Outreach2020 CONNECTING OUR COMMUNITY & RAISING AWARENESS ABOUT AUTISM VACCINE TALK Whatgender Does the Research Show? Page 22

Outreach2020 CONNECTING OUR COMMUNITY & RAISING AWARENESS ABOUT AUTISM VACCINE TALK WhatGender does the research show? Page 22

MEANINGFUL WORK Experts study symptom SSP America hires differences between girls adults with autism GAPand boys with autism Page 30 Page 26 EARLY DETECTION Research study helps family obtain early diagnosis Page 32 NODA AT WORK Smartphone app speeds up diagnostic process Page 30

CYBER SAFETY Grant helps SARRC launch online safety curriculum Page 32

SIBSHOPS Sisters advocate for sibling support program Page 37

2020 | 1 | OUTREACH

Contents 26 GIRLS & AUTISM For Michele Thorne and her family, the journey to receive a diagnosis of autism for her son and daughter differed greatly. SARRC experts have been taking a closer look at the autism gender gap because

Features symptoms can vary for girls and boys. 30 EXPEDITING THE DIAGNOSTIC PROCESS A smartphone-based app developed by SARRC with the Georgia Institute of Technology and Behavior Imaging Solutions is now being page 26 widely used for all clients younger than 6. Research studies show families receive a diagnosis 50% faster with NODA™ than traditional in-person assessments. 32 FUTURE OF CYBER SAFETY & AUTISM Thanks to grant funding from NEXT for AUTISM, SARRC is developing a new online safety curriculum that will provide effective teaching strategies for navigating the internet for people with ASD as well as their families. 35 JUMPSTART LEADS TO A NEW JOURNEY When Allyson Perreault received a diagnosis of autism for her page 30 4-year-old son, SARRC’s JumpStart® program helped her navigate a new course for her family. Her experience eventually led her to pursue a career change – she is finishing up a master’s degree in applied behavior analysis.

4 Comments 18 Giving Back 39 Community Impact 5 Vision 22 s FAQ 41 Get Connected 7 Board Update 23 Preguntas Frecuentes 46 Financials 9 Noteworthy 24 Breakthroughs 10 In Brief 37 Voices

Departments On the Cover: MARIA THORNE page 32 PHOTO: STEPHEN G. DREISESZUN/VIEWPOINT PHOTOGRAPHERS STEPHEN G. DREISESZUN/VIEWPOINT PHOTOGRAPHERS (1) PHOTOGRAPHERS G. DREISESZUN/VIEWPOINT STEPHEN

SARRC’S Beneficial Beans creates YOUR DONATIONS opportunities for adults with autism AT WORK who are working toward meaningful, Learn how your support makes a community-based employment. difference at autismcenter.org/yourgift

Participate | Shop Signature Products | Volunteer

Learn more at autismcenter.org/beneficialbeans

2020 | 3 | OUTREACH

Your Thoughts 2020 • Volume 14 MANAGING EDITORS Stephanie Jarnagan

Comments Karen Scott

ART DIRECTOR Tamara Kopper

PHOTOGRAPHERS FACEBOOK Stephen G. Dreiseszun/Viewpoint Photographers I am amazed at the difference in Miss Adalynn. The differences this Allison Anne Johnson Photography program has made in her life, her family’s and how she is managing CONTRIBUTORS day-to-day situations is simply astounding. Niamh Campbell - Marina Henk Borgmann Stephanie Conner Michelle Glicksman SARRC helped get my daughter diagnosed. They used NODA Natalie Jasso program to do so and then they told me what to do next so I Maureen Jorden Amy Kenzer wasn’t left confused. I also love how they’re charitable too, especially Andrea Levy working with the community like Studio Movie Grill as one example. Daniel Openden -Rosemary Keller Beatriz Orr Beth Salazar Ginger Scott-Eiden INSTAGRAM Christopher J. Smith Lauren Smith So much incredible energy today at the 14th Annual @autismspeaks Walk in partnership with @SWAutismCenter! It was my 3rd year SARRC LEADERSHIP emceeing, and there were over 500 teams, around 10,000 participants! Daniel Openden, Ph.D., BCBA-D, The Walk also raised a total over $585,000! Truly inspiring!!! President and CEO Larry Hillwig, Chief Administrative Officer -@ChelseyDavisTV Maureen Jorden, Chief Development Officer Amy Kenzer, Ph.D., BCBA-D Vice President of Clinical Services I still can’t believe this happened ($100,000 Devin Andrea Levy, CPA, CFE, Chief Financial Officer Booker Starting Five grant to SARRC)! Definitely one Christopher J. Smith, Ph.D., Vice President, of the highlights of 2019, @SWAutismCenter is such Research Director Rachel A. Anderson, M.A, BCBA, an amazing asset to kids on the autism spectrum Children’s Services Director and their families. Thank you @DevinBook for this Devon Graham, Human Resources Director amazing honor! Wade Newhouse, IT, Facilities Director -@EsauPearl Paige Raetz, Ph.D., BCBA-D, Teen and Adult Services Director @SWAutismCenter you are by far one of the best nonprofits Raun Melmed, M.D., Medical Director, in Arizona. I know I will never forget my experiences there SARRC Co-founder at the Employment Services center! #KeepGoingStrong Outreach is published annually by the #ChangeTheWorldOfAutism Southwest Autism Research & Resource Center -@Adam_Pitts 300 N. 18th St., Phoenix, AZ 85006 JOIN THE CONVERSATION CONTACT INFO Facebook.com/SouthwestAutism 602.340.8717 Instagram: @SouthwestAutism [email protected] LinkedIn: linkedin.com/company/sarrc SPECIAL THANKS Twitter: @SWAutismCenter to the writers, editors, photographers and designers who contributed in-kind YouTube: @SouthwestAutism time and service to SARRC.

OUTREACH | 4 | 2020 Vision H OUTREAC | 5

2020 | 2020 MESSAGE FROM THEMESSAGE PRESIDENT FROM & CEO You Here For BCBA-D PH.D., OPENDEN, DANIEL BY We pivoted to telemedicine, allowingprovide us to pivoted We their regular uprooted therapists our Finally, in this sudden change with people autism, Like exposure for our therapists and families, we decided we and families, therapists for our exposure with one only to work to schedule only one therapist in and going therapists to several opposed as family, families. of the homes of multiple out for supervisionremote coaching therapists, for our teens and adults for our and 1:1 therapy parents, our Thankswith autism. to technology that SARRC been able families have the last year, over introduced critical remotely most programs some of our to access instance, the the coronavirus pandemic. For during mobile app lets families seeking a diagnosis NODA™ home, from an evaluation for their child receive allowing them to maintain their appointments. JumpStart®, began transitioning we And in 2019, for newly program diagnosed flagship six-week our format, makingfamilies, to an online, e-learning the to coming without accessible completely program SARRC. and became essential our schedules overnight healthcare They heroes. made the difficult shift from with clients to working only withworking several every of one child, teen or adult with autism day every of every put week they month. And selflessly at risk as they SARRC’s rallied around themselves commitment to supporting with a relentless mission families and clients. our all of us, and we’ve been easy for any hasn’t routine been able we’ve had to learn As for SARRC, to adapt. to do so because, this community years, has for 23 for us. And it is this community that willbeen here partner, as an essential SARRC continue to stand by this challenge, not only overcome we’ll and together, than ever. stronger emerge but

any people with autism struggle with people autism any the smallestimmensely with even Parents disruptions in their routines. the very to take often learn way the hard

And the truth is… changing routines is not so easy. is not so easy. routines And the truth is… changing it all in comparison of this pales to what Yet of balancing handle the stress parents would How would only one option: We was there SARRC, For to ensure programs our quickly modified SARRC

Over the span of a weekend in early March, SARRC in early SARRC March, Over the span of a weekend down programs all group to shut of our forced was due to the coronavirus, affecting 125 between children PEERS 60 teens in our preschools; inclusive two our who 70 grandparents programs; Works and Community Support regularly monthly Grandparents attend our new and the launch meetings; of our Sibshops Group We with of children for siblings autism. program adults of our many after heartbroken watching were succeeding competed for and were who with autism, economy in their jobs, become victims slowed of our unemployment rising country’s rapidly and join our rate. for their if treatment families mean for our would suddenly camechildren to an abrupt stop. and siblings home, homeschooling from working about And what only therapist? their child’s becoming and looking for answers worried are who the parents their only to have development their child’s about diagnostic canceled appointments and the start of delayed? further treatment in routine. to adapt to a sudden change have minimize the risk of continued. To treatment same route to school each day, or that their child will each to school day, same route nuggets,chicken of or that the 43 eat only one brand in bed must be put stuffed animals on their child’s the exact every same place day. M ALLISON ANNE JOHNSON PHOTOGRAPHY JOHNSON ANNE ALLISON Thank you for helping us help our community.

UnitedHealthcare Community Plan is proud to collaborate with our community partners to help build healthy, inclusive communities for all.

Contract services are funded in part under contract with the State of Arizona. CST24090 2/19

CST24090_AZ19_SW_Autism_R&R Mag Ad.indd 1 2/7/19 6:40 AM

Round Team Project Details Specifications Copy: Software: InDesign CC2018 Color(s): 4/0 1 Base Design: mike File Name: CST24090_AZ19_SW_Autism_R&R Mag Ad.indd Bleed: none Layout: nate RGL: Resolution: vector UHC_CS Production: amy Project Notes: Flat: 3.875x4.75” Mkt Mgr: stacy @100% Job: CST24090

PRODUCTION

OUTREACH | 6 | 2020 Board Update Board SARRC Welcomes 4 New Board Members SARRC is pleased to welcome Lev Gonick, Jason Lattin, 2020 SARRC Kim Shepard and Scott Wallace to its board of directors. BOARD OF DIRECTORS

Lev Gonick OFFICERS Arizona State University, Nicole Goodwin, Chair, Greenberg Traurig, LLP, Chief Information Officer Managing Shareholder Lev Gonick is an educator, technologist and smart Greg Wells, Vice Chair, Blue Cross Blue Shield city architect. He has been teaching, working and of Arizona, Vice President, Human living on the net for more than 25 years. Prior to his role at ASU, Resources & Employee Development he served as co-founder and CEO of DigitalC, an award-winning Christine Wilkinson, Ph.D., Vice Chair, Arizona nonprofit enabling and celebrating innovation, collaboration and State University, Senior Vice President and productivity through next-generation broadband networks, big Secretary of the University open data solutions and IoT for public benefit. Inside Business Monica Coury, Secretary, Arizona Complete Magazine named Gonick one of its “Power 100” in 2015. Health, Vice President, Legislative & Government Affairs Jason Lattin, CFA Gary Jaburg, Executive Committee Member at BMO Private Bank, Large, Jaburg & Wilk, P.C., Managing Partner Regional Director Scott Wallace, CPA, Treasurer, Wallace Jason Lattin oversees the development and delivery Plese+Dreher, Principal of investment management and advisory services to Daniel Openden, Ph.D., BCBA-D, ex-officio, high net-worth individuals, families and organizations, including SARRC, President and CEO endowments and foundations, throughout the Western U.S. He has 20 years of experience in financial services. Additionally, he MEMBERS worked as a software consultant training bank treasury departments Neil Balter, Closet Guru in the U.S. and Latin America on how to use an interest rate risk Gregory Bernosky, Arizona Public Service, management program. Lattin holds the Chartered Financial Analyst® Director of State Regulation and Compliance designation. Michael Bill, MJ Insurance, CEO Chadwick Campbell, Thomas Title & Escrow, Kim Shepard Senior Counsel Cigna-Arizona, President Pearl Chang Esau, Shàn Strategies, CEO Kim Shepard is the market president for Cigna in Lev Gonick, Arizona State University, Arizona. She is responsible for driving market growth Chief Information Officer by creating customer value and ensuring that the Tom Harris, Arizona Diamondbacks, local market strategy, product and network offerings meet evolving Executive Vice President and customer and client needs. She also partners with area healthcare Chief Financial Officer professionals and health systems, including Cigna Medical Group, to Jason Lattin, CFA, BMO Private Bank, help improve the health of Cigna customers and lead Cigna’s efforts Regional Director to serve the communities of Arizona. Shepard has been with Cigna Ken McElroy, MC Companies, CEO for more than 18 years and has served in various leadership roles in Jamie Price, Advisor Group, President & CEO both Texas and Arizona. Kim Shepard, Cigna-Arizona, President

Scott Wallace, CPA EMERITUS MEMBERS Wallace Plese+Dreher, Principal Denise D. Resnik, Founder & President/CEO, ® Scott Wallace specializes in litigation support First Place AZ; SARRC Co-founder services throughout Arizona and has more than Howard Sobelman, Esq., Partner, Snell & three decades of experience as a CPA. Serving as a Wilmer LLP consultant and expert witness to individuals and Arizona businesses, he has testified in state and federal courts, including Thank you to the directors the U.S. Bankruptcy Court for the District of Arizona. As a court- who completed terms in 2019: appointed expert, attorneys rely on his extensive knowledge of Amanda Aguirre, Dan Coleman, financial statements and customary business and accounting practices Meighan Harahan and Jim Waring for building legal strategy.

2020 | 7 | OUTREACH Snell & Wilmer is proud to support the Southwest Autism Research & Resource Center.

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HOWARD I. SOBELMAN | 602.382.6228 | [email protected]

ONE ARIZONA CENTER | 400 EAST VAN BUREN STREET | SUITE 1900 | PHOENIX, ARIZONA 85004

PHOENIX | PORTLAND | RENO | SALT LAKE CITY | SEATTLE | TUCSON | WASHINGTON, D.C. ARA Arizona Our best investments Residential are priceless Architects You can’t put a price on the things that matter most. That’s why U.S. Bank Private Wealth Management is proud to help fund Southwest Autism Research & Resource Center. We know A distinguished organization that contributing to our community changes lives for the better. Thank you for working toward the of 15 leading architectural greater good in our community. firms that proudly supports Tim Hoekstra, Private Wealth Advisor SARRC [email protected] l 480.494.8363

OUTREACH | 8 | 2020 SARRC Noteworthy HAS Schimmel, Thompson 38 Present at ABAI Conference BOARD n February 2020, Kelsey Schimmel, M.Ed., BCBA, and Holland CERTIFIED IThompson, M.Ed., BCBA, from SARRC’s Community School BEHAVIOR attended the Association for Behavioral Analysis International (ABAI)’s Autism conference in Miami. The two shared work ANALYSTS® they completed surrounding innovative interventions they ON STAFF. have designed for preschool-age children with a diagnosis of MORE THAN autism. Their work focuses on increasing early communication skills in the context of an inclusive preschool setting. Having the Holland Thompson and Kelsey 90 PERCENT Schimmel at ABAI conference in opportunity to attend this conference and share their work is Miami. OF OUR STAFF something Schimmel and Thompson feel passionately about and EARNED THEIR aligns with SARRC’s mission to advance research and provide a BCBA lifetime of support for individuals with autism and their families. WHILE WORKING AT SARRC. THIS IS THE Raetz Joins International HIGHEST Autism Panel in Sweden NUMBER OF n fall 2019, SARRC’s Director of Teen and Adult Services BCBAs IN A IPaige Raetz, Ph.D., BCBA-D, was invited to speak on a SINGLE panel entitled, “Supporting Individuals With Autism Spectrum Disorder in the Successful Transition to Adulthood: Pathways, ORGANIZATION Pitfalls and Progress,” at the Association for Behavior Analysis IN ARIZONA. International-International conference, held in Stockholm, From left: Eileen Hopkins, Ph.D. (Eden II Programs), Randy I. Horowitz, MSEd Sweden. Dr. Raetz and other experts on the panel shared (Nassau Suffolk Services for Autism), insights with an international audience about effective ways Paige Raetz, Ph.D., BCBA-D, LBA (SARRC), of supporting adults with autism spectrum disorders (ASDs) Joanne Gerenser, Ph.D., CCC-SLP (Eden II Programs). in developing independence.

EMPLOYMENT ANNIVERSARIES 15+ YEARS Will Kirwan Brianna Conners Wade Newhouse Rachel Anderson JoAnn Larkin Jennifer Donato Paige Raetz Addie Mocca Amanda Malligo Cristina Fauste Amie Roden Sharman Ober-Reynolds Megan Mann Amber Feick Hanna Roen

Letty Mendez Mary Hill Beth Salazar 10+ YEARS Daniel Openden Maria Holguin Kelsey Schimmel Alexis Boglio Beatriz Orr Katie Hoyle Jillian Schneider Chris Boughton Christopher J. Smith Stephen James Brent Seymour Stephanie Brockman Katrina Warriner Natalie Jasso Erica Skepnek Bethany Chadd Maureen Jorden Amanda Sumney Pilar Dowling 5+ YEARS Amy Kenzer Julie Tyma Christine Gomez Monique Auger Sienna VanGelder Jill Haglund Will Bassler Elyse LaFarelle Brittani Harris Emily Blazev Nicole Matthews Kelsee Mullen Brad Herron-Valenzuela Yvonne Cass

2020 | 9 | OUTREACH OUTREACH In Brief | 10 The FRIEND children with social challenges. challenges. social children with play-based program tohelpschool-age designed and communication FRIEND® Program, asocial formerSARRCpartnership with onthe experts FNP, MSN, Reynolds, publishedamanualin Christopher J.Smith,Ph.D., Ober- andSharman Published, SoldonAmazon | FRIEND was designed with educators and FRIEND was educators with designed SARRC members Research staff Department 2020 distance, includingoutofstate,personalized telehealthoptionsare now available. offersonlineeducationand in-personcoachingsessions.Forcampus, JumpStart familieswholive ata theirchild’ssupport communication.Inthenew, expandedmodel,for familieswholive nearSARRC’s alsoprovidesJumpStart informationonPivotal Response Treatment (PRT) togive parents strategies to receiving adiagnosis ofautism. decisions fortheirchildafter astheybegintomakesupported and caregivers feelconfidentand critical information,soparents is designedtoprovide accessto state and out-of-country. JumpStart families livinginArizona, out-of- JumpStart JumpStart Everywhere Everywhere to Families Now Available Learn more atautismcenter.org/jumpstart . SARRC’s flagshipprogram, ® , isnow available to with their social skills in everyday ineveryday skills theirsocial with needtosupport students educators that the strategies this manualprovides used incombinationorindividually — Playground Program —which be can Lunch Program andFRIEND Sensitivity Curriculum, FRIEND components including thePeer building Focused strategies. onthree skill- social for children tolearn an inclusive atmosphere and safe parents inmindwho want tocreate ® Program Manual

“The FRIENDProgram.” “The situations throughout theirschoolyears. ‘Best Placesto Work’ SARRC NamedAmong this honormultiple times. Survey. SARRC isproud tohave beenarecipient of employees’ toWork responses Places totheBest are determinedexclusively onthebasisoftheir Work” for2019 by. Winners the Phoenix Business Journal Purchase your copy by own searching onAmazon SARRC was namedamong to Places the“Best

SARRC President and CEO Honored as ‘Nonprofit Executive of the Year’ SARRC President and CEO Daniel Openden, Ph.D., BCBA-D, was selected as the “Nonprofit Executive of the Year” by AZ Business Angels. The award ceremony celebrated nonprofit and for-profit leaders, their organizations’ missions, and the people who work tirelessly to serve them. There were 14 awards presented with SARRC as its clinical operator, this unique, to individuals, nonprofits two-year independent life-skills residential program is and for-profit organizations yielding positive outcomes and propelling graduates that focus on corporate forward on their quests for employment and more philanthropy. independent living. It has also caught the attention of the Arizona Promising Outcomes Department of Economic Security. Qualified Academy at First Place-Phoenix’s participants who are members of the Division of Transition Academy Developmental Disabilities (DDD) and eligible for Measurable outcomes are the all-important goal long-term care can receive Arizona Long-Term Care when it comes to establishing credibility and the System (ALTCS) supports from SARRC to offset potential for public funding. While often a long, hard the cost of participation. Private-pay costs now only slog, it can also be a path of steady progress holding include rent and amenities, since DDD provides the much promise for us all. funding for long-term care services. Based on initial First Place–Phoenix’s Transition Academy has been results, First Place–Phoenix’s Transition Academy is building momentum. After five years of collaborating definitely on the right path!

Transition Academy Outcomes ®

First Place® AZ is a nonprofit founded in 2012 that serves adults with autism and other neurodiversities through thoughtfully designed housing with supports. First Place–Phoenix offers programming for daily living and socialization skills, vocational development and a robust on- and off-site community life 28% of for apartment residents and Transition Academy participants. Learn more at graduates tried firstplaceaz.org. living outside family home prior to enrollment 94% were employed upon 50% of graduation. graduates had never been 55% choose 89% employed prior to live at a live in their to enrollment. First Place community property. of choice after program completion.

39% of graduates are from out of Graduate Skills state. • Achieving personal goals • Connecting with others • Maintaining an apartment • Conducting a job search Outcomes are based on the First Place • Navigating the community Transition Academy program, including the • Planning & following through Learn4Independence® curriculum, administered by our clinical operating partner, the Southwest Autism Research & Resource Center (SARRC).

2020 | 11 | OUTREACH SARRC, Arizona Children’s Association Increase Access to Services In 2019, SARRC and Arizona Children’s Association (AzCA) announced a new partnership to expand services for families and their children with a diagnosis of autism. As part of the partnership, SARRC will share valuable resources with AzCA as they work to grow their services for their clients with autism across Arizona. Founded over 100 years ago, AzCA is the largest statewide comprehensive nonprofit agency in Arizona and has locations in all 15 counties. Together, we are supporting SARRC’s strategic plan to put effective services within reach of every Arizonan. Intermountain Centers for Human Development Launches JumpStart SARRC and Intermountain Centers for Human Development (ICHD) have joined forces to deploy JumpStart® at ICHD. This partnership will expand access to in-person JumpStart coaching sessions for families living near an ICHD clinic. JumpStart has been in operation for more than 17 years and is the longest running clinical program at SARRC, serving more than 750 families in the Greater Phoenix community in just the last decade. Summer Camp Opportunities Abound In an effort to build more inclusive communities, SARRC partners with numerous organizations that offer summer camps in Arizona. SARRC’s 2020 summer camp partners include the Arizona Science Center, Camp Daisy and Harry Stein, Camp Simcha, Children’s Museum of Phoenix,

The Phoenix Theatre Company and the University THEATRE PHOENIX OF COURTESY PHOTO of Advancing Together, we create Technolog y. Each of these a better community. entities offer inclusive Cox Communications celebrates our friends and recreational neighbors who have created and cultivated opportunities a strong community. for all children and young We proudly support Southwest Autism adults, including Research & Resource Center. those with a Find out more at cox.com diagnosis of autism.

OUTREACH | 12 | 2020 In Brief H OUTREAC | 13

2020 | 2020 2019 Event & Partnership Highlights & Partnership 2019 Event SARRC celebrated its 21st Annual Community Breakfast event on May 9, on May 9, event its 21st Annual Community Breakfast SARRC celebrated Nearly 1,500 guests attended the event, themed Next is Now — a nod to — a nod to themed Next is Now Nearly 1,500 guests attended the event, SARRC’s new strategic plan that will put effective services of plan that will put effective within reach new strategic SARRC’s 2030. by Arizonan every SARRC Celebrates 21st Annual Annual 21st Celebrates SARRC Resort. Biltmore 2019, which was held at the Arizona Community Breakfast Community Clockwise, above: Speaker Speaker Clockwise, above: his shares Zachary Brown journey with employment nearly 1,500 guests; Stephanie GaryPapadopoulos, Jaburg, Susan Donaldson, Julie Alpert; and audience at the Breakfast Ethan Chuck Heimerdinger, Sobelman and Sanders, Howard Cindy Sanders. 2019 Event Highlights In Brief

14th Annual Autism Speaks Walk in Partnership with SARRC. The annual event raised in Partnership with SARRC Draws $600,000, half of which goes to the important national 10,000 Participants initiatives led by Autism Speaks and the other half to support local families through SARRC’s innovative On Sunday, Oct. 27, 2019, 10,000 people and 500 research and programs. teams from around the state gathered at Tempe For more information about the 2020 Walk event, Beach Park in support of the Autism Speaks Walk visit autismcenter.org/2020walk.

GT is proud to support SARRC We applaud its mission to advance research and provide a lifetime of support for individuals with autism and their families.

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OUTREACH | 14 | 2020 SAVE THE DATE: WE’RE MOVING!

We’re excited to share that the 15th Annual Autism Speaks Walk in partnership with SARRC is moving to Sloan Park, spring training home of the Chicago Cubs.

Sloan Park 2330 W. Rio Salado Parkway Mesa, AZ 85201

Saturday Oct. 17, 2020 8-11 a.m.

EVENT HIGHLIGHTS: i5k & 1-mile Family Friendly Route iWalk Kick-Off Festival with Autism Resource Fair & Kids' Zone iFinish Line Celebration in Sloan Park iKids' Fun Run Around the Bases Register your team at autismcenter.org/2020walk For a list of all upcoming SARRC events, visit autismcenter.org Thank you to our 2020 Walk Chair: Gregory Bernosky & family We bring you the best of both worlds: the capacity and sophisticated product offerings of a big bank along with the responsiveness and superior service of a more specialized institution.

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OUTREACH | 16 | 2020 Because You Asked: In Brief How You Can Help SARRC There are several ways to support SARRC, but financial gifts are most needed at this time. However you decide to contribute, know that you are helping to advance SARRC’s mission to advance research and provide a lifetime of support for individuals with autism and their families. For the third consecutive year, SARRC 18th Annual Operation has been awarded the Platinum Seal of Santa Claus Transparency by Guidestar, the highest level a Thanks to our friends at nonprofit organization can receive. We were Sanderson Ford, SARRC has also awarded the coveted 4-star rating from been a proud partner and charity Charity Navigator for the 4th consecutive recipient of Operation Santa year, an accomplishment that only 20% of Claus for the past 18 years. the charities they evaluate receive. These Throughout the 2019 holiday two designations recognize SARRC’s season, Sanderson Ford hosted transparency, impact and effectiveness, and numerous events around the reflect the outstanding work of SARRC’s teams. Valley collecting thousands Make an online gift today at of food items, toys and cash autismcenter.org/donate. If you would rather make donations to support participating a gift over the phone, please call SARRC at charities. 602.340.8717.

SOUTHWEST AUTISM RESEARCH & RESOURCE CENTER LEADS THE WAY IN IMPROVING THE LIVES OF THOSE WITH AUTISM.

Fennemore Craig is thrilled to be part of the innovative practices of SARRC and their dedication to education and community outreach.

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CHARLES MARKLE Attorney 602.916.5433 | [email protected]

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2020 | 17 | OUTREACH Leaving a LEGACY

Giving Back Giving SARRC’S LEGACY CIRCLE was established to create and allows for the continued expansion of essential an endowment fund for the long-term needs of services for the years ahead, despite economic individuals with autism and their families. This circle conditions. of ongoing support was formed to honor some of our To learn more about SARRC’s Legacy Circle most loyal donors for their commitment to SARRC’s or upcoming events, please visit mission. autismcenter.planmylegacy.org or contact A gift to the Legacy Circle is a long-term investment Planned Giving Manager Beth Salazar at in the research, programs and services of SARRC 602.606.9876.

Arizona as a state is still in its youth, and it is a place where even people who aren’t billionaires can make a difference. A legacy gift here in our community is an investment that will make a real impact. Three hundred years ago, endowments were started in Boston and other major cities, [and now] their arts and other community organizations are all well-endowed. We’re proud legacy givers — the future of our community depends on those with vision to leave behind gifts that will sustain us long into the next century. Rose & Harry Papp SARRC Legacy Circle Members

LEGACY CIRCLE MEMBERS Neil & Lynn Balter* Meighan Harahan* Dale E. Nelson Megan Selvey Roberta Balter Tom & Kathleen Harris* Tim & Sarah Newquist* Howard & Wendi Sobelman* Timothy & Diane Bolden* Larry & Diane Hillwig Erica & Daniel Openden* Karen L. Starbowski Kathy & Mike Bosco* J.W. Holmes* Kim & Dan Owens Annette L. Stertzer Chadwick & Elana Campbell Sean & Melissa Husmoe* Socrates & Stephanie Sunshyne Trust* Joseph T. Clees Gary Jaburg* Papadopoulos* Daron Sutton* Roger & Victoria Cohen Maureen & William Jorden Harry & Rose Papp Emily Taylor Dan & Paula Coleman* Claire & Brian Kelley Craig O. Pearson* Thiru & Thamiya Dave & Peggy Cottle* Jeri & Brent Kendle* Sergio & Sarah Penaloza Andy & Jacquie Weflen Karen Donmoyer The King Family Living Trust Desiree & Greg Wells* Patti & Herb Dreiseszun* Robin Cochran Kruger Stella & Jamie Price Ron West Irene & Sherman Dreiseszun Kimberly & Norm Kur Rob & Denise Resnik Lawrence & Susan Wilk Neil & Marjie Dreiseszun Andrea Levy Family Trust* Anonymous (7)

Mac & Pearl Esau Rob & Tracy Lloyd Phyllis & Howard Rosfeld* Essential Nourishment Cathy Luebke Beth & Charles Salazar* *Legacy Circle Founding Members Paula Friedlund Kat & Mike McMahon Eric Schechter Nicole M. Goodwin* Helen & Raun Melmed* Debbie & Mark Schwartz* We apologize for any omissions Joy & Laurence A. Gross Addie & Joe Mocca* Ken & Heidi Scott* due to the publishing deadline.

OUTREACH | 18 | 2020 Special Giving Back Donors Who Make a THANKS to our corporate DIFFERENCE and foundation donors Arizona Cardinals Charities FLINN FOUNDATION Arizona Community Foundation In 2019, the Flinn Foundation Arizona Diamondbacks Foundation announced its support of SARRC Arizona State Council Knights of Columbus through a grant of $100,000. This Bank of America Charitable Foundation generous contribution is funding two Barnes Family Foundation innovative projects. Bashas’ Family of Stores The first project focuses on BHHS Legacy Foundation expanding technology by enlisting a Blue Cross Blue Shield of Arizona consultant to conduct a market analysis CarMax Foundation of JumpStart® and develop a plan for disseminating the Charles A. Sullivan Charitable Foundation application to reach more individuals with autism and their Cigna HealthCare of Arizona families throughout Arizona. The second project will focus Community Foundation for Southern Arizona on evaluating the outcomes of children in the Community School program in comparison to children who receive Cox Charities treatment elsewhere. Ethel J. Scantland Foundation With the generosity of the Flinn Foundation, SARRC can Executive Council Charities continue its efforts to put critical services within reach of Faye & Lee Alport Foundation every Arizonan and demonstrate the effectiveness of SARRC’s Fiesta Bowl Charities Community School program for the development of young Flinn Foundation children with ASD and their typically developing peers. Ford Motor Company Fund Interest Ministries ISA Foundation PHOENIX SUNS CHARITIES Jaburg Family Foundation As a key partner, Phoenix Suns Louis Foundation Charities continues to support SARRC MAC6 through funding mission-critical Moreno Family Foundation programs, services and innovative Morgan Family Foundation projects. In late 2019, Suns guard Devin Phoenix Suns Charities Booker and the Phoenix Suns Charities Raceway Express Car Wash honored SARRC as one of the “Devin Round It Up America Booker Starting Five” grant recipients. Last year, Booker Salt River Project pledged a $500,000 annual contribution to Phoenix Suns Sanderson Ford Charities for five consecutive years. Sunstate Equipment Foundation SARRC was awarded $100,000 to fund the expansion Teaumen & Grace Fuite Foundation of our Community School to a third campus and enhance The Charro Foundation our Phoenix Campus playground with the addition of the The Hartford Phoenix Suns Charities Slam Dunk Corner. Through the The Kemper & Ethel Marley Foundation generous funding of Booker and the Phoenix Suns Charities, The Molly Lawson Foundation SARRC will continue to build inclusive communities and Virginia G. Piper Charitable Trust improve the quality of life for children and their families Walmart throughout Arizona. Wee Care Child Development Center

2020 | 19 | OUTREACH YOUR BUSINESS IS OUR BUSINESS.

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Call on us. mstsolutions.com

OUTREACH | 20 | 2020 Giving Back Become an MVP: Multiyear Visionary Partner

SARRC’s Multiyear Visionary Partner (MVP) program is an opportunity for annual donors to make a multiyear gift of five LEARN MORE years or more that will be invested into our vital programs, services and research. Become an MVP and Make a difference by becoming an MVP and joining a support the life-changing programs community comprised of SARRC’s loyal supporters. MVPs are and research carried out by SARRC. driven by a vision where people are meaningfully integrated into Contact Maureen Jorden at inclusive communities — empowered to make friends, learn, live 480.603.3292 or and work in the community. [email protected] or visit autismcenter.org/MVP

SARRC MVPs AS OF FEBRUARY 1, 2020

GOLD ($10,000+) Barbara and Daniel Brady Teri and Tyson Kelley Susan and Michael Reina Laura and Mike Bill Bonnie and Jon Brovitz Tonya and Christiaan Kelly Denise and Rob Resnik Kathryn G. and Chris Camacho Mackenzie Fitz-Gerald and Laure and Chris Reynolds Michael A. Bosco, Jr. Elana and Chadwick Campbell Kevin Kemper Mr. and Mrs. Don T. Rodie Mr. and Mrs. Philip Dion Joseph Clarken III Brent and Jeri Kendle Sue and David Rosen Joseph T. Clees Kim Siebel and Stephanie King Betsy and Eric Roudi SILVER ($5,000+) Dan and Paula Coleman Carol Colombo and Louis Kirby Louie and Lynda Sampedro Marimo Berk and Robert Commisso Jamee and Shaun Klein Eric Schechter Derek Drummond Leslie and Clark Crist Bonnie and Allyn Kluger Frank Schubert Michael Bidwill Liz and Gregg Davis Rob and Jenni Leinbach Linn and Kelly Shaw Meighan Harahan Patty and Steve Dean Suzi Resnik and Stanley Marks Celeste and Eric Silvernail Carrie and Jon Hulburd Renee Dee Kelly Martinez Audra and James Small Jaburg Wilk, P.C. Marjorie and Neil Dreiseszun Ken McElroy Howard and Wendi Sobelman Mr. and Mrs. Scott McIntosh Toni and Steve Dreiseszun Gina and Dan McKinley Melissa and Arturo Solares Rochelle and Pat Riccobene Rebecca and James Felton Kat and Mike McMahon Jennifer and Timothy Sprague Susan and Scott Wallace Derek Figg Scott McPherson DeeDee and Robert Staab Kate and Roger Weitz Gwynne and James Fijan Bianca Mendez-Lovett Nick Staab Barbara and Wallace Weitz Scott and Stacey Fischer Jim Miller Faris Sukkar Anonymous The Gladly Sherri and Charles Mitchell Talent Game Plan, LLC Stephanie and Adam Goodman MST Solutions Effie and Nicholas Theodore BRONZE ($1,000+) Mr. and Mrs. John Graham Dr. and Mrs. Peter and Mr. and Mrs. Mark J. Tucker Shan Ahdoot Julie and Mark Hancock Nicole Nakaji Amy and Brad Vynalek Julie Alpert and Family Kathleen and Tom Harris Elaine and John Napolitan Alan Wawrzyniak Rose and Steven Arck Susan and Ingolf Hermann Katy and Ed Obuchowski Cynthia and Jim Weber Judi Bahr Cecelia and Anthony Herro Kathe and Tim Ogle Leesa and George Weisz Dr. and Mrs. Samuel Bailey Larry and Diane Hillwig Erica and Daniel Openden Desirèe and Greg Wells Neil and Lynn Balter Rachel and Jonathan Hoffer Jeff and Lori Openden Sue and Lawrence Wilk Tyra and Ryan Barradas Marlene and Sanford Horwitz Socrates and Stephanie Christine and Don Wilkinson Deborah and Jeff Beardsley Misty Hyman and Papadopoulos Dawn and Kerry Wilkinson Joseph Berardi David Hovey Jr. Clifford R. Paul Willmeng Construction, Inc. Cori and Greg Bernosky Ken Howard and Kelly Houle Mr. and Mrs. Russ Perlich Charlton Wilson Gayle and Terry Biehn Kathy and Robert Hubbard Lee Ann and Mike Philipsen Heather and Andrew Wright Kristin and David Billings Susan and Brett Huckelbridge Barbara Ralston Anonymous (3) Dorry Boni Susie and Niels Jensen Kirstie and Jim Ransco Rebecca and Ken Boren Ann and Brian Jordan Haley Balzano and We apologize for any omissions Mr. and Mrs. Mark Bosco Kadiant Jeffrey Rausch due to publishing deadline.

2020 | 21 | OUTREACH Discussion on FAQs High & Low Functioning Labels BY CHRISTOPHER J. SMITH, PH.D. SARRC VICE PRESIDENT & RESEARCH DIRECTOR

Background: In 2019, autism researchers from the Telethon Kids Institute and the University of Western Australia called for the term “high-functioning autism” to be abandoned because of the misleading and potentially harmful expectations it creates around the abilities of children on the autism spectrum. What is “functioning,” anyway? The word “functioning” can refer to language, intelligence, social competence or daily living skills. However, ability in one area does not imply the same for teenagers and adults – some are model equal ability in all areas. People with autism who citizens while others are more challenging. This have an average, or even high IQ , may still have range of functioning is clear, yet we never refer to impaired social competence or daily living skills. students, employees, teens or adults as high or low A problem occurs when people hear that a person functioning. It would be wrong to classify people in with autism is considered “high functioning,” they this way. assume that person needs less support. Perhaps even worse, when someone with autism is less What should we say instead? fluent with language, people may assume they are First and foremost, people with autism are people. far less capable than they really are, which limits When describing any individual it’s better to opportunities like friendships, classroom placement describe their attributes, like “my son has autism or employment. and he is highly verbal” or “my daughter has autism and she is learning to live independently.” Those What’s the problem with labeling phrases clearly describe the individual rather than people using “high” or “low” using terms that lump them into poorly defined functioning? groups. So, it’s better to avoid terms like “low- Even if we had a clear, universal definition of functioning” or “high-functioning” altogether. Not “functioning,” it still may not be appropriate to only could using these terms be insulting, but they classify someone as high or low functioning. There do not convey useful information about the person. is a range of functioning for all different kinds of Recognizing the individual with autism is generally people. Some students get better grades than others. better. Some employees perform better. We can even say

OUTREACH | 22 | 2020 Preguntas Frecuentes Discusión sobre las etiquetas Alto-y Bajo- Funcionamiento

POR CHRISTOPHER J. SMITH, PH.D. VICE PRESIDENTE DE INVESTIGACIÓN

menos capaces de lo que realmente son, lo que limita las oportunidades como las amistades, la colocación en el salón de clases o en el empleo. ¿Cuál es el problema con etiquetar a las personas usando el funcionamiento “alto” o “bajo”? Incluso si tuviéramos una definición clara y universal de “funcionamiento”, podría no ser apropiado clasificar a alguien como de alto o bajo funcionamiento. Existe un rango de funcionamiento para todo tipo de personas. Algunos estudiantes obtienen mejores calificaciones que otros. Algunos empleados se desempeñan mejor que los demás. Antecedentes: En el año 2019, investigadores de autismo del Incluso podemos decir lo mismo para adolescentes Instituto Telethon Kids y de la Universidad de Australia y adultos: algunos son ciudadanos modelo mientras Occidental pidieron que se abandonara el término “autismo que otros son más desafiantes. Este rango de de alto funcionamiento” debido a las expectativas engañosas y funcionamiento es claro pero nunca nos referimos a potencialmente dañinas que crea en torno a las capacidades estudiantes, empleados, adolescentes o adultos como de los niños en el espectro autista. de alto o bajo funcionamiento. Sería un error clasificar a las personas de esta manera. ¿Qué es “funcionamiento”? La palabra “funcionamiento” puede referirse al ¿Qué deberíamos decir en su lugar? lenguaje, inteligencia, la competencia social o las En primer lugar, las personas con autismo son habilidades de la vida diaria. Sin embargo, las personas. Al describir a un individuo, puede ser habilidades en una de esas áreas pueden o no mejor referirse a las características individuales, como implicar habilidades iguales en todas esas áreas. Las “mi hijo tiene autismo y es muy verbal” o “mi hija personas con autismo que tienen un coeficiente tiene autismo y está aprendiendo a vivir de manera intelectual promedio, o incluso alto, aún pueden tener independiente”. Esas frases describen claramente al dificultades en la competencia social o habilidades de individuo en lugar de usar términos que los agrupan la vida diaria. El problema es que muchas personas en grupos mal definidos. Por lo tanto, es mejor evitar PHOTO BY ALLISON ANNE JOHNSON PHOTOGRAPHY ALLISON ANNE BY PHOTO cuando escuchan que una persona con autismo es por completo términos como “bajo funcionamiento” considerada “de alto funcionamiento”, asumen que o “alto funcionamiento”. El uso de estos términos esa persona necesita menos apoyo. Quizás aún peor, no solo puede ser insultante, sino que no transmiten cuando alguien con autismo es menos fluido con el información útil sobre la persona. Reconocer al lenguaje, las personas pueden asumir que son mucho individuo con autismo es generalmente mejor.

2020 | 23 | OUTREACH OUTREAC Breakthroughs H | 24 relation to sensory symptoms. symptoms. relation tosensory marker of autism thatmay have value particular in highlight telomere asapossible length biological results These less symptoms. with severe sensory hadshortertelomeres thanparticipants symptoms Specifically,with more severe participants sensory autism. with participants within symptoms sensory anassociationbetween telomeresuggested and length those autism. ofchildren with Additionally, findings developing children but longerof typically than autism hadtelomeres thatwere shorterthanthose siblings ofchildren with found thatunaffected studyalso developing This participants. typically autism with compared inparticipants length to studies thatdemonstrated shortenedtelomere dysfunction. disorders, early-life stress andage-related cognitive multipletelomeres isassociated with neuropsychiatric genetic andenvironmental factors,andshortening of protect DNA. Telomere by both isaffected length are endofachromosome structures oneach that journalthe peer-reviewed Autism Research. Telomeres developing children in family members,andtypically autism, inchildrenlength andadolescentswith their recentlyteam publishedastudyexamining telomere University State Arizona (ASU),SARRC’s research Translational Genomics Research Institute (TGen) and for Autism Genetic Biomarker on Study Examining TGen, ASU Collaborate | Findings from thisstudyreplicated two previous researchers from with theIn collaboration 2020 of atelomere A rendering Students for High School Inclusion Practices Need forImproved Study Highlights Original SARRC disability. ASD without intellectual inadolescentswith skills targeting aneedforimproved social suggest services results also settings. The mainstream educational ASDin forhighstrategies schoolstudentswith theneedforimprovedfindings indicate inclusion levelssimilar ofpeerrejection. Taken together, classmatesand theirgeneral experienced education their classrooms. Interestingly, ASD studentswith classmates and were more likely in tobeisolated accepted by theirpeersthangeneral education ASDweretheir classmates. Studentswith alsoless were corroborated by friendship nominations from perceived more friendships intheirclassrooms than relationships inhigh schoolstudents. peer toexamine studies tousethismethodology schoolstudents,thisisoneofthefirst elementary Although research hasbeenconductedwith similar about relationships theirclassrooms. within social classmatestheir general were education interviewed ASDandmore than500 studentswith of The disability. ASDwithout intellectual students with thepeerrelationshipsexamined of10 high school ResearchMultidisciplinary study andPractice . The Journal journalin thepeer-reviewed School Mental A Health: Findings revealed ASD thatstudentswith In 2019, SARRC’s researchpublishedastudy team

SNAPSHOT OF AUTISM SPECTRUM DISORDER

AVERAGE AGE OF DIAGNOSIS ASD CAN RELIABLY BE DIAGNOSED BETWEEN 12 AND 18 MONTHS

Despite this, most children are not diagnosed with ASD until after age 4. In Arizona, the median age of diagnosis by a community provider is 4 years, 8 months of age.

GENDER GAPS THE GENDER GAP IN AUTISM HAS DECREASED

ASD has historically been more AUTISM common in boys than girls. While current estimates suggest boys are PREVALENCE four times more likely than girls to be diagnosed with the disorder, decreases in the The most recent male-to-female ratio have emerged in recent years. Centers for Disease This is likely a result of improved identification among girls – many of whom do not fit the Control and stereotypical picture of autism seen in boys. Prevention (CDC) report estimated 1 in 54 children* has ASD, representing RISK FACTORS a 10% increase from EXACT CAUSES OF previous estimates. ASD ARE UNKNOWN

Genetic and environmental factors, and their interaction, influence the risk of developing ASD. Occasionally, children with ASD are misdiagnosed with other conditions, like a mood condition or attention deficit hyperactivity disorder, which *Estimates are based on CDC can delay the start of targeted intervention. The data collected from communities significance of specific factors remains largely in Arizona, Arkansas, Colorado, unknown and no single cause has been identified. Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin. Source: Centers for Disease Control and Prevention Shifting Our Perspectives

OUTREACH | 26 | 2020 Shifting Our Perspectives

GIRLS& Autism When it comes to diagnosing girls with autism, experts are finding that we may be looking for the wrong things

BY GINGER SCOTT-EIDEN PHOTOS BY STEPHEN G. DREISESZUN/VIEWPOINT PHOTOGRAPHERS

ichele Thorne dove in head first serve as a typical peer in the Community School’s to understand the nuances of treatment model. autism after her son, Jackson, The Thornes then understood how autism was diagnosed just after his third symptoms can vary for girls and boys. birthday. The signs were obvious While her brother was nonverbal, Maria liked to — regression in speech, repetitive talk — a lot. But it was the substance of her speech behaviorM and extreme difficulty interacting with — echoing words, phrases and sounds of the speech others. of others — that was a sign that she had something When her younger daughter, Maria, displayed more going on. Additionally, while Maria liked none of those symptoms, Michele and her family creative play and appeared to be socializing, a closer assumed she was fine. But when the Thorne family look showed that her play was more repetitive, and sought to enroll Maria in the Southwest Autism her interaction was more about proximity to others Research & Resource Center’s (SARRC) inclusive than actually engaging with them. preschool program, the Community School, as a “When you have a child with autism, you don’t typically developing student, they learned there may know what typical is. Because it’s not what Jackson be concerns regarding their daughter’s development. was doing, we assumed, well, this must be what “I don’t know if I ever would have suspected typical is,” Michele says. Now, both of her children, that she had autism had we not gone through the ages 4 and 7, have been diagnosed with autism. enrollment process for the Community School,” says the Tempe mother of two. “Maria couldn’t even make LOOKING THROUGH A DIFFERENT LENS it through the intake appointment.” The Thornes’ story is not uncommon, and the shift The intake process is a requirement for all in how we look at gender and autism is something potential typically developing students and must be that has been gaining more attention and weaving its completed before enrolling in the Community School. way into practice. Children participate in a play-based assessment, the Studies consistently find higher rates of autism in Autism Diagnostic Observation Schedule (ADOS), boys than girls. Currently, the male-to-female ratio which is designed to elicit communication and social for autism is estimated to be 4 to 1. This gender skills to ensure that they have the skills necessary to gap has led to research aiming to understand the

2020 | 27 | OUTREACH By the Numbers: Girls and Autism

vThe prevalence of ASD has been estimated to be one in 38 boys and one in 152 girls, representing a 4:1 male-to-female ratio (Baio et al., 2018). vSmaller ratios of 3.8:1 and 2.9:1 have been estimated using data from the National Survey of Children’s Health and the National Health Interview Survey, respectively (Kogan et al., 2018; Zablotsky et al., 2017). The Thorne family has a vDespite differences in prevalence for boys and girls, son, 7, and a daughter, 4. the most recent Centers for Disease Control and Both have been diagnosed Prevention (CDC) report found no significant gender with autism. difference in median age of first diagnosis (Baio et al., 2018).

disparity and also to determine whether or not girls are being underdiagnosed. While the results are not yet definitive, the body of research that is starting to emerge is promising for early diagnosis in females, and that is something that is invaluable, says SARRC researcher Stephen James, Ph.D. “Early research on autism planted a seed for a male stereotype of the disorder and led to diagnostic procedures being largely male-biased using male norms,” he says. “In reality, females often present differently. They may have less repetitive behaviors, and their restricted interests may be more socially acceptable and therefore go unnoticed. They may also have a more socially appropriate communication style. With these social camouflaging traits, females are more daughter was on the spectrum. likely to appear as if they are fitting in when they’re Her daughter was often the one she would take young, so it doesn’t raise a flag.” with her to run errands, like trips to the grocery Common stereotypes and gendered expectations store. She says her thinking was that the store would about females in general may help to fuel the be too much for her son to handle and be difficult to possibility of underdiagnosing girls, James adds. make it through. “Females with autism often demonstrate some “I would take Maria, and then it was a disaster appropriate social skills. They may have good eye because she would have a total meltdown. I never contact, develop language and gestures on time, once thought of it as anything other than just her and demonstrate social motivation, which can be hating being at the store,” she says. “I would walk misleading to parents and pediatricians. However, into situations with her and expect an easy experience they may show subtle social differences, like making because she was social, and she was verbal. But in odd or too many social initiations, misreading social reality, girls are just different.” cues, and engaging in repetitive speech,” James says. Those subtleties are something SARRC’s Director of Children’s Services Rachel A. Anderson, M.A., BCBA, GENDER DIFFERENCES FOR THE THORNES has learned to consider when evaluating children. These stereotypes affected how Michele Thorne Through Anderson’s work with the Community and her family saw her two children. Looking back School, she is exposed to children 18 months old to on their experiences now with a new understanding, 6 years of age on a regular basis. She has learned that Michele says it seems readily obvious that her it is relatively common for female children whose

OUTREACH | 28 | 2020 parents are not concerned or whose pediatricians something that is always at the heart for parents of have not yet expressed any concern to demonstrate a child diagnosed with autism. Add to it a barrier symptoms of autism during their intake assessment where evaluations have typically been based on traits for the Community School. It is likely that signs shown in boys, and the climb gets even steeper. were missed because parents and pediatricians were The Thornes are already preparing themselves to viewing autism from the traditional lens. educate people on the differences between their son “Symptoms among girls are often masked by their and daughter and their symptoms as they apply for perceived advanced language and age-appropriate services through Arizona’s Division of Developmental social interest,” Anderson says. “Boys, on the other Disabilities. But the education started a little closer to hand, often engage in more overt behaviors that are home. more easily observed by parents and others who “It took a long time for my family to accept that interact with them. With girls, we run the risk of Maria has autism, because they see Jackson. They missing fractures in social skills and peculiarities in have this prism of what it looks like, and hers does language if we don’t dive in and evaluate the quality not look like ‘classic’ autism,” Michele says. “But our of their language and social interactions.” extended family has learned, and it took them a long while. It took us all a while, learning how boys and THE GENDER HURDLE girls are different, and appreciating this difference.” Anderson says a shift in thinking has really been As the spotlight continues to grow on these taking hold over the last decade, but it needs to gender questions, experts like Anderson and James become more widespread and common. Screening anticipate that a lot of parents and early childhood and diagnostic tools that have been shaped based on caregivers are going to begin to see things that were male behavior should broaden to include signs that once invisible. might not look as obvious but are still there. “In my opinion, I think there is a difference in “The last thing we want to do is take a wait-and- the number of boys with autism compared to girls, see approach,” Anderson says. “The sooner we can but I think that ratio might be closer to two-to-one,” begin to provide early, evidence-based intervention, James says. “We need to bring that ratio of diagnosis the better the long-term outcomes will be.” closer so we can make sure we are getting all kids That uphill battle for services and information is diagnosed as early as possible.” ◗

2020 | 29 | OUTREACH Expediting NODA the continues to expand and help more Diagnostic families with an evaluation for autism

ProcessBY STEPHANIE CONNER

here’s no blood test or MRI or CT scan. for analysis in advance of an on-site evaluation and No single telltale biomarker. No biopsy. significantly shorten the length of time they are in the The process of diagnosing autism spectrum office. T disorder (ASD) is more complex than that, requiring observation, interviews and testing to round NODA AT WORK out an assessment. These procedures can take a great At her daughter Ella’s 24-month well visit in deal of time for families once in the diagnostic center. September, Stephanie Berube’s pediatrician expressed And too much time in the doctor’s office with small concern about development. Ella had already been children is never much fun … for anyone. seeing a speech therapist after concerns at her But at the Southwest Autism Research & Resource 18-month appointment. Center (SARRC), families can save time and perhaps “She suggested we go to SARRC,” Berube says. eliminate some discomfort for their kids, thanks to “We contacted them and started the paperwork. NODA™. Then, they had us use NODA. They said it would NODA — the Naturalistic Observation Diagnostic be a better experience for Ella, because kids are often Assessment (NODA) — is a smartphone-based system better at home than in a new environment with new that lets parents record and send videos to SARRC people.”

OUTREACH | 30 | 2020 NODA, which SARRC developed with the “The diagnosis helped me get her into a preschool Georgia Institute of Technology and Behavior Imaging program.” Solutions, was designed to help families who lived far away get a diagnosis without extensive travel. But THE FUTURE OF NODA after nearly four years in use, NODA’s success and One recent development that benefits NODA benefits have been applied to more families; it’s now a and SARRC’s families, Dr. Smith points out, is that standard part of the diagnostic process at SARRC for AHCCCS (Medicaid) updated its guidelines to include children 6 years of age and younger. “store and forward” telehealth technology. Previously, “We’re using NODA to shorten the in-person only real-time video was acceptable, which would be assessment time — not replace it,” says Christopher a lot less convenient for parents and providers alike J. Smith, Ph.D., vice president and research director because it requires both parties to be available at the at SARRC. NODA can diagnose ASD (or rule it out) same time. Scheduling that kind of meeting can slow for most children, but an in-person assessment is still things down significantly. With store and forward (the required. That’s because in order to demonstrate a technology NODA relies on), families can record videos child needs services, quantifiable evidence of a delay on their own schedule, and SARRC staff can review in socialization or communication must be included. videos whenever they have time. “NODA only documents the presence of “That was a symptoms, but doesn’t provide quantifiable huge milestone measurements of delays,” Dr. Smith says. “You need to meet toward another kind of assessment to do that, so we need to wider acceptance % meet with the family in our office.” of NODA,” Dr. Using NODA in advance of the appointment Smith says. “Now 50 shortens a family’s time at SARRC from about five more providers hours to two. can begin to use FASTER “So, the in-person appointment is much shorter, NODA. Hopefully, and psychologists have access to very rich information commercial insurers Research on the child, seeing things they may not have seen will follow suit.” during the office appointment, before the family even Beyond clinical studies show comes in,” he adds. application, the app that families Diagnostic is used in research HOW NODA WORKS around the globe. received a Parents download the app and set up a secure SARRC just finished account. Then, the NODA app prompts them to a project with diagnosis 50% record and upload short videos of their child in monolingual Spanish- various situations at home — mealtime, bedtime, speaking families, so faster with ProcessBY STEPHANIE CONNER playtime with others, and playtime alone. the app was translated NODA than Clinicians at SARRC then view the videos, tag into Spanish. It has behaviors relevant to a diagnosis of autism and NODA also been translated those who did organizes these tags according to DSM-5, prepared for into Japanese and review by a psychologist. Swedish, and it is a traditional Berube recalls starting the process after her now being used in daughter’s appointment in September, completing an epidemiological in-person paperwork, submitting videos and going into SARRC study in Saudi assessment. about two weeks later. They had Ella’s diagnosis of Arabia, establishing ASD by November. The time from the pediatrician their national rates of screening to diagnosis can take 6 months or more. autism. That’s a long time to wait for answers when you are Undoubtedly, there’s a tremendous amount of concerned about your child’s development and would exciting work ahead, but for Dr. Smith, the real like access to early intervention therapies. excitement is for parents like Stephanie Berube. For Berube, that diagnosis is important because it “Families report positive experiences with NODA,” means Ella can have access to covered services. he says. “They’re saying it’s easy to use and it really “We’re meeting with the school district and captures important behavior. As a result, they get going through that stage right now,” Berube says. answers sooner, and that’s a good thing.” ◗

2020 | 31 | OUTREACH Future of Cyber Safety & Autism SARRC is developing a new online safety curriculum that will provide effective teaching strategies for people on the autism spectrum, as well as their families

BY KAREN SCOTT

OUTREACH | 32 | 2020 he omnipresent accessibility of the SARRC is internet is easier now, more than ever, developing to find what you need with the click of a new online safety a button. And while the availability of T curriculum for information and resources is extremely valuable, teens and adults the Southwest Autism Research & Resource with autism that Center (SARRC) recognizes there are significant will help them safety risks for people with autism spectrum navigate the disorder (ASD) as they navigate a sprawling web. online community. “We have learned more and more of the risks PHOTO COURTESY OF associated with online activity and individuals FIRST PLACE® AZ with ASD, who may be especially vulnerable to those risks,” says Paige Raetz, Ph.D., BCBA-D, director of Teen and Adult Services at SARRC. “Within our own work, we’ve seen firsthand interpret,” Dr. Raetz adds. situations where sensitive information is being Phase two, being led by Dr. Raetz and a small shared and the potential for our clients to put team of SARRC clinicians in 2020, is focusing themselves in unsafe situations.” on the development of the curriculum as well as With these concerns in mind, Dr. Raetz a parent-training manual that will be delivered and her team explored funding opportunities to families by clinicians. Starting in 2021, the to support the launch of a new online safety final curriculum will be expanded to SARRC curriculum at SARRC. Subsequently, the team programs and services specific to those that serve secured a two-year grant from NEXT for teens and adults with autism. AUTISM that would allow them to implement Education, employment and even social a comprehensive online safety program to be opportunities all utilize and, in many cases, embedded within SARRC’s programming. In 2019 require an online presence, so it’s imperative that — year one of the grant — a discovery phase was those with autism better understand what types completed where SARRC clinicians participated of activities to avoid and how to be safe when in trainings and presentations delivered by navigating the online world. prominent experts. “My hope is that this curriculum will support “The discovery phase was extremely individuals and their families in safely navigating important in understanding the most prevalent within an online community,” says Dr. Raetz. themes and trends leading to threatening or “The online world is not something that can compromising situations within an online be avoided and advances in technology require space for people with autism, specifically,” individuals to access the web more frequently says Dr. Raetz. “As we learned more about the than ever before.” ◗ data surrounding these implications, we knew remaining vigilant by introducing an online safety curriculum was more critical than ever.” A Closer Look Examples of potentially compromising While there is little data to date, research studies have situations include, but are not limited to, indicated that 30% of the prison population consists of sharing financial information; depositing money individuals with developmental and/or cognitive disabilities on someone’s behalf; transferring money from (Bronson, Maruschak, & Berzofsky, 2015). account-to-account; searching topics that would lead to a dark web space; or misunderstanding Many experts believe that ASD is underrepresented within a friendship or relationship, leading to unsafe that group, suggesting there is a larger group of individuals situations. with ASD in the prison system. Additionally, many anecdotal “One of the core features of ASD is difficulty cases have indicated that online activities have led to first within social situations. When you add in the contact with the legal system by local and sometimes federal social nuances in an online environment, these law enforcement for crimes like money laundering, fraud and social challenges can be magnified, essentially child endangerment. making social interactions even more difficult to

2020 | 33 | OUTREACH THE ARIZONA DIAMONDBACKS ARE PROUD TO SUPPORT SOUTHWEST AUTISM RESEARCH & RESOURCE CENTER!

Live healthy. Live happy. Mercy Care stands with the Southwest Autism Research & Resource Center (SARRC) in supporting individuals and families throughout their journey.

Because we care.

www.MercyCareAZ.org

OUTREACH | 34 | 2020 Course Correction BY MICHELLE GLICKSMAN SARRC’s JumpStart helps change the course of a mother and son’s journey

hen Allyson Perreault’s son received a diagnosis of autism spectrum disorder (ASD) at age 4, she remembers being W completely overwhelmed. “I didn’t know where to begin,” recalls Perreault of her son, Myles. “He had been in a developmental preschool and was testing behind on everything.” The developmental pediatrician who diagnosed him gave Allyson and her husband, Michael, a packet of information and resources. One of the resources included Southwest Autism Research & Resource Center (SARRC) and its JumpStart® program, a parent empowerment program for families/caregivers with a recently diagnosed child. The Perreaults were living near SARRC at the time and so they attended JumpStart in person shortly after Myles was diagnosed. Allyson, Myles and Michael Perreault. “Going through JumpStart empowers parents to learn how to work with your child,” Allyson After 18 months of ABA therapy, Myles was explains. “I think it would have been really difficult no longer showing signs of autism and is making to navigate everything without going through a amazing strides, Perreault says. Currently in second program like that. Getting off on the right foot grade, he is now mainstreamed, has close friendships, in understanding evidence-based practices was loves math, and is reading at a fifth-grade level. extremely beneficial, and it was really helpful to get And for the Perreaults, JumpStart impacted more SARRC’s perspective on what evidence-based was. than just Myles. Allyson had been working in IT for Plus, being there with other parents, being led by a 15 years, but seeing the impact ABA had on her son, BCBA (Board Certified Behavior Analyst) during a she decided to change careers. time when there was so much fear and anxiety for “ABA was so impactful to our lives that I decided us was pretty incredible.” to quit my IT career and pursue my master’s The Perreaults pursued ABA therapy for Myles, in ABA,” she shares. “I am currently in my last although they soon needed to relocate to Boise, semester at Ball State University. Seeing how I could Idaho. They quickly found that the available services help others and be impactful was a big motivating — including ABA providers — were more difficult to factor for me.” find in Idaho than Arizona. For the Perreault family, the program was a life- “I think it took 12 months into living there to find changing experience for their entire family. an ABA provider, so the JumpStart materials were “JumpStart helped us start our ASD journey on really beneficial for me to do parent training with my the right foot, and for that my family and I are truly son during that time,” Perreault says. grateful.” ◗

2020 | 35 | OUTREACH victories of all kinds

Blue Cross Blue Shield of Arizona is proud to support Southwest Autism Research & Resource Center in its mission to advance research and provide a lifetime of support for individuals with autism and their families. 385716-17

OUTREACH | 36 | 2020 Voices Sibling

BY NIAMH SUPPORT CAMPBELL Sisters Niamh and Zara Campbell help bring ‘Sibshops’ to SARRC

y sister, Zara, and I are proud to have advocated for Sibshops to launch at SARRC in 2020. I am currently a freshman in high school, and Zara is Min sixth grade. Our younger brother, Euan, is 9 years old and was diagnosed with autism four years ago. As siblings to a brother with autism, Zara and I are constantly finding our place and adjusting to everything that happens to Euan. In February 2018, Zara and I attended a Sibshops workshop, and we really enjoyed the experience. During the session, there were a lot of games and activities, but also some time for meaningful conversations about life as a sibling of someone with autism or other challenges. That experience changed us; we realized we weren’t alone — there were other kids out there who were going through similar experiences, and who, like us, wanted to feel “connected.” Last year, I completed a 10-minute original speech on a topic of my choice for my school’s speech and debate team. While brainstorming topics, our experience at Sibshops came up. Not only did this become the focus of my speech, it led Zara and me to recall what Sibshops had meant to us, and Focus on Sibshops it got us thinking about creating our own sibling support The Sibshops model, developed by the Sibling group. Given what SARRC has done for Euan and our Support Project, provides an avenue for siblings to form family, we asked SARRC to help make our idea a reality. a community and share experiences that could lead to From Euan’s time in SARRC’s Comprehensive Behavior a positive impact. Sibshops are casual events where Program, we know that SARRC seeks to help not only the participants meet other sibs, have fun, laugh, talk about person with autism, but also the entire family. For a lot of having a sibling with special needs, play games, and learn siblings, we spend so much time and energy supporting our about the services their brothers and sisters receive. siblings with autism that we forget to, or choose not to, share Sibshops is offered to participants ages 7 to 13. how we are feeling or ask for support when we need it. Having a space, such as SARRC’s Sibshops, will allow Sessions take place at SARRC’s Sybil B. Harrington siblings to come together, connect and support one another. Campus for Exceptional Children, 300 N. 18th Street Zara and I benefited so much from the program, and we in Phoenix. Learn more or view upcoming sessions at want to share that with others. While there are certainly autismcenter.org/sibshops. challenges that come with being a sibling of someone with autism, there are so many benefits. Sibshops helped us Above: Sisters Niamh and Zara helped to bring Sibshops to discover those benefits, provided a safe environment to SARRC in 2020. They are pictured with their brother, Euan, talk about the challenges, and made us feel like we were who has autism. supported. ◗

2020 | 37 | OUTREACH Developing with a Difference.

We make a living by what we get. We make a life by what we give. -Winston Churchill

DEVELOPMENT + ACQUISITION VANTRUSTRE.COM

36 adult students enrolled in the First Place® 35 120,000 Transition 70 infants and treatment Academy 123 Employment 137 mothers hours were operated parents Partners recreational supported provided by SARRC and committed program staff through through to learn caregivers to employing supported by SARRC’s SARRC’s how attended individuals Education, Milestones clinical to live Family with Training and program programs independently Orientation autism Consultation

SARRC COMMUNITY IMPACT

Developing with a Difference.

We make a living by what we get. We make a 158 100% 14 6,650 1,014 46 children with of SARRC’s teens with parents, family research and young life by what we give. and without adult clients ASD and members, individualized children and autism seeking 30 typical peers services were 63 attended employment teen and community provided to family members -Winston Churchill SARRC’s secured Peer Mentors members children, teens participated in Community meaningful, received were reached and adults JumpStart® School competitive pre-employment through with ASD jobs in the training in education and community CommunityWorks® outreach efforts DEVELOPMENT + ACQUISITION VANTRUSTRE.COM 2020 | 39 | OUTREACH

Get Connected

Programs & Services

SARRC’s clinical model is grounded in applied behavior analysis (ABA) with a particular focus on naturalistic behavioral interventions in inclusive environments, including but not limited to: in the home, in school, on the job or in the community. Each of SARRC’s therapeutic programs, classes and trainings are guided by best practice models; the most currently available science; increasing independence and producing meaningful outcomes; and the individualized needs of the children, teens, adults and families we serve.

Unless otherwise noted, for more information on a listed program, service or research study, please contact SARRC’s Intake Team at 602.606.9806 or visit autismcenter.org. Para hablar con alguien en Español llame al 480.603.3283.

DIAGNOSTIC SERVICES* Licensed psychologists will conduct assessments to determine if an individual meets DSM-5 diagnostic criteria for autism spectrum disorder (ASD). This program is available to individuals of all ages and includes parent/guardian/caregiver assessments to gather information about an individual’s developmental history. For children 6 and younger, the Naturalistic Observation Diagnostic Assessment (NODA™) is an accurate and effective alternative to the in-person assessment that uses smartphone technology and a team of clinicians at SARRC to diagnose – or rule out – autism. *Tambien en espanol.

FAMILY ORIENTATION Family Orientation connects caregivers of individuals with ASD to current and broad information that will help them navigate the journey of autism. Participants will learn about issues that are relevant to their child’s stage of life. Orientations are for families with newly diagnosed children, those who have recently relocated to Arizona, and families making life transitions. Family Orientations are held once a month for caregivers of individuals in each age group: Young Child (younger than age 6), School-Age Child (age 6-12), Teens and Adults (age 13+). Orientations are free and delivered online.

MILESTONES PROGRAM The Milestones program offers services and supports for parents of infants starting as young as 6 months and continuing through 18 months of age. This program is ideal for families with infants who have an older sibling with a diagnosis of autism, as well as new parents looking for more information and support

GETTING STARTED regarding their infant’s development. Services can include 1) evidence-based information on developmental milestones and parenting practices, 2) consistent monitoring and 3) a very early intervention option for babies demonstrating early signs of ASD or with a diagnosis of ASD prior to 18 months.

JUMPSTART®* Designed for families of young children who have been recently diagnosed or are at risk for ASD, JumpStart® is a six-week program that provides critical information, support and training so parents and caregivers feel confident and supported as they begin to make decisions for their child. Parents will learn strategies to immediately address their child’s communication and understand the ASD diagnosis. JumpStart is available to families living in Arizona and out-of-state. *Tambien en espanol.

2020 | 41 | OUTREACH OUTREAC Get Connected H | 42 | 2020 FOCUSED, SHORT-TERM COMPREHENSIVE, LONG-TERM INTERVENTION INTERVENTION community. CommunityWorks FIRST PLACE socially significantbehaviorsandhighlightingeachchild’s individualstrengths. from Goalsare aBCBA. developedand supervision incoordination withthefamilyandfocusonincreasing receive sessions,regular weekly 1:1intervention caregiver training sessions,andprogram management implemented inthehomeandcommunityisoftencoordinated withastudent’s school.Families environments andtheirfamilies. tomeettheneedsofchildren upto age14withASD Treatment isprimarily SARRC’s Comprehensive Behavioral Program provides intensive, ABA-basedprogramming across COMPREHENSIVE BEHAVIORAL PROGRAM After-school care isavailable fortypicallydeveloping children. home andinthecommunity, BehaviorAnalyst(BCBA). and program from aBoard supervision Certified alsoreceivewith ASD intheclassroom, 1:1intervention parent-training sessionsconductedinthefamily’s environment structured tospecifically improve meaningful engagementandsocialcommunication.Children appropriate curriculumthatisalignedwithstateeducationstandards; andalanguage-enriched trained classroom SARRC therapists withina4:1student-to-teacherratio; aplay-based,developmentally campuses inPhoenixand Tempe. Allchildren (ages18monthsto5years) receive thebenefitsofhighly andhigh-qualityearlychildhoodeducationfortypicallydevelopingfor children children withASD with SARRC’s CommunitySchoolisapreschool program thatprovides intensive, ABA-basedprogramming SCHOOL COMMUNITY WORKSCOMMUNITY Monthly parent training thetransition isalsoavailable intoadolescenceoradulthood. tosupport andimplemented by highlytrained BehaviorAnalyst(BCBA) by clinicians. aBoardare Certified supervised Sessions are highlyindividualized inorder toincorporate thegoalsofeachclientandtheirfamily. Services Inatypicalweek, individuals mayreceive services. one intervention between 5-20hoursofintervention. home andcommunitytotarget theuniqueneedsofeachteenandadult.Clientsreceive weekly one-on- andtheirfamilies. to meettheneedsofourclientswithASD Treatment isprimarilyimplementedinthe forteensandadultsprovideIndividualized Services intensive, across ABAintervention environments INDIVIDUALIZED SERVICES the skillstheylearninclassroom tothenatural environment. GateWay CommunityCollegecampus.Instructionisalsoprovided withinthe students’ applying apartments of classesonfinances,interpersonal relationships, advocacy andpersonalsafety, allcompletedatthe leisure skills,andtransition services. The Transition Academyincludesa32-coursesequence,consisting a comprehensive independentlivingskills,socialand curriculum,includingcareer educationandsupport, Students withinthecommunitywhileattendingclassesandworking.Students live receive inapartments comprehensive andintensive transition ABA-basedprogramming foryoung adultswithASD. tosupport In partnership withFirstPlaceAZ In partnership evaluations, withinSARRC’s internshipsandvolunteer opportunities BeneficialBeans preparation; andon-the-jobtraining mayalsoincludevocational andcoaching.Employment Services of pre-vocational andaccommodations; resume andvocational and job interview goals,supports training. Clientsreceive a functionalassessmenttoidentifyemployment skillsandinterests; development while teachingappropriate workbehaviors,buildingsocial skills,andproviding specialized vocational isaimedatincreasingEmployment competitive foradults withautism, Services employment opportunities EMPLOYMENT SERVICES community. alsoreceiveASD parent training sessionsconductedinthefamily’s and1:1intervention homeandinthe throughout theircommunitieswhiledeveloping jobskillsandsocialcommunicationskills. Teens with CommunityWorks toengageinvolunteer, provides work forteenswithandwithoutASD theopportunity teens ages13-18forthetransition toindependentliving,highereducationand/oremployment. Autism ® TRANSITION ACADEMY TRANSITION ® isapre-employment andcommunityinvolvement program thathelpsprepare ®

® , SARRC’s Transition Academyisatwo-year program thatprovides ® Garden orinthe Garden PARENT TRAINING Parent Training equips parents with strategies to help foster language, social and play skills that will benefit their child and family. Through coaching and hands-on practice, coaches will come alongside

parents as they learn strategies to incorporate into everyday interactions. Two clinic-based options are offered; a 1-week and 12-week model. Together, parents and coaches will collaborate to identify individualized and meaningful goals for the family and their child.

PEERS® PROGRAM The PEERS® curriculum is a manualized 14-week intervention that was developed to teach social and friendship skills to cognitively able adolescents with ASD, along with typically developing peers. During weekly 90-minute sessions, small groups of adolescents are taught social skills, including the importance of verbal and nonverbal communication. Parents learn the same material and are trained to coach their adolescents as they complete weekly assignments related to the course material.

PHYSICIAN OUTREACH PROGRAM SARRC’s Autism Spectrum Disorders Screening Kit enables physicians to effectively screen for ASD during developmental checkups. The kit includes parent questionnaires, presented in English and Spanish, INTERVENTION scoring templates and materials to assist with timely referrals and earlier diagnoses. Training meetings are held monthly for all medical personnel who are interested in learning more about autism. FOCUSED, SHORT-TERM SHORT-TERM FOCUSED, SECOND GEAR Second Gear is an 8-week parent training program that provides information, consultation and coaching to parents of children with a diagnosis of ASD between 4 and 10 years of age. Second Gear is currently offered as a telehealth model in which parents connect with a BCBA coach from the comfort and familiarity of their own home.

2020 | 43 | OUTREACH OUTREACH Get Connected | 44 | 2020 COMMUNITY: SERVICES AND PARTNERSHIPS RESEARCH ThinkAspergers THINK implement bestpractices toimprove successofallparticipants. that are moving toward aninclusive modelorwould liketoimprove uponanexistingmodellookingto areInclusion training offered and consultationservices toschool-basedandrecreational organizations AND CONSULTATIONINCLUSION TRAINING and school. and reviewed withtheschoolandwilllikelyincludeavariety ofactivitiestomeetthegoalsstudent needs ofthestudent,teacher, classroom andschool.Initialobservation andassessmentare completed Student-based consultationsincludeinitialassessmenttoguidedevelopment ofaproposal tomeetthe CONSULTATIONS STUDENT-BASED Children.for Exceptional Most events offercontinuingeducationunitsforBCBAs. Professional are development offered throughout opportunities theyear atourSybil B.HarringtonCampus DEVELOPMENT PROFESSIONAL can becustomized and offered inyour settingorcheckoutourcalendar toseescheduledevents. consultants usestories,videoexamplesandinteractive activitiestoengagetheaudience.Presentations Educational presentations are delivered toprovide informationandmessageswithapunch!Our PRESENTATIONSEDUCATIONAL FAQ sessionswithourexperts. practices, providing resources programs orschedulingtoursand andmaterialsaboutSARRC andservices, organization orcommunityprogram, includingbriefpresentations aboutautismand evidence-based includeavariety tomeettheneedsofprofessional, Outreach ofinformationalservices efforts OUTREACH Info atautismcenter.org/research. View ourlatestresearch studiestoseeifyou are eligibletoparticipate! inastudy,in learningmore aboutparticipating pleasecontactamemberofourteamat602.340.8717. pharmaceutical research studies. approaches forpeoplewithautismofallages. iscommittedtoidentifyingeffectiveSARRC behavioral, educationalandpharmaceuticaltreatment STUDIES &RESEARCH TRIALS PHARMACEUTICAL coaching foreligibleemployees. the workplaceandreceive from with autismawareness SARRC training forstaff and individualjob support committodiversitythe employment Employment andinclusionin rate partners amongadultswithASD. employment, butthrough thehelpofourvalued iscommitted toincreasing SARRC employment partners, Nationally, foradultswithASD. based employment opportunities experience low rates adultswithASD of withlocaland nationalemployers creates toincreaseSARRC partnerships competitive, community- PARTNERSHIPS EMPLOYMENT searching viatheAppStore “ThinkAspergers” orGooglePlay. individuals withautismandtheirfamilies.Our ThinkAspergers mobileappcanbedownloaded forfree by refer children withthecommunitytopromote forformalevaluation, inclusive andpartners practices for age children offerseducationalpresentations, orolderindividuals.SARRC ascreening questionnaire to stakeholders toconsiderautismspectrumdisorder whentheyseesubtlesocialchallengesinschool- ASPERGER’S ® isdesignedtoeducateparents, educators,pediatriciansandothercommunity ®

Seeourwebsite forthemostcurrent listofprojects.

Our research department maintains a robust portfolio of maintainsarobust Ourresearch portfolio department

Ifyou are interested

SNAPSHOTStatement of Financial Position as of December 31, 2019 (unaudited)*

ASSETS

Financials Current Assets $7,139,562 SUPPORT & REVENUE Long Term Assets $8,316,853 TOTAL ASSETS $15,456,414 In-Kind Support

LIABILITIES Current Liabilities $1,290,961 Interest, Long Term Liabilities $21,261 Dividend & TOTAL LIABILITIES $1,312,222 Investment Individuals & Corporations NET ASSETS Unrestricted Net Assets $10,419,497 Grants Governmental Temporarily Restricted Net Assets $1,094,695 Permanently Restricted Net Assets $2,630,000 TOTAL NET ASSETS $14,144,192

TOTAL LIABILITIES AND Special Events NET ASSETS $15,456,414 Programs Statement of Activities for the Period Ending & Research December 31, 2019 (unaudited)* SUPPORT & REVENUE Individuals & Corporations $1.845,627 13.4% Grants $818,094 6.0% Governmental $234,682 1.7% Special Events $1,313,751 9.6% Programs & Research $8,363,968 60.9% Interest, Dividend & Investment $1,108,711 8.1% In-Kind Support $45,038 0.3% Total Support & Revenue $13,729,872 100.0% EXPENSES BY DEPARTMENT EXPENSES Salaries, Benefits & Professional Development $10,575,448 78.2%

Contract Labor & Development/ Professional Services $372,639 2.8% Fundraising Program Expenses $1,227,917 9.1%

Postage, Printing & Marketing $221,187 1.6% Administration Occupancy & Communication $466,191 3.4% Special Events Costs $183,630 1.4% In-Kind Expenses $45,038 0.3% Amortization & Depreciation $424,234 3.2% Research Total Expenses $13,516,283 100.0%

Programs & Services for TOTAL CHANGE IN NET ASSETS $213,589 Children, Teens and Adults EXPENSES BY DEPARTMENT Programs & Services for Children, Teens and Adults $9,347,080 69.2% Research $1,745,728 12.8% Administration $1,063,517 7.9% Development/ Fundraising $1.359,958 10.1% Total Expenses by Department $13,516,282 100.0%

*A copy of the fully audited financial statements will be available after June 30, 2020, by contacting Andrea Levy, Chief Financial Officer, (602) 340-8717.

OUTREACH | 46 | 2020 Thank you to Kathy Bosco, founder of the Grandparents Support Group, who is a devoted grandmother of a grandson with GRANDPARENTS autism. SUPPORT GROUP The mission of SARRC’S Grandparents Group is to empower grandparents through hope, education and support.

OUR MEETINGS Grandparents Group meetings are held monthly from October through May, with the goal of empowering, enriching and supporting all members. In addition to offering a network of support, grandparents attending the group’s monthly meetings participate in facilitated discussions, learn the latest information about autism from guest speakers, receive advice and training, and socialize with each other.

OUR GOALS SARRC’s Grandparents Group wishes to empower, enrich and support our group members.

EMPOWER ENRICH SUPPORT Through facilitated discussions, Guest speakers and professional The Grandparents Group is here for individuals gain insight, presentations provide key information you! By attending meetings, you will develop strength and find on the latest research, therapeutic collect vital information, tips and hope through shared programs and resources available strategies that will help your entire experiences. in the field of autism. family on your autism journey.

LEARN MORE autismcenter.org/grandparentsgroup | 602.340.8717 Nonprofit US Postage PAID SOUTHWEST AUTISM RESEARCH Phoenix, AZ & RESOURCE CENTER (SARRC) Permit #5079 300 N. 18th St. Phoenix, AZ 85006 602.340.8717 [email protected] autismcenter.org