Our son Michael, now 19, navigates the world with profound autism and total blindness. His journey has been one of silent resilience, as he is nonverbal and perceives the world in ways most of us cannot fathom. Our family's experiences have shed light on the glaring gaps in our systems, particularly when it comes to accommodating special behavioral needs.
A recent episode stands as a testament to this: As Michael approached the age of 18 and legal adulthood, we learned that obtaining a state ID would streamline our application for services and legal guardianship. The rationale was clear, but the process was far from it. Ideally, we should have been able to prepare all the necessary paperwork in advance, provide a photograph of Michael, and briefly visit the Registry of Motor Vehicles (RMV ) for identity verification. However, what unfolded was a distressing narrative of inflexibility and insensitivity.
The RMV required Michael to endure the standard procedure: waiting in line, attempting to sign documents he couldn't see or comprehend, and sitting for a photograph in an alien environment. Despite explaining (a few times) Michael's complete blindness, the employee there insisted he "look" at the camera (the blue light above it), and even tried waving a colorful pen to capture his attention and to get the photo in the angle they wanted. These attempts just got him upset and aggressive.
After a harrowing experience, we did secure the ID, but at a significant emotional cost. The photo on Michael's ID, far from flattering, resembles a criminal mug shot, capturing none of his true, joyful essence. It is a stark contrast to the many beautiful, smiling photos we have of him that reflect his bubbly personality. It pained us to see him so unhappy and distressed, and it took considerable time to soothe him afterward.
This experience wasn't just challenging (and draining) but a stark reminder of how our systems fail individuals like Michael. There was so much accommodation that could have been made for Michael and others like him. For those with even more severe behavioral issues, such procedures can escalate into even more dangerous situations. This isn't an isolated incident but a reflection of a broader issue: a lack of understanding and accommodation for individuals with profound autism. It doesn’t have to be this way.
This ID, a critical piece of his identification, fails to show the true Michael – a vibrant, spirited individual. It's as if the state is unable to perceive and acknowledge his real identity. This photo, now in the RMV system, will also be used for other state identification cards, like his handicap placard which is due to be renewed soon. It will be with us until we venture in for another disappointing encounter resulting in what probably will be another mug shot photo.
As a mother and advocate, I hope our community leaders can consider the realities of families like ours. Autism is not a monolith; it presents uniquely in each individual. What we ask for is not preferential treatment, but rather the flexibility to make essential services accessible to all. If our policies can evolve to embrace this understanding, we can alleviate unnecessary hardships and truly honor the dignity of every individual affected by autism.
This is more than a call for change; it is a plea for empathy and action. Let's work together to create a world where Michael and countless others are seen, understood, and supported in their unique journeys.
-Shiri A., Michael's mom