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