Do you know that awkward feeling you get when someone is making an assumption about you or your life? Imagine how I feel when it relates to my son. As a rule I do not let folks know that Johnny is Autistic when he meets new people. I am not embarrassed or ashamed but rather I want him to be seen for who he is and not through the stereotype that a person is viewing him through when they know he is “Autistic.” I want Johnny to have the freedom to be “just Johnny.” I let new friends know once I think it is naturally a time for it to be mentioned. When I have to change our schedule because of therapy appointments or I offer some knowledge regarding children because I’ve been to countless hours of parent training and OT then when I’m met with quizzacle looks then I offer why I know this. Its like when you are three months pregnant but you are not letting people know yet and someone keeps trying to get you to have a glass of wine. I don’t start rambling along about why I think my eye sight is starting to go until someone hands me something to read and I can’t for the life of me make heads or tails of it. I want Johnny to just be a boy and not let Autism define him or box him in. It is part of him and always will be but its not the only thing.
It inevitably happens that once I explain that Johnny is Autistic that everything changes. Some friends are more understanding and are full of concern and questions. Other friends suddenly feel sorry for me and then I hear the pity in their voices. Have you met my son? Pity is the last word I would use when I think of Johnny. Determined, joyful amd unstoppable are some of the words that come to mind. Frustrated as well since I cannot imagine how life must feel for him navigating a sensory mine field every day especially when he was non-verbal and couldn’t relate how he was feeling. But his Daddy and I never pitied him or felt sorry for him. I think it is only natural that we didn’t want our child to have to struggle more then most. We never want to hear a professional who works with Johnny ever feel that way because they will never be able to help him then. It is a dangerous road where pity and feeling sorry leads to not presuming confidence in the person’s abilities because you are on the path of making assumptions about the person. Is life harder for Johnny? You bet. He is in Grade 1 with all the other children learning the curriculum but at the same time he is learning how to speak clearer, advocate for himself, have peer to peer interactions because lets face it its easier talking to adults and handling all the tiring sensory stimuli coming in all day long. We know he can do anything he wants to it will just take a bit longer for him to get there.
One of things I enjoy about him is that he is very secure in who he is and what he likes and will make sure everyone knows that. He will not “just do” what everyone wants him to do if he doesn’t feel comfortable and bow to social pressures. I hope he hangs on to this as he gets older and I like to think its a benefit of Autism. What I want to teach him is “why” his peers will bow to social pressure and why sometimes we do things just to please someone even though we might not want to do it.
I guess its a normal reaction to feel concern for your friends and especially if you don’t have any personal experience with Autism and are relying on stereotypes. How can someone really understand our life if they are not walking in our shoes? Autism is a spectrum disorder which literally means that its like trying to say “I need blue paint please” while standing in front of the paint chip section in a paint store. Johnny is a part of a kaleidoscope that changes as he moves through the day. Are there nights where we are working on more school stuff trying to advocate for more services for our son that we look at each other and say “this sucks.” Yup. Are there nights where we are in another workshop or parent training group when we could be on a date that again we are pouting. Yup. But as parents you do what you have to do and you don’t have room for anyone feeling sorry of you. Johnny’s Daddy and I try to be pretty open and transparent with everyone and we hope that by doing so we lead to more understanding.
A good friend of mine likes to tell me that God only gives you what you can handle I think that applies to everyone. You do what you have to do and the same goes for the child that is facing developmental challenges. They do what they have to do so that they can live a full life. All they need is everyone around them to not hold them back with pity and stop worrying about “overloading them” and just give them what they need which is unconditional support.
So take a look a good look and as you read my blog about Johnny and remember….different is not less.