Frustrated by tepid mainstream advocacy, an outspoken mom says change will only come if we bust the taboos around severe autism.
The author with her son, D.
By Tonya W
My son D has autism, is 21 years old, and now living in an inappropriate group home. I worry about him every day because he has limited speech and I know that the management and staff have no training working with my son's autism.
He lives in a group home because I can't manage my son when he becomes aggressive, which happens with and without triggers. Meaning he loves Kit Kats. He loves McDonald's 10-piece chicken nuggets with a large fries and Coke. When he says in his own way, ‘Donald's’ or ‘Kit Kit,’ those items better appear quickly or if not here comes the Hulk. This can lead to destruction of property. He can attack staff with trying to bite fingers.
Then there is the puzzle of him doing the same thing out of nowhere, it just shows up. My son is on meds just for these aggressive behaviors. However, I have witnessed a miracle D getting angry and he understood and captured it and literally took control of it and it went away; he is truly amazing.
I want to say thank you to NCSA for reaching out and talking about our kids and young adults who can have aggressive behaviors with or without triggers. This is the taboo about autism that no other organization wants to talk about.
This taboo is why there are no appropriate resources and residential placements, or staff. Or, hospitals that are knowledgeable about autism.
Our loved ones deserve a caring, very patient, appropriate staff with training from an accredited college for special education, specifically in autism. There should be a special office or department just for autism in all states and counties. There should be facilities built for our loved ones to live, made specifically for autism.
My son's autism along with your loved ones' autism is a pandemic ignored by organizations like Autism Speaks, The Arc, and Autism Society, to name a few. This recognition is needed in all of the United States. We need appropriate resources to be prepared for the 21 year-olds that have or will be transitioning out of school.
This also includes the young children and teenagers with autism. Many simply cannot live at home because of the severe autism. Sound the Congress alarms and let's get what is needed our adults, teenagers, and children with autism to have safe, happy, productive long-term care NOW.
Tonya W is the mother of a young man with severe autism. She lives in Maryland.
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