What a remarkable journey – I had with autism. When my son was first diagnosed, I could not even say the word out-loud for six months. I went into denial, shame and stigma for a long time to the point of taking him to Wisconsin for a play ground and avoiding everyone I knew.
On April 2, 2013 – I was able to say my son has autism without shame, hesitation and reservation at the United Nations World Autism Awareness Day Event (WAAD) in New York. This should give some hope to any Somali mom that is struggling with coming from the denial stage. All children are a gift from God and we should take the stigma and shame from all mental health conditions in Somalia and worldwide.
I must say, I was extremely nervous when I was invited to speak at the United Nations World Autism day in 2013 – even more than when I was invited by President Obama’s administration to the 2011 White House Autism Conference Event.
I knew there would be other countries listening and I had to be diplomatic which is not my forte. I think I called the U.N representative a million times because I was so nervous.
The day started with breakfast and conversation with my good friend from the New York Times who knew me when it was very difficult to admit my son’s autism. There were three panels – morning panel, noon panel and afternoon panel which is the one I spoke. First, we heard a message from U.N Secretary General Ban Ki-Moon (from South Korea) to the audience by his wife. Everyone spoke about raising more autism awareness and changing that awareness to action. Many said we need to have early intervention by multidisciplinary team in a manner that is based on research, culturally sensitive and is economically feasible. Some people spoke about the cost of early intervention in some countries whereby the cost in one month is more than parents make in a year.
Some of my favorite lines were about the racial, economic and ethnic disparities for autism children around the Globe, how to be the squeaky wheel advocate for your child, assuring more inclusion in schools and all community settings for all people with autism and not using the terms low or high functioning because there are many autistic individuals who are nonverbal, but are highly articulate. The lack of verbal communication does not correlate with the cognitive functioning of the person, nor does it mean that person cannot communicate via other means such as sign, devices or written word. I agree with this 100% and Neal Katz was the perfect example. This nonverbal young man was articulate, charming and funny who leads a normal life.
I was glad that one of the speakers actress Holly Robinson-Peete from Panel one who is an African American spoke about the persistent racial and ethnic disparity in services and early intervention.
I hope other minority autism parents such as D.L. Hughley, Toni Braxton and Tisha Campbell will do the same given that their voices are powerful and can change disparity policies for minority children with autism. One example is assuring equal early intervention coverage for both private and public insurance at the same-time in all of the states or nationally.
I suggested few things to member nations and internationally;
1. To establish Autism Professionals without Borders (similar to the Doctors without Borders) whereby SLP, OT, Behavior Therapist, Educators and Psychologist from developed nations can either volunteer or intern in developing nations.
2. For developed nations or a Philanthropist to start Global Autism Website which will have United Nations member Nations and have autism signs, symptoms and specific early intervention strategies for parents, family, caregivers and professionals around the world to utilize via the internet.
In sum, I would like to thank everyone at the United Nations that made this day possible, specifically Jacqueline Aidenbaum who was behind establishing U.N World Autism Day resolution (62/139) sponsored by Qatar that passed at the U.N years ago unanimously.
Idil – Somali Autism Mom