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When I Found Out My Son Is on the Autism Spectrum

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One month ago I was in the family doctor’s office to talk about my son and the challenges we are having — to ask for help.

My son is 4-and-a-half years old. He is a gorgeous, white-haired little angel. He likes the color blue. He doesn’t like clothes. He doesn’t want to play with other children. He likes sorting things by color. He likes letters and numbers and fireman Sam. He has struggled with potty training. When he is upset he can run off and disappear, both from our home and in public places. He can have powerful meltdowns — especially when we are going somewhere or when plans have changed at the last minute. When he is happy he has the most beautiful smile. His laugh is like music and it ripples and spreads to everyone around him.

I used to think he was willful and headstrong. I would get extremely upset when he refused potty training, after trying all the methods in every book. There were so many conflicts, so many fights. I got angry when he refused to walk home one particular route but insisted on taking the long way. My husband would have to wrangle him like a bull to get clothes on him — our little boy crying and screaming as it happened. We called those fights “tantrums” because we didn’t understand meltdowns.

I tried to force him to quit the pacifier, first by bribing him with a new fireman Sam toy, then by making pacifiers “disappear,” then by letting them fade out. That just broke his heart. Calming himself with the pacifier seemed to be the only way he could self-regulate his strong emotions. He would cry when he tried to do without it.

I told the doctor some of this. He looked worried. He said “Your son is obviously unhappy. We need to help him.” He wrote a referral to a specialized clinic with the heading “Autism. Urgent!”

We had mentioned the word a few times. “Maybe he is on the autism spectrum?” But this was different. This was our doctor telling me that my son is unhappy, he may be autistic and he needs help.

I felt relief and panic at the same time. I felt guilty for not addressing it sooner. We had started the first evaluation already when he was 2-and-a-half because he didn’t talk or show interest in playing with other children. He has had speech therapy and a support teacher since he was 3. I just thought he was late with language. His brother was late. We are bilingual. There were many possible explanations, lots of ways to avoid big and “scary” words like autism spectrum disorder.

I have been spending so much time trying to force him to be “normal” — to follow the standard milestones for child development. It never occurred to me to think he was autistic. A month ago I didn’t even really know what that meant.

After leaving the doctor’s office, fear set in. My child may be autistic! I started Googling. I read about the experiences of other parents. Through the panic, some things started falling in place. What they were describing explained so much about my wonderful son, and this is what I want him to know.

You are different. You have always been different. You experience the world in a completely unique way — different from everybody I know.

It was like falling down the rabbit hole and discovering a whole new universe, where up is down, down is up, colors have taste and sounds have texture. A universe where you, my beautiful boy, have lived your entire life — alone. Because we were too busy trying to change you, too busy obsessing about you being more “normal” to notice that you are exactly as you should be. You are perfect. And I don’t want you to be alone anymore.

Originally published: April 18, 2020
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