I’ve recently compared myself to a swan.
Gracefully gliding above the surface while frantically paddling below.
It’s a great metaphor for how it can feel being autistic.
As someone who masks often, it’s rare that anyone can see the internal struggles I’m dealing with. I’ve often been told that I’m hard to read, it takes me longer than most to ‘find my feet’ in a new environment, and I tend to shy away from situations which require small talk, so you’ll often find me skipping lunch in the office. That’s just a whistle-stop tour of my experience of living with autism.
But for autism awareness week, I wanted to share a different side to my story.
Being a Mum of an autistic child.
Being autistic is difficult, but parenting a neurodiverse child has its own challenges.
As a Mum of two, the swan metaphor perfectly fits with what it’s like to be a parent too. We’re constantly juggling every aspect of our family’s life. That’s the same whether you’re neurotypical or neurodiverse.
When you add the challenges of neurodiversity into the mix, it can be a very lonely road to travel.
From the stares from strangers mid-meltdown because of over-stimulation to the constant battle of getting them to school when they will do everything in their power to avoid going (including running away).
We’re constantly working out our children’s triggers, ensuring that we do everything possible to avoid them. When they do inevitably come, we deal with the meltdown. For some parents, that means being hit and shouted at. For others, it’s dealing with the tears and the heartbreak or even complete silence from a shutdown.
It’s quite frankly exhausting because we never switch off from it. We learn how to function and continue like everyone else. Only our ‘normal’ looks quite different, even if you don’t see it.
We become swans.
But while we may look like we have it all together most days, there are so many things that can help us feel supported and less alone.
Flexibility at work is key. When we’re late to work because it’s taken 30 minutes and 3 teachers to reason with your child to go into school, the last thing we need is the guilt of being late on top of the guilt of forcing your child into school.
Knowing we have the ability to put our children first enables us to know we’ve done everything for them at that moment, and once we start work, we can give our job 100%. We want to give everything we’ve got to our job during work hours because, often, our job is our safe space where we get to be us for a while.
So with all the compromises on being flexible with working hours comes the commitment of a hard-working Mum wanting to come and do a good job at work. To find something she feels she’s doing well in because guilt is rife in all parents but especially in parents of neurodiverse children.
It isn’t just about the flexibility, though, it’s the understanding and education around what autistic people need, and it should begin before a diagnosis.
We’re constantly trying to work out what our child needs to survive and be happy. Usually, we’re doing it with very little professional support. An autism diagnosis currently takes several years from the point of referral (for most), so as parents, we’re stuck in limbo.
A lot of schools are supporting us the best they can without a diagnosis which is great, but it also comes with several meetings (more time we need to work around).
So, please don’t belittle our time away from work as being a ‘part-timer’ or follow up the challenges our family are having with ‘we’re all a little bit on the spectrum, aren’t we?’.
While we may all have some traits or tendencies that link to autism, and yes, we have a lot of time to make up, we really are firing at both ends of the cylinder.
We're trying to be the best parent we can be to our autistic child and the best we can be at work too.
At times, it feels impossible.
But it’s not all doom and gloom.
Our children are special.
They show their love in different ways and bring so much joy and laughter, just like a neurotypical child.
I’ve learnt so much about trains and space since having my Son because his interests have become family interests.
While my daughter is too young for us to identify if she has autism yet, I won’t feel as much fear or worry this time around, knowing that with the challenges comes a whole lot more.
Please always remember to be kind and to offer words of encouragement and support where you can, because we always appreciate those that make the world a better place, especially for our neurodiverse children.
To hear more stories this World Autism Acceptance week, read Lucy’s story on her experience of living with autism and Freddie’s blog on How to Make the Workplace More Accessible for Neurodiverse and Autistic People.