Spectrums Magazine Summer 2016 from Autism Empowerment

FREE PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR AUTISM SPECTRUM DISORDER

SUMMER 2016

DADS HELPING DADS KIDS CARE CLUB GROOMING AND HYGIENE LUKE’S JOURNEY FUND SOCIAL COMMUNICATION DISORDER

SUMMER 2016

contents

SOCIAL CLUB FOR TEENS AND TWEENS FEATURED SECTIONS ADVOCACY

My Life A local girl pens a poem about her nonverbal brother with autism.

EDUCATION

HEALTH + WELLNESS

LIFESPAN

Mighty Mitch Autistic Advocate Mitch Thatcher inspires authors.

Dads Need Support, Too Local fathers share insight and parenting experiences.

RECREATION

20 22

29 30 32

PHAME A Portland nonprofit creates artistic opportunities for everyone. Social Club for teens and tweens Finding recreational opportunities for youth to connect.

Autism Serves Kids Care Club Youth volunteers making a difference locally.

Winning the war on grooming Strategies for sensory and adversities to grooming for those with autism. Understanding Social Communication Disorder A fairly new diagnosis, SCD is often diagnosed with autism. Stories from the Spectrum Editor Karen Krejcha shares about autistic authenticity.

THERAPY

35 36

Lukeâ&#x20AC;&#x2122;s Ride raises therapy funds Local dad set to conquer 200-plus miles to help launch Lukeâ&#x20AC;&#x2122;s Journey Fund for families in need. Directory of Community Provider Partners Categorized listing of local providers.

www.spectrumsmagazine.org

FROM THE PUBLISHER

SUMMER 2016 | VOLUME 4, ISSUE 1 SPECTRUMS MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Mailing address: Autism Empowerment P. O. Box 871676 • Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org spectrums@autismempowerment.org

It was Sept. 16, 2012 when I received an email from Courtney Freitag introducing herself. She was planning to launch a magazine dedicated to those on the autism spectrum in the Portland metro area. She was forming an editorial advisory board to help guide the content and future of the magazine and wondered if I’d like to be a part of the Spectrums Magazine adventure.

Connect with us online! /TheSpectrumExperience /AutismEmpowerment

Being an autistic self-advocate, parent advocate and cofounder of Autism Empowerment, the desire was that I’d bring a unique perspective to the magazine. For me, it was an easy yes. My husband John and I co-founded Autism Empowerment in June 2011 and we were in an exciting grassroots nonprofit stage. Courtney’s vision to strengthen the autism community through Spectrums tied right in with Autism Empowerment’s four foundational pillars – Accept, Enrich, Inspire and Empower.

@SpectrumsMag @AutismEmpowermt SpectrumsMag

In March 2013, the first edition of Spectrums was published, and it was an immediate hit with self-advocates, families, educators and service providers. As more quarterly issues were published, we found it difficult to keep enough copies in our office. The demand was great, and Courtney’s vision of a positive autism community publication had come to fruition.

Autism Empowerment

ON OUR COVER

Photo by Karen Krejcha

www.spectrumsmagazine.org

Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumsMagazine.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their 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 may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2016 All rights reserved.

Today we honor Courtney’s legacy with the first issue of Spectrums Magazine published by Autism Empowerment. Thank you for joining us! We look forward to serving you in your autism journey.

Autism Empowerment

Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within the Autism and Asperger community.

It was Feb. 8, 2016 when I received another email. Courtney was stepping away from publishing the magazine to focus on her family and wondered if Autism Empowerment might consider acquiring Spectrums Magazine to become a nonprofit program of Autism Empowerment so that the great work that was started could continue. We were humbled, excited and admittedly, a bit overwhelmed.

Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrums Magazine™

Our first issue of 2016 focuses on the importance of Dads and the role they play in their children’s lives. In honor of Father’s Day and dads everywhere, see our story on page 16 highlighting support for dads in the autism community.

the

A GRASSROOTS COMMUNITY MAGAZINE, Spectrums is a program of Autism Empowerment. With a mission of promoting a culture of acceptance, enrichment, inspiration and empowerment, these area professionals will help guide the magazine’s future content providing expertise, insight and direction. We are honored to be partnering with some of the region’s finest self-advocates, professionals, parents and experts in the field of autism. AMY DONALDSON, Ph.D., CCC-SLP • Portland State University Autism & Child Language Disorders Laboratory asdchildlab.research.pdx.edu/home.html Amy L. Donaldson is an Assistant Professor in the Department of Speech & Hearing Sciences at Portland State University (PSU). Her research focuses on the assessment and intervention of social communication skills in children with Autism Spectrum Disorder (ASD) within the natural environment, as well as intervention efficacy. She is also Director of the Autism and Social Communication Lab. COURTNEY FREITAG • Founder and Former Publisher of Spectrums Magazine Courtney Freitag founded Spectrums Magazine in 2013 and continued publishing quarterly issues until the Autism Empowerment acquisition in 2016. Her experience in communications, graphic design, writing, editing and marketing spans 20 years, complemented by raising a son on the spectrum.

JOHN KREJCHA • Autism Empowerment www.autismempowerment.org John Krejcha is cofounder of Autism Empowerment and serves as Program Director where he oversees Community Outreach and facilitates a monthly support group for dads. John was a Community Champion finalist at the Greater Vancouver Chamber of Commerce Business and Leadership Awards in 2014. John is father to two amazing sons on the autism spectrum and is married to cofounder, Karen who is also diagnosed as Autistic/Aspie.

TARA O’GORMAN, MSW • SpectrAbilities www.spectrabilities.com Tara O’Gorman, MSW, is an independent consultant and advocate for individuals and families living with Autism Spectrum Disorders (ASD) and provides consulting for organizations working within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is a proud mom to two sons, including an teen with Asperger’s.

HEATHER PARROTT • Parent Advocate Heather Parrott is married to Chris and is a homeschooling mom to Zachary, Ryan and Joshua. She became passionate about autism education when her oldest son was diagnosed with Asperger’s. She is a volunteer with Autism Empowerment and worked on the Autism and Scouting program. She enjoys writing, working with the Boy Scouts of America and watching her youngest play baseball.

BRIAN TASHIMA • The Spectraland Saga www.spectralandsaga.com Brian Tashima is the author of The Spectraland Saga, a young adult science fiction/fantasy series about a teenage guitarist on the autism spectrum who travels to a world where music is magic and autism is a superpower. The first book in the series, Secret of the Songshell, was a finalist in the 2012 USA Best Book Awards for fantasy fiction, and the second book, Mystery of the Moonfire, was released in October 2015. Book Three is scheduled for a 2017 release. www.spectrumsmagazine.org

FROM THE PUBLISHER

DEAR SPECTRUMS MAGAZINE READERS: The Autism Empowerment Board of Directors, founders and volunteer staff welcome you to the fourth year of Spectrums Magazine, and the first issue ever published as a nonprofit program of Autism Empowerment. We are incredibly excited to be carrying on the publishing legacy of Spectrums Magazine founder, Courtney Freitag. Mother of two children, Courtney has often said that the milestone of launching and publishing Spectrums was similar to bringing a third child into the world. Keeping with that analogy, it would be fair to say Autism Empowerment has adopted that third child and will be doing our very best to help Spectrums Magazine grow and thrive. Fortunately, Courtney will still be meaningfully involved in the “parenting” process through assistance with graphic design, layout and copywriting.

We understand the autism community can often be divisive but we have worked over the years to be positive and proactive autistic and autism community allies. We’ll be talking about meaty subjects such as ableism, neurodiversity, identity-first and people-first language in future issues. The important thing we wish to share here now is that we believe each person has the right to identify themselves the way they wish. In how this looks in Spectrums Magazine, you will see articles published in the magazine and on our blog that utilize different linguistic perspectives. Our aim is to not get hung up on semantics, but instead to show respect and acceptance to others and focus on providing rich and robust content.

We are excited to get to know more

So who is Autism Empowerment?

of our autism community members Autism Empowerment At this point, previous readers is a passionate peopleand allies. We’re eager to hear your of the magazine might be powered 501(c)3 nonprofit curious as to who Autism devoted to stories and learn your strengths, your organization Empowerment is and what enriching and empowering kind of changes to expect the lives of children, teens, challenges and your triumphs. with the magazine in terms of adults and families in the distribution and content. Some Autism and Asperger good news to start is that we’ve communities. Founded in expanded our number of print Vancouver, Wash. in June copies and distribution points by almost 20 percent. We 2011, our programs promote a culture of acceptance for will also be expanding into the Seattle market by the end all abilities. of 2016. We pilot programs locally with the goal to expand Spectrums Magazine will continue providing the excellent regionally, nationally and worldwide. The vision we editorial features, human interest stories and resources work toward is culture change leading to a society that you’ve come to expect. Over the next year, you’ll see authentically accepts, includes and empowers all youth new features, too. Starting with this issue, we’ve added and adults on the autism spectrum, equipping each a Featured Section called Advocacy. We’ve also changed person to live their best life possible by pursuing the the title of “My Turn” to “Stories from the Spectrum – goals and dreams that matter most to them. Autism from an Autistic viewpoint.” Our four foundational pillars of positivity are Accept, We believe strongly that in order to meaningfully Enrich, Inspire and Empower and we build those pillars improve life for youth, adults and families within the into every program and service we develop. As a growing autism community, autistic people must be actively seen grassroots nonprofit led by people who are neurologically and heard. diverse, Autism Empowerment has learned we achieve significantly greater social impact when we meaningfully There is a popular saying in the disability rights partner with individuals, businesses, educators, service movement, “Nothing About Us Without Us.” Originally providers, foundations and professionals who have a political motto, this slogan communicates the idea that complementary missions, goals and core values. no policies about a particular group should be decided without the full and direct participation of members of We are excited to get to know more of our autism the group affected by those policies. community members and allies. We’re eager to hear your stories and learn your strengths, your challenges and Autism Empowerment celebrated its five-year your triumphs. We appeal to you for your support and anniversary on June 3, 2016. Since inception, we’ve made investment in the future of Spectrums Magazine, Autism sure that every member of our Board of Directors and in Empowerment and the autism community at large. key decision-making roles either identifies on the autism Thank you for your support and encouragement, your spectrum or has autistic family members. financial donations and your volunteerism. Thank you

Continued on next page www.spectrumsmagazine.org

Autism Empowerment, continued from page 6 for being the person you are. We look forward to meeting you along the way in your own autism journey.

Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrums Magazine™ This magazine would not be possible without the support of Autism Empowerment Board Members: Gary Borghello, John Krejcha, Chris Parrott, Paul Pitsenbarger, Peggy Pitsenbarger, Brian Tashima and Sara Wilber. We’d also like to give a special thanks to attorneys William Goodling, Michele Wasson and William Wilson at Stoel Rives LLP in Portland for providing pro bono legal services during the magazine acquisition.

UPCOMING EVENTS AT

Autism Empowerment For details, see Calendar of Events at www.AutismEmpowerment.org Saturday, July 16 Luke’s Ride 2016 benefiting Luke’s Journey Fund Sunday, July 31 2nd Annual Summer Family Picnic (Klineline Park) Autism Empowerment hosts eight regular support groups, social clubs and service activity gatherings. Please see our website for dates/times. Support Group: Adults on the Autism Spectrum (18+) Support Group: Parents raising Adults on the Autism Spectrum Support Group: Asperger/Autism Parent Support (6-12 grade) Support Group: Dads’ Autism Support Group Social Club: SW Washington Tween and Teen Social Club (ages 11 - 19) Social Club: Tween and Teen Book Club (launching July 2016) Social Club: Friday Family Game Night (Pre-K through high school) Service Club: Autism Serves Kids Care Club

Photo by Brenna King

Passing the torch… It’s often hardest to let go of the things we are most proud of. In 2012, when I had the murmurings of ideas for a niche magazine specifically for the autism community, I’d barely wrapped my head around what autism even was. I spent nine months booking meeting after meeting: educators, therapists, families, those with autism, their families, their friends—all with a resounding “yes!” that a magazine would be an enormous boon for the community. One of those first meetings was with the Krejchas, as they had just launched their grassroots nonprofit, Autism Empowerment. Their tenacity, commitment and courage to make something out of nothing was admirable. Throughout the years of publishing the magazine, they were often a go-to, whether it be participating in their community events or just using them as a sounding board. Fast forward four years later when the unavoidable shifts of life had me looking at a fork in the road. Knowing that my family’s needs and big life changes were upon us, I made the tough decision to let the magazine go. And I looked to Autism Empowerment to help carry on the important task of bringing free and robust resources to the autism community. Their mission, values and programming was a natural fit to carry on publishing the magazine and ensuring it continues to serve our ASD community. Our goals and work ethics align and I know they will put everything into bringing you the best quarterly magazine. Change is hard. However, when you’re confident that the change brings positive continued support for the autism community, getting out of the way is a bit easier. As I’ve written before, the magazine was the best therapy and teacher for me, at a time I needed it the most. I can’t wait to see where this publication goes and how many more lives it will enrich. Thank you for the opportunity to bring it to you for the years that I did. Courtney Freitag Former publisher/ founder

www.spectrumsmagazine.org

Photo by www.shayneberry.com

advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY

IN THIS SECTION My Life, a poem by Asjia Chapin............................................................. 10

www.spectrumsmagazine.org

ADVOCACY

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. --Heidi Cullinan

Continued on next page www.spectrumsmagazine.org

My Life By Asjia Chapin

I wish to tell you my different life, the ins, the outs and so, Your heart will warm, beat a bit and then start to grow.  With passion to comfort me and really make me know, That when I scream or hit or when my temper blows, You’re willing to do anything and simply run the flow. I wish you knew what I was thinking when I looked up to you,  You didn’t ever second guess, you’re always right on cue.  Then you could stick up for me, if you only knew...  What went on behind your back, I’m not sure why or who, Words leave me feeling small inside, like the deepest shade of blue. I wish you knew the kid I was, the kid I truly am,  My body is always locked up in a cage, but I am who I am.  On simple things that should not and would not to a young man, And always after gloomy days, I know I need a plan. But I also wish I could explain to you my joy and pride, To the rarest little flickers of happiness inside.  When I listen to my music that is only mine,  To filter through my head and slowly calm my mind. I wish I could carry my music everywhere I went,  So maybe no one would notice me, that is all I meant. Or even if that’s too hard, I wish there was a vent,  I wouldn’t bother anyone, I wouldn’t make a dent. I wish I could escape my strange life, I’m not the one to blame, It’s the mothers, kids, and big tall guys holding crooked canes. That come by everyday and call me...names,  To beat me up, with their words, but I never can exclaim... “SOMEONE PLEASE COME HELP ME, AREN’T WE ALL THE SAME?” But most of all I wish, at the end of every day,  Someone would turn around, face me, tilt their head and say, “You’re a good boy, come on let’s play,”  I’d turn around too and finally say, “okay!” But, I don’t think that’s happened in my 12 whole years,  But, I’m still hoping, I’m still wishing after all my tears,  That maybe someone kind will come and I’ll finally say, “I’m clear,” Of this brain disorder that fills my atmosphere.

Asjia wrote this poem when she was eight years old and in the third grade. She wrote the poem to promote autism acceptance and honor the perspective of her 12-year-old brother, Mekhi who is on the autism spectrum and non-verbal. Asjia’s poem was first recited at her school talent show and brought the audience to tears. Asjia understands the significance of being an advocate and a voice for her brother and so many others on the autism spectrum. During Autism Acceptance and Awareness month in April, Asjia recited her poem for both the Vancouver City Council and Camas City Council. A closed-caption version of Asjia reciting the poem can be enjoyed at Autism Empowerment’s YouTube channel: https:// youtu.be/OrRYzA5aJeg Asjia Chapin is currently nine years old and lives in Camas, Washington with her parents, Mike and Angie, her older brothers, Mekhi and Kaliq and her older sister, Imani. She and her family are active volunteers in the Autism Serves Kids Care Club and the local community. www.spectrumsmagazine.org

lifespan ALL AGES AND ABILITIES

IN THIS SECTION Mighty Mitch...................................................................................................... 14 Ensuring dads are supported..................................................................... 16

www.spectrumsmagazine.org

Fa ll No reg w istr op at en ion !

The Miracle League of Vancouver believes that everyone deserves a chance to play America’s great past-time: Baseball! Multnomah County Intellectual and Developmental Disabilities Services Division (DDSD) is a part of a statewide services delivery system. We provide case management services to adults and children and help individuals and families choose and plan services and supports to live a healthy, safe and productive life. Services that may be available depending upon eligibility:

Adaptive baseball program for kids and adults with any disability No age limit Everyone plays-bats-wins Promoting positive interaction with our Buddy Program Serving Portland-Vancouver area www.miracleleagueofvancouverwa.org info@mlvw.org • (360) 524-5423

         

Case Management IEP Assistance Family Support Employment Transportation to work Supported Living Residential Career Discovery In-home Support for Children In-home Support for Adults

Want more information?

https://multco.us/dd 503-988-6258

Saturday, July 16th, 2016

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

A bike ride from Portland to Seattle will help raise funds for families in our community in need of assistance to help pay for therapies they could not otherwise afford.

We are trying to raise $25,000 to grant to families in need in our community. Make a donation anytime at:

www.AutismEmpowerment.org

Click on donate and then choose Luke’s Journey Fund Thank You for your support!

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

Autism Empowerment is a 501(c)3 public charity Tax ID # 45-2455219

www.spectrumsmagazine.org

LIFESPAN

Mighty Mitch

Presuming competence for life-long success By Carrie Thatcher he opening notes of Pomp and Circumstance began to T blare through the crowded auditorium. Tears coursed down my cheeks. Among the stream of students in blue graduation caps and gowns was Mitch. Only a handful of us in the audience knew what a triumphal moment his walk was. No one knew he was nineteen years old, or that he was on the Autism Spectrum. To anyone else, he looked like a typical high school senior. While we sat through the talks and awards, my mind ran the years we had known before. Mitch was a fighter from the beginning. He arrived in life nearly six weeks early, barely weighing four pounds. I remember his pediatrician looking at his tiny Yoda-esque body and saying, “He will make it. I’ve seen it before. It’s in their eyes. You can tell when you have a fighter on your hands.” In his first months, he overcame underdeveloped lungs, heart murmurs, unstable body heat and a non-existent sucking reflex. He was champ material. As his mom I thought the worst was over when we brought him home. For two more decades, he would inspire me, teach me and conquer things I couldn’t imagine. e had never heard of Autism or Asperger’s until we took W Mitch to see a team of specialists at OHSU. At the age of

two Mitch had been diagnosed with Failure to Thrive. His head circumference had stopped growing. He had difficulty swallowing solid foods. He also showed delays in crawling and walking. Over a series of multiple appointments with physicians, therapists and specialists it was determined he had Delayed Development. On and off until he was enrolled in school Mitch would attend various therapy treatments to help close the gap on these developments. Though Autism had been suggested, it was dismissed because it was not severe enough for his age. Fully aware of his development issues, we chose to enroll Mitch in school when he was closer to six years old. Hoping the added months would be helpful. As a social person, Mitch was adored by his teachers. He wasn’t prone to tantrums or lashing out. He kept himself safe by wearing a winter jacket at all times. The zipper pulled to the top, the hood tight. His only nervous tick was a constant twirling of the forelock of his hair. This made him an easy classroom member. However, Mitch also wasn’t comfortable with many things, especially things you touch. The square edges of pencils, the rough paper around crayons, and the physical effort of scissors. None of these were safe for him. Over time, Continued on next page

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Mitch, continued from page 14 this put him behind in class. No amount of coaxing would encourage him. It was also becoming apparent that he liked to play alone and that routine was necessary. If he arrived at school and a substitute was there, everything fell apart. Pretty soon it became apparent to his teachers and us that private school could not offer Mitch the personal assistance he needed. It was hard to say good-bye to the safe haven he had been attending, but he found hope in the idea that his new public school would be just three blocks away. He took delight in our daily walks, and scooter or bike rides we took to get to school. Public school allowed Mitch extra academic assistance through his Individualized Education Program (IEP). With the plan in place, Mitch was able to access special P.E. classes for gross motor skill building, twice weekly Occupational Therapy for manual dexterity, one-on-one pullout time for math, and daily speech therapy. I believe he spent more time out of the standard classroom than in. Mitch worked hard. In his three years, he completed the P.E. course, learned to type, improved his handwriting skill and speech skills. He also began to explore theater. Theater might seem like an odd choice for a person on the spectrum. All the changes, distractions and commotion might appear overwhelming. For some, it might be. For Mitch, it was a lifeline. Mitch didn’t ask to do theater; his parents put him in it. Our goal since his infancy was to give Mitch as normal a life as possible. We really believed that he could catch up or find a way to not be held back in life. We tried T-ball, Scouting, and Tae-Kwon-Do. None of them stuck. Theater was just another option. Mitch’s sister, Elaine, was joining Christian Youth Theater (CYT) and we determined Mitch should attend, too. It wasn’t an instant hit. It was, however, safe.

Th Photos courtesy of

atcher family

We nudged him to stay a bit longer. On a very difficult night, when all the world was collapsing around Mitch, one young man said “Good night, Mitch.” That single act was the catalyst of hope Mitch needed.

That hope carried Mitch on stage and through school. As well as in front of television cameras and even newspaper covers when his story became the inspiration for New York Times bestselling author, Karen Kingsbury’s novel Unlocked. It was quite a journey for a kid who preferred the safety of life in a zipped tight blue jacket. As the glow from the book launch and publicity subsided, Mitch was faced with high school. The double daunting task was finding a way to accomplish high school and keep his challenges in check. After some pursuit, we decided on WAVA K-12, a fully accredited online program. The flexibility allowed Mitch to work from home on his best schedule. It also gave him the complete academic experience he needed. Though it took multiple years of strenuous effort, Mitch completed all the required coursework and all the state standardized testing. For the testing, his only accommodation was a private or nearly private room. He was always the last to leave the testing room but after three years of attempts, he completed them all. His days in theater began to wane. School requirements were overtaking him and he felt he had achieved all he could in that theater group. During his junior year, he bid theater a fond farewell. He pushed on in school. During the middle of his senior year, Mitch was given the opportunity to utilize his theater and technical skills as an intern with Autism Empowerment. From his internship he learned more about others on the spectrum, he advocated for adults on the autism spectrum at community meetings and assisted in events such as the Easter Egg Hunt for Acceptance of All Abilities. A year has passed since Mitch walked across the stage to receive his diploma. It has been a new year of decisions and learning. Asperger’s and adulthood are a new combination for all of us. Adult employment is the prime goal at present, as is a future career as a voice over actor. Every one of these ambitions will require a different set of skills and guidelines. As an adult, Mitch will be teaching others about people on the spectrum as well as learning how to be one. We have no doubt that he will find great success in both. It will just take time. Carrie Thatcher is a freelance writer living in Washington with her husband, Garen. They are proud parents to their son, Mitch and two daughters, Elaine and Clarissa.

Mitch Thatcher’s life story was the inspiration for Carrie Thatcher’s non-fiction book, Good Night Mitch and Karen Kingsbury’s fiction book, Unlocked.

To purchase Good Night Mitch: http://amzn.to/1WoJ9G8 (AE’s affiliate link at Amazon.)

To purchase Unlocked: http://amzn.to/1sBD6Br

www.spectrumsmagazine.org

LIFESPAN

Dads need support, too Finding resources and programs for men By John Krejcha

When it comes to autism-related parenting resources, there are many blogs, books, support groups, websites and forums dedicated toward moms. Parenting resources in general often share a female perspective. Despite a growing number of fathers in traditional or single parent families who actively participate in child rearing, resources specifically focusing on fathers are few and far-between. Dads need support, too. Take a moment and visualize active autism parenting support groups within our local community. What did you see? If you pictured a room filled with moms talking about the challenges, struggles and triumphs of their youth and adult children, that would be quite common. If you imagined a co-ed parent support group where both parents attended together, you might have pictured utopia. Unfortunately, co-ed autism parenting groups are rare, and when they do exist, the moms outnumber the dads in the room, often by at least four-to-one. Because this article is geared toward dads, maybe you imagined a gathering for fathers? Did you visualize a group of dads, grandfathers or male caregivers casually sitting at a table or standing around a grill talking about IEP options and parenting successes? Did you see dads from all walks of life chatting about puberty, hygiene, school transitions, the autism grief cycle and that often dreaded F-word: feelings? The truth in our community and regions throughout the country is that it is rare to find active in-person support groups for dads parenting children on the autism spectrum or with other disabilities. Why is that the case? How as a village working to be stronger together do we enrich and empower fathers, providing the parenting support, education and resources that they need? First, we start a conversation. Autism Empowerment and Spectrums Magazine recently conducted a survey of dads in Oregon and Southwest Washington who were parenting children of all ages and abilities on the autism spectrum. Some respondents regularly attended Autism Empowerment’s monthly support group for dads, however 65 percent of survey respondents had never attended a support group of any type. Dads who attended support groups reported many benefits: • Relief from feeling they were not isolated • Getting tips from other dads who have been in similar situations.

• Bonding and friendships with other dads walking a similar journey • Assistance with IEPs and school-related issues • Figuring out strategies on how they could be a better parent • Learning about recreational, social and educational resources • Improved relationships with their son/daughter(s) and spouse/significant other • Strengthened faith Doug Underwood, a Vancouver dad of a son on the autism spectrum, says “I don’t feel alone, I started to bond and build friendships with other dads walking a similar path. I really struggled with the lack of acceptance that was happening with my son and our family,” he continued. The dads’ support group has helped me with that”. A goal of launching the Dads Support Group was to give everyone the same starting point when we walk into the meeting. We are all dads, so we all have at least that in common and it’s a great starting point to build a relationship. Jason Keesee, a regular Dads Support Group attendee and AE volunteer of running the Parents of Young Adults on the Autism Spectrum support group, has two adult sons. “I come because I want to give back to the dads with younger kids,” Keesee says. “I have already been through the IEP battles, and I have walked the path that many of the other dads are just starting. This is my time to give back.” Some are fortunate to have the support of friends and families along their autism journey. However, not everyone has that. “It’s easy to feel lost and not know where to turn or where to start when it comes to finding help for our special needs children,” Keesee adds. “I felt it was my duty as a parent of a child (or two, in my case) on the autism spectrum to help others who did struggle and are struggling. As parents, we are all in this together.” So, why with all these benefits for dads are more men not attending support groups? What would be incentives to make them attend?

Continued on next page www.spectrumsmagazine.org

For more information, please check out these options and resources: Autism Empowerment – SW WA Dads’ Autism

ARRO Autism Dads and Men Support:

Dads of Disability:

Support Group:

facebook.com/groups/autismdadsandmen/

www.dadsofdisability.com

from 7-9 p.m.

DadsMOVE :

WA State Father’s Network:

bit.ly/aedadsgroup

http://dadsmove.org

http://fathersnetwork.org/

Meets the 3rd Friday of most months in Vancouver

facebook.com/groups/340499526101697/

Dads, continued from page 16 • Volunteer dad ambassadors to mentor and answer questions for other dads • Guest speakers (Autistic adults, service providers, other dads) • Outside opportunities for socialization (e.g. bowling, BBQ, family events)

Anxiety is a common feeling that dads experience and nothing to be ashamed of. In Autism Empowerment’s monthly support group for dads, the atmosphere is casual, friendly and accepting. Dads identifying on the autism spectrum are always welcome and their contributions are valued.

The top reasons dads mentioned for not attending support group meetings were fear and conflicting schedules.

If you or someone you know wants to attend an autism support group but is trying to overcome that hurdle, consider these words of advice from long-time support group attendee, Aaron Blackwelder. “Support is essential. Take the first step to embrace autism. There is beauty in it.”

• Personal anxiety or social discomfort • Fear of not being able to relate or being seen as weak • Date, time or location was not convenient • Lack of childcare

“Support groups are necessary because dads have some unique challenges when it comes to children on the spectrum, but my schedule prevents me from coming,” says Jeff O’Gorman about the challenges of making meetings. Robert confessed, “I’m nervous I would be an outsider at the group and seen as weak in my home. The way I was brought up, men were to be the providers, the ones who fixed everything. I want to be a better father but I’m embarrassed to take that first step.”

Moms and significant others, you can also help with words of encouragement, support and strength. Most dads do want and need support from their peers but they need your acceptance and understanding too. For the dads out there in our autism community, you are not alone. There is support for you in-person and online. Reach out and engage. When we learn together, we forge connections. Having the opportunity to bond with other dads who get what we’re going through adds strategies for your parenting toolbox and peace to your journey. You and your family are worth the investment.

Adrian shared, “As an Aspie dad parenting an Autistic daughter, I think I could offer some insight to a fathers’ group but getting over my social anxiety to make it to that first meeting has been tough.”

John Krejcha is co-founder of Autism Empowerment and serves as Program Director. He oversees Community Outreach and facilitates the SW WA Dads’ Autism Support Group. John is father to two amazing sons on the autism spectrum and is married to Autism Empowerment co-founder, Karen.

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Photo by Justin Krejcha

recreation INCLUSIVE WAYS TO HAVE FUN

IN THIS SECTION PHAME....................................................................................................... 20 Social club for tweens and teens................................................. 22

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RECREATION

Arts for all Inclusive arts education and experiences

By Keith Loria

It was back in 1984 when a group of families who had the shared experience of having a family member with a disability, wanted to find a creative outlet for their loved ones in the Portland community. “If you looked around at the options back then for socialization, enrichment, quality of life and creative expression, they were few and far between,” says Stephen Marc Beaudoin, executive director of PHAME.

built upon a belief that the creative arts are for all. Their belief is that through the arts, PHAME students, artists, teachers and the greater community can discover their own inspiration.

I think what makes this place so special is it allows people that work differently in the general population, to go to school for creative arts

Originally, the acronym stood for Physically Handicapped Actors and Musical Entertainers, however it has evolved into Pacific Honored Artists, Musicians and Entertainers. PHAME provides yearround arts programing to primarily post-high school adults, ages 17 and up, with developmental disabilities.

The Portland-based nonprofit offering a community where without it being dumbed down. adults with disabilities and their families creatively —Eliza Jensen engage, learn and grow in an “That’s where the need is environment that is supportive for transition,” Beaudoin and comfortable. “Before people says. “College is not really with disabilities were really represented at all in popular an option a lot of time. PHAME keeps students engaged, culture and the media, there was a whole different learning, active and engaging in social networks.” landscape. Here were people with a shared interest in arts and creative expression, and the unfortunate shared PHAME offers two 15-week terms throughout the year, experience of a total lack of programs.” creating life-long learning opportunities and classes in visual arts, creative writing, acting, music theory, That was the genesis of PHAME, born from the desire choir, dance, musical theatre and much more. PHAME to give a creative voice to those who were silenced, and also offers highly specialized workshops and intensives

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Phame, continued from page 20 taught by renowned Northwest artist teachers. Students also participate in a number of staged productions held throughout the year, including concerts, performances, cabarets, recitals and art shows in Portland and beyond, as well as touring across the state. “The arts are important for anyone. Creative expression, the opportunity to create alone and with others, to listen and learn, to find your voice, all helps individuals become more themselves,” Beaudoin says. “Data tells us a very clear story—arts engage every individual’s life and make them better and healthier.” Barb Smith is the parent of 24-year-old PHAME performer Jason Young and says the programs they offer changed her son’s life. “When Jason aged out of transition education at 21 at the high school, there was nothing for him,” Smith says. “We were working with a community partner to try and find jobs and weren’t successful for quite some time. Six months after leaving school, he walked in to the kitchen one day in tears, and said, ‘I have no one and nothing to look forward to.’ It was terrifying to hear.” The family immediately started looking for solutions, and Jason’s sister found PHAME, and since he always had an interest in music and dance, they gave it a shot.

Photos courtesy of PHAME

“We came in right away and started classes and saw an immediate change in this young man who was practically non-verbal and now was making friends and connections and being a ‘real’ human being with something to look forward to every day,” Smith says. “He has done a little bit of everything—dancing, musical theater, choir, song writing and acting—he just loves it all.” Eliza Jensen, a student at PHAME, learned of the program after moving to Portland in October of 2014. Having taken theater in college, Jensen was interested in seeing what they had to offer. She signed up for a few classes and snagged the lead role in PHAME’s production of Up the Fall, a musical play about a Portland girl’s journey through a realm where figures from world mythologies and folk traditions intermingle, similar to Into the Woods. “I think that what makes this place so special is it allows people that work differently in the general population, to go to school for creative arts without it being dumbed down,” Jensen adds. “I think often the community treats being ‘different’ as ‘less than,’ with the belief that we can’t do what others can do. But PHAME is different. It caters to people with development disabilities but works towards the values of inclusion and dignity.” It’s experiences like these that have made PHAME such an Continued on page 33

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RECREATION

S O

A L

U C L

for tweens and teens

Giving kids a place to connect By Tara O’Gorman

I never saw myself as a person who would run a social group for tweens and teens on the autism spectrum. On the contrary, for many years I was more likely to be quickly removing our family from social situations than arranging them. My husband and I created a “flight plan” for social situations when my son was around two years old. When we knew a meltdown was coming, we did our best to quickly remove us all from a party or family dinner. Sometimes we were successful and staved off the inevitable meltdown until we reached the car. Usually, we felt shame and embarrassment as we were unable to remove him fast enough, and then were subject to stares and well-meaning (however unhelpful) suggestions. I felt tremendous guilt over the belief that we continually put him into situations I knew he could not handle. Over the next few years, these situations led to feelings of alienation and loneliness for us all. Several years ago, my family was grateful to find a local game club designed for kids on the autism spectrum. After many years of isolation, I was thrilled to find other families like ours, with similar experiences and a common desire to connect our children with like-minded friends in a welcoming, judgment-free environment. For the first time, I saw my son connect with other children. They played outside, they took turns playing video games—and they laughed! My son was eight years old, and I FINALLY felt comfortable in a place with people who understood what was happening. There was no judgment, no pieces of unwarranted advice that did not apply to our son, no need to run away. I finally felt part of a community and my son had real friends.

As he aged, I felt him pulling away from this group. Although he had made a small group of friends, they were choosing play away from the group and resisted attending. For my son, the problem was simple but unresolvable. He was having a harder time around younger kids and just wanted to hang out with friends his own age. So, we pulled away but managed to maintain some close friendships. We approached the teenage years, and I saw some needs that were not being fulfilled. My son and his friends had “graduated” from social skills groups. They still managed some one-on-one time or conversations by FaceTime or Skype, usually while playing video games, but we were missing the in-person social time. We occasionally attended a game club in West Linn run by Portland Asperger’s Network (PAN), but for us it was a long drive, and few of his good friends were ever able to attend. He really enjoyed spending time there, and it is a great local resource for those able to travel easily to the area. During a parent support group through nonprofit Autism Empowerment, I had the opportunity to discuss with co-founder John Krejcha my vision of a more local group for tweens and teens. I am a consultant and facilitator for a young adult social group through PAN, and had some ideas for a group in Vancouver I felt would meet the needs of my son and so many others in our community. From conversations with some local friends, I knew we had at least half a dozen boys who would love to form a group that allowed our increasingly independent kids a chance to hang out while the parents had a bit of a break themselves.

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Social, continued from page 22 My vision was to provide a fun, independent, peer-mentored social group for youth ages 11-19 and a place for families to interact and find support in a safe, non-judgmental environment. I did not want a social skills group. Our kids had spent years in school programs and private therapy aimed at increasing social awareness. My aim was pure fun. We met to discuss my vision and create an action plan. I knew my vision would not provide for the needs of all, but I felt it would be a great opportunity for middle- and high-school aged kids who were capable of some independence and desired a chance to interact with peers, under limited supervision. Rather than hovering adults, I hoped to use peer mentors, most of whom were siblings who were compassionate and accepting. The Southwest Washington Tween and Teen Club was born! While I knew we had 6-8 families who were committed to attending, I was nervous about our success. Would those families continue to come each month? Would the needs of both the kids and the parents be met? Would the peer mentor group be successful? Would everyone feel safe and comfortable, and would they all enjoy themselves? After more than six months, our group averages about 50 in attendance, which includes parents and siblings. We have a large game room where the hub of activity takes place. A smaller game room is available for those seeking a quieter atmosphere. We have a food room where kids and parents congregate for pizza and snacks. The parents have a separate room to relax and chat with friends. The parent room quickly formed a support group, which has been invaluable to many parents who have felt isolated in the past. Personally, I have seen amazing changes in many of the kids. They are free to be themselves, without anyone commenting on behaviors or manners. Some parents are initially cynical that their child can handle being on their own without a lot of parents nearby to intervene. Fortunately, most have found that their child enjoys his or her freedom and, as an added bonus, find themselves enjoying some adult time in the parent room. Are there hiccups? Definitely. Sometimes kids are upset that they lose a game. But in an environment where there is less judgment or pressure than they may have experienced in other social situations, those same kids quickly calm themselves or are distracted by another child who invites them to come play a different game. Sometimes the noise can be overwhelming, and sensory overload leads to minor meltdowns. The peer mentors in particular have been critical to our success when it comes to these minor issues. They recognize when someone may be uncomfortable or struggling to fit in. I often find a group of two or three mentors sitting down and playing a board game with someone who was upset by the chaos of the game room. Instead of a sensory situation which could have escalated into a meltdown, or a desire to leave the group altogether, the peer mentors help provide different options for tweens and teens to take a break and still enjoy a game and social interaction in a calmer, quieter environment. Overall, there is laughter, fun, and a sense of belonging. We have had more than one family travel from Portland for our group. I have been blessed with a hug from a kid or two who

For upcoming dates and details, visit www.autismempowerment.org The Tween and Teen Social Club: Meets the third Saturday of each month from 6-9 p.m. in Vancouver and is for middle-school and high-school students (ages 11 through 19) who require minimal supervision. bit.ly/aetweenteen Autism Social Club & Game Night: Meets monthly, open to kids of all abilities (K-12) and their families. It is held the last Friday of most months in Vancouver from 6:30–8:30 pm. bit.ly/aegamenight The Portland Asperger’s Network (PAN) Game Club: Holds monthly game clubs for ages 5-18 and a Teen Club for various activities. The monthly club meets the second Friday of each month in West Linn from 6:30–10 p.m., except in December. The Teen Club generally meets on the fourth weekend of each month (dates, times and locations vary.) www.pdxaspergers.org

is grateful for the Tween and Teen Club. Most families are able to stay the full three hours, and the biggest complaint is we ONLY meet once a month! Tara O’Gorman, MSW is an independent consultant and advocate for individuals and families living with Autism Spectrum Disorders (ASD) and provides consulting for organizations working within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is a proud mom to two sons, including an Asperger’s teenager.

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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION Autism Serves Kids Care Club....................................................... 26

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We need your support to keep this a free resource. We can’t do it without your help! Did you know? • This issue will reach 20,000 throughout Portland and SW Washington • It costs about $3 per person per issue to provide this printed resource • The magazine is led by Autistic and Parent advocates who aim to provide work opportunities for people in the Autism community

If you appreciate the information contained in this publication and want to spread Autism Acceptance, please consider a donation.

Donate at bit.ly/aedonate or www.AutismEmpowerment.org Support Spectrums Magazine today and become an Ambassador for Acceptance of all Abilities! Your donation is tax-deductible Tax ID# 45-2455219

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EDUCATION

Learning through volunteering Autism Serves Kids Care Club

By Karen Krejcha

Studies show that children who volunteer from an early age are more likely to adopt healthy lifestyle choices, do better in school, build friendships, strengthen life skills and continue to volunteer into adulthood. For youth on the autism spectrum, challenges with social communication, sensory issues and educational accommodations often isolate them from participating in service learning and community-building activities. Frequently kids on the autism spectrum are used to being the recipients of services, whether that be educational, medical, social or a combination. Few opportunities exist that give those with ASD a meaningful and consistent way to volunteer independently, alongside family and friends. They get used to people doing things to help them, but not so much the other way around. Knowing that children of all abilities have strengths, talents and gifts to share, Autism Empowerment launched a youth volunteerism program allowing children with ASD to volunteer alongside typically developing peer mentors, family and friends. The program hopes to be a pilot project in Clark County, and serve as a model to be replicated throughout the United States. Program Director John Krejcha says, “Rather than re-inventing the wheel, we connected and partnered with an existing national youth volunteerism program

through the Points of Light Foundation called GenerationOn. We adapted their existing Kids Care Club curriculum to be more autism-friendly with activities where children of all ability levels would have an opportunity to participate.” Founded last fall, Autism Serves Kids Care Club began with a seed money grant of $2,050 from the Giving Circle of Clark County. “The Giving Circle members were very impressed by the impact the Kids Care Club would have on our local community,” says Giving Circle chairwoman Tessa Roth. “We were even more impressed by the ambition to be able to take the modifications made to make the program friendly for all learning abilities and share that with the rest of the nation. Autism Empowerment is helping kids in our community make a difference in our community and sharing their learnings with the rest of the country. The Giving Circle was glad to provide funding to enable the start of this program.” Jeanne Kojis, executive director of Nonprofit Network SW Washington and a board member of the Giving Circle adds, “The Kids Care Club is in some ways a mirror of the Giving Circle. Both are about connecting caring people to a community issue in a way that invites them to be part of the solution. Both the Kids Care Club and the Giving Circle believe that kids can “take a simple step forward, and you can make a difference.” Kojis continues, “Giving Circle members know from our own experience that the difference made is not just about the cause but often taking those simple actions makes a difference in ourselves. Being able to help support that opportunity for kids was a wonderful opportunity for us.” The Autism Serves Kids Care Club kicked off in October 2015 with 17 youth members and peer mentors participating. Since its inception, the group has had 27 youth members log a whopping 711 volunteer hours. Themes promoted in the first month included Peace & Kindness and Bullying Prevention. With each month Continued on next page

Children with all abilities are given the chance to volunteer and give back to the community

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through the Kids Care Club.

Volunteer, continued from page 26 having a new theme, kids were able to learn about a variety of topics and social issues such as disability acceptance and advocacy, hunger, homelessness, literacy, poverty, environment and animal welfare. A few of the supports used in activities to help youth participate include noise-cancelling headphones, Time Timer® clocks, visual schedules and fidgets. There are both “classroom” volunteer activities and service education, completed during club time in multiple rooms giving youth plenty of space to spread out and reduce sensory overload. There are also projects out in the community. “As this is our first service season and a pilot program, we regularly evaluate our model and encourage feedback from youth and parent participants,” Krejcha adds. “At our May 2016 meeting, we asked Kids Care Club members

Few opportunities exist that give those with ASD a meaningful and consistent way to volunteer independently, alongside family and friends.

to choose their favorite activities from throughout our first season. We learned that physical activities out in the community were hands-down the favorite things to do. They’ve also gotten the most participation. Based on that feedback, we are adjusting the second season of our program to bring back kids’ favorite volunteer activities as well as add new ones.” One of the most popular service projects pertained to alleviating hunger. The first activity entailed folding grocery bags with other volunteer groups in the community. The second part included youth and families going door-to-door to collect food during the annual Clark County Walk & Knock for local food banks. Eleven-year-old Kaliq shared, “I liked folding bags at the food bank for Walk & Knock. It was fun to be around all the people working hard and to be a ‘bag runner’.” His nine-year-old sister, Asjia, a peer mentor, says, “I loved Walk & Knock. It was awesome being outside, collecting food for others, and getting to know the kids from our club better.” Another popular service project was when the group was able to go to the Clark County Food Bank. During this trip, they were able to partner indirectly with the Humane Society by helping to repackage donated pet food. Twelveyear-old Sophie, who travels each month to Kids Care

Club from Portland, really liked this outing, and it made an impact on her, “I liked the food bank. Animals need help, too. I like helping animals.” Imani, peer mentor and older sister to Kaliq and Asjia also had fun. “I enjoyed helping with the pet food redistribution at the food bank. We got to be part of a physical activity, meet new families, and help pets all at the same time!” Fortunately, the seed money support of the Giving Circle was a wise investment. Nonprofits and businesses throughout the community and the country are recognizing the work that the Kids Care Club is doing and want to keep it going. “We are excited to announce that we’ve already received funding for our second service season from numerous partners, including a generous $2,500 donation from Umpqua Bank, and multiple gifts of funding and in-kind support from Walmart,” Krejcha says. In addition to local support, Kids Care Club recently received a $6,500 NobleCause grant. The NobleCause grants, organized by NobleHour.com, were made possible by an anonymous donor within the GiveWell Community Foundation, which serves Polk County, Florida. “We’re excited that our pilot program in Clark County will have nationwide reach!” The service performed by Autism Serves Kids Care Club members and their families at monthly club meetings, as well as out in the community has a positive ripple effect. Not only are kids and their parents becoming more engaged in the community through service, but recipients of volunteer efforts and local nonprofit organizations are also learning more about autism and how to better accommodate children, teens, adults and families within their programs. It’s a total win situation for all involved. When asked why he liked being a member of Autism Serves Kids Care Club, ten-year-old, Ryan Krejcha says, “I like helping other people in the community because it makes me feel happy inside, and it spreads God’s love.” The club also builds a more inclusive community. The Autism Serves Kids Care Club program dispels myths that people on the autism spectrum are a burden on society and should be in segregated programs. Once people see youth volunteering, stereotypes are shattered. Not only are kids of all abilities doing a fabulous job volunteering and serving alongside others, but they are positively changing the way that people in the world view them. Working together, our world is stronger! The next season of Autism Serves Kids Care Club starts in September 2016. To get more information about how your family can participate or start a club in your area, visit autismempowerment.org or email kidscareclub@ autismempowerment.org for details.

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

IN THIS SECTION Winning the war on grooming.................................................... 29 Understanding Social Communication Disorder............... 32

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Winning the war on grooming Putting healthy habits in place

By Shannon Flynn

Do you feel like you’re going into battle every time you remind your teen that it’s, yet again, time to take a shower? Do you cringe just thinking about the confrontation that will come when you ask them, again, to brush their teeth? You’re not alone. Grooming is one of the daily struggles faced by many parents of children with autism. It becomes a new challenge during the teen years, a time when you want to encourage independence in many areas of their life, including grooming. Whether you’re facing outright opposition or something more like apathy, here are some tips and tricks that can help you win the war on grooming. Identifying the Reasons Your teen’s struggle with grooming can stem from sensory issues and/or difficulty understanding social cues. The first step in helping your teen improve their hygiene is to figure out why they’re having problems with grooming in the first place. Some teens might avoid grooming because they don’t like the sensory sensations associated with it. Think about it. Water splashing, strongly scented products, a toothbrush in the mouth or a razor on the skill can be assaulting to his or her senses and cause sensory overload. Other teens might not understand or care about the social pressure to look groomed. Teens with autism have trouble reading and understanding social cues, so they might not understand that they need to groom to fit in. Be Sensitive to Sensory Issues If you think that sensory issues are the culprit, the most important thing you can do is be understanding and empathetic. “Our kids [with autism] have some sensory differences,” says Dr. Erin Moran, clinical psychologist with the Portland Autism Center. Their sensory issues are real and can be overwhelming. A person with autism has a nervous system that’s on high alert, so their brain has trouble interpreting sensory input. Some people might struggle with touch, while others struggle with sounds or scents. Your first step is to talk to your teen and determine what is bothering them. Determining what is a sensory sensitivity can help the process of finding solutions. If your teen says that they don’t like the splashing water in the shower, there are several accommodations such as

a hand-held showerhead or wearing goggles. Taking baths instead of showers can also avoid a fear or sensitivity to water splashing. Baths can also be a good solution if your teen feels unstable standing in the shower. Some people with autism have problems with vestibular system functioning, which can cause balance problems. Adaptive shower chairs can also help if balance is a problem and your teen. Maybe your teen tells you that they don’t like how their grooming products smell or feel. This is an issue that can be remedied by letting your teen pick out products they like. For example, your teen might try a mild-flavored toothpaste and unscented stick deodorant, or what Dr. Moran calls “the least punishing” products. Understand Struggles with Social Cues If your teen’s grooming difficulties stem from trouble understanding social cues, help facilitate understanding social norms. “They just don’t notice what other people notice,” says Dr. John Green, founder of the Evergreen Center in Oregon City. Explaining to teens that their bodies are changing and with that comes new responsibilities to keep up on body odor, messy hair and bad breath. You might also consider finding a social skills group for your teen. This can help them understand subtle non-verbal cues and, in turn, understand when people aren’t satisfied with their level of grooming. “There should be no shame in asking for help to create a village for your child,” Dr. Moran adds. Set Expectations but Be Flexible Regardless of why your teen is struggling with grooming, it’s important to set expectations and use either a token or reward system to help meet grooming goals. For example, explain to your teen that you don’t want them to smell bad, so you expect them to take a shower every day and they can’t play video games until they do. Understanding the rules and being clear about consequences and expectations are important—even if they need to be explained several times. Flexibility is also very important. Decide ahead of time what grooming tasks are negotiable and non-negotiable with your teen. You might decide that your teen must brush his or her teeth twice a day, but washing hair every other day is okay. Picking your battles will be a foundational principle in winning the war on grooming. www.spectrumsmagazine.org

HEALTH + WELLNESS

Social Communication Disorder Understanding the diagnosis

By Jeff Rindskopf

Cynthia Ganley’s son Isaac was an early talker, until he reached 15 months of age. Then, his ability to communicate simply disappeared. He was confused and stared off into space almost constantly. He would use a single noise to mean many things. Ganley and her husband had no idea what was happening. “Our pediatrician at the time was completely dismissive of our concerns,” she said, “going so far as to accuse us of spoiling Isaac and having a ‘strange family dynamic.’” It was pure coincidence, then, that a friend recognized the symptoms and recommended that Ganley take her son to see an autism specialist in the Portland area. Isaac was diagnosed with autism spectrum disorder (ASD). But he didn’t just have ASD—he had social communication disorder (SCD), otherwise known as pragmatic language impairment (PLI). “The speech pathologist who evaluated and diagnosed our little boy with SCD was visibly affected by his inability to understand most of what she said,” Ganley said.

On the one hand,

Symptoms of SCD are mostly limited to communicational difficulties, including trouble initiating or sustaining conversations, difficulty comprehending nonliteral language and inability to change communication styles based on context. When speaking with a teacher, for example, a child with SCD might speak in the same casual tone he or she would address a good friend without realizing the issue. “The ASD diagnosis has more specific diagnostic criteria,” said Danielle Owen, a clinic director at LanguageCraft. To be diagnosed with ASD, she explained, a child might have the same “persistent deficits in social communication and social interaction” associated with SCD, but they must also exhibit repetitive behavioral patterns, fixated interests and an overor under-sensitivity to people can think sensory input.

you’re just rude or that it’s a cultural problem, and not even consider attributing it to any sort of disorder.

At the time of Isaac’s diagnosis, however, there was no such thing as SCD. It was instead known as pragmatic disorder, and later as semantic pragmatic disorder. SCD is a new diagnosis, introduced only recently in the DSM-5, the latest incarnation of the Diagnostic and Statistical Manual of Mental Disorders published in 2013. “I actually love the idea of gleaning out SCD and treating it as its own thing,” Ganley said of the recent DSM update, “especially if it’s not accompanied by any of the other traditional symptoms of autism.” The newly-named condition is closely related to ASD. Occasionally, it may be diagnosed in tandem with nonautistic disabilities like attention deficit hyperactivity disorder (ADHD). Many children, like Isaac, are diagnosed as autistic with a secondary diagnosis of SCD. Lucas Steuber, CEO of Portland-based pediatric clinic LanguageCraft, admitted the distinctions can be confusing. “I’ve only encountered probably four or five situations related to it,” said Steuber. “In all of those cases, I had to

explain to my office staff what was happening.”

As a secondary diagnosis, these symptoms may seem relatively mild beside those of ASD, but for Ganley and her son Isaac, the issues associated more with SCD are pivotal.

“Right now, language and social communication issues are top priorities, because he’s in high school,” she said, “navigating teenage terrain and subtext, attempting to meet and enjoy the company of peers. It’s a lot.” For Isaac, social anxieties associated with SCD amplify symptoms of autism like impulsivity and vocal tics. Though Isaac is motivated to make friends, he simply can’t grasp the nuances of social communication that help develop healthy peer relationships. Occasionally, a child may be diagnosed with SCD alone. In some sense, these children have a distinct leg-up on more heavily-impacted children with ASD. The disorders share many symptoms, but those with SCD, by definition, lack symptoms of restrictive, repetitive patterns of behavior or thought—often the most difficult of behavioral issues associated with ASD. However, Steuber sees this fundamental difference between the diseases as a sort of double-edged sword. Continued on next page

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SCD, continued from page 30 “I think a lot about visible and invisible disabilities,” he explained. “A woman who had a brain injury recently told me she wished she was in a wheelchair. Because then people would look at her and understand something was up. I think that’s also true with pragmatics.” Similarly, milder forms of SCD might seem invisible to the untrained eye. Steuber worries how easily the symptoms might be misconstrued. “On the one hand, people can think you’re just rude or that it’s a cultural problem, and not even consider attributing it to any sort of disorder,” Steuber said. “Then the flipside is that they’ll assume someone is autistic.” Such considerations beg a larger, omnipresent question in the field of mental health, particularly regarding new diagnoses. Will SCD be over- or underdiagnosed? “I don’t think it will be either,” Owen said. “I think that we will find that children who would otherwise have been diagnosed with ASD will receive an SCD diagnosis, so the rate of diagnosis will shift, but not change.” Ganley, however, believes that SCD almost certainly under-diagnosed, or else simply misdiagnosed, given its overlap with other developmental disorders and its recent inclusion in the DSM. “That whole notion of over-diagnosis of stuff like this really chaps my hide,” she said. With a condition like SCD, still in its proverbial infancy, it’s hard to know how its diagnosis might change in the coming years, or when the next version or revision of the DSM is published. Whatever changes, treatment is what counts for both parents and clinicians alike. For the rare child diagnosed with SCD but not autism, treatment is still lacking. “To my knowledge, I’m not familiar with a program geared directly toward SCD,” Steuber said. There are, however, a lot of curriculums geared towards children like Isaac, treating pragmatic problems as a secondary characteristic of other disorders and helping them to overcome their social difficulties. Steuber recommends the admittedly outdated Social Thinking program devised by Michelle Garcia Winner. Whatever the curriculum, however, Steuber and Owen tend to agree on the best course of action when treating a child no matter the diagnosis. Often, Steuber admitted, he prefers to treat the children in his classes without knowing their diagnoses. Owen, who has yet to encounter a child diagnosed with SCD but not ASD, said that, in such a case, she would do the same thing she does with other children— treat the child, not the diagnosis. “We do need to limit our technical terminology,” Ganley said, “and cut to the chase of what it’s like for our kids to have this, and how necessary it is for them to have allies.” Isaac is moderately verbal now. Though he has enormous difficulties speaking, he understands the vast majority of what others say to him, so long as it’s devoid of abstractions or sarcasm. Ganley and the rest of her family learn to work around these issues, rephrasing questions, minimizing word use and speaking as clearly as possible. They help Isaac do the best he can, and they’ll continue to do so, no matter his diagnosis.

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HEALTH + WELLNESS

STORIES from the SPECTRUM Autism from an Autistic perspective

By Karen Krejcha

Faking it. Have you ever heard the expression, “Fake it ’til you make it?” The idea behind this catchphrase is to imitate confidence or positivity when you’re not feeling it, with the hope that by practicing this long enough, you actually will start feeling confident or positive.

It scared the heck out of me, but when I was called to found Autism Empowerment in 2011, I realized I would need to be regularly in the public eye. From my perspective, God began putting me in places and situations where I would have conversations with people from all walks of life, all ranges of the autism spectrum. Anxiety would creep in, and I’d want to run away screaming and crawl into bed with a weighted blanket. I did my best to pray and persevere, and gradually it became easier. Not always. Not easy. Easier.

As a human being, when I am seeking relationships, I desire conversation with those who are authentic, loyal and honest. The thought that I might be faking it by not letting others see the real me seems disingenuous and hypocritical… and yet… I’ll let you in on a confession. For To those adults on the spectrum who are reading this, your almost all of my teenage years and much of my adult experience and mine will undoubtedly vary. My advice to life, I have gone into social those who feel they may be situations feeling like I was “faking it” by trying to wear a an actor in a play, watching mask of “normalcy” when they myself from outside my body feel anything but typical is this: Accept yourself for who you are, as I wore a mask that hid my true self. As an autistic Be kind to yourself. There may where you are at in this season in woman who wasn’t diagnosed be times when “fake it ’til you on the autism spectrum until make it” seems to work in the your life. That doesn’t mean in my 40s, I spent many years short term. Plan strategies incognito. coping for the instances stagnation. We all are lifelong learners. for where you’ll need to make Although I wanted small talk and participate in to be authentic in my social niceties. When you communication and let out know you’re going to be in the real me (if I even understood who that was), unless an extended social or work situation which may trigger I was with people I felt extremely comfortable talking anxiety and sensory challenges, bring along something that with, I found it difficult to have a rich and meaningful may help you self-regulate (e.g. gum, fidget, notebook, stress conversation. Small talk was a means to an end, a social ball) and give yourself time to decompress afterward. nicety that was expected, yet never appealed to me. I either stayed quiet or regurgitated what over the years In the long term, the practice of being good to yourself had appeared to become patterns of programmed social and true to your strengths and challenges will come more responses, “social scripts” of sorts. I didn’t think people naturally. As a bonus, the relationships you develop along would “get” me and believed that if people knew the “real” the way will often feel more authentic. me, they wouldn’t like me or accept me for who I was. When I was a teenager and young adult, I never felt good Here are a few other thoughts to consider: enough for society. Accept yourself for who you are, where you are at in 1 this season of your life. That doesn’t mean stagnation. The thought that I wasn’t true to myself bothered me. I tried to avoid social situations as much as possible unless We all are lifelong learners. We all have strengths they involved my special interests. I’ll admit that I was a and gifts. We all have weaknesses and flaws. That’s part of pretty darn good actress socially, but the only acting I was being human. interested in was on stage. Trying to be someone you’re not for hours on end in real life is e-x-h-a-u-s-t-i-n-g. Embrace your inner underdog. People like rooting for 2 the underdog. Although there will be times in your I wanted to change but was scared, confused and life where things are not easy, you can take comfort uncomfortable. Then life threw me a curveball, and it in knowing that through perseverance comes strength. was up to me to hit. After I learned in 2008 that both of When you succeed despite adversity, it is easier to be more my children were on the autism spectrum, and then I appreciative of what you have accomplished. was diagnosed autistic as well, I realized that for all our sakes, I needed to be true to myself and try to live the most Practice an attitude of gratitude. If you’re in a social 3 situation where you’re uncomfortable, take your authentic life possible. mind off your anxiety by focusing on performing an

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Stories, continued from page 32 act of kindness for someone else. Consider volunteering for an organization like Autism Empowerment.

Strengthen your faith. For me, this included praying for guidance and strength and the ability to know myself the way God sees me.

Forgive yourself. We often feel bad about the mask we wear when faking it or trying to “fit in.” We may worry how others see us. We may be told by parents, teachers, co-workers, therapists, friends and relatives that we need to “act” a certain way and be “more like this” and “less like that” in order to be liked, loved, get a promotion, be invited to a birthday party, etc.

The more we have been told to change to fit in, the more we have internalized the message that something is wrong with us. In the process, our self-esteem is often damaged. To please others and not draw unwanted attention to ourselves, we may wear the mask of “normalcy” even though it is never a good fit. We may have worn so many masks over the years that when we do finally look into the mirror and assess who we are, we’re not sure. Forgive yourself and get to know the amazing person that you are meant to be. An adapted version of this article by Karen Krejcha was originally published as an Aspie Mentor essay for Been There. Done That. TRY THIS! An Aspie’s Guide to Life on Earth (Jessica Kingsley Publishers, 2014) and An Aspie’s Guide to Faking It (Jessica Kingsley Publishers, 2015).

PHAME, continued from page 21 important part of the Portland community over the last three decades. “We have a big vision,” Beaudoin adds. “We want to see a community that champions opportunity and possibility for all artists. It takes a big community of champions to realize that vision. Whether through volunteering, serving on the board, donating time or talent to the organization, there are so many ways to get involved. PHAME brings passion, joy and celebration to arts education and performance.”

UPCOMING PERFORMANCES

For more information, visit www.phamepdx.org.

Thursday, June 23 Tony Starlight and PHAME

Thursday, June 23 8:00 pm Tony Starlight Showroom 1125 SE Madison Street, Portland Doors open 7:30 p.m. July 16-17 The Wizard of Oz St. Mary’s Academy Mainstage 1615 SW 5th Avenue, Portland

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therapy THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Lukeâ&#x20AC;&#x2122;s Ride........................................................................................................... 35 Partner provider directory........................................................................ 36

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Bike ride raises therapy funds Luke’s Journey to fund grants for families

By Karen Krejcha

Families in the autism community face a daunting task when it comes to choosing therapy to help their children on the spectrum thrive. Because each person is unique and the characteristics of autism present at different levels of severity in each person, there is no one-size-fits-all support strategy that works for everyone. As a result, parents often experiment with a variety of options and interventions. It can become incredibly expensive and waiting lists are often long, both for families with state-supported and private insurance. Like so many children on the spectrum, 11-year-old Luke has had struggles with sensory issues, awareness, communication, social situations and anxiety. He was diagnosed with severe autism at an early age and is currently nonverbal. Although on a strict diet, he’s also had a lot of stomach issues that have caused him a lot of pain. Fortunately, Luke has a tremendous team of educators, therapists and medical professionals that have made a major impact on his development.

Doug wanted to make a difference. He approached Autism Empowerment in March with the vision of creating a special grant fund specifically to help local families with children on the spectrum to gain better access to needed services that may be financially out of their reach. Inspired by his son, the fund was named Luke’s Journey and depending on the amount of funds raised, eligible families can apply for grants of up to $1,000. Luke’s Journey Fund launched on March 3, 2016 in celebration of Luke’s 11th birthday. Since that time through word-of-mouth and contributions from Autism Empowerment’s Strike It Up for Autism Acceptance BowlA-Thon, the fund has already raised $1,275, a great start considering there had been little publicity.

“As his dad, of course I’m biased, but I can honestly tell you that he’s the sweetest little boy in the world. He’s very happy and always smiling. He’s very social and engaging and he loves to please people. It has been amazing to watch how far he has come.”

The obvious question became how to raise a large amount of money so that as many families as possible could be served when the grant applications opened in Fall 2016. What kind of kick-off could be done that would be so big, so awesome and so inspiring that individuals, families and corporations would eagerly want to take part in the movement and donate to the cause?

But there have been costs.

The answer? Luke’s Ride 2016!

“I was recently surprised with a $600 bill for medical and therapy expenses related to my son’s autism treatments,” Underwood says. “I hadn’t expected or planned for this particular expense, but luckily I had the means to. I’m fortunate to have a good job and good insurance and can usually handle the unexpected.”

“Luke’s Ride will be using the popular STP (Seattle to Portland) bike event as a means to raise funds and awareness for Luke’s Journey Fund,” Underwood says. “STP is an annual bike event that starts in Seattle and ends in Portland. There are about 10,000 riders from all over the world. The vast majority ride the 206 miles in two days, camping along the way. Luke’s Ride will be a small group of us attempting STP in one day.”

His dad, Doug Underwood, is a very proud father.

Underwood realized that many families may not be as financially fortunate and such a large unexpected expense could be crippling to some. “There are so many helpful therapies and treatments for our kids on the spectrum that are either not covered by insurance or have limitations on the number of visits,” Underwood says. “What kind of tough choices are families having to make because of this? What if they don’t even have insurance? I hate the thought that some of these kids aren’t receiving all the help available due to lack of coverage or finances.”

He confessed, “I’m guessing that this will be the most physically and mentally challenging day of my life, and I joke that it may be the very last day of my life, too—but certainly the most rewarding. Hopefully, there’s no shame in crossing the finish line by ambulance.” For such a worthy cause, Underwood isn’t one to think small. “I’ve been thinking about the autism community and how I can give back for a long time now. Earlier this year it hit me that I was turning 50 on July 17th and that the annual STP bike event was scheduled for the same time.” Continued on page 38 www.spectrumsmagazine.org