Now Reading: Rage, Autism & Epilepsy: Why There’s Not Much Progress Around Here

Rage, Autism & Epilepsy: Why There’s Not Much Progress Around Here

Rage, Autism & Epilepsy: Why There's Not Much Progress Around Here

The king is going thru a mini “spring of rage” ๐Ÿ™

Back in 2011 when I first started the blog I wrote often about his “summer of rage”. Well, he’s made a bit of a triumphant return to his raging days…and he’s taking it out most on his teachers, therapists, and aides at his school…
I’ve written before that he normally has a rough last couple of months of each school year where his bad behaviors escalate… but this time it seems a little bit different, it seems like he can’t control it…

He’ll be doing fine and then it’s like somebody flips a switch and he just becomes a bit of a wacko… biting, kicking, spitting usually with a smile on his face and very often with a maniacal laugh which makes it all a bit more infuriating…

Sometimes it seems that his eyes become dilated before these rage episodes**

Unfortunately, there’s really not much we can do about all this. And this is a case where managing his epilepsy trumps managing his autism.

As I mentioned a week back or so, he’s still having one BIG, SCARY seizure a week, so we have to focus most of our energies there. We had a neurologist appointment 2 weeks back and they increased one of his meds. And maybe that increase is causing the rages?
But not having seizures is more important that all of it. I wrote a post way back in 2012 called “I’ll Take Aggression Over Seizures Any Day” and I still feel that way. ย  It sucks that we have to have one or the other… but sometimes it feels like that is the case…

Again, we have no f$$king clue what’s causing the rages. Other times in the past, it was more obvious that he was hitting or biting to get out of doing something. However, as I hinted at earlier, with these ones recently it almost feels like he’s having an out of body experience. He’ll be cuddling with you one minute and then that switch will flip and he’ll hit you.

I think we just have to ride it out and hope that it’s just a phase and hope that his teachers, therapists, and aides remember the sweet boy they had for the first 7 months of the school year. Hopefully that buys him some good will. ๐Ÿ™‚

Seriously, I have no doubts his school staff can handle him and love him, but when he gets on one of his rages it can be tough so I’m worried for them a bit because he’s gotten a lot bigger and stronger over the past few months (thanks to peanut butter!) ๐Ÿ™‚

What really sucks about all this is that it prevents him from making any real progress at school (or at home)… and this has been the case for quite a few years now, but lately I’d say it’s mostly because of the Epilepsy.

Over the past few years his time at school has been filled with lots of sleeping due to seizures or seizure meds making him sleepy.

And now we are finally at a stretch where he is not napping as much at school, but instead he is raging.

And both sleep and raging prevent any significant “school work” from happening…

When he is sleeping he is obviously missing school work and the routine of the day… and when he is raging focus and attention to any tasks is difficult for him and they need 2 staff members on him for huge chunks of the day to protect the other kids.

So when I see the IEP Goals each year, and then I see how he barely met any of them, I know what to blame… Sleep and rages… There’s just not enough hours in the day sometimes when you’ve got sleep and/or rages to contend with…

And again, these rage episodes seem to happen more at school, and when he is not raging or sleeping he is himself and is pretty happy go lucky… but he still sleeps too much.
Anyway, that’s all I got. I just wanted to update you all on what is going on with his majesty because I’ve been re-posting a lot of old blog posts lately, but haven’t given you any new updates on the king…

That’s it. THE END

** = I hesitated to write that sentence about his pupils being dilated because I know I’m gonna get a ton of comments with explanations for what that means and I know some will scare the sh&t out of me. Just know that, of course, I’ve googled it and I know all of the things that it could mean. So please think before you comment about that and please don’t scare the sh&t out of me! ๐Ÿ™‚

Written by

Frank Campagna

Iโ€™m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call โ€œthe kingโ€ :-).

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18 People Replies to “Rage, Autism & Epilepsy: Why There’s Not Much Progress Around Here”

  1. Anonymous

    My son had seizures and has autism. He was put on Depakote. He had rages as it ramped up and if the dose is not equivalent from morning vs. night. Good Luck!

  2. Anonymous

    Lots of kids with autism have summertime raging, why don't you think about what changes in May/June and then you might find the answer. For many it is the effect of pollen allergy, very easy to test it just take your kid somewhere with no pollen and see if the raging stops. If it stops the raging then go see an allergest or read up on mast cells and histamine.

  3. Anonymous

    Why is no one considering severe Mitchondrial disorder? It is clear that most of our kids have this to some degree or another and Mito. is the cause for so many of these issues. Look up Dr. Richard Boles out of LA and Courtegen testing. Get it done!

  4. Hi! My son is 15 and an aspies. We went through a rough phase of teen hormones a while back that really had me worried. He has 100 lbs on me easy so I was unsure how I was going to handle him. Glad that's over, although it rears it's ugly head every so often. He's recently been prescribed an emotional support pet and that should help a lot. . I hope.
    Thanks for all your posts . . good to know I'm not alone out here.

  5. Hi! My son is 15 and an aspies. We went through a rough phase of teen hormones a while back that really had me worried. He has 100 lbs on me easy so I was unsure how I was going to handle him. Glad that's over, although it rears it's ugly head every so often. He's recently been prescribed an emotional support pet and that should help a lot. . I hope.
    Thanks for all your posts . . good to know I'm not alone out here.

  6. Anonymous

    Our son goes through this as well. We find it comes along with seizures. Someimes when he is about to have one, it seems to be a part of how he experiences the "aura". I can only guess that because he is experiencing someting profoundly frightening and it turns on his fight or flight response. I can tell you my kids don't have much flight, they're all fight. Which I admire, but as he's gotten bigger and stronger, it's getting harder and harder to manage. I had to literally corner him in a chair in the doctors office right before he had a seizure right in front of a lot of elderly patients. They were terrified, I was terrified and now I have bruises up and down my arms. Yesterday the same thing happened towards the end of a partial seizure, but this time he kept screaming, "hands to self!". Trying to stop himself from lashing out, I think. He's trying, he doesn't want to hit me. I can't imagine what is happening in his mind that makes him feel like hitting.

  7. I so appreciate your candor in your posts about "the king!" Kudos for recognizing the issues of late but for trumping it all with love and devotion first and foremost, and with respect for the school staff as well. Since my own son was a child of about twelve (they do grow up) I have wondered what changes puberty might effect in ASD students. It seemed to me as a mother then and an educator now that many things which work before puberty do not work during and after. Unfortunately, I have not done the research yet, but rather this is an observation. I am very glad to have found posts from the Autism Daddy, and I thank you for your candid insight and approach! Please keep up the excellent work!

  8. Anonymous

    Ativan has been a miracle for us this year, controlling both the seizures and rage. My head knows nothing last forever but for now my heart is happy. Everyone's chemistry is different so what works for one may not for another but thought I'd share. The school is actually going to move my baby back out of the TUB unit next year. Good luck with your "season"

    1. Anonymous

      We've been there. I wish I had an answer for you. Something we laugh about now is when I had bruises of hand prints all over my arms and it was super-hot out, so I was wearing a tank top outside while I did yard work. Somebody made a report that I might be being abused by my husband. About a half dozen cops came to the door and asked for a blonde woman who was in her 20's. My husband said "she's in her 40's" (LOL) I came downstairs eating my quart of Hagen Daaz, and asked, "Are you looking for me?". They oohed and ahhed about my bruises and said, "yes". I had to leave the house and explain the situation to the helpful gentlemen. I missed a perfect opportunity to extort my husband for that diamond anniversary ring I've had my eye on. I'm glad you share some of the less glamorous side of autism that some of us struggle with. It's no OK to call this "just a different way of thinking".

    2. Anonymous

      p.s. she also takes Risperdal with the Ativan, independently they didn't do the trick

  9. MrsScrappack

    I am a special education teacher at a school for children with ASD. We typically serve the most severely and profoundly affected students. I have always wanted to ask what it is like for a parent to hear that your child hits and hurts other people, staff and sometimes even other students. Do you get desensitized? I have a wide range of parents who will apologize profusely and get very upset every time they hear about their child being aggressive to anyone and then others who barely bat an eye. I mean no disrespect, I'm just trying to understand my families better. I am a parent but not a parent of a child with special needs. I love your page! I've been a big fan for many years!

    1. Anonymous

      I always feel terrible when I get reports like that but I've stopped apologizing profusely because I feel we are doing everything we can for my twins with ASD. They are in behavior therapy speech therapy, occupational therapy…we work with them whenever we can at home. I am not there at school to correct or redirect.. I feel that is up to the teachers. I cannot "speak to them about it" when they get home as it is long forgotten by that point. Of course I don't want my kids to hurt others but I'm not sure what more I can do. It's overwhelming for sure.

  10. Anonymous

    My son would have rages also, starting around puberty. While it was happening, he would have a very blank expression, as though "no one was home". It got really scary when he would attack me (his mom)and try to break my fingers. If I could get away from him and get outside, he would be calm in about 15-20 minutes. We found low dosages of Risperdal and Klonopin very helpful.

  11. Anonymous

    God bless Autism Daddy and your family!You provide so much info and insight and we are grateful.

  12. One of the kids I work with went through this over the Fall/Winter. Often targeted his mother, but sometimes it happened at school, too. It was heartbreaking to watch – he seemed so sad when the rage ended and he was "back." Like you, we had no idea what the triggers were, and nothing seemed to work to end it, so we tried to keep him safe and waited each rage out. Sometimes it seemed related to an interruption of an OCD behavior, but even that was/is hard to track accurately.

    Hoping this phase for the king ends soon and he's back to his sweet self!

    1. Hi Susan, I think you might be right about an interruption to and OCD behaviour. I was looking after my severely non verbal autistic grandson recently. He had a huge meltdown as my son would say, and this was after I said just make the bed don't change all the linen.

  13. Oh, how I love the rages. Here's to hoping the cycle ends when summer comes (and, it is funny you mention the eye dilation – it always is our "heads up and duck" sign when we know she is about to flip out. "The eyes.. the eyes….. everyone in the other room – the eyes are here."

  14. Sherree Gillenwater Austin

    May God continue to give you and your wife strength and endurance. Peace will come to The King when you least expect it. Keep the faith. None of this is easy on anyone, especially the one going through it. Love and prayers to you all.