A lot of slop and wobble

By Peggy | April 14, 2024 |

The words about to unfold below weren’t exactly how I planned to start or end this post. The house is quiet and Sam is likely napping. We just finished a Sunday bike ride down the rail trail, which felt a little like a victory lap today. On Monday, we rode the trail all the way to Lewisville Lake so we could get a good, long time with totality.


Tree branches frame an image of cumulus clouds surrounding the sun.

(That supposed life hack of holding solar glasses to your smartphone to shoot the eclipse? I stopped trying to take photos after this shot. I cherish the images in my memory. It was an unparalleled life experience–babies being born, totality, etc., etc.)

Today’s victory lap was marred by a motorist who chose the moment he passed us (we were waiting at the McKinney Street crosswalk by City Hall) to lay on his horn a good long time. A few motorists have done that to us in the past. Each time, as the adrenaline shoots through you, it feels a bit like someone punched you in the face.

Whether honking a horn like that should be considered assault may feel like an open question. Yet Sam’s reaction today, as in the past, convinces me that it is. He’s a beast of a cyclist, but after the horn, he took off like a cheetah. He was already through Quakertown Park and halfway down Congress Avenue by the time I got to the little bridge over Pecan Creek.

For the rest of the ride home, he’d pedal at incredible speeds and have to circle back to meet me before taking off again. I can’t imagine how much adrenaline is coursing through a person’s body that it takes more than two miles of fast pedaling to work it off. During one circle back, he said to me, “I’m a good person. But it doesn’t matter to him. That’s why I can’t feel safe.”

Risk is always with us. It’s hard to calculate sometimes. I borrowed today’s headline from a Washington Post story about calculating Earth’s rotation. I never doubted the math for the eclipse, which takes into account the slop and wobble of our little orbit around the sun. It was marvelous to sit on the lakeshore Monday, looking up through solar glasses to watch the eclipse start and progress and make the world go dark, just like they calculated.

A lot of modern life takes all this elegant math for granted. We need to remember that the world may speak in calculus, but life is not precise. What makes some math so elegant is that it hasn’t forgotten about all of life’s beautiful slop and wobble.

I suppose we could stop riding bike, but that’s no way to address the risk. Or we could insist that police ticket motorists for assault when they use their horns that way, but that introduces other risks.

Or, maybe I could write an essay about life’s slop and wobble, sending a little message out into the world that asks everyone to please be kind to all cyclists, because you don’t know which ones might be autistic.

Posted in adults with autism, decision-making, health, problem-solving, What Sam says

Don’t sand down a square peg and call it support

By Peggy | January 18, 2024 |

For the past several months, I’ve been reading the research on adults with autism. The work should help me prepare for the next book but, more importantly, help me do a little better in this current chapter of life.

In surveys of the research literature on adults with autism, several authors say there’s not much out there. There was even less research 20 years ago, so I’m not beating myself up for being late to this party.

When Sam was a toddler, I emptied library shelves, checking out books, looking for answers. Back then, autism research had barely exited the blame-the-mother stage and was focusing on young children. I found Maria Montessori’s original treatises and other general child development research and writings the most helpful. Over the years, I believe that concept—looking first to the big, fundamental ideas and then to the science that follows—has worked well for our family, which feels forever on the front lines.

For example, a recent study set out to create a sturdy vocational index for adults with autism. Why do we need such a thing? The researchers’ answers had a lot to do with shoring up future research and policymaking. But for the rest of us, who are watching our loved ones and their peers go after their employment and higher education goals right now, it can still help to be precise in describing current conditions and supports.

After all, the first step in solving a problem is identifying what it is.

In this particular study, the vocational index would score Sam’s work conditions and supports at the top, since he works full-time with the same support as any other warehouse employee. The index would score the work conditions and support of another young man we know just a little lower, because his work was part-time and he had additional support from a job coach.

That differentiation is a small step forward, but the rest of this young man’s story shows it also has its limits.

Like Sam, he has autism. Until recently, he was working on the retail floor at a pharmacy.

The pharmacy, which is part of a national chain, is participating in one of the state’s workforce programs. In addition, a former special education teacher served as his job coach. In the end, the job didn’t work out, and I’ll bet you, dear reader, already know why.

His family recognized something off in the support he was getting, but it wasn’t readily apparent what was wrong. After all, someone was there, someone whose job was to help him.

Ultimately, the job coach was meeting the pharmacy’s needs first, not the employee’s. The company needed workers. Joining the state’s workforce program allowed the company to tap a new pool of workers with little risk or investment on its part. And that showed.

As a former special education teacher, the job coach should know that a robust assessment of the worker’s skills and the workplace conditions comes first. Just based on our early experiences, I’ve got a pretty good idea how perfunctory that fellow’s assessment probably was. Sam’s first job placement was sacking groceries because that was all the state’s workforce program had to offer. They honestly didn’t look too hard at whether the job was a good fit.

It was clear that the pharmacy wrote up a task list long before any potential employee came through the program with their own strengths and skills to offer the store. Unsurprisingly, it can be a lot to ask some individuals with autism to respond to the shopping public. Sam says he couldn’t imagine doing it today. Some customers were already awful when he was sacking groceries years ago, and these days, there seem to be more awful customers and some just go off the rails with their complaints. So when this fellow’s job coach decided that he needed to pause the program and get some behavioral training instead, it was clear something else had gone off the rails.

This young man sometimes answers questions in long-winded ways, and some of the pharmacy staff and the customers didn’t like it. The coach didn’t either. We’ve all heard about the square peg that doesn’t fit in a round hole. We know the answer isn’t to send the peg out for sanding down, and down, and down. But that’s what was passing for job support for this fellow.

So the next question has to be, how do we measure support in the index, or how do we make sure what’s passing for support is actually support?

 

 

 

 

 

 

Posted in adults with autism, What Sam says, Writing

New year, new book?

By Peggy | December 22, 2023 |

If declaring a New Year’s resolution out loud helps you be accountable for it, I’m here for it, dear readers. About half way through the book I co-wrote with Shahla, I recognized the need for a book for parents of adults with disabilities. A book about transition.

For parents sending their grown child with a disability out into the world, the word “transition” has become the shorthand for this journey. The word is both dead-on accurate and completely wrong.

Most families start planning for transition long before a high school graduation. There is a lot to think about. What’s next—a workshop, job placement, vocational training, college? Where will they live? How can we find adult health care providers to replace the pediatric team? What other services will they need as an adult? Where will the money come from?

All these questions deserve answers, even though the resources needed to support choices and pursue dreams after high school are often different than those available in school. If those resources even exist. Many families describe transition planning as going off a cliff.

Our family’s journey felt like that sometimes. But the more I tried to think about transition as a journey, the more it felt like we could build resilience.

Sam says his New Year’s resolution this year will be building resilience. I think he understands where we are now and where he wants the path to go.

Sam and other young adults with disabilities deserve to be surrounded by people who respect and honor their agency and humanity, no matter what long-term supports they need.

The truth is, we all need support of one kind or another, especially as we age.  Some support flows readily from modern life—grocery delivery, cleaning services, public transit. Other connections can be elusive—meaningful friendships, helpful neighbors, extended family relationships. Yet we know that any community can grow stronger when each and every person makes their full contribution to its betterment. That’s where resilience comes from.

That will be the purpose of this new book, harnessing the “big ideas” families need  to make transition feel less like going off cliff and more like taking flight.

Oh, and my other resolution will be to finally learn how to make pie crust. Tips welcome.

 

 

Posted in adults with autism, What Sam says, Writing

Refrigerator Mother 2.0

By Peggy | June 17, 2021 |

Only a few generations ago, some doctors blamed mothers for their children’s autism. Psychologists wrote long theoretical papers based on their observations of mothers and their children. They concluded that autism mothers were cold and that their lack of love triggered the child’s autism.

If you stop to think about that idea for a minute, those explanations were quite a leap. And a cruel one at that.

We humans look for patterns in the world around us–it’s almost one of our super-powers. We use the information to make meaning, and create loops of ferocious thinking that make the world around us a little better.

Therefore, knowing that we’re supposed to make things better, the Refrigerator Mother explanation for autism just begs the question. How much did those early theoreticians consider and—most importantly, rule out—before concluding they’d observed a pattern of mothers who don’t love their children?

Granted, many people were immediately skeptical of these mother-blaming theories, including other professionals and autism families. The theories fell after a generation, but the damage was done to the families forced to live under that cloud as they raised their children.

And, the blame game is still out there.

The latest iteration has started in a similar way, with people seeing problematic patterns in autism treatment. Young adults with autism are finding their way in the world. Some of them had good support growing up, but the world isn’t ready for them. Some of them had inadequate support growing up, so they have an added burden as they make their way in a world that isn’t ready for them either. Some are speaking up not just about the world’s unreadiness but also about that burden. We must listen. Autistic voices can help us find new patterns and new meaning and build a better world for all of us.

We should be careful about letting one person’s experience and voice serve as the representation for the whole, because that’s how the blame game begins. Even back in the old days, when information was scarce, we had the memoirs of Temple Grandin, Sean Barron, and Donna Williams to show us how different the experiences can be. As Dr. Stephen Shore once said, if you’ve met one person with autism, then you’ve met one person with autism.

Here’s an example of how that can break down: some now argue that asking an autistic child to make eye contact, as a part of treatment service, is inherently abusive because eye contact feels bad for them. Missing from that argument is the basic context, the understanding that for humans to survive, we need to connect to one another. For most of us, eye contact is the fundamental way we begin to connect, from the very first time we hold and look at our new baby and our baby looks back at us.

I asked Sam recently (and for the first time) whether making eye contact is hard or painful for him. I told him I was especially curious now that eye contact changed for all of us after living behind face masks for a year. He said this, “Eye contact is very powerful. I wonder whether I make other people uncomfortable with eye contact.”

He’s right. It is powerful. And he just illustrated the point about one person’s perspective.

When Sam was young, we never forced him to look at us. But after a speech therapist suggested using sign language to boost his early communication, I found the sign for “pay attention” often helped us connect.

The additional movement of hands to face usually sparked him to turn his head or approach me or Mark in some way, so we were fairly sure we had his attention and that was enough to proceed with whatever was next. Over the years, we’ve shared eye contact in lots of conversations and tasks. But if not, we recognized the other ways that we were connecting and I didn’t worry about it.

All of this context—both the need to survive and the difficulty with a basic skill needed for that survival—cannot go missing from any conversation about the value of teaching an autistic child. Some people with autism do learn how to make eye contact early on and are fine with it. Some don’t. For this example, then, we can listen carefully to adults with autism and their advocates as they flag patterns from their bad experiences with learning to make eye contact and make changes. But that fundamental need to connect and share attention remains.

That’s when we also need to remember our tendency to blame others when our troubles feel intractable. Sometimes, in these fresh arguments over how autism treatment should proceed, I hear that same, tired pattern of blame I’ve heard since Sam was born. Take it from a worn-out mother who’s been blamed plenty over the years: some arguments are just another round of the same, they just come inside an elaborate wrapper of mother’s-helper blaming instead.

All the families I know truly love their children and are learning how best to respond to them. We can’t forget that parents have a responsibility to raise their child as best they can. Let’s talk, please. But please also, let’s spare the rollout of Refrigerator Mother 2.0, because it could cost us a generation of progress.

Posted in adults with autism, hope, love, problem-solving, rants, self-advocacy, Uncategorized, What Sam says