Having a sibling with the autism is very different than having a child with it. It’s something that often makes us stronger, more patient, and more mature than others, but it can also be a struggle. While parents might have read a lot about how to treat their diagnosed child, they might overlook the fact that there are special conditions created for siblings without the disorder as well.
I have put together a list with tips for parents on things they can do and think about concerning their children who don’t have the diagnosis, to help them better understand us siblings and our role in the family.
1. Talk to us about our sibling’s disorder
This might sound obvious and very simple, but in fact, many parents avoid talking to us neurotypical children about our sibling’s diagnosis and updates on it and hardships with it, thinking they don’t want to bother us. You don’t have to tell us every detail, but it’s important to be open and to talk to us. We spend just as much time with our siblings as parents do, and we want to understand our sibling’s disorder better so that we can be the best sibling we can be. If a child in a family has a disability, it affects all family members, and because we are affected, we also need to be educated and prepared. And yes, talking about our sibling’s autism can be emotional, and it might be hard, but that is why it is important not to let it become a stigmatized topic.
2. Teach us to go against the flow
Especially when you’re younger, it’s easy to give in to group pressure. Some studies suggest that children with autism can be at a higher risk of being bullied than other children. They may also be unable to communicate this to parents and other adults. Children often act and speak before they think, and are often quick to question, or even taunt, behaviors that, to them, seem unnatural. Teach us to always put our sibling and their special needs first so that we are prepared to stand up for them. Teach us that it’s wrong to use the R-word, and it’s wrong to use mental diagnoses as derogatory terms. Teach us what to do in situations where we might be torn between siding with our peers or with our siblings.
3. Don’t assume we know less than you
We’ve had our autistic sibling our whole lives, or at least for a large part of it. Autism will be a part of our lives, and we would be different people had our siblings not had it. Unlike most parents, who have had to educate themselves at a later age about something they perhaps knew very little about before, we learn how autism works at an early age from seeing our siblings—we see how our siblings are different and we develop our own strategies for coping with it. Maybe we haven’t read all the parenting books, but we know our siblings, just like any siblings do, so let us teach you too sometimes.
4. Sibling workshops
Sibling workshops are great because they give us the chance to discuss what can feel like a personal and sensitive topic and meet others in the same unique situation. Even if everyone has a unique family situation and siblings are on different places on the spectrum, it can be very liberating just to be able to talk about things in a safe space with others who understand what we are going through. There are also many online groups and support networks, and those can be just as helpful. Parents, do suggest to your neurotypical children to go to these kinds of meetings, because there are many things about our siblings and their disorder that only we see as siblings, and it can make us feel less lonely in our situation.
5. Tell us we don’t have to be superhuman
Siblings of neurotypicals usually mature and become more autonomic and independent much earlier than their peers, as parents have less time and energy to spend on us. Parents also expect more from us, and many of us easily fall into thinking that becoming overachievers in school, work, or other activities is the only way to get our parents to see us too, but it can easily also become a pressure and do much damage to our self-image. Just tell us that we don’t have to be perfect, and we don’t have to “earn” your love and attention by our actions. But also don’t feel sorry for having to spend more time with our siblings than us, because we understand, even if we think it’s unfair sometimes.
6. Don’t neglect our mental health just because we’re “the unaffected one”
Studies have shown that siblings of people with autism are more than twice as likely to suffer from a psychiatric condition than the rest of the population. Siblings also have a large chance of developing autism themselves, and even if they don’t develop it, many struggle with developmental difficulties commonly found in those with autism. Neurotypical siblings who struggle with mental disorders might find it hard to talk about it, and we might even feel guilty, not wanting to cause our parents more hardship than they already have with our siblings. If you suspect that the unaffected child might have a problem or disorder, pay attention to his/her mental state, talk to the child, and share ways to get help. Just look at him/her as your child, not your “unaffected” child.
7. Don’t stigmatize negative thoughts
Parents have them. Siblings have them. Yet, it’s a very stigmatized idea to have negative thoughts about it. Sometimes we, too, get so mad at our sibling’s disorder, and we get angry and sad and feel confused and helpless as well. We hate that the world is an unfair place to live in and that others can be so ignorant and cruel towards people with disorders. Tell us it’s OK to feel this way and that it’s not our fault. It’s OK to be jealous of other people and other families who, bluntly speaking, have an easier life. Parents definitely struggle a lot, but it can be extremely hard for us siblings too sometimes, and every now and then you just need to vent all these emotions, and it should be OK to do that.
8. Encourage us to seek out friends
Especially at younger ages, having a sibling with a mental disorder might make us reluctant to bring friends over, thinking our sibling might act weird. Encourage us to defy these thoughts. Also, try to give your child some space and alone time with friends, either if the autistic sibling can be out of the house, or offer to take the nonaffected sibling and their friends somewhere they can spend some time by themselves. This advice also applies to children with the disorder. For people on the spectrum, having an understanding and accepting friends, whether they are personal assistants, autism support groups, or friends at school or work for the more high-functioning, can be a huge help in their personal development.
9. Spend some alone time with us
Every child just wants to spend some time with their parents alone sometimes. This is the same for all families with more than one child, with or without family members on the spectrum. Every now and then, just make some time for just us to do something together. We siblings tend to end up in the shadow of our siblings’ needs much of the time. So let us be the center of your attention too sometimes. Try to set this kind of separate time aside for us on a regular basis, because as siblings, we need to be reassured sometimes that we are also equally loved and important, even if we don’t get as much attention as our sibling on a regular basis.
10. Encourage us to make our own free choices
Most siblings will always have their sibling, and their special needs be a big part of their life. Even if parents need someone looking after their neurotypical child when they no longer can, don’t tell us we have to be around our siblings 24/7. The best thing parents can do is to encourage us to live our own lives and do things we want because we will always love our sibling and we will always be there for them even if we live our own lives too. Don’t let our lives be consumed by our siblings, but encourage us to make choices for us, and to have our own dreams and aspirations. Most importantly, tell us that it’s OK to talk to you about these dreams so that we don’t stay silent, thinking what we want is inferior to our sibling’s needs.
This article was featured in Issue 72 – Sensory Solutions For Life