Monday, January 31, 2011

Interview: Vaccine Expert Dr. Paul Offit

Vaccine expert Dr. Paul Offit is the author of the new book Deadly Choices: How the Anti-Vaccine Movement Threatens Us All. We talked with Dr. Offit about realities of vaccine-preventable diseases, the importance of herd immunity, just how contagious measles really are, why you shouldn't have chickenpox parties, why neither he nor Jenny McCarthy are autism experts, why it is unethical to run studies featuring vaccinated versus unvaccinated children, and just how extensively the autism-vaccine hypothesis has been debunked.

[update 2/1] Dr. Offit discussed many of these same topics during his 1/31 guest spot on The Colbert Report.

Deadly Choices: How the Anti-Vaccine Movement Threatens Us All
What is your elevator pitch for parents concerned about vaccines and autism?

I think raising the concern is reasonable. Children get vaccines, and for some children, the signs and symptoms of autism may appear soon after receiving the vaccine, so asking those questions is reasonable. The good news is that the question is answerable.

We've gone through three different stages, the first being the notion raised by Andrew Wakefield -- that the combination measles, mumps rubella [MMR] vaccine caused autism. So now we have studies looking at hundreds of thousands of children who either did or did not get that vaccine, making sure those two groups were alike in other aspects, so you could isolate the effect of that one variable: receiving the vaccine. And that study's been done, redundantly and repeatedly, and it's been found that you're not at greater risk of getting or having autism if you got the vaccine. So MMR didn't cause autism.

Then we shifted to hypothesis #2, which was "does thimerosal, the ethyl-mercury preservative in vaccines, cause autism?" That was easily studied. Western Europe had taken thimerosal out of vaccines by 1991, the US started taking thimerosal out of vaccines given to young children around 1999. Seven studies looked into this and have all found the same thing, which is that vaccines with thimerosal didn't cause autism -- and also that thimerosal has been out of vaccines given to children less than six months old since early 2000, and the incidence of autism certainly hasn't declined.

And then we went to hypothesis #3, which is that children are just getting too many vaccines too soon, and that it's somehow weakening or overwhelming their immune systems. An excellent study by Michael Smith and Charles Woods was published in Pediatrics, and showed that there was no relationship between any developmental delay or autism in children who were fully vaccinated as compared to those who had chosen to significantly delay vaccines.

Everything we know about autism tells you it's not the vaccines; why are we still focusing on this?

The anti-vaccination camp frequently demands to know why a vaccinated vs. vaccinated study hasn't been done. The reply is usually that such a study would be unethical -- but it sounds like you can draw those comparisons from existing studies -- that the study's effectively already been done.

If you look at the Smith and Woods Pediatrics study, they mined data from Bill Thompson's thimerosal study at the CDC. Thompson and his colleagues went through the medical records of 1,000 children and carefully documented whether mothers had received RhoGAM that had contained thimerosal prenatally, exactly which vaccines the children were given post-natally, then they subjected the children to 42 different neurological and psychological tests -- and concluded that thimerosal wasn't associated with an adverse neurological outcome.

What Smith and Woods did is take Thompson's data, and determine which kids got which shots when. They took a group that was fully vaccinated and compared it to a group that was much less vaccinated, who only got two or three vaccines in the first couple years of life. So it wasn't a vax/unvax, but it was a vaccinated/much less vaccinated study. And there wasn't any evidence supporting an autism connection.

But you're right, [a vaccinated/unvaccinated study] is unethical. There's not an institutional review board in the world that would approve that kind of study, because we know that vaccines work, we know that if you don't give a large number of children vaccines that some of them are going to get whooping cough or chicken pox, some of them may be hospitalized or even killed by the diseases -- you can't do that kind of study.

People who believe their children's autism is vaccine-caused seem to mistake coincidence or correlation for causation. Can you give us an example of how that happens?

We're always looking for reasons why something happened. The example I use is from my wife, who is a pediatrician. She was about to vaccinate a four-month-old baby, and while she was drawing the vaccine from the syringe, the baby had a seizure -- and went onto have a permanent seizure disorder. Now, my wife hadn't given the vaccine yet. But if she had given that vaccine five minutes earlier, there would have been no amount of statistical data in the world that would have convinced that mother that the vaccine hadn't caused the baby's seizure. You can do studies that show no increased risk with vaccines and seizure disorders, but that mother might still say "well, that's true for the population but it's not true for my child."

Temporal associations are powerful, and they're hard to defeat with statistics or studies.

But I would say, and this is going to sound like a contrarian -- if my child had autism, I would be motivated to look at the data even more critically, because so much more would be at stake.

In your experience, how representative are the parents like J.B. Handley who refuse to go down the evidence path with regards to their children's autism?

I've actually come around 180 degrees from where I was five years ago. When I wrote Autism's False Prophets, I thought -- wrongly -- that most parents believed this vaccine-autism hypothesis. After the book came out, I started getting a lot of letters saying, "I don't know who you're talking about -- that's not me. Jenny McCarthy doesn't represent me."

A small group of parents represent anti-vaccination ideas. But they're very passionate, very vocal, very Internet savvy, very media-savvy. And so their voice is much louder than that of the silent majority. My email from parents is 10:1 favorable, thanking me for what I'm doing, etc. I'm encouraged -- and in the preface to the paperback edition of Autism's False Prophets, I apologized to those parents for misrepresenting them.

I think it's OK to be skeptical, and skeptical about anything you put into your child's body. But there's a difference between being skeptical and being cynical. And I think that people like Handley are cynical -- he thinks there's a big conspiracy to sell [vaccine] products and I'm part of that conspiracy. There is no convincing him. And he's wrong.

If I was the parent of a child with severe autism, I would be really angry with someone like JB Handley for presuming to represent me.

Could you discuss the concept of herd immunity, specifically what it takes to establish it and protect public health?

Herd immunity simply means that you can stop the transmission of a virus or bacteria by having a critical number of the population immunized, and that number really depends on the nature of the virus or bacteria.

For example, Polio was introduced in the United States in 1955. When we got about 70 percent of the population immunized, that effectively eliminated polio, so it couldn't spread anymore. We eliminated polio from the U.S. by 1979.

Now, measles is much different, much more contagious than polio; you need a higher percentage of the population immunized. Overall the U.S. is in the high 80/low 90 percent immunization rate for measles, but there are certain communities where it's less than that, about 75 percent, and that's not good enough. When we had a measles outbreak in 2008, higher than anything we'd seen in a decade, it was in the communities with an erosion in vaccination rates -- Southern California, Upstate New York.

You also need to remember, there are about 500,000 people in the United States who can't be vaccinated, because they're getting chemotherapy for cancer, or are on immunosuppressant therapy for transplants or other disease. There are also kids younger than six months old who can't get the flu vaccine or are inadequately immunized against whooping cough because they're just starting their series. Herd immunity protects them.

Just how contagious is measles?

It's unbelievably contagious. I'll give you an example from a study in the New England Journal of Medicine. A 17 year old unvaccinated Indiana girl goes to an orphanage in Romania as part of her church's mission. She catches measles. She then gets on a plane and comes home. She's starting to feel ill, fever, runny nose -- and she's starting to get the rash but it's mild. The next day, she goes to a church picnic with 500 people. She was there for two hours. Of the 500 people there, 465 had either been vaccinated or had developed natural immunity from having measles. Of those 465, 3 of them, 1 percent, got sick. Of the remaining 35 who had never been immunized or had natural immunity, 31 developed measles. 31 out of 35! That's almost 90 percent! The girl didn't even have to have direct contact with them -- she just had to be in their airspace during a two hour period. That is one contagious disease. And that's why you need such a high rate of immunization.

People still hold chickenpox parties, and think of chicken pox as a mild childhood disease. But measles can be serious -- Roald Dahl's daughter Olivia died from measles encephalitis, and in your book you listed some rare but fairly gnarly potential measles side effects, including necrotizing fascitis. That's flesh-eating bacteria, isn't it?

Yes.

*Shudder* Can you talk about the risks of vaccine injury versus the risks from contracting vaccine-preventable diseases?

The Vaccine Adverse Events Reporting System (VAERS) is a hypothesis-generating system, a warning system, but it offers no proof. So while it might be a temporal association, that doesn't mean it's a causal association.

When the Rotavirus vaccine was introduced in this country in 1998, it appears it could have caused intestinal blockages because there were an abnormal number of case reports. And it was investigated, and they found out that it did. But then there was a question of whether the human papilloma virus could cause chronic fatigue syndrome because there were a lot of case reports, and it turned out it didn't. Or, frankly there were also a lot of vaccine-caused autism reported to VAERS, but the studies showed it didn't. So you don't actually learn anything from VAERS other than that this is something you might want to test.

The chickenpox vaccine is stabilized with porcine gelatin, and people can have a serious reaction to the gelatin, it's real but rare. But that pales in comparison to what chickenpox did before the vaccine: four million cases per year, 10, 000 hospitalizations, between 70 and 100 would die.

Also, chickenpox lives silently in the body. It can reactivate later in life to cause shingles, it can reactivate early in life to cause strokes. We've seen a few children in my hospital with permanent paralysis from strokes caused by reactivated chickenpox. It's a bad disease, it's worth preventing.

A vaccine's benefits should always dramatically outweigh its risks, and I think for every current vaccine we use, that's true. With the oral polio vaccine, once we'd eliminated polio from this country, the vaccine's risks outweighed the benefits, and we switched to the inactivated vaccine.

Why did the government take over responsibility for vaccine injuries in this country?

Because we almost lost vaccines for American children.

In the early 1980s, there were people who had the false notion that the whole-cell pertussis (whooping cough) vaccine could cause brain damage. There was a tremendous amount of litigation claiming that the vaccine caused epilepsy, mental retardation, SIDS, unexplained coma. There were tens of millions of dollars in awards and settlements for what was not a very big business for the pharmaceutical companies, and they gradually started getting out -- until at one point we had only one company making whooping cough vaccine for children, and that company was about to get out. Whooping cough killed about 8,000 people per year before we started vaccinating, so the government stepped in, to basically protect these vaccine makers from direct litigation. We created the National Childhood Vaccine Injury Act (NCVIA) in 1986, and it did just that.

Can you address what your critics see as your conflict of interest, being both a vaccine advocate and a vaccine developer?

I came to the Children's Hospital of Philadelphia in the early '80s with an interest in working on rotavirus. It's a virus [that causes severe diarrhea] that we know killed 500,000 people per year, I happened to live in a time when we could create a technology that could prevent deaths. I spent ten years working on trying to figure out how to construct virus strains that would protect children safely, I spend another fifteen years working on the research and development. I guess I'd ask critics what they would have had me do -- if we had created strains in the lab that we thought could prevent rotavirus, at that point, we could have just said, "well, we figured it out," and walked away. But the goal of this was to get a vaccine to children in the developing world where the virus kills 2,000 children a day.

Only pharmaceutical companies have the resources and expertise to make vaccines, and they will not do it unless you protect the technology with a patent. They won't do it. We submitted for a patent then went to five companies and ultimately Merck was interested and we moved forward with the vaccine.

What should I have done differently? The logic of those who hate me is that I went into this to make money. But I can tell you I certainly never went into science to make money because no one in their right mind ever does. Certainly the motivation for making that vaccine was that rotavirus killed children, I mean I've *seen* children die from rotavirus. The reward is that the vaccine in now in Mali and Ghana and Bangladesh and Vietnam and basically eliminated the disease from Nicaragua. That's the reward.

Did I make money off of it? I did. But it was like winning the lottery -- it was a lot of money, and it was irrelevant to the work. I don't feel badly about it, it's not like I invented a method to freebase cocaine. I got lucky. I was in the right place at the right time and we were able to create a vaccine that saved lives.

But the money from the rotavirus vaccine -- I've been out of that for a while. So why do I do this [vaccine advocacy]? Because it's the right thing to do. Because children are getting hurt by all this misinformation. It's the reason I went into pediatric infectious diseases in the first place -- because kids get hurt.

Do you think part of the problem with vaccines backlash is that too few people in this country have first-hand experiences with vaccine-preventable diseases?

I think that's exactly it. My parents had no problem vaccinating their children because they knew exactly what these disease could do, same with me; I'm a child of the '50s, I had no problem vaccinating my kids either.

For young parents today, It's not just that they don't see them now, it's that they didn't grow up with these diseases. Vaccination becomes a matter of faith -- but faith in who? In the government, in the pharmaceutical companies? There's been an erosion in that kind of faith.

I spoke with (American Academy of Pediatrics spokesperson) Dr. Ari Brown during the 2010 pertussis epidemic; she said she sees people of grandparenting age disregard their personal experience in favor of what they see on Oprah and in the media. Have you seen this at all?

I think we're abnormally influenced by celebrity. People will seriously consider Jim Carrey, Jenny McCarthy, Bill Maher, or Larry King as a source of health information, and that's sad. It would be funny if it wasn't so dangerous.

In your book, you mentioned that vaccines made it easer for women to enter the workplace.

You can imagine, when measles and mumps and German measles -- all of which I had as a child -- were common, my mother was staying home with each of the three of us as each of us got the diseases. She spent a lot of time at home taking care of sick children.

Vaccines have taken care of the fourteen main diseases that were causing a lot of illness and hospitalizations and death. There's still a lot of infections out there, but they're not quite as severe as the ones we've managed to prevent.

You've been criticized for having an opinion on autism causation when you're not an autism stakeholder, and don't specialize in children with autism. What's your response?

That's a fair question. But I would argue that Jenny McCarthy is also not an autism expert. Nor is J.B. Handley, nor are any of these other celebrities that you see on TV. But I have read the research on the subject since 1940; I'd say that I've read as much if not more than anyone else who is also "not an expert." And as a scientist and clinician, I can form opinions that are reasoned and well-informed.

I'm never going to be an autism expert. The first thing I say when people ask me, "what do you think causes autism?" is that I'm not an autism expert, but I can tell you which studies are compelling. And I *am* a vaccine expert.

I don't represent myself as an autism expert, and I think people like Jenny McCarthy need to be upfront about that as well. They're experts in their own children, they're not experts in autism.

How did you come to donate the profits from your books to the Autism Science Foundation?

I think Alison Singer is a hero. She's the mother of a child, now a teenager, with severe autism. At first she chose to separate out MMR shots, she fed her child the gluten-free casein-free diet; she's a smart gal who, like any parent of a child with autism, is desperate to do anything that would help -- that makes perfect sense.

But then she became much more interested in looking hard at the science. For a time she worked with Autism Speaks -- who have been frankly equivocal about whether or not vaccines cause autism and could have taken a stronger stance in support of the scientific data. That upset her enough to try and create her own foundation -- to stands up to people who are mothers like her. It's very easy for me to take a stand, I'm not a member of the autism community.

I think there's a lot of good science that's being done at major universities, and she's trying to fund it, and I just think that's just heroic. I like to reward people who are being heroes.

There has been a report that the current swine flu vaccine has been causing febrile seizures in some people. Could you talk about this, and  clarify the difference between febrile and classic seizures?

First of all, it appear that it possibly may have been associated with an increased risk of seizures due to fever, but that's still to be determined. I wouldn't say that's solid yet.

There are about 150,000 children who suffer febrile seizures in this country; my daughter had a febrile seizures, actually associated with the DTaP vaccine. They're hard to watch -- my daughter's was a grand mal seizure, it lasted for a couple of minutes, she was out of it for a couple of minutes. But the data are very clear -- febrile seizures don't cause sequelae, we know they're benign. Anything that causes fevers in a child less than two at risk for febrile seizures can cause febrile seizures. Ear infections can cause febrile seizures, colds can cause febrile seizures, not just vaccines. One shouldn't make more of this than it is.

Are vaccines constantly upgraded and monitored for safety and efficacy?

Yes, like no other medical product, including all the drugs you put into your body and certainly more than anything you'd get at the General Nutrition Center. We have a very well-tested, well-worn vaccine schedule.

What have vaccines done? They've helped us live decades longer than we did 100 years ago. There's so much good that's come from vaccines that it really hurts me to watch the way that people just dismiss them. We had five children [at my hospital] die from the novel H1N1 flu strain last year, none of them were vaccinated, all of them could have been saved by vaccinations. It's not OK. It's just not OK.

----

An abridged version of this interview was syndicated on BlogHer.com.

Friday, January 28, 2011

On Autonomy and Establishing Guardianship for My Adult Son

Kim Wombles
http://kwomblescountering.blogspot.com/
http://www.science20.com/science_autism_spectrum_disorders

My husband and I obtained guardianship of my bright boy when he was approaching 18 years old -- the legal age of adulthood in the US. Bobby has a blood clotting disorder which lead to a stroke at aged nine, which left him with significant cognitive disabilities.

Bobby's certainly an adult, but he has a cognitive impairment; he can't spell more than a few words despite many long years of working at it, can't do double digit math.

He is my son, my bright boy, and while I accept and celebrate that he is an adult, the truth is that he is an adult with a cognitive impairment that requires he have assistance. We work very hard to find a balance that allows him the opportunity for growth, to reach his potential. We work very hard to allow him as much autonomy as he is capable of, but it is my job as his parent and his legal guardian to stand between him and those who would take advantage of him. It is my job to make sure he is in a safe environment, he is happy, he is doing what he wants to do with his life.

I take my responsibilities seriously. It is a constant balancing act, and my husband and I regularly reevaluate our decisions. Our experiences as our son’s parents have paved the way for our parenting of our daughters. We didn’t have the steep learning curve that we did with Bobby; we didn’t have the struggle to learn about autism, understand it, or accept it. We’d already done the heavy lifting. I am not where I once was, and I suspect that many parents who’ve been around for a decade or more aren’t. There are some autism bloggers who give us daily reminders that not everyone gets off the pity party, not everyone decides to see the good, to learn, to grow, or hell, even to take a real good look at themselves and their loved ones and realize that there’s a great deal of us in our kids, that we are bappy (broad autism phenotype—it really is a spectrum!) folks ourselves, if not skirting over into autism itself. When we see ourselves in our children, if we have accepted ourselves and our issues, we have no choice but to mirror that with our children, to see them, issues and all, and to love them completely.

Yes, there are serious issues that parents of autistic children face; serious issues that autistics face, as well. Denying these struggles does no one, autistic individuals included, any good. Not every child will overcome the obstacles the world and their neurologies present them. All the acceptance and appreciation in the world will not take a severely impaired child with accompanying medical problems or cognitive impairments and render them independent adults. Not facing that is a tremendous disservice. It ignores the reality that my mother faces each day at her work as a nurse at the assisted living center, that my husband saw every day for two years when he worked as direct care staff there. It denies those individuals their reality, if we assert that there is some potential gone untapped if only someone had tried harder. Accepting people as valuable members of society for who they are means accepting their realities, their neurologies and issues. And then busting our asses to make sure that those who need 24 hour care get the very best care there is, that they are respected, protected and allowed as much autonomy as they are capable of.

There are real questions about how parents balance the need to protect their children from bullies and the harsher realities while still promoting autonomy. How do they display sensitivity to the integral part that autism plays in the child's identity while acknowledging that not everything about a person is due to autism? How do autistic adults provide feedback to parents to guide them so that the decisions parents make are made with an eye to the future self their child will be, so that harm is minimized?

Before Bobby was homeschooled after his stroke at age 9, I was in the school with him many days, working hard to help him get the accommodation and assistance he needed. After his stroke, I was with him all the time, providing all the attention and assistance possible. I assure you, if a mother’s undivided attention and the right attitude were all it took to make an individual fully capable of independence, my bright boy would have had it.

If we are not free to admit where we once were and how we have grown as our children have taught us to see the world differently, then how will we move towards changing the world and making it a better place for all people, regardless of their issues? Admitting our mistakes and learning from them is a vital part of growth and development.

This essay was adapted from adapted from http://kwomblescountering.blogspot.com/2010/04/not-where-i-once-was.html

Wednesday, January 26, 2011

In the Echo Chamber

Mark Osteen
www.loyola.edu/fas/mosteen
www.oneofusbook.com

It’s easy to imagine that a deep silence hangs over people with autism, but nothing could be further from the truth, at least in our case. My autistic son Cameron has always been a noisy, histrionic child. He speaks most volubly with his body, and over the years we’ve learned to interpret this language: gleeful scissors-kicking jumps; contented or angry rocking; a myriad wordless shouts; the fine gradations in a face that to the uninitiated seems blank; an entire lexicon of claps.

Cam’s claps are his personal Morse code. A single clap after he has sung a line or done something he finds remarkable serves as an exclamation point: “How about that?!” A series of claps in front of his open mouth creates a booming effect that means “I’m getting mad,” or “I wish I could tell you what I mean.” Several loud claps and a grimace means “I’m anxious,” or “I don’t like what you told me” (e.g., “stop splashing water outside of the tub”). And let’s not forget those declarative rhythmic claps he favors in public places: “Cam is here!”

He also uses a few all-purpose words, such as “Coke” (which sometimes means “I want a Coke,” but sometimes means “I want ... something”) or “car” (“I don’t know where I want to go, but I want to get out of here”). And he never says plain old “no,” but always “No, okay.” Les and I inadvertently gave birth to this locution through conversations like this:

“Cam, do you want to go outside?”

“No.”

“Okay.”

The two words became a single thought. Those who don’t know him are confused by the phrase: does he mean no or yes? To us it seems to encapsulate Cam’s struggle with language: one word cancels the other.

Sometimes he gives forth a long stream of syllables that sound like gibberish but really aren’t. Over the years we’ve learned to decrypt it.

Cam’s Glossary
  1. “Loo, loo, loo,” or “lu-ee, lu-ee, ah lu-ee” (uttered in a low, even tone) = "I'm really contented,” or "I think you're cool,” or “I’m pleased with myself.” After a gymnastics lesson in 2000, Cam’s coach told me that he seemed to like Louie, another boy in the group. "He kept saying, 'Louie, Louie, Louie.'" I didn't have the heart to tell her that he was just naming his own satisfaction.
  2. "Hooka, tooka, tooka" = "This is really fun.”
  3. "Hey, hooh, huuh" =  “I’m deep in thought.”
  4. "Eeeh, geeta gee!" =  depending upon tone, anything from strong displeasure to panic.
  5. "Huh huh huh" (a fake laugh, followed by rocking)  = “Let’s laugh together!”
  6. “Hmmmm?” =  "Are you noticing me?" (The proper response is "Hmmmm?" followed by a conspiratorial laugh.)
  7. "Cut-tik, cut-tik, cut-tik" (whispered) = "I’m concentrating deeply."

I’ve often speculated that Cam’s expressions are his version of my wife Leslie’s quirky wordplay. This is a woman who can’t leave words alone. Thus “Watson” (her pet name for me) metamorphosed into “Wallace,” then “Walmart” and “walnut,” among others. Similarly, “to pee” evolved into “Peabo Bryson,” and then into “bryson.” A stupid person is not merely dim but “dimsky Korsakov,” or a “nylonhead.” A cold day isn’t “chilly”; it’s “chili-dog,” or “Chilliwack” (fans of ‘70s rock will recognize the allusion). How, we ask, could two such confirmed wordlovers manage to produce a nearly wordless child?

Though Cam’s sounds and multipurpose words do have meanings, they are blunt instruments -- poor tools for expressing anything complex or precise. Hence, we’ve had to become detectives or telepaths, deducing our son’s emotions, desires, and thoughts from his facial expressions, gestures, cryptic syllables. Yet we’ve often failed at the guessing game, partly because his language is so rudimentary, partly because his thinking is so different from ours. At times we’ve felt like poor, beleaguered Alice, protesting to pugnacious Humpty Dumpty that “glory” doesn’t mean, as he claims, “a nice knock-down argument.”

“‘When I use a word,’ Humpty Dumpty said, in a rather scornful tone, ‘it means just what I choose it to mean—neither more nor less.’”

Unlike Humpty, Cam can’t enforce his definitions. Instead his language embodies the eggman’s other major trait—fragility. Once Cam’s language shattered, all of the teachers and all of the speech therapists couldn’t put it together again.

Starting when Cam was four, Leslie I met yearly with his team of educators and therapists. Each year we stressed the same points; we could have recorded the conversation when he was four and played it back when he was eleven: “We think the main focus should be on communication. If he can express his wishes, he won’t have to resort to slapping, pinching and biting.” Every year the team members nodded sagely and outlined a plan. And the next year Cam had made little or no progress. We seemed to live in a gigantic echo chamber where our words bounced back at us year after year.

And so did Cam: for years his spoken language consisted mostly of echolalia. Many experts hold that echolalia isn’t true language, that it lacks the originality, spontaneity and give-and-take of real conversation. Famed neurologist Oliver Sacks even claims that autistic echolalia is “purely automatic” and “carries no emotion, no intentionality.”

Cam’s echolalia did often sound like mechanical parroting. If, for example, we asked him, “Do you want a banana or an orange?” he’s say “orange”; but if we reversed the order, he’d say “banana.” He couldn’t seem to remember that we’d offered two choices. Even when we coached him, his “improved” responses were often just redoubled echoes: “Do you want bread?” “Bread.” “Don’t repeat; say ‘yes.’” “Yes.” “Do you want bread?” “Bread, yes.”

But other researchers have shown that echolalia serves a variety of linguistic functions, and autistic authors such as Jasmine O’Neill and Donna Williams write that their childhood echolalia gave them time to process others’ words and a way to join conversations.  In any case, our own experiences have proven Sacks’s hypothesis wrong—or at least incomplete. For example, in the bread exchange, Cam isn’t just echoing; he’s also assenting. And sometimes Cam’s memorized scripts have a metonymic relationship with the circumstances. Thus when Cam wanted to end a speech therapy session, he said, “Take your shoes off,” by which he meant “Put your shoes on”—i.e., “let’s get ready to go home.”

Cam still uses phrases he learned from old toddler books or kids’ songs to express himself. When he looks at Les or me and says, “Guess what, Max?” we are to respond with “What?”—the next sentence in the book Max’s Christmas, which he memorized at age two—and then we must recite the entire book. These questions and answers may not be “true” conversation, but they involve give and take, shared attention and associations. They are his way of asking for help or intimacy.

Sometimes an echo’s meaning is quite clear. One morning, for example, he bounded into our room, crawled into our bed, and led us through Barney’s theme song: "I love you, you love me / We're a happy family. . . .” He knew exactly what he meant and so did we. I’ve always hated that song, but when Cam sang it, the saccharine sentiment carried a redeeming poignancy.

Such incidents inspire wonder at his capacity to comment on his world, to compensate for his disability by selecting the right script. And once in awhile, his ritualized monologues become less cryptic, as he composes an idiosyncratic “mash-up” that mixes snatches of songs, words and near-words in a strange and beautiful poetry: “Heeka-deeka duh, ah loo, ah loo, ah yuh you, hoppeen on one foot, huh-huh.” It’s as though he has traveled to some distant place and is reporting what he’s seen there. Who could doubt that these tactics display creativity and intelligence?

Yet Cam’s inability to generate novel phrases remains deeply debilitating. Sometimes, for instance, the scripts interfere with his meaning. Let’s say he wants to go for a ride, and we ask him to use proper words.

“Cam, what do you want?”

“Car.”

“Can you say ‘I want to go in the car?’”

“Car, yes.”

“I want.”

“Want.”

“To go.”

“Go.”

“In the...”

“Bed.”

Why does he say “bed” when he means car? Because “in the” precedes “bed” in the memorized phrase “sleep in the bed.” He seems to forget the original request once the sentence is broken into parts, and instead of recalling that in this context the phrase ends with “car,” he lets the script “in the bed” usurp it. Yet he knows full well that “bed” is the wrong answer. So after saying “bed,” he’ll growl or clap angrily, as if to say, “Damn it, I don’t know why I said that, because it isn’t what I meant.”

Sentences are thin-shelled eggs; once broken, they can’t be reassembled.

We neurotypicals flip through our mental rolodex until we find le mot juste -- the appropriate word with the right nuances. Usually we retrieve at least an approximation. But even when Cam has used a given word many times, he still must hunt laboriously for it like someone looking for pictures in a dark, crowded attic. He’ll stare into your eyes and scan your face intently. You gaze back at him, trying to will the words into his mind. He grabs the closest approximation--a garbled word, a metonym--but there may be no picture for what he wants to say. How, for example, can his concrete mind convey something like: “I’m anxious about entering this noisy, unfamiliar building?” Shouting “Coke!” won’t really do the job.

When Cam was about nine, we started using assistive technology devices: first an Easy Talk machine (a console of large buttons with pictures pasted on them; you push the button and it says a recorded phrase), then a Language Master. The gave me the eerie feeling that it had snatched Cam’s lost words from the ether to give them fleeting expression.

The machine said what he couldn’t, and said it clearly every time. But we could never create enough cards for all the possible situations in his life: the machine could not say, “I feel sick,” or “I’m afraid,” or “That sound hurts my ears.”

Noted autistic author Temple Grandin writes that she thinks not in words but in pictures. Is Cam’s head also filled with a slideshow of captionless illustrations? If so, does he maintain that voice in his head that comments on his activities, makes long- and short-term plans, tells him what to do next? Sacks theorizes that many autists can’t connect individual experiences into a continuous narrative, and thus exist in a pure present of “vivid, isolated moments, unconnected with each other or with [themselves].” Anyone living in such a “pure present” would seem to lack the self-awareness we identify with true human consciousness.

Our son has sometimes behaved as if he lived in a pure present, failing to remember an activity from one day to the next, or not recognizing people he’s known for years. But sometimes he says something so appropriate you know he must tell his own story.

When he was about five we drove from Baltimore to Atlantic City so I could take the test to become a Jeopardy! contestant. The long day tapped out Cam’s shallow reserves of patience. As we wearily rode the elevator back to the parking lot, two grizzled gents, reeking of smoke and stale liquor, boarded the car with us. This was the final indignity: as soon as the door thumped shut Cam started shrieking. Then, suddenly, he stopped and shouted, with perfect clarity, "I need to go crazy!"

One of the casino habitu├ęs nodded sagely and said, "We feel the same way, kid."

Cam had made perfect sense: this elevator is too small, I don’t know these people, and I want to scream! Such moments prove that he does narrate his life, and even has some understanding of his condition. They also remind us again how often he reaches for words but comes up empty. And they make me wonder: does he think fluently in words but stumble only when trying to say them?

Other linguistic eccentricities invite further speculation. For example, Cam often uses “I” for “you” and “he” for “I.” Since nobody has ever called him “I,” he figures--with sound autistic logic--that he is “he.” But he’s not sure. So he takes a middle ground, employing a pronoun that combines “he” and “I”: “Ee take a baff.”

If a person has trouble using “I,” you have to wonder if he thinks of himself as an “I.” Does Cam live at a distance from himself, responding to his own acts with bewilderment, as if they’ve issued from some other “he”—maybe the other person he calls into being when he watches his fingers create shadows. On the other hand, perhaps the problem is that he can’t imagine himself as another person might see him. Given this “theory of mind”dysfunction (the notion that autistic people don’t understand others’ thoughts), perhaps Cam’s problem is not that he’s too distant from himself, but that he can’t distance himself from his own thoughts and actions, can never see outside his own obsessions, never breach the walls of his echo chamber.

Because our son so seldom talked, we fell into the bad habit of treating him as if he couldn’t hear. When we was very young and nothing seemed to penetrate his cocoon, he might as well have been deaf. In later years, however, he occasionally showed us quite plainly that he understood our words. One day I was talking with our head therapist about how hard it was for Cam to think of the right words, and started recounting the history of his language problems. After a couple of minutes he put his head on her shoulder, then approached me, growling and gnawing fiercely on his rubber chew toy.

The reason dawned on me: "I think he wants us to stop talking about him," I said. "I think it bothers him." First he seemed to want sympathy, then had acted embarrassed, and finally irritated. I realized with chagrin that we’d been treating him like an infant or pet. Our life might have been easier if he were: at least then we could reliably gauge his cognitive abilities.

One morning, after Les told Cam--then aged eleven--that he couldn't go outside until after breakfast, he launched into one of his wordless monologues, concluding with a phrase that sounded like, "That's annoying."

“Did you hear that?” Leslie said to me.

“I did. Is that even possible?”

We shook our heads, wondering all over again if normal language lay somewhere in his brain, misfiled and unavailable. When those spotlights of comprehension shine through the fog of the disorder, you no longer trust your judgment. In the wake of such utterances, our hard-won accommodation to reality is, like Humpty’s shell, shattered all over again.

But then we realized that, despite a life of setbacks, Cam has never given up trying to talk. How, then, can we ever stop listening?

----

One of Us: A Family's Life with AutismExcerpted from One of Us: A Family's Life with Autism by Mark Osteen, published by the University of Missouri Press. To order this book, please call (800) 621-2736 or purchase online at press.umsystem.edu.

Monday, January 24, 2011

Rethinking Employment Opportunities for Adults with Autism

Scott Standifer
Disability Policy and Studies Office
School of Health Professions
University of Missouri
http://dps.missouri.edu/Autism.html
standifers@missouri.edu

Introduction from the editors:

Many of our readers are from outside the United States, or have children with autism under the age of 16, and so are not yet fully aware of some of the elements of employment and employment planning for adults with disabilities in the US, including autism. The following brief summary is an orientation.

In 1973, the United States passed a law that directed federal and state authorities to assist people with disabilities to find employment. In the same time period, the US mandated that children with disabilities must receive educational services, and to be provided with planning for transition from the school years to subsequent employment. In the subsequent years, transition from school to work has evolved in many ways.

In the US, the system for helping people with disabilities find employment is called “vocational rehabilitation,” or Voc Rehab.

Back in the 1970s, there were thought to be only three alternatives for employment for people with disabilities, including autism:
  1. “Competitive employment,” meaning “a regular job”-- employment in the same settings and with the same supports as a person without a disability; – that is to say, few to none.
  2. “Supported employment,” meaning nearly “a regular job” with additional systems of supports, such as a “job coach” or a job specifically developed for the person.
  3. “Sheltered” or “secure” employment (also called “a workshop job” , meaning a job in facility specifically designed for people with mental or physical disabilities). “Sheltered” may mean that the setting does not provide training that would allow for more independence, while “secure” tends to mean that workers also have further training in work skills and other social/behavior aspects that may later lead to more independence.
Over time, this model has been tested and adapted, as both the field of vocational rehabilitation has grown and the specific experiences of individuals with disabilities have revealed other needs.

The author of this post, Scott Standifer, is a leader in recognizing the specific employment challenges facing adults with autism, and in finding ways to meet those needs. He is one of the principals in a national conference to be held March 3-4 in St. Louis, MO, Autism Works. The goals of the conference are to enable people with autism, allies of those with autism, and vocational rehabilitation professionals to meet and develop new approaches to developing and sustaining employment for people with autism. Details on the Autism Works conference are available at http://dps.missouri.edu/Autism.html or at http://www.facebook.com/pages/Autism-Works/136057253090452

In this post, Standifer interviews Cary Griffin, another leader in rethinking the employment needs for adults with disabilities, and specifically for those with autism.

Cary Griffin is a noted disability employment consultant and author, and is a senior partner at Griffin-Hammis Associates, a nation-wide consulting firm that helps to develop employment opportunities for people with all kinds of disabilities. He has a long history in the field, with a special interest in nurturing self-employment for people with disabilities.

Griffin believes that traditional vocational rehabilitation supports (training for job seeking, interviewing skills, resume writing, etc.) are not the best answer to develop jobs for people with autism.

Speaking from his home in Montana, Griffin says, "Traditional job development (searching want ads, cold calling, using word-of-mouth connections), from an economic point of view, has always been based on faith and charity. You hear it in the comment "Well, no one would give me a chance". Why should they? That's not what business owners are there to do. It is up to us to make an argument for how this person can contribute and earn a paycheck – just as we all do for our own paychecks."

While people on the autism spectrum have some unique support needs for employment, Griffin says the failure of traditional job placement and job development strategies is not autism-specific. These traditional approaches have never worked well for any group of people with disabilities. He calls it "a dependence model and a poverty model" of employment.
Griffin is an advocate for a philosophy called Customized Employment. This term was coined from the top in 2001, when the Office of Disability Employment (ODEP) was created within the US Department of Labor. As always, it takes time for ideas to reach fruition with real clients.

The Customized Employment (CE) approach starts with building a deep-knowledge profile of the person with autism (or other disability), goes on to define the "ideal conditions of employment" for that specific person, and then engaging potential employers in interest-based negotiations that reveal the benefits which hiring a specific person will have for both parties.

"We have to mine the conditions and supply chains for businesses for opportunities for employment," Griffin comments. This means looking at what resources, supplies, and services local businesses need and how the particular individual might provide those. Griffin often proposes various types of self-employment as customized employment solutions. And the CE philosophy is achieving great successes for some clients.

One example Griffin points to is a young man with autism named Jason. Jason runs a towel sterilizing business that services local barber shops, tanning salons, and beauty parlors in a large metro area. Using the customized employment model, Jason's support team first defined the "ideal conditions of employment" for a clear understanding of what would work for Jason. Jason's father is a barber, which helped refine the business design. Today Jason not only has a successful business, he also has a part-time employee who drives to do deliveries and pickups with Jason, and to handle sales. Jason has not only found a job; he is helping local businesses be profitable and is creating employment for someone else.

In another example, a young man with autism named James has strong computer skills but lives in a rural area. James' support team noted there was a moderately large company with many small offices scattered across the rural area. Each office needed a computer technical support person, but the company could not afford to have someone on site across so many offices. James now meets that need by providing remote computer diagnostics. When an employee of the company has trouble, he or she calls James. James takes over their computer via the internet, diagnoses the problem using specialty software, and either fixes the problem or sends another team member to perform the repair.

Griffin says these customized approaches – individualized to both the person with autism and the needs of local business, are the best solution for employment: "The traditional job development approach is like retail - looking for jobs that already exist and are sitting on the shelf. It is as if you are saying 'I want to buy a box of jobs.' That doesn't work well. For really effective employment, the jobs will have to be off the grid. It will have to be something that matches the needs and skills each person with autism can bring to the job."

Thanks in part to the 25 or so consulting projects of Griffin's company, this customized employment approach is spreading across the country.

James Emmett, a national consultant on autism and employment, says the autism community should listen to Griffin: "Across the country, Cary Griffin has been a leader in, initially, supported employment, and now in customized and self-employment. He understands both the needs of business and of people with significant disabilities. Cary is someone who has always been ahead of the trends and he is part of what is going to be next for people with autism and employment."

Griffin admits there is still a lot of work to do around autism and employment. He sees vocational rehabilitation agencies across the country struggling to provide successful services to adults with autism and reaching out for options and alternatives. However, serving clients with autism is clearly part of the mandate for all vocational rehabilitation agencies: "The Rehab Act says Voc Rehab is to work with the most significant disabilities. I don't know how you can leave autism out of that."

"In Florida we helped Voc Rehab rewrite their self-employment policy to be more inclusive of people with significant disabilities like autism. That's exciting."

A previous version of this essay was published as Cary Griffin - Why Job Seeking Won't Work for Autism [PDF]

Resources

Friday, January 21, 2011

Profound Lessons from Asperger's Syndrome

Sam Keller
www.scrappysam.com

It was the night of the Volunteer Appreciation Dinner at our church.

As the pastor’s wife, I am generally required to attend these sorts of things with the unspoken expectation to always smile, be nice, and glow with the joy of the Lord, even if I have to, dare I say ... fake it. I was running late that evening, overwrought with juggling three kids, sports practice, and a cranky baby. My plastered-on smile thinly hid tears of frustration leaking out my nose. As I stood and perused the room full of familiar faces, the tension in my spirit only clogged my throat more. I felt like an intruder interrupting a play in the second act. The crowd was engaged in conversation and gaiety and I felt like I was barging in with a bag full of awkward. I stood on the outside, trying to find the right moment to break into the group, but none seemed to be forthcoming. Then I saw him, a boy with an apparent disability, obviously struggling to find his place, and something in my heart connected, his outward instability mirroring my own inner turmoil.

I sat down next to him and smiled, possibly the first of the evening with any real emotion behind it. The seats were close and our shoulders brushed when I scooted in my chair. He looked up at me and frowned, his large eyes expressing scorn at my presence. In a cheery voice, I stuttered, “Hello!”

Instead of “hi” in return, he groaned, “ughh,” and rolled his eyes, disgust dripping from his every breath. Stunned, I could only laugh. Peals of tension rolled away in a glorious moment of self-deprecating humor. Not that I would ever show it, but I too, have moments when I want to turn and run the other way from people; his complete transparency was a treasured gift. There was no guile or charm about him, just raw emotion spewing from his soul.

His mother jumped in and apologized profusely. “Our son has Asperger's syndrome” she whispered in explanation. Both the mother and father appeared exhausted and overwhelmed. I noticed they had two little boys sitting next to them as well. Their weary faces told a story of resignation and personal agendas relinquished that I couldn’t even imagine. My little pity party quickly faded in the light of their self-sacrifice in caring for a child with special needs.

I nodded my understanding, but was determined not to leave, even though I could sense her apprehension regarding her son’s erratic behavior. Just then, one of my favorite ushers sat down on the other side of the boy. He started to talk to him, just jabbering really, anything to try to help relax the boy’s parents. He told the boy that I was the pastor’s wife and that I used to volunteer with high school students. The boy covered his ears. He went on and shared with him how I had helped start our church with my husband. This time the boy yawned. My usher-friend shrugged his shoulders and looked sad, but somehow I knew I wouldn’t break through his walls with an assortment of credentials.

The boy turned and faced me. “So what do you do now ... right now?” he asked.

His question caught me right in the middle of bite of pasta, which slipped off my plastic fork and landed on his right foot. “Well,” I said, willing to throw caution to the wind, “Sometimes I like to throw noodles.” And I launched another one at his left foot.

The boy burst into laughter along with the rest of the table and a gentle wave of release rolled over us. His protective walls came down and he suddenly he began to chatter away, allowing us for a short time, to enter his world. He told us all about his love of McDonald’s desserts and how Korea had the best dessert menu of all. His mom jumped in and shared that he had memorized every McDonald’s menu in the world, country by country. Clearly brilliant, opinionated, and passionate, he was both, at once, delightful and overwhelming. But for a brief moment, his mother relaxed and let go of her tension, sitting back and joking with his two younger brothers.

The boy’s father came back to the table with an enormous piece of carrot cake for him. He gently placed it in front of him with a plastic knife and fork and smiled at him. In one swoop, the boy inhaled half the cake. The father's smile quickly disappeared. “Slow down, bud! Use your fork and knife!”

But the boy did not like to be reprimanded and he grabbed the knife like a dagger and stubbornly resisted his father. In a battle of wills, the boy reluctantly cut the remaining piece in two and shoved them both in his mouth. Trying not to tremble, the knife only inches from my face, I dared not move an inch. With lightning speed his father grabbed the knife, cleaned up the frosting smeared all over his child's face and sent him off to explore the church. His mom trotted after him, glancing back with an apologetic look. The father collapsed into the chair and rested his head in between his hands, exhausted and embarrassed.

“You know you are doing a great job, don’t you?” I said.

His eyes filled with tears and he whispered, “I don’t know. He’s better at home. He feels safe there.”

Our eyes met, acknowledging a difficult situation at best, recognizing that sometimes there are no words. I could see his fierce and unconditional love for their first-born son mixed with sadness, disappointment and struggle. His wife came back to the table and the little boys ran off to play and watch out for their brother, another reminder of how their whole family was affected by Asperger's.

“Does he ever get lost?” I asked, noticing how he would become entranced by an object and take off at full speed, only to have his attention caught elsewhere a moment later.

“Not usually,” they said in unison.

His mom laughed, “Then again you don’t see us exactly running after him.” They smiled at each other, an inside joke perhaps, all the more tender to the observer because of their apparent love for each other.

“But he always comes back,” she said with exasperation and acceptance.

Then we took communion together, a group of broken people, acknowledging our Savior’s sacrifice.

I watched them pack up the boys and head home. Neither of them had been chosen as one of the volunteers to be publicly affirmed in front of the crowd that night, but then, their offering to the Kingdom and the church wasn’t a loud one. It was a quiet and daily surrender, a desert journey of faith that these two humble Saints had said “yes” to. In the light of their obstacles, I was amazed that they continue to show up, to volunteer.

And, as I gathered up my own little flock for the night, my heart encouraged and challenged by the sacrificial love of this family, my burdens didn’t seem quite so heavy anymore and my church felt like home once again.

----

A version of this essay was originally published on Everyday Christian.

Tuesday, January 18, 2011

An Interview with Seth Mnookin, Author of The Panic Virus

It is bizarre that claims linking vaccines to autism have persisted for more than a decade when they can be debunked by a sixty-second Google search. But, as investigative journalist Seth Mnookin explains in his new book The Panic Virus, vaccine facts can't always compete with parent-, internet-, and media-generated vaccine beliefs.

The Thinking Person's Guide to Autism talked with Mr. Mnookin about his book, about the risks of complacency regarding public opinion on vaccines and autism, the flaws of modern science journalism, why and how pediatricians need to step up their participation in vaccine education, the tragedy of an autism community divided, and why we need to keep blasting holes in echo chamber walls.

-----

Why did you feel compelled to write this book?

It was not because I had a personal connection, which is odd because it's such an emotional topic. But I was shocked at how people were discussing an issue that seemed to me would have to be fact-based, as if it was belief-based.

Like many reporters, my first instinct was, "Oh, a juicy story about how the pharmaceutical industry and the government are conspiring!" The ingredients seemed to be pointing towards a Lorenzo's Oil type thing, with a group of parents working against very powerful interests.

From the beginning, it was more a combination of a sociological story and a scientific story. People I knew were having this debate. Which is fascinating, because it wasn't people who were directly affected -- it wasn't parents of autistic children, it wasn't parents who believe their children had been injured by vaccines, it wasn't people who worked for Pfizer -- which now, looking back, seems incredible.

The Panic Virus is a Gawker book club selection, and has received praise from skeptics like Michael Shermer -- but aren't they already the converted? Who are you trying to reach?

It's not that I'm not interested in reaching people who agree with me, but it's easy to create the situation I've tried to critique a little bit, where everyone is agreeing with you in louder and louder language. It's gratifying when people whose work I respect and admire respond positively, and I'm glad that for the most part I've been able to present science in a way that people who know the science don't feel has been dumbed down.

But the people I'd most like to reach are the people who sparked this initially, just average parents. To extend that, not just average parents -- another thing in working on this book that I found simultaneously disturbing and fascinating is our cultural lack of curiosity about science, and the ways in which that then affects public policy, and affects our actions. All of that is I think is a big problem, so I wanted to write a book that used this specific narrative throughline as a way to interest people in the way it affects other issues.

It seems as though in the past two weeks, with Offit's book on the anti-vaccine movement  and the BMJ's declaration that Andrew Wakefield's research was an elaborate, mercenary hoax, we may have reached a tipping point regarding public opinion on the vaccine issue. What do you think?

I think that would be great [chuckles skeptically]. Certainly in the last two years when the first round of omnibus rulings [dismissing federal test cases on autism-vaccine links] came out, then the second, then the GMC ruling against Wakefield, every time I thought, "Well, we've reached a tipping point, now there's so information much out there..." and it kept not being true.

Monday, January 17, 2011

Autism and Mother-Blame

Amy Tuteur, MD
skepticalob.blogspot.com
www.askdramy.com

On the surface, the old idea of the "refrigerator mother" causing autism and the new quack idea of vaccines causing autism might appear to have little in common. However, as Dr. Michael Fitzpatrick notes, they both rest on the same deeply flawed belief: it is the mother (through her emotional response or her actions) who causes autism in her child and it is the mother (through her emotional response or her actions) who has the power to prevent autism.

Fitzpatrick is the author of Defeating Autism: A Damaging Delusion, a physician and the parent of an autistic child. He writes bitingly about the quackery in the "crusade against autism." Jenny McCarthy is an obvious target:
In the foreword to Louder Than Words: A Mother's Journey Into Healing Autism, Jenny McCarthy is described as the 'polar opposite' of the 'refrigerator mom', the quasi-demonic figure blamed by a generation of postwar American psychotherapists for causing autism.

Yet the concept of the 'warrior mom,' as McCarthy presents herself in her latest book, is not so much the polar opposite of the 'refrigerator mother' as a distorted mirror image. The 'warrior mom' is yet another reflection of the culture of mother-blaming and a manifestation of the burden of guilt carried by parents as a result of the influence of pseudoscientific speculations about the causes of autism.
Fitzpatrick elaborates:
The 'refrigerator mother' and the 'warrior mom' are linked through the decades by feelings of guilt, anger and blame. In Mother Warriors, McCarthy tells of a cathartic moment when her therapist tells her that 'you have never dealt with the fact that you feel guilty for Evan's autism'... When the guilt subsides, the rage takes over. Drying her tears, as she puts it, 'I decided I had to go and kick some ass in the paediatric world'. Blaming themselves, blaming their doctors, blaming the world, 'warrior moms' carry the burden of both causing and curing their children’s autism.
The idea that mother's are responsible for causing autism and curing it share important themes. First, it rests on the notion that the cause of autism is environmental and therefore easily modified. The role of genetics, which is almost certainly the primary cause of autism, is ignored:
Then it was toxic parents; today it is alleged environmental toxins (such as vaccines containing traces of mercury or MMR) to which parents have exposed their children. These theories also have the common features that they are entirely speculative and lacking in scientific support.
Second, autism, rather than being recognized as a feature of the child, is portrayed as something that attacks, hides or traps the "true" child.
... The Empty Fortress was the title of [psychotherapist Bruno] Bettelheim's book and his characterisation of the imprisoned self of the autistic child (notoriously compared with a prisoner in a concentration camp) that had to be liberated through psychotherapy. 'My son is trapped inside this label called autism, and I'm gonna get him out', declares McCarthy in Mother Warriors...
The concept that autism is an intrinsic feature of the child is rejected for the more acceptable fantasy that autism is something that happened to the "real" child, and can therefore be prevented or reversed by simple modifications of the environment.

This fantasy dovetails nicely with the dominant contemporary mothering ideology that positions mothers as risk managers who "educate" themselves (about pregnancy, birth, vaccination, food, etc.) for the project of creating the perfect child. The child thus produced simultaneously reflects the mother's competence, and advertises the mother's superiority among her peers.

The autistic child, in many ways viewed by our society as the ultimate imperfect child, is a visible sign of parental failure. The desperation to avoid the stigma of this failure leaves mothers of autistic children particularly vulnerable to quacks and charlatans (like Jenny McCarthy) peddling pseudo-scientific theories of autism's cause, its prevention and its treatment.

Autism almost certainly has a genetic basis and discovery of that basis should prove liberating for both autistic children and their mothers. Purveyors of the faulty idea of the "refrigerator mother" taught women to blame themselves for their children's autism. Charlatans like Jenny McCarthy continue to encourage mothers of autistic children to blame themselves, not for their purported emotional frigidity, but for their purported negligence in failing to "educate" themselves about vaccination and failing to "protect" their children from vaccinations.

This mother-blame has got to stop. There are more than enough things for mothers to feel guilty about. Autism should not be one of them.

----

A version of this essay originally appeared at The Skeptical OB: http://skepticalob.blogspot.com

Friday, January 14, 2011

Dentistry and the Autism Spectrum

Dr. Greg Evans DDS
www.biggrinswithdrgreg.com

In my pediatric dental practice I like to say we treat children. And I like to pause at the end of that sentence. No qualifiers. My father, a junior high school teacher of thirty years, said it a little differently:
“They are all good kids, only the time and circumstances have changed”
Each child has basic needs, including oral health. Those basic needs do not change based on the developmental age, social environment, or neurological wiring of the child.

The circumstances have changed, though. In my early school years, children with special needs were routinely sequestered from the mainstream, and those practices carried over to healthcare. Now the schools show progress, though in healthcare, some of those ‘traditions’ continue. With separation came differences in treatment and different standards of care ,and that has led to a dearth of knowledge within the medical and dental professions offering good basic care for special needs kids.

For autism, the increasing acceptance of the diagnosis has led to the need for Dentistry to find good treatment options. Several articles in both Pediatric and General Dentistry Journals have featured autism in the past year. Mostly, these articles seek to educate practitioners about Autism. They do not offer many actual treatment hints for procedures.

The same is true for a dental sedation course I attended by the leading Pediatric Sedation authority in the nation, “no, autism is usually a contraindication for in-office sedation due to the unknown (and un-researched) possible reactions to the traditional sedatives.” When I asked how other pediatric dentists treat children with profound autism, no one had any answers beyond the customary ‘go to the hospital’ alternative.

So where does that leave us? For Autism, for your child, personal experience is the best we have to go on. As one article stated,
“Autism treatment and research have been separate entities. Children with autism need help now and cannot wait for research to be conducted and treatment to be developed.”.
I firmly believe that establishing a long term relationship with an office and dentist is the best way to go about treating a child with an Autism Spectrum Disorder.  Becoming comfortable in an office is a two way street, the parents and child gain familiarity and trust, and the dentist can try to adjust behavior modification methods over time with a history to draw from.

The very nature of the dental visit is difficult for a child with autism. The disruption of a schedule, the unfamiliar noises and interaction with new children, intrusion into the mouth with heavy physical contact, and lying prone are all problematic. And I haven’t mentioned any actual procedures yet! So where do you start?  Below is an outline of how I would suggest choosing a provider and getting treatment for your child:

Research
Pediatric dentists are going to be your best resource for experience with autism; general dentistry provides no training whatsoever. Call the offices and look online. If the dentist mentions special needs and the staff is comfortable discussing your child’s autism, chances are good they have experience and are comfortable with the challenge. You can always call the dentist directly to discuss philosophy.  Be careful not to use the conversation as a means to express your expertise on Autism -- dentists are human, too and won’t be receptive to a new person dictating treatment in lecturing. It’s a relationship you’re trying to feel out and begin after all!

Go in for a desensitizing visit
If you can find the time, visit the dentist office before you have a formal appointment. You can turn in paperwork or pick up some so you don’t to mess with it later. More importantly, give your child a chance to see the surrounding in a non-agenda driven manner. This will help to phrase your conversations later and give you a feel for the atmosphere of the office.

Schedule
Pick a time the dentist and dental team can devote to your first visit. In our practice, we set aside time every day during less busy clinic time, to slow the pace, reduce distractions, and give kids more personal time. You are also going to want time to consult with the dentist to talk about how to treat your child based on his or her performance during the appointment.

Be realistic about the first appointment
Depending on the degree your child is affected by autism, you should set your goals accordingly.  For some, a cursory exam to rule out big problems or pain may be the best that can be done. I have a 23 year oldd, six foot four autistic boy whom I have seen for the last fifteen years (we started in my residency!). At first all he could do was to get into the room. Our first exam was done with him sitting cross legged on the floor. Last year, we completed a porcelain crown for him in the office, by himself.  Of course we had help from his Count Dracula doll, and a very long term relationship to draw from.  Incremental successes contribute to our long term goals of overall health.

Discuss options for treatment
If treatment needs exist, fillings, deep cleaning, a suspicious area that needs an x-ray, how can we get it done? For kids with Asperger’s or mild autism, routine behavior techniques work well with the right dentist. Tell-show-do, watching other children, and firm direction often work just fine [and social stories! -Eds]. For the kids whose autism is more intense, a mild anti-anxiety medication such as Ativan or Klonopin may help to take the edge off fears, or disorient the child enough to be led through treatment. You need to check with your dentist and your state to see what constitutes anti-anxiety and minimal sedation (don’t forget to call your insurance to find out what can be covered). It is sometimes best to take a child to the hospital for general anesthesia. Under general anesthesia, complete x-rays and a thorough cleaning and exam can be done, as well as any restorative needs or preventive sealants, mouthguard fabrication, etc. In my practice I often coordinate with other medical professionals while patients are under general anesthesia, to do blood draws, ear tube placement, eye exams, pap smears, toenail removal, you name it!


Ask your questions
Often I am lumped in with my medical colleagues and often parents have had a history of having to scream to be heard when advocating care for their child. I understand that, but be aware that a relationship starts with a position of mutual respect.   Ask questions about the dentist’s view on nitrous oxide use, what is in the prophy paste, views on fluoride, and the rest in a non-threatening manner, and give the dentist time to research his or her answer. There are no dental or skeletal manifestations of Autism, in other words, teeth are teeth. That being said, if you do have thoughts on alternative medications, diet, etc. don’t paint your dentist into a corner. In fact he or she may be grateful for some reading material. Having your child’s dentist on your side for emergencies, etc. is critical. And when I know a kid well enough to note him being mischievous versus assuming behavior is based on his diagnosis, it takes the burden off the parent and lets your kid be a kid. Letting your child be himself or herself in the dental office is the ultimate goal. Taking a long-term, relationship approach is the best way to reach that goal. How you get there or if you ever get there will be largely based on the way you set up the relationship with a qualified dentist.

I will be seeing little Tyler in the hospital next week -- only he is not so little anymore. He has Down syndrome and autism, and while his behavior in the office got a little better around age nine, it has deteriorated now that he is 13 and 110 pounds.  Neither the parents nor I are really happy with the reality that Tyler could not progress to independent behavior in the office, but over the years we have, together, tried everything to meet that goal.  Now, we can honestly talk and figure out the best way to care for Tyler.  General  anesthesia every two years with the best cleaning we can do in the office between times is what everyone is comfortable with. That’s dentistry for real people making a real effort every day.

If you have further questions or comments let me know at greg@biggrinswithdrgreg.com, or 970-481-6728.  I want to help you raise happy, healthy, beautiful children.

- Greg Evans, DDS Diplomat of the American Board of Pediatric Dentistry

For more information about Dr. Greg, his wonderful caring staff and Big Grins: www.biggrinswithdrgreg.com

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A version of this essay originally appeared at Sensory Flow: An Online Magazine for All Things Sensory: www.sensoryflow.com

Thursday, January 13, 2011

National Conference on Autism & Employment March 3 & 4

Announcing Autism Works - a national conference on autism and employment.

The conference will be Thursday and Friday, March 3 and 4, 2011, at the Sheraton Westport Hotel in St. Louis, MO.  The conference will bring together the disability employment services community (vocational rehabilitation) and autism community to learn from each other and improve employment options for adults with autism. Topics will include: understanding the vocational rehabilitation (VR) process, what VR counselors need to know about autism, job development and work-place supports, funding possibilities for employment supports, and insights from working youth with autism.  The University of Missouri’s Disability Policy and Studies office, along with Integrated Behavioral Systems, is presenting this national conference.

Registration rates and info:
  • $205 2 Day
    $125 1 Day
    $180 2 Day Student Rate
    $105 1 Day Student Rate
Articles from the conference:
Conference organizer Scott Standifer and James Emmett are also holding a series of webinars on adult autism and employment; Scott is holding another seminar for National APSE (Association of People in Supported Employment) later this month as well.

For more information on the work of Scott Standifer, see the University of Missouri's Illumination magazine's article Aging With Autism.

Wednesday, January 12, 2011

What is Sensory Processing Disorder?

Hartley Steiner
www.hartleysboys.com

Recently I have seen a rise in the number of articles, Facebook posts, and even tweets claiming to define Sensory Processing Disorder. This should be good news, and it is -- mostly. But, some of it is misinformation.

Although I am thankful anyone wants to help spread awareness, it frustrates me personally that these people could very well be doing more harm than good. I have dedicated a large portion of my life to spreading awareness that will hopefully benefit kids like mine -- all over our country and arguably the world. I would really like to see good, solid, accurate information. Wouldn’t you?

It is with that goal in mind -- to educate and help -- I am taking a stab at answering the increasingly popular question, “What is Sensory Processing Disorder?” My answer, and this article, is specifically geared towards helping parents with SPD kids have a response for the strangers (and even family members) who might stare at or judge us. We are on the front lines, and we have the biggest stake in making sure that the message being sent about Sensory Processing Disorder is complete and accurate.

Now, I’d like to start with a few myth-busting points:

“SPD is on the Autism Spectrum” or “SPD is a mild form of Autism” – FALSE
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Although a significant portion of kids with ASD do have sensory issues (estimates range as high as 85%), the opposite is not true. Many children with SPD do not have ASD.

“They are trying to get SPD added to the Autism Spectrum in the DSM” -- FALSE.
The goal of the SPD Foundation and Dr. Lucy Jane Miler is to get SPD recognized as a ‘stand alone disorder’ in the DSM-IV.

“SPD just means that a child doesn’t like loud noises” – FALSE.
SPD is not just a single symptom, nor is it about 'sensory preferences.'  Children with SPD have sensory differences severe enough to affect their social and academic development.  It is much more complex than 'not liking loud noises.'  And, although children with SPD can avoid sensory input, they can also seek sensory input.

“SPD is the new ADD” – FALSE.
Our society has become increasingly obsessed by labels. However, like ADD, Sensory Processing Disorder is real. Just ask the thousands of families who read my blog every month -- it is a legitimate health issue that needs to be recognized so that these children and families can get the help they need.

“SPD affects all five senses” -- INACCURATE.
This is probably my biggest pet peeve. We have seven senses! Touch, Taste, Smell, Hearing, Sight, Vestibular, and Proprioception. If you are reading anything (blog, tweet, Facebook, article, newspaper, etc) that claims SPD affects 5 senses, stop reading. If they do not know at a minimum that there are seven senses, this person is not an expert.

Now, let’s get to a real and workable definition.

The Sensory Processing Disorder Foundation’s website says:
“Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.”
Let’s break that down to a simple, easy to remember and crazy-easy to understand definition.

…the way the nervous system receives messages…
This refers to the messages received from all seven senses and how they are conveyed to the brain through the nervous system. The brain is the central processing unit of the nervous system, as that is where the ‘processing’ occurs. By ‘processing’, we are in very basic terms referring to whether or not the brain ‘understands’ ("registers and integrates") those signals. When the brain misinterprets the signal, and can’t process it appropriately, the result is an inability to generate typical motor and behavior responses.

…appropriate motor and behavior responses…
"Appropriate" here refers to the assumed way a child should respond -- if something is too loud, they should cover their ears; if something is quiet, they shouldn't complain that it is too loud. The word ‘motor’ refers to a muscle-based response -- how your body moves as a result of the information from the brain. ‘Behavior’ is how the child continues to respond (over- or under-reactions).

I want to pause here to be sure everyone understands there are three types of Sensory Processing Difficulties: Type I; Sensory Modulation Disorder, Type II; Sensory Based Motor Disorder and Type III; Sensory Discrimination Disorder. For the purpose of this post, which is simple understanding of SPD and communicating what SPD is as a way to spread awareness and understanding for our children, I am not going to go into their definitions.

The analogy I find most helpful when discussing SPD with others is from the SPDF’s website:
“A. Jean Ayres, PhD likened SPD to a neurological ‘traffic jam’ that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.”
Are you familiar with A. Jean Ayres? She is credited as being the pioneer for sensory processing, dating back to the 1960’s. Her work is the foundation for current research and the modern understanding of SPD.

Now, on to how you and I can actually use these definitions for something useful: A 30 second sound bite. This is what I use most often when talking to people with short attention spans, or when I am being interviewed on the radio or television for a two-three minute spot

A "sound bite" definition is also helpful at the grocery store when my son’s need to touch everything in the aisle results in near-disaster or when he insists on swinging from the railings at the checkout counter. Or, at the playground, when he seems to be consumed with pushing down some sweet and small little girl simply because she is too close to him, or even at my home while celebrating some holiday where my son is wound up like a top and crashing into everyone -- head first into their behinds -- while giggling nonstop.  Like me, I trust you will find many uses for the 30 second sound bite:
“Sensory Processing Disorder is a neurological disorder that is like a virtual traffic jam in the brain. The information coming in from all seven senses is misinterpreted which causes my child to often act inappropriately.”
The key points that are important to communicate when talking to someone about SPD are:
  1. SPD is a neurological condition, not a behavior issue
  2. There are seven senses that send information to the brain, the central processing center
  3. The brain misinterprets information coming in via these seven senses so that outgoing messages translate into unexpected/atypical behaviors
  4. These misinterpretations and unusual outgoing messages cause my child to act the way s/he does
I feel when I cover these four areas, I am most likely to accomplish my two main goals when talking to anyone:
  1. Help them understand my child and his behavior
  2. Spread SPD awareness
I hope that you find this information helpful for both your practical understanding of what Sensory Processing Disorder is, and so you can be another person who can help me educate the intensely mis-informed, however well-intentioned, people out there. Our kids need to be understood, and that can't happen without solid accurate information people can use. Here's to our SPD kiddos and spreading the word!

For more information on Sensory Processing Disorder I recommend the following books: 

Tuesday, January 11, 2011

Carol Greenburg Joins as TPGA Editor

We are so pleased to announce an addition to the editorial team at The Thinking Person's Guide to Autism; Carol A. Greenburg will join our efforts here as an additional resource and editor. We are honored to have her rich experience and important perspective as part of our team. 

We're thrilled she was able to add TPGA to her very active life, and our community is lucky to have such a great advocate.

Please join us in welcoming Carol.

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Carol Greenburg, executive director of Brooklyn Special Needs Consulting, is  a special education consultant and lay advocate in private practice serving the five boroughs of NYC and beyond. Her unique perspective as an adult with Aspergers Syndrome and as the mother of a severely language-delayed  autistic child, informs all of her work. In September, she was appointed the East Coast Regional Director of Autism Women's Network (www.autismwomensnetwork.com) A frequent speaker at National Conferences and area universities, parent support groups and community based organizations, she is a member in good standing of Council of Parents Attorneys and Advocates (COPAA) Carol lives in Brooklyn with two humans: her magnificent husband and son, as well as  two cats  (Which species outranks which should be obvious to those in  similar position.)