Autism

Dignity and a Token Will Get You on the Subway

In defense of autism: parents that disclose lives in crisis.

Posted Jul 18, 2018

On Sunday, the Australian version of 60 Minutes aired a segment about the Whelans–a family of six that includes parents Liz and Sean and their four children, including 12-year-old Max, who is severely autistic. Max is prone to outbursts that are so violent and unpredictable the family has split, with Liz taking her three other children to a new home while Sean remains back with Max. The parents hope to create an environment that will give Max the structure and support he needs by turning the original family house into a care facility; Sean’s sisters created a GoFundMe page to raise money for this purpose, since the Australian government seems to provide little support.

Before the night was over, Australian autism groups criticized 60 Minutes–particularly for showing disturbing footage of Max attacking his mother. The organization Amaze demanded, “The media need to have greater respect for autistic people’s dignity when reporting about autism, and also not perpetuate common myths about autism.”

Let’s set aside for a moment the obvious response that the episode clearly demonstrates that violence associated with autism is not a myth–not for the Whelans, and not for the families of the 53 percent of autistic kids that exhibit aggressive behavior, according to a 2012 study. I was more struck by Amaze’s reliance on dignity, rather than more tangible harms.

What is dignity, anyway? Is there anything more amorphous? The term’s diverse use in a range of contexts, from law to medicine to philosophy, has led bioethicist Ruth Macklin and others to dismiss it as “hopelessly vague” (in an editorial even more bluntly titled, “Dignity is a Useless Concept”). For example, when we talk about “death with dignity,” we are typically speaking about autonomy, the right of a dying person to make important end-of-life decisions–which is clearly not the meaning Amaze has in mind. Nor is it relying on the classic Kantian definition of “absolute inner worth,” which is generally used in human rights discourse (even though, since Kant believed that dignity only attached to rational actors, he likely wouldn’t have applied it to someone as cognitively impaired as Max).

Rather, it seems the synonym that most closely matches Amaze’s intention is privacy–an issue that comes up every time parents publicly describe the dangerous and devastating behaviors of their autistic children, and about which I’ve written before. It’s curious to me that Amaze didn’t simply use that word. Perhaps it’s because parents have the right to waive their children’s privacy, and there is no doubting the intentions of parents so devoted they would rather separate their family than institutionalize their son. Or perhaps it’s because there are no obvious negative consequences that might arise from violating Max’s privacy, whereas there are many potential positive ones: Raising more money for Max’s care (which did in fact happen; the GoFundMe page shows donations exceeding the original goal by more than $15,000); shaming the Australian government into providing therapeutic, educational and medical support; letting other families in similar situations know they are not alone.

Perhaps dignity sounds important enough to dwarf these critical advantages. However, as the philosopher Peter Singer said (and with whom I agree about little else), “Philosophers frequently introduce ideas of dignity, respect, and worth at the point at which other reasons appear to be lacking, but this is hardly good enough. Fine phrases are the last resource of those who have run out of arguments.”

Simply put, the tragedy in this case is that the Whelans are living in crisis, not that they talked about it to the media. The years of silent suffering preceding the 60 Minutes episode didn’t stop Max’s aggression, they only led to heartbreaking and unimaginable rupture. The only humane response is our emphatic commitment to ensure that families like theirs get the resources they so desperately need.