Genetic testing

Not really sure where I stand on genetic tests for all at birth, but making tests more widely available when parents present seeking help would, I’m sure, be of great benefit.

I got my diagnosis at 26, nearly twenty years ago, by which time I had fully imbibed the narrative I was just really lazy, and there was nothing more to it.

I would hope that nowadays there would be appropriate interventions for each manifestation of the condition, whether cognitive delays or physical difference.

A diagnosis would help healthcare and education professionals design interventions as a continuum, rather than isolated packages, each requiring a new round of referrals and investigations. 

Basically, it sits on your GP record, so that whenever a parent seeks help with another manifestation of the condition, they can say, “Aha, this is expected. Let’s get him sorted.”

Optimistic, granted, but anything would be better than the situation faced by my generation, which was basically just to say, “There’s nothing wrong with him. He’s just lazy. Get over it.”

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