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.

Autism and the transition to adulthood – Whose life is it, anyway?

Today is an election day here in the U.S. The ability to participate in our government is one of the key transition points from adolescence to adulthood, but just one of many transitions that teens – and their parents – must make. For autistic teens, and their parents, this transition brings with it some unique challenges and considerations.

Over the past several years, I've written several pieces on this subject. In keeping with the spirit of the day and what it represents, it seems appropriate to repost this one.

I originally posted Whose life is it anyway? Thoughts on guardianship, autism, and growing old on 03 March 2006:

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As part of planning for the future, parents of autistic kids must consider many things. Key among them is this question of guardianship.

When a child in the United States turns 18 they are considered an adult, their own person. They can vote, they can enter into legally binding contracts, they can join the military (and if they are male they must
register with selective service), etc. In order to rescind this legal right, parents must petition the courts and establish alternative guardianship. Obviously, not a decision to be made lightly.

On the other end of the age spectrum, adult children often must make care decisions for their aging parents. Many times this results in these elderly parents living out their final days in a nursing home, with every aspect of their lives controlled by the administrators of the home. Again, not a decision to be made lightly. (I think we've all heard the horror stories.)

The film Almost Home, recently aired on PBS, talks about a different kind of way to run a nursing home.

ALMOST HOME offers an inside look at the lives of these residents, their families and those who care for them as each adjusts to the challenges of growing older. ALMOST HOME filmmakers Brad Lichtenstein and Lisa Gildehaus introduce couples bonded and divided by disability, children torn between caring for their dependent parents and their own families, nursing assistants doing difficult work for near-poverty wages and visionary nursing home director John George, who is committed to transforming his century-old hospital-like institution into a true home.

Under George's leadership, Saint John's On The Lake is reinventing its 135-year-old medical model of care (think hospital) with a social one (think home). His goal is to transform the way people see nursing homes—not as institutions of boredom and despair but as vibrant communities where residents live rich and fulfilling lives. To succeed, he will have to win over skeptical managers, resistant nurses, overworked and underpaid nursing assistants, complacent residents and often-overwhelmed family members.

The key change in my mind is that the residents here retain as much control as possible of their own lives. They can wake up when they want to, instead of the usual scheduled wake-ups. Meals are tailored as much as possible to what the residents desire, not a typical bland hospital menu. (If someone has lived a good 90 years, and wants some bacon for breakfast, they should be able to get bacon for breakfast!) They have a cocktail hour every Monday where *gasp* they can drink cocktails.

Whose life is it to live? It is the individual's, of course. But, as the parent of an autistic teenager, that is somewhat easier to say than to act on. Any thoughts from autistic adults (several of whom I've recently gained as readers) or parents of autistic adults that have already gone through this are greatly appreciated.

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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?

Not in my backyard: Vaccines, autism and acceptable losses

In her post The AAP vs. Eli Stone (January 2008), Ginger Taylor at Adventures in Autism tells the AAP that her son is not "an acceptable loss in the war against TREATABLE viruses" (emphasis hers). The steel trap that is my mind (ha!) remembered that Ginger had brought this up before when talking about vaccines. In Where I stand on vaccines (June 2005), Ginger wrote:

The CDC’s vaccine policy is based on the principle that the good done for the many outweighs the harm to the few. And that is fine if you are making vaccine policy for 300 million people. But I am not responsible for holding back another Rubella epidemic; I am responsible for two little boys who just may fall into that sliver of the population that the CDC considers an acceptable loss. (my emphasis)

An anonymous commenter responds:

YOU are not responsible, but you do share that responsibility with all of us parents. If enough parents assumed your attitude, pertussis, mennigitis, and perhaps even measles would make a deadly comeback. I'm not saying you must vaccinate, the risks/benefits must be evaluated carefully. But if you choose not to, please acknowledge dropping your share of responsibility for the good of all children for what it is - selfish. Please note that I do not consider selfish anything more than a decision taking only you or your children into account. It does not mean you are an all-bad person.

I've thought about this very thing quite often when looking at the vaccine question. Does any single parent have any responsibility to "hold back another Rubella epidemic?" I've come to the conclusion that no, they don't. Though the commenter takes great pains to say being selfish doesn't make Ginger a bad person, the fact that he had say that at all points to the general feeling that being selfish is bad.

But, and this is a big but, everything that everyone does is for selfish reasons. I've written about this before in the context of behavior in the world of business, but the general principal is the same. Every action that we take, or influence, or try to make happen, we do because we want a benefit for ourselves or someone we care about. The Founding Fathers of the US knew this fact, and they also realized that this is the only way it can be if the fundamental freedoms they believed in were to be realized. (This is also why you can't, and shouldn't, try to get rid of Congressional 'ear-marks' .)

The obvious pop culture reference here is Star Trek II: The Wrath of Khan. Spock was right that the needs of the many outweigh the needs of the few, but Captain Kirk was just as right - maybe more so, considering what happens later - in not accepting this "axiom" in this case.

The AAP, and others, have gone overboard over Eli Stone, if you ask me, but this is how it should be. I'd expect nothing less if the tables were turned and the proverbial shoe were on the other foot.

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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What would it take? (Or, Why the debate will never end)

Before you read the rest of this post, please take a moment (or, if you read as slow as I do, several moments) to read these two posts, by different authors, discussing the study Continuing Increases in Autism Reported to California’s Developmental Services System: Mercury in Retrograde and the accompanying essay Thimerosal Disappears but Autism Remains published in this month's Archives of General Psychiatry:

• Thimerosal Exposure Declines, Autism Rates Increase (Autism Vox)
• Making Sense of the California Autism Numbers (Age of Autism)

So, what do you think? Does the study prove anything? Disprove anything? If you believed before reading these posts that autism is caused primarily by thimerosal (or mercury in general), did reading these posts change your mind, or cause you to doubt that position? Conversely, if you believed before reading these posts that thimerosal / mercury is not a cause of autism, did reading these posts cause you to change your mind, or to question your beliefs?

On the Autism Blog at About.com, Lisa Jo Rudy hits the nail right on the head with this pessimistic (but unfortunately accurate) observation:

Knowing the autism community as I do, I find it hard to believe that these findings will change much of anything. Those who believe firmly that vaccines are NOT to blame for the rise in autism diagnoses will stand on these findings as proof positive of their claims. Meanwhile, those who believe firmly in the toxic nature of vaccines will continue to advocate for an end to required vaccinations - and for compensation for vaccine damage to their children.

In his article on Age of Autism, Mark Blaxill effectively quotes Karl Popper as a guide in his examination and acceptance of criticism to his theory:

He who gives up his theory too easily in the face of apparent refutations will never discover the possibilities inherent in his theory. There is room in science for debate: for attack and therefore also for defense...But do not give up your theories too easily--not, at any rate before you have critically examined your criticism.

But this then begs the question, at what point do you give up your theories. In discussing his conversion from atheism to theism (I believe Christianity, though he never comes out and says it) in his book There is a God, Antony Flew writes:

Now it often seems to people who are not atheists as if there is no conceivable piece of evidence that wold be admitted by apparently scientific-minded dogmatic atheists to be a sufficient reason for conceding "There might be a God after all." I therefore put to my former fellow-atheists the simple central question: "What would have to occur or to have occurred to constitute for you a reason to at least consider the existence of a superior Mind?"

Obviously, this question can go both ways, and can be applied to just about any partisan disagreement, including the one at hand. With that in mind, I'll rephrase the questions I asked above:

• If you believe that thimerosal is not a primary cause of autism, what would it take to convince you that it actually is?
• If you believe that thimerosal is the primary cause of autism, what would it take to convince you that is not?

Note: please don't respond with something along the lines of "nothing could make me change my mind because it is obvious that my belief is correct." If that it how you feel, then you don't have anything worthwhile to contribute to this conversation and I'd prefer it if you didn't clog up the comments.

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 the "complex social environment"

Mike Stanton's post Of mice and men and autistic fruit flies includes the following criticism of an autism related study using fruit flies:

But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.

My first thought was, if autism is a "complex social disorder" it is only because we live in a complex social environment. In the comments, Amanda disagrees with Mike that autism is a social disorder at all, and I think I agree with her.

True, autism is measured against the "norms" of the complex social environment in which we live, but the "condition" of autism exists independently of those norms. If those norms didn't exist, or if our social environment was different, those who are autistic in our world would still be autistic in this alternate world.

Mike's commentary also includes a passage with which I wholeheartedly agree:

They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world?

Kristina Chew also has some thoughts on the studies, and Mike's post, in her post Can Animals Have Autism?

The so-called autism epidemic is just a conspiracy theory. Or is it?

In The lure of the conspiracy theory (subscription required, full article here), author Patrick Leman discusses some thoughts on the nature of conspiracy theories and why people believe them (or don't). I learned of the article from the blog Schneier on Security, in which Schneier excerpts some key points.

From the perspective of an autism parent, and my discussions with others on the subject, this paragraph jumped out at me the most (emphasis is mine):

To appreciate why this form of reasoning is seductive, consider the alternative: major events having minor or mundane causes -- for example, the assassination of a president by a single, possibly mentally unstable, gunman, or the death of a princess because of a drunk driver. This presents us with a rather chaotic and unpredictable relationship between cause and effect. Instability makes most of us uncomfortable; we prefer to imagine we live in a predictable, safe world, so in a strange way, some conspiracy theories offer us accounts of events that allow us to retain a sense of safety and predictability.

Though I hesitate to make the comparison to the need for religion, believing in a conspiracy theory model for something like autism seems to fulfill much the same need in people: the need for life, and what happens in it, to have a meaning, if not a purpose.

A couple of other interesting paragraphs:

Other research has examined how the way we search for and evaluate evidence affects our belief systems. Numerous studies have shown that in general, people give greater attention to information that fits with their existing beliefs, a tendency called “confirmation bias”. Reasoning about conspiracy theories follows this pattern, as shown by research I carried out with Marco Cinnirella at the Royal Holloway University of London, which we presented at the British Psychological Society conference in 2005.

The study, which again involved giving volunteers fictional accounts of an assassination attempt, showed that conspiracy believers found new information to be more plausible if it was consistent with their beliefs. Moreover, believers considered that ambiguous or neutral information fitted better with the conspiracy explanation, while non-believers felt it fitted better with the non-conspiracy account. The same piece of evidence can be used by different people to support very different accounts of events.

This fits with the observation that conspiracy theories often mutate over time in light of new or contradicting evidence. So, for instance, if some new information appears to undermine a conspiracy theory, either the plot is changed to make it consistent with the new information, or the theorists question the legitimacy of the new information. Theorists often argue that those who present such information are themselves embroiled in the conspiracy. In fact, because of my research, I have been accused of being secretly in the pay of various western intelligence services (I promise, I haven’t seen a penny).

It is important to remember that anti-theorists show a similar bias: they will seek out and evaluate evidence in a way that fits with the official or anti-conspiracy account. So conspiracy theorists are not necessarily more closed-minded than anti-theorists. Rather, the theorist and anti-theorist tend to pursue their own lines of thought and are often subject to cognitive biases that prevent their impartial examination of alternative evidence.

How then can we predict who will become believers and non-believers? My hunch is that a large part of the explanation lies in how individuals form aspects of their social identities such as ethnicity, socioeconomic status and political beliefs. The reasoning and psychological biases that create believers or their opposites are fostered by social origins. For conspiracy believer and non-believer alike, there is a kind of truth out there. It’s just a rather different truth that each seeks.

Reading through this, I've come to understand better one of the reasons that I don't post as much as I used to, or participate in various autism related forums more. Most people have already set their opinions, and are not likely to change them based on anything I, or anyone else, has to say. I'm sure that I am as guilty of this as other people, though I do believe that my opinions and beliefs in this area are somewhat flexible.

I only have to look back at the early days of this blog to see how my opinions have changed. When was the last time your views on autism, its causes, its nature, and its future changed?

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.

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Has autistic intelligence been underestimated?

Has autistic intelligence been underestimated through the years? I think many of you know what my answer is going to be (YES! of course), but I actually have a scientific study that backs up that claim that I (and many others) have known all along.

I discovered the study, entitled The Level and Nature of Autistic Intelligence (available online through the journal Psychological Science, on the Autism pages of About.com in the article Once Again, the World Discovers That People with Autism are Bright but Different. There is also a discussion of the study on the Science Daily website.

The study was written by Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, and Laurent Mottron. Here's the abstract of the paper:

Autistics are presumed to be characterized by cognitive impairment, and their cognitive strengths (e.g., in Block Design performance) are frequently interpreted as low-level by-products of high-level deficits, not as direct manifestations of intelligence. Recent attempts to identify the neuroanatomical and neurofunctional signature of autism have been positioned on this universal, but untested, assumption. We therefore assessed a broad sample of 38 autistic children on the preeminent test of fluid intelligence, Raven's Progressive Matrices. Their scores were, on average, 30 percentile points, and in some cases more than 70 percentile points, higher than their scores on the Wechsler scales of intelligence. Typically developing control children showed no such discrepancy, and a similar contrast was observed when a sample of autistic adults was compared with a sample of nonautistic adults. We conclude that intelligence has been underestimated in autistics.

Unfortunately, you must be a member of the Association of Psychological Sciences to get the article from their website. Another option, the one I'm pursuing, is to get a copy from your local public library (or school library, if you are a student).

I should have it in a couple of weeks, I'll post more thoughts once I've actually read it.

Sun Tzu and the Art of the IEP`

As a young Army officer, I read Sun Tzu's Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu's demonstration of leadership ability using the Emperor's concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.

When you are ignorant of what the district's goals or resources are, but know your rights and your child's needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district's goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I'll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their "enemy." As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the "enemy"? According to Sun Tzu, both should expect to win. But both sides can't "win", can they?

To that I answer a resounding, "Yes, of course both sides can win." Wouldn't that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)
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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?

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Asperger's and video games

This is a slightly modified version of a post I made to my blog No Straight Lines.

I use SiteMeter on this and other sites to track visits (look in the bottom of the right column if you’ve missed it). It is interesting to see how many people visit the site, and where they come from (all over the world), but what fascinates me the most is the referrer log. I get the odd link from someone else’s blog or other site, but the vast majority of referrals to this blog come from search engine queries.

It is interesting to see what search terms people use that find my sites. Even more interesting are the other sites that those search terms turn up. For instance, a search for “video games and autism and gee” returned a link to my blog No Straight Lines, but also a link to Gaming and Students with Asperger’s Syndrome: A Literature Review:

As a teacher in the field of middle years education, I have observed a continual rising interest in video and online gaming by many of my students, regardless of gender and academic ability. In the past few years, I encountered students playing an online game set in a virtual environment (VE) called Runescape. My interest was especially piqued when I noticed students with special needs, especially those with Asperger’s Syndrome(AS) playing the game and exhibiting positive social and cognitive skills that he would rarely demonstrate in a traditional classroom environment. Students with AS were discussing the game with other classmates (and myself) in and outside the classroom. They were asking how to spell words and utilize a calculator in order to achieve objectives within the game. They were problem solving and surfing the web for online discussion groups associated with the game.

In this literature review, I will seek to answer the following questions: What educational learning principles and concepts are associated with online gaming? How do these aspects of gaming benefit students with AS? In turn, I will present a review of the latest research on the issues related to education and gaming, present an overall framework of the game Runescape, discuss some of the defining characteristics of AS, then explore how certain aspects of gaming benefit students with AS.

— Gaming and Students with Asperger's Syndrome: A Literature Review

A nice pulling together of several of my areas of interest. The Lit Review itself is well worth a read, and the bibliography provides even more.

Thought for the day - Living your own life

A consistent, recurring theme for parents of autistic children has long been, "You know your child best." While this is not always easy for parents with a new diagnosis to accept, or understand, those of us who have been doing this for a while recognize what it means.

Listen to the doctors, the teachers, the experts. Read whatever you can find. Try different approaches to helping you and your child. But in the end, do what YOU as the parent believe is best, based on your knowledge of your child. Specific programs - whether it be ABA, chelation, mainstreaming in school, etc - will never be successful if they are blindly implemented without your or your child's individual needs being used as part of the decision.

A while back I picked up Deng Ming-Dao's 365 Tao - Daily Meditations. As its name suggests, it has one Taoist meditation per day. I'm not a Taoist (I don't think), and came upon the book after reading another by Deng, Chronicles of Tao, itself a very interesting story. (To be honest, I'm not really sure if it is fiction or not - it is presented as a true story - but in the end it didn't really matter; it's a good book.) I have found that many of the meditations in the book are very useful and, indeed, practical. I've marked each of the pages with the appropriate date (there is a chart in the back of the book that does this, but I like having the dates on the page), and have referred to it off and on for many years now.

Yesterday's entry, Retrospective, resonated with me as I was thinking of those common themes of parenting, especially parenting an autistic child:

You could labor ten years under a master
Trying to discern whether the teachings are true.
But all you might learn is this:
One must live one's own life.

Too often today we try to live life like others expect us to, this is a nice reminder that our lives are our own, and that they are ours to live. Which brings to mind something I saw on a young man's t-shirt last weekend at a local Yugi-Oh tournament:

The only way to know who you are is to go somewhere you don't have to be anyone else.

Why don't more people understand this yet?

One of the dangers of being too close to a topic like autism and autism awareness is that you sometimes forget that not everyone has caught up with you in their perception of that issue. Even people you think should know better by now.

An example that recently struck me was how many people still don't realize that "low-functioning" autistics can be very intelligent.

In her new book Strange Son, author Portia Iverson describes her initial reaction to the idea of an intelligent "low-functioning" autistic:

“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?

This exchange between Iverson and Happe occurred in Spring 1999 and serves as the starting point of the story that Iverson tells in her book. Not to spoil the ending, but by the end of her story (circa 2003), Iverson comes to the conclusion that to me today seems so obvious: Tito is not one-in-a-million, he is not "his own disorder."

Fast forward several years to two days ago. From his blog, Dr. Sanjay Gupta of CNN describes a recent meeting he had with Amanda Baggs, author of the ballastexistenz blog:

Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Trying harder starts with getting the word out. But how to go about it? I'm glad that Dr. Gupta has written about Amanda, and that Anderson Cooper had her on his show last night (I've not seen it yet). Too much of the coverage of autism is doom and gloom, maybe this will help to get the word out to a few more people.

But I have the feeling it is going to be a long, hard trail, because even those that should know better by now obviously don't know yet. Dr. Gupta captures this problem well in his closing paragraph:

I am a neurosurgeon and Amanda Baggs opened my eyes about the world of autism.

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There is also a story about Amanda posted on CNN Health.
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Update: From Anderson Cooper's website on CNN, it looks like he may have more with Amanda on tonight's show (22 Feb 07).
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tagged as: Autism, Amanda Baggs, Anderson Cooper, Amanda Baggs, Intelligence

Diagnosis: Autism - nothing new on 60 minutes

A quick follow up to 29 Marbles: Autism on 60 Minutes - 18 Feb 07 . My first thoughts after watching the 60 Minutes piece Diagnosis: Autism on Sunday night was, "Wow, this was a non-event."

Maybe it's just me, and the fact that over the past year I've been soaking in just about every autism story, theory, etc and reading several autism related books, but the show didn't seem to shed any new light on anything.

Of course, if I were the parent of a recently diagnosed child, or (gasp) the parent of a 6-12 month old who wasn't responding when I called his name, it would have been a different story. But what exactly would I have learned?

Every child is unique

Yesterday, abfh wrote something that captures perfectly how I feel about being a parent - not just of an autistic son, but of both my kids (emphasis is mine):

Children are always different from their parents and from one another in a great many ways, and each child is uncharted territory. No one ever knows how well they can deal with parenting any child. It's always a matter of gaining experience on the job, observing how the child grows and learns, and loving the child enough to let the natural process of growth take place, unconstrained by the parents' needs and assumptions.

This has now found a place in my trusty notebook of things I want to have handy. If anyone asks me how I "deal" with parenting an autistic child, I'll simply show them this.

Autism on 60 Minutes - 18 Feb 07

I've already set the DVR to record this. Though the teaser article gives a little preview of what they'll talk about, I'll withold any comments until I've had a chance to watch it.

With no known cause or cure for autism yet, researchers are trying to detect the earliest signs of the disorder so they can begin treatment earlier, giving parents some hope against a condition the government now says affects about one in every 150 children.

60 Minutes correspondent Lesley Stahl reports on ongoing research this Sunday, Feb. 18, at 7 p.m. ET/PT.