ASD and Appointee

w06

Hi OP, sorry for the delay, I foudn a few interesting websites about social prescribing. It seems to mean different things in different areas, it definitely looks worth giving a try though. It's to find ways to help you integrate into society and be less isolated.

a few links that might help explain:

this one is someone talking, and also a transcript of what they're saying, about what they do as a social prescriber http://listen.health.org.uk/stories/leisa-batkin/?gclid=EAIaIQobChMI5suqzvLk2AIV4b3tCh0XWgAGEAAYAyAAEgK9E_D_BwE

and a link to a newspaper article from a few years ago giving an example of what it could be like https://www.theguardian.com/society/2013/nov/05/social-prescribing-fishing-group-doctor-ordered

If you google social prescribing nhs followed by your county or town it might show you in more detail what to expect.

You're doing really well op, you, and your Nan, should be proud of you

Ames

I agree with W02 but to get the best results you need to find out the name of your local CCG and google social prescribing and that name.

When the crisis team contacted me last year they just googled and told me I had to ask to be referred to a programme that was for a different part of my city. What's available can be very, very localised.

MyLonelyWorld

Thank you to everyone who has replied to my thread. I'm sorry I didn't reply earlier, but I haven't got much to say right now as things are pretty stagnant.

From the looks of things, my mother has been completely removed as my appointee. My ESA was transferred over to my bank details earlier in the month (pretty sure I've already mentioned this), and I received a letter from the DWP regarding my PIP banking details this afternoon.

This morning I had my appointment with the social prescriber, which I was accompanied by my Nan and uncle. My Nan and uncle did most of the talking, with adding additional information when necessary. Housing options and available support were discussed, and they called Social Services to see about getting me bumped up the list for a social worker. They also offered to send me a information pack about a course I can do in regards to maintaining a property, learning how to cook basic meals, and other stuff like that - which looks like a good opportunity on paper, but I tend to avoid any scenarios where there will be any social interactions with others.

For the time being, the waiting game continues for social services to assign me a social worker.

deannatrois asked about ASD groups. I've only ever contacted (via email) a local Autistic Support Group about how to participate in their monthly meetings, but I never received a reply. Other than that, no I haven't.

Ames

That all sounds quite positive. Hopefully social services won't keep you waiting much longer.

I totally understand about social situations. I have mental health problems and since last summer I've been making a big effort to get out and mix with people more. Before that I could easily go a couple of months without a conversation with anyone other than medical people, now it's only usually a few weeks and I'm trying to change that to a few days. It's really, really hard. But I know that in the long run it'll be worth it.

The course sounds like it will be very, very useful to you. Other people on the course will have their own problems, so they won't be judging you, and the person running it will know about your autism so they can keep an eye on things. If you don't feel like talking to people then you don't have to.

MyLonelyWorld

I had to send off a form about my PIP address and bank account last week. How long does it normally take to get my first payment?

w06

As a rule of thumb it tends to take about a week for things to get to the right desk at the DWP, and then a week to ten days for their letters to get to you. And so it might take anything from a week to a month I'd say. You shouldn't lose any money though, just takes a while for them to sort things out.

[Deleted User]

Re local groups/support services. I can't guarantee there are services in your area but maybe you could try this webpage (run by National Autistic Society) and see if anything useful is available in your area http://www.autism.org.uk/directory.aspx

I am thinking of something like my Kent Autistic Trust that not only has monthly meetings (which I don't attend) but will also provide advice and support when there are issues.

I now have a autism specialist social worker and although on the surface I seem extremely able .., there are quite a few things I have been having issues with, without that support I probably would not be here now.

They helped me when I was nearly homeless (in a private rental, LL wanted to sell) supported me when in emergency housing for 18 months (bit of an up and down period, council were awful, rode roughshod over me, without the support and social workers saying hey, you can't do that I would have been lost).

They helped me enormously when I was assigned a permanent property (again council broke quite a few rules, put me in a very bad position). Because of them I have had an OT assessment and am having a shower put in the bathroom and a very battered kitchen replaced with one with some adaptations (things the council on their own refused to do). They are going to be attending tomorrow's PIP face to face with me (I have no doubt at all their support will be essential).

They are also providing me with a personal assistant to help with some things I find difficult and attend meetings with me when I probably would just clam up rather than speaking.

It has taken a few months to get social services involved, but now they are, their support is unbelievable. But make sure you get a support worker you can work with.

MyLonelyWorld

@deannatrois I don't remember if I mentioned it in this thread, but I previously emailed an ASD support group here in Wolverhampton about attending their monthly meetings but never heard anything back from them. I can always try sending them another email and hope to get a reply this time.

How long did it take for you to get the initial assessment from social services? On Thursday it'll have been 7 weeks since they first called back after I requested an assessment. And just over 2 weeks since the Social Prescriber called them to see about bumping me up 'the list'. I know I may sound a bit impatient and I appreciate/understand that other people require an assessment a lot faster than me, but the unknowingness is causing me some anxiety.

[Deleted User]

Oh dear. Erm I lived in Wolverhampton and moved because of the lack of support, unfortunately. There is Autism West Midlands but that's in Birmingham.

It might be worthwhile phoning MIND and seeing if they know of any organisations that might help.https://www.mind.org.uk/information-support/helplines/

There is an Autism Spectrum Support Group in Wolverhampton but they seem to be focused on monthly meetings only.

You can also phone the National Autistic Society for advice.

I am sorry, I know this is rather disappointing. I hope the other organisations I have mentioned can give you some contacts that will help.

I completely understand your feelings about the lack of movement with social services. I felt the same. But I am afraid all you can do is keep contacting them, reminding them that your need is urgent. Doing this did seem to help me, although I still waited at least two months, probably longer. I am just about to get some PA help. Very grateful but it has taken some months lol. Just the way things are nowadays I am afraid.

MyLonelyWorld

Hi, I'm still alive.

I went to the Wolverhampton ASD support group, but it wasn't my cup of tea. I'm not sure if I'll go again at this point, but at least I tried.

I finally received my PIP last week, which was backdated to January. Like with my ESA, it's probably going to be a lot of effort to get back the payments of mom that were paid to her during the early stages of this process.

I've finally received a call back from Social Services. Someone is coming to visit me next Wednesday (7th).