Hello - Please help me to represent the Autistic community

I did not know that I can get an advocate to speak on my behalf when having to speak on the phone.

How can I get an advocate to speak on my behalf when having to speak on the phone?

How can I get a proof of posting, which to your knowledge is free?

Hello DragonCat16,

OMG! I was reading your post and I felt like I wrote it myself. I experience exactly the same. You are not alone!

The biggest problem I have had in my dealing with DWP is phones.

I feel much more than uncomfortable speaking on the phone or initiating a phone conversation.

I am also perfectly capable of filling forms myself.

I also feel that using phones for me is torture.

I am also very uncomfortable speaking on the phone, and I believe that the DWP should be more sensitive to people with a disability that makes phone calls very difficult, given that they deal with disabled people all the time.

I have to say that as a disabled person who has difficulty using the phone, I also have been penalized. I have had a lot of situations when I have not been able to do something because I could not call.

DragonCat16 said:

If you go to the Jobcentre and try to ask them about the ESA application, they will tell you to phone the DWP!!!!!

I have experienced exactly the same! You can imagine how awful I felt. I instantly knew I will not be able to do this and, therefore, solve the problem.

DragonCat16 said:

This is the twenty-first century. There are websites and email, and even text messages, but they force people to use the phone to contact them.

I completely agree with this.

DragonCat16 said:

And don't even get me started on how completely degrading the ESA50 form is.

I have experienced the same feeling. It is degrading to do the forms.

You can get an advocate to speak on your behave when having to speak on the phone. When you post things to places like the job centre always get a proof of posting, which to my knowledge is free. I rarely ever use the phone, if it was for something like the job centre, I either get an advocate or somebody else to phone for me or I accept that it’s not worth the hassle (to me) and don’t apply for the benefit. I’m sorry you had such a hard time with them, I’ve  always had a good experience but then I’m very clear with them about what I will and will not do and get people to step in for me with the things I can’t do. For example, they never phone me because they know I won’t answer and I never phone them and they always back date things etc if I send a letter or whatever. It might be wise for you to get an advocate to support you or take over any dealings with them on your behave as clearly this is not something you can deal with. It helps me a lot having someone to do the things I can’t, such as phone calls. Because you’ve made that phone call they might conclude that yes, you find it very uncomfortable and difficult and it might cause meltdowns etc, but you did it where as I just won’t use the phone with them as it stresses me out so they don’t try to get me to use the phone anymore, they usually send text messages. If you’re clear and consistent with them they will help but maybe you need the support of an advocate as well. 

The biggest problem I have had in my dealing with DWP is that they provide no other means of contacting them than by phone. They can process an application for ESA properly only if it is done by phone. I really don't feel comfortable speaking on the phone or initiating a phone conversation, and, besides, it seems completely stupid to answer someone's questions over the phone so that they can fill in a form for you, a form which you are perfectly capable of filling in yourself. With a form as long as the ESA form, it would probably take over an hour of that kind of torture.

Because they can't be bothered to set up their website so people can fill in the ESA form for themselves online, the only other way to apply for ESA is by sending in the paper version of the form. After I sent my form in, using a first class stamp so it would arrive that much sooner, they claimed they hadn't received my form until nearly a month after I sent it. Therefore, I was denied several weeks of benefits to which I was entitled, and the delay was caused by someone there who just didn't bother to open the post.

When I complained about this, first the supervisor admitted that they had actually received my form several days before they claimed that they had, but still over three weeks after I sent in the form. The supervisor said that I should have phoned to make my application for the ESA. I told him that I am very uncomfortable speaking on the phone, and that the DWP should be more sensitive to people with a disability that makes phone calls very difficult, given that they deal with disabled people all the time.

Another thing that happened with my application is that they sent the letters and forms to my previous address (it was perfectly clear on the form that it was my previous address and not my current one) so basically a bunch of strangers now know my personal details and that I applied for benefits. I complained about that as a breach of my privacy, not to mention the law, and they didn't bother doing anything about it. When I complained about that, the same supervisor told me that that wouldn't have happened if I had applied over the phone. It also wouldn't have happened if people employed by the DWP could read. Why do they ask for the previous address anyway? I moved away from there three years ago, so the fact that I lived there has no bearing whatsoever on my current benefits application.

Then, to add insult to injury, they finally sent some of the forms, but not all of the information I needed, to my correct address. They didn't bother telling me when the form was due, and dated the deadline from when they first sent the forms to the incorrect address!!!! So I had no chance of getting the form in on time, given how long it takes for them to open their post, but they sent a letter threatening not to give me benefits at all if I didn't return the form on time.

So, basically, as a disabled person who has difficulty using the phone, I was triply penalised for not using the phone to apply for the ESA benefit. That is the very definition of disability discrimination. Perpetrated by a government agency intended to cater to disabled people.

It says on the written documentation that people that have applied for the ESA can go to the Jobcentre to communicate regarding their ESA application (for example, if someone needs more time to return the ESA50 form, as I did, because it had originally been sent to the incorrect address), but that isn't the case. If you go to the Jobcentre and try to ask them about the ESA application, they will tell you to phone the DWP!!!!!

Then I was told I would have to have a face-to-face assessment. They booked the appointment at the same time as a medical appointment I already had booked. So, of course, the only way to contact them is by phone. Again. Did I mention I feel very uncomfortable using the phone to contact people? I even put it on my ESA50 form. No doubt, the fact that I managed to phone in order to change my appointment will be counted against me, even though I had no choice but to phone them, as they offer absolutely no other way to contact them.

This is the twenty-first century. There are websites and email, and even text messages, but they force people to use the phone to contact them. If that weren't bad enough, it takes about half an hour for them to finally answer, and all that time, I am paying for the call. I've had no income since September, and I have to pay to call the DWP so that I can get benefits. RIdiculous.

And don't even get me started on how completely degrading the ESA50 form is.

I hope that gives you some examples of possible training topics, Angie.

I have disclosed to both employers that I've worked with since last July.

The first employer told me that I was too slow at my work and needed to speed up, or I wouldn't survive the busy period at Christmas. He started setting targets to get a certain amount of work done by a certain time, and I repeatedly failed at meeting them. The job was a physical one and I have motor difficulties which really came to light in this scenario. I quit because I knew I wouldn't get quicker, and didn't want to work somewhere for any longer where I knew I was inadequate at the job and was being pushed to work faster.

I then got another job where I was trained in one branch, and loved it. Everyone was wonderful to me. After my training, I was moved to another store and very badly bullied. I begged to be transferred back to the first branch and eventually I was allowed, with a lot of support from the manager who worked hard to get me back. Again, I was very happy and settled until I was accused of theft last week for an action that I had never been told wasn't allowed. I'm now under investigation and will potentially lose this job, but even if I keep it I cannot feel comfortable having seen how I've been treated like a thief. I'm a very good, moral person and anyone that knows me well would know that I'd never steal, but I've been accused by those I trusted and I'm now being treated like a criminal and left for day after day to stress without knowing the next steps.

I hated the stress of running my own business. I want a regular, secure income. But having tried three different working environments since last summer, I'm beginning to regret closing my business down.

Financial insecurity would be big problem. Earnings can be insecure, which a big problem for me as a spectrum folk.

Access to Work sounds good but I have had many problems with them as well. Do remember that they are a part of the Department for Work and Pensions.

I wish I could become self-employed.

I would love to be alone most of the time.

I would be so happy to be alone.

Financial insecurity would be big problem.

Thank you that is very kind of you and I accept the virtual hug.  

I am very lucky that my Boss is very understanding, he has been very open to what I have told him I need with regards to reasonable adjustments.  I tried to work full-time initially but I just couldn't do it.  

I'm really sorry to hear that.  Self employment is a great way for us to avoid the barriers but it is a huge responsibility and in addition your earnings can be insecure, which isn't good for spectrum folk.  I'm really sad to hear working for an employer is not going well.  Can I ask did you disclose to your employer? And are they disability confident?

I think you are doing an admirable job. You are very suited to doing this as your chosen career, straight away I feel you are understanding. Your words and how you come across is so reassuring. Please carry on and I hope you get many coming forward with confidence that you really do Understand how we feel and how we struggle.

yes you are autistic but you are able to take your new found knowledge and put it to good use.

Please look after yourself, with the highs come the lows, take itvsteady and don’t over burdenbyourself. Wevall try so hard to help but often we burn out in the process, we care so much and hate seeing suffering, we need tobtakevacstep back frombtime to time and allow others to step in.

May I offer you an aspie virtual Hug? You can refuse if you wish. I will not be at all offended, ( )

I'd be happy to help if I can be of any use. I relatively recently gave up self-employment, running my own business, after years, to enter the world of work again. My re-entry into the working world has not gone well at all.

Yeah, I think we have s tendency to think faster than we can actually deliver. I’m sure you’ll set it up at the right time. 

I’ve read through the info and I went on a few other pages. It’s certainly inspired me to get moving. Realising there is support out there is very encouraging. I think they may be able to help me. It might be a combination of this and the new enterprise scheme, who already passed my business plan. I would of course need to speak to them, to get further details, when I’m ready, but for now, it’s given me the push that I needed. As I said, I don’t often need a lot of help but I do need some. 

Tjank you for that, I really appreciate it, it’s made a huge difference. Best of luck with your survey and all your plans. I think you’re going to be great in this role. It’s refreshing and encouraging. Thank you. 

No, I hope to in the future.  I was too scared, trying to finish Uni.  I had financial issues too, my husband lost his job, so I had to find one.  

Did you set up the public interest company? 

I'll warn you its not the most accessible information.  I still needed to ring them when I was looking into setting up a Community Interest Company

I’ve got an official diagnosis anyway, but I didn’t know this, thank you, I’ll read through the info and get back to you if there’s anything I don’t understand or if I have any questions. Thank you. I need human and tech support, this sounds great. I’m going to check it out now, thank you. 

Thank you for posting BlueRay.  

With regard to setting up your own business, I understand I have executive functioning issues.  You are entitled to supply to Access to Work for support

Hello Angie, this sounds very promising. I’m a 50 year old who was diagnosed last year and will be embarking on the masters in autism followed by a PhD and will be following in your footsteps to some degree. This is great news. While attending the job centre is challenging for me, I have had nothing but full support from them. I was freaking out on my first appointment when they told me I had to look for jobs. I told them straight, no way, I must be in the wrong place. The woman, who has worked with autistic people in a previous role, brought the manager of the job centre over to reassure me that if I got a sick note, I wouldn’t have to look for a job. I also said that when I’m ready for work, I also refuse to be pushed into any old job. Again, the manager reassured me that that would never happen. She told me that things have moved on and that they have their own dedicated team who work specifically with helping disabled people included autistic people, to find the right work for them.

I’m self employed so don’t need their help to find work. I do need help in setting up my own business, but as far as I’m aware, they don’t have the facilities to help me with that. They put me forward for the enterprise scheme or something, which didn’t really provide the help I was looking for. For me, I need specific support to get my business up and running. This is not because of my inability to do an excellent job, but because of executive functioning etc. I need to be taken through the process step by step. With me, a little help goes a long long way and often, the help I need is something an nt would be able to do easily so they are often able to spot things and help me in a big way by spotting the small things I’m missing. But they will only be able to spot those things if they treat me with total unconditional positive regard. By recognising and acknowledging my autism but seeing beyond that. I need to feel safe enough with that person to ensure that I’ll open up with them and be honest enough to let them know what I can and can’t do. It’s like this information can only be teased out of me over a series of sessions. They need to get to know me first and on every step of that journey I will test out a little more each time if my last time opening up was successful. I can’t be rushed. That just increases my stress levels and shuts me down, then I’m no good for nothing. I need to know that they genuinely want to help me. They have to be passionate about their job to help people and not just tick boxes. If they give me all this, I will be a success and they can showcase me to show how they can help others. I will give back more than they give me but the support I need is specific. I need a balance of them bringing out of me what is dying to jump out, with some gentle guidance that doesn’t set me up to fail. The worker needs to know that it might be a case of trial and error and that sometimes we might get it wrong, and that’s ok. I need positive reassurance but that reassurance will go a long way. I have to take baby steps, without feeling like I’m a baby. I need support but I need empowering as well. I know that there are many autistic people out there with incredible, unusual and dying gifts and talents. They simply need to be matched in a way that they can use their gifts in a way that enriches their lives. Working and being independent in a way that only money can provide, is a vital element of our overall level of health and wellbeing. We are meaningful people. What we do has to have meaning for us in a way that we can understand. The support we need is out of the box but it can be surprisingly easy to provide if we are treated with dignity and respect and not like some number they need to get off their books. We are not looking to fill positions but to fulfill our own needs by using what we have, what we’re good at, what we enjoy and what we can build our lives around. Work takes central position in most people’s lives. If it’s going to work for an autistic person it has to hold meaning for them. Most of us are undemanding, we are happy with simple lives, we are happy with our special interests and at being the best we can at anything we take on, that has meaning to us. For me, I have to have confidence in the person who’s helping me, I need to draw on their confidence until I find my feet. I don’t know if I’ll get the help I need but one way or another I have to, because I need some help. I’m not useless or hopeless by any stretch of the imagination but my natural tendencies to not want to wash and dress and do the normal daily routines, when meaning or purpose is lacking, makes it a struggle to work out the steps I need to take to get me back into work etc. I’m currently coming out of a burn out which is a crucial point for intervention, to get the help I never had as a kid growing up with undiagnosed autism. Just because I’ve been in burnout, doesn’t mean I can suddenly do the things I’ve struggled with all my life, such as eating, social contact, obsessions etc etc. It means I can work out ways of working with these things but I also want to move forwards in my life. To build the business I know I’m capable of making a success.

If I leave my house, for me to be comfortable and navigate all that that entails and to avoid a meltdown, it has to be for a reason that’s meaningful to me, otherwise, it’s barely worth the effort. I will feel like I’m leaving my house just to please somebody else and that’s not sustainable, that’s why many of us break down, round about the mid life point. We hit a point and can’t go on anymore. For me, it’s all about meaning, taking care of my sensory needs, my need for solitude, regularity and feeling safe in the world. Leaving my house is otherwise when the battle begins. My own thoughts will have me crucified before I even open the door so already my senses are on high alert. What I can cope with one day can floor me another. But these are things that nobody sees and especially because I’m so good with the mask. It will barely leave me if I don’t feel safe. It’s my armour, my protection, but it’s not me. There’s more to me than that. That’s my battle attire. I need to feel safe to move beyond that.

Thank you I appreciate it.  [Post edited by Moderators]