What can parents do to help the cause of autism advocacy?

My recent posts, and your comments to them, has got me thinking about the following question:

Aside from being a good parent, advocating for our autistic children when they are young, and helping them learn how to advocate for themselves as they get older, what are some things that parents can do advocate for autistics in general?

I know what the basic message is, but what I’m not sure of is how best to get that message out; to friends, family, local media, educators, etc etc.

I’m going to be “off the grid” for the next 10 days, so I won’t respond to anything right away. But I’m looking forward to reading your ideas and suggestions.

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.

A meditation on censorship

The following meditation on censorship comes from 365 Tao (June 13). It’s been on my mind lately, and Kristina Chew’s recent post The R Word and Not So Nice Language has prompted me to share.

Emperors uphold censorship,
But extreme repression leads to extreme reaction.
Individualists believe in freedom,
But extreme expression leads to extreme reaction.

The challenge, of course, is learning how to live and act in between these two extremes, and how to deal with those who inhabit the extremes.

Some thoughts on advocacy

In our society today, autistic children and adults are publicly represented almost exclusively by non-autistic advocates; sometimes parents or other friends/family, sometimes medical professionals, sometimes others with their own particular reasons. There are, of course, an increasing number of autistic autism advocates, but they have a hard time gaining acceptance as “legitimate” advocates.

In fact, there are several bloggers and commentators who decry the fact that the most vocal autistic autism advocates are those with Asperger’s Syndrome, and that these “high-functioning” autistics can’t (don’t) speak for those with classical (or “low-functioning”) autism. Which brought to mind something I read a couple of months ago in Richard Farson’s book Management of the Absurd:

Suppose, for example, I were to post this question: “If you were asked to predict the group in our society that is most likely to mount a liberation effort to end its oppression, would you have greater probability of success by picking the group for which you feel most sorry, or the one for which you feel least sorry?”

If you employed the unconventional, paradoxical approach, you would have picked the group for which you feel least sorry. Liberation movements usually arise from groups thought at the the time to be perfectly content. That is why they so often have taken society by surprise. Earlier generations, for example, complacently saw Negroes as being happy in their place. Women, before the 1960’s, were thought to be on a pedestal, adored and provided for by men. And today, in spite of the efforts of child advocates to call attention to the often oppressive conditions of childhood, children remain in the public mind as carefree, fully protected, joyful in their innocence.

Next question: “From where is the leadership of those liberation movements most likely to come – from those most oppressed by the conditions or those least oppressed?”

If you said least oppressed, you’re beginning to get the idea. The leaders come from outside or from the margins of these groups, seldom from the most oppressed segments. African-Americans were most helped at first by white abolitionists. Gloria Steinem is hardly the most oppressed woman in America. Children are represented almost solely by adult advocates.

From this description it makes a certain amount of sense that those in the medical profession (psychology is part of the medical profession, right?) and parents were some of the earliest and most visible advocates, and even more sense that those considered “high-functioning” would lead the way for autistics themselves. What it doesn’t explain, though, is why medical professionals, parents, and others are so reluctant to include autistics in their advocacy activities.

In a later section of the book Farson also discusses the fact that, in general, the person or group most affected by a problem is in the best position to determine a solution to that problem. Experts (or, in management terms, consultants) may sometimes be needed to help, but it is the “afflicted” that know best what they need.

If anyone who doesn’t believe that autistics can act as autism advocates is reading this, I’d love to hear why you believe that. And why you think that parents, doctors, or other “experts” are better advocates for autistics than are other autistics.

Autism, neurodiversity, and parenting

After over three years of blogging about autism, I’ve finally found the right words to express my feelings, as a parent, about autism and neurodiversity.

I admire and appreciate the important and necessary work of Jim Sinclair for both autism, and in general for people with disabilities. It is an extremely well-written and concise expression of rights of those with disabilities, the folly of many parents in missing the individual beauty and development of their own child in the constant misguided comparison with an incomparable standard, and the need for public accommodation and acceptance of autism as a different way of being. I myself have used that expression, “a different way of being”‘ in conversation, and it describes autism well, without defining it as less-than.

I do not, however, accept the entire message and implications of the neurodiversity perspective. I understand the need for a concise theory, but sometimes the neat and tidy package does not fit some of the intricacies of reality.

I do not accept a logic chain that precludes reasonable treatment efforts particularly early education / intervention from being defined as anything but unacceptance, of one’s child and autism in general. I fully love and accept my child, regardless of the abilities he has now or in the future. I don’t accept that it makes me a lesser parent in that I am sending the message that my son is “not good enough” or I don’t accept him as he is. I am a full parent to my children. The same parenting ideals hold for my daughter who is neuroytpical. I am parenting her, based on my love, her needs and what will help her to live a full and happy life. I have always worked hard as a parent to educate her. Does that then imply that I do not accept her? Of course not, it means that I want to educate, stimulate, give options for how to be in the world, teach skills to foster communication and connection with others, as much independence as possible by trying to be the best possible parent.

If you logically extend Jim Sinclair’s argument, then no child is accepted if they are being educated. If we accepted children as they are, then we would not need to alter their natural state of being by educating them. Would the neurodiversity perspective have me feel guilty or wrong for parenting appropriately as per my definition of good parenting?

Sinclair’s stance works well for natural disabilities, but autism may not always necessarily be the natural sate of being for a particular individual. I do believe there may be some on the spectrum who have autism from a genetic basis, or that autism began before birth, which may indeed fall completely under the neurodiversity umbrella. However, the possibility of environmental triggers playing a role in autism exists, which would mean the possibility exists for reversal or treatment of same, as an unnatural state of being in certain cases. I love my son whether he was born with autism, developed it in utero, or was injured environmentally at some point which triggered or enhanced it. Just as parents whose children have cancer fully love and accept them, but still want to find a cure or treatment, as well as give them an enriching and happy life, how ever the condition progresses, so I want for my son. As for using cancer as a comparison, the comparison begins and ends with the way I have used it specifically in the above example.

I agree with Mr. Sinclair that rigid insistence that the child with autism communicate with neurotypical people in only a neurotypical fashion is selfish and narrow-minded, as well and limiting to the parent-child relationship and the child’s development. I agree with the need for those with autism to have allowances, accommodations, ways and places to be in the world. Education of the public regarding the rights of those with autism is sorely needed.

I applaud the work and feel that the neurodiversity perspective is a necessary part of public education and awareness, but I wish the perspective did not require a scapegoat to secure the strength of its message. Parents benefit from such guidance to a point, but not the accompanying pressure and judgment.

Words cannot define the overwhelming love I feel for my son, and no “perspective” will tell me that I am not acting in his best interests, and that I as his parent, am in the appropriate position to do so.

Finally, I fully and unconditionally love and accept my son (and always will), and I want the very best education and treatment for him. The two concepts are not mutually exclusive.

As you may have gathered from the indented quote (and a reference to a daughter I don’t have), these words are not mine. They are the words of Marni Wachs, and autism mother from Winnipeg, Manitoba, posted as a guest blogger at Harold Dougherty’s Doherty’s blog Facing Autism in New Brunswick. I’ve touched on many of these themes before at various times, but have never been able to pull it together as neatly and concisely as Marni has.

Thanks to Marni for allowing these comments to be posted, and thanks to Harold, who is known for an occasional rant against neurodiversity and the Autism Hub, for posting comments that include the statement, “I applaud the work and the feel that the neurodiversity perspective is a necessary part of public education and awareness.”

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EDITED (7/22):  Based in large part on Amanda’s comments to this post, I’ve gone back and modified the original post by highlighting those things that I feel and believe.  (Of course, I could have been much more concise about it and simply said, as Wade did in the comments, “Parenting is parenting,” but conciseness is not something I’m often accused of.)

Also in response to Amanda’s comments, I will be discussing Jim Sinclair’s writings in a future post.

Comparative studies in “autism”

I have an irritating (according to some) tendency to play “devil’s advocate” in discussions about many things. I think this dates back to my junior year in high school when I learned the pleasures of debate in a philosophy class (gotta love the Jesuits!). More than anything, it was the admonition that some things were beyond debate – for example, abortion (remember: Jesuits) – that got me hooked. Nothing, as far as I’m concerned, is beyond discussion or debate.

Which has led me into a life of “comparison.” Comparative religion. Comparative politics. (It was, in fact, in a comparative politics class that I met my wife of 21 years.) My reading list over the years reflects this believe, as I make it a point to read books that discuss different aspects of a question or dilemma. Atheism / Religion. War / Peace. Republican / Democrat. Gun Control / NRA (and, of course, Ted Nugent ;-). Democracy / Communism / Fascism / …ism.

As I have become more and more of a comparative person I’ve also realized that I don’t have much tolerance for fundamentalism, which makes sense since fundamentalism is – by definition – “strict adherence to [a] set of basic ideas or principles”. For one thing, you can’t have a meaningful discussion with fundamentalists: they know what they know and believe what they believe and don’t really listen to what you are saying except to figure out which pre-fabbed counterargument they will use (sometimes they don’t even try that hard). The worst thing, though, is that there is no opportunity for true learning or growth for either me or the fundamentalist.

It seems inevitable, then, that I find myself thinking about autism in comparative terms and being frustrated at the level of fundamentalism that permeates all sides of the discussions and debates surrounding autism. The proverbial straw* that has brought this far enough to the front of my brain to write about was the recent departure of Michael Boll and his Autism Podcast from the Autism Hub.

To be fair, I haven’t listened to the Autism Podcast in quite some time. (Truth be told, I don’t listen to any podcasts – embarrassing, I know.) But in the wake of the dust-up surrounding Michael’s interview with Rick Rollens, I figured I should take a look through his archives to get an idea of what he has produced over the years.

What I found was an impressive collection of podcasts and interviews with people from many different backgrounds, perspectives, and thoughts on autism. Michael seems to be someone who is interested in learning all he can so that he can better understand the issues, and sharing the source of his learning so that others can do the same. My kind of guy.

But that most recent interview (which, again, I have not listened to) really got the ire up on the Hub. You can see the basics of that ire in the comments to the interview, but it went much deeper than that. As a member of the Hub, I kept up with the discussion about the interview on the Hub’s mailing list.

Though there are a lot of nuances to all the discussion, what it basically came down to was, “How dare he interview someone who is so against everything we stand for, not call him to task for it, and then have the audacity to actually publish it on the Hub? Never mind all the good things (ie, things we agree with) he has posted over the years, he spoke with someone who doesn’t share our beliefs, and shared those beliefs with the world, so he must not share them either.” Fundamentalism at its ugliest.

When I moved this site to this self-hosted location earlier this year, I also redesigned it so that it showed a wide variety of feeds and links. Yes, the sidebar includes a feed from Age of Autism (another group that is sinking quickly into fundamentalism) in addition to the link to the Hub, as well as links to neurodiversity AND bio-med autism parents.

At the time, I actually considered resigning from the Hub. Not because I don’t believe in the stated purpose of the Hub, because I do. But I knew then that I had some things I wanted to write about that would raise the hackles of some of the more “hard-core” members of the hub. Because as much as I agree with what the Hub is trying to do, I don’t always agree with how it is done. (There are, in fact, several Hub blogs I don’t read because of their incredible viciousness toward those who don’t agree with them.)

There are many topics in autism making headlines these days that generate seemingly endless, and amazingly opposite, reactions from people (Peet vs. McCarthy, anyone?). It is not my intent to turn 29 Marbles into a “comparative autism” blog, but I have the feeling I’ll be writing more along those lines in the future. I’m looking forward to some good conversations.

* Obviously not enough to make me write about this before, there has been at least one (anonymous) call for me to be removed from the Hub because of my “deference to … a loon.” To be honest, I’m surprised there haven’t been more. I’m sure there will be more in the future. And if it is the will of the Hub to remove me, I’ll respect that decision. But given a choice, I choose to stay.