Advice dealing with hurtful comments and aggressive behaviour please

I hope your meeting goes well and you get OT. Our local NHS OT dont accept referrals for this so we were refused, yet every report and other professional jas told us to seek OT.  Im beyond done. Last night and this morning we had huge meltdowns, seemingly because porridge was the wrong consistency, his brother spoke too loudly, his step dad answered a question with 'i think its too early when he wanted yes or no...so I will continue recording it for them all to continue failing us. Feeling defeated today. 

We've gone totally no demand for now to try and just recover from burnout on both of us. School can wait. 

Thank you. We were advised by the complex behaviour worker to ignore all negative language and not respond at all. However we have now been given a resource when with me in mind refused his referral to record our responses and that he may be doing this due to our responses. I feel completely gaslighted at every turn, following all the advice im given which is so exhausting, having to monitor every word I say, the tone of voice, the breath, not use too many words, etc, and then get told again that maybe its because of my response he is doing it. But none of them will provide any direct support to him!  How did you get a referral to CBT, may I ask?

Thank you.  He always throws the walls up when I ask him about things but after a wee while he will just come and sit by me in his own time and tell me something about his day that's upset him or whatever is on his mind.  

No he's not like this all the time.  It's usually after a day of masking at school or something triggers him like a game he's playing not going his way.  He's a very loving little boy, he just struggles with processing his emotions.  They just erupt without warning to the extreme.  

Sorry I forgot to mention that my son attended equine therapy for around two years which helped him to communicate and talk about his worries as he calls them. His therapist is who advised me on distraction when trying to talk about things. 
Was also advised not to bring anything up right at bedtime or especially if there wasn’t time to have a conversation. 

I hope things become a little easier for you and your son

I found that my son would communicate a lot better if we were doing something together like playing with Lego or doing some crafting or art. 
It seemed to distract him enough to open up more and that way I could advise him on how to express his frustration in a different way.

Its worth a try 

Hi Frin, I'm sorry you are going through this. Most people here gave you advice,  so there is not much I can say. Maybe your son is for some reason frustrated, maybe deeply frustrated, but he himself does not understand why. Atherapy could help manage it.

I was usually aggressive towards myself in my childhood and teens, but I also remember screaming to my mom's face - why she gave birth to me, she should have done an abortion. It wasn't that I really meant it, but it was a cry of frustration that i was so different. It hurt her, but she has never done anything with my problems.  There are more therapies available now, so I hope you will find one for your son. Is he all the time like this? I remember that I was very quiet and also caring, I used to help my mom with all the household duties since the age of 12. But in certain situations I was terribly violent.

I'm in the north east near Middlesbrough. Thank you for being so understanding.  We have a meeting at school this afternoon to go through an OT referral and to start the process of getting an EHCP.  I have considered homeschooling but really not convinced it would work for my son. 

I do give him time and space to open up.  EBSA  is something we are working on.  I've done alot of work with him in an Attempt to understand what the good and difficult parts of his day are and the school are really supportive.  

I do all of these things already.

These are extreme expressions of the stress your son is under. He says that ‘he would rather die than go to school’ - then he is telling you what the problem is. Autistic children can have a hellish time at school and imagine how it must feel to them to keep going in - day after day after day for years on end - to a place where they are really suffering. No wonder they reach the end of their tether. 
Sit your son down and tell him that you are 100% going to deeply listen to what he is going through - and that you are 100% there to support him and help him with the th8ngs that are causing him such deep distress. This might even involve him leaving school for the time being. Not going to school won’t kill him - but severe mental distress and suicidal ideation could kill him. As a last resort not going to school has to be on the table for children who are experiencing severe distress because of attending school.

Your son is obviously feeling unhappy and distressed to be saying these awful things. Could it be a cry for help in someways? Obviously when he says these things he gets attention from you - and as you say he gets angry when you ‘fail to react emotionally’. If I were in your position and sit down with my son and say words to the effect of: 

‘I’m not hear to judge you - but i want to understand why you say these things. They’re very upsetting to hear - so can you help me to understand why you say these things - because i feel you must be very unhappy to say such hurtful things to the people that really love you and care about you? Is something worrying you or upsetting you? What is this really about - and how can I help you? ‘

Basically make it clear that he has your unconditional love, and that you just want to understand how he is struggling, and to help him deal with the difficult feelings he is struggling to manage. Create space for him to be able to express how he feels, and make it clear that you want to really be there for him, to really listen to what he wants to say, and to make it clear that your only wish is to help him, and for him to feel safe and loved. 

Im so sorry you're in this position, I have been fighting the exact same issues. I also had to call camhs crisis line last year when my son tried to grab a knife. They told me 'he isnt going to hurt himself because he is 8 and you are with him all the time keeping him safe'. If that didnt make me feel totally responsible if he did hurt himself whilst I dared to go to the bathroom or sleep?!

Ive asked the gp for a referral now, we have autism teamat school, complex behaviour for home, senco, ehco application, asked for OT refused. Referred to with me in mind refused "no real risk its likely he is using language due to response of caregivers, they completing this ABC sheet to document the behaviours'. It's an absolute joke trying to get help . He is now out of school totally, and has shown some improvements in his regulation but at the end of the day I am not a child psychologist, I can't provide the support he needs but every professional just gives me more and more resources to use which are conflicting  and overwhelming.

I'd suggest trying a private service and not waste your time on camhs etc. Even if they accept you'll be waiting 2 years for any contact or support. 

 3 years now we have been pushing for someone to work with him and even now still being offered 'emotional group work in school'...he can't get to school!!! 

Where abouts are you? Im in North Lincolnshire. Sounds like we have very similar things going on. 

Sending you all the love, its beyond difficult z

My head has been swamped and I totally missed this reply so my apologies.  Things are escalating. A few weeks ago he declared that he would rather die than go to school and I had to tackle him out of the knife drawer in the kitchen and physically restrain him.  I do not know if he would have actually hurt himself by the fear was real.  All our sharps are now locked away.  I reached out for support and was told to ring CAMHS crisis line where I was told that they couldn't help me because it is "an autism thing .... Not really a mental health crisis" I felt so let down, they then told me to approach daisy chain who directed me to school services who told me that his needs were too complex for them to deal with.  I mean.... WTAF.  Obviously we are fighting to get him some support ....how far does it need to go before someone will help him? He has started punching and slapping himself in the head and face now which is awful to witness.  His hurtful comments continue and his violent outbursts are getting worse.  We have a meeting with school tomorrow to discuss an OT referral where he can hopefully get some 1:1 support.  

I also experience this with my 7 year old who is Autistic and ADHD with demand avoidance. He will use inappropriate language mainly at home and talk about killing and death. I usually ignore the language or suggest another word to use in its place so for eg he will say shut up when I am speaking to him which can be very annoying and although I have firmly said he is not allowed to speak to me like that, it often does not work and he does it even more. So I either try distraction or say, is it too noisy in here? Is that why you are using the phrase shut up? You can say mummy it’s too noisy and that can alert me to keep my voice down. Or something like that. With the words such as killing or death I usually ask him does he know what these words mean? Usually the answer is no. So I then ask why are you using these words then? It most likely something he has heard from someone else. It’s also the Audhd brain not knowing the appropriate language to use so I have got him a referral for CBT Therapy so let’s see if that helps. 

Hi Frin,

I am so sorry you are experiencing this and I cannot imagine how you must be feeling. Please know, you aren't alone. I am struggling with my son(10y) who can be verbally and physically aggressive. It is exhausting and heartbreaking. I hope things get better for you and your family. 

Loz

Hi Frin, 

I have two sons, my youngest is 9. Both are ASD but my youngest displays behaviours similar to what you have described. He has now started targetting his language at me during meltdowns, that he hates me and that I am the cause of all of his issues. He often talks about dying or killing himself, not others as yet. I understand how distressing this is (I am currently in my bedroom crying as we have had a full day of this), and the feeling of total helplessness and not knowing what to do is just crippling. You are  not alone, happy to chat 

Thank you.  I will have a read through it all.

Thank you.  

Hello Frin, it sounds like you may need the help of a child psychotherapist with experience of working with autistic children.

I don't think these are available on the NHS but it is worth checking with your GP and school SENCO as to what resources they can bring.

From what I have heard from others I don't think there is much free help that would be suitable here but the Advice And Guidance links at the top of the page have lots of resources you can check.

My suspicion is that you will need to go prvately to get meaningful help but I hope you can find a specialist who can make a difference for you all.

Good luck.