Hello - Please help me to represent the Autistic community

[Post has been removed by Moderators for breaking community rules. This post did not have permission to undertake research - Requests for research study subjects and surveys need to be directed to research@nas.org.uk for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.]

Holly - Moderator

  • Dear  and community members, 

    I have responded with this same message to you in your new thread as well as here. 

    Firstly, I am sorry that I am only responding to you now, and I hope the response here helps to clear up the reasons behind the post being deleted. We would like you to know that we have spoken to Ian about the permission given, and although he agrees that he suggested the community as a place to seek information, there has unfortunately been a miscommunication and misunderstanding about what the community can offer in regards to research, formal or informal. 

    The community rules have always stated that any posts that are for research purposes will be edited or deleted without warning. The reason for this is so that the community remains a place just for the community users - to chat and converse - and not to be part of research for others to use in any capacity. This applies to the National Autistic Society as well. We will not conduct research here, as the community is not here for that reason, and therefore we do not want to encourage others using it for research either. 

    We appreciate that everyone on the community are able to make the choice of how much information they give in their posts, and we want to create a safe, open space, but occasionally we have to edit or delete posts that we deem to have broken the rules. This is a wonderful community to be part of, because you chat, support and advise each other amazingly. As Moderators we try our best to not intrude, but also be as helpful as we can, when we can. I am sorry if you felt on this occasion and on others that the wrong decision was made.  

  • It would be nice if people had any recourse for the mistakes the DWP make, but they have the power so they do what they want.

    It would be not only nice but fair.

  • I find it extremely difficult to meet strangers. I do everything to avoid unknown people.

    My communication with strangers is awful. I am almost always extremely anxious.

    I almost never go to the post office workers/cashiers.

    If I cannot do a self-service checkout then I do not do it at all.

    I do not think that proof is posting is going to work for me.

    However, an advocate would be very helpful to me.

  • You’re welcome. My support worker has been great. The well being team is for people who don’t quite meet the criteria for social work support or for people who would rather not go down that route and it helps prevent the situation getting worse. 

  • I had proof that I posted the thing in mid December and the supervisor didn't care. He said they only care about when they claim to have received it, which was several weeks after it was sent. I don't think they'd even care if I had paid for delivery confirmation. It would be nice if people had any recourse for the mistakes the DWP make, but they have the power so they do what they want.

    Thanks for the info about the support worker.

  • It doesn’t matter what they care about, if you have proof of posting, they cannot deny that. And if you had friends, they would be more than happy to make all of your phone calls for you, that’s what friends are for. 

    You can get access to an advocate via your local social services office or you can google them. I googled them and I found one which I could contact via email. It was slightly out of my area but it was the only one I could email and they agreed to work with me anyway. They took a little over a week but they got a guy to come to my house. He helped me and supported me with getting the pip form and then he completed it on my behalf. I don’t pay him a penny, the service is free. He is concentrating on my benefits applications and my support worker, who was arranged via the job centre, makes all my phone calls, opens letters etc and deals with letters. When my work coach said something about not accepting my sick note, I refused to listen to another word she said and I simply got my support worker to liaise with the job centre to sort it out on my behalf. I don’t deal with applying for benefits. I could. I’m an excellent social worker and mental health practitioner and would do this thing for my clients, but when it comes to doing that stuff for myself, especially when I’m not well, it stresses me out and currently, I’m reducing my stress not adding to it so I get somebody else to do it for me. I don’t do anything that stresses me out as I’m in burnout and therefore I need less stress not more, just now, so I hand stuff over to other people to complete on my behalf. And I don’t pay anybody a penny. I will give back in other ways though. For example, when I’m ready, the guy who is helping me with the benefits, is going to train me up to do what he does so that I can then also go to peoples houses and support them, free of charge. I will do this in my free time. If the DWP makes things more difficult, I simply match them by making it easier, for example, I simply get some help and get somebody to act on my behalf. I keep things simple, I don’t complicate them. Oh, my autism psychiatrist helps me out as well. He said he’ll write a letter to the DWP as he can see how stressed out the whole benefits system makes me. So I get help from wherever I can, I’m not as fussy as you, I’ll let family, friends, anybody help me but because I’m self isolating just now, family and friends aren’t the best help for me so I get advocates, my gp, psychiatrist, support worker, anybody really. I now attend an autism group but I didn’t know about it until the first day I had to attend the job centre for universal credit. I started to have a meltdown in town, on my way there, so I walked into the nearest shop, and just said, to whoever was there, I’m having a meltdown, I’m on my way to the job centre, I’m autistic, I just need to stand inside your shop for a minute to calm down. It turned out the woman who owned the shop, who was in the shop at the time, has a son who is autistic, who was also in the shop at the time. I didn’t really see anyone at first, her or him (there was nobody else there) because I was freaking out. But as I got talking to them, I calmed down and they told me about the weekly autism group which I now go to most weeks. So I’m not fussy, I’ll take my help wherever I can get it. I’ll go and knock on some random house door if I have to and just say I need some help. 

  • To get proof of posting, you simply tell the post office worker/cashier that you want proof of posting. They put a sticker on your letter and give you the other half which has the date the letter was posted then they put the letter in a bag ready to be taken to the sorting office. This is free. If you want the recipient to sign for the letter then that costs money. There are several options but proof of posting is free from all post offices in the U.K. 

    You can get an advocate, free of charge, to speak and act on your behalf by either contacting your local social services and asking for contact details of a local independent advocacy service, preferable one that you can contact via email or other similar method. Or you can google advocacy services in your local area. You can also ask your local social services office if they have a well being team and if they do, you can ask for a referral. You just need to tell them how you’re struggling and it doesn’t usually take more than a week to get assigned to a worker. Advocates are brilliant but I have found the well being officer to be of great help to me. You’re entitled to make use of both of these services, free of charge. In fact, social services and local government offices want you to use these services. They seem them as prevention as opposed to cause, which is far cheaper for them. The well being officers are great and have a vast amount of knowledge and experience of opportunities etc in the local area. 

  • Thank you, yes I had intended talking about accessibility your comment is greatly appreciated

  • ...This is what the Quote button does, now. Yikes.

  • I got permission of Ian Dale please check with him

  • Post has been removed by Moderators for breaking community rules. This post did not have permission to undertake research - Requests for research study subjects and surveys need to be directed to research@nas.org.uk for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.]
  • A beautiful but serious poem by Lilysnape.

    A talented young lady who asked for help but was not noticed by the powers that be,

    This poem is From a year ago.

    posted in the hope that the moderators who are currently focused on this thread may just see it and actually try to help this young lady.

    They have stopped any potential exchange between  Indigoangie and members.so may as well focus on more NAS specific areas. 

    ———————————————-

    Why bother making friends?

    LilySnape
    Offline
    LilySnape
    over 1 year ago.


    Why bother making friends I say

    When i know I'm going to lose them in a day

    What's the point, what does it matter

    I say, sitting there getting fatter

    I don't know what I'm doing wrong

    I never seem to keep them for long

    I try my best to make them glad

    But it always ends up with me feeling sad

    You trample on my heart like a wild bear

    You just don't seem to care

    Why, why I sigh

    So in the end I don't even try

    I sit there silently, only wanting to talk to myself or less

    And give other people a rest

    So now you know when you say

    Do you want to play?

    Why I say nay.

    r=33.

    v=188.

    s=35.

    06:03:2018,

    23:29.

  • Evening DC, nice to see you. Thank you I had to say it how I feel it. 

    That young lady has been in here over a year, she has had difficult times, she needs support, I am not sure but she came here before she was sixteen, one member said she shouldn’t post on here as she wasn’t allowed because the rules said no children under sixteen. She was needing help with her gender identity. I must go back and find her threads, she wrote a very insightful poem. I will find it and post it up here I think, maybe the moderators  will be more likely to see her name whilst poking about.

    ()

  • Hear Hear! (In support of what LoneWarrior says.)

    ...Also... this type of "Editing" and "Deletion" is certainly a new thing to see... and I have only been here 4 / 5 Months so far.

  • This is to the moderator Holly who saw fit to delete the title of this thread, would it be possible for you to look at a few other threads? There is one quite current which is about a young girl called Lily snape. About eleven months ago  she came here looking for help, none of us noticed her thread, none of us replied, a lot saw it, but for whatever reason were unable to assist her then. Could you  spend more time helping those that really need it rather than stop those seeking to help and support autism  in a pro active manner.?

    The title of the thread I am talking about  is titled.  “Discrimination”.

    please see if you can give her some support, or just ask her to phone the office during working hours, but be aware they are receiving a huge volume of  callers so you May have to keep calling until you get through. Thatvshouldvsettle any individual withvsutism as we love phoning strangers tobtalk about our fears and inner struggles.!

    I happen to think as adults we can pretty much decide wether we talk about our issues or not. Well if we think for one moment it will be heard by someone who truly understands, maybe Indigoangie?

  • I'm perfectly capable of filling in a form or sending an email, but, for some reason, they need to make it so it's as difficult for people like me as it possibly can be.

    I am in the same situation and face the same reality.

    If you would like a friend, I can be your friend. Unfortunately, I cannot help you to speak on the phone on your behalf and help you that way.

    I really know how desperate and sad I feel in those situation. For me it is awful to realize that someone else faces the same misery.

  • Thank you so much for willing to help me!

    I have noticed your posts in the forum. They are often helpful to me.

    Unfortunately, sometimes they are really long but I am extremely limited in time everywhere. I do not have sometimes time to read them properly. I wish I had time.

    I am already spread too thin across so many things.

  • If I think of anything or come accross anything California I’ll let you know. 

  • WIth all due respect to the moderator who deleted the post, I don't think this was really a research study or a survey. The OP just wanted an idea of training topics. I doubt she intended to publish or publicise the results in any way, and the people in this forum are free to provide information or not as they see fit, so data protection and research ethics considerations do not apply here.

  • Who am I supposed to get to speak on the phone on my behalf? I have no friends, and even if I did, I certainly wouldn't keep any of them if I asked them to make my phone calls for me.

    They don't care about proof of posting. They only care about when they receive the form. In my case they were counting that as the the day they got around to opening the envelope, which was over a week after they claimed to receive it, which was in turn more than two weeks after they must have actually received it. I could have walked the envelope to them in the time it apparently took the post to get to them.

    I'm not sure who you are suggesting I get as an advocate. As I said, I don't have any friends, and I'm certainly not going to pay someone to help me so that I can get the tiny little amount they say I can live on but which actually doesn't even cover my monthly home payment.

    I could deal with applying for benefits if they made it less difficult for people with disabilities, who are, after all, the people for whom benefits are intended. I'm perfectly capable of filling in a form or sending an email, but, for some reason, they need to make it so it's as difficult for people like me as it possibly can be.