Today’s podcast is a little different. I’ve been collecting some news articles that followers sent to me last month, and now I’m going to share my thoughts with you! So, does aspartame cause autism? Do 37% percent of autistic kids outgrow their autistic traits? Or, is autism still underdiagnosed by age 16? Let’s talk about it today.
Contents
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References:
- Collins, Sarah D. “1 in 4 Teens With Autism May Be Undiagnosed.” U.S. News, 6 Oct. 2023. https://www.usnews.com/news/health-news/articles/2023-10-06/1-in-4-teens-with-autism-may-be-undiagnosedDrake, Kimberly. “Children Can Outgrow Their Autism Diagnosis, Says New Study.” healthnews, 5 October, 2023, https://healthnews.com/news/children-outgrow-autism-diagnosis/Fowler SP, Gimeno Ruiz de Porras D, Swartz MD, Stigler Granados P, Heilbrun LP, Palmer RF. Daily Early-Life Exposures to Diet Soda and Aspartame Are Associated with Autism in Males: A Case-Control Study. Nutrients. 2023; 15(17):3772. https://doi.org/10.3390/nu15173772
- Harstad Ehttps://www.psychiatrist.com/news/maternal-aspartame-use-may-triple-autism-risk-in-boys/ Hanson E Brewster SJ, et al. Persistence of Autism Spectrum Disorder From Early Childhood Through School Age. JAMA Pediatr. Published online October 02, 2023. doi:10.1001/jamapediatrics.2023.4003“Maternal Aspartame Use May Triple Autism Risk in Boys.” Psychiatrist.com, 2 October 2023,
Tilley, Caitlin. “Doctors Slam Study That Suggests Diet Sodas Lead to Autistic Children.” Mail Online, 25 Sept. 2023, www.dailymail.co.uk/health/article-12558191/University-Texas-pregnant-women-diet-sodas-autism.html.
Zahorodny, W., Shenouda, J., Sidwell, K. et al. Prevalence and Characteristics of Adolescents with Autism Spectrum Disorder in the New York-New Jersey Metropolitan Area. J Autism Dev Disord (2023). https://doi.org/10.1007/s10803-023-06058-8
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Transcript: Does Aspartame Cause Autism? News Commentary
Thank you to n. henderson for providing this transcriptions!
DANIELLE: Hello, my friends and welcome back to the Neurodiverging Podcast. My name is Danielle Sullivan and I am your host, thank you so much for joining us today. Today we’re doing something a little different, I’m a little excited. We’re going to be commenting on some news that has come out recently regarding autism, broadly. I’ve received a couple of emails from listeners and clients who have seen some stuff in the news regarding autism, especially in the US recently, and have some questions about it. So we’re going to look at these news articles today, and I’m going to tell you what I think anyway, and hopefully, some of you will write back or voice note back and let me know what you think, and we can have a conversation about this.
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Alright, so let’s dive into some of this autism news, shall we? So the first article I have was sent in by Lindsey, and I actually saw this, like, everywhere when it came out. The one I’m looking at, I’ll put a link in the show notes, is from psychiatrist.com, it’s called “Maternal Aspartame Use May Triple Autism Risk in Boys”. This one was published on October 3, 2023. What the article is discussing is a study that came out that showed a, quote-unquote, “Threefold increase in autism risk for boys whose mothers consumed the sugar substitute aspartame daily during pregnancy or breastfeeding,” end quote.
Now, a couple of things came up for me during reading this. And I do just want to say, you know, I’m not a doctor, I’m a coach, I work with autistic people, but I do also just want to recognize that when we’re trying to determine, quote-unquote, “the causes of autism,” which we know to be a really complex (laughs softly) thing to be looking for, autism, just to kind of give you a background, is known to have a lot of genetic contributors and also environmental contributors and I’m clearly firmly based in the neurodiversity movement, I think that there are a lot of different brains and a lot of different ways of being a person, and I think all of those ways of being a person are valuable and valid and should be supported, so I’m not somebody who’s kind of on the boat with finding the, quote-unquote, “cause” of autism so we can “cure” autism. I don’t think that’s a reasonable thing to want, and I think it’s kind of a hugely problematic thing to want.
However, I do understand folks wanting to understand the cause of autism because for me, and for many others, it is very apparent that what we are looking at when we are talking about autistic people is a group of people who are widely diverse, right? And I don’t just mean diverse in behavior, but also diverse genetically. People who have all sorts of needs, who have all sorts of comorbidities and other challenges that they’re dealing with, and I think that that points to the idea that we’re probably dealing with quite a couple of autisms, right? That there’s not one autism. What we’re looking at when we’re looking at autism and people with autism is people who experience a certain set of behaviors, right? That’s how autism is diagnosed in the US. We’re looking for a set of fourish behaviors that this person (stammers) experiences and engages in, and we are diagnosing based on an individual’s behaviors from an outside perspective.
Now, we know, especially over the last 10 years, that human behavior is not as straightforward (laughs) as many folks would maybe like us to believe. That our histories, our backgrounds, our experiences, play hugely! Our feelings, our medical needs certainly play hugely into our behaviours, right? And as we look at autism more and more and more closely, we recognize that there are lots of contributors to autism, right? And that I, frankly, don’t believe there is a cause, a single (laughs), singular cause of autism, but if there were there would have to be like 10 causes.
Like, there are so many different kinds of folks who have autism, right? And we’re starting to see a movement in the research to move into subtypes of autism, right? To start to talk about how autisms are different across these huge spectrums, but we’re not there with the research, yet. We’re not there with the research, yet. So, I just want to preface this whole thing by saying that’s what I’m looking at when I’m looking at a study that purports to say, “We’re seeing an increase in autism because of this one factor,” like aspartame ingestion in the moms, I have to be a little suspicious of that.
Not to say that it’s always going to be a false, but that anybody who’s trying to reduce a very complex set of factors of what creates an autistic nervous system down to one thing, like aspartame ingestion, I’m always going to be a little bit like eh, I don’t think that’s the whole story there. So anyway, I approach this article with a little bit of suspicion (laughs). Not that I don’t believe aspartame could be causing health problems, I very much believe aspartame could be causing health problems. I think we’ve seen a lot of evidence that artificial sweeteners cause significant health problems in lots of different kinds of people, but is it causing autism? Well, let’s look at this.
The article says that aspartame has been widely used since the 1980s as an alternative to white sugar, so we only have been using it for about 40 years, which is not that long in the history of, you know, consuming a product. Now, the study itself involves parents of only 235 children with autism, as well as 121 children serving as a control without autism. So, this is not a tiny study but it’s not huge, right? And it is a self-administered questionnaire, so they’re giving these parents a questionnaire and they’re saying, “Can you tell us about your lifestyle, your dietary habits, and any environmental exposures that you think your kiddos have experienced?”
Now, what the research has purported to find is that kids with early onset stable symptoms of autism, like behavioral or communication challenges, were more likely to have had mothers who drank a lot of food with aspartame in it, okay? This is also more likely to be observed in boys, boys were three times more likely to receive an autism diagnosis if their mothers consumed at least one diet soda daily, or the equivalent amount of aspartame, during pregnancy or while breastfeeding. They did not uncover a statistically significant association with girls.
So now when you read this one article from the psychiatrist in isolation, it really sounds like, whoa, this study showed that there’s this huge correlation between aspartame ingestion in the parent and autism risk of the child. Now, if you Google search the study a little more and if you look at the actual study, you get a little bit of a bigger picture. So, when I looked into it what I found is that a lot of people are very upset about this study for a couple of reasons.
So, first of all, it’s one study of 200 kids, right? Can you say, can you make this huge claim, that aspartame is the culprit, when you’re only looking at a small group of kids, and you’re only looking at self-reported data, right? Which is notoriously faulty because humans, even when we’re doing our best to report accurately, our memories are not great. Humans are gonna slant the data, right? So how can we make a huge claim based on this one study of just a couple hundred kids that is self-reported data?
A lot of people are saying we need future large-scale studies with better recognition of, kind of, human factors. We need to be looking objectively at measurements of maternal diets and paternal risk factors and really doing a lot more before we can say, “Hey, it’s the aspartame.” I found a quote from a Dr. Rachel Moseley, the Principal Academic in Psychology at Bournemouth University in the UK, who is quoted here as saying — She was not involved with the study, but in reviewing it said, “It would be highly premature and irresponsible to suggest a relationship between aspartame and autism based on this study. As every scientist knows, correlation between two things does not mean that one causes the other.”
Another person who was not related to the study, Dr. Deirdre Tobias, a nutritionist at Harvard University who is not involved in the research, said that it was, “Shocking that the authors would feel confident enough in this design to draw these conclusions,” and that the study was, quote, “Extremely flawed because the data was collected retrospectively and based on the mother’s memory of how much aspartame they consumed.”
She also pointed out that the sample size of the study was recruited from a panel of parents with an autistic child. So that means that these pregnant people had already parented an autistic child when they were recruited from the study, so of course there is a genetic component to autism, right? If you have an autistic sibling you are more likely for the next babies in your family to be autistic, right? So if they recruited from a group of people who were already predisposed to have autism run in their family, of course, there’s going to be a higher risk (laughs softly) or a higher likelihood of them having another autistic child on the way while they’re pregnant, and there’s really no way, once you find that out, to separate how the likelihood of them having autism already in the family, like, how aspartame could have affected that one way or the other. They were already kind of biased towards having autistic kids.
So I think we can safely say that this study doesn’t really add too much right now to our conversation around some of the influencers of whether a child is going to be diagnosed autistic or not. I would agree with those much higher educated folks who are saying the study is really flawed. It recruited from a group of people who are already predisposed toward autism, so of course you’re going to see a higher level of autism in the kiddos who were birthed while the study was going on.
The other thing I just want to point to though is that we have a huge history in the research of autism of blaming mothers and birth parents for autism, right? Which in itself is a hard thing to say. Autism exists and it’s part of the normal human range of being a person, and so we shouldn’t really be blaming anybody for having autism anyway. Back when autism was first being kind of understood as a collection of traits and diagnosed, it was strongly believed that autism was caused by mothers’ behavior. We have the fridge mother, right? The cold mother who doesn’t give her child enough love and that’s gonna cause autism. A lot of folks out there who believe this very pernicious myth that’s been disproved over and over and over again, that a mother’s behavior can cause autism in her child.
We also have mothers being kind of constantly considered as to what our behavior was during our pregnancy that could have “caused” — And I’m using caused in huge scare quotes here, so I hope that will be obvious to listeners who are not watching the video, that this idea that, first of all, that mothers can even cause autism, right? Like, yes, there might be some behaviors out there that contribute to the, quote-unquote, “risk” of autism or the likelihood of autism. There are also probably genetic contributors, right?
So in some ways, yes, you are a parent, your child is in you, your behaviors are going to affect that child. That’s very obvious. But we have to be really careful when we’re looking at research and when we’re conducting research as a community to shift away from this blame model of what the mother is doing is what’s causing the autism in her child because I have to say that as a parent, as an autistic person and also as a mother who has birthed two children, there is already so much pressure on parents to do what’s right for their kids, and there’s so little good research, especially certainly so little non-ableist research, on how to support autistic youth that it’s really hard as a parent to know how to support your autistic children the best possible way for the best possible outcomes of their wellness and mental health. But there has to be a boundary between looking at a behavior and blaming the person who is engaging in that behavior for a very normal neurotype being the result of it.
Always look at the cohort, look at who’s included in the study, look how many there are, where did they get their cohort from, how are they collecting data, right? Is somebody coming into the household and kind of doing an analysis based on their observation, or are they having people who are pregnant and stressed and probably very tired (laughs) reflect on what they did that day and calling it, you know, good, objective data when it’s clearly subjective, right?
There are values to these kinds of studies that ask people for their own experience, in some cases it’s really useful to use that kind of work, but when we’re trying to make a huge claim (laughs softly) about something like aspartame, which is prevalent in our beverages, affecting our autism likelihood, there’s so many things that affect autism likelihood and aspartame in that study was not isolated in any way, it’s just really important to look for that kind of thing.
Okay, so I hope that answers Lindsey’s question and is helpful and if you have ideas or questions about that you can go on the website or I’ll put a link below and leave us a voicemail and we can always do a follow-up.
This second study that I got sent a lot, so the link that I received, this was from Ben, and I received a link from healthnews.com, but I also found other articles about it and the title of this article is “Children Can Outgrow Their Autism Diagnosis, Says New Study,” and this was written by Kimberly Drake and the one I’m looking at was published on October 5, 2023, link is in the description below.
So, this article is about a study that was done from Boston Children’s Hospital and it claims that “researchers found that a significant number of children diagnosed with autism as toddlers no longer met the criteria for autism when they reach school age.” Okay? So, this study was published in JAMA Pediatrics, J-A-M-A I might be pronouncing that wrong. Researchers at Boston Children’s Hospital found that among toddlers diagnosed with autism spectrum between 12 and 36 months, about 40% no longer met the diagnostic criteria of autism by age six. So somewhere between age one and age six these kiddos who were diagnosed with autism are becoming what appears to be neurotypical.
Now, this cohort was about 200 kids and again, as I said, they were diagnosed between the age of one and three, and then the researchers followed them until they reached about five to seven years of age, and then used the same criteria from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, which is kind of the standard in the United States at the time of recording right now, to determine whether they still met the diagnostic criteria for autism, okay? Now, the reason that this news kind of blew up is because there’s this idea, right? That autism once diagnosed is persistent, that we’re going to have it lifelong, right? And I think that most autistic people, from my experience anyway, understand our autism to be innate, something we’re born with, something we’ll have when we die, it’s part of our nervous system, is it who we are, right?
Now, this study, the reason I think people are having feelings about it is because it’s claiming that autism is something that you can kind of pop on and pop off and that with certain interventions autism just disappears. I read the study, like the actual study not just the news write-up of it, and I have a lot of concerns about this study. So, first of all, these 200 kids that they recruited from the study, they recruited 213 children, 201 of them received, “autism-specific interventions,” quote-unquote, like ABA, Applied Behavioral Analysis. Now, we have not dug into ABA on this podcast before because it’s such a hard topic and it’s something that I’m looking to cover in more detail, but basically what I will say for right now is that if you are not aware Applied Behavioral Analysis, or ABA, is a type of “therapy” quote-unquote, that basically trains autistic kids out of being autistic.
It uses behavioralist interventions to anywhere from force to coerce children to reduce their stimming, to make different eye contact, to communicate different socially, and to basically behave in a more neurotypical manner even though that’s against their innate preference. ABA has been around for several decades and is touted in the United States, if you’re listening from international, as being the best intervention for autistic youth. Many parents, I would say most parents, are recommended to enroll in ABA when their child is diagnosed and I can also say that every adult who has gone through ABA that I have ever spoken to has talked about it as a deeply traumatic and disempowering experience.
That these children are not being supported for who they are and given accommodations that would help them but are rather being told that they have to be someone different, and the mental health outcomes for kids who have gone through ABA is not good. It’s not good. So anyway, out of 213 (stammers) toddlers, excuse me, who were in the study, about 200 of them received some kind of autism-specific intervention like ABA.
When you are training a child to not behave in the way that is intuitive for them, of course when you give them an assessment a couple years later they’re not going to show up as, quote-unquote, “autistic” anymore because even though — in my opinion — Their nervous system, they’re still an autistic neurotype. Their brain’s still autistic, their nervous system is still autistic. What you’ve done is, you know, whacked them with a newspaper until they stop stimming. That’s not changing their neurotype, right? Changing the behavior, for me, doesn’t change that innate identification as autistic. What you’re doing is causing children to suppress behaviors that they’re doing to meet their needs. And that suppression of behaviors might make them look less autistic from the neurotypical outside perspective, but it’s not really going to change who they are. They shouldn’t need to change who they are in my opinion. And I think you’re just telling me that you have traumatized 200 kids enough that now they don’t look autistic in front of you anymore. So that’s one thing.
The second thing is we know that kids starting really young learn to mask autistic behavior, right? ABA might be explicit in punishing or negatively reinforcing behaviors that neurotypical people don’t want to see from autistic youth, but we know that neurotypical society is deeply ableist and just the society in and of itself is passively negatively reinforcing autism from when these kids are born, right? And I’ve talked about that before on this podcast that when you live in a neurotypical society, society that’s not built for who you are and doesn’t support you, you internalize all this stuff as being you’re not good enough, you’re not trying hard enough so I must mask who I am and try to look more neurotypical so that I will be accepted, so that I will be supported, so that I won’t be ostracized from society.
Now, I would say from my experience both as a coach but also just as a human who is autistic, I wasn’t diagnosed ‘til I was 32 or 33 but I was masking from when I was probably five or six that I can remember, and I’m not going to say I wasn’t masking before that. The parent coaching I do allows me to see kids from very young sometimes, and kids can mask really young, and I think we have research on this as well, especially girl children often, not always, but often, learn to mask very, very young. So when I look at this, quote-unquote, “study” what I see is you have, first of all, punished a bunch of kids enough that they don’t want to look autistic anymore and you have taught the ones who are able to mask to mask by the time they are six.
And so of course, if you’re going to say 40% no longer meet the diagnostic criteria, you know, you’ve punished it out of them and I think that’s awful! I would like more people to be aware of what survivors of Applied Behavioral Analysis say. I have talked to parents who are like, “Oh,” you know, “It’s nice now, it’s gentler now, it’s really improved as a field.” Survivor accounts, even 12-year-olds now, do not tend to uphold that perspective. Most autistics that I’ve met may have — Will tell me when they were kids they thought it was helpful because it helped them fit in, but then as they became adults they realized they still weren’t fitting in, and now they don’t know how to be autistic or neurotypical.
It is suppressing a reality of someone’s existence. I think it’s a human rights violation and I don’t support it, and I think it’s really, really sad that some organizations are touting this as results as positive that, like, we have punished kids enough that they don’t look autistic anymore. That’s awful, and I encourage people to learn more about ABA, to talk to people who’ve been through it, autistic people who have been through it, and really be curious. If you believe that autism is a neurotype, that it is innate, that it is part of a human, then how can we be okay with devaluing the humans who are autistic? If every human life is valuable and if every human has worth, then how are we going to say, “We all need to act the same way, we all need to behave neurotypically,”? That’s not demonstrating human worth to me.
Okay, and then the last study I want to talk about comes from Georgia. This is called “1 in 4 Teens With Autism May Be Undiagnosed”. So, this was written by Sarah D. Collins at HealthDay, I will put a link below, it was published on October 6, 2023, and this article is about a study out of New Jersey from Rutgers which does a lot of research on autism, they have a whole cluster of researchers there, and in this study, the team reviewed school and health records of close to 4,900 16-year-olds living in four northern New Jersey counties in 2014. I think this was actually including the county where I grew up, which is kind of fun for me. And the initial review found 1,365 cases that they wanted to look at more closely.
Out of those 1,365 cases, a diagnosis of autism spectrum was confirmed in 560 according to the study. And from those 560, 384 had been diagnosed autistic at age eight, and 176 met the criteria for autism at 16. To, “Put another way,” the study says, “1 in 55 kids in the four New Jersey counties had autism, but one-quarter were undiagnosed until this study took place,” okay? So what that is saying to us is that despite this idea from the last article that we can, like, intervention autism away, we still have a prevalent issue of underdiagnosis of autism.
Now, I tried to look and see if this was a case of kids from underprivileged areas who maybe didn’t have access to assessment services, or kids of color. We know that Hispanic and Black youth in the United States are often way underdiagnosed with autism. The study authors said that 1 in 55 boys and 1 in 172 girls in the cohort were identified with autism, and it was found to be twice as common in teens from higher-income households compared to low-income ones, and autism was also more prevalent in white teens compared to Black teens and Hispanic teens. There weren’t enough Asian teens in the cohort for them to compare the rates.
This is totally conjecture, right? So I’m not saying this is true, but it was really interesting to me to see that if autism was twice as common in teens from higher-income households but those kids were not being identified, it does seem likely to me that possibly one explanation for that is that the higher-income households are able to afford more supports, so even though their kids haven’t been diagnosed officially on an autism assessment, that maybe they’re able to, you know, advocate better in the school system, maybe they’re going to better schools where their IEPs are more likely to be followed, maybe there’s more classroom support, maybe they can get tutors, maybe they can adjust their household to support their autistic kids if they’re higher-income compared to lower-income kids.
The other thing I found more interesting was that in this study autism was more prevalent in white teens compared to Black teens and Hispanic teens. Now, this might still be evidence of kind of a race issue. We know that clinicians tend to be biased. If they’re white clinicians they tend to be biased against Black teens and Hispanic teens. That bias can be subconscious certainly but it exists, and so we do know that white clinicians are less likely to diagnose Black teens and Hispanic teens with autism. I don’t know if these clinicians in the study were white and, again, this is conjecture, it may be that there are Black teens and Hispanic teens that were in this cohort that were not diagnosed that should have been, that could account for it being more prevalent in white teens. That’s kind of unclear to me, but it was very interesting to look at that number.
So what do I think about this study, that one in four teens with autism might be underdiagnosed or undiagnosed? I think that’s really likely to be true. Everything that I know, again, not as a medical professional but as a coach, as somebody who works with late-diagnosed adults literally every day and many of them have children, I think that until recently people like me were not diagnosed, right? And so you have generations of people who maybe have a family history of autism, but that autism wasn’t diagnosed. We’ve talked about this before, that for many of us once we are identified as autistic we look back and we think about a grandfather who was a certain way or a great aunt who was a certain way, people who clearly had special interests, who were different socially, different communication-wise, who would likely be diagnosed with autism today but weren’t at the time because maybe they didn’t have an intellectual disability or maybe they were still able to produce in society and so they were just thought of as the oddball, right? Or the weird, eccentric person.
Nowadays a lot of those folks, not all of them but a lot of them, would be diagnosed with autism, and so I can speak from my family’s history that now that I know I’m diagnosed I can see strains of it going back pretty far. So when I see a study like this that’s saying it’s still underdiagnosed, I really think there is a likelihood that many families have a history of autism and are just not aware of it, because if it’s in your family you just kind of get on with it. You just assume it’s normal, like all families are like this, and until you interact with the world and you interact with other people you don’t always realize that your family is the odd one out, right? Or your family is doing things differently. So I am not surprised to see research indicating that autism is undiagnosed, even among white boys (laughs softly) in New Jersey. I think we know it’s underdiagnosed in other populations, in women, in girls, in queer people, in trans people, in Black and Hispanic people, especially boys. I would not be at all surprised to know it’s also underdiagnosed in teenage white boys. So, that’s my comment on this study, you can see the link below.
I hope this little bit of a different episode was helpful was for you or interesting to you. If you liked it let me know, we’ll do more. If you have comments on any of the studies that I talked about, especially if your perspective is different or if you have a different, like, academic background than I do, I would really love to hear them. You can email us at contact@neurodiverging.com or click below to leave us a voicemail. If you do leave a voicemail we may use portions of it in an upcoming podcast, though we will strip away any privacy concerning information from that if we do broadcast it, but just so you know.
If you did like this episode people consider supporting us on Patreon at patreon.com/neurodiverging, and thank you again so much to the patrons who make this possible. All the links to the news articles and everything else are in the show notes at neurodiverging.com. I look forward to talking to you again soon, and please remember that we are all in this together.
Try saying, “Aspartame ingestion in the gestating parent.” This article seemed to really show a correlation between aspartame ingesting (pauses) — Aspartame (pauses) — Aspartame ingestment in the gestating parent (pauses) — I’ve forgotten what I was saying.