By the time my 7yo eldest daughter Polly’s high functioning autism diagnosis was received, it was fully expected. I had spent a long time fearing a big scary gastro problem, as I had major stomach surgery as a child, and she appeared to have similar symptoms to me – reflux as a baby, eczema and a food intolerance list as long as your arm.
When Polly was five we had an extensive investigation done under general anesthetic by a top peadiatrician. He searched high and low for every disease and disorder known to man, but all the tests came back within normal range. It was apparent that there was nothing medical wrong with her.
At that point most parents would be rejoicing, but as thrilled as I was that she wouldn’t have to go through what I had done at her age, I couldn’t revel in the good news. The minute I was given her results I knew, in the pit of my gut, that an autism diagnosis was in the post. It was just a matter of time.
Polly bucks the trend on many of the so-called classic autism red flags. She has always been very articulate, even as a toddler, she can hold eye contact, she’s sociable and has lots of friends.
At five years old, she slept worse than a newborn baby, often waking up ten times in the night, and having monumental meltdowns along the way. She was incredibly overwhelmed by school, even though for the most part, she enjoyed it. She’d go into uncontrollable fits of rage afterwards, sometimes for hours, and there would be no reasoning with her. Her numerous food intolerances had caused us many problems over the years, and her exclusion diet was a constant source of irritation and stress.
The list could go on, but I don’t want this to become too much of an essay. Click here for a blog I wrote at the time of diagnosis which has more information.
Autism is no walk in the park, and a lot of blogs out there will have you believe that all it takes is a bit of positive thinking to become a super parent. The reality can be grim, but knowing what you’re up against in life usually helps. So here we go, my two pence, for what it’s worth.
If you think that your child might be autistic…
Google is not your friend
Hence the title of this post. There is a minefield of information out there, but ultimately no-one knows your child the way you do. I have personally found reading other parents’ stories useful to a point, but I’ve also been made to feel horribly inadequate by some. The handful of other families I’ve come across with our exact dynamic have brought me the most comfort.
Brace yourself for a fight
With your doctor to start the diagnosis ball rolling. With the health services during the diagnosis process. With the school to gain access to special needs services. With your other half if you have one. With yourself – because you feel conflicted in almost every decision you make. Each step of the way you are more than likely going to have to do battle to get the best for your son or daughter.
It’s okay to grieve for the family you thought you would have
You are not, I repeat NOT, a robot. You have feelings, and it’s perfectly okay to acknowledge them. Autism is by no means the end of the world, but there will be some form of adjustment period while you come to terms with your new future. My suspicions about Polly’s autism came a few months after our third child was born, and although I always wanted four children, I had to make peace with knowing that we would be stopping at three. I know without a doubt that another baby would tip us all over the edge.
You will do anything and everything it takes to help your child
This time last year we tentatively sent Polly back to school after the summer holidays. We’d made progress, and I had strong suspicions that school would undo our hard work. That’s exactly what happened, and by the October term (seven weeks later) we were at breaking point. We made the decision to home educate her, because there was no way we could continue sending Polly to school when she was suffering so much. It was, wholeheartedly, the best thing we did, but I’m not sure we’ll do this for her entire education. We’ll continuously assess our situation, and her needs to make appropriate choices. Parenting is a constantly evolving journey, and not being afraid to make the really hard decisions will put you ahead of the game.
It’s all about early intervention
Some people will argue that we didn’t used to have high functioning autism thirty, forty years ago, so why pursue a diagnosis when they can cope just fine? The thing is, if your kid is like Polly, they aren’t coping fine, they are just about holding it together. The sooner you can start to properly understand their world, the sooner you can start equipping them with the tools they need to cope with the wider world. Also, be it creating good sleep hygiene, figuring out meltdown triggers, reducing stress levels, or working on improving physical strength, the sooner you get started, the better.
Comparing your autistic child to their neuro typical counterparts is completely futile
Comparing kids in general is never a good idea, so just don’t do it. It’s unfair and no-one benefits.
Do whatever it takes to create you time
Whether it’s exercising, doing a creative class, lunching with friends or staring into space, you need some time that is all yours. It has been said on many sites that autism families undergo similar stress levels to combat soldiers, so escaping the trenches once in a while is absolutely essential. Don’t feel guilty about having time out, it will do everyone the world of good.
Above all else, always trust your gut
As a parent and in life in general, once we are in tune with our instincts, they will not let us down. If your gut is telling you that there is something to investigate, then don’t delay.
Very best of luck, and thanks for reading ️