04/08/2025
THIS IS WHAT HAPPENS WHEN A PDA PARENT ASKS CHAT GPT TO WRITE A LETTER TO EXPLAIN TO EVERYONE WHAT WE GO THROUGH!!
( This was posted anonymously in another group, so I can't credit the parent personally but I hope she sees this !)
You HAVE to check it out!
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I want to share this here, in case it helps someone.
I asked ChatGPT to compose a letter to explain our situation (School Can't, Autism with PDA and burnout) to our family. I wanted friends and relatives to better understand the compexity of what we go through, and the far reaching effects it is having on our lives. I also intended it to manage their expectations of us, and not add to our load. I was very surprised to see how eloquently this letter was written. I may not actually give it to anyone, and I maybe I would make some small adjustments, but it certainly explains it much better than I could!
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What We're Living Through: A Letter to Our Family and Friends
We’re sharing this with you because we love and value you—and because we need you to understand that what we’re going through as a family is more than “just a rough patch.” It is a sustained, high-impact, complex situation that affects every part of our daily lives, our health, and our relationships.
We know that from the outside, it can be hard to make sense of what’s happening. So we’re offering this not as an excuse, but as a window into our reality—and as a gentle way to help you manage your expectations and show us the kind of support we truly need right now.
🔥 What’s Happening with Our Child
Our child is autistic and has what’s known as a PDA (Pathological Demand Avoidance) profile. This is not a behavioural problem—it’s a neurological one. Children with PDA experience even everyday demands (like brushing teeth, getting dressed, or answering a question) as threats to their autonomy and safety. These demands trigger extreme stress responses, often leading to shutdowns, meltdowns, or total withdrawal.
Right now, our child is in autistic burnout, a state of nervous system exhaustion caused by chronic stress, masking, and unmet needs. Burnout in an autistic person isn’t just being tired or overwhelmed—it’s a complete crash of emotional, cognitive, and sometimes even physical functioning.
Our child cannot attend school, and we’re not sure when or if they’ll be able to return to a conventional classroom. Their nervous system is so dysregulated that simply getting through the day—eating, sleeping, existing—is a massive task.
⚠️ Chronic Stress and the Nervous System
For our child—and by extension, our whole family—this isn’t just a temporary issue. This is a chronic trauma state. Each day brings new challenges: resistance to simple routines, sensory overload, explosive emotions, emotional shutdowns, panic, and fear. Their nervous system is on high alert, all the time.
And when a child is in this state, so are their parents. The human brain doesn’t easily separate our own stress from our child’s distress. We are constantly scanning for signs of escalation, adapting our tone, changing plans, softening language, and trying to predict and defuse potential triggers. This is not a normal level of parenting stress—this is living in fight-or-flight every single day.
Over time, this takes a severe toll on our own nervous systems. Chronic stress leads to fatigue, burnout, brain fog, mood changes, sleep issues, immune suppression, and emotional depletion.
🎓 Navigating Systems Is a Full-Time Job
On top of the emotional demands, we are navigating a complex and often unsupportive system. We're trying to:
Communicate with schools that don’t understand PDA or can’t provide suitable support.
Apply for exemptions, funding, or home education approvals.
Attend appointments with therapists, paediatricians, and specialists—when our child can tolerate it.
Research treatment options and advocate for a model of support that even many professionals are still learning about.
Keep records and meet legal obligations while also trying to survive emotionally.
This is more than a job—it’s a battle. A battle we didn’t choose, but one we fight every day because our child cannot do it alone.
🤝 Why Our Social Capacity Is So Low
We know we haven’t been showing up to birthdays, dinners, or family events. We know we say “no” a lot. It’s not because we don’t care—it’s because we have no capacity left.
Even the smallest outing requires planning, mental rehearsal, emotional energy, and risk. For us to attend anything, we need:
Our child to be in a stable enough state to be left at home or come with us (both are often impossible).
A backup plan for if a meltdown happens mid-event.
Our own nervous systems to be regulated enough to engage with others.
Most of the time, we’re running on fumes. We are not being flaky, rude, or distant. We’re just trying to survive.
💬 What We Need From You
What helps us most is not solutions or suggestions—it’s understanding, softness, and trust.
Please don’t judge us for declining invitations.
Please don’t assume that because our child “looks fine” that they are thriving.
Please don’t tell us they “just need discipline” or that they “need to toughen up.”
Please don’t minimise the severity of what we’re going through.
What we do need is:
Patience: We’re living in a state of long-term crisis.
Compassion: Even if you can’t fully understand, trust that we’re doing our best.
Low-pressure connection: A message saying “I’m thinking of you” with no expectation of reply means the world.
Help when offered with no strings: A meal, a lift, an errand—these things are gold.
❤️ Thank You
Thank you for trying to understand. Thank you for giving us the benefit of the doubt. Thank you for recognising that what we’re doing is incredibly hard—and that it’s being done out of love.
We haven’t changed. We’re just carrying more than we can comfortably hold. One day, things may feel lighter again. Until then, we hope you’ll walk beside us with kindness and without expectations.
With love,
Our family
