The Coming Caregiving Crisis

May 2 2012 @ 11:42am

Michelle Cottle marks a "new, more complicated era" for parents of children with special needs:

That era is coming in part because many of the medical and social advances that have improved the lives of special-needs individuals have also increased the burden of caring for them. For instance, people with Down syndrome were once lucky to survive to age 30; today, the average lifespan is 55. This presents parents (and society more broadly) with the challenge of somehow providing for an adult child decades after their own deaths, a situation complicated by the fact that the Down population develops Alzheimer’s at a rate of 100 percent, typically in their 40s or 50s.

Then there is the 800-pound gorilla in the room: autism.

In late March, the Centers for Disease Control issued an estimate that 1 in 88 children now fall on the autism spectrum. While debate rages over the roots of the "epidemic," this swelling population is placing increasing strains on our health-care, education, and social-services systems. A study released last month put the annual cost of autism in the U.S. at $126 billion, more than triple what it was in 2006. The bulk of those expenses are for adult care. Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, calls the situation "a public-health emergency."

A parent of autism writes:

I have been fan of your writing for over ten years. I actually wrote to you a long time about my daughter and how I refused much of the prenatal testing offered at the time because I wanted to be her mother no matter what. You congratulated me on becoming a mother. And although I am sure you don't remember as you must get thousands of emails a year, it meant a great deal to me at the time. Like you I was raised Catholic and still have great faith in Christ, although finding my way has been difficult at times.

Life takes many curious turns, and ten years down the road, I am now the mother of two amazing and beautiful daughters, both on the autism spectrum. I read all the articles you included in the series on late-term abortion, and while I would never tell another woman what to do, I am thankful everyday for my girls, and I would not change them for the world. I am a teacher by profession (high school English) and I spend much of time trying to teach empathy through the stories of Atticus and Scout, Lennie and George, and poor sad Holden Caulfield. In addtion to advocating for students with special needs, I am an ally for our gay students, and I fully support gay marriage as a civil right. I have raised my girls without prejudice, and one of the sweetest things about autism is the way they accept people just as they are.

I have written a book about my girls which was published in March, and I was hoping to send it to you. Central to the book is rights of of people with "disabilities"(I hate that word) and the inherent sacredness and worth of every human life. In this scary age of genetic engineering, designer children and euthanasia/assisted suicide, the very existence of people seen as not living "complete" or "normal" lives is increasingly threatened. As the genes for certain things are discovered, there exists the potential to screen out all the blessed and beautiful variation in human expression: Asperger's, autism, Down's etc. There was an excellent piece in the London Times I used for my book that talks about screening out autism and potentially losing geniuses.

The book is called Parenting Girls on the Autism Spectrum: Overcoming the Challenges and Celebrating the Gifts. It was by Jessica Kingsley Publisher, a well-respected English publisher with a long history of offering books on autism by folks like Dr. Tony Attwood. In fact Dr. Attwood and developmental pediatrician, James Coplan, offered generous quotes for the back cover. And while I used my experiences with my girls as a starting point, the book is a solidly researched-based, resource book rather than just a personal narrative. Part of the book focuses specifically on the ways girls with autism deal with the stresses and stereotypes involved with being girls. And a good part of it focuses on the wonderful and refreshing way girls on the spectrum are true to themselves in a world that too often demolishes all that is wonderfully quirky in girls.

My two daughters are proof that people the world sees as disabled can do amazing things. Lizzie, my beautiful 15 year-old, was initially was diagnosed with PDD, but now would best be described as having Asperger's Syndrome. She is a musical fan and participates in her school's theatrical productions. My younger daughter Caroline is 12, and she has high-functioning autism. She has come so far through behavioral therapy, inclusive programming in school, lots of great experiences, and tons of love. Although Caroline still has autism, she is a fantastic speller, does long division, and plays the trumpet in her school band. I know that Caroline enriches the life of everyone who spends time with her.

This book is not about curing autism, but helping girls on the spectrum reach their full potential through education, patience, opportunity, and unconditional love. My book is not anti-vaccine, nor is it about biomedical interventions. It is about helping our children through education, love, and acceptance of who they are. Both of my girls are marvelous human beings, full of kindness, talents, and joy. I have learned much about life, love, and being fully alive from my daughters. I have never viewed them as deficient or ill, just wonderfully and uniquely themselves.

Buzz Bissinger's reflection on his special needs son here.