Asperger's Syndrome & Autism Spectrum Disorders

[Menolly]

A couple of timely stories for my family were shown on PBS' Need to Know last night, especially since Beorn graduated high school in June, and will soon be turning 18.

The first, Adult Autism, explains how much of the support and help those on the spectrum receive through their school years disappears when they turn 18, and how the families of more severely effected adults than Beorn struggle to find appropriate placement for their children or siblings so they can be somewhat independent when parents are no longer able to provide for them.

The second story was a follow up with Peter Bell of Autism Speaks, regarding advocacy for adults with autism. This may relate a little more to Beorn, as I do see potential challenges for him as he leaves the academic world for the private sector.

I only hope his adjustment to NCF will then ease his transition to grad school (if he goes) and his eventually settling in to a career...

[Menolly]

NPR recently aired a follow-up to the original 2006 Story Corps segment by then 12-year old Joshua Littman and his mother. You can see an animated version of the original Q&A between them.

The follow-up has not been animated yet, so it is strictly an audio version. Like Beorn, Joshua is now in his first semester of college, and like Beorn, I find him to still be very naive in many ways. Joshua's not understanding of his mother's question, "are you trying to tell me something," is just so...typical of some of the misunderstandings I've seen others have in regards to Beorn not giving or picking up on verbal "hints."

For me, it is a breath of fresh air to occasionally read or hear of others working through similar challenges.

[Fist and Faith]

For me, it is a breath of fresh air to occasionally read or hear of others working through similar challenges.

It's an amazing thing to learn we're not the only person going through X. Just knowing that helps a lot. Even better when you know someone irl, and you get to have conversations like:
"Did your kid ever ___?"
"I KNOW!!! What is with that?!?!?!!"

[Menolly]

This was published yesterday in the New York Times. I don't know how long it will be accessible online before it is archived and only available via payment, so I am quoting it here for posterity. With Beorn being 18 now, I may want to read it again at some point in the future (I hope).

December 26, 2011
Navigating Love and Autism
By AMY HARMON

GREENFIELD, Mass. — The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as “not like the other humans,” regarded Kirsten Lindsmith with undisguised tenderness.

She was the only girl to have ever asked questions about his obsessive interests — chemistry, libertarian politics, the small drone aircraft he was building in his kitchen — as though she actually cared to hear his answer. To Jack, who has a form of autism called Asperger syndrome, her mind was uncannily like his. She was also, he thought, beautiful.

So far they had only cuddled; Jack, who had dropped out of high school but was acing organic chemistry in continuing education classes, had hopes for something more. Yet when she smiled at him the next morning, her lips seeking his, he turned away.

“I don’t really like kissing,” he said.

Kirsten, 18, a college freshman, drew back. If he knew she was disappointed, he showed no sign.

On that fall day in 2009, Kirsten did not know that someone as intelligent and articulate as Jack might be unable to read the feelings of others, or gauge the impact of his words. And only later would she recognize that her own lifelong troubles — bullying by students, anger from teachers and emotional meltdowns that she felt unable to control — were clues that she, too, occupied a spot on what is known as the autism spectrum.

But she found comfort in Jack’s forthrightness. If he did not always say what she wanted to hear, she knew that whatever he did say, he meant. As he dropped her off on campus that morning, she replayed in her head the e-mail he had sent the other day, describing their brief courtship with characteristic precision.

“Is this what love is, Kirsten?” he had asked.

Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as “mindblindness” — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships. Parents and teachers have focused instead on helping them with school, friendship and, more recently, the workplace.

Yet as they reach adulthood, the overarching quest of many in this first generation to be identified with Asperger syndrome is the same as many of their nonautistic peers: to find someone to love who will love them back.

The recent recognition that their social missteps arise from a neurological condition has lifted their romantic prospects, they say, allowing them to explain behavior once attributed to rudeness or a failure of character — and to ask for help. So has the recent proliferation of Web sites and forums where self-described “Aspies,” or “Aspergians,” trade dating tips and sometimes find actual dates. Lessons learned with the advent of social skills classes and therapies, typically intended to help them get jobs, are now being applied to the more treacherous work of forging intimacy.

The months that followed Jack and Kirsten’s first night together show how daunting it can be for the mindblind to achieve the kind of mutual understanding that so often eludes even nonautistic couples. But if the tendency to fixate on a narrow area of interest is sometimes considered a drawback, it may also explain one couple’s single-minded determination to keep trying.

A Meeting

Kirsten was first introduced to Jack in the fall of 2008 by her boyfriend at the time, who jumped up from their table at Rao’s Coffee in Amherst, Mass., to greet his friend, who was dressed uncharacteristically in a suit that hung from his lean frame.

Jack, it turned out, was on his way to court. A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the Bureau of Alcohol, Tobacco, Firearms and Explosives to charge him with several counts of malicious explosion.

By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory. Kirsten’s boyfriend, a popular Amherst High senior, had offered to serve as a character witness for his former classmate, and the three spent much time together that year.

The boyfriend told Kirsten that Jack had Asperger syndrome: his condition may have blinded him to the possibility that the explosions, which he recorded and posted on YouTube, could well be viewed by law enforcement authorities as anything other than the ambitious chemistry experiments he saw them.

But if Kirsten noticed that Jack held himself stiffly, spoke with an unusual formality and rarely made eye contact, she gave little thought to his condition, other than to note that it ran in families: his father, John Elder Robison, is the author of “Look Me in the Eye,” a best-selling 2007 memoir about his own diagnosis of Asperger’s at age 39.

After reading of the intense interests that often come with the condition — the elder Mr. Robison’s passion for Land Rovers, he had written, was the basis for his successful business servicing luxury vehicles — Kirsten and her boyfriend made light: “I have Asperger’s for McDonald’s,” she would joke. But Jack was all too familiar with the book’s more sobering stories, too: about the despair his father felt in his youth as he looked at happy couples around him and his rocky marriage to Jack’s mother, which ended in divorce.

“All these young Aspergians want to know how to succeed at dating,” John Robison told his son after his speaking engagements. And as a high school girlfriend broke up with Jack over the course of that year, Jack began to wonder more urgently about the same question.

Kirsten’s two previous boyfriends had broken up with her, too, and her current boyfriend was an unlikely match — a charismatic extrovert with soulful blue eyes who thrived on meeting new people. But when she admitted at the outset of their senior year in high school that she envied his social ease, he had embraced the role of social coach.

Years of social rejection had made her, in his view, overly eager to please. “People will take advantage of you if you act that way,” he warned. “If you don’t watch out, you’ll be a natural doormat.”

Noting her tendency to speak in a monotone, he urged her to be more expressive. He sought to quiet her hand movements, gave her personal hygiene tips (“You can’t do that,” he told her flatly when she used her fingers to scoop up food she had dropped on a table at Taco Bell and ate it) and pointed out the unspoken social cues she often missed. He elbowed her as she spoke for long minutes to an acquaintance about her interest in animal physiology. “When people look away,” he explained, “it means they’re not interested.”

And sometimes, he was plainly upset by what he perceived as her rudeness. “I can’t believe you did that,” he huffed when his mother asked Kirsten how she was and she did not reciprocate.

Much of the time, Kirsten embraced the tutoring, which he punctuated with unabashed displays of affection. “I love this girl!” the boyfriend once proclaimed, tackling her on his mother’s couch. Diagnosed with attention deficit hyperactivity disorder at age 11, she never heard the word autism. They were convinced that with some effort she could become as socially adept as he was.

But she also chafed at his frequent instructions, which required constant, invisible exertion to obey. And she despaired of ever living up to his most urgent request: that she share her innermost feelings with him.

“Just don’t filter,” he said one night, lying in bed with her.

“It’s like the blue screen of death,” she said, describing her difficulty conveying her emotion with a widely used term for a Windows computer crash. “There are no words there.”

“You’re not a robot,” he insisted, intending to comfort her. “I know you can do this. You’re a human being.”

But not, she thought, the kind he wanted her to be.

In contrast to her boyfriend’s emotional probing, Jack’s enthusiasm for facts — like how far his green laser pointer could reach across the University of Massachusetts campus in Amherst — came as a relief. So, too, did his apparent lack of concern for fitting in. A supporter of President Obama, she found herself admiring Jack’s anti-Obama bumper sticker, which almost invariably elicited angry honks in left-leaning Amherst but once got him out of a ticket.

If Jack had trouble reading Kirsten’s expressions and body language, he also noticed that she had what he considered a perfect smile. On his laptop, he showed her bootleg episodes of his favorite TV show, “Breaking Bad,” about a chemistry teacher turned methamphetamine producer. And on the evenings when he argued libertarian positions with Kirsten’s boyfriend, a liberal Democrat, he often found himself disappointed when she went to bed early.

One afternoon in the fall of 2009 he asked if she was free to meet between classes at UMass, where she was enrolled as a freshman and he was studying chemistry for an associate’s degree. They talked about their childhoods in Amherst, both social outcasts even among their geeky classmates, offspring of academics. Jack’s poor grades reflected the hours he spent reading chemistry Web sites rather than doing homework; one teacher had suggested to Kirsten’s mother, an administrator at UMass, that she would be “a perfect candidate for home-schooling.”

Kirsten told Jack, at some length, of her desire to be a medical examiner. He replied, at even greater length, about chemistry, his interest having shifted from explosives to designing new compounds for medical use. Sometimes, as they circled the campus, she broke in with questions “What’s that?” she wanted to know when his descriptions grew technical, or “Why?” Accustomed to being treated with something more akin to polite fascination when he held forth on his favorite subjects — he often felt, he said, like a zoo animal — he checked to be sure her interest was genuine before providing detailed answers.

Jack, Kirsten noticed, bit his lips, a habit he told her came from not knowing how he was supposed to arrange his face to show his emotions. Kirsten, Jack noticed, cracked her knuckles, which she later told him was her public version of the hand-flapping she reserved for when she was alone, a common autistic behavior thought to ease stress.

Their difficulty discerning unspoken cues might have made it harder to know if the attraction was mutual. Kirsten stalked Jack on Facebook, she later told him, but he rarely posted. In one phone conversation, Jack wondered, “Is she flirting with me?” But he could not be sure.

But Jack, who had never known how to hide his feelings, wrote Kirsten an e-mail laying them out. And when Kirsten’s boyfriend pleaded with her to tell him what was wrong, she did, sobbing. She could not explain, she said. She knew only that she felt as if she had found her soul mate.

Road Bumps

From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.

Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.

“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.

“Only deep pressure,” she showed him, hugging herself.

He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.

“I’m sorry,” he said helplessly.

They found ways to negotiate sex, none of them perfect. They kept trying.

What mattered more to Kirsten was how comfortable she felt for the first time in a relationship. Even if she did something wrong, she believed, Jack would not leave her. When he remarked on her obliviousness after she chattered on one day about vertebrate anatomy to their neighbor — “Matson was totally bored,” he informed her — there was no judgment, only pride that he had managed to notice. “Is that why he was yawning?” she asked, laughing with him.

She moved out of her dorm and into his apartment that fall. Despite his distaste for her habit of scavenging, he did not complain when she decorated his bare living room with a plastic orange, magnetic trains and a Wolverine action figure rescued from the sidewalk. And when he rejected her suggestion that a cat would make the apartment cozier, she did not push it.

She liked his large hands, with their long, tapered fingers and wide knuckles, and thought he was the most interesting person she had ever met.

“You’re very pretty,” he told her frequently, looking up from his computer on their kitchen table to appreciate her tall, slender frame, her big eyes bright under her dark bangs.

For his part, Jack rejoiced to find that Kirsten did not hold certain social expectations that had caused him anxiety with a high school girlfriend. He apologized, for instance, that he failed to get her a Christmas present because he had not been able to think of what she would like.

“It doesn’t matter,” she said with a shrug. “I can tell you what to get me next time.”

She tolerated his discomfort with public displays of affection, though she pushed for more in private. When he explained that his lack of expression did not mean a lack of warmth for her — he often simply forgot — she devised a straightforward strategy to help him.

“When I put my hand on your leg,” she said, “you put your arm on my back.”

It was the disagreements that spiraled into serious conflicts when they could not understand and, then, find a way to comfort each other that threatened to break them apart. One might start over Kirsten’s request that Jack hug her when she came home from school, or his perception that she was already angry at him when she came through the door.

“The more we argue, the worse it gets,” Jack said once, close to despair.

One night as Kirsten cooked dinner, he peered into the pan where she was sautéing vegetables to comment on the way she had cut the cauliflower.

“It’s too big,” he explained. “It won’t cook through.”

“It’s better when it’s not all mushy,” she insisted.

“No,” he said. “You’re just doing it wrong.”

Eventually, Kirsten, unable to contain her tears, fled to the living room.

“What I want,” she told him when they analyzed their clashes in less-fraught moments, “is to be held and rocked and comforted.”

But Jack, believing himself accused of a slight he had not made, could not bring himself to touch her.

He needed to be apart, to cool down.

Once, he had tried to do as she requested, stiffly wrapping his arms around her, against all that seemed natural to him. But when it only seemed to elicit more tears, he did not try again.

Instead, he hovered near her. “Stop crying,” he would say, pacing the perimeter of the small apartment and returning to where she sat.

He could not distract himself at those moments, even with the chemistry entries on Wikipedia, or an old episode of “Breaking Bad.”

The Diagnosis

Looking for clues to fix her new relationship, Kirsten began frequenting autism Web sites like WrongPlanet.net, where hundreds of messages a day are posted. “Eligible Odd-Bods,” read one. Another, “Are relationships harder for Aspies?”

In the library, she paged through autism guidebooks, few of which contained any information about relationships, not to mention sex. But as she read about the manifestations of the condition, she recognized them — and not only in Jack.

A passage about the difficulty that people with autism have reading facial expressions reminded her of being mocked by a friend at age 5 with whom she had agreed to draw “angry ghosts.” The friend’s ghost had zigzag lines for scowling lips and a knitted brow. Kirsten, unsure how to depict anger, had drawn a blank-faced ghost with a dialogue box above its head that read “Grrr.”

In one chapter about the repetitive behavior and thought-process “ruts” that are common among autistic people, she saw her own difficulty climbing out of her black moods. Many children of her generation who probably had Asperger’s, she read, were misdiagnosed with A.D.H.D. because autism carried more of a stigma. Girls with the condition, one theory went, were overlooked because their shyness was tolerated more and “mother hen” friends might shield them from the worst social isolation, as had happened to Kirsten.

And then there was the characteristic of autism — focusing on a detail rather than the whole — that seemed to define the nitpicky arguments she and Jack had daily, even hourly, it sometimes seemed. There was the one, for example, when they were trying to recount something that had happened at a particular hotel, but could not advance past the semantics of its size.

“The hotel was miles wide,” Kirsten had started. “And — ”

“It was not ‘miles’ wide,” Jack had broken in. “It was maybe an acre, but not a mile wide, I can guarantee it.”

“I don’t think you can guarantee it,” she had retorted — and so on.

These fights, which Jack had dubbed “Aspie arguments,” were not soul-sapping, like the ones where he could not comprehend her need for a certain kind of comfort and she could not abide his inability to give it. But the cumulative effect was exhausting. It had been Jack’s similar escalation of arguments with his father that had prompted John Robison to send him to the therapist who gave him the Asperger’s diagnosis at age 15.

No prescription would come with a diagnosis, Kirsten knew. The only drugs for autism treated side effects, like depression or anxiety; she already had medication for A.D.H.D. It might help her get more time for assignments at school, where the constant effort of social interaction sometimes left her drained and struggling even with tasks that should be easy for her. But mostly, she wanted to know if there was an explanation for the awkwardness that had plagued her for so long.

Her answer came in the fall of 2010, the result of a six-hour battery of questionnaires and puzzles and a visit with a psychologist. “Lack of awareness of self-impact,” the report read. “Diminished expression of ordinary social graces.” She had left, the doctor wrote, “without a parting word.”

Many others with the same diagnosis, she knew, were more impaired than she. In online forums, she encountered skeptics who saw Asperger’s as an excuse for rudeness — or, worse, a means of pathologizing essentially normal behavior and diverting resources from those who were truly challenged. Her ex-boyfriend, she suspected, felt similarly about her own diagnosis when she reported the news.

But Kirsten took heart in the official acknowledgment and the community it made her a part of. She changed her account setting at WrongPlanet.net from “undiagnosed” to “Asperger syndrome” and persuaded her mother to pay for a therapist who specialized in treating people on the autism spectrum.

And between classes one day in the library that fall, she read the first chapters of “Thinking in Pictures,” the autobiography of Temple Grandin, the autistic animal scientist whose life story was made into an HBO movie. Kirsten, too, had always thought in pictures.

People with autism, Dr. Grandin suggested, can more easily put themselves in the shoes of an animal than in those of another person because of their sensory-oriented and visual thought process. Suddenly, Kirsten yearned for the kind of uncomplicated comfort and affection that came with a small furry animal.

She would talk to Jack again about a cat, she thought, closing the book.

A Meltdown

Kirsten’s diagnosis brought her closer to Jack.

Alex Plank, 25, the founder of the WrongPlanet Web site, also had Asperger’s and had enlisted Jack in the production of Autism Talk TV, featuring video interviews with autism experts.

Kirsten now joined them, and as they traveled to conferences, Alex’s tales of his own romantic ups and downs — echoed by many on his Web site — gave them perspective on their own dramas. “It’s easy for me to get a girl’s number,” he told them. “I can build attraction. But attraction isn’t enough.”

Still, Kirsten’s wish for more physical affection from Jack was proving harder to manage. Once, during a family gathering at his father’s house, she saw Mr. Robison put his arms around the woman he had been dating and would soon marry. That, she thought with a pang, was more than Jack would do unprompted even if there was no one around.

If she didn’t ask him so much, he would do it more, Jack countered. Didn’t she understand how fake it felt when he knew he was “supposed” to do it?

Yet when the opportunity arose to date other people, they did not take it. This past spring, a male student sitting next to Kirsten in anthropology class passed her a tic-tac-toe board he had drawn during a lecture. She played along, but when he asked her, “Do you have a boyfriend?” she replied, “Yes,” and that was the end of it. Nor did Jack, asked to lunch by his female lab partner, show any interest.

But at Fox Lane Middle School in Bedford, N.Y., where Jack and Kirsten, now Internet mini-celebrities, were invited to speak about autism, the staff asked them, “Have you ever thought about dating each other?”

“We’re so platonic,” Kirsten complained to Jack later. “They didn’t even know.”

Nor was she the only one now craving affection. “Why do you pet Tybalt more than me?” he asked after a visit to her mother’s house, referring to the family dog named for the Shakespeare character.

The talk about the cat, when she raised the issue again last spring, was not much of a talk. He was allergic, Jack told her. And the apartment already felt too small. It was obvious to him that it made no sense.

Yet he had grown up with a cat, Kirsten pointed out. His allergies were not so bad. She could keep him supplied with Zyrtec. If he wouldn’t hold her when she was sad, at least she could cuddle a cat.

It was obvious to her, too.

“I don’t want to talk about it anymore,” Jack told her.

They could both see the meltdown coming. This time, as she huddled, sobbing, in a chair in the living room, he stretched out next to her on the couch.

“Go in the other room,” she told him. “You don’t have to be here.”

But he wouldn’t leave.

Exploring Therapies

Jack and Kirsten considered autism a part of who they are, and fundamental to what drew them to each other.

But for a time this past summer, Jack became captivated by the idea of designing an empathy drug. On the nights when he was not manipulating the virtual economy of the computer game Eve Online, which he often played late into the night after Kirsten had gone to bed, he read all he could find on the hormone oxytocin, which has been linked to trust and social interaction.

A small study suggesting that some of the social difficulties associated with Asperger syndrome could be relieved temporarily by inhaling an oxytocin nasal spray had generated media interest the year before.

But to Jack, the more interesting possibility was a drug that worked on the same principle as the popular antidepressants called S.S.R.I.’s, whose effect could last considerably longer than a spray.

“I’m sure people are working on it,” he told Kirsten, showing her an obscure Wikipedia entry he had found on the subject one night. “But no one’s published anything so far as I could tell.”

He explained, in his animated way, why the chemistry should work, and also, why it might not.

Then he paused.

“I wonder if I took it, whether I would be better at being affectionate,” he said.

“I wonder,” she said, “what effect it would have on me.”

They had both undergone a different experimental treatment, for a study at Harvard Medical School. Jack’s father believed that earlier studies with that procedure, which delivered current to areas of the brain, had given him a temporary insight into other people he had not had previously. But they had noticed no such effect on themselves.

And Kirsten had been working hard with her own therapist to develop strategies for soothing herself. When she found herself in a bad-mood rut, she had agreed with her therapist, she would visualize Fluttershy, the nerdy intellectual character in the animated children’s show “My Little Pony” — of which her knowledge bordered on encyclopedic and whose goofiness made her laugh. She also kept a list of “twisted thoughts” that she sought to resist when they came, like her tendency to presume Jack was angry when he was making a neutral observation.

“I think it’s helping,” he told her.

A cat, she thought, would help more. In recent weeks, she had been showing him irresistibly cute pictures of kittens from a forum on Reddit.com called “aww.” But she did not mention the cat that night. Instead, she asked if he would come to bed with her rather than staying up to play Eve.

“Will you pet me if I come to bed?” he asked.

She agreed.

Giving Ground

Around Thanksgiving, Jack began to think that he should let Kirsten get a cat. Maybe he would keep the idea a secret, he thought, and make it a Christmas gift. He wasn’t sure.

But Kirsten, taking matters into her own hands, stopped by the animal shelter one day to see if it was possible to get a hypoallergenic cat.

There is no such thing, she told him on arriving home, but females, the shelter staff had told her, are less allergenic — so perhaps that was an option.

“Forget it, then,” Jack said absently.

He had not meant it as a final word. But Kirsten, feeling tears welling up, employed one of the new strategies she had discussed in therapy: going out for a drive, rather than wallowing.

Jack called on her cellphone almost as soon as she pulled out of their street.

“What are you doing?” he asked. “Are you — leaving?”

Trying to control her voice, she said nothing. And then, she managed, “No.”

She was driving into Amherst, hoping to see a friend.

In the apartment alone, he paced, the phone to his ear.

“Kirsten,” he said. “Just come back. We’ll get the cat.”

He did have one requirement: it had to be able to chase a laser pointer.

Dating Advisers

On a day early this month, before their planned trip to the animal shelter, Kirsten and Jack stood before a group of young adults with autism at the Kinney Center for Autism Education and Support in Philadelphia, answering their questions while Jack’s father addressed their parents in a different room. “Did you ever think you would be alone?” one teenager wanted to know.

Kirsten answered first. “I thought I was going to be alone forever,” she said. “Kids who picked on me said I was so ugly I’m going to die alone.”

Her blunt tip on dating success: “A lot of it is how you dress. I found people don’t flirt with me if I wear big man pants and a rainbow sweatshirt.”

Then it was Jack’s turn to answer, in classic Aspie style. “I think I sort of lucked out,” he said. “I have no doubt if I wasn’t dating Kirsten I would have a very hard time acquiring a girlfriend that was worthwhile.”

A mother who had slipped into the room put up her hand.

“Where do you guys see your relationship going in the future?” she asked. “No pressure.”

Kirsten looked at Jack. “You go first,” she said.

“I see it going along the way it is for the foreseeable future,” Jack said.

One of the teenagers hummed the Wedding March.

“So I guess you’re saying, there is hope in the future for longer relationships,” the mother pressed.

Kirsten gazed around the room. A few other adults had crowded in.

“Parents always ask, ‘Who would like to marry my kid? They’re so weird,’ ” she said. “But, like, another weird person, that’s who.”

The Cat

The next morning, Kirsten woke up from a nightmare: they were late to get the cat, and she couldn’t reach Jack. She was riding a motorbike with pedals in weird places, and she couldn’t find the animal shelter.

In fact, they would have just enough time to reach the shelter before it closed after getting breakfast and buying a laser pointer with a lower-intensity red beam than his green one to test the prospective adoptees. In the car, Kirsten noticed a blinking “E” on the gas gauge, and the couple had the following exchange:

Kirsten: Oh, we need to get gas. Do you want to stop at the 7-Eleven?

Jack: No, we’ll stop on the way back.

Kirsten: How can you not get stressed when that thing is blinking?

Jack: I’m not intimidated by liquid crystal displays.

Kirsten: You know what I mean, you get anxious about everything.

Jack: I know we have at least 20 miles of gas.

Kirsten: We have to drive seven miles there, and then seven back.

Jack: No, we have three miles back.

Kirsten: Should we just stop at 7-Eleven?

Both of them breathed a sigh of relief when the only female kitten at the shelter pounced without hesitation on the red laser beam Jack shined into her cage. At home, however, she ran straight under the old-fashioned bathtub.

Jack bent down and scooped up the kitten, holding her up to the mirror above the sink. Kirsten stroked its black fur in his arms, their hands touching briefly across its back, and in the reflection.

“Are you looking at yourself in the mirror?” Jack asked the kitten. “Are you smart enough to recognize yourself?”

They stood for a moment together, awaiting the reaction.

Postscript

[Linna Heartbooger]

Here's an article from a few years ago that I thought was amazing...
Reaching an Autistic Teenager

Here are some parts of it that were highlights for me:

When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. “What this school needs,” he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, “is a magic cabinet.”

“What would it do, Sam?” Lucie asked, delighted.

He was trying to forgive her, but he kept asking, “Elana, why did you make the fire alarm go off?” His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him.

“I hate that noise,” Ty said. “That’s a bad noise. That has a witch’s voice.”

“You really didn’t like that noise,” she agreed.

“This can NEVER HAPPEN AGAIN,” he sobbed, demanding that Rebecca promise him. “This will never happen again, will it? This can never happen!

“I need you to call my mom,” he said, weeping. “I’m having a very bad day. Will you call my mom? I need her to come get me.” I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic!

“If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.”

Gently Richter moved Ty from unreality (“the witch’s voice”) onto solid ground (“I’m having a bad day”). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. “When Ty came home that day, we talked through the events, as the school has trained me to lovingly do,” Judy Martin told me recently, “and Ty said, ‘Mom, I feel bad for Elana, because she didn’t mean to do it.’

“ ‘Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him.”

Their daughter... is without affect, her movements ungainly and her eyes unfocused...

“We’re going to try to get a continuous flow of back-and-forth going here,” Dr. Greenspan says.

The mother smiles sadly, knowingly. “That would be nice,” she says.

“We’re going to build on what she does,” the doctor says.

The girl is flapping a plastic toy in her hand. “Will she give it to Daddy?” Dr. Greenspan asks.

“Can I see that?” the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: “There’s a star on it! And there’s a triangle!”

“Here you’re losing her, Daddy,” Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. “If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her.”

The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. “See if she’ll give it to you,” the doctor prompts.

“Can you give it to Mommy?” the mother asks, and surprising everyone, the girl hands it over. “Thank you!” the mother says.

The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. “Huh-huh-huh!” The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it.

“Good, good!” Dr. Greenspan cheers.

“Can I have it back?” the mother asks. The mother hides it inside her own sweater, half-exposed.

“Let her get it! Let her get it! Let her get it!” Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: “Let her do it! Let her do it!”

The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! “Ooh! Ooh! Ooh! Ooh!” she says.

[peter]

Just to agree with Avatar above and say that if you get a chance, read the final chapter (I think - in fact read the whole book) of Oliver Sacks' "The man Who Thought His Wife Was A Hat". It deals with the subject of autism in Sacks usual sensitive style with some truly amazing case history's demonstrating just how special the gifts of these people are - and how fragile.

[Menolly]

A new article a friend shared with me on Facebook.

How Autism is Changing the World for Everybody

There's not much doubt that autism, along with Asperger Syndrome, is finally becoming accepted as a normal part of the human fabric. Even if some people still see autism as a condition that needs to be "treated," it's increasingly obvious that people on the autism spectrum are finding ways to succeed in our neurotypical-based society.

Not only that, but autistic people are changing the nature of our society as well — in many ways, for the better.

The image above was drawn by Stephen Wilshire, a British architectural artist who has been diagnosed with autism. He is known for his ability to draw a detailed landscape from memory after just seeing it once.

To better understand how it is that autism has come to impact so significantly on mainstream culture, we spoke to two experts on the matter, Steve Silberman and Andrea Kuszewski. Silberman is a longtime contributing editor at Wired and is currently at work on his upcoming book, Neurotribes: Thinking Smarter About People Who Think Differently. And Kuszewski is a consultant and behavioral therapist for children who are on the autism spectrum, and an expert in finding alternative learning strategies for gifted kids. We also talked to other people whose lives have been touched by autism.

Through our conversations with Silberman and Kuszewski, it became clear that autism has played a significant role in crafting much of what we consider to be modern culture — from the music and books we read, to the technological devices we all take for granted. The acceptance of radically different ways of thinking, it turns out, can be seen as an integral part of a rich and diverse overarching culture.

Not the way it used to be

Today, talk of autism is normal, and most of us are familiar with it. But as recently as two to three decades ago, kids on the spectrum were mercilessly teased as being nerds or geeks. While many today wear those labels as points of pride, it was certainly not the case back then — they were used as put-downs, a way of calling out kids who had a hard time socializing — and who at the same time exhibited a kind of smartness that caused them to be alienated from the "normal" kids.

A major turning point in this story came with the release of Rain Man in 1988 — a movie that did as much harm as good. On the one hand, Rain Man spread misconceptions, but on the other hand, it made many people aware of autism for the first time. While painting an overly severe depiction of the condition, Rain Man served as a catalyst for a huge shift in the mainstream understanding of autism.

In fact, as Silberman tells io9, most pediatricians hadn't even heard of autism prior to the film's release. It was once seen as a rather arcane disease that didn't deserve mention in most textbooks — but one that was thought to be related to childhood schizophrenia.

"After Rain Man, we started to realize that autism is common," said Silberman, "and that society was going to have to deal with it — that we were going to have to accept these other kinds of humans."

More than two decades later, the socio-cultural landscape surrounding autism has shifted. The rising acceptance of neurodiversity has represented a seminal cultural adjustment in the early parts of the 21st century.

Indeed, as Kuszewski tells io9, we're now starting to notice it almost everywhere — and at the same time, there's less of a stigma surrounding it. "If anything," she says, "it's slightly trendy to have Asperger's."

And with nearly 1 in 88 people diagnosed today, it's becoming increasingly difficult to ignore. Silberman quotes Jonathan Lethem, describing it as the "defining room tone of our time."

Moreover, there may actually be many more who go undiagnosed. "It's very important to remember that people who get diagnosed are a minority in a very broad field of people who are kind of only talked about jokingly," he says. "There may be broad autism phenotypes — people who have traits — but would probably not earn or seek a diagnosis." Many of these people, notes Silberman, could use the support. "This is not some kind of yuppie flu," he adds.

The autistic aesthetic

The signs of autism's reach are beginning to been seen virtually everywhere. People on the spectrum are driving the creation of alternative forms of expression, new businesses and institutions, and cutting-edge technologies. "And not only do they make these things comfortable for themselves," noted Silberman, "they're useful for all of us."

Silberman is right. A quick roster of known or suspected autistic artists who have made an impact in arts and culture includes such seminal figures as Stanley Kubrick, Andy Warhol, David Byrne, Brian Eno, Satoshi Tajiri (creator of Pokémon) and many others. Their contributions have become an indelible part of the zeitgeist.

They're also making an impact in tech media, or what Silberman refers to as the geek landscape. Geek entertainment sites such as Wired and BoingBoing "are built for neurotypicals, but serve the aesthetic of autistic people as well."

Indeed, it's hardly a secret to admit that autistic kids and adults are drawn to technology — science fiction in particular — and fascinatingly, it has almost always been that way. Back in the 1960s and 1970s, it was the fixation on rocket ships and flying to the Moon that convinced pediatricians that there was something deeply wrong with these kids — that their unworldly and impractical obsessions were signs of a deep psychological malaise.

"But fast forward to today and what do we find, but that we're actually doing it," noted Silberman.

There's no understating the importance of the autistic aesthetic to the rise and popularity of science fiction and similar genres. The elaborate, technically accurate science fiction universe is an autistic playground.

Autistic people are also changing the way in which existing art and culture is appreciated. A prime example are the so-called sensory friendly showings of movies and Broadway shows. These are special showings in which the sound is turned down, the lights are up, and children are free to walk around (which must also be a welcome relief for people with ADHD). These shows are incredibly popular and often sell out — a possible indication that neurotypicals are also keen to take advantage.

The Rise of Maker Culture

One area in which autistic people are making an impact is maker culture. "Many on the spectrum love to take apart and then rebuild or change or hack mechanical devices," said Silberman. It's resulted in a convergence of geeks and the popularization of tech culture.

A good example of this is John Elder Robison, author of Look Me in the Eye: My Life with Asperger's. Robison is fascinated by both computers and mechanical devices. Once a guitar technician for Kiss, he now runs a very high-end body shop for sports cars.

"What you see is that kids with autism and Aspergers love this culture," said Silberman, "it totally plays to their strengths."

Kuszewski agrees. She recently relocated her office to the Bay Area to work on an education program based on a hacker space model — and she's getting considerable interest. When working with clients, she has found that they're "really hyper" into one specific niche area, including such things as resistors, trains, math, stats, probabilities, and virtually anything technical. "They have these really deep interests," she noted, "and they geek out over it and it's like their whole world."

And the sentiment is infectious. "I started to respect the people that were totally into something obscure and technical and completely proud of it, said Kuszewski, "I admired how they were so willing to put their obsessive nerdiness on display." Working with these kids, she started to find it hard not get excited about even the most arcane things. "You get so thrilled over such tiny little things."

One young man who certainly qualifies for this camp is 15 year-old Joey Hudy, a talented young man with ADD, ADHD and Asperger's. Struggling at school and finding it hard to make friends, Hudy credits maker culture with changing his life.

"I now have a career that I like," he tells io9, "I am inspired by a lot of other people — and now I only make." He tells us about how lonely he was a year ago, without any goals or friends. Since discovering the maker movement, he has become more self-confident and happy. "I found the place where I belong," he says, "All my maker friends are like family."

And since getting involved in maker culture, Joey hasn't done badly at all. He recently returned from the White House, where he got to show off his Marshmallow Cannon to President Obama. He also has his very own maker kit on the market. And he's subsequently developed talents for programming, soldering, building, and designing.

We ask Hudy what people who don't have autism can learn from maker culture. "Same thing that I have: Everything," he says.

Hudy, like so many kids his age, is finding a way to adapt to a neurotypical world, and in the process, is helping to change the overarching cultural landscape.

Indeed, as Kuszewski tells us, kids like Hudy didn't have a way to meet others like them. "Now, with the internet, you're able to form these clubs and groups with people to share online," she said. Realizing that you're not alone and don't have to hide is confidence building. And what's more, it's not just an "autistic thing" — the ability to share highly technical information, and to not feel embarrassed or ashamed about it, is starting to be accepted by the larger population.

And these subcultures are trickling into the mainstream. Take Burlington, Ontario's McKay family, for example. In a family of six athletic overachievers (mom and dad included), parents Justine and Jason struggled to accommodate their 10-year-old son Nathan, who had very little interest in sports. After coming to the realization that Nathan enjoyed tinkering with gadgets and electronic devices, they enrolled him in a robotics program. Unsure at first about what they were doing, his parents quickly realized that there didn't need to be a stigma attached to "nerdy" things.

"Ebots provided Nathan with an environment where he was part of the group, a group that shared a passion for robotics," Justine tells io9. She also started to notice positive changes in Nathan as well, such as a genuine excitement for class and a newfound confidence. "This makes being smart cool," she says, "It gave Nathan a place to be himself and be comfortable about it."

Thoughtful communication at a distance

For a group of people who supposedly suffer from a "social communications disorder," autistics like Joey Hudy have shown a great desire to be social and share in their achievements with others — at least when they're given the right tools.

Silberman observes that mobile devices, tablets, and texting have largely become assistive technologies for non-neurotypical people — even though they're not limited in application to a specific niche at all. These are cheap, general-use devices that are perfectly well suited for both autistics and neurotypical people. And best of all, they allow people with autism to consider their thoughts before they speak.

"And given that neurotypicals use these devices in pretty much the same way, you end up with a culture that's very much amenable to how autistics prefer to work," said Silberman, "and you've largely got a culture much like the one we see now."

Today's superstars

But perhaps nowhere is the influence of people on the autism spectrum felt more widely than in the tech sector. "So many startups and businesses are based around" these people, notes Kuszewski.

According to Gawker's Ryan Tate, notable entrepreneurs on the spectrum include Facebook's Mark Zuckerberg, Craigslist's Craig Newmark, and Bittorrent's Bram Cohen. And as Tate points out, autistic characteristics such as obsessiveness, impaired social interaction, and clumsiness can be beneficial in the tech sector. It's quite possible that these "impairments" are likely behind their success.

And these entrepreneurs are being celebrated as superstars and role models. "They've become this well accepted, superhero-type, rather than the person who was picked on in high school," noted Kuszewski.

A force for diversity

Modern culture is clearly being defined and influenced by our willingness to celebrate and learn from those who think and act differently — a clear sign that tolerance, accommodation, and understanding benefits all of us.

But not only that, the rise of autistic culture shows how important it is to have alternative psychological modalities as a part of the cultural fabric. In an age when economic globalization and other factors threaten to homogenize human culture, it's good to know that different minds can still give rise to new ideas.

[Linna Heartbooger]

Hey... I'm gonna attempt a thread-rez here... at least a mini-thread-rez.

A friend of mine told me she's autistic (to my surprise).
When I later told her an anecdote about Temple Grandin, she was like, "I want to read her book so I can hear about others' experiences."
Who else here has been exposed to the awesomeness of Temple Grandin?

I have no idea how many of my friends in the past are people who are on the spectrum; to me the "divide" is not something I automatically notice.
And I'm super-wary of making amateur diagnosis.
And I'm afraid to ask people because autism is just leaving (or maybe hoping to leave?!) its social stigma behind.


Does anyone have an idea:
How do you ask an adult, "Are you autistic?"
Hrmm... I am thinking I should be able to figure this one out myself, but... would love others' insights.

Also, I didn't say it before, but I LOVED this exchange:

Kirsten: Oh, we need to get gas. Do you want to stop at the 7-Eleven?

Jack: No, we’ll stop on the way back.

Kirsten: How can you not get stressed when that thing is blinking?

Jack: I’m not intimidated by liquid crystal displays.

Kirsten: You know what I mean, you get anxious about everything.

Jack: I know we have at least 20 miles of gas.

"I'm not intimidated by liquid crystal displays."
So literal most people have to look twice to get it.
So classy.

[Wosbald]

+JMJ+

Pope calls autistic teen who 'corrected' him on Sign of Peace [Video]

ROME -- Last Wednesday Maria Teresa Baruffi, who lives in the northern Italian town of Caravaggio with her family, received a surprising phone call while standing in line at the supermarket: It was Pope Francis, asking to speak to her son, Andrea.

Several days prior, Andrea, who is 18 and has autism, had sent a letter to Pope Francis to "correct" him because, during the time of the coronavirus, he invites those present inside the chapel for his daily livestreamed Masses to make the Sign of Peace, typically expressed with a handshake or a kiss.

According to Francis, the youth told him, "You say, 'Peace be with you,' but you can't say that because in the pandemic we can't touch each other."

During his April 29 call to Baruffi, Francis explained that he wanted to give Andrea an answer. However, since Andrea was not with his mother at the supermarket, the pope said he would call back when she was at home, and he did.

This time both Andrea and Baruffi's husband were there with her to take the call, which was put on speakerphone. The moment was video-recorded by another member of the family and published online.


'Pronto, sono papa Francesco': la telefonata del Pontefice a un ragazzo autistico di Caravaggio [YouTube: 5 min]



During the call, Pope Francis said he told Andrea, "I am happy you wrote to me," and said he would send Andrea a papalino, the white skullcap worn by the pope, which Andrea had asked for in the letter.

After getting a kiss from Andrea through the phone, Francis told the teen that during his Masses in the Vatican's Casa Santa Marta, where he resides, "the people do the sign of peace, but they don't touch. They give each other a little greeting with the head. So, it's all okay." It was an answer that made Andrea smile.

Baruffi explained to the pope that Andrea is an adamant follower of his morning Masses and has a fascination with liturgical vestments.

"All our priests know him because he is extremely religious," she said, calling her son "a blessing from heaven."

Pope Francis then asked how many were in the family, and Baruffi said four -- her husband, two sons and herself. She also asked for prayers for her elderly mother, who has Alzheimer's, and said the priests at their parish, having heard he would call again, also sent their greetings and voiced their desire to see him in Rome.

"Very good. But when things are back to normal, no?" the pope said, referring to the coronavirus lockdown, because "Right now you can't travel between regions."

Pope Francis closed the call offering the family his blessing and asking for prayer, but not before making a small joke with Baruffi, who told him that, "We pray a lot for you, but you don't need it, you are already a saint."

Jesting, he laughed, and said, "Who knows, maybe we'll see each other in hell?", to which Baruffi said, "I think for you no, but us perhaps. We're a little bit mean with everyone in this situation."

After exchanging another laugh and getting another kiss from Andrea over the phone, the call was over.

Francis spoke of Andrea and his letter during his April 29 daily Mass, recounting the "correction" Andrea had wanted to make, adding, "the letters of boys, of children, are beautiful, because of their concreteness."

[...]

[Skyweir]

Haha how oddly Freudian... that he would say that even in jest.

Makes you think, no?