Campaign DVD Transcript

Mark Lever, Chief Executive (The National Autistic Society): Welcome to the National Autistic Society ‘Don’t Write Me Off’ campaign DVD. Most people want to work, and most people want to live financially independent lives. It’s no different for adults with autism. Yet the reality is very different. Only 15% of adults with autism are in full-time paid employment, and yet we know that many, many more can work, and want to work. Of the people that we’ve spoken to, over half have spent times in their lives when they haven’t had employment, and they haven’t had the financial support from benefits that they deserve. This is just not acceptable, and this has to change. This campaign is all about trying to make that change happen. You’re going to see a number of personal stories in this DVD. Personal stories that reflect the great frustration and anxiety felt by people with autism in battling with the system to get the financial support that they deserve, and to get the support they need to get into paid employment. We hope that after seeing and hearing their stories, you will support our ‘Don’t Write Me Off’ campaign.

Carole: I decided to apply on his behalf, because I was supporting him financially, 100%. We did it online to start with, which you are allowed to do, but then they made him phone. Which is one of the difficulties that he has, with communication. So they made him phone them, and then they started the process all over again answering the same questions, which were on the website. Which also said that he had Asperger’s, or high-functioning autism, but they didn’t take that into account. They made him talk on the phone, they wouldn’t speak to me.

Gail: There were lots of hurdles that we came across, because obviously they wouldn’t deal with me, because Stefan’s technically an adult, and Stefan had to apply.

Peter: The forms weren’t easy.

Ann: No. They were-, yes.

Peter: It was just a case of-, I had to literally hand it over to my mum and say, ‘Look, I’m struggling with this.’ So-,

Ben: We made a phone call didn’t we on Friday? For you to change your benefits to the ESA benefit system, yes.

Gail: I ended up phoning four times to speak, and eventually I got a different advisor on the other side of the phone, who never even asked to speak to Stefan. When I explained the situation, she just spoke to me. Although Stefan was there at the side of me, she didn’t ask. So I think it depends on the person who you get on the other side of the phone.

Dinesh: The truth of it is, I don’t think they really understand me that well. I still feel that there’s a lot that needs to be done, in terms of more training around autism, and obviously how it affects the other person.

Thomas: I did ask to see the disability employment advisor, but again I don’t think he has much understanding of autism and Asperger’s syndrome, the support that I need, or indeed any idea of the training and support schemes on offer.

Ben: Once I asked them on the phone a couple of times if they had specific support for people on the autism spectrum.

Gabriel: No.

Ben: Which is what they said, yes, exactly.

Chris: Someone trained to listen and talk to the people with autism making a claim.

Tom: It would be a lot easier if I just saw one person, because you never know what the other person will be like. Sometimes they’re nice, sometimes they’re not. You could establish a relationship. I mean, yes, they could help you. They’d know exactly what your condition was, and without repeating the same information over and over again.

Craig: It’s not a physical disability, and it’s not something minor, people with autism will really slip through the net.

Paula: I had problems with the medical examination that I had to go to. The doctor that examined me ignored a seven-page report from a psychiatrist, and he also misinterpreted a lot of my answers. So the reports that he produced were untrue and full of inconsistencies. Then the decision maker still chose to believe them over better evidence that was provided. So then I was refused benefit and had to go to tribunal.

Carole: There wasn’t even a letter saying they’d stopped benefit. They just kept writing asking for a medical certificate. Now I’d rung them, and I had written to them and said, ‘We’ve sent you a diagnosis letter, what more do you want?’ They didn’t reply. There’s nothing on a personal level. There should be someone there personally attending to it, rather than standard letters, because all we get are standard letters.

Chris: Being too sick to work, we said no to that, so I didn’t actually see why a certificate was necessary at all.

Gail: If you had to go Jobcentre Plus by yourself, which we’ve talked about, when you’ve got there, what sort of person would you like to see?

Stefan: A person we’ve seen before.

Gail: A person you’ve seen before.

Stefan: Peter Booth.

Gail: Yes, he’s called Peter. Why would you want to see him?

Stefan: I don’t know.

Gail: Not because he’s already seen you before, and he knows about yourself? Yes?

Tom: They don’t seem like they care much about me as a person, they just wanted to-, it’s just paperwork to them, they don’t care about each individual’s case much. They just want to get it over and done with. They make a lot of mistakes.

Thomas: What support I would need would be a dedicated counsellor who is-, who takes an especial interest in a caseload of clients, including myself.

Ann: The issue about him working one day a week at this big brand supermarket is that, actually for Peter, to spend one day appearing normal is quite difficult, quite stressful. We’ve been with employment advisors who think that he should be able to do that five days a week.

Gail: She’s also been in a scheme for about two years now called the Supported Employment Project, which runs down at Meadowhall. That’s for young people with autistic spectrum disorders, where they will do work placements with them and support them in work placements. So that’s where Stefan’s been doing her work experience, just for a couple of hours a week. So hopefully getting her ready for work.

Paula: The help that-, the support that I was provided with is too inflexible to work for Asperger’s, because it’s important to me that my working environment is suitable for me. Quiet and peaceful, and not a lot of people around. You can’t use those criteria to search for a placement, so the process just wasn’t going to work.

Dinesh: When people think the word disability, they could think-, I mean if you take it in the workplace, people might think, you know, some people might not be able to do it, but they need to look at the other side and think, ‘Maybe if we give that person a chance, they can prove them-,’ People who are employers who proved themselves wrong that yes, a disabled person can work and they should have rights to do anything.

Ben: We run our own club night, don’t we? We run PigPen, which is a club night. You choose all the acts off the Internet with your communication device. The great thing is, recently we had a meeting with this organisation called Attitude is Everything, and they said you’re the first club promoter that they’ve come across with your challenges, and on the autism spectrum.

Craig: I believe that there’s a long way to go really, to be honest. Yes, I believe it is good that the department for work pensions are classing autism as a disability, however there’s a lot more training that needs to go into it.

Mark Lever: The people that you’ve just seen, and the stories that you’ve heard, are unfortunately far too common. Many, many people with autism suffer the same frustrations and anxieties every day in trying to access the support that they need. Support that they need to access employment, support that they need to access the benefits they need to be able to live financially independently. This has to change. We believe that people with autism deserve to live fulfilled lives. We believe that people with autism deserve the support to reach their full potential. We also believe that there are simple solutions that the Government can put in place to make this happen. Without these changes, we would be writing off people with autism, and that’s just not acceptable. We’re calling on the Government to take action, and we’re asking you to support our campaign.

Please visit autism.org.uk/dontwritemeoff. Thank you.