Spectrums Magazine Spring 2017 from Autism Empowerment

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

SPRING 2017

A JOURNEY OF MUSIC & MAGIC The Big Deal about Small Talk Swindells Resource Center Choose Your Battles Understanding Neurodiversity Innovative Autism Research

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SPRING 2017

contents

A JOURNEY OF MUSIC AND MAGIC

FEATURED SECTIONS ADVOCACY

8 10 12

Parents, Precision Medicine, Autism and Genetics What does a parent have to do with precision medicine? Understanding Neurodiversity Encouraging therapists to serve with a strengths-based approach. Autism Does Not Define Me The opportunity to define ourselves.

HEALTH + WELLNESS

31 32 34 36

Choose Your Battles Partnering with your child on the journey together. The BIG Deal About Small Talk Stories from the Spectrum with Judy Endow. Swindells Family Resource Center A treasure chest of cross-disability support. Family Navigators Family-centered support after the diagnosis.

LIFESPAN

16 18

Autistic Burnout and Aging Does burnout impact the aging process? A Spectrum of Support Help in finding the right support group.

Recreation

A Journey of Music and Magic The Joel Suzuki Series and the Wavemaker Order.

therapy

40 44 46

Consumer Advocacy in Autism Research Local autistic advocate participates in Scientific Peer Review for new autism therapies. Provider Partner Directory Categorized listing of local providers. Upcoming Autism Empowerment Events Ongoing and monthly events.

EDUCATION

26 28

Autism Service Animals: Required in the IEP? What does the law say? A Parent/Teacherâ&#x20AC;&#x2122;s Guide to an IEP Meeting Local teacher provides multifaceted perspective. www.spectrumsmagazine.org

FROM THE PUBLISHER

SPRING 2017 | VOLUME 5, ISSUE 1 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 spectrums@autismempowerment.org

It was April 22nd, 2016 when I officially signed the paperwork for Autism Empowerment to acquire Spectrums Magazine. What a year it is has been! Today, Spectrums is a nonprofit program of Autism Empowerment. The issue you have in hand is expected to reach over 25,000 readers in Washington and Oregon. Our online version will reach thousands more worldwide.

Connect with us online!

For those of us like myself who are autistic and an autism parent, April brings great anxiety and heightened emotion as we brace ourselves to hear what kind of messages about autism and Asperger’s will be shared by other autism organizations, support groups, families, and advocates.

/SpectrumsMagazine /AutismEmpowerment

At Autism Empowerment and Spectrums, we promote Autism Acceptance as well as Acceptance for All Abilities. We promote it every single day of the year.

SpectrumsMag

@SpectrumsMag @AutismEmpowermt

Autism Empowerment collaborates with a lot of positive groups and hopes that people will financially and emotionally support organizations that support Autism Acceptance, advocacy, meaningful and accessible supports and positive systemic change.

Check out the diverse range of articles in this issue and let us know how we’re doing. With your support, we grow stronger. Whether you’re a parent new to diagnosis (or trying to choose your battles), a teen looking for a fun book series, interested in advocacy and autism research, experiencing burnout or seeking a strengths-based approach to therapy, these articles (and more) are in our Spring 2017 issue. If you appreciate what you read and learn something new, we appreciate you supporting our nonprofit publication. We can’t do it without the support of people like you. Enjoy!

Autism Empowerment

ON OUR COVER

Photo by John Krejcha

www.spectrumsmagazine.org

Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumsMagazine.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2017 All rights reserved.

We are listening, we are reading, we are watching... and we are internalizing.

Autism Empowerment

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

We encourage you to critically think and ask yourself what kind of message you want youth and adults who identify as Autistic, Aspie or on the autism spectrum to see and hear?

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

Join local sci-fi fantasy author, Brian Tashima and his children, Torin and Melody for a journey of music and magic in our cover story on page 22.

the

A grassroots community magazine, Spectrums is a program of Autism Empowerment. With a mission of promoting a culture of acceptance, enrichment, inspiration and empowerment, these area professionals 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

IN THIS SECTION Parents, Precision Medicine, Autism and Genetics..........................8 Understanding Neurodiversity................................................................ 10 Autism Does Not Define Me....................................................................... 13

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Photo courtesy of Sermone Family

EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY

WORLD CONFERENCE & EXPO AUGUST 25-27, 2017

Sheraton Portland Airport Hotel

Join in-depth conversations with the experts in the world of autism. OVER 30 of the world’s most respected researchers, practitioners, and education specialists in the Autism and Asperger community come to Portland to share valuable resources for your child, family member, patient, friend, student, or yourself. Keynote Speaker

Temple Grandin, PhD, is one of the most accomplished and well-known adults with autism in the world. In February of 2017, Dr. Grandin was named to the National Women’s Hall of Fame. She was selected by Time magazine as one of the "100 Most Influential People in the World” (2010). Dr. Grandin’s fascinating life was brought to the screen in 2010 in the HBO production full-length film, "Temple Grandin", which claimed seven Emmy Awards, including outstanding made for TV movie.

PHILLIP C. DEMIO, MD

Internationally recognized expert physician

RAUN K. KAUFMAN

WILLIAM SHAW, PhD

Subject of an award-winning NBC television movie

Researcher of the biochemical basis of autism

ALIX GENEROUS

International public speaker, published scientist

STEPHEN SHORE, EdD MARLO THURMAN, PhD

World renowned professor of special education

Professor of Special Education and author

GIL TIPPY, PsyD

Clinical Director and creator of academic programs

Early Bird Packages start at $115 for a 3 DAY CONFERENCE PASS PLUS, WITH 2 OR MORE PEOPLE REGISTERING AT THE SAME TIME, THERE IS AN ADDITIONAL 10% DISCOUNT. EARLY BIRD REGISTRATION ends May 29th.

US Autism & Asperger Association 12th Annual World Conference and Expo

The Conference is for Parents, Families, Caregivers, Adults with ASD, Employers, Educators, Professionals, Agencies, Self-Advocates, and anyone who wants to learn more about Autism, Asperger Syndrome, and related disorders.

www.spectrumsmagazine.org Continuing education is offered throughout the entire conference for Schools, AOTA, APA, ASHA, NASW.

ADVOCACY

Parents, Precision Medicine, Autism and Genetics:

The perfect recipe for an amazing diagnostic biomarker! By Sandra Bedrosian-Sermone What does a parent have to do with precision medicine? What does autism have to do with genetics? What’s the big deal about a diagnostic biomarker? If you would have asked me these questions three years ago, I would have said absolutely nothing! But today, I will tell you, the answer is ABSOLUTELY EVERYTHING! And if you are reading this, chances are that you might be a parent just like me, and maybe you might start looking deeper into your child’s condition and see something that could change the history of science for many children affected by autism. You can do it and you can make a big difference! Research has suggested that as much as half of all autism cases are caused by rare gene mutations. Autism research projects such as SPARK for Autism and MSSNG, which collaborate with hundreds of institutions worldwide, are currently going on to understand the genetic influence of autism. These are huge studies, focusing on hundreds of known linked genes. This has become so important and relevant, that many top genetic laboratories, like GeneDx based out of Maryland, have recently begun creating individual molecular genetic testing panels for specific known variants linked to Autism, including the mutated gene that my son was diagnosed with in 2014. When Tony was six years old, using Whole Exome Sequencing (WES) at Duke University, he was diagnosed with a de-novo (non-hereditary) gene mutation on one of these highly linked autism genes, called the ADNP (Activity-Dependent Neuroprotective Protein) gene. But Tony doesn’t just have autism. Like many children on the spectrum, he is also non-verbal, has severe intellectual delays, developmental delays, sensory processing issues, G/I issues, sleep issues, endocrinology and vision issues as well as many other complex medical conditions.

to have that child evaluated for autism. For us, our son Tony, who is now nine years old, displayed many autistic traits at a very early age. But because he had a happy disposition as a baby and young toddler, Tony was not diagnosed with autism until he was six years old, following the discovery that he had a gene mutation that causes one of the top de-novo autism-linked genetic syndromes in the world called ADNP Syndrome. Had we known about this syndrome when he was a younger child, he would have been able to start intervention and therapy sooner! He lost those valuable years when his brain had greater plasticity that could have resulted in a much better outcome for him. The specialized therapy he received after his autism diagnosis and genetic diagnosis has been life changing, so this has been a very hard pill to swallow as a parent, knowing he could have started sooner had he only been diagnosed. Why didn’t Tony get a diagnosis sooner? Why did it take six years to finally pinpoint a genetic mutation? Part of this reason, and one of the hottest topics in “Precision Medicine” these days is the lack of good “diagnostic biomarkers.” A diagnostic biomarker, in my non-scientific terms, is something that can be seen on a child/person that can direct a doctor to a specific condition, in this case, a gene mutation. For autism, there seem to be no easily identifiable biomarkers that can direct a clinician to any form of autism, including genetically caused cases. In recent studies, MRI’s have proven to be one of the new research tools to look at brain imaging for diagnostic biomarkers showing connections to autism, but these can be very invasive, very expensive and certainly not easily seen. Sadly, at the time that Tony was diagnosed, no known biomarker existed that could have directed his team of doctors to look at the ADNP gene.

Sound familiar, then listen up! If your child has additional conditions like these, even just a handful of them, you might want to think long and hard about getting them into genetics and tested. Science is changing quickly, so what was unknown yesterday, is now known today, and a lot of questions are being answered with DNA! This genetic discovery changed my child’s life!

Tony was the first child in the world diagnosed with an ADNP mutation following the discovery of the ADNP autism-related syndrome. At that time, the team at Duke University knew very little about the ADNP gene, and they had never seen anyone with this condition. The syndrome had NO name; there was NO place to find support, NO place to connect with other families, NO medical protocol, NO treatments, NO cure and NO information for us to understand what this diagnosis meant for our son and his future.

It is a well-known fact that a major flaw in autism management is late diagnosis. As many families know, having a medically complex and developmentally delayed child becomes a huge road block when trying

Enter “Parent-Powered Precision Medicine Researchers” to the story. Sounds funny, but that is exactly what myself and many other families of children with an unknown rare disease get themselves into! Parents, just Continued on next page

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like me, and just like you, are now becoming the driving force in medical discovery. We are connecting the dots and fueling research advancement that would normally take 5-10 years in a traditional research lab. We are helping to advance science because we are highly motivated to help our children and we know our children better than any physician ever could. This is parent driven research! So I became, what I call, a crazy obsessed, highly caffeinated, middle of the night, internet stalking, genetic researching, ADNP detective. I started reading every medical publication, manuscript, journal and study linked to the ADNP gene and other known genetic caused autism-related syndromes. I started contacting clinicians from around the world and began searching for other families. I created a Facebook parent support page and an ADNP informational website. As our ADNP community grew, and my knowledge of the syndrome, I started to identify that our children shared much more medically complex conditions than currently known. I began to collaborate with medical researchers and started a parent/patient generated database. I built my own registry/ study in the hopes that I could find something that could help children get diagnosed at a younger age. And guess what? Thanks to the internet, other amazing ADNP parents, open minded clinicians and researchers who saw the value of parent involvement in research, and an endless supply of Stumptown coffee, I discovered something! I identified a new innovative and important biomarker. One that is extremely easy to see, can be identified at an extraordinarily young age, (on average between 11-12 months old), one that requires no invasive testing, no complex or expensive scans, and believe it or not, IT IS FREE! (Yes, a medical discovery that is free, shocking isn’t it!) It is simply, and most surprisingly, BABY TEETH! I discovered that a large percentage of children with ADNP Syndrome had “early tooth eruption.” Not just crowning teeth, I am talking about a mouth full of teeth, including molars, completely erupted. My son at 12 months had 16 teeth and probably could chew a steak, yet the irony was, that he had a feeding tube because he could not chew or swallow property to eat. After a lot of pushing, I presented this to an international team of ADNP researchers, led by Professor Illana Gozes at Tel Aviv University in Israel and convinced them to do further scientific investigation. Together with an ERA-NET NEURON grant, the team discovered premature tooth eruption as a probable early diagnostic biomarker for the ADNP related autism disorder.

Also looking at the genes that are expressed in human ADNPmutated immortalized white blood cells (lymphoblastoids), whole mouse embryos and mouse brains identified dysregulation of bone/nervous system-controlling genes resulting from ADNP mutation/deficiency. The gene A-kinase anchor protein 6 (AKAP6), discovered here as a major gene regulated by ADNP, also links cognition and bone maintenance. This is the first time that early primary teething is associated with the ADNP related autistic disorder. Early tooth eruption is not seen in any other known genetic syndrome, which makes available an early/simple diagnosis and paves the path to early intervention and specialized treatment plans. Parents, precision medicine, autism, and genetics. If you have a complex child, don’t stop looking for answers, you never know what you might discover and who you might help! For additional information about ADNP Syndrome, please visit www.ADNPkids.com or www.ADNPkids-ResearchFoundation.org or email ADNPkids@gmail.com. Other resource references from this article: Autism Speaks Gene Study: – http://bit.ly/ASsciencenews Gene Dx – www.genedx.com Iliana Gozes, Tel Aviv University – http://english.tau.ac.il/profile/igozes

MSSNG – www.mss.ng Nature.com Translational Psychiatry Journal – http://bit.ly/sermone SPARK for Autism – www.sparkforautism.org

Sandra Sermone is a stay-at-home mother of three children, one of which has a rare genetic condition called ADNP Syndrome (aka Helsmoortel-VanDerAa Syndrome) which is a severe neuro-developmental genetic disease highly linked to autism. Her son Tony (aka-Superman) was the first child diagnosed in the US after the syndrome discovery. Sandra founded ADNPkids.com and the ADNP Kids Research Foundation and acts as the President and Executive Director of the globally recognized 501c3 accredited non-profit organization which focuses on awareness, treatment, support and education. Sandra sits on an international consortium for ADNP research and is an author and legislative advocate for rare disease. She is a huge proponent for obtaining WES testing for all rare undiagnosed genetic syndromes in children and pushes to advocate for better medical protocol and care, education and research for her child’s rare disease.

Our manuscript was published in Nature.com’s Translational Psychiatry journal on February 21st, 2017. In this study, children with ADNP Syndrome were reported to have an almost full erupted dentition by one year of age, including molars, in an astounding 81% of the patients. It’s the first of its kind linked to an extremely rare neurological disorder caused by a mutation to the ADNP which is highly linked to autism. The team investigated by looking at ADNP-deficient mice (a model developed by the Gozes laboratory), by computed tomography (CT). This showed significantly smaller dental sacs and tooth buds at five days of age in the deficient mice compared to littermate controls. There was only trending at two-days, implicating age-dependent dysregulation of teething in ADNP-deficient mice. Photo by Brenna King

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ADVOCACY

Why is it Important for Therapists to Understand Neurodiversity? Serving with a Strengths-Based Approach By Emily Torman and Chris Drakos, with Amy Donaldson, Portland State University Recently, an area speech-language pathologist (SLP) and her colleagues were invited to write an article for Perspectives, an autism-specific edition of a publication from the American Speech-Language-Hearing Association (ASHA) for speech-language pathologists and researchers in the field. The authors, Amy Donaldson, Karen Krejcha, and Andy McMillin, wrote on the topics of neurodiversity and a strengths-based approach to serving the autism community in an attempt to increase awareness of these topics amongst this group of professionals. We wanted to better understand the rationale for the article and how it was developed. Reported here is the result of our Question and Answer session with Amy Donaldson. Q: What was the focus of the article and why did you all feel it was important to write this for an audience of SLPs? The article focused on the beliefs, values, and experiences within the autism community as they relate to speech and language service provision, and urged SLPs and other professionals to focus on the strengths of autistic individuals when partnering with families. As 90 percent of SLPs in schools work with children on the spectrum, they are rapidly becoming a major influence in how schools approach the education of autistic students. As such, promotion of a strengths-based perspective among SLPs throughout the country is a priority, as well as education around a social model of disability. Q: Can you tell us more about a social model of disability and why it is important for professionals to understand? While a medical model of disability views autism from a deficit-based perspective, emphasizing cause and a potential “cure,” the social model of disability focuses on supports for people on the autism spectrum, as well as the removal of barriers preventing those with autism from participating in society. Neurodiversity is the idea that neurological conditions, such as autism spectrum disorder and ADHD, are natural variants of human neurology that require acceptance and accommodation rather than a cure. Thus, neurodiversity fits within the social model of disability.

It is helpful for professionals, such as SLPs to understand the idea of autism being central to one’s identity. It is common for many people who provide services to families experiencing autism (such as SLPs, OTs, and educators) to use what is referred to as “person-first language” – referring to a “person with autism”. Training in one’s field often requires this with the notion that use of such language separates an individual from their disability; that the individual is not “defined” by their disability. However, this perspective does not account for the individual’s identity that some in the autism community have chosen. Q: Yes, many professionals use “person-first language.” What is another viewpoint? Many people identifying on the autism spectrum have expressed the desire for “identity-first language” – referring to themselves as “autistic” or an “autistic individual” or “Aspie”. This identity-first language has been described as a desire to not separate oneself from one’s autism, but rather to claim it and to demonstrate the value and worth of such an identity. Thus, it is critical for SLPs and other professionals to acknowledge this perspective when partnering with autistic individuals in speech and language services. Of interest to many professionals might be a survey completed by Kenny and colleagues in 2016. When asked their preference, autistic individuals and their parents more often preferred to use the identity-first language of “autistic” or “autistic person,” whereas person-first language (“person with autism”) was more popular among professionals who work with the community. While the study depicts a trend towards identity-first language, this may not be the case for every individual on the autism spectrum. Therefore, it is important for SLPs and other professionals to defer to the individual and their family when considering identity and autism. For more information about identify-first language, see: http:// autisticadvocacy.org/home/about-asan/identity-first-language/ Q: What other advice did you offer SLPs related to working with families with children with ASD? Continued on next page

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Neurodiversity, continued from page 10 Q: Would a strengths-based approach be applicable only to therapists and clinicians or might others use such an approach in their work, as well?

One important point for professionals to remember when partnering with the autism community is to seek out the experiences of individuals with autism whenever possible. Many SLPs only experience may be interacting with parents of children with ASD, which is very valuable; however, they can also greatly benefit from seeking out experiences from autistic individuals. They may do so in a variety of ways - books, community activism, and autism self-advocacy are ways in which autistic people have made their voices heard in the autism community. Perhaps one of the most easily accessible sources of insight into autism for many professionals includes online blogs. In their article for Perspectives, the authors highlighted the importance of SLPs and other professionals diving into these resources to develop their understanding of autism and neurodiversity.

Of particular interest to research-oriented professionals in the autism community is the notion of community-based participatory research. Essentially, this style of research partners with members of the autism community at all stages of research from idea development to sharing research results. Considering that neurotypical researchers have carried out the vast majority of research related to autism, there is a tremendous need to reorient the field towards participatory designed studies. This is encapsulated in a phrase that has become synonymous with disability rights activism: “Nothing about us without us.”

Q: When using the medical model, therapy might focus solely on improving deficits. How does a social model of disability shift the focus for professionals who work with autistic individuals?

Q: And, finally, this social model of disability approach seems familiar. Have SLPs encountered this view in their work previously?

Research into the central ideas of neurodiversity has shown that professionals who take a strengths-based perspective (from a social model of disability) promote strong learning outcomes in their autistic students. For instance, individuals who are nonverbal or have very limited verbal communication have made academic progress when professionals assume understanding and adjusted language only when difficulties become apparent. In addition, professionals can presume the competence of autistic individuals by using age-appropriate language when speaking with them and including them in all conversations, and assuming that every child will benefit from taking part in the same curriculum as their neurotypical peers.

An increasing number of professionals are already using a strengths-based approach when working with the Stuttering and Deaf communities. Both of these populations have a rich history of cultural values and beliefs, and focusing on empowerment, rather than impairment, is central to the current best practice when working with these clients. It is possible that future collaboration between these communities could lead to a paradigm shift in the way society views neurological differences.

Another important assumption in a strengths-based perspective is that everyone has the innate human right of agency in their own life. When children are given choices and some degree of control during intervention, they have shown increased motivation. Previous research has shown that a child’s motivation is pivotal to their quality of learning, so by allowing them this self-determination, they have more investment in their own education. By involving a child in the learning process and giving them space to make their own decisions, professionals can empower people while partnering with them.

Overall, one might view the recent article in the SLP publication as the start of a shift in professional perspectives, as well as a call to action. Professionals must recognize the broad spectrum that is the autism community and the multiple viewpoints represented therein. Professionals can partner with the autism community by embracing a strengths-based approach to service provision and increasing understanding of neurodiversity. By partnering with the individuals they serve, professionals can maximize therapeutic outcomes and quality of life of autistic individuals, while ensuring that every client is granted the agency and respect they deserve.

Q: From a strengths-based perspective, how might an SLP or other professional approach what might traditionally be thought of as a “deficit” or restriction? A strengths-based perspective re-frames the medical model’s “restricted” interests as “focused and passionate” interests. Given the freedom to explore their intense interests at home or in the classroom, children on the spectrum may have more opportunity for social interaction while sharing their passions with others. Increased social interaction and involvement is especially important, as it has been shown to increase skills such as language, social interaction, and play, as well as the quality of life of people on the spectrum. By maximizing opportunities to learn within motivating contexts, engage with peers, and focus on strengths, professionals have the opportunity to support children and adults on the spectrum in a manner that builds self-efficacy and relationships.

Chris Drakos and Emily Torman are graduate students in Speech-Language Pathology at Portland State University. They are also members of Amy Donaldson’s Autism and Social Communication Lab. Amy Donaldson is an Associate Professor in the Department of Speech & Hearing Sciences at Portland State University (PSU). Her research focuses on social communication and social competence, as well as the influence of context on performance, for children with autism spectrum disorders (ASD) and their neurotypical siblings. She is also Director of the Autism and Social Communication Lab. www.spectrumsmagazine.org

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By Karen Krejcha Accept me for who I am, Understand that I may not always get what you're saying. Trust that God has me here for a reason; I am an amazing human being. Socially, I might not fit in with society’s expectations. Mentoring can help me along the way. Don’t forget that I have feelings even if I don’t express them. Opportunities for my happiness are indeed possible. Educate and encourage me without prejudice. Show patience and kindness along the way. Never give up trying to “get” me. Ostracizing me will just shut me down. Take time to try and come into my world. Defining me as my diagnosis ignores my essence and best qualities. Emerging talents may arise when you least expect them. Friendship and honesty is valued to me more than you can imagine. I am in need of love and tenderness too. Never let me give up, especially when you see my mood shift. Expect the unexpected and watch me enrich your life.

Autism Does Not Define Me

Many people will read this and I pray millions will act. Embrace and empower someone with Autism today. Autism Does Not Define Me I originally wrote and published this poem on my personal blog, Aspierations - Come As You Are, Let Your Light Shine on April 8th, 2010. At the time, I was relatively new to my family’s autism journey as well as my own diagnosis. To help me make better sense of what I was experiencing and to be able to share that with others who might be going through a similar life journey, I made a commitment to blog every day in April during Autism Acceptance month. On this particular day, I just felt like doing something different. As I wrote the poem, I was reflecting upon my own life on the spectrum as well as the lives of my two sons, Ryan and Justin, who were 3-years-old and 10-years-old at the time. If people were meeting us for the first time, what would we want them to know? It would be a little over a year later when my husband, John Krejcha and I would co-found Autism Empowerment in 2011. We have learned so much from the Autistic, Asperger and autism community in that time. We always have more to learn. I used to receive quite a few emails asking about the poem, especially after it was later re-published in 2013 in an anthology for Chicken Soup for the Soul: Raising Kids on the Autism Spectrum. Admittedly, my views in a number of areas have evolved over time, particularly after becoming more engaged with advocacy and the Autistic and autism community at large. As Executive Director of Autism Empowerment, Editor of Spectrums Magazine, a parent of two sons on the autism spectrum and an autistic woman, I have the opportunity more than most to engage in discussion and exchange among a wide cross-section of the autism community, including autism parents, autistic youth and adults, educators, scientific researchers, nonprofit professionals and allistic advocates. Recently I was asked if I still believe in 2017 what I penned in 2010. Yes I do. The poem was originally intended to reflect what I might have shared with my parents had I been diagnosed as a child. It was also intended to reflect what my sons or others on the autism spectrum might want friends, family or teachers to know. Although nowadays, I do consider being autistic as part of my identity and prefer identity-first language, I still believe the poem is meaningful today. We all should have the opportunity to define ourselves. www.spectrumsmagazine.org

lifespan ALL AGES AND ABILITIES

IN THIS SECTION Autistic Burnout and Aging....................................................................... 16 A Spectrum of Support.................................................................................. 18

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LIFESPAN

Autistic Burnout and Aging Does burnout impact the aging process?

By Judy Endow, MSW, LCSW Last September I returned from a vacation that I had been dreaming of taking for several years. I had booked my vacation quite a long time ago. After booking it, my personal resources declined. Many autistics know this phenomenon as autistic burnout. I am beginning to understand that there is likely some interplay between autistic burnout and the aging process. In autistic burnout, we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me, these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment. Twice during my adult life I had to severely limit my gainful employment because the burnout was too great to enable me to continue. I always have been good at planning and saving so each of these times I had a saving account to draw from for several months. Finally, I had accumulated enough savings to feel confident to book one of my dream vacation! For many years I have found good deals on Alaskan cruises to see Glacier Bay and at long last I felt in a place to be able to actually book the cruise. I have a particular love of water in natural settings. It was very exciting to plan and dream of this upcoming vacation. Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.

I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously. Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past, all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated. Then, my vacation time arrived and regulated or not it was time! And, I was excited – very excited. So, off I went – first to San Francisco for some days and then on the cruise. I was by myself most of the days in San Francisco. I did some sightseeing, but all in a way that worked well for me. I was not rushed and did not have anyone else with me. Most of my friends could not understand why I was looking forward to being completely alone on vacation in San Francisco, but it worked very well for me. I could come and go as I was able and stop whenever I felt the need. I did have friends who met up to have a day in San Francisco before boarding the cruise. While on the cruise we went our separate ways during the day, sharing a dinner table for our evening meal. It was fun to compare notes on who did what during the day and it was just enough social demands for me to enjoy the company, but not be overwhelmed. I could go the entire day without speaking to anyone and walk around the deck viewing the waterways or watching different activities on the cruise ship.

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Autistic Burnout and Aging, continued from page 16 Now that I am back home I have realized that this burnout is different. Even after a lovely undemanding time away, my body regulation has pretty much stayed the same – it has not improved as I had anticipated. Now I am thinking this present autistic burnout is combined with effects of getting older. It is like my body has hit a new normal of sorts, meaning that it has slowed down. It seems that no matter how much sensory regulation I do in a day that my body will never get back to what I consider ground zero. Perhaps this part is some of the aging of my body – it just doesn’t spring back to where I can be all chipper and ready to roll full steam ahead. While at sea I thought a lot about this. In fact, I left my ideas and expectations of my younger self somewhere between Juneau and Skagway. By the time I arrived in Victoria, I was trying on my newly found freedom of being okay with the slowed down self of me. The walking tour along the seaside was going too fast for me to be able to take the photos I wished to take. When the tour veered away from the seaside trail, I excused myself so that I could be alone. I took my jolly good time walking back to the ship and taking over 300 photos during a leisurely stroll; I enjoyed it immensely! Now that I am home I am continuing to practice being kind to myself by adjusting my own expectations of how much I do in one day. As an autistic I have for several years been doing the same quantity of employment, housework, art production, regulation, reading, writing, etc. both daily and weekly. Following a schedule is important to me as is getting things accomplished. I didn’t realize my selfimposed expectations needed to be adjusted.

Spending ten days on a ship surrounded by natural waterways helped me to understand that autistic burnout may be impacted by the natural aging process, meaning that I will not come out of an episode of burnout at my younger starting point. Because so little is known about autistic people and aging, those of us who are getting older can at least start a discussion about it. I personally am wondering just now if the years of acting – passing as a neuro-majority person – impacts the natural aging process. Do autistics age faster because so much personal physical resources are impinged upon in order to year after year appear to be as typical as possible so that we might fit in enough to pass as somewhat human to the rest of society? And if so, is this a fair price to pay? And fair for whom? 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 does workshops and presentations on a variety of autism-related issues, is part of the Wisconsin Department of Public Instruction Statewide Autism Training Team and has been a board member of both the Autism Society of America, Wisconsin Chapter and the Autism National Committee.

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LIFESPAN

A Spectrum of Support 9 Points to Ponder in the Journey for Connection

By Karen Krejcha One of the most common challenges for youth and adults in the autism community is the feeling of isolation. This is true of those identifying on the autism spectrum as well as parents and family members. The good news is that when people meaningfully connect with someone else who “gets it,” who has traveled a similar path or shares a similar neurology or demographic makeup, that feeling of being alone in the world lessens. But how do you find your tribe? The autism spectrum is not one-size-fits-all. Neither are the makeup of support groups. A peer-led group might be ideal for some, whereas a professionally-led group works for others. Online groups are convenient for asking quick questions, sharing successes, challenges and cat photos, however some people prefer face-to-face connection. Whether you’re looking to connect with people new to diagnosis or who have been around the block, many in the autism community are eager to help. If you’re looking to explore neurodiversity, find a faith-based gathering or score some social connections, there are a wide range of autismrelated support groups within the Portland and Southwest Washington metro area. You might even consider starting your own! Finding the right group fit for you or your family members can often take time, so here are some points to ponder in your journey. Affiliation - Are you looking for a support group affiliated with an autism nonprofit, place of faith or health care provider? Often affiliated groups can provide an additional educational component or connect you with other programs and services. Perhaps you prefer a more casual parent gathering? Many parent-led groups will meet at homes, restaurants or out in the community.

Audience - Are you looking to meet parents of teens and tweens? Want support for the siblings? Curious about connecting with other adults on the spectrum? Interested in a Moms’ or Dads’ night out? Prefer your meeting in Español? Groups like this exist in our region and online.

Location - Where is the meeting located? In an office building or someone’s home? What part of the city? Are there accommodations? Is it sensory-friendly? Is there parking or access to public transportation? Driving 30 miles might not seem like a lot when you meaningfully connect with other people, however most of us are grateful to find a group convenient to work or

home. Those in outlying areas often prefer supplementing online. Some groups have both in-person and online options to keep members connected. Time & Day - Some groups meet in the evenings to accommodate working parents, while others meet during the weekday. Some meet monthly while others gather more frequently. Some offer supplemental social get-togethers, while others are for a set period of time. What are your needs?

Demographics - Are attendees single or married? Working or stay-at-home? Millennials, Generation X or Baby Boomers? In Portland or Vancouver? Some groups tend to naturally attract similar demographics while others are incredibly diverse. Personalities and social styles also come into play. This impacts conversation topics. Do you have a preference?

Attitudes & Beliefs - Tying in with demographics, do group leaders and members impart a helpful and positive attitude? Are they likely to comfort? If you need to cry or vent, do you feel you’re in a safe space among peers or is it toxic? Do members believe in Autism Acceptance? Do they welcome hearing input from autistic adults? Are they resourceful rather than judgmental? This is a very tricky thing to gauge, particularly when attending in-person groups as dynamics change depending on the participants, particularly in larger gatherings. With online groups, you have the luxury of lurking, reading past posts and getting a feel for personalities. You can engage when you’re ready. While there can be a huge benefit to learning from and engaging with others who think and act differently, some people prefer specificity (e.g. redheaded parents in their 30s who like alternative rock, Minecraft, Criminal Minds and the Elizabethan era).

Expectations and Rules - When you are looking for a group to feel safe in, try to learn in advance what the expectations and rules are. Can you bring along children? Is it fragrance-free? Before you go to the group, look for contact information and reach out to the group leader to ask about expectations and what happens in a typical gathering. Is there a confidentiality or privacy statement at the beginning of each meeting? If not, be careful what you are willing to share as there is no expectation of privacy.

Guest Speakers - Some groups bring in guest speakers for pre-planned topics and allow you to attend even if you’re not a regular member. This can be a positive way to learn about a topic and have the opportunity to connect with others with similar interests or concerns.

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A Spectrum of Support, continued from page 18 Cost - Is the group free or is there a cost to attend? Do you need to bring a snack? Is there a membership fee and if so, what do you receive? If there is a cost, is the group nonprofit, for-profit or casually structured? Professionally-led groups or gatherings with guest speakers often have a fee attached. Sometimes this can be waived or paid for if you are receiving disability benefits.

There are many benefits in finding a support group that meets your needs, but one of the biggest advantages is in realizing you are not alone in your journey. Take time to research the many different options there are within our community and make sure to try a group out more than once before you decide if it’s right for you. Ideal groups will promote a feeling of acceptance and empowerment and the opportunity for lifelong friendships. The right group will help you feel safe, supported, understood and empowered in your journey, whether you are on the autism spectrum, a parent, a sibling, a caregiver, a spouse, an ally or a family friend.

For extensive in-person and online support group listings, please check out: Autism Empowerment Resource Guide & Support Center (OR/WA) - http://bit.ly/aelocal Autism Society of Oregon Support Groups by Region (OR/ WA) - http://autismsocietyoregon.org/support/supportgroups-region/ Other Online - Local: AE Adult Autism Support Group - www.facebook.com/ groups/adultautismsupportgroup/ AWEtism We Embrace (Neurotypical & Neurodiverse) https://www.facebook.com/groups/awetismweembrace Portland Autism Moms (PAM) - www.facebook.com/ groups/WAMmoms/ Special Celebrations - Support, Resources & Events https://www.facebook.com/groups/specialcelebrations/ Vancouver Autism Moms - www.facebook.com/groups/ VanAutismMoms/ Dads’ Autism Support Group - https://www.facebook. com/groups/aedadssupport/ Online National: Autism Women’s Network: - https://www.facebook.com/ AutismWomensNetwork/ Wrong Planet - www.wrongplanet.net www.spectrumsmagazine.org

recreation INCLUSIVE WAYS TO HAVE FUN

IN THIS SECTION A Journey of Music and Magic..................................................... 22

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RECREATION

A JOURNEY of MUSIC and MAGIC And a launch of the Wavemaker Order

By Karen Krejcha

Since the time we last interviewed Brian Tashima in our Winter 2016 issue, a lot has been going on for the Vancouver, WA-based author and musician. Not only has he done his usual rounds of school visits and trade shows, he’s also managed to prepare an extensive launch campaign for Legend of the Loudstone, the brand-new third volume of his Joel Suzuki series (formerly known as the Spectraland Saga). Fortunately, Spectrums was able to convince him to sit down for a few minutes to talk about that campaign, which includes a special initiative to help the autism and disability communities. Okay, first of all – why the name change? Didn’t you like “The Spectraland Saga”? I did, but as I was working on Legend of the Loudstone, my editor pointed out that this series is, at its core, really all about Joel Suzuki, the protagonist. It’s his journey that forms the backbone of the whole story. So when you couple that with the fact that most of Loudstone takes place in a setting other than Spectraland, it just sort of made sense. I suppose “The Joel Suzuki Series” is also easier to remember than “The Spectraland Saga.” I would agree. Last time we talked, I remember saying that I wanted this series to become a movie franchise. Afterward, I thought, “You know, I can just imagine what’s going to happen: a family will go up to the box office. The dad will say, “Can we get two adults and two children for Specter… uh, I mean, Septra, um, I mean…forget it, kids. Let’s just watch “Cars 5” at 7:30, okay?” “Four tickets for Joel Suzuki” does sound a lot simpler. Exactly. Since we’re on the subject of big plans, why don’t you tell us about what else you have going on? Well, to help celebrate the launch of Legend of the Loudstone, my son Torin and I are starting up something called the Wavemaker Order, which is named after the group of music-magicians in the Joel Suzuki series. Basically, the Wavemaker Order is the official fan club for the books. It’s free to join, and you get access to the Wavemaker Archives, a members-only page on the Continued on next page

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Wavebow graphic courtesy of Roslyn McFarland

Music and Magic, continued from page 22 Joel Suzuki website that contains all kinds of cool exclusive content, like deleted scenes, custom artwork, and more. It also provides an opportunity for fans of the books to bond over a common interest. Beyond that, though, our goal is to turn this group into a force for positive cultural change on a global scale. You see, for every Joel Suzuki book that is sold, one dollar is donated to Autism Empowerment, a nonprofit organization dedicated to improving the quality of life for people and families in the autism community. Thus, the efforts of Joel’s fans to spread the word about the series – through writing reviews, recommending the books to friends, and encouraging them to join the Wavemaker Order – will translate directly into support for all of Autism Empowerment’s various programs, services, and activities. Also, the more Joel’s name gets out there, the more it will help improve the image and representation of people with disabilities in the mainstream media.

Photo courtesy of John Krejcha

Basically, we want the Wavemaker Order to be like a street team, except that it would be about more than just promoting a product, it would be about striving to make the world a better place for people of all abilities. A real-life hero’s journey, if you will, for everyone involved. That sounds very cool. And quite ambitious, as well. Oh, believe me, I’m full of big plans. Not only do I want to fully fund all of Autism Empowerment’s activities – and build them a campus along the way – I also want to create a separate charitable foundation that supports other worthy causes as well, especially those with an emphasis on diversity, disability, and the arts. To be clear: I’m not saying “buy these books so I can do all this cool stuff.” I’m saying that if enough people enjoy the Joel Suzuki series and find it worthy of their time and money as a source of entertainment, I’ll make sure I give back to the communities that supported it on a commensurate scale. In other words, I’ll do what I’m already doing, just more of it. I won’t blow it all on new guitars (laughs). Maybe just a little of it. Right. Let’s talk a bit more about Legend of the Loudstone. You mentioned that it takes place somewhere other than Spectraland, which was the primary setting of the first two books? Mostly, yeah. In this story, Joel, his co-star Felicity, and their Wavemaker friends from Spectraland have to travel to a faraway place called the Mono Realm to track down some escaped fugitives. The Mono Realm used to be six separate states with individual leaders, but then one of the leaders decided to conquer all the other states and turn them into a single unified country. This leader then forces everyone to conform to one particular standard of appearance, which of course makes things a little tricky for Joel and company when they get there. There’s also a brewing rebellion, some complications involving the fugitives, and a sort-of double

love triangle involving Joel, Felicity, and two of the other Wavemakers. Basically, everything you need for a fun little adventure. For those who haven’t already gotten their hands on a copy, where can they go to buy one? They can go to my website at www.joelsuzuki.com, which contains links to my Amazon pages as well as sample chapters. My website is also the place to sign up for the Wavemaker Order – just go to www.joelsuzuki.com/join. If you want to pick up the books locally, they’re available at Kazoodles toy store in Vancouver and Another Read Through bookstore in Portland. Is there anything else you’d like to share with Spectrums readers? The most gratifying part of this whole journey has been hearing from kids who say that this series has changed their lives in a good way, whether it’s by encouraging them to read or by helping to improve their self-esteem. I’m really happy that what started out as a simple request from my son to write him a book has turned into something that has had such a positive effect on others. So to everyone who has supported Joel and company over the past few years, I just want to say: mahalo (Hawaiian for “thank you”). www.spectrumsmagazine.org

education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION Autism Service Animals, Required in the IEP?................... 26 A Parent/Teacherâ&#x20AC;&#x2122;s Guide to an IEP Meeting....................... 28

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EDUCATION

Autism Service Animals: Required in the IEP? NOT! Which law applies? ADA or IDEA?

By Diane Wiscarson, Esq. Service animals, usually dogs, can provide excellent support for people with Autism Spectrum Disorder and/ or other disabilities. Service animals are individually and specifically trained to perform tasks that help a person manage and navigate their environments. These tasks can include anticipating seizures, signaling selfstimulation behaviors, alerting to important/alarming sounds, providing deep pressure sensory input, interrupting self-harming behaviors, and preventing elopement, among others.

Solution? A recent United States Supreme Court case cleared up the confusion between the two laws and, in the case of service animals, which law applies. In Fry v. Napoleon Community School District, issued in February 2017, the United States Supreme Court agreed that service animals are an ADA issue, rather than an IDEA/special education issue. You can read the entire case and the United States Supreme Court’s opinion and look at other documents that were part of the case at http://www.scotusblog.com/case-files/cases/fry-vnapoleon-community-schools/. Americans with Disabilities Act: The ADA protects those with a disability from being discriminated against on the basis of that disability. Known as an “access” law, the ADA guarantees, among other things, access to education for students with disabilities. This generally means that accommodations are provided to a student, which allows access to education. A simple example is a wheelchair ramp for a wheelchair user. A reasonable accommodation might also be a nut-free lunch table for a student with tree-nut allergies. School districts that have applied the ADA to service animal requests have allowed service animals, almost without exception. There may have to be discussion regarding who provides the “handler” for the service animal, but that is a separate issue.

Divide Among School Districts: In recent years, there has been disagreement among school districts regarding service animals accompanying students to school. While some districts have welcomed service animals at school with open arms, reasonableness and training, others have simply refused to follow the law and allow service animals to attend school with their persons. What is the difference between the schools that allow service animals and those that do not? The surprising answer seems to be which law is applied by the school district – the Americans with Disabilities Act (ADA) or the Individuals with Disabilities Education Act (IDEA).

Individuals with Disabilities Education Act: The IDEA requires school districts to write an Individualized Education Program (IEP) for every student identified with a disability, when that disability impacts the student’s education, and the student is in need of specially designed instruction. The IEP must be individually written to address that particular child’s educational needs, and must be reasonably calculated to enable a child to make progress appropriate in light of the student’s particular circumstances. The most prevalent argument for keeping service animals out of school is that “It is not on a student’s Individualized Education Program” (IEP) and therefore not required for a student to receive a “free appropriate public education” (FAPE). The individually written IEP must contain all of the services and supports a student requires to receive a FAPE. The school district logic is, if the student does not need a Continued on next page

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Autism Service Animals, continued from page 26 service animal to receive a FAPE, then the school does not have to let the service animal through its doors. There are many documented instances when a parent has advocated for a student to have an Autism Service Dog at school, only to be informed by the rest of the IEP team that the service animal is not necessary at school. Therefore, since the service animal is not “necessary,” the service animal is banned from the school. Who Gets It Right? As the United States Supreme Court ruled, Districts following the ADA are complying with the law. Under the ADA, school districts that allow service animals to attend school with their student correctly understand that IEPs, FAPEs, and other special education considerations miss the mark when talking about service animals. Service animals are allowed to attend school with their person without regard to any special education laws, via the ADA. The ADA requires schools to allow children’s service animals to accompany them to school, and the IDEA is not discussed in this context.

can be lengthy, expensive, and complex. And, judges were seemingly uncertain as to which law to apply, and whether the complaint should be resolved in a judicial or administrative proceeding. The law is much clearer, thanks to the Fry family. Service animals accompanying children to school fall under the ADA. There is no need to claim that the student “needs” a service animal, as is required for other accommodations put into place on an IEP for a student. Under the ADA, service animals can attend school with a student as a reasonable accommodation, and no permission or discussion of “need” should be required. If a school district refuses to allow a service animal at school with its student, pursuing a legal remedy will still likely be lengthy and frustrating, but at least the law is now clear about where families need to go to obtain help from the legal system and that the ADA is the correct law to be applied.

Where Are Complaints Filed? Despite confusion as to which law applies to disputes about service animals at schools – the ADA or the IDEA – parents must pick one or the other in order to file a complaint in the right forum. ADA cases are filed in the United Stated District Court (a federal court), in the region where the family lives. Complaints about IDEA violations are filed with the State’s education agency, and result in an administrative hearing. In Oregon, complaints are filed with the Department of Education, and in Washington, the Office of Superintendent of Public Instruction. Even Courts Were Confused: In several instances, children who were not allowed to bring a service animal to school filed lawsuits in federal court claiming a violation of ADA. In other cases, courts have found that service animal issues should be analyzed under the IDEA rather than the ADA, and then dismissed the case from federal court. Other parents have tried to have the service animal put on a student’s IEP as an accommodation. Some school districts have told parents that since the service animal is not “necessary for the student’s education” there is no reason to discuss whether the service dog can attend school with its student. These districts simply refuse to allow the service animal, often without any discussion. Trying to figure out which law applies to service animals and how to educate school districts so that students can have their service animals at school has been very frustrating for families. Where service animals been have excluded from school, some animals have unfortunately lost the bond with their student when the student was forced to attend school without them. Other service dogs sit at home, waiting for their student to return from school, unable to provide services to their person during the school day. How Does This Help Families? Before the Fry case, most parents and education attorneys were hesitant to file cases related to service animals, because they

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.

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EDUCATION

A Parent/Teacher’s Guide to an IEP Meeting Perspective from both sides of the table

By Aaron Blackwelder

As a father of two boys on the Autism Spectrum and a high school teacher, I have the pleasure of sitting on both sides of the table in numerous Individualized Education Program (IEP) meetings. Some have been productive while others were frustrating and unbearable. Despite my perspective of the outcome, it is the child who ultimately gains or loses the most from the meeting. I’m hoping to give some advice to both teachers and parents to help make these annual meetings productive for everyone involved--especially the student. Start with perspective As a teacher, I have experienced meetings that made me feel as if they went well and everyone was on board. I have also sat in meetings feeling like I was dealing with parents who were overly protective of their child--one who is unwilling to allow their child to take responsibility for his/her development. As a parent, I have experienced meetings that made me feel as if they went well and everyone was on board. I have also sat in meetings feeling like I was dealing with a teacher who was difficult and unwilling to accommodate my son. I am sure that I have been viewed as both a caring and supportive teacher as well as the unaccommodating teacher. I am also sure I’ve been viewed as the open and involved parent as well as the overbearing and narrow-minded parent.

Photo courtesy of Eric Jacobson

starting point, it lays a foundation for success. We have to concede everyone’s values may be different. Some parents want more structure for their children while others want more choice or acceptance. Some teachers value routine and responsibility while others emphasize creativity and choice. These are all acceptable models and can act as positive experiences for the student. Allow all parties to have a voice

The truth is, I care deeply about my students’ and my children’s success and want their educational experience to be positive, enriching, and meaningful. I did not become a teacher to make my students’ lives difficult, nor do I walk into my boys’ school looking to tear the teachers apart and make them cringe. In both cases, I am there because I care.

Often, the IEP meeting can seem one-sided. Because these meetings take personal and professional time, there can be an unspoken consensus to get through as quickly as possible. The moderator will often start with the classroom teacher(s) first so they can leave immediately. The teacher(s) will present their narrative of the student’s successes and struggles, will ask if the parent has any questions, and then leave. There is something missing. Often the parent and student’s narrative are left out.

I think the first thing that both parents and teachers need to assume when entering an IEP meeting is that everyone sitting around the table has an interest in doing what’s best for the student. If that can be a

It would be more meaningful and productive if the moderator started by asking the child and parent (depending upon the age and ability of the child) questions such as: Continued on next page

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IEP Meeting, continued from page 28

These questions can better inform teachers about the behaviors of each child and his/her attitude toward school. They also give students and parents a voice that can help make school a more positive experience. And if time is an element, have the parent and student complete a questionnaire prior to the meeting. Remember, if the meeting is about the student, who knows better than the student and the parents? Think outside the box We all have our routines and sometimes they do not match those of others. Allow ourselves to remember it is the child’s education that is the priority. Many of the accommodations written into the IEP seem generic such as: • • • •

More time to complete assignments. Preferential seating. Modify the number of problems to be completed. The ability to test in an alternative setting.

These are good, but they may not address individual needs. We can be more creative when developing meaningful accommodations. I had a conversation with a parent whose autistic son struggled to write. The boy had an essay due in P.E. on the benefits of physical exercise, and the boy was completely disengaged. I suggested she find out the P.E. teacher’s objective. Was it to write effectively? Was it to understand the benefits of exercise? Did these objectives need to be combined? If the objective was to understand the benefits of exercise, could the student make a poster, create a PowerPoint, write a story, put together a brochure, or make a video? Could he tap into personal interests and do research on a video game or develop an idea for a game that promotes physical activity?

If writing is required, could the student write an essay about what he liked about the project or how he could have done it differently? There are so many options the child could pursue to meet the learning objective and accommodate the child. In one of my son’s IEP meetings, the math teacher said she allowed students to use notes on tests. The problem is, my son struggles with processing too much information. To organize himself to read and think about the problems on the test and then to correlate those questions to words scratched on notepaper is too much for him, so he does not use his notes. We came up with a strategy to help him. Prior to the test, the teacher would highlight notes to match the questions to the corresponding notes. Eventually, he will highlight his own notes and then both test and notes. When parties are willing to think outside the box, solutions can be found. Request alternate grade reporting If a child struggles with a specific subject, parents can request an alternative grade reporting system such as a Standards-Based IEP or a Pass/Fail grade. Standards-Based IEPs require students to be assessed only on the standards. This makes it clearer what learning targets are expected. Formative items like homework, classwork, and other compliance pieces are not considered — only summative assessments on the learning objectives. Requesting a Pass/Fail grade allows students to earn credit without it negatively impacting a student’s GPA. A Pass/Fail grade can make it clearer what the student needs to do and the grade is not punitive. Follow up after the meeting Allow all parties the opportunity to settle into the new accommodations. However after a period of time, either the parent or the teacher should follow up to discuss the effectiveness of the IEP. Be willing to share what is working and what is not. Brag about successes but be willing to make adjustments. Teachers, parents, and students working together provide the opportunity for a child’s learning to flourish. Agree that the IEP is about the child and be willing to listen and think creatively. When you do, each child will reap the benefit of a dynamic education that takes their interests and needs into account. Photo courtesyof Bell Studios

• Are there any subjects, units, or projects your child loves? • Are there any that frustrate your child? • What homework assignments have been enriching for the family? • Have there been any that caused stress? • What are things your child likes about school? • Are there things that frustrate? • How do you think we can work better together?

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. mrblackwelder.wordpress.com

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

IN THIS SECTION Choose Your Battles..............................................................................31 The Big Deal About Small Talk.................................................... 32 Swindells Family Resource Center............................................. 34 Family Navigators................................................................................ 36 www.spectrumsmagazine.org

Choose Your

Battles

Partners on the Journey Together by Tara O’Gorman

Parenting is a complex, always-evolving venture, and parenting a child on the spectrum adds a whole new set of challenges when it comes to addressing behavior. The phrase ‘choose your battles’ runs through my head constantly. Deciding what to address vs. what to let go often has me feeling like a detective working a case. Few issues can be fully addressed without first gathering the facts, analyzing the evidence, and coming to a conclusion about how to resolve the problem. This is often much easier said than done.

and the internal feud of the disappearing child and the emerging adult. Puberty is tough enough for any adolescent. Throwing hormone warfare into the mix for a person with an ASD can be even more difficult. Just when they are finally maturing to the point they can often be selfreflective and accountable for their actions and decisionmaking, hormones kick in and add an unreasonable, unforgiving curve in the road. Disagreements over video game or television time, hygiene, and personal safety frequently increase during puberty.

When children are newly diagnosed on the autism spectrum, parents often learn to define the problem first before we can determine how to work out a solution. When it comes to negative behaviors, we need to decide first – is the behavior autism-related? Is it sensory overload? Is it a result of social communication deficits? Does he or she need mom and dad to frame the problem (as we see it) in a way that fits into the child’s own understanding of the world? If none of that criteria seems to be met, is it possible it is just about a kid having a bad day? Or seeking attention? Or having a selfish moment, just as any child or adult is prone to occasionally feel? So much to consider.

So what does ‘choose your battles’ really mean? Battling rigid behaviors with rigid expectations that do not have grounds in mutual understanding is a recipe for disaster. Would it be ideal if our children finished all the food on their plate? Sure. Would it not be wonderful if the endless, tiring daily reminders to put on deodorant and brush teeth ended, and hygiene just become a habitual task that required no discussion? Absolutely. Would it be easiest if the 30-minute per day video game allowance was always respected? Most definitely.

Children with an autism spectrum disorder (ASD), regardless of age, often exhibit behavioral challenges in response to sensory input. Clothing textures, imperfect fit, and feeling too restricted in clothes or shoes leads to morning meltdowns before the child has even left the house. It is a familiar scenario for a majority of families living with ASD. It can also be one of the earliest parenting battles. Toddlers refusing to wear shoes. Fifteen minutes getting the toes of the socks just right. Adamantly demanding to wear shorts in the middle of winter. Many children with ASD exhibit food ‘pickiness’ from an early age, when in fact, there may be food intolerances, texture issues, or feeding problems that require therapeutic intervention. Loud noises, constant commotion, and too much touch lead to behavioral reactions and meltdowns. Without true understanding of what instigates a refusal or reaction, we may assume a child is simply being stubborn or defiant. Once puberty becomes a factor, hormones add new challenges with pre-teen and teen attitude, mood swings,

When trying to determine how, when, or if an undesirable behavior should be addressed, try to consider: • Is there a safety issue that must be addressed? • Is a behavior personally annoying to us but not particularly harmful? • Is it embarrassing to us, or is there a more significant reason the behavior should be addressed? • Is the child modeling behavior he or she sees from siblings, classmates, or parents? • Is there a deeper issue beyond ‘refusal’ or ‘stubbornness’? (hint… the answer to this is probably always YES.) • How can the problem be framed in a way that will be understood by everyone and put forth as a goal to be achieved through collaboration? Not every problem has a solution. And not every solution is ours to find. Sometimes kids need to work out the problem Continued on page 39 www.spectrumsmagazine.org

HEALTH + WELLNESS

The

BIG

STORIES from the SPECTRUM

Deal About Small Talk

Autism from an Autistic perspective

By Judy Endow, MSW, LCSW As an adult with autism, small talk is the most difficult of all communication, and yet it is likely the most important communication skill when it comes to developing real relationships with other human beings. I think of small talk as all the word fluff that people “lacking” autism (love to say it that way!) seem to require. I was reminded again last night when a dear friend popped out to chat online with me. Here is how our conversation started: Susie: hey Judy: what Susie: “what?” geez, was just saying hi Judy: STARTING OVER! Judy: hi back Judy: PS Forgot the fluff. Guess I skipped too much blah blah blah. Forgive me? Susie: LOL no worries Because Susie is a good friend, the conversation moved on. But, consider this – Susie has known me for years. She understands I am not wired to automatically engage in small talk just like I understand Susie is wired to expect small talk to occur. Since there are more Susies than Judys in the world, the onus is on me. If I want real friendships, I need to engage with other people in a way that shows them I value their friendship. This makes small talk a BIG deal! People expect small talk. It is part of that ever illusive hidden curriculum – all information neuro majority people are wired to naturally pick up so never need to be taught. Autistic people, on the other hand, have a neurology that does not permit them to automatically pick up all the hidden curriculum that everyone else knows, but nobody has ever taught – such as small talk (Endow, 2012). And because small talk is expected it is a BIG deal in the social arena when you don’t deliver it!

Small talk is also a BIG deal in when it comes to business relationships. It is difficult for me to understand why, when a boss says “time is money” (meaning that workers should not waste time), he would then EXPECT all workers to engage in a certain amount of small talk with every business transaction. (Myles, Endow & Mayfield, 2013) This just goes to show that small talk is a very BIG deal! Small talk is such a BIG deal that we are even expected to carry on with perfect strangers using small talk! This is particularly befuddling to me, but it is true that the expected polite thing to do is use the fluff words of small talk everywhere you go. Yesterday I did errands and watched for the small talk. It fell out of the mouths of the grocery checker, the postal worker and the bank teller (even though it was the drive-through!) Because small talk is such a BIG deal, I have made it my business to learn about it and become proficient enough to use it so as to fit more comfortably into the world around me, having more positive encounters with strangers and business people along with better relationships with close friends. Here are some things that have helped me: Watch for small talk: For many weeks I intentionally watched for small talk when going on errands, working and spending time with friends. Once I started watching for it, I was able to identify it. This helped me to understand what sorts of things were considered small talk. Find appealing aspects of small talk: For example, even though I find small talk difficult I do very much enjoy the predictable repeating pattern – basically, you can count on small talk to be part of most conversations, so the pattern repeats with each conversation regardless of the conversation partner. Identify the small talk topics: The topics I have identified include the weather, the weekend and compliments. It has been helpful to me to know these topics that usually come at the beginning and sometimes at the end of a conversation are small talk in that I don’t need to pay close attention or remember all the details. This allows me to focus on the more important words that Continued on next page

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The Big Deal, continued from page 32 usually follow the small talk in business transactions (Myles, Endow & Mayfield, 2013).

In conclusion, remember: if you teach communication or social skills to folks on the autism spectrum, please embed the art of small talk along the way. As autistics, our learned communication strategies fall flat without small talk. Many of our learned social skills put us in a position next to other human beings because we have learned their ways and are able to look like them. But if we have not learned the art of small talk, we appear awkward, are easily dismissed and sometimes teased. Once we have learned the art of small talk, we have a choice of when and where we wish to exert the often enormous amount of energy it takes to use it. It has been a huge positive in my life to have this choice. Therefore, I encourage you to please teach us the art of small talk because it is a BIG deal. REFERENCES Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing. Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press. Myles, B. S., Endow, J. & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Writing Scripts Ahead of Time (Endow, 2006, pg. 52): My brain cannot retrieve something it hasn’t stored. Writing scripts ahead of time allows my brain to store the generic small talk fluff words so that I can pull them up and use them without needing to waste the energy it takes to create my portion of each small talk transaction that my brain otherwise reads as novel. I have scripts for the weather with a multiple-choice feature to accommodate current weather events. Here is one small talk weather script I use: “How are you liking this (heat, cold, wind, rain, sunshine?)”

Originally written for and published by Ollibean and Aspects of Autism Translated (2014)

Play acting scripts: It will not work to simply repeat rote small talk scripts. You will come off looking very odd. I have found it helpful to think in terms of play-acting (Endow, 2012). This allows me to match the information of the script to the real life setting. For example, to a friend I might ask, “So, what’s the scoop on your weekend?” With a business acquaintance I might ask, “Did you have a nice weekend?” Build word sandwiches: Whenever I have something important to say I pop up a picture of a sandwich. This shows me that my important words are the filling, but I need to build the sandwich, with the bread being the small talk words. The sandwich pop up reminds me to start and end my important words with small talk. It is amazing how much better people like my ideas when I sandwich the idea in small talk!

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HEALTH + WELLNESS

Swindells Family Resource Center A Treasure Chest of Community Support

By John Krejcha

When parents first receive a diagnosis for their child of autism or another disability, they are often left to wonder, now what? How do we best support our child? There is a tremendous amount of information to process and a wide range of emotions to experience. Where is a good place to start? For families living in the Portland metropolitan area, the Swindells Resource Center of Providence Child Center provides a treasure chest of resources for families navigating the journey into unchartered waters. When Jean Baton Swindells was born in 1957 with Down Syndrome, her parents Ann and Bill Swindells Jr., had few places to turn for information, resources or support. After Jean died at the age of 33, the Swindells family provided the financial support to build the Jean Baton Swindells Resource Center. Established at Providence Child Center in 1994, it gives families the information the Swindells did not have when Jean was growing up. The Swindells Resource Center provides support for parents and caregivers of children who have special health needs, developmental delays or any disability. They serve all of Oregon and southwest Washington. Their main campus is located within the Providence Child Center at the Portland Medical Center and in January 2017, they opened a second resource center in Portland at Providence St. Vincent’s Medical Center. “All youth and families are welcome, no matter who their health care provider is. We want to create a sense of safety and authenticity when a family enters the center,” shares Jody Wright, Executive Director of Swindells. She continues, “It is important for families to know that each staff member at Swindells is either a parent or family member to somebody with a disability.” When families visit Swindells, they receive support from caring and understanding parents who know what it’s like to journey down an unexpected life path. Swindells offer families and caregivers tools and support they need to help children reach their highest potential as they transition through childhood from youth to adulthood. There are a wide range of resources to help families regardless of diagnosis, age,

ability-level, language, health care provider or family income. They do this through a variety of ways: Free Lending Library At the main campus, the Swindells Resource Center has over 6,000 books that can be checked out at no cost to families and the center itself is warm and welcoming. Jody explains how the lending library works. “If a family comes in, they are more than happy to browse and if they find something they would like to borrow, they can leave with that resource with them. If a person can’t make it to the center or are from out of the area, then they can call us and request one of the books in our library. If we have it on the shelf, we will mail it to them and provide them a prepaid self-addressed label for the book’s return. It costs the person nothing to borrow the book. We send books to people from all over Oregon as well as southwest Washington and the Tri-Cities area.” The resource libraries provide information on a wide variety of subjects related to disabilities and special health care needs. Jody explains, “We have books on all kinds of subjects and topics but the majority of the books are in three categories. Books about autism are our largest category followed by behavioral health which includes anxiety, depression, ADHD and bullying. The third largest section is sensory health. We also have many books in Spanish and a selection of books in Chinese.” Jody talks about how the center has flexibility to react to current findings and changes within the autism community. “For example, when the book ‘The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism’ by Naoki Higashida came out in English, we got many requests and were able to quickly get in a number of copies.” Events and Speaker Series Helping to empower parents, family and caregivers through their events and speaker series is an important way the center can bring practical, useful and timely information to families in the region. Continued on next page

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Swindells Family Resource Center, continued from page 34

“We work very closely with community partners to determine the community needs,” says Michelle O’Donnell, Outreach Community Resource Coordinator for Swindells. She continues, “In addition to several large events each year which bring many community partners under the same roof, we host several monthly speaker events that are free or low-cost to the community.” In the past, topics have included Auditory Processing in Teens, Your Child’s Anxiety in the School Setting, Sensory 201, Bullying of Children with Special Health needs and many more. A variety of workshops are also offered in Spanish. There is positive sibling support for brothers and sisters too. As part of their special events and speaker series, Swindells offers monthly SibShops at both their main campus and St. Vincent’s campus. Care Notebooks The Care Notebook is a free organizational tool developed by Swindells that helps families coordinate the complex records of their child’s care, services and providers all in one place. Notebooks are available in English, Spanish and Russian and are a real timesaver for families. From the time of diagnosis, families can be easily overwhelmed by a mountain of information. In addition to reports from a child’s primary care provider, there is often paperwork from occupational therapists, physical therapists, nutritionists, psychologists and other practitioners. In a school setting there are Individualized Education Program (IEP) documents, 504 plans and notes from teachers and specialists. This notebook can assist a family in getting all of their paperwork, appointments and accommodations organized. Swindells staff are also available to help families put their binder together. All you have to do is contact them to make an appointment and they’ll be happy to sit down with you. From time to time they also hold Care Notebook group trainings.

Family Navigators Jody Wright was excited to talk about a new pilot program at Providence Child Center and St. Vincent’s called Family Navigators. “A Family Navigator is a peer-to-peer support person that is integrated into a clinic to support families right after a diagnosis. The Family Navigator is a bridge between a clinic and the family to give emotional support in the beginning stages of their journey. (Spectrums Magazine has reported more in-depth on this new program on page 36 of this issue.) The future looks bright for Swindells as it had one of its largest expansion years in 2016/2017 with the opening of their St. Vincent’s location. They are also starting to provide support to the Tri-Cities area of Washington. Whether a family is new to a diagnosis or has been traveling the path for awhile, Swindells Resource Center contains a wealth of resources and authentic support to help empower the entire family. Swindells Resource Center - Main Campus Providence Child Center 830 NE 47th Ave. Portland, OR 97213 503-215-2429 Swindells Resource Center – St. Vincent’s 9205 SW Barnes Road Portland, OR 97225 (800) 833-8899 x52429 In the Columbia Gorge, call 800-833-8899 x52429 Email: swindells@providence.org Website: www.ProvidenceOregon.org/Swindells Online Resource Library: http://bit.ly/ swindellsresourcecenter

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HEALTH + WELLNESS

Family Navigators After the Diagnosis: Family-Centered Support By John Krejcha A difficult challenge for many physicians and their medical clinics is how to effectively share the news of an autism diagnosis with a child’s parents or caregivers in a compassionate and educational way. Often these difficult conversations take place in a physician’s office immediately following a screening, and there isn’t much time for parents to process the information delivered before being sent on their way. Parents commonly report this experience as being very overwhelming. In Oregon, there is a pilot program underway to help better support families. It is called the “Family Navigator” program and is a two-year pilot program funded by Health Share of Oregon that has the potential to be replicated as a model in clinics throughout the state. For years, the Providence Medical Center in Portland, Oregon has been using a family-centered support approach when providing follow-up support to families directly after a diagnosis. Through the Swindells Resource Center located within the Providence Child Center, families receive direct support including access to a resource library, training classes, and speaker events. Families can access the Swindells Resource Center no matter where they received a diagnosis. (See article in Spectrums on page 38.) Diane Cervi, a parent from Portland, recalls her initial experience with Providence Child Center and Swindells after learning that her daughter was on the autism spectrum. “I quietly followed my child’s doctor into Swindells Resource Center still feeling in a state of stunned confusion about the news she had just delivered. I just kept thinking I need to find out more about autism and what to do now. The free resources they provided me were huge and invaluable to a parent like me who was new to this journey.”

Diane is now one of two Family Navigators that work within the Providence Children’s Developmental Institute (PCDI) clinics. She works with Carol Criswell, Family Navigator Program Manager. Since Swindells has a positive reputation family-centered approach, it naturally paved the way for the two-year pilot program to take place within PCDI clinics. What is a Family Navigator? The term “Family Navigator” appears in different healthcare settings throughout the United States but is a relatively new buzzword for local treatment centers in Oregon and Washington. As it pertains to the program at Providence, Carol Criswell explains, “Family Navigators are parents or caregivers who have first-hand experience raising a child with either a complex health condition or developmental delay who are embedded within the clinic and part of the medical care team. They are a bridge between family support and the clinic. They offer parent-to-parent emotional support, community resources, clarification of diagnosis, recommendations from the parent perspective, help accessing social systems, and other support. In addition, they give a family perspective to medical providers.” What is that first connection like? Jody Wright, Executive Director of Swindells Resource Center understands that when parents are coming in for support, it is meaningful to be able to connect with someone else who has been through or is experiencing a similar situation. She shares, “It is important for families to know that each of the staff members at Swindells is either a parent or family member to somebody with a disability and we want to provide authentic support and this is true with our Family Navigators.”

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Family Navigators, continued from page 36 Carol Criswell adds, “When we first meet with a family, we start with just connecting as people who know firsthand what it is to care for a child who has a special health care need. Families who emerge from an evaluation or diagnostic feedback session come out of the clinic with the full range of emotions – from feeling paralyzed and unable to process what they’ve heard to angry or terrified, and everything in-between. Many of us remember that once we heard “your child has ______,” we stopped being able to hear anything that followed. The support we provide is person/family centered and for some people, just knowing that we’re available provides reassurance. We usually start with ‘Hi, I’m glad to meet you. Tell me about you…’ Empowering Families When asked to describe the relationship between Family Navigators and parents, Carol shared, “Family Navigators walk shoulder to shoulder with families, encouraging and coaching along the way. Our approach is from the family perspective, balancing that with clinic priorities.” “Our goal is to encourage and empower families beyond the point of feeling that they need us. We want them to recognize their skills and abilities to navigate their journey while recognizing that there are resources and supports around them when they need them.” Family navigators focus on empowerment, outreach, system navigation and building community. • Empowerment – Navigators empower the family to help them identify strengths. The navigator will assist each family by asking questions, helping them prioritize their needs and access care and services. • Outreach – Navigators build a personal relationship with families and provide them emotional support. • Systems Navigation - Navigators help the family plan for follow-up appointments, share problem-solving skills, and assist with the navigation of the medical, educational, social services and community activities.

What advice is important to share with families new to diagnosis? Carol shares words of wisdom for Spectrums readers. “A diagnosis may provide some direction in next steps and give you some explanation about challenging behaviors or other difficulties your child is experiencing, but it does not define your child. No one knows exactly how a child will develop, so it is helpful to think ahead and be prepared. Your child will grow and develop into a unique person with gifts all their own. Remember to breathe and take time to process. Ask questions and ask for help but trust that you have the best interest of your child in mind, that you and your child have strengths and abilities and that you can do it!” For more information about the Family Navigator Program and Swindells services, call (503) 215-2429 or email: swindells@providence.org or visit: www. ProvidenceOregon.org/Swindells. After this pilot program has finished, there is hope that the Family Navigator model will be replicated across a variety of health-related settings.

• Building Community – Navigators help support the family to become more connected in their community and help identify other relevant and positive community support. Each Navigator has about 50 – 60 interactions monthly. As the support provided is person/family-centered, followup interactions between Navigators and families vary. Family Navigators support families on the phone as well as in-person. It is customary for a Family Navigator to follow-up after a few weeks from the first appointment to go through the diagnosis and recommendations with the parents, because for many, it takes time for them to process what the diagnosis means to the whole family. Additionally, not everyone receives a diagnosis or the diagnosis they suspect. Carol explains, “For some families, it is devastating to not get a diagnosis for their child who is struggling because parents struggle with next steps. We can support them during this as well and brainstorm resources and other supports.” www.spectrumsmagazine.org

therapy THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Consumer Advocacy in Autism Research........................................40 Partner Provider Directory.......................................................................44 Upcoming Autism Empowerment Events........................................46

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Choose Your Battles, Continued from page 31 on their own in order to grow, and as parents we often need to step aside and let them struggle, fail, or make decisions we wish they would not make. There are, however, some steps parents can take to help kids work through frustrations and find appropriate solutions. These can all be adapted for age, maturity, or developmental capability:

struggling or not making the decision I would wish him to make. Is there a teachable moment in the disagreement? Can our differing views be used to examine safety or being part of a family and community? How can our role as parents be seen as partnering with our child rather than battling against our children?

• Chore lists provide a guide for responsibilities of each member of the family and make everyone feel included and accountable • Daily schedules and behavioral expectation charts and diagrams provide structure and can provide a visual aide for everything from the day’s calendar to consequences for not completing homework or hitting siblings • Social narratives are created to teach appropriate behaviors in social situations I have had to come to terms with certain facts that do not always make this solution-focused mom feel very satisfied. When we do find common ground and a plan that works, there is no guarantee that what works today will work tomorrow. In choosing my battles, I sometimes just put off the ‘fight’ for later, or I compromise on a behavior that may be more of an issue for me than for him. I have learned I cannot always fix the problem and sometimes need to let him work it out on his own, even when I can see he is

I spend a lot of time trying to see beyond the surface and hearing what is really being said, especially when his words are hurtful. I am his advocate and safe place, and he needs to be able to unload on me to avoid unloading on others who will be less forgiving. In many ways, this has brought us closer together. He vents, we both get upset, I try (or don’t try) to make things better, we apologize when appropriate, and we move on. I choose my battles, sometimes wisely, and hope that the end results will reflect the hard work we have both put into navigating this journey together.

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.

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THERAPY

Consumer Advocacy in Autism Research

Autistic Advocate participates in Scientific Peer Review Autism advocate, Karen Krejcha from Vancouver, Washington, recently participated in the evaluation of research applications submitted to the Autism Research Program (ARP) sponsored by the Department of Defense. Karen was nominated for participation in the program by Autism Empowerment and was chosen because of her experience as an autistic woman, a parent of two sons on the autism spectrum and as an advocate and professional in the Autistic and Autism community.

The CDMRP fills research gaps by funding high impact, high risk and high gain projects that other agencies may not venture to fund. While individual programs are unique in their focus, all of the programs managed by the CDMRP share the common goal of advancing paradigm-shifting research. The ARP focuses on improving the lives of those living with autism spectrum disorder (ASD). Through the program’s areas of interest, the ARP focuses on ways to improve diagnosis, treatment and studying psychosocial factors for affecting key lifetime transitions to independence and a better life for those on the autism spectrum and their families. The immediacy of the ARP Vision, to improve the lives of individuals with autism now, has imparted a strong sense of action and continues to steer the investment strategy for the ARP. How do Consumer Reviewers fit in?

As a consumer reviewer for this Congressionally Directed Medical Research Program (CDMRP), Karen was a full voting member, along with prominent scientists, at meetings in Washington DC to help determine how the $7.5 million appropriated by Congress for the Fiscal Year 2016 (FY16) will be spent on future autism research. Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of autism research applications since 2007. Colonel Wanda L. Salzer, M.D., Director of the CDMRP expressed her appreciation for the perspectives of the consumer advocates in the scientific review sessions. “The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all scientists of the human element involved in medical research.” We recently caught up with Karen after her return from Washington DC to give Spectrums readers more of the details. First, congratulations! What exactly is the CDMRP? The Congressionally Directed Medical Research Programs (CDMRP) originated in 1992 via a Congressional appropriation to foster novel approaches to biomedical research in response to the expressed needs of its stakeholders - the American public, the military, and Congress.

The CDMRP welcomes patients, survivors, family members and advocates to play a pivotal role in the future of biomedical research funding. By integrating “consumers” into the scientific review process, the CDMRP is able to enrich and add authenticity to the scientific review by incorporating personal perspective, passion, knowledge and a sense of urgency. Over 2,000 consumers have served as Peer and Programmatic reviewers since 1995. By partnering with consumers, the CDMRP strives to find and fund collaborative research that discovers, develops and delivers health care solutions for Service members, Veterans, and the American public. Is it common to regularly include autistic and autism family input in Autism Research or proposal review? At the CDMRP? Yes. Elsewhere? Not so much. The CDMRP’s approach is refreshing, respectful and responsible. Hopefully, their transformational approach will get more attention in outside funding circles. There is a popular saying in disability rights and social justice circles, “nothing about us without us.” What that means is that program and policy decisions that impact a certain group of people (e.g. youth and adults on the autism spectrum) should not be made without the full and direct participation of members of the group(s) affected by those policies. Sadly, it is still uncommon for autism researchers to actively seek and include autistic adult input, Continued on next page

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Consumer Advocacy, continued from page 40 particularly in a way that does not resemble tokenism. Autism Empowerment encourages autistic inclusion in all levels of research, and it’s a viewpoint I strongly believe. Due to confidentiality restrictions, I am not allowed to discuss the specifics of conversations that took place while I served as a Consumer Reviewer. However, I did have the opportunity to engage in outside conversations with a wide range of prominent national and international scientists. Many seemed open and welcoming of the idea of involving autistic voices in autism research in a meaningful way. Are there certain qualifications to be a Consumer Reviewer? Consumer reviewers act as lay experts on their condition, injury or disease (depending on the particular research program). For the Autism Research Program, Consumer Reviewers would be described as adults identifying as autistic and/or as a family member or caregiver of a person on the autism spectrum. In my case, I identify as both autistic and a parent for two sons on the autism spectrum. Additionally, Consumer Reviewers must be an active participant in an advocacy, outreach or support organization in their local community and be nominated by that organization to serve. They need to be able to represent the views of their community, not just their personal perspective. They also must have an interest in expanding their personal scientific knowledge about autism. Nominees are screened based on a letter of support, a resume and a personal essay detailing the nominee’s involvement in advocacy (as appropriate) and their efforts to increase their own scientific understanding of their condition. Applications are reviewed and evaluated, and the final step involves a telephone interview. What is the Scientific Peer Review process? Scientific peer review is the first level of review for research applications that have been submitted to the CDMRP for potential funding. Scientific peer review panels for the Congressionally Directed Medical Research Programs typically include a Chairperson, a range of six to 20 scientist reviewers (selected on the basis of relevant scientific expertise), and two to four Consumer Reviewers. They are each given a number of applications to review. The panel deliberates on and scores the scientific merit of each application based on specific evaluation criteria. Scores and written comments (summary statements) from all panel members are then presented for the second level of the two-tiered review which is the programmatic review. Some panels meet online or through teleconferencing. Others, like the panel I participated in, met in person over a three-day period.

What kind of prep time was involved? Consumers are prepared for peer review in several ways. As a novice consumer reviewer, I was paired with a mentor, an experienced consumer reviewer who explained the “ins and outs” of the pre-meeting work and the meeting processes and procedures. I also participated in online and live training presentations and received a handbook that provides an overview of peer review, policies, procedures, and guidelines, as well as helpful advice gathered from experienced consumer reviewers on how to approach reviewing the application. Being on the spectrum and not knowing what to expect, this mentoring process was very useful. My mentor and all of the technical and scientific support staff that I worked with both online and in-person were outstanding. Although application review time varies among consumer reviewers, in general, it takes approximately 40 hours of pre-meeting preparation in the one to two months before the peer review meeting. Are you allowed to discuss the applications? Unfortunately, that’s classified! I can say though that the proposals I reviewed for the Autism Research Program were by-and-large fascinating and diverse. Consumer reviewers don’t have to read every part of every proposal, however I often did. I wanted to make sure when I was making comments and engaging in discussion with other scientific reviewers, that I would present thoughtful comments and give authentic feedback that reflected the views of many within the autism community. Continued on next page www.spectrumsmagazine.org

Consumer Advocacy, continued from page 41 I recently had the honor of being profiled for Autism Acceptance Month on the CDMRP website. Those who are interested can check that out here: http://cdmrp.army.mil/CWG/stories/2017/karen_ krejcha_profile For any scientists, educators and practitioners out there reading this, PLEASE do include male and female autistic voices in the development of your research proposals and throughout the entire process. Presume competence and do not assume that youth and adults are not able to valuably contribute. There are many of us out here willing to share our expertise. All you need to do is ask. I also highly encourage anyone in our local autism community who is interested in contributing to the future of autism research to consider becoming a Consumer Reviewer. The CDMRP is regularly recruiting, and itâ&#x20AC;&#x2122;s a life-transforming experience. More information about the Department of Defense ARP Research Program is available at the website: http://cdmrp.army.mil Media contact: Gail Whitehead, Public Affairs, 301-619-7783 Email: patricia.g.whitehead4.ctr@mail.mil Is there anything else youâ&#x20AC;&#x2122;d like to share about your experience? I was delighted with how professional and pleasant the whole experience was from start to finish. The staff were fantastic with their accommodations, and whenever I had a question about the process, I received an answer quickly. The most difficult part was my own challenges trying to navigate my way through Dulles International Airport! On the first day in DC, I had the opportunity to sit in an orientation with other consumer review panelists. There were two of us that were there for the Autism Research Program and the rest were there as consumer advocates for a wide range of medical conditions. I wondered initially whether or not my scientific peers would welcome and embrace me in the process, particularly since they had so many years of experience in their field. Having many years of being autistic under my belt, I knew Iâ&#x20AC;&#x2122;d hold my own there but would I be taken seriously without a Ph.D after my name? I am pleased to report that I felt very respected and encouraged to share my thoughts. On more than one occasion, another panelist revised their scoring and comments based on something that I had shared. Throughout the process, I gained a deeper appreciation for the men and women who devote their careers to improving the lives of youth and adults on the autism spectrum. I also feel better equipped in my role at Autism Empowerment to interact with diverse members of our community of all ages and abilities.

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Free Resources... for Parents and Caregivers of Children with Autism from Seattle Children’s Autism Center

The world of autism spectrum disorders is constantly changing and we at Seattle Children’s Autism Center are eager to share with parents and caregivers the latest therapies, research, news and tips for families.

1. The Autism Blog

theautismblog.seattlechildrens.org We provide information that may be helpful for raising a child with autism. Posts are written by 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 james.mancini@seattlechildrens.org or 206-987-3481.

www.spectrumsmagazine.org