DVLA U-turns on autism disclosure policy after uproar

The Driver and Vehicle Licensing Agency (DVLA) has reversed its decision to force people with autism to disclose their diagnosis, even if it does not affect their driving.
The DVLA apologised and amended its advice after the Guardian reported on its surprise change in policy on Sunday. But despite the change, many people with autism said they were still confused and angered.
“In our attempt to clarify the advice for drivers with autism spectrum disorders we’ve clearly muddied the waters and we’re very sorry for that,” said a DVLA spokesperson. “We have amended the advice on GOV.UK for both drivers and medical professionals which make it clear that a driver who has an autism spectrum disorder only need tell us if their condition could affect their driving.”

Spectrum Art Award

The 2nd Spectrum Art Award is open for submissions from Tuesday, 5th March – 31st May 2019.

Rather than an overall ‘winner’, the award will recognise the achievements of 5 selected finalists equally – each winning a cash award of £5,000, together with a bespoke package of support and mentoring and an opportunity to show their work publicly in a dedicated exhibition in the spring of 2020 (TBA).

Established in 2017, the Spectrum Art Award is a unique, critically acclaimed national competition, created to celebrate the creative excellence of artists on the autistic spectrum – providing a vital bridge between the art world and artists with autism. It is open to all UK adults on the autistic spectrum (aged 18 and above) and for work in any medium; from animation to sculpture – as well as the myriad of art forms in between. Submission is free and can be found via the charity website: www.thespectrumartaward.com.

The first Spectrum Art Award achieved more than we could have hoped for. Culminating with a critically acclaimed exhibition in 2018 at the prestigious Saatchi Gallery, London, it generated coverage including T.V, national press and specialist art journals, reaching a global audience in excess of 374 million.Spectrum is the South West’s leading charity for autism services. It provides residential care for both adults and children, education and domiciliary care services for people with Autistic Spectrum Disorders. Autism is a lifelong condition that affects how a person relates to other people and the world around them; while all people with autism share certain difficulties, their condition will affect them in different ways.

The Spectrum Art Prize has evolved from the charity’s long association with the arts and has been conceived as a platform for artists with autism to have their work exhibited at the same level as any other artist, without barriers or prejudices.

Autistica claims invisible link between autism & anorexia

New research from the charity Autistica finds that as many as one in five women with anorexia are autistic.  But autistic people explain how their food obsession is not about a desire to be slimmer.

“I don’t eat when I feel everything is going wrong. It’s about losing control” James Sinclair

When James Sinclair eats a Full English, he starts off eating the beans. Then he polishes off the tomatoes, mushrooms and sausage, ending with the toast and bacon together.

It’s just the way he’s always done it.

If one of these items is missing from the plate, he’ll not eat the meal at all. Even if he’s hungry.

It’s this rigid relationship with food that lead to the 25-year-old, who has high-functioning autism, being hospitalised for an eating disorder.

Indeed, new research from the charity Autistica reveals that as many as one in five women with anorexia are autistic. It says the NHS must change the way it assesses eating disorders to take account of a link with autism, to give more appropriate treatment.

James’s story suggests that men on the autistic spectrum may also be impacted in this way.

Routines feel ‘safe’

The world can seem a very unpredictable and confusing place to autistic people, and developing routines can help make them feel safe.

James, who was diagnosed as autistic aged seven, would get agitated if his usual route to school was altered.

“I got used to looking out of the window and seeing the same lampposts and houses and if that changed suddenly it caused me anxiety. It would just build and build in my stomach.”

[The 25-year-old marketing executive writes a blog called ‘Autistic & Unapologetic’]

He then found a similar tension forming about food, and he began skipping lunch at school if he wasn’t sure what he’d be served, fibbing to the teachers that he was allergic to various foods to avoid eating.

James, from Heaton, Greater Manchester, was 13 when his worried family sought help after he became ‘skin and bones’. “My parents had split up and me and my mum had to move to another house which was causing me a lot of anxiety as so much would be different and I just stopped eating,” he explained.

“For me, it’s not about wanting to lose weight or about how I look. I don’t eat when I feel everything is going wrong. It’s about losing control.”

Being force fed made me worse

After two months, he was detained in a secure unit for people with eating disorders and tube fed.

“It just made me worse, people trying to force me to eat made me feel less in control,” he said. “I then became bulimic and vomited my food as it made me feel more in control and I kept escaping,” he said.

James recovered but says that even now, he struggles with food. “Every morning I eat a yoghurt, then a banana and some granola with milk, in that order,” he said. “If I don’t have one of those items in then I eat nothing.”

But thankfully, the marketing executive says he has a great support network which helps him.

“I have my girlfriend Caz, who I live with, my family and even my boss will remind me to eat when I forget, or accommodate me having the food I want,” he said.

“I also find better ways of coping when it feels things are going wrong. Recently, our house move has been delayed but I’m focusing on the holiday I have booked later this year which I know won’t change.”

Calorie counting obsession

Anorexia sufferers are often thought of as having a distorted image of their bodies, thinking they are fat even when they are underweight.

But the BBC Victoria Derbyshire programme spoke to one woman, Sophie McInnes, who feels her anorexia had developed not from issues surrounding body image or weight but because she had developed rules for herself about how many calories she could eat.

She spent time in an eating disorder unit after her weight got so low she needed a wheelchair. It was only several years later that she was diagnosed with autism.

The 24-year-old believes that had the link been spotted sooner, it would have helped her recovery. “It’s just taken away a big chunk of my life so far, and I want to move on,” she said.

Call for new health guidelines

Researchers have for some time now suggested that clinicians should consider a potential crossover between the obsessive, systematising and self-focused traits of autistic spectrum and those of anorexia.

Autistica is calling for new guidelines from the National Institute for Health and Clinical Excellence (NICE) to take into account the link between the two conditions.

NICE guidelines on eating disorders do not contain any mention of autism.

Autistica’s director of science, Dr James Cusack, pointed to three separate studies carried out in 2015 and 2017 that suggested 15 per cent of women with anorexia also have autism.

“We also need more NHS services involved in research both informing studies and carrying out trials in eating-disorder care settings,” Dr Cusack told the BBC.

The news site reported that NICE acknowledged in a statement that autism needed to be taken into account with regards to eating disorders. However, it insists there is currently “very little” evidence on whether treatment needs to be modified as a result.

Read more at: https://inews.co.uk/news/real-life/autism-spectrum-disorder-asd-anorexia-link-charity-food-obsession-slimmer/

 

 

Next steps for the APPGA inquiry into the Autism Act

As you may know, this year marks the 10th anniversary of the Autism Act, as well as the next milestone for reviewing the autism strategy. To mark this significant moment, the APPGA is holding an inquiry that will consider progress made in the last 10 years, as well as exploring how services and support can be further improved for autistic people and their families. In order to build our understanding of what has and has not changed since the Act came into force, we are consulting with autistic people and their families, as well as holding evidence sessions in Parliament and organising focus groups with professionals and commissioners.

Public survey

As part of our inquiry, we are running a survey on our website, which seeks to find out more about autistic adults’, children’s and families’ views and experiences of support and services. This survey will also shed light on people’s awareness of the Autism Act and the legal duties in place. The results from this survey will be part of the evidence going into a report, which will be published in September of this year and will set out recommendations to Government about what improvements need to be made for both autistic adults and children.

The survey will be open until Sunday 7 April, and we would like as many autistic people and their families to share their views so we can build a reflective understanding of peoples’ experiences across England, Northern Ireland, Wales and Scotland. While the Autism Act only covers England, we do also want to capture views from across the nations as this will help us in our broader campaigning work.

Evidence sessions
We will also be holding evidence sessions in Parliament to gather more evidence over the coming months. The sessions will be based on six themes (please see the bottom of this email for more information) and will take on a select committee hearing format. They will involve panellists (including MPs, professionals and people with lived experience) posing questions to witnesses who will have expertise and experience in relevant to the topic. Each session will explore two themes, which will each last an hour. Our overall aim is to find out more about what the key issues are for autistic adults, children and young people as well as their families and to also use this as the basis for the report we will be writing later this year.

There will also be an opportunity for people to act as observers to the sessions. Unfortunately, there will be a limited number of spaces available for each session, so we will only be able to book places for you on a first come, first serve basis.

What you can do to help us:
1. We would be very grateful if you would be able to fill out the survey and encourage others to fill it out. This will allow the APPGA to have a clearer picture of autistic people’s needs and what more the Government needs to do. We have provided the suggested tweet below in case you would like to share this with your networks:
The All Party Parliamentary Group on Autism is holding an inquiry into support for autistic people as part of the 10th anniversary of the Autism Act. If you or your family member is autistic, they want to hear about your experiences and views about what needs to change across the UK. Share your views here https://www.smartsurvey.co.uk/s/OB5OB/ ”

2. If you would like to attend any of our evidence sessions as an observer, please email appga@nas.org.uk, letting us know which session you would like to attend, and we will send you more information. Please note there are limited spaces and we will allocate these on a first come, first serve basis.

Please don’t hesitate to get in touch if you have any questions.