Blog maintenance (mostly) complete

Back in January I started the process of remodeling 29 Marbles, and today I announce the completion of that remodeling (to the extent that any blog is ever really complete). A couple of things you will likely notice:

• 29 Marbles has moved from its home on Blogger its own address at http://autism.gbrettmiller.com, and I've switched from Blogger to WordPress. I did this for several reasons, but mostly I was taking my own advice to "own my data".
  
• The feed for 29 Marbles is still http://feeds.feedburner.com/29Marbles, so you should not lose your subscription. (I think you may have received a feed "refresh" of the last few posts, but that should be OK.)
  
• The left hand column is for information related directly to 29 Marbles, such as the search function, feed subscription, and category lists.
• The right hand column includes feeds from and links to other autism related resources. Although I definitely have my own opinion about certain things, I also think it is important to see others' views. That's why I've included feeds to the Autism Hub and Age of Autism, along with links to blogs by parents and autistics from I expect that this side will continue to grow.

I hope you'll continue to read 29 Marbles and offer the great comments and discussions that arise from the very important topic of autism, what it means, and where we're going. See you on April 2.

aaaaarrrrrrrrggggggggghhhhhhhhhh!!!!!!!!!!

Blind faith

When was the last time you changed your mind about something related to autism? If you read back through my nearly three years of posts here you'll see that my own thoughts on the matter have fluctuated quite a bit. (Good thing I'm not a politician!). It's not that I have trouble making up my mind, it's just that I seem to learn something new everyday that influences my opinions.

In a post entitled Nestor Lopez-Duran Ph.D on Autism, Science and Faith-Based Advocacy, Autism dad Harold Doherty, author of Facing Autism in New Brunswick, references the following comments from Lopez-Duran:

what I believe doesn’t really matter, because “beliefs” rapidly turn into blind faith, even amongst scientists. Instead, good science only occurs when positions are flexible and reflective only of the status of the research (data) at any given time

Nestor L. Lopez-Duran Ph.D., Translating Autism, About Science and faith-based advocacy

Doherty goes on to provide his own thoughts:

Many issues such as the mercury-autism, vaccine-autism, genetics-environment arguments in autism discussions purport to revolve around science but often depart from the science and embrace the faith-based advocacy referenced by Dr. Lopez-Duran. To the great detriment of anyone with an interest in understanding the nature and causes of autism.

It is very difficult to maintain this kind of cold objectivity when the subject in question is your own child. But if we, as a society, ever want to get anywhere on these questions (assuming there is somewhere to get to), this is an important lesson to keep in mind.

On a completely separate note, I will be taking a short break from posting here. You may still, however, see my name pop up in comments of other blogs. I plan to return on April 2, not coincidentally World Autism Awareness Day.

Autism and New Jersey law enforcement

Over the weekend, Kristina Chew wrote about yet another tasing of an autistic teenager, and mentions a bill in New Jersey to promote autism training for first responders. While that bill makes its way through the New Jersey state legislature, first responders in Hillsborough, NJ are taking the initiative getting the training for themselves.

From Cops learn about autism to help prevent tragedy:

With more than 1,200 children and adults diagnosed with autism in the township -- and thousands more in neighboring communities -- Hillsborough police officers are reaching out to better serve those families during serious law-enforcement situations.

Hillsborough police Chief Paul Kaminsky recently participated in a four-hour seminar, "Autism Shield Program for Autism Recognition and Response." Its goal: To educate police officers and first-responders with an awareness and understanding of autism and how to teach and live with those affected, said Gary Weitzen, executive director of Parents of Autistic Children, also known as POAC.

Some thoughts from Chief Kaminsky and what his department is trying to do:

"All of our officers (there are 56 law-enforcement officers in the Hillsborough Police Department) have been trained concerning identifying and dealing with individuals with autism," Kaminsky said. "With autism being a part of our community and school system, we thought it was important that all our officers be thoroughly trained with the recognition and proper response with people with autism."

As a result, Hillsborough's police department recently has developed an Emergency Data Information base, which allows parents or guardians of special-needs children (and adults) to voluntarily complete a data sheet and return it to the police department.

The Emergency Data Sheet then provides law-enforcement officers with "essential information" -- such as basic identifying information; emergency contact information; means of communication; best way to interact; specific fears or concerns the person might have when approached; sensory or medical issues; and attractions.

If you haven't already, you should think about giving your local PD and FD a call and see what they are doing in this regard, and what you can do to help.

The Autoimmune Epidemic

While wandering the aisles in the local Borders book store, I saw Donna Nakazawa's new book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope. This description is from the book's official site:

Multiple sclerosis, lupus, Type 1 diabetes, rheumatoid arthritis, and nearly a hundred other chronic autoimmune illnesses are part of this devastating epidemic, in which the human body, acting on misread signals, literally begins to destroy itself. Alarmingly, the occurrence of many of these diseases has more than doubled in the last three decades, signaling a disturbing trend that can be directly tied to environmental factors in everyday modern life—including our daily exposure to a dizzying array of toxic chemicals.

With the conversation around a recent post fresh in my mind, I was drawn to the book to see what the author had to say about autism in the context of this autoimmune epidemic. There is one section, consisting of two pages, where she mentions the possible relationship of autoimmune issues, vaccines, and heavy metals (specifically mercury in the form of thimerosol) to autism. I don't recall the specific wording, but she basically left it as, "We'll have to wait and see what comes of the research."

Has anyone had a chance to read this book yet? Any thoughts?

Indulge your kid's passion, and build on their strengths

Consider this opening paragraph from the book Strengths Finder 2.0:

At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don't have natural talent with numbers, you're still forced to spend time in that area to attain a degree. If you're not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.

Any autism parent - any parent, for that matter - will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not. But that doesn't mean that is what we should be doing.

The following originally appeared here in February 2006.

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Indulge your (kid's) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys 'eat, sleep and breathe' football and people seem to think that if someone doesn't, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn't shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.
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The power of pop culture (redux)

A lot is being said about the pilot episode of ABC's new legal drama Eli Stone, in which the title character successfully sues a vaccine manufacturer on behalf of a family who believes their son's autism was caused by the vaccine (or, more accurately, an extra substance in the vaccine). Instead of discussing this show in particular, I decided to re-post this from last February. (The bold passages toward the end of the post were added for this re-post.)
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I will be the first to admit that I am a huge consumer of pop culture. I like to watch good TV (no, it's not an oxymoron) and film, I keep up with the latest in music (yes, some of it is awful), love video games, and read the occasional novel (though most of my reading these days is non-fiction). It comes through every now and then, like in my October post "Every soul is perfect" - Is there autism in heaven? (Redux), a reflection on how autism was treated on the CBS show Ghost Whisperer.

In response to that post, Ian Parker submitted the following:

Um, regarding heaven and 'perfect souls', I would hope that people do not determine their religious beliefs based on the pseudo-religious-philosophical musings of the writers of Ghost Whisperer. At least take the time to consider what Homer has to say before coming to any final decision on such weighty matters.

I share Ian's hope that people are smarter than that, and am doing my part by helping my sons understand what they consume in a smart way, I am a bit of a pessimist when it comes to actually thinking this is the case (a rare instance of a glass-half-empty feeling on my part).

For good or ill, pop-culture is a driving force in many (most?) people's perception of the world and their actions in the world. Because of that one episode of Ghost Whisperer, I would venture a guess that many people's perceptions of autism now include one of "imperfection" here on Earth, the image of a "lost soul" trapped inside an uncooperative body.

Why am I re-hashing this, you may ask. These thoughts came to mind as I came toward the end of Roy Grinker's new book, Unstrange Minds. In it, Grinker relates the story of how a popular film in Korea has helped reshape Korean attitudes about autism in a positive way. From the book (page 256-257, sorry for the long excerpt):

That month a low-budget Korean film entitled Malaton (spelled the way the main character pronounces the English work "marathon") was released. The film was based loosely on the real-life story of a young runner name Bae Hyong-Jin. Bae worked part-time on an assembly line in a tool factory when, at the age of seventeen, he ran a marathon in Chuncheon, Korea, in 2 hours 57 minutes. While not anywhere near elite runner times, which are under 2 hours 8 minutes, Bae's time was enough to earn him national recognition. Why? Because Bae Hyong-Jin has autism.

But the film is not about running. It's about the complexity of autism as a disorder and the problems people with autism confront in their family and social lives. it is one of the most realistic and compelling cinematic representations of autism that I've ever seen. The film was made after the Korean media began to publish stories about people with autism. The media had begun to publish the stories because parents, informed by the Internet and the international media, started to talk about autism in public.

Within one month after its release, more that 10 percent of the Korean population had seen the movie, and it was the second-largest moneymaker in the Korean film industry in 2005. Largely as a consequence of the film, millions of Koreans have a least a basic understanding of autism. On web site chat boards, disability rights advocates, parents, and educators in Korea are claiming that more diagnoses are being made, that people are more willing to bring their children with autism out in public, and that educators are more willing to accommodate children with autism in their classrooms. No one knows whether these changes will last, but optimism is sweeping the country. Parents of children with developmental problems think that their children may have brighter future than they previously imagined.

While autism is much more public in the US than it is in Korea, there is still a lot of ignorance of what exactly autism is, what it means, how it should be handled, etc. Any news story, TV show, or film that deals with the topic is absorbed by a curious public. And, in the absence of any other information (that doesn't require actually going out and finding it), what people see from these sources is what they will believe, what they will think is the truth.

What if the film the Koreans had seen were Autism Every Day? Their pre-existing stereotypes would have been confirmed. Here in the US, what if Autism Speaks had had the budget to put up a couple of spots during the Super Bowl, with the largest single TV audience in history? What if NBC had broadcast the Super Bowl?

As much as we may wish it were not so, we can't ignore the power of pop-culture and the influence it has had, and will continue to have, on the public perception of autism.
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Autism and law enforcement

I've written about autism and law enforcement before, but in a time when it is becoming increasingly dangerous to be different it is worth mentioning again. The catalyst for this particular post is the NY Times article Helping Police Officers Understand Autism, which talks about the ongoing efforts of Dennis Debbaudt (who is an autism dad and, as it turns out, also provided the inspiration for my previous post on the topic).

Some key points from the article:

• People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001.
• [W]hen Mr. Debbaudt asked whether any of the police officers, from departments throughout New Jersey, had received training on autism, either at police academies or on the job, only a few raised their hands.
• Mr. Debbaudt said he had heard of 6 to 12 cases each year in which people with autism are harmed, hit with a stun gun or killed by law enforcement officials. He cited the case of Calvin Champion Jr., a 32-year-old man with autism who died in 2000 after Nashville police officers used pepper spray on him and subdued him.
• “We’ve heard from families as well as from professionals that they just need more instruction, certainly in terms of first responders understanding that a person with autism may not respond appropriately or may not respond at all when given a command,” she said.
• A bill cosponsored by [NJ] State Senator Loretta Weinberg would require autism awareness programs statewide for emergency medical technicians, police officers and firefighters. The bill was passed by the Assembly in March, and awaits action in the State Senate.

That last bullet sounds like a good idea that should be spread across the country to every state. (I'm going to see what, if anything, is being done here in Missouri.)

If you are the parent or caregiver of an autistic person, or if you work in law enforcement, you owe it to your self to check out Debbaudt's sites: Autism Risk and Safety Management and Police and Autism - Avoiding Unfortunate Situations.

The ideology and partisanship of autism

In US politics, we've got Republicans and Democrats, also known as the Conservatives and the Liberals. (Please feel free to substitute the two main political parties from your country if you are not from the US.) I don't know if the following is accurate, but I remember hearing it somewhere in the seemingly constant barrage of US election year news: 30% of the population is Republican, 30% Democrat, and 40% Independent. Kind of makes sense if you think about it in terms of the "bell curve" and normal distributions in a population.

I've come to think that the same may hold true in the world of autism ideology. I use the term ideology quite deliberately here. From dictionary.com, ideology is defined as:

• the body of doctrine, myth, belief, etc., that guides an individual, social movement, institution, class, or large group
• such a body of doctrine, myth, etc., with reference to some political and social plan along with the devices for putting it into operation

On the one hand, there is the ideology of neurodiversity, defined on wikipedia as:

...an idea that asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be tolerated and respected as any other human difference.^[1] The concept of neurodiversity is embraced by some autistic individuals and people with related conditions, who believe that autism is not a disorder, but a part of their identity, so that curing autistic people would be the same as destroying their original personalities.

On the other hand there is the ideology that believes that autism is indeed a disorder, an abnormality in development caused by various environmental insults to a fetus or young child that must be cured in those that are currently affected and prevented in the future. The most commonly blamed environmental cause is mercury in the form of the thimerosol preservative used in vaccines, and more generally the large number of vaccines now on the vaccination schedule for young children. (The term "curebie" is sometimes used to describe this position. Although there is not an official "curebie" site like there is for the neurodiversity movement, check out The Age of Autism for more info on this position.)

Just like in politics these two "parties" have within them a broad range of beliefs, from the extreme ("all autism is mercury poisoning" and "society should accept and accommodate everyone, no matter how different") to the moderate ("we need to make society aware of the special needs of our autistic kids - and adults - and help those kids and adults make their way in the society to which they belong"). And, again like in politics, you have that overlapping area where the moderates of the opposing parties seem to be more like each other than the extreme element of their own party. (You may have noticed that I only gave one example of a moderate view, instead of separate ones for each party.) It is in this middle, the meeting point between the moderates of the two parties that you find the independents.

If you've read this blog for a while, you know that I fall somewhat in the middle, though I lean a bit more toward the neurodiversity side. But sometimes I get very frustrated at the whole discussion, the absolute statements from both parties that leave no room for deviation from the party line. I believe that this can be dangerous in politics, I also believe it to be dangerous in our efforts to understand autism and its affects on society. And at times, I feel like just dropping out of the discussion altogether because it just seems to be the same things over and over again.

But then I'll come across something like ...there of necessity will be much arguing from Dave Snowden of Cognitive Edge that makes me remember why I continue to write here:

If something matters, it is worth arguing about; consensus is for the ordinary and inconsequential things of life. Of course it does need good [wo]men if argument is not to degenerate into bitter polemic. Exploring ideas, supporting a position you do not necessarily believe in to test an argument, taking a contrary view for the sake of argument are all mechanisms by which human knowledge can advance.

I have seen the discussion about autism "degenerate into bitter polemic" all too often, and would like to think that I am one of the "good men" that help advance our collective knowledge about autism and what to do about it. I'm not much for New Year's resolutions, but for this year I resolve to continue the discussion, stir the pot, and keep the arguments as honest as I can.

Autism and God

Occasionally I have posted on the topic of autism and religion. These have been very general thoughts about how the Church, the religious, and God (whichever may be yours) view autism and autistics.

Ginger Taylor, on the other hand, has written an in-depth discussion of autism from a Christian point of view in a series of posts she calls Autism in God's Economy. Originally posted last spring during Autism Awareness Month, she has re-posted them for the Christmas season.

Here's how Ginger describes the series:

Because so much is at stake, the autism discussion and debate grows louder and more fevered, often making it difficult for those involved to really take in various perspectives. Even when we do, they are all still flawed human perspectives. Even the best, brightest, wisest and most experienced of us do not have the whole story.

But God does.

So in “Autism in God’s Economy” over the next six days I will discuss a few things that the Bible tells us about God’s perspective on those with Autism and on the rest of us. This series is predicated on the deity of Christ and the inerrancy of Scripture, which may be controversial ideas to some of my regular visitors. If they are to you, I invite you to read on none the less, and take a look at what God of the Bible says. If you are a professing Christian, then this is an important series for you to read no matter how autism affects you.

The series includes, as Ginger mentions, six parts:

The Least of These - In God’s economy, the weak, the marginalized, the disenfranchised, the overlooked, the voiceless, the vulnerable, the sick, the oppressed, the grieving, the bullied, the exhausted, and those at the end of their rope are the ones who get into the VIP section. They are the ones who gain the attention and compassion of the God of the Universe.

Those with Autism - What Matthew 25 means to you whose autism has allowed you to be mistreated is profound. It means that not only does The God of the Universe see what happens to you, He stands behind you at all times taking careful note of all your interactions with others. He records who victimizes you, who ignores you and who works their butt off to get to know you give you what you need.

Parents of Autistic Children - Once you become the parent of a disabled child, you begin to see what that ‘blessing’ really means in concrete terms, because one of the first things that happens to you, in your early grief, is that you become grounded. All of the trivial distractions, the petty rivalries, the BS ego trips, the vain ambitions and the frivolities of life suddenly become very unimportant. The crap in your life starts to fall away and it is replaced by seriousness about things of true value.

Friends and Family - It is their innocence and vulnerability that God stands behinds and uses to judge those who come into their sphere of influence. It is precisely because they are so easy to dismiss and mistreat, that God watches closely to see which of us have extracted ourselves from our own self-centeredness and selfish ambitions to notice someone who is need and to bear their burden with them.

Those in Power over Those with Autism - If you have taken responsibility for any part of the life of someone with autism, or even if that responsibility has been thrust upon you, take this time to measure yourself. Have you lived up to the responsibilities that you have been given to the innocent and vulnerable lives that Jesus has chosen to represent Him for the purposes of His judgment in his absence?

For All of Us Who Have Failed in Our Duty - When those of us with autistic people in our lives take a hard, honest look at ourselves, we realize the question is not have we failed them, it is how often and how big have we failed them.

As fellow autism dad Wade Rankin says in his post about Ginger's series, "For anyone who has an interest in the spiritual side of this autism thing, or who may have questions about reconciling the notion of a benevolent God with the autism epidemic, it makes for good reading." Make sure you check out the comments discussion between Ginger and Jonathon for even more on the latter.

Autism book clubs on Shelfari.com

One of the various reasons I finally got around to posting my review of Portia Iverson's Strange Son was my signing up for an account at Shelfari.com, a social networking site to connect those who still engage in the fading activity of reading. As I was adding books to my shelf I wanted to add a review of at least one book, so I dusted off that review and posted it to Shelfari, as well as here (where it would, admittedly, reach a bit larger audience).

One of the other things that Shelfari provides is the ability to create groups, what seem to me to essentially be a virtual book club. I created one, Books by Autism Parents and Autistics, to provide a forum to discuss, well, books by autism parents and autistics. So far, the group is just me. I'd love to have some company. (hint hint ;-)

On a side note, I understand that there are several different sites for managing a book shelf and that converting from one to another is a bit of a pain. I actually went through this when switching from iRead within Facebook to Shelfari. (I wrote a bit about the myriad options, and headaches they cause (for me, at least) in Time out, please? last summer.) If you don't want to switch your entire shelf over to Shelfari, perhaps just come on over for the group discussion.

Hope to see you there.

A tale of two mothers

I wrote the early drafts of this review several months ago, when I first read the book Strange Son. For various reasons, I never completed the review. And for various other reasons, I finally have. So, here it is.
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Although I’m glad that I read Strange Son, I can’t say that I ‘liked’ or ‘enjoyed’ it. On starting the book, I gained an almost instant dislike for Iverson, or at least the Portia Iverson depicted in the book, that made it nearly impossible for me to read more than a few pages at a time.

More than just a personal dislike, I found her attitudes towards other people, especially autistics and most especially her own autistic son, repugnant. I almost gave up trying to get through it several times (my wife stopped at page 26, it angered her so much), but I did eventually make it to the end.

Iverson, co-founder of the Cure Autism Now (CAN) foundation, and her son, Dov, are one of the two mother/son pairs of the title. The other mother and son are Soma and Tito Mukhopadyay. Iverson first learns of Tito while attending a conference she had organized for CAN, as she describes in the opening of the book:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. ... There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?

The bulk of the book describes Iverson’s efforts to answer that question. The first step was to get the Mukhopadyay’s from India to the United States so that Iverson could have Tito studied by various medical, neurological, and behavioral experts. The book is replete with stories of Iverson taking the two around the country to be seen by various specialists, meeting with limited success at many. These little vignettes provide some interesting insight into what the medical profession apparently thinks (at least thought, since most of this happens from 1999 – 2003) about autism. And it is not pretty. “He can communicate? Then he’s not autistic” seems to have been a very common reaction, as was, “His mother must be somehow signalling him with what to type.”

Throughout the book, we (the reader) get to know Tito and his mother a bit.

In a nutshell, Soma changed her role as parent, from the ‘typical’ mother that acts as a guide for her child to dedicating herself to a mother working directly with her son to help him find his way in the world. She helped Tito understand the world around him, and helped him learn how to communicate – quite beautifully – through his writing.

Though the relationship becomes somewhat strained as time goes on, especially as Soma begins working more with other kids, the love between mother and son is evident and never in doubt, at least not in my mind. (Iverson’s depiction of how Soma treats Tito is reminiscent of how a person would treat a pet dog they were trying to tame; based on the rest of the book, I think this is probably more a reflection of Iverson’s attitudes towards autistics than it is an indictment against Soma.)

To me, Soma and Tito’s story was the most important of the book, the story that I really wanted to know more about. It was the story of a parent reaching out to her son, accepting him for who he was and working with that. Unfortunately, their story comes across as a sub-plot to the larger story of Iverson’s devotion to “finding treatment and a cure for autism.”

In many ways, Iverson’s description of her, and her husband’s, reaction during the period immediately preceding and following the autism diagnosis will be familiar to many parents of autistic children. Confusion (What is autism?). Guilt (What caused it? Could I have prevented it?). Despair (Can I cure it?). Embarrassment (I don’t want anyone to know. What will people think of me?) At this point, there are many paths a parent could follow. Soma followed one path with Tito; Iverson chose a very different path.

Where Soma changed her role as a parent and dedicated herself to Tito, Iverson essentially abandons her role as parent and dedicates herself, not to Dov, but to fixing Dov.

The events in the book take place in the late ‘90s and early ‘00s. Sadly, things probably haven’t changed much in the past few years. (I’ve hear that evidence of this can be found in Jenny McCarthy’s recent book about her autistic son, but I’ve not been able to get myself to read it.)

Autism is a Trait

This is the third of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

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Driving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, "Autism is a trait, not a debilitation." Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: "Autism is a trait, not a debilitation."

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

The article also gives a bit of bit of Tyrin's history and what he's up to today (besides being a "celebrity"):

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he's a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

"A lot of the stuff I planned is coming true and I'm speechless that it is all happening," he said. "I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)"

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

"Without them, I would be lost," he said. "I really wouldn't be in a position to go to college right now."

He is learning to live on his own for the first time, something that he sometimes finds difficult.

"But I'm learning, it's tough, but I'm trying to adjust to living on my own," Rencher said. "One of the things my family has taught me is perseverance, and I do that every day."

I love to see "good news" stories about autism, and this is one of the "goodest" I've seen in a while: it shows an autistic adult making his way in the world, it shows that an autistic person's dreams and life aspirations are just like the rest of ours, and it shows an organization dedicated to helping people make their way in the world AS THEY ARE instead of trying to fundamentally change them.

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Original comments:

#

AB | aoskoli.blogspot.com

That’s amazing. A mainstream organization like the United Way gets it right. That is so enormously encouraging.

Oct 6, 11:43 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Christschool |

If anyone is able to find the link to the United Way Campaign with the slogan mentioned, please contact me as I would love to make a video of this. I tried the wayback machine with the broken link but that didn’t work.

Oct 7, 12:17 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Ms. Clark |

Christschool, I don’t know if this was what you had in mind.

http://www.stl.unitedway.org/tyrin.aspx

http://www.stl.unitedway.org/logos.aspx

Oct 7, 12:52 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Ha! I almost blogged about this myself when I saw it. It is indeed a good thing, and I’m going to drop the local United Way a note with my donation this year.

I had to read it twice over, I was so surprised. An autistic adult going to college and getting real world training and experience. What’s not to like about that?

The only link that I found about this on the United Way site was here. I’ve seen the video that goes with this story once on TV, but couldn’t find the video on their site.

Joe

Oct 7, 12:53 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Ah! While I was cutting and pasting (incorrectly) Camille posted the link that I was going to.

Joe

Oct 7, 12:55 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Found it! Here’s the video that I saw:

http://www.stl.unitedway.org/2.....0_240.aspx

Oct 7, 1:24 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Ms. Clark |

Thanks, Club 166!

Oct 7, 2:12 AM — [ Edit | Delete | Unapprove | Approve | Spam
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suzanne | blogger.com/profile/02732095611947394379

Thanks for sharing this.

Oct 7, 3:19 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Kristina | autismvox.com

Hope to read more stories like this and not to feel surprised!

Oct 7, 5:20 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Luai_lashire | luai-lashire.deviantart.com

I don’t mean to belittle the united way campaign or the article, both of which are very good- but I really, really wish they hadn’t said “in spite of his autism”. It’s the only part of the article that I don’t like, which, compared to the rest of the media, is amazing. Like the other people here, I sincerely hope that this keeps going on and that we see more of this kind of thing! :)

Oct 7, 2:08 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Joseph | autismnaturalvariation.blogspot.com

Hopefully things like “in spite of his autism” will get phased out eventually. It’s really no different to saying “in spite of being black” or something of the sort.

Oct 7, 2:44 PM — [ Edit | Delete | Unapprove | Approve | Spam
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jypsy | therunman.blogspot.com

cached version of the link http://64.233.167.104/search?q.....=firefox-a

Oct 7, 4:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Gonzo |

Good point, Joseph.

Oct 7, 5:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
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cz |

If the United Way site is down:

http://www.stl.unitedway.org/2.....0_240.aspx

You can also see the video on You Tube:

http://www.youtube.com/watch?v=6yaTd4jGu48

Tyrin is the second story in the video.

Oct 7, 7:46 PM — [ Edit | Delete | Unapprove | Approve | Spam
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VAB | aoskoli.blogspot.com

In the spirit of letting people know when they are doing something I appreciate, I wrote to the media coordinator and thanked her. She wrote right back. Here is our email conversation.

———To: Carrie Zukoski
Subject: Autism is a trait – not a debilitation

Hi,

As a father of a child with autism, I would just like to say how much I
appreciate your publicity, featured here:
http://www.stl.unitedway.org/tyrin.aspx

which I heard about here: http://leftbrainrightbrain.co.uk/?p=687

These days, it is increasingly common to hear autism described as a horror when, in fact, it is as your publicity says, a trait and, in many respects, a very fine one. People need to understand that. Thank you for getting the message out.
——-
Thank you so much for your note. That really means a lot to us. And Tyrin is a great guy – it’s been fun to work with him through this!

I appreciate you sharing the link to the blog too. I will definitely share this with my co-workers.

Carrie

Oct 7, 8:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Elissa managingautism.com

We definitely need more good news stories

Oct 8, 11:03 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Kate Kromann stl.unitedway.org/tyrin.aspx

Good morning! Thanks for mentioning Tyrin’s article here. Unfortunately, you seem to have caught us during our Web site upgrade this past weekend! Tyrin’s story is indeed online, at this address now:
http://www.stl.unitedway.org/tyrin.aspx

The video is on YouTube, linked on CZ’s post above, and to watch it from our Web site, click the Harley photo on the left side of the page.

I think your point about “in spite of his autism” is a great one, Luai. We certainly made an effort in our stories not include phrases like that. But of course, we can’t control what they print in the media :-)

Thanks for blogging about this! Do you mind if we link to your site?

Kate Kromann
E-Communications Director
United Way of Greater St. Louis

Oct 8, 12:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Brett

Kate,

Please feel free to link to my post about Tyrin.

While I can’t really speak for the site as a whole, I don’t think there would be any objection from the Left Brain / Right Brain team if you linked to the site from the United Way’s site.

Brett

Oct 9, 1:38 PM — [ Edit | Delete | Unapprove | Approve | Spam

What autism is not

This is the second of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

- - -- --- -----

As I mentioned in my last post, I am currently reading Steven Pinker's latest, The Stuff of Thought, an interesting (so far) exploration of the role language plays in human nature. In preparing to make an argument at one point, he starts off by saying the following:

To truly understand what something is you must understand what it is not. (His emphasis.)

This, of course, got me thinking about what autism is not. (It seems I can't read a book, or what a movie or TV show without finding some sort of connection to my thoughts about autism!) Here's a quick list, I"m sure I'll come up with more:

What autism is not:

• Devastation
• Train Wreck
• End of the world
• Caused by mercury poisoning
• Purely environmental
• Purely genetic
• Caused by MMR (or any vaccine)
• A curse
• Punishment from God (whichever one may be yours)
• A disease that can be cured
• Easy to live with
• Easy to explain to friends and family
• Easy to explain to siblings of autistic child
• Easy to explain to the autistic child
• A reason to kill your child

I know there are more, many more, but this is what comes to mind tonight as I head off to bed. What do you think autism is not? (And please, if you disagree with one I've put here let me know.)

----- --- -- - -

Original comments:

1.

Tired and want to go to bed |

autism is not

...a reason to experiment on your child.

...a reason to reject all authority

...a reason to blanketly accept some alternative authority

Sep 25, 5:46 AM — [ Edit | Delete | Unapprove | Approve | Spam
2.

666sigma |

That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

Sep 25, 12:05 PM — [ Edit | Delete | Unapprove | Approve | Spam
3.

notmercury |

666stigma: “That’s a pretty good list except you have no proof (one way or the other) regarding vaccines.”

What sort of proof do you require?

Sep 25, 3:13 PM — [ Edit | Delete | Unapprove | Approve | Spam
4.

jon Mitchell |

as an autistic person i must disagree that autism is not a curse or a devestation. It has made my life difficult. Are you autistic, brett? If not, how can you know it is not a curse or a devestation

Sep 25, 3:30 PM — [ Edit | Delete | Unapprove | Approve | Spam
5.

Steve D | onedadsopinion.blogspot.com

Jon – I don’t want to put words into Brett’s mouth, but I think he is saying that autism itself is not experienced in a profoundly negative way (ie. ‘curse’, ‘devasatation’) by all autistic people, and that the media’s careless overuse of these terms leads many people to only focus on its most negative aspects. This is counterproductive to a healthy view of autism by society.

Notice that Brett’s list also states that
Autism is not … ‘Easy to live with’. This is an acknowledgment, in my view, of the difficulties an autistic individual experiences as a result of their differences.

Sep 25, 4:12 PM — [ Edit | Delete | Unapprove | Approve | Spam
6.

Uncle dave |

Whoa! Good point Jon.
I guess like everything else, it was written from a parental or loved one perspective rather than as a personal perspective on being the one with Autism.

Why isn’t there more perspective broadcast from the person with autism’s perspective?
There are lots of very high functioning (forgive me) individuals with autism out there that can more than adequately represent thier perspective as Jon has.
Clinical and diagnostic discussions are one thing , but I have only seen one nationally televised journalistic piece on autism from the afflicted persons perspective. TV piece was about a white female who looked to be about early 20’s appeared to be living on her own (probably assisted care of some sort), who communicated through text on the computer (could type like there is no tomorrow). Obvioulsy very high functioning, but once again, affected in a manner that greatly influenced her ability to communicate in a typical auditory and expressive manner. She discussed her perspective on communications, stimulas and how she viewed other people and world around her.
Very interesting…

Sep 25, 4:27 PM — [ Edit | Delete | Unapprove | Approve | Spam
7.

bullet |

Autism is not:

An excuse to pathologise every single little difference whilst at the same time denying help when people really need it.
The entire basis of a person.
Something that is wholly negative.
Something that is wholly positive.
Something that ensures everybody on the spectrum will behave in the same way, or that the way they behave is governed by their perceived functioning levels in various areas.

Sep 25, 4:55 PM — [ Edit | Delete | Unapprove | Approve | Spam
8.

np |

Most physicians will give you their OPINION and pose it as science.

Sep 25, 5:18 PM — [ Edit | Delete | Unapprove | Approve | Spam
9.

Joseph | joseph449008@hotmail.com | autismnaturalvariation.blogspot.com | IP: 190.10.205.17

That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

Would a phone survey that found autism to be more common among unvaccinated children than vaccinated ones be good enough? How about one that found unvaccinated girls to have a rate of autism 15 times higher than that found in prior phone surveys?

Sep 25, 5:50 PM — [ Edit | Delete | Unapprove | Approve | Spam
10.

Brett |

Jon,

You make some valid points, and no, I am not autistic but a parent of an autistic son. Uncle dave is correct that this was written primarily from a parent’s perspective.

I would be interested to hear from you, and other autistics, what you think autism is not.

Sep 25, 11:45 PM — [ Edit | Delete | Unapprove | Approve | Spam
11.

jon Mitchell | jonathans-stories.com
okay i will oblige:

Autism is not a different way of being or alternative life-style, a different culture, autism is not something to take joy in and be celebrated. It is not something that society can magically accommodate and just make it “all right”.

Sep 25, 11:56 PM — [ Edit | Delete | Unapprove | Approve | Spam
12.

Kev |

Autism is not ‘just’ one thing or another. I think Jon is right and I think Brett’s list is right too.

Uncle dave – if you head to The Autism Hub you will find several blogs that are run by autistic people.

Sep 26, 7:06 AM — [ Edit | Delete | Unapprove | Approve | Spam
13.

tracy |

please help i have 3 year old autistic son and all this confuses me on how to help him

Sep 26, 3:38 PM — [ Edit | Delete | Unapprove | Approve | Spam
14.

Joseph | autismnaturalvariation.blogspot.com
Autism is not something that, if it were possible to take it away, would make everything “all right”. Hi Jon :)

tracy: You’ll get a lot of advise from a lot of people, some valid, some that can only be described as total claptrap. From my research, the most important advise I can give you is to never, ever, under any circumstances, place your child in an institution or a group home. This in itself won’t guarantee a good outcome, but it will at least make a good or fair outcome possible if not likely.

Sep 26, 3:54 PM — [ Edit | Delete | Unapprove | Approve | Spam
15.

bullet |

Hello Tracey :). My son is four, so pretty close to your son. If you like I could say some of the things that we’ve been doing to help him. Would that be alright?

Sep 26, 5:07 PM — [ Edit | Delete | Unapprove | Approve | Spam
16.

Ettina | geocities.com/ettinashee
Life isn’t ‘all right’. (But what life is not is a whole other matter.)

> The entire basis of a person.

I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.

Sep 27, 5:28 PM — [ Edit | Delete | Unapprove | Approve | Spam
17.

Ettina | geocities.com/ettinashee

My biggest advice for Tracey is – listen to your child. Even if he can’t talk, his behavior tells you things. Advice from others is only helpful inasmuch as it helps you better understand your child.

Sep 27, 5:30 PM — [ Edit | Delete | Unapprove | Approve | Spam
18.

bullet |

I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
“In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.”

I agree

Sep 27, 6:28 PM — [ Edit | Delete | Unapprove | Approve | Spam
19.

katia |

WHAT RIGHT DOES JENNY MCCARTHY HAVE TO GO AROUND AND SAY SHE HAS CURED HER SONS AUTISM
SHES SAYS IT HAS TO DO WITH DIET AND VACCINATIONS SHE’S NO DOCTOR …....

Sep 27, 11:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
20.

666sigma |

Joseph,

The GR study had obvious bias, but to draw your conclusion, you have to mix apples with oranges. Within their study, it showed autism was higher among the vaccinated.

It would be interesting to see a real study comparing the rates of autism (and other LD’s) among the vaccinated and the unvaccinated. GR study is flawed, but probably no more so than most of the so called “scientific” studies.

The CDC will avoid doing a study like this at all costs so I won’t be holding my breath waiting for one.

Sep 28, 9:41 AM — [ Edit | Delete | Unapprove | Approve | Spam
21.

Kev |

“Within their study, it showed autism was higher among the vaccinated.”

What study was this?

Sep 28, 10:51 AM — [ Edit | Delete | Unapprove | Approve | Spam
22.

Kev |

Oh wait Siggy – did you mean the GR phone poll? You – the self professed statistician – consider that a study do you?

The one that showed amongst older kids (as GR specified)

Ages 11-17, all kids:
Aspergers (unvaccinated): 1%
Aspergers (full vaccinated): 2%

Thats a difference of 1%.

PDD-NOS (unvaccinated): 1%
PDD-NOS (full vaccinated): 1%

autism (unvaccinated): 2%
autism (full vaccinated): 2%

ASD (unvaccinated): 3%
ASD (full vaccinated): 3%

Could you maybe lend your statistical expertise to explaining the statistical difference between 1% and 1%? Many thanks genius.

Sep 28, 11:01 AM — [ Edit | Delete | Unapprove | Approve | Spam
23.

Joseph | autismnaturalvariation.blogspot.com

Within their study, it showed autism was higher among the vaccinated.

Sigma, you obviously are unfamiliar with the results of the GR survey.

Sep 28, 12:20 PM — [ Edit | Delete | Unapprove | Approve | Spam

For what it''s worth, Einstein was...

...not autistic, at least not in my mind. Alas, I do not have an answer of my own to offer to the question of "Does it matter?" If you were to press me, I would say that it doesn't matter if it matters to me, it depends on whether or not it matters to you.

We all have our own point of view, and the answer to this question is - yes - relative to that point of view. Several people commented to my post Was Einstein autistic? Does it matter?. I encourage you to read those to get an idea of the answer from some diverse points of view (parents, autists, anonymous anti-autistic fundamentalists).

Was Einstein aloof? Yes. Emotionally distant? He could be, but wasn't always. Obsessive? I'd say passionate.

In the comments to that previous post, Joseph questioned Einstein's view toward his mentally ill son, Eduard. Here's what Isaacson had to say:

Eduard was unable to keep his balance. He began cutting classes and staying in his room. As he grew more troubled, Einstein's care and affection for him seemed to increase. There was a painful sweetness in his letters to his troubled son as he engaged with his ideas about psychology....

"Tete [Eduard's nickname] really has a lot of myself in him, but with him it seems more pronounced," Einstein conceded to [his first wife] Maric. "He's an interesting fellow, but things won't be easy for him."

It is true that Einstein did not see Eduard much as he grew older, and spent more and more time in institutions. As Isaacson puts it, Einstein "simply walled [Eduard] out when the relationship became too painful."

Sounds pretty normal (god, I hate that word) to me.

- - -- --- -----

Was Einstein autistic? Does it matter?

When I started reading Walter Isaacson's new biography of Albert Einstein, one of the first things I did was look in the index to see if autism or Asperger's was listed. No on both counts.

As I've read the book, I've found myself unconsciously evaluating the information presented through a diagnostic lens, trying to decide if he was indeed autistic. (See this Google search for a lot of discussion about the topic.)

I'll post my thoughts on the matter after I've finished the book and had the chance to digest it all, but in the meantime the following question came to mind:

Does it really matter if Einstein were autistic or not?

- - -- --- -----

Autism dads and IEPs

Last summer in the post "Men must attend IEP meetings", I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox's quote:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that 'men must attend meetings.' [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.

This post was brought back to mind for me by the blog post Gender Bias and Autism Dads at About.com:Autism -

Have you ever been treated like a second-rate member of an IEP or school meeting? Of course, right? But how about a second-rate parent? Have you ever had to say, “Umm, I’m here too” or “Hey, I’m also the parent” when the faculty (in my case, all or predominately female) ignore you completely and speak to the other parent without acknowledging your existence. Or even worse, have you ever endured the cruel “Dad” jokes, when these so-called professionals assume the mother does all of the dirty work (cooking, cleaning, shopping, taking care of the child, therapies, researching, fighting school districts, etc.) while you escape to the normalcy of your 9-5?

Fortunately, I've never had to endure this. The IEP teams we've worked with over the years have all been true professionals, treating us as equals in the process. If anything, most were pleased to see a father taking such an interest. (Of course, it has helped that through the years I've had jobs that gave me the flexibility to attend.)

To be honest, I've had a more difficult time trying to be an involved father in the PTO's of my non-autistic son. I seem to be the only father that the mothers had ever seen express an interest in being part of the PTO. This made for some interesting, sometimes uncomfortable initial meetings as they tried to figure me out. (It took me a while in one group to get them to stop calling me Mr. Miller!) Eventually, I became just one of the gals (in a manner of speaking ;-) ).

I know that, statistically speaking, mothers tend to be the primary care givers and the ones who must work through the IEP process and all that it entails. I also know that divorce rates among parents of autistic children are high, again with mothers typically (not always) the ones who must take care of the autistic child. *

But I'm here to tell you - and I know a few guys out there who will back me up - that autism dads are here, and we care, and we'll let our IEP teams know that we're here and we care if they try to ignore or marginalize us.

* On the subject of autism divorce, check out First National Program Launched to Combat Divorce Rates in Autism Community in Medical News Today and the Family First page on the NAA site.
= = == === =====

Event Notice: Autism 101 in St. Louis

Autism 101, a panel discussion about autism, will be at 7 p.m. April 18 at the Logos School, 9137 Old Bonhomme Road, Olivette. [Flyer (MS Word)]

The panel will explore topics such as relationship development intervention, applied behavioral analysis, neurology and sensory and feeding issues associated with autism.

Among speakers will be Dr. Garrett Burris of Child Neurology Associates, Colin Peeler of Behavior Solutions, Sheree Behrndt of Sensory Solutions and Sue Lindhorst of Speech Language Services.

Autism Speaks and Missouri Families for Effective Autism Treatment will sponsor the event.

Those who want to attend must register by Wednesday. To register, click on Upcoming Events on the website, www.autismwalk.org/stlouis. For more information, call 314-989-1003.

Autism awareness "elevator pitch"

In her recent post Autism Speaks Now, Kristina Chew contemplates the discrepancies between the types of autism research actually being conducted and the types of autism research that are covered in the media (my emphasis):

[A] study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.

Kristina goes on to ask how scientists (and, by extension, we) can overcome this issue (emphasis is again mine).

I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people’s beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role.

We have to remember, too, that last sentence applies not only to parents but to the media who would reach those parents. And also to the people who are trying to get these parents to give money to pursue a cause.

To reach these people, you need to be able to get your message across quickly, to the point, and convincingly. While it may be possible to get the point across convincingly using the scientific data as a basis, this will not likely be either quick or to the point.

What we need is an "autism awareness elevator pitch." Imagine you find yourself on the elevator with Oprah's producer (to follow the thread started by Kristina), and you have until you get to the top floor to explain why Oprah should dedicate an hour to your view of autism. Here's the quick sound byte that probably helped get Autism Speaks onto Oprah:

This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.

There a lot of ways to approach this (scientist, parent, autistic), I want to hear them all.

So..., what's your pitch?

"In My Language": The video that caught CNN's eye

The spark that caught CNN's eye about Amanda Baggs (see my last post if you don't know what I'm talking about) was her video "In My Language" posted on YouTube. While it is easy enough to just go to YouTube to watch it, I would like to share it here as well.



tagged as: Autism, Amanda Baggs, Anderson Cooper, Sanjay Gupta, Intelligence, Neurodiversity, Autism Advocacy