Question about your experience sensory overload - long

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Hi All-

I'm new here, so forgive me if i use improper words or terms.

I am a NT mom to a 10 y/o son who has been dx'd AS by a pdoc (who is himself an aspie) and a ped neurologist but had a neuro psychologist rule out AS and say it is "just" bipolar, social anxiety and executive dysfunction. Grrr - So, I'm trying to figure stuff out on my own to see who's perspective makes the most sense.

My question is mostly about sensory &/or emotional overload causing meltdowns and your awareness of your discomfort.

My DS started having violent meltdowns about 1 year ago, prior to that he had always had tantrums, but not violent and for about a year prior to the violence, he would have shutdowns, becoming non-responsive. These usually take place when he's in a frustrating or anxiety provoking situation or one that is loud &/or chaotic. After he has had a meltdown he will say he doesn't know why. I will give a couple of examples:

The waterpark - If you ask DS if this is a good place, he will say yes, lets go! However, after a few hours of the noise and chaos he will have a melt down. When asked why, he won't know. At no point does he seem to know that the stimulation is bothering him - I am just connecting the experiences.

The school bus - DS had a sub driver who asked him to get off at the wrong stop. He couldsn't speak or respond, he just sat there for 1/2 hour while the driver called for help. He finally figured out that the bus was to drive DS home. and they did. DS had a major meltdown that night, it was like he couldn't escape the anxiety but he doesn't know that, nor would he say he was melting down because of the bus.

He has a verbal IQ of 130, so he's super bright. there are no cognative delays - but his connecting with his discomfort or emotions seems really limited.

Was/is this your experience? Do you know what's bothering you in the moment? If you do, did you when you were a kid?

He also has this odd sensory thing that no one seems to have seen before - when DS is super startled he will immediatly trigger a meltdown. For instance when he was a toddler, peek a boo from behind the door would cause him to cry for 1/2 hour. Now, an accidental bonk to the head from a playmate will cause him to immediately, violently react. Have you ever heard of this?

The neuro psych is calling his meltdowns, quick temper and putting them in the mood disorder category however the more I watch and pay attention the more AS makes sense.

His special interests vary and you can get him off topic so the neuropsych doesn't think it's "special" enough. However, before AS was even on my radar, I was asking the pdoc for help and wanting to know if it was OCD or what, because it was driving me crazy (pdoc said no, OCD is to avoid anxiety, "special interest" gives pleasure, very different) . He does rock when stressed or deep in video games, but not all the time.

He is affectionate with my husband and I but recoiled when I asked him how he would feel if a teacher hugged him. He makes eye contact, I believe to see if he has you attention.

I would really appreciate any adult AS perspective about what it was like for you when you were a kid dealing with emotions and sensory stuff. THANKS!! !

sometimes autistics have trouble expressing or recognizing what they are feeling, so they're not always going to know when a meltdown will happen.

Yes. My sister does it. If she gets hurt she throws a fit over it. I'm guessing because it was unexpected, more of a not liking surprises or changes problem.

It sounds like he is still trying to figure out how to react to his emotions. Since he does not recognize what emotions are building up, or how to react to them, he ends up with a meltdown.

He does not know when he needs to take a quiet shady break at the water park, and probably resists you efforts to head off a meltdown. Time his activity with breaks for refreshment and rest so he can associate his need with the corrective action.

The problem with the bus and the bonk to the head are both meltdowns. When things don't fit our logic, we get stuck mentally. We have to learn what options are acceptable reactions to new situations. Stories, movies, and discussions about "what if?" are ways to help figure them out.

Based on your description, he is NOT bipolar(AKA MANIC/DEPRESSIVE. It refers to people that may swing between VERY depressed and downright eccentric), does NOT have social anxiety(It has triggers that deal with non social areas), or executive dysfunction. HECK, his symptoms sound like SPD which IS a comorbid of PDD disorders.



He sounds like I do here! The aggression may be because he entered puberty at just about the same time, because of added stress at that time, or simply because he is worn down.



He probably thought about the IDEA of going. With all the people, noise, etc... it is a problem waiting to happen. Maybe you can get him registered as a special needs kid, and go the back way. That will cut out a LOT of the garbage, and allow him to have fun.

BTW in such a case there are MANY reasons, and no answer really fits your question. He may just figure "What's the use?".



Adults tend to not believe kids, so I can see how he is frustrated.



Maybe he has tried to tell you, but you haven't listened. That's how it was with ME.



YEP, I was the SAME way even to not responding in some circumstances. And I always knew what was wrong. Maybe not where it came from, but what it was. How can you explain that you can't stand lights, scents, sound that everyone else seems to be happy with?



I HAVE heard of that, but that is a way in which we differ.



Well, the symptom mix looks like a PDD, and the high verbal DOES sound like AS(a type of PDD).



I was the SAME way! At his age I was interested in electronics, machinery, aviation, chemistry, and a couple other things. I could speak a long time about them, and people COULD get me off of them, especially when I was as old as he is.



OH, I HATE hugs from most people.



Much the same! I also HATE loud noises, or noises at certain frequencies. I HATE neon lights! I used to HATE fluorescent lights, but now generally hate them as they go bad. I usually spot them going bad LONG before others and it may take MONTHS for others to be bothered enough to replace them. I LOVE hot showers, but HATE the heat. People have been SHOCKED that I can keep my hands under hot water so long to clean items. I LOVE the cold air. People have been shocked when I have walked blocks in 22F weather without a coat.

Thanks so much for yhe replies - I really appreciate hearing from anyone who has more experience than I!

I didn't include the examples that are social related or would illustrate the exec dysfunction. I think that both of those cause him terrible frustration which also triggers meltdowns.

What sound bipolar to me, is that when he's not in a meltdown, he doesn't have big mood swings - it's mostly triggered meltdowns.

Most meds make it worse, not better so that is another concern about the bipolar dx, as most of the bipolar meds would likely help.

Here's the thing, it is entirely possible that he has both (that's what the neurologist thinks). The Neurologist feels that until we properly address his AS stuff, we will never get anything under control.

Anyway, what I mostly need to understand is at that age, what did you know? What were you aware of (as far as feelings go)? AND the big one, how and when did meltdowns come under some semblance of control. I am terrified that he is going to end up in jail at some point.

BTW - I do listen to him, very much. He wishes I would stop asking stuff.

Describe the special interests more. Does he know when someone is getting bored or does he keep talking about it? How off-topic? Does it sound like normal meandering, or does it have cloudcuckoolander tendencies?

You kept him at the waterpark for "a few hours" and expected him not to melt down?! A few hours?! For a ten-year-old? Alright, here's what would be happening in my head if that were me (it often is). It's a fun place, let's go! Yay, rides! (Whatever a waterpark has, I've never been to one.) *enjoys self* Meanwhile, as he enjoys himself, he's exerting effort to keep himself under control. Don't stim, be nice. Walk around, getting tired. Go on rides, if there are rides, which may well be thrilling, which will be stressing his ability to deal with stress. (It's good stress, but it's stress.) There's noise and chaos, and it's bad, but not as bad as the good parts are good... at first. After a couple of hours, he wants DIFFERENT stimulation (bored), he wants to go home, he's been exposed to the noise and chaos for a long time and they're starting to grate... even the good parts take their toll. And it may be that he doesn't want to admit to this because he thinks if you know it can cause him a meltdown he'll never get to go back, but he probably likes it (or maybe he doesn't, and is trying to seem normal, that's always a possibility), and your best bet may be to shorten your visits. Is there a warning sign for when a meltdown is imminent? Leave when you see it. If not, try a slightly shorter visit until he stops leaving in tears.

It's hard to determine what is and isn't a meltdown. This is the best way I can think of to explain it:
1. Generally, it won't be under control. (If you've learned to let steam out before you explode, however, or toward the end or beginning of one, you might be able to control it.)
2. It can be triggered by anything upsetting or stressful, including not getting your way. However, a meltdown is not a tool for getting your way. (I would say "if you wouldn't have it except for the presence of other people, it's not a meltdown" except that that can be a stressor. If the presence of other people causes it by being too much to process, it's a meltdown. If the presence of other people causes it because it's meant for their benefit, it's not a meltdown.)
3. It's not usually something you want. I almost always try to keep it from happening, and it's not pleasant while it's happening. (But you might be glad it's happening because then it'll be over, and I at least am often happy afterward.)

So a meltdown... I used to not be able to think straight while having them, but now I can think and reason as normal. What that means is that it sucks even more because as it happens I'm thinking abotu how I look, what I'm doing to the people around me...

I tried getting violent intentionally once, because the alternative is to turn it inward, and let it eat at you. "As long as it doesn't leave a bruise (and I don't bruise easily), hitting myself is better than hitting someone else," that's my train of thought... didn't help, though. (Videogames do, and also taught me social skills and fine motor.)

Oh, yeah. "This isn't going right," you think, "I have to not let it go wrong." But you also can't really bring yourself to explain to someone else that they should change their behavior. So instead you half pitch a fit and half have a meltdown.

The same kind of affection feels physically different with different people doing it. Mom kisses differently from Dad. If the teacher hasn't earned absolute and utter trust, there might be an issue with fear of restraint and violation of boundaries. Some people are just...

But also, those teachers might hate him and be mistreating him. It's pretty common, and if that's the case, no wonder he doesn't like hugs. They can do so without telling you, and if he doesn't really understand what's happening...

But his special interests vary how, exactly?

(This post took a long time to compose, sorry if it's redundant or irrelevant or asks questions that are already answered.)

I quit being a crybaby when I hit puberty. After that I stuffed my feelings down until I could meltdown in privacy.

Not only do autistic people frequently have trouble reading our bodies signals, but we usually grow up in a society that pressures us to ignore our body sensations (overload, pain, etc.) when they don't conform to other people's ideas about what should be happening. He probably doesn't know what overload is, or doesn't know how to detect and respond to it. Add to that the fact that overload can itself cause shutdowns in the ability to process bodily sensations such as overload. (Which is not anxiety and is not emotional, although it can cause emotions. It's a buildup of too many stimuli.)

At this point in my life (nearing 21) I can pretty much identify what is causing/will cause an overload to my system, though in the moment my mind still goes blank. I does take effort for me to stop and try and focus on what, exactly is causing this reaction. When I was a kid this was even more difficult. Most times I was not at all aware of why I was having a problem, or if I was I could not express this to other people. I guess it's something that with time and practice has gotten better.

I have never bee violent myself, but I do know of many that have. The new violence could be any number of things. It could just be natural, it could be related to his age or he may be getting more frustrated with not knowing how to control himself.

About the water park, sometimes even good situations or sensations can build up and add to an overload situation. Too much excitement or "good" stimulation can lead to problems just like the "bad". I would definitely try to limit water park time to at least half of what it has been if he has problems like this often. It may be that the entire thing is just too much. He may want to go for the fun aspect but not be considering the screaming kids, the sun in his eyes, etc. and once these things take their toll it may be too late to tell what has set him off.

Good luck!

Thanks -

The varying special interests...... For the last year it was WWE wrestling (UGH!), but then there is internet research & shopping and certain video games. The video games will pass once he beats it or gets intersted in another. He can rotate through these things, usually the target of the internet shopping research loses his interest once he obtains the target. In the midst of that he can have passing interests like certain bands. He will learn about the members, memorize lyrics to favorite songs, but then the focus will ususally shift.

It's always a bummer for me when he's on a research/shopping mission, because his desires are usually out of my price range OR for something that will need focus longer than when you hit buy now. (for instance the hamster and the bunny). Learned the lesson with the hamster, not doing it with a bunny!

He does not know when someone has lost intrerest in conversation.

He wants friends and for friends to come over, but if they aren't engaging in one of his interests, he will go into another room so he can focus on what he wants. He now has one friend. A neighbor who has been hios playmate since before he was 1. He used to have more but his difficulty playing with others and meltdowns have eliminated most friends. This causes him distress. He is not content to be alone all the time.

I really don't think he knows he's getting overloaded nor what thing caused it. Sometimes he will know what the thing that pushed him over the edge is. (for instance at the waterpark and older kid pushed him in line). He does not try to avoid stimming and he doesn't do it that much. We did go to a loud movie over the weekend which he really liked but wanted to leave at one point. We talked about the noise bothering him, and he was able to tell me that it wasn't the noise itself, but that it was the noise in a small space. We had been talking about it because he likes some loud noise, for instance a rock concert. (his dad is in the music business, he has been coing to concerts since in utero). BTW - At rock concerts if the noise is bothering him, he can always escape it backstage where it's quiet. He also plays the drums (the shopping for them was all engrossing, playing them did not become a special interest . After a $1,000 investment, I was hoping that they would

Mudboy - your comment made me think, maybe that's where the violence is coming from, not wanting to be a crybaby.

Here's what's interesting about the idea of the melt down would happen alone or with people.....He seeks me out to do it around me. For instance he didn't meltdown (just shut down) on the bus, he remained agitated all afternoon once he got home. Once I got home, he melted down. It feels to me like a static charge that is buiilding until released. Sometimes something will happen that will trigger the immediate release, but sometimes, he can hold on. (that is usually when we see the rocking)

I am just trying to figure out how to help him. The violent melting down will really cause big grief if he doesn't figure it out. I am worried that if the neuro psych recommends a school for ED kids that has the variety of mental illnesses such as Bipolar and ODD and CD, DS's situation will get worse not better. He is a good kid and doesn't hurt on purpose. I certainly don't want him to pick up the ODD and CD stuff. Bipolar, which he may have, doesn't bother me because there's not intentional misconduct.

It should not be much longer before he tries to hide his meltdowns from you too.

I know that a combination of factors will affect me negatively so I try my best to avoid them. Yes, I know them now but I don't think I did as a kid. My mom says I threw tantrums all the time but she didn't know what I was throwing them for either.

As a general rule, the main things which bother me are:

HEAT
LARGE CROWDS
BEING IN ENCLOSED PLACES
TOO MUCH NOISE

Perhaps you should just avoid things like these with your son. Or make sure he has coping mechanisms like sunglasses, in-ear headphones or earplugs. And don't spend long amounts of time in overwhelming places.

I did the same thing with my mom, and I STILL do it now even though I'm 30! I think I learned in adolescence that I couldn't throw fits and be b*tchy towards people in public, but my mom was my mom so she would deal with it. I certainly didn't wanna irritate my friends or complain in front of THEM. It is much easier to let it out in front of family who you know already love and accept you.

Last edited by Kiseki on 19 Jul 2010, 11:55 am, edited 1 time in total.