Looking at Autism with Humor, Faith, and Songs of the 80s
Frustrated by the lack of information online for adult autism or autism in teens? Are your eyes glazed over and your scrolling finger raw from endless searches and you still can’t find the answers you need? I feel your pain. Welcome to my blog. Please bear with me. I’m new to this. I don’t know how you landed on my page, but I’m happy you did. I hope you find the inspiration and support you need.
A little about me: I’ve been dealing with autism for twenty years but only recently put a name to this whirlwind, sometimes maddening, but certainly never dull life we’ve been blessed with. Hi, I’m Michelle, a mom of two young men on the spectrum, and this is our story.
Why a blog? And why now?
Trendsetter? No, not me. I’m more of the follower type, and so when the blogging craze began, I dragged my feet. Despite being intrigued by the idea, I never got around to it. It was on my to-do list—an ever-growing list of things I’ll do someday. Someday, when I’m not chasing the boy who never sleeps around the house. Someday when I’m not contemplating tethering my youngest to keep him from escaping our locked gate every time I turn my back (joking—well, sort of). But seriously, if you’ve ever dealt with a young Houdini, you know the idea crosses your mind way more than it should. Anyway. . . someday because I had stories that could turn your hair white and there never seemed time.
What this isn’t.
I’d be remiss if I didn’t include some of those hair-raising adventures I had before I knew what I was dealing with. However, this isn’t about little ones or young children on the spectrum. This is not how to manage your child’s meltdowns, not adventures in potty training, and not ten tips to get your toddler who only eats five things to try new foods … Been there, done that, and you’re obviously past that point, too, if you’ve come here. There are plenty of amazing blogs dealing with early childhood and the joys of dealing with younger kids on the spectrum. My story starts on a chilly January day in 2022. Little did I know everything I thought about my nineteen-year-old son would change. My understanding of him and his behavior was about to be flipped upside down.
I’d been homeschooling my oldest since he was three. He excelled in school (um . . . once I adapted my teaching to his learning style), but as a nineteen-year-old, he was having so much trouble transitioning to adulthood. I turned to the internet to dig for answers online. He had always been what we called “quirky.” More on that in a minute, but as I tried to define those mannerisms, Googling different aspects, my search kept returning to behaviors related to autism.
But my son didn’t fit the image of autism as I understood it.
When he was three months old, he said words like mama, car, and da-da. It wasn’t the typical baby babble, either. He held out his arms and called to me when I entered the room. He did everything months ahead of when he should. It didn’t matter if he would suddenly stop. I called it stubbornness, which set a precedent for all the behaviors yet to come. His behavior came in bursts. He’d do something new a few times, then he wouldn’t: walking, potty training, he could speak in entire sentences by the time he was one, and all that stopped as abruptly as it came on. Still, it happened. He must be some sort of genius, though, right? A super, stubborn genius.
In time, he eventually resumed doing all those things, and life would go on. Because he was homeschooled and I worked daily with him, he was reading by the age of three. He seemed to play well enough with other children, but looking back, I realize he initiated what others should, and then he’d sit on the fringes of the group and watch. He became “a little boss,” if you will. He wanted to boss me, his father, and especially his younger brother. I assumed since he was on target and ahead in other areas, it was his personality.
However, the older he grew, the more his quirks controlled his life (and ours). My son would only wear a particular brand/color of t-shirt (green) and only ate around five foods. He fidgeted with everything, and if a toy lasted longer than a few hours on Christmas morning, we considered it a success. He was never still, didn’t like to be held, and was on the move from the moment his feet hit the floor until bedtime.
It was during this time that I started searching for answers and seemed to hit on something when I discovered ADHD. We scheduled an appointment with the pediatrician, and he confirmed it. From that point on, I attributed most of his odd behavior to ADHD. The doctor prescribed Adderall. This helped with the inability to sit still and the lack of focus during school. However, other issues continued, such as the constant chewing on anything in his hands. He broke, peeled, and fidgeted with things until they were beyond repair. No matter how many times I punished him for swinging on the refrigerator door, he continued. One afternoon, I was fixing his lunch, heard a crash behind me, and looked around to see the fridge door and my son on the kitchen floor. Luckily, he wasn’t hurt, but to my knowledge, he’s the only toddler to single-handedly pull off a refrigerator door. When asked why he did these things, his answer was always the same: I don’t know.
As he grew older, my sweet, smiling little boy seemed to withdraw and grow sullen. He spoke in a monotone voice and seemed emotionally withdrawn. His behavior made less and less sense. He was okay with affection from family but wasn’t comfortable with strangers. In fact, I constantly had to remind him to make eye contact when speaking with others. If coached, he could do it, but he was clearly uncomfortable. He obsessed over different interests, drawing the same thing over and over again. He’d want to learn everything there ever was about a particular subject. Then he’d abandon it to move on to something new. Always moving, always on the go; that was my son.
Is this normal?
Teachers might have noted these things if he’d attended public school, but maybe not. His doctor never expressed concerns or mentioned anything unusual. When I shared my worries with others, I was told it was a stage and he’d grow out of it. Since his grades were above average and he didn’t struggle with learning, I ignored the tug that he didn’t line up with other boys his age. After all, isn’t everyone created to be unique in God’s eyes?
The real struggle began when he tried to transition into adulthood. We got nowhere when we encouraged him to drive and consider college or career choices (okay, it was more pleading, begging, and threatening). Those unique things about my son we thought were idiosyncrasies particular to him became huge obstacles he couldn’t overcome.
When Covid hit in his senior year, he was perfectly content to be on lockdown, stay home, and quarantine. It grew painfully obvious he differed from other teenage boys his age. After much research, I recognized signs of autism, but all the pieces didn’t fit together. I wasn’t convinced.
It couldn’t be autism, could it?
Apparently, our GP wasn’t convinced either because he seemed surprised I had concerns and thought it might be anxiety. Nevertheless, he referred him to a psychiatrist. The big problem was because of Covid, it took twice as long to get him evaluated—seven months, to be exact. Things didn’t move any faster after the diagnosis. And that brings us to that January day. The doctor talked with him for an hour, watched my son dressed in his green t-shirt (the same one he wore nearly every time we left the house—the same one I practically have to peel off him when he has a closet full of clothes). He responded to questions bluntly, chewed and fidgeted with his phone. While I witnessed my son struggle to express himself to the doctor’s questions, I sat astounded he couldn’t verbalize answers to questions I knew he knew. At the end of the session, the doctor pronounced him on the spectrum.
There was an enormous relief, if I’m honest, for myself and my son. We finally had an answer for all the questions we’d wrestled to understand for so many years. My oldest was referred to physical therapy at our local autism center. They talked about treatment and counseling sessions, and I remember thinking. Hmm… how many will he need? Three? Six? Indeed, not the eleven visits my insurance company dragged their feet to approve.
Looking back, I was naïve and had no idea what a journey we were about to embark on. My boys were grown. The hard part was over, right? Well, yes, and no. I got through those early years with a lot of time on my knees. And I’d need that same faith to get through the next year . . . and beyond.
There’s not much out there when your teen is diagnosed late. He wasn’t a child. I wasn’t dealing with tantrums/meltdowns and learning disabilities … not in the same way. The irony is that my youngest, who I had been most worried about as a small child, seemed to thrive at this point. He’s gifted with drawing and has bloomed as he broadens his knowledge of digital art. Not that I didn’t still have many concerns, but he appeared more functioning than my oldest.
Could I have two on the spectrum?
This was all so new, and it seemed I needed to focus on the one whose need was the greatest, at that moment. The physical therapy center we were referred to was not ideal. Unfortunately, they were more geared toward smaller kids. My son, who bristles at the notion of being seen as a child (even when he was), felt uncomfortable entering a waiting room where the decor was colorful, the seating was kid-friendly, and the TV played Princess Sophia to keep the children entertained.
Suddenly, we were thrown into uncharted waters. The sharks were circling. What would I do if something happened to my husband or me? What about insurance since he was now an adult? How functional was he, and what could he do without a driver’s license? There were so many terms and acronyms I’d never heard before. People spoke to me like I’d been dealing with this for years. Google wasn’t much help. I went from agency to agency and spent hours, sometimes entire days, on the phone, only to end up right back where I’d started. There were the day-to-day living challenges, but now I had the extra stress of getting help for him. What’s worse, I still had questions about my then seventeen-year-old. I needed to have him tested before he turned eighteen because of all the trouble I’d run into with my oldest. Imagine yourself trapped in the movie Jaws, and the shark has just taken a bite out of your surfboard.
Psalm 56:8 says, “You keep track of all my sorrows. You have collected all my tears in your bottle.”
During this time, I thought a lot about that verse. I cheered myself by imagining those industrialized-size tanks where they keep oil or water resources because surely mine had grown to that size over the years. This brings me to the reason I’m sharing our story now. Faith!
Honestly, I don’t know how anyone gets through those early days without it. Not knowing what I was dealing with all those years was nothing compared to transitioning my boys into adulthood. The world is a scary place. They weren’t babies I could protect anymore. Sure, navigating through childhood had been hard, but now we’re talking about lives, their futures. This wasn’t a stage they’d grow out of. I wanted to be their voice, but more importantly, I needed to help them find their own voices.
The good news is I found a center they both love. It took us eleven months to have a psychological evaluation for both. We have a diagnosis, and both are on the spectrum.
The first step is to talk to a general practitioner. Get a referral into a system that will do an intake and evaluation and then refer you for a complete psychological test. If you believe you or someone you love might be on the spectrum, I strongly encourage testing. The sooner the diagnoses, the sooner the treatment and support can be given. There are three levels of autism:
Level one is the highest functioning level of autism and includes those previously diagnosed with Asperger’s. This includes individuals with medium to high IQs who need support. They may struggle with conversation, organization, planning, and seem socially awkward. (*My youngest falls into this category.)
Level two is for those who still may have an average IQ but require substantial assistance. Sensory issues and social skills are more noticeable. (*My oldest leans toward this group.)
Level three requires the most care and is what most people consider classic autism.
You can find most of this information online. *It is important to note experts used these guidelines for support and understanding the level of care needed. Over time and with the proper therapy, the level of classification can change, although a person diagnosed with autism will always have autism.
We have filed for SSI (Supplemental Security Income) because of my son’s severe SPD (sensory processing disorder) and social skills. However, we were denied and are currently in the process of an appeal. (Dealing with government agencies needs its own separate post.) That being said, there are resources for adults, such as the DARS program (Division of Rehabilitation Services). They are great at helping with employment. All these things we are in the process of establishing for my boys.
My hope is to present a fresh perspective when dealing with autism. It’s a mixture of humor, faith, and 80s songs. Psalm 30:11 “You have turned my mourning into dancing.” (or singing in my case)
My boys will roll their eyes and tell you that at any given moment, I’m prone to breaking out in spontaneous song and belting out 80s tunes (although not limited to that decade). They cringe. They laugh. They think I’ve lost my mind. (Although, I usually have to pump my neck, flap my wings, and do my chicken dance for my oldest to crack a smile). He hates it because he has trouble understanding my need to be silly but loves it because he understands I’m reaching out to him.
Everyone’s story is different. I’m only sharing ours and trying to dispel myths I naively held true. Autism is a series of contradictions. The same child with an overload of sensory issues, who won’t wear anything but a particular type of clothing, will happily allow others to bury him in sand up to his neck. Eww! My son, who shouldn’t want anyone touching him because of an autistic diagnosis, loves to hug and kiss everyone when he leaves the room. They want love and affection but are often trapped inside their heads and don’t know how to communicate that. We are all created in God’s image, and it isn’t by mistake they experience the world the way they do. They don’t want to be tolerated, excused, or thought of as lesser because their brains function differently. They want to be accepted for who they are and ALL they can be. Please consider this my personal invitation for you to follow us on our journey.