“Does your sister have autism?”
My sister could not believe what she heard. Apparently, this “friend” had seen me running on the track.
To be fair, to see me running on the track is a strange sight. My torso swings in and out, as I inhale, exhale. I clutch my side, hoping the pressure will ease the pain. I jog in 30-second spurts, then slow up to rest. My legs move slowly, so slowly that as I finish my first lap, the runners next to me breeze through their second. Very soon, they will be spectators from the sidelines. I will cross the finish line alone. But I keep pushing. I have been pushing, every minute, every day, since the day I was born.
For my mom, that day came too soon. Her November baby showed up at the end of August. It took an emergency C-section to bring her little bundle of joy into the world.
Little is the operative word. I weighed two pounds, 11 ounces.
The next two months were a series of late nights, frequent blood tests, and daily weigh-ins. I was attached to a respirator and lived in a germ-proof incubator. I was an undercooked organism, not ready to face the world.
At last in October, I weighed a whopping five pounds—enough to go home. Mommy, daddy and baby could finally make three, and it seemed the worst was behind us.
Even though I soon grew to be the same size as—and, indeed, often bigger than—my playgroup buddies, I slowly began missing milestones. I took twice as long to learn to roll over, crawl, and finally—at two-and-a-half—walk. After a series of tests, we discovered I was more than “a late bloomer.”
I had cerebral palsy.
In freshman biology, we learn that the brain is our body’s supercomputer. It seems that when I came out early, my brain lost some oxygen.
So it is technically brain damage—that’s what any disability (including autism) is. The type of disability you have depends on where the brain damage is, and how badly it has been damaged.
At the time, these were just two more of the unanswered questions my parents had. What they did know was that they were going to love me—no matter what.
We had our work cut out for us.
Through therapy, we were better able to grapple with my capabilities. I like to categorize them three ways: mobile (walking, skiing, and the dreaded mile run), fine motor (smaller things like brushing my hair, buttoning my jacket, or cutting with a pair of scissors) and visual-perceptual (seeing stairs, interpreting graphs, and recognizing specific faces.)
Though that seems like a big burden (and, with the minutiae of daily life, sometimes it can be) I soon realized I was very lucky. Once I learned to walk, I could do it without a wheelchair, walker or cane. I had no problems speaking (except for the fact that sometimes it would behoove me to shut up). Most importantly, there was nothing wrong with my mind or my behavior. I was cognizant. I was capable.
I was going to be fine.
Cerebral palsy (CP) is a spectrum disorder; you can have it very mildly (like I do), or be nonverbal, wheelchair-bound, and dependent on others for your whole life.
And as it happens, autism works exactly the same way. Severely autistic people may be unable to communicate with those around them, but others (like Temple Grandin, the industrial designer portrayed by Claire Danes in a 2010 HBO movie) are high-functioning. The difference is that my disability is physical. Autism is behavioral.
I never lose sight of how lucky I am to have been born in 1998. 100, or even 50 years before, my parents would not have had many options for me besides confinement in an institution. Thanks to the Individuals with Disabilities Education Act (IDEA) and similar legislation, millions of disabled Americans can transcend their limitations in public school and beyond.
But school was (correction: is) still hard. I do algebra on customized graph paper, type notes on a computer, and take standardized tests on paper so big I have to put two desks together to make it (kind of) fit. When I was younger, I was pulled out of class regularly for extra practice with letters and numbers, and I worked with a fantastic P.E. coach to learn to throw a ball.
School can also be frustrating. Sometimes, no matter how hard I try, my brain can’t process what’s on the page. If I try really, really hard, I can make my handwriting look like what other people would do “in a rush,” but my hands get tired.
And as much as this very article would act to the contrary, I don’t want any special treatment. It’s embarrassing to not be able to construct a 3D model like other chemistry kids, and no matter how often I do it, raising my hand and in effect saying, “I can’t do this,” always seems like a cop-out. I don’t want anyone’s pity. I’m not even totally comfortable writing these words. I don’t want to fly the flag for those with CP or disabilities in general. I hate that in many ways, my sister, who is two years my junior, has had to become the big sister.
And most of all, I hate that she was subject to someone’s ignorance that day on the track.
I don’t blame that girl—or anyone, for that matter—for such ignorance. I know that they don’t realize that calling someone retarded has deeper implications than they can even imagine. I know that if they knew me, my disability would be the farthest thing from their minds.
I also know that my life—our lives—are about the small things. My parents and I will rejoice over a successfully-tied shoe, neatly cut piece of fruit, or an especially pretty signature. My doctors, therapists, and teachers are quick to notice these little victories too.
Calling someone retarded or “special ed” is no small thing.
And though it may seem small, getting to know someone who is different from you is a big deal. You may learn that the two of you are not so different after all.
And you will make them feel like they just crossed the finish line.
6 Comments
I know what it’s like to be special. I’m so sorry. No kid should go through bullying. I feel the same when when people know my life story I don’t want their pity. Look at me now I’m a strong emotion wise person and I don’t need their pity. This is very brave of you to say this. I’m scared in general to show anything let alone something personal. Top hats to you : P I like your writers voice.
*be in special Ed
I came across this on the LATimes website and enjoyed reading it. Kudos to you for being so willing to write this, even if you weren’t completely comfortable being so open, especially as a teenager. It’s one thing for an adult to write an article like this, another thing for someone in high school, where a kid can get ridiculed for being the slightest bit different than mainstream.
There were a few things that caught my eye when you mentioned autism that I felt the need to speak up about. Please don’t take this the wrong way or feel that I’m being hyper critical. As an autistic woman (I was diagnosed with Asperger’s Syndrome which is now a part of Autism Spectrum Disorder) I wanted to clear up a few misconceptions.
First, autism isn’t brain damage. Not all disabilities are caused by brain damage – paralysis for instance can result from a spinal cord injury. I’m not sure if you are referring more to prenatal and perinatal disabilities (a few weeks before birth to four weeks after birth) – things some folks might refer to as birth defects, or to disabilities in general. For instance COPD can be a disability for some who have it, and it can be caused by irritation to the lungs (smoke, pollution, etc.). My brain is autistic. I was born that way.
When it comes to autism, some folks on the autism spectrum don’t consider it a disability, but instead see their autistic brains as a different type of brain, albeit a minority variety in a neurotypical society. Some folks embrace the concept of neurodiversity. Some folks feel their autism is a disability but wouldn’t want to change it as it’s a part of their identity. Some folks see autism as a public health crisis which destroys families and takes children away from their parents. They search for a cure. A person could spend days reading forums and message boards debating the topic. What’s important though is that vaccines do NOT cause autism.
Second, autism is not behavioral. It is a neurodevelopmental disorder. Sure, there are certain ‘behaviors’ that people associate with autism. ‘Stimming’, such as rocking or hand flapping, can be called a ‘behavior’, but it is not without purpose – it is an attempt by an individual to help regulate themselves and their non-typical nervous system. A ‘meltdown’, which some folks might mistake for a major temper tantrum if they saw it in a child, is not some sort of acting out behavior, it is something can occur when someone experiences such overload – for some people the sound of a vacuum cleaner hurts their ears like fingers on a chalkboard. Some people have tactile sensory issues and the scratching of a tag on the back of a t-shirt makes their skin crawl. For others, a simple smell like mint could cause them to feel severe nausea.
Third, many people in the autism community are trying to get rid of the notion of ‘high functioning’ and ‘low functioning’. Maybe it helps get additional services on an IEP, but just because a person with an Autism Spectrim Disorder is non verbal doesn’t mean they are low functioning. Many people with autism use non-speech methods of communication. And just because a person can use verbal speech does not mean that they struggle less than someone who uses a Picture Exchange Communication System (PECS).
Lastly, calling someone autistic is very different from calling them retarded. While Person First Language has been considered proper by many for awhile (a person with autism instead of an autistic person), many in the autism community find PFL to be offensive. They prefer being called autistic – autism isn’t something they just have, it is an essential part of who they are. The example “I am a woman” as opposed to being “with womanism” is something I’ve seen on memes. It gets really confusing. In school and when working with people I was taught and reminded to use PFL and then I start exploring the autism community and find out that what I was taught is wrong? These days I tend to try and alternate between ‘autistic person’ and ‘someone with autism’ so as to not insult or isolate those with differing opinions.
Perhaps the girl from the track simply observed physical characteristics that reminded her of physical characteristics of an autistic friend of hers (one who preferred to be called autistic as opposed to ‘someone with autism’) and was just curious if the person she was seeing also had autism. Maybe she thought ‘hey if that person has autism I won’t think they are being rude if they don’t make eye contact’. I would have rather someone say I had aspergers or was autistic in gym class than being made fun of for being slow or my atypical gait when I ran, or my inability to catch a ball. At the same time I wouldn’t have wanted to be first picked for a team out of sympathy, or because the team leader felt it made them look like a good person for picking the kid with a disability and therefore boost their own self esteem. Fortunately in college I got to take ‘social dance’ as a physical education requirement – even athletes struggled with the waltz, so I felt less awkward. And as an adult, I never have to run a mile. Rarely do I have to catch anything being thrown to me. And when I have to do math I use my smarphone.
Your post mentions not wanting pity. I don’t want pity either, but I am okay with others acknowledging that it can be a struggle for an autistic person (me) to navigate a neurotypical world. Instead of “oh you can’t do this, that’s okay” I want to hear “what accommodations do you need so that you can do this”.
My response ended up being a lot longer than I intended. I do apologize. ;-) Once again, my intent is not to criticize or be mean or snarky. Just wanted to give my autistic perspective.
Please don’t apologize for overlength or snark; there is none of either. Thank you for pointing out my inaccuracies, which, as a journalist (albeit a budding one) I will try to avoid in the future. I have done some nominal research on the autistic brain (having come into contact with several autistic people in my years of therapy and specified schoolings) From listening to and reading the works of Temple Grandin, I understood that autistic people make up some of the most uniquely-minded and plain ole brilliant people ever, and, moreover, do not see their genetic makeup (if it can be so called) as a handicap. The vaccine issue is an important one; that’s one specific journalistic error that, despite multiple studies has never been proven.
As I understand it, all behaviors are an attempt by organisms–for here I include both homo sapiens and animals–to grapple with the world around them. So I understand that people feel slighted by the nomenclature of high vs. low functioning or retarded vs. autistic (a point on that last confusion is that you aren’t the first person to point that out to me.) And unlike the previous errors I have made, I knew full well of the inconsistency between “retarded” vs. autism. My point was and is that people are generally ignorant of the way disabled people live our lives. I knew that the only way to shed light on the subject was to express myself the best way I knew how. It is only through this kind of dialogue that any semblance of understanding can be reached–as I hope it will be, among all peoples, all creeds, and all nations.
Thank you for caring.
Thank you for writing this article! One of the biggest things we can do, is to find language (and words) that are helpful for discussing difficult things-I think the reaction above was purely because of the words “my sister could not believe what she heard..” which comes across as something negative regarding autism.
And I agree totally that “special ed” is not helpful-nor “Intellectual Disability” What words can we use to better describe those situations? (any thoughts will be appreciated)
How to speak in a purely objective way about situations and conditions is something noble to work on, I wish more people would-thank you again for all of your efforts!
Awesome article. Keep up the great writing and thought provoking analysis. Enjoyed it.