This blog post has been adapted from OAR’s resource “Life as an Autism Sibling: A Guide for Teens”.
When your sibling has autism, you have a different kind of sibling relationship. While it can be enjoyable and rewarding, you may also experience challenges and feelings that are tough to deal with. What’s most important to remember is that there are others out there who understand what it’s like to be in your shoes.
Your friends, classmates, or strangers probably won’t have very much experience with autism, and might not know how to react to someone who has it. You can help people feel more comfortable around your sibling by explaining a little about autism.
People that ask about your sibling will probably want an explanation of their particular behaviors; it’s what they’re going to notice first. Do they rock back and forth when a room becomes too noisy? Do they repeat movie quotes because it makes them happy? You will probably understand your sibling’s behaviors better than most – so tell people what you know.
Not everyone realizes that autism is different from one person to another. Depending on what they’ve learned before, they might think all people with autism are “really good at math,” or “never like to be touched.” While these may be true in some cases, try letting them know that each person with autism has unique strengths and challenges.
Keep explanations of your sibling’s autism short and sweet. Some people may also ask questions that seem rude or way too personal; remember that you don’t have to tell anyone anything that makes you feel uncomfortable.
Autism Basics – help friends understand autism by breaking it down for them. Some things you could mention are:
- The full clinical term is Autism Spectrum Disorder (ASD). ASD affects a person’s brain development, which leads to a number of challenges in areas such as: behavior, communication, and forming social relationships.
- “Spectrum” describes the range of abilities and difficulties someone with autism has. It helps account for all the different types of autism out there.
- There are more than 2 million people diagnosed with autism in the U.S. alone.
Dealing with a Different “Normal”
You and your sibling with autism might not have a typical relationship. It’s not unusual to feel a sense of loss, particularly when you see your friends doing things with their siblings. Sometimes you may feel like you’re the only one without that normal sibling experience, and wish your sibling didn’t have autism. You’re not the only one who feels this way.
The relationship you have with your sibling can still be enjoyable, and it will get stronger if you show signs that you care about them. For example, if your sibling has achieved something, give them a high-five or tell them what a great job they’ve done. If your sibling is really into something (like films or the weather), try expressing some interest and having a conversation about it. Your brother or sister may not be able to respond in the same way that your friends’ siblings do, but your gesture will be appreciated.
Additionally, consider common interests you share with your sibling and put them into action. Even if you can’t think of examples right away, there are likely to be some. Maybe you both enjoy the same kind of music, so you two can spend time together listening to your favorite singers or bands. It might also be good to do something with your sibling that they really enjoy. Perhaps going for walks is one of their favorite things – why not offer to accompany them on one? These sorts of activities might not be the kind your friends enjoy with their siblings, but that doesn’t mean they’re not just as worthwhile.
Parents, Time, and Expectations
Your sibling with autism can demand a lot of your parents’ time and attention. As a result, you may have more responsibility and independence, which can be great. Sometimes, however, you might just want a bit of recognition. It can hurt if your parents don’t seem to notice when you’ve achieved something important to you, such as being selected for a role in the school play or making a sports team.
Your parents might be busy with your sibling, but they still want to know how you’re doing. Find a good time to approach them and talk about how you’re feeling, even if it may be tough to do. You’ll almost always feel better for it afterwards, and your parents might surprise you with how much they actually do notice.
If there’s a special event you want your parents to attend, try talking to them about it in advance. It will give them extra time to plan. This is also good to do if you just want to spend some time alone with one of them. If you really want to go prom dress shopping with your mom, pick a time with her to do so. If you want to go to a ballgame with your dad, find a good weekend and suggest it to him.
Talking to parents about how you’re feeling can be tough. Here are some tips that might help you get through some of those discussions:
- Know what you’re going to say – Having a plan keeps you from getting sidetracked during a discussion. It helps to write it out on paper, even if you’re the only one who’s going to read it.
- Think about the outcomes – Try to imagine what your parents might say back to you. That way, you can be ready to answer questions and respond to their feelings, too.
- Remain calm – It’s easy for emotional discussions to get a little heated. If everyone keeps a level head, it will be easier to say what needs to be said.
- Be honest – If you can be straightforward about how you feel, you’re going to get more out of a discussion. Be clear, and then listen to what your parents have to say. You’ll understand each other better and be able to come up with a solution.
Meltdowns can have many possible triggers, but they usually occur when people with autism are really frustrated. To relieve that stress, they might do things that look like the temper tantrums you associate with young children. However, when you see someone older behaving in that kind of way, it’s a whole different story. Some family trips may get cut short because your sibling becomes overwhelmed and can’t handle a particular situation. You might have to avoid other activities altogether. Most siblings can’t help feeling embarrassed or frustrated when outings don’t go the way that they should.
These challenges and feelings may be hard to come to terms with, but instead of focusing on negative experiences, try picturing times when things have gone right. Maybe your sibling likes going to see musicals or taking trips to theme parks. A small number of bad experiences tend to stick out, but you likely have had some great times together. And there are many more to come!
If you want to help make outings go more smoothly, try discussing a game plan with your parents. Maybe you can make sure your sibling’s environment is safe if they have a meltdown, or reassure onlookers that your sibling’s behavior is just their way of expressing frustration.
5 Ways to Deal with Embarrassment:
- Remember that everyone gets embarrassed – Most people’s siblings embarrass them, whether they have autism or not. You are not alone in feeling this way.
- Surround yourself with good people – Real friends will make you feel better, rather than embarrassed about your sibling – even during meltdowns.
- Take a different perspective – Most embarrassing incidents with your sibling won’t seem as bad a week later. Even in the heat of the moment, ask yourself if it’s really that big of a deal.
- Make it a funny story – Some autism related stories your family tells may have once been embarrassing incidents. Over time, however, you’ll learn to smile about them.
- Let it go – Embarrassing moments are temporary; your sibling is not. They might behave a little strangely, but they’re still your sibling, so hold your head high.
Finishing high school marks a step into adulthood, and can spark thoughts about your future – including how your sibling with autism will fit into it. In the short term, you may worry about how they are going to react to you not being around as much and vice versa. In the long term, many siblings find themselves torn between wanting to care for their sibling with autism when their parents become unable to, and wanting more independence in the future.
If you’re thinking about moving away from home (to travel, attend college, start a new job, etc.), you may want to make keeping in touch with your sibling part of your routine. A phone call or video chat every so often is likely to help your sibling (and you) adjust to the change, making the distance between the two of you easier to deal with.
When thinking about your future role in your sibling’s life, there are a lot of things for everyone in your family to consider. Every situation is different, partly depending on whether your sibling will live independently or require some form of lifelong support. More importantly, it’s a case of how much responsibility you would like to take on for your sibling. Many teenagers that want to break away from their families feel guilty for not being more involved. However, it is essential to acknowledge that your life is your own; you don’t have to be responsible for your sibling, and no one should expect you to be.
It’s important to have an honest conversation with your parents about the future if you’re feeling worried, even though it may be hard. Together, you can create a plan, whether it involves you or other support services, so everyone feels comfortable with what to expect in the years to come.
Teen Sibling Resources to Check Out:
- SibTeen – A Facebook group just for teenagers who have siblings with disabilities to talk, swap stories, and exchange advice.
- Sibshops for teens – A support group that offers fun and relaxing breaks for siblings of kids with disabilities. Check if there’s one in your area!
- OAR’s Resources – Have more questions about autism? Check out OAR’s site for autism information and other helpful sibling resources.
Other Sibling Resources:
For parents: “Brothers, Sisters, and Autism: A Parent’s Guide to Supporting Siblings” outlines what mothers and fathers can do to support children who do not have an autism diagnosis. The topics range from dealing with perceived discrepancies fairly to facilitating a positive relationship between siblings. It can be read from start to finish or used as a reference tool to troubleshoot problems as they arise.
For children: “Autism, My Sibling, and Me” is a colorful workbook specifically designed to engage young children. A host of cartoon characters accompany children as they learn about what autism means for their brother or sister. The resource also aims to guide young siblings through any autism-related questions and concerns they may have, offering fun ideas for activities that can help them deal with potentially stressful issues.
OAR’s “Autism Sibling Support” initiative offers guidance for young children, teenagers, and parents on how to productively address the ups and downs that may arise for individuals who have a sibling with autism. The Life as an Autism Sibling: A Guide for Teens resource aims to not only validate siblings’ feelings and provide a sense of comfort in knowing that they are not alone, but also offer practical and age-appropriate guidance on how to address some of the difficulties they’re likely to experience. You can order or download a copy today for more information!