The Fires of Autism

by Lynn Messing

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  Afterword

  Disclaimer: Except for Todd, any resemblance of any character in this story to any real person, living or dead, is purely coincidental. Todd was largely, although not entirely, inspired by my son. For example, my son had the precocious shape and letter recognition and musical abilities attributed to Todd.

  I have tried numerous interventions with my son, with varying results. Although my son is still extremely affected by autism, he is far from the zombie he had been at his worst. The greatest improvement came precisely three days after we started the first intervention -- putting him on a gluten-free, casein-free diet. That was when he gave me the first hug he had given anyone in months. I haven't the words to describe how powerful that moment was for me, but I wrote this story in part to try to convey both the depths of helplessness I had felt leading up to that point and the elation that came with that first hug. (Incidentally, I had been fortunate in that my son's neurologist pointed me to Temple Grandin's books right after he confirmed the diagnosis of autism.)

  I discovered that, as mentioned in the story, there are a plethora of therapies available which range from very beneficial to pure quackery; many are in a grey area somewhere in between. (Incidentally, this story is intended to take place in the mid-1990s, and the therapies mentioned were all in existence at that time.) Please do not assume that inclusion of a therapy in this story is an endorsement of that therapy; I tried to mention therapies of varying effectiveness to keep the story more true to life. Also, what helps one child might not help another. The two pieces of advice that I think everyone in the autism community would agree upon are: 1) Do your research, and 2) Start as early as possible whatever interventions your research leads you to believe are appropriate. (Well, actually, it is best to stagger the starts of interventions so that you would have a better idea of which one was proving to be effective.) The importance of early intervention cannot be overstated.

  Please note that while I have tried to be at least somewhat balanced in this story, I have touched upon several very controversial topics. I imagine that my views on at least some of these topics will be easy to discern, but I did try to be fair to "the other side" in each issue.

  Also be aware that Dr. Connolly was very old-fashioned; his advice to institutionalize Todd would have been more likely to have been given by a doctor decades earlier.

  The cover image is a cropped version of a public domain photograph taken from

  https://digitalmedia.fws.gov/cdm/singleitem/collection/natdiglib/id/10697/rec/2.

  I wish to thank Stacy and Margot for beta reading this story; their suggestions greatly improved it.

  If you wish to know more about autism in general or what it is like for me to raise a child on the spectrum, I would be happy to answer any questions. If you or someone you know has a child who has just been diagnosed as having autism, and you wish to talk with someone who has travelled that road, don’t hesitate to e-mail me. My e-mail address is: @verizon.net. (I've obfuscated the address to lessen the chance of spam from spambots.)

  Finally, if you liked this story, please leave a review of it on your favorite retailer’s web site. Thank you.

  - Lynn Messing

  About the Author

  Lynn Messing has loved language all her life. She studied four foreign languages in high school and went on to earn a doctorate in linguistics. It is therefore ironic that her son Andy, who is extremely severely affected by autism, has minimal expressive language skills.

  Andy has probably taught Lynn as much about communication as all of her graduate school instructors combined, and he has definitely taught her more about patience and love.

  In addition to raising Andy, Lynn also teaches computer networking and security at a nearby community college.

  She can be reached at the following address: [her first initial][her middle initial, which is “S”][her full last name]@verizon.net

  References

  https://articles.sfgate.com/2003-05-14/news/17491408_1_autistic-children-autism-neurodevelopmental-disorders

  https://templegrandin.com/templehome.html

  I am purposely refraining from including references to any specific interventions, but I would be more than happy to share them with any reader who asks. Feel free to contact me at the following e-mail address: @verizon.net. (I obfuscated the address to lessen the chance of spam from spambots.)

  Also by Lynn Messing

  Echolalia is a sequel to The Fires of Autism. Jerome's dearest wish is to have a real conversation with his younger brother. Will Todd's echolalia be the first step in making his wish come true?

  For the Long Term is told through blog posts that describes what happens when a “word tax” is imposed to raise money to cover the expense of enhancing national security following a major terrorist attack.

  Gesture, Speech, and Sign (primary co-editor) is a multi-authored scholarly book on the relationships among spoken language, signed language, and gestures.

  Bonus Story: The Not-So-Great Escape

  "All right, kiddo, time to take off your swim trunks."

  As Laura unhooked the combination lock, opened the locker door, and retrieved her younger son's towel and clothing, she kept up a steady stream of speech.

  "We had fun in the pool today, didn't we? What should we tell your brother and Dad about it? You did a lot of splashing, didn't you?" Laura thought that there really wasn't much exciting to tell Calvin and Jerome about their afternoon at the pool.

  "Here. Feel how soft the towel is? Let me dry you with it." After Todd was dry, Laura started to dress him.

  "I wonder how Jerome and your Dad are enjoying their movie? I guess we’ll find out when we meet them for ice cream in an hour. Do you think Jerome will like the new bike we bought him for his birthday? It's hard to believe he's seven already. It seems like just yesterday when he was your age."

  Although she had already had plenty of practice with one-sided conversations, she still found it hard sometimes to come up with things to say. It had been so much easier having them with her children when they were cute babies who made good eye contact and who didn't understand her speech. But now Todd seldom looked at her, and she often had no idea how much her three-year-old son was actually understanding. She knew he got a lot more out of conversation than the casual observer would realize, but even she had no clue how much more. But she wanted to provide him as language-rich an environment as possible, so she just kept on talking.

  "Which would you like to put on next -- your shirt or your pants?"

  Todd reached for the article of clothing in her left hand.

  "OK. Shirt it is, then. Hold up your arms, please, so I can put it on you.

  "So, we'll head to the Ice Creamery when we leave here, and after that, we'll go home and give Jerome his presents. Which one do you think he'll like best?"

  As always when she asked Todd a question, she paused to give him an opportunity to answer. He had never done so yet, but maybe he would one of these days. She then continued to speak to him while she finished getting him dressed.

  "All right, kiddo. Now it's my turn. Please sit on the bench while I take off my bathing suit." Todd sat down and began kicking his legs. A few seconds later, her suit on the floor, she turned her attention to the locker as she retrieved her street clothes. When she turned back, the bench was empty.

  She belatedly realized that she had only asked Todd to stay seated while she took her suit off. He did precisely as she had requested. She should have remembered the tendency for people on the autism spectrum to interpret language literally; in his mind, he had followed the directions appropriately.

  Laura's eyes darted frantically until she spied her son about ten feet away from her and rapidly increasing the distance. She chased after him, not sparing the time to grab a towel.

  "Todd! Stop! Come back here!" She knew he heard and understood her, but Todd kept right on going. He could be so infuriating at times!

  They raced
past a row of lockers. She was narrowing the gap, but he moved so fast! She was only about four feet away from him when he turned the corner and shot out of the locker room through the doorless entryway and into the gym's general (and *CO-ED*) lobby area.

  Fortunately, Todd chose that moment to plunk himself down on the floor. Unfortunately, he was about 25 feet out of arm reach, and he continued to ignore her commands.

  A few men and women were strolling through the lobby. Laura pressed her body against the wall and stuck her head out into the common area.

  Laura didn't dare let Todd out of her sight long enough to retrieve her towel, nor could she go out to get him in her current au naturel state.

  Instead, she did the only other thing she could think to do: She threw herself on the mercy of the passersby. She called out, "My son has autism and I'm naked!" (She thought, a bit hysterically, about what a perfect headline *that* would make for a tabloid article.) "Could someone please bring him to me?"

  A small, middle-aged woman took pity on her. She grasped Todd's hand and guided him into the women's changing room.

  Laura gushed her relief. "Thank you! Thank you so much! I had no idea what I would have done if you hadn't helped."

  The woman smiled. "Not a problem. Would you like to me to hold his hand while you get dressed?"

  "Oh, would you, please?"

  The two women walked to Laura's locker.

  "I had only turned away from him for a few seconds. He's so fast! It's getting harder and harder for me to take him swimming by myself. But he just loves to swim, and it's one of the few things he does that is like other kids. Well, he doesn't really swim yet, he just splashes around. But he does have fun."

  While Laura was babbling and getting dressed, she was also observing the woman. Todd had taken an obvious shine to her and was rapidly and repeatedly patting one of her hands with his free hand. Most people would find such behavior annoying, or at least off-putting, but the woman was taking it in stride and was smiling at Todd.

  "Say, you really have a way with him. Do you have a child with autism yourself?"

  "No, but I teach kids who are on the autism spectrum."

  As Laura pondered this coincidence, she knew one thing for sure: She would, after all, have something interesting to relate to Calvin and Jerome at the ice cream parlor.

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  Author’s note: If I were a reader of this story, I might consider the ending coincidence to be extremely farfetched. The only reason I as an author have dared to write it into this story is that it actually did happen to me. Although I have fictionalized some of the details, the major events of this story really did happen: my son did dart from the locker room just after I had taken off my swim suit, I did chase after him without taking the time to cover up, I faced the dilemma Laura faced about what to do when her son ran out into the public area of the building, and our rescuer was in fact a teacher of kids with autism. So when I wrote this story, I simply decided to make fiction be as strange as truth.

  Free Sample of Echolalia

  I love my brother, but I hate pumpkins, flicked light switches, and VitaLad.

  OK, maybe I don't hate them, but I am really, really tired of them. You see, they are my brother Todd's obsessions. Mom says not to call them that; she says to call them his 'special interests.' She says that people with OCD have obsessions; people with autism have special interests. Don't ask me what the difference is; I sure don't know.

  Let me tell you about his special interests. His fascination with pumpkins started last Halloween. Dad bought a plastic pumpkin that he put on the dining room table as a centerpiece. Todd loved it. When November came, Dad tried to put it away for the year, but Todd wouldn't let him. He kept getting it out of the basement and putting it back on the table. Even though it's May now, we still have the silly thing in the middle of the table.

  What's worse is that whenever we leave the house, he insists on taking it with him. It's embarrassing going to the mall and having your kid brother hauling around a plastic pumpkin. But if Mom and Dad try to make him leave it at home, he has a meltdown. And let me tell you, if you have never seen a ten year old kid have a fall-on-the-floor-kicking-and-screaming-at-the-top-of-his-lungs meltdown, consider yourself lucky. If Todd is forced to leave the pumpkin at home anyway, he will keep carrying on like that until we get home, even if we are gone for hours. Our parents tried that once, so I know. Only once, though. Then they decided it just wasn't worth the hassle, and he was allowed to bring the pumpkin with him after that.

  But the worst part is the ride on the school bus. We've been riding the bus together since last month. Before that, he had been in a school just for kids with autism, but last month they moved him into a special classroom in my school. His new class has five other kids with autism, one teacher, and one paraprofessional. He's not around neurotypical kids once he is in school, and that's a good thing. The neurotypical kids are really mean to him. They tease him and call him 'Linus.' I'm not sure whether they do that because his pumpkin reminds them of the security blanket that Linus van Pelt always carried around in the comic strip 'Peanuts,' or whether it was because of Linus' belief in the Great Pumpkin. Either way, it hurts me to watch them tease him like that.

  And it bothers Todd, too. I doubt the other kids realize how much they are getting to him. Teasing doesn't make Todd cry, and his face is a mask not given to showing his feelings. But I can tell the teasing is really upsetting him, too. Whenever he is upset, he'll flap his hands. And he does a lot of hand-flapping on the bus rides.

  I want to tell the other kids to knock it off, but I know that the best way to make bullies stop is to act as if the bullying doesn't affect you. And so that's what I've been doing. But I hate to see Todd picked on.