What’s it like being the non-autistic parent of autistic children? by Deanne Shoyer
When I was asked to write a piece about autism for The iMums, given that I’m not autistic I decided to share with you the only thing I am an expert on – what it’s like to parent my children.
A couple of points to note first. Autism is a developmental disability and as a non-disabled person, the challenges I tackle from time to time are nowhere near as significant as the hurdles my children face daily. Secondly, I have never once wished my children were not autistic; I adore and accept them exactly the way they are.
Bearing those caveats in mind, here are some of the things I’ve found hardest to manage:
- The administration. In order to get the accommodations, services and supports my kids need, I have had to fill in more forms, attend more meetings, appointments and workshops, do more research and learn more things than I ever imagined possible.
- The isolation. There’s a counterpoint to this so make sure you read on, but I do sometimes wish I had someone I could call and have a cup of tea with. There are parent support groups but even if I didn’t have to do a 3 hour round trip to attend one, I still wouldn’t want to sit and listen to people talking about how much autism sucks. Friends whose kids are typically developing seem to fall into two camps. First there’s the pity crowd who are “so sorry” about my boys’ diagnosis. I’m not sorry, my kids are awesome. Then there are the folks who breezily declare, “well all parents have to deal with that.” Yes, given that my children are people and not dolphins, obviously there are many things that we have in common but honestly, it’s not the same.
- Fear for their future. All parents know this feeling but autistic adults (even when compared to other disabled individuals) are much more likely to be unemployed or underemployed than their non-autistic peers. I worry about my boys growing up in a society that focuses solely on their deficits and differences. I want them to live in a world that values diversity and sees their strengths.
- When I don’t understand my kids. My non-speaking son is incredibly adept at communicating what he wants and this continues to improve as he uses AAC (augmentative and alternative communication). My other son, Oliver, is verbal but highly echolalic. I know that behaviour is communication but sometimes I struggle mightily to understand what Oliver’s behaviour means. Not having the same neurology as my children can be frustrating and painful at times.
- My boys are autistic in very different ways so when their needs come into conflict – when Oliver’s sensory seeking behaviour triggers Owen’s sensory sensitivities, for example – it’s extremely hard to come up with solutions where everyone’s needs get met.
Having said all that, there are some terrific benefits that I would never have experienced if my children weren’t autistic. Here’s some of them:
- An online support network. I have so many friends who, even if they can’t be with me in person, are incredibly understanding and supportive. I especially value the input of autistic adults who can often interpret my children for me in ways that make it easier for me to understand them.
- I’m a better person and I’m pretty sure, a better parent than I otherwise would have been. Trying to understand my children and balance their competing needs does have an upside. I’ve read books and articles, met people, written things, had to get my head around concepts and generally followed a path I would not otherwise have taken. I’ve had to exercise my powers of deduction and imagination – both in understanding my kids and coming up with creative solutions for some of the issues they face. There’s nothing more satisfying than making your child’s life easier, better or happier.
- It’s much easier to raise my children to be themselves. My kids get to focus on things they enjoy. They are allowed to leverage their special interests and areas of strength in order to develop new skills. Their education is individualized to suit them, they don’t have the same pressure to conform and they aren’t forced to wear the straitjacket of a standardized education.
- In many ways my boys are so easy to parent. They enjoy their own company so I’m not forced to feel that I always should be with, play with or talk with them. Their lives are relaxed and not over-scheduled with play groups, school clubs or ludicrous amounts of homework. They have freedom to just ‘be’ which in turn makes being a solo parent much less stressful for me.
I clearly can’t claim that this is what life’s like for all parents of all autistic children but I hope I’ve given you an idea of what it’s like for me – and that I wouldn’t have it any other way.