For parents and caregivers
When one parent carries all of it: how Kate shares the load of raising a multiply neurodivergent child
Kate* is an Australian parent raising a multiply neurodivergent and gender diverse child. For years she was the only parent who read the books, followed the researchers and held the whole picture, and handing any of it to her partner turned into conflict. Since August 2025 both parents have used Understanding Zoe, and what Kate learns now reaches Dan* without her teaching it.
Kate is not her real name. Her son and her partner are called Theo and Dan here. All three names were changed at her request, to protect her son's privacy. Everything in quotation marks is hers, word for word.
By Laetitia Andrac, co-founder and CEO of Understanding Zoe. Published 4 September 2026. About 18 minutes to read.
At a glance
- Who
- Kate*, a parent in Australia
- Her son
- Theo*, autistic and ADHD, with a PDA profile
- Her partner
- Dan*, Theo’s dad, ADHD
- Using Understanding Zoe since
- August 2025, about a year
- Before that
- Podcasts, Instagram, books, Facebook groups, and the rest of it in her head
- Also managed by Kate
- School, clinicians and the NDIS paperwork
- Who uses it now
- Both parents, on the same profile
Before: one parent holding the entire picture of a neurodivergent child
Theo was assessed as autistic and ADHD, with a PDA profile. After that, 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. Yellow Ladybugs was the first organisation to point her towards neuroaffirming practice. She read their book. She joined Facebook groups and eventually left them. It was Kate who dealt with the school, the clinicians and the NDIS applications.
She had not heard the word neuroaffirming before all this reading. 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 what he said at five or six. He did not feel he belonged in this world, and he felt like an alien. Back then she did not know this is a common autistic experience. She did not know to push their paediatrician further, either. The paediatrician 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 what Kate was living. Parents of neurodivergent children reported around 30 hours a week on caregiving. Nearly ten of those hours went to emotional regulation, advocacy and administration. 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.”
The imbalance: the knowledge gap turned into friction
Kate was not only carrying the information. She was sharing it with Dan regularly. He 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. That was not because Dan did not care.
“His ADHD comes with a sensitivity to perceived correction.”
That meant 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.
What changed with Understanding Zoe: the information stopped coming from Kate
Kate signed up in August 2025, set up Theo’s profile and invited Dan straight away. What she hoped to get from it was not a specific app feature.
“One of the things that I figured was, this might be a way to help him acquire and retain some of the knowledge that I have without it being this tense exchange between us.”
That is what happened.
“It became a neutral mediator. I could feel confident that Dan and I would be on the same page, would have access to the same insight about Theo, would be able to draw on the same ideas and skills, and it would not be this thing where it was me trying to teach him or trying to change him, or him feeling like I was scolding him.”
The mechanism is ordinary and that is the point. Kate records what happened and what worked. It sits on the shared profile. Dan gets a notification. He reads it when he chooses, and nobody is being corrected.
“I will capture it in Understanding Zoe. He will see it. He will get little notifications. It stays present in a way that it does not become the primary thing about our relationship.”
Over time, Dan began to pull up the app. He did it when a tough moment with Theo needed insight, or felt worth capturing.
The turning point: the afternoon Theo was clipped by a car
Theo walked home from school, came in, and asked for the iPad. Then another parent from the school texted Kate to check he was all right. They had seen him brushed by a car on the way home. He had got straight up and run off. He had said nothing to Kate.
“I read that text and I am vibrating. I went straight into his bedroom. What happened? Are you okay? Why did you not say something?”
He did not want to talk about it.
“My instinct was, what is wrong with you? Why would you not talk to me about this?”
Then she stopped, and this is the moment the whole story turns on. Pip is the pocket coach inside Understanding Zoe. At that point Kate had barely used it.
“I had had just enough of a little interaction with Pip to think of it in that moment. I went back and I was like, okay, my instinct is clearly in conflict with what my child is responding to right now. I do not quite know what to do.”
She opened Pip and explained what had happened. What came back was not an instruction. It was the part she could not see. Pip explained that autistic people can under-react to big events. It said the iPad may have been Theo decompressing and processing, not dismissing it. Then it offered her a way in, step by step. It also named being frightened as a reasonable thing to be.
“It explained what might be going on for him. Here is the why, the underneath part, which is a mystery to me. It did not dismiss that. Of course you are scared.”
She tried it.
“I did what Pip suggested. And it worked really well. Theo actually did share, open up, respond. And I realised in that moment, if I had kept going in the way that I was socialised to do, I would have increased the stress. Theo probably would have had a meltdown. There would have been a big rupture between us. It resolved really healthily. It resulted in much more connection.”
What Kate does with Understanding Zoe now
Four things, and only one of them is about the moment itself.
In the moment, to cut through the noise
One message, sent while the hard moment is still happening. Pip already knows Theo and their patterns.
Afterwards, to think out loud
Kate is an external processor. This is the debrief between appointments with her psychologist. It does not replace them.
To save what worked, for Dan
Recorded after the event, on the profile both parents share. Dan finds it in his own time.
And to take stock of the good weeks
A day of great connection, or a new skill. Those go into the record too, so a hard month cannot erase them.
Help in the hard moment, and a debrief afterwards
Kate describes the state she used to be in during a hard moment. An instinctive response came first. Behind it was everything she had read, heard on podcasts or seen on Instagram. All of it was competing.
“It is not a great state of mind to be in when you are trying to help a kid manage a moment of stress, of dysregulation, of distress, of meltdown. Being able to drop in a message and get something that is informed about who Theo is, how he responds to things, what he needs, an understanding of our patterns, and just help to cut through that noise in your head in that moment of distress, is great.”
Afterwards is different work. Kate calls herself an external processor. She has a psychologist, and this is not that. It is the debrief in between. What happened, and what did she feel? What does she think she did well, and what did she do poorly? Does something need repairing?
“Pip has all this context. It is not sycophantic. Some people absolutely use chatbots and it just sort of validates everything. Pip can be gentle with me and then can also gently redirect for next time.”
She also names why this matters more than it sounds. The reaction can go somewhere that is neither her child nor her partner.
“It kind of almost allows you to do that thing that you need to do, that releases some of your tension and stress, but you are not putting it onto your child or to your partner.”
Saving what worked, so Dan can find it later
This is the piece that does the relationship work. It happens after the event, not during it.
“Being able to go through that and then have it played back, and have Pip capture it. Okay, let me capture the observation. Also, the way you handled this, this is a great strategy for next time, I am going to capture this too, so that if Dan encounters something in the future he can pull up Pip, and Pip has captured these things that I have done in the past. It does not rely on me narrating it to Dan and having him feel like I am trying to teach him.”
A year in, something else has happened that Kate did not expect. The app is not only holding the strategies. She is.
“I start to internalise some of the things that are probably a helpful way of doing it. So I am getting better too. I am actually building capability and it is helping to hone my instinct.”
What Kate also captures: the good weeks
Kate also uses it to take stock. At the end of a week or a weekend she goes back through what happened.
“One of the things that I have also really loved doing with the app is reflecting at the end of a week or a weekend that actually included a lot of really positive things: a day of great connection, or when Theo has really stepped into a new skill or interest.”
One of those new skills was cooking.
“When Theo really got into cooking independently for us as a family, that felt huge, and that was something that I spent time capturing and reflecting on with Pip.”
The ordinary stretches go in too, like a new show watched together. A period when Theo has capacity for more independence goes in as well.
“As a parent of a kid who can have really fluctuating support needs, it is so valuable to be able to have a place to reflect, capture, and take stock of the wonderful things as well.”
“When you are in the hard moments, you can forget those bright spots, so now I know that they are not forgotten. They actually become part of that record, and I really love that.”
Why Kate had said no to AI tools before
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. Understanding Zoe’s Information Security Management System was certified to ISO/IEC 27001:2022 by Prescient Security. Kate signed up when Understanding Zoe announced it.
“I was excited when I saw that you got the certification.”
The overlap Kate had to work out herself
Theo is autistic, ADHD and has a PDA profile, and he is gender diverse. Kate’s difficulty was never finding material about any one of those. It was that nobody writes about them together.
“People will create content or insight that is about being autistic, or being ADHD, or being PDA, or being trans or non-binary. But it is how those things often interact. I was just doing a lot of inferring, trying to create what is the thing that could be going on for my child that is all of these things together.”
Once she had described Theo fully, that stopped being her job alone.
“Even without me specifically prompting for it, it has offered, you know, there might also be something going on here that is about how Theo feels about how he looks, about his gender expression, how he is perceived. All those things. That has been really great.”
Dan sees what is underneath, without Kate in between
A year in, Kate points to a change she was not specifically looking for. It is between the other two people in the house. She told us about it after the recording had stopped. That is why the words here are ours, not hers.
Dan was never absent, and nobody told him to do anything differently. What changed is that he can see what is going on underneath a hard moment. He sees it in his own time, and Kate does not have to stand between the two of them to interpret it.
This is what Kate was asking for at the start. She did not yet have words for it.
In Kate's words
“I, like many mothers, was the one who did all the heavy lifting. I got really informed. I joined the communities. I read the books. And that is my style, that is my thing.”
“It became a neutral mediator. It would not be this thing where it was me trying to teach him or trying to change him or scolding him, or him feeling like I was scolding him.”
“It has meaningfully diffused tension and conflict, because I do not have to consciously send Dan a message about here is what happened, and for his rejection sensitivity to be triggered because he thinks that I am telling him how to parent.”
“You feel isolated. And it is an acutely familiar experience to many other people navigating a similar dynamic at home.”
Kate is not an outlier
Two things in her account are the norm rather than the exception.
The load, and who carries it. Understanding Zoe’s 2025 study covered 1,091 Australian families. Parents of neurodivergent children in it reported around 30 hours a week on caregiving. Nearly ten of those hours went on emotional regulation, advocacy and administration. Nine in ten feel misunderstood or invisible. Because of caregiving demands, 27% have turned down a promotion or an opportunity. In that study, 64% of parents of neurodivergent children said they feel exhausted. Among parents of neurotypical children, it was 42%. 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. That is 1.1% of the population, and up 41.8% on 2018.
The demand avoidance, specifically. Australia’s national assessment guideline, from Autism CRC, addresses PDA directly at Recommendation 45.8. It says demand avoidance should be understood as driven by an anxiety-based need for control. It should not be understood 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. Kate had to find it on her own before she found it in one place.
What the imbalance does to two parents. A claim is repeated constantly: around 80% of couples raising an autistic child separate. It has no research behind it. The honest picture is narrower, and still worth knowing.
Hartley and colleagues (2010) followed 391 families. They found a higher divorce rate among parents of autistic children. It was 23.5%, against 13.8% in a matched comparison group. The raised rate persisted into adolescence and early adulthood, rather than easing after childhood.
Freedman and colleagues (2012) looked at nearly 78,000 children in a United States national survey. They found no difference at all. Of the autistic children, 64% lived with two parents. Among children who were not autistic, it was 65%.
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.”
If some of this sounds like you
You are the one who reads the books and deals with the school.
You pass on what you learn to your partner, and it comes across as a correction.
In a hard moment with your child, everything you have read competes in your head.
When a hard month comes, the good days are easy to forget.
Understanding Zoe is an Australian app for neurodivergent adults and caregivers of neurodivergent children. You tell Pip what happened. Pip helps you make sense of it and keeps what helps in one private place. You do not need a formal assessment to begin.
7 days free. Cancel before day 8 and you won’t be charged. After that it is A$14.99 a month or A$119.99 a year. Pip chats are private to you.
Questions people ask
How do I stop being the only parent who researches our child's neurodivergence?
Kate's answer was to stop being the channel. Both parents use the same Understanding Zoe profile. Observations, patterns and strategies are recorded once, and both parents can read them. What she learns is written down where her partner can find it. She does not have to pass it on in a conversation neither of them enjoys.
My partner takes any parenting suggestion as criticism. What can I do?
Kate's partner experiences rejection sensitivity, so direct feedback in the moment reliably became conflict. Kate now records the observation in a shared place instead of saying it. That takes away the person doing the correcting. He reads it when he chooses, in his own time. It does not arrive as a judgement from her.
How many hours a week does caring for a neurodivergent child actually take?
Understanding Zoe's 2025 study covered 1,091 Australian families. Parents of neurodivergent children reported around 30 hours a week on caregiving. Nearly ten of those hours went to emotional regulation, advocacy and administration. That is the part nobody sees, and it is usually carried by one parent.
What is a PDA profile, and why does it change how I respond?
PDA describes a persistent drive for autonomy. Australia's national assessment guideline addresses it at Recommendation 45.8. It says demand avoidance should be understood as driven by an anxiety-based need for control. It should not be understood as a child being oppositional or defiant. That reframing changes the response from insisting to lowering the demand.
Is it safe to put my child's information into an app?
This was Kate's condition. She had refused every tool of this kind on privacy grounds. She did not want sensitive information about her family held by just any tech company. Understanding Zoe Pty Ltd operates an Information Security Management System. When Prescient Security certified it to ISO/IEC 27001:2022, she changed her mind.
Where do I find support for a child who is autistic, ADHD and gender diverse?
This was the hardest gap for Kate to fill. Plenty of material addresses each identity on its own. Very little addresses how they overlap for one child. Once she described her son fully in one place, it could hold the overlap too. Before, she had to infer it every time from separate sources.
About this story
- Names
- Kate, Theo and Dan are not their real names. The names were changed at Kate’s request to protect her son’s privacy.
- Source
- A recorded conversation on 3 September 2026. Every quotation is verbatim, with spoken filler removed and nothing else changed.
- Photographs
- There is no photograph and no recording of Kate on this page, at her request.
- Written by
- Laetitia Andrac, Understanding Zoe
- Published
- 4 September 2026
- Last reviewed
- 4 September 2026
- Next review
- September 2027
- Consent
- Published with Kate’s written approval, having reviewed every quote in context.
References
- Understanding Zoe, Making the Invisible Visible, 2025. A study of 1,091 Australian families with Sunday Insights and PureSpectrum. Link checked 3 September 2026. understandingzoe.com/white-paper/key-findings
- Australian Government Department of Health and Aged Care, National Autism Strategy 2025 to 2031, January 2025. Link checked 3 September 2026. health.gov.au
- Australian Bureau of Statistics, Autism in Australia, 2022, released 11 October 2024. Link checked 3 September 2026. abs.gov.au
- Autism CRC, National Guideline for the Assessment and Diagnosis of Autism in Australia, 2nd edition 2023, Recommendation 45.8. Link checked 3 September 2026. autismcrc.com.au
- PDA Society, What is PDA. Link checked 3 September 2026. pdasociety.org.uk
- Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., and Bolt, D., “The relative risk and timing of divorce in families of children with an autism spectrum disorder”, Journal of Family Psychology 24(4), 2010, pages 449 to 457. Link checked 3 September 2026. doi.org/10.1037/a0019847
- Freedman, B. H., Kalb, L. G., Zablotsky, B., and Stuart, E. A., “Relationship Status Among Parents of Children with Autism Spectrum Disorders: A Population-Based Study”, Journal of Autism and Developmental Disorders 42, 2012, pages 539 to 548. Link checked 3 September 2026. doi.org/10.1007/s10803-011-1269-y
Read next
- Understanding Zoe for familiesA shared profile, the village, and what happens to what you write down. How the app works when a household is carrying a lot.
- Autistic and raising autistic childrenMichael Coles keeps his family's reports, patterns and plans in one place. He keeps a profile for himself too.
- How we protect your informationThe certificate Kate was waiting for, what it covers, and where your family's information is stored.
- Making the Invisible VisibleThe 2025 study of 1,091 Australian families: the caregiving hours, the invisible ones, and who carries them.