Denise is the founder and president/CEO of First Place® AZ (established in 2012), co-founder of the Southwest Autism Research & Resource Center (SARRC, established in 1997), and founder and CEO of DRA Collective, a marketing/communications firm (established in 1986) that serves clients in a variety of fields, including real estate, economic development, healthcare, education and hospitality. Her adult son Matt, who has autism, and others with different abilities inspire her work.
A native Phoenician and international leader in autism, Denise has raised community awareness and more than $75 million for autism, primarily from Arizona sources. The supportive community—facilitated by SARRC, First Place and dozens of partnering organizations—inspired PBS NewsHour to produce a two-part, nationally broadcast series citing Phoenix as “the most autism-friendly city in the world.”
Backed by 25 years of research, support from the Urban Land Institute and more than 100 collaborators from the public, private, philanthropic and nonprofit sectors, First Place AZ is positioned for transformational impact on how society approaches housing and community development for individuals with autism and other neurodiversities.
Denise’s leadership has also driven the development of two major studies:
· A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities, offering the universal language for a guiding narrative to research, develop and achieve supportive housing solutions. The groundbreaking 2020 report includes more than 150 terms to help guide people to better understand housing preferences, accessibility needs, supportive amenities, service delivery models and more. It aims to clearly define nomenclature and market segments for the benefit and application of all sectors; establish best practices and guiding principles; and drive crucial partnerships and policy decisions that address pressing needs compounded by the current housing crisis.
· Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders, the first-ever study to focus on the housing challenges of adults with autism and other neurodiversities. This 2009 report also cites specific design goals and guidelines and remains the go-to source for architects, planners and developers. Opening Doors resulted in the founding of First Place AZ and the Autism Housing Network, an online platform bringing together the best ideas and resources in housing for adults with autism and other neurodiversities.
First Place–Phoenix, the nonprofit’s first property, opened mid-2018 with the bold vision of ensuring housing and community options for adults with autism and other neurodiversities are as bountiful as they are for everyone else. The 81,000-square-foot, $15.4 million property, set within the heart of the Greater Phoenix community, represents a new residential prototype demonstrating greater opportunities for employment, lifelong education, healthcare and recreational options that create more choices for more independent living.
Denise serves as board vice chair of Home Matters® to Arizona and a member of Arizona State University’s Watts College Dean’s Council, the Creighton University Presidential Health Sciences Phoenix Advisory Board, The Precisionists, Inc. Advisory Board and the Autism Society Marketing Task Force. Former leadership positions include the Autism Speaks Housing Committee, Advancing Futures for Adults with Autism Leadership Council, National Association of Residential Providers for Adults with Autism and the National Autism Transition Research Network Advisory Panel. Denise has also served as a federally appointed member of the Interagency Autism Coordinating Committee of the National Institutes of Health.
Where did the idea for First Place AZ come from?
When our son Matt was born in 1991, we promptly counted his 10 fingers and toes then marveled at his 9.6 Apgar score. Daughter Ally, born just 17 months earlier, was thriving. Our prayers had been answered!
But something changed after Matt’s first birthday. He stopped looking at us and responding to his name. The pediatrician said not to worry. The audiologist reported perfect hearing. Before seeing more specialists, my mother gave me a book titled, “Let Me Hear Your Voice.” I only had to read the first few chapters to know what I so wanted to deny: Our son had autism.
After Matt’s official diagnosis in 1993, our dreams for him and our family vanished. We were told institutionalization would be best. Such was the prevailing counsel for this confounding disorder impacting one in 2,500 U.S. children at the time.
Back then, we didn’t know where to go or what to do. We barely knew what autism was. The landscape of options was barren at best and the internet just emerging. I connected with a small support group of mothers who met at a coffee shop near the local mall. We were all focused on the pressing questions of the day. One table of moms became two, then four—until we filled an entire restaurant with moms and dads.
The big questions always loomed: How did this happen? Will he recover? Am I to blame? How can we be the parents Matt needs and deserves when there’s so much we don’t know and so much we fear?
We started to find answers in our Phoenix community of friends, families, physicians and professionals. With their help, the Southwest Autism Research & Resource Center (SARRC) was founded in 1997. Without money, staff or dedicated office space, we still had big dreams and a bold vision: to advance discoveries and support individuals impacted by autism and their families throughout their lifetimes.
Thanks to the support of my marketing and public relations agency, DRA Collective which specializes in community and real estate development, I was surrounded by friends, colleagues and experts in the field. I recall those early days of convening groups in client offices doing my best to express my vision and the urgency.
We believed that if SARRC focused on what was right for our families and the community at large, we could create a model for communities everywhere. Today, SARRC serves as an international model and represents one of the most robust sites in North America for the recruitment and enrollment of subjects in pharmaceutical trials. Together, we have built a city that offers early identification, intervention and education; lifelong learning; training and employment; a responsive, supportive community; and now more home options—all reasons why PBS NewsHour dubbed Phoenix “the most autism-friendly city in the world.”
Because of SARRC and our supportive community, the stage was set in 2012 for the founding of First Place AZ, SARRC’s sister nonprofit, as a residential and community developer responding to that looming question: Who will care for my child when I’m no longer able?
Today, autism is diagnosed in one in 54 U.S. children. Approximately 60,000 of them are also transitioning to adulthood annually, faced with a bleak landscape of confusing, fragmented or nonexistent services where unemployment or underemployment hovers at around 86%.
Backed by 20-plus years of research and its first property, First Place–Phoenix, First Place AZ is positioned for transformational impact on how society approaches housing and community development for individuals with autism and other neurodiversities.
What does your typical day look like and how do you make it productive?
There is no typical day at First Place! I wear many hats—as founder and CEO, passionate mother on a mission, lifelong learner focused on outcomes, community developer and advocate for our son and others like him working hard to develop their independent life skills and opportunities to have friends, an education, jobs and access to quality healthcare. I work closely with the COO and CFO to fortify operations and constantly monitor how—beyond the real estate—this unique property lives and breathes and serves as home to residents.
How do you bring ideas to life?
I surround myself with really smart people who align with my values and complement my skills and talents. We share a collective vision and work hard every day in our respective realms to make it a reality.
What’s one trend that excites you?
The collaborative passion of fellow pioneering parents and others searching for more innovative housing solutions and choices is definitely a growing trend. But another trend distresses me: With one in 54 U.S. children diagnosed each year and more than a million people with autism and other intellectual disabilities living with caregivers over 60, we need to direct and focus that passion for innovation to mitigate displacement and even homelessness.
What is one habit of yours that makes you more productive as an entrepreneur?
I’m a dreamer. I dream with and without a pillow. I also enjoy hikes to clear my head, use dictation to capture my thoughts and make the most of my commute with hands-free phone calls. And I’m a VERY early riser!
What advice would you give your younger self?
Worry less about the what-ifs and channel your energies into positive spaces that can be more fortifying and gratifying. At the same time, be aware of risks and apply your planning skills accordingly. Also, I would encourage my younger self to get more sleep—and skip sunbathing altogether!
Tell us something that’s true that almost nobody agrees with you on.
This is a hard question for me to answer as I have keen peripheral vision and inform my truths based on information and experiences I share with others.
As an entrepreneur, what is the one thing you do over and over and recommend everyone else do?
Learn how to dream with and without that pillow! Then you learn to wake up each day more energized by your vision and with a sense purpose.
What is one strategy that has helped you grow your business?
As the founder and CEO of the marketing and public relations firm DRA Collective (1986), co-founder of the nonprofit Southwest Autism Research & Resource Center (1997) and founder and president/CEO of the nonprofit First Place AZ (2012), growing my business involves one major strategy: Inspire others to want to be part of something bigger than themselves, empowering them to learn, grow and express their values, talents and passions.
What is one failure you had as an entrepreneur, and how did you overcome it?
First Place stalled for many years because I was so committed to developing a new housing model for everyone with autism and other neurodiversities: those with high- and low-support needs, people with and without financial resources, and all the moms and dads who, like me, worried about their sons’ and daughters’ future.
It’s not possible. There’s no one-size-fits-all approach to housing or community development. That’s the beauty of our diversity, varied interests and opportunities to learn from others. Also important was stepping away from the restrictions and confines of public policy. We recognized that years after significant investments in early diagnosis, intervention and education, life course outcomes for adults continued to be disappointing. We did not want to do the same thing over and over again knowing the result, so we redirected our efforts. At times, stepping away from the public sector allows us to be more innovative and gives us the chance to demonstrate what works, what needs to work better and, with proof points in hand, offer paths forward for better outcomes, reduced costs and a higher quality of life for those we serve.
What is one business idea that you’re willing to give away to our readers?
Create a more convenient, innovative and sustainable way to package cereal for consumers of all ages who open and close cereal boxes daily and want more ending up in the bowl than on the floor!
What is the best $100 you recently spent? What and why?
I recently spent $100 for a family shabbat dinner prepared by our daughter, Ally, who is a rabbi. Having our 3-year-old granddaughter involved in the kitchen—and four generations at the table—was incredibly special and enriching for us all.
What is one piece of software or a web service that helps you be productive?
There’s only so much I can keep in my head, so I store everything in Salesforce.
What is the one book that you recommend our community should read and why?
What is your favorite quote?
Michelangelo’s “The greater danger for most of us lies not in setting our aim too high and falling short but setting our aim too low and achieving our mark.”
- While it’s fortifying and humbling to realize a vision and be part of something bigger than ourselves, I didn’t expect the journey to take this long! Now I appreciate that it’s a journey I don’t expect will end. Communities, like people, need continuous care and feeding to be strong and resilient.
- Being the mother of a son with autism and a community developer means my work is never done. I am acutely aware of so many pressing needs and know there’s so much more to do: more home options to build, professionals to train, technology to apply, jobs to create, problems to solve and impact to demonstrate.
- We must inspire the current and next generation of pioneers and engage them to lead where we go next, applying innovation and creativity in this space and building on foundational components that are already part of Phoenix’s supportive community.
- We must continue working to open more doors enabling people with autism, Down syndrome and other neurodiversities to find more places and spaces as valued, contributing members of communities everywhere.
- I want to help empower leaders with access to resources, programs, tools and connections while fueling a new generation of options for people with autism and other neurodiversities through the power of our example—in the collaborations we foster, real estate we develop and communities we build.
Mario Schulzke is the Founder of ideamensch, which he started a decade ago to learn from entrepreneurs and give them a platform for their ideas.