I'm about to give up

NAS80149 said:

and as he actually can't tell me when he's ill

Why not?

NAS80149 said:

flumist vaccine

Interesting. Are you American? Just that specific brandname isn't used to market that vaccine in the UK.

Anyway going to the doctors is a stressor for everyone. And if you leave feeling ill, say from vaccine side effects, that could exacerbate preexisting anxiety.

You know what I had something similar, I had a booster jab and because it immitates the virus I did feel ill for a few days afterwards, and when I'm ill it feels like not just physically being run down and overwhelmed by the senses of all that but also it was like I had mood poisoning for a few days too. I don't believe in anti-vax stuff but I do think there is a type of allergic reaction that just fundamentally upsets the body long term in the same way that Covid can turn into Long-covid.

Perhaps there is something in that first really adverse sensory flare up, afterall not all allergic reactions look like anaphylactic shock.

His sensory instantly started after he had his first ever flumist vaccine, and all I can think is maybe after he felt poorly or highly sensitive at that time afterwards, and as he actually can't tell me when he's ill, it triggered something

 However this week has been troublesome, but tonight when he went to attack his little sister for talking (not even I'm the same room). I just feel exhausted, sad and at a complete loss. We got cahms appointment for late September today. I won't cope in the 6 week holidays,no one is listening 

Have you heard of the following? 

https://www.citizensadvice.org.uk/wales/family/looking-after-people/direct-payments-w/direct-payments-what-are-they-w/

I am wondering if the Local Authority would consider this for you and or your son? 

Well sensory issues are generally set in stone. So if there was something he previously was fine with but isn't now there is a good chance the product changed. A change of ingredients or manufacturing methods can change the taste and textures of things. It might also be that things he previously tolerated he no longer will. I don't like Red Lester cheese. But for years I ate it when my grandmother gave it to me because it was less unpleasant than Cheddar (what my parents bought) and I couldn't stand to disappoint my grandma.

However it's also quite possible that a lot of this has to do with anxiety and control. Sensations need not be unpleasant to trigger anxiety. For example the majority of the food smells from the dinning hall probably don't upset him, depending on the menu that day, (I mean curry can be really stinky) but he associated the dinning hall and its smells with things that make him anxious. Like being pressured to eat food he doesn't like, or noise, or navigating a crowded space, or explaining to the lunch ladies what he wants with out getting given something 'wrong' that he won't eat and getting blamed for wasting food etc.

Or the plastic wrap thing. It's probably that certain types of plastic make an unpleasant sound rather than the feel of the plastic. (otherwise why would it matter that you touch it) And because he's not sure what plastic will make the unpleasant sound he's now stressed any time anyone handles any plastic around him.

I knew a girl once had a paranoid fear of balloons because the sound of squeaking or worse popping balloons was a sensory trigger for her. But she took it to an extreme that no matter how many precautions were taken to ensure they didn't squeak or pop no ballon could be in the room with her. She made the birthday of every kid around her balloon free. She was supper high strung in general.

What I'm saying is if you have a lot of anxiety your sensory issue can expand beyond the sensory issue itself to everything around it.

Because he's verbal you can start talking to him about this. Ask if he doesn't like things because they taste / smell bad or because they remind him of stressful things. etc. Talk a lot about his anxiety and what makes him anxious. It could be your son needs some sort of anxiety therapy. This is one of the rare cases where I'd guess CBT therapy could help, in terms of him separating out what driven by sensory issues and what's driven by anxiety and how to put good coping strategies in place.

But CBT works best when the patient really engages which might be hard if he has PDA. Given CAHMS had declined twice I'm not sure how you get him therapy anyway.

I know it sounds ridiculous, but have you tried telling him to bang his head? In the hope he will see this as a demand and thus refuse to do it?

Unfortunately I think relying on CAHMS is just allowing this to continue longer since they are under equipped to support the autistic children they already have taken on and that's if they have taken them on at all.
In fact for these
https://emergentdivergence.com/2023/05/29/creating-autistic-suffering-camhs-kills-kids/

https://emergentdivergence.com/2023/03/09/camhs-in-crisis-the-systemic-failing-of-autistic-people/

reasons we as a household are looking at private alternatives to bypass CAMHS entirely, as far as I'm concerned they didn't even get me a first appointment in the 3 years I was refferred to them myself when I was a young person never mind my kid, and I aged out of their service so they could wash their hands of me as an autist back in the 00s and they are no better now, I'm not gonna let them damage my child by kicking  the can down the road only to provide inadequate support too little too late.

My advice is to go to  YoungMinds website and look for services in your local area that can at least provide you and your son with some help sooner rather than later, even if it isn't perfect just to get your foot in the door and ask them who else they recommend is a step in the right direction.

He's very verbal, clever and does communicate. Soon as he hears a trigger, instant hard head banging with no time to intervene. It's this year it has become so severe, we have to wait for another cahms referral then clinical psychologists. The longer we wait, the more damage is Happening 

You say he was doing well but is he verbal can he sign or write or communicate coherently in someway. Because your options and way forward vary massively depending on that

Kids have certain rituals. My brother always kicked the location, while he fell or tripped, while I itch in one area; then scratch the mirror opposite location in my body.

Thankyou to everyone who's responded. I have changed our life to completely adapt to Jack's needs, I'm his trusted safe person when in crisis, limited absolutely all triggers but it seems like he's getting more anxious every week. He also has an element of pda, so any aids to reduce overload like ear defenders etc he point blank refuses. 

The headbanging is more a habit now, and when a trigger it's so severe. He will do it very hard and alot even when he's crying it hurts. Trying to restrain when it is bad he gets worse. 

I'm more worried that no professional knows what to do either, except he's complex..

Hello NAS80149,

I'm sorry to hear that you're having a challenging time with your son. The NAS website has some guides on sensory issues that might help you in some way. Here is the link to the 'Top 5 tips to managing sensory differences': https://www.autism.org.uk/advice-and-guidance/professional-practice/sensory-differences

There is also an article called 'Sensory Differences: a Guide for all audiences' which might be helpful: https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences

Wishing you all the best,

Karin Mod

And I second what Shardovan said, if you get to the breaking point again reach out to someone, you deserve to be heard and take care of yourself too.

I fell foul of the oddly arbitrary spam filter earlier so it's possible this reply will also get eaten and be released later but here goes:

First of all I wanna say you are so strong going on as long as you have and I'm glad you didn't give up or end things, please put something in place so you can also take care of yourself, the strong might not quit, but they definitely need  to take breaks from time to time.

Secondly I'm not going to pretend to know EXACTLY what to do, I'm not in your shoes, I don't live with you, and even though you listed some really key information here I'm sure it is only a fraction of a fraction of what is really going on on the other end of this wifi connection. So the only practical advice I can give you as someone whose autism seemed to go through a worse patch at one point is that when the underlying cause is resolved the external way it is expressed through behaviour gets better. It sounds like you really need to get to the bottom of what A started it, and B what is "holding the gas pedal down" on it when on the surface it looks like it has been dealt with.
If you are tiptoeing around trying to avoid triggers that might not be the best IF (and I do say IF) the original trigger was a traumatic experience linking the stimuli to become associate with a strong negative emotion, like feeling out of control, fear, intense physical discomfort, etc, because IF it is a trauma response the fix may need to to look more like treatment for PTSD than just direct autism sensory avoidance. Have you tried minimal controlled exposure to the triggers where everyone remains calm and the thing immediately stops and becomes a non issue because it gets treated as a non issue?
This is not going to be the exact same but I have to share it to prove a point about how trauma can look through an autistic lens. But the reason I ask is I noticed my own child (I'm autistic and he is awaiting assessment) at age 3-4 saw someone else have an adverse reaction to dogs and modelled the behaviour, flinching and screaming whenever he'd see a dog despite never having his own directly traumatic experience with one, in the end we had to do a very slow paced exposure therapy to get to the point where he can have one around him without physically flinching to get away. And it has taken 6 years to get him to the point that be can tentatively and then ease into patting a dog on the head. It is a very long healing process so IF it is trauma related the sooner you can narrow down the origin and the mechanism of it the sooner treatment can begin. Especially because the treatment must be adjusted to autistic sensitivities and a more paced out time freame so as not to risk everyone burning out. I also mention it because if your son can sense you getting upset when a trauma trigger happens that might be reinforcing the idea in his head that yes this must be the appropriate response because it upsets everyone else too. It can be very tough but in those moments of crisis you need to be the serene and calm one, stead,y unchanging, safe and reliable, setting an example, even if it's just "see? it can't hurt you. something bad might have happened with it before, but that doesn't mean the bad thing is always going to happen." But again that's really my experience of an autistic trauma response.
I really don't expect you to take my word for it alone and really advise you seek guidance on trauma from a childrens PTSD specialist.

We have social services involved now. She isn't the disability side as he got turned down as based on his ehcp (now being completely re done).suggests he's not disabled enough for respite. She tried her best though bless her. Just stuck in limbo not getting anywhere. He is getting worse by the day as no therapy and we are just existing kit living. 

I’m so sorry to hear you’re going through this. I can’t even imagine the day to day stress you must be under. Perhaps you should confide in someone you trust about the suicidalist thinking you went through, even just to get it off your chest. Samaritans if you don’t want anyone you know offline to know. 
 
Would it be social services who would potentially offer residential care to allow you some respite? Maybe that isn’t something you want though despite the challenges. Must be so hard to know what to do for the best.
 
Im glad you did not give up on life. And I hope that others here can offer you something more practical than my mere words of empathy. I’m not a parent but others here are. I just didn’t want you to have no responses before the morning as that’s a lonely thing in a time of great distress. Please hang in there. You are stronger than you know. You’ve already proven it.