Welcome back to the Siblings Series, where we are highlighting common needs that siblings of Autistic people may encounter as they grow up, either in a direct support role or as a supportive family member. 

In Part 1, we talked about organizations that focus on the perspective of siblings through a sibling connection, advocacy, or networking lens. In Part 2, we took a closer look at some common childhood needs. In Part 3, we went over some practical considerations in adulthood. In Part 4, we are focusing on siblings who take on a caregiver role and the needs that might be associated with it. 

Siblings who take on a caregiver role may have been involved in direct support at other points in time, but may also not be fully familiar with the day-to-day routine and responsibility associated with providing it. 

As familiar as they may be with the needs of their siblings, taking on full responsibility may entail a learning process pertaining to areas like finance, medical needs, enrollment in government programs, and otherwise maintaining a broader support network. 

In addition to these potential changes, a sibling caregiver may find themselves navigating those changes without a safety net if they are thrust into the role by a parent suddenly becoming unable to provide care. So let’s look at some common areas of need for siblings who may take on or are already in a caregiver role.

When planning for the future with a sibling who intends to take on a caregiver role, it is important to plan for two futures: the one in which the sibling must take on the caregiver role and the hypothetical one in which the sibling also suddenly becomes unable to provide care and a backup plan is needed. 

Planning for the first is relatively straightforward, as the question is often more one of the appropriate timing than whether it will happen. Planning for the possibility of a sibling not being able to be a caregiver as intended may require discussing an alternative, whether it is going to another family member, seeing what options are available through your medical plan, or seeking the help of a local support network member. Of course, support networks do far more than just act as a backup plan.

One of the most valuable ways we can support a future caregiver’s needs is by establishing a support network early that can help both ease the transition into a full-time caregiving role and be there to fill gaps that a sibling caregiver might not be able to fulfill on their own. 

Not only is a good support network a helpful way to manage some of the discrete tasks involved with meeting someone’s day-to-day needs, but it is also a great way to enable further expanding or reinforcing itself, as a caregiver who is not spending all their energy on meeting day-to-day needs will have an easier time seeking out further support network connections. Building a support network early goes a long way toward ensuring a support network’s longevity!

One reality of transitioning into a caregiver role as a sibling is finding oneself performing tasks or potentially even making decisions that would have once fallen to a parent or older caregiver. While it may be important to take up that caregiver role, that does not mean you have to discard or ignore your relationship as siblings. 

A sibling relationship can be a strong foundation for better shared communication and approaching challenges or opportunities as a team. Likewise, consciously taking time to celebrate those fun or sentimental things that make your relationship unique can go a long way toward maintaining a strong bond through moments that may require adjustment or challenging discussions. Sibling connection is more than just fun and games; it’s the glue that holds the team together!

With that, we are wrapping up our Siblings Series for now! But that does not mean we are done touching on this topic, and we certainly aren’t done hearing from you! 

If you have any suggestions regarding new additions to the Siblings Series, stories about your own experience, or requests for other topics, then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and stay tuned for the new upcoming series.