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 Therapy, Aboriginal Edition

Didgeridoo-rapy.

I think maybe it organizes the central nervous system? Or something.


But only if you didgeri-do it right.

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.

Valentine

David Bacco chocolates from my beloved husband. (Inroads already made. I did share.)

And a lovely Valentine made by Miss Joy, facilitated by her awesome OT.

There are three little vertical crayon lines on the inside. I think they say:

I love you.

Autism: The New Draft Definition

There's a new proposed autism definition in town.

Here is the brand new draft/proposed definition of autism, as proposed for the upcoming Diagnostic and Statistical Manual, Version 5 (DSM-V), currently slated for publication in May 2013. The DSM in its most current version carries the official criteria for autism, the standards by which autism is to be diagnosed.

Proposed DSM-V criteria for Autism Spectrum Disorder (299.00)

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

   a. Marked deficits in nonverbal and verbal communication used for social interaction:

   b. Lack of social reciprocity;

   c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

   a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

   b. Excessive adherence to routines and ritualized patterns of behavior

   c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

This is a substantial change from the previous definition, in a number of ways. At a very basic level, it's a lot shorter! The previous/current definition, which I have often referred to as a "combination platter" diagnosis, began like this:

"A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):"

I'm not going to quote the whole DSM-IV definition here, because it's pretty long. Roy Richard Grinker, author of Unstrange Minds (and originator of the term Elvis Sightings as related to autism, woo hoo!) has an excellent page on his web site listing all of the past DSM criteria. If you scroll to the bottom, you'll see the one from the DSM-IV, which will continue to be the official diagnostic criteria until the DSM-V actually comes out.

Another major change in the new draft is that it no longer recognizes separate categories for Asperger's and for PDD-NOS. I think this is the aspect of the change that will generate the most discussion, due to possible implications for identity (how people think of themselves) and services (in situations where currently a diagnosis of "autism" will get you services but a diagnosis of PDD-NOS won't.) Grinker has an op-ed in Tuesday's New York Times speaking to the identity question, and arguing on behalf of the greater clinical accuracy of folding the formerly-separate categories into the one spectrum.

Another new thing is that the DSM-IV definition specifies onset before age 3; the new draft specifies more generally that "symptoms must be present in early childhood."

One more aspect that leaps out at me, and I haven't seen discussed yet: I've always found it fascinating that sensory issues are so much a part of Joy's life, and so present in the way I hear both parents and people on the spectrum themselves talk about autism. But sensory issues were not so much as mentioned in the DSM-IV definition, and I've written before of Agency 1, the local intensive-services provider where we were told that they didn't "believe" in sensory integration.

Looky there, folks... it's right there in the new draft, item 2 part a!

I'm looking forward to hearing how the new draft will be dissected, analyzed, possibly changed? There will surely be a whole raft of consequences, both intended and unintended. One way or another, though, the DSM-V is coming and bringing a new framework for autism with it.

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?

Stim-Sense

This post is a cross-pollination between Barbara at TherExtras and JoyMama at Elvis Sightings –- co-authored by two bloggers who have never met in person, but hope one day they will.

When we move ourselves our bodies are wired to feel that movement. We humans have beautifully intricate wiring (nerves) connecting feeling (sensory) with movement (motor).

Some movement feels good. And with that basic understanding, seeing children who repetitively moved in (sometimes unusual) ways, charter psychologists called this behavior self-stimulation. Early in Barbara’s career, therapists commonly shortened this to self-stim. Currently, parents like JoyMama and others who encounter or engage in self-stim have learned to call these behaviors ‘stimming’.

Stimming is part of the DSM definition of autism, though the definition does not use the word, perhaps because it is not technically-defined, nor even in the dictionary. "Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)." However, one can receive an autism diagnosis without meeting this particular criterion -- and stimming is associated with other conditions as well. Not everyone who stims has autism.

Repetitive movement is important for learning -- a mantra of Barbara’s if you read her blog regularly. But stimming does not fit the "important for learning" category in the same way, and can actually impede learning. Most educational/therapeutic references to stimming are made with negative overtones.

Stimming is sometimes described in words like these: unproductive, obsessive, obstructive, annoying, consuming. These perceptions of stimming are common among people who are observing it, such as parents, educators, bystanders.

In the autism community, some think that since stimming is part of the autism definition, reducing the stimming amounts to a reduction in the autism. Applied Behavior Analysis (ABA), an educational technique intended to reduce autistic behavior, is associated with that approach.

But another list of descriptors implies a different perspective on stimming: pleasurable, centering, meditative, regulating, communing. You are more likely to hear these from people who engage in stimming themselves.

Within this second perspective stimming is viewed as similar to what neurotypical individuals do to calm or entertain themselves: thumb-twiddling, pencil-tapping, leg-jiggling, even knitting. Stimming as regulating activity is seen as beneficial for helping people "keep it together," allowing them to block out negative or frightening input and keep from feeling overwhelmed.

One particularly thought-provoking insider-view comes from Amanda Baggs, an autistic self-advocate. In the first few minutes of the video "In My Language" below, she shares some of her "stereotyped and repetitive motor mannerisms," as the DSM would say. The latter part of the video gives Amanda's own translation of the meaning of her movements, using a voice synthesizer (Amanda's means of speech).



Families of children with autism struggle to find a balance between stimming and education. How does stimming interface or interfere with learning?

Does the behavior stand in the way of beneficial play? Learning is the work of childhood. And stimming can indeed impede learning when it consumes the play-time and energy, or turns educational objects into stim-objects.

JoyMama and Barbara offer the following ideas... in two categories. (This is a brief listing. To find out more, ask the professionals who work with your child.)

Reducing or preventing stimming

1. regular (daily is best) ‘heavy work’ or strenuous activity/exercise
   
2. consultation with a psychiatrist to rule-out or treat co-morbid mental illness
   
3. consultation with a neurologist to rule-out or treat co-morbid seizures
   
4. structured lifestyle
   
5. discovering and avoiding an individual's triggers for stimming (for example, Joy stims on ribbons and strings. Her family sometimes "disappears" such objects when the focus needs to be elsewhere).

Using stimming to benefit the person or enhance their life

1. stimming as reward-breaks between learning activities
   
2. allowing some stim that can be done simultaneously with learning activity - maybe chewing a tube can help your child focus on a book or drawing
   
3. use stimming during learning-play -- place a stimmy-toy into a tunnel to crawl & retrieve, take turns with tossing/catching a stimmy-object
   
4. enter into the stimming-world together -- letting gravel run between your fingers and toes feels good!

Therapists have a saying that if you take away one stimming preference, another will develop in its place. Complete elimination of a stimming habit might be unrealistic, and not even desirable, depending on what function the stimming serves. Stimming-related goals, like all goals, are best seen in the context of the whole child.

Re-evaluate on a regular basis whether you are satisfied with the progress of your child or the effectiveness of the therapeutic and educational methods being used.

Update September 2010: There's an excellent insider-perspective post at Reports from a Resident Alien about stimming and its purposes and the sensory channels it affects.

Would you share approaches you have used to prevent or incorporate stimming in the life of your child?

First Day of School

It was a beautiful winter day, temperatures just below freezing, a couple of inches of new snow making everything look very white again, just a few lazy flakes floating down.

I got Joy all dressed up in coat, snowpants, boots, L-Bow mittens... and backpack! Joy and I showed up at 1pm at the back door of the school where the kindergarteners enter. Her occupational therapist was waiting for us, to take us just a few feet into the hall to Joy's new locker. It was all prepped with a laminated name-plate just for her, decorated with a dragonfly that matches the one on her new purple backpack.

Have I mentioned yet that I love Joy's itinerant school-district team?

Getting all those wraps off and into the locker is quite a task, but since there's no crush of kiddos in the hall at 1pm, Joy has plenty of time to work on it.


Next step was a hand-in-hand trek through the halls, up and down stairs (deliberately the long way around for practice' sake) to the OT/PT room. Which has a swing hanging from a sturdy hook in the ceiling, oh bliss, oh Joy! First she went swinging in a stretchy-sling-swing that enveloped her entire body -- something she hasn't had access to for several years. It felt so good, she kept signing for more. Eventually we lured her out with a "first-then" statement and the opportunity to play with a little mirror while the OT changed the swing to a platform.


I had intended to head home after I got Joy settled, but it was such fun seeing how this all worked that I ended up staying the whole time.

After a whole lot of swinging and a little bit of table work, it was time to switch to the next staffer, Joy's special-educator, who took her to meet the gym teacher and then into the gym. Which was totally empty, so we could shut all the doors and run and play at will. Much delight!

The gym time ended with the need for a diaper change, so I got to see the facilities for that too. Fortunately there's another girl in a class on the kindergarten end of the building who already has a changing room set up in the accessible stall of the girls' room, so no new arrangements need be made for Joy.

During the diaper change I got to go talk to Rose's teacher while their class was out to recess, lining up for next Tuesday when Rose is person-of-the-week and I'll come to visit. I don't quite know what we'll do but now we know when and how long we'll do it... and that the time will finish off with a visit from Joy at the end of her "school day." It will be a splendid opportunity to make introductions, have more kids recognize Joy and be able to look out for her and greet her.

After the conversation, I joined Joy and her teacher in a nice windowed room at the back of one of the kindergarten classrooms. I was expecting it would be a place for one-on-one, but was delighted to see that the kindergarteners were having a free-choice time and that three other little girls had chosen to play back there with the new girl and her staffer! They were so sweet and matter-of-fact and pleased to take turns with Joy stacking pegs, and bring her play-food to pretend-eat, and pop bubbles with her, and sing "Wheels on the Bus." It was pretty obvious that these were kids who were used to differences, and were eager to tout their own diversity as well... one of the three made sure to let us know that "I'm Korean -- I mean, I'm half Korean." The whole encounter was just so sweet and accepting!

Then we got wraps back on, and went out to play on the playground for the remaining half hour before the end of the school day. During that time, two gym classes on snowshoes came and went (don't you wish YOUR school taught snow-shoeing for winter gym?) The gym teacher called out to Joy as they went past, and so did a couple of Rose's friends.

Joy was pretty tired out, and a little out of sorts at dinner, but managed to turn on at least some energy for her barista-dude in the evening.

What a spectacular first day of school. We are so blessed.

Hitting the Bottle

This post is in the interest of parental self-protection.

If Joy ever comes to visit you, and catches sight of a bottle similar to this in your home...


... and starts excitedly making a hand-sign that looks like this:


THIS is what she actually gets to have, when we celebrate a special occasion. Like last night for my birthday, when she saw the bottle & stem-glasses come out (she gets an open plastic cup now) and was "more"-signing so enthusiastically I thought she was gonna hyperventilate.



Kristian Regale Apple-Lingonberry fizzy juice.

Please make a note of it. Thank you.