The Autism Diet - Why it's Harmful

The Autism Diet - Why It’s Harmful

Note: This post was first published on my original blog - Celebration Generation - on August 31, 2020. It was transferred over to this blog - existing comments and all - on 4/2/2021

I was laying in bed - wide awake - early this morning, thumbing through Facebook. The subject of autism and food came up... and this rant was born.

What I have to say on the subject is just way more involved than a Facebook reply is suitable for!

Terminology and Definitions

Before I get started on the rant, I want to lay out some terms that may or may not be familiar, and define them in terms of what I’m about to say. It’s important to be on the same page!

Co-Morbidity, Co-Morbidities

A co-morbidity is something that can - or tends to - occur alongside another condition or state, without actually being *part* of that state.

This is an important term to understand when it comes to matters of autism, as many people tend to conflate co-morbidities of autism, with autism itself.

This isn’t simply a matter of mis-speaking or mis-labeling something, as it actually has a fundamental effect on how autism is seen and dealt with.

A couple of examples:

Ehlers Danlos Syndrome

EDS is a fairly common co-morbidity to autism, especially among female autistics.

It’s a connective tissue disorder than affects MANY autistics, but it’s not actually part of autism itself. Not every autistic has EDS, and not everyone with EDS is autistic.

ADD / ADHD

ADHD is almost a grey area example when it comes to co-morbidities, as many of the ways ADHD manifests - especially in girls - overlaps with the way autism manifests in that same community (ie: especially for girls).

You can have ADHD, you can be autistic. You can be Autistic AND have ADHD, or you can be one or the other. They’re two separate issues - one of them applying doesn’t necessarily mean that the other will, not by default.

Digestive Disorders

Autistics have a high rate of having digestive disorders, such as gluten allergies, Celiac disease, IBS, etc.

As with the other examples, these are separate issues - You can be autistic and have Celiac disease, or not. You can have Celiac disease and not be autistic - they are not one and the same.

Non-binary or Transgender ID

I want to be clear - I don’t like the idea of calling gender ID a “comorbidity”, as I think it unnecessarily medicalizes it... but for the purposes of this rant, I can’t think of a better way to address it.

Autistics have a much higher rate of being transgender or nonbinary than the general population, and vice versa.

***

In each of these examples, knowing and responding to each “co-morbidity” is important. Many people with ADHD live a better life with medication. Those with Ehler’s Danlos can access therapies, information, etc (varies based on form). Those who are transgender can choose to live as their true selves.

The thing is, while each of these are common to autistics, it makes no sense at all to assume that any - or all - of them automatically apply to all autistics.

Imagine putting a kid on stimulants immediately upon an autism DX, putting them in physical therapy for EDS, or treating them as though they’re no longer cis gender... as a default response to autism.

It makes no sense, and could be outright harmful in each case. This is an important concept to understand, when it comes to The Autism Diet, and I hope these examples have adequately laid it out!

Correlation vs Causation

Correlation and causation are two concepts that people tend to conflate in general, and never has that been more obvious than it is these days, during the pandemic.

Correlation

Correlation is the statistical probability of two states, events, etc occurring, with no direct causal relationship between them.

Observation of a correlation between two states, events, etc is generally a cause for further investigation to see if there IS a causation, however.

As an example, if you were to look up sales charts of sun screen and sun glasses over time, they probably look fairly similar.

Buying sun screen doesn’t make you buy sunglasses or vice versa, however. Sales of the two are correlated, without any causal relationship between the two.

Causation

Causation is the acknowledgment of a causal relationship between two states, events, etc. One causes the other, as a direct “cause and effect” relationship.

If you eat, you will eventually excrete it. If you exercise, you will burn calories. “If X happens, Y will result” is causation.

****

With regards to my earlier examples..

ADHD could be correlated to autism, but there’s no proof either causes the other, and the same goes for Ehler Danlos Syndrome.

Autism doesn’t cause digestive problems, we just have a higher instance of HAVING digestive problems - actual, diagnosable digestive issues that exist completely separate of autism.

Trans and nonbinary ID is more of an interesting case, as no one is really sure if it’s correlation or causation.

Are you simply more likely to be trans if you’re autistic, or does living as an autistic make it easier to recognize - and acknowledge - ones’ ID if it’s something other than cisgender?

The thing is, we’re more likely to shirk society’s arbitrary expectations surrounding things like gender, in the first place. We learn - and usually come to accept - that we’re different from others from a very early age.

Along that same thought, are autistics ACTUALLY more likely to *be* trans or nonbinary than allistics, or is it more a matter of recognizing it and being equipped to roll with it?

I’m sure this sounds completely off-topic in terms of talking about the Autism Diet, but I think it’s very much in line with the digestive issue.

ARE we really more likely to have digestive issues? Or is it that - due to our sensitivities - we’re just more likely to feel any digestive issues that arise?

“The squeaky wheel gets the grease”, and all.

Dietary Sensitivity vs Sensory Sensitivity

I’m going to use the term “sensitivity” when discussing The Autism Diet, but it’s important to realize that there are two different types of sensitivity at play here.

Dietary Sensitivity

Dietary - or systemic - sensitivity is when one is sensitive to a food or component of a food - usually a protein - when it comes to actually processing or digesting it.

It has nothing to do with preference or sensory sensititivies, though dietary sensitivity can lead to a preference via pattern recognition and negative association.

As an example, I have a sensitivity to gluten. Eating gluten does all kinds of bad things to my body, including stuffing my nose and ears, gut problems, skin problems, bloating, etc.

I have never had a problem with *eating* gluten - I LOVE the stuff - but my body has other ideas about it, once it gets past my mouth. So, I tend to avoid it. (And miss it, terribly!)

However, if it was a more immediate reaction, I’d be more likely to form a negative association.

Sensory Sensitivity

Sensory sensitivity can happen alongside a dietary sensitivity, especially in those of us with heightened interroception (The sense of how things inside feel)

For instance, we’re really not meant to drink cow’s milk, in general. If two people - an allistic and an autistic - have the exact same mild internal discomfort after drinking milk, they could *feel* it in entirely different ways.

If the autistic has heightened interroception, something that the allistic barely notices may feel like a small bomb going off in the autistic stomach.

I think I’ve mentioned before - I didn’t realize that most people can’t feel their entire digestive path until a few years ago, and that FASCINATES me. Many of my autistic friends can, and most of my allistic friends can’t even imagine being able to feel theirs!

Anyway, now that I’ve gone into detail about that, I should say... that’s not actually the type of sensory sensitivity I’ll be talking about here!

For many autistics, certain textures, flavours, or colours of food are *extremely* off-putting.

As an example, as a kid, my husband could NOT handle foods that had a completely different texture inside and out - he brings up grapes as an example. He didn’t like the “popping” effect when the outer membrane was burst.

He’s mostly gotten over that, and in some ways he actually enjoys it now. He says it’s all about where in the mouth he chooses to pop it.

(Somewhat unrelated: Like many issues with sensory sensitivity, it can come down to control. If he’s controlling where it bursts, he can actually enjoy it. Neither of us can handle MOST loud noise, but with control over the *type* of loud noise it is, sometimes it can be enjoyable. I digress...)

For me, biting into toasted sandwiches can be unpleasant to the roof of my mouth. I have friends who gag over the texture of certain fruits.

I’m sure there are textures that even allistics would be put off by - or sensitive to - when it comes to putting something in their mouths. Slime comes to mind as an example.

The big thing to keep in mind is that for a lot of autistics, our threshold for acceptable textures, for the most part, is simply lower than what it is in the general population. We’re *sensitive*!

Autistic, Allistic, Autism Community, Autistic Community, etc

Autistic

Pretty self explanatory. An autistic is an autistic. The vast majority of the Autistic community prefers ID first language - ie “autistic” over “Person first language”, such as “person with autism” and “has autism”.

The general idea is that if you need a verbal reminder that we’re people, that’s on you. There is nothing wrong with being autistic, and the move to separate us from our operating systems - even just in title - is offensive to many of us.

Allistic

An allistic person is a person who is not autistic.

I haven’t seen any consensus from allistic people on person first language vs ID first language for themselves, so I suppose it could always end up to be “person with allism”.

... however, the majority of any group tends to see themselves as a “default” and doesn’t tend to spend much time on fussing with labels for themselves. We may never know if it’s “allistic” or “person with allism”!

However, as I find ID first language to be most respectful, I will be extending the courtesy to that community, as I do for my own.

Autism Community vs Autistic Community

Many people don’t realize that there are two VERY different communities, when it comes to autism.

The AUTISM community tends to be made of people adjacent to autistic people - parents, caregivers, professionals, etc. Generally speaking, the autism community is hostile and paternalistic to autistic people, and talks *over* autistic people.

The AUTISTIC community is made of autistic people.

I am very much of the “nothing about us, without us” way of thinking, and am disappointed to observe that the stances that come out of the autism and autistic communities tend to be very much at odds with each other.

Unfortunately, with the AUTISM community being made of “majority” people, their views tend to be given more weight than what the AUTISTIC community - the marginalized group - has to say.

Much like with issues on communication, ABA (Abuse!), and more... Autistic views on the Autism Diet are generally ignored in favour of those from the AUTISM community.

To be clear, the Autism Diet is a product of the Autism community.

Neurotypical vs Neurodiverse

For the purposes of this particular post, I won’t actually be using either term, and they don’t really apply - this post is about autism specifically.

However, I am frequently asked why I use “allistic” vs “neurotypical”, so I may as well address it here, while I’m defining everything!

“Neurotypical” indicates a person who has no known neurological differences. It used to be used to mean “non-autistic”, but in doing so, it erased the fact that autism is not the only atypical neurology. You can be allistic and not be neurotypical.

“Neurodiverse” indicates a person that has one or more atypical neurologies at play. Autism, ADHD, mental illness, etc.

Why The Autism Diet Is Harmful

The Autism Diet - both in theory and execution - is harmful in myriad ways, both to the individual autistic being “treated” by it, and the autistic community at large. Here are the main issues, as I see them:

Cures, Eugenics

Most of the marketing and promotion of “Autism Diets” is centered around the idea that autism - autism itself, rather than co-morbid conditions - can be “treated” with food.

For one, that’s simply bad science.

Autism is essentially our Operating System. To say it can be changed by what we eat is like saying you can change your Windows computer to a Unix one by using a different screen cleaner on it.

And before anyone tries to twist that analogy - food is not an operating system. Therefore, it would not be a “gotcha!” to claim that food is akin to reinstalling the computer with a different OS, as that “goes inside” it.

And, frankly, the idea of trying to change a person’s OS is horrifying and extremely hateful.

“Cure” language is incredibly harmful to autistics, both on an individual basis and to the community as a whole. As someone involved with autistic self advocacy AND as someone who grew up in an incredibly toxic environment, I have experience with both ends of that.

Individual Harm

I grew up constantly being told that there was something “wrong” with me, that I was “broken” and “worthless”, etc... and that was before I was diagnosed!

I can’t even imagine how much MORE demoralizing and awful it would be to grow up *these* days, with the internet, and warrior mom communities, and Autism Diets, etc.

There is an entire, incredibly profitable industry based entirely around catering to parents who see their autistic children as “broken”, and many of those promoting the Autism Diet are a part of that industry.

Imagine growing up with parents who see you as inherently broken, something to fix, etc. To be surrounded by comments comparing your operating system to cancer or diabetes.

Parents are supposed to nurture and protect their children. Autism isn’t a disease, and it’s not something that needs to be cured*. It’s incredibly damaging to subject kids to the constant idea that they’re broken and need to be fixed.

Community Harm

The pervasive idea that we’re “broken” and need to be “Cured” goes a long way to contributing to the systemic dehumanization and abuse of autistics in general, and it really does start from the ground up - how parents treat their kids.

The largest autism organization in the world is a eugenicist organization, openly promoting the goal of ridding the world of us.

Research is being done to be able to detect autism in utero, to prevent us from being born.

In multiple places around the world, autistics are being forced to sign DNR orders - with regards to Covid - specifically because they’re autistic.

In the US, autistic people can be exempted from minimum wage laws. It’s actually legal to pay us - and other disabled people - pennies to the dollar, as we are not afforded these basic human rights and protections.

Also in the US, several states have enacted mandatory registries of autistic people, and others are trying to bring them in. Fighting against Minnesota starting up a mandatory registry was one of the last things I did before leaving Minnesota.

To put a finer line on it: Requiring that medical professionals report autistics to the registry - and threatening that they’ll lose their medical licenses if they don’t - is not something that is being done in the best interests of autistic people.

AT no time in history - so far as I’m aware - has the mandatory registry of a marginalized group been anything positive.

I could go on for days on this, but I’ll cut it short.

While I’m sure that - for some allistics and other non-marginalized people - the idea of eugenics, registries, and the like are “a stretch” when it comes to harm caused by “The Autism Diet”, specifically... it’s important to know that it’s all connected, and nothing happens in a vacuum.

Anything that perpetuates the idea that we’re “broken” and needing a “cure”* contributes to the system that keeps us marginalized.

”Treatment By Default”

Remember when I pointed out how ridiculous it would be to automatically medicate a kid for ADHD or put them in EDS physiotherapy on receipt of an *autism* diagnosis?

The same applies to diet.

Not all autistics are the same, not all manifestations of autism are the same. While many people misunderstand “Autism Spectrum” as being a line between “Not autistic” and “Super duper autistic”, it’s more like... well, to use a food analogy, like a buffet.

Get 20 people together at a buffet, none of their plates are going to look the same:

- How they react to the various items on their plates will vary. Someone may really enjoy one particular item, and that same item may not work for another person.

When it comes to autism, that would be like... I LOVE having a super heightened sense of taste, and it helps me in food blogging. Other people hate having a heightened sense of taste, and it makes things hard for them.

- There will be different amounts of things on different plates.

As an example... my sense of interroception is far more sensitive than my husbands.

- There will be different things on different plates.

As an example... I have a gluten sensitivity, my husband does not. He has texture sensitivities that I do not have.

Now in general - for autistics and otherwise - diet is HIGHLY individual. While we all have the same basic needs - we need food and water - the specifics vary wildly between people.

Some can’t handle animal protein at all, while some have a heightened physical need for it.

Some people can handle carbs, others cannot.

There is an entire spectrum of food intolerances and allergies, some are correlated to each other, and some are not.

You can be allergic to just peppers, you could be allergic to ALL nightshade... or some nightshades, or none of them!

You can have a hard time with grain in general, or certain grains, or you could NEED grain.

Maybe you’re allergic to peanuts, or tree nuts, or a specific nut, or all of them... or none of them.

The idea that by virtue of being autistic, you have one set of specific dietary needs and exclusions is, frankly, hooey.

Back to the whole radical idea that “autistics are human, too!”... we have human bodies. And, as that’s the case, we have human dietary quirks and intolerances and needs that cannot be summed up in a neat little box of “autistics shouldn’t eat wheat or dairy”.

There are three main issues I have with the “Treating by Default” issue:

Unnecessarily Limiting Foods

For almost every food out there that causes a negative reaction in some, there are nutritional benefits to eating it, for those who DON’T react negatively to it.

Think of all the heart and health benefits touted for eating whole grain wheat. Obviously, that does ME no good, as someone who can’t handle wheat... but should ALL people avoid those benefits, just because I react poorly?

Hell no.

So why should autistics with no actual intolerance to something have it removed from their diet, by default?

Aside from the actual nutritional issues associated with unnecessarily limiting someone’s diet, there’s also the psychological ramifications.

Having food intolerances can be isolating. It makes things difficult when going out *as an adult*, and it’ll make things difficult in school, for kids. Why subject them to more grief than absolutely necessary.

I’m pretty sure that unnecessarily restrictive diets can lead to disordered eating, as well.

Avoiding Actual Food Intolerances

“My kid is autistic, and therefore shouldn’t eat __ , ___, or ____” may put dietary needs in a neat, easy little package... but it absolutely ignores the fact that intolerances outside of the “prescribed” diet can exist.

Kids don’t come with instruction manuals, and that applies to autistic kids as well. You wouldn’t expect to be handed a “Here’s what your kid can and cannot eat” manual for your allistic kid, so why expect it for your autistic kid?

Observe and address any food issues as they arise, just as you would for an allistic kid. Anything else is absolutely an disservice to the autistic being “treated”.

Framing of Autism

Going back to the whole thing of people seeing us as subhuman - or inhuman - the Autism Diet is problematic in that it denies our physiology as humans and categorizes us as our own group with apparently very specific needs that are not only different from others, but completely outside of the range of known human functionality.

Sure, our bodies can function a bit differently in some senses, but - like many other aspects of human bodies - the myriad of differences is highly individual.

The idea that the autistic body is different enough from the “normal” body as to require its own, specific Autism Diet - and similar enough to each other as to somehow be exempt - as a category - from dietary variation present in “normal” bodies is ... wildly offensive.

Frankly, you might as well just outright claim we’re a different species entirely.

Fundamental Lack of Understanding of Autism

Going back to the idea of the Autism Diet being used to “cure” autism - a lot of people don’t seem to understand that many of the “problematic behaviours” they’re trying to fix are *communication*, not *autism* itself. This is especially true of non-verbal autistics.

Say you have a cranky non-verbal autistic. You’ve missed the signs that they have a gluten-intolerance, despite them being uncomfortable, in pain, etc and *communicating* that in their own way.

They’re not using words, after all. SO many allistic parents are so hung up on spoken words, that they miss out on all of the non-verbal communication.

As an aside - the WILD thing about this is that autistics are generally tagged as “not understanding body language”... while the body language of our own people is generally ignored by their caregivers. Fun stuff.

So you happen across the Autism Diet, decide to put your gluten-intolerant cranky autistic on it... and it addresses the gluten intolerance. Huzzah!

Now your cranky autistic isn’t in pain all the time... and isn’t as cranky. Maybe their mood is better - must be a cure* - or treatment - for autism, right? That’s what the diet said, right?

No. You’re treating a co-morbid condition, mis-identifying the underlying cause as “autism”, and completely missing the actual issue in doing do.

This is a disservice to everyone involved.

When it comes to autistics - especially non-verbal autistics - various forms of non-verbal communication are just labeled as “autism” and completely ignored - or beaten into submission.

There’s an entire, extremely profitable industry geared entirely to suppressing autistic communication - though abuse - with the specific goal of making the autistic appear more allistic. I wrote about it in my post “ABA: What it Is, What it Is Not, and Why Autistics Are Fighting Against It”.

Trying to appear to be less - or non- autistic is exhausting. It’s called “masking”, and it’s a huge contributor to autistic burnout, C-PTSD, and the autistic suicide rate. Did you know that the average life span of autistics is something like 35 years, last I heard?

It’s because of things like this. Of having our actual communication and needs ignored, to make things easier for our allistic families, etc.

In the example, writing off “cranky because pain and discomfort” as “autism”, it just puts the caregiver in the position of writing off everything as “autism”, rather than something actually being wrong.

Kid is screaming? Oh, it’s just the autism, the kid is a monster. Nothing to see here, move along.

... no need to look into it and realize that they have a horrendous double ear infection. Just ignore it. If they can’t SAY they have an ear infection, they don’t deserve the care, right?

This is how autism moms sound to MANY of us, when they’re carrying on about their “monster” kids, btw. We tend to feel terrible for those kids, as we all know what it feels like to have our needs - and communication - completely ignored.

We know what it’s like to be dehumanized in that way.

Wow, I’m coming to the end of page 8 of this post, and could still go on. I’ll end it now - but am open to answering any questions, in the comments.

Let me just sum it up with

“So no... The Autism Diet not *just* a diet.”

* Note: Autism does not need a cure. There is nothing wrong with being autistic, and most of us would prefer to be the way we are, over being something else.

This is where understanding the difference between autism and co-morbid conditions comes into play. By all means, find a cure for EDS, IBS, etc.

To go back to the computer analogy... our particular OS may be more susceptible to certain types of malware (but LESS susceptible to others!) ... so get focus on the malware, not the OS. Our OS is just fine, thanks.

The Autism Diet - and Why It's Harmful.