When your child is diagnosed with autism spectrum disorder, it can feel like you’re on an emotional roller coaster. Whether you suspect your child has ASD, you’ve just gotten a diagnosis, or you are a veteran ASD mom, we’ve got some resources to help.
When I first began gathering my own ASD resources, I frequently found myself coming across this quote from Dr. Stephen Shore: “If you’ve met one person with autism, you’ve met ONE person with autism.” (Dr. Shore is a professor and autism expert who also happens to be on the autism spectrum himself.) It spoke to me then, and it’s something I think about often.
Autism is not one size fits all. People with autism can be nonverbal or very talkative. They can be savants, can struggle academically, or be somewhere in between. They may prefer solo activities or love being around others. In short, they may or may not behave in ways that others associate with autism. You probably know more people with autism than you realize. This comic strip by Rebecca Burgess explaining the autism spectrum is one of the best descriptions I've ever seen.
For a great community of local moms, many with children on the autism spectrum, check out the Facebook group Special Needs Moms Group Memphis TN. Connecting with other mothers was very helpful for me.
The Autism Society has a fantastic site with so many resources for families. Their leadership includes people who have autism, which is a huge selling point to me.
Autism Resources of the Midsouth is a local organization to help families.
Vanderbilt’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) has tons of resources online, from early diagnosis to the hurdles of puberty.
There are some great books, but some are better than others. I recommend reading books yourself before introducing them to a child. I recently read a book about Temple Grandin (listed below) and felt it might actually create a fear of being teased for my child, who has not experienced teasing as described in the book. For another child, it might be a perfect fit.
Books for parents:
Positive Parenting for Autism: Powerful Strategies to Help Your Child Overcome Challenges and Thrive by Victoria Boone, MA, BCBA
Population: ONE. Autism, Adversity, and the Will to Succeed by Tyler McNamer (written by a 17-year-old boy with autism and recommended for parents and teens)
Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm
A Parent’s Guide to High-Functioning Autism Spectrum Disorder: How to Meet the Challenges and Help Your Child Thrive by Sally Ozonoff, PhD, Geraldine Dawson, PhD, and James McPartland, PhD
Uniquely Human by Barry M. Prizant, PhD
An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn by Sally J. Rogers, PhD, Geraldine Dawson, PhD, and Laurie A. Vismara, PhD
Books for Younger Kids:
Ian’s Walk: A Story about Autism by Laurie Lears (ages 4-8 and recommended for siblings of children with ASD)
The Girl Who Thought in Pictures: The Story of Dr. Temple Grandin by Julia Finley Mosca (ages 5-10.)
My Brother Charlie by Holly Robinson Peete and Ryan Elizabeth Peete (ages 6-10)
I See Things Differently: A First Look at Autism by Pat Thomas (ages 4-7)
Books for Tweens and Teens:
I have not encountered these years with my child yet, but here's a great post from another mom who has.
Growing Up Book for Boys: What Boys on the Autism Spectrum Need to Know by Davida Hartman (ages 9-14)
Just Right for You: A Story About Autism by Melanie Heyworth (ages 8-12)
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida
The Reinvention of Edison Thomas by Jacqueline Houtman (ages 8-12)
Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols with Gina Marie Moravcik and Samara Pulver Tetenbaum
The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger’s Syndrome by Jennifer Cook O’Toole (ages 10-17)
Planet Earth is Blue by Nicole Panteleakos (ages 8-12)
The Survival Guide for Kids with Autism Spectrum Disorders (and Their Parents) by Elizabeth Verdick and Elizabeth Reeve, M.D. (ages 8-13)
Just as no two people with autism are exactly alike, every family finds their own approach to dealing with a diagnosis. Some are very vocal about it, while others prefer to be more private. There is not one “right” way to approach an autism diagnosis, although you will see many people have strong opinions on the topic. The best advice I could give to parents with a child who has recently been diagnosed is this: Let yourself feel whatever you feel, and be gentle with yourself as you process your emotions. Your child is the exact same, wonderful child you had before you received the official diagnosis. The only difference is now you have valuable information to provide your child with the support they need to have the best life possible.
Do you have other favorite resources?