Published on 12, July, 2020
My son was diagnosed asd in 2019, we coped quite well. Got an ehcp and he was thriving by the end of year 2.
Fast forward to Nov 2021, he suddenly started with a sensory issue to tissue. Then it progressed to wrappers on sweets, crisp packets. He started to bang his head in response.
Then it was foil, burps and any form of plastic. Lots of support at school too, but it became so severe we started part time schooling last summer as the food smells from dinner Hall even in the air triggered his self harm.
Now he headbands constantly every waking minute every 30 seconds. Triggers, it will be very very hard and cause damage.
Despite of this and all the professionals and meetings between around 20 people.
Referral to medical paeds x2 declined
Cahms declined
Occupational therapy declined but now on waiting list
Social services can't help
Ehcp been scrapped and new one written = 20 weeks
We are exhausted. He's harming, his sisters have no life but yet there is no one who can advise us what to do!!
The summer holidays I fear I won't cope mentally at all, I kept quiet last year about almost taking my own life.
We can't touch plastic wrappers, cook with doors open, burp, sing, even use toilet paper. His young sister gets hit if she even talks somedays. All documented too
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
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
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.
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.