Sudden Prolonged Decline

My younger brother is 17 and has moderate to severe Autism and learning disability. He has previously been able to make his needs known and functioned pretty well with support and care from my mum up until recently.

He enjoys spending time with his family, especially his nieces and nephews, and is generally seen as another cousin. He enjoys tinkering in the garden, playing on his PlayStation, watching videos on youtube (watching a fan spin is his absolute fav), and he enjoys going on bike rides with the kids supervised by adults of course.

In early November he went on a bike ride with our mum, stepdad, and young nephew. He will often ride off in front and then come back to mum which has worked well up until this occasion. he rode off in front and somehow got lost. He was lost for about an hour in total and was found standing next to a bench that they has previously passed. He was very quiet but could not tell mum what had happened so she assumed that he was in shock and took him home. He quickly declined over the next few days was not his normal self at all, began mumbling constantly, not engaging in conversation, and not sleeping at all overnight. He had to be prompted to do even the slightest thing, like eating, toileting, eating, standing, and sitting down. He even had to be dressed and washed by mum, something she has had to do completely by herself for years. She took him to the GP who gave him antibiotics assuming an ear infection but not confirmed.

Over the next few days, he declined even further becoming very distressed and aggressive smashing the house up. My mum and sister took him to A&E as this was not at all normal for him as he is normally very kind-natured and a caring chap. 

He saw CAMHS rise who couldn't really help except to advise sleeping pills and medication to relax him, or the other option was to section him which mum was not having obviously.

Now it is mid to late Jan he's improved a lot but still not my little brother, still has to be prompted and even guided to do many tasks and is still mumbling most of the time. the doctors have previously refused to investigate any further than a blood test as there isnt evidence to suggest its needed.

been to the GP this afternoon who agrees something has to be done as it seems neurological in nature.

Has anyone experienced something similar or know what could have such a drastic change in him??

Parents
  • Wow, that's awful! So bad that they won't investigate properly, they surely would if he was "normal" and underwent so drastic a change! (Please note the quotes around "normal", I felt that the best way to express what appears to be their prejudice).

    It seems likely something happened in that lost hour on the bike ride. I wonder if it was the trauma of getting lost which caused a shutdown which got worse, or whether the reason he got lost was something medical, like a stroke or mini-stroke or he fell and hit his head (though one might expect physical marks). Or one might even wonder if he was attacked during the lost hour, although for autists a trauma response does not need such a strong cause, so it wouldn't necessarily need something like that to cause a shutdown. What had been a safe and enjoyable experience suddenly became a scary one, that could be enough to turn his whole world upside down, he can't trust things he enjoyed not to suddenly become a nightmare. And then because he can't communicate well he can't be easily reassured and he can't process it. And then it does get worse.

Reply
  • Wow, that's awful! So bad that they won't investigate properly, they surely would if he was "normal" and underwent so drastic a change! (Please note the quotes around "normal", I felt that the best way to express what appears to be their prejudice).

    It seems likely something happened in that lost hour on the bike ride. I wonder if it was the trauma of getting lost which caused a shutdown which got worse, or whether the reason he got lost was something medical, like a stroke or mini-stroke or he fell and hit his head (though one might expect physical marks). Or one might even wonder if he was attacked during the lost hour, although for autists a trauma response does not need such a strong cause, so it wouldn't necessarily need something like that to cause a shutdown. What had been a safe and enjoyable experience suddenly became a scary one, that could be enough to turn his whole world upside down, he can't trust things he enjoyed not to suddenly become a nightmare. And then because he can't communicate well he can't be easily reassured and he can't process it. And then it does get worse.

Children
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