PEOPLE OF ACTION AND HOPE

Another Autism One Conference has come and gone. A-1 has become the best of the autism conferences. It covers the biomedical side of things in an inclusive and comprehensive manner, but it also includes so much more to connect attendees to the often-scary world of autism, from political and legal issues to educational strategies. Just as importantly ⎯ maybe more importantly ⎯ the people who come from around the country, and beyond our borders, meet and learn the most important lesson of all. We are not alone.

This year, I volunteered and made fewer of the sessions than I did in the past. (I was under orders to attend the talk my lovely-and-talented wife, Sym Rankin, gave with the also-talented Sonya Hintz, giving advice on getting mainstream physicians to look past the autism and understand the underlying physical problems. They did a great job.) Instead, I filled most of my time manning the registration/information desk, and just talking to people.

I did make a couple of sessions that helped to place a context on where we are in this troubling time. One was Friday evening’s talk by Mark Blaxill, entitled, “Intellectual and Moral Failures in Autism Science.” It was thoughtful, provocative, and perhaps a little controversial. The basic theme was that the autism epidemic demands moral action, and we simply aren’t getting it from the intellectual elite. Rather than open their eyes, most people in the sciences are content to let the elite do their thinking for them; they are caught up in “expert worship.” (As we saw in recent examples of the worst in mainstream “journalism,” the elite have a willing partner in the media: see here and here).

Mr. Blaxill drew parallels ⎯ and he was very careful to note that parallelism is not the equivalent of proportionality, so this is not meant to be an invidious comparison ⎯ between the silence of the “good Germans” in Nazi-controlled Germany and that of scientists who might suspect there is a truth beyond what they are told to believe. There is a moral requirement to bear witness that is simply not being fulfilled, and we all need to hold the world of science accountable.

Mark Blaxill was also part of the other session I want to mention. He, Kim Stagliano, and Dan Olmsted were part of a panel discussion ostensibly about Age of Autism, which has become the daily news organ of record for some if us. And while they did discuss the history and mission of AoA, they decided to focus on the single most important story they have covered (see here and the links therein). To do that, they turned the program over to three members of the Somali community (two from the community in Minnesota, which has been deeply affected by autism, and one from Toronto). They spoke of the incredible outbreak of ASD within their ethnic group, a people that had no need for the word “autism” in their language until they came to America. What they experienced here told them that the regression of their children into ASD was a result of vaccinations being forced upon them with little explanation and no real justification.

At first, I shared the Somalis’ anger. I felt a twinge of shame that my country, with its tradition of doing right by those who seek its shelter, could first force these newest Americans into a vaccination program that triggered a disease they had no prior knowledge of, and then the same country ignored their plight. But their story did not end with anger. They took action. They organized and found ways to get people to listen to them. And they have hope.

Action and hope: that pretty much sums up my 2009 Autism One experience. I was expecting to see a smaller-than-average turnout, considering the economy and the media attacks on our opinions. I was surprised to see that attendance was actually quite heavy. Many old friends were unable to make it, but there were lots of new friends to be made. And they weren’t shy about asking the veterans for help. I referred several people to the TACA moms, who took a lot of time to give fantastic advice (you ladies are the absolute best, and a special shout-out to Linda and Christina).

The newbies there helped to energize me for the continuing fight. They are already taking action to help their children. And they are filled with hope, something I share with them.

Action is required, and the hope is real.

IT'S THAT TIME OF YEAR

I'm looking forward to seeing a lot of friends, both old ones and new ones, at Autism One. If you spot me, make sure to say "Hi."

WHY DO WE STILL SEE THIS

Most of us are tired of the whole concept of "autism awareness." Shouldn't the world be aware enough already? But every now and then I see something that tells me the job is not done yet.

There was apparently a recent letter to The Arizona Republic, in which some cranky individual decried the fact that disruptive children are seen in public. In response, Mr. David Cuddeby wrote the following response (go here to see the original post and comments):

The behavior of some children in the store where letter writer Cherie Anderson works describes the way my 3-year-old grandson occasionally acts ("Stores no place for unruly children," Letters, Friday). I guess we could get him a little T-shirt that says, "This is how autism looks."

Perhaps we will take her advice and just leave him at home. As she points out, it is our problem, not hers.

The sarcasm in Mr. Cuddeby's last sentence was lost on the folks around there. Here's one of the comments left at the on-line posting of the letter:

Mr. Cuddeby, you're quite correct in you last statement in your letter; it IS your problem, not anyone else's.

Is your child better served, during those periods of time his behavior becomes uncontrollable, in a public place, where he can - and does - become an object of ridicule by others unaware of his health condition or with his other parent, at home, in an environment he knows to be safe for him?

I want to be clear - I am not saying you should lock your child away at home. I'm suggesting that you, as a responsible parent, need to determine what lengths outside activity has a beneficial effect on your autistic child, and have an option available for those periods of time you child enters one of his autistic fugue states.

Actually, that was one of the nicer comments. Here's one that seem to lay the real feelings of some folks in Arizona on the line:

Okay, let's give a little of this unruly behavior to autistic children who represent 1 out of 150 kids. Now please explain away the other 149 brats screaming at the top of their lungs. God, we have become such wimps and seek to victimize every thing we do. Nipple sucking liberals always have a "reason" for why criminals committ [sic] crimes and how it;s [sic] not their fault and why kids act like brats. Sad.

The general tone of the more civilized comments was that parents of autistic children should not subject their kids to more than they can handle. Loosely translated, that means, "please don't bring your children anywhere where we might be reminded that this autism thing exists."

So despite our desire to move on, we still need autism awareness. We need for the world to be aware that this is not just our problem; it is everyone's. If we don't get help in determining cause and treatments, and if we don't get help in caring for our kids now, then the rest of society will become all-too-aware after we're gone that they have a problem.

Go here to read Mr. Cuddeby's letter and all the comments. Feel free to add to the comments yourselves. Spread a little awareness.

POSTSCRIPT: I went back and did a little editing on this post, realizing that was being a little too broad in my condemnation of folks in Arizona. There's too many good people there, and what we see in these comments may better be characterized as merely being an open and obvious example of attitudes we encounter too often everywhere.

HAPPY MOTHER’S DAY

The Autism File, in both its print and on-line incarnations, has paid tribute to autism mothers everywhere. It’s oh-so-timely, and oh-so-deserved.

I am in constant awe of the mothers of special needs kids that I have met over the last several years. They are relentless. They spend endless hours searching for answers, and wind up becoming the real experts. I’ve seen some of them, with little or no formal medical training, not only become conversant in technical jargon, but they have learned the fine points of clinical application.

Special needs mothers do whatever it takes to stand up for their kids. They educate themselves on their children’s rights, and they become tireless advocates.

I have the privilege of sharing my life with such a woman. There is not a day that passes without my looking at her and marveling that God could create such a person.

It’s not entirely inaccurate to say that what motivates special-needs mothers is the same thing that motivates any mother: an endless supply of unconditional love for their children. That’s the saintly quality of motherhood. What sets apart “special needs” mothers is the opportunity to show an extra measure of maternal devotion on a daily basis.

With that in mind, I’d like to re-post a portion of something I first wrote at the end of October, 2005. I posted it for All Saints Day of that year [the complete post is here], because I wanted to explain to the world why it was that I claimed sainthood for my own mother.

Betty Bursley was born to an old New England family, a direct descendant of Mayflower pilgrims. Her father was a landscape architect for the United States Park Service, and she grew up primarily in Cleveland and Richmond. Education was valued in the family, and my mother earned a degree in biology from Randolph-Macon Woman’s College. During World War II, she met and married a handsome lieutenant in the Army Corps of Engineers, Hugh F. Rankin. After the war, Dad went back to school, and wound up becoming a professional historian. Throughout graduate school and beyond, my mother worked (mostly clerical jobs), helped entertain Dad’s professional colleagues, served as Dad’s typist and most-trusted editor, and raised three sons. She was not only our mother, but was also the best teacher any of us ever had. There was little about the world around us that my mother could not explain and help us understand.

Eventually, the family came to New Orleans, where Dad joined the faculty at Tulane University. Faculty pay in the fifties being what it was, my mother needed a job, and she became the secretary for the newly formed Jazz Archive (now called the William Ransom Hogan Archive of New Orleans Jazz) at Tulane’s Howard Tilton Memorial Library. She took notes at jazz funerals and second-line parades, assisted the curators in conducting oral histories, and helped organized a priceless collection of recordings, sheet music, photographs, and memorabilia. She developed a passion for the music and a genuine love for the musicians. Despite no academic background in musicology, Mom eventually became an associate curator of the Archive.

After retiring from the Archive, my mother (by that time known as “Big Mama,” a nickname she acquired partly because Dad had been dubbed “Big Daddy” by his graduate students) took on several volunteer positions with various groups. In the early eighties, she heard about a fledgling community radio station, WWOZ, which needed volunteers. For the uninitiated, WWOZ plays a wide variety of genres, but specializes in the musical forms that help to define South Louisiana. My mother started out typing letters and stuffing envelopes, but somebody soon realized the resource they had, and she was thrown in front of a microphone. For the next several years, Big Mama hosted what became known as the “Moldy Fig Jam,” a popular 90-minute program of Traditional Jazz and Ragtime on Saturday mornings. Mom took enormous pleasure in sharing her love of New Orleans music, and included far more background on the musicians than could be found anywhere else on the radio dial. After decades of being known as Hugh Rankin’s wife, she was now an internationally known personality (WWOZ’s web feed has made it a world-wide favorite).

Of course, the fact that she was a nice person who had a knack for teaching others what she knew did not qualify her for sainthood. The remarkable thing about Big Mama was the nature of the lessons she taught. And the best way to explain that is to write about her parting lesson.

During a heart operation in the eighties, Big Mama received some tainted blood, and contracted Hepatitis C. It went undetected for years, until she eventually started having active liver disease. My mother expressed no bitterness, and she blamed nobody. She faced this problem as she faced everything in life, good or bad: with equal parts optimism and acceptance.

In late 1997, Big Mama’s liver began to fail altogether, and she spent the next few months alternating between improving and falling into hepatic comas. Whether she was conscious or comatose, my brothers and I, and often our wives, were at the hospital a lot: reading to her, helping to feed her, or just spending time. She had a spell in the middle when she was alert, happy, and as full of life as anyone could hope to be. We talked for hours about lots of things: philosophy, religion (Mom was a lifelong Presbyterian; I am an Episcopalian), music, politics, and whatever happened to be going on in the world. It was important small talk, because no matter what plans we made, the unspoken reality was that she probably wasn’t going to be coming home.

Sure enough, Big Mama fell into another hepatic coma, from which she clearly wasn’t going to come out. A few days before she died, I got out the Bible from which we read during her last alert interval. Struggling to figure out what to read to her, I went to the assigned readings of the day listed in the Episcopal Book of Common Prayer I had left in her room. One of the readings was the familiar exhortation by St. Paul in his first letter to the Corinthians:

If I speak in the tongues of mortals and of angels, but do not have love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have faith, so as to remove mountains, but do not have love, I am nothing. If I give away all my possessions, and if I hand over my body so that I may boast, but do not have love, I gain nothing.
Love is patient; love is kind; love is not envious or boastful or arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice in wrongdoing, but rejoices in the truth. It bears all things, believes all things, hopes all things, endures all things.

There could be no more fitting passage to describe my mother’s relationship with her family, her friends, and the world around her. I looked up and saw my mother sitting upright in bed nodding her head. Her meaning was clear: “That’s it; that’s all you need to know.” She put her head back onto her pillow, still beaming a beatific smile. That was the first time in almost a week that her head had been off of the pillow or that any expression could be discerned on her face. It was the last time she communicated in any way.

My mother passed away on February 24, 1998, as I held her hand and my wife, Sym, stroked her hair. (In a last act of kindness, Big Mama held on until Sym could get there so I wouldn’t be alone.) Of all days, it was Mardi Gras morning. We were at Touro Infirmary, a hospital just a block off of St. Charles Avenue in New Orleans. Along the Avenue, families were gathered to celebrate life as it can only be celebrated in New Orleans. I like to think Big Mama, hoping to second line one last time, wandered around until she found the Irish Channel Corner Club making their annual “march” downtown to the beat of the Paulin Brothers Band. I can only hope the band was playing “When the Saints Go Marching In.”

It doesn’t matter whether there is a label; every child is a “special needs” child. Each is unique. Each is deserving of the saintly love of a great mother.

Happy Mother’s Day to all the wonderful women who give that kind of love.

ADDENDUM: For more on the saintly quality of motherhood, go here to Ginger's blog.

FOLLOWING THE MONEY

I’m really not blindly anti-vaccine, but there can be too much of a good thing. Over the last couple of decades, as we’ve seen the vaccine schedule expanded to include more and more shots ⎯ and earlier and earlier sat that ⎯ we’ve seen a steady decline in overall health. (Okay, I don’t really have any stats to back that up; I’m relying mostly on the observations of heath-care professionals I know who tell me they are seeing more and more autoimmune problems in younger and younger people.) Isn’t that the opposite of what we should be seeing?

The amazing expansion of the vaccine schedule runs counter to the constant pronouncements from the defenders of the vaccine program (who have become known as “the Offiteers”) that pharmaceutical companies really don’t make much in the way of profits from vaccines. Why would the companies go to great lengths to develop new vaccines and get formal approval for them? How can they afford to pay such tremendous royalties to patent holders if they aren’t making money.

Barbara Loe Fisher (founder of the National Vaccine Information Center) addressed those questions in a recent post on her blog. The post, “Politics, Profits & Pandemic Fear Mongering,” could not be more timely. With everyone going into panic mode over the outbreak of swine flu, thee is a legitimate fear that our government might repeat the mistakes of the last swine flu panic back in the seventies. The feared pandemic never appeared, and the emergency vaccination program was nothing short of disastrous in terms of the number of deaths and diagnosed cases of Guillen-Barre.

Who’s in charge of our public health policy? Who influences how that policy is depicted in the mainstream media? All one has to do is follow the money.