Disability, difference, and impairment: What's the difference?

If you've spent much time in the autism community, you've probably seen people arguing about whether autism is a difference, a disability caused by autism itself (an "impairment"), a disability caused by society, or a disability caused by both. So, what do these terms mean, and why does it matter? 

To make these issues clearer, let's look at some examples that have nothing to do with autism.

At one time, left-handedness was considered bad. Children were punished for writing using their left hands, and forced to write with their right. This occurred until quite recently, and still seems to occur occasionally in the U.K. President Obama reports that, as a child in Indonesia, his teachers hit him with a ruler for writing with his left hand. President Obama explains that left-handedness was viewed as impolite in Indonesia, and a variety of other negative associations exist. In cultures that developed a practice of eating, interacting and handling food with the right hand while cleaning their bodies with the left, the left hand was considered "unclean" and regarded with disgust. In Christianity, Jesus sits at God's right hand, while those who have lost God's favor are described as "sent to the left."

A disability is when people's characteristics do not fit with the society in which they live, which leads to bad treatment, diminished opportunities, and ultimately, less success in life. See, for example, the Americans with Disabilities Act's definition of "disability," whose last sentence hints at the important role of society:
An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. 
Left-handedness was then a disability, for several reasons. First, left-handed people were viewed and treated negatively. Second, the environment was not accessible to them: everyday tools and furniture (e.g., desks) were set up for right-handers, making them difficult for left-handed people to use. Lastly, the educational system was dedicated to eliminating left-handedness. 

Today, many of us see this discrimination against left-handed people as backward. We realize there is nothing inherently wrong or harmful about using the left hand. If society had not chose to view left-handedness as bad, it would not be a disability. Left-handedness is not an impairment, something that would make it hard for people to do important activities no matter how they are treated. It is simply a harmless difference. Choosing to view a trait like left-handedness as an impairment makes it into a disability. 

However, if we could talk to the teachers who punished children for using their left hand, we would probably find that they believed left-handedness was an impairment. They probably thought they were doing the child a favor. If they could just make the child more like the right-handed majority, he would never face stigma or lose access to jobs and relationships. In other words, they probably were like many teachers and clinicians working with disabled children today. They saw that left-handedness was a disability, and instead of blaming the true cause--society--and trying to change it, they blamed the trait and set out to eliminate it. The only difference between those teachers then and special educators today is whether their culture considered left-handedness an impairment or a difference. 

That should make us alert to the possibility that some of the disabilities we currently consider impairments are just differences, like left-handedness.  Our children will probably look back at our treatment of stuttering, learning disabilities, autism, or ADHD with the same disgust and pity we have when considering how our ancestors treated left-handed people.

That, in fact, is the great insight of the neurodiversity movement--that people come with a wide variety of traits, and that this diversity makes the human species healthier and more likely to survive. While it's natural for humans to devalue minorities, like left-handed people, the world would be worse off without them in it. Because we are prone to view all differences as impairments whether or not they really are, we should be cautious about attempts to eliminate their disabilities--especially if it involves treating them in ways we would never treat a non-disabled person. Furthermore, the more subjective the impairment (e.g., "inappropriate" social interaction), the more skeptical we should be.

Some things we currently consider impairments may really be impairments. Even so, stigmatizing people and limiting their access to the world only makes their impairments worse. A person who cannot walk can still move around at will and live independently if there are wheelchairs, sidewalks and curb cuts, but could not before the Americans with Disabilities Act (ADA) made these technologies widespread. 

It would be hard to imagine any impairment that could cause as much suffering as being excluded from school, fired from jobs (if you are even hired at all), unable to access transportation, denied the right to vote, forcibly sterilized, forbidden to enter into contracts, or denied medical treatment. This was the normal state of affairs for people with disabilities before the ADA, and some of this treatment continues today.

One reason many people with disabilities like the term "disability" is because it acknowledges the importance of society in making people disabled, while embracing the whole spectrum from those who are a little different to those who are severely impaired. This invites people with a variety of disabilities--and attitudes about their own disability--to work together. (I have seen fewer parents of disabled children who are comfortable with the term "disability"). 

In short: A difference is a harmless trait, like left-handedness. An impairment is a trait that makes important activities difficult or impossible. A disability can be either a difference or an impairment. The distinction matters. However, for both, the way society treats people with disabilities may be what holds them back most.


Is all research really "me-search?" And is "me-search" bad?

J. Sumerau at “Write Where it Hurts” makes a provocative argument that the word “me-search” is used as a slur, and that all scientific research is, in a sense, “me-search”:
"In my experience, many scholars refer to work that engages some aspect of personhood as me-search. While this is a cute phrase, it is generally used to bolster claims to objectivity and/or to marginalize scholars who work in areas that have personal significance for them. ...On the surface, the best answers I have been able to find for this question at conferences, online, in departments, and in informal conversations suggests the therm refers to any case where someone conducts research in an area or with a population that is personally relevant to them. Based on this suggestion, me-search could actually just be considered a synonym for science. When, for example, an American demographer studies American population trends, ze is conducting me-search because ze is studying zir own population...One could even go so far as to say that if science is the study of the natural world, all science is me-search because all of us are parts of the natural world, and both influence and are influenced by this phenomena. Unless someone can find some area of study that does not influence human life or somehow become non-human prior to doing any kind of research, all research is ultimately me-search because all research seeks to make sense of the world we (or me) live in to the best of our current abilities."
Sumerau seems to be right about how the term “me-search” is used. A heterosexual psychologist who studies heterosexual couples would not be accused of doing “me-search,” while a gay man studying homosexual couples would be. Heterosexual psychologists studying mainly heterosexual couples are quite common in relationship research, and they often appear to present themselves as researching the relationship of couples in general, regardless of sexual orientation. They can get away with this because the vast majority of people are heterosexual or in opposite-sex relationships, so even if many individuals are completely different from these research participants, the average person is like them. Because homosexual couples are in the minority, a researcher studying them could not claim to be studying couples in general, even if she wanted to.

Thus, I agree that “me-search” is in the eye of the beholder. “Me-search” is a way of denigrating the subjectivity of those in the minority while ignoring that of those in the majority. However, subjectivity comes with problems that Sumerau does not even mention. The problem is not that people ask minority researchers engaged in “me-search” to question their assumptions and biases. The problem is that they are not asking majority researchers to do the same.

("Me-search” is a continuum, not a binary. Sumerau’s first example—American demographers studying American population trends—is uncontroversially “me-search,” while his last example, a physics or geology study, seems much less so. In a trivial sense, yes, studying the natural world is “me-search” because we live in the world and understanding it better will change our technology, our behavior, and the way we understand the world. But, are our identities bound up in whether the Higgs boson exists? Frankly, most of us don’t care if there is a Higgs Boson, both because the phenomenon itself is distant from our experience, and because we don’t think discovering it will have much effect on our lives. By contrast, determining whether people have free will could alter how we see ourselves and perhaps administer justice. Discovering what makes people happy would not only affect our lives, but also directly concerns our experience. Physics seems “objective” and not like “me-search” and sociology the opposite because physics is more remote from our experiences, concerns, and identities than sociology. So, I disagree with Sumerau’s claim that everything is me-search, and therefore nothing is me-search. Different research areas can involve more or less me-search, and the difference matters).

I believe “me-search” should be undertaken with a great deal of critical thinking and self-examination. When our identities are at stake, we tend to engage in two behaviors that hamper our reasoning and communication: motivated reasoning and non-constructive arguments. Guarding against these requires constant vigilance. When our identities become part of our work, the opportunities for motivated reasoning and non-constructive arguments multiply.

The first pitfall of Me-search: Motivated Reasoning
No one is immune to motivated reasoning: the tendency, when our values and identities are at stake, to cling to evidence that supports our beliefs while ignoring or rejecting counterevidence. We look for ways to discredit those with whom we disagree, while ignoring the misdeeds of our own side. If you regularly read scientific papers, for example, you might find yourself poring over tiny details of the methods and statistics in papers you disagree with, while skimming papers you want to cite to support a point you were already planning to make in your introduction. When no legitimate evidence comes to hand, people even build elaborate conspiracy theories, and if all else fails, attack their opponents' motivations. For example, in the absence of evidence that vaccines cause autism, people with this belief allege a government coverup of the evidence, or claim their opponents are funded by drug companies. Attacking their opponents' funding works because drug companies are associated with corruption and untrustworthiness, which provides a convenient excuse to ignore the researchers' message. Of course, funding isn't a magic button you press to get exactly the result you want. Just because someone is funded by a corrupt source does not mean that their results are wrong, or were obtained with unethical methods. This argument is only convincing if you are already looking for an excuse to disbelieve).

Ironically, descriptions of motivated reasoning, like this one from Skepdic.com, are often good examples of motivated reasoning themselves. They use examples that are far outside the mainstream of public opinion (or at least, educated public opinion), such as “the Apollo moon landing was a hoax,” “the Holocaust did not happen,” or “evolution is a hoax.” This makes it seem as if only conspiracy theorists and the extremely religious engaged in motivated reasoning, while educated, skeptical people—like the audience of Skepdic.com—would never fall prey to such an error. This is an example of all the key ingredients of motivated reasoning—a self-serving belief, hypersensitivity to opponents’ errors, and blindness to one’s own. No one is more susceptible to motivated reasoning than those who believe themselves immune to it. 

The second pitfall of Me-search: Destructive emotional reactions
When identities are at stake, heated disagreements can go from productive debates to feuds, or cutting off communication entirely. The intense arguments that blow up occasionally on the Thinking Person’s Guide to Autism’s website and facebook page are a great example.  A certain sort of non-disabled parent of autistic children has invested an identity in being an “autism mom,” a “warrior”   “fighting autism” in order to “get their kid back.” It follows directly from the messages about autism promulgated by the media and the largest autism charity, Autism Speaks. And to a parent who feels overwhelmed by parenting a child with a disability, resents it, and doesn’t feel supported, this narrative gives them control and purpose, making them feel more heroic and less helpless. The problem, of course, is this ideology comes from attacking a basic part of their child that cannot be removed, and easily leads to ignoring the child’s communication, treating them with utter disrespect, making them feel hated, traumatizing them for years, abusing them, putting them in abusive therapy, or even murdering them. When parents talk about parenting their child this way, it presses all thebuttons of autistic people who have been traumatized by parents who behaved that way. Often, autistic adults lash out. But even if they find the commendable patience to politely explain why these parents are being hurtful, the parents react even more viciously. While parents’ rhetoric is an existential threat to autistic adults’ identities, autistic adults’ claim that parents might be hurting their child hits them in the part of their identity that matters most—their role as a parent. Most react defensively, although a few have listened and have transformed the way they view their role and parent their child—a change that improved their mental health. In short, both autistic adults and nondisabled parents feel their identity is threatened and react defensively, leading to over-the-top arguments, people being banned from the community, and many of the debaters cutting off communication by blocking each other on Twitter and Facebook. Emotional reactions based on identity can prevent people from communicating and working together.

Less extreme versions of these blowups occur in research, not just in the autism community. Psychology is full of theoretical disagreements that sometimes border on personal feuds, such as the old one between Lance Rips and PhilipJohnson-Laird, or the more recent one between Isabel Gauthier and Nancy Kanwisher . Since I am closely connected with people on one side of each of these debates I will not discuss any details. Each involves a long series of papers, so I invite you to read them and see for yourself. Personally, I think that the papers would have been clearer and more inviting to read had they been written in a less emotional context.

The Benefits of Me-search
So, if bringing identity into research can lead to motivated reasoning and personal feuds, does that mean everyone should avoid doing “me-search?” I think not, for two reasons.

First, lived experience provides knowledge that might be difficult or impossible for outsiders to gain. Autistic people talked about sensory overload and other sensory processing problems for decades before neurotypical researchers took an interest. Many autistic people and parents noticed echolalia can be a first step towards generating one’s own communicative language; only a handful of neurotypical researchers, such as Barry Prizant  in the 1980’s bothered testing the hypothesis. Many proclaimed the opposite and a few recent papers still do. In fact, behavior programs have tried to discourage echolalia (e.g., this). Yet, although responsive communication from caregivers helps typically developingchildren develop language, (and also autistic children), we don’t even know if having their best language ignored or discouraged by therapists stunted generations of autistic children’s development. Autistic people have known for a long time that stimming has many positive functions; researchers are still looking for new ways to stop them from doing it through behavior modification or even drugs.

Autism viewed from the outside is different from autism experienced from the inside, and both are aspects of what autism, the phenomenon, actually is—a set of genetic, brain, mind, and behavior states. If only neurotypical clinicians research autism, then we will not have the complete picture—we will only learn about autism as viewed from the outside. While autism-viewed-from-the-outside is real and sometimes important, it is not necessarily the most important part of autism. Without understanding autism-from-the-inside, we risk confusing the outward appearance of autism with what it really is. We would not have been stuck with obviously inadequate psychoanalytic, theory of mind, or “extreme male brain”  explanations of autism for so long had autistic people been involved sooner in researching their own condition.

Me-search is also important in so-called “translational” or “clinical” research fields, where the goal is to learn something that will improve people’s lives. People in a particular group do not always focus on the same outcomes as those outside of it. For example, autistic people often want to see less emphasis on finding causes and cures, and more emphasis on services, education, and employment. By contrast, people with ME or chronic fatigue syndrome would like to see more basic biochemical research on the causes behind their symptoms.  In both cases, those with the condition disagree with those doing the research—who do not have it. When people in a specific group have a say in what outcomes are considered helpful, research is more likely to actually help them. 

Me-Search: Approach, with Caution
I support neurodivergent people researching their own and similar diagnoses, so long as they observe themselves carefully to avoid motivated reasoning and unhelpful emotional reactions. I would also like to see neurotypical psychologists and neuroscientists recognize that they are engaged in “me-search,” and take similar precautions.

We need to be careful about endorsing theories that fit our experiences regardless of the strength of the evidence. For example, many autistic and other neurodivergent people describe being sensitive and overreactive to other people’s emotions. Thus, even before learning the details, I am predisposed to support the intense world theory of autism, proposed by Kamila and Henry Markram. Intense World Theory proposes specific neural mechanisms behind this hypersensitivity, based on rodent research. They also propose a specific way of raising autistic children that contradicts findings in typically development research: Because autistic people are hyperaroused all the time, the Markrams recommend providing very little stimulation, whereas in typically developing humans and animals, deprivation of stimulation can actually cause developmental delays. While I and others may be tempted to adopt Intense World Theory because it fits experience well, it need not be the correct mechanism. Not every promising finding in rats translates to humans. Even if this mechanism is correct, that may not imply that drastically reducing sensory input is good for autistic development. For example, maybe gradual increases in exposure would help them learn to tolerate the environment better. Or maybe the optimal level of stimulation is lower than typical, but not as low as the Markrams suggest. The Markrams’ research program will have to follow two steps: demonstrating that intense world theory applies to a significant portion of autistic humans, and determining whether reduced stimulation really does help. These are separate programs requiring very different research skills, and each will likely take years.

We also need to be careful to avoid dismissing any research evidence that contradicts our experiences. When our identities are involved, we may be more tempted to explain away contradictory evidence, for example, by calling it a methodological problem. (Maybe they didn’t design their task right, or choose the right participants, or explain their task properly). This is easy to do because there are lots of small factors that go unreported that affect how a study comes out, and sometimes there really are methods problems. But we have to be willing to admit when our theories are wrong—even when they’re based on personal experience—or we’re not doing science.

Many researchers probably have difficulty acknowledging their mistakes, and not all of them do me-search. Me-search simply increases the temptation. Me-searchers might have an easier time letting go of theories based on experience if they remind ourselves that they may not be representative. What they know about themselves may not be true of the whole population they study.

Sumerau seems insufficiently concerned with these pitfalls of “me-search.” However, he or she lays bare the unequal way “me-search” is used, to discredit those in the minority and reassure those in the majority. Neurodivergent researchers who want to research similar groups need both sorts of knowledge. They need to know the sociology of terms like “me-search” so they can combat this prejudice. They also need to understand the biases that come with me-search so their identities help, not harm, their science. Armed with this knowledge, they could transform their fields.

For their part, neurotypical psychology and neuroscience researchers who study the general population need to recognize that they are doing "me-search," and are just as susceptible to biases as those in the minority. If anything, they may be more so. Because those in the majority encounter more people like themselves, they can more easily have their "people are like me" biases confirmed. If researchers recognized identity-based biases as a normal part of researching human beings, not some weird property of minority researchers, they would do better science. 


How can you measure a non-speaking person's understanding of language?

The autism community has become increasingly concerned about understanding people with no spoken language, and often, severe developmental delays. Such people have previously been excluded from many research studies, in favor of more convenient subjects. However, psychology offers a variety of tools for learning about the mental life of people who cannot speak, most of which involve measuring eye movements. Some of these, such as habituation/preferential looking, come from research with babies. This makes sense, because working with babies means making inferences about the thoughts of people with little or no speech or gesture. Surprisingly, another paradigm comes from research on how adults interpret language, and is called the "looking while listening" or "visual world" paradigm.

Visual World Paradigm
Image result for visual world paradigm
Example of the visual world paradigm, using the words "peach," "beach," "sheep," and "lock."
Back in 1974, a researcher named Cooper measured people's eye movements while they listened to short narratives and looked at pictures of common objects. Some of the objects were referred to in the spoken narrative, while others were not. Participants were told their pupil size was recorded, but they could look anywhere they wanted. The listeners tended to look at objects that were being mentioned in the narrative--either while the word was still being spoken, or within about 200 ms after it [4]. In the 1990's, when eye movements became easier to measure, Tanenhaus's research team found something similar. The method, dubbed the "visual world paradigm," quickly took off [4].

While people do not consciously choose to look at the objects they are thinking about, and may not even realize they're looking at them, their eye movements still reflect their thoughts.  That makes the visual world paradigm attractive for understanding language comprehension.

Researchers used this method because they were interested in how people's language abilities interacted with their non-language ones (such as the ability to recognize objects)[4]. They were also interested in when and how we distinguish a word from other, similar-sounding words. While it feels like one recognizes short words all at once, they actually take several hundred milliseconds to say. During this time, information about the word gradually accumulates, and your brain uses it to predict what word the person is saying. The visual world paradigm can be used to measure how long it takes to distinguish a word (e.g., "beaker") from another word that sounds the same at first (e.g., "beetle"), as opposed to a rhyming word (e.g., "speaker") or a completely unrelated one ("dolphin") [1]. The first study I ever worked on [2] used the visual world approach with these exact types of words, while measuring brain activity with EEG.

An important aspect of this method is timing. It doesn't just matter which picture people look at, it matters when they look at it. The timing for the eye movement data is matched up very precisely with the timing of the audio and the picture, or "time locked." Then one can say, for example, that at the point where the speaker has said "bea," the listener glances at both the beetle and the beaker, but by the time the word finishes, the listener is only looking at the beaker.

Looking While Listening
A simpler version of the visual world paradigm, the "looking while listening" procedure, is used to measure very young children's language comprehension [3]. Children look at a pair of pictures while listening to speech that names one of the pictures. Just as with visual world, their gaze patterns are measured and time-locked to the speech signal.

One difference is that only two pictures appear onscreen instead of four. Fewer distracters is suitable for very young children, or those with limited ability to control their attention. The pictures are also very carefully matched on how bright and interesting they are.

Researchers code where the child is looking during each trial a frame at a time. Trials are categorized depending on where children are looking when the word begins and ends [3].

For example, if a child starts out looking at the correct object (the "target") and continues looking at it the entire time the word is presented, this is a "target-initial" trial. This pattern reflects comprehension. If the child starts out looking at the distracter picture, but shifts during the word to looking at the correct picture, this is a "distracter-initial trial," and it also indicates comprehension.

Certain patterns indicate the child probably does not comprehend the spoken language presented, including:
  • The child starts out looking at the distracter picture and never shifts to looking at the correct picture.
  • The child starts out looking at the target picture and switches to the distracter.

Other patterns suggest that the child was not performing the task at all, and his or her comprehension can't be judged:
  • The child was looking somewhere between the pictures the whole time and not directly at either of them.
  • The child was looking away (not at the display at all) the whole time.
Data can be plotted continuously, like this, to see how children's comprehension gradually unfolds, and how it improves with age:
Above image is from Fernald and colleagues (2008) [3].

However, other measures are more intuitive and easier to compare between groups. Perhaps the most intuitive is accuracy, the proportion of time spent looking at the correct picture as opposed to the distracter (or anything else) [3]. If the child consistently looks at the labeled picture for most of the time, then he or she probably understands that the label refers to that picture.

Children look more consistently at the correct picture as they get older and develop higher language skill. Looking while listening comprehension might also reflect individual differences in language abilities in general. For example, typically-developing children with higher looking while listening comprehension at 25 months may have higher standardized language scores (CELF-4) at 8 years [3].

Using looking while listening with autistic children
Looking while listening has been used to measure young autistic children's language in their own homes [5]. Children view videos with two side-by-side images, accompanied by audio that only matches one of the images. If children understand which image matches the audio, they will look at it rather than the distracter. Videos were used instead of static pictures because these are better for measuring children's understanding of verbs, including who did what to whom. This video by Letitia Naigles and Andrea Tovar [5] show how the videos are designed and presented to children. It's a great example of how high-quality, well-controlled research can be done outside the lab, so participants can be comfortable.

Of course, this method isn't perfect. One question to be resolved is how well it works for people with difficulty making eye movements. Difficulty making controlled eye movements sometimes occurs in autism, and may be especially common in those with language impairments. The eye movements made during the looking while listening paradigm are not deliberate, so I am not sure if a person with difficulty making controlled eye movements would also have difficulty with these. If so, this task won't be suitable for every nonspeaking person. But no assessment method is suitable for everyone, and this is more accessible than most standardized tests.

Measuring people's understanding of nouns, verbs, and sentences is very far from understanding a person's experience. So, the looking while listening paradigm and similar methods do not completely solve the problem of understanding nonspeaking people. However, they might help with presuming competence and offering an appropriate education. When we can actually measure whether a nonspeaking person can understand what we say to them, we no longer have any excuse for assuming they do not understand. Most likely, many nonspeaking autistic people will demonstrate comprehension beyond what their parents or teachers predicted.


  1. Paul D. Allopenna, James S. Magnuson, and Michael K. Tanenhaus (1998). Tracking the time course of spoken word recognition using eye movements: Evidence for continuous mapping models. Journal of Memory and Language vol. 38, pp. 419-39.
  2. Amy S. Desroches, Randy Lynn Newman, and Marc F. Joanisse (2009). Investigating the time course of spoken word recognition: Electrophysiological evidence for the influences of phonological similarity. Journal of Cognitive Neuroscience vol. 21, iss. 10, pp. 1893-1906. Full text HTML.
  3. *Anne Fernald, Renate Zangl, Ana Luz Portillo, and Virginia A. Marchman (2008). Looking while listening: Using eye movements to monitor spoken language comprehension by infants and young children. In: Irina A. Sekerina, Eva M. Fernandez, & Harald Clahsen (editors), Developmental Psycholinguistics: On-line methods in children's language processing xviii, pp. 97-135. Open access PDF.
  4. *Falk Huettig, Joost Rommers, and Antje S. Meyer (2011). Using the visual world paradigm to study language processing: A review and critical evaluation. Acta Psychologica vol. 137, pp. 151-71.
  5. *Letitia R. Naigles & Andrea T. Tovar (2012). Portable intermodal preferential looking (IPL): Investigating language comprehension in typically developing toddlers and young children with autism. Journal of Visual Experimentation 70, e4331 (Paper & video). URL.


Intense focus on specific topics isn't unique to autism

Often, when we think of a smart, verbal autistic person, we imagine someone talking our ear off about a favorite interest.

A meme showing a camera shaped like a face, with the caption "Let me tell you what I like for the next 2 hours."

The current diagnostic criteria for ASD (DSM-5) include the following:
"Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests").
The previous version (DSM-IV) also described an:
"Encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus."
So, there are two aspects of autistic people's interests that are considered unusual: "intensity," the presence of things like intense emotions, drive to engage in the interest, or time spent; and "focus," the absence of interest and attention to other things.

But, are either of these unique enough to autism to be diagnostic? It turns out, children in the general population also have interests that are extremely intense. The jury's still out on focus, as far as I know. My guess is, it won't be unique to autism either. After all, if what you love most is trains and you want to learn and talk about and look at trains all the time, you'll do that whenever you have a choice--and therefore, you'll do other things less.

Researchers on intense interests didn't set out to learn about autistic traits. In fact, they stumbled on these interests while studying other things. Judy DeLoache's team studied how children develop abstract concepts, and Joyce Alexander's team researched children's knowledge about science topics. Alexander's group in particular focused on children with "expertise" in specific topics--children with lots of well-organized knowledge--and noticed that they tended to be extremely interested in their topic of expertise. So, these researchers started examining what these intense interests were like and how common they were.

The Studies
Judy DeLoache and colleagues [2]  recruited parents of 177 children, ages 11 months to 6 years, who had participated in other studies. They were mostly white and middle class. Parents initially filled out a questionnaire to screen for children who might have intense interests. They were asked only about their child's most intense interest ever. Parents who claimed their child had an intense interest were interviewed by phone. However, a parent's belief that their child had an intense interest was not enough for the researchers. Children's interests were given a score ranging from 1 (moderate interest) to 5 (extremely intense interest) based on duration, the number of different settings where the interest was observed, the number of objects and activities involved in the interest, and the extent to which other people noticed the interest. Only if two raters gave the child a score of 3 or higher were they judged to have an "extremely intense interest."

Joyce Alexander and colleagues [1, 4, 5] did a large longitudinal study, recruiting 215 4 year olds and following up every 2 months for two years. Unfortunately, these children were also mostly white and middle class. Parents were interviewed 13 times about their child's preferred activities during free play, amount of free play time available, preferred TV shows, videos and books, and whether the child had focused interests. Researchers measured the proportion of interviews where children had a focused interest, total number of interest topics over the two years, and the length of the interests.

As part of a neuroimaging study on expertise, Thomas and Karin James [3] recruited 10 8-12 year olds with intense interests in Pokemon. They used a parent questionnaire based on Alexander's and DeLoache's studies to identify these children. Participants had no record of learning disabilities and had typical scores on the Childhood Autism Screening Test (CAST).

How common are intense interests?
Between 20% and 30% of children seem to have extremely intense interests in one or two topics.

In DeLoache's [2] sample of 177 children, parents reported that two thirds (116) had an intense interest. Of these, researchers judged 65 to have only moderately strong interests. So 51 children, or 29% of the whole sample, had extremely intense interests.

Joyce Alexander's team reported in 2008 [1] that 21% always had a focused interest during the two years of the study.

These studies suggest that intensity and focus are continuous traits. At one end of the continuum, some children have extremely intense interests focused on one or two topics. At the other end, children never have any focused or strong interest at all. Interestingly, a total lack of focused interests seems rare--only 34% in DeLoache's study [1], and 10% in Johnson's [4].

The majority of the population seems to be in the middle, with several different patterns observed:
  • Interests are less intense: Similarly focused on 1 or 2 topics, but less intense.
  • Interests are less focused: Interests are still highly intense, but are spread across more than 1 or 2 topics.
  • Interests are shorter: Interests may still be highly intense but are short--rapidly shifting from one interest to another. For example, while 21% of Alexander's [1] participants had focused interests, only 7% were interested in only a single topic all 24 months, suggesting many were shifting from one interest to another.
  • Combination: Alexander's studies [5] included some children who had an average of 6 interests lasting up to 10 months, and others with an average of 3 interests lasting up to 22 months. The former group could be considered to have both shorter and less focused interests.
When do intense interests start?
Children's intense interests start early. In DeLoache's study, interests emerged between 3 and 42 months, with the average age being 18 months. Almost 40% of interests were reported to have appeared within the first year, and 90% had developed by age 2. Several parents reported that their children's object of intense interest was among their first words.

Perhaps because these interests appeared so early, almost 80% of the parents had no idea what triggered them; they said these interests had "just always been there."

How long do intense interests last?
Intense interests often last for a long time. DeLoache and colleagues found that these interests lasted from 6 to 36 months, or an average of 22 months. Given that these children were, on average, 35 months old, they had had these interests for most of their lives.

Alexander and colleagues [1] reported a shorter but still respectable duration--an average of 11 months.

What topics are children intensely interested in?
Topics of interest vary widely,with some being typical for age and gender, and others highly idiosyncratic.

Typical interests included vehicles, balls, books, dolls, and dinosaurs [2]. Interests were often in objects (e.g., tea sets, puzzles, tools) but sometimes in fiction (e.g., the Wizard of Oz) [2]. Interests were often gender-stereotyped [1], with half the boys interested in vehicles and machines, and almost half the girls interested in things like dress-up, babies, and teasets [2].

Importantly, unusual interests aren't unique to autism. About 12% of DeLoache's children from the general population also had unusual interests for their age, including [2]:

  • The Blue Angels
  • Pouring liquids
  • Bodies and injuries
  • U.S. Presidents
  • Brooms, brushes, and mops
  • Inventing and building
Parents of children with idiosyncratic interests believed these interests had originated from the child, not the parents [2]. For example, a 3 year old boy developed an intense interest in the Blue Angels, a fighter pilot squadron of the U.S. Navy, when he saw a clip of them flying on TV during a program on another topic.

Who has intense interests?
Children with high IQChildren with intense interests may have higher IQ than average.

Eight to twelve year olds intensely interested in Pokemon had higher overall, verbal, and nonverbal IQ on the WISC than age peers, as well as higher working memory [3].

Alexander's team [4] found that four year olds with intense interests in scientific topics or vehicles had higher receptive vocabulary (on the Peabody Picture Vocabulary Test-III). While vocabulary is not the same thing as verbal intelligence, it is highly correlated in the general population and was used as a proxy for it in this study. Children with intense interests also had higher working memory for shapes (SHAPE SPAN 2).

Another study by the same team [5] found that children with long-lasting "conceptual" interests in science or vehicles had IQ (Kaufman Brief Intelligence Test) about 1 standard deviation above the normative mean (average standard score=114).

Boys. Most children with intense interests are boys. In DeLoache's study, 75% of the children with intense interests were boys. (By contrast, 43% of the children with moderate interests and 30% of those with no strong interests at all were boys). Researchers also judged boys' intense interests to be more extreme than girls'.

It's not yet clear why there are such strong gender differences. Unfortunately, these researchers cite old work with rather unsophisticated gender concepts by Simon Baron-Cohen as a possible explanation [1, 2, 4]. But better explanations exist.

One clue is that the interest topics themselves are often gender-stereotyped [1, 2, 4]. Even if children are too young to be aware of gender stereotypes, their parents largely control their environment, and may surround their children with gender-stereotyped objects. A boy without access to dressing-up materials is unlikely to develop an intense interest in this activity; a girl without access to Legos would be unlikely to develop an intense interest in them, either.

Another clue is that girls' interests start equally early [2] and last an equally long time [1, 2]. They simply seem to be focused on different topics or activities--ones that are treated differently by some researchers. Specifically, they were more likely to have interests in creative activities (e.g., drawing), writing, and pretend play, and less likely to have interests in building things or pursuing information about scientific topics and vehicles [1, 4]. To the extent that researchers focus on interests in objects or scientific topics, they may be biased towards finding more boys. So the methods researchers use may also contribute to finding gender differences.

Are intense interests ever a nuisance in the general population?
Parent interviews sometimes hinted that their child's interest could be seen as annoying and was sometimes discouraged [2].

For example, one little girl's intense interest was in pouring liquids from one container into another. "So constant was this activity that she was banned from visiting the next-door neighbors for repeatedly creating messes by her pouring," DeLoache and colleagues report. Another little boy was fascinated by brooms, mops, rakes, hairbrushes, toothbrushes, and vacuum cleaner attachments. His mother bought him his own and locked the rest in a closet and an out-of-reach cupboard "to keep him from playing with them." One little boy's teacher ended up putting his favorite table with Thomas the Tank Engine trains on it into storage because the boy spent all the time there and stood guard to prevent other children from playing there. Another boy was forbidden to pretend to be a dinosaur at preschool because it was scaring other children.

How does the family influence the development of intense interests?
While parents may not be crucial for generating an interest, their encouragement can help maintain it.

In DeLoache's study, over a third of the intense interests emerged during the first year of life, without any parental encouragement. In fact, some children developed interests their parents found odd, potentially dangerous (e.g., fans), or even disgusting (e.g., injuries and roadkill).

However, parents sometimes give children a gift or engage in an event with them that sparks their interest. [5] Moreover, the majority of parents do support their children's interests [2], and this might help them maintain these interests longer. For example, children are more likely to maintain "conceptual" interests (in scientific topics or vehicles) when parents [4]:
  • Value consistency and structure in the home. 
  • Provide lots of opportunities for free play and emphasize educational activities and emphasize communication.
Parents of children with lasting "conceptual" interests tend to support their children's interest through educational activities, such as trips, reading, collecting things, and watching videos together [4, 5]. Parents of children with other lasting interests, such as arts, music, or sports, tended to support the child's interest through playing with them [4].

Parents also share their child's interest, or a related one, almost seventy percent of the time [4]. That makes it likely that they and their child discuss the interest and do activities relating to it frequently.

Perceptual nature of early intense interests
Parents of autistic children have noted the perceptual nature of their children's interests, such as the pattern of circles and rotation involved in one child's fascination with clocks, wheels, and planets.
The same may be true in the general population. Children with intense interests in balls initially attended to anything spherical in shape, regardless of size, type of object, or material. Children interested in trains started out fascinated with train tracks, and later with fences and zippers--all sharing a similar pattern of intersecting vertical and horizontal lines [2].

DeLoache and colleagues seem bemused by why a "meaningless perceptual image" should come to dominate children's lives for such a long time.  Children younger than three or four are too young to have the knowledge to determine that these images are meaningless, and to focus on "meaningless" misses the point--this is clearly an aesthetic and emotional experience. The first few chapters of  autistic poet Tito Mukhopadyay's book "How can I talk if my lips can't move?" provides a glimpse of how it might feel to be in the grip of an aesthetic experience with everyday objects (in his case, a mirror).

Are intense interests in the general population like special interests in autism?
Young children in the general population have interests that are, statistically speaking, "abnormal in intensity and focus" (given that they are the top 20-30% of the population). These interests are noticeable to others in many contexts, suggesting that they truly dominate children's lives, and may not yet be hidden in the interests of social acceptability. Like autistic interests, these often concern idiosyncratic topics or objects with specific perceptual characteristics. Like autistic interests, intense interests can be viewed as weird or a nuisance to others.

One explanation for these similarities is that at least some of the children with intense interests were on the autism spectrum or at least had strong autistic traits. Most studies of children with intense interests, interestingly, do not report screening for autism spectrum disorder or measuring "autistic traits." One study that did found that 8-12 year olds intensely interested in Pokemon scored normally on the Child Autism Screening Test (CAST), and actually had lower "systematizing" traits than peers on the Systematizing Quotient-Empathizing Quotient test (SQ-EQ). [3]  (Autistic children typically score higher).  A single study with 21 participants can't resolve this question. But, if this finding is replicated, it would suggest intense interests aren't solely the product of autism or autistic traits. They really do occur in the non-autistic population, too.

More likely, the predisposition to develop intense interests is a continuous trait. High levels of this trait might be more common in autism, but occur in others, as well1.

Intense interests and special interests look very similar, and they seem to have a positive side and a negative side. The positive side is that they are enjoyable, and seem to motivate people to learn [4, 5]. The negative side is that they can be disruptive [2], and perhaps consume time and attention that could be spent on other things. Yet, research on intense interests has focused mostly on its positive role in learning, with only one study reporting negative aspects. And while autistic people talk about the joy of special interests and their importance for learning, studies of autistic children prefer to focus on how atypical or disruptive they are [e.g.: 8; 9, 10]--with the exception of this study by Mary-Ann Winter-Messiers, the mother of an autistic son [11].

At center is a box with a smily face on the left side and a storm cloud on the right. A smiling man looks at the left side and says, "Intense." A frowning doctor looks at the right side and says, "Restricted...obsessive...perseverative."

I suspect that intense and special interests are a single phenomenon with both positive and negative aspects, but that we focus on the positive aspects in typical development and the negative ones in autism.

So how do we determine whether these are, in fact, the same thing?

First, we must apply the same measures to typically developing and autistic populations. To my knowledge, this has not yet been done yet.2  Furthermore, questionnaires for the general population seem to provide more fine-grained information about the length of children's interests and the way they behave when engaged in their interest.

Second, we would need to start looking at negative aspects of interests in the typical population and positive ones in the autistic population. Parent questionnaires for the general population have generally been neutrally to positively worded, while those for the autistic population have used negative wording and emphasized the weirdness or disruptiveness of the interests. Key questions here: do non-autistic children's  interests also tend to get in the way of doing other things? And, can research confirm that autistic children both love and learn a lot from their interests?

One could use an existing general population measure and an existing autistic measure with both groups. Or, better still, one could develop a new set of questions to be used with both groups.

Right now we're assuming that non-autistic interests have more positive consequences (e.g., learning new things) and autistic interests have more negative ones (e.g., socially unacceptable, distracting from schoolwork). This is theoretically possible, but we can't know unless we actually ask both autistic and non-autistic groups the same things.

  1. Joyce Alexander, Kathy E. Johnson, Mary E. Leibham, & Ken Kelley (2008). The development of conceptual interests in young children. Cognitive Development 23, pp. 324-334. PDF here.
  2. Judy S. DeLoache, Gabrielle Simcock, & Suzanne Macari (2007). Planes, trains, and automobiles--and tea sets: Extremely intense interests in very young children. Developmental Psychology vol. 43 no. 6, pp. 1579-86. PDF here.
  3. Thomas W. James and Karin Harman James (2013). Expert individuation of objects increases activation in the fusiform face area of children. Neuroimage vol. 67, pp. 182-192. PDF here.
  4. Kathy E. Johnson, Joyce M. Alexander, Steven Spencer, Mary E. Leibham, and Carin Neitzel (2004). Factors associated with the early emergence of intense interests within conceptual domains. Cognitive Development vol. 19, pp. 325-343. PDF here.
  5. Mary E. Leibham, Joyce M. Alexander, Kathy E. Johnson, Carin L. Neitzel, & Fabiola P. Reis-Henrie (2005). Parenting behaviors associated with the maintenance of preschoolers' interests: A prospective longitudinal study. Applied Developmental Psychology vol. 26, pp. 397-414. Abstract here.
  6. American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders (4th ed., text revision). Washington, DC: APA. Autism criteria found here.  
  7. American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: APA. Autism criteria found here.
  8. Ami Klin, Judith H. Danovich, Amanda B. Merz, & Fred R. Volkmar (2007). Circumscribed interests in higher functioning individuals with autism spectrum disorders: An exploratory study. Research & Practice for Persons with Severe Disabilities vol. 32, iss. 2, pp. 89-100. PDF here.
  9. Lauren M. Turner-Brown, Kristin S.L. Lam, Tia N. Holtzclaw, Gabriel S. Dicther, & James W. Bodfish (2011). Phenomenology and measurement of circumscribed interests in autism spectrum disorders. Autism vol. 15, iss. 4, pp. 437-456. Full text here.
  10. Simon Baron-Cohen & Sally Wheelwright (1999). "Obsessions" in children with autism or Asperger syndrome. Content analysis in terms of core domains of cognition. British J. of Psychiatry vol. 175, pp. 484-90. PDF here.
  11. Mary Ann Winter-Messiers (2007). From tarantulas to toilet brushes: Understanding the special interest areas of children and youth with Asperger syndrome. Remedial & Special Education, vol. 28 no. 3, pp. 140-152. PDF here.
  12. Michelle Dawson, Laurent Mottron, & Morton Ann Gernsbacher (2008). Learning in Autism. In H.L. Roediger, III. (editor), Cognitive Psychology of Memory. Vol. [2] of Learning and Memory: A Comprehensive Reference, 4 vols., pp. 749-772. Oxford: Elsevier. PDF here.
  13. Chloe Jennifer Jordan & Catherine L. Caldwell-Harris (2012). Understanding differences in neurotypical and autism spectrum special interests through internet forums. Intellectual & Developmental Disabilities vol. 50, no. 5, pp. 391-402. PDF here.

1This is purely speculation, but I notice another similarity with autism, as well. Particularly in DeLoache's study, children with intense interests developed their interests independently and often without encouragement from parents. This reminds me of the self-motivated self-teaching that often occurs in autism, which Michelle Dawson, Laurent Mottron and Morton Ann Gernsbacher describe here [12]. In autism, the tendency to teach oneself often comes with difficulty learning from others, which need not be true of non-autistic children who teach themselves. However, I still wonder if there is a relationship between self-motivated intense interests and self-taught learning in general. Is this another relationship common in autism, but existing in the general population?

2 One study does directly compare the "special interests" of neurotypical and autistic adults through internet forums (Wrongplanet for autistic and LiveWire for neurotypical) [13]. However, it analyzed forum content that was already produced, rather than measuring and comparing the intensity of each individual member's interests. It is thus unclear clear whether neurotypicals' interests are intense at all, much less similarly intense and focused to autistic participants'. The researchers were also unable to determine how many of the participants on the "neurotypical" forums were in fact autistic.


Autism Acceptance Month Links: On Acceptance

April has been dubbed Autism Awareness Month, but most people these days are aware that autism exists. However, they may not know much about what autism is, what it's like to have autism, or what autistic people need. Moreover, they likely remain blissfully unaware of the stigma that denies autistic people equal access to education, work, friendship, medical care, and even freedom from abuse and filicide.  Thus, I and many others instead observe Autism Acceptance Month.

What acceptance means can be difficult to define. We do not wish to "love the person, hate the autism," which is as far from real acceptance as "love the person, hate the gay" or "love the person, hate the Jew." Neither, however, do we wish to deny that autism can involve real impairments--weaknesses in various abilities that create needs for services and accommodations which others may not require. Many people struggle with how to accept the whole person, autism and all, while acknowledging that its effects are not always or entirely positive for every person.

Moreover, talk of acceptance can often be abstract, and leave unanswered some important questions: 
  • How does an accepting parent talk to, talk about, and discipline their child?
  • How does an accepting parent or teacher set reasonable expectations, providing enough challenges to respect the child and stretch their capabilities, without demoralizing them by demanding they do things they can't yet?
  • What is an accepting way to deal with challenges like meltdowns, self-injurious behavior, or difficulties coping with everyday stressful situations (e.g., going to the grocery store or school assemblies)?
  • What is an accepting way to teach skills, like daily living/self care skills and getting along with nonautistic peers?
  • What does education based on acceptance look like?
  • What do accepting services look like?
  • What does an accepting workplace look like?
  • What does an accepting friend do? (And what should we teach nondisabled children about how to be a good friend?).
  • What does an accepting romantic partner do?
Fortunately, people have started addressing these questions. This post includes the blog posts that I think best explain what acceptance is, how it differs from awareness, and why it's important. Next week's links will discuss accepting parenting, the week after will focus on acceptance in education and services, and the last week of April's will examine acceptance in the media and broader culture. 

What is acceptance and how is it different from awareness?
Autism Acceptance Is... by Alyssa
"We need to be accepted for who we are. We need to hear that we're OK, we need to hear that the things we have trouble with don't make us broken or lazy or horrible people...We need people to listen when we say we need help, and we need people to listen when we say we don't. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities...Regardless of neurology, people need those things. Autism Acceptance is just reminding us that Autistic people are people, and that as such, we need these things too."
Companion piece: Autism Acceptance is Not by Alyssa
It's not acceptance, as in the stage of grief.

And speaking of stages, this image shared by Kezza shows what the journey to acceptance looks like for some autistic people and parents:

"When I look at those teachers who were most impactful in my life...they were the ones who treated me with compassion and acceptance. Teaching me to work with my differences instead of against them made a massive acceptance in how I approach life, how I value myself, and how far I've been able to get in life. ...Those who did not honor my differences, who held as their goal the idea that I should be made more 'normal,' more 'indistinguishable from my peers,' were not the ones who made the difference. In fact...their approach harmed me, in many ways."

Acceptance as taking the third glance and seeing who a person really is, "because everyone deserves to be seen."

Scroll down to the lists by Julia Bascom, Lydia Brown, Rachel Cohen-Rottenberg, Shannon Des Roches Rosa, Liz Ditz, Todd Drezner, Paula C. Durbin-Westby, Carol Greenberg,Jennifer Byde Myers, Ari Ne'eman, Stephen Shore, Kassiane Sibley, Nick Walker, Garret Westlake, Emily Willingham.

@Theoriesofminds' storify (summary) of a Twitter discussion, #AcceptanceMeans.

The Joy of Acceptance by Alex Forshaw
"Acceptance...creates a sense of safety: it allows me to feel that I don't need to hide behiind masking behaviors. I don't need to watch every single move I make, everything I say, in case I let my guard down and draw attention. I am free to act naturally, to truly be myeslf without fear of being mocked,c criticized, or otherwise made to feel that the way I am is somehow 'wrong.' That is acceptance. What does it require of other people for acceptance to happen? Not much--only that they allow me to live my life my own way. So long as it doesn't harm them, what possible problem could they have with that?"
What acceptance is not by Musings of an Aspie
"Acceptance is not giving up. Acceptance is not doing nothing. Acceptance is not what happens after you've fixed someone to your liking. Acceptance is not throwing away all manners, education, skills, and coping strategies."
Acceptance is the Opposite of Giving Up by Real Social Skills
"Acceptance isn't about denying that some aspects of disability can be awful, and it's not about categorically rejecting medical treatment. It's about working with yourself rather than against yourself, and pursuing life now rather than waiting for a cure."
The people who show me the difference between awareness and acceptance by Karen Copeland
"When I think about our champions, I realize they, too, accept our child and our family for who we are. They help us identify our strengths and our gifts. They encourage us to embrace our challenges and meet them with strength and confidence. They let us know it's OK to be different and do things differently...You see, it wasn't until we started accepting our child for who he is--his strengths, gifts, and challenges--that we started to experience success. It was when we stopped trying to make him become who we...wanted him to be that the real change started to happen."

Why autism acceptance? by the Autism Society
"Acceptance...is the first step to building true understanding and inclusion...individuals with autism are and should be recognized as valuable members of our families, schools, workplaces, faith communities, and neighborhoods...Acceptance reinforces that not only do autistic individuals have equal rights, but they are equal in worth and have just as much value to society as any other member."
"Acceptance isn't passive. Acceptance isn't 'giving up.' ...Acceptance is looking at your child and seeing exactly who they are...and loving them for exactly who they are right now. Acceptance means meeting your autistic child where they are right now, accommodating their needs and growing their strengths, so that your child can grow up to become a happy, healthy autistic person who can trust and love the people around them."
Don't mourn for us by Jim Sinclair (a classic)
"You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist... We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."

"These are some reflections that helped me reach a place of peace and optimism and perhaps can be of benefit for others, too."
Your Children are Listening by Unstrange Mind
"Your children are listening. Stop thinking about how hard all of this is for you and think about how hard it is for your children. You have the difficult struggle of raising a disabled child. Your child has the life-long struggle of feeling like they never should have been born."

Acceptance as a Well-Being Practice by Musings of an Aspie
"For most of my life, my view of myself was predicated on what I had achieved...my fragile self-esteem was buttressed by a constant need to outdo myself...Acceptance meant embracing myself as I am, in the present. It meant letting go of the idea that I would some day magically become a more competent, mature, socially adept version of myself. It meant acknowledging that I'm not perfect, and, more importantly, I don't need to be...Acceptance...means unconditionally embracing yourself as you are."
Focusing on Assets, Building on Strengths by Musings of an Aspie
"Imagine that child moving through school, trailing this long list of things he can't do behind him. That's twelve-plus years of people emphasizing what he's bad at and what he neds to fix. If he's lucky, he has at least one cheerleader in his corner, telling him what he's good at. Because when he sits down to fill out his college applications or goes for his first job interview, no one is going to ask him what his worst subject is or what he can't do. Transitioning into adult life requires knowing your assets. The tension between building on assets versus fixing deficits is at the core of what we face as autistic people living in a neurotypical world...My social skills are never going to pass for neurotypical...building on assets feels more doable, and ultimately better for my self-esteem. If I'm working from strength...I have a foundation, no matter how small, to build myself up from."

"If autistic people were accepted we would not need Autism Awareness Month." -Michelle Sutton


What is it like for a disabled person to be disabled? Why people (wrongly) assume disabled people have lower quality of life

Many people assume without reflection that people with disabilities have lower quality of life than others. Philosophers have a particularly troubling tendency to make this assumption1, as Silvia Yee points out in her fascinating review of a prejudiced bioethics paper by Robert Sparrow:

"Philosophical arguments that devalue the experience of living with a disability tend to be written without any discernable reference to the lived experience of an actual person with a disability." -Silvia Yee

Only a philosopher would have the hubris to make sweeping assertions about the quality of people's lives without even thinking of asking them if they agree.

Yet, laypeople make similar assumptions all the time. They do so, I think, because the way we normally try to imagine what someone else's life is like doesn't actually work for people whose lives are very different from our own, and completely falls apart when imagining the lives of people with disabilities.

Suppose you are looking at someone who can't walk and imagining what their life must be like. Most likely, you imagine your own life, only with walking removed. Of course, if you've been walking all your life and you suddenly can no longer walk, you can no longer do many things you enjoyed. You may not know how to find new ways to work, visit friends, run errands, and travel. Thus, life will seem narrower and unhappier, and you will assume the disabled person's life is as narrow and unhappy as you imagine it to be. But chances are, they will not agree. In fact, abled people consistently rate disabled people's quality of life and happiness lower than the latter rate their own2. An example would be this survey of 284 people with Down Syndrome belonging to national organizations, 99% of whom like their lives, 97% of whom like themselves, and 96% of whom like how they look. This suggests our approach to assessing their quality of life is faulty.

I am ashamed to admit that as a child who did not know anyone with visible disabilities, I made this mistake, so I know from the inside how it works. I remember wondering whether it would be sadder to be deaf and not be able to hear music or blind and not be able to see color! (Besides the obvious ableism here, I also completely misunderstood how being deaf works. Deaf people can usually still hear vibrations, and sometimes other sounds, and thus can still experience a lot of music, just in a different way than hearing people). The only thing I got right was recognizing that babies who can't talk yet, and show no evidence of thinking in words, are still thinking.

Anyway, the abled person here is making the same mistake as someone who pretends to be poor for a few months or a year, never having otherwise been poor, and assumes they have learned something about what it's like to be poor. (Such people are well-intentioned and do an excellent job of highlighting the ways society mistreats poor people; however, they are not experiencing these problems the way an actual poor person would). For example, actual poor people know all sorts of tricks for taking care of themselves without spending money that someone "playing poor" would not. Consider the strategy of buying your bread and produce at the end of the day from stock that is still basically good, but the shopkeepers would otherwise throw away. When someone who has been poor tells you about doing this, it seems obvious, but I would bet most people who haven't been poor wouldn't automatically consider this shopping possibility.

Just as someone "playing poor" doesn't know what it's like for a poor person to be poor, so someone imagining what it would be like to be disabled can't imagine what it's like for the disabled person to be disabled. And just as poor people resourcefully navigate poverty and lead full lives, disabled people find ways to work, make friends, have hobbies, and run errands. They just do so in ways others don't, and maybe couldn't imagine.

This is why, as Emily Ladau explains, disability simulations don't work.

Thomas Nagel3, in his brilliant essay "What is it like to be a bat?" points out that when we try to imagine what it's like to be a bat, we imagine what it would be like for us to be a bat. We add fur, or better hearing, subtract eyesight, imagine looking at things from above because we're flying, or inverted because we're hanging upside down. We have no other choice because we've only been us; we know no other way of being. But these additions and subtractions may have nothing to do with what it's like for a bat to be a bat. I don't know if Thomas Nagel thought of applying this distinction to people with disabilities, but it explains why disabled people's own assessments of their quality of life are always higher than abled people assume).

(This example suggests another point relevant to disabilities. Occasionally, as when thinking about savants or "troubled geniuses," we imagine what it would be like to be them by adding rather than subtracting. We might add "intense mood swings" or "divergent thinking" or "the ability to calculate large numbers in my head," although I doubt anyone without such traits can imagine them very accurately. But imagining-by-adding is no more realistic than imagining-by-subtracting. Vincent Van Gogh wasn't you with some extra creativity and mental illness tacked on, any more than an intellectually disabled person is you with IQ and academic skills subtracted away. So, don't make the mistake of thinking you're doing right by people with disabilities if you simply stop imagining-by-subtracting. The problem goes deeper than that).

The question, "what it's like for whom?" may seem like an academic issue when considering it in the context of an academic paper, but when you're assessing the value of a disabled person's life, it becomes anything but academic. You cannot imagine a disabled person's life simply by imagining what it would be like for you to suddenly have a disability. A disabled person's life is not your life with something subtracted, or even added. It is a different sort of life entirely. You cannot imagine it accurately; they are the experts on their own lives. But if you listen, if you practice empathy and imagination, you can learn something about what it is like to be them.

To see how these principles apply to attempts to simulate living with a disability (and why these are ableist as well as ineffective), see Emily Ladau's "I won't pretend that disability simulations work."

Brenda Rothman makes a very Nagel-like argument here, where she addresses fears that her autistic son might be "missing out" on "normal childhood experiences."
"Children with a disability do not have a life 'minus.' They have a life, period. It's their life. It's not some other child's life, their parent's life or their peers' life. It's their life."
Amanda Forest Vivian explains why insider and outsider perspectives on disabilities are so different here. Disabled people have integrated disability into their self-image in ways that non-disabled people haven't, and however they feel about their disability, that transforms how they view and talk about it.

These issues also apply to all sorts of people, not just those with disabilities. In "Imagining the Lives of Others," Paul Bloom outlines a paradox: we are fascinated by what others experience, but are in fact very bad at knowing what it's like to be someone with a very different life experience.  He, too, notes the limitations of attempts to take on other identities, like Norah Vincent's posing as a man in "Self-Made Man" and John Howard Griffin's disguise as a black man in "Black Like Me." Paul Bloom suggests that rather than give up on understanding others' experiences or put faith in simulations, we should listen to others' descriptions of their experiences with respect and humility:

"These failures should motivate a certain humility when it comes to dealing with the lives of others. Instead of assuming that we can know what it is like to be them, we should focus more on listening to what they have to say. This isn’t perfect — people sometimes lie, or are confused, or deluded — but it’s by far the best method of figuring out the needs, desires and histories of people who are different from us. It also shows more respect than a clumsy attempt to get into their skins; I agree with the essayist Leslie Jamison, who describes empathy as “perched precariously between gift and invasion.

...None of this is to say that the project of experiencing the lives of others should be abandoned. Under the right circumstances, we might have some limited success — I’d like to believe that novels and memoirs have given me some appreciation of what it’s like to be an autistic teenager, a geisha or a black boy growing up in the South. And even if they haven’t, most of us are still intensely curious about the lives of other people, and find the act of trying to simulate these lives to be an engaging and transformative endeavor. We’re not going to stop.

But we’re not good at it, particularly when the stakes are high, and empathic engagement is far too fragile a foundation to ground public policy. To make the world better, we shouldn’t try to put ourselves in the shoes of Eric Garner or anyone else. Our efforts should instead be put toward cultivating the ability to step back and apply an objective and fair morality."

1 If you want to keep your blood pressure at healthy levels, don't read anything by the notoriously ableist Peter Singer.
2 Morton Ann Gernsbacher, personal communication, 2014.
3 Ironically, while philosophers seem particularly susceptible to assuming they know what it's like for a disabled person to be disabled, the person who best articulates their fallacy is himself...a philosopher.