Your Autism Magazine - Spring 2015 by The National Autistic Society

WINNER OF THE 2014 MEMCOM AWARD FOR BEST CHARITY MAGAZINE

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 49 – NO 1 • SPRING 2015

SPEAKING OUT

MEDALS AND MELTDOWNS

Why is it so important to have your say?

How Jo became a kickboxing champion

My brother, Yah-yah

ALSO IN THIS ISSUE:

One sister’s fight to get the right support

PREPARING FOR A NEW BABY OUR STUDENT SUPPORT SERVICES WHAT IS ADHD?

THE SPECTRUM ON SCREEN An actor and director on depicting characters with autism

“Autism is fascinating” Matt’s life as a carer

Spring 2015 EDITOR Eleanor Wheeler WRITERS 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 © Adam Scott www.adamscott.co.uk 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 Spring Vol 49, No 1 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.

appy new year! I hope you’ve had a good start to 2015. This issue, we’ve brought together a real variety of reading matter to see you into the spring. Two professional carers and a parent-carer tell us about everyday life supporting people on the autism spectrum – the good bits, the challenging bits and what gets them up in the morning (page 25). We spoke to an actor and director about how they went about portraying characters with autism in their new films out this year (page 21). You can also read about the successes and struggles of a world-champion kickboxer, get advice on using positive reinforcers to manage behaviour, as well as tips on preparing for a new baby.

Contents

As ever, we welcome feedback so please email us at YourAutismMag@nas.org.uk or visit our Facebook page.

41 Spotlight on support: Student Support Services

04 News 10 Research in focus 12 Readers to the rescue 14 How do I... use positive reinforcers? 16 Feature: My story 21 Feature: Autism in film 25 Feature: Life as a carer 28 Interview: Kabie Brook and Craig Goodall 33 Advice: Preparing for a new baby 37 Advice: What is ADHD?

44 Resources 46 I’m... a kickboxing champion!

Eleanor Wheeler EDITOR

Visit our Facebook page www.facebook.com/ YourAutismMagazine

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14 YOUR AUTISM MAGAZINE

News

A round-up of the stories that affect you Young Ambassador inspires

Claude and Vida met their local candidates

General Election campaign launches Ahead of the General Election on 7 May, we’ve launched our I’m One campaign to raise awareness of autism among your political candidates. When we have successfully campaigned for changes to benefit people on the autism spectrum in the past, we’ve usually needed the support of politicians. These politicians support us because of the stories they’ve heard about life with autism from their constituents. To make sure candidates are hearing about autism we want

spring 2015

you to host a candidate coffee morning. The premise is simple. Arrange to meet your candidate alongside a small group of family or friends for 20 minutes or so. You can talk about whatever you like: your experiences of accessing support in school or when finding work, or simply how autism affects you and your family. Claude and his mum (pictured) did just that when they met their local candidates for Hornsey and Wood Green. Find out how you can get involved at www.autism.org.uk/ImOne.

“Why be normal?” asks Rosie King, a 16-year-old NAS Young Ambassador, in a heartfelt speech now available on our website. Rosie was invited to speak at the TEDMED health conference in Washington DC after organisers saw her BBC film My Autism and Me, about growing up with Asperger syndrome. In her TEDMED talk, Rosie challenges stereotypes of people with autism and discusses individuality. Rosie said: “At the end everyone stood up and clapped. It was one of the most amazing moments of my life.” Sharon King, Rosie’s mum, added: “The side to Rosie that most people don’t see is the help she gives to her brother and sister, who have complex forms of autism. Her compassion has always been a huge comfort for me and I’m delighted she’s been able to share this with the rest of the world.” Watch Rosie’s speech at www.autism.org.uk/rosieking. See My Autism and Me at bit.ly/1xKKfxy.

Rosie’s speech earned her a standing ovation

SPRING 2015 • NEWS

News in brief

School news

Noriko is a cultural ambassador for our charity

IN TUNE WITH PARENTS’ NEEDS Renowned pianist Noriko Ogawa is playing a series of concerts in April and May for parents and carers of children on the autism spectrum. When Noriko moved to the UK, she stayed with the family of Jamie, who has autism. She spent many nights chatting and drinking tea with Jamie’s mother, Janice, while they waited for a wakeful Jamie to

calm down and rest. This inspired her to start ‘Jamie’s Concerts’ for carers who need a break and the opportunity to go out. Concerts are held during the school day. Afterwards, Noriko serves tea and the audience have a chance to chat. See the full list of Jamie’s Concerts at uk.jamiesconcerts.com.

THEY’VE GOT THE POWER Stephen Wiltshire, an artist who draws detailed cityscapes, and has autism, features in a new list of the most influential people in Britain with a disability or impairment. The judges of the Power 100 list stated: “Stephen, the world’s leading architectural artist, displayed artistic dexterity from an early age. For more than 20 years, his work has been displayed across the globe. Stephen has the incredible ability to draw the skylines of many of the world’s leading capital cities from memory.” Stephen Hawking

We’re delighted that specialist residential care at Sybil Elgar School in Ealing (currently rated outstanding by Ofsted) has been extended to a 52-week provision for pupils there. Furthermore, our new free school, Church Lawton School in East Cheshire, opened last month. For information about NAS schools, go to www.autism.org.uk/schools.

Training pays off for Conor, Nicholas and Edward In the winter edition of the magazine, we told you about Conor, Nicholas and Edward – three young men on the autism spectrum with learning disabilities and associated challenging behaviours – working on their Duke of Edinburgh Bronze Award. Since then, the boys have passed their awards. “We are all buzzing with such excitement and pride!” said Nicholas’ mum, Marie.

Recognition for Welsh Assembly

topped the list, compiled by the Shaw Trust, while Stephen Fry came in at number five. Read the full list at bit.ly/1BB0rlD. Who would you have included on the list? Email YourAutismMag@nas.org.uk.

In January, the Welsh Assembly received an Autism Access Award, which is designed to reassure people with autism, their families and carers that facilities are autism-friendly. Presiding Officer, Dame Rosemary Butler AM, said: “For democracy to truly work in Wales, its law-making institution must engage with everyone… That means ensuring that our facilities, services and information are accessible to all.”

Last year saw our inaugural Ride for Autism across picturesque East Anglia. This year we hope you’ll join us again on 22 August for a 50-mile cycle ride starting in Cambridge. All riders get free training and discounts on bike gear! For more information or to sign up email Elly.Badcock@nas.org.uk.

YOUR AUTISM MAGAZINE

NEWS • SPRING 2015

Poetry prize for young woman on autism spectrum

Hot wheels: Bobby and Rogerio

A NEED FOR SPEED Since telling you about Flashman in August, we’ve heard about more amazing young racing-drivers who are on the autism spectrum. In October last year, Stuart Middleton (15), who has Asperger syndrome, won a £60,000 Ginetta Junior Scholarship to enter the 2015 KICK Start Energy Ginetta Junior Championship. “It’s been an amazing and fantastic time for me”, said Stuart. Bobby Trundley (15), who has autism, also got to the latter stages of the competition and narrowly missed out on reaching the final. His mum Jackie said: “We are immensely proud of Bobby. The instructors said his driving was faultless. He has worked very hard.” Rogerio Mendes (11), who has Asperger syndrome, is also an aspiring young racing driver. In the last year he took part in three different junior championships. His dad said: “To say he loves it is to put it mildly… From the age of four, he could name a race track and country of origin just by looking at one picture of it.” Well done to all the boys and their parents.

Kate Walters (17) from Coventry was one of seven winners of the Poetry Society’s SLAMbassadors 2014 national youth poetry slam last Autumn. The annual competition, which has been running since 2002, received approximately 900 entries from all across the UK.

Kate, who has autism, said doing the competition gave her the opportunity to stand up and speak without the need to conform to social rules. She said: “I can just talk, and because of that, it’s the best platform for communication that I could possibly imagine. To have the opportunity to bring that to a wider audience is just amazing!’’ Her prize includes ongoing support from the Poetry Society, a year’s mentoring from spoken word artist and artistic director of the competition, Joelle Taylor, and membership of the Poetry Society. Kate plans to write a special poem for World Autism Awareness Week. Find out more about the competition at slam.poetrysociety.org.uk.

RECORD DEAL FOR POP-PUNK MUSICIAN WITH ASPERGER SYNDROME Daniel Jones (28) from Holyhead, Wales is a multi-musician in pop-punk band Straight Jacket Legends, which has recently been signed to Sony RED / SMDR in the USA. Daniel, who has Asperger syndrome, his friend Jake Daniel (second from left) hopes and Jake’s brothers Cane and Tommy to pursue a career in music formed the band in 2012. Their music has been played on Amazing Radio, Kerrang Radio, BBC 6 Music and BBC Radio Wales. Daniel says: “Having Aspergers has a direct influence on my music as I feel a need to constantly create. When I am not creating I feel very depressed and cannot function properly. Being in the band helps me focus my creativity and feel comfortable and happy! I would love for music to be my full time job in the future and to share what I can create with everyone who likes it.” Watch the band’s debut video at bit.ly/1vzaUbX. Learn more about the band at www.straightjacketlegends.co.uk.

World Autism Awareness Week is coming soon! From 27 March – 2 April we have a whole week of activities planned, to help you to join us in celebrating difference. There are loads of ways you can get involved, from a pink and purple bake-off to putting on your onesie for the return of Onesie Wednesday™. Get autism noticed in your community! To sign up, visit www.autism.org.uk/waaw.

SPRING 2015

SPRING 2015 • NEWS

SIBLINGS WHO HAVE AUTISM WIN JUDO SILVER MEDALS A brother and sister, both of whom have autism, recently won silver trophies at the Alcides International G Judo Tournament in Holland. As part of the Scottish Special Needs squad, they competed against judokers from all over the world. Olivia (12) is diagnosed with ASD and Edwin (11) with ASD, ADHD, OCD and dyspraxia. Edwin asked to start judo classes after trying it at school. His mum Jenny wasn’t sure at first as he’d struggled with other sports, but it turned out he loved the classes. Olivia started a few weeks later. Now orange belt, they both aim to have black belts by the time they are 18. Olivia said: “Judo has transformed my life. It has made me so confident and I have a huge circle of friends through it.” Edwin said: “I love

Representing Scotland: Edwin and Olivia

judo – it has made me feel better and made me strong and I don’t feel shy or embarrassed anymore.” Jenny added: “Judo has provided Olivia and Edwin with confidence, structure, discipline, friendship, fitness and support that I could have never imagined possible… I would certainly recommend judo as a sport that can support kids with autism.” Find out about Judo Scotland’s disability sessions at www.judoscotland.com/ development/disability.

Are you keen to get fit this year? Why not sign up to a running event? It will give you something to train for and raise vital funds for the NAS. Find out more at www.autism.org.uk/running.

VETERAN ROCKERS RELEASE CHARITY SINGLE Former Yes singer Jon Anderson and Counting Crows bassist Matt Malley have released a single to raise money for three different charities, including The National Autistic Society. You can download ‘Family Circle’ on iTunes, and watch the music video at www.youtube.com/watch?v= hATdN-XMBSQ. Rob Ayling of Voiceprint Records, the record label which released the song, has a son

Get your free copies today

NEW RESOURCES ON SAFEGUARDING We’ve published a new, free book aimed at professionals with limited experience of child protection, or of working with children on the autism spectrum. We’ve also worked with the NSPCC to produce a version of their guide to protecting children from abuse especially for parents and carers of children on the autism spectrum. Order the book at

www.autism.org.uk/safeguardingbook and download the NSPCC guide at www.autism.org.uk/pants.

AUTISM SHOW COMES TO BIRMINGHAM The Autism Show will be coming to the NEC Birmingham for the first time on 19 and 20 June 2015. The event will also visit London and Manchester. To follow the latest news on the event and to book tickets visit www.autismshow.co.uk. DON’T FORGET to quote “NAS15” to get your NAS member discount

Hunter with his friend Rick Wakeman, former keyboard player of Yes

New for 2015: the NEC

with Asperger syndrome and learning difficulties. Hunter loves progressive rock and has learnt a lot of life skills from helping teams at gigs when touring with his dad.

YOUR AUTISM MAGAZINE

Research in focus Bringing you news of the latest research into living and working with autism How should we describe autism? Our research found that adults on the autism spectrum preferred the terms ‘on the autism spectrum’ and ‘autistic’

When we talk about autism, there are a range of different words and terminologies we can use. The ones we prefer might depend on our context – whether that’s a medical or research setting, at home with friends and family, or with peers. The National Autistic Society has

conducted a piece of unprecedented research to understand the way people describe autism in the UK today. Almost 4,000 people responded. This large and representative group included adults on the autism spectrum, their parents, families, carers and professionals working in autism or a related field. You may have participated yourself. We discovered that a wide variety of terms are used, and that people have very different views about which one is best.

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Looking at all of the responses

together, people rated the term ‘on the autism spectrum’ the highest. When the responses from each group were looked at separately, we found that adults on the autism spectrum preferred the terms ‘on the autism spectrum’ and ‘autistic’; parents and carers of individuals on the spectrum preferred ‘has Asperger’s or autism’ and ‘on the autism spectrum’; and professionals working in autism or a related field preferred ‘on the autism spectrum’ followed closely by ‘person with autism or person with Asperger’s’. Some traditional autism terms are barely in use at all any more. Only a small minority of people reported using the terms ‘Kanner’s syndrome’, ‘Kanner’s autism’, ‘autist’, ‘pervasive developmental disorder’, ‘classic autism’ and ‘low-functioning autism’. At The National Autistic Society

we do not view ourselves as the voice of people on the autism spectrum. Rather, we aim to act as a microphone through which the

voices of those whose lives are touched by autism are amplified. What we have learnt from our research is that there are a variety of preferences when it comes to describing autism. We therefore believe it is reasonable to use different terms when communicating with different audience groups. When we communicate with a broad audience, we will avoid using the terms that were rated as ‘disliked’ or ‘strongly disliked’ by many of our respondents, and we will favour the term ‘on the autism spectrum’ as this was the most widely preferred. But when we communicate with a specific group, we will aim to use the specific terms they prefer. We know there are many voices

within the autism community and we try our best to reflect them. To find out more about how The National Autistic Society intends to implement the outcomes of the research, keep an eye on the news section of our website. ●

research • Focus

Police interview techniques unsuitable for people with autism A joint study by researchers at the University of Bath and City University London has shown that conventional police interview techniques are ineffective when used with people on the autism spectrum. More than 400 UK police officers provided information for the study, which looked at what does and does not work when police interview people on the autism spectrum. It concluded that police find interviewing and interacting with witnesses and suspects with autism a real challenge. The research, funded by the Economic and Social Research Council (ESRC), highlighted that the ways officers have been taught to interview are at odds with what is needed when interviewing people on the autism spectrum. Existing interview techniques tend to focus on open questions, only narrowing down to closed questions later. But research shows that people

with autism may need focused questions from the outset. Other problems with interviewing relate to most settings for interviews being unfriendly sensory environments making it hard for people who have autism to focus on the questions, and officers finding it hard to build rapport, which usually plays an important part in interviewing. The researchers – Dr Katie Maras, University of Bath, and Dr Laura Crane, City University London – are calling for better training of police and criminal justice professionals as, at present in the UK, these groups currently have no standard compulsory training about autism.

New software to make reading easier A consortium led by researchers from the University of Wolverhampton has developed new software to help people on the autism spectrum read and interpret written documents.

Open Book is new software which adapts documents into a format that is easier for those on the autism spectrum to understand. It can be used with various types of texts, including school textbooks, children’s books and literature. Functions include replacing complex words with simpler alternatives or appropriate images and changing long sentences into a sequence of shorter, easier ones. It can also be personalised to an individual’s needs. The software was created as part of the EU-funded FIRST (Flexible Interactive Reading Support Tool) project – a large, transnational research study that brought together partners from across Europe. It has been subject to clinical evaluation by around 300 participants. Dr Constantin Orasan, a member of the University of Wolverhampton’s Computational Linguistics Research Group, said: “Open Book will empower people with autism to read documents with confidence and autonomy. As a result, their social inclusion will be increased as they gain better access to educational, vocational, cultural and social opportunities.” Find out more at www.first-asd.eu.

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

what a dog will typically do. My little one used to be upset when dogs sniffed her, but once she was able to understand more about dogs’ behaviour, it was easier to explain why they sniff, jump, lick, bark etc. — Trish

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

0808 800 8104

My son was the same so I got a dog! At first he wanted to know why she lived with us and not her own mum and dad. I told him that we were her family and now he refers to her as his sister! He’s great with all dogs now. I know it won’t work for everyone but it really did for us. — Lee

Fear of dogs could be for various reasons, including sensory sensitivity

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? — Debs If the issue is to do with the dog barking, try using ear defenders so that the noise isn’t as loud. — Enfys MAKE SURE you stay close to your child and put yourself between them and the dog. Talk

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to them calmly, offering reassurance. If the dog is running free ask the owner to put them on a lead. I’ve found that most are happy to do so. — Tamsyn DEPENDING ON their comprehension, try reading books with the child about dogs which are aimed at children. They should explain why dogs do what they do. Or, try using social stories to explain

Help me next!

My adult son wants to start dating but doesn’t know where to start. Does anyone have advice on how he could meet people safely? — Chris

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.

use How do I?

positive reinforcers?

Every day we all behave in certain ways to achieve particular outcomes. A worker turns up to work to earn their wages, a teenager cleans their room to go to a party and a child draws his mum a picture to be told he did a good job. All of these are examples of ‘reinforcement’. The behaviour is reinforced by a good result, meaning that it is more likely to be repeated in the future. This is an effective behaviour management strategy for working with challenging behaviours presented by children and adults with autism.

PROVIDE IT STRAIGHT AFTER THE BEHAVIOUR

BY JOANNE COULSON BCBA

Positive reinforcement is a key concept in Applied Behaviour Analysis (ABA) which can be used to help people on the autism spectrum to learn new behaviours. A positive reinforcer is something that is added after the behaviour happens which increases the likelihood that it will happen again. Anything can be a reinforcer and what works varies from person to person.

ESTABLISH WHAT WORKS Different people prefer different things and offering items that are not reinforcing to a person will have no impact on their behaviour. There are two main types of reinforcers: primary (basic needs, eg food) and secondary (learned, eg money and praise). Make a list of the things that the person likes. Consider things that they spend time doing. The more time they spend doing something, the more likely it will serve as a good reinforcer.

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Give a reinforcer to the person immediately after the desired behaviour. If there is even a short delay, a different behaviour may be reinforced. Make sure the reinforcer is easy to give and can be consumed quickly, or easily taken away. For example, if you’re giving the person a food item, provide only a small amount.

PREVENT BOREDOM

Don’t let the person become bored of the reinforcer. If this happens the reinforcer will stop working. Using a variety of reinforcers will prevent this from happening. Plan reinforcement around naturally occurring events. For example, use food as a reinforcer before lunch – the person will be hungry and therefore more likely to find the food item reinforcing. It is a good idea to have a few different things in mind that can be used as reinforcers so that you can offer variety. The amount of reinforcement and the level of the person’s deprivation will affect how well it works. For example if the person has free access to the reinforcer in other settings, it may stop being effective. Additionally if the person has received a lot of a particular reinforcer already during the day, they may become bored of it.

HOW DO I? • FEATURE

4 6 GATHER DATA

Don’t rely on intuition or opinion as to whether a reinforcer is successful or not. Keep a record of whether the person is presenting the target behaviour and if it is increasing over time. If the desired behaviour is increasing then the reinforcer is being effective. If there is no change then the reinforcer needs to be changed. You can try changing the reinforcer itself, or the amount and frequency of delivery.

USING FOOD AS A REINFORCER

Sometimes it may seem that food is the only reinforcer available. However, this may just be because the person has limited experience of other items and activities. Be creative and try new things. Reinforcers can be anything, including playtime with a certain object, an activity, a sensory experience, a break or interaction with someone. Although skills teaching can be timed to take advantage of times the person is more likely to be hungry, withdrawing food is not ethical. If working with adults it is important not to withold preferred food items as an adult has a right to access the food they want. You could try pairing foods with other reinforcers to create new secondary (learned) reinforcers. For example, delivering praise at the same time as a chocolate chip. Over time, the praise becomes reinforcing and the chocolate will no longer be needed.

To sum up

FADE THE REINFORCER

When the person is first learning a new skill, the reinforcer should be given after every correct response. This is important so that the person makes a connection between the behaviour and the reinforcer. Once it starts working, you can only give the reinforcer after every other (or third or fourth) response. When teaching a new skill, it can be helpful to draw up a plan of what the skill is and when to present the reinforcer. This will make sure everyone supporting the person does it in the same way and will mean the person learns the skill faster.

GENERALISE Once a target behaviour is happening consistently, it’s important to generalise that behaviour so that you can withdraw the reinforcer without stopping the behaviour. You can do this by making the reinforcers more natural. This means using things that others will use to reinforce the person. It is important to remember that this can take time and if the desired behaviour stops, it is okay to go back a step to contrived reinforcement. You can try generalisation again once the skill has been strengthened.

• Using positive reinforcers requires careful consideration but it can be an effective method to help teach new behaviours and skills. • Make sure you use reinforcers which are tailored to the person and consider their changing needs throughout the day. • Always monitor how you’re using them to make sure that they continue to be effective and are having an impact. • Use a variety of different reinforcers and make sure that if you use food items they are paired with other forms of reinforcer so that the use of the food can be faded.

Recommended books and resources

• For information about strategies and techniques for behavioural interventions, visit www.autism.org.uk/behavioural-and-developmental-interventions. • Find out more about Applied Behavioural Analysis (ABA) at researchautism.net/ applied-behaviour-analysis-and-autism.

YOUR AUTISM MAGAZINE

MY STORY • Feature

My story

Yah-yah * and Rebecca As a little sister growing up, Rebecca witnessed her parents’ struggle to get support for her older brother, who has autism and complex learning difficulties. She tells us about the pain and injustice she experienced, seeing him without the right care – and how she managed to turn things around.

ormal is what you know. From the day I was born, my older brother had autism. When I was small I used to call him Yah-yah. As a kid, this felt special because it meant a childhood of not having to play by the ‘normal’ rules. When the kids at school learned my older brother had autism, they would ask what it meant. I would try to describe him, and they would innocently ask ‘Why?’ I still don’t have an answer to that one. Yah-yah didn’t play with my brother and me. He liked to make lots of random noises and sounds, jump, rock, stare at one hand or at water, which fascinated him. Until the age of about 13, my mother tried to raise Yah-yah at home. He briefly attended a day school for children with special needs. But he started getting sick and it became clear he was eating playground mud. When we questioned the head teacher she didn’t seem to know anything about it. Back at home, Mum tried hiring childcare but often this made things worse. One woman called Yah-yah a witch; such was autism awareness back then! Accidents and mishaps were part of everyday life. We always had to be careful not to leave doors open because Yah-yah might wander out

into the road or to the park. When trying to raise all three of us became too much, my mum had to look at special residential care for Yahyah. Back then (in the late 70s), the options were limited and my parents put their trust in authority figures whom they thought would know best. Having moved into residential care, Yah-yah became withdrawn. He was heavily medicated (as it turned out, without my parents’ knowledge or consent). He started self-harming and became less engaged than ever. For a while I wondered how my mother could have made such a decision. To choose strangers and institutions over caring for her own son. But as an adult you realise the sad and necessary decisions that were made based on the circumstances at the time. Mum had lost her first son to leukaemia, her second son with autism required 24hour support which made it impossible for her to provide the quality of life she had wanted for her other children. My dad was out working most of the time. Mum had to decide between facilitating a relatively normal life for me and my younger brother Rob and trying to be a full-time carer for Yah-yah. When he was 13, staff at the care home advised that it was ‘not the place’ for Yah-yah, so he was moved

to another institution which my parents were led to believe would offer more appropriate support. However, soon after he arrived there, my parents had to take him back to the original home. They discovered he was kept bedbound, had developed bed sores and stiffness in his joints, lost weight and was self-harming. The whole thing was heartbreaking for them. A few years passed with Yah-yah back in the original home. When he was about 20, my parents managed to get him a place at another care home. At first, the new place seemed like a vast improvement, but the illusion quickly faded. Due to an apparent breakdown in communication between the home and his GP, a problem with Yah-yah’s eyesight was left to deteriorate so that he permanently lost sight in one eye. My parents were devastated. What must Yah-yah have been going through? I encouraged my parents to take legal action, but after various meetings and reviews came to nothing, they understandably felt there was little benefit in pursuing any recourse. Yah-yah remained at this home for the next 20 years and over that time we received endless calls about various incidents. We knew it wasn’t right, but as a family member, you *Names have been changed to protect identity.

Spring 2015

“We knew it wasn’t right, but as a family member, you end up feeling grateful that there is somewhere to ‘care’ for your loved one when you just can’t cope by yourself.”

YOUR AUTISM MAGAZINE

Yah-yah and Rebecca as children

end up feeling grateful that there is somewhere to ‘care’ for your loved one when you just can’t cope by yourself. I’ve learned since that inaction is not the answer and with enough persistence, knowledge and engagement you can bring about positive change. We were told the home needed renovation and that after six months in temporary accommodation, Yahyah would return to a much-improved residence. Two years on, it still wasn’t finished. The temporary living quarters weren’t up to standard and Yah-yah’s injuries and health scares increased. Once, he went missing for a few hours because a gate had been left open. Then, to our surprise, we were told it was unlikely Yah-yah would be able to return to the redeveloped home because of his support needs. I was left confused, upset and very worried for Yah-yah’s future. I just couldn’t understand why we hadn’t been informed sooner. My parents were at their wit’s end and tired, so we agreed that I would become Yah-yah’s legal deputy. I immediately began working to get the funding in place for Yah-yah to be able to return to the renovated home, and, after much persistence, I succeeded. There were many more challenges to come. After some investigation, I discovered Yah-yah had stopped receiving certain benefits because the correct paperwork hadn’t been filled in. Now his legal deputy, I was able to take control; I closed his bank account, opened a new one, set weekly budgets and kept his accounts. Then, Yah-yah had to go to hospital with pneumonia. During his stay, the

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“I hold my breath every time the care provider rings… but when my brother smiles, it melts your heart and everyone else smiles too.”

lack of understanding about his autism among the medical staff became clear. They were scared by his self-harming behaviour – but he just needed comforting. When we went to visit, he was covered in bruises. He was so happy to see us and wanted us to take him home. It was truly sad. Back in the care home, the final straw happened when we came to pick him up for a visit soon after his recovery. He and his room smelt strongly of urine and it was clear that he had not been supported with any personal hygiene for a while. We knew this could not go on. A lengthy complaints procedure followed. Eventually, after a lot of work, Yah-yah moved to a new care provider, and into a brand new development of supported living apartments five minutes from our family home. We were nervous about how he would handle the change, but a transition plan was put in place and staff from the new care provider shadowed the existing staff to learn about Yah-yah’s life. He also went on a number of visits to the new home before the move. When the day came, Yah-yah entered his new room and looked intrigued, calm and happy. He seemed to understand this was his new home. Yah-yah’s challenging behaviour had increased during his transition period and we didn’t know whether it would worsen – but within a few months it had stopped completely.

Share your story

It is two years now since Yah-yah moved to his new care provider and his new flat. He now goes swimming and bowling locally, takes the bus on adventures, uses the gym, enjoys completing jigsaws and has support to go shopping and prepare his meals. He loves being on the swing in the garden which his care provider bought as they knew this was something that helps him manage his anxiety. His care team put thought into supporting him to look good and to be healthy and are always open to exploring new ideas and approaches for his development. There was a time we would never have thought to use public transport with Yah-yah, but we’ve since done several trips, including one to the Hyde Park Christmas Fair (where he pounced on a stack of waffles when my head was turned. The vendor was very gracious about it). My brother has autism. We are all aware that there is no ‘happy ever after’. Even with his new care provider there have been falls. But we try to work together to improve things. I hold my breath every time the care provider rings, and it is sad that my parents still worry about Yah-yah every day. But I also know that when he smiles, it melts your heart and everyone else smiles too. The things that make him happy are truly humbling. Every day is filled with possibilities but you have to choose whether to be a bystander or participant. When others are depending on you, the choice is clearer.●

• Would you like to share your story? 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. • You can download Rebecca’s full story at amzn.to/14dOZ4m. • Share your thoughts at www.facebook.com/YourAutismMagazine.

AUTISM ON FILM • FEATURE

The spectrum through a lens Over the years, there have been various depictions of what it’s like to have autism on the big screen. Reactions to these have been many and mixed, raising questions around whether an inaccurate portrayal is better or worse than nothing at all. We spoke to director Morgan Matthews and actor James Northcote about how their new films X + Y and Muck rose to the challenge of representing characters on the autism spectrum. BY ELEANOR WHEELER

THE DIRECTOR Director Morgan Matthews’ 2007 documentary, Beautiful Young Minds, followed a group of gifted teenagers on their journey to compete at the International Mathematics Olympiad (IMO). This inspired him to create X + Y, a fictional feature film in which teenager, Nathan, trials for the IMO team and finds love at the same time. In X + Y, to what extent is the main character, Nathan, inspired by Daniel, one of the young men with autism in the documentary you made? Although we took a lot of creative licence story-wise, character-wise they are very similar. I know Daniel feels that Nathan’s character is very similar to his. Asa Butterfield, who plays Nathan, met with Daniel quite early on in the production. He was able to explain to Asa why he finds communication difficult. Tell me more about the thinking behind the differences between the ‘fictional’ story and its inspiration. I found the world and the characters I saw while making the documentary wonderful and brilliant – an inspiration for a fictional journey. The great thing about fiction is that you can

Morgan directing Asa Butterfield who plays Nathan in X + Y

make it up and be creative with it. Also, as a director moving into drama and feature films, for me it was important that I was doing that with a subject I knew well. I felt that I was able to represent Daniel’s world faithfully.

Despite being fictional, X + Y will be seen by many as a true depiction of someone with autism. Is that frustrating? If people are comparing it to reality, to me that’s a good thing because I want

“There’s a burden of responsibility there. When you’re making a single film, there are only so many representations that you can cover.” — Morgan Matthews YOUR AUTISM MAGAZINE

FEATURE • AUTISM ON FILM

Daniel Lightwing whose story inspired X + Y with his wife Chan. Daniel and his family advised on the script and production of X + Y.

it to feel authentic. There are two characters with autism in the film but they are very different. I hope that they are realistic representations. I think sometimes the representation of people on the spectrum in film is extreme and clichéd. I knew from my experience making Beautiful Young Minds that the spectrum is very broad and that people may have a diagnosis but it doesn’t mean that they’re the same. For example, there’s an idea that everyone with autism finds it difficult to form relationships. Maybe that’s true on the whole, but Daniel found himself a girlfriend whom he married at 18. Did you consider using actors on the autism spectrum to play the parts of characters with the condition in the film? Yes. We contacted autism-specific schools and drama groups and received some self-taped auditions. From these, we chose a couple of actors to audition. I think for Nathan I’d made the decision to go with Asa quite early on. But for Luke, the other character with autism, one guy got quite close. In the end the decision was based purely on acting ability. The lad who narrowly missed out was an extra for the filming in Cambridge and came to the London premiere. Did you discover any particular challenges arose from using film – a visual medium – to show what it might be like to have a communication disability? It was more about Asa understanding what was going on in Daniel’s

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head to help him convey that experience in quite a subtle way through his performance. It’s certainly challenging from a filmic perspective because Nathan doesn’t really talk much, making it harder for an audience to engage with him.

There’s a burden of responsibility there. When you’re making a single film, there are only so many representations that you can cover. I think if people engage with the subject and are moved by it then that’s the most that I could hope for, really.

Some people might feel the character of a ‘maths genius’ is a misrepresentative stereotype. What would you say to that? I understand that some people may feel it’s a stereotype. I can only say that my experiences in making the documentary told me that there is a disproportionate amount of people with autism in the field of mathematics. I’m aware that this doesn’t represent the entire spectrum at all and I’ve also made films about people with autism who have severe learning disabilities and no communication. Also, I think Nathan is a gifted young mathematician. I’m not sure that he’s a maths genius.

THE ACTOR Up-and-coming actor James Northcote has appeared in The Imitation Game (2014), Nymphomaniac: Vol. I (2013) and Anna Karenina (2012). He plays the character of Billy in Muck, a short film out this year about a Yorkshire farming family in the 1950s who have an adult son with a more complex form of autism.

How do you represent the reality and difficulty of living with a disability in a way that people will find entertaining? My experiences of autism in the real world were often very funny and moving. I don’t really see an issue in translating that into something which is also these things – because real life isn’t always grim. It’s sometimes very difficult but at other times very rewarding. I don’t see the film as a rose-tinted view of life but as an accurate realisation. Has your work on X + Y changed your perception of what autism is and how it can affect people? Talking to you now I’m learning more about the sensitivity around the representation of autism, and how people may feel that a single depiction in film is very important in terms of representing them and their experience.

What is the film about? Muck is a story about a family living with autism which happens to have a very bad day. My character, Billy, is used to living in a wonderful, protected environment in which he feels at home. But one day, for whatever reason, everything just gets on top of his father and because of the situation they’re in, things start to unravel and it ends with unhappy consequences. One of the things that really appealed to me about the film is that it felt like it was not necessarily a ‘standard’ handling of autism. I viewed Billy as an individual character whose autism was just one small part of a very complicated personality. Before you took on the role, did you know much about autism? Nothing specific apart from what I was aware of in the general media. I’d seen Louis Theroux’s Extreme Love: Autism which I think showed something of the diversity of the condition and how it can affect families. Autism is such a complicated and diverse field, so I wanted to do some research in order to feel better prepared to play the role. That’s always such a

“With something that affects so many people in the real world, you feel a real responsibility to try your best to try to understand.” — James Northcote

James Northcote as Billy in Muck difficult thing to do. Particularly with something that affects so many people in the real world, you feel a real responsibility to try your best to try to understand.

were most similar to Billy’s character. It certainly wasn’t a method performance but I did stay in character while I was on set. It was a huge challenge but so exciting.

What research did you do? I spent a day at the NAS Acton Service, shadowing the adults who are supported there. It made me realise that I actually had no idea how complicated a thing autism is and how it affects each individual in a different way. I also watched various films and documentaries about autism. I think in films, autism is often handled quite ‘delicately’. But my research taught me that it can be a very difficult thing to cope with. I felt it was important not to shy away from showing that in the film, even if that was a riskier thing to do. I don’t know if people will feel that it’s representative. As an actor playing a character, the way that you process things in your mind is basically the same as when you’re not acting and being ‘you’. It’s the context that changes. But when you’re trying to represent someone with autism, you have to try to learn to make all of your decisions based on very different processes and that’s incredibly difficult. To do this, I tried to open up the parts of my character that I felt

What was the best thing about playing the character? Billy has such a beautiful character and that is partly bound up in his condition, in that he expresses himself much more directly and he loves and feels much more intensely. In a way that is problematic for him but it also brings joy and constant variety to his mum and dad. To try and step into those shoes was a really magical experience, but also one that made me appreciate more what it must be like to be a family that is affected by autism. Are you hoping that people who don’t know much about autism might see this film and revise their

assumptions as a result? I hope so. I hope that the film brings a certain level of exposure to the challenges of that transition into adulthood, especially. It isn’t an aspect of living with autism that is often represented, what happens when autistic children grow up and become part of society. Muck is set in the 1950s which was much less tolerant than the present day, when autism as a diagnosis didn’t really exist. I hope it will help people see the challenges we still have to overcome as a society and as individuals. Collectively, we really struggle to cope with the nonnormative, whether that’s sexuality, behaviour or anything else. Anyone that is an outlier is seen first of all as a problem and then structures are built to cope with that problem. I think that’s the wrong way to think of it, because diversity is something which enriches our society. ●

Find out more • X + Y comes to UK cinemas on 13 March. Watch the trailer at www.youtube. com/watch?v=tWAS-q2PpnA&safe=active. Muck will be available to view online later this year. Get the latest news at twitter.com/MuckShortFilm. Share your views on the two films at www.facebook.com/yourautismmag or on our community at community.autism.org.uk.

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LIFE AS A CARER • FEATURE

Matt (right) supports Carwyn

Life as

a carer

Across the UK, thousands of people are caring for children and adults on the autism spectrum – both as part of family life and in a professional context. Whether they’ve discovered autism out of choice, or because someone they know and love has the condition, many of these carers’ stories go untold. We asked two professionals and a parent-carer to share their experiences.

MATT WORKS IN RESIDENTIAL CARE FOR ADULTS WITH AUTISM “I’ve been working at NAS Somerset Court for three years. I started as a support worker with limited experience and I’m now a deputy manager. My interest in autism came from my mother, who has worked with the NAS for 14 years. Other than that I don’t have any personal link. I’m not too sure why you wouldn’t want to do this job. Autism is fascinating – the relationships you build are amazing and some of your best experiences will be with people you support. “There is no such thing as an average day. Consistency is key but each person I support has a totally different plan for each day depending on the way they want to live their life, their goals and abilities. They may also have anxieties, sensory sensitivities and different tolerances which have an impact. “The environment can be demanding and I have to deal with challenging situations frequently. Some staff can find this difficult at times, but that’s not what I find hardest. I think the most challenging part of my job is continuously

working within ‘red tape’, cuts to funding, and under low wages. Government policy has always affected the way in which we work. It does feel there are more and more limitations and restrictions to what we do. At times I am ticking boxes rather than getting stuck into the work I really want to be doing. “Reviewing the progress someone has made with your support is the best part of the job. Sometimes you don’t realise the difference you have made until you look back. You become a massive part of people’s lives, as they become a massive part of yours. I can proudly say I have made some lifelong friendships. There’s one individual I have built a great relationship with – our personalities seem to just click. I do still get things wrong and have a lot to learn, but we both have helped each other progress. I would say I have learnt more from him than he has from me. “I work with amazing people, have a great staff team and only ever look forward to going to work no matter how difficult the day may be. In due course I’d like to specialise in behaviour support and sensory integration, helping individuals who are going through crisis.”

“You become a massive part of people’s lives” — Matt

Lynda with her sons when they were toddlers

LYNDA IS A FULL-TIME CARER FOR HER SON, CHARLIE “Charlie has a diagnosis of severe ASD and SLD. I first noticed he was behaving differently to his twin brother when he was two. He was diagnosed a year later. Even though I felt that a diagnosis was inevitable, it felt quite devastating at the time and for a long time afterwards. It took time to make sense of what it really meant. “I had already left my job after the boys were born, as we had moved abroad. When we returned to the UK I had no immediate plans to return to work as I wanted to have time with my children. I feel going back to work would have proven very difficult with all the extra demands of Charlie’s autism. “Instead of pursuing a career I have become a full-time parent-

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Joe has been doing outreach support for the past nine months

“I love it when my role is reduced to that of a bystander” — Joe carer. I have also spent much of my time studying and trying to understand more about autism. Last year I graduated from the University of Birmingham with a Master’s degree in Education, specialising in children and autism. “My typical day is centred on the needs of Charlie. He requires lots of routine, structure and visual support throughout the day. Nothing is spontaneous and I have to plan ahead with anything out of the ordinary and give Charlie plenty of time to process it. Safety is always an issue, which makes it hard to relax. Charlie’s unpredictable sleep patterns and restricted diet can also be hard work to manage. “It is very rewarding to see Charlie progress, in small steps. When he learns to do something or achieves a milestone it is very special. I think that I appreciate it more than most people with typically developing children might. “My hope is that Charlie will be happy, healthy and fulfil his potential. I expect that he’ll need support for the whole of his life, but I hope that he could eventually live away from home with support. Of course I worry about the future. However, I focus on the present and try to help Charlie develop the skills to become more independent and better able to cope with the world around him. “We all cope in our own unique ways, but as a parent-carer I feel you certainly need lots of opportunities to take a break from caring. Having a positive attitude and a sense of humour helps too.”

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JOE IS A SUPPORT WORKER AND SOCIAL GROUP LEADER “I have been volunteering for about two years and have recently become a social group leader. I’m also an outreach support worker, an artist, a committee member of an art gallery, and a carer for my dad. I have five jobs! “I got into volunteering after my father was diagnosed with earlyonset dementia a few years ago. As a carer for my father, I was introduced to support and outreach work by the Alzheimer’s Society. During that period, support workers had such a direct impact on our lives that I wanted to get involved myself. I wanted to help with something different to dementia. I also have a 14-year-old cousin with Asperger syndrome. “An average day at work doesn’t exist! On the outreach programme, I work with three different people each week, all of whom are around my age. This is helpful as it means I’m a peer as well as a member of staff. I do everything from having a chat or going on bike rides to helping with shopping or money management. One of the guys I support is non-verbal and highly dependent on his parents – so working with him demands a completely different set of skills to

working with the other two. Each day is different but it always involves the same emotional investment – listening, thinking, sharing, feeling and being moved by the life of another person. “As a ‘frontline worker’, I don’t know an awful lot about how government policy affects my work. But I do worry about the competitive nature of social care funding structures. The present model of inviting charities and organisations to compete for the provision of support services puts them in competition with one another. They have to sell ‘care package products’, rather than collaborate with each other to get the best of all methods and principles of support work. “The most challenging part of my job is maintaining and enforcing the professional boundaries that separate staff from service user. It’s a delicate balancing act to help each other honestly and openly while also maintaining the necessary professional distance. “The most rewarding part is getting to know someone really well, spending quality time with them and seeing them flourish. I love it when my role is reduced to that of a bystander, when the person I support has grown in confidence enough not to need me any more in a certain situation.” ●

Find out more • Share your story – email YourAutismMag@nas.org.uk or visit our Facebook page at www.facebook.com/YourAutismMag. • Could you be a professional carer? Find out about working for the NAS at www.autism.org.uk/working-with/work-for-us.

INTERVIEW â&#x20AC;˘ Rights and participation

The right to

speak up

As awareness of autism grows, more people are speaking out about how people on the autism spectrum and their families should have meaningful input into decisions which affect their lives. We asked an activist who has autism and an education professional working with children on the spectrum to tell us why they think participation is so important.

BY ELEANOR WHEELER

abie Brook is the chairperson of a collective advocacy, lobbying and campaigning group run by adults with autism in Scotland called Autism Rights Group Highland (ARGH). She aims to change attitudes towards people on the autism spectrum, get their voices heard and to campaign for better services and support. Do you think people with autism are participating more than they used to in the debates and discussion on issues which affect them? Autistic people are definitely participating more. The real question is whether or not this is meaningful to the people involved or the autistic community as a whole. We are often involved poorly, with little understanding about how to manage the process well. This can lead to frustration on both sides and can end counterproductively with miscommunication and loss of trust. Often we are not getting our voices heard and there is a huge disparity

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between what is being said and what is being heard. Tokenism is rife, it can often feel as if autistic people are only included because it is necessary to tick a box, that it is being done for the process rather than any useable or actionable output. What could be done to help and encourage more people with autism to get their voices heard? Many people become frustrated at being consulted but not really listened to. It is common for our views to be ignored because they are inconvenient. The best way to encourage people to become involved is to start listening and acting upon what is being said. There is an unwillingness by many outside of the autistic community to involve those who may be perceived as harder to include. This is not acceptable. Having highly skilled,

truly independent advocates who can enable those who are currently ignored to put forward their views is just not happening at present. There is obviously a role here for peer advocacy â&#x20AC;&#x201C; something Iâ&#x20AC;&#x2122;d like to see resourced and supported. Do you think autistic people both with and without complex needs and learning disabilities should all be able to take part in discussion around rights? If we as an autistic community said that we would only include a certain type of person, or that we wanted rights for this group of autistic people but not that group then we could not legitimately say that we were fighting for autistic rights. No one should be left behind; this is an

Rights and participation • INTERVIEW

Last year, Autism Rights Group Highland and The National Autistic Society Scotland held a conference on autism and ethics. All the speakers were people on the autism spectrum. inclusive struggle. The aim is for equal rights, improved conditions and life chances for all. We want emancipation for all autistic people – no exceptions.

Why aren’t people with autism getting more rights? The autistic rights movement is really in its infancy. Autistic people’s organisations are few and we do not hold senior or influential posts in the organisations that claim to represent and support us. By that I mean the large corporate charities that are still ‘for’ rather than ‘by’ us, although hopefully we are seeing very small changes there. No rights movement has had it easy and we are no different; all minority groups struggle. We need to get better at working across groups, learning from others, and embracing pandisability working. We also need to improve accessibility for people from non-privileged backgrounds. Do you think the general public has enough understanding of autism? Absolutely not. Although we have seen a small improvement from the

days of total unknowing, we’re still seeing a raft of extremely unhelpful and confusing stereotypes. Real improvements will come from more visible autistic people in society, partly through the desegregation of schooling (if done well) and partly through autistic people speaking up and being happy to be identified as autistic. Having said that we still live in an intolerant society and I would never suggest that people should feel any pressure or responsibility to disclose their status if this may harm them.

“It can often feel as if autistic people are only included because it is necessary to tick a box.” — Kabie Brook

In a perfect world, how would autistic people be treated? It is all about equality of opportunity, recognising that we are not all the same. We live in a neurodiverse world and this is the key to our success. Often we are reduced to a dehumanising list of deficits: a problem to be managed rather than real people with lives to live. For me a perfect world would tackle inequality as a whole. We have to recognise and embrace all people. This isn’t about autistic people being better or ‘more equal’. I want to live in a society where people aren’t just tolerated but are celebrated. Craig Goodall is an ASD co-ordinator (and science teacher) in a school for children with social, emotional and behavioural difficulties in Belfast, Northern Ireland. He’s currently researching the educational experiences of young people on the autism spectrum. Why is it important for children and their families to be involved in decisions that affect their education?

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INTERVIEW • RIGHTS AND PARTICIPATION

“Children have a right to information and a right to have their voices recognised in decisions – it leads to empowerment” — Craig Goodall As a teacher working with young people who have had many negative educational and life experiences, too often I see children losing their right to make decisions because of an ill-conceived notion of their lack of competence. Often they have decisions made for them and about them by several professionals, without them (or their families) being truly empowered to engage with the decision-making process. Sadly, I feel that tokenism is rife in many educational and statutory services. Children have a right to information and a right to have their voices recognised in decisions – it leads to empowerment. Parents and teachers can only guess, from our adult lens, what is in the best interests of our children. What do the families you’ve spoken to feel about their ability to participate in these discussions, and exercise their rights? The majority feel that they are constantly battling with education boards and schools for the support their child requires to function at school. Some children lack the basic support they need for difficulties they experience as a result of their autism. Nonetheless, many parents are concerned that their children are not receiving the correct support, which means they are unable to cope with mainstream school and may miss school for long periods of time. Slowly the importance of parental partnership is coming to the fore. Many schools do this exceptionally well, while others do not.

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In your opinion, are families more involved Teacher and ASD than they used to be? Coordinator, Craig Goodall Yes. I feel that parents and children themselves are more aware of their right to be involved in decisions. But work jointly to build relationships with as with anything, sometimes there teachers, schools and other statutory are misunderstandings and the extent bodies. If you are unhappy about to which parents and families get something, inform the school, offer listened to is down to the individual advice and also try out any advice school, teacher or service provider. given by school. Some parents are forming advocacy and lobbying groups. The one I’m What’s your opinion of public involved with focuses on the need understanding of autism? for autism-specific schools with wellI think the general public is definitely trained and compassionate teachers in becoming more aware of autism suitable autism-friendly environments, and old images of the ‘Rain Man’ are for children who are not suited to becoming less obstructive. Strengths mainstream or general SEN schools. and talents of those on the spectrum Balancing what is in the child’s are increasingly celebrated in the best interests for the present against media. In the Northern Ireland Life what might be better for their future and Times Survey in 2012, four out of remains a difficult dilemma for five respondents said they were aware parents. Some feel they have been of autism, and of these, three out of coerced into the position of home five have a family member or know education in order to fulfil the child’s someone affected by autism. ● right to education. What could be done to help and encourage more families of children with autism to feel empowered to get their voices heard? We need to ensure that parents and, more importantly, young people as advocates and agents of change are represented on decision-making bodies. We also need to have concrete connections between the different services in the health, education, and voluntary sectors. Families can also make sure they’re aware of their rights and responsibilities (for example, that they are responsible for their child being educated). It’s important to

Find out more • Find out more about ARGH at www.arghighland.co.uk. • To get involved in campaigning with The National Autistic Society, visit www.autism.org.uk/get-involved/ campaign-for-change. • If you have questions about your child’s rights around education, contact out Education Rights Service on 0808 800 4102. • Download a free self-advocacy toolkit for adults at www.autism.org.uk/ adult-self-advocacy and for children at www.autism.org.uk/this-is-me.

Advice • PREPARING FOR A NEW BABY

How to prepare for a new baby Adjusting to the arrival of a new family member can be challenging, and for an older sibling or other individual on the autism spectrum in the family, this momentous change can be especially hard. Our Earlybird Trainer shares her advice on how best to prepare.

aving a new baby in the family is a wonderful thing. But when you already have a child or older person on the autism spectrum in the family, it may mean thinking a little bit differently about preparing for their arrival.

By Anne-Marie Harrison

Explain concepts clearly The information you provide about the coming changes needs to be clear and realistic, and on an appropriate level of understanding for the individual. Using pictures and resources can be very helpful to support understanding. When deciding what information to provide, consider what someone of a similar age may ‘just know’ about babies, and make sure you are clear about these concepts. For example, explain that the baby will cry and poo, and cause smells, mess and tired, distracted parents. Make it clear that the baby will not be ready to play straight away. The instruction “Sshh, baby is sleeping” will need to be taught. Explain what you want the individual with autism to do as a result of the instruction, for example not to touch the baby or engage in noisy activities while it is asleep.

A new condition called “Because they process the social world social communication in a certain way, someone with autism disorder has been added.

may not readily understand the associated dangers of handling a baby.”

Make roles clear It is important that the individual understands their role and what their involvement will be when the new baby comes along. Consider how best to make it clear for the individual, based on how they prefer to communicate. A visual schedule showing what will happen when you are feeding the baby may be helpful. You could have a ‘big brother/sister’ box of a few favourite items which

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ADVICE • PREPARING FOR A NEW BABY

could come out on the occasions when you need parent-baby time free from distractions. Highlight the dangers Individuals with autism will not necessarily understand or ‘pick up’ on the dangers or risks relating to carrying or handling a new-born baby. If this is their first encounter with a baby and they see other people handling it, they may wish to imitate them. Because they process the social world in a certain way, someone with autism may not readily understand the associated dangers of handling a baby. This is where opportunities for practice and proactive teaching can be helpful. If possible, visit other people with babies and invite them (and their equipment) to your home. Take lots of photographs as these can be very helpful in creating a schedule or preparatory story for the individual in your family. Preparing for sensory needs Think about what you already know about the individual relating to how they interact with their world. For example, will the new smells be something that affects them? If so, prepare a special scarf that has a ‘liked smell’ on it. You can then use this whenever there is likely to be an overwhelming moment. If the sound of a baby’s cry is disturbing then have some headphones, music or activity that helps to distract and calm them down. It is a good idea to introduce

Preparing in advance will help make things easier when the baby arrives these kinds of strategies in advance of the baby’s arrival. Practising for the real thing You will need to prepare the individual for the day the baby actually arrives. Lots of practice of staying with the person likely to care for the individual when the baby comes (a grandparent, for example) beforehand will help. You could use a doll as a babysubstitute to help them prepare for having a real baby around. However, remember that having autism may mean they don’t have the flexibility to understand that there is a difference between handling a doll and a real baby – so be careful not to cause confusion. If you are considering using some role play with a doll, treat it as if it is a real baby. This can support the individual’s understanding of what we mean when we say things like ‘Gently!’●

“It is important that the individual understands their role and what their involvement will be when the new baby comes along.”

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Find out more For infomation about NAS Earlybird training for parents, visit www. autism.org.uk/ earlybird. Share your experiences Do you have any advice on what worked for you when preparing for a new baby? Share it on Facebook: www. facebook.com/ YourAutismMagazine.

ADVICE • adhd

Understanding Attention Deficit Hyperactivity Disorder (ADHD) ADHD is common in people with autism. If someone has ADHD, they have significant difficulties with things like poor attention, over-activity and impulsiveness. We asked experts from The South London and Maudsley Hospital to explain how ADHD can affect children and adults, and the options for treatment. B y D r A n a s ta s i o s G a l a n o p o u l o s a n d t e a m

DHD can cause difficulties at school, work or home – but it is treatable. If you have autism and think that you may also have ADHD, it’s important to have an assessment with a specialist doctor who is familiar with both conditions. They will then be able to discuss your assessment and the treatment options. What are the symptoms of ADHD? There are three main types of ADHD; Combined (both inattentive and hyperactive-impulsive), predominantly Inattentive and predominantly Hyperactive-Impulsive. Inattention includes things like: • lack of attention to detail, making careless mistakes • difficulty sustaining attention (eg in class or at work) • not listening when spoken to directly • having trouble completing jobs and tasks • having problems organising tasks

• avoiding or disliking sustained mental effort (eg filling out forms) • losing things • being easily distracted • being forgetful in daily activities. Hyperactivity includes things like: • being fidgety (hands or feet) or squirming in seat • leaving seat when not supposed to • being inappropriately restless or overactive • having difficulty engaging in leisure activities quietly • always being “on the go” • talking excessively. Impulsivity includes things like: • blurting out answers before the person’s finished asking the question • having difficulty waiting in line or with taking turns • interrupting others. Although we all may do some of these things from time to time, the key thing for ADHD is that in order to reach

diagnostic criteria: • you do a lot of them • they occur across your everyday life • the symptoms are out of keeping with your developmental level (eg not behaviours that you’d expect from a 10 year old or a 45 year old) • some symptoms that cause difficulties must have been present before 12 years of age (ie they don’t just start in your 30s) • the symptoms cause problems in two or more everyday settings • there is significant impairment in social, school or work functioning because of these difficulties. It can be difficult for some people

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Advice • adhd

with autism to describe symptoms that they may be experiencing, so it can be helpful to think of how you may behave or react to routine things in your everyday life. Some examples of behaviours that can be associated with ADHD include: • disorganisation (not planning ahead) • forgetfulness (missing appointments, losing things) • procrastination (starting projects but not completing them) • time management problems (always being late) • premature shifting of activities (starting something but quickly getting distracted by something else) • impulsive decisions (especially around spending, taking on projects, travelling, jobs or social plans) • criminal offences (speeding, road traffic accidents, illegal drugs) • unstable jobs and relationships. Does ADHD only happen in childhood? ADHD used to be thought of as something that happened just in childhood. However, it is now recognised that ADHD can persist to adulthood for many people and can cause adults significant difficulties (eg having to repeat a year at college despite academic ability, difficulty in retaining jobs, difficulty in organising household jobs like bills, payments, shopping and road traffic accidents) if not treated. How is ADHD treated? Treatment for ADHD includes both medication and psychological strategies. The National Institute for

Health and Care Excellence (NICE) recommends that the first steps in treatment for ADHD for young people include help with behaviour and stress management and educational support and that children under school age should not be given medication for ADHD. For adults with ADHD, NICE recommends that medication is the first-line of treatment, unless the person would prefer psychological treatment. Medication Medication for ADHD in the UK often includes stimulant medication, such as methylphenidate or a tablet called atomoxetine. Methylphenidate is licensed for use in the UK as part of a comprehensive treatment programme for ADHD, under the supervision of a doctor who specialises in ADHD. Methylphenidate starts to work 30-45 minutes after you’ve taken it, so you and your family and doctor may want to think about when’s best to take it – for example, perhaps just before you leave the house for school or work, so you get maximum benefit once you arrive. Methylphenidate comes in two different formats, immediate and modified release, which allows people some flexibility and choice in how they prefer to take it. Immediate-release tablets (Ritalin and Equasym) work for up to four hours and so are usually taken two or three times a day. Modified-release methylphenidate, such as Concerta or Equasym, works for up to eight hours and so can be taken just once a day. Atomoxetine is another type of medication for ADHD and is licensed

ADHD can affect children, teenagers and adults

in the UK for the treatment of ADHD in children six years and older, again under specialist supervision. Like with any medication, the pros and cons should be carefully discussed with your doctor before you start them. Also, your doctor will want to check your physical health and monitor your blood pressure. If you’ve taken methylphenidate for a month and it hasn’t helped, it should be stopped. People with autism can be vulnerable to the side effects of medication and so we would recommend that you start with a low Researchers use fMRI scans to see how brain activity is different for people with ADHD

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ADHD can make organising household jobs, like paying bills, more difficult dose and if you need to increase the dose, you and your doctor plan to do this slowly over time. Specialised therapy Cognitive behavioural therapy (CBT) can be helpful for ADHD. CBT can also be helpful for things like anxiety and low mood. However, we would recommend that if you have CBT for ADHD, you receive specialised CBT that is specifically adapted for people with both autism and ADHD and is provided by professionals who are experts in both conditions. Information about autism and ADHD (psychoeducation) and social skills work can also be helpful for people with autism and ADHD. Your psychologist or doctor may also suggest some things that might help at work or at school, like setting reminders about homework or jobs on your phone or using a diary (online

or paper) to plan your homework or household jobs. Moving from child to adult services There are very few specialised mental health services for adults with both autism and ADHD in the UK. As such, some people may not have had an assessment of autism or ADHD until late in their adult life, or have difficulty in accessing treatment. Also some young people with autism and ADHD may have no local adult mental health team to transition to when they leave the care of their

paediatrician or child and adolescent mental health service (CAMHS). If you have no local adult autism or ADHD service, or you are transitioning from child to adult health care, ask your GP, paediatrician or CAMHS team to refer you to a specialised adult autism and ADHD mental health team. It’s helpful if your young person’s team can plan your transition with you before you leave their service, so your care is planned and you, your child and adult teams and GP are clear about how you can access care as an adult. ●

Useful websites and resources • The National Autistic Society: www.autism.org.uk/ADHD. • The National Attention Deﬁcit Disorder Information and Support Service (ADDISS). www.addiss.co.uk, email info@addiss.co.uk or call: 020 8952 2800. • Young Minds: www.youngminds.org.uk.

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Student Support Services

Rosalyn (second from left) with some of the students she’s supported

How the NAS can help you Rosalyn Lord runs our Student Support Services in the North of England. A parent herself, her own experiences have helped her develop the service, which is one of several across the UK. Rosalyn tells us about how the service can help.

hat is the service and what support do you offer to whom? Our Student Support Services help students with autism at a growing number of universities across the UK. In the North of England we currently support over 100 students at universities like Lancaster, Bradford, Bolton, Sunderland, Liverpool and at many further education centres. We offer one-to-one specialist mentoring support sessions in which we help students deal with the challenges of higher or further education, including time management, communication, organisation, social issues and sensory issues. We also have a more practical role in supporting students into and out of classes and lectures, helping students to focus, make notes, connect with tutors, deal with peers and group work, use the library and other things. How long have you been working for the service? I have worked at the NAS for the past 12 years and I began the service in

2008. My son, who was diagnosed with autism at the age of two and was non-verbal until he was five, attended the University of Bolton. I had to make it work and it did. The service grew from there. What are the questions you hear most often? People often ask questions around which course or university they or their child should choose, and whether or not they should stay home or move into halls of residence – these are difficult questions and choices. Do you have an example of someone

“We have been privileged to see many of the students we support not only graduate, but develop their talents and skills and become successful.”

who’s really benefited from using the service? We have been privileged to see many of the students we support not only graduate, but develop their talents and skills and become successful. We are waiting to see how the students use their degrees and experiences in future, but the process of getting a degree itself has been of huge benefit to many of them in so many ways. How do you access the service? The service is funded through Disabled Students’ Allowances. To access it you’ll need to provide evidence of diagnosis and the impact autism has on communication, social interaction, and then how learning may be affected. Student Finance approves an assessment which, if accepted, releases the funding for support and equipment. To contact Student Support in the North of England, email rosalyn.lord@nas.org.uk or call 07770 227 085. Find out more about the Student Support we offer across the UK, go to www.autism.org.uk/ studentsupportservices.

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 the NAS continue its work.

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RESOURCES

Chasing Shadows WRITER: Rob Williams DIRECTORS: Christopher Menaul and Jim O’Hanlon Available now on DVD. VERDICT: Some good characterization but ultimately unsatisfactory.

Reviewed by former NAS Participation Support Officer, Leo Capella, who has autism.

I LIKE GOOD detective dramas on TV (including on ITV), I really do. However some top-quality dramas seem to hit a threshold with a subject and then fear to tread any further – most recently Chasing Shadows. There are some things to like about DS Stone (Reece Shearsmith). He gets the mannerisms right, including an all-too-familiar abruptness. He has a blunt sense of justice and shows empathy (which is a trait not commonly shown in portrayals of people on the spectrum). However, he also comes across as someone who tends to collide with his superiors – so that I wondered how in the universe he had been made a detective sergeant let alone a constable. You see, to get to his position in real life, the DS would have had to learn survival or compensatory techniques such as tact. These aren’t shown.

Instead, he ignores his e-mail and doesn’t go to key meetings because he’s not interested. As a result you get a character in a job who’s missing the skills he would have needed to get there – which is unconvincing. Furthermore there’s no attempt to explore why DS Stone is the way that he is. Instead his behaviour is taken as a given, which although well-intentioned is an increasingly lazy way of viewing autism or any other condition. There has been a steady stream of people with autism as detectives such as Saga Noren in The Bridge. However as Mark Lawson recently pointed out in The Guardian, ‘autism isn’t a dramatic quirk’. People with autism are scientists, teachers and cleaners amongst other jobs. The question is, who is going to bring those stories from the depths to the surface?

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

Our six favourite… Museums

NATIONAL MUSEUM WALES Covering everything from Welsh cultural history to wool and slate, there’s lots to discover across the nine museums of National Museum Wales. We’ve provided advice on how to be autism-friendly to supervisors at each one. www.museumwales.ac.uk

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SCIENCE MUSEUM, LONDON On particular Saturdays throughout the year, the Science Museum runs free early bird sessions for families affected by autism. You can explore the exhibits and do workshops free from the usual crowds. www.sciencemuseum.org.uk/ earlybirds

ULSTER MUSEUM, BELFAST Ulster Museum hosts learning programmes which are free and adaptable for people with learning disabilities. The exhibitions feature dinosaurs, arts, archaeology, local history and science. www.nmni.com/um

RESOURCES

A Practical Guide to Mental Health Problems in Children with Autistic Spectrum Disorder AUTHOR: Khalid Karim, Alvina Ali and Michelle O’Reilly PUBLISHER: Jessica Kingsley Publishers PRICE: £19.99 VERDICT: A useful aid to applied work.

THIS BOOK IS A WELL-PACED and informative guide for professionals. It addresses the knowledge gap between understanding autism and its relationship to mental health problems. Written by two consultant psychiatrists and one senior lecturer (all with family experience of autism), the book covers the main areas of mental health, and how problems might affect the way in which you would support children or young people with autism. It would have been interesting to see more information about useful assessment measures and neurobiology. In addition, more case examples of how to adapt CBT or mindfulness, for instance, would have been thought- provoking. Reviewed by Joanne Yeoman, Specialist Senior Educational Psychologist

ROYAL AIR FORCE (RAF) MUSEUM, LONDON The venue for our AGM in November, the RAF Museum was the UK’s first cultural venue to win an Autism Access Award. It has free entry and over 100 planes on show. www.rafmuseum.org.uk/london

EAST ANGLIAN RAILWAY MUSEUM, ESSEX For all Thomas the Tank Engine fans, this museum puts on special days with unlimited rides on character trains. The Fat Controller also does storytelling and re-enactments throughout the day. www.earm.co.uk/events/santa

Giveaway The winner of last quarter’s competition to win a set of Step Outside Guides is Mrs Lesley Hill from Warwickshire. Congratulations, Lesley! For a chance to win a selection of advice books from the NAS, email yourautismmag@nas. org.uk with your name and contact information by 6 March.

THE RIVERSIDE MUSEUM, GLASGOW The 3,000 objects at the Riverside Museum detail Glasgow’s rich history. These include a tall ship nearby which you can explore, trams and a bus. www.glasgowlife.org.uk/ museums/riverside

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JO REDMAN

I’m a kickboxing champion! World champion kickboxer, Jo Redman, is passionate about her sport. Having achieved remarkable success internationally, she remains honest about the difficulties she’s faced with her mental health.

O REDMAN is a kickboxer with autism and attention deficit hyperactivity disorder (ADHD). Having first kickboxed for England at the age of 17, she has won the World Championship three times. As a child, Jo wasn’t too keen on activities. “There was nothing I thought I could do. I remember crying when my mum took me to dancing classes and I didn’t enjoy Girls’ Brigade at all,” she says. Then Jo’s dad took her to kickboxing at the age of 13. “I decided then and there I would fight for England and get my black belt. From then on, I basically lived and breathed kickboxing,” Jo says. After years of training, Jo first fought for England at the age of 17. She won three consecutive World Championships between 2011 and 2013. Jo wasn’t diagnosed with autism until she was 23 years old. “I had been involved with mental health services for years, and I didn’t know what was ‘wrong’ with me,” says Jo. She needed to have a crisis intervention, and mental health services referred her for an assessment for autism. Although getting a diagnosis was a relief for Jo, it also raised doubts. “I realised I experienced things differently and that was okay,” says Jo. “But I also thought: how could it be real if I wasn’t diagnosed until so late? I sometimes felt like a fraud – but I don’t feel this way anymore,” she says. Does Jo think her autism aids her kickboxing

skills? “In kickboxing, you have to be very aware and reactive in fighting. The autism side is the repetition of techniques, in analysing where you go wrong and improving yourself. If I didn’t have autism I wouldn’t have been successful,” says Jo. Although Jo has experienced international success, kickboxing and life can still be a struggle. Jo has depression and severe anxiety, and she’s open about how that interferes with her sport. “As an athlete you are judged on your competitive performance, but when you have autism there are extra challenges. I declare I’m giving up my sport many times in the course of training, and I have meltdowns and refuse to go – all those things you don’t see. You don’t see me struggling to answer my phone, write an email, or struggling to understand and cope with life,” she says. But Jo is still keen to be a role model. “I do my best to give what I can to others and to encourage and motivate people,” she says. “A little bit of my time to help others is worth it.” As testament to her desire to give, Jo’s proudest achievement in kickboxing isn’t her championship wins. “Some of the girls in my team told me I was their inspiration and that they couldn’t achieved what they’ve done without my support. More than the World Championships, that is my proudest achievement.” ●

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

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