Autism YO U R
www.autism.org.uk
MAGA ZINE
READY FOR CHRISTMAS? HOW ONE FAMILY PREPARES Autism and mental health
VOL 51 – NO 4 • WINTER 2017
Autistic and in The A Word We meet Travis Smith
Your guide to getting support
Quizzing the Governess…. The Chase’s Anne Hegerty on her Asperger syndrome
CARE FOR CARERS WORKING IN PARLIAMENT COPING AFTER YOUR CHILD IS DIAGNOSED
Winter 2017 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk
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WRITERS Alice Todman, Kat Salmons and Ricky Staines T H E N AT I O N A L AU T I S T I C S O C I E T Y HEAD OFFICE The National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk A DV E RT I S I N G James Pembroke Media Tel: 0203 859 7098 hoby.abdel@ jamespembrokemedia.co.uk SUBSCRIPTIONS Only available to members of The National Autistic Society To join, visit www.autism.org.uk/magazine C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 membership@nas.org.uk DESIGN James Pembroke Media www.jamespembroke media.co.uk PRINT Liaison Print Tel: 0113 275 3912 The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine Autumn Vol 51, No 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.
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y family are big fans of The Chase and this issue we’re delighted to bring you an exclusive interview with Anne Hegerty, aka The Governess! Anne opens up about her Asperger syndrome, including how it used to affect her at school and work. Read how she got her big break on The Chase too. Travis Smith is another person who’s just got his big break. The talented autistic 16-year-old brings the benefit of his experience to play new character Mark Berwick in the second series of The A Word. Read more on page 24. This issue is packed with advice from our readers too. From getting a diagnosis as an adult to preparing your children for Christmas, to looking after yourself as a carer – it’s all here for you. If you ever have any feedback or ideas to share, please email YourAutismMag@nas.org.uk. I hope you enjoy this issue and, although we’re still in November (!), I’d like to wish you a happy and peaceful Christmas. Suzanne Westbury EDITOR
Visit our Facebook page www.facebook.com/ YourAutismMagazine
43 Contents 04 News 11 Research in focus 15 Readers to the rescue 16 How do I… manage my feelings after diagnosis? 18 Interview: Anne Hegerty 22 Feature: Working in Parliament 24 Interview: Travis Smith 28 My story: The Boon family prepares for Christmas 32 Advice: Top tips for carers 36 Advice: Getting mental health support 41 Spotlight on support: Brain in Hand 43 Reviews 46 I’m a… chef
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News
A round-up of the stories that affect you
TO INFINITY AND BEYOND
Waiting times will be published and compared
Government to record autism diagnosis times Autism diagnosis waiting times in England are to be recorded from April 2018. The Health Minister made this groundbreaking announcement during a Parliamentary debate on autism diagnosis on 13 September. The Health Minister said, “Data will start to be collected as of April next year with a view to publication in 2019. That is hugely important because that will enable us to see which local areas are doing the job and which are not.” The Parliamentary debate was tabled by Bambos Charalambous, a new MP
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who attended a general election hustings hosted by our Enfield Branch. During the hustings, he was struck by the experiences of long waits for autism diagnosis and committed to raise the issue in Parliament if elected. Our charity has been campaigning to end the autism diagnosis crisis since 2015 and this is a big step forward. The next stage of our campaign will focus on making sure this data is used to hold areas to account to bring down waiting times. If you are seeking advice on diagnosis for yourself or someone you know, visit www.autism.org.uk/diagnosis
CONGRATULATIONS TO OUR supporter and space enthusiast, Oliver Jenkins, who won NASA’s competition to have his #MessageToVoyager beamed into interstellar space. The competition celebrates the Voyager mission’s 40 years of space exploration. Oliver’s message, below, was selected by NASA from 30,000 entries and then won the public vote. Oliver told us, “When William Shatner (I’m a Trekkie so that was amazing) read out my name and my message I screamed, shouted and was on the verge of (happy) crying. To know that my message is currently travelling billions of miles through interstellar space with the possibility of passing through up to 100 solar systems and lasting for hundreds of years is surreal. I take the most pride, however, in knowing that thousands of people around the world have seen my Twitter handle “@Asperger_Nerd” which will raise awareness for autism and prove to everyone that regardless of who you are, you are special and you can achieve great things.”
Oliver’s message is being beamed into space!
WINTER 2017 • NEWS
Jackie walked 24 miles along the Cornish coast
World Autism Awareness Week 2018 – get ready! World Autism Awareness Week
is taking place from Monday 26 March to Monday 2 April 2018. Want to take part but not sure how? Here’s what Jackie did last year… “The idea of walking 24 miles along the coast of Cornwall came from my friend, Samantha. I immediately thought this could be a great way of raising money. “I don’t think we realised how tough walking from Porthtowan to St Ives in ONE day would be. When we started training, Samantha’s 70-year-old dad, Barry, said he’d join us for a few walks but ended up doing the whole thing! Awesome! “My reason for doing this walk was to create more understanding of autism. My 15-year-old son Samuel has autism and although he is able to communicate, his behaviour can be misunderstood and
he often struggles through life because of his condition. Sharing posts about autism on social media helped to raise £3,750 and many of my sponsors told me they learnt a lot about autism. “However, for The National Autistic Society to continue to create understanding, more has to be done, so I am already training for my next event!” We will be holding Night Walks again on 17 March 2018 in London, Manchester, Bristol and Glasgow but, like Jackie, you can organise your own walk too. Register for your fundraising pack at www.autism.org.uk/waaw.
INTRODUCING PABLO New CBeebies show Pablo is the first animated TV series to star an autistic character. Voiced by an all-autistic cast, it sees the smart, funny and creative Pablo draw imaginary animal friends which come to life to help him handle situations which make him feel anxious. Catch it on BBC iPlayer. AUTISM-FRIENDLY PERFORMANCES NEAR YOU From Disney’s Aladdin to an outdoor performance of Oliver Twist, from London to St Andrews, we’ve had a busy year of fantastic autism-friendly performances. Find out about upcoming shows or sign up to hear when shows near you are announced at www.autism.org.uk/shows. LET’S DO BRUNCH Cook up a fantastic brunch menu from our selection of internationally inspired menus. Invite friends, family and neighbours to enjoy a sociable feast! And raise vital funds to help people on the autism spectrum be supported, understood and appreciated. Find out more at www. autism.org.uk/brunch.
Stars Shine for Autism We’re delighted to once again host our annual Christmas carol concert. Join us on Wednesday 6 December at St Clement Danes Church, Strand, London, and you’ll be treated to a host of your Christmas carol favourites, performed by the EC4 Music Choir. Plus a special celebrity guest reading or two! Buy your tickets at www.autism.org.uk/StarsShine. Enjoy all your favourite Christmas carols and raise money for autism
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NEWS • WINTER 2017
Pupils from Radlett Lodge School visited Pets at Home
Theresa May supporting our charity’s Autism Hour at the Conservative Party Conference
Justice for Laughing Boy On 4 July 2013, Connor Sparrowhawk, also known as Laughing Boy or LB, died in a specialist NHS unit. Connor, who was autistic and had epilepsy, had a seizure in the bath and no member of staff was on hand to stop him from drowning. Now, Connor’s mother, Dr Sara Ryan, has written a frank and touching account of her son’s early life and the #JusticeforLB campaign. The campaign has uncovered a wider failure by the NHS to appropriately care for people with learning difficulties. Tim Nicholls, our Policy Manager said, “Sara tells a powerful, and ultimately tragic, story of trying to get justice for her autistic son Connor, and how the system made that even harder.” - Read our full review on page 43.
NEARLY 5,000 BUSINESSES TAKE PART IN AUTISM HOUR Our charity’s Autism Hour was the world’s first mass-participation quiet hour for autism, after research showed that 64% of autistic people and their families avoid going to public places like shops. From 2-8 October, 4,977 shops and services across the UK hosted over 8,000 Autism Hours. Businesses dimmed lights and reduced music, and staff gained more understanding of autism – all simple steps towards a more autism-friendly world. Autistic shoppers and their families showed their appreciation for the event. A parent of an autistic adult said, “How wonderful. An hour for us to look and maybe not do all our shopping, but a chance to explore and feel
part of the community.” Autism Hour also received huge positive coverage from local and national media. We even trended on Twitter, meaning #AutismHour was one of the top five most talked about topics worldwide. Thank you to all our members and supporters who visited an Autism Hour, asked a local shop or service to sign up and shared the word on social media. We’ve already had dozens of businesses sign up for the next one!
Have you got your Christmas cards yet? Order from our fantastic selection at www.autism.org.uk/christmascards to raise funds and show your support for autistic people. Choose from our range!
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NEWS • WINTER 2017
Run for Team Autism in the Brighton Marathon
Download our new Christmas carol resources
DIARY DATES We’ve got a busy few months coming up, so make a note of our fantastic upcoming events: Professional conference/training Fundraising events 5 DECEMBER Autism and sensory issues conference, Leicester 17 JANUARY Social skills conference, Leeds 17-18 JANUARY Understanding the workplace for autistic women, London 1 FEBRUARY Autism and anxiety conference, Bristol 20 FEBUARY Sensory considerations, London 7 AND 8 MARCH The Autism Professionals Annual Conference 2018 25 MARCH London Landmarks Half Marathon, London 26 MARCH – 2 APRIL World Autism Awareness Week 27 MARCH Understanding stress and anxiety in autism, London 15 APRIL Brighton Marathon
Correction In the Autumn issue, we should have mentioned that Sarrie’s RFC, the autismfriendly rugby club of the Saracens Foundation, is sponsored by Alan Day Volkswagen, a car dealership. We apologise for this error.
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And we’ll do some carolling! Christmas carolling is a tradition that can be huge fun – but it can present challenges for many people, not least those who are non-verbal, less verbal, or suffer anxiety in social situations. To help make carolling more inclusive, we are providing advice on more accessible ways to take part. This can include carolling via Makaton or other non-verbal communication methods. We’re
also providing a how-to guide on “virtual carolling”− which can be done from the comfort and security of your own home or school, and then shared on social media. By taking part, you’ll be helping to raise money for our charity, as well as getting more people talking about autism. For more information, see www.autism.org.uk/carols
AUTISTIC WEIGHTLIFTER TRIUMPHS IN EUROPEAN CHAMPIONSHIPS Congratulations to Martyn Riley on coming first in his age/weight class in this summer’s European Weightlifting Championships in Sweden. We featured Martyn and his son Kobain, who is also autistic and a weightlifter, in our autumn 2016 issue. Martyn told us, “I am a four time British weightlifting champion. On Friday 18 August, in Halmstad Sweden, I managed to recover from a sensory overload, (thanks to my brilliant coach Nick Hall) to come first in my class in the European championships and broke my 15th and 16th northern England records! I also refereed in two categories to be the championships’ first autistic lifter, referee and champion!
Martyn raises the bar
“I managed to travel from the UK and home independently and I am very proud of what I achieved for myself, my country and autistic people!” Inspired by Martyn’s achievements? Visit http://britishweightlifting.org
Research in focus
Bringing you news of the latest research into life and work on the autism spectrum
Understanding autism in adulthood Many people felt that receiving a diagnosis increased their levels of self-acceptance
Dr Elizabeth Milne of Sheffield University’s Autism Research Lab writes about her research on anxiety levels and sensory sensitivities in autistic adults. I have recently completed a project, funded by the British Academy, which aims to further understand autism in adulthood, with a focus on people who received their diagnosis post-childhood. Eighty nine people took part in the study, 29 of whom had a diagnosis of either Asperger syndrome or autism (referred to as ‘autistic adults’ in this article). The 60 participants without a diagnosis varied in terms of the extent to which they identified with the autism phenotype − some people identified with many autistic traits whereas others identified with very few traits. A number of variables were measured including anxiety, sensory sensitivity, the extent to which people engage in ‘camouflage’ of their traits, and satisfaction with life. I also used EEG to measure brain activity in order to identify whether particular aspects of neurodivergence are related to particular traits of autism. I’m still working on the analyses and these data have not yet been subjected to peer-review, but initial results indicate the following: 1) Clinically significant levels of anxiety are highly prevalent in autistic adults. Just under half of the autistic adults had co-occurring diagnoses of anxiety. Moderate or severe levels of anxiety were found even in participants without a co-occurring diagnosis of anxiety.
2) Sensory sensitivities in autism were reported as leading to stress, anxiety, and exhaustion, but some people also reported positive consequences of sensory sensitivities including enriched appreciation of the environment and facilitation of hobbies, eg in creating and appreciating art. 3) One of the questionnaires used to measure autistic traits was the Ritvo Adult Autism Diagnostic Scale. This scale generates four subscale scores which are labelled “social relatedness”, “circumscribed interests”, “sensory/ motor issues” and “social anxiety”. In the autistic participants, the only subscale that was significantly correlated with life satisfaction was the subscale that measured “social relatedness”. This suggests that the more a person feels connected to a social network, the higher their satisfaction with life.
4) Although about half of the autistic adults described trying to camouflage their autistic traits in order to ‘fit in’, this wasn’t related to life satisfaction. Indeed many people felt that receiving a diagnosis ultimately increased levels of self-acceptance and removed some of the burden of trying to hide their autism. In the neurotypical sample however, increased camouflage of autistic traits was related to increased anxiety and reduced life satisfaction. Further analyses will be forthcoming, and I intend to publish this work in academic journal articles. ● More details about these preliminary findings are provided in a talk I recently gave at the University of Sheffield. You can access this, and other public lectures about autism, at The Sheffield Autism Research Lab YouTube Channel via http://bit.ly/Sheffield-AutismResearch
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RESEARCH • FOCUS Make sure we’re campaigning on the things that matter to you
Autistic people make more consistent decisions New research on decision-making by adults on the autism spectrum shows that they may be better at making rational decisions than neurotypical people. Published in Psychological Science, the research was co-authored by George Farmer, Simon BaronCohen, and William Skylark, at Cambridge University. The authors explained, “People with autism show reduced sensitivity to contextual stimuli in many perceptual and cognitive tasks. They are thought to focus more on detail and less on the bigger picture. For instance, some perceptual studies show that people with autism are less susceptible to some visual illusions. “We investigated whether this also applies to decision making by examining adult participants’ choices between pairs of consumer
products that were presented with a third, less desirable “decoy” option. Participants’ preferences between the items in a given pair frequently switched when the third item in the set was changed, but this tendency was reduced among individuals on the autism spectrum, which indicated that their choices were more consistent and conventionally rational than those of control participants.” “From an economic perspective, this suggests that autistic people are more rational and less likely to be influenced by the way choices are presented,” says Farmer. Read the full article at: http://bit.ly/autism -decisions
Autistic people may be less susceptible to marketing when choosing products.
Our annual BIG survey Our BIG survey is open until 30 November and we really want to know what’s important to you, and what you think about all that we do. Visit www.autism.org.uk/survey to complete our survey. Since 2015, we’ve asked you for your feedback through an annual survey: it’s not the only time we ask what you think but it’s the most significant. Last year, we heard from over 6,500 autistic people and their families, and from the professionals who work with them. And this year we hope that even more of you will participate. What you tell us is vital. It helps us make sure we’re campaigning on the things that matter to you. It allows us to check that our information and advice is what you’re looking for at the key stages of your life. And it helps us develop the training and conferences that will have the most impact on professionals’ autism practice. Last year, autistic people and families told us that our work challenging perceptions of autism in society was the thing you value most – closely followed by the website. We often need more resources to bring about the changes you’re looking for, but your feedback can help with this too. The more you can tell us about what would make a difference to your lives, the stronger our case is to funders and commissioners.
Find out more or get involved • Read autism research in the Autism journal at aut.sagepub.com. Members of The National Autistic Society get a 30% subscription discount. • Our website is a world-leading resource for autism information. Find out more at www.autism.org.uk.
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Readers to the rescue!
DO YOU HAVE A PROBLEM OUR READERS CAN SOLVE? GET IN TOUCH AND BENEFIT FROM THE EXPERIENCE OF OTHER PEOPLE FROM THE AUTISM COMMUNITY.
For expert advice and information
your behalf. (Mine did ... and an appointment materialised within days). Good luck. – Joanna
on any autism-related issues, call our Autism Helpline on
0808 800 4104
You can contact The National Autistic Society to find your local diagnostic centre I THINK I am autistic and want to get a diagnosis. But my GP says there’s no funding for adult diagnosis in my area. What should I do? – David, via Facebook IF YOU HAVE a mental health issue, try to get a mental health assessment and they will hopefully be able to refer you. I had to wait about three months, but the mental health team who assessed me agreed that ASD was highly likely and referred me. I am now on the NHS waiting list at the adult autistic diagnostic service. I shall have to wait, possibly for a year, but I will get a clinical assessment and hopefully a diagnosis. – Susanne
YOUR LOCAL LIBRARY should stock books on autism that will help you to decide if you are autistic. A book that helped me considerably is Freaks, geeks and Asperger syndrome by Luke Jackson. You can then ask your National Autistic Society branch where to find a diagnostic centre. Your local Community Mental Health Trust (CMHT) can also help you to do this. – Tim YOUR GP MAY be mistaken. Try asking your local trusts. Explain how a diagnosis would be important to you. If you get nowhere with that, contact your MP who may make enquiries on
I HAD THE same problem with my own GP who said that the practice was unable to do anything for me. However, she referred my case to the GP Commissioning Group for our area, who agreed to pay for a diagnosis after my mental health had been checked at the mental health department at the local hospital. Eventually they paid for me to be assessed by a private psychologist and for five follow up sessions to help me come to terms with the diagnosis. This took many months to achieve and so my advice to you is not to give up but to persevere until you get a diagnosis. – Chris*
We received a number of other responses to David’s question – read them at www.autism.org. uk/digitalyam
Help me next!
Other than work colleagues, I only have my partner for social interaction. I’m not lonely and I will do anything to find isolation following work, as I normally feel overwhelmed at the end of a shift. I hear, though, that social interaction makes us happier. Should I seek out friendships? - Anon via our online community SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of Special needs and legal entitlement - the updated guide to the legal rights of children and young people with special educational needs.
Post your problems or answers on Facebook YourAutismMagazine, email YourAutismMag@nas.org.uk, or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London, EC1V 1NG. By writing to us with either a problem or an answer, you give consent for your contribution to be published. We reserve the right to edit submissions.
*Chris wins a copy of Fall down 7 times, get up 8 by Naoki Higashida
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How do I...
manage my feelings after diagnosis
Seven years on from her son Anthony’s autism diagnosis, Louise Pay looks back at what helped her practically and emotionally at the time.
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nthony was diagnosed with autism when he was three. Back then he wasn’t talking and although he was a happy little boy, he was very much shut in his own world. When we were given the news, I was in total despair. I had all sorts of questions such as, will he ever talk, will he ever live independently? I was overcome with fear for the future. Many professionals and books will describe it as a grieving process and in a way, that’s what it felt like. I also had a stereotypical view of what I thought autism was. The only knowledge I had about autism was from what I had seen in the media. I now know there is so much more to autism than meets the eye and most people I know on the spectrum are the most loving, polite, humorous people. Dig a little deeper into autism and you will find some of the most interesting and inspirational people in society.
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Seeking out support
Soon after diagnosis, I was determined to help Anthony the best way I could so I threw myself into researching autism. I got in touch with my local National Autistic Society branch and got some great information on services in my area. This also led to finding out about The National Autistic Society’s EarlyBird course. Not only was it great because I met other parents going through something similar but it helped me to understand the reasons behind many of Anthony’s behaviours. They also gave me lots of strategies and advice to help.
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Education
Although Anthony was at nursery when he was diagnosed, it didn’t stop me worrying about what would happen when he started school. I wondered whether he would be able to cope or form friendships. It was a frightening thought. However, having a diagnosis helped to get the extra funding and support he needed. Once he started school he also got access to speech, language and occupational therapy. I know sometimes as parents we have the worry about labels and how this will affect our children. But the truth is without a diagnosis our children may not get the help they need. With the right support and interventions, they have every chance to succeed and reach their full potential.
The diagnosis helped Anthony get support at school
HOW DO I? • FEATURE
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Meeting other parents
If I were to give you one great bit of advice, it would be to meet other parents who have a child on the spectrum. The first time I went to a parent support group I must admit it did feel a bit daunting walking into a room full of strangers. However, I soon realised it was one of the best things I could have done. It was so refreshing to hear other people’s experiences. It finally felt like I wasn’t alone and it was so comforting to know that I wasn’t the only one struggling with my child’s bedtime, speech, challenging behaviour and everything else in between. Not only that, I have made some wonderful friends along the way.
Daniel Tammet
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Others on the autism spectrum
One of the biggest sources of help for me has come from inspirational people who are autistic. People such as Temple Grandin, Carly Fleischmann and Daniel Tammet to name but a few. They describe what it feels like to have autism which has given me so much insight into how my son experiences the world around him. Now whenever anyone asks me how to help an autistic child, I will always say, “The first thing you need to do is read first-hand accounts from people who are autistic themselves, that is the most valuable knowledge you could ever have.”
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Now
Anthony is now ten and has come on in leaps and bounds since his diagnosis. He has come a long way from the little boy trapped in his own world and in fact, now he does not stop talking. He’s getting on really well at school and has hobbies such as climbing, archery and riding his bike. Oh, and of course Minecraft. I sometimes think if I could go back in time and talk to that person who was in despair fearing for the future, what would I say? Well, I would tell them this, “Hey it really will be okay, your son is going to be amazing and you will look back on this and know there really was nothing to fear.” Was this advice helpful? Let us know at YourAutismMag@nas.org.uk.
Useful resources
• Louise is a volunteer advisor for our Parent to Parent service, a UK-wide confidential telephone service providing emotional support to parents and carers of children or adults on the autism spectrum. The service is provided by trained volunteers who are all parents of a child or adult on the autism spectrum. Call 0808 800 4106 – the service is free from landlines and most mobiles. • Find your local branch at www.autism.org.uk/branches.
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Anne sought an autism diagnosis
FEATURE • ANNE HEGERTY
“I have to plan ahead
really carefully” The Chase’s Anne Hegerty talks frankly about her Asperger syndrome, struggles at work and how she became one of ITV’s top stars. I N T E R V I E W B Y S U Z A N N E W E S T B U RY
For many autistic people, their school days were a very unhappy time. How was school for you? I didn’t enjoy it much to start with. When I was about five, I used to come out of school, fling myself on the ground and kick my mum violently on the shins. The teachers thought I behaved really well at school and mum couldn’t understand why I suddenly went bonkers at the end of the day. It was simply the transition. I did get bullied a bit and I remember being baffled by a lot of things. Baffled at the way so many kids seemed to just instinctively know stuff that I didn’t seem to know. They understood how to make friends, they also understood why to make friends. I can remember being told ‘so and so wants to be friends with you’ and thinking ‘no, that’s fine thanks, I’m OK, I’m not really looking for a friend’. The girl in question was sitting on the staircase and I asked if she’d let me pass and she said ‘no, you’re not my friend.’ OK, so I have to be either a friend or an enemy, right? Why can’t I just be a cat who walks by themselves? When I was eight I was walking around the playground clutching a book called Intelligence tests can be fun. I probably got it from my dad, he was in favour of me doing things. My mum would say, you can’t do that but I love you anyway. At age 11, the teachers told my mum I wasn’t doing my homework. And I wasn’t, because I just felt quite bewildered about what I was supposed to be doing. Information that comes
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in through the ears can be subject to processing issues and a lot of the time I simply didn’t get what people said to me if it wasn’t written down. The local authority eventually agreed for me to go to boarding school under special needs legislation. They weren’t sure what my special needs were, they just thought I’d got some. I think I was labelled as maladjusted. After the initial shock, it was very good for me because it was much more structured. At the end of the first month, they posted up the grades and I was last. And I thought, I can certainly do better than some of the others here. By the end of the year, I was top. You’ve said in recent interviews that in 2003 you saw a documentary on autism and recognised you had some of the traits. What did you recognise in yourself? It was this film about autistic children and it was the way that one of the boys, when he was really upset about something, he just squealed in this desperate way and I thought, I used to do that, sometimes I still do that. I suddenly realised there was this list of criteria for being on the spectrum and they were all things I used to do as a child. Is that when you sought a diagnosis? I did an enormous amount of reading, went on the Internet a lot. I figured out some places I could get a
diagnosis from. When I walked in, the receptionist was quite startled when I said ‘Hi I’m Anne and I’m here for the appointment.’ She expected me to be non-verbal. The doctor reckoned I had it. I’d done that test that everyone does. I’ve had friends say to me, oh yes, I did that test and I was between 29 and 33 so that probably places me pretty much on the spectrum, doesn’t it? And I’m sitting there thinking, I scored 40 without any difficulty at all so if you’re on the spectrum, I’m definitely on the spectrum. How does your Asperger syndrome affect you now? I can’t think fast. It’s one reason why I plan ahead really carefully. I’ll have a plan B, C and D. Driving somewhere, I won’t just put the address in the sat nav, I’ll go on Google Maps and Streetmaps and see exactly where it is and I’ll make sure I can park. Some people will just type the address in the sat nav. If I did that, I’d be completely dumbsquizzled. How do you cope with being on TV in front of millions? That’s different. I quite enjoy working with the audience. Partly because, for reasons best known to themselves, they like me. That astonished me. In a sense, I expected that I would become famous. I never expected I would become popular. But I don’t really get nervous when I’m doing The Chase because I know what I’m doing. It’s just requiring me to be a nerd. I get more stressed driving down to Elstree.
“At eight I was walking around the playground clutching a book called Intelligence tests can be fun.”
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“I have this tendency to come across something that interests me and just learn everything and get immersed in it.” Has having a diagnosis helped you? If so, how? Yes, it made me feel better. I feel if people ever say to me ‘I understand you identify as autistic’, actually I don’t do any ‘identifying’ at all. Objectively, I conform to scientific criteria drawn up by people who aren’t me. I kind of feel that distinction is important. What I do mind a bit is people going around claiming that they are neuroatypical and what they mean is simply they are depressed and anxious, shy and introverted. It’s perfectly possible to be a shy introvert, who’s not on the spectrum at all. I feel that the difference is that the introverts often want to have a really intense friendship with one or two other people and talk to them for hours and I hate that. And I also get some people who claim they are neuro-atypical and they’re mentally ill. And you think, no, no, no – you’ve got an issue with brain chemistry which can be adjusted with drugs or therapy. So it’s nice to have the diagnosis and say look, other people believe in me. I can produce the spreadsheets that I made and I swear I did this. I drew up some charts with the autism criteria down one side and then a load of ‘I do this now’, ‘I used to do this when I was a child’. That alone made my GP think I was on the spectrum! What’s the best thing about being autistic? It makes you very thorough and meticulous which was very good for me when I worked as a proofreader. And it gives you that sticky memory which means that I know a lot of stuff.
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It’s partly that I’ve always read a lot and retained it and partly that I have this tendency to come across something that interests me and just dive down a rabbit hole, learn everything and get immersed in it. What was your experience of the workplace? I was a freelance academic proofreader. It’s a very good job for someone who wants to stay at home and read books. I would only have needed to be able to work for three hours a day to make a reasonable living but I couldn’t even do that. Things were upsetting me more and more. I’d get a phone call, there would be a ring at the doorbell and I couldn’t do anything for the rest of the day. I was just so jittery. And I actually produced an extra page for my CV to explain to people what I needed from them because I was autistic and even that didn’t seem to help. There were people who just wanted, what seemed to me, to be unnecessary amounts of communication. Our research shows that just 16% of autistic people are in full time paid work. Why do you think this is the case? That doesn’t surprise me. I’m very fortunate that The Chase pays well enough that I can take the amount of time off that I need to take off. It’s just simply that if I’m stopped in the middle of something, it’s hard to get started again. I always remember the story of Oliver Sacks going to see Temple Grandin. He was on the phone to her and she was reading out directions to her house. He interrupted her and she
started all over from the beginning. And he realised, let’s not interrupt the autistic person! Basically, what happened was that everything was just grinding to a halt. I was just unable to get jobs finished. I went on benefits in 2008 for two years. How did you get involved with The Chase? In the late 1980s, I did Mastermind and found out about the UK’s high level quizzing circuit. Then I auditioned for Eggheads and got it. I went along to the world quiz championships next year, and ended up being the highest scoring woman in the UK. I met Mark Labbett there who said “you just beat me, who are you?” He recommended that I watch The Chase. Then another quiz organiser put me forward to be a chaser. It took a few auditions but I got the job. What’s been your proudest moment? I’m delighted that The Chase has won two national television awards. And we won Let’s sing and dance for Comic Relief this year, without Bradley. I think Bradley is the main reason why The Chase is so successful. And because of that, you always feel am I any good at anything or is it all down to Bradley? So it was nice to do something where it was us doing it. I’m very proud of that. ●
Find out more
• Read more from our exclusive interview with Anne Hegerty at www.autism.org.uk/digitalyam.
FEATURE • CAREERS
Life as a Parliamentary researcher
Walking the corridors of
power
This year, Robbie Lammas achieved his dream of working in Parliament. Diagnosed with Asperger syndrome aged 10, it hasn’t been an easy journey. He writes about his job and why he wants to be the first openly autistic MP.
I
never thought I would be writing for this magazine in a small office tucked away within the maze of buildings old and new that is our Parliament. Dimly lit, my Member’s office has a modest Georgian style single pane window that struggles to let in enough light through the shatterproof netting installed estatewide as part of bomb precautions. A sign of our times. There’s a small TV on the wall that squeaks away quietly throughout the day, alerting my subconscious to any potential policy developments in the Chamber − ahead of time. I am surrounded by letters to and from constituents. Some are drafted on behalf of constituents to be sent to the relevant Minister,
Robbie with Boris Johnson
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others are painstakingly researched to ensure the best possible reply to questions asked of my Member − but all are satisfyingly printed on official portcullis headed mustard paper. The same as has carried messages that have shaped our society for hundreds of years. Indeed, tucked away in this old office, even the air smells Parliamentary. Here I am and I love it. Working in Parliament has been a dream of mine since the age of 13. This was the same age I visited Egypt with my family and discovered I was already some three years older than when King Tutankhamun ascended to the throne. I thought I had better get a move on. With a typically autistic black or white view of the world, my political ambitions grew with age in accordance with my increasing frustration at being unable to change my environment in line with my beliefs. Having difficulty with social interaction, communication and imagination, I took a while to realise that there were appropriate outlets for me to effect change. I became obsessed with the school council, then Youth Parliament and the rest followed. The communication skills I originally lacked were developed
by my school’s SENCO, Lyn Levy, and slowly grew to match my passion. I went from a shy socially inept boy to the school captain. Such a credit to the support I received. AFTER UNIVERSITY More recently, following my graduation from Royal Holloway University with a degree in Geography, Politics and International Relations, difficulties returned. This seems to be the case for each transition or ‘new chapter’. It was my first ‘shut down’ since joining secondary school. I found my ‘chronic fear’ of the unknown returning, only this time accentuated by the heavy burden of responsibility I placed upon myself to get a job that I could do well, enjoyed and that paid well. It remains my passion to pay my mum back for all the support she has given me over the years. While I worked the summers of my university studies, opportunities seemed to come in manageable amounts and in environments I was broadly familiar with. Being faced with a world of possibilities was a nightmare. I misunderstood the difference between academic achievement and workplace
“I could not contain my energy. I knew, finally, I had found my outlet.”
FEATURE • CAREERS
On the campaign trail
councillors. There I was surrounded by politicians, speaking directly to the public about what I am passionate about – performing democracy in its purest form. The combination of my obsession – politics − with my hard earned public speaking skill set was dreamlike. I negotiated a sabbatical from my work and committed to Ms Crouch full-time, every day for the duration of the campaign. I was privileged to see first-hand just how many families had been helped by Tracey Crouch and watch and learn from her incredible engagement skill. I could not contain my energy. I knew, finally, I had found my outlet. During the campaign I spoke to over 1,000 constituents all over Kent, walked 300 miles and posted a video on Facebook which was viewed 2,400 times. Not bad for someone who once struggled to look classmates in the eye. Robbie works for Tracey Crouch, Minister for Sport and Civil Society
experience. I applied for directorships of companies and executive teams of multinationals. What made my inevitable disappointment worse was that on one occasion I came close! Exhausted and frustrated I was disappointed to re-discover, aged 22, that my burning desire to effect positive change in the world was still not akin to the confines of this neurologically typical world. Had I not learned anything at all? With negative thoughts reverberating
in my mind, my family became increasingly concerned for my mental wellbeing. Working jobs in different sectors, gleaning all I could from any potential social impact I made, I was beginning to give up on my dream. Then Theresa May called that snap General Election. I took a chance and messaged my local MP, Tracey Crouch. It changed everything. Kind enough to take a chance on me, Tracey invited me to join a canvass session along with local
FUTURE AMBITIONS Following the campaign, which included a random emergent interest in door knockers, Tracey has generously been training me along with her experienced office team to perform the role of Parliamentary Assistant at Westminster. With an unfettered outlet for my passion I am on my way to build my dream of a Parliamentary career myself, perhaps becoming the first openly-autistic MP. I am determined, more so than ever, to become a senior politician, helping make Britain a more transparent, productive and compassionate global nation. My life’s mission is to make the only barrier between potential and reality self-determination. ●
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FEATURE • TRAVIS SMITH
Travis (middle) with the rest of the cast
The A Word’s
newest star Sixteen-year-old autistic actor and singer Travis Smith plays Mark Berwick in the new series of The A Word. He talks about his big break, raising autism awareness and his advice to other budding actors.
How does your autism affect you? Autism has affected me all my life – negatives and positives of course. It affected me more when I was younger, especially in the school environment. I had a lot of trouble making friends. I was a very anxious person, very low confidence. It’s always going to be there, the anxiety and things like that, but I like to think I’ve managed to change in a way that’s helped me to make friends and reach out to people. I’m still going to have low confidence but I’m getting there.
Pretty much so. School was never a good place for me. We’re talking primary schools, anything to do with change, anything where I would have to interact, lots of people. There have been times when I didn’t know what to do, so I’d run out of school all the way home, miles away.
autistic people to come and audition. It was the BBC and I instantly told myself – no, I’m not going to get it. My incredibly supportive mum and stepdad convinced me to try. We drove down to London and I did a 10 minute audition. A few days after, I found out I was Mark!
When did you get diagnosed? I was lucky enough to have a mum who was able to recognise these things at a very young age. My mum always knew really. We got the official diagnosis when I was about nine.
What made you anxious at school? Was it the whole social environment?
Congratulations on your award from Hope GB for raising autism awareness. Do you think the general public understands enough about autism yet and how to help autistic people? We’re getting there. Some people are under the impression that because a close family friend has autism, they know every aspect but it’s very important for people to realise that the spectrum is massive. If they want to understand it, they can’t just understand one specific person. They need to understand all of autism as a whole.
What’s Mark Berwick like? The only way I can describe Mark is he’s me, a few years ago. He’s on the autism spectrum and is incredibly anxious, he relies on his mum a lot to do things. He’s very nervous and shy around anyone he isn’t used to. He’s very low in confidence, even getting a few words out of him would be a big thing, and he has a lot of meltdowns. That basically describes me and my autism, quite a few years ago.
Competing in the Voice of the Valleys
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How did the opportunity in The A Word come up? Well, my mum’s very interested in autism, having me as a son! She follows a lot of autism sites and one day she found an open call for
So you could bring your personal experience to the role… Exactly, I could bring a lot of my past self into it, to try and make him as realistic as possible. Obviously the producers wanted someone autistic to play the role, which is fantastic. Yes, I think they believed that was a necessity. What did you enjoy most about being in the programme? There wasn’t a single thing I didn’t enjoy. I am so grateful to those people who made my first job the
FEATURE • TRAVIS SMITH
“The only way I can describe my character Mark is he’s me, a few years ago.” best experience of my life. They made sure I understood everything and that I knew what was going on, 24/7. Changes in the script or changes in where I was going to be on a certain day, they would let me know straightaway. As soon as I got the part, people told me, “be careful, it’s a cut-throat business” but I was blown away by how supportive everyone was. As The A Word is on the BBC, getting people’s scenes done on time is a big thing. Because I have dyspraxia I struggle with things
Being presented with his award for raising autism awareness
like shoelaces and buttons. They understood that I’d need extra time to change and that my mum might have to step in and help me. What was it like working with the rest of the cast? I was star-struck! Actually the first time I saw Lee Ingleby – he shook my hand and I didn’t know what to
say, I was staring at him for about 10 seconds because I didn’t know how to react! They were all incredibly kind, supportive and comforting, considering how nervous I was. I went away knowing a lot more about acting and how to cope with it, from their stories for me. And I’m still in touch with some of them.
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I ever get to the point when I’m not nervous, I’m probably going to be nervous about the fact that I’m not nervous! But once I’m on there and I’m singing my heart out and going all for it, I’m fine, the worry drops from me and I just do my best.
Travis wants to make acting and singing his career
Did you find any part of the experience challenging? The biggest challenge for me was being able to believe in my abilities. Now I’ve gotten to the point where I know I wouldn’t be where I am if I didn’t have some sort of talent but when it first happened I was still in shock and disbelief. Every train journey, I would say, why me? Thousands of people went for the role. Programmes like The A Word do a lot to raise autism awareness. What did you think of the first series? I can’t believe how much I related to Joe and how realistic they made his character, so similar to me! How he always listens to music for instance, to really express himself and shut himself out. When I was about his age, I would always do that. As well as acting, you’re a singer. What type of music do you perform? When I first started, I was strictly musical theatre. But when I joined a local competition in Wales called Voice of the Valleys for VOTV, they convinced me to mix it up a bit.
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“I could bring a lot of my past self to the role to make Mark as realistic as possible” I sang everything on that show from Robbie Williams to Creep by Radiohead. Congratulations on finishing as runner up in the series – how do you feel when you’re on stage and singing? Before I’m on stage, I’m petrified. If
Find out more
Where do you want to go next? Do you see yourself acting, singing or both? If I can get to the point when I can make acting and singing my main thing, I’d be happy forever. I’m 16 now, and 6 foot 4. I’m not going to be able to play a child and I’m not at the age when I could play an adult. For now, I’ll just go with the flow and when the time comes to go out there, I’ll be incredibly happy. We’re looking for an agent now. At the moment, I’ve got an apprenticeship at an independent radio station called Able Radio where I help people with learning disabilities to create their own radio shows. What’s your top tip for any other budding actors or singers out there? Don’t hold back. Don’t listen to that voice in the back of your head that says you’re not going to do it. When I was auditioning for The A Word, I had that voice in my head saying “you’re going to ruin this, don’t do it, turn back.” Throw those thoughts to the back of your mind and just live with the moment. Say “you want to do this, you were born to do this.” Go in there and do the best that you can and whatever happens, happens. One day, if you keep trying, you’ll get your break. I’ve been so lucky to get mine at 16, that’s crazy. Are you ready to cope with being recognised in the supermarket? Can’t wait, bring it on! ●
• Let us know what you think of the second series of The A Word when it returns on 7 November. Email us at YourAutismMag@nas.org.uk with your thoughts. The National Autistic Society advised the producers about autism and its impact on other family members. • Hear Travis sing in the Voice of the Valleys competition on YouTube at http://bit.ly/Travis-Smith
FEATURE • MY STORY
My story
Samuel and Thomas love Christmas but need to be prepared for the inevitable changes to their routine
Helen, Neil, Samuel and Thomas The Boon family live in Coventry. Helen spoke to us about autism in their family, and the challenges they face each Christmas.
S
amuel and Thomas are six-year-old twins. Samuel has been diagnosed with autism, and we are currently waiting on a diagnosis for Thomas. Autism is such a varied condition, and is completely different in each of our sons. From birth, Samuel has struggled with sensory sensitivities. He has high emotion, anger and anxiety levels and would get considerably frustrated when he wasn’t able to do certain things, like crawling. Thomas is a bit more laid back, but asks more questions and really struggles socially. His only friend is
Samuel. He knows he is different, and he finds this really hard. Neil and I encourage our boys to socialise, but Thomas cannot bring himself to do this just yet. We don’t want autism to be a word we don’t use. We encourage our boys to talk to their peers about it – educating children so they are understanding from a young age. We know it is hard for people to fully understand; you never do unless you have lived it. But talking about it and sharing experiences can really help. We often speak to our boys about their autism, to help them understand each other, and how they should be proud of who they are, and proud that they are autistic. But Christmas can be an incredibly tough time for them. They both love the idea of Christmas. But in reality, the stress can be too overwhelming for them with all the changes. It’s more about getting through it, rather than taking the time to actually enjoy it. SCHOOL LIFE Samuel and Thomas often suffer from social anxiety at school; struggling with close contact and finding small talk exceptionally difficult. They like their routines, so the transition from Year 1 to Year 2 was terrible with all the sudden changes. The pastoral manager and the school SENCO do all they can though to prepare the
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boys for any changes involved. This past year, the school had arranged for classes to have a phased period where their existing teacher and new teacher do some dual teaching for a couple of months. This really helped Samuel and Thomas understand the changes that were happening, at a gradual pace that worked for them. But Christmas can still be a difficult time for them at school. Having to get involved in school nativities, and the changes to lesson activities – what many children enjoy about school at Christmas – can cause frequent meltdowns for Samuel and Thomas. The meltdowns are a result of them feeling like they have no control over what’s happening around them. They find everything too overwhelming, and don’t know how to respond to any of it. DECORATING THE HOUSE Every year we make sure that the boys are fully involved in choosing and putting up decorations. This gives them that sense of control, which is vital. If they didn’t get a choice, they would find the change and decorations too much to cope with, which could cause both of them to have high anxiety. They also get too anxious at the thought of Santa coming into their rooms on Christmas Eve, so we don’t hang stockings in there anymore.
“Every year we make sure that the boys are fully involved in choosing and putting up decorations�
FEATURE • MY STORY
Helen says Christmas gets easier every year
CHRISTMAS DINNER Both boys are extremely sensory to food, so we don’t have a traditional Christmas dinner. Last year we all had chicken nuggets and chips, but it at least meant that we could all sit at the table together and have a family meal, which to me, is really important. We encourage new food, but we don’t always win. Sometimes they’ll just have a plate with brown sauce on it which they like to lick off, because it feels good for them. Society gives us fixed views but autistic people break down the boundaries – why can’t you eat a jacket potato for breakfast? FAMILY AND FRIENDS We are unable to visit family and friends much around Christmas. It’s really difficult trying to explain to people why we can’t visit, or have many visitors, and why we make the changes that we do. Before we had our boys, we would spend time with both our families having traditional Christmas food. We were able to relax more. As lovely as
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“Last year we all had chicken nuggets and chips. It meant we could all sit at the table together.” that was, it doesn’t compare to the look on the boys’ faces when they come downstairs in the morning to see the gifts Santa has left. THIS CHRISTMAS Although Christmas can be a difficult time for our family, it does get easier year by year. When Samuel was first diagnosed, we came across The National Autistic Society. We’ve learned new ways to communicate with our boys, and find the website invaluable. This Christmas will be similar to previous years. We’ll talk to our boys
about the changes that will happen in school again, to help prepare them, and we’ll get them involved in decorating the house as always. We’ll probably even have chicken nuggets and chips again for our Christmas dinner. We had lots of Christmas crackers last year which they loved – we spent most of the day reading out the jokes – so we’ll do that again this year if they want to. Our Christmas may not ever be ‘traditional’, but it will always be special to us. ●
Find out more:
• Visit www.autism.org.uk/ Christmas for more top tips from Your Autism Magazine readers to help you get ready for Christmas. • The Boon family feature in our upcoming Christmas appeal. You can find out more and donate at www.autism.org.uk/appeal. • Read our guidance on talking to your children about their autism diagnosis at www.autism.org.uk/ diagnosedchild.
ADVICE • CARERS
Looking after yourself as a carer Rose has been caring for her adult son, Freddy, for 26 years. She shares her advice for other carers. Rose
I
wanted to write something about my experiences of being an older carer, caring at home for my adult son, Freddy, who is autistic and has learning disabilities. The role of carers has been in the media lately, largely due to a lack of government funding, and the increasing stress this puts on carers, with many of them receiving no help at all. The needs of autistic adults are not always flagged up as a priority, so this is a voice for all those disabled adults and their carers, many of whom struggle at home unheard.
Negotiate for respite care Many of us caring for an adult child on the autism spectrum at home are in our 60s, 70s and even 80s. A time when we should be putting our feet up and enjoying free time for pursuits that usually comes to parents once their children have grown up and left home. For most older carers, such free time is limited and so respite care, agreed and funded by social services, is really worth negotiating for. Three weeks a year is often agreed and a
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carer can stay in your home. Respite care enables you to have a break from your caring role, and to recharge. This makes a difference to so many families, as does the provision of carers to sit in for an evening, allowing parents to go out.
Get together with other carers Getting together with other families in the same situation is what gets us all through. Knowing there are always friends there to listen and understand makes such a difference. We share the difficult times, but also the funny times and the ‘feeling proud’ times. It is as though as mothers, we have an unspoken understanding of one another, in a world which only we are privy to. We have shared the same journey since our children were young. Our children don’t live in a world of high expectations of exam results and career choices, but a world where the smallest of achievements brings pride.
Share the knowledge Talking to other carers who have been
through similar life experiences cannot be stressed enough. The minefield that is social services; care plans; special education; post education and transition to adult social services is easier to negotiate, understand and benefit from if carers share their knowledge and experiences. Information on further education and employment, independence training, housing, daytime activities and benefits is all available, but in my experience, none of these services will appear on your doorstep! It is up to us to negotiate our way through what is available and what is good and what is not. No one understands carers and their needs better than other carers!
Plan for the future Now I’m in my sixties, thinking about Freddy’s future seems more important than ever. I get more easily tired now and I feel he should really be out with his mates, not spending all his spare time with his mother. I am aware how much he depends on me for companionship and
Rose with her son Freddy
Are you a carer too? • Find out about getting
a carer’s assessment at www.autism.org.uk/ supportforcarers • Visit Carers UK at www.carersuk.org
for more information and advice. • Find your local National Autistic Society Centre at www.autism.org.uk/ services • If you are planning for
the future, read our information on wills and legacies at www.autism. org.uk/legacies
“Talking to other carers who have been through similar life experiences cannot be stressed enough.”
entertainment. Many of my friends find themselves in the same position, and we all realise that our adult children need to be prized away from us at some point, for them to lead more independent lives. This ultimately means them moving into supported living accommodation. When we suggested to Freddy he might like to live away from home with friends, he said that would be fine, but he would come home in the evenings! Caring for Freddy has made me aware of what it can be like for
an autistic adult on a day-to-day basis. I can only imagine it is a very confusing world to be a part of, when you feel like everyone around you is speaking a foreign language. The stability and structure he gets from attending his day centre run by The National Autistic Society, where staff understand autism and provide him with a sense of belonging and reassurance, enables him to continue on the road to independence.
Keep yourself healthy Finally, keeping ourselves well both
physically and mentally is vital for us to continue in our role as carers, so it makes sense to eat well and take exercise. Some local authorities will pay for yoga classes or similar realising that this sort of help, helps them too in the long run. I feel so privileged to have such a polite, entertaining, wonderful young man as Freddy who brings us so much joy and pleasure despite the difficult times. I have learned so much from him, and am very proud of him. I can’t imagine having a more rewarding son.
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ADVICE • MENTAL HEALTH
How to access mental health support If you are on the autism spectrum and have a mental health issue, where should you turn to first? Read our essential guide for children and adults. BY LUCY ARMSTRONG, LEAD HELPLINE ADVISOR, T H E N AT I O N A L A U T I S T I C S O C I E T Y
O
ver recent years there has been a huge increase in the awareness of both autism and mental health conditions but it seems that access to services has not improved as a result. We are increasingly hearing from individuals who are unable to access appropriate treatment for mental health conditions. Although autism is not a mental health condition itself, it is estimated that up to 70 per cent of autistic people will experience mental health difficulties like anxiety or depression at some stage in their lives. Despite this, many people have been told that “autism is not a mental health problem” or “we don’t deal with autism” before being turned away from vital services.
Children and young people How do I get help for my child’s mental health difficulties?
Your first port of call to access help for your child should be to visit their GP and explain the behaviours and difficulties which are concerning you. In older children, the doctor may wish to speak with the child/young person alone so it is important to bring them along to appointments, where possible. You should also speak to your child’s school about any concerns you have. Schools are not legally obligated to provide counselling, but they may have some form of mental health support available. If a child suffers from a long-term mental health condition, it may also be classed as an impairment under the Equality Act 2010, meaning the school would have to make reasonable adjustments in accordance with this. Therefore, it is possible that provision can be put in place via Special Educational Needs (SEN) support or an Education, Health and Care plan (EHCP). Both the GP and school are able
GPs and schools can make referrals to Child and Adolescent Mental Health Teams (CAMHS) 36
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NICE recommends Cognitive Behavioural Therapy (CBT) for autistic children experiencing anxiety
to make referrals to Child and Adolescent Mental Health Teams, often they are known as ‘CAMHS’, but names for these teams do vary regionally. Referrals may be accepted or rejected based on local service criteria. Does it make a difference if my child’s mental health difficulties are related to autism? The NICE best practice guidelines that NHS doctors should follow when supporting young people on the autism spectrum state that where there are coexisting conditions, treatment should be offered in line with the corresponding guidelines for that condition. For autistic children experiencing anxiety, NICE recommends Cognitive Behavioural Therapy (CBT) that is adapted to meet the child’s needs. This could include things such as
or clinical team you are referred to by your GP. You can search for local mental health support services on the NHS Choices website to give you an idea of what is available. The GP did not take me seriously, what can I do now? Unfortunately, it is common for us to hear of people experiencing difficulties when trying to get support for their mental health. If your GP refuses to make a referral, doesn’t offer support, or you are told that ‘it’s just part of your autism’, you may be able to make a complaint about the treatment you have received. The complaints process is different depending on which country in the United Kingdom you live in. The following organisations can assist with complaints against the NHS: • England: Patient Advice and Liaison
Service (PALS) • Scotland: Patient Advice and
Support Service (PASS) • Northern Ireland: Patient and
Client Council • Wales: Community Health Council
including more visual supports, increasing the number of breaks or incorporating a child’s special interest so the therapy is relatable.
Adults How do I get help for my mental health issues? There are many different types of mental health support available for free on the NHS. You will usually need a referral from your GP to be able to access these. If you would prefer not to speak to your GP about difficulties you are facing, in England, many ‘Improving Access to Psychological Therapies’ (IAPT) services allow you to make a selfreferral, either online or by contacting your local service directly. Details of your local service can be found on the NHS Choices website. If you are suffering from stress
and anxiety due to issues in the workplace, see if your organisation has access to an Occupational Health team and ask what support they may be able to offer. Remember, autism spectrum and mental health conditions can both be classed as impairments under the Equality Act, so you may be entitled to request reasonable adjustments at work to support you with any difficulties you are having.
It is also possible to report your concerns over practices to the General Medical Council, who regulate registered doctors and help to protect patients. You can also report issues to the Care Quality Commission or the regulatory body for the NHS in your area, such as the Clinical Commissioning Group (CCG) or Local Health Board in Wales.
Who will I be seen by? Your needs and the condition you present to the GP with will influence where you are referred to and what treatment you are offered. Services available do vary depending on the area you live in. If it is the first time you are asking for support for a particular condition such as depression or anxiety, you have the legal right to choose which provider
It’s your legal right to choose which clinical team to be referred to
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The Autism Act states that the NHS should provide autism awareness training for all staff
Should I/my child be able to access autism-specific mental health support? There is currently no legislation that means an individual must receive autism specific support. However, the Autism Act clearly states that local authorities and the NHS should provide autism awareness training for all staff and they must provide specialist autism training for key staff, such as GPs. Further to this, the NICE guidelines for adults say that staff should consider seeking advice from a specialist autism team regarding delivering and adapting these interventions for people on the autism spectrum. What other help can I access? Some people may prefer to manage certain mental health conditions without the input of their GP and pay privately for counselling, CBT or other therapies. There are also lots of self-help resources available online, such as mindfulness tools and mood assessment quizzes, which can help
“Counsellors experienced in working with autistic people are listed in our Autism Services Directory” individuals to monitor their mood and anxiety levels. Increasingly, mobile applications are becoming available which offer instant access to support. One of these is Brain in Hand, which has a facilitation service offered by The National Autistic Society. The app aims to help users manage anxieties and feel supported, and encourage independence by reminding people of day-to-day tasks and activities. Details of support groups and counsellors with experience of working with autistic people can
be found via our Autism Services Directory: www.autism.org.uk/ directory. If you are experiencing suicidal thoughts or acute mental health difficulties, you should call 999 or 111 to access immediate help and support. If you are worried about your mental state, it would be best to speak to a qualified medical professional.
Useful contacts
• The Samaritans can provide confidential emotional support 24/7 to those experiencing despair, distress or suicidal feelings. The quickest way to contact them and get a response is by phone on 116 123 (this number is free to call). • Contact Mind www.mind.org.uk, for more information on all types of mental health problems. • Young Minds www.youngminds. org.uk provide advice on mental health for young people.
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Spotlight on Brain in Hand
The app’s traffic light system helps monitor anxiety levels and lets you request help from The National Autistic Society support team
How can our charity help you? Brain in Hand is an app to help you reduce anxiety and achieve your goals.
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hat is Brain in Hand? The National Autistic Society has selected Brain in Hand as its mobile solution for people who need help to achieve greater independence. Brain in Hand gives you access to personalised support from an app on your phone. It’s packed with features to help you remember activities, reduce anxiety and feel safe. It’s accompanied by remote support from The National Autistic Society to guide you at times when you need extra help. How are people using it? People use Brain in Hand to achieve life-changing goals. We hear from users about travelling on public transport for the first time, starting and staying in work, successfully transitioning to college or university, or everyday tasks like completing their morning routine on their own. Brain in Hand helps you to better cope with day-to-day issues − the things you know can trigger problems such as noise or the close proximity of people, to the
unexpected, such as a bus arriving late, or a shop being closed. Rosie King, who presented the BBC’s My autism and me, uses Brain in Hand at university. She says, “It’s as though I have that older Rosie in my pocket and I can call her up for advice whether I’m just a little uneasy or having a full blown panic attack.” How does it work? Brain in Hand features a diary, notes and reminders to ensure you never forget what’s important in your day; easy access to your best coping strategies to help reduce anxieties and a traffic light system to help you to monitor your mood and request additional help from The National Autistic Society if needed. How can I get it? You can buy Brain in Hand from £45 per month. University students can fund Brain in Hand through their Disabled Students Allowance, while schools can support students to fund the app via Education Health and Care plans, or it can be included in your personal budget support plan
from social services. It’s also available through Access to Work for those starting work. The Brain in Hand team will help identify the best way for you to get Brain in Hand. Who developed the app? The concept came from Dr Tony Brown, Clinical Director of the Autism Diagnostic Research Centre and one of their founder Trustees, Andrew Stamp, whose son is autistic. Andrew and Tony spotted the need to provide assistance to people both within a supported environment and crucially to help them on their journey to greater independence. ●
“Of people using Brain in Hand, 88% can cope better with problems and feel more confident.”
Find out more
See Rosie King using Brain in Hand at www.braininhand.co.uk. Call Brain in Hand on 01392 247909 or email NAS@braininhand.co.uk.
YOUR AUTISM MAGAZINE
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RESOURCES
Justice for Laughing Boy: Connor Sparrowhawk – A Death by Indifference AUTHOR: Sara Ryan PUBLISHER: Jessica Kingsley Publishing PRICE: £12.99 VERDICT: A tragic and powerful account of a mother seeking justice for her son THIS IS A HARD-HITTING account from the mother of Connor Sparrowhawk. Nicknamed Laughing Boy, Connor was a young autistic man who tragically died following an epileptic seizure while under the care of Southern Health NHS Foundation Trust in 2013. Sara Ryan takes us through Connor’s childhood – his love of buses, making up stories, the family’s trips to London, and their holidays. But as Connor got older and was heading towards adulthood, things became harder. Sara describes “the lack of an imagined future” for Connor from services. She also started blogging about her experiences. Services weren’t available to help Connor think about and achieve what he wanted from life. He also became depressed. The family was in crisis and Connor was admitted into an assessment and treatment unit (ATU – an inpatient mental health unit) to get help. But his needs were not met and his epilepsy wasn’t properly picked up, even though a seizure was flagged to staff in the ATU. Connor died after he had another seizure in the bath. There were no staff supervising him at the time. Justice for Laughing Boy follows Connor’s family’s fight to get justice. Sara vividly describes going through the inquest, and the questions she had to face. It finally found that serious failings in the ATU contributed to Connor’s death. Alongside this, an investigation of the Trust found that reporting and investigating deaths of people who are autistic or have a learning disability was inadequate. This has led to a new national focus from the regulator, the
Aspertools AUTHOR: Harold Reitman, with Pati Fizzano and Rebecca Reitman PUBLISHER: Souvenir Press PRICE: around £10 VERDICT: A highly practical guide to make daily life less frustrating and more productive ASPERTOOLS IS WRITTEN as a practical guide to all who are interested in maximising the positivity of neurodiversity. It contains a series of tips and useful advice for many situations that may prove tricky for some, from a father, a teacher and an adult with Asperger syndrome. There are plenty of examples given throughout the book and many tips contain a suggested action plan or vignettes from the ‘Aspie’s’ point of view. Its openly non-theoretical stance makes it extremely accessible to both parents and professionals and I would highly recommend it.
Care Quality Commission. The campaign also proposed a new law: the Justice for LB Bill. Though it won’t bring Connor back, and there is still a lot more change needed, the #JusticeforLB campaign has started to help “all the young dudes”, as Sara calls others in Connor’s situation. It’s impossible not to put yourself in Sara’s shoes as you read. The book describes any family’s absolute worst nightmare − that the support and services that are supposed to help your loved ones end up harming them. I hope this powerful and emotional story gets the recognition it deserves, and that it helps push campaigning for great care and good understanding to the next level.
Reviewed by Miriam Walker, Your Autism Magazine reader
Reviewed by Tim Nicholls, Policy Manager at The National Autistic Society YOUR AUTISM MAGAZINE
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RESOURCES
My book of feelings AUTHOR: Tracey Ross, illustrated by Rosy Salaman PUBLISHER: Jessica Kingsley Publishers PRICE: £10.99 VERDICT: For ages five+, this picture book will help children
understand and manage their feelings THIS IS A beautiful book, well written with clear short sentences and expressive drawings. It takes the child on a journey showing how to identify different feelings. Colours, actions, familiar objects and shapes are used effectively to help the child understand what can be a confusing world. Children on the autism spectrum as well as children with anger issues are enabled to understand themselves better. The child is then given safe choices in which to express difficult feelings. There is a useful interactive section at the end. I would highly recommend this book both for professionals, parents and foster carers. Reviewed by Anne Jordan, retired teacher and adult education tutor (special needs)
Our six favourite… autism-friendly Christmas events
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MAGICAL CHRISTMAS WONDERFUL-LAND Galbally Community Centre, Dungannon, Northern Ireland 25 Nov 2017, 3-5.30pm Our Dungannon Branch are hosting their very own ‘Magical Christmas WonderfulLand’ this year. Find out more at www. facebook.com/DungannonBranch.
BEAUTY AND THE BEAST Theatre Royal, Nottingham, 10 Jan 2018, 1.30pm and 7.15pm These autism-friendly performances will see sound levels reduced, no strobe lighting and quiet zones in the foyer to relax. Book at https://trch.co.uk/yourvisit/access/relaxed-performances/
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BRUNCH WITH FATHER CHRISTMAS Culzean Castle & Country Park, Maybole, South Ayrshire Saturday 23 Dec, 10.30am The National Trust for Scotland is organising a relaxed festive brunch for families with children on the autism spectrum. Email PCampbell@nts.org.uk.
POLAR EXPRESS MOVIE EXPERIENCE Various dates, Hull How about a Polar Express movie experience on 2 Dec, a children’s party on the 10th, trip to Gullivers, Warrington on 17 Dec, and two trips to see pantomimes? Just get in touch with our Hull and East Riding Branch at http://hulleastridingnas.weebly.com/
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SANTA’S COVE lntu Braehead, Glasgow 11 Nov - 24 Dec Interactive experience Santa’s Cove lands at intu Braehead on 11 November and will be holding autism-friendly sessions. Children can make reindeer food, test themselves on a naughty or nice machine, meet Mrs Claus, and, of course, Santa himself. Book at www.santascove.co.uk.
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PANTO, CHILDREN’S CHRISTMAS PARTY AND MORE! Various dates, Thurrock Our Thurrock Branch have organised a fantastic range of local events, including seeing a relaxed panto performance in Grays. Visit http://nasthurrock.btck. co.uk.
YOUR AUTISM MAGAZINE
45
LIAM’S STORY
Liam was Sodexo’s Young Chef of the Year
I’m a… chef! Liam Pope’s passion for cooking led him to a job as a chef at a prestigious boarding school. BY ALICE TODMAN
From cooking pot noodles to a career in the kitchen
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he autistic 21-year-old’s skills were nurtured at LVS Hassocks, an autism-specific school in Sussex. When Liam first joined the school, like many students, his repertoire didn’t stretch much further than the odd pot noodle. At the school’s official opening, celebrity chef Paul Rankin made an appearance. Taking part in a demonstration with the Northern Irish chef sparked Liam’s interest in a career in cooking. Now, he’s starting an exciting new job as Chef de Partie at Wycombe Abbey, one of the UK’s top boarding schools. Liam’s school supported him to develop his skills in the kitchen. He said, “As I became more and more interested, they allowed me to cook in the school kitchen with the catering team there to get used to the equipment and what to expect.” The school also set up valuable work experience for him with the Yummy Pub Co at The Wiremill pub in Surrey. He said that having the opportunity to cook for himself as a way of being independent triggered his interest in a career in food. LVS Hassocks Director of SEN, Sarah Sherwood, who has known Liam since he started at the school, said that it’s been amazing
to see him progress from just a “flicker of engagement” in cooking to where he is now. She said, “Liam is now an independent and ambitious young man enjoying life and his career.” Liam studied for food-related NVQs, and academic qualifications, alongside his work experience. He also enjoyed an apprenticeship at Sodexo in Ascot. This experience led to a permanent position, and Liam became national Young Chef of the Year at the Sodexo Salon Culinaire in 2015. Liam’s studies and work experience have taken him from the world of instant noodles to cooking at the Chelsea Flower Show with renowned chef Raymond Blanc. Congratulations to Liam for pursuing his interest and building the foundations of a fantastic career. ●
• If you’re autistic or know someone on the autism spectrum who is doing something amazing, we’d love to hear about it. Email yourautismmag@nas.org.uk.