The Schafer Autism Report
Letter to the NY Times from Kit Weintraub
Since I was quoted in the NY Times (ambushed, was more like it) I thought I would share my letter to the reporter who wrote the article, Amy Harmon, which will appear in the January Shafer report. I have complained to the NY Times about her bias, and I have written a letter to the editor which I understand will be published this week (though it's been edited down to
nothing.) For the record, I have no problem with people who are high-functioning adults advocating for acceptance of their autistic traits by society. I think discrimination against anyone who is different is wrong, but I do not feel that curing or attempting to treat a disorder is akin to genocide. Here's my feelings on the article:
I'd by lying if I said I was not extremely disappointed in your article published today. Choosing only the "Mickey Mouse vs. Frodo" example among all that I gave you sort of set me up to look like the neurotic control freak that this group already thinks I am. More importantly it does a disservice to New York Times readers who will obviously reach similar conclusions based on the lack of balance in the article. I am having a hard time believing that this was not your intent, since we spoke for over an hour, and I think I was pretty clear about my reasons for wanting to help my kids, and the full extent of their disabilities being quite different than the Asperger's people interviewed for your article. The point that was missed here was that Nick wouldn't even care about choosing anything to dress up in if we hadn't done ABA therapy with him. He would probably only be speaking in "scripts" from movies if at all, he would have absolutely no interest in any pretending to be Mickey Mouse or anyone else, because we literally had to teach him what pretend meant and how to pretend in ABA sessions. He is not like these people; he was much more severely afflicted than any of them, despite their claims to having a full range of autistic traits. Don't you question the fact that these people are highly verbal and intelligent, many of them successfully employed and in relationships, yet many of them claim not to be fully toilet-trained? Lack of self-help skills and self-injurious behaviors are usually associated with people who are lower functioning who are unable to express their wants and needs. These are the facts. I question strongly as to whether these people are being truthful.
My daughter Emily would be in diapers and not be speaking, period, without ABA therapy. I have been admonished in the past by members of the aut/advo listserve because I taught her to speak instead of crying for her wants, and to use the bathroom instead of a diaper. I was told by these people that her tantrums and self-injurious behaviors were likely due to my abusive
(ABA) attempts at teaching her to communicate, though I was clear that we never used aversives of any kind, and she enjoyed her therapy sessions and greeted her therapists with a smile when they came to the door. Of course they (and your article) ignored the fact that she was self-injurious and throwing a hundred tantrums a day prior to her receiving any therapy, and that she became much happier after she could communicate her needs/wants.
These people never had to be taught to speak; it's empathy that the lack, not the ability to express themselves; the ability to put themselves in the shoes of another is sadly what is missing. They can only empathize with people who they view as like them. They cruelly mock parents of newly diagnosed children who are devastated by the diagnosis, and those who try to help their children learn language, play, self-help and social skills. You know this, Amy, you have seen them writing this stuff, you are a member of that aut/advo list, and you know how nasty some of this group can be if a parent dares to disagree with their ideas. My guess is you have already seen the congratulations from the aut/advo list for writing such a great article for them. How exciting for them to have such a good friend in such an important place. However, your role as a NYTIMES reporter is not to use your position to influence the masses, but to objectively and fairly report the issues from all sides.
The other point that really upset me was the unchallenged statement that referred to ABA as "bordering on abusive", along with the statement that using ABA you could train a child to walk into a store that had bothersome crowds and lights, but the child would still be tortured by those things.
That is very misleading. Children who have difficulty with crowds and lights and other issues can be gradually and gently desensitized so that those things no longer bother them at all. No parent wants a child who acts appropriately but is suffering on the inside. Is it kinder to keep the child isolated at home for the rest of his life because he is bothered by crowds or lights?
The implication that behaviorists do not look at underlying causes is a common misconception. Remember, as I explained in detail to you previously, ABA stands for Applied Behavioral Analysis. The reasons (antecedents) for the behaviors that are troublesome for the child are identified in any good behavior plan. This nonsense about behaviorists and parents not caring about how the child feels or why he/she acts a certain way is just that. The picture is painted of parents who do not care if their child is happy as long as they act correctly does us a serious injustice. You did little to dispel that myth, or to present the other point of view that it is a greater disservice to "accept" your child's challenges of being nonverbal, self-injurious, incontinent and lacking in cognitive and social skills. A person on the severe end of autism all too often, without treatment, ends up living in a group home with a very dismal quality of life due to severe autistic behaviors and deficits in communication, social and self-help skills. Even if society became completely accepting of people who are afflicted with autism, the bigger picture is that the person's deficits and behaviors, completely aside from society's prejudices, get in the way of their safety and ability to live independently. For example, a large number of people with autism do not know that it is unsafe to run out into traffic, due to their lack of language and social skills and general fund of knowledge. They don't easily "pick up" concepts such as "danger" in childhood like other children do. ABA programs frequently target community safety issues. Should we not teach children with autism safety skills?
Should we make all people drive at 10 mph to be more sensitive to autistic
people who do not understand safety issues? I have more than one friend
who's autistic child ran in front of a car and was hit, not because the child did not see the car but they child did not understand that running out in front of a car can kill you. And speaking of lack of understanding of ab stract concepts, the quote from the person who said they were going to purposely "act more autistic in public" could not come from most people I know who are afflicted with autism. To be able to understand the ramifications of their behaviors and to decide to increase those behaviors to "rock the boat" and make a point is a highly socially sophisticated maneuver that most people with true autism could not comprehend.
Nothing was mentioned in your article about the regression that my children experienced in their second year of life, or the unhappiness they exhibited before they were old enough to even interact socially, or the severely abnormal EEG on Emily, the neurological signs, the loss of speech, their apparently normal infancy which gradually slipped away. Autism is a disorder, it is not a lifestyle or a just a different way of being. I admit that many people with autism will always have some autistic traits, despite treatment, and they should never be shunned or discriminated against because of their autism. I also agree that there are many traits associated with autism that are positive, such as excellent visual memory in some, but let us not think that these traits would disappear if a child was taught to be more socially able. No one I know who does ABA with their children targets for extinction the more positive abilities in children with autism. We are concerned with helping children gain skills and reduce negative behaviors that set them apart from others. My own two children will probably never be without autism, and I accept that, but it is not wrong to try to help them be more like other children.
The article was very heavily weighted towards the autistic advocacy point of view, and it would definitely sway me if I knew no better. I am tired of these people calling themselves autistic as if they share the same disorder as my children. I am tired of their proclaiming themselves supposed advocates for my kids. Fine if they want to do whatever it is that they want to do. I don't care. No one is forcing change on them, but they should not speak as if my children are like them and need to be saved from their parents.
Amy, the New York Times has a responsibility to be fair and balanced. This article was not. I hope you consider doing a follow-up article covering the point of view of parents who have children who are truly affected with autism. These people at most have Asperger's syndrome, and I suspect that some of them just have neurotic personality disorders without any autism, but of course, autism is the diagnosis of the day, so many of them revel in their newfound identity. In any case, I don't give a hoot if they want to flap, as long as they don't condemn or limit my ability to help my children or others like them. And make no mistake, that is their goal. Michelle Dawson was absolutely instrumental in the Canadian Lawsuit being lost that would have made the Canadian Government pay for ABA for older children. High functioning autistic adults can choose to be different and live with the consequences, but most young or more severe people with autism do not understand that their behaviors might alienate potential friends.
I can only say that you need to ask yourself if being a champion to this group is creating a conflict in your responsibility as a reporter to present both sides equally. I see nothing wrong with advocating for acceptance of people who are disabled, promoting acceptance and understanding. And no one is more an advocate for acceptance of people with autism than parents of children with autism, whether they do ABA with their kids or not. Accepting what we cannot change does not mean not trying to change what we can. I do resent the implications from this group that we hate people with autism, that our goal of helping our children act more like other children is akin to genocide. Children with autism can be taught skills that will help them manage in society.
In conclusion, let me also remind you of the question I asked you when we spoke on the phone related to how you felt about autism and deafness being viewed as an alternate lifestyle vs. a disorder. Recall that I asked you if your child was born deaf, if he or she could benefit from a cochlear implant, would you seek that out for your child? Without hesitating a moment you admitted you would go for the implant for your child. You would not want your child to be different. We parents of children with autism feel that way too. As long as there is hope for treatment or cure, we would rather have our child be like other children than to have to have society become more accommodating. You agreed. By repeatedly printing articles that influence your readers to see autism as merely a different way of being, you are helping influence a generation of parents, teachers and other leaders in the autism community to deny children with autism treatment. This is very serious stuff with serious consequences. If your child had severe autism and your school district announced that ABA was no longer available because it was considered unethical to teach children to be more like their peers, and instead only acceptance and acommodations would be utilized, you would not be very happy, any happier than you would be if you had a deaf child and cochlear implants were no longer available because deafness was no longer considered a disorder.
Again, please consider writing an article from the point of view of parents who have been harassed for trying to help their children live more normal lives. I hope you have the courage to disappoint the group that considers you their biggest advocate. If you are doing the right thing and reporting viewpoints accurately, then people should feel that you adequately represented them, not that you are a champion of their cause.
mother to Emily and Nicholas Weintraub