Hayley’s ASD has been ‘undiagnosed’!

Tiger Mother’s had some great news – Hayley’s ASD has been ‘undiagnosed’! But Hayley’s confused and wondering how she will now explain to others about why she finds things difficult.

Well here’s a turn up for the books.

I’ve just come home from a hospital appointment to review Hayley’s ASD. She wasn’t with me – the letter said to come on my own.

I did a lengthy multiple choice interview with the paediatrician, covering detailed aspects of Hayley’s behaviour since a baby.

Then I was called back for the result – Hayley doesn’t have ASD. Even though for the last six years, we’ve been told she had.

Yes, he agreed, even given her deafness, she struggles in various areas of understanding, inference, social situations and learning, but it’s not ASD.

Autism

I’m confused but incredibly pleased and as Hayley’s arrived home from school I’ve told her that she’s been ‘undiagnosed’.

‘So I haven’t got ASD?’ says Hayley. ‘But you said I’d always have it?’

I nod and shrug.

“How will I to explain to everyone about why I find things difficult?”

She looks bereft – quite panicky. ‘But Mum, how will I to explain to everyone about why I find things difficult?’

Good question.

But it’s great news, I tell her. It means the areas where she struggles – socially, making inferences, taking in anything other than simple short chunks of information – she will likely progress as she matures.

“We assumed her ’otherness’ was part of her deafness”

In the first years of school, we assumed her ’otherness’ was part of her deafness, always one step behind, never quite in the flow, not quite gelling with her peers – missing lots of information whether spelt out or the subtle nuances and interactions at lightning speed between people.

She was almost always excluded by her peers; no one came round to tea. While her brothers’ party invites stacked up, there were rarely any for her, other than one or two close family friends’ children.

Hayley found it hard to grasp information, no more than one or two simple instructions could be retained at a time. She didn’t get jokes, couldn’t work out idioms.

She had expressive language problems, and other children didn’t have the patience to listen while she tried to get her thoughts out.

A speech and language therapist friend diagnosed Semantic Pragmatic Disorder – associated with ASD – and then the school’s Senco suggested a paediatrician assess her.

This involved me being questioned me for 20 minutes, Hayley seen for two minutes, and there it was – a diagnosis of ASD.

I was sad, mourned the person she wouldn’t become that I’d thought she would, worried about her future happiness.

But the main thing was to get her the right support – not that a diagnosis helped, with no SEN statement. And so ensued the battle we’ve waged ever since.

We’ve had fantastic support from NDCS, but there was no provision in school for ASD.

“It was hard to figure out which issues were due to deafness and which to ASD”

It was hard to figure out which issues were due to deafness and which to ASD. My own answer was to throw Hayley at everything in life I could, to gain as much experience as possible to help fill out her missing ‘insight’. Guides, judo, tennis, our local NDCS group and later Air Cadets.

Gradually we saw a change in her. Though still one or two steps behind her peers, as she matured she was ‘getting’ stuff more – life, people, social situations, jokes, irony.

She’d always had empathy, shared nicely, been considerate and thoughtful – but weren’t these all the things ASD isn’t?

“I began to question the diagnosis”

I began to question the diagnosis. At an appointment with the chief paediatrician, I couldn’t help notice her quizzical look as Hayley smiled, made eye contact, chatted, laughed.

The woman shot me a look: ‘It’s almost impossible to see any traits…?’

I nodded emphatically, she offered to have Hayley re-assessed and here we are here today.

So Hayley has lost her instant explanation shield when people look at her askance, pick up on her struggles.

But on the plus side, I think she’ll keep improving with experience, especially as her confidence grows and she helps those around her to be deaf aware and more understanding of the issues involved.

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