Summer Is Coming

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Summer is coming.  At the very least a summer attitude has been around for a while now: shorts, flip flops, and warm weather.  By now many families on the Spectrum have had their annual CSE meetings to plan for the summer and next year. A funny thing happened; we had our meeting for Mike at our district’s Special Ed office.  For the last few previous years when Mike was attending Nassau BOCES Rosemary Kennedy School, we went there and participated via phone conference at a table where his teachers and service providers sat.  Those teachers and providers were all very much on the ball; having sent us copies of new goals and objectives to review before the meeting actually took place.  Smooth as silk.

This year, not so much.  Maybe it was the break in routines for both us and the district CSE, who hadn’t physically seen us in for at least 3 years.  Everything was going really well as the teachers and service providers from Island Trees Memorial Middle School reviewed Mike’s progress this year, his first at the school.  The district’s psychology chairman who was running our meeting suddenly realized that Mike was 14 this year, and started the discussion about pre-pre-planning his transition from middle school to high school and (presumably) beyond.  He spoke glowingly about how much progress Mike had made both behaviorally and academically, and that maybe (!) Mike would make that transition back into district, since the district Special Ed programs and curricula had itself grown and expanded.

Blah, blah, blah…

As my wife and I looked at each other, we knew we had the same thought process simultaneously: no effing way in hell is Mike ever, ever, ever going back to district schools.  Ever.  He was what we termed their ‘guinea pig’ many years before as the district essentially began their fledgling, rudderless, eternally-incompetent start to their Special Education program; subjecting him to different, often divergent methodologies of teaching and addressing autistic behavior.

Ummm, no. Hell no.

Well, this started an avalanche of unforseen and unintended discussion, so much so that it wasn’t until we got back home that we realized that we were derailed, and did not go over any of next year’s goals and objectives.  The good thing was that we never signed any documents at the end of the meeting indicating that we agreed with all that was discussed during the CSE.  As we learned many years ago, never sign anything at a CSE other than an attendance sheet.  As embarrassing as it was for 2 parents who consider themselves relatively ‘on top of things’ to forget to review our son’s goals, it was not an irrevocable faux pas.

My wife promptly called the district CSE, informed them of the oversight, and was able to have a copy of next year’s goals mailed to us for review.  After the goals came in the mail, she went over each of the goals with the parent trainer who visits almost weekly, and was able to break down the goals, or tweak them.  She scheduled a telephone conference with Island Trees’ teachers and providers and went through what changes we (she) wanted implemented in the goals.  She then told them to make the changes or we would unfortunately need to schedule another CSE meeting before this school year ends.

Did I mention that my wife rocks? She is ‘Autism Warrior Mom’ personified.  

Summer is coming.  That means day camp, swimming, ice cream and all that good stuff.  I hope all your kids’ goals and objectives have been addressed to your satisfaction, so that you can enjoy summer with them.


MTV To Highlight An Autistic Man’s Transition To Adulthood

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MTV is putting a spotlight on the ups and downs facing those with disabilities as they transition to adulthood, with a documentary-style series following a 21-year-old with autism.

Chad DenDanto, left, who has autism, is one of three young adults whose lives are documented by filmmaker Andrew Jenks on MTV's

Chad DenDanto, left, who has autism, is one of three young adults whose lives are documented by filmmaker Andrew Jenks on MTV’s “World of Jenks.” (MTV)

Chad DenDanto, now 23, is one of three young adults featured on the network’s “World of Jenks” premiering Monday at 11 p.m. ET. The show, beginning its second season, features host and documentarian Andrew Jenks living with each subject for a year and filming their journeys.

In addition to DenDanto, Jenks also follows Kaylin, a fashion designer who has battled cancer, and D-Real, a street dancer who overcame his gang lifestyle and hopes to inspire others.

DenDanto — who is diagnosed with pervasive developmental disorder, which is on the autism spectrum, and attention deficit hyperactivity disorder — first appeared on the show in 2010 as the subject of a half-hour episode. But now Jenks takes a more in-depth look, moving into DenDanto’s Port Jervis, N.Y. home and tagging along for what’s described as the “biggest year of his life.”

“We realized (at MTV) that we had an opportunity to humanize and destigmatize what it’s like to have autism,” the show’s host, Jenks, 26, of New York, said. “One in 88 American children have autism now. It’s something prevalent that could use more mainstream media attention.”

DenDanto’s television debut nearly three years ago showcased not only the daily issues he faces having autism — including hypersensitivity to smells and noises, such as his classroom bell or cars honking, or severe anxiety over deviation from his schedule — but also his sense of humor and his sensitivity to being treated differently.

This season, viewers get to know DenDanto as he graduates from high school, tries to find a job and begins dating.

“During the first episode you’re thinking, ‘OK, one of the guys on the show has autism. That’s what his story is about.’ After the last episode you realize Chad is really funny, he has a great relationship with his girlfriend, he loves food and Italian culture and fart jokes, and you just know him as Chad. Autism no longer defines him,” Jenks said.


Here’s a clip from Season 1 featuring Chad and Andrew Jenks at the beach: 

It’s Still Only September

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As many of you know, Mike started in a self-contained class this year at Island Trees Memorial Middle School.  To say that we were thrilled (including Mike) is a gross understatement, but with that enthusiasm brought a lot of anxieties to the surface, some of which I posted in earlier blog entries.  Mike loves to draw and sees himself as quite an artist, and has had his artwork featured in his former school’s notecards, etc.; he often tries to draw perfect copies of pictures from his books, and often obsesses over not getting it ‘quite right’.  I don’t think he expected two of his new classmates to also have artistic talents, and he sees this as diminishing his own talents somehow; akin to being in a three-way tie, there can be no clear-cut ‘best artist’, which frustrates him to no end.  He hates to lose, even if he actually doesn’t; in the past has displayed such poor self-image for coming in second, or getting a silver medal.  Yesterday he came home from school and had a mini-meltdown of sorts as described by my wife; accompanied by a far-reaching story that involved two classmates, punctuated with terms like “I poked him”, “he told me to stop touching him”, “she helped me up off the ground” and promises that “I followed the rules”.  Surely, we were certain ‘something’ had happened in school, but no mention was made in his Communication Book.  After a first day back after a 4-day weekend, a semi-difficult day in school, and the realization that his after-school teacher (who he would rather not deal with) would be arriving soon, I would probably have a little melt-down too. 

Why am I bringing all this up? To remind parents on the Spectrum not to get lulled into a sense of contentment after a brief period of progress.  Take a breath, by all means, to get a ‘lay of the land’.  Then get back at it: contact teachers to make sure services are being provided, discuss even minor behaviors that may be occurring, try to understand this year’s new dynamic your child is in, maintain structure and continue to communicate.  These are the ways your child made progress in the past and they will be key to future success as well.  Sometimes we need to remember that preparing our children for lasting success is the mother of all marathons; not the 100 yard dash it always feels like it is.  It’s still only September.  -Ed

School Planning For Autism Spectrum Disorders in 500 Words Or Less

A child with an autistic spectrum disorder does not intuitively understand the social world. Severely affected kids may have little apparent interest in people around them. Someone with mild impairment may be quite motivated socially, but lacks the skills to initiate or maintain social exchange or play. Regardless of whether the diagnosis is autism, Asperger’s syndrome or pervasive developmental disorder (PDD)-nos, this difference in social development defines the disability.

Educational planning for children with autistic spectrum disorders is often complex and difficult to negotiate. When children have severe impairments, they often end up in specialized classrooms — and sometimes are mainstreamed too quickly. For children more able to integrate into mainstream settings, an appropriate balance between class time and services to address their special needs can be hard to define. They benefit from, and hopefully enjoy, time with mainstream peers and teachers, but they still are behind developmentally and require services.

The bottom line in educational planning, however, is this: As long as a child continues to show symptoms of an autistic spectrum disorder of any kind, he or she requires continued and targeted special services. Even children with mild social impairments, who are able to get by in mainstream classes and frequently do not act out in any way, require services. To meet a child’s long-term potential, we must define and develop a long-term plan that addresses the often subtle social and communication skills that lag behind peers.

As the school year beings, here’s an overview of educational planning (in 500 words or less):

1. Behavioral therapy is the core intervention.

For intense impairments, a self-contained classroom with an autism-specific behavioral program is the quickest way to catch a child up. With milder impairment, children still benefit from direct instruction. As long as symptoms of autism persist, children require ongoing behavioral intervention, considering both individual and group interventions, to teach core social skills. Exposure to typically developing children alone doesn’t accomplish enough. If they could instinctively learn from peers, they probably wouldn’t have autism.

2. Speech language delay is part of the autism diagnosis.

Regardless of how high-functioning children with autism appear, they have language deficits. It’s a defined part of the diagnosis. Some have profound delays in expressive skills and comprehension, but for others the delay is more subtle.

Pragmatic language refers to all the unspoken, nonverbal aspects of human communication. Pragmatic language delays are inherently part of having autism, so children require ongoing speech-language therapy. Importantly, pragmatics are impossible to quantify, so we cannot rely on test scores to define needed services. As long as social awkwardness, lack of awareness, or communication concerns persist, skillful language intervention has a role.

3. Daily repetition is needed to learn social skills.

If the absolute most important thing in the world was for your child to become a concert pianist by age 16, she would have to practice multiple hours almost every day to get there.

Similarly, for children with autistic spectrum disorders the development of social and communication skills is the absolute most important thing in the world. Their educational plan, considering what happens both in and out of school, should include daily reinforcement through a variety of services. As children catch up, or for those with very mild impairment, the intensity can be decreased.

4. Monitor the need for related services.

Occupational therapy addresses fine motor, handwriting and sensory concerns when present, all of which are common with autism. Physical therapy addresses primarily gross motor concerns. Psychoeducational testing should look for these types of impairments, with an emphasis on daily living and adaptive life skills.

5. Monitor for other academic difficulties.

Children with autism frequently have symptoms of attention deficit/hyperactivity disorder (ADHD). They also can have learning disabilities. Obsessive, rigid thinking may affect classroom performance. On a more subtle level, pragmatic difficulties impact their ability to understand and interpret reading assignments, social studies, and other work. This means they likely will need ongoing intervention to address a broad range of educational difficulties.

6. Many children with autism need more support during unstructured time than structured time.

The social rules in a classroom are simple: Sit down. Be quiet. Raise your hand when you want to speak. On the playground, in the lunchroom, and during recess social rules are constantly in flux. A recent study suggested half of children with autism become victims of bullies, which is much more likely during unmonitored time. Planning should address this unstructured, often unsupervised time of the day.

The Business World’s New Geek Chic

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I don’t know if I necessarily agree with this premise despite the fact that I’m sure it happens.  While this article spells fairly good news to people with Asperger’s, ADHD and Dyslexia, it does nothing for those with plain ol’ Autism, PDD-NOS, etc.  This article may fly in the face of current conventional thinking that says 1 out of every 3 people diagnosed with Autism have “no paid job experience, college or technical schooling nearly seven years after high school graduation.”  Every business wants to find its ‘Rain Man‘; the savant who can sift through reams of mathematical data to find that one gold nugget to bring that particular business to the forefront.  Only 10% of the Autistic population have specials skills which range from “splinter skills” to “prodigious” savants. 

“Among the 10% of persons who are autistic, there is a wide spectrum of savant abilities. Most common are what are called ‘splinter skills’ such as obsessive preoccupation with and memorization of sports trivia, license plates, maps or things as obscure as vacuum cleaner motor sounds, for example. ‘Talented’ savants are those persons whose special skills and abilities are more specialized and highly honed making those skills obviously conspicuous when viewed over against over-all handicap. Finally there is a group of ‘prodigious’ savants whose skills are so spectacular they would be conspicuous even if they were to occur in a non-handicapped person. There are probably fewer than 50 persons living worldwide who would meet the high-threshold definition of prodigious savants, and approximately one-half of that group would be autistic savants.”

I guess I’m glad the business world is aware of the attributes that those with Asperger’s possess.  I only hope that when that proverbial gold nugget is found, the contributions of those on the Spectrum are duly recognized, with part of the bounty shared with the Autism community to further promote awareness, education and opportunity.-Ed

In Praise of Misfits

Why Business Needs People With Asperger’s Syndrome, Attention Deficit Disorder and Dyslexia

In 1956 William Whyte argued in his bestseller, “The Organisation Man”, that companies were so in love with “well-rounded” executives that they fought a “fight against genius”. Today many suffer from the opposite prejudice. Software firms gobble up anti-social geeks. Hedge funds hoover up equally oddball quants. Hollywood bends over backwards to accommodate the whims of creatives. And policymakers look to rule-breaking entrepreneurs to create jobs. Unlike the school playground, the marketplace is kind to misfits.

Recruiters have noticed that the mental qualities that make a good computer programmer resemble those that might get you diagnosed with Asperger’s syndrome: an obsessive interest in narrow subjects; a passion for numbers, patterns and machines; an addiction to repetitive tasks; and a lack of sensitivity to social cues. Some joke that the internet was invented by and for people who are “on the spectrum”, as they put it in the Valley. Online, you can communicate without the ordeal of meeting people.

Wired magazine once called it “the Geek Syndrome”. Speaking of internet firms founded in the past decade, Peter Thiel, an early Facebook investor, told the New Yorker that: “The people who run them are sort of autistic.” Yishan Wong, an ex-Facebooker, wrote that Mark Zuckerberg, the founder, has “a touch of Asperger’s”, in that “he does not provide much active feedback or confirmation that he is listening to you.” Craig Newmark, the founder of Craigslist, says he finds the symptoms of Asperger’s “uncomfortably familiar” when he hears them listed.

Similar traits are common in the upper reaches of finance. The quants have taken over from the preppies. The hero of Michael Lewis’s book “The Big Short”, Michael Burry, a hedge-fund manager, is a loner who wrote a stockmarket blog as a hobby while he was studying to be a doctor. He attracted so much attention from money managers that he quit medicine to start his own hedge fund, Scion Capital. After noticing that there was something awry with the mortgage market, he made a killing betting that it would crash. “The one guy that I could trust in the middle of this crisis,” Mr Lewis told National Public Radio, “was this fellow with Asperger’s and a glass eye.”

Entrepreneurs also display a striking number of mental oddities. Julie Login of Cass Business School surveyed a group of entrepreneurs and found that 35% of them said that they suffered from dyslexia, compared with 10% of the population as a whole and 1% of professional managers. Prominent dyslexics include the founders of Ford, General Electric, IBM and IKEA, not to mention more recent successes such as Charles Schwab (the founder of a stockbroker), Richard Branson (the Virgin Group), John Chambers (Cisco) and Steve Jobs (Apple). There are many possible explanations for this. Dyslexics learn how to delegate tasks early (getting other people to do their homework, for example). They gravitate to activities that require few formal qualifications and demand little reading or writing.

Attention-deficit disorder (ADD) is another entrepreneur-friendly affliction: people who cannot focus on one thing for long can be disastrous employees but founts of new ideas. Some studies suggest that people with ADD are six times more likely than average to end up running their own businesses. David Neeleman, the founder of JetBlue, a budget airline, says: “My ADD brain naturally searches for better ways of doing things. With the disorganisation, procrastination, inability to focus and all the other bad things that come with ADD, there also come creativity and the ability to take risks.” Paul Orfalea, the founder of Kinko’s and a hotch-potch of businesses since, has both ADD and dyslexia. “I get bored easily; that is a great motivator,” he once said. “I think everybody should have dyslexia and ADD.”

Where does that leave the old-fashioned organisation man? He will do just fine. The more companies hire brilliant mavericks, the more they need sensible managers to keep the company grounded. Someone has to ensure that dull but necessary tasks are done. Someone has to charm customers (and perhaps lawmakers). This task is best done by those who don’t give the impression that they think normal people are stupid. (Sheryl Sandberg, Mr Zuckerberg’s deputy, does this rather well for Facebook.) Many start-ups are saved from disaster only by replacing the founders with professional managers. Those managers, of course, must learn to work with geeks.

Geekery in the genes

The clustering of people with unusual minds is causing new problems. People who work for brainy companies tend to marry other brainy people. Simon Baron-Cohen of Cambridge University argues that when two hyper-systematisers meet and mate, they are more likely to have children who suffer from Asperger’s or its more severe cousin, autism. He has shown that children in Eindhoven, a technology hub in the Netherlands, are two to four times more likely to be diagnosed with autism than children in two other Dutch towns of similar size. He has also shown that Cambridge students who study mathematics, physics and engineering are more likely to have autistic relatives than students studying English literature. Most employers are leery of hiring severely autistic people, but not all. Specialist People, a Danish firm, matches autistic workers with jobs that require a good memory or a high tolerance for repetition.

More broadly, the replacement of organisation man with disorganisation man is changing the balance of power. Those square pegs may not have an easy time in school. They may be mocked by jocks and ignored at parties. But these days no serious organisation can prosper without them. As Kiran Malhotra, a Silicon Valley networker, puts it: “It’s actually cool to be a geek.”

Dating On The Spectrum

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From Awkward to In Love

Dating Workshop Helps People With Asperger’s Syndrome

Useful Advice: Participants in a workshop for people with Asperger’s syndrome discuss tips for dating and socializing.

Useful Advice: Participants in a workshop for people with Asperger’s syndrome discuss tips for dating and socializing.

By Rukhl Schaechter

Sitting in a circle, the group of nine men and women giggled nervously as they discussed things not to say or do on a first date.

To an outsider, their suggestions might seem obvious.

“Don’t talk about your last boyfriend or girlfriend,” one plump woman ventured with a giggle.

“Don’t tell them what you don’t like about them,” a broad-shouldered man with curly black hair suggested. “Like, ‘Hey, I don’t like that tic of yours.’”

The others burst into laughter, nodding in agreement.

The discussion was not a training session for recovering fans of George Costanza from “Seinfeld.” The recent session, led by moderator Jeremy Hamburgh in a classroom at the JCC in Manhattan, was part of a dating workshop for young people with Asperger’s syndrome and other special needs. Sponsored by Adaptations, a program that aims to strengthen the independent living skills of special needs individuals, the sessions provide participants with a safe environment to learn about relationships, intimacy and sexuality — areas that individuals with Asperger’s are often ill-equipped to negotiate, because of their inability to perceive many social cues.

Now, these discussion sessions are poised to reach a far greater audience via the Internet. With a grant from the Daniel Jordan Fiddle Foundation, which focuses on adults on the autism spectrum, Adaptations is developing an online dating site for people with Asperger’s and other developmental disabilities.

Unlike other sites that claim to serve people with Asperger’s, the Adaptations site will use a rigorous screening process to ensure that only people with special needs can join the online group or view its participants. The site will also provide free step-by-step dating advice and offer users help on the meetings the program generates. The site will include a blog and a discussion board, both of which will be open to parents, guardians and educators.

Since its inception seven years ago, Adaptations has attracted some 300 members. In addition to the dating workshop, the program today includes a support group for members who identify as lesbian, gay, bisexual or transgender. There’s also a ”girlfriends group,” which aims to help women develop meaningful friendships with other women, and a sports club for male friendships.

Asperger’s syndrome is an autism spectrum disorder characterized by significant difficulties in social interaction, and by restricted and repetitive patterns of behavior and interests. People with Asperger’s differ from those with other autism spectrum disorders in that they generally have normal intelligence and near-normal language development.

“As far as I know, Adaptations is the only program in the country that combines dating, socialization support and career help, all in an integrated community center,” said Allison Kleinman, director of Adaptations.

The program was started by the mother of an Asperger’s child. It has a close relationship with the Seaver Center for Autism Research and Treatment at New York’s Mount Sinai Hospital. Twice a month, a psychologist and several assistants from Seaver teach social skills to Adaptations members. Adaptations itself is part of the Center for Special Needs at the JCC of Manhattan, which is also directed by Kleinman.

Many participants in the dating workshop have already developed meaningful relationships and have even begun to take initiative.

“Now when I’m finished with a session, one of them will say, ‘Hey, guys, let’s go out to dinner!’” related Paige Weinger, a doctoral student at the Seaver Center.

Member Danielle Lazzara, 30, said that since joining Adaptations she no longer feels isolated, and Emanuel Frowner, 31, is happy that he can be himself “without being judged.” He has also been lucky romantically.

“I met a lady, named Cee Gee, who joined Adaptations in May of 2010, and now we are in a great relationship,” Frowner enthused.

“This is becoming a major focus in the field of autism spectrum disorders,” said Jill Brickman, a clinical psychologist with a private practice in midtown Manhattan. “People with autism have the same natural desire to be intimate as others, but they don’t have the social skills, which can be dangerous. They might try something that feels right to them, and then get arrested or be taken advantage of. Programs like these help these young people learn everything that’s involved in dating someone.”

Adaptations also partners with Job Path, a not-for-profit organization that enables people with developmental disabilities to find jobs. The program has started its own business venture, Adaptations Glassware Cooperative. The Brooklyn-based company trains employees to turn wine bottles into drinking glasses and has generated jobs for a number of Adaptations members.

One member, 39-year old Mark Dreyfus, has benefited from both the job assistance and dating aspects of the program. When he first joined, Dreyfus already had a job on Wall Street but couldn’t handle the stress of working with people, said Katrina Reese, Job Path’s assistant director of employment services. Through an individualized program, the Adaptations team found a work situation to address his needs. Today, he repairs computers in a quiet room of a Best Buy outlet while his co-workers deal with the customers at the front desk.

Dreyfus also found his fiancée at Adaptations. A wedding is planned for October at the Hebrew Institute of Riverdale for Dreyfus and his fiancee, Judy Fettman.

Fettman herself did have one criticism of the workshops: She found them intellectually unstimulating. “I would like to see political talks and lectures,” she said.

Transitioning Autistic Young Adults Need More Job Training

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1 in 3 autistic young adults lack jobs, education

Associated PressBy LINDSEY TANNER | Associated Press


CHICAGO (AP) — One in 3 young adults with autism have no paid job experience, college or technical schooling nearly seven years after high school graduation, a study finds. That’s a poorer showing than those with other disabilities including those who are mentally disabled, the researchers said.

With roughly half a million autistic kids reaching adulthood in the next decade, experts say it’s an issue policymakers urgently need to address.

The study was done well before unemployment peaked from the recession. The situation today is tough even for young adults who don’t have such limitations.

Ian Wells of Allentown, N.J., is 21, autistic and won’t graduate from high school until next year. He is unlikely to attend college because of his autism. He wants a job but has only found unpaid internships and is currently working part-time and unpaid as a worker at a fastener factory.

He’s a hard worker, with good mechanical skills, but has trouble reading and speaking, said his mother, Barbara Wells. She said his difficulties understanding social cues and body language can make other people uncomfortable.

“I’m very afraid” about his prospects for ever finding long-term employment, she said. “It keeps me up at night.”

The study, published online Monday in Pediatrics, was based on data from 2007-08. It found that within two years of leaving high school, more than half of those with autism had no job experience, college or technical education.

Things improved as they got older. Yet nearly seven years after high school, 35 percent of autistic young adults still had no paid employment or education beyond high school.

Those figures compare with 26 percent of mentally disabled young adults, 7 percent of young adults with speech and language problems, and 3 percent of those with learning disabilities.

Those with autism may fare worse because many also have each of the other disabilities studied.

The researchers analyzed data from a national study of kids receiving special education services, prepared for the U.S. Department of Education. About 2,000 young adults with one of four types of disabilities were involved, including 500 with autism.

It’s the largest study to date on the topic and the results “are quite a cause for concern,” said lead author Paul Shattuck, an assistant professor at Washington University’s Brown School of Social Work in St. Louis.

“There is this wave of young children who have been diagnosed with autism who are aging toward adulthood. We’re kind of setting ourselves up for a scary situation if we don’t think about that and how we’re going to help these folks and their families,” Shattuck said.

Government data suggest that 1 in 88 U.S. kids have autism and there’s evidence that the rate is rising.

Within the next 10 years, more than 500,000 kids with autism will reach adulthood, said Peter Bell, vice president for programs and services at Autism Speaks, an advocacy group that helped pay for the study.

“It’s a huge, huge issue,” Bell said. “Unfortunately there are many families that really struggle to understand what that transition ultimately entails. …They face the reality of having a child who may potentially not be able to have enough services to keep them busy during the day.”

“It’s only going to get worse …” Bell said.

His own 19-year-old son has autism and is being home-schooled and Bell has hired therapists to prepare him for jobs and other life skills.

Carol Schall, a special education policy specialist, said the results confirm smaller studies showing difficulties facing kids with autism as they transition into adulthood, and also highlight a need for better job training services offered in public schools for special education students.

She is involved in research at Virginia Commonwealth University investigating whether on-the-job training and teaching social cues to high school students with autism makes them more employable.

Kids are taught a range of practical skills and appropriate behavior. “It takes a much higher degree of intensity for them to learn skills” than for other kids, she said.

Preliminary results show this training has helped kids with autism find and keep jobs, she said.