LOVE CAN . . .

I have a friend who is into triathlons, not one of the saner pastimes that come to mind. In any event, he recently sent me a link to a You Tube video about some fixtures on the triathlon scene, and I thought I would pass it on.

I had heard of Team Hoyt before, and saw at least one television report about them. When Rick Hoyt was born, the umbilical cord wrapped around his neck, depriving him of oxygen. His parents didn’t accept that their son would be a “vegatable” or better off in an institution. Through their persistence, Rick progressed, and learned to communicate through mechanical means.

While in high school, Rick told his father, Dick, that he wanted to participate in a five-mile run to benefit a local athlete who had been paralyzed in an accident. Dick ran the race, pushing his son in a wheelchair, and Team Hoyt was born.

Eventually, Dick and Rick began to run marathons, and later turned to the grueling triathlon. Doing so required that Dick learn to swim. They compete using a special wheelchair that Dick can push for the running leg, an inflatable boat that Dick pulls for the swim, and a modified bike with a seat for Rick in front of the handle bars.

I recall being moved when I first saw a news report about Team Hoyt. But this new video, appropriately entitled “Can,” had me in tears of joy for this father and son. There’s no narration, just film of them set to the music of a popular Christian song. The viewer can’t help but see the love between Rick and Dick, and the inspiration they draw from each other.

Dick Hoyt wanted what every parent wants: to help a child live a full life. The lengths to which he has gone should inspire us all. Go see the video, and then go learn more about Team Hoyt at their site.

(Updated) OF CATS AND CONGRESS: AN OPEN LETTER ON THE COMBATING AUTISM ACT

It has been often said that getting different groups of people within the greater autism community to agree on anything is like herding cats. Some of the best cat herding to date occurred in the last couple of months in 2005, when several advocacy groups, including some with vastly different agendas, got together to see if they could come together to help Congress revise the pending Combating Autism Act. Those groups helped turn what had been a mere opportunity for Congressional showboating into a piece of proposed legislation that could actually accomplish something. The language that the groups all agreed to support was far from perfect, but it was a dramatic step in the right direction.

Although it was not the focus of the Act, a small section of the bill encouraged ⎯ but did not necessarily mandate ⎯ research into the possible role of environmental insults, including vaccines and their components, in triggering ASD. The inclusion of that language reflected a view that the debate must be settled once and for all, in a manner that could be deemed trustworthy.

Herding cats is one thing. Herding senators is something else altogether. Most Washington insiders predicted that the bill would never pass if it included the vaccine language, but still hopes ran high.

The latest word from the Capitol is that the final draft will not include the vaccine language. It seems that some senators are more concerned with avoiding questions than with looking for answers. The following is the text of a letter my wife and I faxed to our senators, Mary Landrieu and David Vitter.

Dear Senators Landrieu and Vitter:

As constituents and as the parents of a child on the autism spectrum, we are grateful that you have both co-sponsored the Combating Autism Act (“CAA”). As you are probably aware, it is estimated that one out of every 166 children born will eventually be diagnosed with an autistic spectrum disorder, and in many cases those diagnoses may be preventable.

To say that the possible role of various environmental factors ⎯ particularly vaccines (both thimerosal-containing and live-virus) ⎯ is a controversial subject would be a gross understatement. The participation of the Centers for Disease Control (“CDC”) and National Institutes of Health (“NIH”) (through the Institute of Medicine) in the debate have served only to foster feelings of suspicion and distrust toward the government-supported institutions that should lead the way to the truth of the matter. The purpose of this letter is not to convince you that those causal connections have been proven, but rather to highlight the ongoing nature of the controversy, and how actions being taken in the Senate may hinder the resolution of the controversy.

The original introduction of the CAA was a noble idea that left much to be desired. Several autism advocacy groups identified deficiencies in the original bill, and worked with members of Congress to fashion a compromise bill that can move the nation toward answers and solutions.

The bill provided for doubling NIH spending on autism research, empowering the Director of the NIH to act as an “autism czar,” creating a screening program in all 50 states for the early identification of children with autism, funding the efforts of the Autism Treatment Network to identify the best medical practices in the treatment of autistic kids, continuing funding of the epidemiological and public education programs on autism at the CDC, establishing “centers of excellence,” and authorizing nearly $1,000,000,000 of federal spending on autism over the next five years on programs ranging from public awareness and early diagnosis to basic biomedical research.

The compromise bill includes two important provisions that would go far in restoring confidence in Congress and the scientific institutions it funds. A monitoring process will provide much needed transparency to the manner in which the Director of the NIH fulfills the duties placed upon that office. The second important provision indicates that the research conducted by the centers of excellence “should include … research on a broad array of environmental factors that have a possible role in autism, including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).”

The compromise bill is significant in that 21 separate organizations, many of which do not concern themselves with the issues of a possible causal connection between vaccine components and autism, were able to agree on the best way to move this country past the stage of debating about autism, and instead concentrate on dealing with this serious problem. No one organization can act as the “voice” of the autism community, nor can it be said that the 21 organizations who support the compromise bill speak for all families of autism. But the agreement was as close to a consensus as can be reasonably expected.

Unfortunately, it appears that some Senators do not fully appreciate this historic opportunity to help their nation move past the debate. The Health, Education, Labor, and Pensions (“HELP”) Committee is scheduled to release its official draft of the CAA on July 12, 2006, with final revisions to be considered at a committee session on July 19, 2006. Reports from the Capitol indicate that the committee will drop the language directing research into the role of environmental factors, including vaccines and their components, from the final draft.

If that is the proposed language is removed from the bill, the United States Senate will have sent a terrible message to the American people. That message will be that political expediency trumps the need to discover the truth.

In the past ten months, you have both been forceful advocates for the rebuilding of our state. We now ask that you become advocates for our son, and for the countless families who want answers for as to why their children are autistic, and what can be done. We ask that you use whatever influence you may have to convince the HELP Committee leave the compromise language in place. Failing that, we ask that you take action on the floor of the United States Senate to restore the compromise language.

Thank you for your consideration.

I’ll let you know what kind of a response we get.

UPDATE:

As might be expected, we have heard nothing from our senators. In general, the news from Washington has been sparse and not very encouraging. On the morning of July 12th, Senator Christopher Dodd of Connecticut stated on Imus in the Morning that he was not aware that the vaccine language was being taken out of the CAA, and that he would “fight tooth and nail” to keep it in. Apparently, if he fought, it was not enough. Although it is near impossible to get any definitive word on what exact changes were made to the language of the bill, the word has been that the vaccine language is out.

Of course, there is one man who can probably manage to restore the directive to research the possible connection: Senator Rick Santorum of Pennsylvania. He was one of the original sponsors of the CAA, and has been posturing as a friend to the various advocacy groups since then.

It would be an understatement to say that Senator Santorum’s stated interest in exploring the controversy has been met with some degree of skepticism. This would be the perfect opportunity for him to prove his detractors wrong. To that end, it is probably a good time to remind one and all what Senator Santorum had to say back on June 16, 2006:

. . . We need to invest more science in determining the potential causes or triggers of autism, and see where that science leads us. That means taking a more intensive look at things like environmental causes, neuroscience, specific treatments, and the role of genetics.

We can’t look at some environmental factors and possible causes, while ignoring others. How about it, Senator? Why don’t we “see where that science leads us?”

ACCEPTANCE

There was a healthy debate in the comments to a post I did last week, with the conversation focused on the question of whether a parent can consistently “accept” their autistic child and yet seek a “cure.” I use the word “cure” here in a very broad sense to mean seeking a means of eliminating many, if not all, of the clinical aspects of autism that are generally, if not universally, considered to be disabling. Of course, even the concept of “disability” is subject to debate.

Joseph, with whom I have long disagreed over the issues of whether environmental insults may play a causative role in triggering autism and whether there really has been an increase in the incidence and severity of autism, wrote the following:

[An] aspect of autism that separates it from other disabilities is the fact that it’s a brain difference. So it has a profound impact on the personality and way of being of an individual. Because of this, the question of cure becomes an ethical dilemma. To cure someone implies a personality alteration. Imagine that there was a technological way to alter the personality of a child to match our wishes and dreams. Would that technology be ethical? (In a more detailed message I could even argue that the difference between ‘altering personality’ and ‘curing autism’ is nothing but a subjective construction). And the way you can usually tell if something like this is really an ethical problem is to ask the potentially affected individuals. Autistics have said that being cured would be akin to having an alien force power our bodies. Ethically, there’s no justification for ignoring what autistics have said on this matter.

Joseph is correct that there is an ethical obligation to carefully consider what it is that we are trying to accomplish by any given intervention, but he misses the mark, at least in my opinion, when he assumes that everyone seeking a cure wants to alter a child’s personality to match the parents’ wishes and dreams. I have indeed listened to what autistics have to say on the question, but listening, considering, and reaching an opposite conclusion is different from “ignoring.” Calling something a “brain difference” does not really help to define what the difference is or what causes the difference.

Joseph’s representation that autistics equate being cured to having an alien force power their bodies begs an important question. Do any autistics who have had their autism biomedically remediated share that fear? Indeed, I have been told time and again by some adult autistics that nothing I do can possibly cure my child of autism. If that is so, how can any autistic individual know what the impact of a cure would be? How does anyone know that the essence of an individual’s personality would be altered by a hypothetical cure?

One autistic adult whose writing I read on a regular basis is Amanda Baggs, who blogs under the name ballastexistenz. Again, listening is not the same thing as agreement. Yet any beliefs about the nature of autism would have no validity at all if I was not willing to let them be challenged ⎯ and perhaps altered to at least some extent ⎯ by her writing. Ms. Baggs was interviewed as part of the NPR report I mentioned in my last post, and she had this response to my taking exception to a comment of Jim Sinclair’s:

With regard to loving a child and hating autism, one thing I said in an interview for the same radio show (but that didn’t make it onto the air) was that there’s no such thing as autism, and that this is probably what has a lot of people confused.

What there is, is a kind of person that is autistic, and this goes deeper than personality or culture. Just as there is a kind of person that is male or female, instead of an abstract concept of “maleness” or “femaleness” that each person “has”. “Autism” is an abstraction, not a thing.

However, that abstraction allows people to believe that it’s a thing, that can be separated from the person, rather than a word used to describe a certain aspect of the person.

And so, yes, if you hate the autism, you’re hating a fundamental aspect of a person (this goes for if you’re a parent, if you’re autistic, whatever). That doesn’t change based on whether or not it’s considered polite or even downright shocking by your standards to “define people’s relationship to one another for them”.

I wish I could share the view that autism is a mere abstraction, but that would ignore the multiple disabilities challenging my son on a daily basis. [Update: For clarification by both Ms. Baggs and me on this point, please see the comments to this post.] The points made by Joseph and Ms. Baggs were addressed quite well by comments from my friend (who someday I hope to meet face-to-face, and who I trust will forgive me for some editing), María Lujan:

… a human being is much more than a label. Because the diagnosis is given based on behaviors and absence of certain skills (language for example) I wonder how do we know if the behaviors are not resulting from the intrinsic … person but resulting (some of them? how many and how?) from the interaction of … genetics with the environment and the resulting medical problem?

Why [do] many of the behaviors associated [with] ASD disappear under certain treatments (not behavioral) with parallel improvements in certain biochemical parameters? If they were intrinsic to the person, there [would be] no way to change, [just] as there are no ways to change the DNA today.

María’s moral sense of the matter is as strong as her scientific sense:

My son’s soul has not been stolen by vaccines or thimerosal. The autism he has does not make my son less human. The autistic he is deserves all my consideration and acceptance and love and also the best medical care, a medical care I have not found in the [mainstream] medicine available.
. . .

Like you, I want answers based on high tech science, [not] epidemiology or statistics. I want science based on clinical studies of high quality, not politics. I want to know about the truth and I refuse to be involved in a “game” where it seems more important to win or to be right ⎯ at any cost ⎯ than the truth. And like you I consider that autistic[s] deserve and must be respected and considered and [heard]. However, this does not exclude me from my rights and my duties to give my son the best opportunities for the best life quality he can get under my personal research and responsibility, using all the tools available to me with appropriate information.
. . .

I do not consider AUTISM a gift, but my AUTISTIC CHILD [is] a gift. I do not … celebrate AUTISM but I celebrate his existence, or in other words the CHILD he is, autistic or not. I enjoy life with my autistic son, even when I cannot find [joy] in autism, because for me they are different things …

Like everyone else in this ongoing discussion, I have a tendency to overgeneralize opinions by other people, and to place people in “groups” that, in reality, may not exist. As Ms. Baggs writes: “When someone is on ‘your side,’ it is very easy to not see how it can look from another ‘side’.” I have to say, however, that I have never personally spoken to anyone who I believe has adopted biomedical interventions out of a lack of love, respect, or acceptance of their child. Such a parent may exist, but I have not yet met one.

Indeed, the act of intervention requires some level of acceptance. One must accept the fact that a child is autistic. That may not be the type of acceptance that is defining the debate; it is an acceptance of “autism” vis-à-vis acceptance of “the autistic.” But it is just as meaningful in a very important way.

Tamar Bihari is not a proponent of biomedical interventions, nor is she a vociferous critic of them. She is a mother who also happens to be a fine writer. Tamar wrote an essay for the Autism Speaks site, that is well-worth reading. She speaks eloquently of the difficulty many of us had in accepting the reality of autism, and makes an important point:

The turning point is not the diagnosis itself, I think. It’s the willingness to see. To understand that your child has this condition, that the way he or she is acting is not willful, is not unique, and is not something he or she will grow past, not without help.

The issue isn’t one of acceptance and love; it’s of response. In his comments, Joseph acknowledged that some in the “autism rights movement” acknowledge that autism is a disability, and then adds: “The question is what to do about it and how it should be constructed.”

If the construct of autism is defined by a constellation of dysfunctions, an appropriate response includes interventions to counteract the problems. If, on the other hand, autism is a mere cognitive difference that resulting solely from genetics unrelated to any environmental insult, then no amount of intervention will make a difference anyway. From the practical side, the real issue becomes safety of protocols. The ethical dilemma, however, is unresolvable.

For her part, Ms. Baggs feels it remains unethical to not “accept” the autistic child “as is,” regardless of whether the cause is genetic or environmental. I don’t think the question is that easily answered. I believe the answer lies in the heart of each parent of an individual autistic child. I speak only for myself when I say my conscience is clear.

Note: The extracts from the comments I quote above may not convey the complete context that the original writer intended, and I certainly invite and encourage the reader to refer to the original post and comments.

INDEPENDENCE DAY

I have a lot of things on my mind these days, but they must take a back seat today. It’s the Fourth of July, Independence Day in the good ol’ U.S. of A. It is therefore more than appropriate to take a break from all the other stuff, and take a few moments to reflect on being an American (my apologies to my friends in the other “Americas;” it’s just too awkward to call ourselves United Statesians).

I remember learning to sing all of the patriotic songs in grammar school: “America the Beautiful,” “My Country ‘Tis of Thee,” “God Bless America,” “Grand Old Flag,” etc. Being the son of a historian, I was raised on tales of the patriots (or whatever the 18th Century term for “terrorists” was, as they were probably known as in England) who founded our country on the principles of individual liberty.

As I grew older, however, the Vietnam conflict made patriotism a problematic concept. It became difficult to separate our feelings about our nation from the way we felt about an undeclared war that left so many of our countrymen dead for an end we really couldn’t understand. Our feelings about the nation and its course were reflected in slogans: “Make Love, Not War” versus “America: Love It or Leave It.”

The slogan that stayed with me through the years, at least in the sense that it provoked thought on my part, was “My Country, Right or Wrong.” It acknowledges that the governance of the United States is a human enterprise, subject to human error and human vices. Issues will divide us, and sometimes our government may lose sight of the core principles on which the nation was founded, but we remain Americans.

We learned a lot from one another in the disagreements over the Vietnam war. Those who supported the policies that had us fighting in Southeast Asia learned that protesting was not necessarily “un-American.” Those who thought the war to be a tragic mistake learned that they could not place the blame on the men and women whose job it was to carry out the country’s stated policy. Those lessons didn’t come easy, and it took years before we could look back and understand those to be truths, but we did learn through a lot of reflection.

To be sure there is still demagoguery among our politicians about the current military operations in Iraq, but the spirit of the people rises to the level where, no matter how we feel about the policies that have our men and women in harm’s way, we honor those who honor the entire country by their service and sacrifice.

I thought about the question of honor a few days ago while reading an essay in the July 3rd edition of Time. The essay by retired Maj. General Robert Scales, argues that it is wrong to debate a constitutional amendment to ban flag burning at a time that so many flag-draped coffins are coming home. General Scales does not address the wisdom ⎯ or lack thereof ⎯ of the Iraq operations. As a career military man, he is more concerned with how the policy is carried out and our military supported, and he wants to ensure that the men and women who serve are honored by our elected officials. The flag is not the property of our politicians, nor is it intended for those politicians to wrap themselves in. It belongs to the people, and particularly to those who sacrificed for the people.

That’s a tall order. Asking politicians of any party to keep their eyes on what really matters is often a forlorn enterprise. If our elected officials were able to look at the big picture, our foreign policy would probably not have our military involved in all of the operations they must carry out today. But we did not last 230 years, surviving all manner of fools in the White House and the halls of Congress, because of the wisdom of our leaders. No, we have not lasted through the wisdom of our leaders but rather through the wisdom of the people.

Now that’s worth celebrating. Have a safe and happy Independence Day.