Using someone else's diagnosis for financial gain?

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Hi all!

Sorry to bother you guys but I can't seem to understand the conveniences versus the negative impacts behind such initiatives and quite frankly I am appalled that members of my family (let alone anyone) would even lay a thought on using my diagnosis for their benefit.

To give you a detailed description of the situation, my mum was talking to my Aunty (in-law) over the phone. My Aunty informed my mum that there is a particular service available for people with disabilities where a carer/companion can help out within the house as well as doing shopping (and probably other activities) with the client. I wasn't given much of a description as to what the service involves as my sister only just informed me and she said "it's hard to describe". My sister happened to be present throughout the phone call, hence she got to voice her opinion on the idea.

My sister told my Aunty, "I don't think Ruby will like it", to which she responded "Stuff Ruby. This is for your mum". After the phone call, my mum and sister had a talk about it and my mum concluded that it wouldn't be fair on me. Recently, as my mum and I were arguing about Centrelink and finances she told me that my Aunty informed her of some package that would help her out financially but she didn't go into detail about it and I wasn't sure if I wanted to know (I wish I didn't know now). She said "This could have really helped me out, but I didn't go through with it because I didn't want you thinking I was betraying your trust". She seemed rather bitter about it, as she would have been paid for me to have this carer/companion.

Now, I am very thankful that my mum didn't take this opportunity despite the fact that she would benefit from it. I am also grateful that my sister understands my distraught for the idea and stood up for me.

I think my major areas of concern are;
- the idea of using a label (that is very often stigmatised, misunderstood and underestimated) for ones' financial gain regardless of the impact towards the person in question
- the belief that an individual with high functioning autism is incompetent or does not possess the right to be independent, competent and free of making their own decisions
- the assumption that an individual with high functioning autism doesn't hold strong opinions/feelings against being infantilised and will at least be fine with such arrangements being made without their consent
- the fact that my family know (or should know) that I am very competent and
- A young adult should be be developing more independence (which I am doing) and my mental health seems to be increasing, hence the idea of going the opposite direction has no logic at all, from my perspective
- My mum is totally aware of the fact that I want as much independence as one can have, living with their parents (I plan to avoid renting a property as I feel it will be more expensive in the long run and I may not cope financially, hence my goal is to grow a deposit in order to purchase a property, eventually)

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YOU MAY STOP READING HERE, IF IT'S GETTING TOO MUCH
Just thought some background information might help you guys form an opinion!
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My mum is in her fifties and is a single parent and my sister and I are both adults. She works 22 hrs a week as a Preschool Assistant and she has chosen to have Wednesdays off as she needs the break. She often smokes throughout the day and evening, which is highly expensive but she claims that she is depressed, and that smoking is her only option until she sorts out her mental health. She has very often complained about her financial situation and how hard parenting is without support in general since her and my dad split up when we were 9 & 7 years old.

As much as my mum validates my intelligence and independence, I feel that she always doubts me and talks me into taking the easy route, rather than the option that is consistent with my abilities and values. I very often won't accept help from my mum as I highly value my independence, the idea that she may think I'm incompetent hurts and I don't want to be a burden on her by giving her more workload. As it turns out, me wanting to be independent is also burden on her as she wants to be my parent and she is saddened by the fact that neither of us need her or go to her for advice. She feels that I don't want her to be involved in my life and is very hurt and depressed by this. I have since been trying to improve our relationship and talk to her more and it's going okay.

My mum believes that I go to such drastic lengths to be independent (eg. not accepting lifts, purchasing my own groceries ect.) and that I need to let people help sometimes. I on the other hand believe that assistance, for the most part needs to be consented to and that I have no obligation to accept help if I don't want it/ don't feel that it is within my best interest. Assistance is a last resort for me (not just for the sake of an easier lifestyle/situation) and I feel that people should be encouraged to or at least have the right to spread their wings and fly.

I will struggle/suffer if I have to for my independence, but that is something else I'm trying to work on. Throughout school I had assistants who specifically worked with me and I found that very challenging to deal with (the aide would sit next to me in the classroom and tell me what to do much of the time). I feel that it was unnecessary for the most part as I was able to get high grades (just with extra time for tests and exams) in high school but I do admit that the very early stages of schooling would have been difficult without one as I hadn't developed the foundations and behavioural skills. I have been informed that public schools consistently get paid by the government every time a child with a diagnosis gets funded for an aide and that staff often make out that the student is less capable than they actually are in order to give the child as many hours with an aide as possible. That, to me is very deceiving to the child.

Despite the fact that this isn't happening, the knowledge that my family were considering it and that my Aunty didn't care about my feelings was enough to make me cry (which I don't do often). I also feel threatened and extremely hurt in instances where I feel people may see me as stupid or incompetent. I am consistently trying to prove people that I am as competent as others my age despite my diagnosis but when I feel that my levels of competency/intelligence are being dismissed, it's like an arrow has been shot into my heart (at the worst). I start having negative thoughts about me being infantilised in primary school (which I am generally at peace with now, except for these setbacks)

NOW TO THE POINT

I'm sure all of you have differing opinions, but I feel that the idea of me having a carer for my mum's financial gain is too extreme, and should not even be a consideration. I don't get why my mum and Aunty didn't care more about how this could benefit or hinder me, but instead they were focusing on the financial gain. Money can be gained/preserved in more reasonable ways that aren't traumatic and that don't diminish my self-worth and values.

So, do you guys have any idea as to how I can make it up to mum and how we can come up with a reasonable compromise?
Should I just pay more board whether she wants me to or not in order to better the situation?
I'm sure nothing can be nearly as bad as being infantilised again!

Thank you guys so much
Sorry it's so long!

I'm not sure I completely understand, but a few thoughts:

First, I definitely get that you don't want to be used in this way and that it would feel bad to know your family's talking about it. I'm sorry it's bringing up hard feelings.

Second, if your mom's having mental health (and it sounds like money?) problems, then I can understand how it would feel hard for her to turn down a source of income and/or help around the house. Even if she's feeling "bitter" about it, at least she did the right thing by you.

Maybe you could tell your mom that you really appreciate that she didn't go through with this plan since she knew it's not what you would want, and that it means a lot to you that she didn't do it? (I mean, you shouldn't <i>have</i> to do this, but if one of your goals is getting closer to your mom it might help. And it sounds like it would be honest to say this since based on your description.) If you haven't already done this, you could also tell her explicitly about why independence feels so important to you and why it hurts to have it questioned.

You could also express to her that you know things are hard for her too right now. (Sometimes I try to solve my girlfriend's problems and she has to remind me she just wants me to be supportive and validating.)

You could also ask her more about the money situation and see if there's ways to help either with money or around the house, if you have the capacity for that. (Rather than just paying more without discussing it with her.)

Since I don't know you or her I have no idea how difficult any of that will be, so this all may be useless. In any case, I wish you good luck!

One more thought:

I sometimes have a really hard time when people I like/love are annoyed with me or unhappy. Like it feels like something is WRONG because they're feeling bad, and if it's directed at me I feel like I did something wrong and I'm a bad person, etc.. I'm working on reminding myself that other people's feelings have many causes and the part that relates to me is usually just a small piece. And someone can be annoyed without it meaning that I need to (or even can) fix something. Just wanted to say it may be relevant in your situation to remind yourself that you're not responsible for your mom's feelings (whatever they may be).