I just noticed I have written anything since March,  to which I mentally commented, "Good boy." This isn't a blog, it's where I spout off, spew, endlessly ramble about things no one is interested in. So, ignoring it has been a good thing.

If you are reading this, I don't care. In fact I feel a twinge of pity that your life has been reduced to reading such crap such as mine (of which you likely have other unsavory habits and activities). 

Don't expect wisdom, knowledge or anything resembling a retelling of reality. If it happens, it's purely accidental... Pay it no mind.

Well, that about covers the sum-total of anything I think I thought thoughtlessly.

See ya all again when the spirit moves me or my bowels need a good cleansing.

Freedom?

The following was written after reading that the Non-voting Delegate to the House of Representatives from the District of Columbia stated in a public hearing that the committee on Government Affairs had no right to know what goes on in the Executive Branch. Well, as they are fond of saying in Congress, I'm going to revise and extend my remarks from that original paragraph of my comments.

To read that a Democrat, or Democrats in general, believe that We the People don't have a right to know what goes on in any branch of government, Congressional, Executive or the Courts, has either not read the Constitution or its supporting document, the Federalist Papers, or is totally ignorant that what we now have is a representative democracy, or Federal Republic, that is founded, first and foremost, on the CONSENT OF THE GOVERNED!

The government's only reason for existence is to serve the citizen's needs for fundamental freedoms and rights. It exists for no other reason. Therefore, We the People, have a right to know what our government is doing except in terms of verifiable national security interests. Only the people, the citizens of the United States of America, have any true right to privacy.

When serving in a public capacity, for the public good, those in whom we place our trust into guard our freedoms and rights, must willing tell the citizens about everything they are doing. Government, in of itself, has no right to be trusted in any unqualified manner.

The Bill of Rights was written to ensure the citizens right to control their own destinies, not for the government to take away any of our rights, liberties and freedoms.

The Democratic Party appears to have embraced the political concepts of Fascism and Totalitarianism. They want and desire absolute control of the citizens of America and willing to go to any ends to make that happen. I believe that all truly sentient and moral people reject that concept, and will make their voices heard in the Corridors of Power that power does not reside with government but with the people who constitute it.

We will not lay down like dogs and allow anyone one, or group, within our government to trample our liberties! The original colonists of Connecticut got right with their motto, "Live Free or Die"! Does anyone here want their rights, liberties and freedoms taken from them without their full CONSENT? If you do, then I do fear for our nation, our Republic, that it too shall perish in the ashes of history.

Our Republic was never designed to force its citizens to crawl on their bellies to the Seats of Power to beg for their rights, liberties and freedoms already guaranteed to them in the document all “employees” of the government are sworn, by solemn oath, to preserve, protect and defend, being the Constitution of the United States of America.

In recent years, the past 30 or so, the politicians who long for power connive, conceal and pretend to be freedom loving “servants” of the people who would elect them, while in their heart of hearts scheming to take from the people as much power and money as they possibly can for their mere conceit and for those who gave them money to buy their position. What more can be said then that they are all liars, thieves and crooks. Not one of them deserve our trust. They should be seen for what they are, not what they pretend to be.

It's not just your average politicians are this way, but our courts lead by judges in whose conceit are all little dictators of all the survey when they put on their  black robes. They are little people who would be gods, sitting behind their high benches, passing out punishments and rewards on whims. They know that most laws are made by and for their fellow lawyers, not for the “citizens” who are all guilty when they come into their domains and those “criminals” must prove themselves totally guiltless, and the wealthy must prove themselves worthy of more rewards by how much they donated to the judge’s campaigns. They don't care one whit for that rotting parchment in the nation’s Capitol, only in how cleverly they can twist and distort its meaning to suit their personal beliefs, if they truly have any.

No, dear citizens, we no longer live in the land of truth and justice, but in a prison barge built on lies some of us have learned in drinking the KoolAid of the two party system of liars thieves and crooks. The Bill of Rights is just as rotted as the rest of the decaying Constitution. Our rights, liberties and freedoms have been eroded right before our eyes and with the wink and nod of assent of enough of us to allow this to come to pass. It seems many of us, enough to make it so, are more content with their toys and games and sugary treats so long as others put their lives on the line so they don't have to put out the effort of citizenship.

So what are we left with? Nothing? Or are enough of us who believe in a constitutional representative democracy willing to stand on their hind legs and shout “ENOUGH!”, no more. We want OUR government back, the one we used to read about in fairy tales called history. Are any of you brave enough? Have nothing to lose, but everything to gain? Are you strong enough to stop these “politicians” and “judges” and “bureaucrats” (those who actually control everything from the shadows)?

I only have questions. It's up to every citizen to come up with their own answers to the queries I pose. I'm certainly not going to force your eyes and minds to become open to the putrefied state of things I've described. To smell the decay of the rotted corpse of the nation. It's up to each of you now.

So ends my stand of defiance to the a State of the Nation.

Invisible

When I tell people I'm disabled, they look at me astonished, because from the outside there doesn't seem to be anything wrong with me. Two arms, two legs, I can see about me, I can hear every word that is said , but I am disabled, for though I hear, I do not understand, for though I see, it's all confusion.

You all take for granted the communication you share among yourselves, not realizing it's not just words you use. You flap your arms about, make strange faces, sit in odd positions, inflect your voices in coded fashions. You touch, when you stand you dance a strange dance, and none of it makes sense to me. 

I don't like to be touched. I don't like fluorescent lights. I don't like all the confusion of crowds, so many different conversations going on around me until I'm forced by the primitive flight or fight, to run away. Such confusion. How do you make sense of anything?

Although you all look human like me, I feel cut off, lost in an alien world where everyone expects me knows what's going on. I can make out some of what you are all trying to say, if you say it slowly, not too close, and without any gesticulations, facial ticks, body postures, all those non-verbal communications things you use. 

Yet you don't see my disability because I'm invisible. I've been called a "blank wall" many times. My conversation is a monologue, carrying only the thoughts I have, without connection to you, though I'm trying to understand.

So it's easier for me to just stay away. Turn down invitations until there aren't any anymore. Closed off in my the world I can understand, taking in information piece meal, tiny bites, from the distant room where I live. 

I like alone. 

It wasn't always that way. There was another heart in my world at one time, but that heart stopped beating and she is gone, now reduced to a box of ashes, the base chemical residue without water or form or love or gentleness or understanding. Just a pile of nothing. She speaks to me when I sleep sometimes. Nonsensical words of dreams without connections. She was my connection to your world, at least when she was around. Without her, I was back to alone. But she always came home. Then she left and a box was what I was handed. She walks through my dreams now. It is her. I can even smell her hair when she puts her head under my chin.

I like alone.

I don't try to deal with her gone. I'm still waiting for her to come through the door or out of the bathroom or kitchen. But I don't dwell on it when she doesn't anymore. Just dreams.

I'm alone.

In the beginning I had my mother. Then I had a little girl I married when we were both too young and stupid. Then there was the tire store where I met her. My life was full for 3 decades and 4. Florida, Texas, and back again. 

Alone.

You all ignore me because I don't fit your idea of disability. It crushes my soul not to be understood or have anyone even trying. It runs counter to everything I've been told about humans in general. Then, again, I'm not human, at least not a human as humans understand the term.

Being alone isn't in it itself a totally bad state to be in. No one bugs you with stupid questions. They just look at me with blank expressions (actually, to me, all your expressions are blank). Then just turn or get up and walk away. Once again invisible. Standing there surrounded by those I can't understand or get close to.

I'm clumsy and awkward. My words trip over each other incoherent. My thoughts twisting around the connections I can never express properly, though I do know the answers.

Alone protects, shields, isolates from pain and loss and never again being touched.

Now old, gray, fading against each sunrise, growing darker at the sunsets. I have had my time and the sun no longer warms me. The sounds of life is a discordant, shrill, spreading into the unknown distant future closing in.

There are so many like me, but for different reasons. In that I'm not alone in that condition only the circumstance. I now choose the loneliness over companionship. I was lucky, in a way of having found a true love, though I never knew it at the time or appreciated until it was empty.

No dreams or wishes, please. Just leave. Leave. Please. Shadows have no need of sunlight or darkness. Just pass by and do not look. My soul left so long ago that I... Don't know. I don't care. Blow it all up. Tear it all apart. It would be a better world and  will fill again with goodness when I've...

Some ask me, "Why Xuěbào?" Some ask what it is. It's the Chinese name for the Snow Leopard. Typical of all cats, she is an ambush predator. On the outside I look weak and frightened, and on the inside a big part of me is. But buried deep down, in a place I rarely reveal is a very dark place. That's where she waits. The "Ghost of the Mountains" is another name. She blends in with her surroundings. 

I blend in. I'm invisible. No one really looks at me. I'm nothing. Just  some old, white guy with a gray beard and ponytail. I don't count. I have nothing worth bothering about. So I just watch. Don't really focus on anything or anyone. But people do fascinate me. All those odd gyrations, facial ticks, strange forced laughs. The are so bland. So ordinary. Such easy prey if anyone was hunting. Though she lies in wait, she's not looking for prey. She only defends. And, like me, she likes alone. 

Alone doesn't hurt, because there's no one who can hurt me. Alone doesn't care because there's so very few I care about. Other than them, there's alone. Distant from anything or anyone who could hurt me. Someone tries and there she is, a big surprise.

Invisible.

I try not to intrude unless intruded upon. A distant relation (in mileage not relationship) has started conversation again. I learned some things I didn't want to know, some that anger me and others I could have never seen. She was trying to make contact for someone else. Maybe he knows. I hope one day he’ll understand, but he’ll never truly be close. Too much pain. Too much lost time (I often wonder where lost time goes). My love never waned, but I can't make it right. That one “woman” is a destroyer of love. She even chose that route and succeeded in her mission. And it was all for arrogance. 

She's even pushed him away as she did me. Blaming him for her failure and inability to understand anything or anyone different from her norm. She married again and had another just to make the final push final. And all because of a name, a different way of thinking, just different which she hates. I've never really understood hate. Anger, rage, yes, but not hate. Why did she send him away instead of trying to understand. For that I can't forgive her because I wasn't allowed to be there to try and explain. She, and those who made her, built that wall of hate. Terrible, dreadful, final.

Invisible.

To those who won't or can't understand I've given up trying. It's always confused me, this secret talking, of eyes, and faces and bodies. So stop. I'm not here. I do not exist in your universe. But I continue from shadow to shadow. Totally…

Invisible…

Adults with autism are left to navigate a jarring world

From Science Daily:

Adults with autism are left to navigate a jarring world

Researchers turn attention to a growing population of adults with autism spectrum disorders

BY SIRI CARPENTER 1:30PM, FEBRUARY 10, 2015

“I don’t look like I have a disability, do I?” Jonas Moore asks me. I shake my head. No, I say — he does not. Bundled up in a puffy green coat in a drafty Starbucks, Moore, 35 and sandy-haired, doesn’t stand out in the crowd seeking refuge from the Wisconsin cold. His handshake is firm and his blue eyes meet mine as we talk. He comes across as intelligent and thoughtful, if perhaps a bit reserved. His disability — autism — is invisible.

That’s part of the problem, says Moore. Like most people with autism spectrum disorders, he finds relationships challenging. In the past, he has been quick to anger and has had what he calls “meltdowns.” Those who don’t know he has autism can easily misinterpret his actions. “People think that when I do misbehave I’m somehow intentionally trying to be a jerk,” Moore says. “That’s just not the case.”

His difficulty managing emotions has gotten him into some trouble, and he’s had a hard time holding onto jobs — an outcome he might have avoided, he says, if his coworkers and bosses had better understood his intentions.

Over time, things have gotten better. Moore has held the same job for five years, vacuuming commercial buildings on a night cleaning crew. He attributes his success to getting the right amount of medication and therapy, to time maturing him and to the fact that he now works mostly alone.

Moore is fortunate. His parents help support him financially. He has access to good mental health care. And with the help of the state’s division of vocational rehabilitation, he has found a job that suits him. Many adults with autism are not so lucky.

Scientists are beginning to take note, but their understanding of how best to help adults with autism is paper thin. Of the more than $400 million that the United States spends each year on autism research, the vast majority is for two avenues of study: genetics research to find the causes and a cure, and studies on early diagnosis and intervention in children. Few studies have examined treatments for adults.

Accepted approaches for treating children with autism range from brief interventions for addressing specific challenges like recognizing facial expressions to comprehensive behavioral training programs that involve parents, teachers and peers.

“When you look at early intervention for autism, there are lots of different models, and we have a pretty good sense of evidence-based practices for young children with autism,” says Leann Smith, a developmental psychologist at the University of Wisconsin–Madison, whose research focuses on adolescents and adults  with autism plus their families. “There isn’t anything analogous to that for adults,” she says.

Activists like Temple Grandin and others are making the case that adults with autism bring important qualities to society. And in the last few years, public and private agencies that fund autism research have begun funding a growing cadre of researchers to develop and test therapies for adults with autism — particularly high-functioning adults. 

“I really do expect to see huge changes in terms of what we know about how to support adolescents and adults with autism over the next 10 years or so,” says Julie Lounds Taylor, a Vanderbilt University developmental psychologist who studies the transition to adulthood for people with autism. “I would not have said that two years ago.”

Finding their place

The term “autism spectrum disorder” includes a suite of neurological conditions that range in severity and include impairments in communication and social interaction, difficulty with regulation of emotions and repetitive or obsessive behaviors and interests. About half of children diagnosed with an autism spectrum disorder are “high functioning” like Moore, meaning they have average or above-average intelligence. No drugs have been approved to treat the core symptoms of autism in children or adults, though many people with autism take medications for conditions that can occur alongside autism, such as depression, anxiety and irritability.

There are no reliable estimates of the number of adults with autism. But the prevalence of children diagnosed with autism has spiked in the last two decades. In 2000, the U.S. Centers for Disease Control and Prevention estimated that 1 in 150 children had an autism spectrum disorder. The agency’s 2014 estimate is a startling 1 in 68. The reasons for the increase aren’t fully understood, but researchers believe it is partly due to improved detection.

Those children will eventually reach adulthood and will still need support services as they try to find their place in the world.

One might expect that people with autism who are most high functioning would fare best in the adult world. But paradoxically, those without an intellectual disability are most likely to falter at the precipice of adulthood, partly because they often lose support services after age 21 and partly because social difficulties may frustrate college and career ambitions. (In some states, only more severely disabled people are eligible for assistance, such as Medicaid-funded services.)

Into the abyss

Spend time talking with autism researchers or with families of adolescents or adults with autism, and it doesn’t take long for the phrase “falling off a cliff” to come up. The new environments, people and expectations for independence that come with entry into adulthood can be tricky for any young person. For someone with impaired abilities to communicate and manage relationships, solve problems flexibly and regulate emotions, this period can be harrowing. And the end of adolescence means the end of federally mandated special education services — just when the need for support may be greatest.

In a study of 242 teens transitioning to adulthood, Taylor and Marsha Mailick at Wisconsin–Madison found that young people’s autism symptoms and behaviors such as repetitive habits, withdrawal and self-harm often improved during adolescence. But progress typically slowed markedly, or even stopped, after students left high school.

Paul Shattuck directs the Life Course Outcomes program at Drexel University’s Autism Institute in Philadelphia. He has spent much of the last five years dissecting data from a nationally representative survey of adults who received special education services during high school, including students with autism.

Shattuck’s results are bleak. Within just a few years of leaving high school, almost 40 percent of the young adults in his sample were receiving no medical, mental health, case management or speech or language services, he and colleagues reported in JAMA Pediatrics in 2011.

In a separate study published in 2012 in Pediatrics, Shattuck’s team found that more than half of young adults with autism were “completely disengaged” from any employment or post-secondary education in the two years after leaving high school. Young adults with learning disabilities, intellectual disabilities or speech or language impairment were much more likely to have some engagement with work or school after high school.

Poor employment outcomes are especially dismaying because good employment may make a world of difference for autistic adults’ personal development. In a 2014 study, Taylor, Smith and Mailick found that the more independence adults had at work, the more improvement they showed over the next five years in social interactions, communication skills, repetitive behaviors, self-harm, socially offensive behavior and activities such as housekeeping and making meals.

Those results, published in the Journal of Autism and Developmental Disorders, shouldn’t be surprising, Taylor says. “We see that in typically developing people all the time. If you’re in a job that’s a good fit for you or where the expectations are high, oftentimes you rise to that. Why wouldn’t we expect the same thing for somebody with autism?” The findings, she says, suggest that “we don’t have to go in and ‘fix’ everything for somebody with autism before we put them in some sort of job setting.”

It may seem obvious that as children with autism mature, most will continue to need support and services. But the body of research on best practices for supporting adults is flimsy.

Getting along

Many aspects of work life can present major challenges for people with autism. A few examples:

Making small talk

“Can you believe this weather?” Or, “How about that basketball game last night?” Small talk, inane as it can be sometimes, is an essential social skill. But it is one that many people with autism aren’t wired for. At work, someone who has difficulty responding smoothly to seemingly inconsequential questions like “How was your weekend?” might be perceived as aloof or unintelligent.

Interpreting body language and facial expressions

Communication is about a lot more than words. Deciphering nonverbal behavior is just as important. A person with autism may miss or fail to understand subtle but important cues. For example, gestures or furrowed brows might signal that two coworkers are in the midst of a conflict and that it would be best to steer clear.

Following unspoken social rules

If social rules of behavior are not made explicit, a person with autism may not realize he or she is committing a faux pas by doing something that is outside the norm in a work setting, such as talking about personal matters or talking too loudly.

Remembering and following instructions

It can be difficult for people on the autism spectrum to follow multistep verbal instructions, especially if they’re given quickly. Breaking instructions down into smaller steps and putting them into writing can make a big difference.

Adapting to changes

A shift in routine or an unexpected event that might appear small to someone without autism, such as an adjustment to work hours or a change in supervisor, can be difficult for someone with autism to cope with.

Planning and organizing

No one’s memory is infallible — that’s why many people keep checklists and calendars to keep track of commitments and designate specific places for their keys or cellphone. Most people adopt such organizational tricks intuitively, without much thought. But for many people with autism, doing so does not come naturally. “Prospective memory strategies,” as they are called, must be explicitly taught.

In 2013, a review published in the Journal of Autism and Developmental Disorders of 1,217 studies, conducted from 1950 to 2011, found only 13 that assessed interventions (all psychologically based) for adults with autism. The review, by researchers at the University of Pittsburgh, found that most research followed single cases or involved very few participants. Only four of the studies randomly assigned adults to treatment versus control groups.

One of the few randomized controlled trials that the review included was a study published in 2012 in the same journal and led by clinical psychologist Elizabeth Laugeson of UCLA. She enrolled 17 high-functioning young adults diagnosed with autism spectrum disorders in a 14-week course that provided participants with concrete rules of social behavior. Participants also practiced social skills such as entering and leaving conversations, organizing get-togethers, handling teasing and resolving disagreements. Separately, parents and other caregivers received guidance about how to coach their young adults without compromising their independence.

The misconception about people with autism, Laugeson says, is that they’re asocial and perfectly happy being alone. “Most adults with autism will tell you that they want to make friends and have relationships, but they don’t know how. As a result, they often experience tremendous loneliness.” Adults going through her program demonstrate better overall social skills, improved social responsiveness and more social engagement. But perhaps best of all, she says, they no longer feel as lonely and isolated.

Like Laugeson’s program, most of the adult-intervention studies that the Pitt researchers reviewed had positive results. But the small number of studies and wide variability in their methods and in the size of their effects make it difficult to draw conclusions about the effectiveness of any given intervention, says doctoral student Lauren Bishop-Fitzpatrick, the study’s lead author. More than anything, she says, the results of the review highlight the need for rigorously studied behavioral treatments for adults with autism.

The tide does appear to be shifting, in part due to the community of parents who successfully agitated for more funding for autism research in the 1990s. “There’s a second wind coming to this movement,” Shattuck says. Many pioneer activists, their children now grown, “are raising money for research and activating around experimental new approaches to help people have a decent quality of life as adults."

In the last several years, both the federal government and private organizations have upped their investment in adult intervention research. In September, the National Institute of Mental Health awarded three grants totaling nearly $760,000 to support development and testing of new intervention programs for adults with autism. The research and advocacy organization Autism Speaks has likewise begun investing in research in this area, says Rob Ring, the organization’s chief scientific officer. Of the $2.73 million Autism Speaks has spent on adult-focused research since 2010, only about $650,000 has been for treatment studies. But Ring says investment in such research is bound to rise. “As we become more acutely aware of the tidal wave of individuals who are transitioning into adulthood, we’re becoming very much aware of the needs that are out there for adults,” he says.

Much of the emerging research focuses on helping adults with autism strengthen social communication skills and learn to understand what some autism experts call the hidden curriculum — the unstated rules and customs that govern social behavior, such as “don’t hug your boss at the office” or “don’t ask a coworker how much money she makes.”

Social beings

The ability to function socially, which many people take for granted, is actually very complex, says Edward Brodkin, director of the Adult Autism Spectrum Program at the University of Pennsylvania School of Medicine.

With one of the NIMH grants, Brodkin is developing a training program that he hopes will help adults with autism learn to interact with others more comfortably, form meaningful relationships and navigate the social world in the ways that are necessary for school or job success. In group sessions, participants will learn and practice fundamental skills such as making appropriate eye contact, ending conversations smoothly and gathering information about other people at a distance by reading their body language. 

Brodkin’s program will also place participants in volunteer work teams, something that he believes will not only strengthen new skills and provide concrete work experience, but will also carry an important psychological benefit. “People with disabilities are often in the position of needing and receiving help,” Brodkin says. “There’s something about giving help that we think will be empowering.”

Other experimental treatment programs focus on social skills. In a recent pilot study led by speech-language pathologist Lindee Morgan of Florida State University’s Autism Institute in Tallahassee, 24 high-functioning adults diagnosed with autism spectrum disorders were randomly assigned to participate in a three-month interview-preparation program or be put on a waiting list. The weekly group sessions covered greetings, nonverbal communication, hygiene, emotion management and closing interviews. They included a mix of discussion, role play, video feedback, peer review and games.

People with disabilities are often in the position of needing and receiving help. There’s something about giving help that we think will be empowering.

— Edward Brodkin 

Morgan’s team compared participants’ performance on mock job interviews before and after the intervention. Those in the treatment group — but not those in the waiting list control group — showed substantial improvement on outcomes, the researchers reported last September in the Journal of Autism and Developmental Disorders. The mock interviewers noted improvement in numerous facets of participants’ presentations, including their grooming, the smoothness of their greetings and the richness of their responses to questions.

“At the beginning, it was as if a lot of the participants didn’t really understand that in a job interview you’re supposed to sell yourself,” Morgan says. “We taught them to market themselves, and their ability to convey to the potential employer what they would bring to the job really improved.”

Morgan also points out a more intangible benefit. “More than half of high-functioning adults with autism report not having any friends,” she says. “One of the by-products of participating in this class was that these guys really got to know each other and enjoyed each other.”

Social skills are key to getting and keeping a job. But they’re not the only skills that adults with autism often struggle with, notes research psychologist Mary Baker-Ericzén at Rady Children’s Hospital–San Diego and director of the Intricate Mind Institute, which provides therapeutic services for people with neuro-developmental disorders.

In a program she’s developing, participants will practice social skills such as deciphering “hidden” meanings, handling compliments and criticism and reading body language. But her program will also target another common aspect of autism: impairments in what psychologists call “executive functioning.” The term encompasses an array of cognitive and problem-solving skills such as paying attention to and remembering instructions, using organizational tools like to-do lists and calendars, planning and preparing for the future and thinking flexibly enough to generate a “Plan B” when circumstances change.

The intervention is based on research involving people with traumatic brain injuries, dementia and schizophrenia — populations that, like people with autism spectrum disorders, tend to have difficulties with executive functioning. “Our theory is that if we develop these cognitive functioning skills, those are going to be related to functional skills like being able to get up on time or retain what their boss tells them,” Baker-Ericzén says.

The larger community

Few adults with autism forge their way in the world on their own. For most, family members are an important, even daily, source of support. That reality is the cornerstone of a program Leann Smith is testing in Wisconsin. She first became interested in autism during college, when she worked as an in-home therapy provider for a young boy with autism. “It was so amazing and beautiful and powerful to me to see how families can rally and do what needs to be done to provide educational opportunities and interventions for their loved ones,” she says.

But the caregiver role takes a psychological toll. “Although parents work very hard in supporting their children [with autism], it is not an easy road,” Smith says. She is recruiting participants to test an intervention focused on reducing stress for young adults with autism and their families. The hope is that stress reduction will in turn help the young people take on adult roles. Reducing stress and emotional intensity, she says, “has a stabilizing effect, which can help people be more empowered and able to maintain a job.”

Smith’s three-year study will involve 56 families randomly assigned to take part in the intervention immediately or after a six-month wait, thus forming a control group. Smith’s team will meet individually with each person with autism and his or her family members to learn about personal and vocational goals and the challenges they’re encountering. Then families will take part in eight weekly group sessions— adults with autism in one room, family members in another.

Smith’s team will provide practical information, such as where to find local educational and vocational services and how to access them, networking strategies for finding friends and employment, and advice about financial planning and legal guardianship arrangements.

Participants will also rehearse problem solving steps and learn a coping strategy that can help reduce stress for families of adolescents with autism: positively reinterpreting challenges or difficult events as opportunities for growth. “Even if you can’t change the stressor, you can change how you think about it,” Smith says.

Smith’s emphasis on family counters what Shattuck says is the dominant approach to studying autism. Most autism research, he says, “presumes there’s something defective with the person, and if we want the person to have a better outcome, we need to fix the person.” Shattuck believes researchers should also seek ways to improve the wider social context for adults with autism, from strengthening housing and vocational support services to educating police departments about aspects of autism that might influence police encounters.

Toward that goal, Shattuck is teaming up with community-based programs that are testing innovative interventions for adults with autism. He plans to study how effective the programs are and how readily they could be scaled up to work elsewhere. “There’s a lot of cool stuff happening,” he says.

In Jonas Moore’s experience, such services are badly needed. With the help of a good therapist, he has built a life that he finds fulfilling. “There are certain social situations I will not go into,” he says. “But at least I have friends. Before I didn’t want to have anything to do with socializing or friendship.”

Knowing that research is happening makes Moore feel optimistic, he says. “It means that people like me are going to get more help. We’re human beings too and we want to be treated with respect, want to be understood, want people to be patient with us and not to assume that we’re trying to be difficult.”

I don’t look like I have a disability, do I?” Jonas Moore asks me. I shake my head. No, I say — he does not. Bundled up in a puffy green coat in a drafty Starbucks, Moore, 35 and sandy-haired, doesn’t stand out in the crowd seeking refuge from the Wisconsin cold. His handshake is firm and his blue eyes meet mine as we talk. He comes across as intelligent and thoughtful, if perhaps a bit reserved. His disability — autism — is invisible.

That’s part of the problem, says Moore. Like most people with autism spectrum disorders, he finds relationships challenging. In the past, he has been quick to anger and has had what he calls “meltdowns.” Those who don’t know he has autism can easily misinterpret his actions. “People think that when I do misbehave I’m somehow intentionally trying to be a jerk,” Moore says. “That’s just not the case.”

His difficulty managing emotions has gotten him into some trouble, and he’s had a hard time holding onto jobs — an outcome he might have avoided, he says, if his coworkers and bosses had better understood his intentions.

Over time, things have gotten better. Moore has held the same job for five years, vacuuming commercial buildings on a night cleaning crew. He attributes his success to getting the right amount of medication and therapy, to time maturing him and to the fact that he now works mostly alone.

Moore is fortunate. His parents help support him financially. He has access to good mental health care. And with the help of the state’s division of vocational rehabilitation, he has found a job that suits him. Many adults with autism are not so lucky.

Scientists are beginning to take note, but their understanding of how best to help adults with autism is paper thin. Of the more than $400 million that the United States spends each year on autism research, the vast majority is for two avenues of study: genetics research to find the causes and a cure, and studies on early diagnosis and intervention in children. Few studies have examined treatments for adults.

Accepted approaches for treating children with autism range from brief interventions for addressing specific challenges like recognizing facial expressions to comprehensive behavioral training programs that involve parents, teachers and peers.

“When you look at early intervention for autism, there are lots of different models, and we have a pretty good sense of evidence-based practices for young children with autism,” says Leann Smith, a developmental psychologist at the University of Wisconsin–Madison, whose research focuses on adolescents and adults  with autism plus their families. “There isn’t anything analogous to that for adults,” she says.

Activists like Temple Grandin and others are making the case that adults with autism bring important qualities to society. And in the last few years, public and private agencies that fund autism research have begun funding a growing cadre of researchers to develop and test therapies for adults with autism — particularly high-functioning adults. 

“I really do expect to see huge changes in terms of what we know about how to support adolescents and adults with autism over the next 10 years or so,” says Julie Lounds Taylor, a Vanderbilt University developmental psychologist who studies the transition to adulthood for people with autism. “I would not have said that two years ago.”

Finding their place

The term “autism spectrum disorder” includes a suite of neurological conditions that range in severity and include impairments in communication and social interaction, difficulty with regulation of emotions and repetitive or obsessive behaviors and interests. About half of children diagnosed with an autism spectrum disorder are “high functioning” like Moore, meaning they have average or above-average intelligence. No drugs have been approved to treat the core symptoms of autism in children or adults, though many people with autism take medications for conditions that can occur alongside autism, such as depression, anxiety and irritability.

There are no reliable estimates of the number of adults with autism. But the prevalence of children diagnosed with autism has spiked in the last two decades. In 2000, the U.S. Centers for Disease Control and Prevention estimated that 1 in 150 children had an autism spectrum disorder. The agency’s 2014 estimate is a startling 1 in 68. The reasons for the increase aren’t fully understood, but researchers believe it is partly due to improved detection.

Those children will eventually reach adulthood and will still need support services as they try to find their place in the world.

One might expect that people with autism who are most high functioning would fare best in the adult world. But paradoxically, those without an intellectual disability are most likely to falter at the precipice of adulthood, partly because they often lose support services after age 21 and partly because social difficulties may frustrate college and career ambitions. (In some states, only more severely disabled people are eligible for assistance, such as Medicaid-funded services.)

Into the abyss

Spend time talking with autism researchers or with families of adolescents or adults with autism, and it doesn’t take long for the phrase “falling off a cliff” to come up. The new environments, people and expectations for independence that come with entry into adulthood can be tricky for any young person. For someone with impaired abilities to communicate and manage relationships, solve problems flexibly and regulate emotions, this period can be harrowing. And the end of adolescence means the end of federally mandated special education services — just when the need for support may be greatest.

In a study of 242 teens transitioning to adulthood, Taylor and Marsha Mailick at Wisconsin–Madison found that young people’s autism symptoms and behaviors such as repetitive habits, withdrawal and self-harm often improved during adolescence. But progress typically slowed markedly, or even stopped, after students left high school.

Paul Shattuck directs the Life Course Outcomes program at Drexel University’s Autism Institute in Philadelphia. He has spent much of the last five years dissecting data from a nationally representative survey of adults who received special education services during high school, including students with autism.

Shattuck’s results are bleak. Within just a few years of leaving high school, almost 40 percent of the young adults in his sample were receiving no medical, mental health, case management or speech or language services, he and colleagues reported in JAMA Pediatrics in 2011.

In a separate study published in 2012 in Pediatrics, Shattuck’s team found that more than half of young adults with autism were “completely disengaged” from any employment or post-secondary education in the two years after leaving high school. Young adults with learning disabilities, intellectual disabilities or speech or language impairment were much more likely to have some engagement with work or school after high school.

Poor employment outcomes are especially dismaying because good employment may make a world of difference for autistic adults’ personal development. In a 2014 study, Taylor, Smith and Mailick found that the more independence adults had at work, the more improvement they showed over the next five years in social interactions, communication skills, repetitive behaviors, self-harm, socially offensive behavior and activities such as housekeeping and making meals.

Those results, published in the Journal of Autism and Developmental Disorders, shouldn’t be surprising, Taylor says. “We see that in typically developing people all the time. If you’re in a job that’s a good fit for you or where the expectations are high, oftentimes you rise to that. Why wouldn’t we expect the same thing for somebody with autism?” The findings, she says, suggest that “we don’t have to go in and ‘fix’ everything for somebody with autism before we put them in some sort of job setting.”

It may seem obvious that as children with autism mature, most will continue to need support and services. But the body of research on best practices for supporting adults is flimsy.

Getting along

Many aspects of work life can present major challenges for people with autism. A few examples:

Making small talk

“Can you believe this weather?” Or, “How about that basketball game last night?” Small talk, inane as it can be sometimes, is an essential social skill. But it is one that many people with autism aren’t wired for. At work, someone who has difficulty responding smoothly to seemingly inconsequential questions like “How was your weekend?” might be perceived as aloof or unintelligent.

Interpreting body language and facial expressions

Communication is about a lot more than words. Deciphering nonverbal behavior is just as important. A person with autism may miss or fail to understand subtle but important cues. For example, gestures or furrowed brows might signal that two coworkers are in the midst of a conflict and that it would be best to steer clear.

Following unspoken social rules

If social rules of behavior are not made explicit, a person with autism may not realize he or she is committing a faux pas by doing something that is outside the norm in a work setting, such as talking about personal matters or talking too loudly.

Remembering and following instructions

It can be difficult for people on the autism spectrum to follow multistep verbal instructions, especially if they’re given quickly. Breaking instructions down into smaller steps and putting them into writing can make a big difference.

Adapting to changes

A shift in routine or an unexpected event that might appear small to someone without autism, such as an adjustment to work hours or a change in supervisor, can be difficult for someone with autism to cope with.

Planning and organizing

No one’s memory is infallible — that’s why many people keep checklists and calendars to keep track of commitments and designate specific places for their keys or cellphone. Most people adopt such organizational tricks intuitively, without much thought. But for many people with autism, doing so does not come naturally. “Prospective memory strategies,” as they are called, must be explicitly taught.

In 2013, a review published in the Journal of Autism and Developmental Disorders of 1,217 studies, conducted from 1950 to 2011, found only 13 that assessed interventions (all psychologically based) for adults with autism. The review, by researchers at the University of Pittsburgh, found that most research followed single cases or involved very few participants. Only four of the studies randomly assigned adults to treatment versus control groups.

One of the few randomized controlled trials that the review included was a study published in 2012 in the same journal and led by clinical psychologist Elizabeth Laugeson of UCLA. She enrolled 17 high-functioning young adults diagnosed with autism spectrum disorders in a 14-week course that provided participants with concrete rules of social behavior. Participants also practiced social skills such as entering and leaving conversations, organizing get-togethers, handling teasing and resolving disagreements. Separately, parents and other caregivers received guidance about how to coach their young adults without compromising their independence.

The misconception about people with autism, Laugeson says, is that they’re asocial and perfectly happy being alone. “Most adults with autism will tell you that they want to make friends and have relationships, but they don’t know how. As a result, they often experience tremendous loneliness.” Adults going through her program demonstrate better overall social skills, improved social responsiveness and more social engagement. But perhaps best of all, she says, they no longer feel as lonely and isolated.

Like Laugeson’s program, most of the adult-intervention studies that the Pitt researchers reviewed had positive results. But the small number of studies and wide variability in their methods and in the size of their effects make it difficult to draw conclusions about the effectiveness of any given intervention, says doctoral student Lauren Bishop-Fitzpatrick, the study’s lead author. More than anything, she says, the results of the review highlight the need for rigorously studied behavioral treatments for adults with autism.

The tide does appear to be shifting, in part due to the community of parents who successfully agitated for more funding for autism research in the 1990s. “There’s a second wind coming to this movement,” Shattuck says. Many pioneer activists, their children now grown, “are raising money for research and activating around experimental new approaches to help people have a decent quality of life as adults."

In the last several years, both the federal government and private organizations have upped their investment in adult intervention research. In September, the National Institute of Mental Health awarded three grants totaling nearly $760,000 to support development and testing of new intervention programs for adults with autism. The research and advocacy organization Autism Speaks has likewise begun investing in research in this area, says Rob Ring, the organization’s chief scientific officer. Of the $2.73 million Autism Speaks has spent on adult-focused research since 2010, only about $650,000 has been for treatment studies. But Ring says investment in such research is bound to rise. “As we become more acutely aware of the tidal wave of individuals who are transitioning into adulthood, we’re becoming very much aware of the needs that are out there for adults,” he says.

Much of the emerging research focuses on helping adults with autism strengthen social communication skills and learn to understand what some autism experts call the hidden curriculum — the unstated rules and customs that govern social behavior, such as “don’t hug your boss at the office” or “don’t ask a coworker how much money she makes.”

Social beings

The ability to function socially, which many people take for granted, is actually very complex, says Edward Brodkin, director of the Adult Autism Spectrum Program at the University of Pennsylvania School of Medicine.

With one of the NIMH grants, Brodkin is developing a training program that he hopes will help adults with autism learn to interact with others more comfortably, form meaningful relationships and navigate the social world in the ways that are necessary for school or job success. In group sessions, participants will learn and practice fundamental skills such as making appropriate eye contact, ending conversations smoothly and gathering information about other people at a distance by reading their body language. 

Brodkin’s program will also place participants in volunteer work teams, something that he believes will not only strengthen new skills and provide concrete work experience, but will also carry an important psychological benefit. “People with disabilities are often in the position of needing and receiving help,” Brodkin says. “There’s something about giving help that we think will be empowering.”

Other experimental treatment programs focus on social skills. In a recent pilot study led by speech-language pathologist Lindee Morgan of Florida State University’s Autism Institute in Tallahassee, 24 high-functioning adults diagnosed with autism spectrum disorders were randomly assigned to participate in a three-month interview-preparation program or be put on a waiting list. The weekly group sessions covered greetings, nonverbal communication, hygiene, emotion management and closing interviews. They included a mix of discussion, role play, video feedback, peer review and games.

People with disabilities are often in the position of needing and receiving help. There’s something about giving help that we think will be empowering.

— Edward Brodkin 

Morgan’s team compared participants’ performance on mock job interviews before and after the intervention. Those in the treatment group — but not those in the waiting list control group — showed substantial improvement on outcomes, the researchers reported last September in the Journal of Autism and Developmental Disorders. The mock interviewers noted improvement in numerous facets of participants’ presentations, including their grooming, the smoothness of their greetings and the richness of their responses to questions.

“At the beginning, it was as if a lot of the participants didn’t really understand that in a job interview you’re supposed to sell yourself,” Morgan says. “We taught them to market themselves, and their ability to convey to the potential employer what they would bring to the job really improved.”

Morgan also points out a more intangible benefit. “More than half of high-functioning adults with autism report not having any friends,” she says. “One of the by-products of participating in this class was that these guys really got to know each other and enjoyed each other.”

Social skills are key to getting and keeping a job. But they’re not the only skills that adults with autism often struggle with, notes research psychologist Mary Baker-Ericzén at Rady Children’s Hospital–San Diego and director of the Intricate Mind Institute, which provides therapeutic services for people with neuro-developmental disorders.

In a program she’s developing, participants will practice social skills such as deciphering “hidden” meanings, handling compliments and criticism and reading body language. But her program will also target another common aspect of autism: impairments in what psychologists call “executive functioning.” The term encompasses an array of cognitive and problem-solving skills such as paying attention to and remembering instructions, using organizational tools like to-do lists and calendars, planning and preparing for the future and thinking flexibly enough to generate a “Plan B” when circumstances change.

The intervention is based on research involving people with traumatic brain injuries, dementia and schizophrenia — populations that, like people with autism spectrum disorders, tend to have difficulties with executive functioning. “Our theory is that if we develop these cognitive functioning skills, those are going to be related to functional skills like being able to get up on time or retain what their boss tells them,” Baker-Ericzén says.

The larger community

Few adults with autism forge their way in the world on their own. For most, family members are an important, even daily, source of support. That reality is the cornerstone of a program Leann Smith is testing in Wisconsin. She first became interested in autism during college, when she worked as an in-home therapy provider for a young boy with autism. “It was so amazing and beautiful and powerful to me to see how families can rally and do what needs to be done to provide educational opportunities and interventions for their loved ones,” she says.

But the caregiver role takes a psychological toll. “Although parents work very hard in supporting their children [with autism], it is not an easy road,” Smith says. She is recruiting participants to test an intervention focused on reducing stress for young adults with autism and their families. The hope is that stress reduction will in turn help the young people take on adult roles. Reducing stress and emotional intensity, she says, “has a stabilizing effect, which can help people be more empowered and able to maintain a job.”

Smith’s three-year study will involve 56 families randomly assigned to take part in the intervention immediately or after a six-month wait, thus forming a control group. Smith’s team will meet individually with each person with autism and his or her family members to learn about personal and vocational goals and the challenges they’re encountering. Then families will take part in eight weekly group sessions— adults with autism in one room, family members in another.

Smith’s team will provide practical information, such as where to find local educational and vocational services and how to access them, networking strategies for finding friends and employment, and advice about financial planning and legal guardianship arrangements.

Participants will also rehearse problem solving steps and learn a coping strategy that can help reduce stress for families of adolescents with autism: positively reinterpreting challenges or difficult events as opportunities for growth. “Even if you can’t change the stressor, you can change how you think about it,” Smith says.

Smith’s emphasis on family counters what Shattuck says is the dominant approach to studying autism. Most autism research, he says, “presumes there’s something defective with the person, and if we want the person to have a better outcome, we need to fix the person.” Shattuck believes researchers should also seek ways to improve the wider social context for adults with autism, from strengthening housing and vocational support services to educating police departments about aspects of autism that might influence police encounters.

Toward that goal, Shattuck is teaming up with community-based programs that are testing innovative interventions for adults with autism. He plans to study how effective the programs are and how readily they could be scaled up to work elsewhere. “There’s a lot of cool stuff happening,” he says.

In Jonas Moore’s experience, such services are badly needed. With the help of a good therapist, he has built a life that he finds fulfilling. “There are certain social situations I will not go into,” he says. “But at least I have friends. Before I didn’t want to have anything to do with socializing or friendship.”

Knowing that research is happening makes Moore feel optimistic, he says. “It means that people like me are going to get more help. We’re human beings too and we want to be treated with respect, want to be understood, want people to be patient with us and not to assume that we’re trying to be difficult.”

I 

 with autism are left to navigate a jarring world

Researchers turn attention to a growing population of adults with autism spectrum disorders

BY SIRI CARPENTER 1:30PM, FEBRUARY 10, 2015

“I don’t look like I have a disability, do I?” Jonas Moore asks me. I shake my head. No, I say — he does not. Bundled up in a puffy green coat in a drafty Starbucks, Moore, 35 and sandy-haired, doesn’t stand out in the crowd seeking refuge from the Wisconsin cold. His handshake is firm and his blue eyes meet mine as we talk. He comes across as intelligent and thoughtful, if perhaps a bit reserved. His disability — autism — is invisible.

That’s part of the problem, says Moore. Like most people with autism spectrum disorders, he finds relationships challenging. In the past, he has been quick to anger and has had what he calls “meltdowns.” Those who don’t know he has autism can easily misinterpret his actions. “People think that when I do misbehave I’m somehow intentionally trying to be a jerk,” Moore says. “That’s just not the case.”

His difficulty managing emotions has gotten him into some trouble, and he’s had a hard time holding onto jobs — an outcome he might have avoided, he says, if his coworkers and bosses had better understood his intentions.

Over time, things have gotten better. Moore has held the same job for five years, vacuuming commercial buildings on a night cleaning crew. He attributes his success to getting the right amount of medication and therapy, to time maturing him and to the fact that he now works mostly alone.

Moore is fortunate. His parents help support him financially. He has access to good mental health care. And with the help of the state’s division of vocational rehabilitation, he has found a job that suits him. Many adults with autism are not so lucky.

Scientists are beginning to take note, but their understanding of how best to help adults with autism is paper thin. Of the more than $400 million that the United States spends each year on autism research, the vast majority is for two avenues of study: genetics research to find the causes and a cure, and studies on early diagnosis and intervention in children. Few studies have examined treatments for adults.

Accepted approaches for treating children with autism range from brief interventions for addressing specific challenges like recognizing facial expressions to comprehensive behavioral training programs that involve parents, teachers and peers.

“When you look at early intervention for autism, there are lots of different models, and we have a pretty good sense of evidence-based practices for young children with autism,” says Leann Smith, a developmental psychologist at the University of Wisconsin–Madison, whose research focuses on adolescents and adults  with autism plus their families. “There isn’t anything analogous to that for adults,” she says.

Activists like Temple Grandin and others are making the case that adults with autism bring important qualities to society. And in the last few years, public and private agencies that fund autism research have begun funding a growing cadre of researchers to develop and test therapies for adults with autism — particularly high-functioning adults. 

“I really do expect to see huge changes in terms of what we know about how to support adolescents and adults with autism over the next 10 years or so,” says Julie Lounds Taylor, a Vanderbilt University developmental psychologist who studies the transition to adulthood for people with autism. “I would not have said that two years ago.”

Finding their place

The term “autism spectrum disorder” includes a suite of neurological conditions that range in severity and include impairments in communication and social interaction, difficulty with regulation of emotions and repetitive or obsessive behaviors and interests. About half of children diagnosed with an autism spectrum disorder are “high functioning” like Moore, meaning they have average or above-average intelligence. No drugs have been approved to treat the core symptoms of autism in children or adults, though many people with autism take medications for conditions that can occur alongside autism, such as depression, anxiety and irritability.

There are no reliable estimates of the number of adults with autism. But the prevalence of children diagnosed with autism has spiked in the last two decades. In 2000, the U.S. Centers for Disease Control and Prevention estimated that 1 in 150 children had an autism spectrum disorder. The agency’s 2014 estimate is a startling 1 in 68. The reasons for the increase aren’t fully understood, but researchers believe it is partly due to improved detection.

Those children will eventually reach adulthood and will still need support services as they try to find their place in the world.

One might expect that people with autism who are most high functioning would fare best in the adult world. But paradoxically, those without an intellectual disability are most likely to falter at the precipice of adulthood, partly because they often lose support services after age 21 and partly because social difficulties may frustrate college and career ambitions. (In some states, only more severely disabled people are eligible for assistance, such as Medicaid-funded services.)

Into the abyss

Spend time talking with autism researchers or with families of adolescents or adults with autism, and it doesn’t take long for the phrase “falling off a cliff” to come up. The new environments, people and expectations for independence that come with entry into adulthood can be tricky for any young person. For someone with impaired abilities to communicate and manage relationships, solve problems flexibly and regulate emotions, this period can be harrowing. And the end of adolescence means the end of federally mandated special education services — just when the need for support may be greatest.

In a study of 242 teens transitioning to adulthood, Taylor and Marsha Mailick at Wisconsin–Madison found that young people’s autism symptoms and behaviors such as repetitive habits, withdrawal and self-harm often improved during adolescence. But progress typically slowed markedly, or even stopped, after students left high school.

Paul Shattuck directs the Life Course Outcomes program at Drexel University’s Autism Institute in Philadelphia. He has spent much of the last five years dissecting data from a nationally representative survey of adults who received special education services during high school, including students with autism.

Shattuck’s results are bleak. Within just a few years of leaving high school, almost 40 percent of the young adults in his sample were receiving no medical, mental health, case management or speech or language services, he and colleagues reported in JAMA Pediatrics in 2011.

In a separate study published in 2012 in Pediatrics, Shattuck’s team found that more than half of young adults with autism were “completely disengaged” from any employment or post-secondary education in the two years after leaving high school. Young adults with learning disabilities, intellectual disabilities or speech or language impairment were much more likely to have some engagement with work or school after high school.

Poor employment outcomes are especially dismaying because good employment may make a world of difference for autistic adults’ personal development. In a 2014 study, Taylor, Smith and Mailick found that the more independence adults had at work, the more improvement they showed over the next five years in social interactions, communication skills, repetitive behaviors, self-harm, socially offensive behavior and activities such as housekeeping and making meals.

Those results, published in the Journal of Autism and Developmental Disorders, shouldn’t be surprising, Taylor says. “We see that in typically developing people all the time. If you’re in a job that’s a good fit for you or where the expectations are high, oftentimes you rise to that. Why wouldn’t we expect the same thing for somebody with autism?” The findings, she says, suggest that “we don’t have to go in and ‘fix’ everything for somebody with autism before we put them in some sort of job setting.”

It may seem obvious that as children with autism mature, most will continue to need support and services. But the body of research on best practices for supporting adults is flimsy.

Getting along

Many aspects of work life can present major challenges for people with autism. A few examples:

Making small talk

“Can you believe this weather?” Or, “How about that basketball game last night?” Small talk, inane as it can be sometimes, is an essential social skill. But it is one that many people with autism aren’t wired for. At work, someone who has difficulty responding smoothly to seemingly inconsequential questions like “How was your weekend?” might be perceived as aloof or unintelligent.

Interpreting body language and facial expressions

Communication is about a lot more than words. Deciphering nonverbal behavior is just as important. A person with autism may miss or fail to understand subtle but important cues. For example, gestures or furrowed brows might signal that two coworkers are in the midst of a conflict and that it would be best to steer clear.

Following unspoken social rules

If social rules of behavior are not made explicit, a person with autism may not realize he or she is committing a faux pas by doing something that is outside the norm in a work setting, such as talking about personal matters or talking too loudly.

Remembering and following instructions

It can be difficult for people on the autism spectrum to follow multistep verbal instructions, especially if they’re given quickly. Breaking instructions down into smaller steps and putting them into writing can make a big difference.

Adapting to changes

A shift in routine or an unexpected event that might appear small to someone without autism, such as an adjustment to work hours or a change in supervisor, can be difficult for someone with autism to cope with.

Planning and organizing

No one’s memory is infallible — that’s why many people keep checklists and calendars to keep track of commitments and designate specific places for their keys or cellphone. Most people adopt such organizational tricks intuitively, without much thought. But for many people with autism, doing so does not come naturally. “Prospective memory strategies,” as they are called, must be explicitly taught.

In 2013, a review published in the Journal of Autism and Developmental Disorders of 1,217 studies, conducted from 1950 to 2011, found only 13 that assessed interventions (all psychologically based) for adults with autism. The review, by researchers at the University of Pittsburgh, found that most research followed single cases or involved very few participants. Only four of the studies randomly assigned adults to treatment versus control groups.

One of the few randomized controlled trials that the review included was a study published in 2012 in the same journal and led by clinical psychologist Elizabeth Laugeson of UCLA. She enrolled 17 high-functioning young adults diagnosed with autism spectrum disorders in a 14-week course that provided participants with concrete rules of social behavior. Participants also practiced social skills such as entering and leaving conversations, organizing get-togethers, handling teasing and resolving disagreements. Separately, parents and other caregivers received guidance about how to coach their young adults without compromising their independence.

The misconception about people with autism, Laugeson says, is that they’re asocial and perfectly happy being alone. “Most adults with autism will tell you that they want to make friends and have relationships, but they don’t know how. As a result, they often experience tremendous loneliness.” Adults going through her program demonstrate better overall social skills, improved social responsiveness and more social engagement. But perhaps best of all, she says, they no longer feel as lonely and isolated.

Like Laugeson’s program, most of the adult-intervention studies that the Pitt researchers reviewed had positive results. But the small number of studies and wide variability in their methods and in the size of their effects make it difficult to draw conclusions about the effectiveness of any given intervention, says doctoral student Lauren Bishop-Fitzpatrick, the study’s lead author. More than anything, she says, the results of the review highlight the need for rigorously studied behavioral treatments for adults with autism.

The tide does appear to be shifting, in part due to the community of parents who successfully agitated for more funding for autism research in the 1990s. “There’s a second wind coming to this movement,” Shattuck says. Many pioneer activists, their children now grown, “are raising money for research and activating around experimental new approaches to help people have a decent quality of life as adults."

In the last several years, both the federal government and private organizations have upped their investment in adult intervention research. In September, the National Institute of Mental Health awarded three grants totaling nearly $760,000 to support development and testing of new intervention programs for adults with autism. The research and advocacy organization Autism Speaks has likewise begun investing in research in this area, says Rob Ring, the organization’s chief scientific officer. Of the $2.73 million Autism Speaks has spent on adult-focused research since 2010, only about $650,000 has been for treatment studies. But Ring says investment in such research is bound to rise. “As we become more acutely aware of the tidal wave of individuals who are transitioning into adulthood, we’re becoming very much aware of the needs that are out there for adults,” he says.

Much of the emerging research focuses on helping adults with autism strengthen social communication skills and learn to understand what some autism experts call the hidden curriculum — the unstated rules and customs that govern social behavior, such as “don’t hug your boss at the office” or “don’t ask a coworker how much money she makes.”

Social beings

The ability to function socially, which many people take for granted, is actually very complex, says Edward Brodkin, director of the Adult Autism Spectrum Program at the University of Pennsylvania School of Medicine.

With one of the NIMH grants, Brodkin is developing a training program that he hopes will help adults with autism learn to interact with others more comfortably, form meaningful relationships and navigate the social world in the ways that are necessary for school or job success. In group sessions, participants will learn and practice fundamental skills such as making appropriate eye contact, ending conversations smoothly and gathering information about other people at a distance by reading their body language. 

Brodkin’s program will also place participants in volunteer work teams, something that he believes will not only strengthen new skills and provide concrete work experience, but will also carry an important psychological benefit. “People with disabilities are often in the position of needing and receiving help,” Brodkin says. “There’s something about giving help that we think will be empowering.”

Other experimental treatment programs focus on social skills. In a recent pilot study led by speech-language pathologist Lindee Morgan of Florida State University’s Autism Institute in Tallahassee, 24 high-functioning adults diagnosed with autism spectrum disorders were randomly assigned to participate in a three-month interview-preparation program or be put on a waiting list. The weekly group sessions covered greetings, nonverbal communication, hygiene, emotion management and closing interviews. They included a mix of discussion, role play, video feedback, peer review and games.

People with disabilities are often in the position of needing and receiving help. There’s something about giving help that we think will be empowering.

— Edward Brodkin 

Morgan’s team compared participants’ performance on mock job interviews before and after the intervention. Those in the treatment group — but not those in the waiting list control group — showed substantial improvement on outcomes, the researchers reported last September in the Journal of Autism and Developmental Disorders. The mock interviewers noted improvement in numerous facets of participants’ presentations, including their grooming, the smoothness of their greetings and the richness of their responses to questions.

“At the beginning, it was as if a lot of the participants didn’t really understand that in a job interview you’re supposed to sell yourself,” Morgan says. “We taught them to market themselves, and their ability to convey to the potential employer what they would bring to the job really improved.”

Morgan also points out a more intangible benefit. “More than half of high-functioning adults with autism report not having any friends,” she says. “One of the by-products of participating in this class was that these guys really got to know each other and enjoyed each other.”

Social skills are key to getting and keeping a job. But they’re not the only skills that adults with autism often struggle with, notes research psychologist Mary Baker-Ericzén at Rady Children’s Hospital–San Diego and director of the Intricate Mind Institute, which provides therapeutic services for people with neuro-developmental disorders.

In a program she’s developing, participants will practice social skills such as deciphering “hidden” meanings, handling compliments and criticism and reading body language. But her program will also target another common aspect of autism: impairments in what psychologists call “executive functioning.” The term encompasses an array of cognitive and problem-solving skills such as paying attention to and remembering instructions, using organizational tools like to-do lists and calendars, planning and preparing for the future and thinking flexibly enough to generate a “Plan B” when circumstances change.

The intervention is based on research involving people with traumatic brain injuries, dementia and schizophrenia — populations that, like people with autism spectrum disorders, tend to have difficulties with executive functioning. “Our theory is that if we develop these cognitive functioning skills, those are going to be related to functional skills like being able to get up on time or retain what their boss tells them,” Baker-Ericzén says.

The larger community

Few adults with autism forge their way in the world on their own. For most, family members are an important, even daily, source of support. That reality is the cornerstone of a program Leann Smith is testing in Wisconsin. She first became interested in autism during college, when she worked as an in-home therapy provider for a young boy with autism. “It was so amazing and beautiful and powerful to me to see how families can rally and do what needs to be done to provide educational opportunities and interventions for their loved ones,” she says.

But the caregiver role takes a psychological toll. “Although parents work very hard in supporting their children [with autism], it is not an easy road,” Smith says. She is recruiting participants to test an intervention focused on reducing stress for young adults with autism and their families. The hope is that stress reduction will in turn help the young people take on adult roles. Reducing stress and emotional intensity, she says, “has a stabilizing effect, which can help people be more empowered and able to maintain a job.”

Smith’s three-year study will involve 56 families randomly assigned to take part in the intervention immediately or after a six-month wait, thus forming a control group. Smith’s team will meet individually with each person with autism and his or her family members to learn about personal and vocational goals and the challenges they’re encountering. Then families will take part in eight weekly group sessions— adults with autism in one room, family members in another.

Smith’s team will provide practical information, such as where to find local educational and vocational services and how to access them, networking strategies for finding friends and employment, and advice about financial planning and legal guardianship arrangements.

Participants will also rehearse problem solving steps and learn a coping strategy that can help reduce stress for families of adolescents with autism: positively reinterpreting challenges or difficult events as opportunities for growth. “Even if you can’t change the stressor, you can change how you think about it,” Smith says.

Smith’s emphasis on family counters what Shattuck says is the dominant approach to studying autism. Most autism research, he says, “presumes there’s something defective with the person, and if we want the person to have a better outcome, we need to fix the person.” Shattuck believes researchers should also seek ways to improve the wider social context for adults with autism, from strengthening housing and vocational support services to educating police departments about aspects of autism that might influence police encounters.

Toward that goal, Shattuck is teaming up with community-based programs that are testing innovative interventions for adults with autism. He plans to study how effective the programs are and how readily they could be scaled up to work elsewhere. “There’s a lot of cool stuff happening,” he says.

In Jonas Moore’s experience, such services are badly needed. With the help of a good therapist, he has built a life that he finds fulfilling. “There are certain social situations I will not go into,” he says. “But at least I have friends. Before I didn’t want to have anything to do with socializing or friendship.”

Knowing that research is happening makes Moore feel optimistic, he says. “It means that people like me are going to get more help. We’re human beings too and we want to be treated with respect, want to be understood, want people to be patient with us and not to assume that we’re trying to be difficult.”

I don’t look like I have a disability, do I?” Jonas Moore asks me. I shake my head. No, I say — he does not. Bundled up in a puffy green coat in a drafty Starbucks, Moore, 35 and sandy-haired, doesn’t stand out in the crowd seeking refuge from the Wisconsin cold. His handshake is firm and his blue eyes meet mine as we talk. He comes across as intelligent and thoughtful, if perhaps a bit reserved. His disability — autism — is invisible.

That’s part of the problem, says Moore. Like most people with autism spectrum disorders, he finds relationships challenging. In the past, he has been quick to anger and has had what he calls “meltdowns.” Those who don’t know he has autism can easily misinterpret his actions. “People think that when I do misbehave I’m somehow intentionally trying to be a jerk,” Moore says. “That’s just not the case.”

His difficulty managing emotions has gotten him into some trouble, and he’s had a hard time holding onto jobs — an outcome he might have avoided, he says, if his coworkers and bosses had better understood his intentions.

Over time, things have gotten better. Moore has held the same job for five years, vacuuming commercial buildings on a night cleaning crew. He attributes his success to getting the right amount of medication and therapy, to time maturing him and to the fact that he now works mostly alone.

Moore is fortunate. His parents help support him financially. He has access to good mental health care. And with the help of the state’s division of vocational rehabilitation, he has found a job that suits him. Many adults with autism are not so lucky.

Scientists are beginning to take note, but their understanding of how best to help adults with autism is paper thin. Of the more than $400 million that the United States spends each year on autism research, the vast majority is for two avenues of study: genetics research to find the causes and a cure, and studies on early diagnosis and intervention in children. Few studies have examined treatments for adults.

Accepted approaches for treating children with autism range from brief interventions for addressing specific challenges like recognizing facial expressions to comprehensive behavioral training programs that involve parents, teachers and peers.

“When you look at early intervention for autism, there are lots of different models, and we have a pretty good sense of evidence-based practices for young children with autism,” says Leann Smith, a developmental psychologist at the University of Wisconsin–Madison, whose research focuses on adolescents and adults  with autism plus their families. “There isn’t anything analogous to that for adults,” she says.

Activists like Temple Grandin and others are making the case that adults with autism bring important qualities to society. And in the last few years, public and private agencies that fund autism research have begun funding a growing cadre of researchers to develop and test therapies for adults with autism — particularly high-functioning adults. 

“I really do expect to see huge changes in terms of what we know about how to support adolescents and adults with autism over the next 10 years or so,” says Julie Lounds Taylor, a Vanderbilt University developmental psychologist who studies the transition to adulthood for people with autism. “I would not have said that two years ago.”

Finding their place

The term “autism spectrum disorder” includes a suite of neurological conditions that range in severity and include impairments in communication and social interaction, difficulty with regulation of emotions and repetitive or obsessive behaviors and interests. About half of children diagnosed with an autism spectrum disorder are “high functioning” like Moore, meaning they have average or above-average intelligence. No drugs have been approved to treat the core symptoms of autism in children or adults, though many people with autism take medications for conditions that can occur alongside autism, such as depression, anxiety and irritability.

There are no reliable estimates of the number of adults with autism. But the prevalence of children diagnosed with autism has spiked in the last two decades. In 2000, the U.S. Centers for Disease Control and Prevention estimated that 1 in 150 children had an autism spectrum disorder. The agency’s 2014 estimate is a startling 1 in 68. The reasons for the increase aren’t fully understood, but researchers believe it is partly due to improved detection.

Those children will eventually reach adulthood and will still need support services as they try to find their place in the world.

One might expect that people with autism who are most high functioning would fare best in the adult world. But paradoxically, those without an intellectual disability are most likely to falter at the precipice of adulthood, partly because they often lose support services after age 21 and partly because social difficulties may frustrate college and career ambitions. (In some states, only more severely disabled people are eligible for assistance, such as Medicaid-funded services.)

Into the abyss

Spend time talking with autism researchers or with families of adolescents or adults with autism, and it doesn’t take long for the phrase “falling off a cliff” to come up. The new environments, people and expectations for independence that come with entry into adulthood can be tricky for any young person. For someone with impaired abilities to communicate and manage relationships, solve problems flexibly and regulate emotions, this period can be harrowing. And the end of adolescence means the end of federally mandated special education services — just when the need for support may be greatest.

In a study of 242 teens transitioning to adulthood, Taylor and Marsha Mailick at Wisconsin–Madison found that young people’s autism symptoms and behaviors such as repetitive habits, withdrawal and self-harm often improved during adolescence. But progress typically slowed markedly, or even stopped, after students left high school.

Paul Shattuck directs the Life Course Outcomes program at Drexel University’s Autism Institute in Philadelphia. He has spent much of the last five years dissecting data from a nationally representative survey of adults who received special education services during high school, including students with autism.

Shattuck’s results are bleak. Within just a few years of leaving high school, almost 40 percent of the young adults in his sample were receiving no medical, mental health, case management or speech or language services, he and colleagues reported in JAMA Pediatrics in 2011.

In a separate study published in 2012 in Pediatrics, Shattuck’s team found that more than half of young adults with autism were “completely disengaged” from any employment or post-secondary education in the two years after leaving high school. Young adults with learning disabilities, intellectual disabilities or speech or language impairment were much more likely to have some engagement with work or school after high school.

Poor employment outcomes are especially dismaying because good employment may make a world of difference for autistic adults’ personal development. In a 2014 study, Taylor, Smith and Mailick found that the more independence adults had at work, the more improvement they showed over the next five years in social interactions, communication skills, repetitive behaviors, self-harm, socially offensive behavior and activities such as housekeeping and making meals.

Those results, published in the Journal of Autism and Developmental Disorders, shouldn’t be surprising, Taylor says. “We see that in typically developing people all the time. If you’re in a job that’s a good fit for you or where the expectations are high, oftentimes you rise to that. Why wouldn’t we expect the same thing for somebody with autism?” The findings, she says, suggest that “we don’t have to go in and ‘fix’ everything for somebody with autism before we put them in some sort of job setting.”

It may seem obvious that as children with autism mature, most will continue to need support and services. But the body of research on best practices for supporting adults is flimsy.

Getting along

Many aspects of work life can present major challenges for people with autism. A few examples:

Making small talk

“Can you believe this weather?” Or, “How about that basketball game last night?” Small talk, inane as it can be sometimes, is an essential social skill. But it is one that many people with autism aren’t wired for. At work, someone who has difficulty responding smoothly to seemingly inconsequential questions like “How was your weekend?” might be perceived as aloof or unintelligent.

Interpreting body language and facial expressions

Communication is about a lot more than words. Deciphering nonverbal behavior is just as important. A person with autism may miss or fail to understand subtle but important cues. For example, gestures or furrowed brows might signal that two coworkers are in the midst of a conflict and that it would be best to steer clear.

Following unspoken social rules

If social rules of behavior are not made explicit, a person with autism may not realize he or she is committing a faux pas by doing something that is outside the norm in a work setting, such as talking about personal matters or talking too loudly.

Remembering and following instructions

It can be difficult for people on the autism spectrum to follow multistep verbal instructions, especially if they’re given quickly. Breaking instructions down into smaller steps and putting them into writing can make a big difference.

Adapting to changes

A shift in routine or an unexpected event that might appear small to someone without autism, such as an adjustment to work hours or a change in supervisor, can be difficult for someone with autism to cope with.

Planning and organizing

No one’s memory is infallible — that’s why many people keep checklists and calendars to keep track of commitments and designate specific places for their keys or cellphone. Most people adopt such organizational tricks intuitively, without much thought. But for many people with autism, doing so does not come naturally. “Prospective memory strategies,” as they are called, must be explicitly taught.

In 2013, a review published in the Journal of Autism and Developmental Disorders of 1,217 studies, conducted from 1950 to 2011, found only 13 that assessed interventions (all psychologically based) for adults with autism. The review, by researchers at the University of Pittsburgh, found that most research followed single cases or involved very few participants. Only four of the studies randomly assigned adults to treatment versus control groups.

One of the few randomized controlled trials that the review included was a study published in 2012 in the same journal and led by clinical psychologist Elizabeth Laugeson of UCLA. She enrolled 17 high-functioning young adults diagnosed with autism spectrum disorders in a 14-week course that provided participants with concrete rules of social behavior. Participants also practiced social skills such as entering and leaving conversations, organizing get-togethers, handling teasing and resolving disagreements. Separately, parents and other caregivers received guidance about how to coach their young adults without compromising their independence.

The misconception about people with autism, Laugeson says, is that they’re asocial and perfectly happy being alone. “Most adults with autism will tell you that they want to make friends and have relationships, but they don’t know how. As a result, they often experience tremendous loneliness.” Adults going through her program demonstrate better overall social skills, improved social responsiveness and more social engagement. But perhaps best of all, she says, they no longer feel as lonely and isolated.

Like Laugeson’s program, most of the adult-intervention studies that the Pitt researchers reviewed had positive results. But the small number of studies and wide variability in their methods and in the size of their effects make it difficult to draw conclusions about the effectiveness of any given intervention, says doctoral student Lauren Bishop-Fitzpatrick, the study’s lead author. More than anything, she says, the results of the review highlight the need for rigorously studied behavioral treatments for adults with autism.

The tide does appear to be shifting, in part due to the community of parents who successfully agitated for more funding for autism research in the 1990s. “There’s a second wind coming to this movement,” Shattuck says. Many pioneer activists, their children now grown, “are raising money for research and activating around experimental new approaches to help people have a decent quality of life as adults."

In the last several years, both the federal government and private organizations have upped their investment in adult intervention research. In September, the National Institute of Mental Health awarded three grants totaling nearly $760,000 to support development and testing of new intervention programs for adults with autism. The research and advocacy organization Autism Speaks has likewise begun investing in research in this area, says Rob Ring, the organization’s chief scientific officer. Of the $2.73 million Autism Speaks has spent on adult-focused research since 2010, only about $650,000 has been for treatment studies. But Ring says investment in such research is bound to rise. “As we become more acutely aware of the tidal wave of individuals who are transitioning into adulthood, we’re becoming very much aware of the needs that are out there for adults,” he says.

Much of the emerging research focuses on helping adults with autism strengthen social communication skills and learn to understand what some autism experts call the hidden curriculum — the unstated rules and customs that govern social behavior, such as “don’t hug your boss at the office” or “don’t ask a coworker how much money she makes.”

Social beings

The ability to function socially, which many people take for granted, is actually very complex, says Edward Brodkin, director of the Adult Autism Spectrum Program at the University of Pennsylvania School of Medicine.

With one of the NIMH grants, Brodkin is developing a training program that he hopes will help adults with autism learn to interact with others more comfortably, form meaningful relationships and navigate the social world in the ways that are necessary for school or job success. In group sessions, participants will learn and practice fundamental skills such as making appropriate eye contact, ending conversations smoothly and gathering information about other people at a distance by reading their body language. 

Brodkin’s program will also place participants in volunteer work teams, something that he believes will not only strengthen new skills and provide concrete work experience, but will also carry an important psychological benefit. “People with disabilities are often in the position of needing and receiving help,” Brodkin says. “There’s something about giving help that we think will be empowering.”

Other experimental treatment programs focus on social skills. In a recent pilot study led by speech-language pathologist Lindee Morgan of Florida State University’s Autism Institute in Tallahassee, 24 high-functioning adults diagnosed with autism spectrum disorders were randomly assigned to participate in a three-month interview-preparation program or be put on a waiting list. The weekly group sessions covered greetings, nonverbal communication, hygiene, emotion management and closing interviews. They included a mix of discussion, role play, video feedback, peer review and games.

People with disabilities are often in the position of needing and receiving help. There’s something about giving help that we think will be empowering.

— Edward Brodkin 

Morgan’s team compared participants’ performance on mock job interviews before and after the intervention. Those in the treatment group — but not those in the waiting list control group — showed substantial improvement on outcomes, the researchers reported last September in the Journal of Autism and Developmental Disorders. The mock interviewers noted improvement in numerous facets of participants’ presentations, including their grooming, the smoothness of their greetings and the richness of their responses to questions.

“At the beginning, it was as if a lot of the participants didn’t really understand that in a job interview you’re supposed to sell yourself,” Morgan says. “We taught them to market themselves, and their ability to convey to the potential employer what they would bring to the job really improved.”

Morgan also points out a more intangible benefit. “More than half of high-functioning adults with autism report not having any friends,” she says. “One of the by-products of participating in this class was that these guys really got to know each other and enjoyed each other.”

Social skills are key to getting and keeping a job. But they’re not the only skills that adults with autism often struggle with, notes research psychologist Mary Baker-Ericzén at Rady Children’s Hospital–San Diego and director of the Intricate Mind Institute, which provides therapeutic services for people with neuro-developmental disorders.

In a program she’s developing, participants will practice social skills such as deciphering “hidden” meanings, handling compliments and criticism and reading body language. But her program will also target another common aspect of autism: impairments in what psychologists call “executive functioning.” The term encompasses an array of cognitive and problem-solving skills such as paying attention to and remembering instructions, using organizational tools like to-do lists and calendars, planning and preparing for the future and thinking flexibly enough to generate a “Plan B” when circumstances change.

The intervention is based on research involving people with traumatic brain injuries, dementia and schizophrenia — populations that, like people with autism spectrum disorders, tend to have difficulties with executive functioning. “Our theory is that if we develop these cognitive functioning skills, those are going to be related to functional skills like being able to get up on time or retain what their boss tells them,” Baker-Ericzén says.

The larger community

Few adults with autism forge their way in the world on their own. For most, family members are an important, even daily, source of support. That reality is the cornerstone of a program Leann Smith is testing in Wisconsin. She first became interested in autism during college, when she worked as an in-home therapy provider for a young boy with autism. “It was so amazing and beautiful and powerful to me to see how families can rally and do what needs to be done to provide educational opportunities and interventions for their loved ones,” she says.

But the caregiver role takes a psychological toll. “Although parents work very hard in supporting their children [with autism], it is not an easy road,” Smith says. She is recruiting participants to test an intervention focused on reducing stress for young adults with autism and their families. The hope is that stress reduction will in turn help the young people take on adult roles. Reducing stress and emotional intensity, she says, “has a stabilizing effect, which can help people be more empowered and able to maintain a job.”

Smith’s three-year study will involve 56 families randomly assigned to take part in the intervention immediately or after a six-month wait, thus forming a control group. Smith’s team will meet individually with each person with autism and his or her family members to learn about personal and vocational goals and the challenges they’re encountering. Then families will take part in eight weekly group sessions— adults with autism in one room, family members in another.

Smith’s team will provide practical information, such as where to find local educational and vocational services and how to access them, networking strategies for finding friends and employment, and advice about financial planning and legal guardianship arrangements.

Participants will also rehearse problem solving steps and learn a coping strategy that can help reduce stress for families of adolescents with autism: positively reinterpreting challenges or difficult events as opportunities for growth. “Even if you can’t change the stressor, you can change how you think about it,” Smith says.

Smith’s emphasis on family counters what Shattuck says is the dominant approach to studying autism. Most autism research, he says, “presumes there’s something defective with the person, and if we want the person to have a better outcome, we need to fix the person.” Shattuck believes researchers should also seek ways to improve the wider social context for adults with autism, from strengthening housing and vocational support services to educating police departments about aspects of autism that might influence police encounters.

Toward that goal, Shattuck is teaming up with community-based programs that are testing innovative interventions for adults with autism. He plans to study how effective the programs are and how readily they could be scaled up to work elsewhere. “There’s a lot of cool stuff happening,” he says.

In Jonas Moore’s experience, such services are badly needed. With the help of a good therapist, he has built a life that he finds fulfilling. “There are certain social situations I will not go into,” he says. “But at least I have friends. Before I didn’t want to have anything to do with socializing or friendship.”

Knowing that research is happening makes Moore feel optimistic, he says. “It means that people like me are going to get more help. We’re human beings too and we want to be treated with respect, want to be understood, want people to be patient with us and not to assume that we’re trying to be difficult.”

I