Autism Out Loud by Kate Swenson

In “Autism Out Loud,” Kate Swenson, Adrian Wood, and Carrie Cariello weave together a tapestry of experiences that feels like sitting at a kitchen table with three wise friends who truly understand the autism journey. Unlike many books on autism that approach the subject clinically or offer one-size-fits-all solutions, this collaborative memoir presents three distinct perspectives of mothers raising sons with varying levels of autism – Cooper (Kate’s son), Amos (Adrian’s son), and Jack (Carrie’s son).

What makes this book particularly powerful is how the authors don’t shy away from the raw, often uncomfortable truths about parenting children with autism. They address topics rarely discussed publicly: the grief that accompanies diagnosis, the strain on marriages, the fear of what happens after parents die, and the isolation that can envelop families dealing with severe autism.

The book’s structure flows organically through thirteen chapters covering the autism journey from diagnosis to adulthood, with each author taking turns to share her unique perspective. This approach highlights both the universality of certain experiences and the deeply individual nature of each family’s story.

Honesty Without Apology: The Unspoken Truths of Autism

Swenson, Wood, and Cariello write with refreshing candor about aspects of autism parenting that often remain in the shadows. Kate’s account of Cooper’s severe, level 3 autism provides insight into a reality that’s underrepresented in mainstream autism narratives:

“Cooper has what’s known as an invisible disability. Meaning he has a condition that can’t be seen by the naked eye. It can be confusing for people and leaves me wondering if we need to look a certain way in order to get grace in this world.”

The authors don’t sanitize their experiences or present only the inspirational moments. They describe meltdowns, self-injurious behaviors, and the crushing anxiety that often accompanies autism. Adrian Wood reveals her initial struggle to accept Amos’s diagnosis:

“This has to be more than just autism,” I said to her. I could hear the desperation in my voice.

I described it to her as something creeping in at random times, grabbing ahold of my boy and serving up an emotional and physical beating until he was barely recognizable to me.”

Carrie Cariello’s account of obtaining guardianship for her adult son Jack – a process that required her to list all his vulnerabilities in court – is particularly heartbreaking:

“From across the room, I watched Jack’s face change. He looked at me in surprise. My stomach sank.

In an attempt to safeguard his health care, his finances, his general well-being, we forgot to safeguard his most tender heart.”

Beyond Awareness: The Reality of Severe Autism

One of the book’s greatest strengths is its unapologetic focus on severe autism – the 26.7% of people with autism spectrum disorder whom, as Kate points out, are rarely represented in mainstream media depictions. The authors dismantle the “autism is a superpower” narrative without diminishing their sons’ worth or uniqueness:

“Autism is not a gift. No one hopes their baby is born with it. No one hopes their son or daughter will struggle with communication, social cues, or isolation. No one hopes they will one day stand in a courtroom and appeal for guardianship.”

Instead, they reframe success and celebrate achievements that might seem small to outsiders but represent enormous victories for their children:

“Cooper eats popcorn now. Which is supercool because we have family movie night every Friday and he wants to participate.”

“He held the door for me the other day when my hands were full. He’s learning about wearing deodorant. He puts his shoes and coat in the closet every day.”

The Impact on Family: Marriage, Siblings, and Self

The authors explore how autism reshapes entire family systems. Kate Swenson’s account of how autism strained her marriage to the point of divorce (they later remarried) offers both caution and hope:

“The stress on our marriage felt insurmountable at times. The truth is, the day ‘Cooper has autism’ was said out loud, we were expected to be experts. We were expected to know exactly what to do in an unbelievably hard situation.”

The chapter on siblings provides valuable insight into how neurotypical children navigate growing up alongside autism. Sawyer, Kate’s second son, experiences what the authors call “leapfrogging” – surpassing his older brother in milestones and development. This creates complex emotions that the authors address with sensitivity and wisdom:

“I’ve watched him tie his older brother’s shoes. And wipe his mouth. Buckle his seat belt. Hold his hand as he leads him through a parking lot. Never forced. He just does these acts of kindness. Because he loves him. The loyalty is fierce.”

Limitations and Critiques

While the book’s honesty is its greatest strength, at times the collaborative format leads to repetition of themes and ideas across chapters. Some readers might find the transitions between authors jarring, as each brings her distinct voice and writing style.

Additionally, while the focus on boys with autism reflects the authors’ experiences, it doesn’t capture the often different presentation and challenges faced by girls on the spectrum. The book might have benefited from acknowledging this limitation.

The authors also occasionally present their personal spiritual perspectives without fully acknowledging other worldviews that might frame the autism experience differently. This may resonate strongly with some readers while potentially alienating others.

Final Assessment: A Voice for the Unheard

“Autism Out Loud” fills a crucial gap in autism literature by giving voice to experiences often silenced or overlooked. It serves multiple audiences simultaneously:

• For parents new to autism: A roadmap for navigating diagnosis, education systems, and emotional terrain
• For experienced autism parents: Validation and companionship from others who understand
• For families and friends: Insight into the daily realities of autism caregiving
• For professionals: A window into the lived experience beyond clinical settings

Kate Swenson’s previous book “Forever Boy” (2022) focused solely on her family’s journey with Cooper, while “Autism Out Loud” broadens the perspective with multiple voices. This approach mirrors other collaborative works like “Voices from the Spectrum” edited by Cindy N. Ariel and Robert A. Naseef, though with a tighter focus on the maternal experience.

The book ends not with neat conclusions but with questions about the future, reflecting the ongoing nature of the autism journey. As Kate writes:

“I have no idea what the future holds for Cooper or me or our family. I know it will be filled with messy, complicated, sometimes even painful moments. But I also know it will be filled with joyful and beautiful moments too. And all we can do is live each moment fully and into the next.”

Who Should Read This Book?

• Parents of newly diagnosed children seeking honest guidance
• Family members wanting to understand autism’s impact beyond stereotypes
• Educators and therapists looking to comprehend family experiences
• Anyone interested in authentic accounts of neurodiversity

“Autism Out Loud” is not always an easy read emotionally, but it’s an essential one. The authors succeed in their stated mission: ensuring no parent feels as alone as they once did. For those walking the autism path – particularly with children who have higher support needs – this book will feel like finding your tribe. For everyone else, it provides a profound education in both the challenges and unexpected joys of loving someone with autism. This is autism, displayed honestly and without filters – out loud, just as the title promises.