What's the single most important and beneficial thing YOU can do as a parent of an autistic child?
This article is based on the script of the video of the same name originally uploaded in April 2022
You can watch the video by clicking on any of the images in the title or body of the text.
Hi. I’m, Quinn and I’m Autistic.
Welcome to Autistamatic.
Parents of autistic kids often have a hard time when their child is diagnosed as autistic. Mums and Dads face a flood of pessimistic, doom laden scaremongering from multiple directions. Doctors, psychologists, charities, social workers, and educators immediately start handing out leaflets and recommendations detailing the mountainous parenting task ahead. Words like “coping”, “challenging” and “mitigation” become regular features in your vocabulary whilst every hope you had for your child is demolished before your eyes.The picture painted for most parents is not a pretty one and it can have a profoundly damaging effect on the parent/child relationship. Parents are routinely pushed to shift their expectations downward and the knock on effect that can have on the child’s future can be devastating.
It doesn’t have to be this way. Whilst the autistic community and advocates like myself put in immense efforts to guide a stubbornly resistant establishment towards better understanding and attitudes towards autistic people, there is something simple and personal that every parent can do which can make a huge difference. You can do it at any time, but the sooner you do it, the more impact it makes. Even the parents of autistic adults can help mend damaged relationships and forge new bonds.
The number of adults being identified and diagnosed as autistic has been growing for years and will continue to do so for some years to come.
Around 2 thirds of the autistic adults alive today don’t even KNOW why they see the world differently and have navigated their lives through barriers and over hurdles that might not have been so obstructive if they’d known. So many of those adults have fractured relationships with parents and yet even after decades of disagreement, there is hope of building new bridges of understanding.
Some parents do this without being prompted and in almost every case it has led to happier lives and better prospects for both parents and children. We’re only now starting to bear the fruits
of these stronger relationships as those autistic children reach adulthood with a more optimistic perspective on life to those of us who grew up without it. Those pioneers have shown us a way that the rest of us can only envy for having missed out on ourselves, but sets us an example to follow.
There is still much science doesn’t know about autistic people, not helped by researchers who persistently keep looking in the wrong direction, but there is one thing we know without any doubt. Being autistic is a family trait. It’s passed down through the generations so if there’s an autistic child, there’s more than likely an autistic parent, or if not, an autistic grandparent, aunt or uncle.
Yes the random nature of mutation means that the complex combination of genes that makes someone autistic can arise spontaneously on rare occasions, but the vast majority of us inherited it. So the best and most important thing any parent can do is ask themselves “Am I autistic perhaps?”
Even before your kid gets that fateful slip of paper with “autistic” written on it, you might want to cast your mind back to your own childhood and see how much it reminds you of your child’s life now. Does anything strike you as familiar? Any bells ringing?
You may have all the trappings of adult life around you now. You may be working, might even have a successful career that you worked hard for. You might have friends and hobbies, an active social life and hundreds of followers and friends on social media, but does that mean you’re not autistic?
If you listen to the experts of the establishment then you might think it does. You’ve been told about all the uphill struggles your child will face, even if you’ve been told they’re “high functioning”, and you didn’t go through all that. You didn’t need 40 hours of behavioural therapy every week to learn to fit in. You didn’t have meltdowns that scared YOUR parents, and you don’t remember needing speech therapy. You were a happy, well adjusted kid who didn’t get into trouble…
Except…
You do remember those kids that ganged up on you making you hide in the school library during breaks, but that’s just part of growing up, isn’t it. You were just unlucky that they singled you out and called you a weirdo. You remember getting really angry and upset at your parents and teachers, and yes there were accidents that broke things, but that was justified. You had REASON to be angry, not like the random meltdowns your kid has.
You tell them to stop categorising their Lego by size and colour and tidy their bedroom. Why aren’t their books in alphabetical order and their closets arranged tidily?
You plead with them to eat their vegetables. At least you’re feeding them healthy food, not like the junk you got as a kid that you’d hide in a napkin then throw into the toilet later.
You didn’t get into trouble at school. Yes you always got bad marks in Maths despite being top of the class in English, but you showed them now your job relies on your communication skills.
You didn’t have any social difficulties. You had a succession of “best friends” instead of having a group of friends, but there’s nothing unusual in that. It’s not as if you were always the last one to be picked for the team. There were always 1 or 2 kids picked after you.
You pride yourself on your sensitivity to other people’s feelings and how that’s made you a confidante that your friends trust with their secrets, and you never betray them because you’re an honest, decent person who’d never hurt someone intentionally.
You learned when you were young that you have to bend to fit in and sometimes the ways you bend might be uncomfortable, painful or may haunt your thoughts, but that’s the price everybody pays, don’t they? We’re all putting on an act in public so you’ve just coped the way everybody else does.
Haven’t you?
Perhaps you’re NOT so different to your child after all. Perhaps some those things you accept as “normal” aren’t as common or everyday as you think they are.
Why were YOU the kid that got bullied?
Why couldn’t you have been be praised for your language skills instead of punished for your poor maths scores?
Why do other people get away with lies when your truth is so often doubted?
What aspects of yourself did you have to hide to be accepted?
How much of your own pain and discomfort have you had to bury out of sight to make other people feel more comfortable?
Every day I interact with adults who discovered they were autistic following the diagnosis of their child or another close relative and their number grows daily. The best thing you can do for your autistic child, even if they’re fully grown, is to recognise what you share with them and be their companion as they re-discover themselves armed with new knowledge. Don’t set them on this path with no-one by their side.
Be their fellow traveller and their friend walking the path together. Even if you’re NOT autistic yourself, focus your attention on the things you share with your child, the common ground instead of the differences, and build on that towards better things rather than try to change them into an empty but obedient shell of what they could be.
We’re not MADE autistic, we’re born autistic. Once you recognise that and understand how much you and your child have in common, you’ll be laying the foundation for a better future for you both. Those of us who never got that chance will always pay the price, but you don’t have to.
You can watch the video by clicking on any of the images in the title or body of the text.
(c) Autistamatic 2021