Talking and Communicating are not the same thing.

There’s a reason I struggle with the terms “high functioning” and “low functioning” autism. A lot of this has to do with how autistic traits may appear to the outsider, and how they actually  are for the autistic individual.

People see a child labelled as autistic who is talking with others, giving positive & open body language and fulfilling daily tasks and they assume that they’re a little less autistic than an individual who is non-verbal or who needs support with daily tasks.

This is simply not the case. And it is actually quite judgemental and harmful to assume that it is.

There’s really no need for these “less” or “more” autistic labels. Because they are needlessly divisive. It is all autism and every individual with the diagnosis presents uniquely. Just because you don’t see someone struggling doesn’t mean they aren’t. Autistic people are super clever at camoflaoguing their struggles and these happen silently:

You don’t see their anxiety.
You don’t see their sensory struggles with noise, texture, smell or taste.
You don’t see their social overload.
You don’t see their need for control, organisation & perfectionism.
You don’t see how they hold it all together when out and then meltdown for hours and hours once home.

All these struggles still exist however, but they aren’t always obvious at all to onlookers.

Which brings me to the topic of today’s post: communication.

Just because an autistic person can string sentences together, remember the names of people, places and objects and can have face to face verbal interaction with others doesn’t mean they don’t have trouble communicating. Often they may have trouble with receptive speech, identifying & expressing feelings and emotions and working out the nuances within social conduct – the “grey” areas, like sarcasm and metaphors.

Sno lately is struggling with the process of having a thought or a problem/worry in her mind, and getting that thought or problem expressed verbally. This is for both at home and school. When I asked her how it makes her feel, she said it’s like this huge grey jumble of “stuff” in her head and she can’t work out which is which and what is what – it’s all mixed up and tangled. Basically, getting her thoughts from her head into sentences in her mouth that make sense is really hard. So what tends to happen a lot at the moment is lots and lots of screaming meltdowns because she’s so frustrated and with all this frustration, she still isn’t able to express what she needs to. It’s a really tricky situation for everyone.

So we are going to trial a new concept, to help. Yesterday I bought her an empty exercise book which I labelled and I’ve encouraged her that anytime at home where she thinks of a problem at school, she needs to jot it down in her book with the day’s date and then when she gets to school, she needs to give it to her teacher. The contents of her book don’t need to be complex, just words that trigger her memory so she is able to slowly work through them with her teacher and support person at school in a quiet space. We are also going to access a few psychological sessions for her to aide in the process, too.

I’m hoping it helps, even a little bit. My heart goes out to her, and I only hope this simple idea can provide her with a small sort of anchor to keep her adrift and keep going, keep trying.

If you’re autistic and you experience this similar sort of thing, I’d love to hear from you. How does it feel? What do you find helps?

1 Comment

  1. Sigh. Sno, I SO totally understand your feelings of a grey jumble. To me, it is like a huge pile of Christmas lights that I need to untangle; patiently, purposefully and methodically. Life isn’t waiting for me to have them untangled by August. Christmas has been and gone.

    In response, I often just stay silent. The ensuing untangling of what I meant, the accusations of my nastiness/inhumane feelings/what have you, the exasperation of effort…all prevent me from trying. I used to try. A lot! In my 20s, I’d not shut up. But I’d get into a lot of verbal jousting, from which I’d often end up in tatters. Now, I pick my battles 99% of the time.

    Most of the time, I just communicate to help young ones like you, Sno, or to issue a compliment. Otherwise, I live in my head. I don’t want a world like that for you, Sno. My eldest, Sana, is 14 and feels the same too. He gets frustrated and wants to scream the entire contents of his brain from a mountain. I can’t help him either.

    I sincerely hope that you and your mum find a way to help you not live in your head, and to contribute peacefully to the world.

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