Review by Meaghan Krazinski, Syracuse University, Email: mkrazins@syr.edu
Keywords: essays; autism, neurodivergence
Parents of Autistic children embark on a journey defined by mixed messages in media, society, and among professionals. It is against this milieu that Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew about Growing Up, Acceptance, and Identity accomplishes an Autistic narrative exploration and a work of advocacy. Jess Wilson writes, “[t]here is no greater resource for neurotypical parents of Autistic children than the members of their own community” (p. xi). The structure of the book embodies this premise. Edited by members of the Autistic Women & Nonbinary Network (AWN), Emily Paige Ballou, Sharon daVanport, and Morénike Giwa Onaiwu; Sincerely, Your Autistic Child uses scholarship to advance the plurality of Autistic voices as knowledge creation and community. Onaiwu is a PhD candidate whose work centers around inclusion, intersectionality, mental health, autism, neurodiversity, and ending HIV stigma; Ballou is an Autistic queer woman from the Midwest who works as an Off-Broadway stage manager and a contributor to other publications; and daVanport is the founder and executive director of AWN. Published by AWN, the book is dedicated to the Autistic community (“those we’ve known and those we haven’t”) and to Mel Baggs, contributing author and self-advocate who died before the text’s publication. It is with this chorus of voices that Sincerely, Your Autistic Child is an expression of solidarity, recognition, remembrance, and imagination.
The book is arranged into three sections of topics and life stages (“Early Memories, Childhood and Education”, “Acceptance and Adaptation”, and “Intersectional Identity and Finding Community”), with each entry building on rhizomatic themes. Sincerely, Your Autistic Child interweaves inner and social worlds; an alternative to the compartmentalized clinical gaze that inundates parents. Sincerely, Your Autistic Child celebrates the joys of Autistic individuals but remains grounded in everyday experience. Haley Moss reminds parents, “It’s not your child’s job to set the world on fire, but to simply change perceptions one person at a time” (p. 75), asking parents to be curious about their child’s abilities and interests and to resist labeling or pathologizing them. The book invites readers into a relational mode of support; asking parents to celebrate Autistic life, perspectives, and communities; embracing a sense of curiosity without fear. While some of these concepts may be germane to those rooted in Disability Studies, the intended audience is broader, making this book an accessible text for those without pre-existing knowledge of Disability Studies.
The authors describe how they came to understand who they are, how they move through the world, and the community they belong to. Sincerely, Your Autistic Child is a call to parents to embrace their child’s perspective, values, identities, and needs. Forshaw’s “A parent’s guide to being transgender and Autistic” provides both overall approaches and specific suggestions for parents (pp. 177–181). Even while providing concrete strategies, the authors do not essentialize Autistic children, but instead emphasize the need for parents to stay open to the ways in which their child is unique and may change over time. Behavioral support ideas are more responsive and compassionate, tending to explain root cause or deproblematize the behavior. Cruz writes, “…roll with things and keep an open mind, it’s easier to see how certain expectations you have are just social constructs. When you challenge why certain manifestations of autism bother you, you’ll see that it’s society’s rigidity for how we should act and behave that’s the issue” (p. 165).
The authors reiterate that life as an Autistic person is one of gifts and challenges, but much of the pain lies in unnecessary and violent efforts to enforce neurotypical expectations. “Early Memories, Childhood and Education” grounds the reader’s understanding of autism as embodied. Karen Lean emphasizes, “understanding the sensory neurological landscape is central to understanding autism,” noting that disregarding this can cause Autistic individuals to tolerate the intolerable, writing, “Almost 40 years later, I tolerate discomfort that I should put a stop to [it]” (pp. 48-49). Authors discuss navigating sensory experiences and explanations for behaviors that are often misattributed, characterized as defiance rather than an unmet need. Jane Strauss writes, “[t]he groupification of society results in challenges for any person who has sensory issues or does not like change,” (p. 13). This disrupts the way non-Autistic authored texts often use the DSM categories as filters of interpretation of the Autistic experience. Instead of compartmentalizing sensory domains and interpersonal, the authors both address and challenge the construction of these categories.
The value of environmental support and dismantling meaningless neurotypical expectations are prevailing themes as the book grapples with widening social realms. Many authors suggest interrogating the driving values before implementing a particular parenting strategy. Kassiane Asasumasu writes, “[t]here are no ‘grown-up police’ who will go around making sure no one uses more than five sticky notes a week,” (p. 25). Some authors discuss approaches to competence that may seem paradoxical to non-Autistic parents and educators. Mel Baggs references Donna Williams, writing “the more straws you remove from our backs, the more capable we become” (p. 105). Others describe the processes by which Autistic children lose parts of themselves conforming to these societal expectations, as well as the challenges that many face in growing up. Many of the authors speak directly to the ways in which neurotypical expectations and rigid ideas about linear processes of progress prevent Autistic children from being able to demonstrate their strengths. Amy Sequenzia writes, “my world was ever expanding, but I was being pulled back from it because everyone wanted to make me do and react to things as if I could experience them like neurotypicals do” (p. 113). Authors ask the parents to set aside what they think they know about gender and sexuality and allow their children to explore and create their own understandings of themselves, rather than impose societally constructed labels. A theme throughout the book is acceptance and unconditional love, as well as an acknowledgement of the hardships Autistic children can face in a culture that may not support or recognize who they are. Authors discuss what makes a good life for them, and how it may look different than the preconceived notions parents have. Amethyst Schaber writes, “knowing an autistic adult who prioritized their happiness over typicality would have meant the world to me” (p. 92). Recurringly recommended is linking children to Autistic adults leading quality lives. Stitching the community together in this way is some of the advocacy work the book produces as it asserts Autistic children need Autistic role models and mentors; in other words, a future they can see themselves in.
The book situates the reader as in dialogue with a broader community, some authors addressing a larger intersectional sociopolitical and cultural context. Hegemonic normality is connected to the violence at the Judge Rottenberg center and subsequent calls for parents of Autistic children to mobilize towards social justice. Lei Wiley Mydske writes, “[a]s the parent of an autistic child you cannot afford to be neutral” (pg. 31). In the section, “Intersectional Identity and Finding Community,” the authors reflect on the ways autism and identity is raced, gendered, and classed, describing the way barriers for Autistic children who are multiply marginalized are systematically deployed in educational, social, and clinical settings. This section addresses issues such as bullying, mental health, and how Autistic individuals face stereotypes that comingle with race and gender. Lydia X.Z. Brown writes about how instead of being acknowledged as an Autistic person by the neurologist as a child, they were labeled with reactive attachment disorder attributed to time spent at a state-operated orphanage. Stories like these explain how race, gender, and other identities give certain individuals access to an autism diagnosis while stigmatizing others (p.185). Rodriguez addresses the ways in which police encounters are doubly risky for individuals who are BIPOC and Autistic (p. 171). Parents are not able to read the book passively. They must participate and insert themselves into the broader community as they learn about the experiences and perspectives presented. As HW asks, directing parents to personally connect to systemic ableism, “What are your own barriers?”
Sincerely, Your Autistic Child is about the expertise of Autistic voices and about parents entering into the practice of listening to Autistic adults. In this sense, reading the book is a personal, social, and political practice that educators will find useful as well. Readers come away with answers but also new questions, as the gift of the book is to embrace the journey, and relationship. Dispositions that enable parents to engage in this relationship; curiosity, celebration, community, and acceptance are cultivated by text. Sincerely, Your Autistic Child fills a gap in the literature for parents of Autistic children, disrupting fear-based notions of autism, while maintaining the plurality of experience. The aims of the text are not found in a particular voice being the singular voice of all the Autistic community, but in the cacophony and the social practice of the book itself. That is, the conversation between parents of Autistic children and their community.