To think my mum is holding my brother back and I didn’t overstep?

[Jaders]

Hi all, need some advise or outside opinions

I have a younger brother, he's 16 and will be 17 soon . We don't have the same dad and his dad isn't in his life and hasn't ever been so it's just my mum and brother at home

He's autistic, has ARFID and a learning difficulty, he's not in education and hasn’t been since he was about 7 and prior to that he missed alot of school due to him picking up everything according to my mum (which may have been true).

Over time he stopped eating his safe foods and would eat very little then nothing at all, he was extremely underweight and he seemed unwell and exhausted all the time. In the end he got a feeding tube, this was about 18 months ago and there has been such a change in him

Mum doesn't let anyone else have him (but complains it's her doing everything), she occasionally brings him here but other than that neither of them leave the house and I do feel quite sad for my brother tbh.

About a month ago he and mum came over and I had baked paw patrol cupcakes with my DC, he was interested in them so I gave him one not expecting much but he actually ate some of the sponge. I could tell my mum wasn't pleased though

Then yesterday I had him for a few hours, my mum expected that we’d be at mine (i didn’t ever say this though) but we went for a walk and then to a little cafe, DC had a kids meal pack (sandwich/snack and a carton of juice) and my brother wanted one too, I didn’t pressure him he asked, he ate just the cheese off of the sandwich but that was still a good thing, he drank his juice but didn’t want the bear yo-yo which was absolutely fine

When my mum came to pick him up she didn’t seem pleased but didn’t say anything at the time until later on when she messaged and said she was unhappy i took him out without her permission and the fact he ate food, she mentioned how overwhelmed he gets over people eating in places like cafes (he was fine and not overwhelmed or upset in anyway and then when we got back to the car he said his day was great), she said I shouldn’t have gone behind her back and that she was unhappy at me overstepping

I’m wondering if I did overstep? I feel like my mum is potentially holding him back but AIBU? and WIBU for taking him out?

This was the situation in our family. Family members tried to put a stop to it, but the mother was cunning.

It's possible that your mum has developed such a lot of anxiety around your brother's care that she is no longer seeing things clearly and rationally. Does she go out by herself much? Could she have developed agoraphobia?

I think you need to sit down and have a talk with her - ask her what specifically she is anxious about when your brother goes out - is it the judgement of others if he gets upset? Is it the fear of him running away, possibly into the road and getting hurt? If you can find out what her worries are, you can do a risk assessment and start small, like a walk in the park. You can gently reason with her that it's not healthy for a young man of his age to spend so much time in the house and he needs to get out and about. Does she have any involvement with social services? Perhaps you could speak to them also.

Some of this sounds not dissimilar to the recent documentary that was on ch4 called 'Love You to Death'?

You have not overstepped OP

www.channel4.com/programmes/love-you-to-death?cntsrc=social_share_ios_love_you_to_death

Your mum's relationship with your brother is pretty fucked up. I agree with the poster who mentioned Factitious Disorder Imposed on another (FDIA), the new name for Munchausens by Proxy. The parents with this disorder enjoy the attention they get from medical staff and other people.

She should have been pleased that he had eaten some food that he seemed to enjoy and didn't feel embarrassed about eating in front of you and your family, but she was actually pissed off with you instead of being grateful.

You didn't overstep but I bet your mum won't be asking you to look after him again.

I imagine it must be difficult for your mother if your brother does things with you that he won’t do with her. She’s probably put a lot of emotional investment and worry into to him and she’s bound to feel a bit defensive. Your brother is lucky to have you.

Do you ever get an opportunity to speak openly with him? I think it's time to check if there's something worrying going on.

You haven’t overstepped at all and your mum’s reaction to you taking your brother out and him managing to eat something however small, is worrying. My son doesn’t have ARFID but is autistic and has a learning delay. If he’s out with someone else and comes home telling us he’s had a great day and tried something new we are delighted.

Have they ever had social services involvement? Either way, I think your brother needs someone to advocate for him or at least check in on him. It’s such a shame he’s not in any kind of educational setting as this would probably really help him far more than being at home- his world is so small.

I think the feeding tube will have helped your DB cope with his anxiety and other difficulties to an improved level compared to when he was very malnourished. I think your mum probably hasn’t realised this.

When someone is very underweight or malnourished it does impact your cognitive function.

This. Absolutely this.

You really need to talk to social services, it doesn’t sound like your mum is caring for your brother properly and is basically keeping him a prisoner. I’m not saying she has bad intentions but they both need some support to improve his quality of life.

This does sound worrying. It is brilliant progress for him to eat those things and that he felt comfortable enough to do so.
Mum needs to follow his lead. She could be stuck in the mindset of he’s always been like this and she is averse to change. Or his eating habits doesn’t correlate with what she sees/wants/tells people and doctors about and that has made her feel a loss of control. Perhaps it’s because this positive outcome didn’t occur on her watch.
Worth a sensible conversation to celebrate the little wins but she might not like what you have to say.
Good luck and well done to your brother.

I worry about reporting to SS as it will be obvious it’s from me considering he’s not in education, he only sees a dietitian though thats not very often any more, I don’t think any other medical professionals are involved. I think CAMHS were briefly but they said they couldn’t do anything

I did suggest her getting him into college as there’s SEN courses etc but she immediately said no.

She doesn’t go anywhere with him minus appointments. He spends most of his time on his ipad or switch etc and she says he’s too much to take out but he isn’t and tbh he never was even when he was younger as in he never ran off or anything like that, though he was always in a SN pushchair so he didn’t really ever get chance to try

This was my first thought too

It’s easy for us us to say your mum is holding him back when you only took him out for a short period of time.
Could you have him more?

Your mum is his safe space and he might have been trying to please you perhaps masked in front of you/your kids.

Or you could be spot on.
Have you seem more instances that have led you to this conclusion?

This would be my advice too.

I have an autistic/ADHD 21 year old with ARFIDS and I’m afraid I spend a lot of time begging the GP, Social services and even my MP to get involved in providing her with the care and support that she needs because it is not in her or my (nor the family’s) best interest to have her utterly dependent upon me. With the ND/ED your brother needs a social care assessment (under 18 I believe it’s a transitional/child assessment) and this triggers a multi agency team who are equipped with specialists in ND, eating disorders etc. Much better than CAMHS (who were useless) and if you contact social services you can emphasise the potential co-dependency issue and the fact that your mother may actually need a MH assessment herself.

Your brother cannot begin to manage, or hope to recover from, ARFIDs or any of the other negative behaviours if there is no external intervention here.

Maybe it will be obvious it’s you, but the fact that there are no professionals or other people checking in on him or even aware of him really makes him very vulnerable.

Can you talk to his GP practice and explain that you don’t want to rock the boat but ask if they could request an LD social worker for him? Also he should be entitled to an LD health check from the GP every year but the LD registers that the GPs hold aren’t always accurate so he might be missed if they haven’t added him to it.

I would have him more but it’s up to my mum whether she’d agree or not

I’m not sure what SS can do if DM says it’s fine but I would def try to speak to someone knowledgeable about the situation -your DM will not always be around