Humor. It’s a powerful thing that can get us through all kinds of life events, cycles and seasons.

My husband Rob and I recently celebrated our 37th wedding anniversary. Admittedly, the years haven’t always been easy as we’ve navigated a predictably unpredictable life with autism. During some of our most challenging moments, Rob’s humor has kept us laughing through the hard stuff.

I recall a memorable (though forgettable) era of house floods, including one particular Saturday morning when young Matt (diagnosed with autism at age 2) had enjoyed unraveling the toilet paper before flushing it (with the cardboard roll) down the toilet. I also remember the throbbing at my temples as we attempted to contain the water on hands and knees in our living room, the task too challenging for every bucket and towel in the house. Yet, Rob found some humor in it all, turning a pending migraine into hysterical laughter.

A recent communique by Korn Ferry CEO Gary Burnison conjured other situations where humor saved the day—even years! Gary writes about humor in business and life while reflecting on his early career: “If someone had asked me to describe a great leader, I probably would have said someone with vision, confidence, courage, strategic thinking, a growth mindset… But a sense of humor—not so much. Except humor can be a potent leadership tool when wielded with emotional intelligence—empathy, to know what the other person is going through; authenticity, to see ourselves and others clearly; and humility, to be able to laugh at ourselves.”

He’s right! Indeed, life with autism keeps us empathetic, authentic and humble—and humor can see us through.

With SARRC and First Place, we’ve teamed up with pioneering leaders from around the world throughout the decades—helping to keep us grounded, moving forward and finding all kinds of reasons to smile. Most recently, the First Place Global Leadership Institute partnered with the Autism Housing Network, ASU Morrison Institute for Public Policy and a Leadership Advisory Board to create A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities.

As the go-to source and new narrative for igniting a marketplace of options everywhere, we aim to raise the bar on a new generation of options so that a diagnosis need not stand in the way of friends, jobs, supportive communities—and homes. Through a broader and more robust marketplace, individuals can better match their needs and interests with homes they choose, combined with natural supports and long-term support services. Together, we can and will inform outcomes demonstrating what works, what needs to work better and how supportive policies can better align all sectors.

Thanks to this study, I’m also able to describe Matt in terms others can better understand as a man with moderate support needs living with self-directed support in a consumer-controlled property at First Place–Phoenix. Just as being a senior doesn’t reveal one’s housing needs and wants, neither does a diagnosis of autism, Down syndrome or other intellectual and developmental disabilities.

While I can’t always claim to understand Matt’s humor or his occasional hysterical laughter, I do know his smile can light up a room and inspire a business, SMILE Biscotti. Yet, there are many things people do not see about Matt that are not included in any study but still celebrate his individuality. Here’s are just a few ways we, his parents, describe him:

  • A man of few words but with a lot to say
  • A live-in-the-moment kind of guy who is more interested in playing a game and tying the score than winning
  • Master egg cracker and SMILE biscotti packager
  • Hardworking
  • Spirited and cheerful
  • Kind-hearted—Matt has never done a mean thing to anyone in his life!

Please mark your calendar and join us this spring for the ninth First Place Global Leadership Institute Symposium Webinar April 7–8, 2021, when we will gather to map out more priority items for the year(s) ahead—and surely share some smiles along the way!

Oh, the frustrations of not being able to find the words to describe what you want, speaking without being understood and others not appreciating what you need.

Through the years, this has been our son Matt’s experience. While his progress at every age over almost three decades has also been fortifying, confidence-building and empowering for him and his family, we still have a way to go.

During those same years, I, too, found it difficult to find the words and means to convey what Matt needed and what we wanted for him outside our family home. I was challenged to articulate a new approach to housing and community development options in comprehensible terms, recognizing there is no one-size-fits-all or diagnosis-specific approach.

Those experiences and more drove a new report, A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities. Led by First Place® AZ and the Autism Housing Network, the report offers a 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.

Last month, we introduced the study to pioneering leaders from across the country and around the world at the First Place Global Leadership Institute’s eighth semi-annual symposium—hosted webinar-style. Nearly 600 people registered for the event—a silver lining of this era as we connected with public, private, nonprofit and philanthropic leaders from nearly every state, about 300 cities and six countries.

It’s also a testament to the persistent, urgent need for housing and community solutions, the result of an unprecedented number of children with autism transitioning to adulthood and the stark reality of a disjointed, disconnected support system combined with limited housing options. Current data indicate more than one million U.S. adults with intellectual and developmental disabilities, or I/DD—autism, Down syndrome and cerebral palsy—live with a caregiver over age 60.

The report raises the bar on a new generation of options so that individuals with different abilities and their families recognize that a diagnosis need not stand in the way of friends, jobs, supportive communities—and homes of their own.

Named for the 2016 PBS NewsHour series featuring Greater Phoenix as “the most autism-friendly city in the world,” A Place in the World is the sister study to the groundbreaking 2009 report, 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. Opening Doors resulted in the founding of First Place AZ, a real estate and community developer, and the Autism Housing Network, an online platform bringing together the best ideas and resources in housing for adults with autism and others with I/DD.

A Place in the World is a unique collaboration among a wide array of partners, including Arizona State University’s Watts College of Public Service and Community Solutions and its Morrison Institute for Public Policy, the First Place Global Leadership Institute and its Daniel Jordan Fiddle Foundation Center for Public Policy, Autism Housing Network, and pioneering leaders from across the U.S. and around the globe.

Through a broad and more robust marketplace, individuals can better match their needs and interests with homes they choose, combined with natural supports and more formal long-term support services. Together, we can and will inform outcomes demonstrating what works, what needs to work better and how supportive policy can better align the interests of all sectors.

The report uses descriptive language defining features, amenities, locations, price points and economic realities in straightforward terms for consumers, developers, providers and funders. By aligning housing, long-term support services and community supports expressed in precise terms for the benefit of those poised to deliver, A Place in the World effectively fuels a dynamic marketplace of options.

Report sponsors include UnitedHealthcare Community Plan, the Phoenix IDA, the Arizona Community Foundation and Bill and Alyssa Sunderland, leaders who recognize the value of housing as a major social determinant of health and the need for a common language to inform, improve and launch a marketplace of more innovative housing.

Through the robust collaborations that made A Place in the World possible, we can—and will—fuel a new generation of real estate that promotes greater diversity, expands choice, drives solutions and yields more positive outcomes. Please be part of this journey and let us know how you see yourself becoming involved. Onward!

Lara Stolman, filmmaker, journalist and mom to a son with autism, recently visited First Place–Phoenix and brought her award-winning documentary “Swim Team” with her for special screenings for staff and residents and their family members. Swim Team follows a group of teenage boys on the autism spectrum and their families after the boys join a competitive swim team and learn the meaning of trial and triumph. They discover how their abilities in and out of pool help them overcome limitations and experience what it feels like to reach their potential in life—and to win, too! Stolman has done work for NBC, MTV, and HBO, among other media companies with a national audience. We sat down with her for some personal insights into the amazing journey that led to the making of Swim Team.

Q: Give us a sense of how and when Swim Team came to be. What compelled you to make a movie about this unique group of swimmers? 

A: When you’re a creative person with experience working with media companies, it’s common to ask yourself, “When am I going to tell my story?” I didn’t know what my story was. Then I had a child diagnosed with autism. I spent lots of time during the early-intervention years becoming an autism expert. I also learned that the leading cause of death for kids with autism is drowning, so I began a search for swim lessons for my child. That’s when I found the McQuays [Mike and Maria]. Within minutes of meeting Coach Mike, he made a huge impression on me. He said his Special Olympics swim team was going to “dominate the competition.” I had never heard this kind of positivity before. For so long I had heard so many negative things from so many people. Children with autism were constantly being defined in terms of what they couldn’t do. Coach Mike had a whole different take. He focused on all the things his kid and other kids like him can do. The story unfolding before me needed to be told. My instincts as a producer kicked in. I knew I was at the right place at the right time to make an impact with a film like this and change minds about what people with autism are capable of.

Q: How did your son inspire you in your approach to the creative process for the film?

A: Swim Team is entirely influenced by our story and experiences and everything I’ve learned raising a child on the spectrum.

Q: Describe your own challenges and triumphs making Swim Team. 

A: I was ready creatively. I also had lots of production experience. The challenge was fundraising and figuring out the marketing and distribution of an independent film. No one hired me to do this. I needed to make it happen. Every step of the way I wanted to make sure it got to the next step. Before we finished editing, I sent a 10-minute sample to the New York Times—and they loved it. This led to their commissioning a short film for the NYT website. After that, people started sending money, supplementing private donations, grants and a personal investment. Film festivals, community screenings, broadcast by PBS’s POV, excellent reviews and the availability of the film on Netflix, Amazon and iTunes all contributed to its success, both nationally and internationally. Robert DeNiro [who has a son with autism] introduced it at the Tribeca Film Center. And the McQuays were even chosen as ABC World News Tonight’s Person(s) of the Week. Swim Team has won 14 awards—and every single one was absolutely thrilling!

Q: How do you see your home state of New Jersey—as noted in your film, the state with the highest incidence of autism (1 boy in 26) in the U.S.—as a nexus for more public support for special populations in the future? 

A: That was when the film was released in 2016, but the rate has increased since then. Not all states report figures on autism. New Jersey does a more thorough job of gathering data. Filming Swim Team allowed me access to public schools, where I shot some scenes in special ed classes. I learned a lot about the system by observing, especially how important it is as a parent/teacher/coach to have high expectations. Coach McQuay never saw limitations in these kids. Believing what’s possible can turn into reality.

Q: Can you give us an update on former and current Jersey Hammerheads, including the amazing McQuay coaches in the film?

A: The Jersey Hammerheads are still swimming, as are the four boys who are the focus of the film. I know that Mikey still works at the zoo and Kelvin, who communicates with me via text, is part of a job training program. I stay in very close touch with the McQuays and generally keep up with everyone.

Q: What are your thoughts on the current housing crisis and what you’re learning at First Place and across the country?

A: This film was a huge transformational experience for me. It showed me what the future looks like for my son. It stresses the importance of community, of inclusion. Every community has an opportunity to connect on how best to support people with autism and developmental disabilities. I came to Phoenix because I’ve been hearing how Denise has done wonders with First Place. It’s revolutionizing housing for adults with autism. I want to see it replicated across the country. We’re at a crossroads and we have to change things. Our adults with autism need to be living in a pleasant environment where they can connect with one another and grow, with the support they need and opportunities to learn and work. More than ever, we can’t ignore that we have a huge population coming of age. Old models won’t do. Parents like Denise and me won’t stand for it.

(2019 Summer Series, Blog #5)

Since Matt moved into First Place–Phoenix, we’ve learned that when the skills, training and infrastructure are in place, so much is possible!

Still, we can’t (yet!) claim that everything is perfect for Matt; we still have plenty of things to worry about. His breakthrough seizures persist every six to eight weeks. I’m still pondering foolproof plans for cutting Matt’s fingernails and toenails every week (and checking for hangnails, too). We’re also working with First Place staff on a system for how Matt can take note of empty household and depleted grocery items and add them to his shopping list via his indispensable Alexa Echo.

And let’s not forget oh-so-important family discussions, wills, medical records and myriad other items, including ongoing updates with his state-appointed support coordinator and services providers.

As the next chapters unfold, we are making new lists of priorities and taking our next big steps with Matt.  We are preparing for his daily life and beyond, because we realize stuff changes—and so do we. Who among us is still working at our very first job, living in our first home or lucky enough to still be with their first love? (I proudly claim that last one!)

And yet, we’ve made exciting progress. Matt can live at First Place during the week and enjoy weekends at our home. He can join us for a vacation or find that he often prefers a staycation. He can hang with friends when he chooses for lunch, dinner or games of UNO or Scrabble. Based on this week’s schedule of bingo, bowling, “Beautiful Beats” drumming class (SUPER popular!) and The Beatles karaoke, I’d say we’re on our way.

What we all need are options and choices and ways to make decisions, so that we can support ourselves and those we love through family, friends, friends who become our family and a supportive community—a community that understands how to support Matt professionally through his therapy, personally through his life skills and more casually when a stranger spots him needing help in the grocery store or perhaps because he has lost his way.

While there’s still a lot of work to do, we’re getting closer to allaying our biggest worry of all about the future: wondering how Matt’s life will be like without us. After 28 years—26 of those post-diagnosis—of living with Matt, we’re now in a position to ensure that he can have a meaningful and enjoyable life. Matt is learning how to live his life (with support), while we’re exploring ways to live ours—all thanks to having choices.

Up next, blog #6 of our summer series, inspired by a collection of images over the past year reminding us of how far we’ve come!

(2019 Summer Series, Blog #4)

After working on Matt’s transition to his new home over several months (years!), Rob and I made the monumental decision for Matt to spend an entire week at First Place–Phoenix without us while we spent our 35th wedding anniversary in Kauai—just the two of us! With Matt making steady progress settling in and an able on-site staff, we took the plunge.

Leading up to our anniversary trip, we prepared and tested a lot: monthly master schedule for work, meals and socializing; daily schedules for his personal routines; high-tech tools, including camera apps and FaceTime practice sessions; and more. The combination of First Place staff and family being front and center for Matt also contributed to that critical peace of mind for us being so far away.

With systems in place, including his established SMILE Biscotti work routine, we just needed to get on the plane and put it all to the test:

Encouraged by the experience, we increased Matt’s time at First Place upon our return. He began spending weeknights there and weekends at our family home. Weekends provide us with valuable, concentrated time to observe what Matt can do, test out new skills and set goals for continued forward momentum toward increased independence. Years of IEPs have helped us appreciate the value of goal setting and the fact that Matt continues to learn—as do his parents!

Our next adventure? Yellowstone National Park this fall. Rob and I plan to experience all of the national parks in the years ahead as we enjoy Matt’s ever-increasing independence—from up close and afar!

Up next, blog #5 in our summer series: The journey continues!

(2019 Summer Series, Blog #3)

During months of trial and error and a detailed 16-step shaving process that Matt followed faithfully, his face cuts continued. That’s when we resorted to the one-step electric shaver solution. On this journey of right turns, left turns, U-turns and we-don’t-know-which-way-to-turn turns, simplicity is often the best solution, along with the attitude of not letting perfection get in the way of progress.

While the move to First Place–Phoenix Apartments happens over a weekend or a night for most residents, the course has been different for Matt, a young man with classic autism who lives in the moment and who has a higher level of support needs than many of his neighbors.

Our family has also had a lot to do with Matt’s extended orientation and transition. It has taken time to build our trust and confidence that protocols are in place, that our questions about how he’s doing at any moment can be answered and that his seizures are under better control. Our love, joyful time together and attachment to Matt also play a big role.

As noted in blog #2, lots of big stuff must be addressed on our watch—but there’s the little stuff, too:

Matt is not as independent as the typical First Place resident, as you may have seen in the PBS NewsHour series acknowledging Phoenix as “the most autism-friendly city in the world.” He has limited communication and social skills, is generally unaware of any kind of danger and lacks the ability to let you know when something isn’t right. He occasionally suffers from full-blown tonic-clonic seizures that are unpredictable and can be extremely dangerous.

But Matt also has a lot going for him. He’s sweet, friendly and highly adaptable. He’s an extremely hard worker and will, without fail, complete whatever tasks are on his daily schedule. He loves playing games with others, is always a good sport and brings out kindness in others. With those qualities in mind, and despite his challenges, we continue to do our part to ensure he’s comfortable, happy—and a good neighbor—at First Place.

Next up, Blog #4 – Test Run: Celebrating Matt at First Place—and our 35th anniversary with a vacation!

(2019 Summer Series, Blog #2)

At 7:30 p.m. one recent evening, Rob and I were alerted via the Life360 tracking app that Matt had left First Place and was traveling down Third Street toward Central Avenue. We knew the First Place van had taken Matt and other residents out for a weekly Tasty Tuesday excursion but had also returned everyone to the property. So, what compelled Matt to take a hike? He never leaves the property alone.

Alarmed to say the least, we proceeded to check out all the systems we have in place. First, Matt’s in-home camera didn’t show any activity. Second, we saw he had not yet checked off the next item on his iPad schedule or contacted me for our nightly FaceTime visit—both of which are listed on his list of daily to-do’s.

What to do next? We switched to a simple phone call to First Place inquiring why Matt had left the property and where he was going. With great relief, we learned from the concierge that Matt was safe and sound in his apartment—but without his iPad. He had left his backpack in the First Place van after the group dinner out at a local restaurant. In his trusty backpack were his iPad and iPhone, both with the Life360 tracking app.

Staff recognized immediately that his backpack was missing because it wasn’t hanging in the usual low-tech “drop and go” spot, an area where residents can routinely charge their electronics and store their keys and other belongings for quick drop-off/retrieval. Whew! What a great test of our systems; we passed with flying colors—this time!

Matt often accesses other items in his personal technology portfolio—namely Alexa on his Echo (high-tech) to bring The Beatles, Elton John and The Beach Boys into his home, update his grocery list and check the weather. Based on the forecast, he consults his laminated “What do I wear?” chart (low-tech!) before laying out his clothes for the next day. Another app allows Matt to recognize who’s at the door and respond to a ring accordingly (after ignoring our knocks and inadvertently leaving us stranded outside his apartment). And he depends on a Sharpie ink mark to tell his right shoe from his left.

Matt still deals with breakthrough seizures despite medication, so keeping a watchful eye on him and making sure he’s safe is priority number one. Nearly all his furniture is soft, and area rugs absorb sound and offer cushioning. A variety of high- and low-tech systems is essential as we strive to balance his personal privacy and independence with safety concerns.

We remain focused on Matt’s many strengths, as well as the caring and capable community empowering him to live more independently as he enjoys more life experiences and benefits from support specialists, community life, technology, family members and neighbors, all of which play a crucial role in his daily life—and ours!

Next up, Blog #3: Gradually Building on Success: Taking stock of the little stuff, too

(2019 Summer Series, Blog #1)

Matt is a 28-year-old man with “classic” autism who has been able to work, communicate with some limitations and enjoy a good game of Uno or Scrabble. We take stock in these and other strengths, including his ability to make most of his meals (in part due to his self-limited menu). And yet, while he’s learned how to peel and cut apple slices (one of two fruits he’ll eat), he’s not able to tell a good apple from a rotten one.

So here’s what Matt can do:

In a relatively short time, Matt has learned the value of his apartment key and what to do if he forgets or loses it, the joys of Face Timing with mom and dad, and the creature comforts of his new digs.

And then there’s what he can’t do:

More about Matt is documented in the First Place Interest Survey, reminding us of his interests and those we’d like him to explore, and his Personal Profile, acknowledging areas where he can be independent, needs some support or is totally dependent.

We’re still working on more accurate responses to Matt’s confounding “wh…” questions, thanks to weekly parent training sessions and monthly staff meetings, including those with clinicians from the Southwest Autism Research & Resource Center (SARRC).

But learning to live independently didn’t start here. It started with dedicated First Place staff to build a week in his life, day by day, figuring out how it would all come together. Matt started with just a few pieces of furniture and a few overnights a week at First Place with me sleeping on the couch—listening, lying awake, scribbling notes about Matt’s many needs (OK, and fretting some, too…).

We’ve started this journey grateful that we’re by his side—and that First Place and SARRC are by ours, keeping us all on the right path and feeling more confident in our futures.

Next up, Small Steps and a Big Team: The benefits of high- and low-tech solutions (Summer 2019 Series, Blog #2)

Our 2019 summer blog series chronicles the journey of our son Matt’s transition to life at First Place–Phoenix, thanks in large part to Rob—Matt’s tech-savvy dad, “father of fun” and my husband of 35 years—our supportive family and the talented First Place team. We hope it will assist you or those you love through some valuable lessons learned along the way.

While Matt has been our personal inspiration, we’ve reached out far and wide over the past two decades to inform the design and operations of First Place–Phoenix through the evaluation of 100 properties for special populations across the U.S. We’ve hosted focus groups, national design charrettes and a national family roundtable, acknowledging hopes, dreams and fears.

Much time has also been invested in community life at First Place, with a focus on how residents connect with the broader community where people make friends, find jobs, access healthcare, enjoy lifelong learning—and have fun!

We recognize the huge transition this represents for us as parents seeking to build confidence in the future: Matt’s and ours. Every planning session, every hard hat tour and now every day in real time remind us of Matt’s momentous, complex and profound journey.

We hope you’ll join us on this summer blog series—and benefit from some of the valuable, enduring lessons we’ve learned along the way!

Next: Plugging the Holes: Taking note of what Matt can—and can’t—do (Summer Series Blog #1)

My older sister Debbie and I played under this very tree more than 50 years ago. Our home, our street and the neighbor’s house seemed so much bigger back then. I vividly recall backyard birthday parties, twilight games of hide-and-seek and our parents teaching us to ride the bike with wobbly training wheels.

Like the roots of this tree, home was our anchor—letting us grow, learn and celebrate as it provided comfort and helped us build confidence.

In the same way, First Place–Phoenix represents an anchor to residents through a suite of supports, community life and friendships, as well as connections to jobs, healthcare, lifelong education and more. It’s where people are honing their independent living skills, sharing new experiences and creating collective memories that build lasting relationships and community.

Even at this early stage (First Place opened in early July), several of our residents are experiencing things for the very first time as they chart their own paths to more independent, fulfilling lives in their own homes. Here’s what Jenny’s mom reports: First Place has touched our lives, put music in our hearts and tears of joy in our eyes. I spoke with Jenny and she told me she has a job. We are so excited and thrilled! She has learned so much and her independence is soaring. Her own apartment, social activities, friends, cooking, work training and a job…it’s what parents of children with autism dream of. And now, it’s a reality. We are jumping for joy here in New Jersey!”

Riding that bike wasn’t easy at first, even with the training wheels. We fell off, skinned our knees and sought comfort under the shade of that tree before being coaxed to get back on. And then we rode off, more competent and confident, ready to explore again. Go, Jenny, go!