His words struck me.
I asked myself, “Have I ever felt this way?”
It’s been years – years that represent the lifetimes of my two youngest children – since my husband and I were confronted with the same statement, “Your child has autism spectrum disorder.”
Had I buckled under the weight of this life-altering utterance?
Had I questioned the fairness of it all?
Did my dreams for my children die?
Our sons are the size of men now. We have been living with the realities of autism spectrum disorder for so long that I hardly remember not living with it. Though my sons are both teenagers, their demeanor remains innocent and child-like. Their simplistic and yet embracing view of this complicated world is endearing. And yes, refreshing.
Thus, when I listened to this father describe his children’s autism diagnosis as “terrible and wounding,” I found it difficult to relate to his experience.
Because, for me, the terrible and wounding aspects of autism spectrum disorder is not the disability itself.
What has hurt and scarred me the most over these many years are the judgmental, hurtful, thoughtless, and condescending words of others. Harsh words have been hurled from every part of life – from doctors, dentists, and other experts and specialists, from teachers, from grocery clerks, from restaurant go-ers, from airline attendants, from passers-by, and from all types of strangers.
Judgments like, “Why did you bring them here? You should have never moved to South Africa.”
Assertions like, “He will never learn.”
Condemnations like, “Can’t you control him and make him be quiet?”
Questions like, “Why did you think you could bring him for teeth cleaning? He is untreatable.”
Scoldings like, “Why haven’t you taught him how to do this, yet?”
Spurners like, “I can’t take this kind of child. He doesn’t belong here.”
Accusers like, “You understand that your genetics caused his autism and made him like this!”
Rejecters like, “Don’t bring him back.”
Countless silent stares and expressions from passers-by like, “What is wrong with him?”
And even in autism circles like “Leave your faith out of it. We don’t need to hear how God helped you.”
Every listed statement, question, and expression cut my heart in half and laid me flat at times. And every word emanated from a stranger or someone who really didn’t know or care all that much for my children. According to them, my children were a problem.
So, when I listened to the father describe his initial reaction to his children’s autism diagnosis as ‘terrible and wounding,’ I was sad. This is what many of us hear about autism, isn’t it? Autism is something to dread. Autism is a problem. Autism is a curse. And ultimately, autism must somehow be eliminated. Autism needs to be managed, solved and cured. Why? Well, in order to make life easier and better for both the child and his family – and the world.
But wait a minute.
Is this the most helpful narrative?
In the center of this discussion, judgement, ridicule and assertion is a child.
This is a child who is deserving of our love, our care, our attention, and our delight.
And our protection.
Because for me, when I observe and interact with my children – both diagnosed with autism spectrum disorder – I don’t view them with solely autistic lenses. I see my precious boys. They have been created in the image of God. Over the course of their lives, each of my sons has displayed the works of God in glorious, too-numerous-to-count ways. There is purpose and promise in their lives. Joyfully, these two boys encourage me to walk closely with my God. Jake and Caleb expect their God to act on their behalf and answer their prayers. And they pray until He does.
And why shouldn’t they?
The Lord replies, “I have seen violence done to the helpless,
and I have heard the groans of the poor.
Now I will rise up to rescue them,
as they have longed for me to do.”
The Lord’s promises are pure,
like silver refined in a furnace,
purified seven times over.
Therefore, Lord, we know you will protect the oppressed and vulnerable…
New Living Translation, Psalm 12: 5-7a
The Lord promises to rescue and protect my children – the oppressed, the vulnerable, and helpless – in a cruel, condemning world.
I, too, must do my part. Caleb and Jake’s expectant faith and sure trust in their God emboldens my conviction to pray for them for today and for tomorrow.
I would like to note that Caleb and Jake heard this man call his children’s autism diagnosis, “terrible and wounding” too.
When I asked them how they felt about the man’s words, they both shrugged. Jake and Caleb said that his words didn’t affect them. I pondered their reaction and wondered. Is it because John and I along with the circle of people in their lives who love and accept our boys, have helped them accept themselves?
Could it be that a stranger’s words have no ill effect upon Jake and Caleb because they feel secure, safe, and loved for who they are by those who matter most to them – their God and their loved ones?
I can learn much from their example. A stranger’s words need not inflict so much pain upon my heart when I know how loved my children are by their Heavenly Father.
Caleb and Jake continue to teach me so much about life and about myself.
And as Caleb and Jake learn and grow in Christ, I can learn and grow with them.
And what about that man who first reacted with sadness over his children’s autism diagnosis? I certainly do not begrudge him for his initial reaction. We all work through life and the circumstances we face as best we can.
Well, in time, the man’s autism family story changed. He loves and cherishes his children too. They are not a problem to solve. They are children to be embraced, nurtured, protected, and loved.
Like John and me, this father understands that our greatest role to play in our children’s lives is to love and cherish them – forever. This is the autism narrative we desire to share with all who will listen.
In honor of our children, Jake and Caleb, will you help us transform the autism narrative to one of love and acceptance?
Do you know a family with autistic children who needs your love and your support?