NPR's Asperger's piece: All things not considered

NPR’s “All Things Considered” ran a piece today (Wednesday) on the difficulties in defining “mental disorders.” Based on what is posted on their site regarding the piece, they essentially report the opinion of one man, Allen Frances, who has taken it upon himself to do two selfish things. The first is that he blames himself for what he calls the “Asperger’s epidemic.” The second is that he felt compelled to discuss some unfounded–or at least, unsupported–assumptions about Asperger’s diagnoses on NPR.

I've blogged the above in full over at The Biology Files, but wanted to add in a few even more personal observations here.

Our oldest son is diagnosed with Asperger's. He received this diagnosis at age 3, almost 4, when we lived in San Francisco. There wasn't any effort to "get" the diagnosis for school; in fact, TH was referred by a speech language pathologist who had done screenings at his preschool. We always knew that he had significant deficits in social interaction and some other clear oddities, and the Asperger's diagnosis--or "high-functioning autism"--was an obvious fit, as he was using language "on time"--not pragmatically, but the words were there. If there's one thing that I take issue with in the diagnostic criteria for Asperger's, that would be it. It was this feature that distinguished his diagnosis from Autistic Disorder.

Our middle son has a diagnosis of "provisional Asperger's" (among other things). In some ways, he's more the "little professor" type with his literalness, tendency to monotone monologuing, lack of perspective taking, etc., while TH is more of an autie with his behaviors like flapping and echolalia. We did not seek an Asperger's diagnosis for our middle son, and he does not receive related services at school. The way IEP-related services work at our school, a child receives help for one of three reasons: (1) academic need (e.g., an aide or collaborative classroom as academic support for work the child cannot complete alone); (2) occupational therapy needs (e.g., for motor delays); and (3) speech therapy. Our oldest son received all three when he was in district, while our middle son receives none because he does not need them, and we have not asked for them. He's complicated, and his needs are not academic.

For us, an Asperger's diagnosis was not something we sought. It was something a medical professional diagnosed. And I doubt to the very tips of my toes that we have received anywhere near $50,000 a year in supports for our oldest child at any point in his schooling. Indeed, I now school him, so we pay our taxes and receive nothing--scholastically speaking--in return.

I think the thing I take most issue with in Frances' words--aside from the utter lack of citation of any supporting data--is his description of an academically able child who's "socially shy" as being the typical recipient of an Asperger's diagnosis. This description shows, in my mind, a lack of understanding--dare I say, empathy--for what it really means for a child who has Asperger's or autism. "Socially shy" comes nowhere near describing it. Based on our experiences with our sons and what we know for other autistic people, the kind of anxiety they feel in new situations or with new people is more akin to sheer, unadulterated terror. I know that is how my sons react.

Only today, we took our middle son to meet the social skills teacher. He was almost paralyzed with fear and anxiety. He barely spoke a word. He never once looked at his teacher. This isn't just "socially shy." It's paralytic anxiety, and my children have it in every single novel situation--and often even in more familiar scenarios. In other words, it's more than "shy," and it's debilitating. In my mind...and in the typical lexicon of "mental" illness speak...that qualifies as a disorder, not just some kind of eccentricity.

Traumatized by his own bullying

I've blogged here about bullying before, primarily from the perspective of a parent whose child has been bullied. This post, however, presents our experience with a child of our own who participated in bullying. Yep. That's right.

Let me preface this by describing our experiences watching A Christmas Story. The movie has much in the way of figurative language and a number of dream-like, surreal sequences that give insight into the main character's mind. Our middle son, Dubya, as we watched this movie, required explanation of every single instance. Every figure of speech needed explicating. Every dream sequence left him mystified, confused about why the story had suddenly shifted in that way. He is our most literal child, and he struggles with the figurative. He also struggles with understanding when the things he says might hurt someone's feelings. To him, what he says is simply true. Why would something true be bad to say? It's a lesson he needs to learn. To wit:

Dubya, he of the sweet heart and mind, tics, ADHD, and OCD, compulsively tells me everything. Thus it transpired one day after school that he began to tell me all about a boy in his class, Belushi. Belushi has a reputation as a child with "issues," as we say euphemistically. For reasons we're still trying to determine, he has specifically latched onto Dubya, wanting badly to be his friend and, as far as we can tell, in that impenetrable calculus of childhood, putting off his targets by "trying too hard."

We've spoken with Dubya about Belushi before, urging him to be civil, to be kind. Dubya notes that when he does so, Belushi takes this as an opening for firm, lasting friendship and latches onto Dubya like a barnacle, urging overnights and other fun, friendship-like gatherings. Again, for reasons Dubya can't articulate, this urgency puts him off. Bottom line: He does not like Belushi. We've told him that it's OK, that you don't have to like everyone, but that he still has to be civil, be kind.

That day of compulsive confession, I learned that Dubya and a group of boys in their class have been bullying Belushi. Specifically, they've been acting like Belushi has the "cheese touch" and making a production out of any occasion in which Belushi touches them or their things. From what I can tell, these boys are loud and open about this. Up to that moment, we'd been rather pleased that one of our children appeared to be sort of popular, well known in the class for his art and his ninja-like Lego abilities. That he was friends with the, you know, popular kids.

We were now appalled. We were horrified. We asked Dubya, "Why, given all that has happened to your brother, why are you doing these things?"

And his response? A shrug of the shoulders, not to blow off the question but to underscore the ambiguity of the answer: "I don't know. He's just...different." If this is what being one of the popular kids gets you, I'll take my children as utter nerds, thanks.

Much discussion ensued, discussion that included, yes, pointing out that he, Dubya, was the pot calling the different kettle black. Much forcing of perspective taking--one of his biggest deficits--bringing him to tears as he realized how Belushi might feel, how his parents might feel, knowing that children are doing these things, saying these things.

And then, the very next day, Dubya did it again. How do we know? Because he's a compulsive confessor. More discussion about perspective taking. A huge, painful discussion about the other boys involved, about their role as friends--or not--to Dubya himself. And I emailed the teacher and made her aware of the situation.

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.

He's stopped with the cheese touch business. He's working very hard to say kind things to Belushi. He's not spending as much time with the other boys who, it seems, are systematically bullying other children in the class, too. He's realized that kind people don't behave that way.

The drawback is that now, he's obsessing (again) over his every word, every move. Knocking a classmate unconscious hasn't helped any. He comes home daily from school with a list of things he's said to ask if they were OK or offensive. He genuinely has no idea and needs clarification and assurance. In other words, he's in his own world and cannot take the perspective of someone else without outside help.

He's also returned to much of his obsessive behavior, things that had ended when school ended last year, when he was no longer with a teacher who publicly punished him several times a day by sitting him in the hallway to absorb the stares of every passerby. As quickly as school was out, the constant confessing, obsessing, catastrophizing, and other OCD/anxiety behaviors all but ceased. Now, they're back. We're talking about why that is--that he's worried about making a social mistake at school, about accidentally hurting someone's feelings because he, Dubya, just can't tell what's painful and what isn't when it's simply all true to him. So much for relying on trauma to fix things.

So...Dubya's going to social skills class. The class has been such a success with TH that we hope Dubya finds it helpful to him. He's not going to be participating in overt, systematic torture of a boy in his class even without taking social skills. Not on our watch. But we're hoping that what he learns will help him stop systematically torturing himself over what's right and what's not right to say to someone.

The ghost of Christmas past: 1974

Warm cinnamon sounds, kitchen clanking, ice cracking, footsteps shuffling.
TV chiffon dancers swirl unseen to Lawrence Welk Geritol polkas.
The tree, false and green, lights with facsimile fire, flashes on gifts gold, silver, red
Square and regular, odd and eccentric, from manners and the heart.

Everyone old, some older, tall, kind, soft-voiced. Not Tres.
Tres loud, smoking, hand-grasped beer sweating beads.
Jaynella, tight green jumpsuit, squashing in his lap.
Uttering rude-voiced, smoking words, curling around unnatural blonde hair.
A heavy belly of liquor firing syllables that grate.

In heavy air, Old Lady, over low stove, chair wheels rubber on knotty pine doors.
Stirring, lifting Revere lids, poking, peering.
Sips at gold cup, wafting single malt. Fat dogs at her feet.
Little Miss helping, adding egg to thickening gravy.

In every room, warm and cold toddies, egg nog, sherry, brandy, beer.
Tres fascinating, reckless, sarcastic, wild, electric attraction.
Jaynella, loud, brash, repellent.

Fesda avoiding her and something else.
Fesda near the hot hot fire, wishing for no smoke, no dogs, no in-laws, no particular order
Holds Baby T closer to her breast. But knows Little Miss sees only magic.

All talk at once, laughs, loud and maniacal, time to eat.
Plates passed and emptied, naked bird, falsely grown breast to feed the gluttoning multitude.

Old Lady, cushioned in squeaky black Lazy Boy.
Gold glass filled with single malt. Wheeled chair folded neatly beside.
Smiling, glad of the crowd, the noise, the child interested under the tree.

Evening wanes. Fantastical clothes shimmer and shade in firelight.
Tres mumbles in mingled stream, Jaynella, ladylike, retired, open-mouthed napping with fearful noise.

Old ones, gathered on couches, comfortable chairs.
Talk of old death, new life, quickening gossip, stiffening bones.
Aged smiles through young teeth.
Little Miss, at their feet, listens.

Fesda in kitchen, away from smoke, noise, drunkenness, dogs.
Baby T in bassinet, squeezed-shut eyes, dreaming unaware, perhaps of milk.
His mother wishing his new pink lungs home, away from this place.

But Fesda still beautiful, Renaissance Madonna hair falling amber over lace blouse
Tucked into festive seasonal skirt.
Through the haze, she sees herself, now and then
Looking like a light golden holiday, falsely,
Weighted with the grey steel truth of memorial.

She's had classes in autism, people. Don't offer any suggestions

It's eye opening to run across these kinds of things in the blogosphere, outside of this nice little cocoon of friends, families, therapists, and autistic people who--while we don't always get along, at least always get it. Because we all are so avidly interested in autism, regardless of perspective, because we all understand so much about it, it can be a shocking and, yea verily, unpleasant experience to learn how people who do not understand it respond to it.

Take this blogger here. She writes about seeing a child in a restaurant engaging in SIBs and how the child's parents ultimately had to leave because the child was so upset. She seems to take pride in the fact that she, the writer, identified the child as autistic, but she also is so upset by what she's seen that she cries a lot. A lot. And calls herself "scary hormonal Boob Nazi" because she's not on birth control any more.

I'd hazard that an absence of hormonal regulation is not the only issue here. When autism parent, longtime blogger, community autism activist, editor of and contributor to Can I Sit with You and the Thinking Person's Guide to Autism, and BlogHer contributing editor Shannon Rosa made a suggestion about what the Boob Nazi and her commenters might be able to do in future, similar situations, the Boob Nazi did not take kindly to it, informing Shannon that as a newbie to the blog, she, Shannon, might not be aware that the Boob Nazi Herself is a Speech Therapist. But it gets better.

Shannon posted again, a useful link about understanding autism via an interview with Phil Schwarz. Why? Because a comment on Boob Nazi's post refers to disability or difference as being related to original sin (!), and well...because knowledge is power. This kind of thing that happened in the restaurant isn't about people tolerating what was happening. It's about people accepting what was happening.

And this was a great moment, given the comments, to expand understanding. Many commenters are wholly compassionate, many seem to get it. But it's shocking, frankly, to read comments about "original sin" and other sin-related garbage and to realize that sometimes, people like that are staring at our children, thinking about God's punishment imposed through them. Through our kids.

What was Boob Nazi's response to Shannon's comments? Why, it was to say the following: "Thank you for the links, but I've had classes in autism before. Please don't leave me any more comments." (BF and italics mine.)

She's had classes in autism before. And somehow, that trumps anything that an autism parent or an autistic person might have to offer in terms of perspective about her experience. Her classes in autism trump the voice of years of 24-7 experience with autism. That's all she needs, people, as a therapist, as a woman and Boob Nazi who weeps at SIBs in a Disney restaurant, as a person. Wouldn't that be great if say, I could take a few classes in neurotypicality and come away with, like, a totally deep understanding of it? Woohoo!

Then, I read her comment caveats. She has "two rules: 1) Don't give me unsolicited advice. 2) Don't link to your own blog in the comments. Both just annoy me like no other."

Mind officially closed.

I think we could just drop the Nazi from her self-imposed epithet. It's not required for the purposes of accuracy. The bottom line is this: Why just cry? Why not open your ears and eyes to effective ways of response?

ETA: She's removed comments and added in, as Liz Ditz notes in the comments to this post, a "snarky" intro that includes the following: "I just don't like unsolicited advice, especially from strangers on the internet (sic)." I'll just let the fact that this comes from someone who calls herself The Boob Nazi and who blogs publicly...just sink in.

Autism, MRI, and mitochondria

For the all two of you who are just dying to know my take on the MRI/autism and mitochondria/autism studies, the interpretations are now available.

Shannon Rosa graciously asked me to blog the studies over at BlogHer, and I was happy to oblige. You can read that post here.

If you're looking for a more sciency version, I've got them set up as two separate posts over at The Biology Files. The sciencier (I'm just making up all kinds of words here) MRI study writeup is here, and the mitochondrial one is here.

Thanks for stopping by here or any or all of these!

Have you been attacked online? What do you do?

Someone recently observed to me that the "vaccine wars" are a lot like the abortion wars in terms of the intensity of emotions involved and, yes, the threats and vituperation that accompany them. As with the abortion wars, there have been death threats against pro-vaccine advocates. They've been compared to baby eaters and whores, confronted with wishes for their demise or autism or a terrible affliction for their children, described in graphic terms involving sexual violation with various mercury- or vaccine-related objects.

In other words, people are behaving badly. Repulsively. Offensively. Stupidly.

I've been the object of some of these attacks. There's one recent one in particular that I've not blogged and won't link because to do so would violate a rule I have. If someone attacks me, personally, without addressing what I have to say in any rational way, I ignore them. Period. I've seen my name used in vain--because I am, after all, the goddess of...my home? my office? something--I've seen my name used in vain in comments, in blog posts, in Yahoo groups, and on other blogs. Generally, I steadfastly ignore them unless there's something tangible to address regarding facts--not me, but facts--and an argument worth pursuing. I limit my own references to others to their comments, particularly if they're public figures making assertions that require challenge.

Not everyone takes the "ignore them" tactic, and I'm not going to say that ignoring is absolutely the right way to go. To some of these attacks, people must respond. An obvious example would be the recent hilarious-but-scary AoA screed asserting that Sullivan is a female blogger and Paul Offit's wife, no less. Good Lord. It requires a response, that, because it's not a good idea to leave incorrect and likely actionable assertions about one's identity uncorrected...and unchallenged.

But the good old "You're a moron," "You're stupid," "You're ugly...fat...a bad parent...a child abuser because you vaccinate...a marginally qualified scientist...short...tall...angry...bitter...miserable...math-challenged...monkey-brained...mercury-poisoned...blind...shallow...whatever..." insults? Not worth a response. Lest there be any question about the intention of such folk, I've even seen a comment from one of them bragging that she'd gone out of her way to try to insult me. Sadly for her, I suppose, I did not take the bait. I know who I am. I know what my strengths and my weaknesses are, and I'm dead honest with myself about them. No nutcase in the Webosphere has any personal revelations for me.

I bring this up because of the latest push from the anti-vax fringe against a skeptic blogger who, rightfully enough, took issue with the SafeMinds campaign of anti-vax misinformation and effectively put the kibosh on any showing of the PSA in theaters. Instead of taking up anything the blogger said about the facts, this particular fringe group--known for their repulsive, offensive, and crass behaviors--decided instead to mock her personally, using her infant, no less, to do so. The venue they chose for their public mockery now has more than 100 comments, most wishing this blogger all manner of ill, raining epithets on her, and providing nothing in the way of counter commentary to the factual assertions the blogger originally made in her post about the SafeMinds campaign.

Why would they? They've got nothing to use for that. So, they resort to childish, playground tactics, and their cultish minions show up for the party.

And while I continue to urge ignoring these fringe groups that thrive on a hot fuel of paranoia, personal attacks, anger, and hate, I can't say that ignoring them is the only way to go. Indeed, were my children to become a target, they'd learn the true meaning of hot.

So...that leads me to my question. Have you been the target of an online attack? If so, what did you do, and do you think you'd do the same again?

All he wants for Christmas

...is an iPhone (!) among other things.