adults with autism
Other deadly encounters: police and people with autism
When Sam was 14, he enjoyed hopping on his bike and pedaling around the neighborhood. We knew he didn’t go far, maybe a mile or so, and back then our country road was quiet. We appreciated that he had found his way to explore the world. We thought that was important for his growth and development, so we tried to keep our worries in check.
He went out on his own one day when Mark and I had gone somewhere on an errand. When we returned, we were surprised to see a police car parked in front of our garage. In no time, Mark was in between the officer and Sam, who was pacing in the back of the garage, talking to himself, as the officer stood in the doorway trying to question him.
My heart was pounding. I could only stand there and watch. The officer left shortly after we arrived, but I knew Sam was in trouble.
It took some time to piece the story together.
Sam had pedaled down a new street, where a handful of large new houses were being built. He saw that many of the windows had been broken in one of the houses under construction at the end of the cul-de-sac. He got off his bike and walked up to take a closer look just as the officer was making his rounds. Sam scrambled back on his bike and rode home as fast as he could, with the officer chasing him in his car.
According to the officer, Sam was repeating the phrase, “Yep, it looks like I did it,” as he was pacing in the garage.
The officer wanted Sam to submit to a footprint, but we refused. The officer already had him at the scene. Our further cooperation wasn’t going to help Sam. We knew it was out of character for Sam to throw rocks at windows, but we couldn’t be completely sure. And we knew, too, that most every parent has probably insisted to police that their child “would never do that,” when, in fact, they had done whatever it was they were in trouble for.
As communities all around the nation, from New York City to Ferguson to Los Angeles, demand more from their relationships with their local police, I can’t help but think that in another city or another time, the outcome of that chase would have been totally different for Sam.
I was grateful that our local police didn’t overreact, but I couldn’t leave the situation as it was.
About five years before that drama in the driveway, just after we moved to Texas, I was horrified to read about Michael Clement, a teen with autism who had been killed by Plano police. His parents traveled to Michigan for their older daughter’s college graduation and hired a caregiver to take him from school to home. When the caregiver took him to a group home where she worked instead, Michael got upset. The staff at the home lost control of the situation and called police, who were even less prepared to deal with an upset young man with autism. According to court records, the officers were in the house just 19 seconds before killing Michael, who was suspected to have been holding a knife when he came out of the kitchen.
After I read the story, I shared it with a good friend, the late Don Louis, who worked as a grant writer and project developer at the University of North Texas in what was then the School of Community Service. Don convened a group of experts, and facilitated several fact-gathering conversations that included Michael’s parents, Pauline and Warren Clement, eventually developing a training module for police.
It was well received, including being approved by the state for the official police training curriculum, although for their continuing education.
I asked Don to get me a copy of the training manual to take to the police chief. I called my good friend, Judy Martin, who had a son with autism, too, and we asked for a meeting with him. Judy and I reminded the chief that our boys were just the first of a wave of youngsters with autism that would soon be teenagers and likely to have encounters with police as they aged. I was happy that the chief came prepared for our meeting and was receptive to the materials.
I knew that wasn’t necessarily the end of Sam’s trouble, with an open investigation into that vandalism and him at the scene, but I was glad we made the overture.
About a month later, I happened to be sitting in a town council meeting when the chief updated the council on the department’s activities. It turned out a group of boys from another nearby neighborhood had been caught vandalizing and they confessed to breaking the windows of the home where Sam had been.
As he made the announcement, he looked over his shoulder and gave me a knowing glance. That night, I told Mark and Sam that he was finally in the clear.
The situation traumatized him, though. We made a concerted effort for him to trust police again. It helped that the officer who had chased him down the driveway was often on school grounds and he reached out and talked to Sam.
But he still gets nervous when he sees an officer. And he never rode bike again.
Overheard in the Wolfe House #283
Peggy: You work today, right?
Sam: Yes, 4 p.m. to 10 p.m. Back on schedule again.
Peggy (noting the long string of days off): It was almost as if they forgot you.
Sam: Yes. But you can’t forget them.
Overheard in the Wolfe House #279
Peggy: How was your day today?
Sam: Eye appointment was good.
Peggy: Wonderful. So how was horseback riding today?
Sam (pauses): The eye appointment was better.
See Sam Drive: Lost in mid-cities
If I ever doubted that no good deed goes unpunished, the lesson was reinforced today.
Michael had a job interview and asked to borrow the truck, since the air conditioning is out in his car.
(This is February, you say. This is Texas, I tell you.)
So out of his routine was he, that when he returned to the truck after the interview, he realized he locked the key inside. He called to ask whether there was a hide-a-key.
(No, son, a hide-a-key is something parents make their kids do with their own car.)
He didn’t want to pay for a locksmith if Sam could come with a spare. There was time. Sam loaded directions in the GPS on his phone and headed out.
Sam is not a fan of I-35. E or W. He took State Highway 114 and headed south on Precinct Line Road to where Michael was, in North Richland Hills. That was probably a mistake. Maybe U.S. Highway 377 would have been better. He got lost somewhere in Keller — so lost that he pulled over and called police to get help. They came and gave him directions.
Sam made it to the parking lot where Michael was waiting and the two of them were supposed to follow each other to I-820, where they would part ways at I-35W.
I thought all was well and then Michael called me again.
“I lost him,” he said.
Every parent of a child with autism knows this terror. And now his brother was learning it, too. Michael recounted as much of the situation as he could, starting with the moment he realized Sam was heading down State Highway 183 the wrong way, and I was at a loss of what to suggest next.
Sam had turned his phone off to save battery life. That worried us both. Not only was he not communicating with us, we knew “Siri” wasn’t giving him directions home.
“Call the police. Make a report,” I told him. “We can’t do this. We need the village.”
A co-worker (one of several that talked me off the ledge today) offered to take me home and Shahla provided a bit of support via text. Meanwhile, Michael was making a report with the police. I so hoped that Sam would be parked in the driveway when I got home, but he wasn’t.
I put an alert on Facebook and started to regroup. I would take Michael’s car and meet him and the police in North Richland Hills where they were making a missing persons report. (Because Sam has autism, it would have gone out immediately.)
And then Sam came down the driveway. I called Michael. The police shredded the missing persons report Michael had just signed.
Sam’s car parked in the barn formerly known as a garage
It took awhile for the emotions to settle and the conversation to begin. Sam knew he had separated from Michael and had been going the wrong way down the highway. But he remembered the directions Michael gave and when he was sure things weren’t looking right, he turned around and went the other way. He stopped at a medical center to get directions, too, and then he headed home.
(So, Tim Ruggiero, not only pizza places, but also medical centers are good places to get directions, we learned today.)
We gave ourselves a list of things to do, like Michael joining AAA, and Sam putting GPS in his car with a “home” button, and me putting a hide-a-key on the truck, so that all our good deeds trying to help each other out don’t get so punishing.
And, a big shout-out to all of the mid-cities’ finest. You got to know autism today and you did well.
Overheard in the Wolfe House #262
Sam: Mom, I’m very relieved to be home.
Peggy: I’m relieved to have you home.
[No hug; END scene]
To work
When Sam graduated high school and got his first job sacking groceries for customers at Albertsons, a dear friend and knowledgeable researcher told me that he would grow up a lot from the experience. He was right. The things you need to grow and be successful on the job, even just organizing your life in a reliable way, are quite demanding.
Sam grew up a lot that first year, thanks to the world of work.
He’s on the cusp of another job search, one that we hope will stick a little better than we’ve been able to do on our own since he graduated from North Central Texas College in December 2012 with his associate’s degree. He’s qualified for the same kind of help that helped him land that first job.
I cannot underscore how important these programs are. Researchers at Vanderbilt and the University of Wisconsin-Madison agree that underemployment is a common among adults with autism like Sam and programs are needed to address the problem. How big? About half of adults with autism — a growing population — spend their days in segregated settings of work, or other activities, with contact with the rest of the community.
Which isn’t good for the community, either, by the way.
What else did those researchers find? Here you go:
More independent work environments may lead to reductions in autism symptoms and improve daily living in adults with the disorder, according to a new study released in the Journal of Autism and Developmental Disorders.
Researchers at Vanderbilt University and the University of Wisconsin-Madison examined 153 adults with autism and found that greater vocational independence and engagement led to improvements in core features of autism, other problem behaviors and ability to take care of oneself.
“We found that if you put the person with autism in a more independent vocational placement, this led to measurable improvements in their behaviors and daily living skills overall,” said lead author Julie Lounds Taylor, Ph.D., assistant professor of Pediatrics and Special Education and Vanderbilt Kennedy Center investigator. “One core value in the disability community and at the Vanderbilt Kennedy Center is placing people with disabilities in the most inclusive environments possible. In addition, this study gives us evidence that increasing the level of independence in an employment or vocational setting can lead to improvements in autism symptoms and other associated behaviors.”
Participants averaged 30 years of age and were part of a larger longitudinal study on adolescents and adults with autism. Data were collected at two time points separated by 5.5 years.
Taylor, in collaboration with colleagues at the University of Wisconsin-Madison, looked at such autism symptoms as restricted interests, repetitive behaviors, communication impairments and difficulties with social interactions and found the degree of independence in vocational activities was uniquely related to subsequent changes in autism symptoms, other problem behaviors and activities of daily living.
The results provide preliminary evidence that employment may be therapeutic in the development of adults with autism. Similar to typically developing adults, vocational activities may serve as a mechanism for providing cognitive and social stimulations and enhance well-being and quality of life.
Excellence on horseback and that 10,000 hours expert thing
Sam competed again in Chisholm Challenge this year, and he earned another belt buckle for his English equitation ride, his sixth in about 10 years.
I started thinking about Malcolm Gladwell’s book, Outliers, and this concept of how long it takes to become an expert at a thing.
Sam looks like an expert on horseback to me. See for yourself (brother Michael is the videographer):
Michael says that when Terry Evans interviewed Sam and him for this piece in the Fort Worth Star-Telegram, Evans was surprised that we didn’t own a horse even though we lived in Argyle. (Dude, it’s Aubrey where the horses outnumber the human population, but I digress.)
But I thought, I should count up the hours he’s been riding. Maybe he comes close to that magic number in Gladwell’s book at one hour per week, and about 40 weeks per year, over 21 years …
840 hours – not even in the ballpark and couldn’t even get close in 40 more years of riding. But I’m sure he’ll have a blast trying.
Fifty shades of attention
Sometimes the best conversations you have with your kids are in the car on the way somewhere, or while you’re working on something together. I don’t understand why it worked, but we’d get revelations from Michael as we did fence repairs for the goats, for example, or from Paige after we’d get going on sewing project together.
Only in the past few weeks did I come to realize that wasn’t really the case for Sam.
Of course, when he was little, and we discovered that giving him our full attention managed to coax more language and social development out of him, we gave it our all. Mark even took a square tabletop off its pedestal leg and put foot-high 2x2s under all four corners for a play table. We spent hours sitting at that play table with him. Sometimes, it became just like a family dinner table in Japan. We cleared off the toys and sandpaper letter cards and other learning materials and ate our meal there (usually in front of a baseball game, we weren’t saints.)
As Sam grew and his language and schooling caught up, there was much less direct time like that together. We chatted at the dinner table, in the car, just like we did with his brother and sister.
In recent years, though, we noticed that Sam often had false starts to his sentences. Paige mentioned her concerns that she might have to wait for him to start and re-start a sentence as much as four or five times until he could finish it.
I wondered if I needed to find a speech therapist to help him. Sam and I talked about it briefly, and he was amenable. He had speech therapy throughout elementary, middle and high school. We didn’t seek it after that. But I told myself, add it to the list, but not at the top. We’ve got bigger fish to fry (and that’s not a metaphor: we’ve been working on cooking and kitchen management this year.)
While reading a new book on mindfulness, Thich Nhat Hanh’s Peace is Every Step, I had a quiet revelation. (Reading it as part of my work with Shahla Ala’i-Rosales and our new book on mindful parenting for those who have children with autism) What if I gave Sam my full attention when he started a sentence with me? Would that diminish the false starts?
That meant if he started talking to me while I was filling the dishwasher, for example, I was going to have to stop in the middle of my work, not just keep talking and working at the same time. I’ve been in single mom mode for nearly six years now. I recognized this would be training for me, not for him.
I got plenty of reinforcement for the change right away. The false starts diminished almost immediately. I told Michael about it and he was excited for us. He may even take data on my attention and Sam’s sentence starts next time he’s home, if it isn’t completely gone by then.
Shahla told me it makes sense. Many of us have learned that we can carry on a conversation with another person while they are doing something else. But Sam and others with autism may be less sure of the social cues. They may question whether they are communicating. They may think they are making a mistake, Shahla says.
Oh, no. That mistake was mine.
Two things
Two amazing things happened with Sam this week. I’m sure that, to Sam, they are not amazing, they are just living and being. But for me, who knows how far he’s come, and for other parents and caregivers out there who know what minor miracles look like for a person with autism here ya go …
First, I helped Sam navigate another application for work at the Target Distribution Center in Denton. He filled it out himself, but he hit a wall when they asked for his GPA, and he realized that, as a graduate, he couldn’t access that information as readily as before. I helped him brainstorm other places he could find that information and he found it on a copy of a degree audit he’d kept. Sometimes the questions in the online application weren’t clear and I translated for him. When he was done, he told me that since I’d helped him, he needed to return the favor. He put custom ringtones on my phone, which now sounds like birds and frogs, and confuse the cat, which is fun on so many levels.
Reciprocity.
Then, Sam was out with friends having dinner at Chili’s Wednesday when he saw a game on the Ziosk on the table that he recognized as one built by the clients at nonPareil Institute, where he interned. He took a photo of the game while he was there at the table, posted it on Facebook and tagged one of the institute’s directors.
Higher-order thinking (and in a social context).
Two big, gold stars this week.
Autism, cooking and inference
Like most parents of a child with a disability, I’m on way too many email lists. Sometimes I get the itch to get off a bunch of them. After all, my child isn’t a child, he’s a grown man. The kinds of things we worry about, the world is just beginning to worry about. Many times I’m convinced the answer to our problem isn’t going to be in that mountain. Just like when he was little, when he was 1 in 15,000, and not 1 in 88, my job is to ready the pilgrimage and go find Mohammed.
But then something flies across cyberspace and there it is. A solution.
This time the reward for sifting through the mountain of email was finding out about Penny Gill, and how she teaches adults with autism how to cook.
When I was younger, combing through some of the recipes my mother used, I would sometimes get frustrated with the instructions. A lot was inferred, little was written.
Inference is a difficult skill to master for people with autism.
Julia Child came along and helped with instructions for how to cook, but she and all those television chefs expect us to generalize what they do. Generalizing is also a difficult skill for people with autism to master.
Can you imagine writing the recipe that really has ALL the steps? Well, Penny Gill and her team have been doing just that. Check out the directions how to make Bumbleberry Squares.
They have a cooking class coming up in the middle of the day, May 7 at Central Market in Dallas (scroll down to find the registration instructions). That’s a rotten time for us in the Wolfe family.
But we ordered the cookbook, Coach in the Kitchen.
Stay tuned.