* I would’ve (just barely) made my monthly deadline if February wasn’t such a short month!
Thanks for being here for another issue of It’s Like This. It feels a bit oblivious to write about my little life when there are massive things going on in the world. I’m worried about war and refugees and all kinds of things. And our life here is still, like this. It helps me to write about it, and if you feel inclined to read or listen, thanks.
I walk around the park near my son’s day program, forcing myself to take a little time off, instead of running errands or checking things off my “to do” list.
It’s hard to stop thinking about autism, though, and everything my 22-year-old son needs.
One word in particular is weighing on me.
Profound.
This can mean “demanding deep thought,” so that’s appropriate.
Profound also means strongly felt. All-encompassing. Deep-seated or severe.
It’s heavy, this word.
The medical journal The Lancet recently published a report on the state of autism research and clinical practice to provide recommendations for how to better serve the 78 million individuals with autism around the world.
They are calling for more targeted research and a stepped care approach to support the immediate needs of those living with autism all across this wide spectrum.
In one section of their 64-page report, they describe a subset of autistic adults who require 24/7 supervision and who have very limited language, intellectual disability, or both. They suggest the term “profound autism” to identify this population.
This description – a need for constant monitoring even as an adult, and a communication impairment that increases the risk of abuse or maltreatment – fits my son like the pizza-stained T-shirts he insists on wearing every day.
It shouldn’t surprise me that my son shows up on this page of the report. We’ve been here for a while.
But I guess I’m still getting used to it.
When someone gets diagnosed with autism at around 3 years old, there are very few indicators of their ultimate outcome – those who will still have “substantial delays” in adulthood “are not clearly distinguishable” from those who develop more typical speech or functioning levels.
The Lancet Commission stresses that it would not be appropriate to use a “profound autism” label for very young children, given the variability in the way the disability manifests in the first few years of life. But they show evidence – reviewing the admittedly few case studies available – that the majority of adults who meet the criteria for “profound autism” had settled into this category of the spectrum by their middle elementary years, around ages 8-12.
Man, does that pattern sound familiar!
That timeframe for my son, from 3rd grade through middle school, was full of struggles about his placement – in school, in the general community, and even in the “autism” world.
Inclusive schooling began to give way to more segregated classrooms. His typical peers were leaving him behind, but so were many of his autistic peers.
He lasted less than a week in an “autism” classroom at a charter school. They couldn’t accommodate his lack of language and emerging maladaptive behaviors - he didn’t have the “right kind” of autism for that class, I guess.
All of these “autism-friendly” events that were cropping up were not always welcoming to kids like mine.
Psychiatrists, even those with autism caseloads, often had nothing to offer my nonverbal child.
At conferences, we were all enamored by adults on the spectrum who spoke – verbally or in alternative ways – about their early non-verbal years and how they “made it” into independent living and colleges and careers.
Meanwhile, I was fighting with a middle school psychologist who believed there was no need to assess my son’s academic progress because he was headed for a future in a “sheltered workshop” anyway.
Now, that guy was a jerk. Not to mention he didn’t know the world had moved on and there was this thing called home and community based services.
But my son’s autism was shifting into something all-encompassing by that age.
It’s no coincidence that I started writing publicly about my kid during this transition. I kept trying to explain to myself and to others just what this “autism” life was about.
Because it’s certainly not the autism of the quirky mathematicians or socially awkward scholars you see on TV or in movies.
Since the Lancet report came out, some advocacy groups have been profiling individuals in a #ThisIsProfoundAutism campaign to help the outside world understand what autism looks like on this side of the spectrum.
There is a lot of variation, even within this population, due to add-on medical and neurological conditions, from gut issues to epilepsy. And like my son, the level of care needed often depends on the day, the situation, the access to proper services.
But I can see my son clearly in these profiles of “profound autism” – individuals who are sometimes joyful and often hurting, who can be charming and are resilient, who have unique interests that are both endearing and exasperating to their families, and who have profound 24/7 needs.
My son has a beautiful, bright grin and an infectious laugh, an incredible visual memory, and a way of drumming complicated beats on his belly and chest that is quite danceable.
And, he has struggled with self-injury and meltdowns, can become trapped by his own obsessive rigidity, needs support to learn basic daily living skills, and cannot describe his pain.
He spends much of his time spinning his beads and pacing, alone in his thoughts.
But when I take him to his day program, he waves his hand at the ground and mumbles “Bye, mom” as soon as we walk into the courtyard. I do not have a role in his routine here and I am expected to leave quickly.
He climbs the stairs by himself and soon I hear him open the door to the activity room.
His peers greet him with shouts of camaraderie like he’s a regular at a bar.
We have a community here, and that’s a very good thing.
I head to the park nearby to walk, read, and recharge.
I have a lot of deep thinking to do.
The Lancet Commission’s report: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/fulltext
The Autism Science Foundation’s profiles of Profound Autism: https://www.facebook.com/hashtag/thisisprofoundautism