Autism: Temple Grandin and belonging

This week, TH watched the Temple Grandin biopic as part of our homeschool. He stayed rapt the entire time, and when it was finished--it ends just after she stands up at a conference and explains autism from an autistic perspective to a shocked audience--I asked TH, "So, what did you think about that?"

His response? "Duh."

I took that to mean, "Well, of course that's how I feel."

And we had, right there, created a Temple Grandin fan. I think he related strongly to much of what the movie showed. In one belatedly inspired moment, I thought to ask him, "Did you see how she doesn't like to be hugged? Is that how you feel about hugs?" And he responded in the affirmative--he doesn't really like hugs.

Really, after 8 years with this child, that was news to me. I knew that he didn't give hugs...when family members try to hug him, he leans in but doesn't lift his arms or really even touch them if he can help it. But I didn't realize that this behavior was really part of an active dislike of it. And the thing is, he hugs me, but I think it's more of an impulsive squeezing that's not a lot different from his other self-reg behaviors. I just happen to be a willing target.

So when I learned about a talk Temple Grandin had recently given at a TED conference, I actually had the whole family gather around my computer to watch her speak. The remarkable thing here is that they all watched, including Little, the three-year-old. Of course, his contributions mostly consisted of "Horses! Look! Horses!" There's one point in the talk where Grandin flashes a screen with a small "test" of how autistic people view the world. I'll leave it to you to watch and discover, but let's just say that some of us saw the details first (that would be me), some of us the big picture (that would be the Viking), and some of us claimed both at once (Dubya). TH was not sure.

Grandin also discusses different kinds of autistic thinkers, listing visual thinkers, pattern thinkers, and verbal thinkers. This observation precipitated a fairly lively family discussion about which of us would fall into which of these classifications. TH was the most excited, and I could tell he felt like he'd found one of the leaders of his tribe, someone who could articulate to some extent what goes on inside of him all the time. And he loved it.

The big surprise of the evening, especially in light of our upcoming neuropsych evaluation for Dubya after being referred for an ASD workup, was when Grandin showed a picture that a nine-year-old autistic child had drawn (see above). She noted the clear ability to depict perspective in the work and observed that it would be unusual for a non-autistic nine-year-old to have mastered visual perspective in this way, but more common for a visually oriented autistic child.

So, I give you as Exhibit A in the "Let's Figure out Dubya" saga this couch (and TV) and remind us all that Dubya drew this couch at age 7 years, 3 months. This couch has been the subject of much discussion and awe around our house. Seriously. We just can't get over this article of furniture (the stick figure is one of his iconic representations--he can actually draw people, too):

There's no doubt that this child is a deeply visual thinker. You can practically sit on that sofa, it's so three dimensional. I'm excited to see what will come of this clearly unusual capacity of his. And isn't it odd that an autistic middle-aged woman from an old-money Boston family who's an animal husbandry researcher in Colorado would help us learn more about our children--and inspire them--in this way?

Autism and environmental chemicals: a call for caution

Pardon me for a moment while I get a bit sciency on you. In a former life, I was a scientist who conducted research in the field of endocrine-disrupting compounds. We focused on compounds that accumulate in body fat. The list of these compounds is long...almost endless...and many of these chemicals occur in what we consume, wear, sit on, wash with, and eat from.

The term "endocrine disruptor" doesn't even encompass the physiological systems that some of these compounds affect, and one system that interacts and overlaps with the endocrine system--the two cannot be separated, frankly, and I dare anyone teaching physiology to try--is the neurological system. Our neurology and our endocrinology are integrated, and compounds that influence or disrupt one often will do the same to the other.

It all started with what we used to call environmental estrogens. Then, it expanded as we realized that the effects of these compounds weren't always estrogenic--some were anti-estrogenic, anti-androgenic, androgenic, thyroid inhibiting, thyroid boosting, adrenal affecting, and, yes, neuroeffective. While my focus was the influence of these compounds during embryonic development on sex development--gonadal development and penile development, specifically--there are hundreds of other endpoints that these chemicals can affect.

The key factor that these compounds--and pretty much any chemical that has an influence on a developing organism--share is that they may seem to have little in the way of negative effects on an adult, but they can have permanent disruptive effects if the exposure is embryonic. That makes sense if you think about alcohol--ethanol. You can go out and get kneewalking drunk and suffer the acute effects the next day, but that single episode of exposure likely won't do you lasting harm. But do that to a fetus, and the processes in motion at the time of exposure may be disrupted in ways that do not allow recovery.

Another feature of the chemicals is that the doses required to cause an effect in an adult organism can be many, many orders of magnitude greater than the doses that disrupt normal development. In my research models, it would take as little as a drop in a trillion drops of some compounds simply to shift the sex development of the embryo from male to female. One. Drop. In. A. Trillion.

For several years now, I've had these compounds on my mind as I consider human neuroendocrine development and my own scientific work. It's hard to formulate any firm hypotheses while the jury remains out on whether or not autism rates are genuinely on the increase because of a real increase in autism or whether or not the increase is the result of better diagnostic criteria and recognition. Until that question is decided, it will be difficult to identify any real correlation that would lead to a hypothesis of causation of any specific compound.

And as anyone in endocrine-disruption research will tell you, a single compound can be difficult to tease out of the thousands to which we're exposed every day. However, there are some prime candidates for human exposure and developmental disruption. These include phthalates (used to soften plastic toys), bisphenol A (BPA), PBDEs (polybrominated diphenyl ethers, otherwise known as flame retardants), and PCBs (polychlorinated biphenyls). These have all been identified as having endocrine-disruption capabilities. But results vary about which tissues they effect, what the effects are, what doses have these effects, what the timing of the dose is to have an effect, and more. The PCBs alone constitute a class of hundreds of separate chemicals. In other words, endocrine-disruption research is extraordinarily complex.

The few solid human-based studies have identified some of these at high levels in women--in breast milk, in particular--and also have identified them in umbilical cord blood of infants, meaning that they passed from mother to infant. So, yes, we're exposed. And for most of these, there is a great attraction to fat, which is mobilized at some of the worst times for exposure for children, as when we breastfeed.

Thus, it comes as no surprise to me that mainstream science is paying attention to this potential link between these exposures and autism. A handful of chemicals--not of the kind we're passively exposed to but of the kind we take therapeutically--have already been linked to autism. These include valproic acid, which also is an endocrine disruptor.

What we need to be careful about is talking about any links as established before the work has even been done. Nicholas Kristof in The New York Times tries to make this argument, but I'd call it a big fail from the get-go, as the headline itself is a screaming warning of "Do Toxins Cause Autism"? Aren't we just now trying to recover from the leading headlines relating vaccines to autism?

Kristof states, and he's right, that "these are difficult issues for journalists to write about...Evidence is technical, fragmentary, and conflicting, and there's a danger of sensationalizing risks." It's quite true. The studies of the effects of these compounds in humans are mindboggingly complicated, with endpoints that may be under the influence of a host of confounding factors. And once again, we can't hypothesize an influence of any environmental factor as being an actor in the rise in autism rates unless we've established that the rise is genuinely an autism increase, rather than an increase in diagnostic accuracy. And the jury is still very much out on that, although most evidence points to the latter explanation as valid.

Where does that leave us? I advocate for simply doing the best we can to remove these compounds from the environment or at least to stop contributing them. Whether they are a factor in autism or not, they're patently not safe for developing vertebrates, and we should be addressing that. Period.

And as someone who has seen the power of these chemicals to alter vertebrate development, I can only tell you what I do now. I do not use cosmetics, and I do not use shampoos or soaps on my children that contain phthalates, tea tree oil, or lavender oil. We do not use plastics with bisphenol A. I am careful about my purchases of fish oils and other fat-related items, checking to see if the persistent organic pollutants have been removed. I almost never microwave in plastic.

That said, I have to note that after all of my work with endocrine-disrupting compounds, including the study of congenital urological malformations in boys, I have two children who have...urological malformations and at least one child who has autism. The thing is, I can't determine whether these outcomes are a result of genetics--the urological problems run in the family, and I can see clearly where my children get some of their spectrum-associated manifestations--or whether they're the result of what I, the mother, have been exposed to simply through living in modern times and through my laboratory work. We already know genetics contributes strongly to autism. The question is, What else, if anything, does?

And that's not an easy question to answer--if it can be answered at all. Certainly, there won't be an answer that a single, sensational headline can encapsulate.

Autism: And the more things we need to change

There's a phrase that I sometimes get sick of hearing. If someone says it to me too much, I start to resent them. I resent them because they seem weak and weakly repetitive. Or I resent them because they've got nothing to be sorry about and they're just being irrational. Or, I resent them because they're sorry because I--to them--am an object of pity.

Obviously, there's no way a person with this much resentment could be pitiful, right?

I understand that "I'm sorry" is important, and I say it when...I'm sorry. When I've made a mistake and I need to apologize for it. But I try to reserve saying it in "pity" situations unless someone tells me that someone they know has died.

The "I'm sorry" phrase makes me particularly prickly when I get it in response to the information that my son has autism. My initial, mental reaction to the "I'm sorry" is "Why? Why would anyone be sorry that I have this beautiful child in my life, whom I love with all of my heart and soul? Why?" It's hard to get beyond that response and say anything in a measured way. I usually end up being too blunt, "There's nothing to be sorry about. He's a great kid." I have kind of a problem with brusqueness. I'm sorry.

But you can't blame people for their pity. After all, for many people, their sole exposure to autism is Dustin Hoffman. Or worse, Jenny McCarthy ranting and raving about it, about her poisoned indigo child, making autism sound like a black cancer that must be excised instead of a neurodevelopmental manifestation of a child or a grown human being. With that kind of background--thanks, news media and "popular" culture!--how are people supposed to feel anything but pity?

I think this is why books like Gravity Pulls You In and movies like the Temple Grandin biopic are so important. If autism has a prevalence of 1 in 100, then the world is full of autistic people. The more people who live with autism can say about the reality--good and bad--of the experience--and please, no endless ranting, no talk of poisons--the better people will understand that for many of us parents, at least, pity and an "I'm sorry" aren't necessary unless we specifically ask for it. Maybe the response will someday be instead, "Have you seen that Temple Grandin movie? It really opened my eyes" or something along the lines of "Tell me more, I'm interested to know about it."

Anything, anything but pity. I'm sorry, but pity's best taken in very tiny doses at a few carefully timed pity parties of one's own devising. Overdose side effects include turning into a big whiner or coming across as an angry, screaming hate-banshee. And that's not how we want people perceiving life with autism, either, now is it?

Autism: The more things change...

TH started lining up toys and nuts and other objects when he was quite young, around age one or so. These days, many people might recognize that as a sign of autism. Back then, we just thought he was...orderly? What were we thinking? This child is chaos personified.

Today is a bit of a snow day here. It hardly ever snows, so everyone--including me--is excited and having a hard time focusing. We're supposed to be homeschooling, but at one point, TH vanished upstairs to his room. I tracked him down there and found this construction:

The parrot is my favorite.

In the seven years since TH was a nascent toddler, he's changed a lot. He's bigger--an 80-pound eight-year-old--taller (4 feet, 9 inches), bigger footed (size 6 men's), and even more fun and funnier than ever. He can read. He can ride a bike, a long, hard-fought battle that he won after much determination.

But some things haven't changed. The other day, he found an acorn that wasn't like any of the other acorns around the oak tree. In fact, it probably came from some other kind of oak tree--maybe some indecisive squirrel dropped it there. TH was so taken with the acorn--acorns are easily his earliest obsession--that he kept it and named it Edwin. On the way home from that walk, I heard him having what sounded like a conversation in the back of the van. On being queried, he responded that he was having a chat with Edwin. The acorn.

Edwin now sits on the kitchen windowsill, near three ripening tomatoes. He's there, TH tells me, so that the tomatoes can keep him company. "Plants all communicate in the same way," he elaborated, "and they speak each other's language." Indeed, they do. But how does he know that?

And there we are. In spite of his promising developments--he's always developed, just not at the same time or pace as "neurotypical" children--TH still holds on to some of the things that make him what he is at his very core. Among many other continued behaviors, we've got the Toy Corps in front of the castle and Edwin the Acorn to remind us of that.

The DH Lawrence Homeschool Acid Test

I realized recently that, while I chose a ready-made curriculum in part out of sheer laziness, I'm glad I did. While we adjust it to our needs, skipping this, elaborating that, Google imaging here, breaking out the atlas there, for much of what we do, I have a "they" to refer to, rather than an "I."

As in, "Let's look at what 'they' want us to do today." "Looks like 'they' are wanting you to complete these two pages." "I think that here, 'they' could have used a clearer example."

The "theyness" that a curriculum not of my making offers allows some distance between me--the sole teacher here--and him, the student. Thus, much of what we do doesn't arise from something of my devising, and I think it helps us continue to get along as we work together to complete what "they're" asking us to do.

That said, today and every day, we do wander off "their" course demands. This is, after all, homeschool. Our literal wanderings this fine, cold morning took us to a local hike-and-bike trail where TH wanted to look for fossils. It's limestone central around here, so fossils are as abundant as hippies used to be.

As we walked, TH went off on one of his typical Beat poet riffs, this one about snakes. He was doing such a good job and as it was about snakes, I immediately thought of one of my favorite snake-related literary offerings, the D.H. Lawrence poem "Snake." I like it so much, I've even blogged it here before. Thanks to the gods of modern technology, I was able to search for this almost 90-year-old poem and turn it up on my Blackberry as we enjoyed the great outdoors.

Thus, we proceeded on our cold walk, crunching along the path through moss-hung live oaks, as I read a favorite poem about snakes and society and the struggle of nature vs nurture, and my eight-year-old listened to every single word. We talked about it for awhile afterwards, and he was even able to tell me times that he'd felt a similar struggle between the "voices" and his native instincts. Naturally, one of those occasions involved a shark. These days, it's almost always about a shark.

TH found Lawrence's words so inspiring that he then regaled me with a free-verse poem he invented on the spot about hot springs and acid and rescuing a fish. I felt like I'd just walked into a poetry slam. There are times when a tendency to non-sequitur and echolalia can emerge as music.

Poetry slam over, we collected some fossils, got in the car, and returned to "their" regularly scheduled programming. And I felt honored still more to be able to spend these times with my son.

Two on the autism spectrum? Neuropsych eval

I'll begin this by saying that some people think labels are BS, and some people don't. I fall into the latter category. It's not that I adhere slavishly to the parameters that a label implies, but they give me and schools and health professionals a good working starting point. If you haven't lived the special needs life, it may be that the benefit of labels escapes you. Blessings be upon you, then.

At the recommendation of two professionals, we've made an appointment for Dubya to have a neuropsych evaluation. We've gone through several permutations of ideas or labels--yes, labels--for what might best describe his issues, which are multitudinous. But one thing that has become more and more manifest to us and to the therapist he's been seeing is that he's a pretty clear fit for diagnosis with what is currently called Asperger's syndrome. We've come so far since TH's 2005 diagnosis that I simply IM'd this information to the Viking, and then we had a lively exchange about what we might have for dinner.

It's complicated, as always, with Dubya. A couple of years ago (so long ago, in fact, that I was still using truly dumb nom d'blogs for my children), I thought he might have Asperger's. He had several of the signs, including an unusual unifocal interest (ancient Egypt), odd, flat prosody, flat affect, extraordinary sensory defensiveness, avoidance of eye contact, and excruciating social shyness.

But he lacked the clear motor deficits of his older brother. And he passed what had become for me one of the key criteria for whether or not autism or any disorder has a significant affect: When I walked into Dubya's classrooms, children did not immediately and boldly approach me to "tell" on him or complain about something he'd done to them. I never once walked into one of TH's classrooms without having this experience. Given that I volunteered in TH's kindergarten class (essentially as his personal aide) every day, that was a daily shot to the heart for me. Dubya's peer interactions didn't bring that kind of pain.

And then, as his pediatrician noted, he exhibited the Tourette's trifecta of tics (motor and vocal), ADHD, and OCD behaviors. He has, in fact, been diagnosed with both ADHD and OCD, as well. His OCD manifestations continue to be debilitating for him, interfering with every single activity and every minute of his day. His ADHD behaviors are also a daily obstacle for him, and he finds his inattention and impulse-control issues get him "in trouble" at school several times a day.

We used to think of Dubya as the "typical" child because he was more recognizably so than TH. But he always had the sensory defensiveness--from the age of 18 months, our insistence that he wear a coat in freezing weather has precipitated huge, emotional explosions. Just last week, he sat down on the playground and refused to play for the entire recess period because "they" made him put a coat on. And he always had the trouble with eye contact. And foods. And being hugged--he hates to be hugged, refuses to cuddle, doesn't like to be touched at all, but is perfectly willing to crash into anyone nearby whom he loves.

Once again, in retrospect, we can see a slow accumulation of signs that Dubya has something pervasive. His lack of friends at school--he has one friend, another crasher, after being in this cohort for three years--and some of the things he's suddenly started relating about his interactions on the playground and in the classroom have started to set off huge alarms for me. They're things I heard about TH, but when TH was much younger.

Can there be this kind of delay?

Apparently, yes, there can. Kids with Asperger's often aren't diagnosed until Dubya's age and beyond. The deficits, especially the social deficits, become more noticeable as age increases. Why didn't we notice it before? Well, I guess we did, since I was questioning this when he had just turned five.

But here's what I really think. I think TH's autism is deeper. TH, as I've often noted here, isn't just a straight up Aspie, "little professor" type. His stereotypies and self-reg behaviors are what I think many people would consider to be more "classically" autistic. His social deficits were clear from his toddlerhood. His echolalia has been with him since he was 18 months old.

Dubya is truly a little professor. Pedantic language, total self absorption, monologuing, a distinct unawareness of especially visual social cues around him, an inability to determine if his interlocutor is paying attention or remotely interested. Low eye contact. Sensory defensiveness. Flapping. Emotional breakdowns. Obsessive-compulsiveness. Inattention in many situations, especially those involving other people, but an almost preternatural ability to focus for hours on his own specific interests. An extraordinary vocabulary and a formal way of engaging in conversation that reminds me a lot of his 78-year-old grandfather, rather than of a seven-year-old boy.

In other words, I think that this whole time, TH has been what would currently be defined as "high-functioning autism" (I've always considered him to be a mix of "classic" autism and "Aspie"--further argument, probably for just making the whole damned thing "autism"), and Dubya is the Aspie. In fact, when I broke out one of my Asperger's books and read the case histories described therein (as my Swedish clients would say), I noted two things: (1) Most of these cases had been diagnosed when the child was age 8 or older, and (2) the behaviors described fit Dubya to a "T" but TH's manifestations were far more extreme than those described for these Aspie kids.

Why does it matter? Well, for one thing, my approach to a child whose inattention or impulse control arises from autism would be different from my approach to a child whose related issues arose from ADHD. Ditto my approach to a child with autism vs. one who has OCD. TH has inattention, impulse control, and OCD manifestations, but our management of this for him is very different from what we do with Dubya. Perhaps we need to change that.

The neuropsych evaluation may tell us more. I'm hoping that it's refined enough to tease out all these threads that weave together the complex fabric that is Dubya.

And it all leaves me with one lingering concern. We thought Dubya would not have deficits like this. He seemed to be on a fairly typical trajectory in some ways, especially relative to our only comparator, TH. Now, we note the same thing about Little--the one who early on seemed to have more deficits than either brother. What secrets does his future hold? What will we see when he's turning 7 or 8 years old?

I know we can't answer that and that worrying does nothing. And I know that while you're worrying about one thing, there's something else out there, as-yet-unseen that will ambush you down the road--or pleasantly surprise you. This parenting thing is one big, impenetrable fog, is it not? I may need a neuropsych evaluation before it's all over.

Homeschooling: Can't we all just get along?

Apparently not.

From a recent discussion thread, I have learned the following, paraphrased: "Dem" homeschoolers are extremist liberals. They don't care about other homeschoolers or regulation. "Dem" homeschoolers flat out declare that they don't care about other people's children. Their only interest is that their child gets into college and that they get a free computer.

The poster finds this attitude totally disgusting.

I return the sentiment even as my concern about the capacity of the next generation to engage in analytical thinking deepens.

And free computers? Where can I get my hands on one of those?!? I, after all, probably would fall into this person's category of one of those "Dem" homeschooler types, although on a good day, I'm a liberal Quaker. It appears to be time for me to declare, "flat out," that I don't care about other people's children and that all I care about is that free computer. Do you hear me, parents? I do not care about your children. Please send a computer. Oh, and a printer, if you've got one because mine currently is literally held together by Scotch tape.

At what age does autism manifest?

It seems like such a straightforward question. Everyone talks about the "signs" as though they were writ large on the face of every person with autism. Motor deficits. Eye contact lacking. Low arousal. High arousal. Few closures of circles of communication. Splinter skills. Echolalia. Stereotyped behaviors. Communication problems. Social skills deficits.

You'd think with this list of seemingly clear manifestations, we'd all know exactly when it starts, pinpoint it with clarity, diagnose it as one would anything considered pathognomonic for a disorder. But perhaps the expression of autism as a continuum, rather than a clear disorder, muddies these waters thoroughly. Perhaps because we can't even identify these signs until a child misses certain milestones or hits some and misses others, autism isn't so much a disorder as a series of hits and misses that, in the aggregate, can sometimes add up to...something on an ill-defined, hazy spectrum with blurred boundaries. Perhaps.

And we know that there are parents out there who believe in their heart of hearts that their child developed with complete normalcy until a certain time--one year, 18 months, two years--and then they witnessed their child's personality change utterly. Still other parents maintain that in hindsight, they can see that the signs of autism were there from the beginning, even at birth.

In what appears to be a quite thorough, longitudinal study from the University of California-Davis, the findings indicate that on average, signs that we recognize as indicators of autism don't show up before six months and come on quite gradually--no sudden shifts overnight. The study tracked for five years 25 children who were at high risk for autism because of a family history and 25 other children at low risk with no family history and normal-length gestation. Children underwent close evaluation at 6, 12, 18, 24, and 36 months for social development, with researchers applying a number of standard autism assessment tools without knowing which children were in which group.

The results suggest that in the first six months, the two groups of children tracked one another, but between six and 12 months, their behaviors began to diverge. The children who were later diagnosed with autism starting showing some of the characteristic inward-turning behaviors and declines in social communication, while the non-autistic children continued on their social development trajectory.

These findings hit home for me for two reasons. First, I think that TH still showed some evidence of his autism before age six months, but not in ways that had to do with social interaction. Rather, his trouble breastfeeding and motor delays might today be flags of a deeper red for me.

Second, our youngest child, Little Da, followed exactly the trajectory this study describes for the high-risk group up to about age two-and-a-half, almost to the age limit of the children in this study. He would have been classified into the high-risk group, having an older autistic brother. My mother, I think, was the one who was most aware--and most worried--about the change. She had kept him for a few days when he was a several months old, and at the time, he was a reasonably interactive, cheerful baby. He'd already manifested motor delays and proved incapable of breastfeeding, but I'd been watching him closely for social-related signs. Right at about 10 months to one year, he shut down, shut us out, a change that was most clear to my mother, who did not see him every day. Except on occasions of prolonged effort on our part, it was like he'd decided that it was too hard or too scary or too overwhelming or all of the above to try to engage and interact. By about 13 or 14 months, he was gone, turned inward and away from all of us.

When he was about 10 months, we put him into occupational therapy for motor delays, and by the time he was 16 months, he was in speech therapy, having undergone a lengthy evaluation with two very nice young speech therapists. During the entire evaluation, Little did not once acknowledge their presence, not with a smile or an interaction of any kind. It was worrisome for me to watch--these signs were so much more severe than anything we'd seen with TH, whose biggest red flags--in retrospect--were flapping, spinning, echolalia, and lining up toys.

And then, after two years of therapy, I can say with what I think is near surety that Little does not meet the criteria for autism. In fact, with all the social skills practice and therapy that child had from age 10 months, he turns out to be the most articulate and interactive of our children, by far. Just last week, I watched him stand up in front of his class and sing a song. I almost dropped onto the floor in an irrecoverable state of syncope at the sight, and I don't see either of my other children doing anything like that for a long, long time.

What does it all mean? Are parents who are sure their children changed overnight simply mistaken? Did they miss early signs, as we clearly did with TH? Retrospective review of video of some of these children seems to indicate as much. What about those parents who are convinced their child showed signs from birth? That may still be the case, as this study addressed social behaviors, rather than issues of motor performance or breastfeeding.

And what about our youngest son? Did we "cure" him with these very early interventions? I can't call anything a "cure" or a "recovery" because I never saw his issues as a disease. We saw some deficits, and we seem to have been enormously successful in addressing them. I think that in part, his forced daily socialization with his brothers may also have had an influence. And I think that without these various and prolonged interventions, his set of obstacles to overcome would today be mountains compared to the molehills he seems to face instead.

In the end, it's clear that we have many questions to address about autism and its prognosis, about why therapy seems to be so effective in some children but less so in others. About parental perception. About closer monitoring in the earliest months and years and what should be done when red flags fly. And, as always, there's the question of whether or not we can address any of it without starting another conflagration in the autism wars in which the fires of fear and emotion and anger subsume reason.

Oxytocin and autism

Many science bloggers have tackled the oxytocin story, including yours truly over at my Complete Idiot's Guide to Biology blog. While the results of the study are interesting, I had two not-so-positive responses to the study. The first has to do with reality, and the second has to do with scientific interpretation.

My reality issue has to do with the way the study authors and the accompanying news release talk about autism. The abstract, for example, offers up this gem: "Individuals with high-functioning autism or with Asperger syndrome cannot understand or engage in social situations despite preserved intellectual abilities."

Pause. Deep breath. Like Temple Grandin's description of thoughts as video, my mind flashed on a million little visual examples of TH and other autistic children I know engaging in, and yea verily, even understanding social situations. It's not that they don't do it. It's that sometimes, they're not very good at it. And there is a difference.

The news release delivers a few other precious offerings. Here's one quote related to the above, both in terminology and error: "...patients retain normal intellectual and linguistic skills but are unable to engage spontaneously in social situations. Thus, during a conversation, these patients turn their heads and avoid eye contact with other people." It's a pity that even the people who are addressing interesting hypotheses underlying autism exhibit so little real understanding of it. As anyone who knows a person with autism can attest, that lack of eye contact is often exactly because the autistic person is engaging socially. Looking away clears out noisy visual inputs and allows conversational engagement. Geez, people.

At the close of the release, there's this, using that word that can make some of us, at least, shudder--the D-word: "They will in particular be studying the long-term effects of oxytocin on improving the everyday living disorders of autistic patients, (sic) and its efficacy at an early stage of the disease." There's so much about the connotation associated with that word that just doesn't seem to fit my personal experience with autism.

Finally, the case-control study--which addressed a very small group of individuals with variable diagnoses (e.g., HFA vs. Asperger's)--leaves me with a large, lingering question that requires more investigation, as the authors seem to acknowledge: Was the improvement that the autistic people presented in social interaction after whiffing oxytocin the result of reduced anxiety (oxytocin is known for this soothing effect) or some other, more direct effect on social ability? The authors describe the hormone as improving social learning. My vote right now is for reduced anxiety. From what I've seen and read, so much of what drives the social awkwardness in autism is attributable to anxiety.

There are other issues, of course. The whiff of oxytocin yields a transient, quickly fading effect. And oxytocin has been shown to improve trust in people to the extent that they continue to trust in the face of betrayal. Given that autistic people may already have some difficulty divining the ill-intended from the sincere...what "side effects" might oxytocin have here?

Homeschool and autism: K12 curriculum review

As our homeschool choice, we selected the K12 curriculum (impossible to google that, as all schools around the country make reference to K12). I have to confess that I did not spend weeks doing a ton of research into different programs before choosing this one. We have a family friend who also homeschools, and she did spend two months assessing curricula before homing in on K12. TH and I went to her house and reviewed the extensive materials they sent for grade 4.

Then I came home, reviewed their Website and this excellent resource of homeschool curricula reviews. After also discovering that K12 is the curriculum that many states use for online schooling, I was sold. If we move to a different state, which is currently in the works, and that state's homeschool requirements aren't quite as lax as in Texas (where you don't need documentation of any kind even to withdraw your child from school), we'll have a pile of evidence that we've maintained their own state-used curriculum.

That wasn't my only reason for choosing it. K12 also has an amazing online interface that sets up lesson plans for you (you've got plenty of flexibility to follow or not follow them). It tracks your progress on a 180-day calendar (or you can adjust as you'd like). This ability to go online and check our day's plan is especially important to TH, who like many children with autism, absolutely needs a schedule in front of him every day to know what's going to happen. Now, every morning when we get up and get started, he asks to look at the schedule to see how the day will unfold. And as we progress through the different elements, he's glad to see us fill in the "completed" squares online, marching through the day's plan.

Since we started using K12 in mid-January, I've found many other reasons I like it. First of all, it's a classic education curriculum that ties together many elements across subjects. For example, when we're talking about people and perspective--a useful unit for a child like TH--we also encounter exercises in perspective in our grammar and usage assignments. The spelling words are more challenging--and thus, more interesting for TH--than anything he'd had in school so far. In fact, he is now very much into spelling and sweats the final unit assessment, worrying over every word. Am I glad to see my son angsting over a spelling test? Yes, I am. It demonstrates awareness and a desire to do his best. And he is doing quite well as a result.

Another place he's shining through unexpectedly is English grammar and mechanics. For some reason, he's suddenly become an editing enthusiast, tackling his work on commas and quotation marks and capitalization with enormous gusto. And again, doing quite well at it. Will he be an editor like his mother? I'd encourage it because I love my job. And for a visual person with an eye for detail who might do best working alone, it might be the perfect employment for him, as it is for me. Slow down, people. He's only eight years old, for God's sake.

The last thing I like about this curriculum is its maturity and its focus on science and history across the subjects. We're doing things in science that I see in college-level biology textbooks (example: yesterday, we covered the concept of symbiosis and three types of symbiosis--mutualism, commensalism, and parasitism; TH loves this stuff). We do things in reading that strike me as quite mature in content and analysis.

And the developers of this curriculum seem to have known their audience. One reason I went with K12 was because it is secular. I imagine that many secular homeschooling families out there have a strong affinity for the sciences and nature. This curriculum appeals to that affinity, incorporating science and nature topics even into their math, reading, and language mechanics assignments. This cross-pollination of topics is perfect for TH, whose unifocal interest is science. One of our first punctuation assignments, in fact, was a series of sentences describing photosynthesis, to which TH had to apply the correct punctuation. Of course, he was enthusiastic and on board because--hey, it was all about plants. Yesterday's lesson on quotation marks was all about Benjamin Franklin, which had us both on board.

Finally, this is homeschool. So whenever we feel like it, we wander off curriculum and take a side road to something related. Yesterday, for example, while analyzing symbolism in Roll of Thunder, Hear My Cry, we had a discussion about what standing at a crossroads symbolizes. I searched for Robert Frost's poem "The Road Not Taken" and found this image to illustrate it, and we had a lengthy discussion about what it means to be at a crossroads, to make choices. Then, we returned to our regularly scheduled Roll of Thunder analysis.

History and science rolled into mechanics, reading, and writing. Mature science, reading, and spelling. A classical approach that appeals to me, with a thematic element that keeps TH engaged. The flexibility to wander off topic, to diverge, to explore when we feel like it. And the online scheduling that makes what is to me the most difficult part of teaching--writing out the lesson plan (I write them in my head just fine, but...ugh on the actual writing part)--a snap and helps TH track his progress. We've also added on history, art, and Spanish and keep plenty busy. Overall, we'd give this fourth-grade K12 curriculum a big thumbs up.

Parents seek autism diagnosis to avoid blaming themselves?

A psychiatrist has written a letter in response to Grinker's opinion piece in the The New York Times on the proposed plan to subsume Asperger's et al. into a broad autism diagnosis. I've got a problem with what he says, and I think many other parents might, too.

Full disclosure: I have a deep distrust of all things related to psychology, including the DSM, considering it neither much of an art nor much of a science, and certainly dragging its feet behind our growing understanding of the physiology that underlies what they pathologize as "mental illness." Psychiatrists, as MDs, are great for prescribing the medications one needs, but as this letter illustrates, there is a wide, ahem, spectrum in the profession of practitioners whom one might consider to be good at what they do.

The doctor, one Alex Weintrob, first avers that in some cases, diagnosis of autism spectrum disorder or Asperger's should be delayed until late adolescence. Yes. He's proposed that we wait until after the prime years of neural plasticity, until after the prime years of solidifying and inculcating an ability to socialize, after enduring what is likely at least 12 years of difficulty socially and emotionally--then you get a diagnosis.

The assertion runs counter, of course, to everything we're learning now about autism spectrum disorders. That the earlier one can intervene, start therapies, the better the outcome. That with that early, remarkable plasticity of the human brain, we may have a window for rewiring that will help an individual struggling with self regulation and social interaction to forge new pathways, ease the noise in their brains. The suggestion itself offers nothing in the way of exactly how we'd go about identifying these specific cases in which a delay would be efficacious because--why? He doesn't explain.

Dr. Weintrob describes himself as having practiced child psychiatry for more than 40 years. Yes, that makes red flags go up for me. He's practiced child psychiatry as long as I've been alive. His formative years of training took place in the '60s. I think some of us can recall the fruits of psychiatric training in the '60s. Has Dr. Weintrob kept up with the literature throughout his career? Is he aware of the growing body of literature that confirms and re-confirms the significance of early intervention? I don't know because a brief letter to the editor is no place to spell that out, but his comments tend to illustrate an above-it-all (including above all that literature) attitude about diagnosis.

He goes on to say that he has found it "more fair and reasonable" to give the label "quirky" (anyone find that in the DSM? 'Cause I can't) to someone who "may need social training skills" rather than offering "a medical diagnosis." I think he miswrote because clearly, he doesn't mean that quirky kids need skills in social training, they need training in social skills.

You know what? I'm kind of tired of people assuming that a diagnosis on the "mild" end of the spectrum or Asperger's just means your kid is "quirky" or that you're the kind of parent who wants this label so you don't feel responsible for your child's behavior. Guess what? Cyndi Lauper? She's quirky. Shirley MacLaine? Really, really quirky. What my son does is not "quirky." He's not just an odd kid who likes weird things and acts funny. He's got autism, and the enormous load of anxiety about everything--structure, social interaction, people, new things--that goes with it. That's not quirky. Quirky doesn't carry with it a debilitating anxiety that leads to the self-regulatory behaviors, flapping, diving under furniture, and sheer terror about anything or anyone new that my son experiences every day. That's a lifelong problem that we have been helping him with since he was an infant.

Why does the good doctor prefer "quirky" sometimes? He says that he's aware that funding isn't available for the training in social skills he mentions, and that "some parents much prefer a diagnosis." But then he goes on to add--and this is the kicker--that parents often want a diagnosis because they "then feel less responsible for their child's difficulties."

This comment from a self-described pediatric psychiatrist who's been practicing for more than 40 years isn't wildly different from this one, posted over Jennifer Laviano's Website, offered up by one "Casey": "Asperger's is the new go-to diagnosis for kids who's (sic) social skills aren't the norm. And the trendy new disorder for parents who need a reason for their children's behavior other than 'They're just children!' Same thing happened in the 80's (sic) and 90's (sic) and thousands upon thousands of children were tossed on Ritalin so parents didn't have to blame themselves for their children's difficult behavior."

I know many, many autism parents, and not a single one of them fits these descriptions. So, yep. I'm weary of this kind of thing. I encounter it in real life and all over the Web. Why is it that my trying to help my son, to understand him and ameliorate the extreme anxiety that is the hallmark of his autism--and likely of many if not all children with autism--translates into some effort on my part to avoid "blaming myself" for my son's behavior? There's no one to blame unless one wants to shake one's fist against the gods of genetics and environment and neural constructs, a pointless and ineffectual shaking at best.

My son's diagnosis is not a "trend." His behavior is not our "fault." It's the result of his own specific neural constructs in interaction with the world around him and the anxiety that results from the confluence. The outcome is autism. Luckily for him, we're here to help him. And in part, that means continuing to try to educate the Dr. Weintrobs and Caseys of the world while protecting our son from them at the same time.

Homeschool wars: abortion vs Darwin

Someone posted on my recent observations about the autism wars (oh, be sure to read the Comment thread) that the engagements among the gaming community make the autism exchanges look like ladies' tea parties by comparison (they didn't use exactly that analogy, and of course, a ladies' tea party's got its own powerfully antagonistic and aggressive undercurrents coursing beneath all that china).

And I've posted recently, also, about my discoveries regarding the intense philosophies in the homeschool community: there is, it appears, an "us vs them" mentality in a segment of this community that pits them (in their minds, at least) as homeschoolers against the people who buy into the "institutional" school philosophy. In fact, just today, we had another hapless parent get reamed because she posted a question about needing to put her homeschooled child back into school and was wondering if anyone knew any good Catholic schools in the area. Oops. She got smacked down for that one, once again with the now weary analogy that posting such a question to a homeschool listserv was like asking a question about beef on a vegetarian board. Whatever we do, people, let's be sure to maintain our divisions as clearly as we can.

As someone new to all of this, and as someone who is homeschooling not out of a deeply held personal philosophy but because it's what's best for our son, I found these engagements surprising and off-putting. But the division lines run even deeper it seems, and almost anything can become fodder for disagreement. Is there nothing in our society that people can mention without opening some kind of chasm between sides? I'm guessing even a discussion about desserts could devolve into a shouting match these days. "You like chocolate?!? Are you INSANE? Do you KNOW WHAT THAT DOES TO YOUR LIVER?!?"

But this one was about abortion and Darwin, possibly two of the most divisive topics imaginable (poor Darwin). A strange coupling but one that I'm sure has arisen before, as divisions seem to run along the lines of "all people who are pro-choice also are atheist 'evolutionists' who are really 'pro-abortion' and biblical denialists and think Darwin (poor Darwin) is god" vs "pro-lifers." As anyone reading this who embraces truth would be able to acknowledge, it is possible to believe in the sanctity of life while being pro-choice and to believe in God while acknowledging the scientific validity of Darwin's extraordinarily thoughtful ideas regarding natural selection and evolution. If there's one thing I absolutely detest, it's the tendency to distill a bundle of ideas into a swill of assumed, stereotyped uniformity and label it with a buzzword that leaves no room for nuance, truth, or reality. The word "evolutionist" alone annoys me beyond description, but that's another post.

So it was that Someone in the homeschool community in our area saw fit to post an announcement to a "secular, general" homeschool listserv about a pro-life rally coming up soon. I read it. I thought to myself, "What on earth has this got to do with school, or homeschool?" and I deleted it. Not gonna be taking TH to any rally related to abortion any time soon. A couple of days later, Another Person who apparently reacted more strongly posted a protest, asserting that the announcement was not homeschool related and that it was overtly religious in nature and didn't belong on the list. Then, Someone Else responded back that they didn't see what the difference was between the posting about a pro-life rally and another recent posting announcing a "Darwin Day" event at a local science museum. After all, Someone Else asserted, Darwin's ideas run counter to their beliefs, yet they had to read that announcement about him (poor Darwin). Oh, the humanity.

I'd argue that it's more defensible to call a museum event celebrating the birthday of one of the greatest, most influential scientists who ever lived, one targeting children, something more relevant to school, to homeschool, than a pro-life rally targeting adults. But I didn't see the need to argue, and the disagreement that took place here left me baffled. My reaction is, Pick your battles, the big important ones, the ones in with a big stake. I can't see how an announcement about a pro-life rally on a local listserv to a group of local adults met the "I'm so offended I must take up my sword" criterion. Of course, I don't get the offense in asking about "institutional" schools when you're a homeschool parent facing that decision.

There is, after all, this thing called a "delete" button. I wish it were something we could all use a bit more often, like say, when you're clearly facing a battle that's not worth fighting because no one's gonna win, no one's mind is going to change. In fact, I can't think of a better use of a key on a keyboard than that the Del key. I use it all the time, and then I move on.

Unless we're talking about desserts. On that, I'll battle you to the bitter (chocolate) end.

Autism: That's no party to him

I knew it was coming. Right after I read the invitation, I knew that there'd be a reaction, a delayed one. And it came today.

A few days ago, TH received an invitation to his BFF's birthday party. An overnight with five other boys, going to a movie (the new Lightning Thief), coming back and spending the night in his friend's living room. Sounds like a blast, right? What eight-year-old or nine-year-old boy wouldn't want to do THAT on a Friday night?

Well, mine.

The negotiation started this afternoon. He came in to me from reading his book (our homeschool novel: Roll of Thunder, Hear My Cry) and said, "I'm afraid about tonight." Thus beganneth a lengthy exchange about his fears that extended as we got into the car, continued on as we ate a quick late lunch, stretched into our gift purchases at the bookstore, and essentially lasted through the car line, pick up of his brother and his brother's friend, pick up of his other brother, and arrival at BFF's house. I'd made a deal with him: If he'd go to the party, do the part where they play outside and go to the movie, and he still found that he didn't want to stay, he could call me, and I'd come get him. My hope is, of course, that the boy-bonding that happens after an afternoon of playing and seeing a movie like The Lightning Thief would be too tight for him to resist.

The problems that trigger the anxiety? He doesn't want to see a movie in a movie theater with "a lot of people who aren't (his) relatives." He's worried that people will get cranky in the nighttime about being sleepy or someone talking. He's worried about where he'll sleep. He's particularly worried because one of the five other children is a boy he's only met a couple of times (a quiet, shy child, truly). Overall, it's because it's all different. Not the same as home. As we arrived at BFF's house, he announced that he planned to hide instantly, telling me that "the best way to hide is to hide where everyone can see you but no one notices you." And indeed, he did immediately vanish when we got there.

As I pondered his advice, wondering if perhaps I could apply it to the next time I'm forced into social interaction, I hauled him and his various overnight accouterments out of the car. BFF's mom has a special needs child, and she understands TH very well. So, she got it immediately when I explained the situation to her. She'll read the signs and know when enough has been enough for him.

Will I get a call tonight that TH wants to come home? It's happened before, at about 10 pm. We'll see. But I hope he stays and learns a little bit about stepping out of his comfort zone of his own home and his own bed and his own family and his own relatives at movies and finds that when you can put away the fear, sometimes fun takes its place.

UPDATE: It's 10:40 pm. He's stayin'. In fact, he is "bouncing off of the walls" with the other boys. I guess the boy-bonding glue worked. Yay!

The autism wars

As many bloggers in Autismland (thanks, Kristina) must feel, there's an awful lot of division in our country, not unlike the explosive partisanship that holds the United States hostage right now. I feel it when I read comments from specific posters or see that they've commented. I feel a certain level of tension, knowing that the likelihood is something that will, at the very least, make me think, "Oh, hell no," if not offend me deeply. There's a distinct lack of courtesy that permeates interactions, again not unlike the building crassness and discourteous behavior that overshadows American politics.

Are these divisions merely a sign o' the times? What fuels the vitriol? Everyone's pissed off, everyone's angry. Sometimes, I step into it, too. Maybe I've had a bad day, and I cut loose online. Maybe the offense is so deep or the "facts" so wrong, and I'm so caffeinated, I mustmustmust respond. Perhaps that's everyone's reason: stress, economics, frustration, helplessness, crusading on behalf of (fill in the blank here; mine's "reason").

At the end of the day, though, when I assess myself, I am never proud or gleeful of these lapses. Instead, I find myself thinking about the parents and children and autistic adults out there in these trenches, fighting these wars. And I find myself feeling a suite of emotions that don't include anger.

They include pity and sympathy for parents whose children seemed to have been typical and seemed to have changed overnight. I wasn't there. I'm not going to argue about what happened. Whatever it is, these parents are mourning a loss. And I wish for them and their children some peace and peace of mind.

Wishing won't do it, though. And that leads me to gratitude for the autistic adults and the parents out there who fight for an infrastructure of understanding and supports for autistic people. For real change to happen, real passion and yea, verily, real fanaticism are necessary to pull the middle toward the change. These folks work tirelessly in a million different ways to change society's perspective and acceptance of autism to something more positive. On behalf of my children, I am deeply grateful.

And, I feel dismissive. Dismissive of little things, like who does what diets or who believes in labels (I do. I can't help it. I'm one of those scientific, analytical types who really really likes things to be at least somewhat tidily categorized. Dubya's situation, for example, is making me crazy. There are people who take this to an extreme and devote their lives to it: They're called taxonomists). I don't care who does which supplements, which diets, which behavioral therapies someone uses or doesn't use.

Finally, I feel anxiety. I worry about misinformation about Big Things as opposed to those little things, about children dying because of anti-vaccine propaganda, about the unknowns involved in injecting chelators or the long-term harm to the liver from diflucan prophylaxis, not to mention directional selection for resistant yeast strains. I feel anxiety when I read things that make me feel horrible for the children that their parents are so angry. I don't have less sympathy for the parents at all--but I feel deeply for all children who live with anger.

With this mix of feelings--sympathy for people who struggle and suffer, gratitude for people who fight on behalf of many, dismissiveness of these stupid little things that parents in particular seem to use as markers of division, and anxiety over the public health consequences of misinformation--I find myself confused on a daily basis about this broader autism community. Emotions are confusing things, sometimes difficult to pin down. And it can be hard to know which "side" is the right one. Perhaps the answer is simply that we come down on the side of support: support for autism acceptance, and support for one another.

Do I think that's gonna happen? Um, no. It would take a certain level of maturity that here in the United States, at least, seems to be dissipating apace. But, it's something I plan to keep in mind as I make my way around the blogosphere. I will try to remind myself of it on those days when the caffeine runs strong and the stress weighs me down, and I will fight my own struggles against quick temper and snarkiness and try to keep my comments keyed to courtesy, even as I continue to try to be just, honest, and factual. What about you?

He'll no longer have Asperger's

No, he's not "recovered." No, he's not "cured." All you need is his reaction yesterday to a beflustered swan at our local center-city lake. The swan puffed up, stretched his neck, and expanded his wings. It was beautiful and terrifying, and my son was only a foot away from the large, suddenly supersized bird. TH is incapable of staying away from animals like this, always compelled to get closer, even touch. This compulsion includes touching stinging insects, and we've treated more than a few bee stings around here.

As the swan expanded his size, TH emitted his unique squeaky squeal, threw up his hands, flapped vigorously, and somehow by doing so bemused the swan so much that the beautiful white waterfowl immediately shrank back to his normal appearance and settled himself. Perhaps he thought TH was also a large bird and felt better about the whole thing. But there was no question about what the flapping had something very very autistic about it.

Today, the Psychological Powers That Be have announced that TH's autism will officially no longer be called Asperger's. Based on arguments grounded in the scientific literature, they have concluded that the Asperger's diagnosis be subsumed into one long, rolling spectrum of autism.

On the one hand, it makes total sense to me. Some days, some moments, TH is one of those "high-functioning" autistic people you hear about, the ones who navigate the world with an apparent near-typical ability. Of course, the reality is that they've probably intellectualized the navigational charts and struggle and expend far more energy on mapping those paths than neurotypical people do. I can completely sympathize with this struggle, as I experience a similar expenditure to the point of exhaustion when I'm around people.

And at other moments, especially when TH really cuts loose with the self-reg behaviors--flapping, rocking, squealing, echolaling--he fits what some people would think of as a more "classic" autism. He does these things at home a lot, and they seem to signal supreme happiness. But he also does them in public in a way that signals something different: anxiety, trepidation, abject fear in some cases. Only three days ago, I had him with me while getting my hair cut. As I was checking out, TH carefully approached me, and the stylist noted the dinosaur book he clutched in his hand. "Is that a good book?" she asked. Suddenly, he was gone, having dived underneath a chair at one of the stations. He's large, the chair was small, and it did little to conceal him. I retrieved him and had him answer the question.

On the other hand, I'm gonna sort of miss the term. It's a quick shorthand with doctors and other relevant folk to let them know that TH can understand what they say and talk to them in a relatively functional way, but that he's also autistic. But TH won't miss it at all, although he's clearly gotten more comfortable saying it lately, trying it out as a rationale for some of his behaviors. "Oh, that's because I have Asperger's," he'll say. And I'll say, "Well, too bad. You still have to respond appropriately when someone asks you if the book you're holding is a good book." I have a zippy Irish temper, but that doesn't mean I get to go around unleashing it on unsuspecting strangers with impunity. (Took me awhile to fully incorporate that lesson, but there you go. We all have our learning curves).

In the aggregate, it makes sense. I've seen kids whose autism is deeper in most ways than TH's, yet they share many behaviors in common, many issues that match perfectly. TH's social deficits and extraordinary social anxiety may likely be the most difficult aspects of his autism, and they're problems he needs to conquer or at least control at appropriate moments, step by step. In fact, I plan on watching the Temple Grandin biopic with him so he can see what real bravery means. His attachment to schedules and home and his powerful reaction to even the smallest changes also will require a bit of conquering, some effort at greater flexibility so that he can navigate life with a bit of resilience. I hope.

We as his parents are lucky--and I know it--that he no longer has epic meltdowns that have no identifiable (to us) trigger, that he can now communicate with only the occasional interpolation of an explosive non-sequitur, that he can read, write (sort of), calculate. That he sleeps (almost) through the night. I know the struggles of other parents are far far worse, that the struggles of other autistic adults and children are far heavier burdens. And where TH is now may change for him, one way or the other, as he gets older.

But no matter what his age, he will be autistic. The swan experienced a true manifestation of that. And now, the new Diagnostic and Statistical Manual apparently will agree.

Speaking of brilliant autistics: Dirac

A few weeks ago, I finished reading a recent biography of Paul Dirac, a physicist and member of the pantheon that includes Einstein, Oppenheimer, Schroedinger, and Feynman. The book, called The Strangest Man: The Hidden Life of Paul Dirac, Mystic of the Atom, reminds me in some ways of Temple Grandin's story. They each in their own way had an idiosyncratic approach to sensing and reconstructing the world, and these sensibilities led to their ultimate success. What Temple Grandin is to cows, Dirac was to the atom. And, according to the author of this biography, Graham Farmelo, Dirac, like Grandin, was autistic.

I am not a fan of historical diagnosis without an abundance of evidence to back it up. In this case, the evidence seems pretty convincing. A few notable characteristics: He bought a coat and wore it for 50 years. He wore the same suit every day. When the woman who pursued him to marriage (there really is no other non-feminist way to put that, and without it, he never would have married) complained that he was not answering the questions she asked in her letters, he carefully produced tables of the questions to which he had failed to respond, adding a column in which he included his brief, to-the-point responses (e.g., "Do you miss me?" Answer column: "Sometimes.").

When people spoke to him, he often would not respond at all. Incapable of small talk, he would simply walk away after someone asked him a question they'd hoped would get him to speak. He was so literal that his inability to get even the smallest joke was a matter of hilarity in physics circles, and he preferred more than anything else to simply be alone, walking walking walking or at his desk in a quiet room, solving the conundrums of the cosmos. Once, giving a talk, he simply ended his lecture, and when a member of the audience said something to the effect of, "I have a question," he just stood there as minutes ticked by. Finally, the moderator indicated that a response was expected, and Dirac replied, "That wasn't a question."

In another well-known anecdote, Dirac was traveling on a ship with his friend, the physicist Werner Heisenberg, who was apparently a bit of a ladies' man and party animal. Heisenberg would spend the evenings cutting a rug with the pretty women on board, and Dirac was curious about it. "Why do you dance?" he asked Heisenberg. "When there are nice girls," Heisenberg replied, "it is a pleasure." Dirac, confused, then asked, "But, Heisenberg, how do you know beforehand that the girls are nice?"

Yet, he was unquestionably, preternaturally, incredibly, seemingly effortlessly brilliant, in part because his mind translated the world of physics geometrically, in ways that people with regular everyday minds simply did not see things. A Nobel prize in addition to his position in the physics pantheon demonstrates his stature, his level of celebrity in his day.

Add to this that he was a kind father with an anomalous love for things like Mickey Mouse and an obsession with hiking in the mountains. His modesty was almost as famous as his legendary literal mind. This man who suffered at the hands of a father whom the biography author asserts may also have been autistic left behind a legacy that includes the Dirac equation. But for autism parents, he--along with Temple Grandin--leaves us feeling a sense of hope that someday...maybe...there will go many autistic children of today. Perhaps not as physicists or even people who can commune with cows, but given a society that understands better, the right supports from the beginning, and a healthy fostering of their focus, a clear path to grow up to reach their own unique potential in their own idiosyncratic way.

Temple Grandin biopic review

As usual, we did it by halves, backwards. We never do anything the "normal" way around here. The Viking and I had just re-watched 1.5 episodes of "Rome" (as good as ever), our usual relaxation involving DVD sets, a grabbed hour or so, the couch, and for the Viking, vodka. When it was over, we felt that as it was Saturday night and not quite our bedtime, we'd channel surf. The Temple Grandin biopic was already DVR'd, but when we stumbled across it in progress on HBO, we left it there and watched.

And watched. And watched. And when it restarted from the beginning at the next time slot, we watched the first half, too. We stayed up until one thirty a.m. I'm usually not up at that hour unless someone's hurling.

Obviously, as autism parents, we were looking for things that reminded us of our son. And there were some. The lean-to she gives near the end as a "hug" is so very TH. Her ability to be more social after being "hugged" by her hugging machine. The way she feels the pulse--and literally the heartbeat--of nature in ways that non-autistic people never could. Her visual acuity. That loud, unmodulated, top-speed way of talking. And the way she burst out with whatever question was in her head, at top volume, without regard for typical social interactions or her audience. Very very TH.

But there were things about her, at least as this movie depicts her and also from what I've heard her say in interviews, that are very much not like our son. She has executive function of some sort, able to plan and execute large, complex projects, usually involving machines or architecture. TH, at least at this point, wouldn't be able to plan and build a shoebox from a shoebox. And she apparently has real fine motor skills, although one scene shows her running in an awkward, akimbo fashion that reminded me very much of our son. It may be that these differences, these distinctions, are just another illustration that if you've met one autistic person, you've met one autistic person. Or, perhaps, as is becoming more recognized, girls and women manifest autism in some different ways.

Her mother in the movie reminded me of me, but also of every other autism parent and parent I know. Passionate about her daughter's abilities, patient but anxious, refusing to give up on her child, insisting that her child reach full potential. Near the end of the movie, when Temple is speaking at an autism conference, she describes her mother using words that apparently reminded the Viking so much of me, he patted my foot--one of his key expressions of connection--and said, "Just like you, sweetie." Aw. Although I think Temple was essentially describing her mother as...um...not putting up with much.

More than anything, the mother, as played by Julia Ormond, treated her daughter with an honesty and insistence that reminded me of Temple Grandin's own observation: autistic or not, our children need to learn good behavior, good manners, the ability to set a clock and get up in the morning. Her mother, at least the way the movie portrays it, was one of the driving forces behind the bravery that helped Temple overcome the obstacles she encountered, and sometimes, autism seemed to be the least of these. The scene between the mother and the doctor who diagnoses Temple's autism is worth the price of HBO for a year. Bettelheim, anyone?

I'm making it sound like we spent this entire movie analyzing it from the perspective of living with autism. But we didn't. Yes, we did burst into laughter at some of the familiar things that cropped up, especially that lean-to hug, but primarily, we were mesmerized by this woman and her world--not the autism, but the cows. And the awful misogyny. And the way she worked her away around and through that wall of male bullsh!t--and in one scene, bull testicles--just as effectively as she imagined and designed the structures that worked cows around and through their bovine fear.

This is certainly the well-written, extraordinarily well-acted story of an autistic woman, one who continues to startle a world that has not quite come to grips with autism's sometime potential. But it's also the story of a woman whose autism gave her the persistence, the obsession, and the mind necessary to bore her way through the phalanx of resistance she encountered again and again, not because she was autistic, but because she was a woman. On any level, this movie is worth watching, and we'll be watching it again. I think that this time, though, we'll drop the in medias res approach and start at the beginning.

My last word on Wakefield

I know: Alert the media, right?

I've read a few comments around the blogosphere (oh, say, from Kim Stagliano) in which people excuse Wakefield's behavior on a few grounds. These excuses include:

--he's doing it for the children, so it's OK

--I have a child and he's doing it for the children and I think it's OK, so it's OK

--I have an autistic child and it's driving me nuts not having someone to blame and I think he's helping me with that, so it's OK.

--he's the only one who's doing it (for the children), so it's OK

--he's the only one doing anything to find out about the *real* cause of autism, so it's OK

--he's the only one who knows anything about the real cause of autism, so it's OK

--we ought to do whatever it takes to find out the cause of autism

--ad nauseam.

And here's all I've got left to say about it:

As the parent of a child with autism, I believe that the primary value of identifying etiologies of autism lies in prevention (possibly, and I'm not arguing for any benefits from this) or in therapeutic targets (more likely). And as a scientist, I can say that we don't get to that value unless we practice science ethically and openly. When unethical practices lead us away from fruitful investigation--as Wakefield's red herrings, magnified by the news media's hysteria, have done--they lead us away from being able to learn more about autism, not to mention the devastation they wreak on public health.

No one--and I mean, no one--is served by shortcuts in ethical practices in scientific and medical research. When people start to think that the cause outweighs the need to adhere to established ethics, everyone loses, especially the vulnerable, exploited human guinea pigs who are sacrificed for the "cause." Real science does not have or need prophets to whom the rules don't apply. Real scientific ethical practice does not countenance or engage in ethical shortcuts, not even on the grounds of exigency.

No need of mine or anyone else's to understand the roots of autism or to "cure" it (a total pipe dream based on the real science in-hand) outweighs the peril attendant on ignoring medical ethics. Do the people excusing Wakefield have any idea how slippery the slope is where they're balancing and rationalizing? Do they realize what lies there at the bottom? Children, brutalized and tested and tortured in the name of science, in the name of a cause. I, for one, am not interested in getting close to that edge, not for all the knowledge about autism in the world.

Thanks, Simpsons and HBO!

Our middle son is seven years old, and I think it's taken me every day of his 7+ years to figure that child out. True confessions: He's been more difficult for me to unravel (figuratively, in my mind) than either of my other sons. With TH and Little, I got them--get them--without even thinking about it. It's like I've done a Vulcan mind-meld on them and share their thoughts and feelings without effort.

But the mind meld has failed with Dubya so far. It's not because I love him less--I love that great little boy with all the loving power I've got. It's because he's...so damned complicated. With TH, what you see is what you get. With Little, I'm learning what it might be like to be around a neurotypical child, and while that's novel for us, he's also a clear case of transparency. Dubya, however, is close. He does not speak of feelings except for the fear and anxiety he expresses in his confessionals. He does not show emotions until they explode from him. He's a tight little ball of enigma and repression, the latter of which unspools tornadically when the pressure finally overwhelms.

And then there are those obsessive thoughts, zipping through his brain like hummingbirds on speed, out of his control. His hatred for girls, his worries about Nazis, his fears that he's done something terrible when he hasn't. And while these things have angsted his parents for months and months, it took "The Simpsons" 20th anniversary episode to let us know that at least one of his behaviors must be pretty damned par for the course.

It's the introduction of a princess to the Krusty the Clown show. The episode flashes back and forth between the princess, warbling a la Snow White ca. 1930s, and two boys, Millhouse and Bart, sitting on the floor, rocking and moaning, their hands over their ears or eyes. Just. Like. Dubya. Does. Yay! It seems so disturbing when he's doing it in our livingroom, but I feel like "The Simpsons" just confirmed for us that it's a reasonably widespread phenomenon.

Having crossed "misogyny" off my list of concerns--I figure this evaporates someday to be replaced by a solid and lasting lust--I have Temple Grandin and the new HBO biopic about her to thank for my other epiphany about my little enigma. I've heard her mention her inner visual filmstrip in previous interviews but had never linked it to Dubya because, well, Temple Grandin is autistic and seemed to be describing something specific to her autism, and Dubya's just...complicated. But reading things similar to this Today Health interview with her made something start to click.

As we were checking out of a video store last week, I noted that Dubya had exiled himself into a corner of the store, face deliberately turned away from all the enticing or terrifying video rental covers and posters. He just couldn't stand to look at them. And it occurred to me that this behavior wasn't just 7-year-old drama. In a flash of brilliant insight that I likely should have experienced about 5 years ago, I realized that Dubya's visual world was probably not remotely like mine. No child who draws this or this at the age of six sees the world the way I do.

I realized that his visual world is probably overwhelming, that it must sometimes be right there, up in his face, visually shrieking at him, looming large, flooding his mind, sometimes painfully. Just as my ears cannot bear certain noises or noise combinations, his eyes feel things mine never will. What I see in this world probably looks like something off my parents old 1970 Zenith compared to the clarity of his HDTV world. I think he's so remarkably visual that he may be like Temple Grandin in that sense, mentally scanning an image catalogue like a Google Images search, and seeing things that the rest of us do not.

So, I told him my ideas. I told him that because he's a visual artist, he may see the world in ways that regular non-artist folk like me do not. That he may feel more, literally sense more, than us non-artist types, and that I was going to try to remember that so I could understand him better. He agreed and has taken to the idea. I'm taken with the idea that thanks to Temple Grandin's new biopic on HBO, Bart Simpson, and a fortuitous observation in a video store, I may finally be unlocking some of the secrets of my middle child. Yes, it's true. It took the visual arts for me to begin to understand my most visual of children.

And the collapse is complete

The Lancet has now issued a full retraction of the notorious Wakefield et al. paper that kicked off the deep anti-vaccine hysteria that now pervades many countries worldwide.

I am closely familiar with this paper, which, by the way, never stated that it had established a link between vaccines and autism--in fact, it said quite the opposite. But the reason I'm so familiar with it dates back to 2002, when TH was not yet in his first summer of life, had not yet celebrated his first birthday. He'd exhibited some...unusual...behaviors, and I had already asked his pediatrician twice if his behaviors might be related to autism. His pediatrician--this was, after all, 2002--decided "no" on the basis of TH's eye contact with me and on his using words. Of course, his words were things like, "Classical 89.5 FM, Austin, Texas!"--but they were still words.

As we neared different vaccination times, I researched the vaccines TH would be receiving. One new vaccine at the time was Prevnar, which they offered us early on and I declined because I hadn't looked into it yet. But I did research the MMR, and as a scientist and science writer, I was already well aware of the Wakefield et al. paper. I downloaded the entire thing and read it. Nowhere in that paper could I find anything linking MMR and autism, and then there was this clear statement: "We did not prove an association between measles, mumps, rubella vaccine and the syndrome described."

I searched the literature further, found out that the MMR never even had thimerosal in it, and moved on. And TH was showing many signs of his "condition" well before he got that shot.

Most of our shots were delayed for one reason or another, some because I needed to do more research, some because of a case of the sniffles, some because I sort of forgot to make the appointment for the scheduled time (he was our first--these things were new to me). As I've described before, I tensed before every shot, was hypervigilant after each jab, watching for signs of a reaction. I've never felt blase about vaccines, even as I tried to let my rational mind keep the upper hand in these decisions. I've always recognized that they carry a small level of risk, one that triggers all of my powerful parental emotions: fear of harming my children through my own decisions, fear of my children suffering chronic damage, fear of a convulsion or brutally high fever. And I deeply, deeply feel for parents whose children suffer those acute, traumatic reactions to these first of many risks we take on their behalves.

And I won't say that there isn't a small population of people--perhaps those with mitochondrial disorder or some as-yet-undetected risk factor--whose reaction to a vaccine triggers some kind of developmental regression or delay, one that might well be triggered by a high fever related to an illness itself. I've seen literature that describes these scenarios and hypothesizes exactly that, and I know that at least one respected autism research center identifies a "regression" type of autism. I would never rule out environmental factors anyway because no gene is an island. Of course there will be environmental factors involved in any manifestation rooted in the genes.

But I read that Wakefield et al. paper and found that it offered nothing in the way of evidence for a specific link between MMR and autism. Twelve children with disorders of apparently hetergeneous manifestation? Sufficient to build a lasting hysteria, certainly, but scientifically speaking, flimsy indeed. And now, scientifically speaking, it has been evaporated completely.

What it's left behind is a residue of bitter politics, parental recrimination, and enormous divisiveness, especially in the autism community. I wonder--with the canker of bad science lanced and drained, will it now be allowed to heal?