Wednesday, September 14, 2005

R-E-S-P-E-C-T (Find Out What it Means to Me)

I was privileged to have the parents I had. We were not wealthy, but the lessons they gave me were beyond any price.

My father, Hugh F. Rankin, was a relatively well-known historian specializing in the American Colonial period. In the 1930’s he studied engineering and worked in the construction field, building roads and bridges. During World War II, Dad served in the Army, building airfields. He injured his back so badly that he was forced to leave his original field behind. He returned to school on the G.I. Bill, and rekindled a lifelong love affair with history.

Dad was part of a group of post-war graduate students, many of them at the University of North Carolina, who became legends among southern historians. A couple of decades ago, another great historian, the late, great Dewey Grantham, interviewed many of his peers from that era for a project of the Southern History Collection at the UNC Library. My father was one of the interviewees.

Years after my father’s death, I came across a transcript of Dewey’s interview with him. They discussed everything but history: influences, the joys of teaching, family background, etc. In the middle of their conversation, Dad discussed one of the most important life lessons he ever learned.

My father was raised in a small town in North Carolina’s tobacco country. Although he was raised in a family that was relatively free of racial hatred, the culture of the time was one of class and race divisions. It was just understood. One day, Dad was supervising the construction of a road, and they encountered an unanticipated problem with the terrain. All of the engineers, designers, and supervisors were huddled, trying to determine the solution. None of the decision makers paid any attention to a middle-aged African American gentleman standing nearby. He was employed in the only position available to him: delivering water to the white workers.

As the group argued about potential solutions, Dad grew more frustrated because each suggestion he heard was impractical. After he pointed that out, the water man, who had been listening intently, decided it was time to pipe up: “It’s simple Cap. You just move that over there.” As the others rolled their eyes and went back to arguing over their elegant solutions, Dad looked to where the water man had pointed. He then looked at the water man, and then turned to the others in the group and argued for the simple and direct solution that the ignored African American suggested until the others reluctantly gave in. The solution worked. And my father vowed to himself that he would never again dismiss anyone based on their appearance or station in life.

Dad never told me that story while he was alive. He didn’t need to. Every moment I spent with him was a lesson in respect learned from observing the way he interacted with people. On family road trips -- in the pre-Interstate Highway days before self-serve gas stations -- we would pull in to rural filling stations with attached country stores. Whether the person working the pumps was an elderly African American, a 12-year old, barefoot boy, or a young adult in a starched shirt, my father’s request was always worded the same and delivered in the same respectful tone: “Fill it up with high test, please, sir.” In whatever context I witnessed Dad interacting with anyone, he always deemed every human to be worthy of respect until he or she showed otherwise. My father never had to tell me that; he just lived it and I absorbed the lesson.

About a month ago, before a hurricane rudely interrupted my life, I posted some thoughts about what is known as the neurodiversity movement. The rhetoric I saw on other sites from both the neurodiversity and biomedical communities seemed harsh and defensive. I wanted to see if we could all stop shouting long enough to listen to each other. The dialog that was started exceeded any hopes I could have had. Since those posts, I have continued to get to know some of the neurodiversity crowd through comments at blogs and through email. I may disagree with some of what is said, but I respect those people and their opinions.

When you get right down to it, we have far more in common that we have real divisions. The divisions are largely the result of semantic differences. As we continue to discuss things in a rational and respectful manner, we develop a common lexicon and we learn.

Anything worth believing in should be able to stand up to scrutiny. I firmly believe in what my wife and I are doing for my son through biomedical interventions. The respectful conversations I have had with those who think otherwise have not shaken my belief. I will continue to encourage others to consider walking the same path we are walking. But I have learned enough from my new friends that I am starting to recognize the limitations of what we are doing.

In the biomedical community, we often throw around the word “cure.” When I use that word, I know what I mean and most other people who practice biomedical know what I mean. We are seeking to alleviate the dysfunctional aspects of ASD in our children. We will never alter the genetic makeup of our children, and to the extent genes make them autistic, they will remain autistic. I can live with that. But I believe that one or more environmental insults has acted in concert with my son’s genetic makeup to create stumbling blocks that keep him from using all of this gifts. I cannot believe I am wrong in trying to reduce the effects of those environmental insults.

On the other hand, when I am confronted with the eloquence of Kathleen Seidel or the extraordinary testimony of an adult with autism who wants no “cure,” I have to realize that the issues surrounding ASD are not easily addressed by one-size-fits-all answers. Could the “cure” we seek help other people who reject biomedical interventions? Perhaps, but that’s not a necessary given. More importantly, that’s not my choice to make.

We have much to learn from each other, but we cannot learn if we don’t listen. It’s called respect.

Thanks Dad.

8 Comments:

Anonymous Patrick Sullivan Jr. said...

Well said Wade.

The level of discourse between the two "camps" is terrible. And perhaps that is part of the problem, the fact that people have chosen sides and seperated into two camps -- those in favor of neurodiversity (let it be) and those who wish to alleviate the painful symptoms of their children through biomedical treatments.

I have actually begun to think though that there probably does need to be a clearer distincition made. There is obviously a HUGE difference between a non-verbal child who flaps their hands, has massive GI problems, screams at night, etc. and someone who can write blog entries...Is it really fair to say that those are on the same spectrum?

Regardless, the tone of your post sets a good example to follow. Thx!

- Patrick Sullivan Jr.

9/14/05, 11:52 PM  
Blogger Kristina Chew said...

Wade, this is eloquent and wise and addresses an issue I think about all the time. I have been troubled by the all too often rancorous exchanges between those who call for "defeating autism" and see its cause as resulting from an environmental insult, and those who think autism is genetic. I wonder if the terrible legacy of Bruno Bettelheim and the "refrigerator mother" theory is that we parents shrink from saying that we might have "caused" or "contributed" to our child's having autism. I have particularly enjoyed blogging because it has offered me the chance to be very "public" about Charlie, and autism, and his challenges and progress.
Pat, I have been thinking more and more that while, at first thought, there seems little in common between a non-verbal child such as you describe and an individual who can blog. My son falls a bit more into the first category, though not completely. Yet I see something similar, in common with, him and individuals with Asperger's I have spoken to, at academic conferences and in the college classroom.

Looking forward to more thoughtful discourse on all of this, best regards, kc

9/15/05, 11:05 AM  
Blogger Michael "Sotek" Ralston said...

No, Pat, there isn't a necessary difference.

Indeed, they could be the same person - and that's why the level of discourse is so terrible.

People like you are telling people who have difficulties with some things that they are valueless and worthless and must be "fixed" to have value as a human being. This is a problem.


People like me are saying that we don't WANT to be "fixed", and we are saying we have value. But that's not what you're hearing. You're hearing us say that everything the "cure" movement does is wrong. And that's a problem, too.


I feel that the entire idea of a biomedical "cure" for autism is dangerous and morally wrong.

For a GI disease, which has NOTHING TO DO WITH AUTISM - yes, a biomedical cure is appropriate.

For nighttime screaming? The cause matters. Is the kid afraid of the dark? (I couldn't sleep until I was twelve or so unless the lights were on, I was that scared). Then a biomedical cure is really a bad idea. Is the kid suffering from pain? Then yeah, a biomedical cure for the pain would be a good idea.

For autism itself? No, a biomedical cure is not appropriate, and is indeed immoral.



Now, autism DOES have problems - but it also has strengths. Ignoring those strengths in your children is a very good way to forget that they're PEOPLE, and to stop caring about your child as a person, and start treating them as a "drain on society".

Hand-flapping - why should that need a cure of any sort? I do it sometimes when I'm stressed. I bet you have SOME sort of bad habit when stressed - maybe you chew your nails, maybe you do something else ... but everyone I've known did SOMETHING when stressed.


The best thing to do for an autistic child, Pat, is to help them learn to emphasize their strengths, and compensate for their weaknesses. And if those weakness are purely due to autism - lack of eye contact, for instance - a biomedical cure is not reasonable.

Eye contact can be learned. It really shouldn't need to be - but I guess everyone has to be willing to make allowances for the private primate parts of other people - RIGHT?

Non-verbality? That's a problem - but it doesn't have to be as big a problem as you think.

My sister is non-verbal - BADLY so.
She can still communicate, because she has little picture squares. If she wants to get something across, she picks the appropriate squares, and hands them to you. And that's not biomed - but it lets her communicate.

And for that clearer distinction - that's absurd. My sister and I are obviously on the same spectrum. If you had known me from birth to age two, and my sister from birth to age two ...

... you would have thought I was highly autistic, and my sister was completely normal.

And if you knew me at age 6 and my sister at age 6? You'd know my sister had problems (and she does - I'll admit that), and you'd think I was just a shy bookish child.

So how do you figure my sister and I aren't on the same spectrum? I showed more symptoms earlier, and fewer later - hardly an "obvious difference".

9/15/05, 11:19 AM  
Blogger Anne said...

I think the most important distinction between a non-verbal child who flaps her hands, etc. and someone who can write blog entries is age.

Pat, check out the web site that Wade mentioned in his R-E-S-P-E-C-T post:
http://www.gettingthetruthout.org

I think you would find it fascinating!

9/15/05, 6:01 PM  
Blogger ballastexistenz said...

Or context, rather than age.

I can't speak. Sometimes can't type. I flap my hands. I have massive GI problems. I scream at night. (And in the day.) Etc. And I write blog entries.

I seem built to defy stereotypes. Annoying sometimes (even for me).

9/15/05, 8:44 PM  
Anonymous Creme Brulee said...

The gut problems in autism are assumed to be universal or universal to the kids who regressed.

Not so. There was a study done of autistic children using a hospital, they didn't use the hospital for gastro problems at any higher rate than the normal kids did.

If normal kids can have diarrhea and constipation, why can't a percentage of autistic kids have that? It's not like being autistic endemnifies one against gastrointestinal problems.

Until you know more about autism and how diverse the population is, you can't be drawing lines of demarkation. Amanda Baggs and Joel Smith are both non-verbal and highly articulate.

I understand the concept of being respectful, I just can't maintain it in the face of absolute falsehoods stated by people who don't know what they are talking about. It's so aggravating.

If you try to lay out 7 solidly based scientific points they can be countered by one conspiracy theory.

If you try to lay out 7 more solidly based scientific points you are accused of being a paid pharmaceutical plant spreading lies for money.

If you try to lay our 7 ethical points showing why acceptance is the first thing children need and not to be paraded in public with signs that say "I am mercury poisoned, Thanks, Paul Offitt" or similar slogans, you are accused of not understanding how the parents suffer so.

If you try to tell the parents that they are wasting their hard earned money you are called an evil parent basher who is trying to keep their child from being healed.

For crying out loud, telling you that you are wasting your money is a kind thing to say, trying to help you see that you are being robbed is a loving thing to do.

There is no middle ground. Either mercury in vaccines can cause autism or it can't. There's no maybe at this point. Though I admire those who are trying to find common ground, I can't see what it could possibly be. So long as the discussion can return to treatment and causation, there is no common ground.

9/16/05, 1:46 AM  
Anonymous Patrick Sullivan Jr. said...

Wow! Didn't realize my thinking out loud would cause such a commotion. Let that be a lesson to me.

First off, let me disclose that I do NOT have any autistic children myself (I don't even have any kids). So my "Is it really fair to say that those are on the same spectrum?" comment was made without the personal, hands-on experience of the different types of autistics across the syndrome. Maybe it was uncalled for. I certainly did not mean to offend.

One thing that stands out to me from the reaction here (which is common to other reactions elsewhere) is how the neurodiversity crowd keeps "yelling" at those parents who want to use biomedical treatments for their autistic children, (paraphrase) "stop trying to 'cure' us and stop labeling us as worthless."

I am not saying that, nor have I ever said anything like that. That may have been said by others, but I have not seen it.

Parents like Kevin Champagne have used biomed treatments to improve the quality of life for their kids. If these kids are on the painful side of the spectrum, why is this approach so wrong? Especially if it works??

Michael, I don't know that I can address each of your points, but you said, "No, Pat, there isn't a necessary difference." Isn't there a difference in severity of all the symptoms? For instance, the girl on the site that Anne pointed out uses a simplified board as a "tool" for all her communications. (I do not say this to be deeming to the girl.) Others along the spectrum can use a computer to write blogs. That seems like a big difference to me.

(And I'm not quite sure what to make of gettingthetruthout.org, so I'll just withhold any comments.)

Creme brulee, I think your last paragraph is right on -- "There is no middle ground. Either mercury in vaccines can cause autism or it can't."

I am no scientist. But based on my own research as a layperson, I do believe that the evidence clearly indicates mercury -- from medicine, dentistry, environment, etc. -- as a factor in numerous medical problems.

It can be argued by people much smarter and much more experienced than me how much of a factor it is. But I personally have come to the conclusion that mercury is a *significant* factor for autistics, because I cannot explain away the numerous stories like Kevin's that point to removal of mercury (and other heavy metals through chelation) as a definitive cause for relief of symptoms in his own son.

- Patrick Sullivan Jr.

9/16/05, 7:35 PM  
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2/5/09, 3:19 AM  

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