When a child is diagnosed with autism, it can feel overwhelming. Parents, grandparents, and caregivers are bewildered and wonder, How do I help? What is my child feeling? Why are they acting this way?
It’s natural to focus on changing the behavior—stopping the stimming, managing meltdowns, and teaching “typical” social skills. But when we do that without understanding the reasons behind those behaviors, we miss the most important part.
One of the most helpful things I have ever done was to read books written by autistic individuals themselves.
Best Advice
When my grandson was diagnosed at age two, a friend recommended that I read books written by autistic authors who share their childhood experiences in autobiographies.
I found the reading to be enlightening because the books helped me understand how autistic children experience the world.
Understanding their inner world, perceptions, and struggles helped me work with my grandson.
It also helped me feel less frightened by the outbursts and understand that there’s a reason for them and that they are time-limited. Meltdowns are a sign of distress, not a manipulative temper tantrum.
As my grandson grew. I became interested in knowing how autistic adults experienced work and relationships. My recommended reading list includes those books as well.
A List of Books that Helped Me Through the Years
The Mind Tree by Tito Rajarshi Mukhopadhyay was written when he was still a teenager. He was completely noncommunicative until his mother taught him how to write. This book was an early attempt at explaining how he experiences the world and how his mind works. The result is mesmerizing.
How Can I Talk if My Lips Don’t Move by Tito Rajarshi Mukhopadhyay is another attempt at describing behaviors and what drove them. It describes how he understood the world as a small child, and how his mother tried to teach him and help him despite his apparent inability to learn. He describes what made him anxious and how he would experience a choking sensation before his anxiety caused him to scream.
The Reason I Jump by Naoki Higashida, written by thirteen-year-old, nonverbal Naoki, who had a passion for jumping.
The Journal of Best Practices by David Finch describes the thoughts and actions of a late-diagnosed autistic man who could hold a job due to his skills and the tolerance of his employer, but struggled when it came to being a father and husband.
Nobody Nowhere by Donna Williams describes her childhood, during which she struggled with her parents and school. It has great passages about how she felt inside and how she tried to make sense of the world around her.
Like Colour to the Blind by Donna Williams describes her experiences as an adult autistic with a focus on relationships. It also tells the story of an autistic friend who suffered from exposure anxiety and was considered retarded because he didn’t communicate. The book offers excellent descriptions of how she sees the world in bits and pieces, and how colored lenses helped her. With the help of the lenses, she was able to see the whole room instead of just parts of it.
Sincerely, Your Autistic Child, edited by Emily Paige Ballou et al., is an assortment of articles by autistic adults about their childhood. The stories highlight how their caregivers and teachers misunderstood them and what parents should know to better support their autistic children and students.
You Will See Your Child in a Completely New Way
When you read the words of people who’ve lived with autism, something shifts. You stop feeling alarmed by meltdowns, flapping, or what appears to be disinterest. Instead, you start to see those behaviors for what they really are—ways to cope, communicate, or feel grounded in an overwhelming world.
Your child no longer feels like a puzzle to fix, but a person doing their best in a world that doesn’t always make room for them.
If you’ve found other books by autistic authors that helped you understand your child better, I’d love to hear about them. This list keeps growing—just like our awareness.
Happy reading.