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Autism YO U R

TONY ATTWOOD on treating depression using CBT

Proving parent power Inspiring mother and volunteer, Esther Fletcher



VOL 50 – NO 4 • WINTER 2016


PLUS special supplement on growing independence

POKÉMON GO IN THE CLASSROOM Gaming to aid learning

“Now, I’m a confident woman” How opera singing transformed Sophia’s life

Winter 2016 EDITOR Eleanor Wheeler WRITERS Alice Todman, Genevieve Sandle and Sophie Clarke.


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


A DV E RT I S I N G James Pembroke Publishing Tel: 020 3859 7100 SUBSCRIPTIONS Only available to members of The National Autistic Society C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 DESIGN James Pembroke Publishing PRINT Wyndeham Grange Tel: 01273 592244 The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine 2016 Winter Vol 50, No 4 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.



elcome to the winter edition of Your Autism Magazine! You’ll find a real range of inspirational stories in this issue, including opera singer Sophia Grech’s incredible journey from isolation and despair at school to touring the world as a world-class musician (page 16). We’ve also got café worker Dan’s story of how he’s developing his skills for the workplace (page 46). Don’t miss our exclusive interview with author Corinne Duyvis about her latest novel (page 28), and advice from world-leading expert Tony Attwood on how CBT can help with depression (page 37). As ever, we love to hear from you so get in touch at I hope you have a lovely holiday season.

Contents 04 News 10 Research in focus 12 Readers to the rescue 14 How do I… challenge discrimination at work? 16 Feature: my story 21 Feature: Pokémon Go in the classroom 25 Interview: Esther Fletcher 28 Interview: Corinne Duyvis 33 Advice: self-injurious behaviour 37 Advice: CBT for depression 41 Spotlight on support: EarlyBird 44 Reviews 46 I’m a… Café Autisan worker

Eleanor Wheeler EDITOR

Visit our Facebook page YourAutismMagazine


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A round-up of the stories that affect you IDENTITY THEME AT AUTSCAPE 2016

In September, more than 1,600 people attended the 11th International Autism Europe Congress, held in Edinburgh. The Congress brings together autistic people, parents and families, professionals and academics, to share knowledge and practice. The theme this year was ‘Happy, healthy and empowered’, encouraging work into improving the quality of life of autistic people and their families. Topics addressed included wellbeing, coping with anxiety, eating disorders, legal capacity, co-production, strategies to improve practice in schools and services, and many others. Keynote speakers included Dr Wenn Lawson, Professor



Liz Pellicano, Dr Peter Vermeulen and Professor Roy Richard Grinker. A fascinating panel debate on ‘cure vs. acceptance’ was led by Virginia Bovell and chaired by journalist Saskia Baron. There were also some superb practical workshops, with topics including assistive technology. It was great to see a good number of autistic people leading sessions and in attendance at the Congress. There was also a lively autistic fringe event on the opening night and retreat space led by autistic people. Key talks from the Congress will soon be available at: www.

Colour-coded badges at Autscape help attendees control how they interact with others

Photo © Nat at

Autism Europe Congress

The annual Autscape conference returned to the picturesque setting of Giggleswick School this summer. Having started in 2005, it’s the longest-running event in Europe run by and for autistic people. Although non-autistic people are welcome, the conference is primarily designed to meet the interests, needs and sensitivities of autistic people. The theme this year was ‘identity’. Spanning three days, it featured presentations, workshops, discussion groups and leisure activities – including an entertainment evening and ‘sparklies in the dark’. Damian Milton, Head of Autism Knowledge and Expertise at our charity, was there. He says, “My favourite presentations came from two pioneering figures within autistic culture – Dr Larry Arnold and Martijn Dekker. You can see for yourself what they covered at programme/presentations. “Most importantly for me though, Autscape was a chance to see old friends again and indeed, to make some new ones.” Find out more at:


Hannah and Jon ready to lead the peloton past the Eiffel Tower


Hannah, cycled 339 miles from London to Paris this summer on a tandem bike. Hannah is autistic and has learning difficulties. She and her dad cycled to raise money for our charity with a company called Global Adventure Challenges. Jon says, “This ride was a 10th anniversary ride of one I did with The National Autistic Society when Hannah had been recently diagnosed with autism. I had such a fantastic time on that ride, I always said that I wanted to do it again ten years on. At that point I never thought that we would do it together on a tandem.” Jon and Hannah were the only people riding a tandem in the group of 145 cyclists. Despite some technical difficulties as they cycled down to Dover with punctures and snapped chains, help from the mechanic meant they were able to continue the ride. Cycling through northern France, Jon says, “Our route took us across the battlefields

of the Western Front and I found it very moving as we cycled across the Somme passing the poppy fields, memorials and cemeteries on the way.” On the last day, the group came together at the Louvre in Paris before finishing the final leg together. Jon says, “When Hannah and I arrived late at the Louvre following two more punctures in the last ten miles into Paris, everyone was cheering and clapping. This really brought a lump to my throat and I felt like I must be dreaming. The group gave us the great honour of leading the final part of the ride past the Eiffel Tower.” Jon and Hannah’s fundraised total stands at an incredible £3,300. Jon wants more people to see that being autistic doesn’t stop you achieving your goals. He says, “Hannah loves sport – especially cycling – and it was her ambition that was the driving force behind this adventure. I wanted to share how proud I am of Hannah.”

EXPLAINING AUTISM TO 9-12 YEAR OLDS In the face of all the jargon out there, understanding what your brother or sister’s autism diagnosis means, and what to make of it, can be daunting. We have a new book, written by a mum of a nine-year-old on the autism spectrum who is also an autism professional, which explains what autism is all about in a clear and encouraging way. Get your copy of Everyone is different from December at CHRISTMAS CONCERT ON SALE NOW This year’s annual Stars Shine for Autism Christmas concert in aid of our charity promises top quality singing in a beautiful, festive setting. EC4 is a choir made up of highly skilled amateur musicians who work in the City of London. The concert is on 7 December at 7pm at St Clement Danes Church, The Strand, London. Book your tickets at NOTTINGHAM COMEDY FESTIVAL SUPPORTS OUR CHARITY This month, the 8th Annual Nottingham Comedy Festival will see comedians like Billy Connolly, Lee Nelson and Tom Wrigglesworth performing across the city. With over 100 shows – ranging from stand up and improvisation to sketch – the festival aims to raise awareness of autism. Book tickets at

World Autism Awareness Week 2017 is on its way! This year, we’ve created free packs for everyone – whether you’re getting involved at school, at work or in your local community – with tailored activities, fundraising ideas and information. Download your free pack at Start making your plans for 27 March-2 April YOUR AUTISM MAGAZINE



James at work, cutting Mason’s hair

Elaine Nicholson awarded MBE

AUTISM BARBERS ASSEMBLE IN PAISLEY This summer, a group of nine barbers with a special understanding of autism assembled in Paisley to cut the hair of around 40 autistic children. Hairdresser James Williams – known as ‘Jim the Trim’ – organised ‘Autism Barbers Assemble’ to share his special technique with other barbers in the UK. Haircuts can often be extremely distressing if you’re autistic due to sensory difficulties. So James developed a special technique. First, he lets his customers make themselves comfortable. Only then does he find a way to cut their hair. This might mean lying or squatting on the floor, or even following the child about. A video of James cutting a little boy called Mason’s hair went viral earlier this year. Director of The National Autistic Society Scotland, Jenny Paterson, says, “I am absolutely delighted that James and his Autism Barbers assembled in Paisley. I hope that hairdressers and barbers across Scotland will be inspired by his technique.”

Elaine Nicholson, founder of Action for Asperger’s, says she is ‘delighted’ to have been awarded an MBE for services to education and Asperger syndrome in this year’s Queen’s Birthday Honours. Action for Asperger’s – a unique charity providing specialist counselling for lives affected by autism and Asperger syndrome – was established in Elaine’s Northamptonshire home in 2008. It moved to offices in Barnwell four years later. In its first year as a formal charity, its number of clients increased from 20 to 480 and in 2015 it moved again, to larger, seven-roomed Elaine was honoured for founding Action for Asperger’s

premises on the Corbygate Business Park. Today, Action for Asperger’s has more than 1,400 clients across the UK. The charity also runs outreach surgeries in North Yorkshire, North Wales and Birmingham. Around five per cent of its clientele come from overseas and receive counselling via Skype or Facetime. Action for Asperger’s also provides school and college counselling for autistic children and teenagers. The day before she heard about her MBE, Elaine was informed that she was to become the 551st ‘Point of Light’ – a title awarded by the Prime Minister to outstanding individuals making a change to their community. The Prime Minister at the time, David Cameron, wrote to Elaine to say: “You have dedicated yourself to raising awareness and understanding of how best to support people with Asperger syndrome and other variations of autism. It is wonderful that, through Action for Asperger’s, you are using your considerable skills to support over a thousand people.” by ADAM FEINSTEIN

‘Penguins’, award-winning design from autistic artist, Ruth Mutch

Have you got your Christmas cards yet? There are lots of lovely designs to choose from in our online shop. Whether you prefer a crowd of adorable penguins, a snow-sprinkled dog, or three kings on their way to Bethlehem, there’s something for everyone. And you’ll also be donating valuable funds to our charity. See the selection at 6



The centre has a sensory centre and a pool

Only 16% of autistic adults are in full-time work

NEW HOLIDAY APARTMENTS FOR FAMILIES Last month, parents Elaine and Colin Pratt opened Hartlands, a holiday centre on the Isle of Wight for autistic guests. Their son, Thomas, is on the autism spectrum and the couple were first inspired to undertake the project by the fact that going on holiday as a family was such a challenge. They started planning the project in 2010 and applied to appear on the BBC’s Escape to the country. To their surprise, their application was successful and they appeared on series 12 of the programme (see escape-12-20). With the help of local volunteers and businesses, and having sold their home in order to finance the project, they went

News in brief

about converting the run-down hotel they had purchased into a set of apartments suitable for autistic visitors. Their hope is that it will eventually become a centre of excellence for the autistic community. Isle of Wight branch officer and parent, Jess Higgins, helped advise on aspects of the centre, along with psychologist Vivian Hinchcliffe. Elaine and Colin hope having Hartlands open will mean the local autistic community will have a unique place to go where they will feel welcomed and relaxed. Learn more at http://

Our new school will prepare young people for a working future. The new Anderson School in Chigwell on the Enterprise Campus will support locals aged 11-19 from September 2017. Read more at enterprisecampus.

EMPLOYMENT FOCUS FOR MAJOR CAMPAIGN This winter, our Too Much Information campaign is focusing on employment. Some workplaces are full of too much information; too many sounds, lights, stares, glares. Without more understanding from employers and the Government, autistic adults will still be left behind. Read more in the Growing Independence Supplement or visit www.

NEW SERVICE FOR AUTISTIC ADULTS IN SCOTLAND This year, our charity launched its first ever service in West Lothian, thanks to funding from the Health and Social Care Alliance Scotland. Delivered in partnership with West Lothian Council and supported by NHS Lothian, NASplus aims to bring autistic people together to learn social skills, build friendships, and take part in social activities. Learn more at


NEW AWARDS FOR GREAT MEDIA Our charity has launched Autism Uncut, an awards ceremony to celebrate the best of TV, film and media that gives the public a greater picture of autism, the person and what to do. Autistic people are often misrepresented, stereotyped, or simply cut out altogether by the media. To address this, we’re inviting filmmakers, film students and professional filmmakers to create original short films, to shed light on the real world of autism – uncensored and uncut – to help more people understand it. We also want to hear about journalism, TV, plays and other media that improved autism understanding in 2016. If you read a great article or watched an outstanding TV programme about autism, why not nominate them for an award? Submit an entry or make a nomination at or email A chance to share your ideas on autism in film

Golden Bear Toys have kindly donated some toys to give away to one lucky reader. Sands Alive Castle Set contains super-soft play sand and four castleshaped moulds, a tray, a paver and a roller. Mr Tumble’s Fun Sounds Musical Car has seven interactive features – including engine sounds and a singing driver – as well as four Makaton cards. Both toys are suitable for children aged three years and over. To win, email YourAutism Mag@nas. by 8 December quoting ‘Golden Bear Toys’.




UK’s First Online ABA Therapy



(ABA) is a scientifically-based intervention. It’s proven to be effective in bringing about meaningful and purposeful change in behaviour for people with Autism Spectrum Disorder (ASD). However, the cost of accessing support programmes means it is out of reach for many families. This is where technology is starting to make a big difference in the field of autism – as it has right across healthcare for decades. After all, telepractice has been used for years as a way of linking clinicians with patients, providing help and guidance via video conferencing, for example.

DIY ABA Meanwhile, parents are already turning to self-service provision. Many are now educating themselves to deliver programmes, often designed and overseen by a consultant who attends as frequently as budgets allow. The main benefit of such programmes are cost related, although some parents also feel empowered, knowing they have new skills to help their child. But DIY ABA isn’t for everyone. Parent forums frequently discuss the merits of having someone else in the family home and the need for respite, but where the alternative is not accessing the benefits of ABA, there are many families who are keen to try it.

DIY ABA PLUS ABA Pathfinder from Beam was created in collaboration with parents, and is the first online ABA service in the UK for children, youths and adults with autism and other behavioural needs. It is specifically designed to be an affordable service.

And is built upon clinical best practice. It brings a BCBA accredited Beam consultant into the family home using video technology. A unique library of specially created eLearning builds parents’ understanding of ABA and of how to implement ABA procedures and strategies. Data is collected via an app on a phone or tablet. This means parents are able to stay in more frequent contact with their consultant, who in turn has immediate access to live data collected by the parent. The consultant’s role is to: design a person-centred ABA programme which identifies the individual’s target skills and behaviours to develop; offer support and guidance to the parent as they implement the programme; to analyse progress against goals set; and to regularly revise and review the programme. The parent’s role is to implement the programme under the guidance of the consultant, collecting data against identified criteria. In this way the parent and consultant work together to develop skills which meet learning outcomes and objectives.

BUILDING INDEPENDENCE FOR HIGH-FUNCTIONING INDIVIDUALS ABA Pathfinder is also an accessible method of intervention for high-functioning youths and young adults with autism or other behavioural needs. Selfimplementation can help to reduce the stigma associated with individuals having a support worker at college or university. It also helps to grow independence and confidence. Find out more at pathfinder

Research in focus Bringing you news of the latest research into living and working with autism Children’s experiences of school exclusion and re-integration The Centre for Research in Autism and Education (CRAE) has conducted new research about the realities of being excluded from school and the ways in which professionals can work with young autistic people to get them back into school. Children and young people on the autism spectrum are at increased risk of being excluded from school. In fact, one quarter of autistic children have been excluded from education at least once – some, many times. Researchers at CRAE worked with a group of young people who had been excluded from education and were being re-integrated into school life within the Inclusive Learning Hub at our charity’s Robert Ogden School in South Yorkshire. This Hub provides a supportive environment for educating autistic children with the most complex behaviours. GATHERING INFORMATION

Over a six-month period, researchers asked the young people about their experiences in their previous schools, how they felt about learning in the Hub and their aspirations for the future. They also had in-depth conversations with their parents and asked teachers and school staff about the strategies and methods they used to re-integrate these young people into school. FINDINGS

• The young people reported often

harrowing accounts of their previous



More should be done to prevent exclusions in the first place

educational placements, which meant that they missed out on school. This had serious consequences on their mental and emotional wellbeing. • The Hub is greatly appreciated by these young people and families, with dedicated staff who understand and accept the students’ individual needs and challenges, and go to great lengths to accommodate them. • The success of the Hub shows what is possible, but also reminds us that practitioners need to take a preventative approach, identifying what supports need to be in place to assist these young people far sooner. The researchers found the negative accounts of young people’s previous school experiences deeply concerning and believe educational authorities and school staff must create opportunities

for autistic children well before they reach a facility like the Hub. Lead Researcher Liz Pellicano says, “We need schools to be attentive to, and accepting towards, the unique needs of individual children. It’s also vital to foster relationships between the young people and their parents, and to work together with other agencies, including health and social care, to promote the well-being of autistic students.” She adds, “This is not just good practice in autism education, but good practice in education more broadly.” ● • Read the full report, Back to school: Paving the path to re-integration for autistic children previously excluded from education, at


Long battles for the right support are still a common experience

Latest autism research priorities list topped by mental health An initiative to define the top ten autism research priorities for the future has found mental health interventions come out on top. The project was led by autism research charity Autistica in collaboration with the James Lind Alliance and other organisations, including ours. We aimed to work with all those who understand autism to find the areas of research that people felt were the most important. Autistic adults, families, charities and clinicians came together to identify the ‘unanswered questions’. The resulting top ten priorities were decided as follows: 1. Which interventions improve mental health or reduce mental health problems in autistic people? How should mental health interventions be adapted for the needs of autistic people? 2. Which interventions are effective in the development of communication/language The second research priority was communication

skills in autism? 3. What are the most effective ways to support/provide social care for autistic adults? 4. Which interventions reduce anxiety in autistic people? 5. Which environments/ support are most appropriate in terms of achieving the best education/life/social skills outcomes in autistic people? 6. How can parents and family be supported/educated to care for and better understand an autistic relative? 7. How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are appropriately diagnosed? 8. How can we encourage employers to apply personcentred interventions and support to help autistic people maximise their potential and performance in the workplace? 9. How can sensory processing in autism be better understood? 10. How should service delivery for autistic people be improved and adapted in order to meet their needs? • Find out more, including

what happens next, at research/top10.

THE SEND REFORMS: READ OUR SCHOOL REPORT The National Autistic Society has published a new report looking at how well the special educational needs and disability (SEND) system in England meets the needs of autistic children and young people. The research, based on surveys of around 1,000 parents, carers, children and young people, found what was promised by the Government has not yet happened for many families. Two years on from the introduction of a new SEND system, many parents and carers still face long and exhausting battles to get the education and support their children need. The Government’s promises – that it would be easier for children to get support, that services would work together more effectively, and that there would be less conflict between parents and local councils – have yet to become a reality for many people. We are calling on the Government and local councils to reduce delays in assessing children and providing support, review the mix of schools and services for autistic children in each local area, and look at whether more resources are needed. • Read the full report at schoolreport2016. Know any teachers? Make sure they are signed up to myworld to get free autism advice.

Find out more or get involved • Read the autism research in the Autism journal at Members of The National Autistic Society get a 30% subscription discount. • Could you support vital research work? Visit to find out more.



Readers to the rescue!


For expert advice and information

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

0808 800 4104

The right time to discuss diagnosis depends on the individual MY SON has been diagnosed recently. I want to talk to him about it but I’m not sure where to start. Does anyone have any advice? – Parent HOW YOU talk to your son about the diagnosis would depend on his age and level of understanding. My suggestion would be that if you haven’t already done so you read Neurotribes as it puts autism in the context of normal human neurodiversity, so that you feel confident in yourself that autism is not a negative or unusual thing, just an aspect of how your son’s brain works that needs to be understood to help him thrive. – Caroline

I AM NOT sure from your question whether your son is a child who does not know his diagnosis, or a young adult who does. If it’s the former, this might be helpful. We used to wonder how to tell our son that he had a diagnosis of autism – it seemed such a big thing to do, and we were unsure of his reaction. In the end, he has learned about autism little by little rather than all at once. We talked about the fact that everyone has some difficulties and some things that they are better at. When our son was eight, we were chatting about the fact that some children do not make friends easily, and my husband mentioned that autism is one reason why some people find it hard to make friends. My son

asked, “Have I got autism?”, “Yes”, my husband replied, “and I do too”. They talked about some of their special powers, the things they are good at, and then moved on to a different topic. For more ideas, see the web page https:// articles/telling_a_child_ about_his_asd and the books My Autism Book: A Child’s Guide to their Autism Spectrum Diagnosis by Durà-Vilà and Levi and I am special: Introducing children and young people to their autistic spectrum disorder by Vermeulen, both from Jessica Kingsley Publishers. -Debbie Debbie wins a copy of In a different key by John Donvan and Caren Zucker. • Neurotribes by Steve Silberman is available from all good book shops. • Autism: talking about a diagnosis by Rachel Pike and published by our charity is available from http://www.autism. Members get a 10% discount.

Help me next!

My son is now 31 years old but still wets the bed at night. He is also prone to an adverse reaction when people around him are coughing. I would be grateful for any advice. — Parent SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of graphic novel Something different about dad: how to live with your amazing Asperger parent by Kirsti Evans and John Swogger.

Post your problems or answers on Facebook ( Magazine), email, 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.* *Read full terms and conditions at



How do I...

challenge discrimination

at work? communication. We may not speak, may not ask for help, or may ask endless questions. To remove these barriers, employers can make sure their communication is straightforward and given in manageable chunks, does not rely on tone, gestures or facial expression and is in the worker’s preferred format.

Most autistic people want to work, but often encounter difficulties in the workplace which employers can address better. Author and workplace trade union representative Janine Booth, who is on the spectrum herself, outlines her ten examples of barriers for autistic people at work, and offers advice for removing them.




dvice to autistic people on getting and keeping a job usually involves tips on ‘acting normal’ in order to ‘fit in’ at work. But what if, rather than changing ourselves, we change our workplaces? What if we demand that employment fits all workers rather than autistic people fitting ourselves into jobs which are often distressing, discriminatory and disabling? What if, rather than listing autistic traits and the problems they cause at work, we list the problems that workplaces cause for autistic workers? Perhaps then we can change the situation where shockingly just 16% of working-age autistic adults have a full-time job. The social model of disability identifies barriers that society puts in the way of disabled (in this case, autistic) people’s participation. It aims to remove barriers which prevent us accessing work and services and living independently. Let’s apply this model: identify barriers and remove them. Only a fraction of issues can fit in this article, so these are just examples.




Getting work

Job adverts often use jargon. Interviews may have sensory distractions, use sloppily-worded questions, and judge applicants on social behaviour such as posture. Employers can remove these barriers by advertising jobs clearly, using practical tests and allowing autistic applicants to have an interview companion. The Government can do more to support autistic job-hunters.


Getting on with the job

Once you begin a job, the induction you get may not cover social issues. Training may not recognise autistic learning styles. Employers may not recognise our abilities. To remove these barriers, employers can give information in advance, train managers about autism and provide a support worker or mentor to offer assistance.


Communication Autistic workers may prefer written or visual

Social interaction

Workplaces often demand intense social interaction, which can be difficult if you’re autistic. Employers can provide space to de-stress, and – importantly – they can accept us for who we are: if we skip along the corridor or rock on our chairs, what’s the problem?


Sensory issues

Autistic people’s sensory experiences can be more (or less) intense than those of nonautistic people. To address this, employers can make it possible for each worker to control his or her sensory environment. They can alleviate difficulties with light by using full-spectrum light, sound by using noise-cancelling headphones, smells by shielding work spaces from canteens, and fabrics by allowing people to wear comfortable clothing.


Organising work

Many workplaces have rigid work schemes, causing autistic workers difficulty managing time or prioritising. To stop this being a barrier to autistic employees, it’s important to offer more control over their work. Offering practical tools such as visual timetables and apps, and allowing staff to explore ideas and go at their own pace, will also help.



The trouble with managers

Managers may know little about autism, show favouritism, communicate inappropriately, or be too bossy. To make sure this isn’t a barrier for autistic people getting on at work, employers can make sure managers understand autism and avoid disabling behaviour – such as not providing enough processing time or giving vague instructions. Going further, we could question assumptions about authority at work, and reorganise work on a democratic, collective basis.


Bullying and harassment

Bullies target people who seem different, whether they know their victim is autistic or not. Bullies often have authority over victims. Employers can adopt an anti-bullying policy which includes designated people to contact if you are being bullied, taking complaints seriously and offering support from an autism worker and/or union representative.


All change!

Unexpected change is hard to cope with, whether that’s day-to-day disruption or grand

Useful resources

reorganisation. To remove barriers to autistic people, employers can keep things the same for that person where practical (for example, parking space allocations and working hours). They can also give notice of unavoidable changes.


Job insecurity

Recent years have seen cuts to many services that support autistic adults – including some for finding and keeping work. Work can also be less secure, for example with zero-hours contracts. To remove barriers, Government and employers need to expand services, meeting needs and creating jobs. They can keep jobs in the public sector where they are more secure and not push autistic people into unsuitable work, and provide adequate benefits. What can we do as autistic individuals and family members? A few employers are trying to change their practices; perhaps more will. To make change happen, we can campaign and lobby governments and political parties. We can also assert our rights as individual workers and job-hunters, and organise with others to demand more autismfriendly workplaces. One way to do this is to join a trade union. It can help with your personal situation and provide a powerful collective voice. You can join a union whether or not there is one in your workplace already, or even if you don’t have a job. Most trade unions have structures for disabled members and/or train their representatives about autism. To misquote Karl Marx, ‘Thus far, autistic people have had to navigate, suffer or avoid the workplace. The point, however, is to change it.’ ●

• Read more advice on this topic in Janine’s book, Autism equality in the workplace (Jessica Kingsley Publishers) • Join our Too Much Information campaign calling on employers and Government to make changes to help more autistic people find and keep work.

LEGAL RIGHTS AT WORK Is autism a disability? Legally, a person is disabled if s/he has ‘a physical or mental impairment which has a substantial and long-term adverse effect on his/ her ability to carry out normal day-to-day activities’. Most autistic people will ‘qualify’. Discrimination Direct and indirect discrimination is unlawful, as is that arising from disability. Positive action It is lawful to take positive measures to assist disabled people. Reasonable adjustment Employers must adjust working conditions (if reasonable) to remove disadvantage to a disabled worker. Disclosure You are not obliged to tell your employer that you are autistic. However, many legal rights are only accessible if you do. Bullying Workplace bullying is not explicitly unlawful. However, other laws can be invoked against bullying. Harassment Unlawful harassment is ‘unwanted conduct related to a protected characteristic [eg disability] with the purpose or effect of violating the target’s dignity or creating an intimidating, hostile, degrading, humiliating or offensive environment for the victim’. Trade union rights Workers have the right to join a trade union, and to be accompanied by a union representative to some meetings with their employer. Take legal advice, for example from your trade union, if you think you have been treated unlawfully.




My story

Sophia Grech Sophia Grech is an internationally acclaimed opera singer with Asperger syndrome who performs as a soloist all over the world. But it wasn’t an easy journey to get to where she is now. She told us her story.


think my childhood was probably very typical for someone with AS. I went to school in the 70s and 80s and hated it. I hardly spoke and never listened to anything in lessons. I couldn’t follow what was going on in the classroom – I could hardly read or write. I was constantly being smacked by teachers for drawing pictures in my exercise books instead of writing. School was one big confusing situation – I didn’t understand anything at all! I didn’t really have any friends, and experienced bullying from virtually Sophia has sung for royalty

my first day at school. The bullying was brutal both mentally and physically. Every day felt like a desperate hell and I just wanted to die. When I was 13, my family moved to Weymouth. I joined a new school and they said I was four years behind the rest of my class. I begged them to let me take O-Level scripture early like my classmates. They said I’d fail, but I thought that if I could learn the whole bible from memory, how could I fail? So that’s what I did – down to every full stop, and got an A grade in the exam. My time at that school was the only time in my childhood that I was happy, because the school only had about 25 girls in a year. The other girls were very kind to me but I didn’t really enjoy having friends and didn’t socialise outside of school. LEARNING TO SING In Weymouth, I started to sing. My parents were delighted that I wanted to sing, and paid for lessons. In my first lesson the teacher asked, “How long have you been able to sing like this?” He said I had a big talent, and contacted the Royal College of Music in London to ask if they would see me when I was about 14. They said I was too young, but after a bit of persuasion from him they agreed and gave me a consultation lesson from the head of singing. After 30 minutes she asked, “Would you like to be an opera



singer?” I thought, “What the heck? Opera? What’s that?” but replied “Oh yes, I would love that.” She wanted to start teaching me, and gave me lessons every fortnight at the RCM. OVERCOMING ADVERSITY I wanted to go to the RCM full time, but you need to be really good at reading music to pass the entrance exam. My previous schools had said I was musically untalented so had denied me music theory lessons, so I had my work cut out. I became totally fixated and obsessed with learning to read music and classical musicianship. I told my parents I needed to make music second nature, like eating dinner. The work paid off – I took grade five theory and got 100% in the exam, and when I took a grade eight singing exam, I got a distinction. But at sixth form college, my life fell apart. College felt huge, I was back in the normal world with lots and lots of people. It was agonizing. I spoke to no one, and sometimes could barely face going. I just wanted to disappear, and began to starve myself. I spent all my time alone. I was known as the “weirdo” or “Pavarotti” after some kids worked out that I loved to sing. All I wanted to do was hide in my bedroom and study music. I couldn’t cope, and ended up leaving to join the Youth Training Scheme which was


“Being diagnosed with AS was a turning point for me. My life somehow fell into place and I can now understand why my life has been the way it is.”

From a quiet, nervous person to a confident opera singer




Sophia has performed all over the world

equally terrifying, and I got sacked from two of my work placements. Following this period, I was preparing for auditions at top music colleges. But my singing teacher thought there was something “not right” about me. She told me my singing was amazing, but that I was “not bright enough” to cope at a music college. I was so depressed that I stayed in bed for two days. I thought my life was over. Going to the Royal College was all I had wanted since I started to sing. Then my sister came into my room, said, “Sod your teacher” and told me to audition. My pain lifted – I thought, “Hell yeah, I’m going to audition.” So I did. I ended up getting scholarships to all the four top music colleges. My singing teacher was head of the audition board for the RCM – but she said she was proud of me and they gave me a place, which I accepted. I began my studies in 1990. I used coping strategies, like not talking to anyone, to get through the days. A professor once asked me in front of the class if English was my first language because my essay was “unreadable”. It was humiliating, but not unusual for me – my entire childhood had been one big humiliating experience. But during my time at the RCM, I became a top student. I received the highest



“I was known as the ‘weirdo’ or ‘Pavarotti’ after some kids worked out that I loved to sing.” exam results in my year for four years running and won numerous prizes and awards. In 1995 I graduated with an honours degree in music. As for my AS, I went from a quiet, nervous, person to a confident woman who wears make-up and can hold a conversation with a stranger. I’ve sung for royalty, I’ve dined with ambassadors and even the President of Malta has invited me to dinner, and to give a concert for him at his Palace. I now give master classes at universities all across the world and have to speak to hundreds of people. I get invited back so I can’t be doing too badly! I can’t say it’s been easy. It’s been the opposite – so terribly difficult sometimes. I’ve struggled with

Share your story

anxiety during my career because I have to travel all over the world. I’ve nearly broken down at points. Mostly though, I like the lonely life of a soloist. GETTING A DIAGNOSIS Being diagnosed with AS last year was a turning point for me. My life somehow fell into place and I can understand now why my life has been the way it is. If it hadn’t been for my singing I really do believe I would have still been that unconfident person. I look back over the last 25 years and wonder how the heck I managed to have such a big career. My determination to succeed simply outweighed my daily frustrations. ●

• Would you like to share your story about any aspect of living or working with autism? Please email 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.



reality check Craig Smith is a specialist teacher and educational researcher in Australia. He’s been making headlines with his pioneering use of augmented reality gaming app, Pokémon Go – which took the world by storm over the summer – in his teaching methods. We asked him why he thinks it’s so special.

How did Pokémon Go come into your classroom? As a teacher, I’m always really interested in how we can use special interests to help students reach goals, both with us and their families. I was at an education conference when Pokémon Go launched and, walking along the road outside, everyone was playing it, laughing and talking together. It was like a new year’s celebration all around this game. That’s when my colleagues and I wondered if we could draw out some educational links from the game. I went home and put together a holiday programme for families and their children. In the game, a lot of the focus is on Pokéstops (landmarks and historical signs). So I thought it would be a good way for kids to research local civic history. I used Gardner’s multiple

intelligences to create learning activities linked to ways in which different students process things. I tried to include a broad spectrum of activities. At this point, it wasn’t explicitly directed at autistic children. But a couple of days after I put it out, I started getting contacted by families and autistic children who were finding it was an extraordinary tool for leaving the house and going for a walk. What is it about the game that particularly helps autistic students? Although other games, such as Minecraft, have been great for engaging autistic students, I’ve never come across a game which has been so motivating to get them outside. One mum told me that since Pokémon Go came out, she and her family had been going out for 5km walks every day. This all happened

around the same time as children were going back to school which meant we could also talk to families about how to use the game to reach social goals, to make contact with friends and neighbours, for example. As well as researching local history, we found various ways of linking the game to academic goals. One example is using geometric concepts by making and using maps with the app. Students make their own maps of the places they are walking using another route-logger app. We can look at the map together once we’re back in the classroom. Another example is using the game to build social skills in team work, for example by going orienteering in small groups. The kids have to agree among themselves on the best places to go – practising their expressive language and conversation.

“I spoke to a young person in the park the other day who said with Pokémon Go, he now feels he can go up to people and start talking to them. When you see that happen on a natural level, you think there’s something special.” Craig with one of his students, playing Pokémon Go




Pokémon is encouraging pupils out into the playground

Starting with role playing in the classroom, we build up to going into other classrooms, then into the playground and the outside world. It’s about breaking down those skills for them to practise. Another way in which augmented reality adventure games like Pokémon Go are well-suited to many autistic children is that it’s not a matter of winning and losing. You just keep walking around and finding things, and there is no time pressure. Many of our students find competition very challenging and anxiety-provoking. Because you can choose to make it competitive, or relaxing and mindful, as the gamer you are much more in control than with many other games, which suits many of our students. What are the health benefits? I think the game is producing both physical and mental health benefits. One autistic adult told me he found playing the game to be a very mindful experience. He puts on his music, starts Pokémon Go and goes for a walk. For him it’s very relaxing and helps him exist in the present moment. He has the option of engaging with others if he likes, or he can follow the goals in the game, or not. Another autistic adult I know uses a game in which there are virtual zombies chasing him to help him



jog faster on the treadmill! Another interesting example of how games can be used to encourage exercise and good health for people (autistic or otherwise) who find it hard to engage in physical activity. What about the risks? There was some negative press in the first week – with people walking into traffic, and going onto private property for example. We certainly wouldn’t want our kids wondering around the streets at risk, but with the right support and a focus on the right goals, I think the game can be something very positive. Teachers and parents can use tools like this to work with children on the skills they need to navigate the world. You can integrate Pokémon Go into learning life skills, such as how to cross the road safely, safety around talking to strangers, developing a circle of friends and building trust and understanding social rules. The great thing with an approach like this is that you’re not teaching these things in a negative, fear-based way – but rather to learn about safety and awareness and have fun with it at the same time. Do you think the skills being learned will last after interest in the game diminishes? With other things like this, we’ve

Craig thinks the game has physical and mental health benefits

found that once most students have experienced the benefits of the new things they’ve been doing, they wouldn’t regress if that tool is then no longer of interest. For example, Minecraft got lots of our students who were not interested in creating things before into using Lego to build constructions in an imaginative way. It was as if they had developed a sense of freedom, that they could do anything and that it was okay to make mistakes. We found that many of the students who had an intense interest in Minecraft which faded away went on to other things like architecture, mapping and Lego. The game helped them spread out into other motivations, skills and interests. With Pokémon Go, I can see a lot of our students already developing


new interests like bird watching, photography, and even the fun of socialising and taking selfies with friends and Pokémon! I like to think that if the game suddenly disappeared, the kids will have had a taste of new, natural experiences that will last beyond their interest in the game. How can new technologies support autistic students at school? When iPads came into the classroom, it was a huge leap forward as it meant we could explain concepts in visually engaging ways so much more easily to the kids. We know that visual tools in teaching are extremely powerful but it’s tricky to use visuals in a really live and fast-paced kind of way. But suddenly with an iPad, someone could come to us with an interest and within a few minutes we could have some great resources to work with. Developments in gaming technology can offer great bridges for acquiring social goals in real life. Minecraft was a huge thing for us. It helped develop problem-solving within this virtual world, which was then transferable. But Pokémon Go goes further. There is the physical and mental health factor of walking and getting out and about – which is something our students struggle with. I think we need to think of ways we can use that augmented reality technology in new ways which are autism-friendly but also good for everyone. I heard about a teacher in America who built a school tour for new students, with points along the way where you hold up the iPad to make the sign turn into a character who tells you about that part of the school – I think that kind of stuff is brilliant.

“There hasn’t really been a game like this before – you can’t cheat the fact that you need to walk another 3km to get to the next goal!” How can we get more teachers on board? The idea of thinking in pictures is true for many, many learners. In my educational outreach work – going into schools in the area to share bestpractice for supporting their autistic children – some teachers tune out if most of their students aren’t autistic. I suppose it sounds like a lot of effort to change the way they teach for a small minority of students. But the way I get through to them is to explain that it is actually just good teaching practice for all students – transmitting thoughts and concepts effectively. What’s the biggest misconception about autism among the general public in Australia? From my standpoint in education, the biggest challenge we find is for children who are deemed ‘highfunctioning’, as teachers can find it hard to recognise that they have a range of very significant needs which are critical to their ability to function. I find that it is these students who find mainstream education the hardest, because of all the subtle social anxieties that are not necessarily easy for a classroom teacher to recognise.

anything with autism in the title seems to attract attention, perhaps due to the way it’s presented as the next “magical cure”. But the other side is that people start to ask why there is this link, which opens up the opportunity to talk about the difficulties and experience of autism with people who wouldn’t otherwise be interested. For lots of the families of our students, one of their biggest challenges is that they say people look at my child and don’t believe they are autistic, especially if they go to a mainstream school. But if only people knew the challenges they have – which can be incredibly disabling, even if they don’t “look” disabled. So anything which says ‘let me show you’ and explains how the tools work is potentially very powerful in expanding people’s understanding of autism. ●

Do you think the game will help to educate the public about autism? It’s a bit of a double-edged sword sometimes. Pokémon Go and autism have already been linked together quite a bit in the media. Somehow,

Find out more • What do you think about using gaming to support autism-specific education? Email us at to share your views. • We created a virtual reality film to show people what sensory overload might feel like. If you didn’t catch the experience on our UK tour earlier this year, you can still try it at home with a set of cardboard goggles and your smartphone. Order yours at

Discovering Pokémon in the chicken coop



As a parent, Esther’s advice is never to give up



power Esther Fletcher is a parent and a founding member of our Cheshire West and Chester Branch. She has just been awarded an MBE for her contribution to education over the past 25 years. BY ELEANOR WHEELER

Why did you first decide to found a local branch? An inspirational parent called Kay Taylor moved to Cheshire over 25 years ago and was concerned about the lack of support for families caring for someone with autism. She formed a small support group and I was one of the parents who was at that first meeting. Very few children or adults had an ASD diagnosis in those days. We became one of the first National Autistic Society branches. Eileen Hopkins, who worked for the charity, helped us decide what our priorities should be. We decided that we needed to concentrate on care for adults, because one day we wouldn’t be here to provide such care. Kay always stressed it was about changing the landscape so that parents didn’t have to keep fighting the same battles again and again. What has been your motivation to remain involved with the branch for so long? There always seems to be a new challenge! When I feel like giving up, someone picks me up and points out there is too much to lose. One of the things I would really like to stress is how hard everyone in our branch has worked to make change happen. Different people have different strengths and we need to

acknowledge this. It is never about one person, it is about working together. Also, without the willingness of the local authority to invite us to meetings and listen to our views, there would have been no change. We have been lucky that so many have shared our vision for change. I have worked with The National Autistic Society’s policy and campaigns team at a national level and that has been a privilege. To be part of such a different group has been inspiring and exciting. Thanks in part to you, two primary schools in your area have received National Autistic Society accreditation. Is that your proudest achievement? While that achievement is fantastic, I think our biggest success was getting an adult provision, called Dover Drive, into place. It was a long journey and we worked very closely with Cheshire to achieve our goal. One of our parents, Marion Redfern, was a star and stayed

with the project to ensure our dream became a reality. The work of our volunteers has been amazing and so much has been achieved, but it has been hard work and there have been no quick fixes. The charity’s regional team have always been supportive in what we have set out to achieve. You do need that wider perspective. When did you find out about the MBE and how did you feel? A letter arrived in the post and when I read it, I was almost in tears. I was really shocked and quite overwhelmed. I had at that time no idea who had made the nomination. You can’t tell anyone until the official notification is published. You have to return a letter accepting and then wonder if it arrived safely. When will you receive it and are you excited? I have a date in November. It is exciting and daunting at the same time.

“One of the things I would really like to stress is how hard everyone in our branch has worked to make change happen.” YOUR AUTISM MAGAZINE


Esther’s daughter Sarah out rowing with Grosvenor Rowing Club in Chester


Could you tell us a bit about your daughter, Sarah? Sarah is 33. She was diagnosed with autism at the age of two by Professor Ina van Berckelaar. We were very lucky to receive such an early diagnosis. Sarah was educated at Englishspeaking schools in The Hague and Brussels. On our return to the UK, she attended Dee Banks School in Chester before transferring to Ysgol Plas Brondyffrn in Denbigh for the final nine years of her formal education. She then completed an equine course at Northop College, which she loved. Sarah was able to access mainstream brownies and guides and even enjoyed time away at camp with them. She took part in ballet and tap classes when she was younger. Her picture board for her eighteenth birthday reflects the busy life she has led so far. We’ve travelled extensively, including making two trips to Florida and another to Texas, where she was born. We also enjoyed a family holiday back to Holland. Since leaving school, Sarah has lived in supported living and accessed a range of activities, including bread making, computer skills, rowing and a sports group. She has established links in the community at places like the library, hairdressers and chiropodist. Sarah’s dad takes her to the gym each week, which she really looks forward to. I spend time volunteering at a sports club that she attends and often accompany her to rowing sessions. When spending an extended period with us, we’ve learned that we have to be highly organised and expect to be busy with not a moment to spare.

In your experience of talking to other parents, what are the hardest things about being parents to a child on the autism spectrum? The daily challenges that life continues to throw at us!

who is the parent of a disabled child, but the others I walk with also have difficult times and sharing helps. I also volunteer at a local hospice, which helps to provide a reality check.

What’s the worst thing people misunderstand about autism, in your view? Often people do not recognise the daily struggle that children and adults with autism experience. Too often they have developed coping skills, especially in familiar situations, which can easily unravel when they are presented with the unexpected. The resulting behaviours can be difficult for everyone to manage.

What would you say to parents who perhaps feel like their voices aren’t being listened to? Parents should never underestimate the power they have if they work together with the local authority. Time and time again, parents have been able to influence change locally as a result of forums being created where they can voice their opinions. It is always about working with and not against the local authority. The special schools survived because parents took the opportunity to explain why some children needed this option.

What are the best things about being part of a community of parents living with autism? That you don’t have to explain. How do you relax, and take time to look after yourselves? I have a group of friends with whom I walk twice a week, always first thing in the morning. We have supported each other for over 25 years with the challenges that have been thrown at us. I am the only one

“Parents should never underestimate the power they have if they work together with the local authority.” 26 W I N T E R


What are your top tips for working together with local authorities to instigate change? Take every opportunity to give your views when the opportunity arises. Don’t assume someone else will respond. Remember every view is valid and all our children are different; there is no one size fits all. Try to be constructive. Know who the decision makers are and don’t assume that they know what the issues are. Invite them to events where they can learn more about autism in a nonthreatening environment. Finally, never give up! ●


It’s not the end

of the


But what if it was? We caught up with author of science fiction and fantasy for teenagers, Corinne Duyvis, about her latest novel On the Edge of Gone, which has an autistic teenager as its heroine. BY SOPHIE CLARKE

In On the Edge of Gone, autistic teenager Denise has to deal with the end of the world as she knows it – and try to get a place on a generation ship to escape. The problem is, to get on board you need a practical skill. Denise is autistic and fears that her life and skills won’t be valued highly enough. The novel explores ideas around disability and social value, challenging stereotypes and asking tricky questions.



What was the experience of writing On the Edge of Gone like for you? The idea for the book popped into my head, and within a month, I was starting to write it. The story came together pretty smoothly. I wrote the first two thirds in a short space of time, but the final third took another six months or so to finish. The character of Denise was pretty fully formed from the start. Several aspects of her character did change and develop as my ideas progressed, but the ‘feel’ of who she is was there from the start. It has been great to know people have been connecting with her as a fully formed character. How close is Denise’s experience of being autistic to yours? A lot of the details are different, but many of her personal experiences of autism – how she feels about it and how she deals with it – were based closely on my own experiences, both as a teenager and an adult. A lot of her insecurities are similar to my own. Her experience was not something I had often seen portrayed in books, so it was important to me to explore those conflicts in the story.

Were any of the early readers of the draft book surprised by your choice to portray an autistic, female main character? Many people still think it’s a male condition… People certainly found the idea different and interesting. I don’t know if that was particularly because Denise is a girl – they are used to me, so they know that autism is not just a male thing. I’ve had some good responses to that aspect of the character. Although there are autistic characters in fiction, they tend overwhelmingly to be boys – and white boys in particular. That’s a very narrow idea. Denise breaks away from that in multiple ways, which was important to me. I wanted to try and reflect the actual diversity of autism. Not only do more people have it than you tend to see in the media, but they also experience it in different ways.

“I wanted to explore how disabled characters are treated in apocalyptic fiction. Often, they are ignored, or there is an assumption that ‘Oh well, they didn’t make it’.”

Did you feel pressure to avoid autism stereotypes? I didn’t feel it as pressure, but I did have an awareness of the dangers of reinforcing autistic stereotypes. There are a lot of depictions of autistic people out there that are either inaccurate or incomplete. It’s important to me to challenge them, because it affects real people when they are not represented accurately. Even as an autistic person, fictional characters or portrayals in the media that are inaccurate get into your head. And even if you know they are wrong, you can internalise the representations. So every time I wrote about a certain trait, I would take a step back, and ask myself whether I was writing this for the right reasons. I was careful to not unthinkingly replicate ‘autistic’ traits that were based on assumptions instead of real experiences.

Are there fictional depictions of autistic people which you find particularly problematic? One of the things which bothers me about many portrayals of autistic people is that characters don’t get to exist as complete characters. They are always props, there for a purpose. They are there to provide an obstacle to a protagonist, or they are there to make that protagonist look good. Or, they are an object of fascination for the reader and don’t get to have agency, to be complex or threedimensional. They end up feeling quite limited. What motivated you to have such a rich and deep exploration of the characters in On the Edge of Gone? I wanted to explore how disabled characters are treated in apocalyptic and post-apocalyptic fiction. Often,

they are ignored – or there is an implicit or explicit assumption that they didn’t make it, or shouldn’t make it because they are not strong or useful enough. That idea isn’t challenged very often, so exploring that was something I strongly wanted to do with the book. If you’re going to challenge that idea of who gets to survive, or who should survive, you need to do it with a specific character. Talking about ‘the disabled’ as a group feels very nameless and faceless. Fiction becomes much more relevant if you get to see how individuals deal with a situation. I wanted to go deep into Denise’s character and explore her relationships, experiences, and developments to show how these circumstances might affect someone who is just trying her best and simply wants to live her life.




What are the biggest changes you’d like to see in representations of autism in fiction? I think a big part of it would be putting autistic people at the centre of things – both on the page and behind the scenes. A lot of the time, autistic characters are written by neurotypical authors. They are represented by neurotypical agents. The book is edited, copy-edited, publicised and sold by neurotypical people. Autistic people are therefore excluded from every stage of the process, which is really skewed. Sometimes, you get the sense that the people producing a book haven’t considered how autistic readers themselves will respond to the book. It is assumed that they won’t be the ones reading it. For example, you watch or read interviews with authors who talk about the responses they’ve had from siblings or parents of autistic people – as if they are the main audience, and not autistic people themselves. Then it feels like the book is about me, but not for me, that I’m not involved. That’s a really weird, alienating feeling. In terms of the stories themselves, quite often it can feel like the reader is meant to relate to the neurotypical characters, rather than with the autistic character. The autistic character may also be portrayed as being without empathy – which is a huge and damaging misconception. What advice would you give to somebody not autistic themselves, who wanted to include an autistic character in their novel? Develop your idea first, then do your research, then talk to autistic people about how you are thinking about

“I feel like as autistic people, we have to justify our existence in life a lot.” portraying the character. Doing it in that order will mean you have more specific and practical questions to ask. Consulting with autistic people is essential, but it doesn’t replace the personal responsibility of research. It’s important to pay attention to your sources, too: you want to hear first-hand from autistic people as much as possible. Do you think Denise is a good role model? I didn’t write her that way – she’s a 16-year-old girl with her own flaws and very individual opinions and experiences. But I do think readers can learn from her. Without giving too much away, at the end of the novel, Denise makes some decisions which are very important to me personally, and are also relevant to the wider conversation about how disability is treated in society. If I had been reading about and grappling with those issues as a teenager, I think it would have meant a lot to me. There is a lot of non-acceptance in the book. Does this reflect the experiences of autistic people in real life? Unfortunately, yes. I often feel like,

Find out more • Read about Corinne’s top apocalyptic reads and favourite autistic characters in fiction on Your Autism Extra. Log in at • On the Edge of Gone by Corinne Duyvis, published by Abrams, is available to Your Autism Magazine readers at the special rate of £7.99 (RRP £10.99)*. To order please call 01903 828503 and quote reference 50535. • Corinne’s next novel, Guardians of the Galaxy: Collect Them All, will be out in April 2017. *Free postage and packaging in the UK (international postage and packaging charges will apply).



as autistic people, we have to justify our existence to others. People who are unable to work are considered to be a burden on society. They are vulnerable to being stripped of income, benefits and social support. There is so much pressure to be a productive member of society. So, disabled people are often shoved away because it’s more comfortable for non-autistic people. That attitude exists in large and small ways all over the place which is really depressing and something which disabled activists are working hard to change. In your perfect society, what would qualify people to get onto the last ship leaving Earth? That’s the thing – there are no easy answers! You can focus on productivity, and what is going to be the most efficient generation ship in the long run. Or, you could focus on who is going to reproduce the most so that society can be rebuilt faster. Or you could focus on who has done the most good in their life. Or on who is most vulnerable, and couldn’t survive otherwise. All of these could be “justified” in one way or another. But what I’m saying with the book is that if you have to choose who lives and who dies, then no matter what, all of those choices are going to be terrible and unfair. They are all going to lead to certain people dying. The idea that there’s a “logical” choice is often used to justify excluding people like me and Denise. I think if the book makes readers consider that it’s never a straightforward decision, I’ve done my job. ●


How to respond to self-injurious behaviour

Self-injurious behaviour might be a result of the person being unable to express what they need

Self-injurious behaviour can be extremely distressing to all involved. Our Specialist Behaviour Advisers explain some of the possible causes and how best to respond. B Y O U R S P E C I A L I S T B E H AV I O U R A D V I S E R S


NOWING HOW TO intervene is dependent on understanding why the self-injurious behaviour is happening and working out personalised strategies from there. Changing the behaviour relies on everybody who supports the person – including teachers and family members – responding consistently. Discover any health issues If the behaviour has come on suddenly or become more intense, the first thing to rule out is whether the person has any medical or dental issues. Being in pain as a result of toothache, for example, could result in the person engaging in unusual behaviour. Consider the bigger picture Create a diary to log what happens just before the behaviour occurs, what the behaviour is and how everyone reacts to it. This will help you to see if there are any patterns and spot possible triggers.

“Self-injurious behaviour can occur for a variety of reasons including difficulties with communicating, sensory differences and emotional distress.” Consider sensory differences Some autistic people are hypersensitive. For them, self-injury may be an expression of pain. For instance, banging on their face if they are overwhelmed by light or noise. However, some autistic people are hyposensitive to touch so their behaviour – such as pinching themselves or picking at their skin – may be sensory-seeking. Think about communication Self-injurious behaviour might be a result of the person being unable to express what they need and venting their frustration physically through self-injury. It’s vital to develop strong

communication systems with the person so they are better able to tell you if they need something or that something is wrong. Respond carefully An autistic person might engage in selfinjurious behaviour because they know that they are likely to receive a quick, strong response. This may not be the original reason for the behaviour, but has developed into a routine. If you think this is the case, consider your reactions. While it is obviously important to keep the person safe, you can also reduce reinforcement of the behaviour by keeping a calm, low voice and limiting attention. If you




Keep a diary to log what happens before the behaviour occurs

Make situations less dangerous by putting a pillow against a wall if the person is banging their head against it do have to intervene, take steps to make the situation less dangerous, like putting a pillow against the wall if the person is banging their head against it. Reinforce appropriate behaviour Try to build towards being responsive to the person’s appropriate behaviour. Set up a reward system that motivates them using a particular toy or food that they like. Often, having a box of different things, and getting the person to choose something, can be a good approach. If it’s a toy or activity, set a timer so they know how long they have. Instant rewards can work better than ones which require building up to the reward through achieving points, stickers or stamps. Emotional awareness and relaxation Help the person to learn to recognise and respond appropriately to

overwhelming emotions, and find alternative strategies to deal with their feelings. For example, stress balls, pillows, punch bags, sensory activities or exercises. It’s important to regularly run through how to use such strategies when the emotions appear; Social StoriesTM can be a useful tool to help. It’s also vital to learn to recognise the signs that the person is likely to self-harm so that you can direct them to a more appropriate activity. A note on medication We advise using medication as a last resort for managing certain behaviours. But if it is really extreme and the family is really struggling, medication can be considered and discussed with an appropriate medical professional. Always seek advice from a clinical psychologist or psychiatrist with experience of autism. ●

“While medication should be viewed as a last resort, in extreme cases it can be useful as you and supporting professionals are discovering and addressing the causes of behaviour.”



Find out more • Read a guide to self-injurious behaviour at www.autism. • For advice on behaviour, see what our Specialist Behaviour Advice Service can do to help at services/helplines/main/ specialist. • Search for medical professionals near you on our Autism Services Directory at http://www. directory. • If you are concerned that someone is self-harming, contact Samaritans on 116 123 (open 24 hours a day).


Tackling depression using cognitive behavioural therapy

Physical exercise is increasingly recognised as an antidepressant

In my work, I have come across many people who have become depressed due to emotional fatigue from anxiety. But all forms of depression are treatable. This article outlines how cognitive behavioural therapy (CBT) can be an effective treatment. B Y T O N Y AT T W O O D


HO ARE YOU?”, I asked Henry, the very glum looking 14-year-old boy in front of me at the Minds and Hearts clinic, where we specialise in autism spectrum conditions. He looked at me blankly and some moments ticked by. Remembering his avid interest in cars, I rephrased my question. “If you were a car, how would you describe yourself?” Henry thought for a moment. “I am in good working condition,” he said. “There is nothing wrong with my engine, I have lots of fuel in my tank, the engine is running, but I am stuck in park, not in neutral, and I cannot seem to go. I receive a lot of care, people keep putting fuel in and I get serviced often, but it doesn’t seem to make any difference. I can’t go.” Henry was in the middle of a major depressive episode and his car metaphor was an inspired description of his depression. He felt that he should be able to function; he should

be able to get better with all the care and attention he had received. But the fact was, he couldn’t. And the more he couldn’t, the worse he became. Whether someone is experiencing overwhelming feelings of sadness, a major depressive episode, dysthymia or bipolar II disorder, there will be significant disruption to both their life and the lives of those who love them. However, it’s important to understand that depression in all its forms can be treated successfully. Initially, the main component of treatment is recognition and the measurement of the symptoms. That will determine what approach to take.

Cognitive behavioural therapy CBT is currently the psychological treatment of choice for people who are suffering from depression (see www. CBT is an ‘umbrella’ term for a range of psychological therapies designed to treat depression, anxiety, anger and stress. There are also variations of CBT to treat relationship problems, schizophrenia, addictions, and eating and personality disorders. Each of these psychological therapies has some common underlying ideas, including: • it is our perception or thoughts about events, people and situations that determine our reactions or feelings towards them • the consequences of our behaviours

“A common limiting belief for a person with Asperger syndrome is that they cannot change their behaviour, experiences or circumstances.” YOUR AUTISM MAGAZINE



will determine how frequently and for how long we engage in those behaviours • our thoughts and our behaviours can be measured and monitored, and change over time. The four stages of CBT When starting CBT, the first stage is an assessment of the nature and degree of problems associated with a specific emotion, such as depression, using self-report scales and selfmonitoring. Assessment provides you with an understanding of the causes of the problem and, to some extent, why the problem is still continuing and so deep. Initial assessment also provides a baseline with which you can evaluate the treatment programme. The next stage is affective (or emotion) education to increase your knowledge of emotions within yourself and others. This means examining the connection between your thoughts, emotions and behaviour, and identifying the ways in which you conceptualise emotions and perceive various situations. The principle is that the more you identify and understand emotions, the more you are able to express and manage those emotions appropriately. The third stage of CBT involves both cognitive restructuring to correct distorted conceptualisations and dysfunctional beliefs, and behavioural change to help you to constructively manage emotions using a range of emotional management ‘tools’. Activity planning and self-monitoring are an important part of this stage, and of the fourth, or last, stage. Within the third stage of CBT (cognitive restructuring), the components identified by research to be effective are as follows: • understanding and expressing one’s own emotions • identification of one’s own thoughts and beliefs • understanding and correcting



distorted perceptions and dysfunctional beliefs • increasing physical exercise • learning how to relax • increasing pleasurable activities • use of social support. The fourth and last stage of CBT is continuing practice of the new cognitive and behavioural skills in real life situations. The key components of CBT Understanding and expression of one’s own emotions A key component of CBT is understanding the difference between a feeling and a thought, being able to identify both within ourselves, and also being able to express our feelings accurately and effectively. This will help with learning to regulate emotions effectively. Use of structure and visuals Research and clinical experience suggest that a person with Asperger syndrome is happier and more relaxed when there is structure and routine to their day. They are also more likely to implement therapy activities when they are scheduled into daily life. Self-monitoring Behaviour and thinking changes can occur simply by starting to monitor behaviour and thoughts, without any other intervention. Keeping an accurate record of what happened, rather than relying on retrospective perception of thoughts, feelings and emotions, is vital. Physical exercise Several research studies on the management of depression show that physical exercise significantly reduces symptoms of depression and it is increasingly recognised as an antidepressant. Exercise can be anything that gets your heart rate up – so don’t be put off by not having enjoyed traditional sports in the past.

Positive, supportive relationships have a beneficial effect on both general and psychological health There is something out there for everyone. Pleasurable activities Successful CBT involves discovering or re-discovering pleasurable activities, and increasing participation in these activities. It is important to record what these are during a period of relative happiness, as when feeling very low spirited or depressed, it can be difficult to remember or generate examples of your pleasant experiences. Cognitive restructuring This is a central part of CBT which allows the person to hold their own thoughts and beliefs as hypotheses about how things are, and then seek data or clear evidence to affirm or disprove their assumptions. In this way, you do not have to believe your first thought, for example,

Successful CBT involves discovering or rediscovering pleasurable activities, and increasing participation in these

“I am a failure”, or “Things will always be this bad”. Instead, you can carefully examine the actual evidence, as any good scientist or detective would do, to confirm or disprove your opinion. This can be used to work towards behavioural change. Use of social support Positive, supportive relationships

with family members, friends and colleagues have a beneficial effect on both general and psychological health. Even if they have had bad experiences in the past, a person with Asperger syndrome has a psychological need for acceptance and approval from others, just like anyone else. The number of social support people may be smaller. The individuals may be carefully chosen

because of their attitude towards and intuitive understanding of autism. Relaxation activities Many people with Asperger syndrome do not recognise that they are in a constant state of high anxiety and stress which is mentally exhausting, and do not know how to achieve relaxation. Learning to relax is therefore a vital part of any CBT programme. ●

Useful websites and resources • The complete CBT programme this advice is taken from, Exploring depression and beating the blues: a CBT self-help guide to understanding and coping with depression in Asperger’s syndrome [ASD-Level 1] by Tony Attwood and Michelle Garnett is available now from all good book shops. We have three copies to give away. To enter the prize draw, email, telling us your name and why you became a member by 8 December. • Tony Attwood is leading a masterclass on adapting the autism diagnostic process for woman and girls on 11 January 2017 in London. Find out more at • Find information about autism and mental health at mental-health.



Spotlight on autism training for parents

“If you want to know about autism – read a book. If you want to know about your autistic child go on an EarlyBird programme.” — Parent

How can our charity help you? EarlyBird Director Jo Stevens has worked with families and autistic children for more than 30 years. She explains what our training programmes can do to help parents understand their autistic child better.


hat is EarlyBird and EarlyBird Plus, and who are they for? The EarlyBird programme is a three-month parenting programme for families with a pre-school child on the autism spectrum. EarlyBird Plus is a similar programme but for families with a child who did not receive their diagnosis under the age of five. They are run by local authority staff who are trained and licensed to run the programme with local families on behalf of The National Autistic Society. Why are the programmes so necessary? Families tell us that after receiving a diagnosis they often feel confused, isolated, anxious about the future, not knowing which way to turn. Both programmes allow professionals and families to work together to learn more about autism and how best to help their children. The programme consists of weekly group sessions and a number of individual home

How do people access it? EarlyBird programmes all work on a parent referral basis which means families don’t have to wait for a referral from a professional. Families contact their local team, attend an information meeting to find out more about what the programme entails and then apply for a place.

How does it improve lives? Families tell us that after attending EarlyBird they can understand their child’s autism better. That is, the different way in which he or she thinks, learns and experiences the world. They tell us they can enjoy life more as a family doing typical activities such as day trips and holidays – and that they have more success in doing everyday activities like swimming or shopping. They also say they can explain autism better to others.

“EarlyBird is like being given a pair of 3D glasses; you are watching the same movie but you can see so much more!” — Parent

What’s the best part of the job as Director? I love to work with local families, see them grow in confidence and develop a good understanding of autism and how best they can help their child fulfil his or her potential. Training local professionals to run EarlyBird parent programmes with families across the UK and overseas makes me feel that I have a positive impact on the lives of thousands of families each year. I would love for all local authorities to invest in training staff to provide these highly effective parent support programmes.

visits over a three-month period. EarlyBird Plus also helps to build consistency across home and school.

Did you know?

To find out more about EarlyBird, EarlyBird Plus and EarlyBird Healthy Minds (a six-session parent support programme to help promote good mental health in autistic children), visit




Facilitating early social communication skills: from theory to practice AUTHOR: Pamela Rosenthal Rollins PUBLISHER: AAPC Publishing PRICE: Around £70 VERDICT: Great, adaptable examples if using a core vocabulary approach THIS BOOK FOCUSES on supporting the language of children on the autism spectrum in pre-school settings. It goes over some basics and the language used makes it easy to read. Detailed and specific lesson plans, with a different topic each week, show you how to embed language tasks into functional role play. Although the purpose-built curriculum and high adult-child ratio may not be feasible in UK pre-schools, the activities and principles are adaptable. It is great to have a book with real, tangible examples which can be used. It is important to note that the book uses a core vocabulary approach, with scripts using minimal language which, while appropriate for some children, may not be appropriate for all children with communication difficulties.

Reviewed by Rebecca Segal, Speech and Language Therapist

Giveaways To win one of two copies of Fitting in, by autistic author and illustrator Colin Thompson, email YourAutismMag@ with your name by 8 December quoting ‘Fitting in’. The winner will be announced in the next issue. The winner of last quarter’s competition to win a copy of Artistic Autistic Colouring Book is Anne from St. Helens. Christina from Blackburn has won the Something Special and Woolley and Tig goodies. Well done to both our winners!

Become a reviewer

Would you like to join our reviewer list for books and products? Email us at

Our six favourite… Christmas present ideas


A TICKET TO AN AUTISMFRIENDLY PANTO Whether it’s The Snowman and Peter and the Wolf, Jack and the Beanstalk or Peter Pan, seeing a relaxed performance of a festive show is a great way to spend time together as a family. See what’s on at




ROARY THE TMI DINOSAUR Roar to raise awareness of autism with Roary, the Too Much Information dinosaur! This cuddly dino is a great gift option for younger children and was named by Alexander (see My Story, summer 2016 issue). Buy him at


A SENSORY TOY Sensory toys can provide sensory feedback for autistic people of whatever age, and there is a huge variety to choose from. For example bubble machines or tubes, fibre optic plumes, trampolines, musical instruments or swings.


My son’s not rain man: one man, one autistic boy, a million adventures AUTHOR: John Williams PUBLISHER: Michael O’Mara PRICE: £7.99 VERDICT: If you read one book this year, make it this one

MY SON HAS autism and is the same age as the boy in this book. I haven’t enjoyed reading a book this much in a very long time, if ever! Some of the things in the story are similar to my life, including my marital breakup. It has made me realise that some fathers do play their part in parenting a special needs child, and it has helped me to see things from the fathers’ perspective. It is a truly heartfelt account. The ending is magical; I was laughing and crying simultaneously. I particularly enjoyed the part about the autism diagnosis – it is a very strange time and John Williams explains it well.

Uniquely human AUTHOR: Dr Barry M. Prizant with Tom Fields-Meyer PUBLISHER: Souvenir Press PRICE: Around £9 VERDICT: An essential treatise of autism acceptance

THE CENTRAL – AND vital – message of this essential book is that the best way to help an autistic person is not to change them but for everyone else to change – their attitudes, behaviours and the types of support they provide. Prizant points out that “autistic behaviour” such as spinning, hand flapping and other coping mechanisms is often seen as “aberrant” or “noncompliant” behaviour that needs to be eliminated. It’s not understood as something functional for the autistic person. Autism isn’t an illness, just a different way of being uniquely human. Reviewed by Stu Ferrol, Your Autism Magazine reader

Read more reviews on Your Autism Extra at

Reviewed by Gill Jagger, Your Autism Magazine reader


DUPLO, LEGO OR OTHER CONSTRUCTION TOYS Toys based on building blocks and construction are often very popular with people on the autism spectrum, and you can find kits available for a range of prices.


A BOOK TO EXPLAIN AUTISM TO THE WHOLE FAMILY My family is different is an activity book which you can work on with your autistic child and their siblings to build understanding of autism across the whole family. Buy it at


SPORTS LESSONS OR EXERCISE CLASSES If you know someone has an interest in a sport or wants to get fitter, why not offer to cover some lessons? It could be anything from rugby to trampolining. Just make sure you put their needs and preferences first.

Find more ideas at




Dan at work at Café Autisan

I’m a… Café Autisan worker Dan used to volunteer at Café Autisan in Lancashire. He’s now a paid member of staff. BY ALICE TODMAN


an is the first volunteer to be employed by Café Autisan. The café is a National Autistic Society social enterprise. It supports autistic people to develop work-based skills, prepare for employment and develop their confidence. Andrew Bowcock, one of the café’s support workers, says it was an easy decision to offer Dan the job. He says, “We could see he was very committed, enthusiastic, always on time and was very eager to learn.” Dan received his autism diagnosis at seven years old. He says school was a difficult experience for him. Although he had his own group of friends, he experienced some bullying from other students, as he attended focus classes for extra support in some subjects. He’s really developed his confidence since joining the café. Andrew says that Dan will now start conversations, rather than just responding. Dan also recommends things to do in the local area to customers. Andrew says, “Customers comment on how friendly and helpful he is!” Dan enjoys working both with members of the public and with his colleagues. He says, “I like working with other staff as when it’s quieter we have a good laugh.” The café staff gave him a birthday cake to celebrate his birthday, which he says he really appreciated and made him feel like part of the team.

The café has also given Dan opportunities to develop his skills. He says, “When I first arrived 12 months ago I didn’t know how to cook or prepare food and was a bit worried about using the equipment.” Now he prepares some meals and it’s one of his favourite parts of the job. He says, “It’s quite precise so it’s important the food reaches the customers looking as good as it can.” Dan finds some of the café’s autism-friendly adjustments very helpful, such as the pictures on the front of each fridge or freezer to show people what’s inside. He also finds the colourcoded till useful. The café has low arousal mood lighting, calming music and water features to help create a stress-free environment for the autistic volunteers and staff. Café Autisan manager Viktorija Kulikova says, “To watch Dan’s skills base increase and his confidence grow in such a short space of time has been amazing to see.” Working life can be daunting for autistic people, so support like this can be a great introduction. Viktorija says, “It’s a perfect opportunity for him to start his career in an environment where trained staff have a good understanding of people on the autism spectrum.” Dan would recommend volunteering at Café Autisan to others. He says, “Working here has encouraged me to learn new skills in a real working environment.” ●

• If you are autistic or know someone on the autism spectrum who is doing something amazing, we’d love to hear about it. Email



Christmas Classics? Sounds Good To Me… Thursday 29th December at 3pm Tickets: £12 This Christmas could be the perfect time to introduce your child to classical music. The Royal Concert Hall is running a relaxed performance of two wonderful winter classics – The Snowman and Peter and the Wolf – Narrated by beloved CBeebies presenter and Nottingham treasure Pui Fan Lee. This is the first relaxed orchestra performance to ever take place at the Hall, which means it has been specially adapted for those with additional needs –

including changes to sound levels and lighting, a less formal atmosphere and free movement throughout, including the use of special “chill out” areas at the front of house. A visual story and BSL Interpretation are also available at the performance if required.

…To You (to me, to you)? Thursday 5th January at 1.30pm and 7.15pm Tickets: £12 For the more traditional among you the Theatre Royal has also announced that this year Jack and The Beanstalk will be its Christmas pantomime.

Relaxed performances take place on Thursday 5th Jan at 1.30pm and 7.15pm and feature Benidorm star Tony Maudsley, X Factor finalist Chico and The Chuckle Brothers – known by generations of children for 290 episodes of their television show Chucklevision, their legendary catchphrase “To Me, To You” and a BAFTA for “service to British Children’s Television” in 2008. This show, which costs £12, will also feature a 3D spectacle showing Jack’s journey into the giant’s cloud castle! Both performances will also be sign language interpreted.

For details and to book for the relaxed performance of either of the above shows please contact Caroline Pope on 0115 989 5627 or For more information visit Theatre Royal and Royal Concert Hall, Theatre Square, Nottingham, NG1 5ND

Profile for The National Autistic Society

Your Autism Magazine - Winter 2016  

Your Autism Magazine - Winter 2016