Empathy in Action: How to Support ASD Siblings
15 practical tips for supporting the neurotypical child in your family.
I grew up as the younger sister (by two years) of a brother with undiagnosed Autism Spectrum Disorder (ASD). ASD was not a recognized diagnosis at the time (1970s), but the effects that my brother’s impairment had on me are the same ones that affect ASD siblings today.
Sibling relationships play an enormous role in a child’s developmental growth. Often, they are a child’s first exposure to a social network and therefore, become the foundation for a lifetime of social interactions.
But when a special-needs situation affects sibling relationships, there can be both positive and negative long-lasting consequences.
This article contains 15 tips I collected that are based on both my personal experience growing up as an ASD sibling and also on the research that I’ve done as an adult. My hope is that the tips will provide some insight into the inner thoughts and needs of the ASD sibling in your life and enable many positive long-lasting effects.
Tip #1. Give them age-appropriate information
It’s crucial to explain ASD in age-appropriate terms.
One of the points that your explanation could include is that, unlike a lot of disabilities, ASD is hard to detect. You might compare its invisible nature to the experience of seeing a seated person, thinking that they are simply seated in a chair, and then realizing later that they’re actually in a wheelchair.
Or compare ASD to a particular toy that your ASD sibling is fond of (or a book or a piece of sports equipment or whatever feels age-appropriate). Imagine together that the toy has an inner part that isn’t connected properly.
Explain that no one would know that there’s something wrong with the toy because it appears normal on the outside. But in reality, the toy doesn’t function like other toys because one of its inner parts is connected in a different way. Finish the conversation by comparing ASD with the toy that has the misconnected part.
Tip #2. Don’t be a superhero
If you’re constantly fielding complaints about the way you’re handling your ASD child’s behavior, make it clear that you don’t have all the answers. Explain that ASD is a fairly new diagnosis and that you and the professional psychology community are trying your very hardest to do the right thing.
Point out that you’re keeping up with all the latest information about ASD behavior. (It’s good for your child to see you adapting to change.)
By admitting this, you’ll be offering a more realistic view of yourself as someone who is coping and learning on a day-to-day basis. You’ll also be sending the message that you are not a superhero whose achievements are unattainable for the average person.
Tip #3. Encourage appropriate participation
There’s a fine line between the ASD sibling who helps during family emergencies and the ASD sibling who takes on the responsibility of a full parenting role.
Try to have an ongoing awareness of this very fuzzy line. Here’s an example. A helpful ASD sibling is the one who stands-by ready to help during a grocery store meltdown, while the parent executes a calming technique that has worked in the past.
Conversely, the ASD sibling who has taken on too much of a parenting role is the one who applies the calming technique instead of the parent.
Allowing your ASD sibling to help is positive and will hopefully empower them to embrace their own capabilities. However, enabling them to assume a full parenting role is detrimental and should be discouraged.
Tip #4. Teach them how to explain ASD quirks
At some point, your ASD sibling will find themselves in the awkward position of having to explain ASD behavior.
Provide an opportunity for your ASD sibling to practice explaining a specific behavior to you before they attempt a formal definition to others. Help them understand the concepts below. Have them repeat the information to you.
Their explanation might sound rudimentary to you, but it doesn’t to them. After you feel like they have a basic understanding of the issues below, let them rehearse their explanation to you again. Practice and refine it together.
Here are some ideas for common ASD traits that need explaining. (Of course, tailor them appropriately.)
- Conversation Issues. Something your ASD sibling might need help explaining are conversational quirks. People with ASD often talk endlessly about the same subject. They repeat the same details over and over again. It feels soothing to them. They often interrupt and then dominate conversations for the same reason: it feels safe. Help your ASD sibling understand this concept by explaining that their brother/sister isn’t doing it to be intentionally annoying. They’re doing it because they don’t comprehend the concept of a back-and-forth conversation. Conversations, to them, are for communicating their own ideas; they’re not for integrating new information and letting other people contribute their thoughts based on the new information. Unfortunately, monologues are the only way they know how to communicate.
- Lack of Empathy. The most helpful way to explain lack of empathy is to define the difference between empathy and sympathy. Sympathy essentially implies a feeling of recognition of another’s suffering while empathy is actually sharing another’s suffering. More plainly, empathy is the ability to “put oneself into another’s shoes.” Try to help your ASD sibling understand the difference between these two terms. Then apply the concept to their understanding of “lack of empathy.” Explain that their brother/sister isn’t aware that they’re being selfish, and they’re not intentionally acting uncaring. Instead, they’re simply incapable of putting themselves in others’ shoes.
- Motor Clumsiness. People with ASD are sometimes clumsy at group sports. They might enjoy participating on a sports team from a mathematical perspective (i.e. baseball statistics or score keeping), or an individual sport (i.e. martial arts or cycling) but due to lack of coordination and/or focus, participating successfully as an athlete in group sports is not common. Try to help your ASD sibling understand this concept and let them talk about their thoughts on the subject. Have them tell you how their brother/sister’s clumsiness affects them. For example, they might disclose that they get picked on due to their sibling’s awkwardness. Discuss together the thoughts and feelings they’ve revealed to you. Then return the conversation to ASD impairments and the limits of athletic participation.
- Interests and Routines. Another common ASD trait is extreme (rigid!) focus on a specific subject. Try to help your ASD sibling understand this concept by talking together about a favorite subject of their brother/sister’s and the role that ASD plays. Let them explain to you how their brother/sister’s intensity about the subject affects them. For example, they might disclose that it makes them feel frustrated or embarrassed. When they’re finished talking, add that the reason their brother/sister gets stuck in a certain routine or subject is because it makes them feel safe. Explain that it makes them feel safe because they don’t have to experience the risk of learning something new.
- Sensory Sensitivity. ASD sensory sensitivity can display itself in numerous ways. It can be visual (seeing), auditory (hearing), olfactory (smelling), tactical (touching), gustatory (tasting), or all of the above. Help your ASD sibling understand why their brother/sister reacts so strongly to certain sensations. Try to use a simple example like the sound of metal scratching on a chalkboard. If possible, physically replicate the sound. Ask them if they experience negative feelings from the sound. Then tell them that lots of sounds, like the one they just experienced, feel even more unpleasant to their brother/sister. Explain that when they cover their ears, it’s because they’re trying to soften the intensity.
- Fidgeting or “Stimming.” Another common ASD trait is the inability to sit still. Fidgeting or “stimming” (shorthand for self-stimulation) displays itself in a wide array of movements. It’s really individual how these “explosions of energy” are exhibited. To help your ASD sibling understand stimming, talk about how energetic and uncomfortable they feel after eating too much candy, or cookies, or some other sugar-filled food. Ideally, have the conversation when they’re in the midst of a sugar high. Relate that feeling to their brother/sister’s need to fidget.
Tip #5. Justify household rules
You probably find yourself constantly explaining why the rules and expectations are different for different members of your household. For example, maybe your ASD child gets to spend extra time on the computer and/or less time doing homework.
Explain to your ASD sibling why it’s happening. Explain, if relevant, that their brother/sister does homework with a special teacher at school and therefore doesn’t have as much to do at home.
This will hopefully dispel any claims of unfair treatment. If not, continue explaining that extra time on the computer might help their brother/sister develop the skills needed to live as independently as possible, which could benefit the whole family.
If you explain it as being an advantage for the entire family, that might allay any claims of favoritism. It might also help your ASD sibling feel like you’re entrusting them with special information.
Tip #6. Reassure them that ASD isn’t contagious
Sometimes kids think that ASD is contagious. It’s not. You have to be born with it. If your ASD sibling has doubts, reassure them that it’s not like a cold or the flu; it can’t be ‘caught.’
Tip #7. Validate feelings
Your ASD sibling needs their feelings validated all the time. It might feel like overkill to you, but that’s not how it feels to them.
They need to know, repeatedly, that it’s okay to feel sad or embarrassed or guilty or angry or happy or neglected, or any other feeling they might be having. Try to be aware of the multitude of feelings that they could be having and create ways for them to share with you.
Teaching by example is usually the best way to demonstrate how to share feelings. For instance, when the two of you are alone you could say something like
“I’m so frustrated that your brother/sister won’t wear the new clothes I bought.”
Hopefully, this (or something like it) will motivate them to mimic your behavior and express their own feelings.
If not, try the same strategy again on another day or so. To open the conversation without putting them on the spot, you could use words that are as obvious as “…these are my feelings…”.
Whatever works best for you and your child is the right thing to say. It’s so important for them to feel like they can share their feelings without the threat of making you more frustrated or losing your love.
Tip #8. Create personal space
Your ASD sibling needs to feel entitled to their own belongings and their own private place in the world. This will hopefully reinforce the notion that they are a complete person separate from their role as an ASD sibling.
Find a spot in your home that they can call their own. It doesn’t have to be big. It can even be as simple as a shelf or a drawer. Just something that is solely theirs. Make sure that both your ASD sibling and your ASD child understand the boundaries.
Tip #9. Show compassion
Try to create an environment of compassion for differences in others. Model a positive perspective by always pointing out the constructive traits of being on the autism spectrum (e.g. enthusiastic, conscientious, unprejudiced, honest, smart, etc.) instead of dwelling on the negative.
Children mimic their parents. The way that you react to the challenges of your ASD child can be an example of compassion for your family members. They will follow your lead.
Remember that your ASD sibling will have to deal with many different people, personalities, and challenges as they navigate their way through life. Learning compassion from your love and guidance will give them a head-start on succeeding in life.
Tip #10. Develop family resistance
Most families with chronic disabilities struggle through times of fear and despair. The way that you show your true colors during those tough times can be a positive learning tool for your family members.
If you can, when new challenges arise, instead of thinking to yourself ‘I can’t take this anymore,’ approach the problem using the coping skills and resources you’ve gathered so far.
It’s important for your family members to see you face new challenges with courage and determination. They will hopefully do the same.
As your family copes and learns together, the stressors of living with an ASD family member can develop into many positive coping mechanisms: family closeness, an understanding of your own strengths and limitations, resilience, and new problem-solving skills. It’s not easy but try to focus on the positive.
Tip #11. Encourage participation in separate activities
Every resource I’ve consulted says that ASD siblings do much better when they participate in activities separate from their ASD brother/sister. Some resources even suggest that the two children attend separate schools.
The activity that’s appropriate for your ASD sibling might not be appropriate for your ASD child. And vice versa. That was the scenario for me and my brother. I was the athlete and he was the uncoordinated one so mutual activities weren’t typically appropriate.
If you encourage them to do things separately, neither one will feel like they need to perform better or worse to accommodate their sibling’s skill level.
For example, if your ASD sibling wants to try out for a school sports team, but is hesitant because of your ASD child’s athletic limitations, encourage your ASD sibling to try out for the team. Reassure them that you’ll find an activity for your ASD child that takes place on the same day at the same time, so there won’t be any hurt feelings.
Tip #12. Explain that it’s nobody’s fault
Watch for hints that your ASD sibling is blaming themselves for their brother/sister’s impairment. If you suspect there is any doubt in their mind about the cause of ASD, reiterate that it’s simply something people are born with and that it’s nobody’s fault.
You can say this as a general statement; it doesn’t have to be in reaction to something else. Just say it out loud, more than once, and it will hopefully sink in eventually.
Tip #13. Tell them they matter too
Your ASD sibling needs to know that they are on your radar too. Feeling loved and respected will make it so much easier for them to cope with the challenges of being a member of an ASD family.
One way to help ASD siblings feel valued, is to spend some one-on-one time together. For example, you could surprise them at school for a special lunch with you. A gesture like this will let them know that they matter to you too.
They need to know their actions and achievements are just as important to you as the other members of the household.
Tip #14. Share a secret code
Make it clear to your ASD sibling that they can come to you with questions and concerns anytime. Take time out to tell them that you’re always willing and available to talk.
Strategize a signal together that can be used to alert each other that something’s wrong when others are in the room. It could be either a specific word or gesture, just so that you use it specifically for these situations.
Sharing a “secret code” together will re-confirm to them that they’re not alone.
Tip #15. Get help from outside sources
Ignore the stigmas. Counseling from a mental health professional can be a huge advantage both for you and for your ASD sibling.
A good counselor will provide knowledge about specific tools and methods. Ask someone at your children’s school or your pediatrician for a recommendation.
Support groups are another great way of helping your ASD sibling feel connected and informed. Being part of a group will confirm to them that they’re not the only person in the world coping with an ASD family situation. Just having someone nod their head in agreement while you’re talking can be enormously empowering.
And finally, here’s some good news. While growing up as the sibling of someone with autism can certainly be challenging, most siblings cope very well. ASD siblings who live in a balanced, supportive home should suffer no long-term ill effects. For every warning I discussed in this article, there’s equal evidence of positive outcomes.
So to the parents and caregivers out there who are trying so desperately to be educated and sensitive to the needs of the ASD sibling in their lives, keep on! Take comfort in knowing that your efforts might feel futile at the moment, but the fact that you’re clued-in is making a bigger difference than you might think.
For more diversity and inclusion parenting tips, go to https://www.deiforparents.com
