Your Autism Magazine - Autumn 2015 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE

Digital version available now!

VOL 49 – NO 3 • AUTUMN 2015

My story

GEORGE THE POET AND ELLA CARMEN GREENHILL Artists inspired by their brothers

Life with twin teenage boys who are completely different

GETTING THE SCIENCE OUT THERE Steve Silberman on autism’s hidden history

ALSO IN THIS ISSUE: ARE YOU BEING BULLIED? EDUCATION TRIBUNALS PREPARING FOR OLD AGE

“It’s the

little wins...” The Autistic Gardener on plants, people and life in general

Autumn 2015 EDITOR Eleanor Wheeler WRITERS Heidi Aho, 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 Ten Alps Publishing 13th Floor, Portland House Bressenden Place London SW1E 5BH Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@tenalps.com www.tenalps.com

SUBSCRIPTIONS Only available to NAS members C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 membership@nas.org.uk DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Eclipse Colour Tel: 01536 483401 F RO N T C OV E R © SL Digital www.sldigital.co.uk The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine 2015 Autumn Vol 49, No 3 The National Autistic Society ISSN 2055-0413 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of the NAS. In the interest of providing the widest possible range of information to readers, we may include details of some of the many approaches to autism now available. However, this does not imply NAS endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that the NAS endorses or supports the groups or individuals running the website, nor does the absence of a website imply that the NAS does not endorse or support the group or individual running the website.

elcome to Your Autism Magazine! I hope you enjoy the star-spangled issue we have in store for you this season. As well as Alan Gardner, the aptly-named presenter of Channel 4’s The Autistic Gardener, we hear from spoken-word artist George the Poet and playwright Ella Carmen Greenhill about having brothers who are on the autism spectrum. In addition, renowned US journalist Steve Silberman tells us about uncovering the social history of autism. I hope you find something relevant among the advice pieces, whether you’re a parent or carer planning for care or education, or a young person looking for advice on recognising bullying. Don’t forget you can now read your magazine online at www.autism.org.uk/digitalYAM. Enjoy the rest of your summer!

Contents 04 News 10 Research in focus 13 Readers to the rescue 14 How do I... prepare for old age? 16 Feature: My story 21 Feature: Artistic siblings 25 Interview: Steve Silberman 28 Feature: Alan Gardner 33 Advice: Education tribunals 37 Advice: Spotting bullying 41 Spotlight on support: Brokerage Services 44 Resources 46 We… represented Finland for Eurovision!

Eleanor Wheeler EDITOR

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37 YOUR AUTISM MAGAZINE

News

A round-up of the stories that affect you Autistic adults play their part in politics

See how people responded on our Facebook, Twitter and Community

Major research into describing autism published You may remember reading about a piece of research into the language used by autism communities to describe autism in the spring issue of Your Autism Magazine. The full research paper by the NAS, the Royal College of GPs and the UCL Institute of Education has now been published in the Autism journal and is available to read for free online. The findings confirmed that there is no single term that everyone prefers. However, they suggest a shift towards more positive and assertive language, particularly among autistic communities where autism is seen as integral to the person. We know that language is

Autumn 2015

important because it embodies and can therefore help change attitudes towards autism. To reflect the findings of this research, the NAS will gradually increase the use of the term ‘autistic’ – particularly when talking about and to adults in that group. We will also use ‘on the autism spectrum’ as a default description. The research shows that views on language are evolving and we will continue to research into changing preferences. Read the full research and listen to a podcast at www.autism.org.uk/ describingautism. Read other people’s comments on the findings and share your thoughts on Facebook or Twitter (@autism) on the hashtag #describeautism.

Earlier this year, three autistic adults from the NAS Horizons day service in Godalming attended their local hustings in south-west Surrey and grilled local political candidates on autism issues prior to the General Election. Richard Wilsdon, Kevin Roche and Charlie Wooll quizzed candidates on what they would do to improve services for people with autism. They were supported by NAS staff before the event to put together and rehearse their questions, which helped raise awareness of the issues people with autism face by explaining how the condition affects their lives. Kevin asked, “I was only diagnosed with Asperger syndrome at 18. It would have really helped me to have had an earlier diagnosis. What would you do to improve diagnostic services for autism?” A lively debate followed in which Kevin highlighted the difficulties he faces due to his late diagnosis. Richard brought up the issue of low pay for care staff and the increasing pressures on the social care system. Afterwards, Kevin said, “You don’t have to have a degree in politics to make up your own mind.” Richard added, “It helped me decide who to vote for.”

Richard and Kevin with a BBC reporter at the hustings

AUTUMN 2015 • NEWS

News in brief New guidance for parents on accessing childcare

People with PDA may require a lot of support

PDA RECOGNISED AS PART OF THE AUTISM SPECTRUM The NAS has updated its guidance about autism to reflect the fact that Pathological Demand Avoidance (PDA) is now considered to be part of the autism spectrum. Experts hope this development will mean there will be better understanding of PDA and what the best strategies may be for helping individuals to reach their potential. Autism Information Officer, Maria Watkins said, “For those struggling to get a diagnosis, this will hopefully mean that professionals will take parents’

concerns more seriously.” People with PDA share difficulties with others on the autism spectrum in social aspects of interaction, communication and imagination. However, the central difficulty is the way they are driven to avoid demands and expectations, thought to come from an anxiety-based need to be in control. For more information about PDA go to www.autism. org.uk/pda.

DREAM COMES TRUE FOR WORD GAME FAN An autistic man from Worcestershire with a love of words had his birthday wish granted this summer when Seiko UK sourced a discontinued word computer for his collection. Jack McQuaid (23) collects word games and electronic word computers. When his Wordwizard broke, Jack was desperate to replace it. His keyworker Mike couldn’t find one online, so he contacted the distributor, Seiko UK. Seiko invited Jack to visit their

A new guide was launched last month to help parents with disabled children aged 2-4 seek redress if the childcare system fails them. The guide by legal experts Irwin Mitchell and a coalition of children’s charities explains parents’ rights around the Government’s free early education offer and advises on challenging decisions which deny access to it. Read the guide at bit.ly/cafamily-report. Share your experience at bit.ly/childcare-survey.

Work experience for autistic adults at new Hoylands House shop NAS service Hoylands House in South Yorkshire has opened a new shop stocked with products made and grown by autistic adults. Open to the public, products on sale include plants, hand-made soaps, candles, cards, jams, chutneys, wrapping paper, gift tags, fudge and bird boxes. The shop will also provide work experience to young people in local NAS services. Find out more at www.autism.org.uk/ hoylands-house.

First NAS free school opens doors

offices, see their watch showroom and receive a new Wordwizard and a birthday cake! “Jack had a brilliant time and thoroughly enjoyed himself,” said Mike.

Thames Valley School in Reading was officially opened on 3 June by HRH The Countess of Wessex. After a tour of the school, the Countess met with groups of students and viewed their new Innovation Hub, part of a joint initiative between Fujitsu and Intel to help students and teachers develop their digital skills. Learn more about the school at www.thamesvalleyschool.org.uk.

All Aboard for Autism

We’re giving out free tickets to Drayton Manor Theme Park, home of Thomas Land, to any adult who raises £25 or more, and any child who raises £20 or more, for our All Aboard for Autism 3km sponsored walk on 26 September! Find out more at www.autism.org.uk/allaboard.

YOUR AUTISM MAGAZINE

NEWS • AUTUMN 2015

A talented illustrator: Ryan at work

DREAM JOB FOR ILLUSTRATOR A man from Cranleigh has secured his dream job as an illustrator. Ryan Medlock – who happens to be autistic – struggled to find work for years after he graduated, despite having a first class honours degree in illustration and a masters degree in children’s book illustration. He was referred to Surrey Choices EmployAbility, a service which helps adults with autism or a learning, physical or sensory disability to find work placements, training, volunteer opportunities and paid work. Through the service, Ryan secured various freelance illustration work, including creating a series of animations for an activities programme for younger people for Surrey Choices. Employment support officer, Jessica Williams said that while Ryan was a talented illustrator, his autism meant that he sometimes needed help communicating with his employers. “I attend meetings with him and write up notes to ensure he understands what has been asked of him,” she said. “We have also been able to help him to attend a job club. It’s great to see him happy and enjoying a job he’s always dreamed of doing – and getting paid for it too.”

To find out more about Surrey Choices EmployAbility call 01483 806806.

New interactive art project launched Autistic artist Jon Adams has produced a new UK-wide, digital art project to celebrate 800 years since the sealing of the Magna Carta. Commissioned by the Speaker’s Art Fund and Arts Council England, Democracy Street aims to engage the public in the generation of a digital interactive map, based on streets named after famous people and events that have contributed to the history of democracy in the UK. Jon explained, “People can write poetry, take photos and make artwork about their streets, then upload them using the app. I will make maps from what people find, which will go on show in Parliament and elsewhere. It will be a democratic artwork. Everyone who joins in is helping me

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produce the maps. “It’s a catalyst for people to discover more about where they live. There is also a gaming element – people can hunt down roads, and they can win badges for finding them.” Find out more and take part at democracystreet.com.

CARERS CALL FOR MORE GOVERNMENT SUPPORT A new survey by the charity Carers UK has revealed the extent of the difficulties faced by many carers in the UK today. Published earlier this summer, the survey showed that 84% of carers feel more stressed because of their caring responsibilities, and many say their role has a negative impact on their health, relationships and sleep. Forty-one per cent say they are cutting back on essentials like food and heating, and full-time carers are twice as likely to be in bad health as non-carers. One carer who completed the survey said, “I’m mentally exhausted and depressed, very isolated and lonely.” Heléna Herklots, Chief Executive of Carers UK, said, “We are calling on the Government to take active steps towards making carers a priority over the next Parliament to ensure that all carers have reason to be optimistic.” www.carersuk.org.

Congratulations to Becky Glover and Warren Holmar for their amazing fundraising efforts this year. Becky set up a fundraising page following her campaign to get her brother Alex’s Facebook account re-instated when it was blocked for breaching their rules earlier this year. Warren, who is on the spectrum, has cycled across America to raise awareness and funds for the NAS. Well done and thank you!

One of Jon’s map artworks: Alternative map of Belfast

Star fundraisers Becky and Warren

AUTUMN 2015 • NEWS

FIRST EVER MIXED ABILITY RUGBY WORLD CUP The first world championship for mixed-ability rugby will take place this month at Bradford and Bingley RUFC. Mixed-ability rugby, which includes both disabled and ablebodied players, started in Wales over 20 years ago. Pioneering club Llanelli Warriors have used the services of captain John Horwood, who has autism and a learning disability, ever since. The Bumbles are England’s first mixed-ability club, formed in 2008 after a young man with cerebral palsy and learning disabilities decided he wanted to play rugby and couldn’t find a team. Today the Bumbles have 40 players. One of their stars is Jack Swanley, a speedy winger with autism. “Jack originally found it difficult socially, but he’s our most-improved player

ART COMPETITION FOR PEOPLE WITH AUTISM LAUNCHED

A Bumbles vs Llanelli match and feels surrounded by peers when he sits in the bar after a match,” says Bumbles manager Mark Goodwin. The growth of mixed-ability rugby prompted the organisation of a world championship with teams from ten countries. “This is an opportunity to showcase what we’re doing, and we’re looking for support for our growing movement,” says Bumbles coach Martino Corazza. The world championship is free, and the Bumbles are looking for volunteers. Find out more at www.mixedabilitysports.org.

Our You Need to Know Campaign in 2010 found that a high percentage of teenagers and young adults with autism are needlessly developing mental health issues. As a result, we’ve launched a new mental-health early-intervention programme for families of primary aged children with autism. Find out more at www.autism.org.uk/healthyminds.

SCHOOLBOY SETS UP SCHOOL INCLUSION PROGRAMME A schoolboy has set up a games club for children with autism and other complex needs at his school. Anthony Malcolm, who is in Primary 6 at St. Patrick’s RC Primary School in Scotland, submitted a proposal for the weekly lunch time club to his head teacher. He wrote that he wanted children from the school’s Enhanced Provision Unit to “feel special and important”. Anthony asks the children what they want to play each week and prepares in advance, even bringing in his own Lego! His schoolmates Lewis and Liam, who both have autism, help Anthony’s initiative impressed his teachers run the club.

A new national art competition for people on the autism spectrum has been launched by charity Creative Future. The theme is ‘art and technology’ and entrants are invited to show how these two things can be combined to create show-stopping artworks in any medium. Finalists will be exhibited at Autech 2015 in Manchester this October. Find out more about how to enter at www. autech2015.co.uk/creativefuture.

AUTISM AWARENESS POLAR BEAR TRAVELS THE WORLD At nine years old, Dorian (now 11) who has autism, set out to raise autism awareness with the help of his teddy, Tikko. Tikko travels around the world with his supporters, sharing information about autism and the support available in the areas he visits. This month, he hopes to visit Egypt, Easter Island, New Zealand and Argentina. Read more or donate to Dorian’s specialist autism school fees at www.tikko.ca. Tikko and Dorian are spreading autism awareness

YOUR AUTISM MAGAZINE

Research in focus Bringing you news of the latest research into living and working with autism Animation’s role in improving emotion recognition in children with autism leads to new brain activity study

The Transporters combines trains with expressive faces

Research by Cambridge University has shown that a children’s DVD helps to improve the ability of children on the autism spectrum to recognise emotions. Further research aims to discover more about brain activity around the process. The Transporters is a children’s animation in which all the characters in the four-minute episodes are vehicles, such as trams, cable-cars, trains and tractors. It’s very popular with many children with autism who tend to love toy trains and other vehicles that move predictably along tracks. Funded by the UK Government in 2007, The Transporters DVD was originally distributed for free to 40,000 families with a child with autism under the age of eight by The National Autistic Society. Now, recent research by the Autism Research Centre (ARC) at Cambridge University led by Professor Simon Baron-Cohen has shown that watching the DVD for just 15 minutes a day over a one-month period leads to significant improvement in emotion recognition in children on the autism spectrum. Why should watching cartoons about vehicles improve emotion recognition? Well, the researchers designed the films so that the animated vehicles have the faces

AUTUMN 2015

of human actors grafted onto the front of them, expressing one of 15 key emotions in each of the episodes. Whilst the child with autism or Asperger syndrome may be attracted by the mechanical aspects of the vehicle – the wheels or the train itself going round and round – they are being exposed to faces with emotional expressions. This is social information that they might otherwise choose to avoid looking at. Even without realizing it, young children with autism seem to be picking up this important social information and are learning how such emotions fit into the context of a social story. The ARC is now engaged in a new study, in collaboration with UCL, which involves measuring the child’s brain activity before and after they have watched The Transporters. The researchers want to see whether the improvement in emotion recognition is accompanied by a more typical electrophysiological response during face-perception. ●

• If you are interested in your child taking part in the testing for the next phase of research in London, email Dr Helen O’Reilly at sejjheo@ucl.ac.uk. • You can buy The Transporters at www.autism.org.uk/transporters. All profits will be shared between the Autism Research Trust (ART) and The National Autistic Society.

research • Focus

Graphics of shoals of fish were used in the study

Motion perception study helps explain sensory overload A new study into how children on the autism spectrum perceive dynamic information differently sheds light on reasons why sensory overload may occur. Research by former CRAE PhD student Dr Catherine Manning shows that children with autism are better at combining information about moving objects than their peers, which may explain why they sometimes experience an overloading of their senses. Thirty three autistic and thirty three typically developing children aged between six and 13 years old took part in the project. They were asked to judge if a shoal of fish, represented by dots, was moving on average towards a red or a green reef. Children on the autism spectrum were better at working out the overall direction of dots when they moved in different directions. They did not show the same enhancement, however, when they had to ignore dots

moving in random directions. These results suggest that children with autism can combine dynamic information well but may not always know which information to combine and which information to ignore. Dr Manning said, “Being able to combine information can be advantageous, as it helps us quickly get an overall sense of our surroundings. If children with autism are taking in and combining more motion information than typical children, this may leave them feeling overwhelmed. A better understanding of these sensory differences may in turn help us to develop interventions for children with autism.” Read the full paper at www.jneurosci.org/ content/35/18/6979.

Making it fair for child witnesses with autism A joint study by researchers at City University London and the University of Winchester aims to find out how best to support child witnesses with autism. Children on the autism spectrum often have difficulties with remembering events or recognising faces. They may also struggle to hold conversations or make eye contact. Taken together, these characteristics could call into question their abilities as criminal witnesses. However, while children with autism recall less information about events than neurotypical children, research has shown that the information they do recall is just as accurate. This study aims to find out more about how children with autism fare at different stages of a criminal investigation: when interviewed, when asked to select faces in a line-up, and when challenged about their evidence by a barrister. As part of the project, the researchers will also evaluate a number of different techniques used to support vulnerable witnesses, to see which are most effective for children on the spectrum. Want to take part? If you have a six to 10-year-old with a diagnosis of high-functioning autism or Asperger syndrome and live in or around London, the researchers would like to hear from you. Email lucy.henry.1@city.ac.uk or go to www.childwitnesses.com.

Find out more or get involved • Read more autism research in the Autism journal at aut.sagepub.com. NAS members get a 30% subscription discount. •C ould you support vital research work? Visit www.researchautism.net to find out about current and upcoming projects.

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

Readers to the rescue!

Do you have a problem our readers can solve? Get in touch and benefit from the experience of other people living and working with autism.

For expert advice and information

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

Money management is a useful life skill

0808 800 4104

I want to help my daughter to learn to use a basic budget. Can anyone offer any tips on introducing money management? — Anna I have opened a goHenry bank account for my son. It’s excellent. — Erika Editorial note: GoHenry is a family banking tool which consists of a prepaid debit card with parental controls. More information is available at www.gohenry.co.uk.

Nationwide building society have a cash-cardonly account for 11 years and up. — Jenny Editorial note: The Nationwide FlexOne account is a basic account for young people aged 11-17. There is an option for a cash card only, which allows the account holder to withdraw cash but not make card payments in shops or online. Find out more at www.nationwide. co.uk/flexone. Other high-street banks offer similar products.

Further NAS advice: There is a guide to managing money written by people with autism on our website. This includes information on budgeting – including planner templates for you to download, advice on choosing and using bank accounts, saving, insurance, borrowing and debt, and your rights around money management. Go to www.autism.org. uk/managingmoney. If you want to talk to other parents or autistic adults about managing money, you can use our Parent to Parent service (0808 800 4106), go online to our community (community.autism. org.uk) and create a new discussion, or post on Facebook (YourAutismMagazine or NationalAutistic Society) or Twitter (@autism). We’ll be publishing an online training module for people on the autism spectrum on managing money next year, with the support of MoneySuperMarket. Keep an eye on our website for updates.

Help me next!

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

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

YOUR AUTISM MAGAZINE

How prepare do I?

for old age

The first generation of people diagnosed with autism in childhood are now reaching middle age. We asked two of our expert service managers for advice on what parents and carers of adults who have autism and more complex needs should consider when helping to prepare someone for later life. BY SUSANNE LARCOMME AND AMY THORNE

etting older and the prospect of old age means preparing for major transition. It can be useful to think of this change as sets of macro transitions and micro transitions. The first category might include changes to housing provision or the death of supporting family members. The second might be more medical appointments or changes to activities due to a decline in health.

BE AWARE THAT CHANGE CAN BE HARD AND WILL AFFECT PEOPLE DIFFERENTLY A typical transition for a person with more complex autism is six to 18 months, from the start to a point at which they feel settled. Sometimes there is a ‘honeymoon’ period immediately after a change when things might appear to be fine. But this may in fact be processing time for the person and the reaction may not appear until later. Don’t expect transition to be easier because a person is older. Change can be positive, but it’s important not to underestimate how it may affect the individual and to plan any change carefully in conjunction with the person’s circle of support. Be aware that historical, challenging behaviours may resurface as a result of major change. Many people will develop relatively settled routines as young adults which then continue as they get older. An established routine may mean a reduction in challenging behaviours and long periods of stability, meaning a decision is made to move the person into different living arrangements or to reduce their medication. But the trauma of transition might mean they revert back to behaviour they were doing when they were younger.

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BE ALERT TO DETERIORATION IN PHYSICAL HEALTH

When it comes to health, there are several aspects of getting older which may be more problematic for an autistic adult with complex needs. Difficulty with communication might mean signs of common ageing-related illnesses are missed, for example when telling a doctor about pain. Some people may have very high pain thresholds which could result in something not being picked up until it’s really serious. Regular and thorough health checks are therefore vital. Specific checks which take place as you get older – such as mammograms – can be hard to communicate, so use social stories and visual support to help explain them in advance. Work with the relevant professionals to make sure special allowances are in place. Changes to mobility might make a person’s preferred stimming activity harder or impossible to do. Have strategies in place to gradually transfer the form of the stimming into one which is more suitable to their change in health. It’s also always important to continue to encourage fitness and not let people become too sedentary.

HOW DO I? • FEATURE

USE GENERAL EXPERTISE AROUND CARING FOR THE ELDERLY

Not a lot of research has yet been done into ageing in autism. However, there is a lot of information and expertise available around caring for the ageing and the elderly in general and how you can improve quality of life. A lot of general advice is also applicable to older autistic people. For example, the importance of accessing activities, having a peer group, being given information in a suitable format and having opportunities to talk and express themselves. Professionals working in elderly care homes will be experts in supporting older people with tools like memory boxes and reminiscence therapy. It may be helpful to seek out specific advice, for example if a person needs to get dentures, find out how a professional in elderly care would go about communicating this. Although it may need adapting, there could be information there that’s really useful. Many professionals will have worked with older people on the spectrum who may simply never have been diagnosed. It is always vital to remember that every individual is different; you will know your person best.

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GET A STRONG SUPPORT STRUCTURE IN PLACE

Make sure your person has a really comprehensive personcentred plan. Think about how to manage big changes in order to make them as undisruptive as possible. For example, if elderly parents have regularly taken their child on holiday but it is increasingly becoming a struggle, see if their care service can organize the holiday instead. The parents would still go, but a carer would be there to help. Start thinking about big changes years in advance. For example, if parents will eventually need to downsize, making visits home for the person impossible, start gradually reducing them and increasing different types of visits in the years before.

PREPARE FOR THE LOSS OF LOVED ONES

It’s important not to shield the person too much from bereavement and death. If parents are getting ill, they may want to stop their child seeing them to protect them. But this will make their death much harder to deal with as it will be a shock. To be able to process such big change, it is better to plan regular visits to the ill parent so the person has seen the decline with their own eyes and is able to develop that reasoning about what’s happening. Saying someone who is dead ‘went away’ or ‘went to sleep’ can lead to anxiety and misunderstanding. For parents and carers, the worry of what will happen to their person when they’re gone can be overwhelming. Make plans to support your person financially in your will or by setting up a trust. The NAS has specific guidance on how to do this (see resources).

SOURCE END-OF-LIFE CARE There is some evidence to show that people with autism and complex needs tend not to live as long as other people so end-of-life care preparation needs to start earlier. To plan for an individual’s care as they move towards the end of their life, source an end-of-life team through your community nurse. They should link you up with a team straight away. The team should then work with you to plan visits to the person at home or in the care setting supporting them. It’s important the team gets to know the individual, but sometimes this might be tough as there may be little time available. Therefore it’s vital that the person’s circle of support offers information to the team – including an extensive care plan – before they meet.

Useful resources

• Ageing with autism: a handbook for care and support professionals is an in-depth guide for professionals who are working every day with ageing people with autism and their families. Buy the handbook at www.autism.org.uk/ageing-with-autism-handbook. There is also an e-version speciﬁcally for clinicians and health professionals. Download it for free at www.autism.org.uk/ageing-with-autism-health-profs. • Contact our Autism and Ageing Advice Service at advice40plus@nas.org.uk, or visit www.autism.org.uk/ageingadvice • For more information about ageing and autism, go to www.autism.org.uk/ageing

YOUR AUTISM MAGAZINE

MY STORY • FEATURE

Nikki with her twins, Harry (left) and David (right)

My story

chalk cheese

Nikki’s twin boys, David and Harry, both have autism, but couldn’t be more different from one another. She tells us about parenting such diverse characters and gives tips on surviving the tricky teenage years.

am the happy, albeit rather tired, parent of twin 16-yearold boys with autism. Our journey is similar to that of many parents who engage in life on the spectrum. That is, a long road of ups and downs, transient professionals, tears and giggles. David was diagnosed first, at four years old. A few months after starting his new nursery, the assistant handed him over at the end of the session with the charming and supportive comment ‘your son has special needs’. We went home; I cried and then phoned the health visitor. This was the beginning of our journey that has so far involved two paediatricians, six educational psychologists, six speech and language therapists, two clinical psychologists, two clinical psychiatrists and seven CAMHS professionals, two occupational therapists and a variety of other specialists that work with us on his additional non-autism related issues. Sadly, looking back, all of the markers for autism were present, we just didn’t know about them. David had delays in meeting his developmental milestones; he was late to sit, late to walk, late to speak. He was under the care of the hospital for ongoing health issues but the community paediatrician sent us on our way when he was just

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under a year old with a ‘He’s fine and will soon catch up’. Before autism entered our world, the extent of our knowledge lay in that much-cited film Rain Man. Needless to say we did not have a card counting, savant, toddler version of Dustin Hoffman. Like most parents, after David was diagnosed, I launched straight into feelings of guilt and failure. I was overwhelmed by what this meant for my son’s future. I spent 24 hours being very upset before I launched into practical mode, looking for knowledge, intervention and ways to move forward. David has a lengthy list of issues including dyspraxia, speech and language difficulties, epilepsy and a visual processing disorder. So we are now very practised at this. It was a further four years before Harry was diagnosed with highfunctioning autism and ADHD. We worked alongside our lovely paediatrician for around three years before committing to the diagnosis. This, I guess, highlights the differences between the boys. Harry’s issues are, perhaps more pervasive, but much more subtle. He is the social seeker to his brother’s withdrawal; the talker to his brother’s silence; and most of all he enjoys being a blend of ‘Just William’

and ‘Dennis the Menace’. The boys have, and always will be, chalk and cheese. It has been quite a challenge to parent such diverse characters. David would sit and look at books or a single toy for extended periods of time, slept well, fed well but has been poorly periodically since birth. Harry was the complete opposite. He was quick to talk, walk, run, abscond and explore; far more tiring! GETTING HELP Most help has come from local charities such as Disability Challengers in Surrey, Dreadnought in Cornwall and The National Autistic Society. The boys both attended after school clubs provided by the NAS, which were a lifeline for them, providing social opportunities without the stress of inclusion. In addition, The Children with Special Needs Foundation funded me to study autism through the University of Birmingham. This was a huge help in understanding the needs of the boys and allowing me to support other families on this journey, both through the NAS Surrey Branch and independently. One of our toughest periods was during the Twin Aims project at the Institute of Psychiatry. During an interview, David announced that he

“Harry and David are like yin and yang; together they make a whole.”

YOUR AUTISM MAGAZINE

“We use humour a lot! We give space when needed and talk or hug as required.”

Harry and David at home wanted to die. You couldn’t have asked for better support. We were whisked over to the Maudsley and David was supported by both a clinical psychologist and clinical psychiatrist. The net result: David had Post Traumatic Stress Disorder (PTSD) from an incident at school when he was strangled by another pupil. We had no idea. His learning needs were such that, although he felt that he wanted to die, he was unable to plan how to achieve this. Fortunately, he also loved his family too much to leave us. Following this, we actively supported the NAS ‘You Need to Know’ campaign to raise awareness of mental health issues experienced by those on the spectrum. TEENAGE LIFE The teenage years are proving to be interesting. The autistic behaviours remain but are further enhanced with typical teenage door slams and cries of ‘it’s so unfair’. Mostly we view these bouts as successes; milestones that they have reached rather than missed. However, the drive to pull away from us and become independent is tricky for both as this requires a strong circle of friends and a great deal of social know how. We are lucky to be able to say both are excelling. They are building friendships that may very well be lifelong. They are developing strategies to overcome challenges and both are enjoying new experiences, including sailing, farming, trips to Belgium, and weekends away at cadet camp. We honestly couldn’t be more

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proud of them. We have moments when it all becomes a bit overwhelming or patience wears a little thin. We use humour a lot! We give space when needed and talk or hug as required. As parents we love unconditionally but with boundaries. Our sons are equally supportive of us. We do a lot together as a family and also do things individually with the boys such as Sailability and walking. Tim and I are masters of tag parenting. When one is under pressure the other steps in. We talk and try to encourage each other to pursue hobbies and take breaks when needed. Harry attends mainstream college with support and plans to continue in education. He is fabulous with other children, especially those with additional needs. He would make a great mentor. We can see him in an outdoor role, perhaps involved in forestry or outdoor education. I think we will wait to see what he feels pulled to and then try to create the opportunities for him. David is much more complex. He attends the area resource base as he can’t access mainstream. Currently he’s recovering from an unexplained incident in

Share your story

October and has lost some key skills. He would like to be a blogger or games designer so we are planning on writing a blog together and will see where this takes him. We want them to be as happy as possible really but the future is not easy to anticipate. David’s best quality is his never ending optimism in the face of physical and emotional difficulties, his ability to be polite even during rebellion and his empathy for others. With Harry it’s his enthusiasm for life; even when he is low, his loyalty and his ability to pick himself up and keep trying despite the obstacles he faces. David and Harry are great friends and always have been. They are like yin and yang; together they make a whole. They have different strengths and support each other when needed. They laugh together but are very honest with each other. They have a twin sense of mischief and work well as a team. My advice for other parents is to network. Learn as much as you are able to, be as patient as you can but remember that this is not a sprint but a marathon. You can only ever do your best and that is enough. Look after yourselves so that you can keep on looking after your amazing children. My tip would be to keep a journal or a happiness jar. Whenever something unexpected or wonderful happens, no matter how small, write it down. On a low day, you can make some time to look back and cherish how much has been achieved. ●

• Would you like to share your story? Please email YourAutismMag@nas.org.uk or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, and we may feature you in a future issue. • Interested in research about autism risk in siblings? Read about a major project on the subject at www.staars.org.

GEORGE THE POET / ELLA CARMEN GREENHILL • FEATURE

There from the

George says knowledge of autism is now part of his common sense

very start Spoken-word artist George the Poet and playwright Ella Carmen Greenhill both have brothers on the autism spectrum. They told us about how their creative work and motivation has grown in part from their understanding of autism and their love for their siblings.

GEORGE THE POET is a star of British street-level poetry. From an inner-city upbringing in northwest London, he went on to study at Cambridge and was nominated for the Critic’s Choice Award at the 2015 Brit Awards. His little brother, Kenny, is on the autism spectrum. I was aware of autism before my brother was diagnosed, but after that happened I learned more and I came to understand that he’s not any less intelligent than me or less capable – his brain just works differently. Kenny owns the ‘label’ confidently because he’s aware of what it means and he’s in a position to represent it fairly. We learned to understand the social implications of autism growing up: that Kenny might tend to shy away from big crowds, that some of the banter we use might be taken differently, that we might need to be more considerate in the things we say and the way we communicate with him. I’m keen to provide representation for all the things that I understand, that are often misunderstood. My brother has given me a window into the world of autism and the way

different brains can work. I want to share that in layman’s terms and make it very understandable and relatable to my audience. We’re both really proud of each other. Kenny has a very circumspect understanding of the world. He’s considered and confident. He’s been through a journey: going through specialist school and then reintegrating into mainstream education is something that has really informed his understanding of himself and the world around him. I’ve made knowledge of autism part of my common sense. So I’m aware of how far society has to go in order to do the same. Because it will not happen passively. We do not passively have an affinity for these conversations, and therefore it would be complacent of us to assume that society will just evolve without us being proactive. I’m concerned that the cuts will

Ella thinks exploring autism in the arts can help people to see things in new ways

YOUR AUTISM MAGAZINE

Feature • GEORGE THE POET / ELLA CARMEN GREENHILL

“My brother has given me a window into the world of autism and the way different brains can work” — George the Poet

not only lead to a lack of provision for those that need it, but that they will encourage an erosion of social attitudes towards disability. The message that’s coming out is that they are not priority. So it is our responsibility – us, with the understanding and with the awareness – to fight not only for the services for those affected, but for the social progress, for the changing attitudes in the long term that the whole country will benefit from. It’s about representation. When people can represent on their own terms, they’re able to contribute to the world and the world will then factor in autism. I do think we’ve got a bit of a way to go in terms of making understanding of autism common sense – but it can be done. What I say to all of those young people out there who may be feeling down about their future is this: you

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are the only one with your fingerprint. Your job is to figure out why. That’s why it’s lonely. Because it’s only you that has that fingerprint, it’s only you that has your set of characteristics – so be confident in who you are. Because that is what the world needs. The world doesn’t need another Nelson Mandela, it needs you – because Nelson was just being himself. Ella Carmen Greenhill’s latest play, Plastic Figurines, toured the UK this year. In the play, a young woman and her autistic brother are suddenly brought together when their mum is diagnosed with leukaemia. Ella’s half-brother has autism, and she feels the play has brought them closer together. At the start of the play, Rose doesn’t really know much about Mikey’s

George’s poetry puts complex, misunderstood issues into layman’s terms

needs or how independent he is. She has to get to know who he has become as an adult. Likewise, Mikey also has to learn how to deal with his sister and adapt to the sudden change in their family’s circumstances. Their mum has always been the calm go-between – but they have to start coming to terms with what they will do when she’s not there. The play is also about grieving and how the process varies for Rose and Mikey. Although it might not always seem like it to Rose, Mikey is grieving – he feels a loss and that something is missing. But he isn’t drawn to the social conventions around loss in the same way as his sister. For example, there’s a point when Rose wants to light a candle for their mum, but Mikey doesn’t understand the point. My mum passed away when I was 21. Although my family’s experience was my inspiration for the play, the

GEORGE THE POET / ELLA CARMEN GREENHILL • FEATURE

“I love his honesty and that he can only be himself.” — Ella Carmen Greenhill she’d felt growing up. Every family is different and some families have a lot of anger. But from my experience, the frustrations come from a place of love for that sibling and love for the family. I hope the play makes people think and talk to each other about their own lives. It’s really valuable to be exposed to people who’ve had similar experiences to you and actually to those who’ve had completely different ones, too. I remember watching a couple in the audience in Derby who kept giving each other these little knowing glances during the performance as if they recognised a

lot of what was happening onstage. I also really wanted to engage young carers in the areas that the play toured to, because it’s important for people to see themselves reflected in the things they go to see. I don’t think experiences around living with autism are explored enough and I think there should be a lot more in more media. The most important thing is having those characters there on TV, in plays and films – but the show not being primarily about autism. That’s the progression that needs to be made now, in my opinion. This is normal life for so many people! I wanted to show the loveliness and the beauty of it. The stuff that Mikey is able to offer to Rose isn’t all about her learning about his condition – but about her learning to see things in a new way. ●

©Lucas Smith

actual events are not what happened to us. My half-brother was diagnosed at the age of three and we were told he’d never speak, never leave home, never be out of nappies. He’s just got his first proper job now; I’m so very proud of him. When we were younger, there wasn’t much attention to go around between him, our other two brothers and me. That’s not wrong, but it can be tough. As we’ve got older there have been new challenges, as he went through college and then searched for a job. Even though at times this has been difficult, we are really close and we support each other. I love his honesty and that he can only be himself. For Plastic Figurines, I did a lot of research and talked to other families. One parent I spoke to has two grown-up daughters, one of whom has autism. It took her other daughter until she was in her thirties to be able to express the frustration

Remmie Milner as Rose and Jamie Samuel as Mikey in Ella Carmen Greenhill’s Plastic Figurines

Find out more • George the Poet is touring the UK this autumn. Find out more at www.iamgeorgethepoet.co.uk. His first collection of poetry, Search Party, is available now from www.autism.org.uk/amazon. • View photos and videos from Plastic Figurines at boxoftrickstheatre.co.uk/production/plastic-figurines.

YOUR AUTISM MAGAZINE

STEVE SILBERMAN • INTERVIEW

A history

worth knowing

Award-winning US investigative reporter Steve Silberman has spent five years uncovering how knowledge about autism has developed over the past century for his new book, Neurotribes. We caught up with him to learn more about what he discovered and how it transfers to improving the lives of people living with autism today. BY ELEANOR WHEELER

expressing their fullest potential. Does the public need a deeper understanding of autism in order to accept it, or is it more about promoting a general attitude of tolerance? Not everyone has time to learn indepth about autism and we shouldn’t expect that. But at least if people have an attitude of acceptance and celebration of every child’s potential, then superficial judgements that are so difficult and traumatising for families and adults to bear, will be lessened. One of the stories in my book that really touched me and impressed upon me the importance of a positive attitude is that shortly after Rain Man came out in the late 1980s, the screen writer Barry Morrow got a letter from a woman in Australia. She’d been in a supermarket and her kid had had a meltdown. Every parent of an autistic child understands how horrible it is to be judged in that situation. This mother saw another shopper giving her a bad look, so she asked the

woman if she’d ever seen Rain Man. She then replied directly to the child, “Oh, you’re like Raymond Babbit! I understand!” So the woman’s attitude completely changed. Even though all she knew about autism was having seen that movie, it meant she had a human context for understanding the child’s behaviour. Do we need more autistic representations in the media? When Rain Man came out, it was a completely ground-breaking thing for an autistic character to be the star of a Hollywood movie. It’s easy to underestimate how progressive it was for its time. However, we definitely need more living examples of autism at all stages of life and in many different ways of self-expression. We need more examples of nonspeaking autistic people

“Understanding autism is also about recognising the true nature of human intelligence, which is that profound gifts can coincide with profound disability.” YOUR AUTISM MAGAZINE

To what extent does our understanding of autism come from social history rather than scientific research? Society’s view of autism is heavily informed by the assumptions people make about autistic people that come from things which happened in the past, which no one even remembers. For instance, we now know that echolalia is one of the distinctive ways that autistic people learn to speak. For a long time though, practitioners dubbed it “silly talk” and condemned it as something that autistic kids needed to be punished – sometimes brutally – for doing. That’s exactly wrong. This incorrect view of echolalia came from mistaken or misguided research in the 1970s that suggested that echolalia was inhibiting learning. In fact, it accelerates it. When we understand what happened in the past, we can better appreciate the potential of autistic people. We can better evaluate services and therapies and other ways of guiding autistic people towards

INTERVIEW • STEVE SILBERMAN

Steve says society needs a broader model for the acceptance and inclusion of autism

who communicate through keyboards or technology; we need more autistic women in the public eye; we need more non-white autistic people in the public eye. Because the widespread public notion of autism is still quite limited to a couple of examples. There’s always a danger that individual autistic traits will be branded as universal. When Temple Grandin wrote about her thought process as very visual and as being like “thinking in pictures”, it was a very valuable insight – but then a thousand newspaper stories came out declaring that all autistic people think in pictures. That’s the danger of not having enough public examples, because then assumptions get made about how all autistic people are. One thing which became very clear to me while I was doing my research and talking to dozens of people on the spectrum is that autistic people are more different to one another than neurotypical people are. In my experience, the autism spectrum is broader than the neurotypical spectrum! Do you think tensions which exist between different parts of the autism community are healthy or counterproductive? I think there’s a tremendous amount of regrettable in-fighting between various segments of the autism community. It drains energy away that would be better directed towards promoting acceptance of autistic people and building the community and helping people to support one

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another. All the different segments of the community need each other to move forward. Parents need selfadvocates, and self-advocates need parents, because the next generation of autistic adults and leaders of the autistic community is going to come from people who are kids now. Researchers need both parents – who are really the experts on their own children – and autistic people who are the experts on living happy, creative, autistic lives. What are the differences between the way autism is treated in the UK and the US? During my research, I’ve been impressed by the fact that the UK always seemed to be about 30 years ahead of America. The NAS in the early days was already thinking about housing for adults and the transition to adulthood. The existence of autistic adults was not a surprise to people like Lorna Wing, because they had seen the first generation of diagnosed autistic kids grow up and become teenagers and young adults. In America, the diagnosis was not given to teenagers and young adults until the late 80s and early 90s.

It seems to me like the anti-vaccine movement is still stronger in the US. There are still parents there who blame vaccines, GM foods or pollution. Many parents in the US understand that there is no evidence to show autism is caused by these things, but they haven’t yet been given a simple story by experts that makes sense of the rising number of diagnoses. But there is one, and I’ve tried to make it plain in Neurotribes. What does your new book attempt to achieve? In a way, Neurotribes is an attempt to translate between the worlds of science and the lay public what happened in the last century to get us to our current point of understanding about autism. I’ve tried to give parents and other people who are interested in autism – even if they don’t have a personal stake in it – a very human story that is easy to comprehend, is deeply true, that goes a long way towards explaining the rising number of diagnoses and that also has emotional power. It’s great that there are now more and more autism researchers who are autistic themselves – so finally what Hans Asperger called “autistic intelligence” is aligning with the work of neurotypical researchers to get a more informed view of what autism is. In terms of valuing everybody across the spectrum equally, it’s not only good for us as human beings to value every member of society for just existing. Understanding autism is also about recognising the true nature of human intelligence, which is that profound gifts can coincide with profound disability. ●

Find out more • Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently by Steve Silberman is published by Allen & Unwin on 3 September. You can order it at www.autism.org.uk/amazon. • Watch Steve’s TED talk, The forgotten history of autism, at bit.ly/silberman-TED-talk bit.ly/silberman-TED-talk. • Steve answered some questions on camera at our Professional Conference earlier this year. View at bit.ly/silberman-profcon.

FEATURE • THE AUTISTIC GARDENER

CHASING GOLD

in the garden Alan Gardner is an award-winning horticulturalist and the presenter of Channel 4’s The Autistic Gardener. He spoke to us about mentoring his apprentices, having a true passion and how having Asperger syndrome has influenced his achievements so far. BY ELEANOR WHEELER

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THE AUTISTIC GARDENER • FEATURE

lan Gardner is not exactly a wallflower. He admits he likes to cause a stir. “I dye my hair bright pink, I wear nail varnish, I have tattoos. I stand out like a sore thumb. I’ve had people walking into posts, staring at me. I’ve had a guy in a van go into oncoming traffic because he was too busy looking at me!” With a chuckle, he adds, “It’s the little wins! The things that keep us going through life.” Alan’s love of plants started when, as a teenager, he pestered his parents to buy him a cactus. “I liked the shape of it. It was a nice little round one and I had it on my window sill.” After that, his dad brought home a colleague’s unwanted seed catalogue which contained cactus seeds. “I basically devoured it. I’d dug up the whole garden within a week.” Since then, Alan has created 40 RHS show gardens, winning numerous awards at Chelsea, Hampton Court and two gold medals at Tatton Park. He wasn’t told he had Asperger syndrome until he went along to his son’s dyslexia assessment. “After 30 minutes the expert said, ‘I think you both have Asperger syndrome’. I did nothing about it for a day, then I went online and looked it up and it ticked all the boxes. I was tested properly last year and out of the 18 traits of AS I had 14 – which doesn’t exactly make me borderline, does it?!” This summer he’s been on Channel 4 presenting The Autistic Gardener, in which he leads a group of apprentices who are also on the autism spectrum to create original gardens for clients. Alan was taken aback when he met the trainees for the first time. “Until that point, I’d only met a couple of people with Asperger syndrome, and there was a feeling they gave me when we met, which was they actually liked me! I’d never had that feeling before or since. Apparently they were very excited about working with me. As I walked over to meet them for the first time in the garden, they sounded like a group of children in the playground!” Alan talks about the experience of mentoring his apprentices with pride and, for someone who says he doesn’t see things from other people’s point of view, a clear understanding of their difficulties. “I enjoyed every minute of it. They were live wires. But it was the little wins which made it. Thomas, for instance,

was very upset on the first day about having cameras pointing at his face, and he struggled with getting his words out. But I brought him round and about half way through the filming he said something quite cheeky to me. I know it sounds silly, but I just laughed and I thought ‘Thank you, Thomas, that’s great’. He’s now in horticultural college. “The other highlight was James. He never made eye contact at all, he just stared at the ground, or would talk to you with his eyes shut. But he was so switched on – he kind of just stood there, listened to everybody and took it all in. It wasn’t until we went out filming on a project together that I stood there looking at him and thought, ‘Oh my God, he’s got green eyes’ – because he was staring straight at me. Forget the gardens, forget the buildings, forget the clients – for me it was that. It was those little things.” Despite not generally caring what people think, Alan felt a strong sense of responsibility for his apprentices. “The fear I had throughout the series was that I would lose one of them, because I know how easy that is – to wake up one morning and decide that you don’t want to do something any more. But I had the same five trainees at the end that I started with.” Alan is frank about how being on the spectrum influenced his mentoring. “It was easy for me to be interested in them because they were part of my special interest. Ninety per cent of the time I knew where they were coming from. But the one thing I couldn’t help them with was how to put up with neurotypicals.” There were plenty of challenges which came up during filming. “There were times when I would

“My wife has pointed out that I may not be sending the best message to my kids, getting paid thousands of pounds for playing with some cardboard.” YOUR AUTISM MAGAZINE

Charles is one of the five trainees who worked with Alan on the show

“My trainees were brilliant. Totally and utterly brilliant.” get upset because they’d got upset. And there was no logical reason in my head to explain it, but I had to think it through and resolve it.” Alan certainly feels being a great gardener is a part of his ‘aspie’ nature. “I’m incapable of doing anything half-heartedly. I could have easily made a living designing gardens in Birmingham, couldn’t I? But no – I had to go to the Chelsea Flower Show. And I’ve got to keep going back till I get Gold and Best Show Garden. The thing with horticulture is that I will never see everything that there is to see. Other interests come and go, but gardening is something which has held me for an awfully long time. There are so many species of plants. The inspiration comes from everywhere.” The only thing he feels has slowed him down has nothing to do with the actual gardening, but the social elements of working for yourself. “It’s the lack of social interaction thing. All the networking. It becomes apparent that you get jobs because you know somebody who knows somebody. But I don’t do small talk. I don’t find it comfortable. Another thing”, he adds with a laugh, “is that sometimes I won’t let things go. One of my clients described me as a terrier. If I come up with a design which a client doesn’t like I just don’t understand why.” Despite this, though, Alan has a pragmatic streak. “I am aware that there are lots of things in this world that you can’t do on your own. It took me a long time to realise that.” When it comes to sensory experience, how does Alan cope at huge, packed events like Chelsea Flower Show? “There were so many distractions for me at Chelsea, namely helicopters flying past. I love helicopters. I’d be on my hands and knees, putting in these plants. And the person with me would be asking, ‘Do you want another fennel?’ and a helicopter would have gone past and I’d be like ‘Wow! A Chinook!’ I don’t get overwhelmed by it because

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I’ve prepared beforehand. The day before I go into Chelsea Flower Show, I’ve already painted a picture in my head of the garden, the sound of the aeroplanes, the sound of the reversing vehicles and the articulated lorries – everything. When I arrive, I stand outside for a few minutes and adjust all my levels – the volume, my balance and everything else.’ Alan’s advice for young people with autism looking for work is simple. “You should do something you really, totally enjoy to earn your living, if not what’s the point? In garden design, you’ve got to believe in what you do and that it’s better than what other people do. Because if you don’t, you’ll be crushed.” But he’s also aware that he is privileged to be able to do what he loves for a living. “I’m not someone to show that you go somewhere at nine in the morning and you come home at five o’clock at night. My wife has pointed out that I may not be sending the best message to my kids, getting paid thousands of pounds for playing with some cardboard in the living room!” So what would he be doing if he wasn’t a gardener? Alan thinks for a moment. “I remember when they asked about careers at school, I told them I wanted to be a meteorologist. They said, ‘Great – BT have got some engineer jobs going’! I’ve always loved gardening, but for some reason it was considered to be something sub-normal back then. But garden designers get the limelight on everything now.” So has he had the last laugh? “I suppose I have. I just had to wait for gardening to become rock and roll.” ●

THE APPRENTICE POINT OF VIEW Charles Bender I liked being part of the series because it involved gardening, meeting up with new people, and having new experiences. I got on well with the other apprentices. We’re all on the autistic spectrum but everyone with autism is different, of course. I also enjoyed visiting the gardens in the UK that I’d never seen before. Some of them were really beautiful. Alan was a good mentor. He taught me how to use my brain a bit more and open my mind to the possibilities of how a garden could or might look. I found the TV aspect exciting and a challenge. It was fun to be thrown into the world of TV broadcasting. It made me feel like a TV presenter! If the opportunity ever came up to do that I’d definitely give it a go. At times having all the cameras there did feel intrusive, but I enjoyed the process of making the programme and there was down time in between the filming. I like gardening but I’d like to pursue a career in music. I’ve been a drummer in a band called Harripaul for a few months now.

Find out more • The Autistic Gardener was shown on Channel 4 last month and is available to watch online at www.channel4.com. • Into the Garden is a charity initiative for giving people on the autism spectrum the skills and knowledge to work in horticulture. Learn more at www.intothegarden.org.uk.

ADVICE • EDUCATION TRIBUNALS

How to get through an education tribunal Facing an education tribunal to argue for the right provision for your child can be a frustrating and nerve-wracking time. Our expert provides some basic information and advice about how to make sure you’re prepared. B y E l a i n e I l l i n g w o rt h , C o o r d i n at o r T r i b u n a l S u p p o rt L i n e ( E n g l a n d a n d Wa l es )

ppeals around SEN provision for pupils with autism are consistently high throughout the UK. Autism-related appeals have increased by 33% in England and Wales this year, and in Scotland 68% of appeals relate to autism cases. In Northern Ireland there has been a significant increase in the total number of appeals to tribunal. What is an education tribunal? An education tribunal is an impartial and independent panel comprised of a judge or convener and one or two specialist members who make decisions on certain educational matters when there is a disagreement between a parent or young person and their local or education authority. In Wales, children can appeal to the tribunal.

Hearings can vary in length, depending on how complicated the case is

A new condition called “Thecommunication tribunal aims to be accessible for social disorder has been added. unrepresented parents and young people,

and an outcome of a tribunal is never certain at the outset.”

What does the tribunal do? The tribunal looks at the information that parents or young people and the authority provide and decides how to settle the disagreement. The panel must consider all the evidence, both written and spoken, and make their decision. An appeal can take several months and a hearing can take a day or longer depending on how complex the appeal is. The tribunal’s decisions are based on education law, statutory regulations and guidance and case law. The law is different in England, Scotland, Wales and Northern Ireland. The tribunal resolves disagreement about statutory assessment for, and the education content of, Education

YOUR AUTISM MAGAZINE

ADVICE • EDUCATIONAL TRIBUNALS

The letter which tells you the tribunal’s decision should also include your appeal rights

Health and Care Plans (EHCPs), Statements and Co-ordinated Support Plans (CSPs), and whether the plan or statement needs to be maintained. Education tribunals across the UK also hear disability discrimination cases and in Scotland, they hear appeals on post-school transitions and certain placement decisions. The authority must write to you when it makes a decision about a Statement, EHCP or CSP. The letter must inform you of your appeal rights and of the deadline. Will I need legal representation? The tribunal aims to be accessible for unrepresented parents and young people, and an outcome of a tribunal is never certain at the outset. Many appeals are settled in the parents’ or young person’s favour before the hearing date. If you are going through a tribunal, you may be entitled to legal help to support you to prepare your case. Often, parents go to tribunal itself without a legal representative. Some have a friend or family member to represent them and others go alone and many are successful in their appeal. How do I prepare my case for a tribunal? You will need some understanding of the relevant education law where you live, and how it applies to your situation. Focus your efforts on what

Find out more Many parents go through tribunals without a lawyer you need to prove to the panel to win your case. Being able to give evidence is crucial. Be well-organised and plan for deadlines, keep your communications clear and factual, using everyday language and making sure you keep copies of everything. When you get the authority’s response to your appeal and their evidence, consider it carefully and plan how you will present your views. Our Education Rights Service offers confidential information, advice and support to parents and carers by phone or email. We can explain education law, your rights and entitlements, and complaints and appeals processes and support you if you are making an appeal. ●

“Be well-organised and plan for deadlines, keep your communications clear and factual, using everyday language and making sure you keep copies of everything.”

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Call the NAS Education Rights Service on 0808 800 4102, email educationrights@ nas.org.uk or visit www.autism.org.uk/ educationrights. If you live in England, get more information about the first tier tribunal (special educational needs and disability) at www.gov.uk/ special-educationalneeds-disabilitytribunal/overview. If you live in Scotland, find out more about the additional support needs tribunal at www. asntscotland.gov.uk. If you live in Wales, more information about the special educational needs tribunal for Wales (SENTW) can be found at sentw.gov. wales/?skip=1&lang=en. If you live in Northern Ireland, learn more about the special educational needs and disability tribunal (SENDIST) at www.courtsni.gov. uk/en-GB/Tribunals/ SpecialEduNeedsn Disability/Pages/default. aspx.

ADVICE • BULLYING

Bullying: how to spot it and what to do Paddy-Joe Moran is a 20-year-old author, blogger, and co-founder of online advice service ASKPERGERS? He shares some advice on bullying – why it might happen, how to spot it, and what to do if you think you might be being bullied. B y Pa d d y- J o e M o r a n

eople on the autism spectrum often find themselves targeted by bullies. This can make them feel depressed, and the experience can haunt them throughout their lives. Bullying can take many forms and bullies can even be people you think of as friends. How do you deal with this? And what can be done if you don’t even realise you’re being bullied? Why are people on the autism spectrum more likely to be bullied? People on the autism spectrum will often stand out from the crowd. At the same time, difficulties with socialising may mean they don’t have many friends to stand up for them. Taking things literally and being easily provoked into a reaction may also make them an inviting target for bullies. A lack of ability to initiate conversation might also mean they are less likely to tell other people when they’re being bullied.

Why is it important to stop the bullying? Being bullied can be an extremely difficult and stressful experience and leave someone feeling depressed – even suicidal. As well as affecting the individual physically and emotionally at the time, it can have long-reaching implications for their self-esteem and confidence, sometimes for the rest of their lives. Misunderstandings about bullying Bullying is not always obvious. Sometimes a person can appear to be a friend, but can actually be making fun of you. This type of bullying isn’t necessarily subtle and other people will probably pick up on it. It can be the person with autism alone who is oblivious. In cases like these, the deceit and manipulation can be maintained for years. People on the autism spectrum can take things literally, which means they may misunderstand a joke, or believe they are being made fun of when, in fact, they are not. A lot of friendships are built on the mutual ability to make

fun of each other. Generally people know how far to take this and will not be offended when their friends joke around or tease them – although people who don’t have autism get this wrong sometimes too. If you don’t join in with the teasing or banter, or get upset, real friends should pick up on this and stop. How can you tell if you are being bullied? You may notice that your so-called friends always seem to be making jokes at your expense and feel humiliation and embarrassment when you spend time with them. It is entirely possible that you may not have connected those feelings to the person before. You may also feel uncomfortable and not want to go in to school or work because of a certain person or group of people. This could mean you are being bullied by them. Equally, if a so-called friend

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Advice • BULLYING

asks you to do something that makes you uncomfortable and continues to put pressure on you to do it, even when it is clear you don’t want to, this is a form of bullying. There may also be a situation in which so-called friends lay down conditions for the friendship. For instance, somebody may say, “If you do this for us, you can be our friend.” This is a form of manipulation rather than friendship. Being aware of other points of view Even once you know the signs, it may be very difficult for someone with autism to notice when they are being bullied. As hard as it may be, you might have to accept that you struggle with this and be willing to listen to concerns that parents or siblings may have. People with autism can struggle to recognise social cues and to understanding people’s intentions, which can leave them vulnerable. This doesn’t mean you should let others pick your friends, but it is worth considering that somebody else who cares about you (such as a family member) may be able to see a situation from another angle. Instantly dismissing somebody else’s concerns probably won’t be helpful for you in the long run. What can you do if you are being bullied? If you’re able to, you should communicate your concerns to a parent, teacher or colleague using whatever mode you prefer. Making somebody else aware of the problem can be a massive help in itself and they may be able to take action to resolve the issue. Assertiveness and self-esteem training or social skills groups could

Autumn 2015

prove helpful. Whatever stage of life somebody is in, if they are being bullied then improving self-esteem and confidence is a positive step. Autism-friendly social clubs may also be a good option as they can improve your understanding of friendships and friendly interactions, including what is ‘normal’ in a friendship, and what isn’t. This in turn can help you tell whether or not you are being bullied. Why do bullies bully? Bullies may pick on other people because they are insecure, have been bullied themselves, or are trying to overpower their own feelings of vulnerability. They may bully because they enjoy seeing others suffer, like to have power, or simply because they can. They might be friendly and approachable to everybody

else, but bully a particular person (for instance, someone on the autism spectrum) because they are uncomfortable or disdainful of the differences they can see. In truth, there are a multitude of reasons why somebody might be a bully and it is true that not all bullies are bad people for their entire lives. However, the reasons behind a bully’s behaviour shouldn’t matter to someone who is being bullied as it is not up to them to solve the bully’s problems. If you are a victim of bullying, you need to look after yourself and your own health and safety first and foremost. Being the target of bullying does not make a person, with autism or not, inadequate or worthless, any more than being a victim of theft makes that person a criminal.

BULLYING • ADVICE

Trying to understand a bully may be helpful but your first concern must be for your own wellbeing

A person’s worth does not go down simply because somebody else chooses to bully them. If you are being bullied, it is important to remember that there are ways and means to lessen its impact and even to stop it altogether. ●

Useful websites and resources • Read Paddy-Joe Moran’s blog at askpergers.wordpress.com, follow him on Twitter @Askpergers or ﬁnd him on Facebook Askpergers. • If you are a young person, more advice about what to do if you’re being bullied can be found at www.autism.org.uk/bullies. For advice for parents, visit www.autism.org.uk/bullying. • For information about bullying in the workplace, go to www.autism.org.uk/bullying-at-work. • Anti-bullying charity Kidscape offers general advice, information and training. Visit www.kidscape.org.uk.

Paddy-Joe Moran

YOUR AUTISM MAGAZINE

Andrew being supported by brokerage development worker Sara

Spotlight on brokerage services

How the NAS can help you Brokerage is about making sure that people on the autism spectrum and their families can get extra assistance to plan and make choices about support. Lesley Waugh is our National Brokerage Coordinator. She explains what the service does.

hat does the brokerage service do? The brokerage service offers support with social care assessments, support planning, community mapping (finding out what a person might be able to access locally that will support their social care needs), help with negotiating with the local authority and implementing social care plans, as well as reviews.

What do people struggle with most? People often struggle with the social care assessment process, the length of time it can take local authorities to undertake assessments and also how to develop their own support plans. The jargon used by professionals can also be confusing and advocates are often needed. Sometimes people struggle with understanding the choices they are given. Many people also need help with understanding their legal rights.

Who can access the service? Brokerage support is for all people who have a diagnosis of autism (including Asperger syndrome) who are eligible for social care funding and support.

Do you have any examples of people who’ve really benefited from using the service? A young woman called Tayler used our brokerage service after she left

“The achievements and successes of individuals make the job really enjoyable. We love supporting people to tell their stories.”

school. She has high support needs and this would normally have meant moving into a residential setting. But after using the brokerage service she chose to stay at home and be supported by her mum and specialist support workers instead. What is the biggest challenge in the way of providing more support? Two of the big challenges are trying to cover the whole of England and meeting the increasing referral numbers. It can also be hard to find specialist providers that can support people in an autism-specific way. Sometimes people are not allowed to choose an autism-specific broker as their authority already has their own brokers. How do you access the services? Email lesley.waugh@nas.org.uk, call 07799347468 or go to www.autism.org.uk/brokerage to find out more.

Did you know?

This service is funded by the Department of Health’s Innovation, Excellence and Strategic Development Fund (IESD), but curbs on government spending mean we are increasingly in need of support from donors and fundraisers to be able to continue to provide many of our services. Visit www.autism.org.uk/getinvolved to find out how you can help.

YOUR AUTISM MAGAZINE

RESOURCES

Autism Spectrum Disorder AUTHORS: Lisa Joseph, Latha Soorya, Audrey Thurm PUBLISHER: Hogrefe Publishing PRICE: £19.90 VERDICT: A concise and informative overview for professionals of some of the significant issues relating to autism, but with some omissions. WRITTEN BY three medical practitioners and researchers from the USA, this book discusses key areas such as diagnosis and the difficulties in determining empirically supported ‘treatments’ of autism. The authors provide insight into the dynamic and changing nature of autism understanding and the advances in genetic and neurobiological models. The book doesn’t address the changing understanding of women and autism and doesn’t reference Lorna Wing and Judith Gould’s important work on developing the term ‘autism spectrum’. But it does touch upon differences in prevalence and demographic trends around the globe, drawing attention to the fact that no differences have been found in overall diagnosis across race, ethnicity, and socioeconomic status.

Giveaway The winners of last quarter’s competition to win one of ten copies of How to Fly with Broken Wings by Jane Elson are; Naomi from Portsmouth, Sally from Buckinghamshire, Julie from Leicester, Sarah from Milton Keynes, Rebecca from Tonbridge, Rhona from Glasgow, Debbie from Nottingham, Rebecca from Coseley, Elaine from Cheadle Hulme and Pam from Bognor Regis. Congratulations! For your chance to win a Hulton Crafts craft kit, email yourautismmag@nas. org.uk with your name and contact information by 4 December 2015.

Reviewed by Dr Laura Cockburn, Specialist Educational Psychologist and Manager, The Lorna Wing Centre for Autism To order books recommended by the NAS, go to www.autism.org.uk/amazon.

Our six favourite… sibling groups (as recommended by our volunteers

NAS RENFREWSHIRE BRANCH ARTISM GROUP, SCOTLAND This weekly hour of arty activities followed by snack time and then a group game is for children with autism and their siblings. There are also toys and a quiet area with iPads for children who’d rather not join in, and a seating area with tea and biscuits for parents. Email NASRenfrewshireBranch@ nas.org.uk for dates and to book.

AUTUMN 2015

PEMBROKESHIRE SIBLING GROUP, WALES For children over seven with a sibling with any disability, the group organises days out and workshops, such as iceskating, laser tag and residential activity weekends all year round. There’s an event for families once a year too. Find out more at www.pembrokeshiresibling-group.org.uk.

SOUTH HAMPSHIRE BRANCH FAMILY YOUTH CLUB, SOUTHERN ENGLAND Open to all the family on a Saturday, this club has been running for 11 years. Activities include table tennis, air hockey, crafts, board games and toys. There is also a large hall for ball games, bowling and parachute games. Find out more at bit.ly/shants-branch-fyc.

RESOURCES

Tony the turtle series (Volume 1)

Craft kit

AUTHOR: Valerie Sheehan

SUITABILITY: Adult supervision advised. Unsuitable for

MANUFACTURER: Hulton Crafts (hultoncrafts.co.uk) PRICE: £10.00

PUBLISHER: Independent Publishing Network

children under three years old.

(www.tonytheturtle.com) PRICE: Around £14.00 VERDICT: These beautifully illustrated picture books are perfect for families to read together

VERDICT: Relaxing and creative, but requires

THE MAIN character (Tony the turtle) is a very relatable character who shows it is okay to be different. He experiences difficulties many individuals with autism face, including communication, changes in routine and sensory issues. The book validates these feelings and then shows simple methods of how they can be overcome. The pictures are very accessible and make this book suitable for children to access on their own as well as with parents. The book is written to rhyme all the way through, which occasionally becomes strained and disrupts the rhythm. My personal favourite was Tony Tries New Food, which includes great ideas for introducing new food in a fun, low pressure way. Overall I was impressed with the strategies included in the books and how Tony made them seem simple and successful. Reviewed by Rebecca Gibb, NAS Outreach Support Worker

concentration. THE KIT gives an introduction to rag art, mosaics, card-craft and felting and provides some basic recipe ideas as well. It comes in a brown paper bag and is eco-friendly. I feel it is good value for money. My son is 11 and is on the autism spectrum. He wanted to test this kit as he likes creative things. However, he did not have the concentration to be interested in it for long. I enjoyed the rag art and found it quite relaxing. The different coloured and textured cards were good. I feel this may be more for the parent. I would recommend to other parents to help them relax if they have the time and energy. Review by Gill Jagger, Assistant Branch Officer at NAS Hull East Riding

in NAS branches across the UK)

NAS DUNGANNON BRANCH SCHOOL HOLIDAY ACTIVITY CLUB, NORTHERN IRELAND This Saturday club is normally for children on the autism spectrum but it’s extended to their siblings during the school holidays. This summer’s events include surfing, indoor adventure, a clay workshop, a Star Wars day and crafts. Email dungannon@nas.org.uk.

RAINBOWSIBS, LONDON RainbowSibs is open to siblings across London aged six to 18. Ten weekly sessions create a programme of activity for siblings to learn more about autism, to share thoughts and experiences, and to spend time in a safe and private space with others in a similar position as themselves. Visit www.rainbowsibs.com.

NAS MERTHYR TYDFIL BRANCH, WALES The NAS Merthyr Tydfil Branch run a soft play group with siblings and host flume parties at the local leisure centre which siblings, as well as children on the autism spectrum, are welcome to attend. Find out more at www.facebook.com/ NASmerthyrtydfil or email Merthyr.tydfil@nas.org.uk.

YOUR AUTISM MAGAZINE

EUROVISION STARS

Meet PKN! From left to right: Pertti Kurikka, Sami Helle, Kari Aalto and Toni Välitalo

We… represented Finland for Eurovision! Pertti Kurikan Nimipäivät (PKN), a punk band made up of four Finns with learning disabilities and autism, represented Finland in this year’s Eurovision Song Contest. They were celebrated by Finns worldwide, and even featured on a postage stamp.

LTHOUGH THE band members were disappointed not to make it to the final of this year’s Eurovision Song Contest, the journey that brought PKN to Vienna was rewarding and unforgettable. Pertti Kurikan Nimipäivät (PKN), or Pertti Kurikka’s Name Days, was named after the fact that the guitarist, Pertti, who writes the band’s music, enjoys celebrating his name day (the feast day of a saint after whom a person is named) every April. The band was set up around six years ago as a result of a Finnish day centre activity, and the project took off from there. British music is a great inspiration for the band. Kari Aalto, PKN’s lead singer, who is autistic, told us how the Beatles, the Rolling Stones and the Hollies, to name just a few, had all inspired his love of music. In May, PKN took their hit song ‘Aina mun pitää’ (‘Always I have to’) to Vienna. With striking honesty the song recounts how, every day, we’re made to do things we have to do but don’t necessary want to do, like making our bed. Kari told us how his favourite thing about being in a band that has become a household name in Finland is that “I can tell the Finnish

government and Finnish politicians all about the things that bother me on this planet Earth.” But being a punk rocker isn’t always easy – performing involves late nights, and many of PKN’s most diehard fans like to join them on stage during performances, and start raving with the band. This sometimes means stopping a song and starting it over again, partway through. What does it take to become a punk rock star? Kari’s philosophy is as follows: “You don’t really need much more than to be a social kind of person who believes that ‘Life wins’ – someone who takes themselves seriously and grabs themselves by the scruff of the neck. You need to know what you hope from life and want from life. That’s how things start falling into place and that’s how I found success.” It’s their love of music that keeps the band going. “Never in my wildest dreams could I have dreamt when I was young that I would become a musician,” Kari told us. “I’ve always liked everything under the sun when it comes to music, I’m not judgemental when it comes to the kind of music I listen to saying ‘this is stupid’ or ‘I don’t like this’. I’m guided by my mood and listen to music that suits my frame of mind at any given moment in time. Am I having a bad day or a good day? Do I feel good, or do I feel bad? The music I turn to all depends on these things.” ●

BY HEIDI AHO

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

AUTUMN 2015