Welcome back to our Self-Advocacy at Home Series, where we have been taking a deeper dive into the ways parents and caregivers can foster a safe environment for building self-advocacy skills for an Autistic person they are supporting. In Part 1 we broke down the big umbrella concept of self-advocacy into smaller skill categories. In Part 2 we are taking a closer look at how to build a supportive space in which the practice of self-advocacy skills is safe and encouraged.

Building a supportive self-advocacy space isn’t always as straightforward as it might seem on the surface. It might be all too easy to assume that as long as we know ourselves to be open and receptive to the self-advocacy of the person or people we are supporting, then we can count on them to express their needs when those needs arise. In practice, it’s not always so simple! How can we create a self-advocacy space where it feels productive and safe to practice those skills? Let’s consider a few steps we can take!

One of the hardest parts for any parent or caregiver encouraging the person they are supporting to seek out more personal choice and freedom is that sometimes they might make choices we don’t agree with and sometimes they might make choices we know with a good deal of certainty will probably be the “wrong” choice. 

Let’s be clear, if there are potentially dangerous or devastating consequences to a decision it is OK to explain your thinking. But it is also important to accept that we developed our own decision-making process through trial and error, and we are not letting the people we are supporting practice self-advocacy if we are always giving them the “correct” choice. So as long as the stakes are not unreasonably high, it’s worth remembering both that mistakes are allowed and that we don’t have to define people by their mistakes.

One common challenge when it comes to self-advocacy is knowing what we want but being logistically unable to access it. This might be due to gatekeepers, lack of viable transportation, or any number of other reasons. 

One great way we can encourage open discussion related to self-advocacy is offering to bridge gaps when they pop up. 

Need to have an extended talk with a gatekeeper? Maybe you are in a better position to do that! Need to fill out a lot of paperwork to request an accommodation? Maybe you can help with the busywork! Such an environment helps it feel not only safe but beneficial to practice self-advocacy including the pitfalls that can sometimes come with navigating different situations.

One challenge of self-advocacy is that it fundamentally requires making choices about a variety of situations, but there are a number of factors that can make it harder for a given individual to choose in a given situation! 

As a caregiver, you are in a unique position to offer a variety of choices, and in many cases to offer multiple options that are safe and familiar to the person you are supporting. 

Practicing simple choices can make it easier to make more complex decisions or a higher volume of choices down the line. But in offering opportunities for choice it is also important to remember that sometimes certain choices can be overwhelming and that it’s possible to get burned out from too many decision points in one day. 

So just because making decisions is an expression of self-advocacy is a net good does not mean we should force it! Asking to not have to choose in a given moment is an act of self-advocacy in its own right. That doesn’t mean we stop offering choices, it means we respect the choice that has been offered!

As might be evident after the last few sections, one of the more challenging components of supporting self-advocacy is that even when we are at our best in offering support there is plenty of room for bumps, hiccups, or the unexpected need for a break. 

It can be genuinely frustrating when we work hard to offer a consistent choice, or to go along with what we think the person we are supporting wants, only to find that they can’t make a choice right now or that the help we offered didn’t work as well as expected. 

In those moments it’s even more important to remember that learning self-advocacy is a process and we are all trying our best. When you don’t take it personally and prepare to be flexible (within reason, your energy, and your resources!), you are creating a self-advocacy environment that can feel safe even under difficult circumstances.

One of the most helpful ways you can help to foster an environment of self-regulation is to create a designated decompression space when the person you are supporting needs a break. Crucial to such a decompression space is that it is always an accessible space. Even if we are arguing we respect when someone needs time to decompress before they can continue the discussion. 

Creating an open opportunity to self-regulate when needed will also offer the person you are supporting the opportunity to practice different types of self-regulating techniques depending on what they think might work best for themselves.

With that, we are wrapping up for the week, but we want to hear about your experiences! How has introducing concepts of self-advocacy fared in your home? If you are a self-advocate, what are some pitfalls you have notice in your own home when it comes to practicing self-advocacy skills? 

If you are liking this series so far what would you like to see us cover more in-depth? Just drop us a line at hello@autismgrownup.com and we will be back in Part 3 to talk about choice-making across the day.