When I started building Pollexy for Calvin in 2016, it seemed like a no-brainer. People with autism love consistent routine–it’s safe and comforting. Software is black and white, true or false. So what a perfect marriage–the unwavering daily routine of autism managed by the unbiased, unemotional, never-frustrated computer. I could not have been more wrong
Typically without autism, our brain wires communicate two ways.
One of my favorite places on Reddit is r/cableporn, which features photos of beautifully-wrapped, color-coded bundles of cable. It doesn’t mean that there aren’t any communication problems, but at least we can clearly identify the path from point A and point B.
Autism cuts the wires.
Now let’s take those same wires and slice through them with a hacksaw. Let’s say that there are one million wires.
And rather than systematically testing each wire to see where it should connect, let’s randomly connect wires back together. Oh, oh–and to make it even more fun, let’s use Scotch tape to reconnect the wires and do it while wearing a blindfold.
So now we have one million re-connected wires, but randomly connected back together and flimsily attached by Scotch tape. Where does this leave us?
- Some wires may work because we just happened to randomly connect the right wires
- Many wires will be connected to the wrong place
- A few wires will slip out of the Scotch tape and accidentally touch other wires
- We’ll always be tinkering with the wires trying to figure out which ones are connected properly and which ones are not
- Just when we’re sure a wire is properly connected, it may slip out of the Scotch tape and touch another wire
So why does this make it difficult to write software for people with autism?
Autism is predictably unpredictable, and differently the same every day.
If you find that a confusing statement, then it worked. People with autism are constantly shifting and changing while maintaining a seeming baseline routine. There are some behaviors and likes/hates that don’t ever seem to change, while other behaviors and obsessions disappear and reappear–sometimes daily, sometimes between months or even years.
So as much as I would love to write a software program to help Calvin today stop obsessing over the bathroom sink, tomorrow the bathroom sink wire may fall out of the Scotch tape and connect to a different wire that makes him compulsively open the freezer every five minutes.
Easy-to-use complex software is hard–oh so very hard.
Because autism is constantly both changing and staying the same, this means that caretaker software must be both very complex while being easily adaptable and changeable to any situation. And that is very challenging. The easiest software you love to use probably took many years to evolve to that level of simplicity.
When you think that the average caretaker spouse/partner spends 40+ hours per week caring for their loved one, where is the time to log in to the software and make changes? Where is the energy to map out new behaviors and specifically figure out how to adapt the software to the recent changes? To be blunt, how does someone manage this who is not technical or not educated or not literate or lives in or below the poverty level?
Over half of caregivers in the US make less than $50,000/year, and one-third of caregivers have a high school education or less. Providing technology solutions for caretakers cannot be limited to the wealthy and educated elite. I have very strong opinions and ideas about this which I’ll elaborate in an upcoming series, but for now, complex and complicated software is a necessary starting point. We can start with a hand crank but we must be ever-evolving to a push button.