7/01/2014

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

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

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

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

Respect

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


Interpretation

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


Accessibility

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



Others

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

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

5/22/2014

An Open Letter to Jeffrey Howe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.
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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