I'm still learning about autism on a daily basis, even though it has been close to 18 years that we've been living, learning, growing and thriving with autism.
Every autistic person's story is different. Every family's situation living with autism is also different. While there may be some similarities in our stories and some issues that resonate with us, there will be an equal amount, if not more, that are very different and far removed from what our own reality with autism is. This doesn't make any one of our stories less significant or less important.
There is one issue that causes me some concern and truth be told, one that I struggle with (but have been coming to terms with) and that is my sons need for solitude. The need for solitude, for silence, is in my opinion, an important dialogue, one that isn't spoken of too often but essential in our conversation when we talk about autism and raising awareness.
I wrote the following post on my Facebook page a few weeks ago:
"I still have a lot to learn about autism. My son is content alone at home not wanting or needing a friend to play with. This is a concern for me because I feel like he should have a friend to play with. He has lots of friends at school, but what happens at school stays at school. These two worlds cannot cross over. Regardless how I feel, I must always remember that he is happy."
I received many wonderful responses from parents relating to the same situation with their children and I also received responses from autistic people who said how important solitude is for them. One in particular noted how great it was for my son to be able to do this in the comfort of his own home and not have to hide in order to 'stim' -- engage in self-stimulatory behaviour -- to be in his quiet time, his serenity, his calm and his world.
Now that the kids are out of school, we're spending a lot of time in our pool but again, Emilio will ask me many times to leave so that he can be alone. I always respect his wishes so I do leave him alone and I watch him from inside. I'll go out periodically and ask him if he wants some company and he'll respond with "um, no I'm okay, you can go now" or "Yes, you can come back now".
I've come to understand and realize how this time is so crucial to him. It's his anchor that keeps him grounded when he feels off balance. It's self-regulation. Some days he doesn't need it at all and then there are other days where he seeks his solitude continuously.
When is too much solitude too much? I don't know, really. I still try to interrupt him at times when I believe that he's been alone for too long. It breaks my heart to see him alone so I try coaxing him to play with me. He'll sometimes get upset and ask me to not interrupt him when he's talking to himself. Other times he willing comes and engages with me in a game or watch a movie.
I would think this need will be with my son forever. Maybe it will subside over the years, maybe not, but my greatest resource is listening to autistic people that tell me how as adults they still seek their quiet time, their solitude. Who is to say that this is wrong? I can't.
As a child many people criticized my son's behaviour as well as my parenting skills because I allowed him to stim quietly in his corner. People would be with us for a short period of time and they would assume that he stimmed all day long and that I allowed him to stim all day, without interruption or redirection towards something else more stimulating and appropriate. Of course that wasn't the case but that's what people thought of us.
The assumptions of others have always been and continue to be to this day, our worst enemy, especially for my son. Assumptions are always the prelude to judgments; judgments that are always made without knowing his story, his achievements and more importantly, his thoughts.
I shall leave you with one of my favourite quotes:
"Let's stop 'tolerating' or 'accepting' difference, as if we're so much better for not being different in the first place. Instead, let's celebrate difference, because in this world it takes a lot of guts to be different. -- Kate Bornstein
ALSO ON HUFFPOST: