From as far back as I can remember, Skyler has always expressed himself by using his hands.
The most common of his ‘gestures’ is open hand smacking of walls, cupboards, doors, counters, people, etc. Basically, if he could reach it, he would hit it.
Hair pulling was his second favorite method of contact. Oddly enough, it often wasn’t done to gain the attention of the person on the receiving end of his torture, but simply because he liked the texture of the strands of hair between his fingers.
What began as a predominately innocent method of communication by a small, unassuming boy, has turned into an aggressive and often times hurtful demonstration of what I assumed was overwhelming frustration from being non-verbal.
Unable to use his voice to express pain, sadness, happiness or hunger, out of necessity, Skyler developed his own form of communication – which unfortunately is in a language that none of us clearly understands.
The biggest challenge with Skyler’s physical outbursts, particularly as he’s aged and grown in stature and strength, is how little they actually reveal about what he needs or feels. Instead, the incredible noise and chaos tests the limits of my patience and forces us to play an endless game of charades where there is never a winner.
As the minutes of aggression turn into hours, I tear up witnessing the heightened irritation building in his body. My child is literally begging me to decipher what is ailing him and I feel like I’ve failed him yet again because I have no idea what to do or how to intervene.
Over the last 17 years, I’ve frequently questioned whether there may be another reason for Skyler’s seemingly random outbursts of anger.
I’ve remained determined to crack the code behind his rage and find a way to communicate with my son.
But, with each suggestion or theory I proposed to every ‘expert’ I could find, I was always told the same thing, “Oh, negative behaviors are just part of autism. It’s likely just his form of stimming. The only way to calm his body down is with medication.”
Sadly, that has become a universally acceptable explanation for any meltdown or concerning behavior of children on the autism spectrum and that’s just not fair. Our kids are very unique and to be given a cookie cutter treatment approach for what’s happening in each of their bodies and minds is troubling.
Painting all autistic individuals with the same brush is irresponsible and prolongs parents from actually gaining true insight that can be helpful to better connecting with our kids.
For many years, I admittedly bought into the theory that Skyler was perhaps stimming and frustrated and kept telling myself, if I was Skyler and had spent my entire life unable to utter a single word all while people continued misunderstanding what I was needing or wanting, I’d probably lash out too. After all, being physical does help him garner our undivided attention, so in theory, he is getting what he may sometimes want.
Based on the aforementioned ‘expert’ advice and considering it was our only available course of action, we started Skyler on some behavioral medications, with minimal benefit visible over several years of manipulating doses and brands.
My intuition repeatedly told me keep digging. Skyler NEEDED me to keep searching.
I owed it to Skyler to find the root cause of his irritability – and frankly, the survival and mental health of our entire family depended on it.
After years of research, demands for third and fourth opinions and daily prayers, we finally got an answer in 2018 from an out of state Gastroenterologist who specializes and treats only patients with autism.
Immediately following Skyler’s colonoscopy and endoscopy, the physician called my husband and I back to discuss his findings. When he reported that Skyler’s intestines and insides were much worse than he predicted, I burst into an ugly cry.
The physician further explained that, for the bulk of his life, Skyler had been suffering greatly from ulcers stretching from his throat down to his rectum, most of which also coated the majority of his intestines. He diagnosed Skyler with Ulcerative Colitis (an inflammatory bowel disease) and Esophagitis and stated that the conditions have likely always been present but worsened as Skyler aged causing him great pain and anguish, specifically the last few years.
Finally! There it was – an explanation for many of the aggressive behaviors, incessant banging, property destruction and the all-too-frequent constipation and choking that seemed to be completely out of Skyler’s control.
My tears and sadness quickly turned to irritation and shame.
WHY did none of the medical community take me seriously when I routinely referenced his frequent constipation and requested a colonoscopy (only to be dismissed as an overbearing ‘mom doctor’) many years earlier?
WHY did I frequently lose my mind and scream at him to stop the banging and hitting? He was just trying to help us understand in the only way he knew how… acting out and inflicting his internal pain outward onto us and our home.
WHY have I let his therapists discuss his behavioral issues in front of him each day when they brought him to my car? I imagine he badly wanted to scream “I’m not a bad boy, my stomach hurts and I’m suffering!”
I was emotionally distraught thinking about the years of distress and misery that were overlooked for poor Skyler.
Similar to discovering he had autism, we must take this additional diagnosis day by day as well and learn as we go. We still have good days, bad days and extremely tough days, but at least we are getting better at identifying whether his behaviors are gastrointestinal related.
Everyone who interacts with Skyler daily has become more observant of his mannerisms which indicate stomach discomfort and know what to do to help ease his suffering. The ongoing goal is to teach Skyler more appropriate and less harsh methods of non-verbal communication.
Reflecting back on the past eight to ten years, my biggest regret is lumping behaviors, mannerisms, level of competency and lack of milestone accomplishment (like toilet training) under the ‘because of autism’ umbrella. Autism is a neurological disorder that often has comorbidities associated with it – like GI disease.
No pun intended parents, but trust your gut! Autism isn’t always to blame!