What Children with Autism Want You to Know
Five important messages from children with autism
Posted April 5, 2011
Pediatricians are storytellers. Our stories are not the made-up kind. Rather, these stories are gleaned from years of cryptic notes jotted down during interactions with the children and families we see. Our notes document a child's growth and development, interspersed with the expected childhood illnesses as well as the unexpected injury or ailment. They bear witness to a child's triumphs and valleys as he marches to young adulthood and of support given to families in times of need and crisis along the way. A child's health and wellbeing becomes the lens through which our stories are told.
When considering how I might share some of the stories I've accumulated over the last twenty years working with children and families living with Autism Spectrum Disorders (ASD), I found I had volumes of accounts from which to choose. These stories reflected hope, courage, faith, sheer will, the strength to overcome obstacles and most of all, abiding love. My new book, Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child (www.DrRickiRobinson.com), found its inspiration in these stories.
Caring for these children over many years allowed me to develop a trusting and safe relationship that encouraged the children to share their stories with me. As each child learned how to relate and communicate, often following years of intensive, multidisciplinary therapies, he was then able to begin expressing his thoughts and ideas, even hopes and desires. Over and over, I found I was hearing similar themes, sometimes delivered in poignant, often desperate even plaintiff tones through whatever means possible - spoken, typed or signed. Each child just wanted to be heard. I share with you today a few of the most common and perhaps the five most important things they want to share, since these were not meant for my ears only. They want to....
- Be valued and respected. Many of these children are very bright but are challenged in their ability to communicate their thoughts, ideas and desires. I often let the children know that I think they're smart. Most times I get a response back - anything from a fleeting glance to a smile reminds me how infrequently they hear this message. They need to be given choices that affirm we know they are intelligent and that their opinion is valued. They want to be loved for who they are. They can't help their behaviors and try so hard to navigate through each day.
- Develop relationships. Just like all of us, they want friends and are absolutely desperate to make these human connections but often don't know how to make them happen. Take the time to get to know each one. Stay in his space. Get into his rhythm and timing, often slowing down your pace and waiting for a response even if you have to count under your breath to as much as 30! This will often allow the reciprocal back and forth interactive dance they so long for. Just by being with them, they can experience your connection.
- Have a voice. Who wouldn't! We must work extra hard to give them an expressive outlet to communicate their intent, ideas and thoughts. Pictures or augmentative communication tools are particularly needed for children with ASD who are non verbal. They must be empowered to use their "voice" as often as possible.
- Be healthy. Over and over again the kids I see tell me that they want to feel better. On top of the autism, they can't fathom also being ill. However, we now know that individuals with ASD suffer from much more frequent medical concerns than typical children. GI issues, seizures, sleep problems and immune disorders are more prevalent in these children. These unmet medical challenges must be addressed and treated. A healthy child will get the maximum benefit from his countless therapies which will allow him to learn, relate, communicate and progress up the developmental ladder.
- Be as independent as possible. They want to know that they have a future and are very concerned about what possibilities might lie ahead. Children with ASD must be given the same gradual responsibilities as typical children that can lead to as much independence as possible. By raising the bar of expectation, these children can begin the road to independence. Even the smallest of tasks can be modified to help a child gain a sense of responsibility. Whether it's taking out the garbage or watering the plants, responsibilities such as these will boost their confidence and self-esteem. This, of course, is the beginning step to fostering your child's interests and discovering his dreams, which can serve as the foundation for a meaningful life.
Remember - a child living with ASD is still first and foremost a child. This is the basic premise of my new book, Autism Solutions: How to Create a Healthy and Meaningful Life for your Child. To honor all these children and families living with ASD, this book addresses the issues and challenges, both developmental and medical, that they face on a daily basis and offers help and hope to enrich lives, empower dreams, and enable independence. I am extremely interested in what families want to hear and welcome your questions and comments.