Finding Hope in the Autism Journey
By: Elizabeth Bonker and Virginia Breen
If I had to identify one crucial skill for any mother trying to find her way through the maze of autism, it is this: learn to understand the difference between a diagnosis and a label. At each stage of her life, my daughter has defied the labels assigned to her. Elizabeth has autism and is functionally non-verbal. Although she was diagnosed as mentally retarded at age two and a half, we knew that was only a label, and an inaccurate one at that. Her true diagnosis is brilliance and her intelligence has now been tested in the genius range. But it took us years to prove what we always knew: she was in there desperately trying to break free from her silent cage.
When Elizabeth was six years old and starting to hit herself in frustration from her inability to speak, we were blessed to find Soma Mukhopadhyay. Soma taught her own son, Tito, to “write” by pointing out letters arranged alphabetically on a piece of laminated paper using her Rapid Prompting Method (RPM). We had to give it a try.
On one of our first visits to Austin, Soma asked Elizabeth to write a word that started with A, and to our surprise Elizabeth typed, “Agony.”
Soma asked her if she knew what agony meant, and she replied, “Quite so.”
I was in the room and started to shake.
Soma took a deep breath and asked again what agony meant, and Elizabeth typed, “Pain.”
“What causes you agony?” Soma asked.
Elizabeth gave her a sideways glance, filled with exasperation, and typed, “I can’t talk. I am stressed. I have no way to say that I am greatly bored with my day.”
When Soma tried to commiserate with her by saying she is also often bored, Elizabeth banged her head with her hand and typed, “But you talk.”
Soma has freed more than a thousand adults and children from their silent cages. If your child is non-verbal, please look into RPM at www.halo-soma.org.
Besides typing out her schoolwork, Elizabeth mostly communicates by writing poetry because she can pack a lot of meaning into few words. Her poetry tells us about the inner world of autism and shines a light on the world around us. She wants the world to know that just because she is non-verbal doesn’t mean that she her brain isn’t functioning.
Elizabeth wrote this poem and reflection when she was nine years old after one speech expert suggested that maybe she just didn’t want to talk.
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.
Over the past dozen years, we have seen many experts at world-renowned institutions in our quest to help Elizabeth. All too often the initial visit starts off with a conversation like this:
Doctor: Tell me about Elizabeth.
Mom: Elizabeth is fourteen, she has autism and is non-verbal but she is…
Doctor: OK, so she is low-functioning…
Mom: If I said she was blind, would you have said she was low-functioning? I was about to say she is very bright and communicates by typing on an iPad.
Doctor: Oh, I see.
It is our hope that the doctors learn to see autism with new eyes. That they don’t jump to label our kids’ complex medical issues as “autism” but treat their brains, guts and immune systems. That they don’t equate a lack of verbal expression with a lack of language, a lack of interiority and, worst of all, a lack of personhood. That they assume intelligence.
Elizabeth is full of hope for the future. Will you join her plan to change the world?
When you see
Think of me
Growing strong and tall.
When you see
The sun shining brightly
Think of me
Tough and mighty.
When you see
The water on the lake
Think of the future
I plan to make.
Elizabeth Bonker and her mother Virginia Breen just published I Am in Here: The Journey of A Child with Autism Who Cannot Speak but Finds her Voice (Baker Publishing). For more information and resources to help your child, visit www.IAmInHereBook.com.