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Guest Voice: A Mother's Perspective

Kit Weintraub

 

Recently, ASAT learned of material posted on the Web written by Michelle Dawson. While it is not ASAT's usual policy to address every opinion on the Web that we find objectionable, fallacious, or dangerous, the level of animosity toward parents and professionals seeking Applied Behavior Analysis services for children is so high in this material, and the extent of misinformation regarding ABA seems, in our opinion, so misleading and harmful to families, that ASAT has elected to publish a response from someone on the "front lines:" a mother fighting for her children. Kit Weintraub, mother of Emily, 10, and Nicholas, 7, is a Board member of Families for Early Autism Treatment (FEAT), Wisconsin.

My children have autism; they are not "autistics." What's the difference? The difference is that autism refers to a neurological disorder, hereditary in nature. Autism, according to the vast majority of medical experts today, causes severely abnormal development, and without appropriate treatment it can condemn those affected to a life of isolation and dependency. "Autistics" is a rather new politically-correct term that I find troubling; it is a label that attempts to define people with autism as members of an elite group of human beings who differ from the rest of us only in terms of their unique talents and their superior way of experiencing the world.

Recently, I learned of self-proclaimed "high-functioning autistics" who are increasingly making themselves heard, claiming to be a voice for the autistic population. These people imply that our children's autism is somehow one variation of human personality; that autism is not a disorder and therefore should not be treated with medication or scientifically based intensive behavioral intervention. "Autistics" (among whom they include our children) are who they are, and are not willing parties to changing their autism. Autism is the "very core of their being". Any attempt to bring "autistics" closer to the realm of normalcy is ethically wrong; it should be condemned. Parents are depicted as selfish perfectionist control-freaks (shades of "refrigerator mothers!"), and professionals who have devoted their life to helping our children are painted as cold manipulative child-abusers.

Michelle Dawson's voice is one of the more strident of this movement. I do not know her, nor where she is from, nor what her background is. Frankly, after reading her essay, I have no desire to engage in any debate with anyone of such extreme and ideological views. However, for the sake of my children and other children who have autism, I feel it is important to address the assertions she has chosen to broadcast on the Internet about "autistics." She herself claims to be autistic, but it is not clear who, if anyone, diagnosed her with the condition; she never explains the circumstances of her diagnosis. Is she autistic? She appears to be educated and highly verbal (although her endless, repetitive arguments do cry out for some serious editing). Moreover, while her continuous bashing of ABA and its practitioners is full of inconsistencies, leaps of logic, and personal attacks, one obvious reality that emerges from her meanderings is that she is not at all like my children, or any of the children I know who have autism.

Yes, I know, autism is a spectrum disorder, but Dawson, while clearly more lacking in insight and empathy than my own two children, is just as clearly not impaired in her ability to communicate verbally. Dawson appears to be so vastly different than most people I know with autism, that she cannot and should not pretend to understand what it's like to be them, much less have the audacity to speak for them.

But let me address what is perhaps one of the most harmful subtexts of her essay: The fact that my children have an abnormality of development does not mean that I do not love my children for who they are, as she so continuously implies. I love my children, but I do not love autism. My children are not part of a select group of superior beings named "autistics." They have autism, a neurological impairment devastating in its implications for their lives, if left untreated. I do not know the cause of autism, but research tells me the most likely possibility is that there is some kind of genetic anomaly, perhaps influenced by environmental factors. In other words, it is no more normal to be autistic than it is to have spina bifida. As with any other condition that would threaten their future and their happiness, I do as much as I can to help them be as functional and as normal as possible. And no, "normal" to me does not mean "a cookie-cutter robot-child, trained to do my will." It means: "able, like most people without autism, to lead an independent, purpose-filled life." Able to speak, able to communicate, able to form and keep relationships. I have spent most of the last eight years poring over research on the treatment of autism. I have attended lectures and spent hours preparing materials for my children's ABA therapy programs. I do all of this because I love my children and because this treatment has helped them develop language, cognitive, self-help and social skills, all things that they would not have acquired without this treatment.

Since Dawson seems to find this point so hard to understand, let me spell it out: Both children developed normally, and then began losing skills in their second year of life. The sheer agony of watching one's children disappear before one's very eyes is something that no one should have to experience. My daughter was seriously self-injurious. My husband and I had to take shifts with her through the night for years because she rarely slept for more than two hours at a time. Both children screamed inconsolably for most of the day for no reason that we could understand. They were unable to communicate and miserably unhappy. Yes, unhappy – not basking in the serenity and joy of being autistic, but in fact, terrified and sad and isolated.

Thankfully, for Emily, we discovered medication that helped improve her behaviors, (something that undoubtedly Dawson would also find morally reprehensible) and we were fortunate to have access to a well-run behavioral therapy clinic with the appropriate intensity of treatment hours. Emily today is a happy child, now ten years old. She is not recovered; she was among the most severely affected with autism; but she can read, and speak in clear sentences. She can count, follow directions, dress herself, and she is included in a regular classroom for most of her day. She continues to make great strides in her ABA program. Incidentally, she loves her therapists and her program and we have never used aversives of any kind with her or my son.

Nicholas's progress was much quicker than Emily's was and today, at age 7, he is fully mainstreamed in a first grade classroom. He reads at the fifth grade level, is quite gifted and has many friends and hobbies. His IQ has risen almost fifty points, and he is very creative and smiles a lot. He is still quirky, and while it doesn't bother me personally, it does set him apart, and it will cause him further challenges and hurt as he grows older. If I could wave a magic wand I would take away his quirkiness, because it is something that keeps him from fully belonging in his group of friends.

Michelle Dawson and her supporters, I suspect, would most likely say that I have abused my children. In treating them with ABA therapy, I have imposed my value system on them, violated their right to be who they are. She appears to believe that my children need protection from me and from the team of therapists. I imagine, by this logic, one could say that when I took them to the doctor during those first years of their lives for their well-baby check-ups I was guilty then as well of violating their rights, and when I bought and administered the medicine for their various childhood illnesses, that was ethically unforgivable as well, since they were unable to consent to treatment. A few years ago, Emily refused to eat for weeks on end, apparently because food tastes and textures had become so aversive to her. After losing close to twenty pounds over a few weeks time, we had to hospitalize her and use a behavioral approach in an attempt to get her to eat again. It was tough going, but it worked. Emily left the hospital eating a variety of foods, and her eating issues are minimal today compared to the past. Were we guilty of abuse? Was our behavior unethical? Should we have done nothing and let her die? Because that's where she was headed without aggressive intervention. What would you have done, Ms. Dawson? Stand for a moment in the shoes of the parents and professionals whom you condemn. What are you doing to help our children? Why are you trying to undermine the legitimacy of the one treatment that has been shown to significantly improve their lives? My child was starving herself to death - what solution would you propose?

The truth is that Dawson has no solution, to this or any of the other challenges that beset our loved ones. How dare this woman claim to speak for my children, or pronounce judgment on our life? Parents and professionals make tough choices every day regarding all children and particularly those who have disorders that put them at risk for a reduced quality of life. I do not see how a child who sits in diapers for most of her life and bangs her head against the wall is having her rights violated by teaching her to use the toilet and communicate her needs. I would never sit in judgment of the parents of a child with Asperger's, should they encourage their child to speak and socialize in ways that do not isolate him or provoke teasing from his peers. Across the spectrum, Autism disables people. It leaves many of them without the skills they need to negotiate life, which is hard enough when a person is typically developing.

I find Dawson's assertions damaging and dangerous to children. Anyone who mounts a public campaign to deny medically necessary and clinically appropriate treatment to children with autism is harming those children. It is hard to believe that people would take this rant seriously, but I have been surprised and dismayed by what people can believe. Dawson, autistic or not, could benefit from some intensive education in empathy, ethics and the reality of autism. I hope parents will find the time and the occasion to speak out publicly against this kind of nonsense. It is hard enough to find and fund appropriate services for our children. If we are silent in the face of such attacks, we allow ideology to triumph over the welfare of our children.

Editors' Note: those wishing to review the Dawson piece for themselves may find it at www.sentex.net/~nexus23/naa_aba.html

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