Embracing Autism

I read something a friend posted about autism, about the journey of an autism parent. It got me thinking, reflecting.

Being a parent is the single most important (and demanding) job you will ever have. It is a tough job. Period. But when that job is compounded by having a child with special needs, it can be overwhelming. As this particular post pointed out, you are your child’s voice, their advocate, their therapist. You are also their playmate, their teacher, their guide. They depend on you to help them make sense of a world that is utterly foreign to them.

The journey can be tough. When you see your child, you see all the amazing things he or she is: the happy smiles, the infectious giggle. You see the determination, the struggle to perform even the simplest of tasks. You see their fear and uncertainty when they face a new situation. You see them overcome their hurdles. You see all their assets, and their challenges.

Too often, other people see only the deficits. Your child is four years old: why is she still eating baby food? Why are they still in diapers? Can you please make them stop that noise? Why is he spinning / flapping / rocking? Can’t you control your own child? I’ve heard all of these, and too many more to count. In the beginning, I was very apologetic. Sincerely apologetic. I certainly didn’t set out to inconvenience anyone, or to “ruin” their day. I simply wanted my son to enjoy the park. Or to pick up some groceries.

I’m not sure when or how it happened, but I finally reached a turning point. I had the dawning realization that this journey is ours. My son is the one who struggles constantly, trying to filter and process the relentless onslaught of stimuli: scents, sounds, light, darkness, tastes, textures, heat, cold. It is draining for him, physically and mentally. It can become overwhelming. And when you don’t have the skills to tune it out, to process everything, you simply react. Whether that means he covers his ears and hums to block out excess sound, or flaps and rocks to settle his nervous system, or screams because someone’s perfume is assaulting his senses, it’s his way of coping. I finally took a step back, looked at the world from his point of view. I took a good long look at what he has to overcome, simply to be in this hustle and bustle world we live in. It was humbling. It was inspiring. It was heartbreaking.

That was the time when I said to myself No more. I will not let the ignorant judgment of others who do not understand impact the way I raise my son. I will not let him suffer the cruel criticisms we so often encounter. I will help him navigate this confusing world. I will try to see things as he sees them. I will embrace his innocence, his determination. I will draw strength from his perseverance. If he isn’t going to give up, neither am I.

It was very liberating. Without the guilt of inconveniencing other people, without the stress of making sure that my son conforms to societal norms, without caring what other people think of him, or of my skills and abilities as his parent, I was suddenly free to enjoy him just as he is. I became a better advocate, a stronger, louder voice for him. I was able to connect with him on a much deeper level. I could rally for him, encourage him, nurture him. And celebrate in every accomplishment, every milestone, every victory. From trying a new food to using new words. From putting his shoes on the right feet to blowing his own nose. From spending more time in the classroom to going to camp for three days. Big or small, I take such pride in the fact that he never gives up, that he keeps trying until he masters something.

He has taught me so many things over the years, and I am a much better person for it. He has given me the courage and the strength to stand up for him, for myself. His giggle, his grin, cheer me up when I’m feeling down. I am envious of the way he carries himself through life: he does not care what other people think of him. He does what he wants to do, and takes great pleasure in doing so. If he, at the age of 17, wants to watch Sesame Street and Teletubbies, I’m okay with that. If he wants to buy a pink purse at a yard sale while wearing a blue flowered bonnet, he will. And I will stand beside him and smile at the world.