07. Swept Under the "Autism Rug"
Do you feel like your child is getting swept under the “autism rug”?
On today’s episode, Brittyn is digging deeper into what it means to advocate for your child’s needs. There are a lot of symptoms that are commonly associated with autism, but does that mean that they're normal?
Each of your child’s symptoms deserves attention, and a specialist to help you dig deeper. Learn how to not let it get swept under the rug!
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IN THIS EPISODE
Common misconceptions about autism “symptoms”
What is the “autism rug”
Questions you should be asking your healthcare provider
Learning to advocate for your child’s specific needs
LINKS
Join the Autism Nutrition Library
Follow @AutismDietitian on Instagram
TRANSCRIPT
Welcome to the Nourishing Autism Podcast where you take a deep dive into the research on autism and dietary changes, nutrition supplements, and lifestyle modifications. Every week, we break down nutrition topics and an easy-to-understand way for you to feel less overwhelmed and feel confident on your nutrition journey with autism.
Hello everyone, and welcome to the Nourishing Autism podcast. I'm your host, Brittyn Coleman, the autism dietitian. And this week we're talking about the "autism rug". So I'm not quite sure that this is a commonly used expression, but it's something that I talk about with my Instagram followers and my clients often.
And it's something that I get really worked up about. So, buckle up for a good episode. So, while you might not know what I mean right now by the autism rug, I bet I can guarantee that all of you have experienced it in some way. So let me share a story, or a few stories that might feel pretty familiar to you.
Let's say your child is experiencing constipation. You've tried everything. Nothing's helping. So you go to the doctor and say, "Hey, I need help. My child is not going to the bathroom in four or five days, and this is a consistent issue for us." And they say, "Oh, you know, constipation is just a symptom of autism."
Here's some MiraLax to use indefinitely. And you say, "Well, I don't really want to use MiraLax." And they say, "Well, that's the only option. You know, constipation is so common in autism. MiraLax is your only option here." Or let's say that your child only eats three foods and you keep telling your pediatrician that you're really struggling, that they're not trying new foods, despite all of the recommendations that you've been given the starved out method, meaning don't give them any other foods until they eat something new.
I can just tell you right now, that almost never works and hunger for kids on the spectrum. Having a sensory issue does not resolve with hunger. Let me just tell you that, unfortunately, that's one of the most common recommendations on how to get kids with autism to eat new foods. So you're at the pediatrician and you're saying, "Hey, my kid only eats three foods" and they're saying, Hey, you know, that's a symptom of autism".
They're hitting their growth percentiles. Don't even worry about it. And you're like, well, I'm really concerned. You know, all they eat is chicken nuggets, French fries, crackers... and they say, no, it's not a problem. Don't worry about it. They're hitting their percentiles. It's just a symptom of autism. Or the last example, your child is headbanging they're self-injurious.
And you're saying help. My child is injuring themselves. They're headbanging. They're slamming their head on the floor, throwing their body on the floor. We have bruises and they say, "oh, that's just common with autism."
So, these are experiences of symptoms being swept under the quote-unquote "autism rug". There are a lot of symptoms that are commonly associated with autism, but that does not mean that they're normal. Each symptom deserves attention, and a specialist to help you dig deeper. Not just let it get swept under the rug.
I get so worked up about this. So I'm going to step in, I will say the scenario does not apply to all pediatricians. I kind of threw them out in front, but that's not the case. There are some incredible pediatricians who are going to help you explore and dig deeper into the symptoms and not sweep them under the rug.
But unfortunately, this situation happens way too frequently. So I get so fired up about this because your children deserve more than that. And it's because of this autism rug that kids and adults on the autism spectrum are so underserved and do not get the medical care that they need. One reason that this happens is because the medical community is not trained well in autism.
And I'll say that even for myself, even in my own training, not once when I was in school, was autism ever brought up and that's such a huge issue. A lot of people wonder, well, why aren't there many autism dietitians? Why aren't there many autism doctors? And it's because this is not an area that is pushed in school.
You know, we always talk about diabetes, renal, cancer, all of these things, of course, needing tons of people to help in those areas, but autism is never mentioned. And with 1 in 50 diagnosed on the autism spectrum now, maybe even more frequently than that, we need more and more specialists. So it's so upsetting that there, isn't more information for healthcare professionals in school to learn that this is an area to go into, an area that needs help.
So in my nutrition, when I was becoming a registered dietitian, It was only brought up in school because I was on a mission to learn as much as I could. I did all of my papers, my projects, all on autism. I requested all my internships at clinics where I could get experience. And I had an incredible mentor in grad school and shout out to Dr. Allen Knehans at the University of Oklahoma Health Center. Or Dr. K as he's very famously known. He led and guided me on my master's thesis, which was titled Food Aversions and Nutrient Deficiencies in Autism Spectrum Disorders. And he led me through autism, you know, being able to expand my knowledge on autism neurodevelopmental disabilities.
And I was so lucky to have him because there are not many people who have experience in this area. So shout out to him because he's incredible. So on that note, I mean, autism is incredibly complex. And for those people who aren't trained in the complexity of severe autism and are just taught; the textbook kids with autism have issues with self-injurious behaviors, poor concentration, constipation, picky eating.
And that's that. They're going to have no idea what to do besides medicate. Which let me clarify. I'm in no way against medication. I am against medicating without looking beyond the symptoms and the root causes to elaborate on that. Constipation is simple. It's a symptom, right? So we can medicate this symptom, like using the laxative, to make that symptom go away.
But the root cause of the symptom doesn't go away. So, the root causes of constipation might be food sensitivity, lack of fiber or water in the diet, and imbalance of gut bacteria. It could be a mineral deficiency or a combination of these things. So, slapping a laxative on top of that may alleviate the symptom, but it's not going to fix the underlying issue.
What will you ask, remove a sensitive? Drinking enough water getting more fiber in the diet, which might mean getting a referral to a feeding therapist to help you expand your child's diet, to get more nutrient-rich foods, to get more fiber, to balance the gut bacteria, to get more nutrients to replenish these nutrient deficiencies. All of this, helping with constipation, that's getting to the root cause versus us treating the symptom instead of the root cause. Now getting to the root cause of symptoms takes time, but it resolves the symptom long-term and promotes long-term holistic health.
Another reason, I often see kids on the autism spectrum get swept under the autism rug is that they can't communicate, and tell you what their words the discomfort that they're feeling. They might still communicate through their actions like headbanging if they have a migraine, pushing their tummies up against the back of a sofa because they're experiencing a stomach ache, or severe constipation might be tantrums because they just hurt and they can't tell you or their doctor their pain or advocate for themselves.
Now, some kids can communicate with their words, but they might not know what they're feeling isn't normal. I'll never forget. One of the first clients I worked with, that after working together, said, I just don't think my son knew what it felt like to feel.
And I say that all the time, a lot of times kids just don't know what it feels like to feel good. So they take their symptoms and their pain as normal. And sometimes they might not even connect the body to the brain they're hurting. And this is a sense called interoception, and interoception is a lesser-known sense that helps you understand and feel what's going on inside your body.
So kids who struggle with this interoception might have trouble knowing when they feel hungry or thirsty, when they feel full, hot, cold, have stomach pain, you name it. It's our ability to understand the feelings that we're having on the inside. So having trouble with this sense can also make self-regulation a huge challenge and it can lead to overstimulation and sensory overload.
If this sounds like your child, it is definitely worth bringing it up with your child's care team to put supports in place, to help them with recognizing their body's internal cues. So as we wrap up this episode, I just want to remind you that you are the expert in your child. Not me, not your pediatric. You. You are.
And if you believe that your child's symptoms are being swept under this autism rug and that they're not receiving the care they deserve, keep pushing and keep advocating. Heck, fire your doctor and find a new one if you have to. Remember that healthcare providers work for you. Not the other way around. Interview the healthcare team before working with them and ensure that they share your same mindset and the same approach.
And if that's putting nutrition first, you might consider looking for a functional medicine doctor or a dietitian like me to support you. If you don't have the option to fire your healthcare provider right now, do your best to come prepared to your appointments write down your questions, your concerns, symptoms, bring a log, and even bring research. Speak their language. Speak your doctor's language, which is research. So many people tell me that they joined my membership, The Autism Nutrition Library, to learn more about nutrition, but then it actually served as a tool to help them advocate for their children better.
So we have all these different topics about symptoms, nutrients, supplements, conditions, you name it. At the end of every note in the library, we have a whole section about autism in the research. We bullet point and break down the research in an easy-to-understand way so that you can digest this information. And then we cite all of the research studies that we pull from so that you could bring those to your pediatrician and advocate for yourself, for your child, and speak their language. And it's a really special way that my members have been using the library to help advocate for their kids. So if this episode resonated with you, I would be so grateful if you could rate my podcast five stars and share it with your followers on social media, to help me reach as many families as possible.
And as always, I'm so grateful you joined me this week. As we take the guesswork out of nourishing autism. Please, click subscribe so you can be notified when new episodes are published, and I will see you next week!
This podcast is brought to you by the Autism Nutrition Library, a one-stop hub and community for all things autism nutrition created to help you explore evidence-based nutrition approaches that have proved to be effective to help individuals with autism feel their best, do their best, and be their best.
Join now by clicking Autism Nutrition Library or by stopping by my Instagram @AutismDietitian. See you next week.
ABOUT Brittyn Coleman, MS, RDN/LD, CLT
I’m a Registered Dietitian, Autism Nutrition Expert, and the Creator of the Autism Nutrition Library.
I work with parents of children with autism to optimize their child’s diet, supplements, and lifestyle based on their unique needs. I help expand accepted foods for picky eaters, improve digestion and gut health, find the root causes of many symptoms, and ultimately help them feel their best so that they can do their best and be their best.
Not only do I relate to families on a professional level, but also on a personal level. I have been a part of the autism community for over 20 years, as my younger brother was diagnosed on the spectrum at a young age.
I look forward to working with you to uncover the root cause of your child’s symptoms and help your child be the best version of themselves!
