Advice From a Mom Whose Son Has Autism: A Q&A with Eve Megargel

stereotypes were rampant. They would never know or want to know Billy because of widespread prejudice about what it meant to be autistic. All of this was compounded by the fact that Billy didn’t speak. Matt and I lived in three worlds: One with Billy, one with Ben and as a family.  Frankly our time and energy was focused on our sons and each other. True friends were rare.  Being in normal communities was stressful, sometimes painful and often felt isolating even in the midst of others.

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How was your older son, Ben, impacted by having a sibling with special needs?

I don’t speak for my son. I did reach out and ask him this question. Here is his response: "I think I’m more aware of other people and their personal struggles — I’m more empathic than I would normally be. I also think I have a more “only child” perspective since me and Billy had such profoundly different needs and experiences growing up. I just thought of him as Billy with his own unique personality: funny, mischievous, and always surprising. I only thought of him in terms of autism when confronted by how people outside our family perceived Billy and our family."

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What advice would you give to parents of newly diagnosed children with autism?

• Discover what I refer to as “The Look”. Respond to those moments when you discern a subtle glint of interest in your child’s attention.

• Identify your child’s strengths and work from a place of hope. For example, they may have an affinity for letters or numbers. Perhaps they enjoy swinging or just being outside.

• Listen and learn from all the professionals and then ask yourself “What do I think?” And then customize all objectives so that they respect and challenge your child. No one wants to be bored for a lifetime.

• Have a mustard seed of faith

• You are the historian.

• Express joy and humor!

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You write how important it is for those who do not use speech or have limited verbal abilities to be seen as communicators.  How can we begin to cross those bridges and initiate communication with that population. What can parents and/ or other family members do to help an individual who does not use or is limited in their use of speech?

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Respect the fact that they are communicators. Talk to them, narrate what you are doing and what is happening on any given day. Explain to them why there is a change in the schedule. Provide them with explanations every step of the way. Share emotional content.  Don’t leave them out.

All of these communication exchanges start, unfold and end with visuals (symbol, text, photo or a combination). You need to honor the visual language system. A sense of self that is confident and willing to experiment requires a relationship based upon trust. Trust in the message and in the messenger are pivotal to the quality of their lives.

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Today Billy is an artist, musician, and athlete.  What can Billy’s experiences teach us?

Every individual deserves respect as a communicator regardless of the modality.
Every individual expresses purposeful and important messages.
Every individual’s personal growth exceeds all others expectations.