I used to think Autism was such a scary word but I know now it was more I was just uneducated. I knew the basics and had surface knowledge (more than most actually), but no understanding about what it truly meant or what it would mean to have a child with an autism diagnosis.
I vividly remember the diagnosis stage ‘what a relief! Now I can have access to support and can understand my daughters behaviour’. All true but I know now that was a sham, that positive outlook was how I should have felt (wasn’t it?) so I made myself believe that I felt it. But reality was I was scared. Shit scared actually.
Wouldn’t it be great if there were some guidebook that navigated you through all of the autism ups and downs!
But that’s not how it works, you need to immerse yourself, feel the feelings, and navigate through the hard days to gain that inside information. Because an autism diagnosis is unique to each individual.
Things I wish I knew back then.
Your child’s autism will fascinate you.
It's true! How they view and perceive the world is fascinating.
Reality is their brain is wired differently so they are different. But different isn’t bad, in fact it can be great.
My 7-year-old daughter is in fact the most interesting person I know. I find enjoyment in her quirks, fascination with her unique way of thinking and humour in her quick wit, sassy, blunt straight to the point demeanour.
I am not the only one. Those around her also appreciate her distinctive characteristics and the joy and wonder she brings. It’s a pretty cool quality to have simply by just being unapologetically herself.
You learn as you go.
I am 7 years in and have so much parental autism wisdom now just as much as not having a clue most of the time.
Yes you get the autism diagnosis, which allows you to access the support to begin to gain an understanding. But a lot of it is trial and error and you learn and adapt as you go. New challenges present themselves as they grow and new triggers and anxieties will surface. You aren’t meant to have all the answers every single day, sometimes you nail it and sometimes you just admit defeat but you're learning each time regardless.
Autism is unique to each individual
I was confused in those early days as my daughter didn’t fit the typical autism ‘ checklist’ and being female her traits were even more unique to that of what I anticipated.
Understand your child’s unique triggers and know that her behaviour, meltdowns, anxiety and distress will stem from this. They have their own distinctive mannerisms, coping mechanisms and regulation strategies that do not have to fit the stereotypical list.
Learn about them. Immerse yourself in their needs and that is the key to understanding your child.
Find support for both of you.
There is so much support out there in the world of autism – therapists, psychologists, classes, social groups…it's wonderful to be able to access this support to assist you in navigating through the complex world of autism.
Finding the right therapists and places that are a good fit for your child are crucial but what is equally important is to find the ones that bring a good vibe for you as a parent too.
We were given the name of a highly recommended Behavioural therapist once and were lucky enough to be given a cancellation spot. But right from the moment we met there was something off, my daughter responded quite well to her but I couldn’t shake the feeling that it wasn’t a good fit. I trusted my gut and we looked elsewhere. We now have an Occupational therapist and Behaviour psychologist that my daughter feels comfortable and safe with but that I feel relaxed sharing the ups and downs of the journey with. More often than not I leave the appointments feeling like I too had a therapy session, I feel heard and supported which is everything in a somewhat isolating and lonely journey.
It's ok to recognise that it is hard.
Yes I love my daughter and her unique autistic brain. I find joy and happiness in the journey and celebrate all of the little milestones along the way; I wouldn’t change her and all that jazz.
But! It is hard, so very hard and it’s only lately that I have been admitting this a lot more openly. Reality is I wish she didn’t have so many challenges to navigate through, I wish she was able to cope better, I wish she didn’t have so many intense meltdowns and that I didn’t have the feeling that I was walking on eggshells day in and day out. These are normal feelings, they are aloud and they need to be recognised and respected.
Some weeks are harder than others and sometimes you need to reach out and seek help to deal with the tests that autism brings to the family dynamic. You love your child immensely but you're allowed to find them challenging and their diagnosis hard, it doesn’t mean you love them any less. It just means you need to pay attention to your thoughts and feelings and find ways to cope during these more difficult stages.
You will become an advocate
You will be your child’s biggest supporter, their teacher and their safe place. You will learn to not shy away from admitting your child is autistic but advocate and educate others.
In the early days I used to make allowances for my daughter without even knowing ‘Oh she is a bit tired’ hence the behaviour. I learnt that people didn’t understand and it made me feel less alone just fitting into the norm.
But I have realised that people do need to understand and how are they ever going to be educated on autism if we continue to shy away from talking about it. I’m not ashamed of it, I never have been so why should I hold back from talking about it. Today I very much explain why my daughter does particular things or acts a certain way because it’s the reality; Her brain is wired differently so of course behaviours will be unique to her. That is autism.