From our (parental) perspective, one of the greatest challenges posed by the Bear’s autism is the resulting communications difficulties, specifically, our inability to always understand what she wants us to know and understand. The Bear (again, our daughter’s nom de net) is a very happy and good natured child (boy did we luck out – my parents want to know how this trait skipped a generation), and we have yet to experience a tantrum or meltdown of any sort (obviously we do get tears on occasion, but we’d be worried if we didn’t). I recognize that meltdowns can result from sensory overload, which doesn’t seem to be an issue at this point (touch wood – hand to head), but rumor has it that they can also result from the sheer frustration at the inability to make oneself understood. One of our goals as parents is to enable the Bear to communicate to the point that this level of frustration never arises.
Given that she does not speak (although she produces a host of sounds, some of them incredibly cute), and currently does not read (to the best of our knowledge, anyway) or write, this is a challenge. She is getting quite good at gesturing, and is quite capable of taking my hand and leading me to where she wants me to go, directing my hand to the object she seeks, or asking to be picked up, etc. But gesturing is not always an option, and something more is required.
We – or more accurately, our IBI providers - first introduced PECS, or Picture Exchange Communication System, to help fill the gap. PECS is quite literally what the name suggests. The student can exchange one or more pictures with another person to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. The IBI providers said that “we know that she has preferences, so we started using pictures as a way to get her to tell us what they are.” She caught on quickly, and we all decided to adopt this as a means of communications everywhere.
The PECS methodology has seven phases:
1 – teaching the student to initiate communications by exchanging a single picture for a highly desired item
2 – teaching the student to be a persistent communicator, to actively seek out their picture and travel to someone to make a request
3 – learning to discriminate between pictures and selecting the picture that represents the item they want
4 – learning the use of sentence structure to make a request in the form of “I want ____”
5 –responding to the question “What do you want?”
6 – learning to comment about things in their environment, both spontaneously and in response to questions
7 – vocabulary expansion, using attributes such as size, shape, and color in requests.
We’re not rigidly following the methodology, but are using it as a guide. The Bear is currently finishing phase 2. We’ve started PECS at home, with assistance from our SLP and a PECS specialist from the regional Special Needs organization, and have been very successful so far. We were quite surprised at how good the Bear already was at using it.
To assess her level, the SLP, PECS specialist and I sat her in front of a Teletubbies DVD (the Bear obviously gets her taste in videos from her mother), and then stopped the show. She looked around, and then gestured to me, and we started the video again. Then we put a card beside her and stopped the show. When she reached to gesture to me, the PECS specialist guided her to pick up the picture and hand it to me. No issues. Very quickly though, she showed what she could do. Working with the PECS specialist, within a few more trials the Bear showed that without any hesitation she could retrieve a binder out of arms reach (she had never used a binder before), tear the PECS card off of the velcro, walk across the room to the PECS specialist - who was deliberately ignoring her – and get her attention, grab the specialist’s hand and flip it over, and put the PECS card in her palm to request the show. She could do this consistently. We were quite surprised at her ability and her persistence, as we were deliberately being as uncommunicative as possible see how she would react. As the specialist said, you can’t teach persistence. The child has to want top do it. And the Bear clearly wanted to communicate.
To finish phase 2 we need the Bear to demonstrate that she can hand the card to the correct person, i.e. the one to whom she should be making the request at that time. This seems to be no issue, so it is on to phase 3. At this point we need to teach her to select the right picture to represent what she wants to communicate. Techniques include selecting from a choice of the correct card versus a blank card, and then choosing between two (and then more) non-blank cards. Given that she is currently scrutinizing the cards we think that she will grasp this reasonably quickly.
One of the things I like about PECS is that it follows the Bear’s lead. It is up to her to initiate the interaction on an ongoing basis. It is her way of communicating with us. At IBI they currently use it for her to request her ‘milk’, snack, books, access to the play room, etc. At home we will be using it pretty much for everything she might want to communicate with us. The beauty of it is once she has grasped the concept of discriminating between pictures, we can use pictures of pretty much anything. By putting words underneath the pictures there is evidence that PECS can help children learn how to read. By fading from photographs to symbols (we currently use a mix of both) we can introduce more symbolic concepts rather than just tangible items. And there is some evidence that the use of PECS helps children to learn to talk. While this last point is a goal, regardless of whether she learns to speak we see PECS as giving her a ‘voice’ sooner, rather than later, until she can learn to read and write.
So far, our experience has been entirely positive. One day in the not too distant future the Bear will be able to use PECS to give us her thoughts, but given the speed at which she has taken to it, I’m guessing that she will endorse PECS too.