See the Person, Not the Disability

 

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Imagine, if you will, an expressionless world. Everyone’s face looks the same. You struggle not only to tell people apart, but also to determine whether they are happy, sad, frustrated, angry, or overjoyed.

Now, imagine a world filled with unbearable noise. Every ticking clock, every pencil moving across paper, every tap, knock, bump, giggle, and ambient noise is amplified and audible. It’s a world that causes you pain and anguish, but the volume can never be adjusted.

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Imagine feeling like a foreigner in a strange land even though you are not in a foreign country. You do not understand very basic social protocol or taboos and find yourself constantly committing faux pas. Even though you are a smart, capable, caring person, people do not always see you as such because you lack the ability to adapt and present yourself in a way that resonates with those around you.

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Imagine feeling lonely and isolated, even when you are surrounded by others.

And imagine being the embodiment of a cultural stereotype. You can’t disclose your condition without at least one person asking you to calculate a random, complicated math problem with the expectation that you will, like a human calculator, have the answer instantaneously. You must either be Rain Man or Sheldon Cooper.

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This and more is the world of Autism Spectrum Disorder—a condition that affects approximately 1 in 68 Americans between the ages of 3 and 17.

Most people are familiar with the diagnostic criteria for ASD as defined in the DSM-5: Ongoing social problems that include difficulty communicating and interacting with others. Repetitive behaviors as well as limited interests or activities Symptoms that typically are recognized in the first two years of life. Symptoms that hurt the individual’s ability to function socially, at school or work, or other areas of life

The common thread, however, among all the families who participated in our survey concerning autism was the idea that “if you have met one person with autism, you have met one person with autism.”

Because it is a spectrum disorder, the traits common to all people with autism vary in severity and in pervasiveness. Some autists are non-verbal while others merely struggle to find appropriate words. Some have the need to constantly stim (perform repetitive behaviors) while others stim because of an anxiety-inducing situation. Some struggle with written expression while others struggle with math while others have little to no academic struggles. All autists struggle with social interaction; however, some can almost completely mask their struggles while others cannot function within a social setting at all. There is no singular face of autism. As one mom put it, “[My son] isn’t a savant, nor is he spinning in circles all day” [as many would assume]. However, he struggles inwardly and “needs little distraction and written directions to stay on task.”

Another common thread for people on the spectrum and their families is isolation. One young person with autism reported, “I just don’t do normal.’ I do not understand why people my age like the things they do. I do not understand why they find the things I like so off-putting. I am wired in such a way that I must be myself. I cannot wear a social mask, and in the world of teen social survival, that does not always play out well. You have to learn to be comfortable in your own skin much sooner in life than most people get there, which I suppose is a good thing, but it can be a lonely and confusing thing too.”

Families who manage their autistic loved one’s sensory sensitivities in a very loud, media-driven culture can also feel isolated. One mom surveyed confirmed, “I cannot take my son to the grocery store because fluorescent lighting triggers sensory overload. He cannot adapt to the noises at restaurants, especially if loud music is playing or a television is blaring. Even church attendance can be a struggle as most church services now include bright lights and live music. The vibrations from a drum set can send him into overload. It is simply easier to stay home some weeks.”

Another added, “I have much more of an understanding of what it means to be homebound. It can be a very lonely and isolated life. Your priorities change, and you continually have to make lemonade from lemons. And at the same time, what is perceived to be lemons generally becomes a sweet plum because what you thought were lemons were actually the world’s sweetest fruit.

How Can We Help

We asked the participants in our survey what others can do to love them as ourselves. Even though I am a mom of autism, I found many answers eye-opening:

Kindly let my son know when he is speaking too loudly, help him adjust to social situations, and be patient. Remember that he lacks an intuitive ability to recognize non-verbal cues, and you are not being rude to give him a little social coaching. You are being kind!”

“Please don’t jump to conclusions about his/her behavior because he or she is not operating from a neurotypical position with a natural understanding of how things are. Most parents of autism are parenting overtime—taking their child to social training sessions, working with a team of professionals, implementing therapies at home. Please remember that their disorder affects their behavior. It is just.so.hard..

I would love to see our culture consistently stand up to teasing. I have witnessed some brazen teasing of my child that has gone unchecked. I can’t help but imagine what would happen if the person who teased my child for being ‘weird’ teased a child in a wheelchair for not being able to walk.”

“Know that we are all traveling through life with autism in our own way, carrying a lot of ‘what-ifs’ and fears about the future’. It’s hard. It’s frustrating. It’s scary. Our kids reach milestones late or not at all. We mourn a lot. The struggle to trust God with our child’s future is amplified. Keeping a positive attitude and not feeling the sting of what could have been is a daily battle.”

In Their Shoes

To better understand what sensory overload feels like, please watch this video and discuss what it would be like to feel that way at home, at school, at church, and while out and about in the community:

https://vimeo.com/52193530

Most people with autism experience fine and gross motor delays and comorbid conditions like dyspraxia that affect their ability to do daily tasks like write, tie their shoes, and use utensils. Try the following:

Put on large work gloves. Now pick up your pencil and write a sentence. Try tying your shoes. Eat dinner and use utensils.

Discuss how it felt not to be able to get your hands to do what you wanted them to do. What if you had to take notes at school/co-op that way? What if you had to groom yourself and dress with the gloves on? How many aspects of life would be so much harder because of those gloves?

Play a game of facial expressions.

Have your child (or a sibling or friend) guess your emotion based on your facial expression.

After you do this a few times correctly, then give the wrong facial expression for your emotion or give a blank stare for each emotion.

What if this were the way you saw things all the time? How would you know how others are reacting to you? Could you tell if you were annoying them? Making them happy? Causing them angst?

Discuss how this would affect your ability to make friends and interact with others.

Raising Awareness

Light It UP Blue on April 2! Wear blue on April 2, 2018 to show your support for people with autism and their families.

 

 

 

 

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