Why Minority Voices Matter in the Autism Community
By Kpana Kpoto on August 04, 2014
“What can the white special needs community do to help the brown special needs community?” I was asked this question at the BlogHer ’14 Special Needs Mini Con session in San Jose, CA. I had to pause when I heard it. I wasn't ready.
I explained in my response that in the brown special needs community we deal with several issues including lack of access to information and resources. I also brought up the stigma that we deal with regarding developmental disabilities, such as autism. None of this actually answered the question because honestly I did not know what to say. I am not really sure what the white special needs community can do for us brown people.
We are all raising our children with disabilities and like white parents we need the same things. The autism world is already saturated by white parents speaking out on panels (congressional and on the local level), at conferences, and in the media. Unless you are a Toni Braxton or a Holly Robinson Peete, it is rare that a minority perspective is sought out.
The disparity in the representation of minority families in the national conversation about autism is glaring. This disparity also extends to the representation of minorities with autism. If you stepped back and took it all in, you would think that there were no minorities on the autism spectrum.
Despite obvious flaws in the recent CDC study citing the prevalence of autism, it is still important to share its findings. The study revealed that 1 in 81 black children are on the autism spectrum, and that black children were less likely to be identified with autism than white children. It was also stated that black and Hispanic children who have autism were more likely to have an intellectual disability than white children. Do our voices matter? Of course they do.
My reason for blogging and being a staunch advocate for parents of children with special needs.
Do I need a white parent to give me access? Honestly, no. I am more of the mindset of creating my own, and if I can’t create my own, then I will fight for what I need for my son. Don’t see a way? Make a way!
When I found out that support groups were lacking in my borough of the Bronx, I co-founded one with two awesome moms. We have over 120 members and we are growing. I am not waiting for anyone to invite me to the table. I will bring my own table and my own picnic basket. I know many parents who feel the same.
As I looked around the room at the mini con, I was the only black parent. In fact, I could count the number of minorities on one hand and not even use all of my fingers. We were in a room of 20 plus parents. Is this a problem? Yes. How did I get to this conference? I won a giveaway. I would not have been able to attend otherwise, and there would have been no black parents represented in that room.
To my fellow minority parents, we have to continue to step up and advocate for our families. In the autism parent blogging world, there are very few of us brown autism parents blogging about our lives, so maybe the mini con reflected that. Still I believe that our stories deserve to be told. I encourage parents of ALL races to share and be a part of the Sailing Autistic Seas community.
Before I go, I want to shout out my fellow brown autism parent bloggers and link to their sites, so you can know we are out here. Please add your site in the comments, if I left you out:
Bay Area Mocha Autism Network
Diary of a Loving Mom
One Woman's Journey
My Journey with Josh
Confessions of an Asperger's Mom
One Step Back - Two Steps Forward
Autism and Three Little Bears
F.A.C.E. the Movement* (This mom is not a blogger. but she is doing great things for autism families in the D.C. Metro Area.)
How do you feel about the importance of all perspectives being represented in the autism community? Please share your thoughts in the comments.