6/30/2010

Confusing Terminology: When Parents Use Jargon Differently (or when facilitated is used instead of augmentative)

Nothing pushes parents' buttons quite like posts that seem to be or are in fact decrying their favorite mode of intervention for their autistic children.

Write that the evidence of gfcf efficacy is mixed at best (and that's charitable) and you'll have parents screaming it recovered their child, damnit! As a parent who used the gluten free casein free diet for an interminably long four years (and I was on it, too, and never cheated on it), I watched as the evidence came in, as studies were done, and as my oldest would sneak off of the diet, and then, in the last year we were on it, my middle child. As evidence mounted to completely blow out of the water the whole excess opioid theory, as my two oldest indulged in gluten and casein with no intestinal distress and no noticeable difference in severity of issues, well, heck, I gave in and sampled some real food again (I'd stopped eating wheat and dairy with my children because of long term intestinal issues), and lo, I was not ill (not any more than usual) and damn, it was good! And when my biopsy results came back showing I didn't have celiac disease (after two months back eating the good stuff), we stopped the diet entirely and got rid of the rest of the cardboard food. And we never looked back. I don't regret the four years on the diet; it allows me an ability to relate to other parents who are willing to try a lot of stuff to help their kids.

What I'm getting at, in my long-winded way, is I've tried some stuff. Oh my. We didn't go terribly far down the woo trail, but we took a few steps on it. We did some herbs. Nope, no difference. We did B6 and magnesium for the boy. Nope, no difference. And, of course, the four long long long years of gfcf. This is not to say that all three of my children didn't make tremendous gains while on the diet, as they did. They kept making those gains off the diet, too, though. I get trying things, especially if it's diet related. It's a fairly safe change to make. It isn't easy, but it's not likely to do tremendous harm if you're making sure it's nutritionally balanced. I just don't get being so wedded to an idea, a theory, that when the science becomes available to say that it doesn't appear to work, one would refuse to consider, oops, maybe I made an illusory correlation, let's see.

Other areas of autism therapies/interventions that seem to draw a lot of ire is when someone takes the time to point out that facilitated communication has been debunked and that rapid prompting method has never been studied, but bears tremendous resemblance to facilitated communication.

Individuals who are nonverbal can benefit from assistive technologies (which can also be used to facilitate). There is no reason ever for facilitated communication to occur. If an individual can't press the buttons, can't spell, then PECS and similar systems can be used. NSNET provides explanations of assistive technologies:



What Is A Functional Limitation? 
A functional limitation is any physical, mental or sensory condition that prevents a person from caring for him or herself while communicating, working, playing, or simply functioning in an environment where other people can function normally. Limitations can range from a difficulty in interpreting information, to blindness and hearing loss to the inability to move all or part of one's body. Fortunately, functional limitations need not keep any individual, regardless of age or type of disability, from developing their potential and leading a full and productive life. Advances in technology has made it possible for people to meet the challenges of their environment and become independent and productive as possible.

Appropriate assistive technology applications are intended to decrease the functional limitations of a person with a disability, potential outcomes can include some of the following categories:
Adaptive Play: This includes the use of commercially available battery operated toys/activities to allow young children and adults to experience control over their environment despite severe physical restrictions, motor control deficits and developmental disabilities.
Switches: Single and potentially multiple switch access methods can allow the person with even the most severe disability to achieve control over many different aspects of their environment, including play, communication, education, environmental control, mobility, and perhaps employment.
Environmental Controls: Devices and technologies (Electronic Aids) designed specifically to allow a person to experience better control of their environment can increase one's independence and ability to perform routine tasks.
Augmentative and Alternative Communication (AAC): AAC includes any technology application that results in the improvement of a person's communication with individual, in-groups and even by way of telephone. AAC involves maximizing of specific language concepts and strategies to enable the non-verbal person to more actively interact with their environment.
Sensory Disabilities: Many forms of assistive technology can enhance our sensory interactions by modifying the means by which information is received to accommodate our sensory limitation, or by re-routing the information to a form where other senses can be involved.
Alternative Learning Strategies: Somewhat similar to sensory disabilities, alternative learning strategies can be developed for individuals with specific learning deficits. By capitalizing on the strengths of the individual, computer based adaptive learning hardware and software can enhance the overall learning experience.
Adaptive Computer Access: Computers can be adapted through a variety of methods to enable alternative input control or output required by the person with a disability. These adaptations may be in the form of additional hardware, software, or a combination of the two. Most computer operating systems today allow for customization of the computer control process to accommodate nearly any special needs of the individual with a disability.


 No one, no one, no one, no one (do you get me here?) should be so gullible or desperate to fall for facilitated communication. No one. We're not talking about teaching a child to type by hand-over-hand and then backing off, never claiming that the instructional effort is the child's communication. Scientists and researchers are using facilitated communication in a clear and precise way. Please note that laptops, letterboards, and other assistive technology can be co-opted for facilitated communication or rapid prompting (many people will use the term rapid prompting but what they are doing is facilitating).

For an example of facilitating through the use of technology, watch the video below and note the use of the stick to guide the student's touches:



One should be immediately skeptical of this, but for some reason, many let the desire to believe that this kind of communication can occur with help override what should have alarm bells going off.

Again, let me make abundantly clear that I completely support augmentative and assistive technologies that will allow nonverbal children the opportunity to communicate. What I am against is individuals taking that technology and abusing it and the autistic individuals in their care through facilitating communication. Safeguards must be put in place so that it is abundantly clear that the communication is coming solely from the child. Neither FC nor rapid prompting allow that assurance.

The Frontline video from 1993(!) is still  worth watching as it makes it abundantly clear what's going on. It astounds me what people will believe. Don't believe me? Try facilitating someone, fading back your grasp as far up and as lightly as you can go. Think of it as a fun game to play with your children and spouse. Then tell me you can ever watch someone holding another person's hand or arm and buy that the facilitator isn't co-opting it. In the meantime, watch the Frontline video with a skeptic's eye, and ask yourself how easy it would be to make parents believe their child was communicating and why even subconsciously a therapist or individual assigned to assist could facilitate and believe the communication is legitimate. We tend to discount misses, so parents wouldn't attend to when the child didn't correctly respond, assuming instead that the child is tired or being resistant before considering that the child hadn't communicated in the first place.

We must take care not to fall victim to our own heuristics and biases and our overwhelming need to reach our children.


Part 1 of the Frontline episode:



Part 2:



Part 3:



Part 4:



Part 5:



Part 6:

4 comments:

Mom26children said...

KWombles,
Any one who watches Facilitated Communication and still believes it is not a "slight of hand" routine should have their eyes checked by a professional.
I am amazed by the gullibility of some very desperate parents.
Shame on these charlatans for bilking these parents out of money...talk about a Ponzi scheme!!!

farmwifetwo said...

Having had 2 children learn to "communicate" and knowing full well that you had to go through the steps, hit all the milestones, I do not believe for a moment that longterm FC works. To redirect my son at school when he does his school work they touch his wrist when he starts stimming/echolalia and can't redirect on his own. They do not hold it and the printing is VERY obvious which is EA and which is child and never do they claim otherwise. Computer work - having used FC as a "hand over hand" teaching tool that is no longer needed - is all his own.

As for diets to work you need an unlying cause to fix. Which is why it worked removing dairy for the "nld" eldest and not on the "autistic" one. Cure... not even close.... that was all the private speech therapy, homeschooling etc. But he was "stoned", it increased the "autism" probably due to constant stomach upset and pain.

What needs to be done with the diets is for Dr's to realize that those with autism can suffer from other illnesses too... especially with a family history of IBS. And these illnesses can impact their ability to cope with the autism.

"Some autistic children are like that" when you ask the Dev Ped about the unending diahhrea and nasty rashes.... is not appropriate.

Roger Kulp said...

From what I can tell,Rapid Prompting Method sounds even more wooey,gooey than FC.I don't know about anybody else,but I process information slowly,with as little distracting (sensory) noise as possible.One more reason I couldn't handle school.This sounds like it would make learning even more difficult.

The comparison between the diehard believers of FC,and the antivaxers is obvious,but I think that people fifteen or twenty years ago were far more willing to accept data that proved what they believe is wrong,than they are now.America and the world have been dumbed down,and it's cool to be an antiscientific idiot.We all know this,science based bloggers waste thousands of words and hours over this,but the question is what do we do about it.

And as someone with GI issues,and especially metabolic disease,GFCF, and its variants,like corn and soy free,did not help me either,and the one year I tried it,it just made my life all that much more difficult.

Roger Kulp said...

farmwifetwo,the mindset amoung doctors that some autistics just have serious medical issues,GI, seizures,or whatever,and that these problems are just a part of autism,is something we need to fight as much as we do the antivaxers.They are the other side of this hateful coin,and one feeds upon the other.

For now,the only thing we can do, as parents or patients, to have our medical problems taken seriously,is to try get some other diagnosis other than autism,and I don't know if everybody else is able to do this.