117 Autistic Children and Adults Who Died Deserve Better

Opponents of Kevin and Avonte's Law are complicit in future deaths.

Posted Dec 20, 2016

Earlier this month, Congress failed to pass the bill known as “Kevin and Avonte’s Law,” which would have allocated $2 million dollars every year to fight wandering behavior in children with developmental disabilities. Agencies all over the country could have used these Department of Justice grants to distribute tracking devices, train first responders, or provide other resources to address this behavior – which affects half of all autistic children and has been responsible for over 100 known deaths (although the number is likely much higher, since reporting of these fatalities is not mandated and no federal department collects this data).

            When the Interagency Autism Coordinating Committee (IACC) asked the Centers for Disease Control (CDC) to propose a medical code for wandering in 2011, I was absolutely stunned at the response from the Autistic Self-Advocacy Network (ASAN). Although parents and self-advocates disagree on many issues, surely we could all agree that needless death is a bad thing, right? But ASAN lobbied hard against the code, arguing in a petition to the CDC “this new coding promises to label hundreds of thousands of children with ‘wandering’ diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment.” An “Action Alert” on the ASAN website claimed, “The use of the ‘wandering’ label on adults will enable abuse and restrict the civil rights of Americans with Disabilities.”

            In the five years since the code was implemented, none of these dire consequences have materialized. I haven’t seen one report even suggesting that anyone was inappropriately restrained, secluded or abused as a result of the wandering diagnosis.

            Yet ASAN’s opposition to efforts combating wandering continues. On Saturday, Vox posted an article by ASAN president Ari Ne’eman explaining why his organization opposed Kevin and Avonte’s Law. Ne’eman cites particular revisions of the bill that ASAN opposes, including eligibility criteria and funding sources, but in general his piece sets up the same specious dichotomy between, as he puts it, “parental fears about safety and self-advocates’ concerns about abuse and loss of autonomy” that characterized ASAN’s fight against the ICD code for wandering.

            ASAN has long insisted that autistic individuals that wander do so to escape from physical and sexual abuse from their parents or caregivers. While it’s true that children and adults with I/DD are vulnerable to abuse, there is absolutely no evidence that this abuse is in any way connected to wandering. Jill Smo, an autism mom and advocate who monitors wandering deaths and holds an online vigil every April for those lost, told me, “In not one of the stories that I’ve read about did the child wander as a result of any kind of abuse in the household.” Furthermore, she added, “Over the years I’ve become good friends with some of the parents in these stories. I’ve heard about their frantic searches, their panic, their unimaginable terror upon finding out what happened to their children, and I think it’s incredibly insulting to even suggest that it was because of any kind of abuse.”

            In fact, in the Vox article Ne’eman quotes statistics from a 2012 study on wandering that disprove his own abuse theory. This study reported that children’s mental state during elopement episodes was positive (“focused,” “content or happy,” “playful” and/or “exhilarated”) 83% of the time. In 17% of the incidents, parents said their kids were “anxious.” Even if the anxiety was caused by abuse in every one of these cases – which I think we can all agree is exceedingly unlikely – this still represents a very small fraction of wandering behavior.

            Philosophically, the autonomy argument is more compelling, as it raises the specter of “Big Brother” surveillance that aroused the opposition of conservative groups, like Americans for Limited Government, that have no direct connection to disability. What’s ironic is that I imagine Ari Ne’eman has a tracking device on him almost all the time. Most of us do – our cell phones. If he disappeared under urgent circumstances, the first thing the police would probably do is track his phone. That’s why ASAN’s privacy hysteria is so baseless. Not only has wandering been an official diagnosis for five years, but a range of tracking devices – from wrist and ankle bands to clip-ons or other wearables to cell phones – has been available to those parents who can afford them, with not one constitutional crisis to show for it. Kevin and Avonte’s Law would just make these purely voluntary devices accessible to a greater number of needy families, as well as fund critical training, education and other programs to combat wandering. That’s why the bill is supported by Autism Speaks, the Autism Society, the National Autism Association, the National Down Syndrome Society, and the National Center for Missing and Exploited Children, among many other organizations.

            Ne’eman is right about one thing: severely autistic individuals such as my 17-year-old son Jonah have very little autonomy. Their freedom of movement is often extremely limited. They can’t decide on a spontaneous weekend in Las Vegas. They can’t even decide to get up and go to McDonald’s or the mall.

            But this has nothing to do with tracking devices that may or may not be available. Jonah’s autonomy has been stripped by his profound intellectual and developmental disabilities, period. And that’s why the wandering debate perfectly represents the willful blindness ASAN has always had towards those on the severe end of the spectrum. Ne’eman suggests that instead of tracking devices, parents of children prone to wandering should “invest in communication supports so that autistic children can make their needs known more easily, as well as to provide additional training on safety skills. These might include accessible swimming lessons, or how to navigate a community on public transportation.”

            I’m not sure which is more ignorant: Ne’eman’s accusation that our kids wander because they are abused or his implication that we haven’t already tried every single thing imaginable to keep them safe, maximize their engagement and improve their quality of life. Autism Speaks’ National Housing and Residential Supports Survey reports that more than a third of autistic individuals require 24-hour supervision – a fraction that represents hundreds of thousands of people. This isn’t because their lazy parents haven’t taught them to independently ride the bus. It’s because of significant and irreversible impairments in safety awareness, functional communication, impulse control, and IQ – often accompanied by aggressive, self-injurious or disruptive behaviors – that require constant support. In our case, Jonah has sufficient language to ask to go to his favorite places, like Costco or Wendy’s. But the only things that stopped him from persistently sneaking out whenever our backs were turned to try and walk to one of these faraway places himself (often with no shoes, and typically right down the middle of our busy street) were the code locks we eventually fitted on all our exterior doors.

            Blocking Kevin and Avonte’s Law won’t give Jonah or any of his profoundly disabled peers one more ounce of autonomy. All it will do is allow more tragic wandering deaths. Everyone who cares about the autism community should support this bill and urge their representatives to pass it when the new Congress convenes in January.