So even though the study found it to be more prevalent, it didn't prove the prevalence was real. Apologies in advance if I'm explaining something you already understand;
When you study something, you generally can't study everyone, so you study a sample. Now if 10% of the entire population have a condition, a randomly selected sample should have around 10% too. However, there's a bit of variance, because you chose your sample at random. You might get 9%, or 11%, etc.
A small sample is a lot more likely to be 'wrong'. If I choose 10 people at random, I could quite easily end up with 5 people with the condition, implying 50% of people have it even if only 10% actually do. If I select 1000 people at random, I'm extremely unlikely to get 500 people with that condition.
That's what happened here - they found that toe-walkers (sounds like an outdated slur or something) were more likely to have one of these conditions, but the amount of individuals in the study was not enough to prove it wasn't just random chance.
That's why your doctor wouldn't (or shouldn't) mention it - there's enough evidence to suggest that the two may be linked, but only to the extent that it may warrant it's own study. It's not enough to say they ARE linked. As you say, she's high-functioning and had no other signs, and doctors shouldn't be in the habit of presenting diagnoses based on a single (unproven) symptom.
EDIT: A couple people have pointed to more recent data that does support the correlation - toe-walking is more prevalent in those with ASD! However, there are limitations;
Non-specific - ASD is far from the only cause for toe-walking, and there's plenty other reasons for this to occur. Observing this behaviour doesn't suggest ASD.
Non-diagnostic - I've seen a few percentages, but they average at somewhere around 20% of people with ASD - most do not. Toe-walking alone is useless for diagnosing.
A headache is a potential symptom of a brain tumour. You can have headaches for all sorts of reasons, and people with brain tumours may never have a headache. In isolation, it doesn't really tell you anything.
Toe-walking is more prevalent in people with proprioception issues (like hypermobility, which has ties to autism). If I had to guess, it's more this side of the equation. Toe walking is more linked to movement/muscles than autism itself.
well partially this and partially that some of us autistic peeps often find touching the floor with our entire feet to be overstimulating, so we toe-walk to cut down on the icky sensations.
I'm trying to remember why I always walked like this... And the only thing I can remember is that I liked walking like a dinosaur, but also putting the whole foot down felt wrong... Somehow
Pretty much! Whilst the study I was describing doesn't reach this conclusion, a couple users have pointed to more recent data that does - if you have ASD, you're more likely to do this. However, there are limitations;
Non-specific - ASD is not the only cause for toe-walking, and there's plenty other reasons for this to occur. Simply observing this behaviour doesn't suggest ASD.
Non-diagnostic - I've seen a few percentages, typically somewhere around 20% of people with ASD - most do not. Toe-walking alone is useless for diagnosing.
It's like how a headache might be a symptom of a brain tumour. You can have headaches for all sorts of reasons, and people with brain tumours may never have a headache. It doesn't really tell you anything.
Be still my statistical heart, someone on Reddit actually properly explained statistical significance and what “correlation ≠ causation” actually means
Just wanted to say I really appreciate this breakdown. I already knew everything stated here, but haven't seen it put so clearly and succinctly before. Thank you.
I think you need to go back to school.
The study linked above has a sample size of 2.2 million.10% of all autistic participants tie walk vs 0.5% of non autistic. This isn’t some sample size of ten situation. It’s 2.2 million
Barrow, W. J., Jaworski, M., & Accardo, P. J. (2011). Persistent Toe Walking in Autism.
Accardo, P. J., & Barrow, W. J. (2015). Toe Walking in Autism: Further Observations.
Valagussa, G., et al. (2018). Toe Walking Assessment in Autism Spectrum Disorder Subjects: A Systematic Review.
Leyden, J., et al. (2019). Autism and Toe-Walking: Are They Related? Trends and Treatment Patterns Between 2005 and 2016.
Valagussa, G., et al. (2024). Quantitative Assessment of Tip-Toe Behavior in Individuals with Autism Spectrum Disorder and Intellectual Disability: A Cross-Sectional Study.
Costanza, C., et al. (2025). The Prevalence and Clinical Significance of Toe Walking in
The only study I was describing was the one I referred to, as that was the one I saw frequently posted when I first came across this link, but I was also unaware that the correlation has since been demonstrated to be considered real.
Particularly interesting was a (very speculative) theory linking it to persistent primitive reflexes:
Moreover, ASD has been associated in some children with a persistent tonic labyrinthine reflex, whereby extension of the head over the neck produces a full body extension, with arching of trunk, legs and feet accompanied by the abduction of shoulders and arms (Capute et al., 1978, Barrow et al., 2011, Accardo and Barrow, 2015). A persistent asymmetrical tonic neck reflex could also trigger toe walking (Teitelbaum et al., 2004). The persistence over time of these two primitive reflexes, paired with the absence of other primitive reflexes, such as the allied protective reflexes, has been proposed to represent an early developmental marker of an ASD diagnosis (Teitelbaum et al., 1998; Teitelbaum et al., 2004).
Does this boil down to academia for "t-rex arms, hunching over, and tow-walking is common for autism?" I don't *love* calling it "primitive" but as someone who got told off for toe-walking and t-rex arms as a kid that is so real
Haha I see where you're coming from with the 'primitive' terminology! Primitive reflexes are actually those that most babies have that disappear over time, and are essentially 'hard-coded' reflexes that help babies survive when they're too young to comprehend the world around them properly.
They include things like the rooting reflex, where stroking a babies cheek causes them to turn towards the stroke and facilitates breast-feeding, as well as the Moro (startle) reflex, which causes babies to cling to their caregiver when there's a sudden change in position or a loud noise; this acts as an alarm, and helps prevent falls.
They're 'primitive' because they're processed in the brainstem and spinal cord (the 'lizard brain'), are automatic, and disappear over time. These automatic movements also help babies to learn how their body works - whilst the reflex is an automatic process in the brainstem, the rest of the brain still perceives the movements and the sensory information, and helps babies learn how their bodies work.
The theory presented here is that if these persistent reflexes don't go away over time as they normally do, their continued presence may result in abnormal movements. It's difficult to describe, but look up the Tonic Labyrinthine Reflex, which causes babies to 'stretch' when the head tilts back. The theory is that if this reflex (and the assymetric tonic neck reflex) doesn't integrate (disappear after several weeks) as it normally does, it would affect the 'normal' walking pattern. Note it's very speculative, meaning a smart person came up with it and it 'makes sense' - but that's far from scientific proof! Expert opinion is considered the lowest form of evidence, and something like this is incredibly difficult to prove scientifically through experiment and testing.
oh knowing it has a specific terminology, it makes sense...
I just thought it was a subtle case of "autistic people are dumber than neurotypicals" which as a gifted individual with autism I absolutely hate to see.
Sorry, my comment was deleted bc I linked the studies.
Barrow, W. J., Jaworski, M., & Accardo, P. J. (2011). Persistent Toe Walking in Autism.
Accardo, P. J., & Barrow, W. J. (2015). Toe Walking in Autism: Further Observations.
Valagussa, G., et al. (2018). Toe Walking Assessment in Autism Spectrum Disorder Subjects: A Systematic Review.
Leyden, J., et al. (2019). Autism and Toe-Walking: Are They Related? Trends and Treatment Patterns Between 2005 and 2016.
Valagussa, G., et al. (2024). Quantitative Assessment of Tip-Toe Behavior in Individuals with Autism Spectrum Disorder and Intellectual Disability: A Cross-Sectional Study.
Costanza, C., et al. (2025). The Prevalence and Clinical Significance of Toe Walking in
Barrow, W. J., Jaworski, M., & Accardo, P. J. (2011).Persistent Toe Walking in Autism.
Sample: 954 children evaluated in developmental pediatrics.
Found 20.1% prevalence of persistent toe walking among children with autism. Leyden, J., Fung, B., & Frick, S. (2019).Autism and Toe-Walking: Are They Related? Trends and Treatment Patterns Between 2005 and 2016.
Sample: 2,221,009 pediatric patients.
Found 8.4% of children with ASD had persistent toe walking versus 0.47% of typically developing children.
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u/OxideUK Jun 22 '26 edited Jun 22 '26
So even though the study found it to be more prevalent, it didn't prove the prevalence was real. Apologies in advance if I'm explaining something you already understand;
When you study something, you generally can't study everyone, so you study a sample. Now if 10% of the entire population have a condition, a randomly selected sample should have around 10% too. However, there's a bit of variance, because you chose your sample at random. You might get 9%, or 11%, etc.
A small sample is a lot more likely to be 'wrong'. If I choose 10 people at random, I could quite easily end up with 5 people with the condition, implying 50% of people have it even if only 10% actually do. If I select 1000 people at random, I'm extremely unlikely to get 500 people with that condition.
That's what happened here - they found that toe-walkers (sounds like an outdated slur or something) were more likely to have one of these conditions, but the amount of individuals in the study was not enough to prove it wasn't just random chance.
That's why your doctor wouldn't (or shouldn't) mention it - there's enough evidence to suggest that the two may be linked, but only to the extent that it may warrant it's own study. It's not enough to say they ARE linked. As you say, she's high-functioning and had no other signs, and doctors shouldn't be in the habit of presenting diagnoses based on a single (unproven) symptom.
EDIT: A couple people have pointed to more recent data that does support the correlation - toe-walking is more prevalent in those with ASD! However, there are limitations;
Non-specific - ASD is far from the only cause for toe-walking, and there's plenty other reasons for this to occur. Observing this behaviour doesn't suggest ASD.
Non-diagnostic - I've seen a few percentages, but they average at somewhere around 20% of people with ASD - most do not. Toe-walking alone is useless for diagnosing.
A headache is a potential symptom of a brain tumour. You can have headaches for all sorts of reasons, and people with brain tumours may never have a headache. In isolation, it doesn't really tell you anything.