I’ve always felt that the key to lessening the impact of autism on my son’s life, was speech therapy. (I’m not alone in that opinion, it is apparently the most used of all autism therapies). A good proportion of the meltdowns and misery he experienced were due to not being able to tell me what he wanted, and me not being able to tell him what was going on. It’s also very hard – and potentially futile – to discipline a child for their behaviour, when you don’t know whether the behaviour is caused by fear or anger or confusion; so many aspects of the challenges caused by autism can be worked on once there is some sort of language in place. But what form should that language take, when speech is extremely delayed, and will possibly never eventuate? And how can you be sure that the alternative form of language you are introducing to your child, won’t in fact hinder the development of spoken language?
These are the issues I’d been trying to get my head around, when our son’s speech therapist recommended trying PECS. PECS stands for picture exchange communication system. It’s a very popular and well-regarded method of introducing language to an autistic child, backed with good evidence of efficacy.
Still, I had concerns about how introducing a picture-based communication system might deter my son from learning to speak. How many times had I been told by other mothers, that he would only learn when faced with frustration as his teacher – wouldn’t a picture based system that lessened the frustration, undercut the desire to gain verbal language?
Frustration as a teacher, makes sense when dealing with a child who doesn’t have autism. I suspected this before, but now with such a child as my second-born, I know it to be true. My youngest (not autistic) son gets frustrated at what he can’t do, then works endlessly to figure out how to do it. My eldest (autistic) son wouldn’t even try new things; he’d just do the old and familiar over and over, all day if he could. When showing him something new (if I could get him to take an interest at all), the frustration that came from not being able to do something would either drive him completely away from the task, or drive him towards a meltdown. Persisting with a frustrating task could even create whole new anxieties and fears in him that I’d then have to battle for months afterwards. So no, frustration in itself is not a great teacher for autistic children.
Furthermore, there is no guarantee that frustration – or anything else – will lead an autistic child to eventually develop speech. They might remain non-verbal. Because of this possibility, it makes sense to present them with an alternative form of communication, not to just hold your breath that years from now they’ll naturally “catch-up”.
I was also concerned about whether PECS was the best alternative communication system. In particular, I wondered whether something like sign language – which I and others were more familiar with – would be better. Part of the beauty of PECS is that it transcends any particular language (english or otherwise), since it’s visual. As sad as it is that sign language isn’t more widely used and understood, the fact is that using pictures to represent what you want when dealing with strangers, is going to be more accessible and successful.
Even more important than that though when trying to decide on an alternative communication system to speech, is the fact that PECS works so beautifully with the autistic brain. Autistic people are highly visual learners and thinkers. Some of the more remarkable and beautiful aspects of the way autistic people interact with and understand their world, are tied into this heightened/different “visualness”.
It’s important to realise too that PECS is not simply an alternative form of communication, it is supplemental. The picture cards are used at the same time as spoken words, and there are words written on the cards, reinforcing both verbal and written language. Evidence has shown that rather than replace verbal speech, PECS actually enhances and progresses verbal speech.
After I’d done all my thinking and researching and talked it through with the speech therapist, we started using PECS with my son. It’s a system that does need to be learnt – you need to do it the right way; doing it the wrong way or going too fast, can teach confusion and lead to having to “unteach” what was taught to the child. So you have to be committed to giving it a proper go. You also have to accept that once you’ve started using the system, it is considered unethical to take it away from the child; like taking away their ability to communicate.
PECS does require a lot of materials – picture cards, folders, a filing system of sorts, a lot of velcro, etc. If you’re lucky, you’ll have this all supplied by the speech therapist (like we did). If that’s not an option available to you, you can keep costs low by doing things like sourcing pictures from free online sites or drawing your own.
I do credit PECS with being the prime force behind my son moving from single words, to his first ever sentences. It also of course expanded his vocabulary, and made his words more correctly correlate to items (instead of being quite so random). And – very importantly – it had a significant impact on the number of meltdowns he had each day, since he was now able to better tell us what he wanted, and we were in turn able to tell him if something wasn’t available.
My son no longer uses PECS, but it’s all still there in a box under his bed, if he ever wanted it. He is very verbal, though he still has a very long way to go before he’ll even have the eloquence a three year-old preschooler (he’s now five and a half). He’s still hard to understand sometimes, still uses odd and often confusing sentence structures, but he is able to make himself understood most times, and to understand very much of what I say to him too. Of particular note and importance, he is constantly improving; his repertoire of words is ever-growing, and the sentences he comes out with keep getting better. It is that progress which was lacking prior to PECS. PECS was like the key that started the engine, and he’s been humming along ever since.
(If you’ve tried PECS, or are trying PECS currently, I’d be very interested in hearing your experiences and opinions too.)