Spectrums Magazine Summer 2015 for the Autism Community

FREE PORTLAND AND SW WASHINGTONâ&#x20AC;&#x2122;S ONLY MAGAZINE FOR AUTISM SPECTRUM DISORDER

SUMMER 2015

SUMMER RECREATION YOGA FOR SPECIAL NEEDS PUMPER CAR TRANSITIONAL HOUSING FOR ADULTS RAPID PROMPTING METHOD (RPM) ACCEPTANCE VIDEO CAMPAIGN CHIROPRACTIC GONSTEAD METHOD

“We have been on this road of autism therapy for eight years now, and after visiting countless clinics both in Oregon and California, it is my sincere and humble opinion that the love and care we received at Sensory Kids is truly unparalleled.” — Searmi, parent and client at Sensory Kids

SUMMER’S ALMOST HERE!

CHECK OUT OUR INTENSIVE THERAPY PROGRAM

FAMILY-CENTERED, CHILD-DRIVEN

THERAPIST-LED

Occupational Therapy • Speech-Language THERAPY • physical THERAPY Counseling • Dance-Movement Therapy • SENSORY SEMINARS

ENROLL NOW FOR SUMMER

INTENSIVE THERAPY PROGRAM At Sensory KIDS we recommend an intensive model of therapy—and summer is a great time to devote to this type of program. This model includes a comprehensive evaluation, adult-only parent meetings, and OT sessions 3 to 5 times a week for approximately 30 sessions. Our years of clinical experience, as well as recent research, show that frequent repetition is needed to make solid changes in behaviors, self-regulation, and daily routines.

(503) 575-9402

CAREGIVER SUPPORT GROUP Led by parents living with sensory processing and regulatory disorders and responsive to participants’ needs. A place for camaraderie, exploration, and sharing. Held at Sensory KIDS for adults only (sorry, no childcare) the last Tuesday of each month, 7:30-9:00pm and the second Saturday of each month, 10:00-11:30am. Please RSVP: info@sensorykidsot.com or (503) 575-9402.

1425 N Killingsworth Street

OPEN TO PUBLIC

www.sensorykidsot.com

SUMMER 2015

contents

ACCEPTANCE CAMPAIGN AT LOCAL HIGH SCHOOL FEATURED SECTIONS Lifespan

8 10

Walkabout House Transitional housing provides extended family and growth opportunities. Fictional characters for the autism and LGBT community Creating heroic characters while exploring LGBT and autism issues.

HEALTH + WELLNESS

22 24 26

The Gonstead Method of chiropractic care Local clinic offers treatment specialized for pediatric patients with autism. Benefits of yoga for those with special needs Movement, breathing and awareness yield great benefits. My Turn Local autism advocate Krystel Anderson shares her deep and powerful life experiences.

Recreation

14 15

Free summer recreation opportunities No shortage of fun local activities. Access Pass Enjoy all that nature has to offer, free for those with disabilities.

EDUCATION

Local high school creates acceptance campaign Video campaign gives platform to those with autism to share experiences.

therapy

30 32

Rapid Prompting Method (RPM) Therapy method with a basis in assuming competence.

Provider Partner Directory Find local therapist, school, dentist and more in the Spectrumsâ&#x20AC;&#x2122; directory.

Pumper Car mixes fun and therapy Ride-on car developed by local inventor gaining research supporting its effectiveness with patients on the spectrum.

www.spectrumsmagazine.com

www.shayneberry.com

FROM THE PUBLISHER

SPRING 2015 | VOLUME 3, ISSUE 2 SPECTRUMS MAGAZINE LLC Courtney Freitag, Founder and Publisher

In May, I was honored to be named one of 31 Mental Health Heroes by Trillium Family Services, joined by some selfless individuals and organizations who work tirelessly to fight stigma. The important work done by those in our community to offer well-rounded resources for those in need is admirable. Those with autism often have co-existing conditions of mental health disorders that can go undetected. Research consistently shows that those with autism have an increased risk of developing psychiatric disorders than their neurotypical counterparts. This evidence is even more reason to support access to information, resources and lessening the labels we put on people. Also helping to tear down our preconceptions of people with differences is high school senior, Nerissa Morrow. The Evergreen High School senior has developed a video campaign allowing special needs students to share personal stories of living with autism. Combined with help from neurotypical peers, the campaign hopes to open people eyes and educate teens about ASD. Read about Nerissa’s campaign on page 18. Awareness education during adolescence can help once adulthood arrives. Walkabout House, a new transitional house in Hillsboro, offers adults with autism a bridge between family-like support and independence. Learn more about their unique housing option on page 8. Finally, it’s no secret that summer (and summer break!) is upon us. Adjusting to the lack of structure and predictability is tough for many autism families. We have a few ideas to keep the days full beginning on page 14. From free bowling to local natural play areas, opportunities are here to make some great memories. Happy summer!

Courtney Freitag Founder and publisher

www.spectrumsmagazine.com

Mailing address: 2240 N Interstate Avenue, Suite 200 Portland, Oregon 97227 Phone: (971) 998-5967 • Fax: (971) 327-6702 www.SpectrumsMagazine.com courtney@spectrumsmagazine.com Connect with us online! /SpectrumsMagazine @SpectrumsMag SpectrumsMag Editorial Advisory Board: Genevieve Athens, Michael Brooke, Amy Donaldson, Karen Krejcha and Jody Wright Spectrums Magazine LLC makes no warranty, guarantee, endorsement or promotion of any service, provider or therapy option listed in this publication or its website (www. spectrumsmagazine.com). This is a free community magazine created as a courtesy to the public. Spectrums Magazine LLC cannot be held liable for any action or decision based upon information found in this publication or the magazine’s website. It is the responsible of individuals to discuss any therapy or treatment option with the care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication maybe reproduced or transmitted without prior written consent from the publisher. ©2015 All rights reserved.

ON OUR COVER Summer is here and so are lots of opportunities to create memories. Swim holes, pools, hiking trails, movies, bowling and more are waiting. We compiled some of our favorite summertime opportunities beginning on page 14.

Open 7 Days a Week 9 a.m.-6 p.m. Speech Therapy Occupational/Physical Therapy Play/Social Skills Training Psychiatric Care Educational Consultant Academic Tutoring Private Therapy Gyms Dedicated Outdoor Therapy Space Low Sensory Waiting Room Available Self-Care Teaching Room Practitioners work as independent businesses

1700 NW 167th Place, Suite 220 • Beaverton, OR 97006 • (503) 985-9527 www.thecenterforhealthandperformance.com

www.spectrumsmagazine.com

lifespan ALL AGES AND ALL ABILITIES

IN THIS SECTION Transitional housing provides extended family...............................8 Representing autism and LGBT in works of fiction...................... 10

www.spectrumsmagazine.com

SOMETIMES WE ALL NEED A HELPING HAND As the parent of a child on the Autism spectrum, I’ve made a priority of serving the unique financial requirements of families like ours. At Waddell & Reed, we specialize in investments, insurance, and comprehensive financial planning. Whether you have one simple need or would like an overall evaluation, I can help. Call me today to discuss the products and services that may be appropriate for you.

Thomas G. Delaney Financial Advisor 700 NE Multnomah Street, Suite 1150 Portland, Oregon 97232 (503) 238-6036 • Cell: (917) 842-0132 • Fax: (503) 238-7056 tdelaney@wradvisors.com • www.portland.wrfa.com Waddell & Reed, Inc.

Securities and Investment Advisory Services offered through Waddell & Reed, Inc. a Broker/Dealer, Member FINRA/ SIPC and Federally Registered Investment Advisor. Insurance products are offered through insurance companies with which Waddell & Reed has sales arrangements. (2/15)

Occupational Therapy Specializing in Sensory Processing Disorders Auditory Interventions • DIR/Floortime • Handwriting Therapy Intensives • Interactive Metronome • Yoga Posture/Core Development • Qigong Sensory Massage Rhythmic Movement Training • Counseling Social Skills Training • Support Groups

AdvancedPediatricTherapies.com Portland & Vancouver locations: (360) 885.4684 www.spectrumsmagazine.com

LIFESPAN

Fostering independence Transitional home for adults with autism By Kristina Marie Smelley

Luke glanced up from his textbook to gaze upon the serene view and wooded grounds that provide a tranquil setting for the residents of Walkabout House in Hillsboro. Although Luke, a 20-year-old college student with autism, was ready to move out of his parent’s home, he was not yet prepared to live on his own. Walkabout House, a 5,000-square-foot transition home for young adults on the autism spectrum, offers a familylike home and apprenticeship program to help young adults like Luke learn to become fully independent. “I feel respected and like an adult here,” he says. “I am trusted to do things to help me learn to live independently. I like that this is a safe place and I don’t have to worry I will fail because I have help and support from Brad and Debbie.” Founders of Walkabout House, Brad Fowler and Debbie Hogan, live with the residents and teach them social communication, money management, pre-vocational opportunities and other life skills needed to eventually live independently and secure employment. There is no time limit on how long a resident can stay. Instead, parents and their young adult fill out a checklist of life skills and goals needed for independence, and then meet with Walkabout staff to develop an Individual Support Plan (ISP) to help reach goals. Each resident has a private bedroom and shares common living areas, including an entertainment room, large shop and garden. Meals are provided five nights a week. Residents are required to learn how to prepare food and make their own breakfast and lunches. Ryan, a resident at Walkabout House, praises Hogan for the delicious food. “I love to cook and guide them through planning, shopping and preparing meals,” Hogan says. She has a grown son with Asperger’s syndrome. “We want to them to have real life experiences to learn and grow.” Hogan also helps residents manage food allergies and can accommodate a gluten- and dairy-free diet if needed. Each resident is interviewed during the application process and must abide by a set of house rules, including doing their personal best to learn, grow and strive for independence. Residents also agree to respect other housemates and their belongings. Residents have jobs around the house such as yard work, working

in the shop, gardening, cooking or light housework. Residents can be paid an allowance by their families for their involvement in this pre-vocational program that Walkabout House offers. “Our residents experience what it’s like to have a real job, but in a safe setting,” Hogan says. “It gives them an opportunity to learn how to be successful employees while learning new skills.” Fowler, who has a background as a neuroscientist and entrepreneur, brings the latest developments in behavioral science to help residents gain good communication, interpersonal and self-advocacy skills. He helps residents craft resumes and practice interview skills when they are ready to find a job. If a resident has an entrepreneurial spirit, Fowler is eager to help them start their own business to reach their professional goals. Partnerships with local colleges and business are in development. Fowler says this provides residents with more opportunities to grow and use their skills. “Programs like the Portland Community College’s Yes to College program and the up-and-coming Portland nonPareil program, designed for autistic adults interested in computer game design, are very exciting,” Fowler says. “We want to work in collaboration with colleges and businesses that can create opportunities for these wonderful and talented young adults.” Barbara Avila, owner of Synergy Autism Center, is thrilled to be involved in making Walkabout House the best it can be for residents. Synergy Autism Center, Avila’s consulting business started in 2011, trains those living or working with individuals on the spectrum to offer opportunities for increasing independent decisionmaking and social engagement. These people may be parents, respite providers, teachers or residential home mentors. Avila has worked with Fowler for two years, helping him create a mentorship model for residents to target social-cognitive flexibility and independence. “The Walkabout approach of guiding young adults on the autism spectrum to full independence is a much needed resource, not only in our community, but in communities internationally,” Avila says. “Sadly, there are too many autistic young adults who have so much talent and Continued on next page

www.spectrumsmagazine.com

Photos courtesy of Walkabout House

“I feel respected and like an adult here,” says Walkabout House resident, Luke. “I am trusted to do things to help me learn to live independently. I like that it’s a safe place...” Housing, continued from page 8 ability but are still living at home, unable to find gainful employment and/or successful relationships.” Finding a good transition solution is important, Avila says. “Walkabout House seeks to be the ‘in between’ for these young adults who are not yet ready to be fully independent, but who are rightfully ready to move on from their parents’ guidance,” she says. “Walkabout mentors guide and support the fundamentals of decision-making so that the adult can make decisions independently in regards to employment and relationships in the future.” Walkabout House accepts Medicaid and private pay clients. Monthly costs include room, board and transportation, as well as all support services. Medications are administered and recorded as well.

“Our passion at Walkabout House is to help residents gain their independence,” Fowler says. “We know we’ve been successful when our residents come to a place where they have gained enough skills to keep a job and live confidently on their own.” For more information, visit www.walkabouthouse.com or contact Brad Fowler: bcfowler@gmail.com or (503) 554-0480. Kristina Marie Smelley is a Portland freelance writer and coleader of a local support group called REST for moms with children who experience special needs. She is married with two children, one with autism. She is also a local singer-songwriter currently working on a collection of life-skills songs for children with special needs.

www.spectrumsmagazine.com

LIFESPAN

Representing autism and sexual orientation in fiction Author develops heroic gay character with ASD By Heidi Cullinan

Humans love stories. Be it a retelling of our day, a cozy mystery or a Hollywood blockbuster, one of our favorite pastimes is wallowing in tales of what has happened, what might happen, or what we wish would happen. We love hearing about people and places we haven’t seen, but there’s a deep pleasure in seeing ourselves in story, especially when we’re featured as heroic, strong, or powerful. As humans, we cherish love stories, because we all dream of connection, of passion. Yet many of us discover finding tales where people like us are cast in the starring role can be difficult to find. There are absolutely works of fiction featuring people with Autism Spectrum Disorder (ASD), but not many, and not nearly enough with positive, affirming representations. Finding romances featuring adults with autism is even more difficult. Romances featuring characters with autism and who identify as lesbian, gay, bisexual or transgender? Very rare indeed.

cloud my sense of personal identity. Because I was close in age to the clients in the summer program, I made more than a paycheck. I made friends. Twenty years later, I was watching the television series Alphas, featuring the character of a young man with ASD who was literally a superhero. He quickly became my favorite part of the show. Not only was he was witty and clever and delightful as a character, but he reminded me of all the adults—young, old and in-between—I’ve known and worked with who have autism. The character of Gary Bell brought out all the things I loved about people with ASD, the strengths and the quirks, reminding that me people on the spectrum have a great deal to remind us about life, about what we value and what we prioritize. In my research, both scholarly and anecdotal, for writing Carry the Ocean, I quickly learned while there may not be many stories featuring LGBT adults with ASD, real life

We all deserve to see ourselves in stories. Not as sidekicks or sad examples, but stars— bright and shining heroes and heroines of our own epic adventures. I wrote a novel featuring a hero who is gay and has autism, and the germ for that idea came from several sources.

tells a very different tale. There have been a number of studies regarding ASD and sexual orientation, even more with gender identity.

The greatest source came from working years in several adult-assisted living settings, including two summer programs for young adults with special needs. In those settings, I regularly met, and fell in love with, clients with ASD. I loved everyone in the program, but I’ll admit it was a tossup over who stole my heart more: the clients with Downs syndrome or the clients with ASD.

Over a dozen studies have linked ASD and gender dysphoria, particularly for genetic females identifying as male or between genders. There’s also the research surrounding ASD and “extreme male brain,” and the work of Lilan Ruta et al finding significantly higher levels of male hormones in both men and women with autism. There are no clear answers from science about the link between gender identity, sexual orientation and autism, but there are certainly a lot of questions.

I was in my early 20s at the time, struggling to start my life and figure myself out. However, each interaction with this population came the reminder of what was important in life and not let what others deemed successful. It allowed me to dismiss my worries about what other people thought of who I was or how successful I managed to be—or even what success was—

Beyond science, however, is the fundamental issue of sexual orientation as a social construct. Most young adults with autism who find themselves attracted exclusively, or inclusively, to their own gender don’t experience a great deal of existential angst over who they Continued on next page

www.spectrumsmagazine.com

Fiction, continued from page 10 hope to fall in love with. It isn’t until others around them take pains to make it an issue. Sexual orientation and gender identity are hotly contested topics, debated from politics to dinner tables, and people with ASD remind us this conflict is social, not natural. Adults with ASD are whole human beings, experiencing sexual desire and romantic love the same as the rest of us. Be it biology or the ability to navigate an unplugged world with weighted social structures, it’s not a difficult leap for adults with ASD to find themselves attracted to their same gender, or to understand they are male or female when their biology says otherwise. They can see it, feel it, understand it. It doesn’t make a great deal of sense for people to argue otherwise when to them, their experience is so clear. I can’t pretend to be a scientist or a sociologist, and despite all my experience and research with ASD, I could fill rooms and houses with what I have left to learn. What I can tell you is that my novel featuring a hero with ASD—a hero, the one who saves the day, who leads the way for others, who rides off with his man on a train into the sunset—has resonated with readers like none of my other works to date have. Parents of children with autism have expressed their gratitude at seeing a child in a positive, uplifting role—not only in representation but in accuracy. I pull no punches with the character of Emmet Washington. He’s highfunctioning, yes, but he has all the tics and quirks I’ve known and loved from people with ASD in my life. He can’t drive a car, has trouble looking people in the eye because it’s often overwhelming, and don’t you dare put nuts in his banana bread. But he also loves trains, math, pizza and ice cream. He fights with his parents, and loves them, too. He has a difficult time expressing his feelings more often than people on the mean, but he’s clever and crafty, and he’s found ways to get around that. While I never want to drive the message behind my novel, wanting to tell stories more than give sermons, I’ll admit in Carry the Ocean I went out of my way to showcase a confident, competent successful young man who identifies as both gay and autistic. His ASD and his orientation are part of who he is.

that if we allow it, autism can enrich it. It’s been heartening to hear people who understand autism tell me I “got it right.” However, I’m most excited when people say the book opened their eyes to the way we often arbitrarily decide what is normal and what is not. What is acceptable and what is not. Who deserves stories, who gets to be the hero. Readers with no other significant exposure to autism have said they won’t be able to view ASD the same again, and several lamented the Emmets of real life are too often invisible and sidelined. We all deserve to see ourselves in stories. Not as sidekicks or sad examples, but stars—bright and shining heroes and heroines of our own epic adventures. We all deserve models and avatars. Stories are what teach us how to dream. Books, movies and television are where we let those hopes bloom into a fictional reality, their positive, affirming resolutions the fuel we use to chase our real-life happily ever afters. Stories of falling in love and finding our own family are a huge part of the human experience. Adults with ASD deserve those representations, too. No matter their gender identity or sexual orientation. I reflect on my previous clients and hope they have found love and happiness, that their lives are full of more opportunity than limitation. I hope beyond anything else that they see themselves as capable and deserving of whatever they want out of life, and I hope they’ve found ways to achieve their dreams. May that be true for all of us, whatever ocean we carry. Heidi Cullinan has always loved a good love story, provided it has a happy ending. She enjoys writing across many genres but loves above all to write happy, romantic endings for LGBT characters because there just aren’t enough of those stories out there. Her most recent release, Carry the Ocean, can be found in ebook and print wherever books are sold. Heidi is a vocal advocate for LGBT rights and is proud to be from the first Midwestern state with full marriage equality. Find out more about Heidi, including her social networks, at www.heidicullinan.com.

And while sometimes those facts give him a little more conflict than his peers might experience, they in no way limit his ability or right to a rich, full life. Because those of us who know and love people with autism, those of us who are on the spectrum, we understand it isn’t and shouldn’t be something that sidelines people from life. We also know

www.spectrumsmagazine.com

recreation INCLUSIVE WAYS TO HAVE FUN

IN THIS SECTION Free summer fun............................................................................................... 14 Access Pass for those with disabilities...................................................15

www.spectrumsmagazine.com

A unique ride-on toy that doubles as a therapy tool.

Shipments of the 2015 Pumper Car are arriving now! Order yours while supplies last. Available in 2 sizes.

Fun…

Jodi Petry, MS, OTR/L, BCP

Pediatric Occupational Therapy Clinical Specialist

Safe…

Kristin Brockmeyer-Stubbs, MS, OTR/L Director of Occupational Therapy

Durable… Tiffany Wright March of Dimes

Motivating… Maggie Reilly PT, MS, PCS Director of Physical Therapy

things you should know about the Pumper Car: Is easy to use • provides a full body workout • Looks “cool” • Is fun Is safe • Is durable • Gets used • is used by 400+ hospitals, clinics and schools www.powerpumper.com • (503) 722-2962 • info@powerpumper.com www.spectrumsmagazine.com 13

RECREATION

Hello, Summer...

Local fun for the whole family. Did we mention they’re free?

Pacific Northwesterners live for summer. A rise in temperature and a drop in rainfall means lots of time outdoors, an ongoing rotation of recreational activities and special offerings from local businesses. We’ve compiled some of our favorites—some geared toward special needs, many just offering fun for all ages and abilities.

Sensory Story time: The Multnomah County Library offers a special story time geared toward those on the spectrum, needing a smaller group or with sensory sensitivities. These inclusive story times are offered at various times and branches throughout the Portland metro area, including Hollywood, Northwest, Woodstock and Fairview-Columbia. More information: Visit multcolib.org/events/preschool-sensorystorytime or call your local library branch to inquire. Sunday Parkways: More than 108,000 Portland-area residents participated in the 2014 Sunday Parkways, an annual community event with live entertainment, activities and closed streets encouraging riders to bike, scoot, rollerskate, walk and more! More information: www.portlandoregon.gov/transportation/58929 Northeast Portland Sunday Parkways, July 26: 11 a.m.-4 p.m. (8 miles) Southeast Portland Sunday Parkways, Aug. 23, 2015: 11 a.m.-4 p.m. (7 miles) Tilikum Crossing/Sellwood Portland Sunday Parkways, Sept. 27, 2015: 11 a.m.-4 p.m. (7 miles)

Continued on next page www.spectrumsmagazine.com

gns

r te

e si

c ou ea

P ho to

NATURAL AREA PLAYGROUNDS: A popular European trend, all-natural playgrounds are popping up locally, foregoing the plastic slides and swings for stumps, logs and sand. Playing in natural environments is said to improve language skills and collaboration; improve imagination and creativity; support positive social development; and enhance balance, agility and overall health. Below are a few that stand out in our area. More information: Blue Lake Park (20500 NE Marine Drive, Fairview): www.oregonmetro.gov/parks/blue-lake-regional-park Khunamokwst Park (5200 NE Alberta Street, Portland): www.portlandoregon.gov/parks/61985 North Canyon Natural Play Area (Silver Falls State Park): www.learninglandscapesdesign.com/north-canyon-nature-play-area-silverfalls-state-park-oregon/ Westmoreland Park Nature Play Area (SE McLoughlin and SW Bybee Blvd, Portland) www.portlandoregon.gov/parks/57822

.co m

Summer, continued from page 14

ing

L an

d sc a

p e s D e s i g n,

.le a ww w

KIDS BOWL FREE: Register your family for a summer pass that includes free bowling at participating alleys all summer. More information: To find participating Oregon bowling alleys offering the free bowling passes, visit: www.kidsbowlfree.com/state.php?state=OR. Washington participating alleys can be found here: www.kidsbowlfree.com/ state.php?state=WA SUMMER MOVIES AND CONCERTS IN THE PARK: Free movies and concerts at local parks throughout the summer offer family entertainment and a chance for community engagement. More information: Find a calendar of events at www.portlandoregon.gov/ parks/article/525790

Access Pass for parks

Oregon and Washington is a region rich in history, renown for its lush forests, wildlife refuges, open nature areas and fish hatcheries. For those living with a permanent disability, the state Parks and Recreation offices offer the Access Pass, providing lifetime free access to the region’s hundreds of nature areas. To apply for an Access Pass, United States residents of any age must provide documentation to provide they have been medically determined to have a permanent disability that “severely limits one or more major life activities,” according to www.stateparks.com. A permanent disability is identified as permanent physical, mental or sensory impairment that substantially limits one or more major life activity, including: caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning and working. For more information, visit: http://store.usgs.gov/pass/access.html http://www.recreation.gov

153 186 16 6

Number of oregon state parks

Number of WASHINGTON state parks

Number of OREGON NATIONAL PARKS

Number of WASHINGTON FISH HATCHERIES www.spectrumsmagazine.com

education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION Promoting acceptance in high school........................................18

www.spectrumsmagazine.com

Coffee roasted by people with potential. Supporting adults living with developmental disabilities with employment opportunities in the artisan coffee industry. With every pound of coffee you buy, you commit to reversing the inequities those with disabilities face in the world of employment. We are people with potential.

Retail locations: SW 4th Avenue 21 12 d an th or w gs llin Ki 446 NE New Seasons Markets at d an rtl Po in e bl la ai Av t. and Whole Foods Marke

www.HappyCup.com www.spectrumsmagazine.com

EDUCATION

Promoting acceptance in high school Video campaign shares personal stories of autism By Alexis Morley

There aren’t a lot of things you can accomplish in just 90 seconds. However, if you’re Nerissa Morrow, a minute-and-a-half is all you need to start breaking down some common misconceptions about autism. Morrow, a senior at Evergreen High School in Vancouver, is hoping to increase awareness and acceptance of autism by creating a short video campaign. The video features personal stories and messages from students in Evergreen’s Social Communication Integration Program (SCIP classroom) to educate others about what it is like to have autism—in their own words. The video campaign will also feature messages from neurotypical students, holding up a whiteboard with their name and “I pledge to be accepting.” Once completed, the video will be broadcast on the school’s weekly newscast announcements, as well as added to the school district website. Morrow, who has a brother with autism, has also teamed up with Vancouver-based non-profit Autism Empowerment. The completed video will be added to the organization’s YouTube channel and shared with other area high schools. “The better people understand, the better they can empathize, learn from and teach others what they know about autism, and how autism looks differently across the spectrum,” says McKenzie Musick Cooley, a teacher in the SCIP classroom. “I think there is a lot of misunderstanding, outside of the autism world, about ‘what autism looks like’—when really, no two students are alike!”

“Nerissa is reaching a population of adolescents who will soon generalize their knowledge and acceptance of autism into the adult world,” Musick Cooley says. The students’ understanding and empathy will transfer from the classroom to their everyday life: in their workplace; in line at a grocery store witnessing a child’s meltdown; or one day possibly passing down their autism acceptance and education to their children, she adds. “The importance of shattering old myths, as we start over with a new way of thinking, and normalizing the beautiful differences that autism brings to the table is immeasurable,” Musick Cooley says. The video campaign took about a month to plan with a completion date planned for mid-April, however there have been some bumps in production. Originally, Morrow paired with other Vancouver high schools to reach more students and share more stories. However, original footage was accidentally deleted. Although difficult, Morrow didn’t have trouble rounding up participants. “It was a lot easier to get people to be in the videos then I thought,” she says. “It’s a little personal, [so] I didn’t know Continued on next page

Morrow balances school work with a strong commitment to motivate others to accept those with differences. It started with some frustrations witnessed in the classroom, she says. Classmates with autism would speak up to correct a teacher’s simple oversights, causing some annoyance among neurotypical peers. “I knew what [autism] looked like, but other kids didn’t know,” she adds. “When the kids with ASD would say something, other kids would get annoyed, roll their eyes.” The reactions made her angry, but she also understood it stems from a lack of understanding, rather than malicious behavior. “I don’t think we should blame them for not knowing,” she says. However, instead of letting her frustration fester, she decided to educate others about autism—and the video campaign project was born.

www.spectrumsmagazine.com

Nerissa Morrow, a senior at Evergreen High school, draws from personal experience that drives her new video campaign promoting autism acceptance.

“The better people understand, the better they can empathize, learn from and teach others what they know about autism and how autism looks differently across the spectrum. I think there is a lot of misunderstanding, outside the autism world, about ‘what autism looks like’—when really, no two students are alike!” Campaign, continued from page 18

Photos courtesy of the Challenger League

how much people from the SCIP class would want to participate.” However, she says she was pleasantly surprised to find at least four students with autism from her school were willing to share their stories and messages with others. Another benefit of the video campaign has been Morrow’s chance to expand her own understanding of autism. Her recent alliance and volunteer opportunities with Autism Empowerment have brought a greater understanding of adults with autism and the opportunities they have. Morrow volunteered at the group’s annual Egg Hunt for Acceptance of All Abilities, soliciting other classmates to join her. Autism Empowerment also offered support in Morrow’s high school by providing 1,200 bracelets with the message “Autism Empowerment=Acceptance of all Abilities” to distribute at the school’s spirit day assembly. Morrow supports the message 100 percent, saying her main goal for her video is to promote “being more accepting in general. If someone has autism they shouldn’t have to come out and say it. Just be more compassionate.” The students in the SCIP classroom enjoyed having a platform to share how living with autism affects them. “They expressed to me that they felt that they were able to finally explain to their peers why working in a group might be hard for them, how they feel when sitting in a loud, crowded assembly and how hard it was for them to learn how to talk to a partner in class,” Musick Cooley says. “This video allowed my students to practice their metacognitive skills as they looked at what they wanted others to really know about them.” As for other students at Evergreen and beyond, Musick Cooley says “just by having someone reach out and say to you ‘This is how I learn best, this is how I feel and I think we can do this together’ is a pretty powerful thing. Young people are far more empathetic and flexible than we give them credit for—they just need to be given the opportunity and platform to sharpen these crucial life skills.” There are plans for growth and expansion of the project to have multiple, more in-depth videos about how to interact and recognize someone with autism. The current video campaign focuses more on general education and personal stories of being on the spectrum.

Photos courtesy of Autism Empowerment

“Right now, I don’t know how many people know what autism is,” Morrow says. “I just think we need to talk about it more and acknowledge it.” She reports noticing some changes that indicate systemic change in her high school. For example, “most kids at my school didn’t know about the egg hunt put on by Autism Empowerment,” she says. “However, we had a lot of volunteers this year, and many of them were thankful to volunteer and excited to [come out again] next year.” Evergreen High School has also started a unified soccer team, which integrates both students with special needs and neurotypical ones. Also, more students with autism are being included in the school’s leadership classes, serving as buddies and helping plan for future school activities. “Our school has made it more of a focus,” Morrow says. As for district-wide changes, Morrow hopes other schools increase the amount of attention that autism gets. “I hope other schools do similar things, talk about it at assemblies, make notice of it in their announcements,” she concludes. “I just think we need to talk about and acknowledge it more.” Alexis Morley is a second year speech-language pathology Masters student at Pacific University. In the past she’s worked in Portland State University’s Autism & Child Language Disorders Lab as well as served as a volunteer with Autism Society of Oregon. She has previously written content for Seattle Magazine and InsideJobs.com.

www.spectrumsmagazine.com

health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS

IN THIS SECTION Chiropractic for special needs....................................................... 22 The benefits of yoga............................................................................ 24 “My Turn”.................................................................................................. 26

www.spectrumsmagazine.com

Yoga Visual evolved from the desire to share yoga with the deaf and special needs communities.

3-week Summer sessions meeting twice a week (classes limited to 3 students)

Session 1: Mondays and Wednesdays 6/29 through 7/15

Session 2: Mondays and Wednesdays 7/20 through 8/5

Tuesdays and Thursdays 6/30 through 7/16

Tuesdays and Thursdays 7/21 through 8/6

$100 for 3 weeks. Private sessions available. All classes are taught at Santosha in Bethany Village 4876 NW Bethany Blvd, L-4 • Portland, Oregon 97229

Cindy Hurlbert, RYT (503) 330-0775 www.yogavisual.com

Giving Every Child the Voice They Deserve Augmentative and alternative communication devices Sign language materials and instruction • Symbols Picture and letter boards • Speech therapy financial aid AAC Training

www.codsn.org/adlers-voice.html (541) 408-1092

Spectacular Smiles. Superior Service. As a team, we are committed to providing a unique professional experience in a loving and caring atmosphere. We tailor all of our treatments to fit the individual patient, so when you complete your treatment you have a smile that is every bit as unique as you!

Invisalign • Damon® System • iBraces™ Dentofacial Orthopedics • Sleep Apnea TMJ/TMD Treatments • AcceleDent

3943 Douglas Way, Lake Oswego www.dischingerteam.com • (503) 635-4439 www.spectrumsmagazine.com

HEALTH + WELLNESS

The power of touch

Chiropractic method uses neurological instruments to help those with autism By Kristina Marie Smelley Pain can be misleading, according to Drs. Nic West and Alyssa Kurth of West Chiropractic in Wilsonville. Their clinic is only one of a few in the Northwest offering the unique Gonstead Method, which uses neurological instruments to pinpoint areas of inflammation along the spine.

“My son had a tic that was causing him to jerk his head around. All he could tell me was that his neck hurt,” says Bonnie Arnold, mom of three with autism. “Our PCP suggested physical therapy, but we decided to give this a try instead. After only four adjustments, his pain and his tic were completely gone.”

“A patient may come in complaining of shoulder pain, when the actual issue is nowhere near the shoulder,” Kurth says. “With kids, there’s actually no pain at all 99 percent of the time, but symptoms manifest in other ways.”

The Gonstead Method uses a unique instrument, called a nervoscope, to detect heat levels caused by deep-rooted inflammation in the nerves near the spine, also known as “sublaxation.” When a nerve root is inflamed, the signals from the brain to the body are slowed down or stopped. This results in a nervous system that is not functioning at 100 percent.

Parents of children with autism are discovering the Gonstead Method of chiropractic to help address issues such as constipation, mood swings, hyperactivity, seizures or anxiety. Even infants with colic or digestion issues can be treated with Gonstead. It is the only technique combining x-ray analysis, instrumentation, visualization and static and motion palpitation to treat patients. Doctors using the Gonstead Method can often tell where adjustments should be made without patients describing their symptoms, which makes working with children who are unable to communicate much easier.

“The nervous system controls every function in the body,” Dr. West says. “When it’s working properly, the body is fully capable of healing itself. We don’t treat specific symptoms, but we have found that by detecting and treating the areas of inflammation, the body is able to restore normal function and it often leads to complete resolution of the original problem.” The nervoscope, which is connected to a computer, shows the amount of inflammation in each area of the spine using different color bars on screen. Red is greatly affected, yellow is mildly affected and green shows that area of the spine is in alignment. At each visit, the full spine is evaluated but adjustments tend to vary depending on which areas are calling for attention. “In kids with autism, the upper part of the neck often shows red, which means this is the main source of the inflammation that may be affecting everything else down the spine,” Dr. Kurth says. The adjustments are more gentle than those used by typical chiropractors, and there is usually less twisting, bending and loud “popping” noises. Gonstead chiropractors also focus adjustments primarily around the vertebral disc, the soft cartilaginous material between vertebrae in the spine. This is because this is one of the main sources of inflammation that puts pressure on nearby nerve roots. “We’ve tried lots of other therapies, including speech, occupational and cranial sacral therapies,” says Jamie Goodpaster, who has a son on the spectrum. “We originally decided to try the Gonstead Method because my son was suffering from cyclical vomiting and anxiety.

Families arewww.spectrumsmagazine.com 22 using the Gonstead Method of chiropractic care to treat issues such as constipation, mood swings, hyperactivity and more.

Continued on next page

Gonstead, continued from page 22 Now, he no longer has cyclical vomiting and his anxiety has improved. We continued treatment because we have also seen improvement in other areas that ASD affects, including food aversions, behavior and academics. Much of that has been since implementing treatment with Dr. West.” Inflammation may go unnoticed for many years until finally it causes a breakdown of tissue affecting the surrounding nerves, which may result in pain. The build up of problems can be avoided by beginning treatment at a young age. Treatments for children are often much easier and faster than for adults, according to Dr. Kurth. “I am really confident in this method of chiropractic care and feel my son’s health is better overall due to continued treatments,” Arnold says. “I’m planning to start my younger son there as well. Some doctors understand autism and some don’t. At West Chiropractic, they are so good with kids, and they really ‘get’ it.” For more information, visit www.mywestchiropractic.com.

Photos courtesy of West Chiropractic

Dr. Alyssa Kurth works on a pediatric patient using the Gonstead Method. “In kids with autism, the upper part of the neck often shows red, which means this is the main source of inflammation that may be affecting everything else down the spine.”

Kristina Marie Smelley is a Portland freelance writer and co-leader of a local support group called REST for moms with children who experience special needs. She is married with two children, one with autism. She is also a local singer-songwriter currently working on a collection of life-skills songs for children with special needs.

samhainpublishing.com

Available at: www.spectrumsmagazine.com

HEALTH + WELLNESS

Yoga and special needs Using breath and relaxation techniques to calm By Cynthia Hurlbert Yoga and kids. They go together like peanut butter and jelly. Yoga is playful and fun for children and, as an added bonus, a regular practice can provide many benefits.

While much of the information supporting the benefits of yoga is experientially based, Williams’ observations are backed up by research data.

If you’re an adult and regularly practice yoga, you’ve personally experienced its benefits. When a child finds comfort in a yoga posture, he finds his breath and his mind quiets. For a child with special needs, a thoughtfully designed yoga session can cultivate improved selfawareness.

In a 2012 study published in the American Journal of Occupational Therapy, researchers used a pretest-post-test control group design. Children with Autism Spectrum Disorder (ASD) were placed in a control group engaged in their standard morning routine. The intervention group participated in a daily 16-week Get Ready to Learn classroom yoga program. The researchers concluded the study “demonstrates that use of daily classroom-wide yoga interventions has a significant impact on key classroom behaviors among children with ASD.”

Jane Williams’ son recently started attending yoga classes and she quickly noticed a difference. “Zachary has become more aware of himself in space, showing greater ‘anticipation’ of obstacles in his parkour practice, and he seeks out calming breath on his own, demonstrating better focus as a result,” Williams says. “He is focusing better in his 1:1 tutoring as well.”

A 2011 pilot study published in the Journal of Alternative and Complementary Medicine outlines an intervention of an 8-week, multi-modal yoga, dance and music therapy program with 24 children aged 3-16 years with an autism diagnosis. The Behavioral Assessment System for Children, Second Edition (BASC-2) and the Aberrant Behavioral Checklist (ABC) were used to measure the outcome of the study. Researchers of this study concluded that a “movementbased, modified relaxation response program, involving yoga and dance, showed efficacy in treating behavioral and some core features of autism, particularly for latencyage children.”

Photo courtesy of Cindy Hurlbert

So how does this translate to our everyday world of raising children with autism? Yoga is the union of mind, body and spirit. And a yoga practice can provide benefits in all three areas.

www.spectrumsmagazine.com

Yoga can empower children and provide them with tools to help themselves.

Yoga promotes physical strength and muscular endurance. Core strength is improved while building balance, coordination and flexibility. Attention, focus and concentration can be increased. Yoga promotes inner harmony and can help children find more calm. For children with special needs, yoga can help encourage language and communication skills. It offers a way to connect to oneself and others. It can develop self-esteem and self-respect. Yoga supports breathing techniques and helps children calm their bodies and their minds, aiding in relaxation and aiding in better sleep and digestion.

Continued on next page

Yoga, continued from page 24 Williams has also noticed the benefits of practicing calm breathing techniques with her son. Zachary uses the breathing techniques at home and is encouraged by his tutor to practice them before their academic work together. His sleep has improved as well, with little stalling at bedtime and falling asleep faster, she says. In my classes, I use a jar with a lid and, depending on the child, we take the lid off and blow our wiggles or frustrations into it. We then “capture” them inside and put the lid back on quickly. One of the students translated this experience into the school environment by blowing his wiggles into his closed fist, then stuffing them into his pants pocket. That’s self-awareness and self-advocacy coming together in one brilliant moment! Yoga can be another tool in your child’s toolbox. Raising children is an evolving journey of building skills to support them in their successes and independence as they navigate their daily lives. Skills that can be transferred from one environment to another are important. By integrating yoga into your child’s life, the skills can happen at home or under the guidance of a yoga teacher. When looking for a teacher, seek one who can give consideration to individual needs and ability levels. Also look for an instructor who incorporates breathing and calming strategies into the session, along with the asana (physical posture) practice. Ideally, the yoga teacher has had training and experience in working with children that have special needs. They should embrace inclusivity, uniqueness and support strengths of each child.

Drama, Improvisation, and Creative Expression for Youth on the Autism Spectrum.

Chrysalispdx is a safe and open space to explore our imaginations through improvisation, creative drama and drama therapy techniques. The spirit of this group is a playful community where the students’ interests and passions guide our explorations. For youth ages 8-17 who have been diagnosed with autism or a developmental delay.

Initial session runs Saturday in August: 8/1, 8/8, 8/15, 8/22, 8/29 11am-12pm: ages 8-10 • 12:30-1:30pm: ages 11-14 2-3pm: ages 15-17 Cost: $125 Held at the Shout House: 210 SE Madison Street, Portland Contact Beth Ricketson for more information beth@chrysalispdx.com www.chrysalispdx.com

Every yoga session should be tailored to the unique needs and capabilities of each child. Those with expressive and receptive speech delays can benefit from visual supports that have been created to meet their specific needs. For creating a home yoga practice, Yoga Pretzel cards and the Yoga Spinner game have cards with illustrations that can help a parent provide a visual guide. To avoid frustration, be sure to modify postures or the rules of the game to meet your child’s ability level. How do you know if your child is benefiting from a yoga practice? Success is measured not so much by the achievement of a specific yoga pose, but rather by the process and the child’s responsiveness. Yoga can empower children and provide them with tools to help themselves. Yoga and kids, peanut butter and jelly—magic happens when the two come together. Cindy Hurlbert works for the Beaverton School District supporting kids with special needs, and is a certified yoga teacher and founder of Yoga Visual, LLC. She has completed two 200-hour teacher training programs along with specialty training for teaching yoga to children with special needs. She is fluent in American Sign Language and has special education experience, including autism and ADHD. www.spectrumsmagazine.com

HEALTH + WELLNESS

MY TURN

One person’s experience with autism

By Krystel Anderson

I will begin with the depth of honesty, which my dear reader, I hope you are prepared for.

when I am at rest, I experience waves of oceans in the midnight of my eyes.

I will describe my experience with a rapid tempo and a slight staccato of unperfected wit and ire. WE are NOTHING alike, and the space you search to bridge the emotional void is conjured up by your hurried expectations of humanness. Is that being you stare into ever going to measure and mimic your form? In this genetic code of mine, the shapes and sounds of this fragile being vibrate as I am consumed by the billions of interactions that crawl slowly across the sky.

1991. I was diagnosed with depression at the age of 11 and institutionalized. I sought out ways to pretend to be like others—after I understood I was being exiled. Much like William James in his text The Varieties of Religious Experience: “It is a positive and active anguish, a sort of psychical neuralgia wholly unknown to normal life.”

In quick succession like a blistering breath in, shadows of feelings, thoughts and objects collide. I react in ways you want me to because I feel the weight of your dissatisfaction and disappointment. In the corners of intelligence, I learned to be similar to others by calculating emotion systematically—but I feel quite intensely. I untangle it by gutting out pain and isolation on a ritualistic self-imposed tundra. I long to be like others, but the teeth of connection often spares me of love and comfort because there will be a time when others recognize I am “too different.” When my attention turns inward because the outside world is too painful, they will be blind and fail at every salvageable vector because they cannot concretely unhinge their animal uniformity. They request to render my emotional marrow through the torso, or by familiar words. Incredibly, it is demanded upon us (autistics), to shed the skins of our minds and use systems of human communication that has led our species into the holocausts of suffering. They will reject our minds and forms because they are unaware of the meadows and rivers inside our worlds. In doing so, we are to become like massless creatures crashing on volcanic rocks of stars. The world inside an autistic mind is still beautiful, even if it fails to have the mouthpiece of language and the heavy movement of meanings. So we rock, we grasp onto objects with features tangible to our own understanding. 1980. I was born sick. An underweight baby in the south of Germany, I struggled to breathe and could not suck or chew. Unaware to doctors for decades, I had Celiac disease, PICA, a blood disorder and a silent lesion growing in the middle part of my brain. My oddities of speech recognized by my parents, who were distracted by four other children. I had no awareness that I was different. In my world, letters and numbers wear dresses and speak in defined personalities. Tastes and textures blend into echoes and rhythms of emotions. Colors combine with sounds, and

I turned to music and writing. I played the violin, cello, alto clarinet and the piano. I was never classically trained. I would wait until everyone left the house and then I’d composed a unique piece and play it loudly and angrily until I was exhausted. I developed a duality and dissociation between the mental and physical. I immersed myself in religious writings in order to rationalize suffering. I studied early quantum physics, eastern philosophy and what was the genesis of the field psychoneuroimmunology. I wrote essays to ancient Saints, Clerics and Shamans and historians. I titled a series called Man of Madness where I’d write letters criticizing theories and beliefs. I saw them as heretics and elites selfishly ignorant to the human condition. I once wrote a line to Socrates, only a just man knows that pontificating is a luxury but enlightenment is reserved for those who experience legitimate agony. Your tired analysis lacks virtue; therefore you are in the absence of all knowledge. Suffering is the only path to virtue. Nobody knew the depth of my writing or knowledge because I comprehended early on that people are more concerned with what they believe than what actually what is. My behavior of self countered the comfort of others. I learned being different meant unlovable, so I remained barren and alone in my mind taking on shapes to understand my caretaker’s form. 1995. At 15, a torrent of seizures gripped my body. Leaving me with partial right-side paralysis and slurred speech. Each seizure would rip open the protective sphere and spill out the contents of my mind. I learned I could not feel love in ways that others do, and I was losing the characters of knowledge so quickly it felt like I was collapsing within the confines of my body. Grand mal after grand mal, my body ached for reprieve. The division between the supremely physical and mental drove down the sides of my brain, leaving me with parts of self, disoriented in space and time. My mind began to replace the limbs of body and I lacked the sensation attaching me to this Continued on next page

www.spectrumsmagazine.com

My Turn, continued from page 26 world. The seizures gnawed down my IQ to 88, and I was suffocating where numbers, words, memories and people floated out of reach. The doctors called it Conversion Disorder (a misdiagnosis, but a guess at the time). In layman’s terms, it was described as an inability to deal with stress caused me to psychological convulse. Psychotherapy treatment was where I felt truly comfortable in the audience of an intellect, but they were out of their league. I remember analyzing intelligence tests and being so disgusted I gave them an unethical drama of answers which led to a predictable diagnosis. They did however, conduct a battery of tests (that perhaps I was unable to manipulate) and diagnosed me with Autism. I never knew about that diagnosis until I was 29, where my parents, who are fiercely religious and ill equipped to discern biological concepts, channeled their fears into denial and pushed me to live a benign and ordinary life. 2000. I made it through high school, but missed a year-and-ahalf. I was embarrassed there as well, and told I wasn’t allowed to return until my seizures stopped because they were scaring my classmates and teachers. I was given an Individualized Education Plan (IEP) and never managed to stay in the special education room (because I always ran and wandered). I stopped caring about things I no longer could hear in my private world. I wanted to be a doctor and researcher, but the seizures shut off my access to a tangible repertoire of knowledge. My own intellectual access was cut off, but another world opened up and I started perceiving others in a different light. What was left was my speech. I finished my school and ended up getting a degree in Radio Broadcasting. Despite my challenges, I attempted to live independently by working part-time and working myself through school. I kept my mind away from loved ones because I feared the difference would cause a deeper separation. 2005. I was treated for a mistaken hormonal disorder found in the fall of 2002. The silent lesion turned out to be an immune system disorder, causing a cyst to develop in my brain and eventually hemorrhage requiring emergency brain surgery. Currently, the only medication used to reduce the swelling causes hallucinations and suicidal ideation. I decided against medication, risking growth and a brain bleed. I did this so that I could prove to myself I have the courage to live. I am forced again to choose between the fibers of my brain or the preservation of spirit. I choose spirit, but my body aches to belong here. The lesion and inflammation in my hypothalamus is unpredictable, and I live with thought it will bleed out again at any minute. Yet, I hook my hopes on the dutiful ordinary and dream to build a life. I have communicated to those in close relationships my concerns and fears, but it often falls on those unable to comprehend the gravity of such a burden.

Make that great leap of faith to a world you do not understand, because the richness outweighs the difficult journey. We are worth it. My secret world of fear and despair is often kept from others, and I would maintain relationships with individuals who had no concept of my divisionary world. I had divided my mind and body so that I could survive in the presence of others. I learned to mimic movements so I would be recognized by the human kind. For the most part, I adapted to speak in a smooth or disjointed manner so that the fear of dying would be snuffed out by the sounds of life. The longing of connection still lingers as I try to live inside the standards of ordinary. 2015. Eventually, I made my way through undergraduate school with the weight of student loans, part-time jobs and lost employment due to my health. I rarely had parental emotional or financial support. I fall inside a gray line with any services because I am viewed to be capable. Living in poverty and food stamps since age of 20, the shame constantly ripping my insides as my upper middleclass family questioned my faith in God. They informed me that my life choices (being gay) was the underlining sin and reason for my illnesses. I forgave them because I knew they were wrestling with ancient concepts. I forgave them because love has no definitions and conditions. I pressed on with fear, grit and determination and earned degrees in Scientific Communications, Homeland Security and Emergency Management. Nervous about my car making the journey from my home in southeast Portland to Hillsboro, I worry about student loans, I apply to jobs and try to make it all my doctors visits where the always say the same thing. I take a deep a breath on I-84 and sigh, saying “thank you God for all that I have been given,” and I mean it with mind, body and spirit. I managed to have a few relationships along the way, but they always ended in same fashion: me, a little too different to love, displaced somewhere in the lava of intelligence, left with body burning to survive. I have a final request: if you want to know what the autistic world is like, you need not to look into our eyes but gaze upon our hearts. Make that great leap of faith to a world you do not understand because the richness outweighs the difficult journey. We are worth it. Krystel Anderson is a Portland advocate and consultant working on opening doors and centering her self-worth on a positive note. She welcomes post cards, letters and even just a nudge of encouragement. She can be reached at kryanderson@ gmail.com

www.spectrumsmagazine.com

therapy THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Rapid Prompting Method (RPM)............................................................ 30 Pumper Car finding a niche with special needs............................ 32

www.spectrumsmagazine.com

What: Imagine Possibilities provides progressive daytime services for adults and children with intellectual and developmental disabilities through care, creativity and community. We offer daily activities, such as volunteer opportunities, community outings, and groups.

Where: 4450 SW 184th Ave Aloha, Oregon 97007

Contact: Miranda or Kevin at 503-649-6110

Currently enrolling new participants! Please call if interested!

Coordinated care for children with autism Providence offers a full range of autism services, including: Social-skills training and day camps Team assessment and case management with pediatric specialists l Nutrition services and feeding clinics l Parent-training program and co-therapies l l

For information or an appointment, please call one of our clinics: Providence Child Center: 503-215-2233 Providence St. Vincent Medical Center: 503-216-2339 Providence Newberg Rehab and Pediatric Services: 503-537-3546 www.ProvidenceOregon.org/pncc

www.spectrumsmagazine.com

THERAPY

Presuming competence: Photo courtesy of Angie Paquin

Rapid Prompting Method (RPM)

“I quickly discovered my son had a whole lot more going on intellectually and with language processing than I ever realized,” says Angie Paquin of her son Liam, age 13. By Courtney Freitag

Presuming competence of someone with autism is an important step in the movement from awareness to acceptance. A method that acts as both a therapy and educational support is gaining traction as a means to express learning, understanding, reasoning, thought and communication. Rapid Prompting Method (RPM) is viewed primarily as an educational method for individuals with autism, traditionally considered more severe on the spectrum and are verbally unreliable speakers. It was created by Soma Mukhopadhyay to teach her son, Tito, who was diagnosed with severe autism and who has used RPM to thrive into a published poet and author. Angie Paquin of Portland learned of RPM through online groups, blogs and books. However, because her 13-yearold son, Liam, was verbal, she initially dismissed RPM as a therapy option that would benefit her son. However, a local workshop with Virginia-based RPM provider Elizabeth Vosseller proved otherwise. “I quickly discovered that my son had a whole lot more going on intellectually and with language processing than I ever realized,” Paquin says. “I heard my son’s true voice for the first time ever, including his thoughts on having autism, which we didn’t even know he realized. After a workshop, RPM became the number one priority for my son. It has been a life-changing experience for our whole family!”

According to the Mukhopadhyay’s website (halo-soma.org), “RPM uses a ‘Teach-Ask’ paradigm for eliciting responses through intensive verbal, auditory, visual and/or tactile prompts. RPM presumes competence to increase students’ interest, confidence and self-esteem.” Prompting competes with each student’s self-stimulatory behavior, and is designed to help students initiate a response. Student responses evolve from picking up answers, to pointing, to typing and writing which reveal students’ comprehension, academic abilities and eventually, conversational skills. RPM is a low-tech approach in that is requires only an instructor, student, paper and pencil. But the science behind how and why it works for some individuals is much more complex. RPM differs from other autism therapies such as Picture Exchange Communication System (PECS), Applied Behavior Analysis (ABA) and the often-criticized Facilitated Communication (FC) by using prompting to elicit a student’s independent response. RPM doesn’t use physical touch, as is done in facilitated communication—in which a facilitator places a hand over the user’s hand or arm to guide to letters, pictures or a board for communication. Some physicians and therapists feel more research and scientific studies are needed to Continued on next page

www.spectrumsmagazine.com

RPM, continued from page 30 conclude the efficacy of RPM. And critics of FC and the American Psychological Association issued a position paper against the method, arguing that it is a “controversial and unproven communicative procedure with no scientifically demonstrated support for its efficacy.” While each person with autism responds differently to therapy options, RPM is a relatively new type of therapy and there are very little studies that have been conducted on its efficacy. As with any therapy, discuss treatment options with a physician, therapist or clinician to see if it’s the right fit for the individual. However, those using RPM argue that it is foundationally different from FC. “There is no physical support,” says Dana WoodhouseNagy, a Portland mom using RPM with her 13-year-old son, Ethan. “In fact, a child’s stims are not addressed and are ignored. As far as the argument that it is not supported by evidence-based practices, I would counter that ABA was considered experimental by insurance companies until recently, despite a variety of studies and the fact it has been used for decades.” Woodhouse-Nagy adds that every methodology had to start somewhere. “It’s very easy to allow ourselves to become stuck in one mindset and unwilling to consider anything new,” she says. Loreta Boskovic was managing a home-based ABA program for her 13-year-old son, Niko, when she borrowed a book on RPM. The method has proven to be invaluable in learning about her son, his intelligence and his capabilities. She

agrees that RPM does differ from FC and has no physical touch during the sessions. “My involvement is holding the letter board, naming the letters as he touches them, and writing down his responses,” Boskovic says. “But I am not touching him in any way. My goal is to eventually move him to a wireless keyboard so that Niko will be typing on his own.” RPM is primarily academic-based with sessions typically lasting 30 minutes. Lessons are pre-planned and in-depth, but kept to a concise length to keep the child’s attention. After a dialogue begins or specific questions are asked, the student uses a letter board to point to individual letters that spell out responses. Depending on abilities, those using RPM can eventually use keyboards and computers to communicate. Pre-planning for lessons is important and sessions generally start with short bouts of about five to 10 minutes. Boskovic says her and Niko have daily RPM sessions to complement the ABA program he attends. Their sessions last 35 minutes during the week and close to an hour on the weekends. The pair begin with Niko sharing how his day has been and dive into eighth-grade academics, such as history and chemistry, using a combination of books, handouts and videos. It doesn’t take long for both children and RPM administrators to learn a lot. “Ethan is very kinesthetic and has a long of motor planning challenges, so we try not to overwhelm him,” WoodhouseNagy says. “He works very hard during the session. You would be amazed how much information you can teach in 20 minutes.”

Rapid Prompting Method (RPM) has proved an invaluable tool to tap into 13-year-old Niko’s intelligence and capabilities. His mother, Loreta Boskovic, holds a keyboard or letter board to help Niko communicate.

Photos courtesy of Loreta Boskovic

www.spectrumsmagazine.com

THERAPY

Ride-on toy used as therapy tool Kids improve academics and behavior By Courtney Freitag

The light bulb moment for Mike Jones came at age 15 while laying in a Utah hospital bed recovering from surgery: he would dedicate his life to helping children. Fast-forward 47 years and the Portland inventor is gaining notoriety with the Pumper Car, including evidence-based research showing the benefits for those with autism. The ride-on car, propelled by pumping motion like a rowing machine, began as a toy marketed to large retailers nationwide. What began to happen next went beyond Jones’ plans for the Pumper Car. “It was my dream that it get recognition,” he says. “Helping those with special needs is not anything I planned when I started this, so I can’t take credit. But it’s very rewarding.” Adaptive physical educators, therapists and clinicians began implementing the cars in treatment and saw measurable results. This peaked the interest of researchers who began studying the merits of the Pumper Car, deeming it effective in helping 29 different special needs, including Down Syndrome, Spina Bifida, Cerebral Palsy and Autism Spectrum Disorder. “Oregon therapists are discovering the amazing benefits,” says Dr. Brian Rogers, professor of pediatrics and director of the Child Development and Rehabilitation Center at Oregon Health and Science University, in a letter of support. He notes that “occupational and physical therapists nationwide are discovering the many benefits of adding a Pumper Car to their therapy sessions. They love it because it gets children excited about doing therapy and produces the results they need.”

Photo courtesy of Pumper Car

In 2005, the Children’s Mobility Foundation donated 15 Pumper Cars to the Central District Autism Program at the University of Hawaii. Researchers there noted the need for methodical, rigorous research linking sensory and motororiented interventions to the effects in the areas of social, communication, cognitive, adaptive and behavior.

www.spectrumsmagazine.com

Preliminary data conducted in special needs classrooms within the public school setting

indicated that the children who used the Pumper Car not only increased academic response, but also decreased challenging behaviors. Dr. Janet L. Hauck, assistant professor of the Physical Activity in Youth with Disabilities Laboratory at University of Michigan’s Department of Kinesiology, connected with Jones in 2008. As a former adaptive physical education teacher, Hauck believed in the merits of the Pumper Car. The lab is currently focused on investigating the relationship of infant and toddler physical activity on motor skill development and obesity in children with and without disabilities. The lab is also continuing the pursuit of physical activity and motor skill intervention development for infants and children with Down Syndrome and ASD. “Children with autism are often more successful in individualized physical activity and sport,” Hauck says. “The Pumper Car, much like a bicycle or other riding device, is very individualized. The Pumper Car can also support a typical adult’s weight, meaning an adult can model riding alongside their student or patient. The ability to demonstrate and participate as a practitioner is ideal when working with children with disabilities.” The University of Hawaii’s Oahu Central District also began preliminary research in 2008, collecting raw video footage of children with autism using the Pumper Car. The group monitored the effects of using a sensorimotor ride-on utility (SRU) and “stereotyped behaviors” often associated with children on the spectrum. These behaviors can interfere with academic responding, social interaction, communication and other appropriate behaviors. A preliminary pilot study was conducted with 15 Pumper Cars used by special education students. The study’s results showed that the children using the SRU not only increased their academic responding, they also decreased certain challenging behaviors. They were also motivated to choose the SRU during their break times when given a choice of reinforcers, according to Dr. Aletha Gomez of the Central District Autism Program in Hawaii. “When kids get on, they don’t feel like they’re different or have special needs,” Jones said. “Everyone wants to be them. It’s something they’ve never experienced before.” For more information, visit www.powerpumper.com.

www.spectrumsmagazine.com