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Life With an Allistic Child: A Satirical Piece

(AKA: What if we lived in a world where “autism” was considered “neurotypical”?)

“Mama, do you know what I wished for when I blew out my candles?”

“What, baby?”

“I wished that Sarah didn’t have allism.”

That was the sentence that froze me in my tracks. It was last year, on my son’s eleventh birthday. All the guests had left and we were cleaning up after the party. I thought about what most eleven-year-old boys would have wished for-probably a new video game, or a dirt bike. Not my son. No, his wish was more of a plea. A desperate plea for normalcy, for peace.

Like he said, Sarah, his sister and my youngest daughter, has allism. When most people hear that word, they think about the stereotypical portrayals in movies like Pain Man, or shows like The Mediocre Doctor. Honestly, I thought the same things until my daughter was diagnosed as allistic when she was a toddler. Let me tell you, I was wrong. Dead wrong. I was in for one hell of a wake up call.

It started when she was a baby. We noticed that she loved people. By loved, I mean that she would NOT stop staring directly into their eyeballs. I’d pick her up, and there would be these huge, piercing orbs staring back at me. It was rather unnerving. I had brushed it off as her just being curious about the crevices in my face. Then the waving and smiling happened. It wasn’t just for me, my husband, and other people she knew, oh no, it was with random strangers everywhere we went. She’d lock eyes with someone, and bam, out came the smiles and tiny waving hands. “Oh,” people would say, “you’ve got a little social butterfly!” We would laugh it off, and I’ll admit, her little grin was precious, but deep down, we were scared.

Sarah was clingy. She could never not be in the arms of another person, be it me, my husband, her grandparents, or anyone else in the room. Whenever we’d put her down, she would fuss and follow us everywhere until someone picked her up again. She had to be within the vicinity of other people at all times. Not only that, but physical contact was an absolute must. People with allism have a need for constant physical affection, and thus often have no sense of personal space. As a baby, she would always be breathing in my face or touching me, and I’d get so overwhelmed I’d have to put her down. Then the crying would start and the cycle would continue. It was-and still is-truly exhausting.

And let’s not forget to mention the response to hearing her name. Whenever she would hear someone mention it, her head would instantly jerk in the direction of the person. People with allism often respond immediately to their name being called, as if they’re being controlled by a remote.

Now onto the subject of milestones. Allistic individuals have the tendency to develop at a very predictable pace, unlike normal people, who have varied stages of development. Sarah crawled at eight months, then began walking like it was nothing. At first, I was impressed. Wow, is my baby advanced? But then, at just a year old, she said her first word: Dada. I nearly lost it. Not only did she say an intelligible word, but was one pertaining to a person, not an object word like “dog” or “car”. This is when the worry began to really set in.

When she was a toddler, I finally took Sarah to the doctor to be evaluated. My worst fears were confirmed when the doctor handed me the pamphlet. I broke down and sobbed in the examination room while the doctor attempted to console me. He said it was perfectly normal to grieve the child I would never get to have. My child would never stim properly, have a special interest, or stop making “small talk”. I felt so hopeless. The trauma of her diagnosis still runs deep. Specifically, she was diagnosed with allism spectrum disorder, level 2 (the highest is 3). Meaning her allism is quite severe, borderline profound, and borderline neurosubdued.

Funnily enough, this wasn’t our first experience with allism. Sarah’s older half-sister, my step-daughter, has it, albeit she’s very high functioning (I suspect being an introvert with ADHD has something to do with it). Also, we’re pretty sure my husband has it as well, though he’s never been diagnosed. It was easy to miss with him. He’s one of six children, and his parents both come from large families, too. He has an uncle and two cousins who are severely allistic as well. He’s used to chaos, which is why I believe he handles our situation so well. I also think that’s why he still gets along with his ex-wife, the mother of our two oldest children. Hell, I even get along with her. I’ve heard so many horror stories about the marriages of severely allistic individuals ending on sour notes, with heated arguments and bitter custody battles, because they just cannot communicate properly. I don’t even want to imagine what it would be like if my husband wasn’t so high functioning.

Anyways, back to Sarah. When she was newly diagnosed, they immediately suggested we put her in ABA (applied behavior acceleration) therapy. She would attend for twenty hours per week. Many allistic individuals protest ABA, calling it abusive, but I disagree. Our ABA is different. It’s changed a lot since it was first developed by Dr. Ima Betch in the 1960s. Look, I’m sorry if you had a bad therapist, but not everyone’s experience is the same.

On her first day of preschool, Sarah was approached by another little girl who had her hands full of plastic dinosaurs, asking if she wanted to play. Sarah promptly put her hands on her hips and replied “That’s for booyyyss.” Sarah is a total girly-girl. She loves all things pink and sparkly. I would be just fine with that, except I can’t help but wonder if she likes those things because she feels she has to, because she’s a “girl”. Allistics tend to follow a strange set of social rules that only they seem to understand, and yet, they expect everyone else to follow them, too. This can include adhering to “traditional” gender roles. I gently reminded her that dinosaurs are for everybody, and that there’s no such thing as “boy” and “girl” toys. Still, she ended up playing dress-up with another little girl, and dino-girl seemed fine playing on her own, so I guessed it worked out okay. As she’s gotten older, I’ve also reminded her that she enjoys hiking and fishing, and plays on a soccer team. She replied that the first things don’t count because she “does them with her dad”, and soccer is a sport that’s commonly played by both sexes. Also, her soccer uniform is, wouldn’t you know it, pink. Allistics hardly ever say what they mean and mean what they say.

People with allism suffer from poor theory of mind. Right before she started kindergarten, I took Sarah for another doctor’s appointment so that she could be approved for an IEP at school. She took a test that I’m sure is familiar to a lot of allism families. It involves two people, a small object (ours was a marble), and two boxes. Person A is holding a marble, then puts it in box number one. Person A then leaves the room. Person B then takes the marble out of box 1, and puts it in box 2. The question asked was when Person A comes back into the room, where will they look for the marble? Most allistic people, Sarah included, say box number 1. Someone without allism would come up with a variety of answers, due to lack of information. Did B tell A that they moved the marble? Did A ask B about the marble? Did A even want the marble back in the first place? We don’t know. However, most people with allism are convinced they have the correct answers, even when their information is limited. Another example of this is when Sarah saw one of her classmates, Mary, fall on the playground, to which another student, John, helped her up and took her to the nurse. I asked her, “Why do you think John did that for Mary?” She said, “Because it was the right thing to do.” She seemed to think that people only help in situations because it’s “right”, not because it’s “kind”. She didn’t realize that John saw that his friend was hurt and was concerned for her wellbeing, not his own personal image.

Allistic people never communicate directly. They always drop subtle hints and vague expressions. Look, I love a good metaphor, but there is a time and place for them! For example, one day my daughter saw an ad for a burger restaurant on TV and said, “That looks really good!” I agreed, and thought nothing of it, until dinner, when she saw what we were having, she whined, “But I wanted burgers!” I said she didn’t tell me she wanted burgers, and I would have made them if she’d asked. Sarah huffed. “I said the burgers on TV looked good!” She expected me to understand what she wanted just by one comment. Allistics also have a hard time expressing emotions. They have a very black and white view of feelings, thinking certain gestures mean certain things, like crying means sad, smiling means happy, connecting eyebrows mean angry, etc. Sarah always thinks people are mad when they’re only displaying their “resting face”. When people don’t have the “proper” emotional reaction to something, she gets unreasonably upset, calling them “rude”. This has made holidays and family gatherings especially difficult. One instance that springs to mind is when we attended the funeral of an old family friend. Sarah, along with myself, my husband, and my stepdaughter, were all in tears as we said our final goodbyes. Our two sons, however, were not. After the funeral, Sarah accused them both of not being “sad” that she was dead. We tried explaining that grief shows up in many different ways, and not everyone expresses it by crying. But she still said that they “weren’t really sad about it”, and that she “didn’t think they cared about our friend at all”. I suppose she got what she wanted, because my younger son actually burst into tears upon hearing that. As a result of that, we are working extra hard in ABA on feelings, even though Sarah whines that it’s “not that big a deal!”, we think that it will be beneficial in the future.

Sarah’s senses are severely broken. She doesn’t notice certain sounds, scents, and skin sensations like most do. One day, I took her and one of her friends shopping. The friend found a cute outfit, but as soon as she felt the material, she recoiled in disgust. But then Sarah saw the exact same outfit, and requested to try it on. Her friend and I were bewildered as she stepped out of the dressing room to model for us, explaining how much she loved the outfit and just had to have it. When her friend asked about the material, Sarah raised an eyebrow.

“What do you mean?”

“The fabric. Isn’t the texture awful?”

“No? It feels just fine!”

As the cashier rang us up, her friend kept questioning her, to the point where she rolled her eyes and said, “It’s just fabric, Heather, geez”. Yes, it may seem like a good thing that bad textures don’t bother her, but think about it. She’ll never know the true sensory euphoria that comes with petting an animal, or the leaves crunching under her feet in the Fall, or the way a chewy feels between her teeth. This also could be dangerous, for example, she might not notice if her food or drink smells differently than usual, and therefore not realize it may have been tampered with. She doesn’t realize how much certain perfumes that she puts on overwhelm some people; she just thinks that it smells good, so why not? She doesn’t want to use fidget toys or noise canceling headphones in public, and gets “soooooo embarrassed” when her brother wears them out. She will never fully experience the big, beautiful world around her, and that breaks my heart.

I’m going to tell you the thing that hurts me the most about my daughter’s allism: lack of special interests. See, Sarah likes a lot of things- dogs, My Little Pony, Disney, soccer, Olivia Rodrigo, hiking, fishing, rollerblading, the “Dork Diaries” book series- but she doesn’t seem to know that much about any of them. She’s perfectly fine with knowing only a few things about her interests, and only thinking about them some of the time. I asked her what her favorite breed of dog was. She replied, “Ours, I guess.” Our dog is a shelter- adopted mutt. We have no clue what breed she is. Any autistic person could have named hundreds of breeds off the top of their head. I mentioned she plays soccer; she says she enjoys playing on the team, and I believe her, but does she have a favorite professional soccer team? Or player? Is she knowledgeable about the entire history of the sport? Does she come up with intricate strategies about her next play? No. Of course not. She just wants to have fun with her friends, and I guess that’s okay, but I just don’t understand supposedly “loving” something, and not knowing a thing about it. I will never have a conversation with her about a special interest. All I hear about all day is mindless small talk about the weather and sportsball and the latest “tea” on her classmates. When will she learn that I don’t give a damn what Jennifer did? How can she be talking constantly, yet never say anything at all?

Of course, you can’t mention severe allism without mentioning the profound impact it has on families. My two older stepchildren have told me that the only reason that they haven’t moved in with their mom full time is because they know how much it would hurt their dad and little brother. I told them that we would understand and wouldn’t blame them, but they affirmed their stance. They get refuge from Sarah on the days when they stay at their mom’s, but my youngest son is a different story. He does try and get refuge from my husband’s parents, who live within walking distance from us. But of course, Sarah has to barge in and put all the attention on her. She will insist on following him, because she “wants to see Nana and Papa, toooooo!” We’ve had to make it so that they visit their grandparents at different times. This is just one example of how allism ruins and destroys family time.

Sarah always wants to be the center of attention. She has issues with empathy. And yet, she somehow thinks we're the selfish ones. Whenever she expresses a grievance and another person tries to connect by talking about a similar experience, she sneers, “Stop making it about you!” Oh honey, you’re one to talk. It was just a few months back. Sarah and I were at the doctors office. Her pediatrician and I were discussing how we could make it easier for everyone around her to tolerate her allism. Sarah kept interrupting, “But how is all of this supposed to help me?” I can still feel the embarrassment and the look of pity the doctor gave me. After that, we were driving home, and for the hundredth time, Sarah moaned, “Mom, how is all that stuff gonna help me?” That was my burning point. I felt white hot anger rising as I pulled the car over to the side of the road. I turned to Sarah and snapped, “It is not. ALL. ABOUT. YOU! I give you shelter, food, and clothing, how are you this ungrateful!” I suddenly pictured her all grown up, her house decorated with “live, laugh, love”, her selling crappy MLM products and driving around her bratty kids in a minivan, while she’s in an unhappy marriage with a husband who’s cheating with his secretary.

Sarah shrunk back and mumbled “Okay.” She didn’t seem to be upset anymore a few minutes after that. Allistic people are bafflingly unaffected by rejection sensitive dysphoria, thanks to their lack of emotional depth.

So, this is where we are. Now, there are many high-functioning allistic “advocates” who speak over parents like me and tell us that allism is a “superpower” and that we should embrace it, but unless they walk a mile in my shoes, they will never understand. Their allism is much different than our allism. They say functioning labels are “useless”, and we should stop saying “Buddohl’s Syndrome”, which was first discovered by Dr. Stan Key Buddohl in the 1940s. I call BS. My husband and older daughter are proud “Buddies”; they understand how privileged they are. Call me a conspiracy theorist all you want, but I’ve taken the liberty to encourage other parents to “extra-vax”. People call me “ableist” and claim that the recommended dosages of the vaccines are the correct ones, but I know better than to trust big pharma! I’ve heard people say that one minute their kid was normal, then they didn’t get enough of the MMR, and BAM, their kid was responding to their name like a trained dog.

I’ve started Sarah, and to an extent the rest of the household, on the GD40 (gluten, dairy, and red 40) diet. People say that lack of these nutrients accelerates the symptoms of allism. Some have warned me that this type of diet may be detrimental to my family’s health, but I don’t care. If it were your child, you would try everything.

So, back to that birthday party where we began. My son had just told me that he wished that Sarah wasn’t allistic. A lot of those so-called “advocates” will say that this is “ableist”, but I disagree. He is saying this out of love, not ableism. He doesn’t want his sister to suffer anymore. He just wants to have a normal, quiet childhood like his peers. Plus, he doesn’t want the burden of caring for Sarah after my husband and I are gone, and he doesn’t want his other siblings to as well. This is the case for many allism families.

I quickly pulled him into a hug, and told him he was such a good big brother for tolerating his little sister, and that I know it must be so hard to live with this. Of course, Sarah was across the room and yelled, “Hey, I can hear you, you know!”, once again making it all about her. I assured my son that she would get over it quickly. (Again, lack of RSD).