Temple Grandin is undoubtedly one of the most famous women with autism of our time. Trained in animal science, Dr. Grandin is a widely read author and noted speaker on autism. April is National Autism Awareness Month, and Dr. Grandin has a new book out, "The Autistic Brain." Together, this must have seemed like a good time for the New York Times to interview her. Unfortunately, the interview is superficial and not very illuminating, and what Dr. Grandin does say is disappointing. Her take on vaccines and autism, which apparently is elaborated upon in her new book:
Q: In your new book, “The Autistic Brain,” you seriously entertain possible links between vaccines and autism in children, links that scientists have vehemently dismissed.
A: Well, there’s only one vaccine that could possibly be a problem, and that’s the measles-mumps-rubella vaccine. Now that they’ve changed the vaccine, it has fewer antigens, and that would make it a lot safer. But with the old version of the vaccine, I have not yet come across a study that looked at regressives — when a child had some speech but lost it.
Q: There has been a highly emotional battle between mothers of autistic children and the scientists who dispute their theories.
A: I have talked to maybe five or six of those mothers, and that’s the reason I don’t pooh-pooh it. Those mothers have all described the same things. They all have the vaccine, and then they talk about fevers and the weird wailing that started in just a few days. When I brought this up to an expert and asked, “Have you ever studied the regressive group separately?” I got silence.
This is the problem when scientists speak about areas where they're not experts. I got a lot of flak for my post to my dad addressing vaccines, with people accusing me of being condescending and underestimating his intelligence, but this shows it's not an intelligence thing at all. (Plus, my dad is plenty intelligent--otherwise why would I bother to write that for him at all?) Grandin is obviously intelligent. She's also highly educated. She has a PhD in another field. But she's not an expert in vaccines, as her comments show, and that's the problem with scientists who speak outside of their area of expertise. Even the very educated amongst us can't know everything, and it becomes problematic when we use our reputation as scientists to promote something that we don't have the background knowledge to really understand.
So, Grandin. First, she's simply wrong about MMR formulation. Perhaps she's thinking of the DTP vaccine, which now includes an aceulluar pertussis component ("DTaP" or "TDaP") and therefore has reduced the amount of antigens in the vaccine (not that "excess" antigens are a problem for our immune system, which deals with literally millions of antigens on a daily basis, but that's another story).
She's also wrong about studies on regressives. As a scientist, why doesn't she do her own literature search, rather than "asking experts" and supposedly getting silence? Because she could find several such studies, like this study in the journal Pediatrics or this one in PLoS ONE, if she simply searched.
Her biggest problem, though, isn't just failure to represent the scientific literature or to understand the MMR vaccine. It's her over-reliance on anecdote. Simply by the numbers, this correlation between regression and MMR vaccination (or any vaccination) is completely expected. There are currently about 75 million children in the United States. It's estimated that anywhere from about 1 in 90 to 1 in 50 kids have some kind of autism spectrum diagnosis. Using the higher numbers for the sake of argument and easier math, that's about 1.5 million kids, and most are diagnosed between the ages of 1 and 5. The first dose of the MMR vaccine is at ~12-15 months of age--when many parents of children with autism are starting to realize that their kids perhaps aren't communicating like their peers or showing other characteristics of autism, and may think about getting them evaluated. That's a window of about 1500 days, in which the majority of those 1.5 million kids receive their diagnosis--so averaging a thousand kids a day. Some of those kids will have just gotten shots, and some will have the reactions Grandin mentions--fevers, crying--by chance alone. Some will also wear mismatched socks that day. Some will eat Cheerios for breakfast. But because these aren't in the news, moms don't remember the socks, Cheerios, or a thousand other things that their kid did that day that are just as relevant to developing autism as the vaccines they received.
Correlation does not equal causation, and in this case, many, many studies have *disproven* such a link. Talking to "five or six mothers" does not trump years of scientific data looking at many thousands of kids diagnosed with autism, and it's unfortunate both that Grandin has promoted this type of thinking, and that the New York Times interviewer considered that newsworthy enough to ask Grandin, out of everything else in her book.
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I think that this article is glib and condescending - you appear to have no comprehension of the degree to which parents of children with autism internalize blame, or seek *any* explanation for not having the perfect child of their fanatasies. There is no vaccine-autism link, period, but you need to communicate on the issues that drive people to believe so.
More importantly, and the reason for my comment, Temple Grandin is not 'an autistic'. She is a woman with autism, or (if you must place a single characteristic before her identity) an autistic woman.
You're right; that was dumb with my language and I've changed it. She describes herself as a "person with autism" so I've used that language.
I do, in fact, understand more than you realize how much parents blame themselves. However, environmental "causes" for autism--like the false vaccine connection--enhance this blame, when research shows that autism is instead almost wholly genetic. By promoting this, Grandin is only causing those parents more misery.
I agree that these arguments add to self-blame and misery, as well as pointless anger at governmenr / Big Pharma / doctors / partner or whoever. But no scientific argument will sway anti-vaccine believers - not MRI studies of the earliest brains, morphological or behavioural differences in neonates, prenatal differences in pregancy status, none of them.
Understanding a child with autism sometimes means getting down on the floor and imitating some incomprehensible, (apparently) non-functional behaviour. Understanding anti-science parents of children with autism requires the same. Belief systems have utility, such as bonding parents under stress and making sense of randomness.
The most important issue (for me) is "are you helping or harming your child", and some of the consequences of anti-vaccine beliefs are plain and simple child abuse - chelation, GFCF, stem-cell therapy and other unregulated treatments.
Argument has to appeal to parents to question those treatments, not drive them further away from scientific reason.
Stuart, I absolutely agree--but hearing their fears validated by a scientist who has been diagnosed with autism herself is supporting that belief system, which is not based in evidence. I don't think it has to be either-or: one can support the parents but at the same time fight against the misinformation that so many of these parents are hearing from people they trust, like Grandin.
My kids vaccinations are up to date.
I have autism myself (Aspergers), im from Europe,Austria, I know many parenst of autistic children, and yes, they usually show many autistic traits themselves and even more of them show illogical explanations of causes and treatments for their child...should we accuse them? no i think we should accuse scientific community for being biased towards these parents and vice versa, because homeopathic people (I don t know the propper word for those type of therapists) give them hope, false hope but it still is a hope, and that's why they turn towards alternative 'treatments', as in my case, I started GFCF diet when I was 14, for being casein intolerant, just as 95% of Asians, and 50%+ Europeans are intolerant, but my unsolved mistery is: how come parents blame special ed's.SLT,OT's etc.for being useless therapists but when it comes to chelation, and other alternative treatments which cost a lot more than conventional therapies they usually show no regret even if it harms their child and that is one big question, and it is really illogical, it seems to me that many people wonder why is that so. But even more illogical is when autism is caused eg. by perinatal hypoxia, I mean, your child obviously has brain damage, why are you taking your child to chelation th etc? Illogical, and there is really no explanations for such misbehaves. And I often notice that people (meaning parents of autistic children) argument against me until they find out Im autistic myself, and I find that really hypocritical. And I find these arguments of an animal slayer really naive and nonscientific, why would someone trust her just because she has autism, I never trust an alcoholic when getting in the liquor store. But I haven't had time to check on articles about nervous system inflamatory diseases that might cause autism, it seems more natural and apprehensive to me that menigitis might be one of the causes, I mean, if you can get hearing or visual impairment, or even profound mental retardation why someone couldnt get autism after meningitis? Correct me if I'm wrong.
Good response to Ms. Grandin's unfortunate approach, but I'm not sure there's any fault in the reporter's asking her about that topic. If I'd read that in her book, I'd certainly go right for that point, too. Not just because it's good for generating controversy in the reporting, but also because it warrants explanation.
"But no scientific argument will sway anti-vaccine believers – not MRI studies of the earliest brains, morphological or behavioural differences in neonates, prenatal differences in pregancy status, none of them."
Stuart, if that's true, then screw them. They're hazardous to people, whether you call them "an autistic" or "a person with autism" or "roast beef."
I say give them no quarter. They certainly don't reciprocate the nice. They are as "glib" and "condescending" as you accuse the writer here of being.
What I mean to say is "stupid" is stupid, whether it comes from "an autistic," "a person with autism," your momma, your daddy, or your buck-toothed granny with a hole in her panty.
And since there is absolutely no link between vaccines and Autism it is fairly clear that a scientist who is not a geneticist to be wrong. In fact, as has been long suspected, there appears to be a clear genetic link...
Autism Model in Mice Linked With Genetics
UC San Francisco Study Makes Significant Progress Toward Mouse Model of Human Autism, Researchers Say
http://www.ucsf.edu/news/2013/04/105111/autism-model-mice-linked-geneti…
My son has autism, he wasn't properly diagnosed until he was 5yrs old, he only received one vaccine at 2 months and due to an allergic reaction all his vaccines were put on hold. When he was 7 I joined a support group thinking it would do us some good, at the beginning there was many parents that were skeptical of a link. One week they decided to bring a guest speaker in who said ALL cases of autism were caused by the MMR vaccine and I was completely dismissed by him when I said my son wasn't vaccinated against MMR. After his long appalling speech he said his clinic would offer free blood tests to all the kids to show their parents that they had a toxic level of mercury in their blood and when the results were all in he'd come back to discuss our option. When he did supposedly my son had the highest toxicity level he had ever seen and told me he must have been vaccinated without my knowledge, now unless the broke into my house at night and vaccinated him this was impossible. He then went on his rant about how his "all natural" treatment usually cured a child within 6 months but could take up to 2yrs and even after they were cured their was a chance they'd still have to stay on it for at least 10yrs to prevent relapses. He spoke of the evils of the pharmaceutical companies and brainwashed doctors. Now anyone who had their head on straight would have seen "scam" written all over him once he mentioned that he's help people get medical loans to pay for his treatment if they could afford it. He went on to talk about how we were being robbed by the evil pharmaceutical companies who were only there to hold our children back even more and guilt tripped parents saying if they did not use his treatment their kids would suffer greatly and never reach their full potential. Between all the "all natural" pills and detoxes he wanted the kids to go on they were taking upwards of 28 different supplements a day. The cost for his treatment "depending on their toxic level of mercury" would cost anywhere from $1000-6000 for the first 6-12 months and would drop to $800-1500 a month until they were okay to come off the therapy. He also advised parents to STOP traditional therapies and his clinic would teach them real methods to help their kids thrive. Only myself and one other person did not buy into his crap, my son was on 2 pills, same medication, a day ($152/m before insurance) and the other child was on 4 pills, two different meds over 2 doses each ($320/m before insurance) both our kids also continued with their horrible traditional therapies. We also both quit going to the support group for a very long time. When my son was 9 we were invited to a picnic they were hosting, they invited all current and former members of the support group, and after talking to each other we decided to go with our kids because it would be nice to touch base again. By then most discovered it was a scam and were in a lot of debt, and sadly the kids who made the most progress were our children, their were still very behind and the ones who continued with the treatment were still holding up hope it would work because they were told their kids still had a lot of mercury in their blood. My son is now in grade nine and though he requires some spec ed classes he goes to 4 main stream classes with an EA. He will always have autism but we stuck with the long hard road which offered little hope of improvement instead of the miracle drugs and the easy way out that offered a bogus cure.
False hope is the worst kind of hope you can give a parent, the only person it harms is the child...and their pocket book. Our conventional treatments and and traditional therapies by the evil doctors and pharmaceutical companies cost us far less and gained us so much more ground. Seriously compare the costs of these "natural I'm not ripping you off the evil pharmaceutical companies are" treatments compared to the conventional and traditional therapies, it's not the evil ones ripping you off or making all the money, it is them! Funny how they spout that they are not ripping people off when they are raking in millions a year themselves, plus you tack "autism" or anything of the likes on it they charge you even more. Look at the ingredients on them, you can buy them cheaper if you strip those labels off of them. They were charging $22.50-31.00 on one autism site for one of the supplements that help them, Alpha lipioc acid, which you can get else where for $12. Acetyl L-Carnitine is $36.50 for 90, my cousin take this, he pays $20 for a bottle of 120!
Don't be fooled, everyone is it if for the money, and despite claims of things working no parents can say for sure how much better or worse it would have been without them. My son showed little improvement at first, then a bit more, and by 6th grade he had a huge "BAM" moment where things really came together. Even if the same happened on the other stuff it still had a chance of having nothing to do with the meds. But seriously look at the costs, shop around, and see how much these people touting cures are jacking the prices up just by selling them as a cure or treatment instead of for their other intended uses. If you are dead set on alternative, do it wisely, and don't go bankrupt buying off these so called autism/adhd/whatever else sites!
http://www.spectrumsupplements.ca/content.asp?node=383
Mike, of course they are hazardous to people, their own children and other people with autism. Children with autism (me included) do not have the luxury of telling parents to go screw. And the therapies they choose are child abuse.
There is a massive literature on how adversity and counter-argument drives belief systems to ever greater depths of fundamentalism. You have to feel and share the parents' pain, create common ground and build up - they have no headspace left for authoritarian experts. Complaining that they are just wrong, or stupid, or whatever, only confirms their rejection of scientific reason.
Alternative therapists are very good at simulations of empathy, concern and grass-roots understanding. They are selling exactly what the parents (but not the children) need to hear and feel.
So what the hell is wrong with her question “Have you ever studied the regressive group separately?” I got silence.
What's the big secret here? Wrong question/Wrong Field of study, yadada yadada. What's wrong with her question?
Your linked citations --> like this study in the journal Pediatrics or this one in PLoS ONE, if she simply searched.<--- were not done with US children. Small oversite.
OilyGeorge, she's a scientist herself--she should know how to search the literature, so why does she need to ask anyone?
And you are incorrect. The PLoS ONE study was indeed done in US children: "Children between 3 and 10 years of age were serially and prospectively recruited from the Pediatric Gastroenterology and Nutrition and LADDERS Clinics (MGH) in the years 2003 to 2005..." MGH =Massachusetts General Hospital, which is most certainly in the US. The other one was done in the UK. I'm curious as to what significant differences there would be between their population and US kids, especially US kids diagnosed with autism.
The PloS ONE was after the vx changed - convenient. Sloppy cites, you agree. Smoke and mirrors.
What's wrong with Temples question?
What do the years matter if people are still incorrectly claiming (like Grandin is) that the MMR causes autism? You are moving the goalposts. First any such studies, then need to be done in the US, now need to be done in the US between certain years.
I already explained what was wrong with her question. It's her method. She's a trained scientist. If I had a question about animal confinements (her field), the first place I'd go is to PubMed. If she had done that, she'd find these cites and others. Her "asking an expert" excuse in this interview is merely an inflammatory and misleading rhetorical device.
Oily George:
How was the American MMR vaccine changed? It has had the same measles, mumps and rubella components since its introduction in 1971. It started out with the Jeryl Lynn mumps strain from the beginning.
Please do not confuse the different MMR vaccines used in other countries. The UK introduced three different brands in 1988, and removed the two versions with the Urabe mumps strain in 1992 (six years before Wakefield's Lancet paper). Which brings up two questions:
1. Which MMR vaccine was Wakefield studying? Which of the three used in the UK between 1988 and 1992, and if so: why was there an American child using the American MMR vaccine?
2. If any MMR vaccine causes autism, then please post the studies dated before 1990 that show an increase during the 1970s and 1980s in autism in the USA due to the vaccine being approved in 1971.
Especially after the start of the Measles Elimination Program in 1978 where the MMR vaccine use was heavily favored. If the UK MMR program between 1988 and 1998 really affected autism rates, then there should have been a similar affect in the USA between 1978 and 1988 just because it is a much larger country.
Tara, person-first language is not universally loved by autistic folk. See for example Jim Sinclair's 1999 essay, reprinted at the link below
http://www.cafemom.com/journals/read/436505/
And this more recent essay () by Lydia Brown
http://autisticadvocacy.org/identity-first-language/
The latter essay has links to essays in favor of identity-first language ("autistic person") and essays in favor of person-first language ("person with autism").
There is a 2005 study from Japan:
Autism in the absence of MMR vaccine
Clinical bottom line
Autism rates in Japan continued to rise after the withdrawal of MMR vaccine.
H Honda et al. No effect of MMR withdrawal on the incidence of autism: a total population study. Journal of Child Psychology and Psychiatry 2005 doi: 10.1111/j.1469-7610.2005.01425.x
It has a rather elegant little graph showing that during the years that Japan did not give the MMR vaccine, but single, spaced vaccines -- the incidence of autism continued to climb.
Japan discontinued the MMR in favor of monovalent vaccines because the MMR formulation used in Japan used the Urabe AM9 mumps strain. While the Urabe strain has a high efficacy rate (75%-85%), it also has high rate of post-vaccinal aseptic meningitis. (However, the risk of aseptic meningitis from wild virus is about four-fold higher than from vaccine.)
I do not read Japanese, but I believe that Japan does not offer any kind of mumps vaccine, with predictable results: ongoing outbreaks of mumps with serious sequelae, such as a high rate of deafness post-mumps.
Japan has high rates of other vaccine-preventable diseases such as measles, rubella, and even shockingly, tetanus.
(Citations provided upon request; don't want to hang up in approval-land)
https://www.ncbi.nlm.nih.gov/pubmed/22926922
Can bronchoscopic airway anatomy be an indicator of autism?
Bronchoscopic evaluations revealed that some children have double branching of bronchi (designated "doublets") in the lower lungs airways, rather than normal, single branching. Retrospective analyses revealed only one commonality in them: all subjects with doublets also had autism or autism spectrum disorder (ASD). That is, 49 subjects exhibited the presence of initial normal anatomy in upper airway followed by doublets in the lower airway. In contrast, the normal branching pattern was noted in all the remaining 410 subjects who did not have a diagnosis of autism/ASD. We propose that the presence of doublets might be an objective, reliable, and valid biologic marker of autism/ASD.
To save you looking it up, the main structure of the lungs is in place by week 5 of pregnancy. (Pubmed 22926922)
Grandin says, "I have not yet come across a study that looked at regressives — when a child had some speech but lost it.
Here's the study:
H Honda et al. No effect of MMR withdrawal on the incidence of autism: a total population study. Journal of Child Psychology and Psychiatry 2005 doi: 10.1111/j.1469-7610.2005.01425.x
And despite the MMR administration falling to ZERO, the diagnosis of autism continued to rise.
There is also this one in addition to the Honda paper:
J Autism Dev Disord 2007; 37(2):210-7
MMR-Vaccine and Regression in Autism Spectrum Disorders: Negative Results Presented from Japan.
Uchiyama T et al.
Plus this one on the effect of mumps:
Pediatr Infect Dis J. 2009 Mar;28(3):173-5. doi: 10.1097/INF.0b013e31818a8ca8.
An office-based prospective study of deafness in mumps.
Hashimoto H, Fujioka M, Kinumaki H; Kinki Ambulatory Pediatrics Study Group.
I began exhibiting signs of autistic behavior when I was 3 years old in 1959. The MMR wasn't even invented until I as 8. It didn't make me any *more* autistic than I already was.
She glibly ignores all the documented families with pre any vaccine autistic issues.
That must explain why my doctor who treats autistic patients said if he was a betting man who would say the MMR caused autism in certain patients because every person who rapidly turned autistic who came in his office had recently had the MMR. Thank god for experts, right?
Temple Grandin is wrong on this, but go easy on her. Exactly as Tara points out, Grandin can be swayed by anecdote. I don't believe this is an issue of "I'm smart in one area, so I must be able to figure this thing out too", but rather a symptom of autistic thinking. Along with gullibility, and taking things too literally, I believe ASD style brains struggle with this specific situation (i.e. I reviewed this, it looks correct, it is therefore correct). If this researcher had actually been able to point at those journal articles, I imagine she would change her view.