A letter to the parent who just got the diagnosis 💚
One week. That’s how long Anderson had his talker before he typed his name.
Then he typed several other words. Words I had no idea he knew.
I stood there in shock. For years I had talked to him, read to him, and modeled language every way I knew how. And all that time, he had been spelling in his head. His body just hadn’t had a way to show me.
That moment changed everything about how I understood my son.
Anderson was diagnosed with Level 3, nonverbal autism five years ago. If I could go back to that beginning, knowing what I know now, there are five things I would change. I’m sharing them in the hope that if you’re at the start of your own journey, one of these will save you some time, some heartache, or both.
And before we get to the list, I want to say this: I don’t regret the mom I was then. I was doing the best I could with what I knew. But I wish I had known these things sooner.
1. I would give him more ways to SHOW me what he knew
I talked to Anderson constantly. I read to him. I modeled language. I tried everything I knew to encourage communication.
What I didn’t know was just how much language he already had.
We didn’t introduce an AAC device with a keyboard until he was 4. On day one, he went straight to the typing feature and started typing words. Within a week, he could type his name and several other words on his talker.
Words he already knew. Words I didn’t know he knew.
Here’s what I wish I had understood: his body was blocking his ability to show us what his mind already held. He didn’t need to be “taught” language. He needed a way to SHOW us the language he already had.
If I could go back, I would introduce AAC much sooner. And knowing what I know now about his hyperlexia, I would have made our home even more language-rich: labels, written choices, whiteboards, and visual language everywhere.
Most importantly, I would have presumed competence from the beginning. I would have assumed there was more happening inside than he could show us.
Because communication ability and understanding are not the same thing.
If you’re just starting out: Presume your child understands more than they can show you. Talk to them like they understand everything, because they very well might. And if your child has a language delay, build a language-rich environment around them while you explore AAC options with a speech-language pathologist.
2. I would have learned about motor planning much sooner
I first learned about motor planning from our speech therapist and our physical therapist. They worked together with autistic kids, using motor coaching and using motor skills to help unlock language. It was eye-opening.
I hadn’t understood that some of the things Anderson couldn’t do, like pointing, talking, or drinking from a cup or straw, could be related to the difficulty his brain had planning and coordinating movement.
I’m still learning today. One of my favorite resources is Dr. Dana Johnson, an occupational therapist who shares so many helpful tips for families online.
The biggest shift for me was this: what we see the body doing isn’t always what the child wants to do. That body-brain disconnect can show up in so many everyday moments, like Anderson struggling to drink from a straw. He wasn’t refusing. His body wasn’t following the plan his brain made.
I wish I had understood sooner that “can’t” and “won’t” are not the same thing.
If I could go back, I would have looked for a therapist who understood motor planning and motor coaching from the very beginning.
If you’re just starting out: When your child can’t do something you expect them to be able to do, get curious before you assume it’s a behavior or a choice. Ask your therapy team about motor planning.
Autism and Dyspraxia: How Motor Planning Challenges Affect Children and What Helps
3. I would have made regulation a priority
We had weighted blankets. We had an indoor swing. I knew Anderson had sensory needs.
But I didn’t understand that regulation wasn’t something we worked on after everything else. It was the foundation.
It wasn’t until Anderson was around 6½ that I really began to understand nervous system support, and that what helped him regulate could change from day to day.
And here’s the part that took me the longest to learn, and the part I most want you to hear: regulation starts with the parent.
You have to tend to your own nervous system so you can co-regulate with your child. Your child borrows your calm. That means taking care of yourself isn’t selfish or an afterthought. It’s part of the work.
If I could go back, I would have started there, with myself first.
If you’re just starting out: Before you add one more therapy or one more goal, ask: Is my child regulated? Am I? Learning your own regulation tools and practicing co-regulation will make everything else easier.
How to Calm an Autistic Child Naturally: A Nervous System Reset That Changed Everything
4. I would have been much more intentional about finding the RIGHT therapists
We’ve had therapists who weren’t the right fit, and I’ll be honest: it was a setback.
If a therapist doesn’t work on connection and regulation first, the foundation isn’t strong. Anderson didn’t enjoy working with those therapists, so he wasn’t making progress. It cost us time, and it cost us some ground.
If I could go back, I wouldn’t stop at “Do you have experience with autism?”
I would ask:
- How do you approach therapy?
- Is it connection first? Is it child-led?
- Do you presume competence?
- Do you understand sensory needs and regulation?
- Are you keeping up with current research?
Because having autism experience doesn’t automatically mean someone understands your child.
If you’re just starting out: You are allowed to interview therapists. You are allowed to leave a therapist who isn’t a good fit. And pay attention to your child. They will tell you, in their own way, whether they feel safe and connected.
How Much Therapy Does an Autistic Child Really Need?
5. I would have spent more time joining HIS world
Instead of always trying to bring him into ours.
If we went to the playground and he wanted to shuffle mulch? I’d sit down and shuffle mulch with him. If he wanted to walk the perimeter? I’d walk it with him. If he was fascinated by something I didn’t understand? I’d get curious.
One of the biggest turning points for us was when we realized Anderson was interested in elevators. So we leaned all the way in. We decorated doors in our house so he could play elevators. We made custom elevator curriculums. We made special trips just to ride elevators.
When we stopped trying to pull him out of his interests and started stepping into them, everything about our connection shifted.
I wish I had learned sooner that connection doesn’t always mean getting our child to do what we want. Sometimes connection means stepping into their world and saying: “I’m here. I see you. Let’s do this together.”
If you’re just starting out: Notice what fascinates your child, and don’t try to redirect it. Join in. Interests are a doorway to connection, language, and learning.
How Video Modeling Helped My Autistic Son Learn Language (Gestalt Language Learner Story)
What my SLP degree didn’t teach me
I have a master’s degree in speech-language pathology, and I was a licensed SLP. You might think I walked into this journey fully prepared.
I didn’t.
I quickly realized how much I didn’t know. I didn’t know about gestalt language processing. I didn’t know about the connection between autism and dyspraxia. Being a professional didn’t make me an expert on my child, and learning alongside Anderson has been one of the humbling gifts of this journey.
So if you’re feeling behind or overwhelmed, please hear me: you are not behind. Nobody gets handed this map.
If I could sit across from you today
If you are at the beginning of your autism journey, here is what I would tell you.
First, accept your child exactly as they are right now. Look at them and know that even if nothing ever changes, you will always love them. That acceptance is the ground everything else grows from.
Second, focus on your own regulation and nervous system. Learn co-regulation strategies. Your child needs you steady more than they need you perfect.
Then, depending on your child, explore next steps. For many families that means GLP (gestalt language processing) support and AAC. And if there is a language delay, build a language-rich environment and always, always presume competence.
You are going to learn so much. You are going to make mistakes, and so did I. But your child is lucky to have a parent who is reading, learning, and showing up for them.
I don’t regret the mom I was then. I was doing the best I could with what I knew. And now, so are you. 💚
If this post helped you, I’d love to hear from you. What’s one thing you wish you had known at the beginning? Share it in the comments to encourage another parent who is just getting started.
