Tag Archives: News

Military service

It is that time of year for military recruiters to canvas high school campuses for potential recruits.  I originally posted the following in May 06.  This article applies to those who live in the U.S.

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If your autistic child is in an inclusion setting in high school, attending as a “regular” student, you will eventually encounter military recruiters. As part of No Child Left Behind, public schools are obligated to provide student information to the local recruiters. A recent story in the Oregonian (excerpted below) shows the problems that can occur.

To help prevent this kind of problem, you can take the following steps:

  • Have appropriate documents of diagnosis, treatment, IEPs, etc. for your child
  • If possible, obtain a letter from the school district case manager, pediatrician and others
  • Be proactive, and find out who the local recruiters are, for all services
  • Be even more proactive, find out the chain of command for your local recruiters, all the way up to the first field grade officer (usually a Lieutenant Colonel, Battalion Commander)
  • Send a letter to the local recruiter, with a courtesy copy to the chain of command, stating your child’s situation and that you would appreciate having your child excluded from their recruiting activities
  • If needed, send the documentation you’ve gathered to the local recruiters.

Of course, you may want to ask your son or daughter what they would like to do before acting on the latter two options. They may want to, and be able to, serve in the military and it would be wrong to try to stop them (beyond the efforts many parents already make to keep their “typical” kids out of the military). On a related note, registration for Selective Service registration is still mandatory for all men on their 18th birthday. As far as I know, there are no exceptions.

Excerpt from the Oregonian:

“When Jared first started talking about joining the Army, I thought, ‘Well, that isn’t going to happen,’ ” said Paul Guinther, Jared’s father. “I told my wife not to worry about it. They’re not going to take anybody in the service who’s autistic.”

But they did. Last month, Jared came home with papers showing that he not only had enlisted, but also had signed up for the Army’s most dangerous job: cavalry scout. He is scheduled to leave for basic training Aug. 16.

Officials are now investigating whether recruiters at the U.S. Army Recruiting Station in Southeast Portland improperly concealed Jared’s disability, which should have made him ineligible for service.

Jared didn’t speak until he was almost 4 and could not tolerate the feel of grass on his feet.

Doctors diagnosed him with moderate to severe autism, a developmental disorder that strikes when children are toddlers. It causes problems with social interaction, language and intelligence. No one knows its cause or cure.

School and medical records show that Jared, whose recent verbal IQ tested very low, spent years in special education classes. It was only when he was a high school senior that Brenda pushed for Jared to take regular classes because she wanted him to get a normal rather than a modified diploma.

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More info about the US military services for US parents:

[Go Army!!] [sorry, couldn’t resist]

Autism and the tragedy of the commons

Last summer, I put Cooperation and the tragedy of the commons, from the Anecdote blog,  in my “to blog” pile.  It seemed relevant, but I just couldn’t quite figure out how.  In his post about an Alliance for Autism, Mike Stanton raises the problem of reconciling the individual wishes and desires of parents and adults with autism with the long term goals of autism advocacy, which has helped me better understand the relevance.

The problem Mike raises shows up in many different domains and is known as the tragedy of the commons.  Simply stated, tragedy of the commons is:

a dilemma in which multiple individuals acting independently in their own self-interest can ultimately destroy a shared resource even where it is clear that it is not in anyone’s long term interest for this to happen.

The anecdote post references a story on washingtonpost.com discussing the Democratic primary race between Barack Obama and Hillary Clinton and the results of a study done by social psychologist W. Keith Campbell.  From the study:

… because the volunteers did not know whether their kindness would be reciprocated by others or exploited by competitors, people raced to cut as much timber as they could and quickly razed the forests to the ground. Groups with volunteers more willing to think about the collective good preserved their forests longer. But selfish people within these groups had a field day exploiting the altruists — and the forests perished anyway.

Campbell’s experiment is particularly relevant to politics, because he found that groups with a larger number of narcissists — people with an inflated sense of their own importance — tended to raze the forests much faster than groups in which people felt less self-important. Politics, unfortunately, happens to be a domain that self-selects people with an inflated sense of their own importance.

Political scientist Edella Schlager offers the following as a solution:

… the only way to prevent tragedies of the commons is to set up structures in advance that reward long-term thinking and punish short-term selfishness. This happens mostly among competitors who share long-term interests and have social relationships of trust: If you and I are Maine lobstermen, we are likely to agree to set up limits on the overall catch each year because we see our future, and our children’s future, inextricably linked. In the absence of trust and long-term relationships, the only way to prevent these tragedies is to have an outside regulatory agency step in to establish — and enforce — limits.

Sadly, many of the “competitors” in the autism community (communities?) don’t seem to think we share any long term interests, despite the fact that I’m sure we probably do.  Nor are there too many “social relationships of trust”; even here on the Hub there is a general undercurrent of mistrust between adults with autism and non-autistic parents, stemming I think from the lack of shared long term interests mentioned above.

On the other hand, it is easy for the Hub’s “competitors”, as exemplified by the folks at Age of Autism, to avoid the TOTC:  they speak with a single voice (“Vaccines are bad”, “Vaccines caused my kid’s autism”, “Neurodiversity believers are deluded and in denial”) and trust that everyone on “their side” will stay on message.  There are, of course, some more reasonable voices among the bio-med group, but it is the vocal (apparent) majority that makes the most noise.

Mike is on the right track with his proposed Alliance for Autism.  The first step is to figure out what our shared long term interests are, and from there work to build the trusting social relationships that we need to move forward.  Who knows, we might even find that we have some common ground with our “competitors” in what we want for our kids when they become adults.  Wouldn’t that be something.

I’ll kick it off with a couple of my own long term interests and goals:

  • My son receives an education (from me, the schools, his peers) that allows him to participate in the world around him to the extent that he chooses to participate.
  • The general public becomes more aware that adults with autism are adults first, that they have dreams, desires, and interests just like everyone else, and should be allowed and empowered to pursue those dreams, desires, and interests.
  • A legal environment that enforces the above, when necessary, in the workplace and other areas where autism, and other disabilities, are treated with disdain and disrespect.

A meditation on individual expression

A couple of weeks ago, I posted a meditation on censorship. In light of all the recent discussion surrounding the film Tropic Thunder, I thought I should post this companion meditation on individual expression:

Emperors uphold censorship,
But extreme repression leads to extreme reaction.
Individualists believe in freedom,
But extreme expression leads to extreme reaction.

To answer the question I posed in my last post, “No, I don’t believe the creators of pop-culture have a responsibility for limiting their content to what is ‘acceptable’.” The nature of art is individual expression, and in that the ‘artist’ is responsible only to himself.

As the meditation above states, though, this unlimited expression might result in “extreme reaction.” Artists must accept the consequences of their expression. If they offend or anger a group of people, or even individuals, they should expect those people to express their own feelings. This could be a blog post, a letter to the editor, or a boycott.

In the case of Tropic Thunder, I don’t agree with calls for the film to be changed or for it to not be shown. That is an extreme on the “censorship” end of the spectrum. I do, however, support those who call for a boycott or other action against by individuals or groups about the film. That is an acceptable reaction to the individual expression of the film-makers.

Pop culture has power; does it also have a responsibility?

In a previous post in which I discussed the power of pop culture, I wrote the following:

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.

(You may have also seen a version of this post earlier this year, when I reposted it in the wake of the ABC Eli Stone story. And, no, I’m going to repost the whole thing again 😉

In the article Film comedy courts controversy; mental disabilities heart of issue, Jenny Goode, chief executive officer of the Betty Hardwick Center, has the following to say about pop culture::

“What we need to consider as responsible adults is that things that occur in pop culture, movies, television and books are things that people do use in some sort of layman’s way to educate themselves or to learn from or emulate in their own lives,” she said. “These things are repeated by young people and adults alike.”

These two quotes together brought to mind those immortal words of wisdom from Peter Parker’s Uncle Ben (yes, another somewhat gratuitous pop culture reference): “With great power comes great responsibility.”

Do the creators of pop culture – or any kind of “culture” – have a responsibility to wield their power responsibly?

Or is it our responsibility as consumers of pop culture to understand what it is that we are consuming and put it into the proper perspective for our own lives?

Missouri creates Autism Commission, Office of Autism Services

I don’t have a lot of details, but heard this in the local headlines on KWMU this morning. Just a couple of links on Google News, I expect more over the next few days (weeks)? From the Joplin Globe:

A statewide commission on autism spectrum disorders will be assembled and, by July 1 of next year, will produce a plan for Missouri to offer treatment, training and other services.

[…]

The commission will be made up of representatives from the General Assembly, health-related state agencies and autism-related organizations, and parents. Kinder was filling in for Gov. Matt Blunt, who is out of state.

[…]

Kinder spokesman Gary McElyea said members of the state commission should be chosen fairly quickly.

As you might imagine, there is a lot of disagreement about what exactly the commission should do, what should be its priorities, blah blah. I applaud the gesture, and the intent, of the commission, but I’ll withhold any real assessment until I see what they actually plan to do.

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.

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.)

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:

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 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.