Archive
Family Services Office Hours – 10.26.11
Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.
Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
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My child is nonverbal. Anything new that might help him communicate better?
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.
Has anyone studied how to help toilet-train children with ASD?
This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center
and
Psychologist Amanda Santanello, PsyD, of the Kennedy Krieger Institute ATN Center in Baltimore, Maryland.
Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success. Here are some important points:
Toileting Challenges with ASD:
* Physical: Talk with your doctor about medical reasons that may make toileting more difficult for your child. These can include constipation, and kidney, urinary tract, or bladder problems.
* Language: Language delay can make it difficult for a child to ask to use the toilet. Children may need other methods to communicate their needs.
* Fears: Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness: Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets: Your child may have difficulty toileting in new places—such as school vs. home.
Tips for Parents:
Sit for six: Set a goal for six toilet sits per day. Start out slow. First trips may only last 5 seconds. Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell: Take your child to the toilet and tell them it is time to go. Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead: Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip. Talk with other people who work with your child. Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet. Be matter-of-fact when accidents happen.
Consider comfort: Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.
These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.
Please remember: Toileting can be difficult for children with an ASD. One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.
The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.
New Blood Work Tool Kit for Families and Practitioners
Posted by pediatric neuropsychologist Cassandra Newsom, PsyD, director of psychological education for the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) of Vanderbilt University Medical Center (Nashville, Tennessee), a member of Autism Speaks’ Autism Treatment Network.
On a daily basis, I interact with families and their amazing children with autism spectrum disorders (ASDs). Like my colleagues, I have seen many children with ASDs struggle with the routine blood work associated with their healthcare and participation in autism research programs. Parents, too, often become anxious as the time for blood work draws near. Nurses and phlebotomists, in turn, sometimes struggle ineffectively to communicate with and calm these young patients. Clearly, the resulting stress worsens the discomfort associated with blood work and creates negative associations for all involved in the process.
For these reasons, our team wanted to pool our knowledge about pediatric pain management—particularly techniques proven to help calm children with ASD. We wanted to improve everyone’s experience—that of the child, parents, and healthcare providers. And, so, we set about developing two of this month’s new ATN tool kits: “Take the Work Out of Blood Work: Helping Your Child with ASD” and “Take the Work Out of Blood Work: Helping Your Patient with ASD”
To help us, we recruited a talented group of graduate students and post-doctoral fellows from our Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Our LEND trainees set out across Vanderbilt’s campus—interviewing pediatric pain specialists, behavioral therapists, hospital-based child life specialists, and experts in developmental disabilities. They observed blood draws in a research clinic for children with developmental disabilities and scoured available research in the pediatric pain literature. Each team member made unique contributions to the final product based on their backgrounds in psychology, medicine, speech-language therapy, and developmental disabilities.
The resulting first draft of the tool kit focused on coping, distraction, and positive behavioral supports. We then solicited feedback from a parent advisory group at the Children’s Hospital Los Angeles, a fellow Autism Treatment Network site. As you would expect from such involved and dedicated parents, they helped us better envision the experience from the child’s perspective and provided insights into how we could encourage compassion and empathy on the part of the medical providers. They also reminded us that parents are the experts when it comes to their own child. So listen!
The team created colorful, engaging visual supports that tap into the strong visual processing abilities shared by many children with ASDs. In “test driving” the tool kits, we saw how these aids improved communication between medical providers, parents, and children. (Parents can even decide how much detail is appropriate for their child by selectively printing those visuals they feel provide enough—but not too much—detail.) Rewards are another important aspect of our guide, one that parents can tailor to their child’s interests. We also considered a child’s sensory needs in designing distraction activities and providing tips on setting up the clinic environment. Finally, both parent and provider tool kits actively promote collaboration between all treatment team members.
Our tool kits are now beginning to find their way into the hands of medical providers, researchers, and parents; and the response thus far has been overwhelmingly positive.
We hope you will download the parents or providers tool kit, give it a try, and share your experiences with us! Do you have tips for insuring successful blood draws or medical visits with your child or patient? Share your tips at atn@autismspeaks.org, and we will incorporate the best into our website at http://kc.vanderbilt.edu/asdbloodwork.
The Autism Speaks ATN/AIR-P Bloodwork Tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.
