Your Autism Magazine Summer 2016 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 50 – NO 2 • SUMMER 2016

Bonus content online! Find out more inside

AUTISM AND EMPATHY

LEAVING HOME WHAT IS POSITIVE RISK? I’M A... CIRCUS STAR

Why the stereotype is all wrong

Changing the game

TOM MORGAN The rugby and Undateables star on growing up undiagnosed

One family’s efforts to get a sensory room at Sunderland FC

Why we’re speaking out Meet the Marshalls, stars of our new campaign

Summer 2016 EDITOR Eleanor Wheeler WRITERS Flynn Hagerty, Alice Todman 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 Zinc Media 13th Floor, Portland House Bressenden Place London SW1E 5BH Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@zincmedia.com www.zincmedia.com

SUBSCRIPTIONS Only available to members of The National Autistic Society C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 membership@nas.org.uk DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Wyndeham Grange Tel: 01273 592244 F RO N T C OV E R Photograph by Craig Goode www.craiggoodedesign.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 2016 Summer Vol 50, No 2 The National Autistic Society ISSN 2055-0413 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of the 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.

ummer is almost here! I hope you enjoy what we’ve got for you this issue. You’ll find inspiring stories from autistic circus worker, Steve (page 46), campaigning parents Kate and Peter Shippey (page 25) and the Marshall family (page 16), whose ten-year-old son, Alex, appears in our TMI film – part of our biggest ever public understanding campaign which launched last month. It has been watched over 40 million times already! If you haven’t seen it yet take a look at www.autism.org.uk/tmi/film. In addition, we’ve got an interview with autistic rugby player Tom Morgan (page 28), and advice on getting active (page 37) and leaving home (page 14) – plus much more in this year’s education supplement, such as a how-to guide on home-schooling. I hope you have a wonderful summer, whatever you get up to.

Contents 04 News 10 Research in focus 13 Readers to the rescue 14 How do I... leave home? 16 Feature: my story 21 Feature: empathy 25 Feature: the Shippeys on access 27 Interview: Tom Morgan 33 Advice: positive risk 37 Advice: physical and mental health 41 Spotlight on support: from other parents 44 Reviews 46 I’m a… circus worker!

Eleanor Wheeler EDITOR

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33 YOUR AUTISM MAGAZINE

News

A round-up of the stories that affect you A hustings in Glasgow

UC is opening up to more claimants

AUTISM AWARENESS AT ELECTION TIME

POLICY

Universal Credit expansion begins From this month, roll out of the Government’s full Universal Credit (UC) service for all types of claimants begins. UC is a means-tested benefit for people who have a low income or no income and whose savings are below £16,000. Previously, it was only available to new claims from people claiming as job seekers. But it will now open up to all new claimants, and existing claimants who have a change of circumstances, which would mean that they have to change the type of benefit that they ask for. For example, you’ll be able to claim as someone not able to

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work due to their condition, someone not able to work due to being a carer, or if you are in work but on a low income. The roll-out will be phased, appearing in different job centre areas on different dates. The Government plans to finish rolling it out to new claimants by June 2018, but they don’t expect to have introduced all claimants to UC until 2021. You can check whether your job centre area is affected yet at www.gov.uk/guidance/ jobcentres-where-you-canclaim-universal-credit. Read more at www.autism. org.uk/universalcredit.

With parliamentary elections happening in Scotland, Wales and Northern Ireland this month, campaigners across the UK have been working hard to make sure autism is a priority for every candidate hoping to be elected. In Wales, several of our branches hosted hustings events. Organisers in Swansea, Blaenau Gwent, Pembrokeshire, Wrexham, Merthyr Tydfil and Bridgend aimed to get future Assembly Members to understand more about the needs of local autistic people and their families. Policy officer, Mat Mathias, said, “The hustings give autistic people, their families and carers a chance to meet and question the candidates seeking to represent them. It is also an opportunity for local politicians to learn more about autism and the everyday issues that face our members and supporters.” In Scotland, a hustings event was held in Glasgow. The I’m One campaign has also been asking autistic people and their families to meet their local candidates for a coffee and a chat. Jenny Paterson, Director of The National Autistic Society Scotland, said, “Holding a candidate coffee morning is a simple but impactful way of making sure Scotland’s future leaders know what autism is, and how it impacts the lives of people living in their area.”

SUMMER 2016 • NEWS

Autistic speakers talked about different aspects of life on the spectrum

Daniel Ezra in Undercover

AUTISM HITS THE SMALL SCREEN Portrayals of autism in the

media can hugely influence public understanding, and autism is having a bit of a TV moment this year. You may have seen the major new six-part BBC drama, The A Word on BBC1 in March and April. With a screenplay by award-winning writer Peter Bowker, who has worked in special education, it explores complex family relationships in a small town in the Lake District, and the impact a young boy’s autism has on his family and closeknit community. The first episode was watched by 4.7 million people. The National Autistic Society worked with the show’s production team for over a year, reviewing scripts and advising on issues related to autism diagnosis. Jane Harris, Director of External Affairs, said, “The week after episode one aired, a mother with an autistic child told us a member of the public was kinder to her than people had been previously and said ‘I know, I’ve watched the programme’. So as far as we can tell, it is already having an impact.”

Another series, Employable Me, broadcast this Spring on BBC2, is a three-part documentary series about autism and employment. Each episode follows two people who have been struggling to find work. The National Autistic Society advised the series’ producers to try and make sure that it showed a realistic portrayal of autistic people’s search for work. Our charity also advised on BBC drama Undercover in which actor Daniel Ezra, plays an 18 year-old autistic man. Daniel visited Sybil Elgar School as part of his preparation from the role. We’ve also advised on the production for Holby City, to make sure an autistic character, Jason, who is played by autistic actor, Jules Robertson, was accurate. Read an interview with Jules Robertson on Your Autism Extra at www. autism.org.uk/digitalyam. Catch up with The A Word, Employable Me, Undercover and Holby City at www.bbc.co.uk/iplayer.

A CELEBRATION OF AUTISM AT AUTISMCON Around 700 autistic people and their families from across the country came together in March for AutismCon: Festival of the Mind – a unique, daylong convention of talks, workshops and performances for autistic people. One attendee said, “It was fantastic to see so many people coming together to celebrate our community, and the fact that it was devised and run by people on the spectrum made it even better.” NOTTINGHAM SELF-HELP GROUP BECOMES VOLUNTEER BRANCH Last month, a self-help group in Nottingham joined our charity as a volunteer branch. Run by autistic volunteers and with around 75 members, the group offers support for autistic adults in the local area. One hundred and thirteen volunteer-run branches across the UK support over 20,000 people in different ways each year. Nottingham Branch Chairs, Nikki and Arran

This September, Autism-Europe’s eleventh international congress will take place in Edinburgh. With a theme of ‘happy, healthy and empowered’, the congress will look at advances in practical and scientific knowledge about autism. Experts from across the continent will give talks and lead workshops. To book a place, call +44 (0) 115 911 3367 (9am-5pm, Mon-Fri).

YOUR AUTISM MAGAZINE

NEWS • SUMMER 2016

The programme doesn’t do conventional job interviews

Legal service launches for young offenders with SENs

MICROSOFT’S INCLUSIVE HIRING PROGRAMME COMES TO THE UK This spring, Microsoft UK announced the launch of a pilot programme for hiring people with neurodiverse conditions, including autism and Asperger syndrome, for their full-time UK-based positions. The programme will be modelled on one piloted at Microsoft’s head office in Redmond, USA, which resulted in 11 new autistic employees being hired. In the programme, the job ‘interview’ is structured as a multi-week academy to help put candidates at ease and give them more time and space to show their skills. Microsoft’s UK CEO Michel Van der Bel said, “While each individual is different, many people with neurodiverse conditions have skills which include a strong ability to retain information and analyse data, as well as in-depth and detailed computational thinking skills.” To apply for the pilot programme, email your CV to msautism@microsoft.com.

Launched earlier this year, Project EPIC (which stands for Educating young Persons In Custody) provides free legal advice and representation to young people with special educational needs who are in or are leaving detention. The service can help with SEN assessments, and with getting the right education and educational support in place in detention and afterwards. There are disproportionately high rates of SEN among young people in detention. In response to this fact and acknowledging the need for a new approach, the Government introduced new regulations which came into force last year. The regulations explain for the first time what local authorities should be doing to support young people aged 18 and under who are detained in a young offenders’ institution, secure training centre or secure children’s home. They

Earlier this year, young fundraisers Amara Baxter, Lizzie Hurford, Violet Mcardle and Antonia Standen completed a fun run in Torbay, raising around £500 for our charity. They now plan to make it an annual event. Antonia said, “Before I started the run I was a little nervous but at the end I felt really happy that I had completed it.” Antonia’s four-year-old twin brothers Luca and Louie were diagnosed with autism last year and their parents, Paula and Kevin, attended an EarlyBird course with The National Autistic Society. Antonia and her friend, Violet, planned the run as part of their Torbay Civic Award, and were later joined by cousin Amara, who helps to look after the twins, and Luca’s teacher and local autism champion, Lizzie. Kate Donohue, Head of Fundraising at The National Autistic Society said, “Without people like Antonia, Violet, Lizzie and Amara, we wouldn’t be able to continue our work supporting people on the autism spectrum and their families.”

Do you live in Northern Ireland and fancy doing a zip wire across the Lagan? We are looking for participants for a fundraising event in August. For more information email shirelle.stuart@nas.org.uk.

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Find out more at www.facebook. com/projectepiclaw. If you know someone who could benefit, you can email (in complete confidence) projectepic@outlook.com.

SISTER STARTS TORBAY FUN RUN FOR AUTISM!

The star fundraisers with twins Luca and Louie

also cover the period before and after detention. Project EPIC was set up by two education law barristers in response to this new framework, and aims to provide the support which the regulations outline.

SUMMER 2016 • NEWS

News in brief

AUTISM AWARENESS CAMPAIGNER WINS AWARD Future trainee solicitor, Jonathan Andrews, has won the Outstanding Achievement by Person on the Autism Spectrum Award at our Autism Professional Awards (APAs). Jonathan is now a member of the Reed Smith Disability Task force and has built an incredible network of organisations in the professional sector that want to learn more and promote opportunities for people with disabilities. He also writes booklets on autism in the workplace offering practical guidance for employers and challenging stereotypes. Ella Blakesley, his colleague at Reed Smith LLP, said, “Jonathan is the first and only lawyer I know

Jonathan: improving autism understanding at work who is open about his disability and actively championing autism. This is incredibly significant in an industry that is not recognised for being as diverse as it should be. Jonathan is not afraid to be himself and publically talks about his experiences and challenges, which is incredibly brave and inspiring.” Read more about this year’s APA winners at www. autismprofessionalsawards. org.uk/winners.

Too Much Information, our biggest campaign ever has launched! Watch our film featuring 10-yearold Alex (page 16) to show what having a meltdown is like at www.autism.org.uk/tmi/film.

GET ON YOUR BIKE THIS SUMMER If you’re looking for something to get you active this summer, why not take part in our third annual Ride for Autism on 9 July in Newmarket, Suffolk? You can choose your distance (25, 50 or 75 miles) and get dressed up for some summer fun, while raising valuable funds for our charity. Find out more at www.autism.org.uk/ ride4autism.

HELPING YOUNG PEOPLE INTO WORK IN WALES A £10m project has launched in Wales to help young people with learning disabilities and autism into employment. The five-year Engage to Change project will work with 800 employers across the country to help 1,000 people into paid six to twelve month placements. Researchers at Cardiff University plan to analyse the details of the project to inform future policies.

GREAT VARIETY AND FUN FOR WORLD AUTISM AWARENESS WEEK

NEW FORUM FOR REPRESENTING MEMBERS’ VIEWS

This year saw our second ever World Autism Awareness Week. Many of our supporters raised vital funds in so many wonderful ways. Our Night Walks in London and Manchester kicked off the week with 400 participants raising an incredible £70,000 and counting. Lots of people also took part in Onesie Wednesday, bake sales, sky dives, sing-alongs, zumbathons and much more. This year also saw our first ever pop-up shops for World Autism Awareness Week. Seven shops across the UK opened their doors to sell a variety of handmade gifts, crafts and original artwork by autistic artists. Our current World Autism Awareness Week total stands at nearly £120,000 – and counting. Thank you to everybody who took part!

The newly-launched National Forum held its first meeting in March. Replacing the Council, the Forum consists of 40 elected candidates, each representing a UK region. It’s a place where the views of all our members are shared so they can support the charity’s board in delivering our strategy. There are vacant seats in all areas apart from London and the South. To find out how to apply for a vacancy, visit www.autism.org.uk/nationalforum. Nominations close at the end of May.

Fundraisers at one of our Night Walks for Autism

YOUR AUTISM MAGAZINE

Research in focus Bringing you news of the latest research into living and working with autism Improving access to justice for autistic people The Centre for Research in Autism and Education (CRAE) is planning to explore the experiences of autistic people who have been involved in family court proceedings.

Getting access to justice can be especially hard if you have communication difficulties.

The project aims to address the lack

of research into autistic people’s treatment by the court system or how their autism may affect their access to justice. The researchers note that while there

is some autism-specific guidance on navigating the criminal justice system, little is currently available for how to support autistic people better in the broader justice system beyond the criminal setting. The research will look at the

experiences of autistic people who have been involved with the family court, as well as the experiences of the legal professionals who have worked with them. The family court has been identified as an area where disputes may often be more emotionally fraught than in many other legal proceedings settings. The reduction in the scope of legal aid following the Legal Aid, Sentencing and Punishment of Offenders Act 2012 means litigants are also more likely to be in court without legal representation. By understanding more about

people’s experiences, the researchers hope to be able to produce recommendations for adjustments that can be made to improve the legal process for autistic people and their families.

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Dr Anna Remington at CRAE said,

“We would really like to hear from

“Access to justice is a key issue for many sectors of society, but can be particularly problematic for those with communication difficulties. This makes us think that autistic people may be at risk of encountering difficulties in the court system.” “Many aspects of the condition, such as difficulty decoding nonverbal cues, and understanding non-literal language, could result in individuals on the spectrum being taken advantage of in negotiation or dispute settings.”

anyone who has had experience dealing with autism in relation to the family courts (in any capacity).” The Centre for Research in Autism and Education is a partnership between the UCL Institute of Education (IOE), University College London, aand charity, Ambitious about Autism. ● • If you’re interested in participating in the research, or would like more information, email Dr Anna Remington at a.remington@ioe.ac.uk or call 020 7911 5361.

RESEARCH • FOCUS

The findings showed some tensions between different stakeholder groups

Looking for predictors of mental health outcomes in autism One of the largest studies of emotional and behavioural difficulties in autistic children will track the participants as they grow into adolescence in order to learn more about how and why their problems develop. Funded by the National Institute for Health Research, the Quest Follow-up study is led by Professors Emily Simonoff and Tony Charman at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London. It will build on the results of the original Quest study, which involved a cohort of 277 four to nineyear-olds with diagnoses of autism. This study found that the vast majority of families who took part said their child was experiencing emotional and behavioural difficulties, including hyperactivity and inattention, fears and worries, oppositional behaviour, sleep problems, sensory problems and self-injury. Although the

results help to establish that these problems are very common in autistic children, it is not known why some children develop more severe problems later on. The Quest Follow-up study aims to address this. Researchers will assess the cohort of children again when they reach 11-14 years and again at 14-16 years. They aim to find out more about how different factors affect each child, and how they develop from middle childhood into adolescence. Professor Emily Simonoff said, “The study will help us understand how emotional and behavioural problems persist or escalate from childhood to adolescence and will inform future interventions, allowing resources to be targeted at those at greatest risk. It will also help us understand how autism affects a child as they grow older and the impact this has on family life.” • Find out more about the study at http:// iamhealthkcl.net/ participant-information.

The researchers want to understand how autism affects children and their family lives as they grow older.

HOW SHOULD AUTISTIC CHILDREN BE TAUGHT? New research by Damian Milton at the University of Birmingham looks at the similarities and tensions between the viewpoints of different stakeholder groups on how autistic children should be educated. The research asked autistic people of differing ages, parents of autistic children and professionals and academics working in the field of autism to share their views. This involved an exercise in ranking 42 statements related to the education of autistic children, and follow-up interviews with a number of the participants. The findings showed some significant tensions between the views of the different groups. While autistic people often favoured a more radical or progressive educational ideology and social model of disability, non-autistic parents often favoured an approach more akin to ‘Positive Behavioural Support’ (PBS) and training in ‘functional skills’. The views of professionals and academics were more varied and showed preferences for a wider range of approaches. However there was more agreement over the need for good communication between staff, parents and pupils, for building more enabling environments, and for utilising the interests of learners. The research concludes by suggesting that communities of practice need to be built that fully involve autistic people, their families, and professionals, as critical friends. • The research will become freely available online in July from the University of Birmingham. For more information, email dem979@bham.ac.uk.

Find out more or get involved • Read more autism research in the Autism journal at aut.sagepub.com. Our members get a 30% subscription discount. • Could you support vital research work? Visit www.researchautism.net to find out more.

YOUR AUTISM MAGAZINE

FEATURE • FEATURE NAME

Readers to the rescue!

DO YOU HAVE A PROBLEM OUR READERS CAN SOLVE? GET IN TOUCH AND BENEFIT FROM THE EXPERIENCE OF OTHER PEOPLE LIVING AND WORKING WITH AUTISM.

For expert advice and information

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

0808 800 4104

Help me next! Getting and keeping paid work is a big problem for many autistic adults HOW DO I motivate my adult daughter to seek a job? If anyone has any ideas, I’d love to hear them! — Parent JUST KEEP trying. A friend told me about a job in Asda a year and a bit ago and I applied saying she told me about the job. Now I work there! Sometimes it helps if you know someone who works somewhere as they can

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tell you when jobs are available and it also can help you get a job when you mention their name. — Caroline MY SON is only six years old so I can’t help – but you might find the recent story about the autistic waiter up here in Manchester of interest. See bit.ly/1pODawv. — Laura THE BEST way to get your daughter into work is to find something that she’s interested in like working with animals, and maybe see if she’ll do some voluntary work for a while. This may encourage her to seek paid employment.

It’s best to be gentle or your efforts may be in vain. — Kevin Further advice: You can find practical information and activities on preparing for employment and applying for jobs in Finding work: an interactive ebook for autistic adults. Buy it at www.autism.org.uk/ finding-work.

Has anyone managed to get a disabled bus pass for someone with Asperger syndrome? My son was told “no”, as he doesn’t have a learning disability. — Parent SEND US YOUR SOLUTIONS for this issue’s problem for the chance to win a copy of Sex, Drugs & Asperger Syndrome by Luke Jackson, as featured in February’s issue.

Post your problems or answers on Facebook (www.facebook.com/YourAutism Magazine), email YourAutismMag@nas.org.uk, or write to: Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG. By writing to us with either a problem or an answer, you give consent for your contribution to be published. We reserve the right to edit submissions.

How move out do I... of home?

USE A WHOLE FAMILY APPROACH

It’s important that the whole family is involved in preparing for the moving out process and feels involved in making the new home. For some people, taking familiar belongings and possessions with them is a positive. Not only does the autistic person need to know what to expect from their new home, but everyone in the family needs to be clear about the reality of the change, how it impacts on the person leaving and on other family members. Remember, as with any young person leaving the family home, while it can be very exciting, it can also be very stressful and parents may often experiences feelings of loss.

Whether it’s into a residential home, supported living, your own place or university halls, leaving the family home is often one of the biggest steps in a person’s life. We asked an experienced professional to flag the most important things to do when preparing to move out of home. B Y K E N N Y B RY C E , N A S A R E A M A N A G E R F O R T H E N O RT H O F E N G L A N D

t only takes one day, and suddenly you’re an adult according to the law. There can be a big gap between childhood and adult life – both in terms of things like decision-making and lifestyle choices, and financial concerns, like benefits. That’s why it’s so important to start planning for the move out of home as early as possible.

CONTINUITY IS VITAL

Make sure there’s a circle of support throughout the transition into the new home, which is also involved in the development of a person-centred plan about how best to support the person. Think about who the continuous people are in the person’s life, other than their family and care manager. Very often, as children approach adulthood and into move into adult services, there is a huge gap in terms of support available. Is there an independent advocate who can be an additional support to the person and be someone they can share concerns or problems with? This is important when you move into your own environment as there may be new risks and opportunities.

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GET UP TO SPEED ON BENEFITS Far in advance of the move, get a meeting set up with a welfare benefits officer so they can advise you on what benefits you’ll be entitled to, including motability allowance as this may enable you to get your own car that you or your support worker can drive. Benefits can be tricky due to the constant changes in the systems and it’s crucial to seek professional advice. If you’re supporting someone and they have a care manager, make sure that person is on board to support with the benefit claims. When filling out the benefit forms, get support from someone with a good understanding of autism.

HOW DO I... • FEATURE

FULLY PREPARE THE NEW ENVIRONMENT Whether someone’s moving to live on their own, sharing with someone else, or moving to residential care, it’s vital that they continue to do the things they enjoy, so that there is not too much change at once. This should be a full, structured lifestyle to include employment, education, leisure, social and domestic responsibilities. Where appropriate, if someone isn’t working, it’s vital to look at what college, training or job preparation courses are available to help with moving towards independence. This helps reduce the risks of becoming withdrawn, isolated, developing low self-esteem and even mental health problems such as depression. If you’re more independent and are, for example, moving into student accommodation or your own place, people may assume you don’t need help with organising your activities and social life – but it’s so important to ask for help if you need it. In terms of the people supporting you, it’s much better if you have shared interests, so you can enjoy the same sorts of activities together.

THINK ABOUT CAPACITY AND LEGAL EXPECTATIONS Moving into adulthood means a whole new ball game legally. What a parent might have had control over for someone as a child is no longer necessarily the case in adulthood. As an adult, if there’s a disagreement between what the person wants to do, and what the parents want them to do, there should be a best-interest meeting with professionals to work it out. While a good provider will always take the family’s views into consideration, the final decision rests with the adult, who may not want to share certain aspects or information with the rest of the family. If you’re supporting someone on the autism spectrum, do they know what they’re moving to, and have they agreed to it? If they’re a tenant, do they understand the nature of their tenancy agreement and what’s expected of them in terms of their duties and responsibilities. If they do not have the capacity to understand, a best-interest meeting should be held between all relevant professionals.

PREPARE FOR THE EXPECTATIONS OF PEOPLE AROUND YOU Understanding unspoken expectations is something autistic people of all abilities struggle with – so these things need to be made really clear. If you’re living in a flat with two or three other people, for example, you might all take it in turns to clean the communal areas as part of being a good neighbour. There will also be expectations in terms of behaviour. If there will be housemates who you don’t know, think about whether or not they are suitable in advance. Compatibility is vital – if you don’t have this, you’ll have endless problems. And no-one wants to live alongside someone they don’t get on with. With the right preparation, moving out of home somewhere new can be an incredibly positive and confidence-building experience.

DO A FULL SENSORY ASSESSMENT

So often, things in the environment may be the cause for challenging behaviour or other difficulties which make settling in somewhere new really hard. If the person has sensory issues, a full sensory assessment of the new environment is a must. For example, if the flat or house has thin walls, noisy neighbours, a dog barking, if someone is living above you, next to you or below then this could be an issue if sensory profiling hasn’t been assessed. For example, one adult’s sensory issues meant even though she lived on the sixth floor, she could hear the water running through the pipes in the building every time a tap was turned on. This caused no end of anxiety for her. Inside the flat, things like where the windows are and how the sun shines in are important to consider in relation to the positioning of furniture and television to reduce reflections. The same applies to glossy surfaces like lacquered kitchen units, this may be a distraction rather than someone viewing it as a trendy kitchen.

Useful resources

• For more information about moving to adulthood, visit www.autism.org.uk/transition. • Learn more about benefits at www.autism.org.uk/benefits. • Read advice about positive risk for adults with higher support needs on pages 33-34.

YOUR AUTISM MAGAZINE

FEATURE • MY STORY

My story

Alex and the Marshalls A

Ten-year-old actor Alex Marshall is the young star of our Too Much Information film to show the public what a meltdown feels like. At the time of going to press, it had been watched over 40 million times. We asked Alex, his parents Kathryn and Ben, and his little brother Sam, to tell us about real-life meltdowns, and why the public needs to understand more about autism.

lex: “After the day of

filming, physically I felt a bit tired, but it was awesome. It was like winning the lottery twenty gazillion times. My dream is to become an actor. That’s the thing I most want to do when I’m older. And now it feels like I am the actor, it’s amazing. The fact that there were actual camera people filming it, actual actors, and a director. It felt professional and real and at the end of every take you have this amazing feeling because you’ve put everything in, and you’re so pleased, it doesn’t matter if you’ve smiled too much, or how bad it was – all that matters is that you’ve acted a take. I like making films too. In a way it’s like acting but different. It’s a good way to watch films and get to know people. It can be challenging because my first and last major production didn’t really turn out that well, lots of people didn’t really want to do it anymore, even people who had already acted in scenes – and that was a bit of a challenge for continuity. I ended up freezing production on it. I know this sounds really childish but my favourite film is probably Star Wars: Episode III: Revenge of the Sith. I watched it when I was six. I liked it then, but I watched it again when I was nine or ten and it blew me away.

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I understood the tragedy in it. I’m a Star Wars fan now. I have to watch all the films, all the episodes, I’ve got a lot of the comics and I read the books. MELTDOWNS AND WHAT THEY FEEL LIKE There are times when I need a lot of room. Sometimes this entire lounge may not be big enough. Sometimes someone brushing past means your room drops to the barest minimum. It can be as bad as someone pushing past you. I don’t fully know why I find it hard but I think an invasion of space and physical contact when I’m not expecting it and really don’t want it. Sometimes it’s not things that people do intentionally. I have this thing about babies making noise, I don’t know why. I just don’t like it. That can prove tricky because it can mean I don’t want to do something that’s planned, because the noises would mean it wouldn’t be perfect. When I’ve been upset and I was going to do something, for me, being upset will have already ruined it. And then I’ll get upset because I’ve missed my chance. And then I get more upset. So the reasons just escalate. If I go ahead and do the thing I was going to do anyway, a lot of my effort logically has to be spent on stopping me from being upset. That’s why I’ll want to wait till I’ve calmed down. I don’t want

to do something that I really enjoy to calm down, because a lot of that thing will then be wasted on stopping me being upset, and I’ll progress in the chapter of the book or in the level of the game that I like, but I won’t get the full experience. So instead, I get a comic and flick through it. I have different rules about comics as I do about lots of other things. Once you’ve read them as much as I have, they are familiar. Marvel is my favourite. There is some absolutely mind-blowing Marvel. Some are average. The thing with comics is sometimes I can find them boring sometimes I find them amazing. ADVICE FOR LIFE My advice for other people is that if you’re upset, it’s okay to storm off really angrily, but the important thing with that is the ‘off’ part. You need to remove yourself from the situation, and if there’s anything you’ve got that you can read when you’re upset to calm you down (like I have my comics), you can do that. And it’s okay to be in your room for two and a half hours doing your computer. I’d advise you not to come down till you’re fully calm and fully ready to face the day again. If it takes three hours, that’s fine. I’d also advise that if you have ideas for how people can help you to share them. Like making sure you

MY STORY • FEATURE

“It was like winning the lottery twenty gazillion times.“ – Alex

YOUR AUTISM MAGAZINE

Sam (bottom right) says, “I think it’s good that Alex is doing TMI as he is being really positive and it will help people understand more about autism.”

FEATURE • MY STORY

have the ability to stay in at play times. You don’t have to do it all the time, but to have the option is good.”

it, the more understanding we’ve got.

Kathryn and Ben:

K – Before Alex was diagnosed, things were really difficult at home and at school for a while. B – Alex would have meltdowns. I remember sometimes there would be two and a half hours of real frustration. We used to have to sit outside his bedroom door and hold the door shut because he was so upset. On holiday once the transfer coach was overloaded with people. Alex just went into complete meltdown – from the coach to queueing up for check in, it was dreadful. K – I had to lock Sam and myself in the conservatory once because we needed to get away. It was definitely challenging. Aside from that, there was the lack of understanding. I remember going on holiday with my sister and her girls and wondering why Alex wasn’t joining in so much, and pushing him to be part of the children’s group without really understanding that actually, he didn’t want to be – and seeing now that, actually, that was fine! EMBRACING THE DIAGNOSIS K – Once Alex got the diagnosis, we took the decision that we wanted to embrace it. So quite quickly afterwards we talked to Alex about it. It probably didn’t really sink in that much initially. And it probably wasn’t until we got some support from the autism support unit who went into school to talk to them a bit more about it that it did start to sink in. It’s been something that we’ve constantly talked about – we wanted it to be something that was there. And I think that’s what has made it positive. When people know more, that’s when you get more understanding and support. It probably was a relief when we actually got the diagnosis. It helped us understand why Alex was behaving the way he was and to be able to explain it to other people.

SUMMER 2016

B – And also to have an idea of what to put in place and what we needed to do at home. It also gave us something we could research and find out about in more detail. Alex is really positive himself about being autistic. And if he can be positive, then obviously we should be positive too. And our lives are easier when people understand that Alex is autistic and understand his needs. It’s probably quite a selfish thing but we want to have as easy a life as we can for him. Seeing Alex

“Some of the things he comes out with are astonishing!” – Ben blossom and hearing him talk about being autistic is brilliant because he’s absolutely fantastic. I don’t think he knows how fantastic he is when he talks about it. Some of the things he comes out with are astonishing! K – I think it’s given us much more insight into what Alex is thinking and feeling. The more Alex can talk about how he feels and what he thinks about

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ADVICE FOR OTHER PARENTS POSTDIAGNOSIS K – Reach out and get as much advice as possible. We looked at all the information on the website from The National Autistic Society which really helped. We’ve also joined the local branch. What’s great about that is that during that time when you’re so alone and so desperate, you can get advice from other parents using the branch’s Facebook page. But also people share tips about what’s worked for them and places they’ve been to which are autism-friendly, so you can get lots of different ideas about what to do. We also went to an anger management seminar – and again just meeting other parents and knowing that although everyone is different, there are other people in your situation. B – If you’re ever going anywhere on a day out, send them an email or call them in advance to see what provision they can offer you. We’ve been to places like Blackpool Pleasure Beach where we got to jump every queue. It’s also about considering things and realising there may be a reason why something you think is bad is happening, and trying work out a solution. Having a diagnosis really helped us to think about things in a different way. If it doesn’t worth, try something else but there will always be a solution I think. K – You don’t suddenly crack it – it’s constantly a learning curve, and reaching out to different resources is really important. ●

• See Alex in the Too Much Information film and join the campaign at www.autism.org.uk/tmi. • Would you like to share your story? 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.

EMPATHY • FEATURE

Anna Berry: “People are good at empathising with those who are basically quite like them.”

I feel

your pain There is a lingering stereotype that autistic people aren’t good at empathy. But many argue this couldn’t be further from the truth. We asked autistic artist Anna Berry and parent blogger Elizabeth Barrett to tell us how their experiences of empathy bust the myth.

INTRODUCTION BY AUTISTIC ACADEMIC, DR DAMIAN MILTON Embedded within diagnostic criteria for autism is the idea that autistic people have impaired social understanding. A number of psychological theories suggest autistic people have a deficit in empathising with others or in ‘theory of mind’ – the ability to imagine the thoughts and feelings of others, in order to comprehend and predict their behaviour (also called ‘mind-reading’ and ‘mentalising’). It’s certainly true that autistic people, particularly when young, can struggle to process and understand the ‘quick-fire’ social interactions which many non-autistic people take for granted. Yet to what extent do such interactions require empathy? What do we mean when we talk of empathy? Where does the ability to predict the thoughts and actions of others reside? ANNA BERRY is an autistic artist. Did any of you see the story that did the rounds on social media recently about the baby dolphin? It was unwittingly killed by a crowd of people passing it around to take selfies with it. What is interesting is

that nobody suggested this was a crowd of sadists. Or that the local sociopath society had been out for a walk. These were ordinary people; neurotypicals. Ordinary people who did something truly horrific – tortured and murdered a baby mammal. But they did it unwittingly. Therein lies the true horror of the episode: their ability to empathise with this creature was so limited that they tortured and killed it without even knowing they were doing it. It is mystifying to me that ordinary folk are held up as paragons of empathetic capability. The way we treat animals alone is ample testimony that empathy is something human beings are actually not that good at. In reality, people are good

at empathising with those who are basically quite like them. Those who have had similar experiences, and those who react in a similar way (because they are inherently similar people). Which is really a very limited capacity – and could as much be called a side-effect of narcissism as true empathy. The rich don’t empathise with the poor. Non-addicts

“How do you decide that it is those on the spectrum who lack the ability to understand the minds of the neurotypicals, and not just a case of two very different groups of people failing to understand each other?” — Anna Berry YOUR AUTISM MAGAZINE

FEATURE • EMPATHY

A sketch by Anna: ‘No Venn World: Sometimes I wish we could intersect: But we have only words’.

don’t empathise with addicts. White people don’t comprehend their privilege. And so the world turns. It all comes down to the same thing: we can’t empathise with the experience of people who aren’t like us. However ‘most people’ are supposedly better at it than those of us on the autistic spectrum (claim the scientists, the medics, the textbooks, Wikipedia…). As someone on the autistic spectrum who has no shortage of either affective or cognitive empathy, my very existence poses a problem to that theory. My own story aside, I would argue that the experiences of those on-the-spectrum, vs those not-on-the-spectrum are so different on the most basic of levels, that it is hardly surprising that ‘ne’er the twain shall meet’. How do you decide that it is those on the spectrum who lack the ability to understand the minds of the neurotypicals, and not just a case of two very different groups of people failing to understand each other? Quite clearly the current conclusion is subject to the bias of the neurotypical minds who came to it! I’d like to end with a little self-

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disclosure: empathy is a big problem for me. Just not in the way you think. When I read about the baby dolphin, I lay awake crying most of the night, consumed by the nightmare that is my experience of empathy. I could ‘feel’ the rough hands of the people passing me about. I could ‘feel’ not being able to move in air like in water. I could ‘feel’ the agony of not being with my Mum. I could ‘feel’ the incomprehension of what was happening. Writing this article I am in the same discomfort. In general, I have to avoid the news, social media, or encountering anything where I might be exposed to something bad happening to someone. My affective empathy is always in overdrive. I can somehow feel an echo of things that have never actually happened to me. A tiny grain of whatever terrible experience is happening to this other being finds its way inside of me. I resonate with it, like a crystal glass to a vibration. Trust me, I’m not boasting; it’s not an attribute – the excess of empathy renders me just as un-useful as somebody who has a deficit. But I do know for sure that if I’d been there, I’d have got that

wee dolphin back in the water and back to its Mum – no matter how many neurotypicals and their camera phones I was up against. I will pit my autistic empathy against neurotypical empathy any day of the week! ELIZABETH BARRETT is a poet and Senior Lecturer in Education at Sheffield Hallam University. Her son Dylan lives in an NAS residential setting for adults. A Native American saying reminds us not to make judgements about someone else’s world until we have ‘walked in their moccasins’. Imagining ourselves into the shoes of another person is a strategy used by creative writers and ethnographers and a method I use in my work as a poet and academic. It therefore felt natural to me to adopt a similar approach to parenting my son, Dylan, when he was diagnosed autistic. This ‘ethnographic’ approach to parenting has been particularly useful in the context of raising a child with an intellectual disability and limited communication. Since 2013 I have kept a blog reflecting on my experience of

EMPATHY • FEATURE

living with my son (who is now 22). While the majority of my posts offer a parental perspective on autism, some pieces consider the world from Dylan’s point of view. As well as attempting to see through his eyes, inhabiting Dylan’s life world has allowed me to feel the world as he might. One of the issues that I have found myself returning to repeatedly, over the years, is empathy. In one blog post I reflect on the way in which Dylan becomes involved in the lives of his favourite Disney characters to the point of feeling their (fictitious) pain. Dylan repeatedly becomes upset, for example, at the ravine scene in The Lion King where Mufasa is trampled by wildebeest. A scene in Pinocchio meanwhile, in which Dylan’s beloved puppet boy is swallowed by a whale, causes Dylan such distress he cannot watch beyond that point. Although Dylan is anxious around animals in real life, his affection for creatures in fiction suggests

“I suspect that Dylan sees deeply into me with what I have come to regard as an excess rather than a deficit of empathy.” — Elizabeth Barrett an empathic connection. In another blog post I describe how I came to make sense of Dylan’s emotional reaction to fishmonger counters. As some of Dylan’s favourite fictional creatures live in the sea, I speculate, the sight of them not swimming could be the cause of Dylan’s apparent pain. One of the aspects of the fish counter which Dylan seems to find particularly troubling is the eyes. Eyes more generally, however, can be a source of distress for Dylan. In a different blog post I describe how Dylan will scratch out, or turn around, objects or pictures

with eyes which trouble him. Like other autistic people, Dylan tends to avoid eye gaze. One of my theories is that Dylan doesn’t sustain eye contact because of his brain’s ability to ‘over-see’ – that the visual information bombarding him is physically painful. I sometimes watch Dylan flinch or look away from my eyes, after holding their gaze momentarily, and find myself wondering what it is he has seen. Did I give away, in my eyes, that I worry about the future? Or that sometimes I am scared? I suspect that Dylan sees deeply into me with what I have come to regard as an excess rather than a deficit of empathy – a connection he has forged in the absence of language perhaps. While we readily acknowledge that to be exposed is to be made vulnerable, we rarely consider the vulnerabilities of the person to whom information is revealed. Dylan appears to have a photographic gaze; if his recording of visual information is combined with an ability to ‘feel’ information, the potential for emotional overload is enormous. Looking away can, perhaps, be a form of protection from seeing too much as well as from too much being seen. ● Elizabeth with her son, Dylan

Find out more • Elizabeth Barrett blogs about living with autism at dylanandliz.wordpress.com. • You find out about Anna Berry’s work as an artist at www.annaberry.co.uk. • Do you think the public could show more empathy towards autistic people and their families? Show your support for our Too Much Information campaign for educating the public at www.autism.org.uk/tmi.

YOUR AUTISM MAGAZINE

The three Shippey boys: Mason, Owen and Callum

PARENT CAMPAIGNERS • FEATURE

Adding the

passion

Kate and Peter Shippey have three autistic boys. Last year, they successfully campaigned for a sensory room at Sunderland FC so their eldest son, Mason, could enjoy going to matches along with everyone else. We asked them how they did it.

e first heard the term autism when Mason, our eldest, was around about 18 months old – but we had no idea what it was. His other, complex medical needs took over at that point, and autism only started coming up again when he was about five. When he got the diagnosis, we didn’t think of ‘label’ as a negative. It helped us to look into it and understand him more. With our second boy, Owen, we noticed that he was showing similar traits. He’d just turned three when he had his formal diagnosis. Owen’s very sensory driven and energetic. He likes pressure on his head and bumping into things. Ultimately as long as he has routine in place, he’s a happy chappy. Mason likes to take himself away and have his own company, and gets very anxious. But Owen has no sense of danger. Then came Callum who’s now three and a half. As he grew we noticed he was delayed in development and he was two when he got his diagnosis. He’s a quiet boy and likes to sit back and watch everybody rather than join in – but he has huge meltdowns and his language isn’t fantastic so he has trouble explaining what’s bothering him. He’ll start to bang his head and that sort of thing. All three of our children have meltdowns, which cause us as parents a lot of stress. When you’re in public, maybe on holiday, and the children kick off, you get those looks from people which say, ‘You can’t control

B Y S U Z A N N E W E S T B U RY

your child’. So now we use Makaton with the boys to help them focus and to show other people that we have a particular difficulty. When other people see you using Makaton, that’s when their eyes drop and they stop giving you flack. Our advice for other parents would be to learn from your child. I find a lot of times with progression and development, you just need to let them do it at their own pace. Watch your child so you can start to learn what’s bothering them, and to understand their

“If you stick with it, there’s nothing better than seeing your child able to take part.” triggers. Once you figure these things out it makes for a much easier life. With the campaign, it all started when we took Mason to a match a couple of years ago, which he was desperate to attend. We tried to prepare him with ear defenders, but it soon became clear he couldn’t cope. We thought that was the end of that. But he was still so keen to watch it on TV at home. So we tried again, and this time stayed inside the bar. But he still couldn’t cope and it seemed pointless to be there anyway just to watch it on a TV! That’s when we came up with the

idea of a sensory room. The club asked us to do some research locally to see who’d be keen for it. It took a lot of hard work and campaigning, gathering support and signatures and using social media. Eventually around a year later, they built the box inside one of the bars for three people plus their carers. The room has a bubble tube and padded matting, a PECS board, a television, and they’re going to put in a football-based tactile wall this summer, hopefully. We’re now trying to get the idea into the premier league and beyond. It’s progressing nicely. It’s wonderful to be able to help so many other people as well as Mason. It’s great when you see other families enjoying the match from the sensory room. The football club has been fantastic and really helpful. It took a lot of persuading and we had to get the Equality Act involved. But they listened. Parents make good campaigners for things like this because they are in touch with the difficulties their children are facing, and they can add passion. You have all the positive feeling and strength to make it happen. A lot of parents feel quite downtrodden. You have to fight for everything and you get really exhausted. But if you stick with it, there’s nothing better than seeing your child able to take part. Keep your children in your mind, knowing that you’re making things better for them and others like them. ● • Find out more about the campaign at www.theshippeycampaign.com.

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TOM MORGAN • INTERVIEW

Star of pitch

and screen Semi-professional rugby player Tom Morgan hit the limelight last year after appearing on Channel 4’s The Undateables. We caught up with him and his mum, Elaine, to find out about his journey so far and what rugby means to him. B Y F LY N N H A G E RT Y

Tom achieved 750 dips in one hour last year to raise funds for our charity

hen Tom Morgan appeared on Channel 4’s The Undateables, his goals were modest. “I wanted to raise awareness and show the real me,” says Tom. “I went down the road of The Undateables to show other people in the same situation what it’s like and to try and give them some confidence as well.” Tom was diagnosed with Asperger syndrome at the age of 21. The 26-year-old rugby player from Bridgend, Wales, also has Tourette’s syndrome, ADHD, dyslexia and dyspraxia. Tom didn’t just raise awareness – he went viral. He gained over 20,000 new Twitter followers, was the subject of articles from nearly every major national newspaper,

and made several appearances on ITV’s Loose Women. Tweets poured in from viewers who thought Tom was plenty dateable, thank you very much, and some even wondered how he could be on a show about people with disabilities. “Even as a toddler, I knew there was something there, but I couldn’t put my finger on it,” recalls Tom’s mum Elaine, an office manager in the NHS. Tom’s beloved grandfather, Cyril died on his fifth birthday, and Tom was heartbroken. He took to running away, forcing Elaine and Tom’s father Phil to lock his bedroom window to keep him in the house. He could be moody and difficult. “Looking back on it, he was definitely depressed,” explains Elaine. Like many children with

“When it came to sport, I was like a different person, and playing rugby made school easier”

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INTERVIEW • TOM MORGAN

undiagnosed disabilities, school was a struggle for Tom. “I found it hard to work and concentrate in the classroom,” he says. Tom wasn’t interested in homework apart from geography, where he had a supportive teacher, and sport. “I wasn’t naughty but boisterous and quite frustrated as I didn’t know what was happening,” he remembered.

When Tom got his diagnosis he felt it was spot on

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Teachers told Elaine that they felt Tom had some sort of disability, but they just couldn’t figure out what. “And GPs were not very knowledgeable,” says Elaine. Tom had friends, but he didn’t always fit in. As a boy, he would often come back to sit with his family after rugby games rather than run around the clubhouse like his teammates. Tom went to a Catholic secondary school, and he wasn’t happy. “Tom just didn’t want to go back to school after Christmas in Year 9. He was freaking out, because he hated school – it was strict and I was forever being called up,” says Elaine. One way Tom would relax was by visiting a neighbour’s farm with his dad and brother, where he had a special bond with a rescued pit pony. “They had a little pony called Charlie, who was a bit of a rogue. He was really difficult to get into the stables at night, but Tom would whistle and he’d follow Tom,” recalls Elaine. “He was an animal version of me – quite rebellious at times!” jokes Tom. Tom would get up early in the morning to clean the stables, and later looked after a second horse named Buster. “I really enjoyed it – I wouldn’t mind having another horse in the future!” says Tom. GROWING UP The other way Tom would relax was playing rugby. He first picked up a rugby ball aged three and played youth rugby for Bridgend Athletic, one of the most famous Welsh junior clubs. He remembers watching the British Lions beat South Africa in the local rugby club with his dad, and feeling inspired. “When it came to sport, I was like a different person, and playing rugby made school easier,”

he says. After a few phone calls, Elaine was able to get Tom a place at Brynteg School. Brynteg was more to Tom’s liking, as many of his friends from his rugby team, as well as his younger brother Matthew went there too. After years of struggle with GPs and child psychologists, Tom was finally diagnosed with Tourette’s syndrome at the age of 15. “When he was diagnosed, that changed everything. The school was really brilliant and pulled out all the stops to support Tom, which made life a lot easier,” says Elaine. As Tom got older, life became more difficult again. He got too old for children’s mental health services and battled to find the right medication. “After school it was up and down. He’d go on medication and come off it because he thought he could cope without them. He was at that stage of life,” says Elaine. From 19 to 21, he could only access a GP. Elaine had to fight for specialist help, and Tom was diagnosed with Asperger syndrome, dyspraxia and dyslexia at the age of 21. “When I was diagnosed, it really added up,” explains Tom. “What the doctor was talking about was exactly what I was going through. I did more research and it hit the nail on the head.” Throughout his struggle, Tom continued to excel on the rugby pitch. Bridgend Athletic won a national youth cup – which Tom ranks as his proudest on-field memory – and he played for Swansea and Bridgend. Another of Tom’s proudest memories is watching his brother play for Wales. Matthew won his first cap in South Africa in 2014 and Tom likes to think he played a role in Matthew’s success. “When I was younger and before I was diagnosed, I was quite aggressive. Once, I even dragged him through a bush of stinging nettles! I like to say I trained him up so he’s battle hardened. He’s

TOM MORGAN • INTERVIEW

“I used to try and hide having Asperger syndrome, but I wish I didn’t. Good coaches know how to treat players differently.”

Tom plays semiprofessional rugby for the South Wales Scorpions

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INTERVIEW • TOM MORGAN

Tom is thankful for the support of his parents, Elaine and Phil

been through a lot growing up, worse than anything on the rugby field,” says Tom with a laugh. Today, the brothers train together at the gym. Tom watches as many of Matthew’s games as possible, although he prefers to do so at home. “When I get into crowds, I’m a bit on edge and uncomfortable, and I don’t enjoy it as much as I would at home,” says Tom. He finds stadiums difficult, and when Tom went to watch Matthew play for Wales in the Rugby World Cup, an excited supporter made Tom grind his teeth. “There’s all the shouting, and when Tom watches a match, he likes to concentrate. Somebody was sitting in front and was yelling, and Tom wanted to tell her to be quiet! Tom likes to speak out, but sometimes you have to be clever and watch what you say or do. Trying to understand that sometimes can be difficult for Tom,” says Elaine. He chose to watch the rest of the World Cup at home. Tom now plays for the South Wales Scorpions, a rugby league club in the Kingstone Press League One. As a semi-professional rugby player, Tom has to take his autism into account when playing. “I used to try and hide having Asperger syndrome, but I wish I didn’t. Good coaches know how to treat players differently and will see that, but you need to be open,” he observes. HELPING OTHERS With his burgeoning on-pitch career and a new sense of self (Tom was also recently diagnosed with ADHD), Tom signed up for The Undateables. The positive response has only increased his confidence. “I’m still the same person I was before, and I’m trying to keep my feet on the floor and stay humble. But I feel more free,” says Tom. Although his date didn’t work out, Tom’s confident he’ll find someone – when he has the time. “I’m quite busy with everything, so I’m

SUMMER 2016

“My mum has stuck by me and I really appreciate that.” waiting for it all to settle down!” he says with a laugh. Tom will be participating in our Too Much Information campaign, and is going to become a National Autistic Society Cymru Ambassador. He is also keen on starting an initiative to help teach autistic children team sports, introducing them to an environment he’s come to treasure over the years, and feels knowledgeable coaches are vital. “I like a coach who is straightforward, and doesn’t overload me with too much information,” says Tom. He now plays centre in both rugby league and union, a position

that allows him to express himself and not get too caught up in processing information. “I had a trial with Bristol as an openside flanker and fretted and struggled with lineouts,” says Tom. Phil and Elaine are proud of Tom’s growth. “Tom’s matured a lot over the last year and with everything out in the open due to the TV programme, he’s handling everything so much better,” says Elaine. “This time last year, you’d say it was a different Tom. Obviously he’s going to come into situations where he’ll lack confidence or need guidance, but there’s so many things over the last couple of months that he’s been able to handle that he wouldn’t have last year.” Tom concludes, “When I was growing up, I put my family through a lot of trouble. My mum and dad have stuck by me and I really appreciate that, it must have been quite hard. They’re really supportive and I’m quite lucky to have that.” ●

Find out more • Read more from Tom about rugby – advice, best memories and watching his brother play – at Your Autism Extra. Sign in at www.autism.org.uk/ registration/login and then go to www.autism.org.uk/digitalyam. • Tom has been helping us with our Active for Autism training for sports professionals. Find out more at www.autism.org.uk/activeforautism. • To put your name on our Too Much information map to highlight the difficulties people like Tom face in public places, go to www.autism.org.uk/TMI.

ADVICE • POSITIVE RISK Sometimes being too risk-averse can mean autistic adults miss out on positive experiences.

What is positive risk? Positive risk is about allowing autistic adults to take calculated risks, knowing that they may make the ‘wrong’ decision sometimes, to have the chance of improving the quality and variety of their lives. B Y H A N N A H B A R N E T T, H E A D O F A D U LT S E R V I C E S , T H E N AT I O N A L A U T I S T I C SOCIETY

istorically, the institutional model of adult care has been very risk averse. But nowadays there is more emphasis on giving people access to the same experiences as others their age, wherever appropriate and safe. In our adult services, we work with people for whom choosing to try orange over their usual blackcurrant squash is a big challenge. There’s a chance that if they don’t like the orange flavour, the glass will get thrown on the floor and there could be a safety risk for others with bits of broken glass around, as well as potential upset and unquenched thirst for the person. However, they might like the orange squash, and therefore by trying it, they will have increased their options for what to have next time, and broadened their experience of drinks. Weighing up the risks Clearly what you define as appropriate

and safe is the central point. There is an obvious difference, for example, between allowing someone to jump into a cold pool on a not particularly warm day in summer, and allowing someone to lean out of the window of a moving train. Everyone is different, has different needs and may have a different understanding of the risks involved in a particular action. It’s necessary to weigh up the risk against potential benefit, and make an informed decision about whether that person has the capacity to understand the risk, and that they have had it fully explained to them, before taking it. Part of this is about considering the worst-case scenario, and taking steps to minimise the risk without taking away the potential benefit. Part of it is about communication, and helping the person to be fully informed of the risk they are taking. Some ways in which the risk could be mitigated in the squash

YOUR AUTISM MAGAZINE

ADVICE • POSITIVE RISK

Explaining the risks to the person in a way they understand is vital

example would be to serve it in a plastic cup, in a place where there aren’t lots of people around who could get splashed, and where an alternative activity which the person enjoys can be accessed in case the experience upsets them. Having a spare drink you know they like on hand would be a good idea too. Who makes the decision? The Mental Capacity Act 2005 provides a statutory framework to empower and protect vulnerable people who need support or are not able to make or communicate their own decisions. It makes it clear who can take decisions, in which situations, and how they should go about this. There are five key rules or principles of the Act. • Every adult has the capacity to make their own decisions until it is shown that they can’t. • A person must be given support to help them make decisions. • Nobody should be stopped from making a decision just because others may think it is unwise. • If a decision is made for a person who lacks capacity, it should be in their best interests. • When anything is done or decided for a person without capacity, it must be the least restrictive of his/her rights and freedoms. Tricky areas When it comes to positive risk-taking, particularly difficult areas include drinking alcohol, smoking, diet and gambling, such as buying a lottery

“In cases when a person does understand the risks, preventing them from taking part in something they want to do could be against their rights.”

SUMMER 2016

“Everyone is different, has different needs and may have a different understanding of the risks involved in a particular action.”

ticket. In cases when the person doesn’t fully understand the risks involved in these activities, allowing them to take part in them could mean they cause harm to themselves in ways they didn’t or were unable to anticipate. Often, someone’s parents may feel that it’s their responsibility to stop someone from doing something which they don’t approve of, or feel would be harmful. However, in cases when a person does understand the risks, preventing them from taking part in something they want to do could be against their rights. The most important thing is to understand that everybody is an individual, and may have capacity to make decisions in some areas but not in others. It’s also vital to think about the worse-case scenario and to take steps to mitigate the risk as much as possible, without compromising that person’s experience of something new, if that’s what they want. ●

Find out more You can download a short, guide to The Mental Capacity Act 2005 at www.autism.org.uk/ mentalcapacityact

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ABA Therapy myths and misconceptions

ABA (APPLIED MYTH 3: ABA programmes need Analyst (BCBA) credential personcentred, antecedent-based strategies to to motivate BABEHAVIOUR (APPLIED BEHAVIOURBehaviour ANALYSIS) ANALYSIS) THERAPY is a scientific is the gold standard within the field of be 40 hours a week to be effective change. It is important to clarify “punishment” is a technical THERAPY is a scientific approach to approach to the understanding Research has found that intensive ABA, and as such, it is recommended term in ABA thatABA differs from everyday the understanding of programme and improvement of behaviour. Itand is improvement implemented moreconceptions. than 20 that any ABA is overseen outcome-focused with anItemphasis on hours perinweek, in life, designed by a BCBA. 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ABA misunderstandings surrounding the used aversives (or punishments) to A soundly designed treatment programme that is functionmisunderstandings surrounding the discipline of ABA so you therapy is often delivered in the home, discipline of ABA so you can make an decrease problem behaviour, 21st should not rely on families any useneed of punishment. caninformed make andecision informed decision when a method of onbased therefore to be cautious when choosing a choosing century ABA focuses personthat the programme is not impacting methodfor ofyour treatment your loved one. centred, antecedent-based strategies treatment lovedfor one. on their life by appearing invasive. to motivate change. MYTH 3: ABA PROGRAMMES NEED TO BE 40 However, a well-run programme MYTH 1: ABA is unregulated It is important to clarify MYTH 1: ABA to ISbeUNREGULATED HOURS TO be BEless EFFECTIVE that might “intensive” in terms It is important aware that ABA “punishment” is a technical term A WEEK of number of hours per can still only effective implemented ABA that everyday has found It is is important to be ifaware that ABA is only in effective if differs fromResearch that intensive ABAweek, implemented more achieve change correctly. Unfortunately, until very until very conceptions. procedures implemented correctly. Unfortunately, recently,Punishment than 20 hours per week,socially begunsignificant early in life, priorthat to the age recently, the field of ABA had been in ABA refer to strategies designed to makes meaningful improvements to a the field of ABA had been unregulated in much of the world, of four, produces large gains in development and reduces unregulated in much of the world, so decrease the likelihood of a behaviour young person’s and their family’s life. so that couldclaim claimtotobe beananABA ABA practitioner, thatanyone anyone could occurring inbut the future. the need for special services later in life1. Such intensive Hopefully thisimpractical has ironed and out some is changing. Withholding/delaying this practitioner, is changing.but Thethis Behaviour Analyst Certification Board packages, however, can be expensive. ABA common uncertainties you may have The Behaviour Analyst reinforcement, reducing amount of (BACB), which oversees the field of ABA, has documented therapy is often delivered in the home, therefore families had around ABA therapy. Certification Board (BACB), which time spent on activities, etc., are bestoversees practicethe andfield ethical standards, and has introduced need to be cautiousIfthat programme notmore impacting youthe would like to findisout of ABA, has simple but effective punishment about ABA, or howHowever, Beam canahelp documented bestand practice and ethicalThe procedures that may beon used bylife by appearing formal qualifications accreditations. BACB exists their invasive. well-run with autism, standards,analysts and has introduced formal practitioners. for behaviour to register as certified practitioners. programme thatsomeone might beyou lessknow “intensive” in terms of number please get in touch. qualifications and accreditations. 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by a BCBA.

Beam and not the NAS. some common uncertainties you may have had around ABA therapy. If you would like to find out more about ABA, or how Beam can help someone you know with autism, MYTH 2: ABA USES PUNISHMENT TO please ABA get in touch. CONTROL BEHAVIOUR Beam ABA Services deliver flexible, collaborative and outcome-focused While it is true that ABA programmes theautism 1950sand other behavioural programmes forsome children and young adultsin with 1 and Theiraversives services are available in London, South West andneeds. 60s used (orcurrently punishments) to decrease http://www.ctfeat.org/articles/smith99.htm The views Manchester with more locations rolling out soon. problem behaviour, 21st century ABA focuses on expressed in the article are of Beam and not the NAS. beamABA.com 020 3457 0539 contact@beamaba.com @BeamABAServices

Beam ABA Services deliver flexible, collaborative and outcome-focused ABA programmes for children and young adults with autism and other behavioural needs. Their services are currently available in London, South West and Manchester with more locations rolling out soon. beamABA.com | 020 3457 0539 contact@beamaba.com | @BeamABAServices

ADVICE • STAYING ACTIVE

Staying active for better mental health Summer’s around the corner and we all know that exercise is good for us. But it can be hard to find the activity which is right for you or your child. We talked to a professional and a parent about the work they do to provide opportunities for getting active to autistic young people and adults. BY ELEANOR WHEELER

ORALIE HOPWOOD is a Community Health Worker at The Mind and Body Project Sheffield MIND, which aims to improve the physical and mental wellbeing and reduce the social isolation of vulnerable people living in deprived communities in Sheffield – including those on the autism spectrum. Why is getting active so good for you? I was going to say it gives you space to think. But actually I think what it gives people is space not to think. A lot of mental ill-health is driven by control processes or very complicated, tangled anxiety and stresses which can build and build. Something which engages your physical senses and your concentration – whether it’s going outside and looking at the trees and the horizon, and the sense of your muscles working, or responding to music – draws you into your physical body. This can help you to give your

brain a bit of a rest, and helps to bring down your levels of stress and anxiety. Being outside also means access to fresh air and sunlight, which is good for your brain. For autistic people, another benefit of getting into an open, green space is the reduction in artificial sensory stimuli in and around buildings or in more urban or populated environments. Things like flickering lights, people banging up and down corridors, doors clicking, and central heating. Being somewhere outside and secluded helps turn the dial right down.

What are the barriers stopping autistic people from getting active? We find that access is the main thing. That is, physically getting somewhere to do something active with other people. Another barrier is lack of confidence and not being made to feel welcome. If you are vulnerable, a bit unfit or a bit older, accessing mainstream physical activities can be difficult and intimidating. It can be hard to know what to do, and how to deal with the new people you’ll meet at a class or session. Many of the people we work with have not had access to exercise since

“Having a less competitive structure to the physical activity takes away that risk of challenging behaviour which might arise as a result.”

— Coralie Hopwood

YOUR AUTISM MAGAZINE

ADVICE • STAYING ACTIVE

“Unfortunately, most people find it difficult to know what to say and how to be around people with disabilities.”

— Michelle Guite

school. It can be a surprise for people when there is no competitive element and they are not being graded. That’s what puts a lot of people off – the sense of being judged by their performance and that they might not be good enough. Competition can also be a really overwhelming thing for autistic children and some can find it very difficult to be in an activity when there has to be a winner or a loser, and accepting that they can’t always be the winner. What about if you’re dyspraxic? Music-based activities are really good for that because there’s no right or wrong way of doing things – it’s just about responding to the music, which is much more accessible. It’s also thinking creatively about what exercise can be. We worked with a teenager who was reluctant to go outside because of the dirt and mud. But once he was out and in control of his own activities to a degree, he just wanted to dig. He could just keep digging because that’s what he wanted to do. He’d been excluded from school and was having a really tough time, but found that very therapeutic – and good exercise. MICHELLE GUITE has an autistic son with learning disabilities, and is one of the founders of All Inc pan-disability trampolining club, set up by a group of mothers, in Sheffield. They offer sessions to any young person with a disability and their siblings. Why is physical exercise so important for mental health? As we all know endorphins are released when we exercise. The autistic young people who attend our group often

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have a lot of unspent energy, and pacing and charging about is a common sight. After bouncing on the trampoline, they often seem calmer and happier and can be seen smiling in mid-air. When the young person has been trying out a move and achieves it, you can see their sense of happiness written large across their faces. That feeling is one felt by athletes across all abilities from amateur to elite, and it’s so great that you want to do some more exercise to feel it again. Trampolining is unique in that it allows you that sense of being free, even if it is just for a few seconds in mid-air. Often our young autistic people talk about coming to their sessions all week, until they can be back up in the air. How do you make trampolining accessible for autistic people? Where possible, we let the young person take the lead, meaning that sometimes they will enter the hall, look at the trampolining equipment, and then leave. Sometimes they may take a long time checking out their surroundings and the other people. Gradually they will decide for themselves if they would like to have a go. We’ve found that over time everyone learns to take instruction, whether that be verbal or non-verbal. Our lead coaches have completed their disability bolt-on course for coaching, designed by British Gymnastics. They know techniques and devise new ones, such as mirroring, to coach each person. There have been many occasions when someone whom the parent thought would never learn a move has done so. The shift in attitude by the parent has sometimes been life-changing. In one case, it led to a young person becoming continent because the

Doing excersie can be a way of socialising, as well as being good for your health parent realised that they could take instruction when they had thought this to be impossible. Many tears flowed on that day. We also have access to a sensory room, and one trampoline which is specifically for young autistic people with learning disabilities. Only two people are allowed on here at one time, meaning that turntaking is shorter. Our volunteers also play games between goes, and the coaches get hints and tips from parents and carers for how to get the best responses. What would you say to someone who’s autistic and has never liked exercise but wants to start? Give something new, like trampolining, a go. You may find you like it. If you don’t, try something else. Your health is important and staying active allows you to have a better quality of life. More

ADVICE • STAYING ACTIVE

Physical activity can take many forms – from team games, to dance, to walking

importantly, going to an activity club or regular session can be a good way of meeting people and making friends. I think the key to building good exercise patterns is actually finding somewhere where you feel comfortable, with people you feel happy with. Do you think mainstream exercise classes and activities are accessible enough to autistic people? The more public awareness of the varied difficulties that people with a disability are likely to face, the better the potential for integration. There is very poor understanding of autism in general. People are often are visibly embarrassed by a persons’ behaviour and look in the opposite direction – or may even say disparaging things to their parent or carer openly. We need more integration in schools to expose people, at a young age, to what it’s like to have a disability. We used to share the hall with a

mainstream trampolining group and would often find that attitudes changed over time as we remained positive and supportive, inviting people to meet our group and occasionally to have a go alongside our young people. This allows people to find out for themselves what disability actually means. What do you personally find rewarding about being involved? Initially it was a place for me to go with

my son and get help from other parents with things like school transitions and statementing processes. Now I have the privilege of witnessing, time and again, someone coming to the session for the first time, often with challenging behaviour and with a parent at their side desperately apologising for their behaviour. I get to see them months down the line, taking turns and listening to instructions, altogether a calmer and happier young person – all through the power of sport. ●

Useful websites and resources • Find out more about the Sheffield Mind and Body Project at www.sheffieldmind.co.uk/services/sheffield-mind-and-body-project • Follow All Inc Trampolining on Facebook at www.facebook.com/AllIncTrampolining • Search for services near you at www.autism.org.uk/directory. • Find out more about our Active for Autism training at www.autism.org.uk/active.

YOUR AUTISM MAGAZINE

Connecting with others who are going through the same thing as you can be a great support.

Spotlight on parent to parent support

How the NAS can help you One of the best ways of getting support as a parent is by connecting with others in a similar position so you can share advice, moral support and even make new friends. Here are our top ways of connecting with other parents.

arent to parent service Parent to Parent (P2P) is a confidential telephone support service run by and for parents and carers of autistic children and adults. Call 0808 800 4106, leave a message and a trained volunteer will call you back as soon as possible, or complete the online enquiry form at www.autism. org.uk/p2pform. One parent said, “To talk to another parent, who not only understood, but who is also ‘neutral’ made an immense difference. I feel hopeful and capable instead of useless and overwhelmed.” Volunteer branches Our branches are often run by parents of autistic children. Our branches offer information and family support through activities from coffee mornings to cinema trips. We have 115 branches and groups across the UK, each providing unique support to local families. One parent branch member told us, “Advice from parents and carers in similar situations offers support that often no one else can give”.

AGM and family day Our members’ Annual General Meeting and family day provides a relaxed atmosphere for autistic people and their families. It often has specialist workshops on topics such as ageing and school exclusion. We provide an affordable, autismfriendly experience with autism training for venue staff and lowsensory arrangements. A visitor last year said it was refreshing that “Children were made to feel welcome for who they are”.

“Advice from parents and carers in similar situations offers support that often no one else can give.”

Family-friendly fundraising activities Our most popular family-friendly fundraising event is All Aboard for Autism, a Thomas & Friends themed sponsored walk. Families get free tickets to Drayton Manor Theme Park, home of Thomas Land, a chance to meet the Fat Controller and to complete a treasure hunt! One participant said, “I’d recommend it to anyone who might think taking their kid to a theme park would be overwhelming, it was very relaxed”. All Aboard for Autism 2016 is on 24 September. Find out more at www.autism.org.uk/allaboard. Social media Parents can use our Social Media channels like Facebook and Twitter to connect with others in the same situation and share experiences. Engaging can can help you to feel part of a community from the convenience of home, and you can find out about events where you could meet other parents face to face. Visit www.facebook.com/ NationalAutisticSociety and https://twitter.com/autism.

Did you know?

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

YOUR AUTISM MAGAZINE

RESOURCES

Giveaways

In a different key: the story of autism AUTHOR: John Donvan and Caren Zucker PUBLISHER: Allen Lane PRICE: £19.99 VERDICT: Well-researched, thorough and fast-paced, this book is likely to appeal to those with a particular interest in autism history. THIS BOOK starts and ends with Donald Triplett, the first child diagnosed as autistic by Leo Kanner. For Triplett, the importance of living and growing in a caring community shines through. Yet the book goes on to show that many others had far worse experiences, taking us through the abuses of Bettleheim and Lovaas, various controversies, and factions within the US autism movements. Few players in the history of autism seem to come off well, but the strength and ambition of parents to make positive change is celebrated. In contrast to both Adam Fienstein’s and Steve Silberman’s histories, Hans Asperger is portrayed as a Nazi here, implicated in euthanasia. It would be unfortunate if this controversy distracts from his work and legacy. Finally, the conflict described between the neurodiversity movement and parent groups leaves the reader concerned for the future.

Reviewed by Carol Povey, Director of the Centre for Autism, The National Autistic Society

We have a Textured Mr Tumble toy from Golden Bear Toys to give away! Mr Tumble stimulates senses with textured fabrics, a mirror hidden in his spotty bag, lights behind the stars on his waistcoat and shoes for practising tying laces. For your chance to win him, tell us about your or your child’s sensory differences and how they affect your life. Email YourAutismMag@nas. org.uk by 17 June 2016. The winner of last issue’s competition to win a set of books for young people from Jessica Kingsley Publishers is Tracey from County Armagh. Well done, Tracey! To win a £28 Stories4Life gift card for creating a personalized audio gift, email yourautismmag@nas.org.uk with your name by 17 June 2016. The winner will be announced in the next issue.

To order books recommended by The National Autistic Society, visit www.autism.org.uk/amazon

Our six favourite… ‘judgey’ faces AS PART OF our Too Much Information (TMI) campaign, we’ve been asking celebrities to show us their best ‘judgey’ face – that nasty look of judgment that makes life worse for autistic people and families – before putting it away for good. We’d love to see yours, too! POST THEM ON...

Facebook, Twitter: using #JudgeyFace or email us at yourautismmag@autism.org.uk.

SUMMER 2016

ALAN GARDINER, garden designer and TV personality

ARLENE PHILLIPS, former dancer, choreographer, and TV star

RESOURCES

Being autistic: nine adults share their journeys from discovery to acceptance

Pathological demand avoidance syndrome: my daughter is not naughty

AUTHOR: Various, edited by Caroline Hearst

AUTHOR: Jane Alison Sherwin

Publisher: AutAngel (www.autangel.org.uk)

PUBLISHER: Jessica Kingsley Publishers

PRICE: £5.00

PRICE: £12.99

VERDICT: An absolutely brilliant book, with each contributor

helping you to learn something more about autism. I HAVE MIXED feelings about autobiographical accounts of autism, I know that they can be incredibly powerful resources. However they can also be filled with facts about a person which sometimes means readers don’t always see the bigger picture or overall message. But this is absolutely brilliant. Its short length is a big positive, because many people reading a book like this will come to it during a time where they are being bombarded with information, and have many of their own emotions to contend with. The book doesn’t push one particular view. It covers really important topics like relationships, being diagnosed when you’re older, and children on the spectrum. The lovely illustrations are very emotive and really add something, too. Reviewed by Robyn Steward, specialist autism consultant, trainer and author

VERDICT: A helpful and well-structured introduction to PDA

I WAS ATTRACTED to reviewing this book as I had some awareness of PDA but little real understanding of it. I found it provided practical advice, underpinned by an understanding of how PDA may impact the person, in a very easy reading style. Also the list of websites and other resources are potentially very useful. The layout of the contents allowed me to read sections in the order I needed, and although there was some repetition, this may help the reader to understand a very difficult disorder. The author’s feelings of frustration will certainly resonate with parents of children with PDA and autism. Reviewed by Seema and Ifty Islam, National Autistic Society volunteers

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

RICK EDWARDS, TV presenter

GRAYSON PERRY, artist

FRANCES BOULLE, Entrepreneur, author and TV personality

JANE ASHER, actress, author, entrepreneur and our charity’s president.

YOUR AUTISM MAGAZINE

STEVE SMITH

“Being in the circus has brought out the best in me.”

I’m a… circus worker! Steve (25) discovered the circus and hasn’t looked back! He as Asperger syndrome and ADHD.

TEVE SMITH was diagnosed with ADHD and Asperger syndrome when he was eight. “I don’t really remember the diagnosis”, he says. “I just remember my mother being really upset, and wondering what was wrong. I found out when I picked up a booklet she’d been given explaining it. Then everything fell into place and I felt as if questions had been answered. Because I knew even being young that I was ‘different’ from other children.” Steve’s childhood wasn’t easy. Although he felt well supported by his parents and elder sister, socialising was difficult. When he got to secondary school, he decided not to accept any more ‘official’ extra help. “I wanted to achieve on my own. It was hard, but I progressed through and ended up leaving with quite good grades compared to the predictions”. Steve’s life changed when he met his now fiancée, who does an aerial sphere act in Circus Starr. “She explained she was from the circus. I decided to try it out and I’ve never looked back.” Steve assists in the build ups and pull downs of the tent, with moving logistics (driving an HGV lorry), and he’s the ringboy which means bringing in props, controlling his fiancée’s winch and dancing in the ring. The job requires a lot of moving around the

UK. Steve says, “I really enjoy the travelling. I’m surprised how much I love it to be honest but I really do. I find the rest of the staff are great to get along with and are very understanding.” It’s not always easy though. Steve finds he can get very anxious, but has coping strategies in place for when he can feel himself becoming overwhelmed. “My ADHD also means I have to control my anger and hyperactivity myself. I was on medication but I came of it by myself at the age of 20. “Being autistic gives me strengths as well, though. It makes me headstrong and means I don’t give up on anything. So even if I do things wrong, I will try again. Doing this job has been the only time I’ve felt that I can try again and not to put myself down.” His plans for the future are to continue with what he’s doing and for one day to perform in the ring. “I’d like to do a motorbike act one day as I love bikes”, he says. “My advice would be to believe in yourself, no matter how much you put yourself down normally. And to do something you enjoy doing. For me, it’s being creative and active – and in the circus I get that all rolled into one. I can thank my family for being there through the hard times. I strongly believe if you have the right people and family by your side, you can achieve what you want.” ●

• Circus Starr is a not-for-profit touring circus. Their Show and Tell app won the our Professional Award for Best Technological Innovation last year. Learn more at www.circus-starr.org.uk. • If you are autistic or know someone on the autism spectrum who is doing something amazing, we’d love to hear about it. Email yourautismmag@nas.org.uk.

SUMMER 2016