Newsletter #3 – Lucas Turns 30 – What 3 Decades Taught Me About Autism
Lucas Turns 30
What 3 Decades Taught Me About Autism
A few days ago, Lucas turned 30.
Every year when I post about his birthday, we get many well wishes—and often messages from moms telling me that Lucas’ journey changed their lives.
This year was no different.
But turning 30 feels different.
It’s a milestone that makes me stop and reflect—not just on Lucas’ life, but on the nearly three decades I’ve spent in the autism world.
First, as an RN and a confused mom in denial (which I wrote about in Newsletter #1, The Autism Tipping Point), and then as an autism professional helping millions of people around the world through my online videos, courses, podcasts, and books.
Lucas was just 21 months old when my husband first mentioned the possibility of autism.
I remember the shock.
At the time, I thought an autism diagnosis would mean the life I had imagined for my son—and for our family—would come to an abrupt end.
So I did what many parents still do today.
I put my head in the sand.
And while I was in denial for over a year, I didn’t realize that there was anything I could actually do to help turn things around.
As I wrote about in Newsletter #2, Lucas looked pretty typical at age two. He attended a regular toddler preschool a few mornings a week without any major issues. I held tightly to the hope that weekly speech therapy would be enough and prayed it was “just” a speech delay, ADHD, or even a hearing problem….anything instead of autism.
The possibility of autism terrified me.
What I didn’t realize then was that the confusion, denial, and journey of figuring out how to help Lucas would shape the next 30 years of my life in every possible way.
We Need to Stop Treating Autism Like It’s 1999
I always say I “fell” into the autism world in 1999 when Lucas was diagnosed with moderate-to-severe autism because it literally felt like I had fallen into a deep hole—with Lucas on my back—and I had to figure out how to climb out with very little help and no clear ladder.
And here’s the hard truth:
In many ways, parents like you today are still being pushed into the same kind of delay I experienced back in the late 1990s.
Yes, now we know more about autism.
Yes, there are more therapies.
Yes, there is more awareness.
But in many ways, we’re still treating autism like it’s 1999.
You are still being told to “wait and see.”
You’re still being falsely reassured that “he’ll be fine.”
And don’t get me started about waitlists.
You’re still waiting 9 months, 12 months, or even 2 years for evaluations—and often even longer for therapy to begin—while your child’s most critical developmental window slips away.
And once you finally get help?
Too often it looks like this:
One hour of speech.
One hour of OT.
Maybe an hour with a teacher.
And everyone acts like that’s enough.
It’s not.
Not when a child is struggling to communicate.
Not when tantrums, sleep issues, picky eating, potty training struggles, and unsafe behaviors are taking over daily life.
Not when you are desperate for answers and spending hours scrolling social media trying to figure out what to do next.
This is exactly why I created the system I wish I had when Lucas was little.
Because you don’t need more confusion.
You need clarity.
You need a way to assess what’s really going on.
You need to know where to start.
And you need a plan you can actually use at home—right now as soon as you notice possible delays or get a diagnosis, not after months or years of waiting.
The First Step to Solving Any Problem
Whenever any of us has a health problem or an issue with our house or car, the first step is assessment.
Most people, both parents and professionals, think that when I say assessment, this needs to be done by a professional in a clinical setting.
Years ago, I used to recommend getting a professional assessment at the first signs of any delays or signs of autism. I used to tell parents to make a sick appointment at the pediatrician’s office, to schedule a multidisciplinary evaluation with their local early intervention provider, and to get on an ABA waitlist as soon as an autism diagnosis was confirmed.
But, this often starts a spiral of “leave it to the professionals” that is keeping us stuck in the old way (circa 1999) of detecting and treating autism.
One of the biggest problems I’ve seen over the decades is this:
Until now, there has been no simple assessment parents can use quickly and easily—without special expertise, materials, or cost—to identify a child’s strengths and needs across the most critical developmental areas.
Yes we do have standardized tests and tools, such as the ADOS that help identify if a child has autism or not, and some other tests, such as the Vineland and the VB-MAPP, to assess a child’s abilities in the areas of self-care, language, and problem behaviors.
But these evaluations and standardized tests can be costly, need to be done by professionals with advanced training, usually have long wait times to perform them, and are not easily accessible to parents to do on their own or with professional support.
That’s why I created the Barbera Early Childhood Assessment (BECA)®.
The BECA is a quick, powerful assessment (which you can complete for free now) designed to help parents and professionals understand exactly where a child is at in three key areas:
Language and Learning
Self-care skills
Problem behaviors
Because here’s what I know after nearly 30 years:
You cannot create the right plan if you don’t know your starting point and you cannot tell if an intervention is working unless you have a way to measure pre- and post- levels.
And you should not have to wait months—or years—for someone to help you figure that out.
After partnering with a software company and investing more than $50,000 to build and test the BECA a few years ago, we’ve now had over 70,000 unique users and collected more than 3 million data points from children with autism and toddlers showing signs of autism or developmental delays.
That tells me two things:
First, parents are looking for answers.
And second, they’re tired of waiting.
But assessment alone isn’t enough.
That’s why the BECA is just part of Step 1 of my 4-step child-friendly approach. I’ll talk more about the other steps in future newsletters.
From the Hole to Higher Ground
Back when Lucas was young and we were at the bottom of the deep hole, I didn’t know how to assess or how to teach him.
He had some words, but I had no idea how to get him talking more.
I didn’t know how to stop him from taking his clothes off in the middle of the day.
I didn’t know what skills mattered most.
I didn’t know how important parent-led intervention could be to use during most of his waking hours – at home, in the tub, at the playground, in a store, at mealtime, and bedtime.
I thought professionals would figure it out for me.
But what I learned—and what I teach now—is this:
Parents have far more power than they realize.
And when they stop waiting and start taking the right action, everything can change.
As a registered nurse, I know that after a neurological condition occurs –such as a stroke or brain injury, we refer to “the golden year,” which is the first year after injury when the brain is most “plastic” and the most rapid gains can be made.
But in the autism world, almost everyone misses the first golden year by waiting, either parents like me who are or were in denial or waiting for a diagnosis or deciding when and how to act, which takes time.
In my Turn Autism Around book, I reference a study showing that on average kids aren’t diagnosed until 4 or 5 years of age even though signs usually show up and are noticed by 18 months or two.
Also, because of this waiting, about half of all children with autism don’t have any therapy until they start elementary school.
And by that point, many have severe language and behavioral disorders and in some cases, intellectual disability (with IQs under 70).
This is because their autism symptoms were not detected and/or treated early enough which is why prevention is such an important topic.
There is no time to wait and worry. As Dr. Ami Klin and other researchers suggest, we need to repair the back-and-forth joint attention and communication skills as quickly as possible and prevent and reverse the language, cognitive, and behavioral symptoms that often co-occur with autism.
Why Families Trust Me
Over the years, I’ve realized something important:
There are a lot of voices in the autism world.
A lot of opinions.
A lot of noise.
A lot of people telling parents what they should or shouldn’t do.
And it’s overwhelming.
That’s one reason I’ve dedicated my life to cutting through the noise and helping families focus on what actually matters.
Not politics.
Not blame.
Not endless debates.
Progress.
Helping children communicate.
Helping them learn.
Helping them sleep.
Eat.
Use the potty.
Stay safe.
Reduce tantrums and aggression.
And become as independent and as happy as possible.
What makes my perspective different is that I don’t just come at this from one angle.
I’m a registered nurse.
I’m a doctoral-level Board Certified Behavior Analyst.
I’m the author of two bestselling books in dozens of languages.
I’ve hosted hundreds of podcast episodes and trained families and professionals from over 100 countries.
But more than anything…
I’m Lucas’ mom.
I know what it feels like to be scared.
I know what it feels like to hope your child will “catch up.”
I know what it feels like to waste precious time because you don’t know what to do.
And I also know what it feels like to build a life around helping not just your own child—but thousands of others.
My second son, Spencer, is now a physician.
Lucas still requires 24/7 care.
Same home.
Same parents.
Very different outcomes.
That reality has taught me something powerful:
Autism is not one thing.
And no two children will have the exact same path.
But what I know for sure is this:
Waiting rarely helps.
Taking the right action does.
Stop Scrolling. Start Acting
If there’s one thing I want you to take away from Lucas turning 30, it’s this:
Please don’t spend a year doing what I did.
Don’t put your head in the sand.
Don’t wait for one professional to tell you exactly what you should do (because that professional doesn’t exist and won’t be coming to save the day).
And don’t continue to spend hours on social media trying to piece together free tips and tricks.
Scrolling won’t teach your child to talk.
It won’t stop meltdowns.
It probably won’t do much to help with picky eating, sleep struggles, potty training, or unsafe behaviors.
An individualized plan you create will.
That’s why I’ve built multiple ways to help—because not every family or professional needs the same level of support.
If you’re looking for a proven step-by-step system you can implement on your own, my courses and membership can help you learn exactly how to assess, plan, teach, and track progress using my 4-step approach.
These programs are designed for parents and professionals who want practical strategies to increase communication, decrease problem behaviors, and improve everyday life skills.
And if your child has more urgent or complex needs—or you want more personalized guidance—we also offer high-touch coaching (by application only), where my team and I can review your videos, your assessment, and your child’s unique needs to help you go faster with more support and direction.
No matter where you are in your journey—with or without a diagnosis of autism—regardless of age or exact ability level – it is never too early or too late to take the right action.
The key is to stop waiting.
Because progress doesn’t start with waiting.
It starts with action.
About the Author
Dr. Mary Barbera, RN, BCBA-D is a best-selling author, award-winning speaker, and Board Certified Behavior Analyst with a Ph.D. in leadership. As both an autism mom and professional, Mary brings over 25 years of experience helping thousands of parents and professionals around the world. She is the author of two best-selling books in dozens of languages, including her newest book, Turn Autism Around: An Action Guide for Parents of Young Children with Early Signs of Autism. Through her books, online courses, and podcast, Mary empowers families and professionals to increase talking, reduce tantrums, and improve life skills in young children with autism or signs of autism.