This week my daughter turned five. For five years I have been now a full-time parent (since 2022 to 2 children) and for the last two and a half years I also became a full-time caregiver for my autistic daughter who was diagnosed with ASD level 2 in Spring 2023. It has been 1000 days since we first heard the clinical term ASD: Autism Spectrum Disorder. But until today I have not yet heard her say “papa” to me once, because she also has a secondary diagnosis of language impairment, so she is still considered non-speaking today. That absence — that one small word — is the hardest part on many days.

And yet, there is also so much hope. For months we now have seen meaningful new developmental steps: signing (ASL), sounds for word approximations, basic hand gestures that communicate her needs. Each one is a win. It has been a steep learning curve since 2023.

My Emotional Earthquake

Already before her second birthday (over 3 years ago), our local early intervention organization had found her eligible for services due to multiple developmental delays, especially regarding her social behavior and language delays. These were the first signs that her and our path would be different.

When the diagnosis became clear a few months later, I personally still was not ready. Today I know that I moved through the five stages of grief — denial, anger, bargaining, depression, acceptance. Over time, acceptance turned into embrace, because I stopped trying to get back to a “before” and started to be the best possible support for my child.

Two New Languages

Since then, I have been learning two new languages. One is literal: American Sign Language (ASL) — our bridge since day 1 when early intervention started 3 years ago. The other new language is the professional vocabulary of ASD across ABA, OT, and speech therapy: joint attention, expressive language, receptive language, sensory regulation, functional communication, prompting .. way too much to list it all here. The list is long and I am still learning new topics each month it seems. Words I once found intimidating help me today to collaborate with our daughter’s care team and advocate for best possible progress.

Unknown Unknowns

This journey is and will be full of unknown unknowns. As a parent you have to be aware of this and accept it as soon as possible. You become a researcher, advocate, project manager and negotiator. You learn to evaluate providers, to communicate clearly with a multidisciplinary care team at different providers and try to set SMART goals (Specific, Measurable, Achievable, Relevant, Time-bound) in order to hopefully achieve progress that is meaningful, visible and real, which means it can be generalized out from a clinical setting at home, on the playground, out in the community. Progress is not linear, but it is precious, every little thing counts.

The System We Navigate

I have come to see the bigger picture, not a “value chain,” but a support ecosystem and care pathways that so many families travel. It is s filled with dedicated people, yet too often very fragmented, confusing, and exhausting to navigate, especially for families who are just starting on this journey and have many other areas to focus on as well. I see opportunities to make it easier and kinder: seamless parent-provider communication, better data sharing, clearer next-step plans and tools that help families to anticipate instead of reacting. For me, it is very clear that software can empower families and reduce administrative burden on clinicians.

I have decided to devote the next 25 years — very likely the rest of my professional life — to building solutions that will help make this journey easier for autistic children and their families.

What I Want Other Parents to Know

If you are reading this and recognize similarities, even if your child did not receive a formal diagnosis yet, know this: You may pass through grief. You may feel lost. But you will also grow stronger than you have ever imagined. Please find people who can also support you, connect with your local ASD community. Document the small wins. Keep goals ambitious but achievable. And always remember: your child is not a project to complete, your child is a person to know and love.

The last 1000 days were the hardest and at the same time very likely the most meaningful days of my life. The next 1000 will bring their own new unknowns — and their own joy. I’m all in.