Let’s Take the Nuances of Autism into Consideration

Gina and Aunt Nancy

By Nancy Colasurdo

I’m at my mother’s house on Holy Saturday, hanging out with family. When I casually put my arm on the back of the couch while sitting next to my niece, Gina, she turns to kiss my hand. Later, she takes my other hand and asks for a “tickle.”

This means, run your fingertips down her forearm or make a fist and lightly run that over her wrist. She smiles. It gives her great joy. And if she had her way, this would be an hours-long activity. Soon she goes back to watching Bubble Guppies Halloween on her iPad.

Gina is a 21-year-old on the severe end of the autism spectrum. You know, one of the ones Health Secretary Robert F. Kennedy Jr. was talking about in a much-noted and criticized speech recently. I was struck – soothed, really – by the words of Jill Escher, president of the National Council on Severe Autism.

“Yes, Kennedy did overgeneralize when saying kids with autism will ‘never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted,’” Escher writes in an article called What RFK Jr. Gets Right -- and Wrong -- About Autism in Tablet Magazine. “But while his words understandably ruffled feathers, they reflected at least partial reality for a great many, including my own two adult children with nonverbal profound autism.”

Oh yes, they did.

Gina will not hold a job. Gina will not pay taxes. Gina will never be independent.

On Easter morning, I assisted my niece with her shower. She soaped up, lollygagged, lost focus, and got back to it when I prompted her. When she attempted to step out of the shower stall, ostensibly finished, with one soapy leg, I coaxed her back in to rinse it. She got back in, but then washed off the wrong leg.

My sister – Gina’s mother -- does this every day, I thought. The reason I was doing it this time was because my mother and I had given my sister and brother-in-law a rare overnight break. They went to a casino and had a nice dinner.

Meanwhile, Gina and I colored eggs, had pizza, and took a pleasant walk through my mother’s retirement community. We chatted throughout, but that requires speaking Gina’s language, where past, present and future tenses are tossed out the window. She loves to review gatherings she’s attended – who was there, what we ate, what she wore. It could be 10 years ago or 10 days ago. She never tires of it. Baby’s christening, jumpsuit, so-and-so was at our table. Amazing.

While certainly it would be helpful to know what caused Gina to be on the autism spectrum at this level, I’ve been called an ableist several times in my attempts to have the conversation. Inevitably you get to a place where people are triggered by the idea that caring for these humans can be challenging. For the record, I’ve never heard Gina’s parents call her a burden. Not once.

But are you telling me that living with the knowledge they will be gone someday and their special needs child will be navigating this world alone is not a burden to bear? What are you, a robot?

I am delighted by so many of the autism stories I see on TV and in print media. They represent triumph of spirit and true joy at what perseverance and attention can bring to a high-functioning person on the autism spectrum. In many cases, it’s about having proper advocacy and aligning with the right resources. Jobs, college degrees, relationships and more become a reality they thought might never happen for their child.

My family’s questions fall more in this realm: Do enough facilities exist to keep Gina healthy and engaged? Will she get lost in a crowd of others needing assistance? Does someone know how to handle her if she acts out? Will she be cared for? Loved? How will she cope if all of us die before her? Who will advocate for her?

Another common occurrence with autism families is that friends fall away, so not only is this a stark reality, it often occurs in a silo.

Gina is a glowing, sweet human being. She can articulate that she’s angry, but struggles to drill down on it when asked why. Her mind spins, making her anxious about upcoming events, even ones she’s looking forward to sometimes. Like many on the spectrum, she’s repetitive. The same question, over and over. It gives her comfort to hear the same answer.

If you lay out the day’s events for her and then deviate from them, oh boy. Told her we’re having pizza for dinner, but then changed to Chinese food? She will literally still be asking when she can have pizza while she’s enjoying her wonton soup. No kidding.

Setting expectations is a big deal in the world of these special humans.

I’m not an RFK Jr. fan. I don’t think he has any business holding a cabinet position in our government. His misogyny disturbs me to my core. His willingness to bow to the current president sickens me.

But I’d feel much better if we saved our criticism for his untruths. The aforementioned article by Jill Escher gets into the weeds on this better than I ever could: Is Kennedy right to call autism an epidemic? Yes. Is the increase in the United States due to the broadening of diagnostic concepts? Hard no and he’s right to reject it. Do the research questions RFK Jr. mentioned make any sense? No. “While he’s right to say ‘external factors’ should be a focus, there’s no reason to believe that ‘environmental toxins’ are playing much of a role -- not mold, food additives, pesticides, air, water, or ultrasounds … But the idea of ‘toxins’ being a meaningful driver of risk is not backed by two decades of environmental epidemiology, nor does it make sense biologically.”

There’s so much more Escher delves into. I pride myself on keeping up with this complicated topic, but I felt this was a much-needed refresher and beyond.

For Gina and so many like her, may we find peace in some answers.