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An excerpt from When Down Syndrome and Autism Intersect
Margaret Froehlke and Robin Zaborek
As parents of teens with co-occurring Down syndrome and autism spectrum disorders (DS-ASD), we conceived this book because there was little available to guide us during the time when our children were first exhibiting autism behaviors, during the diagnosis phase, and beyond. We remember the heartache and isolation of not quite fitting in with the greater Down syndrome community. We remember wondering why our children were not developing like their peers with Down syndrome, even though we felt like we were working twice as hard as other parents with fewer results. We dreamed of a resource guide to help families and professionals alike, so that their journeys would not be as scary, frustrating, and difficult as ours were.
When Down Syndrome and Autism Intersect: A Guide for Parents and Professionals was written collaboratively by specialists who may be parents and/or experts in their field on Down syndrome, autism, and/or the combination of the two. The topics discussed cover the lifespan and provide valuable information and data that is current, evidenced-based, and valuable for improving the lives of people with DS-ASD, as well as helpful to those who love and care for them.
For many of you, this topic may be a brand new concept. Parents who are reading this book may have just received the diagnosis of autism in their child with Down syndrome and want to learn as much as possible about how autism may affect their loved one. Many parents report that even though they have suspected autism for a while, upon diagnosis they feel as if their world has been turned upside down again, and they may grieve intensely. Others may be in disbelief that their child could possibly receive a second major diagnosis and wonder about the odds of this happening to them. And still other parents, who are dealing with multiple medical conditions on top of the Down syndrome and autism, may feel like, “Why not? He has everything else!”
Healthcare providers, school personnel, and others who may be new to DS-ASD might be at a loss about how to help the families in their care. We sincerely hope that this book will be a valuable resource to you in your workplace.
We believe that it is imperative to spread awareness of co-occurring Down syndrome and autism spectrum disorders. We also believe that it is vital to increase compassion and understanding for individuals with DS-ASD, their families, and the professionals who serve them, with the ultimate goal of enabling our loved ones to live healthy, safe, and joyful lives. It is our desire that every single family member and professional caring for a child or adult with DS-ASD will get the support they need and come to the clear realization that they are not alone.