This post is by Lauren Casper a mother of two who blogs at www.laurencasper.com. Lauren's son Mareto is on the autism spectrum. Lauren wrote this post in honor of Light It Up Blue and World Autism Awareness Day.
In honor of World Autism Awareness Day, here are 5 things I wish everyone knew about autism...
5. Autism is a spectrum.
There’s a popular phrase in the autism community – “If you’ve met one person with autism you’ve met one person with autism.” Individuals with autism are as different from each other as the rest of us. Their struggles and successes will vary.
4. The term “high functioning” can be misleading.
My son is now considered to be toward the high end of the spectrum and we are so proud of all his hard work. To be clear, we were just as proud when he hung out on the lower end of the spectrum. But this fixation on the “high” and “low” end of the spectrum can actually cause more struggles for families seeking support. The assumption can be that my son doesn’t need many services or much accommodation, and that our family can function just like any other family. While it’s true that my son can now communicate verbally most of the time, has gained control over most of his self stimulation (stimming) behaviors, and recently transitioned from diapers to boxers he still struggles in some very basic and important areas. His sleeping and feeding issues are severe enough that they affect every day of his life and our life as a family. We can’t go to restaurants just yet because it’s too overwhelming. He still runs out of the house or away from me at open parks at times and these things cause me to lay awake at night with worry over his health and well being. Not understanding that high functioning ASD families struggle in ways that aren’t always obvious to the outside world can lead to a lack of understanding and support.
3. Individuals with autism are not unloving or lacking in emotion and empathy.
There are many children on the spectrum who recoil at the touch of another or reject hugs and physical affection. There are also many who crave and seek out hugs and snuggles. Many might seem unfeeling or uncaring when faced with anger or sadness in another, while others will show great concern. These aren’t evidences of their ability to love, rather its evidence of the different kinds of processing disorders individuals with autism deal with. My son is physically affectionate and craves deep pressure touch (like big bear hugs) because it makes his body feel in sync and relaxed. He sleeps with a weighted blanket and we hug or do big ball squishes throughout the day. But touch his head and it’s a whole other story. Shampooing my son is akin to torture in his mind. The same goes for emotion. Sometimes my son simply doesn’t know how to process the facial expressions or emotions coming at him from others so he retreats into himself to escape or figure it out. But he cares deeply and loves bigger than anyone I’ve ever met.
2. Most people with autism are not savants.
Many people hear “autism” and immediately think of the movie The Rain Man. They wonder what that person’s “thing” will be. It’s true that there are some individuals on the spectrum with photographic memories, an uncanny ability to remember stats or solve math problems, or an ability to read at an early age without being taught. However, the majority of individuals with autism are just like the rest of us in that they have varied interests and abilities. Whether or not they can memorize the phone book has nothing to do with what they have to offer this world. Like the rest of us, they have worth and value because of who they are not what they do.
1. Families of children with autism don’t want pity – we need compassion.
We fight hard and long for our children and most days it feels like nothing comes easy. We sit on the phone fighting with insurance companies for hours. We drive to and from therapies and spend our evenings emailing doctor’s, making new appointments, and researching new ways to help our children grow, learn, and develop. We have to prepare in advance for things like a trip to the dentist, the doctor, or even an outing to the store knowing that we might have to grab our bags and leave in a moment’s notice. We also have a front row seat to the love, joy, and rewards that come with being the parent of a child with autism. So we don’t want pity. We do need your compassion, though. When we can’t give a solid RSVP to the birthday party invite we need grace. When we have to leave abruptly we need your understanding. When we forget or are too tired to return your phone calls we need you to extend compassion and keep reaching out. We need your friendship and support. And when we need to sit and cry for an hour we need you to give us a hug, tell us you care, and maybe leave a casserole on our porch. ;)