I’ve been thinking of writing a blog on this for a while, and then this morning I saw yet another reply to a post shaming a parent for using the “wrong” terminology.
It struck me how sometimes Autistic people, or even other parents who are a bit further on in their journey, forget that we were also there once.
Full disclosure: I was that parent once and this blog feels very exposing but also necessary.
Those Early Days
Twenty years ago, when one of my children was first diagnosed Autistic, I had no knowledge whatsoever of Autism. I was a widowed single parent with four kids, desperately trying to juggle everything.
There were meltdowns—sometimes violent ones—on top of the endless lack of sleep. There was constant pressure to fight for services, often feeling like I was hitting a brick wall at every turn. There were school meetings that left me feeling smaller, unheard, or even blamed. And meanwhile, I was trying to meet the needs of four children, often at the cost of my own health.
There were days I was close to complete exhaustion. My body might have been moving, but inside I was running on empty. Like so many parents in that situation, I was just surviving. And back then, in the middle of that relentless storm, the idea of a “cure” for Autism would have seemed attractive—not because I didn’t love my children as they were, but because I was desperate for life to feel more manageable.
Things I Once Believed
I was that parent who decided to have her last child’s MMR vaccine split into three doses, “just in case” vaccines caused Autism—because my third child had regressed, stopped talking, and lost eye contact around the time of his own MMR.
I was also that Autistic person who once said “with Autism,” because at the time I was struggling with the idea of my Autism defining me. I had absorbed society’s message that Autism was somehow separate, something extra I carried around rather than part of me.
And I embraced the puzzle piece symbol, because I didn’t understand why people objected to it. It felt to me then like a simple recognition of difference.
I can look back now and see that those views came from a lack of knowledge, a lack of support, and not having yet connected with the wider Autistic community.
Where We Are Now
Today, things look very different.
I have learned that if my children’s needs are met, they can be happy. That is the goal—not to change them, not to force them into boxes that don’t fit, but to build an environment where they can thrive.
Take Ollie, for example. He now lives in a residential home with two carers supporting him 24/7, so that he can be safe and flourish. Do I sometimes wish he could be independent, have a job, be in a relationship? Of course I do. Which parent doesn’t wish those things for their children? But my biggest wish—the one that truly matters—is simply that he is happy with his Autistic needs met.
It has been a long, painful journey to reach this point. I fought like crazy for our family’s needs to be recognised. Too often, services had their own agenda or were constrained by funding issues. The result? Families like mine left without the support we so desperately needed.
The older children’s needs were often neglected because their siblings’ challenges always seemed to take priority. Ollie was even sectioned for a year—a period that left deep scars but also highlighted just how wrong the system can get it.
Now, finally, he lives in an environment that truly meets his needs, and it is clear to see he is happy.
What I’ve Learned
Looking back, I now understand that I struggled not because of my children’s Neurodivergence, but because as a family we were never given the right support. Exhaustion, desperation, and hopelessness are not inevitable parts of raising Autistic children—they are the by-products of systems that fail us.
I also now understand more about language and symbols.
I said “with Autism” because I thought Autism was an add-on, something separate from me. I didn’t realise that Autism shapes every part of how I experience the world, and that to separate it is to deny a core part of my identity.
The same is true with symbols. Years ago, I embraced the puzzle piece because I didn’t know any different. I thought it was just a sign that represented Autism. What I now understand is that the puzzle piece has a painful history. It was first used in the 1960s alongside ideas of Autism being a “mystery” to be solved, something broken or incomplete. Later, it became tied to organisations that framed Autistic people as problems to be fixed or tragedies to be prevented. Many in the Autistic community reject it because it carries those messages of deficit and stigma.
That doesn’t mean I judge the parents who once embraced it—I was one of them. It means that now, with more understanding, I can see why we need symbols that come from Autistic voices, not from outside organisations deciding for us.
And as for vaccines? I now know that regression around the time of the MMR vaccine is simply a coincidence. Many non-vaccinated children also experience regression, because it is likely linked to changes in the brain—not to vaccines.
My Message to You
So yes, I am passionate about educating people and advocating for what feels right. But I would never do it in a shaming way. Shaming parents or professionals who are only at the beginning of their journey helps nobody. In fact, it drives people away from learning and connecting.
If you are a parent at the start of this road, you are allowed not to know everything. You are allowed to feel lost, overwhelmed, even scared. You are allowed to make choices that you later look back on differently. That is how learning happens.
If you are a professional, please remember that families are often drowning. They don’t need judgment, they need understanding, compassion, and practical support. And most of all, they need you to listen—not to follow an agenda that suits the system better than the child.
If you are an Autistic person at the beginning of your own self-discovery, please know that it’s OK to be where you are. It’s OK to change your mind. It’s OK to evolve in how you understand yourself and your identity.
We don’t wake up one day with all the knowledge, all the right words, all the insight. It takes time. It takes connection. It takes lived experience.
We Were All There Once
I can look back now with compassion on the parent I was—the one who was exhausted, overwhelmed, desperate, and clinging to whatever answers she could find. I was doing the best I could with what I knew at the time.
And that is all any of us can do.
So if you take anything away from this blog, let it be this:
It is OK not to know. It is OK to be learning. It is OK to stumble and get it “wrong” sometimes. Because we were all there once.
