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Autism Beyond the Diagnosis: Co-Occurring Conditions and Whole-Child Care | Denise Fulton

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Many children with autism experience challenges that go beyond the diagnosis itself, yet co-occurring conditions are often overlooked.

In this episode of BrainPower with Dr. Eko, Dr. Eko is joined by Denise Fulton, Chief Operating Officer at the Autism Research Institute, for an important discussion on autism, whole-child care, and why identifying co-occurring conditions can significantly impact long-term outcomes.

Together they discuss:

• Common co-occurring conditions in autism
• Why behaviors can sometimes signal underlying medical concerns
• The importance of a multidisciplinary approach
• A personal family journey and lessons learned
• Supporting children beyond diagnosis and into adulthood

Whether you are a parent, caregiver, therapist, educator, or healthcare professional, this episode provides practical insights into understanding the whole child and supporting meaningful progress.

Listen to the full episode on your favorite podcast platform and check out the video version on our YouTube channel!

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Welcome And Guest Introduction

SPEAKER_01

And we're live. So hello everybody, and welcome to another episode of Brain Power with Dr. Echo. I have an amazing guest with me today. She's the CEO of Autism Research Institute, Dennis Fulton. Welcome to the show, Ms. Fulton.

SPEAKER_00

Hi there. Glad to be here.

SPEAKER_01

Yes. So I'm gonna have her introduce herself because she has she's simply amazing. And she's done so much work in the field of autism research and just helping our parents and our children, right, leave better lives. And even beyond that, she's mommy of grant, but I'll let her tell you all about it. So tell our listeners about you, Denise.

SPEAKER_00

All right, thanks, Dr. Echo. I'm Denise Fulton. I am the COO of the Autism Research Institute. I've been working there for about 20 years, which is amazing to me. I had a job, I worked in technology, and when my son was diagnosed in 2003, I stopped doing all of those things and really threw myself into helping

Denise’s Path Into Autism Work

SPEAKER_00

our son grant. And so, as part of that journey, I ended up connecting with Steve Edelson and the great leaders at Autism Research Institute and ended up being hired and working here. I originally worked on the conferences with some really amazing people. And then as time went on, everything moved online. And so I've been working on ARI's continuing education and webinar programs for many years. I also helped with ARI's think tanks and I help support all of the different programs that they do online, along with the great people who I work with, like Dr. Edelson and our team. And I'm really fortunate to do this work to honor other families and to walk with them as I walk with my own son.

SPEAKER_01

Wonderful. Isn't that isn't that amazing how life just puts things in your path, right?

SPEAKER_00

Yeah, yeah. I definitely was when I was in school, this was not where I imagined I'd be, but I'm really grateful to be here.

SPEAKER_01

Yeah, it's wonderful. So tell us. So you mentioned your son Grant. So there are parents listening who who feel who may there may be different parts of their journey, right? Some of them are still not sure if they should pursue uh an evaluation, some have gotten evaluated. Can you just tell us what the journey was like for you? And I know every child is different, but would like to hear how that was for you.

SPEAKER_00

Sure. Um, Grant was one of the kids who, from a very young age, had clear medical issues. He had gastrointestinal issues that were quite significant that

Early Red Flags And Medical Clues

SPEAKER_00

that could not be ignored. And he had rashes all over his body. He had mystery fevers. I mean, he was nine to eighteen months old and just really sick all the time. He wasn't speaking, uh, he was very perseverative, um, would walk back and forth by bike racks once he started walking and just sort of I, you know, stim on those, just that sort of thing. Just no two-way communication. And so we knew by a year that that things were were developing differently. And by 18 months, he was already referred for an early intervention and has started. But we knew that there were medical issues. He was having these issues, he could not sleep. And so we went to different physicians and they were very kind, but most of them really didn't see it as they just said a lot of autistic kids are like that. So we started doing our own research, as many families do, and especially in that time, did, and realized that there were probably things that could be done with appropriate medical care. And so we did travel. We traveled over state lines, we traveled up through time zones. Um, I don't want to make it sound like we had a ton of resources, but we just managed to do that, usually by car. And uh we did find a physician who was very knowledgeable about nutrition and um different co-occurring conditions. And once Grant received proper evaluation and started on a better nutritional plan and was really getting the care that he needed, he improved a lot. He improved quite a bit. Grant is 23, he's 24, 24 this year. And he did, he graduated from college last year. He got his degree, and that was very different from his initial prognosis. I mean, we had him diagnosed every year at the university here where we live, and it's very conclusive that he had a full syndrome diagnosis of autism at that time. That's that's how they diagnosed it, and that he has made unusual progress. Um, and and just really fortunate that we found the right people and that he was one of those people who could improve, who had that those conditions that once addressed his development was able to continue.

SPEAKER_01

Wow, thank you so much for sharing that. And I'd like to go a little deeper into the core core in conditions, right? Because I'm sure their parents listen and think, wait a second, my kid has lots of rashes too. And are you saying that this has something to do with nutrition? I mean, I say it all the time, but I like you to say it's something, it's something it's different coming from a parent, right? And just sharing like what you found in your journey and even working with um ARI. I'm sure you've come across lots of families and and seen all the research come to life. So just walk us through a little bit more detail about how the conditions and and and

Finding Help Beyond Dismissal

SPEAKER_01

the outcomes. Yeah.

SPEAKER_00

Sure. So Grant clearly had significant, he had diarrhea six to eight times a day. He had fevers for no reason, they would just come out of nowhere. He'd have a fever, and there didn't seem to be a reason for it. He ended up having, he couldn't, he, his skin was so inflamed he couldn't sit in the bathtub. So he had to stand in the tub, and then he ended up having infections in his genitals and different things because they just he just was so uncomfortable and he couldn't sleep. And I mean, we just were exhausted as parents. And I read a book, it was a book at that time that everybody was reading about using a gluten-free, casein-free diet. That was the at that time, sort of the the cutting edge. And, you know, I read it and I said, well, there's nothing wrong. He's just gonna eat whole foods. We're gonna feed him whole foods. And so we cleaned out the cupboards. You know, we'd been these totally organic older parents already, so it wasn't that big a deal to us to change his nutrition. And so, yeah, he started eating whole foods. He was eating real food, you know, meat, fruits, and vegetables. We did cut out gluten, we cut out dairy. Uh, we were juicing with tea. So we were using mint tea with some juice, you know, kind of watered down and using that because he would drink that. He didn't like to drink water, but we could get him to drink that. And he was almost two when we started the diet, and he had not been communicating at all. And he did start speaking within about four to five weeks. I mean, by his his second birthday, he did say a couple of words. Now, I don't want to make it sound like he was speaking in sentences or, you know, giving speeches, but it was the first time he had done that. And so we were using sign language with him, and as he started to, you know, the rashes went away, the diarrhea went away, started to sleep, then we started to see him being able to communicate. We started

Nutrition Changes And First Words

SPEAKER_00

to see that. And it this was a long process. This is six to nine months. So this was just over the course of the next year. A lot of that communication at that time was very perseverative and redundant, but we were just happy to be closing some circles of communication, getting them to interact and uh getting some kind of basis to work with for all of his therapy and and different interventions we were doing through the school district and and different resources. But the key thing for Grant was very much nutrition for him. And I would never say that's true for every family. I can't say that's true for every family as a parent, but I can say that for a child who was that sick, it made a very big difference. And he couldn't tell us he felt sick, but now as an adult, he remembers feeling sick. He can articulate about feeling that way, about being nauseous until he was four, you know, feeling feeling sick to himself his stomach. So I think I think you know, sometimes we have to be detectives and try to help our kids just based on what we can see.

SPEAKER_01

Yes, absolutely. You've said so many things. One big one I want to point out is that it took time, right? And I always have this conversation with my parents, it takes time, right? There is no magic bullet, it's gonna take time to reverse itself. And and did this happen to Grant? Did you ever notice a time where it seemed like he was regressing and then came back and then moved forward? Did that ever happen with him?

SPEAKER_00

He it was three steps forward, two steps back, three steps forward, two steps back. Uh, I will say he was on special diets until he was 11. I mean, it it went on, and he still is pretty careful about how he eats. Um, but he was first he did that gluten-free, casein-free diet, and he did start to make that progress with pragmatic communication, but he still had some of those symptoms like gastrointestinal problems. And we worked with clinicians. I want to make this really clear. We worked with licensed medical professionals to proceed through this. We did not try to do it by ourselves. Sometimes insurance limited, who what our choices were, but we did everything we could. Like we did our best and then did our own research as well and tried to educate our nutritionists and other people if we had to, um, just so that we did at least have partnerships so we weren't doing it by ourselves. But yeah, we did gluten-free and casein-free for a long time. And then later we did switch to a different diet called the specific carbohydrate diet, and we used that for five years, and that was a very restrictive diet. Um, but I just it it was a way of life. Once we started doing it, we stopped thinking about it. Um, I would say it's so much easier to do when they're young, you know, before they're 13 and have really strong opinions about food. It it does get much more challenging as kids get older. Um, but it it was doable. And once we had accepted it and did it, but we knew we had to sustain it. We could see if he started eating, if he was cheating, kind of I hate to use that word because it's not really, but uh we could tell he'd start to have gastrointestinal symptoms, and then that would impact his sleep and other things, and then his behavior would be different. And we can tell if he was eating something at school, he probably should avoid. So right.

SPEAKER_01

No, wonderful. I love how you've just

Setbacks And Long-Term Diet Reality

SPEAKER_01

you've just identified the the arc, right? The the cycle. What he eats, you can tell. Next thing sleep is off, then behavior is off because everything it everything is controlled by the butt in the butt, right? Same brain, same god. So so important for for those of you listening, right? And thank you again for taking a deeper dive into his symptoms. So, what will you tell the parents who's listening and saying, My goodness, I don't even know where to start?

SPEAKER_00

That's a great question. Uh, on Aira's website, we have I'll say this Autism Research Institute. We used to have live conferences and that sort of thing, but we really decided in a very purposeful way, about gosh, it's 12 or no, 14 years ago now, that information that's highly evidence-based by very qualified presenters should be free. It should be free to to parents and to providers and to everybody else. So on our website, we do have absolutely for free webinars, and many of them do address these co-occurring conditions, and some of them also address nutrition. Um, we also have some upcoming talks on that. So, you know, people can register for free on the site. If you can't make it live that day, it's completely fine. We put them up within four to six hours so that people can watch them. We don't want people to have anxiety if they can't be there during the webinar. Um, it's what I wish I could have had. I felt like there was nothing free when my son was experiencing this, and we really wanted it to be free. Um, there were a couple, I shouldn't, I should give credit where it's due though, there were a couple of organizations that were publishing some of this information for free, who I think shared that same ethic that parents shouldn't have to pay to get lists of what gluten-free food are. And and those definitely helped me. ARI was one of them. There were a couple of other organizations as well that that really were committed to that and continue to be. So I'd encourage parents that way too. Just always be careful about who you're listening to. You really want to make sure that it's somebody who's highly qualified, you know, somebody who really has your patient's best interest in mind. I think there are most people really do, but you want to always think, you know, who is this person? You know, what's their background and and be mindful about that. Yes, yes.

SPEAKER_01

So so true. So you mentioned, I have a question. You mentioned that Grant was on a special diet until 11. So what happened after age 11 on the well, you know, they go to middle school.

SPEAKER_00

And it got it got much trickier, yes. But I would I would say this. I mean, we could tell that it was impacting his sleep, but it just at that point for Grant, and I'm not saying this is true for everyone, but we could communicate with him in a meaningful way where we could talk to him about it, and he could just tell us, you know, this is what happened. And we we also got to the point where we felt like, you know, there was as much cost for him being in a constant power struggle with us about a diet. There we just got to this point where we felt like he needed to make a decision about it being meaningful to him and helpful to him. So otherwise it was just we were gonna be the state patrol for the rest of our life. Right. And and that's that's hard to mediate. But certainly when he was younger, it was very manageable. And and I I found other parents, grandparents, as long as we didn't overemphasize it, it was they were fine with it. Like

Free Evidence-Based ARI Webinars

SPEAKER_00

most people are very supportive. They didn't they didn't seem to have a problem with it. Now I think different families have different cultures around that. But I think you know, it is hard as parents. We have to advocate for our kids so much, and this is yet another thing that you have to do or might consider doing. Um, but I will say for the kids who benefit from it, like Grant did, it I don't regret doing that. It was it was worth helping him have have better health so he could sleep and and have better time. Yes.

SPEAKER_01

And so Grant improved. How did your sleep improve?

SPEAKER_00

Yeah, we didn't sleep those first two years. I mean, it it was tremendously stressful. Um and I mean it once he started sleeping, obviously we started sleeping better and we were much more able to be impactful parents and and not be panicked all the time. I mean, I think we had been so panicked, but I, you know, he was our only child at that time. He was our first. So um, yeah, once he was sleeping better, we were much more capable and able to feel balanced and able to navigate a diet. I mean, a diet takes executive planning, you know, you've got to make and it's easier these days because we have these different shopping tools and you can do it online and that can be really helpful. And and that didn't exist then. Um, but you still have to, it's a mindful thing and it's every day and it's it's tricky. So yeah, I I think sleeping better as a family, and and I was gluten-free and dairy-free during that time too. I I wouldn't say I ever went completely SCD, but I was definitely very much walking with him on that on that diet.

SPEAKER_01

Yes, and that's an important point I was hoping you would say, because I was gonna ask you next. Did your did your family also do the same thing? Because it definitely helps if the family does it together. So we're not pointing fingers at the kid and say, don't eat that, right? Eat it. And it's like that's definitely not helpful.

SPEAKER_00

I mean, mostly because it was just easier, right? You're just gonna cook. And the other thing, there's so much good food that is just if you're just eating whole foods, it can happen pretty naturally anyway.

Middle School Autonomy And Food Battles

SPEAKER_00

You know, it's it it really can. It wasn't that hard in that way. Um, I mean, obviously, if my husband was out for lunch with friends, it didn't matter if he went and ate whatever he wanted. But yeah, in front of Grant, we modeled that this is just what we eat. And and then he wasn't, I mean, I'll be honest, I don't think he was aware of hostess products or any of those things until he was about six. I don't think he knew till he went to school really that those things were out there, so he didn't know that he was being, you know, right, right. I mean, since they weren't in the house, I'm sure he experienced them sometimes, but even at his preschool, they were they were doing pretty healthy things, so and and they were doing gluten-free things. And so it wasn't, I don't I didn't feel like it created any kind of stigma or or separation for him, and doing it as a family was good for all of us for sure.

SPEAKER_01

Yes, yes, I can attest to that myself. Yeah, yeah, much easier, yes, and it's just yeah, so what so wonderful. Thank you so much for sharing that. Um, do you have one last tip you want to live with our parents who are listening and who just feel like, okay, I've heard where to get started, I've heard where to get resources from. How what do I like how where can parents get sustaining power from? Because that's something, right? Life keeps throwing balls at us. How do we stay on track with this?

SPEAKER_00

Yeah, that's that's hard. I mean, reinforcement works on parents too. I mean, I would try, I know it's hard though. I remember people would give me the airplane mask thing, tell me to put the oxygen mask on myself first. And it just isn't when when you're under that kind of stress, it's it's not actually helpful sometimes to hear that. I think the the more important thing is just trying to find something every day that went well. Even if it went well, it doesn't mean that you hit a home run, just something that that went well. That was something that I really tried to do, really try to focus at that level, like today this went well, you know, and and not to not to count all the things that didn't go well, like which were frankly for the first many years, usually that there wasn't a balance there. But I was always trying to think about that and then trying to appreciate the

Daily Hope Practices For Parents

SPEAKER_00

really caring people who turned up, and not everybody was caring, but when somebody got my kid, they really got my kid, and I really try even now, years later, I haven't seen some of those people in probably 20 years, but I still remember them and reflect on how great it was that I saw my kid and they could see my kid, and that's a small thing, but it it really gives you hope and heart about everything, I think.

SPEAKER_01

Yes, yes, hope and heart. I love it. There is hope, parents who are listening. There's hope, always hope, and it helps our brains like feel like we can keep going when we focus on the good, the good, the good. So that's your assignment. Parents find one good thing every day that you can celebrate about your child, about yourself, about what's going on in your life, because it definitely helps get you up in the morning to continue living life like you should. So thank you so much, Miss Fulton, for sharing.

SPEAKER_00

Hey, thanks for having me. I really appreciate it.

SPEAKER_01

Yes. So tell um parents listen again one last time where they can find information about ARI. What's the website, please? We'll put it.

SPEAKER_00

Yes, it's completely free. Uh, go to autism.org and you can click on webinars, you can click on continuing medical education. Anything that you find there is completely free. And we hope that you'll use it and share it. Um, it's it's our honor to provide it.

SPEAKER_01

Yes, yes. I've had the pleasure of doing a couple of webinars on your platform, and I'm grateful for the opportunity. So, parents, yes, there's loads and loads of amazing information on there that will be so helpful.

Where To Get Help And Share

SPEAKER_01

And if for any reason you're waiting on a wait list and you haven't gotten the diagnosis of the evaluation that your child needs, just reach out to us at Globediatrics. Also, we provide nutritional, looking at the root causes of what's going on with your children in terms of GI distress, in terms of focusing, helping them with their sleep. If you're if you're struggling with any of that with your children, please reach out to us at Globe Pediatrics as well. So, until next time, please share this with someone, a family that needs to hear this and be well. And remember, look for the one thing every day that you can be grateful for. Thank you again, Denise, for coming on.