7/30/2011

Respect People with Disabilities: FC Doesn't

Under pages is a piece on what I believe and why.


About neurodiversity, I wrote (more than a year ago):


Neurodiversity.
Neurodiversity is about accepting people's value and worth is independent of their functional level.
It is about working to help people be accepted and supported.
It is about helping people reach their potential.
It is not inherently anti-cure; if it exists as a movement, it would reject the terminology.
It's about making people's lives better.


I stand corrected


"For many autistic people, neurodiversity is viewed is a concept and social movement that advocates for viewing autism as a variation of human wiring, rather than a disease. As such, neurodiversity activists reject the idea that autism should be cured, advocating instead for celebrating autistic forms of communication and self-expression, and for promoting support systems that allow autistic people to live as autistic people."


 By choosing to have the neurodiversity symposium encompass and showcase facilitated communication, the key promoters of the construct are signalling their support for a debunked communication form and actively supporting its continued use. And they are obviously, openly anti-cure. Based on the language here, one could argue that if an autistic individual happens to communicate by smearing feces, that this should be celebrated. I hope that's not what they mean.


Perhaps there's a failure to think through here on their part, but regardless, it seems to be an extreme position that I can not, after having worked  for two decades with my son to help him overcome obstacles, to learn to communicate, to function in the wider world, support. I have not sought to make him neurotypical, but I have worked to help him function better, to master new skills, to become more autonomous (the same as I've done for my daughters). Imagine if I'd chosen to celebrate his (and their) autistic forms of communication and self-expression involving feces instead. 

Just as the anti-vaccine movement couples its belief system with quackery, it is apparent that its opposing movement, although professing to be pro-science, is not necessarily so. This is deeply disappointing, regardless of whether it comes from a lack of information or intentional support of quackery.


I support evidence-based practices and a position of doing no harm. Based on the overwhelming scientific evidence, facilitated communication is not evidence-based and it does in fact do a great deal of harm. 


I am changing my what I believe and why page. In place of the neurodiversity section, it will read:


Respecting People with Disabilities.
It is about recognizing that people's value and worth is independent of their functional level.
 It is about working to help people be accepted and supported.
 It is about helping people reach their potential.
 While respecting each person's uniqueness, working to reduce suffering and improve functions are actively pursued.
 It's about making people's lives better.




Lest one think that FC has any support from evidence-based organizations:


From BAAM's links on resolutions:


Facilitated Communication
Reviewed June, 2008Approved by Council, October 20, 1993To be reviewed June, 2013
Facilitated communication (FC) is a process by which a "facilitator" supports the hand or arm of a communicatively impaired individual while using a keyboard or typing device. It has been claimed that this process enables persons with autism or mental retardation to communicate. Studies have repeatedly demonstrated that FC is not a scientifically valid technique for individuals with autism or mental retardation. In particular, information obtained via (FC) should not be used to confirm or deny allegations of abuse or to make diagnostic or treatment decisions.
*Endorsed by the American Academy of Pediatrics.
This is a Policy Statement of the American Academy of Child and Adolescent Psychiatry


AAP's policy
 "AIT and FC are controversial treatment options for autism and other disorders. Although two investigations indicated AIT may help some children with autism,56 as yet there are no good controlled studies to support its use. In the case of FC, there are good scientific data showing it to be ineffective.11-14Moreover, as noted before, the potential for harm does exist, particularly if unsubstantiated allegations of abuse occur using FC. Many families incur substantial expense pursuing these treatments, and spend time and resources that could be used more productively on behavioral and educational interventions. When controversial or unproven treatments are being considered by a family, thepediatrician should provide guidance and assistance in obtaining and reviewing information. The pediatrician should ensure that the child's health and safety, and the family's financial and emotional resources are not compromised. It is important for the pediatrician to obtain current data on both AIT and FC as they become available. Until further information is available, the use of these treatments does not appear warranted at this time, except within research protocols. Information on communicating with families who choose an alternative medical approach for their child with chronic illness and disability is also available in the literature.21"

Also rejecting FC, according to BAAM, are the American Association on Mental Retardation (now The American Association on Intellectual and Developmental Disabilities [AAIDD]), American Psychological Association, American Speech Language Hearing Association, Association for Behavior Analysis, Association for Science in Autism Treatment, Autism Society of Canada (ASC)/La Société canadienne de l ’autisme (SCA), Behavior Analysis Association of Michigan, Heilpädagogische Forschung, Resolution zur Gestützten Kommunikation, among other organizations.

*Update: If you think that FC and neurodiversity don't have history, indeed they do: http://www.autcom.org/conf2008/schedule.html.

"A) Neurodiversity: Views from Those of Us Who Are Supposedly Neurologically Atypical

Jacob Pratt, Jamie Burke, Daniel McConnell and Ari Ne'eman
The current neurological research shows that most of what DSM-IV says about autism is misguided at best. We know that people with autism labels have a lot of the same movement, anxiety, communication and sensory differences as so-called neurotypical people, but to a different--that is, diversified--degree. The panel members will discuss our neurological similarities and differences--both with each other and with people who do not acquire the autism spectrum label."


And if you think that the people organizing the event know about it and wouldn't push woo; of course they know all about it.  Syracuse U is the home of Biklen's organization. Biklen is the American pusher of facilitated communication.

18 comments:

farmwifetwo said...

FC has been discussed with the ACS SLP and the Teacher. One of the criteria for the ACS program is the ability to use the equipment independantly. The second is expressive language capability.

Therefore, if you can't use "pec's" or guestures, or signs, or... independantly... you don't qualify for the program. They don't do "FC". If they did, we wouldn't be in the program, nor would my son attend public school.

farmwifetwo said...

http://www.thesudburystar.com/ArticleDisplay.aspx?e=3211701

Be careful what you wish for - read the comments they say the same thing. I've said it many, many times... turn autism into a difference... bye, bye, funding.

Socrates said...

Neurodiversity, is all about us, not you.

Many Autistics will have some reservations about you unilaterally hi-jacking and re-inventing "Our" movement esp. now you've turned light blue.

Seriously, you'd need the Brooklyn Bridge to get over yourself.

kathleen said...

"Neurodiversity, is all about us, not you." Really? So..only people on the spectrum are neurodiverse? Sounds like we need a whole lot of bridges.

KWombles said...

Socrates,

I think I unequivocally rejected the espoused principles of neurodiversity as outlined in the symposium.

I never said neurodiversity was all about me. In fact, in my original what I believe, it was clear that it wasn't about me at all. Maybe you missed that part?

I understand now, though, thanks to your post that anyone not diagnosed with a spectrum disorder cannot belong to the movement. Good to know. Make sure you pass that on to all the neurotypical allies who consider themselves proponents of neurodiversity.

I have no interest in hijacking "your" movement. So, it's your movement again, then? You're now anti-cure again?

Fascinating...so people taking seriously disabled people who can't communicate and putting words in their mouths, so to speak, is cool with you? Good to know.

This isn't about me. The post isn't even about me. It's about respecting the autonomy and value of the most vulnerable in our population.

Facilitated communication does not do that. At least one, the major, offshoot of neurodiversity is actively supporting FC.

I'm not going to apologize for working to provide local families with support and information and working within an organization that allows me to do this.

The directory is INCLUSIVE. Why would it come as a surprise that I would then act in an inclusive way in my local community?

Socrates said...

You can be whatever you want.

If one of Autism Speaks' hand-maidens want to single-handedly co-op and redefine our Movement...

Well... business as usual...

Socrates said...

Awesome Kim, Orac's mini-me strikes with da evidence based ranting...

so people taking seriously disabled people who can't communicate and putting words in their mouths, so to speak, is cool with you? Good to know.

*snerk* You taking lessons in rhetoric from Perry and the Tea Party?

I'll get my coat...

KWombles said...

Didn't answer my questions, did you now?

Why not?

Hahaha, single-handedly co-opt? I think not.

KWombles said...

Orac mini-me? Dude. I am Orac in a skirt. Get it right.

farmwifetwo said...

If you control the "voice" of the severely disabled, you can get them to repeat your message without their consent.

I've never known another group that lobbies on behalf of the disabled that tries to control it's members voices and silence their individual thoughts through a method that has been proven time and time again to be the facilitators thoughts, not the person doing the typing.

And then you wonder why I push so hard to give my children 'voice' that cannot be silenced by those that claim to speak for them. I am horrified at the thought that someone else claims to speak for them.... nobody, nobody at all, has the right to speak for anyone else without their consent. If consent is NOT given through independant means... then you cannot speak on their behalf and it is up to their family to do so. Not strangers with an agenda.

jack said...

I've been a part of discussions where Socrates has attacked Ne'eman for being "shiny happy" and not concerned enough with the obvious difficulties of many autistic people, that need to be overcome and not simply accepted.

Maybe it's a schtick that's more about arguing with people than promoting a consistent point of view.

If "our" movement doesn't have room for Kim then we've already lost, I think.

Sarah said...

Socrates,

From what I have read so far with your comments, you have said absolutely nothing that is worth value to this conversation. An intelligent conversation or comment does not include insulting Kim or anyone who agrees with her.

As for neurodiversity, heck yes it includes everyone that has a disability or a family member of an individual with a disability. It can also include therapists and professionals who work diligently with those who are affected too! Therefore, it's NOT just all about you, so get over it!

What Kim is trying to say is that Facilitated Communication is not a proven method, just like those who have researched other treatments for Autism, such as Biomedical. For some people, these may work and may not work for others. Although, as a parent of two non-verbal children on the severe end of the spectrum, I don't see how allowing someone else to use hand over hand to express what someone else is thinking would work.

Plus, if a specific treatment is being used for the wrong purposes as in the specific case that has been talked about from Detroit, then it creates a problem and questions its effectiveness from across the board, This has nothing to do with Orac, hijacking "your" movement or Autism Speaks, so I am not getting why you are throwing them into the mix. Honestly, it doesn't make an ounce of sense.

KWombles said...

Thank you, Jack, Sarah, fw2.

MJ said...

Kim,

I know we disagree on many things, but I am glad to see that you are seeing past the rhetoric of neurodiversity to what the movement is really about.

It is one thing to accept people's differences and treat them with the respect they deserve but it quite another to pretend that autism as a whole is just another variation and shouldn't be treated.

Most of the hard-core ND advocates that I have run across have payed lip service to the first idea but really seemed to believe the second.

Kudos.

Sarah said...

You are welcome Kim! :)

KWombles said...

MJ,

I appreciate the positive comment.

Trish said...

I like your new statement.

You may be happy to see that one of the sessions at the autism conference in State College this week is on Evaluating Autism Treatments: Science and Pseudoscience.

The blurb says "This presentation will distinguish between science and pseudoscience and describe how specific autism treatments, such as Facilitated Communication, are pseudoscientific."

Should be interesting!

KWombles said...

Thank you, Trish.

That's encouraging to hear! :-) I hope you'll write about it when it's over.