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Siblings of Autism: Interview with My Son Spencer Barbera

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Autism Siblings: Growing Up With a Brother or Sister With Autism

What is it really like to grow up with a sibling with autism?

I can tell you what it’s like to be an autism mom. I can tell you what I’ve learned as a nurse, behavior analyst, and professional who has spent more than 25 years in the autism field.

But there is one perspective I can’t give firsthand: what it was like for my younger son, Spencer, to grow up with his older brother Lucas, who has moderate-to-severe autism.

Lucas and Spencer are just 18 months apart. Spencer was only 18 months old when Lucas was diagnosed with autism the day before his third birthday.

In this podcast episode, I sat down with Spencer to talk honestly about growing up as an autism sibling—from knowing the word “autism” when he was just three years old to embarrassment, helping his brother learn, challenging behaviors, protecting his own space, and eventually wondering what his role might be in Lucas’s future care.

Now Spencer is a physician, but having a brother with autism is still an important part of who he is.

His biggest advice to other autism siblings?

Own it.

Top Takeaways About Autism Siblings

  • Talk about autism openly and in an age-appropriate way rather than treating it as something that needs to be hidden.
  • Autism siblings can experience love, pride, frustration, embarrassment, worry, and protectiveness—sometimes all at once.
  • Let siblings be involved in positive, age-appropriate ways. They can be wonderful play partners, models, teachers, and advocates while still getting to be kids themselves.
  • Protect each child’s belongings, privacy, personal space, and physical safety.
  • Not every activity needs to include the entire family. Different children may need different experiences.
  • Take aggression and other unsafe behaviors seriously because they can affect the whole family.
  • Talk about future caregiving rather than silently assuming a sibling will eventually take over.
  • Being a sibling of someone with autism can help develop compassion, advocacy, maturity, and resilience.
  • Every autism sibling experience is different, so give children room to tell you what the experience is like for them.

Spencer’s Earliest Memories of Growing Up With Autism

Spencer really doesn’t remember a time when autism wasn’t part of his life.

When I asked about his earliest memories, he said that by three years old, he was already using the word “autism” as a normal part of his vocabulary.

At the time, I remember wondering whether I needed to sit him down and explain that Lucas had autism.

Then our babysitter told me, essentially, He already knows.

Autism was being discussed in our home. Lucas was receiving therapy in our basement. People were coming and going. Spencer was watching and listening to all of it.

We never really had one big “autism talk.”

It was simply part of our family.

I think there’s an important lesson there for parents.

Siblings notice much more than we sometimes realize.

Giving children simple, age-appropriate explanations about autism can help them understand why their brother or sister may communicate, play, learn, or behave differently.

The Autism Speaks Sibling’s Guide to Autism is one resource specifically designed to help siblings understand autism, their feelings, and their relationship with their brother or sister.

The Complicated Emotions of Autism Siblings

There is no single way a child is supposed to feel about having a sibling with autism.

Research has actually found both positive and challenging outcomes for siblings of autistic individuals, which is important because the experience shouldn’t be reduced to either “this makes siblings stronger” or “this is hard on siblings.” It can be both. (Research on autism sibling well-being)

Spencer loves Lucas deeply.

But that doesn’t mean every part of growing up together was easy.

There were times Spencer was frustrated.

There were times he was embarrassed.

There were times he was protective.

And as he got older, there were worries about what Lucas’s future would mean for his own.

Those feelings can coexist.

Is It Normal for Autism Siblings to Feel Embarrassed?

One of the things I appreciated most about interviewing Spencer was how candid he was.

When I asked if he had ever been embarrassed by Lucas, he didn’t give me the answer he thought I wanted to hear.

Of course he had.

One memory was from the pool.

Lucas was getting older, and I wanted him to begin using the men’s restroom instead of going into the women’s restroom with me. Spencer was with his friends when I came over and asked him to take Lucas to the bathroom.

Spencer got angry and refused.

Interestingly, after I walked away, his own friends basically asked him what the big deal was.

Looking back, Spencer could see the situation differently. But in that moment, being a kid around his friends, it felt like a very big deal.

I think parents need to remember that.

Embarrassment doesn’t mean your child doesn’t love their brother or sister.

Sometimes being a tween or teenager is embarrassing enough on its own. Add a sibling who may make loud noises, have difficulty with toileting, become dysregulated, or act differently in front of peers, and those feelings can become even more complicated.

We don’t need to make children feel guilty about those emotions.

We need to give them permission to talk about them.

Autism Siblings Can Be Part of the Learning

Spencer was involved in Lucas’s learning from a very young age and, in some ways, became a little “junior therapist.” For us, that was a positive thing.

He participated in some of my early verbal behavior teaching and even helped us determine whether words we were teaching Lucas were appropriate for children their age. As they got older, that involvement became much more natural—showing Lucas something on his iPad, getting him to go for a walk, or helping him navigate everyday situations.

Siblings can be wonderful models, play partners, teachers, and advocates. The key is keeping their involvement positive and age appropriate while letting them be a brother or sister first.

Protecting a Sibling’s Space and Belongings

Some of Spencer’s strongest childhood memories are surprisingly simple: Lucas getting into his stuff. He remembers a pair of Incredible Hulk hands he loved getting chewed up and coming home another time to find his bedroom and fish tank destroyed. Eventually, we put a coded lock on Spencer’s bedroom door, and that practical solution made a big difference.

Understanding autism doesn’t mean a sibling shouldn’t be upset when something they love is broken or their privacy is disrupted. Their room, belongings, and feelings matter too. Sometimes supporting autism siblings means finding simple solutions that respect the needs of both children.

Not Everything Has to Be a Family Activity

One of the best pieces of advice we received after Lucas was diagnosed was that the four of us didn’t have to do everything together. Spencer loved performing in musicals and plays, while sitting quietly through a long performance in a dark auditorium would have been difficult and not particularly enjoyable for Lucas.

So we learned to divide and conquer. Sometimes I did things with Spencer, sometimes my husband did, sometimes one of us stayed with Lucas, and other times we all did something together. It took away the pressure of trying to make every activity work for everyone.

For families raising children with very different needs, fair doesn’t always mean identical. Giving each child experiences that work for them can sometimes be better for the whole family.

When Aggression Affects Autism Siblings

Spencer also lived through periods when Lucas displayed aggression and self-injurious behavior, particularly during his teenage years. Even though Spencer was close to Lucas in age and size, he remembers how scary it could be when Lucas became extremely upset, hit himself, bit his fingers, or grabbed others.

This is one reason I don’t believe we should simply accept severe problem behavior as “part of autism.” We need to look at why it is happening, including communication, behavioral, environmental, and possible medical factors. In Lucas’s case, identifying and treating an underlying medical issue made an enormous difference.

Spencer pointed out that once the aggression was under control, Lucas had so much more freedom. He could go to restaurants, visit family, be out in the community, and safely participate in more activities. Addressing problem behaviors can improve quality of life not only for the person with autism, but for their siblings and the whole family.

Autism Siblings and Future Caregiving

As siblings get older, another question can become much more real: What happens to my brother or sister when my parents are no longer here?

Spencer said this concern has been in the back of his mind at different points in his life. As he went to college, medical school, and began planning his own career, things like where he would live, guardianship, and Lucas’s future care naturally became more real.

My husband and I have never wanted Spencer to feel that having a brother with autism meant he couldn’t go away to college, become a physician, live somewhere else, or build the life he wanted. I don’t think it’s fair to silently assume that a sibling will eventually take over full-time caregiving.

Future planning should be an ongoing family conversation. Siblings can play an important role in their brother or sister’s life without necessarily providing all of their daily care. The Arc has helpful resources for siblings and families thinking about future planning, advocacy, housing, and long-term support.

Two Brothers and the Crystal Ball Problem

There’s another part of Lucas and Spencer’s story that has shaped the way I think about autism and parenting. They’re only 18 months apart, and as toddlers their futures looked anything but obvious. Today, Lucas requires around-the-clock care and supervision, while Spencer grew up to become a physician.

I recently wrote about this in Newsletter #4: The Crystal Ball Problem because their story is such a powerful reminder that none of us gets a crystal ball. We can’t know exactly what a two-year-old will look like at 10, 20, or 30. What we can do is focus on what each child needs right now and keep working toward greater safety, independence, and happiness.

Read the full story of Lucas, Spencer, and the Crystal Ball Problem here.

Finding Support for Autism Siblings

One thing Spencer didn’t really have growing up was a group of other autism siblings to talk to. Today, there are more opportunities for children, teens, and adults to connect with people who understand some of the unique parts of having a sibling with autism or another disability.

The Sibling Support Project offers sibling-specific resources, including Sibshops, where children can meet other siblings, have fun, and talk about both the good and difficult parts of their experiences. The Autism Speaks Sibling’s Guide to Autism can also help younger siblings better understand autism and their feelings about it.

You don’t need to assume you know how your child feels. Ask them. Listen when the answer isn’t what you expected, and make sure they know that loving their sibling doesn’t mean they have to feel positive about every situation.

Autism Siblings Top FAQ

Every autism sibling experience is different. A child may feel love, pride, frustration, embarrassment, protectiveness, worry, or several emotions at once. Research has found both positive and challenging experiences among siblings of autistic individuals. The best approach is to keep communication open and give siblings space to be honest about their own experience.

Talk openly about autism in an age-appropriate way, listen to your child’s feelings without judging them, and make sure they have their own attention, activities, belongings, and privacy. It can also be helpful to give siblings simple ways to interact successfully with their brother or sister and connect them with other autism siblings when possible.

 

They certainly can. Spencer was involved in Lucas’s learning from an early age, and being a little “junior therapist” was often a positive part of his experience. Siblings can be great models, play partners, and teachers when the involvement is age appropriate, enjoyable, and doesn’t make them responsible for their sibling’s progress.

Absolutely. Feeling embarrassed, angry, frustrated, or jealous doesn’t mean a child doesn’t love their sibling. Spencer remembers experiencing some of those feelings himself, especially around friends or when Lucas damaged his belongings. Giving children permission to talk honestly about those feelings is important.

Parents shouldn’t automatically assume another child will eventually become the primary caregiver. Future care, guardianship, housing, finances, and support should be discussed and planned for over time. Siblings can remain a very important part of their brother or sister’s life while still pursuing their own career, relationships, family, and goals.

Having Lucas as a brother has undoubtedly shaped Spencer, just as raising two very different sons has shaped me.

Nearly three decades later, I still don’t have a crystal ball. What I do know is that our goal for every child in the family should be the same: help them become as safe, as independent, and as happy as possible.

Resources

Want to Learn how to Increase Talking & Decrease Tantrums in Children with Autism or Toddlers Showing Signs?

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