Published on 12, July, 2020
Hello, I am Kory, a mother to an 11 year old daughter with ASD, diagnosed when she was 8 years old. I apologize in advance for how lengthy this post is.
Short issue - she seems to have become obsessed or controlling, or trying to be and has started to go into unexpected or triggered (or so it seems) violent aggressive rages where she destroys things and throws them, screams, yells strings of cuss words while crying loudly and banging on walls etc. Does anyone in here have any experience with this personally as an individual displaying the outbursts or a parent or caregiver at the receiving end. I am trying to understand her but she will not discuss anything about it, when asked she stares blankly at me like I am not speaking to her, but will then start talking about something a kid at school did that day.
She has always been quick to frustration and violent outbursts where she would throw anything within reach and hit herself in the head repeatedly, even if she was holding something, and bite her right forearm and leave complete teeth marks indented in her skin which would stay for a while. I discovered pretty quick she was not displaying these behaviors in school or daycare, where I learned she was masking pretty good most the time. So at home where she was comfortable she let down and her older brother (with ADHD and ODD diagnosis) would mess with her when he was bored bringing on full on autistic tantrum for hours where I would have to sit with her in a bear hug and try to keep her from destroying things, hurting herself or others.
Eventually I educated myself and started learning the signs and triggers and ways to help her and spot when she was about to have a meltdown and she started to have less frequent outbursts. I would try to not let her get too tired or hungry because that would add to it.
Her brother moved out about a year and a half ago and it was pretty peaceful and calm at home with rare full on outbursts or violent fits until about 8 months ago.
A bit of background - I have been dating a man for almost four years and we had a routine of him coming over one or two nights a week when I had my children for dinner and spend some time. She was always excited to answer the door and would be happy but didn't interact much or care to stay downstairs with us after dinner. She would do what was needed and shower, go to bed at her bedtime without much issue. On a side note, he never has stayed the night when my kids were here, they go to their fathers Wednesdays and every other weekend. We would spend more time during those times.
About 8 months ago she seems to have just flipped, and all of sudden without any sign or warning she felt any differently him coming over she answered the door one evening, immediately started to yell, cuss, violently throw anything she could at him and demand he leave her house. She takes it to the extreme where she will destroy anything close, put holes in the wall, throw anything near and will cry and scream and be aggressive continuously for consecutive hours. So far she has gone as long as 5 hours in that state.
That has happened about 6 times where he seems to be a trigger and she has escalated it to other things like when asking her to do her chores like empty the dishwasher or when she has been told no when she asks for something. She has gone into a fit of rage in retail store, in my vehicle while driving and has hit me and cussed and thrown things. She seems to try to make things look like I am doing something to her, she will get out in the cold with no coat on and then beat on the door or windows for me to let her in and she could get back in as they weren't locked and I would be trying to ignore the angry fit and just be casually looking at my phone etc.
I have had to call the police for assistance and she has been taken the emergency room where we are told there are no pediatric services and what is it I want from them. Where we live the county doesn't have crisis intervention or places for pediatrics. So basically have racked up $2000 bill for her to sleep and be talked down to by a psychiatrist thru a teledoc system. When i have spoken to her doctor or teachers/counselor at school to see if she has changed in her behaviors there a bit they all look at me like, poor overstressed mother, and tell me what I basically already would know that she wasn't displaying those behaviors there.
When she is asked why she abruptly changed she used to be non-verbal, now she will just say it is a secret or she doesn't like him but wont say why. She will not tell anyone else what she is doing or acknowledge how she is behaving to others and when we saw her neurologist and I asked her if she wanted to explain what has been going on or how she was feeling she said happily with a smile, "no you can tell her".
She displays aggression and harasses him when we see him at the gym and will watch us talk through the glass in the childcare area into the gym with a look of what I can only describe as a crazy jealous ex-lover or something of that nature. She has gotten increasingly more controlling, or has tried, and seemingly obsessed with who I talk to or if someone coming over, which she does not want.
This is obviously a strain on my relationship and a big worry on me for many reasons. I used to think something was happening to her or someone was doing something, then that moved on to did he do anything but was quickly ruled out because they haven't ever been alone together unless I went to the restroom, so then I worried was it on set symptoms of psychosis of some kind or schizophrenia as it presents in females about this time and she is in the second stage of puberty.
She started out not very social with other kids and she attended a pre-school part-time (after a referral from First Steps program) for children with physical and mental disabilities/challenges. We discovered she was behind cognitively by a year and a half and she would not engage at all with other children, not even parallel play.
Bit more background -
She was born with a genetic deletion, called interstitial microdeletion of the 5th chromosome, 2 & 3 genes. (since her birth we have learned she has 2nd/3rd degree AV blockage, non-compaction cardiomyopathy of the left ventricle and an unnamed rare SIDS like condition, (potential for a pacemaker at some point) learning disabilities, muscle strength & tone issues and the most recent ASD diagnosis). She displayed autistic symptoms early on and was fairly obvious but took me years to get the referral for an assessment which happened right at the onset of COVID but once things reopened we were the first to have it completed.
Thanks for this powerful description on the sickness of modern western society. I feel similarly about the culture in UK - its got a different flavour but equally brutal and uncaring with a ridiculous facade of politeness. I feel like really understanding autism requires a paradigm shift and a level of self reflection and scrutiny of widespread neurotypical ideology that many parents aren't ready to do. It's not just fixing difficult children its fighting against a degrading and ableist world with them and on their behalf.
I left the US. Predominately because there is an under current of Sadism and Domination in EVERYthing. In the cashier looking at your credit card and addressing you by your first name. In the police officer signalling traffic and demanding you go even though -you KNOW to continue moving forward. In the Polite command to "have a nice day". There is a subtle and non-stop wash of everyone trying to step on everyone else. The media, the TV shows, it's baked into American life. If you try and express it's helpful to have compassion rather than default to the idea that others are cruel or not working hard enough, there is push back. "It was hard for me, so it's only fair if it's difficult for you" seems to be a motto. It is a Hard life, creating Hardened individuals.
Autism doesn't just mean I feel or sense things INTENSELY but is combined with a feeling and sense I cannot find the language for. I cannot express how maddening and frustrating this is. Women used to be burned at the stake for accidentally expressing things like math or chemistry existing.
Because of the way (it seems) we are wired, to take in far more details and possibly process complex information we haven't read about yet and might not read until university, we know too much and without the tools to express. We can "sense/feel/calculate" an when something is inhumane, dangling dignity like a carrot. For me, it would be well into my 30s I would start having the 'language' to identify concepts like these that a therapist could've helped give me the insight and understanding for in my teens. Instead, I sought out church groups - they were free, but these are not trained in
We (autistics) don't understand the systems of hierarchy and don't understand why the aggressiveness is even needed. Humans are obsessed with Power. If a neurotypical was 'told' to do the dishes, and they were fed up with never being spoken to with a kindness and respect, they might have received the codes to know it's their turn to "play" ball. So they might do the dishes and do something secretly horrible. A woman I know used to go to a girls boarding school and there was a full on Misogynistic Head Teacher the girls felt micro-aggressions from daily. They lived somewhere with milk delivery, the kind with a little aluminium foil over the top you could replace & not know it wasn't opened. They would wake up at 4am just after delivery and pee in his bottles. That's how NT kids handle aggression, with an equally micro-aggressive revenge. Autistic children don't use the language/semiotics "lobe" the same, so they don't know the rules of the 'secret' power games, but I can tell you she is not crazy.
I could be wrong, bu she sounds desperate for protection. Among many other things.
If you don't know what is going on, find a therapist, and fast, who is on her side, an Autistic one if you can who can, to understand what she's struggling with to translate. "I need someone to help me understand what is happening - I want to know how to be a better mum, perhaps this person can help US".
My job as the parent is to always help because I can. I'm older, wiser, and can take the punches. I can put my phone away when it's not work and 100% focus on my kid. My grandmother taught me to give him ALL my focus if he needed it. He only melted down in a store once. I abandoned everything took him to the car and he settled down. Eventually he got used to knowing I was always available and didn't demand attention. By 3, I would teach him to wait a few minutes by asking if he minded and always follow through. Now he'll ask if I have a minute. From a young age I've treated him better than clients.
My son is now 25. All children with divorced/separated (for whatever reason) parents will feel their parents change 'loyalty' from protecting the child to protecting another woman or seeking protection from/siding with an outside man. This tiny shift seems harmless, but it is akin to creating a new corporation and one where the child is outside of in a very strange psychological way. A partner is who we should 'team' up with, and when it's mum and dad as a united front, it can create a grounding for children (parents still need to be respectful). But an outside human shifts the dynamic and the unit is no longer always the first priority. This is unsettling for all children. It's not always financially feasible to stay single, though.
When in doubt, you could start with this woman, she'll help in a pinch not expensive www.instagram.com/.../,
Disclaimer: I don't know what raising a child is like and I don't have an intellectual disability like your daughter but I did have angry outbursts beginning as a tween/teen (not to the frequency/extent you describe) yet was a good student/child outside the home and have been reflecting a lot on that with my therapist as an adult. This is all speculation but I hope something in it is useful. I cannot tell you anything about psychosis, schizophrenia or any other mental illness but I would suggest reflecting further on the influence of the environment/people and take a more trauma-informed perspective on her behaviour.You probably need to take further action to decrease the demands in her life overall because these outbursts are likely from being overwhelmed. If she is well behaved at school but so worked up to the point of self harm and violence once she comes home then something is still wrong. School is a very important environment to consider because it takes up a major portion of her life - just because she is well behaved doesn't mean all is well. Masking is not good for autistic people's mental health and she could be masking her way through severe discomfort every day. You may need to greatly reduce your expectations on how much she can actually cope with to get the meltdowns to lessen. What may seem like a normal low-key environment or a reasonable weekly schedule to allistics could still be deeply distressing for her. She is able to appear neurotypical-enough at school (probably to avoid further social ostracisation and teacher's discipline) but it is at the detriment of her and your overall family's wellbeing. She's constantly functioning at a deficit and her public life is a highly mediated performance to fit in. Thats grim and no wonder she's emotionally disregulated.
Another thing that comes to mind as to her sudden change is that starting puberty is a very difficult time. I remember feeling a big change at age 11 when I moved up a year in school but the social expectations of the people around me shifted and everything was suddenly so much more complex with my peers. What limited social skills you can get away with as a neurodivergent child don't work any more once your peers all begin to want to act like mini-adults. There are new expectations and often these are toxic - kids and teens especially really scrutinise each other. I think it can be quite traumatic for autistic children - then add in the hormonal emotional shifts and the bodily changes that you physically cannot get away from. Thats just something she has no choice but to ride out but please take this into account over the next few years.
I am concerned about the impact of her older brother's behaviour. While he's gone now it could have had a lasting effect on her. If it only stopped because he moved out I am wondering how bad it could have been (taking into account his ODD diagnosis) that parental intervention didn't stop him? If she was feeling overstimulated from school and then she came home to being mentally pushed over the edge by someone who she can't get away from - then this was a significant lack of safety in her home during her formative years. What is her safe space now? Is her behaviour just her trying to establish safety in an unsafe world? Is her controlling whether your partner comes over part of trying to feel like her home is hers and she gets a say in what happens there?
It is also possible to adjust your schedule with your partner so he comes round less often while she is there. It is a sacrifice but could gain you and your daughter some opportunity for peace in the short term while you figure this out long term. Make sure you can definitely rule out that he hasn't been mistreating her. You say she looked at you both "like a jealous ex lover". I worry you are projecting strangely malicious and adult intentions onto her there - she's 11 but is younger developmentally. She probably just wants to keep her mum and her home to herself - to exert control of her caregiver and her space to feel some control in life that feels really out of her hands.
I know parents don't like "giving in" when their kids "act up" but perhaps reframe it this way: she feels out of control of her life and is trying to establish some control. Her way of being in the world is incompatible with society and she probably feels really messed up by that. I wish I could explain how that feels in your body and in your brain - let alone when you only have the emotional processing capabilities of a child. She has also been purposefully tipped into meltdowns by her brother which to me sounds like bullying. If you think she hasn't been mistreated at school you and the teachers are naive.
These meltdowns and outbursts are a build up of unbearable pressure and mental distress and the only place she is able to release it is with you. I am sorry that it is becoming more extreme but she likely feels trapped in her life and has nowhere else to put this frustrated energy. As she is getting older she probably has slightly more understanding of using emotions and her actions to gain some crude control over situations. Yes she is angry and frustrated and is likely discovering more of her autonomy as she ages - but remember to avoid the urge to attribute a kind of adult and neurotypical-logic malice to her actions. It sounds like a child who's had a very difficult start in life using the very limited tools she has to hand in response to life stress. This is an unhealthy coping mechanism and I am not saying you should allow her to dictate your life but you need to make adjustments to lower life demands on her in other places and hopefully the intensity of her meltdowns with lessen. Then you need to look beyond whether the behaviour is disruptive to really find out - is she okay?
There is no easy answer but I think keep trying to understand her internal experiences more. You need to seek out different ways to communicate than getting her to verbalise her emotions in conversation. Keep observing and learning her signals. Tools like an emotion wheel or a more simple traffic light system for indicating levels of overwhelm through the day. Make sure non-neurotypical expressions and ways of relating being honoured and accepted within the home. You need to continue learning to understand autistic thinking, feeling and expression too - not just investigate the cause of meltdowns to head them off but to gain a holistic sense of what its like to be autistic.
I think the traditional parenting response is to discipline bad behaviour but I feel like that has the potential to just raise the stakes and prolong a cycle of misunderstanding and anger towards each other - especially as she becomes a teenager. You called the police on your disabled 11 year old - this is a sign you need more specialist help before it gets to this crisis point. If you can, spend $2000 on help before its an emergency - if its money you're going to be spending on emergency room visits anyway as this situation continues. I wish I could point you to something specific and I know services are underfunded and over-priced but its clear things are unsustainable with the provisions your daughter has been given so far.
Violence or outburst are caused by you not acknowledging or meeting her demand needs or struggling to communicate which is causing frustration which builds into meltdowns.
your perception and the language you choose to describe your daughter shows that the issue isn’t your daughter it’s you. Your choosing to interpret her behaviour negatively instead of trying to understand the thought process behind them.
Emotions and feeling are difficult to navigate even for adults and autism co-morbid with intellectual disabilities are going to have similar but completely different thought processes.
children are cruel, it takes a few seconds of being distracted for something to happen and you not witnessing. Your daughter is getting frustrated because children around the age of 9-10 become hyper aware of a child who is different. This often lead to unresolved frustration in the autistic child or child with additional needs because they can’t understand why their being actively rejected by their peers.
stop being crucial and stop with the expectations, your daughter will develop at her own pace it’s just going to take longer. Not everyone is designed to be social. Believe it or not their are some people even without autism that prefer to be by themselves than with others so stop forcing it.