Autism, my son and me

My son, j is 5 and is autistic, he’s hard work but also a total joy. He’s funny, bouncy, a ball of energy. He likes the colour blue and can recite some numbers but not, certainly not number 5.

He loves bathtime, but gets very tickled of you try him under the shower. He likes to eat bananas and apples and lots of other fruits. He drinks his juice (dilute) and would do so near constantly if he could.

He wants to chew things and we’ve had to get him special plastic sticks.

If something is scary or exciting on tv he has to run of the room. He loves Phineas and Ferb and Abnie and Teale, he’s not as keen on Mickey Mouse as he was, but still will cuddle a Mickey.

He loved the lego movie but it took us weeks to figure that he was singing everything is awesome from the film rather than having a new random sound.

He would have been in primary one if he was different, he’s not as he can’t toilet himself, his speech is poor and not always coherent, he doesn’t focus on a toy or activity and he needs help to get dressed, eat and drink. He can bite or hit when stressed or upset and giving him a cuddle can see you headbutted.

Last night he wasn’t tired enough and was up until after 10pm, the change in the clocks with summertime doesn’t help either. When he does sleep he can be awake at 0530, first light.

We’re a ‘normal’ family with a younger son who is three and my daughter who is ten. J can be at times ahead or behind the three year old. He loves cuddling his big sister, but can’t really interact with her to play.

Monday to Friday, the boys are at different nurseries at different times and there’s an insufficient gap in time, between the boys going out and coming in to really do anything. We can’t fault either nursery, they’re good at what they do and the hours they work are the hours they work.

I have a decent-ish steady job, I do have to pay maintenance for my daughter, we have the usual household ins and outs and past debt.

It’s not easy having a family on one income and certainly not what we planned. It inhibits any ability to move, obviously we’d like a house with a garden and a bedroom for j too.

We do what we can in activities and holidays, save hard, try not to overspend and if we have to stick stuff on credit cards. It’s hard we’ve made sacrifices and there’s simply stuff we know we can’t do.

The challenges are there, but in learning more about autism, the more I learned about myself and the more that things clicked for me. I can’t stand bright artificial lighting, I struggle with eye contact, am generally rubbish in social situations and I have interests, hobbies that are repetitive and dull.

I was finally brave enough to ask about an adult diagnosis recently after my first attempt to do so failed.

I’m scared that I will be diagnosed as ASD, probably in what was once called Aspergers, I do function, although I have recently realised that I am
likely to be heavily conditioned, through my own upbringing and that’s no fault of my parents or siblings as in a lot of ways I pass for normal.

I’d also be relieved to be diagnosed, I’m so worried that a doctor will say no, you’re normal, I’ve never exactly felt normal or been normal, I can be on the fringes of groups of people, I can do stuff, some stuff exceptionally well, but I can throw a tantrum myself, I can have meltdowns, I suffer from myself at times.

I hate the use of the multicoloured jigsaw missing piece symbol for autism, there’s nothing missing from J or me, we have all the bits we should have, our minds just work differently.

If you are a parent of an autistic child please consider what using that symbol on social media is saying.

You’re saying your child is missing bits, when in fact they just function differently to the neuro-typical or so called normal people.

I’ll certainly never use it myself and would discourage others from doing so.

So, it’s hard, it’s difficult for us as a family and individuals, we do what we can.

We try and get the support and help that J needs and we try to be a normal family wherever we can do so. Not easy, but it’s not easy for everybody, such is life.

Thanks for reading. I’ve needed to write this for a little while.

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