A Death in the Night, and Pause for Thought

This morning I arrived work to a disturbing piece of news.  “A pedestrian got killed by a car last night in . . . .”  Our complex is home to a fleet of emergency ambulances and we hear lots of things, but deaths still stand out.

“She used to live at the State School,” and “I remember seeing her cross the street with her cat on a leash.  Inside a cat carrier box.  Just pulling it along behind her.”   “She would just walk out in front of cars, and I guess one finally got her.” Later, comments following a newspaper article would describe her as eccentric, and “Our town’s most famous pedestrian.”

I perked my ears up at that, because the Belchertown State School was where teachers threatened to send me, forty years earlier, when I failed to meet their behavioral expectations.  The State School was a nasty place, a school in name only; a nasty warehouse for autistic and intellectually disabled people. 

That reflection and the news story made me wonder . . . was the person who was killed autistic?  I have no idea, but the way her story was presented gave me pause for thought. When a young autistic person is hit by a car, parents furnish the headlines, which usually read something like this:  “Autistic teen killed by car in terrible accident.”  The danger of wandering is often cited.

When researchers gather statistics on wandering deaths they look for headlines like that, and tally them up.  But what happens to the autistic people who get old, and have no parents to tell their story when they step in front of traffic?   People in the community shake their heads, and remember their eccentricity.  Some remember the institution where they used to live.  The headlines are noncommittal; “Pedestrian killed in late night crash.”

The cause could be anything.  

That story made me realize two things:

The role of autism and developmental difference in deaths of adults with disabilities is almost certainly significantly underreported when older people don’t have parents or others to present that part of the story.  Children "die from wandering."  Older people are just one more casualty, "hit by a car."

Parents who are concerned that their autistic child will walk in front of a car someday are right to be worried about what may happen when they are gone.  Many of us remain oblivious to cars and other dangers our whole lives, and for some, life is cut short as a result. Yet our freedom is precious, and not likely taken away or constrained, even when it leads us into danger.

Wandering presents the autism community with a difficult moral dilemma.  Autistic advocates argue that the “wandering” some parents call out is really an effort to satisfy curiosity or escape a stressful situation.  While that is surely true some of the time, what if the person’s escape takes them into the path of an oncoming car?

We’ve discussed this more than once at IACC, without seeing any good solutions.  Tracking devices don’t prevent people from falling in water or dying in roadways.  Locks present a whole host of problems as a type of restraint.  Supervision sounds like a good answer, but very expensive and frankly impractical on a 24/7 basis.

At some point, most cognitively disabled people are either left unsupervised in the community, or they end up in a group home, jail or some other form of institutionalization.  Many die early from accident or neglect.  And of those deaths, the contribution of cognitive disability to the premature mortality (for whatever reason) surely often goes overlooked.

In the case that caught my eye, the headline simply said, “Woman struck and killed by car.”

Would you – as a reader – have felt different if the headline had said, Intellectually disabled woman . . ., or, Autistic woman . . .?    

I think the addition of either of those words would have implied a connection between cognitive disability and the death.  They would give readers pause for thought, and perhaps make people think that some of the folks wandering the streets are more vulnerable to unwittingly step in front of a car than others.

But who would add the words?  The sad truth is, many cognitively disabled people live lonely lives, and at the end, there may be no one to tell our story.

I believe we have a duty to protect the vulnerable members of our society.  At the same time, I understand the feelings of those who say we should not have a duty to protect against stupidity.  It’s a matter of context.  People rightly object when our Coast Guard spends thousands to rescue drunken boaters.  The rescue of children and cognitively disabled people is a very different story because they do not “know better,” and often cannot help themselves.

If you agree with me, give some thought to the question.   Where do you think people with cognitive disabilities should live as adults?  If you agree the community is best, how might we protect people while still respecting free choice and self determination?  Can we, and should we even try?  Does the protection we extend to children just run out at some point in adulthood?

These are difficult ethical questions and they don’t have easy answers.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick. 


jonathan said…
Interesting that you never mentioned Belcherton in "look me in the eye" as well as the special education you state you received. Your teachers would not be able to unilaterally send you there, only have recommended such to your parents. Some of the therapists and special educators my parents dealt with in the sixties recommended I be sent away some place (residential school) thankfully my parents did not take their recommendation. It is the same reaction for adults as children. The woman in question was clearly challenged if she lived in a residential facility like that.

I'm not satisfied that tracking devices have been satisfactorily tried. If Avonte's law had passed congress, we might be seeing significantly fewer deaths from drowning or being hit by a car of developmentally disabled people. The neurodiversity movement you support has crusaded against all of these things that could help parents protect their seriously DD kids from tragic deaths, though admittedly, nothing is going to present these deaths 100% until the unlikely event of a cure happening soon.
Unknown said…
I nearly didn't survive my wandering childhood, I was indeed often oblivious and did a lot of dangerous things.

I spent time in a "hospital/school". I had severe depression at the time, and their solution to my depression was not to treat depression, but to try to fix me. Treating me as a failed version of "normal". All of my problems would magically vanish if I could just satisfy what they expected of me. This just made things worse, it was when my suicidal ideations began.

There were a few dangerous environments, and I would find myself lingering in dangerous spots, hoping for a release from that environment. But it backfired on me, as they just assumed I was oblivious, so they stepped up the efforts. Thankfully my parents pulled me out of their when they realized I was declining.

The one thing I never see discussed in wandering deaths or drownings is the possibility of suicide to escape a similar psychological environment. For me being diagnosed as a child simply meant being treated that way my entire life, having no value because I was not "Fixed" enough. Even when it came from my most well intentioned doctors, it was devastating and they didn't have the slightest clue that it was.

The problem I continue to see is that Autistic psychology is scarcely even recognized and therefor neglected. A suicide is treated as just a tragic "trait of Autism" and can't possibly be anything else despite all the lessons we've learned from treating other minorities this way. The focus always remains on the physical, yet even the most physically "fit" successful famous person can be brought down by the psychological.

The point I'm getting at it, is that suicide can not be ruled out when it comes to an environment like that, be it institute or institutionalized home. You wouldn't be able to make the distinction between being oblivious and wanting to die to escape.
John Robison said…
Chris, that is a good point. We don't have any way to know how many "wandering deaths" are actually willful suicides and not accidents at all.
lurker said…
I know it's a touchy and sensitive subject in deciding which amount of safety through control or monitoring to trade for which amount of freedom of decisions and movement. I myself am sometimes unsafe due to my impairments, including with crossing streets, but though there isn't much control put over me, I basically try to stay away from a lot of settings and tasks I often can't handle. I can't help thinking that cures for such mental impairments, the pursuit of which is sadly being demonized, would make this dilemma unnecessary.
Jean said…
I have a 13 year old ASD son who could give Usain Bolt a run for his money. His safety when my husband and I are no longer able to care for him, is of huge concern to us. Ideally, I would love him to live in a home setting with constant (loving) supervision. I don't ever envisage a day when he will be able to live independently but I also live in dread of the spectre of institutions.
Institutions, quite rightly, are becoming fewer, but there doesn't appear to be any coherent plan for the future of kids like mine.
Perhaps I'll just have to do what a friend of mine plans on, which is to never die. xxx

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