i'm just going to write this how it comes out - usually i plan what i write (and definitely what i say) so that it makes sense. this is just freeflow
i discovered i was ASD three years ago. my life was falling apart (again) and i was desperate to understand why. this time, my life was falling apart badly, worse than it had yet. rock bottom. i asked agencies and social services for help. when i found out i was autistic i asked for autistic specific support.
they required an assessment. i was assessed, wrongly, twice. third try and one year later, an ASD diagnosis.
but no permanent help has been forthcoming.
i live independently by default, i think sometimes. i immigrated to new zealand with my then wife. we divorced. i now give her way more credit than i used to for the things she did for me - paying bills, paying rent, organising, admin, talking on the phone for me, tradies. all these things, it turns out, i cannot do. it makes my life so hard, and yet they are the very skills required to survive in the world.
i have no family, so no one obligated to do all this for me
when my life fell apart i asked a friend to help me. she became my volunteer support person. after a year (the beginning of this year), she walked out. at that stage i had been in shut down for six months, because she kept asking me to do things i could not do, and seemed to not understand i could not do them. i have no idea why she walked out. i asked repeatedly, she would not tell me. would not speak to me.
coming out of shut down i went to the local autism nz branch for help. one of the co-ordinators refused to help me (i dont know why, again)
the other said it was her job to help me (and the other woman's), and she began finding a permanent support person for me. jumping through agency hoops again. only this time she did the jumping. i have no understanding of what is required. i cannot follow instructions, cannot think sequentially (i think in dimensions), cannot fill in forms, read mail, talk on the phone.
initially the woman was great. she said she was going to be my temporary support person (see above for all i need help with) and would transition into permanent support.
when i told her that my volunteer support person had walked out and never returned and i had clearly made her angry and had no idea why, and that this often happened with people, she told me that they didnt live autism like she did (she has autistic family members) so they would not know. nevertheless, i specifically told her (made a point of it because communication is difficult for me and i spent some time thinking it through to get exactly what i wanted to say) that if i did anything to make her angry, she would tell me. i was fine with her getting angry, but just to please tell me what i was doing so that i could change it or manage it (if it was an autie thing i could not change)
things were good, i thought, because when i told her i couldnt do something (i made poster drawings of what i could not do and a way around it / how i needed it last year - about 40 of them - to communicate them) she listened and worked around it. i felt she understood
she stopped mentioning a permanent support person in july. and things changed. she started wanting me to do things i could not do. she told me information over the phone (i have auditory processing disorder and dont understand phone calls at all), she stopped coming round when trades people came to fix the flat/unit i live in (i cannot answer their questions). she stopped reading situations and told me important information when i was sensorially (sp?) overwhelmed.
and then she told me something vital. i dont know what it is because i have no way of processing it. and she got furious with me because i did something counter to what she told me that violated her sense of self, crossed her boundaries. fair enough. i accept that and have accepted responsibility that i did that (without knowing what i did) and apologised. i spend my life my self being violated by the actions of others (non-autistic people who do not understand), i do not want to do it to others.
i wrote her an email explaining what i think happened - that it was a serious miscommunication and how it probably happened (not blaming her at all) and apologised again.
she will not accept my apology, will not tell me what i did (or perhaps she is telling me, just not in a way i understand), and has withdrawn her temporary support, leaving me with nothing. initially she agreed to continue filling in benefit forms for me, so i continue to get money. within days of this all exploding i had a benefit form to be filled in and she filled it in two weeks ago
i got another form last week, it took a week for me to get hold of her to take the forms to her, she agreed yesterday to do them, i get to her office today, and she refuses.
i assume she will now do nothing whatsoever
and i dont want her to. i dont want this drama and conditional support based on things i cannot do. i just want support that is stable - someone's job, not someone's favour to me.
but i have a form to fill in and without it my money stops. i cannot fill in the form.
i'm furious. i'm raging.
at least i know why people get so angry with me - but not because she told me. knowing i am autistic and (ironically, because i know this is a big fail for many auties) having fabulous post-diagnostic support, has enabled to me understand a lot more about how i work.
i dont know what to do. when i saw the woman this morning, i finally got her to write something of what she was saying down for me (this enables me to process it). so i have a written line that says someone will contact me about the form soon.
what happens if before that "soon" is the deadline for the form and my money is stopped? thats a massive debt of bounced debit orders (rent) i dont know how to cancel or reinstate and i cannot pay (its a vicious cycle, there will never be enough money in my bank account to cover the debt, so the orders will continue to bounce, creating more debt)
i just want permament support. what is so wrong with this???????????? five hours a week of someone helping me do the executive function stuff i cant and my life would stabilise. no more chaos. ten hours and i could transform my life.
i'm raging and i am furious and i just need to tell people who are going to understand. i dont know what to do
thank you for listening
01 Nov 2017, 9:36 pm
just being able to vent to people who would understand helped me enormously
