The Home · The Work

Why I’m Passionate About the Print-Disabled

Or…Why I Moved To Staten Island

Bernardo’s daughter G is autistic. That’s the first thing to know about her – even before you find out she’s nearly 20, that she likes to bike and ski, that she’s good with numbers. You find that out because she doesn’t talk.

She has other eccentric behaviors that vary as she moves through various sources of self-calming or stimulation. But G’s speech went away between the ages of 2 and 3. Only when the iPad came out did she regain it. She has a program called ProLoQuo 2 Go, and she can type her heart’s desires and direct the iPad to speak them out loud. Mostly these revolve around food. For the last couple of months, G has had a macaroni and cheese obsession.

G’s school, Eden II, is on Staten Island as is a supplementary program called On Your Mark. So there’s a big autism community out here – both children and adults. On Your Mark has a cafe just around the corner from us, which is staffed and run by autistic adults; on Tuesday and Thursday nights the adults in the OYM residences come to the cafe for dessert, and we try to join them then.

Parental support is a must, and parents of people with autism find themselves bonding quickly. So many of our friends are essentially in the same boat – they have a couple of kids and one is autistic. We try to do things together – ice skating, bike riding, skiing – and pitch in for one another. Autism, for the parents, is exhausting. That’s why we live out here – there are more of us to help one another.

One of the hallmarks of autism is processing disorders. I suspect that G doesn’t hear spoken words in the same way neurotypical folks do. She doesn’t process reading text the same way either. So having both together – having the audio along with the print – is critical for her to understand a book. Most of the time we resolve this by reading out loud to her. But it’s my dearest wish to see her immersed in a book on her own. For her to have that independence – to select the book, sit down with it, and lose herself in it – it’s something we take for granted. But it’s something that eludes her.

There are books that have text-to-speech enabled, but they are few and far between. I can’t wait until publishers see the light on this – it’s very different than audiobook functionality. TTS can be sped up, slowed down, adjusted – more publishers need to sit in demonstrations and find out what the capabilities are. Rather than cannibalizing the audiobook market, enabling this functionality in ebooks would actually open up a market where previously none existed.



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