Really Autism, yeah really!

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‘Really Autism? You going to start before I even have a cup of coffee?’

Yes really.

That was posted in an Autism ‘support’ group. My friend and colleague Rochelle has written about it here. 

I couldn’t resist replying ‘Really Neurotypical? You need a coffee first?’

The poster replied asking why I was offended. I explained I am Autistic and I found the fact she referred to her son as Autism not as his name hurtful.

I give her respect for the fact she stepped over to my point of view and apologised.

The fact is there are two types of Autism face book groups, there’s the parents groups, then there’s the predominantly Autistic groups.

A group filled primarily with carers and parents often has a common theme, when will this end? Autism is winning here! And my favourite……I love my child but I hate autism!!

Let me be clear, I get tired. I have days where I’m cleaning up faeces once again off the wall/ carpet/ TV.

I have days when the toilets flooded, I’ve been bitten and while I’m cleaning up the toilet water there’s a crash in another room followed by hysterical giggles.

And I bow my head  and sometimes I cry.

The reason I cry is sheer exhaustion and the worry that I’m not doing enough,that I’m not quick enough to clean one mess before moving to the next one.

I cry for what I feel is MY failure.

For my children I feel only love, I feel exasperation that the sensory play I put in place is not always enough to satisfy the seeking they so desperately require.

Faeces I can deal, as an Autistic adult I can confirm that it’s about control. It’s ours therefore we can control it, it also feels nice to play with.

It’s the same sort of consistency as gloop mixed with play dough. I remember being little and holding a bowel movement all day from nursery to home because I knew I could play with it, it was the one thing that was predictable and I knew if I was quick enough I would get to hold it.

The smell never affected me, neither did the taste.

Now as an adult I can see that was a seriously unhygienic activity, but as a child you do not see that, so please know your child is not taking a personal vendetta against you.

You’re irrelevant to your child in this, it’s a personal sensory seeking control based activity.

Redirect with play dough, gloop and shaving foam anything gooey that can give the same feedback.

Meltdowns, again are not to be taken personally. They are a hike up of frustration that’s been simmering all day.

The explosion over the sandwich being cut the wrong way or the biscuit snapping is NOT about the sandwich or biscuit. It’s about the expectation that that ONE visual thing, the one thing left they though they could anticipate had, in their eyes, failed.

So now mental chaos ensues, why couldn’t that one thing have been right?! What is everything so horrifically scary and wrong?

If your child is having a meltdown don’t talk to them or try to reason with them, step back and let them get it out of their system unless they are self injurious.

If like one of my children in a meltdown they attack you step back and try not to take it personally, you are their safe place and you didn’t make it all ok in time so they are angry with you.

It’s difficult not to have hurt feelings and cry if you need to but also know that you are the rock your child leans on.

Autism isn’t winning in your house, if your child’s having a bad day then that’s what’s happening.

No separate entity to your child is ‘winning’.

No ones losing either.

Breathe………..

Recall that as bad as you are feeling your child feels a lot worse.

They are a unique and wonderful being, they will face adversity and spite often.

Advocate, cope and hold your head up.

You got this.

You’ve got this.

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Comments

  1. CC  February 3, 2016

    This is a really good post, but I just don’t think there are many who will listen. It’s far easier to pull the woe-is-me card and whine about how their life is so hard, and maybe blog about their child’s toileting issues and lack of verbal communication. It takes real work to be a GOOD parent to an autistic person, and so many either buy into the Autism $peaks doom and gloom, or they just refuse to listen to actual autistic people. Maybe I’m pessimistic, but I trust very, very few parents of autistic people unless they’re autistic themselves, or at least neurodivergent. NTs have given me every reason to be wary.

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