Your Autism Magazine - Winter 2015

Autism YO U R

Bonus content online!

Find out more inside

GRAFFITI ARTIST STIK

www.autism.org.uk

MAGA ZINE VOL 49 – NO 4 • WINTER 2015

Have you heard of sport stacking?

Meet a worldrecord holder!

how having learning difficulties inspires his art

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LOUD HANDS ARE BETTER THAN QUIET HANDS

ALSO IN THIS ISSUE:

YOUR VIEWS ON LANGUAGE AUTISM AND EPILEPSY HOW HORSES HELP ANXIETY

“My life is just

Stimming and why it matters

different” James’ story of late diagnosis

Winter 2015 EDITOR Eleanor Wheeler WRITERS Heidi Aho, Alice Todman and Suzanne Westbury

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NAS 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 Ten Alps Publishing 13th Floor, Portland House Bressenden Place London SW1E 5BH Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@tenalps.com www.tenalps.com

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SUBSCRIPTIONS Only available to NAS members 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 Photograph by Steve Hickey www.stevehickeyphotography.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 2015 Winter Vol 49, No 4 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 NAS. 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 NAS endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that the NAS endorses or supports the groups or individuals running the website, nor does the absence of a website imply that the NAS does not endorse or support the group or individual running the website.

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elcome to Your Autism Magazine!

This issue includes an exclusive interview with Stik, a street artist widely hailed in the media as the new Banksy. Stik isn’t autistic, but understands what being excluded from society feels like, having experienced homelessness as a result of his learning difficulties (page 21). There’s also some great advice for surviving Christmas (page 14).

This season we’ve put together a collection of guidance on managing money – including expert advice and top tips from autistic adults – especially for members. Go to www.autism.org. uk/digitalYAM and log into the members’ area to access the bonus content, which is curated by our autistic editor, Flynn Hagerty.

Don’t forget the AGM is on 21 November. You can register online at www.rsvpbook.com/ NASAGM2015.

Contents 04 News 10 Research in focus 13 Readers to the rescue 14 How do I... get through Christmas?

16 Feature: My story 21 Feature: Graffiti artist Stik 25 Interview: Susan Dunne 28 Feature: Viewpoints on autism language 33 Advice: Stimming 37 Advice: Autism and epilepsy 41 Spotlight on support: Online Community 44 Resources 46 I’m a… Sport stacker!

I hope you have a very happy Christmas!

Eleanor Wheeler EDITOR

Visit our Facebook page www.facebook.com/ YourAutismMagazine

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News

A round-up of the stories that affect you

Autistic adults Sam, Danielle and Kevin testing early campaign ideas

Carers exhibition

New campaign to improve public understanding The National Autistic Society has a proud history of raising public awareness about autism.

Our latest research shows that 99% of the public have heard of autism, a huge change since the NAS started in 1962.

But too many of the public still don’t really understand how autism might affect someone’s behaviour. Over 7,000 autistic people and family members told us earlier this year about how the public’s reactions to them were making their lives far more difficult. Many often felt unable to leave the house because of how other people might react to their behaviour. Others had been asked to leave a public place like a shop, cinema or café because they were behaving ‘strangely’.

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Next year, we’ll be launching a new campaign to change the public’s reactions to people on the autism spectrum. We will be explaining to the public that autistic people often feel overwhelmed by ‘too much information’, whether that is sensory overload, difficulties with language or problems adjusting to new places. We will be asking the public to give people space and understanding rather than being judgemental if someone seems to be having a meltdown or needs more time to process information.

Do you want to help? From sharing your stories on social media or fundraising, to improving public understanding locally – there are lots of options. Email tmi@nas.org.uk to learn more.

Carer’s UK celebrated its 50th anniversary this year with a photography exhibition showcasing the lives of carers.

In ‘This is Caring’, Chris SteelePerkins’ photographs feature members of the charity and the people they support.

Chris said, “I was conscious that caring situations are very rarely depicted.” The exhibition was in the members’ lobby of the Scottish Parliament in August and September. The photographs will be touring the UK for the rest of 2015.

The number of full-time carers in the UK is set to reach nine million by 2037, and Carer’s UK is asking for urgent government investment. Heléna Herklots, chief executive of the charity, described the situation as “a tipping point”. Dawn, one of the parents featured in the exhibition, has two children with complex needs. She said, “I feel this government is doing its best to stop disabled children from accessing the best in care and education.”

Check www.carersuk.org/ thisiscaring. for the latest tour dates.

WINTER 2015 • NEWS

News in brief New purpose-built autism centres open in Surrey schools

Chris and his mum Helen suffered needlessly due to slow diagnosis

NEARLY 12,000 PEOPLE SUPPORT DIAGNOSIS CAMPAIGN In August, the NAS launched its

new campaign to reduce diagnosis waiting times: Autism diagnosis crisis. Recent surveys indicate that people like Chris (pictured) are waiting over two years on average for an autism diagnosis after seeking professional help – meaning it takes too long to get the support they need. Almost 12,000 people signed our letter to the Health Secretary and

Chief Executive of NHS England, calling for national action to reduce waiting times. We know this campaign has had a positive impact on NHS England and the Department of Health and we will be pushing for this impact to turn into action.

For the latest news on the campaign, go to www.autism. org.uk/diagnosiscrisis.

We’re excited to announce that the first two NAS Cullum Centres have opened at Salesian School and Rodborough in Surrey.

The purpose-built autism centres in mainstream schools aim to give students on the autism spectrum the support they need to thrive in a mainstream education setting. Learn more at www.autism.org. uk/cullumcentre.

Advance warning of changes to NAS website In the next few weeks, the design of www. autism.org.uk will be changing. The new look will be simpler, cleaner and easier to navigate.

It will also be much easier to access and read on smartphones and tablets.

HOLIDAY BOOKING OFFER FOR NAS MEMBERS

Sybil Elgar School celebrates 50th birthday

Thinking about next year’s break?

Forest Holidays offer self-catering log cabins at nine UK locations on Forestry Commission land. They’ve received lots of positive reviews from families living with autism and have offered our members a discount for any cabin booking made before 30 November 2015 for a break before 1 January 2017. Find out more at www. forestholidays.co.uk and use the code NAS to get 10% off your booking.*

Last month, we celebrated 50 years since Sybil Elgar School, our first school and the first autism-specific residential school in the world, first opened its doors. The school has been making a difference to the lives of children and young people with autism ever since. For more information about all of our eight schools, visit www.autism.org. uk/schools.

* The code NAS must be applied at time of booking and cannot be used with any other offers. Forest Holidays may amend or remove this offer at any time.

Read expert advice on preparing for Christmas by Vice Principal, Paul, on page 14

Get set for AutismCon 2016

AutismCon, our annual convention run by and for autistic adults returns in March 2016! Expect presentations, workshops, and talks on a range of subjects, including autism. Highlights include a discussion panel on autism and sexuality, a poetry workshop, the chance to grill an MP and more! Learn more at www.autism.org.uk/autismcon.

Lauren Lovejoy performing at last year’s AutismCon YOUR AUTISM MAGAZINE

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NEWS • WINTER 2015

Celebrating at the finish line

INTREPID PARENT AND FRIENDS TEAM COMPLETE CYCLE OF A LIFETIME Four amazing fundraisers cycled from Land’s End to John O’Groats this summer.

Alison, Annie, Chris and Kate met on the NAS London-Amsterdam bike ride last year. Kate has two teenage sons with autism, and the others wanted to support Kate and friends with children on the autism spectrum. The cyclists decided to set their own challenge and formed a team called Friends4AutismUK. The “LEJOG” ride took ten days and covered 960 miles in total. It included 49,049 feet of hill climbing – that’s equal to going up Mount Everest 1.7 times! They collected support and even a few donations en route. Chris said, “What really buoyed us up was the kindness of the people we met. You hear a lot of bad news in the world, but we saw the other side of the coin.” The team is still aiming for their £10,000 target.

You can show your support at www. justgiving.com/Friends4AutismUK.

Boy behind Lego Titanic tells his story Brynjar Karl, 11, made headlines last year when he built a model of the Titanic out of 56,000 Lego bricks. Now he has written a book about his experience to inspire other young people on the autism spectrum.

Brynjar, who lives in Reykjavik, Iceland, took 11 months to build the 6.33 metre-long model. He took great care in gluing the Lego bricks together, spending hours at a time on it after school. When his story went viral he became known as the Lego boy.

In his book, My Autistic X Factor, Brynjar details his journey of overcoming obstacles to complete his dream of building a replica of his favourite ship. The book aims to motivate children

WINTER 2015

of all ages, especially those with autism, to work on what they love and to not let disabilities hinder them from achieving their dreams.

Brynjar’s book is available on Amazon and you can find out more at www.brynjarkarl.com.

PROMOTION FOR CAR ENTHUSIAST CHRIS In East Yorkshire, Chris Coggins, an autistic adult who lives at Goldcrest House in Goole, is celebrating a promotion off the back of the great work he did during his first year of employment. Ralph Parish, Registered Manager at Goldcrest House, told us: “Chris is a massive car enthusiast and he is always the first to wash staff cars so it’s with thanks to the Yorkshire Car Co that Chris can regularly take part in an activity he really loves. Chris works for the car company as part of the Goldcrest House introduction to work scheme, cleaning, waxing and polishing forecourt cars for sale at the showroom, and is now in charge of valeting the showroom fleet. Ralph continues: “He absolutely loves going to work and spending time with the cars. He’s become an integral member of the team and it’s great to see his hard work has been recognized.”

Unplugged for Autism returns to London next month! Autistic singer-songwriter and long-term supporter of the NAS, Ed Goodale, will be launching his new album at this not-to-bemissed, autism-friendly acoustic gig. Join us at the iconic Underworld in Camden, London on 16 December.

For tickets go to www.autism.org.uk/unpluggedforautism.

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Brynjar holding two of the giant funnels for his Lego replica of the famous ship

Ed Goodale at last year’s Unplugged for Autism

WINTER 2015 • NEWS

VOLUNTEER INITIATIVE HELPS AUTISTIC ARTIST SELL WORK

PEGGIE EVERARD – 1923-2015 We are sad to report that Peggie Everard, one of the founder members of The National Autistic Society, has died aged 92.

Peggie, whose son Peter is on the autism spectrum, started as a part-time volunteer. As a qualified social worker she was a sympathetic listener and a source of authoritative information on diagnostic services at a time when other autism advice and support was practically non-existent. After serving on the Committee of The Society for Autistic Children, as it was then, from 1962, Peggie succeeded Helen Allison as General Secretary in 1969, serving until 1973.

Fellow founding parent Michael Baron said, “Always cheerful, and brimming with ideas, Peggie was

York-based artist, Peter Myers, has received some help from a group of volunteers to make his designs available to buy online as prints, cards, notepads and other gifts. Artistic Autistic, which sells Peter’s merchandise, was set up by staff and students from the University of York. All profits go directly to Peter. Visit the shop at www.artisticautistic. co.uk.

Peggie (middle, bottom row) with other NAS founders in 2002 an inspired pioneer, a realistic thinker and at the forefront of our campaigning group.”

After leaving the charity, Peggie edited two books: An Approach to Teaching Autistic Children, published in 1976 and Involuntary Strangers: Autism – The problems faced by parents, published in 1980.

She is survived by her sons Peter and John and will be greatly missed.

DO YOU KNOW ANYONE WHO WORKS IN A SCHOOL? SPREAD THE WORD Next year will see the first ever autism awareness week especially for schools.

We’ll be helping teachers and pupils to learn more about autism and spread understanding by taking part in fun educational and fundraising activities.

Engaging schools will help to equip teachers and young people who may never have heard of autism with the knowledge to accept and empathise with people living with the condition. Find out more at www.autism.org.uk/saaw2016.

Don’t forget you can buy NAS Christmas cards at www.autism. org.uk/christmascards. Why not grab a stocking filler at the same time? Check out our shop here: www.autism.org.uk/waawshop.

AUTISTIC ADULT CHARACTER ON LONDON STAGE IN NEW PLAY

Schools’ Autism Awareness Week will be 14–18 March 2016

© Mark Dauet

Earlier this year, the Park Theatre in London staged the world premiere of new family drama, The Gathered Leaves, which includes a character who is on the autism spectrum. In order to help actor Nick Sampson prepare to play Samuel, autistic writer and trainer Robyn Steward spoke to him and the rest of the cast about what having autism is like. The theatre also hosted a Q&A on autistic characters in drama after one of the performances, in which playwright Andrew Keatley answered questions from the audience alongside Robyn Steward and Director of the NAS Centre for Autism, Carol Povey. Carol said, “It was wonderful to see such a powerful and sensitive portrayal of an older autistic adult within a family setting. This will have undoubtedly contributed towards a greater understanding and awareness of autism.”

The Gathered Leaves 2015 run is now finished but further Nick Sampson (left) playing performances are planned. Keep an eye on the Facebook page for news. Samuel in The Gathered Leaves

YOUR AUTISM MAGAZINE

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Research in focus Bringing you news of the latest research into living and working with autism National study into best model for adult support services A new research project aims to find out how the Government can best support adults with Asperger syndrome and ‘highfunctioning’ autism through local specialist teams.

The research may help to shape services for autistic adults across the country

The Government’s 2010 Autism Strategy and National Institute for

Health and Care Excellence (NICE) recommend that every locality has a ‘Specialist Autism Team’ (SAT). These teams must be community-based, multi-disciplinary, and provide and coordinate services for autistic adults.

Diagnoses of ‘high-functioning’ autism and Asperger syndrome are more common than previously thought; it is estimated that 1 in 200 adults have this diagnosis. Experts believe SATs can help prevent a wide range of difficulties for adults in these groups. However, more data is needed on what makes a good and effective SAT. The project, called Supporting Adults with High-Functioning Autism and Asperger Syndrome (SHAPE), is a major new study which aims to find out how SATs can be most useful to autistic adults. Funded by the National Institute of Health Research, it will take three years to complete.

Researchers from York, Newcastle

and London are involved, and the project is being led by a team based at the Social Policy Research Unit at the University of York. The National Autistic Society is collaborating on this project, leading on user involvement and making sure the findings reach the right people.

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The sort of questions the research aims to answer are: Which professionals need to be in the team?

What is the best way of working with and supporting autistic adults and their families? Do all members of the team have to be based in the same place? How can different agencies work best together?

The project will map SATs that

currently exist in England and categorise them into different types of service models. It will then compare and evaluate different types of SAT in terms of outcomes

(that is, the impact on individuals’ health, well-being, and changes in their lives), experiences (finding out what service users, their families, and professionals think), and cost.

Different groups of people will find

the research findings valuable. These include people who commission health and social care services, professionals working with autistic adults, and – of course – adults themselves. ● For more information, go to bit.ly/shapeHFA.

research • Focus

Survey shows long waiting times for diagnosis Research from Goldsmiths, University of London, and City University London confirms long waiting times for an autism diagnosis.

Central to our new autism diagnosis crisis campaign (see page 5) are the results of two recent surveys, which have explored the diagnostic experiences of over 1,000 parents and over 100 autistic adults.

Led by Dr Laura Crane and Professor Elisabeth Hill, these surveys highlighted that on average, parents wait around three and a half years from when they first contact a health professional until their child receives an autism diagnosis.

Delays are often lengthier for children with Asperger

Autistic adults are still waiting around two years for a diagnosis

syndrome (lasting over four years), probably because the signs of autism are more subtle in children who do not have intellectual impairments and appear to have good language.

It also showed more than half of surveyed parents were dissatisfied with the autism diagnostic process and 84% found the process stressful.

Although there is some indication the situation for autistic adults is improving, there is still around a twoyear wait to access an autism diagnosis.

Dr Crane said, “The issue of autism diagnosis waiting times urgently needs to be addressed, especially because diagnosis is often the key point at which parents and adults are able to access the help and support they need”.

• Find out more about this research at www. autismdiagnosis.info.

• Read the full report of the parent survey at bit.ly/experience-ofdiagnosis-parent and the adult survey at bit. ly/experience-ofdiagnosis-adult.

Better teacher training is crucial in improving support

Dissatisfaction with new SEN system One year on from the start of the new SEN system, parents and young people have told us that their battle to get support has got harder.

Parents believe services have deteriorated over the last three years, and a lack of support has had damaging consequences for their children, including their education and mental health.

Our SEN report 2015: A health check on how well the new SEN system is meeting the needs of children and young people included the views of parents and young people we surveyed, many of whom have dealt with the reformed system. There are high levels of dissatisfaction with the new assessment process for Education, Health and Care plans, including a lack of information, ongoing delays and refusals for support.

Parents and young people also continue to report low levels of autism awareness among teachers. Even if the reforms begin to deliver on their promise of a more joined up, simpler and supportive system, they must be accompanied by better teacher training.

• Read the full report at www.autism.org.uk/ sen-report-2015.

• Teachers and other education professionals can sign up to free emails containing resources and information about autism at www.autism. org.uk/myworld.

Find out more or get involved • Read the autism research in the Autism journal at aut.sagepub.com. NAS members get a 30% subscription discount.

• Could you support vital research work? Visit www.researchautism.net to find out more.

Y OU R A U T I S M M A G A Z I N E

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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

having your autism diagnosis flagged up on your records, so that any receptionist, GP or nurse at the practice will have it called to their attention.

You could also ask to wait in a room away from the main waiting area, and you can ask that reception staff are aware of your need for this accommodation and take you straight through to the room when they see you come in.

— Ametrine

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

© Alamy

0808 800 4104

Asking your GP for reasonable adjustments can help to make appointments less stressful.

When I go to see my GP, they don’t take my autism into account. This makes me really anxious and means I forget to bring up half the things I made the appointment for in the first place. Can anyone help?

— autistic adult List everything you want to say on a piece of paper and either read this out to the doctor or give him/her the list. Ask for a double appointment so that you don’t feel so rushed and stressed.

Take someone with you who knows you well and whom you trust if you think this might ease the

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stress. However I find that the main advantage in doing this is so that you don’t miss or misinterpret what the doctor says to you.

— Jim I’d recommend changing your GP. I eventually found a lovely GP who was sympathetic and understood my autism.

— Cass Contact the practice manager by writing a letter addressed to the Practice Manager, and send it to your GP surgery. Things you might ask for include

Ask your GP practice to consider making some reasonable adaptations now in order to accommodate autistic disabilities. One must also of course ensure that one’s medical notes do in fact record one’s autism diagnosis, as without the appropriate code any reference to one’s condition will effectively either be hidden among many textual entries or the GP may incorrectly consider that the condition was a childhood one and of no relevance to any medical complaint made by an adult.

— Stephen

Help me next!

My son is nearly six and doesn’t sleep very well, sometimes starting the day at 2.30am. He’s had various medicines from the paediatrician, but none have worked and now she says she can’t prescribe anything else. Can anyone help?

— Sheran 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 content to be published. We reserve the right to edit submissions.

How get through do I?

Christmas?

Christmas can take over our lives, with lots of different events, people, rituals, chores and novelties demanding our time and energy. Everyone deals with these things differently, but many people on the autism spectrum find the disruption of routine at Christmas stressful, upsetting and difficult. We asked an expert NAS teacher, who has worked with children with autism for over 19 years, to share his advice on surviving the festive season.

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B Y PA U L K AVA N A G H , D E P U T Y P R I N C I PA L AT N A S S Y B I L E L G A R S C H O O L

hristmas can mean lots of changes, particularly to young people used to the school routine.

But whatever your age, this time of year can be hard and it’s vital to plan ahead. It’s a good idea to create a calendar of the entire period so you make everything which is happening nice and clear in advance, and tick things off once they’re done. Here are some more ways in which being prepared can help to reduce potential stress and anxiety.

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CHRISTMAS SHOPPING

Some people love it, some hate it – but whatever your view, being in a busy supermarket or shopping centre with sensory stimulation on all sides can be very overwhelming.

If you’re autistic or support someone with autism, avoid the worst of it by choosing an unpopular time of the day, such as early morning or late evening. If you’re driving or using the bus, think about what the traffic will be like and avoid rush hour. If you support someone with autism, make them feel included in decision-making around what you buy. Young people especially need to feel involved and part of the occasion, and that they are valued. As a result of the stressful environment, some people might behave in a way which others find inappropriate. If people around you are judgemental, this can cause feelings of insecurity and rejection and it may be helpful to politely explain that you or the person you support has autism.

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GOING TO SPECIAL EVENTS

Christmas time often means trips to shows, meals with family and friends, or other out-of-the-ordinary events. If you’re going to a show or film, think about where you’re seated, and plan ahead so you’ve got an idea of what to expect. Plan your journey carefully, allow plenty of time and be mindful of any significant events that might be happening in the local area which could cause delays to your journey.

Be very mindful of the effect little disruptions may have on you or the person you’re supporting and make sure you have a back-up plan in place in case anything goes wrong. It sounds obvious, but it’s also important to make sure you’re wearing the right clothing for the weather conditions. Around Christmas, you can often go from a very cold environment outside to a very warm one when you go indoors.

This can have an adverse impact on people with sensory difficulties in particular.

SOCIALISING

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Christmas can mean meeting up with family and friends in groups, which can be immensely overpowering for people with autism. Have a quiet area for retreating to when things get too much, to engage in a favourite activity or relaxation technique. Prepare other family members and friends so they understand your or the person you support’s needs in advance, so they don’t lay on unrealistic expectations.

If you support someone with autism, be careful to be discreet and sensitive about how you do this. Be respectful and make sure you actively include them. Advise friends and family to introduce favourite topics or special interests to start a conversation.

Buying presents which relate to but are not absolutely a person’s special interest can help to gently expand an obsession, and may also help with engagement in social situations.

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How do i? • Feature

Giving and receiving gifts

The concept of giving and receiving cards and presents can be hard, especially if you have a personal budget to manage.

How much do you spend? How do you make sure that you’re spending the right amount on everyone? The sense of having got things wrong can be upsetting and lead to feelings of rejection. But you can avoid this by making the rules clear in advance about what to expect to avoid disappointment and nasty surprises. Although many people enjoy surprises at Christmas, the sense of unknown can be very difficult for people on the spectrum and it’s good to be clear where you can. Advise friends and family on the best present ideas to get and then manage expectations accordingly. Make clear guidelines on how much to spend on friends, parents, or carers. This might also include who not to exchange cards or presents with.

Christmas preparations at home

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For people living communally (in a family home, with flatmates or in a residential service for example), changes like trees, lighting, decorations or even when presents will be laid out can mean the home takes on a different meaning. If you’re supporting someone with autism, make sure you plan any environmental changes like this around the person’s needs. They might dislike certain colours, patterns or shapes, for instance.

You could just have one area or room which changes at Christmas, so people can avoid it if they like. As with shopping, having an inclusive approach to choices around decoration helps people feel valued and may mean they are better prepared to accept the changes.

This needs to happen again when things return to normal after Christmas.

Useful resources

Food and meals Christmas can mean different foods, and more treats like chocolate, sweets and biscuits.

For children, you may need to have rules in place which tell them in advance how much is allowed. If you’re visiting friends or family, let them know beforehand about any particular problems with or intolerances to foods which are likely come out for parties or Christmas. Ask them to make small adjustments like keeping things out of sight, substituting them for something else, or simply not expecting you or the person you support to want any! Some children dislike new foods and no one should be forced to eat a traditional festive dinner for the sake of it. If a burger and chips is your child’s favourite, stick to that.

Travelling Preparing in advance for a long journey is crucial. Have a schedule for reference to help the person feel in control. Social stories can also be immensely helpful. Break the journey down and plan in toilet, meal and rest stops if necessary. Have a favourite item such as a picture, toy or quilt to hand and some self-occupancy skills and activities prepared, such as playing on an iPad or listening to music. It’s important to politely let people along the way know how they can help, like asking to board first at the airport. If you use alternative communication, think about what you might need to ask at each stage of the journey in advance, and be prepared.

• Read more tips for Christmas at www.autism.org.uk/christmas.

• Get resources to help with explaining to others about your or the person you support’s autism at www.autism.org.uk/autism-awareness-resources.

• See page 44 for autism-friendly shows this season or go to www.autism.org.uk/af-performances.

Sybil Elgar School

Paul and everyone else at Sybil Elgar School have lots to celebrate this Christmas as it’s the school’s 50th anniversary! Read more on page 5.

Y O UR AUT I S M M A G A Z I N E

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MY STORY • FEATURE

Jan has been fighting James’ corner all his life.

My story

&Jan

James

James (38) was diagnosed with autism when he was 25. His epilepsy meant for many years his autism went unnoticed, and James’ mum, Jan, had to fight to get a referral. They told us about the difference getting a diagnosis has made to James’ life.

J

an: James lives in residential care because his epileptic seizures are so frequent. He’s also diabetic and has various other conditions. For a long time we didn’t know that James had autism; his unusual behaviours were put down to his epilepsy.

He had a very difficult time at primary school. He had to go into hospital for two months because he was having a lot of absent seizures (short lapses of awareness), and they needed to get his medication right.

Then he was put into a ‘physically handicapped’ school, which of course wasn’t right either.

We found an organisation which put us in touch with a specialist school, college and residential care home for people who have epilepsy and other complex needs. He started there at the age of 11, and still lives there now.

We still didn’t know he had autism.

Everything was being put down to the epilepsy, which by that time was pretty rampant.

It was when he was about 18 that people started thinking he had challenging behaviours, because other kids with epilepsy were developing emotionally, whereas he wasn’t.

He couldn’t cope with the frequent changes to his routine and would get in

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such a lather. James is a very bright and articulate guy. People thought because he was very good at certain things he ought to be good at everything, because it was ‘only epilepsy’. But it had become very clear that it couldn’t just be that.

I realised this couldn’t go on, because he was getting very distressed and doing things like banging his head against windows. I didn’t want him to go to the local psychiatrist because I knew he needed a specialist. We’d already found The Lorna Wing Centre and knew that was the right place. I phoned the GP endlessly to press for his referral letter to the psychiatrist.

Then there were more phone calls to the psychiatrist’s secretary to get them to refer him for a diagnosis. The local NHS Trust refused to pay and said he had to go to the local psychiatrist.

I appealed and hassled the Trust by phone, making the argument that he had to see a specialist. Three years on I won!

On the day we arrived at The Lorna Wing Centre, we found it was an ordinary house in an ordinary street. For someone like James, that was wonderful. We weren’t being ‘clinicalised’ again. We all sat around the kitchen table together with a cup of tea and had a chat with the team.

They went through the whole thing,

and at the end of the day they directed everything at him. I remember they said, “James, the reason that sometimes you don’t understand people and people don’t understand you is because you have autism”. They were that clear.

It was quite a painful moment when he turned to me and said, “I’m sorry, Mum”, as though it was his fault.

MAKING SENSE OF THE DIAGNOSIS The diagnosis meant we could go back to the staff at his service and say “You cannot treat him like this”. Once they’d had training about autism, they improved. Things calmed down and the self-harm stopped. The two of us had to talk quite a lot about what the diagnosis meant, and to practise how to tell someone you don’t understand something, or that you don’t like change.

There have been times in James’ life when if he hadn’t had someone in his camp, jumping up and down on his behalf, he would have been locked up. For this reason, I would say it’s so important to have a family advocate who knows you well.

James is less aware now of what he’s missed out on than he used to be. He’s always been so proud of his brother and sister, who both overtook him a long time ago. There could be a lot of

“I love my family and I’m very close to them... I’m proud of where they’ve got to in their lives” — James YOUR AUTISM MAGAZINE

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“I don’t think anyone in the world inspires me like James. Because if most people had the problems he has, they wouldn’t get out of bed.”— Jan

Between the stresses of life, Jan and James have a laugh together bitterness, but there’s nothing but pride, which I find awesome.

I don’t think anyone in the world inspires me like James. Because if most people had the problems he has, they wouldn’t get out of bed. But he does.

James is the person who irritates me the most in life. We have our little set pieces! But also he’s the person I laugh the most with.

When he was first born, I thought the world was his oyster. I thought he could do anything, and there would be nothing I would not move to make sure that happened. And then, the epilepsy. And then, the diabetes. And then, the back, and then the leg. And then the autism. But nevertheless, his spirit is the bit which matters.

In between the seizures and everything else, James can enjoy life – and that’s important.

James: I remember when I first went to school. I was always put at the back of everything. There was one day when I didn’t feel too great and was having seizures, and I had an accident.

The teacher stood me in front of the class and asked me why I wet myself.

It really upset me.

I was bullied as well and called lots of nasty names. One of them was ‘epileptic, brainless twit’. I had just one friend. But when you have lots of bullies and one friend it’s really hard for them to spend time with you.

I understand that – you don’t want to say anything because you’ll get bullied yourself.

I had some problems at the service

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where I live now. One time I had a meeting about finding a new oneto-one/key worker and I was told I couldn’t have my mum with me to support. But I need my mum with me because I find things frustrating. That’s the autism isn’t it? But the person said “No”. It was quite upsetting. I found that really difficult.

GETTING TO GRIPS WITH AUTISM The Lorna Wing Centre really helped because they finally diagnosed me and it was like they knew who I was.

It was a whole day and it was very tiring. They did all these tests, some to do with number sequencing (which I’m brilliant at) and some mathematical stuff (I’m rubbish at maths!)

I didn’t know a lot about autism, though I knew some people with Asperger syndrome at the support service I attend. I didn’t really understand it. I now know more and can explain my autism a little bit.

After I was diagnosed, at first nobody at the service where I live knew about it and they had to get training. At first they seemed to think there was only one type of autism which wound me up a little bit. I got into arguments with people about that. But now they are very good and they know that there is more than one type.

They will still change things around last minute sometimes. When this

Discover more

happens I do get a little bit stressed out and I can lose my rag. I like my bike when I’m in an aggravated mood. It helps me calm down. If I’m stressed out, people know to leave me alone to go on a bike ride, and when I come back I’ll be ready to talk. I think getting a bit of fresh air is a really good method.

I’m the resident DJ at the service where I live. I do parties and discos.

I really like doing the discos because it’s a load of fun and I really love watching people enjoy themselves and to entertain. The other thing I like to do is to go to the choir which my mum leads. We sing some church gospel with a beat, some show songs – whatever we like. We also sign It’s a wonderful world using BSL. I’m a tenor but I can actually sing quite high. But I can’t sing alone though and me and Father Rodney do harmonies together.

We make quite a good team.

I also love doing jewellery, making loom bands, and art. I do ceramics and made a vase for my mum. The only thing I don’t like is getting mess down me and when the clay goes under my fingernails.

I love my family and I’m very close to them. I love my brother and my sister to bits and I’m proud of where they’ve got to in their lives. Jealousy sometimes comes, because they can do all this stuff and I can’t, but my life is just different. ●

• See the vase James made for Jan, and read her poem about what it means to her at www.autism.org.uk/digitalyam.

• The Lorna Wing Centre for Autism provides diagnostic and assessment services, particularly for complex presentations of autism, for both children and adults. It also runs training courses for professionals. Find out more at www.autism.org. uk/lwc or call 020 8466 0098.

• If you have a story to share, email YourAutismMag@nas.org.uk to tell us about it and we may feature you in a future issue.

STIK • FEATURE

Keeping it

Stik with his ‘Art Thief’ piece in Hoxton, London

simple

Stik’s distinctive artworks started appearing on the streets and buildings of London over ten years ago. He now paints murals all over the world and his pieces sell for thousands of pounds. He spoke to us about how his learning difficulties and the exclusion he’s faced as a result influence his art.

I HAVE MILD learning difficulties and I find most information completely inaccessible. This led to me being homeless as I was unable to fill in the most basic forms that I needed to complete in order to get benefits. I found the rigmarole so convoluted and complex that I was unable to engage with it at all.

That’s why I started painting in the streets. I was staying at a homeless shelter in Hackney and wasn’t able

to work as a commercial artist, as I needed to get housed. I took a monthly news column with the local newspaper, the Hackney Citizen, and each month I did a mural that related to the news items I covered. So one month I would cover the cuts to the NHS, the next month I would cover the closure of a public institution.

I would illustrate these pieces on the buildings where the events in the news happened. And that got me into the idea of illustrating politics in a way that I could relate to and that

people could comprehend whilst not being too preachy.

The council very quickly realised that, although I didn’t get their permission for a lot of my murals, I was actually doing their job better than they were and that it was best just to let me get on with it.

I always engaged with people in the community by finding out what buildings were being used for and what was happening there, so I could produce something relevant.

The pieces went on to exist as independent artworks.

I found it easier to go out into the street with a spray can and a bucket of paint, put up ladders and keep a watch out for police, and paint these huge murals in the middle of the night, putting myself at physical risk, teetering on the tops of buildings…

All that was easier than applying for government funding for my artwork.

Now I’m a working artist, a lot of my income goes on getting the sort of support that I needed before to communicate with establishments. I have an accountant who helps

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© Claude Crommelin

BY ELEANOR WHEELER

Feature • stik

Stik’s response to the 2011 London riots first appeared on a garage door and was later sold to an art dealer

“Art is my way of explaining the world to myself, and by extension, helping other people to understand it.”

me with finance, a solicitor who helps me with gallery contracts, and a PA who helps me with machine rental companies. It’s very frustrating but it’s just necessary. If I’d had that help ten years ago, I wouldn’t have had to go through homelessness.

Art is my way of explaining the world to myself, and by extension, helping other people to understand it. The six lines and two dots which I use for each ‘stik’ figure came not only from needing to complete illegal murals quickly to avoid arrest, but they are also a direct result of my own learning difficulties and wanting – craving – simplicity.

The figures are my way of expressing concepts and feelings

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which can’t be articulated – those things beyond words. I try to speak in as few lines as possible and make something perfect and which has the spark of life.

When I plan a painting, I need to be able to hold the whole thing in my mind when I look away. If I can’t, it tells me it’s too complex. So I reduce and reduce until I know exactly where every line is, and what it’s doing. I work on a piece until I find the cohesion and that moment of recognition. The ‘stik’ figure is everything that I want to be: simple, well-boundaried, and bold. These are qualities which I’d really like in myself, but feel I lack.

I get excruciatingly frustrated by

bad layout and design. I feel really angry, isolated and disempowered by bad city planning and a lack of good signposting which means that I find myself in trouble getting from A to B. Though I try not to take it personally.

The ‘stik’ project is my attempt to create things that are easily perceivable and have the beauty of simplicity. I think beauty is in function, even when it’s purely aesthetic. If a teapot doesn’t pour tea without sloshing everywhere, it’s a terrible teapot. Even if it looks amazing it’s a bloody useless teapot and I don’t want it in my kitchen!

As a society, I think we have far too much dependence on words when illustrations would do a lot better. For example, anyone visiting London and using the Tube who doesn’t know the city stands anywhere they like on the escalator. There’s a little sign that says: ‘Please stand on the right’. But nobody reads it and Londoners get irate because people aren’t following the rules. If they replaced the sign with a little drawing of someone standing on the right, people of all backgrounds and languages would understand. It’s really basic.

But it takes effort to make a good illustration.

I used to work with children with autism as a one-to-one inclusion worker. We did a lot of arts and crafts.

I found the children I worked with often had difficulty engaging with the chaos of the different areas of creative play, but were able to focus on an

STIK • FEATURE

Stik carefully refines each figure in his murals to be as simple as possible

“When you’re not generally good at everything, but have one area of brilliance, you want someone else to take care of all the stuff you can’t do, so you can do that one thing you’re good at.” extraordinarily small area of creativity and just be very, very focused. I really identify with that focus – finding something you’re good at, and then doing that, and only that.

When we played basketball, there was one boy who could stand at one point on the pitch and get it into the net again and again. That was his area of brilliance among the complex rules and rigmarole of the game, which he couldn’t otherwise engage with.

We’re encouraged to be general

beings and to be pretty good at everything. But when you’re not generally good at everything, but have one area of brilliance, you want someone else to take care of all the stuff you can’t do, so you can do that one thing you’re good at.

People on the spectrum are extraordinary people who just need a bit of help to give the world their gift.

I don’t think that every autistic person is a savant genius – that’s not what I’m saying and I think that’s quite a

For some of his artworks, Stik takes big physical risks damaging stereotype – but I think with a little bit of help you can gain an extraordinary amount from people.

It has taken me ten years to get to where I am today, and it has taken so long because of my difficulties. If I’d had the right help I think it could have happened a lot sooner. ●

Find out more • Stik’s book, also called Stik, is published by Century Penguin/Random House. We have a copy to give away to one lucky reader. Email yourautismmag@nas.org.uk and tell us what resonates with you most about Stik’s story for your chance to win.

• Want to read more from Stik and see more pictures? Log into the members’ area at www.autism.org.uk/digitalyam.

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SUSAN DUNNE • INTERVIEW

At home with the herd

Spot, a miniature spotted pony, helps Susan deliver the therapy.

Susan Dunne has Asperger syndrome. After struggling through life with undiagnosed autism, she went on to set up an innovative pony therapy project which has featured on regional television and achieved a national award. She tells us about the project and how horses have helped her.

How does autism affect you?

It’s easier to say how it doesn’t! Autism permeates all areas of your life and affects how you see and experience the world. On the surface everything can look alright but getting through the day can be a huge struggle with high levels of anxiety and stress. Looking back, I’d say the main impact has been

in forming and sustaining relationships.

I find human interaction quite stressful and though it has got easier over time I tend to prefer being in my inner world to being out there in the social world.

What helps you cope?

When I was growing up, no one had really heard of Asperger syndrome and

“Because they are less threatening [than people], animals can encourage people with autism to reach out, care and nurture.”

very little was known about autism generally – so it was a case of ‘work it out on your own’. My autism cut me off from my family who didn’t understand it and I can only tolerate a limited amount of human contact. Fortunately I have always had a very rich inner life and have always been drawn towards animals. Animals in general and horses in particular have been a godsend in my life.

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INTERVIEW • SUSAN DUNNE

Being around horses has taught Susan a different perspective.

“Sitting in a field with the horses is always the best time of the day.”

How can animals help with autism?

Not everyone on the spectrum responds well to animals. But for those who do, animals can be profoundly beneficial. Being around animals is stress-free – you don’t have to read and interpret complex social cues, there is no language barrier, they have fairly simple, repetitive routines and most of all they totally accept you for who you are. Many people with autism experience bullying and social exclusion so feeling accepted and appreciated is a wonderful thing. Also, for me it’s quite a sensory thing too – I love to stroke their fur or bury my face in them. Nothing smells quite as good as a horse!

Is there any evidence to support this?

There’s a growing body of scientific research which suggests that animals reduce anxiety in the population generally and in people with autism in particular by reducing cortisol.

Some studies have shown that animals tend to make us more sociable and of course now we have autism therapy dogs which, when properly trained, can be fantastic. Because they are less threatening, animals can encourage people with autism to reach out, care and nurture so they can also promote relationship skills and communication.

It’s fairly early days in research but basically science is confirming what the rest of us have always known – animals are good for you!

What drew you to horses in particular?

I was obsessed as a child but never had any real opportunity to be around them. Many years later following a serious assault, I was persuaded to go riding by a GP. I was smitten from the start. Not only did horses help me

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massively with dealing with posttraumatic stress but they transformed my autistic world too. They taught me to trust and taught me to see the world from a different (horse) perspective.

Riding allowed me to connect up with my body and the outer world and when I went on to get a horse of my own I felt connected back to the natural world around me through living with the seasonal rhythms that a grazing animal experiences. Most of all, when I’m with horses I feel at home and part of the herd – it no longer matters if I’m a bit quirky or don’t want to talk, they just accept me as one of them. Sitting in a field with the horses is always the best time of the day.

What is the pony therapy project and how did it start?

I take miniature spotted ponies into care homes, day centres, hospices

and special schools. It allows people who wouldn’t normally have access to ponies to meet one – the ponies are very gentle and will travel up in lifts to visit people in bedrooms if they are too ill to get out (hence the title of my book!) It came about because I knew just how much horses had done for me in so many ways, not just in the context of autism, and I wanted to pass it on. It was very much a leap in the dark but it works incredibly well. The ponies, Alfie and Spot, do an amazing job – they can really connect with the most cut-off people. I also find that it’s much easier to talk to people if the ponies are there – they become the focus of attention so it’s not that stressful for me. Everybody benefits from having them around. PS In case you’re wondering, the ponies wear special bags to catch any poo if we’re inside! ●

Read more about Susan’s pony therapy project in her book, A Pony in the Bedroom, published by Jessica Kingsley and available at www.autism.org.uk/amazon.

FEATURE • YOUR VIEWS ON AUTISM LANGUAGE

Your views on

?

autism language Which words do people prefer to use to describe people on the autism spectrum? ‘Autistic’?, ‘with autism’?, ‘has autism’? Following the publication of research on the subject this summer, many people took to social media and email to share their opinions. We’ve brought together a selection.

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T

he language we use to describe disability in everyday life embodies and can therefore help to change attitudes in wider society. The type of labels and descriptive terms people use can make the difference between making someone feel included or excluded, empowered or powerless, valued or dismissed.

It’s important to note that the way we describe autism in everyday life is a separate debate to the one about the terminology which professionals use in the diagnosis of autism spectrum conditions.

Call me autistic One point of view is that identity-first language is better. This means using the word ‘autistic’ to describe people.

Laura Jaine embraces the term. She says, “Autism isn’t a disease, it’s a type of person. So I prefer ‘I am autistic’.

The difficulties we face on a daily basis are often due to the fact we are trying to function in a world not designed for us, among people who don’t understand us. We are not broken, we just need support, understanding and acceptance. Autism is a huge part of us and it’s not a bad thing, I am proud to be autistic and to be part of an amazing community.”

Tracy agrees. She says, “Autism is not something which is separate to myself. I cannot take it off or put it on like a coat. It is the essence of who I am.” She also dislikes autism being categorised negatively. “‘On the autistic spectrum’ is such a loose term. I prefer Autistic and Aspie to ASD. Why should it be described as a disorder? There is nothing ‘wrong’ or ‘disordered’ about me. I think differently from the majority but that does not make me disordered.”

Jen also prefers ‘autistic’, noting the strength the word can have in reinforcing difficulties resulting from

“Autism is a huge part of us and it’s not a bad thing, I am proud to be autistic and to be part of an amazing community.” — Laura Jaine

a person’s autism in other peoples’ minds: “I call myself autistic for this reason: if I say ‘autistic’, people seem to understand that it is serious, a disorder, a disability, and a problem for me. Rather than some chic club I want to identify with this week because it is fashionable”. She adds, “This ‘on the spectrum’ business makes it sound much less severe than it really is! You know, just a shade off ‘normal’.

It minimises the difficulties when people say ‘we’re all on the spectrum somewhere’. NO, WE ARE NOT.” Tobias, a parent, thinks the term ‘autistic’ should be made more common: “My autistic son has no problem with the term autistic but has a problem when people see him as disabled and somehow ‘un-normal’…

For me, my son and all the other autics [sic] are the most wonderful people I know.”

Call me a person with autism Another view prefers person-first language, in which the individual is ‘separated’ from the diagnosis linguistically. This is shown in the phrases ‘person with autism’ and ‘person who has autism’.

Anne explains, “I prefer my son being referred to as a ‘child with

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FEATURE • YOUR VIEWS ON AUTISM LANGUAGE

“I agree that everyone has the right to call themselves whatever they like. But the label ‘autism’ is just that: a label describing difficulties” — Angi autism’ or a ‘child on the autism spectrum’. I do not at all like people referring to him as ‘an autistic’. He is a person first and foremost. Autism is only one part (however major) of who he is. Just as I do not like the term ‘special needs student’. The person is a student who has special needs.”

Beth thinks it’s important the person is seen first and foremost: “In my experience, since I was diagnosed, I’m always being told I’m not ‘very autistic’, but my general findings are that a lot of people don’t know what being autistic really is like… We’re not just ‘autistic’ but ‘people with autism’ and sometimes I think the ‘disability’ is seen as bigger than the person within.

I just think it’s more about awareness than it is about the label, since the label is for outside people looking in more than the people inside looking out (if that makes sense).”

Parent, Angi, agrees, saying, “I will always correct people who describe my son as ‘autistic’. He is so much more than his label or his individual difficulties. I agree that everyone has the right to call themselves whatever they like. But the label ‘autism’ is just that: a label describing difficulties.

Surely the person or individual comes before the diagnosis or difficulty.”

It’s more about having the freedom to choose Many of the same people who have a preference for either person-first or identity-first language also feel this debate is less important than having the fundamental freedom to choose what language is used to describe themselves or their loved ones.

Isobel, who wrote to us using a communication device, explains, “I prefer freedom to choose myself and it depends on the situation and the people. I have autism and I am

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autistic. The trouble is neither term describes me. So, I am firstly Isobel, don’t forget that, then either name is okay. I don’t like disorder or condition.

I’m not ill or disordered, I’m different.

I really don’t like the label, but I know a generic word is necessary so I am Isobel and I am proud to have autism.”

Nicole agrees that the right of each person to choose how they are described is vital. She says, “How about ask the individual what they prefer? We are all different. It’s really not that hard.”

The debate is just one, small part of something bigger Another argument is that there are issues around the language used to describe disability which are more important than the specific debate around autism.

Leo says: “Of all the debates around terminology, the debate around person-first versus identity-first is a necessary nuisance. It’s necessary and crucial because language and the way that it’s used has the power to help people (autistic or not) live their lives, or to prevent them from doing so.

“However it’s also a time-consuming nuisance that’s devoured far more hours of discussion than it should when there are more important issues around language. Take using ‘the disabled’ to describe disabled people or ‘sufferer’ being used to describe someone affected by autism without their permission. So the debate’s only

relevant if we ask the questions to move it forward.”

There are bigger things to address, full stop For some, debates about language in general are eclipsed by wider issues and barriers facing people on the autism spectrum. Planet Autism says: “I prefer to be called autistic or Aspie but I am far more bothered by the lack of reasonable adjustments, battle for diagnoses and ignorance towards females with autism than I am the terminology.”

For others, the description of a person should simply be part of the process of acceptance and celebration.

Mum Joanna says, “I don’t really care what they call my son: autistic, ASD, ‘has autism’… It simply introduces the fact that he views this world differently and opens up the dialogue around what a brilliantly unique person he is.” ●

Find out more • Do you have a view on any of the points raised? Share your thoughts at www.facebook.com/YourAutismMagazine.

• Read more about our recent research into how we describe autism at www.autism.org.uk/describingautism.

ADVICE • stimming

Stimming and why it matters As one of the most outwardly noticeable behaviours relating to autism, repetitive behaviour or ‘stimming’ gets a lot of attention, and it’s not always good. Autistic adult, Joey Scanlon, tells us about the important purpose it serves for people on the autism spectrum.

By Joey Scanlon with input from our Autism Helpline

Stimming can help with managing sensory overload

A “ new condition Think aboutcalled the last time you were in social communication pain, did you engage in any behaviours disorder has been added.

to soothe it, such as taking a painkiller for a headache? It’s the same for stress.

Everyone has their own way of coping.”

S

timming is short for ‘self-stimulating’ behaviours, sometimes called ‘stereotypies’. It’s the colloquial term for repetitive movements that autistic people engage in either to soothe or stimulate themselves.

Repetitive behaviours or ‘stims’ may include arm or hand-flapping, fingerflicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. You may also see the repetitive use of an object, such as flicking a rubber band or twirling a piece of string, or repetitive activities involving the senses (such as repeatedly feeling a particular texture).

How stimming can help To non-autistic people, these movements appear to have no functional purpose and can be quite jarring to witness. Many are embarrassed to be seen in public with someone who is stimming and find it inappropriate or irritating. Yet, while it can be helpful at times to let people on the autism spectrum know if we are doing something socially inappropriate, stimming serves a much greater purpose than it may appear to outwardly.

Stimming could be an attempt to gain sensory input. For example, rocking may be a way to stimulate

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ADVICE • STIMMING

We all have ways of reacting to and coping with stress

the balance (vestibular) system, and hand-flapping may provide visual stimulation. Stimming can also be an attempt to reduce sensory input from a loud, distressing environment by focusing on one sense. It might also be a person’s way of dealing with stress and anxiety and a means of blocking out uncertainty. Some people may revert to old, repetitive behaviours such as hand-flapping or rocking if they are anxious or stressed.

Finally, stimming may simply be a source of enjoyment and occupation.

A useful analogy Imagine your sensory systems as individual dials; you have one for hearing, one for smell, one for your vestibular system and so on. They’re all pointing to a middle point: the optimum level. For a lot of people on the autism spectrum, these dials are in chaos. Hearing might be cranked up three times too high and touch could be numbingly low. In certain situations, these tumultuous sensory dials create great anxiety, stress and even pain. A smell dial turned up high in the perfume section of Boots, for example, is a highly unpleasant experience.

Controlling our dials Stimming is one way in which we can knock our dials a bit closer to the optimum level. The child rocking in the classroom who’s told to sit still may be doing so to gain some degree

of sensory feedback, so she can concentrate on her lesson and the man humming repetitively in a busy queue may be preventing himself from being overwhelmed by noise, light, smells and the feeling of people brushing past him. So while it may look odd to those with optimum dials, stimming for us is an almost automatic response to how our senses function.

Think about the last time you were in pain, did you engage in any behaviours to soothe it, such as taking a painkiller for a headache? It’s the same for stress.

Everyone has their own way of coping – whether that’s taking a bath, having a glass of wine, or going for a run. Stimming can serve much the same purpose, and asking someone to stop would feel to them how you would feel if we asked you to put down the aspirin and deal with the discomfort of a headache without help.

While a small degree of stimming can be self-injurious, usually it’s not harmful to anyone and in fact, begging us to stop stimming can be detrimental to our functioning. ‘Loud hands’ are better than ‘quiet hands’.●

“While it can be helpful at times to let people on the autism spectrum know if they are doing something socially inappropriate, stimming serves a much greater purpose than it may appear to outwardly.”

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Read more Read more about repetitive behaviour at www.autism.org.uk/ repetitive-behaviour Want to help change public perceptions of autistic behaviour?

Get involved in our big campaign next year.

Read more on page 4.

ADVICE • EPILEPSY AND AUTISM

Epilepsy and autism Epilepsy is a common, serious neurological condition in which there is a tendency to have recurrent seizures. In the UK, one in every 103 people has epilepsy and 87 people are diagnosed with it every day. We asked a specialist neurologist and a support worker with many years’ experience of working with children with autism to share their wisdom on the relationship between the two conditions.

B Y D R R O B E RT O T U C H M A N A N D A N G E L A B A R K E R

W

hat is epilepsy?

Epilepsy is due to an imbalance in brain chemistry, which means that the messages that travel between nerve cells or neurons become scrambled. Because of this, the activity of neurons is disturbed and results in a seizure or loss of consciousness. Many types of seizure can occur and epilepsy can affect anyone at any age.

Is there a link between autism and epilepsy?

The relationship of autism to epilepsy has been an area of scientific interest for decades. The first studies on the subject in the 1960s helped to show that autism is a condition of the brain. We now know that people who are on the autism spectrum are more likely to develop epilepsy than those who aren’t. We also know that people with epilepsy are more likely to be on the autism spectrum than those without epilepsy.

EEG tests help specialists discover the cause of seizures

Does epilepsy cause autism?

There is no evidence that seizures or epilepsy (that is, recurrent seizures) cause autism.

Several research studies have shown that the relationship between autism and epilepsy is not one of cause and effect. It’s true that children who are diagnosed with epilepsy first (for example, those under the age of one) are more likely to be diagnosed with autism later on. However, most of these children have genetic syndromes or other neurological disorders that account for both the epilepsy and the autism.

Who is most at risk of developing epilepsy?

Different studies have shown that intellectual disability (ID) is the major risk factor for people with autism developing epilepsy. The risk for epilepsy in children with autism without an ID is 8%, increasing to 20% in those with an ID. The risk can be as high as 40% in those with

severe intellectual disability.

Among children with autism who have IQs above 70, approximately 4% develop epilepsy. As children with autism reach the teenage years, the risk of developing seizures increases, and continues to increase into young adulthood.

Other factors such as gender, regression of language and social function don’t increase the likelihood of a child who is on the spectrum developing epilepsy.

How does diagnosis work?

The way that a neurologist (or paediatrician) diagnoses seizures or epilepsy is the same whether or not the person is on the spectrum.

However, there are some behaviours associated with autism which can be confused with signs of seizures, such as staring, or repetitive movements. If a person with autism stares without responding or

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Advice • EPILEPSY AND AUTISM

does short, rhythmic movements which are unusual, it could be worth seeing a specialist to check whether they are having seizures. Even a slight concern should always be checked out.

Before making a diagnosis of epilepsy, a neurologist will find out the cause of the seizures by doing some tests. This will often include using an electroencephalogram (EEG) with sleep, an MRI, and in some situations, genetic testing. For more information about diagnosis, go to www.epilepsy.org.uk/ info/diagnosis.

Supporting people with autism and epilepsy with seizures Many of the aspects of supporting people with autism and epilepsy are similar to supporting someone who has epilepsy but isn’t on the spectrum. For example, first aid for seizures (www.epilepsy.org.uk/ info/firstaid). However, having autism can make it harder to explain individual experience and sensations to others – which can mean it’s harder to get the right help at the right time.

For example, a person with epilepsy may have odd sensations before a seizure happens, such as a strange taste in the mouth or blurred vision. Often these signs may not be obvious from the outside, and if a person has autism they may have difficulty communicating what they are experiencing. There is also a risk the signs of an imminent seizure might be misinterpreted as sensory issues relating to someone’s autism and not their epilepsy. It’s therefore especially important to be alert to any small changes in behaviour which might mean something’s not quite right. This might be fidgeting, picking fingers, slapping lips, or becoming unusually clingy. Getting to know the individual is key to understanding their particular triggers and signs.

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There is currently no evidence that seizures or epilepsy cause autism

“Having autism can make it harder to explain individual experience and sensations to others – which can mean it’s harder to get the right help.”

Helping with communication Some children or adults on the spectrum will be able to tell you about the feelings they are experiencing, but for those who use alternative communication it’s important to have a methodology in place that they are comfortable using to tell you how they are feeling. For example, symbols or

pictograms of the body can be helpful when trying to work out what hurts or feels strange. Social stories (www.autism.org.uk/ socialstories) may be helpful, or having a particular sign or symbol in PECs or Makaton to indicate something hurts or doesn’t feel right (www.autism.org.uk/ visualsupports).

EPILEPSY AND AUTISM • ADVICE

An EEG test measures and records the electrical activity of the brain

Keeping everyone informed Sharing information about how a person’s epilepsy affects them with key people across the different settings in their life (at home, school, work or in services they use), is vital and should be done as a matter of course. This includes general information about their epilepsy, such as the normal length of their seizures and recovery, as well as specific information such as how best to communicate with them about triggers.

It’s important that people with autism and epilepsy aren’t made to feel different because they have epilepsy, and that they are included in everything they are able and want to take part in. ●

Useful websites and resources • Log into the members’ area to read more an exclusive, in-depth article about autism and epilepsy by Dr Tuchman: www.autism.org.uk/digitalyam.

Research Autism has further information at researchautism.net/autismissues/medical-issues/epilepsy-and-autism.

• Find out more about epilepsy in general from the Epilepsy Society (www. epilepsysociety.org.uk) or Epilepsy Action UK (www.epilepsy.org.uk).

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Our online Community is a place to share worries and advice anonymously

Spotlight on our online Community

How the NAS can help you Our online Community is a safe space where people living with autism can discuss issues, concerns and get peer-to-peer advice and support. Our Digital Services Team explains more about how the service works and how it could help you.

W

hat is the online Community?

The Community is a safe, online space where people can talk about autism, share their experiences, questions and thoughts. It works because the discussion is between the members themselves. When you make a post you can be pretty sure there will be several people who will have experienced something like you.

So it’s support from others with direct experience which people find hugely valuable.

Who can use it?

You can read all the discussions without becoming a member.

This is how many people start and then later join in when they feel comfortable. Membership is open to anyone over 16 who has a connection to or is interested in autism. Some people drop in for a few weeks and others have contributed since we started five years ago.

What kind of problems do people post about most often?

It’s not all problems (people have a laugh too) and we’re not sure there is most-asked question. Right now someone is asking why their son won’t wash or use deodorant; someone is talking about losing their job through discrimination and someone is discussing their love of cupcake baking. We never know what will pop up next!

“I have often been moved by the honesty and courage of community members.” — Bob, Digital Services Manager

Do I have to say who I am?

No, the Community is anonymous and we don’t currently allow private messaging. We have decided to keep it this way because it allows members freedom to express difficult thoughts and emotions or describe situations very candidly. Unlike Facebook no one has to keep up appearances!

What if someone is abusive?

We have clear rules around what and what is not acceptable. Members can report anything they think breaches the rules. We have a wonderful team of volunteer moderators (some of whom are on the spectrum) that read posts and act on any reports from members.

What’s the most interesting thing about managing a Community?

Everyone who has worked with the Community says that it gives them a unique and unmediated view into the experiences and concerns of the people the NAS was set up to support. I have often been moved by the honesty and courage of members.

Did you know?

This service is funded by charitable donations. If you’re interested in fundraising for us or want to make a donation, visit www.autism.org.uk/getinvolved for more information.

YOUR AUTISM MAGAZINE

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RESOURCES

Guerilla Aspies: A neurotypical society infiltration manual AUTHOR: Paul Wady PUBLISHER: Free Autistic Press through Dark Windows Press PRICE: £7.63 (Kindle edition) VERDICT: A must-read for those who are on the spectrum.

IN A CAPTIVATING, engaging read, Paul Wady, a man who has been recently diagnosed with autism, describes his own distinct experiences and journey through life’s erratic engagements.

Paul delivers both a unique and supportive personal insight into the world of autism, and provides others who are on the spectrum both valuable practical support and advice on how to handle stressful situations that may be faced in our lifetime. A light-hearted and conventional piece, Paul provides various meaningful instructions and life strategies for others who are also on the autism spectrum regarding societal surroundings involving relationships, conversations, friends and family and more. A must-read for those who are on the spectrum.

Giveaway The winner of the Hulton Crafts craft kit giveaway in the autumn issue is Kabie from Inverness.

Congratulations, Kabie!

To win a set of six Tony the Turtle children’s books, email yourautismmag@nas. org.uk with your name by 4 December 2015.

The winner will be announced in the next issue.

Reviewed by Thomas Hewitt, journalist who has Asperger syndrome.

To order books recommended by the NAS, go to www.autism.org.uk/amazon.

Our six favourite… Relaxed performances of pantomimes

1

SLEEPING BEAUTY, WOKING NEW VICTORIA THEATRE, THURSDAY 7 JANUARY 6PM Anita Dobson stars as the Wicked Fairy in this twist on the classic story. Also in the cast is CBeebies’ Ben Faulks (aka Mr Bloom) as Prince Charming and Alan Committie as Chester the Jester.

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2

ALADDIN, SUNDERLAND SUNDERLAND EMPIRE, THURSDAY 17 DECEMBER 1:30PM In this take on the mystical story of magic lamps and carpets, Coronation Street’s Terence Maynard (Tony Stewart) plays Abanazar, alongside other celebrity cast-members.

3

JACK AND THE BEANSTALK, YORK, GRAND OPERA HOUSE, MONDAY 28 DEC 2PM With another starspangled cast, including Stuart Wade from Emmerdale and X-Factor’s Jade Ellis, this panto shows what can happen when you take an old cow to market and sell her for five beans.

RESOURCES

TIPS: Raising a Child with Limited Verbal Skills

Sexuality and Safety with Tom and Ellie series

AUTHORS: Megan Ahlers and Colleen Hannigan Zillich

AUTHOR: Kate E. Reynolds, illustrated by Jonathon Powell

PUBLISHER: Autism Asperger Publishing Co

PUBLISHER: Jessica Kingsley Publishers

PRICE: £17.50

PRICE: £8.99 per book (series contains six books)

VERDICT: Thoroughly recommended!

VERDICT: Fantastic.

THIS BOOK is an absolute must for anyone living and/or working with a child with an autism spectrum disorder!

It answers every question that has ever been asked, including those embarrassing questions no one wants to ask. There are lots of practical and uncomplicated strategies described which support all aspects of a child’s development so it is not just related to language and communication skills.

Tips for managing behaviour, developing play and social skills and supporting sensory differences are all described in an easy-to-read format. There are also very helpful tips included relating to useful websites, supporting behaviour in the community and an abundance of ideas regarding the use and implementation of visual supports across a wide range of social settings.This is not only an informative and helpful book with regards to “what can I do”? or “where do I start”? It also provides a clear rationale of why and how the implementation of practical strategies and supports can make a difference to developing a child’s functional communication, independence and life skills.

Reviewed by Joanne Neill, Principal Speech and Language Therapist

THREE OF the titles in this wonderful set of books have been developed for girls and young women on the spectrum, while the rest are for boys and young men, to help them better understand the changes that occur during puberty, their own sexuality and how to stay safe while using public toilets. The importance of public and private space is highlighted as well as menstruation and masturbation. Each book is written in a clear and positive style which is paired with engaging yet anatomically correct illustrations.

Arguably the most useful aspect of these books is their unambiguous style, they really do tell it as it is and this makes them a perfect tool to facilitate open discussion about topics which many parents and carers find difficult. I would recommended this series to anyone wanting to encourage open discussion on topics surrounding sexuality with young adolescents with autism.

Review by Lizzie Mason, Senior Behaviour Coordinator, NAS Surrey Services

4

SNOW WHITE, BRISTOL HIPPODROME THEATRE, TUESDAY 29 DEC 2PM In this story of handsome princes, poison apples and wicked stepmothers, you can see TV and film star Warwick Davis take on the role of the head dwarf.

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CINDERELLA, MANCHESTER OPERA HOUSE, WEDNESDAY 30 DECEMBER 1PM World-famous sports stars Torville and Dean play the fairy godparents in this magical tale, which also includes a real Shetland pony, songs and ice-skating routines.

6

SNOW WHITE, GLASGOW KING’S THEATRE, FRIDAY 8 JANUARY 11AM This sassy, up-beat production of Snow White sees Scottish comedy legend Gregor Fisher (Rab C. Nesbitt) join Des Clarke (Capital FM) and other celebrities in a star-studded cast.

Find more shows near you at www.autism.org.uk/af-performances.

YOUR AUTISM MAGAZINE

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JAMES ACRAMAN

James loves competitions, and last year he also appeared on Blue Peter to demonstrate his talent

I’m a…

Sport stacker!

Sport stacking involves speedstacking cups in memorised sequences.

James Acraman is world-class in this sport and a UK champion who has represented his country around the world.

BY ALICE TODMAN

J

AMES, NOW 18, was diagnosed with autism at the age of four.

His parents’ health visitor noticed that he was not hitting certain developmental milestones. He says, “I was diagnosed with atypical autism because although I fit a number of autistic traits, I do have good social skills.” James’ main challenge is auditory retention, and he says that many people talk too fast for him to process what they are saying.

James’ friend Philip introduced him to sport stacking after noticing that his hand-eye coordination needed to improve in badminton.

“He got me to do lots of things to help me, one of which was sport stacking.” Although it was a slow start, James says, “Over time I improved each time and ended up dropping the badminton and continuing with the sport stacking!”

Now, James has 15 World Championship medals to his name. He says, “I live for sport stacking sessions and competitions!” The sport is growing in the UK, and in February this year he walked away from the UK Championships with four gold medals and two silver. James is a member of the reigning champion British 3-6-3 relay team. He is even in the Guinness Book of World Records 2016 edition!

He lives in Stevenage in Hertfordshire with his

parents and his sister Rebecca, but his abilities have taken him around the world. James has travelled to Germany, America, South Korea and Canada to represent the UK. James says, “I meet new people from all over the world who are just as excited about entering tournaments as I am”. His skills have featured on ITV Anglia News, Blue Peter and The Disney Channel.

The talented teenager says that he would recommend sport stacking as a hobby. “It’s a great sport – in the World Championships we have males and females competing from the ages of 6-60 years old, so I have a few more years ahead of me yet!” James says the sport is a good workout without being as tiring as something like cross country. It can be played both indoors and outdoors (depending on the weather). Although he really enjoys it, the sport takes a lot of practice and commitment. James says, “It starts off easy with the 3-3-3 routine then gets a bit harder with the 3-6-3 and quite difficult for beginners with the Cycle!”

When James thinks about the future, he says, “I still want to continue sport stacking for many years yet and also get more involved with film making at the same time, which is my other great passion.” His advice to other young people on the autism spectrum is, “Always keep planning and working at what you want to be doing in the future – never give up!” ●

• Watch James’ appearance on on ITV News last year at bit.ly/sport-stacker-james.

• If you have autism or know someone with autism who is doing something

amazing, we’d love to hear about it. Email YourAutismMag@nas.org.uk.

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