HOPE

Oh my, Wired magazine has entered the fray with Amy Wallace’s unabashed love letter to Paul Offit. Whenever I see Doc O’s name pop up, I have an almost Pavolovian need to respond. In this case, though, nothing new was said. Besides, J.B Handley has already done a fine job, over at Age of Autism, of discussing this puff piece.

Although I see no need to directly address Ms. Wallace’s screed, I’d like to discuss the recurring theme we keep seeing from those who deny the very possibility that we are in the midst of an epidemic, and the related possibility that a program intended to protect our children might have played a major causative role in the creation of the epidemic.

Ms. Wallace writes that, “[w]hen a child is ill, parents will do anything to make it right.” She makes that sound like a bad thing: that parents would want to go to whatever lengths are necessary to heal a sick or injured child. Ms. Wallace apparently attended the Autism One Conference last May, but it’s difficult to know if she actually listened to much that was said. It’s not just that she seems to think ⎯ quite incorrectly ⎯ that the whole conference was about blaming vaccines, but she belittles the various advances in biomedical treatments that were discussed there.

Again saying it as if it was something bad, Ms. Wallace recounts her Autism One experience: “To a one, the speakers told parents not to despair.” Are we supposed to go through life without hope that our children can get better? Apparently that would be preferable to living with the hope that we are getting. Ms. Wallace makes sure that her new best friend’s views are stated: “Offit calls this stuff, much of which is unproven, ineffectual, or downright dangerous, “a cottage industry of false hope.”

I can only speak for my family, but we have chosen to live a life of hope, and that hope ⎯ and a lot of hard work ⎯ has brought rewards. I generally avoid writing a lot about our son on this blog. It’s mostly a matter of his privacy, and my belief that some day he will make his own choice as to what he wants to say. But I need to bend that self-imposed rule a little to talk about hope, and how sometimes hope and reality are not that far apart.

About five years ago, a self-styled “developmental pediatrician” told us that the Little Rankster was definitely autistic, and we needed to do three things: 1) get him on Ritalin; 2) put him in a special school; and 3) start looking into a residential placement he would probably need in a few years. He explained that the best we could expect from pharmaceuticals and special schools was a delay in the inevitable.

None of those recommendations were followed. We chose, instead, to use “unproven” biomedical treatments, which we mixed in with speech therapy and a little bit (but only a little bit) of traditional behavioral therapies. We made those choices, even when a multi-disciplinary team, at the end of a very expensive evaluation, gave us advice that was similar to the pediatrician’s, albeit a little less gloomy. It didn’t seem to bother any of these professionals that the one thing they all advised us to try, Ritalin, was “unproven” as to either efficacy or safety for children of our son’s age.

We chose hope for our son. It has not been easy. There are no magic bullets. Because the medical community serving our kids is still learning about how underlying conditions result in the clinical manifestations of autism, there have been a lot of changes in what we’ve done. Not everything we’ve tried has worked, but there have been a lot of successes. The process has required constant research and re-examination, mostly by my wife. Before trying anything, we look at what testing and clinical signs are pointing to, and whether there is a rational basis for what we intend to try. Most important, we weigh the potential risk against the potential benefits, and err on the side of safety.

Skeptics will say that “all children make progress,” and we can’t prove that any progress our son has made can be tied to the interventions we have used. Frankly, I don’t care about proving anything. The timing and the nature of the improvements we have seen tell us when we are seeing results.

Through the years, we have seen those results. Our son remained in public school in “regular” classrooms, first in Louisiana and then here in the midwest after we moved up here a few years ago. At first, he needed a lot of help ⎯ the kind that the schools are required to provide. But as his physical condition improved through the biomedical interventions we used, so did his school performance improve. He’s still under an IEP, but he hasn’t needed an aide for the last year-and-a-half.

The Little Rankster has steadily showed more interest in the world around him. This year, he’s in the school chorus. Let me restate that a different way. The boy who could not speak until a couple of years ago, is now singing, loudly, clearly, and happily. And then last week, something happened that we would not have believed possible not so long ago. Our son’s classmates elected him to the school’s Student Council. He showed an interest in running (a miracle in itself); his teacher felt he was worthy of nomination, he gave a short speech, and the other students voted for him.

The Church speaks of “outward and visible signs of an inward and spiritual grace.” I don’t intend to compare what we do to religion or faith; it is science. But what the Rankin family and our friends see on a constant basis can be called outward and visible signs of an inward healing. We aren’t ready to declare victory and proclaim that our son is completely “recovered” . . . not yet. But we’re getting closer to that every day. And throughout our family’s journey, the outward and visible signs have fueled hope.

Our hope is real. And hope is a good thing.

SHOULD WE BE FAST-TRACKING THE H1N1 VACCINE?

In the vaccine debates, it seems that the most enlightened and enlightening reports in the mainstream media come from CBS News. And most of those reports come from Sharyl Attkisson. Here Ms. Attkisson moderates a civilized discussion of the safety issues surrounding the coming swine flu vaccine with Dr. Jennifer Ashton and Barbara Loe Fisher, Director of the National Vaccine Information Center. Neither of the panelists took an absolutist position. One must wonder if the discussion would have been so rational and thought-provoking if the NIH official, Dr. Anthony Fauci, hadn't backed out after initially agreeing to participate. Would he have acknowledged the relatively "mild" nature of the H1N1 virus as did Dr. Ashton? Would he have advocated a risk-benefit analysis as did Dr. Ashton?


Watch CBS Videos Online

SELF-ABSORPTION

It’s times like these that I always default to the plaintive cry of Rodney King: “Can we all just get along?”

We are not a rich family. When I was actively engaged in the practice of law, I was very good, but I wasn’t one of those guys who made piles of money. The kind of practice I had and the region I in which I practiced were not conducive to wealth-building. And of course, a child on the spectrum has a tendency to drain economic resources, even in a family with two working professionals.

When we uprooted our family and moved to build a better life for the Little Rankster, it was with the knowledge that life was not suddenly going to be easy. The disparity in the cost of living meant going from a 3200-square-foot house on a quarter-acre lot to a 2000-square-foot townhome.

It’s a very nice townhome, but a townhome nonetheless. That means we have all the joys of having our next-door neighbor being just a common wall away. It wasn’t too bad for a year or so. The neighbors kept pretty much to themselves, and didn’t seem to require an explanation of the noises that very occasionally emanated from our side of the wall. They had a baby of their own, and even having a typical child these days exposes one somewhat to the fact that there are a lot of kids out here on the spectrum. Then they sold their unit.

Our new neighbor was a young lady, in her early-to-mid twenties. She seemed pleasant enough, and was terribly embarrassed when her little dog kept squeezing through the fence to come into our courtyard (I kept assuring her it was perfectly okay).

We first became aware of a problem in early April, when we got a phone message from the property manager who said she had received “several complaints and numerous e-mails regarding the noise” coming from our unit. She specifically mentioned our dog barking at an early hour, and “wild banging on the walls.” She then threatened to take the matter to “the Board” if we didn’t eliminate the problem.

We were taken aback by the fact that our neighbor (we are in an end unit with just one common wall, so there could be no doubt who the complaining individual was) would not simply approach us and discuss the matter as a neighbor. Instead, she took her complaint to the property manager, who compounded the problem by letting “several complaints” amass before deciding to tell us.

The dog thing was easily taken care of. My wife and I both need to leave early for work, and we would occasionally let our dog out in the front courtyard to answer nature’s call before we would leave him alone. Captain Percival would signal the need to come back in with a bark. In fact, there are other unit owners in the area who have their dogs out at that time of the morning, and there is often barking coming from across the street, but we assumed the objectionable noise came from our dog. So we no longer let the dog out in the front during those hours, and I started getting up even earlier to take him out for a walk. In other words, we considered that complaint to have a reasonable basis, and we acted accordingly as neighbors should.

The wall banging was a little more difficult to deal with. We assumed, though, that what our neighbor was hearing was the Little Rankster occasionally dealing with his sensory issues by banging on the tub during bath time, or very occasionally on his headboard when he was frustrated. Those were the loudest things we could figure out that could be coming from our unit. But he never, never banged on the wall.

Armed with our assumptions ⎯ and they were only assumptions since the property manager wouldn’t return our calls and didn’t provide (and still hasn’t provided) copies of the complaints ⎯ we wrote to management explaining the situation, and reminded her and the Board that the Fair Housing Act really took the situation out of their hands. It was really a matter to be discussed between neighbors, and we expressed our willingness to discuss the matter with out neighbor.

And indeed our neighbor did come to discuss it. Unfortunately, she chose a time in the morning when my wife was loading up the Little Rankster in the car to get him to before-school care and herself to work (I had long since left for work). My wife let the young lady know that it was not a good time to discuss the matter and suggested that she come back later. Our neighbor stormed off. At a later date, after not hearing anything further, my wife tried to approach the neighbor, and was met with what can only be described as overt hostility.

We heard nothing further until a couple of weeks ago, when we got a certified letter from an attorney claiming to represent our neighbor. I noted that it was the same kind of letter I used to find myself writing for friends and regular clients, albeit not as well written as those I used to write.

Still the letter was interesting. For one thing, counsel indicated that his client had begun complaining in the Fall of 2008. That meant that several months had gone by before we were made aware of the situation. Had our neighbor taken a chance on actually speaking to us directly when she first felt aggrieved, could we have talked it out? I’d like to think that would be the case for most people, but I’m not so sure that would be the case here.

You see, the letter referenced having been informed that one of our family members had a medical problem, which was leading to the noise. She could only have heard that from the property manager: the same property manager we instructed to keep our son’s condition confidential, so that we could control the manner in which his ASD was explained. We’ve learned the hard way that leaving the explanations up to other people tends to result in the wrong message. And indeed, in this case the manager’s breach of our confidentiality create a misapprehension that no amount of explanation could cure.

There were little clues in the lawyer’s letter that it was the ASD that was causing more of a problem than the noise itself. Although counsel said he was “sensitive” to our son’s condition, he alleged that his client’s “own health has been detrimentally affected by the interruption of her sleep and by the stress caused by this constant pounding.” Moreover, it seems our neighbor’s property values are also affected because “no one who would be aware of this problem would want to buy her unit, and, given the severity of this on-going problem, the seller would be legally required to disclose it.”

If the problem is excess noise coming through the walls, a seller might be required to disclose a problem with construction, but to state that living next door to an autistic child decreases one’s property value is absurd . . . and more than a little prejudicial.

As it turns out, we no longer think our son is the source of the alleged noise problem. That was short-sightedness on our part, caused primarily because we have never been given the opportunity to learn any specifics about the complaints. But the lawyer letter cited an ongoing problem of pounding on the walls: i.e., a problem that was continuing. Again, there has never been any pounding on the walls. More to the point, however, the Little Rankster’s been going through several good months, and hasn’t really been pounding on much of anything for a long time.

After reading the letter from learned counsel, I came to the conclusion that the problem stems primarily from our neighbor’s unrealistic expectations about living in a home with common walls (be it an apartment, a condominium unit, or a townhome). She is likely hearing the same things we hear from her side: people walking on the stairs, washer/dryer activity (in her case, that activity has often been late at night), and dogs barking (our neighbor’s dog is particularly enthusiastic about alerting passers to her presence). None of these things are ⎯ nor could they be ⎯ as disruptive as our neighbor seems to believe.

We could easily voice the same complaints about our neighbor that she has been so forceful in voicing. It is true that there might be more noise of one kind coming from a unit with a child in it, regardless of whether that child is autistic or neurotypical. Our child, on the other hand, has never thrown a loud party into the late hours (as our neighbor did on a recent Saturday), and our child does not leave behind a trail of cigarette butts on the sidewalk (one would think that someone who is in such a delicate state of health might want to refrain from smoking). We never considered complaining about her conduct because we understand the setting we are living in, and we have adjusted our expectations accordingly.

Any question that the problem is our neighbor’s expectations was put to rest about a week after we got her attorney’s letter. I got home from work, and found a message on the machine. That morning, probably no more than five minutes after my wife left for work, the 911 operator called to say that the police were outside and would like a word. My wife called 911 and got the story. Our neighbor had called in around 7:15 am, to report that there was an awful pounding on the walls that wouldn’t stop. By that time, the Little Rankster had been out of the house for at least 15 minutes. The only thing that could have made the noise was the dryer my wife briefly ran to take care of something she need to wear to work.

That’s right, the police were called out because we had the temerity to run the dryer after 7:00 am. The police came, heard nothing and left. Upon getting the whole story, the 911 operator had a pretty good laugh.

There is an obvious irony here. Some people label autistics as being self-absorbed and uncaring. The Little Rankster most certainly does not fit that absurd stereotype. But someone else surely does.

Actually, now that we’ve been up here for a while, we’re starting to think about taking advantage of the low housing prices and look for a real house. The only problem is selling our townhome. Who would want to purchase our unit after we have to disclose what kind of neighbor we have?

HAPPY FATHER’S DAY

I was lucky to have the father I had. I don’t recall him ever giving me advice on any subject other than fishing (and Lord knows, he knew his stuff about that). But the life lessons I learned from him just by observing how he lived his life (especially how he acted toward other people) were priceless.

Those lessons from my father certainly have helped me to be a better father. The best lesson on fatherhood I got from him was to let my children show me how to be their servant. I’m not talking about being a slave, kowtowing to their every whim. I’m talking about being a servant in the best sense of the word: placing the needs of the children before my own.

I’ve met a lot of dads of special-needs kids over the last few years. Some simply don’t want to deal with the fact that raising their children isn’t easy. Others welcome their children’s disabilities, but primarily because it’s a way for them to be the center of attention themselves by shouting to the world that they are superdads. Those two types are the men who would be less-than-ideal as fathers regardless of their kids’ challenges.

On the other hand, I’ve met a lot of fathers who understand that fatherhood requires sacrifice ⎯ of time, of money, and of ego.

Although the challenges are different with every individual child, good fathering (and mothering) is always a function of sacrifice. Happy Father’s Day to all the servant dads out there.

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.

TALKIN’ SENSE IN NEW BRUNSWICK

When I first saw that Alison Singer, Karen London and Paul Offit had joined forces to found the inaptly named Autism Science Foundation, my first thought was “birds of a feather flock together.”

The reaction of Canadian blogger, Harold Doherty, had a somewhat less juvenile take on it. He posted his thoughts on the obvious truth that there is more politics than science behind this new organization. (Read it here.)

What is most striking about ASF is that its statement that vaccines are not involved in autism takes up m ore space in its stated goals than stating just what it is they do intend to research. At a time when more and more voices in medicine and science are agreeing that the vaccine-autism issue is not dead, ASF is insisting that there is no issue. As Harold writes:

Given the existence of legitimate questions concerning possible vaccine autism questions it seems odd for an organization founded to provide quality scientific research to make such a dogmatic statement conclusively ruling out those very questions. It also seems odd that the founders of this organization believe that public confidence in the vaccine program will be maintained by shutting the door on areas of research in which substantial numbers of the population believe are legitimate areas of inquiry - including members of the public like Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Duane Alexander and Dr. Jon Poling.

If the issue were as dead as the folks at ASF want us to believe, there would be no need for them to talk about how they’re not going to study it; they’d tell us what it is they plan to delve into. Ms. Singer and Dr. Offit are telling us to pay no attention to that man behind the curtain. But if we take a peek, we’ll see what it is that makes all the smoke and noise.

Go here to read Harold’s post.

MR. PRESIDENT, DON’T MAKE ME REGRET MY VOTE

Imagine, if you will, that we’re back in the sixties. Imagine that President Lyndon Johnson wants to appoint a national coordinator to oversee all of the civil rights programs that are being enacted. Now, imagine that LBJ appoints Lester Maddox to the post.

Sounds ridiculous, doesn’t it? Yet, there’s something in the air that could prove to be every bit as ridiculous.

Over at Adventures in Autism, Ginger is reporting the rumor that Alison Singer is lobbying to get appointed to the position of Federal ASD Coordinator, which is being created under the new administration. I’m not usually ne to report rumors, but then neither is Ginger. If she’s blogging it, I can only assume that there must be some substance there.

Alison Singer assuming that kind of leadership role would be so wrong in so many ways. Please go here to Ginger’s blog, and read her post. Then leave your comments there.

THE DEBATE ON LARRY KING LIVE

Below is an edited version of the recent Larry King Live, addressing the open question of the role of the absurdly expanded vaccination schedule and the autism epidemic. Although Jenny McCarthy and Jim Carrey were the main attractions, the real stars of the evening were Dr. Bernadine Healy and J.B. Handley.

The video includes a remarkable display of intellectual integrity from Dr. Healey, the former Director of the NIH. Unfortunately, this edited version does not include any of Mr. Handley’s remarks.

I have always been thankful for Mr. Handley’s contributions to keeping this debate in the forefront. I must admit that there are times when his past demeanor may have elicited a slight wince and the occasional chuckle. On this night, however, he displayed the complete package as a spokesman. He was in control of the facts to a far greater extent than the medical “experts” on the other side, and his manner was a fine balance of rationality and emotion. Very nice job, indeed, JB.

Those who saw the show were introduced to a young girl, with what appears to be relatively profound autism. As every parent of an autistic child knows, however, ASD does not indicate a lack of intelligence or a lack of desire to communicate. Carly Fleischmann has started her own blog to express her thoughts. She was in communication with the show, and some of her comments were posted to the Larry King Live blog. One of those comments was: “I don’t think we can cure autism but I wish we could. The goal should be to get are inner selves out.” I hope that young Ms. Fleischmann elaborates on that thought in her blog in the days to come.

AUTISM YESTERDAY

Each family on the journey of recovery has its own individual story. We all have our own ideas as to how we got here. We all have different approaches to the process of cure, arrived at in consultation with professionals and by considering the specific underlying problems our kids have. The one thing we all share is hope.

Here’s a new film from Generation Rescue, in which five families share their stories.


"AUTISM YESTERDAY" Autism is Reversible from JB Handley on Vimeo.

WORLD AUTISM AWARENESS DAY

It’s World Autism Awareness Day, as declared by the United Nations General Assembly. How nice.

And of course, this WAAD is simply a lead-in to “Autism Awareness Month.” Over at Age of Autism, Kim Stagliano has suggested renaming it “Autism Epidemic Action Month,” because:

We’re doers ⎯ not do-gooders. There’s a difference. Awareness is no longer enough. It never was.

That’s a fine suggestion, but for now we’re stuck with the observances recognized by mass media.

It all begs the question; why do we need to be more aware? Is there really anyone out there that doesn’t understand there’s a lot of autism out there these days?

But I suppose there is a need for awareness. The world needs to be aware that we are seeing a real epidemic, that it’s not just a matter of better diagnosis. The world needs to be aware that the question of “why” has not been answered, and that we need to get to the truth, or things are going to get worse. The world needs to be aware that the so-called mountain of evidence supposedly leading away from particular causes has disproved nothing.

The world needs to be aware that we take very seriously our responsibilities as parents. Harold L. Doherty, at Facing Autism in New Brunswick addressed that the other day. He confronted those who attack parents for daring to suggest that there may be non-genetic components in causation, and there may be a hope for a better life through the process of cure. In his well-written post, Harold states:

It is parents who represent our children, protect them and advocate for their best interests. We are not advocating for an abstraction, we are not advocating on behalf of “autistics”, whatever is meant by that expression when used by people who claim to be autistic but claim that autistic disorder is not really a medical disorder. Attacks on parents advocating for their children with autism disorders are attacks on autistic children by attacking those who protect and advance their children's interests.

Reading that reminded me of something my friend, Ginger, wrote a few years ago, in response to a comment questioning who we are to undertake the “drastic” step of attempting to cure our children of autism:

Who are we? We are their parents. 



Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold. 



We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.

Indeed. Our everyday reality is to constantly weigh potential benefits against known risks, and to inform all of our decisions with love.

On this World Autism Awareness Day, I’m aware that the life of my family has been made infinitely more difficult because of ASD. I’m also aware, however, that ASD has provided the opportunity to be inspired in my life. I am inspired by people like Ginger and Harold, and all of the others I would never have met but for the common struggle. I am inspired by my older children who constantly demonstrate unconditional love and patience for their younger sibling. I am inspired by my wife, who works with a small team of amazing professionals to make my son’s life better. And most of all, I am inspired by the Little Rankster. He isn’t ready to give up; why should I be discouraged.

Be aware. Be very, very aware. Be aware that we are here for our children.