My son has always been an autistic child—his diagnosis changed my world, not his

I’m an incessant daydreamer. It’s easy to imagine perfect scenarios where I always say the right thing and my hair looks fantastic. My dreams allow me to right wrongs, find that pithy comeback and save the world on a regular basis. While pregnant with my son it was easy to slide him into those dreams. I would happily hand the world-saving reigns over to him, and naturally he would place one hand on my shoulder and say, in a voice ringing with sincerity: “I owe it all to my Mother.” Then everyone would clap.

When I was asked if I wanted a boy or a girl I would say, “I just want a healthy child.” Secretly I know I sort of wanted perfection. A child to be a perfect version of my partner and myself. A child with height (I am lacking), athletic ability (again, lacking), and a heart big enough to save the world—all wrapped up with a little bit of cheekiness (my contribution). My son is tall, he enjoys hurling himself off various things and saying “ta-da!” when he sticks the landing, he loves fiercely and quickly, and is generally understood to be the epitome of a troublemaker. He’s also autistic, and therefore, according to general society, not a “healthy child.”

A strange thing happens when your child gets an autism diagnosis. The world around you restructures itself. Your relationships shift, goals relapse and realign. The people around you reveal themselves, for better or for worse. The only constant is this kid you’re attempting to parent. He is the only one unaware of the seismic shift undertaken on his behalf.

He has always been an autistic child. There was never a moment when he was not autistic. Everything he sees in the world is viewed through that lens—everything he has eaten, loved, touched, watched and engaged with has been through the ability of his autistic brain.

And before the diagnosis, you never knew. Sure, there were issues. That’s why you began asking questions. This wasn’t the expected answer though. It seems you have always been raising a child on the autism spectrum. You just didn’t know. Now you do know, and for some reason that changes everything.

His future, once bright, is now spoken about in soft voices laced with hesitation, no more gruff proclamations of, “Well he certainly knows what he wants! Har har har!” Now he is showing signs of obsession and it needs to be managed. He needs to be managed. He doesn’t need play-dates, he needs social-skills therapy. You don’t need a drink with friends, you need respite.

There is the tick-tick-tick of early-intervention time slipping away plus he needs a signed plan and he needs it yesterday. There is a cacophony of meetings, appointments, reports and sessions. Through all of this, your son lines things up, whispers words from beloved books over and over, and places his palm on your face when you cuddle him to sleep. Your life is no longer a solid rock—it is shifting sand and you don’t know what to do, but you can hear him breathing in the dark and you love him. You love him.

I just want a healthy child.

The phrase I once thoughtlessly uttered came back to settle in the depths of my mind. Slinking around like a guilty shadow. He wasn’t the child I imagined. Parents of autistic children are often told that the time of diagnosis is difficult.

We are told it’s okay to grieve the life we’ve lost. It’s okay to grieve the family we no longer have, or the future that’s disappeared somewhere in the mire of health care paperwork. It is, essentially, acceptable to grieve the loss of a child while that child sits beside you making derogatory remarks about your knowledge of construction vehicles. Agencies handed out booklets stating grief was normal.

Yet, when I thought about it, I wasn’t grief I was feeling. It was remorse and anger. I was never entitled to a child to complete my version of the perfect family. I was remorseful I’d ever placed that burden on him. I didn’t bring a child into my life to heal my wounds or fulfill my various forgotten destinies. I am here for him.

I’m not entitled to him, but he is entitled to me. He is entitled to be loved and accepted, to have his fears and dreams acknowledged. To be a complete person in himself, secure in his worth and proud of his capabilities and talents. I was angry for what my child had lost. A boy filled with potential had regressed to various scorecards in filing systems tucked away in agencies.

Jim Sinclair, an autistic adult, said in a speech to parents of autistic children entitled Don’t Mourn For Us that when parents say they grieve for their child, what the child hears is that the parents wish for a different child, a non-autistic child. Imagine the pain in that realization. Sinclair went on to say about understanding and loving an autistic child: “Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.”

My son never lost his potential when he was diagnosed. There was nothing taken. He is still a boy with a bright future. However, it’s his future now, not the one I would inflict on him. There are many autistic adults who are happy and successful, who live fulfilling lives without reference to scorecards in filing cabinets. Yes, autism requires accommodations, but that doesn’t make him any less a bundle of potential than any other 6 year old desperately trying to feed their broccoli to the cat.

When I was pregnant with my second potential troublemaker and I was asked what I wanted, I never said I wanted a healthy child. My “unhealthy” child was perfect, he deserved to be a part of the world and our love and acceptance of him was complete. I would instead, smile and say, “I just want a child.”

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