From Denial to Acceptance: Parenting After an Autism Diagnosis
Reduce the time from shock to acceptance and everyone benefits.
Each parent has a unique experience when they realize their child is different. For most people, it isn’t a time of rejoicing.
It usually starts with suspicions because the child’s behavior isn’t typical.
These suspicions lead to a period of consideration and denial, perhaps with doctor’s visits, or discussions with other parents.
The emphasis is on denial because an autism diagnosis is considered the end of the world, or at least the end of parental dreams.
The Moment We Knew He Was Autistic
We had been noticing our son was unusual since he was a baby. Most notably, we were dismayed by the lack of eye contact.
He refused to look at us.
No matter what we did, he wouldn’t hold our gaze.
We were new parents, but we knew that wasn’t right. We carried on, hoping it was a phase he would grow out of.
One day, my wife came across a magazine article that listed the signs of autism. My son checked every box.
My wife immediately knew.
She showed the article to me, and I immediately knew.
We didn’t take it to be good news.
R.E.M. gets it.
My wife and I didn’t spend much time in denial about his condition, only because his condition was simply undeniable.
When didn’t get a formal diagnosis for almost a year, by which time, it was just a formality. We already knew.
Diagnosis Shopping
Many parents get second, third, or more opinions because they hold out hope some doctor will confirm their denial story.
We know of one family that received three diagnoses of autism. The fourth doctor saw the pattern and gave them a diagnosis of Ausperger’s Syndrome with Autism-like Tendencies, whatever that means.
This placated them because, in their minds, it meant their child wasn’t autistic.
The lengths to which people go to sustain denial amazes me.
The Incipient Error
We didn’t know it at the time, but in that moment of acceptance of his condition, we made a huge mistake that took us about 15 years to correct.
We thought this was terrible news.
It was not.
It certainly wasn’t what we wanted. No parent wants to discover their child has limitations, serious limitations on his ability to contribute to the world or even care for himself.
We had no shortage of friends and family willing to confirm our worst fears that our life was over and we needed to eat a turd.
We found support groups that further reinforced that we had endured this awful tragedy, and someday if we were lucky, we would develop a taste for turds and choke them down as a badge of honor.
I couldn’t get myself to do that. I figured there must be another way.
This mistaken interpretation of our circumstances was an incipient error.
If I had known then what I know now, 15 years of heartache for my family could have been avoided entirely.
If you want to really explore the power of incipient ideas, I suggest you watch the movie Inception. It’s incredible, and it makes the point I’m pointing to here better than I ever could.
When some special needs parents read the post above, they react angrily. They protest indignantly that their experience is different, and that I don’t understand their challenges.
Of course, that is true. I don’t know their experience. I only know mine, and it wasn’t an easy journey.
You choose how you feel about your special needs child
But I do know that they have control over the interpretation of their experience, and if they choose to apply a strongly negative interpretation, then they will endure the inevitable suffering.
It’s simply not the choice I make, and neither does my wife. And no, we are not in denial. There is no awful interpretation of reality we must embrace.
I’ve seen it argued that parents should process all of their emotions honestly as if a positive interpretation were dishonest or even harmful. Total nonsense.
Some believe it’s dangerous to minimize the grief for our lost dreams. Was there some value in the attachment to a parental fantasy? What’s the danger here?
Should we also cling to our worries about the future? Is there value in that?
A positive interpretation of your child’s condition is essential for your emotional health and for your child’s.
Grief should be minimized, as should attachments of all kinds. Denying reality serves no one.
Welcome to Holland
Like most special needs parents, I was sent the writing Welcome to Holland. It’s beautiful writing that helps put things in proper perspective.
It provides an interpretation that isn’t negative, which is a plus.
It’s been criticized: The trouble with “Welcome to Holland”
In different ways: Why I hate "Welcome to Holland"
For different reasons: What “Welcome to Holland” Gets Wrong
Many times: Autism Is Nothing Like Going to Holland
But its basic message has stood the test of time and unending criticism. Just because you didn’t get the parenting experience you dreamed of, doesn’t mean your experience can’t be beautiful in its own way.
Discover the beauty, and the problems become less challenging, joyful even.
