This past December, Nataly Cuzcueta was brought to tears by a word from her 4-year-old daughter, Kira.
With her little arms outstretched, Kira looked up to her mother and said “up.” It may seem like a simple request, but for Cuzcueta, it was a major milestone and cause for celebration. Immediately and happily, she obeyed. She lifted her daughter into her arms and excitedly twirled around the room, a smile beaming across her face.
“Today has been a day I’ll never forget,” she said.
Miles away at Seattle Children’s Autism Center, Dr. Mendy Minjarez, director of the Applied Behavior Analysis Early Intervention Program and interim executive director of Seattle Children’s Autism Center at Seattle Children’s, celebrated as well. Cuzcueta had captured the moment on her camera and had sent a note of gratitude to Minjarez and her care team.
“It was monumental for our whole team,” Minjarez said. “I remember getting the email and running down the hall excitedly to tell our team. It’s been a long time coming.”
Today, Cuzcueta says the team at Seattle Children’s Autism Center is like a second family. Her twin daughters have come a long way since they first started receiving treatment more than 2 years ago.
When Cuzcueta’s twin girls, Aliya and Kira, turned 11 months old, it was like a switch had been flipped. Her once smiling and babbling daughters turned quiet. In the months that followed, she worried about their behavior. They suddenly reverted to crawling, no longer babbled and stopped making eye contact. More alarmingly, they began to have intense tantrums and would physically harm themselves.
“I felt hopeless and alone because I didn’t know what to do,” Cuzcueta said.
She was told by her pediatrician that her daughter’s behaviors were simply a developmental delay, but in her gut, she knew it was something else. She called Seattle Children’s Autism Center in search of answers.
She said after she called, it was like a weight was slowly being lifted off her shoulders. She no longer felt overwhelmed, but instead felt supported and heard.
The girls were enrolled in an intensive 12-week treatment called the Early Intervention Program (EIP). They also received treatment through the Autism Center’s Biobehavioral Program.
For Cuzcueta, who has waited nearly 4 years to hear her daughter’s voice, the simple request of “up” meant the world to her.
It’s one step closer to communicating, and more milestones to celebrate.
Helping more families in need
There are currently thousands of families who have stories like Cuzcueta’s, but they are still waiting to find hope. Searching for answers and seeking out treatment for a child with autism can be an overwhelming experience filled with uncertainty. Today, 1 in 59 children are diagnosed with autism spectrum disorder (ASD). As the prevalence has steadily increased, the gap for timely diagnosis and coordinated care has continued to widen, negatively influencing a child’s development.
Autism can be one of the most challenging, life-altering neurological conditions families face. Since opening its doors in 2009, the Autism Center has become a national model for effective treatment and pioneering research. It is also a vital resource for families throughout the Pacific Northwest, and the only program in the region that provides uncompensated care: diagnosis and treatment regardless of a family’s ability to pay. Unfortunately, the vast need for services is too great to accommodate.
The wait for diagnosis and treatment — sometimes up to a year — can be agonizing, especially for parents with a child who is losing language, no longer responding to their name, not making eye contact, and experiencing escalating outbursts.
Today, Seattle Children’s is one step closer to a future where all families have access to much needed services. Thanks to the Sunderland Foundation, who have generously donated $20 million to help meet the unique needs of families affected by autism in the Pacific Northwest, more families like the Cuzcueta’s will have access to early intervention programs at Seattle Children’s, and diagnostic evaluation and treatment. The capital gift will support the relocation of the Autism Center, increase annual patient visits, create more opportunities for families to participate in critical research, and over time reduce the center’s wait times for diagnostic evaluations – getting patients the help they need sooner.
“We want families to know we’re here for them,” Minjarez said. “Autism is a lifelong and chronic condition, but that’s the type of relationship we have with our families. We are with you for life. We are excited to have a space that fosters that relationship and mirrors that message.”
Seattle Children’s is currently in the process of planning a renovation to the second floor of the 70th and Sand Point Way building to accommodate a new Autism Center. The new center will have approximately 16,000 square feet. Relocating the center to a larger, specially designed space will open new opportunities to begin realizing Seattle Children’s vision to radically reimagine how patients and families affected by autism are served.
“We’re incredibly grateful for the Sunderland Foundation’s generous gift, which will help us address a vital need in our community by ensuring families impacted by autism can have access to early interventions, expert care and pioneering research,” said Dr. Jeff Sperring, CEO of Seattle Children’s. “Their support allows us to realize a future where families living with autism have the support they need, when they need it.”
A gift that touches home
This gift is also deeply meaningful to the Sunderland family, as they are personally impacted by autism and know firsthand the challenges families face.
“Our hope is that we can help other families who have been touched by autism,” said Bill Sunderland, a trustee of the Sunderland Foundation. “It is important to us that every family has access to world-class treatment and research opportunities, regardless of a family’s ability to pay.”
A bright future
Mental health is complex, and autism is just one piece of the puzzle. The relocation of Seattle Children’s Autism Center is a step toward shifting the paradigm of how mental health care is delivered. Seattle Children’s is working toward a future where children and youth have access to evidence-based mental and behavioral health services when and where they need them. A crucial step includes creating a hub at 70th for patient care, outreach, training and research for mental and behavioral health.
“This space will be our true innovation hub where we will develop new ways of identifying family needs and meeting them,” said Dr. Lawrence Wissow, director of Child and Adolescent Psychiatry and Behavioral Medicine at Seattle Children’s. “It will also be the center of gravity from which we can push out prevention efforts and engage community partners to increase access and reduce stigma and it’s also our chance to design space that heals from the moment someone walks in the door.”