During a day where there is an endless avalanche of demands, safe people such as our loved ones, a favourite teacher or allied therapist can feel like the only people with whom we can prioritise our own need for safety over “doing the thing”. We may be relying on our time with them to connect with people who unconditionally accept us, and regain some choice and control in our life. When these people place demands on us, the feeling of chronic unsafety elicited can be overwhelming.
For our allies without PDA, what may seem like reasonable requests can be met with extreme distress and avoidance, and in the clash between our different experiences of the world, everyone can end up with their needs unmet, feeling unheard or unsafe, and with “the thing” still not done.
However, with the right strategies, it is possible to create a supportive environment with fewer demands to help your PDAer feel safer and more connected, and promote a harmonious and productive household, classroom or workspace.
It is crucial to understand what PDA is and how it may affect your loved one, client or student, as supports that work for non-PDA Autistic individuals can actually make things worse for Autistics with a PDA profile. Read our PDA Guide for Allies, and our informative Autistic adult’s account of PDA or Autistic parent’s account of parenting a PDAer to learn more. You may pick up important personal insights such as how many of us prefer the term ‘Persistent Drive for Autonomy’ coined by neurodivergent activist, Tomlin Wilding.
By providing options and enabling your PDA loved one, client or student some buy-in in decisions, you empower us to navigate situations on our terms, fostering collaboration and reducing the need for avoidance. This respects our need for independence and an equal say in matters that affect us. For example, if shoes need to go on, rather than saying, “Put your shoes on” you could say, “I wonder whether you’re going to choose your sneakers or sandals.”
Which brings us to the reality that direct language and questions that demand answers can feel threatening to a PDAer. Avoid loaded phrases like “You’ve got to …” and “Why haven’t you …?” and “It’s your job to …” Try replacing them with declarative invitations to join in, such as “I wonder if you’d like to help …” “I’m thinking about the next step in this routine, but have forgotten it …” and “I hear some people like to … Maybe we could try it too.”
When there’s a task we have to do and it’s overwhelming to initiate and do it alone, it can be really helpful to have an ally offer to be our ‘body double’ and do a task together, by breaking it into smaller steps. For example, you could say, “It would be really great if you could lay the placemats out, while I serve up dinner.” Our strong sense of fairness can appreciate the division of labour and it can feel like you are helping to lessen our load. A job shared is a job halved!
PDAers are often playful and creative at heart. Turning tasks into games, incorporating our interests or introducing novelty can make transitions much easier.
Pick your battles. Ask yourself does not “doing the thing” really have unsafe or unhealthy consequences, or have you been conditioned to believe it needs to be done a certain way in order to meet non-autistic societal standards and/or family or friends’ expectations? Households can run a lot more smoothly if PDAers are allowed to do things their preferred way, for example, not sitting down at meal times, eating safe foods or wearing their same, favourite clothes. Focus on the end goal, rather than the means of getting there.
To someone feeling their autonomy is under threat, introducing punitive measures or rewards for task completion can suggest your love or acceptance is dependent on their compliance, which will only add to our uncertainty and overwhelm, erode our connectedness and heighten our stress and avoidance.
This is our number one take-home message. When we avoid activities, we’re teetering on the ‘freeze’ state of our stress response. This is a biological sympathetic nervous system response that dates back to our ancestors. Just like goosebumps, we have no control over it, it will be largely invisible to you, and it cannot be swiched off with any amount of pleading, rational thought or threats. Forcing the demand will only escalate our distress and risks causing a meltdown or shutdown. Instead choose validation and connection. We need to feel unconditional love and acceptance – that we are loveable even when we can’t “do the thing” and that you love us enough to co-regulate us to a place of safety.
We are constantly learning more about how Autistic people experience their PDA and what can be helpful. Updating your knowledge will help you to understand what is going on for your loved one, client or student and help you to meet them with compassion.
Visit our Courses & Webinars page to see our latest list of Autistic-led education opportunities.
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 Amangu, Awabakal, Bindjareb, Birpai, Whadjak, Wiradjuri and Yugambeh 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 and present, for their wisdom, their resilience, and for helping this Country to heal.