Monday, 12 February 2018

Autism diagnosis is a Way Forward not a "way out"

I have seen a lot of frustrated responses from parents of autistic kids to recent national newspaper articles suggesting there is "over-diagnosis" of autism these days, that a diagnosis is a "way out" for middle-class parents from "taking responsibility for their own failings", that they see the autism "label" as a "badge of honour".


As I see it, a diagnosis is a "way forward". A signpost to getting the right information to understand and help a child, and access to support networks (generally charity-funded or just other parents).

Historically ASD, and other forms of neuro-diversity, have been chronically Under-diagnosed with sometimes significant consequences - there are recent studies showing strong links between undiagnosed ASD and a range of mental illnesses, depression, alcoholism, drug abuse, and consequent suicide rates.

There is a high incidence - currently - of middle-aged adult diagnoses, which for many concerned is often described as something akin to finally being given the picture for the jigsaw puzzle instead of just a box full of the pieces.

As for "responsibility". Fuck. Me. Carrie Grant's blog mentions the daily micro-adjustments required to manage a child with autism. That's true, but also understates the situation of many. Many parents are constantly *on their knees* with fatigue, desperation and despair, often with zero support from traditional family/other networks.

Right now, we're feeling ok. *I* say OK, but I'm not at the sharp end. Mrs T gets that. She's the one at home today with half-term resonsibilities... etc.

Noah is generally settled right now. He is attending school. The major meltdowns are currently not daily. But everything remains "a process". Things take time. A lot of time. And patience. Major meltdowns are avoided by those micro adjustments, that patience, that time. The diagnosis has been central for us as parents gradually retraining ourselves, our outlook. Far from avoiding responsibilities, a diagnosis is helping us meet them.

(Oh, and btw, by "major meltdown" I include things like spending up to a couple of hours shouting, screaming, crying, punching, making holes in walls, throwing dining room chairs at parents, writing rude words in marker pen on bedroom walls and ceiling, jumping up and down on a bedroom floor so hard that debris falls from the ceiling into the room below... I could go on... both parents have bruises - physical and mental, generally all the time - to prove it.)

It feels hard work right now, but it's been far worse. We also know other parents whose kids were doing ok at primary school but are now so full of anxiety and issues (at school) that they're struggling to attend ... At. All... Not just days, but often months and years not at school.

So when someone says parents are wearing an autism diagnosis as a badge of honour, they need to take a long hard look at themselves and the prejudice and misconceptions that inform that viewpoint. Sure parents celebrate their kids' strengths, often a result of that neuro- diversity, and why shouldn't they?

Autism isn't the badge of honour, it's the unique abilities, sensitivities and character of a child. Any child. All children.

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