Autism Vox

May 9th, 2008

Nothing Like a Ferris Wheel

Despite the heavy rain and wind outside—serious weather for the serious tone of today’s posts—summer is coming and with it surf, sand, sun, ocean swimming, and rides (!!!!!). The ferris wheel is Charlie long-time favorite: Oobject lists 10 unboring ferris wheels and something tells me that Charlie would enjoy them all, from homemade to this “eye-full.”

(Me, I prefer just to admire them from terra firma, and take photos.)

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By Kristina Chew, PhD -- 0 comments

May 9th, 2008

Where Are All the Autistic Adults?

The British government has announced that it is planning to calculate the number of autistic adults in England. The £500,000 project is the first to specifically study the number of adults who have autism, the BBC reports.

It will be interesting to see how the study is conducted: The tools for diagnosing autism in adults are neither as valid nor as reliable as those used for children. And:

The group has been hard to measure partly because so many people have grown up before improvements in recognition and diagnosis; and some may have been labelled inappropriately as having mental health problems or learning difficulties or not acknowledged at all.

Academics at the University of Leicester will lead the research which will include a study of a sample of the adult population - a sort of mini census.

Their challenge will be to find some way of taking account of those adults who have not been diagnosed to achieve as much accuracy as possible.

Once the work is complete, the government will use the statistics to craft the first national strategy for adults with autism to be published next year.

Already dwarfing the basic question of “how many autistic adults are there” is another concern: Is the prevalence rate of autism in adults the same as it is in children (1 in 150)?

If it is not the same—as David Kirby argues over at Age of Autism by citing a 2004 study in Scotland which found only 645 adults with autism, or, that is, adults who were actually diagnosed with autism—-this would mean that there are many, many more autistic individuals today than in the past; such a finding is taken as proof of a so-called “autism epidemic.”

If the prevalence rate is the same, this would suggest that not only has autism always existed, but that the reason the autism rate has risen so dramatically is recent years is because we have a much improved and much more precise understanding of what autism is and of how to identify it in children. And—while the occasional person still says “I’m sorry” to me when I mention that Charlie is autistic—the stigma of having an autistic child has lessened significantly, and people are much more willing to talk about autism publicly.

Kirby affects puzzlement at why more autistic adults don’t come forward and be counted:

“With all of the media attention on autism these days, one would think that adults with the disorder would come forward in search of social services, adult education, job training programs, support groups, and other ways that would make their numbers be counted.”

Kirby might think this, but if he had studied what the options for job training, education, and social services are for autistic adults with the same intense focus that he applies when discussing environmental causes of autism, he would note that, in most cases, options for all of the above are not suitable, not even good and not even available (as in, they don’t exist). He would note the many reports of parents whose adult autistic children sit at home with no job and nowhere to go after turning 21. He would note that the media attention on autism today is primarily focused on autistic children, and especially those who are young and cute.

There is, of course, nothing wrong with being young and cute (my own son was indeed so as a toddler and preschooler, once upon a time—-ok, he’s still a quite good looker, I think). But it’s a different matter to get experienced and motivated teachers and aides for an adolescent with the beginnings of a mustache and a muscular build (no more carrying); what about for a potentially 6 foot tall minimally verbal adult? And, much of what the media has to say about autism is not exactly upbeat: Autism is lifelong, makes life difficult and parent “victims“; autism is like a thief in the night that took away a beautiful child and left…..autism.

So, maybe the question is ask is not only where might be all those adults with autism but where are the services and supports for them?

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By Kristina Chew, PhD -- 10 comments

May 9th, 2008

The Autism Treatment Subculture

That’s how Dr. Steven Novella refers to various alternative medical practices used by parents on their autistic children in the May 8th Neurologica blog. Among those practices is chelation, in which medications are administered to remove “heavy metals” from a person’s body and thereby to “detoxify” his or her system. Dr. Novella discusses the recent dropping of charges against Dr. Roy Kerry, who was accused of causing the death of 5-year-old Abubakar Tariq Nadama. In 2005 Nadama went into cardiac arrest after undergoing chelation therapy with Dr. Kerry. Dr. Novella not only points out the dangers of chelation, but also considers why parents—desperate to help a child—-might choose such untested procedures and invest both dollars and hope in the “autism treatment subculture.”

Dr. Novella writes that the death of Nadama is a case of a doctor acting “out of his specialized area of training, something which is specifically noted to be unethical behavior in most state statutes dealing with the ethical guidelines for physicians [my emphasis].” Dr. Kerry is an ENT surgeon (ear, nose, and throat specialist). Dr. Novella continues:

Then - practicing a specialty for which he was not trained - [Dr. Kerry] decided to give a treatment [i.e., chelation] that was not indicated based upon a theory that is rejected by the consensus of opinion of actual experts in the relevant field. Such behavior can only be described as overwhelming (and deadly) hubris. Beware someone who presumes to know better than the experts in another legitimate field of study.

Chelation itself is based on a hypothetical theory about what causes autism, the notion that autism can be linked to vaccines or something in vaccines, such as mercury. It is not an approved treatment for autism and is, again, one of many alternative biomedical treatments that have been regularly referred to as “successful,” along with (to name a few), hyperbaric oxygen therapy, sauna therapy, holding therapy, the lupron protocol, and many others (such as this).

Hence the emergence of an “autism treatment subculture,” as Dr. Novella writes:

There is now a subculture of those who believe that they know better than the consensus of scientific medical opinion. This subculture includes private citizens who just want answers and either don’t trust the establishment or don’t like the answers they are giving, it includes lawyers who are happy to make money off the whole thing, journalists who are happy to make a career out of hysterically misinforming the public, and most alarmingly it includes doctors who are willing to practice unscientific and unethical medicine (for whatever reason).

Further, an infrastructure has arisen to support the whole enterprise. It’s like a separate health care system existing in fantasy land. Of significance to this case, there are labs that are happy to make money by providing worthless clinical tests to support the quack notion of the month. They either use tests that have not been validated, or that are virtually designed to provide false positive results.

Dr. Kerry, then, is “not an isolated case” and is rather “representative of a systemic problem in our society,” the public’s increasing adherence to a “treatment subculture” whose players may not only have questionable credentials, but who also may engaged in questionable tactics to “prove” their theories about autism.

Two individuals who are part of the “subculture” that Dr. Novella describes, and who are rather well-known (indeed, a bit notorious) in the annals of vaccine-injury litigation, are Dr. Mark Geier and David Geier. Over at Neurodiversity, Kathleen Seidel has written extensively and cogently about them and the “autism treatment subculture”; she has specifically discussed the dangerous effects of the Geiers’ “Lupron protocol” treatment on autistic children.

At the end of March, Seidel was issued a subpoena commanding her “to appear for deposition and document production in Rev. Lisa Sykes and Seth Sykes’ $20,000,000 personal injury lawsuit, Sykes v. Bayer (Case No. 3:07-CV-660, Eastern District of Virginia, Richmond Division).” The subpoena was issued by lawyer Clifford Shoemaker and was quashed in April. In her latest post, Seidel describes the response of Shoemaker “to the court’s April 21 Order to Show Cause regarding the omnivorous subpoena issued against [her] in the case Sykes v. Bayer.” Shoemaker, that is, has now filed a response to the quashing of the subpoena he issued against Seidel. According to the response, Seidel is said to

“‘…head a group’ that seeks to personally and professionally discredit Rev. and Mr. Sykes and ‘witnesses who have given support to the family’s positions’ — presumably Dr. Mark Geier and David Geier.”

Seidel’s public writing about autism and vaccines is alleged to be a “form of harassment and interference with business relations” and she is said to have received “direct or indirect assistance for ‘efforts to damage [the Sykes and their witnesses] personally for their participation in this lawsuit’ from Bayer Corporation.”

To set these accusations into context, Seidel writes about a lawsuit that was initiated two and a half years ago in noting that “this is not the first time that citizens [like her] participating in public debate about scientific matters have been accused of tortious conduct for persuasively criticizing Dr. and Mr. Geier.” She carefully details the circuitous narrative of the older lawsuit in which

“Dr. and Mr. Geier alleged that they had been defamed and otherwise harmed by the four co-authors and publisher of a medical research review that questioned the reliability of their epidemiological analyses.”

This lawsuit has been dismissed, as Seidel writes in Debate or Defamation?. But Seidel picks up on a pattern of responses among some proponents of alternative medical treatments for autism: Criticize their work and claims of “defamation” will be brought against you, while it is precisely “free and open debate” that is key to advances in science. (And here I thought we were talking about theories of autism causation and treatment and whether or not there is scientific evidence for them…….not whether or not anyone felt that their character was “damaged” by someone criticizing their work. )

One of Dr Novella’s observations about Dr. Kerry on the Neurologica blog is relevant in view of the legal back and forth that Seidel has been made part of, and that seems to be increasingly used—consider the case of Hannah Poling—in efforts to prove theories of autism causation. Writes Dr. Novella:

“Conspiracy theories are used to deflect any criticism, any lack of confirming evidence, or the presence of any disconfirming evidence.”

Instead of simply standing up for the science behind their “Lupron protocol,” the Geiers filed a lawsuit. Instead of referring to studies and research about vaccines and autism, Shoemaker accuses Seidel of “harassment” and “interference with business relations.” Instead of strategizing how to provide for autistic individuals for their whole lives with jobs, housing, and services, much energy, dollars, and (digital) ink is devoted to proving or disproving theories about what might or might not cause autism.

In such an atmosphere, I guess we should not be surprised that treatments such as chelation are prescribed even though large scientific studies have not found them to be effective. In the name of (as Dr. Novella writes) “‘alternative’ ideologies and clever marketing under the banner of ‘health care freedom’” have we become too willing to be eternally “open-minded” about what to do to treat disease and, especially, to “treat” autistic children? Is it possible that there isn’t some magic panacea out there that will cure all of our children’s needs? Is it possible that autism is life-long and that rather than chasing after not only causes, treatments, and lawsuits, it might be best to help the individuals in front of us, every day?

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By Kristina Chew, PhD -- 6 comments

May 8th, 2008

You Can Never Be Too Careful

School bus driver Danny Floyd of Moorpark (CA) was arrested on May 7th on the suspicion of molesting a 14-year-old autistic boy, the Ventura County Star reports. Floyd and the boy were paired through the Big Brothers Big Sisters of America and have known each other since November; the molestation is alleged to have occurred between March 1 and May 5. Bail for Floyd has been set for $250,000.

As the mother of a minimally verbal autistic boy who has just entered puberty…………I can’t be too careful.

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By Kristina Chew, PhD -- 5 comments

May 8th, 2008

Everything Causes Autism (Or So it Seems)

“In psychology, I’m starting to get the weary feeling that everything gives you mental illness,” quips Williams Saletan in the May 7th Slate on Human Nature. Saletan references the recent study which found that parents who have psychiatric disorders are doubly at risk to have an autistic child (while also citing another study according to which “adoption can double a child’s risk of disruptive behavior disorder“). Have to say, I’m starting to feel that everything can give a person autism.

What hasn’t been cited as a cause of autism?

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By Kristina Chew, PhD -- 41 comments

May 8th, 2008

Antipsychotics in Kids, Weight Gain, and Parental Worries

The decision to put an autistic child on medication is never easy for a parent to think about. When the medications in question are antipsychotics (like Risperdal) and antidepressants (like Zoloft), and when the child is disabled and has little or no language to explain how he feels while on the meds, a parent has to proceed with caution. Weight gain is a frequently reported side effect of taking Risperdal and a new study on the use of antipsychotic medications in children indicates that taking these drugs results in an almost immediate increases in body mass index (BMI) and triglyceride levels, as reported in the May 7th WedMD. John Newcomer, MD, the Washington University School of Medicine in St. Louis, presented preliminary research from a study of children taking Zyprexa, Risperdal, or Abilify at the annual meeting of the American Psychiatric Association:

So far, 50 children ages 7 to 18 have completed the 12-week study. The children suffer from a wide range of ailments, including autism and pervasive developmental disorder. They were prescribed one of three medications: Zyprexa, Risperdal, or Abilify.

“Virtually 100% of the kids exposed to the medications had some degree of increase in body fat,” Newcomer tells WebMD.

Specifically, the kids were in the 64th percentile of BMI for their age at the start of the study. By 12 weeks later, they were in the 77th percentile on the growth curve, he says. And their triglyceride levels shot up 20 points.

Preliminary results suggest Zyprexa causes the greatest changes in body fat and lipids, and Abilify the least.

Charlie started taking Zoloft for anxiety a few years ago, after we noted to his pediatric neurologist that he sometimes head-banged because he was anxious and fretful. A year later, Charlie started taking Risperdal, as his self-injurious and aggressive behaviors were increasing, and to the point that he was becoming dangerous to others, and to himself. Almost immediately after starting the Risperdal, Charlie’s appetite increased significantly and he gained a significant amount of weight, to the point that he was not able to swim as well and seemed sometimes to be physically uncomfortable from being heavier.

We went out of our way to make sure that Charlie got some physical exercise every day, such as swimming and biking, and made sure there were lots of fruits and vegetables around the house (Charlie developed his love of watermelon and frozen edamame around this time). We have been able to keep Charlie on low doses of both medications thanks to finding him a good school program, which has taught him to deal with his anxiety and worries in other ways besides self-aggression. An attempt to take Charlie off Zoloft resulted in an almost immediate increase in aggression and anxiety.

There really is no magic pill and things still happen out of the blue. For instance, yesterday morning, Jim was getting Charlie ready to catch the bus; Jim said something like “let’s put on this cool new sweatshirt” and it was bang bang bang, and I was running to get ice out of the freezer. Jim got Charlie down the stairs crying very loudly; I held the ice on his forehead and he knocked it out of my hand. We stowed the new, lightweight hooded sweatshirt from my mom in Charlie’s backpack and the bus pulled up.

“Transitioning out of the winter coat,” I said to the bus driver, who nodded (she’s noted that, despite the rising temperatures, Charlie has been insistent on wearing his heavy blue fleece coat with the hood pulled all the way over his head.)

When I got to work, I had an email from Charlie’s teacher: Red mark, crying crying. I wrote back about what had happened and another email came around 11.30: Rough day, Charlie would not seem to get something out of his mind.

As I drove home, I remembered: The night before, I had washed Charlie’s blue fleece coat. I had hung it over a kitchen chair to finish drying, which meant that the coat was not in its usual (reassuring) spot in the living room. Which meant that Charlie concluded, he no longer had his coat. I called Jim who immediately said, “Wow, I felt odd when I didn’t see the coat this morning!”

Charlie came off the bus wearing his new, lighter blue sweatshirt. I had placed his fleece coat on a chair and he went over to it and dropped it on the floor, just so. He quietly agreed to put on the new sweatshirt when we went for a walk. It has a kangaroo style pocket in the front and he walked with both hands in it, pulling down the sweatshirt so that the hood was right over his head, and his smiling face.

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By Kristina Chew, PhD -- 8 comments

May 7th, 2008

The Gluten Free Frenzy

The price of rice has skyrocketed, due to fears that an international shortage will affect the US. Given what the Chicago Tribune calls a “gluten-free diet frenzy—-and families of autistic children are “among the strongest advocates of gluten-free”—I guess this could be a bit of a problem…..

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By Kristina Chew, PhD -- 16 comments

May 7th, 2008

Supported Living Facility in NJ?

Herb Heflich, executive of 10 NJ properties for senior citizens, has a plan to create a supported living facility for autistic adults—”a group home without the stuffiness of an institution“—in central NJ:

Designed to give adults with autism around-the-clock care — ranging from physical and occupational therapy to “vocational rehabilitation” — the two-story building proposed by CMG Chelsea would house 42 apartments within its 51,796 square feet.

The units each would include a kitchen, living room, bathroom and one or two bedrooms, according to renderings of the building. Plans also call for a shared dining area, a large kitchen, television and computer rooms, a gym, work shop and a conference room, as well as 64 parking spaces. Twenty employees are expected to be on duty during peak hours.

And Helfich has already been getting plenty of phone calls.

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By Kristina Chew, PhD -- 6 comments

May 7th, 2008

Back in the Swim

Last fall, I wrote about our difficulties getting swimtime in for Charlie at our YMCA pool in the later afternoon/early evenings, the time when he’s most ready to go. Our YMCA has three pools, two of which seem to be perpetually in use for the swim teams’ practices, adult lap swimming, or lessons. The third pool is the “family pool” and consists of a wading pool with a slide and spouting water toys, a 3-4 feet deep rectangular pool, and two water slides.

This is a fine set-up if you want to splash around, shoot baskets into the hoop at one end of the pool, wade, or do a few brief partial laps and Charlie’s always been glad to do this. Charlie is a very capable swimmer—in particular in the ocean—and there’s not too much swimming anyone can do in a 4-foot-deep pool. (Charlie does manage to turn the occasional underwater somersault, frontwards and backwards). As many readers urged, Jim and I called the YMCA management and got the same response over and over, to enroll Charlie in the special needs swimming lesson program, and to take him to a Saturday program for autistic kids.

The swimming lesson program does sound like a good idea, but what we’re looking for is just swim time for Charlie. Apparently when he’s 14 he qualifies for swimming in the adult lap swim times; one of us would have to swim with him, as Charlie often can’t resist ducking under the lane markers into another swimmer’s lane. I’ve thought about just jumping into a lane with Charlie and seeing what happens, but the thought of being asked to get out, and of having to drag out a happily swimming Charlie, have given me pause.

And then, last Friday, a solution unfolded that reminded me, sometimes you just have to stop fighting and let be.

Another professor at the college where I teach had mentioned that she’s been taking her daughters to swim in a sort of “kids’ swim team” at the college’s pool a couple of nights of week. She knows that Charlie loves swimming and kept urging me to come. I noted that Charlie might have some trouble following the coach’s directions and doing the strokes as requested, but figured that we could at least get in some good swim time. And so, after Charlie’s IEP meeting and Charlie had had his usual afterschool snack, to the pool in Jersey City we went.

Neither the coach nor my friend were there but several families—speaking several languages—were in the bleachers watching their children have swim lessons. The pool was huge, 12 feet deep in the middle, edged in fading, worn tile. I walked over to the lifeguard, who was sitting at an old plastic table; she was a student on the swim team who knew a number of my students. “Can my son just swim?” I asked. “Sure!” she said. And in jumped Charlie.

He smiled immediately and paced back and forth in water nearing his chin. I got in at the deep end, leaned forward, and moved easily through all that water. “Come on, come on!” I called to Charlie and, still smiling, he put his face i and moved through the water. He swam the other way on his back; he sunk down towards the bottom and shot back up, eyes closed, relaxed. I got out after we’d done some laps together and stood beside Jim (who was wishing he had brought his swim suit) and Charlie stayed in, swimming, somersaulting, laughing under the high ceiling, rather dimly lit.

In the town we used to live in, there was an indoor community pool and Charlie and I used to go there almost every weekday evening. Sometimes he had a private lesson; other times we went back and forth in the one lane allotted for “open swim” (which we had to share with the ladies’ water aerobics class; I spent a certain amount of time hurrying out of the pool after Charlie when he tried to grab the instructor’s tape out of the boombox). We were regulars at the indoor pool (also a little worn around the edges) and knew all the lifeguards, lap swimmers, and water aerobics class members. We were members and—especially after another trying day when Charlie’s forehead was marked with a bruise—-we both felt safe and at home there.

Tuesday night, Charlie went eagerly down the water slides at our YMCA. It’s a shiny place, with a full battalion of lifeguards wearing fanny packs with first-aid gear and bearing red flotation devices. There are storage benches packed with life vests for younger children, new swim noodles, beach balls and balls of all sizes. Charlie did a few flips in the pool and rubbed hard at his eyes from all the chlorine. He went down the slides time after time and got over-excited and started turning over on his stomach (which he knows he’s not supposed to do). It was good fun and Charlie was completely worn out after a dinner of shrimp, vegetables, and noodles and a few dashes of ketchup, and went to sleep with his right elbow tucked under his head.

But still not quite like last Friday, when Charlie was on his back, blissfully kicking his way through several feet of water—more than enough to hold him up.

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By Kristina Chew, PhD -- 14 comments

May 7th, 2008

Wanted: Powerful Science Advisor (for the next president)

An article in the May Scientific American explains why the next president needs a powerful science advisor.

If you consider the political pandering among the presidential candidates about the vaccine-autism myth—-it’s too obvious why.

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By Kristina Chew, PhD -- 3 comments