There’s a lot written about autism: Asperger’s, ‘severe’ autism, non-verbal autism… But what we don’t see much written about is the kind of autism that sits somewhere in the middle of the spectrum.
The kind of autism where they’re not non or pre-verbal, but speech and language isn’t ‘normal’ either. The kind of autism where they don’t have a particular
obsession special interest or skill. The kind of autism where they don’t really flap or obviously stim. The kind of autism where they don’t need the assistance of a special buggy to get around, but can’t be totally left to walk free near dangerous places like water and roads. The kind of autism that looks like a ‘typical’ little girl – but not quite, if you look a little closer. Tink’s kind of autism.
You see, Tink sits ‘somewhere in the middle’ of the spectrum. That’s actually how it was described to us on D-Day, when The Hubby asked how severe they thought she was. And, it seems, they were spot on.
We hear a lot about ‘autism in girls‘ and how it presents differently to boys. Girls are expert at masking, learning coping skills so that they fit in with the crowd and don’t stand out as different. Girls often go undiagnosed until their teens, or later. Not Tink. Tink doesn’t possess the ability to mask. and this lead to a much earlier diagnosis for her, at the age of just three.
Tink’s ‘middleness’ made deciding where to school her much more difficult. On the surface, she ‘looks’ like a ‘normal’ little girl (I know, autism doesn’t have a ‘look’, but I think you know what I mean!), but, to those who know her, or a more experienced eye, there were differences and issues that meant mainstream schooling might not have been suitable. Her absolute inability to sit and carry our a task not of her choosing, for starters!
But, was she ‘autistic enough’ to need specialist education? We’d need an Education Health and Care plan (EHCP) to even access it, and what if she was assessed to not meet the criteria for issuing one? Or, not even offered an assessment at all? Her difficulties were there, but not immediately obvious – what if others just couldn’t quite see them?
Luckily, we had well-written reports from those who knew Tink well and could put those difficulties into words, showing that Tink did need the support that having an EHCP gives, as well as access to the specialist education she now receives and is thriving in.
But now it’s EHCP review time, and I’m petrified that my middle-of-the-road girl won’t make the grade. I’m stuck between feeling overjoyed that she’s making good progress, but scared that progress – the development of skills and knowledge she just didn’t have this time a year ago, will mean that she’s no longer considered in need of an EHCP. (That’s actually an option on the plan: ‘My EHC Plan needs to continue… YES/NO.’)
And, if that was the case, then what? She’d never cope in mainstream school and I couldn’t home educate her either, as she needs more than I can offer.
Despite my worries, Tink’s one of the lucky ones. She’s just the right side of the middle for her needs to be noticed and acted on. She’s had great educators and professionals who know how to craft reports that are truthful, but show a clear need for support.
What about all those other children somewhere in the middle? Those who maybe fall slightly to the other, side? Not quirky enough for their autism to be quite obvious, but not outwardly struggling enough, not non-verbal, or flappy, or ‘in their own world’ either? Those whose teachers ‘don’t see it at school’, therefore it must not exist? Those whose parents battle for an EHCP to get the support they so desperately need, but are turned down for even an assessment?
They’re left in limbo. Hanging around there, in that middle of the spectrum. Without support, the right education or even a diagnosis in so many cases. And that’s where they’ll stay, unless we can provide better education and training for teachers and healthcare professionals about just how broad the spectrum is and that it’s not all about ‘high’ or ‘low’ functioning.
So, here’s to the middle children. I see you.