Facilitated Communication – Listening to people without voices.
I am speaking in August in New Hampshire and found one of my co-presenters is Jamie Burke so looked him up. I so enjoyed reading of Jamie’s progression from facilitated, typed communication into functional, interactive speech, that I really felt compelled to share it: http://suedweb.syr.edu/thefci/9-3bro.htm
In this article, Richard Attfield is also cited. It was exciting to read how Richard is also progressing with speech as I’ve known Richard since his teens when he first began with typed communication and he’s a courageous, self-challenging, determined man whose battle to gain control of dysfunctional language has helped inspire others to believe, with practice and via a pathway which makes developmental sense TO THEM, progress and that intelligence should never be judged by dysfunctional language, the same as intelligence in those with compulsive disorders and cerebral palsy should never be judged by involuntary or restricted movements.
I’m very proud of these two young men and the wonderful emergence of those with autism who have have been functionally ‘non-verbal’ onto the autism and disability talk circuit. This is long overdue.
As someone who had dysfunctional language till age 9-11 who was also helped enormously through a typewriter at that age and assistance to link written words to interpretive meanings via gestures for the words (as the pictures didn’t like directly to meaning either), I passionately waited for those like Jamie and Richard to be listened to in these arenas.
Most autism conferences are dominated by presenters on the autism spectrum who either always had functional language or had articulation problems (as in the case of Temple Grandin), or speech delay (as in the case of Temple Grandin and Wendy Lawson) but had functional speech by infancy or early childhood. Since Sue Rubin‘s academy award nominated Autism Is a World, and publications of works by people like Lucy Blackman, Sharisa Kochmeister, Larry Bissonette and Alberto Frugone, this is changing.
Those battling with extreme impulse control challenges who are echolalic with lots of stored phrases which fire by association or at random, have a very different battle in order to develop functional interpretive language.
To use an analogy, the first group are essentially trying to get a new born horse to walk and to walk well without clumsiness. The second group are trying to tame a young wild stallion nobody can come near so it can interact in a comprehensible and relatively intentional and controlled manner. Asking the first group what its like to tame dysfunctional language and progressively lead it to functional language (typed or spoken) is like asking someone in the hardware store to give you expertise on shoes.
If you want to understand language delayed children who speak by age 2,3 or 4, then ask those who’ve had that. If you want to understand the impulse control challenges of those with dysfunctional speech in acquiring functional communication, ask those who, more than speech delay, poor articulation (including Oral Dyspraxia), had these type of issues. And if you want to understand those for whom fear is the greatest obstacle in Selective Mutism within their autism, then ask someone whose experienced this (and some have experienced all three, others only one or the other).
Communication challenges in autism and their social, emotional and learning consequences are dramatically different for those in each of these groups. We need to question the presumptions of any ONE spokesperson in ONE of these groups when they assume absolutes of ‘high’ or ‘low’ functioning or presume the absolute validity of intelligence based on IQ tests given to people with language processing or impulse control disorders they have not, themselves had.
If we are too impressed by the culture of celebrity to question such things, we may be sitting goggle-eyed listening to the hardware salesman selling shoes. Go find a shoe shop.
… Donna Williams *)
You’re speaking in New Hampshire in August? Cool. I think I will have to try to figure out how to come see you. I have wondered if you would ever come near Vermont.
I spoke in New Hampshire last year — in a presentation where there were four people, one using FC and speaking some of his words after typing, one(me) using mostly independent typing and a little FC when I got exhausted, and two speaking with varying degrees of fluency. I agree that people with very unusual language histories (whatever those may be) really need to be heard.
(Short versions of some of our presentations are in this newsletter which is a PDF file. There’s a picture of me with my cat in it too. Some cats can do FC and other facilitation besides communication too, and she’s one of them.)
Hi Amanda
Loved the pic with the cat 🙂
You both look very cute in that.
Have you seen my painting called ‘The Wall’?
I think you’d like it.
I still have my old sensing-based language (of pattern theme feel language which I wrote of in Autism and Sensing; The Unlost Instinct) which is from jingles, adverts, songs.
It sometimes fires first, sometimes it fires but I manage to suppress it to stick to interpretive language (the one word one meaning language system most people use). Sometimes we get combos.
Going out we get anything from ‘I like the nightlife baby’ (means ‘lets go’), ‘to market, to market’ (to the village), ‘shed’s are us’ (goodbye), ‘jiggity jig’ (then I’ll come back home), ‘swing on a star’ (I know what I want to do), ‘would you rather be a pig’ (don’t know what I want to do). So this morning we got a combo on the way out ‘coming with you, jiggity jig’ (I’m coming with you, then coming home).
It’s tiring to try and suppress a natural system all the time just because other people don’t understand it in their language. Chris learned to ask ‘what does that mean’ and eventually over 2-3 years I could tell him their rough meanings. Then he’d hear a tic and say ‘what does that one mean’ and I’d say, ‘that one is rubbish, its a tic’ 🙂
I don’t stay long in verbal conversations because its hard not to slide into Donna speak. When I’m with those who accept it or even better understand its system or even better can tell Donna speak from verbal tics… then I’m so much more relaxed and really like the person. I have a friend who understands the system of sensing based language and Chris understands a lot of it and now sometimes speaks in it when he doesn’t get a response from interpretive language statements. This is fab.
I spent my first 9-11 years developing Donna-speak so why just throw a language away just because other people use a different system and think yours makes you ‘nuts’? But once I got interpretive language that’s all people wanted. But they expected mine would just disappear to make my interpretive speech more ‘functional’. That’s much harder, and also hard emotionally, psychologically. I also have a system of gestural signing. I’ve stopped being ashamed of that too.
Imagine how much social anxiety people could have reduced by learning my systems? How much easier they could have made it. They took the hard way and took me that way too. I think much of my success was in spite of them more than because of them. Learning their system is not the end of the battle because if in the process one has been taught to hate oneself and hate their system and fear their world, then they have defeated themselves in the process.
This is where we need to distinguish good teaching from bad. Good teaching builds bridges, builds respect, empowers people and those who come away as teachers feeling they themselves learned nothing, then didn’t empower the student to teach them too. Teaching should be an exchange of systems, not an experience in war and domination.
… Donna *)
http://www.donnawilliams.net
My most natural language seems to be… this is not easy for me to describe (and I’m skipping how I developed language because that’s too twisty and tangly to recount shortly)… being in relation to everything around me, moving in reaction and relation to everything around me.
I am often delighted to find another person who speaks/understands it, it is way more comfortable for me to sit around responding to my surroundings while another person responds to theirs with me in it and them in it, than to sit there and type at them, although I can type up a storm sometimes when I put my mind to it.
It’s one thing that’s always missing to me about online interaction, everything gets condensed down to wordwordword stuff, all the surroundings that enter into the conversation are disappeared. People often forget that while I’ve become a good writer by conventional standards, writing isn’t my homeland and I always feel like a foreigner in it. I don’t regret having learned the language but I’m glad I haven’t lost mine either.
One thing I liked about the New Hampshire conference was that I could say autie-hello to people by varying my responses around them instead of typing words at them, and they could say it back in their own responses.
I saw a lot of your gestures on your blahblahblah video (which I loved) and they made it easier to follow the words, where normally I’m lost on lecture videos. So I’m glad you’re not ashamed of those now.
Hello Donna and Amanda,
Lately, I have given a lot of thought on how we expect those with severe autism to meet us more than half way. I have worked with children with severe autism and have a unique perspective on what I speculate might be occurring, based on my experience with many nonverbal children with autism with severe communication, movement and sensory problems. Unlike both of you, I do not have a first person perspective, but I would be honored if you took a few moments to peruse some of my ezine articles related to facilitated communication and relationship.
http://EzineArticles.com/?expert=Mary_Ann_Harrington
Warm regards,
Mary Ann