“Is THIS how we dress for a job interview?” asks the vocational counselor–we’ll call her Carolyn–as Jim comes in for his monthly update. Halfway to sitting, Jim freezes, widens his eyes at her in disbelief. He sinks slowly into the chair, and I see all his portals closing. It’s like watching Iron Man stick out his arm and call for his metal suit. Titanium shields are snapping into place all over Jim’s body, covering the vulnerable soft parts within.
This interview is not going to go well.
He’s frustrated anyway, Jim is. He had a great job assessment period–he stocked shelves for a week at a small, family-owned grocery store. He had a support coach and clearly defined tasks, and, when something was too overwhelming, people would adjust it. By the end of the second day, he settled in. He was even, when that week came to a close, helping customers locate items they couldn’t find.
In that warm, supportive atmosphere, he shone. People told him the shelves looked better than they ever had—organized, neat, all labels facing the right way. Jim took great pride in that, and the energy from that good experience fueled him to look for a job with a coach from the same organization that supported the one week experience.
He is paired with a coach I’ll call Tammy.
The first week, Tammy meets with Jim at the appointed time. She picks him up at 10 AM on Monday morning, and they go to the library. It’s a holiday, though, and government offices and libraries are all closed; they have no luck at Job and Family Services, either. She drops him off with encouraging words and they plan to meet the next week.
He is up the next Monday and ready at 10, but Tammy texts to say she has to meet with someone else, and changes their meeting till mid-afternoon. But that’s okay; Jim can be flexible. They meet later, go to the library, fill out some apps.
Jim is optimistic.
He is looking for a stocking job, doing the same kind of work he’d done at the little supermarket. Tammy has him fill out an app for a bank teller. Jim tells us this later, when we are cleaning up after dinner. Mark and I look at each other over Jim’s back while he is putting dishes in the dishwasher. Our looks are mirrors: Uh-oh, we reflect.
Dealing with money, dealing with crowds–not Jim’s strong points. But he seems enthused, so we keep our parental traps shut.
Jim notes, too, that Tammy mentioned a lot of the jobs available are temporary and seasonal, and her organization can’t support folks in those.
The next week Tammy has a sick kid and cancels. Following that, her Monday is booked so she switches the meeting to Tuesday. Jim is not sure if she means morning or afternoon. He gets ready and waits. She arrives at 2:00; she tells him most of the jobs available are part-time, which he doesn’t want.
He has filled out six or seven apps. He has gotten several canned ‘no thank you’ responses. He is getting discouraged and confused. Which brings him to the monthly meeting with Tammy and Carolyn, a casual check-in kind of thing.
Jim showers the night before and washes his hair. That morning, he shaves, brushes his teeth, and uses deodorant. These are grooming tasks he has schooled himself to learn; he takes pride in being clean and neat. He puts on his jeans and a clean T-shirt. He pulls on his soft, worn green jacket, and I pick him up to go to the meeting.
Where Carolyn starts out by asking that job interview/how do we dress question.
Jim spends the entire meeting time with his eyes closed, rocking, shaking his head, saying, “I just want to stock shelves at a supermarket.”
A younger friend sent me an email not long ago about her nine-year-old daughter, a brilliant girl with high-functioning autism, who has been doing well in her small rural school system. Last year, the team–parents, teachers, therapist,–worked out some stress relievers. The girl has manipulatives–stress balls, stretchy ropes, that kind of thing—that she can work with when the tempo and tenor of a school day become overwhelming. She was assigned an aide, and her therapist worked with the school to set up an approach for her special style of learning.
The girl had a great year; she loves to learn, and with the structure in place, she settled in and contributed and thrived. She had friends and she did her work and it was, altogether, a growing and learning year for her and those she touched just by being there.
This year, despite the written plan, the therapist input, and the legal document if the IEP, the new teacher has decided the child doesn’t need those ‘stretchy toys.’ It’s not fair, she says, that one kid has them and the rest do not. So, when stress surfaces, there’s no way for the girl to cope except to melt down.
The teacher says she just needs to learn to deal with it. And despite the advice of experts, despite documentation and legal backbone, my friend knows she is going to spend this year pushing for the simple, implementable necessities her autistic daughter needs to function effectively in her every day setting.
It was working so well until someone decided the routine had to change.
There are a couple of things going on here, and the first one is a real lack of in-depth understanding of what autism is, and how autistic individuals perceive the world. I am no autism expert, but I know my son. I imagine his experience, from what he tells me, as a total lack of filters, so that if he’s sitting in the middle of a conversation and a radio is playing in the background while noisy street traffic zooms back and forth, there’s no way to discount one noise and concentrate on another. They all enter with equal weight. Which one does he listen to? How does he turn the others down?
Everything is exaggerated in that way–sights and tastes, things that touch the skin. Very common, it is, for autists to seek out clothes that don’t bind or rub–T-shirts (labels removed) and sweatpants, white socks, forgiving shoes like old sneakers. The challenges of daily grooming–rote for neurotypicals–includes feelings and tastes that conspire to overwhelm.
And a whole unscheduled day looms like a threatening cypher. Well, that’s what I think. I’m reporting from the outskirts, looking in.
So what helps?
Routine helps, a lot,–just knowing what to expect. (Those missed or changed appointments can loom large.) Searching out appropriate clothes for all occasions is mandatory– finding things that can be worn without discomfort but that aren’t completely out of place. Sensory aids can help, and I think many autists find or develop these for themselves. Jim, for instance, types his stories while watching a movie on the half screen of his laptop, sitting in front of the television with an episode of a favorite show playing. I couldn’t concentrate in those circumstances, but he’s focused, and his fingers fly. Somehow, he has used the distractions to defuse the distractions.
It’s a fascinating journey. What we don’t know about the autistic mind is legion. And so we have teachers and job coaches who struggle.
Autists look pretty ordinary, often. They can carry on a conversation; they can seem entirely abled. So when they say, Nope, can’t do that–worse, when they implode when asked to do that, people working with them are shocked and annoyed.
Well, they say, he’s just going to have to suck it up and deal.
What they see is a sullen, uncooperative individual who CHOOSES not to comply. What is true is that the autistic individual is overwhelmed and can’t proceed.
The other thing, maybe the more disturbing one, is an unacknowledged lack of respect for a person with a disability.
As in–it’s okay to talk down to them, to ask them questions in condescending tones.
“Is THAT how we dress for a job interview?” asked Jim’s vocational counselor. (When we got to the car, Jim said, “I think that Carolyn was pretty rude.” He was right.)
“Why can’t you just grow up?” my friend’s daughter’s teacher demanded of the nine-year-old.
(As if it’s going to help to raise one’s voice and let it drip sarcasm. But it’s hard–it really is: it’s hard to work with people who think differently, act differently, react differently. Education–and openness to learning–is key.)
As in–a person with disabilities has plenty of time, so you can play with it any old way you like. Jim goes to monthly meetings with a wonderful therapist at a community-based organization. When he leaves, the ladies at the counter–nice ladies, who know his name and chat with him–give him an appointment card.
Last month, we drove to the meeting place at 2:00, the time on the card. When we got there, the young woman at the counter–a new person–told Jim his appointment wasn’t until 3:00.
“Uhhhhhh…okay,” he said. He’d stopped in the middle of a writing project to get ready for a 2:00 appointment. But the boy never looks at his messages; maybe, I thought, they texted or called him and he just missed it. So we took a spin over to the coffee shop, caffeined up, had a nosh and a chat, and went back. While he was in with the counselor, I showed the receptionist the card, and asked if maybe we’d missed a call.
She looked puzzled. No, she said, no one called him.
I pushed the card toward her. I pointed out gently, that he’d arrived at 2:00 for a 2:00 appointment, and been told to come back later.
She looked at the card without much interest. “I guess someone made a mistake,” she said glibly.
Disgruntled, I went back to sink into my book while Jim worked with his therapist. Just before the half hour, the door swung open and a mother, obviously frazzled, came in with her two daughters. One of the girls was on crutches. The other was cranky and sniping. Clearly worried about being late, the mom rushed to the counter to check in.
The receptionist told her the appointment had been moved till the next day.
The mother looked at the limping, sniping daughters, and she just stopped for a moment, with her mouth half open. I could imagine her pondering all that she’d had to do to get those teenagers through that door by 3:30. She swung slowly back to the counter.
“Someone TRIED to call you this morning,” the receptionist said. The mother took her new appointment card and left.
(I do want to tell you that the young lady wasn’t at the desk when we went in this month. A temp, maybe, which could explain the lack of connection.)
Once I took a tour of a mental health facility where clients met us at checkpoints and talked about their experiences. At an activity room, a nervous young artist showed us his paintings, which were pretty darned incredible. He read to us from a big index card, his voice shaking, his breathing shallow, rushing through. But at the end, he looked up and he said, “Painting is what I do. It’s my job, and,” he took a deep, ragged breath, “it’s a REAL job.”
The things that people with disabilities, mental health issues, recovery challenges, engage in–the activities that busy their hands and free their souls–are real and important. Their time should not be considered limitless or unimportant because their days are structured differently from ours.
Oh, there’s so much we don’t know.
I read a novel set in post World War I Louisiana this week. In one scene, there’s a Klan meeting, and the hooded speaker–whom the townsfolk recognize by his unique, whiny voice,–goes on and on about the twenty per cent of the population who are ‘idiots and lunatics.’ He outlines a plan to rid the population of such drags within twenty years. And some of the listeners pause and think about it. It’s a chilling scene. How, I wonder, could people have been so ignorant?
But I wonder, too, one hundred years from now, how we’ll be judged on our treatment of autistic folks, people with mental illness, those with traumatic brain injuries. We DO have a long ways to go.
But we can only start where we are, and we are at a threshold, I think. It’s a hazy place, but we’re poised on the tip of opportunity. We have the opportunity to learn, to share, to document, and to challenge. Those of us with loved ones who are not neuro-typical have a responsibility to help the people who provide services expand their understanding.
Today I found some wonderful on-line resources for people working to help autistic adults find employment. I hesitated a moment–sometimes being THAT mother does not endear a service provider to my grown-up child–but then I pasted it into the body of an email, wrote a nice note, and hit ‘send’ to Carolyn and Tammy. They’re busy people who don’t have time to do internet research; their jobs are demanding, their paperwork requirements stiff.
I believe they got into the field because a small voice inside spoke to their caring. They are not trying to be harsh or mean or unhelpful.
So I sent them the links. And maybe I can help Jim to be more ready for next month’s meeting. Maybe we can come up with some creative job ideas, and help these good-hearted, thinly-stretched people imagine and implement a whole new plan. As more children are diagnosed with autism and other neuro-differences, it is going to be important for horizons to broaden, perceptions to expand.
Maybe we can contribute to an environment where the Iron Man suit never has to snap on. I know we have to try.