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.
Turning your phone OFF was a mistake. It's what I do for days and weeks at a time, when I'm under stress and having a breakdown.
With these people you have to make multiple attempts to get communication and information. So try again and again to get into contact with the social workers, managers and landlords. And explain to them your problems with moving , giving notice etc. And keep your phone on.
My phone has been on all the time since then, but they still don't contact me. . Also, I don't mean to sound rude, but my social worker does not understand me and my condition much at all and doesn't even understand English very well. I told her that I need help with some personal care, but she said she doesn't think it is a need.
Hello Bethy, I hope you are feeling a bit better today. It sounds like you need to keep on at the social worker and the housing manager. Not much longer now and you'll be in your new place. Once there you will be able to concentrate on yourself.
Bethy, do you have physical disabilities?
My posts keep disappearing from this thread. It's really annoying.
I have my PIP assessment this Friday which I am feeling very stressed about. My mum will be going with me. I just hope that I can remember to answer the questions in the correct way with a lot of detail.
I am also stressed and upset with my social worker and the manager of the new accommodation. My social worker either doesn't respond, or she only answers part of what I have asked. Like today for example, I sent her a message asking her why she didn't turn up for a meeting that we had arranged to alter my care plan, and I asked her about helping me to arrange a van to move my furniture. She only said that she didn't think that we had a meeting on Friday. She arranged it!.
Also, I called the manager this afternoon to ask if she received my message about moving and needing help arranging the van. She said she did receive it, but she would need to call me back because an incident had happened in the home. There is always some reason why they can't respond. What if they don't respond when I live there too?
It's very urgent as I haven't been able to leave my flat and I haven't been eating very much. My mum is very concerned too.
Alice, I also have dyspraxia as well as Autism, and a problem with my pincer grip.
I expect you will be glad when Friday is out of the way. It's good that your Mum is going with you. If I have learnt anything about dealing with various authorities it is that you have to keep on at them to get anything done. I expect the manager will be much more helpful when you are actually living there. I have to admit your social worker sounds a bit useless, but I also expect that with cutbacks to budgets she has a very full case load. I hope you start to feel more settled soon, Graham.
There are a few things that I am worried about regarding the move next week. I don't like the way a couple of staff have spoken to one of the ladies that lives there, and one of the female members of staff doesn't speak much and just kept texting on her mobile phone. And one of the male members of staff made me uncomfortable.
Things aren't going very well in my supported accommodation at the moment. I keep feeling like I want to run away as the staff have keys to open the door anytime they like and I feel that it invades my privacy and it gives me meltdowns. I was on a private phone call this evening and they still walked in and kept asking me questions. I am also expected to tell them every time I go out, every time I get back home, and every time a visitor comes in and leaves. If I go out and I don't contact the staff, they can call the police. I don't feel like I can relax at all. If I have the tv on or I am listening to music, I am on edge in case they walk in, and I don't even feel like I can go to sleep in the day time if I want to.
Hi, Bethy. That sounds really awful. I'm really particular about my privacy, too - I absolutely have to have my "sanctuary" sometimes, otherwise I completely burn out, and unwanted intrusions can cause melt-downs.
Unless there are specific clauses in your Care Plan which override it (unlikely unless there is a Deprivation of Liberty decision), you have the right to expect reasonable privacy and to socialise as you please under article 8 of the Human Rights Act 1988. This may be overidden in extreme circumstances (for example, good reason to suspect you have had an accident etc.), but otherwise, intrusions into your privacy which you have not agreed to contravene these rights.
In the first instance, you should bring this up with the management of the housing and/or your social worker, in order to ensure that the housing and support workers are acting as outlined in the Care Plan. If this doesn't get you anywhere, you may find this web page for the Equality and Human Rights commission useful - there are contact details at the bottom for the Equality Advisory and Support Service, who may be able to help you if your right to privacy continues to be contravened.