Autism Rage And How You Can Help
by Anthonette Desire, MD
Originally posted Sept. 3rd, 2020 on Adventures in Medicine, Autism, and So Much More
Sounds easy enough. 5 steps to serenity. Right up until you are faced with it. This trance-like destruction of person, property, and feelings, akin to a full-blown seizure event with a predilection for harm, does not have a 5 step. And you're left thinking ... what the bleep.
He's only 8, You wonder: Do I show them my bruises or hide his? You think: He's so handsome and sweet, will I be able to convince others that that mark was self-inflicted? But the warrior in you shook it off. Those thoughts have no place and so you continue your search for a solution. You hunt for that magic, that quick therapeutic modality, that medication / herbal concoction, or that Facebook advice. You think: Something has to give!
So, I share my knowledge with you. The knowledge of another warrior autism mom, battling the rage of the cutest little man imaginable. A knowledge that remains in search of more knowledge because the fix is neither magical nor quick but it feels so within reach.
First, let's take a tour into what my little man's rage looks like? I'll describe the rage in the stages observed. (Feel free to cry, rejoice, and get mad with me.)
The Grunt and Pace: Though not all grunts result in rage, all rage starts with the grunt and may follow with the pace. The grunt ... that low throat throttle ghhrrr with a lost look of "I can't find something" followed by the back and forth speedwalking. You see it. And you know that this is where you stop everything that you are doing. This is your window to address a concern.
The Jumping Stim: Very soon after "the grunt and pace" will come "the jumping stim". This is when we have moved past pacing and on to jumping and have added stimming. Our stims usually involve something held in one hand that is used to hit the palm of the other hand, repeatedly and with rapid succession. Here you are presented with another window to deescalate the situation.
The Gravitation: This is your sign to get gone or use your best bag of tricks. You are now the person of interest. Verbal frustration and loss of words now want to communicate via physical expression. The gravitation is really a misnomer as it is rarely gradual or inching. Before you know it, your fingers are wires for the bending and your gut is being head-butted.
The Head Banging: This stage is super concerning and yet so promising. It indicates, to me, that he has learned that attacking is not acceptable, but his impulse to physically express his frustration is overcoming all sensibilities. At this point, you may have succeeded in avoiding the gravitation but have unwittingly initiated the next level. Our headbanging can be described as him using both hands to forcefully and painfully hit both of his ears or bang on the top of his head. Other parents have shared worse experiences requiring helmet protection. By this stage, his jumping and headbanging are concurrent with teeth-grinding and the twisting of any object in hand. (Hide your fingers). But believe it or not, this is still him holding back. You still have a window to deescalate the rage.
The Grab and Tear/Grab and Throw is our full-blown melt-down. The grunting, teeth-grinding, gravitating, head-ramming, hand-twisting, finger-bending, shirt ripping rage-trance is on! If it wasn't so dangerous to all involved, it would be a wonder to behold. And if you managed to escape the gravitation and grab, the TV didn't. Neither did the cup on the table, your favorite headband, the phone, that lovely floral arrangement, or anything nearby. It's exhausting. And to me too.
The Sadness: The volcano has erupted. The lava has flown and there is nothing left but an empty hole. Tearful sadness sets in. He has given up. His concern that started it all is still present but he wasn't able to tell what it was. All he can do now ... all I can do now ... is to cry. And to hold each other.
I'm secretly thankful that the rage isn't purposefully meant to harm me while I suppress the worry that it might become. I'm conflicted with the fact that I hugged him through the sadness and remain unsure if I've reinforced a harmful behavior. So again, I too search the world for answers.
All phases described may occur in seconds. Knowing the signs are key and essential in deescalating or controlling the degree of rage. As his parents, we have trialed many modes of parenting ranging from authoritarian to full push-overs. Learning that his current rage comes from a source of frustration (Verbal, applied limitations, overstimulation) we can parent by expressing to him an understanding. This has worked the best for us. By simply using his words for him when he cannot, he gets the sense that we get it. For example: "You can't get onto Youtube? You want loud ear bleep and I won't let you. That WiFi is broken ... again (It's not. We've blocked him and I'm not telling him that!) That is so frustrating. I'd be mad too. Let's try it again and see if it works (it won't). Uh, I guess we will have to do something else. Good grief. Why doesn't anything work around here? I completely understand boohoo. You'll be okay though. It’s all fine. Oh look, a stick."
Fortunately, we have many expert opinions on the topic and where one advice doesn't work, there are 50 others. Many timeless, useful, and effective tips exist - and will work in one phase but not another. I'm careful that I don't use a cannon to kill a mosquito because sometimes, it's the simple tips compounded by consistency that work best.
Here are some expert ideas shared with me that I pass onto you. They are meant to prevent the onset of rage.
1) Determine the antecedent.
Figure out what was happening just before the grunt began. That can really assist you in knowing what set him off. This way, when you are using his words for him, you're talking about the right thing. You're talking about "om nom" and not "math circus" and can help deescalate the situation. It can also assist you in behavior modification. For instance: You notice that doing homework is associated with rage. You can sift through your bag of tricks for avoidance behaviors and use his words for him again. Another example: " Noly, are you thinking 'Oh my goodness. Homework again? Staying smart is so hard. I don't understand it!' well, I still feel the same way buddy but it's gotta get done. Lets do one page and then take a break"
- Minimizing known environmental triggers. Again, these are known by learning the antecedents. If the fan blowing doesn't bother him, let it blow. But maybe it's the tumbling of the dryer or the noise from the landscaper. We noticed early on that sensitivity to some sounds drove him mad and ear mufflers were a game-changer. Not to mention, it protected his ears during the headbanging stage.
2) Assist communication.
Being brilliant and not being able to display that ought to drive anyone mad. Wanting to get something from the other room but not being able to express it and always being told to sit down can make one flip a lid. So double down, the best way that you can, in creating or obtaining a form of communication between yourselves. We have a simple trick in our home. It is my knuckles. In my defense, I could never find that spacer strip with the square boxes given to me to use by the speech therapist. She realized though, that Noly has words but his mind speed is so fast that 10 words are said at once and sound like "earkjsdgjg". So she gave me the strip to help slow him down to saying one word at a time. I said genius idea! I will use that spacer strip and have him point to each box and say the next word that he wants to say. Our sentences then sounded like pauses between words (I.....want.....juice..... please). Yes! Full sentences! He is talking! But it worked only while using that strip that I could never find. I then figured that I always have my knuckles, so I transitioned the strip over to my knuckles and presto (Knuckles: Go ....to.....the .....car ) has helped minimize eloping. Simple things: a way to to communicate.
3) Remove food irritants from the diet.
A big topic in our world is the brain-gut axis. Look it up. Trial and error is a thing. And I say, try. If it makes a difference for you, go you! I personally would love to add some supplements to his diet, but alas ... he doesn't want it and it's already a fight to eat, bathe, brush teeth, take your medicine and avoid a rage.
4) Engage in enjoyed activities.
I am guilty of being busy. Or of wanting him only in my world. But knowing what he enjoys doing, even if I hate it, might help me in becoming his safe person. And that gravitation may become a good thing.
5) Providing functional training.
We often see this as meaning ABA, speech, OT/PT, and other critically important training. But going to the supermarket, with him, with the sole purpose of buying one item, ie his favorite food offers so much exposure and experience. For instance: "Okay, Nolan, for us to go into the store and get the cookie, we both have to wear a mask. Let me fix it. Let's go get the cookie" So we navigate to the cookie aisle, through the candy aisle, with the reinforcement that we are here to get cookies. Then once cookies are in hand, we cannot open it. We have to pay for it first. So off to the cashier we go so that we can pay for it and bag it. It's purchased now but we cannot eat it in the store. We are in the car now, but we have to wait to get home.
Yes, these are painful steps that we take for granted. (I've had my fair share of supermarket meltdowns at the register. Let's not talk about it). But during this process, he has learned to find, carry, pay for, bag, and wait to eat his cookies. He has learned to function in the world he lives in.
All these modalities have proven efficacious for life in general!
But what they don't do is cure autism and what they don't do is treat the active rage.
Despite all you do, You still have your precious person, painfully conscious of his or her autism-related brilliance, yet mentally trapped by the same. How infuriating.
Trying to understand my son, I often imagine myself in his shoe. Then laugh at my stupidity as if I even have a clue. But let's presume the following scenario as food for thought: I just had an intensely emotional argument with someone I cannot stand. I felt all the feelings and understood exactly what I wanted to say but my expressed words did not reflect what I felt. So instead of raising my argument, I raised my voice. That night and over the subsequent days, I mentally relived the fight, came up with really good comebacks, and had 50 additional fights in my head. Being aware of what I was doing was not enough to shut off my brain - so now I'm just mad with an internal dialog on repeat. Needless to say, I'm a "pleasure" to be around. Suddenly, I bumped into that person. I may have thought to grunt, gravitate and ram her with my head. But I chose to scream in the bathroom.
Folks, like my son, aren't able to process this mixed bag of feelings very well. For many, control comes from screaming, physically manipulating something, or being completely disinhibited and without internal regulation.
In children, we focus on teaching and correcting, but adults with autism who have not learned the art of self-regulation will become heavily medicated, institutionalized, or harmed by law enforcement.
I feel for my little man. I feel for your little one. And I feel for your fully grown bundle of joy.
So what do we do? We find therapeutics that address 1)Reasons for frustration, 2)anticipated state of mind, 3)current state of mind, and 4)overall health and wellness.
These therapeutics span the gamut and are based mainly on the needs of the autistic person. To quote Dr Steven Shore "If you’ve met one person with autism, you’ve met one person with autism.” You can help simply by educating yourself. Reading more. Learning more about the autistic brain. And being there. Letting him know that you're trying to understand.
Here are 3 useful reads:
About the Author
Anthonette Desire, M.D., is an internal medicine trained physician currently in practice and serves on the Medical Board of St. Charles Hospital. She uses her experiences as a doctor and Autism Mother to educate and support parents via her writings, website (Adventures in Medicine, Autism and So Much More) and upcoming book.