The other day my son, Jacob, decided he wanted to hang out without his headphones on in public. This was new for us. Jacob has autism and has extreme sensitivity to sound. I thought to myself that it was great that he was trying to cope with the sounds. But after a few minutes he started moaning and making his usual loud noises and hand gestures and people started staring at him. It made me a little sad and self-conscious for him and I realized that his headphones often indicate to people that he has autism or that he is "different". Different is absolutely OK and people are usually understanding when they realize that. But I started thinking about when he is a teen and making noises and flapping...what if he is totally done with his headphones by then? When people don't know he has a disability, they often just stare at him like he is an alien. It's such a shame.
I was recently in a situation where I got to see some typical boys and girls interact with a boy who has obvious signs of high functioning autism. I saw the way they ignored him, the way he was left out of the group, and the way they laughed at his unusual manner. It absolutely broke my heart.
This can't be as good as it gets. I wonder how we, as parents, can help this situation? Will it always be so awful and lonely for kids with these invisible disabilities? Surely we can do better.
I think the situation just stressed to me the importance of embracing who God created our children to be. If our kids have autism or any other invisible disability, it can be tempting to hide it. For a while that works well, right? You teach them to cope, to hide, to act "normal". But after a while, people discover that they are different. How do we then go on and tell them their differences are ok after making them hide it for so long? I am not saying to stop encouraging and teaching them to be appropriate, courteous, and kind, but the fact is....autism is a social disability. It affects the way individuals engage with people. We need to teach our kids that their differences make them unique and they can embrace those differences and be proud of them. How can their strengths be used instead of focusing on deficits?
Also, it's important for us to not back away from being open about disabilities. Sometimes in our community, kids who presume our children are typical (just acting odd) can be flat out mean. I don't always blame them. Picture a kid with high functioning autism following a classmate around very close and talking to them about their hair over and over (true story). That behavior would naturally make a peer scared or uncomfortable. However, if that peer knew that they had autism maybe they would have compassion and be more understanding. Maybe communicating more could help to make the giant social gap a little smaller.
I am so happy to see so many people and organizations embracing autism awareness. I love the Sesame Street character who has autism. In the show, she announced that she loves when people know that she has autism. I am so happy that they are encouraging children to not only disclose their diagnosis with others, but to be happy to share it. Autism is just a small part of who are...but they are so much more than a diagnosis.
I know as Jacob grows, if he becomes high functioning, it will be tempting to pretend things are "normal", especially around peers. But I am hoping that we can help Jacob to see that having autism is not only OK, it is AU-SOME. More importantly, it doesn't define him. There is so much more to Jacob than autism. He is silly, smart, the master problem solver, and such an amazing kid. I hope he can embrace all those things and never feel like he has something to hide. I also hope and pray that parents of typical kids teach their children to be kind to kids that act unusual or different. If you aren't having those conversations, your kids will not automatically know how to treat them...especially if their disability is invisible. Like any special needs parent, my prayer is for my child to be treated with kindness and respect, just like any other person.