World Autism Awareness Day: Support, Not Stigma
Clubs seek to increase awareness and understanding of the autism spectrum
When schools in Kenya reopened in January 2021 after a nine-month closure due to COVID-19, Sylvia Mochabo was looking forward to her 11-year-old son, Andy, returning to the classroom. Their schedule, like those of millions of families around the world, had been disrupted by the pandemic, and for Andy, who was diagnosed with autism at age 3 and who struggles with adapting to changes in his routine, the closures and lockdowns were particularly challenging. But his first day back at school didn’t go as planned.
“His school refused to take him back until he was wearing a mask, which Andy isn’t able to do because autism makes him sensitive to physical sensations. Without speech therapy, he began drooling more. He found the mask unbearable,” says Mochabo, a member of the Rotary Club of Muthaiga. Because he wasn’t in school, Andy also lost access to discounts on occupational therapy sessions, which are crucial to his development. Now, Mochabo has to pay the full price for home-based support.
“I’ve had to reduce the number of sessions from thrice weekly to once; without the discount I can’t afford to do all three sessions, even though I know Andy needs them,” she says. “It’s heartbreaking.”
Autism spectrum disorders (ASD) consist of a range of developmental disabilities that can make communication and social interaction difficult and can also cause behavioral challenges. People with autism may think, act, learn, and communicate in ways that are different from most other people. According to the World Health Organization, 1 in 160 children globally has an autism spectrum disorder.
In recent years, the reported prevalence of the disorder has been trending higher, and this is consistent across data sources from countries as diverse as Germany, Iran, and Japan, according to the U.S. Centers for Disease Control and Prevention. It is unclear how much of this increase is due to changes in clinical definitions of ASD or to better efforts to diagnose the condition. However, the CDC doesn’t rule out an absolute increase in the number of people with ASD, and researchers are looking into why this might be the case.
For Rotary member Corina Yatco-Guerrero, her child’s diagnosis came as a shock, even though she and her husband are medical practitioners — she’s a neuro-ophthalmologist and he’s a neurologist. It took them a while to accept their son’s diagnosis and find ways to support him with speech therapy, occupational therapy, and a special needs education.
“For me, the most important thing that parents and families should know is that autism is not a life sentence, that children with autism have a right to life and proper special education that will make them better equipped to face the challenges that they will face,” says Yatco-Guerrero, a member of the Rotary Club of Sta. Ana (Davao), Philippines.
“Parents must learn to accept and not dwell in their state of denial, and to love their children and give them the best in life,” she says. “A child with autism is lovable, and they deserve our love, too.”
Families of children with autism often have to grapple with the lack of social understanding about the condition, even in cosmopolitan cities. Many families experience social stigma, and in some countries the condition is frequently attributed to witchcraft or something that the parents did wrong.
Early interventions, starting before age 5, have been shown to yield the best results for children with autism. “Children need to be assessed at young ages to determine gaps in development and allow for early intervention,” says Pooja Panesar, director and co-founder of the Kaizora Centre for Neurodevelopmental Therapies, a Nairobi institution that uses a step-by-step approach to teach children crucial skills such as communication and toilet training, while reducing behaviors of concern.
“Through this process, we have had great success, from children receiving early intervention who transition into mainstream education to adults who are now living independently and maintaining permanent employment,” Panesar says.
By the numbers
Portion of people with autism who are nonverbal
2 in 3
Children ages 6-15 with autism who have been bullied
Cost of caring for Americans with autism in 2015
Source: Autism Speaks
There are several management styles for the condition, and one size does not fit all. Some children might need a lot of help in daily living, while others might be quite independent. “If a child is nonverbal, then having a speech therapist would help. If a child has sensory integration problems, an occupational therapist can help,” says Yatco-Guerrero.
Mochabo, a single mother of three, has found support and encouragement from her Rotary club, and with the help of fellow members, she has started to do more to spread awareness and advocate on behalf of children with special needs. Every year, in partnership with other clubs in Kenya, the Rotary clubs of Machakos, Nairobi, and Thika host the Sunshine Rally, a day of fun, games, and entertainment for children with disabilities.
“I attended a Sunshine Rally and realized that I wasn’t alone in this journey, and being a Rotarian gave me the desire to do more and to be of service to other families like mine,” says Mochabo.
Inspired by the rally, Mochabo founded an organization called Andy Speaks for Special Needs Persons, named for her son, to advocate on behalf of people with special needs and for an end to the stigma they face. “We can support each other all year round,” she says.
Yatco-Guerrero is also involved in creating awareness of autism, in her case through a nationwide organization called Autism Society of the Philippines (ASP). This group advocates for acceptance and integration of people with special needs into society.
“Our Rotary District 3860 has been actively advocating for awareness and acceptance,” Yatco-Guerrero says, “by joining ASP’s annual Angels Walk, a one-day march of persons with autism and their families and teachers. It draws thousands of people by the year, thus earning a spot in the news, which in turn helps disseminate autism awareness throughout the country.”
Other clubs around the world also have organized projects related to autism. The Rotaract Club of Çekirge, Turkey, put together a series of monthly art workshops for autistic artists working with mosaic and painting, and they plan to organize an exhibition of the artworks to raise awareness about autism. In Malaysia, a global grant funded a series of workshops, hosted by more than a dozen clubs, that provided early-intervention training for teachers and primary caregivers of children with autism. The Interact Club of Rio Claro-Cidade Azul, Brazil, with support from its sponsor Rotary club and District 4590, created the Inclusion Symphony, a music therapy room for children with autism, to provide a differentiated therapeutic space and to stimulate and expand the interaction and communication capacity of people with autism. And the Rotary Club of Chicagoland Korean-Northbrook, Illinois, organized a global grant-supported vocational training program for youth on the spectrum.
For Yatco-Guerrero, ultimately the home is ground zero for any kind of autism intervention. “Having a special-needs child means the whole family must get involved to make things work and make life bearable for all,” she says. “It is a labor of love because it is not easy, and it will test your patience to the fullest. But it is your own child who needs your help, and help you will definitely give. It involves a lot of sacrifice, a lot of patience and understanding.”
Christine Mungai is a writer and journalist based in Nairobi, Kenya. Her work has been published in the Africa Report, Washington Post, Boston Globe, and Al Jazeera English. Mungai is the curator for Baraza Media Lab in Nairobi, a co-creation space for public-interest storytelling.
World Autism Awareness Day is 2 April.
Help support autism-related projects through The Rotary Foundation. Make your gift at rotary.org/donate.