The Uninspired Profession

When modern scientists begin talking process, design and methodology, that's when I know that science has left the room.

Taxonomy

If it were up to me, those who are commonly called modern scientists would instead be classified by their more accurate name—technicians. That would not make them any less valuable—indeed, the work of technicians is often precisely what is called for and can often be the most valuable. For instance, as scientists, Michelson and Morley were not in the same league as Lorentz and Einstein, but where might Lorentz and Einstein have been without the clever experiments of Michelson and Morley helping to light the way. Credit must always be given where credit is due.

But these days, both taxonomic groups—scientists and technicians—find themselves gravely damaged by the insistence of the tens of millions of technicians among us on calling themselves the only true scientists, a total eclipse of the former upon the latter. If one truly understood the nature of science, if one truly thought about it for a moment, then the idea of tens of millions of scientists walking among us would of course be laughable. But this is a joke that never occurs to the gathering throng.

When Ben Goldacre exposes the characteristics of bad scientists, what he is actually describing are the characteristics of bad technicians—science in fact never enters the discussion. Indeed, that's the main problem in nearly every instance of this so-called modern age of science—science never enters the discussion.

In an era in which being a good technician is both stubbornly and somewhat obnoxiously mistaken for being a good scientist, count me as one proud to be instead a bad scientist.

Angling for Trouble

The autism buzz fest du jour is the nearly universal outcry against Sharron Angle's recent remarks regarding autism insurance mandates. Let me state from the outset that I have no sympathy for Ms. Angle—her apparent use of quotes around the word “autism” was uncalled for and off point, and her understanding of actual autism issues appears to be pretty much non-existent. Of course, this distinguishes her from most other public officials, and nearly all autism scientists, only in the sense that Ms. Angle has committed the error of making her ignorance both public and obvious.

On the underlying issue, however—that of autism insurance mandates—the situation is far more murky than the many critics of Ms. Angle would have us blithely believe. As I have stated previously, autism insurance mandates are a clear instance of placing the cart before the horse, because the treatments being mandated for coverage—mostly ABA and pharmaceutical interventions—are not only undemonstrated as effective, they carry considerable risk of actually doing more harm than good. Everyone needs to stop and remember that expense is not a synonym for value, and that intervention is not a synonym for efficacy. Mandating insurance coverage for costly treatments that might be ineffectual at best, and harmful at worst, is certainly not in the best interest of autistic individuals. Ironically enough, what clearly would be in the best interest of autistic individuals, yet are often mandated against—acceptance and understanding—these things cost nary a cent.

Adding further confusion to the matter, we now have ASAN weighing in on the issue, in the form of an online petition calling for an apology from Ms. Angle. Unfortunately for ASAN, it has lost all its credibility on this issue by jumping headlong onto the bandwagon of insurance reform, turning a willfully blind eye to the unscientific and illogical nature of its policy. If ASAN really wants to help autistic individuals, then I think it should be far less concerned with Ms. Angle's remarks than with the potentially harmful effects of the dubious treatments ASAN now publicly and vigorously supports. Indeed, if this is going to become a battle between Ms. Angle and ASAN, then I hope it is a battle both sides lose, because trust me, no matter how ignorant and illogical Ms. Angle's remarks and attitudes might happen to be, the remarks and attitudes on the other side of the autism insurance mandate issue—including those of ASAN—sound no less ignorant and illogical.

Some Housekeeping

A couple quick notes, while I have the chance:

In addition to the posts from Kerry Magro that I have mentioned previously, Autism Speaks has published in recent weeks a near rash of additional accounts coming straight from autistic individuals. There have been at least two posts by Lydia Wayman and another by Dave Beukers. All have been well written and highly informative about the autistic experience, and I greatly recommend them.

With these recent posts and a few other small initiatives involving autistic individuals, I'm almost beginning to believe that it has suddenly dawned on Autism Speaks what “in their own words” actually means. Of course, none of this quite atones for the rest of Autism Speaks' many sins, but I do want to give the organization credit where credit is due.

On a more personal note, there has been little blogging here of late (not to mention, all my other writing has come to a halt as well), and that likely will continue for at least another month or so. My most recent work assignment has become intense, taking more time than usual, and until matters ease I'll have to remain content with being a quiet spectator in the world of autism debate, rather than the surly participant I would much rather be. In the mean time, however, please have a good end to the summer.

In Their Own Words

I want to draw attention to another post made by Kerry Magro on the Autism Speaks blog. Mr. Magro, who apparently is interning for Autism Speaks and will be a senior at Seton Hall this coming year, outlines some of the challenges involved in obtaining “reasonable accommodations” in a college setting. During his description, he provides many helpful insights from his own experience of striving towards independence, with and without support.

Mr. Magro's post is straightforward, accurate and informative, which puts it in stark contrast to nearly all the other posts made on the Autism Speaks blog, including many posts made by non-autistic individuals under the banner of “In Their Own Words” (oh, the irony of it all). These other posts have dealt primarily with such matters as the challenge of being a parent to an autistic individual, the challenge of being the sibling of an autistic individual, the challenge of being an autism researcher working with mouse models, and the challenge of baking autism advocacy cookies. But when it comes to addressing the actual challenges and rewards of autism itself, that mantle is successfully assumed only when Autism Speaks resorts to that rarest of events, publishing the words that come straight from an autistic individual (oh, the doubled-back irony of it all).

It would be hard for me to overemphasize how much this culture can actually learn about autism simply by allowing autistic individuals to speak for themselves and in their own words. Hey, Autism Speaks, are you really listening?

Shocking Words

In a certain sense I of course agree with the many responses given to my recent post that expressed extreme displeasure with that post's choice of words. The use of words such as “cure” and “eradication” to describe individuals and their characteristics is always offensive, insulting, and inexcusable. Count me as guilty. Express your outrage. It's a reasonable thing to do.

But of course I did not choose either those words or the target of those words idly. Ms. Stagliano, her supporters and Autism Speaks all routinely employ words such as “cure” and “eradication” to describe autistic individuals and their characteristics, and the application of those words against autistic individuals is no less offensive, insulting and outrageous than in any other instance. I only wish that those who are so quick to take umbrage at my remarks about Ms. Stagliano would be as equally quick to take umbrage when she and others apply such terms to autistic individuals. If that were to happen more frequently, I would gladly accept any humbling that is my due.

It is interesting to note that a similar course of events has already played out for the most part in the homosexual community. Forty to fifty years ago it was a routine practice to describe homosexuals as in need of a cure and to target their characteristics for eradication. Homosexual individuals quite rightly took offense to such terms and ideas, fought long and hard to overcome them, and today such phrases and efforts have all but disappeared from the culture. The few holdouts who continue to spew mindless invective against homosexuality are now widely recognized as being bigoted and narrow-minded; they are actively spoken out against, they are no longer tacitly approved. (And if someone were to suggest to these homophobic individuals that they were the ones in need of a cure and it was their intolerance that was in need of eradication, you can be sure it would be they and their supporters who would be the first to holler about being insulted and offended.)

If one wants to be treated with respect and dignity, then the place to begin is by treating others with respect and dignity—all others. This is a lesson the autism advocacy community is badly in need of learning, because the number one issue facing that community is its ongoing lack of respect and understanding for autistic individuals. The whole point of my original post was to impress upon the members of that community their need to treat autistic individuals with more acceptance and to see the situation more often from the perspective of autistic individuals. My rhetoric might seem a little too shocking and harsh at times, but if this culture is ever going to rise to the level of treating its autistic members with the dignity and respect they deserve, the autism advocacy community is going to have to be disturbed out of its currently offensive, insulting, and mindless ways. Maybe I go too far at times, but sometimes it's of more value to be a prod than to be polite.

The Ugly Face of Autism

I agree with Kim Stagliano absolutely. Her latest post, in its entirety, would make an excellent choice for an Autism Speaks advertisement. All the essential ingredients are there:

• A picture of a beautiful autistic child engaged in an interesting, meaningful and no doubt productive activity for her—clearly delighted to no end.
• A hovering, disapproving parent describing the entire tableau as “pain,” bemoaning the family's autism fate to the entire world, and wishing for someone—anyone—to do something—anything—to bring this horrible ordeal to an end.

Yes, that captures the ugly face of autism in a nutshell, and Autism Speaks would do well to consider it for its next public service announcement. Now if we could only get Autism Speaks to sponsor some form of cure against the Ms. Staglianos of the world (it can be biomedical, pharmaceutical or behavioral—I really don't care) I might find myself supporting that organization's eradicating mission.

The Cup Half Full

I want to comment quickly on two positive Internet posts that have appeared today in two very negative Internet locations.

The first post is a brief essay entitled Coming Out: Autism in College, written by an autistic individual, Kerry Magro. It appears under the heading In Their Own Words on the Autism Speaks blog, which is something of a doubled-back irony since it is an extremely rare event for the In Their Own Words section to actually incorporate the words of autistic individuals. (Autism Speaks seems to think that phrase means non-autistic individuals speaking for autistic individuals, which although par for the course for Autism Speaks, is both illogical and offensive under the heading In Their Own Words.) And Mr. Magro's post demonstrates quite effectively why it is such a terribly bad idea to have non-autistic individuals speaking for autistic individuals, because Mr. Magro—speaking quite capably for himself—demonstrates that autistic individuals—when allowed to speak for themselves—can be uncommonly articulate, insightful and courageous. Addressing both the challenges and the triumphs of his condition with a precision an outsider could never dream to muster, Mr. Magro manages to expose the relentless pity- and fear-mongering of Autism Speaks as little more than an outrageous lie.

I don't always agree with what autistic individuals have to say. I undoubtedly would not agree with everything Mr. Magro might have to say. In some instances (Jonathan Mitchell comes readily to mind), I might not agree with much of anything at all. But I can't stress strongly enough how important it is that we actually hear those autistic voices and that we provide autistic individuals with every possible opportunity to speak for themselves. It is an atrocity—an offensive atrocity—to have non-autistic individuals speaking as mouthpieces on behalf of autistic individuals. I would note that Mr. Magro is described as a staffer for Autism Speaks. He might want to consider questioning his organization about why that organization seems so intent on putting words into his own mouth, when Mr. Magro is so clearly capable of speaking eloquently and rightfully for himself.

The second positive post coming from a negative location arrives courtesy of Mark Blaxill and the Age of Autism web site. In his lengthy report New Autism Consortium Study Proves (Again) that Inherited Genes Don't Cause Autism, Mr. Blaxill outlines the many reasons for his skepticism regarding the recently publicized report in Nature regarding autism genetics. Mr. Blaxill has done this kind of thing before (and I have commented upon it), and as hard as it might be to believe, he's actually getting better at it. This most recent post is detailed, well researched, sanely reasoned, and even manages to avoid (for the most part) Mr. Blaxill's rather unfortunate and common tendency to descend into ad hominem and other lazy forms of argument. Although I wouldn't go so far as to say his use of logic and scientific analysis rises to the standards of say a Michelle Dawson, it does come within a reasonable shouting distance, and it makes a telling contrast to the commentary supplied for instance at Respectful Insolence, a blog for which I have a much greater philosophical affinity in general, but which seems, at least in this instance, to be willing to take traditional scientists at their word instead of looking more carefully at their data. (A skeptic who is skeptical only of opposing points of view is not really a skeptic).

It's not lost on me of course that this is Mark Blaxill we're talking about. It remains utterly dumbfounding to me that someone who can be so thorough and insightful in criticizing a report on autism genetics can also be so willfully dense when it comes to analyzing his own perspective. For instance I shudder to imagine what gobs of illogical and non-scientific drivel will most likely ooze out of Mr. Blaxill's forthcoming book The Age of Autism: Mercury, Medicine, and a Manmade Epidemic (co-authored with Dan Olmsted). Or to consider it another way, if we could only take Mr. Blaxill's post and substitute the word “vaccines” for “genes” and the phrase “environmental toxins” for “copy number variants,” I am sure we would have the perfect outline for an accurate criticism of Mr. Blaxill's own form of autism science.

As I have suggested in other places, what both Mr. Blaxill and many autism research scientists need to do is take a step back from their entrenched positions and find out what they actually have in common. Because in point of fact everyone is beginning from the same place. Neuroscientists assume that autism is the evidence of something gone horribly wrong and begin looking all over the place for brain dysfunction—and get essentially nowhere. Genetic researchers assume that autism is the evidence of something gone horribly wrong and begin looking all over the place for genetic defects—and get essentially nowhere. Mr. Blaxill and his supporters assume that autism is the evidence of something gone horribly wrong and begin looking all over the place for environmental toxins—and get essentially nowhere. My question is, how long do we allow these groups to get essentially nowhere before we begin wondering if perhaps autism is not the evidence of something gone horribly wrong?

Which brings us back to Mr. Magro and his post at Autism Speaks. It is clear from his words (his own words, not the words of others) that it has been impressed upon him quite frequently that his autism is the evidence of something gone horribly wrong. But there remains something defiant in Mr. Magro's words (his own words, not the words of others). There is a defiance in his content, in his tone, in his execution. It is almost as if Mr. Magro is forcing us to address that question, what can possibly be so horribly wrong about an individual who is so hopeful, insightful, courageous and eloquent? And the answer of course is obvious: there is not one damn thing wrong with that individual.

Perhaps it is time to consider autism as the evidence of something gone remarkably right.

Genetic Litany

Chromosome 7q36, engrailed homeobox 2(EN2), the 16p11.2 region, 15q11.2, 15q13.3, 16p13.11; four regions located on 18q (MBD1, TCF4, NETO1, FBXO15); the PON1 gene; MECP2, TM4SF2, TSPAN7, PPP1R3F, PSMD10, MCF2, SLITRK2, GPRASP2, and OPHN1; encoding methyl CpG-binding protein 2; the SHANK2 synaptic scaffolding gene; the 5-HT(2A) receptor gene; neurexin-1 (NRXN1), chromosome 17p13.3, the two genes TUSC5 and YWHAE.

Cell adhesion molecule 1 (CADM1); RELN and GRIK2; MKL2 and SND1; chromosome Xp22.11-p21.2 that encompasses the IL1RAPL1 gene; the GABA receptor gamma 3 (GABRG3); neuroligin (NLGN4X); the FMR1 gene; region 10p14-p15, 7p22.1, the Q6NUR6 gene, JMJD2C gene at 9p24.1, 1p21.1, 6p21.3 and 8q21.13; Mecp2-null microglia; R1117X and R536W; SHANK3 mutations, GABA(A) receptor subunits, ASMT, MTNR1A, MTNR1B; RORA and BCL-2 proteins; DOCK4 microdeletion on 7q31.1, 2q14.3 microdeletion disrupting CNTNAP5; chromosome 2q24.2-->q24.3, telencephalic GABAergic neurons, position 614 of diaphanous homolog 3 (DIAPH3), 22q13.3.

Chromosome 2q37, 4q35.1-35.2, 8p23.2; chromosome 8p and 4q, P-glycoprotein gene (MDR1/ABCB1); glutamate transporter gene SLC1A1, IL1RAPL1 gene mutations, neuroligin mutants; SCAMP5, CLIC4 and PPCDC; fatty acid-binding protein (FABP7), 5-HT transporter gene (HTT, SERT, SLC6A4); proteins neurexin1 and PSD95; Cav3.2 T-type channels, chromosome 7q22-31 region; neuroligin-4 missense mutation; ADRA1A, ARHGEF10, CHRNA2, CHRNA6, CHRNB3, DKK4, DPYSL2, EGR3, FGF17, FGF20, FGFR1, FZD3, LDL, NAT2, NEF3, NRG1, PCM1, PLAT, PPP3CC, SFRP1, VMAT1; SLC18A1, microcephalin 1 gene (MCPH1).

Genetic polymorphisms of cytochrome P450 enzymes, 2p15-16.1, neurobeachin (Nbea); rs1858830 C allele variant, 3q26.31, serotonin receptor 2A gene (HTR2A); 1q42 deletion involving DISC1, DISC2, and TSNAX; alpha4beta 2 nicotinic acetylcholine receptors, adenosine A(2A) receptor gene (ADORA2A) variants; chromosome 1p34.2p34.3, synaptic vesicle gene RIMS3; microdeletions at 17q21.31, linkage loci on chromosomes 7 and 2; 2q37.3 deletion, neuroligin-3 R451C mutation; 2q24-2q31, 7q, 17q11-17q21; synaptic genes NLGN3, NLGN4, and CNTNAP2; dysfunctional ERK and PI3K signaling, ribosomal protein L10 (RPL10) gene, glutamate decarboxylase gene 1 (GAD1) located within chromosome 2q31.

Breakpoints on chromosomes 5 and 18; short arm of chromosome 20, chromosome 20p12.2, serotonin receptor genes HTR1B and HTR2C; genes at 3q25-27, deletion of chromosome 2p25.2, chromosome 10, chromosome 1q21.1; Joubert syndrome gene (AHI1), deletion in 6q16.1, including GPR63 and FUT9; duplication of 8p23.1-8p23.2, NLGN4Y gene, inverted duplication of proximal chromosome 14; SYNGAP1, DLGAP2, X-linked DDX53-PTCHD1 locus; interstitial deletion 9q31.2 to q33.1, methyl-CpG binding protein 1; balanced de novo translocation between chromosomes 2 and 9; contactin 4 (CNTN4), chromosome 2q24-q33 region, PAX6 gene; deletion on 18q12, chromosome 5q31, PTEN, 13q21.

Microdeletions at 7q11.23, chromosomes 1p, 4p, 6q, 7q, 13q, 15q, 16p, 17q, 19q, 22q; FMR1 protein, FOXP2 gene; 2q35 and 8q21.2 breakpoint, sodium channels SCN1A, SCN2A and SCN3A; paternally derived chromosome 13, somatostatin receptor 5 (SSTR5) on chromosome 16p13.3; terminal 11q deletion and a distal 12q duplication, APOE protein, allelic variants of HOXA1/HOXB1; notch4 gene polymorphisms, AVP receptor 1a (AVPR1a), mitochondrial aspartate/glutamate carrier SLC25A12 gene; Arg451Cys-neuroligin-3 mutation, language loci on chromosomes 2, 7, and 13; de novo translocation t(5;18)(q33.1;q12.1), p11.2p12.2.

Mu-opioid receptor gene, chromosome 16p13.3, trisomy 15q25.2-qter; 14q32.3 deletion, autism loci on 17q and 19p, linkage at 17q11-17q21, linkage on 21q and 7q; 3q29 microdeletion, haplotypes in the gene encoding protein kinase c-beta (PRKCB1) on chromosome 16; 6p25.3-22.3, SLC25A12 and CMYA3 gene variants; chromosome 3q25-27, inversion inv(4)(p12-p15.3), partial trisomy of chromosome 8p; locus in 15q14 region, terminal deletion of 4q, duplication at Xp11.22-p11.23; SEMA5A expression Tachykinin 1 (TAC1) gene SNPs, TPH2 and GLO1; biallelic PRODH mutation, recurrent 10q22-q23 deletions, neuropilin-2 (NRP2) gene polymorphisms.

Yes, I know—it might have taken less space to list the genetic features scientists have not implicated in autism's etiology.

A Different Perspective on a Likely Mirage

One more thought regarding the report recently published in the journal Nature, Functional impact of global rare copy number variation in autism spectrum disorders (Pinto et al., 2010):

If someone wanted to put forth the hypothesis that rare copy number variation has no causal relationship whatsoever to autism, he would be hard pressed to find a more supportive set of evidence than the data supposedly backing the claims being made in (Pinto et al., 2010). Desperate people often see fantastic visions.

A Futuristic Vision

I can see where this co-authorship thing is heading. One day in the not too distant future a paper will appear entitled Today, consisting of a single sentence: “We did some stuff.” The authorship list will comprise the names of the six billion some human inhabitants of this planet, and the paper will be published in the journal Nature, which seems to have a hankering for these things. Everyone can then go about their business of applying for tenure, comfortable in the knowledge it will not be denied.

I hope that day comes soon; in fact, it cannot arrive fast enough. Because then maybe someone—anyone—will finally feel free enough to develop an idea on his own.

How To Talk Like a Modern Scientist

Humans were once curious as to why certain homes had an address of Toledo, Ohio while most homes did not. Modern scientists, attracted by some sizable grants, decided to look into the matter. Here is what a few of them had to say about their findings:

“We compared furniture arrangements of a large set of Toledo homes versus controls and found that if we focused on unusual furniture arrangements (those found in less than 1% of the homes), we could get some interesting and hopefully publishable results. At first we were disappointed to discover that both Toledo and non-Toledo homes were equally likely to have unusual furniture arrangements, but when we cast our statistical eye further we noticed that for unusual furniture arrangements involving television sets (rare televisionic furniture arrangements), Toledo homes were somewhat more likely to have such arrangements than controls. This is a major breakthrough.”

“We discovered novel candidate furniture arrangements that significantly increase the risk of having a Toledo address. This will allow us to develop home decorative intervention strategies and get furniture therapists to front doors much quicker—in some instances preventing homes from ever appearing in Toledo, Ohio.”

“Our results substantiate the importance of unusual furniture arrangements in Toledo homes, and this is likely to change how home decoration is viewed in the Toledo area. Most people in the field believed that Toledo homes shared common furniture arrangements perhaps in just a few rooms. But in fact most Toledo homes are probably decoratively quite unique—each having their own form of furniture arrangement.”

“You and I may have just as many unusual furniture arrangements in our homes, but since they don't involve television sets, we don't live in Toledo, Ohio.”

“Of great significance to us was the finding that in seven of the Toledo homes there was an unusual furniture arrangement involving a Go Mud Hens pennant, whereas this unusual furniture arrangement did not show up in any of the controls. We double checked against a broad population of Canadian homes and confirmed that those also did not have any Go Mud Hens pennants. This is consistent with earlier findings of high risk Toledo furniture arrangements—such as those involving cheap bowling trophies.”

“The findings, to some extent, are not unexpected. These unusual furniture arrangements are turning up in a number of other cities so it is no surprise that they may be involved in Toledo, Ohio as well. How significant they are will await further testing as to how sensitive and specific these furniture arrangements are as well as what percent of Toledo, Ohio is involved.”

“We have been trying to put together a very large jigsaw puzzle without having the benefit of a nice colorful picture on the box. The unusual furniture arrangements are like the edges, you might say, and they give us an idea of what the picture may look like. With these findings, we are starting to find some of the edge pieces, and that may provide us with some sort of framework for looking at how these decorative schemes work in Toledo, Ohio, leading to cartological features and how these might work in collaboration with the geography, thus producing some of the Toledo houses that we can see around us.”

“The exciting thing about the findings of this study is that it highlights fashionable pathways that can be targets for renovation.”

“Even with these findings, we are able to explain only about 10 percent of the homes in Toledo, Ohio. What causes the other 90 percent of Toledo homes to be located where they are is still on the table. Every little victory is important, but it's still amazing how little we know.”

Indeed.

Questions Unasked

One of the advantages of being an outsider to autism science is that I get to ask simple questions. Take for instance autism's latest hullabaloo, the paper recently published in the journal Nature, Functional impact of global rare copy number variation in autism spectrum disorders (Pinto et al., 2010). There are questions about this study that the media will not ask, nor apparently will any of the study's nearly two hundred authors. I, on the other hand, have no such reservation:

• If particular types of rare copy number variants (CNVs) are only slightly more likely in autistic individuals than in non-autistic individuals (which is what the study indicates), and if the ratio of autistic individuals to non-autistic individuals is approximately 1:99, then aren't the vast majority of instances of these particular CNVs going to be found within the non-autistic population? And if so, how distinctive for autism can these CNVs possibly be?

• How is it that only the CNVs which are more likely in autistic individuals can produce significant consequence, whereas the hundreds of other CNVs (from both populations) are apparently benign? Is this science—or wishful thinking?

• How is it that the broad variety of CNVs more likely in autistic individuals (which are apparently the only ones that can produce significant consequence)—how is it that this diverse hodge-podge of CNVs can all lead to the same diagnosable condition? Is this science—or an amazing coincidence?

• If the purpose of this study was to uncover a genetic signature underlying autism, shouldn't the major conclusion of this study be that there isn't one?

There are reasons that simple questions go unasked, but those reasons seldom have anything to do with the actual results. I have heard the spin being placed on this study in the media, and I have also listened to what the study's authors have had to say, but I can tell you without hesitation that the study's raw data imparts an entirely different story. Let me put it this way: if you are one of the nearly two hundred scientists who has managed to finagle your name onto the authorship list, then the publication of this study is a positive result; otherwise, it is a whole bunch of nothing.

The Unique Accomplishment of Laurent Mottron

I have written previously on this blog about the many innovative and original contributions made by Laurent Mottron and the members of his autism research team, but it would appear this time Dr. Mottron has gone and completely outdone himself in the new paper appearing in the journal Nature, Functional impact of global rare copy number variation in autism spectrum disorders (Dalila Pinto, Alistair T. Pagnamenta, Lambertus Klei, Richard Anney, Daniele Merico, Regina Regan, Judith Conroy, Tiago R. Magalhaes, Catarina Correia, Brett S. Abrahams, Joana Almeida, Elena Bacchelli, Gary D. Bader, Anthony J. Bailey, Gillian Baird, Agatino Battaglia, Tom Berney, Nadia Bolshakova, Sven Bolte, Patrick F. Bolton, Thomas Bourgeron, Sean Brennan, Jessica Brian, Susan E. Bryson, Andrew R. Carson, Guillermo Casallo, Jillian Casey, Brian H.Y. Chung, Lynne Cochrane, Christina Corsello, Emily L. Crawford, Andrew Crossett, Cheryl Cytrynbaum, Geraldine Dawson, Maretha de Jonge, Richard Delorme, Irene Drmic, Eftichia Duketis, Frederico Duque, Annette Estes, Penny Farrar, Bridget A. Fernandez, Susan E. Folstein, Eric Fombonne, Christine M. Freitag, John Gilbert, Christopher Gillberg, Joseph T. Glessner, Jeremy Goldberg, Andrew Green, Jonathan Green, Stephen J. Guter, Hakon Hakonarson, Elizabeth A. Heron, Matthew Hill, Richard Holt, Jennifer L. Howe, Gillian Hughes, Vanessa Hus, Roberta Igliozzi, Cecilia Kim, Sabine M. Klauck, Alexander Kolevzon, Olena Korvatska, Vlad Kustanovich, Clara M. Lajonchere, Janine A. Lamb, Magdalena Laskawiec, Marion Leboyer, Ann Le Couteur, Bennett L. Leventhal, Anath C. Lionel, Xiao-Qing Liu, Catherine Lord, Linda Lotspeich, Sabata C. Lund, Elena Maestrini, William Mahoney, Carine Mantoulan, Christian R. Marshall, Helen McConachie, Christopher J. McDougle, Jane McGrath, William M. McMahon, Alison Merikangas, Ohsuke Migita, Nancy J. Minshew, Ghazala K. Mirza, Jeff Munson, Stanley F. Nelson, Carolyn Noakes, Abdul Noor, Gudrun Nygren, Guiomar Oliveira, Katerina Papanikolaou, Jeremy R. Parr, Barbara Parrini, Tara Paton, Andrew Pickles, Marion Pilorge, Joseph Piven, Chris P. Ponting, David J. Posey, Annemarie Poustka, Fritz Poustka, Aparna Prasad, Jiannis Ragoussis, Katy Renshaw, Jessica Rickaby, Wendy Roberts, Kathryn Roeder, Bernadette Roge, Michael L. Rutter, Laura J. Bierut, John P. Rice, Jeff Salt, Katherine Sansom, Daisuke Sato, Ricardo Segurado, Ana F. Sequeira, Lili Senman, Naisha Shah, Val C. Sheffield, Latha Soorya, Ines Sousa, Olaf Stein, Nuala Sykes, Vera Stoppioni, Christina Strawbridge, Raffaella Tancredi, Katherine Tansey, Bhooma Thiruvahindrapduram, Ann P. Thompson, Susanne Thomson, Ana Tryfon, John Tsiantis, Herman Van Engeland, John B. Vincent, Fred Volkmar, Simon Wallace, Kai Wang, Zhouzhi Wang, Thomas H. Wassink, Caleb Webber, Rosanna Weksberg, Kirsty Wing, Kerstin Wittemeyer, Shawn Wood, Jing Wu, Brian L. Yaspan, Danielle Zurawiecki, Lonnie Zwaigenbaum, Joseph D. Buxbaum, Rita M. Cantor, Edwin H. Cook, Hilary Coon, Michael L. Cuccaro, Bernie Devlin, Sean Ennis, Louise Gallagher, Daniel H. Geschwind, Michael Gill, Jonathan L. Haines, Joachim Hallmayer, Judith Miller, Anthony P. Monaco, John I. Nurnberger Jr, Andrew D. Paterson, Margaret A. Pericak-Vance, Gerard D. Schellenberg, Peter Szatmari, Astrid M. Vicente, Veronica J. Vieland, Ellen M. Wijsman, Stephen W. Scherer, James S. Sutcliffe and Catalina Betancur, 2010).

There you can see it for yourself, in plain black and white, defying what must have been nearly insurmountable odds—Laurent Mottron has somehow managed to get himself not included in the list of contributing authors. What else can I say—this is clearly a unique accomplishment within the current field of autism research.

Indeed, Dr. Mottron's feat is so unusual and amazing that it leaves me wondering how he possibly could have pulled it off. My suspicion is that Geraldine Dawson, panicked at the thought of perhaps being excluded from the authorship list (which would itself be a unique and amazing event), during her mad, entreating rush to track down the head author must have knocked Dr. Mottron over and rendered him totally unconscious for a considerable period of time, thus leading to his name not appearing on the roll. But little matter. In an accomplishment like this—where one has so definitively set himself apart from all his peers—the means are merely a secondary consideration, the accomplishment is the thing. My heartiest congratulations!

Memetic Residue

Can we assume that Richard Dawkins has plunged headlong (and superciliously) into his anti-religion career mostly because the biology gig did not work out?

Bright Dissent

I was thinking of fostering an Atheists Against Richard Dawkins movement, but unfortunately, its first commandment would have to be, “Thou shalt not be so fatuous as to foster a movement.”

The Takeaway from Autism Science

If you cannot conceive the context, and if you have no grasp of the concept, then all the material data in the world will serve only to feed your blindness—even good information turns rancid in the oppressive heat of ignorance.

Linguistics for Autistics

Language is the use of a biologically immediate artifact to represent something not biologically immediate.

Almost any material artifact can serve the purpose of conveying language—gestures, sound, nudges, smears in the mud. The larynx was convenient, but not essential.

Since the locus of language is the external, material world (not the inside of our human skull) language remains open to any life-form. If a species does not use language, it is because that species has nothing to say.

Humans had nothing to say for an incredibly long period of time—this species passed the better part of its existence locked inside its biological immediacy.

What is crucial about language is not its material form, but rather its representational form. That is what connects biological immediacy to conceptual distance.

If you are aware of a pattern, then you are aware of time. If you are aware of symmetry, then you are aware of space. But how do you inform your neighbor?

Among other things, language was a solution to autistic loneliness.

One cannot deceive within one's own biological immediacy. Deception is a consequence of language.

Not only is deception a consequence of language, it is an essential feature of language. The means by which one conveys biologically removed events are also the means by which one conveys biologically removed non-events.

As with nearly every other autism-inspired invention, non-autistics quickly co-opted language for their own use and bent it to their own purpose; and as with nearly every other instance of non-autistic pilferage, the twisted results have been stunningly and humanly prodigious.

Chomsky was doing just fine when he approached linguistics as a branch of logic. He only went awry after he began approaching linguistics as a branch of science.

The underlying structure of language (Chomsky's universal grammar) reflects the structure of the non-biological world: space and time, stasis and change, mass and energy. The underlying structure of language arises from autistic perception.

Language always acts (represents) in the here and now. Persistent forms of language—such as writing—convey the material of language across space and time, but the sending and receiving still occur inside someone's biological immediacy.

Although autistic perception launched human language and gave it its underlying structure, non-autistic perception soon provided a hefty adornment—language gained its biological and social girth practically overnight.

Pronouns are superfluous to language, as is gender—but try convincing the ninety-nine percent who would feel empty without them.

What value is you and I, we and they, he, she and it, when a proper noun would serve just as well? (That is a question asked by someone not strongly attached to the species.)

Small talk is a reminder of this species' former days, when language itself was superfluous. Subtext was once all we had, and all we needed.

Autistic children grow up to a language that has been corrupted—the biological and social adornments constantly throw them off.

Autistic and non-autistic individuals are both exceedingly logical—just not in the same way.

Mathematics, logic, science—these are all salves against deception, and as such belong under the umbrella of language, not the umbrella of the objective world.

An artifact of language can be used to represent language itself, but it is almost never wise to do so. Meta-language is a misuse of the tool.

Language is not an instinct. Even less so is it a human instinct. What most children have an instinct for is to do what other humans do.

There are no language modules inside the human brain, just the magical thinking modules of linguistics professors and cognitive scientists.

Together with self-reflecting mirrors and obsessive masturbators, Steven Pinker reminds us that expansive vision is possible only because cognitively diverse people have the wherewithal to get beyond themselves.

What Self-Constructed Means

Let me be clear: when Harold Doherty uses the latest CDC autism prevalence reports to support his oft-repeated claim that 75-80% of individuals with Autistic Disorder have an intellectual disability, he is fabricating that statistic. The CDC reports show no such thing.

Mr. Doherty “arrives” at his number by taking statistics applied to the entire autism spectrum, then waves his magic wand over the number of Asperger's cases that should be excluded, and voilà, out pops the 75-80% figure. That's a self-constructed (fabricated) statistic.

As I have offered to Mr. Doherty before, he can show me to be wrong (and earn my apology) simply by providing two items—his math and the data he used from the CDC prevalence reports. So far Mr. Doherty has declined to do either. Anyone want to take a guess as to why?

Autism and Intellectual Disability

Since Harold Doherty can't seem to stop repeating, ad nauseam, his self-constructed statistic about autism and intellectual disability, I thought I would counter with a real story about autism and intellectual disability, one involving some actual facts and one requiring a little more thought and attention than needed for just making up numbers or repeating the made-up numbers of others. This is a story about my own son.

Although I don't think our part of the country is typically included in the biennial CDC autism prevalence reports, if it were, this is the year from which Brian's records would be examined and tallied towards the total—he turns eight in a few months and thus he is part of the 2002 birth cohort to be counted as of 2010. And if Brian's records were to be included as part of that study, they would show him falling under the following two categories: Autistic Disorder and intellectual disability. In other words, in Mr. Doherty's narrow-minded view of the situation, Brian would officially qualify as one of the more dire autism cases—the cases Mr. Doherty wants everyone to focus on exclusively. So let's do just that. Let's focus on Brian's case.

Both those categorizations—Autistic Disorder and intellectual disability—result from the occasion of Brian's official diagnosis, received shortly after his fourth birthday. They are essentially the only evidence in Brian's records that the CDC would have to go on. When receiving his official diagnosis, Brian was given a thorough battery of tests, enough to extend over the course of two days, with the cognitive tests being given near the end of the second day. My wife was actually present with Brian as he was administered those tests, because someone was needed to help keep him seated and to help keep him focused long enough to be given the questions. Thus she was in a perfect position to report on how the entire episode turned out to be something of an unmitigated disaster.

There were several less-than-stellar moments, but the most telling incident came when the examiner asked Brian to count out loud from 1 to 10, to which Brian replied with complete silence and a little more squirming in his chair. After a brief period of time, the examiner repeated the question, to which Brian answered with still more silence and still more squirming, until finally the examiner noted the result on her chart and moved on to the next question. Needless to say, given this and several similar exchanges, Brian's overall cognitive score turned out to be significantly low.

But here's the thing:

This boy, who among other inabilities was being marked as unable to count from 1 to 10 at four years of age, was also the same boy who had been regularly entertaining himself from around the time of his third birthday by counting backwards from 100 to 1—cheerfully, voluntarily, and without mistake.

Like many autistic children, Brian does not like to sit still for very long, and he does not like to be barraged with an endless stream of questions. Even today, I would be hesitant to predict his performance on an IQ exam, because I'm not sure he would have enough patience to sit all the way through it. But I can tell you this much: anyone who has spent more than an hour with him would laugh hysterically at the notion of him being classified as intellectually disabled. He now reads at the third grade level. He does multiple-digit addition and subtraction. He is eerily adept at logic and probability puzzles. Plus he can talk up a linguistic storm as long as the subject is one that intrigues him (Disney and ceiling fans, for instance, would currently net you at least a ten-minute monologue). There has never been any doubt for those who actually know Brian: he may be highly atypical, but he is also highly intelligent.

Of course, the CDC will never know that.

Administering cognitive tests to any child under the age of about eight is a dubious procedure, but it becomes especially doubtful when applied to autistic children. There are many reasons autistic children will perform poorly and erratically on intelligence tests, with a good number of those reasons having nothing to do with the child's actual level of cognitive skill. If we are going to accumulate valid statistics on the relative intelligence of the autistic population, then the first thing we must do is focus on tests administered at older ages—exactly the opposite of what is currently being done.

And there are other factors to consider. For instance, as Michelle Dawson and her colleagues have been demonstrating, autistic individuals tend to evince a different kind of intelligence than do non-autistic individuals, an intelligence that often leaves behind an erratic trail across the range of standard cognitive tests, but an intelligence which nonetheless remains highly correlated to the types of cognitive skills often valued within the current culture. If we continue to compare autistic intelligence only to the norm, then we are going to continue to overlook many of the more valuable cognitive contributions autistic individuals have to make.

On the other hand, I don't want to be entirely pollyannish about the situation either. Clearly, there are also a significant number of autistic individuals who do experience various kinds and degrees of cognitive difficulty—difficulties that can often extend throughout a lifetime. The reasons for this phenomenon remain poorly understood and are a genuine cause for concern; and indeed, when one surveys the entire landscape of autism and intellectual ability—both the promises and the problems—what emerges is an extremely complex and puzzling picture. Autistic intelligence is different; it is also highly variable. Autistic intelligence is full of intriguing possibilities; it also gives rise to a surfeit of unanswered questions. Whatever else one might say about autism and intelligence, at the very least one must admit that these are fertile grounds for further study and exploration.

And in the end, I think that is what bothers me the most about Mr. Doherty's repetitive fictions. That he makes up his numbers and passes along the concocted platitudes of others—well, that is something I can deal with, because those activities simply mark Mr. Doherty as another nondescript member of the autism advocacy throng. But the facileness—that is what I found so hard to swallow. It can be only pure cognitive laziness that would prompt Mr. Doherty to fabricate statistics, thereby obscuring a wealth of valuable and potentially helpful information about autism and intelligence. And in my opinion, it is that cognitive laziness that needs to be classified as autism's true intellectual disability.

Upcoming Schedule

I want to let everyone know that the blog entries here will be somewhat less frequent and more erratically spaced throughout the remainder of 2010. Part of the slowdown can be chalked up to some blog fatigue and of course the ever present demands of parenthood and a full-time job. But the bigger reason is that I want to devote more time to a new project:

What I essentially am going to do is take a subset of these blog posts from the last two years, clean them up, add a few items to them, and reassemble the lot into a more cohesive, publishable-friendly format—probably something along the lines of what I did with Autistic Symphony. My expectation is to have the project completed by the end of the year.

ASAN's Reply to My Open Letter

I was tempted to leave the body of this post blank, but let me state more straightforwardly that ASAN has simply chosen not to reply to my open letter regarding the organization's honesty and integrity. That is of course ASAN's right, and nothing unusual need be inferred from its exercising of that right.

For me personally, however, the silence is disappointing. Keep in mind that ASAN, through regular email requests and at no prompting from me, frequently asks for my support, and keep in mind that I have been generally desirous of giving that support. ASAN has done good work in the past—for instance, its rallying of support against the Ransom Notes campaign. And the stated goals of ASAN are ones that, generally speaking, I believe would be beneficial for nearly all autistic individuals.

Nonetheless, I refuse to hold ASAN to any lesser standard than I would hold any other organization that asks for my support, and that includes standards of transparency, honesty and integrity. Speaking bluntly, I have never found ASAN to be a very transparent organization, and as I think this latest incident has demonstrated, ASAN appears to have some work ahead of it if it is going to meet consistently the principles of honesty and integrity.

Going forward, I remain willing to keep an open mind and a tentative eye for ASAN, but that organization needs to realize that if it is going to continue to ask for my support, then in return I am going to seek evidence that it is meeting the highest organizational standards. Lately, that evidence has been very difficult to find.

One final matter: political expediency. I have never myself heard directly from ASAN that it is willing to place political expediency above principles of accuracy and openness, but I have heard far too often from ASAN apologists that various forms of political expediency are at times necessary and valid tactics to be employed against the so-called opposing forces. To that line of reasoning, my reply is unqualified, and it goes like this:

What autistic individuals need more than anything is accurate information, along with acceptance, support and understanding based upon that information. Autistic individuals need accurate information more than they need treatments, more than they need funding, more than they need laws; for without accurate information, all those efforts would be pointless. What autistic individuals do not need is more political and personal expediency. Autistic individuals have suffered a long history of burden from organizations all too happy to practice political and personal expediency at the expense of accurate information—Autism Speaks, DAN, FEAT, Generation Rescue, ASA, the Judge Rotenberg Center—the list goes on and on. Thus it is important to state with unqualified clarity that autistic individuals do not need the burden of suffering from one more such organization—even if that organization happens to be run by autistic individuals.

Treasures

On what I hope is a more productive note than my previous entry, I would like to draw attention to a series of posts being made on parenting over at Brett's Waste Blog. These posts generally highlight the value of celebrating what is unique in each child and of encouraging children to pursue individual interests and strengths—no matter how unusual those interests and strengths may seem. Such ideas should be applied to all children of course, but they are particularly important for autistic children, many of whom are not celebrated and not encouraged for being who they are.

One day, I hope to record a few thoughts and observations about my own son. I think I have held back so far simply because I do not have the rhetorical skills to do him justice, but what I can report today is that as he approaches his eighth birthday, he remains both obviously autistic and extraordinarily delightful. In many respects my son serves as the perfect counterexample to those who insist that only intense treatments and early intervention can help an autistic child progress; for having experienced none of these, my son has developed into an individual full of warmth, joy, skill and complexity, an individual with a unique and valuable perspective upon his world. I stand in complete awe of him, and I also stand aghast at the thought of anyone wishing for him to be any other way than the way he actually is.

It is my firm conviction that when we approach autistic children as medical problems in need of being fixed, we end up throwing away one of humanity's greatest treasures.

An Open Letter to ASAN Regarding Its Honesty and Integrity

To the Autistic Self Advocacy Network (ASAN):

I would like to request clarification on the matter of the Cat in a Dog's World blog and its affiliation to an ASAN Chapter Director. In particular, I would like to know the following:

1. Is ASAN aware that ASAN leaders are blogging pseudonymously in support of ASAN and its policies?
2. Does ASAN condone or encourage this practice?
3. If ASAN does not condone or encourage this practice, would ASAN be willing to speak out publicly against this practice and remind its leaders that they are expected to conduct themselves with honesty, openness and integrity at all times?

This is not a small matter for ASAN. Undisclosed pseudonymous blogging in support of ASAN and its policies reflects poorly on both the individual and the organization. This practice, to put it quite simply, is dishonest. I am willing to accept that the original intentions were simply a question of poor judgment, but the indications are that the individual involved wishes to continue this practice even after being made aware of its unethical nature. Furthermore, ASAN's silence on the matter makes it unclear if the organization itself understands the consequences of these actions.

I look forward to ASAN's reply regarding these questions and concerns.

Respectfully,

Alan Griswold

The Emergence of Early Behavioral Signs of an Autism Research Disorder

It looks as though I will to need to interrupt my blogging break before it has had much of a chance to begin:

The occasion for this interruption is the online publication of A Prospective Study of the Emergence of Early Behavioral Signs of Autism (Ozonoff et al., 2010). Note that I have recently posted my thoughts regarding a different paper from this same general group of researchers, Play and Developmental Outcomes in Infant Siblings of Children with Autism (Christensen et al., 2010), a paper I generally decried as containing too much researcher bias and too much reliance upon the use of concocted measures. But as luck would have it, Christensen et al. (2010) was apparently only the warm-up act: when it comes to researcher bias and concocted measures, surely nothing can hold a candle to Ozonoff et al. (2010).

And I am starting to worry. Observations of infants and toddlers who are at high risk for autism (because they have older siblings who have already been diagnosed with autism) carry the potential of providing some valuable insight into the nature of the condition; but this will only happen if those observations arrive mostly unfiltered. Based upon what I have seen so far in Christensen et al. (2010) and Ozonoff et al. (2010), and given that a good portion of the research wherewithal directed towards at-risk children has been entrusted to this one tight-knit, rather homogeneous group of researchers, it appears as though these observations are not only going to arrive filtered, they are going to arrive after having been passed through a very distorting lens.

Let me begin by summarizing my complaints and concerns about Ozonoff et al. (2010).

1. The study is based almost entirely on made-up measures—measures designed to give the appearance of science when in fact those measures are not scientific at all. And as if that were not bad enough, those measures are then used, quite falsely, to create the illusion of comparable data, when in fact no such comparison is warranted. The findings of Ozonoff et al. (2010), while not entirely without merit, are based far too much upon a constructed fiction.

2. This particular group of researchers has been displaying a consistent bias in how it regards autism—etiology, preferred treatments, etc.—a bias that is strongly coloring the group's research methodology, and more importantly, is causing the group to overlook and dismiss data that does not fit into its preconceived notions. The findings of Ozonoff et al. (2010), while not entirely without merit, have been rendered needlessly incomplete through researcher bias.

3. For a so-called prospective study, Ozonoff et al. (2010) seems to have had a good portion of its structure retrospectively decided. While this is not sinister in and of itself, given the background of the researchers and given their potential interest in having the findings of these studies turn out in certain ways, it would seem that a greater premium would be placed upon methodological transparency and fair-mindedness. The findings of Ozonoff et al. (2010), while not entirely without merit, raise questions about general approach and about potential conflicts of interest.

Made-up Measures. There is a reason that much of science has been built up around the consistency of the yardstick and stop watch. I realize not all experiments can be conducted with quite the same degree of measurement consistency as is provided by distance and time—including within the field of autism research—and thus some leeway towards the use of broader techniques can at times be tolerated. But that leeway should not extend to complete freedom in making up measurement tools on an as-needed basis.

The measures upon which Ozonoff et al. (2010) relies are spelled out in the section “Measures Used to Track Behavioral Symptom Emergence,” a section surely deserving of a creativity award, but just as surely not deserving of the name science. Although I cannot do justice to the section myself—it really needs to be read to understand just how much measurement construction is actually going on—let me say that in essence it lays out various observer count and judgment statistics that are re-grouped and massaged together into categories freely labeled as face gazes, social smiles and directed vocalizations—“yardsticks” that I doubt have ever been employed in quite this way before, and quite likely will never be used this way again. True, these methods do allow for some crude observational comparisons between autistic and non-autistic individuals at similar ages—and so they are not completely worthless—but think about trying to repeat this experiment. Think about another research group having to train a set of observers to count face gazes or different types of vocalizations in precisely the same way as in Ozonoff et al. (2010), and you will realize there are no legitimate means by which to replicate this study, because the study has been based almost entirely on measures more fuzzy than a cotton ball.

But it gets much worse. Note that these made-up measures are applied to the study subjects at 6 months of age, 12 months, 18 months, 24 months, and 36 months, with the researchers then implying, straight faced, that these measurements can then be directly compared across all these ages. This is just the height of folly! Take face gazes for instance. Think about what might be counted as a face gaze coming from a six month-old, and then think about what might be counted as a face gaze emanating from a 36 month-old. I am not an expert on infants and toddlers, but I do not hesitate to say that the quality and characteristics of a face gaze from a six month-old are not going to be anything like those from a 36 month-old. That does not stop the Ozonoff et al. (2010) researchers, however—not one bit. There you can find them, plotting out these measurements across all ages in the graphs of Figure 1, alongside corresponding conclusions about how autistic and non-autistic children have “gained” or “lost” skills over time; there is never the slightest hint that these across-age comparisons are instead a massive instance of placing 6 month-old apples next to 36 month-old oranges. And if you have the slightest doubt about the non-comparability of face gazes over time, think about how much more absurd are the comparisons of directed vocalizations. These are the summation of nonverbal vocalizations, word verbalizations and phrase verbalizations that can be corresponded to face gazes. But tell me, exactly how many word and phrase verbalizations do we expect from a 6 month-old, and in contrast, how many word and phrase verbalizations might we expect from a 36 month-old? Once again, the so-called directed vocalizations of 6 month-olds are demonstrably nothing like the directed vocalizations of 36 month-olds, and yet the researchers act as though giving these measurements the same name is all that is needed to justify their direct comparison.

This research behavior is inexcusable, because after all it was the Ozonoff et al. (2010) researchers who made up the measures in the first place. They as well as anybody would know that comparing these measurements across child ages is ludicrous, and I would have to seriously question the intelligence or integrity of anyone who would insist on doing so. But note that this is precisely what happens when scientists start relying on measurement schemes that stray too far from objectivity—it is not all that large a step from made-up measures to made-up use of those measures. As I said in my comments regarding Christensen et al. (2010), concocted measures are the calling card of a concocted science.

Researcher Bias. There is never much doubt about where this research group stands in its description of autism. Both Ozonoff et al. (2010) and Christensen et al. (2010) are literally littered with phrases describing autism as a social deficit disorder, one best approached through early intervention directed towards getting autistic children to adopt social behaviors more in line with those of non-autistic children. This philosophy precedes any attempt at observation.

Of course, there is nothing unusual or wrong about researchers having a point of view. But when that point of view colors nearly every aspect of their research methodology, and when that point of view causes the researchers to consistently overlook important pieces of information that do not fit neatly into their preconceived notions, then there is indeed a problem. My comments regarding Christensen et al. (2010) already noted that these researchers' dismissive attitude towards autistic-like behaviors in infants and toddlers has caused them to turn a blind eye to the characteristics of these behaviors, and thus the researchers are overlooking valuable information, namely that early autistic behaviors are indeed quite structured, predictable and purposeful, characteristics that would be obvious to anyone willing to take a closer look. But this theme of willful blindness is continued unabated right through Ozonoff et al. (2010). First, note the influence of the researchers' point of view on research design: all the measures these authors decide to use are directed solely towards their theory of autism as a social deficit disorder—face gazes, social smiles, directed vocalizations, examiner ratings of social engagement. This would be a lovely set of statistics if all we were interested in is what the authors want to tell us, but surely a much broader set of statistics would be more helpful if we what we are interested in is what the infants and toddlers have to tell us.

And then there is the curious case of the unused statistic. The researchers start out by measuring a category called gaze to objects, but note the problem already contained within the description of that measure—“infant's gaze is directed toward an object that the examiner is presenting to the child or to another object visible in the frame”—anyone with even a modicum of understanding about autism could tell you that there is a world of difference between attention paid to an object presented by another person and attention paid to an object through independent motivation. But this research group, so caught up in its social deficit model, fails to untangle that distinction, and when its further efforts to fit this already mangled statistic into its thesis fail to gain significance, the authors decide to drop all further mention of the measure. Thus orientation to objects and structure, potentially one of the more valuable pieces of information that might have been gathered from this study, ends up getting so messed up by researcher bias that there ends up being no information at all. This is clearly a disservice to science, and a disservice to autistic individuals.

It is easy to see what one wants to see, but the trick in science is to overcome this tendency long enough to see instead as broadly as one can. Ozonoff et al. (2010) does not rise to the level of that standard.

Questions about Approach. Although Ozonoff et al. (2010) does not spell out its overall approach in great detail or with much clarity, one can still piece together enough information from its pages to realize that what was prospective about this study was the gathering of much raw data from a rather large group of participants, while what was retrospective about this study was the harvesting of subsets of this data—as well as subsets of participants—from the initial study group. Of course, this approach raises some key questions about the timing and purpose of various study technique decisions, but these questions go largely unanswered.

I would not mention this but for the fact it must be realized that the circumstances of these at-risk infant studies, as well as the circumstances of the researchers who have been entrusted to conduct them, by necessity invite greater scrutiny. Lists of researchers given the means to conduct at-risk infant studies reveal a consistent and like-minded set of names: names such as S. Rogers, S. Ozonoff, M. Sigman and G. Dawson are associated with these studies again and again. These are researchers who are close colleagues, and who have built careers around a similar social-deficit view of autism, and who are holding mostly high-paying positions at organizations that espouse nearly identical views of autism, and who have been associated with a self-promoted and perhaps proprietary intervention technique (the Early Start Denver Model); so I do not think I am revealing any state secrets in suggesting that this group of researchers might have a vested interest in having the results of their at-risk infant studies turn out in a certain way. There is nothing necessarily sinister in this, and I certainly do not see any evidence of fraudulent results, but under these circumstances, and given the rather narrow focus of both study methodology and study results we have been seeing so far from this group, I think some healthy skepticism and a polite call for greater transparency are certainly warranted.

And I would also think the autism research community might want to reconsider the wisdom of entrusting such a new and potentially valuable line of research to such an homogeneous-minded set of researchers. While there is no easy way to eliminate conflicts of interest entirely from the autism research community, at the very least, if we had some competing interests engaged in conducting some of these studies, we might be more successful in broadening our view.

Allow me to borrow a page from these researchers' storybook and suggest that early diagnosis of their autism research disorder is actually a good thing, because it opens the door to some early intervention. The intervention need not be all that intensive in this case—I think some straightforward occupational therapy will do. For instance, we might try a few sessions where when the researchers attempt to invent novel and fuzzy measures by which to conduct their studies, they are immediately re-directed to consider measures a bit more objective, broadly scoped and possibly repeatable. When the researchers begin to perseverate on their biases, we might present them with a series of PECS cards, for instance, that demonstrate how data and information can get easily overlooked when scientists walk around with blinders on. And when the researchers insist on arranging their studies to suit only their particular interests, we might enroll them in some structured play dates—friendship classes, if you will—opportunities for these researchers to practice taking turns, sharing, playing by the rules, opportunities to experience the good feeling that comes from allowing others to express their interests too.

I am half tempted to package this form of intervention and market it under a catchy phrase—say, the Early Start Indianapolis Model. But of course I know I would never get away with such a scheme, everyone would see at once through my ruse. After all, I am only suggesting that these researchers associated with Ozonoff et al. (2010) and Christensen et al. (2010) merely follow what has actually been available to them all along, merely follow the well understood principles of logic, mathematics and science.

Ozonoff, S., Iosif, A., Baguio, F., Cook, I.C., Moore Hill, M., Hutman, T., Rogers, S.J., Rozga, A., Sangha, S., Sigman, M., Steinfeld, M.B., & Young, G.S. (2010). A Prospective Study of the Emergence of Early Behavioral Signs of Autism Journal of the American Academy of Child & Adolescent Psychiatry DOI: 10.1016/j.jaac.2009.11.009

Christensen, L., Hutman, T., Rozga, A., Young, G.S., Ozonoff, S., Rogers, S.J., Baker, B., & Sigman, M. (2010). Play and Developmental Outcomes in Infant Siblings of Children with Autism Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-010-0941-y