The Court of Expectations Is In Session
It is June 12th, 2004. The court of expectations is now in session.
The court case is Dowell v. The State of California. In this court case, I shall act as witness testifying on the side of Dowell.
Caroline Dowell is the mother of two autistic sons—Harry and Derek Dowell. She has been receiving special services from the state of California to help her children. But during the time her sons qualified for such services, they demonstrated a noticeable improvement in their behavior. They are now more functional than they were before. Thus, the state is considering removing their services because they no longer qualify.
Is this a legitimate for these children to lose their services? In this case, I don’t really think so. Here is my argument supporting the reason for why these children should still receive their services.
This was a letter presented to the honorable judge in this matter:
* * * *
To whom it may concern:
I have been asked by Harry and Derek Dowell’s mother, who contacted me because she bought my book, “Out to Get Jack,” to write a letter arguing the case that Harry and Derek should still receive services. My argument is based on personal experiences and observations with other children, as I have never met her, nor have I met Harry and Derek. I am only 15, have no credentials, and cannot be called a traditional expert. But I do understand what it feels like to be autistic.
I have been informed that Harry and Derek Dowell have been receiving services from the state of California because they are autistic and therefore qualify for such services. I also am aware that those same children may lose their services because they are not as dysfunctional as they once were, and regardless of whether or not they are still autistic, they do not show the symptoms they had previously.
From the information I have been told, this conclusion was based on the following assumption:
The severity of a child's autism and the progression from a lower-functioning to a higher-functioning child is measured by how he or she behaves.
However, based on my life experiences, I have come to realize that autism is not a behavior problem per se, and that an autistic child’s ability to behave normally does not necessarily correspond to the severity of his disorder.
While there's no denying that how an autistic child and a normal child behaves is vastly different at times, behavior measures only what can be seen—without any consideration for the internal effort it takes for the child to behave normally, the stress he is under, or his understanding or lack of understanding of why he is expected to behave a certain way. Outward behavior also fails to measure the amount of effort or intervention that was needed to enable that child to behave “normally” or the amount of support he receives in these efforts.
Before Harry and Derek’s services are taken away, it is necessary to ask:
1. What efforts have been made to determine the current needs of these boys, and what will happen to their behavior if their current level of support is removed?
Everyone, by being alive, has needs that must be fulfilled in order for them to function properly. This is the central argument of the ideas published by psychologist Abraham Maslow, in his "hierarchy of needs." If those needs are not met, they will not function. A person who has not eaten for three weeks is going to be dysfunctional no matter whether they are normal or autistic. Eating is a physical need.
But people have mental needs as well.
Thus, autistic children have mental and physical needs. But because autism is a disorder that changes the mental perceptions of a person, their mental needs in order to allow optimal functioning are different. Sometimes, since those needs are so vastly different or not even known, it is often a very difficult task to satisfy those needs.
When you are starving and pass out as a result of starvation, that behavior is directly related to the fact that your need to eat was not met. Likewise, when an autistic child is not functioning in a classroom that is because his mental needs are not met.
Now let’s say that these two children have certain essential mental needs in order to function properly and succeed. And let’s say those needs are not met in the classroom. I experienced this frequently. One perfect example is my sound sensitivities. I am terrified by any sudden loud sound. Therefore, one routine event at school that was horrendous for me was the fire drill. I would be terrified every single day of the month, because I knew that any moment that alarm could go off, and often shivered in my shoes when I thought there was a greater possibility of the alarm sounding, for example, because it was a sunny day and a good time for a drill. Therefore, I was happy every time it rained, and I feared sunny days. I had a need to know in advance, if possible, when the alarm would go off.
I revealed this to my mother and she talked to the principal, who agreed to tell me in advance before she would conduct a drill under the condition that I not reveal it to anyone else. One time she did tell me, and for a month I was no longer scared—for I knew she’d tell me before it happened. Finally my need was met, and I was able to function better. However, this promise was never kept again. After that one time, I was never alerted of a drill again, and I reverted to being terrified again. I was just as dysfunctional as before. When a smoke detector broke in the school and the possibility of hearing the fire alarm go off as a result was announced, I had a panic attack in front of my class and the substitute teacher. I went to the office in a severe state of distress.
I have no idea why the promise was broken. But let’s assume that I was no longer told in advance because of the assumption that “since he could deal with it once, he doesn’t need to be told in advance again.” As you saw, my terror returned when the need was no longer met, when my “special service” was withdrawn, so I essentially became “dysfunctional” again.
Autism is believed to be a disorder determined by abnormal behaviors. It is not. It is a disorder determined by abnormal thought processes and perceptions in the mind that cause the mental needs of a person to be different. This might seem like a shock but think about it for a moment--those abnormal behaviors are not coming out of a vacuum. They are emerging because of a different response to a stimulus in the child's environment created by the child. But the autism is not producing those behaviors out of a vacuum. Instead, the autism is producing a child that perceives his environment differently, and thus responds differently.
When those needs are not met, abnormal behaviors are a logical result (though obviously not always. These behaviors are the product of autism, and they vary depending on the needs of each child. But because the true measurement for autism lies in the cause of those behaviors, not the behaviors themselves, you don’t have to be low-functioning to be autistic. Even if those behaviors disappeared, the autism does not disappear. Rather, when the needs that weren’t being met are now being met, the behaviors often disappear. Although you use the change of behaviors to justify disqualifying those children from services, the change of behaviors actually is grounds to allow their services to remain. Why? Because it means that they are responding to those special services because needs are met with those services that aren’t met anywhere else. I have seen very autistic children act like normal kids when all their needs are met, only to see them revert back to autistic children when those needs are no longer met.
In reality, there is no such thing as being autistic “enough” to deserve help. Autism is autism. All autistic people have abnormal processes—what determines their functioning is the way those processes affect their responses to events around them. The answer to dysfunctional behavior lies in keeping special services. Those services are the reason why Harry and Derek are now functioning, and if those services are taken away, Harry and Derek might revert to being dysfunctional again. At that point, they may in fact be able to “requalify” for having services again, after needless suffering on the part of the boys and their parents.
This leads us to the next question.
2. What effort has been done to determine the amount of personal energy required to perform such functional behaviors?
In the fifth-grade one of the kids in my class was a girl named Sally. She suffered from cerebral palsy, and thus had to move around in a wheelchair wherever she went. She could not walk or stand without intense effort. She was also one of the only friends I had in that class.
That year she spent a lot of time learning how to walk with a walker. She did this because she had a goal that she was striving for—to walk, with the help of a walker, at her fifth-grade graduation, to the podium where the principal was giving the diplomas, all by herself. At graduation, she did this successfully. She walked with the help of her walker to the principal, got her diploma, and then walked back.
To the average person, walking is very easy, and the ability is taken for granted. But to Sally, walking to the principal to receive her diploma was like walking up a mountain, and she was very tired as a result.
Now suppose her therapist decided that, since she was able to walk with her walker that small distance, she no longer deserved a wheelchair. Suppose her wheelchair was taken away from her because her “behavior”—walking to receive her diploma—indicated that she no longer needed the chair. Would that be fair to Sally? Would it even be appropriate? And what would that tell Sally? Wouldn’t it tell her not to try so hard, since her efforts would only be punished?
Although everyone who knew Sally knew that this accomplishment was a magnum opus, it seemed as if she walked effortlessly. However, this goes to show that just because we see a child functioning better does not necessarily mean that child is no longer dysfunctional. Some autistic children function beautifully and act normally, but only by massive internal stress and personal effort.
Just because we see Harry and Derek functioning better doesn’t mean that they are no longer “dysfunctional.” It may be that the only reason why they are functioning is because they are doing so under tremendous effort, and it is very stressful for them to do so. They also may revert to being dysfunctional later during the day and fall apart. Or they may only function better when the people in power who determine whether or not they have services see them, when they may in fact be just as dysfunctional at home when no one is observing them.
Because of this tremendous effort, it is a terrible ordeal when they have to learn how to function at a higher level or their environment is suddenly changed, because, while it may appear to you that they are functioning better effortlessly, to them it may be the equivalent of walking up the mountain.
Or they may, in fact, be functioning better and can do that with ease, but they still have problems that may come up in the future that are not seen now that may not be properly solved without such special services. As Harry and Derek get older, new issues are going to arise, and the fact that they may be doing well now doesn’t mean they’re going to do well tomorrow.
It may also be necessary for them simply to rest before going on to the next step. You may stop to rest when you’re halfway through a book. Even though you’ve still got another half to read if you want to finish that book, that doesn’t mean that approaching the halfway point is not a legitimate resting place.
For those reasons, I ask you not to take away Derek and Harry’s services. Don’t punish them for their efforts and their accomplishments. Please don’t do anything before you answer the two questions asked above.
So, why is this a court of expectations?
When the children were less functional, they could not do as many things as they can now because they are more functional. Therefore, people expected less things from them. But now that they can function, people’s expectations are raised, and one of the expectations debated here is the expectation that they can function normally in school.
In other words, is it justified for the school to raise their expectations or not?
[Update: As of April 2006, I received a reply from the Dowell family. They won their case. Thanks to my work and the work of other therapists and people who advocated for the Dowells, the Dowell children are still receiving the services they need when they are in school.]