Thanksgivings

I know several people who are posting daily "thanksgivings" throughout November, either on Facebook or on their blogs.  I didn't take up that challenge, mostly because committing myself to one more daily obligation, no matter how soul-nourishing, would have been -- well, committing myself to one more daily obligation.

But I do believe I could have blogged a Joy-Thanksgiving pretty much every day of the month.  It has been an incredible November!

Here a just a few of the Joy-Thanksgiving events of November.  Milestones, not just inchstones!

Joy's participation in her school music class annual program was more robust than it's ever been.  Her music teacher burned a CD of the songs in the program to send home, and we loaded them up on Joy's iPad so she could listen to them at will.  This year's show was in honor of Veterans' Day, so we had patriotic music mixed in with Joy's usual Baby Einstein soundtrack.  Her favorites among the program were This Land is Your Land (mama approves, even if they didn't include the populist-protest verses!) and a little marching ditty called I am Proud to be an American (not the Lee Greenwood "God Bless the USA" song, thank goodness.)  On concert day, Joy's class was stationed at one end of the risers, so Joy could stand or sit with her staff members next to her class.  She marched in place a little bit in the right place, and waved a little flag, and made it through the whole show.  Proud, proud mama!

Some days later, when GrampaK came over for lunch one Saturday, I was telling him all about the concert and Joy's participation.  Joy was on the couch with her iPad -- and as I told Grampa about the songs on the iPad, all of a sudden the iPad started singing I am Proud to be an American.  Which means that Joy not only followed our conversation and acted upon it, but she also must have gone deliberately to the music-program song list rather than playing Baby Einstein.  Oh.  My.

Then there's this e-mail message to share from one of Joy's school staff the week after the music program, which sent me over the moon for the rest of the workday:

Just have to share my goosebumps delight from the first ten minutes of [Joy] and my day.  Tons of language in context.  No cue prompts.  We sailed thru our multiple tasks and I can't stop smiling.  Wish u had been here to share

That day, something came home that made me smile even wider:  Joy's first homework.  Oh, we've had schoolwork tasks come home before, but they were always framed in terms of showing us what Joy's working on in school, rather than actually being called HOMEWORK.  I was surprised how deeply this affected me -- all it entailed was a square 4x4 grid, on which Joy was to place smaller paper squares, using the terms "take" and "put."  But the importance of it was driven home a week later, when I was asked by another kiddo on the schoolyard, "Does Joy ever have homework?" and I was honestly able to say, "Yes.  Yes, she does."

In the wake of all that, you might guess how much smiling went on during Joy's parent-teacher conference mid-month!  I was surprised to see Joy's team so well represented, having only been sure that the teacher and case-manager would be there, but her student-teacher/SEA and her speech therapist and her occupational therapist were all there too.  So much good news to share, together with ideas for how to tweak things even better!

The best piece of news from that conference, as far as I was concerned, was the piece of construction-paper artwork above Joy's locker.  It turned out that they'd had a class project making construction-paper clouds with rainbow bands dangling below, where each cloud had the student's name and each rainbow band carried an adjective describing the students.  Most students came up with their own, but since that's not Joy's scene just yet, the teacher invited the students to help come up with a rainbow of adjectives for Joy.  She said they were just tumbling over one another with suggestions, and the themes were all directly from the kids.  Here's what they came up with:


Sensitive
Outdoorsy
Technical (they refined this one from "computer-y" in admiration for her iPad mad-skillz!)
Swift
Beautiful
Musical


Even after just a couple of months, my daughter's classmates know her really well, don't they?  Because that rainbow there is an awesome representation.

The LEND trainee who came along to observe the conference was deeply impressed, and we had a fine conversation afterward about the importance of inclusion even when a student isn't in the classroom.  (There's a whole 'nother blogpost in there, my friends!)

But wait, there's more.

This past week, Joy was invited to not just one but TWO birthday parties, together with her sister.  On back-to-back days, yet!  The first party was for a neighbor and the venue was a bounce-house facility.  How perfect is that?  Joy bounced and bounced, and repeatedly tossed a bouncy-basketball up through a basketball net (from the bottom up, rather than making a basket, but who's counting?)  Then after an hour and a half of bouncing and sliding, the kids all herded into a room with tables for cake and ice-cream and present-opening.  And Joy sat down between two kids she didn't know, with Rose a little way down on the other side of the table.  Once we got her served with goodies and lemonade, I went over to the edge of the room and sat on the benches with the other parents.  And stayed there, while Joy competently ate by herself and drank her drink and hung out uncomplainingly!

While I sat, a gregarious dad with a German accent served me cake, and then asked me if that blonde girl in the green shirt was my daughter.  "Yes," I said, preparing for the usual autism-solidarity conversation: is she on the spectrum, I have a close relative who is, etc.  "She looks so much like my niece!" was what I heard instead.  "I did a double-take, she could almost be her twin!"  JUST LIKE ANY OTHER KID.  No disability-related content to the conversation AT ALL.  I can hardly remember the last time I had a conversation with a stranger about my daughter that went that way.

And then we had another party the next night, for a classmate of Joy's, who also has an older sister who's a friend of Rose.  This one was at a gymnastics-sort of facility, with crash pads and climbing ropes and play structures and swingsets and free arcade games like air hockey and basketball.

Joy shot hoops with glee, over and over.  Look at her go!

Among the guests were classmates both past and present, who are happy to interact with Joy but also to give her the space she needs.  Then crowning delight came when we learned that the birthday girl's mom had assembled a special goody-bag just for Joy, full of stimmy-delights instead of the pencils and Blow-Pops that interest her so little.

Daily Thankgivings are hardly enough.  We are grateful beyond words to see our daughters grow and mature and move forward.

May your own celebrations of gratitude be plentiful and delightful!

Princess Adventures

I started out as one of those moms who was going to take a stand against the whole princess-i-fication of little girlhood. No Disney-princess videos or clothing or toys or other assorted stuff for my money, thanks! We tried to hold off on the Barbie thing too. But the culture is persistent. There are ads and Happy Meal toys and sweet relatives who give Christmas gifts, and Rose's first Barbie that came when she broke her arm (by way of an emergency-room staffer)! So the princesses have encroached, and I kinda learned to live & let live.

And this year, the princesses saved my bacon for Halloween.

For some reason, Halloween costume ideas didn't flow freely this year. We've had some really cool themed-costumes where we dressed the girls in a coordinated way, like last year's pirate wench (Rose) and hook (Joy). Last year's Halloween post took a trip down costume memory lane, as I perused old photos with my college classmate whose daughter Elizabeth is our regular trick-or-treat companion.

We'd sort of settled on costumes whereby Rose would be a soccer player -- just wearing her soccer gear -- and Joy would sport a soccer ball on her sweatshirt. But then Elizabeth's mom made an offer we couldn't refuse. She just happened to have princess dresses from two of Elizabeth's previous Halloweens, a magnificent home-made Snow White dress and an elegant dress from a couple of years later. Would these possibly fit our girls?

Oh yes, and perfectly.

The Snow White dress was comfy cotton, just the thing for a kiddo who gets distracted by too many furbelows. Though at first glance Joy doesn't look just thrilled in the above pic, she's actually mugging for the camera here. That grimace is her current "cheese" smile! (I love it that my daughter should have figured out a "cheese" smile!)

Our trick-or-treat group was a large one, between the Joy-family, Elizabeth and her mom, J-Cat and his sister and parents, and two of this year's LEND trainees who are doing a family-mentoring experience with us to get a glimpse into what it means for our family that Joy is who she is. The noisy crowd didn't seem to bother Joy, though. She was remarkably chipper and cooperative as we traipsed up one side of the dark street and down the other, making a fine effort to convey candy from the proffered baskets into her plastic pumpkin, and ringing the doorbell with minimal prompting when it was her turn. Of course it took a parent keeping a solid hold on her hand and guiding her with the group every step, but she didn't protest a bit.

In fact, she didn't even protest when the clock struck midnight, and the prince pursued her down the flight of marble stairs leading from the palace, and her glass slipper fell from her delicate foot...

You may think I've got the wrong fairy tale here, but bear with me.

As JoyDad shepherded our princess toward the second-to-last house we were going to take her to, he suddenly looked down and noticed that Joy was missing a shoe. It was hard to catch in the darkness, because she was wearing dark pants under her dress, and dark socks, and the little velcro tennies were a dark brown. But somewhere along the line she had stepped out of a shoe, and trotted on entirely uncomplainingly!

You can perhaps imagine how it looked then, as our large party suddenly began to retrace the route. It was only up and down one block, but we didn't know how long the shoe had been gone, we didn't have flashlights (duh), and there were nice brown autumn leaves all over the place. We ended up back at home with a single-shoe princess, and even two more search party forays with flashlight did not find the elusive footwear.

Well, Joy ended up playing back indoors, cheerful as could be, while I chatted a while further with the LEND trainees. Rose and company went on trick-or-treating -- she eventually brought home a HUGE stash of candy, apparently having told at each house the sad story of how her sister-princess had lost a shoe and had to stop trick-or-treating and so could I please have extra candy for my sister?

Then after the trainees had gone, and the house was still, the doorbell rang once more. It was the prince! And the royal grandma! Well, OK, it was one neighbor each from the two houses in between which we had discovered that the slipper had been cast. The two of them had gone out in search of that elusive little shoe, and had found it for us!

And it fit perfectly, and we all lived happily ever after.

Taking Action on CARA

UPDATE 9/15: I just got the following e-mail from Autism Votes:

We have learned that House Majority Leader Cantor has affirmed his pledge not to allow the federal commitment for autism to expire by supporting the Combating Autism Reauthorization Act (CARA) of 2011 and allowing the bill to go to the House floor for a vote early next week. Thank you so much for all your hard work the last few days in sending him emails and making phone calls.

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I've got several blogposts backed up in a jumble in my mind, but I'm going to hit an urgent advocacy-alert one first.

The Combating Autism Reauthorization Act of 2011 (CARA) needs our help to pass by September 30th.

CARA is a 3-year re-authorization of federal funding that's been in place since 2006, which was first passed during the GW Bush administration. The funding focuses on expanding research and coordination through the National Institutes of Health, increasing awareness and surveillance at the Centers for Disease Control & Prevention, and expanding the interdisciplinary training of health professionals to identify and support children with ASD and their families.

For me on a very concrete level, growing from how Joy has propelled me into autism advocacy -- this is what funded my LEND training two years ago, an amazing program that Elvis Sightings readers heard about at length as my LEND year progressed. Via a state implementation grant, it also made possible the summer work that I did in 2010 on a recently-released publication called Finding Your Way: A Navigation Guide for Families Who Have Children and Youth With Special Health Care Needs and Disabilities.

On a macro level, this funding has helped with great strides in research and education and awareness all across the country. We can't let it stop now!

The key legislator right now is House Majority Leader Eric Cantor, who was a co-sponsor of the original 2006 act and must bring CARA to the House floor for a vote in order for it to pass. UPDATE: He pledged to do it!! Can you give his office a quick call? Here's the phone info & a short script:

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Call House Majority Leader Eric Cantor and politely ask him to allow the Combating Autism Reauthorization Act (H.R. 2005) to go to the floor for a vote. CALL HERE: 202-225-4000

What to say:
"Hi. My name is [name] and I am calling to ask Leader Cantor to allow HR 2005, The Combating Autism Reauthorization Act, to go to the House floor for a vote. The funding is crucial for research and awareness on autism, and support for children with autism and their families. Thank you."
================

If you've got another couple of minutes, here are some quick next-steps:

1) Follow up the call to Cantor's office with an e-mail -- this link will help generate one for you! Here's a new link to communicate a thank-you message!

2) E-mail your own Senators & Representative: if you follow this link to the Autism Society "Vote 4 Autism" page, you can read more about CARA and then click on the "Take Action" button to send messages to your legislators.

Thank you so much, in advance!

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P.S. The initiative is crucial but the title of the law is... unfortunate. I like the acronym CARA much better, meaning "dear" or "beloved" in several languages.

Whole Lotta Comparing Goin' On

I met a little Elf-man, once,
Down where the lillies blow.
I asked him why he was so small,
And why he didn't grow.

He slightly frowned, and with his eye
He looked me through and through.
"I'm just as big for me," said he,
"As you are big for you."

-- John Kendrick Bangs

I've written before about how hard it is not to compare. Or, I suppose more importantly, how hard it is not to make destructive comparisons. In the post I just linked, the comparing had to do with Joy's developmental trajectory versus Rose's. In Joy's (still rough) kindergarten entry right now, the obvious comparison is to her neurotypical classmates, with whom she's not able to spend very much time at all right now.

There are many other ways to compare destructively, though. One can make comparisons along the autism spectrum, for example. As in, my child is less impaired than your child, so we can at least feel superior there. Or -- my child is more impaired, so I should feel sorry for myself and you should feel sorry for me and we all should feel sorry for him/her. Or cross-disability comparisons -- I just read an interesting piece at Reports from a Resident Alien from a spectrum perspective, cautioning people with autism against falsely building themselves up at the expense of people with other more "severe" disabilities.

Funny enough, parent bloggers do the compare thing to ourselves too. For example, I've been seeing a delightful set of new spectrum-parent-bloggers setting up blogshop, and find my recent blogging to stack up poorly next to the wit and the insights and the speedy build-up of followings and commenters... as I am posting less often, less in-depth, finding it harder to find suitable words to write about this part of the journey. Difficult not to cringe at the comparison. My dear friend over at Autism in a Word wrote recently about her struggle with becoming too focused on the hit counter and the pats-on-the-back in the comments. I may need to consider doing as she did, and taking a blogging break... but depriving myself of this community might not be healthy for me either.

Then there's the self-flagellation self-comparison within the professional sphere, eloquently expressed over at Professor Mother (another fine relatively-new blog). Oh, does it resonate. I'd been hoping that all the wonderful new knowledge and contacts I'd gained through the LEND program last year would create some new opportunities for me on the professional score, an area of my life that's been less than ideal in recent years -- but that's not turning out to be a obvious path either, particularly in this economy.

I need to figure out how to hang on to being "big for me" and keep out of the destructive comparison cycle. Sometimes it's just not easy to see.

Product Hits and Misses: Universal Design Edition

In honor of the LEND program from which I just graduated yesterday (!!), I've got one more seminar topic to pay forward.

So for quite a few years, the vegetable peeler of choice in my kitchen has been the Good Grips peeler from OXO. It's got a comfy wide handle, it's sharp as the dickens, and it slices off a nice thin reliable peel every time. Been using it for years.
What I didn't know until recently was that this product was originally designed to make vegetable-peeling more comfortable for people with arthritis -- as well as everyone else. Now, if they'd viewed and advertised it solely for the arthritis market, it would have been a tiny little adaptive niche item, sold in special needs catalogs, nobody who didn't have arthritis would have thought to buy it and even those who did would be aware of a certain stigma of using such an item ("sigh, it's a great product but it just makes me feel so old!") But that's not what they did. They had the foresight to realize and capitalize on the fact that what was good for arthritis in this product would be good for a whole lot of people, with or without vegetable peeling challenges -- and they've got a whole line of highly popular kitchen utensils now.

The Good Grips peeler is a fine example of Universal Design.

Universal Design is defined as "the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design." The concept rests on seven principles, which are spelled out in detail at the Center for Universal Design at NC State University. I'm going to list just the principles and their basic definitions here:

Principle One: Equitable Use -- The design is useful and marketable to people with diverse abilities.

Principle Two: Flexibility in Use -- The design accommodates a wide range of individual preferences and abilities.

Principle Three: Simple and Intuitive -- Use of the design is easy to understand, regardless of the user's experience, knowledge, language skills, or current concentration level.

Principle Four: Perceptible Information -- The design communicates necessary information effectively to the user, regardless of ambient conditions or the user's sensory abilities.

Principle Five: Tolerance for Error -- The design minimizes hazards and the adverse consequences of accidental or unintended actions.

Principle Six: Low Physical Effort -- The design can be used efficiently and comfortably and with a minimum of fatigue.

Principle Seven: Size and Space for Approach and Use -- Appropriate size and space is provided for approach, reach, manipulation, and use regardless of user's body size, posture, or mobility.

We had some interesting small-group work in the seminar, each table of students analyzing a group of products that were placed on our table, and then making forays through the building to critique design issues from the perspective of case-study scenarios -- if you were a person with certain challenges and needed to do a certain daily-living sequence of tasks in the building, how does the current setup help or hinder?

It made me think of some everyday products and some recent experiences with Joy.

Consider these two battery-powered toothbrushes:


The Dora-toothbrush on the left, from Colgate, is the first one we tried when we decided to try the battery-powered toothbrush thing with Joy. It was a good success. She can turn it on and off herself with minimal support (the pink buttons just above Dora's head), and likes the feel of it in her mouth.


However, eventually it wore out, and when I went to get another one (I think I'd forgotten which store I'd gone to), the Colgate/Dora one wasn't there. So I grabbed the one on the right, the Little Mermaid from Oral B.

Not a good move. Not only was the toothbrush kind of ugly -- the lithe form of the Little Mermaid doesn't lend itself well to wrapping around batteries! Look at the on/off switches -- the on switch is right between her clam-shell bikini, while the lower button approaches her maiden-bits. Why didn't the designer dude (it HAD to have been a guy) just put the on-off switches horizontally, press the right clamshell for on and the left for off -- but I digress. More importantly, the buttons were hard to push. Joy couldn't summon that extra force, and got very frustrated with it. In addition, the bristle-movement was more extreme, and if you didn't get the brush into your mouth right away (and Joy's not that fast with it), it would fling little bits of toothpaste around.

Big universal-design fail on the "low physical effort" principle, plus being ugly and kinda demeaning. We went back out and sought Dora in particular. Accept no substitutes.

Here's another example from our everyday life -- the door handles of our two vehicles.

Our Honda CR-V, which we've had for 10 years now:



Joy cannot yet operate this handle. It takes a pretty sturdy pull, and you pretty much have to wrap your hand around the handle to do it. (Principle 6, low effort). It also doesn't pull straight out, but pivots such that the right side stays in place and it's really the left side that you're pulling out (Principle 3, intuitive).

Fortunately things are better from the inside, when it comes to pulling the door shut:



Look at that nice long snaky handle, with multiple places and heights to grab and pull. You could even use that holder-space lower down as a place to pull if that were more comfortable for you. (Since we have the child-lock on at all times, the door-open handle from the inside doesn't enter our calculations at this point). Joy does well at pulling the door closed, though it's kind of a heavy door and does take some effort.

Then we have our new car, the Honda Fit that we got just about a year ago. With this car, Joy can let herself in.



The handle pulls up, pivoting along the entire top length, with a minimum of effort. As long as you get your fingertips under, you don't have to wrap your hand or anything.

But oh no, what did they do to the inside?


There's only one little place to put your hand and pull. And it's only at one height, which isn't a good height for Joy because she's buckled into a car-seat by the time she needs to close that door. Fortunately she can do it if she stretches. And the door pulls easily, which is a plus. But why couldn't they have provided options, like the long snaky inside pull-bar did in the CR-V? (Principle 2: Flexibility in Use.)

I want to leave you with one final statement here, something that one of my LEND-trainee colleagues quoted in his final Leadership Presentation the other week. The quote applies to systems of health care, and it struck me as really thought-provoking, implying the applicability of universal design for systems well beyond toothbrushes and veggie peelers and car door handles:

Delivery models that work for populations with special health care needs will have applicability for everyone.

It's not just about what's good for special needs. It's about what's good for ALL of us. Universally.

To all my readers -- thank you for providing a sounding board and the opportunity for me to reflect on this year's LEND experience. This has really been a pivotal year for me in moving toward what I want to be when I grow up! :-) The journey continues, and it's so good to have so many people sharing that journey with me.

Conference Report, Part 3: Eric Courchesne

The third and final installment from the Autism Society of Wisconsin conference is the Saturday afternoon keynote by Eric Courchesne, director of the UCSD Autism Center of Excellence. His talk was called "The Neural Origins of Autism: Evidence of Prenatal and Early Postnatal Brain Growth Abnormalities."

[Note - I'll be calling him by his first name, as I did with Paula Kluth and Temple Grandin, though in each case the more formal choice would be the title "Dr."]

In contrast to Temple Grandin's wide-ranging themes, Eric's presentation built a thesis. He started by referring to a 2009 report from the Information Centre of the UK’s National Health Service that found an ASD rate of 1 in 100 among adults in England, using modern diagnostic standards. This converges with the 1 in 110 rate for children in the US as published by the CDC this past December... in other words, he was taking the stance that the autism "epidemic" has much more to do with diagnostic changes than with a true rise in the condition. (The England study has been somewhat controversial, and Eric was careful to caution that it needs to be replicated before we can give it too much weight.) Come to think of it, Temple hinted at a similar position in her presentation: "Geeks and nerds have always been here... Who do you think made the first stone spear? It wasn't all the yakety-yaks around the campfire!"

Eric went on to point out that until recently, much of the brain-scan research in autism has been done with adults. But if you want brain research to illuminate the "why," you need to start much earlier, back to the age at which atuism first begins to be apparent. So he and his wife, fellow researcher Karen Pierce, have been working on brain studies with little tykes.

One set of results focuses on brain size. It's well-established that people with ASD have unusually large brain size. Courchesne et al (2003) looked children with autism or PDD-NOS and traced their head circumference (HC) records back to infancy. The findings: birth HC of the infants with ASD was smaller than the norm, but shot up to a mean at the 84th percentile by 6-14 months. The children with autism had a greater increase in HC than the ones with PDD-NOS. [This rings true for our Joy, by the way. Her head was at the 70th percentile shortly after birth, 95th percentile by six months, above the 97th by 9 months, and has never gone below that figure since. Rose had a sizable head too, 90th percentile at 12 months, but back to the 82nd percentile by 2 years of age.] Anyway, Eric listed 7 other studies in support of this finding, starting with Dementieva et al 2005.

The next work he described involved doing sleep-MRIs on one-year-olds. To get the right group of little ones to scan, Eric and Karen have set up a network of primary care physicians who do a screener at age 12 months to identify children who show early signs of ASD. Those identified as at-risk then become potential research participants. This network & screening impresses me as a two-in-one coup, by the way -- not only does it serve the research, but it gets the kids screened! I've learned via LEND that there is surprising hesitation in the pediatric community when it comes to implementing standardized developmental screening, whether for autism or just in general.

Anyway. Not only are these MRIs confirming large brain size in children with ASDs (particularly frontal & temporal lobes) but are also showing that autistic-tyke brains are responding differently to normal speech, with activation on the "wrong" side of the brain.

So where are these brain overgrowths coming from? Is it more brain-cells, or something else? Cadaver research on small children can be a hard thing to think about because there's always a tragedy underlying, but generous research donations by bereaved families has allowed some study that actually counts brain cells -- with the astonishing result that the brains of children with ASD had an average of 55% abnormal increase in the actual number of cells!

AND. Eric drove this home hard. Almost all brain cells are generated PRE-NATALLY, second & third trimester. The overgrowth in numbers of brain cells cannot be caused by vaccines.

So why don't symptoms show till later? He showed a fascinating slide illustrating human frontal cortex development. Even though newborns have all their brain cells, those cells are small and have few connections. But between the ages of 6 months and two years, the cells themselves grow and circuit formation goes wild. At that point, the difference in number of brain cells and how they connect begins to really matter.

Eric's lab is currently studying the layers of the cerebral cortex, a process that he expects will lead to identification of genes that are implicated in layering defects. He spoke of his hope that within 6 or 7 years, that the understanding of the brain-basis of autism will jump by leaps and bounds. As he made this prediction, he became choked with emotion... "I have tremendous hope," he said.

When Eric talks about the importance of brain-based autism studies, he also speaks very strongly about the massive waste of research dollars that have been poured into the generally-discredited vaccine causality hypothesis. This infuriates him. And it's not just a casual opinion with him. It's very personal. You see, as he climbed the steps to the stage, he had to support himself with his arms because his legs don't work quite right. He had polio when he was four years old, in the last epidemic wave before polio was essentially wiped out.

By vaccines.

He got a standing ovation at the end of his presentation.

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Note: sorry that my referencing of particular papers fell off after the first bit of the presentation. I thought I took better notes than that, but apparently not. Please be assured, though, that every one of the findings was backed by peer-reviewed, published articles, and that Eric took great care to mention the extent to which his work has been replicated. Unlike, and he made this point very clearly, the work of a certain Andrew Wakefield, recently retracted by the Lancet.
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Thus endeth my conference reporting. I hope you can see why it seemed important to me to share all three of these presentations! Thank you for hanging with me. I think that as LEND winds down, we'll be returning to our usual Joy-based programming here on Elvis Sightings.

Conference Report, Part 2: Temple Grandin

Before the Autism Society of Wisconsin conference slips entirely out of sight in the rear-view mirror, I want to report (as promised) on the second keynote, Temple Grandin. [Note - I'll be calling her by her first name, as I did with Paula Kluth and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]

Temple Grandin's book Thinking in Pictures was the first book I read after Joy's autism diagnosis that presented a perspective from within the autism spectrum. Her account sparked some of my first searching questions about the nature of autism (such as, does everyone with autism think in pictures?) I was so pleased to get a chance to shake her hand at this conference, and get her autograph on a copy of The Way I See It, which I thought I might read on the Kansas car ride, but it keeps slipping down the stack as I take one other books with deadlines like library due dates...

The talk was called An Inside View of Autism and ranged across a variety of topics. As I look at my notes, they're rather a collection of insights rather than an arc of a lecture-long argument -- but it was engaging all the way through. Temple is an accomplished lecturer, an achievement that is reportedly the work of many years. A friend of mine who was also at the conference had heard her speak over a decade ago and compared the two: at the earlier talk, she had relied on self-talk techniques such as "OK, I need to tell a joke here so you won't all get bored." Over the years, she has taught herself to weave the jokes in seamlessly and to move about the stage as a comfortable speaker often does.

Here are some nuggets from the presentation:

Remember how I mentioned in my GFCF post that Temple Grandin was a proponent of "the diet"? Well, she is, but in a more nuanced way than the folks who claim a 90% success rate. Her take: "Out of ten kids with autism, it might work for one or two." But for the people for whom it works, like herself, the improvement is a powerful change for the better. (She also mentioned Omega 3s, and cutting sugar and carbs as well as going GFCF).

My skeptical heart rejoiced to hear her lay into the "rubbish on the Internet"! She directed people to PubMed, the database search tool from the National Library of Medicine that searches published articles in biomedical sciences. (Librarian-ish note -- unless you're affiliated with a university, you'll mostly be able to get just citations and summaries of the articles. But still.)

She had high praise for the Temple Grandin HBO movie with Claire Danes. She said that the movie succeeds in portraying how her visual thinking works. As for the acting, "Claire Danes became me in a way that was really weird!" (I gotta see this movie. I usually don't miss having HBO at home, but this is one exception!)

Temple had an interesting take on behavior and manners. She has a hearty appreciation for how manners were taught when she grew up in the 1950s. It makes sense to me that a well-defined system of rules would be appealing to a mind of a certain structure! However, I've recently seen this used negatively in comments relating to a bloggy dust-up about how people see "us" (kids on the spectrum and their parents), as in: if Temple Grandin thinks that kids with autism should be taught 1950s manners, then it must be the parents' fault that they're acting out in public. Which doesn't sit well with me, having just been party to a clean-up of fist-flung jello. It's not that easy. And I'm not sure that Temple was saying that it was.

One final quote-nugget, which Temple offered in response to a question regarding trying to get appropriate services from a school district in a difficult situation. "Your project is for your son to be successful." The corollary was that being right in fighting with the school was less important than being a clever negotiator, swallowing pride when prudent to get to a place that would better support the child's success.

Our project is for our child to be successful.

Yes.

Conference Report, Part 1: Paula Kluth

I almost feel like I should say "Didja miss me?" yet again. It's been a very full week since returning from the Autism Society of Wisconsin (ASW) conference a week ago Friday. Many spinning plates, and per usual many are Joy-related, from conversations about inclusion at church to the fact that we've got her IEP meeting this afternoon to plan for kindergarten in the fall.

But I promised some conference-reportage!

One lovely piece of convergence at the conference was that Joy's itinerant special-educator, who leads Joy's school district team and has been coordinating the IEP prep, attended the first few days of the conference as well. I'm loving the fact that the person with whom we're writing Joy's first ever official behavior plan... also attended the conference day-long workshop with Paula Kluth, a session called The Problem with "Behavior Problems:" Supporting Students with Autism & Other Disabilities. [Note - I'll be calling her by her first name, as I did with Temple Grandin and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]

Paula put "Behavior Problems" in quotes in her title on purpose. It seems that throughout her career around these issues, she's been wanting to write and speak about the "supporting" emphasis while publishers (and conference producers?) bring the pressure to use language that explicitly references "behavior." Which makes sense with the generally-used language -- Joy's going to have a "behavior" plan and all that -- but I love the move to change the conversation.

One way in which the workshop enabled that conversational change was to challenge the attendees to do some self-reflection. For example, one set of questions that we discussed in small groups was "When do you behave badly? What helps you "recover" from your own bad behavior? What is one effective and positive behavior strategy that you have used?" I bet that nobody had trouble coming up with personal examples; I know I didn't. Attendees reported behaving badly when they're hungry, tired, offended, stressed, overwhelmed, when people won't listen, when they're having a hot flash!

Then Paula asked these questions around effective strategies: Did anybody say, "I can't calm down until...

• someone drags me away?
  
• someone enforces an immediate negative consequence?
  
• someone yells at me enough?

So why is this the kind of strategy that so often comes into play for students with disabilities? when what really helps the conference attendees in their own "behavior problems" is more along the lines of: have a snack; change of venue; exercise; walk away; etc?

Really, who among us wants someone to come along and try to "change our behavior" anyway??

But we can all use a little helpfulness and support along the way. The reframed question, as the presentation put it, becomes "How can we effectively and sensitively support individuals with disabilities?" or more broadly, "How can we be helpful to people?"

So, what does seem to help? In very broad strokes:

• Being surrounded by people who care
  
• having meaningful social relationships
  
• being in a comfortable setting
  
• having an engaging curriculum (driven by novelty and joy, as opposed to "death by sight-words")

Another nugget from the day that I found very thought-provoking was reflection on "shepherds," i.e. how very much adult-presence and "proximal support" students with autism often have. How much of the hovering and correction -- y'know, those things we do because it's good for them, right? -- is necessary and how much not? Do we expect students with disabilities to be "on task" for more of the time than students without disabilities?

Well. The workshop was chock-full of anecdotes and suggestions and excellent ideas for providing appropriate support through environment and materials and relationship-building. It was actually so much as to be an overload, and if I try to reflect much of that back in bloggy format, I'll just be transferring that overload. It struck me as the kind of thing where, once you've got the right framework in your consciousness, there were almost enough ideas to be presented in a "strategy of the day" daily calendar format!

For me, what was truly important about the workshop was the framing -- the commonalities -- the sense that it's really all about being human and how we all react.

Here's a quote that didn't come from the presentation, but rather from a favorite album of mine when I was a kid, Free to Be You and Me:

Some kind of help is the kind of help
That helping's all about
And some kind of help is the kind of help
We all can do without!

For more information:
http://www.paulakluth.com/
including one particularly helpful page on being calm in crisis
The article is adapted from her book You're Going to Love This Kid: Teaching Students with Autism in Inclusive Classrooms.

Oil of the Snake

The deliberately-deceptive "quack" doctor is a well-recognized figure both in history and in fiction, particularly western movies and novels. I have a cousin who wrote a book on three such charismatic con men of the 20th century, including one John Brinkley who promoted transplants of goat glands as a cure for infertility or lost virility (and also ran for governor of Kansas!) One slang term for such characters is "snake oil salesmen."

Ah, but nothing is as simple as it seems. Turns out that the term "snake oil" comes from a particular Chinese medication, a product of the Chinese water snake, that is still used for relief from arthritis and joint pain. The jump from traditional Chinese medicine to association with American quackery may have come about when Chinese immigrant laborers on the Transcontinental Railroad shared their joint pain remedy with laborers of European descent. Funny thing is... for the specific joint pain application, the oil of the Chinese water snake might possibly have certain beneficial properties...

The presenters in the first LEND session on alternative therapies were all students in professions who will be working with children with disabilities some day. They were exceedingly careful about keeping their own language respectful, even when they were obviously skeptical and quoted other organizations who used strong language (such as the National Council Against Health Fraud, on record that "chelation therapy of autistic children should be considered child abuse."

The term "snake oil" didn't pop up until the second set of presentations, which had family-member trainees sprinkled among the presenters -- I think that somehow the family members were a trifle less shy about bringing quack-doctor-history and anecdotes into the mix. Somehow the second session carried more history, more of a sense of the ebb and flow of popularity of alternative treatments and how a single treatment may be sold for a variety of ailments over time.

In fact, that's one of the hallmarks of potentially fraudulent, non-evidence-based treatment: a long laundry-list of what it claims to cure. Good for what ails you!

Among the treatments that were discussed in the second session (hyperbaric oxygen therapy [HBOT], auditory integration therapy/training [AIT], hippotherapy, vitamin therapy for Down syndrome), the laundry-list history came up in relation to HBOT.

Hyperbaric oxygen therapy involves breathing oxygen in a pressurized chamber to increase the blood-oxygen level. It's been around since the 17th century, and is an established treatment for decompression sickness, a potentially-fatal condition that can come about when someone goes too quickly from a pressurized situation (like deep-sea diving or working far underground) back to ordinary air-pressure. Over the years there have been various efforts to link HBOT to other ailments as well. One of the more flamboyant historical HBOT figures was a Dr. Cunningham, who in 1921 built a hyperbaric chamber 20 meters in diameter, in which patients could actually reside. He claimed that anaerobic bacteria were responsible for a whole range of ills from cancer to high blood pressure, and that an oxygen-rich hyperbaric environment would discourage/treat the bacteria. (This was the point in the presentation at which the term "snake oil" was used -- the idea of treating infections caused by anaerobic bacteria in this way may have merit, but that's different from cancer!) Dr. Cunningham was eventually denounced and his massive steel chamber was demolished for scrap metal.

More recently, HBOT has received publicity as an alternative treatment for cerebral palsy and autism. Neither of these applications of HBOT has yet been the subject of a Cochrane Review (a major go-to source for evidence-based medicine). There have been two studies of HBOT for autism led by Dan Rossignol, most recently a double-blind, multi-center trial in 2009 that found significant improvements. The presenters did point out, however, that the improvements were based on parental observation (and as I mentioned about the Elder 2006 study on the GFCF diet, parental reports can be much more enthusiastic than researcher observations.) HBOT is a relatively expensive treatment, $300-400 per session -- and the protocol in the Rossignol study involved 40 sessions.

Another therapy where a family member on the presentation team came down a little harder due to personal experience was vitamin therapy for Down syndrome -- I think the three presenters were all students of genetic counselling. The idea is that the manifestations of Down syndrome, from intellectual disability to facial differences, can be ameliorated by treating the syndrome as a metabolic condition. Some of the substances involved include thyroid supplementation, flaxseed oil, and dimethylglycine (DMG), but the list is long and varied. One of the presenters had family experience with a prominent practitioner of this approach, a Dr. Forrest Warner, known for his travelling clinics that set up in a given city for a day. Parents lined up with their children for a short expensive evaluation in which expensive supplements were recommended, to be taken indefinitely in the absence of any follow-up. Granted that this is a single anecdote, but it obviously had an impact on how the presenter viewed the therapy.

The research on vitamin therapy for Down syndrome is mostly negative, to the point that the National Down Syndrome Society has stated:

The administration of the vitamin related therapies -- e.g. the vitamin/mineral/amino acid/hormone/enzyme combination, has not been shown to be of benefit in a controlled trial, that the rationale advanced for these therapies is unproven, and that the previous use of these therapies has not produced any scientifically validated significant results. Moreover, the long term effects of chronic administration of many of the ingredients in these preparations are unknown. Despite the large sums of money which concerned parents have spent for such treatments in the hope that the conditions of their child with Down syndrome would be bettered, there is no evidence that any such benefit has been produced.

Just at the end of the presentation, someone (presenter or faculty member in the audience, I can't remember?) mentioned that flaxseed oil and DMG have some proponents when it comes to autism as well. [Good for what ails you?]

Next up, auditory integration therapy (AIT), presented by audiology students. Given the alternative status of AIT, I suppose it's not surprising that this was not something the presenters had been exposed to in their studies to this point. In fact, they were having a hard time trying to understand and explain what exactly was involved. The claims for the therapy for autism spectrum disorders involve increased attention span and eye contact, and improvement in abnormal sound sensitivity. The therapy itself involves listening via headphones to specially modulated music 2x/day for 10 days (I believe this was the Berard method.) Cost can be in the neighborhood of $2000.

There's been a bit more research regarding AIT for autism; a 2004 Cochrane Review found 6 studies worth addressing, which ended up measuring a variety of outcomes and reported mixed results. One potential risk may be that the sounds could be damagingly loud, but I don't have a citation for that. The group concluded by citing a technical report from the American Speech-language Hearing Association (ASHA) stating that AIT has not met scientific standards for efficacy and safety and should be considered experimental.

The only presentation I haven't discussed yet was the one on hippotherapy, which (contrary to the word's appearance) does not involve hippopotamuses! "Hippo" is the Latin root word for "horse," and hippotherapy is a strategy that uses horseback riding as part of an integrated intervention program in cases of neuromusculoskeletal dysfunction, a program that may include physical therapy, occupational therapy, or speech-language. The movement of the horse is said to mimic the human pelvic movement of walking. Hippotherapy has a full-blown association (founded in 1992) and a certification board (since 1999) and the presenters' handout listed a whole slew of practitioners in our state. Risks are not extensive -- allergies, and the fact that a horse is a large and potentially unpredictable animal -- and proponents claim gains in patient self-confidence along with the therapeutic gains.

However, hippotherapy is one of the explicit exclusions in our state's recent autism insurance mandate -- along with HBOT, AIT, chelation and special diets, come to think of it. Barbara at TherExtras had some reflections on hippotherapy (to some extent in conversation with me!) a month ago, exploring the ramifications of pushing to get hippotherapy recognized as medical treatment. One of the LEND faculty brought up a related note when she compared the self-confidence gains from hippotherapy to what might result from participation in organized sporting activities.

Thus endeth the roundup of our LEND explorations into alternative therapies. Just to reiterate, every one of these alternative therapies has its enthusiastic proponents and its skeptics. Some have been quite thoroughly discredited, others are squarely in the "need more research" category and that research could tip either way.

One piece of advice that I'd offer for folks gathering information on an alternative therapy. I would suggest searching the following sources for a pull-no-punches skeptical take:

• Respectful Insolence
  
• Quackwatch

Even if they speak of any given therapy in harsh or off-putting terms, it's a useful counterweight to potentially overly-enthusiastic claims. And not all of the therapies listed in these past few posts are evaluated there. (For example, hippotherapy is not mentioned on either site.)

One final note. Back when Barbara (TherExtras) and I first met, we had a conversation about craniosacral therapy. She included in her post the following Bible verse, which had been in the readings at her church that week:

Why spend your money for what is not bread; your wages for what fails to satisfy? -- Isaiah 55:2

That verse was among the scriptures read at my church this past week.

No coincidences!

When a mother says something works...

[Update: A revised version of this post has been published at The Thinking Person's Guide to Autism, July 2010.]

One side effect of Joy's ongoing love of Baby Einstein videos is that I've practically got them memorized, including the self-promotion stuff that comes at the end of the VHS tapes. Baby Einstein's creator, Julie Aigner-Clark, touts the benefits of her series with testimonials from various Baby Einstein devotees. Somewhere in the middle of the promotion, she herself says enthusiastically,

When a mother says something works, you automatically try it!

She wasn't talking about alternative therapies for autism. But perhaps she might as well have been.

Two things today are making this connection for me. One was the second half of the alternative-therapies presentations by trainees in my LEND seminar.

The other was coming home to find Jenny McCarthy highlighted in the pages of the Time magazine that just arrived today. Jenny McCarthy, the celebrity face of the unproven-therapies-for-autism movement.

'Try everything,' says McCarthy. 'Hope is the only thing that will get us up in the morning.'

Karl Taro Greenfield, author of the article (and also brother to 42-year-old Noah who swims in the deep waters of the autism pool), somewhat wryly states, "it is hard to find a controversial, novel, or alternative treatment that McCarthy doesn't say has some merit."

One of the many alternative interventions that McCarthy has tried on her son and touted along the way is the gluten-free, casein-free (GFCF) diet for autism. That also happens to be the intervention about which I and two classmates presented yesterday afternoon. And I mentioned her in my portion of the presentation...

So here's some of what I and my co-presenters talked about! The gluten-free, casein-free diet is an elimination diet. To be eliminated are gluten, a protein found in grains (wheat, barley, rye, and some oats) and casein, a protein found in animal milk. Elimination diets have been around for a long time, and in general they rest on a very sound premise: if you are sensitive or allergic to something in your diet, stop eating it! The gluten-free diet is pretty much the only answer for celiac disease; if you have a demonstrated sensitivity or allergy to milk, dairy-free is the way to go. It's not an easy regimen to follow, but in those situations, it's known to be effective.

The "alternative" part of this therapy is the claim that GFCF can cure or ameliorate autism spectrum disorder -- in up to 90% of cases, according to Talk About Curing Autism (TACA). The underlying theory is this: People with ASDs are said have a predisposition to a gastrointestinal condition known as "leaky gut" or "autistic enterocolitis". The condition is supposedly triggered by an environmental insult -- vaccines, toxins, something perhaps as yet unidentified. When the condition is triggered, the hypothesis goes, you wind up with an incomplete breakdown of gluten and casein which escape through the leaky gut. The protein molecules/polypeptides travel through the bloodstream and attach to opiate receptors in the brain, leading to autism or magnifying the symptoms of autism.

According to this scenario, if you remove the gluten and the casein from the diet, the gut will heal, the opiate reaction is halted, and the autistic symptoms are alleviated -- generally in a couple of months of strict adherence to the diet, sometimes taking up to a year.

This is not an easy diet to follow, especially for someone who may already have a very restricted range of foods to begin with. It requires constant vigilance on the part of the parents, careful ingredient checking and diet balancing and making sure that gluten & casein don't slip in from unexpected sources (a playmate's cracker snagged from the floor, a bit of standard play-doh, etc.) Pre-fab GFCF foods can be very expensive. If you want to do the diet less expensively, you'll spend a lot of time in preparing foods from scratch. Recipe-sharing online can ease that burden; there's even a webpage from TACA that outlines how to do the GFCF diet on food-stamps!

The questions we were to answer for our presentation included an overview of the relevant research. There have been studies from a number of angles: measuring opioid peptides in the urine, measuring intestinal permeability, studying the outcomes of people with ASD who actually go on the diet. In all of those areas, research is a bit thin on the ground, and the results are not definitive. We don't even know for sure if people with ASDs have more GI issues in general than people without, though we do know that GI issues that occur in typically-developing folks do occur in folks with ASDs as well.

In a happy circumstance for our presentation, a consensus paper came out just a month ago in Pediatrics (a high-profile, peer-reviewed journal.) A whole slew of GI experts got together, weighed existing evidence, made consensus statements regarding GI issues and ASDs, and recommended a lot of new research. Here's a the citation to the paper and some of the statements:
Buie et al., Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report, Pediatrics 2010;125;S1-S18

• Individuals with ASDs who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without ASDs...
  
  
• The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood.
  
  
• The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established.
  
  
• Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.

Interestingly, this consensus paper received some acclaim from both skeptics and proponents of the GFCF diet as a treatment for autism. Skeptics said, "Look, here it is in black and white -- current research data do not recommend this treatment!" Proponents said, "Look at all this research they're recommending -- we're finally being taken seriously!" (OK, those were both big-time paraphrase-summaries, but I think I've caught the flavor of it).

As it happens, there are already a couple of substantial studies of the diet itself in the works. I'll be particularly interested to see the results on one coming out of the University of Rochester: the data-collection was done a while ago, and as far as I know the analysis has been marching forward. This is a double-blind, placebo-controlled study where all the participants are on the GFCF diet but at certain points one group got GFCF snacks where another group got non-GFCF "challenge" snacks. [Update 5/21/10 - that study is now complete, and did not find any significant differences between the treatment and the control group. In other words, the GFCF diet did not help.]

A previous pilot study (Elder et al, 2006) took a slightly different approach, putting only half the participants on "the diet" but providing ALL foods for both groups, such that the participants and parents did not know whether or not they were GFCF. The study did not find any significant effects on either behavior or urinary peptide levels. However -- and here's the really interesting bit -- the parental reports and the researcher reports differed markedly. Parents thought they were seeing improvements that the researchers could not document. And nine of the families decided to keep going with the GFCF diet even when they were told that the researchers' observations didn't support it.

To me, this screams "placebo effect." People see what they want to see. No wonder the claims of efficacy are so high. To others, this may scream "only parents are the trustworthy observers; researchers can't see what's right under their noses!"

I do think that the GFCF diet is a different situation than secretin, which has been quite thoroughly debunked as an autism treatment (yet at one time had claims of helping 80% of ASD patients).

The thing is, some people with ASDs do have dietary sensitivities. Just like their typically-developing counterparts. When you address those sensitivities, people feel better. When people feel better, they behave better. And learn better. And interact better.

I'm open to the thought that there are more food sensitivities out there than we're aware of. But I'm not particularly convinced at this point that such sensitivities have any special causal effect as far as autism goes. My guess is that the evidence against the leaky-gut / autistic enterocolitis hypothesis is going to start to pile up. Autistic enterocolitis as a mechanism is under a certain shadow at the moment, in that the originator of the term (Andrew Wakefield) has been recently censured by the U.K. General Medical Council and his 1998 paper that fueled much of the speculation has been retracted by the Lancet.

We have not tried the GFCF diet with Joy, because we have not seen anything that would make us suspect a dietary sensitivity if she weren't on the spectrum.

Many, many families are trying it, however. This therapy seems extremely attractive to parents, and I think there are a number of reasons why. There are powerful testimonies out there, and high-profile proponents (from Temple Grandin to Jenny McCarthy). The diet has a reputation of harmlessness, though it can be nutritionally risky if not done carefully, especially for people whose diet is self-limited to only a few foods in the first place. There's definitely a "why not try it, what can it hurt?" vibe out there -- quite a bit of peer pressure, which can be hard to withstand when coupled with the 90% success rate claims. Besides all that, dietary changes are a familiar kind of intervention. Who hasn't "gone on a diet" at some point or another? Plus it's something that people can attempt without a prescription. There's plenty of DIY advice out there, on the web and in books and in support groups.

There is value in hope. There is value in parents feeling empowered and feeling that they are helping their child, even (I would argue) for those families in the Elder study who wanted to keep going even when the researchers weren't able to document improvements. And, as I said before, the GFCF diet demonstrably does help some people with autism -- as it demonstrably does help some people without autism.

I'm afraid, however, that the pendulum has swung too far with GFCF. Ideally people would be able to choose not to do "the diet" without being made to feel guilty, or to quit the diet in the absence of observed improvement without being told that they didn't try long enough (a YEAR?!) or that they must not have been doing it right. The counterpoint stories aren't as easy to find as the primary pro-GFCF narrative, but we do exist out here!

When a mother (Jenny McCarthy or otherwise) says something works, that can carry a big emotional pull. But that alone is far from sufficient to sort out the snake oil from the truly useful, or to decide what is really worth trying.

It looks like I'll be doing at least one more post about the rest of the alternative interventions presented yesterday: hippotherapy, hyperbaric oxygen therapy, vitamin therapy for Down syndrome, auditory integration therapy. Stay tuned.

Healthy People With Disabilities

I've got an Olympics story for you. And no, it's not about how the one ice-dancing team got decked out in faux-aboriginal costumes and skated to music that included the didgeridoo.

It's about Special Olympics and public health.

One benefit of the Special Olympics program that I had not been aware of is the component that offers health screenings to the athletes. In the 1990s, Special Olympics began compiling some alarming statistics based on the results of their screenings in their Healthy Athletes program. They were finding uncorrected errors in vision (up to 85% of the athletes), and major oral health issues (68% of the athletes screened had gingivitis, 33% had at least one obvious dental decay). They ended up referring some athletes directly to the emergency room for acute pain!

Special Olympics commissioned a literature review through the Yale University School of Medicine, which reported in Dec. 2000 that compared to the general population, people with intellectual disabilities -- then called mental retardation -- have:

• Four times more preventable mortality
  
• Less access to primary and specialty health care providers, including physicians and dentists
  
• Higher rates of obesity, otitis media, asthma, cardiovascular disease, depression and other mental health conditions.

A Special Hearing on Promoting Health for People with Mental Retardation was held in the spring of 2001 by the U.S. Senate Appropriations Committee, and the Surgeon General called a conference on health disparities that December. Health disparities for people with disabilities, developmental and otherwise, have thus been on the national radar for about a decade now. There's a section in the national Healthy People 2010 goals that recognize the disparities, and the next round (Healthy People 2020) now includes draft goals like:

• Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed.
  
• Increase the proportion of people with disabilities who report having access to health and wellness programs.
  
• Reduce the proportion of people with disabilities who report unmet need for assistive devices, service animals, technology services, and accessible technologies they need.

One slide in the presentation that struck me in particular involved numbers coming out of Oregon in 2006 on health/behavior risk factors. 27.3% of the people with disabilities in the survey were smokers, as opposed to only 19.3% of people without disabilities. 30.1% of the people with disabilities had obesity issues, compared to only 17.9% of people without disabilities.

Another slide came out of Ohio State University on what health-care providers were likely to talk about when seeing a patient with a disability. Providers were more likely to ask about pain, stress, depression, work and hobbies. They were less likely to discuss smoking, blood pressure, cholesterol, mammograms, colorectal exams, or sexual activity.

The class session was a teleconference, reaching multiple LEND programs across the country. It was inspiring to be a part of a group of up-and-coming professionals who will be working with people with disabilities, discussing how one might incorporate awareness and progress on these issues into one's personal practice but also on a larger (leadership) scale. I hasten to add that we did not manage to solve the world's problems in a single teleconference... but even just having the awareness among the LEND group was an important step. I know that I'd never thought about this on a macro level.

Micro level... keep advocating for your own child, and don't let the basic health stuff get too drowned out by the special needs.

Macro level? Whew. Big issues.

Alternative Assignment

There's a joke I've heard a number of times on the skeptic blogs that I frequent:

Q: What do you call alternative medicine that's been proven to work?

A: Medicine!

We've been talking a lot on my LEND seminar about evidence-based practices. There's a hierarchy of evidence types, from the randomized controlled trials at the strong end to anecdotal reports at the waaaay weak end.

For good or ill, however, people don't automatically tend to weigh evidence in this way. Human beings are story-tellers and story-experiencers. The weakest evidence in the chain, the personal testimony, is often what pulls the deep visceral reaction for us. I had just such a conversation at a party (of all places) yesterday afternoon, with a paramedic who is hesitant to have a back surgery that is statistically quite likely to give him good relief. But, he knows too many people who have had bad experiences with similar surgeries. I shared with him in return my refusal to have a "routine" amniocentesis with Joy's pregnancy at the age of 36, primarily because I had a former colleague who lost a healthy 20-week pregnancy to a routine amnio gone awry.

Now, those are both examples of refusing medically-recommended procedures. Things get just as tricky or more so on the other side, when medicine doesn't have much to recommend and alternatives step into the gap. As I said a week ago in my post on the "cure question":

When people (parents) are desperate for a cure, and science doesn't have it, the door opens wide for uncontrolled experimentation. And quackery, alas.

I expanded further in a comment on a post from Barbara at Therextras, as we continue our bloggy cross-pollination:

I'm thinking now about the whole issue of parents -- like me -- touting "what worked for my child." All of us have to make those judgments, to decide whether a treatment is working, and if it's worth it to continue something we've started. And then, very secondarily, to what extent we want to recommend it to others. It does feel good to share good news, and to offer the positive benefit of experience. I love blogging about what works.

And yet, and yet... every one of us is mightily prone to seeing what we want to see. That's just human nature: we've made a certain investment in whatever treatment/intervention, and the whole point is that we want our kids to do better. And hence, alas, parent reports of "X worked for my child" don't get to count as scientific evidence. Maybe X did work, but maybe something else was at work too, or instead (passage of time? Some other factor?) or maybe an impartial observer wouldn't be able to document what I as a parent am perceiving?

Alternative treatments thrive on the personal narrative. They offer testimonies of hope. But they don't get to enter the realm of "medicine" without a certain level of research base, and that research has to support the intervention!

On Friday my LEND class had the opportunity to sink our teeth into some alternative treatments, in the form of presentations by fellow students. We were each assigned a non-standard intervention on which to speak for 10 minutes. Here was the first half of the lineup (the second half will be presented on the 26th):

• Full inclusion
  
• Sensory integration therapy
  
• Facilitated communication
  
• Wilbarger brushing protocol
  
• Chelation
  
• Secretin

Interesting list, huh?

Here are the objectives for the assignment:

• Become familiar with the claims of several non-standard interventions commonly used with children who have neurodevelopmental disabilities.
  
• Learn what questions to ask in order to evaluate these claims.

The presentations are to address:

• What exactly is the claim made by this intervention? For whom is it intended?
  
• Is the claim consistent with current knowledge, i.e., does the rationale for its claimed effectiveness make sense in terms of already existing scientific knowledge?
  
• What is the evidence base for this intervention?
  
  • Have results been described in peer-reviewed journals, or only the lay press?
    
  • Are there any known risks for using this therapy?
    
  • Have alternative hypotheses been considered?
    
  • Are there position statements regarding this therapy, issued by any professional organizations? Does your professional organization have a position statement on it?
  
  
• Are there conflicts of interest for those evaluating the claims?
  
• Are personal attacks being made against those who question the claims?
  
• How widely used is the intervention?
  
• How much does it cost in time, energy, and money, for families?
  
• What is the attraction for families to try this therapy?

One of the presentations included a factoid claiming that up to 74% of families try alternative options for treating children with autism. Given how few truly evidence-based options there are, I'm actually surprised the number isn't higher -- I suppose it also depends on what you class as "alternative." In just the list above, we've done two: brushing and sensory integration. The brushing was a total bust... and I learned from the presentation that it really wasn't indicated for Joy in the first place, since it's aimed at sensory defensiveness and Joy is a sensory seeker, pretty much across the board. The sensory integration, however, is an ongoing part of our journey.

Anyway. Just as there are heirarchies in evidence quality, I'd say there's a hierarchy in the respectability of the interventions we saw presented. Sensory integration has wide acceptance in the profession of occupational therapy, and makes a certain amount of scientific sense, though the evidence base is not particularly strong (yet?). It was a interesting exercise for the two students, both OTs in training, who got assigned that topic, to examine it in terms of an "alternative" intervention.

The Wilbarger brushing protocol, which aims to alleviate sensory defensiveness, involves a pattern of stroking the person's body with a surgical brush every two hours, done with just the right pressure and just the right pattern. The OT student who presented on the brushing protocol has one of the protocol's inventors as a professor! Brushing relies on sensory integration for a theoretical background, but is a little further down the "makes sense" chain and is unfortunately susceptible to the allegation that if it didn't work, the practitioner (which ends up being parents) must not have done it right.

On the even-less-well-supported end were secretin, chelation, and facilitated communication (FC). FC is a method whereby a person who is unable to communicate verbally or type by themselves is assisted by a facilitator who helps support their hand as they point or type. The speech therapists presenting on FC were in the opposite boat as the OTs presenting on sensory integration: their profession is highly critical of FC and has formal statements cautioning about its use. There are multiple studies discrediting FC, apparently quite an easy discredit to achieve: you show an object to the person but not to the facilitator, and then see if the person can "tell" you what they saw. In far too many cases, they simply can't. Unless the facilitator sees it too.

Meanwhile, secretin (a hormone involved in digestion) was at one point claimed to ameliorate autism in up to 80% of patients. There are now upwards of 30 studies failing to show any benefits, though die-hard secretin proponents have criticisms of every such study.

Chelation is not just more weakly supported by science as an autism treatment, it has been implicated in at least one treatment death as well. It works for its intended purpose, which involves pulling heavy metals out of the body in cases of heavy metal poisoning. The hypothesis behind its use for autism is that autism is a heavy-metal poisoning issue, with the culprit being the ethyl-mercury found in thimerosal, formerly used as a preservative in childhood vaccines. However, this hypothesis has been powerfully discredited both by research and by the fact that thimerosal was removed from almost all childhood vaccines beginning in the early 2000s -- and the autism rate has not dropped. (Again, the proponents do not accept this discrediting, often viewing it through conspiracy-theory lenses.)

The full-inclusion topic was a little surprising to me, and I'm still not entirely clear on it. If I understood correctly, the "alternative" version of full inclusion argues that if you have properly-trained teachers, children with special needs ought to be able to be productively mainstreamed without a separate curriculum or extra teachers. Since I didn't get a clearer picture than that, I'm not going to expound further.

I was struck by the tone of the presentations, very matter-of-fact and respectful (and not in the sense of one of my favorite skeptical blogs, Respectful Insolence!) All of the presenters so far were practitioners in training, no family members yet. And practitioners have to walk the tightrope of not pushing families away, not alienating people who might otherwise hide the fact that they're trying alternatives -- which leaves the practitioner without important knowledge as they try to offer the family the best from their own fields.

I'm still finding that balance for myself. I guess my tendency is to be a little more Judge-y McJudgerson... it's frustrating to see people being (as I see it) taken in and wasting time & money & energy on things that may range from futile to dangerous, and then (sometimes) giving other families pressure and grief for choosing NOT to try.

I guess I'll have to make some choices, bloggy and otherwise. Next choice will be how to comport myself when I present on the 26th, with two other trainees, on the gluten-free / casein-free (GFCF) diet for autism. Also up that day: hippotherapy, hyperbaric oxygen therapy, and more! Stay tuned.

Hypothetically Speaking

I had the privilege of attending an event the other weekend that gave community members a chance to hear various experts on autism. We heard reports on ongoing research (the science experts). We heard about community resources (the information experts). And we heard about everyday life from a panel of personal experts: three parents of kids on the autism spectrum, and three people who live on the spectrum themselves.

The living-it-themselves experts had the opportunity to pick from a list of what questions they wanted to answer. I was especially interested in what the answers would be to the following questions that were listed in the program:

Do you think it would be a good thing if research found a cure for autism and Asperger's syndrome?
Would you want to be "cured"? Why or why not?

Unfortunately for my curiosity, these were not the questions that the panelists elected to address. I wonder whether the other questions were just more interesting to the panel, or whether there was some active avoidance of these particular questions.

You might say I've avoided these questions on Elvis Sightings myself, actually. Or at least I've chosen other material. The "cure question" is mighty important though -- for how people live their lives now, for how the money flows, for how autism-related policy is crafted, for research priorities, for what choices people may or may not have available in the future.

I'm reminded of my testimony back in 2007 before a state senate committee about autism insurance. The line that got media-quoted went like this: my daughter has epilepsy and autism, and "it's astonishing to us that of these two neurological conditions, one of them is thumbs up and one of them is thumbs down." [when it comes to insurance coverage -- fortunately we won! so that statement is no longer true!]

Now, consider the hypothetical question: "Would it be a good thing if research found a cure for epilepsy? Would you want Joy to be cured?"

Well, heck, yeah! Conditionally, of course -- we'd need to know about risks, and costs, lots of important details. But to the basic question, the answer is a pretty solid YES.

Replace "epilepsy" with "autism," and both the question and answer feel somewhat more tangled.

The rhetoric of curing autism has been deeply entangled with vaccine-autism fears, and a whole slew of non-standard / alternative medical treatments: some relatively benign, some downright scary. When people (parents) are desperate for a cure, and science doesn't have it, the door opens wide for uncontrolled experimentation. And quackery, alas. Very hard to sort out.

And then there are the voices from the autistic self-advocacy community and their allies, people who do not want neurological differences to be viewed as brokenness, but ask instead that the world welcome such differences as part of the beautiful diverse tapestry that makes up humankind. This view envisions a world where we pour the effort and funding that is currently flowing toward cure-chasing into supports and acceptance instead.

One aspect that makes the cure-question less straightforward is the increasing evidence for genetic factors in autism. It's not going to turn out to be anything simple, lots of bits of genes are implicated so far, and the geneticist who came to explain the lastest state-of-the-science to my LEND class last semester left my head spinning. But one consequence of pursuing the genetic angle boils down to what has happened in the case of Down Syndrome: once we could identify it in early pregnancy, people started choosing to end those pregnancies (at a rate of up to 90%). Might that be what a "cure" for autism ends up amounting to?

Another disturbing scenario was explored on a fictional level by Elizabeth Moon in her novel The Speed of Dark, in which the protagonist is on the autism spectrum and an experimental procedure/"cure" for autism figures prominently in the plot. (Fascinating book, by the way.) What exactly would a "cure" do to the people to whom it was administered? What would be the risks -- especially in the early stages of developing such a "cure"? What would be the pressures, and where would they come from? In the novel, the pressure is from an employer. But I could imagine the pressure coming from the funding mechanisms of the health care system, or the educational system, or social services. As in: this treatment is your opportunity to become "normal." This will be your chance to no longer be a burden on society. If you do not take this chance, for the good of society, how can we offer you any further supports or services?

Part of me would very much like to plant my flag proudly in the neurodiversity camp, and proclaim that I don't want a cure for Joy's autism.

But... hypothetically speaking... if we were suddenly offered the choice?

Depends on the conditions. I seriously just don't know.

I do find it interesting, though, that epilepsy and autism (so often co-morbid) elicit such different reactions to the "cure question." That somehow hypothetically desiring a cure for autism might mean I think my daughter is "broken" but desiring a cure for epilepsy just means I have her best medical interests at heart...

It's getting late and I'm beginning to ramble. Please come ramble with me in the comments. Ramble, not rumble, though, OK?

A Pap Smear for Jennifer?

The fall semester is drawing / barrelling to a close, but I have another LEND tidbit to share -- another video from the online social work class in developmental disabilities.

This lecture was presented by Dr. Bill Schwab, a family practitioner and medical faculty member who is highly involved in physician education around disability issues. His lecture, though perhaps a decade or more old, has stood the test of time and has been one of the best segments in the course so far (and the course is almost done!) The lecture topic was issues in health care screening and preventative medicine for adults with disabilities. You can see this hour-long lecture for yourself -- it's free! -- at http://www.iidd.wisc.edu/?q=node/40. (You only need to watch Units 1-3; Unit 4 is a repeat of Unit 3, for some reason.)

The lecture raised issues that I haven't really had to think about yet, with Joy only five years old and all. But the years will fly by...

Dr. Schwab's lecture highlighted the story of "Jennifer," a 30 year old woman with Down Syndrome who became a patient of his. When she started coming to him, she had never had a gynecological exam or pap smear, and was very clear that she did not want any such thing to happen. She was in generally good health and had never been sexually active as far as anyone knew or she was willing/able to report. Dr. Schwab's initial approach, in consultation with Jennifer and the staff who accompanied her, involved a gradual getting-acquainted over a number of appointments, and indeed over the course of two years she became comfortable coming to the office, weighing in, having him listen to her heart and take blood pressure. She was still, however, not willing to do so much as lie down on the exam table.

After two years, she had a staffing change. The new staff who came in with her were of the opinion that here two years had gone by, the pap test still hadn't happened, it was time to get with the program and see that it got done.

Dr. Schwab opened the discussion to the audience: What possible approaches (right or wrong) might a physician take in this situation? The audience started firing off suggestions:

• a more intensive patient-education approach
  
• maybe Jennifer would be more comfortable with a female doctor
  
• continue rapport-building
  
• simply defer the pap test and not push
  
• physical compulsion ("make" her do it)
  
• change in setting
  
• sedation (could be at various levels, up to general anesthesia)
  
• has she been molested in the past? / seek relevant history
  
• create a reward system
  
• modify the screening regimen

They could have gone on.

Dr. Schwab then made a series of very interesting points, some of which you'll just have to see the lecture to pick up... but here are a few of them.

What is the goal for population participation in this screening test among people with intellectual disabilities? Are you trying to get 100% participation... or are you trying to approach the same participation rate as you get with neurotypical (NT) folks? Because there are plenty of NT women who choose not to get that screen. They just never make an appointment for it, or simply decline when asked, and nobody comes to physically compel or sedate them...

Among the values the physician has to weigh are the concepts of personal autonomy versus substituted judgment. With children, NT or otherwise, parents get to make a lot of decisions (no child is going to choose a vaccination or even to go to the doctor at all...) At the other end of life, if dementia or other incompetency comes in to play, there are procedures in place such that people who know the patient and know of their previously-expressed healthcare wishes can make decisions on their behalf. So then you have the question: at what level is substituted judgment appropriate with developmentally-delayed or intellectually disabled adults, who may express preferences counter to prevailing medical advice?

Part of the conversation around any particular screen has to include the effectiveness of early detection (will it help?), the efficacy of the test (how many of the whatever-it-is does it actually catch?), and the question of what the next step would be based on results one way of another. Of course, this conversation applies to NT decision-making too! (Witness the recent change in breast-cancer screening recommendations. Dr. Schwab actually used breast-cancer as an example, and his comments back then are not out of line with the latest recommendations.)

Dr. Schwab made some important observations about going down the road of compelling a patient to be screened against her wishes. What, for example, is the consequence to a woman when she may have been taught protective behaviors all her life around her "private parts" and then she experiences a violation of that in the doctor's office? What message do we send to a person if we promote the idea that people with disabilities have rights and thoughts and opinions that matter -- but not in the doctor's office? What message do we send to the community?

He also said that his experience with partial sedation in such situations has been poor. People who come in under sedation often feel more confused and worried than they already were, feeling even less in control and more abused than they already did.

It's important to be aware that there are modified versions of exams that can be done if the physician is trained and willing. Dr. Schwab described in some detail a modified pelvic exam that involves no stirrups, more reassurance and eye contact (rather than hiding impersonally behind a drape), and no speculum until/unless it's deemed acceptable at the very end of the exam.

The lecture was a little bit cut-and-pasted from its original form, and what's posted right now doesn't actually answer the question of what really did happen with Jennifer (to the extent that she's a real person and not partially hypothetical?) Based on the rest of the content, though, I think I might have a pretty good guess as to what direction the doctor would have been advocating for her.

I think that "Jennifer" and Dr. Schwab's other patients are fortunate people.