I am a twenty-year-old who has a disabled sister who is now twenty-one. They received an autism diagnosis at birth.
Growing up with my disabled sister certainly had ups and downs. On reflection, a feeling of volatility stands out: you would never really know how a day would go. Many days were happy such as the summer days playing tag outside and having nothing to worry about; others had arguing and frustration. This experience is very normal – indeed, it happens in all relationships. The biggest challenge for us, from which most of the disagreements came, was the difficulty of finding a school that would suit my disabled sister’s needs. This problem created lots of stress for me growing up because the whole family had to put trust in multiple institutions, and they all seemed to let us down.
Now that we are both adults, the uncertainty seems to have mostly gone. The situation seems more settled, and I can go into most days knowing whether there will be any challenges. This has made daily life much less stressful, and has allowed me to not only enjoy our relationship more, but also to focus more on other aspects of my life. When challenging situations do arise, they seem to resolve more easily because we have matured and have a better understanding of the reality of different situations.
Now that I am at home less, I play a less active role in caring for my disabled sister, but still make sure to have frequent conversations whether over text or in person, and help to make sure they have enough provisions. The most significant role I currently play is helping my disabled sister deal with change and the uncertainty they are facing. For example, they are not sure what they would like to do in the future, which is an uncomfortable situation for anyone to be in. I enjoy helping them to overcome the challenges they are facing, especially because it fills me with optimism about their future.
There are many positives of having a disabled brother or sister that should be remembered despite negatives like stress, having to explain their behaviour to others with little understanding of autism, and frustration. You develop adaptability and resilience through being exposed to and having to deal with problematic situations that are often unexpected. Similarly, you become excellent under pressure as being a carer often involves resolving problems quickly. These types of skills will help you thrive in your personal life and career. Supporting a disabled brother or sister develops your emotional intelligence because they can find it difficult to express themselves, meaning you may have to read their emotions. The emotional intelligence this requires improves other relationships in your life, and puts you more in touch with your own emotions. It can be helpful to remember all the benefits of having a disabled brother or sister, especially when you are faced with difficulty.
I would like to share some advice for young adult carers. I have learnt that when a disabled brother or sister is dealing with a change, it is essential to balance engaging with the issue in conversation and giving them space to think about it for themselves. Relentless conversation can often become overwhelming for them, so I think it can be more effective to briefly say what you think, then give them time to rationalise the situation on their own. This often leads to them realising that a change they have opposed isn’t so bad after all! My second piece of advice is to make sure to check in when you are away, for example by sending a text. It is easy to forget that they may not have as many people to talk to as you, so really make an effort to make the periods when you are away as seamless as possible by staying in touch. My final piece of advice is to stay positive! See difficult situations as an opportunity for both of you to grow. I hope my advice will help you with your own relationships with disabled brothers or sisters.
All names have been changed.