29 Marbles

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.

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.

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.

What would you think if your friend/neighbor/sibling told you that they had left their 9 year old son at a department store in mid-town Manhattan, by himself, because “he had been begging for me to please leave him somewhere, anywhere, and let him try to figure out how to get home on his own”? Would you call Child Protective Services, or would you say “good for you”? Would you ever do something like that?

After you’ve had a chance to think about it for a second, check out the essay Why I Let My 9-Year-Old Ride the Subway Alone by Lenore Skenazy (also available on her new blog, Free Range Kids).

Was I worried? Yes, a tinge. But it didn’t strike me as that daring, either. Isn’t New York as safe now as it was in 1963? It’s not like we’re living in downtown Baghdad.

Anyway, for weeks my boy had been begging for me to please leave him somewhere, anywhere, and let him try to figure out how to get home on his own. So on that sunny Sunday I gave him a subway map, a MetroCard, a $20 bill, and several quarters, just in case he had to make a call.

No, I did not give him a cell phone. Didn’t want to lose it. And no, I didn’t trail him, like a mommy private eye. I trusted him to figure out that he should take the Lexington Avenue subway down, and the 34th Street crosstown bus home. If he couldn’t do that, I trusted him to ask a stranger. And then I even trusted that stranger not to think, “Gee, I was about to catch my train home, but now I think I’ll abduct this adorable child instead.”

Long story short: My son got home, ecstatic with independence.

Long story longer, and analyzed, to boot: Half the people I’ve told this episode to now want to turn me in for child abuse. As if keeping kids under lock and key and helmet and cell phone and nanny and surveillance is the right way to rear kids. It’s not. It’s debilitating — for us and for them.

It’s that last sentence in the excerpt above that really caught my eye. It is no less true for our autistic kids than it is for our non-autistic kids. There are obviously some differences that need to be allowed for, but only by being given independence – true independence – can kids learn how to be independent, and parents learn how to accept that independence.

Sure there are risks, and there will be mistakes and issues along the way. But isn’t that what life is all about?

As you can imagine, there was a huge negative reaction. But she also received some support from her readers. Check out her follow up, America’s Worst Mom, for the details. Security expert Bruce Schneier also weighs-in on his blog, that is worth a read as well.

Consider this opening paragraph from the book Strengths Finder 2.0:

At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don’t have natural talent with numbers, you’re still forced to spend time in that area to attain a degree. If you’re not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.

Any autism parent – any parent, for that matter – will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not. But that doesn’t mean that is what we should be doing.

The following originally appeared here in February 2006.

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Indulge your (kid’s) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys ‘eat, sleep and breathe’ football and people seem to think that if someone doesn’t, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn’t shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.
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This is a slightly modified version of a post I made to my blog No Straight Lines.

I use SiteMeter on this and other sites to track visits (look in the bottom of the right column if you’ve missed it). It is interesting to see how many people visit the site, and where they come from (all over the world), but what fascinates me the most is the referrer log. I get the odd link from someone else’s blog or other site, but the vast majority of referrals to this blog come from search engine queries.

It is interesting to see what search terms people use that find my sites. Even more interesting are the other sites that those search terms turn up. For instance, a search for “video games and autism and gee” returned a link to my blog No Straight Lines, but also a link to Gaming and Students with Asperger’s Syndrome: A Literature Review:

As a teacher in the field of middle years education, I have observed a continual rising interest in video and online gaming by many of my students, regardless of gender and academic ability. In the past few years, I encountered students playing an online game set in a virtual environment (VE) called Runescape. My interest was especially piqued when I noticed students with special needs, especially those with Asperger’s Syndrome(AS) playing the game and exhibiting positive social and cognitive skills that he would rarely demonstrate in a traditional classroom environment. Students with AS were discussing the game with other classmates (and myself) in and outside the classroom. They were asking how to spell words and utilize a calculator in order to achieve objectives within the game. They were problem solving and surfing the web for online discussion groups associated with the game.

In this literature review, I will seek to answer the following questions: What educational learning principles and concepts are associated with online gaming? How do these aspects of gaming benefit students with AS? In turn, I will present a review of the latest research on the issues related to education and gaming, present an overall framework of the game Runescape, discuss some of the defining characteristics of AS, then explore how certain aspects of gaming benefit students with AS.

— Gaming and Students with Asperger’s Syndrome: A Literature Review

A nice pulling together of several of my areas of interest. The Lit Review itself is well worth a read, and the bibliography provides even more.

The spark that caught CNN’s eye about Amanda Baggs (see my last post if you don’t know what I’m talking about) was her video “In My Language” posted on YouTube. While it is easy enough to just go to YouTube to watch it, I would like to share it here as well.

tagged as: Autism, Amanda Baggs, Anderson Cooper, Sanjay Gupta, Intelligence, Neurodiversity, Autism Advocacy