KultureCity is changing the way the world views autism.
Written and Photographed by Karim Shamsi-Basha
Julian Maha cried in the car returning from Vanderbilt University Hospital. His wife, Michele, had never seen him cry before. He didn’t cry a little cry—he wept like a baby.
The couple had just learned that their 4-year-old son, Abram, was autistic.
Michele remembers hearing the word autistic from the doctor; she says that everything after that was just noise.
Abram was an affectionate baby and toddler. He loved playing with his parents and was meeting all his developmental milestones. When he was 15 months old, something changed. Over time, he became withdrawn and eventually stopped speaking entirely. Julian and Michele, both doctors, knew something was off. Each time a milestone was lost, there was an explanation—illness, bullying at school, being in a multilingual family, and so forth. However, autism was never on their radar. Eventually, a trip to Vanderbilt lead to the diagnosis: classical autism, a term previously used to describe lower functioning children on the autism spectrum. “My mind went into shock. I heard things like ‘Abram will be dependent on care for the rest of his life.’ We got home, and it was hard,” Michele says. “As parents, you have ideas and projections of what your child is like and what he will grow up to be. All that was shattered. We plunged into the world of autism, pursuing every single possible avenue to find what was available to Abram. We felt like we were constantly going down the rabbit hole. Abram received intensive Applied Behavioral Analysis (ABA), speech and occupational therapies, averaging more than 50 hours of instruction per week, in addition to his time at school. We had the constant fear of not doing enough ‘early interventions’ and that the clock was ticking. We did everything we could possibly do.”
Michele has determination in her voice. She comes across as a strong woman who had one goal: To help her child. “As a mother, my focus was to get him better. There was no room for ‘poor me,’” she says. “When I hit the pillow at night, complete exhaustion would try to overwhelm me, but one thought kept reviving me: What can I do for Abram?” The Mahas worked with the school system and the community to get their son accepted. Along the way, they met many other families with similar challenges: isolation from friends, inability to go out, inability to join community events, and difficulty in finding babysitters. “It was August 15 of 2013; I remember that evening vividly,” says Julian. “Michele and I were reflecting on our experiences. We are two doctors with resources, and it was still hard to find him the right support and therapy. What about families who aren’t in the medical field? What needs to change? We realized that there was plenty of attention given to research and search for a cure. While that is great and very much needed, no one was paying attention to the culture around autism. The culture has to change—we have to change how society accepts autism.”
KultureCity was born that night out of the couple’s determination to provide a life free of discrimination and equal in opportunities for their child. The nonprofit’s mission is to create a world where individuals with autism and their families are accepted and treated equally. They have garnered national and international attentions with celebrities like Tiki Barber and M.L Carr on their board. Julian and Michele Maha have a never-ending quest to increase understanding and acceptance of autism. “We just want individuals with autism to be accepted, instead of shunned,” says Julian. “We have accomplished many milestones, but the biggest achievement is when we see our friends and community members who have no personal link to autism rise up and be passionate about this work. We want people to take a stand with us to change the culture of autism in our society.”
Michele has a soft place in her heart for autism moms: “When you are dealing with the child day in and day out, including self-inflicted behaviors and aggression, it can be overwhelming,” she explains. “KultureCity creates a ripple affect when families step out of their own world and help other families. Our people are empowered.”
One of the innovations KultureCity is leading is in creating sensory-friendly events, which are held at locations such as the Birmingham Zoo, Regions Park, and the Alys Stephens Performing Center. These events cater to special-needs children with noise-canceling headphones, fidget toys, weighted-lap pads, and other items that make the visit more enjoyable. “What KultureCity is doing for the autism world is similar to what Annie Sullivan did for Helen Keller. Where would the blind world be if it wasn’t for her tenacity?” Julian asks.
KultureCity won the Community Cause of the Year in 2015, as well as the 2014/2015 Best National Nonprofit by Guide Star, a nonprofit watchdog. It was also the best-reviewed special needs nonprofit in the country last year. On August 14, KultureCity will have its Second Annual Gala hosted by football coach Bobby Bowden at the Sheraton. Kulturecity.org includes the details for the event.
KultureCity is a transformative movement to ensure a better future for children with autism. The nonprofit organization shares the belief that all children should be accepted and treated equally, and that the future of these children should not be limited by their medical diagnoses. It is a hope that these children attain the brightest future imaginable. KultureCity achieves this by creating a strong sense of community and a bond between the donor and the receiver, thus ensuring both are equal partners. This achievement has led KultureCity to become not only the best reviewed special needs nonprofit in the United States, but also the fastest growing. To find about how you can donate to KultureCity, visit kulturecity.org.
Latest Project: LIFEBOKS
One in 68 children in the United States has autism. Fifty percent of these children are prone to wandering. Drowning fatalities following wandering incidents remain a leading cause of death among those with autism. LifeBOKS is a toolkit given to autism families in need to educate and share simple tools that may assist them in preventing wandering-related emergencies. Each lifeBOKS contains educational materials, a bluetooth bracelet, a QR code, a QR code shoe tag, and wireless door and window alarms. To save a life and give a BOKS, go to kulturecity.org/lifeboks.
Q&A with Renee Plata
from Puzzle Piece, a pediatric outpatient clinic for children with special needs
Q: How has having a child with autism affected your life?
A: My child has led a path for me to completely change how I live. She has been a gift that has opened my eyes to look at the world in a different way. Actually, she is a gift to the world. To have a child with autism is hard. You change how you view the world in a positive way. It changes your concept of what is important in life—family.
Q: What is the goal of a place like Puzzle Piece?
A: To ensure a supportive and accepting environment for children with special needs.
Q: How has KultureCity helped?
A: KultureCity is doing something that has not been done before: Motivating others to accept autism and to think autistic people are valuable and not unfortunate poor things. To believe they can be the real essence of life. To know they can love and give. To value them as human beings. To love them.
Q: What should people who come across an autistic child do?
A: When you interact with a child with autism, you need to embrace the whole child and the whole family. You need to look at their strength and how to help that child be accepted by the community and see how they can be valued.
Q: What is the hardest part about having a child with autism?
A: You’re afraid that you will die before them and want to know deep down they will be OK.
Q&A with Dr. Mitchell B. Cohen
Katharine Reynolds Ireland Professor
Chair, Department of Pediatrics
University of Alabama at Birmingham
Physician-in-Chief, Children’s of Alabama
Q: How is Children’s Hospital helping in the care of people with autism?
A: We are creating a new Division of Developmental Pediatrics in order to embark on a significant expansion of autism care and research in the Department of Pediatrics and Children’s of Alabama. This new division will include and build on the existent resources in the Sparks-Civitan Clinics for Developmental and Learning Disorders at UAB. These clinics will soon join the new efforts in Pediatrics to put diagnosis and medical treatment of autism for children and families in Alabama as a first priority. We are keen to expand our capacity for providing medical management of autism, to discover the genetic causes of autism, and to use the current medical therapies to their maximum benefit. We are also developing new medical and behavioral therapies for children and families with autism so that the best care and outcomes in the country are available here.
Q: What types of research are you performing?
A: We are committed to building research teams with scientists across UAB and the HudsonAlpha Center for Genomic Medicine to perform wide-scale genetic sequencing aimed at discovering genes responsible for autism and neurodevelopmental disorders. We will build a program to educate researchers and physicians so they can incorporate genomic information in their day-to-day research and patient care. These clinical and research programs will open training opportunities for students and medical trainees to make new discoveries in the future. Toward this end, we are recruiting new faculty and fundraising to create the new Division of Developmental Pediatrics and a UAB Neurodevelopmental Center.
Q: What resources are available for families with autistic children in Birmingham?
A: We hope to partner with established organizations such as Glenwood, Mitchell’s Place, and KultureCity to serve the children and families with autism and neurodevelopmental disorders in our community. These organizations play a vital role in our community. One of our roles will be to make the medical diagnosis and identify other conditions that cause symptoms similar to autism or that co-exist with autism, such as Fragile X syndrome, tuberous sclerosis, epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder. We don’t know what causes autism, but it is likely that both genetics and environment play a role. We need to learn more. We will work to find the cause(s) of autism as a step toward finding treatments that improve the lives of children and families with neurodevelopmental disorders today and tomorrow.