Your Autism Magazine - Autumn 2017 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 51 – NO 3 • AUTUMN 2017

STANDING UP FOR YOUR RIGHTS Parent campaigner, Jane Raca

David Mitchell

THE SARACENS

Autism-friendly rugby

AUTISM HOUR ADVICE ON PIP APPEALS THE BENEFITS OF ART THERAPY

on increasing autism understanding

Finding her voice Ameya talks singing, stage and school

Autumn 2017 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk

WRITERS Alice Todman, Flynn Hagerty and Margred Pryce T H E N AT I O N A L AU T I S T I C S O C I E T Y 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 James Pembroke Publishing Tel: 0203 859 7098 hobyabdel@jppublishing.co.uk www.jppublishing.co.uk SUBSCRIPTIONS Only available to members of The National Autistic Society To join, visit www.autism.org.uk/magazine 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 Liaison Print Tel: 0113 275 3912 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 Autumn Vol 51, 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 National Autistic Society. 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 our charity’s endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that our charity endorses or supports the groups or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.

hope you’re having a lovely summer! This issue we’re pleased to bring you some really inspiring stories of achievement. Cover star Ameya tells us how singing helps with her Asperger syndrome and how she conquers those stage nerves. Patrick talks about how art therapy has transformed his life − in the space of six months, he’s gone from feeling in crisis to having his first solo exhibition. We also hear from Jane Raca, mum to James, who campaigned tirelessly to change the SEN tribunal system. Plus author David Mitchell, whose son is on the autism spectrum, tells us what he learnt about autism from translating autistic author Naoki Higashida’s new book, Fall down 7 times, get up 8. If you’re into sports, read about our visit to the Saracens’ autism-friendly rugby club. To see more autism-friendly clubs, shops and venues near you, why not get involved in our Autism Hour on 2 October? Read more in our news section. Suzanne Westbury EDITOR

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Contents 04 News 11 Research in focus 15 Readers to the rescue 16 How do I… use art therapy? 18 Interview: David Mitchell 22 Feature: Parent campaigners 24 Feature: Autism-friendly rugby 28 My story: Ameya Kohli 32 Advice: our online community 36 Advice: PIP hearings 41 Spotlight on support: transition 43 Reviews 46 I’m an… award-winning archaeologist

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28 3

News

A round-up of the stories that affect you

THANKS FOR TAKING PART IN OUR GENERAL ELECTION CAMPAIGN

How can schools better meet the needs of autistic pupils?

Parliamentary inquiry into autism in schools The All Party Parliamentary Group on Autism (APPGA) is carrying out a parliamentary inquiry, supported by our charity, into education and support for children and young people on the autism spectrum in England. This is in response to concerns raised by parents about their children’s education. The inquiry is looking at how to make sure that the right mix of school places is available in every area to meet the wide-ranging needs of autistic

AUTUMN 2017

pupils. It is considering why some areas are better at this than others, and how good practice can be shared more widely. It is also exploring how autism can be better understood in schools, and what difference the special educational needs and disability (SEND) reforms are making for autistic children and young people. The APPGA’s report and recommendations will be published in October.

OVER 200 VOLUNTEERS took part in our #ImOne campaign, putting autism and the issues faced by autistic people and their families to their election candidates. #ImOne campaigners organised coffee mornings, hustings and 1-2-1s to meet with over 40 candidates across the country, raising awareness of key autism issues such as employment, education, health and social care. Ed Miliband, the re-elected MP for Doncaster North, was among the candidates who attended these events. Campaigner John, speaking after meeting the former Labour leader, said, “#ImOne gives candidates a better understanding and acceptance of autism and makes sure future policies that deal with autism and other ‘hidden’ disabilities are properly considered and correctly implemented.” Want to support autistic people by campaigning, donating or fundraising? Visit www.autism.org.uk/getinvolved.

Ed Miliband at an #ImOne event

AUTUMN 2017 • NEWS

Shops will turn down noise

Opening April 2018

Would you like to take part in Autism Hour? Our Too Much Information

campaign is all about improving public understanding of and attitudes towards autism. We want to open up public spaces so autistic people and their families no longer feel like they’re living in “an autistic bubble”. Our research reveals that 64% of autistic people avoid going to the shops. That’s why we’re launching Autism Hour. With the support of shopping centre owner intu, on the week of 2 October, we’re asking shops and businesses across the country to spend 60 minutes taking simple steps that lead to a more autism-friendly world. These include dimming the lights and turning down

music and other noise. We need as many shops and businesses taking part as possible. Do you have a local shop you’d like to see taking part in our Autism Hour? Visit www.autism.org. uk/AutismHour to find out more and download leaflets you can give to your local businesses to get them involved. Later in August, we’ll have an interactive map for you to find your local Autism Hours and plan your visit!

AUTISM CENTRE IN NORTHERN IRELAND TAKES SHAPE The building of our state-of-the-art autism centre in Northern Ireland is making amazing progress and we’re still on track to open the service to autistic adults and their families in April 2018. Find out how we’re getting on at www.autism.org.uk/nicentre.

MENTORING FOR AUTISTIC ADULTS IN GLASGOW Our Person to Person project will provide mentors for around 250 autistic people over the next five years in Glasgow, thanks to £176,500 from The Big Lottery Fund’s Improving Lives fund. Jenny Paterson, Director of The National Autistic Society Scotland, said, “We will be able to train a team of volunteer mentors to provide support to autistic people in Glasgow and the surrounding areas. “Together, they will meet goals, such as taking part in social activities, or dealing with complicated banking and housing issues.” To apply to be mentored, or to volunteer as a mentor, email scotland.services@nas.org.uk.

Our new purpose-built campus in Chigwell, Essex, will be home to the new Anderson School and a new Lorna Wing Centre for Autism. The school will cater for students aged 11-19 and will focus on preparing them for life and work, via tailored support, academic qualifications and vocational courses. Find out more at www.autism.org.uk/enterprisecampus.

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NEWS • AUTUMN 2017

Meet Sir Topham

Chelmsford Museum receives the award

First anniversary of Autism Friendly Award

WILL YOU BE A REALLY USEFUL ENGINE? Join our Thomas & Friends themed sponsored walk on Saturday 23 September and get free tickets to Drayton Manor Theme Park! Perfect for families and Thomas enthusiasts alike, All Aboard for Autism is a short 3km sponsored walk around the perimeter of Drayton Manor Theme Park, home of Thomas Land. Because we know it can be hard for families with children on the autism spectrum to plan days out, we are proud to say this event is completely autism-friendly. Participants will receive a social story of the day, full information e-pack with easy read format and help from volunteers who have lots of experience working with autistic people. To sign up, visit www.autism. org.uk/allaboard or email allaboard@nas.org.uk.

Our Autism Friendly Award is now a year old, and over 25 venues have already achieved the prestigious accolade, demonstrating their commitment to being a welcoming and inclusive place for autistic people. We have worked with West End theatres to hold amazing autismfriendly performances of incredible shows like The Lion King, and three airports have achieved the award,

making the experience of travelling by plane more manageable for autistic people. Do you know any businesses in your community that you would like to be autism-friendly? All the information on the award, what’s needed, and how to apply can be found at autism.org.uk/autismfriendly.

WELSH NATIONAL ASSEMBLY VOTES TO SUPPORT AUTISM BILL Our Act Now campaign has reached a significant milestone: The National Assembly for Wales voted on 14 June in favour of autism legislation. Assembly Members (AMs) agreed with us and the calls of our Act Now campaign, that specific autism legislation is needed to better support autistic people and their families in Wales. If enacted, the bill could include a duty on every local area in Wales to have a pathway to diagnosis of autism. It could also introduce duties on local authorities and health boards about the way they

Well done to our campaigners

organise local services and support for autistic people and their families in Wales. Meleri Thomas, External Affairs Manager of The National Autistic Society Cymru, said, “Our members and supporters who attended the debate, as well as those that contacted their local AMs to share their experiences have been the driving force behind this hugely positive step forward. “We have long called for support and services that autistic people can expect to receive to be placed on a statutory footing. We will work with all parties to support the development of legislation that protects and promotes the rights of autistic people in Wales.” Read more at www.autism.org. uk/national-assembly-vote.

In June and July, The Autism Show, the UK’s biggest autism exhibition, welcomed 10,000 people. If you didn’t make it, you can view speakers’ presentations at www.autism.org.uk/ autismshow and see the dates for 2018 in London, Birmingham and Manchester at autismshow.co.uk. Virtual reality at our Autism Show stand

AUTUMN 2017

NEWS • AUTUMN 2017

Rita celebrates her achievement

News in brief

MARATHON RUNNER RITA GETS MYSTERY DONATION When Rita Williams-Hall set out to raise £500 for our charity by running the Virgin London Marathon 2017, she never expected to raise nearly £2,000. Nor did she expect to make such a huge impact on an anonymous member of the public who was so inspired by her determination to finish, they donated £800 to her fundraising page and left the message “I don’t find inspiration often – today I found it in you”. Of the 40,000 competitors that took part in April, Rita was in the final six to complete the marathon. After experiencing excruciating pain and exhaustion that led to her nearly giving up at mile 20, she endured a further 6.2 miles of discomfort to make it to the end. Rita chose to run for our charity as children of several of her friends are autistic,

MEMBERS TOGETHER DAY

including her best friend’s daughter, Vienna. Rita was so touched by the message and donation that she is looking for the donor to thank them personally. She said, “I don’t want them to feel forced to come forward, but I would love to thank them. I ran the marathon to raise money for The National Autistic Society, and it was such an unexpected bonus to inspire someone else while doing that.” To support Rita go to http://bit.ly/2p6AsF8. Apply for a place in the 2018 Virgin Money London Marathon at www.autism.org. uk/londonmarathon.

On 30 September, we’re hosting Members Together day and would love to see you there! Taking place in Thames Valley School in Reading, the day will offer lots of sessions for you to get involved in. For further information, visit www.autism.org.uk/ MembersTogetherday.

VISIT YOUR NEW ONLINE COMMUNITY Our online Community has a new mobile-friendly platform. You can find support and information about autism by visiting various forum threads − such as ‘parents and carers’ and ‘adults on the autism spectrum’. Find out more in our feature on page 32 and visit community.autism.org.uk.

LONDON’S FIRST DEDICATED INCLUSIVE DANCE STUDIO Want to waltz? Raring to Rumba? Step Change Studios in Westminster is now offering weekly dance classes for people on the autism spectrum. The company will also deliver dance in schools, colleges, social care, healthcare and community settings. Founder Rashmi Becker said,

“We established Step Change Studios out of a shared passion and commitment to create opportunities for everyone to be able to dance and gain all the benefits dance has to offer. “Our work can range from low impact chair based activity for people with limited mobility through to more active programmes where we deliver regular dance sessions and prepare participants to perform for a community or special event.” Find out more at: www.stepchangestudios.com or call 07976 363861.

AUTUMN 2017

DIAGNOSIS CRISIS WORSENS New figures from Public Health England on services for autistic adults in England suggest that the autism diagnosis crisis is deepening. The average waiting time for adults to be seen is now 16 weeks, while in 2014 it was 13 weeks. Read our response at www.autism. org.uk/autismsupport-report. Autistic adults are having to wait longer for diagnosis

Research in focus

Bringing you news of the latest research into life and work on the autism spectrum

The potential of parent support groups Can parent support groups be used soon after diagnosis to improve the mental health of children on the autism spectrum and reduce family stress? Researchers at King’s College London are investigating. Most young children diagnosed with autism display additional concerning behaviours and emotions. These include, amongst others, hyperactivity and difficulties with attention, fears and worries, and defiance and aggression. Effective support is essential as parents frequently say that these behaviours lead to further impairment and family distress. Group programmes which teach strategies to manage concerning behaviours and emotions may be helpful for parents. Providing parents with support soon after a diagnosis could lead to better outcomes for them and their child in the long-term. As part of a government funded research project (IAMHealth: http://iamhealthkcl.net/) a team of clinicians and researchers at King’s College London have developed two new group programmes for parents of four to eight year olds on the autism spectrum. Led by Professors Tony Charman, Stephen Scott, Emily Simonoff and Dr Vicky Slonims, the purpose of the Autism Spectrum Treatment And Resilience (ASTAR) study is to evaluate the new parent groups. Although each has its unique focus, both programmes use recognised strategies designed

The programmes could improve the lives of young children on the autism spectrum and their families

to help parents manage concerning child behaviour and emotions. Tailored support from experienced clinicians is also offered. The first phase of the study is underway. This phase will test the study procedures and group programmes to see what parents think of them. Feedback from parents to date has been promising. “The programme is packed with very useful information. Sharing experiences with other parents has helped me understand my son even more.” – Mum of a four year old on the autism spectrum. Following this phase, the two parent groups will be compared to see whether they reduce concerning child behaviours and emotions.

The study will also look at how the programmes affect parents and any associated healthcare costs. If found to be helpful, the programmes have the potential to improve the lives of young autistic children and their families. In the long-run it is hoped that the groups will be widely available to families. To find out more, please email Dr Melanie Palmer at ASTAR@kcl.ac.uk. We provide the EarlyBird support programmes for parents and carers. Read more at www.autism.org.uk/ EarlyBird. Go to www.autism.org.uk/parents for more resources for parents.

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RESEARCH • FOCUS Researchers want to hear about vulnerability and mental health issues amongst autistic people

Our new report makes individuals’ stories heard in Transforming Care Families of people who have experienced mental health hospitals told us that care, both in hospitals and the community, needs to be improved. Almost two years ago, NHS England announced its plans to improve care and support for people with a learning disability, autism or both in the community, and close inpatient mental health beds. Over the last year, The National Autistic Society and Mencap have met and interviewed families of people who have experience of mental health hospitals. We have used what they told us in a new report to find out how the system supported them and what problems they faced. Their stories focus on problems having their voices heard, not getting good quality care, discharge plans being delayed, not

having the right services in the community and staff that understand autism. We have made some recommendations that we think could help change this. The Government needs to strengthen the rights of people in inpatient care and their families. NHS England needs to make sure that discharge plans are made and stuck to, and that good quality care and support is available in the community. And professionals need to understand autism and learning disability better. We’ll be sharing our report on our website and social media channels in the next few months.

Families reported issues getting good quality care and discharge plans being delayed

LEARNING ABOUT CHALLENGES THROUGHOUT LIFE Researchers at the University of Cambridge are recruiting autistic adults to take part in an online survey about life experiences and mental health. The survey, which is part of a research project at the Autism Research Centre (ARC) is funded by the charities Autistica and the Autism Research Trust. It aims to identify negative experiences that commonly affect autistic people living in our society. The online survey includes questions about experiences in education, employment, and relationships, as well as contact with the criminal justice system and social services. A panel of autistic adults and parents of autistic children helped choose the questions. Long term, the researchers aim to use the results to find new ways of protecting people from adversity and mental health conditions. Take part in the anonymous survey at www.autistica.org.uk/survey-vulnerabilitymental-health-autism/. Please note that you must be over 18 to take part.

Find out more or get involved • Read autism research in the Autism journal at aut.sagepub.com. Members of The National Autistic Society get a 30% subscription discount. • Our website is a world-leading resource for autism information. Find out more at www.autism.org.uk.

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Readers to the rescue!

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

For expert advice and information

By growing plants that attract wildlife, you can add another dimension to the garden. – Becky, horticultural therapist

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

0808 800 4104

Cooling off in the pool! MY LAD REALLY wants to get out in the garden. I want to make it a safe, autism-friendly and pleasant place for him to be. Does anyone have any tips? – Aimee, via Facebook WHAT TO PROVIDE in an outdoor space really depends on the needs of your child. You want it to be somewhere safe, from which he cannot ‘escape’, so ensure that any hedges, fences or walls are secure. If your son does not have an understanding of

what is or isn’t safe to eat, you will need to ensure the plants are non-poisonous. If your son likes to be active, provide pathways for him to run on. Paths may lead to a safe water feature. This can be a wonderful sensory feature. Go to the garden centre and choose plants on the basis of how safe they are and for their sensory value. Are they good to touch? To smell? To taste? Children can be encouraged in this way to try new tastes and textures.

My seven-year-old son, Nicholas, is autistic, nonverbal, and in a world of his own. One of Nicholas’ traits is that he likes to throw toys over next door’s fence. He is also an expert ‘mountaineer’ and would find a way of climbing any fence no matter how tall, so I enclosed the whole garden in a ‘Jurassic Park’ style bird cage! This has been in use now over two years, and I can leave him in the garden unattended for 15 minutes without worrying what he’s doing or where he is. He loves bouncing and swinging. I have a trampoline, climbing frame and swing set and can hear him playing. As soon as he comes home from school, he makes a beeline for the garden and stays out for as long as he can. – Jeremy, Your Autism Magazine reader*

Help me next!

I think I am autistic and want to get a diagnosis. But my GP says there’s no funding for adult diagnosis in my area. What should I do? - David, via Facebook SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of Fall down 7 times, get up 8 by Naoki Higashida

Post your problems or answers on Facebook YourAutismMagazine, 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.

*Jeremy wins a copy of A boy made of blocks by Keith Stuart.

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How do I...

Use art therapy

Patrick Samuel, an artist with Asperger syndrome, writes about how art therapy has changed his life. B Y PAT R I C K S A M U E L

s a child I was hyperactive. I would get distracted, restless and angry very easily and was prone to outbursts when things suddenly changed. I would be moved from class to class as teachers didn’t know how to deal with me. It was my mum who showed me how rewarding drawing and painting could be. We did a lot of arts and crafts together. The smell of paints in their little tubes, the feel of a crayon as I held it between my fingers. The way the light came through sheets of tissue paper. Oh, and the taste of chalk. I could sit for hours and draw or paint. Those two things reduced my hyperactivity as a child and I always had some pencils and paper with me.

Draw or paint daily

Unfortunately, between 1996 and 2016, I didn’t draw or paint at all. I forgot how. As hard as I tried to ignore the limitations Asperger’s placed on me, I was simply becoming less and less able to cope with the demands of adulthood. By December 2016 I was in hospital, having attempted suicide for the second time. My diagnosis, treatment plan and psychiatric evaluations followed. It’s all been very helpful, but I would not have gotten it if I wasn’t willing to take responsibility for my actions. I had to face up to my limitations, accept my difference and not blindly ignore it, stumbling from one disaster to the next. The thing that played a big part in this turnaround of my destructive life was my daily art therapy, which began on 23 December. Once art therapy started working for me, it was like the whole universe opened up. But, I had to keep doing it every day, even when I had concussion, or was dealing with the side effects of my medications.

AUTUMN 2017

Draw what you feel

On that first day, my carer placed an empty A3 drawing pad on my lap, perhaps frustrated at my endless silence. There was the complete inability to put my thoughts into words, or express my emotions and the lack of social imagination to be able to communicate precisely what I was thinking when I swallowed those pills. I just didn’t want to talk anymore. He told me just draw what I was feeling. Forty minutes later I finished a self-portrait. Half of my face with rotting flesh and bone protruding. It reflected everything I was feeling, or rather not feeling. I was dead from the inside out and fed up of trying to hide it. This is who I was. In that moment, I actually felt something. A little feeling of release. And I was done for the day. The next day I drew again. Another self-portrait. Sitting atop a gravestone in a cemetery I saw myself reflecting on the mistakes I’d made. The drawing was from a real-life incident that took place in 2015 when I made another big mistake in my life. I’d never been able to talk about it before, but somehow drew it and wrote down my thoughts and emotions, as well as my deep regret.

Go beyond drawing yourself

Each day I’d complete a picture. Eventually they weren’t self-portraits anymore as I

HOW DO I? • FEATURE

started to look beyond myself. I started to draw my dog and other animals. Forests and fields. Then other portraits. Then the moon, the stars, planets, galaxies, other universes, dimensions, portals. I was travelling, exploring… The point is, art therapy is helping me to stop focusing on myself and looking inward. It’s enabling me to look up and beyond. It’s given me the power to dream again, to envision a future me who could use these experiences to build something of a life that could inspire others. Art therapy is a chance to use my Asperger’s for good, rather than the harm I’d been causing to myself and others.

Use your art to build a social life

Art therapy is helping me build social skills. I don’t just want to create art, I want to share it. In a short space of time I’ve secured over a dozen sponsors including Cass Art, The Frame Company, IKEA and Tiger. I’ve also reached out to other artists and they’ve kindly donated many of their materials. It’s given me a topic to talk about that others can relate to.

Think in pictures

Art therapy has helped me get to the bottom of problems and identify issues that I’ve been unable to access in other ways. There were a lot of questions about myself and my behaviour that I couldn’t understand or answer until I was first able to draw those pictures because that’s how my brain works – in pictures – not words.

Patrick’s artwork

Just get started Draw what you feel and what comes from that is an honest representation of what you’re thinking and feeling. It’s all the things you couldn’t say before. It’s all the thoughts that were rustling through your head that wouldn’t settle before. It’s all the pain and hurt you couldn’t let go of. It’s all the anger you’ve been holding onto. It’s all the joy that comes with that sense of release. It’s okay to get mad at your art. Smear the paint. Rip up the paper. Do what you need to do to express yourself. Use pencils, old newspapers, envelopes, macaroni, glue, shoe polish. Use whatever you have. Art and art therapy is about expression and release, and it’s about you, no one else. Art therapy might not work for everyone in the same way. We’re all unique individuals with wonderfully complex brains that work in so many different ways. What works for me might work for you, or it might not. You won’t know until you try. ●

Was this advice helpful? Let us know at YourAutismMag@nas.org.uk.

Useful resources

• See more of Patrick’s art and his exhibition dates at: http://patricksamuel.net • Find services and therapies near you in our Autism Directory at www.autism.org.uk/directory.

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“I hope those who are working directly with autistic people will read Fall down 7 times, get up 8, because that’s what will make a difference to people’s lives, like my son.”

David’s son is on the autism spectrum

FEATURE • DAVID MITCHELL

Found in

translation

Author David Mitchell has achieved global success with his books, including Cloud Atlas and The Bone Clocks. But he says the books of autistic and non-verbal author Naoki Higashida, which he and his wife KA Yoshida have translated into English, are far more important. BY ELEANOR NEWLAND

n 2013, David Mitchell and his wife Keiko Yoshida translated into English the bestselling memoir of Naoki Higashida, a 13-year-old autistic Japanese boy, titled The Reason I jump: one boy’s voice from the silence of autism. They have an autistic son and David wrote in his introduction that Naoki’s words allowed him to feel, for the first time, as if his own autistic child was explaining what was happening in his mind. Now the couple have translated Higashida’s latest book, Fall down 7 times, get up 8.

Photo © Paul Stuart

In Fall down 7 times, get up 8, there is an emphasis on selfimprovement and leaving your comfort zone – did that aspect appeal to you? I think that’s why Naoki appeals outside the world of autism insiders – both as a guide and as an informant, living inside an autistic head. There’s a slight ‘selfhelpy’ fragrance to his work that has an integrity that many consciously-written self-help books lack. It’s so transparent that it’s not his intention to do a selfhelp book, that when I feel myself nudged into thinking about what I want out of life, or what is a worthwhile or successful life for me, let alone for Naoki, I tend to give those thoughts space and more room because they’re from him. By expanding the definition of what

life is by including people with autism in our vocabulary of the mind and valid human experience, he, by default, is including ours as he asks us to include his. There’s a connectivity in his writing. It broadens horizons. It broadens mine and enriches my thoughts about the human experience – without that ever being his primary goal. But because it’s the secondary goal, it’s effective. You never feel manipulated by the non-fiction. Although in Naoki’s fiction, he’s well able to work out what the reader may be feeling at a certain point. It’s this which shows that the idea that people with autism have no theory of mind is a bit defunct. Otherwise how could he write something like that? In the non-fiction, there seems to be not an ounce of artifice. There is integrity. To me he seems to lack the capacity to lie. And knowing that slightly changes how you read him. Does Noaki give advice on managing change and trying new things? I couldn’t tell a parent what to do, as they know their child best. My son is actually fine with change and can actively seek change. So I couldn’t say how best to manage change if it’s something your child finds hard. Noaki doesn’t see himself as some sort of guru who has the answer for everything, so wouldn’t presume to advise others on

what’s best for them. It’s a case of take what’s useful, and leave the rest. How do you balance the protection instinct with encouraging your son to discover new experiences? For any parent, that protective instinct is incredibly strong, and we have kept him protected. I would say that with my son, he has been at his most engaged with his chin up after we have done something new, after the first time he went to London, for instance, or when we first flew to Japan. I’m not imagining it because his teachers noticed too. What child doesn’t have the right to experience those new things, like flying on a plane? But it’s whatever is best for your child at the time, and that’s not always clear. Trying something new may result in the biggest meltdown and the whole day to go up in flames. But also sometimes if you start out planning for the worst-case scenario, if it happens it’s a shame, but if it doesn’t, there will be lots of positives to take from it and it feels like a triumph. Naoki talks about too much praise making him feel trapped and as if the future was being ‘deferred indefinitely’. What can we learn from this? Since reading what Naoki says about praise, I have changed the way I give

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FEATURE • DAVID MITCHELL

“I hope we will look back and think, ‘What a criminal waste of human potential’” What advice would you give to other parents of children on the autism spectrum?

praise to my son. It’s very easy to overdo praise with someone who has autism and is non-verbal, but you don’t know how much someone may understand, and why would they want praise which could feel over-the-top or patronising? Why would anyone? I try to praise my son at the same level as I would for other children his age, in as adult a way as possible. There is a big difference in the way that you give praise, and I try not to assume that my register should be lower or more suited to a younger child. In terms of doing the translation, with this book and The Reason I Jump, it was absolutely vital not to prettify the text. I didn’t want there to be any accusations of another voice in there. My wife has been very good in helping me reign it back if there was even any instance of trying to tidy or neaten it up in any way. Noaki worries a lot about inconveniencing others. He is very self-aware and putting out other people seems to be a major cause of anxiety for him. Don’t you think this should dispel the still lingering myth that autistic people somehow lack in empathy? I would say too that Japanese culture plays a role here as well. In Japan, there is a great respect for space and privacy. There are clear levels of knowing someone – from acquaintance to friend, to close friend, as Japan has

AUTUMN 2017

such a vast population living in a small space, if there wasn’t this approach everyone would be on top of each other. So I think this aspect of the book may stem in part from the culture Naoki exists within. How can we carry on changing public understanding of autism? Influencing the interactions between the media and reality and pushing at how autism is seen by the world at large is important. You look back and to think we used to hang people for being gay. It’s appalling. But the narrative has massively changed now, out of all recognition, and while I’m on my revolutionary soap box, that’s what I think we need. We need 20 years for people to look back and see how people with autism are being handled or treated or funded or not funded now, and look in horror at how bad it was. Wouldn’t it be good if in 2037 people looked back and said, even in 2017 they thought this and were doing this? I hope we will look back and think, “What a criminal waste of human potential”.

Find out more

It’s often my own lack of flexibility, my own irritation that my beautiful planned-out day has been shot down in flames because of something going wrong, that I look back on and wish I could change. It’s how I react which causes the horrible part to worsen and last longer. I could have said nothing, and have just thought, “Okay, never mind, let’s try this another way”, and in half an hour things might have turned around. But your ego is something you can change. You have control over that. We can’t change the wind, but we can change the sails. Don’t be too hard on yourself. There will be times when you’d had no sleep (for nine years!) and your son is banging his head against the wall, and you’re not in the most calm and rational place. But being kind to yourself is also the best thing for your child, and that’s what should always come first. I hope that people who are working directly with autistic people will read Fall down 7 times, get up 8, because that’s what will make a difference to people’s lives, like my son. It’s the person who fits his shoe at the shoe shop. It’s people like them that I most hope will read the book. ●

• Fall down 7 times, get up 8 by Naoki Higashida (published by Hodder & Stoughton) is available now. • Read more about different communication strategies for nonverbal children and adults at www.autism.org.uk/about/ communication.

FEATURE • PARENT CAMPAIGNERS

Fighting for

the right care Jane Raca fought for years to prove that her son’s needs didn’t just stop in the school holidays. She writes about her struggle and what it takes to be a successful parent campaigner.

ames is now 17. He was born at 25 weeks with brain damage and spent four months fighting for his life in hospital. He has cerebral palsy, autism, learning disabilities, epilepsy and some challenging behaviour. He can’t walk or speak, or use his left hand. He is also affectionate, funny and bright, and we love him as much as anyone could possibly love their child. James had a statement of special educational needs from the age of two. He began attending a local special school as a day pupil, but by the age of five it was becoming very difficult to look after him properly at home, particularly as he has two siblings. THE LIMITATIONS OF THE SEN TRIBUNAL SYSTEM When James was little, education, health and care services seemed all completely separate. They didn’t liaise with each other. Social care in particular was chaotic; the children’s social care department kept failing Ofsted inspections. Although James was known to

James with mum and dad

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education and health services as a profoundly disabled child, we had no respite until he was five, even though we had been entitled to it since he was born. The first we heard of respite was when my husband and I broke down in tears at one of James’ routine appointments with his community paediatrician, because looking after him was so hard. She referred us to social services for respite and home support, but we got nothing for a year. In the meantime I had become suicidally depressed. James often woke in the night for hours and smeared and ate his own faeces, so I had broken sleep. He was terrified of leaving the house except to go to school and would attack us if we tried to take him out. We were all effectively prisoners and I was also trying to give his siblings a normal life. Our marriage almost broke down and both James and our eldest child were referred to mental health services. I concluded that we could not give James the structure, routine and therapy he needed at home. The only way he would get that would be to live permanently in a specialist residential environment and for us to be part of his life there. I didn’t realise that there were residential special schools with homes for the pupils on site, which is exactly what he needed. I asked social care for a residential placement and because they weren’t liaising with education, they thought I meant foster care. Eventually I found out about residential schools, and that the only way to get James into one was to prove

that his educational needs required a waking (24 hour) curriculum. The cost was very high and the council refused to fund it, so I took them to tribunal. I was advised by the barrister not to refer in any way to the difficulties of looking after James at home, as the only matters that were relevant were his educational needs. For that reason we were told we should only ask for a termly placement, which we won. The council’s response was to withdraw all support in the holidays! Despite proving that James needed daily therapy to help walk and communicate, and one-to-one care all the time, he now had nothing for 14 weeks of the year. At the same time, it was proposed that I could carry out therapy in the holiday, such as putting James in his standing frame and using pictures for communication. No one seemed to grasp that if I committed suicide I wouldn’t be there for James or the other children! There was no tribunal to appeal to, only a complaints procedure, escalating up to an ombudsman. It took us six years of going through these hoops, before the council officially accepted that he needed a 52-week placement, which is now funded on a tripartite basis by health, social care and education. James is happier, safer and more fulfilled than when he lived at home, and able to do things like come out with us for a burger, something he would have been terrified to do before. I visit him all the time. I monitor his haircuts and fruit intake, organise his medical appointments, and cuddle him.

James needed the structure, routine and therapy of a residential school

“Hearing that a pilot for the tribunal judges to make recommendations for health and social care needs is going to be rolled out had me dancing round the room!” STARTING TO CAMPAIGN In relation to campaigning for a joined up right of appeal to tribunal for health, social care and education needs, that began when I read the early drafts of the Children and Families Bill (now Act of 2014) and realised that whilst it laid down statutory requirements for liaison between the three services, the right to have an independent judicial ruling on children’s needs was still limited to education only. So what my family had been through could still go on happening. I had been writing a biography focusing on how my life had changed since having James, and all the things that had happened to us. I was just finishing it when I realised the issue with the draft bill. The book, which I titled Standing Up for James was launched in September 2012 and I ensured that copies were sent to the media as well as MPs and peers who were particularly involved with the bill. I was very fortunate that Standing Up for James was picked up by Amelia Gentleman at The Guardian, who wrote about me in January 2013.

That was then picked up by other media outlets. SUPPORT DURING THE CAMPAIGN Mencap used my evidence to brief key MPs and peers taking part in the debate on the Children and Families Bill. The National Autistic Society invited me to speak at an APPGA meeting in December 2013. The Minister in charge of the Bill for the Government, Edward Timpson, was present, as was his shadow counterpart. There was intense lobbying by the charities, and it was following that meeting that the idea was introduced for the pilot schemes

whereby SEND Tribunal judges could hear and make non-binding recommendations about social care and health needs. Hearing my book referred to in parliament during the debates about the bill made me feel that I had made a difference. I felt I had seen democracy in action and that although getting things changed was really hard, it was possible, particularly if people joined forces. And then hearing this year that the value of the pilots has been recognised and they are going to be rolled out across the country. That had me dancing around the room! At times I felt I was fighting a losing battle. I motivated myself to continue by taking a short break from campaigning as I was very tired. I also mentioned how I was feeling in an email to Tom Clarke MP, who got his aide to reply, “The journey of campaigning can be an unrewarding activity but it is a noble endeavour and whilst the path may become challenging at times, the destination, improving people’s lives, is worth the difficulty.” ●

Jane’s top tips on campaigning • Be clear on your objective. What are you trying to achieve and whose attention are you trying to get to make it happen? • Make friends of the media. They can help you. They need and want interesting stories. Approach them with yours. • Always be polite. If you get cross or rude, people have an excuse to stop listening to you. • Don’t give up! If it gets too much, take a break and then carry on!

YOUR AUTISM MAGAZINE

OPINION • SKY BOSWELL

Pitch perfect We paid a visit to see the Saracens’ autism-friendly rugby club in action. B Y F LY N N H A G E RT Y

Proudly displaying the team’s shirts

very Monday night, rugby is played at Allianz Park in North London. But it’s not the Saracens, winners of the last two European Champions Cups. At least, not the Saracens of Jamie George, Chris Ashton, Maro Itoje and Schalk Burger. Rather, it’s Sarrie’s RFC, the autismfriendly rugby club of the Saracens Foundation that is sponsored by Alan

Day Volkswagen, a local car dealership. Starting from just three kids three years ago, Sarrie’s has grown to nearly 20 young people aged 9-19, playing rugby on the Allianz Park pitch once a week. “We did some outreach work in local SEN schools and it has grown from there,” says Tomas Gamage, Rugby Participation Manager at the Saracens Sports Foundation. “We’re trying to create a rugby club vibe and it has gone very well.”

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2017

BUILDING SKILLS The Allianz Park pitch is a perfect home for the players of Sarrie’s RFC. Besides being a thrill to play on the same pitch as a worldrenowned rugby club, it’s also an artificial surface. No mud, no grass and perfect in any conditions, which helps reduce any sensory overload. Training at Sarrie’s looks like rugby clubs up and down the country. Boys charge tackle bags before lining up to pass the ball to the wings. Coaches shout encouragement and instruction while players banter with each other. But there’s a purpose beyond rugby. “We’re creating learning opportunities with consequences to them, so if somebody doesn’t put the effort in, the team might lose their game. We’re trying to connect that to real life, such as school, and getting the guys communicating about a game

FEATURE • RUGBY

“Our boys are side-by-side playing rugby with the guys they see on television or at games, which is big for them.” plan, something they might struggle with,” says Gamage. It becomes obvious quickly that Gamage has developed a programme that is serious about getting the best out of the players on the pitch and off. REAPING THE BENEFITS The training sessions last about an hour and a half during term time (Saracens players such as George and Ashton are regular attendees). The coaches work with the players, not just to improve their rugby skills, but to improve their communication and decision making skills. “We reevaluate everybody in the team and whether the programme caters for their needs as they grow older. We might focus on their communication skills as they enter their GCSEs, for example,” explains Gamage. Oneto-one support is provided for some players and while the coaches are focused on improving rugby ability, they also understand the need to let the players have a moment away from training to process and regather themselves before they’re encouraged to re-join the action.

Rugby isn’t the only disabilityfriendly provision the Saracens Foundation offers. There’s an inclusive running club in the summer, making use of the athletics track that rings Allianz Park. There’s also a disability dance provision upstairs in the executive suites. Sarrie’s RFC hasn’t just helped the boys, they’ve even created some new fans. “We’ve actually had a number of guys signing up as season ticket holders, and many have joined some of our other programmes,” explains Gamage. Every Christmas, there’s a mid-season party where the club celebrates its success, and in cooperation with their partners, they provide Christmas presents for everybody and a visit from one of the Saracens players. “Our boys are sideby-side playing rugby with the guys they see on television or at games, which is big for them,” says Gamage. Up in the executive boxes are the mums and dads, who get an hour to relax and chat with fellow parents about rugby and their children. A massage therapist walks around,

Coaches understand if players need a break from training

booking parents into much-needed neck rubs, provided by the Saracens Foundation. Joanne Callender is one of those parents. She has two sons on the autism spectrum, Jake and Oliver, who are on the pitch today. Jake also has ADHD while Oliver has dyspraxia and dyslexia. Joanne’s from a rugby family – she’s a Saracens season ticket holder – and she found out about the programme almost by accident. “I was really lucky, I saw the Foundation had a display during a match and thought, ‘Can my boys join in?” she says.

Sarrie’s has grown to nearly 20 young people, playing rugby on the Allianz Park pitch every week YOUR AUTISM MAGAZINE

FEATURE • RUGBY

Every Christmas, there’s a party attended by Saracens players too

PLAYERS ON TOUR As we talk, she points out her two boys. Jake, who is 17 and now plays senior rugby for a Hertfordshire club along with Sarrie’s, attacks a tackle bag. Oliver, who is 16, has wandered over to the side of the pitch. He needs a time out. “The team here are amazing, they’re very accommodating. They can provide one-on-one support and they give people space and time before encouraging them to come back to training, which is perfect for my boys,” says Joanne. She tells me why rugby works so well for her sons, in particular Jake. “When he was diagnosed with ADHD many years ago, we actively looked for things to get his aggression out. I took him to a rugby club at 10 and they were wonderful. The first session I went to, it was cold and wet and all the parents disappeared. I felt I had to be there, just in case it all went wrong! There was a big pile up and Jake came to me and said, ‘I like rugby, I can hit people and I don’t get told off!’ before running back into the mix!” she says. “What rugby has taught my boys

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“What rugby has taught my boys is discipline, respect and teamwork.” is discipline, respect and teamwork. Respect for the referee, coaches and teammates. All very important skills for everyday life,” she tells me. The weekly training sessions build up to an end of season classic: the rugby tour. Every year, Sarrie’s RFC goes on an away trip, taking in a Saracens away game and playing a local disability-friendly rugby club. The annual trip is beloved by players and parents. “We have a great

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time with a coach load of boys and parents. Lots of songs and Pimm’s and bubbles for the parents. All the mums wore silly red hats so you could see us on TV,” says Joanne. This year, the team went to Coventry to play a team from Wasps. “It’s a truly fantastic trip, and the progress the guys make both physically and socially is astonishing. We’re really proud,” says Gamage. The players made some new friends and exchanged goody bags with their opponents. Many of the Saracens players came to meet the boys after their game and took a selfie with them. With their efforts for young rugby players on the autism spectrum, Sarrie’s RFC is matching the standards set by Saracens RFC. ●

• Find out more about Sarries RFC at www.saracens.com/foundation/ inclusion/sarries-skill-club • Looking to help autistic children or adults participate in sport? Find out about our specialist training at www.autism.org.uk/activeforautism.

FEATURE • MY STORY

My story

Ameya’s musical heroes are Amy Winehouse, Eminem and Sia

Ameya Kohli The Kohli family live in Berkshire. Ameya Kohli, is a 13-year-old aspiring solo artist with Asperger syndrome. She already has four recorded singles to her name but it’s not an easy journey to the top. Ameya and her parents, Sanjeev and Nidhi, told us their story.

meya: I was always singing but by the age of seven I began to sing a lot more and enjoyed pop songs. Around then, my mum said she heard something special in my voice and, as I was so nervous and uneasy to sing in front of anyone, we just took very small steps. By nine, I loved the pop jazz genre and Amy Winehouse became my idol in terms of music style and vocals. I recorded my first single, Release me, when I was 11 and have just released my fourth. Singing really helps release my feelings. It makes me feel so much better when I’m upset or feeling a bit different. It helps me escape. I really pick up on the lyrics too. My own lyrics are particularly special to me. Initially,

Relaxing with dad Sanjeev

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I was nervous of singing in front of my family but with time that’s got much better. Sanjeev: Ameya’s original songs are written and composed by her mum, but it‘s Ameya’s story and feelings that run like a thread through them. Release me, the first single, is about Ameya’s struggle fitting in, the second, Daisy Chains, is a metaphor about friendships, and Unwired is about the workings of an unconventional mind. Nidhi: What stood out for me is that she started singing with her eyes closed and I realised the emotion she was putting into her songs. Apart from the quality of singing, she was just in her own world. We suspected about the autism long before that, but we knew this wasn’t the way every seven year old would relate to songs that are so deep. She has confidence between these four walls, but that confidence goes outside home. The videos for the singles are a family affair as it’s currently too uncomfortable for a stranger to come in. The studios are where we do the final recordings of her songs. They called her in for an audition and were so impressed they helped with her first two singles in terms of production. We still go there now to record original material and Ameya works with the same person each time. Initially, Ameya was reluctant to perform to extended family and the nerves were so bad she was shaking.

It’s been a gradual process – even now if you ask her to perform, especially to more than three or four people, she’s nervous instantly. Sanjeev: She sang at Westfield in London, but had a meltdown prior to going on stage. Each time is the same but she is determined to become a credible artist. She did absolutely brilliantly! Nidhi: I go through all the emotions with her. Every time she does anything like that, she suffers chronic anxiety and she almost makes me feel guilty that I encouraged her. Ameya: Afterwards, I’m really proud and pleased with myself that I’ve done it, but before is always the worst for me – it’s nerves that do that. They get really extreme – even while I’m performing I don’t calm down. I’m only relieved when I’ve finished. DIAGNOSIS AND SCHOOL Ameya: The diagnosis made sense to me and answered a lot of questions, like why I get nervous and feel afraid of things. I always saw myself as different from my friends, always left out and never partnered up for things. I felt different and didn’t fit in. Nidhi: It was difficult to find the right school. Hurst Lodge School, where she’s at now, is very nurturing and their motto is ‘it’s good to be different’. They want children to be happy over and above the academic aspect of school and so she gets social as well as academic support.

MY STORY • FEATURE

“Singing really helps me release my feelings. It makes me feel so much better when I’m upset or feeling a bit different.”

FEATURE • MY STORY

Ameya at the music studios

“The diagnosis made sense to me and answered a lot of questions, like why I get nervous” Even here, in her first year she’d have lunch in the locker room alone. Even though it’s a smaller school and other children have difficulties, she couldn’t find a way to fit in. She used to pretend she had lots of friends and that school was fine. She didn’t want it known that she was different or how she was suffering inside. When Ameya started at this, her sixth school, she said why don’t we just say I have Aspergers so at least they understand why I might act differently − which I thought was very positive. So, we started telling the school and families. It’s not something that we need to hide or be embarrassed about. So now, Ameya tells the school who she’d like to talk to and they find a separate room where they can go with a support teacher to have a chat. The teacher and Ameya can together try to explain how Ameya’s different and how she’d like to be accepted and make friends with the other students. Ameya: I found this quite difficult at first and hard to explain. They seemed a little bit confused, it’s such a complicated thing to understand. But afterwards, I did feel better knowing that they know. Nidhi: It’s the only way for people to change, if you explain to them what the problem is. Sanjeev: It’s giving her the patience, the space to answer a question at her own pace. Once you get across that barrier, kids understand it’s not being rude it’s just the way she may be. Ameya: My parents have been so supportive, they’ve got me through life, all my struggles and worries. But my extended family is different − they

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just don’t understand. Nidhi: When she tries to express herself, they can’t relate to it because no one else in the family has Aspergers. I’m forever sending information to help them understand and express Ameya’s emotions and feelings of loneliness, it becomes upsetting and frustrating. Maybe there’s a stigma with the Indian culture not to discuss certain subjects like autism, hence the importance of raising awareness. MUSICAL HOPES Ameya: I’d like to be a well-known solo artist and sing at the Royal Albert Hall. I’d have loved to sing with Amy Winehouse. Now it would be artists like Sia, Eminem or a soulful jazz singer. It would be a huge challenge but that’s my dream. Nidhi: Ameya understands Sia as an artist and that she hides behind a wig and doesn’t like to be seen. Eminem the rap star too who also

Find out more:

Ameya has released four songs

has Aspergers. She finds it upsetting that there aren’t many Indian pop stars she can look up to. But we want her to follow her own passion − and it would be great to see an Indian girl in the charts one day! Sanjeev: She’s got a stunning voice. It would be a travesty if the world didn’t get to hear it. And, if we can talk openly about her autism too, who knows what might happen… ●

• Ameya’s new single, Withering away is for her Grandad and reflects on losing someone very close. • There’s information about Asperger syndrome that you can share with family members at www.autism.org.uk/Asperger. • You can subscribe to Ameya on YouTube or follow her on Facebook at www.facebook.com/AmeyAKoh. • Read our advice on coping at school in breaks at www.autism.org.uk/breaktimes.

ADVICE • OUR ONLINE FORUM

Suzanne and her daughter Jordan

Celebrating our online community! Our online community has been running for many years and recently got a new look and feel. We invited three regular contributors to share their experiences of using it and the best piece of advice they’ve ever received.

“

have what’s called high functioning autism. The main facet aside from the bog standard social issues and sensorial issues is my severe aphantasia. I have no “minds eye” (imagine the opposite of a photographic memory), nor do I have an internal “sketch pad” or “visual holding area”. This affects my ability to hold information, or to conjure images. This makes reading any sort of descriptive prose virtually impossible. I’ve used the online community weekly for a few years. I am American and I am just recently married to a Brit and we will relocate to the UK soon. I enjoy the potential of professional and personal relations. As an American, my own people are embroiled in the conjecture surrounding autism. I do not like this. I enjoy The National Autistic Society’s approach, empirical science and pragmatism. I enjoy the short films and the educational materials –

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“I have learnt an enormous amount. Some from new ideas and references (books, internet) and some from seeing what other autistic people think and do.”

they are clear, crisp and informative. I have taken five of The National Autistic Society’s online courses. I am a teacher of little ones for 25+ years and such information really helps me – the courses are the most useful advice/information that I’ve received from the community. As someone with difficulties reading and writing, I find most online forums difficult to parse through. Your community has bits that I find simple to access and use without having to sift through seas of posts.”

Bill, Autistic adult

“My 20-year-old daughter Jordan has

Asperger syndrome. Joining the online community has given me the chance to not only share my thoughts and experiences but it’s where I can openly talk to others about my own experiences as a parent and share news of my autistic daughter’s recent achievements. I’ve been using it for a long, long time! I regularly use it to find information and support. I feel safe most importantly about openly sharing and enjoy helping and supporting those in need of some advice too. The support you find on the online community page is direct

The new interface is mobilefriendly

from people who have gone through or are experiencing something similar. Having the personal advice and support from others makes a whole world of difference. It has given me a sense of belonging, where I am understood and, above all, it has provided peace of mind. The single most useful piece of information I’ve ever got from it is quite simply...“You’re not alone”. Online communities are a definite and positive source of information.”

Suzanne, Parent

“The forum is a great idea and it can be a lifeline for people who are really struggling. I have tried to do

my bit, when time allows, to try and encourage people to be positive and to look at what they can do rather than what they can’t do. I have learnt an enormous amount. Some from being pointed at new ideas and references (books, internet sites etc) and some from seeing what other autistic people think and do. I recognise a lot of my own behaviour and traits in the other people’s comments − not all of it is admirable! But I have learnt a lot and tried to understand how I appear to other people and the forum is a good place for all of that.”

“RecombinantSocks”, Autistic adult

“It has given me a sense of belonging, where I am understood and, above all, it has provided peace of mind.”

Join in • Visit your online Community at community.autism.org.uk. On the new site, you can access the Community at any time from your mobile device, using your usual profile name and password. • The online Community is a great way for you to share your thoughts with other autistic people, their carers and relatives, as well as autism professionals. We hope you enjoy chatting with others! • What do you think of the new online Community site? Email YourAutismMag@nas.org.uk.

YOUR AUTISM MAGAZINE

ADVICE • PIP APPEALS

Appealing against a PIP decision In the final part of our series on PIP appeals, Jane OwenPam explains how to request an appeal and what will happen at the hearing. B Y J A N E O W E N - PA M

ersonal Independence Payment (PIP) is a benefit for adults who have difficulty or need help with certain day-to-day tasks. The National Autistic Society hears from a lot of autistic people who are having to challenge PIP decisions because they have been wrongly refused PIP or have been awarded too low a rate.

Important note if you have been awarded some PIP but believe you should qualify for a higher rate. Whenever you challenge a PIP decision, they can review the whole award, so it is possible that you could end up losing the award that you currently have. Be cautious and consider how strong your case is for being awarded enough points to get a higher award.

The reconsideration To challenge a PIP decision, you must first ask for a ‘mandatory reconsideration’. This is a review of the decision carried out by the PIP office. You can request this in

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writing or by phone, but you must request it within one month of the date on the decision letter. For more information about the mandatory reconsideration stage, please see my article in the summer issue of Your Autism Magazine, also available on YAM Extra at www.autism.org.uk/ magazine. It is very common for PIP decisions not to be changed at the mandatory reconsideration stage, but we are seeing a lot of the decisions being changed at the appeal stage.

Requesting the appeal Once the PIP office have carried out the mandatory reconsideration they will send you a new decision letter and you can now request the appeal. To request the appeal you need to complete and submit the appeal form. In England, Scotland and Wales the appeal form is called the SSCS1 form and in Northern Ireland it is called the NAO1(SS) form. There are links to download these forms at www.autism.org.uk/ benefitappeals. The appeal form must be received by the tribunal service within

one month of the date on the reconsideration decision letter. You can send in more information later on – the appeal form is not your final opportunity to explain things. In the section of the appeal form where it asks for your grounds for appeal you have to explain why the decision is wrong. For example, as a minimum you might say “The PIP decision is wrong because I do need lots of help with day-to-day activities and they have not properly understood my support needs.”

Representatives A representative is an adviser who is experienced in representing at tribunals and who knows about social security law. Organisations such as local advice centres, law centres and local authority welfare rights services often provide this service.

A representative may also attend the hearing

â&#x20AC;&#x153;Key to making a successful case for the appeal is to base your arguments on the points criteria.â&#x20AC;? A representative will explain the law to you, help you to collect evidence, present your case in writing and may also attend the hearing. You do not have to have a representative; the appeal process is set up to be accessible to a person without a representative. But you do have a better chance of success if you have representation. For information on how to find a representative, see www.autism.org.uk/about/ benefits-care/benefits.

Preparing your case Key to making a successful case for the appeal is to base your arguments

on the points criteria. You can see our information about the criteria and autism at www.autism.org.uk/pip. Start by identifying what descriptors and points you should have scored and write to the tribunal listing these and giving an explanation of why each one applies. If you have time, you can include this information with the appeal form. If not, send this information in later. Send in any information you can to back up the points you have identified. Any sort of information can be relevant as long as it relates to the points. Or you may have already sent in all the available

evidence, in which case it is still possible to get the decision changed by challenging how they have interpreted the existing information. Evidence can be anything that will help your difficulties and support needs be understood. It doesnâ&#x20AC;&#x2122;t have to be written specifically for PIP. Some examples are: diagnostic reports/assessments; information about current or past education support; care plans and assessments from social services; assessments, plans or letters relating to support needed at university or employment; a diary detailing the help needed and/or a copy of medical records.

The appeal paper Once you have sent in the appeal form, the PIP office will send a copy of the appeal papers to you and an identical copy to the tribunal. The appeal papers include copies of all the evidence they used to make the decision, including everything that you have submitted. When you receive your copy, read through it carefully and write to the tribunal identifying all the errors, omissions, and inaccuracies. Poor quality reports from the face-to-face assessment are often the cause of the incorrect decision, so it is important to point out any mistakes. Next the tribunal service will set a date for the hearing.

YOUR AUTISM MAGAZINE

Poor quality reports from the face-to-face assessment are often the cause of the incorrect decision, so point out any mistakes

The hearing You can either attend the hearing or have a paper hearing where no one attends and the tribunal decides the case by looking at the paperwork. If you live in England, Scotland or Wales you indicate your choice on the appeal form. If you live in Northern Ireland they will send you an enquiry form after you have received the appeal papers on which you indicate your choice. You have a greater chance of success if you attend the hearing as you will have the opportunity to answer any questions that the tribunal has. If you choose to have a paper hearing then you should make sure that you put everything that you want to say in writing and send this to the tribunal in advance. You can take a friend, family member or professional to the appeal hearing. They can support you and help you to explain your situation. If you have a representative they will often also attend the hearing with you. There are three people on the

â&#x20AC;&#x153;You have a greater chance of success if you attend the hearing.â&#x20AC;?

The tribunal members are genuinely independent and had nothing to do with the original decision. Do not take lots of extra evidence to the hearing; send this in to the Tribunal Service in advance. If you arrive with lots of extra paperwork, the tribunal are likely to postpone the hearing because they will not have time to read all the new evidence.

tribunal panel; a judge, a doctor and a person who has experience of disability. Occasionally the PIP office will send a presenting officer to explain why they made the decision. Tribunal hearings are not the same as going to court, it is more like a formal meeting. Hearings tend to be held in a large office room. There is usually a table, you and anyone you bring with you sit on one side, and the tribunal members sit on the other side. The tribunal should consider all the facts, evidence, and law relevant to your case. They will ask questions to help them to understand the situation and make a decision.

When will I get a decision? Usually you are told of the decision at the hearing and you are given a decision notice confirming it. If the tribunal are not able to give you a decision on the day, the notice should be posted to you.

Further help

â&#x20AC;˘ For advice about PIP appeals, contact our helpline. See www.autism. org.uk/services/helplines or call 0808 800 4104 to arrange a telephone appointment.

YOUR AUTISM MAGAZINE

The service supports young people preparing to leave school, and those finishing higher education

Spotlight on transition support services

How can our charity help you? The journey into adulthood can be a challenge for many people on the autism spectrum. Transition Support Service Coordinator, Rachel Babbidge, explains how our transition service helps young autistic people and their families to get ahead.

hat is a transition support service? Our transition support service is a telephone and email service that provides free and confidential information and advice on the transition into adulthood. The service can provide one-off advice as well as ongoing support. Wherever possible, families are supported by the same adviser for as long as they use the service. Who is it for? We support autistic people aged over 14, including parents and carers looking for information and advice on the transition to adulthood. This includes young people preparing to leave school, as well as further and higher education. We currently have specialist advisers in England, Scotland, Wales and Northern Ireland, as the law surrounding transitions is different across the UK. What is your main goal? We aim to help young autistic people and their families to feel empowered to voice their wishes to professionals. We do this by providing the support,

information and advice they need to make informed decisions about the future, so that they can go on to live full, happy and independent lives. What support do you offer? We can provide support on a variety of issues, including young people’s rights and entitlements when transitioning to adulthood, assistance with exploring future options so that informed decisions can be made, and help to find suitable provision. We also give advice about making a complaint and dealing with the appeals process. What issues do you regularly deal with? We tackle a variety of issues each day, offering advice and support to young people and their families so that they can explore and identify all of the available options. We also support young adults who have finished further or higher education and are looking to move into their own homes or find valuable employment. How are you funded? We are funded by John and Marianne

Swannell and friends as part of their aim to transform the future of young autistic people and their families. You can find out more about the Transforming Lives Project at www.autism.org.uk/transforminglives. ●

“The advice and support I received from my adviser has made all the difference. I now have the knowledge and understanding to see the way forward.” —

Person who used the service

Did you know?

You can also find lots of helpful information about transitions and the support we can offer by visiting www.autism.org.uk/transition.

YOUR AUTISM MAGAZINE

RESOURCES

Making sense: a guide to sensory issues AUTHOR: Rachel S Schneider PUBLISHER: Future Horizons PRICE: £11.95 VERDICT: A helpful resource for autistic adults with sensory issues. WRITTEN BY AN ADULT with sensory processing disorder (SPD), this book gives a useful overview of sensory issues and how they affect people in different ways. The author describes how sensory issues may be misdiagnosed as other mental health conditions, for example panic disorder. She also includes a useful chapter on strategies that people may wish to try in order to overcome some of the difficulties associated with SPD. I think the information is set out in a user-friendly and accessible way, and it would be particularly useful to adults who are themselves struggling with sensory issues (including those who also have autism).

Giveaways To win a copy of To Siri with Love by Judith Newman about her autistic son, Gus, email yourautismmag@ nas.org.uk with your name by 8 September quoting ‘Siri’. The winner will be announced in the next issue. The winner of last quarter’s competition to win The healthy coping colouring book and journal: creating activities to help manage stress, anxiety and other big feelings is Fiona from Manchester. Congratulations!

Become a reviewer

Would you like to join our reviewer list for books and products? Email us at YourAutismMag@nas.org.uk.

Reviewed by Debra West, Your Autism Magazine reader

Our six favourite… fidget toys

CUBE IN POCKET Fidget toys can tackle stress and boredom when out and about. One of our branch members says, “The cube in pockets are popular in our house, especially when going out.”

TANGLES Tangles are a learning aid, and a puzzle/tactile toy, with no beginning and no end. They are a great therapy device for those with sensory and concentration issues and can help in the development of fine motor skills.

ALUMINIUM FIDGET SPINNER Pleasingly heavy, silver or gold fidget spinners are a popular choice. They can distract children and adults, helping to reduce stress and anxiety.

Our six favourite continues onto page 45

YOUR AUTISM MAGAZINE

RESOURCES

Sexuality and severe Sometimes autism: a practical guide noise is big for parents, carergivers and health educators AUTHOR: Angela Dunn

PUBLISHER: AuthorHouse PRICE: £14.95

VERDICT: A great conversation starter

AUTHOR: Kate E Reynolds

for you and your child

PUBLISHER: Jessica Kingsley Publishing PRICE: £15.99 VERDICT: A good guidance book for parents of

autistic children THIS IS A REASONABLY priced short book aiming to provide behavioural guidance to parents of children with autism. The book establishes key relevant concepts and is clearly written with bulleted advice for parents. The concepts are contextualised within contemporary legal developments and there is some reference made to appropriate literature which some professionals may find useful in designing and implementing educational interventions. For interested professionals, it would be best considered an introductory text. I am a psychologist and so, perhaps rather unsurprisingly, I felt the text would’ve benefited from the concepts discussed with psycho-social factors at the fore and, because of this, a good book failed to be excellent, especially with regard to explaining such a complex and sensitive topic.

I READ THIS BOOK a few times with my son James, who is 12, and on the autistic spectrum. It was good to think of the book from his perspective as well as mine. I think every child on the autism spectrum and their parents/carers should read this. Of course, not everyone on the spectrum will experience all the things mentioned – but it really is a great insight and acts as a great conversation starter with your child. I asked James to review the book with me but he had YouTube to watch, and his only comment was, “It’s a great representation of kids with autism!” Reviewed by Gill Jagger, Your Autism Magazine reader

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

Reviewed by Dr Phil Moore, Clinical Psychologist

WATER BEADS IN A BALLOON Not as portable but useful in play and groups are water beads in a balloon. Another branch told us, “Water beads in a balloon are a hit with some of our children’s group.”

PUTTY OR PLAY-DOH Fidget toys don’t have to be complicated or even shopbought. One parent told us, “George has a ball of putty he likes to take places. It’s not a fidget toy but works for him.”

THE NATIONAL AUTISTIC SOCIETY’S TRI FIDGET SPINNER Love them or not, fidget spinners have proven extremely popular, both for stress relief and as a fun toy. We’ve even produced our own version.

Find more ideas at www.autism.org.uk/toys.

YOUR AUTISM MAGAZINE

NATHANIEL’S STORY

Nathaniel proudly displaying his award

I’m an… archaeologist Nathaniel Tegg is a budding archaeologist with Asperger syndrome. At 18, he’s already won a Young Archaeologist of the Year Award. BY ALICE TODMAN

Silchester in Hampshire

AUTUMN 2017

athaniel was diagnosed in 2009 after a few years of behavioural and social problems. His Asperger syndrome mainly affects his anxiety. He says, “I can get quite anxious about how I come across to people and I can overthink too much.” He says he was lucky to get lots of support from his secondary school’s specialist Asperger resource. He got into archaeology through making trips to Silchester in Hampshire with his dad from the age of eight. They used to look for ‘disturbed finds’ – finds which are on the surface or in rabbit holes or mole hills. Silchester also led to Nathaniel’s Marsh Archaeology Award for Young Archaeologist of the Year. He won for his research into some of the buildings at the site, specifically a possible temple. Nathaniel feels honoured and surprised about the award. He says, “I really love archaeology and ancient history and I am proud and humbled that my passion has been recognised.” Naturally, his dad and his family are also very proud of him. Nathaniel says,

“My friends also are really supportive and really like to listen about my awards.” The teenager thinks archaeology helped him cope with his Asperger syndrome. He says that having an interest helps, and archaeology covers many interests. “It’s a lot of fun and really helped me to socialise as I was able to take friends along and teach them how to find stuff and identify stuff.” This interest led to Nathaniel working with autistic children at a local youth club called Auticulate. He used to attend the club before becoming a volunteer, helping children up to secondary school age learn different social activities, such as visiting town. Nathaniel aims to be a role model for other young people with Asperger syndrome. He says, “I now volunteer at a Young Archaeologists Club at the University of Reading helping children share their passion for archaeology.” Once he’s finished his A-Levels, he hopes to study Archaeology and Ancient History at the University of Reading. Nathaniel’s advice to other young people with Asperger syndrome is, “keep being you and doing what you love to do and be proud and confident in yourself.” ●

• If you’re 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.