Anonymous
Post 02/02/2024 17:45     Subject: Extreme reactions to insinuating weakness
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:OP, what you're talking about is "interoception" and it can absolutely go along with autism. Maybe she's getting mad because she can't understand what you're saying because she doesn't perceive it.


Edited to say, you're describing a lifetime of poor interoception. Have you seen an OT for these issues?


Omg. Op here and you just completely blew my mind with this information. I had never heard of this but it explains SO much. The confusion, the inability to explain any bodily sensations, the over sensitivity to certain things and under sensitivity to other things.

Thank you, this is life-changing.


You're very welcome! I really hope it helps. I was an adult when I started to wrap my head around this, and I was genuinely stunned to learn that other people can feel their own heartbeats etc.

Don't be afraid to try various OTs and PTs until you find one who truly gets it. You can ask for a phone consult with just you, rather than taking the time to bring your DD in. If they can't give you a few examples of what they'd try for improving interoception, they're not a match for you.


Thanks for the advice. Some things I feel like we do already- the routines are helpful, and she uses timers.

I do worry how she will do in 6yrs when she goes away to college. Will she remember to eat? Will she dress appropriately for the weather? Will she go to sleep on her own? Will she burn herself out or spend 3 days straight working on something because no one is there to remind her to eat and sleep and shower? If she gets sick, will she realize it?

What was your experience like going away from home or he first time?


Well, a lot of college students are bad about those things! Yes, I did fail at self-care many times in college. I've passed out from hunger or dehydration a few times, and I had some roommate conflict around hygiene and sleep habits. My interoception is good enough that I can tell when I have a fever, and visually I can see if I have a rash or bruise or other physical injury, so I've always handled things like that pretty well.

I think it depends on whether your daughter will have the skills at that age to manage things better, and whether she'll be motivated by social reasons or whatever other reasons. I eventually learned that I have to eat regularly to avoid passing out, and I don't like passing out because it leads to embarrassment and jeopardized me having a drivers license. In college I was told I couldn't work in a certain lab anymore if I continued to pass out. So that was enough motivation for me to make sure to eat. Try to figure out what will motivate your daughter if eating is a problem.

I think you need to ask yourself what goals are a priority in the near term, and I suspect going away to college is not one of them!
Anonymous
Post 02/02/2024 17:23     Subject: Re:Extreme reactions to insinuating weakness
Just an idea since you mentioned trouble getting her into the therapists office: Could you go in with her for a joint family appointment the first few times? Then talk to the therapist when your daughter isn’t around and have the therapist suggest meeting separately with the daughter?
Anonymous
Post 02/02/2024 17:03     Subject: Extreme reactions to insinuating weakness
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:OP, what you're talking about is "interoception" and it can absolutely go along with autism. Maybe she's getting mad because she can't understand what you're saying because she doesn't perceive it.


Edited to say, you're describing a lifetime of poor interoception. Have you seen an OT for these issues?


Omg. Op here and you just completely blew my mind with this information. I had never heard of this but it explains SO much. The confusion, the inability to explain any bodily sensations, the over sensitivity to certain things and under sensitivity to other things.

Thank you, this is life-changing.


You're very welcome! I really hope it helps. I was an adult when I started to wrap my head around this, and I was genuinely stunned to learn that other people can feel their own heartbeats etc.

Don't be afraid to try various OTs and PTs until you find one who truly gets it. You can ask for a phone consult with just you, rather than taking the time to bring your DD in. If they can't give you a few examples of what they'd try for improving interoception, they're not a match for you.


Thanks for the advice. Some things I feel like we do already- the routines are helpful, and she uses timers.

I do worry how she will do in 6yrs when she goes away to college. Will she remember to eat? Will she dress appropriately for the weather? Will she go to sleep on her own? Will she burn herself out or spend 3 days straight working on something because no one is there to remind her to eat and sleep and shower? If she gets sick, will she realize it?

What was your experience like going away from home or he first time?
Anonymous
Post 02/02/2024 16:57     Subject: Re:Extreme reactions to insinuating weakness
My son has similar issues. He absolutely must be normal and not weak. We started seeing them around 11-12. I wish we had done more earlier, and we have put him through some stresses that we wouldn't have if we had done that. I would jump on it now. He is 13 and not in a great place right now.
Anonymous
Post 02/02/2024 16:34     Subject: Extreme reactions to insinuating weakness
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:OP, what you're talking about is "interoception" and it can absolutely go along with autism. Maybe she's getting mad because she can't understand what you're saying because she doesn't perceive it.


Edited to say, you're describing a lifetime of poor interoception. Have you seen an OT for these issues?


Omg. Op here and you just completely blew my mind with this information. I had never heard of this but it explains SO much. The confusion, the inability to explain any bodily sensations, the over sensitivity to certain things and under sensitivity to other things.

Thank you, this is life-changing.


You're very welcome! I really hope it helps. I was an adult when I started to wrap my head around this, and I was genuinely stunned to learn that other people can feel their own heartbeats etc.

Don't be afraid to try various OTs and PTs until you find one who truly gets it. You can ask for a phone consult with just you, rather than taking the time to bring your DD in. If they can't give you a few examples of what they'd try for improving interoception, they're not a match for you.
Anonymous
Post 02/02/2024 16:27     Subject: Extreme reactions to insinuating weakness
Anonymous wrote:
Anonymous wrote:OP, what you're talking about is "interoception" and it can absolutely go along with autism. Maybe she's getting mad because she can't understand what you're saying because she doesn't perceive it.


Edited to say, you're describing a lifetime of poor interoception. Have you seen an OT for these issues?


Omg. Op here and you just completely blew my mind with this information. I had never heard of this but it explains SO much. The confusion, the inability to explain any bodily sensations, the over sensitivity to certain things and under sensitivity to other things.

Thank you, this is life-changing.
Anonymous
Post 02/01/2024 19:37     Subject: Extreme reactions to insinuating weakness
Sounds like ASD to me, too. Very similar to my DS of a similar age with ASD. For him, it is an emotional regulation challenge, maybe mixed with impulse control issues. There is also Rejective Sensitive Dysphoria, which is fairly common in kids with this profile (ADHD or ASD). I seem some of that in our kid. He also very much hates not being in control or being told what to do.

The only thing that works for us is to back off. Don't make the comments if you can catch yourself in time. If you do, empathize and back off - "Oh, you seem upset that I mentioned your cold symptoms. I'm sorry - I forgot that you don't like me to point those out. It's okay to be upset," and then give her space.

For us, it gets worse if you try to correct the behavior or make a big deal of it because it seems connected with shame and anxiety in the first place.

I do think therapy could help, but you would want to tiptoe carefully around this due to the shame/anxiety issue. Maybe consult a therapist on your own for parental support in dealing with it and see if that helps in the short-run.
Anonymous
Post 02/01/2024 18:41     Subject: Extreme reactions to insinuating weakness
Anonymous wrote:
Anonymous wrote:https://neurodivergentinsights.com/blog/autism-interoception



I wanted to say thank you to whomever posted this link.

My DD is very underweight and by working with a nutritionist and OT and feeding therapist, we realized she didnt recognize what hunger was (the feeling of hunger). She is still underweight but once we told her that feeling was hunger she wouldn’t stay up all night feeling hungry, she could get something to eat and then sleep.

I didn’t know there was a name for this. And what the relationship was to neurodiversity.


You're so welcome! I'm an adult with poor interoception and have had to learn to manage it-- it's more common that people think!
Anonymous
Post 02/01/2024 18:36     Subject: Extreme reactions to insinuating weakness
Anonymous wrote:https://neurodivergentinsights.com/blog/autism-interoception



I wanted to say thank you to whomever posted this link.

My DD is very underweight and by working with a nutritionist and OT and feeding therapist, we realized she didnt recognize what hunger was (the feeling of hunger). She is still underweight but once we told her that feeling was hunger she wouldn’t stay up all night feeling hungry, she could get something to eat and then sleep.

I didn’t know there was a name for this. And what the relationship was to neurodiversity.
Anonymous
Post 02/01/2024 17:35     Subject: Extreme reactions to insinuating weakness
https://neurodivergentinsights.com/blog/autism-interoception

Anonymous
Post 02/01/2024 17:32     Subject: Re:Extreme reactions to insinuating weakness
You need to phrase the therapy as YOUR weakness - your lack of knowing how to parent her and YOU needing help.
Anonymous
Post 02/01/2024 17:27     Subject: Extreme reactions to insinuating weakness
Interroception issues go along with autism. Get the book “Is This Autism.” Getting a book is not leaping to conclusions. It’s educating yourself about the possibilities. Differences in pain perception go along with ASD. My 11 year old is completely the opposite - she is hypersensitive to very little ding or scratch. Nevertheless it’s part of the profile.
Anonymous
Post 02/01/2024 17:27     Subject: Re:Extreme reactions to insinuating weakness
Anonymous wrote:OP here. I don't think it's OCD. I think it could either be some kind of anxiety, ADHD, or mild ASD. But it really doesn't matter.

So far, there are no issues, other than what I described. No issues at school. No friend issues. I don't think the friend or school situations are ideal, but they are fine. She excels in school. But absolutely despises it. She likes her 3 friends and they like her, but they hardly spend any time together, and she has zero interest in developing any new friendships or meeting new people.

For the most part, she is very pleasant to be around and we have a good relationship. But this is a weird trigger and I guess I just want to understand it better.

Maybe some of it is just moodiness?

I will talk about it after, and she admits she doesn't mean any of it. She says she just exaggerates her feelings. I also found she seems incapable of interpreting her body's signals. When she had Covid recently, she was unable to describe her symptoms. I told her that it's going to be important for her to learn how to describe her symptoms so that if something was going on with her, we would know how to help. She's unable to give us any information about whether she has a headache, or has an upset stomach, or anything.

She also does not experience hunger or fatigue. And an unusual reaction to pain. If someone inflicts pain on her, it's just pure anger. But other than that, it's mostly just a kind of curious confusion, or non-reaction when she gets injured. She has never once cried from getting injured, even as a baby.


I would definitely get a neuropsych eval done.
Anonymous
Post 02/01/2024 16:47     Subject: Extreme reactions to insinuating weakness
Obviously nobody here can diagnose your kid but a lot of what you wrote sounds like autism. It is not normal, or hormonal, for a 12 year old to be growling like an animal or threatening violence because someone said she has the sniffles. If this is the only issue you are having it seems like you can avoid the trigger, but if it's showing up in other ways that bother or limit her, there might be meds or therapy that could help. maybe as she gets older she will be interested in that.
Anonymous
Post 02/01/2024 16:33     Subject: Extreme reactions to insinuating weakness
Anonymous wrote:OP, what you're talking about is "interoception" and it can absolutely go along with autism. Maybe she's getting mad because she can't understand what you're saying because she doesn't perceive it.


Edited to say, you're describing a lifetime of poor interoception. Have you seen an OT for these issues?