ASD, ADHD and “Ragestorms”

[Anonymous]

Anonymous wrote:

Anonymous wrote:What is he eating? Eliminate everything processed, no added sugar.

OP here. This is admittedly a big part of the problem. He will only eat a few things with protein and typically won’t eat until he is absolutely famished. His mind is always racing it seems, so if he is not ready to eat he just won’t eat. I pack a lot of options in his school lunch but he will eat only a fraction of it and leave the rest untouched. But I really would love to get this better regulated because his mood does improve a bit after eating.

He’s starting puberty. Feed him more. He is hangry.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think one part of this, probably not the whole part but one part, is low blood sugar from the hunger. Lots of people get angry when their blood sugar drops, it sounds like that may be a trigger.

Second this. However, strongly disagree with the PP who said eliminate processed foods and sugar. When you're dealing with low-blood-sugar-induced meltdowns, ANY calories are good calories. (Note I am not talking about low blood sugar due to diabetes or other medical conditions!) I keep fun-sized snickers and reeses cups everywhere to hand over when I see these coming. (For us, it's important not to *ask* if they want it - just hand it over, unwrapped even, to make the eating of it as quick and painless as possible.) It is even better, however, if you can stave them off at the pass, but I understand firsthand how hard it is to get a kid like this to eat regularly. We dealt with a drop off the growth chart and worked with a nutritionist to bring him back up - and she was the one who encouraged me not to be afraid of sugar. She also pointed us to liquid options - homemade yogurt smoothies, chocolate milk with added protein, meal replacement shakes (Boost Plus and Bolthouse Farms are popular here).

Look for other triggers as well - some that we see a lot are too-quick transitions, being asked to stop in the middle of something, any type of disappointment (friend cancelled, game lost, bad grade, etc.). You can't always avoid them, but you can soften them if you see them coming. I find it helpful to think of their ability to handle things as like a cumulative balloon of stress/resilience - things build up over the course of a day (and other things can relieve some tension), but sometimes even something seemingly small can stretch you past the breaking point. And once they pass that point, they really do lose most of their control - their brains are in fight or flight mode, unable to reason . Sometimes they may not actually remember! We try really hard not to blame or punish for these moments. And as you begin to learn their stressors and how to reduce them, the frequency will drop off.

OP here. Yes, these are big-time triggers and we’re definitely getting better at navigating around them. Another one is having to repeat himself. He often doesn’t speak clearly, so if you didn’t hear him the first time you get one chance to ask him to repeat what he said. Ask a second time and he becomes irrationally angry.

[Anonymous]

This sounds so much like my son. I agree with all the above- food, possibly meds, and screens. We find screens are the biggest trigger for our son. No matter how good of a job we do transitioning- timer, warnings, etc. he still melts down. Also agree that some is he works so hard to keep it together at school and falls apart at home. Meds and less screen time (or really none during week) have been the biggest help for us. This week was hard with less routine and unfortunately we had to revert to more screen time. We also have done therapy and unstuck and on target and that has helped some. I do hope as he matures he will have a better handle on his emotion. Hang in there OP.

[Anonymous]

My son did CBT and would do the meditation app.

Changing his diet, no screen, good sleep habits helped a lot of things but not this.

He learned breathing exercises and meditation kept his base anxiety level lower

[Anonymous]

Well first I’d stop using words like ragestorm and gaslighting when thinking about your 8 year old’s behavior, and also stop worrying about him being a functioning adult just this minute. Read The Explosive Child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think one part of this, probably not the whole part but one part, is low blood sugar from the hunger. Lots of people get angry when their blood sugar drops, it sounds like that may be a trigger.

Second this. However, strongly disagree with the PP who said eliminate processed foods and sugar. When you're dealing with low-blood-sugar-induced meltdowns, ANY calories are good calories. (Note I am not talking about low blood sugar due to diabetes or other medical conditions!) I keep fun-sized snickers and reeses cups everywhere to hand over when I see these coming. (For us, it's important not to *ask* if they want it - just hand it over, unwrapped even, to make the eating of it as quick and painless as possible.) It is even better, however, if you can stave them off at the pass, but I understand firsthand how hard it is to get a kid like this to eat regularly. We dealt with a drop off the growth chart and worked with a nutritionist to bring him back up - and she was the one who encouraged me not to be afraid of sugar. She also pointed us to liquid options - homemade yogurt smoothies, chocolate milk with added protein, meal replacement shakes (Boost Plus and Bolthouse Farms are popular here).

Look for other triggers as well - some that we see a lot are too-quick transitions, being asked to stop in the middle of something, any type of disappointment (friend cancelled, game lost, bad grade, etc.). You can't always avoid them, but you can soften them if you see them coming. I find it helpful to think of their ability to handle things as like a cumulative balloon of stress/resilience - things build up over the course of a day (and other things can relieve some tension), but sometimes even something seemingly small can stretch you past the breaking point. And once they pass that point, they really do lose most of their control - their brains are in fight or flight mode, unable to reason . Sometimes they may not actually remember! We try really hard not to blame or punish for these moments. And as you begin to learn their stressors and how to reduce them, the frequency will drop off.

This. Along with meds. Meds aren't going to fix anything by themselves, but they'll make it possible to implement other strategies.

Honestly, though, while I'm sure this is incredibly difficult for you, the fact that he's keeping it together at school suggests he'll do fine as an adult.

[Anonymous]

Anonymous wrote:Well first I’d stop using words like ragestorm and gaslighting when thinking about your 8 year old’s behavior, and also stop worrying about him being a functioning adult just this minute. Read The Explosive Child.

Before attempting to offer advice to others, you should look at yourself to figure out why you come across as judgemental.

Ignore that poster, Op. I don't know why there are so many parents that come in the special needs forum despite not having kids with significant support needs.

[Anonymous]

Anonymous wrote:What is he eating? Eliminate everything processed, no added sugar.

+1 Finding out which foods triggered rage in one of my kids changed our lives. Try eliminating enzymes. They're in cheeses and baked goods but read the ingredients on everything. Made a HUGE difference in our lives. Good luck.

[Anonymous]

NP. I have found projecting too far into the future (DS will be a horrible adult) and attributing ill intent makes me more reactive, which makes everything worse. I get that when your child is having rage storms, it is incredibly incredibly hard and the stress really got to me. What helped our DS was guanfacine for ADHD emotional disregulation, reward charts for going X days not damaging stuff, possibly therapy (not sure how much it helped), lower family stress levels as pandemic isolation ended, changing schools for a better fit (sounds like it's not an issue for you), and trying to get DS's buy in on making changes (designing reward system, making a plan to avoid hangryness). Ross Greene's books were helpful.

[Anonymous]

Anonymous wrote:

Anonymous wrote:op can you describe these ragestorms more? What happens, what does he describe feeling, what does he do?

OP here. It usually goes like this: Something will trigger him, like a negative outcome in Minecraft, he will scream, we ask him if everything is okay because he seems upset, and that will lead to an even bigger meltdown. He often yells “I hate you!” in these moments. It is just so over the top it kind of blows my mind. My parents would have never allowed me to talk to them this way, and yet here we are absorbing it on an almost daily basis. I am totally consumed with fear that it just going to get worse and he will become a monstrous adult. I hope that someday his brain will flip a switch and he will figure out how to shut off the rage, but maybe that’s naive and medication is the only way out.

Crossing your fingers that this just works itself out is not a strategic approach to helping your son regulate. There’s a lot of space between doing nothing and overmedicating him, which is what I sense you fear. There are many good suggestions here. Meds can be a way to help him build coping strategies. Talk to your ped.

[Anonymous]

Some quick changes in the language you use could help change the dynamic. So many of our kids have big reactions to “stop” because they have heard it so much, etc. We use “pause” or “get to your pause point” because that is what you want them to do, stop for now vs. stop forever. It helps me to automatically use a less confrontational tone of voice just because of the sound of the words and having to think about what I’m saying.

[Anonymous]

Anonymous wrote:Well first I’d stop using words like ragestorm and gaslighting when thinking about your 8 year old’s behavior, and also stop worrying about him being a functioning adult just this minute. Read The Explosive Child.

I agree. Your word choices are throwing fuel in the fire. He’s an autistic 8 yo having a meltdown. Focus on learning tools so that you can help prevent and de-escalate these situations.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Well first I’d stop using words like ragestorm and gaslighting when thinking about your 8 year old’s behavior, and also stop worrying about him being a functioning adult just this minute. Read The Explosive Child.

I agree. Your word choices are throwing fuel in the fire. He’s an autistic 8 yo having a meltdown. Focus on learning tools so that you can help prevent and de-escalate these situations.

Totally agree. In my family's experience, word choice, tone, and body language (for example, not standing over my kid with my hands on my hips) make a real meaningful difference over time. Medication gives kids some space to lower anxiety levels and use tools, but the big game changer for us was parent coaching to support how we were communicating with our child.

[Anonymous]

Okay, deep breaths. It sounds like he is having trouble with emotional regulation. It does not sound like an emergency and something that is indicative of him failing as an adult and never being a well-adjusted human being. He's 8.

He sounds a lot like my kid when he was 9, only it was much worse than this and was starting to become physically scary. He also has AuDHD and was diagnosed with ODD at the time (due to the rages). I think it all goes together with executive function and emotional regulation and probably also (in our case) anxiety.

Part of what has helped us is to calm down and stop seeing it all as an emergency. Our own emotions were ramping things up more. Sometimes he may need to be given more space to cope - our DS tends to get overwhelmed when people try to help when he is stressed.

We did the Unstuck & On Target program, which helped a bit with flexibility and having some different ways to describe and talk about things, but in these moments, I don't think he is able to think rationally. You need to wait for a time later to have the rational discussion.

Ours also gaslights, and I also think sometimes it is a way to manage the discomfort with what he did. He cannot handle thinking of himself as "bad." Thus, it has helped us a lot to take our judgment. We work hard not to have any consequences or reactions tinged with shame or judgment in reaction to his behavior. He already knows it isn't appropriate. If he is gaslighting later, I would just let it go. Don't get into a battle about whether he did or didn't, but talk about how a person could handle situations like that (theoretically). You don't want to make that a power struggle.

A therapist may also help. It has helped for us. I would also look at whether there are increasing stressors at school. He might be saving up stress from there and exploding at home. Maybe more together time, more physical time, and more sports/physical activity would be good to look into.

I'm sort of "meh" on the food part. Yes, better eating is helpful, but sometimes it's hard to get kids like this to do that. Mine is very resistant and has sensory issues. I certainly don't think this is caused by food, as some PPs have said. It's part of the puzzle but not the full answer.

[Anonymous]

Anonymous wrote:YES to the poster that said “meds allowed us to work on everything else.” There is no magic med to fix it, but if u can get a med that helps enough, then your kiddo can work with u and a therapist on strategies.
After many meds made him nauseous my son ended up on low dose haloperidol for a little more than 3 years (kind of uncommon these days says our psychiatrist). Haloperidol allowed him to finally able to do the work of therapy and practicing strategies.
He’s now 13… on ADHD meds (Concerta) and anxiety meds (Zoloft). Things aren’t perfect but OMG it’s way better. He does things now like take a shower to calm down. On his own. It’s so so so so much better.
Haloperidol is what allowed him to access the strategies to help himself. And then we figured out his current meds while still on that low dose of haloperidol… and then we eventually removed it.

I'm glad that your child is doing better, but to other parents who may consider this: Haldol (Haloperidol) is a heavy duty anti-psychotic with terrible side-effects if used for a long period of time (permanent muscle movement). They rarely use it for psychotic disorders anymore because of the negative side effects.