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Autism “Warriors” – Why are we fighting each other?

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It was almost 3 years ago. I walked in to a lab for some blood work for myself. It was late afternoon, and the tiny 15×15 waiting room was packed. Twelve chairs lined the walls and all but one was taken. I checked in and took my spot against the wall, pulling out my cell phone to pass away the time until it was my turn. Over the edge of my screen there was a mom with her son sitting in the corner. He was probably 11 or 12 and he was crouching on the edge of his chair, tapping his mom on the arm, face, or leg, and grunting intermittently. She glanced around nervously when he got a little louder, and tried to calm him. She was uncomfortable, but not as much as he was. She met my eyes and looked an apology at me, “I can’t help it. I can’t control him. I’m so sorry he’s disrupting your afternoon.” I smiled at her.. not in a condescending way (I hope), but in a I-understand-he’s-not-bothering-me-at-all way. I was only a few weeks in to our autism journey. I had not read all the books yet. I was still quite lost, but I recognized it in the other child. I wasn’t at all bothered or upset when the boy laid down on the middle of the waiting room floor. I even glared at the other people who rolled their eyes or sent accusing looks at the frazzled mother. They couldn’t understand that this was better than screaming; better than a full meltdown in the middle of a small room. How could they know that to this child the room felt like a tiny box, full of scary strangers, that the flourescent lights were probably hurting him, or that the door screeching as it opened was like needles to his ears?

I went out to use the restroom, and when I came back there had been a shift in the seating. There was one seat left beside the boy. I didn’t have any problem taking it, but he did. He started patting me on the back while looking down at my feet. Clearly he was asking me to move. I stood up again and his mom immediately told me how sorry she was, to please take her seat, she would make him behave. I touched her on the arm and told her, “It’s ok. I don’t mind. I know how he feels. It’s a small thing for me to stand if it makes him comfortable.” I didn’t ask her if she had him on a special diet, or what biomedical treatments she was following, or how many hours of therapy he had a week. I didn’t ask if he was fully vaccinated, or unvaccinated, or if he had an iPad to help him communicate. I didn’t ask what caused his autism, or if she thinks there is a cure. There was no judgement. We get enough judging from the rest of the world.. do we really need it from the people who are supposed to be in the trenches with us?

Get someone on Instagram or Facebook, and suddenly that is exactly what happens. Bickering, trolling and judging. MY WAY IS BETTER! YOU ARE DOING IT WRONG! YOU DON’T LOVE YOUR CHILD ENOUGH! When we can’t see the other person face-to-face we can’t imagine the beating they take from our “well-meaning” words. They might be at the end of their rope and just trying to get through the day. How is a nasty, judgmental comment going to help?

No matter what “side” of the cure/therapy/treatment debate you are on, we all have a common goal (even the parents of non-autistic kids). We want our kids to be healthy and happy. Some of us might want a spontaneous hug that isn’t part of the bedtime routine. Some may want real eye contact. Or a full sentence. Or an I love you. Those are the things autism parents crave.. the things that other parents take for granted. I find myself complaining sometimes when Cullen won’t stop talking, but I remind myself that there are lots of moms that would give anything for one word!! Or the nights when I watch him stretch, wiggle, roll, contort and flap across the floor while we’re watching tv. Sure, it’s distracting, it can be comical, it can be irritating, but he’s calm and he isn’t hurting himself. He could be violent. He could be hitting or biting himself, or banging his head on the floor or the wall.

As parents, we are all finding our way down the road we have to follow. We are doing the best we can, and we are doing what works for our child. What works for mine, may not work for yours. It might be something worth trying… I’m always looking for new techniques and new therapies. But I hate being told that if I don’t believe in a cure, that I’m not doing all that I can for our son. His brain is wired differently, there is nothing I can do about that. I can help him be comfortable in social situations. I can teach him (a hundred times if needed) how to behave appropriately. I can feed him the best possible food to make all of that easier. I think he can get better. I know he can be independent. I know he’s going to be an awesome adult. And I know that he’s going to be happy. I love that he speaks his mind.. I just want him to do so respectfully. At the end of the day I don’t care if he makes a puppy dog face with his tongue hanging out when he’s excited, or if he goes up the stairs every night on all fours, or if he slithers on the tile like a snake. It’s not about being normal.

We are all warriors. We are all fighting for our kids. Let’s not fight each other too. Work hard and be nice to people.

February 24, 2014 - 11:40 am

Lisa - I can attest to the fact that Aspie kids do grow up to be awesome adults that can fully function in the world—and that their unique perspective can coax those in their sphere to grow and open up in remarkable ways. My husband has Aspergers, ADHD and is bipolar, and his journey has been rough. He wasn’t even diagnosed until he was in his 30s, but his challenges have fostered amazing determination without destroying his creativity or beautiful spirit. There is no one right way to deal with the condition. Find the way that works for you as an individual/couple/family, and keep evolving it as you learn new things. Try on different styles to see what fits, and don’t judge those who differ. Nothing is static in this way of life.

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