Denial, Anger, Bargaining, Depression, Acceptance

These five stages of loss and grief are typically experienced by someone who loses a loved one when they pass. But for Curtis, who thus far has handled deaths of family members much more matter-of-fact than typical kids his age, it was a different kind of loss that brought about these stages of grief.

Up until a couple months ago, Caron was the only ed-tech Curt had ever had at school. She was there nearly every day for kindergarten, 1st grade, and 2nd grade. The person he could depend on to help him get from point A to point B, to explain the teacher's directions when all the other kids seemed to understand, the person who would lead him out of the cafeteria when it was too loud, the person who fostered relationships with other students when he couldn't figure out how to do it on his own. She was the person who stopped him from bolting out of the school when he was five and had him walking with his class and making friends over the next few years. To him, she was a huge part of surviving the school day when confusion loomed around every corner.

Denial: When Curtis learned in early November that it was time for Caron to move on professionally and that she would no longer be his ed tech he refused to believe it. He wasn't defiant, he wasn't particularly upset, he just believed that when push came to shove, Caron would still be there when he showed up that Monday after Thanksgiving break. Not only could he not imagine her not being there, he wasn't even willing to accept it as a possibility. He needed to see it to believe it and his defense mechanisms were on full alert. He denied the possibility that he would be going to school without Caron right up until that Monday following the break. He met his new ed tech with a quiet hello and an expression of concern as to what school would be like without his trusted confidant.

Anger: It didn't take much time after school resumed for denial to give way to anger. He hated Caron, he hated his parents and family, he hated his friends...there was enough anger for everyone in his life at this point. This wasn't expressed at school, where he is more likely to clam up than lash out, but it was prevalent at home and quite hard to deal with. What he was expressing as anger was clearly hurt that things weren't the same anymore and he missed the teacher and friend that had always been there for him. We had prepped him for a long time that someday he would have a new ed tech. and hopefully one day, not require one at all. But like most kids he lives in the moment...and getting by without Caron wasn't something he anticipated dealing with until he had to. But she was gone and he was pissed...and most likely very scared.

Bargaining: This is the only stage of grief not applicable to this situation. He never really believed Caron was leaving until she was no longer in the school and to my knowledge, never attempted to bargain for her to stay. He had questions and all kinds of concerns but attempted no bargains. Once she was gone, he knew she wouldn't be back. At least not in this capacity.

Depression: Curtis has a new ed tech, Miss Mallory, and she's been terrific. But in the days and weeks that followed Caron's absence he clearly mourned their relationship and exhibited aspects of depression. He said things like "I don't like my life anymore. I want to start over." He was more quiet than usual, would sometimes break down and cry, appeared slightly withdrawn, showed a loss of confidence and even mentioned a desire to hurt himself.

We knew he was getting used to a new situation and that this "depression" would likely be short-lived but as a parent, it's a difficult thing to experience. You only hope it's short-lived and that some of the things you are saying and doing are helping.

Acceptance: As we begin 2013, Curtis is working his way towards acceptance. Part of the reason Caron felt comfortable moving on when she did was because Curtis has some great friends in his class and they have been instrumental in getting him back to his old self and able to feel comfortable at school even without his trusted guide. Part of his frustration was centered around the fact that Caron knew him so well. She knew when the lunchroom or music class was too loud or when he needed a break or that he needed help tying his shoes and now he had to start from scratch with someone much less familiar with what makes him tick. But he has slowly been accepting the fact that in life, things change, and they don't always stay the way you want them too. It's a tough lesson but one that we all learn and his parents could hardly be more proud of him for braving through what's been the hardest life change for him to date.

For as long as I have known Curtis he has done some form of yoga. It has always been a good activity to get his body to calm down even when his body seems beyond his control. When he was younger, we did one of his Yoga Kids DVDs almost every evening to wind down. In the past year or two Curtis had not spent nearly as much time doing yoga as he had previously
- until now.

This past Halloween, Laura and I took Curtis to his first Kid’s Yoga class. Laura knew the teacher and spoke to her beforehand to let her know what to expect. We told Curtis that he could just observe this first class to get a feel for it. When we arrived at that first class, we happened to be the only people that showed up for the session. Curtis spent the better part of 20 minutes regressing into some outdated behaviors like bolting and hitting. He wasn't prepared to be the only student in the class and the circumstances likely proved too much to handle. Eventually we decided it would be best to remove Curtis from the situation and go home.

On the next visit, we raised the expectation for Curtis that he was to participate in three poses. Curtis ended up doing more than three poses that night but eventually got a little rascally and was rude to his yoga teacher. He also refused to participate in any conversations with anyone there. When we returned the following week it was pretty much the same scene as the
previous week with the exception of the conversational pieces. Curtis and I practiced some questions and answers after school that day and participated in 2/3 of the discussion.

By the fourth week Curtis was no longer fighting us to get through the door. He had a rough start to the class but after I pulled him out and talked to him about the other kids there he did better. It just happened to be the only other student’s first time doing yoga so Curtis was able to pull together to help the other kid. He also resisted the relaxation exercises at the end of class up until this point. When he did participate this week you could visibly see his whole body go calm.

Today marks the fifth yoga class and I can honestly say this week I enjoyed the entire hour at yoga with Curtis. This class had many more children than previous classes. He was crowded in and the teacher changed the 7 core poses that they had been practicing in the past classes. Curtis tried his hardest the whole time and for the first time was the teacher in “Yogi Says”, a game where the students lead the class through poses. With any new structured activity Curtis had a rough start, but hopefully these past two classes are an indication he is turning the corner and will look forward to yoga in the future.

Jamie, 1:1 Home Support

This morning Curtis opened up the bathroom door to ask me a question as I showered. He almost inevitably does this if I fail to lock the door and its happened countless times.

Curtis: "hey dad, can i take Debby to the back yard right now."
Me: "without me? I guess for a couple of minutes. Just five minutes we have to get ready for school"
Curtis: "okay, thanks

        *long pause*

Curtis: "how will I track the minutes?"
Me: "it's okay, i'll come get you."

Curtis is on his fourth day as a dog owner and has already run through a number of emotions. When we chose Debby ( Curtis named her) Curtis was not only up for bringing her home but also any dog at the Animal Welfare Society that wanted to come home. But then came the regret.

Curt has always displayed some Oedipus type traits and can't stand competing for moms attention with dad or anyone/anything else. As mom quickly got into the new family pet, Curtis started saying his life feels different now and he wishes we just got a rental dog. His discomfort in showing affection to Debby was met by frustration that mom and dad seemed to be loving time with the new dog. He was also trying to figure out what owning a dog actually means and didn't understand the immediate affections of display we had for Debby.

But this was just the first weekend and luckily Debby came pretty much house-trained and kid friendly. Curt is attempting to teach her commands and trying to get her to play as much fetch as possible and the relationship is growing. She slept at the foot of his bed last night and he was excited to see her after school. Typical of children with autism, Curtis is adverse to change. Lately he's had to deal with getting to know a new ed tech at school, adapting to an after school rec. program with 2 adults and 25 kids and now a new member of the family to compete for attention. 

There is very little change to routine that Curtis welcomes if any at all. While it's been trying at times, he's doing great, and his parents and support staff are proud of him. He's taking big challenges head on and figuring out he will come out just fine on the other side. We are amazed at the amount of progress he has made in just the past year and could not be more proud of how far he has come.


Greg, Dad

With estimates like these (1 in 88 children are diagnosed with autism, 1 out of 54 boys, annual costs of autism totaling $138 billion) it's increasingly refreshing to see more and more provisions being made to include children with sensitivity issues.

Any parent or caregiver who has taken a child to the mall to see Santa or the Easter Bunny knows the experience is often not great. To bring a child on the spectrum to an event like this is often worse, with noise and lines that detract from the experience and making it  more trouble than its worth.

Today we noticed our own Maine Mall was making special provisions for children with Autism and similar disabilities to meet Santa before the mall fills up with the usual distractions, yelling, and other loud sounds. So way to go mall, and we hope these types of events continue to pop up everywhere.


Events- Sensitive Santa


12/1/2012
Time: 8am-10am
Location: Santa's Train Set near Sports Authority
Contact: Stefanie Millette, 207-828-2063 x 224
Sponsored by: The Maine Mall

A special event for children who are sensitive to noise, the Santa Set will open before official mall hours to provide a quieter atmosphere for children with noise sensitivities including those who have autism or hearing impairment.

Perhaps the most successful Halloween to date. Curtis has reluctantly grown to embrace the holiday and hit 40 or so houses this year Trick or Treating with two of his closest friends. He also arranged and categorized his take.

Now in 3rd grade, Curtis will soon be expected to move on from the only ed tech he has ever known to help guide him though the school day.

Curtis and I started our closure processes last Friday. His growth this year and his ability to tap into every tool that we (as a support team) have instilled in him over the past few years has been very evident. I have said since day one that my goal with Curtis was to, eventually, work myself out of a job. Over the past 3 and a half years I have acted as a mirror for him, so that in an environment where he doesn’t exactly feel comfortable or know “what to do” he can look at me, model, learn and eventually live the behavior that is desirable.

We are at the point in our working relationship where continued growth will happen by being set “free” and exploring every tool he has learned to confront his fears.   I told him last Friday in the afternoon.  We packed up his school bag and said goodbye to his class an hour early. I told him that we were going to go for an old school walk – on the train tracks behind the school like we use to when he was younger and needed more running time and space from the chaos of a school environment..

I did inform one of his best friends in the room of this news earlier in the day so that when we did leave the classroom, he could give Curtis a big hug to (unbeknown to Curtis) make him feel good – to feel connected before the big news dropped. The look in his friends eyes as he was saying goodbye to Curtis for the weekend (knowing the news that I was about to share) spoke of the love and loyalty he has for Curtis. His friends, more then anyone, have made me feel the best about my decision to move on. They are ready to pick up right where up where I will leave off.

We made a stop by my car to grab the half dozen eggs that I brought, thinking he might want to chuck a few at a tree after he hears the news that Ms Barber was going on to another job. We stopped at a bench once we got to the trail and I told him that I had something important to tell him. I started by sharing some “remember when you when you first got to Presumpscot” stories to paint the picture of what he looked and acted like when I first meet him at school - timid, mute, anxious, confused, isolated and unpredictable. I then began to share a reminder of what my job was and is now – and how even that looks different because of how much growth he has undergone.

I told him that it was job to make him feel safe, secure, and comfortable at school so that he can learn.

And learning he has done – he has advance skills in math, reading, and writing.

I also mentioned how my job was to help him make friends and find the good (or the humor) in all those around us; he also has surpassed what his support thought was possible in this area. He has a very diverse school filled with friends of all ages and backgrounds that give him high fives daily, and some special ones that get the hugs. I finally told him that it is now my job to let him go when he was ready – and he may not be able to see it, but I can and it makes those around him very proud and happy and excited about the future.   

His first reaction was backing away from me and saying over and over again, “You’re joking Ms Barber – right? Say you’re joking. Don’t kid with me. Are you lying? ” He then wanted to know if  I didn’t like him anymore and wondering why I was quitting on him and quitting on my job. And his final verbal reaction was telling me that I wont like my job and I will be back working with him by April.

His nonverbal reaction was shredding leaves on the ground and tearing his snack bag with fury in his rambling and in his body language. Before we started to process all these thoughts on our walk, I wanted him to start throwing eggs. I did the first one to model – I threw an egg at a tree while also letting out my verbal feeling, “I am so nervous about this change!”  He then stepped up to the tree, nailing it smack in the middle with an egg saying, “I’m so angry at you Ms Barber!”

It will be the most important job I face over the next three weeks to work through every feeling he has around this transition and to help him into a more clear space. I gave the school a month notice so that I had plenty of time to honor all of these first reactions and leave him in a place where his skin is a bit thicker, he feels brave as an individual and is ready for the new support to come in - or at least ready to fake it.  He will continue to have full support in the classroom.  But it is my belief that, b/c Curtis is an out of sight, out of mind sorta guy, he will step up to the plate when I'm gone.

I have a feeling that he will come into himself as a individual more through this change and lean more from his friends. This ultimately has been my job all along -  to show him the joy of true connection and through this transition he will find his true connection to himself and to his peers.

Caron, 1:1 School Support

Screen Time

ScienceDaily reports that children with ASDs "tend to be preoccupied with screen-based media."

"Alex, hear that?"

My son peers into his iPad as if peering into a crystal ball. "Alex?" I walk over to the couch and see Teletubbies on the screen, sometimes Elmo and crew. Alex peers closer; I see his new mustache in the glow of the screen. “Alex, did you hear me?” He grips his headphones as if I had lunged to seize them off him – which I will have to do about 9 tonight, Alex’s bedtime as he nears age 14.



The study by Dr. Paul Shattuck at the Brown School at Washington University looks at how children with ASDs spend screen time. "We found a very high rate of use of solitary screen-based media such as video games and television, with a markedly lower rate of use of social interactive media, including email," Shattuck says.

TO: Alex  

FROM: Your father 

SENT: Mon Oct 22 2012, 9:13 p.m.  

SUBJECT: Go to bed

Nearly 60.3 percent of the youths with ASDs were reported to spend "most of his/her time" watching television or videos. "This rate appears to be high, given that among typically developing adolescents, only 28 percent have been shown to be 'high users' of television," Shattuck says. As cognitive skills increased and children with ASDs grew older, use of social media increased.

“Dad?” says my other son Ned. “When can I use the iPad?”

Ned deserves the iPad, too, but the thingAlex doesn’t seem too interested in social media. He sits evening after evening in the flow the bathtub faucet, never washing his hair unless I ask him to, unless I dribble the shampoo into his palm and teach him to rub it into his hair with both hands. I asked his teachers to teach him to use both hands for things – aren’t they doing that? Often, Alex sits in the tub and stares to the right. After half an hour or so, I hear the water go quiet and Alex emerges into the living room, usually wearing nothing. Did I mention age 14? keeps Alex quiet in the evenings. I ashamed how much I like the quiet; I know I’m not helping Alex. “Soon, Ned. Alex, let’s hit the bath!”

"This proclivity for screen time might be turned into something we can take advantage of to enhance social skills and learning achievement, especially recent innovations in devices like iPads.”

I’m ready to take advantage of anything.


Jeff Stimpson lives in New York with his wife and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon) and has a blog about his family at jeffslife.tripod.com/alextheboy. He contributes to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Curtis no longer bolts. Not to be confused with no longer likes to run. He still clearly gets a stimulating "high" from running that he can't match elsewhere and takes every opportunity he gets to play tag.

Movies and T.V. are still a source of constant confusion. However, where he used to just watch a movie without understanding any of it, today he feels his way through movies with a barrage of questions. He follows the plots of books and movies much better now. However, most recently he saw a good portion of "Super-Size" me and was completely thrown by the fact that it's non-fiction. That one was a question Bonanza.

He still eats pizza the same way as ever, meaning, if there is cheese dangling from the slice, don't even offer it. He'd rather go hungry than eat that freakishly deformed slice of pizza.

He's almost got butt-wiping down but shoelace tying is amazingly hard.

He still isn't down with a spontaneous parade. Really, how dare anyone suggest a parade out of the known parade parameters? When his Nana bought some parade hats and kazoos last weekend and suggested a parade, he quietly retreated to her room and ripped the paper lining of the hats to shreds.

He challenges himself more, recently taking on after school rec. and staying after school until mom gets out of work. We would never have done this to the staff even a year ago.

He's heard all the swears and continues to experiment with how they are used in language. That part has been interesting and often hilarious. But more controlled than I would have thought. Most of the time.


Greg, Dad

Here's a reprint from the Huffington Post. Great article.

http://www.huffingtonpost.com/2012/09/27/autism-employment-white-collar-jobs_n_1916611.html


A few weeks ago, Matthew Koenig, 24, was doing data entry for below minimum wage at a supervised employment center for people with disabilities in St. Paul, Minn.

Koenig, who has autism, was happy to have a job in a tough economy, but soon realized the workplace wasn't well suited to him. His co-workers "had too broad of a range of [disabilities]," he said. "Some people had really serious problems."

Moreover, employees were graded using "a time study to measure efficiency," he said, "but the nature of my disability means I lack certain kinds of motor skills, so I can't type as quickly as other people."

A sleep disorder caused Koenig to be late a few times, and since then, "they haven't asked me to come in for a few weeks." He acknowledged that "part of it was my fault," but the combination of a menial job and an abrupt dismissal "made me feel like I'm not worth anything."

Koenig, who scored a 1450 out of 1600 on his SATs, knows this isn't true. "Despite my autism, I have good instincts about people, and I try to do the right thing," he said in a self-assured staccato. "I'm perfectly willing to stick around, and ultimately my goal in my career is to make sure the job gets done."

The simple, repetitive tasks of his last job didn't match his intelligence, needs or aspirations. Instead, he said he wants to use the unusual outlook afforded by autism to build a meaningful career in the tech sector.

"I'd like to help come up with ideas for entertainment and video games," he said, "because one of my strengths is that I have an unconventional train of thought that other people don't have."

Mindful and ambitious, Koenig is one of a growing number of young people with high-functioning autism who are increasingly focused on building meaningful careers. A cadre of groups have begun developing new ways to prepare these young people for white-collar jobs.

AN 'AUTISM TSUNAMI'

They face a daunting set of obstacles. Job prospects for adults with autism in the U.S. are crushingly bleak. Nationwide, their combined unemployment and underemployment rate is around 90 percent.

The employment situation owes much to the basic nature of autism spectrum disorders (ASDs). Typically diagnosed in early childhood, autism is a developmental disability that can impair communication skills, speech, fine motor skills and behavior. In very mild cases, symptoms may be limited to impaired social skills and difficulty registering empathy. In severe cases, individuals face enormous challenges with verbal communication, show little interest in other people, exhibit extreme sensitivity to light and sound, and develop obsessive behaviors.

Some researchers estimate that up to 1 percent of U.S. adults have ASDs -- about 3 million people -- but the range in severity and the historical stigmas surrounding autism have made it hard for scientists to collect population data. The unemployment estimates take the entire population into account, including those with severe symptoms.

There is currently no established cause of autism (though theories abound), nor is there a cure.

Another pressing mystery for researchers is why diagnoses of autism among children in the U.S. jumped 70 percent between 2002 and 2008 -- from one in every 150 kids to one in every 88. Autism Speaks, a large national nonprofit, has estimated that during the next 10 years, more than 500,000 young people with ASDs will turn 18.

But if current trends continue, many of them won't receive the basic education required to join the competitive workforce.

According to a 2011 study, only 56 percent of young adults with autism in the U.S. graduated from high school, and only 14 percent started college. How many graduated from college is unknown, but experts say it's likely to be fewer than half of those who started.

The high dropout rates among students with ASDs are due in part to the structure of school itself. People with autism often have difficulty meeting deadlines, managing their time and asking for help when they're confused -- all basic academic skills.

"Schools still struggle to understand autism and how it's different from other disabilities," said Peter Bell, executive vice president of programs at Autism Speaks. "One of the fallacies we have to overcome is that IQ is a meter of disabilities. In 2003, we learned that 60 to 70 percent of people with autism have average or above average intelligence, up from what was thought for decades to have been only 30 to 40 percent."

Despite the evidence, Bell said, some educators are still unequipped to address the needs of kids with developmental disabilities and above-average IQs.

"We clearly have a crisis looming," said Brenda Weitzberg, the founder of Aspiritech, a Chicago nonprofit that employs young adults with autism. She warns that unless there are adequate jobs available, even the most effective skills training will be of little use.

"I have no doubt that more of these kids are going to be better prepared" for high school and college, Weitzberg said. "But after they finish school, then what's going to happen to them?"

"Some people refer to it as the 'autism tsunami,'" said Bell. Unless more employment opportunities are created for people with autism in the coming years, hundreds of thousands of young adults with autism will join the ranks of the unemployed or underemployed.

THE NEXT BEST HOPE

The news isn't all bad. Two decades of well-funded research and treatment have produced young adults with autism who are better prepared to join the workforce now than ever before.

"The skill sets of these kids are so much higher than we ever gave them credit for and what people in the norm tend to give them credit for," said Gary Moore, founder of a recently opened autism career-training school, the nonPareil Institute, in Plano, Texas.

Bell at Autism Speaks noted much the same thing. "There's no question that there's a segment of the [autism] population that has tremendous skills and that can be quite successful in sectors that we never considered before," he told The Huffington Post.

For workplace disability researcher Laurie Gutmann Kahn at the University of Oregon, it's all part of a broader trend toward viewing "people with ASD as having a different way of navigating the world, which can be extremely useful in a variety of professions," she said.

Marc Lazar, program director at Aspiritech, takes it a step further. "There's a growing recognition that high-functioning ASD individuals have qualities that neurotypicals don't," he said. (The autism community coined the term "neurotypical" to describe someone who is not on the autism spectrum.) "They can find details that most people miss, they're able to focus for long periods of time, and they really savor specific kinds of work like software testing, lab work and proofreading."

All of which leads to one conclusion, in Bell's view: "The autism population represents a pool of potential employees that corporate America needs to explore."

This is where autism career-training programs come in. By focusing on those young people with autism who appear best suited to function in a competitive workplace, organizations like Aspiritech and the nonPareil Institute are offering a small group of high-functioning adults the opportunity to decide for themselves whether to integrate into the neurotypical world.

In Chicago, Aspiritech aims to prepare people for competitive workplace demands while they hone their skills on software testing. Since it was founded in 2008, Aspiritech has employed more than two dozen adults with high-functioning autism, most of whom still work out of its main offices. Weitzberg, the founder, said she is proud of the fact that they have 18 corporate clients, including a number of large U.S. companies with which Aspiritech has competitive contracts.

In Plano, a different model is being developed with the same goal: to prepare each of the school's students, who have high-functioning autism, for an individualized, personally fulfilling white-collar career. Founded in 2009, the nonPareil Institute operates as part university campus, part vocational center. Students learn the finer points of video game and computer app design, while also building up their social skills and life strategies.

Both programs are also designed to create cultures of self-determination and healthy personal ambition.

"I didn't have a professional life before I came to nonPareil," said Renee McMurtry, a 21-year-old student from Fort Worth, Texas, who was diagnosed with Asperger's syndrome. Today, she has "opportunities that didn't exist before. ... I see myself doing a lot in the next few years, making money and being successful."

SILENT BARRIERS

As the autism community rallies together to prepare young people for the workforce and for white-collar careers, many of the nation's biggest employers have yet to return the favor. A number of them are still wrestling with basic questions about hiring individuals on the autism spectrum.

As Matthew Koenig, the young man in Minnesota, put it, "the conveyor belt of traditional employment puts you at a huge disadvantage with high-functioning autism, because you talk the way you do, and that's an automatic strike one."

Under the Americans with Disabilities Act, it is illegal to discriminate against qualified job applicants because they have autism, but experts say widespread discrimination continues. "They still do it. They'll just find another reason not to hire the person [with autism]," said an autism advocate, one of a half-dozen activists and autism experts who spoke to HuffPost about the slow pace of integrating people with autism into the white-collar workforce. None were willing to speak about employment barriers on the record, however, citing the sensitive nature of the subject. Employers were equally reluctant to be identified as having hired people with ASDs for white-collar jobs, noting issues of employee privacy and potential legal liability.

The conversations revealed three distinct concerns about hiring people with ASDs that persist for some employers, serving as silent barriers despite the law.

First, employers worry that they don't know enough about autism in adults to wade into the community, lest they make a mistake. Two people also said some employers don't know how to discuss job expectations, performance issues and potential limitations comfortably and respectfully with employees who have autism.

Second, some white-collar employers expressed hesitation about the administrative steps in providing "reasonable accommodation" for someone with autism, a requirement under the Americans with Disabilities Act.

One such accommodation in particular was cited more than once as a source of frustration: autism-related "job coaches." People with autism often need more help adjusting to new jobs and responsibilities than neurotypical workers do, and the coaches help them navigate new workplaces and learn their tasks.

Coaches are typically paid for by state employment agencies, not the employers themselves. But in interviews with HuffPost, autism advocates relayed complaints they had received that job coaches were "disruptive and didn't fit in with the rest of the staff" and "didn't know their way around the office." In one situation, an employer said, "the coach just came in and did the guy's job for him, while he sat there."

Kahn, the University of Oregon researcher, defended the provision of additional support for people with autism early in a new job, even if it is sometimes inconvenient. "A person with autism might not understand that you're supposed to talk to people at the water cooler. In those situations, they need someone who can explain it to them," said Kahn, "and maybe coach them and say, 'People are going to ask you about your weekend when you're at the water cooler. If you want to, you can tell them, "I'm really busy and need to get back to work."' That's what they need to hear."

The third silent barrier to hiring people with autism is by far the thorniest. Employers said privately that company lawyers suggested that hiring someone with autism could put them at a greater risk for legal liabilities, as well as higher health care costs.

Last year, a San Diego-area Comfort Suites hotel paid $132,500 to settle an Equal Employment Opportunity Commission lawsuit filed on behalf of a front-desk clerk with autism, who said he had been illegally denied a job coach when he requested one. Cases like this one have apparently bolstered the myth that hiring people with autism is especially complicated or that people with autism are somehow less reliable and more risky than neurotypical employees.

"ASDs still carry the 'Rain Man' stigma for a lot of the general public," said an autism advocate who requested anonymity to speak frankly. "[Employers] are just covering their asses."

To this day, many Americans have never met a person with autism, and millions rely on stereotypes and movies for the bulk of their opinions about people with ASDs.

Yet a huge wave of high-functioning young people with autism, like Matthew Koenig, are beginning to explore the possibility of meaningful work. Members of this new generation have learned to view their diagnoses less as disabilities per se and more as different sets of abilities. As they push the limits of their potential, one at a time, they simultaneously push the ball forward for the entire autism community.

"The reality of having autism is that in order to find our strengths, you've got to get to know us," Koenig said. "It's like an onion. You have to peel back the layers."