Autism and communication

@SchizOttie i have tried that they get a list of topics given to them that i like to talk about but it makes no difference if they dont care about those topics they wont even try to learn about them and will shut down all conversation about them. they often say stuff like "im not into that" or " i dont know much about that" and then it is like well great what am i supposed to do now. and then it just goes back to the excruciating small talk.

If you choose a Support worker yourself, then apps like MABLE OR HIRE-UP (from what I have been told) often give information on hobbies of a Support worker...

hi @Eden1919 real talk i'm a little raw about support workers as i had one quit today - via text - and wish me all the best for my future - i had a "meltdown" so maybe i'm at fault, but they were regularly showing up late and ghosting and i told them i'd become unwell now and stopped sleeping. They were doing admin stuff like helping me set up meals for today and they didn't do it and i didn't have a meal today. I told them i wasn't happy with this and they said it wans't working between us and it's best for both of us that they no longer work for me.

I feel bad because I "trained " them and tried to be kind to have shifts that suited their lifestyle as they had another job and of course they just ghost at the first challenge.

If it's okay to just give my own opinion, a worker who says "i'm not into that" etc about your hobbies - is failing at the job.

I've only had one good worker, but even though she didn't love reading, she made a picnic for us and bought reading materials so i would be able to read.

Theyre meant to facilitate our interests. They never do, though 😞

i would also hate small talk with them, its such a waste of time. I don't find them helpful much. It makes me feel more isolated.
I'm sorry you are told off about your own interests or pushed back when u try and have a deep conversation. I feel like deep and open conversation is very therapeutic and important, and small talk can be pretty triggering for many ppl

@SchizOttie I can’t really use those services in my area

@EternalFlower i am sorry about your experience that support worker sounds terrible it really is hard to find a good one I have also had lots of bad experiences and it is hard cause you are constantly torn between getting your needs met and having someone do the job properly cause if you say no then there is no one to do the job at all so often I will settle or just tolerate bad stuff because I need things done like I can’t go to the shops myself and so I need someone to go for me and if they don’t I don’t eat for the day so it is hard.

Hi @Appleblossom i remember ur work at ur physio. U were helping them really kindly. I hope ur ok after ending the relationship. That sounds horrendous how they spoke to u. I wast there but did u feel it was ableism?

@Eden1919 i really relate. my (lovely and nice) psychiatrist said to me with the ndis it's a common problem that we accept bad deals because we are desperate

there really are only a hnadful of competent workers around, they get booked up I guess, so we have to hold onto them

I had one that we had a disagreement and things got a bit heated and i thought she wouldn't come bac as i had a meltodwn but a few months later i apologised and we now working really well

i realised i had to apologise coz i made a mistake and still felt bad that i reacted that way - i have sometimes been too intense and they leave, but other times they have used me and made me feel bad. I know they're human and it's a hard job but i have found it challenging to find ppl who are suitable to help me

they don't realise like whenn u said u don't have food if u dont come that these tasks are central to our recovery - but as its just shift work and a gig economy they see it as just one availibile shift for them to take or leave

thats not fair on us, as we go through so much to wait for them, expect them and hope for the level of care we need .

i do get angry and hurt and soemtimes feel i dont even want to engage the whole scheme anymore

im sorry the support workers aern't meeting u where you're at. it is hard to keep trying and hoping for good care when the standard so consistently falls short

Yes @EternalFlower I suspect it is ableism. The manager said that she was like that and needed to tone it down with others maybe.

So I am probably extremely hard working and resilient, and manage the hierarchy of needs for myself and son regarding food, clothing, finances and shelter. I get a little help cleaning and gardening but it is just a bit. I tried to get social needs met for us, but that has been slow in coming, however our social connections are growing.

However, ableism and other prejudice or discrimination is woven into my family story from childhood, Eg., my father’s death. I have witnessed it again and again before they made a name for it.

take care all

@Eden1919 @SchizOttie @DogMan79 @unreal