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.

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?

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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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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And the verdict is...

... guilty on all counts.

While we wait for the verdict...

In May 2006, 3 year-old Katie McCarron was killed by her mother, Karen McCarron, who is on trial for the murder of her autistic daughter. The case is now with the jury, who have four options to choose from (guilty, not guilty, guilty but mentally ill and not guilty by reason of insanity) for each of the four counts McCarron faces. See Autism Vox for Kristina Chew's excellent coverage of the trial for more info.

I'm sure there will be plenty of analysis of the verdict once it comes in, the arguments in the case, and what it means to be autistic and the parent of an autistic child. But for now I'd like to repost something I put up in May 06, not long after Katie was killed. It was also around that time that I finally watched the Autism Speak's video, Autism Every Day.

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So what?

Ack!
Thbbbt!

That pretty much sums up my feelings over the past couple of weeks about autism news. I have the feeling this post is going to go long and wide, so consider yourself forewarned....

At last week's Senate confirmation hearings for President Bush's nominee for head of the CIA, GEN Michael Hayden was asked to comment on the value of 'targeted intelligence,' the process of gathering intelligence explicity supports a desired outcome. (If I remember correctly, it was asked by a Democratic Senator doing a bit of sneaky Bush-bashing.) GEN Hayden replied along the following lines - this is a paraphrase, I could not find an actual transcript:

I've got two great kids, teenagers. But if I wanted, I could put together a dossier on them that contained all the bad things they've ever done. This would be accurate, but would not tell the whole story. You would think these were the most rotten, evil kids on the planet. If all you are looking for, or expecting to see, is one aspect of a situation, then that is what you will get.

This exchange from the hearings kept popping into my mind as I read the many descriptions of the Autism Speaks video, Autism Every Day. I finally got around to watching that video today. Ack!! Thbbbt!!

This video is nothing if not targeted intelligence, the Autism Speaks equivalent of the 2003 State of the Union address and Secretary Powell's briefing to the UN on Iraq's weapons of mass destruction program. What is their goal? Well..., war of course. War on autism. But is this also a war on autistics? It's kind of hard to tell the difference.

About half way through the video, which to that point basically consists of a bunch autism parents - I should say autism MOTHERS - whining about how hard life is with autistic kids, I couldn't help think, "So what? Parenting is hard." In fact, I was going to write a bit about that, but Kev beat me to it:

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are far from the whole story.

Deja vu, anyone? (See the quote from GEN Hayden above.)

I was flabbergasted (to say the least) when one of the mothers in the video said that, except for the fact that she also had a non-autistic daughter, she would would have driven off the George Washington Bridge so her autistic daughter "wouldn't have to go to that school." Thbbbt!!! With the autistic daughter (8 or 9 years old) in the room with her. Ack! And then the non-autistic daughter said, "I wish I had a non-autistic sister." ...!!!... (words escape me here) Not I wish my sister weren't autistic, but I wish I had a different sister.

This of course leads into the story of the death of a 3 year old autistic girl at the hands of her mother. Much of the press, and most of the comments from the family and friends, seems to be along the lines of, "Poor woman, she was the mother of an autistic child and she just snapped. Please pray for her. It wasn't her fault."

Much of the whining (sorry, that's how it came across to this 13 year veteran of autism parenting) in the video was focused on how the autism negatively impacted the lives of the parents. "Sorry, I'd love to go get bagels with you, but I've got to go deal with my autistic child." "I couldn't keep the job I wanted." "This wasn't my choice. I'm not a therapist, I got drafted. I'm a parent of an autistic child."

Let me tell you a story.

A couple of days ago some friends watched their 6-year old son die, heard his last breath as he succumbed to terminal illness. About 3 weeks ago, their son's body began rejecting food from the tube. Nearly 6 months before that, he became unable to eat food (hence, the tube). For the past two years, he has been unable to move. An unbelievable amount of love and caring. Did they miss the things they could not do? Undoubtedly. Did it make their life hard? Yep. Did they whine about how miserable they were because of their sick child? Not a chance. Did they consider throwing him off a bridge? Puh-lease!

Life is hard. Parenting is hard. So what?
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As a rule I usually don't lash out at individuals or groups about their beliefs or actions, but this post was a rare exception to that rule. (So much so that I felt it necessary to apologize, kind of, in a follow on post.)

On vaccines and autism

Last week I asked the question: What would it take to change your mind? I figured I should probably think of an answer for myself, this post includes some thoughts from my contemplation. This is not a complete argument for or against anything that I haven't already stated, just some thoughts in process. Any thoughts of yours are certainly welcome.
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I don't believe that autism is mercury poisoning, I've said that before. As for the number / types of vaccines being a trigger (I don't believe it is a cause in the Newtonian sense), I've been thinking about it lately but haven't seen any data to help me make a my mind.

Along those lines, the Age of Autism (which is, I must note, very openly of the opinion that mercury in the form of thimerosol in vaccines and/or the number of vaccines given to kids is the primary cause of most autism) yesterday pointed to the 2008 pediatrics vaccination schedules (0-6 years and 6 years and over).

WOW!!

That was about all I could think when I looked at the schedule. The schedule in and of itself doesn't lead me to believe anything different than what I knew before, but it does give me an extra data point. The human immune system is an incredible, incredibly intelligent, incredibly complex system. (Though I'm sure there are many books specifically on the subject, The Genius Within includes a very description of how the process works.)

The challenge with a complex system (as opposed to a merely complicated system) is that the outcome of any given input to the system can not be predicted and that a specific cause for a measured outcome cannot be identified. From Dave Snowden (who thinks about complexity a lot):

• Complex systems can not be predicted, they are non-causal (taking cause in its normal Newtonian sense) in nature they evolve and the same thing will not happen again twice, we can predict aspects of the system and different aspects of time but never the outcome of the whole system
• The concept of a non-causal system is a very difficult one to grasp as the west abandoned the idea at the time of the Enlightenment (Vico and others were prophetic in arguing against this).
  
• A complex system can be simulated - which increases understanding but simulation should not (although it is often) confused with prediction
• We can understand starting conditions as a complex system evolves and we can influence their evolution if we focus on barriers and attractors (1st and 2nd order constraints) but not if we look at the end point (so attempting to predict makes things worse not better)
• Humans tend to premature convergence (seeing a pattern too quickly before it is stable) and also to retrospective coherence (implying past causality where there was none). Both of these tendencies are pervasive and dangerous

Which brings me to a very interesting dilemma:

• If autism (has a cause and) is indeed caused by an insult to the immune system, we can not predict which vaccine or combination of vaccines will cause it; and,
  
• Once autism is caused in an individual we can not look back through their vaccination history to determine which vaccine it was that did the causing.

And this doesn't even bring into play the complexity of the interaction between the immune system and the rest of the body or the role of genetics, and genetic predisposition.
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Rationality and emotions

How much does rational thinking influence your opinion on something? How about emotional thinking? Since this is a blog (mostly) about autism, you may think that is leading up to something in the vaccine/autism debate, but in this case I'm talking about a technology intended to help law enforcement catch criminals.

From the Wired.com article A New DNA Test Can ID a Suspect's Race, but Police Won't Touch It:

Frudakis' test is called DNAWitness. It examines DNA from 176 locations along the genome. Particular sequences at these points are found primarily in people of African heritage, others mainly in people of Indo-European, Native American, or South Asian descent. No one sequence can perfectly identify a person's origin. But by looking at scores of markers, Frudakis says he can predict ancestry with a tiny margin of error.

DNAWitness has been used nationally in nearly 200 criminal investigations. In several, the science played a crucial role in narrowing the suspect field, ultimately leading to an arrest. But its success hasn't made the technology popular with law enforcement.

"Once we start talking about predicting racial background from genetics, it's not much of a leap to talking about how people perform based on their DNA — why they committed that rape or stole that car or scored higher on that IQ test," says Troy Duster, former president of the American Sociological Association.

"This is analyzing data derived from a crime scene," Frudakis counters. "It's just a way for police to narrow down their suspect lists." But his position, rational as it may be, is no match for the emotions that surface with any pairing of race and crime.

Tony Clayton, a black man and a prosecutor who tried one of the Baton Rouge murder cases, concedes the benefits of the test: "Had it not been for Frudakis, we would still be looking for the white guy in the white pickup." Nevertheless, Clayton says he dislikes anything that implies we don't all "bleed the same blood." He adds, "If I could push a button and make this technology disappear, I would."

While this story is not about autism, I couldn't help but think of the mercury/vaccine debate when rationality was pitted against emotionalism. Both sides of the debate show their fair share of both, often accusing the other side of being overly emotional as a derogatory method of countering an argument (which, in all likelihood, is seen as rational by the one making the argument).

Which gets me back to the question that came to mind as I read the story and am curious what others think: In a situation when rational thought tells you one thing, is it OK to let your emotions rule your decision?

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 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.
- - -- --- -----

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.)

The starting gun

This is the last 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.

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

One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70's and early 80's) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd ("Welcome to the Machine" was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I've been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song "Time" is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

These lyrics are quite literal, and it is not too difficult to catch the meaning. But I gained a bit more insight into these words, especially the last line, while watching a documentary of the making of the album (told 30 years after the fact).

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the "starting gun" had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

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

Original comments:

1. Matt |

   I like the words of Crush (from Finding Nemo): “When they know, you’ll know. You know?”

   That doesn’t fit. It just points out how hard the question really is.

   Oct 10, 5:54 AM —

2. Casdok | motherofshrek.blogspot.com

   A hard question, but a good question.

   Oct 10, 8:40 AM —

3. Elissa | managingautism.com

   It’s a tough question!
   I think the best that we can do is to just allow them to be who they are. Life happens as it does and I guess I have always just thought that our kids will take their own journeys as they need to – as and when it is right for them.

   Oct 10, 9:18 AM —

4. Andy Morris | chanceforrosie.org.uk

   Hi there –
   My name is Andy Morris and I live in the UK. I have a severely autistic daughter called Rosie, age 6. My wife and I have been home educating Rosie for the past 2 years on a ABA based education plan. We also have a very well publicised and exciting fundraising campaign to raise the money we need for this.

   To achieve this, about a year ago my wife Kara and 4 other women formed a very tasteful burlesque-style dance show called ‘The Full Monty Girls’. They have since performed in our local town Stroud, London, Bristol and Brighton and have raised the bulk of the money we have needed for the programme – £17,000 per year.

   As I have said, the show is very tasteful and has inspired many people. The story of Rosie and the Full Monty Girls has been on Chennel 5 news twice, the ‘This Morning’ programme, in Cotswold life magazine, Closer magazine, First magazine, the Sun and the local papers on many occasions. A major USA news programme called ‘Inside Edition’ also did a piece on the show last year.

   We have now come up with a new and exciting initiative. A very tasteful calendar has been made by the Full Monty girls. For the monthly photos, an award winning photographer took some really tasteful and beautiful naked photos of the girls (covered up in the right places, of course!). The front of the calendar features a shot of 100 local volunteers forming the word ‘AUTISM’, naked in a field, taken from a helicopter – quite a feat of organization!

   The reason that I am emailing you about this to ask if you would be prepared to put a link on your website to Rosie’s website. She has a beautiful site, explaining everything that we are doing as well as some useful information on autism. We think that it will and has inspired parents with autistic children. More traffic would help us to sell our calendar and I would hope that the high profile nature of Rosie’s story would bring more traffic to yours, also. I have a PDF of the calendar I can send to you for you to look at and a small web optimised photo if you want to use it.

   Rosie’s website is : www.chanceforrosie.org.uk

   All the best, Andy.

   Oct 10, 2:24 PM —

5. Patrick

   I’m not sure that even when one thinks their spectrum kid is ready for the world that they truly are.

   I am one of the more independent living Asperger’s (more than 25 years of Job history) but still struggle with things that I beleive most would find easy, like managing the monthly finances, housekeeping and of course have little in the way of a useful social life.

   Of course the schools thought I would be ok, as I even completed advanced placement courses in Biology and English. (The equivalent of A levels?)

   Of course my parents thought I was ready because they had taught me how to cook and wash laundry, and for years had me doing the house/yard keeping tasks.

   But I never actually got a job all by myself.

   I work full time and haven’t the energy or motivation it takes to properly keep things up. But of course I deal with Major Depressive Disorder too, and other medical conditions like Sleep Apnea.

   I am not saying that it cannot be done, just that people don’t always turn out as well as they may Appear to be able.

   And Andy,
   While I hope your efforts for the stated purpose are indeed virtuous, the comment is off topic, and may be viewed by some as an appeal to pity, or a scam.

   What are you doing to help Others, besides your own interest?

   Oct 10, 5:28 PM — [ Edit | Delete | Spam

6. Club 166 | club166.blogspot.com

   In an age (in the U.S. at least) when a large proportion of kids come back home to live for a period of time after college, this question certainly applies to all kids.

   But for kids that, of necessity, have had a lot of interdependence with their parents, it is doubly hard to determine when and how to get them to fly “on their own”.

   For many of our kids the prospect of living without at least some supports may never occur. But that does not disturb me. As many others have pointed out, most all of us live with ‘support’ of many types from the community at large. It is just that our society has organized itself to provide support for the majority of the population, which does not include autistics (or many other disabilities).

   I see it as part of my job as a parent of a ‘special needs’ kid to actively advocate for proper supports for all with disabilities. That way, by the time my son is old enough supports will be in place, whether he needs to avail himself of those supports or not.

   Joe

   Oct 10, 8:50 PM —

7. Ms. Clark |

   I am glad that I didn’t have to live with my parent(s) when I became an adult (actually, I lived with my mom until I was 19, and ended up living with her again with my kids for a few weeks when I was in my twenties.) I am also thrilled that my ASD kid can live with me.

   I do understand the American (Western?) drive towards GETTING THE KIDS OUT OF THE HOUSE, but people have to understand that it’s a cultural practice, just like giving every kid their own bedroom is a cultural practice, it’s not handed down from on high as THE way to be an adult.

   There can be huge amounts of shame attached to adults living with their parents here and that is just wrong.

   Yes, parents can die and yes, there should be lots of support out there for people to live in their own homes and not have to go to an “institution” or “group home”. There may be some idea “group home” situations, but it’s my understanding that they act like mini-institutions in most cases.

   So… the “starting gun” of kids living on their own is a creation of a culture. It’s a notion that actually is kind of offensive to some people. I reject it as a mandate.

   Yes, if it’s possible for the kid to move out and the parent wants it and the kid wants it, fine. Other than that, gimme a break. It’s not necessary.

   Oct 10, 9:51 PM —

8. Ms. Clark |

   Oh, and I find the nudist calendar and the “Full Monty Girls” stupid, sort of pathetic actually… but then that’s just my opinion. And the request here for donations was off topic and smacked of “scam,” as noted above, even if it isn’t one.

   Oct 10, 9:53 PM —

9. Joseph |autismnaturalvariation.blogspot.com

   In Latin America, it’s fairly common for the kids to continue to live with their parents, even after they get married. Part of it is economics I’m sure.

   Oct 10, 9:54 PM —

10. Maddy | whittereronautism.com

    I think all parents want crystal balls. I don’t know which is more annoying, not being able to see into the future or being kicked with hindsight.

    I do know that our family is in an entirely different place than we were four years ago.

    All children grow in fits and starts, so it’s impossible to know the possibilities ahead.
    Best wishes

    Oct 11, 3:47 AM —

11. Ms. Clark

    Even if you can trace it to economics, living with parents is not automatically a sad situation, and that’s what the default assumption is. One can make the case that the really sad thing is the way families are dissolved so easily, and geographically separated so often, in the US.

    The fallout of all this emphasis on independence and separation of lives of family members is that it’s fairly likely for an old person here to die alone with kids who show no concern or very little concern for the parent housed in a convalescent home. The idea of “bringing mom and dad home” to live with the kids or for the kids to move back in with parents to care for parents is anathema to most Americans… not all, but most.

    Oct 11, 3:49 AM —

12. Maddy | whittereronautism.com

    p.s. I really like that terribly annoying rolling widget on the top left of the screen with the latest hub postings. Is that something we could or should put on our own blogs?

    Oct 11, 4:08 AM —

13. Leanne | mumkeepingsane.blogspot.com

    I think there’s a difference between having children at home who are contributing (in some way…I don’t necessarily mean financially) to the family and those who sit on the couch and eat their parents into debt while contributing nothing (except maybe whining).

    I would have no problem living with my children as adults as long as they don’t have a “you owe me” attitude or a sense of entitlement about it.

    Oct 11, 1:41 PM —

14. Marie |

    I like the idea of a duplex, aka “mother-in-law’s apartment.” Living together but each having own space, and being as mutually supportive as each desires.

    Who says a “starting gun” has to fire? “And then you find ten years have got behind you” seems to refer to a cultural construct (“by the time you are 18/ 25/ 35 years old, you should have accomplished X and Y and Z”). I wonder if it also suggests that one wasn’t paying attention to the days as they were happening—and so where did they go? and how did I get here? and why am I not there?—and maybe one ought to pay more attention to what’s happening as it’s happening.

    Oct 11, 4:13 PM —

15. Ian MacGregor |

    I let my emotins get the better of me, during my most recent posts. I apologize. I thoought people might be interested in some research being done on extracelluar proteins implicated in autism.

    http://www-ssrl.slac.stanford......utism.html

    Oct 11, 6:12 PM —

16. Andy Morris | chanceforrosie.org.uk

    Please don’t take my post as a scam. I actually misunderstood where my post was going. My email was in fact intended as a personal email to the owner of the site requesting a link somewhere here to Rosie’s website to help sell calendars for our fundraiser.

    I found a couple of the previous posts a touch cynical – there are some decent people left in the world, you know – just trying to do the best for their children. Check the website out if you feel cynical – we put most of our waking lives into our daughter’s progress and have virtually no time for ourselves.

    We have to raise such a huge amount of money every year for Rosie so we knew we had to come out with a eye catching fund raising idea and if that seems stupid to some people, then so be it! At least we know we’re doing everything we feel is right for our daughter.

    Oct 11, 9:31 PM —

17. Another Autism Mom | anotherautismmom.blogspot.com

    I love that song too, but to me it sounds more like a lament from someone in a midlife crisis because things didn’t turn out to be as exciting and happy as we’d hoped, probably due do wrong decisions or bad luck. Now that you clarified about the Roger Waters conversation with his Mom… Well, people become independent, move out, get a job and a family, and it still doesn’t mean they’ll be happy adults. I don’t know what our kids’ future will be like, but I hope that even if my child has to leave with me for the rest of my life, we can enjoy the situation as much as we can, and he’ll be a happy man having fun with his hobbies and other interests, maybe girlfriends or whatever. As far as I’m concerned the good side of this would be that I won’t be devasted that my son is moving away to a different state to go to college and I won’t ever see him except during holidays.

    Oct 11, 9:43 PM —

18. Another Autism Mom | anotherautismmom.blogspot.com

    I meant “live with me”, sorry.

    Oct 11, 9:43 PM —

19. Ian MacGregor

    For those of us with low-functioning children,the question is really concerns what happens to them once we can no longer take care of them. We have no idea of how muh progress they will make, but fear it won’t be enough to avoid being institutionalized, somethng that they might not mind at all. It is not the insitutionalization that we fear, but abuse of our children in these institutions.

    Oct 11, 10:20 PM —

20. Ms. Clark |

    This is a fear of those of us with “middle functioning” children, too.

    The thing to do is to advocate for people to see autistics as humans NOW, otherwise when you are gone the average Joe will see your daughter as a monster, and monsters don’t have feelings. It doesn’t matter what you do to them, and it doesn’t matter if they die.

    Acceptance is your best chance of giving your child the best chance. The demonization of autism might destroy MY kid after I’m gone if it doesn’t stop, and I’m not going to sit still for it now.

    Oct 12, 2:57 AM —

21. original cali biomed xprt |

    Thanks for that link Ian.

    Oct 12, 7:50 AM —

22. Brett |

    Thanks to everyone for your comments so far (and please, keep them coming). After reading the comments, I had to go back and read my original post to make sure of what I had said. It seems that most people interpreted my reference to the “starting gun” as “going out and living on your own.” While that may be one option for some, it’s not really what I meant.

    I agree with Ms. Clark in her assessment of children living at home. In fact, I’m already looking at adding on an apartment (a “mother-in-law space”, if you like) so that may son(s) can continue to live with us.

    I was really thinking more along the lines of the true spirit of the song: how do we let our kids know it is time to live for themselves so that when 10 years have gone by they don’t have any regrets? I don’t really care about what society at large thinks they should have accomplished, I want my kids to be able to look forward at what they want, and back on what they’ve had and done, and not be left wanting.

    Life “beyond childhood” encompasses so much more than just living on your own.

    Oct 12, 7:32 PM —

23. original cali biomed xprt |

    Just a side-note to Brett. The starting gun for me fired very near the HS you write of, however it was a little earlier than when you attended … ; ]

    Oct 12, 8:54 PM —

24. Patrick |

    My apologies if my response was one of those considered cynical Andy.

    A google search does indeed return many hits for the Girls and the Calendar stunt.

    Would you mind letting us kow what special education programme in USA you have selected? (As reported on http://www.stroudnewsandjourna....._rosie.php ?)

    Oct 12, 9:26 PM —

25. Tito Rajarshi Mukhopadhyay |

    I am planning in a long term way
    Till the moment of my last living day….
    ‘I would continue to live at home,
    Even when I am living my 60th birthday.’
    I discussed the plan (till here) with mother,
    She assured me that ‘Its okay.’
    .......
    This is not what I yet discussed
    But it islaid out thus till thus-
    Then as parting hours draw near
    And I would draw my last living year…
    I might go to a broad minded world,
    Who don’t mind applying Euthanasia I am told.
    I would smile a smiling death,
    And thank the doctor for my last end breath.

    – Tito Rajarshi Mukhopadhyay

    Oct 13, 3:46 PM —

26. Andy Morris | chanceforrosie.org.uk

    Hi Patrick

    Thanks for the post! The program is called the ‘Growing Minds’ program and the method is a combination of interactive and directional approaces – a bit like ABA with warmth, play and fun! There is a link to their website from Rosie’s site which is www.chanceforrosie.org.uk.

    All the best to you, Andy :)

    Oct 13, 10:26 PM —

27. Marie |

    [quote]how do we let our kids know it is time to live for themselves so that when 10 years have gone by they don’t have any regrets? I don’t really care about what society at large thinks they should have accomplished, I want my kids to be able to look forward at what they want, and back on what they’ve had and done, and not be left wanting.[/quote]
    Live that way right now. Talk about savings plans and what they’re for. Be open about family budgets and spending. Talk about plans—for tomorrow, for next week, for next year, what might be good to be doing in five years—and how to make them happen, or how to weigh this plan against that and make a choice (or do both?), what steps to take and how much time to estimate for accomplishing this or that goal (from learning to snap fingers or whistle to putting on a Thankgiving dinner to becoming a graphic designer or film editor).

    Starting gun started with the birth day, I think.

    I’m also thinking: When is it time to let your child know it’s time to start dressing himself? Or is that something that a parent even has to do? Maybe it’s something that a child just starts doing—some earlier, some later. Some might benefit from a suggestion like, “Hey, you can do this for yourself, if you like. Here’s how the buttons work, if you care to try it. [and later] Here are some community college courses that might interest you, if you’re serious about that filmography idea. And here’s how you can find out about more such classes for yourself.”

    I dunno. I might see it differently in a few years, but just now I’m thinking that, rather than looking for a certain signal that now it is the time to introduce the idea of independent living, it’s more like a natural progression from day one.

    Oct 14, 5:18 PM —