The Truth About Community Programs: What Parents of Neurodivergent Kids Want You to Know
Estimated Reading Time: 3-4 minutes
If you run a community program for children, you probably have families who come and go.
Sometimes, it’s easy to guess why a child stops showing up. Other times, you might sense something wasn’t quite working, but you aren’t sure how to change it.
Recently, I asked parents of neurodivergent children about their experiences in mainstream community programs. I know my own family’s experiences, but I wanted to understand what was happening in different families and different contexts. The answers were so honest, and quite sad. They confirmed something that all community organisations should understand: most families aren’t leaving because they want to. They are leaving because their child’s needs aren’t being met.
Neurodivergent Participation Parent Survey
Through my survey, I heard from parents of children with Autism, ADHD, and AuDHD, many with co-occurring conditions such as sensory processing delay, intellectual disability, global developmental delay and anxiety. Their children attend (or have previously attended) programs like sports, dance, scouts, clubs, and school holiday activities.
The more responses I read, a pretty clear picture emerged. EVERY parent said their child experienced sensory or regulation challenges in these settings. More than 80% faced communication difficulties at least some of the time. Over half have withdrawn their child from a program due to a lack of support.
Here are some of the things parents told me:
On communication:
“Overwhelmed, so not able to express how they feel. And so many kids are not able to get the attention of a grown-up.”
“Children not wanting to respond or answer when uncomfortable”
On triggers:
“Sudden changes without warning could trigger his anxiety and panic.”
“Lack of transition time, changes to routines.”
On what helps:
“Give space and time to the child to calm himself down.”
“Being able to step out and take time.”
On social challenges:
“He has been trying his best to catch up with the programs, like trying to copy or engage as much as he can, but because his lack of social interaction skills, he found it’s challenging when the others are not understanding him.”
On why they withdraw:
“It doesn’t seem to benefit him as his needs are not met.”
“I don’t like other kids being uncomfortable by my child’s actions. I don’t like sending my child somewhere they’re not comfortable.”
One parent broke my heart as she summed it up simply: when asked what had helped their child feel included, she responded “Nothing really.”
The Deeper Story
When I read these responses, I didn’t see parents who expected perfection from community programs. I saw parents who want their children to be understood. They want programs where their child can participate without constantly being overwhelmed.
Many parents told me they feel “somewhat confident” about advocating for their child. But even then, they felt program leaders only understood their child’s needs “sometimes.” It was really clear to see that these parents are navigating systems that weren’t designed with their child in mind. And they’re doing it mostly alone.
It’s important to remember that inclusion isn’t just about having a policy. It’s about how a child feels in the environment. Do they feel safe? Do they have somewhere quiet to regulate? Do they know what is happening next?
When those things aren’t in place, and neurodivergent children struggle to fit in, families quietly step away.
Practical Takeaways:
If you are running a children’s program, these insights aren’t meant to criticise you! Most organisations are doing their best with limited time and resources. The parents I spoke to want to work with you. They want their children to belong.
Here are a few practical starting points based on what parents told me:
Give children time. Time to transition, to process instructions, and to calm down without pressure.
Create a calm space. A quiet corner or the ability to step out for a few minutes can make all the difference.
Use clear, predictable routines. Sudden changes are hard. If something is going to change, let families know beforehand where possible. Let children know what to expect at the beginning of each session.
Ask parents questions. Every child is different. A quick chat before the term starts or on enrolment can help you understand what a child needs to feel safe.
Notice the small wins. One parent shared that their child attended a community sports program just hoping for a certificate each week, although was disappointed to never receive one. Recognition matters, even in small doses.
A New Resource for Parents (And Why It Matters to You)
These survey results made me realise that parents need more than just hope. They need practical tools to navigate the system.
So I have started developing online courses for parents. The first one is called Finding the Right Community Program for Your Neurodivergent Child, and will include downloadable scripts and checklists to help parents communicate with program leaders and choose environments where their child can thrive.
I’ll share more about these courses in my next post.
But here is why this matters for you as a program leader: when parents feel equipped to advocate, and when programs are ready to listen, children get to stay. And that’s what everyone wants.
You Don’t Have to Get It Perfect
If you are reading this and thinking, “I don’t know where to start,” that’s okay! You don’t need to have all the answers. You just need to be willing to ask the questions and make small, thoughtful adjustments.
The parents I spoke to want the same thing you do: for children to feel included, valued, and supported.
If you would like to talk about how to make your program more inclusive - whether through an audit, a program review, or a simple consult - I’m here to help. No judgment. Just practical support.
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Blog post image from Pixabay.
