Idiopathic ‘toe-walking’ and Me


Toe walking refers to a condition where a person walks on their toes without putting much weight on the heel or any other part of the foot. Toe walking in toddlers is common. These children usually adopt a normal walking pattern as they grow older. If a child continues to walk on their toes past the age of three, they should be evaluated by a doctor.” – Wikipedia

Walking on my toes, is one of the most personal topics for me, that no one ever talks to me about.

I still do it, maybe not as often as I used to but especially when I am stressed, in bare feet or concentrating. I definitely do it unconsciously at times where I am probably not aware at all – it still affects my gait and the way I move in general even if you cannot visually see the toe walking. On top of that I also have hammer toe. And as a result of walking this way I also have Retrocalcaneal Bursitis in my right ankle, that I need to treat but still unsure how because I have a calcification build up also that gets aggravated by walking/running.

But this isn’t really the real reason why this is a personal topic as much as those are all great reasons for it to be personal. What makes this truly personal is that I was bullied for this, every day of my school life. And I used to have leg cramps and get reprimanded for “not walking on my heels”. People would stare – always starring at me, and because I was often especially as a child actively and subconsciously walking on my toes, bouncing and hopping around, lively little girl – none of these red flagged my neuropsychiatric care. I had physiotherapy instead.

It was all on me, they all basically said, we can’t make her not do it, she has to actively not do it.

I don’t control this thing – it is as deep rooted part of me as anything else, I have tried to “learn how to walk again” so many times, in order to correct this. Thousands of dollars spent talking about this thing especially as an adult sounds so humiliating to describe.

I walk on my toes and I look stupid, help.

I cannot tell you the names and descriptions of myself and my toe walking I have heard that are on echo repeat in my head at my every self reflection. On top of a mask for my ADHD and probable Autism, is like my hardest mask of all. An exhausting one, that I didn’t know I had but definitely had growing up – the proactive thinking about self, being made to be very self aware I was different from others around me since I can remember.

I don’t ever not remember walking like this. And the complications it has had on my body as an adult. I still don’t even know who to see to discuss this actual issue – and is this something covered by insurance, like I was born this way. If my toe walking is linked to a possible Autism diagnosis that I haven’t had and no one correlated my mental health to my physical health this whole time. It worries me, that is a troubling thought process I have been navigating which hits hard and hurts.

Especially after almost a decade of working through my ADHD diagnosis. Learning about RSD was also a big one – knowing a lot of things like this that happened to me has exacerbated that so much – I am unsure how I would feel if someone did just casually bring it up “so what up about the toe walking, what’s with that Jenn?”. No one talks to me about it – it’s like this silent thing, like how you imagine having some apparent deformity pointed out to you like you don’t already know.. so everyone tip toes around the subject because they don’t know what to say.

I need to document this though, that the correlation was missed even to me, even when I was told just a few short years ago of that’s like an “autistic thing” – I think the language people use when they say stuff like that kept me ignorant about these correlations – I feel cheated in a lot of ways, misunderstood my whole life – I wonder though, has everyone around me known and my mask is only to delude myself and trick myself into thinking I am fitting in. Those things are not symptomatic of my Autism or my ADHD, those are integral parts of who I am. Like how the toe walking has shaped so many of my life experiences.

It’s no ones fault I wasn’t sheltered from these things. I accept my way of walking. When I was about 6 years old, ‘Genesis’ the band, released a song called “I cant dance” and I think there has always since been this journey of self acceptance. I was OK being different if I knew I wasn’t like the people who starred at me, and the people who called me names and put me down and othered me.

The leg cramps have been a real thing in my life. And now for the life of me I cannot do a squat. And I have a persisting injury in my right ankle for majority of 12 years. It flares up and comes and goes but visually the bursa is swollen and it creates extra problems because it is swollen – not because of what was causing the swelling. Pushing off the ground, going up stairs and walking up hills is a major issue, and imagine I have done 3 marathons with this ankle.. I haven’t let it stop me and maybe the actual problem is I do not drive, I do not and never have had a drivers license. I just walk everywhere. I love it. It’s a place for my hyperactivity to go, it regulates my anxiety and stimulation too. So I live this life of doing a thing _a lot_ that actually doesn’t help my recovery.

The genetic hammer toe I have is where my big toe is shorter than the one next to it. So my feet roll out in an angle when I walk that has attributed to the aggravation of all these things. Eventually, and maybe it is too late, I could have arthritis in my hips and legs later in life. But I am actively doing more work on my walking issues – but I think having a autism diagnosis would greatly help with my ability to understand and get treated for this before it’s too late. If only I could make phone calls….

Learning that the idopathic toe walking and Autism is potentially related in myself truly is big news on top of everything else, it does give me a sense of hope that I can get treatment in a way that it’s partly funded somehow too, because of all this, it does impact my ability to do certain types of work, especially when I was doing physio I would have quite a few sore days couple that with my mental health and it was pretty exhausting keeping that up all the time even when I have pushed through.

The other reason why I have not been able to come into the information I needed regarding this is because there isn’t that much out there – especially for adults. All articles about toe walking relate to children, and not much about it for them being a grown adult and still walking this way. It makes me feel like an uncomfortable unicorn at 5’9″ and bopping around unconsciously until I notice the stares.. I hopefully will write more on this in the future, I am looking at treatment for the calcification build up through my physio but that will be after the whole Covid-19 lockdown whenever that will end.

Idiopathic toe-walking in Autism:
(I do not equally share the views or language of these websites but they do have a general outline)

https://www.healthline.com/health/toe-walking
https://www.spectrumnews.org/news/clinical-research-toe-walking-in-toddlers-signals-autism/
https://www.scientificamerican.com/article/autism-related-movement-problems-persist-until-adulthood/
https://lerpediatrics.com/pediatric-feature/understanding-the-odd-gait-of-autism/


Published by Jenn has ADHD

Jennifer Parker, New Zealand. ADHD Advocate and Peer. jennhasadhd.com

%d bloggers like this: