when we were going into the meeting to get the results of my son’s ASD/ADHD screening, i fully expected them to say “ADHD, but no autism.” instead, the first thing out of the doctor’s mouth was, “Well, he definitely has autism . . .”
i was genuinely surprised. my immediate thought was, “No, he doesn’t have autism. He’s just the same way I was, and I don’t have au- . . . I- . . . Oh shit.”
fast forward a few years and kiddo is doing fine. it’s a mild case. the biggest challenge has been behavioral issues at school, which have been mostly resolved through painstaking cooperation with teachers/administration.
i’m also skeptical about various aspects of autism diagnosis/treatment, though i agree that the term definitely describes a real and significant thing. what throws me is the sheer range of severity. the difference in symptoms/impairment between mild and severe cases is so significant that i sometimes find it difficult to see them as the same condition.
anyway, it sounds to me like you guys are going to be fine too. you’re both obviously tuned in as parents, and the cowboy boots thing is a minor stroke of genius. i wonder how one would get that into clinical trials.
This is where I fall. I don’t know if what my son “has” is best described as autism versus something else but it probably does help him to get help with his speech development. Did anyone ever give you that book about the dad trying to help his kid with autism but a few pages in you realize his kid never really had it?
I don't really understand the whole "autism" diagnosis. How can a kid that can really focus down on something or be a bit what we used to call "quirky" be called the same thing as kids who have no language and can't care for themselves be the same thing? I don't like the spectrum either because aren't we all on that spectrum?
I love that u love playing with your son. Bless your sweet, loving heart. My dad was like that, he would invest in our silly games- cutting a giant deep chest freezer box into a miniature house for my younger brother and I to play in. Playful dads rocks!!
If you’re going to go full cowboy boots you may as well teach him to two-step. By the time he’s into his dating years this could be a SERIOUS advantage. Young men who can dance always get the prettiest girls!
They already tried it... kid just kept trying to toe walk so hard in them that he wore them down until he could...they might try again with heavier duty ones.
Hermit tents look fantastic, as a kid I had to make do with shimmying into the small spaces between walls etc, I might even have learned to crawl or sit on the floor if I'd had a hermit tent
If it’s available (and he loves horses) look into therapeutic riding or hippotherapy if it’s near you. Horses can do incredible things to help in all sorts of ways!
The cowboy boots are a wonderful idea! Another helpful thing that I've seen: My friend's daughter always walked on her toes as well, and she started taking her roller skating a couple times a week.
FYI tons of people in my family walk on their tip toes as children. We've heard it is because we have shortened achilles tendons. Either way, it's a weird trademark of our family that we have large calf muscles. I have large calf muscles and never walked on my tip toes but my mom has large calves and as an adult will sometimes walk around on her toes. No one is autistic in our family also.
I'm a late-diagnosed autistic adult and want to throw in my two cents on a few points.
The "spectrum" is a confusing way of thinking about autism, as are the levels now assigned. I'm a level 1, or what was formerly called Asperger's. But that's according to my clinical diagnosis which looked at my overall functioning, capabilities, and achievements at that time. I had a series of unfortunate events yesterday that led to dissociation/derealization from sensory overload and I temporarily went nonverbal. My baseline may be 1, but it fluctuates as life circumstances fluctuate. I'm not always "high functioning" ("low needs" is the term typically used by autistic adults).
Instead of a linear spectrum, think of a color wheel with traits being more or less pronounced depending on many variables.
One of the variables is intellectual ability, which is another point of frequent misunderstanding. Autistic people are spiky as a demographic, so you see extremes of intelligence on either end. Many of the world's greatest innovators, artists, and thinkers exhibited consistent behavior and inner experiences that would probably get them a diagnosis today (Newton, Kant, Beethoven, Tesla...it's a long list). But autistic people can experience an intellectual disability in addition to autism.
In the wider culture, we see a big ol' mix of people who are all supposed to have this "Autism Spectrum Disorder" and it doesn't make sense because all of this context is missing. There's a popular saying now that if you've met one autistic person, you've met one autistic person. It's accurate. We're people with a different brain wiring, and my wiring is going to have a lot more in common with another autistic person than a neurotypical person. That's kinda it.
I also want to address the idea that we're all on the spectrum because this gets said a lot by well-meaning people. To an extent, it's true. But it's because autistic traits are human traits dialed up to an 11+. I think this is part of why diagnosis of mild presentation can feel tricky to parents, especially if the parents exhibit similar traits (and there's always the distinct possibility of one or both parents being autistic as well).
This bit tends to affect females more than males, but it's good to know just in case. I was diagnosed with several chronic illnesses over the past couple of years after they got debilitating. Having an autism diagnosis helped immensely with this because they are frequently comorbid. These also tie into stuff like GI problems and severe anxiety associated with autism:
- Hypermobile Ehlers-Danlos Syndrome
- Mast Cell Activation Disorder
- Postural Orthostatic Tachycardia Syndrome
These are all, of course, poorly understood. And finding doctors that have even heard of these conditions is challenging. Dysautonomia is one of the umbrellas that these fall under. Basically, my autonomic nervous system doesn't work properly. And that sucks. You can probably see how it fits as a package with autism. Brain wired weird. 🫠
Finally, if you're unfamiliar with it, read up on the double empathy problem. I also highly recommend the (late and great) Steve Silberman's NeuroTribes and Eric Garcia's We're Not Broken.
I want to start with: people should be able to get help with whatever they need help with. And people matter and their specific hurts matter. Ik sorry to hear about whatever happened yesterday.
I want my son to get whatever he needs that helps him grow up and also to learn to use himself well in service to himself if that makes sense. It took me a long while to figure out how to use what I was naturally inclined to do for my own benefit. I want to do whatever I can to help him learn the same. And I want that for all kids, really.
I guess the part that bumps me is when people recommend stuff like a pediatric chiropractor or something of that nature. There’s just no way that’s real. So I feel the labeling causes us to not see things if we were consolidating around some of the spikes. That’s most of my gripe. I think it also makes people see a vaccine link that’s just over broad diagnosis.
I’m not sure we cluster autism appropriately when treatments are discussed and when I ask these questions our pediatrician just gets a very nervous look.
when we were going into the meeting to get the results of my son’s ASD/ADHD screening, i fully expected them to say “ADHD, but no autism.” instead, the first thing out of the doctor’s mouth was, “Well, he definitely has autism . . .”
i was genuinely surprised. my immediate thought was, “No, he doesn’t have autism. He’s just the same way I was, and I don’t have au- . . . I- . . . Oh shit.”
fast forward a few years and kiddo is doing fine. it’s a mild case. the biggest challenge has been behavioral issues at school, which have been mostly resolved through painstaking cooperation with teachers/administration.
i’m also skeptical about various aspects of autism diagnosis/treatment, though i agree that the term definitely describes a real and significant thing. what throws me is the sheer range of severity. the difference in symptoms/impairment between mild and severe cases is so significant that i sometimes find it difficult to see them as the same condition.
anyway, it sounds to me like you guys are going to be fine too. you’re both obviously tuned in as parents, and the cowboy boots thing is a minor stroke of genius. i wonder how one would get that into clinical trials.
This is where I fall. I don’t know if what my son “has” is best described as autism versus something else but it probably does help him to get help with his speech development. Did anyone ever give you that book about the dad trying to help his kid with autism but a few pages in you realize his kid never really had it?
it has not been recommended to me. do you remember the author/title, and is there value in reading it?
It just annoyed me a lot so if you enjoy that feeling I would say give it a read.
on second thought, pass. i barely have time for the books i do want to read.
Horse here, can confirm
I don't really understand the whole "autism" diagnosis. How can a kid that can really focus down on something or be a bit what we used to call "quirky" be called the same thing as kids who have no language and can't care for themselves be the same thing? I don't like the spectrum either because aren't we all on that spectrum?
Insurance billing rules is the answer
Everything for human kittens these days is medicalized.
I love that u love playing with your son. Bless your sweet, loving heart. My dad was like that, he would invest in our silly games- cutting a giant deep chest freezer box into a miniature house for my younger brother and I to play in. Playful dads rocks!!
It’s the most fun I have all day.
If you’re going to go full cowboy boots you may as well teach him to two-step. By the time he’s into his dating years this could be a SERIOUS advantage. Young men who can dance always get the prettiest girls!
This is on the list. We need to be able to communicate better first.
A friend's kid toe walks - I'm going to suggest this to them, thanks!
Let me know if they take you up on it!
They already tried it... kid just kept trying to toe walk so hard in them that he wore them down until he could...they might try again with heavier duty ones.
Hermit tents look fantastic, as a kid I had to make do with shimmying into the small spaces between walls etc, I might even have learned to crawl or sit on the floor if I'd had a hermit tent
I want one for myself to be clear. But they are weird.
1 Corinthians 13:13 RSV
[13] So faith, hope, love abide, these three; but the greatest of these is love.
//Looks up at the sky
I agree!
If it’s available (and he loves horses) look into therapeutic riding or hippotherapy if it’s near you. Horses can do incredible things to help in all sorts of ways!
He had a very moving experience with a horse at the county fair last year. I need to get him another horse experience.
The cowboy boots are a wonderful idea! Another helpful thing that I've seen: My friend's daughter always walked on her toes as well, and she started taking her roller skating a couple times a week.
I need to try this out next!
This is such a sweet essay. The things we do for our kids never cease to amaze me!
I work with kids with autism and love this. Thank you for the smile!
Let me know if it works for anyone!
will do!
You are a good dad. You’re leaving a golden legacy to your kids. What a privilege to be a father.
FYI tons of people in my family walk on their tip toes as children. We've heard it is because we have shortened achilles tendons. Either way, it's a weird trademark of our family that we have large calf muscles. I have large calf muscles and never walked on my tip toes but my mom has large calves and as an adult will sometimes walk around on her toes. No one is autistic in our family also.
He is the first so breaking new territory
He will be on team HaveCalves!
Both niece and nephews did this and 2/3 had to have surgery
They needed cowboy boots
I'm a late-diagnosed autistic adult and want to throw in my two cents on a few points.
The "spectrum" is a confusing way of thinking about autism, as are the levels now assigned. I'm a level 1, or what was formerly called Asperger's. But that's according to my clinical diagnosis which looked at my overall functioning, capabilities, and achievements at that time. I had a series of unfortunate events yesterday that led to dissociation/derealization from sensory overload and I temporarily went nonverbal. My baseline may be 1, but it fluctuates as life circumstances fluctuate. I'm not always "high functioning" ("low needs" is the term typically used by autistic adults).
Instead of a linear spectrum, think of a color wheel with traits being more or less pronounced depending on many variables.
One of the variables is intellectual ability, which is another point of frequent misunderstanding. Autistic people are spiky as a demographic, so you see extremes of intelligence on either end. Many of the world's greatest innovators, artists, and thinkers exhibited consistent behavior and inner experiences that would probably get them a diagnosis today (Newton, Kant, Beethoven, Tesla...it's a long list). But autistic people can experience an intellectual disability in addition to autism.
In the wider culture, we see a big ol' mix of people who are all supposed to have this "Autism Spectrum Disorder" and it doesn't make sense because all of this context is missing. There's a popular saying now that if you've met one autistic person, you've met one autistic person. It's accurate. We're people with a different brain wiring, and my wiring is going to have a lot more in common with another autistic person than a neurotypical person. That's kinda it.
I also want to address the idea that we're all on the spectrum because this gets said a lot by well-meaning people. To an extent, it's true. But it's because autistic traits are human traits dialed up to an 11+. I think this is part of why diagnosis of mild presentation can feel tricky to parents, especially if the parents exhibit similar traits (and there's always the distinct possibility of one or both parents being autistic as well).
This bit tends to affect females more than males, but it's good to know just in case. I was diagnosed with several chronic illnesses over the past couple of years after they got debilitating. Having an autism diagnosis helped immensely with this because they are frequently comorbid. These also tie into stuff like GI problems and severe anxiety associated with autism:
- Hypermobile Ehlers-Danlos Syndrome
- Mast Cell Activation Disorder
- Postural Orthostatic Tachycardia Syndrome
These are all, of course, poorly understood. And finding doctors that have even heard of these conditions is challenging. Dysautonomia is one of the umbrellas that these fall under. Basically, my autonomic nervous system doesn't work properly. And that sucks. You can probably see how it fits as a package with autism. Brain wired weird. 🫠
Finally, if you're unfamiliar with it, read up on the double empathy problem. I also highly recommend the (late and great) Steve Silberman's NeuroTribes and Eric Garcia's We're Not Broken.
I want to start with: people should be able to get help with whatever they need help with. And people matter and their specific hurts matter. Ik sorry to hear about whatever happened yesterday.
I want my son to get whatever he needs that helps him grow up and also to learn to use himself well in service to himself if that makes sense. It took me a long while to figure out how to use what I was naturally inclined to do for my own benefit. I want to do whatever I can to help him learn the same. And I want that for all kids, really.
I guess the part that bumps me is when people recommend stuff like a pediatric chiropractor or something of that nature. There’s just no way that’s real. So I feel the labeling causes us to not see things if we were consolidating around some of the spikes. That’s most of my gripe. I think it also makes people see a vaccine link that’s just over broad diagnosis.
Cool idea with the cowboy boots. The mention of probiotic drops reminded me that I recently stumbled on some research suggesting ASD is strongly correlated to IBS and related issues. I'd never made the connection, looks like there's plenty of other stuff to keep an eye out for as well https://www.cam.ac.uk/research/news/autistic-individuals-have-increased-risk-of-chronic-physical-health-conditions-across-the-whole-body
I’m not sure we cluster autism appropriately when treatments are discussed and when I ask these questions our pediatrician just gets a very nervous look.