Review of We Walk: Life with Severe Autism

I spend hours reading pro-Facilitated Communication (FC) articles. Many of these have a defensive undercurrent I recognize as a former facilitator. I understand that proponents have a stake in making FC “work” and it shapes their reactions to the people and ideas that threaten their belief in it. I once felt that way myself. Proponents are, after all, fighting an uphill battle, with most in the scientific community and many in the autism community recognizing that FC, Spelling to Communicate, Rapid Prompting Method, and Supported Typing are facilitator-guided practices and cannot unlock independent communication skills for individuals with severe autism. 

We Walk: Life with Severe Autism by Amy S.F. Lutz (book cover)

Perhaps because of this, I found Amy Lutz’s book We Walk: Life with Severe Autism so refreshing and straightforward. To be clear, this is not a book about FC. This is a collection of essays written by Lutz, whose son, Jonah, has severe autism. The essays explore issues of identity, spirituality, friendship, and community in a way that draws the reader into their world. It is both uplifting and heartbreaking at times, but always an invitation to listen to Lutz and other parents who are in a position of “extreme caregiving.”

Their autistic children have a combination of cognitive and functional impairments and require “continuous or near-continuous, lifelong services, supports, and supervision.” Often, these individuals are non-verbal or have a limited understanding and use of language. Some, like in Jonah’s case, exhibit challenging behaviors (e.g., aggression, self-injury, and/or property destruction) that interfere with the safety and well-being not just of the individuals themselves, but of their family members, teachers, and caregivers.  Lutz writes:

My primary goal has always been to capture, for those who have never known anyone like Jonah, what his severe autism looks like: a life so constrained by dangerous behaviors, processing difficulties, and a lack of abstract concepts that the most basic elements of what most of us would consider a good life are forever precluded for him: meaningful work, intimate relationships, even just the ability to independently walk out the front door and go . . . anywhere. (p. xi)

Lutz interweaves personal life experiences with broader medical, political, and philosophical issues. Her intent, I believe, is not to tell readers what to think about severe autism, but to help them learn how to think about severe autism.

Jonah’s life, for example, has been what can be described as an “endless onslaught of impositions.” Speaking, toilet training, table manners, basic academic skills did not come easy and were, often, punctuated by Jonah’s hysterical protests. Simply saying the word “tickle,” or showing him a banana, for example, could set him off. It was not always possible to identify his “triggers” or protect him from being exposed to them, even if his caregivers knew what they were. Until his doctors were able to find a way to help medically stabilize Jonah’s behaviors, he experienced cycles of severe agitation, inconsolable weeping, and maniacal laughter. Sometimes, he would punch his fists through walls or windows, bite, hit or scratch the people around him or himself, or, despite locks on the doors, escape into the streets with no understanding of the danger he was in by running into traffic. 

Lutz does not shy away from talking about the challenges she and her husband face(d) in deciding what interventions to try with Jonah. Would medications or electroconvulsive therapy change his identity? Would he be traumatized by physical guidance In an attempt to get him to eat more than just pretzels and peanut butter? Would he benefit from Applied Behavior Analysis (ABA) or would it make him, like critics of the technique claim, a robot or trained seal? How would Jonah process these experiences?

No parent of children with severe autism takes these mind-bogglingly difficult questions lightly. Yet often, as Lutz points out, the more severe the autism, the fewer choices there are for effective interventions. 

Lutz, more than once, says she believes in faith and resilience. And, I think, it is in these moments in the book that the humanness of her and her family’s life with severe autism strikes the deepest chords. It is, for those of us who have not experienced it, impossible to imagine the wide range of emotions a parent must have when hearing, for the first time, their child has been diagnosed with severe autism. She writes:

I’m confident I speak for the overwhelming majority of parents of severely autistic children when I say that we all thought our kids would be quirky kids. We really believed it. We read books about children who lost their diagnoses through special diets, supplements, and therapies. We saw other students make great progress with applied behavior analysis. We nurtured every splinter skill, clinging to the hope that our kids’ precocious abilities to dispatch child-proof locks and navigate extraordinarily complex entertainment systems would evolve into problem-solving competencies sufficient for college, career, and ultimately, independent living. (p. 41)

But, despite receiving the most debilitating diagnosis for her son, Lutz and her family, have from the beginning, made it a priority to understand Jonah for who he is, not who they may have wanted him to be at the start of the journey. They take Jonah’s lead when he tells them white chips are salt-and-vinegar potato chips; nibbles are the pink linings of rabbits’ ears; roll it chuck is the dialogue bubble that pops up in children’s programs. They walk with him in Atlantic City, so he can enjoy the sights and sounds of the board walk, get a pretzel with cheddar cheese, and make fun lists.

Rarely, a book makes me cry. This one did. Not, as one might expect, at the hard bits, but at the tender moments shared between mother and son, son and father, or brother and siblings. These are moments worth savoring.

Lutz is a skilled writer, advocate, and educator. She has lived this experience and, really, nothing I can say beyond a quick synopsis of the book would improve upon the telling. We Walk: Life with Severe Autism should be required reading for anyone interested in supporting individuals with severe autism and their families.