FREE PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR AUTISM SPECTRUM DISORDER
PASSION PROJECTS STEPHEN’S PLACE CREATING VISUALS INSTANTLY DIVISION IN THE AUTISM COMMUNITY SENSORY FRIENDLY SUMMER FUN HUMAN TRAFFICKING
NEW! Lightly-weighted for an extra sense of security and stability, the TwiddleNathan helps youngsters find that “just-right zone” for maintaining attention and appropriate behavior for tasks and activities. Crafted from cozy, durable fabrics and plush fleece, the Nathan features high-grade fidgets attached with ribbon loops that snap, to enable switching around and personalizing fidgets for variety’s sake, training purposes, or the child’s own preferences. Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.
Try a Twiddle® today!
Our Pledge: 50 cents for each TwiddleNathan sold will be donated to the Autism Society of America.
FEATURED SECTIONS ADVOCACY
Division in the Autism Community It’s time to bridge the divide. We Know Who We Are A Stories from the Spectrum poem by Chase Severin.
Stephen’s Place Positive community living for adults with developmental disabilities. To Disclose or Not to Disclose When is the right time to share an autism diagnosis?
Passion Projects How to engage your child creatively this summer. Transportation and Special Education Students What transportation rights do students have?
HEALTH + WELLNESS
Creating Visuals Instantly for Unpredictable Activities Help for when life gets hectic and spontaneity is in order.
Human Trafficking Protecting our most vulnerable from the unfathomable.
20 22 24
Autism on the Seas Autism-Friendly cruising for families. Seven Sensory Friendly Summer Activities Sensory Friendly fun in and out of the sun. That Great New Library Card Smell! Grandma takes her grandson to receive his first library card.
Realities of Being an Autistic Therapist Don’t let misconceptions fool you.
Upcoming Autism Empowerment Events Support Groups, Social Clubs and Special Events.
Provider Partner Directory Categorized listing of local autism-friendly providers.
FROM THE PUBLISHER
SUMMER 2017 | VOLUME 5, ISSUE 2 SPECTRUMS MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer Mailing address: Autism Empowerment P. O. Box 871676 • Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org email@example.com
On June 3rd, 2017, Autism Empowerment celebrated our 6th anniversary as a nonprofit. It has been quite a journey. Our original vision for the organization was detailed in multiple writing journals and centered around four foundational pillars of positivity: Accept, Enrich, Inspire and Empower. For me, it was a calling that centered around people - children, teens, and adults on the autism spectrum - and the families, professionals and loved ones who supported them.
Connect with us online!
Although Spectrums was not part of our original plan, sharing content through media was part of our vision. We underestimated the amount of work, time and cost it would take but the result is a brilliant vessel for connection, community, and empowerment.
Trying to be everything to everyone is an impossible undertaking. The divisiveness in our autism community makes it difficult to bring passionate people together respectfully to create an action plan for maximizing strengths and minimizing challenges. But try, we must.
One of my favorite pieces in this issue by John Elder Robison highlights many of the challenges that a divided autism community faces. We ask you to read, reflect and ask yourself, what can you do to contribute positively?
Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within the Autism and Asperger community.
Maybe it is advocating through writing like Chase Severin does in his poem, “We Know Who We Are”. Perhaps it is protecting our most vulnerable by describing the dangers of Human Trafficking. It could even be a community campus like Stephen’s Place where adults with developmental disabilities live purposefully and independently.
Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumsMagazine.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2017 All rights reserved.
Looking for Sensory Friendly summer fun? We’ve got you covered, but just in case the unexpected happens, we’ll teach you how to Create Visuals Instantly for Unpredictable Activities. Our cover story teaches about Passion Projects – a popular movement in the workplace, the classroom, and hopefully in your home too! When we bring passion and purpose together, we will do amazing things, individually and collectively. We look forward to seeing your Passion Projects!
ON OUR COVER
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrums Magazine™
Photo by Aaron Blackwelder
Thank you for being an Ambassador for Acceptance of All Abilities! Enjoy!
Ethan Blackwelder takes his knowledge for Pokémon to new heights with a Passion Project. Learn more on page 26.
A grassroots community magazine, Spectrums is a program of Autism Empowerment. With a mission of promoting a culture of acceptance, enrichment, inspiration and empowerment, these area professionals help guide the magazine’s future content providing expertise, insight and direction. We are honored to be partnering with some of the region’s finest self-advocates, professionals, parents and experts in the field of autism. AMY DONALDSON, Ph.D., CCC-SLP • Portland State University Autism & Child Language Disorders Laboratory asdchildlab.research.pdx.edu/home.html Amy L. Donaldson is an Assistant Professor in the Department of Speech & Hearing Sciences at Portland State University (PSU). Her research focuses on the assessment and intervention of social communication skills in children with Autism Spectrum Disorder (ASD) within the natural environment, as well as intervention efficacy. She is also Director of the Autism and Social Communication Lab. COURTNEY FREITAG • Founder and Former Publisher of Spectrums Magazine Courtney Freitag founded Spectrums Magazine in 2013 and continued publishing quarterly issues until the Autism Empowerment acquisition in 2016. Her experience in communications, graphic design, writing, editing and marketing spans 20 years, complemented by raising a son on the spectrum.
JOHN KREJCHA • Autism Empowerment www.autismempowerment.org John Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach and facilitates a monthly support group for dads. John was a Community Champion finalist at the Greater Vancouver Chamber of Commerce Business and Leadership Awards in 2014. John is married to co-founder, Karen, and is father to two amazing sons. All three are diagnosed on the autism spectrum.
Tara O’Gorman, MSW • SpectrAbilities www.spectrabilities.com Tara O’Gorman, MSW, is an independent consultant and advocate for individuals and families living with Autism Spectrum Disorders (ASD) and provides consulting for organizations working within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is a proud mom to two sons, including an Asperger’s teenager.
Heather Parrott • Parent Advocate Heather Parrott is married to Chris and is a homeschooling mom to Zachary, Ryan and Joshua. She became passionate about autism education when her oldest son was diagnosed with Asperger’s. She is a volunteer with Autism Empowerment and worked on the Autism and Scouting program. She enjoys writing, working with the Boy Scouts of America and watching her youngest play baseball.
BRIAN TASHIMA • The Joel Suzuki Series www.joelsuzuki.com Brian Tashima is the author of The Joel Suzuki Series, a young adult science fiction/fantasy series about a teenage guitarist on the autism spectrum who travels to a world where music is magic and autism is a superpower. The first book, Secret of the Songshell, was a finalist in the 2012 USA Best Book Awards for fantasy fiction. Mystery of the Moonfire was released in 2015. The third book, Legend of the Loudstone was released in April 2017. www.joelsuzuki.com www.spectrumsmagazine.org
advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
IN THIS SECTION Division in the Autism Community.........................................................8 “We Know Who We Are” - Stories from the Spectrum.............. 10
WORLD CONFERENCE & EXPO
PDD-NOS, ADHD, & OTHER RELATED DISORDERS
AUGUST 25-27, 2017
Sheraton Portland Airport Hotel
They Are Coming To Portland, August 25-27, 2017. This is the One Opportunity You Have to Meet With Them.
Over 30 of the world’s most respected researchers, practitioners, and education
specialists in the Autism and Asperger community come to Portland, Oregon to share valuable resources for your child, family member, patient, friend, student, or yourself. RAUN KAUFMAN
DR. STEPHEN SHORE
DR. PHILLIP DEMIO
DR. TEMPLE GRANDIN
DR. WILLIAM SHAW
Subject of an award-winning NBC television movie
World renowned professor of special education
Internationally recognized expert physician
Ranked one of the world’s most influential people
Award-winning educator, author, and self-advocate
Researcher of the biochemical basis of autism
“I'm a visual thinker, not a language-based thinker. My brain is like Google Images.”
DR. GIL TIPPY
Clinical Director and creator of academic programs
DR. L.P. KAPLAN
Chief investigator for the first study on early diagnosis
“What is so exciting today is that we have new tools that improve the function and well-being of our children that didn’t exist just a few years ago.”
The Conference is for Parents, Families, Caregivers, Adults with ASD and related disorders, Employers, Educators, Professionals, Agencies, Self-Advocates, and anyone who wants to learn more about ASD and related disorders.
Continuing Education is offered throughout the entire conference for all professionals including ASHA, NASW (Oregon), Oregon and Washington State Teachers and Educators (Clock Hours), and all other states in the U.S.
Plus, the Oregon Premiere of the award-winning film, Swim Team, Thursday evening, August 24
Check with your state or national associations to ensure CEUs are accepted by your organization.
US Autism & Asperger Association®
Packages start at $99* for a full 3 Day Conference Pass PRE-REGISTER NOW and SAVE at www.usautism.org
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www.spectrumsmagazine.org 7 *$99 conference pass with 2 or more people registering at the same time and with a Sheraton Portland Airport Hotel reservation.
in the Autism Community
What’s Next for Us? By John Elder Robison One of the greatest divisions in the autism community is between seekers of a cure, and opponents. Someone new to the autism community could easily be forgiven for asking how this might be. Autism is, after all, a disability. Why would anyone be opposed to curing it? Autism is not a disease. It’s a developmental difference that is part of us for life. In that way, autism might be compared to congenital blindness, deafness, or a missing limb. Those are other disabilities people generally live with for the rest of their lives. In the broader disability community, there are significant differences of opinion when it comes to assistive technologies. For example, some deaf people embrace cochlear implants while others reject the idea just as firmly. If there is one area of broad agreement, it is that the people with the disabilities should have the right to choose assistance or not. Nothing should be forced upon us. The past few years have seen widespread acceptance of the idea of self-determination which is a very good thing. That brings us to the autism controversy. Autism is – at its heart – a communication disorder. Autistics may have a different view of autism, but that is the centerpiece of the current definition. Some autistic people may be strong communicators and gifted thinkers, and their ability to chart their own course is beyond doubt. What about autistic people who are not able to communicate very successfully? There are some people in our community whose cognitive disabilities preclude effective communication and prevent self-advocacy. Autistic people with such severe disability are generally identified in early childhood. The response of parents has typically been to ask for help with their children. When faced with an autistic child many parents have reacted with distress, calling for a cure for autism and eradication of what they see as a terrible disability. Public awareness of autism has increased sharply in the past 20 years. We now have a generation of young adults who have grown to adulthood after being children those parents wanted so much to cure. Some are grateful for their parent’s’ advocacy, but many are angry. They reject what they see as harmful interventions forced on them by misguided parents, and they reject the concept that they needed to be cured. Those young adults have led the move to position autism as a civil rights issue. They believe most of our presumed disability is actually a mismatch between how we are and the expectations of modern western society. They
have done a great service by identifying instances of discrimination and marginalization. Alongside those advocates, there is a group of autistic people who take a very different position. They see autism as a disability, and they wish they could be rid of it. Finally, there are parents of autistic kids with very severe disability. As those kids grow to adulthood, the parents face hard choices – who will take care of my child when we are gone? They debate housing and support issues and often find themselves in conflict with autistic advocates with sharply opposing views. It’s very hard for members of the three groups to find common ground. People tend to see autism through the lens of personal experience. An autistic college student who has trouble with organization and social skills is likely to view autism very differently from a parent whose child is non-verbal, cognitively disabled, and self-injurious. The autistic lawyer or engineer who can say “I am autistic and proud to be different” is likely exhibiting a very different set of feelings from a more disabled autistic person who has never been able to hold a job or form satisfying relationships. It’s important to be mindful that both sets of feelings exist in the community. It’s as if people are seeing totally different conditions, and indeed some say the spectrum is too diverse for that reason. Yet the science shows that similar biological differences lie at the foundation of both forms of autism. While there is no one “autism gene,” many of the genes we have associated with autism tend to affect people at all points on the spectrum. Other genes – like those associated with Fragile X syndrome – tend to be associated with both autism and intellectual disability. Here’s where we stand with autism today: Parents have led the fight to get autism services into preschools and schools. Thanks to their advocacy most states cover some level of autism service. The range of services is still very limited, but the landscape is a far cry from the one I faced as a kid in the 1960s. Some parents opened a Pandora’s box when they asked where autism came from. When autism was first recognized in the 1930s, it was seen as idiopathic; in other words, there was no known cause. Parents had a hard time accepting that uncertainty; some began making associations between life events and the observed onset of of autistic symptoms. That led to some parents blaming vaccines for causing autism. Continued on next page
Today I see the vaccine issue as symbolic of a breakdown in trust in our public health authorities. The fact is, people need something to believe in. When medical science cannot provide good answers. pseudo-science and superstition take hold, with potentially disastrous results. Advocates call that out today, even as the science community has yet to provide satisfactory answers the public can understand. Science tells us that toxic metals can make people appear autistic. Injuries and disease can have similar effects. Do those causes account for most cases of autism? Most science says no, and the underlying cause for the rest remains unexplained except to say that autism appears to have been woven into the human genome for a very long time. For a number of years I have taken the position that it does not matter how we came to be autistic. What matters is what we do with our lives now. We can push for social accommodations, and we can encourage research to solve our medical problems. We can look for places to work and live that will be most comfortable. Advocates have made a powerful case for the employment and accommodation of autistic people. The emergent neurodiversity movement has made great strides in getting schools and employers to see the unique contributions autistic people make to society and the workplace. Self-advocates and parents are both active in calling out and fighting discrimination against autistic people. This is hugely important. Self-advocates, in particular, are speaking out against abuse of autistic people by caregivers. In some cases, those caregivers are hired help; other times they are family. We’ve seen conflict with parents who believe they are the best advocates and caregivers for their children. The fact is, severely disabled people are most likely to be abused by family members. That said, most family members are not abusers. Parents may see themselves as unfairly indicted while self-advocates point to the statistics and their undeniable truth. We should be mindful of the reality that statistics won’t tell us what happens in any particular home even as they advise us to be cautious. Advocates have pushed hard for self-determination. To that end, they have opposed guardianship and institutionalization of autistic people in group homes. They rightly say both lead to abuse. Parents respond that some children cannot make choices for themselves and that leads to a discussion
of whether that’s true, or whether the issue is parenting or communication failure, or simply imposing the parent’s will on the disabled person. Needless to say, emotions run high. Shame remains a huge problem in the autism community. Parents may be unable to accept the reality of their autistic child, and they may spend a lifetime in denial or misguided efforts to cure. Studies and life stories have shown us how destructive that can be yet the problem remains. Autistic people are harmed by growing up with the stigma of being broken or less than other children. Feelings of inferiority and poor self-image follow many of us well into adulthood. We’ve seen the emergence of a social model of autism that paints many of our challenges as a mismatch between ourselves and society. Some people now see autism as primarily a social issue, but social solutions are not all that’s needed for the more challenged members of our community. For those individuals the medical complications associated with autism are paramount. Recent studies have shown sharply reduced life expectancies for autistic adults. We live with a wide variety of real and challenging medical conditions like epilepsy, anxiety, and intestinal distress. For all the money we’ve spent on autism research this past decade, we’ve made precious little tangible progress on those fronts. In some discussions I see autistic advocates present the evolving social model of autism as “the correct understanding,” when in fact it complements but does not replace the medical model that has existed since the 1930s. The same is true for embracing the idea of neurodiversity. We mustn’t confuse the reality of disability for many of us with the fact that some of us have rare gifts too. Said another way, we should embrace our exceptionality but not deny that the suffering and challenges many of us feel are also very real. For a wide variety of reasons, it’s hard for individuals at various points on the autism spectrum to see and appreciate the positions of others in the community. Yet we must accomplish this if we wish to form a coherent group that can use the power of our numbers. The way we are today, outsiders see us advocating for so many disparate things that it’s hard to figure out what we – as a community – want. If we speak in one voice, we can ask for a range of things, and get them all. Individual voices, speaking alone, will continue to accomplish little. Rather than attack each other, our energies will be better spent building community and pushing legislators, insurance companies, and researchers to actually help solve our problems.
This article was originally published at www.jerobison.blogspot.com.
John Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Department of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (a school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Va., and a visiting professor of practice at Bay Path University in Longmeadow, Mass. Reach John at www.johnrobison.com www.spectrumsmagazine.org
STORIES from the SPECTRUM Autism from an Autistic perspective
We hear the whispers We know the jokes are about us We know people think we are stupid We know who we are We are smart, nice and we matter We are angry We know who we are Our Autism does not make us different We know who we are
Chase Severin is 14 years old and wrote this poem as a project for his 8th grade Humanities class. Chase lives in Vancouver, WA with his older brother, Robert Jr., younger sister, Tricia, and parents, Robert and Rhiannon. He enjoys video games, Dungeons & Dragons and making friends at Autism Empowerment's Teen & Tween Social Club (which he looks forward to every month). He has a 1st Degree Black Belt in Taekwondo and wants to be a video game designer.Â
lifespan ALL AGES AND ABILITIES
IN THIS SECTION Stephenâ€™s Place................................................................................................... 14 To Disclose or Not Disclose.......................................................................... 16
Stephen’s Place Family, Community, Home
By John Krejcha When first entering through the double doors at Stephen’s Place, visitors are met with an inviting reception area, a high vaulted ceiling with open beams and a view of a stunning living area complete with a brick fireplace. With spacious rooms, wide hallways and tall ceilings, it’s a warm, vibrant and inviting atmosphere for guests, staff, and the residents who call Stephen’s Place their home. Stephen’s Place is a supportive, not-for-profit Independent Apartment Community (IAC) in Vancouver, Wash., designed for adults with intellectual and developmental disabilities, so they may live a fulfilled life with meaning and dignity. The two-story building and campus has 41 units and currently houses 11 residents, including five women and six men between ages 22 and 62. Apartments are different sizes depending on each resident’s need. There are studios and one bedroom apartments with small to full kitchens. Each apartment has its own restroom with accessible
shower and a 24/7 monitoring system for independence and enhanced safety. Stephen’s Place is completely private pay. The rent residents pay is based on apartment size and also includes meals, utilities, programs and caring staff. Residents enjoy homemade daily meal services cooked by professional chefs who specialize in creating healthy delicious meals for those with dietary restrictions. Other amenities include a beautiful community dining area, a media and gaming room, gym, library, a private courtyard with screened-in porch and a custom-made greenhouse where residents participate in gardening and growing their own food. The first vision for this community residence happened over a decade ago, in 2005, when Wayne and Joan Kuni, founders of Kuni Automotive were considering semiindependent living options for their adult son with a developmental disability. They wanted their son to have community, independence and friends in a safe and supportive environment where he could live happily and age in place with support.
Their nationwide search brought them to an IAC called Casa De Amma in San Juan Capistrano, Calif. Although the living space was impressive, the community was already filled to capacity with a long waiting list. The idea of creating this type of community residence closer to their home in the Pacific Northwest seemed like a huge undertaking, but the Kunis knew that it would be life changing and transforming for families seeking a better life for their sons and daughters with developmental disabilities. In November 2005, the Kunis established the Wayne D. Kuni and Joan E. Kuni Foundation. The mission of this private foundation is twofold: to support medical research, especially for the diagnosis and treatment of cancer, and to support and enhance the lives of adults with developmental disabilities. Finding a safe, easily accessible, friendly neighborhood location convenient to Portland and downtown Vancouver took some time, but it was worth the wait. Their vision came true when the doors for Stephen’s Place opened in February 2015.
The community is named after one of the Kuni family sons, who passed away as a young adult. Their other son is living there today and has the honor of being the first founding resident. Heather Stenberg, Executive Director of Stephen’s Place, talks about the Independent Apartment Community (IAC) model. “An IAC is just as it sounds; a program that supports independence as much as possible. We have apartments where residents have privacy in their bedrooms and bathrooms and offer a community where residents aren’t isolated or alone. Each resident has a unique set of goals and a schedule which includes a wide range of activities as well as jobs and volunteering.” Stephen’s Place has 24-hour support including medical and is designed intentionally for residents to be able to age in place if they choose. Heather explains, “Our vision for Stephen’s Place is that each resident can live with us through the end of life. We understand there may be some instances where that goal is not realistic, but hope that our vision and goals for the growth of Stephen’s Place after we are full can provide solutions where Stephen’s Place still fully supports those residents.” Continued on next page
Stephen’s Place, continued from page 14
Heather was asked about some of the differences between other assisted living options and Stephen’s Place. She explained, “Many options provided to those in the Intellectual/Developmental Disabilities (I/DD) community are not as specific to the individual and don’t offer privacy in the living setting (e.g. sharing a bedroom or bathroom, no doors on rooms, etc.).” “What is many times considered the ideal for the I/DD population is to live in an apartment community among those who don’t have I/DD. In reality, this can be isolating and lonely for many. At Stephen’s Place, community represents having a peer group, social opportunities that provide the ability to naturally grow friendships, and support that can often be overlooked in the greater community. Our goal is to provide a home and individualized support to assist each resident to live their fullest life, and we believe in relationship-based care because this gives us a deeper understanding of each of our resident’s needs.” This is a feeling that the residents share as well. Ellen, a long-time resident, shares, “I like living at Stephen’s Place. My parents took good care of me, and now the staff does as well. I like playing cards with my friends here and all of the activities I can do.”
Heather explains, “We want to provide adults with developmental disabilities in our community the opportunity for additional friendships, peer relationships and access to community activities. This also gives families access to respite time while their loved ones participate in physical, social and creative activities. The people who take part in the day program can build off things that interest them, explore new opportunities and many times discover a new passion.” That also includes special events and gatherings hosted by local nonprofits and community groups. Heather shares, “Stephen’s Place was a gift to the community from the Kuni family, and it would be a shame not to share it with the whole community. We are all family here, and family opens up their home to other family members.” In December 2016, the Autism Serves Kids Care Club, a youth volunteerism program of local Vancouver-based nonprofit, Autism Empowerment (AE), participated in holiday caroling. In April 2017, Stephen’s Place became the new home for AE’s monthly support group for adults on the autism spectrum, and in May, AE’s Autism “Rocks” group hosted a communitywide rock painting party for residents and guests. Other groups use their conference room for meetings and on June 3rd, a Vancouver-based support group, Special Celebrations rolled out the red carpet with a fancy allabilities prom for teens and adults. “At the end of the day, the favorite programs for most of our residents are social opportunities to hang out with their peers, to talk about their days, and to enjoy each other’s company. It is comforting to see that the relationships that have developed grow and are not forced due to proximity.”
Another resident, Sandy shares, “I like to walk around and talk to my friends who live here. I like to do the gardening. I like it when people come and visit.” For both residents and staff, Stephen’s Place is more than just a housing option. Meal time is like sitting down with family. Liz expresses, “I feel so loved! I have friends, and it’s safe.” She is good friends with Michael, another long-time resident who adds, “I am happier than I was at my own home. This is a great place to live if you want to be independent.” Stephen’s Place provides very intentional programming for their residents which allows them to experience independence in a dynamic way. Each resident goes through a person-centered planning process which includes personalized plans for Fitness & Movement, Music & Creative, Life Skills, Job Coaching and Volunteer Opportunities. Stephen’s Place also has a comprehensive, full-day program available for residents and non-resident guests to attend each Monday and Thursday. The day program was started originally for the residents but has been opened up for other local adults with developmental disabilities to attend for a nominal fee.
There are many plans for the future as well. Heather shares, “We have lots of ideas but nothing written in stone yet. We have talked about building a trail on the property, maybe independent cottages for even greater independence or a separate activities building. As our community grows, we will see what their needs are and try to match those needs.” The sense of home is something that can be seen and felt when you first walk through the doors. It doesn’t matter if you are a resident, staff member, day program participant or an organization partner, one thing is for sure, you are family. Stephen’s Place is currently accepting new resident applications and welcomes prospective families to take a tour. Regarding growth, Heather explains, “The intention is to add residents slowly. We know when you add somebody new, it will change the dynamics of the group. By adding people slowly, we can help each of the current residents with that transition. We want each person to be part of the community and part of the Stephen’s Place family.” For the privacy of Stephen’s Place residents, some names have been changed.
To learn more about Stephen’s Place or to schedule a tour: Visit us online: www.stephensplace.org Visit us in-person: 501 SE Ellsworth Road, Vancouver, WA 98684 Call us: (360) 984-3600 www.spectrumsmagazine.org
To Disclose or Not To Disclose That is the Question By Karen Krejcha In the computer security world, full disclosure requires that complete details of any vulnerability in the computer systems are disclosed to the public, including how to detect and exploit them. Fortunately, we don’t need to give that kind of “full disclosure” when we talk about our autism spectrum diagnosis. Fear of rejection is tough enough. No one should be exploited. The truth is, when a person discloses their diagnosis, experiences vary. Sometimes the process of disclosing goes very well and relationships improve, allowing for stronger advocacy, improved support and greater mutual respect. Occasionally a relationship ends abruptly. When that pertains to family relationships, friendship, romance or employment, it can be devastating… even illegal if your employer uses it to discriminate. More frequently, the impact of disclosure is revealed gradually as both parties take the time to process what this disclosure means to them and their relationship. An intricate never-been-done-before survey for adults with Asperger’s or a similar type autism spectrum profile was constructed by Craig R. Evans and administered online between January 17th, 2012 and March 19th, 2013. Those surveyed were asked questions about what issues related to autism provided them with the most stress and to what measure that stress impacted their lives. The top 17 stressors and mentoring advice for ways to cope were published in Been There, Done That, Try This: An Aspie’s Guide to Life on Earth (Attwood, T., Evans, C. R., & Lesko, A., 2014.). In the original survey, 322 autistic adults responded with 73% of respondents feeling measurable stress when it came to determining when it’s right to tell others that they’re on the autism spectrum. On a scale of 1 to 100% with 1 being no stress and 100 being extremely high stress, the average stress level recorded for this issue was 79%. It is no surprise that the majority of adults had difficulty determining when (and if) it’s right to tell others they’re on the spectrum. Questions commonly asked are, “Should I disclose my diagnosis during an interview?”, “Is it okay to wait until after the first date?”, “What details should I give my college professor?” and “If I’ve been diagnosed later in life, do others really need to know?” When considering disclosure to and for children and teens on the spectrum, the questions also become complex. Parents ask questions like, “When and how do I tell my children?”, “Should I tell my student’s classmates?” and “What if I want my child to be able to decide for him/herself when to disclose?”
Each question is significant. Because the way autism affects each person is unique to their life circumstances, there isn’t any one golden answer that will fit all people in all circumstances. That being said, here are some thoughts to consider when this challenge pertains to you or someone you love: When is it obvious you’re the apple in a group of oranges? In Been There, Done That, Try This, Dr. Tony Attwood, a clinical psychologist with over 30 years of experience working with individuals on the autism spectrum shares food for thought. “Sometimes the characteristics of ASD are conspicuous, such that a neurotypical may be confused and seek an explanation of certain unusual behaviors or reactions.” (2014, p. 239) What is usual to your life to help you or your child regulate or cope, may seem different to others. Unusual behaviors or reactions might look like wearing noisecancelling headphones or tinted glasses inside when it’s too noisy, or the fluorescent lights are too bright. It could also look like rocking, humming, pacing or not making eye contact when spoken to. Perhaps it’s the tendency to talk about the same subject well beyond the point that others are interested. Recognizing this, there are multiple choices: • You could choose not to disclose, which is often fine if you’re at a public place with strangers or casual acquaintances you don’t have much interaction with. • You could disclose selectively or situationally, without mentioning the diagnosis. For example, “Why am I wearing sunglasses inside? I’m the type of person who tends to get headaches when lights are really bright and I’m not feeling well today.” or “If I’m not looking at you when you’re talking, no offense is intended. Interestingly enough, for me, I concentrate better on what you’re saying if I look away.” • You could also explain openly that you happen to be Autistic/Aspie/diagnosed on the autism spectrum (always your choice of wording). For you, that might mean that you sometimes miss social cues, you’re selective about your food choices, you prefer email to phone calls or whatever characteristics that describe you that you feel comfortable sharing then. If you are a parent, talking about your son or daughter, you can modify responses to these choices to be appropriate and respectful to your child’s age and ability level. Although kids are often accepting of other Continued on next page
To Disclose or Not Disclose, continued from page 16
children’s differences, they are often confused about unusual behaviors and can be quite direct when asking why someone is acting a certain way. Once they have an answer that makes sense to them, it’s an opportunity to turn a curious child into an ally. We all need those! Teenagers, particularly those who are more reserved or easily embarrassed, may not be ready to talk about their diagnosis for fear of being ostracized or bullied by intolerant adolescents. Working with them on practicing strategies or short scripts to explain their sensory issues or learning challenges in a conversational way often helps reduce anxiety, and as a bonus, it allows them to practice self-advocacy skills which they’ll need to utilize in higher education, employment and strengthening relationships. Practice, Practice, Practice! When disclosing something as personal and important as your diagnosis or characteristics thereof, it makes sense to practice the information you share, particularly if you are the kind of person who has challenges getting what is in your head out of your mouth in an understandable way. • Take time to assess your thoughts and feelings about being autistic. If you are at a point where you comprehend and are accepting of the differences which make you unique, it is easier to talk authentically and helps others respect and understand you. • Not sure what to say? Write it out. Read it aloud. Did you convey what you intended? Too much information?
Not enough? If so, edit and try again, noting that the content and amount of information you share will vary by person and situation. • Role-play your disclosure. If you have friends or relatives on the spectrum, try it with them first. Then try separately with someone who is not autistic. Ask each person to react to you in different ways, both positively and negatively. Ask for their feedback afterward. • Timing is very important. Try not to disclose during an argument and be aware of the mood of the people with whom you are talking. (Easier said than done, right?) Pick a neutral or positive time to share. • After disclosing, realize that no matter what the result, your act of sharing was one of advocacy and courage. Give yourself credit. There are times when you are better served by sharing your diagnosis, particularly with health care professionals, educators, first responders and key family members. There are other times when no-one needs to know, like when you’re meeting someone briefly and are unlikely to see them again. In the end, the decision on what, when, why, how and what to disclose is a personal one. Perhaps you want to blaze a trail of advocacy for the autistic youth of today. Perhaps you’re content with where you’re at. In either case, it’s your journey, and when it’s time for you to share, you have an Autism Empowerment community here to meet you along the way.
References: Attwood, T., Evans, C. R., & Lesko, A. (2014). Been There, Done That--Try This!: An Aspie’s Guide to Life on Earth. London: Jessica Kingsley www.spectrumsmagazine.org
recreation INCLUSIVE WAYS TO HAVE FUN
IN THIS SECTION Autism on the Seas.............................................................................. 20 7 Sensory Friendly Summer Activities.................................... 22 That Great New-Library-Card-Smell!........................................ 24
Autism on the Seas Where Vacations Come True By Heather Parrott In December of 2016, our family went on an eight-night cruise through the western Caribbean. We toured a plantation in Jamaica, saw sea turtles in Grand Cayman, visited the ruins in Costa Maya, and swam with manatees in Cozumel. We had such an amazing time we decided we wanted to do it again. Before booking this year’s cruise, I contacted my friend Jenny Hickey, a travel agent with Travel Time. I told her we wanted to cruise with Royal Caribbean to the eastern Caribbean this year. She informed me she wasn’t familiar with booking on Royal Caribbean, but she would do the necessary research and complete the necessary certifications. I was not sure what kind of certifications one might need for booking a cruise. I quickly found out that one was for a program that would be a great find:
Autism on the Seas Autism on the Seas (AotS) started in 2007 as a collaboration with Royal Caribbean to provide cruise vacations to families with special needs, including autism and Asperger’s syndrome. They provide a free Cruise Assistance Package for
those wishing to cruise on their own, and staffed cruises on Royal Caribbean, Norwegian, Carnival, and Disney Cruise Line. Both of these options offer guidance, support, and assistance to help make a cruise vacation a reality for families who have youth or adults with special health care needs. Along with helping you book either a staffed cruise or a cruise on your own, AotS provides helpful resources in preparation for your cruise. Both programs will allow you access to AotS guidance and support, the AotS Community Network, cruise information, specialized tips for traveling, and shore excursion reviews. You will also be asked to fill out a questionnaire to help the ship’s staff better prepare for your cruise. A special cruise social story and cruise PECS (Picture Exchange Communication System) cards are also available.
For some families, a staffed cruise may offer the only opportunity for a cruise vacation. AotS staffed cruises are selected from scheduled cruises on the aforementioned cruise lines. Staff is available for support for adults and children for $15-$25 per day (although some non-Royal Caribbean cruises can be as much as $60 per day). Each Continued on next page
Autism on the Seas, continued from page 20 staff member has a degree in child development, special education, sociology, psychology, etc., is fully background checked, and has experience caring for children and adults with special health needs. There is a 1:3 ratio of staff to guest, although 1:1 staff support is available for an extra fee. AotS staff works together with the cruise staff to help make the vacation a success. The list of support on a staffed cruise is extensive. Support begins with expedited check-in at embarkation, a private muster (safety) drill, and a private information session with each family. During the cruise, staff assists during pool time and other onboard activities. Respite time is built-in to each day, allowing parents the opportunity to relax and reconnect while their children are in the care of AotS staff. Meal times are staff assisted, as well, and the dress code for the dining room is relaxed. Dietary needs can be met with proper notice. Private family portrait sessions are available, as well as reserved seats to onboard shows. Staff assisted beach excursions are available in port, and staff is available to accompany families on their private excursions. Private character meet and greets will be arranged, if that is an option on your vacation. Staff-assisted private disembarkation will conclude your cruise vacation. Staffed cruises offer much in the way of onboard awareness, as well. Staff members wear orange shirts bearing the AotS logo. There is AotS signage onboard and magnets on cabin doors. Special name tags, lanyards, luggage tags, and daily schedules are given to participants, along with “If I Need Help” cards. AotS will have a display with information, and cards for disability assistance and autism awareness will be available.
I also spent some time reading posts on the Autism on the Seas Community Facebook page. Several families have gone on more than one cruise with “Team Orange,” which refers to the staff’s orange shirts. I saw pictures of excited children, relaxed parents, and happy staff on cruises and excursions. I read through questions and saw a community of people come together to answer or give their personal experience. It seems that AotS is a unique community. If you are looking for a vacation where you can see new places and try new things without having to stay in multiple places, a cruise is the way to go. You can unpack once yet have many different experiences. The services provided by AotS can make a dream cruise vacation a reality for families in the autism community and with other special health care needs. If you are interested in booking a staffed cruise or taking advantage of the Cruise Assistance Package, please visit the AotS website at www.autismontheseas.com. There you will find a video, an interactive brochure for staffed cruises, and detailed explanation of all the services provided by AotS. There is information about payment plans and financial assistance for a cruise vacation, as well. To receive a free $25 Onboard Credit, use Discount Code ND-159 when booking your cruise and Autism on the Seas will also make a donation on your behalf to Autism Empowerment. (Applies to new guests of AotS only.)
If a family isn’t able to travel on one of the staffed cruises, or if they feel their family doesn’t need the level of support of a staffed cruise, AotS offers a free Cruise Assistance Package when a cruise is booked through them or an already booked cruise is transferred to them. Along with pre-cruise information and support, this package offers onboard assistance, as well. Families will be given priority check-in onto the ship and priority disembarkation at the end of the cruise. Nametags and autism awareness cards will be given to families to help on the cruise. During meal times, families can be assigned small tables in the main dining room for all meals or choose “My Time Dining” on some ships for more flexibility. Dietary accommodations can be made with proper notice, and families are allowed to bring gluten-free/casein-free foods onboard in original, sealed containers. Private areas for the safety drill and modified drills are available. Special gifts, special grouping rules in the children’s clubs, and special toilet training provisions are all in place with this program. After Jenny had told me about AotS, I connected with family friends who had a fantastic experience with this amazing program. Karen Krejcha from Vancouver, Wash. shared, “Our family utilized Autism on the Seas free Cruise Assistance Package during a Carnival Cruise from Seattle to Alaska in 2012. The priority embarkation and disembarkation at the beginning and the end saved our family hours of waiting time. Our two sons (6 and 13-years old at the time) had the best vacation of their lives, and due to AotS services, my husband and I did too!”
Heather Parrott is married to Chris and is a homeschooling mom to Zachary, Ryan and Joshua. She became passionate about autism education when her oldest son was diagnosed with Asperger’s. She is a volunteer with Autism Empowerment serving on Spectrums Magazine Editorial Advisory Board and the Autism and Scouting program. She enjoys writing, working with the Boy Scouts of America and watching her youngest son play baseball.
Sensory Friendly Summer Activities Fun in and out of the Sun By John Krejcha
When summer arrives, there is a change in routine for youth and families. Although our region is rich with summertime activity options, crowds, lines, noise, heat, and unpredictability often heighten the stress load for youth and adults on the autism spectrum. Finding the right balance of summertime activities can be a challenge when taking into consideration sensory needs. We have put together a guide of fun activities in the Portland metro and southwest WA area that welcome the autism community. Let us know which are your favorites! #1 Sensory Friendly Movies Two movie theaters in our region offer sensory friendly movies on a monthly basis.
The Regal Bridgeport Village Stadium 18 in Tigard offers first run movies on a rolling basis the day after they are released with a sensory friendly showing. Please contact them for dates and times. Regal Bridgeport Village Stadium 18 7329 SW Bridgeport Rd, Tigard, OR, 97224 (844) 462-7342 ext 1728 www.regmovies.com/theaters/regal-bridgeport-villagestadium-18-imax/9675 Regal Vancouver Plaza 10 in Vancouver has partnered with Autism Empowerment to offer a sensory movie at 10:30 am on the first Saturday of each month. Starting at 10 am, there will be sensory friendly activities and resources available. Before the movie and afterward, we also offer free Autism “Rocks” rock painting. Come to the movies and go away with a great memory and a painted autism rock to keep or hide. Please contact the theater to find out monthly movie showings. Regal Vancouver Plaza 10 7800 NE 4th Plain Rd, Vancouver, WA 98662 (844) 462-7342 ext 433 www.regmovies.com/theaters/ regal-vancouver-plaza-10/3016
#2 Sensory Gym Play
There are two gyms in the Portland metro area that offer sensory gym time and one open play group that offers gym time in an inclusive atmosphere.
The Children’s Gym sets aside time each week for their Sensory Open Gym program, a parent participation open gym experience. During this time, their gym is dedicated to providing a fun and safe space for children ages 2 to 14 who experience Autism Spectrum Disorders, ADHD, or who have special sensory needs. The entire facility is set aside so that attendees can run, jump, swing, and climb on their equipment in a calm and comfortable setting. Typically developing siblings and friends are also welcome to attend Sensory Open Gym. This program is available each Tuesday and Thursday from 3:20-4:20 pm and each Saturday from 1:15-2:15 pm. The cost for non-members is $10.00 for the first child and $5.00 for each additional. For members, the cost is $5.00 per for the first child and $3.00 for each additional. Please contact them if cost is a barrier. The Children’s Gym 1625 NE Sandy Blvd, Portland, OR 97232 (503) 249-5867, www.childrensgym.com Spectra Gymnastics is the only exclusively special needs gymnastics program in Oregon and is carefully designed to support children and teens with Autism and related disorders. They offer an all inclusive open gym time every Saturday from 9:00 am-12:00 pm and the cost is $5.00 per child. Spectra Gymnastics 8344 SW Nimbus Ave., Beaverton, OR 97008 (503) 754-9794, www.spectrapdx.com Club Upside meets the second Saturday of each month from 2:00-4:00 pm at St. Andrew’s Lutheran Church in Vancouver and is for all ages and abilities. Kids play. Parents share. Gym activities are available. Club Upside at St. Andrew’s Lutheran Church 5607 NE Gher Rd, Vancouver, WA 98662 Contact Brenda Tyrrell at (360) 953-1597 for more information.
#3 Sensory Jump Times and Flights There are two Portland/Vancouver area trampoline parks that offer sensory friendly jump times during the summer for those who want to jump and get some extra energy out of their systems. G6 Airpark offers a “Special Needs Jump” each Tuesday from 3:00-5:00 pm at their Portland and Vancouver gym parks. The cost is $5.00 per hour per jumper. Caregivers who are 18 or older jump for free. Continued on next page www.spectrumsmagazine.org
7 Sensory Friendly Summer Activities, continued from page 22 G6 Airpark 10414 SE Washington St., Portland, OR 97216 and 2200 NE Andresen Rd, Vancouver, WA 98661 (503) 255-3334 and (360) 828-1444, www.g6airpark.com Sky High Sports offers a “Special Needs Tuesday” each Tuesday during the summer from 3:00-6:00 pm. They will turn down the music, dim the lights and reduce the distractions. The cost is $6 per hour, and one parent or therapist jumps for free. Sky High Sports 11131 Southwest Greenburg Rd., Tigard, OR 97223 (503) 924-5867, www.skyhighsports.com From time to time iFly offers an All Abilities Night. This is a chance that makes the dream of flight a reality for those in those with special health care needs. The program has been custom designed for those with physical and cognitive challenges to create an environment of support and inclusion while focusing on making what seems impossible, possible. iFly 10645 SW Greenburg Rd, Tigard, OR 97223 (971) 803-4359,www.iflyworld.com/portland
#4 Library Time Libraries by their nature are sensory friendly. It doesn’t matter if you are in Beaverton, Gresham, Longview or Vancouver, each library district offers a wide variety of summer programs to help make learning and reading fun. Since 2006 the Multnomah County Library has offered a “Preschool Sensory Storytime” welcoming for children on the spectrum and families who are looking for a smaller, more adaptive experience. www.multcolib.org/events/preschool-sensory-storytime Libraries of Oregon - https://librariesoforegon.org Southwest Washington (all locations) - www.fvrl.org
#5 Social Clubs and Celebrations
Special Celebrations, a community group based in Vancouver is hosting many sensory friendly events over the summer. The second and the fourth Thursday of July and August, they will be having themed Backyard Socials. A Talent Show and Art Exhibit will take place on Saturday, August 5th. Special Celebrations www.facebook.com/groups/specialcelebrations There are two game clubs you may want to check out over the summer. Autism Empowerment Tween and Teen Social Club for ages 11 - 19 will be meeting on Saturday, July 15th and Saturday, September 16th. (No August gathering.) Tweens and teens are invited to a monthly social and game club. Parents
stay on the premises and are invited to join a parent support group in the parent room. See website for more details. Meets at The Arc Family Center 6511 NE 18th St. Vancouver, WA 98661 Contact Tara O’Gorman at (941) 322-4229 or Tara O @autismempowerment.org bit.ly/aetweenteen West Linn Game Club is held the second Friday of each month (except December) from 6:30-10:00 pm and meets at the West Linn Lutheran Church. West Linn Lutheran Church 20390 Willamette Drive, West Linn, OR www.pdxaspergers.org/category/events/game_club
# 6 Portland Children’s Museum Family Access
Portland Children’s Museum invites families with children experiencing disabilities to visit the Museum during their regular operating hours as well as their monthly Access Play events. These low sensory play times are calmer, less crowded, and a great way to habituate your child to the Museum’s exhibits under minimal stress. In partnership with FACT, Autism Society of Oregon, Swindells Resource Center and others, the Museum is pleased to offer Access Play as an event reserved for families with children experiencing disabilities and their friends. Play times are the third Tuesday of each month from 5:30 -7:30 pm
Portland Children’s Museum 4105 SW Canyon Rd., Portland, OR 97221 (503) 223-6500, www.portlandcm.org
#7 Outdoor Adventure Living in the Northwest provides a plethora of affordable options when it comes to accessing the great outdoors right where we live. It could be a hike down a trail that ends at a waterfall, a swim at Klineline Park pond, a bike ride around Mt. Tabor Park or a stroll around Blue Lake in Fairfield. Parks in the Portland area: www.portlandoregon.gov/parks/finder/ Parks in the Vancouver area: www.clark.wa.gov/public-works/parks-and-trails If you’ve never been to Harper’s Playground at Arbor Lodge Park, it’s worth a visit. This fully inclusive playground provides full access to play for kids of all abilities. Arbor Lodge Park 2525 N. Dekum St., Portland, OR 97217 www.harpersplayground.org Do you have a sensory friendly summer resource to contribute? Send the details to: firstname.lastname@example.org www.spectrumsmagazine.org
That Great New-Library-Card-Smell!
By Kay Richardson
Is there anything like that smell? It was library day for grandson Hunter and me. We try to (and usually do) go to the library every other Wednesday. Our outstanding central library building is simply a wonderment of design, information and imagination. We look forward to our library visits for different reasons, but none less important than the time we spend together in appreciation of those attributes. His first intent always is to visit the DVD section to see if there are any new train videos he hasn’t seen yet. (Hey, whoever is producing those, keep it up!) I decided it was time for Hunter to have his own library card. All these years we’ve been doing this, I’ve been checking out his materials with my card, which is okay, but I wanted him to have his own card. I’m not sure what kind of reaction I expected from this. But the process was exciting to me. The librarian was nearly as excited as I was when I made the request. As I filled out the necessary paperwork, she told me she wanted to give him the usual schtick she gives all kids receiving their library card. Ok, I told her, but he has a bit of autism going on, and I can’t guarantee you’ll get any eye contact or reassurance he knows what
you’re talking about. He probably will get it, but you, yourself, just might not know that for sure. So I corralled him from the DVD section for the orientation. The young woman behind the desk could scarcely hide her exuberance. It took about 28 seconds: “Hi, Hunter! This is your very OWN library card! Now, it’s important you keep it in a safe place and always bring it with you when you come to the library because if you want to check out books, you can’t if you don’t have it. So, now, would you sign the back?” What Hunter probably heard: “Hi, Hunter! This is your ........blah blah blah...........sign the back.” He eagerly signed the card because it was a really cool Sharpie pen, but needed help spelling his last name. Then as quickly as he came, he was trotting toward the stairway to heaven, er, the children’s floor where all the cool hands-on stuff (meant for 0-5-year-olds) is. I collected the card, smiled and thanked the librarian and her mistyeyed assistants standing nearby.
Kay Richardson is a Clark County native and proud grandmother of five. You can often see her with her grandson, Hunter, at Autism Empowerment-sponsored activities, as well as Special Celebrations. She works in the newsroom at The Columbian and in her spare time enjoys sewing, hiking and gardening.
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IN THIS SECTION Passion Projects...................................................................................... 28 Transportation and Special Education Students................ 30
Photo courtesy of Blackwelder family
KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
Can research really change the future of autism? You can SPARK research with one click.
Join SPARK – a free study with a simple mission: speed up research and advance understanding of autism. Individuals with autism will receive gift cards valued at up to a total of $50 for participation. To learn more about SPARK and register online, visit www.SPARKforAutism.org/OHSU
503-974-6478 | SPARK@ohsu.edu SPARK: Simons Foundation Powering Autism Research for Knowledge
©2016 Simons Foundation
SPARK Primary Investigator: Wendy Chung, MD, PhD • Protocol Number: 20151664 • Western Institutional Review Board
How to Engage Your Child This Summer
By Aaron Blackwelder
As school begins to wind down, my wife and I (like many parents) scramble to figure out how to keep our boys engaged in learning over summer rather than allow them to zone out in front of screens all day. Granted, our boys will spend an exorbitant amount of time gazing into the mesmerizing, soft glow of computer, Nintendo DS, iPod, and television screens, but we do what we can to foster learning, engagement, and responsibility during the summer months. Passion Projects A movement that began in software companies like Google has recently leaked into the classroom. However, this trend does not have to be limited to the classroom or workplace. Something this powerful can be introduced easily into the home. A Passion Project is an activity that caters to the individual’s interests. It involves research, planning, and creating. It can be anything so long as it draws from personal interest. In his book Drive: The Surprising Truth About What Motivates Us, Daniel Pink suggests people are driven by three key components: • Autonomy - The ability to govern oneself. • Mastery - The path to get better at something. • Purpose - To develop a transcendent meaning to something. When all three are satisfied, people feel empowered to be creative (2009).
Current Passion Projects some of my students are developing are: • A website with student-written articles highlighting our school’s sports teams. • YouTube channel on favorite books. • Writing a personal blog on the student’s perspective of current events. • Creating a board game on a favorite book, movie, video game, etc. • Developing a new series of characters for a favorite show, game, or movie. Find out your children’s interests. Encourage them to develop those ideas. Challenge them to take risks and make mistakes. This project should be about getting in touch with personal interests to create something. It is about growth and learning. It can be shared with family and close friends or it can be published globally via the internet. My oldest son recently completed a Passion Project for school (his teacher called it a Genius Hour Project) on the history of Pokémon. He had so much fun and it never turned into fights to get him to work on it. This summer, he plans to take his love for the game and create his own YouTube channel where he can share his knowledge of Pokémon.
Photo courtesy of Blackwelder family
In her book, SHIFT THIS!, Joy Kirr describes them as “authentic, student-driven, and inquiry-driven... (and) helps cultivate lifelong learners” (2017). Passion Projects can help your child learn how to learn and potentially pave the path to an exciting career or long-term hobby. Based on this idea, Passion Projects are taking center stage in work and school. This year, I introduced Passion Projects to my students, and they have quickly become an addition my students love. This summer, I plan to have our family engage in our own Passion Projects.
Passion Projects, continued from page 28
As for my youngest, my wife and I are planning to get him a puppy. We are going to set up a blog space so he can journal his summer. We want to see him share how he learns to take responsibility for a dog. We plan to share his blog with family and friends. Ultimately, the purpose is to create something personal and meaningful while learning something new. It doesn’t have to be done online. It can be done at home in posters, projects, or crafts. It can be a lemonade stand or painting rocks. The sky is the limit. I recommend adults, parents and extended family members join the fun and create their own Passion Projects. Share them with your children or peers, talk about them over meals, and encourage one another along the way. Discuss where you are in the process and talk about setbacks, challenges, and accomplishments. I plan to take the time to become a Google Certified Teacher. My wife is looking forward to some gardening and designing a She Shed in our backyard. Making it a family endeavor models the importance of Passion Projects and can give families something to talk about. Summer activities don’t have to cost a lot of money. A little creativity and scheduling can make the time worthwhile for everyone.
If you want more information or ideas on Passion Projects visit the following websites:
• www.lifelessonlearning.com/passion-projects • www.geniushour.com • www.geniushourfair.com
Aaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He is married and the father of two boys with Autism who have shaped him as an educator. He is passionate about creating learning environments for all students. In his free time, he writes his blog “Thinking 101” where he shares his ideas about education. Visit: mrblackwelder.wordpress.com Works cited: Kirr, Joy, SHIFT THIS!: How to Implement Gradual Changes for Massive Impact in Your Classroom. San Diego: Dave Burgess Consulting, Inc., 2017. Print. Pink, Daniel H., Drive: The Surprising Truth about What Motivates Us. New York: Riverhead, 2009. Print.
Photo courtesy of Bell Studios
Finally, we want to see and hear about the Passion Projects you and your family have worked on this summer. Please share your Projects with us at email@example.com or www.facebook.com/spectrumsmagazine and we may feature your project on our website or in a future issue of Spectrums. If we get enough response, we’d like to share Passion Projects each issue!
Transportation and Special Education Students What rights do students have? By Diane Wiscarson, Attorney at Law School transportation is frequently a source of confusion, and even frustration, for students with Individual Education Programs (IEPs) and their families. When does the district have to provide transportation? Who decides how and when transportation occurs? Is transportation on my child’s IEP? How do I know what my rights are for my child’s transportation? Can my child have an aide on the bus? These are a few questions that come up every year before school starts, and for summer services.
Reimbursement in Lieu The district does not get to choose the parent’s car as the student’s transportation. Parents sometimes prefer to provide transportation for their child. In that case, mileage reimbursement is a great option. Districts use the GSA federal transportation rate, which is set yearly and is currently $0.535 per mile. Most districts have a specific mileage reimbursement form for parents to use, and the reimbursement covers round trips to/from school.
Under the Individual with Disabilities Education Act (IDEA) transportation “as may be required to assist a child with a disability to benefit from special education” is a related service to be discussed at an IEP meeting. Transportation includes travel to/from school, travel between schools, and travel in and around school buildings. This article focuses on travel to/from school, and your child’s right to transportation.
Least Restrictive Environment (LRE)
Transportation decisions are made at IEP meetings on an individual basis. If a student with an IEP cannot get to/ from school the same way as non-disabled students for a disability-related reason, then the district must provide transportation for the student. This generally means door-to-door transportation, both ways, between home and school. If the student needs transportation to benefit from education, the district supplies that transportation.
Aides or Other Adults on the Bus
Types of Transportation
The concept of LRE refers to a child’s access to the general education curriculum and general education peers. LRE applies to transportation too! If a child can be successful on a general education bus, even if needed supports have to be provided, then the child need not ride to/from school on a special education bus.
Aides are often needed to support students during transportation. An aide may be needed to facilitate communication, monitor medical conditions, ensure safety, manage disruptive behaviors, or help teach or practice a new skill a student is learning related to transportation to/from school. Also, if a child has the support of a nurse while at school, then a nurse is likely also needed during transport.
Once the decision has been made by an IEP team that the child needs transportation, school districts choose the type of vehicle to transport the student. There are a variety of vehicles that a district could use - school buses, whether long or short, taxi cabs, mini-buses, vans, or in a rare circumstance, even a privately-owned car.
These decisions must be made by an IEP team. If an adult will accompany a student on the bus or other form of transportation, then the additional support must be listed specifically on the child’s IEP.
Districts can contract with an outside provider for a student’s transportation, but that does not transfer the transportation obligation to the contracting agency. The responsibility for transportation remains with the district. Although the district must consider any parent input related to a child’s transportation, there is no requirement that a district transport a child via the parent’s preferred method.
When a child needs additional equipment or accommodations for transportation, those items or adjustments must also be provided by the district. Accommodations could include specific temperature requirements or alternate bus routes. Equipment might be a harness, a lift, restraints, a seat-belt, a car seat, phones or walkie-talkies, or a ramp.
Continued on next page
Transportation, continued from page 30 Districts must provide whatever is required to safely transport a student to/from school, even if inconvenient or expensive.
leaving the school with all students on board before the dismissal bell ever rings. Is this legal? The answer depends on the reason the students are leaving school early.
For a student who needs extra time to transition to the bus after school, or a student whose anxiety or sensory needs are aggravated by all the activity in the school halls, more transition time is a great accommodation. This extra time accommodation should be documented on the child’s IEP and implemented to serve the child’s needs.
When a district offers transportation for extracurricular activities for general education students, the district must offer transportation to the same activities for special education students. This is true even if the transportation will require the district to use a special education bus, or employ another method of transportation such as a taxi cab or provide mileage reimbursement to parents if the parents choose to drive the child to the activity. Again, transportation must be listed on the child’s IEP as an accommodation. Then, that accommodation should extend to all school activities requiring transportation. This would include outings like field trips, sports events, outdoor school, work or internship opportunities, and community activities or service. Not my Neighborhood School Not all special education services are available at all schools, so districts sometimes “regionalize” services and programs. This means that children with specific needs not served at their neighborhood schools might be bused to a different school, outside of their neighborhood, to receive required special education services. When a child will attend a school other than his or her neighborhood school, the transportation is generally a special education bus, but any transportation option could be utilized, at the district’s discretion. Thus, some children also travel to schools at district expense via taxi cab or secure transport.
All too often, however, “self-contained” classroom students are ALL dismissed before the bell, and special education buses depart before the rest of the students are dismissed from school. Unless there is a child-specific reason for this, the United States Office of Civil Rights (OCR) has determined this to be an illegal practice by districts. It discriminates against students with disabilities by costing them instruction time, social passing time, and the regular experience of school. If your child is leaving the classroom before the last bell, carefully investigate the reason why to determine if this is something your child needs. If it is, make sure it is on the IEP, and if it isn’t, ask that the practice stops immediately, or consult with OCR. OCR for the region is located in Seattle, and you can review OCR policies and other information at http://www.seattle.gov/civilrights/. Summary If you have concerns or questions about transportation, be sure to discuss those issues at your child’s IEP meeting. Once that discussion has occurred, make sure all transportation arrangements are specifically documented on your child’s IEP.
Here also, mileage reimbursement to the family is likely an option that could be discussed with the district. Parents sometimes choose this option to spend more time with their child, or because of personal preference. However, in all circumstances, this is a parent choice and cannot be required by the district. Can my Other Children Ride the Special Education Bus Too? If your child is riding a special education bus, then the answer depends on the district. For example, Portland Public Schools has a “hitcher” policy which allows siblings to ride to school on the special education bus if there is space available. Other districts have a strict policy that prohibits siblings from riding on the special education bus. This is a matter very specific to the particular district in which you reside. Check with your school district to find out what their policy is, and then follow any request policies if this is an option that might work well for your family. Special Education Buses Leaving School Early Frequently, special education students are dismissed early from classes, and the special education buses are seen
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 helped thousands of Oregon and Washington families obtain appropriate services and placements for their special needs children in public schools and education service districts in both states. For more information call 503.727.0202, or go to www.wiscarsonlaw.com.
health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
IN THIS SECTION Creating Visuals Instantly for Unpredictable Activities..........33 Human Trafficking.............................................................................. 36
Creating Visuals Instantly for Unpredictable Activities By Judy Endow, MSW, LCSW As an adult with autism, knowing what will happen during each day is important to me. For children, who have much less life experience, it is often a deal breaker in terms of them being able to participate in life around them. Using visual schedules supports this need both at school and on ordinary days at home, but what about those times when life gets hectic or when spontaneity is in order? Why Visuals Work Having an autism neurology means that neither internal regulation (physical, sensory, emotions) nor external regulation (making sense of the world around us) just happens! We must bring deliberate and ongoing attention to these areas. Using a visual schedule and other visual supports are powerful in establishing a working external organization (Endow, 2011, pg. 65). Supporting Your Child With Visuals There are many ways you can support your child when you do not have his visual schedule with you or when you do not have the right picture to use on the visual schedule. Remember, it is not about the visual – it is about supporting your child. When one of those needs is to have the world organized visually, this can be accomplished in a variety of ways. Creating Visuals Instantly Here are some ideas: 1. Sticky Note Schedules: It is easy to have a pad of sticky notes in various places (purse, pocket, car, your child’s backpack, beach bag, etc.). Use sticky notes when you are not sure yourself just what will happen until it happens. For example, you are taking your kids to the beach. You do not know exactly what will happen in which order because it depends on the circumstances you will encounter. Using sticky notes, you can print “driving to the beach” (or draw a car) on one note and “beach entrance” (or draw the entrance sign) on another sticky note. You have just created a First/Then schedule (Endow, 2011, pg. 71). Once you know what will happen next, you can make the next sticky note piece of your schedule. Perhaps it will be “put the blanket down,” or if you do not need to be that detailed to support your child, “play in the water.” 2. Sticky Note Choices: It is also easy to use your sticky notes to give visual choices. If your child cannot figure out what to do once you have the blanket down, you might use
sticky notes to give the choice of swimming (draw waves) or playing in the sand (draw sand pail). 3. Check Off Task List: Sometimes you will have several things that need to be accomplished and you either don’t know the order you will do the tasks or if you will get them all done. You can make a list using paper and pencil or the “Notes” feature on your child’s iPad (or similar device) or even a small dry erase board. A check off or cross off schedule works great for outings where you know the components, but not the order (Endow, 2011, pg. 72). For example, at his brother’s baseball game, your son will do several things before it is time to go home such as:
Watch the game. Play on the swing Purchase a treat from the concession stand. Sit on the lawn chair. Lay on the blanket. Use the backpack toys. Play iPad games. Drink from the water bottle.
A cross off schedule allows your child to see and to check off the accomplished items when he asks, “Is it time to go home yet?” It also gives him a visual idea of what else there is he might do during the ball game. When it is nearing time to leave you can tell your child to choose one more cross off activity and then it will be time to leave. 4. That’s-a-Surprise Cards: One child I worked with, Tamika, became quite dysregulated and prone to meltdowns when too many events hit her as a surprise. Sometimes I could accurately guess a “surprise” registration such as a novel event. Other times I would not guess, such as when a truck passed as we were waiting to cross the street and Tamika was expecting only cars. It isn’t the event that is important; it is the registration of the event as a surprise by the child’s nervous system. I knew that Tamika’s neurology could handle 3-4 of these “surprises,” but beyond that, we were pushing our luck to have her remain calm without giving her nervous system some down time to reorganize. Since Tamika was able to show whenever something hit her as a surprise, I gave her three That’s-a-Surprise cards (recipe cards with an exclamation mark on them). She handed over one card each time she experienced a surprise. Once she Continued on page 35 www.spectrumsmagazine.org
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 physicians, nurses, psychologists, and family resource staff who are knowledgeable about the diagnosis and the latest in treatments and therapies are primary contributors to the blog. Topics range from selecting a summer camp 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 teleconference 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 teleconference. Watch past lectures on our website. 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. For information related to setting up a teleconferencing site for the Autism 101 or 200 series in your community, contact James Mancini at firstname.lastname@example.org or 206-987-3481.
Creating Visuals, Continued from page 33 had given me all three cards, we would take a break from the activity so Tamika could regulate, after which she got the three surprise cards back, and the process started over. 5. When Nothing Else is Available, Use Fingers to Track Process: One time I arrived at a consultation to discover I was to accompany a student to the apple orchard. Jorge had never been to the apple orchard, nobody had prepped him, it wasn’t on his schedule, and the van was leaving shortly! Upon arrival at the apple orchard I asked what the kids do there and then used my fingers as visuals going through the process saying the words to go with each with each finger like this:
º “First (holding pointer finger), we will go for a walk.” (holding middle finger), we will pick our apples, º “Then putting them in the apple bag.” (holding ring finger), we will pay for the apples º “Next in our apple bag.”
º “Then (holding pinky finger), we will carry our apples
I went over my five-finger visual system several times. Each time through Jorge made a verbal approximation of one additional item. Only after he understood all five items did he smile. Off we went! At each juncture, I used my fivefinger visual to highlight for Jorge just where we were in the apple orchard process. Summary If your child needs or benefits from the use of visuals, know you can support him during the unpredictable nature of spontaneity even if you don’t know yourself what will happen ahead of time. While it is great to have computer-made visual schedules such as Boardmaker, know that sticky notes and recipe cards can come in quite handy. And when all else fails, you can fall back on your built-in visual system of five fingers on each hand! Providing the visual support your child needs will go a long way to ensuring both of you have more positive experiences while out and about in your community. Endow, J. (2011). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go! Shawnee Mission, KS: AAPC Publishing.
to the van.”
“At the end of the school day (holding thumb) we will each take our apples home.”
Judy Endow, MSW, LCSW maintains a private practice in Madison, Wis., providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three now grown sons, one of whom is on the autism spectrum. Judy can be reached through her website, www.judyendow.com. This article was originally written for and published by Ollibean on August 11, 2014.
HEALTH + WELLNESS
Human Trafficking Protecting Our Most Vulnerable By Tara O’Gorman Michael is a 15-year old teenager in southwest Washington. He loves reading, anime, and online gaming, typical of many teenagers. Michael also has Asperger’s Syndrome and an anxiety disorder, so his parents were thrilled when he finally showed interest in interacting with friends online. He has always struggled with friendships, so his parents thought this was a great way to begin to interact safely and comfortably for him without the heavy expectation of social interaction that had always been difficult for Michael. He is just happy his parents are finally giving him some space and not always harassing him about going places and meeting new people. His online friends understand what a drag parents can be. One of them, Jason, even offered to let him move in so he could get away from his overbearing mom and dad. It’s totally cool, he said. My parents said you could stay in our extra room. Sarah, from a Portland suburb, met David in a chat room through an app on her phone. She is a 14-year old girl with some developmental disabilities and has always imagined she would grow up to be a princess, swept away by her loving prince. Her parents are very protective and have talked to her about stranger danger and safe touch. But David is not a stranger. He has told her all about himself, and they have been chatting online for almost three months. He is older… 16… but he loves her and wants them to be together. He even asked her to send photos of herself. She was a little uncomfortable with the idea, but no guy has ever even looked at her as a girlfriend before, so she’s sure David is just being romantic. He really is her prince. They are planning to meet in person at the mall this weekend. She knows her parents will not allow her to date, so she is telling them she is going to the mall with her best friend. What Sarah and Michael, and their parents, do not know is neither of these teenagers is interacting with safe friends online. Both have been drawn in by human traffickers and are being groomed for a terrifying, and potentially deadly, venture into a dangerous world they are neither prepared for, nor will they be allowed to leave voluntarily. What is Human Trafficking? According to the National Human Trafficking Hotline, “human trafficking is a crime involving the exploitation of someone for the purposes of compelled labor or a commercial sex act through the use of force, fraud, or coercion [which] affects individuals across the world, including here in the United States… [and] affects every community… across age, gender, ethnicity, and socioeconomic backgrounds.”(2017). The practice has been
called modern-day slavery, and January has now been dubbed Human Trafficking Awareness Month in the United States. There are two primary types of human trafficking. Labor trafficking and sex trafficking. Stop Child Abuse Now (SCAN) of Northern Virginia explains child trafficking as “the enslavement of children by force, fraud, or coercion for the purpose of commercial sexual or labor exploitation. Children are tracked for use in sex industries such as prostitution, pornography, sex tourism and forced marriage. They are also used for domestic work, sweatshop work, migrant farming, begging and armed services.” The National Center for Missing and Exploited Children (NCMEC) receives 10,000 reports of child sex trafficking each year. While many believe the myth that the trafficking of humans only involves citizens of foreign countries, “Portland [Oregon] has earned a reputation for being a hub of human trafficking, in part due to its prime location along I-5. Some have called Portland the largest hub for juvenile trafficking in the country, but a lack of reporting makes it hard to quantify the exact number of victims in Portland and other major trafficking cities across the country.” (SCAN, 2017) Statistics According to the Polaris Project website, there have been nearly 21 million victims of human trafficking, globally, with more than 25% of those victims being children. More than ¾ of those documented child traffic victims are homeless, runaway, or ‘throwaway’ youth, and the average age for initial involvement in trafficking of children is 12-14 years old, and, “in 2016, an estimated 1 out of 6 endangered runaways reported to the National Center for Missing and Exploited Children were likely child sex trafficking victims. Of those, 86% were in the care of social services or foster care when they ran.” Recent statistics show males to be victims of approximately 40% of trafficking situations. At-Risk Groups While men, women, and children of all ages and backgrounds are victims, there are groups considered to be at higher risk for trafficking. Children in the foster care system, runaways, drug abusers, abuse or neglect victims, persons with low self-esteem, and children of addicts are all considered at-risk for trafficking. Continued on next page
Human Trafficking, continued from page 36 Mental and physical disabilities are also considered risk factors for potential trafficking victims. Specifically, risk factors for those with disabilities include vulnerability to authority figures who would take advantage of those with social and communication skill deficits, lack of protective resources, and a diminished capacity for understanding personal safety and the motivations of other people. Traffickers groom potential victims early – gaining trust, making false promises, and otherwise manipulating individuals into believing lies about love, protection, a better life for families, and financial gain. These promises and lies often eventually evolve into isolation, threats, and violence that keep victims from contacting authorities or fleeing trafficking situations if they are physically able.
Warning Signs Parents, educators, and the law enforcement and medical community are often in the best position to recognize the warning signs that a person may be groomed for or already involved in human trafficking. Some warning signs include habitual running away, chronic fear and anxiety, an inability or an unwillingness to explain where the person has been, having older boyfriends or older friends or seeing a drastic change in types of friends. Unexplained money or expensive gifts, keys to unknown locations or hotel rooms, tattoos or brands, STDs or unexplained bruises or broken bones are all warning signs that should be explored by authority figures concerned about a child or vulnerable adult’s well-being.
There is little research on specific trafficking dangers to those with Autism Spectrum Disorders (ASD). The connection is easier to make when sexual abuse statistics are examined. In one Canadian study, 95 adults with ASD were interviewed regarding sexual abuse. An astounding 78% of those interviewed admitted to being involved in sexual scenarios under coercion or pressure. (Medical Daily, 2014) Dr. Gloria ArroyoGrubbs, a Chiropractic Physician in Vancouver, WA, adds, “With over 20 years of healthcare experience, specifically with individuals with special needs, I frequently discuss sex education topics to parents and young adults. In the past four years, I have seen more information on an increase in sexual abuse towards children with special needs, specifically due to parents not teaching the difference between appropriate or inappropriate touching, appropriate relationships, and sex education. This is not parents being naive but thinking that the children and teens would understand the information they receive from school, TV and peers, as most do, thus leaving them more vulnerable for sexual victimization. As a physician that works closely with children and adults on the spectrum, it is often a topic that I discuss with parents on a weekly basis.” Persons with developmental or intellectual disabilities may have extra protection because they depend on others for their needs, but that same reliance leaves them vulnerable to caregivers who are abusive or who force them into harmful situations such as trafficking. They may not recognize abuse or coercion or know where to go for help if they are being hurt or mistreated.
Ways to Protect and Discuss Danger In Ben Wolford’s article, Sex Abuse Risk Higher for People with Autism, Prompting Calls for Better Sex Education, Dr. Shana Nichols shares, “Explicit instruction on appropriate sexual behavior is more crucial for people with autism ‘due to difficulties recognizing red flags and interpreting thoughts, feelings and behaviors of others’.” (Medical Daily, 2014) Sarah Attwood, in her book Making Sense of Sex: A Forthright Guide to Puberty, Sex, and Relationships for People with Asperger’s Syndrome, (2008) mentions “studies carried out in different countries have shown time and time again that it is most often those young people who have scant information who become involved in early sexual experiences, often making mistakes they later regret. Those who are well-informed tend to delay their first sexual encounters, and when they do become sexually active, they have the confidence to negotiate effectively with a partner, and use protection. To put it simply, whatever the age of our children, sexual ignorance is not bliss.” It is important to teach children about healthy relationships and boundaries. Good touch vs. bad touch conversations can be uncomfortable but necessary. Children and adults with ASD are often very trusting of ‘friendly’ people and cannot always sense danger or motivations. Talk to them about human trafficking, what it means, and who to trust if they feel pressured or threatened in any way. Protecting children from trafficking means protecting them from predators who attempt to lure victims through online Continued on page 39 www.spectrumsmagazine.org
HEALTH + WELLNESS
CREATIVE ARTS DAY CAMP $170 per week Aug. 7 - 10 Aug. 14 - 17
(Aug. 18 - celebration for all campers)
The Creative Arts Day Camp for children with and without special needs is a one-week, half-day program where children are immersed in creative arts in a therapeutic setting.
Learn more: events.marylhurst.edu/daycamp Marylhurst Universityâ€™s campus is located just 10 miles south of Portland INSPIRE between Lake Oswego and West Linn.
Human Trafficking, continued from page 37 access, chat rooms, and social media. Know which social media accounts your child is using, insist on access to accounts and passwords for safety reasons, be ‘friends’ with your child on social media in order to understand what they may be seeing and doing online, set up guidelines for online access and safety, and use internet filters to prevent access to pornographic or other harmful websites. Brenda Huffstutler, LMSW, a Crime Victim Advocate and Mental Health Clinician with Lutheran Community Services in Vancouver, WA, suggests, “As parents, the best way we can prevent victimization is to talk to our kids. Know where they are going, find out who their friends are, and check up on them. If they aren’t comfortable talking to you, have another adult/mentor available for them to connect with.” “It is also crucial to know what your child is doing on the Internet at all ages and to limit this accessibility. There are so many apps, ways to hide history, create dummy accounts, and have access at all hours. If the Internet settings are confusing to you, take them to an electronic/phone store and have them assist you in setting parameters you are comfortable with.” If a child has been a victim, parents should be sure police, prosecutors, attorneys, doctors, and therapists are aware of and trained to understand the specific needs of disabled/special-needs persons. There are specific trafficking organizations in most areas that can guide families to resources. Points to Consider Observers often ask: why not just leave? Fears of “being hurt or killed or family being hurt or killed, shame, guilt, fear of exposure, extortion through photos, nowhere else to go, isolation, and Stockholm Syndrome (identifying with captors/pimps and having conflicting feelings for them)” often keep victims in trafficking situations that may seem like a choice to some. Victims may be financially dependent on traffickers or simply have nowhere else to go. (Human Trafficking Fact Sheet, n.d.)
police, shelters, and developmental disability agencies are also excellent resources for advice on how to escape human trafficking and how to seek justice for victims. Additional Resources: An extended version of this article and additional resources are available online at: www.autismempowerment.org/human-trafficking CITATIONS: A Parent’s Guide to Human Trafficking (2013). SCAN. Retrieved from https://www.scanva.org/wp-content/uploads/2013/06/ HumanTrafficking_English.pdf Attwood, S. (2008). Making sense of sex: a forthright guide to puberty, sex and relationships for people with Aspergers syndrome. London: Jessica Kingsley. Domestic Minor Sex Trafficking (n.d.). Retrieved from https://www.clark.wa.gov/sites/default/files/ CommercialSexualExploitationofChildren.pdf Human Trafficking Hotline (2017). Retrieved from https:// humantraffickinghotline.org/type-trafficking/human-trafficking Human Trafficking of Individuals with Disabilities Fact Sheet (2014). Retrieved from http://dodd.ohio.gov/HealthandSafety/ Documents/Human%20Trafficking%20Fact%20Sheet%2010%20 17%2014.pdf I Am Jane Doe (2017). Retrieved from http://www.iamjanedoefilm.com/ Polaris – The Facts (n.d.). Retrieved from https://polarisproject.org/facts Wells, D. (2017). On the Track: Sexual Exploitation along the I-5 Corridor. The Gate. Retrieved from http://uchicagogate.com/2017/01/09/on-the-track-sexualexploitation-along-the-i-5-corridor/ Wolford, B. (2014). Why People With Autism Are At Higher Risk For Sexual Abuse. Medical Daily. Retrieved from http://www.medicaldaily.com/sex-abuserisk-higher-people-autism-prompting-calls-better-sexeducation-298430
For parents of children with ASD or other disabilities, hypervigilance is a part of our life. We constantly worry about our children’s day-to-day interactions, their emotional stability, and their future. We are self-described ‘helicopter parents’ and are always looking to protect our vulnerable children from bullies, inadequate access to the education system, and a world that is not always designed for their special needs. Human trafficking is a very real danger for our children, whether they are minors or legal adults, and we must face the danger as we have any other obstacle in their paths. Education and vigilance are already on our side. Some of the simple, yet powerful, steps discussed above could literally save the lives of our most vulnerable. If you have been a victim of trafficking or suspect that someone you know is in danger or needs help, contact the National Human Trafficking Resource Center at 1-888-373-7888 or Text INFO or HELP to BeFree (233733) for advice and access to resources in your area. Local
Tara O’Gorman, MSW, joined Autism Empowerment’s Board of Directors in October 2016. She is an independent consultant and advocate with SpectrAbilities, dedicated to working with individuals and families living with Autism Spectrum Disorders (ASD) and consulting for organizations within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is the proud mom of two sons, including an Asperger’s teenager. www.spectrumsmagazine.org
therapy THERAPEUTIC OPTIONS AND RESOURCES
IN THIS SECTION Realities of Being an Autistic Therapist............................................. 41 Partner Provider Directory.......................................................................44 Upcoming Autism Empowerment Events........................................46
Realities of Being an Autistic Therapist Don’t let misconceptions fool you By Judy Endow, MSW, LCSW In my work as a clinician licensed in my state to provide mental health therapy, many parents of children diagnosed with autism tell me how much they appreciate the fact that I am not only a therapist, but also am autistic. They feel they have a hybrid of sorts; I am a clinician, an autistic and have parented both children with and without autism. In addition, I have been an autism consultant for several school districts over the years so also can appreciate the educational side of things when it comes to their children with autism they are bringing to see me in the therapy setting. But, it isn’t always like this. There are also the times where parents do not particularly appreciate the fact of my autism. For many, their children’s new diagnosis of autism means that they are just beginning their journey of learning about autism. Most people these days learn new things by employing Google or Siri – it is where we start our journey to find out about those things we do not yet know. And thus it is that new learners are thrust into the good, the bad and the ugly about autism. Unfortunately, when it comes to autism, Google and Siri will lead people to places that may not be the most helpful. Society’s view of autism is far behind what we currently actually know about autism. There are some particular facets of society’s perception of autism that new parents find on Internet searches that erroneously get taken as facts. I would like to address three misperceptions often presented as facts about adults with autism that can negatively affect parents when finding out their child’s new therapist happens to be autistic.
Three Misconceptions Often Construed as “Facts” 1. Parents of children with autism are the experts when it comes to autism. While it is true that parents of autistic children are the experts on their own children and tend to really know lots about autism, particularly how autism affects their own child, autistic people are actually the real experts on themselves – on their autistic selves and how it is to be autistic in this world. I am in both camps – autistic and parent of autistic. There is a distinct difference.
2. If autistic adults are able to tell about their autistic experience, they are not autistic enough to really know about autism. This is just outright false, yet many parents of autistic children not only believe this but also act as if it is a fact, thus drawing in newbie parents to unwittingly assume it is so. In reality, it doesn’t even make sense. Getting an autism diagnosis means that the clinician giving the diagnosis determined the individual met all clinical criteria to receive that diagnosis. Thus, if an individual has been diagnosed with autism that individual is autistic. There isn’t any such thing as being not autistic enough. It is like being pregnant – you are or you aren’t – you can’t be in the state of not being pregnant enough. 3. You will never find an autistic adult who is like your child. Therefore, autistic adults cannot speak to autism in your child. This one is a mixed bag. It is true that you will never find an autistic adult who is exactly like your child. I do a fair amount of public speaking on autism topics. Parents will come up to me afterward and tell me that I am nothing like their 2-year-old, their 6-year-old, their 13-year-old, etc. The fact is that today I am not anything like I was when I was 2 or 6 or 13-years-old either! We all grow and change over time whether we are autistic or not. Autistic adults have had a lifetime to learn how to live more comfortably in the world. They should look different from your child. Even your child will look different in the future than he looks today. Because an autistic adult does not look anything like a 2 or 6 or 13-year-old child does not mean that adult cannot speak to the shared experience of autism. An autistic adult, even if their expression of autism is vastly different from that of your child, shares more neurological similarities than non-autistic people share with your child. An autistic adult often understands many things autistic children are affected by and react to due to their shared neurology. This list could go on and on, but these three misconceptions about autistic adults that can be readily found during Internet searches sometimes directly affect me as a mental health practitioner. Newbie parents of autistic children who have searched and read up online sometimes think these “facts” apply to me because I am autistic. They then extrapolate that because I am autistic, I cannot be a good therapist for their child. The reasoning goes something like this: Because you can talk about autism you are not really Continued on page 43 www.spectrumsmagazine.org
By Judy Endow, MSW, LCSW In my work as a clinician licensed in my state to provide mental health therapy, many parents of children diagnosed with autism tell me how much they appreciate the fact that I am not only a therapist, but also am autistic. They feel they have a hybrid of sorts; I am a clinician, an autistic and have parented both children with and without autism. In addition, I have been an autism consultant for several school districts over the years so also can appreciate the educational side of things when it comes to their children with autism they are bringing to see me in the therapy setting. But, it isn’t always like this. There are also the times where parents do not particularly appreciate the fact of my autism. For many, their children’s new diagnosis of autism means that they are just beginning their journey of learning about autism. Most people these days learn new things by employing Google or Siri – it is where we start our journey to find out about those things we do not yet know. And thus it is that new learners are thrust into the good, the bad and the ugly about autism. Unfortunately, when it comes to autism, Google and Siri will lead people to places that may not be the most helpful. Society’s view of autism is far behind what we currently actually know about autism. There are some particular facets of society’s perception of autism that new parents find on Internet searches that erroneously get taken as facts. I would like to address three misperceptions often presented as facts about adults with autism that can negatively affect parents when finding out their child’s new therapist happens to be autistic.
Three Misconceptions Often Construed as “Facts” 1. Parents of children with autism are the experts when it comes to autism. While it is true that parents of autistic children are the experts on their own children and tend to really know lots about autism, particularly how autism affects their own child, autistic people are actually the real experts on themselves – on their autistic selves and how it is to be autistic in this world. I am in both camps – autistic and parent of autistic. There is a distinct difference.
2. If autistic adults are able to tell about their autistic experience, they are not autistic enough to really know about autism. This is just outright false, yet many parents of autistic children not only believe this but also act as if it is a fact, thus drawing in newbie parents to unwittingly assume it is so. In reality, it doesn’t even make sense. Getting an autism diagnosis means that the clinician giving the diagnosis determined the individual met all clinical criteria to receive that diagnosis. Thus, if an individual has been diagnosed with autism that individual is autistic. There isn’t any such thing as being not autistic enough. It is like being pregnant – you are or you aren’t – you can’t be in the state of not being pregnant enough. 3. You will never find an autistic adult who is like your child. Therefore, autistic adults cannot speak to autism in your child. This one is a mixed bag. It is true that you will never find an autistic adult who is exactly like your child. I do a fair amount of public speaking on autism topics. Parents will come up to me afterward and tell me that I am nothing like their 2-year-old, their 6-year-old, their 13-year-old, etc. The fact is that today I am not anything like I was when I was 2 or 6 or 13-years-old either! We all grow and change over time whether we are autistic or not. Autistic adults have had a lifetime to learn how to live more comfortably in the world. They should look different from your child. Even your child will look different in the future than he looks today. Because an autistic adult does not look anything like a 2 or 6 or 13-year-old child does not mean that adult cannot speak to the shared experience of autism. An autistic adult, even if their expression of autism is vastly different from that of your child, shares more neurological similarities than non-autistic people share with your child. An autistic adult often understands many things autistic children are affected by and react to due to their shared neurology. This list could go on and on, but these three misconceptions about autistic adults that can be readily found during Internet searches sometimes directly affect me as a mental health practitioner. Newbie parents of autistic children who have searched and read up online sometimes think these “facts” apply to me because I am autistic. They then extrapolate that because I am autistic, I cannot be a good therapist for their child. The reasoning goes something like this: Because you can talk about autism you are not really
Realities, continued from page 41 autistic enough to understand my child. In fact, you are nothing like my child. And if you really are autistic, how can you even be a therapist?
difference in roles of self-advocate and therapist. It can be emotionally difficult when parents of new clients think less of me because I am autistic. For me, this is compounded because I work with autistic clients and their families. Thankfully, this rarely happens, but when it does, it is hard. Even so, and even though I know it is about them and their journey and not about me personally, it is still hard. So, for autistic therapists out there – solidarity and yes, we can serve our clients well while remaining true to ourselves. As we don our therapist hat, we choose to make the session serve the needs of our client. Sometimes this means our self-advocacy hat needs to be worn in our heart instead of on our head for others to see. It is hard to believe, but sometimes self-advocacy isn’t the most important thing at the moment. This article was originally published at www.judyendow.com, Aspects of Autism Translated
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 now grown sons, one of whom is on the autism spectrum. Judy can be reached through www.judyendow.com.
It would be easy for me to react personally to this sort of reasoning, but in a therapy setting where I am the therapist, I react in a different way than I would if I were in a social setting where I would react in line with autistic self-advocacy. As a therapist, it is not about me, but about my client, or in my case, about the parents of a potential client. If a child’s parents are not in a place where they are able to believe in their heart that an autistic therapist can be just as capable of meeting their child’s needs as a nonautistic therapist that is about them and their journey. It is not about me. They get to be who they are in the moment, and when they are in my therapy room, I will respect and support their journey. I will offer them choices and suggest they interview one or two more therapists before deciding which therapist will be the best match for them and their child right now. I leave the door open letting them know that sometimes a therapist they think is not a good match just now for their child might be a good match in the future. Whether or not I see them in the near or distant future, I wish them well in their journey. Personally, I hope and expect to see a few of these families in the future because I know as they learn more they will grow and change over time. The erroneous “beliefs” gleaned today from the Internet will change for some as they go forward and continue their journey. And indeed, it has already happened for a few families. I am sharing this from my own life for several reasons. One reason is that it took me time to learn the www.spectrumsmagazine.org
Spectrums Magazine works to bridge the various communities serving those with autism to create a hub of information and resources—all in one place. Our print directory offers a categorized listing of provider partners that value access to information and help create a robust autism community. Want to sponsor our directory or have your business listed? Contact us to learn more: email@example.com. Spectrums Magazine doesn’t endorse, promote or guarantee the services or outcome of any one provider or type of therapy.
ADVOCACY + SUPPORT Autism Empowerment P.O. Box 871676 Vancouver, WA 98687 (360) 852-8369 firstname.lastname@example.org www.AutismEmpowerment.org AE promotes a culture of acceptance and empowerment for youth, adults and families within the Autism and Asperger community. We offer education, resources and support services for all ages and abilities. Autism Society of Oregon 5100 SW Macadam Ave. #400 Portland, OR 97239 (888) 288-4761 info@AutismSocietyOregon.org www.AutismSocietyOregon.org ASO provides resources, education, services and supports to everyone impacted by autism. There is no fee for our services. Family Focused Intervention Services 2856 26th Ave. Forest Grove, OR (also serves WA) email@example.com www.familyfocusedintervention.org School/state advocacy and home-based interventions specializing in the areas of AAC, Academics, Social Skills, Emotional Regulation, and Behavior.
Incight 111 SW Columbia Street, Suite 1170 Portland, OR 97201 (971) 244-0305 www.incight.org Supports and empowers key life aspects of education, employment, and independence for people with disabilities in Oregon and SW WA Multnomah County Intellectual and Developmental Disabilities Services Division 421 SW Oak Street, Suite 610 Portland, OR 97204 (503) 988-6258 https://multco.us/dd We increase an individual’s quality of life by helping to access their community through coordinated case management. We provide eligibility, case management, supports and protective services at no cost. Parent to Parent of Klickitat County Donna Tiffan, Coordinator (971) 236-8791 firstname.lastname@example.org Program offering emotional support and information about disabilities and community resources to parents and caregivers. SpectrAbilities Tara O’Gorman, MSW (941) 322-4229 email@example.com http://spectrabilities.com Consulting, Support and Advocacy for organizations, and for families and individuals living with Autism Spectrum Disorders. Wright Behavior: Consulting and Advocacy LLC (503) 887-6965 firstname.lastname@example.org www.wrightbehavior.com Building bridges and empowering families!
APPLIED BEHAVIOR ANALYSIS (ABA) Play Connections Autism Services LLC 1800 NW 169th Place, Suite B100 Beaverton, OR 97006 (503) 737-4693 email@example.com www.playconnections.com Our Early Learners receive individualized, comprehensive and effective treatment programs to build a solid foundation for lifelong learning. The Shape of Behavior 7 SE 30th Avenue Portland, OR 97214 2nd Location at: 350 B Avenue Lake Oswego, Oregon 97035 (866) 437-2165 www.shapeofbehavior.com Our individualized therapy focuses on the relationship between child and environment so that positive changes endure. Western Psychological & Counseling Services Various Locations in the Portland/ Vancouver Metro Area Referral Coordinator: (503) 858-0183 www.westernpsych.com Services include diagnostic testing, individualized ABA programs including a unit for aggressive/self-injurious behaviors, social skills groups, parenting support, and individual/family mental health treatment.
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SPECIAL EDUCATION LAW
Creative Arts Day Camp Marylhurst University 17600 Pacific Highway (Hwy 43) Marylhurst, OR 97036 (503) 636-8141 events.marylhurst.edu/summer-camps
Portland Music Therapy LLC Angie Kopshy, MM, MT-BC Kate Harris, MT-BC 9517 SW Barbur Blvd. Portland, OR 97219 971-221-7144 firstname.lastname@example.org www.portlandmusictherapy.com
Services include diagnostic testing, individualized ABA programs including a unit for aggressive/self-injurious behaviors, social skills groups, parenting support, and individual/family mental health treatment. CHIROPRACTIC Dr. Gloria A. Grubbs, DC, BA, BS TriStar Family Chiropractic, 8221 NE Hazel Dell Avenue, Suite #104 Vancouver, WA 98665 (360) 258-1506 email@example.com www.tristarfamilychiropractic.com Specialized care and wellness for children and adults with Developmental Disabilities, ADD/ ADHD, Mental Health/Addictions, Autism and Asperger Syndrome. Se habla EspaĂąol. HOUSING Stephenâ€™s Place 501 SE Ellsworth Rd Vancouver, WA 98664 (360) 984-3600 firstname.lastname@example.org www.stephensplace.org We are a supportive independent apartment community designed for adults within the I/DD community. We provide relationship-based care so each person may live a fulfilled life with meaning and dignity.
We use neurologic music therapy techniques to achieve non-musical goals related to speech, cognition, motor-movement, anxiety reduction and community. NATUROPATHIC MEDICINE Natural Choices Health Clinic Mary Frazel N.D. 3007 SE Belmont Street Portland, OR 97214 (503) 445-7115 email@example.com naturalchoicesclinic.com Providing family naturopathic medical care for over 20 years. Areas of expertise: autism, ADHD, learning/behavior/ sensory challenges. Neurofeedback Rose City Therapeutics 8050 SW Warm Springs St, Ste 130 Tualatin, OR 97062 (971) 224-4089 firstname.lastname@example.org www.rosecitytherapeutics.com In our clinic, we use EEG neurofeedback, a method that optimizes brain selfregulation, to improve symptoms associated with autism and other brain-related challenges.
Wiscarson Law Diane Wiscarson, Attorney at Law 3330 NW Yeon Avenue, Suite 240 Portland, OR 97210 (503) 727-0202 email@example.com www.wiscarsonlaw.com We empower families via a sensitive approach to special education law through personal experience, attentive staff and an efficient model. SPORTS + FITNESS Miracle League of Vancouver P.O. Box 872563 Vancouver, WA 98687 (360) 524-5423 firstname.lastname@example.org www.miracleleagueofvancouverwa.org Adaptive baseball program for kids and adults with any disability. No age limits. Positive buddy program. Everyone plays-bats-wins! Specialty Athletic Training Portland, OR & Vancouver, WA (503) 863-0512 www.SpecialtyAthleticTraining.com Professional personal training specializing in fitness programs exclusively for children and adults with special needs. TRAVEL Trips, Inc P.O. Box 10885 Eugene, OR 97440 (541) 686-1013 Trips@tripsinc.com www.tripsinc.com We provide all-inclusive vacation packages for travelers ages 18 and older with developmental and intellectual disabilities. Travel the world with us! www.spectrumsmagazine.org
Upcoming Events • www.AutismEmpowerment.org For a full listing of upcoming events and meetings, visit www.AutismEmpowerment.org
August Saturday, August 5th Regal My Way Matinee Sensory Movie 10:30 am showtime 7800 NE Fourth Plain Blvd. Vancouver, WA 98662 Call 844-462-7342 ext 433 in advance for movie that will be showing. Sunday, August 6th 3rd Annual Potluck Picnic and Autism Serves Kids Care Club Food Drive 11 am - 3pm Salmon Creek Park/Klineline Pond 1112 NE 117th St. Vancouver, WA 98685 Come out to Salmon Creek Park and bring a potluck dish to share. Food, Games and Fun! Friday, August 25th - Sunday, August 27th US Autism & Asperger World Conference Sheraton Portland Airport Hotel, Portland, OR www.usautism.org
September Saturday, September 2nd My Way Matinee Sensory Movie 10:30 am showtime 7800 NE Fourth Plain Blvd. Vancouver, WA 98662 Call 844-462-7342 ext 433 in advance for movie that will be showing. Thursday, September 7th AE/G6 Airpark Free Sensory Jump Night 6:30 - 8:30 pm G6 Airpark Vancouver 2200 NE Andresen Rd, Vancouver, WA 98661 RSVP is required at info@AutismEmpowerment.org
Saturday, September 16th Public Safety Day 12 - 4 pm 505 NW 179th St. Ridgefield, WA 98642 Thursday, September 21st AE Give More 24! Open House Celebration Sci-Fi, Fantasy and Superheroes Party 4 - 8 pm 101 E. 6th St., Vancouver, WA 98660 Celebrate SW WA’s Annual Day of Giving with our Open House Sci-Fi/Fantasy/Superheroes party. Giving stations open! Fraley Photography will be doing photo shoots. Dress as your favorite character! Autism Empowerment offers Support Groups, Social Clubs, Game Nights and Volunteer Service opportunities. Please see our website for dates/times and Facebook group page links.
Ongoing Support Groups: • • • •
Adults on the Autism Spectrum (peer-led) AWEtism We Embrace (Neurodiverse & NT) Dads’ Autism Support Group Parents of Tweens/Teens Support Group
Ongoing Social Groups: • Friday Family Game Night (school-age) • SW WA Tween and Teen Social Club (11 - 19) • Tween and Teen Book Club (11 - 19)
Ongoing Service & Volunteerism: • Autism “Rocks” - Rock painting, hiding and collecting (All ages) • Autism Serves Kids Care Club (8 - 18) • Autism Serves - Volunteerism for all ages
Support Autism Empowerment & Spectrums Magazine - http://bit.ly/aedonate
BIG RESULTS Every moment is a teaching moment at Bridges Middle School, an independent nonprofit school in Portland, Oregon, serving fifth through eighth grade students with learning differences.
BridgesMS.org Small Classes, Big Results
Building Confidence We Transform & Competence Lives
Bridges Middle School, formerly Gately Academy, provides a highly creative and focused school setting for students who benefit from small class sizes, strong academics and individualized instruction. Bridges’ students gain the academic, social and self-advocacy skills necessary to succeed in school and at home.
Many of our students have ADHD, ADD, High-Functioning ASD and/or specific learning disabilities that hamper their ability to thrive in more traditional settings. Too often they have been victims of bullying, losing confidence and motivation. The teaching team at Bridges meets each student where he or she is academically and socially.
Applications are accepted throughout the school year. We invite you to contact our office to schedule a student-led tour of our campus and meeting with admissions staff to learn how we can help your student succeed in school—and life.
We offer a variety of social and emotional supports to our students and their families. Bridges’ passionate team of teachers and counselors help students understand the complex nuances of middle school culture, providing responsive support services for challenges that arise within the school community.
Call or email us to schedule your tour today. www.spectrumsmagazine.org
Bridges Middle School | 716 NE Marine Drive | Portland, OR 97211 | 503.688.2922 | info@BridgesMS.org
As an Independent Apartment Community (IAC), Stephenâ€™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.
Call or email us to schedule a tour (360) 984-3600
email@example.com 501 SE Ellsworth Road, Vancouver, WA 98664
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 Stephenâ€™s Place community, but would like to build peer relationships
Learn more about us @ www.stephensplace.org
and participate in activities.
Published on Jun 30, 2017
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