11/10/2014

What is joint attention, and are we defining it wrong?

Most humans have an important skill: the ability to share attention.  That is, they can pay attention to the same thing, knowing that the other person is also attending to and thinking about it.  The ability to share attention with another person enables all sorts of other activities, such as having a coherent conversation, or working together to put together a puzzle or construct a house.  It may even help babies learn language. When parents name an object in the environment, babies are more likely to understand the referent if they are paying attention to the same object as the parent.  Researchers call the act of sharing attention "joint attention." Not surprisingly, they find it to be an integral part of social and language development in neurotypical people.  They also find it to be delayed or absent in young autistic children, and theorize that this may cause all sorts of social and language delays.

When you define an important concept in psychology, you must decide how to measure it.  Psychologists who study social and language development have generally settled on one, highly specific definition. A person has joint attention if they can look back and forth between another person and an object, and lacks it if they cannot.  Notice that this definition focuses on only one sense (vision), and on a highly demanding motor skill: the ability to rapidly move one's eyes between two things.  

Above: A boy engages in joint attention with his mother under this definition. He looks at her, sees she's looking at the toy, looks at the toy, and understands that he and his mother are looking at the toy together.

The advantage of this definition is that it is a common way that people share attention (in the U.S., at least), and it's easily measured when you bring people into the lab.  The disadvantage is that when researchers start to identify this operationalization of joint attention with joint attention itself, they ignore the myriad other ways people can share attention.  This may not matter much when considering typical development, but it definitely matters when trying to explain why autistic people have trouble sharing attention.

Two researchers, Morton Ann Gernsbacher and Chen Yu, have written two very different critiques of why joint attention should not be considered synonymous with alternating eye gaze between another person and an object.  Morton Ann Gernsbacher's theoretical paper1 explains that such a theory of joint attention cannot explain how people share attention in many of the world's cultures.  Chen Yu's experimental study2 indicates even the typical research subjects, middle-class U.S. toddlers, rarely coordinate joint attention through alternating eye gaze, and instead do so through other means. 

Vision isn't the only way to share attention
Akhtar and Gernsbacher (2007) lay out a variety of other ways that children and parents in other cultures share attention.

In some cultures (e.g. Kaluli people in New Guinea, Palestinian families in Israel), babies are not only constantly held but are held facing outward, rather than face to face.  This can occur when babies are carried in the mother's arms, on her shoulders, on her back, or in her lap.  As a result, these babies get very little face-to-face experience with their caregivers compared to U.S. babies.

However, in such non-Western cultures, mothers interact with their babies less through eye contact and talking and more through touching and holding.  These babies' early social engagement occurs through other sensory modalities more than through vision.  Thus, one would expect shared attention to develop out of the other senses more than, or earlier then, it would develop out of vision.

When babies are held, they adjust to the movements of the person holding them, and they're sensitive to changes in posture very early in life.  Changes in the caregiver's posture can convey similar information to changes in their gaze direction--a caregiver is likely to lean towards something they are focused on or interested in.  Thus, babies in these low-eye-gaze cultures have access to the same information that U.S. babies get from eye gaze, but they get it from a different sensory modality.

In addition to postural changes, other tactile cues may be important for establishing shared attention.  If a child sits in his mother's lap while they both handle a toy, he can tell from her posture, touch, and hand movements that she is attending the same toy.

Blind children do not utterly lack the ability to share social engagement and attention with others, as would follow if joint attention were truly nothing but the alternation of visual attention.  Instead, they do so through nonvisual modalities instead.  Caregivers also provide tactile cues that direct the child's attention and cue them to engage in intentional communication.  They use touch to get the child's attention, either before signing in the child's visual field, or simply to maintain contact when one partner has looked away. 

In short:
"Although it is possible that gaze is the primary sense for typically developing, sighted infants in Western middle-class contexts, we cannot assume that gaze is primary without exploring other senses and other populations. By examining variations across cultures and across typical and atypical development, researchers may uncover multiple pathways to achieving social engagement and intentional understanding of others' behaviors."
Alternating gaze may not be the best measure of shared reference
Both Gernsbacher and Yu argue that even for sighted U.S. babies, gaze alternation may not be the best measure of shared attention.

To display joint attention, it's not enough to be looking at the same object as a parent.  A child must also gaze into the caregiver's face.  We've already seen one problem with this--that babies raised in other cultures with less eye contact will be unlikely to do so.  Another problem is that the child might look up at the caregiver for reasons other than trying to share attention.  They might be looking for comfort, if anxious in the unfamiliar laboratory setting.  Or, they might be looking for information, when confronted with odd and ambiguous laboratory toys.  

Furthermore, even U.S. babies who appear to be following eye gaze may not actually be doing so. Changes in gaze direction are usually accompanied by changes in head orientation, body posture, and voice direction, all of which come together to indicate the person's direction of attention.  Studies of joint attention that define joint attention as alternating eye gaze do not necessarily attempt to separate gaze cues from these other visual and auditory cues--which may be the truly informative ones for babies. 

Enter Chen Yu's study, which uses sophisticated real-time measures to determine how U.S. toddlers playing with their mothers really do share attention. These researchers have an innovative procedure: in addition to using overhead camera to provide a third-person view of their behavior, they have mothers and babies each wear head cameras with built-in eye-tracking equipment so that researchers can literally see the world from each participant's point of view.

Here's what the setup looked like:

They brought in seventeen 11-15 month olds and their parents for a play session in the laboratory. There were six toy objects at the table, displayed in sets of three, with which the pair could play freely. As seen above, the room was white and minimally distracting, which could be a strength or weakness of the study depending on your point of view.

Researchers measured frame by frame where the babies looked, where the parents looked, and when both shifted to look at a new object, which partner led and which one followed.  They suspected that social coordination would involve babies and parents looking at the same object at the same time. If one partner looks at a new object, to maintain coordination, the other will soon follow, but they might do so without making eye contact.

That was, in fact, what they found.  Babies and their parents frequently looked at the same object (about 33-42% of the time, depending on the measure), sharing over 23 bouts of joint attention per minute by one measure.  Yet babies rarely looked at their parent's face (about 5 times per minute), certainly not often enough to coordinate their looking behavior with parents.  Indeed, babies did not consistently look at a parent's face when following their gaze to an object. (It's important to note that babies and parents did look at each other's faces at times, just that this was rare and did not seem to relate to their coordinated looking at objects. Also, parents did frequently look at the child's face and used this cue to follow their child's attention. Children just didn't do the same with the parent).

So what cues were babies using to share attention with their parents?  Parents or babies were holding an object almost all the time, and hand cues overlap well with eye gaze cues.  Babies tended to look at the hands of whomever was acting on the object, whether that was themselves or their parent.
Above: Gaze and joint attention data from Yu & Smith (2013). a,b) Comparison of where child and parent were gazing, showing that both were often looking at the same thing; that parents looked at the face more than children did; and that children maintained gaze fixation longer than parents, overall (perhaps related to slower attention shifting in this age group). c) and d) are two different ways of measuring the synchrony between child and parent gaze. e) isn't important for the purposes of this post, but it compares the cross-recurrance of parent-child gaze to a random baseline, where the x axis represents time.
   
Why does it matter how we measure shared attention?
Since Simon Baron-Cohen proposed3 that autistic children's language delays stem from their inability to alternate joint attention between another person and an object, a line of autism research investigating the relationship has arisen, based on this assumption. But if joint attention is not identical with triangulated eye movements even in typical development, then our explanations for disabilities in autism rest on a faulty foundation.  If this misinformed research informs interventions, then much effort may be spent trying to teach triadic eye movements that may be painful, or even impossible for young autistic children (given their difficulties with rapid eye movements in general). Efforts would be better spent developing ways to teach language skills and desired social behavior using more accessible cues.

Stigma also arises when we assume that a person who cannot triangulate eye movements between a person and an object also cannot share attention with another person. From here, people often make the leap to claiming that autistic children cannot be emotionally engaged with others or realize that other people have mental states, too, which leads to viewing them as alien at best and sociopathic at worst. These conclusions do not follow, of course, but given the difficulty even researchers have with recognizing that, it may be best to emphasize the distinction between the ability to perform a particular pattern of eye movements and the ability to share attention.

References
Nameera Akhtar & Morton Ann Gernsbacher (2007). On privileging the role of gaze in infant social cognition. Child Development Perspectives 2, pp. 59-65.
Chen Yu & Linda Smith (2013). Joint attention without gaze following: Human infants and their parents coordinate visual attention to objects through eye-hand coordination. PLoS ONE 3, e79659.
Simon Baron-Cohen, Dare A. Baldwin, & Mary Crowson (1997). Do children with autism use the speaker's direction of gaze strategy to crack the code of language? Child Development 68, pp. 48-57.

10/24/2014

What should a blogger do with their old posts when they change their mind?

I recently reread some old entries from 2009 and winced.  I still stand behind the main ideas of these posts, but would now express them very differently.

For one, my attitude towards autism and other disabilities has changed immensely since beginning this blog.  When I began, I was just starting to read both autism research and blogs by autistic people and their parents.  Although in the abstract, I thought of disabilities as traits that could be positive, negative, or neutral depending on the situation, I viewed autism in particular as entirely negative, as a source of disability only.  This perspective came from watching my brother struggle with the disabilities themselves, the way others treated him as a result, and the anxiety produced by both.  I saw his positive traits--his brilliant, independent mind, his sardonic humor, his sense of justice and compassion for others--as completely unrelated to autism.  They were just part of who he was.  But I didn't see autism that way.  As Zoe Gross would put it, I was still partially seeing autism as a sort of add-on, like the detachable cape on a Magneto action figure.  Granted, I was seeing it as an add-on that affected the way people perceive, move, think, and feel in various ways, but I still saw it as a basically negative add-on.  When I first started reading autism research (the first papers I read were from the Yale group), a lot of it rang false, and the coldly clinical writing style made me wonder if the writers knew and loved anyone autistic.  But the deficit-focus and deficit-language used didn't bother me yet--I just thought that they were focused on the wrong disabilities and were too far removed from the people they studied.

Then I learned more about the up-sides of autistic ways of perceiving and learning.  Autistic people can quickly hone in on details within a complex visual display.  They have reduced attentional blindness.  They can better perceive and appreciate pitch in music than most.  They can learn challenging skills like reading without being taught, often at a young age.  They're immune to various illusions, including the one where moving triangles appear to carry out intentional actions like "chasing." And it's not like these are anomalies unrelated to the disabling aspects of autism, either.  These positive traits are likely related to the traits that are disabilities.  A bias towards focusing on sensory details can be positive or negative depending on whether the situation demands perceiving the details (e.g., when drawing) or the configuration (e.g., when perceiving faces).  The ability to learn rapidly through self-teaching is the flip side of a difficulty learning from being taught by typical educational methods.  Lacking the neurotypical mind "bug" of perceiving everything as intentional could contribute to missing social cues.  And you can flip it the other way, too--disabling traits come with up-sides in the right situations and with the right support.  Thus, parents, teachers, clinicians, and researchers have an ethical imperative to seek out and build on the positive. 

So now, I would talk about autism very differently.  This poses a problem: should I edit the posts to bring them in line with my current understanding, or leave them unchanged as a testament to the process of change itself?  Perhaps I should edit them, as the technically-savvy can find old versions of most webpages anyway?  What do you think?  What would you do--or, if you've had a similar change in perspective while blogging, what have you done?

9/22/2014

If "X Changes the Brain!!!", When Should We Care?

In a post catchily titled "Warning: This Post Will Change Your Brain," Neuroskeptic describes media coverage that breathlessly reports that a single dose of an antidepressant changes the brain.

As Neuroskeptic points out, evidence from brain damage supports the idea that everything the mind does involves corresponding brain activity.  Therefore, we should expect, at some level, that everything we think about, do, or perceive will change the brain in some way.  There are a lot of philosophical positions you could take that are compatible with this notion--that "the mind is what the brain does," that "the mind is the brain," that "the brain causes the mind to do stuff," that "the mind and the brain just happen to perfectly parallel each other," and so on. Regardless, if something is happening in the mind, then something must be happening in the brain, too. Therefore, the mere existence of a change in the brain isn't necessarily headline news. Neuroskeptic has a great example of trivial brain changes we experience every day:

"Every time you open your eyes, for example, widespread changes in your brain activity result. But every time you close your eyes, these changes are reversed."
Above: "Sleep changes the brain?!  I'd better not sleep any more, then!"

Given all the headlines with titles like "New brain study explains why people do/like/think X," journalists do seem to believe that the brain either is or causes what happens in the mind.  So if they really believe this, they should also recognize that mind changes necessarily involve brain changes, so not every brain change is likely to be exciting or important.

So if some brain changes are trivial, how are we supposed to evaluate whether a change reported in a news story should matter to us?

It may not always be possible to tell, given either the limitations of the study or the article reporting on it.  But here are some questions one can ask:

1) At what time scale does the brain change?
Brain plasticity acts at two major time scales.  One, on the order of milliseconds, involves changes in the pattern of neural firing, and the biochemical processes that affect it--neurotransmitter release and the like.  Different neurons in your visual cortex fire when you look at a perfectly vertical line versus when you look at a perfectly horizontal line, for example.  Different assemblies of neurons will fire when you look at (or think about) a cat and when you look at (or think about) a dog; or when you smell Lysol vs. your grandmother's cookies.  And each time you think about something new, the pattern of neurons that fires changes again.  These changes are so fast that fMRI is too slow to catch them.  On the other hand, over years, memories form and solidify through changes in the strength and structure of synapses.

2) How long does the change last?
Brain plasticity at the millisecond scale lasts as long as the thought or behavior it signifies. Long term potentiation--the brain changes that enable memory formation--can potentially last as long as an individual lives.

3) What sort of change is it?  How big is it?
The birth of new neurons and the creation of new synapses is a big deal. For example, a major factor in developmental changes is a proliferation of synapses in a particular brain region, followed by a pruning of the synapses that turn out not to be useful.  Some regions, such as primary visual cortex at the very back of the brain, both proliferate and prune earlier than others, such as the frontal lobe, and this has real behavioral consequences.  Long-term changes in the pattern of short-range and long-range white matter connections in the brain also seem important, as do changes in the functional communication between brain regions that they enable. Look for evidence of large, long-lasting, long-time-scale changes of this sort.    

4) How and why does the change happen?
This is really a question about the mechanisms of the brain change, which, for a neuroscientist, means understanding its effects at all levels, from the molecular up to the whole brain level.  But a layperson can approach the question in a less technical way.  Suppose the brain change is caused by a drug or therapy.  Do these changes simply reflect the transient action of the drug or therapy, and end once the patient is no longer in treatment?  Or does the drug or therapy change the brain in some sort of meaningful way that persists even when the patient is no longer receiving treatment?  For example, people helped by cognitive-behavioral therapy for anxiety may develop habits of examining and correcting their thinking that become so effective that they no longer needs the therapy, because they have been trained to provide their own.  One might expect to see a long-lasting, long-time scale brain change of one of the sorts described in Question 3.

5) What is the real-world, behavioral consequence of this brain change?  Is there one at all?
As Dorothy Bishop points out, teachers don't really care if a dyslexia intervention changes the structure or function of the brain in some way; they care if it teaches dyslexic children to read faster and more accurately, and if this improvement lasts.  A depressed person evaluating possible therapies wants to know if changes in the brain reflect an actual reduction in depression symptoms.  In cases like this, brain changes are interesting because they may inform us about how the behavioral change occurs, but the real measure of interest is behavioral, not neurological.
 
Next time you read a headline about how something changes the brain, keep these questions in mind and ask yourself what sort of brain changes are actually involved.  The reality may be less exciting, or terrifying, than it first appears.

9/15/2014

An Open Letter to Issy Stapleton

Dear Issy,
I don't know if you have free access to the internet, or if you'll ever see this.  But I wanted to tell you something.

I can't even imagine what it's like to live knowing that your mom tried to kill you.  That would traumatize anybody.  Worse, to have to listen to her tell the world that it was your fault, that you didn't deserve to live, and having famous people like Dr. Phil agreeing with her.  Well, I know it hurts, and it's probably infuriating, but I want you to know, it's not your fault.  You don't deserve this. No one does.

Please know that there are a lot of people who support you, who want the best for you, who wish we could protect you.  A lot of people are trying to make the world see that what your mom did to you was wrong.  We couldn't help you, but maybe we can stop it from happening to another child.

And Issy, you're not alone.  There is a whole community of people affected by autism who are very different from your mother.  There are autistic adults* who talk to each other online and meet in person.  An incredibly diverse group of people, many of whom were called "difficult" and treated horribly when they were children, but who now are friends and support each other.  There are parents of autistic kids who treat them kindly and want to understand them, who don't see their children as a burden.  There are siblings, like myself, who know their lives are infinitely better because of their autistic sibling.  There are professionals who actually care about the happiness of the people they work with, not just about making them look "normal."  We're all here waiting to welcome you.

With love,
Emily "Mosaicofminds"

*I don't know if you prefer "autistic" or "with autism" or if you care one way or the other.  This is the term I use, but please fill in whatever you prefer.

9/10/2014

Want to learn how something works in psychology? Make it up!

(No, I don't mean that you should invent numbers and call them experimental data, although some people have done that).

There are a lot of theories psychologists have been unable to prove, either because they lack the control over the world necessary to test them, or because it would be unethical to do so.  For example, the nature/nurture problem would be a lot easier to solve if one could separate twins at birth and assign them, say, to a "learn a spoken language" and a "learn a sign language" condition, or an "authoritarian parent" and a "laissez faire parent" condition.  But, since they can't do such things, psychologists have come up with a creative alternative.

They create artificial versions of the things they want to study.

Want to know how people learn a language?  Make up an artificial language, change the parameters of its grammar and other qualities in specific ways, and watch how people learn it.  There are a number of studies that have used invented artificial languages to study language learning in kids and adults.  On a smaller scale, studies routinely examine toddlers' word learning by asking them to learn the names of toys or unfamiliar household objects--names like "blicket" or "dax."

Want to understand how we learn to recognize specific types of objects, such as faces?  One research group invented little creatures called Greebles. They trained people to recognize individual Greebles and categorize them into families.  They varied what methods were used to train people to recognize the Greebles, how participants were tested, and various other parameters in order to find out more about the learning processes involved.  They also observed (using fMRI) how learning to recognize these artificial objects changed activation in a specific area of the brain important for object recognition.


Above: Greebles, from Isabel Gauthier's paper in Nature Neuroscience.

My own lab even used 3D printers to create Greeble-like creatures for children to play with while learning (Sorry, no pictures available at present).  Doing so allows them test whether the experience of touching and looking at the Greebles from different angles helps children learn them.  They also investigate whether it matters exactly how children explore the objects.  There are families of Greebles living on my desk and they are adorable. (And these are just the most appealing of a wide variety of artificial objects my lab has used to study how young children learn).

Other than writers and video game designers, how many people in other fields can say they made up a language or a new type of creature?  How many can say they did it for science?

9/09/2014

How do developmental psychologists think?

[The basic structure and ideas for this post come from a developmental seminar I'm taking with Dr. Bennett Bertenthal at Indiana University.  I'm sharing these concepts more broadly because not everyone has access to a class like this, but anyone interested in child development can benefit from understanding the thinking style and assumptions of the people who research it.] 

A developmental psychologist is someone who researches how people's minds change over their lifetime.  Most study babies, children, or adolescents, but some focus on old age, and they could also investigate parenthood, middle age, or emerging adulthood.  Developmental psychologists care about life stages, how we change as we transition from one to the next, how we change within a life stage, and conversely, what about us stays the same as we move from one stage to another.

Above: A developmental psychologist playing with a child.

Developmental psychologists are concerned with processes of continuity and change rather than in particular things the human mind does.  In this respect, they are different from some other sorts of psychologists, who are defined by the functions of the human mind they choose to research.  (I.e., cognitive psychologists study thought and perception, personality psychologists study personality, and social psychologists study group behavior and influences).  Developmental psychology, as a field, is concerned with all these areas of the human mind. Even a developmental psychologist who focuses on cognitive psychology topics--as I do--will have some familiarity with personality and social development.

First, I'm going to lay out some assumptions developmental psychologists make. Then I'll list some big questions they like to ask.

Assumptions
1) Gene Environment Interactions
While the nature-nurture debate is at least as intense among developmental psychologists as elsewhere, they have a unique perspective on it.  They argue that you cannot explain human behavior with only genes or only experiences.  Instead, they come together in a complex way, with different results than you would get from genes or environment alone.  They claim that the interaction between genes and environment resembles that between vinegar and baking soda.  Vinegar and baking soda are each inert, but come together to make an explosive reaction.  Similarly, genes and environment come together to create an outcome--like personality traits or intelligence--that neither would have produced alone.

The least controversial interaction is probably height.  A large amount of variation in people's heights is genetically determined; tall people tend to have tall children, short people tend to have short children, and siblings tend to have similar heights.  However, nutrition determines whether people will grow as tall as their genes permit them to be.  For this reason, my grandparents were taller than my great-grandparents, and my parents were taller than my grandparents (and the same will likely be true for you, as well). However, improvements in nutrition seem to have plateaued, and so has height; my generation (millenials) is the first in some time not to exceed their own parents' height. Notice that the genetic relationships here (parent to child) are constant across the generations from your great-grandparents to yourself, but differences in environment (nutrition) produce large differences in height.

More complicated and controversial are theories like the Orchid Hypothesis, which posits that different people are differentially reactive to their environments (whether these are good or bad). As far as I know, this theory is still new and not completely accepted, but it's based on research on stress and resilience that is widely accepted.  It's pretty well known that some children who have suffered abuse and neglect will have worse life outcomes than others, and that one factor affecting this is differences in specific genes.

2) Developmental Trajectory
You don't have to be a developmental psychologist to notice that different individuals develop at slightly different rates.  For example, some kids are early talkers and readers and remain ahead of their peers in language skills; other children are slower than their peers in developing language and reading skills. Some kids are taller than their peers from an early age, and maintain this status over time, while others start out short and remain that way.  More interesting than that, though, are children who start out behind their peers in a skill and come out ahead, or vice versa.  For example, Einstein, though a late talker, developed perfectly adequate speaking, reading, and writing skills by adulthood, and some late-talking children today follow a similar pattern.  Meanwhile, some children with precocious academic skills and high IQ scores in preschool, kindergarten, or first grade, may perform more like their peers by third grade (for this reason, experts on gifted children tend to recommend getting one's children IQ-tested at 6 or 7 years old). Children's rate of development of a skill can change, both relative to themselves at earlier ages, and relative to peers of the same age.  Basically, when developmental psychologists think about growth, they imagine a line graph, where the steepness of the slope of the line represents the speed of development, and changes in the slope represent changes in the rate of development over time.

Developmental trajectory is especially interesting in two cases: when comparing typical with atypical development, and when comparing outcomes for different individual children.

For example, language development often follows a different trajectory in autism than in typical development.  Speech is often delayed.  Also, the rate of growth may seem to slow down for a while, stop entirely (what developmental psychologists call a "plateau"), or even reverse ("regression" or loss of language).  On the other hand, language development may continue longer in autistic people than in neurotypical peers, with language skills sometimes improving into adulthood.  And of course, since autism embraces people with a wide range of characteristics, you will find autistic people with pretty much every imaginable trajectory of language development.  There have been lots of recent studies that attempt to find subgroups of autistic children with different trajectories, in the hopes of predicting who will have the best language outcomes, and why.

Developmental trajectory is also important when comparing different individuals from the same population.  For example, some late talkers eventually catch up with their peers in spoken vocabulary, while others do not.  Some developmental psychologists spend a lot of time trying to figure out why these children differ, and what can be done to help the persistently-delayed group catch up.

3) Developmental Cascades
While people can and do grow and change throughout their lives, earlier experiences profoundly shape our abilities and choices later on.  The influence of earlier upon later development is called a "developmental cascade."  A better term would probably be "developmental avalanche."

For example, let's say you're looking at vocabulary size from age 3 to age 5.

Age 3 vocabulary size has an effect on age 4 vocabulary size.
Age 4 vocabulary size has an effect on age 5 vocabulary size.
Age 3 vocabulary has an additional effect on age 5 vocabulary size.

So you have a sort of snowball where initial vocabulary has both direct influences and indirect ones, via vocabulary at intermediate ages. It's like a small snowball that hits more snow and becomes a bigger snowball, which hits more snow and becomes an even bigger snowball, and so on.  Eventually, small differences between people early on can lead to big differences later on.

4) 2-Way Interaction between child and environment
Children aren't just shaped by their environment. They can act in different ways, and their behavior in turn shapes the input they get from their environment.  For example, a child who is shy from infancy will be treated differently than a child who is outgoing from infancy.  They may be reproached, or gently encouraged to interact, or pushed hard to interact, or shamed into interacting, depending on their parents' parenting style and values.  This in turn will shape how the child behaves around other people, and whether they become painfully shy and retiring or quietly confident adults.  A child who has been told from an early age that they're smart will probably think of themselves differently, and take different levels of risk in the classroom, than a child who has been told that they're just average, or even dumb.  I'm sure you can think of many more everyday examples.

While the role of children in shaping their environment seems obvious when pointed out, it's very different from how your average parenting book describes children1.  Too often, the paradigm seems to be "push the right button, receive the desired behavior;" there is little focus on the children's reasons for their behavior (good or bad), or on how the children might be pushing the parents' buttons and triggering their own insecurities about parenting or other issues.  Not surprisingly, many of these books aren't written by developmental psychologists.

The four assumptions listed here lead cognitive psychologists to ask a certain set of questions.

Questions Developmental Psychologists Ask:
1) Are some capabilities innate? If so, which ones?
William James pointed out that at any given moment, there are so many shapes, colors, sounds, textures, smells, temperatures, and more that without any inborn means to sort them out, a baby's world would seem like a "blooming, buzzing confusion."  I think most developmental psychologists accept that at the very least, babies are born with some basic learning mechanisms and an inclination to observe and learn about the world.  But they differ on how much "software" babies come with.  Some people think we're born with (tacit) knowledge of all the grammatical rules of human language, a basic understanding of how objects move (e.g., that objects fall), and/or a set of basic concepts about other people (e.g., that they have minds and intentions).  Others think that we develop these concepts early in life, but aren't born with them.  This debate has led to a lot of interesting research on what babies understand about people, things, quantities, and more, and is far from being resolved.

2) Are there developmental stages, and if so, how do people transition between them?
Piaget thought there were certain qualitatively different ways of thinking that everyone progressed through in a certain order at roughly the same age, and that was consistent across domains of knowledge.  (I.e., if you are at the concrete operational stage in thinking about the movement of objects, then you must also be at the concrete operational stage in thinking about other people's behavior).  This is a fairly extreme stage theory.  His successors, the Neo-Piagetians, were a little more flexible, particularly regarding different domains of knowledge and individual differences.  However, they still thought that development has discrete steps, like a staircase, rather than continuity throughout, like a wheelchair ramp.  Whether a particular study seems to provide support for stage-like or continuous development seems to depend whether it uses continuous or discontinuous measures of the behavior in question, so this question is also far from being resolved.

3) How do individuals differ in their development?
I think this is fairly self-explanatory.

4) How do changes in the brain contribute to development?
This question is similarly easy to understand--but it's even harder to answer in kids than it is in adults.

5) What develops, and how does change occur?
Let's say that last year, Anna didn't understand conservation of matter, but this year she does, and can pass a Piagetian conservation of matter task.  How exactly is she thinking differently now than she did last year?  How did she get from the understanding she had last year to the one she has this year?  This is a very difficult and abstract question, is probably the most central question in developmental psychology, and is also probably the hardest to resolve.

6) How does the social world contribute to development?
We are constantly observing, imitating, and listening to explicit teaching from other people.  We grow up in cultures that provide us with tools for thinking like language, writing, the abacus, or the internet. Our cultures also determine how we spend our time at different ages, and whether we spend our time more with age peers or with people of all ages.  We interact with various institutions either directly or indirectly, including schools, churches, and governments.  We are assigned to categories of age, gender, ethnicity, religion, and more, all of which come with messages about how a person within our category "should" and "should not" behave.  We also (in general) have innate desires to learn from and connect emotionally with other people, and get them to like us.  All these things shape both what we experience and how we choose to behave.

So next time you talk to a developmental psychologist or read about a developmental study, know that development is all about change--and change is a complicated mass of factors that changes over time and differs between individuals. Their goal is to sort out that complex system.


1 I read parenting books from about 1995, when my brother was a fetus, to about 2008, when I got too busy with college to read them.  So it's quite possible I've missed books from before or after these dates that take a better approach. (And for that matter, I'm glossing over a few exceptional parenting books that appeared during this time, like The Heart of Parenting, which is based on the concept of emotional intelligence, and involves helping kids recognize and verbalize their emotions).

8/22/2014

Eye movements in ADHD: Not a "foolproof" diagnostic method, but interesting and important

Above: Eye movements. Are they really a foolproof clue to ADHD?

Science Daily claims that measuring "Involuntary movement [is] a foolproof indication for ADHD diagnosis." Specifically, they believe it will reduce the rate of misdiagnosis in children:

Attention deficit hyperactivity disorder (ADHD) is the most commonly diagnosed -- and misdiagnosed -- behavioral disorder in American children. Now a new study can provide the objective tool medical professionals need to accurately diagnose ADHD. The study indicates that involuntary eye movements accurately reflect the presence of ADHD.

Unfortunately, the actual study, by Fried and colleagues1, indicates nothing of the sort.2

The study did, in fact, measure involuntary eye movements--specifically, blinking and "microsaccades," small jerky eye movements.

22 adults with ADHD took the TOVA twice, the first time unmedicated and the second time while taking methylphenidate (Ritalin).2  The TOVA, which stands for Test of Variables of Attention, is a common, computerized diagnostic test for ADHD.  While participants took the test, their involuntary eye movements were measured.  The unmedicated ADHD adults made more microsaccades and blinks than neurotypical adults immediately before the onset of the stimulus.  When they took the test a second time on methylphenidate, they did not differ from the control group. The researchers argued that measuring involuntary eye movements is more precise, quantitative, and harder to "game" than many current diagnostic methods, such as questionnaires and self-report.

Unfortunately, this study cannot possibly generalize enough to a wider population to imply anything about diagnosing ADHD in the real world.  First of all, although the Science Daily press release focused on children, and parents' concern about their taking stimulants unnecessarily, Fried's study only examined adults.  Furthermore, the study measured eye movements only during a single specific task, the TOVA.  It's not clear whether the same finding would occur during other tasks, or even at rest.  And of course, a sample of 22 participants may not generalize well to the millions of people with ADHD.

And even if the findings generalize to other ages and tasks, further conditions would need to be met to ensure the method worked in practice.  It would have to be tested in a real-world school or clinical setting, with a large population of people referred for possible ADHD (on the order of hundreds or even thousands).  It would have to successfully distinguish ADHD not only from typical development but from other forms of atypical development--which is much harder.  While most of the hysteria about ADHD misdiagnosis assumes that the misdiagnosed children are "normal" children treated as if they have a developmental disorder, it's probably more common for children to be misdiagnosed as having ADHD because of real symptoms caused by mental illness (such as depression), physical illness (such as sleep problems) or another developmental disability. Furthermore, the method would have to be shown to be cheap, fast, and practical in real-world contexts.  For example, the TOVA is a common diagnostic test among neuropsychologists and other specialists, but to the best of my knowledge, it is less so among pediatricians who may also be called on to diagnose ADHD. If the TOVA is essential to obtaining this pattern of eye movements, the method may not generalize well to all diagnostic settings.

This is not even the first study to identify increased anticipatory saccades as a marker of ADHD.  In a review, Rommelse and colleagues report five others (Castellanos et al., 2000; Mostofsky et al. 2001a & 2001b; Rommelse et al., 2008, & Ross et al., 1994; see reference list).  Bittencourt and colleagues' review described a study by Feifel and colleagues, who tested ADHD adults who went unmedicated at least 48 hours. These participants generated more anticipatory saccades when a task required them to shift their attention from central fixation to a target appearing randomly onscreen.

Furthermore, Richard N. Blazey, David L. Patton, and Peter A. Parks have a U.S. patent for a method of detecting ADHD through saccades, or what they call "angular movements of the eyeball."  Their patent differs from Fried's method in one crucial respect.  Eye movements are measured while the person sits staring at a blank screen, wearing noise-canceling headphones, rather than while doing a demanding test like the TOVA.

So Fried's study doesn't offer a foolproof way to diagnose ADHD, and measuring unconscious eye movements isn't a new way to diagnose ADHD in the first place.  But the paper still offers an important insight, one left unexplored by the Science Daily article.  ADHD adults make more anticipatory saccades than neurotypical adults, and it turns out that anticipatory saccades play an important role in perception and tell us something about the strengths and weaknesses of vision in ADHD.

In order to understand why the finding matters, let's briefly go over the research on what anticipatory saccades do and why they matter.

First of all, a saccade is a rapid, jerky eye movement that brings something new into focus on the fovea, the most sensitive part of the eye.  It is not the only sort of eye movement (there are also smooth pursuit eye movements that smoothly track a moving object already in focus).  However, it is extremely common and essential to vision.  As Michael F. Land explains:

“Throughout the animal kingdom, in animals with as diverse evolutionary backgrounds as men, fish, crabs, flies, and cuttlefish, one finds a consistent pattern of eye movements which can be referred to as a ‘saccade and fixate’ strategy. Saccades are the fast movements that redirect the eye to a new part of the surroundings and fixations are the intervals between saccades in which gaze is held almost stationary. As Dodge showed in 1900, it is during fixations that information is taken in: during saccades we are effectively blind.” 
Saccades can take in varying amounts of the visual field (measured in degrees).  Microsaccades, like the ones in the Fried ADHD study, are generally defined as extending to less than 15 minutes of arc in the visual field.

Even a cursory Google search reveals that anticipatory eye movements play an important role in a variety of tasks at all ages.  Anticipatory eye movements have been used to study expertise in soccer goalkeepers, object perception and expectations for "dynamic visual events" by babies, discourse comprehension in typical adults, sentence processing in adult readers, and the influences of language and knowledge about the world on adults' real-time visual attention.  These lines of research reflect an understanding that anticipatory eye movements are overt indicators of otherwise hidden attention shifts.  It's worth noting that not all anticipatory eye movements are microsaccades like the ones in Fried's ADHD study.  Some are smooth pursuit eye movements (the smooth, rapid eye movements used to track moving objects over a longer period of time).  However, saccades are often used for anticipatory eye movements, and the two overlap in neural areas, task demands, and the cognitive processes believed to be involved.

As Ellen Kowler put it:


"Work over the last 25 years has also converged on the notion that the saccadic system is inherently predictive, using pre-saccadic shifts of attention and signals representing planned saccades to encode the location we are about to fixate, and to prepare visual neurons, in advance, for the post-saccadic image. These predictions may be instrumental in processes ranging from the control of saccadic accuracy (by means of adaptive saccadic adjustments) to the weaving together of discrete glances in a way that gives us the impression of a clear and stable perceptual world despite the continual displacements of the retinal image produced by saccades."
Anticipatory or "look ahead" saccades occur during a variety of real world tasks, including text and sheet music reading, typing, looking at pictures of scenes, drawing, walking over difficult terrain, driving, sports, and cooking. In reading, saccades select a span of 7-9 letters or 1-3 notes for processing.  Typists keep their eyes about 1 second ahead of the currently typed letter.  Sketching involves rapid cycles of gaze shifts between the person being drawn and the drawing.  People instructed to walk in specific, effortful ways will look ahead by 1 to 2 steps.  When steering around a turn, driving instructors look at points their car will not reach for another 2-3 seconds, whereas their students, who have not yet learned to anticipate this way, look straight ahead instead.  Tennis players' saccades anticipated the bounce of a tennis ball by about 0.2 seconds, while cricket players can anticipate the ball by about 0.1 seconds.  When making tea or a sandwich, at the end of each action, the eyes move on to the next object about half a second before beginning the next action.  When there are two objects involved (e.g., a kettle and lid), multiple saccades and fixations must be made between the two objects.  In general, saccades followed by fixations proceed a step ahead of action.  This avoids reliance on visual memory.

All this anticipation is believed to help people do things better.  For example, they help people aim their reaching and grasping movements accurately.  Crucially, these saccades may improve performance on visual tasks and arm movements even when attention is directed elsewhere.

In general, we see, hear, act on, and think about things better when we are attending them.  Therefore, the visual system needs to predict what objects or locations in the visual field will be important and start attending to them before they do anything important.  Anticipatory eye movements are the mechanism for doing this.  As such, extra anticipatory eye movements should be an advantage.  They should increase the likelihood of attending the right thing and perceiving it accurately.  Or, at least, that is the picture presented by research on vision in the general population.

ADHD research describes anticipatory eye movements quite differently.  It describes them as "premature," "impulsive," and a sign of inhibitory difficulties--even when the tasks being studied do not involve inhibition of any kind.

So, is there any real difference between "premature saccades" and "anticipatory" ones, or are they just a negative and a positive label for the same behavior? I asked Sue Fletcher-Watson about this, and it appears that there is a difference, which is only apparent in studies designed specifically to test learning visual patterns. In studies like this, anticipatory saccades reflect an accurate prediction of where a stimulus will appear, based on learning; premature saccades are the eyes' tendency to flick around randomly looking for stimuli when a person gets bored.  Unless a person making premature saccades is lucky, their saccades will have no tendency to land where a new stimulus will appear, so the "success rate" should be measurably lower for premature saccades than truly anticipatory ones.

However, many of the ADHD studies under discussion do not appear to use this sort of learning task. Instead, they measure individuals' control over their eye movements during an experiment that is static and does not encourage or require learning. I suppose individuals could learn in such studies, and their learning could be measured and analyzed, but that's not what these researchers were doing. They might need to reanalyze their data to measure and compare learning in typically developing and ADHD groups. (And perhaps someone should).

Furthermore, I don't think that the ADHD researchers were even asking that question, trying to determine whether ADHD behavior was anticipatory or just premature.  Instead, they seem to be simply assuming "ADHD is a disorder of inhibition, so group differences must be due to an inhibition deficit."  This is an example of biased research, as explained by Morton Ann Gernsbacher--if you take away the labels of the group members, the interpretation no longer makes sense.  It also fails to take into account the more positive picture of anticipatory eye movements painted by the general vision literature.

Researchers on atypical development often say we should take typical development as a starting point, so let's do just that and see what it actually implies for vision in ADHD.

Let's say for the sake of argument we reanalyze the data or do new studies to make sure the eye movements actually are anticipatory--and they are.

Increased anticipatory eye movements in ADHD could have positive effects, which could be viewed either as a simple advantage or as compensation.  The trait may also carry a disadvantage.

When viewed as an advantage, it implies that people with ADHD may be better at noticing and directing their attention to changing and salient things in their environment.3  This ties in well with the theory (described to me by Jeff Gilger's research team) that ADHD vision is well-adapted to dealing with rapidly-changing, highly-salient stimuli, but ill-suited to maintaining attention on static and less motivating stimuli.

When viewed as compensation, extra anticipatory saccades could be seen as a way of increasing the likelihood of focusing on the right things when attention is hard to control by other means.  Anticipatory eye movements could also compensate for lack of visual working memory.  In the general population, people who have to copy drawings or models make lots of saccades to the thing being copied, instead of looking back at the object less and relying mostly on visual memory.  Since children and adults with ADHD may have less visual working memory than neurotypical people, they may need to make even more saccades.

However, there may be a disadvantage to the ADHD pattern.  Remember that we are effectively blind while making saccades or blinking.  The more saccades and blinks a person makes, therefore, the less time they spend taking in visual information from their environment.  This can be a disadvantage when performing a task that requires taking in lots of visual information over a long period of time (e.g., certain sustained attention tasks).

These interpretations of Fried's study are merely my speculations, based on putting aside assumptions about ADHD and instead looking at what we know about how vision works, in general.  So please don't quote them as if they were established research.  Rather, these represent a possible blind spot in ADHD research--and a set of hypotheses we can test.  Even if they turn out to be wrong, we will learn something about the strengths and weaknesses that come with ADHD.

Many thanks to Sue Fletcher-Watson for helping me figure out how to tell the difference between anticipatory and premature saccades and offering encouragement.

1 Interestingly, Moshe Fried himself has ADHD.
2  At least, so far as I can tell from the abstract and media descriptions from the study. This post will be updated when I get access to the full text.
2 Notice the obvious confound: improved performance on the second testing could have been due to practice taking the test rather than the stimulant medication.
3 Note that having an advantageous pattern of anticipatory saccades, which are unconscious and not deliberately controlled, does not preclude difficulty with more controlled eye movements.  In fact, a line of research indicates that ADHD people have difficulty controlling and inhibiting eye movements, just as they do with other behavior.  ADHD could simply involve deficits in controlled, but not necessarily uncontrolled, perception and behavior4.
4 Whether or not uncontrolled ("reflexive") saccades are also impaired in ADHD is still under debate.  Some studies seem to find slower, more variable responses, while others observe no difference from neurotypical peers.

Citations:
Note:  The basic point about the strengths and weaknesses of anticipatory eye movements in normal development can be found in James Enns' The Thinking Eye, The Seeing Brain (one of the few readable, layperson-friendly textbooks I have ever seen).

Other citations reflect a limited amount of time to survey the role of anticipatory eye movements in ADHD and typical development, so they are mostly reviews and are necessarily incomplete.

  • American Friends of Tel Aviv University (2014). Involuntary eye movement a foolproof indication for ADHD diagnosis. Science Daily, 13 August 2014. www.sciencedaily.com/releases/2014/08/140813131055.htm 
  • Moshe Fried, Eteri Tsitsiashvili, Yoram S. Bonneh, Anna Sterkin, Tamara Wygnanski-Jaffe, Tamir Epstein, & Uri Polat (2014). ADHD subjects fail to suppress eye blinks and microsaccades when anticipating visual stimuli but recover with medication. Vision Research 101, pp. 62-72. http://www.sciencedirect.com/science/article/pii/S0042698914001187
  • Juliana Bittencourt, Bruna Velasques, Silmar Teixeira, Luis F. Basile, Jose Inacio Sailes, Antonio Egidio Nardi, Henning Budde, Mauricio Cagy, Roberto Piedade, & Pedro Ribeiro (2013). Saccadic eye movement applications for psychiatric disorders.  Neuropsychiatric Disease and Treatment, 9, pp. 1393-1409. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3783508/
  • F.X. Castellanos, F. F. Marvasti, J. L. Ducharme, J. M. Walter, M. E. Israel, A. Krain, et al. (2000). Executive function oculomotor tasks in girls with ADHD. Journal of the American Academy of Child & Adolescent Psychiatry, 39, pp. 644-650.
  • D. Fiefel, R.H. Farber, B. A. Clementz, W. Perry, & L. Anilo-Vento (2004). Inhibitory deficits in ocular motor behavior in adults with attention-deficit/hyperactivity disorder.  Biological Psychiatry, 56:5, pp. 333-339. http://www.ncbi.nlm.nih.gov/pubmed/15336515/
  • Eileen Kowler (2011). Eye movements: The past 25 years. Vision Research 51:13, pp. 1457-1483 http://www.sciencedirect.com/science/article/pii/S0042698910005924 
  • Michael F. Land (2006). Eye movements and the control of actions in everyday life. Progress in Retinal & Eye Research, 25, pp. 296-324. http://www.cis.rit.edu/pelz/scanpaths/papers/eye-movements-every-day-life-land-2006.pdf
  • Neil Mennie, Mary Hayhoe, & Brian Sullivan (2006). Look-ahead fixations: Anticipatory eye movements in natural tasks. Experimental Brain Research http://www.ski.org/Renninger_Lab/BSullivan/MennieEtAl_LookAheadFixations2006.pdf
  • S. H. Mostofsky, A. G. Lasker, L. E. Cutting, M. B. Denckla, & D. S. Zee (2001a). Oculomotor abnormalities in attention deficit hyperactivity disorder: A preliminary study. Neurology, 57, pp. 423-430.
  • S. H. Mostofsky, A. G. Lasker, H. S. Singer, M. B. Denckla, & D. S. Zee (2001b). Oculomotor abnormalities in boys with Tourette syndrome with and without ADHD. Journal of the American Academy of Child & Adolescent Psychiatry, 40, pp. 1464-1472.
  • Nadia N. J. Rommelse, Stefan Van der Stigchel, & Joseph A. Sergeant (2008). A review on eye movement studies in childhood and adolescent psychiatry. Brain & Cognition, 68, pp. 391-414 http://www.fss.uu.nl/psn/web/people/personal/stigchel/rommelsereview.pdf 
  • N. N. J. Rommelse, S. Van der Stigchel, J. Witlox, C. J. A. Geldof, J. B. Deijen, J. Theeuwes, et al (2008). Deficits in visual spatial working memory, inhibition, and oculomotor control in boys with ADHD and their non-affected brothers. Journal of Neural Transmission, 115, pp. 249-260.
  • R.G. Ross, D. Hommer, D. Breiger, C. Varley, & A. Radant (1994). Eye movement task related to frontal lobe functioning in children with attention deficit disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 33, 869-874.
  • Alexander C. Schutz, Doris I. Braun, & Karl R. Gegenfurtner (2011). Eye movements and perception: A selective review. Journal of Vision 11:5, http://171.67.113.220/content/11/5/9.full. 

7/01/2014

Things You Can Do to Help Disabled People that Don't Cost a Cent (Guest Post)

This list of ways to respect and offer an accessible environment to people with disabilities is reposted with permission from Neurodiversitysci, and includes all comments with attributions.  (Where no attribution is given, the point comes from the original post by Neurodiversitysci; where an attribution is made, it comes from another person).  I've broken the list into a few categories to make for easier reading and corrected some typos.

Neurodiversitysci says, "This list should probably have a huge disclaimer of YMMV [your mileage may vary], since disabled people often have different experiences and live in different social environments with different social barriers. It's pretty much guaranteed some things won't apply to everyone. More importantly, some of the points on the list are based on conditions and experiences I have personally, while others are just based on listening to people."

Also, disabilities (as defined here) include: developmental and learning disabilities (e.g., autism, dyslexia, intellectual disability); chronic illnesses (e.g., MS); mental illness (e.g., depression, Bipolar Disorder, schizophrenia); and physical disabilities (e.g., blindness, deafness, inability to walk).

Respect

  • Do not talk about an obviously disabled person in front of them as if they can't hear you.
  • Do not talk to a disabled person's companion instead of them.
  • Ask permission before touching people, or their wheelchairs or other equipment, even if you want to help.
  • Ask permission before touching people's service animals. "Service animals are just that: animals trained to serve the needs of people with disabilities. Please do not distract them from doing their jobs. If you want to pet them or interact with them, ask their owner!" -Lightles
  • Ask disabled people about their lives and really listen to their answers. (Within reason. For example, asking people personal questions about their sex lives is rude unless you're very close to them and they've communicated they're OK with that).
  • Listen to what they say, whether they are speaking, writing, typing, using text to speech, using a letterboard, using PECS, gesturing, using sign language, or using any other form of communication. People who can't speak can still communicate.
  • Understand that "people with disabilities are, first and foremost, people, not saints or martyrs. We have virtues, faults, interests, dreams, and ambitions that have nothing to do with the things our bodies and minds are or are not capable of doing.  Please remember this and treat us accordingly." -Lightles
  • "Don't assume that disabled people...must have miserable/inferior lives. We are different, not lesser." -QueerAutisticMRA
  • Understand that disabled people don't just need friends, they can be friends. [Inspired by Judy Endow].
  • Stand up for people you see getting bullied.
  • When talking to someone who has trouble speaking or stutters, and takes a long time to speak, please wait for them to answer. Don't keep repeating the question or pressure them.  Yes, if you are like me and your mind is going really fast and you forget what people are saying if they take too long, it can be hard to be patient. Do it anyway.
  • When talking to someone who cannot say a word correctly (or at all), it doesn't help to keep asking them to say the word over and over again until they get it right. It will likely frustrate them, and they may still be unable to say the word; in fact, the stress and pressure might make it harder. [Astroayla].  (This point assumes you're not their speech and language therapist.  Even so, there are probably better ways to handle the situation).
  • A disabled person with intellectual disability who has the academic skills or IQ of, say, a 7 year old, does not actually have the mind of a 7 year old.  They have different life experiences, needs, stages of life, bodies, and so on.
  • Understand that a disabled person's talents, however esoteric, are real, not unimportant "splinter skills."
  • "Do not tell anyone with any kind of disability or illness that it's not real. Nothing makes it more apparent that you don't actually care about or respect a person than to tell them that their illness/disability isn't real...Like I'm going to take the words of some guy I barely know over my therapists and doctors." -Wojojojo 
  • Do not tell a person with ADHD or mental illness that they should not be taking medication. This is a personal decision. Furthermore, since medications often have wide-ranging effects on bodies and minds and unpleasant side effects, most people taking medications have thought through the issue, done a cost-benefit analysis, and decided that functioning better is worth it. Their decision should be respected.
  • Conversely, do not tell a person with ADHD or mental illness who is not taking medication that they should be [Suggested by Lichgem and Shinobody].
  •  Not all disabilities are obvious or visible to the naked eye.  This is true for physical, mental, and emotional disabilities.  Sometimes this includes difficulty with things like standing for a long time, and requires accommodations like using the elderly/disabled seats on a train.  Do not assume that someone you see doing this is faking. [Lawless523].  Also, if such a person, without glasses/cane/wheelchair/etc., tells you they have a disability, accept this and treat them with the consideration you would show to a person with an obvious disability. [Lightles].
  • "Think long and hard before complaining about the "special privileges" people with disabilities get. Yes--the parking places reserved for the disabled are closest to the door of your favorite restaurant, but that's because the people who need the space find walking to be difficult, painful, or impossible. The people who use these spaces would almost certainly rather park further away than have to use a wheelchair." -Lightles


Interpretation

  • Recognize that failure to make eye contact does not necessarily mean someone is lying to you. It could simply be uncomfortable for them.
  • Recognize that unwillingness to go to loud, crowded bars does not necessarily mean someone isn't interested in socializing with you. They may simply find the noise and crowds painful, or be unable to understand what you're saying in that sort of environment.
  • Recognize that a person can need time alone and it doesn't mean they're avoiding you.  It's just something they need so they can function at their best.
  • If a person does not recognize you, do not assume they don't care about you. They may be face-blind.
  • If a person does not remember your name, do not assume they don't care about you. They may simply have a bad memory. [Autistic Velociraptor].
  • If a person does not remember your birthday (or other major names, numbers, or dates), don't assume they don't care about you (or whatever it is they've forgotten). They may simply have a bad memory.
  • If someone has difficulty spelling, or using the appropriate jargon/terminology, do not assume they're stupid.  Some people have difficulty with these aspects of language. You may need to paraphrase some "jargon" for them.
  • Understand that a person can be working incredibly hard to do something and may still not perform as well as you'd like them to, as well as the average person would, or as well as the situation demands. They are still trying, and it hurts when you tell them they're not.
  • Recognize that even if a person is unable to respond in a way you can understand, they can still hear you. Don't suddenly start talking about everything you hate about them, or wave your hand in their face. Instead, talk to them the way you normally would. That doesn't mean using an overly exaggerated "I'm pretending everything is normal" voice, which they may be able to see through even though they can't communicate.  It means talking to that person the way you'd talk to anyone else. Although they may not be able to tell you right away, it makes all the difference in the world. "I cried the first time this happened to me. Even my friends had never done it, up to that point." -Youneedacat
  • Colorblindness affects more than just knowing what color something is. To a colorblind person, colors they can't see will look the same if they have the same degree of lightness/darkness, which can change the level of contrast between things. To a red-green colorblind person, for example, a red rose on a green background can blend in instead of contrast starkly, and the Chicago CTA El map can be hard to understand.  Understand that something that stands out and seems obvious to you may literally not be visible to a colorblind person.
  • Understand that for some people, particularly autistic ones, it may be inappropriate to read more into what a person says than what they literally say. "If I ask you to skip a song on your playlist because there's a high noise in it that bugs me, all I am saying is what I just said. I'm not implying that you should let me pick the music. I'm not dissing your taste. I'm saying there's a high noise in that song that bugs me. That's it, that's the whole meaning." -Jumping Jack Trash
  • "Also, when we ask for clarification on something, please provide clarification. It might be obvious to you what you mean, but it might not be to everyone. In the case of humor, we're not trying to spoil the joke. We might even get that you just said something that is supposed to be humorous, but we don't necessarily know WHY it's humorous. That's why we're asking, so we can get the joke next time." -I Has a Politics


Accessibility

  • Every public place does not need to have loud, blaring music and TVs with flashing screens
  • "For the love of God, don't touch people without asking! It may not seem like a big deal to you...[and] I understand sometimes it just happens, rushing and brushing against someone, but some of this is either intentional or could easily be avoided. Not everyone needs or wants a hug from someone they don't know. In fact, it might be a huge stresser." -Nuclear Vampire
  • If you blog, put bright, flashing images that can trigger seizures under a cut so that people with seizures can avoid looking at them.
  • If a job can possibly done without a person driving, don't require candidates to drive or have a driver's license.  Don't interview candidates and then reject them because they can't or don't drive.  Lots of people with disabilities cannot drive safely, including those with low vision, slow reflexes/response time, and some with autism or ADHD.
  • If you are talking to a deaf person, make it easier for them to lip-read by facing towards them while looking at them, and not covering your mouth with your hands.
  • If you are talking to someone with hearing impairment or auditory processing disorder, it is more helpful to slow down, face them, or rephrase what you're saying than to just speak more loudly.
  • Some disabled people have difficulty understanding nonliteral language such as metaphors and idioms (e.g., "a stitch in time saves nine"). If you're talking to someone like this, try explaining what you mean by these figures of speech, or just avoid them. Also, if nonliteral jokes confuse or upset them, you should avoid them and especially avoid using these jokes on purpose to make fun of them [Antimone Grey].
  • If you're talking to someone who has difficulty understanding nonliteral language, do not use only nonliteral language to convey your point. "Say what you mean...don't use hints, implications, analogies, hyperbole, or metaphor in place of actual information. Whether analogies, hyperbole, etc. can help in illustrating your point depends on the individual; many of us are fine with figurative language in a lot of cases, especially if we have context to place the phrase in. But if you want us to know a thing, tell us the thing itself instead of or in addition to talking around it." -Jumping Jack Trash



Others

  • Don't tell them "but you look so normal!" Or "you don't look like [x]." It will not be taken as a compliment. [Rosslyn Paladin].  But, if they accomplish something you know they were working really hard to do, it's great to compliment them on it.
  • "Don't tell someone they're 'not really ___' because they don't have something in common with the average ___. For example, I'm not bothered by loud jittering noises; in fact, anybody who knows my taste in music knows that I love them, but that doesn't make me 'not autistic' because some people who are also autistic ARE bothered by jittering noises...not everyone with a disability is the same." -Blind Skywatcher
  • "Please don't ask if they are getting better, or will get better." -Little Red Chucks.  Most disabilities and chronic illnesses are permanent, while mental illnesses tend to be long lasting, and even if a person recovers, can recur over the course of a person's life.
  • "Please do not assume that a child's disability is the fault of their parents or carers." -Little Red Chucks.  Except for genetics (e.g., a disabled parent having a child with the same disability) or extremely rare and specific cases, like Fetal Alcohol Syndrome, a child's disability is not their parents' or caretakers' fault. 
  • If someone has a major medical problem, disability, or chronic illness, then just eating some special healthy diet or exercising more isn't going to cure it. It might help, it might hurt, it might do nothing, but the person has probably heard the advice before, and unless you're their doctor, it's none of your business in any case.
  • A person with OCD knows that checking or counting or whatever compulsive action they perform won't really prevent disaster from happening, it's just a compulsion. That doesn't stop them from feeling the need to do it anyway. A person with anxiety may know that at least some of their fears are irrational or unlikely to occur. That doesn't stop them from feeling anxious. A person with trichotillomania may know it hurts them to pull out their hair or pick at their skin, but they have difficulty stopping themselves anyway. A depressed person may know that they would feel better if they got out of their house and talked to people, but that doesn't make them feel any more up to doing those things. A person who hallucinates may know the hallucinations aren't real, but that doesn't make them go away or feel less upsetting. Do you see the pattern? You can't cure people with mental illnesses by telling them they're being irrational or hurting themselves. If it were that easy, they'd have cured themselves already.
  • Telling people they're inspirational simply for living their lives or getting out of the house is not a compliment. It's telling them that you think their lives are so unbearably awful that just living is an inspiration--which is insulting. It's different to tell them you admire them if they do something truly impressive, or that you know is hard for them personally and they worked hard to accomplish it.
  • Accept stimming.
  • "Do not play the "how many fingers am I holding up?" game with a blind or visually impaired person. It's just rude." -Lightles
  • Disabled people having a meltdown look like they're throwing a tantrum or being aggressive, but they are not. People can have anger meltdowns [Blackwinged Rose], but people assume all meltdowns are about anger, and that's not necessarily true--they're often caused by terror.  Having a meltdown means a person has gone into fight or flight. The best thing you can do is remain calm yourself and help them calm down. It may help to keep your distance, keep your voice low and calm, let them retreat to a safe place if they know to do that, or remind them to do so if they forget.  Reasoning with them won't work well because they're unlikely to be able to hear and understand you. The worst thing you can do is start yelling yourself, threatening them, be violent to them, cut off their escape route, or get right up in their personal space.
  • Most of all: even the identical disability affects different people differently. The preferences of the specific person you're interacting with take priority over any generalized rules, including this list! "There's no catch all method to treat every disabled person appropriately to their own desires. Just try to exercise the best judgment you can and ask before assuming. They often appreciate your intentions even if your assistance isn't needed. They're a lot more capable than people give them credit for." -Spud Fuzz

Comments are welcome, and further ideas will be added to this list. Advice relating to physical or intellectual disabilities would be particularly welcome.

5/22/2014

An Open Letter to Jeffrey Howe

Dear Jeffrey Howe,
I read your piece today in Motherlode.  I wanted to comment and speak to you directly, but didn't have an account on the site, so I will write to you here and hope my readers here and on Twitter will share it with you.

I am the older sister of a young man who was diagnosed on the spectrum as a child and has not lost the diagnosis. I am also a cognitive neuroscience researcher in training, and hope to study people on the autism spectrum in the future.

I was pleased to see you listened to the autistic adults who wrote to you--people who share some experiences with your son, and who, if all goes well, he might even resemble some day.  Not all parents are willing to do this.  It's not easy to hear that you might inadvertently be doing something that might hurt your child, and embarrassing to realize that you didn't imagine autistic people might read what you wrote.  But you listened and acknowledged these mistakes, and that takes empathy and integrity.

But I was disappointed with where you ended up.  You said:
"In the same way I hope that the other patrons at our local diner will accept the child doing a headstand in our booth, I hope that autism advocates accept that we require every meager word at our disposal to describe our unique experiences...Let us accept words for the blunt, imperfect tools that they are."*
First of all, please understand: you can write about your child's difficulties, and the effort and expense of raising him, without saying things that autistic readers find dehumanizing and hurtful.  You've already done it, in fact.  You said:

"Last year Finn climbed out his bedroom window, falling two and a half stories, breaking his pelvis and fracturing two vertebrae. He had pushed his stuffed animals out the window, and lacking any understanding of gravity or height, he simply wanted to join them in our yard... 
He used to point to an object he desired, his one concrete method of communication. Now he uses American Sign Language for music and movie and dog and shoe and food and drink and up and help and stop and wait and candy. He is beginning to shake his head for no and nod for yes, and when I look into his eyes I see now that he loves us as fiercely as we love him. He only rarely bites us anymore, or wraps an angry hand around his sister's hair."
A very evocative description of Finn at two points in his life, and no offensive language in sight.

The thing about labels like, yes, "low functioning," is that they are not only hurtful but vague.  What does a low functioning person look like?  A non-speaking child who is constantly hugging, smiling at, and initiating interactions with their parents could be called low-functioning.  So might a child who can speak but has frequent meltdowns, or whose independent living skills are so poor they cannot be safely left alone for long and cannot cross the street unaided.  A child with low IQ might be called low-functioning, but so might an average-IQ child who simply cannot fit into a mainstream classroom or who has all the DSM autism traits to an extreme degree.  Wouldn't it be better to describe what your child is actually like, what he can do and can't do right now--as you've started to do here?  Wouldn't that better achieve your goal of describing what life with him is like?

I should also note that not all the negative words you've singled out ("nonverbal," "impaired," and "low functioning") are all harmful, so your palette is less limited than you may have feared. For example, I've yet to hear anyone object to "nonverbal," which is a simple statement of fact--that a person cannot speak.

Suppose, though, that hurtful labels actually were a sufficiently precise way to describe life with your child.  I still don't think achieving this description is worth the pain it would cause.  Let's compare the costs and benefits.

If you use the language you like, you will be happy at expressing how you feel, and some of your parent readers will feel validated and cheered.  On the other hand, you will have, unwittingly, reinforced views of autistic people that, when acted on, cause a lot of pain.  More directly, any autistic people reading will wince, feel hurt and angry at best and outright traumatized at worst.  Many have some very painful histories with terms you use such as "low-functioning."  They have experienced abuse from therapists and even parents, have been treated as if they weren't "really there," and sometimes been in institutions.  When people deemed "low-functioning" go out in public, others address their nonautistic companions instead of them, or talk about them in front of them as if they weren't really there.  People deemed low-functioning are denied a complete education.  And if they are deemed too "severe" or "low functioning" by too many people, they may get sent to centers of last resort, like the JRC, where they are electro-shocked into submission.

Saying someone is "unable to communicate" or "in their own world" probably doesn't lead to as much outright abuse as "low functioning."  But here's the thing--people unable to speak, with limited gestures, still do try to communicate, through the only means available to them--behavior, such as flopping down in the middle of the floor, or flapping their hands, or biting themselves, or even just screaming.  Not the ideal communication method, we can all agree--but how often do parents, clinicians, or teachers attempt to interpret the meaning of this behavior, and how often do they simply call it a behavior problem and attempt to squash it?  These severely disabled kids, thus, are the ones who are most hurt by words like "unable to communicate," not "quirky Intel programmers."  And people who seem "unable to communicate" don't just communicate through challenging behavior, either.  They communicate through touch--they lead parents to something they want to show them; they gently touch their parents to comfort them.  Lacking the ability to create sentences of their own, they communicate using other people's words--what researchers call "echolalia."  Maybe there are a few people utterly unable to communicate, maybe your child is even one of them, but I would bet that most kids whose parents describe them as unable to communicate are, in fact, trying to communicate, but their atypical signals are being misunderstood or ignored.  I suppose eventually, such kids might give up as they get older and realize they won't be understood, but that's not everyone.  And while autistic kids are often focused on very different things than we are--the toys they're lining up, or the sensory stimuli or special interests that absorb their attention to the exclusion of all else--that doesn't mean they're "in their own world."  In fact, it's dangerous to assume autistic kids are "in their own world" because it's just a step from there to "they're not aware of anything that's going on" and from there, only a step to "it doesn't matter what we do or say to them, because they won't care anyway," and that's when teachers and therapists and others start to abuse.  And if we think autistic kids are "stuck" in their own world, how much effort will we make to integrate them into our schools or public places?  Autistic kids live in the same world we do, however differently they may perceive it.

So if you use words like "low functioning" or "unable to communicate" or "stuck in his own world," you could hurt any autistic people who may be reading, while contributing to the assumptions that make people abuse them and excuse that abuse.  On the other hand, you could please some parent readers in need of validation.  On any reasonable cost-benefit analysis, using expressions like these just isn't worth it, even if they were useful. 

I wish that language were as neutral and unimportant as you make it out to be when you say you hope "that autism advocates will accept that we require every meager word at our disposal to describe our unique experiences...it comes down to tolerance."  You may have noticed that as a parent, most people in the general public see you as an authority on autism.  They may even see you as more of an authority, and listen to you more attentively, than they would an autistic person.  This power to shape opinions means, unfortunately, that every word you say carries immense weight.  You have the power to create a more hospitable world for people with your son's diagnosis--or reinforce the same prejudices that currently make life harder for them.  Look at it this way: your son already carries a burden other children do not, because of his disability.  Does he need to carry an additional burden of stigma and the presumption of incompetence from everyone around him?  It may be hard to lighten the burden of the disability, so it becomes all the more important to ease the burden of stigma.  I have heard calls to stop disagreeing about words in the interests of "unity," but "unity" should not come at the expense of those who are most disabled, and do not have the words yet to speak out against what hurts them.

Lastly, please understand that however "abstract" the distinction between disability and disease may seem for you, this is because you yourself do not have autism and can afford to ignore the issue.  Autistic people do not have that luxury, which is why those who can write and blog discuss the issue so much.  It directly affects their lives and their self-worth.  And from a practical perspective, there is a huge difference between therapy that attempts to make a child look exactly like his peers and therapy that doesn't worry about appearances, aiming only to teach skills.  There's an even bigger gulf between therapy that teaches children to achieve better results with the brain they have and therapy that attempts the impossible task of turning their brain into a very different type of brain.  Dismissing this issue as unimportant would be myopic and unwise.

I hope Finn continues to grow and learn to communicate better, and that his and your lives get easier.  I also hope that he will never feel wounded by what you have said or written about him.

You may also enjoy reading books written by nonspeaking autistic young people.  You might want to start with "The Reason I Jump" by Naoki Higashida, who uses a question-answer format to address questions people often have about what it's like to be him and why he behaves the way he does. "I Am Intelligent," by Peyton Goddard, is a harder and more upsetting read, but worth it, I think.  I personally wasn't crazy about Tito Mukhopadyay's style in "How Can I Talk if My Lips Don't Move?" but it brings his very different perceptual world to life like nothing else, and you'd probably enjoy seeing how his mother, Soma Mukhopadyay, taught him.  My favorite, though, is "Ido in Autismland: Climbing Out of Autism's Silent Prison" by Ido Kedar.  It's telling, I think, that he characterizes his autism as a prison and still seems more hurt by the way others treated him and denied him an education. All are very different from each other and probably from your son, but they offer an amazing glimpse into the world of people who were called "low functioning" and "unable to communicate," and offer a basis for hope and faith.

*By the way, this is a false analogy.  The worse damage Finn's headstand can do to other restaurant patrons, on the single occasion where they see him, is a bit of distraction or annoyance.  Whereas the worst damage certain words by parents can do involves eliciting traumatizing memories of abuse and reinforcing the exact prejudicial attitudes that caused that abuse in the first place.