Fostering Autistic Wellbeing Through Self-Care and Self-Advocacy

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Written by Sia Spark

Autistic individuals deserve to exist in a world that values us and preserves our right to dignity, autonomy and respect.

However, feeling valuable starts with valuing ourselves. In order to do this, we need to extend to ourselves the same compassion we expect from others, and compassion begins with practicing self-care and advocating for our Autistic needs.

Self-care

In recent years, especially in the context of COVID-19, we have seen a real focus on the concept of “self-care”. For many Autistic people, self-care might look quite distinct to that of our non-autistic peers, so it’s important that we put a specifically Autistic lens on self-care when we consider it for the Autistic population. But, as for everyone, appropriate and respectful, self-aware self-care, is essential to thriving as an Autistic person.

Self-care, as a general concept, means to engage in activities and to take steps to care for your wellbeing that embraces your whole personhood – mental, physical, emotional, social, and even intellectual.

Autistic self-care can look a little different to non-autistic self-care, and may involve attending to sensory or social downtime, or include more detail, more specific strategies, and greater frequency or diligence.

Engaging in healthy, beneficial self-care as an Autistic person is all about getting to know yourself, and responding to your Autistic needs with honesty. This can mean:

  • Respecting your own boundaries and your own unique pace (your “busy” might look very different to someone else’s),
  • Finding ways to communicate, keep in touch, and socialise with friends and family that work for you,
  • Finding calming ways to unwind and strategies to regulate/self-soothe, especially your sensory systems,
  • Allowing yourself time and space to become immersed in your passions or SPINs (“special interests”),
  • Nourishing and caring for your body in a way that balances nutrition with emotional safety around any sensory issues or food preferences you may have,
  • Accessing a team of health and allied health professionals that can help you with any co-occurring issues that you may experience (such as mental health concerns like anxiety, depression, OCD or eating disorders, or physical concerns like Ehlers-Danlos Syndrome, hypermobility etc.),
  • Catering to your sensory needs and/or sensitivities,
  • Finding comfortable ways to participate in the Autistic or broader neurodivergent communities, online or in-person,
  • Creating a self-care toolbox to help you focus, be productive, unwind or fulfill any other goals you may set for yourself, and/or
  • Setting yourself a comforting routine or structure that you are able to stick to, to minimise chances for unexpected distress.

If you’re unsure where to start or would like some new suggestions, a great way to explore what self-care options might work for you is to learn from the experiences of others in the Autistic community.

Self-advocacy

Self-advocacy means not just taking control of our own lives and deciding what we need, it also means that we have the skills and confidence to assert our needs and request the accommodations that will meet our needs.

When we can self-advocate, we are able to make autonomous choices about how we live our lives, without interference or coercion, and informed by our self-knowledge about our needs and rights.

Generally, self-advocacy applies to our own, unique situation (like, choosing what we do at home, at school, at work, or in our relationships), but in advocating for ourselves we can work as a community to try and change the ways that our society views Autistic people, how the media talks about Autism, and positively influence the policies that affect our lives.

At Reframing Autism, we want to make sure that Autistic people are included in all conversations about Autism, whether those conversations are about our own, individual lives, or about the Autistic community holistically.

As an Autistic person, it’s important to develop strong skills in self-advocacy. Sadly, the neurotypical world wasn’t built for us, and there is still plenty of misinformation and misunderstanding about Autism “out there” in the broader community, and even among professionals purporting to understand Autism. Unfortunately, this means that we’re going to likely face many moments in our lives during which we will need to speak up for – or advocate for – our needs to be acknowledged, respected and met.

Ultimately, it’s often up to us (as Autistic individuals and more broadly, together as the Autistic community) to advocate for ourselves, our needs, and our rights.

As Autistic people, we know more about Autism than anyone else. We know the problems that Autistic people face, and have lots of ideas about how to solve them. Some non-autistic people say they are “Autism experts,” and try to make policies, rules or ideas about Autism without talking to Autistic people directly. These policies usually don’t help us, and sometimes even make things worse for us.

That is why Autistic people have to be involved in making policy. We have a right to have our voices heard in the broader conversation about us, and a right to stand up for our own individual needs, without exception.

This is where the phrase, “Nothing about us without us” comes from, and you’ll hear that a lot within the Autistic – and wider disability – community.

There are a lot of ways you might like to advocate. For many, advocating at a personal level is enough, like taking steps to share our Autistic identity with others openly, or setting boundaries with co-workers, health professionals and loved ones. Others of us may be interested in systemic advocacy – this is advocacy which is about the whole community and can be complex and political, like becoming a vocal activist member of the Autistic community and speaking up for the rights of Autistic people more broadly.

Fundamentally, self-advocacy means to understand your rights, to stand up for what is best for you, and to know that you deserve to have your needs, as an Autistic individual, met. Self-advocacy, then, is another important conduit to wellbeing.

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Always was, always will be Aboriginal land.

The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.

We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.

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