It is easy for us as autism parents to be complacent and assume “things always work out.” They don’t.
by Cristina Moretto
During a lunchtime run along the Bay Trail in Foster City, I came across a white van in one of the trailhead parking lots. The driver stepped out, opened the rear door as he lit a cigarette, and out came five severely developmentally disabled adults. I stopped running because I wanted to see what would happen next. What happened next was, well, nothing. The driver smoked his cigarette and the five passengers meandered aimlessly around the parking lot. I saw no engagement between the driver and his charges. While I can’t say what happened after I resumed my run, my sense was that wandering around the parking lot was a large part of the “outing.”
Because my 20 year-old son Justin, who is severely affected by autism, has slightly less than two years left in the school system, I am in the process of finding him an appropriate adult day program. Due to the scarce number of viable options, my mind sometimes conjures a Dickensian nightmare of neglect, with attendees left to rock on the floor in dirty clothing, or at least something like what I glimpsed during my run: just-killing-time style babysitting.
While there are great programs for high-needs adults like Justin, they have waiting lists, sometimes many years long. It’s not that the other day programs are operated by bad people, but the current climate makes it extremely difficult, if not next to impossible, to provide sufficient staff and stimulating curriculum appropriate for the clients.
Day programs are subject to shrinking federal and state funding that fail to keep up with actual costs. Staff is generally paid little more than minimum wage for difficult, and what should be considered skilled, work. I made more money as an unskilled college student working in retail 25 years ago. As a result, it is very difficult to draw people who would be excellent candidates into working with this vulnerable and special population.
If things don’t change, the situation will only get worse, with increasingly crowded conditions, lower staff ratios and substandard facilities. The direct result could resemble the Dickensian scene to which I alluded. Given the increase in autism cases aging out of school, It appears this image is not so terribly far-fetched. The Association of Regional Center Agencies did not call our system “On the Brink of Collapse” for nothing.
It is easy for us as autism parents to be complacent and assume “things always work out.” They don’t. Adult autism programs don’t just magically happen. We need to find more ways to fund essential human services like housing and programs for adults with severe developmental disabilities, instead of, for instance, forking out obscene amounts for a border wall. This means increasing awareness about the staggering numbers and the adult autism crisis; activism to reform old policies; or boots-on-the-ground actions to create more opportunities for these very needy young adults. As with any political or systemic change, it will require action from those willing to band together to make the difference.
During a lunchtime run along the Bay Trail in Foster City, I came across a white van in one of the trailhead parking lots. The driver stepped out, opened the rear door as he lit a cigarette, and out came five severely developmentally disabled adults. I stopped running because I wanted to see what would happen next. What happened next was, well, nothing. The driver smoked his cigarette and the five passengers meandered aimlessly around the parking lot. I saw no engagement between the driver and his charges. While I can’t say what happened after I resumed my run, my sense was that wandering around the parking lot was a large part of the “outing.”
Because my 20 year-old son Justin, who is severely affected by autism, has slightly less than two years left in the school system, I am in the process of finding him an appropriate adult day program. Due to the scarce number of viable options, my mind sometimes conjures a Dickensian nightmare of neglect, with attendees left to rock on the floor in dirty clothing, or at least something like what I glimpsed during my run: just-killing-time style babysitting.
While there are great programs for high-needs adults like Justin, they have waiting lists, sometimes many years long. It’s not that the other day programs are operated by bad people, but the current climate makes it extremely difficult, if not next to impossible, to provide sufficient staff and stimulating curriculum appropriate for the clients.
Day programs are subject to shrinking federal and state funding that fail to keep up with actual costs. Staff is generally paid little more than minimum wage for difficult, and what should be considered skilled, work. I made more money as an unskilled college student working in retail 25 years ago. As a result, it is very difficult to draw people who would be excellent candidates into working with this vulnerable and special population.
If things don’t change, the situation will only get worse, with increasingly crowded conditions, lower staff ratios and substandard facilities. The direct result could resemble the Dickensian scene to which I alluded. Given the increase in autism cases aging out of school, It appears this image is not so terribly far-fetched. The Association of Regional Center Agencies did not call our system “On the Brink of Collapse” for nothing.
It is easy for us as autism parents to be complacent and assume “things always work out.” They don’t. Adult autism programs don’t just magically happen. We need to find more ways to fund essential human services like housing and programs for adults with severe developmental disabilities, instead of, for instance, forking out obscene amounts for a border wall. This means increasing awareness about the staggering numbers and the adult autism crisis; activism to reform old policies; or boots-on-the-ground actions to create more opportunities for these very needy young adults. As with any political or systemic change, it will require action from those willing to band together to make the difference.
"Adult autism programs don’t just magically happen. It will require action from those willing to band together to make the difference."
I want the next two years to drag by slowly to delay this big unknown of the day program, and hopefully I will be able to find a program in which Justin will thrive. Schools have more oversight and funding than adult programs—that is just a fact. Our jobs as parents becomes tremendously more difficult at age 22. We all want our grown children to have engaged, happy, safe and meaningful days but know they often cannot speak up to let us know when something isn’t right. Extra effort and precaution can mean the difference between thriving and neglect.
We can leverage the wisdom of crowds. The question is how.
For each of us as individuals, it is a monumental and daunting task. However, we can leverage the phenomenon of crowd wisdom. As Scott Page, a professor at the University of Michigan, states, “To borrow a phrase from Walt Whitman, crowds typically ‘contain multitudes’: their members have diverse predictive models. Even where no one in the crowd gets the right answer, when the answers are aggregated, a more accurate answer emerges.”
Our autism parent crowd contains multitudes—we are devoted to our children, and we are wise. And yes, we are wiser together. I invite your thoughts about how the autism parent community can join hands to find the answers we need.
Cristina Moretto is a member of the board of Autism Society San Francisco Bay Area. She works on the peninsula and lives in the East Bay with her son Justin.
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