Your Autism Magazine Issue Autumn 2014 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 48 – NO 3 • AUTUMN 2014

IT TAKES TWO

Finding love for Joe and James

‘Think Autism’ in reality

Norman Lamb MP answers your questions

ROUTES TO EMPLOYMENT How work schemes can change lives

Temple Grandin, autism superstar

On bullying, special interests and success

ALSO IN THIS ISSUE:

WHAT IS PREVERBALISM? I’M A RACING DRIVER! HOW TO MANAGE A TRANSITION

Autumn 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

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 © Rosalie Winard www.rosaliewinard.com The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine 2014 Autumn Vol 48, No 3 The National Autistic Society ISSN 2055-0413 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of the 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 autumn edition of Your Autism Magazine. As the summer draws to a close and new beginnings are just around the corner, we look at making the transition into work. We spoke to Nathan and Shaun, who are doing supported internship programmes, their parents and the professionals supporting them, about their experiences, as well as author Randy Lewis who revolutionised the employment of people with disabilities in the US. In addition, our Transitions Support Service provides some step-by-step advice on moving into adulthood, and Temple Grandin shares her thoughts on the importance of developing a passion as a step towards work. I also caught up with Minister for Care and Support, Norman Lamb to ask him your questions about Think Autism, the new Government strategy for adults with autism in England. As ever, please get in touch if you have any ideas you’d like to share.

14 Contents 04 News 10 Research in focus 13 Readers to the rescue 14 How do I... manage a transition to adulthood? 16 Feature: My story 21 Feature: Working it out 26 Feature: Temple Grandin 28 Interview: Norman Lamb MP 33 Advice: Autism as a clinical priority 37 Advice: Preverbalism 41 Spotlight on support: Autism and Ageing Advice Service 44 Resources 46 I’m... a racing driver

Eleanor Wheeler EDITOR

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News

A round-up of the stories that affect you The Careless campaign was launched in June

Careless campaign targets gaps in social care eligibility This summer, we launched a new campaign in England. Careless aims to challenge the Government to better protect vulnerable adults with autism from abuse, neglect and loneliness. The Government recently released draft guidance for local authorities to decide who will be eligible for social care across England, as part of their Care Act. However, we believe these new measures fail to adequately recognise the basic needs of many adults with autism, such as staying safe, building relationships or being verbally prompted to carry

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out tasks. Under the proposed system there is a risk that many adults with autism who need this support will not qualify for it, which could leave them unfed, unwashed and afraid to leave the house. Careless aims to make sure that the needs of adults with autism are recognised by the system so that they qualify for the support they need. We will be using the power of MPs to influence the proposed changes when Parliament returns in September. Visit www.autism.org.uk/careless to learn more about how you can support the campaign.

SCOTTISH BRANCH OFFICER WINS AWARD Gail McKeitch, a volunteer at the NAS branch in Ellen, Aberdeenshire, won the Charity Champion award at the 2014 SCVO Scottish Charity Awards. “Gail is a one off for sure. She lives and breathes autism and works tirelessly to help all around her”, said the treasurer of the Ellon branch, Shona Fraser. Gail, a mother of two sons with autism, has provided support to more than one hundred families in Ellon, organised fundraising events and biannual autism-specific conferences, raised over £15,000 with annual quiz nights, and in her spare time studied for a post-graduate certificate and diploma in autism studies. First Minister of Scotland, Alex Salmond, wrote to Gail to congratulate her on her nomination, praising her “significant work ... undertaken across the north east to raise awareness and funds for autism”. Star NAS volunteer, Gail McKeitch

AUTUMN 2014 • NEWS

News in brief New books available now

Mother, researcher, clinician, pioneer. Dr Lorna Wing will be greatly missed.

DR LORNA WING OBE 1928-2014 Dr Lorna Wing’s groundbreaking

work transformed how autism is understood across the world and played a huge part in making our charity what it is today. We owe her an enormous debt of gratitude. Her incredible intellect, compassion and insight helped to transform our understanding of the lifelong condition which affects more than one in a hundred people in the UK. She developed the concept of autism as a spectrum condition in the 1970s, and later coined the term Asperger syndrome. Along with Judith Gould, she opened the first complete diagnostic, assessment

and advice centre in the country. As a researcher and clinician, as well as mother to a child with autism, she always advocated for better understanding and services for people with autism and their families. To sign the online remembrance book for Dr Lorna Wing, visit www.theonlinebookcompany. com/lornawing. The AGM this year will be followed by a memorial event for Dr Wing. Attendance will be free and available to members.

NATIONAL THEATRE TO RUN RELAXED PERFORMANCE OF WAR HORSE On Saturday 20 September 2014, the National Theatre will hold a relaxed performance of Michael Morpurgo’s War Horse in association with the NAS at the New London Theatre. Volunteers will be on hand during the day to help attendees enjoy the show, which begins at 2pm. Tickets are £25. To book, call the box office on 020 7542 3000.

Visit our online shop to find the latest titles published by the NAS. Out this summer, the new editions of Autism in the Primary Classroom and Autism in the Secondary Classroom are aimed at teachers in mainstream schools to help them to develop inclusive strategies. Visit www.autism.org.uk/shop.

Ride for autism! There’s still time to sign up for our very first Ride for autism on 31 August. The 85-mile cycle route will start in the historic city of Cambridge and traverse to the seaside on the Suffolk coast, with a mid-morning snack stop at one of our adult services. To register, visit www.autism.org.uk/ rideforautism.

New Welsh branch launched A new Merthyr Tydfil Branch of The National Autistic Society Cymru was launched in April to support local families affected by autism. The new branch, formerly the Tydfil Autism Support Group, will provide information and support as well as workshops, family day trips, coffee mornings and parental training sessions and support. Contact the branch at Merthyr.tydfil@nas.org.uk.

Are you planning a wedding, birthday, anniversary or other special occasion? Would you consider using your day to raise money to help people with autism? For ideas and information, and to order our celebrations or wedding packs, email fundraising@nas.org.uk. YOUR AUTISM MAGAZINE

NEWS • AUTUMN 2014

A few of Ava’s designs

Changes to the welfare system will mean re-applying for access to the scheme

Motability access set to change following welfare reforms CARDS BY A YOUNG ARTIST WITH AUTISM GO ON SALE A seven-year-old girl with autism has created drawings that have been made into sets of cards to be sold online. Ava Marsh had delayed speech and began drawing at the age of three. Her artistic talents caught the eye of her teacher, Rebecca, who commented: “I felt an immediate affinity to Ava’s work, I felt as if I was looking at an artist’s vision of how they view the world. Ava has developed a style which is unmistakably a form of expression.” The initiative is supporting our charity by donating 10% of the proceeds from card sales to the NAS. Thank you, Ava! Visit www.avamarshart.com to buy Ava’s cards. A happy scene from last year’s ceremony

Changes to welfare payments mean people using the Motability scheme to access a hire car will need to be re-assessed to continue to have access. Personal Independence Payment (PIP) is replacing Disability Living Allowance (DLA) for people aged between 16 and 64. The Motability scheme will continue under the new system, but there are some changes to how you will be able to access it in England, Wales and Scotland. Under the DLA system, you had to be awarded ‘high rate’ mobility in order to access the Motability scheme. Like DLA, PIP has two components: a ‘daily living’ component and a ‘mobility’ component. Each component has two rates of payment: a ‘standard’ rate and an ‘enhanced’ rate. Under this new system, you can lease

a Motability car by using the ‘enhanced rate’ of the ‘mobility’ component of PIP. However, the eligibility criteria for PIP is different. So, if you are an existing DLA recipient you will not be automatically transferred across to PIP. You will need to make a new claim when the Department for Work and Pensions (DWP) invites you to do so at some point in the next four years. The DWP will then assess your claim and decide what level of PIP benefit you should receive. If you disagree with a decision, you will be able to appeal. To download the Motability transition support pack visit www.motability.co.uk/pip or to find out more, email our Welfare Rights Service on welfare.rights@ nas.org.uk.

TUC LAUNCHES THEIR FIRST EVER GUIDE TO AUTISM IN THE WORKPLACE The Trade Unions Congress (TUC) has launched its first ever guide to autism. Autism in the workplace aims to inform union reps and workers of the facts about autism and provide advice on how to support staff to ensure they get the adjustments they may need – and are legally entitled to. “All too often, people with autism can face challenges and obstacles at work due to ignorance and prejudice around their condition. Our new workplace guidance gives union reps and employees the information they need to support work colleagues with autism and make plans for any potential problems before they arise”, said TUC General Secretary Frances O’Grady. Download the guide at www.tuc.org.uk/sites/default/files/Autism.pdf.

Can you think of an individual, team or organisation who has helped you or a loved one with autism, or even changed your life? Entries for the third edition of the Autism Professionals Awards are now open. To make your nomination, visit www.autismprofessionalsawards.org.uk.

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MEETING THE NEEDS OF DIVERSE COMMUNITIES A new NAS report on how autism affects families from Black, Asian and Minority Ethnic (BAME) communities was launched to Parliament in July. It followed a series of focus groups held across England. As in previous research, families affected by autism said they struggle to get a diagnosis, access the services they need and integrate their child with their local community. The NAS is calling on local authorities and Clinical Commissioning Groups to identify the needs of local

BAME populations and respond with appropriate services, and to monitor their effectiveness. To read the report, visit www. autism.org.uk/BAME2014.

If you’re an adventure-seeker looking for a once in a lifetime fundraising challenge, why not join an amazing 12-day trip taking place in spring 2015 in the Indian Himalayas? To find out more or to sign up, visit www. autism.org.uk/himilayas-trek.

NEW AUTISM PASSPORT FOR HOSPITALS LAUNCHED Earlier this summer, a new hospital passport was launched to support health professionals to better understand the needs of people with autism in hospitals across the UK. The project is being led by NAS Vice President Baroness Angela Browning, with support from the NAS, the Department of Health and a generous donation of pro bono support from BT. The short booklet is designed to accompany the general notes that medical professionals refer to when treating a patient. It contains

essential and useful information about the needs, likes and dislikes of a patient with autism, to make their stay more comfortable and reduce the risk of distress or misunderstanding. Download the passport at www.autism. org.uk/hospital-passport.

NAS FUNDRAISER PLANNED BY AND FOR PEOPLE WITH AUTISM AutismCon: Festival of the Mind will celebrate the diversity of everyone on the spectrum, while also raising money. A team of ten people with autism are busy creating an exciting programme to include an array of activities and talks – from debates on disability rights to Dungeons and Dragons marathons – all on one day! To get priority bookings to this event, email Eleanor.Badcock@nas.org.uk. CHRISTMAS CARD COMPETITION WINNERS ANNOUNCED We are delighted to announce the winners of our 2014 Design a Christmas Card competition. Joely Williams’ ‘The Winter Snow Flake’ won the adult category while eight-year-old Patrick Craig’s ‘Reindeer with a cold nose’ won the children’s competition. Both designs are available to purchase at www.autism.org.uk/shop. LAST YEAR alone, The National Autistic Society sold a total of £132,000 worth of Christmas cards. It is with great regret that we pass on the sad news that Betty Dobson, who founded and ran Autistic Christmas Cards for many years, has died. She raised thousands of pounds of much-needed funds, and was a committee member at the time of the original pioneers who formed our charity. Her husband, Geoffrey Dobson, was the Society’s second chairman from 1969 to 1976.

YOUR AUTISM MAGAZINE

Research in focus Bringing you news of the latest research into living and working with autism © Alamy

Spatial navigation skills and autism Sophie Lind is running a research project on autism and spatial navigation (the ability to find one’s way around an environment) at the Autism Research Centre at City University, London. She aims to find out if spatial navigation is a strength or a weakness for people with autism.

Participants in the research had to find their way around a computerised island

Spatial navigation is a key skill that

people use in their day-to-day lives. Effective navigation prevents us from getting lost and helps us, for instance, to choose the best route into work. This project is focused on people’s ability to learn the layout of an environment through first-hand experience and create a ‘cognitive/ mental map’ in their imagination that can be used to help them navigate. Research with neurotypical

people has shown that the ability to create cognitive maps relies on a similar set of brain areas to those involved in episodic memory (the ability to recall past personal experiences), episodic future thinking (the ability to imagine possible future experiences), and theory of mind (the ability to appreciate what another person is thinking). People with autism have difficulties with these areas, suggesting they may have difficulties with spatial navigation.

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On the other hand, the ‘extreme male

brain theory’, put forward by BaronCohen, suggests that spatial navigation should be a strength for people with autism. The theory claims that cognitive abilities (including spatial navigation) that involve ‘systemising’ (the drive to analyse or construct systems), which are generally strengths of males relative to females, should be superior among people with autism. The research team asked intellectually able adults with autism and neurotypical adults to find their way around a computerised island. First, participants were asked to move towards a series of flags on the island. These flags marked the locations of several ‘mysterious objects’. This gave participants the chance to learn the layout of the island and the locations of the objects – ie to create their own cognitive maps of the

island. Participants were then asked to find their way back to one of the objects, but this time without the help of the flag to mark its location. Participants with autism had no difficulty with the first part of the task, but they had considerable difficulty with the second. They showed a greater tendency to search for the object in the wrong areas and to take longer, less efficient routes, relative to neurotypical participants. This suggests they had difficulties creating a cognitive map of the island. In future research, the team hopes to establish whether there are ways to help people with autism navigate more effectively in everyday life. ● The full report of this research can be accessed free of charge at psycnet. apa.org/journals/abn/122/4/1189/.

research • Focus

Hate crime affects one third of people with autism A third of all adults with learning disabilities and autism have suffered some form of disability-related hate incident, according to new research by the Tizard Centre, MCCH and Autism London Kent Police.

Living in Fear, a research project based in Kent, found that a third of people with disabilities said they have been attacked and victimised, while others suffered verbal abuse, damage to their property and name calling. For some, the situation had become so bad that they were forced to move or make significant changes in their lives. “The impact of these types of hate crime can be severe and long-lasting.

Indeed, the most common response for people suffering victimisation is to change their lives to try and avoid further incidents. There is now a clear need for the Government to refresh its hate crime action plan to reflect the study’s findings”, said Dr Julie Beadle-Brown, Reader in Intellectual and Developmental Disabilities at the Tizard Centre, and leader of the research team. A pilot project in Medway, supported by Medway Council and Kent Police, will now aim to reduce harassment and victimisation through enabling people with disabilities, including social and communication disabilities, to report crimes, and training officers to identify and support people with learning disabilities and autism.

The impact of hate crime can severely affect a person’s life

A fear of shopping was one of the phobias the researchers looked at

Children with autism overcome real-life fears in virtual world In a study published this summer in PLOS ONE, a scientific journal, experts at Newcastle University describe how, following treatment in a 3D virtual reality room, eight out of nine children were able to tackle the situation they feared. This shows how virtual reality can help children with autism overcome their fears and phobias. Four children were found to have completely overcome their phobias and the effect was still in place six months later. Dr Parr from Newcastle University’s Institute of Neuroscience, said: “Parents told us that they could see the difference in their children over the course of the four session programme – their children are now much better at coping with the situations that they once found distressing. Six months later, the children are still able to cope.”

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

0808 800 8104

Sensory sensitivities can make trying new foods very difficult

WHAT APPROACHES and tactics do parents of children with taste sensitivities around eating adopt to get their children to try new foods? — Gina WE DISCOVERED THAT our daughter’s response to food was primarily visual. If she doesn’t like the look of something, she won’t eat it. Blind taste tests revealed that she likes more foods than she thinks she does. If she’s trying something new, we ask her to close her eyes before putting it in her mouth. She will now eat about 50% of the new things she tries. — Lou

BOTH MY AUTISTIC SON and his brother had very limited diets growing up. I was concerned because what they ate did not conform to what we are told is a healthy diet. One son was a vegetarian who refused all fruit and vegetables except tomato sauce (as in pizza and pasta) and apple juice. They were both physically healthy and achieving well at school, and the results of blood tests revealed no vitamin deficiencies – so I stopped trying to get them to eat foods they

found aversive. In their late teens both of them expanded the range of foods they were willing to eat and they now eat normal diets. My own experience as an autistic child growing up with taste sensitivities being forced to finish what was on my plate resulted in me regularly retching over the sink. Like my sons I loathed vegetables, now, as a vegetarian, I eat lots of them (within recipes, rather than plain boiled). So, my experience is that my own and my children’s food sensibilities were best accommodated, and mostly grown out of. — Caroline Don’t give up on offering new food – having autism may just mean it takes longer to try something new. Keep foods separated on the plate to start with and never force or over-encourage a child to eat a new food. For any drinks or wet food, always use the method of gradual swapping from old to new, where possible. — Fay

Help me next!

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

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.

YOUR AUTISM MAGAZINE

Manage a How transition do I? to adulthood? Making the transition from school to adulthood can be tough for anyone, but it is particularly difficult for people with autism. Our Transition Support Service Coordinator provides some top tips for how to make a transition more manageable. BY EMMA STORRIE

FORWARD PLAN

Start transition planning as far in advance as possible and work towards increasing skills, independence, goals and aspirations. Transition planning should start in Year Nine for young people with Special Educational Needs in England and Wales and Year Ten in Northern Ireland and continue through to the age of 25. In Scotland, where the law is very different, transition planning should begin at least one year before the young person is due to leave school. Although a young person or their parent or carer may not know exactly what they might want to do after school, such as move into further education, into employment, or into a supported living environment, it’s important to start thinking ahead, getting used to the idea of change in the future and exploring options. The earlier transition planning starts, the more likely it will be that the young person’s current and future necessary support will be put in place, and that transitions will be smooth and successful.

KNOW YOUR RIGHTS AND ENTITLEMENTS

Get clued up about the relevant rights and entitlements across education, community care, housing, leisure and social care within the transitions process. All young people with SEN or a learning difficulty in England, Wales and Northern Ireland should have a transition plan which is reviewed annually, and copies must be given to the young person and their parent or carer. The law in Scotland is less prescriptive but there are still steps that schools and others must take to try and ensure a successful transition for young people with additional support needs. Knowing your rights and entitlements will mean you are better able to request required support. Be prepared to challenge your local authority or education and library board for support. Although young people may not get everything they need at first, many do after further negotiation so it is worth the effort.

PUT THE PERSON WITH AUTISM AT THE CENTRE OF THE PLAN Person-centred planning is key to finding out what a young person wants to do now and in the future and exploring options around skills, strengths, interests, challenges and support needs. For instance, this could apply to planning the move out of a parent’s home. Some young people may be able to communicate their interests, needs and aspirations more than others. For young people with communication difficulties, every effort should be made to help them to understand transition planning and to get their input. This could mean using the Picture Exchange Communication System or Social StoriesTM. Motivating and encouraging them to explore change and helping them to learn strategies and approaches to cope with change may be needed and can often help people with autism throughout their transitions. Any decisions made on the young person’s behalf should always be in their best interests.

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GET EVERYBODY INVOLVED

It’s important to involve a young person with autism, their parents or carers, their teachers, SENCOs, head teachers, social workers, and if relevant their health workers in transition planning. Unfortunately, some professionals may not get involved unless you actively bring them in, so be demanding if you need to be to help explore the young person’s skills, strengths, interests, challenges and support needs. Also, don’t be afraid to ask other professionals and agencies to share information with each other. Sharing information is essential so that each area can work in a joined-up way to help to make all components of the young person’s transition and future transitions as smooth and successful as possible.

HOW DO I? • FEATURE

VISITS, INTRODUCTIONS AND MOVING ON

Once a transition has been confirmed, plan several occasions for the young person to meet new staff, students, residents and become familiarised with settings as far in advance as is suitable. This will encourage the young person to get to know the new environment and is likely to make the transition easier. Saying goodbye to current staff, students, and settings is also important, so make sure you plan in the time for this if suitable. Gradually reducing time in current settings and gradually increasing time in new settings can be a good way of helping the young person to transition from one to the other.

SPEAK TO OTHER YOUNG PEOPLE, PARENTS AND CARERS

It’s common for young people, parents and carers to have concerns about the young person’s transitions and future. Speaking to others who have gone through a similar process can be reassuring and it can also be helpful to hear what went well and which parts were a bit more difficult. This may help you when planning your transition. Always remember that everybody with autism is different and every transition is different. Therefore, what works for one person may or may not work for another person – but talking it through with somebody usually helps.

More information

We’ve just a launched a new web area on the transition to adulthood as part of our Transforming Lives Project. Find out more about the topics in this article at www.autism.org.uk/living-with-autism/transition-to-adulthood. Our Education Rights Service can offer information on school education rights and entitlements, including transitions, across the UK. Call 0808 800 4102 to leave a message and we’ll call you back. Our Parent to Parent Service offers a confidential telephone support service for parents and carers of people with autism. Call 0808 800 4106.

Thank you It is thanks to generous support from John Swannell and his wife Marianne that we are able to run the Transforming Lives project.

YOUR AUTISM MAGAZINE

FEATURE • MY STORY

My story

Joe and James Joe and James first met two and a half years ago. Joe has a formal diagnosis of Asperger syndrome and since meeting Joe, James is pretty sure that he has autism too. Their story is one of love and support for each other through the difficulties they have both experienced. Meeting online and clicking J o e : “We met on a gay dating website about three weeks before we met up for a first date. We got talking, swapped numbers and talked every night on Skype and Facebook. When I was walking up the hill to meet him for the first time, I had no idea that James had autism. For me it was just a first date, meeting with someone that I had been talking to online for ages, the normal feeling of being slightly nervous, mixed in with excitement. I was not looking for someone who had the same spectrum disorder as me at all, I was just looking for a new boyfriend! But by the time I realised James had autism I had already fallen in love with him.” J a m e s : “I met Joe on a gay dating app and networking website. He sent me a message and asked for my number. I felt happy to get the message and so I sent him my number after a few days and we started talking. Then he added me on Facebook. We used to talk on BBM a lot and on Skype video chat. I was ill at the time so I was around more and we just got on really well, and kept talking. Eventually I asked him to meet me and so I guess that was our first date.” School was a struggle J o e : “Once I got into secondary school, I refused the help that I was offered because of my diagnosis. I just wanted to be like my friends so I tried my hardest to fit in socially and

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not be the kid in the corner who has something wrong with him. I really just wanted to be normal, if such a thing exists!” J a m e s : “I had experienced bullying ever since I started secondary school. I didn’t mix with people and I got targeted for being different. At secondary school it was mainly verbal abuse and being excluded from groups of people, as well as little things like having footballs kicked at me. People would say things

Joe (left) and James have been together for two and a half years.

MY STORY • Feature

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

FEATURE • MY STORY

like ‘loner’ and ‘gay boy’ to me at school. This happened most days. It made me feel depressed and angry – I kind of felt like I was all over the place. I had counselling when I was in Year Ten because I couldn’t cope with it. I wish they had mentioned autism to me then. My dad got involved in the end as I wasn’t going to school anymore and was staying at home. But thankfully I stopped getting bullied as much when I started college.” TWO DIFFERENT EXPERIENCES OF DIAGNOSIS J O E : “I was diagnosed with Asperger syndrome when I was nine or ten. I was still in primary school. I remember it was at a clinic in Chester, and we had to do all these things like put puzzles together and lots of other activities that people with autism or Asperger syndrome would find difficult. I guess I always knew I was different even when I was younger. I found it hard to interact with people socially, and I guess I was a bit awkward as well. It only took the first five minutes of our first date for me to realise James had autism. All the bits of his life he talked to me about, from when he was younger, as well as the way he acted and behaved, told me so. He didn’t really have any friends and had been really badly bullied when he was at school.” J A M E S : “A few years ago, I was at college doing a catering and hospitality course. My mum suspected I had autism when I was 14 or 15, but nothing really came of it. Then I met Joe and his family, who all had experience of autism and Asperger syndrome. They asked me lots of questions and Joe and I went through it all and that’s when I realised I definitely had it. I think of that

Share your story

realisation now with a sense of closure because it meant I now know what my problems have stemmed from, and how they have affected my life. I haven’t thought about getting a formal diagnosis as I know I have autism, based on what I’ve learned about myself.” SUPPORTING EACH OTHER IN SELF-DISCOVERY J O E : “When I met James, he had not come out as a gay yet, but I had. And so I helped him over the hurdle of coming out, which was a big thing for him to deal with. This was part of the self-confidence boost that helped him find a job.” J A M E S : “I first realised I was gay when I was 14 or 15. I wasn’t really attracted to girls, and I realised I liked guys. I had my first boyfriend when I was 16, a guy called John. It didn’t work out because we didn’t click or having anything else in common. I think I dated him to be sure I was gay.” LEARNING TO LIVE WITH AUTISM J O E : “Over time, ‘trying to fit in

Would you like to share your story? Please email YourAutismMag@nas.org.uk, write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, or visit our Facebook page www.facebook.com/ YourAutismMagazine and we may feature you in a future issue.

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socially’ worked for me and I started to build my social levels, gain more friends and become more confident. People started noticing my Asperger syndrome less and less. Then one day I found a book about autism and Asperger syndrome behaviours. I remember I read every single one really carefully, like not making eye contact, having problems interacting socially and having obsessions. I knew that I wanted to focus on these and work at each one, so I did just that. It was really hard and took ages. I kind of think that social interaction for me was like having one leg and trying to get about, you just work at it until you perfect it! Now I think if you met me it would be hard for you to know that I had Asperger syndrome, unless you knew me really well and I told you, which I don’t normally do! Since being with James I’ve tried to help him like I had helped myself before. He’s slowly getting over his confidence issues, and we go out a lot more now as a couple.” A HAPPY FUTURE TOGETHER J O E : “We have now been together for two and a half years and are really happy together. I’m part of a lot of online Facebook groups that help people with autism and Asperger syndrome and also people that are gay and coming out for the first time. As much as I didn’t ever expect to meet someone else on the spectrum, now, to be honest I’m glad I did.” J A M E S : “My favourite thing about Joe is his personality – he’s really outgoing and bubbly. And I just feel we click, we have a lot in common and we have a good laugh. I’m very happy, in fact the happiest I’ve ever been, if I think back to when I was at school and my first relationship with John. I’m more confident now and more assured about life. I have more friends now, it helps that Joe has autism I guess as he understands me better. I think I have my own little life now and I don’t think I’d want anything else, apart from getting married maybe!” ●

WORK IT OUT • FEATURE

Working it out Getting a job and sustaining paid work is one of the biggest challenges facing many people with autism. Being able to access the many great advantages of work, in whatever form, relies on building employers’ understanding of the benefits of including people with disabilities in the workforce, and having help and support available. BY ELEANOR WHEELER

Back in 2002, Nathan featured on a poster for our 40th anniversary campaign

GETTING PREPARED The Government’s Supported Internships scheme aims to help young people aged 16 to 24 with complex learning difficulties or disabilities to make the transition into paid employment. Over the past year, 19-year-old Nathan has been taking part in one of these schemes at Whipps Cross Hospital in Waltham Forest, London, which uses the Project SEARCH model. Nathan says: “Since September last year I have had three jobs at Whipps Cross Hospital. My first job was in the medical library where I worked as an assistant. My second job was in the Catering Office where I worked as a patient administrator. Now I am working in the Outpatients Department. In my latest placement I work on the ‘choose and book’ system making sure the appointments and patient details are correct. I really enjoyed going onto the wards, getting information about the meals the patients had eaten. I found it hard to work on my own without some help in the Catering Office and I have found it easy in Outpatients so far. I have worked with lots of other people in each department. They have all been very kind to me and I liked them very much. When I started my jobs, people showed me how to do different tasks and if I have a problem they will always help me. My favourite part of the job is to catch the bus from near my home and get to work on time and do my work as well as I can.”

“The key is having good support for a person while they are doing the scheme and making sure that it is carried over to any job that might follow.” — Nathan’s dad, Adam

As it draws to a close, Nathan’s parents feel positive about what the scheme has done for his prospects. Nathan’s dad says: “Nathan has grown in confidence during the placements. He has developed a level of independence, not only in his work but in his personal routine. Travelling to work on his own by bus each day has shown Nathan that he does not need to rely on us as much as he once did, and he now cooks his own dinner. His interaction skills are also much better. Nathan much prefers working at the hospital to going to school. We’re no less anxious about his future because there is no guarantee at the end of the year that he will have a job. Like most parents of children with autism or special needs, we don’t tend to look too far ahead. As John Cleese says in

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FEATURE • WORK IT OUT

Nathan at work in the Catering Office with his manager, Agi really pleased which is very nice! I’ve found my support at college brilliant – they’ve been very helpful.” Mark Gilbert runs the program at Plumpton College and believes every college should have one.

the film Clockwork: “It’s not the despair, I can take the despair. It’s the hope I can’t stand”. But, one of the interns working with Nathan has just been employed by another NHS Trust and now has a proper, paying job. The key is having good support for a person while they are doing the scheme and making sure that it is carried over to any job that might follow.”

here full time and I could see myself doing something similar elsewhere, but I’m still open to other options. Once this placement is finished I’ll look for another job. I’ve been thinking about customer service and working a till, but really I could do anything. I’ve learnt some new skills and I’m much more physically fit than I was, being out on the rounds. My parents are

Mark says: “The college first took part in the supported internships pilot, along with 14 other colleges across the country back in 2011. We were able to continue to run it due to changes in funding that came in last year. In many colleges, there is a lack of positive progression for younger people with disabilities, meaning some stay at college simply repeating years. The supported internship should be a logical transition year to take them into the workplace. This year we are expecting that eight to nine of our 21 students (eight of whom have autism) will get some sort of paid work at the end of the program. The difficulty with a workplace is that it can be unpredictable, so we also try to give

In Sussex, Shaun is on a different supported internship program at Plumpton College, which was one of the first colleges in the country to set up a pilot scheme. Shaun says: “I’ve been working at the depot since February or March. I’ve been enjoying it so far. I’ve been on the belt and out on the rounds – it’s been very enjoyable. On the rounds I’ve been picking up peoples’ recycling and putting it in the electronic vehicle. On the belt I’ve been sorting out the recycling, picking out all the plastics. I’m not sure what my favorite part of it is – I like both of them. Each one has their ups and downs. Being out on the rounds is more physical but I’m out of the rain if I’m on the belt so I don’t get wet! I do two days a week – one day on each job. I’d possibly like to work

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Sean on placement at the Lewes District Council Waste and Recycling Depot

WORK IT OUT • FEATURE

Mark thinks all colleges should be running a supported internships programme

“People underestimate what those with learning disabilities and autism can do. There is no point in creating false jobs for people.” — Mark Gilbert, Plumpton College students the tools and the skills to help them deal with a real and challenging environment. In the long run, we don’t help them if we allow them to be inflexible all the time. We aim to train our students so they are able to fulfil a business need. When I talk to our employers, I run through a list of benefits they will get by doing the scheme. The feedback we’ve had is that

more than having qualifications, the most important thing is that people are hardworking, reliable and able to learn from their mistakes. Some of our employers now see us a recruiter because they know we will supply them with good candidates. People underestimate what those with learning disabilities and autism can do. There is no point in creating false jobs for people. Training might take a bit longer, but if you have support in place there is absolutely no reason why you can’t have a really good outcome. ENGAGED EMPLOYERS Supported internships are a key means of preparing young people with autism for the workplace and getting them into employment. But there is also an important role to be played by employers in recognizing the potential of people with autism and other disabilities. Randy Lewis has set an example which others are now using across the world. As Senior Vice President of Walgreens, the largest pharmacy chain in the USA, he worked to introduce a new generation of distribution centres in which one third of the workers are disabled. Randy is the father of Austin, who has autism. Randy says: “Of the people with disabilities on our workforce, around 10% have autism. I think the biggest advantage of employing people with disabilities is that you get a more engaged workforce. The performance is the same, but people stay in their jobs for longer and absenteeism is lower. We’ve shown that it is possible for people with disabilities to be held to the same standards as non-disabled people, and

achieve the same results. To attain this, you need to be prepared to work differently, but actually we haven’t had to make big adjustments. Most of the things we do just use paper and pencil, and the average cost per adjustment is insignificant. For instance, there is a basic arithmetic test that we ask people to do at interview, because we need them to be able to divide cases of products into two. But for people like my son, who can’t do that, we have the calculations he needs written out for reference. If any new calculation comes up, we just add it to his list. There’s a whole group of people who can do the work but can’t get through the hiring process, which means that businesses tend to hire people who are good at getting the job but aren’t necessarily the best people. It’s up to recruiters to focus more on actual work skills rather than interview skills. Sometimes the people doing the hiring don’t actually know what the job skills are! The outcome of education must be employment, of whatever sort. Having a specific member of staff to focus on getting people with disabilities into employment is essential. For employers, if you want to have a big ‘shazam’ culture change, you need at least 15% of your workforce to have disabilities. Once you’re over a certain point, you’ve got to make it work because if people don’t perform, the building won’t perform and you will look bad. It’s like burning your boats when you reach a new shore, so the only option is to go forward! Once we have a critical mass of employers doing this, others will follow and there will be no going back.” Randy’s model has been re-created by Marks & Spencer in the UK, who now have 25% of staff with disabilities in their newest distribution centre in the East Midlands. For more information, call the Remploy contact centre on 0845 600 2517 or email M&S@remploy.co.uk.

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FEATURE • WORK IT OUT

Randy Lewis’ book, No Greatness Without Goodness is published by Lion Books, paperback, £8.99

Jack, Trainee Paintings and Frames Technician

Randy was inspired by his son, Austin

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SUPPORT AT WORK Supporting employers to get the best out of their staff who have autism is something The National Autistic Society can help with. One organization which has benefitted from our support is Tate, which offers traineeships in their Collection Care department, supported by The Heritage Lottery Fund. We spoke to Training Manager Nikki Dinan. Nikki says: “Jack, who has Asperger syndrome, is our Trainee Assistant Paintings and Frames Technician and joined us in July 2013. One of the main difficulties faced in the workplace for people with autism is a lack of awareness and understanding from others. We have been lucky enough to have the support of the NAS throughout the traineeship programme to help us with supporting Jack in his first ever job and also to provide training for our staff on what autism is and the positive contributions people with autism can bring to an organisation. Having a clear structure in place for someone with autism is important. However, being ready to be flexible with your structure to allow for any

adjustments which need to be made is just as important. As with any new member of staff or trainee, it is only after the first couple of months that as a manager or supervisor you are able to start to identify someone’s strengths and weaknesses. This process can take slightly longer with someone with autism, but is well worth the effort. I’ve learned that it is vital to focus on what people with autism can do rather than on what they can’t do.” ●

Find out more To find out more about supported internship schemes, visit www.gov. uk/government/publications/ supported-internships-for-youngpeople-with-learning-difficulties. For advice on transitions into work, call 0117 974 8430 or visit www.autism. org.uk/living-with-autism/findingwork-or-in-employment. Find out about our employment services at www.autism.org.uk/workingwith/employment-services.

Photo of Jack © Lucy Dawkins

“There’s a whole group of people who can do the work but can’t get through the hiring process, which means that businesses tend to hire people who are good at getting the job but aren’t necessarily the best people.” — Randy Lewis

INTERVIEW • TEMPLE GRANDIN

My special interests saved me Temple Grandin is a best-selling author, autism activist and Professor of Animal Science at Colorado State University. In 2010, she was listed in TIME magazine’s one hundred most influential people in the world. We talked to Temple about how having a passion can help overcome social difficulty. BY ELEANOR WHEELER

You have been known to describe high and middle school as the most unpleasant times of your life. Why is this? It was a terrible time. I was called all sorts of names, like ‘tape recorder’. One of the things they called me was ‘work horse’. The only thing that saved me was getting interested in specialised things, which I could do with other students in a formal setting or by myself, like horse riding and the rocket club. How did the bullying make you feel? I’m over it now but it was very upsetting – it was horrible. But that’s where my interests helped. The kids in the rocket club were not the ones doing the bullying. It is so important to get kids involved in forming special interests and learning to work, outside of the home. You could walk your neighbours’ dogs – anything! Some kids get along great in high school, but some kids need to be taken out of school and got into work. A lot of kids are quirky and different. For example, as I speak to you now I’m at a big meatpacking plant, and there are shocks of people working here right now who used to be those kids – and they have grey hair now, they’ve been working here for years, and there are newer younger ones who have come in. It’s good to see them at work.

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drawing I did for a big meat-packing plant, I spent two days walking around the plant and memorising it. There are different kind of thinkers, including visual thinkers and pattern mathematical thinkers – you need to notice that and develop them into skills for a career. I think generally we need to be more outcome-focussed in this respect. Despite the difficulties you’ve experienced, you’ve had great successes in many different areas. How did you do that? That’s because of the good people who helped me. Have you ever experienced bullying as an adult? Oh yes, I have experienced much bullying as an adult. I’ve written about how people messed up designs of the entrance to a dip vat (a piece of agricultural equipment used for covering cattle with insecticide) which I designed, without consulting me and were then shocked when it didn’t work. That design was proven to work very successfully. It was very frustrating. What advice would you give to any of our readers who might be experiencing bullying? One of the things I learned to do was to get very good at what I did. I sold my work and not me. I worked on my portfolio and became the best. I studied hard to become good at doing technical drawings. For a

What are you most proud of about what you have achieved? I’m proud of the fact I could achieve a lot of changes in my profession, and could be successful in my industry: to have had great career success, and to be a role model. When I see people with autism that is what I want for them – a successful career. I work very hard – I block out my calendar two years in advance. They called me a work horse at school and I’m living up to my name! ● Temple Grandin’s latest book The Autistic Brain is published by Houghton Mifflin Harcourt. An ebook version is available from Ebury Digital (pictured).

INTERVIEW • Think Autism

“I would like to thank The National Autistic Society and its members for the part you have played in developing the new strategy.” Minister for Care and Support, Norman Lamb

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Think Autism • INTERVIEW

Think Autism: what does it mean for you? In April, the Government launched Think Autism, the new strategy for adults with autism living in England. Minister for Care and Support, Norman Lamb, launched the strategy in April. Your Autism Magazine asked him your questions, gathered from Facebook1, along with some of our own. What’s happening to help adults with autism get proper mental health support, including diagnosis and treatments such as counselling? — Ally I want to see people getting the necessary follow up support after diagnosis to prevent mental health problems. More can be done around early intervention and crisis prevention. However, if a person does go into crisis, mental health support should be a priority. The Government’s Mental Health Crisis Care Concordat, signed by more than 20 national organisations, is a commitment from the agencies involved in supporting someone in a crisis to work together to improve the system of care and support so people are kept safe and are helped to find the support they need. Many staff delivering IAPT (Improving Access to Psychological Therapies) services admit they do not have any autism-specific training. Where can people with Asperger syndrome go to find autism-specific psychotherapeutic services? — Carolann If an IAPT service can’t help a person with Asperger syndrome directly, I would expect them to make arrangements so that other local services can. We have produced a range of guidance encouraging more 1

standardised services but with sufficient flexibility to assure access for groups in the population that have particular needs. Local clinical commissioning groups should be challenged to ensure such support is available. It feels like there is a postcode lottery for services. How is the new strategy going to address this? — Julie Think Autism is part of our drive to get a more consistent approach but while the Government can set the framework, remove barriers and increase awareness, long lasting change is about empowering local communities. My role is to ensure the different parts of the system are working together. A key piece of work in the strategy is the further work that Public Health England will co-ordinate, on the national autism self-assessment exercise. I would urge everyone to look at last year’s results across all 152 local authority areas in England. This information is freely available at www.ihal.org.uk/ projects/autism2013. Look at how your area is doing against other areas. If they are not doing as well, ask them why. A further national exercise towards the end of the year should bring all this information together in a single place digitally that is more accessible so local people can hold their council and other local services to account.

What support is in place to ensure there is provision for adults with autism once they have no family or friends to support them? — Helen We will highlight in the forthcoming statutory guidance linked to Think Autism that in planning local services, local authorities should ensure that they are including the specific needs of older people with autism. The new Care Act also puts a duty on councils to provide independent advocacy where a person has substantial difficulties in navigating the care system and has nobody around to support them. We also said in Think Autism that we would look to work with partners to address the findings of the NAS report Getting On? Growing older with autism, which followed work by the House of Lords Autism and Ageing Commission. What proposals are in place to help adults with autism into work? — LLwyd Being able to work is a big part of independent living and I am absolutely committed to making sure people with autism have the support to get into work and stay in work. That means promotion of the autism agenda to employers, improved autism awareness training and improvements that help JobCentre Plus staff find opportunities for people with autism. A better

Questions gathered on www.facebook.com/YourAutismMagazine and www.facebook.com/NationalAutisticSociety. YOUR AUTISM MAGAZINE

INTERVIEW • Think Autism

understanding of disability in general and autism in particular will help businesses recruit and retain staff who will be assets to the workplace. The Department for Work and Pensions will be reporting back later in the year on what operational changes they can make, how they are training their staff and how they can work with employers to promote the skills of people with autism. I personally want to see much more being done to offer apprenticeships to people with autism and I have made this a priority in Think Autism and for innovation funding.

“It still takes too long for too many people to get the right diagnosis and treatment. But I also think we have come a long way.”

Many people with autism have come to feel that they are not being given a fair chance to prove that they can make a contribution to the workplace, especially in the professions such as law. What are you doing to make sure qualified people with autism have the chance to show what they can do? — Simon As a lawyer before I entered politics, I know that the professions can do more to make use of the skills of well-qualified people with autism. There is a lot of work going on but my sense is that it’s patchy and when it happens it’s in isolation. We will create a champions network to put a structure around those discussions and ensure that many people around the country doing good work in this area have a platform to champion employment of people with autism.

the same focus as physical health. We have commissioned the National Institute of Health Care Excellence to produce guidance which will lead to quicker diagnosis. There is also a role for NHS England in looking at people’s experiences of diagnosis and we will include the importance of timely and effective services in the upcoming statutory guidance on autism for local authorities and the NHS.

Why does it take so long to be assessed for an adult autism diagnosis? — Charlotte I agree that it still takes too long for too many people to get the right diagnosis and support. But I also think we have come a long way in treating autism and mental health with

The Care Act has good aspects but we are worried that some of the principles of Think Autism are undermined by the system for assessment. Do you think the proposed criteria for eligibility for care adequately reflect the needs of vulnerable people with autism? The Care Act 2014 will protect the

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most vulnerable in our community, such as people with autism. The Act will for the first time place safeguarding on a legislative basis. Local authorities will have to carry out a safeguarding enquiry where they suspect that a person might be at risk of abuse or neglect. There is rightly no eligibility criteria for this. This recognises that the response to safeguarding issues is rarely care and support, but intervention which might involve other agencies such as the NHS or police. When carrying out a safeguarding enquiry local authorities should continue to assess the person and determine whether they have eligible care and support needs that they must meet. During the assessment and eligibility determination, local authorities must consider the person’s wellbeing, which we have defined in the Act as including prevention of abuse and neglect. So consideration of abuse and neglect will be an inherent part of the assessment and eligibility process. What do you hope will have been achieved by the time the strategy is reviewed again in five years’ time? I hope to see real and meaningful progress towards achieving our vision to drive improvements for the lives of people with autism. This means positive outcomes against the fifteen Priority Challenges for Action that have been identified by people with autism, carers and professionals. It will take time, but we are moving forward in the right way. I hope more and more people will ‘think autism’ and ask themselves what they can do in their work and community. We will next take stock when we publish a summary of what has been achieved under Think Autism in August next year. ● To find out more about Think Autism, visit www.autism.org.uk/ working-with/autism-strategy.

ADVICE • AUTISM AS A CLINICAL PRIORITY FOR GPS

Autism as a clinical priority for GPs What does it mean for you and your family? Last year, The Royal College of GPs made autism a clinical priority for 2014-17 across the UK. Carole Buckley is a GP who played a major role in achieving this success, which has also been one of the great milestones of our Push for Action campaign. She explains what the prioritisation means in real terms for people with autism and their families. BY HEIDI AHO

Carole Buckley is a GP and a parent What benefits are there to having a GP who understands autism? By the time my second son David was 18 months old it was clear that there was something different about him. It was a GP who referred him for an assessment and after about a year we received the diagnosis of autism. During the most difficult times when David’s behaviour was at its most challenging we were supported by lovely GPs. What can a well-informed GP do to help people with autism? Autism often prevents the individual from accessing all other health care services, such as mental health services, leading to health inequalities and poorer outcomes in physical health. A GP can provide health care and make sure their patients with autism are referred on appropriately. Family members and carers often have additional health needs related to their – sometimes stressful – caring role and GPs can help them as well.

A “It newhas condition called to me, throughout my been clear social communication career, that there is a lack of knowledge disorder has been added.

and understanding about autism among GPs and that has consequences for families and carers.”

How did you manage to make autism a clinical priority for GPs? Along with Dr Michael White, a GP from Hampshire, I proposed autism as a clinical priority to the Royal College of General Practitioners in May 2013. Both submissions were supported by The National Autistic Society and their campaigning helped ensure the college chose autism as a priority from the 14 other topics suggested. The NAS then worked with the college to

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ADVICE • AUTISM AS A CLINICAL PRIORITY FOR GPS

support the steering group, help develop the programme and make sure the right stakeholders were involved. What is the Royal College of General Practitioners ? What is a clinical priority? The Royal College of General Practitioners is the professional body for GPs. It accredits new doctors to the profession and guides the ongoing professional development of its members. A clinical priority runs for three years and a steering group sets a programme of work with the aim of improving knowledge and awareness amongst GPs regarding that clinical priority. What will the programme to raise awareness about autism entail? The steering group for autism has set an ambitious programme that covers: • raising awareness of autism and promoting earlier diagnosis • improving education and training by making autism a key constituent in the training curriculum for general practice • providing resources to support GPs already in practice • supporting the Clinical Commissioning Groups (CCGs) to implement current guidelines and quality standards in their area • identifying and supporting families and carers • creating autism-friendly primary care communities • encouraging primary care to take part in evidence-based research around autism • working with other providers of services such as pharmacists, dentists and opticians to extend the support and training to cover their workforce.

Requesting reasonable adjustments from your GP is one way you can benefit from the programme.

What can people do to help make sure the changes are implemented? Everyone can help by mentioning the programme to their GP, by checking that the diagnosis is ‘coded’ on the computer system and by requesting that reasonable adjustments are made to give people with autism equal access to services. Some measures are: appointments at the beginning or end of the day, longer appointment times, being able to wait in a quiet area and encouraging continuity of care by specific clinicians – except in an emergency, but even then the special needs of the person should be ‘flagged’ on the computer. ●

“The program covers everyone on the autistic spectrum from cradle to grave, irrespective of intellectual ability, along with all those involved in their care and support.” 34

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Find out more The Royal College of General Practitioners For more information about the work of The Royal College of General Practitioners, visit www.rcgp.org.uk.

The National Autistic Society Our website has information about autism for GPs. Visit www.autism.org.uk/gp.

ADVICE • PREVERBALISM

Understanding preverbalism The term ‘preverbal’ describes the communication skills of a child or adult who is an intentional communicator but has not acquired speech. Our Specialist Speech and Language Therapist at Robert Ogden School explains the characteristics of preverbalism, and some methods for communicating with children or adults who are affected by it. B Y R U T H B U RT O N W O O D

REVERBALISM is a characteristic set apart from other communication difficulties, such as selective mutism, (an anxiety disorder which prevents people from speaking in particular social situations), or oral/ verbal dyspraxia, which makes it harder to execute the motor plans required to articulate speech. Any of these may be present alongside autism and should be considered before someone is assumed to be preverbal. Why are some people preverbal? There are a range of underlying difficulties which may lead to a lack of speech, including problems with perceiving speech, analysing speech, or mapping words against their associated objects or other environmental information. Any of these reasons could affect how words are stored within the brain, and the ability to retrieve them for speech. It is important to note that a person can still have language, despite not having any speech. Speech is the verbalisation of our language, and language can still be expressed through other means.

How can we use and develop language skills for communication? For many years we have known that people with autism can have strengths in understanding and using visual systems, and this strongly applies to communication. Advances in technology have meant that we can use neuroimaging to capture what processes are occurring in our brains. Researchers have found that people with autism showed increased neuronal activation in the regions of the brain which process visual stimuli. Typically, language is analysed in a different part of the brain – that is in the ‘language centres’ near our ears. This confirms our long understanding that using visual supports reduces barriers to learning and communication. Careful consideration must be made for individualised support, as one approach doesn’t necessarily

work for everyone. The ‘hierarchy of understanding’ is a useful tool to look at how communication can be used to pitch support at the correct level. It says that the most complex

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Advice • preverbalism

means of communication is verbal language. The second most complex is the written word, below that comes symbols, then photos, then objects of reference. The least complex is the real object. Once the appropriate method of communication has been decided, this can be used to support understanding and use of language in both verbal and preverbal people with autism at the appropriate linguistic level. Some approaches can be used as a means to help both understanding and use of language in a two-way process; some are exclusive to one or the other. Supporting the understanding of language using visual aids can include now-and-next boards, schedules, calendars, teaching resources, instructions such as recipes, and stepby-step processes, Aided Language Stimulation, Makaton, Sign-a-long, Colourful Semantics and Social Stories™. The use of visuals to support expressive language skills include Picture Exchange Communication System (PECS), Pragmatic Organisation Dynamic Displays (PODD), communication books, other Augmentative and Alternative Communication (AAC) devices, Talking Mats, Makaton, Sign-a-long and Colourful Semantics. When these approaches are used consistently across settings, embedded in activities and within the curriculum, this increases the generalisation of language skills. Many of these approaches are also available on computers and tablets in addition to low-tech paper versions. Interactive experiences are also vital for developing communication skills. ‘Intensive Interaction’ has been known to be a powerful approach in encouraging the fundamentals of communication, through which verbalisations and speech can be modelled. Singing songs which have actions and leaving pauses at key points in the song may help to elicit verbalisations or speech, and any attempt at verbalisation should be praised.

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The use of symbols is one of the most frequently used means of supporting the understanding and expression of language, and it is vital to make a clear distinction between the function of each. Symbol supports, which are used to support comprehension (for instance in visual timetables, schedules or calendars), shouldn’t be confused with the Picture Exchange Communication System (PECS). Visual supports and PECS symbols may be created by the same symbol programme, however the former is usually used to support comprehension and the latter is used by the individual to express themselves. Just like anyone else, people with autism may have a preference for which of the approaches listed above works best for them, and this should be an important acknowledgement when supporting them. How can we help to develop speech? Unfortunately, there is currently little research evidence to provide a clear and effective approach to developing speech in preverbal individuals with autism. There are some interventions available which have a primary aim of developing speech, but at present their limited evidence base means that they are not yet recognised as being effective, so are not typically offered as an intervention. When using approaches for developing language, communication and interaction skills, it is important to remember that speech should always be modelled alongside visuals or signs suited to the individual’s understanding. Speech cannot develop without its verbal model. Speech is also just one part of communication, so all areas must be considered to facilitate functional communication. PECS is a very common approach to providing people with autism with a ‘voice’. It consists of a clear and structured approach to developing communication and interaction skills.

Always model speech alongside visuals or signs suited to the person’s understanding Functional speech is not the primary goal of PECS, but speech development is not uncommon. Whilst speech can develop at any time, research has shown that individuals who use PECS are more likely to develop speech around the fourth phase, and of those who used PECS appropriately across settings, activities and within the curriculum over a long term period, over three quarters developed spontaneous verbal speech. Nobody can predict the future and say whether a person with autism will ever develop functional speech or not. Therefore every effort must be made in the interim to help develop language, communication and interaction skills in a total communication environment so that people with autism can have their own voice, whether it is verbal, symbolic or signing. Key points to remember •T he ‘hierarchy of understanding’ is a useful tool when deciding which visual supports are most suitable for the individual. •U se verbal language alongside visuals, whether these are symbols or signs. •M odel language using key words

The words we use

as you do activities to ensure a communication-rich environment. • Create interactions that are fun and capture attention, such as ‘Intensive Interaction’, singing, sensory exploration and play. • Ensure that there are many opportunities throughout the day for communication to take place, for instance to request food, drink, activities and other motivators. • Do not insist on speech, but leave the opportunity open for the individual to make an attempt at verbalisation if they wish to. Praise any verbalisation which they make and model the target word back to them. • Visual communication systems do not deter either the development or use of speech, but the opposite because we are ‘talking their language’. • Personalise any visual communication systems to an individual’s needs and skills. • If speech occurs, do not stop using any other communication systems that you may have in place, as it is likely that they helped to develop speech and may continue to do so. Discuss this progression with the person with autism’s speech and language therapist along with what

the next steps for development should be. •P raise all attempts at verbalisation or speech. •C elebrate any progress in speech, language and communication! ●

The term ‘preverbal’ is increasingly being used in place of ‘non-verbal’, as non-verbal implies that a person with autism may never develop speech. For some, this may be true. However, with an increase in the implementation of speech, language and communication interventions, the last ten years have seen a decrease from approximately 50% of people with autism being preverbal to around 25%.

Support and guidance The National Autistic Society If you would like to talk about any of the issues mentioned in this article, call our Autism Helpline on 0808 800 4104.

Useful websites and resources • PECS: www.pecs-unitedkingdom.com • PODD books: www.novita.org.au/Content.aspx?p=683 • Talking Mats: www.talkingmats.com • Intensive Interaction www.intensiveinteraction.co.uk and www.phoebecaldwell.co.uk • I CAN children’s charity: www.ican.org.uk • The Hanen Centre: www.hanen.org • Royal College of Speech and Language Therapists: 5 Good Communication Standards www.rcslt.org/news/docs/good_comm_standards • Colourful semantics information: Colour Coding for Learners with Autism by Adele Devine (Jessica Kingsley Publishers) • Aided language stimulation: Communication Displays for Engineered Preschool Environments Books I and II by Carol Goossens, Sharon Sapp Crain and Pamela S. Elder (Mayer-Johnson Company)

YOUR AUTISM MAGAZINE

Helen Kalia runs our Autism and Ageing Advice Service

Autism and Ageing Advice Service

How the NAS can help you The Autism and Ageing Advice Service was set up in 2013 as part of a new project to support adults with autism as they move into middle and older age. Helen Kalia, who runs the service, explains what it provides and how it can help.

he need to provide advice for older people with autism and their families has become apparent, both because the first generation of people diagnosed as children are now moving into later life and, at the same time, more adults are being diagnosed. The service is open to anyone in the UK aged 40 or over with autism, their families and carers. Our aim is to help people to identify steps they can take to resolve issues. We can advise on welfare benefits, community care and housing. This could, for instance, be helping to explain a social care complaints procedure to enable you to challenge a decision, or by signposting to additional support – such as an advocacy service – to help with this. One of the big issues at the

moment is benefits advice relating to Employment Support Allowance and the move from Disability Living Allowance to Personal Independence Payments. The benefits system has never been the simplest thing to understand and it is going through substantial changes at present. This is causing enormous anxiety. The assessments for sickness and disability benefits have always caused worry for claimants. We can help by explaining the criteria used to decide

if you qualify and supporting you in identifying which parts apply to you. ● Email advice40plus@nas.org.uk to receive direct advice or to arrange a telephone appointment. Alternatively, call our Helpline or write to Helen Kalia, The National Autistic Society, 393 City Road, London, EC1V 1NG. For more information on autism and ageing, visit www.autism.org.uk/ maturity.

“The benefits system has never been the simplest thing to understand and it is going through substantial changes at present. This is causing enormous anxiety.”

Did you know?

This 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.

Further support

The Glasgow Person to Person service is a telephone support service for adults with autism who are aged 40 years or over and live in the Greater Glasgow area. To access the service, call Gillian McCarthy, Person to Person Coordinator, on 07768 855275 or email gillian.mccarthy@nas.org.uk.

YOUR AUTISM MAGAZINE

RESOURCES

Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders AUTHOR: Davida Hartman PUBLISHER: Jessica Kingsley Publishers PRICE: £19.99 VERDICT: A very informative and interesting read. THIS IS A VERY INTERESTING BOOK covering a range of issues experienced by children and adolescents with autism. It contains relevant information to equip professionals with the tools to approach this subject. The book covers each key topic by discussing difficulties that children and adolescents may face, and laying out approaches for how to manage these issues. It also includes related resources that can be photocopied and used to support these approaches. The book is very easy to read and contains key examples and alternative approaches for professionals to use to develop a tailored sexuality and relationship education programme for young people that is relevant to them and also fun. A systematic approach for putting together a plan with the relevant resources is also included. Overall, reading this was time well spent and has furthered my understanding of young peoples’ sexuality and relationship struggles. It contains some useful preventative measures which may be used with young people of different ages and at various stages in their lives. Reviewed by Clare Kennedy, Senior Practitioner at Daldorch House School.

Giveaway For the chance to win a copy of Asperger syndrome: A Helping Hand, a DVD about practical strategies for young people with Asperger syndrome, tell us the best piece of advice on communication that you’ve ever received. Email YourAutismMag @nas.org.uk with your name and contact information by 15 September.

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

Our six favourite… children’s books

MY BROTHER IS DIFFERENT BY LOUISE GORROD This is a book for pre-school children about having a brother with autism. It was written to help siblings understand why their brother or sister behaves differently to them.

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THE ADVENTURES OF MAISIE VOYAGER BY LUCY SKYE Maisie is a girl with autism who solves the mystery of the kidnapping of her aunt. This story offers a positive heroine with a unique outlook on life that all children can relate to, especially those with autism.

WHEN MY WORRIES GET TOO BIG! BY KARI DUNN BURON This book helps children of primary school age with autism understand more about their condition and what to do when they are overloaded with stress.

RESOURCES

Mindful Living with Asperger’s Syndrome:

The Disappointment Dragon

Everyday Mindfulness Practices to Help You Tune in to the Present Moment

AUTHOR: K.I. Al-Ghani, illustrated by Haitham Al-Ghani

AUTHOR: Chris Mitchell

VERDICT: A useful and versatile starting point for talking about disappointment with children.

PUBLISHER: Jessica Kingsley Publishers

PUBLISHER: Jessica Kingsley Publishers PRICE: £12.99

PRICE: £12.99 VERDICT: A useful, step-by-step guide to dip into at any time.

MINDFUL LIVING WITH ASPERGER’S SYNDROME is a delightful book. Author Chris Mitchell was diagnosed with Asperger syndrome at the age of 20, and bases the book on his own life experiences, travels and meditations. The book combines an informative account of what Asperger syndrome is for anyone who might be unfamiliar with the condition, with a clear explanation of mindfulness. He dispels any myths that a change of religion is required in order to practise mindfulness and is honest in his recognition that any change will not happen overnight. The book is well written in easy language with many examples of exercises which can be done to start on the road towards being aware of ‘being in the now’. Mitchell shows how, whether on the autism spectrum or not, most people do not live in the present. Reviewed by Lorraine Daly, parent of an adult with autism.

I AM SPECIAL BY PETER VERMEULEN A workbook for children ages 11+ and teenagers with autism to help with understanding of the condition. The book includes a theoretical introduction and a series of worksheets.

THE DISAPPOINTMENT DRAGON introduces children to the concept of disappointment in a fun, easy to read, accessible way. The book emphasises the importance of trying to see the positive side in disappointing situations and being hopeful. It includes three stories which detail different types of disappointment and shows how the characters in the story coped with their disappointment. The stories provide a good starting point for parents, carers or teachers to discuss disappointment and the bright illustrations help to bring the stories to life. There is also a list of useful advice and strategies at the end of the book. This topic can sometimes be overlooked, but this book may help you to address it with children, either one-to-one or in a group setting. Reviewed by Naomi Cobley, Behaviour Coordinator at Radlett Lodge School.

BLUE BOTTLE MYSTERY: AN ASPERGER ADVENTURE BY KATHY HOOPMAN Aimed at the 9-13 age group, this novel tells the story of two young boys, one of whom is diagnosed with Asperger syndrome as the narrative unfolds.

THE RED BEAST BY K.I. AL-GHANI WITH ILLUSTRATIONS BY HAITHAM AL-GHANI Rufus needs to learn to tame the red beast inside him. This illustrated book is for children aged five and older and is good way of introducing anger control to younger children with autism.

YOUR AUTISM MAGAZINE

FLASHMAN Flashman’s coolness at high speeds makes him faster than older drivers on the circuit

I’m a racing driver! Teenager Flashman Finneran has been karting and racecar driving for the past seven years. His fearlessness and skill behind the wheel has led to awards and might well be the beginning of a career.

UFFOLK TEENAGER Flashman Finneran, has enormous determination to succeed even when the odds are stacked against him. Born three months prematurely, his entry into the world was a traumatic one. His parents were certain they would lose him and he battled to survive. Until he was six he attended a mainstream school along with his twin sister Ember, whom he adores, but as his difficulties became more apparent to the teaching staff, his parents were asked ‘politely’ to find him another school. Shortly after his departure he was diagnosed with autism. Flashman couldn’t cope with the subsequent specialist units he was enrolled in. Nowhere seemed able to provide him with the right kind of support. Stressed out by the environment and unable to make friends, he would frequently run away at lunchtime and head straight to his dad’s office in town. When school failed to engage him, his family tried hard to find something that would. His dad Ken had always had a passion for karting and motor racing so introduced his son to Formula Karting to see if the sport would capture his imagination too. It did, and for the past seven years Flashman, has had a great deal of success. He’s now progressed onto racing cars and is a Ginetta Junior driver. Travelling at high speed simply isn’t an issue for him, he remains perfectly calm behind the wheel, doesn’t panic at corners and, at only 13,

is much faster on the track than older drivers on the circuit. His past awards have included being crowned ‘driver of the day’ and winning the coveted Lewis Hamilton True Grit Award for an ‘Outstanding Drive.’ Competing isn’t just about fast times. Drivers also have to undergo rigorous testing of their fitness, racing and circuit knowledge. Flashman has struggled with reading and writing but this hasn’t prevented him from passing the tests. He trains regularly at the local gym and has managed to memorise everything he needs to answer the questions. This year he was offered a fantastic opportunity to use the Formula One simulator run by Cranfield Motorsports, part of Cranfield University, free of charge. Practice sessions in the simulator helped him negotiate unfamiliar tracks and experience the feel and noise of a high-performance car before race day. Keep an eye out for Flashman as be might well be the next Lewis Hamilton! ●

If you have autism or know someone with autism who is doing something amazing, we’d love to hear about it. Email YourAutismMag@nas.org.uk.

AUTUMN 2014