With all the nuttiness coming out of Tom Cruise in the name of Scientology, it's often forgotten that there are a lot of other Scientologists out there in Hollywood. One of the other most prominent ones is John Travolta. Compared to Tom Cruise, John Travolta seems, superficially at least, the height of reason. Certainly he's a lot less obnoxious about his religion than Cruise is, and he always seems like a likable guy whenever he shows up on the talk show circuit. And, heck, anyone who can earn a commercial pilot's license and fly a 707 around the country has to have something upstairs. Piloting such a plane requires a fair degree of skill and intelligence.
Too bad he can't apply such intelligence in other areas of his life:
On Friday, April 7th, Hollywood, Interrupted was treated to the Los Angeles premiere of "Normal People Scare Me" - a feature-length documentary about autism, co-directed by the high functioning autistic teenager Taylor Cross and his mother, Keri Bowers. The event was sponsored by an organization called Cure Autism Now (CAN) and the new magazine, The Autism Perspective (TAP).This enlightening film was produced by b-movie actor/director/producer and former special education teacher, Joey Travolta. Joey's brother and sister-in-law, "Battlefield Earth" co-stars John Travolta and his wife Kelly Preston, were not present. Too bad...
...Had John and Kelly been at the screening, they might have a better understanding of the disorder reportedly affecting their 14 year-old son, Jett. Sadly, the Scientology couple cannot even publicly admit that their son is afflicted with a neurological disorder, lest - according to the incontrovertible doctrine of Scientology founder L Ron Hubbard - he be labeled a "degraded being" that brought his affliction onto himself. Instead, the Travoltas have long blamed their son's disability on Kawasaki Syndrome-related "environmental toxins," specifically carpet cleaning chemicals.
Uh-oh. If "environmental toxins" are blamed for a condition, can loads of quackery, such as chelation therapy or colon cleanses, be far behind, in order to "purge" the toxins? Also, Kawasaki Syndrome is a rare autoimmune condition for which neurological conditions such as autism are not recognized as sequelae. In fact, its symptomatology doesn't resemble autism or ASDs at all.
Best quote:
The Hollywood actor interviewed describes having autism as "like being trapped within yourself, and having difficulty letting normal people know who you really are." Now, imagine being trapped inside a mind-control cult that prohibits you from availing your child to the treatment available. No wonder Scientology has long been plagued by suicides, and wrongful deaths.
It's true that the source making these claims about Travolta and his son seems a bit gossipy, but Mark Ebner, the writer who made the claim has a record of investigating Scientology before. It wouldn't surprise me if this story is true, although I'd like more verification. If it is true, however, it's just one more instance of the harm that Scientology's unrelenting hostility to psychiatry and its misguided belief that all mental illness is due to entrapped aliens living in people's brains that must be purged can do. It is these beliefs that lead to denying when one's child might be autistic and to quackery such as Narconon.
For all his intelligence that allows him to master flying airplanes, even one as large as a 707, John Travolta's intelligence does not extent to critical thinking about harmful consequences of letting Scientology dictate one's views on mental health.
(Hat tip to Kev and my sister.)
You should really warn people about the extremely disturbing images on that page if you link to it.
L Ron Hubbard was such a classic paranoid with dilusions of granduer. Such people do not like the doctors who diagnose them. On the end of the extreme, Dr. Bradstreet recomends exorcism for autism.
This is a little off-topic, I know, but am I correct in my understanding that autism is a disorder for which the diagnosis relies entirely on identification of symptoms? In other words, is there any analytical test that can diagnose autism? It seems a little like irritable bowel syndrome, from which my wife may (or may not) suffer: a collection of symtoms given a name, but with no real understanding of an underlying cause.
Mark, there is a growing understanding of the cause of autism, which has a genetic component (though exactly which genes are involved is yet unknown), and it's known that associated with other conditions (the fragile X syndrome, Angelman's syndrome, tuberous sclerosis, and congenital rubella).
Mark, Many people with autism symptoms are subsequently diagnosed with fragile X syndrome (Fx). I'm not sure of the percentages but numerous Fx advocacy groups (and NIH) use the language that Fx is a leading identifiable cause of autism. Fx is a genetic disease caused by silencing of the fragile X gene (FMR1). As such, there is a genetic test for Fx. I'm not sure how this changes the autism diagnosis in these Fx patients, however, NIH has deemed the association substantial enough to put out a long standing request for application for grants studying Fx and autism and looking at shared mechanisms.
The Cult of $cientology is inherently evil, and no evil that it perpetrates surprises me in the slightest. They use brain washing techniques to ensnare unsuspecting people who are suffering from problems.
Here is my test for any belief system: if it results in an objective benefit, it is good. If it results in objective harm, it is bad. If it does neither, it is useless. By this standard, I think scientology is bad. Most other, more socially-acceptable religions are somewhere between useless and good, although it is clear that in some cases, even the socially-acceptable religions are bad.
I always seem to find references to autistic boys or men (or boys with Asperger's Syndrome). Is it much more common in men than women?
"Objective benefit"? "Objective harm"? I don't see how any standard of defining benefits and harms can be anything other than subjective.
Even the idea that dying is bad for you, which seems as close to objective as you can get, is contested in some quarters.
So the idea that people with autism spectrum conditions are "sick" and need to be "cured" is even more subjective, which IMO makes Cure Autism Now nearly as scary as Scientology itself. (Even leaving aside the mercury quackery - I can't find a clear statement of CAN's position on it on their website.)
Normal people scare me *especially* when they're trying to define my personality as a "disorder" or a "disability" which they want to "cure" me of. Altering my personality against my will - I consider that harmful. Is that "objective"?
Maria, going on the information given by Kristjan and Theodore, I googled fragile X and found some information that might apply to your question. It appears that since autism and fragile X are associated in some way, and since women have two Xs, the effects of fragile X, at least, are reduced in females as compared to males. Also, at least for fragile X, men are diagnosed as having it at about a 50% higher rate than women.
There is a 4:1 ratio of boys to girls in autism. The exact reasons for this gender bias are not known. Only 2.5-6% of boys with autism are also diagnosed with Fragile X, and only 15-33% of boys with Fragile X are also diagnosed with autism. (Source: http://www.fragilex.org/html/autism.htm )
Chris, objective benefit=hungry people get fed. Objective harm=adherents commit suicide. I have no interest whatsoever in whether a belief makes people feel good about themselves or fear death less. That is subjective. An objective benefit is, by definition, not subjective.
The male-female ratio in Denmark is 3.5:1
"There is a 4:1 ratio of boys to girls in autism."
How do the Thimerisol whacknuts deal with that stat?
Hmmm, as far as I know, boys and girls are given vaccines in roughly equal numbers.
Testerone. That's why they suggest chemical castration. Sadly, I am not even remotely kidding.
Oh, Kristjan, that's right, the Geiers...
God I can't stand crazy people.
Exactly. Not only do the Geiers propose that testosterone makes one more susceptible to the toxic effects of mercury as manifested by autism (based mainly on a very old experiment in rats) but that testosterone forms "sheets" that somehow bind up mercury and prevent it from being removed from the body by chelation (based on a 1968 X-ray crystallographic study of a complex of testosterone with mercuric chloride in which the crystals were made by mixing a 1:1 molar ratio in hot benzene--hardly physiologic conditions). That's where their idea that lowering testosterone with chemical castration using powerful drugs like Lupron will somehow "cure" or greatly help autism.
I am not autistic, but my daughter is. She'll be nine in May. She has no spoken language, cannot sign, shreds PECS icons. She cannot count to two. She is not toilet-trained. I doubt she'd be able to find her way home should she get out of the house unsupervised. I know she has no inkling of how to cross a street safely.
The web is replete with high-functioning autistics and parents of the same who write about their experiences. They have the view that their lives mirror the experiences of all autistics and their families. Autism is a spectrum. A person missing a digit and a person who's lost all four limbs are both amputees. One might allow that the person with no arms and legs needs more help than the person missing their pinky. Yet, many of the high-functioning bloggers would argue, to continue the analogy, againt prostheses for the quadruple amputee. I'm not even sure if they would even approve of a wheelchair. They are paranoid that a cure or even something which can mitigate the condition will be forced upon them.
Is my life difficult? No, my daughter is making great strides. She has invented her own commincatio method in which she stands by something she wants and claps. If shw wants a drink she claps next to the refrigerator -- we need to keep it locked lest we she take everythig out of it. If she wants a video she claps by the tv. If she wants a snack she claps by the cupboard. Now this may not seem much, but its a great accomnplishment for her. Her disposition is cheerful. It wasn't always. We, my wife and I were bitten, bruised, lacerated and I don't know what almost daily for years. But now that is thank God that is rare.
She greets me with a smile when I come home, and has even begun to initiate play. It's a simple game where she stands over me a falls forward, and I catch her and stand her upright, or she leans over to indicate she wants me to turn her upside down, and cause her to somersault.
Most of her improvement has come with her maturing. She does take medicine and the thought of tardive dyskinesia haunts us. So we challenge the medicines periodically in the hope of getting her off. One obstacle is that she will not go to sleep unless its induced. Also, because of the ethical dilemma of testing medications on children, psychhiatrists rely on their own experiences when prescribing medicines. Their advice is often cotradictory.
Yet, we also know that there's a good chance she'll never be able to live on her own. She may need to be institututionalized. We hope for a cure. At the risk of seeming hopelessly ignorant, we pray every night for her as well.
So next time one reads the complaints over the search for a cure for autism, keep in mind there are autistics who live in a completly different world from those who post to blogs such as this. People who need the help that many would so selfishly deny them.
To clarify, I'm not talking about alternative medicines. We tried some of that to no avail, foolishly ignoring as Quackwatch says "the plural of anecdote is not data." ... Trying to separate the absurd from the grossly absurd and lying to ourselves ourselves there is a difference.
Dear Traveler:
No one is opposed to actual treatment and a real cure. What is opposed is the use of children as lab rats for untested "cures" which have no sientific foundation. If science can somehow come up with a way to cure austim, I feel that it might b the beginning of cures for a whole host of diseases.
I would also caution you to not automatically think that there are only people who live with high funtioning autistics on the net. There are those that may have children who are institutionalized.
You should also begin to think about group homes. I have seen some that are wonderful.
Dear TheProbe. One would think no one would be against a cure for autism, but one would think otherwise reading some of the posts from the neurodiversity advocates. There may be those who have children who have been institutionalized, but they rarely if ever post.
I thought I made it clear I was talking about a real breakthrough vs. quackery. Is anything helpful to come from epigenetics. I read http://today.slac.stanford.edu/a/2006/04-12.htm about a possible breakthrough in gene therapy and wonder if perhaps...
Just for the record. I'm not a scientist, though I work daily with those who are.
Traveller,
You have some very valid points, and it sounds like you have a pretty good head on your shoulders about your family life. Thank you for sharing about your successful communication method as well.
I absolutely endorse and read as much of the real research as I can. Cure vs. Don't Cure is really irrelevant at this point. Real understanding is needed first, and it appears a ways off for now. Given that understanding is step 1, I support real research, if that leads to a "cure" or other "treatments" that will be a new decision point with new information. With all research - Ethics first.
With regards to any treatment "for autism itself", not insomnia or some other comorbidity, there is absolutely nothing scientifically established. Wouldn't it be nice if all money and efforts being expended by society for quack treatments was going toward funding group homes that provide real appropriate assistance, opportunity, happiness, etc.? Yes, that's idealistic, but it has to start somewhere.
The more society at large buys into "epidemic" hype, and "devastation in general" hysteria the more urgently the quacks are fed. Result? Richer quacks.
Traveller,
I'm afraid you are making assumptions about the 'type' of autism that several of the bloggers who comment here and are autistic themselves were (or indeed still are) diagnosed with.
Whilst its true that several are diagnosed with AS, its also true that several were diagnosed as 'low functioning' as children - just like my child, and yours - and as they grew and matured they gradually lost that diagnosis, although some still have it.
I've never understood why people who claim to want to help autistics can only come up with two alternatives: a cure for autism, or institutionalization for autistics who are not cured (groups homes are often indistinguishable from institutions). That is neither an ethical nor a scientific position, and it is one which is harmful to all autistic people.
For how Autism Traveller's position looks from the receiving end, see http://www.autistics.org/library/time.html
No autistic person "needs" institutionalization, though thanks to the "cure or institutions" mentality, many of us have lost our freedom in one way or another. I have a lot of experience with the assumption that people like me, who are autistic and have certain behaviours and lack certain skills, should not be at large.
For how autistics experience the "cure or institutions" mentality and live its consequences, see also http://www.gettingthetruthout.org/ and do not stop until the end.
I sent a previous message, which had two links in it (ah, but I had a link with my name...). This message disappeared. Here's a reconstruction of the disappeared message, divided in two.
I have never understood why people who claim to want to help autistics allow for only two possibilities: the autistic is cured (or otherwise trained to pass for normal), or the autistic is institutionalized (and group homes are often indistinguishable from institutions). This is neither a scientific nor an ethical position.
The "cure or institutions" mentality has resulted in many of us losing our freedom in one way or another. I certainly have a lot of experience with the assumption that, because I am autistic and have certain behaviours and lack certain basic skills, I should not be at large.
For how Autism Traveler's views look from the receiving end, see http://www.autistics.org/library/time.html
Second piece:
For some of the consequences of "cure or institutions" as they are experienced by autistics, read all the way through http://www.gettingthetruthout.org/
Key, one of the problems is that terms such as low-functioning are often used subjectively. If there are low-functioning autistics posting here then I fear the term has lost all meaning. Even if they were low-functioning as a children, their journeys to the high-functioning side are anecdotal. It is not a population study.
I have excellent access to journals. A common theme in many studies following up earlier ones is that while all children improved the children least afflicted improved the
most, the children most afflicted the least.
I don't know about your child, but far too often parents assign a low-functioning label to a child who is not. I hesitate to use it with mine. Even at her worst she was never self-injurious execpt for rare occaisions when she dug her nails into her palms until her hands bled.
Every day she does a bit better. She's doing well with her fork and spoon. Her receptive language is growing rapidly. She learns best things which are done a few times a day everyday.
We get a great deal of help from our church which has programs for special needs children very much like those in her secular school program. On Saturdays, I volunteer for a community program the church runs in which NT and autistic children play soccer. I turn my daughter over to her coaches, and I and a middle-schooler work with young highly-afflicted child. This year the program has been rained out all but the first weekend.
For us, building a relationship with God has meant all the difference. Where we onced despaired, we are now full of hope.
Dear Traveller,
All I can say is best regards to you and your daughter.
Heady debate is an entertaining diversion but I can tell that you are there in the day to day doing your best for your child and your family; as does any parent of any child. Until any of us stand in your specific shoes it is, even with the best intention...speculative.
With respect and, hopefully, understanding,
Regan
Mark Paris: I don't think you got my point. You're taking one particular set of axioms (or, if you prefer, definitions) and labeling them "objective" for no apparent reason. It's objectively (empirically) true that feeding the hungry will (all other things being equal) result in fewer of them starving to death. It's a subjective *judgment* that this is a beneficial outcome. (And yes, there really have been belief systems that claimed that death was good for you!) It's sometimes necessary to have assumptions, but it's important to not forget that they *are* assumptions, and different assumptions lead to different conclusions.
The error of mistaking your own subjective beliefs, opinions or judgments for objective universal truths is common enough that it ought to have a name, but if so, I can't think of it at the moment.
Autism Traveler: Of course I don't intend to deny any useful treatment to your daughter. I hope she continues to learn better ways to relate to, and communicate with, people who are different from her (which is most of them). I just want to emphasize the importance of focusing on ways to improve the lives of people with autism, and not trying to turn them into different people (without autism).
I guess what I'm saying is, don't aim for living a normal life. Aim for living a good and happy life. If it's better for you to do that in a non-normal way, that's fine. (This is, of course, my subjective judgment.)
Formally, I haven't been diagnosed with anything (except depression a few years back). I just look at lists of Asperger's characteristics and say "yep, that's me". (I realize this is not a rigorous diagnosis!) But I consider those characteristics part of my personality and identity, not "disorders" that need to be "cured". (See how the language is slanted toward a certain conclusion, to the extent of discouraging critical examination of the underlying assumptions - that there's something not just different, but *wrong* about people with autism, and they *should* be cured because everyone would be better off?)
I'm not opposed to the existence of a "cure", but to the prospect of having it imposed on people who - because they aren't "normal" - could be characterized as unable to decide for themselves whether or not they want it. (Or should I say "ourselves" and "we"?) Studying the history of the field and some of the rhetoric that's out there now about autism, I don't think this is a particularly unlikely prospect.
This problem gets into some very murky philosophical issues of mind, brain, identity, consent, and ethics... in some ways, I think a "cure" would be equivalent to killing the person that existed before in order to create a new person inhabiting the same body. Who should be allowed to judge that one life is more valuable than the other, and on what grounds?
the scientologists' views on adhd are just as bad, if not worse. they call us 'drug addicts' and imply that we're all part of some evil cabal headed by shire and novartis to poison children, and they've been doing their damndest to get our meds pulled from the shelves.
so don't worry, even if we were to make leaps and bounds in autism treatment tomorrow, even if we were to pinpoint the exact neurochemical pathways involved, as we do with adhd, it wouldn't silence these nutcases. scientology refuses to accept virtually everything that has been discovered regarding neurology and neuropharmacology over the past century, and they're not going to change. if anything, it's only going to get worse as new discoveries and an ever enlarging pool of knowledge continues to increase the gap between intellectuals and know-nothings.
I wonder if aspies or other high functioning autistics would be any good at working with severly autistic kids? Is it possible that they might be better able to communicate or understand them? Just a thought.
There are bunches of pilots in my family. They've always said that flying a big plane is no harder than flying a small plane. I have a few hours in planes myself - it's not really an intellectual challenge. I think good piloting is more about developing a good feel and being able to keep your head in an emergency. And if you have enough money to buy your own plane, you don't even have to be a good pilot to fly it, just a pilot.