在自闭症患者的家庭中，Laidler 医生一家的命运可能颇具代表性，值得我们思考。现将Laidler 医生的一篇著名文章贴在这里。言论虽有点过，但具参考意义。英文好的朋友请翻译一下。
-----------
My Involvement with Autism Quackery
James R. Laidler, MD
Ever since I began the Herculean (some might say Quixotic) task of exposing the quackery and pseudoscience surrounding autism, I have had people ask me, “Are you the same Jim Laidler who used to talk about chelation at autism conferences?” To them, the idea that I could once have been an impassioned supporter of the very thing I am now trying to debunk is hard to fathom. Well, everyone has something in their past that they are embarrassed about—and that is mine.
I consider myself to be a very scientific person. While growing up, I was skeptical and inquiring and naturally gravitated to the sciences. My first brushes with pseudoscience and quackery in medical school left me convinced that “it could never happen to me.” I was sure that my background and training would keep me from making the same mistake as “those people.” I was wrong.
A year or so after my son was diagnosed with autism, with no hope for cure in sight, I was feeling desperate for anything that might help him. My wife attended a conference about “biological treatments for autism.” She came back extremely excited, having heard story after story about “hopeless” cases of autism “cured” by a variety of simple treatments. I was initially skeptical, but my desperation soon got the better of me. We started out with the simple therapies—vitamins and minerals—but soon moved on to the “hard stuff": the gluten- and casein-free diet, secretin, and chelation. Some of it seemed to work—for a while—and that just spurred us to try the next therapy on the horizon. I was “hooked” on hope, which is more addictive and dangerous than any “street” drug. Meanwhile, my second son developed an autism-like disability at the age of 18 months.
The next year, I accompanied my wife to the autism conference and was dazzled and amazed. There were more treatments for autism than I could ever hope to try on my son, and every one of them had passionate promoters claiming that it had cured at least one autistic child—usually their own. There were blood tests, urine test, hair tests, saliva tests, brain wave tests and eye tests, all claiming to be able to find the specific cause for a child’s autism. And they had specific treatments for each of those causes. Sure, some of them were contradictory, but nobody seemed to mind that. What really caught my interest was the proposition that thimerosal, the mercury-based preservative in vaccines, caused autism and chelation therapy could cure it. Advocates of this idea spoke authoritatively, with impressive lists of references and well-designed PowerPoint slides. I was intrigued even though the children I had seen with mercury poisoning did not behave like my autistic son and the recommended dosage for the chelating agents made no sense to me.
My next step toward the “Dark Side” was to write a review paper on mercury toxicity and its treatment that might improve what the chelation advocates were doing. Leading proponents were recommending that the chelating agents be given every three hours around the clock for up to four weeks, an obvious source of stress for already overstressed parents. In addition, many of these chelation “experts” predicted dire consequences if a dose is missed or even given an hour late. My paper simply outlined the then-current information about mercury poisoning and chelation therapy for mercury, using articles from peer-reviewed journals. Among other things, it debunked the dosing ideas I had encountered at the conference.
Before long, I was invited to join a conference to set up a “protocol” for using chelation in the treatment of autism. I attended and, for the first time, got to see many of the leading lights in “non-conventional” autism treatment outside of the conference hall. Most of these people appeared to hold sincere beliefs but based their assessment of their therapeutic efforts on anecdotes, surveys, and simplistic studies. I thought they would welcome a more rigorous scientific investigation of their methods and results. After the conference, I was asked to compile a “consensus report.” I readily agreed, thinking that my editing could temper the unscientific thinking of the rest of the group. However, my editorial control turned out to be nil. The final report included large tracts of material that were the pet beliefs of the senior members of the organization. Worse yet, even though I disagreed with significant portions of the report, my name was listed as sole author! I have been able to get my name removed from the "official" document, but Internet copies of the original abound.
I was subsequently invited to speak at conferences about chelation and autism and went, with an increasingly heavy heart, until I finally could do it no more. Getting to know the big names in “alternative” autism therapy had exposed me to some ugly truths. What finally changed by feeling, however, was further observation of my children.
After years of “supplements,” restrictive diets and “unconventional” therapies (too many to list), our boys were improved, but were a long way from being cured. We were forced to carry their special foods with us whenever we left the house, lest a molecule of gluten or casein catapult them back to where we had begun. We were nearly broke, despite both of us having well-paying jobs, and we were on the verge of exhaustion. The beginning of the end was when my wife, suspecting that some of the “supplements” we were giving our older son weren’t having any effect, stopped them all—without telling me. I saw no difference, even after two months (when she finally told me). We had been chasing our tails, increasing this and decreasing that in response to every change in his behavior—and all the while his ups and downs had just been random fluctuation. My eyes began to open.
The final step in my awakening came during a Disneyland vacation. My younger son was still on a gluten- and casein-free diet, which we both swore had been a significant factor in his improvement. We had lugged at least 40 pounds of special food on the plane with us. In an unwatched moment, he snatched a waffle and ate it. We watched with horror and awaited the dramatic deterioration of his condition that the “experts” told us would inevitably occur. The results were astounding—absolutely nothing happened. I began to suspect that I had been very foolish.
In the following months, we stopped every treatment except speech and occupational therapy for both boys. They did not deteriorate and, in fact, continued to improve at the same rate as before—or faster. Our bank balance improved, and the circles under our eyes started to fade. And quite frankly, I began to get mad at myself for being so gullible and for misleading other parents of autistic children.
Looking back on my experiences with "alternate" autism therapies, they seem almost unreal, like Alice's adventures in Wonderland. Utter nonsense treated like scientific data, people nodding in sage agreement with blatant contradictions, and theories made out of thin air and unrelated facts—and all of it happening happening right here and now, not in some book. Real people are being deceived and hurt, and there won't be a happy ending unless enough of us get together and write one.
My personal journey through the looking glass has ended. I stepped into “alternative” medicine up to my neck and waded out again, poorer but wiser. I now realize that the thing the “alternative” practitioners are really selling is hope—usually false hope—and hope is a very seductive thing to those who have lost it. It is really not surprising that people will buy it even when their better judgment tells them not to do so.
I suspect that the majority of the people who promote “unconventional” or “alternative” treatments for autism truly believe in what they sell. They deserve pity rather than scorn. Most of them will never realize what a disservice they provide to the very people they are trying to help. It is not my intent to make them “see the light.” It is the autistic children (and adults), their parents, relatives and friends that I am trying to reach with this Web site, in the hope that they won’t have to go through what my family has experienced. It is to them that I dedicate my efforts.
-------
General Information About Epilepsy/Seizures and Autism
Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body (1). Sometimes these seizures are noticeable, (ie. associated with convulsions); but, for many, they are small, subclinical seizures, and are typically not detected by simple observation. Some possible signs of subclinical activity include the following: exhibiting behaviour problems, such as aggression, self-injury, and severe tantrums; making little or no academic gains after doing well during childhood and pre-teen years; and/or losing some behavioural and/or cognitive gains (4).
People with autism are at a higher risk for seizures if they have certain specific neurologic conditions, such as tuberous sclerosis, neurofibromatosis or untreated phenylketonuria. As well, infantile spasms (sudden generalized muscle contractions, usually beginning between ages 3 and 8 months) do occur in association with autism. Other forms of epilepsy, such as complex partial epilepsy, generalized tonic-clonic epilepsy and absence seizures, may also occur in children with autism. Usually, the seizures can be controlled by anti-convulsants; thus, seizures may decrease or diminish (4). In autistic children, an increase in epilepsy is seen with increasing age, and at the age of twenty about one-fourth to one-third of patients show epilepsy changes (3). Also, it has been shown that, when children with autism are put on a specific diet by their doctor, there is a decrease in epileptic seizures followed by a reduction of medication, but there is also a disastrous relapse when the diet is broken (3).