Archive
Webchat on Promoting Language, Learning and Engagement in Toddlers and Preschoolers
Thanks to all who joined us for today’s “Office Hour” webchat with our Chief Science Officer, clinical psychologist Geri Dawson, PhD. Here’s the full transcript.
Thursday December 1, 2011
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Exciting Times in Early Diagnosis and Treatment
Posted by Brooke Ingersoll, PhD, clinical psychologist, Michigan State University, East Lansing, and the recipient of an Autism Speaks 2011 Treatment Research Grant
We now diagnose autism spectrum disorders (ASDs) between the ages of 2 and 3 years, when symptoms become obvious. But over the last five years, we’ve been actively studying how to identify ASD symptoms in younger children, with the hope that earlier intervention can produce greater improvements in outcomes.
I was recently invited to write a review of these research efforts for the scientific journal Current Directions in Psychological Science. I’m excited to relate these findings to our families and friends as well:
In essence, the evidence is strong that many children who go on to a clear diagnosis of autism are already showing fewer early social and nonverbal communication skills at 12 months than do typically developing babies. These “missing” behaviors including imitating, showing objects to others and pointing to objects or events in the room.
My review of the research also showed clear evidence that targeted therapies can improve these early skills in young children with ASD —and might also produce improvements in other, later-emerging skills such as language and more mature social interactions. Despite these advances, much remains unknown about the early presentation of ASDs and the best way to intervene to improve these children’s outcomes.
While it is wonderful to see that we can identify and help very young children, I feel strongly that we must also increase research and improve therapies for older children with ASD. My current work, recently funded by an Autism Speaks treatment research grant, is evaluating the benefits of an intervention called reciprocal imitation training, designed to increase social engagement in adolescents with ASD and limited language.
With this intervention, we encourage non-verbal social behaviors such as imitation, gestures and eye contact. The intervention is adapted from social communication therapies that have shown success with young children with ASD who have not yet learned language. The early results have been encouraging, and we are very excited to continue this work in an effort to identify appropriate social interventions for older, nonverbal individuals with ASD.
Read more news and perspective on the Autism Speaks Science page.
In Their Own Words – Matthew’s Talking Dream
This “In Their Own Words” is by Debbie Simon Pacholder. She and her husband, Tom, have three children. Their six-year-old son, Matthew, has autism and is non-verbal.
I am home on a Saturday, in the kitchen, with all three kids buzzing about. Allison and Shannon, our two-year-old twins, are teasing each other with their favorite bunnies. Tom, my husband, watches them and laughs. Matthew, our six-year-old, is at the refrigerator. He touches the water dispenser with his finger, then suddenly turns to face me. “Mom, can I please have a glass of water,” he asks, slowly and distinctly, carefully looking me in the eye.
Instinctively, I head toward the cabinet to get a cup. Then, it hits me. My son has spoken – and not just “no”or “yeahhh.” My son has uttered a full sentence! MY SON HAS UTTERED A FULL SENTENCE!
“YAY, Matthew!” I shout, flooded with happiness and relief. He smiles sheepishly and accepts my hug. “Did you hear Matthew; DID YOU HEAR HIM?” I shriek. “He just asked me for a glass of water!” His voice is so full and beautiful. I think, this is what winning the lottery must feel like.
Tom is too surprised to form words, but the girls circle around Matthew and touch him, like he’s a rock star. “Yay, Boy!” Allison sings. “Matthew, talking! Matthew, talking!” Shannon says, and flings her arms around him. He smiles only slightly, but his deep blue eyes are alight with excitement.
Fast forward to the next day. I’m at school, with all three kids. I’m afraid. Afraid Matthew will stop talking, that the day before was just an anomaly. Yet, he’s speaking. Words. Phrases. Sentences. He’s had a breakthrough; he’s come out of it. I hold my breath.
“I strongly recommend you send all three kids here next year,” the director tells me, while they play nearby. She nods her head toward the twins. “They’re doing incredibly well – and I see how much they have been able to help their brother.” She glances at Matthew, who’s playing with a toy truck, appropriately.
I’m about to answer, but something stops me. A sound. Click! The safety gate to Matthew’s room. He’s up, and it’s 6:00 a.m. Rudely, I’m jolted back to reality: I’d been dreaming all along.
Not that I should have been surprised. I’ve had this dream before, the Matthew’s Talking Dream. In the last one, we’re in a room with only a TV, and he tells me he wants to watch Frasier. Totally random. But this one is different; it mimics reality.
Matthew has put words together in real life three times. First, when he was two, at the Noah’s Ark pool – a water Disneyland for toddlers. We’re at a birthday party. Matthew’s playing in the water, which churns like a hot tub, when it suddenly becomes still. We whisk him out and head toward the pizza and birthday cake. “Go back!” he shouts quickly. We’re stunned.
Next, Matthew’s four, and swimming. His instructor, Gina, shows him how to dive in the water for the toy fish she leaves at the bottom of the pool. She’s talking, and Matthew shifts his feet from one side to the other, impatiently. “I got it!” he exclaims. Did I hear right? I look at Gina for confirmation. “He said it,” she laughs. Matthew looks in my direction, then focuses on the water, like it’s no big deal.
The next week, more instructions from Gina. “I’ll do it!” Matthew says. “I can’t believe it,” I shake my head. “Clearly, he can talk.” “Yep,” Gina smiles. “He can.”
I look at Matthew. “I’m on to you, buddy,” I tell him. “Your secret is out.” He pretends not to hear.
That was two years ago. No phrases or sentences since. Not even in the pool. I try not to be upset, but I just don’t get it. Hours and hours of swimming, ABA, OT, hippotherapy, oral motor therapy, reflex integration therapy, and still no more speech. He’s way, way overdue, and I’ve told him as much.
Last week, we’re playing on his bed. He’s laughing and hugging me, like a typical six-year-old. I remember what one of his therapists told us. He knows how to do so, so many things. He’s just choosing not to.
“Matthew, I know you can do it,” I whisper. “You can talk to us. I want you to talk to us. You know Allison and Shannon won’t let you stay quiet for much longer. You’re going to have to make the decision to talk. I hope it’s soon.” He stares into my eyes, surprised. I stare back. He laughs – a deep giggle from his belly – then covers my mouth with both of his hands. I move them away and hold them in mine. “Think about what I said,” I tell him. “Goodnight … I love you.”
The next morning, he’s the first to wake up, and runs into our bedroom. “Good morning sunshine,” I say, melodiously. He looks at me and comes to my side of the bed. “Mommm!”
It’s not a sentence, but it’s a start.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
In Their Own Words – 10 Ways to Help Your Child with Autism
This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.” Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum. Lydia previously submitted a fabulous post called “Ten Things That I Wish You Would Accept, No Questions Asked.”
Between my blog and the parents’ message board I enjoy visiting, I get a fair amount of questions from parents. Should I let her line up her toys? Would going to his dad’s on weekends be too upsetting to his routines? What can I do to help her get through an EEG?
I always do my best to answer them based on what I would have needed or wished my mom would have done for me, keeping in mind how it will affect the child as he grows up. As I get more questions, and they start to repeat themselves, I’m seeing patterns. I thought I would write something for parents to answer some of those repeated questions, and if they still had more, they can always contact me.
These are in no particular order (meaning, as they pop into my mind), though I will number them 10 to 1. I will use the pronoun “he” for the sake of simplicity and statistics.
10. On a day when he is particularly hard to handle, make a list of the things you love about your child. Share it with someone (spouse, coworker, sibling, pastor, friend; if you’re still stuck, heck, I’ll listen). But how does this help the child? It reminds you of why you love him so much, reorients your attitude, reminds you of why you do so much for this little person. Your improved attitude will have a positive effect on your child. I promise, we can tell when you’re upset with us.
9. Allow your child a chunk of time to engage in or talk about his very favorite thing with you, completely unbridled. People with autism spend so much time either self-redirecting or being redirected, that it often feels like we never get to really dig into what we love without the accompanying being cut off or redirected. Personally, every time I talk about cats, it’s overshadowed by the nagging thought that Leigh or mom or sister doesn’t really want to hear about them. They certainly never ask about Elsie. So for a bit of time, just let him be obsessed. Obsess with him. Pretend that what you’re hearing is the most fascinating thing you’ve heard all week. This subject is where he shines, whether it be bus schedules, the early years of the Beatles, or Thomas the Tank Engine.
8. Label emotions for your child early and often. Last night, an unimportant but abrupt change in plans left me frazzled. First things first; I picked up my kitty. Then I said, “Mom. I’m upset.” No response. “Mom, did you hear me? I’m upset.” The words felt unsettling. “Mom, I’m telling you something. I’M UPSET!” It struck both my mother and I that this was the first time in … ever, maybe? … that I’d come to her and labeled an emotion without prompting and without just acting out. This should not have taken 22 and 7/12 years to happen. Don’t let this be the case for your child. Ask your child frequently, “How do you feel?” You may need to offer suggestions or options at first, but never stop asking.
7. Model, model, model. Rinse and repeat. Model language, dealing with emotions, and facial expressions. Over-exaggerate and explain, step-by-step, what you’re doing and why you’re doing. “Do you see that my eyebrows are pointing inward and how my mouth is puckered? My face is telling you that I’m angry.” “Hey, let’s get your new school shoes when we go to the mall to get so-and-so’s birthday present. People say that we’ll ‘kill two birds with one stone.’ That’s a silly way of saying we’ll get two things done with one action.” “Oops; I expected the ice cream shop to be open. It’s probably closed early because it’s a weeknight. I feel very disappointed about that because I was expecting ice cream from this shop. But we can either go get ice cream somewhere else, or we can wait until tomorrow. Which would you prefer?”
6, Limit choices. If your child takes an hour to get dressed in the morning because nothing feels right, step 1 is to reassess his wardrobe and make sure that he owns only clothing that feels comfortable. Style comes second. That makes step 2 possible, which is to say “You can wear jeans or sweatpants today. Which would you like?” Do not allow him to pick any outfit from amongst 10. When you go to the store to spend his birthday money, rather than allowing him free reign of the toy section, say, “Would you like a game or some Legos? It’s your choice.” Obviously pick 2 things you know he likes, but do not allow him to choose Option C. Children, especially those of the autistic variety, become very easily overwhelmed with too many choices. For a young child, 2 is plenty. Expand the number of choices at your own discretion, but even as an adult, your child may struggle with this and need you to artificially limit his options.
5. Be flexible. If your child prefers to sleep on the floor rather than in his bed, simply move the mattress to the floor. If he complains that his pajamas hurt, let him sleep in his underwear. If he wants to watch pre-school directed television when he’s 18 years old, who’s he hurting? Realize that children with autism, by the nature of their developmental disability, show very scattered skills and abilities. He may be able to drive like a 16 year old, follow stories like a six year old, read like a 10 year old, and express emotions like a pre-schooler. Don’t look at your child as the age he is, but rather as the age at which he functions in each specific area. Cater to these as best you can, because your child cannot help it.
4. Use play to engage. If your daughter likes dolls, a dollhouse is the perfect toy with which to practice language, emotions, and interaction. If your son likes cars and trains, Thomas the Tank Engine characters have faces and speak and can be used to act. Many children like plastic animal figurines, which can be used in the same way. Encourage this type of play with an adult, older sibling, therapist, peers … all of the above.
3. Communication options. Regardless of how verbal your child may seem, teach him at least one alternative method of communication (PECS, sign language, typing, text-to-speech, etc). I was very verbal at a young age (2, 3), but the topics on which I can be verbal have always been limited. As I’ve grown older, I’ve learned to take fragments of things I’ve either said in the past or have heard others say and piece them together so that it sounds like intelligible speech. It’s really complex delayed echolalia. Very little of what I say out loud is both my own and novel. In order to produce new ideas, I need to write. In order to process, I need to write. In fact, and this may not make sense, I often do not process what I say. I can piece the fragments together and form a response based on what I know I should say, but most often, it would be impossible for me to repeat what I’ve just said to you, because I never processed it. Part of my brain gets left out. Even if it appears that your child is keeping up verbally, if he is on the autism spectrum, there is a good chance that a second means of communication would serve him well.
2. Don’t be scared of different. If I want to use a TTS in public and I’m not afraid of “what people will think,” you had better not be either. If your child wants to wear clothing that he finds comfortable and you find unattractive, and you’ve explained that “people typically do not wear clothing like that. They may look at you and think you are strange” and your child has no problem with that, then let him be. If he wants to text and wear headphones during church because it’s the only way he can possibly stand to be in that crowded room right then, and you’re afraid people will think he’s rude, then I question why you’re trying to impress people at church. If you know your child can only process auditory information when his hands are doing something (for me, it’s Spider Solitaire on the computer), but it looks like he isn’t listening, I ask you: Would you rather have him hear you, or look like he hears you?
1. Be consistent. If you’re upset, stressed, scared, overwhelmed, and yes even exuberant, keep your expressions of intense emotion to a minimum. They will confuse your child. Children with autism need their parents to be the same, above all else. It’s okay to practice labeling and expressing emotions, but only insofar as your child can understand them and can do the same for his own emotions. I am grateful for almost nothing more than the fact that my mom has always been rock steady in every way. You can use a lot of words to describe people on the autism spectrum, but “forward thinking” isn’t usually one of them… we live in the here and now, and if here and now is confusing or not right, then our worlds crumble. We can’t see beyond the right now to the what will be. We like routine because it’s consistent. Bedtime needs to have the same routine, day in and day out, as does wake-up time, meal time, and time to go to the grocery store. It may be boring to you, but it will make for a much happier child. If something different is going to happen, please let us know what to expect and remind us several times. Check for understanding.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
My Five-Year-Old Child Does Not Talk … Will He Ever?
This guest post is by Connie Kasari, Ph.D., a Professor of Education and Psychiatry and the Center for Autism Research at UCLA.
This is the question and the worry for a quarter to about half of all parents of children with autism. Research studies tell us that children who can talk by the time they turn five years old have better outcomes. But is this age marker meaningful, and what does it mean exactly?
The extraordinary success of early intervention programs has been shrinking the numbers of children who remain nonverbal. Still many children develop slowly, becoming late speakers if at all. What do we know that helps these children?
Late speaking children were the subject of a recent review paper, which was selected as one of Autism Speaks’ Top 10 Scientific Achievements in 2009 (Pickett, Pullara, O’Grady & Gordon, 2009). The authors found 64 studies involving 167 children who learned to speak after age five. Several important observations were noted. First, the authors found that while most children who learned to speak were between five and seven years some children learned to speak for the first time at age 13 years! The majority of children learned single words, but some were able to speak in sentences. Finally, the numbers they report are probably an underestimate of actual cases since researchers often exclude children who are nonverbal, or under-report late speaking children. Therefore, it may be harder to learn to speak after age five, but it is clearly not impossible.
What types of interventions are helping children to speak? Several approaches look promising. Both behavioral interventions and ones using augmentative and alternative communication devices (AAC) seem to work. AAC approaches (examples include PECS, sign language and speech generating devices) do not seem to inhibit the development of spoken language (Schlosser & Wendt, 2008); however, for many children the use of AAC allows them to become communicators without reliance on spoken language. Thus, AAC interventions need to be adopted more often and studied.
Applied behavior analysis (ABA) is the most common approach to teaching children with autism; however, the results of intensive training have not always improved spoken language. A promising hybrid behavioral and developmental intervention focuses on ‘joint attention’, nonverbal gestures that develop before children learn to speak with words, and involve the sharing of attention between a person and an object or event. Preschool aged children who received a joint attention intervention made greater language gains than children receiving traditional applied behavior analysis interventions (Kasari et al, 2008) but it is not clear if similar interventions will work with older children.
At UCLA we are beginning to test out whether a joint attention intervention will be effective for children who are nonverbal and older than five years. The study is an Autism Speaks funded High Risk, High Impact study for Characterizing Cognition in Nonverbal Individuals with Autism (CCNIA). This multi-site study involves researchers from UCLA, (Connie Kasari) Kennedy Kreiger Institute (Rebecca Landa) and Vanderbilt University (Ann Kaiser). We are comparing our joint attention intervention with a focus on spoken language (using Enhanced Milieu Training; Kaiser, Hancock & Nietfeld, 2000) to an intervention involving the use of a speech -generating device. A unique aspect of this study is the use of an alternating treatment design, recognizing that children may need a sequence of treatments for best response, or may respond better with one treatment versus another. This design is called a SMART design (sequential multiple assignment randomization trial –SMART; Murphy, 2005). Our goal is to determine the most effective intervention for increasing communication competence of children who are nonverbal, recognizing the variability in characteristics of these children, and the individualized nature of their response to treatment.
So the good news is that language development CAN progress after age five, but stay tuned for more research!
Kaiser, A. P., Hancock, T. B., & Nietfeld, J. P. (2000). The effects of parent-implemented enhanced milieu teaching on the social communication of children who have autism. Journal of Early Education and Development [Special Issue], 11(4), 423-446.
Kasari, C., Paparella, T, Freeman, S.N., & Jahromi, L (2008). Language outcome in autism: Randomized comparison of joint attention and play interventions. Journal of Consulting and Clinical Psychology, 76, 125-137.
Murphy SA. (2005) An Experimental Design for the Development of Adaptive Treatment Strategies. Statistics in Medicine. 24:1455-1481.
Pickett, E., Pullara, O, O’Grady, J., & Gordon, B. (2009). Speech acquisition in older nonverbal individuals with autism: A review of features, methods and prognosis. Cognitive Behavior Neurology, 22 1-21.
Schlosser, RW, & Wendt O (2008). Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology • Vol. 17 • 212–230.
In Their Own Words – Silent Language of Love
On Monday afternoons, Ethan, our ten-year-old with autism, attends a gymnastics class with eight other children who have a range of different special needs. Today has been a hard day for Ethan—there’s a note from school referring vaguely to “an incident at the computers” and later, a refusal to do any math at all. I’m poised in the lobby by the window that offers a little view of the class, ready for the worst—a blow-up, a melt-down, something—and instead I watch Ethan blink with surprise at a new girl walking into class. Taller than him by at least five inches, she has striking red hair, glasses, and Down’s syndrome. Right away, I can see that, for whatever reason, she has captured his interest. He flutters closer and examines her from different angles, a technique he usually reserves for particularly interesting machines. As they move through their warm-up routine, he positions himself as close to her as possible. A few minutes later, they are partnered to run through some somersaults and cartwheels together.
If I were in the room with them, I’d be barking directions and prompting conversations because I’m his mother and can’t help myself: “Ask her what her name is!” “Tell her yours!” “Find out what school she goes to!” In my heart of hearts, I know he’d probably do as he was told and, I suspect, the interest would die because pushing him into the realm of ordinary conversation has never interested him.
Instead, as she cartwheels, Ethan squeals with laughter, bounces up and down, and then turns serious: “Nice cartwheel,” he says, staring at her feet.
For Ethan, language is a perpetual stumbling block. Asking a question is a dangerous invitation to getting a question asked back, to launching in on the exhausting business of talking back and forth. Recently, though, he’s learned that compliments serve nicely as predictable and brief conversation starters.
“Thank you,” the girl says, nodding and readjusting her glasses.
Usually an exchange like this would do the trick for Ethan and be enough bonding for one day. He’d go off and find a heating vent or a light switch to examine close-up. But today, he stays with the girl, and—I can hardly believe it—never takes his eyes off her.
For the rest of the class they say nothing, but stay in each other’s vicinity. There’s a thumbs up at some point and even, when they get to the trampoline, a smile from her. At the end of class, they are meant to shake hands with their teachers, which Ethan usually does, but today he skips past his teachers to poke his hand out in the direction of his new crush. For a horribly long moment, it hangs there, hovering in the air between them. I send up a silent prayer: let her shake his hand, let her do something. Though he’d probably make a speedy recovery, I fear my heart will break if she doesn’t.
Then she surprises everyone: she looks down at both her hands, chooses the wrong one and gives it to him. As the room empties around them, suddenly they are standing side by side, holding hands, looking—more than anything else—stuck.
Is this terribly awkward? Are they dying of embarrassment? The woman who must be her mother and I exchange glances. Should we sail in and fill this silent tableau with our chatter and the exchange of names? Because she holds back, I do too and eventually they manage to end the moment themselves. Ethan notices a light switch he hasn’t flicked today; she spots her shoes, two ruby-red slippers to match her hair.
After it’s all over, Ethan says only this: “I liked that girl.”
Why, I wonder. Why did my son, who is afraid of new people, who needs to be prompted to notice other kids, take such a shine to her? I can only think he must recognize something in her face about what they share—that he knows, instinctively, the world is hard for her, too.
I’m still thinking about this scene the next morning at the bus stop. In our struggle to help Ethan gain speech, we have tried virtually everything that books have offered us. He’s got some sign language, enough that any time we yell, his hand fly up to his chest and beat out I LOVE YOU over and over. We make him ask questions, two of us at every dinner, two of his brothers; we prompt him through stories, start his words for him. We have forced Ethan to talk every single day and though I’m sure this was right, I also wonder if we haven’t learned something ourselves from his reticence.
When you don’t talk much, there are many things you also don’t do: you don’t make up stories, you don’t lie, you don’t exaggerate the truth to make everyone laugh and/or feel sorry for you. You also don’t manipulate, or bore people without realizing it. I’ve spent years being jealous of parents with chatty children until I got one myself and realized: Ah yes, some children do go on and on, in a way that isn’t always dreamy.
At the bus stop, Ethan’s two younger brothers are infinitely smoother than he. One chats up another mother with a story of closet monster, the other chucks sticks on a roof with his friend from up the street. Ethan as always, stands alone, humming, with a nervous eye on the horizon for the bus. Though he never talks at the bus stop—there’s too much to do, watching for the bus—he’s recently started a new practice of hugging the other mother and me as the bus pulls up. Usually he whispers what we should say before we can: “Have a good day, Ethan.”
It’s inappropriate, no doubt, and something we should probably discourage before he gets to middle school, but for now, the other mom loves it and smiles afterward. And there’s also this; our blissfully typical six-year-old says goodbye by chucking me his stick form the bus steps and calling, “Hold onto that until I get home.”
We have learned that silence is a cloud with its own silver lining. What Ethan manages to communicate in his odd ways—in his gestures, in holding hands with that girl, in his morning hugs—can seem, at times, truer than a half-hour of his brother’s nightly laments about playground popularity. Is Ethan bonded to others? Does he communicate his feelings? Sometimes I think that in the absence of easy access to words, there’s a way he says the real things better than the rest of us.
This “In Their Own Words” essay is written by Cammie McGovern and was originally published on AutismSpeaks.org.
If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
