Awareness of autism has never been higher, yet Lisa argues we are still in the dark ages when it comes to genuinely understanding the diagnosis itself. Drawing on her experience as an autism sibling, eighteen years of parenting, and coaching more than a hundred moms, she lays out where we are, why it matters to you, and what is changing in her own coaching business.
Lisa shares candid personal stories about navigating conflicting medical advice, the limitations of ABA therapy for her teenage son, and the real-world consequences of SSRIs prescribed without autism-specific knowledge. She also highlights examples from her coaching clients — including mothers whose children were diagnosed with everything except autism for years, and a mom whose own observations led to a PANS/PANDAS diagnosis that doctors had missed entirely.
This episode is a grounding, no-nonsense look at where we actually are in our understanding of autism, and what that means for you as the person closest to your child.
IN THIS EPISODE YOU’LL LEARN:
- Why awareness campaigns and feel-good stories don’t add up to real understanding of autism.
- How the gap between awareness and understanding shows up in the daily lives of autism families.
- What Lisa has been building in the 2.0 version of her coaching work after six years and more than a hundred clients.
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TRANSCRIPT
You’re listening to episode 198 of The Autism Mom Coach: What Every Autism Mom Needs to Know in 2026. Autism Awareness Month is in full swing. The walks, the events, the feel-good news stories are everywhere. And while I think that there is more awareness of autism than there has ever been, I still think we are so far behind when it comes to an actual understanding of the autism diagnosis itself.
Based on my experience as an autism sibling, 18 years of parenting and coaching over 100 moms of kids with autism, I think we are in the Dark Ages when it comes to an actual understanding of autism. In this episode, I am going to touch on where we are and why this matters to you. Stay tuned. Hi, I’m Lisa Candara, mother to an 18-year-old son with autism and founder of The Autism Mom Coach.
After my son’s diagnosis at age two, I poured all of my time, energy, and resources into helping him while completely ignoring the intense anxiety I was constantly feeling. While white-knuckling it got me through the first several years, it completely fell apart when my son hit puberty and aggression and self-harm became part of our daily lives.
I needed to figure out how to stay calm while he was constantly dysregulated. But how? No one had the answer, so answering this question became my mission. I have spent years learning what actually works, not from textbooks or therapists who have never lived this life, but from trial and error in my own life.
From all of that, I have created tools and strategies that have helped me stop escalating meltdowns, make impossible decisions, and parent for the long game. I’ve now coached over 100 moms through the same struggle. In this podcast, I share everything I’ve learned and what I am still learning with you.
Let’s get started. Hello, everyone, and welcome to the podcast. I am so glad you’re here, and I hope you’re doing well. Before I get into today’s topic, I have some things to share For the last several months, maybe even years at this point, I have been working on the 2.0 version of my coaching business.
After six years and over 100 clients, I wanted to stop and think about the where to from here. As some of you know, I started out almost exclusively as a meltdown coach, but my practice has grown so much since then, and I wanted my branding and my messaging and my offers to reflect this. I will get into this much deeper in upcoming episodes, but for now, I invite you to visit my new website.
You can learn more about the renewed direction of my coaching practice and how I can support you. I say renewed because I am still coaching on meltdowns all of the time, but the work that we do when you work with me one-on-one or within my membership goes far beyond how to handle the four alarm fires.
The work we do impacts how you show up in your life every day, how you make decisions, how you Learn to ride the wave of all of the complex and evolving challenges that we face as autism moms. More on this in upcoming episodes. For now, I just wanted to put that out there because my website recently went live, and I’m really excited to share it with you.
All right. So let’s talk about autism awareness and why I think we are in the dark ages when it comes to an actual understanding of autism. Number one, no one knows. Like many other neurological conditions such as ALS, Alzheimer’s, and multiple sclerosis, we do not know exactly what causes autism. Research suggests that there are a combination of factors.
We know it affects every person differently. I got an up close and personal view of this when my son was really young because I would host sleepovers with two other autistic boys in his class. All three were verbal, and that is where the similarities ended. I see the same things with my clients with siblings and even with twins with autism.
They have completely different profiles. They show up differently. Autism impacts different people differently, and we do not know why. And when you add in everything else that often comes along with it, anxiety, sensory processing disorders, ADHD, OCD, it gets really complicated really fast That’s why I disagree with the view of autism as a spectrum.
A spectrum suggests variations and degrees, but my actual experience of autism is more like a soup, a mixture of different things we kind of sort of understand in isolation, but when they mix, how they mix, what other ingredients are also involved, it changes everything. So not surprisingly, a treatment that helps one person may not work for another.
That’s why it’s so easy to get jammed up, especially online in different communities where people are trying different things and you start to get the idea that if it works for them, it should work for me, and why did it work for them and not work for me? And there’s a lot of second-guessing and self-blame.
The fact is, is your child is very unique, and what is going to help them in combination with all the other factors that make up who they are is going to be different from some stranger on the internet. And the fact is, the experts don’t even agree I’ve had several experiences with experts in the same field disagreeing between and among one another, and experts in adjacent fields having very different ideas as well.
It is so confusing to be in the middle of this. So let me just give you a couple of examples. When my son was 13 years old and he was having a lot of meltdowns, his autism doctor suggested ABA therapy. He suggested it very strongly, telling me that it is the gold standard. Now, of course, I wasn’t new to autism.
I knew what ABA was. My son had even done it at a certain point in his life, and it was very helpful, but that’s not where he was at 13 years old. Yes, he has an autism diagnosis, but there were a lot of other things that were happening. However, ABA was not just the gold standard, it was what was available at the time immediately, and with the strong suggestion from the doctor, I did feel some pressure to do it just to say some, in some ways that I had done it, that I’ve done everything that you’ve asked.
And I was hopeful that it would have a positive impact, but it did not. The ABA therapists were stumped, essentially. I had several different ABA therapists from the same company at my home at different times, and it got to the point where I actually had, like, the head guy there to evaluate what was happening, and he bluntly said to me, “This is not what we do.
This is severe OCD.” Like, basically, we can’t help you. In some ways, that was super validating and also crushing and frustrating because I wanted something that was going to help my son, and this wasn’t it, even though he has autism. Another area that the experts do not agree on is medication. If you’ve ever experimented with medication with your kiddo, you’ve experienced this firsthand.
I’ve had the experience, and so have several of my clients, where the child presents as, you know, very anxious, some OCD behaviors, and they are prescribed an SSRI By doctors who do not know or appreciate the impact that an SSRI can have on a kid with autism. And unfortunately, I learned this, and so have several of my clients, the hard way because our children reacted very badly to the SSRIs.
And when, for me, when I finally got in front of an autism doctor, the first thing he said to me was, “Oh, I would never give an SSRI to a kid with autism without having another medication on board.” And I don’t want to get into the details of that because this is not a medical advice piece, but the point is that I went to one doctor who I thought had enough experience with autism who said one thing, and the other doctor that was like, “Oh my God, no, never.”
And the experts don’t agree. They don’t know. They don’t understand. And I’m not saying this as a slight on anyone. I’m just saying that this is where we are in our understanding collectively of the autism diagnosis. And not just the autism diagnosis, the interplay of the autism diagnosis with other diagnoses, and I’m just going to throw out OCD because it’s my personal experience.
I had my son going to an autism hospital where they were prescribing certain medication, and then when he was finally admitted to a partial hospitalization for OCD, they wanted to go a very different way. And as a parent being in the middle of this, it is really confusing, it’s really frustrating, and in some ways, for me, it was validating as well.
Validating in a way I didn’t want to be validated. I really just wanted to go to a doctor and be like, “Hey, this is the issue. Help me out,” and they would do the thing, and then everything would be okay. That wasn’t the case, and the more I dealt with different doctors around the country, the more I saw, oh, they’re just not in a place right now where they know.
And in fact, the best doctors that I’ve been to have actually said that. “We don’t know. This is what we think. This is what we’re going to try, and then we’re going to see,” which as a parent is crushing. Nobody wants to experiment with their children, but that’s where we are, it seems right now because we just don’t know.
We’re just not there. This brings me to the second thing I want you to know, and that is your judgment is so important. And I want to be clear here. I don’t want you to hear what I just said and think, “Great, nobody knows anything, including me.” That is not what I mean at all. What I mean is in a world where the experts do not always agree, where our science, our research, our understanding about autism is far from where we would love for it to be, it becomes even more important for you as the parent to trust what you are seeing and what you are experiencing.
You are the closest one to your child. You are the only one seeing the full picture. You see what happens before school, after school, after therapy, after a medication change, all of it. You see your child in a way that nobody else does, and over a much longer period of time. That is why it is so important for you to trust yourself.
I know that that’s hard. We’re always being gaslit. I know what it’s like to raise a concern and have someone minimize it. I know what it’s like to hear, “He’s fine here,” while you are living a completely different reality at home. And I know what it’s like to leave appointments feeling more confused than when you walked in.
A lot of us, most of us know that feeling, so of course we start to question ourselves. You start to wonder whether you are overreacting, whether you are missing something, whether someone else must know better because they have a degree, a title, or years of experience. And while all of that can be important and relevant to a degree, it is not as critical as your proximity to your child, your observations, pattern recognitions, your read on what is helping and what is not This is information that you will collect over time, and it is so important to that Full understanding of your child, of their development, and your ability to work with your child’s team to troubleshoot, to come up with different ideas.
That is not something that you can get anywhere else but from you and your time on the job, your 10,000 hours. Now, when I say trusting yourself, I want to be really clear. This is not a backhanded way for you to find fault with yourself over past decisions and to judge yourself or your decisions based on 20/20 hindsight.
That is not what I’m talking about at all. Trusting yourself means having the courage to be willing to say, “This is not adding up. This is not helping,” or, “There is more going on here.” This is like a muscle that you build. I’ve seen this over and over again in my coaching work. In the last six years, I have worked with several moms whose kids did not get an autism diagnosis until middle school or early high school.
Every one of those moms suspected autism much earlier. They raised it. They asked for… Every one of them raised it. They asked for… They raised it. They researched it. They asked about it. Some of them even had their child tested for it, and every one of them was dismissed again and again. Their kids, though, were diagnosed with the kitchen sink, everything but autism, from sensory processing disorder and anxiety to ADHD and OCD, all the things that sit under the autism umbrella, but never autism.
That does not mean those professionals were bad people. It means that autism can still be missed, especially when it doesn’t match the narrow picture many people still have in their heads, and it means that these mothers were seeing something real. Another example I have of this is a mom whose child was having a lot of severe meltdowns really out of nowhere.
The child was 15 years old and began having meltdowns, and the mother was pretty perplexed by it. The doctors she went to, not surprisingly, were focused on the fact that he was autistic and this was puberty and were recommending medications like antipsychotics and SSRIs. However, my client just… She wasn’t really resonating with this recommendation at all She had noticed a pattern that the meltdowns were happening when her child also felt physically ill, and these observations eventually led to a PANS/PANDAS diagnosis and a completely different course of action.
The point here is that a mother’s lived experience with her child matters. Does everything that we think or suspect or fear is possibly true or happening? No. What– At one point, I was almost hoping my kid had PANS or PANDAS to understand this uptick in OCD, and that was not the case. We’re not always going to be right.
However, our voice in the conversation matters because when the field itself does not have any clear answers, our lived knowledge of our kids becomes even more important. And third, the final thing that every autism mom needs to know in twenty twenty-six is that you need support too. Being the person carrying this level of responsibility is tremendous, but there is little to no support in the system for the parent keeping this together on a day-to-day basis.
You are coordinating the therapies, you are advocating at the IEP meetings, handling the meltdowns, the calls from schools, making really hard decisions, and there is almost nothing out there designed to support you in doing that, implementing all of that on a day-to-day basis. And that’s a huge gap, and it’s one that needs to be filled with something more than air, something more than platitudes like pouring from empty cups, an oxygen mask, or being told that you are a super mom, a superhero, or other people remarking on how they don’t know how you do it, or that special needs kids are made for special parents and all of that.
You need support. You are the engine for this entire operation of raising and supporting your child with a complex diagnosis that is not very well understood I never really thought much about this because I was so super focused on my son. But when he hit his teen years and things got really difficult and the stakes were even higher because of aggression, I learned really quickly that there was not much support out there for me in figuring out how do you parent day to day when you are walking on eggshells all the time, when your child is completely dysregulated.
And that is the gap that I am trying to fill with my coaching program and the support that I provide because I understand what it’s like to look for support and to not find it or to be offered support that doesn’t actually speak to your day-to-day reality as an autism mom. I will get into that much deeper in future episodes, but for now, I want you to know you need support and you don’t need a permission slip to get it for yourself.
It is the most important thing that you can do for your child and your family because you are their greatest resource. All right, everyone. That is it for today’s episode. I will talk to you next week. In the meantime, go check out theautismomcoach.com. Talk to you next week. Thanks for listening to The Autism Mom Coach.
If you are ready to apply the principles you are learning in these episodes to your life, it is time to schedule a consultation call with me. Podcasts are great, but the ahas are fleeting. Real change comes from application and implementation, and this is exactly what we do in my one-on-one coaching program.
To schedule your consultation, go to my website, theautismomcoach.com, work with me, and take the first step to taking better care of yourself so that you can show up as the parent you want to be for your child with autism
