A life less ordinary?

And now, I draw the line on this blog

2011-11-15T13:30:00.001-06:00

In its 4.5-year existence, this blog has featured 658 posts. A couple of dozen still sit there, as drafts, ideas started but not completed, probably some rants begun and then fizzled away. A grand total of 280 of those posts have been about parenting, but 310...almost half...have been about autism. Ever since our oldest boy received his diagnosis at age 3, a diagnosis I had long anticipated, our parenting has, indeed, been knowingly about autism. Before that, it was also about autism, but we didn't know it yet.

The bytes and bits here have chronicled our lives--the ups and downs, the roller coasters--the fears and worries, decisions and realizations big and small. Through it all, we've had help. Support from insightful and caring autistics who have stepped in every time I've asked to let my son know that it gets better. Support from parents with whom I may not always have agreed but whose thoughtful insights have sometimes been revelations.

Writing here has involved catharsis, enlightenment, missteps, and moments of epiphany. It has been one of my deepest pleasures and greatest needs. But my son is now 10 and a half. I've noted recently that I cannot in good conscience continue to write about him while maintaining my sense of what I owe him as an individual and to respect his personhood. My other sons are also getting older, and I am becoming acutely aware of the need to maintain their privacy, as well. I will continue to blog, but not specifically about them or about our lives, and not here. While our lives less ordinary continue, this blog has run its course.

One thing I've always noticed about blogging is that it's not my posts about our personal lives, about our upheavals, that attract people and pile up the comments. It's always the controversies, the things that anger people, the posts that cross some line that divides...those are the ones that get people to read. Frankly, while I write posts like that compulsively when I come across something that raises my ire, I've always found it off-putting that people generally don't seem to care nearly as much about, you know, life and all that as they do about fighting with each other. It's not news to me, but it has left me somewhat cynical.

In my penultimate post, I sketched out the core of what I've learned so far in my years in the autism community, most particularly what autistic people have taught me about listening, about individuality, about voices. All change takes time. As we continue to work for that change, fight for that change--and yes, it takes conflict to make it happen--we probably will all, whether we're writing about it or not, continue our fascination with autism as we remain, turning and turning, in its ever-widening gyre.

In the autism community, we're fond of drawing lines

2011-11-15T00:05:00.001-06:00

In the autism community, you are required to draw lines. There's no way to ride a fence, park it in the middle of the road. Even if you try--and why would you?--people will beckon to you from either side, try to convince you, or at least get pissed off at you. There isn't a potential line in existence that someone in the autism community hasn't drawn, almost to the refinement of pointillism. The upshot of these lines is that people who can't trace their origins, who have no real investment in doing so, can't quite get a grasp of what autism might be. Obviously, this state of affairs isn't useful to autistic people, especially those who advocate for a better world for themselves and autistic people who come after them.

Where do we draw the lines? Wherever we can find the slightest reason to do so.

Parents draw lines when they think their voices don't matter.
Autism parents draw lines between themselves and other parents based on parental philosophies more than even garden-variety parents in San Francisco. And that's saying something.
Autistics draw lines because their lives have been one slammed door, one sneer, one derisive laugh, one bullying incident, one misinterpreted communication after another.
There are lines around and through different diagnoses, enough to slice a community to ribbons if the divisions are drawn sharp enough.
There's the disability pissing contest--mine's worse than yours. We suffer more. Your suffering cannot compare. My suffering kicks your suffering's ass.
You think that doesn't cause autism? You are completely irrational and a minion of Big Pharma.
Are you a positive person with a positive outlook? Get to that side please. This side of the aisle is reserved only for people who are negative--because negativity, you see, is the only honest interpretation of autism and disability.
You can talk? You're consigned to "not as important." Only parents of nonverbal children on this side of the line.
Wait, did you say something? You're not autistic. Sorry. People who can speak aren't really autistic. You can't speak for my nonverbal child.
Oh, you can type? Articulate yourself well? Sorry, you don't count. You're clearly fully functioning and have no voice for people who are truly autistic.
Your child's diet is not GFCF? Obviously, you've failed as a parent. Please join the other failures over there.
You vaccinate? Dumbass.
Did you just say that it's hard for you? Oh, quit whining.
You have Asperger's? Why are you even in this tent? People like you? You're not autistic. You're just "quirky," possibly even "cutesie." Also, when you reach adulthood, you don't exist.
Speaking of non-existent, I'm sorry, but you can't be a middle-aged autistic person because, well, autistic people didn't exist when you were born.
Did you write something positive about your autistic child? Clearly, you are lying and/or willfully delusional. Please, take your place elsewhere. You don't belong with the rest of us.
You're grieving the loss of hopes you had? Sorry, but that's not allowed.
You have a job, a significant other, an education? You can't be autistic. Autistic people can't do these things.
Oh, you can feel for other people? You can't possibly have autism.
You say you have a disability, but you're happy? Then clearly, you are not disabled.
I'm sorry, I didn't quite hear that. What? You find positives in your autism? That's simply impossible. There is nothing about autism that is positive.
Did you just make a joke? You must have been joking when you said you were autistic. Autistic people don't have a sense of humor.
Oh, you had a bad day because of autism, yours or your child's? Nope. Only the good stuff here.
Oh, I'm sorry...those autistic people can't talk to you because they have nothing to say that might someday open a door for your autistic child.
You don't worry that autistic people might read what you say and perhaps find it offensive? Oh...you say it's because truly autistic people can't read, much less feel offense?
That woman over there thinks that behavior is communication. She's obviously deluded and doesn't realize that her child is simply toxic and that's the autism talking, not the person.
If you don't think autism stole your child, you are living in a land of rainbows and unicorns. Slap, slap. Wake up. You're an idiot.
Your child is mainstreamed? Not autism.
If your experience with autism isn't my experience with autism, then you're not on my side.
If your experience with autism isn't my experience with autism, you cannot have my trust, and I will judge you.

In other words, in the autism community, if you haven't drawn a line, positioned yourself on one side or the other of a million tiny divisions, staked your claim and marked your territory, well...clearly, you're not paying attention.

Do I have lines? Yes, I do. Here are my lines:

Respect autistic people and listen to what they have to say. Period.
Make no assumptions about capacity, but always assume potential.
Do not second-guess the personal experiences of others.
Do not second-guess someone's diagnosis or self identification of autism.
Do not write things about my family members--including my children--that compromise their privacy or personhood.
Do not expect anyone else to feel as I do about their experiences or mine.
Remember that everyone is fighting a personal battle.
Remember that disability does not mean "no ability" and that different does not mean "less."

Those are my lines. If I find that someone has willfully or accidentally crossed them, I will have something to say about it. I always have.

"Autism and Asperger aren't even in the same universe." I beg to differ

2011-11-14T14:42:00.001-06:00

This day, it has been a day. My two sons, one of whom is diagnosed with Asperger Syndrome (AS) and the other of whom has ADHD so disabling that he can’t be in a regular classroom (meds are contraindicated because of his tics and OCD), were very, very off today. Homeschooling was disastrous. There was much flapping, odd body posturing, echolaling, patterned grimacing, vocalizing, and a complete inability to focus. It was an intensely frustrating morning with two non-neurotypical children who were utterly dysregulated, possibly because of related GI issues. That left me with some dysregulation as well, something that was not helped by coming across this blog post from someone who is a parent of three children, one with autism and two, he says, with AS.

The post contradicts itself from beginning to end. But that’s not what made it one of the most angering posts I’ve seen in the autism blogosphere in a long, long time. Nope. What the writer did in this post was take his personal example with his children and (a) claim that unnamed people are harassing him to be more positive about autism, (b) that autism and AS are “not even in the same universe," and (c) that autism is so very, very much more horrible than AS, based on his experience with his children, that it’s simply unacceptable for anyone to behave as though they were similar or as though autism could have any positive aspects to it.

The writer trots out ideas and concepts that I thought were seeing the final dying of the light. Ideas such as a diagnostic and binary separation between AS and autism. Ideas that the autistic people who speak out on behalf of autism as something besides a wholesale tragedy are all AS or “high functioning.” These chestnuts from the autism files nevertheless emerged in this post as Golden Truths.

I’d ignore the entire thing if it weren’t for the fact that it’s been “liked” and retweeted many, many times. The fact that it exists, the fact that people still seem to buy into these erroneous and unsupported assertions—especially that all autism parents with positive attitudes are parents of “high-functioning” children and that all autistic people who advocate are “high functioning”—the fact that people are still buying into this makes me ill. It’s offensive and demoralizing to me, so I can only imagine how autism parents whose children have intense autism or autistic people who are intensely autistic must feel when they read this kind of thing.

I have taken the post piece by piece below, in italics, and added commentary.

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I want to preface this post with a few things. I’m not attempting to force anyone to see things my way. I realize, that we will never all be on the same page. However, what I hope to do is point out a problem within the Autism community that contributes to the rift that has occurred between parents of kids in different places on the spectrum. I think that we need to be able to show a basic level of respect for each other. Everyone’s experience with Autism is different. It’s important to realize that one person’s experience with Autism does not mirror another person’s by default.

First of all, this perpetuates the presumption that the “rift” is between parents of children who are at different places along the spectrum. I’m running down the list of autism parents I know well and with whom I share a similar attitude, and they are split about evenly between having children who have intense autism and having children who are currently diagnosed with PDD-NOS or AS. I’ve seen this hoary old chestnut dug up again and again, yet reality defies its assertions. Attitudes about autism, from my experience, have little to do with the autism itself and everything to do with the owner of the attitude.

I have noticed a lot of criticism lately aimed at parent’s that tend to not see the positive side of Autism. I really am dumbfounded by the lack of compassion individuals in the Autism community can have for one another. I realize that my blog is sorta unique in the sense that I don’t try to paint a positive image where there isn’t one and I’m not afraid to address the reality of how Autism has affected my family.

I’d like to see the links to this criticism. Where is it? And I can’t see how this blog is unique in presenting the reality of autism. I read many, many blogs and Tumblrs whose writers—both autistic and parents of autistic people—articulate quite clearly the realities of autism. I address the realities on my own blog, in fact. There are no unicorns and rainbows there or here. If I choose not to present a negative experience (or a positive one, for that matter) here, it's not from intellectual or willful dishonesty or fear but because I always strive to honor my children's right to personhood and individuality and work to avoid public writing about things that might be humiliating or shaming to them, whether they would be aware or not.

Many of the Autism related blogs out there are really upbeat and positive…and that’s cool, if that’s their experience. I just wonder why people are so afraid to be more honest about their experience, especially when that experience is more negative? I say this all the time but I’ll say it again. It’s so vitally important that we share our stories, both good and bad. The only way people (including those within the Autism community) are going to ever recognize and acknowledge that there is a difference between raising a child with Aspergers and raising a child with lower functioning Autism, is if they know it’s there.

This is a presumption that people are being dishonest in how they describe their lives and an implication that “being upbeat and positive” is somehow the equivalent of living a lie. That they're "afraid" to be honest. Those implications are absolutely not cool--you are taking it upon yourself to accuse people of intellectual dishonesty. Some people are naturally upbeat and positive, and some people are naturally negative and suffer from martyr complexes. If you don’t like reading writing from people who are generally happy about their lives or who take a positively realistic attitude about them, then don’t.

If we don’t speak up, no one will ever hear our voice and the world will go on seeing only one part of what Autism is.

Who is “we” here?

I think it’s important for people to be as transparent as possible when it comes to something as misunderstood as Autism. I say misunderstood because the general public, heck, the special needs parents within the Autism community itself, seem to lack the understanding of just how profoundly dynamic Autism can and will be.

I again would like to see some evidence of this lack of understanding within the special needs community, specifically the autism community, at least besides this egregiously misinformed post. I’ve never come across it.

I know I sound like a scratched record, but Autism and Aspergers aren’t even in the same universe and I can comfortable say this having children in both places on the spectrum. What happens all to often, is that Aspergers becomes the public face of the Autism spectrum and it’s only voice. This is a huge problem, especially for families like mine. As a parent to 2 boys with Aspergers and 1 with Autism, I feel very comfortable saying that.

Autism and AS are “not even in the same universe,” and your evidence for this claim is within your own family? That’s not evidence. That’s not a “HUGE” problem. It’s your problem. You’re presuming that the autistic voices you hear are all from people with AS. I’d like to see your evidence of that. From my personal experience, many autistic voices I hear and read are from people who would be considered intensely autistic. Also from my experience, my son has a diagnosis of AS. The reason? He used words “on time.” Without that criterion, he would have an autism diagnosis. The line is that fine. By the way, those words he used? They were echolalia, but in 2002, we didn’t know that.

I hear, so often from people with an Aspergers child, “why are you so negative”, “Autism is a blessing”, “my child is mainstreamed and doing great” or “you just need to be more positive.”... I swear to God, if I hear that one more time my head will explode. This is exactly why Autism and Aspergers should be considered different disorders. I know I won’t make a lot of new friends by saying that but I really don’t care.

Where are you hearing this? Links? Who are these AS parents who are telling you this? They shouldn't step into your life and tell you how to live it any more than you should lecture people about how honest they are about their personal experiences.

While Autism and Aspergers share some of the same traits, raising a child with Autism and raising a child with Aspergers isn’t even in the same league. Now, before you flood me with hate mail, remember, I have a child with Autism as well as 2 boys with Aspergers, so I understand the difference.

I’m not sure you do understand the diagnostic difference, which in our own case happens to be a very murky one, and the current evidence suggests that there may not be one. Again, you use your family n of 1 and your individual n of 3 to support what you’re saying. Do you have any actual links or data?

Now, PLEASE hear me when I say this, I’m NOT saying that raising a child with Aspergers is easy, because it isn’t. I’m completely aware of this fact.

While raising a child with Aspergers is not easy, it is however, very different than raising a child with Autism. Raising a child with Autism is very often infinitely more challenging. I understand why Aspergers was added to the Autism spectrum. I also understand why it’s going to be removed in the next edition of the DSM.

Raising a child is not easy. Period. My child with ADHD, tics, and OCD has considerable disability and struggles that are an extraordinary challenge for us all, but he’s not autistic. Raising him is very different from raising my sole apparently neurotypical child, but my neurotypical child is also a huge challenge, often in some very neurotypical ways.

Honestly, I don’t personally care, one way or the other as I have much bigger things to worry about.

Clearly, this is untrue, as you’ve devoted this entire blog post to it.

However, and this is a big however, that doesn’t mean I don’t recognize this as a problem. I see and hear almost everyday what the general public and the Autism community itself, thinks Autism is. I find it disturbing that people within the Autism community don’t realize there is more to Autism than Aspergers.

On what do you base this assumed lack of information on the part of the “autism community”? I’ve been deeply involved in this community for about 7 years and have not observed what you describe here. This blanket assertion is baffling to me.

I’m going to say something, with no intentions of offending anyone and with the up most respect. If you think that raising a child with Aspergers is the same as raising a child with Autism, you have no idea what you’re talking about. It’s so unfair to judge a parent struggling with Autism, for not being more positive. The reason they aren’t all sunshine and roses is because many times, there is no positive side to Autism.

You are being offensive. Period. And again, who is it who is hassling you about being more “positive”? And there are a lot of intensely autistic people out there who would take tremendous issue with your assertion that “there is no positive side to autism.” I can only imagine that to them, your words are cruel and incredibly offensive.

Why is this so difficult for people to understand. It’s very clear that many special needs parents out there don’t acknowledge the difference between raising a child with Aspergers and raising a child with Autism, let alone recognize the fact that there is difference in the first place..

It’s unclear still what people are supposed to understand or what you think people find difficult. Your entire post has been devoted to complaining about how different AS and autism are and how people just don’t understand and how negative autism is, but you’ve not provided on iota of evidence or even an example to support what you say. Who are these people who don’t “acknowledge” the differences between raising a child with AS and a child with autism, as you distinguish them in your lexicon? Where are they? I've always acknowledged that raising any of my children will be our own unique experience and not like that of anyone else.

Autism is by definition, a spectrum disorder. Meaning that Autism is a condition that is not limited to a specific set of symptoms but can and will, vary infinitely within the continuum. This is why Autism for you is NOT Autism for me.

Here, you simply debunk yourself. You say above that AS and autism are not even in the same universe, but they both happen to be spectrum disorders, which you define here as varying “infinitely within a continuum.” How can you assume that your experience applies to all considerations of AS versus autism while then stating the above? Autism for you, I must observe, is not autism for me, either.

I also don’t know anyone who’s ever seriously asserted that their experience with autism is the archetypal experience to which everyone else should refer. Why would they? Hasn’t the trope, “If you’ve met one person with autism, you’ve met one person with autism” been repeated enough yet?

Look, comparing an Aspergers child to a child with Autism really won’t get us anywhere.

But you just did that.

I do however, think that it’s vitally important to understand that there is a difference and a profound one, at that.

You haven’t explained that at all, provided any sources or examples to support what you’re saying. Nothing in this post demonstrates this point in any way.

We need to remember and even acknowledge these differences and not crucify those that are struggling with something you simply don’t understand. Doing so would a step towards becoming a well informed, special needs parent, and a better, fully unified Autism community.

I’m still in need here of some evidence. Who is crucifying whom? You call here for a "better, fully unified" autism community, but your entire post is about drawing a line in the sand in that community and assigning people to different sides of that line based either on their attitudes or an AS vs autism diagnosis. That is not exemplary of a "well-informed special needs parent," and it does nothing whatsoever to forming a "better, fully unified autism community." It's simply divisive.

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Follow-up: The person who wrote the above-referenced post has responded to my comments on his blog in a post saying that my comments are so ridiculous, he won't bother to respond. In spite of vowing not to respond, he does take the time to call me "intolerant." I'll let that one soak in its own irony juices. I have responded to his "non-response" as follows:

Thanks for asking permission to strip my entire post and post it here (that would be irony). At least I quoted you in my post and stated as much.

My problem with your post--as I stated in my blog post, tweeted *to* you, and made you aware of by *posting the link in a comment on your own post*-- is as follows: You take it upon yourself to determine that others should be experiencing and responding to autism the way you do. I am not taking issue with your opinions or experiences; I am taking issue with your assumptions about other people. You presume that they are "afraid" and not being honest with themselves. You imply that only people who are AS represent autism to the world. You say you don't want to offend, but when I express offense and state that others might find what you write offensive, particularly autistic people...you're offended.

I've responded to each of these statements--with your verbatim words, not "out of context"--in my post. You say that this is your experience--although you provide no details, so I can't tell what your experience is--yet you graft it onto the autism community as a "divide." You call me "intolerant" because I don't think you have a right to dictate to people how they respond to their experiences or to imply incorrectly that autistic voices are all AS voices or to imply that people who don't present autism as an endless misery are dishonest and afraid. Nowhere in my post do I demand that you feel a certain way, react a certain way, be a certain way. I don't accuse you of intellectual or emotional dishonesty.

You don't bother to respond directly to my well-considered comments because they "are ridiculous," yet you call *me* intolerant. You state that there is nothing positive about autism, even as autistic people speak out for themselves and note what is positive about themselves, yet you call me "intolerant." You don't even allow that autistic people have a voice, yet you call me intolerant. You want proof that your post was divisive? Look at the divide. It's right in front of you in your previous post, positives vs negatives, autism vs AS, and it's something *your* post engendered.
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ETA more: The author of the original post has now added responses to his "non-response" post, highlighted in yellow. They primarily consist of "Because people tell me that" and "because a lot of people think I'm right, so I am," which was his response to me on Twitter, as well. Meanwhile, without mentioning his newfound ability to respond, he has posted a comment here appearing to call some sort of a truce and asking why I didn't respond to his original public and opinionated post--in which he actually acknowledges that he's being inflammatory--by email. I'm somewhat at a loss to understand why someone who publicly posted something he himself felt was controversial is so surprised to find its being criticized.

For anyone interested in more perspective on why talking about disability this way matters, I encourage reading this post from Lynne Soraya.

Two posts about anti-vax conspiracies

2011-11-10T20:56:00.001-06:00

At the Biology Files, I've written two posts about the interwoven network of anti-vaxx, anti-science, anti-autism entities out there whose echo chamber is so cozy, they seem to think the rest of us can't see it.

On tells us much of what we already know--except had you heard about Mercola's ties to Big Chem?

The other is on a more serious note, tracing the links among the people who are still trying to defend Andrew Wakefield in every available venue while apparently trying to pretend they don't know each other--and don't make these plans among themselves for their transparent campaign.

Thinking Person's Guide to Autism: A Chat with the Editors

2011-11-02T12:12:00.000-05:00

Here we all are. Shannon des Roches Rosa and Jennifer Byde-Myers, co-founders of Thinking Person's Guide to Autism and co-editors Liz Ditz, Carol Greenburg, and Yours Truly. We are talking about the upcoming Thinking Person's Guide to Autism book, and we have a lot to say.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

Autistic people and NTs: Who has trouble reading whom?

2011-10-30T17:59:00.000-05:00

I've read quite a bit lately about autism, empathy, and theory of the mind. In the most seemingly unrelated contexts, I come across allusions to how autistic people lack empathy. So I think it's time I asked a question that's been on my mind.

Based on responses to this post and personal experience, I think that autistic people can read nonverbal cues, which are not only about facial expressions, but include tone, gestures, body language, and throwing things. It may be that even as autistic people register these communications, they may understand them without specifically reacting to them. But how often have you found that non-autistic people have significant trouble reading an autistic person's nonverbal communication even though once the context is clear, the message becomes obvious?

Communications is a two-way street. Who misconstrues more in, say, an interaction between an "NT" person and an autistic person--the autistic or the NT?

Just askin'. What's your experience?

Autism and adolescence: painful synergy

2011-10-24T14:40:00.006-05:00

Yesterday and today, I had a conversation on Twitter related to this post about using the word "autistic" as an adjective or a noun.

An autistic adult noted, "I'm an adult autistic and don't think I have said that it's not a disability now that I've got more perspective on coping."

I commented back that, "I think it's possible to have a disability that has positive aspects. I know autistics who consider it disabling."

And another autistic commented that, "I love my #autism. And I acknowledge that it is #disabling. Esp. sensory issues and linguistic processing."

This conversation turned out to be one of intense interest to me even more than would be apparent thanks to this sudden non-sequitur (to me) from TH this morning as we were doing schoolwork:

If I could make it happen, I would make it so that no one ever has autism, ever again.

This is from the same child who, only a few weeks ago, sent the following to an autistic boy to show his support:

We talk about it all the time, my parents love and accept me the way I am. But there are others that are like us. Hundreds. Thousands. Maybe even millions! But we must learn to love and accept ourselves! It doesn't matter if were different, it doesn't matter what people call us! And it doesn't even matter when they insult us! Being different is hard at times, but being different is a gift, too! It makes you unique in a good way! So take this advice, Noah! From now on don't feel ashamed or useless! Whenever anyone insults you or treats you badly say: I'm proud of who I am! Or I'm not perfect but nobody is, and I'm a good person! Now, you know that it doesn't matter if your different, but it matters how you treat yourself and how others treat you!

Based on his statement this morning, my son is clearly grappling with his own reality--something he cannot change--while still not wishing his reality on others. I'm sure my face--well, maybe I'm not sure--registered the shock I felt from his observation. I asked him to elaborate, and he did.

I can tell that much of what he was saying arose from his cogitations after watching the Lesley Stahl 60 Minutes segment on autism last night. While the narration of the segment and commentary from Stahl left something to be desired, TH clearly felt a connection to the children in the story. And when Temple Grandin had her brain imaged, he was exclamatory, wondering what was different, how it was different from what they kept calling "normal" in the segment. (As an aside, when did Grandin become someone who has "Asperger's"? I though she had a language delay? I don't buy into the diagnostic divisions, but the current distinction is primarily the language one.)

He expressed to me how hopeless he feels about ever making friends. He doesn't want people to have the same struggles with social interactions that he has. He doesn't want people to find it hard to talk (not a problem for him) or not be able to talk at all. He's anxious and a little sad that he has "only" ever made two friends, and I think he's concerned that even those two may be slipping away thanks to the twin gulfs of distance and time.

Sigh. I know that feeling alienated and isolated comes with the territory not of being autistic, per se, but of being pre-pubescent, peri-pubescent, damned near pubescent. He's expressed other anxieties that he doesn't relate to autism, talked to me about just not feeling quite right in his head, feeling strange and a stranger in his own mind. That sounds alarming in black and white, but I think what he really means is that he feels confused. Who wouldn't feel confused as middle school approached, as puberty's shadow grew on the horizon, complete with all sorts of (to him) horror stories (not from us) about the foibles and confusions of adolescence?

But he's also grappling with being different. He knows he's different. One of the first lucid questions he ever asked me was when he was in kindergarten, again a seeming non-sequitur: "Why am I so different from everyone else?" It was heartbreaking at the time because he was collected enough at that moment to ask a question, and it was the first one to come to his mind. But the answer, "Because your brain is made differently. That's not a bad thing, but it is different," was one that no child--but especially our child--was going to encompass without considerable repetition and explanation. Yet only a few weeks ago, he was proud enough of his difference to write the way he did, to support someone else with a similar difference.

A couple of weeks ago, Dubya observed that "The big difference between turning into an adolescent and turning into a butterfly is that with the butterfly, no one can see you." TH's dual specters of being different (autistic) at a time (adolescence) when many people simply don't want anyone to notice them are a potent combination acting on a plastic, impressionable, sensitive mind. One that's so sensitive, he wouldn't wish this combination on anyone else.

So, we talked. We always talk, although for once, we weren't having an Important Conversation in the car. We talked about friends, how many you need, how brothers and family can be friends, too. How college, with the way it (in theory) raises appreciation for knowledge and reduces emphasis on the finer points of social interaction, will be a place where he'll find friends, find his own. That autism isn't going to prevent that for him. We all have our people, somewhere out there. It just takes the right environment for the good to outweigh any negatives. We even talked about how autism may well underlie some of the way that people advance in culture and technology, how autistic people, in spite of the pain that some sectors of society may inflict on them, are important to humanity, too.

He understands that his autism has benefits, and he understands that there are negatives for him, too. Today, I think hormones and 60 Minutes and maybe a bit of loneliness on a beautiful fall morning led to his expression of a wish that whatever his reality is, he wouldn't wish it on anyone else. Strangely enough, his vocabulary word today was "catharsis." Thinking that perhaps scribbling out his worries in his journal might indeed be a catharsis for him, I had him write a second entry for the day. And all he wrote (given here with permission) was, "I wonder if I will be different in college." That's it. That was the entry.

No one said adolescence would be easy. It almost never is with that much change, the epic reconstruction and rebuilding of a child into an adult. I know mine was a mess for me, from the inside out. But it's looking like autism and adolescence may be a synergistically painful combination for our boy. Insights and experiences from autistics in the middle or on the other side of that metamorphosis are welcome.

Why "Autistics" isn't a bad word

2011-10-21T13:08:00.009-05:00

In response to this post from yesterday, Nikki B asked me via Twitter, "Why is using 'retarded' different from using 'autistic', which also has baggage?"

Nikki is someone with whom I've been discussing the use of "autistic" on Twitter, a conversation that I Storified here. She has also contributed a comment to yesterday's post.

As I noted in a comment response on that post, the difference is that autistics have themselves expressed a preference for this term and use it. When a minority community takes ownership of the term (this isn't the first time that's happened; see "queer" or the N-word, which I still can't bring myself to type), the non-minority community doesn't get to determine that it's not OK for them to use it. I'm not aware, however, of anyone's in the disability community having co-opted terms like "retarded" as their own.

Most autistics I know have expressed that their autism is who they are and that therefore, they refer to themselves as autistics, regardless of the perceived baggage it may carry on the part of people who are not autistic. It's the other people, not the autistics, who bring that baggage. The autistics who describe themselves in this way are using the term as a mark of pride. Autistic people get to make this decision because they are The First Persons.

Nikki has her own take on this issue and has blogged it here. In that post, she says, "I am not autistic, and so some may argue I don't have a voice here. I certainly applaud those people who are autistic and who are fighting to make terms such as 'autistics' acceptable, but because there is litte or no precedent in English for using plural nouns in this way except for medical or negative purposes, it concerns me that the result will be opposite to that intended. That is, its use will serve to re-medicalise autism. And that would be a shame when so many have done so much good work in advocating the strengths and community of autistic people in recent years."

My response to that is that autistics use the term "Autistic" positively for that very purpose. Autism has been medicalized to the point that parents of autistic children find that anything but person-first language is offensive. Autism has been medicalized to the point that autistic people can read and hear words used to describe them that include "tragic," "stolen," "monster," and "afflicted." It has been medicalized to the point that when autistic people themselves choose to use the word "Autistic" as a noun, the response from non-autistics is almost one of sheer horror.

Autistic people don't view themselves as walking tragedies. It's probably impossible to transcend "retarded," a word that intrinsically and incorrectly implies some sort of inability to even understand or be aware of how one would go about doing so and one that describes a single aspect of a person's individuality. "Retarded" isn't an identity; it's a perception based on testing, expectations, misunderstanding of potential, and a focus on a narrow range of attributes that ignores a much larger range of possibilities.

Autistic is different. Autistics transcend and up-end the typical understanding of this word every day, and one way they do so is by purposely linking themselves to its use and using it to represent themselves as individuals. And as Christine Zorn, another commenter on the post from yesterday observed, "I don't think the word "autistic" has anywhere near the amount of baggage that 'retarded' has. I can't think of even one time I've heard a person use the word 'autistic' as an insult, or to put another person down. I'm not saying it doesn't happen, but it can even be compared to the word 'retarded.'"

It is for these reasons that autistic people have taken ownership of autistic, using it as the noun form, sometimes even capitalizing it as "Autistic." The goal is to de-medicalize the word, to place it and themselves in a more positive light, to put themselves forth as individuals, as Autistics, who have strengths and weaknesses like everyone else and a right both for their voices and words to be heard...and to choose those words themselves.

Thanks, Ricky Gervais, for the pitch

2011-10-21T09:35:00.008-05:00

When I was young, I lived a somewhat sheltered life. My parents never used racial or ethnic slurs around me or not around me, and even though I grew up in a small-ish, very southern town, the only slur I ever learned before middle school was the N-word, which I am myself to blame for having learned. At age 5, rapt with the poetry of rhyme, I was working my way through the alphabet, rhyming with the word "Tigger." When I reached N, my parents became rather dramatic and, let us say, instilled in me a permanent repulsion for the word.

I was in Texas, so naturally, I did manage to hear that term again here and there. But it wasn't until high school that I came across other slurs, mostly having to do with Asians and Latinos and primarily thanks to politicians who used them. Then, in my first professional employment, I learned about other terms involving towels and some anti-Semitic terms. Before that, as an unwashed heathen growing up in an agnostic household, I had not encountered this embittered religious hatred by way of stereotypes and epithets.

Speaking of religion, there is a biblical saying that I think about a lot. You can't touch pitch and not be defiled. Before my parents had to explain to me why I should never rhyme Tigger that way again, I was aware of differences in skin color. Aware, but confused. I watched "Sanford and Son" a lot and, thanks to Redd Foxx's coloration, had determined that my father--with his black hair and dark skin and green eyes--was like Redd Foxx. Society and culture and ethnicity, of course, disagree with that, but I was five, so I'll have to be forgiven. The point is, I was completely unaware of the gulf and instead viewed Redd Foxx and my father as related among humanity. My discovery about the N-word changed all that, and I suddenly became hyper aware that people saw distinctions that separated, rather than similarities that joined.

As someone who has always been more than a tad socially clueless, I wandered through my life unaware of other divides, other chasms, until someone else would use an epithet in front of me and then it would hit me all over again. A new divide to understand. A new cultural chasm of which to be aware. Without these words, these pejorative terms, people were just people to me. With an awareness of these terms came an awareness of hatred and division, and now they were in my brain. My ears or my eyes had, figuratively, touched pitch and I had become defiled.

In spite of my advanced age, I still manage to come across epithets that I know are in some way pejorative, but I avoid investigating the meaning because you know what? Enough with the pitch already. Yes, there are divisions that lead to historic and current oppression, but I don't think either side of whatever division it is needs to resort to hate speech to recognize the differences and the need for bridge building.

One divide that persists is that between the disability community and, oh, regular people. The disability community seems to be one of the last remaining socially acceptable targets across generations. I've had students who've used the word "retarded," talking about themselves, but meaning it comparatively to being intellectually disabled. I've seen people of my generation use it on Twitter, in movies, on TV. This word once had a purely clinical connotation--as in "mentally retarded"--but now some people would argue that its use has become so common outside the clinical realm, simply to suggest "slow" in some way, that it's OK to use it.

But using it relies on the foundation on which the word is built. It relies on a stereotype of intellectually disabled people as caricatures of universal slowness and incapacity. Without that stereotype, applying the appellation to someone else would have no meaning. Without that caricature as its foundation, the word "retarded" used self deprecatingly would not be self deprecating at all. In other words, the core foundation of the word "retarded"--referring to the intellectually disabled--is what gives its current use its meaning.

With an awareness that this term comes with baggage that is an offensive stereotype, I do not use it, in spite of anyone's arguments that the meaning has somehow shape-shifted and distanced itself from actually referring to the intellectually disabled. It hasn't. It can't. That stereotype is inherent in the term. To forget that is to forget about the rights of the intellectually disabled as people who deserve recognition as individuals, not stereotypes.

Words like "moron" and "idiot" have the same connotation. I especially dislike "moron," having seen it used more recently than many may realize in the clinical literature. Idiot, while satisfying as hell with all of those hard consonants, persisted even into recent decades as in the term "idiot savant," used to describe autistic people with perceived "savant" skills. I struggle to avoid using this word, it's so prevalent and comes to me so automatically. Once one has been defiled, it can take an effort of will to avoid blurting out these terms now embedded in the psyche. I understand that not using them takes work because I work myself on trying not to use "idiot." But these terms are loaded with meaning, specifically for the community of the intellectually disabled. Is it PC to argue that we shouldn't forget that meaning? I'd say that it's more accurate to call it apologetics when people argue that the former meanings don't matter.

Why this harangue? I have Ricky Gervais to thank for it. Today, I learned a new epithet. It's one I hadn't known before, either because of aforementioned social cluelessness or because I'm not British. Either way, he's used the epithet, one that's been applied previously to people with Down's Syndrome, and he remains unapologetic about it. His argument is that it no longer refers to people with Down's but that instead it's entered into a second act in its etymological life, one that somehow is absent the shadow of the stereotyping from which it arose.

So, once again, I've touched pitch. I've learned a new epithet and something new about human division. I've seen apologetics in action yet again, and feel that now, in two ways, we touch pitch and are defiled when people insist on using these terms and defending their use. One is that the words become a part of our psyche, like it or not. The other is that our fellow humans don't have sufficient humanity to renounce them.

Wondering about the autism and type 2 diabetes "study"?

2011-10-20T15:12:00.002-05:00

The news release, posted at ScienceDaily, starts like this:

A review of the genetic and biochemical abnormalities associated with autism reveals a possible link between the widely diagnosed neurological disorder and Type 2 diabetes, another medical disorder on the rise in recent decades.

I hopehopehope that this particular foray into the world of autism research doesn't catch fire in the news media (although I know it will with the two irresistible hot-button health issues involved). Why? Read more here.

I don't give a damn about my reputation

2011-10-12T15:53:00.004-05:00

With thanks to Joan Jett:

I don't give a damn
'Bout my bad reputation
I've never been afraid of any deviation
An' I don't really care
If ya think I'm strange
I ain't gonna change
An' I'm never gonna care
'Bout my bad reputation

Why, you might ask, am I quoting Joan Jett lyrics? Because of a new study asserting that autistic people don't care about their reputations. While I might buy into that conclusion in a narrow sense based on a narrow interpretation of the study results, having before asserted that I'm fairly indifferent to that sort of thing myself, I take issue (again) with this statement from the study:

It has been well established that ASD features reduced empathy

Gaaaah!

I articulate what I have to say about that assertion over at The Biology Files. Let's just say that I'm getting weary of having the definition of empathy filtered through a single set of assessments developed by a single group that developed their own definition of empathy, when apparently, "neurotypical" people kinda suck at such interpretations anyway. I'm not alone in being an Emily with an encroaching nausea attributable to such weariness. While you're visiting blogs, please visit this post over at The Thinking Person's Guide to Autism, in which Rachel Cohen-Rottenberg nails the fundamental flaw in that definition with incredible insight.

Amanda Knox case leads to question, What's in a face? I wouldn't know

2011-10-08T21:25:00.005-05:00

Ian Leslie, writing for The Guardian, tells the story of how Italian police relied on Amanda Knox's facial expressions to decide that she was stone-cold, demon-driven killer. He also hilariously points out the obvious:

The eyes, it is said, are windows to the soul. They are not. They are organs for converting light into electro-magnetic impulses. But this has never stopped us dreaming of them that way.

I've never viewed eyes as being windows to anything. They lie because we aren't reading the other person in them, we're reading ourselves. People think after the fact that Ted Bundy looked like a serial killer, but did they think that before they knew it about him? No. He came across as charming. In the Guardian piece, Leslie quotes Emily Pronin, a psychologist from Princeton, who notes that when we talk to each other, what stands out for each person is their own thoughts and the other person's face. She says that we judge others by what we see in that face while judging ourselves by what we feel.

Most of what we see in faces, it seems, is what we decide we'll see.

Faces are distracting to me. I start thinking too much about whether I am staring too hard, so I look away. Then I think looking away is probably odd, so then I look back, and then I think again that I'm probably staring too hard. Also, teeth and eyes and things on the faces or little things about the hair or ears or eyebrows distract, as well, and I'm always also wondering if the person to whom I'm talking wonders why I'm staring at their scalp instead of at their...what? Eyes? (By the way, have you ever tried looking into two eyes at once? Can't be done).

So, I don't try to read faces. What's to read? A smile that didn't quite make the truth register? I think people are culturally and evolutionarily conditioned to smile all the time when they don't mean it...after all, showing teeth that way is conciliatory, it means, "I'm not gonna get into it with you. I'm nice. Really." Tone of voice can tell me more than a face, especially if it's insincere and exaggerated. I'm from Texas, I've got a lifetime of experience with that one. "How are you?!? It's great to see yoooou!" Mmmhmmm.

Instead, I listen to the voice, the words, and any dissonance inherent in the situation, like just being thrilled beyond all measure to see someone you've met briefly maybe twice before. If situation, words, tone, and level of expression don't rationally interrelate, I'll suspect that I'm in the presence of some serious insincerity, if not outright lying. It's not what's in the face. It's how it all fits together. In this case, rational consideration of all of the elements may well trump some kind of "social intuition" factor that some people think they have.

And that leaves me wondering if people like the investigators described in that piece should move over so those who don't let faces interfere with social interpretation can have a go at it. The socially challenged Spocks of the world, unassailed by specific attention to misleading expressions, might prove to be a little better at these things, ironically. In fact, as I type that, a prominent character who fits that description comes immediately to mind: the world's most famous detective, Sherlock Holmes.

Perhaps you've heard about the autistic mice

2011-10-08T13:13:00.002-05:00

I've blogged it over at The Biology Files. Starts out like this:

A couple of years ago, I made a prediction about the direction autism research would take, and the biggest blinking neon signpost pointed straight at CNVs, or copy number variations. The variations are in how many copies of a specific DNA sequence a person has. Yes, these do vary, sometimes leading to nothing of much note but other times leading to significant outcomes. To quote myself from a post from last April about the state of the science in autism research--in which I listed CNVs first--I said:

A disorder or developmental difference with this etiological complexity may come down to something as individually variable as the number of copies of a gene sequence a person carries. Bob as five repeats in one area of his DNA, Sue has 10, Sue has autism, Bob does not. But when Bob has a child, by that time those repeats have doubled to 10 in his germ line (where his sperm comes from), and he passes 10 to his child. His child has autism. His next child gets a sperm that carries only 5 repeats and does not have autism. The neighbors all have between zero and four repeats, and none of them has autism. In other words, that saying that people use a lot with autism, "When you meet one person with autism, you've met one person with autism"? Could be more precise than we think.

More....

If a researcher has a tie to autism, should that be disclosed in autism-research papers?

2011-10-04T15:53:00.001-05:00

A tale of two papers

A paper has emerged on the scene that reports to have analyzed "biomarkers" in relationship to autistic children versus neurotypical children. In their conclusions, the authors state that they identified "many statistically significant differences" between the two groups in nutritional and metabolic status, "including biomarkers indicative of vitamin insufficiency, increased oxidative stress, reduced capacity for energy transport, sulfation, and detoxification." They also report having associated "several of the biomarker groups with variations in the severity of autism."

Before going on, let me just note that autistic children are known for being extraordinarily sensitive about which foods they will eat. I know one autistic boy, for example, who will eat only chicken nuggets. Really, that's all he will eat. Thus, it would come as no surprise that researchers might identify nutritional imbalances in autistic children, given the tendency of autistic children to self impose dietary restrictions.

But let's take a look at this paper. Actually, let's first take a look at a previous, similar paper from this same group. Prometheus, over at Photon in the Darkness, shed some light on the major issues with that paper, starting with a failure of one of the authors to obtain IRB approval for research with human subjects--children, some failures of statistical analysis (for which the authors may have overcorrected; see below), and a failure of targeting the correct tissues for analysis (e.g., looking at plasma ATP levels, rather than cellular levels). These last issues appear to have gone uncorrected in the current paper from the journal Nutrition and Metabolism, while the statistical issues have gone from what Prometheus describes as "comedy" to the simply befuddled.

First, what do they mean by significant?

The authors describe a number of analyses that seem to become entangled with one another, then they present results in paired tables and figures that don't quite agree with themselves. For reasons that remain unclear, in performing t-tests, they also did a Bonferroni correction for multiple comparisons, and I can't quite figure out why they did that in these cases. It was something Prometheus recommended for true multiple comparisons, so perhaps it's an overcorrection with the Bonferroni correction? If someone could explain that, I'd appreciate it. How they handle the results in their paper does little to enlighten me (see below).

This is from the paper:

We use the term "marginally significant" if the p value is less than 0.1/(number of comparisons). We use the term "possibly significant" if the p-value is less than 0.05 but not low enough to be marginally significant; this means that the result would be significant if only one comparison were made, but could be a statistical fluke due to the making of many comparisons, so further studies are needed to confirm or invalidate the result.

Based on this, if the number of comparisons is only 1, I infer that the authors would consider a P of 0.1 to indicate marginal significance. Also, they've invented a new significance category of "possibly significant." Haven't seen that one before.

At any rate, they themselves seem confused about how to apply it or when to call a result significant. For example, here is their Table 5, purporting to show differences in vitamin levels between autistic and neurotypical children. In that table, they boldface eight results, all of which appear to have P values that are generally accepted to indicate significance unless multiple comparison calculations dictate otherwise. But then, there's the fine print in the footnotes that tells us that only those values marked with an asterisk are truly significant. Only two comparisons have this notation: the one for total choline and the one for biotin. Two.

Here's what the text says about the statistics in the table:

Table 5 shows the participants' levels of vitamins, vitamin-like substances, and biomarkers of vitamin status. Because we are making multiple comparisons (our hypothesis is "are the levels of any vitamins different in children with autism vs. controls"), we need to apply a Bonferroni correction (see statistical analysis section). For 21 comparisons, p values are defined as: "significant" = p < 0.002, "marginally significant" = p < 0.005, and "possibly significant" = p < 0.05. Figure 1 compares the levels of vitamin-related biomarkers that were different in the autism group compared to the control group.

Then, we have the associated figure, Figure 1 (below). In this figure, they've taken the neurotypical values and set them at the 100% mark, then provided the relative change in percent for autistic children by comparison.

This figure is entitled, "Vitamins and related substances which (sic) were significantly different ebtween the autism and neurotypical groups, rescaled to the average neurotypical values." The legend text tells us that the average values and SDs are shown, and that the number of asterisks indicates the p values as follows: * 0.05, ** 0.01, and *** 0.001.

The figure offers eight comparisons, exactly as the table offers eight boldfaced result entries. But, the table told us that only two of these comparisons were really significant, based on the table footnote and the text, while the figure seems to imply that they all are. Which is it, authors? By the way, intrigued by the huge overlap of SD bars, I did analyze the data based on information provided, using GraphPad, and their P values appear to be accurate.

The relationship (or lack of concordance) between the data and conclusions implied in Table 6 related to Figure 2 show a similar pattern. Table 6 gives 11 boldfaced results, but of these, by the authors' own analysis, only one (iron, RBCs) is genuinely significant.

Here's what they say in the text about this table:

Table 6 shows the levels of minerals in whole blood (WB), red blood cell (RBC), serum, and urine (for iodine) for the study participants. (28 comparisons: "significant" is p < 0.002, "marginally significant" is p < 0.004, and "possibly significant" is p < 0.05).

And here's the related figure:

This figure offers up 10 comparisons, and once again, the authors state that these were significantly different between groups, giving the same P value references for *, **, and *** as for Figure 1. The figure reflects only 10 of the boldfaced results from Table 6 because the authors omitted the boldfaced repeat of the lithium analysis that they performed after removing the "three highest neurotypical outliers." They mention outliers only once in the text, and it wasn't for this analysis, so no explanation for the rationale for removing three outliers.

This goes on for table-figure pairings for metabolic stress markers, measurements of ATP et al., and plasma amino acids, with comments in the text such as,

The autism group had a higher level of beta-amino isobutyrate (+39%, p = 0.004, marginally significant). They had a possibly significant lower level of taurine. They also had a possibly significant much higher level of "homocystine + homocysteine"- ...

Conclusions?

The authors state that they identified differences for autistic children in "biomarkers indicative of vitamin insufficiency." But in their table showing the results, not all findings were of a decrease relative to neurotypical children. Among the eight boldfaced results, half indicated increase levels in the autistic children of the vitamins measured. Of the two that were significant based on the text and the table, one was an increase in the autistic group (choline), and one was a decrease (biotin). So actually, the findings for vitamins were not "insufficiency" but mixed.

The same mixed set of findings applies to the minerals; of the 10 boldfaced results, six reflected increases in the autistic group relative to neurotypical children, including the sole finding (iron-RBC) that was significant based on information in the text and table.

They also state that the results suggested increased oxidative stress. Prometheus said it best:

The sad fact is that it has been well documented for over forty years that glutathione “disappears” from the serum due to interaction with serum proteins. That’s why serum (or plasma) glutathione levels are not useful. Additionally, the serum/plasma is an oxidising environment, so any glutathione there will be rapidly oxidised (glutathione is easily oxidised - that’s why it’s such a good anti-oxidant), rendering the oxidised:reduced glutathione ratio meaningless. The interior of the cell is a reducing environment (except for the mitochondria), which makes it possible for reduced glutathione to accumulate.

And so on.

Confounding as H-E-double hockey sticks

It's worth noting that almost half of the children in the autism group were on medications of some kind. As the authors note, "Some of these medications may have affected their levels of vitamins, minerals, or other biomarkers." Helpfully enough, that observation takes me to the next set of analyses, their "correlational analysis." They report but don't visualize for the reader and don't give specific values for most of the claims they make. They do note helpfully for the reader in one table footnote that, "since many correlations were investigated, these results are not highly significant, and are at most possibly significant." That's just painful.

As the parent of an autistic child and as someone who pays a lot of attention to all things autism, I took a look at the data they provided about autism. To determine severity, parents were asked to complete three questionnaires. The children themselves had one of three possible diagnoses not confirmed within the study itself: PDD-NOS, Asperger's Syndrome, or Autism. There were 55 children total in the autism group. Of these, 85% had an autism diagnosis, 4% had PDD-NOS, and 11% had Asperger's. They were on medications, as follows:

55% no medications
29% psycho-pharmaceuticals - primarily risperidone and clonidine;
9% on CNS stimulants (primarily Concerta); 4% on anti-convulsants
5% on GI medications;
7% on asthma/allergy medicine;
2% on insulin

Already, we're in a minefield of possible confounders in this small group of 55 children--multiple diagnoses (taken at face value of a medical report with no further investigation done), multiple medications. It's amazing that they didn't differ from the neurotypical group in every single parameter.

Then there's the thing that really, truly befuddles me, only from personal experience and because of the literature. The symptoms (based on parent report) come to us via this table. The one result that caught my eye was this: only 27% of the children in the autism group were "anxious/fearful" to the extent that the parents ranked it as moderate or severe.

I find that odd because anxiety is a hallmark of autism. Studies have found "impairing anxiety" to be as high as 84% in the autistic population (compared to 14% among non-autistics), with most findings hovering at least around the 50% mark.

Three parameters were present in more than half of the autistic population. Two related to diet and nutrition, with 68% of parents reporting that the child "eats too much/little" (confounding further) and 53% reporting that their child ate a "limited diet." Houston, don't we have a clear candidate etiology right here that has nothing to do with autism per se? The other parameter present in more than half of the children was "hooked or fixated on certain objects."

Finally, this study that involved 55 autistic children seems to have involved dozens and dozens of statistical analyses, parsing the group down to autism severity in a quest for correlation with a large number of parameters. When humans are involved with this diverse a set of confounders (not to mention those not mentioned, such as socioeconomic status, specific dietary information, eating habits or those that perhaps might have been excised via the correct analyses), this level of detail in analysis typically just gets you stuck in statistical quicksand.

What's really significant?

Given the equivocations, the use of "marginal" and "different but not statistically" throughout this paper and the dizzying multiplicity of analyses, it's difficult to say what exactly the real findings are. If the authors had kept their discussion confined only to those values that their text and tables described as genuinely significant, then we'd still have a mixed bag of findings, such as the mixed results for vitamins and minerals. In other words, whether you try to parse the head-spinning hair-split results or only those that emerge as genuinely significant, no clear pattern seems to apply.

But what does the literature say, you may ask

Not much, according to the authors. The authors cite a total of two papers to give their Pollock-esque results some context. One is a study out of China of 14 autistic children that looked only at amino acid levels in this group. They report enormous variability within the group (e.g., glutamine at a mean of 241 micromolar but with what I assume is an SD value of 166 micromolar). Huge variability, 14 children. Hmm.

The other study they offer for context is this one, which compared the effects of "micronutrient" therapy for autistic children who engaged in self-injurious behavior to the effects of conventional medical therapies in terms of ameliorating the behavior. Each group had 44 children, and the authors report greater improvements with micronutrient treatment.

In other words, as noted above, a clear etiology here is dietary limitations, likely arising from self-imposed dietary restrictions. What would have been useful to link any of the findings to autism per se (as the article title claims) would have been taking autistic children with restricted diets and comparing them to autistic children with unrestricted diets (a finding of no differences in endpoints might implicate autism), or better yet, also incorporating two groups of non-autistic children, one with a restricted diet and one without.

I found it strange that the authors had not found other literature addressing exactly this association. So, I went to look for it. Here are some examples:

A paper finding that autistic children ate fewer foods than neurotypical age-matched controls, and that the selective eaters were significantly more likely than typical controls to be at risk for at least one serious nutrient deficiency.
A paper finding differences in urine homocysteine levels of autistic children compared to non-autistic children.
A Chinese study of 111 autistic children that identified nutritional deficiencies that the authors tested because of the association between autism and "picky eating."
A paper that documented three-day food intake of 53 autistic children relative to a control group and found that food selectivity is more common in children with ASDs and that "a limited food repertoire may be associated with nutrient inadequacies."

And that's just from the first page of six of PubMed hits on the search terms "autism" and "nutrition."

So why all the other analyses with the metabolic parameters, the metals, etc.? You know what really set off my woo-dar in reading this paper? It was this statement:

GSH is an important anti-oxidant and important for excretion of toxic metals.

Using the word "toxic" there for metals just didn't seem very scientific to me. It did, however, remind me a whole lot of many woos I've met in Wooville. So, with antennae up, I was on the alert for more red flags. There were some obvious woo-flags, such as the woo-sounding institutional affiliations of some of the authors (Health Diagnostics, Integrative Developmental Pediatrics, Southwest College of Naturopathic Medicine). But the biggest one to watch for? What is the dog in this hunt? The metaphorical dog can be many things, from personal and passionate involvement to monetary gain, but if it's there, we've got rules governing revelation of said dogs. They're called "Conflict of Interest" (COI) statements.

Who are these authors?

This mess of a paper with its multidirectional conclusions, mixed findings, and obvious overall finding of "Hey, supplements might be useful in children who don't eat very well," left me wondering, Why did the authors throw all of these analyses into a single pot when each separate set of indicators seems so unrelated to the others? Further, why did they not acknowledge the previous literature noting the obvious--which they themselves concluded--that any deficiencies are "likely amenable to supplementation"? Then, I noted the final line of their abstract:

Research investigating treatment and its relationship to the co-morbidities and etiology of autism is warranted.

Treatment? Didn't they just say "supplementation"? There are no evidence-based treatments for autism, with the possible exception of early intervention. There is, however, a Wooville's worth of biomedical treatments, including chelation therapy. Enter the dogs.

First, I'll highlight something Prometheus noted about the previous paper from this group:

”Vitamin Diagnostics” currently operates under the name “Health Diagnostics and Research Institute” (home “institution” for author T. Audhya) and is based on South Amboy, New Jersey, just over 50 miles away from the Stockton Family Practice (home “institution” for authors S. Freedenfeld and K. Hamada). However, the more important point is that these “reference ranges” are based on only 48 subjects. By comparison, real reference ranges are based onhundreds or thousands of “normal, healthy” volunteers who are not known (or suspected) to have any illness or disorder. A “reference range” based on only 48 values is beyond ridiculous. And they charge people for these tests?

First up, Tapan Audhya. This Tapan Audhya, on the same list of presenters as the illustrious Dr.Andrew Wakefield. Dr. Audhya has been involved in the last 10 years in nutritional interventions in autism. His "home institution" has already been noted above. Is this the laboratory to which someone interested in impartial results for a study of possible nutritional deficiencies in autism should send their samples for analysis? Interested in this overlap of, shall we say, competing interests, I look at the "Competing Interests" statement for this paper. It says, "The authors declare that they have no competing interests." According to the author contributions section. Dr. Audhya "oversaw the laboratory measurements at Health Diagnostics, and (sic) assisted with interpreting the results and editing the paper."

Next author: Sharon McDonaugh-Means. This Sharon McDonaugh-Means. Dr. Means, according to the author contributions section, was the study physician, oversaw patient care, and assisted with interpreting the results.

Up next: Robert Rubin. Go-to mathematician for all those messy, messy stats...and also, it seems, for this study group in particular--really, really in particular. Email your questions about the stats in this study to him. Interestingly enough, if you google the email address given for Rubin in this paper, you find that Rubin appears to have some involvement with autism, it appears via a now-adult child who has it. Does that preclude his ethical participation in this study? No, but I think it probably should have been noted in the COI statement, as previous autism parents/researchers have done (see below).

You might think that the folks associated with Doctor's Data, a company that does chemical analysis, might be free of specific, potentially conflicting associations. Nope. There's a veryspecific focus on heavy metal detoxification. Dr. David Quig has been involved with chelation studies for a commercial chelator, Bio-Chelat, which cannot be sold in the United States. He also represents big-time in the woo-world, with his name littering searches related to mercury and autism. Should the heavy-metal detox emphasis have been revealed in the COI? In the author contributions, he is described as having overseen lab measurements at Doctor's Data and assisted with results interpretation and paper editing.

Elizabeth Geis. I looked her up at Arizona State. I couldn't find her, although I find a paper about oral chelation therapy for children with autism that had a gmail address for her with the handle "Autismstudynurseasu." She appears on at least three publications from what isessentially this same group of people, and two of them have to do with chelation. According to the author contributions, she was the lead study nurse.

Eva Gehn was the study coordinator, based on the paper, and appears on precisely the same papers, some related to chelation, as Elizabeth Geis. The next four authors were study nurses, according to the author contributions, and also appear on the previous chelation papers, and Wondra Lee assisted with data entry and analysis. She appears to be new to this group.

But, you may say, what about James B. Adams, lead author? You mean this James B. Adams, the one who failed to get IRB approval from his institution for a prior study involving autistic children? From Prometheus:

...there was no IRB approval for this research. The remedy that the ASU IRB told me they decided upon was for the journal to drop Dr. Adams as an author*. I hope that they will also suggest that Dr. Adams receive some training in the ethical and legal aspects of human research at his earliest convenience.

Hmm. Where have I heard of other ethics violations involving research with autistic children. Oh, right. Here.

James B. Adams, lead author/anchor author on a number of published papers related to autism, chelation and autism, and yea, verily, papers published with the Geiers (yep, those Geiers), Not one paper, but three papers with the Geiers, who were huge fans of chelation and whom Adams et al. cite in the paper currently under discussion.

Dr. Adams is not a biologist. He is not a toxicologist or a medical doctor. He is an engineer. As his ASU biography states,

Professor Adams has done extensive research in developing computational models of materials and applying those models to the study of properties of materials. He also conducts research on heavy metal toxicity and autism.

This reminds me of the economist who recently wandered into autism and managed to publish one of the most confusing, self-contradictory studies related to autism that I've ever seen...and that's saying a lot. As it turns out, she also was a member of the board of SafeMinds, an organization convinced that mercury in vaccines causes autism.

Adams now runs this autism-related program at ASU. The stated goal of this program is a laundry list of autism woo:

Our focus is primarily on biomedical issues, including nutritional deficiencies, heavy metal toxicity, and bacterial/yeast overgrowths in the gut.

Dr. Adams is the parent of a child with autism. That's how so many of us get involved, isn't it? But that parent-child association was something that even Gayle DeLong reported in the paper she published. Why is this association not mentioned in Adams' paper?

But there's more. Remember chelation? Dr. Adams has a couple of publications about that, and they aren't research articles:

Adams, JB Chelation: Removal of Toxic Metals, P. 74-78, published in Cutting Edge Therapies for Autism, edited by Ken Siri and Tony Lyons, published by Skyhorse Publising, New York, NY, 2010.

Adams, JB Chelation: Removal of Toxic Metals, P. 97-100, published in Cutting Edge Therapies for Autism 2011-2012, edited by Ken Siri and Tony Lyons, published by Skyhorse Publising, New York, NY, 2010.

He is, as described in the video, on a mission. (Warning: those of you interested in evidence-based practices will grind your teeth to a nub while watching this older video).

I sympathize with his involvement. But it seems to me that he, like Gayle DeLong, should reveal the personal investment.

Questions have arisen before about work from Dr. Adams' lab or institute or whatever it is. A lot of questions.

Bottom line: This list of authors contains several individuals with a very specific and personal investment, in one way or another, in the outcomes and conclusions of this paper. At the very least, that should have been stated in the COI. Finally, I'd insert here the usual caution that this paper is merely correlational, rather than causational, but I can't even figure out what the relevant or significant correlations might actually be. Ultimately, I'd just say that it's confusational.

Watch for this one to blow into the news media sooner rather than later. It's already making the rounds in the Woo-o-Sphere, so it's only a matter of time. In fact, it's already begun. While some people may call it "comprehensive," I'm going to stick with "confusational."

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This is a cross-post in its entirety from my Biology Files blog.

When it comes to development differences, environment dictates when it's a disability

2011-10-02T11:58:00.007-05:00

The other day, the governor of Texas, Rick Perry, commented that attention-deficit disorder should be a "paddleable offense." He compares ADD/ADHD to having "ants in the pants," and says that some kids don't need medications but instead require attention and "tough love." My translation of his meaning of "tough love" is, well, paddling.

I recently tweeted that between my son with autism and my son with ADHD, my ADHD child currently has the greater disability. That may sound odd. But my autistic son is someone who is comfortable in his own skin. He's so comfortable with his autism that recently, in an email to another autistic child, he offered these words of encouragement:

We must learn to love and accept ourselves. It doesn't matter if we're different. Being different is hard at times, but being different is a gift, too. It makes you unique in a good way. I'm not perfect but nobody is, and I'm a good person.

In other words, TH is doing great. Right now, comparatively speaking, our middle son Dubya suffers more negative effects from his ADHD than TH does from his autism. They're such different disabilities. In our current environment of homeschooling with one day a week with a small group of other kids, TH is flourishing. We're all used to his autistic behaviors. His interests fit in with our family environment because they're about nature, trees, the outdoors. These manifestations of his autism are a good fit for our family environment, and while he definitely attracts attention when we're out, it's nothing deleterious to his happiness or function. His autism right now is a difference, but it's not a disability.

Might that change as the environment does? Yes, it might. That'd be our society's version of natural selection.

And in that context, Dubya's got more deficits, ones that add up to disability for him. In a restaurant, he ends up under the table, sliding like an invertebrate to the floor, all the while not hearing our whispered admonishments to get back in his seat. In movie theaters, he calls out, impulsively and loudly, talking to the screen as if he were all alone. If I softly touch his arm to stop it, the gesture doesn't register. If I speak in his ear to ask him to stop, his impulse control is so limited, he literally cannot stop and does it again within seconds. After years and years of reminders, he's still unable to detect when another conversation is in progress and will just interrupt without regard, emerging from his life on Planet Dubya and barging right in, unaware of anything that's been going on previously.

If you call his name to get his attention, the focal deficit there is so powerful that he will actually look at you, but instantly forget why he did so, and then look away again, back to what he was doing. He also has delayed auditory processing, so he appears to be ignoring what people say to him when in reality, he's taking so much longer to process it that you can actually count the seconds and see when it finally registers. He is almost incapable of being still--at all times, some part of his body is in motion. I homeschool him now and have timed his attentional periods. I've found that his attention drifts within a matter of seconds, several times within a minute. Learning in a classic classroom setting could be almost impossible with this kind of deficit.

There are few environments in which these behaviors--impulse control, attention deficits, constant movement, auditory processing delay--are beneficial but many in which they are disabling. In a regular classroom, his experiences have varied depending on how understanding his teacher was. One teacher consistently publicly humiliated him, expelling him with every transgression into a busy hallway where all the other students and parent volunteers and teachers could see him and know why he was there. That year, his tics went out of control. His obsessions and compulsions became so bad, so overwhelming, and so troubling that we took him to therapy sessions for months. His difference had crossed over into disability at that point. We didn't realize the real root of these manifestations until school ended and suddenly, the tics and intrusive thoughts and constant confessions and obsessions essentially ceased. No, Rick Perry, paddling isn't going to benefit this child in any way.

But he had another teacher the next year who understood his disability so well that her accommodations made him able to learn and diminished the magnitude of his atypicality to a difference. It was in the environment that she created that he finally latched onto a love of reading, able to set aside the shame and anxiety that clouded his mind throughout his previous school year, opening the way to knowledge acquisition. He still had his moments in her class. He always will have his moments. But in that environment, his deficits became neutral while his talents--which are multiple and seated in his astonishing creativity--had a chance to shine. Again, environment made all the difference.

Currently, he's with a teacher one day a week outside of homeschool whose understanding of ADHD may not be of the latest vintage. She's not like the teachers I remember from my childhood in the '70s, the ones who took children like my son, mostly boys, and publicly embarrassed and humiliated them. These boys would be isolated from the group or seated in the front of the class alone, or, like my son was 40 years later, sent into the hallway to crumple in ineffectual humiliation and shame as public as a criminal in stocks in the square. The current teacher has kind intentions, and we've met with her to describe a few tactics--stolen from last year's classroom environment--that may help her and him in the current environment so that his differences don't disable him or her teaching effectiveness.

The isolating and humiliation tactics have probably never worked on a child with this disorder, which, I'll add, is far more significant than "boys will be boys" or "ants in the pants." It's a real deficit, one that I've timed. It often goes hand in hand with tics and OCD, and yep, that's what our Dubya has. I've taught a lot of boys. I've taught rowdy boys who, at the end of the day, just want to crash into each other. And I've taught the boys with ADHD. They are not the same.

There is a huge difference between "boys being boys" and a boy with ADHD. One is correctable with words, consequences. The other interferes with daily quality of life in many settings, which means that it meets the definition of pathology, of disability. And I've taught with teachers who viscerally detested these children because of the energy it took to manage them with understanding and grace rather than with anger and abuse. Teachers who would actually talk openly about how they were "going to get" specific boys with this disability. It was painful to see and understand that. And these experiences came before I even had children. When the world sees you that way because of Who You Are, the world is what makes you disabled.

My son's attention deficits and inability to control impulses translate into negatives for him in many modern-day environments. It may be that in some previous setting not associated with our indoor-oriented culture, ADHD was a benefit. At least one study has found a potential link between success in a nomadic lifestyle and a gene associated with ADHD. Recent results from another study suggest that playing in "green" surroundings softens the manifestations of ADHD. These findings always lead me to thinking about E.M. Forster and his fundamental belief in shaking off constraints and being Who You Are.

Is there an environment in which my son's being Who He Is might be positive for him, a benefit instead of a liability? Like many people with ADHD, he is an extraordinarily creative child--we're talking off-the charts creative--the picture at the top is one he did at age 6. His best environment right now is in a room full of Lego blocks, and during his many breaks on homeschool days, I know he's happy because I hear the familiar sound of his digging through the blocks, seeking that perfect, tiny piece of just the right color and shape. He builds perfectly symmetrical, complex Lego creations of his own making, with functioning parts and always with a backstory. He's written and illustrated an epic comic book that runs to more than 100 pages. He's highly gifted, a creative problem solver, a child with a brain light years ahead of his emotional and behavioral maturity. These talents, these skills, must someday find an environment in which their benefits outweigh what are deficits in today's society.

Because of that society, because we can't send him out to live in the woods, As He Is, we have to at least protect his spirit. This protection is important because children with ADHD are at greater risk for depression and suicide. Who wouldn't be after days spent listening to people correct you constantly? Who wouldn't be from a childhood of the shame and misery of wanting so desperately to be a "good" person but getting messages left and right that you aren't? Who wouldn't be after years of teachers who publicly humiliate them, isolate them from their peers, yell at them, purposely embarrass them?

Paddling a child with ADHD or giving them class "tough love" in the form of physical abuse does absolutely nothing to address the deficits these children have. Each stroke of that paddle, each public humiliation just crushes an already fragile spirit, one that suffers a conflicting duality between wanting so badly to be good while constantly feeling like a total failure at it. Given that research has established genes linked to ADHD and brain imaging studies show clear differences in brain function, it is the height of irresponsibility to suggest that these kids could control themselves if they wanted to or be controlled by physical abuse. That simply isn't the case.

An environment like the one Rick Perry describes is not the kind of environment in which my son with ADHD will thrive. It's exactly the kind of environment in which his traits will be deficits, in which, in evolutionary terms, they will be non-adaptive. He will not be selected in such an environment, by himself or others, to thrive and, yes, survive. Instead, as we already know, he will become more anxious, more unable to control not only his impulses but his obsessive thoughts and tics and OCD behaviors. Not only will he continue to be different, but he will become increasingly disabled.

We already know the environment that allows our son with ADHD to flourish. And when I say "flourish," I don't refer only to extrinsics like good grades or fewer reports of misbehaviors. I mean his own internal measure of himself as a good person. Words matter. Consequences and how fit they are for a specific child matter, too. They can determine the distinction between an environment in which one is merely different and one in which a person is disabled from functioning.

That teacher I told you about, the one who made accommodations both intuitive and experiential for our boy, who eased his anxiety about himself enough to let him grow? The last day of school, the last time she saw him, she hugged him, and she said, "Ah, Dubya. I love you so much." Months later, as we were driving in the car, somewhere, as we always seem to be doing, he brought that up. He quoted it to me, described the hug, and said, quietly, "No teacher has ever said that to me before. It made me feel so good." That's the kind if environment for which my son with ADHD is a fit, the one in which his ADHD is only a difference, rather than a disability.

Is the disability rights movement different from other civil-rights movements in a critical way?

2011-09-30T11:57:00.008-05:00

I've seen quite a few comparisons of the disabilities rights movement to other civil-rights-related movements, such as those on behalf of minority communities or women or LGBTQ folk. The one distinction I see between those movements and the disability rights movement is this: The outgroup allies in those other movements are, as a whole, not the parents of the direct actors. Women working on behalf of women's rights didn't first go through a childhood of their parents working in a defined population on behalf of their rights. African-Americans didn't go through a childhood of, say, white parents and future allies arguing with schools or government institutions on their behalf. In those movements, the allies start on the sidelines. The investment is different, the motivation is different. In the disability rights movement, parents fight on behalf of someone who is (often), quite literally, a part of themselves. Their starting point is not the sidelines, but the center.

In other words, involved parents in the disability community have a different sort of investment from these other allies for these other movements. That investment makes it more difficult to draw clear lines between the parents and the direct actors. Rather than being a part of the community out of choice, out of interest in righting a wrong--although surely that is part of it--they are a part of this community because they are literally part of its family. In the disability community, before a child can ever speak for himself or herself, that child's parents speak on his or her behalf. Parents spend years advocating on behalf of their children--disabled or not. If the child has a special need or disability, that advocacy is often a pitched battle with society and its institutions and expectations as the foe.

So, unlike those other outgroup allies who join in civil rights movements because they've seen something wrong, parents are directly, legally, vocally, and (often) genetically responsible for the people who will someday be the adult voices of that movement. That's a different dynamic completely and may explain in part why the best-intended parents feel so cut out or defensive when the direct advocates in the community view them as allies rather than as direct actors, as well. Unlike, say, a white ally of a minority civil rights movement or a male feminist, parents in the disability community have (often) been invested in specific members of the group since their birth and have (often) been fighting, sometimes tooth and nail and with much anguish, for the rights of that specific member specifically because of the special need or disability.

But wait, you say. What about the LGBTQ community? They had parents who often fought on their behalf. And I say, sure, and the PFLAG model is a good one. But here's the thing: Sexuality isn't something one manifests at birth. It's rarely something we solidify before puberty, if even then. Yes, parents who become aware of their child's sexuality can engage society and institutions on their children's behalf, just as parents of autistic children can, but that fight for autism parents begins much, much earlier, indeed often before their child can speak, read, or write for themselves. For many autism parents, it begins in their child's toddlerhood. It's been an investment in that child's entire life on behalf of that child's well being. In evolutionary terms, investment is a big word, something that takes energy and resources and is not to be taken lightly. This kind of investment isn't human-invented narcissism. Instead, forces drive it that parents often don't even know exist, forces derived from genetics and hormones and what we humans would call love.

It's hard and always will be for any parent to let go, although all parents must do so someday in some way or another. I think that after all that parents invest in their fight on behalf of a child with special needs, it may be all the more difficult to stand back when asked so that the first-person voices of the movement--the people directly-directly affected--speak first, loudest, and freely. The child whose voice you hear or read isn't an unrelated member of the human family, someone whose rights have been crushed, someone whose argument for society to do the right thing is one you support out of your own sense of right and wrong. That person is, rather, literally your child. You are the parent who has been there from the beginning, involved not just because of right or wrong but because that child--no matter how old, no matter how able or disabled, no matter how independent--will always be your child.

From that perspective, it's not difficult (for me, at least) to see why some parents feel pain when they are told that they are allies, on the sidelines. In most civil rights movements, the second-person people whose rights aren't directly involved start on the sidelines. But a parent? A parent starts at the beginning, at the core of the family unit that consists of the parents and the child. For years, they are the source of everything that child is and has. For right or for wrong, for mistakes they make and things they've done well, the well-intended parents do it for the love of their child. As with any parent-child relationship involving a loving, well-intended parent, stepping away from that, sidelining yourself as the parent, is probably one of the most difficult volitional decisions you'll ever have to make. It takes a lot more than fighting off the tears as you leave a child's dorm room on the first day of college. It takes making yourself silent for the first time in your life, on behalf of your child, so that your child, now an adult, can speak with the voice of a movement.

Listening to autistic people, no kid gloves, no muzzle

2011-09-25T00:50:00.009-05:00

On a great blog post that was really talking about listening to autistic people, I misunderstood and posted this comment (for which I apologized to the blog owner about because it was off her real point and threatened to derail the on-point discussion).

In that comment, I was too obscure in making the following points, and I didn't want to elaborate further in that venue because I'd already put my foot in it as it was. So, I elaborate here:

1. I think that because of the efforts of autistic activists combined with our efforts as his parents, our autistic son will grow up in a world that's different from the one those who came before him had to deal with. Different in better ways, we hope.

2. Parenting is a world you can't grasp unless you're in it. And once you're in it, every comment or question that seems to hold some sort of judgment about your choices in that role becomes something that is very, very personal. These comments range from "you willfully endangered your child by having him at home" to "vaccinating your child is child abuse" to even the mildest of suggestions ("Have you tried vitamin B?" and "Did you know that Goldfish have trans fats?" (they didn't)). It doesn't really matter what the source is--we're parents, and we're touchy. It's the most invested you can ever be in another human being, in an infinity of ways. I'm not arguing that it's harder than other ways of being, just that it makes people really, really defensive.

3. About half of the rest of the world is female. Yet, I have very, very little in common with many of them. I'll listen to what they have to say about the female condition, but as my own identity is fairly complex, sometimes, what women suggest doesn't apply to me. I also get advice about what it means to be raising boys. Guess what? Some of that just doesn't apply to my sons, and I know that because I am their parent. And finally, but not least, I've received advice from autistic people about what might be going on with my oldest, autistic son,often advice I've asked for, sometimes advice I've not. The odd thing is, that's always the most welcome advice to me, of all the advice or insight I receive. I am *least* defensive about information from autistic people relative to my son than I probably am about any other inputs about parenting. And it's been so, so useful for us, and I've promised my son that autistic adults are out there, able to look back and explain a little about what he's experiencing now. Not all of that information is directly relevant to my son any more than all the suggestions I have received about my role as a woman are directly relevant to me, but it's all been enormously useful.

4. Finally, I don't have an attitude that just because someone is autistic, I need to behave in a totally different way with them than I would with non-autistic people--although in the end, I sort of do. In fact, I've found that I'm often at my most comfortable around autistic people, so I've rarely felt the need to watch my behavior or my words around people with autism, to turn on my social algorithms and "do the socially appropriate thing." In other words, I've never felt the need to put on kid gloves around autistic people. Around different sorts, say soccer moms, that's a whole different feeling for me. I don't put on kid gloves in such milieus as much as I put on a muzzle.

My observation about conflict and bringing it? I was thinking at the time what I blogged yesterday: open, candid discussion helps unravel differences and lead us to better understanding. As I've noted, I'm not so sure about that now. There are very, very bad things happening to real people because of these open discussions, and I'm starting to think that this brave not-so-new world of the Internet is literally not a safe place to open up about anything, especially using your own name, especially if you have a family.

The bottom line is this: I welcome insights about my son or that might apply to my son from autistic people more than I welcome insights from just about any other group or tribe or whatever we want to call it. I welcome insights at any time from people who have something to teach me. That doesn't mean I'm going to agree with every little bit of it, and it doesn't mean that ultimately, I won't decide to do what simply seems the best for our children, autistic or not, based on our own lights. But, at the least, on the very rare occasions that I have disagreed with autistic people, I haven't feel the need to put on kid gloves--or a muzzle.

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ETA: Please read this blog post, which contains a concise summary of the things people say and do that make autistic people feel unheard, ignored, and dismissed. It's just about the best precis I've seen, and I will *not* forget it. I'd suggest that anyone keep them in mind.

The importance of open discussion

2011-09-24T20:22:00.010-05:00

I am a science editor over at The Thinking Person's Guide to Autism. My role is primarily to vet things that have a sciencey bent to them to make sure they're OK. I also have another role, that of a non-neurotypical parent of an autistic child, and I help to vet other submissions from that perspective.

TPGA has been running a series this last week of dialogues. The genesis of the series was a post by a parent whose child has special needs but not autism. This parent wrote a post that some in the autism community took issue with, and ultimately, the upshot was this series of posts, an exchange between this parent--who has no previous connection whatsoever to the autism community--and two autistic adults.

As the parent's turn to post approached, this parent tweeted in a way that I interpreted meant trepidation about how meaningful or useful his participation might be. As an editor at TPGA, I felt that I needed to give him a boost, to let him know that even though the people who take the time to comment may say things he finds painful, there are legions of silent readers he also reaches, that all open discussion should ultimately lead to an unraveling of conflict into greater understanding. As in all such cases of contention, there is a small group of people who comment and who are very vocal, and a much, much larger group of people who are the silent audience.

We then had the Twitter exchange you see posted here. My intent, my thinking, even my clearly written words in this exchange have been twisted and misinterpreted into something that my years of posting on this blog and elsewhere certainly belie. I invite anyone to click on any of the tags to the right, including autism, parenting, and TH, to really learn what my investment has been, what my attitude has been and continues to be about autism and autistic people, and who I am.

Below, I provide what my thought process was as I tweeted with this parent about posting his very first post in this dialogue, in a world that was new to him, to people who were new to him. My responses to him were not remotely informed by any of my experiences with the autistic people involved in either the dialogue or the comment but instead are based in my experiences with a completely different and far more virulent world: the antivaxers. I am not comparing autistic adults to antivaxers at all; instead, I was trying to draw on my experiences of coping with people who strongly disagreed with me and transfer my coping mechanisms to some of the personal pain he might be experiencing, as he had expressed. That was the experiential context in which I responded to this parent, and I list below what my entire thought process was throughout this exchange. For the record, I have not deleted one tweet from my Twitter feed and have no intention of doing so:

The parent in question tweeted something that made it seem as though he weren't sure about how worthwhile this discussion might be, that instead, it might just be something that would blow up all over him.
I tweeted to him to say the following: open discussion is worthwhile, even though no two people in such a discussion may ever fully understand one another. I further noted something to the effect that there are many, many people not commenting and he needs to remember the audience, not only the small vocal group actually posting comments. That applies to anything in the blogosphere and is something I often remind myself of in moments of internet contention.
He indicated further trepidation, based on how people had responded so far.
I tweeted some coping mechanisms I've learned in the course of many years of acrimonious discussions in the virtual world (never before related to contention with autistic adults), which include never forgetting what your real life is all about and never forget that in the end, that it's your closest relationships that matter the most, and that no matter what anyone says about you as a parent, only you can really know the reality of it. I have had people tell me I'm a horrible abusive parent because I had one of my children at home or because I vaccinate my children. From these experiences, I know that I have to remind myself that only I can truly know the reality, as these people do not live my life. I also noted something else I've learned from my vaccine activism: Sometimes, if it's just making your head explode, you've got to take a step away and let others haggle for awhile.
One of the autistic adults who was participating in the dialogue on TPGA stepped in at a later point to ask where anyone had attacked anyone's parenting.
I responded that no one had actually said that, but instead that someone--neither the parent in question nor I--had said "I don't know, it feels like anything a parent says is wrong," and that was an intangible that couldn't be cut-and-pasted as proof. Emotions always have to be taken at face value, as they consist of so much more than tangibles or words or evidence.

That's it. I began that exchange thinking, "Oh, as an editor at TPGA, I should encourage him to go for it, to get into it even though it may be painful, and here are some ways to deal with the pain that may ensue." Why? Because I believed until today that engaging in open dialogue, especially about potentially contentious issues, is the best way to eventually unravel the problem and reach a better understanding.

The end. That's really all I have to say. It's exactly what my thought processes were. I wasn't even thinking of autism or autistic people per se but of how to deal with what feels so personal in an impersonal place like the blogosphere.

Anyone is welcome to comment here on what I've said above, but I'll say right now that I will not be engaging in parsing tweet by tweet anything in that exchange, and I will not bother to counter someone else's interpretations of what I was thinking and feeling and intending when I entered into that exchange. As someone very wise said to me recently, that's the place to draw the line, and that's where I draw it.

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Edited to add: I have long been a proponent of open discussion. I have long had a belief in the ultimately beneficial outcomes of it. I am now much less sure about it, although that feeling may wane.

ETA, again: Please read this blog post, which contains a concise summary of the things people say and do that make autistic people feel unheard, ignored, and dismissed. It's just about the best precis I've seen, and I will *not* forget it. I'd suggest that anyone keep them in mind.

What do people say to you when you tell them your child has autism?

2011-09-17T11:27:00.008-05:00

The question asks it all. I've gotten different responses, but they all fit within a short...spectrum...of response, most of them related to "I'm sorry" in various permutations. I'm sure people have a hard time knowing what to say. The way the news media present it, the experiences that some parents describe, the movies that have depicted it. What would you think of to say if someone told you their child had autism and your only "experience" with it is Rain Man? (Which, by the way, says more about the time in which Hoffman's character would have grown up than it does about autism).

I never feel that pity is in order, and my struggle becomes what to say in response to it, how to convey that TH is one of the lights of our lives, one of the best people we know. It's awkward, and I've already blogged about what I think I'd like to have as a response.

But a couple of weeks ago, I got the most unusual response I've ever gotten. We were on a rafting trip with a guide named Alex. As I always do, I extracted Alex's life story from him, basically interviewing him almost the entire time we were on the raft, except during some fairly thrilling class III soakings. He's majoring in social sciences, grew up on rivers, and rafted this one with a whipcord wiriness that made us all feel pretty damned safe.

There was another couple on the boat who had two fifth graders, and as almost always happens in such situations, we got into discussions of schooling. Of course, we said we homeschooled our two oldest--who were there on the boat with us, as was our youngest boo--and Alex asked why. I turned to where he sat in the stern and said, quietly, that our oldest has Asperger's, a form of autism. I was about to elaborate on why, about how homeschooling had resolved any number of issues, going well beyond the academic, when I was stopped cold not by the chill of the Colorado River but by the unexpectedly chilled-out nature of his reply. His response? "Really? Cool."

I know that some autism parents don't see a damned thing about their children's struggles that is "cool." Alex had already spent about an hour around our sons. In fact, he'd deprived TH of his paddle because poor TH just didn't have the upper body strength (hypotonia!) to paddle effectively when that was required. Alex had picked up on various cues, but knew that we weren't representing as heartbroken or deeply anxious or concerned. And so, he said, "Cool," bless the man.

And I was pretty cool with that.

We've all got our Something

2011-09-15T09:53:00.004-05:00

What does it mean to be neurotypical or not?

Someone told me via email that I seem to be "demand(ing) all the trappings of neurotypical privilege" in public while saying that I'm not neurotypical, and I'm wondering about many aspects of it. First, I'll establish that I am what I say I am. That means that I'm a scientist, writer, editor, mother, life partner, and friend. There are adjectives to describe me, as well, but that's a longer list, and I'll avoid both the embarrassment and the indulgence.

What I do know is that I've spent a lifetime being anything but neurotypical (I'm still not sure what that is), and I think I've made at least that much clear. As a woman--what the parsers of Victorian literature would probably call the "odd woman"--I have had my share of negative experiences related to how my brain works and my behavior, so it's odd to me that someone would describe me as "demanding" the "trappings of neurotypical privilege" in public. I've never demanded any such thing, nor, to my recollection, have I ever experienced them, whatever they are. In my mind, my experiences have been a long string of social learnings, beginning from when I was very young and continuing to today.

I didn't coalesce my feeling of oddity into an identifiable unit until I was in my 30s, but I was aware of not fitting in at least from first grade on, which was easy because my peers made me very aware of it. My social ineptitude and blindness led to considerable childhood misery that included suicidal ideation from a very young age and repeated sentimental listenings of Simon and Garfunkel's "I Am a Rock." As is common with people having my social incapacities, I found myself by junior high in a group of hooligans, struggling to fit in with them because the people who were more like me in other ways--grades, socioeconomics--would have nothing to do with me. The hooligans didn't like me much, either, and my greatest triumph from that experience is that I never ended up in juvy.

My parents, in a hyperreaction to get me away from the hooligans and the limited schooling options of my hometown, opted to send me to boarding school my freshman year, when I was 13. A very emotionally immature 13. My 13-year-old self was a mass of contradictions, like most 13-year-olds, but I was even more extreme, unable to read people, unable to tell when they were mocking me until it was too late, subject to some of the most extreme 24-7 bullying imaginable. I wandered alone in the wilds behind the school, read books I liked instead of doing my homework, and once again fell in with a group that could never be described as well behaved. And underwent systematic, methodically cruel mental and emotional torture from the girls around me. Dickens could have written my life in those 9 months and it wouldn't have been hyperbole, but the thrashings would have been mental, rather than physical.

That boarding school year sounds like a mistake, but in hindsight, I think it might have been the best thing for a girl like me. What better way for an inept to learn about social interactions among my peers than to be immersed in those interactions every hour of every day? Was I good at it? Nope. But I came out of those 9 months with an arsenal of information about how people my age thought and behaved, what drove their interactions with each other and with me, how to function among them. I'd learned that my way of association was to use social algorithms, the if-then constructs of small-talk social exchanges that I still use today. It has been immensely useful to me, and I still think of those girls in that school and how much they taught me, often by being mocking and cruel, but the lessons remain good ones.

Indeed, today, I'm so stuck in my algorithms that I'll proceed with one even if the other person's taken it off into a different algorithm. My most common error is to enter into the "How are you?" "I am fine, how are you?" exchange, assuming that the responder will provide that "how are you?" question in return. Even if they don't, I'll still respond, "Oh, I'm fine." I've never been able to tell if people notice it or find it odd, but I do this one all the time. I'm stuck in my ways now, and I can't seem to get a pause inserted into that one to make sure the question gets asked.

I still collect my algorithms, watching people exchange small talk, picking up tips and adding in bits and pieces to existing ones, but for some reason, that oldest of algorithms is one I can't modify for specific situations. If we're past small talk, I'm just genuinely Me, doing one of two things: listening sincerely and intently (which I do a lot) or talking too much, probably being overly loud or overly enthusiastic or swearing a lot. But those more superficial exchanges that come from a place of social niceties rather than being born from the gut? Algorithms.

Another problem for me is reading faces. I can remember faces better than just about anyone I know. If I haven't seen you for 20 years, I'll still probably recognize who you are and link your name and face. I can identify the most obscure actor in a movie and list that actor's previous film and television credits. But if I say something to you that's offensive, subtle facial expressions and body language--especially passive-aggressive behaviors--in response will go right over my head. I will not know I've offended unless you tell me. Then, I'll feel bad. Very bad. And I'll apologize. If a person laughs with gusto or expresses what they're thinking in honest words, I'm all good, but those subtle or passive-aggressive behaviors? I miss their implications entirely. My life history is littered with such overlooked passive messaging, and I sometimes laugh at my idiocy when I think about cues like these that I've missed. We're all dumb about something, aren't we?

People have commented to me about my behaviors throughout my life. I've got a decades-long reputation for being blunt. People say things like, "Why don't you tell us what you really think, Emily?" I've blurted out some honest observation at the wrong time and put my metaphorical foot in it. My friends and family know how I feel about hugs (and no, I don't think it's funny if someone knows that about me and then gives me a big, long bear hug. Not funny at all). And I've heard about my flat affect, including from total strangers who drive me up the wall by saying, "Smile! It can't be that bad!" when all I'm doing is walking through the mall. Which, by the way, is kind of that bad, but that's not why I'm not smiling. I won't even get started on my feelings about crowds, lights, noise, or Costco.

Then one day, shortly after I started my postdoc in my mid-30s, a resident who was doing research in the lab met me for the first time. I was in a state of high excitement because I'd just had a hilarious exchange with a postdoc from Brazil who was saying the word "urine" to me in Portuguese and somehow, I couldn't understand the cognate. So he and I were rather hysterical by the time she showed up, having finally understood each other. I tend to get sort of...edgy looking...when in the midst of high hilarity. She took one look at me and said, "Hmmm. There's something here, isn't there. You've got something. What is it? ADHD? Something." I must have had that look in my eye, that slightly manic laugh over the word "urina," and she picked up on it immediately. She, of course, must have had a "little something," too, as that was pretty much the first thing she said to me. But her comment was like the proverbial lightbulb in my mind and brought my lifetime of social experience into that light, experiences that now took shape as Something. I've never sought to have my Something named. It was simply useful and somewhat of a relief to know that it was there, recognizable for people paying attention.

In the end, we all have "a little something." Some of us have more Something than others. I don't know what the privileges are of someone who's less Something and more Neurotypical because I've never been that way. Thirty or even forty years ago, I might have benefited from having my "something" labeled, maybe, if people had understood the label and used it to understand me. We use our sons' labels to understand them and as shorthand for the world, and we advocate for them and their future in part on behalf of those labels. Labels are relevant to me but not as important as generalized perspective taking and embracing neurodiversity in all of its forms.

As for me today? The labels I use are the ones that fit my current roles: scientist, writer, editor, mother, life partner, and friend. Considering my past, considering my social struggles and my presentation as the Odd Woman, my ability to bear each of those labels is an enormous privilege to me. And that is something.

TH proposes a new holiday: Pine Tree Day

2011-09-07T14:26:00.005-05:00

As TH is the one involved here, you have to know that somehow, plants are involved, too. His writing assignment today for homeschool was to create his own holiday, complete with symbols, how it's celebrated, and imagery. After debating over whether he should just create a holiday for himself, TH the Great, he instead opted for Pine Tree Day. As I said, if it's TH, plants will be involved.

I liked his proposal so much that I've decided to reproduce it here. Pine trees are central to our lives. I don't know what it is about them, but when I'm among them, I'm at my happiest and most relaxed. If I can see them, it's visual marijuana for me. TH shares this feeling (presumably minus the marijuana analogy), and when he was little, just diagnosed, and we lived in San Francisco, I actually included "love of pine cones" as a bonus qualification in my craigslist post seeking a nanny/therapist for him. This conifer love runs deep around here.

So, without further ado, Pine Tree Day, in TH's own words, spelling corrected:

My new holiday is called Pine Tree Day. It is on December 22, and I (T.H.) founded it. This is the representative symbol (see symbol on balloons in his picture, above). On Pine Tree Day, you can get free baby pine trees (like the one pictured). This is who celebrates it: Canada, Alaska, Wyoming, Montana, Colorado, North Dakota, and South Dakota. On Pine Tree Day, be Green. Recycle, don't litter, and most of all...don't SMOKE! Also, you can hide pine cones like Easter eggs!

Happy Pine Tree Day!

Is Objectivism autism rebranded? Nope

2011-08-25T22:58:00.006-05:00

[Ayn Rand. Is objectivism autism rebranded? Um...no.]

Thanks to Kim Wombles, I have come across the following from Sam Harris (yes, that Sam Harris):

The result was Objectivism—a view that makes a religious fetish of selfishness and disposes of altruism and compassion as character flaws. If nothing else, this approach to ethics was a triumph of marketing, as Objectivism is basically autism rebranded.

Really? Kim sent him an email saying what probably is obvious to anyone who knows someone with autism, but Imma say it here:

Autistic people do not make a religious fetish of selfishness or dismiss altruism or compassion as character flaws. I'd think that a neuroscientist might be aware of what underlies autism and how it is manifested, but evidently, that is not the case. I would think that a well-educated, aware human being wouldn't take a neural difference or disability and use it as fodder for mockery, but evidently, that also was not the case. I would think that for someone who purports to lay the humanist groundwork for what qualifies as morality, mockery of a specific population of people who are "different" because of their neurology might be considered, well, immoral, but evidently, that is also not the case.

For anyone...Sam Harris, whose writings I usually admire, others who think that autistic people focus only on themselves or lack a sense of altruism, I refer you to the following about my own autistic child. I'm sure that the most minimal research into other stories or simply talking to an autistic person would provide further enlightenment.

Figeater beetles and executive function

Lint in heaven

A brave boy in a brave new world

That's Asperger's, please.

Interview with an autistic child

A social surprise

Teaching TH...and learning from him

Yes, he shows empathy

Vaccines are their own worst enemy...because they work so well

2011-08-23T11:34:00.004-05:00

A new post of mine over at PKIDs blog, where I'm a regular blogger. It starts like this:

What’s not to fear directly about vaccines? There’s a needle that someone pokes into your child. Your child screams. You tense up. What’s in there? you wonder. Viral or bacterial bits that, in ways that are mysterious to a non-immunologist, will keep your child well when intuition seems to say they ought to make your child sick.

Needles, screaming, microbial bits…these naturally would make any parent blanch. The number of vaccines has added to the fear for at least a decade, leading to non–evidence-based calls to “spread out” the schedule or reduce the number of vaccinations. More...

A look at the bullying experiences in our lives

2011-08-21T13:48:00.007-05:00

Someone has put together a nice compendium of quotes from my blog, so I though I'd provide it here with links to the actual posts. What struck me about this series of quotes is that they all have to do with bullying of special needs children. Sometimes, when I review our lives in this way, I start to lose hope that society's attitudes about bullying will ever change.

"However, I am armed and somewhat dangerous, so don't try stalking." OK, so that's not from my blog. It's from something I posted somewhere else. However, anyone considering bothering me should remember that in this country, we have the right to bear arms, the right to arm bears, and the right to be armed with bear spray.

"The first words out of that man's mouth at this meeting were, "There doesn't seem to have been any ill intent involved." My regret? That I didn't immediately leap onto his desk, reach out and abrade his face in three places with my fingernails, and then ask, "You tell me how someone does that without ill intent." This one still leads me to reliving that moment. Do I *really* regret not leaping across his desk? Well, no. If I'd thought that was a constructive thing to do, I'd've just done it. But that memory leads to a flood of disbelief that anyone could say that about that particular incident. If we're to address bullying in any effective way, adults in responsible positions are a starting point. Hey, adults in responsible positions: Don't countenance or defend or diminish bullying. OK?

From the same post: "Instead, we listened to him bullshit us for an hour, ducking and dodging my husband's pointed and persistent questions, and then we left. We then withdrew our son from school, and he has been happily homeschooled ever since." Yes, he has been homeschooled ever since, and it's been great. Best thing we could have done for him, so I guess our interactions with that invertebrate ended up on a positive note. But we left the system instead of staying to change it while our son endured more torture. We had to do what we had to do.

From my post about a boy at a vacation "resort" who mocked my son. "Unfortunately for the boy, TH's uncle was there, and this uncle--my brother-in-law--stepped in and handled this little dipshit in exactly the right way. Fortunately for said tween dipshit, I was not there to step in because had I been, I'm afraid there would have been more than stepping involved." Although it's not included in the post, there was ultimately more than stepping involved. There was walking, escorting of that child to his parent, whom we apprised of his various inappropriate activities. This, my friends, is one way to end the bullying--let the bullies know that there will be consequences for what they do.

From the same post: "Why does it surprise me that some little bastard of a tween would detect my son's differences and decide to mock them in that way?" From the same post. Why does it surprise me? I'd become too comfortable around people we know well. That's why. Because we chose to protect our son rather than expose him; see "homeschooling," above.

From the same post: "I can be deluded no more. What happens when children like mine, the ones who often can "pass," who are not candidates for specialized living facilities, encounter the assholes of the world outside the protection of those who love them?" This question stands. Certainly not all children who bully grow up to be adults who bully, but it's pretty easy to identify the adults who are bullying assholes. The question is, What will our children, as adults, be able to do about it? We can't provide protection all the time.

Speaking of bullies, we'd had so much in the way of people bullying our oldest that when our middle child bullied another child in his class and then accidentally knocked a little girl down in class by being too impulsive, we had some lessons to learn. The little girl, as I relate, was just fine, thank goodness, but I thought we'd have to commit Dubya for awhile there. "The day I emailed the teacher, Dubya, in a rush to reach the end of the lunch line--yep, you read that right, the end of the line--knocked into a little girl in his class. She fell, bumped her head on a table, and literally was knocked out cold, at least briefly. My son, having bullied a boy in his class, now had knocked a child out. Good times, these.

Dubya was horrified, in tears, his teacher worried he was traumatized. I sort of hoped that he was. Why? Because he does that kind of thing all the time, rushing past people, pushing his way through, thinking only of what he needs to do, where he's intent on going. I'm huge compared to him, so when he pushes past me, I don't go down and sustain a concussion. But this little girl? In the end, she was fine. But Dubya...not so much." That was a horrifying experience. We had to grapple with the fact that after all that our oldest had endured, our middle child had been teasing another child because...he was different.

Finally, remember this incident, with the father getting on the bus to pin down the bullies of his defenseless, special needs daughter? How many of us can relate to this father's impulses? "So, some people probably are going to think that this father was out of line. I think he was out of line, especially with the language and using, in his turn, his size and his anger to intimidate these boys. But in spite of that cool assessment on my part, there's a hot little core inside of me that supports his behavior fully, right down to the f-bombs. Why? Because if he didn't scare the shit out of these boys--likely ensuring that they'll at least think twice about doing something like that again--who will? Certainly not the adults in charge. What kills me is that the county sheriff's department says the father, who is facing charges, should've called them. Right. How much time and effort do you think they'd've put into investigating that? News reports say that the father had, in fact, tried to report incidents to county school administrators previously, to no avail. Big shock, that. The bullying, according to reports, had been going on since school started." One of the upshots of this horrible situation was, according to this report, that the bullying of this child continued and the daughter had to be placed on suicide watch. Also, there are allegedly some suspect connections between the district and the family of one of the bullies. So, I'm guessing that I was wrong in hoping that by scaring the shit out of these kids, the father would be successful in stopping the bullying. What is the recourse here?

As this little trip through Daisymayfattypants Land reveals, bullying comes from many quarters, but it's not only the bullying that we must face and fight--it is also those who look the other way, fail to confront it, or even countenance it. Does it make me angry when people bully my child or when I learn of others who do it without repercussion? Yes, it does. Our resolution has been protection. Not every parent has that luxury. But they--and we--shouldn't have to resort to that. What needs to happen is for bullying to get its due. And the time for that has long since passed.

Serendipity or phenotype?

2011-08-20T10:59:00.006-05:00

I've always thought of TH as unique. I think many parents view their autistic children as not only quirky but also simply unique. There's just no one else like my oldest son. How could there be? He's got a seemingly disconnected and unduplicated collection of interests and obsessions, behaviors that are his and his alone, a way of living and being that's unmatched. At least...that's what I thought.

This summer, a family came to stay for a few days in the townhome across from ours. We knew they were there because Dubya, our middle son, came rushing into the home, uncharacteristically excited about meeting someone new. The "someone" was a boy about 11 years old whom I'll call Denton. This child, it seemed, wanted to meet us. Was waiting in our garage to do so.

Did I find that odd? Yes, I did. In part because Dubya was so so so enthusiastic about this Denton and in part because I've never, ever encountered a peer of my children who actually asked to meet me.

So, I descended into the garage to see a gangly boy, all elbows and angles, glasses, and...yep...that's it: a little bit of toe walking. He extended a hand, greeted me with a perfect script, and started telling me about ghost stories. I knew, without further data collection, that I was in the presence of one of our own. That Denton was from France.

What baffled me was Dubya's enthusiasm. The more I talked with Denton and watched him, the more I saw clear parallels between his behaviors and those of our oldest, TH. Yet, TH, the older brother, had the power to drive Dubya to the edge of reason, pushing buttons on that child that only older brothers can find. And here Dubya was, attracted to this boy who was so much like that needling, button-pushing older brother of his. Maybe it was those two things, that Denton was a person whose behaviors were well within Dubya's comfort zone and that Denton was not his big brother, that made Dubya so happy and excited to meet this new, chatty, sweet open book of a friend.

Then, we brought TH and Denton together. And that's when bemusement turned into wheel-grinding analysis. Why? Because these two boys who had never met seemed to have been living parallel lives complete with parallel likes. I'm not making it up when I say that one of TH's most notable exclamations (and one I secretly think to myself about 20 times a day) is, "Curse you, laws of physics!" And I'm not lying when I say that in the midst of the biggest "I love Pokemon, I love Mario, you have Wii!" geekfest I've ever heard--and damn, but these two were LOUD--I heard Denton holler out, "Curse you, laws of physics!"

Mario, SuperSmash Bros. Brawl (and with both boys pronouncing it "broze"), Pokemon--complete with a full-blown "I know more about Pokemon than you" competition, loud unmodulated voices echoing through the house--it was like TH had cloned himself at full volume. They're even both obsessed with ghosts and UFOs, each seemingly trying to out-talk the other to get a ghost story in edgewise.

As I pondered all of these similarities--I mean, really...there's a phenotype interacting with culture here, right?--Denton's mother came over. In the usual exchange of "Where are you from" and "Where do your kids go to school?", I kinda sorta purposely dropped that we homeschool TH in part because he has Asperger's. To no surprise, Denton's mom exclaimed that Denton, too, has Asperger's. And then, after considerably more conversation--can two autism parents ever get together without canvassing and comparing their children's entire early development?--came the kicker.

Regular readers of this blog or anyone who knows TH knows what his greatest obsession is. As it turns out, Denton has, throughout his lifetime, had the exact same obsession: Acorns. Collecting them by the dozens. Obsessing over them. Making designs with them. Getting upset if you try to throw them out. Acorns, people. We're talking a Scrat-level obsession with the little nuts. And here, there were two of them.

Asperger's and acorns. I'm dying to get my hands on these children's gene sequences. Do you think they carry an Acorn-loving gene that underlies this phenotype? In all seriousness, though, it's these behavioral manifestations that make me look to the future with some excitement, hoping that the fine-combed explorations of the genome will turn up some genetic underpinnings to explain this mutual cursing of the laws of physics and this mutual love of Mario, Pokemon, ghosts, and...acorns.