Published on 12, July, 2020
Hi,
Bit of a weird one here but I'm 26 and was late diagnosed ASD in March. I also suffer from a rare brain disease called IIH that causes an excess of spinal fluid to compress my brain. Next month I'll be going for brain surgery to place a VP shunt to permanently drain this to my abdomen and having a bit of a wobble about how to avoid meltdowns after the operation. Most of my sensory needs are surrounding my head and obviously, there's going to be a lot of changes with it / I'll have hair loss / having to tolerate bandages on it. The other catch is, crying actually causes the inter cranial pressure to rise so puts me at risk of the shunt getting damaged or failing because i have to keep the pressure low in the early days so I'm literally not allowed to have a big panic attack / meltdown!
All the advice I've read online just says minimise triggers / sensory inputs but I obviously can't do that at all and they're the problem in the first place, and my support team haven't had a chance to set me up with coping strategies yet having only just been diagnosed. Any advice from any fellow autistic people would be so greatly appreciated!
Thanks so much!
What Iain said, you never know but with less pressure in your head things like bandages might bother you less?
How about asking for some anti-anxiety meds in a lowish dose to help you transition post surgery and find a new balance with your new plumbing, changed hair and bandages.
Given the risks from it I think this is one of the few occassions where it makes sense for an autist.
I would recommend making a bit of an event about it - get photos and maybe videos so you can put together social media posts later if you want - this may help the transience of it be more acceptable and lower the stress, espcially as you are likely to get plenty of sympathy.
Good luck.