A window for early intervention against autism?
November 6, 2013 3:06 PM   Subscribe

Researchers using eye-tracking technology found that 3-year-olds diagnosed with autism looked less at people’s eyes when they were babies than children who did not develop autism. But contrary to what the researchers expected, the difference was not apparent at birth. It emerged when babies were 2 to 6 months old, and autism experts said that may suggest a window during which the progression toward autism can be halted or slowed. Article in the NYT. Also SciAm, etc. Reduced eye contact for autistic babies has been documented previously (e.g.), but this study captures the exact window of the decline.

Here's the abstract from the paper published in Nature this week, worth reading:

Deficits in eye contact have been a hallmark of autism since the condition’s initial description. They are cited widely as a diagnostic feature and figure prominently in clinical instruments; however, the early onset of these deficits has not been known. Here we show in a prospective longitudinal study that infants later diagnosed with autism spectrum disorders (ASDs) exhibit mean decline in eye fixation from 2 to 6 months of age, a pattern not observed in infants who do not develop ASD. These observations mark the earliest known indicators of social disability in infancy, but also falsify a prior hypothesis: in the first months of life, this basic mechanism of social adaptive action—eye looking—is not immediately diminished in infants later diagnosed with ASD; instead, eye looking appears to begin at normative levels prior to decline. The timing of decline highlights a narrow developmental window and reveals the early derailment of processes that would otherwise have a key role in canalizing typical social development. Finally, the observation of this decline in eye fixation—rather than outright absence—offers a promising opportunity for early intervention that could build on the apparent preservation of mechanisms subserving reflexive initial orientation towards the eyes.

While there's much previously on the heartbreak associated with autism, this may go down as a first ray of hope.
posted by RedOrGreen (22 comments total) 7 users marked this as a favorite
I would like to point out that the language used to discuss intervention, which a lot of people are going to read as 'cure' is from someone at another institution, and they were not involved in the study.

One of the actual researchers said they hope it might be further developed for early diagnosis, which is a much more reasonable statement. This has zero impact on anything. I hate medical journalism. So much.
posted by hobo gitano de queretaro at 3:41 PM on November 6, 2013 [12 favorites]

This is a really neat finding! Although the n is small, its still pretty damn impressive for the nature of the population being studied.

As always if any of y'all would like access to any of the research being academically discussed here please feel free to memail me with an email address I can send a PDF to, a link to the abstract of exactly which paper(s) you want, and a promise not to distribute the paper(s) further. It would make me implausibly happy if you were to then return to the thread to share knowledge gained or with questions about the paper, but hey, no worries.
posted by Blasdelb at 4:02 PM on November 6, 2013

hobo gitano de queretaro: "This has zero impact on anything."
While I share your concerns about how this paper is being presented, I think this is a bit harsh. The paper is presenting a really fucking counter-intuitive finding for a disease with an etiology that we are only just beginning to grasp the complexity of. That is not nothing. With confirmation from a larger study, that could also be geared towards looking forward at economically viable ways to conduct screening if it ends up making sense, this could have a real impact on diagnosis and thus treatment. However, more importantly, it gives us clues towards how autism just fucking works on a basic level, which helps everyone working on addressing it.
posted by Blasdelb at 4:10 PM on November 6, 2013 [4 favorites]

I applaud your enthusiasm, but no part of this research is news, much less counter-intuitive, and it really does not change anything. Early intervention was already a big part of autism therapy, in theory, and now we (maybe) have a weak diagnostic sign with a fuzzy to the point of useless timeline. Hell, we already knew that.

This is step 5 of 500, and it was a relatively easy step. We're still crippled by the prohibitively expensive cost of using this information to screen babies for autism. It won't change anything. There's no evidence that an intervention exists to ameliorate the progression of autism spectrum disorders and their symptomology ; no one can even say for sure whether those early signs of autism are reversible or not. They sure as hell don't have a solid proposal to alter the developing brain of a two month old infant, good luck getting that IRB signed.

It's not even an edge case, like testing for Huntington's disease, which is immensely controversial despite being a diagnostic slam dunk.

The sensitivity and specificity here are below coin flipping. Thus, this is a useless development. I know all these dudes camped outside the walls of medicine, your "clinical" neuroscientists, your neuro hyphen psychologists are in a frenzy to someday be as good as the doctors who can make a diagnosis clinically without fifty multiple choice exams, a PET scan and an MRI....I know they're dying for a machine they can use to bill for an autism diagnosis. Too bad.

And for all the thousands of parents who are going to get an email with some breathless 22 year old reporter saying there's an autism cure, this is crass exploitation.

I'd like to point out my own red flag (more like an air raid siren) for bullshit medical wankery, the inclusion of the word promise in the introduction and the word hope in the conclusion.

This distasteful business of selling hope directly causes human misery and pain, it's part of the senseless news cycle of sensationalism, and it makes me sick to have to deal with the fall out.
posted by hobo gitano de queretaro at 4:31 PM on November 6, 2013 [4 favorites]

Puts the stupid antivaxxeers definitively to rest, doesn't it? Not like they weren't, before.
posted by jenkinsEar at 4:40 PM on November 6, 2013

Not so great framing on this post. Autism isn't all about heartbreak, and autistic people (and those of us who support them) aren't waiting for a "first ray of hope." We live lives of hope and heartbreak, challenges and joys, just like everyone else. Also the "disease"/ "cure" terminology is very problematic.
posted by Daily Alice at 5:12 PM on November 6, 2013 [12 favorites]

hobo, are you upset about the research or the way that it's being reported? You dismiss the research as if it's just "step 5 of 500", but steps do need to be taken if we're to advance the knowledge base around autism, or any scientific pursuit for that matter. Are you upset that they didn't definitely find a cause and treatment all in this one study? It seems disingenuous to complain about whether the early signs are reversible or not or whether or not they can alter the developing brain. That's not what this study sets out to find.

At least a few researchers quoted in the article disagree with your assertion that it's not news or that it's a useless development--they seem to think it narrows the window in which they thought it was possible to start showing signs. That's important. No, it's not the end goal, but it is important for our understanding of autism.

If you're just complaining about the reporting, I can sort of understand, but you seem to be just taking shots at everything because you're upset about some people not being that scientifically literate.
posted by thewumpusisdead at 5:17 PM on November 6, 2013 [3 favorites]

"I applaud your enthusiasm, but no part of this research is news, much less counter-intuitive, and it really does not change anything. Early intervention was already a big part of autism therapy, in theory, and now we (maybe) have a weak diagnostic sign with a fuzzy to the point of useless timeline. Hell, we already knew that. "

Except that it points to even earlier intervention, and a clearer diagnostic timeline. There are still huge challenges, but it seems like if you were talking to Galileo, you'd be yelling, "GREAT, SO THE EARTH MOVES! WE'RE STILL NO CLOSER TO THE MOON, FUCKFACE!"
posted by klangklangston at 5:18 PM on November 6, 2013 [12 favorites]

This research seems very interesting but I don't understand what it has to do with early intervention or hope -- that's the part that seems wildly speculative, unsupported by evidence, and designed to appeal to a sensationalist and gullible media.
posted by leopard at 6:09 PM on November 6, 2013

I don't get the constant fixation on eye contact as a meaningful marker of, well, anything. I mean, I get that this is a quick and easy marker for autism in the continuing absence of a gene or biomarker, and better yet one that can be easily noted by a layperson. But in my experience, too many clinicians and therapists keep wanting eye contact to be yet another thing that they want to fix or change with behavioral modification techniques, rather than focusing on the important stuff, like pragmatic language issues, or sensory tolerance training, or self-help skills, or whatever. That is, they intrinsically see avoidance of prolonged eye contact as a deficit rather than a preference or difference, a thing to be fixed instead of worked with.

Do I honestly care that my son doesn't look non-close-family people in the eye that much? Nope, no matter how much I'm "supposed" to insist upon it with him when I watch his interactions with other people (teachers, etc.). I'm too busy worrying about little things like equality for him under the law, especially with regards to his educational options, and why it is that he will use his prodigious memory to phonetically memorize all of "Gangnam Style" and sing it constantly (on key!), but why he still cannot form a grammatically-correct sentence more than five or six words long. Let him look where he wants; we have bigger fish to fry.

His IEP is tomorrow; I might be a little stressed.
posted by Asparagirl at 6:28 PM on November 6, 2013 [8 favorites]

Also, I have to agree that this post is framed really badly. Especially the title: "early intervention against autism"? FFS, do you not get how that's offensive? Autism and various associated non-neurotypical ways of thinking are a core part of the lives and make-up of many people I know and love and/or have worked with (I work in IT). It is not a disease.

News stories about autism or autistics are constantly framed as some quest-like search for "curing" or overcoming something innate, one part mystical search for the sword in the stone and one part Horatio Alger bootstrapping. They rarely include quotations or counterpoints from adult autistics, or organizations representing autistics (like ASAN) rather than the people who make money off treating them like perpetual children (like Autism Speaks). And it's especially loathsome when you realize how many stories are about parents trying to "change" or "cure" or "fix" their children, or how they've Bravely Coped.

Or, to put it another way, go swap the word "homosexuality" for "autism" in this and many other news stories about autism, and see how long it takes before the lightbulb goes on.
posted by Asparagirl at 6:53 PM on November 6, 2013 [8 favorites]

Wow, lots of really fighty responses. I'm sorry about the poor framing re a glimmer of hope, but that's why I quoted the whole abstract from the paper.

I don't understand what it has to do with early intervention or hope.

The research is specifically documenting that for babies that go on to develop ASDs, "eye looking appears to begin at normative levels prior to decline. The timing of decline highlights a narrow developmental window".

Is this a cure? Far from it - and no one is claiming that. All it does it bring us one step closer to understanding the mechanism by which autism spectrum disorders appear to develop.
posted by RedOrGreen at 7:50 PM on November 6, 2013 [2 favorites]

“Documenting that there’s a developmental difference between 2 and 6 months is a major, major finding.”

Melanie Klein laughs.
posted by meehawl at 9:34 PM on November 6, 2013

I am an aide for a nonverbal autistic 18 year old. In the past couple years, I've spent countless hours observing him in every conceivable setting including an Aspergers Inclusion Program at his high school in which he participated. I love this kid as I would my own. I support him in any way that I can and am constantly looking for anything that cracks into his world for even the briefest of moments so that I might better empathize with him.

IANAD and I don't mean to offend anyone by saying this but you will never convince me that he is not afflicted by something that warrants a cure and those who say otherwise need to take a closer look at folks a little further down the spectrum before condemning those who have the audacity to call for a cure to this often debilitating disorder.
posted by hangingbyathread at 10:16 PM on November 6, 2013 [20 favorites]

The research is specifically documenting that for babies that go on to develop ASDs, "eye looking appears to begin at normative levels prior to decline. The timing of decline highlights a narrow developmental window".

What does this have to do with intervention? I mean, it may be the case that you could hold off autism by modifying eye movements during the developmental window, but there is no reason to think that this is likely or even possible.

Discovering that there exists an age T where it is hard to predict an eventual autism diagnosis from behavior and an age T' where it is easier is not exactly dramatic news, although it is obviously scientific progress to flesh out the details. Note that the researchers already had a pretty good non-behavioral predictor even prior to birth (the diagnosis of an older sibling).
posted by leopard at 6:19 AM on November 7, 2013

"Or, to put it another way, go swap the word "homosexuality" for "autism" in this and many other news stories about autism, and see how long it takes before the lightbulb goes on."

No matter how gay you are, you don't qualify for accommodation under the Americans with Disabilities Act. And many people make the same complaints about "suffering" framing about cancer stories.
posted by klangklangston at 8:41 AM on November 7, 2013 [2 favorites]

Homosexuality was considered a medical disorder in the US until 1973, by the WHO until 1990, and arguably is still considered one today in places like Russia -- despite repeated protests from LGBT people that it is not a disease, we are different but not sick, and the majority of our problems lie with people who want to institutionalize us or are obsessed with curing us or from conflicts with pre-existing inflexible social institutions (our access to employment, religious worship, safe education, etc.)...

I think the comparison to the way autistics (and disabled people in general) are treated today is very appropriate, actually.
posted by Asparagirl at 9:48 AM on November 7, 2013

Homosexuality was considered a medical disorder [...] I think the comparison to the way autistics (and disabled people in general) are treated today is very appropriate, actually.

I understand what you're saying here, I really do (homosexuality is not a choice, disability is not a choice) but cancer is not a choice either. I have no urge to change my gay colleagues and friends - they're lovely people; I do have very personal experience with profound disability and I would do anything for a real cure that does not involve charlatans preying on parents' hopes and dreams. I don't know, maybe it's a matter of degree.

In any case, we'll have to agree to disagree on this.

The very best of luck with the IEP meeting - I hope you have a solid team and a supportive school district.
posted by RedOrGreen at 11:01 AM on November 7, 2013

"I think the comparison to the way autistics (and disabled people in general) are treated today is very appropriate, actually."

Yeah, no, it's not at all. Autism has real effects on learning, cognition and accommodations. No one, even when homosexuality was in the DSM, got more time on a test for being gay. I understand the rhetorical point you're trying to make, but the way you're framing it is pretty counterproductive.

I realize that this is coming from a place of love and advocacy for your child, but that seems to be obstructing your ability to use a more accurate and concrete metaphor.

You could make the argument that the way that LGBTQ mental health issues are being handled now is in line with the way that you'd like to see autism spectrum disorders handled in the future, e.g. recognizing different needs within the subgroup, encouraging cultural competency, etc., but that's a different argument than the one you're making now.
posted by klangklangston at 12:05 PM on November 7, 2013

I dunno. This finding sort of excites me.

I've got an actual aspie diagnosis from an actual doctor or two and went through some therapy and stuff so.... I'm not coming from nowhere when I say this.

For me, a landmark event in my young my life was when I was working job, and in my performance review the manager said "You're a great kid, but you never look people in the eye and it really puts them off".

It never occurred to me that I didn't ever make eye contact - I just did what I did. But after that point, I started making myself do it. It was super hard - how much, how long, left eye or right eye ? It's still hard for me - fills me with anxiety and dread just to think about it sometimes. But a huge part of my ability to "pass" as neurotypical is based on that alone.

After that day - my life got a whole lot easier. I've had girlfriends and good jobs and lots of success all attributable to that one lesson.

If they can detect and intervene earlier - I just wonder what my Jr and Sr high school life would have been like if I could have fit in better.
posted by Pogo_Fuzzybutt at 12:24 PM on November 7, 2013 [2 favorites]

I keep waffling on posting here because even though I'm no longer at the job where I used to help run this kind of research, I probably can't say too much about it. But I will note that when researchers talk about this kind of finding leading to interventions, they're not really (or at least not only) talking about interventions about eye contact / social interaction per se.

At that age, eye contact isn't just about social interaction. It's about coordinating joint attention with the other person - dad says "doggie!" and chances are his eye gaze is shifting between the baby and the dog. A neurotypical child catches and follows that eye gaze, and begins to put some pieces of the world together about sounds and the objects/people/animals they mean, and starts to understand language. A neurotypical baby at that age, if you show him or her pictures of animals that form a category (lots of different dogs and cats, for example), focuses her eye gaze pretty well on the specific things that make or differentiate those categories, and starts to understand the world around her.

If an infant isn't coordinating eye gaze with people around her, and isn't using her visual attention in the same way as people around her, she's missing out on some possibly important information about the world, and it can delay development in a lot of different areas beyond what people typically think of when they're thinking about eye gaze in older children and adults with autism.

The kind of interventions things like this might eventually lead to aren't necessarily about 'fixing' the eye gaze, they might just as easily be about figuring out how to work with the baby's preferences to get the information about understanding the world to her a different way that works for her, instead of requiring her to come to the information in a way that isn't automatic to her.

It's true that this sort of thing is a very very long way away from being anything like an intervention or a diagnosis, though. And that researchers and the media do not talk about this stuff the way I wish they did.

(Disclaimer: The research group I worked with did this kind of work, but was not one of the groups cited here. I can't necessarily say anything about these specific studies, or what these researchers mean when they say 'intervention.')
posted by Stacey at 6:27 PM on November 7, 2013 [4 favorites]

The IEP meeting went great, really great, and I am still in happy shock. The assessments were spot on, the team was super-nice, and responsive to input, and we got everything we asked for on the first try: recognition of dual eligibility categories (AUT and SLI), mainstream placement with regular academics, a full-time aide, with pull-outs for speech and social skills. I almost burst into tears at lunch afterwards from relief, and I am not usually a crier at all. Thank you for listening and I'm sorry if I was a little crabby before.
posted by Asparagirl at 9:43 PM on November 7, 2013 [6 favorites]

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