Help with sister

[SiameseCatMum]

Hello, I'm looking for some advice. My younger sister (she's 30) has learning difficulties, she is diagnosed as dyspraxic, but everyone who knows her knows that this is not the full extent of the difficulties she has, we believe she is probably also autistic (or similar), but she's never been assessed as such. To cut a long story short, my parents divorced some time ago and my mum has been her sole 'carer' for want of a better term. My sister is capable of looking after herself to an extent, but if all of our family dropped off the face of the earth, she would not be capable of running a household solo. She has some of the classic signs of autism, such as difficulty understanding other people's opinions / emotions, and does not like routines to be disrupted. I have spoken to my mum about trying to get her assessed again but she becomes quite stressed about the topic and is always quite vague about it. I think she is in a way trying to protect her from the stress of it, but I feel the whole family would benefit massively from some support either from social workers or something else. It is becoming increasingly stressful to support my sister in certain circumstances, even though we have known her all her life, communicating things in a way that she understands is not something we always know how to do. This then has a negative ripple affect on all of us, as it is often frustrating for us and obviously distressing for my sister. I guess what I'm looking for is advice on how to go about getting some help, because I don't want it to carry on this way. Thanks for reading and I appreciate your time and any help will be gladly received.

[Eeviee]

Hi. Without knowing anymore than you have written I wondered if your sister has ever had any additional support in her life and if she is on social services radar? If not I think it would be a good idea. Depending on the level of her abilities she may be eligible for some support but at her age supported living would be an area to investigate but this usually means not living with a relative. This also requires moving into separate accommodation. There are other alternatives but first stop research or contact mencap and contact social services but be clear what support you want. Future planning is crucial as your mother will not be able to support your sister for the rest of your sisters life. I would get on with this future planning asap. Hope this helps

[outdoorsy1]

not wishing to be negative, but please don't imagine a proper diagnosis will result in any more help. And as someone else has already mentioned, the support only tends to come she were to live alone, and then would only be what she needed to live independently, she would not receive help with communicating with others. If you mum and sister are happy with their living arrangements and are unlikely to change that in the near future, then they are unlikely to get any additional support.

you are unclear as to what you imagine this support you want would look like, although I totally understand your motives are to reduce stress for everyone. But... sometimes having social services involved adds to the stress without resulting in any more support ( voice of experience here). Perhaps the way forward is to work out in your mind what actual help is needed, what you want them to provide, and whether it is something they will realistically provide, before you approach anyone.

[MontyCat]

Hi. I am not sure what advice I can give. Are you aware of any support groups locally that you could get in touch with? Alternatively I guess your local learning disability team and/or social services are the logical first points of call - you may only be able to access the LDT through a social service referral. As an adult of course your sister will need to be willing to engage with any other agencies so, if your mum feels anxious about starting this process, perhaps the first thing to do is to talk to your sister about what help she feels she would need if your mum and other family members were ill or were no longer around to help, or if you all felt you needed some support? I hope you manage to get some effective support soon.

[sl20]

Hi Your sisters gp can arrange for a referral for a learning disability/ autism test. I don’t think social services will get involved unless your sister has been diagnosed with a condition. Even if your sister continues to live with her mum if social services agree she has eligible needs she might get a personal budget which she could use to pay for assistance for example to get her socialising/working in the community. Some people don’t like labels but personally I have found they help you get support. Your mum might be resistant to getting help but she needs kindly reminding that it will be your sister and her siblings who will be left to sort out her life when mum is no longer able to look after her. If she does not meet the criteria for social services support there are charities out there who can still help. Google learning disability/autism support in your area.

[SiameseCatMum]

Thank you everyone for your input, I appreciate your time and thoughts. Everyone is voicing exactly what I think needs to happen, it's just a case of my mum actioning it. I don't think assisted living is what is needed yet, but I certainly think she needs autism testing so that it is recognised in her medical records for the future when my mum can no longer care for her. I'll look into whether or not there are any local groups, I think she would benefit massively from socialising with people who are similar to her. One of the big issues we've had problems with is my sister's use of social media, and although we try to monitor her movements, she has gotten herself into situations on numerous occasions, despite us trying to explain to her the ways of the online world. I wonder if a support group would help us to get her to understand things better, as she is of the mind that she knows best!

[Mandr]

Hi, your sister may well be high functioning autistic (the boys are easier to spot), my son is a young ASD adult with other problems and most of the help dried up on his 18th birthday, (he can cook a ping meal/wash himself so he's fine). But we were pleasantly surprised at him managing to live independently when studying (though the lack of structure/routine was a problem). The routine is a coping strategy, so if you want her to change, do it slowly with plenty of time to get used to it and timetables drawn out to show what will happen in days/weeks to come. They say we are all on the spectrum. Does she like Dungeons and Dragons as this is popular with ASD people?