Just call me “Captain Buzz-Kill”
July 24th, 2009
Over the years that I’ve been writing this ‘blog, I’ve often been accused of keeping people from “curing” or “helping” their autistic children. I’ve always wondered what they meant by that, since I’m not doing anything I know of to prevent people from seeking whatever treatments they want for themselves or their children.
All I’m trying to do is give people information. If they are already happy with the information they have, if they have already found “The Truth”, all they have to do is ignore me.
It’s really that simple.
During a recent conversation, it finally came to me what all of those parents (and not a few practitioners) have really been telling me.
What actually bothers people is not that I am somehow standing in the way of them getting the treatments they think their children need – which is patently ridiculous - but that I am threatening their false hope. To borrow from the jargon of my youth, I’m killing their buzz. [Note: for people who were not part of the psychedelic '60's, this means that I am interfering with their enjoyment of an unreal state of mind]
Now it all makes sense! You see, while real hope is based in reality, false hope is destroyed by reality.
At some level, these angry parents know that their hope isn’t real - that’s why they are so angry with me for speaking truth to fantasy. If they were truly convinced that they were right, they wouldn’t get so upset.
If - for example - they were treating their child with antibiotics for pneumonia and somebody on a ‘blog somewhere in cyberspace was writing that antibiotics are worthless for treating infections and are all just a sham to make money for doctors and “Big Pharma” (which, sad to say, has been written on at least one ‘blog), I doubt that they would be upset. Amused, perhaps, but not upset.
One of the problems with false hope is that it is - at its heart - a lie. The people who provide the false hope may not consciously know that it is a lie and the people who believe in the false hope almost certainly aren’t consciously aware that it’s a lie, but it is a lie nonetheless. And, as most of us have discovered, one lie is never enough - to keep the first lie going, you have to tell more lies. This is true even when you are lying to yourself. You can see this in the way that many of the so-called “alternative” autism therapies are rationalized.
Let’s look at thimerosal and chelation, as an example. First, it was claimed that the rise in autism prevalence was due to mercury in the vaccines and that chelation would produce a cure. At first, it was claimed that a “few months” of chelation would “cure” or “recover” most autistic children. When this didn’t happen, the claims slipped from “months” to “years” without explanation.
When thimerosal was taken out of children’s vaccines, it was claimed that the continued rise in autism prevalence was due to “trace” amounts of mercury still in vaccines (disregarding the fact that the amount of mercury was far less than before the “autism epidemic”). When that was challenged, it was claimed that mercury from power plants, crematoria and even drifting across the ocean from China was the source.
When that proved untenable, the claim morphed from mercury to more vague (and harder to refute) “toxins” and then to the lamentable “too many, too soon” argument - the acme of vague and undefined. All this to prevent a group of people from confronting the fact that they are living on (or profiting by) false hope.
This is probably a good time to introduce the concept of “cognitive dissonance”. Cognitive dissonance – in simple terms – is the sense of unease people feel when they are trying to reconcile two contradictory ideas. In most people, this occurs when what they believe to be true (fantasy) is in conflict with what they know is true (reality). This is an uncomfortable place to be, psychologically, and most people (so my psychologist friends tell me) will avoid it if they can.
The best way to deal with cognitive dissonance is to resolve it – to consciously decide which of the contradictory ideas to keep and which to discard. Apparently, in conflicts between fantasy and reality, it makes no difference to your sense of well-being whether you discard the fantasy or the reality. Of course, if you discard reality in favor of fantasy, you will sooner or later encounter new opportunities to experience cognitive dissonance, as your false view of reality repeatedly comes in conflict with reality itself. It’s a bit like someone deciding that they would rather be driving through Colorado and so uses a Colorado road map, despite the fact that they are in Kansas – they keep bumping into situations where their false reality is contradicted (often quite forcefully).
However, my psychologist friends tell me that most people faced with cognitive dissonance use “avoidance” rather than facing their conflict and resolving it. They simply avoid, ignore or flee from situations where their fantasy is in conflict with reality. Over time, the “places” (physical and psychological) that they have to avoid grow in number. Interestingly, they also tend to lash out at people who remind them of their unresolved conflict, often accusing them of some sort of personal attack when none exists.
Does this sound like anyone you know?
Strangely enough, this insight provides me with a faint glimmer of hope. Clearly, the people who lash out when they are confronted with information have not yet resolved to abandon reality. They are still bothered – at some level – by the fact that their fantasies about autism are not supported by reality. There is still some hope that they will eventually – when the pain of their cognitive dissonance is severe enough – decide to give reality a chance.
I guess my job is to keep flinging reality at these folks until they are forced to make a choice. And hope they choose reality.
Just call me “Captain Buzz-Kill”.
Before someone accuses me of gloating or schadenfreude, let me say that I was one of those parents who bought the false hope and experienced the cognitive dissonance. I have immense sympathy for parents who find themselves in the same position today (or tomorrow). My purpose is not to ridicule them but to help them to find a way out of their dilemma. I’ve been there and I know a way out.
Of course, there are a few people who will be unable to make a choice – or will feel compelled to choose fantasy over reality. They are people who have stepped so far into the false hope of autism that they feel they cannot turn away. Some of them have “invested” their reputations in a very public way (often publically excoriating – and even slandering – people who disagreed with them) and may feel that the humiliation of admitting that they were wrong would be greater than the humiliation of persisting in error.
Others have profited greatly from the false hope they believed in and feel they cannot choose reality without facing real consequences. For these people, the cognitive dissonance is far less than the fear of the wrath of the parents who bought their false hope. I note that while several ”DAN!” (a group emphasizing the “alternative” and “biomedical” treatment of autism) practitioners have quietly dropped out of the “autism business”, few (or none) have publically admitted they were wrong. Perhaps none of them do think that they were wrong and they really dropped out of “alternative” autism practice to “spend more time with their family” or “to limit their practice”, but I like to think that at least one or two of them “saw the light” and quietly slipped away.
I don’t have any easy solutions for those “alternative” autism practitioners who find themselves facing the conflict between their autism fantasies and cold reality. They should have known better - at least better that the parents who trusted their expertise and followed their suggestions. However, even doctors are human and make mistakes. The best solution is to admit the mistake – at least to themselves – and move on in the proper direction. It would be an even larger mistake to keep on “believing” in order to evade the consequences.
Prometheus
Filed under: Autism Practitioners, Autism Treatments, Critical Thinking, Help for the bewildered
July 24th, 2009 at 8:55 pm
F**k you
[Editor: the "**" was inserted to keep this a family 'blog. I would normally have deleted this comment, as it offered nothing substantive to the discussion, but it so nicely proved my point that I had to approve it - with "modification".]
July 24th, 2009 at 9:02 pm
Yes. Yes. YES!!!!
Not to mention the fact that if you abstain from using your child as a scientific guinea pig you are shunned and wear the scarlet letter of defeat and laziness.
UGH!
glad I found your blog.
July 24th, 2009 at 10:28 pm
I’ve definitely encountered a lot of that attitude.
July 25th, 2009 at 5:34 am
Maybe the “buzz-kill” is seeing very high-functioning people with “autism” be so successful and knowing that their own child will never be the same and may end up in an institution. Maybe the “buzz-kill” is anger over desperately wanting a cure for their severely disabled child so they can have a good quality of life but have others say they only need to “accept” their severely disabled child that self-mutilates and smears feces and that could very well grow into a severely disabled adult that acts the same way.
July 25th, 2009 at 8:59 am
Hi Captain Buzz-Kill! I like it. I also like this post. Well written and very compassionate while still getting your point across. It’s a worthy cause, to help people recognize their own cognitive dissonance, and one that needs attention.
July 25th, 2009 at 5:14 pm
I’ve never detected a hint of gloat in your posts, which seek only to lay out the facts so that people can make informed decisions. It’s unfortunate that people feel personally attacked when the facts don’t support their choices. Perhaps it’s just a “cultural” difference of sorts. I can’t begin to understand people who don’t require scientific backing of any invasive therapy they choose to try on their children. They probably can’t begin to understand me for being so closed-minded to therapies that have such devoted followings (after all, if so many people are so devoted, there must be something to them, right?)
I just wish this culture difference didn’t so divide our community. We could be so much more powerful on behalf of our children if we could find more common ground.
July 25th, 2009 at 7:06 pm
Great post..makes a lot of sense. I find that when I tell people that I am not seeking to “cure” my children-I get the same tired vitriol-that because I accept that my kids are affected by autism-I don’t do anything to help them-which is so far from the truth. When I argue that point-I’m told that my kids aren’t “severe” enough…and when I discuss my childrens disabilities..I am told (this was in the comments of this weeks blog post) It is my fault they are brain damaged because I vaccinated them. My question is-how do you break this cycle? How does one go about getting people to recognize this? can it be done?
July 25th, 2009 at 9:04 pm
Maybe if your child displays incidences of challenging and problematic behavior, you could actually try research based interventions such as positive behavior support and functional behavioral analysis instead of feeling sorry for yourself and following quack autism treatments.
July 26th, 2009 at 5:22 am
This is a very insightful post and a coherent and (I think) correct interpretation of what goes on here. Perhaps it skims too lightly over the impact of desparation on people’s decision making. Also, those without a good understanding of science rely on expert opinion. Your only way to chose those experts may come down to their charisma and offer of hope/effectiveness.
July 26th, 2009 at 8:54 am
Dear Captain Buzzkill:
I have also seen the light! To love your child as they are is FREE, there is no cost financially or emotionally. In fact, the payoffs are GREAT! One must, however, give up the notion of being ones child’s Savior. You may have to work,but it will never be more than you can give thankfully.
Or I could be full of it….
July 27th, 2009 at 4:18 pm
As a kid growing up in a MD’s household, I could always see what pharmaceutic sales people saw my dad by the new stuff in the medicine cabinet (my dad wasn’t prescribing stuff that his family hadn’t tested). Pre-internet, that was the main source of information on new stuff for the non-academic, aside from the (also industry-controlled) trade magazines. So I wonder how many DAN enthusiasts fell for the marketing campaigns of the alternative racket, to (years) later see the light of “it’s not working” when even the continuing education credits at the golf resort can’t make up for failure anymore. It takes years to judge “success” of any autism treatment, and recognizing that you’ve been duped into selling snake oil may also be a case of cognitive dissonance on the side of the practitioner.
July 27th, 2009 at 6:39 pm
I think you’re mainly right, Rose.
Hey buzzkill, IMO you should keep on truckin!
I have watched the argument go from focused on Mercury to vague environmental nasty’s.
While I’m not saying there aren’t nasties out there (non-viable fish embryos/mutated frogs in the news?), or weren’t some sick mistake like an ash sludge pond breaking, (Tuskegee air duty anyone? Even sicker), I do believe the snake oil/”other convenient miracle therapy” curists indeed need the reality check.
July 29th, 2009 at 4:04 pm
Three cheers for Captain Buzz-Kill! I think, at a certain point, when faced with the overwhelming confusion of all the information (and counter-information) thrown at parents, we tend to pick something and cling to it for dear life, even at the cost of logic. Because if you don’t believe in something, you’ll just believe in nothing, right?
Without the power of research and science to sort through the confusion, parents are more likely to become evangelists of whatever miracle cure they’re banking on. Not only do you desperately want to believe you can cure your son with Treatment A, you want everyone else to believe it too, and anyone who says otherwise obviously doesn’t want your son cured. *nod nod nod*
I personally have nothing against any treatment, as long as it can be proven to work. But if you can’t prove it, and you still keep trying to sell it, then you deserve a kick in the teeth for wasting my time, my money and my son’s chance at recovery.
I’m glad there are people like you out there, Cap’n, who look at the info with more objectivity and less evangelism than some others can manage.
*salute*
July 31st, 2009 at 11:40 am
Prometheus,
Have you ever looked the folate/autism connection? It came up in a discussion with my adviser. I know the autism ‘epidemic’ is very debatable, but I thought this was an interesting possibility. Any thoughts?
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WN2-4SN8VCG-3&_user=963248&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=970307099&_rerunOrigin=scholar.google&_acct=C000049490&_version=1&_urlVersion=0&_userid=963248&md5=9fab2f1c7b1cb0c62ca4dae0f3981e4d
July 31st, 2009 at 4:37 pm
Hear hear Captain BuzzKill.
It is our responsibility to constructively critique any solution that is offered to our children. This naturally presupposes that we ASK and NOT blindly accept data. It’s a powerful methodology that we as smart guardians apply to all solutions, including our own.
Keep up the good fight Cap’n!
August 1st, 2009 at 2:13 pm
Zfish,
I am always reluctant to give much credence to anything published in Medical Hypotheses - they proudly reject peer review and charge by the page. It is more of a “vanity publication” for wannabe researchers than a true scientific journal.
However, there has been some research into a possible “folate connection” in autism. The “article” you cite attributes the rise in autism prevalence to increased folate intake by pregnant women (to reduce the risk of neural-tube defects) and the MTHFR (5-methylenetetrahydrofolate reductase) C677T polymorphism.
In a most timely coincidence, the 19 August 2009 edition of Psychiatric Genetics has a study by Mohammad et al that shows the MTHFR C677T polymorphism is associated with a 2.8-fold risk (95% CI 1.6 - 4.9) of autism. This, in a country (India) which has not seen widespread use of folate supplementation. So, it would seem, this polymorphism is associated with autism even in the absence of folate supplementation.
Interestingly, this same study shows that the presence of another MTHFR polymorphism - A1298C - acts synergistically with MTHFR C677T to increase the relative risk of autism to 8.1-fold (95% CI 2.8 - 22.9).
Pasca et al (Journal of Cellular and Molecular Medicine, August 2008) did a more detailed look at the association between the MTHFR C677T polymorphism and autism and found only a weak association with “classic” autism and none with “autistic spectrum disorders” or Asperger’s syndrome.
Goin-Kochel et al (Autism Research, April 2009) found associations between the MTHFR C677T polymorphism and certain behaviors characteristic of autism, but this was a preliminary study.
In short, there isn’t a lot of data pointing to folate “overdose” as a cause of autism, even though there appears to be an association between certain MTHFR polymorphisms and autism. As always in the “alternative” autism therapy “biz”, there will be people willing to propose and try treatments based on the flimsiest of data. I’d be interested to know what - if any - remedies have been proposed to “treat” this alleged intrauterine folate “toxicity”.
Prometheus
August 1st, 2009 at 10:27 pm
Food for thought there, and I am a vaccine questioner, although not fully invested in biomed for various reasons. We did chelation and saw some results, but we saw more from the supplements we gave our son prior to the chelation.
Here’s the thing. And I’ll try to be honest here, as I found your piece hit a lot of psychological notes, and offered a slice of truth at least from where I’m sitting. It’s a trust issue with mainstream med that FUELS it all. I saw my son regress before my eyes. I know (feel very strongly) it was related to the vaccines he just had. I know there are cases (Banks, Poling) that are similar to what happened to my son - that vaccine injuries occur and that’s what happened. Then you see that the mainstream belittles, ignores, etc, and does not acknowledge the potentiality of a subset of children who ARE vaccine damaged.
You hear again and again - you’re crazy, it didn’t happen that way, it couldn’t be vaccines because they are good for you and safe etc. DENIAL, INSULTS.
It is frustrating to say the least and infuriating to be more accurate. So I have been befriended by the world of biomed who knows what I know on this.
WHAT NEEDS TO BE DONE: The trust needs to be regained. Honestly if 2 or 3 of the groups we trust (SafeMins, Age of Autism, Generation Rescue etc) were given the opportunity to design and control a solid study with a tried and tested research team of vaccinated vs. unvaccinated vs differently timed vaccinated vs partially vaccinated type of study, and they agreed to it completely and we all were on board, I would trust and embrace the results. If there was no relationship shown then, I would be able to move on, believe the lack of a relationship that some say is the case now without sufficient evidence to do so.
You want a huge and growing group to get back behind mainstream science, then you have to do the real science, and not continue to violate the reality we have seen. Back to cognitive dissonance - we need to see the REALITY of real true research done vs. the LIES (FANTASY) of what we are told is a closed case.
August 3rd, 2009 at 12:18 am
Marni,
The “trust issue” is the result of a “manufactroversy” cooked up by some of the very groups that you say you trust. The question I have - and will try to explore in a later post - is why people trust these lay groups more than they trust the people who are actually doing the research.
Of course you are going to side with parent groups that claim to “know what you know” about the autism-vaccine “connection”. You might be interested to know that I also once believed in such a connection. What changed my mind wasn’t trust, but data - the data don’t support the connection. If that feels like denial or insults to you, so be it.
As far as SafeMinds or any of the others designing and “controlling” a study - all they have to do is do it. There is nothing preventing any or all of these groups from doing exactly that. I suspect that the reason they haven’t “done a study” (see http://photoninthedarkness.com/?p=154) is that they don’t care what the results would be - they already know the “truth” and no amount of data will ever change their minds.
Ask them. Write, call or e-mail these groups and ask them why they haven’t already done this study. It’s not due to a lack of money - they’ve spent hundreds of thousands of dollars on advertising. If they had spent that on an actual research study, they might have some data they could use - if they could do the study correctly (a very big “if”).
Frankly, whether or not the “huge and growing group” you refer to ever gets “back behind mainstream science” is completely irrelevant - at least to science. “Mainstream science” will continue with or without this “huge and growing group”. If the Pope couldn’t derail science back in Galileo’s time, I don’t think a group of parents will be able to do it in the 21st century. Science isn’t a popularity contest. The reality of a situation doesn’t change based on poll results.
Ask yourself - who are you hurting with your rejection of the data? Are you hurting scientists researching autism? Not really. Are you hurting doctors treating autism? Nope. Are you hurting you and your child? Possibly.
Prometheus
August 3rd, 2009 at 12:08 pm
Except even when one of those groups does participate and help design the study, they will reject it if the answers do not go the way they want.
Marni, go and read this blog posting:
http://scienceblogs.com/insolence/2007/09/a_bad_day_for_antivaccinationists.php
It is about a study that Sallie Bernard starting to criticize it before it was even released, and and: “Ms. Bernard was a consultant on this study and helped contribute to its design!”
August 3rd, 2009 at 2:27 pm
Nice work, as usual, Prome. Thanks for flying the flag of reason.
August 4th, 2009 at 3:00 am
Just found this site, and so relieved to finally find some no-nonsense, intelligent discussions re: autism. My son has Aspergers, and I’m so fed up with people looking at me with pity because of it. Having ASD is what makes my son the child we adore; why would I want to change that? Yes it’s challenging and exhausting, but I wouldn’t have it any other way!
August 4th, 2009 at 10:09 am
I don’t know if he was ever a DAN! doctor, but I think James Laidler is a good example of a doctor who did the whole biomed intervention circuit and has since left and been very vocal about the lies and deceit being promoted by those doctors.
August 4th, 2009 at 4:08 pm
I think an angle here that might be worth addressing is parental perception of their child as being “ok” until they got their vaccines. For myself, being a special educator, once I realized that my daughter had autism (which took a long time, because it’s a different thing meeting someone and being told they have autism versus watching your child grow up), I could look back and see a thousand incidences of small things that she had always done that in retrospect screamed “AUTISM!” However, most parents don’t have the luxury of knowing dozens of people with autism before their child has it.
For what it’s worth, too, most parents of children I’ve worked with have the same pattern, even if the disability isn’t autism (Unless the disability is a concrete, early diagnosis, like Down Syndrome). Their perception is that everything was fine until a certain event. In fact, they missed tons of subtle clues and the event in question just happened to be when they realized there was a problem, not when the problem started.
One of the biggest things I saw when working with early childhood special ed was parents assigning meaning to their child’s babble and jargon. Then as the child’s language skills stalled at that stage and the parents grew to understand that the verbalizations weren’t purposeful or functional, the parent’s perception was that the child has “stopped talking.”
Anyway, I’m babbling on, but since so much of skepticism is rooted in these kinds of ideas, it would be interesting if someone studied them, or more parents were aware that your personal judgment isn’t always sound.
August 24th, 2009 at 2:35 am
Maybe “autism parents” ought to stop acting like autism is the freaking end of the world. Before the experts started classing so many in the autism spectrum it was called “developmental delay” or was considered some sort of unspecified learning or social disability, as it was when I was in school. (The school did make a half-hearted attempt to intervene, but it didn’t do any good.)
Your autistic child is already frustrated–why put all that pressure on them to be perfect (and feel guilty for not being perfect)? Most children have various social and learning troubles because our brains all work differently. Why don’t you try working with your healthcare provider to figure out the best that is known today about your child’s condition and how to give them the tools to deal with the world and integrate into the public school environment (if at all possible)?
I did know one Aspie mother who homeschooled her two severely Aspie sons, but as a successful Aspie adult this was a labor of love (& acknowledgement that the school system where she lived in rural Ohio was truly awful). It seems likely to me that these frazzled, angry parents who are homeschooling their “damaged” children are stressing themselves out more and taking it out on the kid whether they know it or not.
It would have helped me if I’d been told at age 8 (or 4) what I now know about my condition and how to cope with it. However, I can’t imagine how much anguish I would have gone through if my parents had been convinced that I was abnormal in some sort of terrible pathological way and that “Big Whatever” had inflicted this odious crime on me. And yes, my parents *did know I was odd, but they weren’t conditioned to use it as the grounds to give themselves–or me–a complex about it.
Do CBT & whatever else to give your child the social skills to handle school. You don’t have to do it all (and shouldn’t!). Remember, normal children are socialized by interaction with other children. Isolating your child most likely will make your kid less able to deal with others when adulthood eventually comes.
I’ve got plenty of stories of neurotypical kids who were homeschooled and turned up in college poorly socialized. (And in case of the males, a danger to women.)
I’ve also seen untreated Aspie adults who were isolated by parents from the world. Unfortunately, they had habits that would make them hard to employ–and likely habits of mind that would make the world of the neurotypical an alien and scary one indeed. Fortunately with Asperger’s it’s possible to relearn and use other learning techniques to get around one’s natural shortcomings.
Anyway, you can tell I’m Aspie by the way I talk and talk…
I never met an Aspie who thought they became that way because of vaccines. Every Aspie I’ve ever known thinks it’s genetic (& with good reason). And even if some autisms are not genetic, one need only look over autism diagnosis and vaccination by country (also autism vs. retardation) to see that even the grossest correlation does not exist. You’re going to have to find the cause elsewhere. (Not that the cause, as a parent, is really all that important, except to note, contra the wild claims of the 1950’s, that autism is NOT caused by frigid mothers. Don’t feel guilty if your child has autism–that’s perfectly normal. Feel guilty when you hurt your child by pursuing harmful sCAM therapies like ear candling and chelation.)
Don’t sacrifice a generation of infants to measles and other deadly diseases for the sake of your martyrdom as an “autism parent”. Some neurotypical children wet the bed or show pathological aggression towards others. Some non-autistic children have severe diseases like CP, CF, or schizophrenia. Parents do ask “why me?”, but the healthy response is to find a strategy to handle the problem, not go on a blame campaign a la Sheila Brozlovsky in the movie SOUTH PARK, while your child pays the price for your anger, resentment, distraction, and delusions.
PS: I’ll take coping with autism over chelation every time. CHELATION KILLS KIDS. STOP DOING IT UNNECESSARILY.
August 24th, 2009 at 2:47 am
I understand the sentiment and I’m not trying to single you out. But I personally believe (as a high-functioning autistic adult) that’s it’s misleading to speak of recovering from autism as one might recover from a cold. The latter is an infectious disease (which one’s immune system, perhaps with the help of modern medicine, will hopefully expel). The former is a persistent physical condition.
One doesn’t recover from being born without limbs, for example. If they don’t grow during fetal development (due to a certain genetic error), they never will. You will live your entire life without arms and legs. However, unless your parents go crazy and treat you as an invalid and try to do everything for you, you will, physically and emotionally, cope with and adapt to your condition. You will learn to move about. You will become skilled at manipulating your environment to your advantage.
Sure, the guy with legs has an advantage over you. But that doesn’t mean you have no chance at all.
It’s similar with autism. Autism is the name for a menu of neurological disorders which have in common language difficulties early in life. As you grow older, autism doesn’t go away–but you do learn to live with it. Knowing more about it helps you deal with it and figure out ways around it. That neurotypical guy will always have an advantage over you in life. But that doesn’t mean you have no chance at all.
I’m amazed that people want to blame medical science for autism, when medical science is what identified autism, investigates the causes of autism (which might give clues to preventing or maybe one day with gene therapy even curing it/ameliorating it biochemically), and provides methods for coping with autism. Without medical science, many autistic adults would be doin’ time in the state mental hospital chokey instead of being integrated in society. Do soldiers who have lost legs castigate the doctors and engineers who provide them with functional prosthetics?!?!
August 24th, 2009 at 2:51 am
Zfish:
Sorry to call you out (and I did follow your link), but:
I know the autism ‘epidemic’ is very debatable
What debate? Looking at the CA data on incidence of retardation + autism, the rate hasn’t budged one iota–only the name for it has shifted. ASD = rebranding.
August 24th, 2009 at 2:53 am
Actually, Zfish, your link was lame. It begs the question, throwing any shred of plausibility out the window. Fer FSM’s sake.
August 24th, 2009 at 3:10 am
Prometheus–
Very interesting post for me. Seems like this particular issue needs more study, but there’s a chance at least one of these polymorphism, or maybe the combo, has a role in autism (which makes sense to me–but even if it didn’t, it some more replication of results would be compelling enough to change my mind), while the chemical cause (in this case folate) doesn’t even pass the smell test.
Why does everybody want to believe it’s “toxins” and resist the genetic hypothesis (which looks much more plausible–hello, it runs in families?)? If autism is caused by the environment, why doesn’t everyone have it? Contrawise, when you bring a little salmonella or gastroenteritis to a party, two days later almost everyone will be sick. The complete lack of basic plausibility here is just stunning.
And just because I can’t get off this subject:
Many people probably believe that cerebral palsy is genetic, like Down’s or Turner’s or whatever. It’s not. It’s usually caused by an injury that occurs at birth, damaging the nervous system for life. Severity can vary. Sufferers lack motor control, muscle tone, ability to cope with temperature changes or extremes, and may find speech–never mind simply moving around–physically difficult. Even though I could see parents naturally blaming the hospital for allowing their child to acquire CP, I have yet to see a widespread CP-centric anti-science, anti-doctor campaign. I know there are some angry, disaffected parents out there, yet I have completely yet to see any national or international effort to discredit medical science because of CP.
And yet autism, which is almost certainly not iatrogentic*, is blamed on doctors, public health, science, the modern world, etc, etc.
(*-I am being unfair here to obstetrics to make my argument by absurdity.)
Butbutbut, why was their no autism in the idyllic and glorious past? Because autistics were known as village idiots. Next!
August 24th, 2009 at 3:16 am
Jo–
I think you’d be pleased to learn that there are many, many adults living with Asperger’s and doing just fine. (The elementary school years are the worst.)
Most people I know don’t know I have it–in fact, when I tell people, they’re shocked. Of course, most people I know aren’t clinical psychologists. *I* think it’s obvious… of course, as an Aspie, I kind of have Aspie-dar. ~_^
August 24th, 2009 at 3:25 am
One of the biggest things I saw when working with early childhood special ed was parents assigning meaning to their child’s babble and jargon. Then as the child’s language skills stalled at that stage and the parents grew to understand that the verbalizations weren’t purposeful or functional, the parent’s perception was that the child has “stopped talking.”
Wow. I think you’ve finally explained my mother’s claim that I “started talking” or “was about to talk” and then “stopped”.
This conflicts with her account that before I actually started talking I used only one, invented word, which I used when pointing at objects to ask their name. (I also communicated by nonverbal whining.)
According to her, I finally did start communicating–progressing within two weeks to full sentences like Athena from the skull of Jove–barely a month before her self-imposed deadline on my aphasia becoming “really serious”.
August 29th, 2009 at 2:25 am
Hi not a gator. Please allow me to add a couple of visual examples of your statement, specific to california.
From
California’s Invisible Autism Epidemic
December 18th, 2009 at 10:00 pm
thank you for the wonderful blog and for all your painstaking research. (thank you most of all for your refusal to subject your son to the dubious cure-sellers out there.) autism “epidemic.” i have to giggle. it seems the methods of recognizing it have simply improved—now we’re more known and seen. (what the world does with this fact is beyond me; i’m just glad that we’re no longer the “village idiots,” as one poster suggested.
again: thank you for all you do. it’s refreshing to read the take of a parent who isn’t so terminally freaked out about his child’s autism that he’s willing to buy any shard of quackery out there. i just discovered your blog on a google search about HBOT (aggh!) i’m sure i’ll be reading you more.
December 18th, 2009 at 11:52 pm
ps: apologies about my assumption you have a son. i’d just been reading something by a father of an autistic child–also skeptical–and there was some confusion about identity.
thank you for the scientific perspective on all this. the “one-hit” cure has made little intuitive sense to me; i also believe a tight focus on such a thing only diverts resources from more realistic ways of addressing challenges. it’s good to solid research and analysis.