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Posts Tagged ‘non-verbal’

Exciting Times in Early Diagnosis and Treatment

November 15, 2011 21 comments

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

September 1, 2010 19 comments

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.


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In Their Own Words – The Only Thing I Worry About

July 8, 2010 19 comments

This “In Their Own Words” essay was submitted by Loary Bartlett of Owensboro, Ky.

My son Zakk was just diagnosed this May with PDD-NOS, high functioning autism, but the story does not stop there. It began in December 2005, when my mom and I recognized that my son was beginning to lose his balance and his eyes were dancing in his head. Immediately, my husband and I took him to the local pediatrician’s office, who referred us to the children’s hospital in Louisville, Kentucky, where they treat this kind of stuff. We had no idea what we were going to endure for the next four years of our lives.

It turned out that Zakk had cancer, neuroblastoma, in his pelvic area and a condition called OMS (opsoclonus myoclonus). OMS is a rare neurological disease which includes symptoms like dancing eyes, jerking muscles, loss of balance, loss of gross motor skills and loss of speech. To this day, my son has not regained speech. We have been told by the doctor that if he does not retrieve it by the time he is seven, he will never talk. May of this year, he was finally diagnosed with high functioning autism.

You’re probably wondering, how in the heck has my family survived? Sometimes I wonder that myself, but with help from family and friends and a open mind about what is happening in our lives, we are able to keep our heads above water, barely. The one thing I keep telling myself is, DO NOT QUIT fighting for Zakk; he is a wonderful boy and when you meet him, you can see that in his smile. As long as Zakk is smiling and laughing, I am happy, and that is the only thing that I worry about.

“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.

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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.

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