The Autism Parent Memoir I’d Love to Read
Are you writing a memoir about raising a child with autism? Consider autistic readers' perspectives to avoid stereotypes. Be curious about other ways of processing information, and strengthen your literary craft with introspection about how your own mind works.
Annie Mydla, Managing Editor
Note: In this article, I mention things that "autistic people do" and experience. This can only ever be a figure of speech, because autistic people are so different from each other. As the saying goes, "If you've met one autistic person, you've met one autistic person."
As an early-round judge in the North Street Book Prize, I see several parent memoirs (or APMs) per year by non-autistic parents raising an autistic child or children, often with common comorbidities like learning disabilities. My autistic profile outwardly differs from the children these memoirs tend to be about—I'm hyperverbal and lack a learning disability. But we share a lot of underlying difficulties in common:
Sensory processing issues
Interoception, receiving and interpreting physical cues from inside the body. The problem can be receiving too much or too little. I receive too much.
Proprioception, the sense of where the body is in space. I receive too much information.
Difficulty interpreting and acting on social cues in real time
A bottom-up processing style
Intense interests in some areas and none at all in many common ones
Monotropism, the tendency to deeply engage with only one thing at a time, leading to challenges with switching tasks and tasks with multiple steps.
Holotropism, having "wide open sensory gates". Body, mind, surroundings, and other people seem more like one thing than separate things.
I tend to identify with these kids a lot.
For this reason, I read autism stories very, very carefully. I'm looking for The One. The APM that inspires me and makes me happy. And you know what? I've been looking for a while.
Maybe if I write a blog post about it, my dream APM will come to me. So here's a list of the top 7 things I'd like to see in an Autism Parent Memoir.
1. The memoirist knows what they don't know
A big dream of mine is to read an APM where the non-autistic narrator fully recognizes they have no idea what it's like to be autistic. Such an APM could start with a look at the double empathy problem and how it works in the life of a non-autistic parent of an autistic child.
Often, autistic people are described as "not having empathy". But the double empathy problem posits that while autistic people do not always automatically understand where non-autistic people are coming from, the problem is just as great with the non-autistic in not automatically understanding where we are coming from.
Here's a practical demonstration of how the double empathy problem can come into play in an APM. I encountered a memoir in which a mom was frustrated that her child "continued to test his boundaries" by going on "unsanctioned explorations" into other rooms, the yard, or any other place his parents didn't wish him to be at the moment. The parents were continually creating barriers with furniture, brooms, and other household objects, which the child would dismantle before leaving the room. This happened frequently despite all the times the parents explained the rules and punished him for breaking them.
To the narrator, the child was obviously "testing his boundaries". There were no other interpretations offered. But the phrase "testing boundaries" shows assumptions. It implies that a) the child is intentionally breaking the boundaries the parent has set up and b) the child knows he is disobeying the parents.
But is "intentional disobedience" the only interpretation? I don't think so. An autistic reader could think of a number of autism-related motivations for the child's behavior. He might be...
Seeking to escape overstimulation in the household or environment
Seeking solitude (often comfortable for autistic people, to varying degrees depending on the person)
Honoring internal demand avoidance. This is different from disobedience because it is not based on the child's desire to thwart the parent's authority. Demand avoidance is an internal need that occurs with no regard to the nature of the demand itself or who/what is making it.
Another possibility is what I think of as "circuit joy". Some autistic children and adults take pleasure in loops and circuits. Given the fact that the parents keep creating barriers out of household items, the child's behavior could be interpreted as showing evidence of pursuing a complete circuit. The parents create a puzzle with their interesting barrier, the child solves the puzzle, and then the parents have their familiar reaction (in this case yelling, scolding, begging, punishing). For an autistic child enjoying the circuit, the reaction of the parents is part of the reward of completion, even when the parents think that their reaction ought to be interpreted by the child as a deterrent.
Am I insisting that any of these motivations were the actual cause of the child's behavior in that memoir? No. And am I saying that as an autistic person, I would know the child better than his parents do? Again, no. But the fact is that there are many motivations which to an autistic person may be very pressing and/or rewarding, but of which a non-autistic parent might be unaware. It would be wonderful to read an APM that resists projecting assumptions on autistic children's behavior in situations where there are other possibilities.
2. The memoirist relates their understanding of their child's inner experience to their own lives
Something I have never seen in an APM, but would seriously love to, is a plotline in which the parent strives to relate to the child on their own terms. Eventually, the parent becomes able to see their own self-identified non-autistic lives through autistic lenses. This happens quite a bit in real life, sometimes to the point where a parent seeks autism screening for themselves. But I've yet to encounter it in an APM.
In that ideal memoir, we might see the parent asking themselves questions like:
My autistic child has sensory needs. But what are my sensory needs as an adult, self-identified non-autistic person? How do light, sound, movement, texture, temperature, and more impact my mood? My ability to focus, switch tasks, complete steps?
Answering questions like this, the parent may realize that they can't stand the breeze generated by their ceiling fan, they dislike working in their office while the neighbor is mowing the lawn, or they become unduly irritated when other drivers leave their high beams on at night. I could imagine an APM in which the parent avoids these sources of aggravation or changes their reaction to them, in the meantime learning how to help their autistic child to avoid their own sensory stressors. It also becomes easier for the parent to write their memoir due to the lack of sensory irritation—and to weave tension and relief through their narrative by using sensory triggers in some scenes.
How are my interoception and proprioception? How do they impact my experience of the world and of myself? Are they making my experience different from other people's, or different than what I'd have liked?
Perhaps the narrator thinks back to gym class in middle school and how they were embarrassed by never being able to catch the ball, or how they still sometimes put both feet into one pant leg even when they are paying attention (proprioceptive issues). Or if they get sick, they can't tell right away, so they always end up leaving work in the middle of the day rather than staying home to begin with (an interoceptive issue). These realizations help them empathize with some of the things their own child has trouble with and also leads them to forgive themselves for their "non-optimal" behavior. The end-of-day headache they've been attributing to working too much on their memoir, they now realize, is actually due to hunger. Their hypo-ability in that interoceptive arena makes them forget to eat. They start using a snack timer while writing and end the day in a much better mood.
What is my level of verbal processing and production on any given day? When I am tired, stressed, or overwhelmed, versus when I am relaxed?
I picture an arc in which the parent often yells at their children in the mornings before school. However, due to learning more about autism, they realize that their own verbal processing needs extra time to "wake up" in the morning. The parent then realizes that they were becoming upset by the noise and demand to respond in the morning—and that starting to yell at everyone was making it worse. Steps could be taken to make the morning routine calmer and quieter for everyone's benefit—especially the autistic child, who also needs a verbal warmup time each day. Later, the parent found that the quiet time in the morning made it easier to transition into whatever they were doing next, like doing their job or working on their memoir.
Do I have a bottom-up processing style, where I see details first and then the big picture, or a top-down processing style, where I see the big picture first and then zoom in on details?
Maybe the parent has always had clashes with their parents, teachers, co-workers, and bosses due to asking too many "nit-picky" questions. The parent learns that they have a bottom-up processing style thanks to researching their child's autism and is more aware of why they need so much information before starting a project. They become more strategic in how they ask questions and also use a broader range of resources to get the answers they need. This experience helps them to replace irritation at their child's probing questions with a sense of the child's desire to please them by really getting things right. The parent also identifies that their detail-loving disposition has been slowing down their memoir-writing process, though it has been a significant strength in writing immersive scenes.
What is my executive functioning like day to day? Do I ever have trouble making or keeping plans, focusing on a single task, or completing tasks? Do I procrastinate (either naturally or to avoid coming up against other executive functioning problems)?
A parent who has always deplored their own inability to concentrate learns about monotropism, and through that, polytropism—the need for a wider variety of topics and tasks in order to maintain their mood and productivity. The parent can then forgive themselves and focus on arranging their lifestyle to fit their needs. It also strengthens a sense of solidarity with their child. They both struggle with executive functioning—just from different ends. And now the parent can reconsider whether they really need to be so down on themselves for having a stop-and-start pattern in writing their memoir.
Do I ever experience black-and-white thinking, difficulties putting information and priorities into a hierarchy, or demand avoidance?
Autism parents often have to deal with stigma and ignorance in other people's reactions to autism. The parent in question has had some negative interactions with fellow parents, leading them to reject the social scene in their neighborhood. But now the parent has learned about black-and-white thinking—the knee-jerk reaction that something is all one way or all another. That leads them to reflect that the neighborhood parents have had a range of reactions, not all of them bad. The parent is now more equipped to interact with the neighbors on a case-by-case basis and be more aware of black-and-white thinking traps in the future, including with their own child and in the process of writing their memoir.
Is changing plans uncomfortable for me? Do I need a certain amount of time to process plan changes? Is my experience different depending on whether it is me changing the plan, or I am subjected to someone else's change of plan?
Let's say the author's family moved to a new house six months ago. The parent hasn't worked on the memoir a single time since, even though everything has been unpacked for at least three months. In the past the parent would have scolded themselves for being lazy. But learning more about the child's autism has given them the awareness that their own brains can take time and bandwidth to process change. A month or so later, they've processed the change and are working on their memoir again.
The questions above, and many others related to autism, affect every human to various degrees. But for autistic people, they and others define our lives, shape our experiences, and inform our priorities, personalities and actions. I'd love to read an APM that has the protagonist transforming their own vision of how their brain works based on what they learn about autistic people's inner experiences.
3. The narrator takes responsibility for the situations they put their child into and what happens next
Memoirs need empathy for their subjects. They need to show curiosity. A memoir is not just a record—it is an exploration. The memoirist takes responsibility for their own point of view and questions it, looking at it from a variety of angles. If the parent-memoirist isn't doing that, then the APM is not a memoir. It is an exercise in venting, self-justification, and editorializing. And no memoir is going to win the North Street Book Prize like that, autism or no autism!
The APMs we receive could do more to zero in on that explorative element, deeply reflecting on what happened and the author's part in it.
For example, I read an APM once in which the parent takes their child to the zoo. Soon, the child begins to chew on their fingers and refuses to budge from the middle of a crowded walkway. The parent tries to get them to stop chewing on their fingers and move along. The child is unwilling and starts to cry. The parent insists, lowers the child's hand away from their mouth, and tries to gently lead them off the path. The child breaks down. People stare and the parent feels judged. The narrator's conclusion to the episode expressed that: My child is such a riddle. Autism makes them act erratically. Fortunately, I'm a patient and caring person.
They may well be a patient and caring person in general. But that doesn't change the fact that they've brought their child to a loud, bright, movement-filled place without any form of protection (ear protection, sunglasses). The environment may be new for the child, which is another hardship for those of us with difficulties with change and hyperawareness of spatiality. These factors inevitably lead to the agony of overwhelm, which we observe in how the child reacts.
I see scenes like this in APMs all the time and always have trouble accepting how the narrator makes the child responsible for what happened, rather than rethinking their own actions: bringing the child to an overwhelming spot without giving them sensory protection or other accommodations. The child has been set up not just for failure, but for physical and mental pain and humiliation. Ultimately, such episodes are stories of a power struggle between the parent and the child, in which the child always loses.
It would be wonderful to see an APM from a parent who was fully aware of these dynamics and took personal responsibility for the situations they put their child into, and what happened next—treating the memoir as an opportunity to investigate rather than simply to vent or editorialize.
4. The memoirist acknowledges the parent-child power imbalance and is careful not to abuse it in their book
Speaking of power dynamics, I would treasure the chance to read an APM in which the memoirist shows awareness of the power imbalance in the parent-child relationship—especially while writing the memoir. As described above, the parent has power over the child's physical experiences. But the parent also has control as a writer, deciding:
How to describe the child inside and out ("Good"? "Bad"? "Sick"? "Inspiring"?)
How to characterize autism (A "battle"? A "superpower"? A lifelong neurobiological condition?)
How to interpret the situations in the book ("My child behaved badly at the zoo" versus "I put my child in a challenging situation, and it was too much")
I'd be so glad to read an APM that examines the author-to-subject power imbalance alongside that of the parent and child.
5. The memoirist demonstrates awareness that actual autistic people might read their book
APMs are often a way for the memoirist to vent and connect with other autism parents. That's wonderful—parents of autistic children need and deserve validation and solidarity.
On the other hand, writing exclusively for other non-autistic parents of autistic children can lead memoirists to write as though no autistic person will ever read their book. As a result of this, the content and language can become exploitative and dehumanizing without the non-autistic writer even realizing what's going on. Autistic readers, though, will pick up on these things immediately.
When I say "exploitative," I mean material that puts the child's most vulnerable moments in the world for all to see. Some exploitative scenes I've read in APMs include depicting the child:
Having a meltdown in a public place
Opening their own diaper and throwing feces around the living room
Fighting (verbally or physically) with teachers, doctors, or other authority figures
Wetting the bed longer into their childhood than their peers
Banging their head on a table or wall
Non-autistic autism parents may relate to these scenes, but is it worth it? The child's privacy has been violated, and any autistic reader who comes across the book will be horrified. Does any child deserve to have these private moments of vulnerability, fear, pain, and overstimulation exposed on Amazon? And what does it say about the parent's feelings about their own child that they would allow that to happen? In contrast, I'd like to read an APM that honor the child's privacy and dignity and shows the parent's solidarity with the child.
APMs that don't anticipate autistic readers can also be prone to using dehumanizing language. For example, I read a book this year where the memoirist called her son a "monster child" and compared him to "the worst situations in life." I respect the author's personal experience of raising their child. Maybe to her, it really did seem like he was a monster. But to go from that internal experience, to publishing a book that characterizes an autistic child as a monster and of autism as a monster inside, is troubling. I could tell that the book was not meant for autistic eyes.
I read too many APMs that characterize autism as something other than a neurobiological condition—for example, "monster". Other phrases put a supernatural spin on autism, calling it a "superpower" or a "curse". A classic is when autism parents are called "warriors" who "fight to rescue" the child (autism is not a war or a case of kidnapping!)
The internal experience of autism is more complex than "fighting" or being a "superhero". Nothing about autism is all one way or all the other, and every autistic person has different struggles and strengths in different parts of life. That's why, when I see this kind of language in a memoir, it's a red flag. I'd love to see an APM that dissects these terms and how they're normally used in memoirs. Meanwhile, there are good resources out there for researching how to use more supportive and understanding language that won't shut out autistic readers:
https://www.amaze.org.au/wp-content/uploads/2020/09/Talking-about-autism-a-media-resource.pdf
https://www.autism.org.uk/contact-us/media-enquiries/how-to-talk-and-write-about-autism
Any APMs that care to critique, satirize, or subvert these labels are so much more than welcome in my life and on my bookshelf!
6. The book calls out ignorance, unfairness, and bigotry in individuals and society
I haven't given up on APMs. In fact, I've seen some good stuff. One of my favorite things to find in an APM is when the author pushes back against all the ways autistic people are misunderstood, belittled, and othered. For example, I've seen memoirs where:
The parent stands up to a therapist who kept referring to autistic children as burdens.
The narrator, a special education teacher of autistic children, corrects a child's homeroom teacher whose beliefs about autism are outdated and prejudiced.
The father of an autistic child confronts a GP who won't let his child wear light-protective headwear in the examination room.
When these episodes happen in APMs, I want to stand up and cheer. They make me feel that the parent might be on my side if I was in such a situation. Which leads me to...
7. The memoir shows solidarity with autistic people
As I look back at this long list, what it really amounts to is a desire for autism parent memoirs to show solidarity with autistic people. It would be wonderful to see narratives by parents who are going the extra mile to be not only autism parents, but autism allies.
And by autism allies, I don't just mean wearing blue on Autism Awareness Day, or having a puzzle piece pin on your hat. I mean letting autistic ways of life start to inform your way of life. Don't take it for granted that it's your right to lead, explain, define. Go our way for a while, and let it change you—and what you write in your memoir.
One personal anecdote before I close. I have a severe light sensitivity and often have to wear sunglasses inside. I'll never forget the joy I felt when, during a Zoom consultation on a crime novel, the critique client put their own sunglasses on in solidarity. I asked him, what inspired you to do that?
Turns out he was an autism parent.
Categories: Advice for Writers, Annie in the Middle
