do we make FOR them? How many times to we seek their input? I feel guided and inspired in my own decisions with my learners in my God given role as their parent. I feel that I have done the best job I can with respecting their rights as individuals. I will never forget the horror that one parent from Evy's first school expressed when I described my attitude about choice. He stated something like, "If I didn't control my child every minute, he'd be all over the place." But how then would he ever learn to govern himself? And isn't that the point?
I am not trying to tell you what to think. And I don't think that I've even articulated the issue very well. but there are questions that we need to ask ourselves rather frequently as we intervene with our children. Education is always desirable. But at some point in every parent's career, there should come a passing of the baton from our authority to theirs. We give them our knowledge and wisdom, but they create their own. As they should, if they can. The point is, we shouldn't assume that they cannot develop their own wisdom, knowledge, self-control or authority because they are autistic. Perhaps this is the last great prejudice that we need to help them overcome. We need to believe that they can govern themselves, and make sure our teaching doesn't deprive them of the ability and individuality to do it.
So I want you to think about these things, as well as this letter I found on the internet from a woman with autism. It expresses her frustration with people and societies expressing her opinions for her. Read it, and you will discover that this likely imperfectly behaved person has an impressive individuality and eloquence. She acquired the ability to express herself beautifully, which is a true goal of intervention in our home. I hope she has found the ability to have joy in her relationships, which is another goal of ours. Although I don't know her, I believe that the issue she addresses in this letter is going to become increasingly more important, as more of us succeed in teaching our children self expression. To read the letter, please click on the following link:
- Behavior Plans
- Ethan's Behavior Plan
- Evy's Behavior Plan
- Food Intolerance
- Getting Dressed
- Hand Biting
- Tips for Consistency and Success
- Toilet Training