The First of Your Kind: Parenting an Autistic Child Without a Map
When you’re the first in your family to raise a neurodivergent or disabled child, there’s no handbook. No roadmap. Just you… walking a path you never expected, often feeling like you’re doing it alone.
I heard another mum say on TikTok recently, “One of the hardest parts of raising an autistic child is being the first in your family to go through this.”
And she’s right. It’s a particular kind of loneliness… one that sits quietly between love and grief, between fierce advocacy and deep exhaustion.
When you have a baby, you usually have generations of wisdom to lean on - mothers, grandmothers, friends who reassure you that you’re doing fine. But when your child’s needs don’t fit the familiar scripts, that reassurance disappears. The people around you mean well, but they don’t have the answers. They can’t offer guidance, because they’ve never walked this road.
You become the mapmaker.
The translator.
The bridge between worlds.
When the Life You Imagined Starts to Disappear
For me, it began with subtle noticing. My son was withdrawing, not responding like the other children. It wasn’t dramatic… just quiet, small differences that only I seemed to see.
And then came the isolation of lockdown. There was no one to compare notes with, no one to talk to besides my husband, who was just as uncertain and afraid.
The roadmap I’d imagined - the one I’d subconsciously drawn through pregnancy and babyhood - started to fade. The grief that followed wasn’t about him. It was about losing the ease, the shared experiences, the familiar guideposts of motherhood.
Everyone around us carried on as though nothing had changed. But my world had tilted.
No one else seemed to notice.
When Well-Meaning Advice Hurts
If you’ve ever been told “He seems fine to me,” or “Maybe it’s just a phase,” you’ll know how heavy those words can feel. They’re offered as comfort, but they often land like judgment.
Everyone wanted to help, to fix, to explain.
“Who else in the family is autistic?”
“Maybe he just needs more structure.”
“You should try ABA.”
Each suggestion reminded me that no one saw what I saw. No one held the same truth of him that I did.
And yet, amidst all the confusion, I reached out to one friend. She’d walked this road before. She came to my house, sat in my back garden (Covid lockdown after all!), and gently talked me through the next steps: assessments, therapy, persistence. It was the first time I didn’t feel so utterly alone.
From that day, I became the advocate, the researcher, the voice in meetings, the calm and the storm. Fear turned into control; control into survival.
It’s only now, looking back, that I can see how much I was remaking myself in the process.
The Matrescence No One Talks About
Matrescence - the emotional, physical, and psychological transformation into motherhood - looks different for those of us raising neurodivergent children.
It’s not just nappies and night feeds.
It’s IEPs and therapy plans.
It’s holding your child through meltdowns while holding yourself together through the judgment.
It’s the kind of becoming that happens in the shadows. When your child is misunderstood. When professionals talk about them instead of to them. When even your partner doesn’t always parent the same way, and the tension lingers quietly in the air.
Through my training with Amy Taylor-Kabbaz and Mama Rising, I began to see how matrescence applies here too. The identity loss. The self-silencing. The quiet rage at systems not built to support us.
We are mothers in the truest sense… but we are also advocates, educators, and emotional scaffolding for everyone around us. And that changes you.
The Sensory World and the Hidden Messages
My son’s world is sensory-rich, full of movement and energy. Climbing, bouncing, running… it’s how his body speaks.
To others, it looks like misbehaviour.
To me, it’s communication.
At school, his need to move can be mistaken for defiance. His dysregulation mistaken for aggression. But what I see is a child doing his best in an environment that often asks him to be someone he isn’t.
And so I interpret. I explain. I soften the edges of misunderstanding.
But the emotional toll is immense… carrying the invisible weight of translating your child’s world to everyone else’s expectations.
Presuming Competence, Rebuilding Connection
Everything shifted when we began Spelling to Communicate. For the first time, someone looked at my son and saw intelligence, not deficit.
They presumed competence.
That single shift changed how I saw him… and how I saw myself. It reminded me that he didn’t need to prove his worth for it to exist.
We found connection again… not because he changed, but because I did.
The Weight of Advocacy and Invisible Labour
Being the first means constantly standing in the gap between your child and their teachers, your family, your community.
It’s the emails, the paperwork, the therapy schedules, the unending emotional vigilance. And while it’s rarely said out loud, that labour falls mostly on mothers.
“She’s overprotective.”
“She’s obsessed with diagnoses.”
“She needs to let go.”
I’ve heard it all.
And if you have too… I see you.
What Helped Me
The loneliness never truly disappeared, but it changed shape.
It softened when I began to understand that what I was experiencing wasn’t personal failure, but part of a larger story - one rooted in culture, systems, and expectations.
It lightened when I connected with other mothers who didn’t need me to explain.
It lifted when I stopped asking, “What’s wrong with me?” and started asking, “What happened to me?”
You’re Not Broken. You’re Becoming.
If you’ve felt like you’re failing… like you’re doing motherhood “wrong”… hear this:
You’re not broken.
You’re not failing.
You’re becoming.
Becoming the mother your child needs.
Becoming the advocate, the translator, the anchor.
It’s messy and lonely, but it’s also sacred work.
You are part of a quiet revolution… rewriting what motherhood can mean for families like ours.
From Grief to Purpose
In time, my grief became purpose.
This blog, the podcast, this work… it was born from that ache. From wanting no other parent to feel like they were walking this road alone.
We talk often about resilience. But I think what we’re really cultivating is tenderness - the strength to keep showing up with love in a world that doesn’t always make space for our children.
That’s not just endurance. It’s love, in its most radical form.
A Final Reflection
If this is your story… if you’re the first, the only, the one figuring it out as you go… I want you to know: you are not alone.
This is a kind of matrescence. A transformation.
It’s painful, yes. But also powerful.
Every step you take clears the path a little more - for your child, for yourself, and for those who will come after.
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If this story resonates, you might find my free guide The First 30 Days especially grounding — a gentle companion for those early weeks after diagnosis. Download it here →
