Navigating Life with ALS and Autism: The Broken Care System

Recognizing the Pattern

When my first daughter was two years old, she could count to twenty, name all her shapes and colors, and play independently for hours. She was brilliant. Special. Yet, I noticed the patterns. The way she screamed when sunlight hit the car window at the wrong angle, as if it burned her skin. How she flapped her hands and spun in circles, lost in her own world. Every morning became a battle over textures, colors, and the unpredictable nature of the day.

I knew these patterns because they were mine, too.

A Diagnosis That Explained Everything

When doctors diagnosed her with autism, it felt like excavating layers of my own life. The unexplained discomforts. The constant overwhelm. For years, I had learned to mask, adjust, and fight through a world that never seemed to fit. Unlike her, I had no diagnosis, no understanding—just endless labels. Difficult. Dramatic. Overly sensitive. Bitch.

Then ALS Took What Little Control I Had Left

The world was already inaccessible to me as an autistic person. However, with ALS, the barriers multiplied. It wasn’t just about bright lights or scratchy fabrics—it became about needing someone to physically move my body, help me eat, and assist me with breathing. My independence wasn’t just chipped away; it was stolen outright. Meanwhile, the same world that had ignored my needs as an autistic person continued to fail me as a disabled adult.

Autism support in Ontario is nearly nonexistent. The Ontario Autism Program provides scarce assistance, and many families still struggle to access meaningful support. As a result, after a lifetime of unmet support needs, I had to raise a child with the same struggles, somehow meeting her needs when I couldn’t even meet my own. The cycle continues. The system remains broken. And there is no end in sight.

Dehumanization in Survival Mode

Living in a constant state of survival changes a person. It wears them down, strips them of softness, and replaces patience with frustration. Every call unanswered, every no-show, every moment of neglect chips away at dignity and hope.

I used to think I was resilient. Now I know I’ve just hardened. The system has done that to me. The constant fight to be seen, to be helped, to be treated as a human being has left me volatile, impatient, and exhausted.

Blaming the People the System Has Broken

Now, people whisper about me. I have a reputation. No one wants to work for me. In their eyes, I am difficult. Demanding. Angry. Somehow, I am always the problem—not the system that failed me.

But how could I be anything else? I have spent years being neglected, forced to beg for my basic needs, watching my home fall apart around me, my body fail, and the people I depend on treat me as if I am disposable.

Ultimately, the system breaks people. And when it does, the world only blames the person it has broken.

Managing My Own Care: A Relentless Battle

Managing a team of caregivers isn’t just about receiving care—it’s a full-time job. I advertise, interview, hire, train, handle payroll, and navigate endless bureaucracy—all just to meet my most basic human needs. Without this effort, eating, using the bathroom, or even getting into bed becomes uncertain.

The Emotional Toll of Unreliable Care

This constant responsibility does more than exhaust me—it traumatizes me. Over the years, I have lost count of how many caregivers no-showed on their first day. Just recently, one applicant begged for another chance after failing to arrive for her first scheduled shift. I already knew how it would end, but I gave her the opportunity. Unsurprisingly, she didn’t show up. The cycle repeats. The system remains broken.

Meanwhile, I endure panic attacks and a constant state of fight-or-flight because I never know if I will have someone to help me. Some days, I hold my bladder for hours because no one is there to assist me. Yet after all this, I must also be a parent—exhausted, drained, and frustrated, while still trying to provide stability for my children. The cycle continues. The system remains broken.

Home Care: A System That Strips Away Dignity

Government-funded home care services fail at every level. Government-funded home care fails at every level. A CBC News report highlights the ongoing crisis in home care services across Canada, exposing the system’s many failures. Many workers arrive late, rush through tasks, and leave before completing essential care. Some treat caregiving as an impersonal duty, showing little compassion for the individuals they serve. Shockingly, one worker even yelled at me to eat faster, as if my need for food was an inconvenience.

When Caregivers Lack Compassion

Nadine, a caregiver I once thought was my friend, laughed about refusing to clean for other patients, assuming I was laughing with her.

“It’s great because my services are so much shorter. I usually just have time to sit in my car.”

She refused to wipe crumbs from the table or counter, insisting that cleaning wasn’t her job. Eventually, I could no longer tolerate her lack of compassion, so I canceled her shifts. It also wasn’t her job to skip her appointments, but she had no problem being paid to do that.

Necessary Changes

Compare this to an occupational therapist who briefly worked as my caregiver. She understood accessibility, praised my ability to create systems, and recognized my organizational skills—qualities others had criticized due to their lack of training in sensitivity and empowerment.

For real change, we need:

Higher wages and better training for personal support workers to ensure quality care. The Canadian Union of Public Employees (CUPE) continues to advocate for increased wages and better working conditions for PSWs, which could directly improve the quality of care for disabled individuals.

Reliable and consistent caregiving to prevent constant disruptions.

Clear job role definitions to eliminate confusion between unions and agencies.

Increased financial and structural support for hiring and retaining caregivers.

Dedicated cleaning services for disabled individuals who cannot maintain their homes.

Conclusion

Living with ALS isn’t just about the disease—it’s about navigating a system that is fundamentally broken. Care should not be left to chance, unreliable funding, or workers who lack proper training. It should be a right, not a privilege.

Until systemic changes happen, the cycle will continue. The system will remain broken. And once again, the world will keep blaming the people it has shattered.