Adult siblings of PDAers

PDA doesn’t disappear with age, and many PDA adults face ongoing challenges in relationships, employment, and daily life.

This page is to help adult siblings of PDAers think about how to maintain a relationship with their sibling and consider what role they want to take in their support as they both get older. It is aimed for those who are not PDAers themselves.

Your PDA sibling may be living completely independently, they may be receiving support from your parents to do so, or they might still live at home.

For many adult siblings the question of how much they could help their siblings when their parents are no longer able to is an important one.

• What do you want? As an adult sibling you might feel like you want to take on a caring role in your sibling’s life or feel like it’s the right thing to do. But if you don’t want to, or they don’t want you to, then it’s ok to decide that isn’t the best decision for your family unit. Taking on a caring role can change the dynamic between siblings, and you may not want that.
• Talk about it: if the support arrangements for your sibling are changing and you’re involved in some way, it can be helpful to base your discussions on what each person has their own control over. It can be useful to explore what the best-case and worst-case scenarios could look like while you’re talking about changing support needs. You can then agree a plan that feels safe to everyone.
• Remember everyone’s needs: you, your sibling and your parents each have personal choice over your actions and the right to express your needs and the boundaries you’d like to put in place.
• It might not be perfect: your needs and boundaries might not match up with each other’s. This may mean that someone doesn’t get the solution they want. Your sibling has a right to say what they want their care to look like. You have a right to set boundaries around how involved you will be. It is important that you carefully think about and prioritise your own needs in any arrangement you come to.
• Gaps might open up in care: for example if your sibling needs around twenty hours per week of outside support, but you are only able to offer five – then they have a choice to make about what action should be taken to fill the gap if this is a decision they are able to make themselves. This might mean considering who you can ask for extra help. Your local adults social care team and your sibling’s GP might be able to help you find suitable local support to fill any gaps in care needs.

If you aren’t taking on caring responsibility as an adult sibling, you are likely to still be a key part of their support network and life. While it’s normal to have opinions about your sibling’s life the following ideas may be useful in approaching your relationship:

• Accepting you might have differing expectations: try remembering that your sibling is an adult too and has the right to make their own choices, even if those choices might seem strange to you in some way.
• Avoiding comparison or competition: try spending your time together doing things you both enjoy where possible.
• Respecting their home and boundaries: while some people might be delighted if you do the washing up after they’ve cooked you a meal, for a PDAer, it might feel like an attempt to control or rearrange their space. Saying, “it feels like it’s my turn to wash up, is that ok?” is a clear sign that you respect their boundaries and are considering their needs.
• Waiting to be asked for advice: if it is asked for, try exploring options and the potential outcomes with your sibling rather than just telling them what you think they should do.

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