Just One of the Guys
I am sitting next to my mostly non-speaking 26-year-old son in chairs facing the pharmacy window, waiting for our vaccination appointment. A man walks toward the counter and hesitates when he sees us. He asks my son if we are in line.
As I respond, “No, go ahead,” to the question not addressed to me, my brain splits between annoyance at this default habit of men to speak to other men first, and pride that my son is seen as just a regular dude.
Help Wanted: Mind Reader
Last night, my son seemed to be asking for help finding a song or a video he wanted to play on his iPad. He mumbled some part of a lyric, maybe, but I couldn’t piece it together.
He repeated the same unintelligible phrase over and over. I asked him to slow down, to type it, to spell it, to give me another clue. He couldn’t. I think he had a clip of a song in his mind that was more rhythm than words. I suggested what it might be, so his request shifted to what I said, but that wasn’t it.
He ramped up into panic mode. We looked at search histories, we tried other favorites. His body tensed. He clenched his teeth and my wrist. He asked me to leave. He called me back. His eyes were wide with desperation. I could see him willing himself not to hurt me in his frustration.
It’s just a song, right? This seems like an overblown reaction to a minor problem. But it’s another tiny hit in his daily struggle to be heard. It is horrible to not be able to tell someone what you need.
I understand why he insists on his routines, the same schedule, same clothes, same food, same arrangement of everything. It feels safer if things don’t change. The boringness is better than the stress of trying something new, of unfamiliar vocabulary, of remembering how to ask for that new thing again, of trusting someone to figure out what you’re asking. It’s safer if you’re asking for things they expect you to want.
We feel it, too. We are risk-averse, more often aiming to help him stay within the unchanging known. But of course, nothing is permanent. Schedules shift, technology fails, grocers stop carrying that one brand you’ll eat.
I’m reminded, again, to slow down and stay present, to pay attention to what he is hearing and seeing. It’s the only way I’ll get better at reading his mind.
Makes Perfect Sense
When he was younger, my son learned a few words in sign language. He still uses some on occasion, along with his spoken words, with a few variations from the traditional signs. In ASL, “please” is an open hand rubbed in a clockwise motion on your chest. My kid completes the circular motion, but rubs his belly—a wholly appropriate adjustment, since most of the time he is using “please” to request food.
Respect
When my son’s new primary care doctor enters the treatment room, she says hello to me but then directs her initial questions to my son. He says, “Hi” but otherwise doesn’t respond. Before she turns to me, she asks my son, “Would you like me to ask my questions to you or to your mom?”
I appreciate the respect she’s offering. It reminds me to always give him a chance to respond, even though 100% of the time, I will be the one speaking for him on anything that requires a detailed response.
But I am also glad she worded her question in the way she did, since I knew he would probably reply as he usually does to an unfamiliar question—by echoing her last few words. He copied her gesture pointing to me and repeated “to your mom.”
Oh, good. We’re all in agreement then. It would’ve been a challenging appointment otherwise.
24/7
In the past 25 years (the whole of my son’s lifetime), there have been remarkably positive changes in autism awareness and understanding. It has been good to see that many are willing to provide accommodations for sensory sensitivities and communication barriers, that disability overall is becoming less stigmatized (our current administration’s ignorance notwithstanding).
But even though everyone now seems to have autism (or at least knows someone who does), it feels more challenging to explain exactly what autism is in our household.
Hat tip to The New York Times podcast (gift link) for their reporting on “The Autism Diagnosis Problem” and the complications of lumping everyone across the spectrum into a single diagnosis.
My son’s particular flavor of autism is what some researchers are calling “Profound.” I talked about my reaction to the original Lancet Report here:
The Lancet Report defines autistic individuals in this “Profound” subset as “having either minimal or no ability to speak or an I.Q. of less than 50, or both, and requiring 24-hour access to a caregiver.”
I feel my son’s need for “24-hour access” in my bones. This level of care and supervision is not fully understood by the general public, or even within the widening autism community.
But I also believe everyone across the autism spectrum deserves support, as does everyone with a disability, a mental illness, or a human body.
You know, we wouldn’t really need all of these distinct labels – the ones that help us secure access to appropriate education, housing, employment, and health services – if we just prioritized care. For everyone.
P.S. And, his smile this morning was even before we found (I think) the song he was looking for last night. He was saying (I think), “fifteen there’s still time” from this song (which we both love, I’ve learned!):
Hey, hey!
My husband started a new YouTube channel to take us along on his storage auction adventures. I’m his (newbie) video editor, so take a look and let me know what you think! Please subscribe, too, and share!
And, one more thing…
I’m also writing the newsletter for Atticus Books & Music – come find us at Atticus House of Quirk – and support your local indie bookstore!
I always appreciate it when people talk to the guys I support for work even when I am the one who will inevitably answer for them. That level of respect and understanding goes a long way.
A great essay Robin. I loved what you said at the end about care. :)