I have a meeting with my social worker and her manager today about what kind of care I need. I don't have an advocate at the moment or anyone else to support me, so I will be alone. I don't feel up to speaking to anyone so I have written everything down. I feel as though my social worker doesn't listen to me and she is hardly ever there and i have been left without any care at all for two weeks. I don't feel comfortable with any of the care companies that she has sent to my flat. They don't prompt me with anything, don't help much and don't seem to know much about autism. One member of staff just sat on the couch the whole time writing in the file and when I asked her to help me once, she just stood there looking at me not doing anything and when I had a meltdown once, she just ignored me
I was with the police and paramedics last night due to suicidal thoughts and having panic attacks over a hospital procedure that I have to have next Monday as abnormal cells have been found in my cervix and I have a virus. It might be my exes fault and his ex girlfriends fault as his exes cheated on him but he stayed with them and then was with me. I feel that I was vulnerable being intimate with him and if I wasn't living alone, it wouldn't have happened. I am trying to get in to supported housing for people with Autism at the moment. I had only recently got back on speaking terms with my mum and grandmother too but when I was distressed last night, my mum kept putting the phone down. She was also supposed to come and see me but she didn't and I had a meltdown. My family don't understand autism.as I was diagnosed late, three years ago at the age of 31, and they have never read about the condition. My flat hasn't been cleaned for weeks, I can't cook and haven't been eating much and I can't get out of the flat without having someone else with me. My mum has problems with her heart and blood pressure and has to be monitored every two weeks and monitors herself at home. My dad lives further away, about forty five minutes away. He is much older than my mum and has been ill himself. He had a mini stroke last year and my stepmother is very ill too. My mum also takes care of my grandmother. I feel like I have no where to turn. I would like to write a letter to my MP. The national Autistic Society sent me a very helpful email with places to contact but I need help contacting them. I wish I had friends with autism that I knew in person.
Hi Bethy. I wondered how you'd been getting on. I think it's good that the meeting is happening and that you have written things down in preparation.
The checkup sounds pretty normal and nothing to worry about. Is the virus you refer to HPV? That's very common (I think about a third of people have it), and there's now a vaccine against it. I hope the health professionals are friendly and understand, like the dentists. Maybe you could get other help with your anxiety about your health, though? Have you ever had Cognitive Behaviour Therapy adapted for autism?
I wonder if the social workers can explain things about your autism to your family? As you mention, it sounds like an advocate might also be helpful.
I'm in tears. I am still not being listened to. They won't increase my hours yet, they won't apply for supported housing for me and they were putting me down. They left me in my flat being a mess. I am so depressed and anxious.
I am so depressed at the moment. I had a meltdown and cried during the meeting yesterday. I was exhausted afterwards and slept for a long time. I would like to try the CBT for autism . How can I get that?. I don't know how to solve everything else. I feel like I am stuck in a situation that I can't get out of. I don't like this flat or the area. I might not have enough money to move to another council flat or private flat. I suppose I could do a flat swap, but I'm not sure if I could move in to any flat or just another council one. I could move in to one that's partly or fully furnished.
I viewed a supported living home yesterday. There are people with Autism and other disabilities living there. There are self contained flats there with a bathroom, bedroom and kitchen, and a communal lounge downstairs with staff in house all the time. The flat there is smaller than the one I am in now. I just hope they offer the right support. I have to have an assessment there next week to see if everything is suitable.
Could anyone help me with choosing to decide where to live and also with what questions they might ask me at the assessment?. I also need to fill in a form for PIP benefits. Also, my social worker told my support worker off as the support worker was getting a bit of her own shopping when it was supposed to be my time for shopping and they have never helped me to clean and tidy up, which they are supposed to do.
Other than the supported flat being smaller, what did you think of it? Could you imagine living there?
Sorry, I don't know what questions they might ask, although I expect they will ask about the type of support you need.
Your social worker was right to tell the support worker off.
As what support you need. There should be a get together with you, your family, your social worker or representative. The support company management. To agree what help and support you need. The hours, number of people, do you need physical help with personal care, meals, financial advice, going out etc etc.
The care they provide should be specially tailored to you and your circumstances.
Also. If you live in supported housing.
There should be an agreed support plan in place for you. Cleaning and tidying and who does it should be in that plan. The support worker should stick to the plan as far as reasonably possible.
You should also have a say whether the support worker is male, female or either.
Keep in mind that it takes time for both you and the support workers to get used to each other, what needs to be done and how to do it and develop trust and communication.
Lots of complaints are being made today about the company who come to my flat at the moment to so called support me. The one who came round today emptied my bin in to my kitchen sink where dishes are which gave me a meltdown. They also sit on my couch doing nothing and the one who came round today even said that she wanted to " rest her tired old legs" and said that they can't help much. It's supposed to be work and they get paid for doing that??. I have been really upset all day and I am exhausted. My social worker said she hopes i pass the assessment on Monday at the supported home and that it will be suitable. Still, I have to give up my own home because I am struggling so much here. Three hours for shopping and other tasks were wasted today. I haven't got any energy left. It's all draining me.
I’m sorry I haven’t replied sooner, I didn’t receive a notification that you had posted again.
First of all good luck with your assessment at the supported living home. I don’t know what sort of questions they will ask, but I assume they will be about your struggles with daily tasks, and how much support you need. Will your social worker be with you?
With regards to filling out a PIP form, again I would ask your social worker to help you with that. There is some advice about how to fill the form in here and here. You can also get free help in filling out the form from your local Citizens Advice and from your local Mind.
The supervisor said that the support worker had said that she went to the supermarket with me today but that is a lie. She just sat on the couch for almost three hours and all she did was empty my bin in the kitchen sink, which gave me a meltdown as it's where food and dishes go in. I'm so frustrated that I am left in this situation. I need help making phone calls to people too, such as citizens advice, mind, etc. I'm also nervous in case the staff in the supported home can't offer much of the right support too.
Your support worker is obviously not doing their job properly, If you get your supported living accommodation that should help solve that problem. If your social worker can’t help you with your PIP form I should ask them about getting an advocate. You can find out what an advocate does here.
Thanks for the advice on the PIP form and an advocate. Do you think it sounds silly having a meltdown over the support worker emptying the water from my bin in to the sink?.
No, I don't think it's silly. If someone who was supposed to be helping me emptied a bin into my sink I'd certainly have something to say about it. I hope the supported housing visit goes well for you.
I don't think it's silly either, and if you have a meltdown ho have a meltdown. Most people I know have sort of invisible hygiene lines in their homes, although you hardly ever think about them because you're used to them. Like not using the same cloth to clean the kitchen as the bathroom. The bin is usually the dirtiest thing, dirtier than the floor, which is of course dirtier than food surfaces, so you'd think it would be emptied into an outdoor bin or down an outside drain. If someone comes in and breaks those lines... well I know what my mum would say.
I hope you find good supported accommodation where people can get to know you properly. I think you probably want people around you who can help you with practical tasks, like making phone calls, in your own way, rather than doing things their way without asking. Pretty much what I want too!
Hi Bethy, I've just seen this. I would have had a mega meltdown over this, and I have to tell you my NT husband would have flipped as well.
My mum went with me to our local library on Monday and we filled in the pip form with a lady who works there. She was very helpful. It was very stressful though. We were there for two hours!. I've had lots of panic attacks and meltdowns this week. I also called the hospital on Monday. They said my biopsy results were in and that they would send a letter, but I still haven't received it. They said it would take up to six weeks to get the results and it's been almost seven weeks now.
Hello Bethy, I'm glad to hear you managed to get your PIP form filled in. Usually when it comes to biopsy results, no news is good news. I hope you've recovered from Monday's exertions. All the best. Graham.
I'm still very worried about moving and about my hospital results. I called the hospital last Monday. They said the results are in and that they would send a letter. I still haven't received a letter. I also called again yesterday and asked for them to ring me back. They haven't yet. And I am still worried about the PIP assessment. Also, things about my last relationship with my ex boyfriend still affect me too. We broke up 6 months ago. He is NT. He didn't really understand my autism and used to get angry with me. I also didnt understand some of his behaviour.
Hi Bethy, I hope your results arrive soon and allay your worries. There's not much you can do about your PIP assessment, try not to worry. Easier said than done, I know. Do you have any female friends that you talk about ex-boyfriend's behaviour with. If not, see if you can explain here what is troubling you, if you feel comfortable doing that. I really hope you get your results soon. Graham.
I can't live with having autism anymore and with my family not being understanding and supportive any more. It's too much.
Bethy, What has happened? I've felt like that before, let me know what is wrong.
Let me know if you're okay Bethy