Your Autism Magazine - August 2016 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 50 – NO 3 • AUTUMN 2016

Bonus content online! Find out more inside

POET PETER STREET Being autistic in a war zone

Together for ten years

The story of Winston and his carer David

COUNTDOWN CHAMPION DYLAN

I’ve got a job now!

WHAT IS MINDFULNESS? WHY I LOVE WEIGHTLIFTING PREPARING YOUR CHILD FOR WHEN YOU’RE GONE

I love my job

How Tanya’s autism helps her support others

Autumn 2016 EDITOR Eleanor Wheeler T H E N AT I O N A L AU T I S T I C S O C I E T Y HEAD OFFICE The National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk

A DV E RT I S I N G Zinc Media 13th Floor, Portland House Bressenden Place London SW1E 5BH Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@zincmedia.com www.zincmedia.com

SUBSCRIPTIONS Only available to members of The National Autistic Society C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 membership@nas.org.uk DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Wyndeham Grange Tel: 01273 592244 F RO N T C OV E R Photography by Sam Robinson Photography Ltd sam-robinson.com The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine 2016 Autumn Vol 50, No 3 The National Autistic Society ISSN 2055-0413 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of The National Autistic Society. In the interest of providing the widest possible range of information to readers, we may include details of some of the many approaches to autism now available. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that our charity endorses or supports the groups or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.

hope you are all having a lovely summer. This issue we’re focusing on work and peoples’ experiences of it. Teenage Countdown champion, Dylan Taylor, found it really tough to get work, despite being on national TV with an exceptional talent. He was unemployed for three years, but has now found a job. Read an interview with him and his dad on page 25. Peter Street, autistic war poet, shows why it’s wrong to assume autistic people are only good at maths on page 28. On page 21, we hear from two autistic weightlifters on how having a special interest broadens horizons. We also spoke to two inspirational professionals, David (page 16) and Tanya, who is autistic herself, (page 46) about why they love the work they do to support autistic people and their families. Tell us your experiences of looking for work, and of jobs, by emailing us at YourAutismMag@nas.org.uk.

Contents

Ps Save the date! Our Annual General Meeting will be at the Museum of London on Saturday 26 November.

44 Reviews

Eleanor Wheeler EDITOR

Visit our Facebook page www.facebook.com/ YourAutismMagazine

04 News 10 Research in focus 12 Readers to the rescue 14 How do I… prepare my relative for when I’m gone? 16 Feature: my story 21 Feature: Olympic weightlifting 25 Interview: Dylan Taylor 28 Feature: moment of madness 33 Advice: benefits of social media 37 Advice: mindfulness 41 Spotlight on support: Welfare Rights Service 46 I’m a… proud professional and mum

PAGE

33 3

News

A round-up of the stories that affect you SUCCESS FOR #EVERYTEACHER CAMPAIGN!

Alex Marshall, Alistair Burt MP, Robyn Steward and Cheryl Gillan MP POLICY

Campaign leads to three-hour Parliamentary debate on autism Cheryl Gillan MP, who took the Autism Act through Parliament in 2009, secured a debate in the House of Commons in support of our Too Much Information campaign and World Autism Awareness Week. Over 40 Members of Parliament took part in the debate which lasted for over three and a half hours and many MPs had to cut short their speeches as a result. Cheryl said, “This debate brought out the best in Parliament and in parliamentarians across the board. There were important contributions and some amazing personal testimonies from MPs who are clearly

AUTUMN 2016

concerned about autism and what is happening to their constituents”. Jess Phillips MP, whose son is currently on a long waiting list for a diagnosis said, “The world needs to think differently about employment for people with autism. Only 15% of workingage people with autism are currently in full-time paid work”. In the autumn, we’ll start campaigning for better employment opportunities and support for autistic people as part of our Too Much Information campaign. Over 2,000 people responded to a survey on the issue and a report is due to be launched later this year.

Earlier this year, our Every Teacher campaign called for autism to be included in training for all new teachers in England. Over 7,000 people signed our joint letter with Ambitious About Autism, which asked the Government to make sure that the new Initial Teacher Training framework being developed for England includes autism. Every teacher will teach a child on the autism spectrum at some point in their career. It is essential that they have the tools to support all their pupils. Following our campaign, the new framework has been published and it says that from 2018, every new teacher will have to learn about the needs of autistic children and young people as part of their teacher training. We look forward to working with the Department for Education and training providers to make sure they have access to the best training resources. Know any teachers? Make sure they are signed up to MyWorld to get free resources and information about autism via email: www.autism.org.uk/myworld.

AUTUMN 2016 • NEWS

Testing the clothes at Helen Allison School

M&S LAUNCHES AUTISM-FRIENDLY SCHOOL CLOTHING RANGE This summer, Marks and

Spencer launches a new easy-dressing school uniform range. Although designed to benefit all children, the retailer expects the new designs to be especially helpful for autistic children with sensory processing differences or problems with tasks requiring fine motor skills. Following a product development campaign called Inventors Wanted, the retailer received lots of feedback asking them to do more for those who may struggle with clothing – especially autistic people. After some further research with professionals working with autistic children, they decided to develop the clothing range for general sale. Our Helen Allison School helped to test and fit the products. The range includes six garments, with versions for boys and girls. Charlotte Hunt, Product Technologist at M&S said, “Our aim was to do something that made

getting dressed and being comfortable in your clothes one less thing to worry about each day. The National Autistic Society has been with us every step of the way with their expertise and knowledge. Meeting the children was so valuable as their ideas and comments really helped.” Cathy Riggs, Senior Assistant Head Teacher at Helen Allison School said, “As educators specialising in autism, we are only too aware of the impact that sensory issues can have on learning. By helping develop the product, the students also helped educate others about their condition and we are very proud of the way that they did this with confidence. We look forward to seeing the new range in the shops, knowing that our students have played an important part.” You can find the range at bit.ly/mands-easydressing.

DATE FOR YOUR DIARIES We’re pleased to be hosting this year’s Annual General Meeting and Family Day at the Museum of London on Saturday 26 November! It’ll be a great opportunity to meet fellow members and share your thoughts about our forthcoming plans to increase public understanding of autism. Further details about the day and how to book will be available soon but, for now, please save the date. FREE MONEY MANAGEMENT TRAINING FOR AUTISTIC ADULTS MoneySuperMarket.com and The National Autistic Society are proud to announce the release of a free online training module on managing money. The module covers managing your bank accounts, reasonable expenditure and debt management. It includes videos, text, short quizzes, and an interactive ATM. Learn more at www.autism.org.uk/ onlinemanagingmoney. NEW NORTHERN IRELAND SERVICE IN PROGRESS Plans are in progress for our charity to build a new autism centre in Northern Ireland. Modern, family-oriented and designed with the needs of autistic people at its heart, the new centre will be located on the border of the Belfast and South Eastern Area in the Carryduff area. Call our Northern Ireland office on 028 9068 7066 for more information.

An artist’s impression of what the service might look like

Are you a Thomas fan? Then come along to our Thomas & Friends themed sponsored walk around the perimeter of Drayton Manor Theme Park, home of Thomas Land, on 24 September! It’s a completely autism-friendly event with sensory toys, a bouncy castle and plenty of experienced volunteers. Find out more at www.autism.org.uk/allaboard.

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Photo © Museum of London

Museum of London

NEWS • AUTUMN 2016

Claire and family presenting their cheque to our Chief Executive, Mark Lever

Remembering Jo Cox MP

FUNDRAISING SUCCESS FOR INSTAGRAM AUCTION Last year, mum Claire Packer raised £3,300 for our charity by organising an online auction via her Instagram account, offering lots donated by individuals and companies. Titled ‘AUT:CTION’, the fundraiser was such a success that she decided to do it again this year. Claire and her husband live in Swindon and have two children, one of whom – three-year-old Ned – is autistic. She writes a blog about their family’s experiences of living with autism which you can read at https://nedintheclouds. wordpress.com. This year’s auction ran during World Autism Awareness Week and was an amazing success, raising a total of £12,834. As well as the auction on Instagram – which included donations from artists, designers and boutiques – online lifestyle shop Studio NL donated a percentage from the sale of each of their ‘Ned’ fabric dolls to the cause. Claire also organised a raffle, and celebrity chef Gizzi Erskine personally pledged £1,000 to the cause. Thank you Claire and family, as well as everybody who took part!

We were shocked and saddened by the death of Jo Cox, MP for Batley and Spen, in June. Not only was she one of the first new MPs to start working with our charity when elected in 2015, but she saw that children in her constituency were waiting far too long for an autism diagnosis. Working closely with local campaigners, she succeeded in getting measures to reduce waiting times put Jo with Anne-Marie Kilgallon, who helped lead our Autism in place. Diagnosis Crisis campaign Fredi Kilgallon was finally diagnosed on the morning Jo died. National Autistic Society said, “Our His mum, Anne-Marie, who helped thoughts are with Jo’s husband, her lead the campaign said, “She was there when everyone else turned children, friends and staff. their backs. She came to groups, she “We’ll miss Jo and we’re deeply grateful for her support for autistic supported us. We’re blessed to have people and their families – she made worked with her.” a real difference.” Mark Lever, Chief Executive of The

GREAT INTERACTIONS PHOTOGRAPHY BOOK LAUNCHED A photo book and accompanying exhibition documenting the lives of people with learning disabilities and/or on the autism spectrum came out this year. Published by Dewi Lewis, Great Interactions captures images and stories of people supported by the charity, MacIntyre. An exhibition of the photography in the book by award-winning photographer Polly Braden was held earlier this year at the National Media Museum. Project Editor Rashmi Becker, who has an autistic brother and conceived the project, said the stories show “some amazing and sometimes sad histories”. Partly inspired by her work on Great Interactions, Rashmi is now doing a PhD on the role of front-line support workers in enabling autistic people with a learning disability to live better lives. Learn more about the book at: bit.ly/great-interactions-book.

‘Haircut’: Mary and Mandy with Richard

Two of the most influential charities in Northern Ireland – The National Autistic Society NI and Autism NI – have united to challenge the Northern Ireland government on what they see as the poor implementation of the Autism Act and strategy. Read their findings in the Broken Promises report at www.autism.org.uk/brokenpromises. 6

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AUTUMN 2016 • NEWS

Staff at The Baths receiving their Autism Friendly Award

WHAT DID PEOPLE THINK OF THE A WORD? After the end of the first series of BBC autism drama The A Word this spring, we surveyed over 2,500 autistic people, their friends and families, and autism professionals to see what they thought. The results showed 68% of people think it has helped to increase public understanding of autism and 84% of people wanted a second series, which has since been commissioned. In addition, 41% of people thought it helped others to understand them or someone they know on the autism spectrum. The survey results also showed 49% of people would have liked the show to have focused more on autism.

News in brief

The A Word launched in the US last month Alison Hughes, the mother in the series, caused a mixed reaction on social media. Some people openly called her unrealistic and a bully, while others related to the character and how she was processing her son’s diagnosis. Of the people we surveyed, 27% related to the character, while 25% said they thought she was unrealistic. Overall, there were many strong responses to The A Word, but the vast majority do believe that it has been a positive influence on public understanding of autism.

This month, a band of intrepid fundraisers will be climbing Snowdon to raise money for our charity. The Snowdon Challenge was inspired by Lochlan Carr, 15, who has Asperger syndrome and featured in the summer 2015 issue. Best of luck to everyone taking part!

AUTISM FRIENDLY AWARD LAUNCHES IN BATH In May, the world-famous Roman Baths in Somerset was the first place to receive an Autism Friendly Award, which champions premises that commit to making sure that autistic visitors receive the same warm welcome as everybody else. The Baths now provide clear information on their website to help autistic people plan their trip, have staff who are autism-trained around to help and several quiet spaces. In Scotland, Glasgow Specsavers was recently the first optician to become autism-friendly. Read more at www.autism.org.uk/afa.

Fingers crossed for good weather!

AUTISM ACT FOR WALES The Welsh National Assembly has made pledges for an autism act for Wales in the near future. Following a lack of clear majority in May’s elections, negotiations took place between the parties to set out areas of common ground. One of the pledges agreed to was to ‘introduce an Additional Learning Needs Bill, which includes an Autism Act’. Our charity campaigned hard in the lead up to the election alongside our branches and persuaded five of the six parties to commit to an autism act in their manifestos. While the detail is not clear yet, it is a significant move towards securing an autism act for Wales. Influencing manifestos: a hustings event before the election

AN IMMERSIVE WAY TO SHOW PEOPLE SENSORY OVERLOAD Following the phenomenal success of our Too Much Information film, we’ve produced a 360 degree virtual reality version to help people who aren’t autistic to feel what it might be like to get too much information. To watch it at home, you can buy cardboard goggles, download the app and slot in your smartphone. Or, catch it on tour around the country this month. Find out how to buy goggles, dates and locations at www.autism.org.uk/vr.

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Research in focus Bringing you news of the latest research into living and working with autism Beating stress in autism A new survey by UK charity Research Autism shows that stress is the single biggest factor affecting quality of life for autistic people and their families, causing significant impact across all key aspects of life including school, work, health and mental health, relationships and behaviour. The survey of 360 people living with

autism found that 98% of autistic people and their carers said stress is a significant issue for them, with 89% adding that it is difficult or impossible to find effective support for dealing with stress. A case study from the research, 50-year-old autistic adult Maggie, said, “The struggle with stress has become worse the older I’ve become... Stress is crippling most every day. A huge chunk of my life is now unmanageable and I’m having to ask for help.” Research Autism argues that stress

in autism is much more common, severe and disabling than in the general population and often has longterm and devastating consequences. Following from the survey results, they launched a campaign this summer to address the issue called Beating Stress in Autism. “Our survey confirms that stress has a massive effect on health, especially mental health, relationships, education and work. Parents told us stress has led to family breakdown; autistic people

AUTUMN 2016

Autistic adults like Maggie say stress is an overwhelming part of life told us it rules pretty much every aspect of their lives” says Richard Mills, Director of Research at Research Autism. “It is very well known that stress is a big factor in autism and yet little investment has been made in research into understanding and responding to it. In fact, some of the ways autistic children and adults are treated seems to make matters worse. “Current research has also done little to reduce the significant stress found amongst families and carers of autistic people.” Research Autism is organising

an international Stress Summit in September to hear autistic people, their families, professionals, scientists and

researchers speak on the subject of stress. The aim is to better understand the issues, explore the knowledge gaps and identify the research priorities which can inform decisions around research that builds on any promising approaches. The findings will be used to develop new practical strategies and tools to properly help all of those affected. ● • Research Autism is the only UK charity dedicated to the production of quality, trusted information on autism treatments and other approaches. Find out more about the research at http:// researchautism.net/beating-stressin-autism.

RESEARCH • FOCUS

Many fathers feel their role isn’t fully recognised by professionals

School can be an overwhelming place for the senses

Finding out about fathers A study by Leeds Beckett University has highlighted the very important role that fathers play in the lives of autistic children. A national online survey of 306 fathers found that many men were highly involved in their children’s day-to-day care, in close collaboration with mothers. Around half were “mainly” or “equally” responsible for managing their children’s morning and bed-time routines, as well as sleeping problems. Three quarters of men played with their autistic children “several times a week” or “every day”. Four in ten had helped with homework “many times” during the previous year. A major barrier to greater school involvement was that most meetings took place during the working day. Over half of fathers reported feeling stressed for “quite a lot” or “most of the time” and major causes of stress were worry about the future, managing children’s behaviour, not getting

a break, concern about family finances, not enough services and lack of sleep caused by children’s sleeping problems. Fathers received most support from partners, followed by grandparents and other children in the family. Just under half of men received no support from paid workers and most felt that professionals did not sufficiently recognise the importance of their fathering role. Fathers’ coping strategies included “focusing on the positives” and “coming up with plans for what to do”. Senior Lecturer Carol Potter said, “To best support families of children with autism, services need to recognise the needs and contribution of both parents and find more effective ways to include fathers, as well as mothers in their provision.”*

*Research findings reported here are drawn from an article to be published next year: Potter, C. A. Father involvement in the care, play and education of children with autism. Journal of Intellectual and Developmental Disability.

STUDY INTO SENSORYBASED OCCUPATIONAL THERAPY AT SCHOOL A small-scale study by the Autism Diagnostic Research Centre (ADRC) Southampton suggests that providing an occupational therapy (OT) service with a sensory-based approach could help autistic children with sensory differences at school. Commissioned by the Isle of Wight Clinical Commissioning Group, the six-month project provided occupational therapy sessions for autistic children in school, supported by training for those children’s parents and for school staff. Results varied between the individuals, but some improvements were observed, including during the period in which the programmes were being run. Feedback from participants, and observations by the occupational therapists running the sessions, suggested the staff training had a positive impact on attitudes and understanding of autism and sensory issues. For many autistic children, sensory differences can have a major negative impact on their daily lives and their ability to manage at school and access the full curriculum. The everyday stimuli at school that other children take for granted can be overwhelming for autistic children and may often lead to behaviour that challenges, school avoidance and, in some cases, exclusion. • Learn more about the ADRC’s work at www.adrc.co.uk.

Find out more or get involved • Read more autism research in the Autism journal at aut.sagepub.com. Our members get a 30% subscription discount. • Could you support vital research work? Visit www.researchautism.net to find out more.

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Readers to the rescue!

DO YOU HAVE A PROBLEM OUR READERS CAN SOLVE? GET IN TOUCH AND BENEFIT FROM THE EXPERIENCE OF OTHER PEOPLE LIVING AND WORKING WITH AUTISM.

For expert advice and information

on any autism-related issues, call our Autism Helpline on

0808 800 4104

HAS ANYONE managed to get a disabled bus pass for someone with Asperger syndrome? My son was told ‘no’ as he doesn’t have a learning disability — Parent MY SON HAS Asperger syndrome and is in the process of being diagnosed with PDA. I got him a ‘Disabled person plus companion pass’. You need to speak to your child’s neuro disability specialist and ask them for a letter showing that your child is not able to traverse public transport alone. If you are getting any kind of disability allowance, you need to take these two proofs to the local authority and show that even though your child doesn’t have a ‘learning disability’ it is a social communication disability and therefore that they need help. I hope this

was helpful. I know it’s tough. My son is 17 and I still have to fight every day for any help. — Ravyn I WORK IN A further education college for autistic young people and we are able to get disabled bus passes for most students. It is best to bring along some proof of diagnosis in case any questions are asked when applying for the pass. You will need to prove that you will benefit from the pass and you will struggle to get around without it. For more information I would look at this page on The National Autistic Society’s community website, it is really useful bit.ly/ community-bus-pass. — Katie I WOULD SUGGEST that you go back to your

council and try to speak to someone else. However if you have a letter of support from your GP, there is no reason why the application should be refused. I’ve only got experience of applying for a disabled pass as an adult where my first attempt some six years ago (accompanied by diagnosis and DLA confirmations) was unsuccessful. Then my wife spoke to someone at the council office who told me to apply again, tick the box marked ‘prevented from holding or would be refused a driving licence on medical grounds’ and get a confirmatory letter from my GP, which I did. This time I was successful. — Jim Many autistic people qualify for concessionary travel on the basis of learning disability, refusal of driving licence on medical grounds, or considerable difficulty with walking (see the Department of Transport guidance for local authorities available online). Find out more on this topic at www.autism.org.uk/buspass.

Help me next!

My son has been diagnosed recently. I want to talk to him about it but I’m not sure where to start. Does anyone have any advice? — Parent SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of In a Different Key: The Story of Autism by John Donvan and Caren Zucker, as featured in May’s issue.

Post your problems or answers on Facebook (www.facebook.com/YourAutism Magazine), email YourAutismMag@nas.org.uk, or write to: Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG. By writing to us with either a problem or an answer, you give consent for your contribution to be published. We reserve the right to edit submissions. *Read full terms and conditions at www.autism.org.uk/yam-readers-tcs

AUTUMN 2016

How prepare my relative for do I...

when I’m gone?

Planning for when you’re no longer around to advocate for your child can be difficult to face, but it’s vital to start early. This advice is aimed at parents and carers of autistic adults. Check the useful resources section below for advice on ageing directed at autistic adults. B Y O U R S O C I A L W E L FA R E ADVICE TEAM

BE REALISTIC AND DON’T IGNORE THE FACT OF CHANGE It can be hard to contemplate handing over responsibility of your relative’s care to others, particularly if you’ve managed to provide a lot of their support yourself over time. It can feel like no one else can understand your relative’s particular needs as well as you. However you need to be honest with yourself about what you can manage now and as time progresses – and also about what your relative’s needs are, and will be. It’s almost certainly going to take longer for them to come to terms with the inevitable changes of ageing than someone who isn’t autistic. So anything you can do to manage those changes gradually, in stages, and avoid a sudden disruption of several aspects of your relative’s life at once will help.

AUTUMN 2016

HAVE A PLAN Many families worry that the quality of their relative’s care will decline when they are no longer around to advocate for them. Although this should not happen, you need to have a long-term plan for managing how your relative is going to cope with you not being around anymore, and with possible changes to their care, financial situation and living arrangements. Who is going to take over the care of, or advocacy for, your relative when you die? Is there another family member or close friend who can take on the responsibility, have they agreed to it and have you discussed with them what’s involved? Discussing this together is vital to make sure everyone has a shared understanding of expectations and responsibilities, and that no assumptions are made.

ENGAGE WITH SOCIAL SERVICES EARLY ON AND REGULARLY Even if there is someone who can take over the charge of your relative’s care, you are still likely to need to talk to social services. An autistic adult may not be aware of just how much support they are getting from their parents or carers. Social services should assess your current and your future planning needs. You may be sent away with very little if you’re not at a critical point. But it’s vital you open the conversation with them early on, before you get to that point, and that you are as clear and specific as possible about your immediate needs at each stage. For example, if your child is 50 and you are 75, you may still be able to do a lot, but are finding managing all the housework harder – meaning you are less able to cook each night for your son, who can’t cook for himself. It’s important to get social services involved a little bit at first, so the support can grow over time. Part of the importance of doing this is to get you and your relative used to getting outside help, as it can be a difficult emotional adjustment to make.

HOW DO I... • FEATURE

GET FINANCIAL ADVICE Make sure you take advice on which financial arrangements will result in the best outcome for your relative once you’re no longer around. If you are able to, leaving your child a lump sum of money in your will may seem like the right thing. But this could mean they are no longer eligible for benefits, or result in unmoderated or unsustainable spending in some cases. Take legal advice on writing your will and setting up a trust as far in advance of the need arising as you can.

KNOW ABOUT PENSIONS The benefits a person can get upon reaching retirement age are different to working age benefits. Be aware of what your relative’s rights to a pension may be. Some changes to the state pension took place in April this year, which are particularly relevant if your relative is in work. The Citizens Advice Bureau is a good place to start when getting advice on this subject. You can read information on this topic at www.autism.org.uk/benefitsover60.

THINK ABOUT HOUSING

BE OPEN ABOUT COMING CHANGES Although you want to protect your relative, it is better to be clear and realistic about what will happen in the future to help them to prepare. Consider using communication aids such as social stories to explain the changes, timetables to show when there will be assessments from social services, or visual routines to increase independence such as ‘how to use a washing machine’ or ‘weekly chores’. Completing a self-advocacy booklet (see below) could also help your relative explain their needs to new people without having to repeat themselves. Working together in advance and being open and proactive in your approach to planning is a good way to help to relieve the stress around this difficult and inevitable change.

It may seem like a lot of stress to move your relative out of the home they are used to, but consider whether continuing to live there after you’re gone is the best practical option for them. Is it the most suitable environment for them to grow older in themselves? If it’s a family home, do they need that many rooms? Of course, moving may be difficult for your relative and require careful planning – but this is not necessarily a reason to avoid doing it. In fact it may be less disruptive overall to do this while you are still around to avoid the double stress later of having to move homes as they are dealing with bereavement. If you rent, don’t assume you can pass on rental agreements as this may not be possible, and if you’re in council housing make sure you’re aware of what legal status your relative will have in relation to the house once you’re gone.

Useful resources • Advice on preparing for change: www.autism.org.uk/change • Advice for siblings: www.autism.org. uk/adultsibs • Advice on managing anxiety: www.autism.org.uk/anxiety, visual supports: www.autism.org.uk/ visualsupports and social stories: www.autism.org.uk/socialstories. • Advice on organising, sequencing and prioritising: www.autism.org.uk/ organising Publications: • Self-advocacy booklet, downloadable

at: www.autism.org.uk/ selfadvocacy • Peaceful, pain free and dignified: palliative and end of life care for people on the autism spectrum by Jill Ferguson and Val Laurie (BILD) • Thinking Ahead: supporting families to plan for the future by the Foundation for People with Learning Disabilities (free to download at www. learningdisabilities.org.uk) • Ageing with autism: a guide for clinicians and health professionals by The National Autistic Society • A really simple guide to wills and

trusts for people living with autism available at www.autism.org.uk/ willsandtrusts For autistic adults: • Older Adults and Autism Spectrum Conditions by Wenn Lawson (Jessica Kingsley Publishers) • Advice on autism and ageing: www.autism.org.uk/ageing Interested in taking part in research on ageing and autism by Newcastle University? Visit http://research.ncl. ac.uk/adultautismspectrum.

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FEATURE • MY STORY

“Winston has tremendously improved the way he wants to live his life, and he is now at the best place.”

AUTUMN 2016

MY STORY • FEATURE

My story

Winston on the way to his Edinburgh flight

Winston and David David Mudede has been key worker to Winston Murrain for ten years. When David first met Winston, he was in residential care and he couldn’t do much for himself. But with David’s help, Winston’s skills have grown and his life is very different to how it was.

started working for The National Autistic Society in June 2003. Before that, I worked for a tea company back in my home country. I started as an office boy, and after three years had become a sales representative. I did that for 13 years before I was made redundant. Two years later, I decided to come to England and joined an agency. After working hard for a few months, I felt the need to join the charity as a member of bank staff. Then in 2006 I became a full-time member of staff working with Mr Winston Murrain. I am passionate about my job. I come from a large family, and I have always helped my mum, dad and the community. But when I came here and worked in various care homes as part of an agency, I quickly realised that every one of us is different. In everything we do, in the ways that we live and the lives we choose. Each time I finished off my work, I would go home and think about all those people who are disadvantaged. And one thing which came into my mind and my heart

was that if we all can’t help those who are unable to do things for themselves, then who else can? GETTING TO KNOW EACH OTHER I still remember very well the first time I met Winston. It was a sunny morning when I arrived for my first shift at 10am at Juniper House, the residential home where he lived. Winston and other service users and staff were outside in the garden. He had his hands on his hips. At first, I could not distinguish Winston from the staff, as he turned his head and glanced at me. Winston was youthful and funny with a good sense of humour. I remember he used to sit outside in the garden with his dad, sharing a can of beer. Winston was a joy to work with, though he sometimes had his moments – just like any other young person. I was constantly observing his behaviour at Juniper House and at his parents’ home. It was difficult to take him out in social settings, around roads and in shops as he had very little awareness of the risks

around him. He was not allowed to go into any shop to buy anything. He used to grab sweets and peanut butter off the shelves. Over the years that I have worked with him, Winston has developed a great deal, learning to look after himself and interact with people. He was eventually able to move from a residential home to supported living, where he has much more independence. With assistance, he now shops and cooks for himself, and can get out and about in the community. To help Winston, I guess I have been consistent and gradually built up trust with him. He needs a low-arousal approach, the use of Makaton sign language to let him know what’s coming up next in his programme. He also needs reassurance and for his music to be on all the time. ALL ABOUT WINSTON Winston likes music, wherever he is – whether it is night time when he is asleep or during the day. His other favourite things are all food, driving, swimming, cycling, salt,

YOUR AUTISM MAGAZINE

FEATURE • MY STORY

David has earned Winston’s trust over time to become friends

About to take off!

peanut butter, touching things for sensory stimulation, rearranging people’s clothes, the seaside, dressing smartly, water, sand, and familiar staff. He really doesn’t like invasion, static shock, unfamiliar staff and not going home to see his family. Winston has tremendously improved the way he wants to live his life, and he is now at the best place. PREPARING FOR AN IMPORTANT DAY Winston has a wonderful family whom he adores. He has one sister and a mum and dad, though his mum and dad live their separate lives. He is very close to his family and he likes to spend Christmas, Easter, and weekends with them in London. When Winston first joined the residential home as a young man, once of his goals in his plan was to go to Jamaica or St Lucia one day as his grandmother, who he was very close to, was from St Lucia. Then recently Winston’s sister got in touch to say she would be getting married in September in Jamaica and would love for Winston to be able to walk her down the aisle. As he has been improving in life

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“Just as I was feeling the most nervous, Winston turned to me, smiled broadly and stuck both his thumbs up.” and social skills, we have been gradually working together to make the goal of going to Jamaica a reality. And the wedding meant there was now a specific date for us to work towards. We have looked at photographs of planes, airports and holiday

Share your story

resorts. We applied for a passport, and did a successful practice flight to Edinburgh, as preparation for the longer flight to Jamaica. I didn’t know how Winston would deal with the flight. We sat at the front of the plane. Just as I was feeling the most nervous, Winston turned to me, smiled broadly and stuck both his thumbs up. It all went fine and on the way back he looked out of the window the whole way. Nobody would ever have thought Winston capable of this in the past so it was a good moment. We are taking it step by step but we hope Winston will fly out to Jamaica for the wedding next month. I think autistic people are amazing people if given enough support tools. With better education for the community about autism, they wouldn’t be underestimated as much as they are now. ●

• Do you think you could do what David does? Find out about becoming a support worker at www.autism.org.uk/jobs • Would you like to share your story about any aspect of living or working with autism? Please email YourAutismMag@nas.org.uk or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, and we may feature you in a future issue.

WEIGHTLIFTING • FEATURE

Raising

the bar

We spoke to two autistic adults who feel passionately that Olympic weightlifting is a sport that’s well-suited to people on the autism spectrum, whether done competitively or not. They told us how they got into it and why they think it’s so brilliant.

WEIGHTLIFTER MARTYN RILEY was diagnosed with Asperger syndrome at the age of 30 in 2014. All three of his sons are also on the autism spectrum, and one of them, 13-year-old Kobain, is learning to weightlift too. I’ve been involved in Olympic weightlifting for nearly twenty years, have won multiple titles and medals in my region and nationally, and I’m a

national referee and a qualified coach. My 13-year-old son, Kobain, got a diagnosis of autism spectrum disorder in 2011. I’ve been coaching him in weightlifting for the past three years. Despite being more affected in his development and learning than me, Kobain is an undefeated threetime British development champion and has been able to integrate well into the team of young lifters he trains with. Because he’s doing so well, the first time Kobain loses will be hard. I’m trying to prepare him by reminding him to try his hardest and do his best – because you can’t do better than your best. But it’s inevitable – everyone loses one day. The first time I lost I felt like quitting. But I didn’t. I got into the sport when I was 14. I was at the local pool and I heard Martyn coaches his son Kobain

some banging around – so went downstairs to see what it was. I found one of my friends doing some weightlifting and I had a go there and then. After that, I got fixated and I started training three times a week. I’m quite a competitive person. What I like about the sport is that you are aiming to compete against yourself. You are your own opponent. Your targets are your own targets. It’s so structured, disciplined and it allows you to take out aggression. When I find things hard, rather than kicking off I channel my aggression into the bar. It helps me let off steam. Even though it’s an individual sport, you have a team supporting you. You have your coach and your team mates. But it’s ultimately you against the bar. I liked winning trophies too! I have competed a lot over the years but I now run a kids’ club in Featherstone, the village where we live. I love seeing kids achieve and giving back – I get such a buzz out of seeing their smiles when they achieve something. I train Kobain and other club kids. It’s nice watching them support each other and warm up together at competitions. I’m lucky that Kobain and I have the same interests.

YOUR AUTISM MAGAZINE

FEATURE • WEIGHTLIFTING

I’m really proud of him. When you’re autistic, sometimes learning can be hard as you develop rigid ways of doing things. Once I learn how to do it one way, it’s hard to learn a new way. For example, I know that you shouldn’t bend your arms too soon but sometimes you go to autopilot and bad habits start coming back in. I still have some bad habits. Having a diagnosis means I can accept that. Ever since I got my diagnosis, it gave me closure. With social skills, I didn’t understand why I couldn’t get my head around stuff. I didn’t get that things weren’t always black and white. Even if people spent ages explaining. I try to keep reminding myself it’s not all about me. But part of me thinks it is! My brain wants me to be selfish, but I don’t want to be selfish. I have a lot of internal battles. For many years, people thought I just had anxiety before I got diagnosed. Sometimes I think that’s why it’s

a bit harder if you are ‘more able’ because you can see that there’s something different which is making your life harder. But that doesn’t mean you know how to sort it out. I’ve got by in life because I’ve been clever. I’d always known I was a bit different. It’s like everyone else is in a blue shirt, and I’m in a red shirt. But being diagnosed has helped me understand myself. I used to feel like a failure. But I look at the stuff I’ve achieved and I don’t feel like a failure any more. I also have quite a good radar for noticing other people who are like me. My advice for parents is to encourage your child in what they like to do! They can only deal with what they’ve got. But if you aim for the top and you only hit the middle, that’s still a great achievement. One man’s hill is another man’s mountain. I think our story is one of sporting success, despite the obstacles we’ve faced as a result of being autistic. Development-level weightlifting focuses on technique, not weight

ALIS ROWE has Asperger syndrome. She has been doing Olympic weightlifting for four years and wants to promote it as a sport for women. I hated PE when I was at school but I knew exercise was important for health. After leaving school, I took responsibility for my own health and started to exercise regularly. I was very fortunate that my parents had a rowing machine, an elliptical machine and a set of dumbbells at home and so I was able to use those. I was (still am) far too shy and too socially anxious to go to a public gym and I don’t like travelling either (even going to places that are close to home). All those factors put me off exercise! But – lucky for me – I had a workaround, because the equipment we had at home was perfect. I read a lot of fitness magazines (mainly Men’s Health and Men’s Fitness) and used to cut out pages of workout programmes and stick them on the wall, which is how I learned how to use dumbbells. I also joined a couple of fitness/ weight training websites and spent all my free time reading about how to weight train. Fitness quickly became my special interest and before long I had turned my garage into a gym that was equipped to meet my complete exercise requirements! As soon as I got a barbell and a power rack, my weight training really took off. Over time, I’d had a few personal trainers. However one was particularly interested in Olympic weightlifting. At the time, I didn’t even know what Olympic weightlifting was. He told me that I had good flexibility, mobility and strength, and that I might really enjoy

“What I like about the sport is that you are aiming to compete against yourself. You are your own opponent. Your targets are your own targets.” — Martyn Riley 22

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WEIGHTLIFTING • FEATURE

Alis thinks weightlifting is a great sport for women

“I like the fact that my weightlifting is solitary. The most enjoyment comes from being able to do it alone, in my own time, in my own way.” — Alis Rowe it, so why not give it a try and see? After my first few sessions of coaching and learning more about Olympic lifting on the internet, I was hooked. It started from lots of hours and days just learning the basic movement of the snatch using a broomstick! It was a few weeks till I got to use a barbell. I wasn’t put off though and I’m really glad I stuck at it. As well as my power rack, dumbbells and standard men’s bar, I also have my own weightlifting platform, jerk blocks, a women’s specific Olympic barbell, and a set of Eleiko bumper plates all at home – so I have everything I need. My coaches come to my home, which works well for me. Olympic lifting is not the sort of sport you can teach yourself and I would recommend anyone who wants to try it to get themselves a good coach. It is a very technical sport and there is no substitute for someone watching you and cuing you in real time. After five years, I am now pretty good at it and, most importantly, I enjoy it so much it changed my life. I qualified as a personal trainer, although I have not pursued this as

a career, due to my autism. I’m good enough at weightlifting to qualify at the national level but I have no interest in competing, even though my coach has tried to persuade me. The primary reason is that I do not like to be the centre of attention – ever. I do not even like talking to people because when I am talking I feel like the spotlight is on me. If I competed, I would feel very shy, embarrassed and anxious. Also, I’m not a competitive person. I like to compete against myself because I like to develop and progress who I am as a person, but I don’t like comparing myself to others. In fact, comparison with others has been very damaging to my self-esteem. Growing up undiagnosed with autism meant I was never “as good” as my peers at certain things, and I have often felt inferior and upset. I like the fact that my weightlifting is solitary. The enjoyment I get comes from being able to do it alone, in my own time, in my own way. I am also sometimes reluctant to train in the way my coach wants me to (if, for example, they want me to stop a certain exercise and focus on another one instead, or if they want me to change my diet –

that’s not going to happen!). If I was going to compete, I would have to obey their instructions entirely, which, again, would take away some of the pleasure of lifting for me. I think it’s a great sport for people with ASD, especially females. Not only do they have the autism traits (such as hyper focus, dedication, commitment, the desire to master, and the love of repetition and sameness), but also, physically, females are thought to be better ‘designed’ for lifting than males. We are generally more mobile and more flexible, have strong legs, a lower centre of balance, and may be more patient and willing to listen and take advice! If you’re interested in trying it, my advice is to get a coach who works for you (make sure they understand your autism and explain what you need from them and what your limitations are). Read about it and watch lots of videos! Practice and have patience. Weightlifting is a frustrating and very difficult sport. There will be lots of ‘bad days’, but with consistency and commitment, all the work pays off and you can be amazing at it. It’s a very impressive and addictive thing to get into! ●

Find out more • Find out more about Olympic weightlifting in the UK at britishweightlifting.org. • We offer autism training for sports coaches and physical activity leaders. Find out more at www.autism.org.uk/active. • Find autism-friendly sports clubs near you at www.theautismdirectory.com and at www.autism.org.uk/directory.

YOUR AUTISM MAGAZINE

FEATURE • DYLAN TAYLOR

Dylan is enjoying his job at a tenant vetting agency

FEATURE NAME • FEATURE

Living day

19-year-old Dylan Taylor is a Countdown record holder for getting 974 points over eight rounds. His amazing achievement has got him quite a lot of attention. But he’s unfazed by his success, and just wants to get on with his own thing. We caught up with him to find out what that is. BY ELEANOR WHEELER

Do you remember getting your diagnosis? What happened? When I was 14, I got a referral from a doctor, and went to the assessment with my mum. I wasn’t bothered by it. I didn’t know much about autism then, and I still don’t. How did you find school? I didn’t like it at all. I wasn’t a studious person one bit. I found pretty much all the subjects boring, even geography. I spent a lot of my time day dreaming and not paying attention. I didn’t keep up-to-date with work. I got a fair few detentions and all of that, but not for naughtiness – for not doing work. My parents weren’t too happy with my GCSE results. Basically I was never a school person and probably never will be. When did you first think you’d like to be on Countdown?

When I was eight. I used to watch it and beat the rest of my family, so I realised I was quite good at it then. I got into it properly when I was about 15. I was 17 when I first went on, and I have the all-time record of the highest points ever. I loved it. I felt like I had found a natural talent. It’s the greatest passion I’ve ever had in my life without a doubt. My parents really supported me in every way – you name it, they supported me in it. After school, you did a short college course. How did that go? The course was in travel and tourism, but I wasn’t interested in it. My dad picked it. I was extremely careless about it and I just thought ‘let’s get this out the way’. I didn’t do work when I got home. I didn’t really make any friends on the course. I’m just not a ‘humans’ person. I would much rather have three good friends in total than

“I don’t feel put under pressure by what people say. I do what I like and I won’t really be shoved off my interest because people tell me to.” 25

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Photo © Cesar Rodas

by day hundreds. I like to chat to my friends online but interacting with people is not really something I desire. You decided against applying to go to university. What was it that put you off? I’m probably about 100 miles away from university. I’ve never even thought about it. You were unemployed for three years after leaving school, but you now have a job. What does it involve? Yeah, I’ve had the job since April. It’s a data administration job on passport and visa checks for a tenant vetting company. It’s a good job and I’d take it over other jobs. I input data from visas and passports into a database. It’s very repetitive but I don’t mind that. I would say I’m good at it. I don’t listen to music or anything as I’m doing it but there’s music on in the background. When I’m putting in the data I’ll sometimes be really focused on the task, but sometimes I do go into a day dream. Do you have much contact with colleagues? I have a bit of contact with colleagues, just a little bit to get help when I need it. They are all helpful. They all seem

FEATURE • DYLAN TAYLOR

Dylan says he doesn’t feel put under pressure by what others say

really experienced and they know the rules. I’ve not mentioned that I’m autistic and I’m happy to keep it that way. What was the hardest thing about being unemployed? I don’t really know, just not being able to do anything. But I am good at being bored. I’ll just day dream. I’ll be thinking about all sorts. I think about my hobbies. I really love Yu-Gi-Oh!, which is a trading card game. It’s my number one hobby and has been for about two years. It’s really good – you can play fun social games online, or in real life. You can compete in tournaments and things as well. I’ve been to Liverpool for a tournament, but only once. I mostly play online against friends or people around the world. I do tend to have interests that I get really focused on. But give it maybe 12 months and then I’ll get into something else. I got into Yu-Gi-Oh! again more recently as I remember loving the game when I was a kid. How do you see the worklife balance? Work is something you have to do in order to be able to follow your interests. I’m quite strange about money. I don’t like to get the sort of things that others do with their money. I’ll spend it on my interests at the time, but not on other things so I do find that I can save. What’s your advice for other young people on the autism spectrum looking for work? It’s hard to give advice for everyone on the spectrum because of all the levels of it. The varying degrees. I don’t have enough knowledge about it really. I don’t feel put under pressure by what people say. I do what I like and I won’t really be shoved off my interest because people tell me to. I don’t really look to the future. I think about the present and play it by ear. ●

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DYLAN’S DAD, SIMON, TOLD US ABOUT HELPING DYLAN FIND EMPLOYMENT It was difficult for Dylan to find a job. He has had low self-esteem and tends to shy away from interactions with people. This makes it tricky in an interview situation unless the employer understands and is willing to give him an opportunity. But Dylan has specific skills, he just needs the right job. After he left school I tried to encourage him to consider different roles and helped him get work experience. Countdown came and went, and I expected an employer to have got in contact, wanting to use his skills. Nothing came. A couple of false starts later, I saw an advert in my local shop looking for employees to work in a tenant vetting company. I contacted the manager and explained Dylan’s condition and abilities. I explained that he would not interview like ‘regular’ people and they showed compassion and understanding. They offered him a job and he still works there now. The first advice I would give is to keep going. Look for help which is out there and take any opportunity to do courses or programmes. Try

not to let your child become stagnant and defeated. Look for their abilities and try to find employment which demands those abilities and skills. Take a test to see what career is best suited to their ability, then look for employers. Talk to prospective employers openly and honestly about your child and tell them how they will discover a gem if given the chance. Go with your child to the programmes or interviews if they want and it is permitted, and believe in them. Do not put them in a position where they are not suited, ask them what they want and support them in finding a role in that area. I see us supporting Dylan for some time to come. Getting a job is one thing but I would like to see him continue developing his life skills. I think what he achieved on Countdown is a huge achievement. As a father, I’m proud of Dylan’s successes and look forward to celebrating future achievements. I’m happy that he may serve as an inspiration to others with a condition and demonstrate that autistic people have a considerable value in society.

Find out more • Too many autistic people are unable to find and retain work, despite having good skills. Our Too Much Information campaign is now focusing on improving employment. Find out more at www.autism.org.uk/tmi.

FEATURE • PETER STREET, WAR POET

Moment of

madness

Poet Peter Street went to the Croat–Bosniak War in the early 1990s. He feels that far from holding him back, his autistic traits made him more open to the experiences of war – observing and noting the things around him with truth and vigour. He writes about what it was like and shares some poems.

s far back as I can remember I have always been autistic. I have been treated differently. Yet, it’s strange, the only place I really felt safe and who really I was, was when I was a war poet. Unnatural is the word for being in a war zone, and yet it’s as real as real can be. Ask any soldier, nurse, medic or journalist. Being a war poet has a responsibility all of its own. That responsibility came to me in those early summer months of 1993 when a local newspaper was asking for volunteers to help load the humanitarian aid wagons organised by all the police forces in England. DECIDING TO GO I invited two police officers into the BBC Greater Manchester Studios, where I was poet in residence as part of the Who Cares? programme at the time. Live on air, Sergeant John explained, “We will be taking desperately needed aid to four points in war torn Croatia. We will be giving aid to devastated Pakrak, Zagreb and Cakovec. We now need volunteers to help load aid onto the many wagons.” “Can I hitch a lift?” I asked. “We leave in six weeks,” he said. “I’ll be ready,” I replied. My wife Sandra wasn’t immediately

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on board with the idea. “What happens if you’re ill?” she shouted (I have epilepsy). “This is stupid.” I pointed out that there would be medics and nurses with us. “Disabled people come back from a war,” she freaked. “They don’t go to a war. You can’t cope with the hoover, never mind the sounds of war. You get lost everywhere you go and who will sort your tablets?” Silent meals for almost six weeks. JOURNEYING OVERSEAS It was strange watching the white cliffs of Dover slide away from us and there was a strange anticipation of something I couldn’t quite understand. On the ferry, I was already being shouted at for wandering around on my own away from the main party of police officers, medics, volunteers and some men dressed in ordinary clothes. I swear I saw handguns under their jackets when the ferry swayed. We were soon in Europe. Our first main stop for a rest was on the side of the autobahn in Germany. I was doing okay until a stench of something

between urine and burnt coffee smacked my nose, which didn’t seem to be affecting the others. People were standing around on the grass resting place a couple of hundred yards from the convoy, in their groups. Some were talking. Some killed their fags. But most didn’t show any emotion, fear, whatever. Realisation hit me then more than at any other time: I wasn’t one of the herd. I was me. Then a red-haired woman came to chat with me. She was nice, asking where I was from and who was I with. I boasted that I’m a poet. She talked Ted Hughes while I talked Charles Causley. It was okay while it was just her and a couple of her friends. But when more people came over, I started feeling ‘full up’ of people. THE FIRST SOUNDS OF WAR At the Slovenian/Croatian border, in the far distance we heard artillery pounding poor souls and their surroundings. We watched in silence and while

“Realisation hit me then more than at any other time: I wasn’t one of the herd. I was me.”

PETER STREET, WAR POET • FEATURE

War-damaged silos in Vukovar, Eastern Croatia

BOMB DAMAGE Something was itching my eyes to stare over at the machines. Only I seemed to hear the bleeping yet my whole family was standing there and everyone who had ever lived, the whole universe even, all screaming not to look. Yet the bleeping seemed to bounce off every childhood picture and get-well card in the Zagreb hospital: like a ball to my feet. Then I made my mistake and looked at a face, a kind of no-face with holes for eyes nose, mouth, legs missing from the knees down still stuck to all those bits of shrapnel somewhere, which banged her life apart. A little girl, bandaged in mummy, almost pretty. Some nurse had taken an age getting each lap perfect so proud that when we look

there, alone, in the middle of two or three hundred people, me and my body felt strange. Deeper than an ordinary tingle, turning into a shudder with a tankful of fright thrown in for good measure. After some army rations were finished and fags killed, we were back on the road.

we might still see a person, someone whole.

IN CROATIA Our base camp was in the huge, grassy grounds of an international hotel just outside Zagreb. For the first couple of days, we rested there with a pot full of sun cream. My tent felt uncomfortable. It was in a perfect line alongside the other tents. The following day, I saw refugees – mothers, thinner than thin – carrying plastic bags full of pigswill, their dresses like shrouds. No breast to feed their babies. Women were dying on their feet. I gave my water and

YOUR AUTISM MAGAZINE

FEATURE • PETER STREET, WAR POET

ZAGREB CAMP

“Who says we can’t achieve the extreme?”

Our wagons rock, jerk through lines of pot-holes a foot deep in a cinder path where children walk barefoot. It’s a ride down into something I don’t understand; a dog shelter where at least one hundred families live, who beg out their hands and cough loud barking coughs. Naked kids swapping boredom for disease under a tap that’s splashing cold silver into mud pies. My interpreter – an English Lit. student, his family wiped out, is talking of Shelley in a waste land such as Eliot never saw.

sterilising tablets to one who was on the floor. I thought I’d seen everything. Not this. This was back to the Holocaust. Hours later, we were driving into Zagreb, and passed more mothers holding up their babies. In the refugee camp, my sensitive nose was hit with a stench somewhere between sulphur and diarrhoea. Some kids took me over to the far stream, where a body was rotting in the water. I was okay. Even though I was there, I was separate from it all. I wasn’t afraid. More than anything, I think being autistic helped me through the experience because I was happy to be away from the main group who

were talking, who seemed to be making the day’s trauma worse for themselves. After leaving the camp, I left the main group to go on my own into Zagreb to a refuge centre for vulnerable girls and women. I was told no other press person had been there. Who says we can’t achieve the extreme? It’s a strange thing being a war poet, autistic or not. Some people believe people on the spectrum are only good at maths. This makes me furious. Of course the experience is still with me. Just like it is with most who go to a war. ●

Find out more • Read more of Peter’s poems in Thumbing from Lipik to Pakrac: New and Selected Poems (Waterloo Press).

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Peter met people living in camps in terrible conditions

ADVICE • BENEFITS OF SOCIAL MEDIA

Building connections using social media Social media and communication technology is a phenomenon that has taken the world by storm and revolutionised how people connect with each other. Our Social Media Manager explains the particular benefits of social media for people on the autism spectrum. B Y AV I N A S H PAT I L , S O C I A L M E D I A M A N A G E R

Access to like-minded people and new friends can begin on social media

A “The new condition largestcalled social network, Facebook, social communication now has a staggering 1.65 billion users – disorder has been added.

more than the population of China.”

t has been fascinating to see how social media has provided new opportunities for people on the autism spectrum over the past few years that did not exist before. A different way of interacting Social media is a text-based and visual form of communication, which lends itself naturally to the autism community, given autistic people are more visually oriented, literal and direct. It also provides an alternative to having to deal with challenges around face-to-face communication, eye contact and body language. For non-verbal autistic people, the benefits are even more pronounced as they have a way of communicating without needing speech. The ‘always-on’ nature of social media also means people can take more time when thinking of responses, and can review the social consequences of their actions in a more logical and structured fashion. This helps if you learn social skills through watching others. A common feature of social media is emoji which are, for the most part, facial icons representing different emotions. For autistic people, they can provide structured ways of communicating and interpreting the emotional context of conversations. Recently, Facebook introduced a wider selection of emotional ‘reactions’

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ADVICE • BENEFITS OF SOCIAL MEDIA

Different forms of social media suit different people

which built on the now famous ‘like’. These reactions provide low-energy methods in which autistic people can participate in conversations, display emotion and respond to others’ posts. Different points of view Social media allows you to read about people’s experiences and perspectives, which is helpful if you struggle with social imagination. You can even set up different profiles and explore different roles. This is especially the case in the fantasy gaming community where players are able to interact with others in an imaginary, digital world. I have also observed an increase in autistic v-loggers who create channels on YouTube to share videos about their own unique experience of being on the spectrum. For many, the internet is already a place where they are able to explore different ways of expression and communication creatively as well as celebrating strengths and uniqueness. Sensory aspects The lack of physical presence when using social media minimises sensory challenges from overstimulating social environments. For instance, online chatrooms mean autistic people can communicate with lots of other people without having to face these issues. Someone could be sitting comfortably at home but still be communicating

with people across the world in a chatroom. It makes for a viable alternative to a noisy pub or bar, for instance. Finding people like you Another big benefit of social media is the opportunities it offers for connecting with like-minded people in real time, across the world. Nowhere is this more apparent than in special interest areas. Whatever the passion, be it photography, gardening or poetry, there is a community available online where autistic people share experiences with others on the same wavelength. These shared passions and common experiences can lead to positive conversations and ultimately to new friends. It’s great to see autistic people using sites like Facebook, Twitter and Meetup with the view of actually meeting face-to-face.

“On a Facebook newsfeed, you’re able to watch how other people communicate from a safe distance without being actively involved or physically present. This sort of observation would become quite awkward and impractical if it were done in person.”

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Social media also includes support communities where people can get advice anonymously if they choose. Our online community is a good example of this and is designed as a safe space where people on the autism spectrum get peer-to-peer support from others. Risks and benefits While there are so many positives, we also need to recognise that there are risks. Autistic people could be more susceptible to deception, bullying and trolling, especially for being different. Also, if it becomes an obsession to the exclusion of other activities, this can be a problem. Social media should always be viewed as adding value and not as a replacement for something else; how much or how little you are comfortable with is always a decision for the individual. ●

Join us Join our community at http:// community.autism.org. uk, find us on Facebook at www.facebook.com/ NationalAutisticSociety or follow us on Twitter at https:// twitter.com/autism.

ADVICE • MINDFULNESS

The value of mindfulness Many people find the practice of mindfulness, a mental state achieved by focusing one’s awareness on the present moment, to be an effective way of dealing with anxiety and other mental health issues. We asked some experts to explain what it’s all about, and why it can be particularly helpful for people on the autism spectrum. BY JEANETTE PURKIS, DR EMMA GOODALL AND DR JANE NUGENT

eople sometimes think mindfulness is a religious or spiritual practice, and often associate it with Buddhism. However, at its heart, mindfulness is essentially a way of interpreting and reacting to your experiences and can be accessed by anyone. Mindfulness is literally about being mindful – being aware of and paying attention to the here and now, accepting non-judgmentally what you are experiencing and the way that you are reacting. Mindfulness can be undertaken in isolation throughout the day or as part of meditation, or as a religious or spiritual practice. Some cultures have practised mindfulness for thousands of years. It became more widely accepted across the world during the 1980s following the development of Mindfulness-Based Stress Reduction (MBSR) (KabatZinn, 1980). Dr Kabat-Zinn defined mindfulness as ‘‘the awareness that emerges through paying attention on purpose, in the present moment, and non-judgmentally to the unfolding of experience moment by moment’’. In other words, paying attention to what is happening and to your resultant

thoughts and feelings. As you pay attention to what is happening and how you are thinking or feeling about it, when practising mindfulness you just accept everything as a temporary mental phenomenon that does not need to be analysed. It is a proven way of avoiding dwelling on the past or worrying about the future but staying focused on dealing with what is happening in the now. (Purkis, Goodall and Nugent, 2016) Mindfulness is particularly helpful to people on the autism spectrum as we tend to dwell on events and our resultant actions, thoughts and feelings. This preoccupation can lead to negative thought loops or rumination, and self-criticism or negative self-talk as we seek to understand our perceptions

of what went ‘wrong’ and what could have been done better. Mindfulness encourages the ‘acceptance’ of events, thoughts and feelings; for example using statements such as, ‘It is what it is’ can help an individual progress from a distressing event or reaction (real or perceived) with less emotional angst. In addition, learning to reframe negative self-talk can reduce the risk of the negatively biased emotions and memories becoming permanently entrenched to be revisited in support of self-deprecating rumination or beliefs. Verbalising a statement such as ‘It is what it is’ is merely a starting point for replacing negative or selfdeprecating talk and beliefs such as ‘It’s all my fault.’ or ‘I’m a bad person.’ with something that is emotionally

“Mindfulness is particularly helpful to people on the autism spectrum as we tend to dwell on events and our resultant actions, thought and feelings.” YOUR AUTISM MAGAZINE

ADVICE • MINDFULNESS

neutral in regards to blame. These techniques can feel foreign at first and even uncomfortable. But over time, when used regularly in conjunction with other mindfulness strategies, they can become the individual’s emotional and cognitive default. Mindfulness uses the concept of acceptance, which is fundamental in Acceptance and Commitment Therapy (ACT) (Hayes, 2004). It is important to note that it can take time to develop the accepting and non-judgmental attitude inherent in mindfulness and it is this attitude that is the key to breaking the negative thought loops, intrusive or ruminating thoughts. This kind of fixated thinking can be incredibly distressing and problematic for people on the autism spectrum. Fixated thinking can prevent sleep onset and cause people to be more anxious and stressed, as evidenced (in part) by how common sleeping difficulties and anxiety are among autistic people. Mindfulness approaches have also been found to: help people to live well with mood disorders (eg Raes, Dewulf, Van Heeringen, and Williams, 2009) be an effective way to self-manage and significantly reduce aggressive behaviours in people with and without schizophrenia and/or autistic people (Singh, Lancioni et al. 2011) increase compassion, empathy and sleep quality, and reduce anxiety, depression and rumination, and intrusive thoughts in autistic people and those with mental health issues (Hassed 2011, Spek, van Ham et al. 2013). Engaging in mindfulness is about being actively engaged in your life – being aware of what is happening and how you are responding to it. When you are not focused on what is happening or what you are thinking or how you are feeling, you can easily become preoccupied with intrusive or ruminating thoughts. (Purkis, Goodall and Nugent, 2016) To start developing mindfulness you

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Being present and aware is key to mindfulness

“As mindfulness is about accepting and being non-judgemental, there is no right or wrong way to be mindful, it is about what works for you.” have to first manage to distract yourself from your own inattentiveness in order to focus. Here are two example activities from The Guide to Good Mental Health on the Autism Spectrum (Purkis, Goodall and Nugent, 2016) that can help to develop that focus and attention to the moment: Breathe in through your nose, focusing on how the breath feels on the nostrils as it enters your body. Breathe out through your nose again focusing on the breath. Do not analyse, just do. Standing up with bare feet, feel how your feet are connected to the ground. Feel the sensations of temperature, texture and the sense of touch. Just feel, don’t respond. Trying out mindfulness activities

for a short period of time will help you to choose the one that helps you to pay attention to yourself in a way that isn’t stressful for you. As mindfulness is about accepting and being non-judgemental, there is no right or wrong way to be mindful, it is about what works for you. This non-judgemental acceptance can be very different to the ways in which we have been used to responding to life and to people and events around us. This means that it can feel quite uncomfortable initially to be in the moment and accept. If you keep trying for a few minutes at a time over a period of a few weeks and months it is likely to start to feel useful as a tool to manage anxiety and distress. For all types of mindfulness, the

MINDFULNESS • ADVICE

Mindfulness is not about emptying your mind

central premise is the same: being present and aware without judging yourself, other people or things. This can be very helpful for living well and decreasing stress, anxiety, ruminating thoughts, anger and aggression because it allows people to safely observe their world and themselves. This non-judgment is critical to helping people acknowledge and accept events, thoughts and feelings through mindfulness and therefore pre-empt or stop habitual reactions. This in turn provides the opportunity to see things more clearly and plan and implement more effective and positive strategies for use in daily life. Mindfulness can also aid the development of a better emotional balance in life and build resilience. Mindfulness is not about emptying your mind or getting cross with yourself when you are trying to be present and thoughts start rushing into your head. Instead it is about being aware of those thoughts and just letting them go, rather than habitually examining your thoughts in an unhelpful manner.

Many people can only be mindful for a minute or two initially, building up to longer periods of time. Some people with mental health difficulties, autistic or otherwise, find that spending just five or so minutes several times a day is beneficial while others find it such a useful technique that they try to be mindful all the time. For some people it can be a helpful response to particular events, such as managing a bus trip or preventing road rage. Some autistic people find it very difficult to connect to their body. Mindfulness can be helpful for some of these people and very frustrating for others. If you find it frustrating to

try and focus on your body, there are many other forms of mindfulness – like noting down all the things that you can see, hear, feel or smell. Once it becomes habitual to accept and not judge things in the present, it is harder to judge yourself and not accept yourself for who you are. In addition, during mindfulness activities you may become aware that you are being critical towards yourself, which you may not have actively been aware of before. Once you have awareness, through acceptance of yourself you can then learn to be kinder to yourself and show yourself compassion. ●

Please email yourautismmag@nas.org.uk if you would like a full list of references for this article.

Read more advice on mindfulness in The Guide to Good Mental Health on the Autism Spectrum by Jeanette Purkis, Emma Goodall and Jane Nugent (Jessica Kingsley Publishers).

YOUR AUTISM MAGAZINE

Spotlight on Welfare Rights Service

We help families and individuals find out what they are entitled to

How can our charity help you? Autistic adults, children, and their families may be entitled to a number of benefits. But negotiating the benefits system is not always easy. Jane Owen-Pam from The National Autistic Society’s Welfare Rights Service explains how we can support you to tackle it.

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give advice and information about benefits to autistic people and their families. I write the benefits information that is available on our website and offer telephone and email support. “There are more than 40 different benefits and entitlement is based on an individual’s circumstances: there are benefits for people who are in work, who are not in work, for children, for carers and for pensioners. “The most common query at the moment is about Personal Independence Payment (PIP) which is a benefit for adults who have difficulty or need support with certain basic day-to-day activities. People often contact me because they have questions or problems with the claims and assessment process, or wish to appeal against a decision. The assessment process involves attending a face-toface assessment and this is a particular cause of worry and problems. I usually provide advice to about 100 clients each month and about a third of those

people are contacting me about PIP. “Another regular query is about Disability Living Allowance (DLA) for children. DLA is the benefit for children who need extra care due to having a condition or disability. Parents often have questions about the claim process and sometimes DLA isn’t awarded at the correct rate and parents need advice about how to challenge decisions. “We have seen massive change to the benefits system over the last three years. For adults PIP has replaced Disability

“Your service was excellent, timely and delivered in plain English, so that we knew what to do next. Many thanks.”

Living Allowance and this has caused upheaval, change and worry for a lot of autistic people and their families. Now we are starting to see the introduction of Universal Credit which replaces several of the existing means-tested benefits. The introduction of Universal Credit is an even bigger change than PIP and will affect a large number of autistic adults, carers and parents of autistic children. “We will work hard to provide up-todate, accessible information about these changes. I find it satisfying to have an expert knowledge in this specific area, and to use that knowledge to answer people’s questions well.” Visit www.autism.org.uk/benefits for up-to-date information about benefits. You can contact our Welfare Rights Adviser on welfarerights@nas.org.uk to ask for advice via email or to book a telephone appointment, or if you don’t have internet access you can call 0808 800 4104 to make a telephone appointment.

Did you know?

The Welfare Rights Service provided advice to over 1,100 people last year, and many more people accessed its online information. The service is funded by our generous supporters but without that help, it would be unable to continue. Please visit www.autism.org.uk/getinvolved to find out how you can donate or fundraise to help us continue our work.

YOUR AUTISM MAGAZINE

RESOURCES

AUTHOR: Bernard Fleming, Elisabeth Hurley and The Goth PUBLISHER: Pavilion Publishing PRICE: £19.99 VERDICT: An excellent, unbiased and clear information source THIS IS A FANTASTIC book which provides a comprehensive summary of the most frequently used interventions for autistic children and adults. The chapters are colour-coded and the interventions are categorised into broad types which makes it easy to use. Each section provides an outline of the approach and a discussion of the current evidence with a focus on best practice as set out by the National Institute for Health and Care Excellence (NICE). It is straightforward and unbiased. The reader is encouraged to evaluate the information provided for themselves and is given tools to help them do this. I found the book very interesting and I think it is a really useful tool for people who have a diagnosis of autism, parents and carers as well as professionals as it gives people the information to be able to make informed decisions about support.

Reviewed by Lizzie Mason, Senior Behaviour Support Coordinator, The National Autistic Society

Giveaways To win a copy of Artistic Autistic Colouring Book: Precision colouring for the creative obsessive by Peter Myers, email YourAutismMag@ nas.org.uk with your name by 16 September 2016. The winner will be announced in the next issue. The winner of last issue’s competition to win a Textured Mr Tumble is Helen from Merthyr Tydfil. Well done, Helen! And Chitra from Croydon is the winner of a £28 Stories4Life gift card. Congratulations, Chitra! We’d like to hear about your experiences of diagnosis. How long were you waiting? Where were you signposted to for help afterwards? What advice would you give to others going through a diagnosis at the moment? Email your answer to YourAutismMag@nas.org.uk by 16 September 2016 and you’ll be entered into a free draw to win some Something Special and Woolly and Tig goodies, kindly donated by Golden Bear Toys.*

Our six favourite… children’s activity clubs

SCOUTS, UK-WIDE The UK’s biggest mixed youth organisation, Scouts offer around 450,000 6- to 25-year-olds around the country activities, experiences, adventure and the chance to help others. Find out more at scouts.org.uk.

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SPECTRUM SPLASHTIME, BRIDGEND BRANCH On Sunday afternoons, this relaxed pool session is for autistic children and siblings. With water games and floats, there are also lessons available from a parent coach. Find out more at bit.ly/2aeXy3v.

AUTISM KIDZ CLUB, RENFREWSHIRE BRANCH Every other Saturday at 11am1pm in Paisley, this group offers arts, crafts, sporting activities, games, baking, toys and other interests. It’s a good social opportunity for children and their parents too. To find out more, email NASRenfrewshireBranch@nas.org.uk.

*Read full terms and conditions at www.autism.org.uk/yam-readers-tcs

Choosing autism interventions: a research-based guide

RESOURCES

Life on the autism spectrum: a guide for girls and women

Understanding autism: The essential guide for parents

AUTHOR: Karen McKibbin

AUTHOR: Professor Katrina Williams and

PUBLISHER: Jessica Kingsley Publishers

Jacqueline Roberts PUBLISHER: Exisle Publishing (Australia) PRICE: ÂŁ13.46 VERDICT: A very useful guide

PRICE: ÂŁ12.99 VERDICT: Highly recommended guidance for life

THOROUGHLY INTERESTING and written in a style that flows easily, this book offers great insight into life on the autism spectrum. There are many anecdotes that describe everyday situations and a range of suggested strategies are provided that might help to manage these best. The book is written very positively and encourages the reader to adopt a person-centred approach to recognising difference while thinking creatively about everyday issues. I really enjoyed and would highly recommend the book. Reviewed by Rachel Gittens, Autism Accreditation Adviser, The National Autistic Society

THIS IS THE MOST useful guide to autism in children and young people that I have read. The chapter covering assessment and diagnosis offers a great overview of the diagnostic process, and the key areas of development that practitioners will focus upon during the assessment process. There are chapters which focus upon pre-school, primary and secondary age children, and the case studies help you to see how the information relates to real life. Another chapter helps you to understand how to evaluate the quality and usefulness of autism related information that you find in books, or online. Reviewed by Debra West, Your Autism Magazine reader

Read more reviews on Your Autism Extra at www.autism.org.uk/digitalyam.

SUPER SWIMMERS ACADEMY, BRISTOL BRANCH A swimming club offering relaxed sessions with fewer people in the pool, exclusively for autistic children. Find out more at www.nasbristolbranch.webeden.co.uk.

HORSE RIDING, DUNGANNON BRANCH On Saturdays, this club for autistic children and siblings features ponies Coconut, Ned, Monty and Minstrel! Riding can build strength and posture, as well as building self-esteem. Learn more at www. facebook.com/DungannonBranch.

GYM CLUB, TYNE AND WEAR BRANCH Well-attended by a range of ages and abilities, this club in a sports hall has equipment, bouncy surfaces and soft play for autistic children and their siblings on Sunday afternoons. To find out more, email NewcastleGateshead@nas.org.uk.

These clubs were highlighted by our branches, but there are plenty more! Find your local branch at www.autism.org.uk/branches. YOUR AUTISM MAGAZINE

TANYA TENNANT

Since getting diagnosed, Tanya says she’s much kinder to herself

I’m a… proud professional and mum Tanya Tennant found her passion working to support families living with autism. That’s how she realised she was autistic herself.

rowing up, everyone was convinced I had mental health issues. There were lots of self-help groups, appointments and so on. None of it helped much, which I saw as a failure on my part. And that only made things worse. I’m generally a very happy, driven person – so suggestions of depression and childhood schizophrenia just didn’t make sense. It was sensory processing and anxiety which I struggled with. School was a difficult time. I spent most of my early years arguing with teachers, especially if I saw or perceived any injustice. I found it very hard to understand my peers, was bullied quite badly and would often run away. Looking back, autism had a profound effect on my childhood. I just didn’t know it at the time. On leaving school, I wanted to go to Glasgow Art School but didn’t cope well with the interview and didn’t get a place. Attempts at college courses all ended prematurely with me not able to manage the social environment and travel. Then I met Mark, my husband, and we had our first baby, Dan, when I was 23. It wasn’t easy as I wouldn’t say I’m a natural mum. I have to work hard at it, especially remembering to give hugs and saying “I love you”. Other people tell me I’m a brilliant mum though and very supportive and understanding of both my children. At the age of two, Dan was diagnosed with

autism. That’s when I started volunteering for The National Autistic Society. I wanted to help my son. From there I became a support worker, then I went on to supporting and training families. That was 16 years ago and I’m still here! Autism has become my special interest along with animals (penguins) and music. Despite getting loads of training about autism at work, I never applied this knowledge to myself. At a seminar one day a parent said, “Tanya, I think you have autism”. I spoke to my husband about it and he said “We’ve always known that though, eh!” It was a light bulb moment for me. I was diagnosed in 2013. Getting diagnosed is, hands down, one of the best things that has ever happened to me. It has helped me get perspective on my life, understand myself better and build more appropriate coping strategies. I now understand my sensory issues better and make allowances for the difficulties I have out and about. I‘m kinder to myself now. The best thing about being a mum is seeing my children grow up to be loving, caring young adults. Yes, life can be very difficult for us but we stick together and support one another. I’m so proud of them both. The most rewarding part of my job is being in a position to support families like mine to better understand and support their children. That’s when I’m at my happiest. It’s what I understand. I love supporting others and think I’m actually not doing too bad a job at it. ●

• Read more from Tanya on the challenges of work, including her advice for getting a job, on Your Autism Extra at www.autism.org.uk/digitalyam. • If you are autistic or know someone on the autism spectrum who is doing something amazing, we’d love to hear about it. Email yourautismmag@nas.org.uk.

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