THE BLOG

When Helpful Advice Isn't Very Helpful

27/07/2015 16:37 BST | Updated 27/07/2016 10:59 BST

It's been six weeks since I became an autism parent and I would like to share how I'm feeling about it.

I'm angry. I feel mad at autism for robbing me of the perfect little family that existed inside my head.

I'm upset. I hate that my two little ones have suffered so much already. From the violent outbursts, name calling and general unpleasantness.

I'm sad. That my husband and I have to be the perfect parents 24/7 otherwise all hell breaks loose. And it does. On a regular basis. Because we can barely be good enough parents most days on this little sleep and this much stress. In my darkest moments I wonder if my marriage is strong enough to survive autism.

Unhelpful Advice

I thought it might be useful to share my top three pieces of unsolicited 'words of wisdom' that people insist on giving me. I can't imagine I'm the only parent in this situation that finds it annoying and upsetting.

"Oh wow, she seems so normal!"

Well yes that's because she is. She's not green and she doesn't have two heads. She's a high functioning autistic child, capable of utterly amazing things, but she gets overwhelmed with life a lot easier than other kids do.

She is also incredibly good at holding it all together when she has to, which makes her invisible disability even more invisible. Perhaps next time someone says this I should ask them to define normal. I lay money on them not being able to.

"I know someone whose kid had autism, and they cured them by treating them like they didn't have it!"

This one hits a really raw nerve, because it implies that there are things hubby and I could and should be doing but are not. Perhaps if we had just one child, and all our energy could go into focusing on that one child, and in doing everything by the book all the time, then maybe, just maybe, this strategy could garner positive results.

We have two younger children to consider, and not much in the way of help. I spend most of my days putting out mummy fires and trying my best to choose my battles and avert meltdowns. Often though, even with the best of intentions, it all kicks off in a way that can reduce me to tears in a heartbeat. It is absolutely impossible (not to mention unfair) to focus all your attention on one child if you have more than one.

"I think my kid has autism, but we aren't pursuing a diagnosis."

If you honestly suspect that your child is on the spectrum, and have decided to bury your head in the sand and pretend they aren't, then I hate to be the one to break the bad news, but you will more than likely live to regret that decision. Autistic children will find life so much more difficult than their siblings and peers. Us parents need to facilitate in equipping them with the tools they need to thrive in this world, which let's face it, is going to be enough of a challenge without additional needs being thrown into the mix.

I've had several chats with adults recently about their own diagnosis, and how much it's helped them come to terms with the difficulties they've faced all their lives. That finally after thirty, forty years on this earth everything makes sense to them. Early intervention is surely better than letting your child struggle?

A Curse

For my family autism currently feels like a nasty curse, but the sensible part of my brain knows it's only because it's all so new and raw. I'm sure that we'll find the light at the end of the tunnel soon, and will figure out all the ways to help our darling girl channel her anger and frustrations in a positive way. We will get through this.

For now though, please be mindful of what you say to me, and don't take it too personally if I'm a little bit sensitive. Navigating the minefield known as autism is not an easy ride!