The Lonlieness of the Autism Parent
I find it very difficult to be honest with myself about my feelings. There is always that inner voice telling you that you’re bad or wrong for thinking a certain way, or that others will judge you and you should keep it to yourself.
After a while these feelings become overwhelming and a sense of isolation grows. Since I became ill in 2005 I have lost friends. Those who you believe whole heartedly are your best friends soon disappear when life renders you not so much fun anymore. Then after marriage and childbirth, more friends seemed to disappear.
My son’s strange behaviour made it difficult to meet new people and playdates are a distant world. As Moo’s tolerance of the world and others lessened so did our interaction with our old friends. We no longer were invited to occasions, well only round robin emails to invite us to exhibitions and other show off things. Noone ever phoned up just for a chat, not even friends I had been there for in so many ways in the past, could bother to call to see how we were.
After a while you become disillusioned with friendship and seeking out new ones becomes pointless. Noone understands why your son is shouting “Fucking…..” repetitively, or hitting you and others for no reason despite constant chastisement and that telling off just seems to exacerbate the situation. People look at you strangely when your son decides that he doesn’t like the way another child is looking at him (when most of the time they aren’t looking at him at all) and then runs off to kill them and your husband has to chase after him to pull him back and apologise.
To others it seems as if you are just a bad parent and your pleas of “he’s autistic, I’m so sorry, he can’t help it” looks just like excuses for bad parenting. You find yourself even questioning whether he is autistic, or are you just awful parents. This isn’t helped by family members saying “he’s good for me” when they only take him out alone a couple of times a year and they’ve already forgotten that meal when he was on form and they remarked “Oh my God, I’m so sorry, is this what it’s like for you, I had no idea, I will make sure [insert name] knows…… Oh I feel so bad for you…..”
When you get five minutes peace and you think back to your old life, sometimes a small part of you misses it, though you would never wish your meltdown monster wasn’t around. But sometimes you just wish you could go out. Of course the fact I got ill and am now stuck in a wheelchair and unable to go out and about by myself (even more so since my wheelchair induced head and neck injury) worsens this sense of loss. The worst thing is the guilt you feel for even feeling that way, even just for a second.
My husband and I were talking the other day when we were out with just our youngest and we found ourselves commenting that it was just so much simpler when it was just her. As we talked we discussed how she was just easier and we could breathe when he was not there. But the worst thing about autism in the family is that you know they can’t help it and you immediately feel guilty for feeling that way. What followed was ten minutes of each of us justifying to the other why we felt that way and apologising to one another for feeling that way and then the guilt and the retractions.
And therein lies the loneliness of the autism parent. Noone truly understands and you worry how others will perceive you, even your nearest and dearest and so you keep quiet and go back to feeling guilty in silence.