Alright – so, as Sen. Hoffman from Minnesota was trying to silence me in his little state committee, I was asked to speak at the federal level about autism. God does work in mysterious ways. When a tiny door like Hoffman’s closes, God opens a huge window like this.
Here is my written testimony. This is held by NIH and will be via zoom – phew as I would not want to fly to DC. It should be broadcasted on NIH’s website.
Idil Abdull – Written Comments
Adults with autism & Nonverbal/Minimally Speaking Individuals with autism
Federal Interagency Autism Coordinating Committee (IACC)
Dr. Gordon – IACC Chair and Director of the National Institute of Mental Health
Dr. Susan Daniels – Director Office of Autism Research Coordination, Executive Secretary of IACC, and Acting National Autism Coordinator, NIMH
April 4th, 2023
Dear Mr. Chair and Members, my name is Idil Abdull; I am a Somali Autism Mom and retiring advocate. First, I want to thank Dr. Daniels for her support and guidance in the Somali autism community in Minnesota as well as all autism families across the nation.
I was lucky enough to be part of IACC almost a decade ago now, how time flies. We made a lot of progress back then and you all on the current committee have made even more progress. However, there are two areas that I believe we still need more work and support.
Let me start with adult services. My son is now twenty years old, he will be twenty-one in July of this year. There are almost no services for adults with autism in Minnesota and nationwide. Our children grow and become adults, but we as a nation are not ready for them. The system is simply not set up for adults with autism from employment to housing, to safety, and in between. One of my biggest worries is who will care for my son when I am no longer here.
I want to ask IACC members, particularly the federal agencies that oversee adult services to concentrate more on not just research, but on services and support for adults with autism. They will need housing that is person-centered and culturally responsive, and employment that is fulfilling and rewarding. They will also need to be safe in their communities including with law enforcement. We must make sure adults with autism are able to live and work safely in their communities with dignity and respect.
My second request is about the ability to communicate. As you may have heard, Somalis are an oral society. Sadly, most of our children, including my son, have nonverbal autism. In other words, autism is silencing a nation of poets who are known for their oral communication. I thank Dr. Kasari at UCLA and Dr. Helen at Boston University. We need more research into this area, particularly in teaching our kids the ability to communicate from their hearts and minds via spelling. I think PECS is fine, but those are pictures and do not give our kids the ability to communicate their true needs and wants. It is a limited system.
I ask IACC to raise awareness of the spell to communicate system, to have insurance companies and Medicaid coverage, and to ensure we are giving every individual with autism the opportunity to be able to tell and say what they want, what they need, what they are thinking and tell us their dreams.
I would give every organ in my body for my son to be able to speak orally. It is my hope that one day he will tell me his thoughts, wants, and needs. I would love to ask him and have him answer me why he likes to listen to 70’s music such as the song – ooh child, things are gonna get easier when we are in the car and Bette Midler when we are traveling out of state. You see Mr. Chair and Members, individuals with nonverbal autism are smart, funny, thoughtful, and want to live a happy, healthy, and safe life just like all of us do. I ask IACC to tackle these incredibly important issues.
With Gratitude
Idil Abdull – Somali Autism Mom & Advocate
The above words do not reflect any candidate, agency, or committee.
Idil Abdull – Somali Autism Mom