‘Really Autism? You going to start before I even have a cup of coffee?’
Yes really.
That was posted in an Autism ‘support’ group.
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 Facebook groups: The parents groups and the predominantly autistic groups.
A group filled primarily with caregivers 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 or carpet or TV.
I have days when the toilet’s flooded and I’ve been bitten…And while I’m cleaning up the toilet water there’s a crash in another room followed by hysterical giggles.
I bow my head and sometimes I cry.
The reason I cry is sheer exhaustion and the worry that I’m not doing enough and 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 with and 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 personal sensory seeking a 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 thought they could anticipate had, in their eyes, failed.
So now mental chaos ensues, why couldn’t that one thing have been right?! Why 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 one of my children is in a meltdown attacks me, I step back and try not to take it personally. I am their safe place and I didn’t make it all ok in time so they are angry with me.
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 one’s losing either.
Breathe………..
Recall that as bad as you are feeling your child feels a lot worse.
You child is a unique and wonderful being, who will face adversity and spite often.
Advocate, cope and hold your head up.
You got this.
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What a fantastic write up! Great advice to pass on to parents/ carers. Thank you Emma x