Archive

Posts Tagged ‘communication’

Webchat on Promoting Language, Learning and Engagement in Toddlers and Preschoolers

December 1, 2011 3 comments

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

12:30
Hello everyone. This is Dr. Geri Dawson. Thanks so much for joining me today. I am looking forward to reading your questions.
12:33
From Melanie
I am curious as to the research base on the consultative model and its impact in providing services with the very young child/toddlers with the diagnosis of ASD. Can this question be answered? Thanks
12:34
Hi, Melanie. Providing consultation to birth-to-three providers is a frequently used strategy for helping those providers learn to use ASD-specific intervention approaches. However, I am not aware of any empirical studies that compare a consultative model to direct intervention by specialists. The currently recommendation is for young children with ASD to receive direct one-on-one intervention with highly trained and well-supervised therapists for a significant part of their overall intervention program.
12:34
Comment From Julie

Hi Dr. Dawson. My son is 6 and he is echolalic and scripts a lot. any thoughts on how to best address both of these communication issues?

12:37
Hi Julie, Echolalia is a common way for kids with ASD to learn to speak. When your child echos back a word or phrase, treat it as a real communication regardless of whether it seems to make sense or not. Use part of the echoed speech but modify it to be more appropriate. For example, if he says, “You want cookie” when he wants something to eat, say “Cookie – you can say ‘I want cookie’ – and then give him what he wants. Continue to model appropriate speech incorporating parts of his echoed speech. The important thing is for him to feel successful in his attempts to communicate as this will keep his motivation high.
12:39
Comment From Troy S.

I do, but not sure how to ask it. It’s very general. We have a 2 yr old who hasn’t spoken a word. He was diagnosed at Kennedy Kreiger as being on the s[ectrum. And we are wondering if there are any realistic expectations of when we can expect him to speak his first words….?

12:41
Hi Troy, Many two year olds with autism have not yet developed speech. Is your child making any sounds at all? Vocalizing? If so, build on this sounds by imitating them, playing with sounds and songs, and always responding to his sounds as if they are meaningful communication, while modeling the correct word for hiim. Likely, he will start to use words eventually.
12:42
Comment From April Costello

@ Julie, there is a wonderful article which further reinforces Dr. Dawson’s recommendation. It is called Finding the Words, To Tell the “Whole” Story by Marge Blanc. It was a tremendous help to me in understanding my Son’s speech patters! :)

12:43
Hi April, There are many strategies that parents can use at home to promote language. You’ll want to use these throughout the day during your regular activities, such as mealtime, bathtime, at the park, and so on. Lynn Koegal has written a book called “Overcoming Autism” which describes many strategies that parents can use at home at promote speech. I think you will find that they are very helpful. Here is the link:
12:44
Comment From Shane Lynch

Based on Dawson and Osterling (1997) and the National Research Council (2001), family involvement has been cited as an element of best practice. However, unlike the other elements, family involvement is less quantifiable. Have you any thoughts on what “quantity” of involvement is related to improved outcomes? Thanks.

12:47
Hi Shane, Family involvement in early intervention is essential. Parents should be at the helm of any intervention program. Although it is difficult to “quantify” as you point out, the key points are that (1) parents should be involved in setting goals for their child that they find meaningful and important, (2) sensitivity to the individual family – their values, beliefs, culture, and so on is needed, (3) parents should be taught strategies for promoting skills at home using similar approaches that are being used at school and in therapy so that these skills can generalize to the larger community environment. The good news is that research is showing that parents can learn these strategies and are effective at using them to help their child.
12:49
Comment From Julie

Thanks. as far as scripting. He scripts a lot of TV/ movies and at inappropriate times, like during library time at school. Any ideas on how to manage it when it’s not approproate but also encourage him as he is learning new words through this avenue. many thanks!

12:52
Hi again Julie, The key thing here is to determine why and how he is using his echolalia. Does it signal that he is getting overwhelmed? Is he using it in a self-stimulatory fashion? Is he using it to communicate? Depending on the function, you will want to respond in different ways. For example, if he is using it in a self-stimulatory fashion in inappropriate places like library time, his teacher can teach him the idea of “quiet voice” – i.e. he should be reinforced for keeping quiet during the times when that is appropriate.
12:52
Comment From Matissa

Hi Dr. Dawson. I teach 2 & 3 year olds at a preschool and we have a few children within our program who are on the spectrum. What tips can you give us as we work with these children alongside neuro-typical children? Esp. as it pertains to class structure and discipline.

12:56
Hi Matissa, Children with autism tend to thrive in an environment that is structured, provides routine, and visual supports (such as pictures that explain the sequence of activities). The neurotypical children can be taught to help the children with autism by teaching the neurotypical children to approach and involve them in play. There are a number of well-established curricula and program features that have been used effectively for children with ASD. Here is a link that describes the features of a good preschool program:
12:56
Comment From Tami

Is sign language an appropriate tool? It seemed to help our neural typical child and I am wondering how commonly it is used with non-verbal children on the spectrum

12:59
Tami, I am not sure how old youg child is, but sign language can help a child with autism communicate. Sign language still can be challenging, however, because it involves complex motor movements and has its own syntax, and so on. So, often the signs used are simple ones. Spoken language, and perhaps other augmentative language devices, such as pictures, should always be used along with sign language.
1:02
Advance question From Breiana
My 2.5 year old son was diagnosed with autism 4 weeks ago. We were told to get him in ABA/VB. Is this the most effective method of ABA? What interventions do you recommend we do at home? We are also looking at preschools for when he turns 3. Do you typically recommend an inclusion preschool or an autism only preschool? Thanks
1:03
Applied behavior analysis (ABA) is a well-established effective intervention method for young children with autism. Within the broad category of ABA interventions, there are many different models, and Verbal Behavior (VB) is one of those approaches. There is no evidence that VB is more effective than other approaches that are based on ABA. The choice of classroom depends on many factors and the individual child. There is no one size fits all answer.Here is a good website that discusses how to evaluate a preschool program http://www.eric.ed.gov/PDFS/ED486480.pdf . Here are some features you should look for in a preschool program:
-The intervention program should be individualized to each child, taking into account each child’s unique characteristics, strengths, and challenges, and utilized well-validated intervention methods, such as ABA.
-The intervention program should be designed and overseen by a trained, professional, interdisciplinary team.
-A curriculum that focuses on the specific areas of challenges in ASD should be used.
-The program should provide for ongoing data collection on the progress the child is making in each skill area, with adjustments to the program made when progress is not evident.
-The child should be engaged in the intervention activities and receive at least 25 hours of structured intervention each week.
-Parents should be closely involved in the intervention, setting goals and priorities, and be taught how to implement the intervention strategies at home.
1:04
Hi Terry – A good article describing the important elements of an intervention program can be found at this link:
1:05
Comment From Tracy

Hello Dr. Dawson. Are there national standards in early interventions that you see most frequently used or cited?

1:06
Hi Tracy, Here is a document that describes national standards for early intervention:
1:07
National Autism Center. National Standards Project – Addressing the Need for Evidence-Based Practice Guidelines for Autism Spectrum Disorders, 2009.http://www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf
1:08
Comment From Guest

My daughter is struggling to learn how to handle and care for her 6yr old autistic child. We have been looking for resources but keep coming up empty. Any advise?

1:09
Hello Guest at 12:46, Please check out the Resource Guide From Autism Speaks’ Family Services:
1:09
Resources Guide from Family Services:
http://www.autismspeaks.org/family-services/resource-guide
1:10
Comment From Tami

My grandson is 6 and it seems as though his behavior changes weekly if not daily. When he does something wrong timeout did work, taking toys away did work, now it seems as though NOTHING works. Should an autistic child be punished? and if so what is the best form of punishment to use?

1:14
still typing …
1:14
Hi Tami, Children with autism often have behavioral challenges, such as tantrums and sometimes aggressive behavior. Often these behaviors are used to communicate a need or want. Given that children with autism have trouble with communicating with words, they use these behaviors instead. So, the first step is figuring out why the behavior is occuring and what your grandson is trying to communicate. Sometimes, the behavior occurs because the child is overwhelmed or frustrated. So reducing overwhelming situations and frustrations will help. But, ultimately, you will want to teach your grandson to communicate his needs in a more appropriate way. For example, if he tantrums when he wants something, you will want to make sure that you model for him how to ask for something appropriately (even if this is just helping shape his pointing toward an object) and then reinforcing that appropriate behavior by giving him what he is requesting. It is helpful to work with a trained professional who can help you use these strategies. I do not recommend punishment because these challenging behaviors are really the result of difficulties in communication.
1:15
Comment From Kristen

I wanted to add about Gabe that he has started to babble A LOT in the last month. He runs up to one of us and screetches AH or EE wanting us to mimic him. Can this lead to eventual speech? He is even making eye contact for periods of 3 to 5 seconds when we are doing this. Is there a way to mold this into more sounds. Right now he does not want to deviate from the 3 or 4 sounds he is comfortable with.

1:17
Hi Kristen, Wonderful!! It is such a good sign that Gabe is babbling a lot. Make sure to respond by imitating his babbling and, when appropriate, modeling a word that is simple and builds on the babbling sound. For example, “AH” can eventually become “BAH” and then “BALL”.
1:18
Comment From Bill

Dr Dawson, can you comment on how we could do a better job at individualizing the learning and communication for various ‘colors’ of the spectrum. many school districts, doctors and academics have a tendency to lump all of our kids into one ‘autism’ bucket (The DSM V may exacerbate this). How can WE better communicate these more individualized needs of the autistic children to the general population? What do you see us as the autism community need to do better?

1:20
Hi Bill,I couldn’t agree more. Kids with autism are each unique and each have their own ways of learning, strengths, and challenges. Although there are some general principles that are helpful for most kids, it is important to individualize each child’s program. Some children learn best through the visual modality and need lots of support to develop speech. Others are talking up a storm but are focusing on only one topic and need to learn how to engage in a conversation. A good educator or therapist should be identifying each child’s learning style and objectives and then developing an indivualized plan for that child.
1:22
Comment From Guest

Tami, sign language has been very helpful to my twin sons who are on the spectrum. It seems to have lead to words for one of my boys and it lessens frustration for the other.

1:22
Comment From Julie

We’re trying to integrate our son into the typical kindergarten classroom. Any advice to give on how to successful to this. His current classroom is 8 children all on the spectrum. The typical kindergarten classroom is 20 – 25 children. Thus far we’ve agreed to do it one subject at time, starting with library time, moving into music as these are the activities he enjoys the most.

1:24
Hi Julie, A good strategy is to familiarize your child with the teacher and classroom ahead of time, teaching him about the layout, routine, and so on. While he is in the classroom with other kids on the spectrum, identify the specific skills that he will need to be successful in the typical kindergarten classroom. Will he need to stand in a line, raise his hand, sit for long periods of time, and so on. Teach and practice those skills ahead of time and then help him generalize those skills to the typical classroom. In addition, start with short periods of time in the typical classroom during periods that are least challenging and then extend the amount of time he is there. Good luck!
1:26
Comment From Matissa

Will the transcript from this live chat be available for print after the chat is over? Would love to share this information and links with my fellow teachers.

1:26
Yes, we’ll be posting the transcript on our science blog. Here’s the linkhttp://blog.autismspeaks.org/category/science/
1:27
Comment From zenaida

My son is 6. I’m trying so hard to teach him to do the right thing. What he does is he takes his poop and puts it all over himself, the sink, door and towel. I don’t know how to stop this. I need help

1:29
Zenaida, I know this must be very challenging for you. I think it would be best if you could work with a behavior specialist who can help you get this behavior under control. Here is a link to resources in your area: If you can’t find someone, please contact us at Autism Response Team and we will help you sort this out. Here is the link:
1:31
Comment From Tiffany

My non-verbal 4 year-old has just been diagnosed on the spectrum and has been in early intervention programs and speech therapy since she was 2. It seems like she has been on the verge of of communicating vrbally for the last year, she says words here and there, just not consistently. We have been advised to get her in an ABA program, but our insurance won’t cover it. What other resources do you suggest to get our little girl consistently communicating?

1:33
Hi Tiffany, Your local school is obligated to provide preschool programming for your child, so be sure to take advantage of that. You can also use strategies at home. Lynn Koegal’s book “Overcoming Autism” describes many strategies for promoting speech and language that parents can use at home. The fact that your daughter is saying words here and there is a very positive sign. Be sure to imitate those words and reinforce them by responding to them.
1:35
Dear everyone, I am sorry that the hour is over and went so quickly. I wish I had more time to respond to each one of your questions. Please visit Autism Speaks’ website, especially the Family Services section, to find many resources and tool kits for families. I will be holding another chat in the future so I hope we will have a chance to communicate again. Best wishes, Dr. Dawson
1:36
Transcript coming on our science blog:http://blog.autismspeaks.org/category/science/

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.


Share

In Their Own Words – 10 Ways to Help Your Child with Autism

August 16, 2010 31 comments

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.


Share

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.

Follow

Get every new post delivered to your Inbox.

Join 1,038 other followers

%d bloggers like this: