Sunday, July 08, 2007

Shades of Autism Denial

Much has been made in recent weeks of the denial by John Travolta of his son's alleged autism. I do not know if his son is actually autistic although a lot of people certainly seem to think that he is. Some of the language directed at Travolta by inter-net bloggers has been pretty rough. The general gist of the accusations is that Travolta is prevented by his Scientology beliefs from acknowledging that his son is Autistic. Dr. Deborah Serani authors a blog called Dr. Deb and provides a fairly gentle treatment of the issue when she says:

I feel sad about this because there are some treatments for Autism that would not involve medication - something Scientology disdains. For example, Applied Behavior Analysis would be helpful. But the religion denies the existence of any mental/neurological disorders, so it seems that nothing will be done for this boy.

Dr. Serani raises an interesting point about denial and the failure to utilize Applied behavior Analysis (ABA) a helpful intervention, which is to date the only treatment which meets the evidence based standards for effectiveness in treating autism. But there are different types and shades of autism denial. There is, unfortunately, a school of thought amongst some parents of autistic children, albeit a very small group, which says that autism is not a disorder, it is simply a natural variation, a different way of being neither better nor worse than any other variation of the human condition.

According to this point of view parents who seek to cure or treat their children are failing to accept their children for who they are; we are failing to embrace our children's autism and therefore we are not accepting our own children since their autism is the essence of who they are. One of the better known advocates of this "acceptance of autism" is Ms. Estee Klar-Wolfond who publishes a blog site called "The Joy of Autism". It is difficult to be more aptly descriptive of Ms. Klar-Wolfond's brand of denial than the title she has chosen for her blog site. Ms. Klar-Wolfond celebrates her son's autism, chastises parents who speak truthfully about their children's autism by describing it as what it is - a disorder, or describe truthfully the very serious and harmful deficits that can accompany autism. The Joyful perspective Ms. Klar-Wolfond professes to embrace does not prevent her from persistently attacking parents seeking to treat their children with Applied Behavior Analysis.

There are different shades of denial. Mr. Travolta is reported to deny that his son is autistic. Ms. Klar-Wolfond accepts that her son is autistic but denies that his autism is a serious neurological disorder that should be cured or treated. In both cases their children will be denied the benefits that could be realized with ABA intervention.

Sad, in both cases.


Anonymous said...

Autism is the essence of who “they” are?

No, the human condition is. The division is an illusion. Humans have more in common than they have differences. Being on the autism spectrum is a **subset condition** of the human condition.

Austim is not the whole of the autistic's existence, as profound as differences may seem, and they can be profound.

Either see autism through the damage lens or one is in denial? That is a false dilemma (logic error).

You’re right, autism does present challenges, such as what we're living with in my 3-generation household. I’m on the range, my oldest son is on the range, and so is my grandson, who does not speak(he's almost five).

That is why I prefer to look at autism as a difference in wiring while dealing with it on a daily basis, and deal with it we do! There is not an hour that passes that I'm not aware of how autism has affected our family.

Estee Klar-Wolfond said...

Denial is not acknowledging what autistics have to say about autism. Your blog truly exemplifies exclusion and denial that terrifies me for the future of every autistic and disabled person.

ABA is not the only way to "cure" autism, and that is fact. Spend some time and listen to autistic people and do your research, Harold.

If ABA is your choice for your family, do it. I do not support legislated ABA for autistic people as that would be the so-called "death sentence" for Adam. I support many different kinds of supports in the way of accomodations for autistic individuals as they've indicated the need. It's time you stopped frightening people to death.

By the way, those you send to my blog email me. I thank you. They read and they come to know another way of viewing things. TAAProject's membership keeps on growing.

Unknown said...

You are quite welcome for the referral Ms Klar-Wolfond.

As for what autistics have to say about autism I am afraid you are mistaken. I don't agree with the Neurodiveristy ideologues. They do not represent all high functioning autistic persons. There are many high functioning autistic persons however who do support parental efforts to help our children.

Your Neurodiversity friends, with their excellent communication skills have little in common with lower functioning severely autistic persons such as my son.

While I consider different perspectives, I always remember that it is my responsibility to do what I think is best for my son, not a Neurodiversity internet blogger half a world away. I would never abandon my judgment of my son's best interests to others, particularly those who do not share his condition.

As for ABA it is not the only intervention for autism. It is the only one that meets the evidence based standard for effectiveness. It is why parents around the world are fighting so hard to obtain ABA intervention for their children.

By all means fight for the advancement of your project. Personally, I prefer to help my son and to advocate for effective interventions and services for autistic children.

But I understand the serious challenges my son faces, I am not in denial about those challenges, or what has to be done to help him deal with them. I prefer to face autism realistically.