1 in 88 Can’t Wait: Autism in Our Elections
Watch Darnell Carr-Newsum in our election video then read her blog about why this year’s election is important as she watches her daughter turn 18
By Darnell Carr-Newsum. Watch Darnell in our election video “1 in 88 Can’t Wait” and read her blog about why this year’s election is important to her as a mother.
In just a few short months, my youngest child, my darling daughter, Savannah will turn 18. When she was born, I had visions of her going off to college, perhaps even taking a year off to discover herself in Europe or working with other young people to foster world peace.
I was so delighted to have a daughter who I could go shopping with (and one day shopping for that perfect wedding dress) – a daughter I could share the lessons of life I had learned. I thought of how my life would be as an empty-nester – knowing even then that kids grow up so fast and then go off to find their own way in the world. But, when Savannah was three, I learned I would have to learn to celebrate this upcoming milestone in a totally different way – Savannah was diagnosed with autism spectrum disorder. In 1998, about 1 in 150 children were diagnosed on the spectrum – now it is like 1 in 88.
Chances are Savannah will not go to college, she will not get married and shopping for her can cause sensory overload. She may discover Europe but it will be on someone else’s terms, not hers. I don’t think I will ever understand what it is to be a true empty-nester as I can’t be completely sure that there will be appropriate available housing for my daughter while I try to tackle middle-age and retirement years.
I don’t know yet how Savannah will find her own way in this world. But, I can’t help wanting, needing things to happen for her. I want her to become a productive citizen of the world and be supported by her community and society as she struggles to communicate with others and share her gifts. I want her to be able to take a college literature course – even if she happens to be 30 years old and only then acquiring the reading skills to do so. I want her to live as independently as possible, being able to work at something where she can be appreciated and protected, and to develop a circle of support to sustain her when I am no longer on the planet.
But for this to happen, I need our national and local leaders to make autism a priority – I need our elected officials to understand the needs of an ever-growing population and work with communities and families to support these children who so quickly will be adults, still worthy of our help and our strength. I need our elected officials to believe that when my daughter turns 18, she has good reasons to celebrate her future.
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Yeah, we can’t wait for non-autistics to stop speaking on our behalf and let us use our own voices. We can’t wait for self-advocates to have a voice in the so-called “Autism Community (TM).” We can’t wait for people to stop making money off of people’s fear and ignorance. We just can’t wait.