Undiagnosed disability?

[Mel2024]

My brother is 43 and we believe he has an intellectual disability but never diagnosed.

Since my mum got Ill I have been keeping an eye on him more closely. He lives by himself (a house bought for him by my parents to give him and teach him some independence) is able to care for himself just about, get himself to work by bike, (he is a shelf stacker at a supermarket) work the tv, make a cup of tea, wash up, work a microwave and washing machine (after giving very basic instructions) however he struggles to read and write and has a poor IQ and lately I have been so worried about him living by himself due to things not working correctly in his home.

He gets ashamed and embarrassed when things break and will decide to just live with his problems, for example I found out he had no hot water and he didn't say anything and for weeks he was showering in cold water until I noticed when I went over there. This isn't normal behaviour and I don't quite understand it and would like to. This is just one example. More and more things pop up that things don't work in his house that a human being needs to live and it is now making me think, can he live by himself and this is becoming a big problem and a real worry for his future. He struggles to follow basic instructions and is easily influenced by agreeing to anything that's asked of him. He is okay socially and is able to talk to new people and make conversation.

When my brother talks his speech is not good and has very poor English, he was born in this country.

I would like to learn more about his disability and understand more about it, but how do I go about doing this as I feel this is a real unsual disability? Is there anyone out there like this!? My parents didn't do any assessment for him as a child so a diagnosis was never made.

Any advice would be greatly appreciated.

[Jofisher]

I would speak to adult social services as he’s at risk of self neglect etc etc and they can advice you and do an assessment and then go from there also speak to the carers association as they’re really good. Mencap helpline are also really good and see if your brother will agree for you to be his lasting power of attorney for property and finance and health and well-being so here’s a few places for you to start good luck and please let us know how you get on. The lasting power of attorney can be done online on the gov.uk website otherwise a solicitor can do it but that’s an expensive way of doing it. He maybe also entitled to benefits that he’s never claimed

[Mel2024 in reply to Jofisher]

Thank you very much for the advice, I will start here!

[Jofisher in reply to Mel2024]

Your very welcome good luck

[MissStumble]

Self advocacy is really hard when you feel anxious and don’t understand the world around you. It could be a mixture of Autism, learning disability and sensory processing difficulties. He will have learned ways of copying behaviour to get by and actually may be internally anxious all the time. The accumulation of things not working becomes overwhelming and then his executive functioning skills are not there to help him work out what he needs to do. I would start with a sympathetic GP if you can. Social care are rarely helpful if I am honest with direct experience for my two young disabled people. It depends who is allocated and the system is broken. Worth logging with Adult disability help desk. Is there any money in the pot that you could take him privately to see a good Occupational therapist that would be my first port of call, along with speech and language therapist. You can self refer to NHS also for these and explain the difficulties. Next would be looking at Autism assessment. The more evidence you can gather the more helpful it will be gaining right and lawful support. He sounds very vulnerable and needs guidance while keeping his autonomy. Being assured there is nothing wrong with him but perhaps he may feel happier knowing he is being supported in the ways he needs. This is not unusual in terms of having cold showers. It is part of not being advocate or knowing the steps to take. Anxiety then prevents reaching out because he has spent his life bluffing trying to cope. You are a caring soul and asking all the right questions. Don’t be afraid to be pushy when seeking support, it’s not an easy path. Good luck

[Mel2024 in reply to MissStumble]

Wow thank you so much! This advice means so much. You have really helped me to understand this a bit better and where to go from here. Thank you

[Rocky71]

I've also got a learning disability i was diagnosed at 41 I struggle with lots of things I have a family and kids its took me couple of years to get my head around it and learnt alot along the way firstly I would speak to your gp they normally send him to learning disability services to be assessed also try and see if theres a organisation what deals with learning disabilities and autism to try and get him out of his comfort zone baby steps into the community