This article describes the authors believe that the picture-exchange communication system (PECS) is superior to other augmentative and alternative (AAC) approaches. It concludes that PECS training can help children with autism develop speech.
The authors begin by describing various approaches to teaching children with autism to speak, and discuss why they can be ineffective. For instance, some therapists have used picture-pointing systems, in which pictures are placed in front of the child, and the child must point to what he wants. These systems may not work for the many children who are inaccurate pointers at a young age. This inaccuracy results in the communication partner asking questions to figure out what the child wants; the child may then become dependent on these questions. Further, picture-pointing does not require the child to directly approach the communication partner. It thus fails to help the child develop the social skills that are crucial for communication. After outlining these pitfalls, the authors describe PECS, a system that the authors developed to avoid these problems. In PECS, the child learns to choose a picture and give it to the communication partner. The picture is used first to ask for something and later to comment on anything seen or heard in the environment. The authors describe the six phases of PECS training (described in the PECS fact sheet). They also describe additional training meant to increase vocabulary. They conclude by outlining the evidence that PECS training helps children with autism learn to develop speech.
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Orientation frustration
Apr 24, 2008 by AnonymousSomething happened to the apostrophe key on my keyboard. One of my darling little children seems to have pried the plastic apostrophe key off the board so now I have to press this green rubber nodule when I want an apostrophe or quotation marks. Such fun!
It’s been a busy week for us. I went to that kindergarten orientation that I was urged again and again to attend. We ended up leaving halfway through. It was basically a reiteration of what Jonathan and I heard at the special needs kindergarten orientation a few weeks ago, only this was in the middle of the afternoon and without complimentary childcare. I asked the principal if they were going to have an MLP classroom at our home elementary school and she replied that yes, they were going to have a bi-lingual MLP there. So most likely, Thomas will not be attending that school. She urged me to stay for the remainder of the “registration” - they handed us a flyer saying that registration would be in August. I was so ticked off! Like I’m going to hand over all the registration papers and monies so that the district geniuses can lose them when they transfer them to whatever school in Timbuktu Thomas will be attending. They lost all of his stuff last August and he wasn’t even changing schools! So I stormed off (the kids weren’t being great, which didn’t help) in a huff and the principal asked about Thomas before we left – like she’s going to do something about the injustice of it all. The thing that angered me the most was that the special needs kindergarten people who gave the presentation a few weeks ago insisted that it was of utmost importance that we all attend our home school’s orientation. It was completely unnecessary and I’m going to mention it at Thomas’ IEP meeting on May 6th.
So after walking to this school and playing at the playground and explaining to Thomas that he might go to school there next year, he’s not going there. The silver lining to this cloud is that the district starts school at 8:30 a.m. so Thomas will be on the bus and off to school in plenty of time for me to get Hayley to pre-school at 9 a.m. I have to register her on Saturday morning and then get her over to her make-up dance class at 10 a.m. Finally, Hayley will be able to start school and then, dare I even write it, I will have a couple of hours every Monday, Wednesday and Friday to myself to do “stuff.”
Thomas is still doing well at school. Yesterday, a police officer came to visit Thomas’ class. The kids got to try on handcuffs (Thomas refrained from that particular activity), sit in the police cruiser and listen to the sirens. Thomas loved sitting in the car and he was able to actually tell me the officer’s name when I asked! I said, “Thomas, what was the policeman’s name?” He said, “It was just ‘policeman’!” I explained that the officer had a name. “What was his name, Thomas? It was Officer…” And then he told me! I couldn’t believe that he could remember, but he did give me a plausible last name of the police officer. I thought that was great!
I’ve had it with the bed-sharing again. I finally had to mention “sleep study” again to try and whip things back into shape. Those kids come in every night now and I wake up sweating with someone’s (not Jonathan’s) elbow in my face and knee in my rear. I mentioned sleep studies in the bathtub tonight and Hayley said she’d like to do one. Thomas looked at her and said, “Hayley, you don’t know what you’re talking about!” Too true. We’ll see who comes in tonight.
So I’m waiting for that IEP meeting to hopefully find out where Thomas will be going to school next year so I can go to THAT orientation instead. Or maybe I’ll just show up the day before school starts with a greasy birth certificate, coffee-stained immunization records and a dubious-looking check to hand to whatever poor sap is behind the desk that morning. That may be what happens just because I bet they won’t know where the MLP class is going to be in early May. I just hope that Thomas doesn’t have to be bussed too far. Our school district is fairly large and sprawling, so he could have to ride the bus for quite a while every day, depending. I’m a little concerned about that.
I’m excited for Hayley to start pre-school and get some socialization at long last. I’m hoping they’ll teach her a little about how everyone is different and it’s not polite to stare, point, or loudly say, “Mommy! Why is that old lady’s hair blue?” (Luckily, that old lady’s hearing was apparently not what it used to be and I escaped that situation.) She’s just like every other kid when it comes to pointing at someone who looks different, walks differently or has any characteristic that doesn’t jive with Hayley’s definition of “normal” which is probably a bit skewed, to say the least. I’ve been trying to tell her, after we’re home or in the car, that it’s not polite to point or talk about how people are different when they can hear us. How do I do this? Does anyone have any words I can use that an almost four year-old will understand? If you read my blogs regularly, you already know that I have a tendency to get a bit wordy and use some goofy vocabulary. Unfortunately, I find myself doing that with the kids and I don’t notice so much when their eyes glaze over. Sometimes, Hayley will say, “Mommy? I don’t understand your words!” At least she can tell me when nothing is getting through.
The Manual! And my book came out in paperback today!
Nov 7, 2007 by dankohnDear friends,
Well here it is – finally. The Footnotes are missing and it needs some graphical tweaking but I thought I should get it up on the site as soon as possible even if imperfect. It took a long time to write and to get feedback and even now it is very much a work in progress. I hope it will be helpful and that you will send your comments and feedback and contribute the new things you learn and discover to be incorporated into the Manual as it evolves over time. Most of all: PLEASE SHARE YOUR VIDEOS!
Please share your videos as you get started (and upload video from before you started, AKA “Baseline videos”). And anyone who is already using this kind of method - please share your progress with the Community by uploading your videos! Everyone needs the inspiration to keep up their spirits and to believe that their kid will be able to do it!
We are at the beginning of a new era for our nonverbal and low-communicating children and it is up to us to observe, try things and to record and share everything we learn with each other. It is my greatest hope that we will change the way the world sees our children and open up a new life of possibilities for them through their ever-improving ability to communicate.
Last but not least, the paperback version of ‘Strange Son’ came out today. There is an Appendix in the paperback that consists of a scaled down version of the manual (because it wasn’t really ready at the deadline for submission last spring).
I am currently in Washington DC – Congress mandated that the Department of Defense fund autism research and I was selected as a “Consumer Reviewer”, that means I read the grants, write reviews and participate in the grant review meeting to weigh in on what should be funded. On Monday I will be at the Autism Speaks grant review meeting in Philadelphia doing the same thing and then I am going to Cold Spring Harbor to try to learn more about the new “copy variation” (genetic) findings in autism.
Best wishes to you all and please keep me posted, -Portia
PS Because it will be updated frequently, please be sure to watch for new, updated versions of the Manual. You’ll find it at: www.strangeson.com to the left, under “Portia’s thoughts on pointing”.
Still on my plate
Sep 30, 2007 by AnonymousWe’ve been so busy that I just haven’t had the energy to write lately. At night, I just want to hang out in front of the TV or escape into the world of Harry Potter for a while.
Last week was very busy for our family. Thomas had that video EEG on Wednesday and Thursday so he missed school those days. He was actually very good for the test part which consisted mainly of just hanging out. The hook-up and un-hook was very traumatic for us and Thomas especially. Jonathan had to hold him down while the EEG technician super-glued twenty-four leads to Thomas’ head; each lead taking approximately one and a half minutes from start to finish. It was awful. Thomas was freaking out, and the nurse who was putting these things on Thomas seemed extremely frustrated with him. He kept screaming “Ow! It hurts! Mommy, help me!” He certainly knows how to play his mom! The “Mommy, help me!” thing went on for quite a while. I cried intermittently. But the nurse, despite Thomas screaming about how much it hurt, kept telling Thomas that it didn’t hurt, there was no “ouch,” no boo-boo, etc. I was getting mad! How does she know how that super-glue and air-gun combo feels to Thomas? No, there weren’t sharp needles and certainly nothing that would hurt an average person, but to Thomas, that air-gun thing and the acrid smell of the glue might have been torture.
During the testing part, especially after hook-up on Wednesday, Thomas was really good. Because it was a video EEG, Thomas was on camera the whole time. A nurse/technician was in the room with us from beginning to end making sure that the camera was pointing at Thomas every second (except in the bathroom). He stayed on his bed most of the day and was very well-behaved. Nice volunteers kept coming in to bring toys and movies for Thomas and he was very pleased to learn that this whole test thing included all the chocolate ice cream he could eat. And he ate plenty. Whenever he seemed to be getting restless or antsy, we’d run to the freezer and get a little ice cream cup. It worked really well. He had ice cream with every meal and for every snack.
During the night on Wednesday was the really important time for the test since it is Thomas’ sleep problems that brought us to this point initially. We were not allowed to give Thomas his sleep medication, so he was up until 11:30 p.m. He got up a couple of times in the night. He tried to crawl into my recliner at 4 a.m. but it was too small for both of us, so I got into his hospital bed with him. We stayed there until he awoke at 6:30 a.m. That was when his breakfast came! Is it just me, or is 6:30 in the morning way too early for food service employees to be bringing clattering trays of lukewarm food into children’s hospital rooms? Anyway, that’s what woke Thomas up.
In addition to keeping the camera trained on Thomas, the attending technician also kept a log of Thomas’ activity every few minutes or so. When we woke up on Thursday morning, I looked at the log and noticed that the computer recorded two “events” during the night. One was at 12:30 a.m. and the other was about two hours later. These are obviously neurological events, so I’ll be eager to hear what the doctor has to say about them. We have to wait two weeks for the doctor to review the test and call us back.
While Thomas was being really good on Wednesday, Jonathan’s mom came to see him. Thomas sat in his bed and talked for nearly two hours, nonstop. It was exhausting for us to listen to, but it was so funny too! Jonathan finally realized what was going on with Thomas; since he was tethered to a machine and unable to go very far, he was getting rid of all his energy through his mouth. He would not stop, I tell you! It was really funny and interesting. I knew Jonathan was right…I couldn’t believe that Thomas was being as still and well-behaved as he was, yet his body had to find some way to expend the pent-up energy. Thank goodness he decided to talk it out.
The frustrated nurse came back again on Thursday to take the leads off Thomas’ head, and this experience was almost as horrible as putting them on. They put mineral oil or some kind of spirits on his head to dissolve the glue (non-acetone nail polish remover, I think) and Thomas was not having any of that. He freaked out again, but at the end of it the leads were off instead of on. We rinsed his head and Jonathan took him to the play room down the hall while I waited (and waited and waited…why are hospitals so slow to discharge patients?) for the nurse to give me discharge instructions. Every time I have been in the hospital, I seriously consider just walking out after the doctor gives me permission to go home. What were we waiting for? Thomas was not sick, not post-operative and had no wounds or dressings or fevers that needed care …why do we have to wait forever to be officially discharged?
Of course we didn’t just walk out. We waited around for the very important instructions that told us that Thomas is on a “normal” and unrestricted diet (knew that) and can resume normal activity (knew that, too). Thomas was very glad to be home and just this weekend got rid of the rest of the glue in his hair. I’ll make sure to let everyone know about the results when we receive them.
Thomas and Hayley had a fun weekend! It started on Friday night when the Cubs clinched the National League Central division title! Woo-hoo! My sister and her fiancé came over to watch the game and we had a great time. Saturday, my mother-in-law picked the kids up and took them to her friends’ ten-acre property for the big Hayride and Bonfire Party that they have each year for everyone’s grandkids. Thomas and Hayley went with their cousin and Jonathan’s cousin’s son. That meant that Jonathan and I had some time to ourselves to remember what it was like before we had kids. We didn’t do much. We bought a movie at Target and brought it home to watch. We baked an apple pie and I did a lot of painting (we’re re-painting most of the rooms in our house). Very exciting, I know. But it was so quiet! It was so peaceful! Then the kids came home this afternoon just as the Bears were officially losing the game against Detroit and thus ended both the quiet and the peaceful. Especially for Jonathan. I never realized that a football game, either won or lost, could so greatly affect the general atmosphere in our home. So alas! Another week of grumbling and head-shaking. Thanks for nothing, Bears!
Thomas’ teacher called us yesterday. She mentioned that Thomas is the highest functioning child in her class as far as language is concerned so she wondered if it would be okay if he spent some time in another classroom with kids who can help him learn some of the nuances of social language. Apparently, there’s not a lot of talking amongst the kids in Thomas’ class and his teacher (and the principal, with whom this was discussed) wants to challenge him a bit more and help him really progress this year. I was very happy to hear that from her since I’ve been a little disappointed in Thomas’ curriculum so far. The first week was all about colors. Great, but Thomas already knows his colors. The next three weeks are about shapes. I’m a little more on-board with that, since Thomas could use practice drawing shapes. But still, he knows a lot of shapes. I don’t really want this year to be a review for Thomas; it has to be a little more challenging so that we can really prepare him for kindergarten. I never really understood the reasoning behind Thomas’ class-placement this year anyway. There are no other autistic children in his class, but there are at least two kids with Down Syndrome and other varying disabilities. I’m not sure what this means. I know that Thomas is one of the oldest in his class, but I don’t really understand anything about why this class was chosen for Thomas. Duh…maybe I should ask!
So Thomas will go to spend play time in another teacher’s class just a couple of times a week at first. Depending on his response, they may take him there more often. I’m very interested to see how that goes and if it helps Thomas with social language skills. His teacher said that the “demographic” in the other classroom is mostly kids with slight to moderate language delays. I’ll make sure to let everyone know how Thomas responds to this new routine.
I was really dreading the video EEG thing, but now that it’s over I feel like things are calming down a bit. The first half of the week is usually a little hectic for us with Hayley’s dance class and Kid Rock. We’ve been doing okay with the dance class so far; Jonathan has been home by 4 p.m. the last two Tuesdays in a row so my sister Tina didn’t have to come and take care of Thomas for us. We’re having our windows replaced sometime in the next three weeks and I really want to get the air vents and ducts cleaned before winter hits, and the bedroom carpeting…I always feel like I can only have a few tasks on my mind at a time and no more than that or something will have to give. The EEG is off my plate, but depending on the results, there’s a good chance that I’ll have to take Thomas in to see the doctor soon. I can’t really file all of that away until I have the results, if any. If any medical professional says the word “inconclusive” in reference to that EEG, I’ll scream. You’ll probably be able to hear me from there.
About Reading and nonverbal/low-communicating people with autism
Aug 1, 2007 by dankohnIt seems likely that many if not most nonverbal or low-communicating children with autism can read by the time they are six or seven, sometimes earlier – even when no one has taught them and even when no one knows they can read. I have observed this time and again and professionals who work with nonverbal children/people with autism using literacy based methods have confirmed this observation. It is hard to imagine the concept at first - that a person could know how to read and yet not know how to communicate, but it turns out that it is probably somewhat common in this population.
Recently a member posted on my community forum (www.strangeson.com) about reading and how colorful picture books kept her child’s visual interest. I thought I would share a few thoughts on this and in particular differentiate between a child/person’s visual interest and auditory interest in books.
There are several ways a child/person you are working with can respond and relate to books. Visually stimulating types of books designed for very young children can capture visual attention and they can be fun and useful for keeping a child/person focused on a visual target (in this case the pictures in the book) and this can be used for social interaction as I will describe below.
For educational purposes on the other hand, we need to remember that many nonverbal children/people with autism are very reliant on their auditory system for learning. I remember asking Soma when I first met her, how she got the idea to read books aloud to Tito when he was little, even though he showed no outward sign of paying attention to her words much less understanding what she was reading. She called it “listening behavior” and explained that he could have left the room, but he never did. I realized when she told me that, that when my husband read Harry Potter aloud to the kids and Dov was running around the room, making sounds and stimming and acting like he was paying no attention – he never left the room either – and he could have. Most of us think that “listening behavior” consists of sitting quietly and attending to the pages of the book, but Soma taught me that not leaving the room was listening behavior too.
Later, when Dov began to communicate, it turned out he had been listening all along and he could answer all kinds of questions about Harry Potter from when his Dad used to read it aloud. You can read a few sentences or a paragraph of age-appropriate material, whether from a teen magazine or the newspaper or a book and then ask a question and use multiple choices to get the answer, then read some more. If the child/person stays in the room – you can be pretty sure he/she is listening, even if he/she displays none of the behaviors such as sitting quietly and looking at the pages.
It’s gotten to the point now that Dov knows it bothers me when he starts stimming too wildly while I am reading to him, and so when he does it I just stop reading mid-word and give him a quick look and he stops immediately – because he loves to listen to someone reading out loud! Then I resume reading immediately. Now Dov can sit for hours listening and answering questions and asking them too and I’m the one who usually tires out first.
But Dov also still loves to look at his favorite, visually exciting type of books with high contrast colors and designs, and sparkly illustrations; books for very young children. These kinds of books definitely still capture his visual attention and when he is paging through one of his favorite “visual” books, sometimes I take the opportunity to talk about the pictures with him, and discuss what he likes and why. Dov can spell out a word, phrase or sentences about the pictures in these books but in the beginning we often used multiple choice and even now, if he is tired or having a hard day, we might still use multiple choice sometimes.
An example of how you can use multiple choice with a picture book to turn visual fascination into communication, you could ask: “I see you like this page. What do you like about it?” then I quickly jot the choices on a clipboard: “the way it looks?”, “the way it feels?”, or “both” and “something else”. (I always include “something else”) If he/she chooses “the way it looks” you could ask: “What do you like about the way it looks?” and offer the choices: “the colors?”, “the sparkliness?”, and so on. You could also ask him/her to show you the part of the page he/she likes best (by pointing) and then talk about that, ask more questions, and so on. This is a fun activity and it gives you a chance to share something the child/person likes and have an interaction about it - which most kids/people with autism don’t get a chance to experience often enough. But it is also a completely different kind of activity than reading a book for the sake of learning about something and/or for the literary enjoyment.
Both kinds of activities are very valuable. Enjoy!
Best wishes, -Portia