Response from Dr. Joseph Buxbaum
Dr. Joseph Buxbaum, who I cited in this blog (see my post "Autism and Paradox") does genetic research funded by NAAR. He kindly wrote a response to me personally, and I would like to give this opportunity for him to be heard:
The first thing to remember is that unlike some other disorders, there is evidence that behavioral interventions work in autism, at least in some cases. In addition, although it has certainly not been proven, the general thought is that early and more intensive intervention will be more effective than later and less intensive intervention. So, in complete contrast to what you suggest, I am of the thought that prenatal, perinatal and postnatal testing will allow for appropriate behavioral interventions for children at risk.
Note that the question of testing and of recurrence risk is the question that I most often receive from parents. I think this reflects the deep concern of parents with one seriously affected child that desire to have another child. I think we can be sure that none of the parents who ask me about these issues are the parents of a Bill Gates or an Albert Einstein.
With best regards,
Joseph Buxbaum
First, I would like to thank Dr. Buxbaum for his reply. As I've said in this and to NAAR directly, I believe it is important for open debate and dialogue. I still believe that the ethical question lingers with this research, even with Dr. Buxbaum's intent of earlier intervention. With the choice of whether or not to have another child with autism, there exists the likelihood that many a parent will choose not to. It is not that I don't believe in the right to choose. I do, however, believe in the GREAT need for autism awareness. Positive awareness. This is not about Bill Gates or Albert Einstein. This is about a human being -- many people with autism who appear "severe" have articulated in writing that they just don't understand why the world has so much trouble accepting them for their difference. I admit that before I had Adam, I may have chosen not to if I had been given the opportunity prenatally. However, after the fact, after I have learned so much because of Adam, I believe there is a greater need for putting the voices and people with disabilities at the forefront of this dialogue. Had I understood and been given the opportunity to KNOW people with disabilities when I was young, perhaps if they were integrated with me during my school years, I would not have grown up with preconceived prejudices about these members of our society. Too often, we hear the voices of parents and researchers. These are often bias voices. We need to hear from those with Autism and organizations like NAAR need to make way on their "stages."
This, Dr. Buxbaum, is where I think you've got it wrong. I believe these are complex issues that require years more of deliberation. Without having an opportunity to raise positive awareness about the "normal Joe" with autism, and making way for their point of view, the entire research goal is sorely incomplete, perhaps even misguided. In fact, I've asked NAAR why you as scientists are not asking those with autism what research they would like to see. Why are you deciding and why are the parents? This is my raison d'etre for raising awareness -- your semantics and that of NAAR's have political affect -- using words that express despair and a loss of hope(cures are for terminal illnesses, not for autism) are indeed closing many a school door for us RIGHT NOW. By suggesting that parents have "deep concerns" and arguing from this angle is not helping my child who is living, breathing and has a right to the same opportunities, education, and indeed additional supports as needed within these environments. I am not saying that the job of the parent with a child with autism is easy. I am such a parent. Yet I deliberate every day at why obtaining a school placement with concurrent supports and intellectual rigour for my son is so difficult. Why is it that he cannot be integrated with his peers -- something from which he benefits? Why do schools that claim to service the "Learning Different" hum and ha when I mention the word AUTISM? Why is it that when schools claim that they are integrated, leave the child with autism largely alone? Why are IEP's so difficult to obtain and implement? Research and fundraising vernacular, in my view, is serving to marginalize my son, not advance his opportunities or understanding, and acceptance in the world. This is where you and organizations like NAAR can really help!! Help build understanding about autism that leads to tolerance. It is fine to state that the means to an end is "early intervention" and no one will argue with you. But I think you have to consider the people who are living with autism, how arguments are presented, who is truly guiding the research, and how your semantics effect societal attitudes toward disability as a whole.
Once again, I appreciate your response.
The first thing to remember is that unlike some other disorders, there is evidence that behavioral interventions work in autism, at least in some cases. In addition, although it has certainly not been proven, the general thought is that early and more intensive intervention will be more effective than later and less intensive intervention. So, in complete contrast to what you suggest, I am of the thought that prenatal, perinatal and postnatal testing will allow for appropriate behavioral interventions for children at risk.
Note that the question of testing and of recurrence risk is the question that I most often receive from parents. I think this reflects the deep concern of parents with one seriously affected child that desire to have another child. I think we can be sure that none of the parents who ask me about these issues are the parents of a Bill Gates or an Albert Einstein.
With best regards,
Joseph Buxbaum
First, I would like to thank Dr. Buxbaum for his reply. As I've said in this and to NAAR directly, I believe it is important for open debate and dialogue. I still believe that the ethical question lingers with this research, even with Dr. Buxbaum's intent of earlier intervention. With the choice of whether or not to have another child with autism, there exists the likelihood that many a parent will choose not to. It is not that I don't believe in the right to choose. I do, however, believe in the GREAT need for autism awareness. Positive awareness. This is not about Bill Gates or Albert Einstein. This is about a human being -- many people with autism who appear "severe" have articulated in writing that they just don't understand why the world has so much trouble accepting them for their difference. I admit that before I had Adam, I may have chosen not to if I had been given the opportunity prenatally. However, after the fact, after I have learned so much because of Adam, I believe there is a greater need for putting the voices and people with disabilities at the forefront of this dialogue. Had I understood and been given the opportunity to KNOW people with disabilities when I was young, perhaps if they were integrated with me during my school years, I would not have grown up with preconceived prejudices about these members of our society. Too often, we hear the voices of parents and researchers. These are often bias voices. We need to hear from those with Autism and organizations like NAAR need to make way on their "stages."
This, Dr. Buxbaum, is where I think you've got it wrong. I believe these are complex issues that require years more of deliberation. Without having an opportunity to raise positive awareness about the "normal Joe" with autism, and making way for their point of view, the entire research goal is sorely incomplete, perhaps even misguided. In fact, I've asked NAAR why you as scientists are not asking those with autism what research they would like to see. Why are you deciding and why are the parents? This is my raison d'etre for raising awareness -- your semantics and that of NAAR's have political affect -- using words that express despair and a loss of hope(cures are for terminal illnesses, not for autism) are indeed closing many a school door for us RIGHT NOW. By suggesting that parents have "deep concerns" and arguing from this angle is not helping my child who is living, breathing and has a right to the same opportunities, education, and indeed additional supports as needed within these environments. I am not saying that the job of the parent with a child with autism is easy. I am such a parent. Yet I deliberate every day at why obtaining a school placement with concurrent supports and intellectual rigour for my son is so difficult. Why is it that he cannot be integrated with his peers -- something from which he benefits? Why do schools that claim to service the "Learning Different" hum and ha when I mention the word AUTISM? Why is it that when schools claim that they are integrated, leave the child with autism largely alone? Why are IEP's so difficult to obtain and implement? Research and fundraising vernacular, in my view, is serving to marginalize my son, not advance his opportunities or understanding, and acceptance in the world. This is where you and organizations like NAAR can really help!! Help build understanding about autism that leads to tolerance. It is fine to state that the means to an end is "early intervention" and no one will argue with you. But I think you have to consider the people who are living with autism, how arguments are presented, who is truly guiding the research, and how your semantics effect societal attitudes toward disability as a whole.
Once again, I appreciate your response.
7 Comments:
Sorry for the bad links (I'm having trouble creating some of them within the text). Go to Dr. Joseph Buxbaum on Google Search. If you want to find my post on Autism and Paradox, go to Google and write "Autism and Paradox joyofautism."
Thanks again,
Estee
Thank you so much for posting this, Estee. I agree with you that open debate and dialogue are necessary to understand opinions that differ from one's own and to respond in an intelligent and informed manner.
I am also troubled by Dr. Buxbaum's words, particularly his assertion, "I think we can be sure that none of the parents who ask me about these issues are the parents of a Bill Gates or an Albert Einstein."
I beg to differ. We cannot "be sure" what the future of any young child may hold. Although it is indeed true that most autistic children will not grow up to be geniuses, just as most of their non-autistic peers will not, we cannot say with any degree of certainty what they may grow up to do.
We can, however, be sure that these children--millions of them--are human beings with the capacity to laugh, to love, to learn, to hope, and to dream of the future. Although they may not do these things in the same way as other children, their differences should not cause them to be written off as lacking all potential for a worthwhile life.
Historical note: Einstein did not speak until he was five years old, and he had violent tantrums for many years. In all likelihood, if young Albert were unfortunate enough to be growing up today, he would be described as "seriously affected" and his parents would be asking doctors about recurrence and prenatal testing.
Dr. Buxbaum said "Note that the question of testing and of recurrence risk is the question that I most often receive from parents. I think this reflects the deep concern of parents with one seriously affected child that desire to have another child. I think we can be sure that none of the parents who ask me about these issues are the parents of a Bill Gates or an Albert Einstein."
How can you be sure Dr. Buxbaum? A child may not show their true potential until their twenties. In the meantime, parents are panicked about how their children will develop into adulthood and more often than not will be tempted to abort if a prenatal test shows the possibility of autism.
Do you know that some women ALREADY choose to abort boys if they have a child already on the spectrum, as they feel there is a greater likelihood of a male child being affected.
There will be no more Einsteins, and Bill Gates in the future of prenatal testing for autism.
Amy Nelson of Aspies for freedom.
It is often the case that parents cannot but help to seek the opinions of others (in books and other fora by diverse authors) when faced with the many questions posed when a child is first diagnosed. Without starting his ABA therapy at just over two years old, Charlie would not have been able to talk and much, much more. I particularly fear that he may have become violent and aggressive.
From Autism's working past, Rich Shull, writes.
For political reasons our Anthropology has been hidden from view but yet we draw from the entire autism spectrum and are teens to 80 somethings. We are typicaly picture thinkers. Most of us do some version of traditional life. Not every modern diagnosed Aspie of today "knows us" meaning they don't think in pictures. Lots however do know us and respond well to us ,even if they read at low levels and have been threw the ringer with modern autism. Thankfully no one was there to tell our teachers and parents we were autisitc and they had no reason not to jump threw hoops to make us suceed and they did (unknowingly), Sorry to ramble but not everyone knows of our Temple Grandin's.
As for the topic at hand I am frankly shocked any doctor talked with a parent. I give him points for that. For whatever the reason many of us despite the autism came out rather well. I can see that a parent of today would cringe with the thought of a second Autisitc child and I could see the point in thinking twice. Sadly Modern Autism has been more work than help. (my view)
I predict that someday when our anthropology is identified and figured out Autism will simply be a 6 year preschool where after that, most of our students could be mainstreamed. Autism is not all that hard just it is a "latin" that has never been figured out in mainstream autism or psychology yet. We have alredy done the longhand version of this autism and if we compare our notes and milestones we could take 30 years off the autism learning curve. Sadly to do that we must upset a few "experts".
I bet many more of us could do well for ourselves and become experts in something if our splinter skills were allowed to develop and return Autism to a 'former 'glory' . Please look on the Web for Alan Turing 1912-1954 he was father of the computer and also an example of autism before the era of diagnosis. Many in our anthropology copy his life to a tee. Rich Shull
I am pro choice but picking and choosing 'desirable/normal' traits in an unborn child seems very shallow and superficial to me. The sad fact is that with the negative way autism is portrayed, most parents when given the option to abort an autistic child will not know any better and will do it because that's what the media and the medical profession has told them to believe; that autism is a bad thing when in fact it is not. It has it's benefits and those should not be dismissed. I have a lot of advantages over other parents with 'normal' children. Why not celebrate and make those known for a change? My goal is to let the parents that might be faced with this decision know that autism can be a beautiful thing too.
It's not that every autistic will make a huge contribution to our world - it's more about giving them the chance to!
-Rachel
NT Mom
I am a person with Asperger Syndrome, and before learning of the Autism Genome Project I was very pro-choice. Now, however, I have some very serious doubts about my former position. I certainly see (selective)abortion as a potential tool of genocide and I am determined to put a STOP to this.
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