HOPE
Oh my, Wired magazine has entered the fray with Amy Wallace’s unabashed love letter to Paul Offit. Whenever I see Doc O’s name pop up, I have an almost Pavolovian need to respond. In this case, though, nothing new was said. Besides, J.B Handley has already done a fine job, over at Age of Autism, of discussing this puff piece.
Although I see no need to directly address Ms. Wallace’s screed, I’d like to discuss the recurring theme we keep seeing from those who deny the very possibility that we are in the midst of an epidemic, and the related possibility that a program intended to protect our children might have played a major causative role in the creation of the epidemic.
Ms. Wallace writes that, “[w]hen a child is ill, parents will do anything to make it right.” She makes that sound like a bad thing: that parents would want to go to whatever lengths are necessary to heal a sick or injured child. Ms. Wallace apparently attended the Autism One Conference last May, but it’s difficult to know if she actually listened to much that was said. It’s not just that she seems to think ⎯ quite incorrectly ⎯ that the whole conference was about blaming vaccines, but she belittles the various advances in biomedical treatments that were discussed there.
Again saying it as if it was something bad, Ms. Wallace recounts her Autism One experience: “To a one, the speakers told parents not to despair.” Are we supposed to go through life without hope that our children can get better? Apparently that would be preferable to living with the hope that we are getting. Ms. Wallace makes sure that her new best friend’s views are stated: “Offit calls this stuff, much of which is unproven, ineffectual, or downright dangerous, “a cottage industry of false hope.”
I can only speak for my family, but we have chosen to live a life of hope, and that hope ⎯ and a lot of hard work ⎯ has brought rewards. I generally avoid writing a lot about our son on this blog. It’s mostly a matter of his privacy, and my belief that some day he will make his own choice as to what he wants to say. But I need to bend that self-imposed rule a little to talk about hope, and how sometimes hope and reality are not that far apart.
About five years ago, a self-styled “developmental pediatrician” told us that the Little Rankster was definitely autistic, and we needed to do three things: 1) get him on Ritalin; 2) put him in a special school; and 3) start looking into a residential placement he would probably need in a few years. He explained that the best we could expect from pharmaceuticals and special schools was a delay in the inevitable.
None of those recommendations were followed. We chose, instead, to use “unproven” biomedical treatments, which we mixed in with speech therapy and a little bit (but only a little bit) of traditional behavioral therapies. We made those choices, even when a multi-disciplinary team, at the end of a very expensive evaluation, gave us advice that was similar to the pediatrician’s, albeit a little less gloomy. It didn’t seem to bother any of these professionals that the one thing they all advised us to try, Ritalin, was “unproven” as to either efficacy or safety for children of our son’s age.
We chose hope for our son. It has not been easy. There are no magic bullets. Because the medical community serving our kids is still learning about how underlying conditions result in the clinical manifestations of autism, there have been a lot of changes in what we’ve done. Not everything we’ve tried has worked, but there have been a lot of successes. The process has required constant research and re-examination, mostly by my wife. Before trying anything, we look at what testing and clinical signs are pointing to, and whether there is a rational basis for what we intend to try. Most important, we weigh the potential risk against the potential benefits, and err on the side of safety.
Skeptics will say that “all children make progress,” and we can’t prove that any progress our son has made can be tied to the interventions we have used. Frankly, I don’t care about proving anything. The timing and the nature of the improvements we have seen tell us when we are seeing results.
Through the years, we have seen those results. Our son remained in public school in “regular” classrooms, first in Louisiana and then here in the midwest after we moved up here a few years ago. At first, he needed a lot of help ⎯ the kind that the schools are required to provide. But as his physical condition improved through the biomedical interventions we used, so did his school performance improve. He’s still under an IEP, but he hasn’t needed an aide for the last year-and-a-half.
The Little Rankster has steadily showed more interest in the world around him. This year, he’s in the school chorus. Let me restate that a different way. The boy who could not speak until a couple of years ago, is now singing, loudly, clearly, and happily. And then last week, something happened that we would not have believed possible not so long ago. Our son’s classmates elected him to the school’s Student Council. He showed an interest in running (a miracle in itself); his teacher felt he was worthy of nomination, he gave a short speech, and the other students voted for him.
The Church speaks of “outward and visible signs of an inward and spiritual grace.” I don’t intend to compare what we do to religion or faith; it is science. But what the Rankin family and our friends see on a constant basis can be called outward and visible signs of an inward healing. We aren’t ready to declare victory and proclaim that our son is completely “recovered” . . . not yet. But we’re getting closer to that every day. And throughout our family’s journey, the outward and visible signs have fueled hope.
Our hope is real. And hope is a good thing.
Although I see no need to directly address Ms. Wallace’s screed, I’d like to discuss the recurring theme we keep seeing from those who deny the very possibility that we are in the midst of an epidemic, and the related possibility that a program intended to protect our children might have played a major causative role in the creation of the epidemic.
Ms. Wallace writes that, “[w]hen a child is ill, parents will do anything to make it right.” She makes that sound like a bad thing: that parents would want to go to whatever lengths are necessary to heal a sick or injured child. Ms. Wallace apparently attended the Autism One Conference last May, but it’s difficult to know if she actually listened to much that was said. It’s not just that she seems to think ⎯ quite incorrectly ⎯ that the whole conference was about blaming vaccines, but she belittles the various advances in biomedical treatments that were discussed there.
Again saying it as if it was something bad, Ms. Wallace recounts her Autism One experience: “To a one, the speakers told parents not to despair.” Are we supposed to go through life without hope that our children can get better? Apparently that would be preferable to living with the hope that we are getting. Ms. Wallace makes sure that her new best friend’s views are stated: “Offit calls this stuff, much of which is unproven, ineffectual, or downright dangerous, “a cottage industry of false hope.”
I can only speak for my family, but we have chosen to live a life of hope, and that hope ⎯ and a lot of hard work ⎯ has brought rewards. I generally avoid writing a lot about our son on this blog. It’s mostly a matter of his privacy, and my belief that some day he will make his own choice as to what he wants to say. But I need to bend that self-imposed rule a little to talk about hope, and how sometimes hope and reality are not that far apart.
About five years ago, a self-styled “developmental pediatrician” told us that the Little Rankster was definitely autistic, and we needed to do three things: 1) get him on Ritalin; 2) put him in a special school; and 3) start looking into a residential placement he would probably need in a few years. He explained that the best we could expect from pharmaceuticals and special schools was a delay in the inevitable.
None of those recommendations were followed. We chose, instead, to use “unproven” biomedical treatments, which we mixed in with speech therapy and a little bit (but only a little bit) of traditional behavioral therapies. We made those choices, even when a multi-disciplinary team, at the end of a very expensive evaluation, gave us advice that was similar to the pediatrician’s, albeit a little less gloomy. It didn’t seem to bother any of these professionals that the one thing they all advised us to try, Ritalin, was “unproven” as to either efficacy or safety for children of our son’s age.
We chose hope for our son. It has not been easy. There are no magic bullets. Because the medical community serving our kids is still learning about how underlying conditions result in the clinical manifestations of autism, there have been a lot of changes in what we’ve done. Not everything we’ve tried has worked, but there have been a lot of successes. The process has required constant research and re-examination, mostly by my wife. Before trying anything, we look at what testing and clinical signs are pointing to, and whether there is a rational basis for what we intend to try. Most important, we weigh the potential risk against the potential benefits, and err on the side of safety.
Skeptics will say that “all children make progress,” and we can’t prove that any progress our son has made can be tied to the interventions we have used. Frankly, I don’t care about proving anything. The timing and the nature of the improvements we have seen tell us when we are seeing results.
Through the years, we have seen those results. Our son remained in public school in “regular” classrooms, first in Louisiana and then here in the midwest after we moved up here a few years ago. At first, he needed a lot of help ⎯ the kind that the schools are required to provide. But as his physical condition improved through the biomedical interventions we used, so did his school performance improve. He’s still under an IEP, but he hasn’t needed an aide for the last year-and-a-half.
The Little Rankster has steadily showed more interest in the world around him. This year, he’s in the school chorus. Let me restate that a different way. The boy who could not speak until a couple of years ago, is now singing, loudly, clearly, and happily. And then last week, something happened that we would not have believed possible not so long ago. Our son’s classmates elected him to the school’s Student Council. He showed an interest in running (a miracle in itself); his teacher felt he was worthy of nomination, he gave a short speech, and the other students voted for him.
The Church speaks of “outward and visible signs of an inward and spiritual grace.” I don’t intend to compare what we do to religion or faith; it is science. But what the Rankin family and our friends see on a constant basis can be called outward and visible signs of an inward healing. We aren’t ready to declare victory and proclaim that our son is completely “recovered” . . . not yet. But we’re getting closer to that every day. And throughout our family’s journey, the outward and visible signs have fueled hope.
Our hope is real. And hope is a good thing.
posted by Wade Rankin at 10/21/2009 02:22:00 PM
4 Comments:
I have a twenty-two year old son who was diagnosed as autistic in the classic sense. He had all the symptoms, aphasia, ritualistic tendencies, sound sensitivity, head banging, isolation.
What I learned is that ABA and other behavioral therapy can only take the autistic child as far as the child's disability will allow him to go. Many of the walls that autism creates can only be breached when there is a medical change.
I remember the years dragging him through his homework because he could not look at the paper long enough to read the homework questions. I remember the change that took place over the space of two weeks to where he was doing his homework by himself. That was a medical change.
Paul Offit's thesis is a copout. He is very comfortable telling the world that this and that can't possibly work, but he doesn't care to look for what does work.
There are real medical differences between the autistic population and the rest of the population. That was first demonstrated when Dr Rosemary Waring did her tylenol experiments and found that autistic children are statistical outliers in the length of time it takes them to process tylenol through their systems. People like Paul Offit never mention such things because anything that might bring about a medical change in autistic children is of no interest to them. For them, there is nothing medically wrong with autistic children and modern medicine need not get involved.
What I have seen in the autism community is that what works a miracle for one autistic child has no use for another. Does that mean that we should give up? Not a chance.
My son drives and is going to college studying electrical engineering. He is still autistic, but he is fully functional. I have to echo what you say. Hope is real and hope is a good thing.
BTW,
I got far enough into Offit's Autism's False Prophets book to see him quote an Eli Lilly study (1929) that said an adult male could take up to 2,000,000 micrograms of thimerosal. It is on page 63. After that, I could not read any more.
I have always found it interesting that with the "proof" being entirely statistical no medical journal has ever published the autism rate among the unvaccinated population. All of the proofs that there is no connection between autism and vaccination neglected to include a measure of the control group, the population that has never been vaccinated. I am in awe. The need for no connection is so powerful that the scientists convinced themselves without looking at the control group statistics.
Thanks for the comments, Ed. You bring up a great point: that what works for one may not for another. Even in the biomedical world, we cannot rely on a one-size-fits-all approach.
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