Tuesday, June 10, 2008


Having a non-verbal autistic child holds some special challenges and seems to put us at the heart of some of these moralistic, therapeutic and causational issues. To give a quick recap, Livie regressed from 50 odd words down to zero over a period of a few months from around 14 months old to 20 months. For a more heartfelt description, see previous post .
Currently, we are dancing the line between using 3 types of communication: Trying to get her to vocalize, having her use sign language and using a PECS book. Each has its plusses and minuses, advocates and detractors, and there seems to be clear battle lines drawn between them. Many will argue that trying to force spoken word will devalue the child's other communication abilities; sign advocates seem to be staunchly against PECs (for you Jewish folks, it's kinda like kosher, you can't let the sign touch the PECs picture). PECs will say it transitions a child easier into other forms of electronic forms of communication. Speech people will talk up the mainstream opportunities speaking will afford.
To add to the mix is her diagnosis of apraxia. It's tough to get a hold of where or even if apraxia is part of the spectrum. What is it that 'causes' acquired verbal apraxia, which is how our speech therapist initially named it. Just the words connotate that her apraxia condition was caused by some injury.

Do I push to get words; do I force her to use sign, which she has trouble with because of motor planning or do you go with PECS and somewhat limit her ability to freely communicate? Is her 'non-verbal-ness' part of who she is? I don't think so, or at least her 'non-communicative-ness' isn't part of her. She is frustrated when she cannot convey herself to us.
Those of you with non-verbal children can probably empathize. You want to help them get it out and many times it's just not clear which way is best and right. How far do you push, WHAT do you push, how do you coordinate your wishes on to therapists and school systems who are often in another camp when it comes to 'what is best' for you child?
Just writing about it makes me tired, no clear answers, lots of opinions and you in the middle just trying to do what's best. Sorry, I'll think more funny stuff next time...


Maddy said...

It can be exhausting just to 'extract' one word. 'One word' that nobody else of the planet understands because the delivery is hampered.

We did have 'gesture' and mimicry as his preference, but sometimes he could go all day without a single word.

Sending you an energy boost [I hope]
Best wishes

Phil Schwarz said...

Here's a question: can she start to associate letters with sounds? You're right that one problem with PECS, or any finite picture system, is that it's limited -- it's not extensible, the way spoken or sign languages are. If she seems to have any sort of aptitude for starting to learn phonetics... then a computer keyboard and a text-to-speech program would be a good thing to experiment with.
When my son Jeremy was preverbal, he *loved* vestibular stimulation... he could ride the swings for hours if his parents didn't tire of pushing him. When I pushed him, I (being the Aspie dad that I am) recited the alphabet by rote with each push: A, B, C, D... and as the cadence and sequence became part of his sensory world, he started repeating bits of it. It was like I'd imagine the first communication the SETI folks might receive from Out There! His little voice repeating the test signal I'd been broadcasting with each swing-push. Driving in the car one day, he started repeating it. And soon, when I said "A" from the driver's seat, he'd say "B" from his car seat, then I'd say "C", he'd say "D"... Just a sequence by rote, at first, but it paid off many times over, when we started introducing visual letters and the *sounds* they made. Then eventually, small *words*. And at that point, a 1994-vintage software program (this was 12 years ago) called KidWorks 2 which had a very-large-type simple word processor, and a text-to-speech synthesizer that would "read" whatever the user highlighted before hitting "play", became a much-loved plaything and a critical learning tool. Oh, yes, at a somewhat older and cleverer age, it was eventually put to clever use: if you typed F, U, C, K and hit "play", you couldn't legitimately be punished, because the *computer* said the bad word! But in the beginning, it helped reinforce the associations between letters and sounds, and led to a lot of worthwhile experimentation on the keyboard.
Establishing a living, growing repertoire of expressive communication capability is so important... a child who can express needs, wants, joys, fears, discomfort is so much more likely to develop *constructive* adaptations rather than maladaptive behavior. You're right on target to be paying attention to this and to try to find the best way for Liv to communicate. It really is Job 1. And you're right to be looking at multiple modalities. The best modality for her may change over time, and it may not be any one thing for any given stretch of time. Best wishes with this, and to Liv, whichever way(s) she finds to work for her to communicate constructively.

-- Phil Schwarz, Jeremy's dad, reminiscing about how things were all those many years ago. (Now he's 17, in a high school program for autistic teens, working a part time job and working on academic goals to earn a high school diploma. He's as autistic as the Pope is Catholic, but it's a whole different ballgame than it was when he was Liv's age. Slow and steady is the way to proceed...)

KateGladstone said...

I worry about PECS because I have heard from people who grew up on it, who eventually learned to talk, and who reported how incredibly frustrating and dehumanizing they'd found their PECS years ... because PECS makes it so darned easy for parents/teachers/therapists to simply remove the cards for things they don't want their children to say!

A couple of weeks ago, in fact, at a special-education resource-fair near my home, the people selling PECS made a big deal about this as an "unbeatable advantage" of the system: "If the PECS user says 'no' when you would prefer him to say 'yes', you can simply take away the "no' card. If the PECS user complains about things at times, and this annoys you, you can simply take away the cards for all the concepts like 'I don't like ____ ' and 'This hurts' and 'I feel sick.'

(So what happens when the PECS user needs to communicate some concept like "My therapist hurts me" and the abusive therapist has prudently removed the "hurt" card?)

Ettina said...

"If the PECS user says 'no' when you would prefer him to say 'yes', you can simply take away the "no' card. If the PECS user complains about things at times, and this annoys you, you can simply take away the cards for all the concepts like 'I don't like ____ ' and 'This hurts' and 'I feel sick.'"

That's a very serious problem. It seems like a lot of people want to get autistic people to talk, but they don't want to have to listen to them. I don't understand it.
I read a book recently where one mother was talking about her daughter saying 'can you look into my head and see if there's any autism left?'. I felt so sad for that kid, feeling like there's something wrong with her that needs to be eradicated, but her mother was just using this as 'look how good her speech is now!'

KateGladstone said...

And just how would a PECS-user communicate the concept "I have been raped"?

As far as I know, no PECS card set includes cards for "rape" or "incest" or "pedophilia."

Someone who had a taste for sex-crime could get away with it for years by becoming an "autism communication therapist" and putting people on PECS -- or becoming a "personal care aide" in an agency whose clients included PECS users.


I personally view PECS as a means to another end, namely, some other electronic communication device.

It's hard for me to comment on the uses of PECS in older children, but you have to think that a child with ANY communications difficulties is at risk for those who seek to take advantage of situations though.

Since the concept of molestation is complex enough with a child with regular communication skills, it becomes even more difficult with a child who may not be able to convey confusion with your explainations.

I really need to revisit my thoughts on communication. Liv has recently moved away from PECS and has amassed a lot more signs. She still uses PECS for more choice-based communication, but even that is fading slightly...