29 Marbles

I think this has been a long time coming, but it is finally time to retire the blog “29 Marbles.”  There are several reasons behind this decision, but the biggest is that I’m tired of writing about autism separately from everything else, as if it is something apart from the rest of my life.  It’s not.

I’ll still be writing about autism, with the same random frequency as I do here, on a new blog I’ve started called Theoria cum Praxi.  Here is the direct link to the autism category.  If you subscribe to the RSS feed and want to continue to receive updates, you don’t have to do anything.  I’ll be updating the feed info at Feedburner within the next couple of days.  Of course, feel free to subscribe to the full feed at http://feeds.feedburner.com/TheoriaCumPraxi.  This new blog will also fill in for the also retired No Straight Lines, so I will be addressing the life/work topics from there as well.

I hope to see you all there.

Over the past couple of months, I’ve noticed many complaints from adults with autism that they are tired of non-autistics speaking for them.  The fact that I’ve only recently really noticed these complaints doesn’t mean the complaints haven’t been around longer than that, nor does it mean that the complaints aren’t valid.  There are many cases of non-autistics trying to say what they think is best for autistics.  (I don’t think I need to go into specifics.)

However, this is a distinct problem from something that has come up more recently:  complaints about the media choosing to interview non-autistics instead of autistics when producing stories about autism.   The most recent example of this is the reaction to Kristina Chew’s interview with Newsweek on the subject of parent’s reactions to “political pandering” to parents of disabled children.

Now I don’t know how Newsweek chose Kristina for the interview, but I have the feeling it had a lot to do with the fact that she blogs about her experiences parenting an autistic child. Not only does she blog, she blogs extensively, prolifically, and very eloquently.  In short, the interviewer already had a pretty good idea of what Kristina would say in response to certain questions, and in those cases where she didn’t she had a pretty high level of confidence that Kristina would come through.   Reporters are like anyone else:  if there is an “easy” way to do their job and a “hard” way, they will choose the easy way.

If you would like for reporters to seek out your opinion on something you care about, the trick is to make them see you as a way to make their job easy.  Blogs are a great tool to achieve this.   If you want to get your word out about being the parent of an autistic child, write about being the parent of an autistic child.  If you want to get your word out about being the autistic parent of an autistic child, write about being the autistic parent of an autistic child.  If you want to get your word out about life as an autistic adult, write about your life as an autistic adult.

It’s as easy as that.

Quite often as a I read stories and blogs about autism, I find something that I want to return to later or that I want to note with a short comment but don’t have the time nor inclination to blog.  So I’ve been trying to use Delicious, the social bookmarking site, to help me do that.  Because I thought that the people who subscribe to and read this blog might be interested in what I’m bookmarking, I used the Link Splicer feature in FeedBurner to include my bookmarks in my FeedBurner feed for this blog.  Which worked fine, except….

I had failed to take into account how this would impact my feed’s presence on the Autism Hub‘s own feed.  Apparently,  because the Hub feed is set up as an aggregator and not RSS a simple link to the site I bookmarked – instead of a link that showed the bookmark link along with my comments – is what Hub subscribers saw.  (I must admit, I never click the links for my own posts in the Hub feed ;-)  So, I’ve disabled the Link Splicer feature to alleviate this problem.

If you are interested in my delicious autism feed, there are three ways you can see it:

1. I have added my delicious autism feed as a widget on the blog site, so you can see it there.
2. You can visit my delicious autism tag page.
3. You can subscribe to the my delicious autism RSS feed, and get it in your feed reader of choice.

You may also be interested in the complete set of autism tagged bookmarks, too.

Three and a half years and nearly 250 posts.  That’s the life so far of 29 Marbles. And to tell the truth, I’ve run out of new things to write about.  Not that there isn’t always something happening in the world related to autism, but like everything else it all seems to happen in cycles.  Different day/month/year, the same stories and questions in different clothing.   

Nowhere is this more evident than in the referral logs for the site.  Most hits come either from the Autism Hub, or from search results.  Sometimes the search queries are on things I wrote about years ago, sometimes more recent.  But inevitably, the same questions keep coming back around.

I first started writing this blog to help me sort through my own feelings and thoughts on autism.  That goal is accomplished; I have a much better conscious understanding now than I did three and a half years ago. But there are many others out there still forming the questions in their minds and looking for answers.   Among those nearly 250 posts are what I feel are good responses to some of those questions.  

I’m sure I’ll continue to write the occasional ”new” post, but for now I’m going to dig into the archives and bring out those that answer the questions I see in my referral logs.   Who knows, I might even have something new to add to those things I haven’t given much thought to in a while.

Frequent readers of this blog know that in my attempt to understand autism better, I have a tendency to see connections in things that aren’t always directly related to autism.  A lot of times this will come in the form of a song, a TV show, or a main- or sub-theme in a movie (like the X-Men trilogy).

My post yesterday brought to mind Bruce Hornsby‘s (excellent) song, The Way It Is (from the album of the same name).

They say, “Hey little boy you can’t go
Where the others go
‘Cause you don’t look like they do”
Said, “Hey old man
How can you stand to think that way
Did you really think about it
Before you made the rules”
He said, son

That’s just the way it is
Some things will never change
That’s just the way it is
Ah, but don’t you believe them

“Don’t you believe them.”  Don’t listen when someone tells you that you can’t change things, that this is how it was meant to be.  Nothing is “meant to be”, that is the wonder of being human, that we determine what is for ourselves.

Well they passed a law in ’64
To give those who ain’t got a little more
But it only goes so far
Because the law don’t change in another’s mind
When all it sees AT the hiring time
Is the line on the color bar

That’s just the way it is
Some things will never change
That’s just the way it is
That’s just the way it is, it is, it is, it is

Note that in the chorus after the last verse, Hornsby never says “don’t you believe them”.  I don’t know if this was intentional or not, but it is definitely true.  You can make a law, you can tell people what they have to do, but you can’t tell them how to think about others.  That takes education, persistence, and persuasion.

And that, I believe, is the challenge we all face in gaining more understanding and acceptance for autistics, indeed for all people who are different.

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.

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.