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by Jamie Pacton, MA
Autism Asperger’s Digest
| May/June 2012

If I could go back in time, here are the 10 books, movies, and resources I would have given myself. Read these, watch these in this order, and you will feel less lost and clearer about where you are and where you’re going with your child with autism.

After my son’s autism diagnosis, I felt like I was in a fairy tale. Not one of the magical, singing-birds, and fairy-godmother stories, but a darker tale—the kind with creepy woods, twisting paths, warring factions, real fear, and crushing loneliness. It was not the story I imagined for my family, but as I moved deeper into the realm of autism, I discovered that other people had been there before me. Slowly, as I read books and watched films about families living with autism, I saw the trail of bread crumbs that would lead me toward a better understanding of the strange place where my family had come to.

It is important that you find that trail as well, but I know it’s easy to get lost along the way.

I was totally overwhelmed by the two theory-based clinical manuals that were recommended as our newly diagnosed essential reading. In those early days I was still wrapping my brain around Liam’s diagnosis and could not bring myself to believe that these clinical guides were talking about my son (although I recognized him in every page). From these books,
I moved on to recovery narratives, which crushed me mightily as I realized how different—how much worse—my son was from the kids in those books.

It took me time to discover that there is a better order to read them in during those first days, weeks, and months after a diagnosis. If I could go back in time, here are the 10 books, movies, and resources I would have given myself. Read these, watch these in this order, and you will feel less lost and clearer about where you are and where you’re going with your child with autism.

  1. Start with Ellen Notbohm’s beautiful book: Ten Things Every Child with Autism Wishes You Knew (Future Horizons, 2012). It’s a quick read that has great power because it focuses on the child underneath the label. Reading this book will help you see your child again—with all his charming quirks—rather than just a collection of autistic behaviors.
  2. Now you’re ready for Temple Grandin’s The Way I See It: A Personal Look at Autism and Asperger’s (Future Horizons, 2011). Grandin is famous for clearly explaining what it’s like to be on the spectrum. Reading this book will help you better understand your child’s unique perspective, and it will give you a sense of the scope of what is possible for a person with autism.
  3. Next it’s time for some practical action. Turn to Autism Speaks’ downloadable “100 Day Kit”. This invaluable resource will help you with Early Intervention, talking to your family, and many other common issues. It’s also a great way to get organized for what you need to do after a diagnosis.
  4. After getting to a better place emotionally and starting services for your child, it’s time to get some ideas about how to play and connect with your child. The book I used for this task was Carol Stock Kranowitz’s The Out-of-Sync Child Has Fun: Recognizing and Coping with Sensory Processing Disorder, rev. ed. (Perigee Trade, 2006).This book has great tips on how to make any home more fun. After reading this I turned Liam’s bedroom into an obstacle course complete with mattresses, trampolines, tunnels, blanket tents, and a rug for him to roll up in. He was instantly happier at home as he jumped, rolled, and burrowed in ways that satisfied his sensory-seeking.
  5. Now that you have some ideas for play, it’s a good time to read about the autism-treatment method called Floortime, which offers a large play therapy component. Read Stanley Greenspan’s Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think (Da Capo Press, 2009). You can also find videos of the Floortime method in action on the Internet, which can show you how to flow with your child’s interests and draw out interactions to build relationships with him.
  6. After reading these books you are ready for memoirs and recovery narratives. These types of books usually show how diet, therapy, and other interventions help a child on the spectrum learn to relate to others, communicate, and be gradually mainstreamed into a regular ed. classroom. These books offer tales of hope and perseverance. Two that I enjoyed were Christina Adams’ A Real Boy (Penguin, 2005) and Catherine Maurice’s Let Me Hear Your Voice (Robert Hale, 1998).
  7. Now that you’ve had some time with the diagnosis and you’re better educated about autism terminology, you are ready to watch some of the excellent documentaries that explore the world of autism. Start with Loving Lampposts (Cinema Libre Studio, 2011), Todd Drezner’s documentary that offers an overview of the debates that divide the autism community. It leans toward acceptance of autism, rather than a cure, and it has a deeply personal dimension as it tells the story of this director’s son who is on the spectrum.
  8. For a different take on autism and treatments, check out Finding the Words (Horn Productions, 2007). This documentary follows the stories of eight children who have recovered from autism; the film strongly advocates the biomedical approach to autism treatment. The before-and-after footage of these children is truly inspirational and, even if you are not excited about the notion of cure, it can give you some ideas for special diets and supplements.
  9. Now it’s time to enjoy Temple Grandin, the HBO biopic about Grandin’s life (Ruby Films and Gerson Saines Productions, 2010). This film is eye-opening and encouraging as it shows how Grandin—a nonverbal four-year-old—became one of the most well-spoken, influential voices in the autism and livestock industry communities.
  10. From there explore the many excellent websites, blogs, and parent support forums that can give you ideas, inspire you, and support you when you are feeling low.
  11. Read be different: Adventures of a Free-Range Aspergian (Broadway, 2012) by John Elder Robison. This funny, helpful book tells Robison’s story of getting an Asperger’s diagnosis at 40 and how it helped him re-envision his own life. It also offers tips for helping kids on the spectrum deal with common life situations.
  12. For a look at autism-through-history, check out Not Even Wrong: A Father’s Journey into the Lost History of Autism (Bloomsbury, 2004) by Paul Collins. This book offers a dad’s-eye-view on autism. Collins also speculates and investigates undiagnosed autism throughout history. This is a great book for helping you feel connected to other people with autism and it offers well-researched stories as well as personal anecdotes about Collins’ son.
  13. Read Autism Every Day (Future Horizons, 2011) by Allison Beytien. Beytien is a columnist and mom to three (!!!) boys on the spectrum. This book is funny, relatable, and offers tips for many different everyday autism situations. From the “Disney Gene” to her thoughts about special diets, this book illustrates Beytien’s commitment to let her boys laugh more than they cry and it celebrates her family’s motto: “Improvise and Overcome!”
  14. Learn more about Carly Fleischmann’s incredible, moving story. Carly is a teenager on the spectrum whose world opened up when she was 11. One day, out of the blue, she ran to a computer and typed: “Hurt. Help.” From there she began to type more and her rich inner world emerged. Carly has now transformed from a severely autistic child who banged her head, stimmed, and had no language, to a leading spokesperson (through her computer) and autism advocate.
  15. Check out the amazing sensory products and autism-related toys at Fun and Function. They offer chew toys, swings, bouncy balls, and hundreds of other products that will help any child on the spectrum be more organized and calm. Every time I visit this site, I find something new to help Liam’s sensory issues—great stuff!

This is a strange land, full of the unexpected, but you are not alone. Follow the bread crumbs left by others. Research, read, and learn so you can find a path through the forest of autism. Use these books, films, and resources as a start and then blaze your own way. You’re certain to find many more great learning tools and many wonderful people along the way!

 BIO
Jamie Pacton, MA, is a writer, professor, and mother of two young children, one of whom is on the spectrum.

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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Comments

  1. LeAndra says:

    I really enjoyed this article. I liked the flow of the books and resources and I would love to share this with teachers and families that I work with.

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