Requested by DirtyNakedandHappy
Children begin by loving their parents. After a time they judge them. Rarely, if ever, do they forgive them. – Oscar Wilde
What’s that thing they say? “Judge not, lest you yourself be judged…” Y’know what? Bring it on!
There are some major problems with how some (notice I say some #notallparents) parents of autistic children behave, both online and offline. As an autistic person who spends time with an autistic partner and sometimes an autistic child, I’ll come out and say autism is no walk in the park. I’m not here to whitewash and make everything look rosy.
So what’s tough about having autism in your life? Well, if you’re a parent of an autistic kid, or a carer of an autistic adult, chances are life is tough because of how much there is to do. Haircuts might be a nightmare, or brushing teeth, or ensuring that the person you care for gets a nutritious diet. You probably have to try to diffuse situations where the autistic person in your life behaves in ways that society doesn’t tolerate.
After dealing with all that, all you really want to do at the end of the day is vent. We get that. You’ve had a tough day and you want to feel supported; you don’t want to feel alone.
The problem is, there’s another perspective in all this. The person you care for is almost certainly also exhausted, frustrated, upset. For those of us who have access to the internet and have our communication needs supported so that we can write about our experiences, we have the option to choose whether to put all that frustration out here, which bits of it are appropriate for sharing, and which bits will result in an unhelpful backlash.
This person may one day learn to read, pursue a career, make friends and have a social life where their social circle use the internet. Nearly all parents want that for their child. To have access to the educational, social and working world is the thing a lot of parents of disabled children dream of. What not everyone realises is that in the age of the internet, information written about them when they’re 5, or 10, or 15 will still be around when they’re in their 30s, 40s… as far as we know forever. Nothing ever really goes away once it’s on the internet.
So one thing we’ve got to worry about is whether what we’re writing has the potential to negatively impact our children’s chances of success in the future, should a future friend or acquaintance happen upon it.
What about our children’s feelings? My mother wrote a baby diary for me, including occasional bits that might be embarrassing. The usual things about bad behaviour, potty training, misunderstandings and mistakes. The things that every kid goes through. I don’t mind, because that baby diary is on paper, between two covers, and I have control over it. I could destroy it, and it would exist nowhere but in my memory and my mother’s. The internet doesn’t work like that, though. I’d be pretty upset if I came across my baby diary on the internet. I mean changing my name and disowning my family levels of upset. Nobody wants that for my child, right?
Of course, as parents of autistic children keep reminding me, not everyone grows up to be able to read or write. There’s a chance that your kids may never be in a position to read what you write about them. There is, however, one additional consideration. That’s how the public, society as a whole, is influenced by what you say about your child.
While you may feel like you’re telling it how it is, and giving an honest representation of life as a parent of an autistic child, what you say can be very damaging. A great many of the problems both autistic people and their carers face are the result of a lack of understanding. Just look at the parent blogs out there and you can guarantee nearly all of them will have one post in common: the People Staring Disapprovingly While My Kid Has A Meltdown post. This reaction towards people with disabilities, and particularly people with disabilities that affect their behaviour, is the result of a society that doesn’t value or respect disabled people. A lot of this stems from the way disability has been treated historically. We’ve made great leaps forwards with legislation and treatment of disabled people, but social attitudes are a major barrier to that.
For your child to be able to live in a world where they’re not stared at, mistreated or thought of as inferior, where they’ll be safe and looked after when you’re gone, we need to start working on how people see them. Society builds its opinions of people based on stories – narratives presented over the course of lifetimes. How these narratives are presented have a huge impact on how people see other people.
There’s a particularly problematic narrative when it comes to disability.
It’s safe to say that the majority of parents set off on their journey of parenthood with the best scenario in their minds. They have the image of a perfect baby, maybe with his eyes and her smile. Nobody really thinks about disability, why would they? So when it happens, it comes as a shock. Parents are told that it’s perfectly OK to grieve for the child they feel they’ve lost. I get how that feels, really, you had an idea of how it would all go and it didn’t work out like that. The thing is, that’s not the fault of your child, or even your child’s disability. It’s the fault of a society that consistently erases disabled people from our consciousness.
Consider for a moment, if you had known and owned that your child may be disabled before you embarked on the parenting adventure. Your child’s disability might still have come as a bit of a shock, but you would likely feel less need to grieve the perceived loss. You’d have a frame of reference for your child’s disability in the form of disabled adults who are getting on with their lives. It wouldn’t be the end of the world that it seems to be now.
Then of course there’s the narrative of lost value. As a society we have this horribly persistent but unspoken perception of disabled people as being worth less. Of course we can’t say that because it’s not politically correct. It still sneaks into conversation though, in the form of terms like “full potential” and “not ideal”. This is a view we need to challenge. I get that everyone wants the best for their children, everyone wants to see their children succeed. In the frame of that wish, accepting disability can seem a lot like giving up. I promise, it isn’t. Your child’s neurology, or other disability, is a part of them. It’s a part that can make it harder to succeed, but it’s still an important part of them and a part that might one day become part of their sense of self and their identity. This isn’t a bad thing; it gives them the opportunity to own it.
Your child is under no obligation to overcome their disability. They’re well within their rights to make peace with it and move forward in a different way. In fact, I encourage this.
By no means do I mean give up on the pursuit of improved quality of life or better outcomes. What I do mean is that the main barrier to your child’s success is not your child’s disability, but the society in which it is allowed to disable your child. People use wheelchairs, fight for the installation of ramps, wheelchair-accessible lifts and wide enough spaces for wheelchair users to get around comfortably. People have varying levels of vision, fight for libraries to have audio-books and Braille copies. We don’t need to work on fixing our children, we need to work on fixing the world that they live in so that they can enjoy the same opportunities that their non-disabled peers can.
The sad thing is, while society views your child as a burden, as a tragedy, they will not work to make the world a better place for your child. If the narratives they hear are focused around all the negative aspects of your child’s condition, and never mention your child’s wonderful humanity or model respect for your child, they’re never going to learn to value your child.
I want the same thing you want. For your child to grow up happy, with all the opportunities, rights and privileges afforded to their peers. I don’t believe that your child should have to change to earn those rights. I believe that society needs to learn to embrace and support your child. The only way they’re going to do that is if we, all of us, improve the language we use around disability. Neither denying and sugarcoating nor demonising nor pitying. Valuing, respecting, recognising the humanity.
You can’t tell your child’s story, only they can. When you tell your story about your child, remember that you’re colouring the perceptions of the world. You may be colouring your child’s perceptions of you. Make sure that, when your children come to judge you, there is little for them to forgive.