Your Autism Magazine - Winter 2014 by The National Autistic Society

WINNER OF THE 2014 MEMCOM AWARD FOR BEST CHARITY MAGAZINE

Autism YO U R

GETTING OUT AND ABOUT What makes an event autism-friendly?

“An explosive chemistry” How Shakespeare can help young people with communication

MUSIC IS MY THERAPY Three musicians on the power of music for people with autism

www.autism.org.uk

MAGA ZINE VOL 48 – NO 4 • WINTER 2014

From fear and flight to five children Karen’s remarkable story

ALSO IN THIS ISSUE:

STAYING SAFE ONLINE WE’RE ICE HOCKEY PLAYERS! HOW TO APPROACH SEX EDUCATION

Winter 2014 EDITOR Eleanor Wheeler WRITERS Heidi Aho, Flynn Hagerty and Suzanne Westbury

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 One New Oxford Street London WC1A 1NU 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 supportercare@nas.org.uk DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Eclipse Colour Tel: 01536 483401 F RO N T C OV E R © Maria Jane Knight www.facebook.com/ PhotographyMariaJane 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 2014 Winter Vol 48, 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.

elcome to the winter edition of Your Autism Magazine. In this issue, we explore how music and drama can help to improve quality of life for people with autism. Three musicians share their different experiences (page 21) and a renowned actress and director tells us about her unique theatre work with children and young people on the spectrum (page 28). We also hear from some amazing people who are playing ice hockey (page 46), and from a motherof-five with autism who has overcome incredible difficulties (page 16). This quarter, we have put together a special supplement on mental health and autism, which includes advice, real stories and articles on this pressing issue. Please email yourautismmag@nas. org.uk if you’d like to share your feedback or ideas. I hope you enjoy reading both magazines, and have a wonderful Christmas.

Contents 04 News 10 Research in focus 12 Readers to the rescue 14 How do I... approach sex education? 16 Feature: My story 21 Feature: Music and autism 25 Feature: Autismfriendly events 28 Interview: Kelly Hunter 33 Advice: Benefit appeals 37 Advice: Staying safe online 41 Spotlight on support: Community care service 44 Resources 46 We’re...ice hockey players!

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 Independent parliamentary inquiry says action needed to improve access to childcare for disabled children

Successes for Careless campaign Our Careless campaign has secured some key commitments from the Government relating to the new rules for determining who is eligible for adult social care. The promised changes will take in to account the basic needs of the most vulnerable people with autism. Over 10,000 supporters took action, calling for the new rules to better protect vulnerable people with autism from abuse, neglect and loneliness. The draft rules for the new care system introduced by the Care Act were published for consultation in June. They failed to adequately

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recognise the basic needs of many adults with autism; needs such as staying safe, building relationships or being verbally prompted to carry out tasks. In response to Careless, the Government have said they will address each of these concerns in the version of the Care Act regulations and guidance published for approval by Parliament. At the time of writing, these had yet to be published but should be publicly available from late October. The new rules will come into force in April 2015. For more information visit www.autism.org.uk/careless.

The Government needs to develop a plan of action and a funded programme to ensure that all families have access to affordable, accessible childcare, according to a new report from an independent parliamentary inquiry. The report also states, “Ahead of the next general election, all political parties must commit to tackling the lack of affordable and quality childcare for disabled children.” Hannah Postgate, whose daughter Rosy has autism and complex learning difficulties, said “Finding high quality, affordable childcare can be a challenge, and for those whose children have disabilities it is sometimes an insurmountable one.” According to the charity, Contact a Family, 39% of families with disabled children don’t use childcare because it is too expensive, and a further 33% feel that there is a lack of staff with adequate experience in their local area.

Hannah and Rosy gave evidence at the inquiry

WINTER 2014 • NEWS

News in brief Tickets for AutismCon on sale On 17 January, come along to a unique and unconventional convention, organised by and for people with autism and their friends and families. Expect workshops, performances, discussion panels and even a fashion show! The event will take place at Conway Hall, London. For tickets (which are £12.50 for unwaged and £20 for waged guests), visit bit.ly/1wj0tz1.

Conor (left), Nicholas (middle) and Edward

THREE YOUNG MEN WITH AUTISM TAKE ON A BIG CHALLENGE Three young men from Chatsworth

Care’s residential homes in Sutton, Surrey, are in the process of completing their Duke of Edinburgh Bronze Award. Conor McCarthy, Edward Carmody and Nicholas Street – aged 25, 24 and 23 respectively – all have a diagnosis of autism, learning disabilities with associated challenging behaviours and are non-verbal. Parents and staff are helping the young men towards their remarkable achievement with careful planning, creating PECS/ Makaton symbol maps, doing practice walks to teach the boys how to use them, fitness training, and assisting with their volunteering and new skills development. Conor (left) does not participate

in group sports and the scheme is giving him opportunities to exercise and enjoy the great outdoors in a structured way. For Edward (right), the award is helping him grow his independence and make new friends. The training for the physical element is greatly improving his fitness and enjoyment of exercise. Nicholas’ mum feels his participation is testament to his ability and proves he is capable of much more. Throughout their lives, each of the young men has faced many challenges. Preparing for the award is presenting challenges of a different nature but the adults supporting the boys feel it has helped to build their confidence and empower them in new ways.

Nathan Scott, who featured in ‘Working it out’ in the autumn edition of Your Autism Magazine has secured a full-time job at Whitefield School in Waltham Forest. In his new role, which he started this September, Nathan has been working on a data collection and collation project. Well done Nathan!

JOB SUCCESS FOR YOUNG NATHAN

AGM and celebration of the life and work of Lorna Wing This year, our charity’s Annual General Meeting (AGM) and family day will be held on 22 November at the Royal Air Force Museum in London. You’ll get to explore the exhibits, meet other members, attend a council meeting and celebrate the life and work of the late Dr Lorna Wing OBE. Find out more at www.autism.org.uk/ AGM2014.To register, please fill out the form at www.rsvpbook.com/AGM2014 by 17 November.

Christmas carols in Fleet Street Join us on Wednesday 10 December for a festive evening of Christmas carols. We’re delighted to be joined again by the fantastic EC4 Music Choir. Taking place at the beautiful St Clement Danes Church in London, you’ll also be treated to readings from special celebrity guests. Tickets start at £10. To book, visit www.autism.org.uk/ec4.

Congratulations to Rosie Barnes, whose Kickstarter project to fund a photography book about her son has exceeded its target. The product of 15 years’ work, Understanding Stanley aims to help people to understand autism through imagery. Watch an interview with Rosie or preorder the book at kck.st/1xK0WLj. YOUR AUTISM MAGAZINE

NEWS • WINTER 2014

Graham received a certificate to mark his achievement

DEL MONTE EMPLOYEE WITH AUTISM CELEBRATES 25 YEARS OF SERVICE This year, Graham Holbourne, 51, who has autism, celebrated his 25th anniversary as an employee of food manufacturer, Del Monte, in Staines. During that time, he has only ever had one day off. Graham started working for Del Monte following a drive for local companies to employ more adults with learning disabilities in July 1989. Sarah, Graham’s sister, said, “Working suited Graham as he likes routine. He gets up at the same time every day, walks to work and does the same list of office duties, such as maintaining the drinks machine and collecting the recycling.” Graham has been supported at work for many years by a colleague, Steve Dyer, and lives independently with some support from specialist provider, Dimensions. Sarah is very proud of her brother. She said, “I think as an employee he is a dream. He is reliable, caring and calm. He is organised and methodical. I am delighted at the prospect of my brother inspiring other people with his incredible journey”.

New initiative to help people with autism enjoy sport Active for autism is a new project designed to support people with autism in sport or physical activity by providing training for sports practitioners. The National Autistic Society worked closely with people on the autism spectrum to develop training materials that will aim to increase the confidence and skills of sports practitioners, the levels of

participation of people with autism in sport, and the self-esteem and well-being of people with autism through taking part in sport. The initiative focuses on delivering sport for people with autism that is inclusive, allows people with autism to make informed choices about their physical activity, sustains their involvement over time, improves their enjoyment of sport and provides a sense of achievement in their physical abilities. The project is supported by The Peter Harrison Foundation, Sylvia Adams Trust, HiT Entertainment, and The Weinstock Fund. Book an Active for autism training course at www.autism. org.uk/active.

APP FOR ACCESSING THE ARTS PROVES POPULAR WITH USERS

The app helps children with autism prepare for going to an event

Circus Starr’s Show and Tell app, a visual story app for children with autism, is proving a hit with users. The app enables children to gain prior understanding of an arts event to increase their engagement and enjoyment on the big day. It’s been available as a free download since September. “The app is generating excitement among teachers because they can see how it can be easily adapted for other uses,” says Cath Logan, Community Engagement Manager for Circus Starr. “Many teachers could see its potential for use across the curriculum and for better engagement with extra-curricular activities, too.” The response from the autism community has also been positive. “This app will be a major breakthrough in supporting families prior to, during and after an event,” says autism specialist Dr Linda Buchan. Debby Elley, co-editor of AuKids Magazine, said the app “gives children a virtual experience… so they have a good idea of what to expect before they go.” To download the app, visit the iTunes store or www.circus-starr.org.uk.

This August, almost 70 cyclists took to their bikes for our inaugural Ride for autism event. The 91.6 mile route from Cambridge to Southwold was incredibly popular with riders. Thank you to everyone who took part and made the ride such a special day. Visit www.autism.org.uk/padstow2015 to find out about next year’s challenge from London to Padstow.

WINTER 2014

WINTER 2014 • NEWS

NATIONAL GOLFING TRIUMPH FOR SPORTSMAN ON THE SPECTRUM This summer, 20-year-old Joseph Vanaman, who has Asperger syndrome, won the British Disabled Open Golf Championship held at Ufford Park in Suffolk. Joseph’s love of golf began at the age of three. As he got older, his hand-eye coordination skills, his liking for the repetitive rhythm, structure and rules of the game and the non-contact aspect meant golf was an ideal fit for him. Two years ago, Joseph won a golfing scholarship to study at the University of Massachusetts in the USA. With the help of the disabilities support team and the golf coach there, he has made it

Joseph’s passion for golf started at an early age to the highest level whilst also studying electrical engineering. Joseph’s father, John, said, “This proves that anything is possible given the right help and support.” Congratulations, Joseph!

Would you like the chance to win £2,500 cash? Our Christmas Raffle aims to raise thousands of pounds for services like our Helpline, which is funded entirely by charitable donations. Tickets cost £1 each. Play online at www.raffleentry.org.uk/nas, or call 0845 601 6936 to order tickets.*

LIVE CAPTIONING-TECHNOLOGY TO HELP SCHOOL CHILDREN This September saw the launch of new technology in autismspecific schools across the UK to help teachers review and assess classroom performance. Originally developed in Australia to support people with deafness, the technology known as ‘Ai-Live’ uses live captioning to support understanding and learning. The development of the support for children with autism is funded by the innovation foundation, Nesta. Eileen Hopkins, Executive Director at Ai-Media, who developed the technology,

said: “Children with autism face considerable barriers to accessing education. The technology helps them by removing metaphor and figurative language and breaking down a teacher’s instruction into simple steps. It also allows teachers to analyse and improve their classroom performance.” Jacqui Ashton Smith, Principal of NAS Helen Allison school, said, “We are really excited about the possibilities offered by captioning for students with an ASD”. Find out more about the technology at ai-live.com.

T’WAS THE MONTH BEFORE CHRISTMAS... Our 2014 Christmas card catalogue is out now and packed with exciting new designs (and stocking filler ideas) to help you prepare for the festivities ahead. Who could resist ‘Reindeer with a cold nose’ (top) designed by eight-year-old Patrick Craig, winner of the child category of our 2014 ‘design a Christmas card’ competition? Find more cards online at www.autism.org.uk/christmascards. A NOTE on Autistic Christmas Cards: In the last issue, we said that Betty Dobson founded and ran Autistic Christmas Cards. We’re incredibly grateful for Betty’s work to support the scheme. However, it was Mie Baron who founded the scheme originally, two years before Betty took over.

ANNIVERSARY CELEBRATIONS FOR NAS SCHOOL AND ADULT SERVICE Somerset Court, the first ever specialist centre to open in the UK for adults with autism, celebrated its 40th anniversary this autumn. The celebrations included a fancy dress competition, live bands and skills demonstrations. Radlett Lodge School in Hertfordshire also celebrated their 40th anniversary with an event attended by NAS President, Jane Asher. IF YOU’RE in Somerset, you’re very welcome to attend Somerset Court’s Christmas fête on 5 December.

Residents at Somerset Court

*You must be aged 16 years or over to take part in our raffle. YOUR AUTISM MAGAZINE

Research in focus Bringing you news of the latest research into living and working with autism Autism community says research funding too focused on biology and causes Many of you will have had contact with research about autism in some form or other – whether you’ve come up with a burning research question, helped to find participants, been involved as a participant yourself or read about a study’s findings. But does the UK research focus match what people affected by autism want? In the most comprehensive review of UK autism research ever undertaken, The Centre for Research in Autism and Education (CRAE) found that almost £21 million was invested in autism research between 2007 and 2011 by UK government and nongovernment organisations. More than half of the funding was devoted to understanding more about the underlying biology, brain and cognition of people with autism. Comparatively little research funding targeted identifying effective services for those people and their families (5% of funding), diagnosis (5%), interventions (18%) or societal issues (1%). The imbalance in UK autism research

WINTER 2014

Does the focus of UK research match up to what the autism community wants?

– that is, the heavy bias towards biological science and causes – raises an important question: does the research profile match up to the needs and priorities of the autism community? To address this question, the research team tried to understand what type of research the autism community wants and values. They consulted with over 1,600 people with autism, their families, practitioners and researchers to understand what they thought of current UK autism research and where the money should be spent. While many were impressed by the amount of work that goes into autism research, they were not convinced that research had made an impact on their lives. It doesn’t help their child catch the train by themselves or stay safe. It doesn’t say how to get adults with autism into jobs and keep them there. Many people said that they don’t want to just read about research in academic papers. They want to

see real changes and real things happening on the ground for them, for their child or for the person they work with. There was broad consensus that future funds for autism research should be prioritized in those areas that affect the day-today lives of people with autism and their families – research on public services, life skills, cognition and learning and the place of individuals with autism in society. There is a clear discrepancy between the nature of research conducted in the UK and the priorities of the broader autism community. UK autism researchers and funders need to work together with community members to advance progress and make sure that resources reach where they are most needed and can make the most impact. ● To read more about the research, visit bit.ly/1Cwv0e8 or listen to a podcast by CRAE Director Liz Pellicano at bit.ly/1rt3A0c. For more about CRAE’s work, visit crae.ioe.ac.uk.

research • Focus

Magnetic pulses into the brain could help improve motor skills in children with autism A report in the Autism journal based on four separate studies has shown that magnetically stimulating the brain could help improve the motor skills of children with autism and more severe intellectual disabilities. Most previous studies on this subject have been carried out on children with autism who have fewer intellectual disabilities. However, developing handeye coordination skills is also very important for less able children with autism. The studies used a method known as ‘repetitive transcranial magnetic stimulation’ (rTMS). In this approach, an electromagnetic coil sends pulses through the skull to nerves in specific parts of the brain. When used on a part of the brain called the

‘left premotor cortex’ (which plays an important role in selecting the actions required for using objects), the pulses resulted in a clear increase the children’s handeye coordination. In these studies, the improvements in the children’s hand-eye coordination lasted for up to an hour after the magnetic stimulation ended. The researchers recorded even better results when they combined rTMS with a traditional hand-eye coordination treatment. Based on these findings, the authors of the report strongly recommend further evaluations of the rTMS method for managing autism in children with more severe intellectual disabilities. Read more at aut.sagepub. com/content/18/6/638. abstract.

WEIGHTED BLANKETS MAY NOT IMPROVE SLEEP A recent study funded by Research Autism has found that special weighted blankets, supposed to improve sleep in children with autism, may make no difference. Lead researcher Professor Paul Gringras, a consultant sleep expert at Evelina London Children’s Hospital, explained: “These blankets can cost more than £100, so it’s important to know that they actually work. We have found no evidence that they make any difference to these children’s sleep compared with normal weight blankets.” In the trial, the weighted blankets were compared with standard weight blankets that looked the same and had the same texture. The children wore sleep monitors on their wrists to measure the quality and duration of their sleep. Parents also kept a diary of their children’s sleep. While the study suggests that weighted blankets do not deliver the improvements that manufacturers promise, the researchers noted it may still be possible that the blankets relax some children while they’re awake, and that more research is needed in the area.

Find out more or get involved • Read more autism research in the Autism journal at aut.sagepub.com. NAS members get a 30% subscription discount. • Could you support vital research work? One of the ways in which The National Autistic Society supports research is by advertising for participants in research projects on our website. To view current research projects which need participants, visit www.autism.org.uk/research/participate.

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

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

Going to the dentist can be an ordeal for everyone involved

0808 800 4104

I find it impossible to get my six-year-old to go to the dentist. Does anyone have any advice or strategies I could try to make this easier? — Jenny The dentist referred my 10-year-old son to a specialist, as he needed a small filling. We are now having five confidencebuilding sessions to build up to the filling; the dentist is showing him all the tools and explaining what will happen so he has all the facts. So far so good, we are on session three and he is happy to attend. — Jenny

Winter 2014

I would have my inspection at the same time, and the dentist allowed my son to pump the chair up and down, put on the light and do other small jobs. This did the trick. — Helen Our dentist consulted with parents and developed a ‘passport system’ detailing each individual’s needs, fears and whether they would sit in the chair. Extra visits were made to get used to the environment. We found it helpful to time appointments to minimise disruption to routine. — Marion

We were referred to our borough’s community dentist who specialises in dentistry for children with special needs. We found her excellent. — Alison Over 50 years ago, our son, Jimmy, visited a dentist at Birmingham’s dental hospital each Saturday over the summer. Miss Cook gained Jimmy’s confidence through her friendliness, playing games and showing him her work. On the final Saturday she decided to operate on him, drilling and filling teeth. Before she did, she told him everything she was going to do, showed him each instrument and described its purpose. Since that day (he is now 61) he has not only been good about going to the dentist but is always anxious to go if he has the smallest problem. — Gerald

Help me next!

My child is really scared of dogs. If we ever pass one in the street, this can cause a meltdown. Does anyone have any advice to help with this? Email your problems or answers to YourAutismMag@ nas.org.uk or write to: Readers to the rescue!, 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 letter to be published. We reserve the right to edit submissions.

approach

RELATIONSHIPS COME BEFORE SEX

How sex and do I?

relationship education?

Developing adult bodies and sexual interests and feelings is normal progression for all young people, but for those with autism it may be particularly difficult. Lynne Moxon, Consultant Psychologist at Education and Services for People with Autism (ESPA), shares her advice for how to approach the subject of sex and relationships with young people on the spectrum. B Y LY N N E M O X O N

Sexuality can be a very positive experience and the majority of people with autism have sexual feelings, needs and behaviour. Hatton and Tector (2010)* interviewed young people with autism at school, many of whom said they would have benefited from being taught more about how relationships work when they were younger. Providing helpful education at the right time is crucial for making sure people with autism are prepared for this aspect of adult life.

DONâ&#x20AC;&#x2122;T IGNORE IT People who have reached the legal age of consent to sexual activity, which is 16 in the UK for both homoand heterosexual sex, may choose to be sexually active. It is not possible to stop young people from being sexually active by barring privacy, not discussing sex or switching the TV to a different channel. Lack of privacy at home may mean that young people are sexually active in public places, which may mean it is then unsafe and rushed and if witnessed can lead to arrest. Not knowing what sex is can lead to abuse or a young person saying that they have had sex when they have just been kissed or hugged.

Building social relationships by making friends and establishing intimate partners is a key developmental life stage for young adults. Social development is largely experiential, and young people with autism generally have fewer opportunities for social interactions than their typically developing peers. The basis of relationships is friendship; how can you develop an intimate relationship if you have never had a friend? Adolescents become sexually mature approximately four to five years before they reach the emotional maturity to make key decisions. They are growing up in a visual culture in which TV, internet, gaming, cinema, music and pornography often transmit messages indicating that sexual relationships are common, accepted, and at times expected behaviour. Therefore, it needs to be clear to the young person that sex is not compulsory.

WHERE AND WHEN TO BEGIN

The teaching which underpins sex and relationship education should start as early as possible, at the same time as we approach toilet training â&#x20AC;&#x201C; for instance learning about parts of the body, touch and undressing. If your child shows an awareness of how older people are physically different to them, this is a good starting point for discussion. Noticing a beard, breasts or underarm hair is a very tangible, visual sign for a person with autism and can present a clear difference to themselves. Puberty, or the start of adolescence, is now taking place earlier than for previous generations, and is earlier in girls than boys at an average age of ten years. Both young men and women with autism may find the mood swings and physical changes at this stage very hard to manage.

*Hatton and Tector (2010). Focus on practice: sexuality and relationship education for young people with autistic spectrum disorder. British Journal of Special Education, 32: 2 pp69-76

WINTER 2014

MAKE BOUNDARIES CLEAR

Boundaries of body (private parts), of space (private places), and of topic (private subjects) need to be made clear to young people with autism. Parents may not feel ready to begin teaching boundaries because they don’t recognise that their child is growing towards adulthood. But to deprive a person of boundaries is to leave them clueless as to what sorts of behaviour would be acceptable as an adult. Most of the incidents which lead to trouble for young people with autism are ‘boundary violations’ brought on by the impulse of a moment. Touching other people or kissing without consent, for example, is against the law. Inappropriate social networking, mobile phone and internet use can lead to legal intervention if rules are not followed. Make it clear to a young person that the adults supporting them understand they may want more privacy as they grow up and their bodies change. Explain that in order to do this, you will respect closed doors and that they should too.

HOW DO I? • FEATURE

WHAT TO COVER Young people with autism need specialized education. All sex education programmes need to encompass health issues, personal safety and social rules to enhance social communication and understanding. Adult forms of affection and closeness need to be developed. As a minimum, all individuals need to learn the basics of how body parts work and how to stay safe. For young people with autism with intellectual disabilities, the content may need to centre on masturbation and establishing a sexual identity on their own. It is important that a young person is very aware of body changes, privacy rules, personal space and distance, relationships and consent.

BUILD UP CONFIDENCE

Helping young people to feel positive about themselves and their abilities is a crucial aspect of supporting them through puberty. Wearing age-appropriate clothing and developing an individual style, of whatever kind, can help to develop resilience and make it easier to cope with the ups and downs of moving into adulthood. Many young people with autism need directives, rather than suggestions about clothing in order to protect them from bullying. However, this will be a judgment call for a supporting adult based on the individual. Developing your own limits and judgment is always important.

Recommended books and resources

• Making sense of sex by S. Attwood and J. Powell • A 5 is against the law! Social boundaries: straight up! By K.D. Buron • Intimate relationships and sexual health: a curriculum for teaching adolescents/adults with high functioning ASD and other social challenges by C. Davies and M. Dubie • Periods: what you need to know by the Family Planning Association • Sexuality and severe autism by K. Reynolds • Exploring friendships, puberty and relationships: a programme to help children and young people on the autism spectrum cope with the challenges of adolescence by K. Ripley • Taking care of myself by M. Wrobel • Learning disabilities, autism and internet safety: a parent’s guide by Cerebra • For more information about sex education, go to www.autism.org.uk/sexeducation

YOUR AUTISM MAGAZINE

FEATURE â&#x20AC;˘ MY STORY

Karen and Adrian have been together for almost 24 years

winter 2014

MY STORY • Feature

My story

Karen Henry Karen Henry is happily married and a proud mother of five. Undiagnosed until adulthood, she faced troubling and difficult times growing up with a condition she knew nothing about. But having her own family has helped her to move on with her life and leave the past behind.

“When I was little, I’m told that I was a handful to manage. I was sick a lot as a baby and as a toddler was quite often getting into mischief. “As a child I had many obsessions. One of these was buses and I learned timetables and price charts from different destinations. I also became fixated on particular drivers and would spend days riding around on the buses instead of being in school. But I loved looking after my brother, sister and cousins – this is when I think my desire to be a mother began. “At school, I was confused a lot and spent a lot of time alone. I was bullied but I didn’t always know this was the case. I didn’t like being called names, but I enjoyed the attention and often mistook the bullies’ actions for friendship. I seemed to get into trouble frequently and I remember being shouted at for not looking at the teacher. I still find constant eye contact difficult. “We moved house three times when I was young and each time this meant going to a new school. I began puberty when I was nine which was extremely frightening. From the age of 11, I remember feeling on edge and like I was different but didn’t know why. I was teased for not having a dad who lived with me and I began to believe this was the reason I was different. “I ran away from home to find my dad so that I could be like all the other kids but when I found him at my nana’s house (five miles away, which

“I was lost and frightened and just wanted to keep running.” I walked by myself) he just called the police to take me home. I didn’t understand that he wasn’t interested in being a father. I ran away to try and see him a few more times until he moved away to Northern Ireland. I found this hard and blamed myself for a long time. “The more I ran away, the easier it became. If I got into trouble at school, I ran. It always felt better at first but the initial feeling of freedom always gave way to the dread of being in trouble. This didn’t stop me, though, and up to the age of 14 my reaction to every tricky or difficult situation was to run away. Sometimes I would wander the streets, sleep in bus shelters or stay with friends. I always felt happy being alone in the street but didn’t realise how dangerous this behaviour was at the time. Eventually, the Police, social services and the NSPCC talked to me to try to find reasons for my behaviour but I felt I couldn’t explain it. I was lost and frightened and just wanted to keep running. “When I was 14 I went into a childrens’ home. I enjoyed the routine there for a while, but eventually hit a

low and just wanted to die. I didn’t like myself and wanted to be normal. I tried to commit suicide by taking tablets but a few hours later I got frightened and told somebody. I was taken to hospital to have my stomach pumped and was kept in for a week. School at this time was worse than ever. As I had missed a lot and had moved to a new area, I felt lost and didn’t go to school most days. “I was still at school, in Year ten, when I met Adrian and we had our first baby within that year. I had to leave school and attend a pregnant school-girl’s unit two days a week but the only subjects they taught us were childcare and embroidery! I wasn’t able to stay in the childrens’ home and was moved to a mother and baby home run by the Salvation Army. I really enjoyed the year I lived there as they taught me the homemaking and cookery skills I still use today. Their support was fantastic. “Five months after Adam was born, I was 16 and had to go back to school to do my GCSEs. I didn’t fit in at all. I had a baby and Adrian and I had our own home. I only sat one exam and left after 15 minutes. I have extremely sensitive hearing, so I couldn’t cope – all the scraping pencils and background noise made it impossible to concentrate. I left school with just one B in GCSE English. “Adrian and I have now been together almost 24 years and have five amazing children. When we first got into a relationship, it took a

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

FEATURE • MY STORY

Karen and Adrian with their children, Adam (22),Thomas (20), Joseph (17), Alexander (11) and Abigail (10).

lot of getting used to. I often had my own agenda and routines which I had set for myself – and my lack of flexibility could be upsetting and frustrating for Adrian. I suppose it takes a lot of patience and understanding to be in a relationship with someone with autism, which I began to understand later. “I love being a mother. I live for my children and do everything I can for them. I didn’t enjoy mother and baby groups, going to soft play areas or school social events. But because my children wanted or needed me to go, I’d smile and get on with it. Now my children are older, I’m happy to say I never have to face a soft play area again! I love being outdoors and we spend a lot of time going for walks and bike rides, and visiting parks and beaches. Being a mother is a two-way street. I’m rewarded every time they achieve something and each time they are happy. I love to sit and chat with them and to watch them grow. “In 2007, my son Alexander was diagnosed with Asperger syndrome. When researching to see how I could help him, I started to recognise a lot of my own behaviours, so I contacted the NAS about being assessed myself. Because of long waiting lists, getting an assessment on the NHS would have meant travelling to Kent, which at that time was unthinkable. I rarely left the house alone and was obsessed with my rigid routines. I get lost when I leave the house even when I have been to a place several times before. Eventually, my mum and I funded a

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“Being a mother is a two-way street. I am rewarded every time they achieve something and every time they are happy.” private assessment at home. After a month of waiting, I was diagnosed with high-functioning autism. “At first I was relieved. Finally, I had an explanation – I wasn’t naughty or weird, I had autism. I felt sad that I hadn’t been diagnosed as a child but I didn’t feel angry or bitter. “This began a journey for me. I joined a local support group and found it really helpful to talk to other parents and adults with autism. At times, I felt that I fitted in. I slowly formed

Would you like to share your story about any aspect of living or working with autism? Please email YourAutismMag@nas.org.uk or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, and we may feature you in a future issue.

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friendships which expanded enough for me to feel confident enough to join a craft club, and I slowly began leaving the house to socialise. “I always had a strong caring and maternal instinct and I was always fascinated by midwifery. So, I decided I wanted that to be my future. I stopped smoking and joined a slimming group. This gave me the confidence to apply for and gain employment as a nursing assistant at the local hospital. “I have just completed an access to nursing and midwifery course with 57 distinctions and three merits. I’m really proud that out of 600 applicants to University Campus Suffolk, I gained one of the 17 places on the midwifery degree starting next year. I feel my own history means I have a special understanding of families with extra needs, which is where I’d like to specialise. “Without being diagnosed I would still be stuck in my routines, carrying the weight of the past with me. I still have my routines, but I’ve learnt to be more flexible. I still get anxious, and I get lost when I go out, but I am going to buy a sat-nav to help me while I’m training and I have a few relaxation techniques which help with the anxiety. I see my autism as a positive thing overall. It does not define who I am but is part of my make-up, I embrace it and am proud of it. I live for today, for my husband, my children and my family and would like to thank them all for being there for me.”●

MUSIC AND AUTISM • FEATURE

A universal

language Music has the power to affect all people in profound ways, but many have noted the special relationship that can exist between musicality and autism. Your Autism Magazine spoke to three individuals whose work relates to this connection and to the ways in which music can produce particular relief, joy and fascination for people on the spectrum.

THE CONDUCTOR John Lubbock is a world-class conductor and father of Ali (21) who has autism. In 2002, his wife, the contralto singer Christine Cairns, founded Music for Autism, a charity that organises unique concerts at which people with autism can experience high-quality classical music in an environment designed to make them feel comfortable. John says: “We do 40 to 50 days of concerts a year in special schools around the UK. Putting on the concerts is so simple. You don’t have to make it ‘autism-friendly’. You just have to play the music, and the children do everything. They just love it. They jump out of their seats, they sing, they dance – or they may sit still for 20 minutes for the first time in their lives, or just lie down and get comfy. We don’t do anything different because the audience has autism. We have people climbing the walls, screaming and shouting, and it doesn’t matter. The schools write me these wonderful letters and so often they say ‘Could you come every day?’ It just pervades the whole school. It calms the staff, calms the children. It allows them to do things that they never do normally. “The musicians themselves love the immediacy of the response. It’s

“I think music should be used as a therapy for every living creature.” — John Lubbock so gratifying to make a noise and get a ‘Whoopie!’ In a normal concert you have to wait for an hour and a half, then you get polite applause! Occasionally, if a child’s really having a problem, we’ll do something very slow and quiet and that very often calms everything down. But mostly they just love the noise and the buzz. They very often come and stand very close and even put their hands on the instruments. “I think music should be used as a therapy for every living creature. The wonderful thing is the people with autism who attend the concerts don’t have all those inhibitions that you’re taught by your parents and teachers. You can’t stop them doing what they want to do, and as an audience, they respond so wonderfully. Other children ‘learn how to behave’, but in many ways that’s negative – it stops you reacting completely naturally. I can’t do concerts for ordinary children. I can’t break

John hopes the concept of Music for Autism will grow to help children with autism across the world through the resistance. With these kids, there is none. “Music for Autism is also established in the States, we’ve just been to Abu Dhabi and we’re going to Hong Kong. The idea is to train local musicians, and then just let them get on with it. We’d like it to go all round the world.”

YOUR AUTISM MAGAZINE

Feature • Music and autism

Mark believes being hypersensitive to sound led to anxiety when he was younger

THE TECHNOLOGIST Mark Tinley is a musician and record producer best known for his work with Duran Duran, Adamski and The Dandy Warhols. He was diagnosed with Asperger syndrome at the age of 43. Mark says: “For me, some sounds stimulate something that just trigger off this amazing ‘Wow’. As a child, I used to stand on a mound we had in the garden and shout at the neighbouring buildings. I was fascinated by the fact that the sound came back to me. Later, I collected sounds on a dictaphone. Once while waiting for a taxi, I started tapping on a pillar box and, next thing, I had my recorder out and was trying out all the different ways of recording the sound. Then I used the edited sound sample as an instrument in a composition. “My interest in sound is definitely interlinked with having autism. Perception is like a mixing desk – you have different sensory ‘faders’ that can be turned up or down. For me, it’s mostly sound. I hear all sorts of things that other people don’t hear. That’s

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partly due to an ability to distinguish and separate sounds and partly hypersensitivity. When I was in my forties I had a terrible ear infection and the audiologist was really surprised to find that my hearing was similar to someone in their early twenties. “I think being hypersensitive to sound when I was younger is one of the things which led to my anxiety. I’ve always been a very anxious person. In my teens, that turned into panic disorder and eventually agoraphobia. I always thought there must be an underlying cause, and I was finally diagnosed with Asperger syndrome. I went away thinking ‘that can’t be right’. But the more I read, the more it became perfectly obvious. For my whole life, I’d thought there was something wrong with me. Now, I know I don’t need to fix anything, I don’t need to change anything. What I experience is normal for someone on the autism spectrum. “My anxiety has had a massive impact on my career as a musician. One of the things that happens in the industry for people to move forward is a lot of socialising and back-slapping. I don’t get some of the social cues

“Music is an ancient language which predates the spoken word and is easier to understand.” — Mark Tinley and socialising is not particularly enjoyable for me. I used to deal with it by drinking a lot, but some of my drunken antics weren’t particularly enjoyable for anyone else! When it comes to performing, I tend to look at my feet and pretend the audience is not there. One of the best things I ever did was touring with Duran Duran. Although the job was lower status than other offers I had at the time, I chose it because it meant I had to go on a world tour for 18 months, which I knew would be incredibly difficult. It turned out that consistently doing something

MUSIC AND AUTISM • FEATURE

really scary meant that, after the fear subsided, everyday stuff like going on the tube became trivial. “Music is an ancient language which predates the spoken word and is easier to understand. Something which is difficult to express in words can be quite easy to express in music. One of the things that I find with autism is that, at times, I have an inability to identify my emotions. It’s not that I don’t have emotions, I just sometimes don’t know what they are and find them confusing. But, when emotions are expressed through music, I really get a feel for where the musician was coming from.” THE THERAPIST Katya Herman is a harpist and student of music therapy at Berklee College of Music, in Boston, USA. She recently travelled to India to find out about the music therapy practices being used there to help children with autism. Katya says: “Music is a social experience, and it’s a non-verbal language, which is key when working with individuals with autism. Music doesn’t rely on words to express feelings, to communicate understanding, choice-making or to generate trust. And as a social experience, music allows people to develop a sense of themselves in relation to others. For individuals with autism, listening, waiting, turntaking, and sharing can be particularly useful social skills to develop. “In India, music therapy is practised in much the same way as in the UK

“As a social experience, music allows people to develop a sense of themselves in relation to others.” — Katya Herman

Katya’s work taught her that music can be used therapeutically in many ways

and the US. Drawing on the expressive and learning experiences of music, therapists are helping people to improve their level of physical, psychological and socio-emotional functioning through the development of motor, communicative, and social skills. Music has been used in India alongside Ayurvedic medicine for centuries to help with many conditions. “The programmes I worked on used a lot of singing, and we created music with instruments and objects we found on site. We also did a lot of dancing and moving to the music, which can be very helpful when it comes to self-expression, as well as providing a stimulating channel that can supplant some of the self-stimulating behaviour that often comes with autism. “Every individual responds to music (and music therapy) in their own way. Some may have stronger or more immediate responses than others. One person might have very strong rhythmic impulses, and will be far more responsive in this area. Another person might be more receptive to melody, or particular lyrics. “Working with a language barrier taught me a lot about the power of nonverbal communication. I’ve also learnt that there are a myriad different ways to be a music therapist – there is no mould to fit, nor should there be.” ●

What is clinical music therapy? Music therapy is an evidence-based intervention which uses singing, live music making and composition techniques to encourage people to engage in spontaneous and creative musical activities. It is based on the idea that all individuals have the ability to respond to music and sound and that this can lead to positive changes in behaviour and emotional wellbeing.

Find out more • Find out more about music therapy at www.autism.org.uk/music-therapy. • For upcoming Music for Autism concerts, visit www.musicforautism.org.uk. • Visit thesystemcards.com to buy Mark Tinley’s latest concept album, book and set of cards.

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AUTISM-FRIENDLY EVENTS • FEATURE

Tickets, please! Entertainment, making friends, relaxing… There are many reasons for getting out of the house and going to a public event. For most people, this is a fundamental part of everyday life. However, for people affected by autism, going to shows, plays, conferences or even the cinema can be stressful and difficult. Autistic autism educator and consultant, Caroline Hearst, shares her view on Autscape, an annual conference by and for people with autism. We also hear from parent, Lisa Martland, about autismfriendly performances for families.

hen I was diagnosed with autism five years ago in my fifties, I was keen to meet other autistic people. I was delighted to discover Autscape, an event which bills itself as a conference ‘specifically by and for autistic people’. For many who attend it is more than a conference, but a lens which helps us transform the way we see ourselves and an annual opportunity for us to experience what it feels like to inhabit a world set up to accommodate us. What is particularly significant is the opportunity to experience social interaction in an easy, spontaneous way – something which is well-nigh impossible for us in the larger society. People who habitually worry over and avoid all social interaction with new people are able to sit with a group of strangers and have meaningful conversations and even, to their own surprise – enjoy chatting. What makes Autscape unique are the structures and accommodation made for autistic sensibilities, and the behaviour of some of the participants.

“My hope is that as awareness of autism grows, there will be more projects like Autscape which are peer run and truly autism-friendly” — Caroline Hearst

There are quiet areas, a quiet dining room, and a sensory room. It is not unusual to see grown-ups hugging cuddly toys or manipulating stress balls, relieved that no one is telling them to act their age. A vital aspect of Autscape is the unforced acceptance of most modes of communication, or indeed of no communication at all. Coloured ‘initiation’ badges are offered to accommodate autistic communication differences. We are given four coloured badges we can mix and match to suit our mood or personal proclivities. A white or no badge indicates the wearer can regulate their own communication; a green badge indicates a desire to communicate with others combined with difficulty starting a conversation; a yellow badge means ‘only people already on my “yellow list” should initiate interaction with me’; a red badge means ‘emergency communication only’. Last year a new option was added – an orange star meaning ‘I like hugs’. This is in contrast to the general prohibition on touching as many autistics are touch averse). While these measures confirm that autistics may not naturally communicate in typical ways, they also confirm that autistics do want to communicate. For some participants, Autscape is the first time they have knowingly met other autistic people. Lee, a 42-year-old man recently diagnosed with Asperger syndrome said: ‘At Autscape I was meeting people on the spectrum for the first time ever. I was able to begin peeling away many accumulated decades and layers of learned behaviour to mask

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FEATURE • AUTISM-FRIENDLY EVENTS

“More and more venues and theatre companies have been putting on autismfriendly performances of popular shows and plays” — Lisa Martland being a “freak”… and feel sad you have to put them on to pass in a neurotypical world. It was like coming out all over again!’ Laura Williams, an attractive and competent young woman who has attended Autscape since its inception said: ‘Autscape is my only opportunity to meet other autistic adults. I am very shy in my daily life, but at Autscape I feel able to have conversations without people judging me and thinking I’m weird. The enjoyable and successful conversations I’ve had at Autscape have given me enough confidence to approach people in my day-to-day life, and some of these approaches have also led to successful and enjoyable conversations. I am now a lot more self-confident and this has led to me finally feeling able to cope with university life aged 31.’ Of course, there are pitfalls. Some people wearing green badges find that no one comes to talk to them. People who are highly sensitive to noise can be affected when others are noisy around them. People who need quiet to follow a train of thought can have their concentration broken by hecklers. There are no easy answers to solving the difficulties posed by diametrically opposite sensibilities and needs, but the organisers at Autscape try their best and generally navigate these choppy waters successfully and with grace. My hope is that as awareness of autism grows, there will be more projects like Autscape which are peer run and truly autism-friendly and more people will feel able to understand and accept autism in themselves, their family, or the larger community.●

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Lisa and her family have some great memories from going to autismfriendly shows

Lisa Martland is a theatre journalist and has a ten-yearold son with autism. She told us how autism-friendly performances are helping to make a difference to her family. For families like mine, attempting ‘normal’ trips and activities can be a major undertaking. But due to the development of autismfriendly events, a whole range of experiences are starting to open up. Thanks to organisations such as Dimensions – in association with chains like Vue, Cineworld and Odeon – a monthly trip to the cinema has now become an option. At these special screenings, there are no adverts or trailers to sit through and adjustments have been made to the sound and lighting to accommodate sensory difficulties. Most importantly, there is the knowledge that the other parents and carers know what it’s like to look after someone with autism. In addition to cinemas, more and more venues and theatre companies have been putting on autism-friendly performances of popular shows and plays. Changes involve making creative and practical adjustments in order to take into consideration the needs of children and adults with autism,

including briefing the performers, backstage crew and front-of-house staff about how an autistic audience might differ from a mainstream one. These events may not suit everyone, but they have given my family some special experiences that we’ll never forget. Lisa’s top tips for autism-friendly event organisers: 1. Help parents and carers to prepare their children for the event by providing visual stories, for example. 2. Train staff to know more about autism, related issues and behaviours. 3. If an entrance fee is normally charged or tickets sold, consider offering a discount or allowing the carer to attend for free. 4. If appropriate, have designated chill-out zones for carers, parents and families. 5. Try to be aware of people’s sensory issues.

More on this topic • Read our guide for theatres at www.autism.org.uk/guidefortheatres. • For advice for parents on preparing for trips to regular performances at the theatre, visit www.autism.org.uk/theatre. • For the latest autism-friendly or relaxed performances, go to www.autism.org.uk/calendar. • Find out more about Autscape at www.autscape.org. • Caroline Hearst is an autism trainer and consultant. Contact her at caroline@autismmatters.org.uk.

INTERVIEW • KELLY HUNTER

All the world’s

a stage Kelly Hunter is an award-winning actor, director and educator. A performer for over 30 years with acclaimed theatre companies such as the RSC and Vesturport, she has been creating drama games for children with autism to improve their communication skills since 2002. This year she directed a production of The Tempest for children with autism. Her work also forms the basis of a longitudinal research study into Shakespeare and autism*. BY ELEANOR WHEELER

Where does your interest in autism come from? About 12 years ago I decided I wanted to explore the power of Shakespeare outside of the theatre, so I started a very small company to take Shakespeare to children with no access to the arts. We worked in a special school that had a unit for children with autism. The children who came to our first workshops responded incredibly positively and very, very quickly to the games I was playing. For the next three years, they taught me how to teach them. They were all about 12 to 13 years old at the start, and were 15 to 16 by the end – so I was with them in those very delicate teenage years and we invented a whole series of games together. My original idea for the project was an artistic exploration using Shakespeare. I found that there were incredible connections between what Shakespeare can give us, which is an exploration of feeling, and what people with autism find so difficult, which is being able to express their feelings. It has become a sort of life’s work for me, and although I’m

quite far down the road, I still feel like I’m just beginning, and I’m still discovering and inventing things every day. What made you choose The Tempest? I actually started out using A Midsummer Night’s Dream. Then, I worked on Macbeth. It was only after this that I came to The Tempest. In The Tempest, there are two characters who are trapped and have had their liberty taken away – Caliban and Ariel. The themes of imprisonment, liberty, freedom and being taught to speak for the first time are all there in the text. The children loved those themes and could really hook onto the character of Caliban in a way that hadn’t been the case for characters in plays I’d worked on previously. Why is it so important to make theatre accessible? I use Shakespeare not to turn people into theatre-goers, but rather to wake them up to their own lives in the room and to invigorate the spirit.

*For more information about this research, visit shakespeare.osu.edu/autism.

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So are you using drama and Shakespeare as a kind of therapy? In a way, although i’d say it’s also about finding joy, a sense of self and a sense of being alive in the room right there and then. The games and the actual use of Shakespeare are about being in the moment – which is also what all great acting is about. If you can allow the children to get to a place where they can be in the moment, the problems that they experience through their lives just fall away, for those few minutes in which they are playing. Have you seen the show benefit any individuals in a special way? When we were doing The Tempest there was a young man of about 20 who came with his therapist. He thought initially he might just watch, but changed his mind as soon as he came in. We played a game in which Ariel puts Ferdinand into a trance. Ferdinand has to focus his eyes on the hand of Ariel who then ‘leads’ him around the room. All the actors and the children play it together. It’s a very challenging game for some

KELLY HUNTER • INTERVIEW

The drama games throughout the play mean the actors engage with each individual child Kelly has been using Shakespeare to help children with autism for 12 years

“If you can allow the children to get to a place where they can be in the moment, the problems that they experience just fall away, for those few moments.” of the children because they have to keep their eyes focused on one point and move around while also maintaining spatial awareness. We were half way through the game when the young man started speaking. He said he was like ‘an exploded star’ and that ‘he dropped

INTERVIEW • Kelly Hunter

Every performance is different and anything goes in the space

“Acting is a communicative art… it should move you and change you.” from the universe and was spreading his atoms around the planet’. Four to five minutes of incredible metaphysical poetry just poured out of him. Everyone’s senses raised up around the room. His therapist was crying – it was quite remarkable. We finished the game and asked him afterwards if he had planned the words, but he didn’t remember that he had spoken. I’ve done this for a long time and that was a particularly extraordinary experience. What impact does your work have on the lives of the people who participate? My favourite story in proof of this work lasting outside the room relates to a game we play at the beginning and the end of every session that involves chanting ‘hello’ or ‘goodbye’ while beating a heartbeat rhythm on our chests with one hand. Shakespeare uses the ‘iambic’ rhythm of the heart in all his writing and it’s very calming. It’s what you hear in the womb before you’re born. I work with a boy who doesn’t speak and has profound problems with autism. One day he went horse riding and fell and broke his arm, so his teacher took him to hospital. He was very distressed as he hates hospitals. As they sat in the waiting room, this boy, without any prompting from his teacher, took his good arm, placed it on his heart and started beating heartbeats as if he remembered that

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this would calm him down. He was using what he learned in the game to calm himself down. It was amazing. A lot of the research around this work is on how much resonates in the life of the child outside the room. If you get good-hearted, talented actors working one-on-one with some children, you’re likely to get some chemistry and some results – that’s not rocket science, it’s just playing with children whether or not they have autism. For me, the example of that boy is a re-affirmation that someone with autism, even if they might not be able to express it, is taking in what’s going on, remembering a sensation and remembering that if they do that they’ll feel better. What do you and the actors enjoy most about working with young people with autism? The actors find it a very profound experience as well as being incredibly enjoyable. It’s very liberating to be in a play where you sit on the floor with the audience and play some games. It’s totally reversed psychology as an actor. You’re not having to project loudly to an audience of a thousand people. That takes nerves away and removes the actors’ fear of themselves. Great acting is all about the other

person, about affecting them and ‘landing’ your emotions on them. It’s also amazing to engage with a child who suddenly comes to life because of a game you’re playing with them. All of the actors have had to take themselves off and have a good cry at various points because of the amount of emotional energy involved. For me, that’s what theatre and acting should be – it’s a communicative art, and it should move you and change you. I guess that’s why I invented these games all those years back – because I felt frustrated by what theatre can be, which is potentially sterile and formal. In this production, the children have the chance to express themselves. It’s overwhelming how many of them seem to ‘emerge’ so immediately through playing the games, within the transformative space of the theatre.● Shakespeare’s Heartbeat: Drama games for children with autism by Kelly Hunter (Routledge) is published on 5 December. Buy it from www.autism. org.uk/amazon. For more information go to www.kellyhunter. co.uk.

ADVICE • BENEFIT APPEALS

Benefit appeals: how to get it right When it comes to benefits, feeling that you are being treated unfairly can be very upsetting. The Government doesn’t always get decisions about benefits right first time – and you are entitled to challenge a benefit decision if you think it is wrong. However, you must follow the correct procedure and meet the deadlines. Jane Owen-Pam, our Welfare Rights Co-ordinator, explains.

A new condition called “Remember that the appeal tribunals social communication are genuinely independent; this is your disorder has been added.

opportunity to present the real details of the situation to an unbiased panel.”

hen challenging a decision, it is best to seek advice. You can contact the NAS welfare rights service, NAS Autism and Ageing Advice Service or local advice services such as Citizens Advice, Law Centres or independent advice centres. This will help you when preparing for the three key stages of the appeal process. 1. Reconsideration stage The reconsideration stage is compulsory in Wales, Scotland and England when challenging all benefit decisions except for Housing Benefit. For Housing Benefit decisions and all decisions if you live in Northern Ireland you can choose to skip this stage and go direct to the appeal stage. You can ask for a reconsideration by ringing the office that issued the decision or by writing to them. If possible, do both to make sure that your request is received within the deadline of one month from the date on the benefit decision letter. Once you have asked for the reconsideration you can send in any more information that will help them understand your situation better. The office that issued the decision will carry out the reconsideration and will issue a new decision, they can choose to uphold the original decision or change it. Whenever you ask for a reconsideration or an appeal, the benefit could be reduced or stopped if they decide that you do not meet the criteria for the benefit. 2. Appeal stage After the new reconsideration

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ADVICE • BENEFIT APPEALS

decision is issued you can then ask for an appeal against that decision (or you can go direct to this appeal stage if you are in Northern Ireland or are challenging a Housing Benefit decision). You have one month from the date on the new decision letter to request an appeal. You must request an appeal in writing. You can write a letter but you must include certain information so it is better to use the official form which is the GL24 form in Northern Ireland or an SSCS1 form in the rest of the UK. The office that issued the decision should send you the appropriate form. You can also find the links to download the forms at www. autism.org.uk/benefit-appeals. 3. Preparing for the appeal tribunal Once you have sent in your appeal form, you need to prepare your case. 1. Check the rules about the benefit and work out what point you are trying to prove, for example if you are trying to get Disability Living Allowance high rate care awarded for a child you would need to show that the child needs a lot of additional care both day and night. 2. Collect any evidence that helps to show that you meet the criteria. For example, if your Housing Benefit has been stopped because they say your savings are too high you could provide bank statements that show the true amount. Send in any additional evidence as soon as you can – don’t wait for the appeal hearing. 3. After you have requested the appeal you will be sent a copy of the appeal papers which contain all the evidence used to make the decision. Read through this carefully.

Gather together your evidence and send it in as soon as you can.

What is missing? What is incorrect or misrepresents the true situation? Write in to correct any errors and provide more information to help create a more accurate picture of the situation. 4. Remember that the appeal tribunals are genuinely independent; this is your opportunity to present the real details of the situation to an unbiased panel. ●

“Whenever you ask for a reconsideration or an appeal, the benefit could be reduced or stopped if they decide that you do not meet the criteria for the benefit.”

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Find out more This is a summary only. For more information on benefits, visit www. autism.org.uk/ benefits or contact our welfare rights service. To do this, call our Autism Helpline on 0808 800 4104 (Monday-Friday, 10am4pm). The Helpline will take details of your query and arrange a telephone appointment for you with our Welfare Rights Co-ordinator, who will call you back at the agreed time.

ADVICE • STAYING SAFE ONLINE

Staying safe online The internet has become so well integrated into all our lives that it’s easy to forget that there’s an element of risk to being online. For someone with autism, it can be even harder to deal with those risks. We asked a Community and Social Media Manager to explain some of the hazards and advise what you can do to minimize them in order to make the most of everything the internet has to offer. BY ANIL ARORA

The benefits of being online As a community manager, one of the most common benefits I see for people of using the internet is knowing that you’re not alone. Often when someone joins our forum and relates their difficulties, they find it gratifying when other users have had the same experiences. Young adults have shared their difficulties with education or social interaction, often leading to responses from other users about how they’ve learned over time to overcome similar issues. Sometimes it’s just easier to talk to people and share your experiences from behind a screen. The internet can be a great way to make new friends. If you have a special interest, finding others who share this can be the perfect way to connect with people. Be it an interest in trains, Doctor Who, or something craft-related, you’ll probably find forums and groups dedicated to it. Minecraft is enormously popular

among children on the spectrum, and with some research and monitoring you’ll be able to find a safe forum for them to join. However, it’s important to be aware of the risks related to being online, and to know how to address them. There are numerous risks around children or vulnerable people using the internet, and the resources at the end of this article can help you mitigate them. Four risk areas which are particularly relevant to people with autism are misunderstandings, obsessiveness, bullying, and money issues. 1. Not understanding what other people mean Having a lack of understanding of other people’s intentions and meaning can put someone with autism at risk. Misunderstandings and arguments resulting from an inability to discern fact from fiction, or to interpret meaning, can cause upset or confusion.

What you can do… It’s always good to point out that not everything online is true and always try to use multiple sources of information for verification. A tendency to take things literally can make online communication very difficult – but there are specific forums out there for people with autism or special needs where this will be something the moderators and monitors are trained for. For example, NAS forum users will take care in their use of idioms if they know someone has difficulties with understanding them. 2. Becoming obsessive Over-reliance on the internet is something we are all vulnerable to – but this can be particularly problematic for people with autism. The internet can become an easy escape for anyone struggling with real-world issues. Whether it’s games, friendly forums or even research,

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Advice • STAYING SAFE ONLINE

online activities can have an addictive effect on anybody. For people with autism becoming obsessive is even more of a risk. While many of us find it increasingly difficult to be disconnected from the internet, if it verges into causing distress this is likely to be a warning sign for someone on the spectrum. What you can do… It’s best to monitor the amount of time spent on the internet and remember that many devices these days can get online, such as mp3 players. If you’re planning out timetables in advance you could include ‘internet time’, or have it assigned to specific purposes only, such as homework research. Have alternative sources of structured free time planned in as well. However, remember that the internet can be a very welcoming, healing place. If it’s not causing problems then it may be the best thing to cultivate calmness. The NAS has guidance on managing obsessive behaviour which can be found at www.autism.org.uk/repetitivebehaviours-and-routines. 3. Being vulnerable to bullying or abuse Unfortunately, there have been many

tragic examples of online bullying over the last few years. As many people with autism are at higher risk of bullying, it’s natural to be concerned. If the bullying is part of a continuous pattern of abuse both online and offline, you’ll need to speak to either educational professionals or the police. It’s very rare, but there have been instances of children with autism being contacted inappropriately or vulnerable adults developing exploitative ‘friendships’ with those they’ve met online. What you can do… Generally, a lot of risks can be mitigated by having support in place from an appropriate person. The supporter can actively encourage the sharing of information relating to any bullying or abuse which might be happening. This is very important for online safety, and especially when the internet usage involves interacting with new people on a forum (as opposed to interacting with people you already know, such as on Facebook). Make sure account access is shared and that the supporter is aware of what forums are being used, and what their rules are. The NAS community, for instance, doesn’t allow anyone under 16 to join. Many sites offer privacy options and it can be tricky to work through them, as they can change often. Privacy settings protect your content, so always be careful who The internet can become an easy escape for anyone struggling with real world issues

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Obsessive behaviour can develop around internet activities, such as gaming or using forums you add as a friend as they will have access to it. Think about the photos you post and the updates you write, they are there forever and they can have consequences. Material online can be shared or captured by people beyond those it was originally shared with. Not everyone finds the same things acceptable, so do take care what you post about other people. Many sites have options to report or block problematic users or content. Never add strangers as ‘friends’ and make sure you have set up appropriate privacy settings. When using a forum or interacting with strangers, always avoid sharing information that could be used to identify you and where you live. Pick a user name that doesn’t include elements of your full name and use an image that isn’t of you. The NAS community is anonymous, which allows users to discuss anything they may feel they need to whilst protecting

Make sure you have the right privacy settings in place

their identity. The NAS actively removes information that could be used to identify anyone. Other forums may not be the same, so avoid discussing specifics of where you go to school or work, contact details such as emails or telephone numbers, or the names of any professionals you have contact with. Always keep in mind, that while unlikely, there’s always a possibility someone may not be who they claim to be. There have been cases of people using forums to maintain long-term deceptions, which may be particularly difficult to detect if you’re on the spectrum. 4. Misuse of money With the proliferation of mobiles, apps, and tablets, it’s never been easier to shop, game, and find ways to spend money online. Gaming apps on mobiles are particularly popular. But beware, as some games manipulate

you into buying extras in order for you to proceed. There’s been a crackdown on the exploitative nature of these apps as they tended to take advantage of children and vulnerable people. What you can do… If you are a parent or carer and are worried about this, most devices can now be set up to require parental permission in order to purchase anything – so check this is switched on. Android tablets now offer the option to run separate user profiles which can be used to restrict access. Be wary of

apps that store your card data, such as online shops, which are designed to smooth over the purchasing process. Don’t leave passwords written down and lying around and try to make them difficult to guess. Secure software exists for storing your passwords and security details – but they’re only as secure as the password you use to access them. As long as you are taking sensible steps to mitigate the risks, don’t be put off using the internet. In most cases it’s worth it, as it can be such a boon to people who may be isolated or looking to make new friends. ●

Useful websites and resources • Childnet’s STAAR Toolkit: www.childnet.com/resources/star-toolkit • The Carers Trust: www.youngcarers.net/interactive/staysafe • Visit our community at community.autism.org.uk. Visit our Facebook page www.facebook.com/YourAutismMagazine Visit our Twitter page twitter.com/Autism

YOUR AUTISM MAGAZINE

Our two Community Care Advisers, Gemma and Clarissa

Community Care Service

How the NAS can help you Our Community Care Service provides information and advice on how to get support from social services, deal with care package problems and challenge decisions made by social services for children and adults up to the age of 40.

hat is the Community Care Service? We are a small service run by two part-time advisers. We provide information and advice on how to get support from social services, deal with care package problems and challenge decisions made by social services for children and adults up to the age of 40. We also advise on blue badges, disabled person bus passes and charging for social services. People with autism over 40 – or those supporting them – can get advice from the Autism and Ageing Service. What kind of advice do you provide? We offer 20-minute phone appointments and email advice for people with autism (including Asperger syndrome) and their family and friends. We can also provide advice by post if required. We inform people of their rights and how to challenge decisions that they aren’t happy about. The service is very popular. I think this is the case because people increasingly

want to know what their rights are and how to make sure that they and their loved ones are getting the right support.

someone has already been through the complaints process and would like to get legal advice or contact the local government ombudsman.

What are the questions you hear most often? The most common issue we encounter is problems with an existing package of support from social services. Sadly, another common topic is a person with autism being refused an assessment of their needs by social services, and carers not receiving the support that they need.

How do you access the service? The best way of getting in touch is to email us with the full details of the enquiry. We can then reply with advice. Alternatively, a phone appointment can be arranged by calling the Autism Helpline. ●

Do you provide advice on complaints? Yes, this is something that we often provide advice on. We can discuss the complaints process and next steps if

Contact the Community Care Service by emailing communitycare@nas.org.uk or calling our Autism Helpline on 0808 800 4104. Lines are open 10am4pm, Monday to Friday (free from landlines and most mobiles).

“The service is very popular. I think this is because people increasingly want to know what their rights are and how to make sure that they and their loved ones are getting the right support.”

Did you know?

The service is funded by NAS supporters. Without that help, it would be unable to continue. Visit www.autism.org.uk/getinvolved to find out how you can donate or fundraise to help our charity to continue its work.

YOUR AUTISM MAGAZINE

RESOURCES

CBT to Help Young People with Asperger’s Syndrome or Mild Autism to Understand and Express Affection: A Manual for Professionals AUTHOR: Tony Attwood and Michelle Garnett PUBLISHER: Jessica Kingsley Publishers PRICE: £19.99 VERDICT: A good programme for professionals wanting to help young people develop their ability to recognise, express and enjoy affection. DESIGNED FOR USE by teachers, psychologists and therapists, this programme can be used either with individuals or small groups. It aims to help young people develop their ability to recognise, express and enjoy affection. There are three parts to the book: part one gives an explanation for why children and adolescents with autism might need support understanding and expressing emotion, outlining the theory and evidence for the programme. Part two explains how to use it, including how to assess the ability to communicate affection, and how to run group and individual sessions. Part three outlines each of the five sessions and includes the discussion topics and activities to be included. Whilst the sessions are structured there is room for flexibility. The book includes all the assessments and worksheets you need for the programme and you can access them online too. They are designed to be suitable for children and young people of a range of ages.

Giveaway The winner of last quarter’s competition to win Asperger syndrome: A Helping Hand, is Julie from Southampton. Read her advice on communication at www.facebook.com/ YourAutismMagazine. For a chance to win a set of Step Outside Guides email yourautismmag@nas. org.uk with your name and contact information by 10 December.

Reviewed by Claire King, Trainee Clinical Psychologist at University of Surrey. To order books featured on this page and elsewhere in the magazine, go to www.autism.org.uk/amazon

Our six favourite… Stand-up comedians who have or talk about autism

JOHN WILLIAMS UK comedian John Williams’ material relates to the joys, difficulties and funny moments that come from being a parent of a son (‘The Boy’) who has autism and cerebral palsy. John says we need to celebrate ‘just being’ as well as skills in people with disabilities. www.mysonsnotrainman.com

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RIA LINA An awardwinning comedian and musician with Asperger syndrome, Ria’s comedy covers many varied topics, including her three children, education, current affairs and getting people to talk about disability. She also performs ukelele songs as part of her routine. Watch her at: www.youtube.com/user/rialina

DON BISWAS Don’s unique comedy combines razor sharp one-liners, with humour about having Dyspraxia and traits of Asperger syndrome, and the effect it has on people, as someone from a middle class Indian family. To see him in action, go to: www.youtube.com/ watch?v=WIBjOKs8jsU

RESOURCES

No More Victims: Protecting Those with Autism from Cyber Bullying, Internet Predators, and Scams

Visual Support for Visual Thinkers AUTHOR: Lisa Rogers

AUTHOR: Jed Baker

PUBLISHER: Jessica Kingsley Publishers

PUBLISHER: Future Horizons

PRICE: £29.99

PRICE: £6.96

VERDICT: Practical and easy to use – an excellent resource

VERDICT: As it’s American, some content is irrelevant

but it contains some excellent advice nonetheless. THIS BOOK IS FOR TEACHERS, parents of children with autism and adults with autism. It aims to help children and adults on the spectrum to keep safe while using the internet and social media sites. The book doesn’t go into very much detail about why people with autism are particularly vulnerable to experiencing abuse through the internet. However, it does detail how parents and teachers can protect children with autism, and how children can protect each other by promoting good e-safety advice. Although the book covers American laws, practices and phrases, it contains some excellent advice and pointers, including ‘Be a hero, not a bully’. With examples of scams and advice on what to do if someone was to receive a scam email, there is also an insider’s view of keeping safe in the digital world written by an adult with Asperger syndrome. Reviewed by Kiranpreet Rehal, NAS Safeguarding Project Manager

TOM PAPA Comedian, actor, writer and TV host, Tom Papa has spoken about the conflict he feels about the need for comedy to shock audiences alongside the hurt this can cause as a parent of a child with autism. Read an article by Tom on this topic published on laughspin.com by going to: bit.ly/1b3dle2

THIS BOOK AND ACCOMPANYING DISC will be very useful for teachers, therapists and anyone working with people with autism. The author explains factors which are important for people with autism and builds on these ideas to form practical and adaptable ideas and concepts. Broken down into manageable chunks, the book guides you through the methods of using visual material in a clear and motivating way. Practical examples from the author’s own experience support the ideas. This is such an easy and enjoyable book to read, and the author’s enthusiasm comes through and is very motivating. The material on the accompanying disc reinforces the concepts and ideas discussed. An excellent resource! Reviewed by Karen Kerr, Speech and Language Therapist, NAS Scotland

ASPERGERS ARE US This unique comedy troupe made up of four young men on the spectrum is sadly no longer together, but you can view their material online. Their comedy focuses on absurdity and slapstick humour. Find out more about their story at: bit.ly/1qLlU7a

JENNIFER BELANDER Based in the UK, Jennifer Belander’s educational comedy show MomAutism talks about her teenage son who was diagnosed with autism when he was three. You can watch some of her material in the ‘Reel’ section of her website at: www.jenniferbelander.com

YOUR AUTISM MAGAZINE

WEREWOLVES ICE HOCKEY

We’re ice hockey players! ‘The Werewolves of London’ are a London ice hockey team for people with developmental disabilities. Some of the players with autism say that the sport has improved their confidence and social skills, as well as offering good exercise and, of course, lots of fun.

HEN BRADLEY Hildreth was learning to skate, he had an accident. “I fell because my skates were blunt,” he said. “I fell forward and my teeth went through my lip. They found out that I had autism when they were sorting out my lip and they said ‘why don’t you go and try Werewolves?’” The ‘Werewolves’ were established in November 2002 by Mike Dwyer, whose adult son Iain has autism. Iain learned to skate as a child when his family were living in Toronto, home, at the time, to the only ice hockey team in the world for people with developmental disabilities. When the Dwyers returned to the UK, they brought Iain’s positive experiences of ice hockey with them. Today, other team members with autism like Bradley say that playing for the Werewolves has greatly improved their confidence and communication skills. The camaraderie amongst the players and their shared interest mean they often establish strong relationships. “It’s good because [the players] all discuss their skills and the moves and how they could improve themselves,” said Bradley’s dad Jerry, who is also a coach with the Werewolves. As their skills have improved, a number of players have taken on positions of responsibility within the team. Brothers Christopher and Nigel Williams, both of whom have autism, are long-term members. Christopher started as a beginner and is now a coach; Nigel is the kit

Bradley says playing ice hockey has made him more confident

manager. Nigel said: “When I joined I could just about stand on ice, I couldn’t really move or anything. All our players are at completely different levels so the coaches allow for all of the different levels whereas with mainstream, you are competing more – like in football you all have to be the Rooney. With Werewolves you’ve just got to get onto the ice. Everyone can progress at their own speed.” Christopher, who also plays for a mainstream team, said: “For me it has helped me to be more confident with strangers.” He decided to become a coach to help the club, and in the future plans to progress through the coaching levels. Werewolves founder and manager Mike Dwyer hopes that others will get involved. When asked what his visions for the club’s future were, he answered: “Expansion. The more people that participate, the cheaper our running costs will be and the more flexible money we will have in the pot to spend on things that are really important, like airfares for our annual tournament.” “We went to one in Boston where there were 1,000 athletes, 66 teams, it was huge. The tournament participation is as important as the training sessions as it gives you that sense of purpose at the end of it all.” Mike and the other coaches at The Werewolves of London are working with us on the Active for autism project (see page 6). ●

Find out about getting involved at werewolvesoflondon.org.uk. If you have autism or know someone with autism doing something amazing, we’d love to hear about it. Email YouAutismMag@nas.org.uk. Message us on Facebook at www.Facebook.com/YourAutismMagazine.

WINTER 2014