Autism and Disclosure: Is Virginia's 'Autism' ID Card Ethical?

Kathie Snow, a disability rights advocate, brought to my attention a recent news item about Senate Bill 367 in Virginia. The bill would require an optional bar code on driver's licenses and identification cards that can be scanned to reveal if a person has autism. The bill was introduced by Senator Donald McEachin, who is quoted as saying that police and first responders need additional tools in order to discern if a given individual, in McEachin's unfortunate parlance, "has this malady."

While the concept may be altruistic, both Ms. Snow and I were perplexed by what essentially amounts to "outing" the neurodiversity of others. Autism is not a medical condition that would require immediate knowledge of a person's status in an emergency such as diabetes, for example. (And the term "malady" is off-putting to autism self-advocates.) That aside, the bar code raises legal issues that conflict with the Americans with Disabilities Act as scanning the card would also reveal an individual's diagnosis to potential employers and others. At the heart of the ID card issue, however, is disclosure. Decisions are being made by people who do not have autism without direct input from the very individuals whom they propose to support.

It may be very challenging for parents, caregivers, educators and others to fully understand what it is to endure the autistic experience. Because most people with autism are intensely sensitive beings, we should never underestimate the potential for others' remarks to cause undue humiliation and embarrassment. Many caregivers are unaware that their words may be perceived this way; and none of us who are caring and committed willfully wishes to cause hurt feelings.

Our society wrongly condones as acceptable our speaking openly and freely about the most intimate details of another person's physical, mental, behavioral, and educational being. We're most likely to do this with children, the elderly and people with different ways of being. Too often, a person's "behaviors" are discussed at length on their behalf and without permission. Such conversations frequently occur in the presence of the individual, be it a child or adult. Usually the persons being discussed are without a voice or equal say. While caregivers believe they are being helpful, a regrettable breach of trust has occurred.

The next time you feel entitled or obligated to disclose information about someone with a "different way of being in the world," whether that person is in your presence or not, please ask yourself:

1. Do I have prior permission from the individual to do so?
2. Is what I'm about to share gentle, respectful, private or even necessary?
3. Would I be willing to say the exact same thing about myself in exactly the same forum--or have others say it about me without my prior consent and without a way to defend myself?
4. Is there a more discreet manner in which to share the information, such as texting or emailing sensitive information to vocational, educational, medical or school personnel?

The Virginia Institute of Autism has taken a proactive position in their statement on Bill 367: "It should be a personal choice for the individual to opt-in to having a notification on their driver's license." The Institute trains law enforcement and first responders to understand the signs and symptoms of autism, which is an appropriate educational approach. I am well aware of instances in which law enforcement has used unnecessary and undue force on individuals with autism who may outwardly appear to be disregarding an officer's requests or otherwise appear under the influence. But instead of mandating a breach of disclosure for those who have autism (and who are capable enough to drive a vehicle), let's invite those very individuals into a meaningful dialogue to gain their perspective on the circumstances. Such a respectful partnership could yield some beneficial insights as well as dismantle myths about autism as a malady.

CORRECTION: An earlier version of this post stated, "The bill would require a bar code on driver's licenses and identification cards that can be scanned to reveal if a person has autism." In fact, the bar code would be optional. The post has been updated accordingly.