Forgotten stories of autism

By Peggy | October 4, 2010 |

The Atlantic has a fantastic story about Donald Triplett, the first person to be diagnosed with autism. The authors, John Donvan, perhaps more famously known as an ABC Nightline correspondent and Caren Zucker, a television producer and mother of a teen with autism, got the story as part of a collection they are working on for a new book.

The story shows us how Donald became to be diagnosed, what his early life was like, how he enjoys his twilight years — golfing, as any well-heeled gentleman might spend his retirement — and how he’s living as an accepted member of his hometown, Forest, Miss.

The authors sought out an expert in adults with autism to flesh out their story — kind of a rare breed. One thing that Peter Gerhardt, developer of an adolescence-to-adulthood program at the McCarton School, said, resonated with me:

“People want to treat these adults [with autism] like little kids in big bodies. They can’t. They’re adults.”

Here, here.

“It’s having friends It’s having interesting work. It’s having something you want. It’s all the things the rest of us value, once given an opportunity.”

Posted in adults with autism, hope

Bloom falling off the yellow rose …

By Peggy | August 28, 2010 |

Texas faces an $18 billion deficit, and it is likely that some painful cuts will fall on the state’s most vulnerable — as if this state’s services for the aged and those with disabilities and special health care needs weren’t already starved for resources.

Here’s what could be lost, simply assuming the across-the-board 10 percent cut ordered by Gov. Perry:

Community Mental Health Services = $80 million
State Mental Health Hospital Services = $44 million
Children with Special Health Care Needs = $24 million
EMS Trauma = $23 million
Mental Health Crisis/Transitional Services = $10 million
Primary Care = $9 million
Immunizations = $8 million

Some of the beautiful people in Austin who remind the legislators to have a heart, and be smart, with our money, have organized a rally on the north steps of the capitol for 1 p.m. Sept. 1. For more information, call Dennis Borel or Chase Bearden at 512-478-3366 or e-mail: stoptexascuts@gmail.com.

Posted in adults with autism, hope, self-advocacy

Billy Bob’s

By Peggy | August 21, 2010 |

Last year, Michael discovered that he could get into Billy Bob’s, Fort Worth’s famous honky tonk, on Thursday nights for free.

He and Sam went together this Thursday, sort of an end-of-summer celebration. Both start classes this week. They were lucky this time, Michael reports, because the cover band kept playing. At one point, they played a family favorite, Stevie Ray Vaughan’s Texas Flood.

Sam reports that he had fun and would like to go again soon. “People always have fun at Billy Bob’s,” he said. It took a while to figure out what was going on, he said. He danced with one girl.

Michael danced with the same girl.

Posted in adults with autism, social life, What Sam says

TMTA

By Peggy | July 11, 2010 |

This is my nomination for a new text message abbreviation: too much to ask. It’s what parents do to their children all the time. (Insert teenager rolling eyes here.)

I just asked Sam to drop an overdue library book in the drive-thru drop on his way to work today, or on the way home. I’ve asked him to do this sort of thing before — drop off the water bill, catch the mail, pick up a few groceries before coming home. He’s also made his own bank deposits on the way home. But he’s totally stressed out. I don’t get it.

TMTA

Posted in adults with autism

Temple Grandin flies coach

By Peggy | July 3, 2010 |

On a Southwest Airlines flight from Amarillo to Denver recently, Sam and Dr. Grandin sat across the aisle from each other.

Michael was the only other person in our family who recognized her. Sam couldn’t make the connection between the photos and the real person. It took Michael a minute to realize why I didn’t want to stop and introduce ourselves. I have no idea whether Dr. Grandin would feel overwhelmed by strangers doing that, but Sam would.

Dr. Grandin spent the flight reading the Wall Street Journal. Sam liked looking past his sister and me to see out the window. Probably no one else on the flight noticed all the famous people on the plane.

As Sam says, “I’m a little bit famous.”

Posted in adults with autism, What Sam says

Considering neoteny

By Peggy | June 29, 2010 |
(First published 1/24/09)
Sam’s social skills have come a long, long way as a young adult. We’ve always known how bright he was. He’s matured into someone who understands the “rules” of adult life and the working world, and often sees emotions with great clarity.
Some slices of life skills we call “social skills” remain stilted. I’ve never been able to quite put my finger on it. After my parents’ 50th anniversary party – epic family gathering that it was – my mom did: “You feel about him like you would a dog.”
It’s a good thing we understand each other, because there could be a terrible subtext with that description.
I happened to be finishing up Gordon Grice’s “The Red Hourglass,” at the same time Mom and I had that conversation. In his book, Grice explores at length this concept of neoteny – the preservation of juvenile characteristics – and how the human and canine relationship could evolve because of that quality. Every domesticated animal has some degree of juvenile characteristics preserved in adulthood … it’s what makes them domesticated.
I felt pretty clueless after I googled “neoteny and autism” and found others in the blogosphere that are considering the concepts directly (neoteny.org). Of course, Temple Grandin has explored human-animal relationships and their implications for all of us.
I do, however, want to offer this to the broader conversation. If neoteny will forever characterize some of his social skill set, and that of other people with autism, that puts a responsibility on the rest of us.
Plenty of folks don’t have a clue how to interact with domesticated animals responsibly.
Yet I’m encouraged, because it’s not an unfamiliar responsibility. I don’t have to meet him more than halfway, and no one else has to either.
Posted in adults with autism, social life

For my Texas Parent-to-Parent friends

By Peggy | June 27, 2010 |

Dan Burns, Shahla Rosales and I made many promises to the friends we made through the Texas Parent-to-Parent Conference in San Marcos this weekend. Over the next several days on my blog, I’ll be rolling out some of those important links and explainers.

First, here is the link to a training module developed in the mid-1990s to help police respond more appropriately in situations that involved people with developmental disabilities.
http://www.eric.ed.gov/PDFS/ED408503.pdf
The document is quite large. If you aren’t able to download it, work backwards to the government’s URL, www.eric.ed.gov and search on “police training and developmental disabilities.”
I know the people who put this unit together and they did top notch work.
Stay tuned. More resources to come.
Posted in adults with autism

Showmanship 101

By Peggy | May 25, 2010 |

Sam competed for the first time as a Class A rider last weekend in the Equestrian State Special Olympics at the Brazos County Expo Center in Bryan, Texas. He’s been riding at the Riding Unlimited stables in Ponder since he was five.

Life with Sam teaches me something everyday, but this past weekend was full of beautiful little life lessons, similar to Robert Fulghum’s book, All I Really Need to Know I Learned in Kindergarten.

For example, a potluck becomes a team dinner when someone brings the giant bowl of ramen noodle salad.

At Saturday night’s dance, I learned from Connor Bateman that it’s good to ask everyone you can to dance with you, and to always say yes when someone asks you to dance.

From Brett May, I learned to avoid using many words when one, well-chosen word takes care of it.

From Anna McArdle, I learned that you keep turning Mr. Big around until the gate is within your reach.

And from Sam, I learned Showmanship 101 — just because everyone in your class (ages 8 to 29) might be half your age, doesn’t mean they’re half the competition.

Posted in adults with autism

Kindle for special readers

By Peggy | May 8, 2010 |

Sam is finishing his second all-online computer class this semester, Introduction to Database, a class for which he had two versions of the textbook — traditional and Kindle.

He was slow to warm to the Kindle, Amazon’s e-reader that I bought him for Christmas, but by the end of the semester, his study routine depended heavily on two key features — “text-to-speech” and “search this book.”
By the middle of the semester, he got in the habit of starting each tutorial with the Kindle reading the opening scenario and concepts to him. When he got to the working steps of the tutorial, he went back to the textbook, so he could slow the pace down.
We found that to be one of the disadvantages of the text-to-speech feature. You have to turn it off in order to navigate around the book.
[I can see why the Kindle was abandoned by some universities that were trying it out — accessibility problems and some publishers holding onto reading rights (um, publishers, let’s differentiate between that and performance rights, ok?)]
When Sam got to the end of a tutorial or unit, he used the search to hunt down passages to evaluate true/false or multiple choice questions on his quizzes. His quizzes were timed — he had an hour to answer 20 questions — so the Kindle had the potential to get him to the right spot quickly.
Occasionally a quirky search result made us wonder if a low battery affected the power of the search.
After several tutorials, the professor provided a long list of prompts that went back through three or four chapters in order to prepare for the exam. Sam has long been accustomed to using indices and glossaries, but I watched him use the Kindle to make quick work of those searches, too.
One note of caution: the reader who is spatially oriented won’t like how the search-the-book feature drops you into the middle of a passage without any sense of where you are in the book. Locations are numbered. There is nothing in the margins of the screen that specify the chapter, page number or any other context, unless you happen to fall below a heading of some kind.
Along the way, I showed him how to use other features — highlighting and annotating. Sometimes, a concept was better understood by highlighting the the topic sentence of several consecutive paragraphs.
And sometimes, I could explain a concept better than the author, so I inserted an annotation. Sam is smart, and most of the concepts are explained plainly and directly, but not always.
We writers that think we are being crystal clear with our explanations find out how sorry our directions are with readers like Sam.
For example, in the guidelines for designing a database, the first recommendation is “identify all the fields needed to produce the required information.” Translation: make a list of the fields. Next, “organize each piece of data into its smallest useful part” and “group related fields into tables.” Translation: break up any fields that can be made smaller, then sort them.
I really couldn’t translate the concept of “putting common fields in each table.” At that point we had to draw a lot of pictures and work with a lot of examples.
Which, by the way, the Kindle needs a drawing tool.
[Sam never liked writing in his books, since he always wanted to sell them back at the end of the semester. I’ve learned that computer majors and music majors experience obsolescence in their disciplines at a different pace.]
With charts, the Kindle also comes up short. The text-to-speech feature doesn’t read them. And they enlarge only one level (you have to position the cursor over them until the plus-sign appears in order to enlarge them.) If Sam hadn’t had the book, he wouldn’t have been able to complete some of the later assignments, because the book asked him to copy code in the chart.
The embedded dictionary is a powerful feature. Early in the semester, Sam needed a lot of the early vocabulary defined for him. With previous courses, he often skimmed past unknown words hoping he’d get the context eventually. I could see the point — everything is moving so fast if you spend too much time looking up words you’re scared of getting even further behind.
I don’t think professors realize how much new vocabulary they throw at their students at the beginning of the semester.
All in all, though, Sam said he’ll be looking for Kindle versions of next year’s textbooks. It was a powerful tool. He recognized it’s power when I first showed it to him, and was almost afraid of it (he called the dictionary “addictive”), so if you plan on introducing it to your special reader, go slow at first. Look for teachable moments, they’ll come.
I knew we were good when I borrowed it one morning and had to promise to have it back by that afternoon.
Posted in adults with autism, language, self-advocacy