My son Jonny is nearly 18, and as manly, muscular, facial-haired, and handsome as they come. But while he looks every inch a mature dude on the outside, he in many ways remains a toddler on the inside and among his countless profound deficits, cannot use the bathroom on his own. That means his caregiver, usually me, must accompany him. Not only that, when I need to use the restroom myself, he needs to stay with me, as it's too risky to leave him alone.
So, what's an autism mom to do? I have basically two choices: bring a strapping young man into the women's room or this middle-aged lady sulks into the men's room. I've opted for the former, but it's not always been easy. The sight of a mini-linebacker-sized man like Jonny in the ladies' toilette zone can startle many a female hardly expecting such an encounter.
For example, the other day after our hike I took Jonny to Whole Foods in Cupertino for a smoothie. After exiting the handicap stall in the restroom with him (he was fully clothed of course), a woman in line literally jumped and covered her daughter's eyes, while giving me the evil look I know too well. I could have explained the situation and said, "Sorry, I know he looks normal but he has this devastating idiopathic neurodevelopmental abnormality that people label as autism, actually his sister has it too now that we're talking about it, probably caused by tiny glitches in my eggs, but the bottom line is he can't use the bathroom by himself, or really be left alone by himself, because his IQ is maybe 30 and he can too easily get into trouble, and it's uncomfortable for me to use the men's room because of the urinal situation, and at least here all bodily functions take place behind closed partititions, yada yada yada."
But I didn't. I let it slide. We autism parents could spend hours each day justifying our actions to others. But it's a waste of our time and we shouldn't have to. Our fellow countrymen have long been on notice that autism rates are surging, now affecting about 1 in 68 young people. So when bathroom-goers spot a manly man accompanied by a woman in the women's room or a female accompanied by a man in the men's room, the first impulse should not be "yikes," but instead "oh, it's probably someone, maybe someone with autism, who just needs some extra help."
Clearly the ADA requires that our disabled charges be allowed reasonable use of bathroom facilities, but this is not just about the law, it's about social acceptance and making life easier for autism families. What do you think? What's the best way for us to face the autism bathroom dilemma?
Now, off for another hike (and post-hike bathroom run)....
Jill Escher is president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, a housing provider to adults with autism and developmental disabilities, and the mother of two children with nonverbal forms of autism.