From the embarrassment and parentification to the unconditional love
Generally, people with siblings with autism describe their relationship as positive, based on love and care. However, there are still some challenges for neurotypical individuals, which lead to some mixed feelings.
Robbed childhood
A very common expression mentioned in the literature is “robbed childhood,” suggesting that neurotypical kids have to mature earlier than their peers to help take care of their sibling(s). This happens because the parents can’t be available 24/7 and need someone to step up. In some cases, the lack of financial resources to pay for a “babysitter” can aggravate the situation.
As a result, these kids feel emotionally tired, and sometimes they externalize with challenging behaviors such as kicking objects and screaming. Another common display is withdrawal; they just go to their room and try to isolate themselves from others. In those cases, it is better to give them some space and wait for them to calm down before talking to them.
Concerning school, it is not rare for them to step up for their siblings. Since autistic children are a more vulnerable group and have social difficulties, some kids can try to take advantage of them, and they don’t have the resources to defend themselves. As a parent, it’s nice to see that their sibling is available to protect his StarSibling, but it’s reasonable to acknowledge that it’s a bit too much responsibility for a kid.
Looking back: Is it all negative?
As a kid, it’s hard to express yourself using words, so we looked at some studies with testimonials from when they’re adults. Rather than seeing their parentification as an objectively negative or positive experience, it is described as complex and filled with mixed feelings. They had so many responsibilities and had to take care of their siblings, and, at times, it felt like they didn’t feel appreciated. Their sibling could start being aggressive, have a tantrum, and occasionally they felt like their parents didn’t give them the attention they deserved. One common complaint is that their parents didn’t feel so enthusiastic about their wins and achievements. It seemed like their autistic sibling always came first and that their development was more important.
Some, sadly, also mentioned that they felt embarrassed to go out with their siblings or to bring some friends over to the house. They feared that their StarSibling would act in an unusual way and others wouldn’t understand. This fear of being judged made them feel guilty and made them avoid certain social situations, but it passed as time went by and they matured.
It is important to note that these reports aren’t unanimous, even though they are very general. The experience of having a neurodivergent sibling is very diverse, almost like it’s a spectrum (ba dum tss…). It depends on the characteristics of the family, if the neurotypical sibling is older or younger, and the characteristics of the StarKid. When kids are on the more severe part of the spectrum, it is easier to be more caring. For the ones with more externalizing problems, it can be more exhausting, and for the ones with higher IQ and adaptive skills, their needs may be a bit less demanding.
Seeing the positives
Even after mentioning all the negatives, it is rare to see a sibling describe their relationship as negative. They say that this caregiver role got them closer to their sibling and that it strengthened their bond. It has also been shown that this “parentification” of their role results in more maturity and more empathy, as they are very attentive to others' needs and emotions. They also tend to do more prosocial behaviors, in essence, doing more good deeds for others.
They also report that in adulthood, this caregiver role persists and that it affects their life decisions. They are very reluctant to move to another place because they want to be near their sibling in order to help. Even though it takes them some freedom, they don’t feel pressured to act this way. They do it because they really like their sibling and want them to thrive more than anything.
The thing to remember is that, even though it’s challenging and tiring, these siblings use the word “love” to best describe how they feel about their StarSibling.
Wholesome story
We want to highlight this very interesting video from Mia Hemstad. She is a YouTuber focused on mindfulness, motherhood, self-care, and mental health. In this video, she talks about her experience as a primary caregiver of her autistic brother.
Her brother is on the more severe part of the spectrum as he has difficulties communicating, a lack of awareness of personal space, and lack of attention, among other characteristics.
In this video, she addresses two main points: the need to find government-funded programs and her brother’s need for independence. Even though it can also be a challenge for neurotypical people to spend time taking care of their siblings, the StarKids don’t want to feel like a dead weight and want to live a life as normal as possible. Mia says that her brother was super happy when she told him he got a job and that he had a huge smile once he got his first paycheck. Earning his own money was a way of feeling more competent and having more freedom.
What can you do as a parent?
As a parent, you should try to take some pressure off these kids. It is normal for the StarKid to get more attention because he is a bit less independent, but it is still important to be aware of the neurotypical one’s needs. Here we present some tips to make them feel more valued and to help them cope with stress:
- Being more attentive and celebrating their wins. Make them feel valued and that their development is also one of your priorities.
- Make a schedule to let your kids have some alone time or plan some activities with friends.
- Be mindful of their needs. Try to ask them here and there how they are feeling and if they feel tired from looking after their sibling.
- Let them relax when they feel more tired emotionally. We recommend practicing some breathing exercises which they can use when needed.
- Practice emotional communication with both siblings. The neurotypical one shouldn’t be afraid to talk about something that is bothering him to the other sibling as long as he says it in a constructive way. Also, teaching the autistic child how to avoid behaviors that might disturb the other sibling is important for a healthy relationship.
- Explaining the characteristics of their autistic sibling to them can also be of great value. If they understand why their sibling acts a certain way it may be easier for them to cope with some behaviors.
Even though we mentioned what you can do to help your child, it is also important to know what you can do for yourself. It’s normal for you to feel guilty for not giving the neurotypical child more attention, but you need to be compassionate towards yourself. We believe you’re doing a great parenting job and should pat yourself on the back more often.
Be mindful
Sit in a comfortable position and direct your awareness to your breath. Take three deep breaths and ask yourself:
- Am I giving the attention my neurotypical child needs? If not, how can I do it?
- Does he look tired from looking after his sibling?
- Do I provide my kid with a safe space for him to express his concerns?
If the answer is yes to these questions, don’t feel guilty about it. Being a parent of a StarKid is demanding on its own, and sometimes we lose track of other important stuff. Being mindful is a long journey, and with time you will be able to balance out all the aspects of your life. For now, just do your best… and meditate!
To finish, we invite you to share your personal experience related to this subject and some practical advice that has worked for you.
