A Mother’s Journey To Acceptance Of Her Son’s Autism Diagnosis

A memoir full of pain, sorrow, anger, beauty, love, and joy

With a word, a psychologist took the road map Kate Swenson and her husband, Jamie, had imagined for their son and altered its course.

Autism.

“And isn’t it just that? A word on a piece of paper. It doesn’t have power. It’s not something to be feared. It’s not a death sentence. And it certainly doesn’t transform a child when said out loud.” -Kate Swenson

Then why did she feel different walking out the room after she and her husband had received a diagnosis for their three-year-old son, Cooper?

Why did it feel as if the word autism had been stamped on their foreheads? It didn’t feel fair to place such a permanent label on her little boy.

She had seen the signs and blown the whistle. And she was right. But it was a bizarre feeling to be right when all you want is to be wrong.

Processing an autism diagnosis

I’ve read 15 to 20 autism memoirs as the dad of a teenage autistic son, and Swenson’s is the best at showing the emotions parents go through after receiving a diagnosis for their child: denial, anger, bargaining, and disappointment in order to reach acceptance.

Swenson’s story shows how two parents can be at different phases of grieving their response, one in denial and another feeling anger, at any time, and how a husband and wife can have different responses to a life-changing event.

This is a common pattern for many parents of autistic kids, and a subplot in her book is the impact two people grieving in different ways and separately has on their own relationship — and, not surprisingly, it has a huge effect.

“Two people who love each other can walk parallel paths of hope, grief, and reality that never intersect.” — Kate Swenson

To be clear, Swenson says she never grieved her son being autistic, but she was grieving the loss of expectations that she and her husband had as parents and accepting their child for who he is.

She is grieving the milestones she won’t be able to celebrate in her son’s life. A mom friend of hers calls these paper cuts, those things her son will not be able to do that are like wounds that reopen when she sees another kid doing them.

Reacting differently to a diagnosis

Swenson’s memoir reminded me a bit of Joan Didion’s The Year of Magical Thinking in the way she shows grieving is a non-linear process that doesn’t occur at the same pace for two people.

Her husband remained in denial for a long time. He wanted to keep living their pre-autism life. But Swenson knew she couldn't act like nothing had changed — because of her son’s challenges.

“He expected me to cry my tears, dust myself off, and keep living. He didn’t understand that I couldn’t do that. My heart was broken and his wasn’t.” — Kate Swenson

She couldn’t just dust herself off with her son’s development frozen or going backward. It was a reminder of the milestones he wasn’t reaching. Living was hard because she had to lock down her house because her son eloped out the door.

There was also the obsessive search to fund anything to help her son while asking “why our family?” as her world turned into nothing but autism 24/7; it became an all-consuming force permeating its way into every aspect of her life.

There was a hope of finding new therapies or diets and disappointment when they failed; the bleak prognostications by professionals without showing any compassion; and the daily fatigue from caring for a son who expressed frustration with aggression taken out on family members.

There was the feeling of waiting to hear your son utter his first word; the worry about your son not being able to communicate his needs; and the inability to know why your child fills the bathtub with household objects.

There was the feeling of having to learn about autism on the fly to parent your child and to have to adjust your worldview to a new reality.

Joy amidst sorrow

But through it all Swenson keeps loving her son fervently and seeks to support him and come to grips with how to reframe her expectations of his life and what her family life will look like — and she is able to see the joy her son exudes.

This is one of those books you can’t put down and one that leaves an impression on you long after you’ve read it, and you don’t have to be a parent of an autistic child to enjoy the memoir.

It is a story of triumphing against great odds, and there are lessons for parents of autistic kids and neurotypical readers. You will feel many emotions reading Forever Boy because this is the road Swenson took to reach acceptance.

She feels her feelings, and you feel them too.

You ride the roller coaster she has been on for the last ten years with her son.

And you will see that Cooper deserves to have his place in the world too.

Thanks for reading my story.

Swenson’s book is available on April 5.

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