Your Autism magazine - Summer 2019

YOUR Summer 2019

Giving it a shot

Matthew Chilvers on how tennis changed his world

Summer daze

Top tips on planning a trip

Express yourself

Communication tools for nonverbal people

Plus

All about pica, and opening up about PDA

YOUR

Comic turn

22

Communicate better

36

Summer 2019 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk Contributors Hermione Cameron, Greg Cranness, Florence Leslie HEAD OFFICE National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk SUPPORTER CARE TEAM 0808 800 1050 membership@nas.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@jamespembroke media.co.uk SUBSCRIPTIONS Only available to members of the National Autistic Society.

To join, visit www.autism.org.uk DESIGN AND PRODUCTION CPL (Cambridge Publishers Ltd) 01223 378000 www.cpl.co.uk 1 Cambridge Technopark, Newmarket Road, Cambridge CB5 8PB PRINT Warners Midlands 01778 391000 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 Summer Vol 53, No 2 National Autistic Society ISSN 2055-0413 The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism.

However, this does not imply our charity’s endorsement of any particular approach or product.

The inclusion of a website does not necessarily imply that our charity endorses or supports the group 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.

Anyone for tennis?

Contents

14

What’s new?

04

Plan a trip out

28

Awards special

11

Readers to the rescue

30

My diagnosis

13

Talking about PDA

32

Who’s for tennis?

14

Communication tools

36

Interview

18

Meet the team

41

“Being autistic helps”

22

Notebook

43

How to manage pica

24

A round-up of the latest news

Website founder Chris Bonnello

Jacob Richardson opens up

Matthew Chilvers talks sport

Chief Executive Mark Lever

Comedy writer Sara Gibbs

Plus James Frankish’s story

Tips for a day away

Learning social skills

How to explain it to your child

for non-verbal autistic people

School Exclusions Advice Service

Things to read, do and see

We’re doing... our Duke of Edinburgh’s awards

46

79% of autistic

people feel socially isolated

28

Summer 2019 3

What’s new?

Get in touch!

Our roundup of the latest news and views

Autism Act anniversary marked in Parliament To mark the 10th anniversary of the Autism Act, our charity has been working with the All-Party Parliamentary Group on Autism to explore what has worked, what isn’t working, and what needs to change to support autistic people.

Since January, we have received an incredible 10,000 responses to our survey asking autistic people and their families about their experiences. Thank you to everyone who has responded.

We have held inquiry sessions in Parliament with witnesses (autistic people, family members and professionals) exploring key themes including mental health; public understanding; employment; support for children; support in adulthood; and access to justice.

Over the coming months, we will

share Know Your Rights and Know Your Responsibilities information with autistic people and practitioners, and compile your survey responses and stories into a

report with key recommendations to the Government about what needs to change.

Find out more at www.autism. org.uk/autism-act

Building Belfast’s Centre for Autism We are excited to announce the development of our Northern Ireland Centre for Autism in Belfast.

The centre is designed specifically for autistic adults with complex needs, and will open in September 2019.

Complete with colourful multi-sensory rooms, the centre will provide a relaxed environment in which autistic people can develop new skills and become more independent. Each person will

4 Your Autism

have access to on-site behaviour support, speech and language therapy, and occupational therapy.

Shirelle Stewart, our charity’s Director in Northern Ireland said: “The centre will be modern, welcoming, and will use technology that has been specifically designed to support autistic people. We would like to thank everyone involved for raising vital funds for this project.” Keep updated at www.autism.org.uk/Belfast

News

British Airways achieves Autism Friendly Award British Airways has become the first airline to receive our Autism Friendly Award.

It has been recognised for introducing autism into staff training, increasing autism awareness among customers, and the process of getting on and off aircraft.

Read more at www.autism.org.uk/AFA

A big thank you!

You baked, quizzed and walked through the night for World Autism Awareness Week 2019. So far, the fundraising total stands at an amazing £264,000.

More than 4,000 schools signed up to fundraise and help their students understand autism better using our learning resources. And Health Secretary Matt Hancock MP even announced a new public awareness campaign about autism, to be launched later this year. Thank you to each and every one of you who took part to help create a society that works for autistic people.

Driving guidance The DVLA has clarified its guidance for autistic drivers, as a result of our concerted campaign when its guidance appeared to change in mid-February.

We were pleased when Julie Lennard, Chief Executive of the DVLA, wrote to us to confirm that autistic drivers only need to inform the DVLA of their diagnosis if they believe their autism could affect their driving. Read more advice at www.autism. org.uk/driving

Declare Your Care The Care Quality Commission’s new campaign, Declare Your Care, is calling on people to speak up about their experiences of health and social care.

If you’ve had a good or bad experience of a GP, hospital or care service, tell the CQC at www.cqc.org.uk/share-your-experience Summer 2019 5

News

Obituary

Alan Cheyney OBE, CChemFRCS 1934-2019

by Dr Jamie Nicholls

Brandon races ahead

Well done to 16-year-old Brandon Abraham, who is on the brink of realising his dream to become a racing driver.

Brandon’s most recent outing was a test day at Brands Hatch, as he prepares to compete in the 2019 BRSCC Mazda MX-5 Championship.

Brandon is also part of The Apsm Driver development programme at Silverstone, where he trains with some of the best instructors in the country.

Brandon said: “Ever since the age of four, I have always loved racing. I had more than 100 Hot Wheels cars, which I watched whizz around the track. And, after a 10th birthday karting party, I knew what I wanted to be – a racing driver.”

Brandon’s dad Paul added: “Brandon’s Asperger’s diagnosis has given him the ability to achieve a level of focus that allows him to race at such a high level.

He’s had a very successful karting career, with a great many trophies to show for it.

“Now he’s looking to the future with the hope of becoming a professional racing driver.”

6 Your Autism Autism

The National Autistic Society is a large organisation fulfilling many functions. It employs more than 3,000 people, but it is hard to imagine how it all began.

Autism was not on anyone’s agenda until the 1960s, when a small group of parents – who realised that their children had this condition – got together. There was no statutory or educational provision for them, but there was an obvious need for something. This group, including Alan Cheyney, banded together to create what was later to become the National Autistic Society.

In the early years, the organisation was run by volunteers from a couple of rooms in Ealing, west London.

Alan was Honorary Treasurer, with the accounts all written by hand in a ledger book. In the first 15 years, the group opened four schools and, realising that education was the key, started running courses on autism. This was all world-leading stuff. Alan was one of the four founders of the Inge Wakehurst Trust, dedicated to funding these courses.

Alan subsequently became Chairman of the National Autistic Society and was leading the Board when the decision to bring in paid professionals was made. He then took on the role of Secretary General of Autism Europe for several years.

He became a Vice-President of our charity in 1996, and was awarded the OBE for services to autism in 2000.

Alan is survived by his wife, Gillian, and three daughters, one of whom has Rett syndrome. The world of autism has a great deal to thank Alan for.

Hear from another founder of our charity, Michael Baron, in a video by autistic filmmaker Robert John Windows at http://bit.ly/M_Baron

Diary dates

What to do and where to go

May 2019

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in association with

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We’re making it as easy as possible to hold a stream-athon, put your gaming prowess to the test and raise funds to support the work we do. Head over to www.autism.org.uk/ gaming to get started, and see our toolkit on how to be a Spectrum Gamer. We’ve got top tips on gaming safely in our video and lots more.

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June 2019

The Autism Show

9 June 2019

Matilda The Musical

This relaxed performance takes place at the Cambridge Theatre, London, at 3pm.

Elements of this production will be adapted to reduce anxiety and stress, and lighting and sound levels will be adjusted.

Tickets are available at £25 and £10. You can book through the RSC Ticket Hotline on 01789 331111 or at the Cambridge Theatre Box Office.

Staged this year on 14-15 June in London, 21-22 June in Birmingham and 28-29 June in Manchester, tickets for The Autism Show are now on sale.

Our members can save 20% off the door price by using code NAS19. Book now at https:// autismshow.co.uk On the Friday, Sharonne Horlock, Strategic Leader at SEND, will be speaking on effective support for autistic children in mainstream schools and Dr Dido Green, Specialist Research Occupational Therapist at Royal Free Hospital NHS Foundation Trust, will be discussing how to support pupils with sensory difficulties.

On the Saturday, speakers include Georgia Harper and Sam Ahern, presenters of Channel 4’s Are You Autistic?, who will be examining mental health strategies, including the positive effects of stimming and embracing special interests. Autistic adult Michael Barton will talk about navigating education and employment.

26 June 2019

Autism and Adulthood Conference, London

Autistic adults can find sustaining employment a challenge, and face mental health issues.

This conference will focus on aspects of adulthood and will offer personal insight and best practice in supporting autistic adults. A reduced rate is available for members, autistic individuals, parents and carers.

Find out more at www.autism. org.uk/conferences

10-11 August 2019 Snowdon

We can’t wait to trek Mount Snowdon and reach the top with Team Autism this summer! If you’d like to experience stunning views over Snowdonia National Park, then join us in this incredible challenge at www.autism.org.uk/ snowdon19 Summer 2019 9

Awards special

“Everything that ever changed the world was invented by someone who was different” We caught up with Chris Bonnello, founder of autisticnotweird.com and proud recipient of our Professional Award for Outstanding Achievement by an Individual on the Autism Spectrum

impact on young people, so I decided to launch a website that might help other autistic people.

Four years on, with 102,000 Facebook followers, it’s fair to say it’s grown more than I expected.

What would you say to anyone struggling with feeling ‘different’?

When were you diagnosed?

wasn’t enough to make a person succeed – you had to learn how people worked, too.

If they have self-esteem issues, I’d ask why they feel they’re struggling.

Is it truly because they don’t like themselves, or is it other people encouraging them to not like themselves? When we start relying on other people to decide what our self-perception should be, things can get very miserable. Besides, everything that ever changed the world was invented by someone who was different. The world needs different brains, different perspectives and people who can think in different directions.

Why did you set up Autistic Not Weird?

What’s your new novel about?

I was 25. Before then, I was just known as the weird kid – in fact, when I was 10, an educational psychologist literally wrote “slightly odd personality” in her report about me.

What were your school days like?

I didn’t struggle at primary school.

I had social struggles, but I was deemed to have been OK because I was so intelligent. This was a double-edged sword: positive because I was seen for my strengths, but negative because my struggles were not seen as worth addressing.

My teenage years were harder, as I realised that raw intelligence alone

I left primary school teaching in 2014. But I missed having a positive

Read more from Chris at www.autism.org.uk/digitalYAM Find out who else won our Autism Professionals Awards at www.autismprofessionalsawards.org.uk

It’s a near-future war novel in which the soldiers are teenagers who escape an attack on their special school. I can’t wait to see what readers think of autistic heroes bringing down an army of cloned soldiers!

Summer 2019 11

Jacob Richardson

My diagnosis

“The diagnosis has been painful but helpful” Jacob Richardson writes about being diagnosed at the age of 25, and how it fitted a picture of everything that went before It was bittersweet when my autism diagnosis finally arrived. It was anything but surprising, yet also emotionally devastating.

Diagnosed at 25, I’d spent two years on an NHS waiting list – but this paled in comparison to a lifetime of difficulties and traumas. I realised that my other diagnoses – dyspraxia, OCD, ADHD and Tourette’s syndrome – were only scattered pieces of an autistic portrait.

I was raised by a single parent. She once worked as an art therapist, so I was lucky to benefit from her insight, but her many pleas for help were ignored.

Doctors and social workers dismissed

Read more

Just received a diagnosis? Read our advice on some steps you can take at www.autism.org.uk/diagnosis Want to share your diagnosis story here?

Email YourAutismMag@nas.org.uk

my symptoms as bad behaviour or even fabricated. Teachers often called me stupid, lazy and a daydreamer, and severe bullying led to me self-harming.

I had counselling with child and adolescent mental health services, but left school at 15, without qualifications, and suffered a mental breakdown. I still struggle with depression, which is, at least, eased by countryside walks and horses.

It hurts to recount this troubled past, but my psychologist has suggested I have advanced language and writing abilities. Family members describe me as a “human dictionary” because I am a reference for word definitions.

I have found success as a freelance writer, usually focusing on politics, with my work appearing in magazines in London and New York. Autistic people can go far when their skills are nurtured and harnessed.

I know experiences such as mine are, sadly, all too typical. The diagnosis has been painful, but helpful overall, at least reassuring me that I was not to blame.

I just wish my younger self could have understood the same.

Summer 2019 13

Real life

Who’s for tennis?

With a summer of sport upon us, autistic tennis coach Matthew Chilvers talks about his love for the game, and his aspiration to encourage more autistic people to pick up a racket I’m Matthew Chilvers, I’m 22 and I first started playing tennis when I was six years old. Since taking up the sport, I’ve joined several teams, and started coaching when I was 15. When I’m not playing tennis, I enjoy other sports and I’m currently studying for a Higher National Diploma in sport and leisure management at Loughborough College.

My autism diagnosis

I was initially diagnosed with dyspraxia and speech difficulties while I was at primary school. By the time I reached my teenage years, a lot more information about autism was available and my parents felt that I was showing autistic traits. After they sought a referral, I was diagnosed in 2011, aged 14.

Like lots of autistic people, I can get anxious. At these times, I tend to speak too quickly and it can be difficult for people to understand me. I also find it very difficult to make eye contact and, while it’s not as severe as when I was younger, I still experience sensory overload sometimes.

I try to manage these challenges by writing down anything that makes me anxious and I regularly do speech exercises.

Autism has given me motivation for everything I have achieved so far, as well as all my future goals However, I definitely see my diagnosis as a positive. It makes me unique and I certainly don’t see it as a barrier. I consider autism as something that has given me motivation for everything I have achieved so far, as well as for all my future goals.

Life off the court

I’m currently employed part-time as an Events Assistant for Hinckley and Bosworth 14 Your Autism

Real life

Borough Council, where I support the delivery of their events programme. This covers all sorts of great activities, including the Hinckley Feast food festival, the Christmas lights switch-on and the festive fun run. They’ve always been very supportive and made reasonable adjustments for me within the role. All the event marshals are aware that I am autistic and think about how they can best support me during a shift. They are also considerate in providing very clear instructions at a pace that is right for me.

At college, I am about to begin my final semester, in which I will be studying modules including advanced coaching and sports development. The course has taught me lots of practical skills that will be useful for a management role within the sport and leisure industry. I plan to complete a final top-up year and qualify with a BA Honours degree in sport management.

Why tennis?

As the American tennis legend Jimmy Connors once said: “Tennis is 90% mental.” It is a sport where you have to think about your game plan, assess your opponent’s weaknesses and keep your emotions under control. The level of concentration required for the sport makes it a perfect technique for managing my anxiety. Any time I pick up a racket, I become completely focused and forget about anything I have been worrying about.

The social aspect of the game has also supported me to develop my communication skills. As well as coaching, I’m on the men’s second team at my local tennis club and train with the Special Olympics East Midlands squad. Being in these teams has given me the opportunity to speak to lots of different people, and has helped me overcome some of the challenges I face with speaking.

Most importantly, tennis has given me confidence. My proudest moment was being selected as the East Midlands BBC Get Inspired Unsung Hero 2018. I believe it’s the first time someone on the autism spectrum has won the regional award. I got to attend

Matthew takes some tips from his tennis coach

Summer 2019 15

Real life

the televised BBC Sports Personality of the Year event and meet the other finalists, as well as famous sports stars such as Gareth Southgate and Jessica Ennis-Hill. This achievement has given me so much selfbelief to achieve goals and overcome other challenges, both on and off the tennis court.

An inclusive sport

I’ve got so much out of sport and would like other autistic people to have the same experiences I’ve had. Not only is it a great way to stay fit, but it can also offer a sense of belonging – I’ve made many good friends from playing tennis over the years.

Participating in sports on a regular basis can also offer the routine and structure that some autistic people appreciate in their lives.

At my tennis club, I help to run disability sessions that offer a welcoming, supportive environment for anyone looking to give tennis a try. The sessions cover skills that any tennis lesson would, such as footwork, hand-eye coordination, volleying, serving, and so on. However, the wonderful thing about tennis is that it can be adapted to suit any level or ability. This can involve things such as making the court smaller, or using bigger rackets or softer balls, which help make the game slower. I also think it is motivating for the participants that the sessions are led by somebody who also has a disability and appreciates the challenges they might be facing. It’s always very rewarding to see the participants smiling at the end.

I’d like to see other sports clubs offer similar sessions and taster days targeted at autistic people and others with disabilities.

I believe coaches could have a greater awareness of autism and understand how best to adjust their teaching style so that autistic people can fall in love with the sport – just like I have. I’ve recently been invited to join the Sport and Recreation Alliance Youth Advisory Panel, where I’m keen to advise sports clubs about this, and about other barriers that prevent autistic people from playing tennis.

16 Your Autism

Fancy having a go?

If you or a relative would like to try a sport, I’d recommend visiting your local authority’s website, as well as the Active Partnerships and Special Olympics websites. They have listings of sporting activities available for disabled people in the local area. I’d also suggest familiarising yourself with the sports club ahead of the session and, if you’re comfortable doing so, letting the coach know about your autism diagnosis. Don’t be afraid to make the coach aware of any adjustments you may require that could help you enjoy the sport.

In my opinion, sport should be inclusive, rewarding and enjoyable for all. You should never feel scared to give something a try and, if you really persevere, you never know where it might take you.

Find out more about getting involved in sports at www.specialolympicsgb.org. uk/find-a-club and www. activepartnerships.org

Interview

“All of our work must be underpinned by autistic voices” for granted about getting an education, and that education being adapted to suit their needs, was something that really struck me, because I was going through this process with my own kids.

You’ve said the first campaign you worked on was I Exist, about making people aware of autistic adults and their needs…

Chief Executive Mark Lever is leaving our charity in May. He reflects on his 11 years at the helm, autism awareness then and now, and what he’s learned along the way What initially attracted you to the National Autistic Society?

When I was approached about the job, I didn’t know anything about autism. But when I found out more, what came across loud and clear was the lack of fairness in the system.

All the reports I read highlighted the battles that many parents had to face just to get basic education for their children or any sort of support. In my interview, I highlighted this lack of fairness.

18 Your Autism

The panel were all parents of autistic children and they said I hit the nail on the head. Plus, autism didn’t seem to be particularly well known. It was a great opportunity to try to do something about that.

By lack of fairness, did you mean mostly in schools?

It was just access to everything, really. At the time, two of my four boys were in primary school, and two had just moved to secondary school. And all the stuff I would take

Yes, that campaign was to make the public aware that autism isn’t just about children. Autistic children grow up into autistic adults. For me, that captures the greatest shift we’ve managed to achieve. We’ve gone from a world of having to campaign to tell people that, actually, adults are autistic too, to campaigns about employment and autism-friendly workplaces.

I’ve seen the impact of that increase in awareness on a personal level, too. When I started, I had no family connection with autism, but during my time here, my second son was diagnosed with Asperger syndrome. Edward’s just coming to the end of a work placement year with a firm, and I think that, 11 years ago, the chances of an organisation providing support for an autistic person to do that would probably

Interview

Mark promoting our Too Much Information campaign in 2016

have been non-existent. So, on a personal level, I’ve seen the changes our charity has made.

How does current autism awareness compare with 11 years ago?

Our research shows autism awareness levels are much higher now and the public appreciate that a lot of people are autistic. The challenge is converting that awareness into understanding, as levels of understanding are still quite low. Although, if you go back 11 years, the public’s reference point for autism was Rain Man. At least now we’ve got a whole range of awareness films we’ve produced that really give people the opportunity to see what life can be like for an autistic person.

So things have moved on a lot – but we still need to really improve understanding.

What are your proudest achievements?

Having a far greater involvement of autistic people in our campaigning work. All of our work must be underpinned by autistic voices and getting people to tell their own stories. Then you look at our various campaign wins, including the Autism Act – the first autism-specific piece of legislation.

One of our lower-profile campaigns was called Careless, but what that did was help retain the eligibility criteria for autistic adults for social care. For me, that was one of my proudest campaigns because of the way we responded so quickly to a need and persuaded the Secretary of State not to change the eligibility criteria. I remember sitting in a car park at the 11th hour, talking to the minister about it.

But what makes me most proud is going to services and schools and

seeing the autistic people we are supporting happy, doing the things they want to do, and having access to an education.

We have incredibly dedicated staff who make a massive difference to people’s lives.

Is there a visit that will always stick in your mind?

Recently, I went to a leaving do of a member of staff at our Robert Ogden School who’d been there for 41 years. One of her very first students came back to see her. And it was really emotional because he’d gone to university and was now a software engineer.

He came back to thank her for everything she’d done to give him such a great start. And I thought, actually, that’s the proof – here’s a guy who’s happy, doing a job he loves – and that just captured it; that’s what we’re about.

Summer 2019 19

Interview

If you could change one thing for autistic people, what would it be?

At the moment, we make a big fuss when an organisation becomes an autism-friendly employer. We present them with certificates and that’s wonderful.

But I want autism-friendly employers to become something that we just take for granted. If Scope presented employers with a certificate when they put down ramps for wheelchair users, it would be embarrassing wouldn’t it? You’d think: “Why are we making such a fuss about doing this?”

But, actually, it’s no different from saying that we expect employers to accommodate and make adjustments for autistic people.

So I’m not knocking the fact that we do this work – but that’s the change I want to see; that we take it for 20 Autism

It’s really important to keep talking to autistic people and their families to stay connected granted and we don’t have to make a big fuss about it. And that it’s embarrassing for employers and organisations if they’re not being autism-friendly.

What are you going on to do next?

I’m going to be the first Chief Executive of a new start-up charity called Helpforce. It aims to increase the engagement and quality of volunteering across the NHS.

Any words of advice for your successor?

Crikey! Well, what advice can I give anybody? I’m sure my successor will do this, but it’s really important to keep talking to autistic people and their families to stay connected.

There’s the famous phrase, “when you’ve met one autistic person, you’ve met one autistic person”.

It is so true.

I’ve always tried to spend a lot of time talking to autistic people and their families, particularly when they’re unhappy with what we’re doing. You learn a lot from people when things haven’t worked out well. I think it’s so important because it’s really difficult as a non-autistic person to put yourself in the shoes of autistic people. You’ve got to learn as much from them as possible so you can see the world through their eyes.

Real life

“Being autistic helps with my comedy…”

Sara Gibbs is an autistic comedy writer for television and radio, with credits on The Mash Report (BBC 2), The News Quiz (BBC Radio 4), The Now Show (BBC Radio 4) and Dead Ringers (BBC Radio 4). She tells Florence Leslie about her autism diagnosis, what it’s like to be an autistic person working in entertainment, and how being autistic helps with her comedy

of sensory overload. After a long day, even a pinprick of light in the room or background noises can be too much. I always carry my sunglasses, noise-cancelling headphones and something pleasant to smell and, when I’m overwhelmed, I take myself off to a dark, quiet space to recover.

Being autistic is great in that I have a big social conscience – I care a lot about the world and the people around me. I’m thoughtful, diligent, honest and reliable. Being autistic also helps greatly with my comedy, as I often feel on the outside of things, looking in at absurdities from a different perspective.

How did you get into comedy writing?

I listened to both Amy Poehler and Tina Fey’s audiobooks, and was radicalised into becoming a comedy writer. I had no idea where to start, so I applied for the wonderful Writing and Producing Comedy course at the National Film and Television School and miraculously got in. The rest is history.

After a wave of publicity, several friends suggested that I might want to look into autism. I was initially dismissive as I had a very ignorant ‘Rain Man’ idea of how autism presents, but the second I read the clinical profile of autistic women, I realised I ticked every box. I was diagnosed in May 2018, aged 30. It was an emotional homecoming.

What is being autistic like for you?

Being autistic is who I am. Autism comes with its challenges, but also massive advantages.

I need a lot of help from my husband with everyday tasks like cooking, cleaning and general life admin. I struggle with all aspects 22 Your Autism

How has being autistic influenced your comedy?

Being autistic influences everything about how I see the world. I’ve been lucky enough to work on several autism-related projects, but, more broadly, I think I come at things from

I’m an equal-opportunities mickeytaker. I don’t put politicians on pedestals and I’m quite ruthless about not giving people free passes, so I’m happy to mock anyone

Photo: Sam Elliott

Why did you seek an autism diagnosis?

Real life

such a different perspective that it’s helped me to differentiate myself in a competitive field. I’m an equal-opportunities mickey-taker.

I don’t put politicians on pedestals and I’m quite ruthless about not giving people free passes, so I’m happy to mock anyone.

What are the barriers to employment that an autistic person may face in the entertainment industry?

A lot of networking is done ‘down the pub’, and a lot of the buildings are lit with fluorescent lighting and are open plan, so the few full-time jobs in entertainment can be difficult for autistic people to access. There are also energy issues. I don’t have a full-time job as such, and I would definitely struggle with a nine-to-five office environment. I tend to work my hours around my energy, which I recognise is an enormous privilege.

How do you feel that, as a society, we can remove those barriers?

Thankfully, in the entertainment industry, people tend to be very relaxed about differences and open to removing barriers wherever they can, but we’ve got a long way to go. The first step is education about autism, then finding ways around the things that each individual finds difficult. This could be offering flexible working, adjusting environments, forgiving social behaviours that seem clumsy, and not expecting autistic employees to join in a social office culture if they don’t want to.

What can we all do to create a society that works for autistic people?

A big old listening exercise. It starts with taking autistic people seriously and understanding that when we ask for adjustments it’s because we need them, not because we want things our way. If you take what autistic people say in good faith and react accordingly, you’re well on your way.

Hear more from Sara Gibbs in our Stories from the Spectrum interview at www.autism.org.uk/stories

Summer 2019 23

Advice

The causes of pica and how to manage it Dr Elizabeth Shea gives her advice on coping with pica – the desire to eat non-food items – and tells James Frankish’s story I never had the good fortune to meet James, but I heard a lot about him from those who knew him best: his family and those who cared for him. I quickly heard how full of life he was, how challenging his behaviour could be, and – most of all – how much he was loved.

Very sadly, I discovered all of this after he died, and during the inquest into his tragic and untimely death in 2016.

What is pica?

Pica is the persistent eating of non-nutritive – or non-food – items. These can include soil, paper, cloth, plants, plastic, chalk, paint, hair and wood. We do not know what causes pica.

Theories include a diet that lacks certain minerals, appetite dysfunction and the sensory consequences of eating the item itself. What we do know is that pica can be compulsive and very dangerous – and preventing it can be very difficult.

24 Your Autism

This article has been written in collaboration with James’s family.

It has a single purpose: to educate autistic people, their families, and autism professionals about what led to his death – namely, his pica. We hope to honour James’s memory and take a step towards preventing what happened to him afflicting anyone else.

About James

James was autistic, and had a learning disability and pica.

Throughout his life, many of his behaviours were described as very ‘challenging’, and included self-injury and anxiety. As a result, James was unable to keep himself safe and required a significant amount of care.

A few months before his death, James had moved to a new residential setting and was settling in. This was a very positive move as, previously, two other adult placements had not worked out.

James was 21 when he died.

The cause of his death was recorded by the coroner as the

‘obstruction of his airway and/ or cardiac arrest’. These factors resulted from James vomiting up plant material he had eaten.

A post-mortem exam also revealed James had a hard mass of plant material in his stomach, the medical term for which is a ‘phytobezoar’. This phytobezoar was found to have been a likely factor in his death, as it would have caused irritation and bleeding that, in turn, caused him to vomit.

The coroner’s inquest concluded it was not possible to know exactly how long the phytobezoar had been present in James’s stomach, but that it was likely to have been the result of James’s compulsive habit of eating plants, particularly conifer leaves. Shortly before his death, James was reported by his carers and family to be well and happy. Quite simply, no-one knew the phytobezoar existed – or even had a reason to look for it.

Spotting pica

Getting a diagnosis of pica can be the first step towards effective

Advice

Reasons for pica ● Lack of awareness of what is, and is not, a food ● To gain attention or avoid a demand ● To relieve anxiety or distress ● Social attention ● To obtain or escape something ● Lack of adequate nutrition ● Sensory feedback.

management, not least because early intervention may prevent harm and the need for more complex treatments further down the line. Health professionals who can diagnose pica include paediatricians, gastroenterologists, psychiatrists and clinical psychologists.

Assessment may include questionnaires and observation of the frequency of pica, what is being eaten and what led to the pica episode. James’s family found that reducing his stress by

James really enjoyed pool time

distracting him or helping him selfregulate using ‘twiddlers’ (fiddle objects made of pipe cleaners, bottle tops and beads) would sometimes help to reduce his pica.

They also managed his environment by banning or substituting certain items – for example, offering Twiglets as a substitute for eating wood. Parts of the garden were fenced off to prevent James from eating inedible plants.

The number one priority in the management of pica is to keep the person safe. This includes

monitoring for dangerous pica items that may cause an immediate risk of serious harm or death – such as choking, poisoning or gut perforation – and items that may cause long-term and chronic ill health – such as infections and blockages in the digestive system.

For autistic people who may not display outward signs of ill health or pain, it is crucial that they have access to regular health checks from their GP or medical specialist, such as blood tests, scans and physical examinations.

Staying safe

For autistic people who may not display outward signs of ill health or pain, it is crucial they have regular health checks

Preventing someone from gaining access to dangerous pica items is the most effective way of ensuring safety. However, evidence from James’s family and others indicates that removing or preventing access to a pica item can lead to Summer 2019 25

Advice

an increased level of stress and anxiety that intensifies the drive to obtain it.

As a result, managing anxiety by distracting the person towards other meaningful activities instead of pica can help. Indeed, any strategy that calms and lowers anxiety can be beneficial.

An assessment of the person’s sensory functioning can help with understanding which tastes and textures are likely to be preferred. In addition, interventions – such as a ‘sensory diet’, which helps to give the sensory input an individual needs – may lower stress and reduce engagement in pica. Providing a ‘pica box’ of safe alternatives to eat, such as foods of different tastes and textures, and chewy aids, can also help.

A detailed assessment of James’s pica never took place. This appeared to be, in part, because of a lack of knowledge about pica among the professionals involved with James, which is unfortunately common.

There were also no pica-specific assessment measures available during James’s lifetime. Very positively – although sadly too late for James to benefit from – there is at least one such measure now in development.

It was clear, however, that James’s family understood his pica. For him, it appeared to be a sensory need and compulsion that made him happy, and could calm him in times of anxiety.

● Dedicated to the memory of James Frankish (1994-2016) and written with heartfelt thanks to his family, Mark and Sarah Frankish.

26 Your Autism

Recommended pica strategies 1 Keep a look out for potentially dangerous pica items 2 Tell others (school, GP, health professionals) about pica.

Ensure information about pica is included in medical records, care plans and EHCPs 3R equest support from learning disability/autism or mental health services 4M ake sure the person you care for has regular health checks 5 Provide safe alternatives to chew and eat 6D istract away from pica and increase engagement in other activities.

James’s area in the garden was fenced with plastic coated wire to prevent him climbing it, but he could still reach through for edible plants

James was unable to keep himself safe, and needed a significant amount of care

Find out more about pica on our website at www.autism.org.uk/pica and from Dr Shea at https://network.autism.org.uk

How to…

Plan a trip out We asked for your tips on going out, and here’s what you said…

Look for landmarks

“I like to use Google Street View to see where I am going before I go, especially for landmarks.

“I also like Euan’s Guide [which has reviews of places by disabled people, www.euansguide.com] and visiting the venue’s website to check its accessibility page.

I tend to plan two options for public transport to help minimise my stress during disruption. I also carry an autism alert card and my own custom-made card, which gives the name of my home train station and asks for help to get me there, which I use if needed.”

Sophie

Make a choice

“Noel is one of the people we support at Catrine Bank. He thoroughly enjoys new experiences, but plans are needed in advance of activities going ahead. We recently took him on a day out to Glasgow.

We used visual choice charts to let Noel decide which activities he wanted to do, and he chose to go bowling and shopping.”

Euan, Team Leader at our Catrine Bank service

Online planning

“New surroundings, queuing and sensory overload can be challenges for Sam. Alton Towers offers a number of services that make our day out run as smoothly as possible. We register Sam’s details, plus proof of eligibility, and receive a unique code to access support services at the theme park.

We book our trip online, which reduces queuing when we arrive as they have already prepared his wristband and access pass. We

28 Your Autism

visit at off-peak times to avoid the opening-hour rush, and the wristband enables us to avoid long queues. We also hire a wheelchair from Alton Towers to give Sam a seat and ‘safe zone’, and to take him to the sensory gardens for a peaceful break. I take along preprepared images in a ‘visual story’ to familiarise him with what is next.

The staff are also really helpful and assist in any way they can to give Sam the best possible day out.”

Gillian, Sam’s mum

How to…

Our research

shows 79%

Enjoy time together

“After 16 years of planning outings with my autistic son, there are several essentials:

1

Plan ahead – and I mean everything, including hotels, cars, buses and trains.

Whatever transport you are using, make sure you have a ‘maybe’ option in case anything happens.

Plan for delays – make sure you have a favourite item or toy, and back-up for these, as well as snacks and distractions.

If you’re waiting for a train, ask station staff if there is a quiet room you can use until the train arrives (most do when you explain).

2 3 4 5

Teach your child about changes

using a surprise card, as this allows them to be prepared for something different happening.

When staying at a hotel, it’s a good idea to let the front desk know about your child’s autism, in case they decide to walk out of your room at 2am! Give a photo to security (it took my son two minutes to work out the lock.

He was six and was found in the arcade).

Most importantly, enjoy your holiday or outing.

Don’t let the looks that strangers give your child affect you (we all know they do) – it’s your time together, enjoy it.”

Karen, Richard’s mum Catch up on our Spectrum Live show about going out at www.autism.org.uk/spectrumlive Our branches organise regular autism-friendly activities. Find your local branch at www.autism. org.uk/branches. See our list of autism-friendly venues at www.autism.org.uk/AFA

of autistic people 70% of family members and

feel socially isolated. We are working

with venues to help them achieve our

Autism Friendly Award, to provide

a better experience

for autistic people and their families.

Summer 2019 29

Readers to the rescue!

Post your problems or answers on Facebook at National Autistic Society, email YourAutismMag@nas.org.uk, or write to: Your Autism, National Autistic Society, 393 City Road, London EC1V 1NG

Do you have a problem our readers can solve? Get in touch and benefit from the experience of our other members

Q

Can you learn social skills? People use self-help books, but is this like acting?

Can you learn how to socialise better, so it becomes an innate behaviour? Anonymous, via our online community on our website

in with what is expected – with what everyone else does. Living lives that reflect trends – such as using social media to communicate a perfect life – are all masks, an act to fit in.

Each person is different, For expert advice on Learning socialising skills so that they but I think many autistic any autism-related become innate behaviour is not so clearpeople can pick up social or issue, call our Autism cut. I see these learned skills as more of everyday life skills by practising. It may Helpline on 0808 a knee-jerk reaction to situations, rather take longer depending on where they are 800 4104 or visit than something innate. on the spectrum or if they have complex www.autism.org. uk/helplines As someone on the spectrum, I don’t needs. For many autistic people (including want to fit in by opting into a system myself), self-confidence can be a barrier. I’ve that would straitjacket me: I want to be me. met several people on the spectrum who are I wouldn’t feel good if my responses to social great with people, yet they have little confidence in situations were just following what others seemed to be their social skills. This is perhaps because of stereotypes doing. My feelings are innate, so my behaviour is innate. surrounding autism, and narrow views of behaviour I am getting more confident in just being who I am. I no considered ‘socially acceptable’. For example, I don’t like longer put on an act for the benefit of others, but it’s ‘small talk’ as I find it tiring and difficult, but that does not mean I am unable to socialise or connect with others. not easy, so I use strategies. Understanding I’ll probably have ‘social overload’ – which may lead to shutdown if I am not saying it wouldn’t be wise or that it is not I socialise for too long – I pace myself and take time out possible for autistic people to learn social skills. But it is if I need it. Knowing this, I can be with people and enjoy just as important for the rest of society to accommodate those who may not communicate in a traditional manner. it – and I can be myself. Marilyn Anonymous

A

Read Marilyn’s full answer at www.autism.org.

You can learn social skills; it’s what neurotypicals do from early school days. They assimilate a way of fitting

Help me next!

How do autistic people in full-time employment manage their anxiety, in work and out? What reasonable adjustments have helped, and are there organisations that assist via Access to Work? Erica 30 Your Autism

uk/digitalyam. Marilyn wins a copy of Fall Down 7 Times Get Up 8 by Naoki Higashida.

Send us your solutions to be in with a chance of winning a copy of A Practical Guide to Happiness in Adults on the Autism Spectrum by Victoria Honeybourne.

By writing to us with either a problem or an answer, you give consent for your letter to be published. We reserve the right to edit submissions.

Advice

How to tell your child about their PDA iStock .com / JohnnyGreig

Dr Glòria Durà-Vilà sets out some tried and tested strategies for explaining PDA to your child Pathological demand avoidance (PDA), or extreme demand avoidance, is a set of strengths and difficulties inside autism spectrum disorder.

People with this profile are characterised by an avoidance of everyday demands, rooted in an anxiety-based need to be in control.

The young people with PDA that I work with often ask me what PDA means and how this relates to their autism diagnosis.

More importantly, they ask how to make the best

of their strengths and to find ways to cope with, and overcome, their difficulties.

I also get frequent requests from parents to help them explain PDA to their child.

Helping your child

Whatever name we give to children’s difficulties, it must never reduce their complexity to a meaningless label; it should never put them into a box. On the contrary, it should help them and the adults caring for them to understand their own set of talents and difficulties, and to

About Gloria Dr Glòria Durà-Vilà is a Consultant Child and Adolescent Psychiatrist and Medical Lead for ASD in Surrey and Borders NHS Trust.

She’s the author of My Autism Book: A Child’s Guide to their Autism Spectrum Diagnosis and Me and My PDA: A Guide to Pathological Demand Avoidance for Young People. For more info, visit gloriaduravila.weebly.com

32 Your Autism

find ways to foster the former while coping with the latter.

No two people on the autism spectrum with PDA are the same – it is essential to find the bits that are right for them, and those that are not.

Over to you

Let me share some strategies I’ve learned working with young people to assist you in helping your child gain more self-awareness. ● Make them feel in control while learning about their PDA, and spare no efforts to reduce their anxiety. This is a little mantra to put them in the driving seat:

ou are the best teacher Y about YOU You are the expert about YOU Your parents, teachers and everyone who cares for you are really looking forward to learning from YOU about YOU.

● Carefully choose when to approach this topic and don’t rush the communication.

This is something to revisit again and again. ● Use their skills: their imagination, role-playing skills and drawing skills are your allies.

Advice

Don’t rush the communication. This is something to revisit again and again

Vital messages ● It’s not useful to compare people’s brains: brains are diverse and equally valuable. ● Our brain will be with us for life, so it’s wise to learn how to make the most of it. A good way to do this is to learn about yourself: understanding how PDA affects you is part of this process. ● You share the main characteristics of autism as well as sharing the main characteristics of PDA. ● PDA is not your fault. It’s not anyone’s fault ● Your PDA does not define you: it is a part of who you are, but not all!

Summer 2019 33

Advice

Communication tools New to autism and seeking support with communication? Our Autism Helpline Adviser Roula Carroll explores the many tools available to help non-verbal autistic people communicate For autistic people who rely on using different methods of communication, an effective communication support strategy can have a dramatic impact on their lives. It can enable them to express their feelings, or ask questions, and say what they need. It can help them build relationships with their family and friends, and to participate in school, work and play, live independently, and be involved in decisions about their future.

36 Your Autism

Finding the right communication method can allow autistic people to live their lives to the full and have the same opportunities as any other person.

Speech and language therapists and special educational needs (SEN) teachers or behaviour specialists can work closely with autistic individuals and their families, focusing on various methods and strategies to aid communication, while helping to find the right one for each person.

Communicating with the person you care for

There are many strategies you can use when communicating with autistic people, to make what you say easier for them to process and understand. It may seem obvious, but often it helps to speak in a clear, consistent way, to say less, and to give people enough time to process what you’ve said to them.

Using their name at the start of the conversation helps them know you are talking to them. Relating

Advice

The right communication method can allow autistic people to live their lives to the full

Many different symbol systems are in use around the UK, including PECS, above

communication to the individual’s interests is often successful, too.

There are many more tips at www.autism.org.uk/about/ communication

Methods to try

There are a variety of different communication aides available for non-verbal autistic people: Sign language and Makaton These systems can help some autistic people understand what’s being said to them. Signing can be used alongside or instead of speech.

There are different signing systems in use in the UK; more information on these systems and where to get training is available at www.communicationmatters. org.uk/page/signing

Written messages If an autistic person with a speech difficulty can spell, the use of an alphabet chart or keyboard can help them to communicate. A keyboard on a laptop, tablet or mobile phone can be used to spell out messages for others to read. If they find reading difficult, then special software is available that enables a computer to speak the words that are typed into it.

Voice output communication aids (VOCAs) These include a wide range of devices that have been designed to help people who are unable to speak.

A VOCA produces spoken words to help the user get their message across. VOCAs all work in different ways – for example, some store words or phrases and allow the user

to put together messages that are then spoken aloud by the device.

It is essential to seek independent professional advice to ensure that the person you care for is getting the right device to meet their individual needs.

Pictures and symbols These are commonly used by people who find speech difficult, to help them communicate effectively.

Many different symbol systems are in use around the UK, including PECS (Picture Exchange Communication System), but they all represent what users want to say in a picture format.

For example, with PECS, a child or adult is given picture cards to initiate communication or convey a request. There is evidence that PECS can build understanding and help to Summer 2019 37

DO YOU HAVE A BABY 0–11 MONTHS OLD, WITH A SIBLING OR PARENT WITH AUTISM AND/OR ADHD? The Studying Autism and ADHD Risk in Siblings (STAARS) project aims to improve early detection and diagnosis by learning more about the early development of babies with a parent or sibling with ADHD and/or autism.

Please contact us if you are pregnant or have a baby 0–11 months old. Travel costs to central London are reimbursed and special arrangements are made if you come from further away.

Tel: 020 7079 0761 • Email: staars@bbk.ac.uk Visit us at staars.org

BIRKBECK BABYLAB

LONDON’S EVENING UNIVERSITY

Advice

develop verbal language. The system can be built upon, and while it starts as a visual prompt, it can steadily be developed into a system for sentence construction.

Picture cards can be homemade – for example, photos or pictures of breakfast, brushing teeth, clothes, the shops, lunch and the park can be used to convey different activities throughout the day. The pictures can be displayed in order to form a visual timetable, showing the flow of the day’s activities for both children and adults.

The system also operates as an app for older children and adults to use. As with all assisted communication methods, it is important to ensure the same approaches are used consistently at home and school or college.

There are videos on YouTube to help with getting started with PECS, and free resources are available from these web pages: https:// pecs-unitedkingdom.com/pecs and http://bit.ly/Picture-exchange

Social stories These are communication tools that describe everyday life in a clear and meaningful way. A story can help individuals make sense of a situation, reduce their frustration and so ease unnecessary anxiety.

Many social stories deal with challenging topics, abstract concepts or managing emotions.

Links to examples of social stories are available at www.autism.org. uk/socialstories.

The website below includes examples of social stories that you can download: www.kansasasd. com/socialnarratives.php.

Social articles For autistic adults, social articles can be a brilliant approach to many issues, from employment, managing emotions, bereavement and relationships to topical stories and current affairs.

Social articles can take people on a journey into adulthood, exploring transitions, change, specific events, aspects of our life stories and the

general challenges of adulthood.

Each story is individual and tackles a particular topic. To do this, it is really important that the author understands the autistic person’s unique perspective of the situation before starting to write. This means time and effort must be given to exploring the autistic person’s take on the situation, and observing the situation from the autistic and nonautistic point of view.

Social articles describe life and, of course, that includes both positive and negative topics.

They are, however, addressed in a specific way so that the autistic person is both informed and reassured. Examples of social articles can be seen at https:// carolgraysocialstories.com

Read more advice on communication at www.autism.org. uk/communicating

Summer 2019 39

Meet the team

“I feel passionately about the rights of autistic children” Andrew Cutting runs our School Exclusions Advice Service. He chats to us about his job, proudest moment and love of the great outdoors What does your job involve?

My role is to support parents of autistic children and young people who have been excluded from school.

What inspired you to pursue this work?

I was a primary school teacher and deputy head for 17 years. In every class I taught there would be at least one autistic child who found it difficult to navigate the social and sensory world of school. I feel passionately about the rights of autistic children – not only their right to the best possible education, but also the right to be treated fairly, not discriminated against because of their autistic differences.

What’s been your best moment?

Providing evidence for an appeal at the Upper Tribunal. The Equality Act Regulations meant that schools didn’t have to make reasonable adjustments for disabled children with challenging behaviour, even if that behaviour was partly the result of a lack of support.

The judgment means this loophole no longer applies. Helping to bring about Read more about our School Exclusions Advice Service at www.autism.org.uk/exclusions

this change, alongside our campaigns team, was the proudest moment of my career.

Which parts do you find challenging?

We respond to 1,400 enquiries a year. In 2016-17, however, almost 5,000 autistic pupils were excluded for at least one fixed period. It’s frustrating when I can’t reply to parents as quickly as I’d like.

What do you do outside work?

I’m a big fan of walking. There’s nothing like waking up in a tent by a stream or on a mountain with no-one around for miles. I’m taking my son to the Highlands of Scotland this year, hoping it will ignite in him that same enthusiasm for the great outdoors.

Summer 2019 41

Notebook

Everything you need to read, do or see

The Autistic Alice

AUTHOR: Joanne Limburg PUBLISHER: Bloodaxe Books PRICE: £9.95 VERDICT: Powerful, honest and engaging poems for adults Joanne Limburg explores grief, loss and coming to terms with her autism diagnosis in this striking series of poems.

In the opening part of the collection, ‘The Oxygen Man’, Limburg writes about the death of her brother, a talented chemist who took his own life. She recalls childhood memories they shared as she tries to come to terms with her loss. The

Become a reviewer

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

language is a combination of simple and scientific (with descriptions of chemical elements), reflecting on the nature of grief.

In the second sequence, ‘The Autistic Alice’, the poet uses Alice in Wonderland as a metaphor for autism. Through Alice, Limburg draws upon her own experiences of growing up with undiagnosed autism. There is an eerie quality to the language, which encapsulates the feeling of being trapped in a nonsensical world of arbitrary rules and social expectations.

Hermione Cameron, Content Team Assistant, National Autistic Society and author of poetry collection Recipe for Being a Woman

Giveaways

We have two copies of Odd Girl Out by Laura James to give away to members.

Laura found out that she was autistic as an adult, after she had forged a career, married twice and raised four children. This book tracks the year of Laura’s life after she receives a definitive diagnosis, as she learns that ‘different’ doesn’t need to mean ‘less’.

To stand a chance of winning, send your name by email to YourAutismMag@nas.org.uk by 30 June, quoting ‘Odd Girl Out’. The winners will be announced in the next issue.

The winner of last issue’s competition to win a copy of How Best to Help an Autism Mum

by Sharon King is Alison Martin-Jones from Nottingham. Well done Alison!

Summer 2019 43

Autism best practice Conferences and Training We offer: • Specialist conferences • Training (open/scheduled dates, at your workplace or online modules) • University programmes • Train the trainer • Consultancy ”The talks were all really relevant to my field of work and I have come back able to pass on knowledge and information to the whole team.”

Conference attendee

Find out more:

www.autism.org.uk/events

Tailor-made, innovative education and care for over 50 years UK-wide day and residential placements for autistic young people aged 4-22.

Book a visit to one of our nine specialist schools today at:

www.autism.org.uk/schools

The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)

Notebook

Last Pick AUTHOR: Jason Walz PUBLISHER: Macmillan PRICE: £13.99 VERDICT: Witty, clever graphic novel for teenagers In Last Pick, the scooper aliens have landed and taken everyone back to their planet – except those they have deemed too young, too old or too ‘disabled’.

Autistic teenager Wyatt and his twin sister, Sam, have been spared because “they think we’re useless, because we’re strange”. Unhappy at living among the aliens, who

look at them with disdain, the siblings decide to step up and save the world.

Wyatt’s character is refreshing. Author Jason Walz, who has taught autistic students for 14 years, says: “My primary objective was to create an autistic character that didn’t fall into the typical tropes that often happen in fiction.

“I wanted him to be a fully formed human who just happens to carry a diagnosis of autism.” Wyatt has a nice turn of phrase about being autistic, saying at one point: “I like people, I just don’t know how to be around them.”

The first in a trilogy, Last Pick should appeal to teenagers looking for darkly comic graphic novels.

Suzanne Westbury, Editor of Your Autism

Our six favourite… books for young autistic children

1

2

5

and Joy Beaney

This offers easy coping strategies to help autistic children manage their emotions when out and about. Jessica Kingsley Publishers, £9.99.

In this colourfully illustrated book, Izzy, a young autistic girl, struggles with sensory processing. A great resource for teachers and parents. Amazon, £18.42.

Winston Wallaby Can’t Stop Bouncing Kay Al-Ghani

The story of Winston, a wallaby who can’t keep still, is a fun way to teach young children about autism, ADHD and sensory processing disorders.

WHSmith, £12.87.

It’s Raining and I’m Okay

Why Does Izzy Cover Her Ears?

Adele Devine

3

Leah’s Voice Lori DeMonia

With simple dialogue and beautiful illustrations, this book explores love and acceptance as Leah, who is autistic, and her sister embrace their differences.

Amazon, £9.82.

Jennifer Veenendall

4

My Brother Charlie Holly

Robinson Peete and Ryan Elizabeth Peete

A semi-autobiographical book about Callie and her brother Charlie, who is autistic. Ideal for siblings of autistic children. Amazon, £11.52.

6

The Red Beast K I Al-Ghani

Through eye-catching illustrations, this book helps children on the autism spectrum manage anger. Jessica Kingsley Publishers, £12.99.

Thanks to Your Autism reader Debs Burrell for suggesting this ‘six favourites’ feature.

Do you have an idea for our six favourites section? Email it to YourAutismMag@nas.org.uk

Summer 2019 45

Snapshot

We’re doing... our Duke of Edinburgh’s Awards Daldorch House School pupils have put their best foot forward in preparation for their bronze Duke of Edinburgh’s Award

Three pupils from our Daldorch House School in East Ayrshire have enlisted for the bronze Duke of Edinburgh’s Award (DofE) scheme.

DofE is a voluntary programme that encourages young people to take up new skills, volunteer in the community and complete a group outdoor expedition.

School Principal Bernadette Casey has confirmed that preparation for the award’s physical challenge is well under way.

She said: “At the moment, they are in the midst of the physical component, which is walking.

“We are supporting two young people to complete the Cairn Table walk, which is almost 9km in length and reaches a height of 600m above sea level, and another to walk increasing distances along Ayr beach.”

Pupils have also been brushing up on their baking skills, adding another practical activity into the mix.

Feeling proud The pupils are excited to be earning their awards, and their parents are proud to see them taking on new challenges.

The DofE Bronze programme is ideal for autistic pupils because each individual can complete the award at a pace that suits them.

Are you doing something amazing that you’d like to tell readers about? Let us know by emailing YourAutismMag@nas.org.uk

46 Your Autism

Above: Lewis completes the physical challenge and brushes up on his baking skills for his DofE award

Sue Cunningham, Principal Teacher at the school, described the award as “an opportunity to increase fitness and the general wellbeing of our pupils. It is an opportunity to work with other people, extending their relationship circle”.

Class teacher Mike Owens explained: “Completing the DofE provides lots of opportunities for young people to experience different vocational activities.

The award is flexible and inclusive.”

Once they have completed their bronze award, pupils can go on to prepare for their silver and gold awards, if they would like to.

We wish the very best of luck to all pupils and teachers involved.