Focus on Adult Siblings:
Navigating the Future
“Siblings are a lost group. We are accustomed to existing in the shadows of someone we love who has more urgent needs.”
Growing up with a sibling who has autism and significant support needs can be complicated and challenging. Your experience as a sibling doesn’t end in childhood; just as autism is a lifelong condition, having a sibling with autism will affect you throughout your life.
Many siblings have positive experiences and develop valuable skills and qualities. However, many also face significant challenges that can impact their wellbeing and life choices.
Andreana Tay struggles with dating as her non-verbal autistic sister Audrey is often seen as a burden by potential partners. She has made Audrey’s care her lifelong responsibility, even quitting her career in the Singapore Navy to support her sister full-time.
Watch Andreana and Audrey Tay’s story
See Supporting Siblings in Families with Autism for more stories on growing up with an autistic sibling
Caring for Yourself Before Caring for Others
“You need and deserve to put yourself first, because you matter and you are important in your own right. If it helps you to have a second reason, remember that you also need to put yourself first so that you can be there for others.”
Many adult siblings juggle multiple responsibilities, feel isolated and need support in their sibling role, even if you no longer live in the family home.
It is important that you recognise your own needs, take care of yourself and reach out for additional help and support when you need it. Self-care is not a luxury; it is a necessity.
Growing up with and caring for an autistic sibling can sometimes lead to stress and mental health challenges. Here are some examples of what siblings might experience (this is not an exhaustive list and may not apply to everyone):
- Siblings may develop depression as a child due to the impact of the home environment.
- Siblings may cope with ongoing stress from the strain of being a carer.
- Siblings may develop anxiety as they worry about a future without their parents and the future needs of their sibling with autism.
- Siblings may develop Post-Traumatic Stress Disorder (PTSD) from witnessing challenging behaviour or life-threatening situations.
It’s important to remember that struggling with mental health is not something you have to accept as a sibling or carer. You don’t have to face it alone. Reach out to a trusted loved one and share what you’re experiencing. Professional help is available, and many conditions can be treated or managed. You deserve to be healthy and happy.
Concerns about the Future and Long-Term Planning
A major concern for siblings is planning for the time when parents or caregivers can no longer support their autistic sibling, especially if they have high support needs. In our Asian culture, siblings often take on this responsibility when parents can no longer do so. However, you shouldn’t feel pressured to become a caregiver for your autistic sibling.
See Focus on Siblings: Practical Strategies for Parents to learn more about how to discuss the future of their autistic sibling in a sensitive manner.
Meeting as a family to discuss future care options for your autistic sibling can be really helpful. Have open conversations with your parents about their long-term plans, including financial arrangements for your sibling. It’s best to have these discussions early on, well before any transitions, as it can be tough to make decisions during stressful times.
See Ensuring Future Security for your Autistic Child in Malaysia to
learn more long-term financial planning for an autistic individual.
“About five years ago, while having a serious discussion with my father about placing my brother in a group home, he commented that he wished having a child with special needs came with a guidebook.
One that would affirm that it was okay to be scared, nervous, excited, and proud of the child he raised, and assure him we would all be okay if he let him live under the care of someone else.
It would also gently remind him that the decisions about what was best for his son was less about what he needed as a parent, and more about what was best for his son long term.”
Having Difficult Conversations with Your Parents
Planning these conversations can help make them more successful, build your confidence, and reduce anxiety. This can lead to better outcomes for you, your autistic sibling, and your parents.
Avoid discussing these issues in front of your autistic sibling; you can have a separate conversation with them if appropriate.
The location and timing of these conversations are important. A neutral place outside the family home can be helpful, as it provides a fresh environment without the usual distractions, allowing everyone to focus on the topic
Try to have these conversations as soon as concerns arise. Addressing issues early keeps them manageable and prevents a build-up of pressure and worry. Holding onto concerns can lead to a more intense emotional release when finally discussed.
The UK-based charity Sibs offers a helpful guide, “Talking to Your Parents”. You can find more tips to assist you and your parents through these important but tough conversations.
Helping Your Autistic Sibling Live Independently
Some of these sections are listed below.
Financial Literacy for Autism: