A friend of mine recently suggested that I identify and write about the three biggest areas of concern for parents of autistic children. I quickly determined my three, and they are probably universal.
Our children’s safety is a huge life-long concern. We worry because they can have extreme responses to sensory issues, like darting into the street because a bug flew in their face or screaming and writhing on the floor in a public restroom because someone started the air hand-dryer. Our children are also vulnerable to being coerced into doing things that are dangerous or illegal because they are trusting and many of them want to have friends. We worry that they might be abused at some point in their lives, and worse, not be able to tell us. Some of our children have seizures, which can be deadly. We worry if our child leaves the house when unsupervised; some are runners who like to “escape.” We worry about our children injuring themselves or others when they lash out due to frustration or fear. We worry about how people out in the community will respond to them. Safety is definitely a primary concern, and parents must be vigilant.
We parents are equally concerned about our autistic children’s ongoing education. We want to make sure that they are in cognitive-appropriate programs and that they have access to the various types of therapy that they need so that they can progress to their optimal level of development and functioning. If our children are mainstreamed, we constantly have to check in to make sure that their needs are being met, that they are not being bullied, and that they aren’t just being sent to the library to watch videos. Our children’s academic and social development greatly affects their potential, and we always want them to be happy, learning, and valued. This involves a great deal of parent advocacy.
It may only be an occasional thought for parents of younger autistic children (mostly because we were too busy trying to deal with the present), but once our children hit adolescence, it becomes a major concern. What does the future hold for my child? How will he be in adulthood? What happens when I’m not around to care for him? These are all questions that entered my mind upon Nigel’s initial diagnosis, and infrequently in the ensuing years. About a year or so ago I started to really wonder about his future, to think about it on a regular basis. I have concerns about how independent he will be, how he will navigate the community without my intervention, how he will interact with people. Most importantly, I want him to feel fulfilled with his life, to have a job that he enjoys and people around him who appreciate him. I want him to be happy. Of course, that is what all parents want for their children. But with autism in the picture, parents so often have to orchestrate the outcome, since in many cases we are heavily involved for the rest of our lives. Our concerns about our child’s future become our champion cause.