When one parent carries all of it: how Kate shares the load of raising a multiply neurodivergent child

When Theo was assessed as autistic and ADHD with a PDA profile, Kate did what she does with everything.

“I am a person and a parent who always just tries to do a really good job with things. I take it really seriously. It immediately gave me something to focus on. How can I learn about Theo's experience? How can I understand what lies underneath the behaviours? How do I do a good job as a parent?”

She read the books. She followed autistic and neurodivergent creators, researchers and clinicians. She found Yellow Ladybugs, which was the first organisation that pointed her towards neuroaffirming practice, and she read their book. She joined Facebook groups and eventually left them. She was the one who dealt with the school, the clinicians and the NDIS applications.

She had not heard the word neuroaffirming before this deep dive. When she found it, something else came with it.

“I did not like the deficit-based lens that dominated in my world, and frankly I think the deficit-based lens that I had been exposed to was probably what prevented Theo getting a diagnosis earlier.”

She remembers him at five or six saying he did not feel like he belonged in this world, that he felt like an alien, and her not knowing that this is a common autistic experience, or knowing to push their paediatrician further when they had insisted it was anxiety specifically.

None of what she was learning and trying with Theo was in one place.

“It was very fractured. It was very much about me pushing information to the people in his life. It was all on me.”

Understanding Zoe's 2025 study of 1,091 Australian families puts numbers on the version of this that Kate was living. Parents of neurodivergent children reported about 33 hours a week on specific caregiving needs, and around 10.5 of those hours went to emotional regulation, advocacy and administration alone. Nine in ten said they feel misunderstood or invisible.

What made it heavier was that everything she learned made the standard higher.

“The more that you learn about how to be a great parent to a child who is multiply neurodivergent is that co-regulation is everything. And it is true. You see it working and it is so bloody hard. It is so hard when you are carrying all your own things. You are a human as well.”

Kate was not only carrying the information. She was sharing it regularly with Dan, who often felt overwhelmed or even judged by it.

“I was also putting a lot of pressure on my partner, Theo's dad, to do the same work. He is ADHD, so he has his own regulation challenges. And I just felt like we were kind of in this loop of me reading and learning as much as I could, absorbing all that, feeling a really heavy weight of needing to do really well for Theo, frequently missing the mark for myself in the moment, but also really noticing when my partner was not doing a good job.”

Passing it on directly did not work, and it was not because Dan did not care.

“His ADHD comes with a sensitivity to perceived correction.”

So every reminder landed as a correction. Sending him an article was a hint. Saying something in the moment, which is the worst possible moment anyway, was a telling-off. The knowledge gap between two parents had turned into real friction between them.

Kate had deliberately refused tools of this kind before. It was not about capability.

“I never used any kind of AI tool for this stuff. I do not want really personal and maybe quite sensitive information about my family to just be in the hands of any tech company. I understood the benefits there could be to using that, but I had very consciously, both ethically and privacy-wise, said no, I do not want to do that.”

What changed her mind was a certificate. She signed up when Understanding Zoe announced that its Information Security Management System had been certified to ISO/IEC 27001:2022 by Prescient Security.

“I was excited when I saw that you got the certification.”

Two things in her account are the norm rather than the exception.

The load, and who carries it. In Understanding Zoe's 2025 study of 1,091 Australian families, parents of neurodivergent children reported around 33 hours a week on caregiving, 10.5 of them on emotional regulation, advocacy and administration. Nine in ten feel misunderstood or invisible, and 27% have turned down a promotion or an opportunity because of caregiving demands. In that study, 64% of parents of neurodivergent children said they feel exhausted, against 42% of parents of neurotypical children. Three in five parents raising a neurodivergent child are neurodivergent themselves.

Kate's own line for it: "It can feel so isolating to parent in these conditions, and yet when you actually start talking to people there is so much commonality."

The system, not the child. Australia's National Autism Strategy 2025 to 2031 records that families "can themselves face challenges in navigating complex systems". The Australian Bureau of Statistics counted 290,900 autistic Australians in 2022, 1.1% of the population and up 41.8% on 2018.

And on the demand avoidance specifically. Australia's national assessment guideline, from Autism CRC, addresses PDA directly at Recommendation 45.8: demand avoidance should be understood as driven by an anxiety-based need to be in control, rather than as a child being oppositional or defiant. The PDA Society describes the same profile as a persistent drive for autonomy. That reframing is the difference between insisting and lowering the demand, and it is the reframing Kate had to find on her own before she found it in one place.

And what the imbalance does to two parents. The claim that around 80% of couples raising an autistic child separate is repeated constantly and has no research behind it. The honest picture is narrower and still worth knowing. Hartley and colleagues (2010), following 391 families, found a higher divorce rate among parents of autistic children, 23.5% against 13.8% in a matched comparison group, and found that the raised rate persisted into adolescence and early adulthood rather than easing after childhood. Freedman and colleagues (2012), looking at nearly 78,000 children in a national survey in the United States, found no difference at all: 64% of autistic children lived with two parents, against 65% of children who were not autistic.

What is not in dispute is the imbalance underneath it, and Kate names that herself. "Women are just sick of being responsible for it all."