Autism: The Children in the Middle

Kel Autism, Blog, It's a Tink Thing 9 Comments

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.

 

Tink and her best non-autistic friend. Can you tell?

 

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.

 

Autism: the children in the middle... There's a whole group of children with autism who are not often considered - the children (and adults!) in the middle! #autism

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9 Comments on "Autism: The Children in the Middle"

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Helen Needham
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EHCP is one of those words that shivers down m spine, especially in the months before our annual review. My son is in a special school, and doesn’t have many noticeable difficulties. It is only when you try get him to interact with people or do school work that you notice the challenges. After 2 reviews he still is being supported with his EHCP, and is making good progress. I wish you all the best as you approach your review, and that it is a positive outcome.

#spectrumSunday

Kate
Guest

This accurately describes my journey with my little one thank you

Helen
Guest

This really struck nerve with me. My son is exactly like this and we are currently awaiting a decision for his EHCP assessment.It went to panel yesterday but not holding my hope but know that he really needs it to make sure he continues to strive. Thank you

miriamgwynne
Guest

I coukd it’s agree with this more! I wrote recently how I felt those in the middle were so misunderstood. It’s a very scary place to be but you are not alone x

Stephs Two Girls
Guest
So true. I’ve often said that I feel we are the lucky ones; our girl also diagnosed young at 2 and a half, and I’ve always been grateful that she doesn’t mask; she’s mostly the same at school as she is at home. This has made a big difference in terms of how we have been listened to as parents, and I’ve heard tales from so many other families who are not believed and who don’t get the support. That’s why I feel I have to use the energy I do have to keep spreading the word and do some… Read more »
StarlightandStories (@2ndtimeMama)
Guest

Such an important post! This matters so so much, people really really do need to be aware of those that so desperately need the help yet don’t get it xx

Charlie Beswick
Guest

Great way of explaining ‘the middle’! Really enjoyed your blog x