When a Doctor Poorly Delivered Our Diagnosis, This Is How I Responded

“I have some very bad news to tell you.”

Those were the words that started the avalanche. The head psychologist of the early intervention program in our county said them to us after our 2-year-old son, Coby, endured a 4-hour-long evaluation. As my husband and I sat in the room in stunned silence, the doctor continued: “Your son is severely autistic and mentally retarded.” I’m sure she said other things after that, but neither of us actually heard them.

After a solid week of crying, I decided to pull myself together. Whatever this “thing” was called didn’t matter. What mattered most was that we would get our child the help he needed and try to prove this psychologist wrong. So we started speech and occupational therapy and lots of work at home. When Coby was 3 years old, he entered the school system and was incredibly lucky to have the most amazing teacher on the planet. We slowly realized our Coby was actually smart and had a super high IQ. Did he still have autism? Sure, but so what?

Fast forward ten years, and our younger son, Liam, was in the same boat. I saw the signs early on, and I was ready. When we went in for the evaluation, I was ready to fight. But then something incredible happened. A calm and peace came over me. There was no need to fight. This little angel who was my son yesterday, is still my son today. The diagnosis didn’t change a thing. I said the word over and over again: “Autism, autism, autism, autism…” I waited for the tears to come, for the period of anger and mourning, but they never did. I learned something important: Acceptance. I also learned that the experts are not always right about their prognosis. They get a few hours with a child who may be tired, frightened or just having a bad day. My children have autism, but autism definitely does not have them.

unnamed (80)

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Autism Spectrum Disorder

5 Truths I’d Tell My Past Self About Autism

It’s been 10, 11 or 12 years since my son’s autism diagnosis, depending what you count as the start date (was it the day he was proclaimed “developmentally delayed,” “PDD-NOS” or “autistic”?). No matter the date, I’d still tell my past self these five truths: 1. Professionals will stop treating you like you’re crazy for thinking your [...]

What the Doctors Didn't Tell My Parents the Day They Got My Diagnosis

Dear parents of children diagnosed with special needs: please don’t give up. On the day of my diagnosis, there was so much they didn’t tell my parents and me. They told us everything I likely wouldn’t do. They evaluated and pointed out my struggles and challenges. Appointment after appointment, my parents heard and had to be [...]

Why This One Little Word From My Son’s Teacher Meant So Much to Me

I was going through my son Matthew’s backpack when I saw an envelope in the bottom of it. Immediately, I knew it was a “thank you” card from one of his teachers or teacher assistants.  Totally not necessary since my Christmas gifts to them are my way of saying, “Thank you!”  I admit I read [...]

What I Would Have Told Myself The Day I Was Diagnosed With Autism

Dear Kerry, When you arrived at the hospital today, you may have thought it was just for another checkup. Over the past year now we have been very used to these visits. Going to doctor after doctor throughout the tri-state area, some with funny elephants on their walls and others with what feels like an [...]