Your Autism magazine - Summer 2017 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 51 – NO 2 • SUMMER 2017

My boys, Nathan and Curtis

NEED-TO-KNOW ADVICE

THE LATEST CHANGES TO PIP

Kathy on having twins with learning disabilities and no speech

SOCIAL STORIESTM AND HOW TO USE THEM

“I can’t be intimidated” Chris Packham on challenging misunderstanding

11-YEAR-OLD ERIN ON CHANGING SCHOOLS REVIEWS OF THE BEST HEADPHONES OPINION: INTELLIGENCE AND ABILITY ARE DIFFERENT THINGS

Summer 2017 EDITOR Eleanor Newland WRITERS Alice Todman and Suzanne Westbury

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 James Pembroke Publishing Tel: 020 3859 7100 annav@jppublishing.co.uk www.jppublishing.co.uk SUBSCRIPTIONS Only available to members of The National Autistic Society To join, visit www.autism.org.uk/magazine 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 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 Summer Vol 51, No 2 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. F RO N T C OV E R Photo © BBC

elcome to the May edition of Your Autism Magazine. In this season’s issue, as well as the musings of TV presenter and naturalist Chris Packham (page 18), you’ll fi nd Kathy Bickerstaff’s account of the day-today challenges of having 18-year-old twins with different and complex needs (page 28). We know many of you are keen to know more about the PIP process, so see page 32 for information about the latest changes. Look out for more on this topic in future editions. Also, take a look in the education supplement included in this issue for teacher’s advice on reducing sensory overload, and why getting outdoors can be so helpful for young people. Now is your chance to tell us what you think of this magazine in our survey. Visit www. autism.org.uk/membersurvey to fi nd out more. Have a lovely summer, whatever you’re up to. Eleanor Newland EDITOR

Visit our Facebook page www.facebook.com/ YourAutismMagazine

32 Contents 04 News 11 Research in focus 15 Readers to the rescue 16 How do I… transition to secondary school? 18 Interview: Chris Packham 22 Feature: how to make a show autism-friendly 24 Opinion: intelligence ≠ no problem 28 Feature: my story 32 Advice: latest changes to PIP 36 Advice: Social Stories™ 41 Spotlight on support: residential services 43 Resources 46 I’m a... film star

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News

A round-up of the stories that affect you

CQC ANNOUNCES NEW CHARITY PARTNERSHIPS

Night Walk fundraisers in Manchester

World Autism Awareness Week makes waves World Autism Awareness Week at the end of March saw various events taking place to mark the key point in the year to talk about and improve understanding of autism. Highlights included the London Eye lighting up pink, and leading autism researcher Simon Baron-Cohen giving a speech to the UN in New York about the basic human rights of autistic people not being met.

SUMMER 2017

Over 5,000 people signed up to fundraise for our charity, through a vast range of activities – including trampolining, walking, riding motorcycling, fundraising with their pets, collecting money, dressing up and many others. Jennie of Bowen Opticians in Weston-super-Mare said, “We wanted to encourage the wider community to become more autism-friendly to ease the isolation and difficulties autistic people face.” Together, you raised an incredible £185,500 and counting. Well done! If you’ve not yet sent in your money, it’s not too late. Call 020 7903 3570 or email supportercare@nas.org.uk.

THE CARE QUALITY Commission (CQC), which is the independent regulator of health and adult social care in England, launched new partnerships with a number of national charities this year, including The National Autistic Society. This year, the ‘Tell us about your care’ partnership will make it easier for our charity to pass on information directly to the regulator about the experiences and needs of autistic people and their families. The information will also be used as a way to gather best-practice examples in order to help others improve. We’ll be collecting feedback from autistic people and their families and carers via our Autism Helpline, services, and volunteerled branches, as well as asking for input from professionals and the wider autism community. Carol Povey, Director of the Centre for Autism, said, “We’re pleased to be part of the partnership and to have the opportunity to help make sure that autistic people’s views and experiences of social care are heard, along with those of their families, carers and professionals.”

Share your views at www.cqc.org.uk, email enquiries@cqc.org.uk or call 03000 616161

SUMMER 2017 • NEWS

5,000 people responded to the survey

Autistic people and families share their views A recent survey of around 5,000 autistic people, families and autism professionals will help our charity to better understand the needs of the people we support. The results about daily life were no surprise. Hardly anyone said they thought the public and businesses have a good understanding of autism. Likewise, the results show that isolation and loneliness are widespread among autistic people and their families, and that autistic people and their families struggle financially more than the national benchmark. The topics autism professionals most want to know more about are stress and anxiety.

Of the services we provide, autistic people and families value the work we do to improve public understanding and our website the most. Professionals who responded also valued the website the highest. Most autistic people and families agree our charity upholds its values, though families more so than autistic people. When asked for the one thing they’d change about our charity, the most popular answers were access to country-wide and local support and ease of initial access and contact with us. If you took part, thank you. The results will help to inform how our charity shapes support for autistic people and their families.

BOOK YOUR TICKETS FOR THE AUTISM SHOW 2017 The national event for autism returns to London, Manchester and Birmingham this June. Attracting over 10,000 parents, carers, professionals and autistic people, the show offers specialist advice, information, products and services. This year’s speakers include Dame Stephanie Shirley and Cheryl Gillan MP. Book at www.autismshow. co.uk or call 020 8882 0629. Quote NAS17 for members’ discount. Children under 16 go free. YOUTUBE STARS DONATE £3,200 THROUGH VAN AUCTION This spring, Vloggers Alfie Deyes of PointlessBlogVlogs, and his friends Dave Erasmus and Sean Elliot converted a Ford Transit van into an ‘adventure van’ and sold it on eBay to raise funds for our charity. Their charity choice was informed by their fans, many of whom told them about their experiences of being autistic. Our thanks to Alfie, Dave and Sean. AUTISTIC SESAME STREET CHARACTER BECOMES 3D First introduced as a ‘2D’ character in the Sesame street storybooks, Julia is so popular that she has been made into a real muppet for the live action TV series. The show’s creators want Julia to be a character in her own right, but also to educate children about autism.

Will you be a Really Useful Engine? On 23rd September, join our autism-friendly Thomas & Friends 3km sponsored walk and get free tickets to Drayton Manor Theme Park! Sign up at www.autism.org.uk/allaboard, call 0808 800 1050 or email fundraising@nas.org.uk. Meet Sir Topham Hatt in real life! YOUR AUTISM MAGAZINE

NEWS • SUMMER 2017

Our local branches will benefit from the grant

Branch inputs on chew product

GARDENS GRANT FOR OUR LOCAL BRANCHES The National Garden Scheme (NGS) has given their Health and Wellbeing Grant to our charity this year. With open gardens across the country, the NGS focuses on raising money for charities. The grant is for gardening-related activities – including growing gardens and allotments, and visits to gardens. Thirteen of our local branches will receive a portion of this funding as part of our own ‘National Gardens Scheme Grants for Gardening’. The chosen branches will be announced this month. Research already shows that gardening can have a significant impact on the health and wellbeing of autistic people. The grant will also mean we can achieve a better understanding of this area and the potential benefits of gardening for autistic people.

Family-run chewable jewellery company, Chewigem, has been working with our Dundee and Angus volunteer branch to develop a product for soothing and comforting people with additional needs. The company collected ideas from parents over several sessions and, together, they decided to develop a range of chewable stationery items, stored discreetly in a pencil case. Chewigem is now developing the prototypes, which they plan to show to the group before it goes into production. They also plan to donate a percentage of

proceeds from sales of the pencil case to our charity. Find out more at www.chewigem.co.uk.

Chewigem founder, Jenny Mclaughlan, with her family

CAMPAIGN CHALLENGES HATE CRIME Learning disability and autism support charity, Dimensions, is running a campaign to address the hate crime experienced by people with learning disabilities and autism.

According to a recent survey, 73% of this group have experienced hate crime. The #ImWithSam campaign aims to tackle this in various ways, including providing resources and support for schools, families and support workers, stronger laws for online disability hate crime, improved processes for investigating and prosecuting disability hate crime, and wider representation of people with learning disabilities and autism. The National Autistic Society is supporting the campaign. If you’re interested in finding out more, visit www. dimensions-uk.org/ imwithsam.

Hate crime can ruin lives

Processing time is something many people on the autism spectrum can struggle with. Our latest Too Much Information public awareness film follows Holly as she deals with the overload. Watch it now at www.autism.org.uk/tmifilm. The film has already had 6.2 million views

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NEWS • SUMMER 2017

Getting a taster of how sensory overload might feel

News in brief

WELSH SHOPPERS TRY VIRTUAL REALITY Our Too Much Information virtual reality experience (VR) has been on the road in Wales giving the public in Cardiff, Rhondda Cynon Taff and Carmarthenshire the chance to learn what experiencing Too Much Information can feel like. Hundreds of shoppers tried it and got a feel for themselves of how busy and loud shopping centres can be for many autistic people. The VR experience was created in consultation with autistic people and aims to give people a flavour of how overwhelming an everyday setting, like a shopping centre, can feel by emphasising the sensory input of lights and

ALADDIN BECOMES AUTISM-FRIENDLY ALADDIN is the latest West End musical to put on an autism-friendly performance. With support from The National Autistic Society, the production on the 29 August will be specially adapted, with trained staff on hand, and dedicated quiet and activity areas. To book call 0844 482 5152. sounds. The National Autistic Society Cymru Senior Branch and Community Engagement Officer, Sarah Morgan, said, “The aim of our virtual reality experience is to improve public understanding of autism and we are grateful to everyone who has stopped by to have a go.” Find more about the VR experience at www.autism.org.uk/tmi.

AWARD FOR GET MAISIE HOME CAMPAIGNER Parent campaigner Sally Burke has won the Health Campaigner award at the Shelia McKechnie awards in London. Founded in 2005, The Sheila McKechnie Foundation aims to help develop a new generation of campaigners who are tackling the root causes of injustice. Our charity nominated Sally for the award for her Get Maisie home campaign, which she started to make sure that young people on the autism spectrum like her daughter could get the right help from mental health services locally.

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Sally said, “I was thrilled to be nominated and attend such a prestigious awards ceremony and absolutely speechless that I’ve won! […] All I wanted to do is raise awareness that children with mental health issues in the Hull and East Yorkshire area were forgotten about […] All children regardless of their illness or post code should receive excellent care.” Her local MP Alan Johnson commented, “I can testify to the effectiveness and determination of Sally, who campaigns so brilliantly because of her experiences and wisdom rather than any formal training. Sally’s daughter Maisie has been let down by some elements in the NHS but she’s never been let down by her extraordinary family.” Sally receiving her award

2017

BETTER ACCESS TO FOOTBALL GAMES Aberdeen Football Club has signed up to take steps to achieve the Autism Friendly Award, and become more accessible to autistic people and their families in Scotland. The club already offers an autism-friendly box, but staff will also be making additional adjustments – such as introducing quiet hours and providing chill out zones.

WHAT DO YOU THINK OF THIS MAGAZINE? Your Autism Magazine is yours, so it’s important to us that it’s bringing you all of the latest news, advice and information you’re interested in. Let us know your thoughts about the magazine and your experiences of being a member by 8 June. As a thank you, you’ll be entered into our prize draw to win a £50 Amazon voucher. To enter and for full Ts and Cs, visit www.autism.org.uk/membersurvey.

Research in focus

Bringing you news of the latest research into living and working with autism

Cans of worms and Russian dolls Dr C Ian Ragan, Director of The National Autism Project (NAP), explains their latest findings and the challenges of working out where to invest money on autism research. Simple questions do not always have simple answers. Dame Stephanie Shirley launched the National Autism Project over two years ago to tackle her simple question about how money for autism research should best be invested. To answer this, you need to know about autism practice, whether practice is “effective”, what “effective” actually means and who decides it. You also need to assess the quality of the evidence supporting claims of effectiveness, which interventions make economic sense, where the gaps in knowledge are, how the gaps could be addressed and prioritised, and who has the responsibility for carrying out the research. Then you have to find the money. Each of these cans of worms, when open, reveal other cans inside, like Russian dolls. NAP asked Professor Martin Knapp of the London School of Economics and Political Science to undertake a literature survey of the effectiveness and cost-effectiveness of interventions in autism. There was a danger of equating literature noise with the importance of the topic and neglecting areas considered relevant but not yet supported by published work. So to guide topic selection, the project’s strategy board recruited a group of subject area experts, and an autistic advisory panel of autistic self-advocates, some of whom were also experts. Martin described the autistic advisory panel as ‘productive irritants’, a label they now bear with

Tough decisions: how to invest scarce resources

pride. These two groups served to point the LSE team towards neglected areas, to help in the interpretation of the literature analysis and to guide the development of the project’s conclusions and our final report. In its latest report, the project found that support for autistic people is not based on the best available evidence. This results in an unacceptable human and unsustainable financial cost, some of which arises from inappropriate use of scarce resources, inadequate training, lack of knowledge, missed opportunities, poor co-ordination of services and desperate attempts to remedy past failures of care. The limited investment in research to fill the many gaps in evidence exacerbates this problem and provides fertile ground for the growth of

unproven interventions that can be expensive and even harmful. The title of the report, The autism dividend: reaping the rewards of better investment, encapsulates the project’s view that concerted action to address this failure will result in better outcomes for autistic people, and in a more cost-effective manner. The report is endorsed by leading charities and experts in the field, strengthening our call for Government to implement the recommendations on practice, and for research funders to commit to a substantial increase in autism research spending focused on building a stronger evidence base for what works. ● Find out more at nationalautismproject.org.uk.

YOUR AUTISM MAGAZINE

RESEARCH • FOCUS Social isolation can mean greater risk of experiencing stigma

How to manage anxiety for young people King’s College London have produced a set of guides to support autistic people and their families with recognising and managing anxiety. Severe anxiety can be a major issue for autistic children and adults, which greatly affects quality of life. Finding ways to support people with anxiety is a high priority. But limited NHS resources mean that services to do this are scarcer than they should be. Funded by Autistica, researchers at King’s College London, led by Professor Emily Simonoff and Ann Ozsivadjian, have developed a set of educational guides for children, adolescents and young adults on the autism spectrum and their parents and carers. The guides

offer ways to recognise and manage anxiety better. Parent feedback to date is encouraging. One parent said, “I love it... it provides strategies a parent/carer can always use […] It made me feel that someone understood my child’s difficulties.” The materials are currently being evaluated. If this process shows them to be useful, they will be made widely accessible to families without having to wait for referral or assessment by clinical services. For further information about the study please email rachel.kent@kcl.ac.uk.

The guides will offer a ‘selfservice’ option for parents waiting for clinical services.

SUPPORT FOR CARERS WHO FEEL STIGMA Research into how to boost the mental health of the caregivers of autistic children has found many experience stigma of some kind. Funded by Autistica, the research by Dr Chris Papadopoulos of the University of Bedfordshire aims to develop the first ever stigma protection intervention for family caregivers. Part of the research is a literature review of the stigma that caregivers experience. Published later this year, the review will show that caregivers commonly experience public stigma, caregiver stigma and/or self-stigma across a wide range of contexts. It will also show that stigma is more likely to damage caregivers’ wellbeing if they are vulnerable to particular challenges, such as social isolation and poor self-esteem. These findings will be used to inform the intervention, which Dr Papadopoulos hopes will benefit caregivers, their families, and the people they care for. You can share your experiences of caring to help inform the research at http://tinyurl. com/autismstigma. To learn more, email chris.papadopoulos@beds.ac.uk.

Find out more • Read the autism research in the Autism journal at aut.sagepub.com. Members of The National Autistic Society get a 30% subscription discount. • You can find information about approaches and research at www.researchautism.net.

YOUR AUTISM MAGAZINE

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

Reasons behind school refusal may be complex and varied. MY 15-YEAR-OLD son refuses to attend school. We’re getting basic home tuition only. Are there any other avenues I can pursue? He won’t consider a different school. – Maz IF YOUR SON refuses to attend school, you could look at him attending a different kind of setting to give you a break such as a day centre or support service for part of the time. By not labelling it as ‘school’ your child may accept this different approach to tuition and learning. – Katie* I SUGGEST working with

the school to find the reasons for the refusal. You could also ask for an assessment or re-assessment of needs as your son may need more or different support to what was being provided. We often suggest getting the child’s absence medically certified to encourage alternative provision and to prevent the parent being in breach of their duty to educate their child. But as it sounds like your son is receiving some support already, this may not be necessary. You can contact our free Education Rights Service for more advice on 0808 800 4102 (leave a message and we will call you back). – Carla, Education Rights Adviser

* Katie wins a copy of A girl like Tilly: growing up with autism by Helen Bates and Ellen Li.

IF YOU’RE HOPING to get him back into school, you’ll need to work with the school to identify the reasons for his refusal. Could it be bullying, difficulty socialising, unstructured times of day, the environment, or lack of understanding from teachers? The key thing is, as autism is generally considered to be a disability as defined in section six of the Equality Act 2010, the school has a duty to make reasonable adjustments – like a quiet room, slight changes to lessons or timetables or letting him change classes a bit early to avoid crowds. Whatever it is needs to be tailored to his needs. Staff should be receptive to your ideas, but they might need training. – Andy, Schools Exclusions Adviser. • Find school refusal

strategies at www. autism.org.uk/school refusal. • Working together with your child’s school by Autism Education Trust’s (AET) may be useful. Find it at bit.ly/2ogvHJb

Help me next!

My lad really wants to get out in the garden. I want to make it a safe, autism-friendly and pleasant place for him to be. Does anyone have any tips? – Aimee, via Facebook SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of A boy made of blocks by Keith Stuart

Post your problems or answers on Facebook YourAutismMagazine, 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

YOUR AUTISM MAGAZINE

How do I...

transition to secondary school?

12-year old Erin didn’t find the transition to secondary school as bad as she thought she would. She explains what, in her experience, helped to make the transition as smooth as it could be.

BY ERIN SAGE

’d been at my primary school for seven years and was accustomed to the buildings, staff and everyone around me. I‘d had the same teacher for four years and had all the support I needed. But when the time came to decide on a secondary school, things were actually okay. Although I like doing things in a traditional way and in a routine, I also like new, fresh starts and a chance to make myself better. So the thought of what a new school could offer me made me feel positive.

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Be involved from the start I was taken to have a look at the two secondary schools in my area while I was in Year 5 and then again in Year 6. So it wasn’t all too much to take in and I was quite relaxed. We went to open evenings at the two schools which were really busy. Although I was excited and fascinated, it was difficult to relax. I spent a lot of time smiling, but avoided looking at anyone. Then we did a private tour, which was better. We met with the head of SENCOs at one of the schools. I was included in all of the meetings, and although I felt a bit awkward, I could tell that the teacher we met knew so much about Asperger syndrome that I felt like I trusted her right away.

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Get all the information you need to make a decision

Making the decision between the two schools was difficult, so we sat down as a family and listed all the pros and cons of each one. Once the decision was made, my primary school and my parents made appointments for me to visit the school – just for half an hour at a time. I sat and ate lunch with a teacher so I could see the dining room at its full capacity. I visited and watched the classroom change-overs so I could hear the bell ringing. I saw a break time and got the chance to walk round the school when it was quiet. After every visit I wrote down any questions or requests I had that I hadn’t been brave enough to ask for my mum to ask the SENCO.

Talk about feelings

Towards the end of Year 6, I became part of a small group at my primary school and we would talk about our worries and feelings with a teaching assistant. She gave us a little book which contained advice and tips on what to expect and importantly, how to respond. At my new school so far, everything is going really well. There are of course some

HOW DO I? • FEATURE

issues, mainly with not knowing how to respond to other children, there are so many personalities and it can get very busy. What helps me is talking it over with my family as soon as I get out of school and getting help with a resolution.

Ask for information in advance

Over the summer holiday, my new school emailed me my timetable. This was great because I was able to colour code it and put copies on my wall. I was also sent my profile. This is a piece of paper that all my teachers would have before I got there which explained my likes and dislikes. This was brilliant because I knew then that I would not be put in any awful situations – like the teachers telling me to ‘look at me when I’m speaking to you’. Something which I am just unable to do.

Don’t brave it alone!

On my first day, I went in with my friend from her house so we didn’t have to worry about meeting somewhere and we could go in together. I was given a timetable and map along with everyone else, but I felt confident because I had already seen these before. I was given a locker and lots of books but it was all very exciting.

Thorough planning can make a big difference to how prepared you feel

Push for support and flexibility My best friend was also going to the same school and before we started, our parents both asked if we could be kept together in our tutor group. Thanks to both schools working together, this was made possible. At school now, the SENCOs are very proactive. I find it almost impossible to ask for help, especially when I am upset, but the school has teachers specifically looking out for us and one of those teachers was coming to find me every week to make sure I was okay. Now I go to see her every other week. I keep a list in my head of anything that is bothering me and she will go through the types of things I can say to people to help me resolve things. ●

Was this advice helpful? Let us know at YourAutismMag@nas.org.uk.

Useful resources

• Erin found Moving on! Activity pack for Year 6 children published by I CAN (icancharity.org.uk) really helpful. • Get information and advice about school transitions at www.autism.org.uk/school-transition • For advice on your rights, contact our Education Rights Service on 0808 800 4102, leave a message on our answering service and we’ll call you back • Find more advice and tips in the education supplement.

YOUR AUTISM MAGAZINE

FEATURE • CHRIS PACKHAM

honest Freedom to be

Chris has experienced social difficulties throughout his life

Naturalist and TV presenter Chris Packham received a late diagnosis of Asperger syndrome in 2005. In the wake of the publication of his memoir, Fingers in the sparkle jar, and on the cusp of making a programme about autism to be aired on the BBC later this year, he tells us why he’s talking publicly about autism now. B Y E L E A N OR N E W L A N D

hat I’ve found through my campaigning is there are a great many taboos where people have a presumption of fact. Either something was a fact a long time ago, or it’s a lie that’s been around for a long time which hasn’t been questioned. I’ve found that by raising these issues and giving them a public profile (which can be quite uncomfortable and difficult due to the criticism and hatred that comes back), you make very rapid progress. Because you’re bringing the issue to an audience, through that discussion you get positive change. I’ve seen that work as a methodology. It wasn’t a deliberate intention that the book would have a positive effect on the world of autism, but when people commented that I’d been forthcoming about some of the aspects of my Asperger’s, I thought maybe I could turn that to good use. If I have a small platform through the book, then I can promote some awareness about this and we can see some positive change. I’m not really very fond of human beings, but I rather like obsessive personalities and autistic kids who are obsessive, because I was one. I can see where they are coming from and how they’re

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trying to operate. And their lives are not necessarily easy. So I’m speaking up about it because I’ve seen it work for other things, so maybe it will work for this. DEALING WITH SOCIAL DIFFICULTIES T he greatest discomfort for autistic people can be the social one. For me, particularly after I became aware of it, this social discomfort led to constant self-persecution because I was failing to manage those social interactions. I blamed myself. Initially, I was confused about why people behaved the way they did. T hen, I was angry about the way they excluded me and treated me differently, because I was different and they perceived that. T hen, I got to a point when I thought, ‘Okay, I can’t manage them, so I need to manage myself so that I can get what I want’. Of course, that’s not an easy process. I was teaching myself along the way and I got things wrong all the time. It was torturous and I hated myself. I remember on my 18th birthday, I got a bus and wandered around the New Forest in the freezing cold on my own as a means of punishing myself for the failure of various social ventures at the time. It was a desire to beat myself into getting things right.

Having mental boltholes is a necessary therapy. I think the security of isolation can be really important. You can’t fail there, as it’s just you. For me, it’s walking my dogs in the morning. It’s an hour when I’m entirely on my own and I’m as comfortable as I can be with the two animals that I love most in the world. T here’s a security to that place. Spending time on my own provides a real recharge. It’s probably the closest I come to relaxing. T hen as you grow and understand more what you’re doing with more definition, you build relationships with people whom you can interact with. And you don’t need to hide as much. But I know that’s something that I can do which many others can’t. We need other people to provide autistic people with that opportunity and security. I feel better about making the BBC programme now than I have done before. I’m confident that I’m working with people who understand what we’re trying to do. I’m quietly confident it will have a positive effect. THE BEST THING ABOUT BEING AUTISTIC? T hat’s a good question. I’m tempted to say freedom. But not in a glibway. One of the things it allows me to be is independent. I care what people

“I don’t care what people think because I have a sort of stoic independence.”

“Do we feel things with a greater depth, going to darker places and lighter places?”

think if it has a purpose. I don’t care what people think if it doesn’t have a purpose. When it comes to things like the campaigning, I just can’t be intimidated. They can say and do whatever they do, and all it does is throw more fuel on the fire. It simply cannot reach me. And this is what surprises me. If I was campaigning against myself, I would research autism and figure out that the best way to deal with me is not to throw insults because it’s a waste of time. I don’t care what people think because I have a sort of stoic independence. And that provides me with the freedom to be honest. We don’t like lies. We learn to lie and can be manipulative, but we have an independence of thought and voice. But then again, you could argue on the other side that I am ‘antisocial’ and I’m better on my own 8 and some people might say that’s the opposite of freedom. You’re not free to go to parties or on the tube, or things like

Find out more

that which cause distress. Something I wonder is whether the depth of feeling and perception runs deeper for autistic people. Because of the intensity, do we feel things with a greater depth, going to darker places and lighter placesMWatching my two dogs run across a field I can feel euphoric. It’s the depth and height 8 the extremes of feeling generated by that perception. I love and hate things. I can be absolutely unforgiving in the power of that emotion. We’re that deep in love with something that when that love goes wrong, it’s the hardest problem to solve. Þeople say to me, ‘It’s a shame so-and-so is really ill’, and I say, ‘WhyMI don’t know them so it’s of no consequence to me’. So they say I have no ability to empathise and that I don’t care. But that’s not it. If you told me a person that I loved was dying, the result would be catastrophic. That’s the depth of the emotion. SPEAKING OUT NOW In other interviews, people have asked me about why I decided to ‘come out’ about my autism, which strikes me as a little insulting. I don’t fear persecution because of what I’ve said. I fear misunderstanding. S y job is to try and reduce this misunderstanding. I’m making this programme for the BBC and people have said to me, ‘That’s a brave step’, and I’ve thought, ‘Is itM It’s not really’. What I’m going to try and do is show the positive aspects of

the condition, explain as honestly and completely as I can the difficulties that it can present, and ask the public to help overcome those difficulties. I want them to help to solve the problems in workplaces and environments so autistic people can function and be more fulfilled. Only by being honest and clear about these issues will the viewers understand. One of the problems we have is that the spectrum is so broad. What we’ve got to get people to see is that this condition is by degree, and equally the positive and negative aspects are by degree. And for many, the aspects are such that assistance, understanding and awareness can make a difference. Þeople may be in a precarious place, but there may be aspects of their character which are in a wonderful place. If they are not able to fulfil those aspects, and we are not able to see them used for our social benefit, what a tragic, terrible waste of enormous skills and abilities. ●

Sam Hayes, a Year 12 student at The National Autistic Society’s Robert Ogden School, asked Chris some questions about eating insects and the future of the panda. Read Chris’ responses at ˇ ˇ ˇ Éa• ¦ ismÉ{ r^É• kÊ chris} ackham.

• Read more from Chris about the book, his depression and his favourite animal at ˇ ˇ ˇ Éa• ¦ ismÉ{ r^É• kÊchris} ackham. • To win a copy of Fingers in the sparkle jar email ¸ { • ra• ¦ ismma^N| asÉ{ r^É• k by 8 June quoting ‘sparkle’. • Join Chris in spreading understanding of autism – choose a pledge at ˇ ˇ ˇ Éa• ¦ ismÉ{ r^É• kÊ¦ miÉ

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SUMMER 2017

FEATURE • AUTISM-FRIENDLY PERFORMANCES

How to make a show

autism-friendly More and more public places and shows across the UK are starting to respond to the needs of autistic people and their families with autism-friendly hours and performances. Richard Oriel and Nancy Shakerly, who work on Disney’s The Lion King and Aladdin, told us what this involves.

How have you and the rest of the team adapted the productions in order to make them autismfriendly? We worked with our colleagues in New York (who created the first autism-friendly performances of the show there), and then looked in depth at every aspect of the show and the environment at the Lyceum Theatre. Some of the adaptations were technical – removing strobe lighting, adjusting special effects so they are not as loud or startling and generally taking the sound levels down. Some are about creating a more welcoming space – so the house lights don’t go down completely, we make sure that there is always some light in the auditorium in case audience members want to leave their seats during the performance and use one of the designated chillout areas which have been specially

created in the foyer spaces. Then we had the idea to have some of the cast members come out on stage at the beginning of the show to introduce themselves and welcome the audience. We consult with The National Autistic Society on all aspects of the process and they run training with our theatre teams, both front of house, company, cast and volunteers to make sure we are able to deliver the best and most appropriate show possible on the day. Do the actors themselves perform differently in an autism-friendly performance? The show is performed in exactly the same way as a regular show. The main changes we make are to the environment in the theatre. Our cast and crew absolutely love the autismfriendly performances. For many, they are one of the highlights of the year. It’s amazing to be able to see and hear the audience’s reaction – usually the house lights are down and actors can’t see the people they are performing to.

Are there any characters or parts in the show which go down particularly well with your autistic audiences? People favour different characters for different reasons. Rafiki in THE LION KING is always a favourite as her vibrant make up and costume is so distinctive. The warmth of her character tends to resonate well with the audience. Why do you think it’s important to run autism-friendly performances? We welcome patrons with autism to any performance, all year round, but we feel it is important to offer something specific to those who would prefer a more relaxed environment. We’re proud to be a part of initiatives that increase access to theatre and break down perceived barriers to engagement in the arts, and support The National Autistic Society in their mission to raise public awareness and understanding of autism. We’re happy to assist other productions so they can follow suit.

“It is always thrilling to hear that people have felt able to come and enjoy the show in a judgement free environment.” 22

SUMMER 2017

Aladdin’s cave

Photography by Deen van Meer © Disney

“It’s amazing to be able to see and hear the audience’s reaction.” What kind of feedback have you had from visitors? Are there any particular comments that stick with you? We always receive a great deal of feedback from visitors – thanking us for the experience, but also giving suggestions on how we might adapt the performance next time. It is always thrilling to hear that people have felt able to come and enjoy the show in a judgement free environment. One of the most satisfying things is to hear about families who have been able, for the first time, to enjoy a show all together as a family, with no-one left out. If someone has very specific needs, how can they go about getting these met? Both venues have dedicated access booking lines, so you can speak to a member of the theatre team and discuss their requirements. On the day,

both the Lyceum and Prince Edward Theatres have access champions who are on hand to assist. For some autistic people, the extra noise at a performance can mean that it is actually less accessible to them than a regular show. How would you recommend these people come to see the show? This was a learning for us early on. For many, wearing ear defenders can help and of course patrons are welcome to leave their seats if they find the level of noise difficult at any point.

It may be that for some people, they are more suited to attending a regular performance of the show, when the audience is quieter. What’s your favourite part about the role you play in the process? In advance, it’s a great pleasure to work with all the different departments in the theatre towards an exciting and positive event. The day itself is a wonderful experience and a truly rewarding day for all the cast, crew and orchestra as everyone has such an integral part to play. ●

Find out more • Tickets are available for the first autism-friendly performance of Aladdin on Tuesday 29 August 2017. Book at www.aladdinthemusical.co.uk/autismfriendly or call 0844 482 5152 • Check www.thelionking.co.uk/autismfriendly for the latest dates for The lion king • We want all public spaces to sign up to being autism-friendly. Find out more at www.autism.org.uk/autismfriendly.

YOUR AUTISM MAGAZINE

OPINION • SKY BOSWELL

Intelligence

≠ no problem

}

Sky Boswell received a late diagnosis of Asperger syndrome when she was 56. She draws on her own experiences to explain why she believes mistaking high intelligence for ability in other areas can mean autistic people like her are desperately misunderstood. BY SKY BOSWELL

Photo © Krystyna FitzGerald-Morris

here’s a common misconception that high intelligence somehow means a person is capable of anything. But just as one would not necessarily expect a gifted athlete to also be gifted at applied science, creative writing or complex mathematical equations, persons of high intelligence are not necessarily great at social interaction – or even gifted in more than one area. I wasn’t diagnosed until I was 56, so life was a struggle. As a child I knew I was somehow not the same as people around me. I was continually frustrated that I could not do things others found easy, and because I adopted the popular misconception about intelligence equating to ability, I felt guilty and that I was to blame, and that became an internal voice that’s still hard to shut up even now. DAMAGING NOTIONS The problem with such misconceptions is that once high intelligence is spotted or revealed, one is expected to be able to turn one’s hand to anything, and do it extremely well. The old chestnut about the ‘nutty professor’ is an example of how people are in awe of that person’s particular skills, but at the same time baffled that they seem a bit at sea in other ways, notably with social interaction. The idea that the difficulties of autistic people like me are a matter of

24 S U M M E R

2017

Sky dressed for her Kate Bush tribute act choice is a huge barrier to get over and why so many people with autism fail the Personal Independence Payment (PIP) test. The panel at my first assessment did not believe there was anything ‘wrong’ with me. All they saw was someone who was intelligent and articulate. Part of their report referred to the fact that they believed I was capable of doing anything if I set my mind to it, inferring that it is a matter of choice how I react to adverse situations. I believe it’s absolutely crucial to have a real autism expert on such panels. I now have to restart the process due to the first panel’s decision being overturned on a point of law. I’m worried that, again, I’ll fail to persuade the new panel that I have a condition that means I need support. Life for me is often like this: I feel like a pinball careering around a machine not knowing what’s going to happen next. Most days I get up at five

as I sleep badly. I put my porridge on the stove, but quickly get so absorbed in something else I don’t notice time passing. I’m alerted by the smell of scorched milk as the pan’s bottom is about to burn through. Or, I’ll drift back into the kitchen in an hour to see that I never even switched on the heat. If I have things to do or appointments, I have to keep notes in a diary, but then I forget to look at it. I don’t have any kind of alarm because alarms make me jump and cause my anxiety levels to rise. I have a big, yellow wipe-clean board on which I can write things. But I still forget everyday stuff like taking my beta blockers and vitamins. If I see the pack or bottle in front of me I’ll remember, otherwise it’s just gone; no memory there of what I need to do. I have worked in the past, but had a series of problems with lack of understanding and reasonable adjustments from employers. I suspect my previous employer laid me off because I told HR that I was close to getting a diagnosis, which would have meant they would be legally bound to make adjustments. I could never live alone; I never have — I need someone around to remind me about things I need to do, or to do

SKY BOSWELL • OPINION

“ The idea that the difficulties of autistic people like me are a matter of choice is a huge barrier to get over.” — Sky

“We are square pegs who need square holes, not to have our corners whittled away”

YOUR AUTISM MAGAZINE

FEATURE • OPINION

“I feel like a pinball careering around a machine...”

things for me. When something happens which breaks in on my world, it throws me completely. LIVING WITH ANXIETY As well as difficulty with executive functioning, I’ve suffered from anxiety all my life. Autistic adults are more likely than average to experience debilitating mental health problems such as anxiety and depression. A glance through some old primary school reports show comments from teachers such as, “worries too much” and “...enjoys worrying.” I don’t think anyone enjoys worrying! Anxiety is not something you choose. Its effects are horrible. Having high anxiety means I can’t do what others take for granted. I don’t go to restaurants, pubs, parties, theatre, cinemas or art galleries because I can’t be sure what I will find. Places where there are likely to be lots of people close together are very distressing for me. I don’t go to pop concerts even though I’d love to, but I can sing on stage when doing my Kate Bush tribute act because I’m in control. This difference is huge. Society tells us we must be positive, and that a positive attitude can change things for the better. But

SUMMER 2017

because many people with autism have low self-esteem, especially us older ones who lived in a world where autism was unheard of, we have struggled against fierce odds to survive. When we see stories of how brilliant life is for some others, it makes us feel a bit of a failure – again. There’s also a bit of, “I never had that kind of support”, and sometimes you just feel like you are still in a minority, still invisible. Which is why I welcome so much this opportunity to talk about my own experience. The myth of high intelligence equalling high ability in other areas needs to be challenged. Yes, autistic people can work and be valuable

members of society, but we need the right conditions in order to do that and so often those conditions and the understanding necessary to support us just aren’t there. Just because you can perform a task once, it doesn’t mean you can do it seven hours a day without high personal cost. People like me are struggling to get the ESA and PIP we need, because the assessment process is not set up to recognise our unique difficulties. To use an old expression you don’t hear too often nowadays, we are special – and special people need special conditions and understanding. Square pegs who need square holes, not to have our corners whittled away so we no longer know who we are. ●

“Just because you can perform a task once, it doesn’t mean you can do it seven hours a day without high personal cost.” — Sky Find out more

• Sky draws inspiration from the singer Kate Bush and performs in a tribute act. Read more on Your Autism Extra – sign in at www.autism.org.uk/digitalyam.

FEATURE • MY STORY

My story

The Bickerstaffs: Aaron (top left) and Kathy, Nathan (bottom left) and Curtis.

&Nathan

Kathy, Aaron, Curtis

The Bickerstaff family live in Belfast. Parent-carer, Kathy, told us about daily life at home, and how she and Aaron have learnt to make the most of life.

ur boys, Curtis and Nathan, are 18-yearold identical twins. I’m their full-time carer, and their Dad, Aaron, is a self-employed builder. Nathan loves music – classical, pop, nursery rhymes... anything really. He listens using apps on his iPad and likes a little dance now and again. He also likes eating out. Curtis prefers quiet places, going to the beach and having picnics. Both the boys love being out and about and going swimming at the local pool – especially sitting in the Jacuzzi! We spend a lot of time at the leisure centre and the staff there are fabulous. They have known Nathan and Curtis for years and will go out of their way to help. If Curtis gets a bit anxious they’ll stay calm and help him to settle again. They would never ask us to leave or anything like that. The boys don’t interact much with one another. Curtis is the more domineering one. He likes everything to be just so. He needs to control the environment and the people in it, which Nathan finds hard, as sometimes it means Curtis bothers him. But we have a space in the house that is just Nathan’s where Curtis knows he can’t go. Like all brothers, they need their own space away from each other sometimes. FIRST SIGNS AND DIAGNOSIS Both boys were slow developers. They were slow to crawl, Curtis babbled a bit but didn’t develop

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language. The doctor just said boys are slower developers. But I could see the other babies we met at parent groups were different and I knew something wasn’t right. Eventually, the twins were seen by a paediatrician. After a short assessment, she said she thought there was “something wrong with the boys’ brains”. I was horrified. Looking back, the way it was delivered wasn’t very diplomatic. Soon after that, the boys started at a special nursery three mornings a week. They were assessed and diagnosed as having autism and severe learning difficulties. We were devastated. Friends and family were supportive, but there’s nothing anyone can do to make it better. We were given hardly any advice about what to do next. There was no early intervention for autism locally. The help just wasn’t there. We had to just look for things ourselves. That was extremely difficult. When we did find professionals, in general they weren’t really equipped to deal with autism and severe learning difficulties together. GROWING UP Nathan and Curtis started at a school for children with severe learning difficulties. They did okay but Curtis’ speech stopped around the age of five. I was told by the staff and the doctor this can happen, and that it was very common. That was devastating. At the age of eight they went on to a different school which they still attend. They will finish next summer.

When the boys were growing up, lack of sleep was very difficult. When one was asleep the other would often be awake. Eventually, we had to put them on sleeping medication, which improved things a little. We were lucky that their behaviour wasn’t particularly challenging until they got a bit older. TEENAGE YEARS Curtis went through a very bad stage last year. It’s so difficult when the boys have no speech and can’t tell you if they’re feeling unwell or if something’s bothering them. They use Makaton and PECS, but it’s been hard. Especially with all the changes going on in their bodies. If Curtis has a meltdown at home, as long as he’s safe and not self-harming, I would just leave him to let him calm down, to keep myself safe. If he’s self-harming, like biting his hand, we’ll give him a chewy tube. But we’re very lucky as he is quite easily re-directed. It could be so much worse. For managing change, we use a ‘first’ and ‘then’ schedule. That’s a very basic schedule – for example, ‘first shop, and then home’; ‘First dinner, then park’. To make these, we use the same PECS symbols they use at school, or photos of places. Photographs are generally very useful for communication. Because they’re both six feet tall now, it’s impossible for me to take Nathan and Curtis out on my own. So, Aaron tries to manage his work around when they are at home so

MY STORY • FEATURE

“It’s so difficult when the boys have no speech and can’t tell you if they’re feeling unwell or if something’s bothering them.”

FEATURE • MY STORY

we can take them out together. They’ve just started at a new respite centre so we can have a couple of days off each month. Nathan has stayed there a couple of nights and Curtis just one so far. Nathan copes a lot better with change than Curtis. WHAT NEXT? The boys are 18 now, but won’t finish school until next June. I heard about the plans for The National Autistic Society Northern Ireland’s Autism Centre through a friend and thought it sounded like a dream come true for families like mine whose children are going to be leaving school soon. Autism and learning difficulties don’t just stop when they become adults. It’s been so badly needed for so long – a safe place where the boys will be stimulated and given the chance to learn. I’m now on the fundraising committee. We meet up once a month and I’ve made some new friends – it’s great to speak to other parents as it helps you find out what’s going on locally. As Curtis was recently diagnosed with epilepsy and he’s had a few seizures, I’m reluctant to leave him, so unfortunately I’ve missed a few meetings recently. But we’re all fundraising like mad! My sister-in-law works in a public house and has done a few fundraising things for us. Two girls who work in Nathan’s school did a zip wire across the Lagan and raised a lot of money. We’re hoping to get a team together for a Lagan boat race. We did bag packing at Christmas at Sainsbury’s… lots of things. We’re just so keen to see the Centre open. A LITTLE GOES A LONG WAY Over the years, I’ve had some great neighbours. If I was ever out walking with the boys when they were

Share your story

Nathan and Curtis will leave school next year.

“If I see someone who needs help, I ask if there is anything I can do.” younger and Curtis kicked off, they would come up and ask if they could help. Usually there wasn’t much they could do, but it was just lovely to know that they were there. I’ve had some good social workers over the years who were great to talk to, but there just isn’t enough funding to get the consistent support you need. If I see someone who needs help, I ask if there is anything I can do. That’s what I would want if Curtis was having a meltdown. You need to offer to help, as a lot of people are very strongly independent and won’t ask. In that moment, it can make such a difference. Don’t just walk on past or stand and stare. Don’t say that’s a badly behaved child. Things are improving and people are starting to understand more. But there is still a long way to go. ADVICE FOR OTHERS There have been times when I’ve got upset, but you learn over the years

that feeling sad doesn’t do any good. You really just have to get on with it and try and make the best of life. To try and make the boys as happy as possible. Everybody says I don’t know how you cope. But you have to and you just get used to it. When your children have special needs, you meet some fantastic children. Some of the other children at the twins’ school are life-limited, but they just have the biggest smiles on their faces. For us, the boys’ transition plan has to be the next thing. I find if you try to look too far ahead it becomes quite difficult. I take it every day at a time. That’s the best advice I can give, and also don’t be afraid to ask for help. When my boys were young, we tried so hard to find help, but it just wasn’t there. But now there is much more. Also, enjoy your children! Autism affects the two boys so differently. Every child is different and unique, so treat your children as the unique people that they are. ●

• Would you like to share your story about any aspect of living or working with autism? 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. • To find out more about The National Autistic Society Northern Ireland Centre or make a donation, visit www.autism.org.uk/nicentre or email shirelle.stewart@nas.org.uk.

SUMMER 2017

ADVICE • PIP CRITERIA CHANGES

Knowing the rules will help you put in the most informed claim you can

What you need to know: changes to PIP criteria Personal Independence Payment (PIP) is a vital benefit for many disabled adults, helping them meet the extra costs of living with a disability. But the Government recently changed the rules around how they decide who qualifies, meaning it will now be harder for many autistic people to claim successfully. BY J A N E O W E N - PA M , W E L FA R E R I G H T S A D V I S E R

he changes to PIP affect any decision made on or after 16 March. If you already have a PIP award, you won’t be affected until you have to renew your award, which happens every few years.

What are the changes? For autistic people, the most concerning of the changes is to the mobility component of the ‘descriptors’ – the things PIP claimants have to prove are problems for them. The change is that some aspects of ‘planning and following a journey’ would no longer include situations where the person needs help due to ‘overwhelming psychological distress’. To qualify, claimants will need to show that they need help planning or following a journey for reasons other than psychological distress. If the claimant is unable to make any journeys at all due to psychological distress, they will still be able to qualify for standard rate mobility.

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“Claimants will need to show that they need help planning or following a journey for reasons other than psychological distress.” Example scenarios

enough for an award of PIP mobility.

To help you see what to expect from the changes, here are some examples of who would get what rate (and who wouldn’t) under the new rules.

2Roger

1Theresa

Theresa has a diagnosis of Asperger syndrome and severe anxiety and depression. She always needs someone with her when she goes out as she would become extremely distressed if she were to go alone. Theresa would not qualify for any PIP mobility as the highest scoring descriptor that applies is B, ‘Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress’, which only scores four points: not

Roger is autistic, he has not yet succeeded in learning how to use a map or bus timetable to be able to plan a route. Roger qualifies for standard rate mobility as descriptor C, ‘For reasons other than psychological distress, cannot plan the route of a journey’, applies.

3 Sally

Sally is autistic. She struggles with following directions and often gets lost. She is able to go to the local shops and to college alone because she has been taught and has practised these routes. She could not make an

unfamiliar journey alone as she would not be able to find her way. She qualifies for standard rate mobility as descriptor D, ‘For reasons other than psychological distress, cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid’, applies.

4Ahmed

Ahmed has a diagnosis of Asperger syndrome. He experiences severe anxiety and has not been able to leave his home for several months due to his difficulties. Ahmed would qualify for standard rate mobility as descriptor E, ‘Cannot undertake any journey

because it would cause overwhelming psychological distress to the claimant’, would apply.

5 John

John is autistic and has a learning disability. He cannot go out alone as he doesn’t understand how to find his way and would get lost. He qualifies for PIP enhanced mobility as descriptor F, ‘For reasons other than psychological distress, cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid’, applies. In the longer term, we hope that we will see challenges to how this new criteria is applied.

Find out more • Find out more about PIP and see the full criteria at www.autism. org.uk/PIP • For further support, contact our Welfare Rights Adviser. See www.autism.org.uk/welfarerights, or call 0808 800 4104 free (Monday-Thursday, 10am4pm, and Friday, 9am-3pm) to arrange a call-back appointment.

“If the claimant is unable to make any journeys at all due to psychological distress, they will still be able to qualify for standard rate mobility.”

YOUR AUTISM MAGAZINE

ADVICE • SOCIAL STORIES

Siobhan has used this approach throughout her son’s life

Using Social Stories throughout life

Social Stories were created by Carol Gray in 1991. They share social information that is missing because the child or adult has a different perspective of the world. BY DR SIOBHAN TIMMINS, APPROVED SOCIAL STORIES TRAINER

began to write Social Stories for my autistic son when he was three years old. I’ve continued to write them throughout his life. He has grown up with Social Stories and is now 25 years old. I’m still writing them today, as the more adult form, Social Articles, which I email to him with continued success. I fully expect to be writing them in some form into my old age.

absolute sense to me and still does today.

Why would a child on the autism spectrum need a Social Story? A Social Story shares missing social information. This information is missing because the child or adult has a different perspective of the world as a result of having a

“Many people only reach for a Social Story when they encounter a social response that is unusual.” I was drawn to Carol Gray’s strategy because of her phenomenal insight into the different, yet equally valid, perspective of people on the autism spectrum. The approach comes from a platform of absolute respect, not aiming to make a person neurotypical, but rather sharing social information, helping them to feel comfortable as themselves in an inhospitable world. This made

SUMMER 2017

different way of processing what’s around them. This means they may struggle to understand the gist of a situation, what is likely to be said next, what social language actually means, and what is likely to happen next and why. They may also be less aware of other people’s feelings, thoughts and needs and therefore may be less able to take them into consideration in their interactions.

How does a Social Story help? A Social Story patiently and respectfully provides this information by describing the relevant clues in life, building and clarifying the context of a situation and providing a comforting sense of predictability. It shares other people’s thoughts, feelings and experiences and links these to their reactions and expectations, explaining their behaviour. It does so in language that is always positive, literally accurate, and pitched at the exact cognitive level of the child or adult and therefore accessible to them. It works hard to engage the child or adult by considering their choice of interests and may include illustrations which highlight the content of the story. The result is a uniquely meaningful, patient, non-judgemental, respectful and reassuring description of life.

A Social Story should be non-judgemental

Social story I am learning to listen Listening is an important skill to learn. I am learning how to listen to the teacher. The teacher for my class is called Mrs S. Mrs S knows lots of things to tell me. Mrs S knows how to keep me safe. She knows good stories too!

Mrs S knows I am listening when I am looking at her. Sometimes I may find it uncomfy to look at Mrs S’s face. Mrs S understands that this may be uncomfy for me. Mrs S and I have made a plan to keep me comfy. This is okay.

How to write a Social Story You need to first abandon your own opinion or judgement of the child’s response and work hard to try to understand the situation from their perspective. Leave behind the thought ‘I know he understands…’! His perspective will lead to the missing information, and once this has been identified it can then be shared in the most accessible way for him. Carol Gray has defined ten criteria to guide safe and effective Social Story writing (Gray, 2015). Following them really helps the author to write a story that is accessible, safe and effective for the individual person. When you don’t keep them in mind, it’s easy to inadvertently stray into a story that just tells the child or adult what to do, rather than finding and sharing the actual social information they are missing. A guide to the criteria

can be found in Carol Gray’s recent book The new Social StoryTM book (2015) or on her website at www.carolgraysocialstories.com.

I may look at her for just a short time (count to three penguins) and then look away. In a little while I may look at her again.

Who are Social Stories for? Social Stories may be used across the spectrum for all ages and abilities, provided time is taken to research the individual’s perspective and the story is written accordingly. My son’s stories have changed in format, illustration, vocabulary and detail with him as he has grown and developed in language and understanding over the years.

What can Social Stories address? Fifty per cent of all Social Stories written for a child or adult should recognise and applaud his or her achievements, qualities and talents. Many people only reach

Looking for a short time and then looking away from someone’s face is called ‘glancing’.

When Mrs S talks to me I will try to glance at her face. Then Mrs S will know I am listening and I may feel comfy. Mrs S will be pleased with me.

YOUR AUTISM MAGAZINE

Use positive and accessible language

“Stories can be used throughout a person’s life, each one building on the last, and continually developing concepts.” for a Social StoryTM when they encounter a social response that is unusual, usually after other strategies have been unhelpful. I’ve written a large number of successful stories in response to a behaviour that demonstrated a misunderstanding or frustration in this way, for both my son and many others over the years. In my experience as a trainer, once the missing information has been identified, and the story shared, in nine times out of ten the unusual response disappears as a direct result of the improved social understanding. However, to just use this approach to target specific difficulties wastes another valuable and important use of Social Stories. It’s best to use them consistently throughout an individual’s life, each story building on the last, and continually developing concepts. Eventually, they create a truly unique description of life delivered in a crafted and meaningful way for that individual. One of the most important things

we can do with Social Stories is validate a young person’s experience from their standpoint, respectfully acknowledging this as valid, and then share another perspective that they cannot see for themselves. Here is an example: eye contact is frequently uncomfortable for our young people, but neurotypicals need to know sometimes when a young person is listening. In the neurotypical world if you are not looking then you are not listening, which is an unfair but common assumption. A neurotypical child innately understands this because he looks at people in order to listen, and it is comfortable for him to do so. This may not be the same for a child on the autism spectrum, and he may not know that someone else has to see him looking at them to know he is listening. I wrote this Social Story (see page 37) to share this missing information and explain to my son what the teacher needed to know, while remaining respectful of the discomfort eye contact caused him.

It was immediately successful. We used this years later for listening to tutors at college, and then eventually for listening to interviewers in a job interview and it has worked every time.

Further help

• Find out more about Social Stories at www.autism.org.uk/socialstories. • The following titles by Dr Siobhan Timmins are available from Jessica Kingsley Publishing: Successful Social Stories for young children with autism, Successful Social Stories for school and college students with autism and Developing resilience in children with autism using Social Stories • Dr Timmins will be giving Social Stories workshops in Birmingham on 30 June and in Bristol on 7 November. Call 0141 285 7117 or email training.enquiries@nas.org.uk to book.

YOUR AUTISM MAGAZINE

A young adult and carer at Kingsley House residential service in Devon

Spotlight on residential services

How can our charity help you? Head of Services, Hannah Barnett, explains what our residential services provide for adults with a diagnosis of autism in locations across the UK.

hat are our residential services and who are they for? Each residential service provides full-time accommodation throughout the year for autistic adults. The care they provide is specialised and is built around the needs of the person to create an individualised care package. Where needed, staff are available 24 hours to provide support. What kind of activities and opportunities do they offer? Each adult is supported by staff and family members to create a plan which reflects their own interests and goals. We’re working towards making people more independent, helping them achieve their own outcomes. These might include vocational and life skills, as well as things like access to college courses, meal preparation or safety in the community. In terms of leisure activities, the plan might include bowling or historical-interest trips, visits to pubs or restaurants, sporting activities, local events and day trips. Each adult is encouraged to try new

things and increase their independence where possible. What makes the services different to others? As autism specialists, we have the knowledge and experience to be able to create structures and plans to support people. We offer specialist training to our staff so they are supported in providing the best experience for people. What I think really brings to light the strength of our specialist services is seeing the individual achievements made by each person we support – and we celebrate every one, however big or small. Speak to any of our staff and yes, they may well tell you it was a long time coming, but they will all have stories to tell about the progress that adults we support have made. Any specific success stories? One autistic adult who we support at his home is passionate about running. He frequently ran out at night time, where he would often get lost and picked up by the police. Rather than trying to stop him from doing

something he clearly enjoyed, the staff wanted to find ways to adapt his support to turn it into a safe and positive pursuit. So, we recruited a support worker who shared the same passion of running – he ran marathons, so we were quite confident he’d be able to keep up! We also located a running club that was accepting of autistic adults. Tailoring important aspects of his support carefully to him meant that he stopped running at night, because he had a purposeful focus and had started to enjoy running during the day with his new group. ●

“Seeing my son run, happy and smiling, back to Overcliffe after each home visit is so very reassuring” —

Parent, Kent

Did you know?

You can make an enquiry about residential services by filling out the form at www.autism.org.uk/services/community/form. Find out about our other services and branches at www.autism.org.uk/services.

YOUR AUTISM MAGAZINE

RESOURCES

Colour coding for learners with autism

Giveaways

AUTHOR: Adele Devine PUBLISHER: Jessica Kingsley Publishing PRICE: £24.99 VERDICT: A useful resource for both new and experienced practitioners. IN THIS BOOK, the author builds on existing literature on visual supports for autistic children. By considering the role of colour in depth, she helps the reader to understand the breadth of ways in which it can contribute to visual supports and therefore the understanding, learning and participation of autistic children. The book is well-suited to practitioners who are newer to the field and will be interesting to parents. However, for the more experienced, there are some useful reminders and pointers. The book also encourages the practitioner to make links with colour themes in the world around us that can support children to generalise their understanding. Refreshingly, the author frequently references the views of autistic people. Further peer-reviewed research may also have been interesting to some. The CD of resources is a useful tool, particularly to those who do not have access to symbol software packages.

Reviewed by Mags Mukasa, Specialist Speech and Language Therapist

To win a copy of The healthy coping colouring book and journal: creating activities to help manage stress, anxiety and other big feelings, email yourautismmag@ nas.org.uk with your name by 8 June quoting ‘colouring’. The winner will be announced in the next issue. The winner of last quarter’s competition to win The guide to good mental health on the autism spectrum is Rona from Glasgow. Congratulations, Rona!

Become a reviewer

Would you like to join our reviewer list for books and products? Email us at YourAutismMag@nas.org.uk.

Our six favourite… headphones

BOSE QUIET COMFORT 25 Great clarity of sound for music, and they cancel out background noise, creating a lovely quiet environment. But they still allow me to hear essential sounds like fire alarms. Recommended by Emily

PSYC WAVE S1 WIRELESS BLUETOOTH HEADPHONES These are a great, cheaper option. They don’t block out all background noise, but the weight of them on my ears is incredibly calming, and they soften environmental noise. Recommended by Erin

BEATS WIRELESS These headphones are comfy and provide added pressure around my head. Wearing them helps limit conversations as people think I’m listening to music – even with nothing playing. Recommended by Rachel

Our six favourite continues onto page 45

YOUR AUTISM MAGAZINE

RESOURCES

The girl who didn’t know The green zone how to be conversation book AUTHOR: Milda Bandzaite

AUTHOR: Joel Shaul

PUBLISHER: www.aiws.lt

PUBLISHER: Jessica Kingsley Publishing

PRICE: £20 hardcover, £5 ebook

PRICE: £14.99

VERDICT: A lot of people on the spectrum will relate to this

VERDICT: Used with the right support, this book has the potential to make lasting, positive impact.

beautiful book. THIS BOOK COMES on paper that agrees with my particular sensory profile – even the front cover feels nice. The book is a story which uses a wide selection of language but a small amount of words, to depict an autistic girl and her purple sidekick’s experiences in the world. Beautifully illustrated, there are not too many words on each page which makes it an easy read. It is very emotive and is really engaging, with its simple yet quite emotionally deep narrative about the girl’s experiences of rejection. It allows the reader to decide upon the ending. I think this is a positive book – it made me think about how society uses labels and descriptions of people, and how this can limit them in some ways. The arts are a really important communication tool for many people on the spectrum, but also for wider society. While books like this will have a small audience, it only takes one person to make a big difference to an individual or many individuals’ lives.

THIS BEAUTIFULLY ILLUSTRATED and clear book uses simple, visual strategies to explain a very complicated subject. Lots of people with autism can find the concept that people don’t share the same interests as them confusing, and this book explains this with clear illustrations and provides plenty of examples to practice with. It also introduces other social skills (such as questions and compliments) and why people might want to use them. The ideas in the book are easily adaptable to different levels of functioning and include excellent worksheets, which can be photocopied to help people practice the skills. Reviewed by Rebecca Gibb, Your Autism Magazine reader

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

Reviewed by Robyn Steward, autism consultant and author

SENNHEISER (PXC 350) These cut out repetitive sounds such as air conditioning. Being full, over-ear headphones also helps them block out more. Since I use them daily, it’s useful, too, that parts that are prone to wear are replaceable. Reviewed by Richard

SONY MDRZX110NA OVERHEAD NOISE CANCELLING HEADPHONES Really reasonably priced. The noise cancellation is good but not amazing. They are good for blocking out fairly constant noise like when you’re on the train. Recommended by Charlie

SONY EX110 EARBUDS These are cheap as chips (£10-15) and surprisingly hardy and durable. Because they’re earbuds, they do break, but a pair usually lasts me about 8-10 months. I feel naked if I leave the house without them! Recommended by Flynn

YOUR AUTISM MAGAZINE

HOLLY’S STORY

Holly on set for the new Too much information film

I’m a… film star Year 7 student Holly stars in our latest film. This spring, she bravely stood up in assembly to show the film and talk about her autism. BY ALICE TODMAN

olly was diagnosed at seven. Like many autistic girls, she is good at mimicking others, and her autism was missed as people thought she was just naughty. She finds some situations overwhelming – particularly when she’s somewhere unfamiliar or feels rushed. When Holly goes shopping or to social gatherings, she often struggles to filter out all the noises, bright lights and crowds. When cashiers ask questions like ‘how are you’ and she doesn’t reply immediately, she’s often asked another question and then starts feeling overwhelmed and can’t respond at all. People can misinterpret her reaction as rudeness. Holly is doing well at school but finds some situations, like changes to lesson plans, overwhelming. Her school uses strategies to help. For example, she wears a band on her wrist, which is green on one side and red on the other. Her teacher knows she’s okay when her band is green but that she’s feeling overwhelmed when it’s on red. She also leaves lessons five minutes early to avoid the rush, and has an allocated seat on the school bus. When the family goes to restaurants, Holly has to choose her seat first. She won’t sit on damaged or dirty chairs. Jo says restaurant staff can become impatient and roll their eyes. She says, “It would be really lovely if those

waiting staff would kindly stand back and wait patiently. The less fuss that is made, the easier the experience is.” People can be judgmental when Holly has a meltdown. Jo says, “I have had people tell me I am a ‘bad parent’ or what they ‘would do’. None of these comments are ever welcome or justified.” When Holly has meltdowns, sometimes a friend, or even just a big hug, can help her to calm down. Our new campaign film in which Holly stars is about the importance of giving autistic people enough time to process information. Jo is hoping the film will help more people to understand and make life a little easier for people like Holly. “We’re all so proud of Holly. Lots of 12-year-olds would be daunted by acting in a big film like this but Holly’s autism means she doesn’t get embarrassed as easily.” Holly talked about being autistic and presented the film in an assembly at school. A video of the assembly has since spread across the internet, helping generate even more understanding around the world. Although there are challenges, Holly is generally a happy person and is known as “Jolly Holly” by many. She sometimes gets really upset when people don’t understand her autism. But she says, “If just one person sees the film and is more understanding to autistic people, I’ll be happy.” ●

• Watch Holly in our new film and see what you can do to support autistic people in your community: www.autism.org.uk/tmi • If you would like to donate towards our work to raise awareness of autism, please visit www.autism.org.uk/donate.

SUMMER 2017