How I Learned to Always Trust My Instincts When It Comes to My Child

When the school psychologist kindly explained that my three year old daughter rated mild to moderate on the autism scale, I wasn’t even surprised. I went into my daughter’s evaluations pretty much knowing that something was going on with her. Still, I would be lying if I said I didn’t have a moment where I felt a bit weepy, even though I expected this diagnosis. In that moment, I mourned a loss of something that I never had to begin with– a made up version of childhood perfectionism. Then we brushed ourselves off, and life was exactly the same as it was before the word autism was even uttered by her.

unnamed-1 The truth is that I always knew that there was something a little different about my daughter. The first time I saw her, she was sticking her tongue out at the world. On the first day of her life, her grandfather stopped what he was doing, looked up at the ceiling, and asked her, “ What are you looking at?” In case you’re wondering, she was looking at the fluorescent lights on the ceiling.

Sleep was something she simply couldn’t master. She had almost no capacity to self regulate. She was the most serious infant I’d ever seen in my life. She didn’t smile until she was over 6 months old. She never crawled, walked early, and pretty much immediately afterward would spend hours jumping up and down while flapping her arms. She lined things up all over the house, on any open space she could find. She ignored people– she had no use for them at all. She would run away from us if we didn’t hold her hand. If you foolishly released her hand, she’d run as far away and as quickly as she could.

You would think that since I immediately recognized these behaviors, that diagnosis was both immediate and easy. It wasn’t at all. The problem was other people, who I’m sure had good intentions, worked very hard at making me doubt myself. Ranging from poo-pooing her behavior, to down right anger and hostility. I had numerous people telling me that these things were normal. These were people in my personal life, with some of them actually being healthcare professionals. Bitter arguments would ensue where I would explain that every time I plugged in something online about my child, that Dr. Google’s first entry was autism. Each time. Every time.

It was the same even with people who were not a part of my personal life. Her pediatrician, who I still like a great deal, didn’t catch it. When I brought up her very poor sleeping habits, I was told that she was “on the extreme side of normal.” When I brought up her constant running and jumping up and down, I was told that she probably had ADHD, but that there was nothing that could be done for her at such a young age.

The truth was that she hit her developmental milestones. Could she say two or three word sentences? Absolutely. It just wasn’t productive language. She would just repeat the same sentences over and over again. She couldn’t even answer a yes or no question. Could she make eye contact? Sure, she could make eye contact. It was just fleeting, intermittent eye contact. Sometimes, someone would be talking to her, and she wouldn’t even turn her head to look at them. But yes, she could make eye contact if she wanted.

This ladies and gentlemen, is how a child “falls through the cracks.” This is how children who can “pass” don’t get the services they need. Autism is almost like a dirty word to many, and people have a preconceived notion of how someone with autism should act. In asking people if they could tell something was “off” with my child, the response would commonly be yes, followed by an immediate: “But I don’t think it’s autism.”

I don’t fault people for that response. It’s what society has conditioned us to think. For all I know, if it hadn’t been my child, maybe my response would have been the same.

If I had it to do all over again, I’d trust myself a little bit more. I would have pushed a little harder. I wouldn’t have allowed doubt to creep into what I obviously saw with my own eyes. I’m fortunate because even though there was a slight delay, my child will be getting services at the end of the month. She is 3-years-old. Still fairly early, but I could have got her in at least a year ago if I had just stopped arguing, and just started doing.

Parents, always trust your instincts. No one knows your baby better than you.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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

I Don’t Know Whether My Son Has Autism or Not, But These Are the Things I Do Know About Him

I see a lot of stories on here about autism spectrum disorder. I get it, I do. I know that if you have a child who is diagnosed you want to share their triumphs and tears and it helps to know you’re not alone. But I have a feeling I am alone. So many people [...]

A Note to My Past Self: There Will Be Good Days

If I could go back to my son’s diagnosis, the first one when I was 20 weeks pregnant with him, I would tell myself, “Yes, Xavier will have Hydrocephalus (excess water in his brain), but this will not be all of him. You will have bad days, horrible days, days when you have to trust [...]

I Used to Hate the Beach. Then, My Daughter Came Along and Changed Everything.

I used to hate the beach. I loathed the bright, hot sun that makes my eyes malfunction and my pale skin burn brighter than the reddest lobster after three minutes of exposure. I couldn’t stand the smell of the sea, a smell that can only be described as ten-day-old seaweed covered in iodine and set [...]

Why I Didn’t Cry When My Daughter Was Diagnosed With Autism

I remember the details pretty vividly of when the therapist told my husband and me that our daughter was on the spectrum. It was morning. The office was dark. The couch was uncomfortable in that it was too deep to sit back on and still have my feet on the floor. The therapist held a [...]