As we begin Autism Awareness Month, it's important to appreciate how far we've come in understanding autism and helping autistic children lead productive lives. Yet challenges in combatting stigmas remain, particularly in communities of color.
Broaching the subject of autism can be a difficult one for African American, Latino, South Asian and other Asian American communities, and among faith groups like Hindus, Muslims, and Sikhs, because it's not discussed as much in the open. While groups such as the Hindu American Foundation (HAF) are working to help promote education about autism, organized advocacy and awareness within communities of color is still lacking. In Hindu communities, for example, the lack of education about autism can cause social stigmas, which directly contradict Hindu teachings compassion and acceptance of differences.
For parents of autistic children, the challenge of dealing with the initial diagnosis have been compounded by the struggle to raise their kids in a way that doesn't make them feel singled out or isolated. Lack of knowledge in some communities, particularly about the autism spectrum, makes it harder for some parents to explain the condition to fellow community members or their own relatives.
My fraternity brother Jontue witnessed this firsthand when his daughter Mealea was born. He said he was initially in disbelief after the diagnosis.
"Since I had a speech impediment as a kid and we were teaching Mealea English and Cambodian, we assumed any number of issues could be at play, but autism was never one of them," he said. "After the initial disbelief, terror and guilt sink in, you question what you did that might have led to the situation, but have no idea what happens next. You realize that all the dreams you had for your child will likely never happen. In all honesty, you go through all the states of confronting death, but there's no end."
My good friend Andre had a similar reaction following the diagnosis of his son Elijah, even after his daughter Zaria was diagnosed with autism several years earlier.
"With our daughter, I was not surprised with the diagnosis, because a babysitter had suggested that she might have Autism," he said. "However, I was surprised by the diagnostic process. The doctor avoided saying it outright. She seemed to want us to be the ones to say it. The diagnosis of our son felt more surreal. I wondered how it could have happened to a second child."
For Jontue and Andre, ignorance among friends and family exacerbated their challenges. Andre said there have been times he has felt like his children were being singled out for their behavior.
"People may think the children are badly behaved, and often don't treat them the same as they treat other kids," he said. "They are disregarded or ignored more than others their age. It's especially hard to see that their own family members are uncomfortable with them."
Jontue noted that trying to explain autism was complicated by his family members and in-laws not really understanding how to cope with the diagnosis.
"One of the biggest challenges is the balancing act of wanting people to understand your child without treating them differently. Even now it's a struggle, so I tend to only bring it up if people can't understand why she's seemingly ignoring them. I don't want people pitying her, but just to understand her."
Jontue recounted the awkwardness of telling his family and his wife Phala's relatives.
My parents completely didn't believe it was possible at first and once they accepted it, still had no idea what to do with Mealea and actually advised me against telling my grandmother. They wanted to deliver the news instead. Unfortunately, this didn't help, since my grandmother's response was, "Oh, so she's retarded." The pain of such a comment from a family member, let alone your grandmother, is truly the worst. What's funny is that it was only after Mealea's diagnosis that my older brother told me that his eldest kid had been diagnosed with Asperger's! While no longer considered on the spectrum, it was nice having someone to commiserate with.
Things got more interesting with Phala's folks though, as Phala (and her folks) weren't even aware of a Cambodian word for "autistic." After years of navigating awkward issues of race in our biracial household, having to describe autism in detail to people with absolutely no concept of the disorder is challenging to say the least. Fortunately, Phala's sister was surprisingly compassionate and helped with the round robin discussion, and for that, I'm eternally grateful.
In the years since, Andre and his wife Ashley (one of my close friends from graduate school) and Jontue and Phala, have learned how to better integrate their children with their peers while maintaining vigilance over how they're raised. As Jontue noted, there are still some precautions the parents of autistic children must deal with.
"People tend to think autistic people are either savants or just socially awkward," he said. "While there are some, these are the minority, not the majority. Many people aren't aware of the high rates of drowning among kids on the spectrum, so it's a very real fear of ours and the motivation for us trying to get Mealea swimming lessons (of course, we need special classes, which cost a lot more)."
Both Jontue and Andre have navigated through the stereotypes and stigmas associated with autism, and their children have developed strong support networks at school. But their own education is continuing, as they've dealt with their children's dietary changes, and their transformations from reluctant parents to advocates. Andre notes that the public awareness campaigns on autism might become a double-edged sword.
"I think that today, Autism is getting more attention, which is great," he said. "But I sometimes worry if the popularity of the cause overshadows the real hardship that these families are truly experiencing."
Jontue offered advice for any parent dealing with an autism diagnosis, and urged them to look at the bigger picture.
"To start, it's not your fault," he said. "Next, it's not going to be easy, but you have to take one day at a time and try to work with your child, not on your child. Cherish the child you have and don't get caught up on the child you wish they were. When frustration sets in, don't forget that the child is also frustrated and picks up on a lot more than they may show; they just don't know how to articulate it. Autistic children tend to be creatures of habit and routine, so you may have to sacrifice to help them be the best they can be. Finally, you'll be your child's biggest ally and advocate, so be prepared to stand for them at all times."
For more information about autism, visit www.autismspeaks.org