By Patti Carroll
I recently had the unpleasant experience of sitting through not one, but two forums that featured Roy Richard Grinker as featured speaker.
I attended these forums by invitation from the University of Minnesota LEND (Leadership Education in Neurodevelopmental and Related Disabilities) group. The LEND program is not new, but the U of M chapter is, and this was the first public forum presented by the group. I knew the organizers were thrilled to have Grinker, and I’m sure to most academic types, he seems impressive. I, of course, was doubtful, knowing Grinker had blatantly published inaccurate information in his book.
The first 90-minute session was for professionals and academics, and carried the subtitle: “The Effect of Culture on the Recognition and Prevalence of Autism Spectrum Disorders”
The flyer indicated that: “Professor Grinker, researcher, writer, and parent, will describe the current state of research on autism prevalence and diagnosis from a global, cross-cultural perspective. In addition to describing the role of epidemiology in autism research, he will present data from his epidemiological project in South Korea, and discuss research on early diagnosis among Zulu toddlers in South Africa and Mexican migrant farmers in Florida.
Although the description of this lecture would lead one to believe that there would be much discussion about autism prevalence in other cultures, Grinker wasted no time in revealing his true agenda, which was to disprove that autism has actually increased at all over time. He claimed that prevalence actually means proportion, while incidence represents the rate of new cases over time. He then stated that the currently reported incidence of autism is incorrect. Now, had this man backed up that declaration with any good data whatsoever, it would have been a pretty powerful statement. But what followed was a ridiculous collection of anecdotal statements, cheesy graphs and power point slides, and sly digs at virtually any source showing that autism is increasing. He incessantly used the phrase “WE know…” and frequently referred to his own commentary and rebuttals to bolster his arguments. He said repeatedly that he was not aware of any data (or studies, or literature) that presented different facts, which was actually quite laughable, because the whole basis of his argument was that people who are looking for something (namely autism) will find it everywhere! I guess it goes both ways. When you purposely DON’T look for something, you can claim you “aren’t aware” of it.
One of the more absurd observations he made was to present a slide of the U.S., showing the rate of autism in each state, then showing a slide of the U.S. that showed the number of autism services in each state. He used the examples of Alabama (with the lowest rate of autism and the lowest number of services) and New Jersey (with the highest rate of autism and the most autism services available). In what was intended to be a dramatic “Aha!” moment, Grinker purported that the reason there are more kids diagnosed with autism in New Jersey is because there are more services there.
Yeah right – if we build it, they will come. No data was presented whatsoever as to what came first – the need for services or the services themselves, and of course, he conveniently neglected to mention the fact that New Jersey is the most vaccinated state in the nation, to go along with their distinction of having the highest rate of autism in the nation. Another sad attempt to prove his point was when he used the hidden “FedEX” arrow slide to show that even though you don’t necessarily see something right away, it doesn’t mean it isn’t there. I guess this was meant to show people that autism has always been around us, we just didn’t notice it before.
Grinker spent only 15 minutes out of the first 90-minute presentation talking about his research in other cultures. This included showing a clip from a 2005 Korean film that featured a person with autism, which he claims brought great awareness of autism to Korea. He made a really weird statement about Korean moms being “happy” when they have a child with autism, and revealed that his conclusions about prevalence in Korea were based largely on focus groups run by Grinker himself. This was one of the times he said “I don’t know of another study…”, and then claimed the work was “…what we consider to be the most rigorous…” Uh, yeah – I guess you could consider your work the most rigorous, when it has never been done before! I found it peculiar that Grinker (who is an anthropologist, not a psychologist) mentioned during the second forum that in his research in South Korea, 75% of the kids they diagnosed in their study had had no autism services in the past. What is an anthropologist doing making autism diagnoses during an epidemiological project?
There were far fewer people at the second presentation, which was geared toward the “Community”, and held at the MN Department of Health. This talk was very similar to the first talk, but I noticed that Grinker was even more outwardly contemptuous of anyone who disagreed with him. I didn’t think he could be more arrogant and self-important than the morning session, but I was wrong. Maybe he felt more secure in the Department of Health setting to spew his propaganda. Some of the lowlights included dissing parents who use chelation and supplements, bringing up the Chicago Tribune article on OSR, mentioning the NYT article about the pertussis epidemic - blaming it (of course) on unvaccinated populations, and saying that even though the increase in autism “feels like an epidemic, science shows it’s otherwise”. During the Q&A afterward, I called him out on this statement. I asked what “science” he was talking about. First, he actually tried to claim he didn’t say it, but I referred to my notes and repeated what he had said. Then he backed down, and said “What I should have said is that there is no scientific evidence for the increase in autism”. I responded, “Is there any evidence that it’s NOT increasing, though?” Here he went back to claiming how hard it is to prove that there is or isn’t an increase in incidence, prevalence studies are so hard… blah, blah, blah. From there he jumped right to saying that “Today the state of California declared an epidemic of pertussis – due to high rates of unvaccinated people”. So I guess in Grinker’s world a few hundred people getting a highly contagious disease unquestionably constitutes an epidemic, but 1% of the population having autism (and Grinker thinks the incidence of autism is actually closer to 2%) isn’t anything to be concerned about. Wow. I interjected at this point that we had had a similar pertussis situation recently in Minnesota, and he interrupted, asking if there had been an epidemic declared. I responded that they called it an “outbreak”, and had just managed to say that it had been among VACCINATED kids before he cut me off again.
There were several other good questions from the small audience, and one woman brought up the Hertz-Picatto (sp?) prevalence study. Grinker’s response to this was to again refer to his own rebuttal letter regarding this study, and then revert to blathering about the variables, quantifying awareness, the poor quality of the dataset, blah, blah, blah. Someone asked about doing a study of vaccinated vs. unvaccinated populations, and Grinker’s response was that it would be too difficult to do, and would be “unethical” anyway. This was a pattern throughout both presentations – claiming that incidence studies are incredibly difficult, and most often incorrect – but expecting the audience to accept his opinion as the gospel truth.
It’s no surprise that Grinker wholeheartedly supports the addition of Asperger’s to the DSM-V. He spoke at length of his daughter, and how wonderful it has been for her to achieve the level of acceptance she now enjoys. Grinker feels that it’s so important for kids like his daughter (who, incidentally, has held a job since she was fifteen years old where she is responsible for supervising and taking care of five-year olds at a public zoo!) to be lumped in with the rest of the kids on the spectrum. I’m sorry, but I fail to see what good can come of comparing a child like his 18-year-old daughter to a non-verbal, self-injurious, diaper-wearing 18-year-old. Unless, of course, your goal is to further dilute the pool of autism diagnoses, thereby minimizing the suffering of the severely affected - or, to further support your outlandish statement that the rate of autism hasn’t increased. Honestly, there were so many bizarre proclamations made by this man, I could go on all day. But I just want to give you one more quote to show just how out of touch Grinker is. He actually stated that there are a lot more people with Asperger’s who have a harder time holding down a job than someone with more classic autism! He seriously said it!
I sent an e-mail to the event coordinators to let them know what I thought of Mr. Grinker. The person who responded was very gracious, and appreciated my candid critique of the forums. She also indicated that while she agreed with some of what he said, she also completely disagreed with some of what he said. I look forward to future forums by the LEND Program, which has a goal of making “real world impact on the lives of the 3.8 million children with developmental disabilities in the U.S.”, and I hope they choose speakers that actually admit there is a problem, with topics that can actually help achieve that goal.
I want to make one more point here, and to finish what I tried to explain to Mr. Grinker about the pertussis outbreak here in Minnesota. In mid-May, I got a call from an epidemiologist at our county health department. One of the kids in my daughter’s DI group had been diagnosed with pertussis, and after interviewing the family, the county identified specific children who had had a lot of contact with this child. They were making calls to all of those families to warn us, and to advise prophylactic antibiotics. I took the opportunity to ask a lot of questions, and the answers were quite surprising.
My daughter’s friend had started showing symptoms in early April, so it was assumed that if my daughter was not showing symptoms, she was probably okay. I asked what would happen if she had it, and it went untreated. He replied that pertussis will clear on it's own, but people who get it may have to endure a nasty cough for many weeks. He also said that even with antibiotics, the cough would not be relieved. Antibiotics would only help shorten the contagious period. I asked if there were severe, long term consequences - like sterility or organ damage - and he said no. He told me that pertussis is usually very mild, and many people go undiagnosed and untreated with no negative side effects. The only group for whom pertussis is a risk is infants.
I then asked how my daughter’s friend could have caught this disease, and why they would worry that it could be transmitted, when every one of the kids in the DI group had been vaccinated against pertussis. He told me that they have found that the vaccine works for a maximum of five years, but that in many cases, kids have contracted pertussis very soon after being vaccinated (!), so the vaccine doesn't have any guarantees - which is why they are now recommending yet ANOTHER booster for kids around my daughter's age (11).
I said, "That's ridiculous - if the vaccine doesn't even work in most kids, why bother? Wouldn't it make more sense to let them get this disease naturally around this age, when they're young and strong - so they can develop a natural immunity to it?" He replied that pertussis is not a disease you can become immune to. "WHAT??" I replied, "How can you then lump this vaccine into the category of 'immunizations'? Isn't that falsely leading people into believing that by taking the shot, they will become immune?" He agreed! After 45 minutes of discussion, I took his phone number and told him I would call back if I had further questions.
The following day, a notice was sent home to every student at the school about pertussis. The contagious period is from the time of the first cold-like symptoms until 21 days after coughing begins. The epidemiologist had told me that the first symptom is not a cough, but typical cold-like symptoms of a runny nose. The cough begins to develop later. I thought about the number of places I had been, things I had touched, people I had been near in the past DAY, not to mention the past month, and realized that there is no way they can prevent this disease from being spread, or determine whether it was spread by a vaccinated or unvaccinated person! But I braced myself for the coming news reports: "Deadly Pertussis Outbreak Spread By Unvaccinated People..."
And here we are, with people like Roy Grinker happy to perpetuate the lie. As to what the point of Grinker’s presentations are – who knows? He admitted himself that he contradicts himself with his own statements. I just hope no one else pays good money to hear the absolute BS this guy regurgitates!
Patti Carroll two beautiful children, one of whom was severely vaccine-injured, but has improved greatly due to many years of treatment for his injuries. She is a Rescue Angel for Generation Rescue, and volunteer for a number of autism advocacy organizations. She serves on the board of Parents United Against Autism, and works as a special education paraprofessional.
I recently had the unpleasant experience of sitting through not one, but two forums that featured Roy Richard Grinker as featured speaker.
I attended these forums by invitation from the University of Minnesota LEND (Leadership Education in Neurodevelopmental and Related Disabilities) group. The LEND program is not new, but the U of M chapter is, and this was the first public forum presented by the group. I knew the organizers were thrilled to have Grinker, and I’m sure to most academic types, he seems impressive. I, of course, was doubtful, knowing Grinker had blatantly published inaccurate information in his book.
The first 90-minute session was for professionals and academics, and carried the subtitle: “The Effect of Culture on the Recognition and Prevalence of Autism Spectrum Disorders”
The flyer indicated that: “Professor Grinker, researcher, writer, and parent, will describe the current state of research on autism prevalence and diagnosis from a global, cross-cultural perspective. In addition to describing the role of epidemiology in autism research, he will present data from his epidemiological project in South Korea, and discuss research on early diagnosis among Zulu toddlers in South Africa and Mexican migrant farmers in Florida.
Although the description of this lecture would lead one to believe that there would be much discussion about autism prevalence in other cultures, Grinker wasted no time in revealing his true agenda, which was to disprove that autism has actually increased at all over time. He claimed that prevalence actually means proportion, while incidence represents the rate of new cases over time. He then stated that the currently reported incidence of autism is incorrect. Now, had this man backed up that declaration with any good data whatsoever, it would have been a pretty powerful statement. But what followed was a ridiculous collection of anecdotal statements, cheesy graphs and power point slides, and sly digs at virtually any source showing that autism is increasing. He incessantly used the phrase “WE know…” and frequently referred to his own commentary and rebuttals to bolster his arguments. He said repeatedly that he was not aware of any data (or studies, or literature) that presented different facts, which was actually quite laughable, because the whole basis of his argument was that people who are looking for something (namely autism) will find it everywhere! I guess it goes both ways. When you purposely DON’T look for something, you can claim you “aren’t aware” of it.
One of the more absurd observations he made was to present a slide of the U.S., showing the rate of autism in each state, then showing a slide of the U.S. that showed the number of autism services in each state. He used the examples of Alabama (with the lowest rate of autism and the lowest number of services) and New Jersey (with the highest rate of autism and the most autism services available). In what was intended to be a dramatic “Aha!” moment, Grinker purported that the reason there are more kids diagnosed with autism in New Jersey is because there are more services there.
Yeah right – if we build it, they will come. No data was presented whatsoever as to what came first – the need for services or the services themselves, and of course, he conveniently neglected to mention the fact that New Jersey is the most vaccinated state in the nation, to go along with their distinction of having the highest rate of autism in the nation. Another sad attempt to prove his point was when he used the hidden “FedEX” arrow slide to show that even though you don’t necessarily see something right away, it doesn’t mean it isn’t there. I guess this was meant to show people that autism has always been around us, we just didn’t notice it before.
Grinker spent only 15 minutes out of the first 90-minute presentation talking about his research in other cultures. This included showing a clip from a 2005 Korean film that featured a person with autism, which he claims brought great awareness of autism to Korea. He made a really weird statement about Korean moms being “happy” when they have a child with autism, and revealed that his conclusions about prevalence in Korea were based largely on focus groups run by Grinker himself. This was one of the times he said “I don’t know of another study…”, and then claimed the work was “…what we consider to be the most rigorous…” Uh, yeah – I guess you could consider your work the most rigorous, when it has never been done before! I found it peculiar that Grinker (who is an anthropologist, not a psychologist) mentioned during the second forum that in his research in South Korea, 75% of the kids they diagnosed in their study had had no autism services in the past. What is an anthropologist doing making autism diagnoses during an epidemiological project?
There were far fewer people at the second presentation, which was geared toward the “Community”, and held at the MN Department of Health. This talk was very similar to the first talk, but I noticed that Grinker was even more outwardly contemptuous of anyone who disagreed with him. I didn’t think he could be more arrogant and self-important than the morning session, but I was wrong. Maybe he felt more secure in the Department of Health setting to spew his propaganda. Some of the lowlights included dissing parents who use chelation and supplements, bringing up the Chicago Tribune article on OSR, mentioning the NYT article about the pertussis epidemic - blaming it (of course) on unvaccinated populations, and saying that even though the increase in autism “feels like an epidemic, science shows it’s otherwise”. During the Q&A afterward, I called him out on this statement. I asked what “science” he was talking about. First, he actually tried to claim he didn’t say it, but I referred to my notes and repeated what he had said. Then he backed down, and said “What I should have said is that there is no scientific evidence for the increase in autism”. I responded, “Is there any evidence that it’s NOT increasing, though?” Here he went back to claiming how hard it is to prove that there is or isn’t an increase in incidence, prevalence studies are so hard… blah, blah, blah. From there he jumped right to saying that “Today the state of California declared an epidemic of pertussis – due to high rates of unvaccinated people”. So I guess in Grinker’s world a few hundred people getting a highly contagious disease unquestionably constitutes an epidemic, but 1% of the population having autism (and Grinker thinks the incidence of autism is actually closer to 2%) isn’t anything to be concerned about. Wow. I interjected at this point that we had had a similar pertussis situation recently in Minnesota, and he interrupted, asking if there had been an epidemic declared. I responded that they called it an “outbreak”, and had just managed to say that it had been among VACCINATED kids before he cut me off again.
There were several other good questions from the small audience, and one woman brought up the Hertz-Picatto (sp?) prevalence study. Grinker’s response to this was to again refer to his own rebuttal letter regarding this study, and then revert to blathering about the variables, quantifying awareness, the poor quality of the dataset, blah, blah, blah. Someone asked about doing a study of vaccinated vs. unvaccinated populations, and Grinker’s response was that it would be too difficult to do, and would be “unethical” anyway. This was a pattern throughout both presentations – claiming that incidence studies are incredibly difficult, and most often incorrect – but expecting the audience to accept his opinion as the gospel truth.
It’s no surprise that Grinker wholeheartedly supports the addition of Asperger’s to the DSM-V. He spoke at length of his daughter, and how wonderful it has been for her to achieve the level of acceptance she now enjoys. Grinker feels that it’s so important for kids like his daughter (who, incidentally, has held a job since she was fifteen years old where she is responsible for supervising and taking care of five-year olds at a public zoo!) to be lumped in with the rest of the kids on the spectrum. I’m sorry, but I fail to see what good can come of comparing a child like his 18-year-old daughter to a non-verbal, self-injurious, diaper-wearing 18-year-old. Unless, of course, your goal is to further dilute the pool of autism diagnoses, thereby minimizing the suffering of the severely affected - or, to further support your outlandish statement that the rate of autism hasn’t increased. Honestly, there were so many bizarre proclamations made by this man, I could go on all day. But I just want to give you one more quote to show just how out of touch Grinker is. He actually stated that there are a lot more people with Asperger’s who have a harder time holding down a job than someone with more classic autism! He seriously said it!
I sent an e-mail to the event coordinators to let them know what I thought of Mr. Grinker. The person who responded was very gracious, and appreciated my candid critique of the forums. She also indicated that while she agreed with some of what he said, she also completely disagreed with some of what he said. I look forward to future forums by the LEND Program, which has a goal of making “real world impact on the lives of the 3.8 million children with developmental disabilities in the U.S.”, and I hope they choose speakers that actually admit there is a problem, with topics that can actually help achieve that goal.
I want to make one more point here, and to finish what I tried to explain to Mr. Grinker about the pertussis outbreak here in Minnesota. In mid-May, I got a call from an epidemiologist at our county health department. One of the kids in my daughter’s DI group had been diagnosed with pertussis, and after interviewing the family, the county identified specific children who had had a lot of contact with this child. They were making calls to all of those families to warn us, and to advise prophylactic antibiotics. I took the opportunity to ask a lot of questions, and the answers were quite surprising.
My daughter’s friend had started showing symptoms in early April, so it was assumed that if my daughter was not showing symptoms, she was probably okay. I asked what would happen if she had it, and it went untreated. He replied that pertussis will clear on it's own, but people who get it may have to endure a nasty cough for many weeks. He also said that even with antibiotics, the cough would not be relieved. Antibiotics would only help shorten the contagious period. I asked if there were severe, long term consequences - like sterility or organ damage - and he said no. He told me that pertussis is usually very mild, and many people go undiagnosed and untreated with no negative side effects. The only group for whom pertussis is a risk is infants.
I then asked how my daughter’s friend could have caught this disease, and why they would worry that it could be transmitted, when every one of the kids in the DI group had been vaccinated against pertussis. He told me that they have found that the vaccine works for a maximum of five years, but that in many cases, kids have contracted pertussis very soon after being vaccinated (!), so the vaccine doesn't have any guarantees - which is why they are now recommending yet ANOTHER booster for kids around my daughter's age (11).
I said, "That's ridiculous - if the vaccine doesn't even work in most kids, why bother? Wouldn't it make more sense to let them get this disease naturally around this age, when they're young and strong - so they can develop a natural immunity to it?" He replied that pertussis is not a disease you can become immune to. "WHAT??" I replied, "How can you then lump this vaccine into the category of 'immunizations'? Isn't that falsely leading people into believing that by taking the shot, they will become immune?" He agreed! After 45 minutes of discussion, I took his phone number and told him I would call back if I had further questions.
The following day, a notice was sent home to every student at the school about pertussis. The contagious period is from the time of the first cold-like symptoms until 21 days after coughing begins. The epidemiologist had told me that the first symptom is not a cough, but typical cold-like symptoms of a runny nose. The cough begins to develop later. I thought about the number of places I had been, things I had touched, people I had been near in the past DAY, not to mention the past month, and realized that there is no way they can prevent this disease from being spread, or determine whether it was spread by a vaccinated or unvaccinated person! But I braced myself for the coming news reports: "Deadly Pertussis Outbreak Spread By Unvaccinated People..."
And here we are, with people like Roy Grinker happy to perpetuate the lie. As to what the point of Grinker’s presentations are – who knows? He admitted himself that he contradicts himself with his own statements. I just hope no one else pays good money to hear the absolute BS this guy regurgitates!
Patti Carroll two beautiful children, one of whom was severely vaccine-injured, but has improved greatly due to many years of treatment for his injuries. She is a Rescue Angel for Generation Rescue, and volunteer for a number of autism advocacy organizations. She serves on the board of Parents United Against Autism, and works as a special education paraprofessional.