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.”
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.”
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.
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.”
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.
“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.
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.
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.”
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.
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.”
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.
Always with an eye toward life after college, the program encourages students to learn practical skills.
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.
MASSACHUSETTS ADVOCATES for CHILDREN
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.
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.”
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 firstname.lastname@example.org.
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.
Register today and join AT professionals as they teach participants the benefits and uses of the latest assistive technology tools.
Easter Seals Workshops Winter / Spring 2014
Asperger’s Independence Apps
February 19, 2014 5:30-7:30pm
Easter Seals Boston Office
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
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
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
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.
Presenter: Kevin Berner, MS OTR/L, ATP
AAC Language & Conversations: Make It Fun And Interactive!
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.
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