To PECS, or not to PECS

Autism

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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.)

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22 Responses to To PECS, or not to PECS

  1. Melissa says:

    I agree wholeheartedly with you regarding the speech being a key to the castle, as it were. At around 2, my daughter was not talking at all, we really had no idea what she knew… her teacher at the time recommended these flash cards, mainly for receptive language. About the 2nd time I used them with her, I could say “where’s apple” or “where’s dog” and she’d pick it up. THAT astounded me, and it was then that we knew that she knew a LOT more than she could say.

    It was also right around then that was started PECS. We hadn’t previously for a few reasons, one of which was her lack of pointing. We really didn’t do it as intensively as some people do because my daughter’s speech HAS begun to come as well. And I find that she very quickly will revert back to either signing (which was one of the first methods she used) or use of pictures when speech isn’t coming easily, or when she’s frustrated. We do use it as more of an augmentative. I, honestly, am OK with having a variety of communication techniques in her world as long as she has an option to communicate. We’ve actually, most recently, gotten an iPad. I like the options for visual schedules and some of the augmentative communication/ABA apps. And also, just portability is a really big plus.

    • Thanks for sharing that Melissa.

      I’m interested to see you mention the iPad – the teachers at my son’s special needs class use this with their students (especially the autistic ones) and have found it a very good resource. I’ve thought about getting one for at home, but haven’t done enough research into iPads yet to make that decision.

      And I do agree with the notion of introducing and using a variety of communication techniques (time and money allowing!); you’re right that the focus must always be on providing the child some way to communicate – whether that’s sign language, PECS, writing – whatever the child responds to and can use. (An aside thought: Even as verbal neurotypical adults we use a range of methods of communication; we adapt to the needs of different situations and different people as required, it makes sense to provide our children with the same versatility.)

  2. nostromo says:

    Our house is awash in PECS symbols. We make our own, we have lots of pictures that we have taken with digital cameras and we laminate them. Symbolic ones i.e. line drawings, representations we find off the web.

    Its working well for us, been doing it maybe 4 months. Our son is expressively non-verbal, well he used to have some words, but doesn’t use them now. We are just beginning on trying to move to sentence structure, so we now have an ‘I want’ symbol and are trying to show him that what he wants needs to go after that.

    Its a very useful thing, it’s given him a communication method to tell us what he wants; which in his case is essentially a wide variety of food stuffs plus water. Also has been used for activities like the Trampoline. Persistence has been key, and following the PECS manual. And responding to and honouring his requests. Therefore there has been more thn quite a few ice creams for breakfast!
    He’s the sort of kid that if we didn’t respond to his motivation – which is not high he is a ‘passive subytype’ – then he would stop using the communication method.

    • That brings back memories, particularly in regards to the meet-every-request stage.

      Our son has had ice-cream for breakfast many times, but independent of honouring PECS requests – that was back when he wouldn’t eat anything else! Thankfully his favourite primary food right now is Baked Beans, a big improvement on obsessing over ice-cream :)

  3. sharon says:

    I think the idea of frustration as a way to motivate is understandable but misguided, Children are motivated by positive reinforcement more than negative. If we can give kids the means to communicate via PECS and they are rewarded by getting their needs and wants met that is a much more powerful reinforcer.
    I have an admission. Our therapist uses PECS with Harri, but I am really slack with it as he is quite verbal. I cringe every time during his ABA sessions she pulls out the PECS becuase I am fearful he wont know what to do with them and she will realise we havent been as strict with it. But he always remembers, like you say, their visual memory is so good.
    I also agree that sign language has limitations as most people dont use it.

    • Autistic kids do seem to respond much faster and better to positive reinforcement over negative – it’s more intuitive, easier to comprehend (and a hell of a lot more pleasant for everyone involved). I think the idea of frustration as teacher can be considered somewhat discretely from the idea of positive vs negative reinforcement, in that it is just the nature of experience and experimenting. A neurotypical child enjoys new experiences (as a general rule), whereas new experiences need to be fore-warned and broken down into managable chunks, for an autistic child to be willing to give them a go and learn from them.

      I must confess too that there were times I hadn’t been keeping up with the PECS learning schedule, and felt like a child who hadn’t done her homework when the speech therapist would come visiting to work on the PECS with us! I eventually got into the habit of deliberately working it into a daily routine, to make sure we weren’t simply relying on what he learnt during those sessions.

      Such a shame really that sign language isn’t more widely used and understood. Here in NZ it’s one of our “official languages” (as I’m sure it is too in many other countries), and we were taught some in intermediate school, but that was about it. I always thought it was a lovely form of expression.

      • Melissa says:

        A short note about signing. From my experience with using it (and this greatly depends on the child, of course) it’s a great mode of communication, but can also cause great frustration. To start with, and until my daughter started imitating a few signs on her own, there were a few that were focused on – i.e. “more”, “give me”, “eat”, “music”… When she got these, “give me” became incredibly frequent, which we were thrilled with… but give me what? She’d walk over to a shelf or cabinet and sign – and we’d be left scrambling.

        My daughter’s ABA therapist offerred that more concrete signs of say “milk” or “water” vs the abstract “give me” would have been good to use. And caused less frustration. It’s mostly a difference in approach.

    • KDL says:

      I agree with this point. We have found the key to making progress with our daughter in every area is to help her stay as “regulated” as possible in each environment. This means reducing frustration. It’s a balance to keep from then capitulating to every request she makes…but the importance of helping her get past frustration with “just right help” has been essential.

  4. sandrine says:

    When our son started speech therapy, we didn’t yet know he was autistic. But the therapist used a lot of drawings. Whenever she introduced a new word, she would draw a picture and Max would colour it. Very quickly he started to reproduce the pictures himself and practice the language that went with it. The speech therapy really helped. He learnt to speak Turkish first (we live in Turkey but speak English and French, and very little Turkish, so that wasn’t ideal) and then French. He’s now picking up English. But what also really helped him was the relationship he developed with drawing. Long before he could express his fears or hopes through language, he would do it with pictures. He drew himself through a fear of baths and showers, for example. Then we discovered social stories, and we started drawing things he would have to do as a way to help him through them. Then he started doing it to. Drawing pictures of things, people and stories has been an extremely rich experience for us all. At least as important as the speech therapy – but not an alternative to it.

    • Wonderful story, and an impressive child! We use social stories a lot too, and have also found them very positive and helpful. I love the way your child adopted the drawings as a coping and learning mechanism, very special and clever :)

  5. Jack says:

    We started with PECS with our son, he took to it like a duck to water. Going from single words, to the ‘I want” and item. His verbal has started to increase and like what some others have said we have dropped PECS from everyday use. Our son still goes to the PECS folder and gives us ‘I want’ ‘car’/’shopping’/’biscuit’ if he really really wants something. We tell ourselves we should use it more, but hearing him try to talk is so exciting.
    I saw Melissa mention using an ipad. Our speech therapist has suggested that we could use this as well or an ipod. I’m a bit hesitant cause I know how much my son loves technology. I could see it being something he would fight for control over. But I suppose we could use the built in timers to limit its use. Would like to know what others think.

    • I’d be interested to hear more about what others have to say about the iPad too. I’ve read a few blog posts and news pieces about its use with autistic children, almost all were very positive (one was neutral, but none were negative). I haven’t read an individual’s experiences with it yet though, just more generic reports about how it can be useful, and has been used in various organisations.

      And yes, it really is wonderful and exciting when the talking starts to kick in. Beyond words :)

    • My son’s special needs school has a blog that lists the iPad applications they use, and which talks about how they’re used and experiences with them. I thought you might find it worth a look: http://www.sommervillespecial.school.nz/

  6. mamafog says:

    Our ABA provider introduced PECS when my daughter was 2.5. She did not have the imitation skills for sign language. She took to them very quickly. She did not do very well in a drill environment with them, but she used them very naturally. We have a food book in the kitchen and a toy/activity book, and she would independently go and get the icon for what she wanted. At the time it was really life changing for all of us. The tantrums were reduced and she became much more engaged and interested in us

    Last summer at 3.5, she began to imitate both actions and words (sounds). She gradually used the PECS books less and less as she got used to being able to repeat the word/s for what she wanted. In the past month, we are finally hearing all those requests we’ve been prompting spontaneously. We still keep the PECS books out, but she almost never uses them. There are some moments of frustration when I don’t know what she wants, so I can’t prompt her to say a word. But often those moments lead her to actually spontaneously say something, or occasionally even point.

    We just got an ipad, and I’m sure I will get a PECS app for it, that was not my main intention for its use. It has only been a couple of days, but already I can see her learning new words from the flash card apps. She loves to see the pictures and repeat the words. There is something about devices like the ipad that compel her to speak.

  7. Melissa says:

    There’s an conference being given by ASHA at my daughter’s school centered around the iPad, iPod Touch & other AAC devices as well as Apps, features and challenges, counseling, etc. There are a few ABA apps, a few general preschool apps and learning apps as well as interactive books that we’ve picked up so far – but as far as ProLoquo or Tap to Talk or any of a dozen touch to talk programs…. we’ve decided to wait until after the conference and after speaking to her speech therapist.

    The other thing that we’ve found is that because of our daughter’s fine motor difficulties, dragging her finger along the iPad with the correct amount of pressure, or without hitting it with her nail is actually difficult for her. That may not sound like a big deal, but if you press too hard, your finger jumps/skips a bit and if you’re playing a puzzle game, things drop back to where they were… frustrating for ANY child, nevermind one whose frustration tolerance is naturally high (lately higher). Our solution was to buy a stylus, which simulates a finger tap. Originally she didn’t love the feel of the metal stylus – she has since gotten used to it.

    • Interesting point about the finger pressure Melissa. At our son’s IEP this past week, they mentioned that one of his challenges is that he doesn’t apply the correct amount of pressure when he’s writing, and struggles to grip and hold things in his hand, especially struggles with manipulating items with one hand. So it sounds like he would have a difficult time both with the finger pressure, and the stylus option. I hadn’t thought about that issue before, thank you for raising it.

  8. Christa says:

    As an ABA therapist, I’d just like to remind everyone that “negative reinforcement” does not actually mean subjecting a child to something negative. It means removing an undesired object, sound or activity. An accurate example of negative reinforcement would be when a child hears a vacuum cleaner, does not like the sound, and says, “stop vacuum.” Turning the vacuum cleaner off would then be negative reinforcement. Again, negative reinforcement is when something undesired is removed (i.e. the sound of the vacuum cleaner). Positive reinforcement is when something desired is presented. Hope that’s clear. Thanks.

    • That is helpful, and it’s true that most lay-people don’t use it in that precise manner, but I must say that it doesn’t equate with not actually “subjecting a child to something negative” (in your words). Using a negative stimulus that is not removed until the child complies with the request, would surely count as negative reinforcement (seen in example 1 at this link: http://www.mcli.dist.maricopa.edu/proj/nru/nr.html ). So, the pre-existence of the unwanted thing can be (and sometimes indeed is) introduced specifically to reinforce a behaviour, by its later removal. The important difference is when the bad thing occurs: If it’s prior, then it can count as negative reinforcement, if it is after then it would be termed “punishment.” I do think most people use it to mean “punishment” but again, that’s not the same as saying the child isn’t subjected to something negative.

      Please do come back and let me know if my explanation / understanding is flawed. Thanks.

  9. Grace Chan says:

    I would like to have more info on this my eldest is autistic she is unable to speak proper words but she understands what we say to her.

    • Grace, the best approach is to speak to your child’s speech therapist or other relevant specialist, tell them you’d like to investigate some more speech options, and bring up PECS as an example. In the meantime, you can always do online research to learn more about PECS, and there are books on the method too, but I ultimately suggest going through a professional to make sure it’s properly implemented and supported. Best of luck.

  10. Ruth says:

    I am an SLT working with young people with ASD. I think PECS is a fantastic tool. I tend to work more with non-verbal older children with ASD. I have attended the basic 2 day training and came back to school full of beans to set sail with it. It does take a fully on board team of people working with the individual to ensure they not only move through the phases but also develop generalised and consistent skills.

    I have begun to develop some young people on to using the iPad as a communication aid. I tend to do a joint assessment with the Occupational Therapist to assess an individuals ability to carry the iPad while using it, hold it, understand the skills needed to touch the iPad with the correct pressure etc. Once the OT is happy I begin to look at their skills to use the iPad, visual discrimination using the device, will they need an application they can create big symbols, only a few options etc etc.

    I have been using Proloquo2go and Sonoflex to move students on. Assessing the students needs and abilities before deciding on which application is most appropriate. I teach it in the same way as PECS with motivators and physical prompts – although some students fly through finding things themselves. I train all the key people in how to use the device and then monitor progress.

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