Fiona’s StoryA millennial’s perspective on growing up with an autistic sibling

My Mom, the Locomotive

My mother is a force to be reckoned with. I always refer to her as a locomotive because that just about encompasses her strong sense of direction and drive to keep going, even under difficult circumstances.

Although Mom appears equipped for the hassles and pressures of raising the four of us, I cannot help thinking about how much she has carried as a single mother raising my autistic brother.

Please pretend I did not give her many headaches during my teenage years. Not that I have stopped. And pretend my two younger brothers have not since replaced me and ranked higher in teenage madness!

Mom calls my older brother “SS,” meaning “Special Son.” In my story, I have chosen to call him Hope.

How It All Started

From what my family has told me, Hope was a bright child who was doing very well in preschool.

Before we moved to Edmonton, Canada, he became seriously ill with a relentlessly high fever that took time to respond to treatment. By the time we arrived, he could not walk off the plane.

As a child, I blamed the plane. Somehow, I thought it had something to do with his illness. Looking back, I recognize that this was a little girl trying to make sense of something she did not understand.

Mom carried him off that plane instead of me—the younger one.

The next morning, he could no longer hold a toothbrush properly. Skills that had once come easily were suddenly difficult. After many tests and assessments over a long period, he was eventually diagnosed with autism.

I was only about two when we moved, so much of this early history comes from what my family has shared. What I came to know for myself were the highs and lows of growing up as an immigrant girl, raised by a single mother, with an older autistic brother.

As a Young Child

I hated some of Hope’s behaviours.

I remember the embarrassment of being with him in public because I felt he always disturbed the peace. He attracted attention, and I noticed the judging looks from other people.

I could not understand him. Sometimes, I did not want to try.

Not knowing better, I thought of him as a burden. His behaviours and the demands surrounding him felt like too much. As far as my young mind was concerned, Hope was stealing my right to have a playmate—not to mention my bonding and cuddle time with Mom!

I compared myself with friends who had cool big brothers, and it broke my heart to think I had somehow missed out. They got to play with their brothers. I sometimes tried to hide the fact that mine existed.

I worried about how others would view Hope and whether that would change how they viewed me. I certainly could not use his name to help pave my way into a popular clique in junior high. Many people there did not know about my brother, and I chose to keep it that way.

In elementary school, it seemed as though all my friends had older siblings who helped with homework and knew how things worked. I wanted that too.

I wanted Hope to play with me, study with me, and protect me. I wanted him to be the big brother I saw other children enjoying.

A child can hope, right?

I also resented the extra attention he received. I felt it took away from my time with Mom and left me somewhat underappreciated.

Of all the luck in the world, I thought, why was I the one getting the oldest child’s responsibilities while Hope appeared to receive the privileges?

Some days, I studied the suitcase hanging in Mom’s closet and wondered whether it was big enough to fit my brother. Then I could finally say, “Hasta la vista, baby!” and watch him get shipped off to Thailand, Australia, or anywhere else far from here.

That was my childhood imagination at work. I wanted a break. I wanted attention. I just did not know how to say those things.

As an Adolescent

As I grew older, I began to realize that some people find humour in taking advantage of someone vulnerable.

When Hope was approaching his teens, another child told him to remove his clothes and run around the neighbourhood. Hope obeyed.

He was trusting and often followed instructions without recognizing that someone might mean him harm.

It took Mom about three years to teach him to say no to unreasonable requests, especially from people who did not have his best interests at heart.

Unfortunately, once he learned “no,” he said no to everything.

It took several more years to work on that!

With time, I began to understand that Hope had not chosen the difficulties he lived with. They were not something he could simply stop doing because I wanted him to.

Still, understanding did not immediately make me comfortable being seen with him. I wanted to help, but sometimes from a distance.

It took me time to learn empathy. It took longer to put it into practice when doing so was inconvenient.

As an Adult

After turning eighteen, I became a “fully capable” adult who could care for Hope independently when needed.

That definitely relieved Mom. It also made the warning “Don’t grow up—it’s a trap!” feel rather accurate.

When Hope came home with his caregiver, either Mom or I needed to be there to receive him. We had to coordinate our plans. Sometimes, that meant cutting a day out short.

It was a sacrifice. But I was also glad I could do something useful for my brother and my family.

As an adult, I became proud of being responsible enough to care for Hope. I learned his routines, what might upset him, and what could help him settle. I could make decisions without needing Mom to explain every little thing.

I also began wondering more about what went on in his mind.

Did he know how much he was loved? Did he know that we noticed him and valued him?

I came to accept my brother as he is. I wanted to encourage him and keep reminding him that he was loved.

Meet My Brother

When settled, Hope can be a calm soul. He is handsome, full of energy, and has an extraordinary memory.

He knows everyone’s birthdays and basically holds a calendar in his head. Ask him the date, and he usually gets it right without hesitation.

Forget where you parked? Hope can lead you back to your vehicle. Lose your way? He often knows the direction home.

He has so many qualities that people may never discover if they only notice the moments when he is struggling.

For years, I was so busy wishing for a different kind of big brother that I did not give enough attention to the one I already had.

Understanding Hope’s Ways

Hope does not usually initiate conversations or socialize on his own.

He can struggle to put his thoughts into words. Ask him how his day has been, and he may say “uuuuhm” for what feels like thirty-two years.

Specific questions generally work better. So does giving him time.

When he becomes upset, he may have difficulty telling us why. As a family, we sometimes have to do some detective work.

Perhaps he wants to wear a favourite shirt again before wash day. Perhaps he does not want to go out with a caregiver. Perhaps he would rather stay home and pace for a while.

After a long day, tiredness or hunger can make things harder. Sometimes, instead of telling us what he needs, he stomps, jumps, makes noise, or tries to hit someone.

Those moments are difficult. We have had to learn his signs of distress and work with his support team to help keep everyone safe.

We do not always get it right immediately. Sometimes, understanding what he is trying to communicate takes patience—and another guess.

What Learning Can Look Like

With Hope, a useful new skill can come with an unexpected twist.

Mom taught him how to call for help in an emergency. A sensible safety measure, right?

Well, Hope sometimes began picking up the phone when agitated, calling the police, and hanging up without saying a word. Officers would then arrive to check whether everything was all right.

We had taught him how to make the call. Helping him understand when to make it turned out to be a separate lesson.

That is something I have learned about supporting Hope: you cannot always assume that the part that seems obvious to you is obvious to him.

Sometimes, you have to go back, break things down, and try again.

Team Hope

At the time I first wrote this story, Team Hope included Mom, four to five paid caregivers, a social worker, my two younger brothers, and me.

Together, we worked to include Hope’s strengths and interests in his routines and create opportunities for him to participate in the community.

One caregiver supported activities such as going to the gym, playing sports, attending cooking classes, and visiting the library.

Another helped him volunteer by preparing hot chocolate and snacks for people experiencing homelessness. That caregiver also supported him with paid delivery tasks.

Who knew my brother could grow up to have a job? Clearly, I still had a few things to learn about what he could do with the right support.

Another caregiver helped with getting ready for the day and, sometimes, for bed when Mom was away. This included grooming, making his bed, cleaning up after himself, and other daily routines.

There were also opportunities for swimming, bowling, attending youth services, watching hockey games, and having fun.

Mom coordinated his care, planned for his present and future, and kept track of all the things associated with his life and his team.

I helped with his care when I was home. My younger brothers helped as much as they could too.

Honestly, I do not know how Mom managed so much without another driver in the house. It was an unbelievable mountain of work.

Must be magic. Or maybe just regular, large consumptions of tea. Or awkward dancing.

Nothing About Hope Without Hope

Mom insists that Hope must be included in decisions about his care.

He understands more than people sometimes realize. Because he does not always say much, it can be easy for others to speak for him or assume he has no opinion.

Mom will have none of that.

We try to give him opportunities to express his preferences and participate in decisions about his own life. His communication may take time, but that does not make it less important.

We consider his physical, social, spiritual, emotional, and everyday needs, as well as the environment around him and the resources that support his life.

I am amazed at what can be accomplished when people come together, pay attention, and work towards a shared goal.

Hope and Me

I am better off for having Hope in my life, and I trust that he is better off for having me as his sister—even though I did not feel that way in the beginning.

Applying the golden rule to my relationship with him meant learning to treat him with the patience and consideration I would want for myself.

I had to move beyond seeing only the problems. I had to recognize his abilities, his interests, and the person he is.

My faith has helped me along the way. I have often needed God’s help to grow into responsibilities I did not feel ready for, and to find patience when mine was running low.

Hope needs support with many things. He also has much to contribute.

He is my brother, and he is the best.

I cannot change his diagnosis, but I can support him in using his strengths and enjoying the things that matter to him. I can keep learning how to understand him.

To anyone growing up in a family like ours: it is all right to admit that some days are hard. Loving your sibling does not mean you never feel frustrated, and your needs deserve attention too.

I did not begin this journey with all the patience or understanding I have now. I am still learning.

But I am glad to be in Hope’s life whenever I can.

And I am glad he is in mine.