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Autism and the Extended Family: A Guide for Those Outside the Immediate Family Who Know and Love Someone with Autism

Mittal, Shruti, MD, FAAP; Charles, Jane, MD; Macias, Michelle, MD

Journal of Developmental & Behavioral Pediatrics: April 2018 - Volume 39 - Issue 3 - p 245
doi: 10.1097/DBP.0000000000000551
Book Reviews

Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Medical University of South Carolina, Charleston, SC

Disclosure: The authors declare no conflict of interest.

“Autism and the Extended Family” is a unique book geared toward the family members of someone who has autism spectrum disorder (ASD). The book is written by Raun Melmed, a nationally known developmental-behavioral pediatrician who is a cofounder of the Southwest Autism Research and Resource Center. It is endorsed by Temple Grandin, one of the first individuals with autism who spoke publicly about her diagnosis and became most famously known as an advocate for autism rights. It is quick and easy to read and provides some great tips for family members.

There is a chapter for each type of family member: grandparents, siblings, stepfamilies and blended families, uncles and aunts, close friends, and cousins. Although some information overlaps quite a bit in chapters, “case examples” in the viewpoint of that specific family member strengthen chapters. For example, “Grandpa Carlos” realizes that he does not know how to interact with his autistic granddaughter Maria but decides to help by installing safety locks on the windows and doors to prevent elopement. In the aunt and uncle chapter, “Aunt Melissa” schedules a mall date with her nonautistic niece because she notices that her sister cannot take both children to the mall by herself. These examples make the book relatable and provide helpful, concrete examples of ways in which family members can get involved. The sibling chapter was particularly strong, highlighting the impact autism has on a sibling.

This text has an appendix with 9 activities for the family to complete together. Although some are not actual “activities” (e.g., how to communicate and conflict resolution for the extended family), they are generally helpful and I will likely incorporate these suggestions into my clinical practice. These wonderful ideas included creating an autism survival kit, an individual parent's plan, and educational explanation cards. One especially helpful resource is chapter 10, “Surviving and Enjoying Special Events and Holidays.” This emphasized tips to make the holiday season less chaotic and more enjoyable for the child and subsequently the family.

The strength of this book is that it is easy to read for a layperson, but this also leads to some weaknesses. In multiple areas, when referring to the child, it is assumed that the child is a “he.” In the first chapter, the authors perhaps oversimplify the diagnosis of ASD and fail to mention the comorbidities of autism that often contribute to a child's behavioral difficulties (e.g., intellectual disability, attention-deficit/hyperactivity disorder, sleep problems, language delay, and anxiety). It would have been helpful to discuss how extended family members can encourage parents to seek medical advice. The second chapter is dedicated to the “stages of grief.” Although later chapters on family members have an aura of optimism and hope, the downbeat introductory chapters could be a deterrent to individuals completing the book.

“Autism and the Extended Family” is a unique, easy-to-read book that fills a void in literacy resources for extended family members. The book provides useful, specific tips that may be helpful for clinical providers to share with families. An additional selling point is that the publisher allows the purchaser to make copies of the book's content for educational purposes. It concludes with Emily Pearl Kingsley's “Holland Metaphor”: If you end up in Holland when planning a trip to Italy, mourning to go to Italy may make you miss the special things about Holland. This text empowers family members to “enjoy Holland” and develop a strong family support system that clinicians know can contribute to a child's success.

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