Here’s What I Wished I Knew When My Kid Was First Diagnosed as Autistic

hen your child is identified as autistic, most parents believe they need to learn a monumental amount of information in order to support their child. I definitely took that approach when my kid was first diagnosed. 

But in hindsight, if you really want to help your child, an unlearning must occur. 

Most parents begin to observe that autism might be present in a child when developmental milestones are not met at the typical times. This often creates fear and anxiety within the parent.

This looks like: “She should be talking by now” or “Why isn’t he playing with kids at the playground?”

This is what happened with my child. It appeared everything was “normal” and then, around 17 months, we saw a regression in speech, as well as sensory processing differences that were no longer quirky; they were intruding on his quality of life and ability to access a typical education.

There was no doubt my son was growing and learning, but he was doing so in a way that caused alarm because it was not typical.

The alarm was that he appeared autistic, when previously he didn’t seem to be. 

I was always taught that early intervention was the key to a child’s success. I was counseled about the “warning signs” of autism and how it needed to be “treated” right away, or else….

This right there is what people need to unlearn.

The way autism is described to parents makes it seems like a disease that can grow and take over an entire person, somehow locking them away from meaningful relationships and joy. 

Unlearning that approach and asking better questions will yield far greater results. 

Better questions are: is your child developing? What external factors could be preventing development? Are you aware of your child’s sensory needs? What do you know about the autistic mind and how it differs from a neurotypical mind?

If you can answer these questions first, the fear will begin to dissipate. Autism is a disability because of the world we live in. The timetable pushed from the medical and educational community might leave your child out. 

Do not get me wrong, milestones are important markers, but if your child is autistic and not meeting milestones at the prescribed timetable please do not fear. 

This requires a great deal of courage because many parents are shocked by an autism diagnosis in the first place. Additionally, asking questions to people in positions of authority like school officials and medical providers is often perceived like challenging authority. 

Some questions I had to ask: How does one “treat autism”, exactly? If we don’t approach it like a disease, what else will happen? How do I intervene in autism, exactly? What am I intervening in, exactly? 

Years later, here’s what I wished I was told when my kid was first diagnosed: 

  1. Developmental milestones are approximations of appropriate progress. 
  2. Milestones are based on the neurotypical standard that dominates parenting books, and they shape our perception of acceptable development. 
  3. Our whole educational system is based on a neurotypical timetable that leaves very little space for neurodivergent thinkers who develop outside the typical. 

It’s for this reason my spouse and I feared for our son’s future. We were very explicitly told that autism was serious. We were coached that his natural way of processing information was something to extinguish as best we could with “early intervention” that could reduce “symptoms” of autism. 

The autistic way of processing the world is not a disease. Approaching your child as though this is the case is precisely how you damage and traumatize them. Autism is not the problem; our way of thinking about it is.

Our entire system is based on an expectation of socially accepted time and space for our children. If your child has been diagnosed as autistic, I understand the fear and concern you might be having, especially if you have not paid close attention to autism before. But very likely your child will not develop typically because your child isn’t typical. That isn’t a problem unless you judge it to be one.

If your child doesn’t develop at the same rates as others, doesn’t mean development isn’t occurring. 

And maybe they speak later, or achieve gross motor skills later. So what? 

Maybe they’ll need additional support like speech or occupational therapy that helps with the acquisition of those skills. So what? 

Your child isn’t broken. I bet your child has other gifts that are never asked about or measured on a pediatric chart. But you could chart them if that’s what’s needed to celebrate. And you need to celebrate them just as all children need to be celebrated for exactly who they are. 

Parents must get used to the idea that the way their child grows could look different than others, and that’s perfectly fine. 

I remember very vividly a time when I was taking my then three year old to daycare. I was constantly worrying about his lack of speech and what I would do. I worried about his intelligence multiple times per hour. “What is happening inside his mind? Why can’t he repeat after me? What is happening? He used to make sounds, right?”  

I buckled him in and got in the car, and he began making all kinds of sounds as I began to reverse the car. I said, “what’s wrong?!”, surprised by the sounds he made. 

My first inclination was that we were in a rush, and stopping for what seemed like “nothing”. We were always running late, and I was stressed. And yet, I could not help but be shocked by this unusual interaction.

He kept making the sounds, never ceasing until I put the car in park. At the time, he struggled to point, which is a common issue for autistic children. It seemed he was alerting me to the front of the car, so I opened the door and saw my coffee mug resting on the hood of my car. I could not believe he noticed that and that he felt compelled to alert me. 

In that moment, I was overcome with emotion.  I realized my son notices so much he probably cannot begin to say all the things he observes. I felt so proud of him, and if I am honest, I was proud of myself. Instead of writing off his attempt to communicate, I listened to it. It was different than his sister, but he was engaging me as best he could. 

That moment was transformative. I began to witness all kinds of tiny interactions he was making; I was oblivious to them because of my expectations of how it should be. 

From that moment, I shifted and I write this in the hopes that you will too.

Thank you for being here!

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