Sunday writing: An ASD essay found

In working on getting some poems together for my publisher, I found the following essay I wrote several years ago and thought to share it, here. In my opinion, we don’t look closely enough at the upside of Autism. I’m sad I haven’t taken the time to work more on this topic, but for what the old writing is worth, here it is. I welcome your feedback, and of course the names have been changed to protect the innocent!

The Upside of Autism

By Kate Cumiskey

Autism, or Autism Spectrum Disorder (ASD), is a hot topic and getting hotter all the time. While much is talked about concerning the causes—largely unknown—, treatments, and rising incidence of ASD, we hardly ever read or hear about the good stuff. But it bears discussion.

People without ASD are called, in lingo of the world of Autism, “neurotypicals” or “NTs.” I’ve never met a single NT who would trade in their relationship with a person with ASD. Why? Because—like each unique person on the planet— people with ASD have a rich variety of skills, talents, and ideas to contribute. Here are some characteristics of people with ASD which can benefit all of us NTs out there, but it is always good to keep in mind the caveat that when you’ve met one person with ASD, you’ve met one person with ASD:

Restricted interests

All people with ASD have what clinicians call “restricted interests.” While this may mean a fascination with a particular fictional television character, an encyclopedic knowledge of the war of 1812, an ear tuned to different tones of musical instruments, or any other topic, what many people don’t realize is they are just better than NTs can ever get at that topic! One man who was fascinated with old tube amplifiers for blues guitarists decided he could build new ones better, from scratch, and did. To the tune of even milling the lumber for the cases and soldering his own circuit boards. Another young man became so good at a particular video game that he went straight from high school to the world competition circuit, and is earning a very comfortable living. Dr. Temple Grandin, subject of the movie The Temple Grandin Story, has made priceless contributions to the field of animal husbandry due to her unique ability to construct cow-friendly holding pens and slaughter houses. All because of her fascination with cows! There is an old joke in the ASD world which goes: NASA is the biggest sheltered workshop for Autism. Like most jokes, it depends on an element of truth; many pioneers in the fields of high science and math are people on the Spectrum. And just think of the personal benefits in a love relationship when pleasing the NT is a restricted interests. We’ll let your imagination take it from there.

Rule Following

People with ASD tend to be rule followers, which can be a very good thing depending on the rules. In other words, if you are a teacher, parent, or employer dealing with someone on the Spectrum, it is a very good idea to make certain that rules are clear, specific, and make sense. For example, here is a badly written rule for school: “Show respect to yourself and others.” When we are talking about ASD, it oftentimes points us in the direction of things which don’t work. The above rule may seem like a good one, and of course it is something which we all want everyone to follow, but it is neither clear nor measurable. In many cultures it is respectful when dealing with an authority figure to keep the eyes downcast; in others, this shows disrespect. Fortunately we here in the U.S. have a very diverse culture. So, we need to make certain we respect all the backgrounds represented in the average classroom. A solution: have classroom rules which begin with, “Show respect for self and others by:” then list specific behaviors which give your perception of respectful behavior, like, “raise a hand and wait for the teacher to call your name before speaking.” One caution, here: if you make a rule—be it for bedtime, recess time, or how to cross the street—make sure you are able to stick to it yourself, or your person with ASD will certainly let you know when you don’t! A good home rule is, “listen and do” when it comes to the authority figure in the home. This is clear—when mom is speaking to you, listen. When she tells you what to do, do it. This sort of clear communication benefits not only the person with ASD, but all us NTs as well. After all, good communication is good communication.

            Honesty & loyalty

When a person with ASD tells you something, you’d better believe in their perception, it is true. It is very difficult for a person with ASD to lie. That doesn’t mean their point of view is always the only one. But, usually in social situations they are working so hard to fit in and to understand what ASD specialists call the “hidden curriculum”—all the nonverbal communication, and the verbal stuff such as irony, sarcasm, and metaphor which is unclear for them— that making stuff up just isn’t in their skill set. This can be a double-edged social sword. But, dealing with it is largely a matter of understanding on the part of NTs. If you really want to know if that dress makes you look fat, ask somebody on the Spectrum. If you don’t, don’t ask. One fourth grade boy with ASD seemed to get a stomachache every time there was an upcoming written assignment, particularly in math which was his most difficult subject. One day, he told the teacher he had to go to the restroom right away, and she thought he was trying to get out of a test, so she told him no. He promptly sat down and vomited at his desk. After that, whenever Joey had to go to the restroom right away, the teacher knew he was telling the truth.

The wife of a man with ASD got embarrassed and went to meet with her minister because every time he asked a question in church, her husband answered back.

“Doesn’t it bother you when John answers you from the congregation?” she asked.

“Are you kidding” the minister replied, “I love it! I know that somebody out there is paying attention, and I also know when I’ve lost that attention if John says, hey, you lost us ten minutes ago, go back to what you were saying about…whatever. John tells me the truth. That’s a good thing.”

So again, when NTs are prepared for what they are getting into in a relationship with someone on the Spectrum, and take care with communication, an open and honest bond can develop which often surpasses relationships between two NTs, surviving when others fail.

Loyalty is another quality of people with ASD. One man’s NT wife was first suspicious, then relieved when her husband told her he didn’t want to go to the beach because of all the women in bikinis, which he found revolting.

“I don’t believe you,” the wife said, “you buy me bikinis all the time and say you love the way I look in one! How can you think I look great in my bikini and be disgusted with women who are younger and look better in them than I do? You must not be telling me the truth!”

“Yes I am. I have a wife I love to look at. I don’t need to look at other women and for me they don’t exist in that sexy capacity. They are just other people I don’t want to see undressed, just like I don’t want to look at other men in bikinis! I’ve caught my limit and I am happy with you.”

That sort of loyalty can come in very handy over the long term in a love relationship, and just like the way people with ASD often take interests to a high level, they also can be terrific spouses and parents.

Paving the way for others

Living with somebody with a disability, particularly an invisible one like Autism, can help others in clarifying their own lives and setting realistic, good priorities. While there is often a feeling of “crisis mode” in a home where ASD is present, it also often forces stakeholders in the family to look at individual strengths and needs and make clear decisions on what stays and what goes the way of the dinosaur. Many ASD moms are just happy to get dressed in the morning, and don’t have time for things like the spa, the hairdresser, makeup and such. While they may miss those opportunities, they don’t get lured into the “focus on me” culture which lines the pockets of those vanity-driven industries.

Here is an example from the life one woman about dealing with a toddler on the Spectrum in public, even before she had a diagnosis. This was a mom of three, expecting her fourth child. Her oldest child was in school, and she took her three-year-old son and two-year-old daughter to the supermarket one morning. Her husband was a work, and they already had enough issues with the little girl that it took two of them together to venture into public places due to meltdowns, which are temper tantrums which happen when a person with ASD feels disregulated. But, she needed toilet paper and milk and decided to pick up a few more things.

All was well until the family reached the point in line—and of course there was only one check-out lane open, and the line was long—when the little girl had a sudden screaming fit. Her brother, in the basket with the groceries, quietly took advantage of his mother’s diverted attention to load every candy bar in the rack into the cart. The woman had an epiphany, a priority clarifying moment, and thought to herself, “I don’t care what a single person in this store thinks of me. I am going to take care of my children.”

Even though the customers behind her were grumbling, and the checkout clerk even got on the speaker to say, “This lady with the screaming baby won’t get out of line! Can somebody open another register?” she ignored everybody, held her daughter close until she calmed down, helped her son replace the candy, and paid for her groceries. As she was leaving, worrying about which of the patrons was going to get on the phone and call her mother to report what a spectacle she was at the market (this was a small town), she spotted an old lady following her out. She quickly stashed the groceries and put the children in the car seats, certain she would burst into tears if she had to face the stern-faced woman’s lecture. She didn’t move quite fast enough, and hand on hip, shaking a bony finger in the young mother’s face, the lecturer began.

“Young lady, I just want to tell you that is the most awesome thing I’ve seen in my life, and I’ve seen a lot. I want you to listen to me. Those are some lucky kids, and you are a great mother. Don’t you ever, ever forget who the most important people in your life are. You’ve already got your priorities straight, you just keep ‘em that way. Keep up the good work, and don’t you worry what other people think.”

She turned on her heel and marched back into the store, and the young mom did end up wiping away tears, tears of gratitude. She never forgot as she learned later of her daughter’s Autism, and dealt with the trials it brought, the kindness of a stranger.

So ASD can bring out the best in people. One of the bonuses of having a sibling with disability is that their NT brothers and sisters most often grow into tolerant adults who stand for those who can’t speak for themselves, and value the small as well as the large contributions of others into their lives. They understand from early ages that life is not fair, and sometimes one person carries more of the responsibilities than the other in a relationship. They grow strong and independent, and value people for their own assets rather than trying to change them. One young adult said of growing up with a brother on the Spectrum, “Jacob taught me that people take time, that loving people and having relationships take time and effort. And that’s a good thing. People are worth your time.”

They are.

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