Autism: Not a Fate Worse than Death

In 2009, Jenny McCarthy said,

“If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f___ing measles.”

As I write, over 100 people have been diagnosed with measles, thanks to over a decade of discredited reports and generalized fears linking autism and vaccines. The reason that kids are very sick from a preventable illness are because some parents are afraid that living a life like mine, my son’s, and my family’s is worse than the threat of deadly diseases. If you are a parent who thinks you’re being put in a difficult position of choosing between two scary risks for your child, I need to tell you this: autism is not the end of the world. It is not a fate worse than death. Vaccines don’t cause autism, and autism is not something to be feared.

I get your fears about chemicals and toxins. My autistic child takes his lunch to school in stainless steel containers so that I don’t have to fear chemicals from plastic leaching into his food. His lunch is PB&J on homemade bread, because I don’t want to buy the store-bought bread with high-fructose corn syrup. I embraced extended breastfeeding, babywearing, cloth diapers, and homemade baby food. I get that the natural, organic lifestyle is best for our kids. But I had no hesitation about vaccinating my kids, and I would do it again today. I have an autistic child, who was born autistic and lovable and amazing, and I would never stand in line for the f______ measles.

Don’t just take my word for it. Please read these important posts including the perspective from autistic adults, who rightly don’t appreciate when others make their existence out to be a worst case scenario.

Vaccines Don’t Cause Autism, But That’s Not the Point. Stop Being Ableist

I’m Autistic, And Believe Me, It’s A Lot Better Than Measles

Everything I Need to Know about the Social Model of Disability I Learned from Reading Little House on the Prairie

When I first started learning about autism and W’s challenges, I read a lot of reasonable sounding information about the deficits that characterize autism and the help that my child would need. In the early days, I considered W’s struggles to be “behavior problems” to be corrected. After all, he was a child freaking out at school and acting in ways that the other children didn’t, distressing his teachers and classmates along the way. (I had a steep learning curve ahead of me to understand that anxiety and sensory issues were the root of his problems, not “behavior.”I assumed that the problems resided in W and, once he was diagnosed as autistic, everything I read confirmed this. I didn’t know any better.

A few months after W’s autism diagnosis, I first came across the ideas of the Medical Model of Disability and the Social Model of Disability. The Medical Model characterizes the way autism is depicted by just about everyone in our society today. It focuses on the deficits in the disabled individual that should be treated or fixed. When W was diagnosed, I was immediately referred to Autism Speaks’ 100 Day Kit, which is the perfect example of the Medical Model, highlighting all the symptoms of autism and the therapies that are necessary to correct them. In contrast, the Social Model locates the deficits in society, rather than disabled people, and calls for changes in society, as well as accommodations for the individual, so that the individual is able to access more opportunities. In the Social Model, we build wheelchair ramps rather than expecting people with mobility issues to just learn how to take the stairs. The Medical Model would say that my son is disabled by autism. The Social Model would say that my son is disabled by society.

Right around the time I first heard of the Social Model of Disability, I was also working my way through reading the Little House series by Laura Ingalls Wilder with M. I remember reading a description in one of the books of Laura going into town with Pa, and how anxious she was from the crowds and people. Of course, this little pioneer town probably had 100 people, but Laura was nevertheless nervous because her family spent most of their time out on their homestead, with few outings besides church and the one-room school house. Laura did not depict her anxiety in town as pathological or a problem to be solved; she was a country girl more comfortable in quiet places, away from crowds of people.

The more I considered pioneer life in 19th century America, the more I understood how setting makes a difference for when someone is disabled. Would W have been disabled in the same way had he been born in 1875 in Dakota Territory? In a society without large crowds, amplified noise, fluorescent lights, or groups of screaming preschoolers running around in echoing gymnasiums, would his sensory issues have caused him as much anxiety? In a culture where children had lots of physical work and activity, started school at a later age and often didn’t attend for long periods of time (depending on weather, farm work, etc.), had opportunities to learn hands-on skills, and attended highly-disciplined one-room schoolhouses where students worked quietly and independently at their desks, would school have been such a source of stress? I’m not saying that pioneer life would have been ideal, but as a thought experiment, I understood much better how context matters when it comes to disability. W will always be autistic, but by changing the environment and the expectations of people around him, maybe autism wouldn’t have to be as disabling as it is for him now.

Before W started preschool at 4 1/2, he really didn’t have any major problems at home. I never felt like anything was “wrong” with him. Clearly, there was something about school that caused his difficulties. After all, W wasn’t disabled until he went to preschool and was forced to cope with sensory overload and anxiety among the chaos of 4 year-olds. Our simple life that he led at home was manageable for him and he could cope with the demands extremely well.

My thinking and the questions I asked began to change. Instead of, “How can we stop W’s problem behaviors at school?”, I began to ask, “What can we do or change to help W feel safe at school, so that he can succeed there as well as he does at home?”