Advocating for a Daughter Stuck in the ‘Shadow of Autism’

Virginia Breen’s daughter, Elizabeth, can’t talk. How she reveals the love of God through poetry.

Her.meneutics July 10, 2012

Virginia Breen’s daughter, Elizabeth, seemed to be thriving like any other infant: walking and smiling, her eyes bright and cheery. Then within one week, Elizabeth mysteriously stopped speaking, and shortly thereafter was diagnosed with autism. But for the past seven years, the 14-year-old has been “talking” through writing, mostly through poetry. Her writing is featured in I Am in Here (Baker), which is the story of Breen, a Christian, relentlessly advocating for her child, discovering her child’s compassion for others, and researching ways to help Elizabeth overcome “the shadow of autism.”

Breen, who recently spoke about Elizabeth’s autism and poetry at TEDMED in April, talked to me about common myths about autism and what she has learned about God through Elizabeth’s vibrant faith.

Through the years in which Elizabeth couldn’t speak or use a letterboard, how did you know that she wanted to communicate?

Despite the turmoil of autism, there were times when Elizabeth would look into my eyes and blink slowly and deliberately, like a stroke victim to show me that although she could not speak, she understood what I was saying to her. This didn’t happen often, but it drove me to find a way for her to break free from her “silent cage.” Finally, when Elizabeth was 6, we found Soma Mukhopadhyay in Austin, Texas. She developed the Rapid Prompting Method (RPM) and taught her own nonverbal son to communicate with it. Soma has freed Elizabeth and more than 1,000 children and adults with RPM.

What have you learned about faith from Elizabeth?

Elizabeth has taught me … about keeping faith alive in the midst of life’s challenges and focusing on what is important. Despite not being able to speak or control her body, she is joyful and hopeful. When she was 12, she wrote:

The Things I Know For Sure There is a God I am loved The sun will shine I will survive autism

You write that you “struggle every day not to be sucked down [autism’s] hole.” Elizabeth writes, “I have autism. I am different. I am how God made me.” Is autism how God made Elizabeth, or something from which she needs healing or something else altogether?

I believe God made each of us in his image. Our bodies and souls are perfect in his sight. But our earthly existence can be far from perfect. Elizabeth has a medical condition that came from living in a polluted world, not from God. We have sought medical care for her as well as healing prayer. The hope for Elizabeth is that her body will be healed by God or medical science, or a combination of the two, aided by the force of her strong will.

One of the things I appreciated most about this book was the way in which it debunked some myths about autism that I had thought were true. What are some of those myths, and how has Elizabeth’s life proved them wrong?

The label “autism” contains so many myths: that there is no desire for connection, no intelligence, no hope for improvement. Elizabeth wants the world to look at autism differently. Autism is a medical condition that can be treated. With improved health, our children can be educated and, in some cases, completely recover. Elizabeth is on the road to recovery, and sometimes that road is bumpy. She helps us understand what it is like to live with autism in this poem and reflection:

Me Revisited

I can’t sit still, What’s wrong with me? My body is doing things I can’t explain. My dignity I am trying to maintain. People stare at me When I rock and shake. I don’t know how much More I can take. So much to deal with Going on inside me. I wish I could get better, I want to be set free From my silent cage.

Elizabeth’s reflection: Some of the people at school who do not know me make me feel uncomfortable. They stare at me. I would not rock and shake if I could stop it. It just happens sometimes. I wish they could understand, but mostly I wish I could explain it to them.

Elizabeth wrote this next poem to dispel the biggest autism myth of all. When she was 9 years old, a speech expert said in front of her, “Maybe she just doesn’t want to talk.” This was her response:

Me

I sometimes fear That people cannot understand That I hear. And I know That they don’t believe I go To every extreme To try to express My need to talk. if only they could walk In my shoes They would share my news: I am in here. And trying to speak everyday In some kind of way.

Elizabeth’s reflection: I wrote “Me” to let people know that even though I don’t speak, I feel and understand the world around me. I want to be heard and respected. I want that for everyone, especially for people like me.

You believe that Elizabeth’s autism was triggered by routine vaccinations as a child. What would you advise parents when it comes to making choices about vaccinations?

The medical community believes autism involves a genetic component and an environmental trigger based on the fact that autism is more common in families and there is no such thing as a genetic epidemic, so something in our environment is causing the monumental increase. Today, one in 88 children in the United States has autism, a 78 percent increase in a decade.

For Elizabeth, I believe the genetic component is our family history of autoimmune disease and the environmental trigger was her 15-month vaccinations. Within a week of receiving those five vaccines, she lost her ability to speak. I am not anti-vaccine. But I believe children receive too many, too soon, and all vaccines need to be cleansed of questionable ingredients. And for families like mine, with a history of autoimmune dysfunction, the vaccination schedule should be reviewed very carefully. Parents can and should educate themselves to make informed, appropriate choices for their children.

From Elizabeth’s writing, what do you understand her to believe about God?

Elizabeth is an old soul. Her sense of God is much wiser than her years. Perhaps because she can’t speak, she hears more clearly that small, still voice speaking to her throughout the day. She wrote this poem and reflection when she was 9 years old.

God Loves Us All

It does not matter who you are

It does not matter if you stray far

God is always there for you

In spite of what you may do

His love is stronger than anyone can know

You just have to know to go

to God.

Elizabeth’s reflection: I wrote this poem because I want people to know the power of faith. No matter what you face in your life: sickness, hunger, poverty or just not having a relationship with God, he is always there for anyone who calls on him.

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