Autistic people and NTs: Who has trouble reading whom?

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

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

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

Just askin'. What's your experience?

Autism and adolescence: painful synergy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why "Autistics" isn't a bad word

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

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

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

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

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

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

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

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

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

Thanks, Ricky Gervais, for the pitch

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don't give a damn about my reputation

With thanks to Joan Jett:

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

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

It has been well established that ASD features reduced empathy

Gaaaah!

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

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

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

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

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

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

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

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

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

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

Perhaps you've heard about the autistic mice

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

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

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

More....

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

A tale of two papers

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

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

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

First, what do they mean by significant?

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

This is from the paper:

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

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

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

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

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

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

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

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

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

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

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

And here's the related figure:

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

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

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

Conclusions?

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

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

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

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

And so on.

Confounding as H-E-double hockey sticks

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

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

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

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

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

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

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

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

What's really significant?

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

But what does the literature say, you may ask

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

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

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

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

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

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

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

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

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

Who are these authors?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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