Tag Archives: vaccines

Advocates and allies

I had originally planned for this post to be an in-depth look at what it means for a non-autistic person to be an advocate or ally for autistic people.  There has been a lot written on the subject over the past couple of months and I was going to use this as a way to sort it all out in my mind.  Luckily (especially for you, since this post is now much shorter), a recent discussion on this blog helped me understand it all in a nutshell.

In a comment to a recent post, CS had the following to say about the vaccine-autism debate:

The vaccine argument is causing a lot of harm I believe because it is taking our limited time we have in the news and monopolizing it with trivalities (sp?) that aren’t important for inclusion, education, opportunity, independence and safety which is what most autistic people struggle with their entire lives.

This came toward the end of a long comment discussion concerning Kristina Chew‘s appearances on Newsweek.com and NBC’s The Today Show last week in which she was asked, as the mother of an autistic son, her opinions about vaccines.  (The media interest was due to the recent release of Autism’s False Prophets.)

In my original concept for this post I had considered using Kristina as an example of a good ally for autistic people, using Phil Schwartz’s list of what makes a good ally as a starting point.  CS disagrees with me, and believes that she is “not being a good ally when she does these things.”  He also uses Phil’s essay as the basis of his opinion.

Read the whole comment discussion for the whole picture, but the gist of CS’s complaint was that Kristina was being self-serving, and not being a good ally for autistics, because she engaged in – and reported on – the interest in the vaccine/autism question instead of reporting on the lack of interest that the mainstream media has for hearing from autistic people about what is important to them.

Here is an excerpt of my response to CS from that comment discussion:

The vaccine argument is causing a lot of harm, but not because those who don’t believe in a link are engaged in the argument. It causes harm because it exists. Those who try to squash the belief in a link between vaccines and autism may not be engaged in the type of activities that directly benefit autistics, but if no one puts down the belief in a link by the general – scientifically illiterate – public then many of those direct actions will likely come to naught.

The non-autistic people, especially parents, who believe in the link are not likely to listen to scientists, non-believing celebrities, or autistics when it comes to arguments against a link. Those with the most chance to sway their opinion are the parents – the non-autistic parents – of autistic children and adults.

What do you think?

And if you are autistic, who among the non-autistic do you see as true advocates, as good allies?  Are there any?  Despite what Phil tries to get across in his essay, is it even possible for a non-autistic to be an “autism advocate” or a good ally?

Update:  As a reference, here are some of the things that have influenced me over the past couple of months.  In some cases it is the post itself, in some cases it is the discussion in the comments:

I’m sure there are more, but these are the ones that stand out in my mind.

Is Your Sen. or Rep. Attending Rep. Maloney’s Vaccine-Autism Meeting?

As the folks at Age of Autism have pointed out, Rep. Carolyn Maloney (D-NY) is hosting a special briefing next Wednesday (24 September 2008) for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  I took their advice (kind of) and sent my Senators and Congressman a quick note about the meeting:

Dear …  ,

On Wednesday 24 September, Rep. Carolyn Maloney (D-NY) is hosting a special briefing for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  As the parent of an autistic son, now 17, I’m asking that you not spend the valuable time of you or your staff at this meeting.

As you may have guessed, I don’t subscribe to the belief that vaccines, or anything in them, cause autism. All of the science to date has found no causal link between the two, and my own personal experience does not lead me to think otherwise.  (My other son, age 15, is not autistic.)

I do encourage you and your staff to become involved in the discussion about autism.  I believe that the most effective use of your time and influence would be in the areas of improving availability of services for children with autism, education and support for parents of autistic children, and – perhaps most importantly – improvement of services and support for adults with autism.

Thank you for your consideration of this matter.

Sincerely,

Or in other words:  Don’t waste your time on this, there are other more productive things you could – SHOULD – be doing for children with autism, their parents, and adults with autism.

PLEASE CONTACT YOUR US SENATORS (HERE) AND MEMBERS OF CONGRESS (HERE) AND URGE THEM TO NOT ATTEND OR SEND A STAFF MEMBER TO THIS MEETING ON CAPITOL HILL.

Weigh in now at OpposingViews.com – Are Autism and Vaccines Linked

Just a little while ago, I learned of (what is to me) an interesting website: OpposingViews.com. As the name suggests, it is a place for people to discuss their opposing views. A newly started debate entitled Are Autism and Vaccines Linked is up and running that I thought my readers would be interested in.

I’m not exactly sure how the site works, or how “experts” are verified, but as of the time I write this post, the debate seems to be between Dr. Jennifer Shu on the NO side and the National Autism Association, SafeMinds, and Dr. Karima Hirani on the YES side. Those of us who are not “verified experts” can post comments to the arguments put forth by the experts. At the time of me writing this, there are 21 comments, all from supporters of the YES argument trying to shoot down the NO arguments.

I have the feeling, though, that will change very quickly as word gets out about this public debate.

Just a plain, ordinary, loving, proud parent

I started writing about autism, specifically about being an autism parent, just over three years ago. One of my goals was to provide information that would be useful for parents who have recently received a diagnosis of autism for their child. This post is my attempt to give you, as a parent of a newly diagnosed autistic child, an idea of what you will likely find as you try to understand what that diagnosis means to you and your child.

Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean. How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc.

It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing. A few things you can expect to hear from others, or read in blogs, etc:

“You’re going to screw your kid up if you get him vaccinated.”
“You didn’t vaccinate? Why the hell not?”

“If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
“If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”

“Why are you trying to mainstream him at school, he would be better off in a special placement.”
“Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”

“You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
“Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”

“You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
“Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”

These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.

In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause). Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure. These are all things you will have to decide for yourself.

As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure – sometimes referred to as recovery – him through diet or other medical treatment. There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy. Importantly, the vast majority of these advocates are not autistic themselves.

Once you realize this, you will discover a separate world of autistic advocates for autism. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured. You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.

About two months ago, autism blogger Lisa Jo Rudy challenged parents to “quit autism for just one day.”

Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.

Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.

Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting. My response to Lisa’ challenge reflects this attitude:

Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.

I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.

I am, to use your words, “just a plain, ordinary, loving, proud parent.”

Every day.

Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent. Everything else is just details.

How about a nice game of chess?

Remember at the end of the early-80’s movie, War Games, when Matthew Broderick’s character David showed the WOPR how to play tic-tac-toe, and then how the WOPR learned the futility of global thermonuclear war by comparing it to tic-tac-toe?  And how WOPR (or Joshua) then commented on the futility of a game that can not be won (except by not playing), and asked David if he would like to play a “nice game of chess”?

I can’t help wondering if the whole vaccine / autism thing is an exercise in futility for both sides, a game of unwinnable tic-tac-toe, or if it is a game of chess, still in the opening phase with the middle-and end-games left to come.  And if it is a game that can be won, what exactly is it that the victors will win?

They shoot horses, don’t they?

The anecdote The Family Doctor , published by Julie Obradovic on Age of Autism a couple of months back, is a well told story of how she finally succeeds in converting her brother, a pediatrician, to her understanding that vaccines are bad and likely a cause for autism. If you are new to the question of autism and its causes, and come across this story early on in your search for answers, chances are it might be pretty influential.

But something has been bugging me about the story since I first read it. I couldn’t quite put my finger on it, so I haven’t written about it until now. It was a discussion I had with Autistic Bitch From Hell in the comments to my recent post A View From the Middle that made me realize what was so troubling to me about the story.

Here are Obradovic’s brother’s thoughts on autism and an autistic child:

“I tell you, I would rather she got Polio than Autism. At least her mind would be in tact. At least she could talk to me, experience life with me. No offense, but some of the stories you send me about these kids? Well, if they were horses, they’d be put down just to ease their misery. What parent can watch that, or live with that? What child deserves that?”

In other words, an autistic life is not worth living. And an autistic child is not worth parenting. With this mind-set, it is no wonder that they want to find a way to eradicate autism.

I just hope those of you trying to learn more about autism take this attitude into account when you read stories and opinions about vaccines as the cause of autism.

How much risk is too much?

In a comment to Lisa Jo Rudy’s brief examination of some of the issues in the autism-vaccine debate, Dadvocate had this to say:

Rather, it is that some, in their zeal to promote public health may be erroneously accepting a level of adverse reaction risk that is too high (and possibly avoidable by reverting to a more conservative schedule)….

The obvious (to me) question from this is, “Given that the current vaccine schedule results in an unacceptably high risk of autism in vaccinated children, what level of risk is acceptable? If the current risk is 1-in-150 (which, I should note is actually the prevalence and not the odds of being autistic), what risk is acceptable? 1-in-500? 1-in-1000? 1-in 10,000? None?”

This question is really for those who believe that vaccines are to blame for autism, and is but one strand in a much more complex thread. Among other things, the risk of individuals becoming autistic would need to be weighed against the risk to the public at large of reducing vaccinations.

At the risk of retreading old ground, exactly where do you think the balancing point would be between protection of individuals from autism and protection of society from communicable diseases? (If you don’t think this is a valid question, by all means let me know. I’m interested in that possibility as well.)

A view from the middle

I had lunch with an old friend recently, and the topic of conversation wound its way to autism. I, of course, am the parent of an autistic son. As it turns out, his nephew is also autistic. He wanted to understand autism, and I wanted to help him understand. But I didn’t know where to start.

Sure, there are many angles from which to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in.

As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here).

To tell the truth, I don’t know what to believe about autism. And it is not for a lack of trying. This post, according to my WordPress stats, is my 201st posting to 29 Marbles. I have covered a lot of autistic ground in the last 3 years. Over the course of those 3 years, and 200 posts, and numerous comments to other blogs by parents, autistics, and others with an interest in autism, I’ve considered a lot of different ideas and seen my beliefs and thoughts about autism oscillate a bit as I considered new things. I always seem to come back to the middle though, where I don’t really know what to think.

Over this time, I’ve also had the opportunity to observe how the views of others have evolved. In most cases, it seems, the longer someone has been blogging and thinking about autism the more their beliefs, and their blogging, have gone toward the extremes of the debate. Just check out Age of Autism (for the extreme view of the bio-med position) or Neurodiversity.com (for the extreme view of neurodiversity).

The thing is, I don’t really believe any of those things. Or, maybe it would be more accurate to say I believe in all of those things. Autism is, after all, a spectrum of disorders, so it only makes sense that the causes and cures (assuming either exist) would constitute a spectrum as well.

For someone to say that all autism is nothing more than mercury poisoning is irresponsible, though I don’t doubt that at least one case of autism could be traced directly to mercury. To say that all autistics live miserable lives and will never be happy or able to live and function on their own is simply untrue, though it goes without saying that there are some autistics whose life will be exactly like that.

On the other hand, to say that all autism is solely the result of genetic factors – with no influence from environmental triggers – is irresponsible, though I sincerely believe that some cases of what we call autism are indeed purely genetic manifestations. To say that all autistics have the potential to live happy lives and live and function on their own is as untrue as the opposite example above, though obviously some autistics will find happiness and success on their own.

Some will say I’m just wishy-washy, a waffler, a flip-flopper. I prefer to think that I’m simply staying open minded, because when you get right down to it not all the evidence is in. Not even enough evidence is in to say anything specific about autism in general.

And that, I think, is my point on this, World Autism Awareness Day. If you are new to autism, because you have a newly diagnosed child or you are just curious, enjoy the view from the middle for a while. Listen to what the extremists and fundamentalists have to say and think about it for yourself. Pay attention to your own instincts. Get to know your child – as he or she is, not how you wish they were – and figure out what YOU think is best. Not just for the child, but for you. For your spouse. For your other children.

There is no simple answer, no matter what you hear, and there is no simple path to follow as you make your way through the world of autism.

The Autoimmune Epidemic

While wandering the aisles in the local Borders book store, I saw Donna Nakazawa‘s new book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope. This description is from the book’s official site:

Multiple sclerosis, lupus, Type 1 diabetes, rheumatoid arthritis, and nearly a hundred other chronic autoimmune illnesses are part of this devastating epidemic, in which the human body, acting on misread signals, literally begins to destroy itself. Alarmingly, the occurrence of many of these diseases has more than doubled in the last three decades, signaling a disturbing trend that can be directly tied to environmental factors in everyday modern life—including our daily exposure to a dizzying array of toxic chemicals.

With the conversation around a recent post fresh in my mind, I was drawn to the book to see what the author had to say about autism in the context of this autoimmune epidemic. There is one section, consisting of two pages, where she mentions the possible relationship of autoimmune issues, vaccines, and heavy metals (specifically mercury in the form of thimerosol) to autism. I don’t recall the specific wording, but she basically left it as, “We’ll have to wait and see what comes of the research.”

Has anyone had a chance to read this book yet? Any thoughts?