All Header Images © Daniel Voegelin http://www.danvoegelin.com/  
 
09/26/18

DDS Open Enrollment for the AUTISM WAIVER Oct. 17 – 31, 2018

DDS OPEN ENROLLMENT FOR THE AUTISM WAIVER WILL BE HELD

 OCTOBER 17th – OCTOBER 31st, 2018

Applications and information on the Autism Waiver are now available on the DDS/Autism division website and the MAC website.
Any enrollment forms submitted previously will be discarded.
Families must apply again during this open enrollment period to remain on the wait list.

Applications MUST be postmarked or emailed between October 17th and 31st

Important information on the Waiver:

  • This crucial program allows MassHealth eligible children with autism to access intensive treatments and services in their homes and communities.
  • The program is limited to children between the ages of 0-8 who are MassHealth eligible and at risk of residential placement now or at some point in the future.
  • Eligible children are chosen for Autism Waiver services on a lottery basis and once chosen, receive intensive in-home therapies, services and supports for 3 years, or until the child reaches the age of 9. After 3 years the child is eligible for less intensive step-down services until age 9.  The waiver also provides related support services such as community integration activities and respite.
  • For the application go to: DDS/Autism division website or MAC’s website
  • Click this link to find your local Autism Support Center to get help filling out the application

For more information contact Johanne Pino at jpino@massadvocates.org or 617-357-8431 x3234

Massachusetts Advocates for Children
        25 Kingston Street, 2nd. Floor, Boston, MA 02111
Tel. 617.357.8431 · Fax 617.357.8438 · massadvocates.org

PDF Version of this flyer

09/28/17

Lakes and pools can be deadly for children with autism. But tailored swim lessons can save lives

Statnews.com
https://www.statnews.com/2017/09/27/autism-children-water-swim-lessons/

Amusement parks, lakes, neighbors’ pools — they are dangers that families of children with autism have long known anecdotally to beware of.

Jessica Lapen discovered this about 10 years ago. She was at a family gathering at her parents’ home when she noticed that her son, Micah, was missing.

“He was 6 or 7,” she recalled. “We knew that he would leave safe areas. We found out that he had gone down the road to a neighbor’s house, and when they saw him, he was climbing the ladder to their above-ground pool.”

An authoritative study earlier this year put some numbers to the fear. Drowning is the most common fatal injury among children with autism, researchers found. Children with autism age 14 and younger are 160 times as likely to die from drowning as the general pediatric population, with drowning risk peaking from age 5 to 7.

Such cases make headlines many times each summer. Now, researchers are working to understand the risks and how to counteract them — including helping parents and swim instructors teach water safety to autistic children.

“The causes of drowning for kids with autism is multifactorial,” said Dr. Jeremiah Dickerson, a pediatric psychiatrist who directs the autism diagnostic clinic at the University of Vermont Medical Center. “Impulsivity is one part of it. They may not see the water as a danger, that they could fall in or that they could drown.”

The sensory aspects of water can also attract children with autism, though for different reasons, said Michele Alaniz, a behavioral therapist in California. “For autistic kids who seek out stimulation, they are attracted to the way it sounds, the play of light on it and the feeling of buoyancy and the way it feels on the body,” she said. For kids who are driven to isolating themselves from stimulation, on the other hand, “water can be very calming, especially under the water, where there is a muffling of external sound and a kind of quiet,” said Alaniz.

That can lead kids to submerge themselves in water and not realize the danger — or to not have the skills to act if they do.

“We’ve put these children in the pool, and where others would sort of cling to the wall and hold on, the ones with autism would just release and sink,” said Alaniz.

“Even when they know they’re in trouble, they may not have the communication, the language to say they need help,” said Dickerson. “And with the motor discoordination some of them have, they may not be able to pull themselves out of the water.”

Swimming safely

The good news is that research shows children with autism can learn to be safe around water. A study published in September in the Journal of Autism and Developmental Disorders offers preliminary evidence that even children with severe autism can learn techniques to avoid drowning.

“It’s more of a challenge to teach kids with severe autism,” Alaniz said. “But, yes, they can learn to swim safely, [with] skills like breath control and how to turn over in the water.”

Advocacy organizations, community centers, and schools are creating water safety classes for children with autism. Pathfinders for Autism offers a tip sheet for swim instructors who may encounter students with autism. Autism Speaks provides swim classes for children with autism and financial need with swim lesson scholarships, awarding them to 134 organizations in 31 states since 2014.

Some of those scholarships went to children at the Texas Swim Academy near Houston. Founder Kathleen McMordie, a nurse and swim instructor, explained that there are important accommodations needed for children with autism. The adjustments include getting them accustomed to being touched and to the feel of the water. Instructors may also have to teach lessons or parts of lessons in a different order than usual. These are among the reasons that swim lessons for children with autism are given individually, rather than in the usual group setting.

But the most important requirement, said McMordie, is being patient with the way children with autism receive, understand, and follow instructions. She gave the example of having children place their faces in the water, which is among the first lessons taught in swim classes.

“With neurotypical kids, you might just say, ‘OK, now, face in.’ But for a child with autism, it’s a little different. You say, ‘OK, put your face in the water.’ And then you wait.”

It takes more time for kids with autism to move mentally from instruction to action, McMordie explained. “You wait while they process: ‘OK, she said to do this, and now I do this with my head, and then I do this.’ And they put their face in.

“But if you don’t wait, and you’re just going, ‘Put your face in, put your face in, put your face in,’” she added, “you’re interrupting that process for them.”

In addition to giving autistic children more time with instruction, Dickerson also recommends taking a “comic-book approach” to swim instruction for autistic children by using pictures to help the children understand what they are told.

The Texas Swim Academy uses this method. “It’s just a picture of one of the instructors doing something, like putting our face in the water or kicking with a kick board,” said Patty McPherson, the school’s aquatics director. “We took pictures of them doing these things, then we laminated the pictures and use them to show what to do.”

Jessica Lapen credits such lessons with keeping her son, Micah, now 16 years old, safe over all the intervening years since that frightening day a decade ago.

“If the neighbor hadn’t found him back then, it would have ended very differently,” she said. “But after that happened, we really worked with him on learning to be water safe.”

 About the Author
11/23/16

Along the Autism Spectrum, a Path Through Campus Life

Photo

Crosby J. Gardner, with Michelle Elkins, the director of Western Kentucky University’s Kelly Autism Program, which provides an “educational, social and supportive environment so that those diagnosed with Autism Spectrum Disorder can achieve their potential as independent, productive and active community citizens.” CreditMark Makela for The New York Times

BOWLING GREEN, Ky. — Crosby J. Gardner has never had a girlfriend. Now 20 and living for the first time in a dorm here at Western Kentucky University, he has designed a fast-track experiment to find her.

He ticks off the math. Two meals a day at the student dining hall, three courses per meal. Girls make up 57 percent of the 20,068 students. And so, he sums up, gray-blue eyes triumphant, if he sits at a table with at least four new girls for every course, he should be able to meet all 11,439 by graduation.

“I’m Crosby Gardner!” he announces each time he descends upon a fresh group, trying out the social-skills script he had practiced in the university’s autism support program. “What is your name and what is your major?”

The first generation of college students with an autism diagnosis is fanning out to campuses across the country. These growing numbers reflect the sharp rise in diagnosis rates since the 1990s, as well as the success of early-learning interventions and efforts to include these students in mainstream activities.

But while these young adults have opportunities that could not have been imagined had they been born even a decade earlier, their success in college is still a long shot. Increasingly, schools are realizing that most of these students will not graduate without comprehensive support like the Kelly Autism Program at Western Kentucky. Similar programs have been taking root at nearly 40 colleges around the country, including large public institutions like Eastern Michigan University, California State University, Long Beach, the University of Connecticut and Rutgers.

For decades, universities have provided academic safety nets to students with physical disabilities and learning challenges like dyslexia. But students on the autism spectrum need a web of support that is far more nuanced and complex.

Their presence on campus can be jarring. Mr. Gardner will unloose monologues — unfiltered, gale-force and repetitive — that can set professors’ teeth on edge and lead classmates to snicker. When agitated, another student in Western Kentucky’s program calms himself by pacing, flapping his hands, then facing a corner, bumping his head four times and muttering. One young woman, lost on her way to class and not knowing how to ask for directions, had a full-blown panic attack, shaking and sobbing violently.

Photo

Brendan Cason, right, working on engineering homework with Ian Zaleski, left, a tutor, mentor and fellow participant in Western Kentucky University’s Kelly Autism Program. CreditMark Makela for The New York Times

Autism affects the brain’s early development of social and communication skills. A diagnosis of autism spectrum disorder can encompass an array of people, from the moderately impaired and intellectually nimble like Mr. Gardner, a junior majoring in biochemistry, to adults with the cognitive ability of 4-year-olds. Until 2013, students who could meet college admission criteria would most likely have received a diagnosis of Asperger’s syndrome, which has since been absorbed into autism spectrum disorder.

The social challenges of people on the spectrum can impede their likelihood of thriving not only in college, but also after graduation. Counselors in programs like Western Kentucky’s not only coach students who struggle to read social cues, but also serve as advocates when misreadings go terribly awry, such as not recognizing the rebuff of a sexual advance.

When a professor complains about a student who interrupts lectures with a harangue, Michelle Elkins, who directs the Western Kentucky program, will retort: “I am not excusing his behavior. I am explaining his brain function.”

Breaking the Ice

At suppertime, the dining hall at Western Kentucky’s student union is crowded, clamorous and brightly lit. Students in the Kelly program, who often have sensory hypersensitivities as well as social discomfort, usually prefer eating alone in their rooms.

But one night this fall, some gathered for a weekly dinner with peer mentors — students hired by the program to be tutors and social guides. The Kelly students tentatively approached a meeting place in the lobby. As they recognized their mentors among the milling crowd, relief flooded their faces.

The meal began awkwardly. One Kelly student buried himself in a textbook. Another gazed around the dining hall, humming.

Gradually, the mentors drew them out. How was your day? Have you tried any clubs? Jacob, a freshman from Tennessee who is in a Chinese immersion curriculum and asked that his last name not be used to protect his family’s privacy, said he had joined the French, Spanish and German clubs.

Share Your Story about Being a College Student with Autism

Have you or a family member received a diagnosis of autism spectrum disorder and attended college? If so, we would like to learn more about your experiences.
http://www.nytimes.com/interactive/2016/health/autism-college.html

“When do you sleep?” I inquired with a smile.

A few mentors laughed appreciatively. Jacob looked puzzled. “I don’t get the humor in that question,” he said.

When the topic shifted to a social event coming up at the center — a video game party — conversational buy-in was guaranteed. Even so, as various games were suggested, the dinner table exchanges were more proclamation than conversation:

“In my opinion, Pokémon Go is a stupid idea,” Mr. Gardner shouted.

Ms. Elkins fixed him with a look. “Good you added, ‘in my opinion,’ Crosby,” she said.

The autism program’s home, a matter-of-fact clinical education building at the edge of the university, is a peaceful, dimly lit haven from the churning campus. The 45 undergraduates in the program spend three hours a day here, four days a week.

They study, meeting with tutors, and confer with counselors and a psychologist to review myriad mystifying daily encounters. The counselors maintain ties with dorm supervisors, professors and the career center, mediating misunderstandings.

By 2019, the program, which started with three students a little over a decade ago, anticipates being able to admit 77 students. Like most such programs on other campuses, it charges a fee; W.K.U.’s is $5,000 a semester, much of which may be covered by federal vocational rehabilitation funds.

In addition to shoring up academic and organizational skills, the program aims to ease students into the social flow of campus. This year, group discussions will tackle topics that include sex and dating.

Some of these students have enough self-awareness to feel the excruciating loneliness of exclusion. “One student told me, ‘I was so excited about college because I hear you don’t get bullied there, and I don’t know what that’s like,’” said Sarah McMaine-Render, the program’s manager.

Photo

Kaley Miller cutting metal for an owl sculpture in an art studio at Western Kentucky University.CreditMark Makela for The New York Times

Others remain relatively oblivious to the social world surging around them.

Impulse control is an issue for many of these students: They will stand up and abruptly leave class. Some need reminders about basic hygiene. Because having a roommate can be unnerving, most have single rooms in the dorms.

But they all have the requisite academic ability: Before applying to the support program, they must be admitted by the university. Some are exceptionally bright. “I have a 4.0 G.P.A. but David leaves me behind in the dust,” Liz Ramey, 19, a student mentor, said of David Merdian, a Kelly sophomore who studies mathematical economics with a concentration in actuarial science.

With the program’s help, some of the students, most of whom are male, can enter the four-year university directly from high school. Others first try community college. After Kaley Miller graduated from high school, relatives, who did not believe she could live independently, put her in a group home and then a residential home with elderly adults, where she spent her days doing factory piecework. Finally, at a psychiatrist’s suggestion, Ms. Miller’s parents decided to let her try a college that provided support for students on the spectrum.

When she moved into a W.K.U. dorm, Ms. Miller, 24, a junior and a meticulous art student, reacted in wonderment. “There were so many people my age and everyone was so normal,” she said.

Out of the Shadows

In 2012, Andy Arnold, who was given an autism spectrum diagnosis as a child, enrolled as a freshman at Western Kentucky.

“It was terrifying,” he recalled. “I was anxious and went off my meds. I’d forget to shower and brush my teeth. I would do rituals, like walking around outside the dorm. I kept grabbing at the back of my neck.

“I started skipping classes. I didn’t really know how to study, so I fell behind quickly. I ate too much. I behaved irrationally to people.”

Photo

Ryan Hodges, right, joined fellow students and participants in Western Kentucky University’s Kelly Autism Program during a Friday night video game social event back in September. CreditMark Makela for The New York Times

He dropped out.

He lived at home, taking online courses for a few years, then reapplied to W.K.U. Now 23, he is back at school — and this time, he is in the autism support program.

“I feel less panicky,” Mr. Arnold said. “I like getting to know people here at the center. We have something in common.”

It is hard to know how many students with autism attend four-year schools. A 2012 study in the journal Pediatrics found that about 50,000 teenagers with the diagnosis turn 18 each year and 34.7 percent attend college. Without support, though, few graduate.

That is in part because many students with an autism diagnosis do not step forward, fearing stigma. Some experts speculate that for every college student on the spectrum who identifies himself or herself with a diagnosis, there may be two more who are undisclosed.

But as the growth of the so-called neurodiversity movement prompts people on the spectrum to define themselves as different but not deficient, more students are emerging from the shadows. The Bridges to Adelphi program at Adelphi University in Garden City, N.Y., serves about 100 students with autism. At the University of Texas in Dallas, 450 students with the diagnosis have registered for services with the Student AccessAbility office.

Their presence on campuses is also a testament to the tenacity of familiesand disability advocates who, since the 1990s, when awareness of autism began to mushroom, have pressed for earlier diagnoses and interventions. Much of that battle unfolded in public secondary schools, leading to more services.

Over the last decade, officials at mainstream universities began realizing that growing numbers of spectrum students were being admitted — and, like Mr. Arnold, were foundering.

Photo

Jacob, left, and Cameron exiting Walmart with purchases, following a trip connected to their participation in the Kelly Autism Program. CreditMark Makela for The New York Times

It was one thing for administrators to authorize accommodations like extra time on tests for students with dyslexia or attention deficit disorder. But how should they bolster students whose behavior was the primary expression of the disability — who could not stop shouting out answers in class and feared dorm showers?

And so the new autism support programs vary in emphasis. Some are based in disability resource centers, while others are in mental health offices, focusing on social skills and anxiety reduction.

“Our mission is to help them transition into the university, be successful here, and then transition out of the university to be successful in adult life,” said Pamela Lubbers, who directs one of the country’s most structured, coordinated programs, with 17 students, at Rutgers-New Brunswick.

Ms. Lubbers meets weekly with students, working them through a standardized “to do” checklist to help them identify small-step tasks to feel less overwhelmed, review their goals (“Describe the best social interactions you had this week”), and problem-solve. (“You think you left your I.D. on the campus bus. What steps will you take to find or replace it?”)

But even with support, these students often need extra time to graduate. Indeed, many do not make it that far. Some crumble under academic and organizational stress. Others succumb to campus allures like alcohol and drugs.

And others are expelled on sexual harassment grounds. They are so eager to fit in that they may, for example, comply with the demands of a bully who says, “ ‘I’ll be your friend and go to dinner with you every night next week if you kiss that girl,’” said Jane Thierfeld Brown, who consults with families and colleges about supporting students on the spectrum.

But with support, there are also those, like Ryan Hodges, who surpass expectations.

Mr. Hodges received his diagnosis at age 4. “In high school did we know he’d go to college? No,” said his father, Jeff, a Nashville businessman. “Did we hope? Yes.”

Photo

Jacob after a shopping exercise at Walmart. CreditMark Makela for The New York Times

They set their sights on W.K.U. because of the program. Now 23, Ryan has grown immeasurably in social confidence, his father said, and is on track to graduate at the end of this semester.

Whether they are prepared for the next transition remains an open question. Most programs do not keep tabs on their students after graduation.

Despite the career coaching offered for Kelly students, some still cannot present themselves well in job interviews. Living at home again, unemployed, they may regress.

“The goal is not necessarily a college degree but becoming an independent, successful adult,” Dr. Brown said. “And a bachelor’s degree doesn’t guarantee that.”

Still, many graduates from Western Kentucky’s program are employed. Mrs. McMaine-Render, who stays in touch with some through social media, mentions one who works in film, others in technology, some in retail, and another who is applying for graduate school in physics.

What about their social lives?

Mrs. McMaine-Render paused and looked at her lap. “Sometimes I’m too scared to ask,” she said.

The Supercenter Challenge

Always with an eye toward life after college, the program encourages students to learn practical skills.

Photo

Crosby J. Gardner, on his way to the video-game social event in late September.CreditMark Makela for The New York Times

Hence Western Kentucky’s weekly trip to Walmart.

One recent Friday afternoon, Mrs. McMaine-Render drove seven students in the program’s van, which resounded with cheerful non sequiturs.

“I don’t mean to be rude but could you not talk now?” one student told another. “Your voice is very loud in my head!”

Mrs. McMaine-Render pulled into the parking lot and nudged the students out of the van. They ambled toward the store, blithely indifferent to incessantly roaming cars. Then she waved and drove off, leaving them to tackle the Walmart Supercenter on their own.

In a frenzy, the group scattered. Some boys barreled up and down aisles, flinging items at random into their clattering shopping carts. Essentials: Twix. Strawberry Twizzlers. Doughnuts. Frosted cookies. Six-packs of Coke. Slippers. Napkins. Pokémon cards. More Pokémon cards.

One boy decided he wanted to reheat chicken wings in his dorm. He needed a baking tin. But that meant locating the cookware aisle. Which meant finding an employee, then asking for directions. Scary!

Checking out was another challenge. For the students’ entire lives, their purchases had been paid for by adults. Now they were peering at register totals, fumbling for credit cards, swiping and swiping, then attempting the chip system, one way and then the other, forgetting PINs. Over all, they did just fine.

They reassembled outside, sweating and smiling, surrounded by the fruits of their considerable shopping labors.

Ms. Ramey, the student mentor, picked them up. On the drive back to school, the students toggled between yakking about their shopping victories and falling silent, drained. Ms. Ramey pulled up to their dorms, one by one.

One by one, they unloaded their bags and, without so much as a “thank you” or even “goodbye,” set off.

“Have a good weekend!” she kept prompting.

Startled, each boy looked back at the car, bewildered. Another missed social cue?

Oh, right! Jolted, some remembered to smile, and even to wave farewell.

07/27/15

MassHealth: NEW Coverage – Applied Behavior Analysis (ABA) Services for Children with Autism Spectrum Disorder (ASD)

MASSACHUSETTS ADVOCATES for CHILDREN

IMPORTANT UPDATE!
MassHealth: NEW Coverage of Applied Behavior Analysis (ABA) Services for Children with Autism Spectrum Disorder (ASD) July 27, 2015
Update from MAC’s Autism Center and Massachusetts Law Reform Institute
A new state law requires Mass Health to cover medically necessary ABA services for children with autism under age 21.
ABA services are now available to Mass Health members. The frequently ask questions explain how to get coverage now and after October (when the process will change) for members who have Mass Health either as their primary or secondary insurance.

File:  FAQ_MASSHealth_ABA_July_2015

04/2/15

FACElab at Emerson College

Autism Spectrum Disorder (ASD) is a disorder of social communication and even individuals with strong language skills and high intelligence have significant problems with non-verbal communication, which often leave them socially isolated.  Many of these problems are based on difficulties reading non-verbal cues of others, or producing facial and vocal expressions that are interpreted as awkward by their peers. At the FACElab, we hope to learn more about how children with ASD perceive and produce non-verbal expressions and how their expressions are perceived by others.

Questions? Thoughts?  Would you like to help us by participating or volunteering in the lab?  Contact us.  We would love to hear from you!
http://facelab.emerson.edu/

facelab_2

Email: facelab@emerson.edu
Phone: (617) 824-8710
Physical Location: 8 Park Plaza Boston, MA 02116

Mailing Address:
Ruth B. Grossman
Emerson College
120 Boylston Street
Boston, MA 02116

Flyer

face_lab_2015

 

http://facelab.emerson.edu/

02/3/15

Autism, All Grown Up – NPR The Takeaway & Scientific American

The Takeaway

Autism, All Grown Up
Tuesday, February 03, 2015

autism_takeawy

Listen to the story (Time-8:24)

Download the MP3 –  The Takeaway: Autism Grows Up

There are several programs designed for young autistic people that are designed to support them while their growing up. But what happens after? What happens when someone on the spectrum leaves home to go to college or get a job?

Those some of the difficult questions Ondine Grosser and her family had to answer when she graduated high school.

Ondine is autistic and she was able to access services that helped her succeed in high school, where she got consistently high grades. But when she graduated and those services disappeared, navigating life became a lot more complicated. After just one semester of college, Ondine flunked out and withdrew.

Jennifer Richler is a science writer and clinical psychologist. She recently wrote about Ondine’s story and some of the new services emerging for young adults with autism.

Ondine and her mother, Amira Acre, also join The Takeaway. They discuss Ondine’s current success after enrolling with a rare program called, ASPIRE, where Ondine receives tailored support that helps high-functioning adults with autism better navigate the job market and the world around them.

Aspire – http://www.massgeneral.org/children/aspire/default.aspx

http://www.thetakeaway.org/story/finding-services-adults-autism/


Scientific American

Autism Grows Up
New programs are helping ease the transition to adulthood for people on the spectrum
Dec 18, 2014 |By Jennifer Richler

In Brief
Easing into Adulthood

  • Many people with autism struggle with the transition from high school to independent adulthood. Public support systems are often not available for those without intellectual disabilities.
  • Private programs such as Boston-based Aspire are filling the gap, supporting adults with autism as they enter college or the workforce.
  • These programs allow adults on the spectrum to socialize with peers while they practice social skills, learn to be more self-aware and develop techniques for managing stress.

More In This Article

Ondine has autism. Even though she had always struggled with making friends, she did well in high school, earning good grades. Her school district offered support services for students with developmental disorders, and with that assistance she successfully enrolled in a local college. Yet when those supports disappeared after graduation, “she basically fell apart,” says her mother, Amira. A month into her freshman year of college, Ondine stopped going to classes and completing assignments; eventually she stopped leaving her dorm room altogether. Forced to drop out and move back home, Amira says that her daughter “didn’t leave her room for 23 hours a day.”Ondine’s story is not unusual. Many parents liken the experience of their child with autism leaving high school to “falling off a cliff.” In many states, young adults with special needs are entitled to school-related support services until age 21 or 22, but after that it is up to them and their parents to find and qualify for services to help them navigate adult life. Until recently, those services barely existed for a growing segment of the population: high-functioning adults with autism. Studies show this group is underemployed compared with people with more severe cognitive disabilities, and surveys find they are often unhappy and lonely. Their unique combination of normal or high intelligence and deficits in social understanding puts these young adults in a frustrating position: many have the same goals as their typically developing peers but struggle to achieve them.

Clinicians, researchers and educators have recognized the problem, and in the past few years programs have sprung up around the country to serve this neglected group. Ondine is currently enrolled in an internship program at one of the most well-established of these programs—Aspire, based at Massachusetts General Hospital (MGH)—and she now works part-time and enjoys socializing with her co-workers. “For her to be getting out, talking to people, taking public transit … is such a huge transition,” Amira says. As the prevalence of autism continues to rise and more and more people with the diagnosis enter adulthood, Aspire and other programs like it hope to ease that transition, bridging the gap as autism grows up.

Smart and Struggling
The autism spectrum covers a wide range of symptoms, but everyone with the diagnosis has one thing in common: difficulty with social interaction. For the young adults served by programs such as Aspire, this deficit manifests in a variety of ways. They may have trouble identifying other people’s emotions, discerning appropriate conversation topics and public behavior, and recognizing or understanding their own feelings and needs.

These impediments often make it tough for adults on the spectrum to get jobs and keep them. A study published in 2012 found that only 55 percent of adults with autism had held any kind of paid employment in the six years since graduating from high school. Adults with other kinds of difficulties, including speech or language disorders, learning disabilities and even intellectual disability, had much higher rates of employment, suggesting that the low rates among adults with autism cannot be explained solely by the fact that they have a disabling disorder. The researchers concluded that young adults with autism are “uniquely at high risk for a period of struggling to find ways to participate in work and school after leaving high school.”

According to Paul Shattuck, now a psychology professor at Drexel University and lead author on the study, this situation exists partly because support services were set up around the needs of people with intellectual deficits and have not evolved much over time. “If you have an IQ [in the average range] and you’re quirky and have difficulty with social interactions, it’s very hard to get help,” he says. This description fits many of the adults whom Aspire serves. Although the label “Asperger’s syndrome” is no longer included in the DSM-5, psychiatry’s manual of mental disorders, many of Aspire’s clients have this label or identify as such; others say that they have “high-functioning autism” or “PDD,” which refers to pervasive developmental disorder, another term that is no longer in the DSM but connotes a relatively high level of ability.

Even when these adults can find work, it is often on a volunteer or part-time basis. A different study found that only 27 of the 48 young adults in their sample had ever been employed in the years since high school, and of those only one was able to support himself.

Enter Aspire and other programs like it. Aspire launched about 12 years ago, when it split off from YouthCare, a larger program that serves children with a range of mental health issues. Aspire’s executive director Scott McLeod, a clinical psychologist, explains that rates of autism diagnosis had soared, and YouthCare was inundated with children on the spectrum. The directors decided that they needed a program focused exclusively on autism.

Ultimately, says program director Dot Lucci, a school psychologist, the goal is to address what Aspire staff call the three Ss: self-awareness, social competency and stress management. Many of the people in Aspire’s programs are very bright, she says, “but if you’re not self-aware and socially competent and if you’re unable to handle your stress, all your smarts in the world are not going to help you. You’re not going to be able to get a job, keep a job or be in a relationship.”

People Who Need People
A fair-skinned, dark-haired 19-year-old named Matt stands in the center of a circle, surrounded by his peers, who are seated in folding chairs. “I need to make some money quick. What should I do?” he asks.

“Steal all the gold from Fort Knox … or rob a bank in Paris!” Dan exclaims.

“Work 24-hour shifts for the rest of your life,” Nick suggests.

“Sell your arms and legs,” Jae offers. He gets big laughs.

These young adults with autism are playing an improvisation game called Bad Advice. The person at the center of the circle presents a problem to be solved, and everyone else tries to come up with the worst possible suggestion. Aside from being a fun icebreaker, the game orients the group to the concept of social “dos and don’ts”; thinking about how not to behave in social situations implicitly reminds everyone how they should behave.

So begins another session of Aspire’s Saturday Excursions group. For most clients, the gatherings provide a sorely needed social outlet. Although people with autism are often thought of as aloof and uninterested in socializing, for many the opposite is true. A University of Missouri study of adults with autism published last April revealed that many suffer from loneliness and isolation, which often lead to depression and anxiety. The loneliness may be acute: a national study of teens with autism published in 2011 found that more than half had not gotten together with a friend in the previous year. And when another set of researchers asked parents of adults with autism about their children’s unmet needs, they cited social interaction as a major area. Adults on the spectrum crave social interaction but do not know how to get it.

The excursions group gives these young adults the chance not only to enjoy one another’s company but to practice skills they find difficult, including what people in the field call “activities of daily living”—tasks such as organizing an outing and managing time and money. After the improv game and before the group heads out into the windy early spring afternoon, Aspire staff members remind everyone that this week they will be seeing a movie downtown. They review the schedule for the day, check the subway route to the movie theater, and distribute wallets with preloaded debit cards and subway cards. On the way to and from the theater, there is plenty of time to practice another essential skill: conversation. Dan, a young man with closely cropped hair and sunglasses, asks for everyone’s birthday so he can read out their horoscopes from an app on his smartphone.

Today’s outing goes smoothly, and afterward everyone gathers to discuss the “highs and lows” of the trip. (The consensus: seeing The Lego Movie was a high; walking against the wind was a low.) But there are occasional mishaps. On a trip to the Navy Yard with a different group, one of the members, tired from walking around, lay down to rest on a bed onboard a ship. These sticky situations are opportunities to discuss appropriate social behavior—for example, sometimes it is necessary to act differently in public than in private.

Aspire conducts most of its interventions in a group setting, rather than working individually with clients. “Working one-to-one with thoughtful, caring adults—those aren’t challenging situations,” McLeod observes. “We think that the group is a far more powerful place to learn skills.” At the same time, the groups feel safer and more predictable than other social situations, he adds, so clients become less anxious, allowing them to practice skills they otherwise would not. “The reason a social skill may not be exhibited is usually far more complicated than the fact that they just don’t have the skill,” he says. Often other issues—anxiety, difficulty taking others’ perspectives or simply not understanding the purpose of a certain social behavior—get in the way. That is why Aspire avoids simply drilling skills into its clients, an approach that, according to McLeod, “has failed pretty miserably.”

Studies on how to best help adults with autism learn and practice social skills are few and far between, so Aspire’s programs draw from a number of evidence-based approaches in psychology. Advisers emphasize clients’ strengths while giving positive and negative feedback, a technique based on principles from the field of positive psychology. They encourage clients to think about the thoughts and feelings underlying others’ behavior as well as their own, a central tenet of cognitive-behavior therapy. “The premise is, you can learn social skills like turn taking, but if you have no idea why you’re doing them, it’s a veneer. If you get in an unfamiliar situation, it falls apart,” Lucci explains. “It’s about why we do what we do.”

On the Job
Alex sits at a conference table next to his supervisor, Kevin Heffernan. He is nearing the end of his 14-week internship in the Corporate Real Estate division of Liberty Mutual, a position he got through Aspire’s internship program, which places young adults with autism at sites around Boston and provides them with mentorship and support. Alex is thrilled with his experience. “It’s given me a reason to wake up,” he says. It has also taught him essential job skills, including how to make pivot tables in Excel, an accomplishment in which he takes considerable pride, judging from the shy smile that spreads across his face when he mentions it.

Heffernan says that once Alex finishes his internship, he can apply for positions at the company and has a good shot of getting one. “The sky’s the limit for this kid,” he says, beaming. It is not just Alex’s work skills that have impressed him—it is also the way he interacts with his colleagues. Before Alex started, Heffernan was warned that he was shy and anxious in social situations. “My radar was on,” Heffernan admits. But with time, Alex became comfortable with his co-workers. “He’s fitting in just fine, thank you,” Heffernan says.

The research on job-training programs for people with autism, though preliminary, suggests it should be possible to help more adults on the spectrum succeed as Alex has. For example, in a clinical trial of the Project SEARCH High School Transition Program, which serves adults with autism at dozens of sites across the U.S., participants completed a nine-month internship program embedded in a large community business, such as a hospital, rotating through different jobs and learning practical skills, such as using public transportation to get to work. They also received individualized support from autism specialists. The control group received standard services provided by the school district. The results were encouraging: of the 24 adults who had an internship, 21 acquired employment after the program, compared with only one of 16 in the control group, and the difference was sustained three months later. Perhaps even more important, those in internships gained independence over time—that is, they required fewer supports—which was not true of those in the control group.

Many other programs for adults with autism around the country also focus on employment or continuing education. For example, the College Internship Program, with sites in Indiana, California, Massachusetts and New York, is geared to college students on the autism spectrum who do not have an intellectual disability. It provides mentorship, group social activities and internship opportunities. Aspire also offers services for the college-bound, including a “boot camp” the summer before freshman year, in which students develop practical skills for life on campus. Once at college, they can enroll in Aspire’s mentoring program, in which they are paired with a typically developing student on campus, who helps them get acquainted with key services and resources and provides them with ongoing support.

For those who do have an intellectual disability, programs such as Next Steps at Vanderbilt University allow students to take classes alongside peers, learn vocational and social skills, and earn a certificate after two years. Project SEARCH also serves adults with significant intellectual or developmental disabilities. Given the enormous variability in functioning among those with autism, this specialization makes sense: it is hard to help everyone on the spectrum when there is so much heterogeneity within it. Specializing also helps programs secure funding—most are underwritten by private philanthropic donations, which allow them to offer financial aid to clients’ families. McLeod reports that nobody has ever been turned away from Aspire because of an inability to pay.

All these programs not only help adults with autism get jobs, they also support them so that they succeed at those jobs—which often requires navigating delicate situations. One of Aspire’s interns became distressed, for example, after meeting a co-worker of a different ethnicity, loudly telling her supervisor that she could not work with that person because she had once had a negative experience with someone of that ethnicity.

These situations can be uncomfortable, but McLeod sees them as opportunities for adults with autism to learn in real time and in real life, where it matters most. In fact, “bringing interventions into the life space,” as he puts it, is key to Aspire’s approach. “One of the main challenges for folks on the spectrum is the transfer and generalization of skills,” he says. A concept such as taking another’s perspective can make sense in the therapist’s office, he explains, but can be incredibly challenging to implement in daily life.

Looking Forward
Ondine sits in a small group of young men and women at a table in a meeting room, waiting for the weekly internship seminar to begin. She chats with a brunette with an easy smile named Nicole as others busily check their smartphones. A bulletin board on the wall has a sign that reads, “I Aspire To …” with construction paper stars affixed to it, on which clients have written goals that range from the fantastic to the mundane: “Be a Nascar driver”; “Show up to work 5 minutes before the scheduled time”; “Ask others about their interests.” Bretton Mulder, a clinical psychologist and director of Aspire’s teen and young adult services, starts today’s session by asking the interns how things have been going in their first couple of weeks on the job. Ondine laments that it took her two hours to get her security badge at MGH, where she is working in materials management. Others mention traffic troubles and connecting with co-workers over music. After checking in with everyone, Mulder leads the group in a discussion of how to distinguish between on- and off-topic comments when in a meeting and why it is important to avoid judging co-workers based on features such as appearance and level of education.

During the discussion, Nicole occasionally interrupts her peers but immediately catches herself. She clamps one hand over her mouth and gently waves the other in the speaker’s direction, as if to say, “Oops … go on.” The self-awareness Nicole is demonstrating is often challenging for those with autism, McLeod says. “What goes along with the perspective-taking deficit of autism is that sometimes it’s hard to know who you are,” he explains. To help uncover their identities, adults at Aspire and in other programs are encouraged to reflect on their strengths, weaknesses, thoughts and feelings. This process often leads them to important realizations: “I’m a bright person who’s overreactive to certain sensory stimulation,” McLeod gives as an example. Aspire’s clients are encouraged to share these relevant aspects of their personalities with people they meet or work with; doing so usually allows them to be accepted and understood more quickly.

If self-awareness is the mental foundation and applied social skills are the practical component, the often overlooked but crucial third factor in helping adults on the spectrum succeed is stress management. Many programs, including Aspire, help their clients learn techniques such as mindfulness and yoga. So far the preliminary data indicate that with these three pillars of support, many adults with autism can join the workforce and eventually leave behind the programs that helped them get there. Autism’s prevalence continues to increase, however; according to 2010 estimates from the Centers for Disease Control and Prevention, one in 68 children has autism, up 30 percent from figures reported in 2008. Recent research suggests that a major reason for this surge is more frequent diagnosis of precisely the people Aspire serves—those who are more cognitively able.

Although Aspire does not yet have outcome measures, survey data suggest clients and their families are highly satisfied. For some, such as Ondine, the programs have been a kind of life raft. Her internship at MGH might not be her dream job —“anyone can do it,” she tells her peers matter-of-factly during the internship seminar—but she sees it as a major step toward her long-term goal of being a paramedic. Perhaps more important, Amira says the program staff make her daughter feel “respected and admired for who she is. These people see all the possibilities and potential she has.”

As a result, Ondine’s outlook has changed dramatically. “It used to be that she said she has no future,” her mother says. “Now she’s talking about a future.”

01/30/15

Making a place for disabled young adults to live, learn – Boston Globe – 3LPlace

Boghosian_autismhouse13_LIFE  3lpLogo_new_Break

By Bella English

Deborah Flaschen, a former Wall Street investment banker, was 16 when she enrolled at Tufts University and 20 when she graduated magna cum laude. When her son D.J., who has autism, turned 17, she started looking around at his options, but they were alarmingly limited. “There was nothing in Boston, not a place that I would choose to put him in,” says Flaschen.

The dilemma is one echoed by families of students with autism who, along with other young people with developmental delays, age out of services provided by school districts when they turn 22. Many are ill-prepared to live independently or hold a job. It is a problem that is expected to mushroom along with the growing number of children diagnosed with the disorder.

Lacking an option she felt comfortable with, Flaschen decided to create her own. The result: 3LPlace Life College near Tufts in Somerville for young adults with autism and other developmental disabilities, including Down syndrome and cerebral palsy. Experts in the field say that the Life College is the only one of its kind in Massachusetts, combining a residential and day program under one roof for young adults. With its ability to offer more comprehensive life-skills training, the new project underscores both how significant the need is for the students and how little is generally available.

“Once they turn 22, there’s no obligation unless the state decides they are eligible for adult services and that could be anything from full residential to not much at all,” says Tamar Lewis of Belmont, whose 22-year-old son recently moved into 3LPlace. “This place is a lifesaver. Most are either day or residential, not both, and you have to search for each.”

Nationwide, only 14 percent of adults with such disabilities have jobs outside a care facility. In Massachusetts, developmentally disabled adults are less than half as likely as their peers to be employed at all — and those who are generally work at minimum wage jobs with no benefits.

The demand for programs such as 3LPlace is likely to increase. Autism is the fastest-growing developmental disability in the nation. According to the Centers for Disease Control and Prevention, it affects 1 in 68 people — a 30 percent increase from two years ago. It is characterized by difficulties in social interaction, communication, and repetitive behavior. Some people have intellectual challenges, attention and motor coordination problems, as well as physical and emotional issues.

According to a 2012 study by the American Academy of Pediatrics, more than half of those on the spectrum did not work or attend school in the two years after high school, 79 percent lived with their parents, 60 percent received some therapy and counseling, but nearly 40 percent got no services at all.

Boghosian_autismhouse5_LIFE

DJ Flaschen (cq) 24 (left), looks in a mirror with his art therapist Meghan Montgomery (cq) at 3LPlace Life College Residence in Somerville. (Aram Boghosian for The Boston Globe)

‘I always wanted a whole life for my son. I don’t see that he and my daughter need different opportunities.’

Quote Icon
“Parents describe it as a black hole, this crater that opens up in front of us and we fall into it,” says June Peoples Mallon, communications and development director at 3LPlace Inc., who has a 15-year-old daughter on the autism spectrum. “The sad fact is that the outcome without some sort of intervention is pretty unrelentingly grim for these young adults and their aging parents, and statistics reflect that.”

Boghosian_autismhouse2_LIFE

Shaving and hand washing instructions in the bathroom at 3LPlace Life College Residence in Somerville. (Aram Boghosian for The Boston Globe)

The few options, she says, include a Medicaid-funded program called “day habitation,” which provides care and some training in group settings, and some state programs that provide vocational help for higher-functioning students, mostly for low-paying, part-time jobs. Some people, she says, “just hang out at home with their parents.”

In Massachusetts, funding from the Department of Developmental Services goes first to the most severely disabled. Preference often goes to families who sent their children to residential schools, so that when they turn 22, they are more likely to get residential funding as an adult “edging out families who have made big sacrifices for years to care for their developmentally disabled children at home, and who are likely to find themselves continuing in the role of caregiver of their adult child,” says Mallon.

Planning for 3LPlace started in 2008, when Flaschen and her husband, David, looked for a placement for D.J., who was diagnosed with autism 20 years ago when he was 4. The couple met while working on their MBAs at the Wharton School at the University of Pennsylvania. They also have a 26-year-old daughter, who works for TripAdvisor in Cambridge.

“I always wanted a whole life for my son,” says Flaschen, 59, who lives in Brookline. “I don’t see that he and my daughter need different opportunities.”

But when she began looking, she found nothing that helped the transition to adulthood and from home to the community. So, with three other mothers who also had kids on the spectrum, she began to plan and raise money from foundations, corporate donors, and private individuals.

Boghosian_autismhouse23_LIFE

3LPlace Life College Residence in Somerville. (Aram Boghosian for The Boston Globe)

Working with experts at Tufts, Lesley, Harvard, and Boston universities, they created a transition curriculum, and the Life College was approved by the state Department of Developmental Services.

Karen Levine is a psychologist and member of the state’s Autism Commission that issued a report in 2013 calling for more services for the estimated 75,000 people in Massachusetts with autism. She says that 3LPlace is the only one of its kind in the commonwealth.

“It is much more individualized and really values the whole person, their unique interests and talents, prioritizing their social and emotional well-being, and it incorporates the arts,” says Levine, an instructor at Harvard Medical School.

Why the name 3LPlace? The program includes 3 L’s: Learning, which is the curriculum; Living, which is the Life College; and Linking, which is the group’s commitment to sharing what they’ve done with other cities across the country.

“We want to write the playbook on how to open something like this,” says Flaschen.

3LPlace opened in November and so far has two residents, including D.J., and others are being evaluated for placement. Members ages 22 to 32 can stay two to three years before transitioning to independent or at least semi-independent living.

The house can hold 10 young men and women, each with their own room. Two more rooms are set aside for overnight supervisors.

Boghosian_autismhouse1_LIFE

L-R Deborah Flaschen (cq) her autistic son DJ Flaschen (cq) 24, and his art therapist Meghan Montgomery (cq) talk together in his room at 3LPlace Life College Residence in Somerville. (Aram Boghosian for The Boston Globe)

In 2009, the Flaschens bought the two-family house near Davis Square and gutted it. They chose the location for its access to public transportation, stores, and jobs. The result is a cheery but uncluttered place that offers a 3-to-1 student-staff ratio with a clinical director, social worker, various therapists, and teachers.

D.J.’s sunny room has a bunk bed and near the bathroom sink is a poster of a man with shaving cream on his face and the question: “D.J., is it time to shave?” There are step-by-step illustrated instructions for washing one’s hands, brushing and flossing teeth, and what to do after showering (“comb hair, put deodorant on”).

A daily schedule is posted for each resident, and they include various therapies, chores, and classes. D.J., for instance, is artistic and works closely with Meghan Montgomery, an expressive arts therapist.

The other tenant is Tamar Lewis’s son, who is also on the autism spectrum (she doesn’t want his name used). He was living at the Cardinal Cushing Center in Hanover but recently aged out. He is passionate about music, and 3LPlace is catering to that. The staff contacted the Somerville music club Johnny D’s, where her son will soon start to volunteer.

Boghosian_autismhouse20_LIFE

Labeled kitchen drawers at 3LPlace Life College Residence in Somerville. (Aram Boghosian for The Boston Globe)

None of this comes cheap. Residential programs range from about $80,000 to $225,000, Mallon says. Tuition at 3LPlace is $132,500 a year. Those at 3LPlace will receive a mix of funding from private and public sources, depending on their eligibility. Flaschen is working on raising money for scholarships. For Lewis’s son, labeled a top priority by DDS because he has long been a residential client who cannot live at home, the state is paying most of his cost.

What will be next for D.J., when he’s finished at Life College? His mother sees him in an apartment in the neighborhood with three bedrooms: one for him, one for a friend, and one for a supervisor, in a kind of family setting instead of an institution. Maybe, she muses, he’ll work in an art studio.

But more important, Flaschen stresses, is what D.J. himself envisions, with Life College helping him figure out how to get there. “Rather than look at our young adults as people limited by their challenges, we look at them as people with untapped potential, and ask what we can do to support them,” she says.

Bella English can be reached at english@globe.com

All photos – ARAM BOGHOSIAN FOR THE BOSTON GLOBE

3lpLogo_new_Break

3lPlace
http://3lplace.org/index.html
Email: info@3LPlace.org
Phone: 617-764-3280

U.S. Mail:
50 Whitman Street
Somerville, MA 02144-1975

======

Globe Letter to the Editor – Feb. 9, 2015

Disabled need support as they work to find, and keep, a job

I AM writing in response to the article “A next step” (SaturdayLife, Jan. 31), about the challenges faced by young adults aging out of school-provided services. As an employment attorney and director of a legal aid clinic for Massachusetts workers, I often hear from people with developmental disabilities or their families about their difficulties finding and keeping a job.

Legal requirements for employers differ markedly from those of schools. So, unsurprisingly, young adults with disabilities who are moving into the labor force do not understand which legal protections they have and do not have at work. The result of these misunderstandings is often job loss.

There is often confusion, for example, about if, how, or when to ask for an accommodation. And such a dialogue with an employer requires a type of self-advocacy that can be especially daunting for many with developmental disabilities.

Sometimes it takes only a little bit of guidance and accurate information to keep someone employed; other situations are more complicated. Either way, I foresee a growing need to provide such assistance to children diagnosed with disabilities as they transition to independent living.

Lisa J. Bernt
Director
Fair Employment Project
Jamaica Plain
http://www.fairemploymentproject.org/

04/14/14

Massport: Helping autistic kids earn their wings – Boston Globe – Opt. Ed – 4/14/14

Children with autism are frequently overwhelmed by new surroundings — loud noises, large crowds, and being touched by strangers can all cause panic. This can make traveling through airports a huge challenge.

Massport is trying to help. The agency this month ran its seventh “Wings for Autism” (See Below) event at Logan Airport, bringing together volunteers from three airlines, the Transportation Security Administration, and other vendors to offer about 160 kids with autism and their families the chance at a trial run going through airport security and boarding a flight. The daylong seminar is free and runs twice a year, in November and April. At other times, families with upcoming trips can schedule practice runs with Logan customer service staff or through the agency’s partner, the advocacy group Charles River Center http://charlesrivercenter.org/.

The Massport program has quickly become a national model: Six other airports have already  followed suit, and as many as 13 others are considering similar efforts. Massport launched the initiative after hearing of the experience of Susie Littlejohn and her son, Henry, who is autistic. In 2010, the Littlejohns were forced to call off a trip to Disney World after a glass elevator at Logan caused Henry to melt down. At this spring’s event, Henry, now 9, walked right on the plane and sat down. Says Susie Littlejohn, “The chance to practice has made all the difference.”

 

Wings for Autism

 The Wings for Autism program is designed specifically for families with autistic children to help ease the stress of flying.

To launch this unique program Massport teamed up with the Transportation Security Administration (TSA), JetBlue and the Charles River Center (an autism support center).
A Different Kind of Dress Rehearsal With this unique concept in mind, Massport hosted a “dress rehearsal” open house day to give these families the opportunity to experience travel through Boston Logan before their actual trip.

Since 2011, Boston Logan held four Wings for Autism events and more than 1000 people attended. Families were able to familiarize themselves with the airport and travel procedures and kids had a chance to practice entering the airport, getting boarding passes at the ticket counter, checking bags, being screened at the TSA security checkpoint, and boarding the aircraft.

Increasing Awareness Not only is this a benefit to the families who participate, but it also provides a valuable training opportunity for airport, airline and TSA personnel to learn how to accommodate children with special needs and increase awareness within the airport community so that children with autism – and their families – can have a positive travel experience.
For additional information please e-mail wingsforautism@massport.com.
How To Get Involved If your family is interested in participating in the next Wings for Autism event at Boston Logan, please contact the Charles River Center.*
*Note: You do not have to be affiliated with the Charles River Center to participate and there is no cost for this program.

03/29/14

Autism Numbers Increasing & MA Autism Insurance Changes

Globe article and link after insurance info.

Autism Insurance For Your Child
You must apply by March 31, 2014 now,
More options to be announced for fall enrollments

By signing up, your child would be enrolled in a private insurance plan that is
required to provide these services for people with autism. You would have to pay a
monthly premium, but MassHealth would reimburse you for all or part of the
premium each month, depending on the plan you choose. Your child would not lose
his or her MassHealth or CommonHealth coverage.

The online application process is detailed and can be complicated. The Connector
has people available to help you apply. They are known as “Navigators” or Certified
Application Counselors (CACs). There is no charge for their assistance. To get
help, call one of the following numbers:
The Massachusetts Connector: (877) MA-ENROLL
The Boston Public Health Commission:
Beth Baker at (617)534-2294; bbaker@bphc.org

The Autism Insurance Resource Center: See phone number below. If you are
receiving this by email, click on this link to read further about this opportunity for
your child.
http://www.disabilityinfo.org/ARICA/pdfs/February-2014-Outreach.pdf

For more information, assistance or general information about the Autism Insurance Law
Contact the Autism Insurance Resource Center by:
Phone(774) 455-4056 or (800) 642-0249
Emailinfo@disabilityinfo.org
Websitewww.disabilityinfo.org/arica

====================
Number of children diagnosed with autism soars
CDC data show 30 percent jump over two years
By Deborah Kotz  | BOSTON GLOBE STAFF   MARCH 28, 2014

Autism rates in children have continued their steady rise, surging 30 percent in two years, according to the latest data released Thursday by the Centers for Disease Control and Prevention. While 1 in 88 children were estimated to have autism in 2008, public health officials now estimate that 1 in 68 children are on the autism spectrum.

Those statistics are based on the 2010 medical records of 8-year-olds living in 11 communities throughout the United States that are part of the CDC’s autism surveillance network. When the CDC started its surveillance of these communities back in 2000, the incidence of autism was 1 in 150 children.

CDC officials couldn’t offer specific reasons for the rise beyond increased awareness of the condition among doctors, teachers, and parents. “It may be that we’re getting better at identifying autism,” said Coleen Boyle, director of the CDC’s National Center on Birth Defects and Developmental Disabilities, during a press briefing. “We do feel like some of this has to do with how children are identified, diagnosed, and served in their communities.”

Autism advocacy groups noted that the increasing prevalence underscores the need for research funding to identify the causes of autism. “To be perfectly frank, it’s an incomplete picture right now,” said Robert Ring, chief science officer at Autism Speaks, a research advocacy organization in New York City. “All the pieces of the puzzle aren’t in place.”

Certain trends have remained constant during the decade that the CDC has been collecting data. Autism remains five times more common in boys — affecting 1 in 42 compared with 1 in 189 girls — and white children are more likely to be diagnosed than black or Hispanic children, though the prevalence in those minority groups has risen at a faster rate than for whites.

About half of children with autism in 2010 had average or above-average intelligence, compared with a third in 2002.

“We now recognize that autism is a spectrum,” said Marshalyn Yeargin-Allsopp, chief of the CDC’s developmental disabilities branch. “Our understanding has evolved to the point that we understand that there are children with higher IQs who may not have been receiving services in the past.”

The CDC provided grants to 11 states across the country — including Arizona, Arkansas, Maryland, and Wisconsin — based on their ability to survey medical and school records for pediatric autism diagnoses. Massachusetts is not one of the sites providing data to the federal government.

Autism rates varied widely among the 11 areas under CDC surveillance. In Alabama, only 1 in 175 children had autism in 2010 compared with 1 in 45 children in New Jersey.

That difference could reflect varying access to expensive autism assessments and therapies among states. New Jersey mandated in 2010 that insurance companies must cover $36,000 per year in behavioral programs and other autism therapies for any person under age 21 who is diagnosed with the disorder. Alabama didn’t pass a coverage mandate until 2012. A Massachusetts coverage law took effect in 2011, and more than 30 other states instituted such laws as well.

Some children with behavioral or intellectual disabilities other than autism may receive the diagnosis from their doctors in order to qualify them for coverage for treatments that could benefit them too, said Dr. Sarah Spence, codirector of Boston Children Hospital’s Autism Spectrum Center. “Kids may get labeled with autism disorder because that’s the best way for them to get services, but I don’t think this overdiagnosis is a huge piece of the rising incidence.”

More likely, doctors have become more attuned to early signs of autism in toddlers and preschoolers, such as failure to make eye contact, smile, or express emotional attachments to their caregivers. The American Academy of Pediatrics recommends that health care providers conduct autism screening tests at every well-child visit.

“Doctors are getting better at doing these screenings,” Spence said, “to the point where every once in a while, I can happily tell parents that their child’s language delay isn’t autism.”

Despite this increased awareness, the average age at which a child is diagnosed hasn’t budged much; most children aren’t diagnosed until after 4 years of age, according to the CDC, two years after signs of the disorder usually start to appear.

“Research suggests that the earlier we intervene with treatment, the greater the probability that children will realize their full potential,” Ring said.

In an effort to get children diagnosed earlier, the US Department of Health and Human Services revealed an educational campaign on Thursday to make parents, teachers, and health care providers even more aware of early autism signs. Parents are advised to look for certain expected milestones in their child’s development, such as developing a fear of strangers, responding to other people’s emotions, and looking in the mirror by age 6 to 9 months.

One problem, however, that still remains unaddressed is the lack of behavioral specialists to assess and treat the growing population of children displaying signs of autism.

“The wait lists in Boston for assessment and treatment are too long,” Spence said, “and that’s unacceptable because every month counts when it comes to starting therapy.”
==================
http://www.cdc.gov/ncbddd/autism/data.html

image

02/9/14

Easter Seals Workshops Winter/Spring 2014

Register today and join AT professionals as they teach participants the benefits and uses of the latest assistive technology tools.

Registration Information for Easter Seals AT Workshops

Easter Seals Workshops Winter / Spring 2014

Asperger’s Independence Apps
February 19, 2014 5:30-7:30pm
Easter Seals Boston Office
Fee: $80

This presentation will focus on an array of Apps that are available to assist individuals with Asperger’s to better function in their work and social lives. Subjects include organization and time management (transitions), communication and social supports. It is designed for parents, educators, and employers, and for individuals with Asperger’s themselves. Learning objectives

·         Identify 2 categories of potentially useful Apps for individuals with Asperger’s.
·         List at least 2 Apps from each category List 3 features of the Sōsh App.

Presenter: Katrina Caracol-Parker, BS.
Getting off the Ground with Proloquo2Go
Tuesday February 25, 2014  9:30am to 12:30pm
Easter Seals Boston Office
Fee: $80

This three hour hands-on workshop is designed to help you get up and running with Proloquo2Go, the popular augmentative communication app. We will cover basic skills such as choosing vocabulary options, adapting settings, creation and customization of pages, linking pages and backing up and restoring your customized vocabulary. An overview of the scanning features will be included. We will also discuss strategies for success to help your user get the most out of their AAC system.

Some basic knowledge of the iPad is helpful. Please be sure your device has the most recent operating system, and that you have the most recent version of Proloquo2Go. Learning objectives

  •          Participants will understand and use at least three different editing features of Proloquo2Go
  •          Participants will list three different ways to personalize communication displays with
    Proloquo2Go
  •          Participants will list three different methods for backing up and sharing Proloquo2Go files

Presenter: Kristi Peak-Oliveira, MS, CCC, Speech Language Pathologist/AAC Specialist.
Accessibility and Apple i-Devices
March 11, 2014  5:30- 8:30 PM
Easter Seals Boston Office
Fee: $80

This hands-on workshop will focus on meeting the needs of diverse users by accessing the built-in accessibility options in iOS devices such as the iPad, iPad mini, iPod Touch, and iPhone.  Features will include text to speech reading of on-screen content, strategies for using voice-activated features, customizing the user experience with planning placement of resources, and utilizing the new switch access features of iOS 7.  This workshop will also consider use of additional tools and strategies, such as cases, mounting, and styluses, to improve accessibility for users.  This workshop will not be able to cover specific app recommendations, but resources for app review organizations will be shared.  Bring your own i-device for a hands-on experience.

Learning objectives

  • identify accessibility limitations of the default configuration for  iOS devices for individuals with diverse abilities
  • describe features and potential applications of built in accessibility options for iOS devices such as voiceover, speak selection, voice command, guided access, assistive touch, and switch access
  • understand potential tools and strategies that can be utilized to enhance access for users with diverse abilities

Presenter: Kevin Berner, MS OTR/L, ATP
AAC Language & Conversations: Make It Fun And Interactive!                                                                                                                                                                                                                                                                 April April 26, 2014    9:00am – 3:00pm
Merrimack College
Fee:  early bird (before February 21) $165 or $189 after February 21

How often do you observe AAC users who perform beautifully in therapy, only to sit passively in classrooms and social situations?  This quick-paced, interactive session will support students in using core vocabulary for authentic purposes, with peers, and using repetition with variation.  Strategies include:  RPM-GO (rehearse, practice, model – GO), combining core vocabulary and literacy, and scaffolding communication with engaging apps. Social Scripts ensure that augmented communicators – even those with limited access skills – can achieve interactions that are frequent, motivating, self-initiated, varied, ongoing, with multiple turns, and with a range of partners, including peers. Strategies will be provided for creating, programming, and teaching the use of social scripts to support accessing skills as well as conversation.  Participants will engage in multiple ‘try-it’ activities to help learning generalize, just as we hope to make core vocabulary generalize for people who use AAC!  Participants will receive a CD with sample activities and forms.

Learning Outcomes:

1)      Summarize the RPM-GO approach (Rehearse, Practice, Model – GO)

2)     Review the components of a social script and work as a team to create a social script for a student who is a beginning communicator

3)     Describe apps and ways to use apps interactively to support target strategies (combining language and literacy, interactive communication games)

Presented by Dr. Caroline Musselwhite
ASHA CEUs are available at no additional charge for the April 26 workshop only

08/30/13

Boston Community Days Oct 5, Oct 19, & Nov 2 2013

flutie_found

Save the Date         

SATURDAY, OCTOBER 5, 2013
Engine 3
618 HARRISON AVE
10:00AM-12:00PM

Please RSVP by 9/27 to Betsy at 781-762-4001 Ext. 304
eroche@arcsouthnorfolk.org

We are pleased to announce a Community Day in BACK BAY/SOUTH BOSTON at the Fire House located at 618 Harrison Ave on Saturday, October 5, 2013 from 10:00AM-12:00PM.

SATURDAY, OCTOBER 19, 2013
Engine 5
360 SARATOGA ST.
10:00AM-12:00PM

Please RSVP by 10/11 to Betsy at 781-762-4001 Ext. 304
eroche@arcsouthnorfolk.org

We are pleased to announce a Community Day in EAST BOSTON at the Fire House located at 360 Saratoga St. on Saturday, October 19, 2013 from 10:00AM-12:00PM.

SATURDAY, NOV. 2, 2013
Engine 2
700 EAST FOURTH ST.
10:00AM-12:00PM

Please RSVP by 10/25 to Betsy at 781-762-4001 Ext. 304
eroche@arcsouthnorfolk.org

We are pleased to announce a Community Day in SOUTH BOSTON at the Fire House located at 700 East Fourth St. on Saturday, November 2, 2013 from 10:00AM-12:00PM.

 This Community Day is an Open House for individuals diagnosed with Autism Spectrum Disorders and other related developmental disabilities and their families/caregivers.

Please join us as your local First Responders will be on hand to answer questions on how to best prepare for emergency situations involving your loved one diagnosed with Autism Spectrum Disorders and other related developmental disabilities.

This event is being sponsored by
The Doug Flutie, Jr. Foundation for Autism, Inc.

This event is a collaborative effort between:
the ALEC Program of The Arc of South Norfolk
Boston City Council
Boston Police Department
Boston Fire Department,
Boston EMS
Till, Inc.

 BOSTON_Fire_Ems_Police_City

07/23/13

Firm raises $15.4m for autism test – Boston Globe 7/23/2013

SynapDx Corp., a Lexington company that is developing a diagnostic test to detect autism spectrum disorder earlier than tests now currently used, said Monday that it has secured a $15.4 million funding round, led by Google Ventures.

Foundation Medical Partners joined the financing as a new investor, alongside founding investors North Bridge Venture Partners and General Catalyst Partners, SynapDx said in a news release.

According to the release, SynapDx is currently developing a breakthrough blood-based autism spectrum disorder diagnostic test, designed to help clinicians identify children with autism earlier than they do today.

SynapDx added that Google’s Andrew Conrad has been appointed to its board of directors.

In a statement, Conrad said:

“The best diagnostic tests of our era will be developed at the nexus of advanced genomics and cutting edge informatics. SynapDx stands to revolutionize the autism field while building the pediatric genomics company.”

Chris Reidy can be reached at reidy@globe.com.

06/10/13

Helping those with autism find technology jobs, One father’s #BigIdea

Great Piece from NBC Nightly News from June 10, 2013

At the nonPareil Institute, an autism diagnosis isn’t an impediment to developing a meaningful career. The nonprofit provides technical training, teaching software skills to students with autism and then hiring those students to design games, apps and eBooks. NBC’s Stephanie Gosk reports.

Dan Selec, whose son was diagnosed with autism, had a big idea: to train and then hire autistic students to work with technology. In 2008 he founded his nonprofit, the nonPareil Institute, which teaches software skills to those with autism and then hires many of them. Now, these workers are increasingly finding themselves in demand for the skills they’ve learned.

Click here to learn more about Selec’s nonprofit.

Visit NBCNews.com for breaking news, world news, and news about the economy