The side of autism you don't see often

April 22, 2019
PHOTO: Lindsay Moore (Fabulous Occasions)

Each day during National Autism Awareness Month we’re exposed to various facts and figures regarding autism, along with endless “feel good” success stories to spread. Sensory-friendly events are often abound, many of them targeting preschool-aged children who need the lights dimmed or sound lowered to enjoy various community activities. Lurking in the shadows of awareness is the reality behind severe autism. There is a tremendous range of symptoms within the autism spectrum, and with that in mind, I’ll give you just a glimpse of what severe autism looks like in my house.

We once had a bouncing preschooler who didn’t speak, but happily attended many of these sensory-friendly events. People would notice something was “different” about him, but as we carried our screaming, kicking child out of the zoo, most people would assume this was a typical, age-appropriate temper tantrum. Now, Kellen is 9 years old and rapidly approaching my size. The looks have changed, along with my ability to physically carry him to a safe place.

People aren’t quite sure how to react in particular situations, and I don’t fault them for that. They’re not sure what they’re seeing, because our society focuses on the special needs children who win homecoming queen, who sing the national anthem at the baseball game, who make it to college against all odds. Perhaps it’s too painful to see the reality of the challenges faced by severely autistic individuals and those who love them.

I’ll give you an example regarding the difference in reactions I’ve seen. We routinely frequent Starbucks, and Kellen simply lost control of his emotions on one ocassion. We were trying to calmly leave when he went into full thermonuclear meltdown mode and threw himself onto the floor in the middle of the doorway. As you can imagine, all eyes were on us. Not a single person offered to help, which was fine because I didn’t particularly need any. But they all continuted to stare. In amazement? In annoyance? In shock? All of the above? Eventually, we made it to the car in one piece, but I often wonder what those people thought they had seen.

Fast forward two weeks later, and we’re in the same Starbucks. Kellen had an upset stomach, and unexpectedly vomited in the middle of the store. I quickly rushed him to the patio, and before I could even assess the situation I had a handful of people bringing me napkins and wet paper towels, asking if there was anything they could do. It was a shocking contrast to what we’d experienced during the last incident. This is because a lot of people know how to help a mom with a puking kid, but few know how to help a mom managing a severely autistic child.

So, I’ve made it my mission to keep severe autism as part of the conversation, both in research (see my previous blog) and in my daily, personal life. We try to make it to the autism-focused events as a family so people can see how autism can be more than what is shown on TV or online. Kellen’s autism at its worst can involve elopement/wandering, aggressive and self-injurious behavior, unexplained gut issues and extreme emotions. We have our doors locked at all times to make sure he’s safe. He has broken TVs, furniture and numerous windows. We have holes in our walls from meltdowns where he forced his head through the sheetrock. We also now have gymnastics mats on several walls in an attempt to prevent him from hurting himself when his emotions get out of control. Kellen routinely has a bruise in the center of his forehead from hitting his head in frustration against a wall, his knee and sometimes me.

We’ve seen geneticists, neurologists, psychologists, psychiatrists, gastroenterologists … the list goes on, and we’re still charting the best course for him. You see, there is no treatment plan for severe autism. As an autism researcher, I work every day to change that, especially for those with significant challenges related to the medical and behavioral symptoms of autism. In our home, Kellen is our only guide on this journey into the unknown, and we’ll continue to do everything in our power to give him every ounce of happiness and opportunity in his life.

Just when we think everything is falling apart, Kellen does something amazing. The boy who didn’t utter a word for years now yells for “mama,” “daddy” and his sister, Larkin, every day. His favorite place in the world is Target (he might’ve gotten that from me), where I famously used to carry him out in meltdown mode. Now, he can go in and shop for his preferred toy and endure the checkout process. Just this past fall, we discovered he can type on a keyboard, which opens a whole new world of potential for him.

I would like for my readers to take a few things from this blog and apply them if they encounter a family with a severely autistic individual. I completely understand the desire to stare at us. If we’re dealing with a meltdown, I’m not watching you and frankly don’t care if you’re staring or not. But, when we’re making it through our morning in a happy, albeit very loudly, manner with a lot of bouncing involved, I see you staring. I have time to take a breath to watch you. If you notice me noticing you, you quickly look away as if we don’t exist. Well, we definitely exist, and let’s be honest – it’s really hard to ignore us.

So, here’s what I ask. Don’t be afraid to stare – that’s totally fine. I understand you’re curious, and I’d much rather have you absorb us in all of our glory instead of ignore us completely. But try smiling. This is Kellen’s version of happy, and this is our normal. So stare, smile and accept. Most importantly, talk to your kids about what you saw. Don’t let them grow up to be afraid of people who are different. We’re all in this together, after all.

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Ruth Ann Luna, PhD

Dr. Luna focuses on research and development of real-time PCR and next generation sequencing technologies for application in microbial metagenomics. Dr. Luna holds an interest in clinical study design as well as correlation of shifts in the microbiome with changes in disease state. She is also...

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