By Larisa Karr
For some time, New Yorker Yveline Alexandre took the subway to work and exited at the same stop with a friend. The woman, a fellow Haitian-American, was a single parent of a seven-year-old autistic boy. When she asked Alexandre if she had any kids, Alexandre, afraid to reveal that she also had an autistic child, told her no.
One day, her friend wasn’t on the train.
“I learned that she [had] killed herself,” said Alexandre, who now lives in Key Largo, FL. “She left a note saying that when you have a special needs child, sometimes you just need a shoulder to put your head on and listen to you.”
Alexandre understood how hard and isolating the experience could be. She had felt ashamed at having an autistic child herself, so much so that after giving birth, she shut herself out from friends and family for a year, out of fear they would find out. Her friend’s death triggered something in Alexandre, something that motivated her to advocate for autism awareness and services in the Haitian community.
In 2015, Alexandre founded Autism509, a nonprofit organization dedicated to connecting Haitian parents around the world with resources and services to help them raise autistic children.
“For an ASD [Autism Spectrum Disorder] parent, if you don’t educate yourself on how to learn and deal with the condition, it can be very difficult,” said Alexandre, whose daughter has been diagnosed with mild autism. “You will never be the person you were before autism.”
Many Haitian-American mothers with autistic children are proactively speaking about autism more openly, something that had not been happening enough in Haitian households because of stigma, they said. Resources and groups such as Autism509 are more available and visible now, as virtual learning in the midst of the COVID-19 crisis exacerbates care for special needs children.
“In the Haitian community in particular, we need to empower each other by sharing resources and having conversations with other parents,” said Berthine Crèvecoeur West, the mother of a 12-year-old autistic son named Alexander. “Autism is seen as something bad, but once we remove that stigma from it, there’s a tendency to help.”
Crèvecoeur West is particularly passionate about ensuring that Haitian parents have access to the proper translation in order to understand the terminology used for autism. She became the first nationally-certified Healthcare interpreter for Haitian Creole in the state of Georgia. She said that oftentimes, simply bringing a bilingual person to Individualized Education Plan (IEP) meetings is not enough, as they do not understand the specific terminology in Creole.
Organizations like the American Autism Association also actively work to help immigrant parents with autistic children adjust to life in the U.S.
“When we’re made aware of someone’s cultural background, we try and explain that a lot of the resources that we have are primarily from the viewpoint of the United States and the way we view and treat autism here,” said Eliane Abou-Assi, Executive Director of the American Autism Association. “We do also work with various organizations around the world to increase an understanding of autism without imposing our Western views and culture.”
Abou-Assi said that the organization will provide videos to parents that encourage them to engage with their child in specific activities, such as painting.
Other moms said they are frustrated with the lack of support in the Haitian community, but they are determined to not sweep it under the rug and keep raising awareness.
“Parents are suffering in silence because we’re told that we shouldn’t speak out, but I take every opportunity I can to speak on it,” said Jeany Sulpha, the mother of an eight-year-old son named Eli. “I’m going to the church and speaking to the pastor to say, ‘Here’s how you can help us and here’s how you can acknowledge our community.’”
Sulpha said she has repeatedly been brushed off by others in her Greensboro, NC community, being told that they don’t have the resources to help her and other parents of autistic children. She has noticed that a lot of parents will simply ignore their child’s condition and treat it like it is not a reality.
For years, Alexandre has attended World Autism Awareness Day at the United Nations with her daughter Alizee, now 21. Every year, she saw parents from dozens of countries, but never Haiti. She decided to start Autism509 after visiting the UN in 2015.
Abou-Assi said that the American Autism Association predominantly works with Black and brown communities throughout the country, including New York and Miami.
“The American Autism Association primarily serves people of color and a lot of the families that we work with take on the work that we do and bring it to their various communities,” said Abou-Assi. “We also work with a lot of students, siblings, and schools at a younger level so that the understanding and determination to create a more inclusive world is something that starts at a younger age.”
Crèvecoeur West, Sulpha, and Alexandre have experienced particular hardships with their children because of COVID-19 and said this is strongly affecting other parents with autistic children as well.
Crèvecoeur West, of Lawrenceville, GA, took matters into her own hands when she noticed her son Alexander’s education regressing as a result of virtual learning. She hired a private teacher and said the difference has been significant. In two months, Alexander read over 65 books and taught himself to count in Spanish, French, and German.
“Here I was with this amazing little boy who has a wonderful intellect and I’m watching it get wasted because his teachers weren’t trained how to use Zoom,” said Crèvecoeur West, a learning and development specialist. “I made myself a commitment where we would evolve through this pandemic and I created an environment for him where he’s going to feel like he’s at school as much as possible.”
Sulpha is still struggling with a lack of support. She said even though the teachers do their best by dropping off Eli’s laminated school material at their door, COVID-19 has caused him to regress as well.
“It’s been extremely difficult and really stressful to the point where I had to end his school year early last year because I couldn’t commit to the process,” she said. “I have to be a speech therapist, an occupational therapist, and an autism behavioral health therapist now, but I still have to pay my bills.”
Sulpha, who previously worked as a doula, started an overnight customer service job last month because she has to attend to Eli throughout his school day.
Although problems persist, all three mothers are determined and optimistic that more awareness about autism will be raised in the Haitian community.
“I hope wherever my friend is at, she’s proud of me,” said Alexandre. “If I can stop one parent from committing suicide, I’ll be happy.”
April is recognized as World Autism Month. For additional support and resources, parents can contact Autism Speaks via email at firstname.lastname@example.org or by phone at (888) 288-4762. The National Autism Association can also be reached via email at email@example.com or by phone at (877) 622-2884.