I’ve turned my back on the oughtisms of the normal parenting world. My son’s autism got squarely in the way of him doing what all the parents around us were doing: the best kindergartens; the latest baby diets with the best brands; the best extra-curricular classes; the right social events; the latest child fashions, etc. I was just happy to make it through a day without being bitten too often, with a child who was at least eating something (other than my skin), and not in endless meltdowns. It’s not that my standards or expectations were low. It’s just that the extreme challenges in my son’s life made the things normal parents worry about, seem minor, ridiculous and irrelevant.
Enter the world of autism, where my family fits and belongs. This is our normal. This is the community within which we have the best chance of being understood and accepted; where our concerns for our son are predictable and well-known, and the problems we face are met with suggestions and help, rather than shrugs or ignorant judgment.
But the world of parenting an autistic child, comes with its own set of oughtisms.
It’s not just what treatments and therapies you “ought” to do, since those questions can often be decided by science and evidence. I can live with and understand those attitudes and why moral judgment gets attached to the choices to do or not do a particular type of therapy. No; the “oughtisms” I have in mind here, are the same sort of oughtisms I referred to at the start of this post, but in the autism parenting world. They begin at the point of diagnosis. My son was diagnosed by a perfectly good (and free – State system) developmental pediatrician, who works at a children’s hospital, and also lectures at the local university. But apparently that was the wrong thing to do, I ought to have seen pediatrician X who just about everyone else had seen, he’s the popular choice that everyone adores. (He’s also the dodgy doctor I referred to in a previous post, by the way.)
Then there’s the choice of private versus public of the exact same therapies (private apparently makes you a better – though poorer – mother). You also better choose the right supplier of supplements for your autistic child – organise bringing them in through the right overseas provider yourself, it’s just not the done thing to go through your doctor, even if it’s the same brand.
School choice is important of course, but apparently it’s not about choosing the right school for your child and their needs, it’s about choosing the “best” (by what frickin criteria, I’m still not sure, but the best is always apparently a private mainstream school, never a special-needs school).
Make sure you join the right autism charities – sign up with the right one and you’re a great parent and advocate, join the wrong one and you’re a traitor and outsider. Nevermind that the two charities have a partnership agreement with each other and promote the same approach to autism. (Keep an eye out for the splinter-groups too: A while ago a local autism charity had a branch break away and start its own location and divergent focus, and I ended up unknowingly promoting one, even though my own views matched the other. I was praised for “doing the right thing” before I’d realised what I had even done.)
Even your most personal feelings, attitudes and experiences with autism, can be subject to the oughtisms of the autism parenting world. You feel a certain way about autism, but it’s not the “right” way; you’re meant to love it, no hate it, no be indifferent to it, no accept it, make that reject it. Your experiences with autism were dreadful? Well that’s your own fault since your attitude sucked, no it’s society’s fault for not being accommodating enough, no it’s Big Pharma’s fault, and if you’re not actively fighting to change yourself / society / Big Pharma then by golly you’re part of the problem. You ought to care more, fight more (whatever it is you’re meant to care and fight about).
You ought to blog about what you think and feel in regards to autism, it will help raise awareness apparently. This makes you a good mother. Pat on the back. No wait, blogging means you are taking time away from your child – you should be on the floor with them right now, stop reading this dribble, I shouldn’t be writing this dribble, the mere act of my each key-push is evidence of my unfitness to be a mother.
Remember too to sacrifice everything for your child – your money, your career, your marriage – the more you lose the more evident your dedication to your child’s future. Oh but don’t be a martyr, because that just shows you’re actually selfishly using your child to fill an empty hole in yourself; being a martyr is really all about you, not your child. You try to get the balance right, but there is always someone ready to tell you you’re not doing enough for your child, or you’re doing too much for your child, or you’re not doing enough for yourself… you cannot win.
Trying to win – to match everyone else’s (often conflicting) ideals of what you ought to do – will just leave you exhausted, self-doubting, confused, and quite probably rather pissed-off without quite being sure who or what you’re pissed off at. They’re all just trying to help you… right…?
Well no. Sometime they’re trying to line their pockets, or their friend’s pockets, by their suggestions. Sometimes they’re trying to make themselves feel better about the versions and providers of treatments they chose; if they can convince other people that they made the absolute best choice then it makes them feel more sure in their rightness. Sometimes they’re trying to just feel superior, and need someone to appear inferior (that’s you, who must follow their advice and insights on pain of being otherwise judged unworthy). Hell, sometimes people just like the sound of their own voices, and you’re just a great big walking depository for their echo.
So I’ve had to learn to take a deep breath and realise that there is nothing new or particularly different in this. It’s just what’s happening in the normal parenting world, but its revolving around autism. In the same way that I had to realise a heck of a lot of the advice I got as a new parent was just endless oughtisms, I also had to realise that a lot of the noise I currently get exposed to, is oughtisms about autism of the same degree. I keep my eye on the science and the evidence, and make my decisions based on that. I acknowledge and accept the emotions I have felt and do feel about autism and my experiences with autism, without letting others oughtisms re-label my emotions as “incorrect” or “immoral.” (They’re just emotions, if they are based on factual error or lead to objective harm, then work on the factual errors or argue against the actual harm; let people feel what they feel without turning it into a guilt-fest, there’s enough of that going around already.)
There is a place and value in recommendations about service providers, and in debates about attitudes and emotions, in all these things so long as the moral judgment doesn’t insidiously seep in and lead to others saying you are a worse parent for not following (or better parent for following) their ever-changing autism oughtisms.