My family often felt as if they were walking on eggshells when I was younger, as I could erupt with anger at any second. During these episodes, I lost control of my rational thinking and actions which would cause me to hit, kick, scream, shout, insult, push, and lash out in any way possible. I was overwhelmed with unbridled fury.
None of this was within my control, and none of it was a choice. Yet, people looked down on me and treated me like I was a ‘bad kid’. I do understand this though, when a child is aggressive or acts in an antagonizing and ‘disrespectful;’ manner, you are usually likely to assume it is bad behavior. However, I hope to change this. I wish for people to think differently, with more compassion.
The problem was that the psychiatrist who diagnosed my rage attacks as ‘calculated and deliberate behavior’ did not think to consider the fact that behavior is often communication. There was something deeper going on which needed to be addressed, but instead of looking into it they just distorted my view of myself to think of myself negatively. This led to a steep decline in my self-esteem. I have seen schoolwork from my childhood which asked me the question “How do you think your family view you?”. I responded with one word…”naughty.” I also have a psychological assessment from when I was younger which highlights that I thought I was a mean person. It is heartbreaking to think of a child viewing themselves in this way, for something they have no control over.
The doctor did not consider this. When I tried to tell them that I had no control over these rages, he shut me down and refused to let me speak. I told him that he was unkind, he treated that like it was a good thing.
Instead of making negative assumptions about who I am as a person, and making me view myself in that way, the doctor should have delved deeper to find the root cause and triggers. Years later I now know that my rages, defiance, and meltdowns were influenced by a variety of factors. These included food dye sensitivity, personality changes and involuntary rages likely from brain inflammation relating to PANS, Autistic meltdowns, and tic suppression causing me to explode with these rages.
Rather than looking into these, the doctors tried to use a one size fits all approach of reward charts. After months of having stickers taken off of my chart every time I had an uncontrollable rage attack, unsurprisingly there was no change… I was still having rage attacks. Threats also didn’t work, they made it worse. The psychiatrist threatened to put me into a care home due to my rage attacks, and this made them worse as it spiked my anxiety. I already had separation anxiety traits which caused me to be unable to sleep in a room on my own, so this was terrifying to me. Punishment (which in my opinion was very harsh and unfair) also had no effect, because my rages were neurological storms. I do just want to say that my parents were not at fault, they were always trying to do what was best for me. Like most people, they thought that they needed to do what the doctor was telling them to do. Unfortunately though, the doctors gave bad advice.
After a rage attack, people often feel very shameful and remorseful (even if they are too embarrassed to show it!) This shows that a person KNOWS that what they do in a rage attack or meltdown is seen as inappropriate and can be harmful, but they can’t control it. Due to this, discipline to try and make someone see that their rages are unacceptable doesn’t make sense… as they know they are unacceptable and don’t want to be having them. Rather than punishing a person and expecting them to control the uncontrollable, I feel that it is more important to prevent the rage attacks by identifying, addressing, and eliminating the underlying triggers where possible. Remember that the underlying triggers can be biological factors, such as food sensitivities and underlying infections in some cases.
This would not only reduce a persons rage attacks and / or meltdowns, but will also prevent them from having to heal from the low self-esteem that comes as the result of being told they are a ‘bad person’!
I do not fully blame the doctors for what they did, because they were just using the conventional psychological interventions for challenging behavior. The problem is that parenting strategies for neurotypical children will likely not work as well for neurodivergent children or children with an inflammatory brain condition… because their brain works differently. As well as this, rage attacks and meltdowns are not a choice. No one would CHOOSE to endure something like that, but the traditional approaches they were using were implying that the “behavior” is within the persons control and is intentional. As well as this, the conventional psychological interventions do not consider that there may be an organic biological trigger for the “behavior”, such as neuroinflammation or the immune system reacting incorrectly to certain foods or pathogens. Sadly, conventional medicine doesn’t put much emphasis on food sensitivities impacting the brain, so some people see an environmental physician or functional medicine doctor to try and find the potential underlying biochemical root triggers.
I feel that if a child is under the care of mental health services or a neurologist and experiences difficulties such as OCD, tics, ADHD, anxiety, communication difficulties, psychosis, depression, or sensory processing issues then it makes more sense to first assume that the anger or so called “bad behavior” (which it isn’t really) is related to these difficulties in some way and look into this more rather than gaslighting the child into believing negative things about themselves. Also, if a child feels remorseful after a meltdown or rage attack, gets emotional about what happened afterward, struggles to remember how it started, tells you that they cannot control it or has extremely dilated pupils during it, then it may be safer to assume it is brain based and help calm the child afterwards and empathetically talk to them about what happened whilst knowing that they likely did not mean it. This could save a lot of self-esteem issues from occurring and allows the child to see that someone cares about them and doesn’t just want to punish them for struggling.
I’m lucky in many ways, as although I had a very hard time with mental health services regarding meltdowns, rage attacks, and tics, I know other people who have had it much worse.
I have empathy for my parents in the situation that we were in. It wasn’t just me who was made to doubt myself and think I was “bad”. My parents were constantly told that they need to “set stronger boundaries”, or “discipline me better. Many hints were made that made them feel like “bad parents”. My parents were not bad parents, the doctors just did not fully understand. They also assumed that my rages and meltdowns must be related to my parents in some way. They thought that my parents must have been doing something wrong as I only ever had rage attacks / meltdowns at home and not at school. The truth however was just that I could mask and subconsciously suppress my struggles and symptoms in school, meaning that it would all come out once I got home as I knew that at home I would likely be judged less at home than at school. A child should never be judged negatively for having rage attacks or meltdowns.
I believe that the judgement from doctors took a toll on my parents self-esteem as well. They were made to attend a family counselling session as the doctors thought that they couldn’t parent me properly. The doctors were wrong, my parents always knew better than them. Instead of being blamed and shamed, I feel that parents of children who have rage attacks and meltdowns should be encouraged to meet their child with compassion and do their own research. I feel that they should be reassured that their child's meltdowns and rage attacks are likely nothing to do with their parenting.
The mental health service only destroyed mine and my families self-esteem in their attempts to help with my rages and meltdowns. Sadly I know this experience is all too familiar with families who have an Autistic child or a child with PANS/BGE, Tourette’s, ADHD, or another neurological difference. The best advice I could give to doctors is to listen to the parents and patient and believe them.
You may think that more often than not, kids are probably being “badly behaved” so why not just assume it is that? If you think this then it may be helpful to remind you of how common certain neurodivergent conditions are. ADHD is thought to affect 2-5% of children in the UK, Tourette Syndrome (which can cause rage attacks) affects around 1 in 100 people, 1 in 44 people are said to be Autistic (according to the CDC website), and PANS/PANDAS/BGE is thought to affect 1 in 200 people (According to the PANDAS network.) Even if a child isn’t neurodivergent, there is no reason not to assume that their behavior isn’t a form of communication too. It always helps to find the root. Neurodivergent conditions are not akin to "bad behavior", but unfortunately certain traits are often misinterpreted this way.
Section 2: Talking About My Rage Triggers:
Tic Suppression: When I forced myself not to tic (intentionally or unintentionally) the premonitory urge accumulated. This lead to an intolerable sense of pressure throughout my body, it would explode out as irritability and rage attacks. It hurts my heart when I hear of children being advised to hold in tics, as it has caused me and my friends so much harm.
Food Dye Sensitivity: Ever since I was a baby I would scream after drinking dyed juice. In my toddler years I would need to be pinned down as I became violent a few hours after consuming dyed foods and beverages. My parents cut out food dyes from my diet and I didn’t have rages for years after this until I developed overnight onset severe tic-related OCD. My rages got dramatically worse once I started consuming food dyes again at age 9, and would trigger them off severely 6 hours after consumption. My extended family members would give me food dyes, but they could never get a way with it as my parents knew if I had food dye or not by whether I had a rage attack once I got home or not. It was not just artificial dyes which I was (and still am) sensitive to. I had a huge sensitivity to a natural due called Annatto as well. This was one of the dyes which impacted me the worst. A 2007 study in the UK proved that several food dyes can trigger hyperactivity in children, they called these dyes the “Southampton Six”. 1 There have also been a multitude of news reports on this topic, showing that many families have seen how food dyes can impact their children's demeanor and behavior. 2,3,4.
Likely PANS: PANS stands for Pediatric Acute Onset Neuropsychiatric Syndrome. It usually has an autoimmune origin and is often triggered by infections (not just Strep), but came have other triggers too. PANS symptoms often stem from inflammation in the brain. Symptoms can include OCD, restrictive eating, tics, seizures, psychosis, reduced muscle tone, handwriting decline, sleep disturbances, coordination changes, decline in math ability, anxiety, mood alterations, ADHD-like traits, Autistic traits, rage attacks, irritability, dilated pupils, personality changes, brain fog, joint pain, and more. Some people only have a few symptoms. The antagonizing demeanor, personality change and defiance I experienced was likely a result of this. My personality and demeanor changed quickly and drastically, but was labelled as "bad behavior." It was so much more than that.
I feel that the assumption of me being "badly behaved" meant that some of my medical and mental health needs were not taken as seriously as they should have been.
References: (I do not own or take any credit for any of the content in these links.)
Southampton (2007). Hyperactivity in children and food additives. [Online]. Available at: https://www.southampton.ac.uk/news/2007/09/hyperactivity-in-children-and-food-additives.page [Accessed 1 Nov 2020].
NBC News. (2021). Is there a connection between artificial food dye and kids’ behavior? [online] Available at: https://www.nbcnews.com/news/us-news/artificial-food-dyes-may-cause-behavior-problems-bill-aims-warn-parent-rcna5989?fbclid=IwAR3Qc9kYz0pIM5itzW7d0FsqDMy0rwy3s7iVn7S3xt8dUfzecmHV6p4-CO8 [Accessed 2 May 2022].
ABC11 (2019). Is your kid sensitive to food with red dye? Additives removed from products in Europe remain in U.S. [online] www.youtube.com. Available at: https://youtu.be/n4jB73Qnd08 [Accessed 2 May 2022].
WPBF 25 News (2011). Food Dye Affects Children’s Behaviors. [online] www.youtube.com. Available at: https://youtu.be/z9p8tD-Rd34 [Accessed 2 May 2022].
Disclaimer: I am NOT a medical professional, this is NOT to be used as a substitute for diagnosis or treatment from a qualified physician, this is to be used for educational purposes only. For medical advice, please see a medical practitioner. I do NOT claim to treat, cure or mitigate any condition.