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11/23/16

Along the Autism Spectrum, a Path Through Campus Life

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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.

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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.

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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.”

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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.

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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.”

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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.

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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.

03/15/16

Boston City Councils Committee On Education – Thursday, March 17, 2016 6pm

Councilor Pressley has requested a hearing to review and discuss the FY17 BPS Special Education Budget and to identify solutions to ensure equitable transition services for BPS youth.

Hearing Notice

Date: Thursday, March 17th
Time: 6 PM
Location: Boston City Hall, 5th Floor, Iannella Chamber

Participants: Dr. Karla Estrada, Cindie Neilson, Boston SpedPac, and MA Advocates for Children

Parents are welcome to attend and speak.

06/20/15

High School Redesign for Students with Disabilities – Tuesday, 6/23/15 – 6:30-8:00pm – Boys & Girls Club of Dorchester

What do High Schools of the Future Look Like for Students with Disabilities?

High School Redesign: Boston
PDF FLYER

The Mayor’s Office of Education and BPS seek your input into what 21st Century high schools should look like to ensure that every student graduates prepared for college, career, and life.

Please join us and share your recommendations!

Tuesday, June 23rd, 2015
6:30 pm to 8:00 pm

Boys & Girls Club of Dorchester
1135 Dorchester Avenue
Dorchester, MA 02125

Hosted by

HSR_Hb
Boys & Girls Club of Dorchester & BostonSpedPac.org

Supported by

HSR_Sb

Want to participate in the conversation?
Visit highschoolredesign-boston.org to learn more and submit your recommendations for high schools of the future at hsred.tumblr.com

PDF FLYER

HSR_flyer

04/13/15

Charter schools to pool resources for Special Education and ELL

By  GLOBE STAFF  

Charter schools across Massachusetts, which critics accuse of dodging a public duty to teach students with disabilities or language barriers, are stepping up their efforts to educate those students through a new statewide collaborative that will enable the institutions to share staff, training, and programs.

The Massachusetts Charter Public School Association is launching the collaborative with a $2 million federal grant it received last month. The association says the collaborative will allow charter schools to create economies of scale that, in turn, should result in more robust educational experiences for special-education students and those who speak limited English.

Many charter schools, which often serve just a few hundred students, experience difficulties sustaining programs because of fluctuations in enrollment, said Janine Matho, the association’s chief of policy and practice.

“At single-site schools, their programs grow and shrink depending on the needs of the students enrolled at the school,” Matho said.

One common problem charter schools frequently face is finding a speech therapist who can work two days a week with a small number of students, she said. But by creating the collaborative, charter schools could join forces to hire a shared full-time speech therapist.

The collaborative is taking root as many charter and traditional schools have been struggling to educate these two student populations. In Boston, the US departments of education and justice recently conducted a compliance review that found thousands of English-language learners in the city’s school system may be receiving insufficient specialized services or none at all.

Boston school leaders appear increasingly concerned the federal agencies might pursue litigation to force compliance. Last month, the school system appointed an attorney who specializes in compliance to oversee its program for English-language learners, while the School Committee discussed the compliance review in an executive session under the pretense of “litigation strategy.”

Education advocates, who have been critical of charter schools, said they were unsure whether the new charter-school collaborative could lead to better opportunities for students.

“The numbers tell the story,” said Roger Rice of Multicultural Education, Training & Advocacy Inc., a Somerville-based organization that works on behalf of linguistic minorities. “At least in Boston, charter schools do not take English-language learners in nearly the proportion of the Boston Public Schools, and they typically don’t take English-language learners with little command of English.”

But he added, “Any effort that pays attention to a long-neglected obligation to serve these kids equally I’m in favor of.”

Created under the 1993 Education Reform Act, charter schools are intended to be laboratories of educational innovation. The state’s 81 schools operate under looser state regulations than traditional schools, are rarely unionized, and almost always operate independently of local school systems.

Many charter schools have among the highest MCAS scores, but some struggle academically.

Critics of charter schools, including many teacher unions and superintendents, accuse charter schools of artificially inflating their success by forcing out students who are difficult to teach, such as those with disabilities or a language barrier — allegations that charter schools deny.

But enrollment of the two student populations at many charter schools has been lower than the enrollment rates of the same populations in the traditional schools in their communities. Consequently, a change in state law in 2010 required charter schools to step up their recruitment efforts of such students, which has lead to some increases in their enrollment at many schools.

According to the most recent state data, 8.7 percent of students enrolled in charter schools statewide during the last school year lacked fluency in English, up from 4.4 percent in the 2009-10 school year. Similarly, 13.6 percent of students in charter schools last year had disabilities, up from 11.8 percent in 2009-10.

Wide disparities continue to exist, though, between charter schools in urban areas and their respective school districts, especially in enrolling students with language barriers.

While many specifics of the new collaborative are being worked out, the charter-school association said many charter schools have programs in place that could likely be replicated or provide training opportunities for staff from other schools.

Match Community Day Charter School in Boston has achieved significant success in teaching English-language learners, who make up more than 80 percent of the school’s enrollment, by tapping a variety of strategies, such as intensive tutoring. On last spring’s MCAS, 55 percent of the school’s third-graders scored advanced and proficient in reading, and 88 percent scored in those two categories in math.

Charter school leaders said they look forward to the opportunity to work more closely with each other.

“We work hard to serve those students,” said Shannah Varon, executive director of the Boston Collegiate Charter School.

James Vaznis can be reached at jvaznis@globe.com. Follow him on Twitter @globevaznis.

01/13/15

Mayor Walsh State of the City Speech 2015 – Education and Special Education Issues

My plan for Boston’s future begins in our schools—all of our schools. We’ve talked about fixing our schools for decades. Now, we’re taking action.

2030 may seem a long way off. But consider this: the little girl who signed up for pre-school this week will be a high school graduate in 2030. Her life will tell a story of Boston’s 21st century. So a Boston that is thriving, healthy, and innovative

in its fifth century depends greatly on what we do for her right now.

Yes, we have some progress to celebrate—maybe more than other big cities. But families with school-age kids aren’t celebrating. A lot of the time they see a great school—quite literally—as a prize in a lottery.

Think about that. In the city that established public education; a city with the greatest universities in the world; access to an excellent public school is seen as a lucky break. Meanwhile, more than 30% of our high school students don’t graduate in 5 years. That is just not acceptable.

Next month, I will get the names of the final candidates for the next superintendent of the Boston Public Schools. Whomever is selected for this job, my message and orders will be clear: I am not satisfied. The Boston Public Schools can do much better for our kids. We have to do better. We will do better.

My administration is moving forward.

We are working with the BTU to ratify a plan to add 40 minutes of quality learning time–every day, for every student through 8th grade.

We are expanding high-quality, full-day pre-kindergarten, with the goal of reaching every 4-year-old in the city.

We are re-designing our high schools around pathways to college and career. We tripled the size of the Success Boston college completion program. And tonight I’m excited to announce a new partnership with the global software company SAP to create a high-tech career pipeline from Charlestown High School to Bunker Hill Community College.

We’ve revamped the Boston School Committee: by appointing an early learning specialist and a special ed advocate; and two members who are parents of kids in our Boston Public Schools.

And there’s still more to come. When I talk about building great schools—I mean it literally. Too many of Boston’s aging schools don’t meet the standards of 21st-century learning—or come anywhere close. So we are going to establish the city’s first permanent school building program in many decades. We’re drafting a 10-year Facilities Plan, to identify the needs in every neighborhood. And we’re creating a Boston School Building Authority, to tap the funding sources our city has failed to secure in the past.

We began last year with a new STEM Academy for Roxbury. Our next projects will be Fenway’s Boston Arts Academy and Quincy Upper School in Chinatown. I want to thank the parent councils at these schools. After enduring years of false starts, their dedication will pay off now, and for generations to come.

Finally, we know the opportunity gap begins outside the classroom. So our new Office of Financial Empowerment will launch a free child savings account program. Research shows that it’s a building-block of opportunity.

To recap: that’s a strong start; a full day’s school; real pathways to college and career; a permanent building program; and a commitment to fighting poverty. And I’m just getting started. We will not be satisfied with anything short of success: for every child in every family, at every school in every community in our city.