Three Things a Mom Wants You to Know About ASD
Most of My Frustration Comes From the Outside World
Autism Spectrum Disorder: The Top Three Things a Mom Wants You to Know
When my son Jackie was born, like many new mothers, I had no idea what I was doing. I can remember in the hospital, after an excruciating delivery, asking the nurses repeatedly for diaper changing lessons, even in the face of eye rolls. Being a new parent can be scary—especially when, in your gut, you feel like something just isn’t right. Here’s what I’ve learned.
1. Trust your gut.
Jackie was slow to develop language. He began to reject new foods and would have a major freak out at parades and restaurants. After consulting his pediatrician, he received the diagnosis of sensory integration disorder. We began feeding therapy and bought noise reduction headgear and it helped a little, but in my gut, I felt like there was more to it. After a difficult adjustment to summer camp and a few more red flags, Jackie was diagnosed with autism spectrum disorder. As he entered second grade, he began having problems making friends, missed most social cues and had fits of anger that came from seeming nowhere. With our diagnosis of ASD we could receive in school therapies as well as support.
2. Don’t judge.
High functioning ASD kids can appear to be typical. On the outside, they can fit in at times. On the inside, they do not. They have the same issues that typical kids have, making friends, fitting in and dealing with school but they do this living in a world that is not their own. They don’t understand the rules of the typical world and can be completely reactive to issues that they are confronted with. It can be easy for someone that is not directly involved in an ASD child’s life to make judgements and assumptions but the reality is that what you see is not always what you get with them.
When Jackie was young, he loved spending time at the park. I think it was the freedom of the open air and space to run around and be himself. On one sunny day, when Jackie was around six or seven years old, the park was packed. I was happy to see other children playing, attempting to engage him. And then out of nowhere a fire truck came raging down the street followed by an ambulance. We all quickly covered our ears with our hands but for Jackie it was too much. Even as the emergency vehicles passed and the noise dissipated, Jackie’s internal calming mechanism had been disrupted. He ran like a child out of control, stomping through the sandbox, ruining the mounds of castles put there with care. He ran up the slide, knocked into other children, causing them to fall with a scattering of whimpers. I rocketed towards him but not before I noticed the other parents staring, shaking their heads at me and at Jackie. I knew what they were thinking; an undisciplined child, a spoiled child, a child with no regard for playground etiquette. This day stays in my memory because it was the first time that I really felt judged, judged as a parent.
3. Don’t assume that you understand an ASD child’s behavior.
The thing is, with ASD kids, there’s always more under the surface. Friends and even family members cannot always see the internal struggle. I can remember many times consoling Jackie after he would come home crying about a friend lost. I would contact the other mother only to have her tell me that kids would be kids and that they would get over it. She didn’t see my son, unable to sleep, refusing to go back to school, certain that he would remain friendless his entire life. As Jackie got older, he would launch into fits of self-loathing over seemingly nothing. The baggage of a hard day at school would be unloaded in my face and I was left to decipher what was really going on with him. If my son is looking at you when you’re talking, it doesn't necessarily mean that he’s listening. If he’s in your personal space, it’s not because he’s trying to creep you out. If he repeats the same sentence over and over until you feel like you just can’t listen anymore, it’s not because he’s trying to annoy you. And if he angry about something, it usually goes deeper than you think.
The truth is that ASD is real, it’s not going anywhere. According to the Center for Disease Control, 1:68 children are diagnosed with ASD each year. Educating yourself is key when dealing with ASD children. Parent with love and understanding and let the label of ASD be something of pride and celebration. Above everything else, find joy in the good moments, and try not to stress too much in the difficult ones.