When My Children Were Diagnosed with Autism

I’m not only a Behavior Analyst and the CEO of an ABA organization.

I’m also a mom of two children on the autism spectrum.

And I want to start there — because no amount of professional training prepares you for what it feels like when the diagnosis is your own child.

I remember sitting in appointments, listening to recommendations, acronyms, and plans. ABA. Speech. OT. Hours. Goals. Data. Everyone was well-intentioned. Everyone was focused on helping my children.

But very few people asked how we, as parents, were doing.

Autism Doesn’t Enter Just One Life — It Enters the Whole Family

What I learned quickly — both personally and professionally — is that when a child is diagnosed with autism, therapy doesn’t just enter the child’s life. It enters the entire family system.

Research consistently shows that parents of children on the autism spectrum experience significantly higher and more persistent levels of stress than parents of typically developing children or children with other disabilities (Hayes & Watson, 2013).

Importantly, this stress does not automatically decrease once services begin — in many cases, it increases.

Because now you’re not only parenting — you’re coordinating care, implementing strategies, advocating, worrying about the future, and trying to hold everything together.

When Caregivers Struggle, Treatment Struggles

As ABA professionals, we are trained to focus on behavior change and outcomes. And that work matters deeply.

But from the parent side, I can tell you this: when caregivers are overwhelmed, exhausted, or emotionally struggling, even the best treatment plans become hard to sustain.

This is not a failure of parents. It’s a limitation of how services have traditionally been structured.

Education Helps — But Support Is What Sustains Change

Over the years, both as a clinician and as a mother, I’ve seen how powerful it is when caregivers are truly supported — not just trained.

Research on parent-mediated and caregiver-implemented interventions shows that when parents receive meaningful education and coaching, children demonstrate better generalization and more durable gains over time. At the same time, parents report increased confidence and reduced stress (Bearss et al., 2015).

But confidence doesn’t come only from knowing what to do. It also comes from being emotionally supported while learning how to live this life.

Acceptance Is Part of the Work

Many parents are still processing grief, fear, and uncertainty long after services begin.

Acceptance and Commitment Therapy (ACT) research highlights the importance of psychological flexibility — the ability to experience difficult thoughts and emotions while still engaging in values-based action. Studies with parents of children with autism show that increases in psychological flexibility are associated with improved coping and engagement in treatment (Blackledge & Hayes, 2006).

This emotional work is not separate from treatment. It directly impacts it.

Why Caregiver-Led Models Changed Everything for Me

This is where caregiver-led models changed everything for me.

A caregiver-led approach doesn’t ask parents to become therapists. It invites them to become partners — supported, educated, and human. Learning happens in real life, not just in sessions. Support includes emotional regulation, acceptance, and permission to struggle.

In my experience, when caregivers feel supported, children benefit more consistently. Progress becomes sustainable. Families stay engaged. And therapy becomes something that fits into life — not something that takes it over.

How This Shapes the Future of ABA

As a CEO, this has shaped how I build services.

As a mother, it has shaped how I measure success.

The future of autism care cannot rely solely on child-focused hours and data points. It must recognize that family well-being is a clinical variable.

Caregiver-led models are not about doing less ABA.

They are about doing better ABA — grounded in reality, compassion, and partnership.

And for families like mine, that difference is everything.

Let’s Talk

If you’re an ABA professional, psychologist, or provider working with families on the spectrum, I’d love to hear your perspective.

How are you currently supporting caregivers beyond behavior goals and session hours?

Where do you see the biggest gaps in our current service models?

Let’s start a real conversation in the comments.

References

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642.

Bearss, K., Johnson, C., Handen, B., Smith, T., & Scahill, L. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder. JAMA, 313(15), 1524–1533.

Blackledge, J. T., & Hayes, S. C. (2006). Using Acceptance and Commitment Therapy in the support of parents of children diagnosed with autism. Behavior Therapy, 37(4), 415–423.