Autism Rages- 10 Years Later

                              Tim at 20                                                      Tim at 30

Ten Years Later…

Tim was 15 when I started this blog. Back then, I just needed a place to write about his rages—somewhere to process everything we were going through. I don’t know if anyone ever read those early posts, but writing them helped me breathe.

Now, Tim is 30.

At 15, his face often bore the marks of his own hands—scratches, hits from episodes we couldn’t predict or understand. His rages were frequent and intense, and we lived on edge. Redirecting him was constant. He seemed to be seeking something we couldn’t identify. We didn’t know it at the time, but much of his behavior worsened when he was on Risperdal. It affected him profoundly, both emotionally and physically. One of the side effects was tardive dyskinesia, which caused him to spasm. It was terrible, and he only stayed on this drug for about 2 months, because it was obviously making a negative reaction for him. 

That period was terrifying.

Eventually, we were referred to a psychiatric clinic for teens and adults with special needs. That referral changed our lives. We still see the same psychiatrist 3–4 times a year. She helps us manage his medications, understand what’s going on, and most importantly, helps us help Tim live the best life he can.

Where Things Are Now

These days, Tim’s rages are rare and mostly occur at his day program, particularly in the mornings. There’s a theory that the pressure shifts during Calgary’s chinooks might trigger headaches or discomfort. It’s possible. At his group home, though, these episodes are almost nonexistent.

Recently, I came across a TikTok creator who described rages in autistic individuals as similar to seizures—sudden bursts of electrical activity the brain can’t control. That analogy really resonated with me. I’m not sure if there’s scientific evidence behind it, but it’s something worth exploring. Tim has been on an anti-seizure medication since his teens, which coincides with when the rages first became overwhelming.

The Group Home

Yes, group home. Tim moved into one when he was 27. I’ll be honest: it was one of the scariest decisions we’ve ever made. The “what ifs” were endless. What if he didn’t understand? What if he didn’t like it?

But the timing felt right. My husband and I were in our late 50s, mentally and physically exhausted from years of caregiving. We barely knew if we were coming or going. I often wondered whether working full-time all those years made it harder for Tim—but that’s a road I try not to go down.

His group home is run by an experienced agency and came about through a connection with a former classmate of Tim’s. They were starting a new home in Calgary, and Tim was chosen as a roommate. Both young men have what I refer to as “intense” autism. I know that’s not a clinical term, and it may not sit well with everyone in the autism community, but it describes what we’ve lived. Tim’s home now includes three men, all with similar support needs.

He’s been there for three and a half years.

The Pros

• We have time again. Even though we visit up to four times a week, we now have the space to do things for ourselves—read, rest, recover.

• Tim actually likes it. He waves us off when it’s time for us to leave. He enjoys the independence of his own space.

• He’s well-liked. Most of his workers genuinely enjoy him and understand his rhythms.

• His personal care has improved. His bathroom routine has improved to the point he never wears protective underwear. 

The Cons

• Care isn’t always up to our standards. His new mattress was ruined early on because no one put a cover on it. His toenails and fingernails go untrimmed unless we remind them—something crucial, because during rages, he may scratch himself.

• The commute. The home is 25 minutes away, which means each visit takes at least two hours.

• Inconsistent staff. Holidays and weekends bring casual workers who don’t know the residents well, which can lead to avoidable incidents. We try to visit more on those days to provide stability.

Understanding Rage

I still try to understand what triggers Tim’s rages. Here’s a summary from OpenAI that captures what might be going on. The bolded points are the ones I suspect apply to Tim:

• Sensory Overload: He may experience heightened sensitivity to sound, light, or other stimuli, which can overwhelm him and trigger distress.

• Emotional Dysregulation: Intense emotional reactions are difficult to control, especially when communication is a challenge.

• Communication Difficulties: Tim often struggles to express what he needs or feels, and that frustration can build into a meltdown.

• Changes in Routine: Even small disruptions can feel catastrophic for him.

• Underlying Medical Conditions: Things like headaches, GI issues, or even seizures might be contributing to his outbursts.

• Stress & Anxiety: Life can be overwhelming for him in ways we’ll never fully understand.

• Catastrophizing: Tim may dwell on imagined worst-case scenarios, adding to his distress.

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I don’t have all the answers. But I have love, patience, and a fierce desire to give Tim the best life possible. Writing helps me process everything, even if no one reads it.

Thanks for being here, even just in spirit.

— Still learning, still loving.