My son is 15. He is also an autistic boy with Down syndrome.

David Perry:

Tech is just a tool or a plaything for him like any other. But we were promised more than that — we were promised a future in which technology would mediate between my disabled son and an ableist world. Instead, what is available to my son is driven more by arbitrary systems than by his needs and his personality. 

My son’s most significant needs relate to speech. By the time he was three, it was clear he was not going to predominantly use verbal speech, though he was learning to communicate in a wide variety of ways. His speech therapist at the time quickly sent us to a world-class facility to assess the best way for him to use tech to talk. At the time, Nico’s healthcare and education costs were covered by the “early intervention” programs in Illinois — statewide systems funded by federal, state, and local dollars intended to help children under three years of age meet “developmental milestones.” 

We tried a wide variety of devices, but because he had the manual dexterity to operate the simplest one, that’s the one the state would pay for. Within a few weeks after having it prescribed, we had a plastic box where you could literally cut and paste pieces of paper with words and pictures on it, and then use your voice to record sounds that then my son could press to play out loud. It was over a foot long. It cost over $3,000. 

There were much better, and much more expensive, dedicated speech devices on the market, many of which are in fact a marvel of engineering, and do not require exhausted parents to do arts and crafts. But what we needed, we thought, was a speech app; they were just becoming available on mobile platforms like iPads. We wanted Proloquo2go, one of a number of programs that can reproduce words or phrases by selecting from an infinitely customizable menu. It cost $250, which we didn’t have, and needed to be on an iPad, which we also couldn’t afford. The price would have been much lower than our state-funded arts and crafts box, but at the time the system wouldn’t pay for medical programs on non-medical devices. We ultimately got both the tablet and the app thanks to a donor.