Autism is a scary word to many. When most people think of autism, they think of “classic autism” as portrayed in old movies and descriptions of children sitting alone in a corner rocking, and who frequently developed little language and had tremendous difficulty interacting with others and learning a wide range of skills.

The definition of autism has changed considerably and today the term covers a much broader group of individuals, including individuals with language and average to above-average intelligence. In the diagnostic manual used by doctors and psychologists in the United States, the Diagnostic and Statistical Manual of Mental Disorders-IV, Text Revision (DSM-IV, TR), what we often call autism spectrum disorders is technically under the umbrella diagnostic category of Pervasive Developmental Disorders (PDD).

As one might imagine, this is not a particular “popular” phrase either. However, it is an important phrase-because we need to recognize that an autism spectrum disorder significantly affects many aspects of functioning. The most common autistic spectrum disorders are Autistic Disorder (autism), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Asperger’s Disorder. Sometimes doctors say that a child has PDD; however, PDD is not a specific diagnosis. In all likelihood it means that the doctor believes that the child has one of the pervasive developmental disorders.

Why Do Different Professionals Give My Child Different Labels?
It is common for parents to take their child to different professionals and receive different diagnoses. One doctor may say, “He doesn’t have autism. He has PDD-NOS.”

Another professional may say. It’s not autism or PDD-NOS, but rather – Asperger Syndrome.” There is little agreement among diagnosticians as to which label most appropriately describes a given child. So whether your child is technically diagnosed with Autistic Disorder, PDD-NOS, or Asperger’s Disorder (also often called Asperger Syndrome), it probably is not that important in terms of what you can do to help your child.

I Don’t Want Him Labeled
Receiving a diagnosis for their child can be upsetting to parents. However, learning that your child has an autism spectrum disorder (ASD) can be very helpful to you, your family, and your child. Many parents, who often have been searching for a long time to understand their child’s struggles, are relieved to finally have a diagnosis that makes sense.

Learning about ASD is the first step in helping you learn about your child and getting the necessary tools to serve as “conductor of you’re your child’s orchestra.” It is through a partnership between parents and professionals that issues can be discussed from various viewpoints to help parents determine:

(1) What skills are most important for my child to work on? and

(2) What is the best use of our family’s’ financial and other resources (such as time) to help our child?

Another reason a label can be important is because it may allow you to access services. In some cases, children may be eligible for services if diagnosed with autism; but not if the diagnosis is PDD-NOS or Asperger’s Disorder. Because of these types of issues, it is a good idea for parents to keep all diagnostic records and then decide what would be useful in securing services for their child.

Areas of Impairment in ASD
In the United States, medical doctors and psychologists use the DSM- IV TR (Diagnostic & Statistical Manual of Mental Disorders-4th Edition, Text Revision) to classify developmental and psychiatric disorders. In the DSM-IV TR, individuals with ASD are described as having impairments in three primary areas: (a) social interaction; (b) communication; and (c) restricted range of interests, patterns, and behaviors.

Many children with ASD also have related difficulties. This often includes problems with attention, organization, emotional regulation, behavior, and motivation. Many children have intact or enhanced skills in certain areas, such as long-term rote memory and attention to details. Yet others have weaknesses in specific areas of learning. This might be in academic areas, such as reading comprehension, or in other areas of brain functioning, such as how quickly (or slowly) they process information.

Learning how your child functions across all of these areas can be very helpful in prioritizing goals and helping your child improve his skills.

“The Doctor Said My Child Is High Functioning. What does that mean?”
There is not a universally agreed-upon definition of high-functioning autism. In all likelihood, diagnostician says your child is “high functioning,” he or she means that your child has a significant amount of language and does not have mental retardation, along with the ASD. (An IQ of 70 or above is considered to be above the cut-off for mental retardation.)

Having a higher IQ probably means that your child has the potential to learn more skills than a child with a lower IQ, so it’s a good overall indicator that your child has the potential to improve significantly. The child who has developed considerably language is able to communicate his wants and needs more effectively than a child with less language. In most cases, the child with more language is also better able to understand what others are trying to communicate. This is also very important for lifelong success and well-being.

Unfortunately, having an autism spectrum disorder is not a mild problem. By definition, to be diagnosed with an ASD the child has to demonstrate significant impairment in functioning such as language, social skills, etc.

However, we have improved our ability to diagnose ASDs earlier and are rapidly expanding our knowledge of strategies that can help children with high-functioning autism. In all likelihood, this means that the outcomes for individuals with high-functioning autism are improving all the time.

What Are Some of the First Steps I Can Take to Help my Child?
*Take care of yourself and your relationships. By addressing your own emotional well-being and nurturing the important relationships in your life, you will assist your family in becoming more resilient.

*Seek professional help, whether through faceto-face support groups, on-line support groups, or seeing a counselor or therapist.

*Learn about ASD. There’s a tremendous amount of information available. It is difficult, however, to determine what information is most reputable. Seek out professionals you can trust to provide you with information as objectively as possible.

Diane Adreon, M.A. is Associate Director University of Miami/Nova Southeastern University Center for Autism & Related Disabilities and co-author of Asperger Syndrome and Adolescence: Practical Solutions for School Success
Read more: http://www.autismsupportnetwork.com/resources/when-your-child-diagnosed-autism-987123#ixzz1lekpSBfk

Parents’ greatest worry is what will happen to their children when they are no longer able to watch over and advocate for them. Here are some tips about what you should focus on to assure your children with special needs have the best chance for a happy life after you are gone.

1. Be sure there are people in their life who are not paid to be there. You may be lucky enough to have one or more people who will take up where you leave off. Many people are not as lucky. Start now by developing a formal or informal circle of support for your child. There are specific steps you can take to do this. If you want to know what they are, read my blog entry titled “Who Will Take Over.”

2. Social skills are the most important thing to work on with your child. Many may argue that eliminating problem behaviors or developing effective communication are the most important skills a child can acquire, and I agree that they are critical. Believe it or not, when your child is 40 years old, there are plenty of people (usually staff who work in the field) who will want to spend time with him even if he doesn’t talk and even if he hits them. This is because they have found a way to connect. People fall in love with a personality or a smile or because of the hug they get at the end of the day. Focus your energy on helping your child learn to do things that will connect him to other people. Until they can do this on their own, be sure you have plenty of videos, stories, and “All About Me” books that show others the loveable, quirky, and unique person behind the autism. Lonely people rarely lead happy lives.

3. The more interests they have and things they like to do, the happier they will be. The great thing about a lot of kids and adults with special needs is that they often have passionate interests. Celebrate this—it could become a future career. The fact is that the more things they can do to occupy their own time, the easier it is to be around them. If they are easy to spend time with, more people will want to do this. We are all happiest when we are engaged in something we enjoy. Offer your child hundreds of big and little things to do and hope that a few of these will stick. Make sure EVERYONE knows about their favorite activities.

4. Unless your child can do it on their own, YOU need to make a plan to assure their happy future. Special needs trusts, letters of intent, and futures planning are all great and necessary, but they don’t take the place of a life quality plan. You need to think about each category of life (residential, friendships, recreation, etc.) and write out what you believe they need in these areas in order to be happy. If they are able, your child should help you. If this is too big a job to tackle, you can have someone do it for you. To learn more, go to www.teriinc.org/ialq and click on Life Quality Planning.

5. Help them do things that society values: Unfortunately, despite the fact that we have made some progress, people with significant special needs are still viewed by much of society as folks who aren’t able to make much of a contribution. Prove them wrong. Think beyond recycling and cleaning tables when you are helping your child get ready for adult life. Instead, think, “What does society value?” We value friends (can your child become a “friend” to someone in a nursing home?); community volunteers (can your child be part of the group that volunteers once a month to paint houses for the poor?); members (of a church, synagogue, club, team, or class); home and business owners (Google “Poppin Joes in US World and News Report” for an inspirational story). Start now and keep expanding. Even people with very severe autism can contribute, you just need to get them connected. If you can afford it, get a Special Needs Life Quality Coach to help you.

Here’s a final, bonus tip. Your kids won’t be happy now, or in the future, if YOU are exhausted, broke, and overwhelmed. Step back, get reasonable, and focus on what you need to do (or stop doing) so that you are able to be a parent who has the time and energy to simply enjoy their child, as they are, right now. You are more important to your child’s present and future life quality than any therapy, plan, or treatment.

Dr. Krysti DeZonia is Director of Education, Research, and Life Quality Planning and Support and co-founder of TERI (Training, Education, and Research Institute-www.teriinc.org). She received her Bachelor’s degree in Education and her Master’s Degree in special education from Northern Arizona University and Prescott College. She continued her educational pursuits, earning her Doctorate in Education from the University of California San Diego. “Dr.K.” has over 30 years of experience working with children and adults with a wide range of developmental disabilities and their families, with particular experience with individuals on the autism spectrum.

Question: Does My Child with Autism Have Too Few Friends?

I am very worried because my son who is now 10 years old has very limited friends. Actually he likes to play with just one other boy who also has issues. It doesn’t seem to bother him, but I am very worried about how lonely he will be when he is older. I have many friends and some of them since grade school. I don’t want my child to suffer as I fear he will, and even more so in the future. Can you help me with my own worries and also with my son?

Answer: From Dr. Robert Naseef:
Your dilemma raises the concerns of many dedicated and loving parents. That your child seems happy now is a blessing not to be taken lightly, but obviously that is not a guarantee of future happiness. Pleasant memories of your own childhood are also a good thing. The good and bad memories of our own childhood are never far for all parents who inevitably have important formative experiences in their personal history. We want our children to have happy experiences like our own and we want to protect them from some painful incidents. In this sense, we have one foot in the past (in the families we originated in), and one foot in the present, in the family we have created.

The diagnosis of autism carries with it difficulties in relating and communicating, which impacts the expectations that parents have for their children. This does not mean that a child is incapable of relating and communicating, but it does mean that life will be very different than expected. Undoubtedly your son’s condition has been a challenge for your family. I want to call your attention to the essay, “Don’t Mourn for Us” by Jim Sinclair. This adult with autism helps parents to sort out these very important issues. As he puts it, “Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with.”

Friendship is but one of these different experiences. That your son has a friend he likes to be with is to be celebrated. There is little doubt that you would prefer him to have a more normal friend, but it is no surprise that he might have more in common with a kindred spirit – another child with differences. This is not to belittle or deny your own feelings. It is important to accept your own emotional reaction to your child’s differences, including your worries about his future happiness. Accepting your worries, noticing them, honoring them, and letting them wash over you is the best way to help yourself and your son to be happy and to be all he can be. What I think we have the most control over is just this: our relationship with our child who has a challenging life, who is very different, and who is beautiful and loveable each and every day.

From Dr. Cindy Ariel:
We all want the very best for our children and we often compare their lives with our own at every stage. In many ways, this helps us to relate to them and to help and guide them as they grow. In other ways, though, it encourages us to project some of our own issues onto our children and treat them as if they are ourselves. Our children are very much like us in many ways, but they are not us.

It is difficult to learn to separate our children from ourselves. Especially, as mothers, we have felt the extreme biological connection as our children literally were inside of our bodies and attached to us; we once even shared their life-line of oxygen and blood. We know they are so deeply a part of us, and yet we must learn to separate ourselves and understand them as individual people now surviving and growing on their own, with limited help from us.

You sound like a very social person. It’s fantastic that you enjoy people so much and are able to maintain such long-term friendships. I’m sure this has helped you in many ways throughout your life. Your son may not be as social as you are. The fact that he has any friends at all is a positive thing. Many people are fine with only one or two close friends and feel much more comfortable living this way.

Many children on the spectrum end up gravitating to other children who may be different and can understand what it feels like to be different; they sometimes find relationship in and through their differentness and it is comforting and comfortable for them. It doesn’t sound like your child is suffering the way you might be if you did not have so many friends. You can give him encouragement and opportunities to be around and interact with others and his level of comfort around others may slowly expand. But pushing it may only make him feel more and more uncomfortable.

An important part of healthy growing up is the ability to love and be loved. There is no standard as to how many people you must love or be loved by. Try not to worry about his friendships so much unless he shares with you that it is distressing to him. Helping him with this one special friendship may help him to open himself up more and could eventually impact other relationships. Your son is lucky to have you at his side, obviously loving him.

Courtesy of About a NYTimes Company

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

When I was in fifth grade, my brother Alex started correcting my homework. This would not have been weird, except that he was in kindergarten—and autistic. His disorder, characterized by repetitive behaviors and difficulty with social interactions and communication, made it hard for him to listen to his teachers. He was often kicked out of class for not being able to sit for more than a few seconds at a time. Even now, almost 15 years later, he can still barely scratch out his name. But he could look at my page of neatly written words or math problems and pick out which ones were wrong.

Many researchers are starting to rethink how much we really know about autistic people and their abilities. These researchers are coming to the conclusion that we might be underestimating what they are capable of contributing to society. Autism is a spectrum disease with two very different ends. At one extreme are “high functioning” people who often hold jobs and keep friends and can get along well in the world. At the other, “low functioning” side are people who cannot operate on their own. Many of them are diagnosed with mental retardation and have to be kept under constant care. But these diagnoses focus on what autistic people cannot do. Now a growing number of scientists are turning that around to look at what autistic people are good at.

Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70 to 80 percent of the affected population. But when Meredyth Edelson, a researcher at Willamette University, went looking for the source of those statistics, she was surprised that she could not find anything conclusive. Many of the conclusions were based on intelligence tests that tend to overestimate disability in autistic people. “Our knowledge is based on pretty bad data,” she says.

This hidden potential was recently acknowledged by Laurent Mottron, a psychiatrist at the University of Montreal. In an article in the November 3 issue of Nature, he recounts his own experience working with high-functioning autistic people in his lab, which showed him the power of the autistic brain rather than its limitations. Mottron concludes that perhaps autism is not really a disease at all—that it is perhaps just a different way of looking at the world that should be celebrated rather than viewed as pathology.

Having grown up with two autistic brothers—Alex, four years younger than I, and Decker, who is eight years younger—Mottron’s conclusion rings true. As I watched them move through the public schools, it became very clear that there was a big difference between what teachers expected of them and what they could do. Of course, their autism hindered them in some ways—which often made school difficult— yet it also seemed to give them fresh and useful ways of seeing the world—which often don’t show up in the standard intelligence tests.

That is because testing for intelligence in autistic people is hard. The average person can sit down and take a verbally administered, timed test without too many problems. But for an autistic person with limited language capability, who might be easily distracted by sensory information, this task is very hard. The most commonly administered intelligence test, the Wechsler Intelligence Scale for Children (WISC) almost seems designed to flunk an autistic person: it is a completely verbal, timed test that relies heavily on cultural and social knowledge. It asks questions like “What is the thing to do if you find an envelope in the street that is sealed, addressed and has a new stamp on it?” and “What is the thing to do when you cut your finger?”

This year Decker was kicked out of a test much like WISC. Every three years, as he moves through the public school system, his progress is re-evaluated as a part of his Individualized Education Plan—a set of guidelines designed to help people with disabilities reach their educational goal.

This year, as part of the test, the woman delivering the questions asked him, “You find out someone is getting married. What is an appropriate question to ask them?”

My brother’s answer: “What kind of cake are you having?”

The proctor shook her head. No, she said, that’s not a correct answer. Try again. He furrowed his brow in the way we have all learned to be wary of—it is the face that happens before he starts to shut down—and said, “I don’t have another question. That’s what I would ask.” And that was that. He would not provide her another question, and she would not move on without one. He failed that question and never finished the test.

A test does not have to be like this. Other measures, like Raven’s Progressive Matrices or the Test of Nonverbal Intelligence (TONI), avoid these behavioral and language difficulties. They ask children to complete designs and patterns, with mostly nonverbal instructions. And yet they often are not used.

The average child will score around the same percentile for all these tests, both verbal and nonverbal. But an autistic child will not. Isabelle Soulieres, a researcher at Harvard University, gave a group of autistics both WISC and the Raven test to measure the difference between the two groups. Although she expected a difference, she was surprised at just how big the gap was. On average, autistic students performed 30 percentile points better on the Raven test than on WISC. Some kids jumped 70 percentile points. “Depending on which test you use, you get a very different picture of the potential of the kids,” she says. Other studies have confirmed this gap, although they found a smaller jump between tests.

The “high functioning” autistic children, with the least severe version of the disability, were not the only ones to score higher. Soulieres conducted a study recently at a school for autistic children considered intellectually disabled. Using the Raven test, she found that about half of them scored in the average range for the general population. “Many of those who are considered low-functioning—if you give them other intelligence tests, you will find hidden potential,” she says. “They can solve really complex problems if you give them material that they can optimally process.”

What this means, she says, is that schools are underestimating the abilities of autistic children all across the spectrum. The widespread use of the WISC in schools has helped set expectations of autistic kids too low—assuming that they will not be able to learn the same things that the average child can. Based on the test results, people come to the conclusion that autistic children cannot learn, when perhaps they do not learn the same way other people do.

The hidden potential of autistic people seems to fall in common areas—tasks that involve pattern recognition, logical reasoning and picking out irregularities in data or arguments. Soulieres describes working with an autistic woman in her lab who can pick out the slightest flaws in logic. “At first, we argue with her,” Soulieres laughs, “but almost each time, she’s right, and we’re wrong.”

Recognizing these talents, rather than pushing them aside to focus on the drawbacks of autism, could benefit not just autistic people, but everyone else as well. Mottron chronicles how much better his science got by working with his autistic lab partner. I got far higher marks on my homework than I would have without Alex, even though his corrections were sometimes infuriating. And many think their potential extends beyond science to all professions, if given the right chances.

Just because a test says someone has potential, that does not mean it is easy to realize. My brother Decker’s teachers are convinced—and the tests confirm—that he has hidden potential. But in class, he often falls behind when trying to listen to instructions and gets frustrated when trying to catch up. “It doesn’t mean that it’s easy for them in everyday life, or that it’s easy for their parents or teachers,” Soulieres says. “But it shows that they have this reasoning potential, and maybe we have to start teaching them differently and stop making the assumption that they won’t learn.”

More and more people are starting to wonder what gems might lie hidden in the autistic brain. And if my brothers are any indication, if we keep looking, we will find them.

This article was first published on Scientific American. © 2011 ScientificAmerican.com. All rights reserved. Follow Scientific American on Twitter @SciAm and @SciamBlogs. Visit ScientificAmerican.com for the latest in science, health and technology news.

1 November 2011, 09:03 (saya mengirim SMS kepada mama Lukman, salah seorang murid SD kami yang memiliki kecenderungan autistik)

Mama Lukman, mau mengajarkan konsep kurban ke Lukman? Tapi lebih ke sensasi membeli kambing, merawat, mengenali bagian kambing, dan menyerahkan ke mesjid ya, bukan pemotongannya.

1 November, 09:07 (setelah dibalas oleh Mama Lukman: “Mau, tapi gimana caranya?”)

Kalau berkenan, boleh kambingnya di sini? Tapi kalau memang mau memotong kurban ya, dan tidak ada tempat khusus yang dituju.

1 November, 09:14 (setelah dibalas lagi, bahwa akan ditanyakan ke papanya. Mama Lukman menambahkan bahwa Reza, kakak Lukman, mungkin akan senang saja bila kambing mereka dikirim ke Tetum, sekalipun papa mamanya belum pernah berkurban di sekolahnya. Reza ketika TK bersekolah di Tetum, dan kini kelas IV SD di Depok).

Iya, seandainya bisa buat Lukman, mungkin akan berarti, karena dia lagi menikmati bersama teman. Meskipun akan ada kambing yang direncanakan akan “dibeli” oleh Kelas Merkurius, akan berbeda kalau Lukman “punya kambing”. Di rumah dia mendengar diskusi tentang hewan kurban. Saya terinspirasi ini setelah lihat Lukman begitu tekunnya menggambar di antara Pandya dan Raffi.  Dan tadi saya berpapasan dengan Lukman saat berjalan bersama teman-temannya ke kebun untuk bermain musik.

(melakukan kegiatan motorik halus, ataupun kegiatan bersama kelompok adalah “sesuatu” dengan proses panjang, dan tidak mudah, bagi Lukman sejak dia berada di Kelas Darat, empat tahun lalu).

1 November 2011, 09:28 (setelah dibalas oleh Mama Lukman bahwa beliau senang Lukman mulai berteman, dan beliau akan memberi jawaban ASAP setelah bertanya kepada papa Lukman).

Ya, seandainya aja ya …

1 November 2011, 09:33 (saya lupa jawaban mama Lukman karena sudah saya hapus)

Ya, tadi saya tanya Kak Indah (terapis kami) apakah momen ini baik dipakai untuk memperkenalkan kurban kepada Lukman, dan Lukman mengisi pertemanan itu dengan sesuatu yang dia punya. Kak Indah matanya berbinar-binar setuju:). Mudah-mudahan papanya setuju juga, ya.

1 November 2011, 09:51 (mamanya bilang, beliau berbinar-binar juga matanya)

Lukman bikin semua jadi semangat:) Ngebayang dia dan teman-teman naik angkot (carter), terus pilih kambing, bayar, bawa kambing pulang. Tapi sebelumnya sudah ada nego harga sama tukang kambing dan sudah dipilih juga kambing yang akan dibeli, Beli kambingnya di Timbul III, soalnya di tempat yang dulu tidak jualan lagi.

(Pada realisasinya, kami memindahkan tempat penjualan kambing ke lokasi yang tidak terlalu jauh dan tidak banyak kendaraan lalu-lalang. Mereka pun cukup berjalan satu kilo, dan tidak perlu naik angkot).

1 November 2011, 10:29 (mama Lukman bilang, “Ow lutuna… Semangat deh Lukman.” )

Alhamdulillah. Kelas Merkurius beli hari Kamis. Tadi Lukman sudah minta belajar dengan control cards tentang bagian-bagian kambing. Sayang mintanya pas mau berangkat ke mesjid, jadi belum terlaksana.

1 November 2011, 17:31 (mama Lukman mengirim SMS bahwa Reza senang kambing mereka dikirim ke Tetum, dan dia akan diajak menengok sepulang sekolah).

Waw, Reza kapan mau datang?

1 November 2011, 17:47 (Mama Lukman bilang hari Kamis sore kalau tidak hujan)

Kambing Lukman dibeli hari Kamis, dan Jumat dibawa ke mesjid. Kalau datang Kamis bisa dilihat di sini. Biarpun datang malam, ditunggu:)

1 November 2011, 17:49 (Mama Lukman memastikan Reza akan dijemput dari sekolah dan langsung diajak ke Tetum)

Siip … Kambingnya atas nama siapa? RezaLukman? Hari Kamis saya tunggu ya.

1 November 2011, 18:06

Oke saya tunggu ya.

2 November 2011, 06:26 (setelah Mama Lukman mengirim SMS bahwa Reza ingin domba. Mamanya mengatakan bahwa kalau ada stok, akan dibelikan domba)

Oke, Dek Reza!

2 November 2011 20:39 (begitu pulang dari aktivitas panjang, saya teringat kambing Lukman).

Tadi Lukman sudah mulai sounding “kambing aku”, dan cari-cari Kak Samsul (Ketua Panita Qurban). Jadi, perlu diganti domba gak ya? Saya takut jadi kabur antara kambing dan domba buat Lukman. Tadi sih saya sudah pesan untuk dicarikan domba yang tanduknya melingkar.

2 November 2011 21:57 (Mama Lukman membalas: “Oh hihihi kayanya nggak masalah, boleh kambing. Sudah dibilangin ke Reza kalau nggak ada domba boleh kan diganti kambing & Reza setuju.”)

Tadi Lukman bilang “Kami mau membeli kambing” (kadang Lukman memakai kata ganti “kami” sebagai pengganti “aku”) dan peluk Kak Wiwik (gurunya).

Mama Lukman membalas, “Waduuuh senengnya… Kak Endah, jadi kepingin difoto boleh nggak? (biasa deh, maniak dokumentasi) Seandainya boleh, saya menunggu ditempat beli kambingnya, gitu?” Saya balas, boleh.

Apa yang terjadi pada Lukman menunjukkan bahwa dia telah menyerap konsep  ”memiliki” kambing. Berbeda dengan tahun lalu: dia diam saja dan hanya menggandeng lengan gurunya saat bersama teman-temannya membeli kambing.

Pada hari Kamis, ketika datang ke sekolah dia mengatupkan jari-jarinya dan mengatakan kepada setiap kakak yang ditemuinya, “Mohon boleh membeli kambing.”

Ya, tentu boleh, Lukman …. Momen Idul Adha ini pemahaman Lukman naik setapak lebih tinggi …. Memang belum sampai “membeli” (karena tempat jual beli yang berbeda daripada yang biasa dikenal Lukman, apalagi sampai mengaitkannya dengan kurban. Tapi ada hal penting: Lukman menjalin hubungan emosi yang dekat dengan hewan kurbannya, lebih dekat daripada biasanya …. Dia mempersiapkan diri untuk membeli, dia memilih domba daripada kambing (yang sebetulnya memang dipersiapkan untuknya), dia berjalan bersama-sama teman ke kandang hewan di lapangan, dia berjalan membawa tali pengikat domba (walaupun dibantu), dia memberi makan domba di sekolah, dan sorenya dia kembali lagi ke sekolah untuk menunjukkan dombanya kepada kakaknya.

Kalau Lukman belajar mengenal hewan kurban, saya belajar tentang bagaimana memperkenalkan hewan kurban kepada anak dengan kecenderungan autistik. Tidak mudah, tetapi indah dan penuh tantangan, dengan hipotesis yang patah di lapangan, dan menuntut saya untuk meraih kesabaran Ibrahim.

Note: comment saya untuk blog Ibu Endah:

Kalau tidak dikirimi sms oleh kak Endah untuk berqurban di Sekolah Tetum Bunaya, mungkin event Idul Adha kali ini akan berlalu sama seperti tahun-tahun sebelumnya: kami mengirim dana kekampung halaman dan tidak ada keseruan seperti yg terjadi kemarin.

Senang sekali melihat Lukman sudah lebih berkembang lagi, bisa ikut menikmati kegiatan bersama teman, sudah lebih ‘ngeh’ dengan kegiatan berqurban. Begitu juga dengan Reza, dia jadi ikut semangat dan senang memiliki domba berdua adek Lukman. Kunjungan ke Sekolah Tetum di sore hari itu membuat keduanya gembira sekali.

Terimakasih kak Endah untuk idenya, dan terimakasih Sekolah Tetum Bunaya yang selalu memanfaatkan setiap event untuk melibatkan anak-anak dalam setiap kegiatannya…

1. SIBLINGS NEED COMMUNICATION THAT IS OPEN, HONEST, DEVELOPMENTALLY APPROPRIATE, AND ONGOING. Parents may need to deal with their own thoughts and feelings before they can effectively share information with siblings. Children may show their stress through their withdrawal or through inappropriate behaviors. Siblings may be reluctant to ask questions due to not knowing what to ask or out of fear of hurting the parent. While doing research on siblings, Sandra Harris found that developmentally appropriate information can buffer the negative effects of a potentially stressful event (Harris, 1994).

2. SIBLINGS NEED DEVELOPMENTALLY APPROPRIATE AND ONGOING INFORMATION ABOUT THEIR SIBLINGS’ ASD. Anxiety is most frequently the result of lack of information. Without information about a siblings’ disability, younger children may worry about “catching” the disability and/or whether they caused it. The young child will only be able to understand specific traits that they can see,
like the fact that the sibling does not talk or likes to line up their toys.

3. SIBLINGS NEED PARENTAL ATTENTION THAT IS CONSISTENT, INDIVIDUALIZED, AND CELEBRATES THEIR UNIQUENESS. Many families make a major effort to praise and reward the child with the disability for each step of progress. This same effort should be considered for the siblings. Self-esteem is tied to this positive recognition by parents. Remember to celebrate everyone’s achievements as special.

4. SIBLINGS NEED TIME WITH A PARENT THAT IS SPECIFICALLY FOR THEM. SCHEDULE SPECIAL TIME WITH THE SIBLING ON A REGULAR BASIS. Time with the sibling can be done in various ways such as a 10 minute activity before bed or a longer period several times a week. The important thing is to schedule specific c “alone” time with a parent that siblings can count on.

5. SIBLINGS NEED TO LEARN INTERACTION SKILLS WITH THEIR BROTHER OR SISTER WITH ASD. Sandra Harris & Beth Glasberg (2003) offer guidelines for teaching siblings play skills to interact successfully with their brother or sister with ASD. Go slow and praise the sibling. Toys and activities should be age appropriate, hold both children’s interest and require interaction. Teach siblings to give instructions as well as prompts and praise to their brother or sister (Harris & Glasberg, 2003).

6. SIBLINGS NEED CHOICES ABOUT HOW INVOLVED THEY ARE WITH THEIR BROTHER OR SISTER. Be reasonable in your expectations of siblings. Most siblings are given some responsibility for their brother or sister with a disability. Show siblings you respect their need for private time and space.

7.SIBLINGS NEED TO FEEL THAT THEY AND THEIR BELONGINGS ARE SAFE FROM THEIR BROTHER OR SISTER WITH AUTISM. Some children with ASD can be destructive and hard to redirect. They can also be quick to push, bite, or engage in other challenging behaviors with the sibling as a target. Siblings must be taught how to respond in these situations. Parents should make every effort to allow siblings a safe space for important items and a safe retreat from their siblings’ aggressive behaviors.

8. SIBLINGS NEED TO FEEL THAT THEIR BROTHER OR SISTER IS BEING TREATED AS “NORMAL” AS POSSIBLE. Explain differential treatment and expectations that apply to the child with a disability. As they mature, siblings can better understand and accept the modifications and allowances made for the brother or sister with a disability. Make each child’s responsibilities and privileges consistent and dependent on ability. Be careful not to underestimate the ability of the child with ASD.

9. SIBLINGS NEED TIME TO WORK THROUGH THEIR FEELINGS WITH PATIENCE, UNDERSTANDING, AND GUIDANCE FROM THEIR PARENT(S) AND OR A PROFESSIONAL, IF APPROPRIATE. Listen and acknowledge what is being said. Validate the sibling’s feelings, both positive and negative, as normal and acceptable. Sharing your positive and negative emotions appropriately is also important. Remember parents are important models of behavior. Help siblings learn ways to cope with and manage their emotions.

10. SIBLINGS NEED OPPORTUNITIES TO EXPERIENCE A “NORMAL” FAMILY LIFE AND ACTIVITIES. If needed, draw on resources in the community both informal and formal. Some families are uncomfortable in asking for help. For the sake of everyone in the family, find and use resources available such as respite care services and other community programs for persons with disabilities and their families. Most families would be overwhelmed without some breaks from the ongoing demands of caring for children with a disability. Siblings and parents need opportunities for activities where the focus of energy is not on the child with special needs.

11. SIBLINGS NEED OPPORTUNITIES TO FEEL THAT THEY ARE NOT ALONE AND THAT OTHERS UNDERSTAND AND SHARE SOME OF THE SAME EXPERIENCES. Siblings need to know that others are growing up in similar family situations. Opportunities to meet other siblings and/or read about other siblings are very valuable. Some might benefit t from attending a sibling support group where they can talk about feelings and share a common understanding while also having opportunities for fun.

12. SIBLINGS NEED TO LEARN STRATEGIES FOR DEALING WITH QUESTIONS AND COMMENTS FROM PEERS AND OTHERS IN THE COMMUNITY. Parents should help prepare siblings for possible reactions from others toward their brother or sister with a disability. Make sure the sibling has facts about ASDs. Discuss solutions to possible situations.

When I started my teaching career in my first school, I was filled to the brim with principles and ideas which I was convinced would enable me to become the teaching success of the century. Training college had taught me all the modern techniques: Psychology, Sociology and all the rest. In particular, I was convinced of the value of honesty and truth in education. There was simply no point in beating around the bush — the children would have to be honest with me, and I would be the same with them.

And so when it came to the annual report cards, I took it for granted that every parent would value my refreshingly frank comments. If a child had been disruptive and had wasted her time I said so, bullies were exposed, cheaters revealed and the angelic elite duly praised. Then two weeks later came the follow up… parents evening. This was the chance to explain my Report Card comments in full, and, no doubt, enjoy the deep gratitude which would be bestowed upon me by satisfied parents.

Now that I have school children of my own, I look back on the boyish and confident grin with which I greeted Mr and Mrs Proctor with disbelief and amazement. I now know that if any teacher dares to criticise any of my almost totally perfect offspring, it is only because they are mentally defective sadists, Anti-Semitic, or Anti-Semitic mentally defective sadists. Mr and Mrs Proctor seemed to have a similar view of me that night. Most of the parents did.

But there was something I learned at training college that never let me down. We were told of a primary school which had been contacted by their local University. The University explained that they had developed a new test which was able to detect children who were “Late Developers.” No matter what the academic record of the children had been till now, this test would show which children were about to come to life and start doing really well.

The University people turned up and proceeded to test all the school’s children. Teacher after teacher was amazed to discover that the pupils they had written off as being hopeless would within the next sixth months blossom and start doing well.

The University neglected to tell the school that they were making the whole thing up, and had given the children a normal I.Q. test. They simply selected the names of the lowest scoring children, and told their teachers that they were about to do well.

The amazing thing was that every one of the children did start doing well. Because the teachers started to “believe” in them and put in more effort with them, they actually became late developers.

Very often, people and particularly children don’t live up to our expectations. When we change our attitude towards them we often learn that they didn’t let us down… we let them down.

Do you, as a mom believe in your children more than anyone else—even more than they believe in themselves? Are you strict, but loving or just strict with not so much loving? Or are you loving and rewarding, but not strict? Is your goal to help your children do the best they can with what the children have to offer?

What happens when Sacramento mothers respond to the recent Wall Street Journal articles by Amy Chua, “Why Chinese Mothers Are Superior?” According to the Wall Street Journal article, Amy Chua is a professor at Yale Law School and author of “Day of Empire” and “World on Fire: How Exporting Free Market Democracy Breeds Ethnic Hatred and Global Instability.” The Wall Street Journal essay is excerpted from “Battle Hymn of the Tiger Mother” by Amy Chua, to be published this week by the Penguin Press, a member of Penguin Group (USA) Inc.

Is it an ethnic custom in Sacramento or anywhere else to demand excellence in school work from your children at all grade levels? Also check out the website, “The Tiger Mother Responds to Readers.” The term “Chinese Mother” also applies to Japanese and Korean mothers.

The reason many people in Sacramento want to read this Wall Street Journal article/essay is because in every university in California, most Asian students do very well. Is it because their mothers make sure they get all straight ‘A’s by telling them they dishonor their family if they get lower grades? Are the children prodded into getting high grades by being called names that would intimidate most people not used to having demanding parents who demand the best from their offspring? What do you Sacramentans think?

Read the article link first, and then compare the technique many Asian mothers use to coax their children into doing excellent work in school, including working hard to receive high grades in college. But what does this do to the children’s creativity and spark to learn other than by rote? Is there a secret to the children’s success?

Usually, you won’t find many Asian students majoring in drama and musical theater or education. But you may find those not majoring in the hard sciences, math, engineering, medicine, and economics actually majoring in classical music such as playing the violin or piano.

And with their superior spatial abilities developed by writing those Chinese or Japanese and Korean lettering characters, or using an abacus to do speed mathematics in elementary school, you’ll find superior illustrators, engineering designers, software developers, animation artists, and architects. Yes, there are some novelists who do major in creative writing, but usually they’re women who write when young do write best-selling novels.

So is it the mothers who can be congratulated? Or is it the inherited intelligence of the children that would have majored in what they chose with or without being told what to do? According to the Wall St. Journal article, “… the vast majority of the Chinese mothers said that they believe their children can be “the best” students, that “academic achievement reflects successful parenting,” and that if children did not excel at school then there was “a problem” and parents “were not doing their job.” Other studies indicate that compared to Western parents, Chinese parents spend approximately 10 times as long every day drilling academic activities with their children. By contrast, Western kids are more likely to participate in sports teams.”

For Sacramento mothers, the problem is what to do if the child wants to be in a school play or participate in sports. What if the child has an average IQ score or is told he or she is 10 to 20 points below average and is told his or her intelligence and capabilities is average? Do intelligence tests mean anything? Or what can the average Sacramento mother do if a child is learning disabled or always has trouble with school work, no matter how hard he or she tries? Does a mother just tell the child to “do the best you can with what you have?”

Instead of telling a child “you’re garbage” if the child gets a low grade, what if a Sacramento mother tells the child with the low grade, “you’re too good for that low grade?” What if a mother says, the real world out there will reward you for success in school, but only if you have the ‘right’ major which is changeable as the economy’s need for your skills change?

How would you talk to a child who gets a low grade? Would you reward the child for getting the best grade he or she can with whatever abilities he or she has? Or would you call the child names to make the child feel he or she has disgraced the family’s honor or reputation in the eyes of other family members or the public? After all, the outcome any parent wants is for the child to succeed.

As a Sacramento mother, would you tell the child he or she would be rewarded for high grades with a gift such as a musical instrument or a scholarship? Or would you demand excellence from a child you know has limited intelligence to succeed in college? As another choice, would you ignore outside advice that your child has limited academic intelligence and instead steer your child into learning how to make a lifetime income from a hobby?

After all, almost every mom in Sacramento wants her child to grow up to be financially independent, pull his or her own weight, and pay back to the community what the community has given the child in the way of economic success. What kind of excellence do you demand from your child, here in Sacramento, regardless of any ethnic customs regarding success in school or in the world of work? What comes first, the health of your child or high grades as a stepping stone to financial independence?

Sore ini lengan kiri saya bengkak. Ya, tadi pagi saya digigit Lukman, anak spesial di sekolah kami. Dia menggigit saya ketika saya berusaha mengurai jari-jarinya yang mencengkeram jari seorang kakak sambil menangis. Begitu datang dia memang menangis keras sambil mengatakan, “Aku tidak mau sekolah.”

Ibunya langsung pulang karena beliau pasti sudah mafhum bahwa cara terbaik ya meninggalkan anak sekalipun dalam keadaan menangis. Mungkin itu adalah trik si anak saja. Dari nada tangisnya memang tampaknya ada sesuatu di rumah, tetapi tidak berarti tidak sekolah kan …..

Pembiasaan adalah hal yang kami tanamkan kepada setiap anak di sekolah kami. Sekali mereka diizinkan tidak bersekolah bukan karena sakit, kami khawatir itu akan melekat di benaknya. Dan dengan tangisan, kami akan meluluskan permintaannya.

Maka, sekalipun dari gerbang hingga pintu masuk, Lukman terus menangis, seorang kakak tetap menggiringnya ke dalam.

Dan saya kena gigitannya ….

Tidak sakit, namun lama kelamaan menjadi bengkak dan lengan saya pegal. Mungkin ada aliran darah yang terhenti di sekitar gigitan itu.

Rasa sakit itu terlupakan ketika datang seorang tamu.

Selagi saya berbincang dengan tamu, terlihat Lukman di depan pintu membawa minyak tawon. Oh kakak kelasnya sudah berhasil menenangkan dia, dan pasti kemudian memintanya membawakan obat untuk saya.

Dia ragu untuk masuk, tapi saya beri kode, setelah minta maaf pada tamu. Kemudian Lukman ikut duduk di karpet, dan membuka tutup botol minyak tawon.

“Kak Endah, aku obatin,” katanya.

“Jangan kena lukanya ya, Lukman, nanti perih. Bagian yang bengkak saja.”

Telunjuknya yang kecil mengoleskan minyak tawon di lengan saya.

Kemudian saya tanya, “Kenapa tadi pagi Lukman menangis?”

“Aku tidak mau sekolah,” jawabnya.

“Kenapa tidak mau sekolah?”

“Kami tidak mau ke Kelas Merkurius,” jawabnya. Tampaknya dia sedang senang mengucapkan “kami” sebagai pengganti “aku”. Jawabannya mungkin merupakan penjelasan bahwa di sekolah ada Kelas Merkurius, nama kelasnya (kelas 1 SD kami). Tapi tampaknya sulit bagi Lukman untuk menjawab pertanyaan “mengapa” secara berlapis.

Dia menatap saya dengan mata masih basah oleh air mata, dan mulut terbuka, menampakkan gigi kelincinya. Saya pun tertawa geli, dan dia bertanya, “Kenapa kamu tertawa?”

“Lukman lucu.”

Dia tersenyum malu, dan menunduk.

“Sudah Lukman, sudah sembuh nih. Terima kasih, ya.”