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Posts Tagged ‘toolkits’

My child is nonverbal. Anything new that might help him communicate better?

October 14, 2011 30 comments

Today’s “Got Questions?” answer comes from speech-language pathologists Cynthia Green, Kameron Beaulieu, and Jill Dolata (left to right in photo) of the Autism Speaks Autism Treatment Network (ATN). Their ATN work at the Oregon Health & Science University’s Child Development and Rehabilitation Center involves individualized parent training using a 24-week program that improves children’s social communication skills.

Today, parents and therapists have many new applications and devices that support a child’s nonverbal communication. First and foremost, however, we strongly recommend an insightful look at how your nonverbal child communicates—in other words, how he sends messages to others.

As you and other parents of children with autism know well, non-verbal does not mean non-communicative. So we always want to start with a good understanding of children’s current communication level before attempting to help them move to the next level.

We regularly use the Communication Matrix, a skills assessment designed to evaluate children’s communication abilities. This tool is unique in measuring all possible communicative behaviors, including: pre-intentional (involuntary actions, including crying when wet or hungry); intentional (actions such as fussing and turning away that are not primarily intended for communication);  unconventional (tugging, crowding to get attention);  conventional communication (head nodding, pointing, etc.); concrete symbols (pantomime, “buzzzzz” to mean “bee”); abstract symbols (single words, manual signs); and language (oral and written word combinations, American Sign Language).

To be successful communicators, children need to see that their actions influence those around them, and they must want to communicate. Sometimes, it’s difficult to determine when nonverbal children are sending intentional messages—particularly when they prefer to play by themselves, engage in self-stimulating behaviors or have difficulty sustaining interactions.

There are several programs designed to initiate positive interactions and increase communication in children with autism, including First Things First, Indirect Language Stimulation, DIR/Floortime, the Hanen program, the Early Start Denver Model, and the Autism Parent Training Program. These programs have many similar components including putting yourself at your child’s eye level, allowing your child to direct activities (following his lead), and imitating your child’s behavior. These strategies help forge a connection of interests between you and your child and can support your child’s desire to communicate.

Once children communicate using concrete or abstract symbols, they may benefit from having access to additional communication tools. It helps to remember that we all use a variety of communication methods, including eye contact, facial expressions, body language, tone of voice and gestures. So you might want to start with a system of gestures or sign.

Other low-tech tools include picture symbols and PECS . Some children seem to respond to tangible symbols such as an actual key for “let’s go outside” or a cup for “I’d like a drink.” From the use of tangibles, families can move to photographs of familiar items and eventually to more abstract symbols. Children at this stage may benefit from Tangible Symbol Systems.

Finally, parents and therapists now have access to a number of technological devices and options, from a tape player with simple buttons for playing prerecorded messages and keyboards for typing messages to sophisticated voice output devices and specialized iPhone/iPad applications.

We hope you’ll have fun exploring these options with your child, ideally under the guidance of a therapist well versed in the best evidence-based practices. And please stay tuned for the fall release of the new Autism Speaks ATN brochure on Visual Supports and ASD. We’ll be posting it for free download on the ATN’s Tools You Can Use webpage.

Readers are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism or the provision of services related to autism. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of references listed. The resources listed in these pages are not intended as a referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. The contents of this blog are solely the responsibility of the authors and do not necessarily represent the official views of Autism Speaks, the Autism Treatment Network and/or the Autism Intervention Research Network on Physical Health.

Your Questions Answered: ATN Toolkits

September 16, 2011 5 comments

Earlier week, Autism Speaks launched two new medical toolkits from its Autism Treatment Network (ATN). (Here’s our related news announcement.) Today, ATN Program Director Nancy Jones, PhD, answers your questions about these important new resources for parents and healthcare providers.

I have heard about the new toolkits but am not sure what they are exactly. How are the medical toolkits different from educational tools like the School Community Toolkit?

Autism Speaks is dedicated to developing resources to help families and individuals with ASD with daily living and healthcare. It does this through various programs including our Family Services department and our Autism Treatment Network (ATN).

All our “toolkits” and “tools” are free resources that families and medical professionals can download from the Autism Speaks website. Each provides information designed to empower families and individuals on the autism spectrum. The many toolkits now available through the Family Services section of the Autism Speaks website are designed to help families and individuals on the autism spectrum manage many of the challenges of daily life. For example, our 100-Day Toolkit guides families through the first hundred days after a child receives a diagnosis of autism spectrum disorder (ASD).

Because of the ATN’s mission—to improve the health and medical care of individuals with autism and their families—the ATN is focused on developing toolkits that focus on health-related issues. This week and over the coming months, the ATN is rolling out a series of these medical toolkits. Our just released medication decision did—“Should My Child Take Medicine for Challenging Behavior?—is an interactive toolkit with questions and worksheets that help families work with their doctor to make decisions that reflect the family’s goals and values for their child.

We’ve also released two versions of our “Taking the Work Out of Blood Work” toolkit—one for parents and one for healthcare providers. Both are filled with information and techniques for managing blood work, including printable materials that can help you prepare your child for a less-stressful, even stress-free, visit. Over the next few months, the ATN will be rolling out more toolkits for parents and healthcare providers. Look for them on the ATN’s “Tools You Can Use” page at the Autism Speaks website. Development of these tools was supported in part by a grant from the Health Resources and Services Administration (HRSA) and was made possible through the Combating Autism Act (CAA).  Please consider supporting the act’s renewal by visiting our

Combating Autism Reauthorization Act Action Center.

How do you select what topics you will develop a toolkit for?  

There are a number of ways that we get ideas for our toolkits. The primary way is direct input from the families and individuals we serve. In addition, ATN clinicians present ideas for topics based on their interactions with families in their clinics and the medical needs they observe. Our aim is that all toolkits respond directly to the needs of our community.

Will these tools be available in other languages?

Yes, most of our tools will become available in languages beyond English, starting with Spanish and French. These versions will come out in the months after each English version is released. Being able to translate these tools is one of the benefits of our HRSA funding. The 100-Day Toolkit is already available in Spanish; call 888-AUTISM2 (888-288-4762) to request a copy from an Autism Response Team coordinator.

If you have suggestions for healthcare tools families need, send us a message at atn@autismspeaks.org. Have more questions about resources? Our Autism Speaks Family Services Team can help! Contact the Autism Response Team (ART) at 888-AUTISM2 (288-4762) or email familyservices@autismspeaks.org.

Join Our Webchat with Dr. Coury: Should My Child Take Medicine for Challenging Behavior? What Can Help My Child Stay Calm during Routine Blood Work?

September 12, 2011 4 comments

Please join us Wednesday, Sept. 14 at 1 pm Eastern/10 am Pacific, for a live webchat with Dan Coury, MD, medical director of Autism Speaks’ Autism Treatment Network (ATN) and chief of developmental and behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio. Dr. Coury will be answering questions related to the release of the ATN’s first two toolkits for parents and healthcare providers:

* “Should My Child Take Medicine for Challenging Behavior?” is a family decision aid that can help you work with your child’s healthcare provider to choose a treatment that matches your needs and values.

* “Taking the Work Out of Blood Work” is an aide for parents and healthcare providers who want to ease the process of routine blood work for children with autism.

You can download both of these toolkits here; and send us webchat questions in advance at sciencechat@autismspeaks.org. Thanks and chat with you soon… 

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