Autism Month Shares

I wrote some things on Facebook for Autism month in April that I decided I wanted to Save somewhere else so I’m posting it here:

I love that they added the word understanding to autism awareness month! I feel like most people know autism exists, but few understand it well.

When my daughter, Nicole first got her diagnosis, I was careful to say she has autism and never call her autistic. I saw the word autistic as an all encompassing label and there is so much more to my girl than that label. She’s bright, beautiful, creative, funny, energetic, loving, and joyful. I thought that calling her autistic meant that autism was the most important thing about her. It’s been a few years since her diagnosis and my understanding of what that label means has changed completely. I see autism as an important part of her identity, but not a bad part. It’s not something to be cured, it’s something to understand and embrace.

I recently listened to the book Neurotribes, The Legacy of Autism and the Future of Neurodiversity by Steve Silberman. I highly recommend this book. The author describes the complexity, diversity, and brilliance found in autism as he describes the indispensable role autistic people have had in our society and the need to embrace neurodiversity.

In the book, Silberman quotes Jim Sinclair, an autistic adult, who describes autism, not as a normal child trapped within an “autistic shell,” but autism is a “way of being …[that] colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.”
“This is what we hear when you pray for a cure. This is what we know when you tell us of your fondest hopes and dreams for us: That your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

Somewhere near the end of the book, the author quoted someone advocating embracing the word autistic over “person with autism” because the latter sounded like autism was a disease to be cured and the former projected acceptance and pride in one’s identity as an autistic person.

I could go on and on, perhaps I’ll share more as the month progresses, but for now I just want to say how proud and happy I am to be the mother of my amazing autistic children.

 

50 quick facts about autism

My Autistic Children:
I’ve been thinking that I should write about my own children’s autistic traits because some of my friends want to know what makes my kids autistic. A lot of the time, my kids seem perfectly normal. In fact, I didn’t pick up on my son’s autistic traits until after my daughter was diagnosed and I understood autism better.

First, here are some general points about Autism that I’ve learned from reading and observation* This is not an all inclusive list, but I share this list first to help you understand how what I write about my children describes what autism looks like in them.

*Disclaimer: I’m a mom, not an expert. I’m sure I still have a lot to learn, so take what I say with a grain of salt.

—Autistic children tend to have very strong interests in particular subjects and a lack of interest in a large range of subjects. If you talk about a subject that interests them, they will have a lot to say. They may not even respond to topics that they are not interested in. This trait often leads them to become experts on certain subjects. They can be so extremely focused and meticulous that some of the most famous intellectuals in the history of the world, were actually autistic.
—Autistic children can be very particular about rules and rule following. Structure and routine are often very important
Preferring nonfiction books over fiction seems to be quite common among autistic children.
—Autistic children often suffer from extreme anxiety. They can become stressed out in situations that don’t bother other children.
—Autistic children often have sensory needs/issues. Sounds, lights, smells, textures, touch, and tastes can cause extreme discomfort to autistic children. Conversely, some autistic children flap hands, spin in circles, chew on things, or manipulate objects with interesting textures in order to help them feel calm.
—Autistic children are often very literal thinkers. They don’t always understand jokes and idioms and they often do not pick up on hints. Speaking directly and literally makes a big difference.
—Some social skills that come naturally to neurotypical children, don’t come naturally to autistic children. Some have a hard time with perspective taking. Neurotypical children naturally pick up on how another person is feeling by their facial expressions and body language. Autistic children often miss subtle clues, even clues that don’t seem subtle to everyone else.
—Autistic children can be blunt and brutally honest. They often lack the social knowledge to understand that not all things should be said, even if they are true.

My daughter, Nicole is a literal thinker. One day we were at the pool and I saw her sitting outside of the water covering her ears. It turns out she heard someone say the water is freezing and she immediately jumped out of the water and refused to get back in because she thought the water was going to literally freeze. She refused to get back in until the lifeguard assured us that the water wouldn’t actually freeze.

She often doesn’t understand jokes. One day I read a children’s joke book to her and after every joke she asked “is that true?” One joke said “Which insect likes toast?” The answer was “butterflies.” Her response was; “that’s not true, ants like toast.”

Nicole can be very blunt, she has no filter and she often doesn’t seem to understand that what she says might hurt someone’s feelings. She will say exactly what she thinks. She has said all of the following to other people: “See what’s in his lunch? That’s why he’s so fat.” “that car smells bad” “You don’t look very beautiful with short hair.” “You need to clean your car more often.” “I didn’t expect her house to look like that because I thought it would be more messy.”

She doesn’t seem to understand the concept of embarrassment. Nothing seems to embarrass her. She used to mix up the order of the steps to going to the bathroom. She’d feel the need to go and pull down her pants and then hop to the bathroom. She even did that at school once in kindergarten. She used to start changing right in the living room, even if we had company over.

Nicole hates the sound of toilets flushing and she will not enter a bathroom with a hand dryer blowing. She will sometimes go into a screaming fit over the idea of entering a public bathroom.

Nicole sometimes suffers from extreme anxiety. She became afraid of the cats we’ve had since before she was born despite the fact that they had never scratched or bitten her. She would scream every time she saw them, refuse to walk down a hall if a cat was sitting in it, and hide under a blanket to avoid them. She became afraid that birds would peck her so she screamed and covered her head every time she went outside and she started licking doorknobs because she thought it would keep the birds out. She suddenly became afraid of trash cans and couldn’t sleep in her room until we removed the trash can. She was having daily 2-3 hour unsolvable tantrums before we started her on anxiety medication. After the medication she rarely has a tantrum and she even enjoys petting cats.

Unexpected things sometimes send her into a meltdown. One time she had to come to church late because she was having a tantrum about not believing that her dress was on backwards. As soon as she entered our pew, she stood up and started to yell that they needed to start church over because she was upset that she missed part of it. Luckily we sang a hymn and she thought church had started over or she would have started screaming and yelling. Incidentally, she was still wearing the dress backwards, but she had allowed her dad to help her fix the buttons.

When Nicole gets upset, she loses her ability to communicate. She will go into a complete meltdown and be unable to tell me why. She literally can’t think of the words to describe what is wrong. I have to make suggestions: “I feel sad because_____” “I feel angry because_____”. She suddenly got very upset in the middle of church last week. I took her into an empty classroom and she screamed and cried and couldn’t tell me what was wrong. It took awhile before she finally came up with the reason she was upset: she had closed the hymn book before the end of the intermediate hymn.

Nicole sometimes has an unusual sense of reality. One time she screamed every time anyone went near a statue because she thought they would turn to stone if they touched it. Another time she was totally convinced that every log building was on fire inside and refused to enter. She once claimed to see a noodle wiggle and then refused to eat noodles. Another time she proudly proclaimed that she licked the bowl of leftovers so that no one else would eat them, but before she took a single bite, she heard a “buzz” and refused to any.

She is both intrigued and fearful of diseases. For no apparent reason she thought I had leprosy one morning and wouldn’t let me go near her. If you told her you have a cold she might literally run away screaming.

Rules and rule following are very important to Nicole and it can be quite distressing to her if someone is obviously breaking a rule.

Nicole has a very curious and inquisitive mind. She is often enthusiastic and energetic about learning things which makes it really fun to teach her things. Conversely, she will completely ignore you if she’s not interested in what you are talking about. I went with her class to the zoo one day. Right after the trip, my mother tried to ask her about the animals. My mom asked what animals she saw? What was her favorite animal? Nicole completely ignored her. I recommended that my mom ask about the bugs Nicole was currently hunting in the yard. Nicole lit up and became very animated as she talked about the bugs she was looking at.

Nicole has started showing a strong preference for nonfiction books and magazines. At her most recent doctor’s appointment she ignored all the children’s books and went right for the Better Homes and Gardens magazine because “magazines tell the truth.” She was talking loudly and excitedly about everything she saw in a magazine at the hair salon and I heard the other patrons chucking at her enthusiasm over everyday things..

Where Nicole is embarrassed by nothing, my autistic son is embarrassed by everything which is a big part of why I rarely talk about his autism in public and why I avoid using his name online when talking about autism. . His autistic traits are generally more subtle and some of them have lessened in the last few years.

He is very particular and inflexible about where he sits. He will only sit in one spot in the living room and he will become very upset if someone else sits in his spot. He will always sit in the same spots at church and if someone sits in his spot during Sunday school he will be visibly distressed. In elementary school he would not eat his lunch if someone sat in his spot in the lunchroom. A neighbor boy discovered this oddity and would intentionally race into the lunchroom to sit in my son’s lunchroom spot.

He gets extremely anxious about unusual things. My children came with me to visit a friend I’d known since I was a child. My son “could not bear” to eat his sandwich on her plates because “he didn’t know her well enough.” He ate the exact same sandwich on a napkin just fine. (the dishes were perfectly clean).

You wouldn’t know it to look at him, but he is particular about what he wears. His daily wardrobe is T-shirts and Jeans. For years he has refused to wear any other type of pants (except on Sundays when he proudly wears his suit). He will now occasionally wear the one pair of khaki pants he owns. He will not wear shorts. For years he would only wear a small selection of T-shirts, mostly composed of shirts from events such as cub scout camp. I would buy him brand new shirts and he would tell me he couldn’t “bear to wear them,” but he couldn’t describe what quality was unappealing. I don’t know what changed, but I have noticed him wearing the previously unbearable shirts this year. He particularly likes clothing if you can convince him that it’s technical in some way. Once he lost his coat at school and I tried buying him a new coat. I actually ended up buying 4 coats. He couldn’t bear to wear any of them and eventually found his lost coat. I now know that I have to get a coat that claims technical advantages (3-in-1, with coldness ratings) in order for him to accept it.

He used to hate riding in other people’s cars. He was literally in tears at the idea of riding home from cub scouts in his best friend’s car. (I think that’s less of an issue now). He also gets really anxious about going to a friend’s house. He would much rather have a friend over.

He has some social skill deficiencies. He has trouble with perspective taking. He assumes the other person in a conversation has similar knowledge as him so sometimes it sounds like he starts a conversation in the middle. He doesn’t build bridges very well for his listener. He doesn’t pick up on clues about his listener’s interest level in the conversation. He sometimes has poor eye contact and he often walks away as he is talking to me.

He is also a literal thinker, although he’s not as obvious as Nicole. He doesn’t always understand humor well or pick up on when someone is teasing or being sarcastic. He’s not good at picking up on hints.

He has intense interest in math, science, and history. For years his favorite books were military history books. He absolutely hates reading fiction (although he does enjoy listening to his father read fiction books aloud). He would choose to read a math book over a good novel. He is very good at math and finds solving difficult equations very exciting. He loves computers, technology and computer games which is very common for autistic adolescents.

He generally does very well surviving life without accommodations. He has always been in either regular or accelerated classes. Although he struggled to make friends for years, he now has several friends who come over often. Ironically, several months after we got his official diagnosis, he self diagnosed. He watched a video with a variety of autistic children in it at school. He told me after watching it that he “has a little bit of autism.” I’ve helped him see autism as a part of him that isn’t bad and I think these days he would say that he’s even a little proud to be autistic.

“If the awareness has no impact outside of the internet it has no impact at all. . .After all, what’s the point in someone claiming they’re “autism aware” if they’re still staring at the ‘badly behaved’ kid in the restaurant? and if someone gives a judgey-face to the child having a meltdown in the supermarket, are the parents likely to care what color that person’s profile picture is?” -autisticnotwierd

I promise this is the last one for awhile. I hope my friends have learned a little more about autism this last month and some of your previous understanding has been changed–that was my goal. To help others understand autism a little better and recognize that along with the struggles, there is also greatness. Autistic people are not uncaring, unloving, devoid of feelings or incapable of loving and often you find they’re incredibly creative and brilliant in their own ways.

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