On a recent visit to my parents, I offered to help drain a pot of noodles for lunch. “No,” my dad said. “You’ll burn yourself,” and shooed me away. I was 4 going on 46. Always.
Some parents navigate the awkward transition between parenting children to parenting adults better than others. The shifts are notoriously subtle. Some miss the signs and fail to make the turns altogether.
The road is even more treacherous for special-needs parents: the turns are steeper and the stakes higher. Our autism awareness journey began in 2004 when our son was diagnosed at age 2. For eighteen years, his dad and I called all the shots: where to move for the best SpEd programs, which therapists and lawyers to hire/fire, what diets and treatments our son would consume. Everything.
I never imagined our toddler would someday be toilet trained, speak in sentences, or manage his own wallet and laundry—much less hack into our devices in multiple covert attempts to open his own social media accounts. Yet here we are. Truly, the days were long; the years cruelly short. Suddenly, we were parents of an autistic adult, a rude awakening that hastened several aha’s and mandatory shifts.
Raising Future Adults
Like every parent, special-needs parents hustle to work themselves out of a job, albeit with the implicit understanding that our jobs may require overtime (and retirement looking categorically different). Prevailing literature focuses on children, offering comparatively little in preparation for “the cliff” into adulthood. I’m thankful for resources like LOMAH that challenge me to parent with the end in mind, versus inadvertently infantilizing and reinforcing learned helplessness. Surrender is hard for this recovering control-freak and Daughter of Eve. (“Sweetie? Come eat this. NOW.”)
Learning from #ActuallyAutistic Adults
The lived-experiences of #actuallyautistic voices offer an invaluable window into our child’s mind and potential, especially if they are non-verbal. I wish I’d done more of this sooner. Advocates like Dr. Temple Grandin, Dr. Stephen Shore, and Christian leaders like Dr. Lamar Hardwick, Ron Sandison, and Lori Sealy have been my go-to’s for first-person insight.
Many autistic self-advocates have upended several of my parenting paradigms. Challenging perspectives on certain organizations, logos, or interventions can be unsettling. (What child doesn’t challenge their parents’ ideas?) “If you’ve met one person with autism, you’ve met one person with autism.” Each perspective is valid and worthy of honor and consideration:
- Guard our child’s privacy and dignity. Don’t shame them by complaining, oversharing vulnerable moments, or posting embarrassing photos online.
- Celebrate neurodiversity. Instead of obsessing over a cure, develop their strengths instead of defaulting to playing defense. Presume competence. Don’t underestimate what they can do and all they are becoming.
- Parenting an autistic child (aka “autism mom”) does not make us members of the autism community, but adjacent from which we can serve as allies. They are the main characters of their story. Ours is a supporting role.
- Many self-advocates prefer “autistic” vs. “person with autism” (person-first language), and to #SayTheWord disability vs. special-needs. Non-autistics should defer to how autistics prefer to self-identify.
When children are young, we learn to interpret their communication cues. As they mature, we must respect their agency and increase in following their lead. We need guidance and leadership from the real experts in autism: themselves.
“Special Needs” vs. Disability
Every child needs education and support in ways appropriate to their learning style. They also need to be accepted and celebrated for who they are, as they are. Autistic kids are no different.
Meanwhile, special-needs parents need extraordinary support, encouragement, and hope. I know I do. For years, I was unable to accept the permanence of autism as a lifelong disability vs. a condition to be “fixed,” with enough therapy, prayers, and desperation. I’m also still working to uproot my own internalized ableism, impatience, and bouts of despair.
For our son, being autistic is all he’s ever known. Autism is his normal. When God esteems him as, “wonderfully and fearfully made,” my child isn’t broken. I am. Our son doesn’t have out-of-the-ordinary, exceptional needs. His mother does. I’m the one in chronic, special need of grace.
From Awareness to Acceptance
Thanks to decades of global advocacy, the world has become aware of autism. As our children develop and flex their independence, and as the movement and language for autism evolves from awareness to acceptance, parents must adapt and change with it.
Our children will develop dreams and pursuits apart from ours. They may even accrue differing recollections of our history together, benefitting from the positives, and resenting (i.e. needing healing from) our mistakes.
As we transition from Controller of All The Things to (on-call) consultant, our job is not to speak for our children or dictate every move, but to empower them to advocate for themselves, flourish, and unleash their unique contributions into the world.
Our world will accept, celebrate, advocate, and create space for autistic excellence no more than we do. Special-needs parents, let us model the change we wish to see.
The above content was reprinted with permission from Parent Cue.
Diane Dokko Kim
The Parent Cue Blog Contributor
Diane is a parent to a child with multiple special needs, disability ministry consultant, speaker, and author of Unbroken Faith: Spiritual Recovery for the Special Needs Parent (Worthy, April 2018).