4/15/2014

The difficulties of early diagnosis: Insights from Sally Ozonoff

If you've read any early autism studies, you've probably heard of Sally Ozonoff.  At UC Davis's MIND Institute, and working with 11 other sites across the country, she heads up prospective studies looking for ways to diagnose autism earlier. At Northwestern yesterday, she gave an overview of her major findings over the past ten years.  What she said will disappoint people hoping for earlier diagnosis for their children (or wishing they'd been diagnosed earlier themselves), but will please those who see early diagnosis as leading to interventions that do more harm than good.

According to the latest CDC report, the average age of diagnosis is the same as it was two years ago--53 months (or about 4 1/2 years).  Yet parents are first concerned about their child's development at an average of 18-19 months.  Parent reports certainly have flaws, as most are not trained in child development and are looking at the big picture rather than the specific details of behavior that might provide the best clues (e.g., frequency of pointing vs. other gestures).  In particular, they might reliably distinguish a child with atypical development, but not be able to tell if autism is the appropriate diagnosis--even trained psychologists seem to have difficulty with this.  However, Ozonoff thought, if parents can identify potentially autistic children as early as 18 months, shouldn't psychologists with all their developmental training and research tools do at least as well?

The methods used for investigating the earliest signs of autism have changed.  Originally, there were two main sources of information: interviews with parents and home videos.  Parent interviews attempted to get the most detailed information possible by asking about "landmark events," memorable things that happened when the child was a particular age.  If a family traveled to visit the grandparents when the child was 12 months old, for example, the researchers would ask them to picture it and would ask if, for example, the child was toddling around the kitchen, or pointing to items of interest at Grandma's house.  The information provided seems to be accurate, but not fine-grained enough.  Home videos are better because you can watch the behaviors unfold yourself and count how often behaviors of interest occur.  However, they take hours to analyze, and videos may not include relevant, but less presentable behavior--e.g., Grandma will not want to see a video of Johnny failing to respond to his name twelve times in a row, or having a meltdown.  So now, Ozonoff's team takes a different approach.  They identify so-called "high risk siblings," babies who have an older ASD sibling.  The matched control group is babies who have no first, second, or third degree ASD relatives (that means no grandparents, aunts, uncles, or cousins--which is increasingly hard to find these days).  These babies are first seen at 6 months old, and are followed up at least at 12, 18, 24, and 36 months.  At 36 months, all are tested for ASD or other atypical development and assigned to a diagnostic category.  This approach allows Ozonoff's team to retrospectively look at how ASD children developed over time, and at what point they first diverged from peers with typical or other atypical development.

The biggest problem for such research is separating ASD babies from other atypically developing peers, so let's talk about how "other atypical development" was defined.  First, babies who were within 3 points of the ADOS cutoff for ASD, but still below it, were "atypically developing."  Second, babies who scored at least 1.5 standard deviations below the mean on cognitive, verbal, or motor skills on the MSEL (a standardized direct observation test) were atypically developing.  The resulting group could be expected to be a heterogeneous mix of children with subthreshold autism traits and those with various developmental delays or learning disabilities.

I had expected Ozonoff's team to look only at socially relevant behaviors (things like eye contact, looking at faces, responding to name, joint attention, etc.).  However, they cast an impressively wide net.  They looked at sensory and motor skills--babies' abilities to gradually follow a moving object with their eyes (called "smooth pursuit"), and their ability to integrate auditory and visual information when listening to speech. Even head circumference was measured.

Unreliable Early Markers
Most of the measures examined didn't differ in high and low risk babies.  For example, high risk babies were just as responsive as low risk ones to the "still face" paradigm, where parents interact normally with their babies for a while then suddenly stop interacting, with a completely blank face.  Babies, who were previously smiling and making eye contact with the parent, now start looking away, losing positive affect, and sometimes become distressed.  When the parent returns to playing with them, though, babies normally return to making eye contact and smiling at the parent.  High-risk babies, as a group, show the exact same pattern.

Another behavior looked more indicative of autism, but didn't pan out.  High risk babies were more likely to look at the mouth than low risk ones, who looked at the eyes1.  However, although 10 out of 11 kids (91%) who focused on the mouth were high risk babies, most of the high risk group still looked mostly at the eyes.  Furthermore, none of the mouth lookers turned out to be autistic, with most typically developing.  Meanwhile, all four with ASD tended to look at the eyes rather than the mouth.  While looking at the mouth does not predict autism diagnosis, but it does predict expressive language skills, on both a direct test (MSEL) and a parent questionnaire (McArthur CDI).  (This is a pretty common relationship in autism language research, but Ozonoff said that as a clinical psychologist, she was unaware of it.  She talked a lot about being a clinical psychologist and how she hoped to get other perspectives from her hosts in the Northwestern Communication Sciences and Disorders department).

Ozonoff's team also looked at children's response to their name, because this is the most common concern parents have.  Again, it wasn't a reliable marker.  Again, high risk babies were more likely not to respond to their name than low risk ones, but only 14 high risk babies failed out of 101 (14%).  Of these 14, 5 turned out ASD (36%), 6 (43%) atypically developing, and 3 (21%) typically developing.  Meanwhile, this marker missed 4 ASD and 22 atypically developing babies.  The best thing one can say about failure to respond to name is that it can identify atypical development in general (80% of such children are atypically developing), but not ASD in particular.  And even for atypically developing kids, most were not identified this way.

So, at what point were researchers able to distinguish the autistic babies?  There were no group differences at all at 6 months, and differences on almost every measure by 12 months.  Even so, only one baby was diagnosed at 12 months, 15% by 15 months, and under half by 18 months.  The average age of diagnosis was 24 months--about the age at which these experienced clinicians would feel comfortable making a diagnosis anyway.

What changes from 6 to 12 months in autistic babies?
The change from 6 to 12 months was dramatic enough that Ozonoff's team explored further with their another group of babies, adding an observation in the middle at 9 months.  Here, she found the only significant results so far.

At 6 months, ASD babies looked, smiled, and vocalized at parents and experimenters just as much as their peers.  However, from 6 to 12 months, their frequency of looking dropped steeply, their smiling declined slightly, and their vocalization remained the same.  Meanwhile, typically developing babies dramatically increased their rates of looking, smiling, and vocalizing at interaction partners.  This pattern existed across the entire group, not just the roughly one third estimated to have lost language or social interaction skills.2  Furthermore, this finding was based on a direct count of looks, smiles, and vocalizations during a real-time interaction, not a standardized measure--it captured the behavior itself, not just the relative frequency compared to a normative group.

Experimenters and parents were asked to rate their child's frequency of looking, smiling, and vocalizing at the end of each session based on general impression.  Experimenters reported the same drop as the coders did, and so did 71% of parents.  Interestingly, 29% of ASD parents reported rates of looking, smiling, and vocalizing that stayed the same from 6 to 12 months, and did not differ from ratings for typically developing babies.  Ozonoff's team assumed these parents were simply bad reporters, as these babies ended up with a diagnosis of ASD, but this is a problematic assumption and we'll talk about why later.

A similar pattern held for synchronous behavior, which was defined as either looking/smiling/vocalizing at each other at the same time, or responsively (with the response following within 3 seconds).  In fact, at 6 months, ASD babies were more in sync with their parents than typically developing peers.  By 12 months, however, ASD babies were less synchronous while typically developing babies had become more so; typically developing babies were now more synchronous than ASD ones.

There's another difference that I, personally, find more interesting.  At 12 months, babies were given a variety of toys to play with, including a shiny round lid, which had two sides that looked different from each other.  Typically developing babies, given that lid, liked to put it on their face or in their mouth, drop it, or bang on the table with it.  They seemed to enjoy the noise this made, and be focused on how the object felt, moved, and sounded rather than how it looked.  They also were less focused on the toy, looking more frequently at the experimenter and around the room.  ASD babies were more focused on the toy, with fewer looks elsewhere; they were more likely to attend to it without interruption for 10 seconds at a time.  They also had a different pattern of playing with the toy.  Unlike the typically developing babies, they actually noticed that the two sides of the lid looked different.  They were more likely to rotate the objects to stare at the different sides; more likely to hold it up close and squint at it; and more likely to spin it, or drop it and watch it wobble. In addition to this set of visual behaviors, they still engaged in the more tactile and auditory play behaviors the typically developing babies preferred.  Each of these visual behaviors, and their composite, were highly predictive of group membership; crucially, they were much less common in other atypically developing babies (but given the low base rate of autism in the population, this is still unlikely to enable reliable early diagnosis).

The differences in play here were fascinating because they are among the earliest evidence of autistic people's fascination with visual stimuli, particularly things that spin.  The differences from other atypically developing babies also surprised me, because atypical sensory processing occurs across all developmental disabilities.  It would be interesting to know whether, across the lifespan, fascination with shiny, spinning things really is more common in autism than in other conditions with atypical sensory processing.

The problem of distinguishing ASD babies from atypically developing ones...again
Atypically developing kids could be identified either by developmental delays on the MSEL, or by high but subthreshold ADOS scores.  76% were identified based on high ADOS scores, 14% on high MSEL scores, and 10% on both--meaning that 86% could be considered to have the "broad autistic phenotype" and only 24% could be considered developmentally delayed.

Such a group makes it all the harder to separate autistic from other atypically developing kids early on, because the autistic kids aren't a different type of disabled child, they just have more extreme versions of the same traits.

Are atypically developing kids just autistic kids who received early intervention?
The atypically developing group's rate of early intervention wasn't significantly different from typically developing participants.  This was despite Ozonoff's team's aggressiveness in informing their parents about the risks of ASD diagnosis and the benefits of early intervention for this group. Thus, these children's failure to develop ASD has nothing to do with being helped by early intervention.  This is a point you're not likely to see discussed much--Ozonoff herself only brought it up in response to a question about diagnostic reliability in her studies--so I think it's important to emphasize.

Questions and Problems
1. How unreliable are parents, really?
Almost 30% of parents of autistic kids rated them as displaying the same rates of basic social behaviors as their typically developing peers.  Ozonoff assumed these were poor reporters because these children were later diagnosed with ASD.  But she did not say whether she examined the measured rates of social behaviors in these kids to see if there actually was any difference.  And in fact, it's possible that these kids really did have high rates of social looking, smiling, and vocalizing, while still being autistic.  There are several ways this could happen.

First, these babies could have mastered these particular social behaviors, which are early developing and do not require complex motor skills or advanced concepts.  Yet, they might have more difficulty with other skills measured by the ADOS, such as pointing, triadic joint attention (between a person and an object), or conversation.

Second, the babies could have been inconsistent, as often occurs in atypically developing populations. Whatever their real level of social communication skills, they performed well in one context (interaction with parents or experimenters) but not in another (the ADOS examination).

Third, the babies could have diverged from typically developing kids in social communication behaviors later than 12 months.  They may have had typical social behaviors at 12 months, but different enough to receive an ASD diagnosis by 36 months.

This would appear to be a case where the assumptions of a discipline (i.e., that clinical psychologists, as experts, know more than poor, ignorant parents) get in the way of a truly scientific examination of a question (i.e., testing other possible explanations for an inconsistent set of results).

2. The definition of synchrony
First, the good news.  Unlike the "reciprocity" studies I've discussed in an earlier post, this study did measure the behavior of parents as well as their children.

The bad news: synchronous behavior was defined as either displaying a social behavior at the same time as parents, or as a response within 3 seconds.  But what if ASD babies are slower to respond?

This could be for any number of reasons.  If they are focusing their attention on one thing (perhaps a toy both are playing with), they may be slow to shift their attention to something else.  Slow shifting of eye movements and attention have often been found in autistic kids and adults, as discussed in a previous post.  If they have to shift their attention first, that could delay the response.  Second, slow responses in general sometimes occur in autism, particularly when speech is required.  These 6-12 month olds aren't using speech.  But if vocalizations for them work in a similar way to speech for older people, one might expect their responses to take longer than 3 seconds.

So, are ASD babies really less synchronous at 12 months?  Maybe.  I'd be more confident in this result if the time window for response were a little wider.

3. Assumptions I don't like
Like many clinicians--including most of the audience at her talk--Sally Ozonoff assumes that any early intervention is a good thing, no matter what it consists of. That if early enough, intervention can even prevent all the characteristics of autism from emerging at all.

She is obviously not familiar with the borderline abusive therapies that some children receive, perhaps because there is little awareness for bad autism interventions.

She also loves the Autism Speaks parent kits, particularly the "first 100 days" one, and actually recommends them to parents.  Full disclosure: I have been working with parents and autistic adults to make an alternative that would be more helpful, and less depressing.

The Upshot
In this study, children received a diagnosis at an average of 24 months, which was a lot earlier than in the general population (53 months).  However, with all the behavioral and electrophysiological data they collected, they still weren't any faster than they would have been using clinical judgment alone.

She's been studying high-risk babies since 2003.  All this time and money has brought us nowhere near having a method that could be widely used to identify autistic babies and toddlers, much less distinguish them from similar atypically developing kids.  At this point, the effort seems almost pointless.

There is, however, one exception.  Babies with an autistic sibling have much higher rates of an autism diagnosis.  Across the 12-site Baby Sibs Research Consortium, which tested 664 high-risk babies, 19% were diagnosed with ASD.  The rate was particularly high in males, with about 25% of males and only 9% of females receiving an ASD diagnosis.  The rate was higher still in families with multiple ASD siblings, where almost 50% of males and about 18% of females diagnosed with ASD.

Interestingly, all sorts of much-touted risk factors didn't make a difference in this large sample.  The sex and functioning of the older ASD siblings didn't matter.  The younger sibling's age at enrollment didn't matter.  The birth order, parent age, and demographic variables--even ethnicity and SES3--didn't affect diagnosis rates.  Only the child's sex and the number of ASD older siblings mattered.

Therefore, Ozonoff argued, we should be paying more attention to screening younger siblings than we are, especially boys and those with multiple ASD older siblings.  Pediatricians should know that the ASD rate is much higher in this group and watch their development particularly closely.4

So there you have it: early diagnosis is nowhere near existing in reality, except, perhaps, for younger siblings.
...
1 Notably, Ozonoff's study measured looks to the face in this and the still face paradigm in an unusual and somewhat artificial way.  The mother was in another room and her face was projected onto a screen in front of the baby, so that a camera could more easily measure where the baby was looking.  Most babies still had typical responses to the still face in this setup, which suggests that they still thought they were interacting with their mothers.
2 This particular study did not measure regression, but Ozonoff reported that other studies estimate it at about 1/4-1/3 of the autistic population.  
3 The lack of ethnicity and SES differences in diagnostic rates surprises me.  It may be due to the fact that participants were recruited with diversity in mind, with a concerted effort to sample ethnic minority groups.  It could be due to a lack of SES diversity--the sample, though ethnically diverse, was mostly middle-class, and the restricted range may have precluded finding an SES effect.  It could also be due to the fact that participants were recruited from an area around three major California universities, where autism awareness is high and participants were likely to receive a diagnosis.  Or, it could stem from the MIND Institute staff's thorough diagnostic evaluation process, which was uniform across participants, regardless of their ethnicity or SES.  One should not expect this lack of ethnic and SES identification bias in the general population.
4 There is one other group that might be worth screening early: those with older siblings with related diagnoses, such as ADHD or specific language impairment (SLI).  However, Ozonoff did not discuss this group, compare their elevated risk of autism diagnosis to that of those with autistic siblings, or recommend more aggressive screening for them.

4/01/2014

Why I use "autistic" rather than "person with autism" + an indexed overview of the debate

It's Autism Awareness Month, and I'll be trying to promote understanding and acceptance on Twitter.  Hopefully, some of the tweets will reach people who don't know me.  Some may be confused or put off by my use of "autistic people" rather than "people with autism." If that's you, welcome!  I wrote a blog post for you because this is a complex issue not easily discussed in 140-character bites, for reasons I'll explain momentarily.

If you're new to the autism community, you're familiar with other disability groups, or you've worked in education/social service fields, you might be used to saying "person with autism," and you might be disconcerted at all the people referring to themselves, family, and friends as "autistic" or "autistic people."  You might see person-first language ("person with") as more respectful, and wonder why I or anyone else would want to use different language.

It might seem obvious that "person with autism" is the most respectful term to use, especially because many disability groups do prefer it, and many government agencies insist on it.  But not all disability groups are the same, and many people on the spectrum (and their families) are choosing different language.

Yes, it's a deliberate choice.  And it's not because people on the spectrum don't know better.  Having lived with a disability/been disabled their whole lives, they're intimately familiar with issues of stigma and ableism. No one has more of a vested interest in respecting the personhood of people on the spectrum than...people on the spectrum.

And for them, the issue of terminology is complicated.

The majority prefer identity-first language ("autistic people" or "autistics"), but some people prefer person-first language ("person with autism"), and a smattering of other labels exist:
Some people feel very strongly about calling themselves Autistic (with a capital A), others like to be referred to as a person with autism, and still others like to say they’re on the autism spectrum. Others like to be called Aspie or AspieGirl. Some say they have autism. And then there are less common labels such as a person with awe-tism, spectrumite, or Aspergian. Steven Coventry has art that goes along with his preferred label of Aspienaut.  Some like Erin Clemens don’t care about the terminology at all, as long as people are respectful. Elena Mary Siff says her son prefers no label and just wants to be seen for who he is. Some like Carolyn Gammicchia want to be called by their first name...As Dennis Debbaudt states “...My son refers to himself interchangeably as having autism, I’m autistic, I have autism…” -Debra Hosseini
 However, all agree that the person being labeled is the one who should decide what label is appropriate.

Person-first language is supposed to make people focus their attention on the person, and not focus it on their disability.
”Person with autism” puts the person first and the disability/condition last. Autistic person puts the condition first, as if its the most important part of the person. -anonymous, quoted by Aspergers and Me

My son has autism rather than my autistic son. He is not autism, it is just a part of who he is. He was a person before he was a disability. -anonymous mother, quoted by Aspergers and Me''

When we start by focusing our attention on what people cannot do, we never make room for what they might do. By putting the person last, this is what is being done...We assume they will never do for themselves, so how can they ever be a productive member of society? -Mary Tobin 
Many people object to this line of thinking for the following reasons:

1) There is no incompatibility between being a person and having a disability, but the need to deliberately emphasize personhood implies that there is.  It is wrong and ableist to think that having a disability makes you less of a person.  To use language that assumes a dichotomy between the two is to tacitly accept that there is one.
The dichotomy between being a person and having a disability is a false, and useless, one. It's based in the notion that people with disabilities that they can't hide or that we can't pretend to ignore aren't people. -Julia Bascom

the idea that one has to choose between seeing the person and seeing the disability. Why should that be a choice?...Such language betrays the assumption that disability renders one less of a person. If that assumption were not present, there would be no reason to foreground the fact that we really, really, really are people, and that one has to put the disability aside in order to see how really, really, really human we are. -Rachel Cohen-Rottenberg

When you tell me you see me as a person first, I’m confused.  Did you not see me as a person before?  Can I not be disabled and a person?  Am I not a person unless you stop seeing my disability? -Fogwithwheels  

When we have no particular issue with some aspect of a person, we do not make sure they understand we are aware they are part of the human race. -Ariane Zurcher

I don't have autism. I am autistic. This is important to me. It also doesn't mean that I "see myself as a disability first and a person second," whatever that is supposed to mean. In my eyes, I'm Julia. Just Julia. -Julia Bascom

2) Person first language assumes that a person and their disability can be cleanly separated, perhaps the way a person with cancer can be separated from the cancer.
You would never describe someone as “cancerous”, you would say they have cancer. Cancer is not how you define the person. If you had a permanent bruise on your shoulder, would you always want to be called “the bruised lady”? -Katie Nelson
Developmental disabilities don't work that way, though, especially ones like autism that affect how you perceive, move, think, feel, and behave from birth.  The way you experience the world and respond to it are fundamentally different if you have an autistic brain.  In this way, autism is similar to other identity markers that affect how we perceive, think, feel, or behave, such as country of origin, ethnic background, or sexual orientation.  We see no harm in talking about "Iraqi people" or "Iraqis," "African American people" and "African Americans," "bisexual people" and "bisexuals" so why not "autistic people" or "autistics?"

when people say "person with autism," it ...suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin. -Lydia Brown

I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works. -Jim Sinclair

I cannot separate out which part of my brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM.  Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism...being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked AUTISTIC. -Julia Bascom

I prefer aspie or autistic person. I cringe at ‘person with autism’, because it makes it sound like the autism is detachable from me. I consider autism just as inherent to my personality as my sense of humor or my IQ. -anonymous, quoted by Aspergers and Me 

The phrase “person with a disability” seems like something that you’d find on packaging for action figures...“person with a disability” sounds like “Magneto action figure with detachable cape” – like the disability is an extra that comes with the person, but not really a part of that person. Lots of disabled folks and communities have valid reasons for wanting people to use person-first language...and I respect that. However, when non-disabled people insist on only ever using person-first language, I often feel like it’s because they don’t want to play with the action figure until they’ve detached the disability, so to speak. -Zoe

The assumption that you can separate a person from their autism is hurtful both because it rejects who the spectrum person currently is and because, at present, there is no way to make the separation.  So person-first language communicates that not only is a person's way of experiencing and behaving unacceptable now, but the person can never be completely acceptable to the speaker.  It's not intended as a rejection, but often has that effect anyway.

The overwhelming message of “person-with-autism” is always “we wish we could really remove the autism from you, because it’s offensive, and we’re sure you’d be more acceptable without it.” Of course, it can’t be removed. At least not in the near future. So, until then, the autistic is stuck with his unacceptableness, no matter how kind and apologetic the label appears to others.-Turtlemoon

When parents insist on pushing this language onto their children, it's even worse, because the parents are saying that they want the child to view him- or herself as someone apart from the perceptions of their senses, their emotions, and their rational thinking, all of which are inextricably part of the autistic experience. That who we are is something other than anything we think or feel or experience, and that those other things should not be considered important or articulated. They are saying that what makes the child valuable is that he/she is a child, but that their thoughts, feelings, and ways of making sense of the world are not only non-valuable, they are only an afterthought. Rather than putting the person first, "person-first" language removes autism from the spectrum of human experience.-Michael Monje Jr.

3) People often criticize identity-first language because they interpret "autistic" as meaning that autism is the only quality a person has, or the most important quality, or that the person somehow reduces to autism.  I'm not sure why they interpret it that way, but that's not what people mean when they use "autistic."  It's meant to be interpreted like other adjectives that describe characteristics, such as "nearsighted" or "lesbian."  "Nearsighted people" are not reducible to their nearsightedness, and "lesbians" are not reducible to their sexual orientation.  People who use identity-first language do not think autism is all a person is, just an important part.
being Autistic is as much a part of our individual identities as being American, Christian, or Asian are for me. I do not refer to myself as a person with Americanness, Christianess, or Asianness, and thus I am not a person with Autism either. It is not an inherently good or bad thing to be American, Christian, or Asian, nor is it an inherently good or bad thing to be Autistic. It is simply a part of my identity. Autism is not something from which I can or ought to be separated.-Lydia Brown

I am no more defined by my autism alone than by my hair color, and yet no-one ever questions it when people are refered [sic] to as, say, blonde. If autism wouldn’t be viewed as something less than, people wouldn’t find “person with autism” to be the more respectful term. -anonymous, quoted by Aspergers and Me

The attack that calling someone autistic, means you are ignoring the person behind the autism, is a presumption that the autism and the person are separable, which is not self-evident. It is also a presumption that calling someone autistic means we have forgotten the rest of their identity. This is rather absurd; it would be like saying that calling someone “Christian” means you have forgotten their gender, their hair colour, their relationship status, etc. This idea – that calling someone autistic appears to cancel out other aspects of their identity – again seems to turn on the notion that knowing or seeing someone as autistic, damages or hurts them in some way. -Autism and Oughtisms

When disabled people, Autistic and non-autistic, say that they use identity-first language to refer to themselves, a common retort is “I don’t understand why you would define yourself by your disability.” To me, this doesn’t make sense. I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs. -Zoe 
People who use "autistic" also argue that autism can be worth acknowledging without being the most important part of a person.
They seem to be saying that if I say “autistic person” then I’m claiming that it’s the only quality a person has, or that the person IS autism in some weird, existential way. However, the bit I really find interesting is the claim that “autistic person” is implying that the autism is the most important part of a person.  The thing that strikes me about that is that the english language does not work that way. We use adjective-noun pairings, so the emphasis is actually on the second word, not the first. If I describe a color as being “bluish green” do you visualize something that is closer to green or closer to blue? What if I say “greenish blue”? In English, the first word is a descriptor or modifier of the second word, not the other way around. -Aspergers and Me

Saying “person with autism” suggests that even if autism is part of the person, it isn’t a very important part. Characteristics that are recognized as central to a person’s identity are  appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about “male” and “female” people, and even about “men” and “women” and “boys” and “girls,” not  about “people with maleness” and “people with femaleness.” We describe people’s cultural and religious identifications in terms such as “Russian” or “Catholic,” not as “person with Russianity” or “person with Catholicism.” We describe important aspects of people’s social roles in terms such as “parent” or “worker,” not as “person with offspring” or “person who has a job.” We describe  important aspects of people’s personalities in terms such as “generous” or “outgoing,” not person first language as “person with generosity” or “person with extroversion.”Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies.-Jim Sinclair
As Alyssa points out, those who prefer person-first language (usually parents or other family members) still have some intuitive understanding of autism as a trait and an adjective.  Some call themselves "autism parents," "autism moms," or "autism siblings."  They appear to recognize that the adjectives we put in front of ourselves are important parts of who we are and how we want others to see us.  Of course, raising a child on the spectrum is an important part of who they are. So, what happens when parents recognize "autism" as a part of who they are, but not who their child is?  Whether on purpose or not, this amounts to telling the world to view autism as more essential to the parent than to the child of whom autism is actually a part!  Whether you view autism as a good, bad, or neutral characteristic, this is obviously absurd.

4) Because autism affets a person's life so pervasively, drawing attention away from the disability, as person first language tends to do, is a lousy idea.  Insisting on seeing a person while also ignoring their autism/autisticness invites one to wonder whether other reminders of disability--such as attempts to discuss the impact of autism on one's life--will also be ignored.

If one is not supposed to talk about autism, then how can one talk about vast swaths of experience, or deal with problems that arise in daily life? How can one explain in a work context why one can network, but not in a noisy, crowded bar?  Or to a partner that deep pressure feels good but light touch makes one want to jump out of one's skin?  Differences exist, and will be visible whatever terminology we use--just as a wheelchair exists, visibly, whether we talk about it or not.  And if atypical behavior is left unexplained, other people will come up with much more sinister explanations.

Ignoring disability doesn't stop us from feeling different. It just makes us feel like our differences are too shameful to acknowledge. -Real Social Skills (@rsocialskills)

If autism is an important characteristic and an important part of people's identities, then potential friends cannot simply ignore it.  To befriend a person while ignoring a characteristic that's an important part of their identities is not a full, real friendship, but always a partial and conditional one.  You're not friends with the real person, but with the person you want them to be.  People who prefer identity-first might make the following analogy: if you accept everything about a person except that they're gay, are you really accepting them?  If you accept everything about a person except that they are African-American, have you really accepted them?  If you accept everything about a person except autism...
Person-first language doesn't put people first, it makes them invisible. -Michael Monje Jr.

5) Even if it were bad to draw attention to a disability, person-first language doesn't prevent this.  If anything, it's clunky sentence structures draw more attention to the disability, and the need to use a euphemism implies that it's something that needs to be hidden.
 Rather than taking the emphasis off my condition, it makes it more conspicuous by creating a wordy, unwieldy construction in the language that is harder to say, requires more conscientious use to maintain consistently, and worst of all, makes autism a passive characteristic (both grammatically and as part of my life) rather than an active adjective. And my autism is active. -Michael Monje Jr.

By using this language,...it sounds like we need to apologize for being Autistics, reminding the rest of the world that we are “people too.” The message is that, if we say that we ”have autism” we might look “a little better” not so “broken.”  I am not broken.-Amy Sequenzia

If disability is nothing to be ashamed of, why do people keep making up euphemisms for it? -@aspergiajones, author of Letters to Aspergia

You might be asking, but aren't there good things about drawing people's attention away from a disability?

Of course.  The person using person-first language probably understands that one can have a disability and still be fully human.  But not all listeners will feel that way.  For people who are already uncomfortable with disabilities, using "autistic person" might reinforce their discomfort, while "person with autism" might remind them of the person's humanity.  That might be why some parents call their child a "person with autism," to protect their child from the audience of people-in-general who know little about autism and are uncomfortable with disability.  They might be hoping that using person-first language will make the general public more likely to treat their child as a person.
a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him." -anonymous mother at the 2011 Adult Services Subcommittee meeting, quoted by Lydia Brown

 What I won't do is I won't let myself refer to him as my autistic son because...I don't want the big word to eclipse his greatness because he is SO much more than the autism that affects his wiring...In the educational setting, which is where I mostly reside, [using the word "autistic"] leads to a shut down of expectations and damage to the individual. -Autism Sparkles

 But whose opinion towards autism matters? If you’re worried about society’s attitude towards autism – you know it’s not the end of the world but society thinks it is – then you may push for the “has autism” designation. But if ...you want to change it, you might actually encourage people to use “autistic” as a show of pride and intentional ownership of the supposed trait. -Autism and Oughtisms
It's important to acknowledge that in this situation, person first language isn't really for the spectrum person's benefit, at least not directly.  It's for the general public's beneit.
I think able-bodied people need euphemisms to help them get over their discomfort with disabled people. -@RobertHWoodman, 3/29/14
People on the spectrum certainly have the option to protect themselves by choosing person-first language, just as parents do.  Many of them choose not to anyway.  I'm not sure why, but I would guess it's because accommodating people's prejudices isn't reliable protection. Using person-first language might distract people from their underlying attitude that visibly disabled people aren't fully human, but it doesn't change those attitudes.  Being on the spectrum is likely still dangerous no matter what a person is called.
If I say that I am autistic and that means that you can’t see the individual intertwined within? That can’t be undone with a phrase such as “with autism.” -Jean 
Either way, the person on the spectrum is the one most hurt by others' prejudices, and thus the one who should decide whether to accommodate them with person first language.*

Which brings us to the final and most important point:

Ultimately, the final decision must lie with the person on the spectrum who is affected, not the person addressing them.  Their brain is the one being described, their identity is the one at stake, and they are the ones who must live with any social fallout from how they are labeled.

That doesn't mean one shouldn't have a default term.  I personally use "autistic people" because so many people I know prefer it. But if I met someone on the spectrum who prefers "person with autism," I would be wrong to insist on my default.  I'd be just as wrong as a person calling someone who prefers "autistic" a "person with autism."
if someone with a disability is telling you how they want you to refer to them, the most disrespectful thing you can do is tell them they are wrong and that you know better. Do you want to respect autistic people and look at them as people rather than afflictions?  Then listen to them. Hear what they have to say. Don’t argue with them and tell them they are wrong for stating their preference about how people talk about them. That is the least person-first thing you could possibly do. -Jean

It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way...Part of respecting my agency is respecting how I wish to identify, even if you don't like it. -Kassiane

When a person has a clear preference, other people should respect it. If they don't, they are being disrespectful, whether or not they are also saying how much of an advocate for people with disabilities they are. -Paula Durbin-Westby

When very well-meaning and well-intentioned advocates...such as yourself insist that we use certain language to describe ourselves against our own stated and explicitly argued wishes, you are essentially telling us what offends us. -Lydia Brown


we should not have to deal with being “corrected” by allistic people, or have our preferences ignored in the name of “respect.” (For the record, it is not respectful to deny a person the right to self-identify. It is, in fact, quite disrespectful.)-Aspergers and Me

And when we fail to respect the preferences of the person we address, it causes real harm and contributes to social problems that affect autistic people in general.
we live in a society that is really bad about giving people with disabilities any sort of self determination at all, especially people whose disabilities are developmental. Autism is one of these. That means autistic people are going to be extremely touchy about anything that even smells like taking away self-determination, and not respecting language choices is one of those things. - See more at: http://yesthattoo.blogspot.com/2012/07/seriously-guys-pfl.html#sthash.cAAgKjz2.99BXFjmB.dpuf
We live in a society that is really bad about giving people with disabilities any sort of self determination at all, especially people whose disabilities are developmental. Autism is one of these. That means autistic people are going to be extremely touchy about anything that even smells like taking away self-determination, and not respecting language choices is one of those things. -Alyssa

This person actually directly told Lydia (Autistic Hoya) that she was wrong to use the term “autistic person” and that it is more respectful to say “person with autism.” This person told an autistic person that the way they identify is incorrect, refused to respect both her choice and the general autistic culture, and insisted on using a form that most of us do not prefer... I find this to be yet another example of how autistic people are consistently pushed out of our own advocacy...it should also go without saying that autistic people should be included in our own advocacy, and our voices should be heard. Yet all too often, we are not included, and our voices are not heard. -Aspergers and Me
we live in a society that is really bad about giving people with disabilities any sort of self determination at all, especially people whose disabilities are developmental. Autism is one of these. That means autistic people are going to be extremely touchy about anything that even smells like taking away self-determination, and not respecting language choices is one of those things. - See more at: http://yesthattoo.blogspot.com/2012/07/seriously-guys-pfl.html#sthash.cAAgKjz2.99BXFjmB.dpuf

I think respecting people's label preferences is putting the person first, whatever they choose to call themselves.

*You may be thinking of exceptions.  There are a few, but not as many as people think.  For example, some children are very young and not able to make this decision yet.  In this case, their parents must make an educated guess what they'd prefer. Some people don't have a strong preference, but there's no way of knowing who will or won't.  It's best not to make assumptions, and just let people tell you if they do.
 ***
This topic touches a nerve and a lot of people have written about it, more than I could discuss here.  So I've collated all the posts on the subject I could find, both to show the range of opinions out there and to allow those interested to go into depth.  If this list is incomplete, please let me know what posts I missed.

People Who I Know are Autistic
 People who as far as I know are not autistic











3/10/2014

#StopCombating Me: Changing The Paradigm from Treatment to Education

Note: This blog is part of a flashblog for #StopCombatingMe, a petition to ask Congress to reform the Combating Autism Act or let it expire.  The petition itself is here and the flashblog information is here. The purpose of the petition and the flashblogs are to change the focus of autism policy from "combatting" a "disease" to integrating, and providing appropriate services to, people with a disability.  Instead of spending the majority of the budget on genetic research aimed at preventing autism, we aim for an approach that better serves the autistic people who already exist: more services and service research; more focus on access to education and careers; and coverage of adolescents and adults as well as young children.

I am no political expert.  All I know is that autism programs are currently based on a faulty paradigm that needs to change....

I want to see the paradigm of autism programs change from "treatment" to "education."

Currently, there are many educational programs aimed at making autistic children less disabled and better able to function in the world.  These include DIR/Floortime, ABA, the Early Start Denver Model, speech and language therapy, occupational therapy (for sensory, motor, and daily living skills), and more.  These programs often bill themselves as "treatments," and parents are encouraged to start as early as possible while their children's brains are most plastic.  Some practitioners even hold out the possibility that students may end up no longer fitting the criteria for an autism diagnosis--like the children in the much-hailed "optimal outcome" studies.  But if you look at what these programs actually do, they're not cures.  They're not even really "treatments" at all in any medical sense--for example, no medications or surgeries are involved.*  These programs just use highly-specific methods to teach skills.  For example, ABA is the use of behaviorist methods to teach skills that matter to parents and teachers.  All of these are simply glorified educational programs. 

So why don't we just admit these are educational programs and treat them that way?

Because when we don't, when we treat autism as a disease and these programs as a medical treatment, we open the door to abuse.  In this paradigm, no one asks what purpose autistic behaviors serve (because even self-injury has purposes), or whether indistinguishability is a worthwhile goal

So therapists order children to look them in the eye, even though it makes them feel uncomfortable and when they're looking, they can no longer understand what the therapist is saying.

Therapists call for "quiet hands," preventing autistic children from communicating and denying them the attention they need to focus on learning

Therapists take away children's communication outlets because children are "stimming" on them when in reality, they are babbling and playing with language. 

Therapists move children's bodies and without asking, put their hands over children's to make them perform desired tasks (called "hand over hand").  Then they punish children for "non-compliance" when they say "no."  These practices teach children that their bodies are not their own and erases their boundaries, leaving them vulnerable to physical and sexual abuse

Therapists prevent autistic children from engaging in their passionate interests so they can have more time to work on their weaknesses.  Instead of teaching parents to hone and value these interests as the gateway to educational and career success, therapists tell parents these are meaningless "stims" that should not be encouraged

Therapies designed to teach "social skills" teach how to be kind and follow "social rules," but not how to deal with real-world social interactions where other children are not kind and can get away with breaking the rules

Children exhaust themselves in a noisy, unpredictable, and isolating school environment, then come home to at least 20 more hours of drill on tasks they find difficult, exhausting, and perhaps pointless--and are denied the time to play, use their imaginations, and connect with their families.

Autistic adults who have experienced these kinds of therapies call them abusive. Not all individual therapists or programs are like this, of course.  But when we see programs through a "treatment" lens, as a sort of bitter medication autistic children must take to "get well," it doesn't even occur to us to ask whether we would subject a typically developing child--or ourselves--to the same treatment.

Yet we know enough about education to know that these are not good teaching methods.  We know from educating typically developing children that kids learn best when:
  • Their strengths and interests are acknowledged and valued.
  • They themselves are valued, and seen as real, full people, not just a brain in a vat or a collection of deficits to be remedied. They learn best in the context of relationship.
  • Teaching methods are adapted to their strengths, weaknesses, and interests.
  • They are able to play, use their imaginations, and draw connections between the learning material and their lives.
  • They are able to use their strengths to compensate for weaknesses, find ways to work around their weaknesses, develop strategies to make a task easier, and find a niche where they can excel.
  • They are seen as competent and able to learn.
Why not develop programs for autistic people that start from these basic teaching principles?


Because good teaching is desperately needed. 

Some say that autism is only a different way of being, not a disability.  But that's not what I see when I read autistic people's writing.  Blogs such as We Are Like Your Child are full of struggles with speaking and executive function and daily living skills and sensory overstimulation and controlled movement and more.  There are so many strong, smart autistic people who have limited ability to speak in real time; who have to draw themselves a flowchart to leave a room; who have difficulty controlling their movements and emotions.  And they describe this as exhausting, embarassing, and painful.

All these people point out that their lives would be easier if their work, school, and social environments were arranged in a more supportive manner.  For example, a workplace that expects employees to network in loud bars is disabling for employees who have difficulty understanding speech in a noisy background, or get overwhelmed by a crowded environment.  But that's true for any disability.  A disability is simply a mismatch between a person's capabilities and their environment.  Unlike with autism, calling dyslexia a disability is uncontroversial; yet most of us know it would not be disabling in a society without writing.

That said, the higher one's skill at performing a task, any task, the easier life is--the less time and energy you have to spend struggling with it, and the more you can focus on other things.  And the more secure you are, even if you lack or lose support.  This is true both for skills that come easily to neurotypical people and skills that come naturally to autistic people--being better at a a skill just makes life easier.

From what I've seen, autistic people want to make the world more comfortable to live in, but they also want to learn the skills they need to live in the world.  (Does this come as a surprise?  Treatment or cure may not be compatible with acceptance, but education is.  Education is the common ground that autistic people and neurotypical parents can agree on.  There may be real differences in how we see autism, but we all want autistic people to have the skills to function in the world). 


AutisticChick writes that she wants:

"education tailored to Disabled. Those like me. Teaching Disabled to care for themselves as well as they can, we can, and be as self-sufficient as possible, while not being afraid to ask for help. Not being ashamed of being just as imperfect as you, in noticeably different ways. Teaching Disabled to interact successfully with Nondisabled without asking them, us, to sacrifice our identity...
We need to improve our Disabled Education systems. Not just our supports (cue Autistics). Those are important. But so is personal growth. Yes. I support teaching Autistics and Disabled to learn self-care skills. I support teaching life skills. The program I'm in right now teaches those things. I want to learn them.

I've been told I shouldn't. I've been told I can't. I've been told I don't need to.

Our systems are not perfect. They need improvement. That's why I speak out. That's why I write."
Sparrow Rose Jones, in unpacking whether she would want a cure, says "there are aspects of my being that I like which may be the result of autism."  But, she says:
"I would like to not have dyspraxia — I don’t want the clumsiness, I don’t want the dysgraphia, I don’t want the difficulty in controlling my internal ‘thermostat,’ I don’t want the topographical agnosia.

I would like to not have prosopagnosia — face-blindness. It would be so nice to always be certain who I am speaking with. Recognizing people would be a real gift.

I would like to be able to follow and participate in a group discussion. I would like to be able to interact with people without regularly, unwittingly pissing them off. I would like to not live with constant stress and anxiety. I would like to be able to read the body language of others; I would like to have better control of my own body language. I would like to have a higher stress threshhold and a body that doesn’t respond to stress by turning off abilities: speech, vision, movement, hearing. I would like to not have meltdowns and shutdowns. I would like it if human contact – touch, smell, eye-gaze – were not so painfully difficult for me to endure.
I would like to be able to secure and maintain employment.

If this is a cure for autism, I want it."
In short, she wants not some generalized "cure," but to learn these specific skills.

For some of these skills, people have already developed ways to teach them--for example, occupational therapy targets clumsiness and dyspraxia; and the best social skills coaching is designed to teach how to interact with others without inadvertently "pissing them off."  Other impaired skills such as face recognition, which are affected by neurological problems, we have not yet found a way to teach.  Here, research could help in understanding why these problems exist, how the impaired skills could be learned, or if they can't, how a person can compensate.  We should be spending more research funding on this rather than on finding genetic causes.

As it is, schools and autism-specific programs are not effectively teaching autistic people the skills they need to be as self-sufficient as possible and achieve their life goals.  Meanwhile, our education programs often tell them (directly or indirectly) that they are worth less than others, that they are broken, and that the way they naturally think and feel and move is wrong.  If educational experiences come with this sort of dehumanization, are we not inadvertently teaching autistic people to avoid opportunities to learn new skills as too painful, and to expect adjustment only from others?

Indeed, the best resources for learning skills right now come from autistic people themselves.  Books like Living Independently on the Autism Spectrum by Lynne Soraya and Life and Love by Zosia Zaks.  Blogs like Real Social Skills and the Autistic Adult App Project.  Specific blog posts like Autistifying My Habitat.  Groups like TOTKO.  None of these people are teachers or service providers; they are simply ordinary people volunteering their hard-won knowledge.  All these findings come from personal experience, and given the variation on the spectrum, will help some people more than others.  In the absence of controlled, large-population research, it's not clear yet what advice will be useful to whom.  But researchers have yet to test their ideas and find out.

Because of the "treatment" paradigm that dominates the intervention world, these resources are outside of the education and intervention establishment.  We would consider it ridiculous for cancer patients to collaborate with doctors on designing their treatment plan.  Because we view autism from a similar mindset, we ignore the insights autistic people have and miss the opportunity to work with them to design and implement services and educational programs.

Autistic people can meaningfully shape autism "treatment" where cancer patients cannot meaningfully contribute to their treatment because what autism is, and how autistic people can function better in the world, are not brute biological/scientific facts that stay the same no matter what viewpoint you look at them from.  A tumor is a tumor no matter who is looking at it and what their viewpoint might be.  The same is not true of autism.  Aspirin reduces pain no matter what your philosophical beliefs about the nature or purpose of pain.  The same is not true of a social skills intervention.  Thus, a medical paradigm for autism intervention doesn't work.  But an educational one could. 

What insight could autistic people bring to education?  They know they live in a world where the majority of people think, feel, perceive, and act differently than they do.  They understand that autistic people are constantly forced to adapt, and typically developing people misunderstand autistic people at least as much as the reverse. They could design programs that teach autistic people to seek out people and environments that fit them well, change what aspects of their environments they can, and adapt to what they cannot change.  We might see autistic-designed intervention programs, perhaps along the lines Alyssa envisions.  An education paradigm would make all this possible. 

As Alyssa puts it, the difference between education and treatment is the difference "between learning to work with your brain as opposed to working to defeat your brain and pretend it is not wired the way it is."  The first one works.  The second one doesn't.
 
So let's stop combating, and start teaching.  As Ibby Grace says, "intensive education is realer than cure."

---
*Autistic children and adults are more likely than average to take medication.  However, the drugs do not treat autism itself but common co-occurring conditions, such as depression, anxiety, aggression, or ADHD.