Meltdowns, violent outbursts and an inability to see past self

Hi everyone,

I'm new here (in regards to setting up an account on here - but not new to the site). I have a thirteen year old son, with an autism diagnosis, I'm waiting on CAMHS appointment to assess for possible ADHD and ODD as he displays some characteristics that could tie in with these conditions. My son was diagnosed four years ago this month after spending five years fighting with health care professionals to take me seriously. I have - for the last year - been the only one to have any input/support in regards to my son and his needs. This has been a hard choice to make and it is one that I have made knowing that it was going to a lot more difficult, before getting easier. I've had to cut my mother and her family out of me and my son's life as they were having a toxic impact on our life's, so toxic that it could have ended a whole lot worse than it actually did. Though it's still not going great, things do "appear" to be looking better, but things don't feel right. Not yet any way. I have some professionals involved that don't seem to want to listen or take onboard what I'm saying and don't appear to be listening to me when I'm crying out for help. I've been asking for several months from these "people" to get the proper help in place to support both my son and me in a way that we both need to benefit us. Unfortunately, they have used excuse after excuse to not do this and have left it to the point that things have got extreme before sitting up and even coming close to listening. And don't start me on the communication - it's been virtually non-existent until last week, when I had to go to a certain professionals boss, not something I wanted to do, but here we are.

The last six months haven't been easy, especially. I moved to my current location six months ago to have a fresh start away from the negative people in our lives (who don't know where we are for obvious reasons). I moved here also for a mixture of other reasons, of which have been ignored when it has came to certain meetings, along with a lot of other very important information, which I've had to send in electronically. I've had to also had to constantly repeat EVERYTHING to them. I've also asked for them to put all sorts of support in place (including respite), but it's only got until now, when things are extreme circimstances that they are starting to do anything about my pleas for help. 

My biggest struggles with my son are, not listening, just walking out (it's bad enough to have to lock the door and hide all the keys so he can't get out - for his own safety), hitting - his hits are really hard these days - I have brought up all this to the relevent people and there is evidence over text and email about this, so they are definetly aware. My son is having an abundance of meltdowns lately. He gets bullied over things that he can't always help, he also struggles with verbal and non verbal communications, as a result people take him the wrong way and as a result - they end up attacking him, knowing fine well that he can't always help what comes out his mouth. This is something that I've tried so hard to work on with him, but unfortunately he isn't the worlds best listener. It's becoming increasingly harder to try and nip the meltdowns in the bud before they become full blown punching and screaming meltdowns. These have gotten so bad that a neighbour feels the need to shout abuse out their window and call him a "mongo" (pardon the m word). Said neighbour has never made an effort to come to my door to speak to me about my son, only shout abuse out into the street and cause us embaresment. 

Although I am starting to get there - extremely slowly - but surely, I need some help and advice on how I can better help my son, in a way that will help him calm down, his biggest issues just now are - going to school because of bullies, but also because he thinks it's beneath him - he's at an average level all subjects but is nat five level for computing - thats fourth year level despite being in second year. He also has issues with the Scottish weather (yes - I know eyeroll haha), he fails to understand that nobody can control the weather - not even him. He's a skateboarder rain aint good, there are no good places for him here to skateboard and constantly dictates that I need to move him to a city - we live in a rural area to get away from the big city and all the bad things that CAN come with living in a big place. He has little to now understanding of the "real world" for someone his age and struggles to understand explinations when I try to explain in a way that he will understand. He just struggles to understand in general that things can't always go his way. 

If anyone has gone through anything of a similar nature and knows what to ask for with "professionals" then that would be much appreciated.

  • At 13, you could’ve said the same about many of us here - especially me. 
    Not seeing the wood for the trees is part and parcel with our Autistic design and it has an advantage when mature. I think this is one part of what “Montotropism” means  

    We also might be a bit more able to cope with the natural world than the social. He might still be too young, but it can be beneficial for him to learn about clouds and weather patterns or the science of the natural world. And then also what he can control from the different types of fire extinguishers to how biology responds to fibres (this is how I’ve learned to dress appropriately). Perhaps there’s something that sparks interest which can be a foundational thing he can work toward, such as a compass and its magnetism or navigation by the  stars. And not to overwhelm all at once. I would’ve stayed out all night when young- the smell of the air, the grass and moonlight were sensory magic. Some are social-tribal beings, and others nomadic, belonging to the earth like our ancestors. 

    It’s incredibly hard to understand just how different most are when we think and perceive the way we do. We all project our understanding of the world on others. It’s hard to break out of that. As a mum sometimes the best thing is to just focus on helping them learn what options they can make choices over. The more agency you can help him achieve the better:)

  • currently waiting on him getting into CAMHS to be tested for ADHD, as previously stated in other comments, he has absolutely zero sense of danger and struggles to identify a bad situation or bad people before it's too late

  • unfortunately because of the way his brain is wired - he's too vulnerable for the big city, he's also too gulable and believes everything when it's not always true, he has a false sense of reality and people

  • I do listen to him and try to reason with him, sometimes he's just too headstrong to understand why certain things are in place, and doesn't understand safety, he also thinks that nothing bad will ever happen to him, As much as he is advanced in certain areas, that doesn't make him street smart or aware of how others can act, despite being bullied, he is constantly putting himself in positions and can't understand that what comes out his mouth is the reason to why he gets bullied - he - in effect - can't see the wood for the trees. I do have official people in trying to work out what best stratagies to put in place to help me help him to understand safety and how his actions can lead from one thing to another, my son also struggles to understand that he can't just go out all night in all weathers, and given the recent red weather warning - he struggled to understand why I was locking him in the house, in my area - there has been plenty flooding and trees being blown over, he doesn't see this as a safety concern, he has also struggled in understanding that nobody can control the weather

  • i dunno, i always hated more people around.
    i never experienced city life myself, but i hate alot of crowds being around, just my local town is probably too much, people walk directly into you and dont divert course, just walk straight into you. and its only a small town.... id hate to see what a larger more packed city is like daily.

    i went manchester before one time briefly, thats as much of a city i been to, about like 30 minutes there lol i was staring up at the taller buildings as im not used to tall buildings as in towns they are all smaller. lots of homeless lining the streets of manchester i remember. 

    tokyo has lots of open shops on all its street facing building entrances from what i see on youtube vids of tokyo, while manchester instead just has a bazaar of homeless people lining every street facing building front instead.

  • Curious why you'd suggest this? Most children won't have any idea what the impact of city life feels like if they haven't experienced it, and even still might not be able to recall if it's only been momentary, as we tend to get 'stuck in the moment' of now. In fact, for adults, forgetting is a super power, which is why anyone can be nostalgic about the past, even if it was much worse than the present. 

    The desire to belong and the need to have soemthing one can actively pursue is important for individual growth. I reckon he'd be happy having mum move right next door to any skate park even if was in the middle of nowhere. :) 

  • he wants to be in a big loud city surrounded by people then?

    id say that veers more towards ADHD in that case.

  • It sounds like you've been though so much! 

    The agency to exit when overwhelmed and not feel trapped might be a change worth making for everyone. Is there a reason locking him in is a safety issue? Children need to expend physical energy, not just for health reasons but sometimes just being in nature can bring about a sense of calm. It sounds like he's not only fighting loosing battles at school, but he has nothing he can win at and this is no good for a boy his age. My other concern here is, bullying is also a type of entrapment. If he's constantly experiencing life as a prison camp, it can really halt growth. 

    My son practiced skateboarding in his room or a designated area as sport where the competition is and act of overcoming myself can be really esteem-building for autistics and divergent / introverts. I've discovered skate parks are an incredibly unique form of social bonding and tend to be more inclusive for divergent kids. My son is older, but is genuinely considering moving to Sheffield because of the skate park and the social collective that creates. 

    If the only thing your son is winning at is academics, he may appear "above it", but this may be the only thing to provide him a sense of worth or purpose. Erich Fromm, a sociologist from mid last century talks about how Isolation is potentially the most deadly to any human. It's the gateway to all kinds of ruin. And while some of us are far more introverted than others, we will still need a sense of community, if even once a week to survive. 

    When any of us experience trauma to any degree, we will close up and withdraw. Your son may not seem like he's listening, but active listening is something thriving humans do. When one has a sense of being supported and protected, when we're no long just surviving, we learn with less effort and greater efficiency. More often there is a combination of being overwhelmed, but most likely, he might not only be listening, but with a loss in translation, or even if there's any nuance of mixed messages (words/ actions/ intent not matching), things might not be making sense.

    The best thing to remember is that we can never force a process, nor cut it short. But I also love the theory of inverting the problem - when I noticed my son not listening, I started creating space to listen more to him. 

  • I never thought of PDA, I'm sort of familiar with the term, I do have a referral to CAMHS in but as you know, the waiting list is mental. I do have a family support worker there who has been excellent helping sort out a few other things going on in the background, she's aware of everything going on and is now focusing on trying to help me get into a good place with the wee fella. Yesterday and today have been absolutely horrendous days as we're near the highlands and have the only red weather warning in Scotland (as far as I'm aware of) in regards to Storm Babet, he's been going crazy to the point I've had to lock myself in a room to protect myself whilst he comes out his meltdowns. He's struggling to cope with not being able to get out as a result of the storm and the red weather warning. I've kept the family support worker updated on this so she can look into ways to help me manage them better.

    Thanks muchly for reminding me about PDA, I'll run it past the support worker and get her opinions on it

  • Hey, my son is 9, although he was diagnosed asd aged 5, its now looking more like he has PDA which has led to the wrong way of strategies to help him cope. He has unfortunately regressed severely, but that's from separate medical issue. 

    Also the absolute pain of getting services on our side has been worth writing a book about. I honestly can't offer you advise on that. But please do start looking at PDA and other parents who have children/teens with it. It isn't actually formally diagnosed in some parts of the UK (my district lincolnshire doesnt).although several other professionals have said he definitely has it on the severe end. Learning a completely different way of wording things, reverse psychology, complete opposite to what you feel is socially normal is the way. 

    I'd be asking GP for cahms referal now as the list is rather long. Good luck and sending you strength mum xx