For some reason, this weekend I have been feeling the isolation that comes with having an autistic child more intensely than usual. Most of the time, I am okay with being a bit isolated. I am a bit of a loner, although I have wonderful friends I very much enjoy spending time with, but I enjoy my time alone, too. I can usually be happy for days if I have enough books to read or some good TV to watch or a game to play. But lately, I have been thinking about how hard it is to connect with others with the restraints that autism puts on a family. The kind of interaction that come naturally to most people and families doesn't for us, and I am feeling it more lately.
There's a lot of ways autism isolates. I'd say the main one is obvious---just how hard it is to take Janey or other autistic kids any place. We can't take off for a weekend to visit people, we can't get together casually with other families, we can't decide to go out to eat or to a museum or event or even shopping, without figuring out first how Janey will do, if she will tolerate however long it takes to get there, if she will freak out when she gets there, who will be responsible for keeping an eye on her at all, all times, who will hold her hand, what we will do if we need to leave---all that. Most of the time, we don't even consider such expeditions. They just are out of the realm of our lives. We necessarily center our lives around our house, which is fine, most of the time, but it certainly gets closed in feeling now and then.
Also, when you have young kids, the main way you meet friends is through your children. Your kids go to a friend's house, you take them there or pick them up and talk to the parents, and sometimes, you become friends. You take your child to the playground, to lessons, to sports, to activities, and you meet people. With Janey, that doesn't happen. She doesn't get invited to people's houses. We can't casually go to the playground. The activities she can do often cost a great deal of money, which we can't afford. We take her to school and bring her home. That is what she does.
Autism also puts a strain on old friendships. It takes a special kind of friend to understand how autism has changed my life, why I can't be the friend I used to be. I forget birthdays, I am not there to listen, I can't get together without planning. I am lucky to have friends that have adapted, but I can't spend the time with them I wish to.
As for couples events, that just doesn't happen. Tony often gets together with friends from high school. I have never met most of these people, although they sound great. If Tony is going out at night, I must stay home with Janey, unless the boys can watch her. During the school year, that is mostly impossible. They have tons of homework, or their own activities. If we are going to be out at all late, we don't feel right leaving Janey home with them either. So I stay with Janey.
There's also just the exhaustion autism brings. During the day, when Janey is at school, I either work at home, do housework or nap. I don't use the time for socializing much, or nothing gets done. It's very hard to do laundry or on-line work or catch up on night sleep I don't get while Janey is home.
I am very thankful for social media, but I do have to admit it doesn't replace actual getting together with friends. Last night, I felt frustrated and alone and needing to talk to someone. That's not the kind of thing I'm going to post on Facebook, or email people about. I could have called a friend, but it was late. That would be the case with or without Janey, of course, but I had reached that point due to the isolation that is there all the time. I felt alone, I think, due to the restrictions on my life that keep me from being able to connect in person with people much.
So do I have a solution or point here? Not really. It's just the way it is. To have friends, you need to be a friend. We tell that to kids, and that's the problem. I don't think I am able to be the friend I want to be to people any more, and that is maybe one of the hardest parts of this autism gig.