3/31/2010

Age of Autism Proves It Has a Reading Comprehension Problem

Anne Dachel and Teresa Conrick are downright confused over there at AoA. That's okay, as the folks commenting aren't any better off.


They're both busy going a wee-bit off the deep end on this clinical trial by Curemark.


In a press release regarding Curemark, autism, and the revolutionary enzyme that's going to cure autism (get it-- curemark), it is revealed that: "Dr. Fallons paper, entitled, The Role of a Dearth of Amino Acids in the Pathophysiology of Autism details the groundbreaking discoveries regarding autism and its possible origins. This research is the focus of Curemarks plans for entering into clinical trials."


Okay, so what are these groundbreaking discoveries? Well, stand back and be prepared to be amazed: "Dr. Joan Fallon, the company's founder and CEO, observed that many autistics show a strong preference for foods high in carbohydrates and low in protein."  Okay, my husband is right that this is my new favorite saying, but holy crap on a cracker, folks! It's got all the earmarks of the woo the AoAers love to hear. It's just confusing the hell out of them that there's actually a clinical trial registered with the government. Somehow, they've twisted this to be a federal endorsement, and they can't believe a study by Wakefield is cited as background literature. Guys, the government didn't approve this study, it's a registry, not an endorsement, and it's Curemark's scientist who's provided Wakefield. This should have been your signal that this was one of your woo-posse, but no, you've confused something actually getting studied with being big pharma. Instead it's a start up company, like Boyd Haley's, only Curemark is taking it a step further and actually examining whether it works.


Business Week covers Curemark in an article back in January: "One of the most promising treatments in this category is a drug called CM-AT made by a startup called Curemark. Dr. Joan Fallon, the company's founder and CEO, observed that many autistics show a strong preference for foods high in carbohydrates and low in protein. A diagnostic test revealed that some autistic children lack enzymes that digest protein. As a result, these children produce fewer of the essential amino acids that are the building blocks for brain development and neuroreception. Fallon believes this deficiency is linked to the most severe symptoms of autism, and she says an early observational study of CM-AT, an orally ingested powder that delivers protein-digesting protease, showed "significant improvements." Curemark is enrolling patients in phase III clinical trials at 10 to 12 sites—the largest autism trial to date."   Hah, no scientific evidence offered as to why this is a promising treatment and Business Week hardly connotes scientifically valid.


And, in a press release, Curemark announced that it had been granted FDA fast track and then explained : "Fast Track is a process designed to facilitate the development and expedite the review of drugs to treat serious diseases and those that fill an unmet medical need, providing a therapy where none exists or are potentially superior to existing therapy, according to the FDA Web site.  Fast Track designation provides for early and frequent communication between the FDA and the drug company to resolve questions and issues quickly, obtaining an expedited review and faster access by patients."


Does this prove that FDA and Big Pharma are in cahoots with each other or that the overwhelming majority of researchers are saying, oops it's the guts? No. It means a "doctor" has decided to branch out into a niche field, like Haley, the Geiers, Wakefield and Krigsman did. And the rich, rich irony is that the AoAers missed it and have decided it's a big pharma gambit and validation of all their conspiracy theories, because of course it's all about the money to be made.


Again, holy crap on a cracker (Big Bang Theory fans will recognize this). Guys, how did you miss Dr Fallon's 2006 publication to the esteemed (sarcasm) journal Medical Hypotheses: "Could one of the most widely prescribed antibiotics amoxicillin/clavulanate "augmentin" be a risk factor for autism?" This is her one and ONLY publication citing with pubmed.


This is yet another case of media covering a story without assessing its legitimacy, and the AoAers picking up on it and running with it without taking the cursory amount of time necessary to assess the legitimacy of the story. 


I mean, if they'd done any digging, they'd have found this:


"Dr. Joan Fallon, member of the ICA Pediatrics Council Board of Directors and Immediate Past Council Chair was recognized by the New York State Senate with a citation for her research demonstrating that children with ADD, ADHD and autism have a similar biological defect and that pancreatic enzyme therapy is efficacious in the treatment of these children. Dr. Fallon has been awarded a patent for her enzyme therapy treatment by the US Patent and Trademark Office. The presentation was made by NY State Senator Nicholas Spano. In his proclamation Sen. Spano commended Dr. Fallon for her compassion and care and for sharing with others her knowledge and expertise “as well as her never ending commitment to the quality of health care.” Dr. Fallon’s research as well as her care of children with chiropractic adjustments were also cited in a debate in the Canadian Parliament as something that should be looked at when considering treatment options for children with autism in Canada. Dr. Fallon is a full-time practitioner in New York."


And this:


"Dr. Fallon is a Fellow of the International Council on Chiropractic Pediatrics.She is a former Assistant Professor at Yeshiva University in New York City, and the author of numerous professional papers and texts.She is the coordinator of a post-graduate program in pediatrics, and on the faculty of numerous Colleges and Universities.She has lectured extensively around the world on the subject of children with problems, and she has traveled numerous times to Romania to work with the children of the orphanages.She is the director of a multidisciplinary center in Westchester County, New York, that specifically works with children with problems, and prides herself on outreach and networking with other professionals to bring the best possible care to all children."


A little more, you ask? "A 1983 graduate of Palmer College, Dr. Fallon has a B.S. in biology and obtained her diplomate international council of chiropractic pediatrics (DICCP) through the ICA's program at Palmer.
She is an assistant professor in the natural sciences and mathematics department of Yeshiva University in New York, is on the postgraduate faculty at Palmer West, and is vice chair of the ICA Council on Pediatrics." --1996 Dynamic Chiropractor
I'm sorry, could someone please explain how a chiropractor is qualified to deal with pancreatic enzymes, let alone autism?


Yeah, AoA, she's one of yours, so will you be backpeddling and claiming her?


Anne Dachel (the media editor) writes: "Are we to simply accept that the medical/scientific community suddenly recognizes that autism is related to GI disorders, despite having previously denied a link?" Umm, pretty sure the medical and scientific community is going to go with Buie's studies, and not with some chiropractor who has patented an enzyme and is doing a clinical trial with what they hope will be 170 kids. That's not enough for statistical validity, for one, and this won't be a prescription drug, either, but will allow the company to claim it actually does something.


Even better is when Anne writes that Business Week covered it because of all the money to be had: "I'm sure BusinessWeek covered this because of the great profit potential for any drug that could be used to treat hundreds of thousands of American children." I'm sorry, but I really do have to laugh.


Now, tell me, if you actually go take a gander at the comments and the two articles over there at AoA, if this isn't proof that they are so far into their conspiracy theories that they read into stuff what they want to?



The Weaving Together of a Community: A linkapalooza and Kickass Kumbaya

I had planned a post called "The Great Semantic Divide" today based on an exchange going on with Doherty over at Autisable on my post which they retitled Miscommunication and the Unification of the Autism Community, but it will wait, as I have much lovelier, more positive things to discuss. It's not like the Doherties of the world are going anywhere. :-)

Yesterday, thanks to Liz Ditz who tweeted that Smockity had apologized for the bruhaha she stirred in the autism community, a new set of posts have begun by bloggers. I posted here and at RFID for the ladies of RFID, noting the apology and accepting it, hoping that we can all move forward now towards positive action.

Stork Dok wrote a lovely, moving piece acknowledging and accepting Smockity's apology  as did Life as the Mother of Four. My friend Katie wrote a deeply compassionate piece at her blog, and in conjunction with her
original post  regarding the situation and her additional post on further notes on compassion, readers can gain the opportunity to reflect on the need to learn compassion and empathy. We so often forget that people have lots of things going on in their lives and in their heads that we can have no way of knowing. And some researchers like to say that autistics lack a theory of mind! Ummm, we all know, I am sure, far more normals who show a complete narcissism as they barrel their way through this world, exhibiting no awareness of their fellow man.

Others have followed suit, and if we are to be fair, we have an obligation to note the apology, and perhaps go even further, send an email to Smockity, as Jenny Alice did. Some have commented that perhaps there was still a ways to go, as Marcy did, and I can agree that no disgrace was brought on Christ at all (as Smockity writes); Christ had nothing to do with the post or the reactions. That was in fact part of the point.

In response to Emily's stirring post at A Life Less Ordinary, in which she asked, "People need to know what autism really is, as autistic people live it. Mom-NOS did it at the grassroots with her classroom presentation about autism and her son. We did it, to good immediate effect if not long-lasting outcomes. How do we make that happen on a broader scale, now that we've taken a small baby step with Smockity?,"  I responded: 


You raise such important points. I'm not sure how we do it all, but I know it starts with the connections we make with each other, the positive support we provide, the real world reaching out we do in our local communities and a commitment to continue to fight this battle each and everyday for our children, for ourselves, and for all those who face rejection and isolation because of their differences and disabilities. We, in short, engage in kickass kumbaya, never losing sight of the long term goals of acceptance, appreciation, and accommodation.


...

But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
--Robert Frost

We've all of us many miles to go. For many of us, our lives will be spent caring for, fighting for, advocating for our child  (or children) who will not achieve full autonomy, who will need care and assistance long past the time we put aside our burdens and move onto what we hope or believe awaits us in the next life (I know for Kathleen and I, we're hoping for lots and lots of coffee and chatting, but Thelma and Louise insist it's going to be filled with Wild Turkey, Boone's Farm, Baretta and MacGyver). This is not a journey we'll be stepping off of, and it's always a blessing and a celebration as we move along this path when we find ourselves in fine company, when we meet new friends to accompany us, support us and help us fight the necessary battles.

We need to work at deciding which battles are necessary ones and which only serve to divert our attention from the journey we are on.  And we always need to hold onto that compassion which allows us to feel for those we decide are necessary to be responded to, pushed back against, and challenged. And when we are able to reach someone, when we hear those words of apology, we must, must have the grace to accept it, to welcome it, and to welcome them.

Acceptance.
Appreciation.
Accommodation.

And a wee spot of kickass kumbaya as we go (or the mighty purse as Thelma and Louise, would have).

3/30/2010

The Ladies of RFID Note That Smockity Apologizes

If you somehow managed to miss all the hullabaloo last week, well, googling or looking through the posts compiled at Liz's will get you caught up. Smockity apologized today. Good enough for me.

Folks who reacted by sending ugly, threatening emails to her should maybe take a step back, look at their actions, and consider doing the same. It's okay to get mad; it's okay to express that anger and that pain, but there are boundaries that are not acceptable to cross, and threatening another person is one of them. I've been on the receiving end of threats (thankfully, not many), and it's no fun.

When someone can own their mistakes and make amends, it behooves us to get it right, accept the apology and move on. I think I can speak for Thelma and Louise and Kathleen and say that we wish Smockity well, and we hope the next time she runs across a child and caregiver interaction like that, she'll show the compassion, patience, and love that Christ himself would have bestowed on them.

As World Autism Awareness Day Approaches, Age of Autism Shows Us They Don't Get It


They are the Nazis. Sitting back and watching generations of children be harmed and killed from poison in vaccines. Doing nothing, and actually trying to make it worse. They might as well pick 1 out of every 100 kids and gas them. That is more humane. The idiot who made this clip would have made better use of his time jerking off --b/c that is the equivalent of the message they are sending out.  --AoA commenter

April 2, World Autism Awareness Day, will soon be here, and bloggers in the autism community are writing posts relating to the day, to the month ahead on raising awareness, of the work that remains to be done in society at large to create an environment of acceptance, appreciation, and accommodation for those with autism.

Over at Age of Autism, they're bent out of shape (when are they not?) over a parody of a scene from a movie involving Hitler having a huge hissy fit; it's been parodied many times for many different subjects. This time, though, the anti-vax movement-- Handley et al.-- are being parodied. Ah well. It is funny, as all the parodies tend to be. It is a huge rant that Hitler is in the middle of, with all sorts of people standing around watching him with worried looks on their faces. I've already said no one should call these parents Nazis, and I honestly didn't read it as such, just as I didn't look at any of the other parodies of other groups as equating them to Nazis. But the Nazi gambit isn't new to AoA; it's one they regularly dust off.

It's interesting that AoA is so sensitive about this, so sensitive in fact that they feel the need to immediately post a picture on an emaciated young man on their blog (thanks to a friend for pointing out the inherent irony there).  I guess the folks over at AoA think serving up a baby at Thanksgiving is hilarious and acceptable, as is writing that Nancy Snyderman was under the table (since she wasn't pictured) giving Offit fellatio.

Was the video in poor taste? I'll let you be the judge of it, but considering the rhetoric over at AoA from its editors and commenters, the question of whether they engage in foaming-at-the-mouth rages over things seems moot. All one has to do is read the comment at the top to realize that these folks aren't operating in objective reality. All in one day, they managed to let on comments that called Ari and individuals on the spectrum who advocate for themselves sociopaths, and nastiness like the above.

Now, if AoA were an unmoderated blog where anything and everything got on and stayed on, I'd have less of a quibble, but this is a censored blog where the editors examine the comments and intentionally choose some and reject others. Hmmmmm. I find that the most interesting thing of all.

Oh, and anyone who thinks it would have been more humane to kill children than have autistic children needs some serious help.

3/29/2010

Umm, but Ari's not against treatment, and neither are the overwhelming majority of people in the "neurodiverse movement"

Stagliano attempts to recover from missteps in her Ne'eman post today: "I think some of you have misunderstood me. I apologize. Many of our kids have high functioning autism - we aren't separating them out at all! Nor Asperger's - which many of our kids have as well and we know can be profoundly debilitating and require treatment. I'm only referring to folks are vocally claim to be against treatment - not all our kids. Thanks. KIM"

Stagliano needs to go back and read her stuff, because she sure as all get out is arguing that Ne'eman isn't qualified to speak out for those who are more impaired. She sure as heck thinks that Asperger's and autism aren't the same thing, either. I like the retraction, though, because before this she's insisted that all their children are profoundly disabled.

You know what, you can be "high functioning" and still be profoundly impaired and incapable of living on your own. If you don't think us non-woo parents aren't fighting like hell to change that for our children, that we won't move heaven and earth to help our children achieve that if at all possible, then you've gone way too far down that woo-hole and have self-justified yourself right out of this universe. Heck, maybe you're over there with Lanza in one of his multiverses where folks don't die.

The problem with strawmen is that once they're burned, you're left standing behind nothing, looking like the hapless guy behind the great and powerful Oz.

Stagliano and others like to assert strongly, shrilly, repeatedly that folks who don't buy into their special brand of woo are against helping our kids do better, achieve their potential. Sure, it would make me feel better, too, as I went down the woo-hole to never never land to think the folks standing up there refusing to follow me down were all about doing nothing for our kids. We know that's not the case, though. We want our children to be successful, happy, and live independent lives, so we work tirelessly to help them do better, and we work just as hard to help society see them as valuable, worthwhile people just as they are. And we do it without desperate forays into woo. See, we don't need to recover our kids; we don't think they were stolen from us. We aren't going bonkers over some vainglorious attempt at a magic pill or at casting ourselves as victims and martyrs who have been lied to and cheated of our children by big pharma.

Look, the folks at AoA are going to have to make a choice at some point, especially as their children grow up and can look back at the garbage that their parents put out there, do they keep going after the woo, do they keep up with the conspiracy theories or do they start viewing their actions within the context of having to answer to their children for what they have done.

In the end, we fight for our children so that they will have better lives, and we move forward with an eye on the future and how we and they will judge our past actions. I mean, if it's about the kids, if it's about autistic people and helping make sure they are appreciated, accepted, and accommodated, you want to focus on things that make that happen.

Show me how AoA does that.

One Person Is Not the Lightning Rod That AoA and Others Make Him Out to Be: Ari Ne'eman deserves his vote (and some unrelated Nazi stuff)

Last week, I posted a blog called Ari Ne'eman Doesn't Divide the Autism Community (and added They Do That Themselves). AoA had run a letter to Obama kvetching that Ari isn't worthy. I recognize from the heated comments that last week's blogpost caused that there are many in the community who do view Ari as a lightning rod. He's not singlehandedly caused this division, although he may well represent the significant problems that people have communicating with each other.


AoA's Kim Stagliano has run a new post today on Ari's nomination being put on hold. Once again, instead of dealing with what people actually have written or said, Stagliano creates a giant strawman to set on fire. She writes: "We bristle when we're told that our children do not deserve treatments and research that could move them "up" the spectrum." Yeah, here's the problem, that's bunk, and she full well knows it is. 


And if we need any further evidence that AoA ain't about the children or the autism, you only need to look at what they posted after her piece: Heckenlively's martyr-me piece on being compared to Nazis, followed by another piece with a photo of an emaciated autistic young man in England, entitled "When You Call Us Nazis, Remember This Boy." 


I don't advocate calling the parents at Age of Autism Nazis, although they are the ones who keep bringing up Hitler and Nazis. A lot. Don't make me go through the archives and prove it because I can and I do believe I have before.


You're not Nazis. You're parents who love their children desperately and lack critical thinking skills. You're also martyrs to your cause and want lots and lots of attention.


Did you ever notice that almost none of the posts over there are about the kids themselves? About what they go through? About their accomplishments, their struggles? About positive coping methods? About helping others out? About reporting on the travesties that occur without then using it as a bully pulpit to scream it's the vaccines or teh evil chemicals? Or that people are mean to them and how autism kills and if it doesn't kill the person, then the autistic person will kill the parent?


Ari deserves his vote, whether you agree with him or not. Whether you think he should serve or not. It's chicken-shitted to get a senator to put an anonymous hold on his vote. And it's crap to say you're all for self-advocacy and then cry that the neurodiversity movement paints you as anti-autism when you're all for shutting Ari Ne'eman up.


Here is a repost of last week's blog on AoA's letter to Obama:


Age of Autism has posted a letter to Obama complaining that Ari Ne'eman's appointment to the National Council on Disability. There is no identified author to the piece.

As on many things relating to autism, Age of Autism has it wrong, yet again. This doesn't come as a great surprise to many, I'm sure. Ari Ne'eman doesn't divide the autistic community. The outcry generated against him is but a symptom of the divide between parents of autistic individuals on the internet (probably not a representative sample) who on the one hand think their child's autism, recovery/cure or not, is about themselves, the parents, and those parents who think their child's autism is primarily about the child: the child's needs come first.

I suspect that a great many parents of autistic individuals don't have much interest in what's going on in the internet world because their real world experiences leave them too busy to get involved, or that what free time they do have they find better spent elsewhere. In other words, I think the internet activism represents the personal interests and proclivities of the individuals online and skews the sample. In other words, I refuse to use the availability heuristic and draw from the internet pool and believe it represents the wider world of autism. We don't really know what most parents think of Ne'eman's appointment, and I'd bet you that most are completely unaware of it.

Ne'eman, as someone with a neurological difference, who navigates the disability world from the inside out, is well-suited to serve on the council. He is erudite and well versed in the autism world. In 2008, he was  coauthor, along with Alicia Broderick of the article "Autism as metaphor: narrative and counter-narrative," which was published in the International Journal of Inclusive Education.


Broderick and Ne'eman write:


The autism spectrum in its many variations is an ‘invisible disability’ and so we have to work to be able to explain the myriad ways in which it is experienced to those who are not autistic or who are not intimately familiar with someone who is. (p. 473)

It is ironic in some ways that parents and self-advocates should be so divided, as that they do share many goals for public policy and social change. It is the rhetoric of the autism community — as well as its upside down perception of the self-advocate narrative as secondary to the parent one — that divide the two groups. (p. 473)


By improving public education and funding for transition and adult supports, we can reduce the perceived and actual difficulties imposed upon families. (p. 473)

Ne'eman is not the cause of the divide, but he clearly represents all that the AoA parents stand against: an articulate and capable spokesperson for those with disabilities, one who stands for "improving public education and funding for transition and adult supports."

The powers that be over at AoA write: "It is an insult to our community and to the people of this nation who will bear the enormous costs of millions of children and adults with autism that a 22-year-old student has been nominated to this position."

If by "our community" they mean the anti-vaxxing militant biomedders who wish to recover their children who are empty suitcases to them, well, then yes, I suppose he is an insult to them. Ari is far more than a student, and he's certainly proven a depth to him that I am sure makes AoA's token autism self-advocate squirm. The eloquence and intellectual curiosity that Ne'eman displays is extremely mature and robust. He's worked actively to speak out for autistic individuals, to support their own advocacy. No, he's not perfect, we none of us are, and I'm not suggesting hero worship. I am stating that AoA's contention that Ari Ne'eman is unqualified is an inaccurate assessment based on a collective temper tantrum because nobody in power or in a position of informed knowledge will listen to them and take them seriously.

AoA writes, "Mr. Ne'eman opposes the mission of the country's leading autism organization, Autism Speaks, which supports efforts to prevent and cure autism." So do I, but more because they fund themselves before funding research and they offer little real help to the community from which they take so very, very much. I don't support Autism Speaks because AS has proven it isn't about autistics speaking.

For AoA to write "Mr. Ne'eman's views are extremist" is hilarious in the extreme.  AoA is a fringe element whose views are beyond extreme.

AoA writes: "Rhetoric and denial will not end the suffering."

Thankfully, we agree on something, but not in the way they intend. AoA's empty rhetoric and denial of the science showing no link between autism and vaccines and their need to pursue woo beyond all measure of rationality only propagates the suffering of autistic individuals. Seeing your children and individuals with autism as stolen away and in need of recovery furthers suffering. Putting your children through crackpot treatments increases suffering.

Sending parents of newly diagnosed children down the woo hole behind you furthers the suffering of children and parents alike.

Parents who want to recover their children at all any cost, who view them as stolen, soulless, and damaged have no business anywhere near the Council on Disability. Disabled individuals do. They can offer insight, empathy and understanding that the AoA parents will never be able to offer.
 ....


For those who are on the spectrum who oppose Ari's nomination, I understand and appreciate your perspective. He deserves his vote.


Ari Ne'eman does not divide the autism community. We were already divided before he came along. He doesn't even represent the sum of all our divisions. 


In the end, Ari Ne'eman and his place on the council isn't what this is all about. What it is about is where you stand in the community. I don't think we should be united behind one individual as if he were the messiah set to solve all things. 


We have parents who scream that the government and big pharma is out to poison an entire generation. We have parents who play the martyr to the hilt. Who make their child's autism about the parent and not about the child.


We have parents who want to understand and support their children and who think that the focus belongs on the individuals themselves, their needs, their issues, and helping them to achieve their potential. We think that positive support for families is necessary and that AoA, GenRes, TACA, and Autism Speaks are a lot of things, but they aren't about positive support or about the individuals dealing with autism and a society at large who is being propagandized to believe they are damaged goods who need to be recovered at all costs.


Age of Autism and its editors are sanctimonious and self-righteous, martyrs in search of a cause. And they'll pull whatever overly dramatic stunts they have to in order to get your sympathy. Because that's what it's about in the end: poor me. Look at what they suffer. It's not about the autistic individual or that picture of that young man wouldn't be up there right now. 

3/28/2010

A K and K Duet: Now What?

Kim (KWombles):
Parents across the autism community have rallied around to share their hurt and their disappointment over a blogger mocking a little girl who appeared to have autism. We've shared our own stories of those looks, our fears for our children, our need to work harder to help the public at large (and at times our own familes) to understand, accept, and appreciate our children.

But what do we do now? Do we go on inundating a blogger who has turned her back to us, told us our feelings and our children's feelings don't matter since she was only being funny? Or do we harness this to tell our own stories, both those that hurt, that cut to the bone, and those that warm our souls and give us hope? Do we share what our children really need and how those we encounter can help provide it?

Do we move beyond the internet community and blogging, begin writing letters to our newspaper editors, talking to parents when we pick up our kids at school, talking to our children's classes? What do we do if we've done that and are still met with rejection for our children? How do we make the world change? What's the best way to get things to change for the better?

Kathleen (have you read her excellent blog? says Kim):

It is what we do now that interests me the most.  It is easy to take an incident like this personally, easy to write a blog post defending your child, your experience. It is easy when we relate it to ourselves.  But what of the many other issues that surround disability? That surround basic human rights of everyone.  We need to take stock and band together on those issues as well.  The aforementioned blogger is just one person. Sadly, I believe that her behavior is representative of many. So where do we begin?  And more importantly-how?
  There are just too many groups. We are scattered all over the internet. There are many of us that have limited time and or access to the internet. So where does one look? There are groups for acceptance, for education, for inclusion...groups to help individuals with legal issues, health issues, issues in general.  All are important. So I am asking anyone who is part of such a group to please post your information on our forum.  The fact that so many bloggers could come together to counter that outrageous post gives me great hope. I think that there is much we can do to change perceptions- working together towards inclusion and acceptance. What are your ideas?  

Kim: 

Kathleen's right; there are more places out there on the interwebz than we can possibly all look at or be aware of. We need to work to create a network of our blogs and forums and various sites so that if you find one of us, you can find all of us who are advocating for acceptance, accommodation, and assistance for those on the spectrum (and with other neurological and physical differences and impairments) and for their families and friends.

We made a powerful noise this past week, and we should work to build on it so that together we can effect real boots-on-the-ground change that makes our children's and our lives more rich, more rewarding, more supported.

So, if your blogroll is a little thin, add to it as you run across good blogs. If you come across a really good resource, add it to Infinite Diversity. Check out Autism Awareness and Acceptance if you want to share a really good blog post or webpage and make notes on it.

Tell your friends in your local communities about online resources and networking possibilities through friending autistic individuals and family members on facebook. Some of our best support and our best ideas come through twitter and facebook, believe it or not, and not through the the groups, but through reaching out and friending people.

Autism Awareness shouldn't be once a month. And for all of us in the community, either on the spectrum, teetering at its edge or loving someone on it, it is interwoven into the fabric of our lives. And reaching out to others to show our support, to provide assistance, to offer compassion and acceptance ought to be like breathing.

Another Reason Why Age of Autism Isn't the Place to go for Your Autism Information

"However, with so many parents,  physicians and researchers united in their opinions  as to what  is contributing to  this condition, as well as which strategies are bringing about improvements in these children, we now have a pool of wisdom, good science and common sense from which to draw the following safe, effective and practical recommendations for preventing autism…….. and we can do it now!"-- McDonnell on AoA

Opinions are irrelevant. I don't want my physician's opinion unless it's backed by science. There's a reason evidence matters. Our opinions are swayed by our confirmational biases, affect and availability heuristics. It is so not the way to go.

I don't care how united people are in their opinions. Seriously. Mercola has over 60 thousands fans who are united in their opinions that he's awesome. Doesn't make what he's selling safe or legitimate, though.

Parents need sound evidence, not hyperbole.

McDonnell doesn't provide any evidence for preventing autism, but if you were reading it carefully, she wasn't promising folks would be able to avoid it: "Of course there are no guarantees."   No, really? You can't guarantee a safe and uncomplicated pregnancy, one of the potential implications in autism, you can't guarantee that the genetic role can be controlled (and one more parent who asserts there's no autism in their family simply proves they don't understand genetics nor the interplay between genes and the environment); you can't control for maternal and paternal ages, either, or fetal testosterone levels -- all things that are potentially implicated in the causation of autism.

For Age of Autism to now add the mantra of "We can keep you from having autistic kids if you live in a bubble" to its continual cry of "It's the vaccines or something in them!" is further proof that scientific evidence is not something they are at all interested in. After all, common sense and opinions are all we need, along with a fear of everything in the environment!

Reading through McDonnell's checklist of things potential parents can do to avoid having teh dreaded autism, it becomes immediately apparent that this is a selling of high-dollar (and cheaper) woo:

"If a detox program alone does not relieve fatigue, migraines and or other symptoms associated with being toxic, she may want to consult a well trained chiropractor or medical doctor familiar with nutritional and chelation protocols for a more advanced detoxification process."

"If a woman has several mercury based amalgam dental fillings, she may want to have these removed by a dentist familiar with safe procedure for the removal of dental mercury (www.holisticdental.org)."

"If sick, rest, drink lots of hot water with lemon, take extra Vitamin C and possibly use Echinacea drops (not goldenseal during pregnancy) ."

"Continue with regular chiropractic care on a weekly basis throughout pregnancy with a doctor who caters to pregnant women."

Why bother with the scientific evidence when you've got anecdote out the wazoo:

"More importantly, there are thousands of parents of sick children who can tell you they had a normal child until he or she received several vaccines in one day or that their child was vaccinated despite being ill."

And, of course, McDonnell is pretty much against vaccines, but if you're going to do it, through some woo in first: "I would also suggest priming your child’s immune system with immune protective nutrients prior to vaccinating.  You can give 250mg of Vitamin C, 2 or 3 Echinacea drops and ½ tsp Cod liver oil for a few days before and after the vaccine."

But, to cement her position, she encourages those who choose to react in fear of teh dreaded autism by  letting all the loyal AoAers know that they're part of a special group: "If you decide not to vaccinate, know you are a among a growing group of parents who are shifting their paradigm of health from a fear based, disease model to a vitalistic, trust base wellness model."

No, you're not. You're choosing to make health decisions for your children, your family, and your community based out of the senseless fear that vaccines will cause autism, even though, despite McDonnell's assertion that there is science to show vaccines cause autism, the evidence shows autism and vaccines are not linked. That isn't moving away from fear-based decisions. It is, in fact, a baseless fear with which to make decisions.

While it makes good health sense to eat healthy, exercise regularly, and try to be as healthy as possible while pregnant, following this lady's recommendations is moving in fear, fear based not on the science, but on pseudoscience and woo.

On A Completely Different Note: How Can You Not? Enjoy!

3/26/2010

So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child?

Repost from March 26, 2010.


I recently wrote a research-based blog on facilitated communication. It was a rather long article, I'll admit, but I thought it important to provide as much information about facilitated communication and what the overwhelming majority of studies and meta-analyses showed regarding it. It has, despite its popularity in some sectors of the autism community and its fervent supporters, been shown that the communication comes not from the individual who is nonverbal but from the facilitator instead.


What is a parent and what are educators to do? We want to help nonverbal individuals find a way to express themselves, to communicate their needs, wants, and desires.


There are other modalities that do not have the potentiality of being co-opted subconsciously by the facilitator.


According to Schlosser and Wendt (2008):


"Approximately 25%–61% of learners with autism present with little or no functional speech (Weitz, Dexter, & Moore, 1997) and may be candidates for augmentative and alternative communication (AAC) approaches to replace or supplement natural speech and or handwriting (Lloyd, Fuller, & Arvidson, 1997). Unaided AAC approaches include gestures, manual signing, and finger spelling. Aided AAC approaches include selection-based methods, such as graphic symbols, nonelectronic communication boards,speech-generating devices with synthesized and/or digitized speech output, and exchange-based approaches, such as the Picture Exchange Communication System (e.g., Mirenda, 2003)."


Perhaps some of the confusion in the wider community with what is meant by facilitated communication is the use of facilitation in the context of augmentative and alternative communication:




"It is understood that the primary aim of AAC intervention is to facilitate a child’s communicative competence through the use of multiple communication modalities that are by their very nature supplementing (“augmentative”) or replacing (“alternative”) natural speech (Light, Beukelman, & Reichle, 2003)" (Schlosser and Wendt, 2008).


Son et al. (2005) note that there are many available choices for AAC interventions and that there may be benefit in the nonverbal individual having a role in the decision of which intervention device to use, while noting the difficulty in determining which AAC will be the most effective for the individual.


There are problems, as others more illustrious than myself have noted, with autism treatments not being well vetted in the scientific literature before being implemented. FC is an example of this, but it is only one of many.


I understand the need, the desire, the impetus to do something, anything, to help children with autism improve their functional skills. I understand parents, educators, support personnel, and physicians employing a kitchen sink approach, while I might not agree with that approach.


We need to work better at coordinating researchers' efforts with the actual clinicians, practitioners, educators, and parents so that what is done boots on the ground is looked at in well-designed studies that can evaluate the effectiveness of the approaches being taken.


Even some widely used systems like PECS have not received sufficient research to validate them: "Results of this study reveal that the PECS is widely implemented with individuals having ASDs but without a strong empirical base" (Ostryn et al., 2008).


Does this mean we stop cold? No, it means that while we work to help our children, we look to what current research has to say and where there is clear empirical evidence that treatment modalities are not effective or cause greater harm, we steer clear of them. Where the research has not been done, but no harm has been substantiated, we proceed cautiously, and we advocate for getting that research done. We make sure that the treatments are plausible, as well. If it's too good to be true, well, come on, folks, it is. We educate ourselves about the scientific method, about critical thinking, about the body and how it works, about the brain and how it works. We read the scientific literature and we examine everything with skepticism.  We also proceed knowing the fallibility of our perceptions, our incredible ability to see what we wish to see, and to attribute causes inaccurately. As long as we proceed open-minded and willing to be proven wrong, we safeguard against falling into the woo and losing our way and in the process harming our children.


References


Ostryn, C., Wolfe, P., & Rusch, F. (2008). A Review and Analysis of the Picture Exchange Communication System (PECS) for Individuals With Autism Spectrum Disorders Using a Paradigm of Communication Competence. Research & Practice for Persons with Severe Disabilities33(1/2), 13-24. Retrieved from Academic Search Complete database.

Son, S., Sigafoos, J., O'Reilly, M., & Lancioni, G. (2006). Comparing two types of augmentative and alternative communication systems for children with autism. Pediatric Rehabilitation9(4), 389-395. doi:10.1080/13638490500519984.


Schlosser, R., & Wendt, O. (2008). Effects of Augmentative and Alternative Communication Intervention on Speech Production in Children With Autism: A Systematic Review American Journal of Speech-Language Pathology, 17 (3), 212-230 DOI: 10.1044/1058-0360(2008/021)

Huh: When Life Offers You a Chance to Show Empathy, Get Defensive Instead

You know how, as a blogger, you want to take a minute, occasionally, to make readers laugh? So, you write a post that you think is quite witty, really, and you title it "In Which Smockity Considers Jabbing a Ball Point Pen Into Her Eye" because it's clever. (link replaced with Stork Dok's google doc)


The best of intentions and all. You're just being amusing, sharing how you were minding your own business, being pious and all (perhaps reading the good book in 90 days isn't the best way to learn about what Jesus would do. To be fair, neither was the six hours of bible I took when I earned my bachelor's degree). You relate how good your children are and tell an amusing story about a little girl who wants to use the computer. You describe her in detail, noting her flapping, her toe bouncing, and her repetitive comments about being patient. You say repeatedly that you remember it's not your child, so it's not your business, but you make sure to place the judgment that Grandma's being less than helpful at controlling the child and you feel the grandma's trying to be pushy to get you to get your kids off the computer. You don't ask, you don't let the grandma know they just got on. Instead  you write:


"The flapping intensified until I thought we all might witness the first recorded occurence of self propelled human flight. There was much more loud talk of “patience” and at this point I seriously considered jabbing a ball point pen into my eyeball to distract me from the temptation to address the situation in a less than patient manner. I immediately thought better of it because that would have made driving home very difficult, not to mention the mess of all that eyeball juice."


When commenters tell you rather kindly that it really sounds like the child had autism and that this behavior might have been a huge accomplishment, you get defensive and close the comments down. When bloggers find out about this post and begin to write response blogs and email you, you take your blog down and write this:


"It has come to my attention that my motives are being slandered because of what I meant to be a humorous look at life around me."


Followed by:



"I will not be responding to emails or attacks on Twitter, personal blogs, or forums."


I took the time last night to write you a heartfelt, and for me, restrained email about how big an accomplishment it was for my three to be able to go out with me to Walmart, how proud I was that they can navigate the experience without meltdowns, how hard it was when my oldest was little and we went out.


I wrote you that reading your post, I was sure mothers who had children on the spectrum had immediately recognized that little girl, and that reading your post, hearts undoubtedly cracked.


You could have chosen to take this as an opportunity to show grace, compassion, empathy. You could have used it as a learning experience. You could have apologized for any pain your pen-in-the-eyeball post caused.

You didn't, and I have no doubt that many of us felt our hearts crack wider at reading your update today.

We work hard for our children to help them navigate the wider world successfully, and there is a fair amount of heartache involved in these endeavors when we see them rejected, when we see their tremendous accomplishments belittled and made fun of. And we pray that they will not notice the looks or the whispers or the rejections. But we notice. Each and every time, we notice and our hearts break for our children. For others who experience this fundamental rejection.

But we also buckle down, realize we've got more work to do to make this world more accepting of our children and other people's children. And we don't do it with false piety, either, or a martyr-me this attitude. We recognize that we are frail, we are human, we are flawed. When we make mistakes, we take a big gulp, we look at ourselves, we admit the error and we resolve to do better. We move forward.

So, it's okay that you don't want to respond. It's okay that you want to self-justify this as a being slandered. You were just being funny. That's all. How dare moms get bent out of shape because we recognized that you were being funny about a child like our own. You know, one of God's children.

"Truly I say to you, Inasmuch as you have done it to one of the least of these my brothers, you have done it to me." Matthew 25:40

3/25/2010

Facilitated Communication: A Review of the Literature


The false and exaggerated claims associated with facilitated communication have been exposed.” (Miles and Simpson, 1996)

Facilitated communication is an issue of contention in some areas of the autism community.  Part of the problem is what is meant by facilitated communication. There is little doubt that most people rely on authorities and various heuristics to ascertain the validity of claims rather than taking the time to investigate the research findings for themselves. Even when individuals are willing to take the time and make the effort to wade through research findings, a dizzying array of possible sources awaits them in most subject fields.

Research literature grows exponentially; we are adding to available knowledge at a whirlwind rate and it is becoming impossible to be a qualified generalist. It can even be a daunting task to be a specialist.

As such, even dedicated and skeptical show-me parents are faced with an all but impossible task: how to decide on treatment and therapy modalities for their children. Which experts do you rely on? Is being the dean at a university enough to convey authority and legitimacy (Bilken, major proponent of FC)? Is being a tenured instructor at universities and a scientist who publishes research enough (Boyd Haley and Richard Deth)? What about being a medical doctor and researcher (Wakefield and  Krigsman)?

How do parents decide what autism is and what the best way to move forward is to help our children succeed? It is a difficult decision and I empathize with parents who work to do just that and find themselves inundated with people insisting that autistic children are sick, terribly sick, vaccine-damaged and mercury poisoned (buy our products, our way of thinking, and we will recover your child!) or who have a nonverbal, cognitively impaired and noncommunicative child and are sold the idea that inside is a child who is as smart as their non-impaired peers, if only you’ll help at the keyboard (and already knows how to read and the rules of grammar and all that--no need to teach it).

I don’t have any easy answers, but I personally prefer to rely on scientific consensus and a careful reading of the literature before making decisions. Because I’ve read the research on the faultiness of human memory and the unreliability of testimonials and anecdotes, moving stories are insufficient evidence. Looking at the big picture, what studies looking at hundreds and thousands of individuals have found, is the best way to get at the objective truth. It’s still flawed, still imprecise, and so even it must be held with a lack of complete certainty and a willingness to entertain new evidence.

Here, then, is what the consensus of evidence shows as regards facilitated communication.

The idea of facilitated communication is a noble one, and as defined sounds entirely reasonable. Biklen (1991) defined FC as “Facilitated communication involves hand-over-hand or hand-on-forearm support of students as they point to pictures, letters or objects to augment communication. The facilitator does not guide the students to selections but rather stabilizes the student's movements and in some cases actually slows the person's hand as he or she points to a Choice” (p. 163).


The Facilitated Communication Institute at Syracuse University defines FC as “one form of augmentative and alternative communication (AAC) that has been an effective means of expression for some individuals with labels of autism and other developmental disabilities. It entails learning to communicate by typing on a keyboard or pointing at letters, images, or other symbols to represent messages. Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing (i.e., unassisted typing).” According to the FCI, “The person who provides support is called a facilitator. A facilitator can be a teacher or other professional, a family member or a friend. This support is highly individualized, based on specific needs. Thus it does not look the same from person to person.”

The institute offers workshops for individuals to learn how to be a facilitator and has a thirteen page pdf on facilitator competencies.

The Institute appears to take into account the overwhelming consensus of scientific evidence that points to the lack of efficacy and legitimacy of facilitated communication (see Mostert, 2001 for a literature review pointing to the lack of scientific evidence regarding FC) and offers these provisos:
It appears that this last sentence is an attempt at appeasement; a mere headnod at the overwhelming scientific evidence demonstrating the failure of facilitated communication as a tool to allow those who are nonverbal to communicate. Notice that there is some admission that there has been negative research while still inflating the amount of confirming studies. Ideally, if proponents of FC were willing to ensure the reliability of the individuals’ communications, they would be amenable to research aimed at verifying authorship and would put in place a system of controls to ensure the legitimacy of each individual’s authorship. They would also acknowledge the potentiality for facilitators to subconsciously co-opt the communication process. While the guidelines above have the ring of sincerity, the overall lack of scientific evidence and the unwillingness to admit the problems makes the institute at best pseudoscientific.



Despite the institute’s affiliation with a university and its staffs’ publications, mainstream science still does not hold that FC has any legitimacy:

Van Acker (2006) writes in Outlook on Special Education Practice rather negatively about FC:
Simply put, facilitated communication is a method of augmentative or alternative communication that involves supporting or "facilitating" the arm or hand of a communicatively impaired person while he or she types out a message on a computer keyboard or other device. FC is predicated on the mistaken assumption that many individuals with severe communicative disorders (e.g., those with autism or severe and profound mental retardation) have a level of "undisclosed literacy" that can be "tapped" through this procedure.” (page 10)

“The American Psychological Association (1994) adopted a resolution regarding FC in which the APA concluded that it "...is a controversial and unproved communication procedure with no scientifically demonstrated support for its efficacy" (p. 1). Nevertheless, FC continues to gamer support of some in the educational community (Gerlach, 1993) and to stimulate other practices that incorporate aspects of FC.” (page 10)

The Facilitated Communication Institute provides a good history of the movement, noting the work of Biklen and Crossley, both of whom are addressed in criticism of FC. Not all of the criticism is negative. Mostert (2001) notes that Biklen “believed that people without communicative ability, generally regarded as lower functioning than those having some use of language for communication, could not be assumed to be lower functioning because of their obvious expressive deficits” (p. 288). This is an important concept and one well worth exploring, although it appears that Biklen may have gotten overzealous in his assumptions that individuals who had received no exposure or formal education (or informal) could somehow be hyperlexic and that FC was the way to expose this. Mostert writes: “The assumptions of FC proponents, while not well formed and severely challenged (e.g., Hudson, 1995; Jacobson et al., 1995; Shane, 1994), have precipitated several empirical reviews of the effectiveness of FC” (p. 288).

The Institute offers a page entitled FC Validation, which most evidence-based individuals would expect to be filled with references to scholarly research showing that FC had indeed been validated in the literature. Instead, readers find a list of links to people who say it works and research that in fact doesn’t validate it. Skepdic notes that “The FC Institute was established in 1992.  It conducts research, provides training to teach people to become facilitators, hosts seminars and conferences, publishes a quarterly newsletter and produces and sells materials promoting FC, including a six-part video series for $50 per video ($250 for the series).”

The AAP (1998) provided the following statements regarding FC in the journal Pediatrics:




(Ziring, pps. 431-432)

The AAP’s recommendation:

(Ziring, p. 432).



The Institute is connected to the School of Education of Syracuse University (where Doug Biklen, proponent of FC serves as dean to said department), and perhaps this is an explanation for the lack of scientific evidence. It certainly points to a weakness in the training of our educators. Having taken education courses both at the undergraduate and graduate levels, I can at least personally attest that it is often not an evidence-based practice, but instead one based on philosophical grounds (see here for an example).

There are tremendous problems with a discipline that is not evidence-based, and for Syracuse University to place the School of Education in the hands of an individual who continues to promote as effective and legitimate a therapy thoroughly discredited is discouraging.  Mostert (2002) notes that special education textbooks are rife with inaccuracies,  writing: “Despite the incontrovertible empirical evidence that facilitated  communication (FC) is a completely ineffective intervention, readers should be aware that it is promoted positively in a current special education college textbook” (p. 239).

Lest readers think that criticism is restricted to the scientific field, even the legal field has weighed in on the lack of credibility for facilitated communication: Gorman(1999) writes “FC is criticized because it lacks empirical support,5 frequently results in accusa-tions of abuse,6 and often raises false hope.7 Despite criticism, Biklen continues to promote FC, and many continue to practice the technique” (p. 518).

Norton (2006), writing in Skeptic, discusses studies that incidentally occurred after 1994 (hmmm, bias that the institute stops with 94?) and their complete rejection of FC’s legitimacy: “These studies, along with many others, failed to validate the claims of FC advocates. 9 The empirical data were clear. It was not the autistic children who were authoring the typed messages, but their facilitators.”

Alferink (2007) is fairly damning in his assessment of facilitated communication:

“Observation of the use of facilitated communication showed that children often were not looking at the keyboard when they typed (Shane, 1994a), a task that is impossible without a reference point as is used in touch typing. Research with appropriate controls showed that it was the facilitator and not the child who was responsible for keying in the messages (Green, 1994; Jacobson, et al., 2005), a finding that has been replicated repeatedly. Yet, facilitated communication continues to be widely practiced by those who are either unaware of this research, or who choose to ignore it.” (p. 22)

There is little doubt that the testimonials offered by proponents of FC can be compelling and heartwarming, just as the stories by parents who believe their children’s autism was caused by vaccine injury can be emotionally overwhelming and harrowing. That doesn’t make the testimonials accurate or reliable. They are anecdote and the product of confirmation bias, availability heuristic and self-justification. Where objective measures cannot validly replicate the assertions, one who is evidence-based and aware of the faultiness of memory and the frailty of the human ego with the individual’s need to reduce dissonance must err on the side of caution and be skeptical of the claims presented.

For example, Brandl (2001) writes a moving testimonial to her four decades of teaching children with impairments. She admits her naivety and lack of supports, her inadequate preparation to deal with the population, and her tremendous desire to make a difference, wonderful admissions to make, as asserting the first three shows a lack of hubris. Her story lets us see how someone who wants to make a difference can reach out for any tool that promises to help her do so and how that intense desire can reduce skepticism and the need for empirical validity. Did FC work for her student population? She says it did, but it never rises above testimonial. Blandl writes:

Most of us agreed we would happily leave our positions if these disturbed but charming kids no longer needed us some day! Dealing on a daily basis with severe self-abuse, aggression, and destructiveness helped me understand why such children could not live at home or attend general schools. But very little was known or understood about autism. In fact, we were still affected by lingering beliefs that it was caused by poor parenting and "refrigerator mothers." This was the latter part of the 1970s and, I believe, one of the better institutions. We knew very little, and we helped very few kids.

Having moved through the educational system over the last forty years and seen the incredible changes in how thinking about individuals with impairments are viewed, Blandl has a frontline perspective, not an objective scientific perspective. FC provides hope, hope that hidden inside “disturbed but charming kids” there’s a normally functioning child waiting to get out who already knows how to read, write, and do schoolwork. Blandl takes readers into her experience as she hears about FC: “Then I heard about facilitated communication (FC). I saw the first TV presentation on this new method being used with individuals who looked and acted so much like many of my former students. I was skeptical but intrigued.

She may assert her skepticism, but she quickly is won over to FC and never looks back. Whether her students improved because of FC itself or because they benefited from the touch and the one-on-one attention is not at all clear. And there is no evidence, since this a teacher’s story. There’s no empirical data and no way to ascertain the legitimacy of the claims. It is an example of why testimonials, stirring as they are, are not and can never be evidence of efficacy. Her dedication and her genuine desire to make a difference, to promote inclusion of these students and her apparent appreciation for these individuals cannot be denied.

There are ways for educators to assess the reliability of the facilitated communication. Kerrin et al. (1998) notes that the claims that the early proponents of FC make regarding autistic individuals and the idea that they are indeed hyperlexic (as Biklen contends) is counter to the diagnostic criteria: “This is particularly remarkable because, according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; American Psychiatric Association, 1994), one of the defining characteristics of autism is difficulty in communication. The form of the communication disorder ranges from inappropriate use of syntactic forms (e.g., pronoun reversals) or unusual intonation patterns to no speech whatsoever. In addition, individuals with autism often seem to lack a desire to communicate with others.” *While, a lack of desire may be apparent in some individuals, it is not clear that this is true in the majority of cases--the problem here is the temptation to apply the availability heuristic here and recall all the autistic people we know (or ourselves if we are on the spectrum) and assume it to be representative of the full range of individuals on the spectrum. At this point in time, there does not appear to be a clear statistical picture of where most individuals diagnosed on the spectrum would fall on this--nor whether an inability to communicate verbally (through language, either written or oral) is indicative of a lack of desire to communicate. I would caution readers that their natural inclination to leap to a conclusion based on what they can personally recall or think of is not necessarily indicative of objective reality.*

Overwhelmingly, most literature reviews of FC find that it is not a reliable or effective communication tool Study after study denounces its legitimacy. Kerrin et al. found:

 “This study supports the findings of Eberlin et al. (1993), Myles and Simpson (1994), Smith et al. (1994), Vazquez (1994), and others who have tried to discover objective evidence in support of FC. The participants responded more accurately when the SLP/facilitator could see, in spite of the fact that the SLP/facilitator did not think she was influencing the students' responses and did not intentionally do so.

Kerrin et al. goes beyond the question of authorship and suggest that their method could be useful in the classroom setting to determine authorship. The method they use in their study, Kerrin et al. write, provides a “simple yet effective method of assessing authorship of facilitated responses in an actual classroom setting. Replicating the methods used in this study could provide a way for teachers, speech-language pathologists, and others to determine who is really doing the pointing.

Miles and Simpson (1996), noting that the evidence showed that FC was not a valid tool, tested whether it had any value as an educational tool and concluded, after conducting a study to assess its use as a tool that:

“The results of this study clearly do not support FC as an educational tool. Indeed, whether subjects were evaluated via a traditional strategy, with FC, or with the FC control condition, they averaged below-chance performance or only slightly above chance performance in identifying letters, corresponding letters and their sounds, numbers and positional words; and in demonstrating understanding of one-to-one correspondence and matching positional words and objects. Because there were four response options for each task, one would expect the subjects to have a 25% correct response rate on the basis of chance alone. Accordingly, we are of the opinion that the undeniable conclusion is that individuals who participated in the study revealed a failure to demonstrate knowledge of basic, independent academic skills.

Finn et al. (2005) analyzed various forms of treatment for communication disorders based on ten criteria for pseudoscience and found that facilitated communication met 8 of the 10 criteria for pseudoscience: untestable, unchanged, confirming evidence, anecdotal evidence, inadequate disconnected, grandiose outcomes and holistic:

“The largest point of contention in the facilitated communication debates is, essentially, that the demonstrations of effectiveness seem to come from situations in which the facilitator knows the answer or could be the source of the information, and that tests in which the facilitator cannot know the answer tend to show that facilitated communication breaks down (e.g., Mostert, 2001; Shane & Kearns, 1994). This issue appears as arguments that can be described in terms of several of the criteria for pseudoscience: whether claims of facilitated communication’s effectiveness are phrased clearly enough to be testable (Criterion 1; see Mostert, 2001); why facilitated communication’s proponents have allowed it to continue to be used, essentially unchanged, in the face of conflicting evidence (Criterion 2; see Biklen & Cardinal, 1997); whether the support for facilitated communication is based only on confirming evidence (Criterion 3) or anecdotal evidence (Criterion 4), failing to incorporate the conflicting evidence and the evidence from controlled studies (e.g., Mostert, 2001; Shane & Kearns, 1994); and whether adequate proof is provided to support the rather amazing claims that persons with moderate to profound disabilities can write complex language after all (Criteria 5 and 9; see, e.g., Green & Shane, 1994; Mostert, 2001). There are also substantial debates about what Mostert (2001) calls the theoretical or conceptual underpinnings of facilitated communication, including Biklen’s (1990) original explanations that autism is a disorder simply of expression, not of language or cognition; these are debates about whether facilitated communication is disconnected (Criterion 7) from more generally accepted descriptions of autism, mental retardation, and other problems. The debates also clearly address questions related to what facilitated communication’s critics see as grandiose claims (Criterion 9) of almost unbelievable outcomes. The debates about facilitated communication also provide an example, finally, of what the pseudoscience criteria refer to as holistic claims (Criterion 10).” (p. 181).


Even current scientific consensus finds nothing regarding the efficacy or legitimacy of FC has changed, although the rhetoric of its proponents has. Mostert (2010) writes:  "However, the FC literature since 2001 also shows increasing acceptance of the technique, ignoring empirical findings to the contrary. Further, more recent pro-FC literature has moved beyond acknowledging that FC is “controversial” to a working assumption that it is an effective and legitimate intervention" (abstract).

To say one takes a position on the scientific validity of facilitated communication is not the same as deriding the individuals who work with students with impairments and who genuinely wish to help them communicate with the world at large. It’s also possible that where Blandl uses the terminology facilitated communication that in large part she means augmented communication. Where individuals can independently utilize computers and keyboards to communicate, the communication cannot be said to be facilitated. We have moved to a different type of communication. Where consistency in answers can be demonstrated, where authorship can be verified, then I would argue, you have a clear indicator that the individual is using augmented communication, not facilitated.

If facilitated communication appears overall to be the work not of the individual but is instead the agency of the facilitator, why do facilitators insist that the communications are originating from their clients and not themselves? These are not people who are willfully taking advantage of their clients; they are dedicated professionals like Brandl who dedicate their careers to helping the impaired. Wegner et al. (2003) investigated these questions regarding authorship and the facilitators’s states of mind. Wegner et al. found that  their  “experiments render authorship confusion even more starkly, as they show projection of action to others under conditions when the other is entirely inert. In everyday social settings, the processes at work here might continue to apply, however, whenever a person believes that some other agent could conceivably be the source of an action the person has performed” (p. 17).

It is important to remember that we are poor gauges of causality, that we are often unaware of when and how we are primed to give certain answers, and that when we want something badly, we have a way of making the things we believe will occur happen. Wegner et al. found that:

Belief in the possibility of FC brought with it a set of associated perceptions. People who were led to believe, or who happened to be believers, tended then to perceive that they could read the
communicator’s muscle movements. They even reported feeling a pulse coming from the communicator’s fingers when this could not have happened, whereas those who did not believe reported not perceiving movement. Belief in FC provided a context for interpretation of the actions that were produced, allowing the participants to view the answers as emanating from the communicator and not from themselves” (p. 16).

Facilitate communication provides an apparent dead-end. While the use of augmented communication tools should be pursued for children who are unable to communicate orally, it is important to put in safeguards to make sure that the individual using the tool is in fact the one communicating. It is not enough to rely on a facilitators' good intentions and promise that the communication originates with the individual and not the facilitator.* Just as thousands of parents have spun themselves a tale of vaccine-induced damage for their children's autism, along with the cry that thousands of parents can't be wrong, science shows clearly that, yes, they can be and often are. We are none of us infallible and none with perfect recall. We see what we wish to be, and we rewrite our tales to match our present. Parents and educators who want desperately to communicate with non-responsive children have every reason to believe that FC is real and genuine and little reason to openly listen to the science. It's another one of those instances of self-justifying to reduce the dissonance.


*Passage is bolded because readers may miss my conclusion. edited 9:26pm 03.25.10

References:

Alferink, L. (2007). EDUCATIONAL PRACTICES, SUPERSTITIOUS BEHAVIOR AND MYTHED OPPORTUNITIES. Scientific Review of Mental Health Practice, 5(2), 21-30. Retrieved from Academic Search Complete database.

Biklen, D., Morton, M., Saha, S., Duncan, J., Gold, D., et al. (1991). "I AMN NOT A UTISTIVC ON THJE TYP" ("I'm not Autistic on the Typewriter"). Disability, Handicap & Society, 6(3), 161-180. Retrieved from SocINDEX with Full Text database.

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