I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice, by Elizabeth M. Bonker and Virginia G. Breen, is a “my family’s story with autism” book with an emphasis on the author’s relationship with the Judeo-Christian God. As such, I’ll get a bit into my own beliefs during the discussion. As a note, the mother-author of “I Am In Here” is a privileged white woman with significant resources at her disposal, which is not uncommon in these books.
The book is somewhat deceptively titled, to my annoyance. Elizabeth, the autistic daughter, doesn’t seem to have had much say in how the book was organized. The account is very much from the mother’s perspective, and most of the writing is hers. “I Am In Here” is sprinkled through with pieces of Elizabeth’s poetry and prose, fitted in with the mother’s account of the growing up and life on the spectrum story.
I should note that Elizabeth is actually not the only autistic child in this family. Her older brother, Charles, is also autistic. But he’s rarely mentioned in this book. His autism is more like mine. It saddens me that his mother hasn’t used his experiences to help understand hers at all. They may be different people and have some different experiences, but what he struggles with may also be what she struggles with.
Finally, the author-mother of “I Am In Here” makes the typical medical/parental mistake of equating autism to “everything that’s wrong with my child.” She repeatedly wishes for “recovery from autism” for her daughter. Neurodivergent readers should try not to take offense. This is the wish of a mother that wants to see her daughter happy and free of suffering, not a eugenics-focused monster.
Caution: Lots of Christian Musings
When I was doing some advance research on this book, I ran across a particular complaint over and over. It was that, in the second part of the book, the mother loses the story of her family in musings about God and her relationship with her daughter. This is a very accurate complaint. People that aren’t religious or spiritual might find the insight into a suffering believer interesting, but it might also simply feel annoying.
Personally? I believe in God. But I also became annoyed. The author spends a significant amount of time desperately trying to pray her daughter into being able to speak. On one hand, I understand this. Speech is a mode of communication we (definitely including me) take for granted. It’s the default in typical human interactions. Any mother would want her child to be able to speak. If nothing else so that they could communicate with more people, faster. We live in a world that doesn’t give the metaphorical time of day to alternative communication methods, after all.
However… God is not a vending machine. There is no way to pray that’s so perfect that God is somehow forced to give you what you’re asking for. That isn’t the point of prayer. My understanding of prayer is that it’s to talk to God, yes, and ask for things you want… But mainly it’s to help you be mindful, reframe your thinking, and align yourself with His perfect and good plan for the world.
It saddens me that Elizabeth’s existing communication (typing and using PECS and a letterboard) feels sidelined and undervalued, compared to the focus on speech. “I Am In Here” overflows with her poetry. Yet the mother’s single-minded focus on speech implies a certain amount of inability to see past the neurotypical world and its values.
Why Suffering?
The author also struggles with the question of why suffering is in the world at all, which is a normal and entirely reasonable question anyone might ask of an omnipotent God. Especially when you and the ones you love most are suffering. My best guess is that God has opted to self-limit his power to respect the free will of all his creations. Unfortunately, free will means the ability to choose wrong. We have to live with the consequences of those wrong choices… but so does everyone around us, including God.
Autism is a neurological difference that often comes with medical conditions. The brain and body can develop differently because of any number of things. Some of these are air pollution (a choice made by people in industries), toxic substances in plastics (also people in industries), genetics (a product of peoples’ choice of mates), and other factors.
Besides the co-occurring medical conditions (which can be very significant, like epilepsy), autistic people are often disabled by those around us. We think and act different than neurotypical people. We stim when upset or when happy. The people around us often see these differences and reject or avoid us. Because they do that, our work opportunities are fewer and more limited. It reduces our ability to make and keep friends and connections. Our chances to thrive and develop our interests are fewer. This is why autism is a disability, even after you set aside the co-occuring medical conditions.
Speaking of suffering, the mother writing this book describes an incident when Elizabeth contracted a rare brain virus. The virus caused her a lot of pain, and in response she began a lot of self-injurious behavior.
Good Parenting
I want to highlight this incident because although it was horrible, the mother did a lot of things right. She listened to her child when she said it hurt, and differently than usual. She observed her child’s behavior and recognized there was a serious issue. The author didn’t accept “that’s just the autism” from medical professionals. Instead, she tried option after option, searching for every possibility until they found what was going on.
I also want to highlight something in particular in the next:
This was a dark time of trying medication after medication. We just tried to get through every day. Nothing helped very much or for very long. Some medications made her much worse and were immediately discontinued. Every time I placed a new pill in her mouth, I felt terrible because I believed we were not dealing with the root cause, only its terrible outward effect.
Page 228-229 of I Am In Here
This is a revelation I wish a lot more people would have. Because yeah, most medication prescribed today is only to treat the symptoms. Psychiatry is particularly guilty of this, but the overall field of medicine in the US is as well. Finding and treating the root cause should be the primary focus of healthcare, not simply easing the symptoms and washing your hands of the matter.
All too often with co-occurring medical conditions, the root cause is unknown. And in many cases, it’s quite expensive to try to find those causes. Which, as an aside, is why I think universal healthcare should be guaranteed for all people. You shouldn’t have to be rich to get good medical care.
Read This Book If
You’d like to experience a “my family’s story with autism” involving a nonspeaking autistic child and a mother with a significant Judeo-Christian faith focus. The title is deceptive. This book is not from the autistic child’s perspective. Her writing and poetry is included, but the mother clearly organized and directed the flow of the narrative. The author-mother also clearly makes the typical medical/parental mistake of equating autism with (almost) everything that makes her child suffer. Beyond that, “I Am In Here” can be a valuable, eye-opening read into the nature of faith, hope, perseverance, and transformation.
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