Wednesday, November 30, 2011

Person-First Language: Why It Matters (The Significance of Semantics)

Lydia Brown
autistichoya.blogspot.com

At the Adult Services Subcommittee's final meeting in late July, much to do was made about semantic disagreements -- "ASD individual" versus "individual with ASD," and of course, the dreaded "person with autism" or "person who has autism" versus "autistic person." These issues of semantics are hot button issues, and rightfully so.

Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase -- even if it holds the same literal meaning -- alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.

In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity -- the same way one refers to "Muslims," "African-Americans," "Lesbian/Gay/Bisexual/Transgender/Queer," "Chinese," "gifted," "athletic," or "Jewish." On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as "person with autism," "people with autism," or "individual with ASD" because they do not consider autism to be part of an individual's identity and do not want their children to be identified or referred to as "Autistic." They want "person-first language," that puts "person" before any identifier such as "autism," in order to emphasize the humanity of their children.

Yet, while I have been familiar with this rift among the autism community over the use of "person with autism" as opposed to "Autistic person," I hadn't fully explored the diversity of perspectives on the topic until now.

During last Wednesday's meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing "ASD individual" in our report to "individual with ASD." The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. "I disagree," she said as the suggestion was read aloud. "I'm not a person with autism; I am Autistic."

Immediately, 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."

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language -- from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that's a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by his or her name. I can't think of any teacher -- at least any decent one -- who would refer to a student as "that Autistic kid," or "that kid with autism." And I certainly can't think of any parent who wouldn't refer to his or her child by name.

But why are we self-advocates so opposed to this terminology? Aren't we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don't. Because when people say "person with autism," it does have an attitudinal nuance. 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.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as "people with cancer" or "people who have cancer," as opposed to "cancerous people," the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person's identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

What I found most interesting in reading this selection of articles and blog posts is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using "person with autism" that the authors strongly oppose language referring to disabilities like "suffers from," (i.e. "Alan suffers from Asperger's syndrome;" "Joey, an autism sufferer;" etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology "person with autism" would disagree with language like "suffers from," but it is still interesting that there are those who do. It suggests a fundamental shared value -- that people with different neurological conditions are not "suffering" because of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying "person" before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, "person with autism" is "persona con autismo," while "Autistic person" becomes "persona autística." In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person's identity as an Autistic person as opposed to shunting an essential part of the person's identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people -- and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That's why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us -- in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as "a silly semantics argument" denies the power of language.

What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use "person with autism," I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use "Autistic person," I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual's voice and feelings as equally important. Otherwise, we'll become even more dysfunctional than my subcommittee has been in recent months.

----

Interested in other perspectives? Here are some links to feed your curiosity.

(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. [Emphasis added -Eds])


People who use "autistic" or "autistic person":
People who use "person with autism" or "person who has autism":
People who use both interchangeably:
----

A version of this essay was previously published at autistichoya.blogspot.com

Friday, November 25, 2011

The Attitude of Gratitude: A TPGA Xoom Giveaway

UPDATE 11/27: Our Random.org-selected winner is Courtney W.! Congratulations, Courtney.

Thank you to everyone who participated, and we encourage you to read the more than 100 wonderful comments left below. -SR

----

The good folks at Motorola sent me (Shannon) a Xoom tablet to give away. No hidden agenda, no stipulations -- they had simply heard how tablet computers can help people with autism, and they wanted to get two of their devices to people in the autism communities -- one to my son Leo, and one to a blog reader. A blog reader who could be you!

We TPGA editors had already planned to kick off the holiday season by seeding some positivity: putting up a gratitude post, and asking you readers to leave a comment about something that makes you feel happy or grateful -- and we still hope you will. But now, if you like, you can also make that comment an entry for our giveaway.

Our entire family has been playing around with our gifted Xoom, and we like it. It works well for Leo for many of the same reasons as his iPad -- size, intuitive touchscreen interface, and lots of apps, music, video, and other options. We also appreciate its Flash capabilities that allow Leo to view embedded YouTube videos, etc. And as you can see, it is easy to operate while holding not one but two stim objects.

Our boy was also delighted to see favorite apps like the Dr. Seuss OmBooks, I'm intrigued by the variety of apps available -- Android Market does not require developers to ask for formal approval before publishing. Here are two Android apps resources for Autism/AAC that I'm going to be perusing, and I'll keep looking for others (suggestions welcome):
If you'd like a chance to win your own Xoom, leave a comment on this page telling everyone about something that brings joy into your life, or fills you with gratitude. Good luck!

Participants must abide by our Giveaway rules. Additional stipulations:
  • Your shipping address must be in the U.S., Canada, or Mexico.
  • Only one comment per person will be counted, though you can certainly leave as many gratitude comments as you wish!
  • Only comments on this website page will be counted -- not those from Facebook or Twitter.
  • The eligibility period will be over at 11:59 PM Pacific Time on Saturday,  November 26, 2011. Comments left after that time will not be counted.
  • Only one winner will be selected, and will be announced on this site on Sunday, November 27th.

Wednesday, November 23, 2011

On "Quiet Hands"

Julia Bascom
juststimming.wordpress.com

Explaining my reaction to this:



means I need to explain my history with this:

quiet hands

quiet hands

1.

When I was a little girl, they held my hands down in tacky glue while I cried.

2.

I’m a lot bigger than them now. Walking down a hall to a meeting, my hand flies out to feel the texture on the wall as I pass by.

“Quiet hands,” I whisper.

My hand falls to my side.

3.

When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed.

4.

In a classroom of language-impaired kids, the most common phrase is a metaphor.

“Quiet hands!”

A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It’s silent, until:

“Quiet hands!”

I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.

The literal meaning of the words is irrelevant when you’re being abused.

5.

When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.

6.

Hands are by definition quiet, they can’t talk, and neither can half of these students...

(Behavior is communication.)

(Not being able to talk is not the same as not having anything to say.)

Things, slowly, start to make a lot more sense.

7.

Roger needs a modified chair to help him sit. It came to the classroom fully equipped with straps to tie his hands down.
We threw the straps away. His old school district used them.

He was seven.

8.

Terra can read my flapping better than my face. “You’ve got one for everything,” she says, and I wish everyone could look at my hands and see I need you to slow down or this is the best thing ever or can I please touch or I am so hungry I think my brain is trying to eat itself.
But if they see my hands, I’m not safe.

“They watch your hands,” my sister says, “and you might as well be flipping them off when all you’re saying is this menu feels nice.”

9.

When we were in high school, my occasional, accidental flap gave my other autistic friend panic attacks.

10.

I’ve been told I have a manual fixation. My hands are one of the few places on my body that I usually recognize as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.

My hands know things the rest of me doesn’t. They type words, sentences, stories, worlds that I didn’t know I thought. They remember passwords and sequences I don’t even remember needing. They tell me what I think, what I know, what I remember. They don’t even always need a keyboard for that.

My hands are an automatic feedback loop, touching and feeling simultaneously. I think I understand the whole world when I rub my fingertips together.

When I’m brought to a new place, my fingers tap out the walls and tables and chairs and counters. They skim over the paper and make me laugh, they press against each other and remind me that I am real, they drum and produce sound to remind me of cause-and-effect. My fingers map out a world and then they make it real.

My hands are more me than I am.

11.

But I’m to have quiet hands.

12.

I know. I know.

Someone who doesn’t talk doesn’t need to be listened to.

I know.

Behavior isn’t communication. It’s something to be controlled.

I know.

Flapping your hands doesn’t do anything for you, so it does nothing for me.

I know.

I can control it.

I know.
If I could just suppress it, you wouldn’t have to do this.

I know.

They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”

I know.

I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.

I know.

I need to have quiet hands.

I know. I know.

13.

There’s a boy in the supermarket, rocking back on his heels and flapping excitedly at a display. His mom hisses “quiet hands!” and looks around, embarrassed.

I catch his eye, and I can’t do it for myself, but my hands flutter at my sides when he’s looking.

(Flapping is the new terrorist-fist-bump.)

14.

Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you...

if you...

if you...


15.

Then I...

I...

.

Monday, November 21, 2011

Excuse Me --That's My Son You're Talking About

Chris R.
autismspoke.blogspot.com

I can see it very clearly. I'm pushing a shopping cart through a store. In the cart rides Matthew, my four year old son with autism. He's making the sounds he makes...

Sometimes when he's happy, the sounds he makes are loud. You might say they are screams, but happy screams. When he is happy and loud, we do what we can to keep him somewhere below an F-16 on full afterburner. It's not that I'm worried he'll ruin ten seconds of someone's shopping trip ... it's that I worry what I'll do if someone says anything cross, or gives me a look that can't be taken in any other way.

You see, I'm always in full-blown autism dad alert mode ... just waiting for some parent with "perfect" kids to trip on the wire and have the autism awareness grenade that is me explode and rip them into tiny, self-righteous bits right in the middle of Target.

Which brings me to our trip to the grocery store that evening.

Same scenario as before. Matthew is in the cart. I'm pushing. My wife and daughter have the list and are leading the way.

Matthew lets out a couple of loud happy sounds -- approaching F-16 volume -- as we peruse the outer regions of the produce section. No biggie. There are a lot of people there and everyone is focused on getting in and getting out.

I decide we need bananas. The banana area is crowded, so I leave the cart -- and Matthew -- with my wife and head in.

Just as I reached the bananas, I heard Matthew's happy squeal again.

And wouldn't you know it ... someone tripped on the wire.

I heard: "Christ there goes that kid, screaming again."

This comment was made by a fortyish male grocery store worker, to his coworker, who stood about ten feet away (so it was said loud enough for everyone around him to hear).

I was behind him, so I saw his coworker roll his eyes and nod his head in agreement.

I calmly bagged my bananas and turned to face the guy.

"Excuse me ... the little boy you're complaining about? That's my son. He has autism. He's four and doesn't speak. He gets excited and screams sometimes. He's not throwing a fit ... it's just what he does."

He had the look of someone who just got caught talking small smack about someone else's kid.

He threw in a few "I'm sorry"s and a "He's not as loud as some of the kids in here" as I spoke.

I ended up giving a very nutshell explanation of autism to the guy.

I wasn't angry with him. He was quick to apologize and listened to what I had to say. I patted him on the shoulder as I walked away and said "I hear it all the time." Looking back, I hope he took that as, "I hear my son's happy squeals all the time" and not "I hear people complain about my son all the time." I may clarify if I ever see him again.

I might have been that guy in my former life. Hell, I know I've been that guy. Maybe I wasn't so open with my complaints, but I'd get annoyed when I saw or heard a kid going bonkers in public.

Not anymore. I give the courtesy to others, and I sometimes foolishly expect to receive it.

This was a minor thing, and I reacted accordingly I believe.

So that's that. The trip wire isn't as sensitive as I thought it was...

But it will always be there, waiting for the next person to step on it. How hard they step determines how hard the grenade explodes.

a version of this post was previously published at autismspoke.blogspot.com

Friday, November 18, 2011

Early Ignorance

Karen Velez
solodialogue.wordpress.com

My son was diagnosed with autism in April of 2010.  He was almost four years old when we received this news.  It was not the shocking blow that I’ve heard other parents describe.  For me, that blow came at Christmas 2009.

To me, my son was always a “sensitive” child.  I never baby sat and, literally, had no experience with children.  I knew no one with autism.  I knew no one with children with autism.  I was, truly, the epitome of autism ignorance.

For the first three (nearly four) years of my son’s life, I had rearranged my own. Previously a trial lawyer working 45-60 hours a week, I cut back my hours to 9-12 hours a week. I thought this was “normal” for new mothers.

My son was obsessed with space. I bought every book on the planets. I ritualistically pointed to Mercury, Venus, Earth…. at my son’s urging so he could recite them. I cringed when newer books left out Pluto because it was part of our “routine.” That was how we “played.”

Around my son, I learned not to say certain words or sounds to avoid a very nasty reaction. This was okay with me: I reasoned that at least he was communicating his dislikes. Some of the things my son rejected: hearing me make the sounds of animals, horns, or sirens; counting numbers also set him off.  Pretend play was non-existent. My son had other quirks: he required me to keep both lights in our bedroom, either “on” together or “off” together. We took  escalators up and down and up and down. We rode elevators four to six times in a row, while I apologized to those who got in my son’s way when he insisted on pushing the buttons. All the while, I never thought these behaviors were indicative of something. Something big, something important.

My son spoke, but not in sentences. He repeated lines from TV. I counted how many words were in his vocabulary, as requested by my pediatrician. It was within the low end range. I introduced new words. I fudged the numbers to fall within “normal.” I was fooling myself. Clueless.

About two weeks before Christmas 2009, my son had an ear infection. We went to the doctor. Oftentimes, our regular pediatrician would not be available. We saw many different doctors. It was never pleasant. There were always tears and loud crying. But this was not Disneyland. This was the doctor’s office. That was normal?

On this occasion, my son was particularly fussy. As usual, I intervened. “Oh, Dr. B, please don’t use the word ‘moo,’ or he will get upset,” I said, while she tried to scope his ear.  Too late. He was upset. He started to spell.

One of the paths to a “meltdown” for us was always to spell. “T-R-U-C-K!!” His inflection and volume would rise. He was spelling by the time he was two. Now, here in Dr. B’s office,  spelling escalated to crying, screaming, and a full-fledged meltdown.

That’s when Dr. B sat me down and suggested an evaluation. She did it as gently and kindly as she could. She told me that UC Davis Mind Institute, nearby, was one of the best facilities in the country. She would make a recommendation. She kept using the words “quirky behavior.” She tried to soothe me. She told me that his autism was “mild” and “borderline.” She told me about other children with autism and how they were in “regular schools.”

But by this time, my head was reeling.  I was panicked.  I only half heard her words. Something was “wrong” with my precious, beautiful baby boy?  My joy, my life. How dare she suggest my son might not attend “regular” school?!  And, profoundly, to the forefront, the question, what is autism?

At the time, I had heard that children could “get autism” from vaccinations.  I heard that Jenny McCarthy had “cured” her son of autism by some diet.  I knew nothing.   I had absorbed only bits of myths.  I was mad!  At Dr. B, at my husband for not being there when I was given this news, mad at the world.  The reality was I was mad at my ignorance.

After Christmas, I filled out paperwork for an evaluation with UC Davis. I mailed it in. Every day, I was researching, looking for treatments and answers. I found private speech therapy for autistic children nearby. I obtained referrals. First, a hearing evaluation. Then speech therapy.

Looking back now, if I’d only understood what autism was from the very beginning, maybe I could have started intervention earlier. I wish I had not been so profoundly ignorant. I wish I had known more. I still have so much to learn, to accept, and to understand.

Now, my son has therapy five days a week. He has made significant progress. Meltdowns are few and far between and almost (knock on wood) a distant memory. He is phenomenally smart but we have our daily struggles. I am grateful that I was blessed with all the right pieces falling into place.

A lot of parents who blog and tweet make a point of telling the world that autism does not have their child -- their child has autism. It’s almost as if, in using the word autism, in defining our children, we envelope them with a blanket of fog to others. Instead of recognizing our children as individuals, our kids are cast into a stereotypical bin and avoided by those too ignorant to understand.

The word “autism,” in my limited experience, remains a mystery to the general public.  Unless your life has been affected, you simply don’t know. There is nothing to motivate a person to know.

That’s where each of us who do know come in. Each of our voices is a weapon against ignorance. As parents, with each blog, each story, we announce to the world that our children are diverse, varied, multifaceted, individuals with interests, talents, and personalities just like any person.

I want everyone to know, to understand, to recognize.  Because, ironically, it is the power of communication -- the very power that so many naive about autism assume autistics don’t have -- that can, and will, save autistics in the end. Save them from prejudice, bullying, discrimination and isolation. Knowledge is power and communication is the key.

A version of this essay was previously published at www.solodialogue.wordpress.com/

Wednesday, November 16, 2011

Finding Not Even WrongLand

Jean Winegardner
www.stimeyland.com

Photo courtesy of the author
I am always apprehensive about parent-teacher conferences.

Nothing bad ever happens. Sam has never gotten anything but glowing reviews. Quinn is Quinn, which is wonderful and charming. And Jack? Well, I always hear that he is very smart, that he is "making sufficient progress to meet goal(s)." In fact, I never really hear anything that surprises me, but I still feel angst walking in to those meetings -- at least to Jack's.

Today was different. I've noticed Jack struggling more and more this year. I've started to wonder if an inclusion classroom is the best setting for him. (That's a whole other set of angsty feelings.) I've started to see his autism-specific deficits bumping up against the curriculum.

But here's the thing. Jack's teacher sees this, recognizes it for what it is, and gave him the appropriate marks to reflect it. She gets it. She very explicitly knows that giving him high marks just because he is smart doesn't help him. She doesn't just want to teach him. She wants to help him.

Third grade is where it starts getting harder for him to slide by just because he's bright, she told me. I agree. As someone who was smart enough to be an epic bullshitter and get good grades all through school without actually learning anything, I appreciate her seeing that and stating it. (I personally think that I started actually hearing and retaining knowledge for the first time in grad school. Seriously. But I could write an essay like nobody's business. Kinda like now, actually.)

Here's where she blew my mind though: She showed me some examples of his work and took the time to go through his answers and tell me how she and he got to them. She showed me one worksheet about seeds and said, "I didn't know how to grade this. It's not even wrong, but it's not right."

Those of you who have read Paul Collins' excellent book about autism, Not Even Wrong, might have just taken the same sharp intake of breath that I did when she said that in the conference. (If you haven't read it, check out my review of the book from last year at Autism Unexpected. Then go read the book.)

That phrase refers to what was originally a derogatory way of dismissing someone's answer to a problem. It's not right, it's not wrong, but the solver's frame of reference is so far off base that it is not even wrong. It perfectly describes autism and it perfectly describes Jack.

It also perfectly encapsulates what I want for my kid -- a place, an existence, where it is okay for him to be not even wrong. Because I love the way Jack's brain works. I love the way autism has given him this unique perspective that lets him come up with some of the most amazing things. I adore his not even wrongness. I want him to find a way of life where starting from a fundamentally different point of view is an asset to him and where he can be valued for that.

I walked out of the conference feeling buoyed. I'm not sure by what. Was it hope? I don't think so. I know we have a lot of hard work ahead of us to find Not Even WrongLand. Was it delight that he has a teacher who gets him? Partly, but we've had that before too. Jack has always had amazing teachers. Was it a sense that this teacher wants to help Jack get to where he needs to be? Definitely, but that's not totally it.

I think what I felt was a shift in thinking today. Largely mine. Ever since the Dialogues over at Thinking Person Guide's to Autism, I have been feeling that shift. I've always been a neurodiversity advocate, but sometimes I run across something that kicks that into high gear. Hearing Jonathan Mooney speak for the first time was one of those. The Dialogues was another. Hearing those words come out of Jack's teacher's mouth (quite by happenstance; she wasn't, as far as I know, aware of the implications of the phrase) is the latest.

Let me offer you this quote from Collins' book: "Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg."

This is where I see my place in the autism community. I'm not running for office. I'm not pushing legislation. I don't fundraise for causes. I'm not forming organizations and I'm not fighting legal battles. All those things are necessary and important, but that's not what *I* do. I talk. I talk and I write and I try to win people over with honey and words.

I'm trying to help find more square holes and I am trying to get to the round holes and make them at least trapezoidal before my kids and your kids get hammered into them. I want to spread awareness of both autistic kids and autistic adults. I want this to be a world where it is okay to be a square peg without having to pretend to be round.

I don't want to change Jack. I want to change the world.

A few weeks ago, I started trying to change the world by changing Jack's class. I went in, armed with nine pages of notes, borrowed liberally from MOM-NOS' toasters and hair dryers series, and I told Jack's classmates about autism.

I told them how each one of them is different and how they can be a friend to Jack and other kids with autism. I told them to go forth and be different themselves, and to show other kids that is okay to be different and that even if he doesn't always show it, that they are important to Jack and they can make a difference. I listened to them at the end of my talk when they told me, "There is a kid on my soccer team with autism," and "I have an uncle who doesn't talk," and I knew that some of them were getting it.

Not all of those kids are going to make it. They will not all stand up for the different kids and adults that they run across in their lives. But some of them will. And some of them, even if they don't act on it now, just might remember about the toasters and the hair dryers later in life when they come across someone who acts differently. And they might help that square peg find a hole that isn't round.

The kids sent me letters the day after my presentation, letters that said things like "Thank you so much for coming and teaching us how to be friends with Jack and telling us what games Jack likes to play. I already started to try to be friends with him."

Today, at my conference, Jack's teacher told me the story of a short passage that Jack had to write, which would get a grade of 0 to 3 points. His original sentence garnered him a zero. So the teacher pushed him, and Jack changed it, reading it to the whole class. The change gave him a one. Then he added to it some more and read it to the whole class, and then he got a two. Pushed by his own outrage at the injustice of the Not Three score and the urgings of the teacher, Jack continued, finally reading his final three-worthy passage to the whole class.

I wasn't there, so I don't know how it really all went down, but this teacher has created an environment where Jack was comfortable going through this whole process in front of his peers. And the class understood. They knew where he was coming from and how hard he was working.

The teacher has a Hall of Fame wall where passages that are really, really good and earn threes get hung up. Jack's passage was undoubtedly not up to what was already posted there. But you know what Jack did? He went and got some tape and he put his paper, on which he'd crossed out "0" and written "3," up there all by himself. He knew that he had worked hard and that, for him, his work was Hall of Fame worthy. And the teacher made a square hole for him and let it stay.

The world is slow to change. We have been hammering square pegs into round holes for so long that it takes a huge leap to put down the hammers. I'm hopeful that I got to some of those kids before they even pick up the hammers. And I hope that some of those kids told their parents. And I hope that some of you read this and tell your kids. And I hope that we, all of us together, CAN change the world.

I guess what I felt today at Jack's conference is that his teacher is finding a way for him to be a square peg and to make it okay. She is in no way an expert on teaching autistic kids. I don't know if she knows much about autism at all. But she seems to intuitively get the need for square holes, and that? That is everything I can hope for.

Monday, November 14, 2011

Interview: Christa Dahlstrom of Flummox and Friends

Flummox and Friends creator Christa Dahlstrom recently sent out the following tweet:
"People of Twitter: I am engaged in the making of a TELEVISION PROGRAMME for NERD YOUTH and I REQUIRE YOUR ASSISTANCE."
We recommend you heed her rallying cry and hop over to the Flummox and Friends Kickstarter page -- Christa and her crew are poised to deliver a smart, sassy, infinitely engaging and very necessary show for kids who are, well, flummoxed by social dynamics. We talked to Christa last week about  why Flummox and Friends needs to happen and how it will change the world when it does.

Tell us what Flummox and Friends will be like.

The show is a live-action comedy, along the lines of a contemporary television comedy rather than an instructional video or typical kids' educational show.

The main focus of the show is Professor Gideon T. Flummox of Flummox Labs and his two lab assistants, Milo and Wanda. The three of them are quirky in different ways that viewers will both recognize and hopefully identify with. The trio work together inventing all sorts of devices and contraptions. Some of these inventions are designed to help them overcome the social challenges they encounter when interacting with their friends -- like Suzie Swizzler, a bubbly and talkative chef, and Dex Brickerson, a suave and charming pilot. When the inventions fall short (or comically malfunction) they come up with new ways that they -- and the viewers -- can deal with the challenge.

The characters on Flummox and Friends don't change who they are, or lose their quirkiness, when they learn a new way of coping with a social challenge. We want to try to show the world through their eyes -- that these situations are weird and hard -- and not make them into characters who need to be fixed or changed.

In between the Flummox Labs scenes, there will be short musical and animated segments designed to support the theme of the episode.

We think of it as a little bit Pee Wee's Playhouse, mixed with The Big Bang Theory, with a little old-school Electric Company thrown in.


What inspired you to create the show?

For me, so much of this was inspired by my experience as a parent. My son, who has Asperger's, gravitates towards humor and story as a way of expressing himself, connecting to others and learning. Any time he's engaged in something that makes him laugh, he's more open and more available to take in information. While people on the spectrum might not have the social wiring that comes built-in in a neurotypical brain, they often are incredibly sophisticated when it comes to humor and language and aesthetics.

Unfortunately, many of the products designed to teach social skills seem to ignore how sophisticated and smart our kids are. So for example, you've got a kid who enjoys the rapid fire dialogue of, say Phineas and Ferb, or can point out the differences between the original Star Wars and the 2011 reissue, and you give that kid a worksheet that says, "When I see my friend I say 'Hello. How are you?'" well, it's going to fall kind of flat. And I would even say that it's not very respectful of the kid's intellect.

So, I found myself wishing that someone would embed ideas about social and emotional skills into the types of programs my son and other kids like him really enjoyed watching: the ones of that are fast-paced and captivate and challenge his intellect and sense of humor. And eventually, sort of to my surprise frankly, I found myself developing it and writing it myself.

Who is your target audience?

We see the show appealing to a couple different groups.

One is families who have bright and verbal kids that are struggling with social interaction. These kids will have either been diagnosed with a specific condition, or might be those kids -- and we think there are a lot of these -- who are struggling but don't have a formal diagnosis. These are the kids that we think are really falling through the cracks because without that diagnosis, they usually don't have the pathways to support that are available to those formally diagnosed.

Another is educators and therapists. We think that teachers and therapists who are already teaching social skills will want to integrate episodes or portions of episodes into their existing curriculum. But we also hope that general educators will embrace the show, since we think that many teachers in regular ed classrooms see the need for something that helps them work on social and emotional development with all kids.

One note: this isn't specifically a show "about" autism. It's a show about friendship, and relationships and how relating to people is hard work, especially when friends have very different styles that can sometimes create misunderstanding and annoyance. And it's about how those relationships -- even through they're hard work -- are totally worth it, totally worth learning a few strategies for coping with the troubles. And in that way, we're hoping that Flummox and Friends will appeal to people both inside and outside the special needs community.

Will it appeal to parents as well as to kids, like Bugs Bunny or Pee Wee's Playhouse? 

It's critically important to us that families want to watch this together and that adults enjoy the show, not just tolerate it. We see one of the main goals of Flummox and Friends is to function as a springboard for conversations about social and emotional challenges -- conversations that don't feel punitive or judgmental, but that emphasize how normal it is to feel "flummoxed" by our weird and arbitrary-feeling system of unspoken rules. We think adults will relate to the characters and their dilemmas as they think about situations with friends or in the workplace.

How did you decide on the name "Flummox," and why?

"Flummox" captures the idea of being baffled by something that's inherently confusing -- rather than being "wrong" or not smart enough. Plus, it's super fun to say and has an "x" on the end!

Who helped create the show? Is it curriculum-based? Do you anticipate having parent/educator guides available?

I'm fortunate to be working with Jordan Sadler and Liesl Wenzke Hartmann, who are incredibly talented and insightful communication therapists. I first approached them when all I had was a detailed treatment of the show. I was hoping they could validate that it was a legitimate idea, that I was on the right track. I was thrilled when they loved the idea enough to want to work on it with me and make it a reality. They've developed the curriculum that will serve as the foundation for Flummox and Friends as an entire series. It's called Tune in, Connect, Have fun! which really beautifully sums up the steps of social development and the positive outcomes of social competence in a lovely way.

Jordan and Liesl based the curriculum on the most up-to-date research on developmentally-based approaches for looking at social skills, and they also drew on their own experiences as practitioners working with kids who have different kinds of social and emotional challenges. I think one of the things that really sets them apart is their play-based approach for working with children. They really believe that humor and joy and delight are foundational for learning to interact and form relationships and the show really reflects that point of view.

They're also working on a whole host of associated materials for educators and families that extend the content into the child's environment and support the learning goals.

When you reach your donation ceiling, what will the next steps be?

We'll go into pre-production mode, then shoot principal photography for a pilot episode. We've lined up a fantastic cast and most of our crew, but there's still a lot of work to do to get ready to shoot. Once we have a pilot episode completed, we'll try to get it seen by as many people as possible in hopes of finding a production partner who can help us turn this into a an entire series of episodes.

Is your goal broadcast or webcast TV -- and does it matter?

Right now, I'm not sure it matters so much. The ways that viewers consume television is changing and evolving so rapidly -- Netflix Instant is just a couple years old, YouTube just announced they're launching more than 100 channels with original content -- I'm really open to new possibilities for how to get our show out there beyond just trying to sell it to established players like PBS or Nickelodeon, which is kind of a long shot anyway. I think being open and opportunistic is in our favor now. Regardless of the distribution channel, we would want to be able to sell DVDs since that is still a big way families watch stuff and certainly important for the education market.

Of course, first we have to make an awesome pilot that people will love and want to watch! But, I think there's never been a better time to get an idea out to an audience directly without going to ask permission from the typical industry and institutional "gatekeepers." Rather than try to circulate a script or pitch an idea to someone else, we thought we'd be more successful by just going to the passionate community of parents and educators who we suspected were like us -- looking for a show like this.

Want to make Flummox and Friends a reality? Please visit the Kickstarter campaign before December 9th, donate whatever amount you can, then share the project links with everyone you've ever met!

Friday, November 11, 2011

Which Students Need Social Learning Groups?

Diane Levinthal
www.SocialStrides.com

Unless a child is diagnosed with a learning disability that is known to affect social interaction, issues can take parents by surprise. All of a sudden, we notice that the same children who played alongside peers in daycare are now alone at recess during the early elementary school years. They want friends and try to interact with peers but without success.

At this age children engage in cooperative play and interactions are based on peer choice, not just who happens to be in the class or in a playgroup mom selects. Now they must be able to read the subtleties of verbal and nonverbal language and tell the difference between literal and non-literal language across people (authority figures, peers, family, acquaintances, friends) and settings (school, community, home). We take this ability for granted, but it is an awesome leap in development. We expect them to absorb the nuances of social interaction just like the rest of their peer group. Why isn’t that happening for them?

In some instances, these are students with learning challenges in language, self-regulation or flexibility in thinking. In all instances, these are students who cannot learn to interact well simply through experience and exposure. It is not enough to let them join in with other children and hope that they will make friends. Because they are not able to read social cues well, they will not learn that way. Every day social settings are good places to practice newly acquired social thinking and related social skills, but they are not good places to learn them. Real world interactions move too quickly and are too complex for children with social differences. They also leave too much room for others to misunderstand them. For example, if a child is overly blunt he may hurt others’ feelings unintentionally and land into trouble at school. Or he may take friendly teasing literally and overreact in ways that prevent friendships from developing. These students need to be taught social thinking and skills in direct, concrete ways, and be allowed to practice those new skills while receiving feedback on how they are doing. They must use cognitive skills to learn what others learn automatically.

Some programs teach social skills that can be used in rote fashion in predictable situations. Examples include hand-raising in class, saying excuse me, or use of eye contact. But the social world is more complex than that. For example, eye contact is much more than simply looking into someone’s eyes. In addition to reading emotions, we track eye gaze to see what people are thinking about or what their intentions are and this helps us guide our own behavior. We use it to read the direction in which people are moving and this helps us to avoid collisions in hallways. We use it to note a listener’s eyes looking down and away from us, suggesting that they are not interested in our subject. We can also track eye gaze to determine whether teasing is friendly or not based on whom the teaser looks at immediately after delivering the joke.

Children with social difficulties require more than social skills instruction. They need to be taught to think socially. They need instruction that addresses social thinking, non-verbal language, inferring intentions and social problem solving so that they learn not only the “what, where, who, when and how” but most especially “the why” behind social interaction.

If you think your child is having trouble socially, get help. Social challenges do not go away on their own, and as our kids grow up, the social world gets more complicated and nuanced. In my experience, every individual wants to relate to others. With appropriate help, every student can make the social strides needed to develop friendships.

Wednesday, November 9, 2011

Stephen Shore: The TPGA Interview

Stephen Shore is noted for his tireless, globetrotting autism advocacy and education work. He is also such a busy and accomplished individual that he doesn't always mention roles like being a public member of the U.S. IACC (Interagency Autism Coordinating Committee). TPGA editor Shannon Rosa had the pleasure of talking with Stephen two weeks ago.

You do so many different things that people aren't always aware of everything you do. Can you tell us about yourself, in terms of your various pursuits?

I do a lot of teaching and researching at Adelphi University on issues related to the autism spectrum; specifically teaching courses on autism: an intro course, and a more second-level course called "Diagnosis and Intervention in Autism," in which we go deeper into different approaches and techniques. I also teach an intro to Special Education and a master's course in which students are expected to piece together everything they've learned.

My research and writing focuses on comparing different approaches to working with children on the autism spectrum, with the goal of matching practice to the needs of children, as opposed to proving which one is the best. And I don't find anyone else doing that.

An intuitive approach?

Yes. But I'd like to see if there's a way to make it more objective. We know that the best clinicians are doing that, they are matching approaches to needs -- and is that something that can be made part of an assessment, so we can adjust what approach a child might benefit from. There's huge diversity in the autism spectrum, almost too much diversity for its own good. If we can find a way to subtype in a meaningful way we'd be much better off.

And that's one of the problems of the upcoming DSM-V changes [to autism diagnostic criteria], that all the subtyping will be taken away. At this point, even as imperfect as [the DSM-IV criteria] is, an educator or clinician who is told they're going to have a new child with Asperger's in their class or on their caseload can start thinking of certain possible challenges that person might have, and what might be good to use as a technique or an intervention; whereas if someone is told they're getting a child with autism, that might tend to lead them towards other interventions. But now all that's gone. The good news is that it will force really looking at people as individuals.

As for the conferences, I do maybe 70 to 100 presentations per year -- I can do two to four presentations per conference. I do presentations and workshops and consulting about autism around the world, I've been to 27 countries so far, six continents and 45 states. Not Antarctica yet, but I do think there is a high incidence of autism amongst penguins -- they flap a lot, they walk in circles, they seem to have hyposensitivity to cold.

The third thing I do is writing about autism and issues related to autism, books, book chapters, articles, newsletters.

Then there's the fourth thing, which is giving music lessons to children on the autism spectrum.

That's a lot of doing! How do you get this all done?

I just do it. I sleep a lot on airplanes as I'm traveling from one place to another.

And you're married as well?

Yes. I've been married for 21 years.

I love hearing about all the things you do, as it proves so beautifully that there's no one way to live a happy, fulfilling life.

I have a good time doing all this stuff!

For those who like to play "Where in the World is Stephen Shore," where are you going next?

Well, next week I'll be out in Seattle, speaking at the US Autism & Asperger Association, the week after that I have conferences in Maryland, Virginia, and a couple in Philadelphia; the week after that is a big conference out in Columbus, and then another one out in Boston. As for international conferences, starting in December I have one in India, in February there'll be one in Bangkok and another one in India as well as in Dubai, and then in March there'll be another one in Bangkok.

You said that you really enjoyed these conferences because of the work that you do and also because of the sensory input from air travel -- specifically takeoffs and turbulence -- but is speaking work actually able to contribute to your income, or do you do it mostly as an advocate?

It's kind of both. It does contribute to my income to some extent, and on my own I wouldn't be able to afford to travel as much as I do; I suppose if I didn't feel so strongly about advocating I could find something else closer to home and make more money doing it. It's not a way to get rich, it's not even a way to earn a living -- but it can be helpful. And I talk to a number of younger people who are on the autism spectrum who kind of get enamored of the idea of traveling around doing presentations -- which is a perfectly fine thing to do, but is not a realistic thing to do as a career. I think it's important for them to know that.

I've heard from other folks on the spectrum who did start speaking at conferences that eventually their sensory needs weren't compatible.

Yes, sensory issues are difficult.

In terms of your advocacy work, is this something that was a natural evolution for you, or was there an event that made you think, "I need to get out there and do this work"?

I guess it's one of those deals where you get both. All the presentations I do, they just kind of grew. I don't advertise or market beyond just having a website that people find (www.autismasperger.net). Occasionally if there's something that's compelling or some place I want to go, I might walk up to the conference organizer and tell them that they should have me present at their conference, but that's about as far as it goes. I know that there are some people who are actively marketing, and it's perfectly fine to do that, but word of mouth seems to work best.

In terms of getting into advocacy, it seemed like there wasn't anything being done about it. It's a dirty job but John Wayne wasn't available, so I had to do it.

Can you tell us about situations in which you've had to really assert yourself, really self-advocate?

Yeah, I did do that in France one time. It was suggested that I contact the organizer of a parent group there about a presentation. She said she'd be happy to have me, but expected me to pay all the expenses. So I told her, "I won't do that." Then about six months later, my wife was haranguing me about going to Paris for a vacation. So I thought, "Well, OK, I'm going to be there anyways, so I'll let [the organizer] know I'm going to be there anyways, and I'll be glad to do a presentation." But then after I got there, the organizer said that I could take the subway. My response was that I wasn't going to do that, number one because of sensory issues; also not knowing French, I didn't want to get lost underground. And if it was impossible to provide transportation then perhaps we could do this another time. So, she did come out and get me. Sometimes you just have to advocate for yourself.

I also did it for another presentation, where they wanted two of us to arrive at the airport at the same time so we could take a car in together. My contact suggested a morning flight, and being a good boy I did get a morning flight. Then a couple of days beforehand she told me that the other person was arriving four or five hours after me, and that I'd have to wait at the airport. And given that that particular airport was BWI [Baltimore Washington International], I said that maybe another time would be better. So then they sent two cars.

When it comes to travel, sometimes if you don't self-advocate you can have a really miserable time. You have to advocate for what's appropriate. There are certain things that should be done for speakers at a conference. I don't ask for that much, but I don't want to have a weird itinerary where there's a huge layover or something like that.

I really enjoyed your presentation at the Morgan Autism Center conference. I appreciated the autism simulation you did in having the audience try to speak without using words that the letter N in them. I also really liked the demonstration you did at my house with TPGA editor Jennifer Byde Myers, about sensory overload. How did you come up with those ideas?

I got them from somewhere else! There's a lot of material out there. You can find some of it on the Internet and some of it in teachers' supplementary materials in books, and sometimes just seeing other people do stuff. The speaking without Ns comes from Richard Lavoie, he has a number of activities that artificially induce disabilities in participants. So I just took one of his activities and customized it to being related to autism.


The sensory one, I read about it online, in a resource for simulating various disabilities [example -Eds] -- so I grabbed onto that one.

I also enjoyed the wonderful Using the Airplane Bathroom video you showed at the Morgan Center conference. How did that collaboration happen, and what has the reception been?


Well, after doing some work with Dennis Debbaudt (who focuses on training first responders and police on encounters with autistic people), he and I came up with the idea that maybe we should do a video on safe travel. And that's what that video is an excerpt from. The full video's been done, it's now in production mode -- all we need to do is finish it up and it'll be available.

Are you the primary actor in the whole video?

Yes. It was a lot of fun. Now we just need to find the time to finish putting it together.

Monday, November 7, 2011

PPD-NOS and DSM5

Jon Brock
www.crackingtheenigma.blogspot.com/

Some cases of autism are obvious. Anyone who knew anything about autism would agree that the child or adult in question was autistic. Other cases are less clear cut. Indeed, the term "autism spectrum" implies the existence of a continuum that fades gradually into what we think of as the "normal" population.

Somewhere a line has to be drawn and where exactly we choose to draw that line defines what we mean by autism. It determines who is eligible to take part in autism-related research and this in turn influences the development of theories of autism. Eventually, this feeds back to our evolving definitions and cut-offs for autism. Most importantly when it comes to immediate real-world consequences, the diagnostic boundaries specify who is labeled "autistic" and, ultimately, who gains access to interventions and support.

In the absence of reliable biological markers or break points in the continuum, diagnoses are made by checklist. Tick enough boxes and you get a diagnosis of "autistic disorder" or "Asperger's disorder". Tick fewer boxes or the "wrong" combination of boxes and you're not considered autistic. You may, however, qualify for the mysterious diagnosis of PDD-NOS - "Pervasive Developmental Disorder -Not Otherwise Specified".

Defining PDD-NOS

"Pervasive Developmental Disorder" is an umbrella term covering five diagnoses:
  1. Autistic disorder
  2. Asperger's syndrome
  3. Rett syndrome
  4. Childhood disintegrative disorder
  5. PDD-NOS
    As the name suggests, PDD-NOS is generally thought of as a residual category for people who have a pervasive developmental disorder but don't quite fit into the other more specific categories. However, this all gets a bit circular because "pervasive developmental disorder" is defined only in terms of its constituent diagnoses. You've got a pervasive developmental disorder if you have any of the five diagnoses above (including PDD-NOS), and you've got PDD-NOS if you don't have the other four.

    In practice, PDD-NOS is defined along the same lines as autism but with less strict cut-offs. Current autism diagnostic criteria require evidence of difficulties in each of three "domains" - the famous autistic triad of:
    • social impairments
    • communication impairments
    • repetitive and stereotyped behaviours (RSBs for short).
      The 1994 version of the diagnostic rules allowed a PDD-NOS diagnosis to be given to anyone with significant impairment in any one of the three domains.

      However, the most recent revision, published in 2000, is much more restrictive. PDD-NOS is currently defined as:
      "a severe and persistent impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests and activities"
      In other words, there has to be evidence of impairment in exactly two domains and one of these has to be the social domain.

      Confused? You ought to be.

      PDD-NOS and DSM 5

      In 2013, the diagnostic rules are set to change yet again. One of the proposals for the new set of rules, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5), is to do away with the current distinction between autism, Asperger's, and PDD-NOS, replacing them with a single super-category of "Autism Spectrum Disorders". 
        While there has been heated debate about the abolition of the Asperger's diagnosis, there appears to be little opposition to the demise of PDD-NOS. It's not hard to see why. The term itself is unwieldy, suggesting diagnostic uncertainty. And there's no real sense of a PDD-NOS identity as there is for Asperger syndrome.

        An important question, however, is what will happen to people who would currently be diagnosed with PDD-NOS? In a study, published recently in the journal, Autism Research, William Mandy and colleagues at University College London set out to address precisely this question.

        Specifying PDD-NOS

        The study centred on the Developmental, Dimensional and Diagnostic Interview (known as the 3Di), a semi-structured interview, which provides scales for the three autism domains (social, communication, RSBs) as well as a number of other clinically relevant scales such as auditory sensitivity, motor impairment, and sleep difficulties.

        The 3Di was administered to parents of 256 children who had been referred for assessment. Based on the parents' responses, the researchers were able to identify 66 kids who met criteria for PDD-NOS according to the current rules. In other words, these kids were above the diagnostic threshold on the social scale and either the communication or the RSB scale. The remaining kids in their sample were above the threshold on all three scales and so were diagnosed with autistic disorder or Asperger'92s disorder (depending on their history of language development).

        The graph below shows the scores of the kids in the three diagnostic groups on each of the three main scales. Compared with children meeting criteria for autistic disorder or Asperger's disorder, the kids with PDD-NOS on average had lower scores (less impairment) on all three diagnostic scales. They also scored lower on the scales for auditory sensitivity, visuo-spatial impairment, and feeding difficulties (not shown in the graph).

        The PDD-NOS group (on the right) showed much lower levels of Repetitive Stereotyped Behaviours (Grey Bars) than kids with Autistic Disorder or Asperger's. Thanks to William Mandy for recreating the graph.

        As you can see in the far right column, group differences were particularly marked on the RSB scale. Indeed, the authors found that only two of the 66 PDD-NOS kids had clinically significant RSBs and both of these children were very close to also meeting the communication criterion, which would have given them a full autism diagnosis. The remaining 64 PDD-NOS kids fell well short of criteria for RSBs and achieved their PDD-NOS diagnosis by virtue of having both social and communication difficulties.

        The authors acknowledge that this isn't a huge sample and that kids weren't selected at random from the community so it might not give a totally accurate picture of the prevalence of the different diagnostic categories. However, their results suggest that what we currently term PDD-NOS should not be thought of as simply a milder form of autism. Nor is it, as the name suggests, merely a rag-bag miscellaneous category for kids whose difficulties can't quite be pinned down. Rather, the PDD-NOS label appears to broadly correspond to those individuals facing social and communication difficulties in the absence of the RSBs that characterize autism and Asperger's.

        Implications for DSM 5

        As Mandy et al. point out, their findings suggest a potential unforeseen consequence of the proposed changes to diagnostic criteria in DSM 5.

        To receive a diagnosis of "Autism Spectrum Disorder" (which is supposed to replace autism, Asperger's and PDD-NOS), an individual will have to show evidence of both:
        • social and communication impairment (these two domains will be merged)
        • repetitive and stereotyped behaviors (RSBs)
          Under these rules, 64 of the 66 children in the PDD-NOS group would not meet the criteria for Autism Spectrum Disorder. To the extent that Mandy et al.'s data are at all representative, this suggests that the overwhelming majority of people who currently meet criteria for PDD-NOS would not be considered autistic under DSM 5 and may not receive any form of diagnosis.

          There is certainly a case to be made that children are being over-diagnosed and that the boundaries for autism-related disorders should be brought in. However, as Mandy et al. point out, there is also a real danger that individuals with severe social and communication difficulties would be excluded from support and interventions designed to improve their social and communication skills. All because they don't also have RSBs.

          Social Communication Disorder

          In response to Mandy et al., Prof Francesca Happé, a member of the DSM-5 working group, had the following to say:
          "Recently, Mandy et al. raised concerns that many children currently receiving [a PDD-NOS] diagnosis will not meet proposed DSM-5 criteria for ASD because of a lack of restricted / repetitive behaviour. For these children, the proposed new neurodevelopmental diagnostic category of social communication disorder will be relevant. This diagnosis, it is hoped, will more clearly and accurately capture the pattern of impaired social and communication abilities seen in the largest subgroup now labeled PDD-NOS".
          On the DSM 5 website, the new disorder is defined more formally:
          "Social Communication Disorder (SCD) is an impairment of pragmatics and is diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability."
          Effectively, SCD seems to be official recognition for what researchers and practitioners have previously referred to as "Pragmatic Language Impairment" rather than a replacement for PDD-NOS. The emphasis is very much on the communication side of things, particularly conversation skills, with a suggestion that social difficulties are a secondary consequence of impaired communication. That's my interpretation at least.

          As Happé suggests, it seems likely that many people who currently find a place in the PDD-NOS "pigeon hole" would meet the SCD criteria. However, I'm not sure that the criteria necessarily capture the extent of the issues they face. As Will Mandy commented:
          "Our clinical experience is that children with PDD-NOS (i.e. mainly individuals with severe autistic social-communication difficulties, but without high levels of repetitive and stereotyped behaviours) are similar to those with a full autism diagnosis in terms of their functional impairment."

          What is autism?

          Although Mandy et al.'s study focused on PDD-NOS, it also raises some wider philosophical questions about what we actually mean by "autism" or "autism spectrum disorders". In particular, how do we determine what counts as a defining feature of autism?

          Up until the early 1970s, language impairment was seen as one of the major defining features of autism. Indeed, researchers such as Michael Rutter argued that autism was essentially a severe form of language impairment. This theory was abandoned, however, when it became clear that there were some individuals who had the social impairments associated with autism, despite having very good language skills. Gradually, the diagnostic criteria were relaxed and today language impairment is no longer considered a necessary criterion.

          Mandy et al.'s study seems to present an analogous situation with respect to repetitive and stereotyped behaviours (RSBs). As with language impairment, RSBs have long been considered a defining feature of autism. And, as with language impairment, it now appears to be the case that a substantial group of individuals exhibit social impairments without exhibiting RSBs. This begs the question of why RSBs should continue to be considered a defining characteristic of autism when language impairment is not.

          Thinking outside the diagnostic box

          In essence, autism is whatever we say it is. Although we might like to think of it as a natural kind - an objectively discrete entity that falls out of nature, we are, as Prof Happé delicately put it, trying to "carve meatloaf at the joints". DSM 5 isn't going to change that, even if it changes where those cuts are placed.

          Given our current state of ignorance, there is little practical alternative to this approach to diagnosis at this time. But it's still important to constantly remind ourselves that the lines between autism and not-autism are, to a certain extent, arbitrary. Indeed, researchers like myself will have to learn to think outside the prevailing diagnostic boxes if we ever hope to understand autism's place in the human spectrum.


          References:

          Happé F (2011). Criteria, Categories, and Continua: Autism and Related Disorders in DSM-5. Journal of the American Academy of Child and Adolescent Psychiatry, 50, 540-542.

          Mandy W, Charman T, Gilmour J, & Skuse D (2011). Toward specifying pervasive developmental disorder-not otherwise specified. Autism Research, 4, 121-131.}

          Friday, November 4, 2011

          Autism Spectrum Disorders and Physical Therapy: The Motor Connection

          Dr. Joni Redlich, DPT
          www.kidpt.com

          Movement is an integral part of our social, emotional, and physical lives. A 4-month old excitedly kicks her arms and legs in response to the funny face dad makes, so he does it again. An 8-month old will crawl to retrieve her favorite rattle, shake it to hear the sound it makes, and then look at mom to share the experience with her. An 18 month-old takes moms hand, walks her to the kitchen, and says “juice” while pointing to the refrigerator. As a child grows, the length and complexity of movement sequences become more sophisticated.

          Children with autism spectrum disorder (ASD) often cannot coordinate the myriad of movements needed to complete these interactions. Although children with ASD are often not diagnosed until they are far out of infancy, studies of home videos of children later diagnosed with ASD showed motor differences that had been undetected as infants (Teitlebaum 1998, Teitlebaum 2004).

          Motor differences are often due to motor planning challenges, sensory processing differences, atypical reflex development and underlying decreased tone. Motor planning challenges make it difficult for a child to time, sequence, and execute a movement, such as reaching for an object, crawling towards mom, or activating a toy. Sensory processing differences often cause children with ASD to take in misinformation from the environment. The child may be over or under sensitive to smell, sight, sound, touch, or movement. Low tone, or decreased stiffness of the muscles, requires the child to use more energy to move, can delay motor development, and further alters the sensory feedback a child receives during movement. The child with ASD will learn to roll, crawl, and walk, but the quality of their movements may be poor. As the child gets older, they may struggle to function at more sophisticated levels when they have not mastered these core skills. As a result of differences during development, children with ASD often have deficits in equilibrium and righting reactions (moving the body to maintain an upright position), protective reactions (putting a hand out to catch yourself when falling), and movement strategies (persistent w-sitting). These differences may present as clumsiness, lack of coordination, lack of attention, hyperactivity, gross motor skill delay, flat feet, toe-walking, postural instability, poor posture, decreased respiratory control, oral motor difficulty, and flexibility restrictions (Ghaziuddin & Butler, Gillberg, Kohen-Raz et al., Hallet et al., Vilensky et al.).

          During a Physical Therapy Evaluation a child’s neuromuscular, musculoskeletal, and cardiopulmonary systems are assessed. The therapist will look closely at a child’s ability to take in sensory input and control motor output. They will assess the facilitating and limiting factors for different gross motor skills, such as walking, jumping, running, stair climbing, and kicking a ball. Through play, the therapist can observe how a child uses his balance reactions, protective reactions, and motor planning skills, and the strategies that the child implements to move in and out of different positions. The therapist also observes the child’s posture in a variety of positions, and how the child’s posture affects their breath control, oral motor control, and vocalizations. The therapist will analyze which muscle groups are being overused and which muscle groups are being underused. Joint range of motion, especially for overused muscle groups, such as the calf muscles for children who persistently walk on their toes, is measured. Joint laxity is also assessed, especially for overstretched joints, such as for flat feet or for a child who often locks their knees and elbows.

          During a Physical Therapy Treatment a child may work to:
          • Improve postural control to increase stability during fine motor, gross motor, and self-care activities.
          • Improve static balance to improve motor control and attention and decrease impulsivity.
          • Learn to perform the ideation, sequencing, timing and execution components of motor planning.
          • Maximize sensory processing and organization skills to put into controlled motor skills.
          • Lay down the foundations of gross motor skills to support participation in community and peer activities.
          In addition, Physical Therapists will work with children and their parents to help the child to develop an active lifestyle. Exercise is important both for health and for self-image, such as keeping up with peers in gym class or in sports activities. In addition, aerobic exercise can decrease behavior problems and an active lifestyle will naturally give a child more sensory input.

          To conclude, children of all ages learn through movement and need to master core motor skills in order to maximize their overall potential. Beginning as infants we develop stability so that we can learn to use our hands and feet independently from the rest of the body. We also learn how to manipulate the environment and how to move our bodies within it. We use movement to bond and communicate with others and to explore our world. Limitations in motor skills can lead to difficulty with all areas of development. Physical Therapy can be a beneficial part of a team approach to help children with ASD to be as successful and independent as possible in school, home and in the community.

          ----

          References

          Ghaziuddin, M. and E. Butler (1998). “Clumsiness in autism and Asperger syndrome: a further report.” J

          Intellect Disabil Res 42 (Pt1): 43-8. Gillberg, C. (1998). “Hyperactivity, inattention and motor control problems: prevalence, comorbidity and background factors.” Folia Phoniatr Logop 50(3): 107-17.

          Hallet, M., M.K. Lebiedowski, et al. (1993). “Locomotion of autistic adults.” Arch Neurol 50(2): 1304-8.

           Kohen-Raz, R., F. R. Volkmar, et al. (1992). “Postural control in children with autism.” J Autism Dev Disord 22(3): 419-32.

          Teitelbaum, O., Benton, T., Shah P.K., Prine, A., Kelly, J.L., Teitelbaum, P. (2004). “Eshkol-Wachman movement notation in diagnosis: The early detection of Asperger’s syndrome.” PNAS; 101(32): 11909-11914.

          Teitelbaum, P., Teitlebaum, O., Nye J., Fryman, J., & Maurer, R.G. (1998). “Movement analysis in infancy may be useful for early diagnosis of autism.” PNAS; 95: 13982-13987.

          Vilensky, J.A., A.R. Damasio, et al. (1981). “Gait disturbances in patients with autistic behavior: a preliminary study.” Arch Neurol 38(10): 646-9.

          ----

          A version of this post was previously published in Autism Spectrum, Winter 2005.

          Wednesday, November 2, 2011

          Advocacy Begins With "No"

          Kassiane
          timetolisten.blogspot.com

          This story happened a long, long time ago, almost ten years now. It's still exactly what I think of when people tell me about their kid who will "never" self advocate.

          I worked for a few years with a boy who we will call C, who was about nine when I met him. He was nonverbal, really hated typing on the computer, knew a few signs, and had a PECS book. He had experienced many years of ABA therapy, which is very much therapist directed, and he was growing increasingly frustrated with how things in his life were going. His frustration was pretty clear -- he was angry a lot of the time and he was lashing out physically when a lot of demands (or unpleasant demands) were made. His PECS book often didn't have what he wanted to communicate in it, so that added further to his communication challenges. What he was left to communicate with was behavior.

          I'm pretty sure C's parents weren't exactly looking for self-advocacy teaching, at least not what I do. They had the whole "autism as tragedy" thing going on, were into quackery, kind of seemed to resent C for existing (ok, so very much resented C for existing) and wanted compliance and normalcy, not what I was offering.

          But C and I hit it off right away and I wasn't completely horrified by his expression of his anger. I avoided getting hit, obviously, but I wasn't going to restrain him or -- nearly as bad -- throw more and more demands in his face when he was upset. That's silly. It does not work. Typicality is not a realistic goal, but being able to express wants and needs is realistic, and it was quite likely that C could learn a more expedient way to make his wishes known.

          When I started working with C, I had a rule for his ABA therapists and parents: if C makes clear a want or a need, he gets it. If he indicates that he doesn't want to do same with same or whatever, he doesn't do same with same. If he indicates that he is not ready to leave an activity, he doesn't have to leave yet. He needed to learn that he has some agency after so many years of following other people's agendas.

          What's the first thing little kids tend to learn, to take power over their lives in small ways? The word "no," right? I wanted C to learn to say no, learn that he could ask for things and get them, learn that he could say he didn't want to do things and have his wishes respected. A lot of our time was spent playing, with him indicating he wanted or didn't want things, and me putting into words "No, don't take your block? Alright!" or something similar when he indicated in any way that he didn't like what I was about to do, or did like or want something. I wanted to show him that adults could take his wishes into account.

          Then I took C swimming one day. This was something his ABA therapists didn't like to do very much because apparently it was a battle to get him out of the pool, he liked swimming in the deep end even though he wasn't an awesome swimmer and keeping him in the shallow end could be meltdown-inducing -- he could swim, but needed an adult right next to him. It was not a battle I wanted to fight, but I'm also not a fan of the Adult As God paradigm. I liked swimming and I liked C, so it was a good time.

          We did some laps, we (well, C) splashed around in the shallow end, and fifteen minutes before we actually had to leave I asked C if he was ready to get out.

          "NO!"

          Clear as day, emphatic, and with feeling.

          Yeah, we didn't get out of the pool for another ten minutes. C indicated no, he was enjoying himself, he did not want to leave. And he did it in a way that no one could deny -- no is an important concept in making one's needs known, and everyone knows what it means.

          He used the word NO a whole lot -- they made him do a lot of inane things (touch nose? Really???) and he didn't want to. I don't blame him; "touch nose" is not exactly a meaningful activity. He started indicating preferred activities and even started helping make a schedule of stuff to do during his sessions (or what toys we'd play with and such ... interactive toys for demonstrating "I don't want to" or "don't do that" are pretty great).

          Then he stopped and started biting again. Being bitten hurts. Biting wasn't getting him what he wanted. "What. Did. You. Do?" was my question to the ABA person.

          "Oh, he didn't want to do (some meaningless task) and I hand-over-handed it."

          "What the hell is wrong with you?" (Insert about fifteen minutes of me yelling at full volume about how it was C's body and he had a right to not be touched and he had a right to determine his activities, and she owed him one hell of an apology, and he was going to get that apology. Yelling where C could hear it. And where C's parents could hear it, because they were in the same county.)

          She thought I was kidding. I wasn't. She quit shortly after -- apparently it was beneath her to apologize to a just-turned-ten-year-old, or to an autistic kid, or maybe it was being told to do so by an autistic adult, I dunno.

          And C started saying NO! again. Then we started fixing his book and set up a Dynavox, but that's a whole other story...

          ----

          This essay was previously published at timetolisten.blogspot.com.