Your Autism Magazine - Spring 2018 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 52 – NO 1 • SPRING 2018

Blue Badge proposals – Have your say

WORLD AUTISM AWARENESS WEEK OUR LATEST EDUCATION CAMPAIGN I’M A… WILDLIFE PHOTOGRAPHER

SENSORY ISSUES WITH EATING? Advice from our experts

Nice work

Finding a supported internship

Diagnosed at 45 Stu Ferrol tells his story

AUTISM ON TV

Positive portrayals Vs stereotypes

Spring 2018 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk

WRITERS Jessica Phillips 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 Spring Vol 52, No 1 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.

ortrayals of autistic characters on TV and film are increasing. In the last year, we’ve enjoyed The A Word and Atypical, and this month, we’ll see Dakota Fanning as an autistic woman in Please Stand By. Here at The National Autistic Society, we always aim to contribute to TV programmes about autism, to ensure that portrayals are positive and realistic, the type that increase awareness and understanding. On page 18, autistic film maker John Clark talks about autism on screen when he was growing up. What do you think about recent portrayals of autism? Let us know at YourAutismMag@nas.org.uk. There’s so much for you to get involved in over the next few months. Read all about the biggest week of the year, World Autism Awareness Week, on page 24. Meanwhile, we are already seeking families to talk about their Christmas experiences for our 2018 campaign. Interested? Get in touch at YourAutismMag@nas.org.uk. Suzanne Westbury EDITOR

Visit our Facebook page www.facebook.com/ NationalAutisticSociety

Contents 04 News 11 Research in focus 15 Readers to the rescue 16 How do I… find a supported internship 18 Feature: Autism on screen 22 Feature: our Held Back education campaign 24 Feature: World Autism Awareness Week 28 My story: Stu Ferrol on being diagnosed 32 Advice: yoga to reduce anxiety 36 Advice: challenges around eating 41 Spotlight on support: Autism Accreditation 43 Reviews 46 I’m a… wildlife photographer

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News

A round-up of the stories that affect you

Proposals to improve Blue Badge eligibility for autistic people – have your say! The Government has announced new proposals to make it easier for autistic people to qualify for a Blue Badge. This important announcement comes after several years of

SPRING 2018

our charity and others raising concerns that autistic people and their families are too often shut out from getting a Blue Badge enabling them to get out and live more independently. We need your help to make it happen! The current rules focus on a person’s physical ability to walk. But we know that, for example, many autistic people experience sensory overload from the environment around them on public transport, while others might not be aware of dangers on the road.

The proposed changes would mean that someone would qualify for a Blue Badge if they have difficulty when walking, if making a journey might put them at risk, or if they can’t make a journey without help. This change would include some autistic people and the Government’s aims for the changes are to improve support for people with hidden disabilities. But there is another step before this becomes the law. The Government has opened a consultation to ask for people’s views. We urge readers to take part and tell the Government that they should make these changes. We have already had a huge response to these proposals on our Facebook page. One parent wrote, “This would be so helpful, as just getting from A to B is a nightmare. My six year old has no idea on roads or in car parks.” Sarah Lambert, our Head of Policy, said, “This proposal could mean that many more autistic people will qualify for a Blue Badge, which can be a lifeline. “We hope the Government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.” Please take part in the consultation and let the Government see your support! Give your views at https://www.gov.uk/ government/consultations/bluebadge-disabled-parking-schemeeligibility-review before 18 March.

SPRING 2018 • NEWS

Autistic man and support worker at bus stop

VICTORY IN LEGAL CASE ON PERSONAL INDEPENDENCE PAYMENT (PIP) We have welcomed the ruling in a legal case that we have been involved in on PIP. In December, the courts ruled that the Government’s changes to eligibility for PIP made in March 2017 were discriminatory towards people who experienced psychological distress in planning and following a journey. We opposed the Government’s changes because we know that many autistic people can find it difficult to make unfamiliar journeys because it makes them very anxious. They might worry about the route, or unexpected changes. The changes meant this wouldn’t be taken into account in the PIP assessment and would mean autistic people would miss out. Sarah Lambert, our Head of Policy who gave evidence to the

TELL THE CQC ABOUT YOUR CARE Our partnership with the Care Quality Commission (CQC), the independent regulator of health and adult social care in England, continues this year. Please share your experiences of health and social care services at www.cqc.org. uk/share-your-experience.

court, said, “This ruling is hugely significant for many autistic adults, who struggle to make new and unfamiliar journeys.” In January, the Government announced that they wouldn’t be appealing this ruling, which means these rules on PIP have now been quashed. Moreover, the Government has said it will backdate claims for those who didn’t get PIP or got a lower level of PIP because of the rule change. This means that more autistic people should be eligible for PIP Mobility. We will report more in our next issue.

AUTISM PROFESSIONALS CONFERENCE With a strong focus on empowering autistic voice and choice, our Professionals Conference returns on 7-8 March in Harrogate. Learn strategies for improving how you deliver support, and network with other autism professionals. Book at www.autism.org.uk/profconf. ADDITIONAL LEARNING NEEDS PROVISION IN WALES The Additional Learning Needs and Educational Tribunal [Wales] Act will replace the current system of special educational needs support for Welsh pupils. Pupils receiving additional support will begin to transfer to statutory Individual Development Plans from 2020, beginning with those with a Statement of Special Educational Needs. www.autism.org.uk/additionallearning-needs.

Could your company partner with us? Through partnering with companies and their employees, we raise vital funds and awareness to support autistic people and their families. Why not find out what you can do in your workplace? Contact us on corporate.partnerships@nas.org.uk for more information on how you can get your company involved! Could we be your charity of the year?

YOUR AUTISM MAGAZINE

NEWS • SPRING 2018

Autistic women talk about their experiences of diagnosis

Art is on offer at our Centres

MORE FOR AUTISTIC ADULTS AT OUR CENTRES

New women and girls online training module Our new online training course on autistic women and girls launches in March. Thanks to the Pears Foundation, this interactive course is free for the first year. Aimed primarily at diagnosticians but open to everyone, the training aims to improve understanding of autistic female characteristics and enhance professionals’ confidence to diagnose women and girls successfully. In the course, five autistic women speak about seeking a diagnosis. Misconceptions around autism traits and how these relate to men and women are explored, and the course discusses why autism in women and girls may be missed. Dr Judith Gould and Professor Tony Attwood also talk about the need for adapting assessment tools for women and girls. Access the new module at www.autism.org.uk/womenonline.

January saw the launch of new support and extended opening hours at our Centres for autistic adults across the UK. New services include breakfast and supper clubs, evening groups, learning and weekend trips. Hannah Barnett, Director of Adult Services, said, “Our new Centres will ensure services are designed around the individual needs of the people

we support and that they decide which areas of their lives our support focuses on.” Find your local National Autistic Society Centre at www.autism.org.uk/services.

Autism-friendly shows near you 2017 was a bumper year for autism-friendly performances, and in 2018, The National Autistic Society will be working with even more theatres across the country. On 3 June, we will be transporting you back to the magical world of Disney’s The Lion King at the Lyceum Theatre in London. Want to be sure to hear about all of our upcoming shows? Sign up to our performances mailing list by going to autism.org.uk/shows. If you’ve seen an autism-friendly performance and would like to tell us what you thought, get in touch at YourAutismMag@nas.org.uk.

Abseil for autism! This spring, experience the once-in-a-lifetime thrill of abseiling, all in aid of our charity. Join us on 14 May to abseil down the UK’s highest freefall abseil, the ArcelorMittal Orbit in the Queen Elizabeth Olympic Park, Stratford. Sign up now at www.autism.org.uk/abseil. For more information, call 0808 800 1050 or email events@nas.org.uk.

Fancy a challenge in 2018? SPRING 2018

NEWS • SPRING 2018

Lee’s fundraising song was inspired by his little brother, Ryan Ignite the Night in London, Manchester, Bristol and Glasgow

DIARY DATES We’ve got a busy few months coming up, so make a note of our fantastic upcoming events: 7-8 MARCH Autism Professionals Conference 17 MARCH Night Walks for Autism, London, Manchester, Bristol and Glasgow 25 MARCH London Landmarks Half Marathon 26 MARCH – 2 APRIL World Autism Awareness Week, including the launch of Year 3 of our Too Much Information campaign 28-29 MARCH Understanding the workplace for autistic employees, London 15 APRIL Brighton Marathon

Going for a song Fundraising continues apace for our first Autism Centre in Belfast. Our supporter, Lee Howell, has even released a song, Smoke filled room, with all proceeds going to the Centre. Lee said, “I’m 22 years old from Ballyclare, Co. Antrim. I started writing songs when I was in primary school and it’s always been my escape. The song itself started as a cover of Mako’s track of the same name but I completely changed the composition of the music and wrote my own lyrics to make it stand out. “My little brother Ryan is 11 years old and has Aspergers, he’s the reason I’ve decided to donate to the Centre. I just feel like because Aspergers isn’t a visible thing, a lot of people misunderstand him, when really he just can’t pick up on the social cues used by other people.

Hazel Griffiths, a member of our Harrogate Branch, has been recognised by the Royal College of Psychiatrists for campaigning for carers’ rights. Hazel is a retired nurse and a carer for her son Mark who is autistic. She was shortlisted for the Royal College’s Carer contributor of the year award, having been nominated by Tees, Esk and Wear Valleys NHS Foundation Trust. Hazel told us, “I am the North Yorkshire carer rep on

THE AUTISM SHOW 15-16 JUNE London 22-23 JUNE Birmingham 29-30 JUNE Manchester NAS members receive a discount on tickets to The Autism Show. Training/conferences Fundraising events The Autism Show

Tees, Esk and Wear Valleys’ triangle of care steering group. I am passionate in ensuring family carers are recognised and involved in a loved one’s care. Carers are often the only constant in the service user’s mental health care journey. They are there when crisis occurs, when the person is well and when that person needs support with day-to-day activities. If professionals can recognise the support that carers give and acknowledge them as a key partner, then service users will receive better support during their day-to-day life. Significantly, if carers are acknowledged and supported then they too are more likely to maintain or improve their own wellbeing.” “I am honoured, humbled and excited to have been nominated and for the recognition.” Find your local branch at www.autism.org.uk/branches.

Harrogate Branch member Hazel has promoted carers’ rights SPRING 2018

Find out more about our new centre at www.autism.org.uk/ nicentre.

CARERS’ CHAMPION HONOURED

28 MAY London 10,000

“The track is already available on Google Play, iTunes and Amazon for 99p whilst also being on all streaming services. I get 100% of the money from each download and am also paid per stream. All of this will be donated to The National Autistic Society Autism Centre.”

Research in focus

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

Experiences of taking children on the autism spectrum to the dentist Parents want dentists to have a better understanding of autism, according to new research from Plymouth University. The research was led by Nicole Thomas, a dental hygienist and mum to Edward, who is autistic. Seventeen parents of children on the autism spectrum were interviewed about their experiences of dental check-ups. The research found that five factors needed to be present to increase the chance of dental check-up success. These were the flexibility of the dental team, confidence of the parent/ carer, continuation of service outside of the dental examination and clear referral pathways to specialist dental services, all linked together with clear communication. Parent confidence was undermined when parents assumed the dentist’s education had provided enough training to deal with children with additional needs. Parents consequently didn’t feel they could question the dentist when issues arose. Some parents, despite confidently advocating for their children, experienced reluctance from the dental team to make minor changes. Therefore, despite their best efforts, dental visits were largely unsuccessful. Dental teams that took time to respond to the needs of the children that were expressed by parents had more positive experiences. Check-ups were also good when the whole dental team got involved in

Good communication and continuity of care are vital

the care of the child. Helpful strategies included providing information on what to expect before a check-up and making thorough notes so parents did not have to repeat themselves at every appointment. This continuity before and after a check-up was valued by participating families. Instead of having an in-depth knowledge of autism, parents wanted dental teams to have a better understanding of autism, especially the impact a dental visit can have on them as a family, from the amount of preparation it takes, to the fallout should a dental visit result in a meltdown. Nicole said, “The parents that took part in the study had a variety of good and bad experiences but on the whole, were desperate for change in the way their children were currently treated by many dental establishments. However, this study shows that clear and open

Research Lead Nicole

communication on both sides creates a collaborative partnership that works in the best interest of all. In the UK, it is thought 90% of those that access special care dental services should be able to access their local high street dentist − this includes children on the autism spectrum. We hope that by promoting the small changes outlined by this study, it will have a big impact on a large number of people.” Read our advice on visiting the dentist at www.autism.org.uk/dentist. Read the full paper published in the International Journal of Paediatric Dentistry at http://rdcu.be/x1WG. ●

YOUR AUTISM MAGAZINE

RESEARCH • FOCUS The concept of ‘treating autism’ was seen as highly problematic by the research participants

Information, advocacy and signposting as a ‘low-level’ support for autistic adults Support such as advocacy and providing information is championed to support autistic adults who do not have accompanying learning disabilities. Yet research in this area is sparse. A paper published in the Journal of Autism and Developmental Disorders considered the effectiveness of the Leeds Autism Advocacy, Information and Mentoring service (AIM), a service for autistic adults with little or no funded care or support. The Leeds service offers two weekly drop-in ‘autism hubs’, providing access to a range of information, café areas, quiet areas, computer rooms, and meeting rooms for adults and their families/ carers. The drop-in hubs also host external support services, including advisers from the Department of Work and Pensions, which users can access. Drop-in hub staff and mentors act

as advocates on behalf of service users. Information is provided about other services in the region. The research found that engaging with the service led to positive outcomes for autistic adults in employability, education, volunteering and access to support. Social isolation was reduced, while health and wellbeing and the ability to manage day-to-day improved. The researchers concluded that the service delivers an autism-friendly environment where autistic adults are empowered to take control of the support they need. Read more at bit.ly/Leedsadult-research.

The drop-in service improved health and wellbeing.

Selective patient and public involvement New research from the University of Exeter led by Ginny Russell has highlighted problems with how biomedical companies consult with the autistic community. The team scrutinised patient and public involvement (PPI) by a pan-European biomedical consortium working to develop drugs to treat autism. They examined how engagement occurred with members of the autism community. Two public events were conducted as part of the consortium’s PPI activities in 2014 and 2015. Sixty-six individuals submitted written comments on the consortium’s research after these events. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children on the spectrum. The events illustrated major differences between some autism community concerns and the biomedical research agenda. ‘Treating autism’ was seen as highly problematic by the majority of participants, but treating specific co-occurring problems was seen as helpful in some circumstances. However, the biomedical consortium selected PPI with a limited user viewpoint. This case illustrates what the researchers term ‘selective PPI’ where only a sympathetic and/or limited patient viewpoint is included in research. The findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue. Read more at: bit.ly/Ginny-Russell.

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.

YOUR AUTISM MAGAZINE

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

Twitter. This way you can find people who share your interests and are in similar situations to you, meaning that the social interactions you get are as positive as they can be − as depending on the people or the context, social interaction can actually be very negative. – Andy

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

0808 800 4104

The best method of social interaction will vary from person to person 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 AS AN OLDER, recently diagnosed Aspie, I’d strongly recommend that you do exactly what feels right for YOU, not what society expects you to do. I only wish I’d had the courage years ago to tell people that social interaction made me miserable rather than happy but instead, I spent

far too long trying to be ‘normal’ and failing. It’s only now, in my later years, that I’m really happy… alone. – Ann I WOULD GIVE it a try and see what happens! I think you are right in saying that social interaction is important. However, the extent of social interaction or the best method of interaction varies from person to person. Naoki Higashida, author of The Reason I Jump, says that he loves socialising with his sister. He doesn’t really interact with her, but likes to play independently in her room and appreciates her company. A lot of autistic people also use the internet as their main method of social interaction − such as using

Social interaction can be stressful and tiring for us. It is very sensible to seek isolation after work, when you are feeling overwhelmed. It is understandable that you need this alone time to recover. However it is good to build a network of support, so that you are not dependent on just one person. Jobs can be lost, relationships can fail, and no one lives forever. I would suggest seeking out additional social contacts, but do keep it manageable for you. For example, you probably don’t want to be meeting anyone after work. Maybe seek out a club or class that meets on your day off. – Laura

Help me next!

We recently had an Asperger’s syndrome diagnosis for my four year old. He starts school in September and I am wondering how and when we should tell him properly about his autism. Has anyone any suggestions they can share? - Anon via our online community SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of A practical guide to happiness in children and teens on the autism spectrum by Victoria Honeybourne.

Post your problems or answers on Facebook The National Autistic Society, 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.

*Laura wins a copy of Special needs and legal entitlement

YOUR AUTISM MAGAZINE

How do I...

find a supported internship?

Supported internships are post-16 study programmes offering work experience to young people with high support needs. Kathy Melling, Employment Lead for the Preparing for Adulthood programme, provides guidance on finding one.

upported internships are very different to other college courses. They are for young people who find it best to learn by doing. They are all about learning about work by being in work, and the aim is that the internship will turn into a paid job at the end. Supported internships are also about young people gaining qualifications that are important to employers and relate to particular jobs. Interns continue to learn English and Maths, but in terms of their application in the workplace. Most supported internships are full-time programmes, offering four-five days of unpaid work experience a week, and lasting one academic year. Supported internships really work. While there are no central statistics, it is estimated that more than 50% of those on supported internships continue into paid work.

Check your son or daughter’s eligibility

Supported internships are for high need learners. In England, they are for young people who have an education, health and care (EHC) plan. There are supported internships available through Project Search in Wales, but no similar provision at present in Scotland. They are for young people in their last year of education, up to age 25.

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Do some essential preparation

Before going on a supported internship, it’s really important that the young person has already had quite a lot of work experience in typical workplaces outside of their school or college. This will help them understand what being in work is like, what jobs they might like to do and what their skills are. This is vital, as the aim of the supported internship is to lead to the young person’s first paid job.

Abi’s story Abi Bell, 18, is on a supported internship at The Royal London Hospital called Project SEARCH. It’s a one year education to work programme that takes place entirely in the workplace. Abi’s Project SEARCH tutor and job coaches have supported her with the initial placement set up, and her work, social and interview skills. Abi said, “l’m in my second placement as a Ward Host on a dementia ward. This is a very busy role and needs a very caring and responsible person. Some of my tasks include communicating with elderly patients with dementia, serving breakfast, lunch and dinner, tea and coffee and taking patients’ orders. I love my role as I’ve always wanted to help and take care of people and I get treated the same as an employee. I am hoping to get full-time employment very soon! I also want to help young people like myself in the future to get a job.” Abi is a Ward Host

HOW DO I? • FEATURE

Check your council’s local offer for availability

Your first port of call to find a supported internship is your local authority’s local offer, available online. The local offer is a guide to services in your area for children and young people with special educational needs aged from birth to 25. At school, young people and their parents should also be getting careers guidance, and the careers advisor should know the availability of supported internships in your local area. Parents can also find out about them through their local parent-carer forum. Supported internships may be offered by a school, college, training provider or by a community organisation such as Catch-22. Availability does vary across the UK. A lot of hospitals and NHS employers offer supported internships, as well as large employers such as National Grid and Marriott Hotels.

Ask for job coach support

It’s really important that an autistic young person on a supported internship has a job coach. As well as supporting the young person and asking for any adjustments they need, job coaches are there to help the employer understand the needs of autistic young people and how best to assist and line manage them. For instance, if the young person does not want to do a traditional interview, their job coach could advocate for an interview where they demonstrate their skills on the job, rather than talking about them. A job coach can be from the education provider, employer or be independent.

Young people may be eligible for funding during their internship

Access funding

The availability of funding for travel and living costs while on the supported internship varies. Young people may, depending on their circumstances, be able to apply for a travel card which allows them free travel. Again, that varies between local authorities. There are bursaries available which are at the discretion of the local education provider. Employers or education providers can apply for Access to Work funding from the Department of Work and Pensions to pay for job coaches or any specialist equipment required. Was this advice helpful? Let us know at YourAutismMag@nas.org.uk.

Useful resources

Job coaches can advise the employer on how to support the young person

• The Preparing for Adulthood website at www.preparingforadulthood.org.uk offers a wealth of information on supported internships, including an accessible guide to supported internships for learners, and a webinar. • Read our guidance on interacting and coping at work at www.autism.org.uk/about/adult-life/work.

YOUR AUTISM MAGAZINE

FEATURE • OPINION

Autism on

screen

With programmes such as Atypical and The A Word, are we finally seeing more realistic portrayals of autism on TV and film? Or do we still have some way to go? Autistic film maker, John Clark, and writer, Leo Capella, give their views. BY JOHN CLARK

efore the television sitcom The Big Bang Theory, the 1988 Oscar-winning film Rain Man was the shorthand, go-to term of reference whenever you mentioned autism to the commonly uninformed. I first watched Rain Man aged 10, as it was the most accessible fictional portrayal of autism at the time. Because of this, it did resonate with me at times. Especially how the character of Raymond would have meltdowns and is adamant about travelling certain routes on certain

types of transport, Qantas Airlines in his case; my mum’s car, in mine. But as I navigated adolescence, it seemed to be the only popular representation of autism on screen. If I would have ever mentioned the term Asperger syndrome to my school peers (who didn’t like me anyway), the retort would have simply been “eh?”. Further add the words autism spectrum, and the first of those two words would have immediately attracted a barrage of questions that referred back to Rain Man.

The frustration around the lack of understanding that the film inadvertently created became a little unbearable. So, most of the time, I simply attempted to ‘fit in’ and sweep my Asperger syndrome under the carpet. However, as adolescence became a distant and embarrassing memory, a sudden resurgence of characters baring autistic traits once again appeared. Some good, some bad. It is because of this resurgence (amongst other reasons), that I have felt able to open up about my Asperger’s to friends, peers and the general public in my creative work. A RECURRING PATTERN In my experience, if a film or TV show leans towards dramatic elements, then the difficulties of the autistic character are highlighted and amplified. We see glimpses of certain events such as difficulties negotiating a simple situation. These are there to move the plot of the whole story along and build a connection with the character. Some comedic elements are added to prevent melodrama.

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OPINION • FEATURE

American drama Atypical

“It is because of this resurgence of autistic characters that I have felt able to open up about my Asperger’s to friends, peers and the general public in my creative work.” If the film or show leans towards comedic elements, then the autistic character’s ‘traits’ that often appear quirky or ‘cringe-worthy’ are amplified or reduced in a balancing act for humorous and/or entertaining effect. I’m thinking, of course, of Sheldon Cooper from The Big Bang Theory, though his character was not written to be autistic. This is perhaps, because – as someone on the autism spectrum who has studied and undertaken the writing and filmmaking process – a writer ideally needs to abide by certain guidelines within plotting and pacing the script’s story. In a way, you have to ‘shape’ the autistic character into a glorified snapshot. You need to capture the character’s basic ideals to fit the framework of the narrative. This is why an autistic character can often appear as if their autism

dictates their every thought, dialogue and action within the story. Even with non-fictional films or television, you are still only getting a snapshot of an autistic person’s life, as demonstrated in documentaries such as Life, Animated (2016). And the common phrase “When you meet one person with autism, you’ve met one person with autism” springs to mind. Which is why it can be difficult for creative talent to paint an accurate picture of autism, as director of X+Y (2015) Morgan Matthews once stated: “When you’re making a single film, there are only so many representations that you can cover.” FIRST HAND FILM-MAKING With my two introspective documentaries, I hoped to bring my genuine story of living with Asperger

syndrome and negotiating the adult world as I see it to a wide audience. Another individual ‘snapshot’, yes, but one coming first-hand. It is worth noting the majority of work that deals with autism comes from consultations and second-hand experience. From these documentaries, I plan to write a feature length story loosely based on mine and my brother’s experiences of being autistic adults in society. I want to challenge the ‘only boys have autism’ myth and cover aspects of ‘real life’ often briefly skimmed over or heavily dramatised. My style of filmmaking aspires to be within social realism, as I find my view of people and their place in societal circumstances a fascinating subject. Portrayals of autism in films and television may still provoke criticisms for their snapshots. But if autistic talent within filmmaking and television continues to share and collaborate (so voices like theirs and mine can be heard loud and proud); we can continue to repair the damage done by the likes of Rain Man and The Big Bang Theory.

YOUR AUTISM MAGAZINE

FEATURE • OPINION

Leo’s take on The A Word Autistic advocate and writer, Leo Capella, reviews The A Word, and shares his perspective on autism in television. When it comes to depicting disabilities on television and film, a lot of disability activists and self-advocates tend to be naturally rather wary. Granted there are quite a few good films and programmes out there: The IT Crowd, Life, Animated, The Autistic Gardener... But there’s also a lot that trigger the inner Black Mamba (or Great White Shark) in activists, for example The Undateables, which is loved and loathed by disabled people, as well as Atypical which also reportedly gets cheers and hisses in equal measure. So, last October, I went to a workshop with Peter Bowker who wrote The A Word and watched a screening of the first episode of series two. Initially I winced at the premise of a child on the spectrum being used as a sort of lens or focus point to view a family with. It seemed close to The Curious Incident of the Dog in the Night Time which gives its non-autistic characters somewhat more depth than its protagonist, which you’d like to think we’ve moved on from. However, the portrayal of a family who can’t communicate around a person that has communication difficulties made some sense. In the first episode, I preferred the family drama over the scenes with Joe (no offence to Max Vento, who does a decent job playing him). In fact it was interesting seeing those little discussions that the parents

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had, as I wondered how many of those discussions my own parents had about me. As for Joe’s scenes, I identified with his own initial reaction but thought there were more parallels with my own experiences as a teenager just as much as there were as a kid. Otherwise, I thought the show was really funny, with Maurice played by Christopher Ecclestone being a case in point. In the Q and A session afterwards, it was good to know that not only had Peter Bowker worked with autistic children, Greg McHugh who plays Eddie Scott had also worked with autistic kids before acting in The A Word. So the background amongst the actors was there and they were willing to learn about the area they had come into. Others like Lee Ingleby approached it as an actor but increased their own knowledge and felt honoured to be part of a show that opened up a conversation. Overall, I left impressed by Peter Bowker and everyone else working on The A Word, as well as the programme itself. ●

Find out more

Series one and two attracted five star reviews

“The A Word’s writer, Peter Bowker, had worked with autistic children.”

• What’s your favourite TV programme or film with an autistic character? Let us know at YourAutismMag@nas.org.uk. • John Clark was a finalist in our Autism Uncut media awards last year. Read about the awards at www.autism.org.uk/uncut. • See John’s film I have Asperger syndrome – and what of it? at www.autism.org.uk/get-involved/uncut/shortlist/aspiring. • Find out more about our charity’s involvement in The A Word at www.autism.org.uk/A-Word.

FEATURE • CAMPAIGNING

Autism and

education Too many children are held back from achieving their potential at school, according to our new education report.

he National Autistic Society and the All Party Parliamentary Group on Autism (APPGA – a cross-party group of MPs and Lords who raise autism issues in Parliament) are calling for a new national autism education strategy to improve the education of children and young people on the autism spectrum in England. Alongside this, we have launched our new campaign, Held Back, asking you to sign our open letter to the Government to make this happen. In November 2017, we published our latest education report. It is based on the findings of an inquiry by the APPGA – supported by

Read the full report at www.autism.org.uk/heldback.

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our charity – into how the current education system works for autistic children and young people in England. This inquiry, chaired by Maria Caulfield MP and Huw Merriman MP, was carried out in response to parents raising concerns about their children’s education with their local MPs. “I don’t want to fight, but I feel like I have to.” (Parent) More than 3,000 parents, carers, young people and teachers shared their experiences with us through the inquiry. We found that too many children on the autism spectrum are not getting the support they need and are held back from achieving their potential. • More than 50% of children and young people on the autism spectrum who responded to our survey say that they are not happy at school. • Fewer than 50% of teachers who responded say they are confident about supporting a child on the autism spectrum. • 50% of parents said they waited more than a year for the right support to be put in place at school for their child. • 70% of parents who responded to our survey said the main thing that would improve school for their child is having a teacher who understands autism. • 42% of children are refused an

education, health and care assessment by their local council the first time this is requested. These findings come three years after the Government introduced a new special educational needs and disability (SEND) system in England, promising to make it easier for children and families to get support. “We are stuck in a system that wants the child to fail before help is offered.” (Parent) This parent’s experience is, frustratingly, all too common. Too often, parents told us, their autistic children have to fail at school before the support they need is put in place. The report concludes that the reforms to the SEND system have not been introduced properly, and that all schools and local councils need to start following the SEND Code of Practice without delay. “Autistic pupils are probably the SEN group I need the most guidance with and have received the least guidance on.” (A teacher) Schools and local councils don’t understand how to help autistic children learn. They aren’t providing vital things like help with making friends and working with classmates, teaching assistants, or a classroom free from bright lights and overwhelming noise.

“We are stuck in a system that wants the child to fail before help is offered.” (Parent)

FEATURE • CAMPAIGNING

“More than 50% of children on the autism spectrum told us they are not happy at school.” What we are asking for Our Held Back campaign is calling on the Government to develop a national strategy for autism and education by the end of 2019 that includes: • training for school staff • reasonable adjustments for pupils on the autism spectrum in schools • provision of a specialist curriculum for all pupils who need one • measures to reduce bullying and promote inclusion. We are also recommending that: • Local authorities should collect data on the number of children and young people in their area who are on the autism spectrum, and on the profile of their needs. They should use this data to plan and commission the school places and other services they will need. The Government has said they will consider our report’s recommendations carefully. Now is the time to put some pressure on them to make sure no children are held back from meeting their potential because they’re autistic. ●

Find out more:

• You can support our Held Back campaign, with Ambitious about Autism, by signing our open letter to the Education Secretary, Damian Hinds, at www.autism.org.uk/ heldback. • Read our advice on getting more support at school at www.autism. org.uk/education.

YOUR AUTISM MAGAZINE

FEATURE • FUNDRAISING

New for World Autism Awareness Week!

Read all about the making of our new stop motion film and how you can get involved in World Autism Awareness Week 2018.

orld Autism Awareness Week 2018 brings an exciting change to an already jam-packed week of fundraising – this year we have the fantastic support of beloved toymaker PLAYMOBIL. Our new film to launch the week shows you just what you can do − and how even the smallest UK towns will be taking part! Working closely with Flycheese Studio we have produced an animated film that features PLAYMOBIL, as well as the real people behind each of the mini characters. We visited Paul Brown, founder of Flycheese Studio, to speak about their part in making the film. What is Flycheese Studio? We’re an animation studio and social enterprise, based in Sheffield. We work with autistic people and people with learning or physical disabilities to teach animation and other digital art forms. I wanted to give opportunities to people who might find it difficult in the mainstream digital art environment and show that it’s accessible to everyone.

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Our new film is voiced by Lee Ingleby, who plays Joe’s dad in The A Word

Through experience gained on supporting elements of the project, some of the autistic students will now be working on their first commissioned animation films. What has the studio been doing for World Autism Awareness Week? We’ve produced a stop motion animation of a PLAYMOBIL town and characters, each doing their bit for World Autism Awareness Week. Some of our autistic students, with an interest in stop motion, have been

brought in to work on the animation for this project. What have the students gained from this project? Through experience gained on supporting elements of the project, some of the autistic students will

FUNDRAISING • FEATURE

Kenny Mpanga, who is 18 and autistic, is one of our stars and he appears in the film together with his PLAYMOBIL character, ‘Mini Kenny’

now be working on their first commissioned animation films.

our students into the process in a way that others don’t.

Why has this particular project been so important to you? At FlyCheese Studio, we aren’t interested in our students coming in to ‘do art’, but to become credible artists themselves who get their own work published - it’s the most important part of what we do. Stop motion as an art form, because of the repetition and the fact that you create and control your own world, seems to have had a unique way of locking

How has the experience been for you and the students? Working on World Autism Awareness Week has been fantastic. It’s a great partnership and we’re so proud of raising awareness around autism. We have autistic students who are aspiring animators, and this takes the training side of the studio up another level so people get experience working on a live project that’s going to be used professionally.

YOUR AUTISM MAGAZINE

FEATURE • FUNDRAISING

Take part in World Autism Awareness Week, 26 March – 2 April What is World Autism Awareness Week? Each year, in the week leading up to World Autism Awareness Day, we encourage the public to take part in World Autism Awareness Week – a full seven days where schools, workplaces and individuals, their families and friends all over the UK take part in activities to raise money and awareness for The National Autistic Society. We’ve come a long way in raising autism awareness but there’s still more to be done until everyone understands autism. We need the public’s support to raise vital funds to continue running campaigns like Too Much Information, training and

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sharing knowledge with professionals working with autistic people, and so much more. How can I get involved? Sign up now and get your free fundraising guide, jam-packed full of fun ideas and activities to help you raise money your way. Hold a fundraising cake sale, quiz or onesie day – the choice is yours! How about taking part in a Night Walk for Autism? We’re running walks in London, Manchester, Bristol and Glasgow on Saturday 17 March. Or you can join our brand new virtual event, 7k for 700k. Run it, bike it, swim or hike it! For just £12,

you’ll receive a medal, fundraising and training tips and support on our social media groups. If you want to get your school involved, download our schools fundraising pack. When you sign up, you’ll receive downloadable lesson plans as well as other resources about autism. ●

Find out more

• Visit www.autism.org.uk/waaw

to see our film and sign up today.

FEATURE • MY STORY

Myths, masks and

missed diagnosis Actor, author and comedian Stu Ferrol writes about being diagnosed as autistic, aged 45.

t was my stepson’s fault. His fault I was here at this assessment centre about to be told, like my nagging doubts had just about convinced me, that there was no way I could’ve gone 45 years without someone − including myself − noticing I was on the autism spectrum. I met my stepson in 2005, Obviously I’d met his mother prior to that, otherwise that would’ve been weird. What was also obvious was that he was different. Not in a bad way, just different. At the grand old age of six, he was diagnosed as being on the autism spectrum. This was followed with the usual bout of meetings with schools, specialists, and local authorities. During those meetings I’d get a sense of déjà vu. I’d had a troublesome childhood, including some time being seen by a child psychiatrist. Curious, and perhaps nursing an increasing suspicion I wasn’t yet conscious of, I asked for my medical records for that period. CHILDHOOD According to letters from when I was six years old, a psychiatric social worker was told that I had “anxieties, obsessional fears and phobias”, an obsessional quality to my drawings and obvious speech defects. Unfortunately

they interpreted my attempts to make some order and sameness out of what must have been a very scary world as my being a, “very spoilt child who manages to manipulate the whole family to comply with his wishes”. A lot of the blame for my meltdowns and terror (including night terrors) was blamed on one of my parents − readers of Bruno Bettelheim’s ‘refrigerator mother’ theory of autism will no doubt guess which one. After I had relatively settled back into a school routine (my absenteeism having been the trigger for the appointments) I was discharged and most of these issues were seemingly forgotten about. I wasn’t seen again by any professionals until the strains of having to deal with day-to-day life took their toll in my thirties. Despite everything I’d learnt and experienced through my son, it wasn’t until I finally gave in to those niggling suspicions and sat down to do an online diagnostic test that the penny dropped. I realised some things I had been doing or dealing with all my life were considered part of autism. One

“I realised some things I had been doing or dealing with all my life were considered part of autism.” 28

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of those was my audio discrimination issues, I’m not talking about hating country music but the fact that whenever I am in a loud or crowded place with lots of people talking at once I have trouble focusing on one person or source. For example, if I am in a noisy pub surrounded by a cacophony of chatter I can barely make out anything the person sitting only a few feet in front of me is saying. Over the years I have resorted to a kind of “Noddy”, (a term from TV news reporting where the interviewer films visual responses to an interviewee’s vocal answers without the interviewee even being there) including all sorts of gurning, raised eyebrows and widening of eyes to show interest. Although I had waited so long for an assessment, ironically my timing was perfect. Different areas of the UK used to have individual rules about referrals to adult autism assessment centres. Where I lived I couldn’t get an assessment through the NHS and

MY STORY • FEATURE

Stu’s stepson is on the autism spectrum

would’ve had to pay up to a grand to go privately. Thankfully this postcode lottery was ended in April 2015, a month before I made my referral. WAS I AUTISTIC? During the months I waited for my assessment I had plenty of opportunity to question my misconceptions about not only autism itself, but the misconceptions I had about me and the lies I had told myself over the years. After all we all want to believe we are popular, social butterflies with a list of exaggerated talents to match those of deluded Apprentice contestants. I had to brutally tear my rose-tinted memories from the possible realities whilst also picking apart the knots of cause and effect – was this situation caused by anxiety or depression or were they caused by autism? Luckily I had my stepson as a living example of how someone on the autism spectrum can have some common traits and behaviours and some that differ greatly from the perceived image of the condition.

The arguments that went through my head went something like this: “But I have a sense of humour... Hold on, my son has a sense of humour and he is autistic...” “I’m not obsessed about just one thing... Well my son isn’t either but, like me, he’ll have a few interests and perhaps a main one but they will change now and again...” “I don’t have trouble understanding colloquialisms or take them too literally... My son, oh hold on he does sometimes.....Actually don’t I get the sometimes comically literal interpretation of sayings or phrases a split second before I re-interpret them? Isn’t that where a lot of my off the cuff humour comes from?...” “I have empathy... My son has empathy too, sometimes it is perhaps not expressed well or easily swamped by other emotions, or sometimes misdirected and overcompensated.” I also had to recognise the signs of strategies and compensations, the struggles to be “normal” when it is clear you aren’t. We all wear masks

but an autistic person even more so. The catch-22 is that the effort to keep that mask on can take its toll and often leads to those of us who “present normally” missing out on support. You can get through the day, constantly wearing that mask, but you are absolutely exhausted after it. I’ve heard the expression “I didn’t know whether to laugh or cry”

YOUR AUTISM MAGAZINE

“You can get through the day, constantly wearing that mask, but you are absolutely exhausted after it.”

but hadn’t experienced that contradictory state until I was told the results of my assessment. I was grinning broadly when I was given my diagnosis of autism spectrum disorder without intellectual impairment but when I replied to my assessors my voice was breaking. I was relieved, happy but also sad and a little angry, especially for the sake of the child that I had been and the adult I had become – struggling in the workplace and in relationships. WOULD EARLIER DIAGNOSIS HAVE HELPED? And then came the questions – how different would my life have been if I had been diagnosed earlier? It is hard to tell whether my education would have been better as I doubt the school system of the early to mid-80s would have known what to do with someone whose mask seems so normal. I do think my experiences of work, training and further/higher education would have been vastly different if I had been armed with a diagnosis. Sadly, I also

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wonder whether, if I had chosen to declare my autism, I would’ve been hired in those jobs in the first place. Looking back at my own childhood/ teens and comparing it to my stepson’s, he has had to grow up with the knowledge of being autistic and the stereotypes and prejudices of the public, but he has had more support. He has his mother and I as guides, aware of but not restricting him due to his autism. He has been helped to study in his own way, with one-toone support and plenty of help with difficult transitions. Undiagnosed, I never received help and even when I was clearly struggling, in high school, I was ignored, allowed to drop lessons and fail to turn up for exams without much concern. I could argue that my not knowing I was autistic enabled me to aim for the same goals as everyone else and try things I would perhaps have avoided if I had a diagnosis. In my experience, however, the side effects of anxiety and depression can also force you down a path of avoidance. I may have been

forced to improvise, adapt and build my own coping mechanisms but that is no guarantee they were effective. They could have also caused more harm than good by increasing anxiety and rituals based on having to rehearse certain social transactions countless times, not to mention the selfmedication with alcohol and periods of complete withdrawal. I think it is not a question of whether you give someone a label but what that label means. Autism is associated with a lot of negative traits, widespread myths and misunderstandings. Perhaps this is not helped by most research being done by neurotypical people having to interpret everything in a way their particular neurological configuration understands. Imagine having all the literature on feminism written by men or race issues written by white people? This is why challenging the image of autism is vital and we need to hear the voices of autistic people themselves. Perhaps everyone would benefit from a social and working environment where we didn’t have to masquerade as stereotypes or camouflage ourselves as a mythical typical? Certainly those of us on the spectrum would appreciate an environment where that mask can come off. ●

Find out more

• Read more about adult diagnosis at www.autism.org.uk/adultdiagnosis. • Would you like to tell your story in this magazine? Email yourautismmag@nas.org.uk.

ADVICE • YOGA

The benefits of yoga How can yoga help children and young people on the autism spectrum?

OGA IS A POPULAR way of supporting our physical, emotional and mental wellbeing. It can be taught to autistic children to help them develop their motor skills and to manage anxiety. In 2012, researchers who investigated yoga in the study, ‘Efficacy of the ‘Get Ready to Learn’ Yoga Program Among Children with Autism Spectrum Disorders’, (published in the American Journal of Occupational Therapy) found that “use of daily classroom-wide yoga interventions have a significant impact on key classroom behaviours among children with ASD.”

Reducing anxiety Occupational Therapist and Yoga Teacher Mel Campbell explains, “Many autistic people experience difficulties with sensory processing;

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Yoga can help to reduce anxiety

“Yoga has helped me feel confident about myself and how to use my body.” Aaron, 7

the world at times may seem confusing, overwhelming and one in which they feel disconnected. They may experience a heightened state of anxiety, feel overloaded in their environment and have difficulties organising their body in a space to carry out purposeful, skilled and refined motor movements. It is estimated that 90% of autistic people have sensory processing difficulties. “Yoga uses a combination of movement (asana), with breathing

(pranayama) and meditation (relaxation). The asana aspect supports balance, coordination, and integration of both sides of the body, whilst developing strength, flexibility and muscle tone. It is thought that these movements of the body provide a lot of sensory motor input, known as sensorimotor, which can indirectly help organise the brain to support motor planning, body perception concentration, self-confidence, visual perception and thus learning.

Yoga at school Speech and language therapist, Lilias Nicholls, leads yoga at our Daldorch House School in East Ayrshire

“The breathing and relaxation exercises in yoga also help to calm and focus the mind. This has a direct influence on stabilising the nervous system, helping to calm heart rate and reduce symptoms of anxiety often seen in children with patterns of flight, fight, freeze when they are overloaded by sensory stimuli.”

A comforting environment Corinna Laurie, author of Sensory Strategies, adds, “Yoga’s natural

setting of dim lights, soft music and comfy mats creates a comforting environment with reduced external stimuli. Yoga’s physical poses allow nervous energy to be released from the body in a controlled manner and encourages a calming sensation. All in all, yoga provides a toolbox for teachers, parents and students themselves. It is a transportable practice that can be used in a variety of environments with very little equipment required.”

“The yoga sessions have helped me feel stronger and relaxed. I use the breathing exercises in school to calm down when I feel worried.” Evie, 12

“Six years ago I started leading a yoga programme for six of our pupils. We had four girls and two boys, aged between 10 and 16, take part who were autistic and had communication difficulties. One pupil was completely preverbal and would only make loud noises when distressed. However, all had shown the capacity to understand simple instruction and copy movements. I found a good sized, airy empty room for our yoga sessions and used lavender incense and candles to create a relaxing atmosphere. Each session contained a variety of simple poses, stretches, bends and inversions. After a few months of individual one-on-one sessions, two pupils were able to do yoga in the same space and on the last day of the programme, all six were able to enjoy yoga and a post yoga snack together – a real achievement! The results were hugely positive – our pre-verbal pupil began to vocalise voluntarily when calm, flexibility and strength increased, and everyone who took part appeared less stressed and anxious. We’ve kept the classes running ever since after seeing their many benefits.

Find out more

• Read more about yoga in Sensory Strategies by Corinna Laurie, available at www.autism. org.uk/shop. As a member, you receive a 10% discount on our publications. • Search our Autism Services Directory at www.autism.org. uk/directory to find an autismspecific yoga class near you.

YOUR AUTISM MAGAZINE

ADVICE • EATING

Sensory challenges with eating Concerned about the eating habits of an autistic person you care for? Read our guide for advice on the sensory issues that can affect eating and diet. B Y M E L A N I E WA L K E R , L E A D H E L P L I N E A D V I S E R

UTISTIC PEOPLE CAN experience sensory issues and process everyday sensory information differently. An individual may experience these differences in one or more of the seven senses, and may be oversensitive (hypersensitivity) or undersensitive (hyposensitivity), or even both at different times. These differences can understandably affect the way in which the person interacts with their environment, including their eating. For example, an autistic person who is hypersensitive to taste may prefer to eat bland foods, and is likely to find strong tasting foods too overpowering. Conversely, the following quote from a student illustrates how food taste can be experienced in the opposite (hyposensitive) direction: “Imagine that no matter what food you eat, whether it’s your favourite meal or favourite dessert, that it all tastes the same − like bland, unsalted, unflavoured oatmeal or cream of wheat.” Quoted in Sensory Strategies by Corinna Laurie, (2013), p17

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Varying sensory differences can cause autistic children and adults to limit their diet, even refusing certain foods and liquids because of their sensitivity to their taste, texture or smell. However, as long as the person has some dietary variety, is eating foods from each of the main food groups and is growing well, this isn’t necessarily an issue of concern.

When to seek advice It would be a good idea to seek professional support if the autistic person experiences any of the following: • a restricted diet: the person accepts fewer than 20 foods and/or refuses foods from one or more food groups • weight loss and lack of growth • constipation • lack of vitamin and mineral intake • excessive weight gain • lack of social and educational opportunities: anxiety around eating prevents the person from engaging in environments in which eating occurs • behaviour that challenges:

Keeping a food diary can reveal underlying sensory issues

mealtimes frequently result in the person having a meltdown • pica: eating or mouthing non-food items.

Ways you can help Keep a food diary It is important to always consult a GP or other medical professional about any dietary or eating behaviour concerns. However, keeping a daily food diary can help you build up an understanding of exactly what, how much and how often a food is being eaten by the individual, and can help reveal if there is an underlying sensory issue involved.

Identify the presence of sensory challenges The following tables give examples of the types of eating behaviours you might start to notice and which can indicate the existence of a hyper (over) or hypo (under) sensitivity in one or more of the senses that commonly affect eating: touch, taste, and smell.

ADVICE • EATING

Taste Hypersensitive Eating behaviours you might record:

Strategies to help

Hyposensitive Eating behaviours you might record:

Strategies to help

• Appearing to be a ‘picky’ eater, refusing certain food based on the flavour/temperature

• Provide exposure to new tastes by dipping toys etc. into blended foods or flavoured water

• Over stuffing mouth because they do not feel when their mouth is full

• Encourage oral-motor activities (eg blowing bubbles, whistles, mouth exercises) to ‘warm-up’ the mouth before meals

• Having a ‘beige’ diet as the foods the person accepts will mainly be of this colour

• Explore (touch, describe) food during playtime to help reduce fear around it

• Preference for eating powerfultasting foods (eg lemons, garlic, hot and spicy sauces)

• Gagging easily

• Use gradual desensitisation to switch between or introduce new foods: Mix one food with another by small amounts until you have fully moved from one to the other

• Adding of extra seasoning or condiments to food

Hypersensitive Eating behaviours you might record:

Strategies to help

Hyposensitive Eating behaviours you might record:

Strategies to help

• Being a selective eater, only accepting certain textured foods, (eg smooth foods like mash or yoghurt)

• Gradually introduce different/ averse textures in small steps to build up tolerance

• Over stuffing mouth because they do not feel when there is food in their mouth/when their mouth is full

• Model or provide visual supports depicting how much of a food/ how many spoonfuls go in the mouth before chewing and swallowing

• Resistance to trying new foods

• Constantly trying to eat, mouth, or lick food and sometimes nonedible items

• Provide crunchy snacks (eg carrots, crackers) to satisfy need for oral input • Encourage use of alternative ‘chew’ products (eg chewy tubes, chew bracelets, hard sweets) to keep the mouth stimulated and reduce mouthing of inappropriate objects

Touch

• Avoidance of differently textured foods mixed together (eg yoghurt with fruit pieces, soup with vegetables)

• Engage in messy play to introduce new/ different textures in a fun and safe environment.

• Chewing on a range of food and objects, including inedibles

• Encourage use of alternative ‘chew’ products

• Modify food to the desired texture (eg pureeing hard foods)

• Touching food with fingers to get a feel for the texture • Refusing to try new foods

Smell Hypersensitive Eating behaviours you might record:

Strategies to help

Hyposensitive Eating behaviours you might record:

Strategies to help

• Refusing to eat certain foods because of their smell

• Limit exposure to unpleasant or overpowering smells (eg have mealtimes in a different room to the kitchen)

• Reporting all foods taste/smell the same

• Modify ‘bland’ foods with fragrant elements (eg garlic)

• Craving powerful, extremesmelling foods

• Provide opportunities to stimulate smell before/during mealtimes

• Not wanting to eat in certain rooms because of the way they smell

• Gradually introduce new smells during play/leisure time (eg using smelly playdough or gel pens, or introducing herbs during gardening)

• Smelling/licking of food and other objects to become comfortable with it

YOUR AUTISM MAGAZINE

Visual timetables can demonstrate what will happen before and after a meal

Visual supports It can be helpful to use visual supports to show the individual what foods are on the menu for each mealtime, and in what order they will be presented. Allowing choices where possible can also help the person to have some control over the eating experience and in turn reduce anxiety levels. It can also be useful to present visual timetables or ‘first-then’ sequences to demonstrate what will happen before and after a meal, so the person knows that the eating experience will end. A social story could also be used to help someone understand the function of food and why they need to eat food from each main food group. It would also be a good idea to make visual stress or emotion scales available, to aid the individual to communicate their feelings and preferences.

Model and reward It would be advisable to model calm behaviour around eating, to participate in activities involving exploration of new foods, and to set an example of eating foods from the different food groups. Be sure to give praise and encouragement for successes of being in the presence of and even trying new/non-preferred foods.

Seek professional advice If sensory sensitivity appears to be the underlying cause of a problem, such as a restricted diet, then the individual’s GP may be able to refer them on to one of the following NHS professionals for support: • Occupational Therapist: will conduct sensory assessments and design programmes so that people with sensory differences can live more independently • Dietician: will assess and treat dietary related health issues • Paediatrician: will assess and treat child health issues, including dietary concerns. It would be preferable that any professional referred to has training/ experience in supporting autistic patients, so they would have a better understanding of the individual’s needs and challenges. You can also use our Autism Services Directory: www.autism.org. uk/directory to find the details of independent occupational therapists with autism experience. To find private dieticians, search the British Dietetic Association’s directory: www.freelancedietitians.org.

Consider other factors Whilst this guide discusses the sensory issues that can affect eating

behaviours, there are other factors that can also have an effect, and which may also need to be considered by the professional involved, such as a need for routine, illness, other conditions and medication.

Useful resources: • Our guidance on creating social stories www.autism.org.uk/about/ strategies/social-stories-comicstrips. • Visual supports: www.autism. org.uk/about/strategies/visualsupports. • The NHS Eatwell Guide to balancing diet across the main food groups www.nhs.uk/Livewell/Goodfood/ Pages/the-eatwell-guide.

Useful contacts: • The Challenging Behaviour Foundation offer information and support regarding anyone with a severe learning disability who displays challenging behaviour, including pica. Telephone: 0300 666 0126 Website: www. challengingbehaviour.org.uk. • Connect with our Online Community to discuss sensory challenges on the Health and Wellbeing forum and to share suggestions community.autism. org.uk.

YOUR AUTISM MAGAZINE

The National Autistic Society’s quality assurance programme has been running for 25 years

Spotlight on Autism Accreditation

How can our charity help you? Christine Flintoft-Smith explains the benefits of Autism Accreditation for services and those who use them.

hat is Autism Accreditation? Autism Accreditation is the UK’s only quality assurance programme based on the best autism practice. Established in 1993, the service has since supported over 800 services and schools worldwide to celebrate and develop their autism practice. Autism Accreditation’s members range from services for autistic adults to schools and hospitals. What does a service have to demonstrate to be accredited? Firstly, that it is committed to providing effective support which is rooted in an appreciation of current knowledge and understanding of autism. It should also show that it employs a personcentred approach which seeks to understand each autistic person as an individual whose autism is an integral part of who they are and who have their own unique qualities, abilities, interests, preferences and challenges. Thirdly, that it enables each autistic person to carry out meaningful tasks and activities by employing a range

Find out more

of individualised approaches. Finally, that autistic people are supported to achieve positive outcomes which have a significant impact on the quality of their lives. How long does the accreditation process take? Getting accredited takes two to three years, and involves ongoing support and consultation from an adviser leading up to an assessment. What benefits do services gain from being accredited? Being accredited demonstrates to professionals, families and autistic people that services are working to the highest standards of autism practice. Going through the process creates a culture of continuous improvement and learning according to an overarching set of values that enhances the climate for learning. How can I check that the service I’m using has Autism Accreditation? Each accredited provision gains the use of the Accreditation kitemark on correspondence and websites. A list of

Read more about Autism Accreditation at www.autism.org.uk/accreditation.

accredited provisions can be found at www.autism.org.uk/accreditation. Why should I encourage the services that help me or my family to seek accreditation? Autistic people and families can be assured that the provision is continually reviewing their autism practice to ensure that it is at the forefront of knowledge about autism and that it can demonstrate that it improves the lives of autistic children and adults. How does an organisation start the process of accreditation? Organisations can register at www.autism.org.uk/accreditation and an Accreditation adviser will call back to start the process. ●

“Accreditation helped us develop a clear vision for staff working towards best practice.”

- Accredited adult day service YOUR AUTISM MAGAZINE

RESOURCES

How to best help an autism mum AUTHOR: Sharon King PUBLISHER: Austin Macauley Publishers PRICE: £8.99 VERDICT: An uplifting account of life with three autistic children SHARON KING’S children, Rosie, Daisy and Lenny, are autistic and couldn’t be more different. Rosie is very articulate, Daisy has developmental delay, while Lenny is non-verbal. Sharon writes her book as advice to a friend or relative of a mum of autistic children, telling them what really helps. With chapters on sleeping, going out and the things that people say, Sharon offers invaluable practical advice. For instance, to lessen the pressure at children’s parties, she used to bring her children along for the last 45 minutes, citing a prior appointment. Overall, the book is a hugely uplifting read, as it conveys Sharon’s journey from worrying how to tell other people about her son’s autism to fully embracing the positives. My favourite quote was “Today, when I say the word ‘autism’, I speak of individuality, creativity, unique thinking and beautiful, candid honesty.”

Giveaways

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

Autism, anxiety and me by Emma Louise Bridge (Jessica Kingsley Publishers). Emma’s unique perspective as an autistic young woman with social anxiety offers a fascinating take on challenging issues such as employment, the transition to adulthood, friendships, and sensory sensitivity. Her diary provides an original voice from someone still in the process of figuring it all out. The ASD feel better book − a visual guide to help brain and body for children on the autism spectrum by Joel Shaul (Jessica Kingsley Publishers). Learn to build individual strengths and work through problems with this picture-based guide for children on the autism spectrum aged 7-14. To enter, email YourAutism Magazine@nas.org.uk with your name by 31 March, quoting either ‘Autism, anxiety and me’ or ‘The ASD feel better book’. The winners will be announced in the next issue.

Reviewed by Suzanne Westbury, Editor of Your Autism Magazine.

Our six favourite… autism-friendly holiday companies

LEAFY FIELDS GLAMPING, DEVON The first glamping company to achieve our Autism Friendly Award. Leafy Fields Glamping promises ready-pitched tents, miniature horses and a sensory play room. www.leafyfieldsglamping. com/autism-friendly

HELSEY HOUSE COTTAGES, SKEGNESS Two self-catering holiday cottages offering wheelchair access. Owners, Mark and Elizabeth Elvidge, are parents of two autistic boys and know how difficult it can be for families to have a relaxing holiday. www.helseycottages.co.uk

CAERWEN, PEMBROKESHIRE This holiday cottage has been specially adapted and equipped to cater for families with children on the autism spectrum. The accommodation includes a soft playroom on the ground floor. www.harriet-davis-trust.org.uk

Our six favourite continues onto page 45

YOUR AUTISM MAGAZINE

RESOURCES

Making friends. How the friendly group supports children and young people on the autism spectrum AUTHOR: Anita M Hughes PUBLISHER: Worth Publishing PRICE: £19.99 VERDICT: Insight into a successful social and therapeutic

group for autistic children This book outlines the structure and framework of a successful social and therapeutic group established by the author. Rather than being a ‘taught’ social skills group, the friendly group is a safe place where children learn to make sense of their feelings and experiences in a structured environment. There are many ‘real life examples’ in each chapter, which show the reader how the group leaders structured and led the sessions. These also explain how they supported the children to manage their feelings, problem solve, and support each other. I found the information and advice very useful both in my professional role, and also as a parent.

Love, partnership or singleton on the autism spectrum AUTHOR: Edited by Luke Beardon, PhD and Dean Worton PUBLISHER: Jessica Kingsley Publishers PRICE: £12.99 VERDICT: An amazing collection of true life reflections on love, marriage and the single life from 26 authors on the autism spectrum

I LOVED THIS BOOK. I − PNT [predominant neurotype] married to an autistic person – gained insight, hope and tools for my relationship. The anthology from almost entirely autistic individuals about their intimate relationships, their success, difficulties, learning and choices is amazing. There is detailed advice for autistic individuals and suggestions for the PNT. Written in different styles by unique people means most readers will find something of worth. I would recommend it to autistic people from teenage up, whether in or out of relationships, their parents, partners, professionals and anyone who knows someone on the autism spectrum (ie most people). Reviewed by Evelyn Proctor (writer) (pen name).

Reviewed by Debra West, Autism Family Practitioner, parent and Your Autism Magazine reader.

HAPPY KIDS HOLIDAYS, FRANCE This company offers autismfriendly holidays to France. The owners of all the properties or gites featured have an understanding of autism and are committed to providing a supportive environment. www.happykidsholidays.com

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

SPECTRUM BREAKS, ISLE OF WIGHT Hartlands House provides self-catering accommodation and facilities to support families with members of any age on the autism spectrum. Founders Colin and Elaine are parents of an autistic child. www.spectrumbreaks.co.uk

THE THOMAS CENTRE, SOUTH LINCOLNSHIRE The Thomas Centre is a holiday park for autistic children and adults. It offers a pool, sensory room, play barn and the chance to see grey seals on the nearby beach. www.thethomascentre.co.uk

Find out more about our Autism Friendly Award at www.autism.org.uk/afa.

YOUR AUTISM MAGAZINE

ALFIE’S STORY

BBC Earth have featured Alfie’s photos

I’m an… award-winning photographer

“I

19-year-old Alfie Bowen was bullied at school but now he’s successfully pursuing his passion for wildlife photography.

have always been passionate about wildlife but at school I realised this was probably not the best passion to have. My peers discussed cars, motorbikes, celebrities. Reading wildlife magazines led to me becoming the centre of a splurge of bullying and mockery. I left that school a broken person. However, following months of hard work from my mother, I was finally granted a place at a specialist school. Here I was encouraged to express my passion for wildlife photography. In June 2017, I held a sell-out solo exhibition in my local area of East Anglia. I exhibited a collection of 50 works and we sold every single one within four hours. It was a very proud moment to see my works framed − the ultimate destination for any photograph should be print. I still find it mind-blowing that people like my work enough to hang it in their homes − from my friend’s house in East Anglia all the way to America. I was flattered to receive interest from the BBC Earth Department in summer 2017. They posted six of my blackand-white works across three days on their Instagram, Facebook and Twitter. It still feels like a dream several months later. I will always remember a comment from a lady in Asia suggesting that my zebra photograph was the best she’d seen. I’ll be heading off to university in September to study photojournalism and I hope to use my camera to raise awareness of global issues in the future. With the encouragement of those around me and with the help of my camera, I have learnt that my autism is a gift rather than a burden − it enables me to photograph things that others simply do not see. ●

Alfie’s top tips:

Don’t compare your work to other photographers − it will only make you feel inferior. Mould your own unique photographic style.

Don’t be afraid to break from the ‘norms’ of photography; rules are there to be broken. Follow your creative instinct and imagination.

Most photographers make the mistake of thinking they can take 25 good photos per shoot, this is simply not the case. Prioritise quality over quantity.

Try not to get obsessed with your social media following − the real world is what matters so try your best to get your name out there in other ways.

Always love what you’re photographing. Feeling passionately about your subject will help you create your best work.

• See Alfie’s amazing photos on Instagram at @alfiebphotos or at www.alfiebowen.net. • Read our full interview with Alfie and discover the stories behind his photos of the white deer and Grévy’s zebra in Your Autism Extra. Sign in at www.autism.org.uk/digitalYAM.

SPRING 2018