Supporting Children and Families Affected by Autism Spectrum Disorders Posted on April 2, 2018 In recognition of World Autism Awareness Day, we sat down with Connecticut Children’s Autism Clinical Specialist and Research Coordinator Jennifer Twachtman-Bassett, M.S. CCC-SLP, CCRP to learn more about autism spectrum disorder and how Connecticut Children’s is helping to make life easier for patients and families affected by the condition. What are some challenges children with autism spectrum disorder face in daily life? Regardless of their level of language, all children with autism have difficulty with communication and social skills. Even a very verbal child may not know how to tell you that they need something or that something is bothering them. Children with autism also have difficulty understanding gestures and body language, which are important parts of what you are trying to tell them. They may not understand personal space boundaries, so they may get too close to you or pull at your jewelry or clothing. Many children with autism also have different sensory experiences than those without autism. They may react very negatively to a light touch, but may not react to something that most people would think was painful. Children with autism may also be sensitive to sounds or lights that don’t bother others. When sensory experiences are uncomfortable, children with autism can have a “fight or flight” response to these experiences, and they may not realize when their behavior (e.g. running away, lashing out) is unsafe. How are those challenges magnified when it comes to tackling new or non-routine experiences, such as visiting a specialists’ office or having blood drawn? Unpredictable situations can increase anxiety in any of us. The sensory and communication challenges experienced by children with autism make even a familiar place seem unpredictable at times. Even in the best of circumstances, medical appointments usually involve being in an unfamiliar environment with unfamiliar people. The routine or procedure is usually unfamiliar and there is an unpredictable pace because the patient sometimes needs to wait, and at other times, is expected to comply quickly with multiple directions. Medical environments are also often bright, loud, and visually stimulating, with pagers and machines that can make loud noises at any moment. Finally, a medical examination almost always involves touching a patient in some way, which many patients with autism may find physically invasive. Because both staff and circumstances (i.e. how busy the department is) vary from day to day, what happens at even the same type of appointment may change dramatically from one appointment to the next. Connecticut Children’s recently launched a series of “picture stories” intended to help children—particularly those with autism—learn what to expect at their medical appointments before they arrive. Can you talk about what this initiative is, how it came about and which materials are currently available? This initiative was started through a grant from Autism Speaks to create support materials for patients with autism and their families. Research has shown the children with autism benefit most from visual materials or sequences that tell them what will happen next. Research has also shown that preparing patients with ASD for medical procedures, such as blood draws, leads to better tolerance for these procedures. Most children with autism use picture or written schedules in school, so they are already familiar with these systems. We currently have picture stories for Sedation, Blood Draw, Neurology, EEG (Farmington), and Audiology (all sites). Part of our initiative also includes the creation of “sensory toolkits.” These kits contain sensory and distraction materials to help patients to tolerate medical procedures and cope with waiting in a small space. We have kits in several areas, including the Emergency Department, Sedation, Lab, and others. To ensure that our picture stories and sensory toolkits are being used effectively by our staff, part of our initiative has also involved the development of a staff training program with follow-up support if needed. What is the team working on next? What additional materials can parents expect to see soon? All of our initiatives are still continuing! We are in the process of creating more picture stories to help patients and families prepare for procedures across all of our departments and locations. We are also putting together sensory toolkits for additional departments to help patients to have a successful visit. Finally, because information from families is so important to helping staff to support patients with autism, we are working on developing a short set of questions that staff can ask families about how their child communicates, which parts of a medical appointment may be difficult, and what supports can help their child. Our goal is to make this important information easily accessible in the patient’s electronic medical record so that all staff will know the best way to interact with each patient with autism. What are some tips for parents of a child with autism spectrum disorder, who are nervous or hesitant about introducing their child to new situations? Do as much as you can to prepare yourself and your child for his/her visit. This includes: Learn what will happen during the visit or procedure, including what your child is expected to do (i.e. sit or lie still, change clothes, etc.). You can find out about your child’s visit by going to our website or calling the department where your child is having his/her visit. If you think your child will have difficulty with a part of the procedure, let us know what may be difficult and how we can help. Talk to your child about what will happen during the visit and what they are expected to do. Visit Connecticut Children’s website to show them where they will go (the building and exam room) and review a picture story about the appointment if we have one. Practice what you can with your child so that he/she knows what to do during the appointment. Here are some things you can practice: Opening mouth and saying, “ahh” If you have a toy doctor kit at home, you can use this to show your child some of the things that the doctor might do in his/her exam. The doctor’s exam might include: Listening to your child’s heart or chest, checking his/her ears, looking in his/her mouth, and feeling his/her wrist for a pulse. Briefly tie a scarf around your child’s upper arm to show him/her what a blood pressure cuff or tourniquet feels like. *Make sure you supervise your child closely when you do this so that your child does not get hurt! Putting a small bandage on the end of your child’s finger to practice the oxygen sensor. Standing with your back against the wall to measure height. If your child likes to pretend, suggest that your child pretend to be the doctor and examine you or a stuffed animal. Use action figures, dolls, or stuffed animals to act out the sequence. Plan to bring materials or toys that your child likes from home to the appointment. Work with your child to plan some strategies that they can use to calm themselves if their appointment becomes stressful. You can work with your child to practice using some of these coping strategies before they get to the appointment. What is the most rewarding aspect of working with children with autism spectrum disorder and their families? Children with autism like to interact with you if you are willing to interact with them regarding one of their strong interests. Learning what that interest is, and watching how it transforms the child from anxious to engaged is the most rewarding aspect of working with children with autism. It is equally rewarding to show families how to structure some of their interactions with their child around these interests and watch the effect that it has on the child’s emotions and willingness to participate in activities that they would otherwise refuse. What is one thing you’d like the general public to know about autism spectrum disorder? Children with autism are all very unique. They are doing their best to function in a world that can be confusing and unpredictable. They need our understanding and patience to help them to navigate the situations that they find difficult. With our help, so much success can be achieved! Access our picture stories Learn more about our Developmental Pediatrics program
