Welcome to the Siblings Series, where we are shifting our focus to siblings of Autistic people across the lifespan. In Part 1, we offered a brief overview of general resources available to siblings of people with special support needs. In Part 2, we went over some common childhood needs. 

In Part 3, we are discussing common needs that pop up in adulthood.

For some adult siblings of an Autistic person, adulthood needs may be more related to maintaining a relationship and advocating on their sibling’s behalf when the moment calls for it. Other siblings may take on additional responsibilities for providing or managing care. 

This post is focused on some of the more practical concerns a sibling might have when taking on some or all of the responsibilities that might have previously belonged to a parent or other caregiver. 

One crucial practical concern for any adult sibling is maintaining a strong sibling connection as everyone gets older and responsibilities and expectations change. Whatever your goals as an adult sibling or a parent seeking to offer resources to an adult sibling, we hope this post will offer some helpful starting points.

One reality that any sibling must plan for is what the future will look like. Parents and caregivers cannot always fulfill all their different roles and responsibilities indefinitely, and having a shared vision of what the future will look like can go a long way toward staying on the same page and trusting that everyone will work toward the future as a team. 

There are plenty of questions a sibling might want answered, or goals they may want to share in the context of deciding what the future may look like, and opening up the conversation so everyone can be in agreement makes it another goal that can be worked toward, rather than a big, nebulous question that may feel overwhelming when left unaddressed.

When it comes to involvement in providing support, siblings may have a wide variety of options depending on their specific context and living situation. Some siblings may actively desire to become more involved in care or support and seek out means of doing so. 

Others may actively prefer not to and wish to limit their support to what is necessary. Knowing the degree to which Allistic siblings wish to be involved in care or support in adulthood is an important component of planning what the future will look like. 

Whatever degree of involvement an adult sibling may wish to have in playing a support role, it is likely that they will want to play some role in planning so that they can anticipate what the future may look like and make their own plans accordingly. 

Planning may require reconciling some of the realities of a given individual’s support needs against the options available to meet those needs, and doing so together with a shared knowledge of each individuals needs and limitations can go a long way toward building a plan that everyone agrees is the best available option for the time, even if that plan might not be the one we want in a perfect world. 

Planning can answer some crucial questions: who will live where in the future? Who will be responsible for the most pressing support needs? What kind of resources will be necessary? Will we have access to those resources when we need them? What can we do if we don’t?

Answering those questions might not be easy, but it is easier than trying to answer them on the fly when they become unavoidable.

Siblings who plan to take on a caregiver role may already have some familiarity with what that role entails from life experience, but it is also not at all unreasonable for some siblings to need some time to adjust and learn how to carry out all their support duties effectively. 

Working together on building a transition plan to a caregiving role, even if it isn’t fully clear when the actual transition might be necessary, can go a long way toward helping someone who has decided to take up a caregiving role to hit the ground running and be able to implement the systems and day-to-day care that best meet their sibling’s needs!

Among the practical daily living concerns for the future is another equally important consideration: maintaining a sibling bond as we get older and our lives change. 

The shared interests that might have brought us together before may no longer be as interesting, or a sibling taking on a caregiver role might find fewer opportunities to connect in a non-caregiving setting. 

Consciously setting aside some time to identify new or focus on old shared interests can go a long way toward maintaining the fun sibling bond even when adulthood takes our attention in every direction.

With that, we are wrapping up for now, but we are interested in hearing from Autistic siblings or siblings of Autistic people about the topics you’d like to see more of in this category, your own experiences, or constructive feedback. Let us know what you’re thinking at hello@autismgrownup.com, and we will see you for Part 4: Caregiving Common Needs!