Hey Joood

So you ask, what is autism? That’s a reasonable question because without a family member with the disability, why would you know? Autism is a neurological disorder characterized by impaired social interaction and difficulties in communication, both expressive and receptive. The wiring in my son’s brain is all out of whack; as a result, he’s a knucklehead. He’s also handsome, silly, affectionate, quirky, physically normal, and predictably unpredictable. He stands at 5 feet 9 inches tall and weighs about 145 pounds. My apologies to my global readers for my lack of metric measurements–just know that he is of medium height and size for a young man. Since I wrote that, Danny decided to go on a growth spurt–he’s now 5′ 11″ and weighs 158 pounds.

Danny age 18

This young man is now 24 years going on two, maybe three years old. He’s a low functioning, highly irrational, low intelligence, nonverbal dude who loves Disney movies and musicals. He’s a skinny guy, except after meals when his belly bulges out, for he eats like a teenage boy. He’s a giant toddler with a very complicated brain, hormones, a minuscule sense of judgment, and whiskers on his chin (I use an electric shaver on him–it’s never a good idea to use a razor blade on a moving target). He’s so strange, he likes going to the dentist. And even though he does not speak, he vocalizes often and in various octaves and in fluctuating decibels. He makes happy eating sounds that resemble a cross between a hum and growl with a mouth full of food. When he rolls over while sleeping he growls like a bear cub. He lacks any sense of modesty–we get mooned at least once a day. When he smiles my chest swells and presses hard against my ribs.

Why am I sharing this information? Because families in similar circumstances should know they are not alone. Will I impart everything about life in my house? No. Will I end up telling more than I now intend? Probably. Though having a handicapped child is humbling and tragic, it’s important for me to know that I didn’t cause it. My husband of 25 years didn’t cause it. My son isn’t a crack baby or even a preemie. He came out well-baked with shaggy hair that covered the tops of his ears. I was very careful during my pregnancies. So why do I have one college honor student and one goofball? I don’t know and I don’t worry about it. I’ve never stewed over why me, why us questions. In fact, why not us? Things happen. We deal with it.

Here’s some insider information on meeting parents with autistic children: Never ask if they have special talents. Yeah, we parents know people watch the news magazine shows on TV or maybe even read articles about one unusual kid. This is what each of those parents think: “No, you condescending idiot, this isn’t bloody Rain Man, he’s just a regular autistic kid. If he had some special gift, I’d have boasted about it immediately. Now get out my face and stop reading about savants, they occur once out of every eleventy-zillion autistics.” What they will politely say is: “No, he/she does not.” I know this makes me sound snarky–in this matter, I guess I am.

Secondly, never describe an autistic person within hearing range of a parent of such a person as someone “who lives in his own world.” Truly, if you want to keep your face intact, don’t aggravate a stressed-out parent. My son will notice (and perhaps swipe for his own collection) any new photograph I display in my home and will probably notice any new entry in our extensive book collection (especially if it has a red or yellow cover). And he’s schemer and an opportunist–he’ll wait patiently for his chance, then he’ll strike at an amazing speed. He can steal a brownie off a cousin’s plate as fast as you can blink. He has a special radar for goodies with frosting. How can those examples be considered living in his own world?

Oh, and that feature you heard or read about that portrays a miracle breakthrough–we’ve heard about them all, so don’t even bother us with it.

Truly, autistics vary greatly in their powers of observation, and in every facet of their personalities. I’ve been told by professionals that Danny is observant for an autistic, yet compared to other autistics he’s quite shy. But take my advice–if you meet parents of autistic people, don’t think you really know or understand anything. Because you don’t. Just say something kind like, “That must be very difficult.” Then follow up with a comment on the weather. Those parents will volunteer only the information they choose to divulge. Prying will only get you stricken from the friendship list.

Parents, remember that constant tension you felt when your kids were little? Where is he? What’s she doing? Don’t hurt yourself. Be careful. Well, with a low functioning autistic, you never lose that edge. Ever. My son will never substantially progress. Oh, sure he’ll learn new things (slowly) at “school”–his vocational training center (he’s learned how to assemble a flashlight), or at home (he’s now using a tissue when he blows his nose), but he’ll never speak or have friends or live independently. I’ll be at home with him after school for the rest of my life watching Lion King. Actually, I’ll be reading, writing, or blogging while Disney movies play in the background. Though sometimes we’ll watch a movie of my choosing. Last week we watched Volver–he didn’t seem to mind that it was in Spanish. Come to think of it, he also enjoyed Amelie and Juno. (Perhaps he just likes close-ups of women with big brown eyes.) He was annoyed, however, when I played Sleeping Beauty in French. He knew it just wasn’t right.

So how difficult is he? This is the topic I hesitate to explain. Some things are just so personal and so much a part of our day-to-day life. I will mention that he doesn’t do well with change. He needs every day to be the same. My husband and I are natural home-bodies who have easily adjusted to his need for structure and routine in daily life. He’s also easily startled and stressed by the presence of a new person. This often includes a visitor to our house or even my husband when he comes home from work. Perhaps some of you experience the same situation in your homes. In the case of my husband, I simply remind Danny that Daddy is coming home. With visitors, we show him photos of the family members coming to visit. This helps to calm and prepare him for their arrival.

But what happens when he becomes agitated? I will say his ability to calm himself has improved substantially over the last couple of years; also, he should mellow once he gets past his current peak hormonal years. And he really doesn’t want to experience the loss of control and the aftermath. And I could just keep typing and never answer the question. I could just go on and on and never say how important it is for us to have courage. I’ll say this–remember I said he’s a physically normal young man? Do you recall how “normal” young toddlers have tantrums? Put the two together. The difference involves the tendency of autistics to injure themselves. Could you watch your child injure himself and not intervene? I pray every day that we won’t experience any violence, and we generally don’t. Yet sometimes I have nightmares about it. Okay, that’s enough. I’m going to go watch baseball now. No, first I will tell you that despite the occasional tough day, I am happy and content with life. My wish for my son is that he will be happy and content in his life.

You may wonder, just how odd is our home? Well, we have combination locks on the refrigerator and on cupboards with food; this prevents him from sneaking down during the night and emptying the contents of the fridge and freezer onto the kitchen table in a weird smorgasbord. We use motion detectors at night and hang wind chimes and Christmas bells on exterior doors in case he decides to bolt (he hasn’t done that in several years, but we have long memories). We can’t use our fireplace as the hearth is covered in an assortment of colorful balls, Snoopy, and the Cookie Monster. In the basement he has his own table and sofa (he won’t allow anyone to sit with him except his cousin Brad), which is piled with his “friends”–books, balls, stuffed animals, magazines, and DVD boxes. Since he was banned from a hair salon at an early age for excessive crying, he’s been getting the same buzz-cut from me since he was age five. I trim his sideburns at night by the light of a flashlight. One of our great advances came when he started allowing me to clip and file his fingernails during daylight. Yep, we have lots of things going on at our house that most people would consider odd. But this is our normal. I think it’s fun for Danny and me to wear matching STAR WARS t-shirts. Ours is a well-functioning dysfunctional household.

He has a different perspective on life, thus it affects the strange things he does. Sure it sounded strange when I told him not to run with the can opener like it was a football, or when I told him he shouldn’t throw loaves of bread behind the TV. Sometimes he likes the wrapping paper better than the present. He’s big on circles–he’ll walk in circles around us or move his hands in round shapes in the air or around his dinner plate. Next week it will be something different. And if it’s something funny, we’ll laugh. We laugh at him, but mostly we laugh at ourselves. We’re in big trouble if we ever lose our sense of humor (or our ability to outwit him). Yet there was a time when nothing was funny. Learning that our son was autistic devastated us. Yes, we kept functioning, but we felt a tremendous sense of loss. And we did, in fact, lose the ideal of a normal child. I mourned him as if he had died, yet he was still here with us–looking at the pictures in a book with his sister, running around the house lickety-split, splashing in the bathtub, bouncing in his chair. Those big green eyes shine as brightly as ever; his laughter still fills a room. He is full of life.

I know I am blessed in many ways. My husband is a loving, steadfast man. My daughter is a real trooper. She is more mature than she ought to be. Did I mention my son has a seizure disorder? Enduring those would age anyone, yet she has stayed tough through it all. Furthermore, my son cannot be insulted or humiliated–at least not that he can understand. Autistics and Aspergers people are particularly prone to bullying, but I’m thankful my son doesn’t have a clue. His sheltered life protects him from such behavior. I can tickle and tease him about being a silly boy and he’ll think that’s funny. Oh, and we know we are so fortunate that though he is sensitive to noise, he is not like some autistics who can’t stand to be touched. It’s only been the last year or so that he’s stopped sitting in our laps when he wants to be hugged or comforted. He doles out kisses aplenty to charm us into giving him something–usually food. He’s been using charm and good looks to his advantage for years, at home and at school. It amuses him that he’s so much taller than I am. Sometimes he’ll even pat me on the head. Yet he’s a good boy–he’ll always bend down a bit so I can give him a kiss on the cheek. Every weekday I ache for him to come home; I long to see his smile.

Just as our son is a mystery to us, autism is still a mystery to science. Plenty of theories abound, but they still debate the cause. Some scientists point to the environment, some to genetics. Recent studies suggest advanced age of the father or obesity in the mother as possible causes (neither applied to us). We don’t have anyone with autism in either of our families. Autistics rarely breed. Cases of identical twins in which one has autism but the other one doesn’t are utterly baffling, given that they claim the same environment and same genetics. The diagnosis of autism has increased dramatically over the last several years, but that doesn’t necessarily indicate any sort of epidemic. Psychologists, family physicians, and teachers have become more capable of diagnosing the disorder. Also, autism was formerly a sub-category within the umbrella of Pervasive Developmental Disorders; now, the autism spectrum is the umbrella and it covers a larger group of people with developmental disorders, including Asperger’s syndrome which is like mid to high-functioning autism without the severe social and cognitive difficulties. Asperger’s is essentially a low level of autism.

Many researchers believe the cause of autism is so complicated that the combination of factors leading to it may be different for each child. Yet some parents stubbornly insist vaccines cause autism. Oh, people, get over it! Every credible study, and there have been several, disprove the connection. But parents want something to blame for the tragedy that has beset their child. One former British physician, Andrew Wakefield, was the instigator of the misconception that a link existed between the measles, mumps, and rubella (MMR) vaccine and autism. His 1998 research was deemed fraudulent and charges were leveled against him that his findings were based on a profit motive. A medical tribunal found him guilty of three dozen charges, including four counts of dishonesty and a dozen counts concerning the abuse of developmentally-challenged children. He was also stripped of his medical license. And yet parents will risk the health of their children by not getting them vaccinated–all based on the phony findings of a quack profiteer. You should know that a trend among physicians involves the refusal to treat non-vaccinated children. Accordingly, it guarantees that the physician you do visit also treats a high concentration of other non-vaccinated children, thereby increasing your child’s exposure to potentially deadly diseases.

All right, let’s move on to factors that help Danny to be calm and content. All children need structure and routine, but it is crucial to maintain a set daily schedule for autistics spanning their entire lives. Danny has the same structure and routine five days a week; his two weekend days also follow a certain schedule. Danny doesn’t want vacation–it just requires additional effort to adjust to the change. At his vocational center, which was established specifically for autistics, vacation time is limited. It was only after moving to his vocational center did we realize how sensitive he was to being in the company of younger children. Over-stimulation challenges every autistic; Danny feels more relaxed in the presence of calm people, that is, mellow adults. The staff people at his vocational center (underpaid saints) all possess calm, firm personalities. Danny is also more relaxed and less prone to outbursts when he has the same one or two staff persons attending him every day. Despite his mental disability, physical activity is important for him. He goes on walks during the day–he favors motion, including car rides, which keeps him calm or helps him to become relaxed when he has been agitated. Also, if we know we’re going to take him somewhere, whether it’s to the dentist or just downstairs, we try to give him advance warning. It makes him more accepting of the change and helps to keep him calm and happy.

Also essential to Danny’s well-being are his medications, though I confess we resisted their use initially. Anti-seizure meds became unavoidable once his seizures increased in severity and frequency. He also takes mood disorder drugs, which require diligent and timely dispensation. We hope to decrease his medication levels at some point–probably after his normal, current blast of testosterone eases. And I would be remiss if I didn’t give effusive credit to his public school system, which provided him with service starting in his preschool years. At first he was so shy, they couldn’t even test him. But the socialization and structure that special education supplied proved critical in helping Danny to adjust to the world outside his home. He loves school. He wants to go and do things, as long as it supplies the appropriate experiences to satisfy his specific condition. Then he needs to come home and unwind–eat a snack, watch a movie, bounce a small ball in his hand, walk around, rock in his favorite chair, and occasionally vocalize in his favorite vowel sounds. It’s a mix of singing, hooting, and yodeling–“hoodeling” as I sometimes call it. (When you’re the parent of such an odd character, you get to make up your own words. It’s true. Check page 743, paragraph two of the Book of Unusual Circumstances, 99th edition. Yeah, I made that up, too.)

The residents of Dannyville, our home’s nickname, have sacrificed a great deal for him. I quit a good job years ago to stay home with him after he became too much for my mother-in-law to handle. I certainly don’t regret the opportunity to be home and available for my kids. I don’t know how single-parent families cope with the overwhelming circumstances an autistic family member presents. All three of us put in a great deal of time with him; however, I began to wonder if I was one of his body parts or he was one of mine. It’s the reason I started blogging–it gives me something of my own. I’ve posted articles on various topics; though, it sure took me a long time to work up the nerve to discuss my Danny.

Autism is not a mental illness. It is a neurological impairment, a disability. Autism does not make a person violent toward others. Autistics might be high-strung or calm. My son is generally mild-mannered and good-natured.

Autistics are often described as low-functioning or high-functioning. That measures them on a sliding scale which refers to degree of intelligence and extent of autism. So a high-functioning autistic is a person with high intelligence and moderate to severe autism. A low-functioning autistic has low intelligence and moderate to severe autism (and consequently low emotional maturity). A person with Asperger’s syndrome has a mid to high IQ with low autism. Of course, a thousand combinations exist. All of these people are “on the spectrum,” as they are frequently labeled.

I now have a confession to make–since I first posted this article on my quirky son over a year ago, we have gotten rid of that lamp. No footballs of any color protrude from the top of any lighting fixture in our home. We still have the little green football, but the lamp is long gone–it was never a good reading lamp anyway. And we still lock up the ketchup. More importantly, my son has made gains in self-regulation. For a long time, he went from agitation to outburst easily. He has made definite strides in self-control, which has been wonderful for all of us. We’re not sure why he has improved. Perhaps he understands cause and effect better–he knows bad, painful things happen when he loses control and starts to hurt himself. One specialist told us that autistics often calm down to some degree once they’ve made it through puberty. We’re grateful, whatever the reason.

I suppose some parents wonder about their children, but I don’t spend any time thinking about what Danny would be like if he wasn’t autistic. Danny is Danny. He is what he is. We love him as he is. Scientists will tell you that autistics cannot love. Wrong. They just love us in their own peculiar way. My son pats me on the head and laughs. That is love.

©Judy Bruce and Hey Joood, 2023. Unauthorized use and/or duplication of this material is strictly prohibited. Photos may not be copied.