FREE
SpectrumLife OREGON and WASHINGTON’S PREMIER MAGAZINE FOR AUTISM COMMUNITIES TM
m a g a z i n e
10 YEARS OF AUTISM EMPOWERMENT! 10 YEARS OF JOEL SUZUKI SALMON CREEK TOPSOCCER REJECTION SENSITIVE DYSPHORIA TRANSITIONING TO IN-PERSON LEARNING HISPANIC DISABILITY SUPPORT (PASITOS GIGANTES)
SUMMER 2021
SUMMER 2021
contents Accept
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Enrich
Inspire
Empower
10 Years of Autism Empowerment!
FEATURED SECTIONS
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From the Publisher Spectrum Life Magazine celebrates 5 years with Autism Empowerment.
ADVOCACY
8 10
Hispanic Disability Support Pasitos Gigantes - Giant Little Steps. How to Figure Out if An Autistic Needs Fixing Spoiler Alert: They Don’t.
LIFESPAN
13 14
Double Take Stories from the Spectrum: Karen Krejcha. 10 Years of Autism Empowerment Reflecting on the past. Hoping for the future.
Recreation
21 26
Salmon Creek TOPSoccer The magic is in the soccer ball. 10 Years of Joel Suzuki A retrospective from Brian Tashima.
EDUCATION
29 32 34
Lessons Learned from COVID-19 Learning must be humanized. Equity is essential. Transitioning to In-Person Learning Practicing and preparing for the unknown. One-to-One Support in the Classroom The who, what, when, why and how of one-to-one aides.
HEALTH + WELLNESS
37 40
Ask Spectrum Life Thank you for investing in autistic potential. Starting A Healthy Fitness Routine Let’s get moving!
therapy
44 46
Rejection Sensitive Dysphoria When being rejected really hurts.
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Upcoming Autism Empowerment Events Podcasts, Enrichment, Support.
Spectrum Life Resource Directory Spectrum Life Magazine online helps you find autism-friendly service providers.
www.spectrumlife.org
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FROM THE PUBLISHER
SpectrumLife TM
m a g a z i n e
SUMMER 2021 | VOLUME 10, ISSUE 3 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer
This issue marks two exciting milestones for Autism Empowerment. We celebrate our 10th anniversary of nonprofit service on June 3rd, 2021. We also celebrate our 5th anniversary as publisher and creator of Spectrum Life Magazine. As awesome as it would be to have an in-person celebration, we’re not yet at that point. We are hoping for some kind of 10-year party by the end of 2021. In the meantime, we thought it would be fun to take a look back over the years at highlights and special events. See 10 Years of Autism Empowerment (page 14) and Ask Spectrum Life (page 37). Our journey has reconfirmed many things. Words matter. Actions matter. The way we talk about autism and being autistic matters. When we can reframe conversations and change the way people talk, it can change the way they think, which ultimately impacts how they act. Positive words often inspire positive action. Our four foundational pillars of Accept, Enrich, Inspire and Empower are positive words. Amplifying important voices is what we do. In this issue, we shine a light on Spanish-speaking and autistic voices with Hispanic Disability Support (page 8), How to Figure Out if An Autistic Needs Fixing (page 10), and the inspirational poem, Double Take (page 13). We are thankful for the altruistic people and groups we’ve grown up alongside. Three of those are Julie Borghello: Salmon Creek TOPSoccer (page 21), Brian Tashima: 10 Years of Joel Suzuki (page 26), and Ryan Lockard: Starting A Healthy Fitness Routine (page 40). We are also grateful that society is starting to open up. Lessons Learned from COVID-19 (page 29) and Transitioning to In-Person Learning (page 32) will help us in the process. We can also better understand our loved ones with Rejection Sensitive Dysphoria (page 44). Thank you for spending time with us these past 10 years! We look forward to what the future holds. Wherever you identify in your autism or autistic journey, we are here to meet you along the way with acceptance, enrichment, inspiration, and empowerment for the road ahead.
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™
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www.spectrumlife.org www.spectrumsmagazine.org
Editorial Advisory Board: Amy Donaldson, Ph.D., CCC-SLP Laurie Drapela, Ph.D John Krejcha Tara O’Gorman, MSW Heather Parrott Brian Tashima Mailing address: Autism Empowerment P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org spectrumlife@autismempowerment.org Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within Autism, Autistic and Asperger communities. 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 SpectrumLife.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. © 2021 All rights reserved.
ON OUR COVER
Gabriela Ewing enjoys time with her son Logan and their dog. See Hispanic Disability Support (Pasitos Gigantes) on page 8
Photo courtesy of Gabriela Ewing
Welcome to the Summer 2021 edition of Spectrum Life Magazine!
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advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
IN THIS SECTION Hispanic Disability Support..............................................................................8 How to Figure Out if An Autistic Needs Fixing ...................................... 10
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Free Resources... for Parents and Caregivers of Children with Autism from Seattle Children’s Autism Center
The world of autism spectrum disorders is constantly changing and we at Seattle Children’s Autism Center are eager to share with parents and caregivers the latest therapies, research, news and tips for families.
1. The Autism Blog
theautismblog.seattlechildrens.org We provide information that may be helpful for raising a child with autism. Posts are written by staff including physicians, nurses, and psychologists who are knowledgeable about the diagnosis and latest in treatments and therapies. Parents and guardians also offer their perspective and share stories as guest contributors. Topics range from young adult transition to sibling support to new research findings to our perspective on the latest news and information about autism.
2. Autism 101
Available in-person at Seattle Children’s or by live-streaming. Autism 101 is a 90-minute presentation providing information and support for parents and families of children recently diagnosed with an autism spectrum disorder (ASD). Topics include up-to-date, evidence-based information about ASD, behaviors associated with autism, autism prevalence, treatments available and resources for families.
3. Autism 200 Series Available in-person at Seattle Children’s or by live-streaming. Watch past lectures on our website or YouTube®. Autism 200 is a series of 90-minute classes for parents and caregivers of children with autism who wish to better understand autism spectrum disorder. Classes are taught by faculty from Seattle Children’s and the University of Washington and other community providers. Topics include transition to adulthood, early intervention and school support. Each class includes time for questions.
Learn more or register at seattlechildrens.org/autism or by calling 206-987-8080.
www.spectrumlife.org
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ADVOCACY
Hispanic Disability Support Pasitos Gigantes - Giant Little Steps
By John Krejcha Individuals and families identifying within autism and disability communities have been facing ableism, oppression and accessibility challenges for many years. Despite disability intersecting all races and ethnicities, access to services and supports is far from equitable. The reasons are complex and varied as disability is also looked at through a different lens within different cultural groups. To learn more about current needs and challenges within Hispanic and Latino communities, Spectrum Life Magazine recently connected with long-time disability advocate Gabriela Ewing, Executive Director of Hispanic Disability Support Southwest Washington (Pasitos Gigantes). Hello Gabriela! Please tell our readers about the origin of your organization. Pasitos Gigantes started under another nonprofit organization as a support group for Spanish speaking parents with children with special health needs. We transitioned and have been self-standing for almost four years now. We are now Hispanic Disability Support SWWA (Pasitos Gigantes). What does Pasitos Gigantes mean and why was the name chosen? The meaning of Pasitos Gigantes is Giant Little Steps. The name was chosen by the group members back in early 2014. Hispanic Disability Support SWWA (Pasitos Gigantes) is a perfect expression of what we do. Talk to us about some of the cultural challenges that Spanish speaking families who have children with disabilities face. Discrimination, language, access to services, and ableism are the biggest challenges that we see in our community. Many families also are unaware of the help that is available for them as well as facing fear and a lack of trust in the people and processes that can help them. We fight hard to ensure that no children fall through the cracks for any of the above reasons. What type of services does Hispanic Disability Support offer? We offer support to those who need help to navigate state and federal services, and advocacy at different levels. With the COVID-19 pandemic, we’ve been able to provide relief funds to our Hispanic/Latinx Intellectual and Developmental Disabilities (IDD) community as well as support in collaboration with other nonprofit organizations locally and around the state of Washington to bring resources to our greatly impacted COVID community members.
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How has COVID-19 changed the way that Hispanic Disability Support has provided its services? COVID-19 put a magnifying glass on our Latinx/Hispanic community because we were hit with great disparity and to this day, we continue to have families negatively impacted by this virus. We transitioned from meeting in person to having meetings 1:1 and in group via Zoom. Our community membership has grown so much that we had to do some adjustments to be able to support everyone in a meaningful way. When the pandemic first really hit hard, we physically shopped for needed supplies for our families. We purchased staple hard to find items in bulk, such as hand sanitizer, toilet paper, beans, rice, corn tortillas and various canned foods. We took from our own personal pantry to help others and we delivered to their homes so they could stay safe away from exposure. We have shifted gears in every way to keep promoting and protecting those in our community who need us. Do you have a personal connection to someone on the autism spectrum or with other disabilities? My youngest son was diagnosed with Autism Spectrum Disorder (ASD) when he was about 2 years, 8 months old. My son’s diagnosis was severe and we felt like the entire world was tumbling down atop of our family. It’s extremely hard for parents to manage a diagnosis like this after a panel of medical doctors tell you after extensive testing, that your child has this syndrome and that he will never talk nor have a normal life. I’m so grateful my husband and I didn’t accept that as a life sentence for our son and we were able to support him as much as we could to this day. We still have a tough road ahead, but now we see the light at the end of the tunnel. For us, it is simple: we will completely support our son. And along the way, we will help others to do the same. Please share a story or two about families you’ve helped support. I love stories like the one when a family was having a hard time getting an inclusive setting for their child in school and we were able to support, advocate and be part of the process to have that inclusion become a reality for the child. Another is a family that was looking for therapy for their daughter and they couldn’t get through the application process due to language inaccessibility and we supported that process for them to obtain services.
Continued on next page www.spectrumsmagazine.org www.spectrumlife.org
Hispanic Disability Support, continued from page 8 I love to see that our families are having a lot of success on different issues. We’ll continue to advocate and support them for the many other challenging issues that haven’t yet been solved. What do you see as the biggest need within Hispanic/ Latinx communities in Southwest Washington? How does that compare to Hispanic/Latinx families parenting children with disabilities? I would say that the biggest need for our Hispanic/Latinx, Black, Indigenous, and People of Color (BIPOC) community is inclusion and equity. We have talked about acceptance for a long time and I think it’s time that we not only talk about inclusion but we practice inclusion and equity regardless of our disability, race, religion, sexual orientation, etc. One fact that often is not understood by society in general is that undocumented families, many with American citizen children with ASD, face many hurdles that could be more easily overcome if they did not need to seek help from within the shadows of society. Hispanic families with children with disabilities are substantially challenged in ways that others are not. Income limitations, health insurance exclusion and two-parent working households shorten the opportunities for children with disabilities and special health needs to receive help due to lack of time, money and insurance. Those are formidable factors that put up barriers to successful integration into the community. Do you collaborate with other Hispanic groups around the region or throughout the country? If so, what has that experience been like?
What is the best way somebody can connect with your organization? Our website is under construction. In the meantime we can be contacted by: Mail: 6511 NE 18th St., Vancouver, WA 98661 Facebook: Pasitos Gigantes (HDS) Email: Gewing007@gmail.com or Phone: 360-241-2280 What are your organization’s future goals? I plan to continue supporting, advocating for and educating our Hispanic/Latinx IDD community and help them grow however that might look for every individual. I will be seeking to expand staff roles along with volunteers to help expand the program. The current need for help in our area of support is growing, as is the population that needs us. Currently, volunteers make up the sum of base support. While I am more than grateful for this help, the need for additional paid positions to anchor us with greater community and financial stability is needed to continue to meet the growing demand and need for our services. What else is important for Spectrum Life Magazine readers to know? I would like to highlight the fact that some families are hurting a lot with the loss of loved ones at the same time that they need to continue the struggles supporting their children with disabilities. We don’t know what difficulties somebody may be going through so our ask is to be nice to each other and lend a hand to those in need. Pay it forward as much as possible. Together we can end inequities, ableism and many other disparities in the systems for our IDD self-advocates and their families.
Together we make a stronger community!
Yes, I collaborate with other Hispanic/Latinx communities at the local, state and national level. I’ve had great experiences collaborating with these organizations because we all fight for the well-being of our BIPOC communities and support each other to succeed. Considering the challenges the families you work with face, what are your biggest advocacy goals? Some of our advocacy goals are equity across IDD systems, closing state disability institutions and bringing the residents of those institutions to live in their communities, amplifying job opportunities for people with IDD, and advocacy for immigration status for our immigrant and refugee communities taking care of children with IDD. What other kinds of organizations or coalitions would you ideally like to partner with? I would like to expand the collaboration with Hispanic/ Latinx and BIPOC organizations that align with the values that support and advocate for our IDD communities. www.spectrumlife.org
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ADVOCACY
How to Figure Out if An Autistic Needs Fixing Spoiler Alert: They don’t. By Judy Endow, MSW, LCSW I have autism. I am autistic. Both these statements describe me, and both are true. However, these two statements are NOT equal. Having autism means I have been diagnosed, based on deficit criteria used by the medical field, with a medically defined disorder called autism. The diagnosis of autism is housed in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), and so it falls under the domain of psychiatric disorders. When autism was first described based on behavior deficits, it was thought to be a psychiatric disorder. We now know differently, but the diagnosis of autism remains housed in the DSM-5. Being autistic means something vastly different. Everyone’s personhood comes to be defined by their way of thinking, being, and interacting in this world. I have an autistic style of thinking, being, and interacting in the world. Thus, my very personhood is autistic. Just like my personhood is white and female, it is also autistic. I am autistic and I have autism. Both apply. Both are true. I do not need to choose only one statement as my truth. People need to understand this. It is not a case of choose your side and fight for your cause. This is important. Problems happen because people do not understand the difference these two statements imply. I have autism. Autism is a disability. Life with autism can be difficult. Because of autism, I need certain supports and accommodations. Having autism means I can ask for these supports and accommodations due to the fact that I have a medically defined entity called autism. I appreciate my diagnosis. I appreciate having autism because this medical label allows me a way to talk about and to get the accommodations and supports I need to live my life. But the medical label of autism does not define my personhood. Problems arise when the diagnostic deficit language of having autism is taken out of the medical realm and used to describe my humanity – the human being I am in this world – a white autistic female. This is who I am. I have autism. The difficulties that come with my autism can be supported and accommodated. I am autistic. It is my place of being in this world. The essence of who I am – all my thoughts, actions, and interactions – is based on who I am as an autistic white woman.
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I wish more people understood the differences between having autism and being autistic. At this point in history, it is assumed having autism and being autistic are one and the same thing. This sort of understanding by the general public and most professionals who deal with autistic people cause us to be treated as if we are only the sum total of our autism deficits rather than as autistic human beings. Here are a few potential illustrations:
Painting Classes If you are autistic and want to learn to paint, and you can sign yourself up for a painting class, this is what you do. However, if your autism poses difficulties, meaning you need to ask a brokered support person to sign you up for painting classes, you will likely wind up being offered Art Therapy.
Piano Lessons If you are autistic and want to learn to play the piano and ask for assistance to find a piano teacher, a brokered support person may offer Music Therapy. If you are neurotypical and want to learn to play the piano, nobody will suggest Music Therapy. Instead, when you ask about piano lessons, you will get referral information about piano teachers.
Making Friends If you are autistic and want to meet people who have similar interests, a social skills or life skills training group is suggested. If you are neurotypical, nobody will think in a million years to give you information about social skills groups. Instead, they will tell you about things like the Saturday Birdwatch Hikers, the Quilting Class at JoAnn Fabrics, or the Open Studio at the Pottery Shop – established groups or classes where participants share one of your interests. Continued on next page
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How to Figure Out if An Autistic Needs Fixing, continued from page 10
Whatever you do, or dream you can, begin it. -Johann Wolfgang von Goethe
19th Annual Autism Walk Sunday, August 15th, 2021 at Oaks Park Fun Starts at 9:00am Walk Starts 10:45am • Rides Open 11:30am
A day of family, fun and community! Photo Booth • Crafts/Sensory Table Quiet Area • Obstacle Course • Cosplay Characters Community Resource Exhibitors • and more! We offer the love, support and compassion to help get you started.
Providing guidance, training & support around disabilities 9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-907-3287, en Español 360-487-0776 www.peacenw.org or email: info@peacenw.org
Some days it is downright impossible to get others to see I am more than my autism diagnosis. In reality, I am an autistic person wanting to enjoy life and learn new things just like any other person. Sometimes I need support or a particular accommodation to make this a reality – not therapy.
At this point in history, because many in society still view having autism and being autistic as the same thing, many autistic people are still assumed in need of fixing – as if having autism is the sum total of our existence. The opportunities people extend to us are based on this notion. No matter how old we get, we are continually segregated into things like Art Therapy, Music Therapy, and social skills groups.
Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving can be purchased at www.judyendow.com.
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lifespan ALL AGES AND ABILITIES
IN THIS SECTION Double Take........................................................................................................... 13 10 Years of Autism Empowerment............................................................ 14
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STORIES from the SPECTRUM Autism from an Autistic perspective
Double Take Made in His image, No mistake. No need for fixing, Double take.
Disability is not invisibility. You are not alone. That’s ableism. Don’t you see? It’s still ingrained In you and me.
Your revision, It’s His provision, That gift He’s given, For those forgiven.
Don’t believe the lies. Saying you’re not enough. The mirror warps us. Saying you’re not enough.
See the beauty Fill the lonely. He’s your wholeness When you feel if only...
Every day you wake, Give yourself a break. You are a masterpiece. So double take.
If only I’d fit Into this world. A broken world With broken hearts And broken parts. False starts, Gluttonous shopping carts,
You were chosen for life. You are enough. You were chosen for good. Each day you wake up.
With people buying Friends and fame, While folks are dying, The guilt, the shame... Faith. Humanity. Calling. Love. Society’s revision. My provision. Your decision.
Made in His image. That’s no mistake. You are accepted. It’s no correction to be made. As you double take, See your beauty. As you double take, Feel your essence. As you double take, Embrace your gifts. Double take.
I wrote this poem in May 2021 and dedicate it to all those who are struggling with insecurity, depression, anxiety, and loneliness. As tough as it may seem right now, please know that you are not alone. You are enough. You are meant to be. Double take. • As an autistic woman, wife, mom of two children on the spectrum, and the Executive Director of Autism Empowerment, there are times I feel anxious, depressed, and broken listening to the needs and pain existing in divided disability communities. Despite the pain of this world, I have hope and faith in a bigger purpose and reason for being. We weren’t meant to live life alone.
Karen Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 28 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.
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LIFESPAN
10 Years of Autism Empowerment Reflecting on the past. Hoping for the future. By Karen and John Krejcha
Wherever you identify in your life journey, Autism Empowerment is here to meet you along the way with acceptance, enrichment, inspiration, and empowerment for the road ahead. We are an autistic and disability-led nonprofit, publisher of Spectrum Life Magazine, and producer of the Autism Empowerment Podcast. Founded in Vancouver, Washington on June 3rd, 2011, Autism Empowerment serves youth, adults, and families in autistic and autism communities in a variety of innovative and impactive ways. Everyone on our Board of Directors and in key leadership roles either identifies as on the autism spectrum or has autistic family members. Having just passed our milestone 10th anniversary on June 3rd, 2021, we wanted to share photos and memories along the way. Writing this article has been a challenge because there has been so much that we could share. We are so grateful to all those who have been part of the Autism Empowerment (AE) journey. It hurts our hearts to leave anyone out. Please know that if you’re reading this, you’re included! We thought we’d do something for print, including as many photos as our amazing graphic designer Dave Born can fit in, and then we’ll have an extended interview later on SpectrumLife.org. We’ll even create space for you to tell YOUR stories of what Autism Empowerment means to you and your loved ones. We’re also doing a special podcast mini-series in July and August 2021 called Behind the Scenes: A Look at 10 Years of Autism Empowerment.
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It has been quite a journey, and it is people like you who have laughed with us, cried with us and volunteered with us as Ambassadors for Acceptance of All Abilities. Together, we have created lifelong memories and used our gifts and strengths to make positive changes in our world. Although we’ve come a long way, this next leg of our journey will be awesome indeed. It’s time for a renewed investment in autistic potential, and you’re invited! Autism Empowerment co-founders John and Karen Krejcha share thoughts on this journey of growth and transformation, learning and community, divisiveness and unity, of calling and passion. Congratulations on Autism Empowerment’s 10th Anniversary! Karen: Thank you! In many ways, Autism Empowerment has been like a third child for us. Our kids have literally grown up alongside so many other children in our community, many of whom are now young adults. We’ve met so many wonderful kids, adults, and families along the way. John: And animals! Cats, dogs, chickens, giant tortoises, alpacas, llamas... Rojo the Llama was one of our most popular Spectrum Life Magazine covers! How old were your children when Autism Empowerment was founded? Karen: Our kids were 5 and 11. That fall, our youngest was starting Kindergarten and our oldest was starting middle school in 6th grade. Both spent most of their time in regular Continued on next page
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10 Years of Autism Empowerment, continued from page 14 classrooms but had pull-outs and specialized services for things like speech, occupational therapy, and social learning. It was quite a transition for everyone. John: We had two kids in two new schools, a new nonprofit, and a full-time online collectibles business we ran separately to pay the bills. Busy times. Karen: Indeed. I know that there were many times over the years when I felt overwhelmed, challenged, and burned out and wondered what on earth was I thinking? Then I remembered it was never about me. It was about a bigger picture and a greater calling. It was my job to be obedient, open-minded, and to learn. It was also about our children. They have been great supporters and volunteers in their own right along the way. We love them so much. A big reason why you founded the organization was so that people in autism and disability communities could have opportunities to positively connect. John: Absolutely. Loneliness, isolation, and feeling misunderstood is a big problem for youth and adults within our community. We wanted to provide opportunities for kids, adults, parents, and families to connect. Karen: That’s true. We also wanted to do it in ways where we were meeting people where they were at as far as comfort level. Social anxiety is a common challenge for many of us who are autistic and it can take a while to warm up to people. We wanted people to know that if they came to one of our activities, groups, or events, that they were in a welcoming, accepting, respectful environment. That brings to mind your colorful Ambassador for Acceptance of All Abilities t-shirts. What’s the story there? John: The shirts serve multiple purposes. They’re in our four foundational colors of green, red, orange, and purple to represent our four foundational pillars of Accept, Enrich, Inspire and Empower. People enjoy picking their favorite colors. Originally, we gave them to volunteers and they were a great way for people attending our events to be able to easily locate someone who could provide support. The messaging on the shirts is very positive and sends a message of love and acceptance. Karen: The symbolism of the globe heart in the middle ties in with the person we have in the middle of Autism Empowerment’s globe logo. The idea we are trying to convey is the sending of love and acceptance through our communities as well as all over the world. We can all be ambassadors for positive change. As John said, originally the shirts were for volunteers, but as we would wear them in the community, they frequently became conversation starters and tools for disability advocacy. Many people would ask how they could get a shirt, so later this year, we plan to produce a limited edition version in celebration of Autism Empowerment’s 10th anniversary and all the incredible people in our community who made this journey possible. Was it difficult starting a nonprofit? John: For me it was exciting! I felt that we were being called
to do something to make a difference and leave our broken world a bit less broken — making a change that will bring more good and light into this world. Karen has always tried to shine a light on others. It is important to be that light on the hill, a beacon of hope and a place others can let their light shine. Karen: Starting? No. Running one and getting people to take you seriously? Yes! We have fortunately been blessed to cross paths with many amazing board members and volunteers. So many people have been there with us since the beginning. Others joined in along the way. I’m sure we’ll meet many more in the future! What is it like working together? John: Aside from living together for 30 years, we’ve worked together for over 22. We may come from different places neurologically but we have a lot of shared interests and life priorities. Karen and I are so different in terms of personality traits. Where I’m extroverted and draw energy from social situations, she’s more introverted and retrospective. She can come across as bubbly and exuberant, but she needs time to decompress and recharge once her battery drains. Karen: John enjoys social activities and exhibiting. He’s in his element and people enjoy his charm, wit and desire to wear shorts in any weather condition. I love people but in small doses. I also enjoy cozy PJs and books. For the first six or seven years of AE, I would try to make it out to as many events and activities as possible. Although I did my best to put myself out there and get to know kids, adults and families in our community, I realized that I could help people more effectively with less burnout if my personal focus was more behind the scenes creating and promoting content, like with the magazine or the podcast. What are some of the differences between Autism Empowerment’s early days and now? John: At the start, there was a learning curve. Learning systems and how they worked (and didn’t work), learning nonprofit rules and norms and moving from a for-profit mindset to a nonprofit model. Learning about ableism, the different models of disability and how divided many within the disability and autism communities are. Karen likes to say we are lifelong learners; this is so true. I continue to learn all of the time. Now for me, it is about creating information for people and empowering them that way. We like to say Content + Community = Connection. Karen: In the beginning, John and I participated in a lot of trainings, seminars and conferences. We would often teach together and then we’d be asked to present to businesses and groups and other nonprofits. The need was great, but it would take up a lot of time and we’d repeat many similar concepts. Now we can create evergreen content for larger audiences through writing and podcasting together. We were happy to bring the podcast back this year. Continued on page 16 www.spectrumlife.org
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10 Years of Autism Empowerment, continued from page 15 What about other volunteers? What is that structure like? Karen: This is the kind of stuff that a lot of people don’t know. Behind the scenes in day-to-day operations, it’s just John and me, and it has been that way almost the whole time. For many years, it was all volunteer. We handle the emails, the website design, the updates, the fundraising, the program design, resource referrals, the social media, the marketing, the accounting, the operations... John: I get all the phone calls. Karen: (laughs) Yes! I always love when someone will email one of us saying they talked with me on the phone because chances are… they’re wrong. John: I’d say 99.9% wrong. Now that being said, we do have many great volunteers who help out with program implementation. Karen is talking about the daily operations. When it comes to things out in the community like the social clubs, support groups, Autism Serves Kids Care Club and special events, we have a lot of volunteers who join in with us at that time who help things run smoothly. Karen: That’s true. Our volunteers rock! Even though John and I are very passionate and are often seen as “faces” of the organization, we always tell people that Autism Empowerment is not about us, the “little” us. It’s about the BIG us, all of us, every single person who identifies in and is an ally to autism and autistic communities. We also cannot forget our very generous, kind-hearted and loyal Autism Empowerment Board of Directors who volunteer their time as well. There have been many that John and I have served with over the years. Special love goes to current and past Board of Directors: Gary Borghello, Andy Humber, Jodie Kotrlik, Tara O’Gorman, Chris Parrott, Paul Pitsenbarger, Peggy Pitsenbarger, Brian Tashima, Tod Thayer, and Sara Wilber. They and their families have supported us in a multitude of ways! There have also been key program leads who have volunteered in-person and hundreds of others who have also generously stepped in to support them. Special thanks to recent program leaders: Aaron Blackwelder (Parent Support), Jimmy Baldwin (Adult Support, Tween & Teen Social Club), Linda Baugess (Parent Support), Joanna Blanchard (Girls Club), Imani Chapin (Autism Rocks), Brandi Dyment (Girls Group), Andy Humber (Adult Support), Jason Keesee (Parent Support), Loraine & Robert Koenig (AE Library/ Tween & Teen Social Club), Bianca M. (Adult Support), Shasti McLaughlin (AWE, Tween & Teen Social Club), Tara O’Gorman (Tween & Teen Social Club), Chris Parrott (Autism and Scouting), Kay Richardson (Parent Support), Rhiannon Severin (Tween & Teen Social Club), Laura Shook (Tween & Teen Social Club), Lindy Treece (Adult Support), Torin Tashima (Book Club) and Doug Underwood (Luke’s Journey Autism Fund). We’d also be remiss if we didn’t shout out to current and past Spectrum Life graphic designers and Editorial Advisory Board members: Amy Donaldson, Ph.D., CCC-SLP, Dave Born, Laurie
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Drapela, Ph.D, Courtney Freitag, Tara O’Gorman, MSW, Heather Parrott, and Brian Tashima. We are extremely grateful to everyone who has donated money and time to support AE’s programs and special events like: Autism Serves Kids Care Club, AE’s Egg Hunt for Acceptance of All Abilities and Disability Resource Fair (4 years), our Annual Summer Picnic, Jump Nights, Sensory Friendly Movies, exhibiting, conferences and more! Thank you! What are some of the lessons you have learned along the way? John: Early on we were so eager to please everybody, that when somebody would come to us with an idea, we would often jump in and say “yes” when it would have been better to say “no” or “not yet”. Now that we’ve had a number of years of experience in launching different kinds of programs, we want to use that knowledge to help empower people to let their own gifts shine. We have plans for the future where we will help encourage that. Karen: I so agree with John when he says we were “yes” people to everything early on. Unfortunately, there are many challenges with that — money, time and burnout being three. Also, we learned pretty quickly that when you try to please everyone, particularly in divisive communities where people may have diametrically opposing views, you often end up pleasing no one. You can lose a bit of your own passion and drive in the process. Although the COVID-19 pandemic was very difficult for Autism Empowerment, the people we serve, as well as our own family, the shutdown of in-person programs did allow us time to reflect and reassess our priorities. As we are entering a new stage in our personal lives as well as our professional lives, Autism Empowerment is adapting along with us. John: One of the greatest challenges nonprofits have is mission drift. This is getting away from your organization’s original calling or mission. Autism Empowerment has had that over the years as we’d get excited about a new program and mean well but couldn’t sustain it. We are now taking time to make sure we are realigning to our mission and serving in a way that allows us to best utilize the talents and strengths we have been gifted with. Karen: John mentioned that we have plans as an organization to empower others. One of the things we are looking to do in the future is offer social microgrants to people within autism communities who are interested in building their own impact-oriented projects. We will have more about this in our Fall 2021 issue of Spectrum Life Magazine. As we move into our next decade of service, we know it will look different than our past and that’s okay! We’ll embrace it together. Until then, let’s take a visual look at some fun memories of our past and look forward to the memories we will create in the future. Wherever you are in your autism or autistic journey, Autism Empowerment will meet you along the way. Here is a look back over the past 10 years.
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We hope you enjoyed this trip down memory lane. Join us as we continue the conversation and share additional photos in an extended interview at www.SpectrumLife.org. For additional treasured memories, amusing anecdotes and plans for the future, check out our upcoming podcast series: Behind the Scenes: A Look at 10 Years of Autism Empowerment at www.AutismEmpowermentPodcast.org.
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recreation INCLUSIVE WAYS TO HAVE FUN
IN THIS SECTION Salmon Creek TOPSoccer.....................................................................21 10 Years of Joel Suzuki ........................................................................26
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RECREATION
Salmon Creek TOPSoccer The magic is in the soccer ball. By John Krejcha The Outreach Program for Soccer (TOPSoccer) is a national US Youth Soccer program that is community-based. As a training program for athletes with intellectual, emotional, and physical disabilities, TOPSoccer strives to provide soccer opportunities for players to develop at their own pace in a safe, fun, supportive and inclusive environment. Salmon Creek TOPSoccer is based in the Vancouver, Washington area and has been running its regionally and nationally award-winning program for over nine years. Spectrum Life Magazine recently connected with Julie Borghello, Salmon Creek TOPSoccer Program Director and Administrator, to learn more about how they are bringing the magic of soccer to promote inclusion and acceptance in their community. Hi Julie. Tell us about the origin of Salmon Creek TOPSoccer. Salmon Creek TOPSoccer started after the coordinator of another local TOPSoccer program left in 2011. My son Zachary had played one season and loved it. A search for new leaders took place and my friend Brandi Dyment and I said we wanted to continue TOPSoccer but as a new program. Salmon Creek TOPSoccer was born. Our first season was in February 2012. Brandi and I started as co-directors. We were both busy advocates for our children and volunteering in many organizations. Eventually, Brandi stepped away to pursue other advocacy passions. My family helps me a lot with running the program, plus we have a great group of volunteer coaches and parents who do so much to keep things running smoothly. We are currently in our 18th season. We’ve had two seasons every year except 2020, when we finished our Winter season two weeks before the COVID-19 lockdown started. My son was in 1st grade when we started this so that he could continue to play. He is now close to finishing 11th grade and has transitioned to being a buddy to younger players. How many TOPSoccer groups are there around the region? Around the country? There are two programs in Southwest Washington, four in the Portland metro area and nine currently in Washington State. In 2019, US Youth Soccer reported 461 TOPSoccer programs and 13,737 players total across the United States. What ages does Salmon Creek TOPSoccer support? Players have to be at least four years old and there is no upper age limit. Buddies need to be 12 or older and do not need any soccer experience.
What does a typical season look like? We have a winter season and a summer season. Over the last six years, Salmon Creek Indoor Arena has been our base, allowing us to meet despite any weather condition. A consistent environment each week is great for our players and families. A typical season runs between 6 - 8 weeks, one day per week. When we meet, we form groups that work best for the kids. We sort them by size and ability. We might have 2 - 3 sessions during that day. A typical day will start with a warm-up, running through some drills, and playing small side games. Practice looks very similar to recreational club soccer, with adaptations as needed. Our head coach, Rocky Fresh, looks at what skills our players have acquired and plans drills that develop the next level of skills mastery. I’d like to think that we really just let the game do its thing. There’s magic in the soccer ball. We try to help each player find that magic in his or her own way. The level of engagement depends on each person. So we do lots of things you’d see at any fun soccer practice. We dribble, we pass, we score lots of goals. We usually finish with a game—or split into a couple of games—that again groups the kids into appropriately competitive cohorts. We want the kids to gain confidence through competence, so there are lots of little challenges for them throughout practice. And lots of enthusiastic support. It is great to see them succeed. And we want them to leave sweaty and smiling. Are all TOPSoccer programs the same or do you have flexibility in determining the services you offer? There is flexibility as long as the focus is on providing an inclusive, safe, and fun environment for all. Our program has practices once a week with groups determined not by age or diagnosis, but rather by the skills and interests of each player. We make sure our taller, faster players are not on the field with our younger or less mobile players. As an example, our players on wheels are included with their peers, not separated based on the equipment they use to get around. Do you or your volunteers have a personal connection to someone who is autistic or with other disabilities? Our son is autistic and epileptic. I have ADHD, diagnosed as an adult. Our daughter has ADHD and Postural Orthostatic Continued on page 22 www.spectrumlife.org
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Salmon Creek TOPSoccer, continued from page 21 Tachycardia Syndrome (POTS). Some of our coaches have kids who have ASD or another disability. Others are working in careers with disabled people. Some of our buddies have a connection through school to people they know with autism or another disability. How does the buddy program work? The buddies are essential to our program. We have one-to-one buddies for each of our players. We recruit
as also serving our buddies, as they get a lot out of the program too. They get a place where they are also accepted as they are, accommodated if needed, and get to learn about how they are more like our players than they are different. We have 6 - 8 coaches and several dozen buddies each practice session. We think the coaches and buddies would count themselves in that “served” number. The great thing is that TOPSoccer is transformative for everyone involved. We watch the buddies grow, along with the players. And the
buddies through local soccer clubs, schools, clubs, and word of mouth. We use social media hoping to reach teens or parents of teens who are interested. Most stick around for as many seasons as they can because they quickly realize they are simply playing soccer with kids and fall in love with the program. The most effective training is meeting with the buddies on the day of their first practice. We give them some of the basic rules that are different from their own soccer practices and talk to them about common misconceptions. As an example, someone who may be nonspeaking is still hearing and responding to you. You just have to pay attention to how they communicate, which may be with body language rather than spoken words. Coaches and lead buddies get practice going, providing encouragement and guidance as needed. We try to have really good communication going on so buddies are comfortable asking questions. We also typically have at least one coach who is a Special Education teacher or paraeducator. They are super helpful in guiding our buddies to a better understanding of the support a specific player needs. Before COVID-19, how many people were you serving? For the last couple of years, we were reaching between 50 - 60 players consistently each season. I see our program
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coaches, even if they are involved with sports or kids with special health needs in other parts of their lives, they get a unique experience during our time together. You’ve recently returned to the field. What have been the challenges and successes? We have a small group of players who we invited to join us to get on the field so we could prepare for a larger season this summer with COVID protocols. We wanted to get on the field with players and we knew we would need to figure out the logistics and adaptations to get all who are interested back on the field this summer. The challenges were mostly before we even entered the building. We are following Washington Youth Soccer regarding Return to Play guidelines to determine which drills can be used as is and which drills needed altering for proper distancing. Coach Rocky adapted our end of practice cheer and it has been beautiful. Everyone has adapted pretty well to coaching and playing in a mask. If a player needs a mask break, they step outside with a parent for a few minutes and then come back in. Most don’t take a mask break, they want to play the whole 45 minutes. Continued on next page
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Salmon Creek TOPSoccer, continued from page 22
As far as successes, the easiest to see was immediately as we gathered for the first practice. After we arrived, you could feel the joy and hum of excitement from players, buddies, and coaches. I don’t know who was the most excited. Coaches were excited to see each other and greet the buddies and then excitement built as the players started arriving. Parents, players, buddies, and coaches left with full hearts. In the parking lot, coaches were practically in tears as we talked about how great it was to see the kids and have time on the field with them. We couldn’t contain our excitement and it spilled over to our own families when we got home. I know we run this program for players to have access to the game of soccer, but truly being back with a small group of our players has shown us that everyone involved benefits from TOPSoccer.
Salmon Creek TOPSoccer has had lots of state, regional and national recognition for buddies, coaches and their awesome Administrator. Congratulations! Selected award winners include: • Washington Youth Soccer TOPSoccer Buddy of the Year (2017) - Zackery Kern • Washington Youth Soccer TOPSoccer Coach of the Year (2018) - Rocky Fresh • US Youth Soccer West Region TOPSoccer Coach of the Year (2018) - Rocky Fresh • US Youth Soccer TOPSoccer Coach of the Year (2018) Rocky Fresh
What are your goals for the future for Salmon Creek TOPSoccer?
• Washington Youth Soccer TOPSoccer Buddy of the Year (2019) - Scott Stevison
For our program, we want to continue to offer inclusive soccer for all who are interested. When the time comes for me to step away. I’d like to have a program that someone could take over and continue to run. Some of us are also working with Tom Tate, our TOPSoccer State Chair, to expand the program to more clubs in the state, by providing training and support to any club in Washington State who is interested. TOPSoccer programs come in all sizes from a couple players to 50 - 60 or more.
• US Youth Soccer West Region TOPSoccer Buddy of the Year (2019) - Scott Stevison • Washington Youth Soccer TOPSoccer Buddy of the Year (2020) - Grace Melbuer • US Youth Soccer West Region TOPSoccer Buddy of the Year (2020) - Grace Melbuer Continued on page 24 www.spectrumlife.org
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Salmon Creek TOPSoccer, continued from page 23 From Carter: I love TOPSoccer. I love having a buddy to help me learn how to play soccer. I get to run around with my friends and I can do it on my own. This year I have a new buddy and a new friend. My favorite part of TOPSoccer is the end when we do the group cheer and talking to my buddy. I have learned how to kick the ball, stop the ball, and even score a goal. I love having my own sport I get to play. (Editor’s Note: We received additional wonderful testimonials about TOPSoccer that we unfortunately did not have room to print. To enjoy an extended version of this article, including stories and anecdotes from Rocky Fresh, Tessa Baldwin, Traci Chun, and more, please visit www.spectrumlife.org.) What is the best way somebody can connect with Salmon Creek TOPSoccer or another TOPSoccer program in their area? Our summer season runs from July 1st through August 19th, 2021. We play each Thursday from 3:30 - 6:30 p.m. in multiple groups. Group assignments and times will be sent out to participants a week before the first practice. • US Youth Soccer TOPSoccer Buddy of the Year (2020) Grace Melbuer • Washington Youth Soccer Administrator of the Year (2020) - Julie Borghello • US Youth Soccer West Region Administrator of the Year (2020) - Julie Borghello • US Youth Soccer Administrator of the Year (2020) Julie Borghello
The cost is no more than $30 and scholarships are available. Email Julie Borghello at salmoncreektopsoccer@gmail.com Facebook: www.facebook.com/salmoncreektopsoccer Instagram: @salmoncreektopsoccer Twitter: @SCtopsoccer For clubs in Oregon: oregonyouthsoccer.org/programs/topsoccer If you live outside of this area, you can search TOPSoccer and your state, and you should be able to find someone to contact about TOPSoccer near you.
Please share a story or two about families you have helped. From Julie Sommer: After 12 years, three open heart surgeries, and a brain surgery, my son Kael has never been able to play a sport. From the very first practice, TOPSoccer made Kael feel valued, included, and accepted. He is able to play to his level and special needs. The TOPSoccer program, their coaches, and buddies supported Kael and let my son be himself. Thank you, TOPSoccer.
John “Corner Kick” Krejcha is co-founder of Autism Empowerment and serves as Programs Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is a guest host for the Autism Empowerment podcast. John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family who is not on the autism spectrum, he identifies as a neurodiverse and loving ally.
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Washington State
Call 888-754-8798 ext.1 Visit us online at: https://ddetf.wa.gov
Find out if you’re eligible A Washington State ABLE Account is a flexible and convenient way for people living with disabilities to keep their current benefits while also investing in their life to come. www.spectrumlife.org
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RECREATION
Ten Years of By Brian Tashima The beginning of the Joel Suzuki series can be traced back to a number of different dates. It could be the day in April 2010 when my son, who is on the autism spectrum, asked me to write him a book. Or it could be April 30, 2011, the day I completed the first draft of my manuscript. Or it could be July 17, 2012, the day Secret of the Songshell, Book One of the Spectraland Saga was launched into the world. While it could be any or all of those dates, I like to think of the summer of 2011 as being an appropriate starting point, because it was then that I decided I wanted my book to not only be a fun one-off project for me and my son, but also a
way to provide inspiration and empowerment to autistic kids everywhere. In the ten years that have followed, I’ve learned a lot, have met many wonderful people, and have had some awesome and amazing experiences. Prior to starting the Joel Suzuki series, I had been involved in the autism community in a limited way, as information about autism was still hard to come by. I was aware of the challenges my son was facing and I wanted to help him but was unsure of what to do. As fate would have it, I ended up meeting John and Karen Krejcha (our sons were classmates), who were embarking on a journey of their own with the founding of an organization called Autism Empowerment. When they told me about what they were doing, I knew I wanted to be a part of it. Thanks to them, I’ve had the opportunity to learn more about autism while giving back to the community via volunteering and donations. Autism Empowerment and the
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A Retrospective Joel Suzuki series have been on sort of a parallel path ever since then, growing together and supporting each other along the way. My son has also been a volunteer for their organization, and I think they’ve had a significant positive impact on him by giving him a chance to interact with his peers and assume roles of responsibility. I’ve been involved with other autism organizations as well, both in the Vancouver, Washington area and elsewhere, and while
some of them may have had differing philosophies or approaches, it was nice to see the sheer volume of support and advocacy that existed within the community. Over the years, the amount of autism information and resources that are available has steadily grown, a development I believe has contributed to improving the quality of life for my son and others. Not only has the amount of information and resources grown, but autistic representation in the media has increased as well. I’ve always felt that kids should be able to see themselves in the stories they read and watch, and through my involvement in the autism community I’ve also learned the importance of accurate and respectful portrayals, which is something I strive to accomplish in my own book Continued on next page
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Ten Years of Joel Suzuki, continued from page 26 series. One of the ways I accomplish this is through the use of sensitivity readers—members of the groups my characters represent who will read early drafts of my work and provide feedback and guidance. Authentic representation is a point that I always try to bring up whenever I’m doing a presentation in the literary world, which is another fantastic opportunity that the Joel Suzuki series has afforded me. From speaking on panels at conferences to giving lessons at schools and to other student groups, it’s been another way to help spread the word about
autism acceptance while passing on some of the things I’ve learned about writing and publishing. What are some of those things, those of you who are aspiring novelists may ask? Well, aside from using sensitivity readers, the biggest piece of advice I can give would be to just write. Make writing part of your daily routine, even if whatever you’re writing is never seen by anyone else. Get the words out first, then fix them later. Who knows, what you write may just be the best thing you’ve ever done! The most gratifying part of the past ten years has been seeing the difference that I’ve been able to make in kids’ lives. After one particular school presentation, I received a letter from an autistic student in the class I spoke to thanking me for writing my book and saying that it made him feel much better about himself. On top of that, I received another letter, this one from his neurotypical classmate, saying that reading my book helped him understand his classmate that much more.
On a personal level, being involved in the autism community has taught me the importance of empathy. In a previous article for Spectrum Life Magazine I wrote about how my writing journey led to the discovery that my dad is on the spectrum as well, which resulted in my seeing him through a new “lens of acceptance” that dramatically improved our relationship. This change in perspective spilled over into how I view other people in general, contributing to my goal of helping to make the world a more positive place.
Some other highlights have included meeting Temple Grandin (you may have heard of her), performing with an amazing drummer and musician named Ian Engelsman, and working with a talented voice actor named Jonathan Cormur on the audiobook version of Secret of the Songshell. There have been many more, probably too much to list here, and I’ll treasure every moment for the rest of my life. Over the next ten years, I hope to be able to write and publish at least five more books in the Joel Suzuki series (five are out so far, with eleven planned in all), and to continue being an active advocate for my son and the autism community as a whole. A big thank you goes out to everyone who has supported me, and here’s to more great years ahead! To learn more and stay connected, visit www.joelsuzuki.com.
Brian Tashima is an author, screenwriter, musician, and philanthropist. His credits include the award-winning Joel Suzuki series—a set of young adult sci-fi/fantasy novels about a teenage boy who travels to a world where music is magic and autism is a superpower—and the manga-style comic book series Glorified. He also sings and plays guitar for the nerd-punk band Second Player Score and serves on the Board of Directors for Autism Empowerment, a nonprofit organization dedicated to improving the quality of life for people and families in the autism community. Visit www.joelsuzuki.com.
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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
IN THIS SECTION Lessons Learned from COVID-19....................................................... 29 Transitioning to In-Person Learning............................................... 32 One-to-One Support in the Classroom......................................... 34
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EDUCATION
Lessons Learned from COVID-19 Learning must be humanized. Equity is essential. By Aaron Blackwelder This has been an eventful school year and one I hope to never experience again. The number of changes, accommodations, and new structures developed over the past year made teaching more stressful for me than any other. Starting the year in distance learning and shifting from hybrid to hybrid 2.0, made this 23-year veteran feel like a brand new teacher thrice over. This was certainly a school year like no other.
I have witnessed kids engage at so many levels during the pandemic. Kids who were strong students before the closure of schools struggled in distance learning. They needed structure and more contact time in school. However, at the same time, the opposite was true. Some kids who struggled in traditional school settings seemed to blossom during distance learning.
Even though teaching in COVID-19 was difficult, there are many lessons I have learned along the way that I’m hoping educators will consider as we return for the 2021–22 school year.
Not all kids need to be at school 7 hours a day, 180 days a year, but some do. Maybe we should reconsider the idea of seat time and the Carnegie Unit (120 hours of contact time with an
Not everyone learns the same.
instructor) as a measure that ensures academic success. Kids are capable of receiving an education in a variety of settings. I hope this is something that we consider as we return to school in September. Maybe we can offer both asynchronous and in-person classes to students. If kids can thrive in different models, maybe we need to provide public options that allow them to engage in models that meet their needs.
I am a big advocate for personalized, student-centered learning. Just like there isn’t a single car that fits the needs of every driver nor the same shoe that fits the lifestyle of every person, there isn’t a structure that meets the needs of every learner. There is a push in education to meet standards. But the idea of a standardized education suggests that there is only one way kids learn or that all of them have the same interests, talents, and ambitions. However, this is not true and we don’t want this to be true. We are a nation with diverse needs. We need both the auto mechanic and the lawyer and it takes different personalities to do each of these jobs well. School should prepare kids to discover and develop their unique strengths and interests within, rather than expect compliance and conformity.
Equity is essential. One of the greatest struggles educators faced in the fall of 2020 was the lack of internet access. Where I teach in Woodland, Washington is considered a rural community. Though the internet is available to families who live in Continued on page 30 www.spectrumlife.org
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Lessons Learned from COVID-19, continued from page 29 not uncommon to have to complete 40 math problems, get the definition of 15 vocabulary words, read 20 pages from my history textbook, and fill out several worksheets for science. Currently, American history classes try to get to the Civil War by March because they feel obligated to condense 245 years of history in 180 days. Yes, I agree that we want to expose our children to as much content as we can, as the more they know, the more they are able to engage in the world. But what is more important is helping our students understand what our content means and how we can learn from their lessons. If educators want learners to engage in their content, they have to provide opportunities to think, discuss, reflect, analyze, and synthesize information. Learning is not a race, but rather a challenge to be a better person. town, many families live outside of town. This put students living in more remote areas at a serious disadvantage. And though the internet might be available in town, not all of our families could afford to pay for quality internet, thus creating one more hurdle for our students of poverty. Besides this, the bandwidth of our students was not equal. While some families could afford high-speed internet, others could only afford basic services. Many of my students found it impossible to turn on their video cameras during class or download essential documents without crashing or freezing their computers. As we move forward, we need to ensure all of our learners have access to a quality education and internet access seems to be a key to this. Accessibility is essential if we want to help all of our children have an opportunity to compete in an ever-changing economy. Learning should not create anxiety. Since COVID-19 took over our lives, mental health issues are soaring. According to WebMD, the number of Americans suffering from anxiety has tripled and those with depression have quadrupled¹. This includes our children. Educators cannot control students’ responses to the pandemic. We cannot ensure their families will be safe or their parents will retain their jobs, or that their loved ones will not catch the deadly disease. However, we can control what we do in our classrooms. The stress of an upcoming test or the concern of maintaining a high grade point average in order to get into a good college are triggers for students. Learning should create curiosity and drive students to discovery. It should create joy. Our students have experienced so much trauma over the past year. School should give them an opportunity to escape the worries of the world while promoting self-discovery.
Teaching in distance learning during COVID-19 challenged me to prioritize the lessons I wanted my students to learn from my class and eliminate any fluff or activities that were not essential in developing the skills I found important. Learning must be humanized. Quite often, there is a disconnect between students and teachers. I remember when I was in school hearing teachers say, “It is my job to teach and students’ jobs to learn.” Though there is some truth in this statement, it ignores the human element of teaching and learning and absolves the teacher of an obligation to engage with and learn with their students. I believe learning is a conversation — and this conversation has been going on for thousands of years. It started when one of our ancient ancestors asked a question and, with the help of others, discovered the answer to this question. And once this answer was discovered, the knowledge was passed down from one generation to the next. We are heirs of this conversation and it is our job to continue to contribute and grow this conversation. Conversations require at least two people who both listen and share. In school, we formalize this conversation. However, conversation happens all the time and does not require a classroom. Conversations are the most human of interactions and rely on two or more people seeing value in one another. It is clear to me that we need more human interaction in school. Though this idea is a core belief, I recently had an experience that solidified it.
Less is more.
I had a student transfer into my school at the beginning of February 2021 in the heart of distance learning. I teach in a relatively small school which allows me to get to know my students quite well. This student never turned on his camera or microphone. When he asked a question, he would type it into the chat. This student was falling behind in my class and I became concerned.
Many teachers try to pack as much content as they can into a regular school year. I know when I was in school, it was
I contacted his mother to find out more about this young man. We talked for some time and she shared that he had Continued on next page
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Lessons Learned from COVID-19, continued from page 30 Asperger’s. Having two boys on the autism spectrum myself, I became more interested in this young man and asked the mother if I could drop by one evening to formally introduce myself to her son. She agreed. I went to their house on my way home from work one evening. I knocked on the door and I got to talk to the mom and son for about 45 minutes. This allowed me to listen to some of their concerns with education and offer my support. I got to talk to the son about his interest in music and video games. We never once talked about missing work in my class or a lack of engagement. We centered the conversation around getting to know one another. After this, the young man started turning in work. He got caught up on all the assignments he was missing in my class and started scheduling appointments to get help. It was a complete turnaround.
I know doing this can feel intimidating or overwhelming for teachers and I know it is impossible to do this for 130 – 150 students. But we need to make time to humanize learning. Teachers need to see their students as unique individuals with a desire to learn and grow, and students need to see their teachers as people who want to nurture and support them throughout the process. Teachers need to take the time to build relationships with their students. This is key to every students’ success. Reference: 1. Mundell, E.J., (2020, August 13), Mental Health Issues Soaring During COVID Pandemic, WebMD, https://wb.md/3hMZeWH
Aaron Blackwelder teaches high school English and coaches boys’ and girls’ golf in Southwest Washington. He is the co-founder of Teachers Going Gradeless, host of the podcast Beyond the Curriculum, and the educational contributor to Spectrum Life Magazine. Aaron is a Washington State English Teachers Fellow, was nominated for Washington State Teacher of the Year in 2019, and is a five-time golf coach of the year. Aaron is a husband and father of two boys on the autism spectrum, who inspire him to become the teacher who meets the needs of all students.
Fe Be a He ture re d ! 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:
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EDUCATION
Transitioning to In-Person Learning Practicing and preparing for the unknown. by Diane Wiscarson and Carly Cannon
As eager as many of us are to get back into the classroom this fall, there are still many unknowns and unsettling feelings. Some school districts are going to be fully in-person, while others are incorporating a hybrid approach with part remote learning and part in-person. Some students are transitioning to new schools or even adult transition programs.
The schedule can be a written and/or a picture reflection of what a student’s day will look like.
Transitioning back to school, however that may look, will likely be challenging for many students. Whatever a student’s education plan may look like, there are ways parents can help make those transitions from remote learning to in-person learning go smoothly.
Introducing School
This is especially key for students who will be experiencing hybrid programs in the fall. The schedule should indicate to the student where they will be and what they will be doing each day — whether at in-person school or participating remotely.
How Schedules Can Help
Whether a student is starting a new school, returning to their old school, or starting work through an adult transition program, they should be introduced to their environment well in advance. Parents and districts can try the following strategies to help aid in that transition.
Starting a new model can be the cause of much anxiety for students. Having a consistent schedule can help! It is important to keep a schedule in an open and visible place.
First, see if a tour can be arranged in the student’s school or work environment. This is particularly useful if a student has not been in a school or work physical setting over
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Second, arrange a meet and greet with a student’s teachers or work supervisors. Teachers and supervisors may be wearing a mask when a student meets them in person, which can be confusing and difficult to form connections. Introducing a student to their teachers or supervisors without a mask over video can help minimize this challenge. Finally, have photos of the school or work setting available at home. See if a student’s teachers or supervisors will provide a photo of themselves, both with and without masks, as well as photos of their classroom or workspace set up for social distancing (i.e. desks spaced out). Practicing Social Situations With the start of a new school year comes new social situations and challenges for all students. Some situations may carry over from past years, like taking turns with classmates or coworkers, whereas other situations may be completely new. For example, students will likely be expected to remain three feet apart from one another while at school. Parents can consider two tools to help a student adapt to challenging social situations. First, parents can consider using story narratives, often called “social stories.” Story narratives are stories told with pictures that describe a particular social situation and offer responses that a student can choose from that would be appropriate for the given situation. This can be used to provide students with the necessary skills to navigate changing from one classroom to the next, coming home from school or work, or using social distancing skills such as interacting with people wearing a mask.
Finding a safe person or safe space at school or workplace can also assist your student with transitioning back to in-person learning. Parents should contact the other members of their student’s Individualized Education Program (IEP) team to determine what person or place will serve as a student’s safe person or place while at school. Building a Routine Having a consistent routine is essential. Parents should begin the process of building a routine around a student’s school or work schedule well in advance — even weeks or months before it actually starts! For example, parents can establish a morning routine by waking up a student earlier and earlier over time, until they are waking up at the time they will need to be up for school or work. Parents should try incorporating as many transitions as their student will experience at school or work as possible to prepare them. This could be practicing drop-offs and pick-ups or going from an activity to eating lunch. Also, parents might consider counting down the days until a student’s routine goes fully into effect. This can be done by crossing off days on a calendar to show how soon school is starting. Conclusion Going into this fall, there are many unknowns. However, by repeatedly and consistently incorporating some of these approaches to a student’s transition to school or work, those uncertainties can be minimized. Parents should consider starting to prepare their student for school or work early, and should communicate with their student’s school or workplace to keep updated on what to expect.
Photo courtesy of Wendy Wilson
the past year. Going to a new place where a student has never been before or has not been to in a long time can be stressful, so a tour offers a gentler introduction. The tour can also be done virtually if need be!
Second, parents can use video modeling to expose their students to the situations they will be experiencing at school or work. Video modeling can be used to break down the steps and show the goal behavior. Video models can be particularly useful for showing a student how to put on and take off a mask or how to respond to a teacher or supervisor’s instructions. Adjusting to Changes Reinforcement and motivational systems are another way to positively associate a student with change. Make sure to keep reinforcements or rewards consistent. If a student will be returning to a hybrid learning model, try to match the reinforcement system used at home with the system used at school while a student is doing schoolwork. This consistency will help match their association with schoolwork and not with a location. Reinforcement systems can be used as a tool to ease separation anxiety students might be experiencing from being away from their parents, especially because parents have served as their student’s safe person and main support system for over a year. Parents can consider offering a special prize or rewarding activity when their student participates in an activity.
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Diane Wiscarson worked her way through the special education system on behalf of her son, and in so doing, found her passion for helping other families navigate special education and the law. Since graduating from law school in 1996, and founding Wiscarson Law, she has represented thousands of families of special education students in Oregon and Washington. Carly Cannon is a law clerk at Wiscarson Law and a student at the University of Oregon School of Law, where she is focusing on special education law. Find more information at wiscarsonlaw.com.
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EDUCATION
One-to-One Support in the Classroom The Who, What, When, Why and How by Diane Wiscarson and Taylar Lewis
Parents of students involved in specialized education frequently want “one-to-one” support for their children. However, what does one-to-one support look like, and when does a student need it? The journey to getting each student the right support can be complicated, and at times, frustrating. A dedicated one-to-one aide may be assigned to a student if the student needs the support to access a free appropriate public education (FAPE). What is one-to-one support? “One-to-one” refers to one aide assigned exclusively to one
student for a specified period of time, up to the entire school day. The main responsibility of an aide is to work with students who need specific attention. A one-to-one aide can provide support to a student in many ways. Schools typically assign a one-to-one aide for behavior, instruction, activities of daily living, or social skills. For example, an aide might help a student with using the bathroom, mobility issues, specialized communication, or staying on task. One-to-one aides are called “instructional aides,” “educational assistants,” or “paraprofessionals,” depending on the school district. When does a school need to provide a one-to-one aide? School districts are required to provide every student a FAPE. Districts provide FAPE for special education students through an Individualized Education Program (IEP), and a student’s IEP team can make the decision to include a one-to-one aide. Parents are part of the IEP team.
This decision should be based on the student’s needs, which are determined through evaluations, observations, and IEP team discussions. Depending on what the need is, a doctor’s note can sometimes help support this decision. Essentially, if a student needs a particular service or support to participate in or access their education, the school must provide that service or support. These criteria apply to one-to-one aides as well. Why would your student need a one-to-one aide? Most students benefit from one-to-one attention. However, benefiting from extra adult support does not mean that a student needs this service to access their education.
Evaluations, such as a Functional Behavior Assessment, and classroom observations, can help determine if your student needs one-to-one support in order to access their education. Test scores, work, observations, and evaluations can all be used as data to determine whether a student needs additional support. If a student cannot access their education without dedicated adult support, a one-to-one aide makes sense. How is the decision made? There are many factors the IEP team should consider when deciding if an aide is needed, and if so, for what purpose. For example, the team should consider the health or daily living skills of the student. Does the student need assistance with most personal care? Does the student require specialized supports like orthotics? The team might also consider behavioral needs. Does the student have aggressive or dangerous behaviors? Some examples of serious behaviors that might indicate the need for Continued on next page
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One-to-One Support in the Classroom, continued from page 34
a one-to-one aide include a student who regularly runs out of the classroom, or who hits, kicks, or bites other people. Sometimes an aide is appropriate if a student is unable to participate in class without constant prompting. For instance, does the student need adults in close proximity constantly to stay on task? If so, an aide might make sense! The aide could help the student access instructions, transitions, or even social interactions. If the team determines that any of the above are true for the student (which are just a few examples), and the student needs that level of support to access their education, a one-to-one aide might be appropriate. Once the need for an aide has been defined, the team should define the tasks or responsibilities that an aide will support. What should an aide be assisting the student with specifically? A one-to-one aide shouldn’t be doing all tasks for a student! Often, the goal of an aide is to help support the student or help the student learn how to do tasks independently. For instance, maybe a student needs help with verbal or physical prompts to remain on task. If that is the case, then the aide should not be helping that student use the restroom or carrying the student’s books. The aide should stick to the support needed and identified on the IEP – prompts to stay on task. Being clear about the role of an aide will lead to less confusion and frustration down the road. Are there pros and cons? As with most IEP decisions, there are pros and cons to a oneto-one aide for a student. An aide can be a great way to include students in general education. For example, an aide can help students with behavioral needs interact safely with their classmates.
First, check in regularly with your student’s teachers. This is a good way to ask how things are going in the classroom and to share any concerns you might have. Second, stay in touch with your student’s special education case manager. The case manager is responsible for overseeing your student’s IEP and is a good point person if there are any questions or concerns. If you continue to have unmet problems, you can request an IEP meeting. Parents always have the right to request IEP meetings for their children if they have questions or concerns. Finally, pay attention to your student’s IEP progress notes. IEPs are required to include measurable annual goals. Districts should issue IEP progress notes that report how a student is doing on their IEP goals. If your student is not progressing, or you can’t tell based on the progress reporting, ask for an IEP meeting to discuss what might need to change. If none of the above strategies work, then parents also have legal rights. Parents can file a complaint with their state’s department of education or file a due process complaint. Parents can also request mediation with the district. All of these options vary in time, money, and potential outcomes. Summary Getting a one-to-one aide for a student can be a challenge. Parents should be prepared to hear “no” from the district at first. Many districts are reluctant to provide one-to-one support. That’s why it’s beneficial to come prepared with information about why your student needs this support, what the support would like, and how it could be provided. One-to-one support can make all the difference for students and their ability to participate in and benefit from their education. Photo courtesy of Wendy Wilson
Students are entitled to be educated in the “least restrictive environment” possible for them. Sometimes, an aide can help students access a less restrictive environment just by providing support! One-to-one support comes with some drawbacks as well. Sometimes, adult support can make students feel separated from their classmates. Some students may feel stigmatized or singled out. Additionally, some students may get very attached or dependent on their aide, especially if working with one particular adult. The pros and cons of a one-to-one aide must be balanced and considered for each individual student in their unique circumstances. Make sure your IEP team has a thoughtful discussion about this important support when appropriate. How can parents be sure their student is getting the proper support? Like all IEP supports and accommodations, ensuring that your student’s one-to-one support is being implemented appropriately can be challenging. There are a few things parents can do, however, to monitor whether their student’s IEP is being followed.
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Diane Wiscarson is the founding attorney of Wiscarson Law, the only firm in Oregon with a primary practice area of special education law for families, and has represented thousands of families of special education students in Oregon and Washington. Taylar Lewis is also an attorney with Wiscarson Law, having previously served as a law clerk at the firm while attending the University of Oregon School of Law. Find more information at www.wiscarsonlaw.com.
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health & wellness
IN THIS SECTION Ask Spectrum Life .............................................................................. 37 Starting A Healthy Fitness Routine ....................................................40
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Photo courtesy of Mary Rebekah Moore
DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
HEALTH + WELLNESS
Ask Spectrum Life Autism Resources for our Community Each issue, Spectrum Life Editor and content curator, Karen Krejcha answers frequently asked questions about autism-related resources across the lifespan for our community. Dear Spectrum Life Readers, We’re excited to be celebrating our 5th anniversary of Spectrum Life Magazine with you! In this edition of Ask Spectrum Life, we’re going behind the scenes to share a little of the magazine’s history as well as some of our favorite covers along the way. We’ll also be doing a special 5th anniversary show on our Autism Empowerment Podcast later this summer, so be sure to check that out too at www.AutismEmpowermentPodcast.org. How can this be your 5th anniversary if the magazine was founded in 2012? Good question! For those of you who have been reading with us for a while, Courtney Freitag was the original founder of Spectrums Magazine. Autism Empowerment officially acquired Spectrums on April 22nd, 2016. Here is how Courtney put it back then. “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 to 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. 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.”
What was your recollection of that experience? It was September 16th, 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. Being an autistic self-advocate, parent advocate and co-founder 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, Empower. 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. It was February 8th, 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. Did you have magazine or publishing experience? No. Although my husband (and AE co-founder) John and I both like to write and I had been freelancing for a number of years, creating, editing, publishing and distributing a magazine were not skills we previously would describe on our LinkedIn accounts. What we did have was a lot of passion for autistic people, their families and the stories they had to tell. People are Continued on page 38 www.spectrumlife.org
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coming into the autism community all the time and they’re looking for hope, they’re looking for resources and they’re looking for connection. We recognized that an autistic-led magazine would be an incredible way to connect people in the community with content talking about tough issues impacting community members. We do our best to provide that in a positive, accepting and respectful way. This issue marks our 18th publication. Autism Empowerment has published 6 issues as Spectrums Magazine and 12 as Spectrum Life Magazine. What have been some of your favorite covers?
What do you see for the future of Spectrum Life Magazine? • Cross-promotion with the Autism Empowerment Podcast to get a larger audience. • Including additional stories and articles on the SpectrumLife.org website • Expanding the publication nationally. • More advocacy. More storytelling. More tough issues. • Additional outreach and stories from underserved communities. • Continuing to shine a light on the good works of others.
I know I’m biased with this one, however my favorite is our first because it’s a picture of John and our youngest son. Our oldest child also took photos that were published in that first issue. We figured if for some reason, we only ever published one issue, we wanted it to be one that the grandparents could be proud of! Other favorite covers include the ones where through Autism Empowerment, we have developed a personal relationship with the person, family or animal pictured. Diverse representation and equity has been important to us. We want people who pick up a copy of the magazine to see people who resemble themselves within the pages. The autism spectrum is diverse and the people represented in our magazine should be also.
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• Ambassadors like you continuing to invest in autistic potential.
Here’s to many more anniversaries to come!
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HEALTH + WELLNESS
Starting a Healthy Fitness
Routine Let’s get moving! By Ryan Lockard, CSCS*D, CSPS*D
With vaccination rates on the rise and restrictions beginning to be eased, many are looking to shed those added pounds. Below you will find information and tips to help guide you on your way to becoming a healthier version of you. I am new to physical activity. What should be my starting point? Move. Many of us have found ourselves staring at a screen of some sort for extended periods of time on a daily basis during the pandemic. The easiest and most underrated form of exercise is walking. Track your daily steps by using a pedometer or some other fitness tracker, and try to increase your steps by 1,000 each week until you are averaging 15,000 steps per day. How much physical activity should I try to do? CDC.gov recommends that adults get 150 minutes of moderate aerobic activity a week (e.g., brisk walking) and two or more days a week of muscle strengthening exercises. How should I warm up and cool down? A typical warm-up used to consist of a lot of static stretching, which means holding a position or a pose for a desired amount of time. Lately, studies have been finding the benefits of doing dynamic exercises, which means moving your muscles through a specific range of motion as a warm-up, and using static stretches for your cool down. The exercises and stretches chosen should coincide with the workout that you will be doing to get your muscles primed and ready. How do I know when to increase my activity levels and exercise in a safe way? Track your activity and how you feel afterwards. We use an app to track all of our clients’ workouts so that we can see their progress and make decisions on when it is appropriate to change their program to make it more difficult.
should be able to design a fitness program for you based on your goals, and the exercise selection should mirror your ability level and exercise experience. Your trainer is there to help guide you in reaching your goals, as well as there to encourage and support you throughout your fitness journey. You should never feel like you’re alone. What other things should I consider? • Water intake. Chances are that you are not drinking enough water. Your daily water need will change based on your activity level, but a general rule of thumb is that you should aim to drink half of your weight in ounces of water (e.g., A 200 lb. individual should aim to drink at least 100 ounces of water daily). • How well have you been sleeping? Sleep doesn’t only rest your body, but it also helps flush your brain of toxins. You should aim for 7 - 9 hours of quality sleep a night. Here are ways that can help increase your quality of sleep: - Increase your daily activity level. - Create a bedtime routine (helps prepare the body for bed). - Limit screen time before bed. - Place a Sansevieria trifasciata (snake plant) in your bedroom to help increase oxygen levels at night. - Take a magnesium supplement. - Limit alcohol intake. • Daily nutritional habits. Think of your body as a car. Sure, it may operate on cheap gas, but you will reach optimal and long-lasting performance by fueling it with premium. You should avoid (or at least limit) eating fast food and drinking soda. Instead, eat whole and unprocessed foods and drink water. Hope these tips help! If you are feeling lost or need assistance, you can reach me directly at 503.863.0512. Now get out there and start moving!
Ryan Lockard is the Founder and CEO of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon, that specializes in fitness programs for You should work with a certified professional to help you meet children and adults with special needs. He your fitness goals. They will ensure that you are increasing is a Certified Strength and Conditioning activity levels appropriately, as well as doing the exercises Specialist (NCSA), Certified Special correctly. If you are not comfortable working with someone in Populations Specialist (NSCA), and person yet, many places offer virtual or digital training options. currently serves on the board of directors for the Autism Society of America and How do I adapt an exercise for my ability level? the Central Oregon Disability Support A fitness professional will be able to help you adapt exercises Network. He can be reached based on your ability level. There are a series of progressions at Ryan@SpecialtyAthleticTraining.com and regressions for every movement. The fitness professional or www.SpecialtyAthleticTraining.com.
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Photo courtesy of Lavinia Nitu - Ma.Ni. Photo Studio
The COVID-19 pandemic has caused levels of anxiety and stress to increase during the past 18 months. Something else that may have increased as well is your weight. Many Americans gained weight since the beginning of the global pandemic due to increased stress, increased eating, less movement, increased alcohol consumption, and less sleep.
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Welcome to Autism Empowerment & Spectrum Life Magazine’s 10th Anniversary Contest and Celebration! We value your time and feedback. Your answers help us learn more about you and how we can better serve you, your family (when applicable) and the autism community at large. Answer our survey by August 15th, 2021 10 lucky winners will receive gift cards and AE merch! If you win, we will contact you via email and mail your prize package to you.
https://www.surveymonkey.com/r/SLMSummer2021 On behalf of Autism Empowerment and Spectrum Life Magazine, thank you again for your support!
Tax-deductible donation for your car, truck, RV or boat (Running or not) • Picked up free of charge by Donate For Charity • Proceeds go to Autism Empowerment and Spectrum Life Magazine
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therapy THERAPEUTIC OPTIONS AND RESOURCES
IN THIS SECTION Rejection Sensitive Dysphoria .......................................................................44 Spectrum Life Resource Directory............................................................46 Upcoming Autism Empowerment Events.............................................47
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1815 NW 169th Place • Beaverton www.BOLDPediatrictherapy.com
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THERAPY
Rejection Sensitive Dysphoria When being rejected really hurts. By Dr. Anson Service We all want to be wanted. It is part of the human experience. However, for some, it can be more than a desire, and the mere perception of being rejected can cause enough emotional and physical pain that those who experience it will go to great lengths to avoid it.
rejection. However, this poses some unique difficulties for some with ASD that report having difficulty understanding the intent of others.
This is called Rejection Sensitive Dysphoria (RSD) and is highly correlated with Attention Deficit Hyperactivity Disorder (ADHD). Because ADHD is very often present with an Autism Spectrum Disorder (ASD) diagnosis, RSD can add another level of complexity to an already complex life and way of thinking.
It is thought that our ancestors used certain traits associated with ADHD as a protective factor, and those traits may have helped them hunt and gather more effectively for survival. The RSD trait is no exception to this as a person’s survival in the good ol’ days of our ancestors were dependent on community.
The term Rejection Sensitive Dysphoria was coined by Dr. William Dodson and is relatively new as researchers gain greater understanding of ADHD. While not an official diagnosis, RSD is gaining attention in the autism and ADHD communities to help identify and deal with the struggles of ADHD and ASD that are overlooked or not addressed in the Diagnostic and Statistical Manual of Mental Disorders (DSM–5).
If a person was banished or rejected from their tribe or group, their survival was jeopardized. For this reason, it would make sense that RSD would be an integral part of our ever-evolving selective genetics process that is intended to help us thrive. Being overly sensitive to the rejection of others in a group means that a person tries harder to avoid the emotional and physical pain of rejection, thus increasing their chances of survival.
How might someone with RSD feel?
What does society have to do with it?
While nobody enjoys the feeling of rejection, those with RSD can experience severe mental and emotional pain, and even report feeling actual physical pain because it affects the same areas of the brain that physical pain resides in.
Fast-forwarding thousands of years to today, there are also reasons why those with ADHD are thought to develop RSD. Today we find ourselves in a society that has changed faster than our brains can evolve.
This pain can be so extreme when the person’s mind becomes stuck on the perceived rejection that their digestion system can become upset, they may sweat, breathe heavier, and are essentially in a state of fight or flight.
It is a society that rewards both fitting into the background and standing out. It asks us to be authentic, but only within the boundaries of the social groups we are in. It celebrates having energy, but not too much energy.
How might someone experiencing RSD react?
It insists we have attention to detail, but not so much that we focus too long on one thing, unless that one thing creates wealth or power. Then that person is elevated to a higher status among their peers.
They may feel paralyzed from managing their day effectively, which can cause serious behavioral and emotional dysregulation, such as impulsively saying things to others to get more information on the perceived rejection, saying harsh and mean things to others, and even having outbursts of anger and rage. Often the anger and rage are a result of externalizing their emotions, but once the episode is over, they return to a rather “normal” mood. This rapid swing in moods can be exhausting for the person with RSD and those who are around them and can be misdiagnosed as bipolar disorder. The underlying feeling is a massive amount of shame and guilt that can stick with them indefinitely if not properly addressed. It is important to note that RSD is defined as being extremely distressed by the perception of being rejected, regardless of whether the person is actually being rejected. This is important because being able to challenge thoughts of perceived rejection can decrease the strong emotions and feelings associated with RSD. This self-cognitive challenging can help us reframe a situation to look at the possibilities that might be present other than
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Why does RSD exist?
Our new world tells us that what we see in advertising is worthy of spending our money on yet shames us for it afterward. It insists that in order to be happy, we must be a productive part of our collective society, but we should not allow rejection by that same society to keep us from being happy and productive. What we have is a society based on double binds, hypocrisy, and contradictions. Over the course of the past 200 years, we have created a society that has identified those with protective ADHD and autistic traits as dysfunctional and unworthy, only fit to be court jesters or to have our unconquerable spirit medicated and shamed out of us. Early negative interactions set the stage for long-lasting challenges. Additionally, consider the life of a child with ADHD. They want to move and explore, are excited about learning and eager to
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Rejection Sensitive Dysphoria, continued from page 44 ask questions. At times they are exhausted and cannot help but stare at a wall, and when people talk a lot but say very little, those people tend to blur into the background of their minds. This is a child who is repeatedly commanded to sit down, be quiet, shape up, be still, wait, go, stop, listen, close your ears, and make eye contact. If they don’t get these concepts down as soon as the people in power and authority demand, then they are punished, ridiculed, shamed, and essentially made to feel less than. Research suggests that a child with ADHD experiences about two negative interactions per minute with those they interact with according to William Pelham, director of the Center for Children and Families at Florida International University. From this, we see from a young age that a person with ADHD or autism may be given loud and clear messages that the way they naturally are is not good enough, flawed, and sometimes annoying. Adults and children who are autistic commonly report experiencing early negative feedback also. During those crucial developmental years, when the concept of self is forming, these messages can create a long-lasting, permanent, negative effect throughout their life. Eventually, those with ADHD, autism, and neurodiverse minds begin to accept these kinds of negative messages as fact and will attempt to change who they are to better fit in to reduce negative interactions and rejection, which can often lead to depression and anxiety. As adults, those with ADHD, autism or other differences can often be the target of office gossip, social rejection, and are more likely to be less tolerated because of impulsive tendencies to interrupt, being blunt (mistaken for rudeness), talking too loudly, talking too much, not paying attention, being late with deadlines, procrastination, and so on. What about genetics? In addition to the previously mentioned social and psychological factors, a genetic component may also be responsible for RSD with a hyperarousal of the hypothalamus-pituitary-adrenal (HPA) axis, which regulates the stress response creating extra sensitivity to many things such as rejection. It has also been recognized that even though RSD may be painful and traumatic, it is not caused by trauma. Furthermore, because it is neurologically-based, it is not caused by a lack of “learning how to control” one’s self. Relationships and RSD Maintaining a relationship can be challenging under the most ideal circumstances, but RSD can be especially difficult when left unchecked
in a relationship. RSD craves feedback from the partner to constantly check the health of the relationship. This can be exhausting for the partner who may tire of providing repeated reassurance. A delayed answer to a text can send a person with RSD on an unbridled trip to catastrophe town – population 1. The RSD partner may be fearful of sharing true feelings or explaining impulsive behaviors out of terrifying levels of fear, especially if the other partner has reacted harshly in the past. The emotions can spiral out of control and even result in the person with RSD prematurely ending a relationship so that they are not the one being broken up with. However, when a person and partner are both aware of the RSD, it can provide meaningful opportunities for honest communication and vulnerability within the relationship and can serve to bring a couple closer together. What To Do About It 1. Therapy truly helps. Finding a good therapist who understands RSD is important and can be a person who can listen to you with unconditional positive regard, helping you challenge your own thoughts, and point out areas that need further attention. 2. Because RSD is physical in nature, sometimes medications may help. Seek out a medical professional who understands that medication is not the first line of defense, and may not be permanent, but can assist in helping a person through some exceedingly difficult times until they get themselves feeling solid emotionally and physically again. 3. Dialectical Behavioral Therapy (DBT) group therapy can be a wonderful augmentation to one-on-one therapy. With an emphasis on mindfulness, this can really help with runaway thoughts. 4. In a partnership, education about RSD is vital. Both must treat each other with respect and see RSD as a neurological condition and not a character flaw. A person with RSD is not a bad person. In fact, that is what they are trying to avoid being seen as. If both partners lower their defenses, a person with RSD will be able to feel safe enough to be vulnerable, but it will take time for greater trust to build in both. References: 1. Dr. William Dodson - bit.ly/drdodsonrsd 2. Dr. William Pelham, Jr. - bit.ly/drpelhamrsd Dr. Anson Service is a licensed mental health counselor, and part of a team that assesses individuals for autism, ADHD, and more at Adventure Psychological Services. Dr. Service has written for various magazines and authored several books and is happy to further educate others on autism and other areas of neurodiversity. He and his wife have raised three young men and are now raising their puppy named Luna. Learn more at www.ansonservice.com.
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SPECTRUM LIFE
resource directory
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Spectrum Life Magazine serves youth, adults, and families in the autism community. We seek to partner with nonprofit organizations, businesses, support groups, educators and professionals from a variety of fields who desire to support our community in a meaningful way. If you are an autism-friendly provider who desires to connect with new clients, we can help you make those connections through online directory listings. We also offer advertising and sponsorship opportunities for Spectrum Life Magazine and the Autism Empowerment Podcast. Please contact John Krejcha at spectrumlife@autismempowerment.org or call (360) 852-8369. Spectrum Life Magazine and Autism Empowerment do not endorse, promote or guarantee the services or outcome of any one provider or type of therapy.
We currently list over 1,300 autism-friendly service providers from Oregon, Washington and throughout the United States. Some of the directory categories where you are able to search for providers in your region include: Adult Services Advocacy Assessment and Diagnosis Autism-Friendly Businesses Camps Caregiving Chiropractic Dentists Educational Support Employment Assistance Financial Planning Government Agencies Housing Legal Medical Professionals Psychiatrists/Psychologists Recreation Safety Schools Special Needs Trusts Sports and Fitness Support Groups Therapy and Interventions Transportation Travel The SpectrumLife.org website contains current and past issues of Spectrum Life Magazine, supplemental blog stories, Autism Empowerment Podcast features and a robust autism and disabilty resource directory. Please share this valuable Autism Empowerment program with your friends, family and colleagues. Thank you for your support! To learn more about our Spectrum Life Resource Directory, please visit and bookmark www.SpectrumLife.org. If you have a resource you’d like to see added, please contact us at spectrumlife@autismempowerment.org or through our website.
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Ongoing Service & Volunteerism: • Autism Serves Kids Care Club • Autism Serves - Volunteerism for all ages Online Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Adults, Parents, Allies)
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As an Independent Apartment Community (IAC), Stephen’s Place offers positive living options for adults with developmental disabilities. fo With forty-one modern apartments, our focus is on community; empowering and enabling each resident to be a productive contributing member of their community.
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Apartment rent is inclusive of all meals, supportive services, nursing & ADL assistance and programming including: Job Skills Training, Placement & Coaching Life Skills Training Ho Horticultural Therapy Group Fitness Classes & Yoga Arts & Crafts Movie Nights Sporting Events Group Outings to Local Attractions Transportation Services We also offer a Day Program to people who live outside of the Stephen’s Place community, but would like to build peer relationships
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and participate in activities.