We are so lucky to be blessed with the opportunity to have a guest blog post by Kpana Kpoto of Sailing Autisic Seas.
I remember when I first learned that my son was on the autism spectrum back in 2011. Coming from an African and Caribbean background, I did not know anyone else with autism. Honestly, it felt isolating. It took me months before I could openly discuss my son’s diagnosis. My inability to talk about it was not because I was ashamed but because I was grieving the dreams that I had for him when he was born. Soon enough I realized that I had to shake myself out of this fog and start getting him the help that he needed.
But what happens if a parent never shakes them self out of this fog? What happens when a parent is ashamed to tell others that their child is on the autism spectrum? I know in the black community we don’t like to talk much about mental health and developmental disabilities. Still something has to be done to eradicate the stigma that comes with developmental disabilities, such as autism in our community. What we have to realize is that not talking about it does not mean that it does not exist.
The stigma surrounding autism can lead to a parent being in denial when they notice that their child is not developing typically. It can lead to a parent overlooking the signs that something is wrong and overlooking the importance of having their child evaluated. We already know how important early detection is. We know the difference early intervention can make in the life of a child who is delayed developmentally. So how can we reduce the stigma surrounding autism? Here are two ways that come to mind:
Educate: There is a lot of awareness about autism but I am not sure that people really understand what it is. According to the Centers for Disease Control (CDC), “Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges.” I like to stress the word spectrum and point out that autism presents itself differently in each individual. Like we always say in the autism community, when you see one person with autism you have seen one person with autism.
Besides helping others to understand what autism is, it is also important to continue awareness campaigns not just in April but year round. It is important because awareness can lead to acceptance. This is what families like mine want. I want to know that my child is not seen as a second class citizen.
Advocate: As parents of children on the autism spectrum, we can’t afford to be quiet about it. The stakes are too high. We need to speak up and keep the pressure on our legislators to enact meaningful laws that can bring autism insurance to all 50 states. We need to speak up so that the process to get the Medicaid waiver is not so complex and confusing to parents.
We need to speak up about special education and ensure that our children’s rights under IDEA are not violated. We need to speak up to stop bullying against people with autism. We need to speak up to bring more awareness to wandering. Too many of our children are dying.
But what happens if a parent never shakes them self out of this fog? What happens when a parent is ashamed to tell others that their child is on the autism spectrum? I know in the black community we don’t like to talk much about mental health and developmental disabilities. Still something has to be done to eradicate the stigma that comes with developmental disabilities, such as autism in our community. What we have to realize is that not talking about it does not mean that it does not exist.
The stigma surrounding autism can lead to a parent being in denial when they notice that their child is not developing typically. It can lead to a parent overlooking the signs that something is wrong and overlooking the importance of having their child evaluated. We already know how important early detection is. We know the difference early intervention can make in the life of a child who is delayed developmentally. So how can we reduce the stigma surrounding autism? Here are two ways that come to mind:
Educate: There is a lot of awareness about autism but I am not sure that people really understand what it is. According to the Centers for Disease Control (CDC), “Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges.” I like to stress the word spectrum and point out that autism presents itself differently in each individual. Like we always say in the autism community, when you see one person with autism you have seen one person with autism.
Besides helping others to understand what autism is, it is also important to continue awareness campaigns not just in April but year round. It is important because awareness can lead to acceptance. This is what families like mine want. I want to know that my child is not seen as a second class citizen.
Advocate: As parents of children on the autism spectrum, we can’t afford to be quiet about it. The stakes are too high. We need to speak up and keep the pressure on our legislators to enact meaningful laws that can bring autism insurance to all 50 states. We need to speak up so that the process to get the Medicaid waiver is not so complex and confusing to parents.
We need to speak up about special education and ensure that our children’s rights under IDEA are not violated. We need to speak up to stop bullying against people with autism. We need to speak up to bring more awareness to wandering. Too many of our children are dying.
About our Guest Author: Kpana Kpoto
I am wearing many hats these days. I am a special needs advocate, “Naavigator” (Parent Mentor) with the National Autism Association- NY Chapter, and co-founder of the Bronx Parents Autism Support Circle. I recently began writing autism blog posts on the award winning Web site Black and Married With Kids.
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