Meltdowns aren't a discipline problem—they're a nervous system response. If family members don't understand your child's autism diagnosis, don't cut them off yet. Learn how to bridge the gap gracefully in our latest episode.

Show Notes:

When a grandparent truly believes in an autistic child, their entire life becomes unstoppable.

Has a grandparent ever looked at your autistic child and just… not gotten it? Today, we’re talking about why that happens AND what the research says we can do about it.

Yale-trained scientist and autism educator Dr. Theresa Lyons of Navigating Autism joins Tonya to unpack the complex relationship between grandparents and autistic grandchildren — including what a 2023 caregiver training study revealed, why grandparents grieve too, and how a grandparent who truly “gets it” can become the most powerful person in your child’s life.

In this episode, we cover:

• ✅ Why grandparents struggle to understand an autism diagnosis (it’s not what you think)
• ✅ What research of nearly 2,000 grandparents revealed about wanting to connect — but not knowing how
• ✅ How involved grandmothers help diagnose autism up to 5 MONTHS sooner
• ✅ How to have the hard conversation without it blowing up
• ✅ Why grief is a normal grandparent response — and how to work with it, not against it
• ✅ The one thing a grandparent can say that changes everything

“When you have someone who believes in you, life just becomes unstoppable.” — Dr. Theresa Lyons

🔗 Connect with Dr. Lyons:

• Website: https://navigatingautism.com and https://awetism.net
• YouTube: https://www.youtube.com/@NavigatingAWEtism
• Instagram: https://www.instagram.com/navigating_awetism/
• Facebook: https://www.facebook.com/NavigatingAWEtism
• TikTok: https://www.tiktok.com/@navigatingawetism
• LinkedIn: https://www.linkedin.com/in/theresamlyonsphd/

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

📰 Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

👉 Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

• https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode 153: The Grandparent Gap: Autism, Family, and What the Research Actually Says

When a grandparent truly believes in an autistic child, their entire life becomes unstoppable.

(Recorded April 15, 2026)

Full Transcript of Episode 153:

Dr. Lyons: When you have someone who believes in you life just becomes unstoppable. And I think that’s what every grandparent wants their grandchild to have, that strong connection that, I believe in this child and I wanna see them grow and blossom.”

Tonya: Has a family member ever looked at your autistic child and just not gotten it? Maybe they thought the meltdowns were a discipline problem. Maybe they stopped coming around after the diagnosis. Maybe they said something that broke your heart, and you’ve been carrying that ever since. The grandparent relationship is one of the most complicated, most emotional, and most under-talked about dynamics in autism families, and today we’re gonna talk through some of the pain you might have experienced.

I’m Tonya Wollum, and this is “The Water Prairie Chronicles,” a podcast where we walk alongside parents of children with disabilities, bringing you honest conversations and practical guidance to help your family move forward with confidence.

My guest today is Dr. Theresa Lyons, a Yale-trained scientist, an autism educator, and someone who brings a perspective I’ve never had on this podcast before.

Dr. Lyons is the founder of Navigating Autism. She has worked with families in more than 21 countries, and she is also a mother to an autistic child. She knows this topic from the inside out, and today she’s sharing it with us.

We’re talking about how to help grandparents understand your autistic child, how to bridge the gap without losing the relationship, and what it means for a child when a grandparent truly shows up for them.

Dr. Lyons, welcome to Water Prairie.

Dr. Lyons: Thank you for having me. I’m excited to be here.

Tonya: In the parenting communities right now, parents share two very different experiences: grandparents who disappear or pull back after a diagnosis, and grandparents who show up through every meltdown and every milestone. From what you’re seeing with working with families across, we said more than, more than 21 countries, what’s the defining factor that you think separates a grandparent who struggles to connect from one who becomes a true ally for their family?

Dr. Lyons: A lot has to do with the already established communication between the grandparent and the adult child. So if it is strained, autism is just gonna put more strain on that. Um, so it’s really important to Be able to have conversations and to, to communicate from generation to generation. That’s really how you can have grandparents provide meaningful support to the family.

Tonya: Now, I, so I, I was an older parent when I had my children, which means my parents were older by the time my kids came. And, um, and I can remember my daughter’s diagnosis. Now, my daughter’s visually impaired and, um, and she has low vision, so she’s not blind in the traditional sense that a lot of people may imagine a, a blind child would be acting.

And we would go to my mom and dad’s house, and she would run through their house and not bump into anything. And I can remember my mom saying, “She can see just fine.” She, you know, like she, she didn’t get it that seeing has different levels. And for Emily, what she could see was a distorted version of what we saw, but because she’s near sighted, it would, like the objects would be larger than they really were, so she could easily navigate around the blurred edge of what she saw.

Um, and so we found a lot of it was, was a lack of education, not, not understanding what that diagnosis meant for my daughter. Do you think that plays a role in this as well with grandparents who don’t understand or because they came through a generation that would hide a diagnosis rather than making, than disclosing that to, to their, their neighbors or to their friends?

Dr. Lyons: So research in 2023 looked at grandparents, um, who were playing the grandparenting role, not stepping in as, as a parent. Uh, and they found that, um caregiver intervention and training was really beneficial for these grandparents. And I will say in general for parenting, research also shows that learning about autism and really getting your hands into different, um, interventions and, and really understanding the behavioral aspect makes a huge difference for parents and kids with autism.

So the same is true for grandparents. You can’t expect a grandparent to know what to do if the research shows we can’t even expect parents-

Tonya: Right …

Dr. Lyons: to automatically know how to do this, right?

Tonya: Right.

Dr. Lyons: So we, we definitely need to give grandparents some, some grace as, as to, you know, the majority of them are not gonna know what to do.

They’re not gonna know, um, how to handle meltdowns. Meltdowns can be very traumatic for, for everyone. So for the child that is having it and for, for anyone around that is even watching it. Grandparents sometimes say that the, the trauma is seeing their grandchild behave like that, seeing their adult child not really be able to, to help, and it’s traumatic as a grandparent to just have to stand there and watch and feel helpless and then not even know where to turn to.

So, so there’s definitely a lot of trauma that can be experienced, so the more education and the more really hands-on intervention training that a, a grandparent can get really helps with understanding the situation and then supporting your adult child, um, much easier.

Tonya: Yeah. And I, and I can see that because I, I, I know from the parenting side of things, when our children are young We, we go into it thinking, you know, of course everyone thinks, “I’m gonna have the perfect child.”

So- Yes. It’s the, “Why would I not?”

Dr. Lyons: I’m a parent.

Tonya: There’s not gonna be any problems.

Dr. Lyons: That’s right … until they’re like teenagers.

Tonya: I’m the perfect parent.

Dr. Lyons: I know it all. It’s- I can figure it out.

Tonya: Right. Yeah.

Dr. Lyons: Like parenting, come on. I, I watched my parents do it. It was easy. Yeah. Except when I didn’t like what they did, and I’m just not gonna do that.

Tonya: I’m not gonna do that.

Dr. Lyons: Exactly. So I know

Tonya: what to do. And, and I don’t, I don’t know about you, but when my kids would have those, those meltdowns, it must be a discipline issue, you know? So, so I have to lay the line out that this is what w- you know, we, we don’t do this. Um, we went through parenting programs to, to learn how to, to, to parent the strong-willed child.

Um, we went through that. Um, and, and we kinda came on it the, the best way to, to help our children through stumbling a lot along the way. And so, so helping a grandparent understand that journey is that next level, like you’re saying, ’cause if, if, if we’re struggling, then-

Dr. Lyons: I don’t think anyone naturally knows how to handle an autism meltdown, parent, grandparent.

I, I just don’t think that’s in our, like, DNA to, to really be able to understand that, um, a- a- and understand when the nervous system just gets overwhelmed and overstimulated. Uh, and even tuning into someone’s nervous system like that, right? As, as a parent, we start to, to tune into, okay, when are their triggers?

Oh, we’re starting to notice their nervous system. These are all things that most parents don’t ever develop that skill of, okay, I’m really tuned into, um, how overwhelmed my child is. So there’s a lot about autism and meltdowns and, and just so much that When you get educated on it, it makes sense and you can see things and you’re like, “Oh, okay.”

But without that education piece, I think it’s really, really difficult.

Tonya: How do you recommend that parents and grandparents start that education process?

Dr. Lyons: So a lot of times it depends on what’s going on locally. Um, uh, there are some grandparents that prefer to learn in person, some parents as well, so it’s really knowing that about yourself.

Do I need something in person? Do I need something virtually? Um, you have a lot more options when, when you’re open to, to learning from things virtually, but there are, there are great coaches out there. Um, different large hospital systems run a lot of these education programs, and that’s where you can start.

Um, it– You’re likely not going to get all the information you need in one sitting and from one place because that has a certain perspective. Um, so you, you’ve just gotta start somewhere. Uh, so start where you feel comfortable learning and, um, then just know that you’re, you’re gonna wanna keep learning for sure.

Tonya: Our grandparents may have a lot of confusion because they didn’t grow up with these terms that we’re talking about a lot easier now, like neurodiverse, um, neurotypical. Those are words that our, our grandparent group would not have heard until recent years ’cause no one was using those words until more recent years.

Dr. Lyons: That’s very recent. Neurodivergent and neurotypical is within probably four years or so, ’cause even when my daughter was diagnosed with autism, um, neurodiverse and neurotypical was not anything that was, that was discussed back then. Um, and it’s only been 13 years. Right. So it’s not- Right … that long really.

Tonya: And that’s part of, um- Of more than just autism too. And so you have this whole

Dr. Lyons: Yeah, neurodiverse is more than autism.

Tonya: Yeah. So, so it, it can get in, in, in intermixed, um, with this too.

Dr. Lyons: Definitely.

Tonya: With all of this new stuff coming in, with watching their children struggling, ’cause, you know, once a parent, we’re always a parent.

So, so if, if, if our children are struggling, we’re struggling too. There’s some grief that comes with that. There may be some denial that’s coming with not accepting the diagnosis that’s there. How can we help these grandparents process the grief and the confusion that they might be feeling?

Dr. Lyons: Everyone processes things a little differently, but support and community and, um, having other grandparents who also have kids with autism definitely is helpful, um, so that you can talk through these things.

Um, in 2017, there was a large study done of almost 2,000 grandparents, uh, and it identified themes of, of grandparents wanting to have that connection with an autistic child, and just struggling, “How do I connect with my chi- my grandchild with autism?” So it’s important for grandparents to know that they’re not the only one who struggles with that, right?

So understanding different, um, statistics like this is, is really important because it, it can feel very hard. It can be like, “This is not the grandparenting experience I want,” right? Maybe you walk in the house and the child, you know, runs away, or the child goes and sits in the corner, and every time you try and go towards them, “Here, let’s read a book.

Let’s do this. Let’s do this,” and, and the child then starts getting even more and more upset. Um, so it, it– there’s certain– like nobody ever thinks that that’s gonna be their grandparenting experience. So then it, it becomes this shock of, of what am I doing wrong? What is going on? So again, it’s that education piece is really, really important so that grandparents don’t take it so personally, and then they can s- learn how do I have conversations with my adult child about how to interact with my grandchild?

Because that might be something that they really, really want. Um, and it’s important to have these conversations, but these are not easy conversations to have, and I don’t think anyone is very good at them without a little planning and maybe practicing, a little, you know, role-playing in their head, you know, that kind of thing.

Um, so I think it’s really important for grandparents to, to understand that it, it’s natural and it’s okay to feel some grief of, “This isn’t what I was expecting and, and I still wanna connect with my grandchild.” And, you know, there’s maybe a lot of things that that grandparent wants to teach that child, right?

And all of that needs to be taken into account. Um, so the, the need for information for grandparents is definitely high so that they get the education and understanding about what autism is, and so then they could create more beneficial interactions.

Tonya: So let’s move to the parents listening, ’cause more than likely that’s who’s hearing us and they’ll be passing this on to, to the grandparents.

So for those parents that are listening right now who are actively navigating a painful divide, maybe the grandparents have minimized the diagnosis, they’ve refused to follow sensory accommodations at their home, or they simply don’t believe this is a real diagnosis. What are the first steps that this parent can take to start building that bridge without hurting the relationship?

‘Cause walking away from your parents is not the answer, but there’s ways that we can help bring them in gently. Do you have any recommendations for those parents?

Dr. Lyons: Well, so I’m gonna back it up just a little bit, ’cause one thing I’ve noticed is sometimes where the tension comes from is before the diagnosis So there are times when grandparents point things out about grandkids and the adult children might not want to hear it.

Uh, and, and this is something grandparents struggle with in the sense of, do I mention that I have some concerns about speech or behavior or things like that? So sometimes this situation is actually the, the, the root, right? You, you have all these emotions that, that stem from maybe a, a grandparent saying something.

Um, and there is research showing that grandparents, both the grandmother and the grandfather, do notice things earlier. And when they discuss those concerns, an autism diagnosis is made earlier But again, these are difficult conversations to have, right? So a, a grandmother that is frequently involved with their grandchild, the autism diagnosis is made five months sooner, and for a grandfather, it’s four months sooner.

So these– grandparents have, have big impact, um, but those kind of conversations you can imagine are not easy, and you could imagine how many do not go well.

Tonya: Yeah. Uh, well, I was gonna ask, how, how can a grandparent start that conversation and be heard? Because you don’t wanna come across as judgmental or…

And, and I can see the parent now feeling like, they’re being told they’re doing something wrong.

Dr. Lyons: Exact right, and then that triggers that parent- Right. … you know, for the whole parent-child relationship.

Tonya: So now the relationship’s gone, you know?

Dr. Lyons: Yes. Yes, yes, yes. So a lot of times, um, I mean, there’s, there’s so many different ways to, to handle this.

Um- I have found, and I have helped families kind of dig themself out of that, that hole of anger and everything, um, to sometimes have these kinds of conversations in email and where people can really think about their thoughts. We now have all k- types of AI, and we can plug it into AI and be like, “Make sure I’m not offending anyone.”

“Does this sound rude?” You know, like we, we can make sure we at least start the conversation in, in the way that we want. Um, so actually I was working with, um, a, a mom who, um, the in-laws had mentioned a few things and the mom just really got upset because this was the, her first time being a mom and she really wanted to do a good job.

And it felt, it wasn’t, but it felt to her like she was failing and then her in-laws were thinking she’s a bad mom. And so it, it cascaded down in, in a very negative way and the mother-in-law actually stopped the conversation and was like, “This is not, this is not what we want to happen,” right? So, so, uh, both sides can see like, oh, these words are just getting in the way of, of everything.

So for that family, what– ’cause then the next time they were visiting, the grandfather couldn’t help himself and he said an observation again, and then the mom got really upset and doesn’t wanna visit, and then, you know, the father’s in this awkward position. So, um, what, what was done was, um, the grandfather wrote an email, um, and it was in response to the mom.

So the mom was the one who was getting really upset. Um, but she honestly had certain concerns of her own, and that’s why her emotion was getting– you know, she had that concern herself. So it was just her being like, “Okay, I, I wanna know what you see.” And email was the only way she could, she could handle it, and she couldn’t read the email reply for a while, and the mother-in-law made sure the, the grandfather-in-law was, you know, his words were good, right?

So like everybody knew this is an emotionally charged situation. But the thing is, everybody had love for the grandchild, and that’s the important thing to remember. So words are gonna come out the wrong way. They’re, they’re gonna s- you’re gonna say things probably that you don’t think are harmful or insulting, but y- on the other side it is.

So it’s just important for everyone to say, “All right, we do not mean this in any negative way whatsoever.” So sometimes you have to get out in front. So a grandfather could or grandmother could say, “Listen, parenting is very different nowadays, and you are dealing with things that we did not have to deal with at all.

And I understand how hard it is to be working and to have kids and, you know, relationships and, and, and all of this. So we only ever want to make your life easier.” And I like– And you could just say, “I just want you to remember that piece throughout all of this. Just remember that.” Right? And it seems kind of silly.

Why do I have to say that? You know, like, that’s my child. They’ve, I’ve known them all their lives. They know I love them. But you’re dealing with such an emotional situation that sometimes it, it’s better to just, you know, put that out there so that you can always circle back to that. Um, because most grandparents love their grandchildren, most parents love their children, most parents want their grandchild- their grandparents involved and everything.

So it’s, it’s really just how do we make sure that the communication piece in all of this doesn’t trigger anyone, and, and how do we build that multi-generational support and interaction? It really takes conscious effort. It doesn’t– For most people, it doesn’t just kind of flow. Um, for most people, it can become very burdensome and stressful, and nobody wants that.

So, um, it, it really just takes a lot of thought, I would say.

Tonya: Well, and listeners, to bring back the story of my daughter and my mom questioning, you know, what, why, why we were making su- such a big deal about her not being able to see. My mom came around and started learning more and, um, and would take books that she would buy for her and take a black pen outline and outline the pictures.

Once she understood what was needed, then she was part of the solution and a support for me and, and for, and to this day is her strongest advocate for anything. So, so it, it is worth the investment of time to help- Yeah … both generations understand. And grandparents, if you lead with love, that’s, that’s what this- Yeah

is all about. You know, you, you, you do love- It is … your child, but our words can be so harsh at times that we don’t, we don’t mean them to be, but they can.

Dr. Lyons: And we don’t. Yep …

Tonya: and, and when- Nope … when your daughter or your son are on that raw emotion of dealing with this toddler or this, this preschooler who is just having meltdowns and they don’t know why yet, and they, you know, they’re, they’re, they’re living in trauma all, all the time.

Um, it’s hard to receive anything that’s not positive at that point. And, and that suggestion Yeah.

Dr. Lyons: Doesn’t… ‘Cause it, like you’re saying, the, the parent, you’ve gotta put yourself in the perspective of the adult child, the parent, and they might not be sleeping, right? Their, their child might not be sleeping.

There might be battles with eating and with getting dressed and with school. School might call every day, twice a day, three times a day. You might not be able to really, uh, focus on work, and then maybe you’re feeling stressed, like, “Oh, you know, I don’t, I don’t wanna get fired.” You know, so the, the adult child is in such a different state that…

A- and the adult child might be presenting like, “Yeah, I got this. Everything is good,” right? But underneath they’re like, “Oh my gosh.” Right? So, so this, this is where, uh, like leading with compassion, even if it seems like it’s unnecessary, but also not being like condescending, but, but that genuine compassion- Yeah

um, is, is really the place to start.

Tonya: I wanna pose this question ’cause I think, I think it’s one that if we can finish with this thought, it’s gonna help everyone listening. What do you believe an autistic child truly gains when they have a grandparent who deeply gets them, and what’s at risk when they don’t?

Dr. Lyons: Oh. When you have someone who believes in you life just becomes unstoppable. And I think that’s what every grandparent wants their grandchild to have, like that, that strong connection that, “I, I believe in this child and I wanna see them grow and blossom,” and always to have a, a safe space. I mean, if you could imagine asking a child, “When do you feel safe?”

Mm. “When I see Grandpa. When Grandma bakes me cookies.” Right? That’s, that’s what life is, is all about, so having that unconditional support, that safe space just means everything to a, a grandchild.

Tonya: Well, and, and I, I like the term safe space ’cause that defines it so well. Um, it’s not safe from being shot at.

It’s an emotionally safe space, and it’s so important that our kids find that, that place. But yeah, what, what grandparent doesn’t wanna be the one who, who is that for them? You

Dr. Lyons: know? Exactly. I mean, that, that is what, what grandparenting is. You’re there for, for, uh, just so that that grandchild feels love, like, and feels it, not just knows, right?

With the parent and child, many times we always feel like we know our parent loves us. Like, we know it. We might not say, “I feel love,” or like, “My mom or my dad is my safe space,” but a grandparent could have that. And just education, understanding what autism is, and taking the time to have those conversations with the adult child, it, it really can make a, a huge difference in everyone’s lives.

Tonya: As a scientist, as a mother, as someone who’s walked this path herself, I appreciate you being here today. This conversation is gonna mean something to a lot of our families, and I’m sure that our listeners are gonna wanna connect with you. Where can they find you?

Dr. Lyons: Sure. You can find me at navigatingautism.com, and I do spell autism differently.

I spell it A-W-E-T-I-S-M. And you can also find me on YouTube. I’ve had a channel for over 10 years. Um, so you– pretty much any research you do on YouTube about autism, you’re gonna run into a video of mine or two. So certainly check me out there and leave comments. I, I write back to the comments, so that’s, that’s definitely a place to, to get started.

Tonya: So we’ll, we’ll put those links in the show notes, um, and, and your other social media as well, ’cause you’re on Instagram and Facebook and all too, right?

Okay. So here are three things that I want you to carry from today. First, grandparents are on their own journey too. They didn’t grow up in a world that understood neurodiversity, and their confusion or resistance isn’t always rejection.

It’s often fear or grief or simply not knowing what to do. That doesn’t make hurtful words okay, but understanding the why gives you somewhere to start. Second, you’re not responsible for educating everyone in your family by yourself. Dr. Lyons gave us a real practical language for beginning the bridge-building conversation.

Use it, start small, one conversation at a time. And third, the stakes for your autistic child are real. A grandparent who truly gets them is not a nice-to-have. It’s a relationship that can shape who they are and who they believe they are. That’s worth the hard conversation. If you want to go deeper with Dr.Lyons’ work, make sure that you check out the show notes for her links.

We’ll put that in the description for you. And if today’s conversation has you thinking about your child’s school supports, I’m here for you. Reach out anytime. Share this episode with a grandparent who needs to hear it or a parent who needs to hear it, and subscribe so you don’t miss what’s coming next.

And take good care of yourself and your family, and I’ll see you next time.

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Frequently Asked Questions (FAQ):

Q1. Why do grandparents sometimes pull back or seem distant after an autism diagnosis?
A1. It is rarely direct rejection; more often, it stems from deep-seated fear, grief, generational differences, or feeling completely helpless during traumatic meltdowns.

Q2. How does grandparent education impact an autistic child’s development?
A2. Research shows that when grandparents receive targeted caregiver training and intervention education, it lowers their stress and allows them to create highly beneficial, meaningful interactions with the child.

Q3. What should I do if a family member insists my child’s meltdown is just a discipline problem?
A3. Lead with education regarding the nervous system. Help them understand that a meltdown is a state of being biologically overwhelmed, not a behavioral choice or strong-willed defiance.

Q4. How can we discuss sensitive developmental concerns without triggering family arguments?
A4. Moving highly emotional conversations to structured formats like email can give everyone time to think, process, and edit their words for compassion rather than reacting defensively in the moment.

Q5. Does having involved grandparents actually speed up the autism diagnosis process?
A5. Yes. Research highlights that grandmothers who are frequently involved help notice developmental variances earlier, leading to a diagnosis an average of 5 months sooner, while grandfathers accelerate it by 4 months.

Q6. What is the ultimate benefit for a neurodivergent child who has an affirming grandparent?
A6. They gain an emotionally safe space and unconditional validation. As Dr. Lyons notes, when a child has someone who truly believes in them, their potential becomes unstoppable.