Your Autism Magazine Issue Spring 2014 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE

CHANGES AND CHALLENGES How to survive the teenage years

ALSO IN THIS ISSUE:

HELPING YOUR CHILD TO SLEEP PROMOTING GOOD MENTAL HEALTH WE’RE FILM-MAKERS!

Universal credit What the next big benefits change means for you

ME AND MY BOY

Comedian John Williams on parenting a son with autism

VOL 48 – NO 1 • SPRING 2014

All in a day’s work Professionals talk about the challenges and rewards of working with autism

Spring 2014 EDITOR Elizabeth Ayris

WRITERS Heidi Aho, Zoey Parsons, Eleanor Wheeler NAS 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 Ten Alps Publishing One New Oxford Street London WC1A 1NU Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@tenalps.com www.tenalps.com SUBSCRIPTIONS Only available to NAS members C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 supportercare@nas.org.uk DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Eclipse Colour Tel: 01536 483401 F RO N T C OV E R © Steve Hickey www.stevehickeyphotography.com www.stevehickeyphotography.com 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 2014 Spring, Vol 48, No 1 The National Autistic Society ISSN 0045 7663 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of the NAS. 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 NAS endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that the NAS endorses or supports the groups or individuals running the website, nor does the absence of a website imply that the NAS does not endorse or support the group or individual running the website.

t seems rather late to be saying ‘Happy New Year’, so instead I will simply welcome you to the first issue of Your Autism Magazine for 2014. In the last issue, we focused on people’s experiences of accessing services. This time, we’re speaking to the professionals who provide some of those services. Dr Ian Ensum, a clinical psychologist, talks about the importance of autism-specific services and the things that all professionals can do to adapt their day-to-day practice for people on the spectrum. Meanwhile, head teacher Sarah Wild discusses the practical strategies her school uses to help its students learn and achieve. Elsewhere in the magazine, you’ll find features on sleep, teenagers with autism and (continuing the teenage theme) a group of young film-makers who have produced a training video for parents of newly diagnosed children. We also look at Universal Credit, which is starting to replace a number of existing benefits, and ask what the changes may mean for you. As ever, we welcome feedback on the magazine and your suggestions for future issues. This is my last edition as Editor and my successor, Eleanor Wheeler, will be bringing you the next issue.

10 Contents 04 News 10 Research in focus 13 Readers to the rescue 14 How do I... help my child to sleep? 16 Feature: My story 20 Feature: Diagnosing and supporting adults 24 Feature: Autism and education 28 Interview: Robyn Steward 33 Advice: Universal Credit 37 Advice: The teenage years 41 Spotlight on support: Healthy Minds programme 44 Resources 46 Spectrum Centre

PAGE

Elizabeth Ayris E D I T O R Visit our new Facebook page

www.facebook.com/YourAutismMagazine

37 YOUR AUTISM MAGAZINE

News

A round-up of the stories that affect you

Education training extends its reach

Eighty per cent of GPs feel they need to know more about autism policy

Autism becomes a clinical priority for GPs The Royal College of GPs has announced that autism will be a clinical priority for 2014-17 across the UK. This means a programme will be developed to raise understanding of autism, drawing on expertise from across the profession and the autism community. As part of our Push for Action campaign, we called on the UK Government to make sure that doctors have appropriate training in autism. In 2009, the National Audit Office found that 80% of GPs felt they needed to know more. With GPs taking more responsibility for local funding decisions, it’s increasingly important they fully understand

spring 2014

the complexity of the condition. Sarah Lambert, Head of Policy at the NAS, said: ‘It’s vital that GPs have a clearer understanding of autism so that they can refer people for diagnosis and support [them] appropriately. We will continue to press for autism to be included in the core curricula for GPs and other clinicians.’ We publish a guide to Asperger syndrome for GPs, an ebook about supporting older people with autism, and an ‘autism passport’ to help explain needs to health professionals. Visit www.autism.org.uk/ gpaspergerguide and www.autism.org.uk/ ageing/info.

The Autism Education Trust (AET) has launched a new early years and post-16 autism training programme. Funded by the Department for Education in England, it is part of the largest ever face-to-face autism training programme for schools, which aims to raise the level of autism knowledge and improve practice in schools. A number of training ‘hubs’ have been appointed, with early years training being delivered by North Yorkshire County Council, Birmingham City Council, the NAS with Thomas Bewick School, and Leicestershire County Council. Post-16 training will be delivered by Birmingham City Council, KAFEC (Kent Association of Further Education Colleges), Ambitious About Autism with Ealing and Hammersmith & West London College, and NORSACA. Dr Steve Huggett, Director of the AET, said: ‘We are pleased to offer training in four regions of England. This is the beginning of our early years and post-16 programmes and we hope to cover the whole country soon, just as we do with the schools programme.’ To find out more, visit www.autismeducation trust.org.uk.

SPRING 2014 • NEWS

Circus Starr has been entertaining audiences for 26 years

ROLL UP, ROLL UP! Circus Starr is a world-class

touring circus featuring acrobats, dancers, clowns and entertainers. Recent showgoers commented on how captivated and engaged they were by the acts. The highly visual performances appealed to many audience members with autism who were free to take time out or move around as they wished due to the relaxed environment. Circus Starr is a charitable organisation that works with local businesses across the UK, inviting them to buy tickets to shows, which are then donated to local families where one or more person has a disability, promoting access to live performance for people who can

be excluded from arts and cultural opportunities. In 2014, Circus Starr will be on tour again, visiting 25 locations across the UK during April and May. For more details of the Spring tour, visit www.circus-starr. org.uk and select ‘Tour News’. We have one family ticket for each date of Circus Starr’s Spring 2014 tour to give away! To enter, send your name, address and preferred venue to YourAutismMag@nas.org.uk or Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG. Only winning entrants will be contacted. Closing date: 14 March 2014. Good luck!

Our thanks go to Belle Vue House Assessment Centre in Ormskirk, which organised a sponsored 10K race in support of the NAS. Runners of all abilities helped to raise £6,106.73. Plans are already underway for the 2014 race, with Jude Brown, Head of Belle Vue House, saying: ‘We are getting more runners each year and [raising] an increasing amount of money for the NAS.’

THREE-YEAR BROKERAGE PROJECT LAUNCHES IN ENGLAND The National Brokerage Project is a three-year project run by The National Autistic Society. It is funded in England by the Department of Health’s Innovation, Excellence and Strategic Development Fund (IESD). Brokerage is about making sure that people and families who want extra assistance to plan and make choices about support can get it. Brokers work with individuals to identify who and what is important in their lives, what is working and not working, what they would like to change or achieve, and the support they might need to do this. People who are eligible for social care funding from their local authority and have a personal budget can use a broker. Self-funders can also use brokerage. At present, there are brokers working in Newcastle, Manchester, Plymouth, Leicester/Northampton and the surrounding areas. You can find more information about the brokerage service, and contact details for brokers, at www.autism. org.uk/brokerage. YOUR AUTISM MAGAZINE

NEWS • spring 2014

News in brief

Feel the beat

Bounce for autism Join our supporters across Scotland who will be taking part in ‘Bounce for autism’ on World autism Awareness Day (2 April 2014). It’s a fun event that you can interpret in your own way – and it will help raise vital funds and awareness for NAS Scotland. You can get involved by holding a sponsored trampoline bounce, completing a skipping challenge, buying one of our beach balls… the list goes on! Visit www.autism.org.uk/ bounce to order your FREE fundraising pack today.

In the pink Families in the Bristol area may like to know about Flamingo Chicks, a new fullyinclusive dance class for children aged five to eight. It aims to help develop children’s confidence, social skills, coordination and concentration. Each class costs £5, or it’s free if you have a blue badge. Parents can enjoy a coffee while their children get stuck into a bit of ballet or street dance, and there are simple yoga exercises at the end. Visit www.flamingochicks. co.uk to find out more.

DrumA recently performed live on television Children and young people with autism performed live on TV recently, as part of a drumming group called DrumA. Many of the group had never played drums before but have made great progress – so much so that they were invited to appear on BBC South’s Children in Need programme,

accompanied by a singer with Asperger syndrome. DrumA was formed last year by BBC South and local NAS branches, to give young people with autism a chance to showcase their musical talents. Those involved have developed friendships and grown in confidence along the way. One of the performers,

nine-year-old Max, finds social situations daunting but managed to put this aside to enjoy his time in the spotlight. Max’s dad, Russ, said: ‘The project has been great for Max and an opportunity for us to meet other families affected by autism. We all accept each other’s children for who they are.’

Wear your onesie with pride! Join us for Onesie Wednesday®, which is taking place in the weeks surrounding World Autism Awareness Day (2 April 2014)! Show your support by wearing your onesie or pyjamas and saying ‘It’s OK to be different’. There are many ways in which you and your family can get involved and show your support – from wearing a onesie to work, to having a onesie quiz or hosting a onesie gingerbread men cake sale! Whatever you decide there are lots of activities to suit everyone, so if you don’t have (or don’t want

You too could look this fabulous while fundraising to wear) a onesie, you can still get involved. Visit www.autism.org.uk/ onesiewednesday to download your FREE Onesie Wednesday fundraising pack, or call 0808 800 1050 to order yours today.

Congratulations to those nominated for our Autism Professionals Awards 2014. The Awards recognise services and professionals who demonstrate innovative autism practice and really make a difference to people’s lives. Read more about the nominees in the brochure included in this issue of Your Autism Magazine. The winners will be announced in March.

spring 2014

spring 2014 • NEWS

News special

Giant Push for Action button takes to the road A giant red button called Jenson, the mascot of our Push for Action campaign, went on a two-week tour around England in October to highlight the fact that adults with autism need more support. Starting from the NAS office

in London, Jenson visited 12 events organised by other autism charities and NAS branches. In each town or city, local people called on others to sign a petition calling on the UK Government to improve support. The petition, which

was signed by 9,000 people, was handed in to 10 Downing Street on 31 October by four campaigners including Johnny Dean, lead singer of Britpop band Menswe@r.

15 October: Westminster, London. My first stop was the Houses of Parliament, where adults with autism and their families encouraged their MPs to back the Push for Action campaign. 16 October: Great Yarmouth. My second stop was in Norfolk, where I visited Autism Anglia’s Information Day at Great Yarmouth Racecourse. 18 October: Islington, London. I had a productive meeting with Islington North MP Jeremy Corbyn at his constituency office. 21 October: Rotherham. I attended an event organised by local advocacy group Speakup and the NAS Rotherham Branch. I also had a good chat about Push for Action with local MP John Healey. 22 October: Sunderland. At the Autism Research Unit I met loads of passionate campaigners and people affected by autism. The event was organised by Autism in Mind. 23 October: Barrow. Thanks to the efforts of the NAS Furness Branch, my red face was projected onto the town hall! The event was attended by the Mayor and Mayoress of Barrow and local people affected by autism. 24 October: the Wirral. I took a ‘Ferry ‘cross the Mersey’ to

Barrow

The Wirral

Bristol

Harrow

Telford

Great Yarmouth

Rotherham

Sunderland

Here is our account of Jenson’s travels.

Harlow Islington Westminster 10 Downing Street

Birkenhead where I was greeted by Gerry Marsden, from Gerry and the Pacemakers. Then I met the Wirral Autistic Society and spent the afternoon rallying people to sign our Push for Action petition. 25 October: Telford. I met with Shropshire and Telford Asperger Carers’ Support and heard about their progress in improving autism services. 28 October: Bristol. I talked to Bristol County councillor Dr David Willingham about their progress

implementing the autism strategy. 29 October: Harrow. Today I met Councillor Sue Anderson, NAS supporters and the autism charity ASAP Harrow. 30 October: Harlow. In Essex, I visited children and families from local charity PACT for Autism. We were joined by the local MP Robert Halfon. 31 October: 10 Downing Street. After 1,295.8 miles my tour ended in Downing Street, where I met four other campaigners to hand in the Push for Action petition.

10 11

You’ll find more information about our Push for Action campaign at www.autism.org.uk/push. YOUR AUTISM MAGAZINE

Research in focus Bringing you news of the latest research into living and working with autism RESEARCH

Back to the future

A recent research project conducted at Durham University explored memory and ‘future thinking’ in people with autism. Dr Sophie Lind, now based in the Autism Research Group at City University London, discusses the findings. Most neurotypical people spend a significant amount of their time thinking about (and often talking about) things that have happened to them in the past and things that might happen to them in the future. However, research has shown that people with autism, on average, have more difficulty recalling past experiences and imagining possible future experiences. In a recent study, we set out to explore why this might be. One prominent theory suggests that to remember past events or imagine future events, you need to be able to create a ‘scene’ in your mind’s eye. In other words, you need to be able to construct a vivid mental image that involves sights, sounds, smells, thoughts, feelings and so on, by piecing together bits of information stored in memory. We aimed to test the idea that people with autism have difficulty remembering the past and imagining the future because they have difficulty with envisaging these kinds of scenes. We asked intellectually able adults with autism and neurotypical adults to try to recall past personal experiences (eg, what happened last time they went

SPRING 2014

Researchers asked adults with autism to imagine fictitious scenes

shopping), imagine possible future personal experiences (eg, something that might happen next weekend), and imagine fictitious scenes (eg, standing by a small stream deep in a forest) and describe these to the researcher. Adults with autism gave significantly less rich and detailed descriptions of remembered and imagined events and fictitious scenes than neurotypical adults. However, they gave descriptions of the events depicted in a wordless picture book that were just as coherent, rich and detailed as those given by neurotypical adults. This shows that any difficulties were not due to

language differences or limitations in piecing together information per se. Rather, the difficulty was specific to creating scenes in their minds. The ability to imagine alternative future situations is thought to be important for behavioural flexibility because it allows people to break from familiar routines. Thus, if we can find ways to help people with autism to imagine future experiences more vividly, we might be able to help them to behave in less restricted and repetitive ways. The full research report can be accessed free of charge at http://psycnet.apa.org/

research • Focus

Study asks if people with anorexia display traits of autism A recent study at Cambridge University’s Autism Research Centre found that girls with anorexia have an above-average number of autistic traits, as one of the researchers, Dr Tony Jaffa, explains. Our recent research found that girls with the eating disorder anorexia have an above-average interest in systems and order, and below-average scores in empathy. This is a similar, though less pronounced, profile to that seen in people with autism. In our study, we tested whether patients with anorexia have an elevated score on the Autism Spectrum Quotient (AQ), as well as on the Empathy Quotient (EQ) and the Systemizing Quotient (SQ). We tested two groups: girls with anorexia aged 12 to 18 years, and girls without anorexia of the same age. The patients with anorexia had a higher AQ and SQ, while their EQ score was reduced. Traditionally, anorexia has been viewed purely as an eating disorder. This is reasonable, since low weight and the risk of malnutrition has to be the highest priority. But underlying the surface behaviour, the mind of a person with anorexia may share a lot with the mind of a person with autism. There is the interest in systems, with girls with anorexia latching onto a system that concerns body weight, shape, and food intake. Autism and anorexia would appear to share other features too, such as rigid attitudes and behaviour, and a fascination with detail. The structure and function of brain regions involved in social perception is also different in people with autism and those with anorexia. There is a chance that some girls or women with autism may be overlooked or misdiagnosed because doctors see them first with anorexia. If we acknowledge that some patients with anorexia may have a higher than normal number of autistic traits, we

Exploring the experiences of BME communities In 2012, the NAS conducted its largest ever survey to mark our 50th birthday. A very small proportion of responses we received were from people from black and minority ethnic (BME) communities. The NAS exists to support everyone affected by autism so we decided to do more to engage with BME communities and hear about the views and experiences of these groups. Our BME project was launched in February 2013 with the backing of Diane Abbott MP. We set up a series of focus groups across the country with the help of local BME charities and support groups. The groups’ work finished in November 2013, and we are now in the process of writing a report based on their findings. We will be giving this report to the UK Government and other decision makers, and expect to share some of the information in a future issue of Your Autism Magazine. could develop new ideas for treatment. For example, shifting their interest away from body weight and dieting on to a different but equally systematic topic may be helpful; as could adapting the way we speak and the way we deliver our treatments. If we don’t, we run the risk of poor therapeutic engagement which we can then erroneously blame on poor motivation on the part of the patient.

Could you support vital research work?

One of the ways in which The National Autistic Society supports research is by advertising for participants in research projects on our website. To view current research projects which need participants, visit www.autism.org.uk/research/participate.

Y OU R A U T I S M M A G A Z I N E

Readers to the rescue!

Do you have a problem our readers can solve? Get in touch and benefit from the experience of other people living and working with autism.

For expert advice and information

story, explaining what happens, when. Sometimes our kids surprise us and cope really well with the large changes. If that’s the case it might be a good time to change an undesirable routine or obsession. — Gill

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

0808 800 4104

Take things that will make her feel more at home, such as her own blanket or pillow if space allows. Try to stick to routines by getting ready for bed at the same time and reading a favourite story. If she has issues with food (as I have always done) it might be worth bringing her favourite cereal, in case the choices on offer aren’t what she likes. — Jenna

Staying in a hotel for the first time may be an unnerving experience We hope to stay overnight in a hotel soon with our eight-year-old daughter. How can we prepare her for this new experience? — Peter Ring the hotel and ask them to fast track your check in. It’s always a stressful time if you have to wait around as your little one may be anxious or excited. We find ringing in advance and explaining how people can help usually gets good results. We

have done this with theme parks, hotels and restaurants. — Tamasin I show my son the hotel on the internet, read the descriptions and point out fun things to do, like play areas or swimming. Try to phone or email the hotel in advance. Explain that your daughter has autism and see if there’s anything they can do to make your stay more enjoyable. — Stacey Try writing a social

Think about your journey to the hotel, so your daughter knows what to expect, and ask about a quieter period to arrive and check in. If your daughter wants to explore or run round communal areas (as my son would) let them know. I mostly find people are fine if they’ve had an explanation beforehand. Take any important toys with you: my son goes nowhere without his important teddy, toy and book so he has something familiar with him. — Catriona

Help me next!

My nine-year-old son said he wants a doll. I had this with my older son – he’s 11 and still got his doll. I think I’d rather introduce other toys. How could I do this? — Lynne

Email your problems or answers to YourAutismMag@ nas.org.uk or write to: Readers to the rescue!, 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 letter to be published. We reserve the right to edit submissions.

YOUR AUTISM MAGAZINE

How Help my do I?

child get a good night’s sleep Learning to sleep through the night is something all children have to do, but for those with autism it may be a difficult process. Our Autism Helpline team looks at how families can help their child to sleep well.

BY THE NAS AUTISM HELPLINE

y the age of one, most children should be sleeping through the night. If your child is regularly unable to sleep or has a period of good sleep which is disrupted, they may have a sleep disorder. We recommend keeping a sleep diary to record when, where and for how long your child sleeps. This can be a first step in addressing any issues. If your child is at nursery or school, speak to staff so that they know about the problem and can offer support. Approach your GP or social worker too, and ask about a referral to an expert in sleep disorders.

WHAT CAUSES SLEEP DISORDERS?

SPRING 2014

Many children with autism are likely to have disturbed sleep patterns at some point. Sleep problems can be divided into settling problems, where a child has difficulty going to sleep; and waking problems, where a child wakes repeatedly during the night. In older children, waking problems may indicate that they are anxious or that they experience nightmares. Problems with ‘social cueing’ are common: your child might not make the connection between the family going to bed and their own need to sleep. A social story could be useful (www.autism.org.uk/ socialstories). Sensory issues may also come into play (see section 5). If your child has drink or foods near bedtime, try decaffeinated or sugar-free versions or gently phase them out.

USING RELAXATION TECHNIQUES

Children with autism may feel particularly anxious around bedtime and not be able to articulate their need to unwind. You may find relaxation techniques helpful. Here are some examples. • Add a few drops of soothing lavender oil to your child’s bath. • A gentle foot, hand or scalp massage might be calming. • Introduce an hour’s quiet time before bedtime. Doing a quiet activity could help your child to unwind. It also provides a social cue: if everyone in the house is quiet and relaxed then it is time to get ready to sleep. • Some parents have found music and gentle exercise, such as yoga, beneﬁcial. Others say that gentle lighting in the bedroom, such as a lava lamp, is helpful. • Set aside some time each evening when your child can talk about their day. It may help to have a ‘worry book’ so your child can write down or draw any concerns before they go to bed. • Rough and tumble play can be a good way of winding down. Although this is the opposite of the points made above, it might be more effective for your child.

How do i? • Feature

Establishing a routine

Some children are exceptionally sensitive to light and others are woken by very slight sounds. Dark curtains or black-out blinds help to block out light, while thick carpet and doors that shut properly help to reduce noise. Touch sensitivity is also common, so labels on bed clothes and certain materials may be uncomfortable. Some children find a weighted blanket reassuring; these are made from thick material, such as a quilt with bean-filled pockets.

If your child sleeps too much

If you keep a sleep diary, you may find that your child really does sleep for far longer than you would expect. This is a condition known as hypersomnia. Contact your GP for advice or a referral to a paediatrician. For some children with autism, their bed or bedroom may simply be a place where they feel comfortable and relaxed. One family sent their pet cat into their son’s bedroom, which encouraged him to get up. You could try gentle music; or use your child’s favourite toy or breakfast as an incentive. Older children and teenagers are especially likely to have motivational difficulties. They may have very real fears about the day ahead, or be experiencing depression. Excessive sleep in this age group could signify psychological problems and it is important to investigate.

Children with autism respond well to routines because they allow them to feel safe and in control. Consider setting up a simple routine which you can use anywhere: • 6.00pm: dinner • 6.30pm: quiet time • 6.45pm: drink • 7.15pm: bath • 7.25pm: clean teeth • 7.30pm: bedtime/sleep • 7.30am: waking up/getting up. A new routine can take time to get used to. It may help to present the routine visually and you could include quite a lot of detail, for example: close the curtains, get into bed, turn the light off, lie down, pull the cover up.

Making sleep more comfortable

Getting some sleep yourself

Getting a proper night’s sleep is hugely important. It may have been suggested that you sleep when your child sleeps, but this won’t necessarily be convenient and it can be difficult to ‘switch off’ on demand. By the time you have got your child to sleep, particularly if they needed calming down, you may feel too wound up to sleep yourself. Making your child’s room safe can be one of the easiest ways to improve your own sleep. If you know that your child cannot do any harm while you are asleep, it can help you to relax. Parents of children with disabilities may be eligible for respite services - contact your social services department and request a carer’s assessment.

Recommended books and resources

• When my worries get too big by Kari Dunn Buron. Available from www.autism.org.uk/pubs • Sleep better! A guide to improving sleep for children with special needs by V Mark Durand. • Solving children’s sleep problems by Maria Wheeler. The approaches in this book could be adapted for children with autism • Weighted blankets: www.rompa.com and www.specialneedstoys.com/uk/ • Charts for bedtime routines: www.VictoriaChartCompany.co.uk • Sleep Scotland, a sleep counselling service: www.sleepscotland.org • The Children’s Sleep Charity: http://thechildrenssleepcharity.org.uk

YOUR AUTISM MAGAZINE

FEATURE • MY STORY

My story

John Williams John Williams is father to ‘The Boy’, who has autism and cerebral palsy. In this real-life story, John tells us about his comedy show and blog, which he hopes will help others see more than just the autism. He’d like to introduce people to ‘this brilliant, dazzling Boy just waiting to shine’.

BY JOHN WILLIAMS

will always remember so clearly his birth all those years ago. I’ve felt inadequate at many points in my life, but nothing can compare to the inadequacy you feel as a male of the species on a labour ward. There’s only so many times you can offer to run a bath, wipe a brow, or move a blanket. At one point, about 20 hours in, his poor mother said she was hungry. I legged it to the Sainsbury’s next door. I had a purpose; a role to play. In years to come people would talk about the feast I, the hunter, provided at the birth of my child. I shunned the bright yellow stickers of the reduced sandwiches. Today, we would feast on Taste the Difference. I selected four or five packets – the taste buds had varied considerably during the pregnancy, I was unsure what would be the sandwich of choice for the birth. I would offer a range. A side order, there must be a side order… barbecue flavour Hula Hoops just felt wrong – crass, even. The situation called for a potato-based snack with more gravitas. Sea salt and balsamic vinegar. Perfect. Only the best for my unborn child. I returned to the labour ward like Christopher Columbus,

spring 2014

triumphant in my quest. I lay the feast out on the bed, beaming from ear to ear. ‘I don’t want *@&%ing sandwiches!’ she screamed with a look in her eyes I’ve never seen before or since, ‘Just get this thing out of me!’ And that was the end of life as we knew it. Eventually, he arrived. The Boy, as I will call him to protect his blushes, entered the world. Ten fingers, ten toes. It felt like we’d hit the jackpot. The skies were filled with a thousand stars, and not one of them shone as brightly as that beautiful baby boy did. Dad’s diamond. telling our story Little did any of us in that room envisage just how different our journey would become to the one we thought. Some time later, The Boy was diagnosed with autism and cerebral palsy. In many ways his time on this earth has been marked by one upheaval after another – as well as him coming to terms with the day-

to-day struggles of his condition, there has been an education system that struggled for so long to meet his needs, and a less than perfect healthcare package to match. But the one constant in it all has been him. Just him. For a long time, I wanted to tell his story. And I wanted to tell it because he has been misunderstood by so many people over the years. We all want our children to be loved. From the moment they’re born we listen out for the ‘Isn’t he cute’ or ‘She’s soooo adorable’. I’ll never win any prizes for subtlety so I might as well just say it: sometimes autistic children can be difficult for other people to like, let alone love. Phoning the nursery to tell them The Boy won’t be in today because he’s sick and hearing the relief in the voice on the other end of the phone. In Reception class being told by a parent that children like mine should be locked away. Going out for a family dinner knowing full well it will be my child that ruins it. Being told by teachers ‘I don’t know how you do

MY STORY • FEATURE

Comedian, blogger and dad John Williams

“The Boy makes me roar with laughter [and] question things I always, always took for granted”

it’ which is just a polite way of saying ‘I couldn’t put up with him’. Well, The Boy is a wonder. He’s my wonder. Despite the challenges, or maybe even because of them, he’s the very best thing in the world. Of course I’m biased. But I want people to give him a chance. To see past some of the strange, challenging behaviours and the outbursts. To chip away at some of the rock and discover this brilliant, dazzling Boy inside just waiting to shine. DISCOVERING A DIAMOND I’m a comedian, so I decided to tell our story the only way I know. I wrote a comedy show about our lives and a blog to accompany it. I know some people struggle with the concept of a comedy show about bringing up a disabled child. But

despite what others will have you believe, comedy doesn’t always require a target. The truth is, there is joy in our lives. The Boy is the person who has given me more pleasure than anyone else on this earth. There are times when he makes me roar with laughter, when he makes me question things I always, always took for granted. That’s why his voice deserves to be heard. We only celebrate disability in this world when there is a skill involved. The Paralympics, amazing though they

are, celebrate the ability and aptitude of the athletes. Well, sometimes, just being is enough. It’s in the smallness, in the everydayness of life that real beauty occurs. That’s what our story is about: just a celebration of the everyday, of being. And who knows, if you look closely enough, you might just discover a diamond...● John is a stand-up comedian and the author of a blog, My Son’s Not Rain Man, which you’ll find online at www.mysonsnotrainman.blog. html.

Share your story

Would you like to share your story about any aspect of living or working with autism? Please email YourAutismMag@nas.org.uk, write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, or find us on Facebook at www.facebook.com/ YourAutismMagazine and we may feature you in a future issue.

YOUR AUTISM MAGAZINE

Feature • Diagnosing and supporting adults

Any excuse… Dr Ian Ensum is a consultant clinical psychologist at the Bristol Autism Spectrum Service. He discusses the importance of autism-specific support, and why he’s always looking for an excuse to ‘hang around with people on the spectrum’. BY DR IAN ENSUM

Dr Ian Ensum leads an autism-specific service in Bristol

spring 2014

’m the clinical lead for the Bristol Autism Spectrum Service, a multi-agency specialist team for adults with autism. When it first started, the service used to be just me operating one afternoon per week, but now it’s a team of 20 working across three local authority areas. The service is for adults with autism aged 18 plus, and although it’s relatively well-established now, we had to fight to set it up and keep it going. I’m a clinical psychologist by trade and used to work in forensic services in secure psychiatric hospitals, and as part of a community mental health team. Some years ago I moved to Bristol and applied for a job, part of which was in a secure residential hospital for adults with autism. I didn’t have much experience of autism as it hadn’t figured in my undergraduate training, so I started to learn on the job. ESTABLISHING THE SERVICE In time, I received referrals from other professionals who knew I worked at an autism-specific service and viewed me as an ‘expert’. I’ve never seen myself that way: I think the experts are people with autism and Asperger syndrome themselves. In my view, when professionals start perceiving themselves as experts, they almost immediately become part of the problem. Lots of the referrals I received were about diagnosis. A certain group of adults – mainly those with Asperger syndrome – had nowhere to go if they thought they might have autism. They couldn’t go via mental health services or learning disability services unless they had a mental health problem or a learning disability. It was a career-

Diagnosing and supporting adults • Feature

Funding was an issue for the service in its early days

“When an adult comes to our service the most important thing we do is treat them as an individual.” defining moment when I realised that this group of brilliant, extraordinary, profoundly excluded people were the ones that were also excluded from receiving services. I asked the local NHS Trust to send me on diagnostic training at the NAS Lorna Wing Centre in Kent, then persuaded my Director of Psychology to let me start a service for adults with autism. It was just me, with no funding, no staff and no accommodation. I used to blag rooms at other services and move on when I had to. At one point, I literally operated out of the boot of my car, meeting people in cafés to talk about diagnosis and to try and offer support. When the service was shut down for the second time, I found out where the NHS commissioners were based and started a prolonged campaign of persuasion. I managed to secure a small amount of short-term funding, which meant I could bring some of my former colleagues from the hospital on board. We had to reapply for funding every year by illustrating how much we

were achieving and how much money we were saving other services. It was an interesting time, not knowing from one year to the next whether you would have a job. AUTISM BECOMES ‘FAMOUS’ And then, the Autism Act happened in England and everything changed. Autism became famous. Commissioners wanted to listen and also, they were obliged to start thinking about the development of local services. The irony is that before the Act, there was money in the system to pay for new services, but it was very difficult to make commissioners prioritise this. Now, thanks to the Act and the marvellous campaigns run by the NAS, everyone wants to talk about autism, but there’s no money any more. Happily, the Bristol Autism Spectrum Service is still funded and, while there’s still something of a postcode lottery, we are seeing new services for people with autism popping up. At the same time though, I recently became aware that one of

the oldest and best autism teams in the UK, the Nottinghamshire Adults with Asperger’s Team (NAAT), is in danger of being decommissioned. Anything your readers can do to help NAAT survive would be appreciated. Cuts to services are frustrating for me, because it seems like such a black-and-white issue. In the early days me and my team were kept going by our belief that adults with autism needed and deserved support. I have to say there was an element of selfishness as well: we were all essentially looking for an excuse to hang around with people on the spectrum. I was recently asked why I chose to work with this client group, and the most honest answer I could come up with is that I’m basically a fan. It sounds trite, but the people we work with are fascinating and quirky and extraordinary. It’s a pleasure to work with them. WE’RE ALL INDIVIDUALS And so here I am, a consultant clinical psychologist in a specialist autism team. My day-to-day work

Y O UR AUT I S M M A G A Z I N E

Feature • Diagnosing and supporting adults

The team thoroughly enjoys working with adults with autism

involves supervising staff, visiting wards and seeing inpatients on psychiatric wards. I also work with external professionals, such as people from the Courts service, social care, and the voluntary sector. I’ll talk through cases with them and discuss how they can best support the people with autism they’re working with. When an adult comes to our service for the first time, it sounds obvious but the most important thing we do is treat them as an individual. We recognise that everyone experiences some core difficulties but beyond that, we don’t make assumptions about what a person can and cannot do. We pick out what people are good at as well as the things they might struggle with – in other words we take a strengths-based approach, while bearing in mind that people do face very real issues. So many of the adults we see are socially isolated. We might talk about autism as an ‘invisible disability’ but in reality, human beings are very good at spotting difference in others and discriminating against them. Consequently, the vast majority of people we see have experienced some degree of bullying and exclusion. This for me is strongly linked to why so many people with autism become depressed in later life – there’s no reason why it’s inherently depressing to have autism, but it can be depressing to be so profoundly socially excluded. I’d also say that some adults with Asperger syndrome are traumatised by their time in secondary school. They are often singularly unprepared for the social apocalypse that is adolescence. Suddenly, children are thrust into this situation whereby their peers are constantly jostling for position in the social hierarchy – the rules of which are complex, fluid and largely inferred from others. I genuinely think that some of the people we see are still struggling with these experiences.

spring 2014

DIAGNOSIS AND BEYOND In terms of receiving a diagnosis, it helps that Asperger syndrome is a bit ‘fashionable’ at the moment – a brilliant, slightly cynical person with Asperger’s recently described it to me as ‘a Gucci diagnosis’. That’s not to trivialise it in any way, it’s simply to say that Asperger syndrome is not perceived as a ‘bad’ diagnosis in the way that schizophrenia or personality disorder might be. People can accept a diagnosis fairly readily and happily. However, there are still unhelpful misconceptions about autism, so people need good-quality information. After diagnosis, support is still not necessarily forthcoming. We work with other professionals to suggest ways in which they can adapt their work for people with autism. For example, cognitive behaviour therapy has been adapted and used with some success. This isn’t rocket science – good, wellthought-through treatment is probably going to be good treatment full stop. Any professional can adapt their day-to-day practice to meet the needs of people with autism: speak clearly, use concrete terms, don’t be ambiguous, consider sensory issues. A few tweaks might be all you need to offer a good service whether you’re a GP, a social worker or a psychiatrist. At the moment, we are trying hard to liaise with Atos (who provide occupational health services in the UK) to help them better understand how to do valid, meaningful benefits

assessments with people with autism. Hopefully they’ll be receptive – if not, we’ll just keep trying. My goal is to train, support and liaise with mainstream teams, to make it normal for them to work with people with Asperger syndrome and feel confident about doing so. The danger at the moment is that mainstream services will brush people off onto autism-specific services if they’re there. That means all the expertise stays in one tiny part of the care pathway, which is neither helpful nor sustainable. My hope is that we’ll get better at screening, identifying and diagnosing children. We won’t have to diagnose people as adults and I’ll have done myself out of a job. But until that happens, I think that developing innovative autism-specific services is the most important thing we can do. People with autism have been so poorly served for so long, there is an obligation on us to never be happy with what we’re doing, to never think it’s good enough. It’s a privilege to be part of a team like this, and I really can’t think of anything else I’d rather be doing. ●

Find out more

For advice on services or diagnosis, call our Autism Helpline on 0808 800 4104 (Mon-Fri, 10am-4pm) or visit www.autism.org.uk/diagnosisinfo and www.autism.org.uk/directory.

Feature • Autism and education

Working together to

make a difference Sarah Wild is head teacher at Limpsfield Grange School, a special school for girls with autism, Asperger syndrome and speech and communication difficulties. She talks about the school’s ethos; the practical, everyday strategies they use with their students; and the importance of diagnosing and supporting girls on the spectrum. BY SARAH WILD

impsfield Grange School is a Surrey County Council residential special school for girls aged 11 to 16 years old. We cater for a wide range of students, including those with autism and Asperger syndrome, speech, language and communication needs and for those students who would be vulnerable in a mainstream secondary school. Our largest cohort is those with a diagnosis of autism and this group currently makes up over half of our 68-strong student population. At Limpsfield Grange we really do believe that ‘together we make a difference’. The school is a unique provision and an amazing place. We believe it’s the only special school for girls with autism in the UK. We work alongside students to develop the areas of achievement, communication, independence and self-management. We also focus on helping students to develop their sense of identity and self-esteem. Our aim is for students to develop the emotional and mental resilience that will enable them to be

SPRING 2014

independent and active citizens in the future. We embrace diversity and celebrate difference in all that we do. Girls at Limpsfield Grange access a broadly mainstream curriculum accredited through GCSEs. The vast majority of our students make the transition to mainstream colleges post-16 and the expectation is that the girls will be able to have a job and an independent future. THE FEMALE PERSPECTIVE Students are taught in small groups of eight to ten, supported by a teaching assistant. The staff at Limpsfield Grange have a wealth of experience of working with young people with a wide range of special needs. We work in partnership with other professionals such as speech and language therapists and occupational therapists, as well as staff from Child and Adolescent Mental Health Services (CAMHS). We promote working with animals as part of our approach and have on our 11-acre site pygmy goats, chickens, ducks and alpacas. Many of

our students find looking after animals rewarding and for others it is a calming activity when they feel overwhelmed or anxious. I took over the headship of Limpsfield Grange in September 2012, just as the fantastic Paralympic Games were taking place in London. I am interested in communication and language and began my career teaching English in East London. Since then, I have worked in a number of mainstream and special secondary schools with deaf young people and those with autism. I passionately believe that women and girls with autism should have access to the same services, facilities and opportunities as men and boys. Talking to parents of girls on the spectrum it is very clear that they have to fight incredibly hard every step of the way, to be taken seriously; to get a diagnosis; to locate, and then access, appropriate support for their daughters. I am full of admiration for their determination, persistence and tenacity.

Sarah and her staff are keen to ‘celebrate difference’

“We talk with the girls a great deal and work with them to identify and label their emotions.” YOUR AUTISM MAGAZINE

and will often ask an anxious young person ‘What is the worst thing that can happen?’ to help them gain a different perspective. At Limpsfield Grange we are very lucky to work with an experienced Child and Adolescent Mental Health Service (CAMHS) nurse once a week and we are trying to develop a blended approach that uses CAMHS techniques and language across both the education and residential settings in school. This year we have started a research project with Professor Barry Carpenter and we hope that this will help us further develop our approach and practice. We constantly reflect on our practice and work as a team to get it right for our students.

Students are encouraged to talk about their needs and feelings In our experience, being a girl with autism can be challenging. Getting a diagnosis of autism can be very difficult – many girls are diagnosed late, or missed completely, because their social interaction skills mask their difficulties, or because the diagnostic tools have a male bias. It can be challenging for girls who often spend a great deal of their time and mental energy trying to fit in with other people who are a mystery to them. This endless social observing, checking and modifying can be demoralising and isolating and can lead to low self-esteem and anxiety. Many girls that we encounter live with high and unrelenting levels of anxiety which can be unpredictable and debilitating and, at times, uncontrollable. Such high levels of anxiety can be exhausting for the young person concerned and can have an impact on their families and their mental health. AUTISM-SPECIFIC APPROACHES At Limpsfield Grange we try and understand as best we can how these challenges can impact on a young person. We recognise that some days these challenges are manageable and some days they feel unmanageable. We always acknowledge how a young person feels and that their feelings are valid and important. We talk with the girls a great deal and work with them to enable them to identify and label their emotions. Wherever possible we ask them to explain their thoughts and feelings rather than demonstrate

SPRING 2014

how they feel through their behaviour. We wonder out loud about situations to show the girls how a conclusion is arrived at. We model different approaches to situations and get the girls to feed back on how things work. Lots of our girls like to know why something has happened rather than just knowing what to do differently. We encourage the girls to talk about their needs and to develop an awareness of the needs of others. We promote kindness and respect for each other and an acceptance that everyone is different and fabulous! We talk to girls explicitly about their fears or obsessions and work with them to locate the cause of their anxiety. We regularly use yoga-based techniques to help students attempt to self-regulate when they become anxious. We use visual and physical prompts to put things into context –

OVERCOMING CHALLENGES Working with parents is a central part of our philosophy at Limpsfield Grange. It is important that we share information and support each other. It is crucial that we know if a young person has had a significant event at home so we can support them in school. We also feed back to parents if someone has had a difficult time at school as this can have a detrimental impact on the family at home. This year we have established parental workshops where we focus on topics such as making the transition to adult mental health services, diet and nutrition, autism and anxiety, and sensory needs. Our parent sessions are open to Limpsfield Grange parents and parents of children with autism in the wider community. We are always happy to talk to any parents about issues and to offer support wherever we can. We are proud of our students, of the challenges that they overcome and the things that they achieve. We know that by working together we have all made a difference. ●

Find out more You can find out more about autism and education on our website. The section www.autism.org.uk/education is aimed at parents, carers and young people; while professionals can visit www.autism.org.uk/edprofs for information and practical resources. In England, the Autism Education Trust (AET) provides publications and training for professionals: www.autismeducationtrust.org.uk.

INTERVIEW • robyn steward

“I think it’s important to say that you don’t have to be academic to succeed. Vocational courses can suit people better and needn’t restrict their life chances.”

Robyn Steward is the author of a new book for women on the spectrum

SPRING 2014

robyn steward • INTERVIEW

Renaissance woman

Robyn Steward is a trainer, mentor and autism consultant – and she can now add ‘author’ to the list, having recently published her first book. We asked Robyn about her experiences in school and employment, and why she decided to write a book about women’s safety.

B Y E L I Z A B E T H AY R I S

hen Robyn Steward was a few months old, her parents noticed that she didn’t make eye contact or point at things. Robyn was eventually diagnosed with Asperger syndrome at the age of 11, but her parents had always been proactive about supporting their daughter. “My parents made sure I was mentally stimulated and learnt skills to communicate. They didn’t push speech: it was something that they encouraged but they were more interested in me being able to communicate – and obviously there are lots of different ways to do that. “The way that I started to learn language was through music. I always had a big interest in music, and my mum would get me to pay attention to her by playing guitar and singing. She also took me to a structured playgroup with musical activities. I started to pick up words from the songs we sang. “As well as Asperger syndrome I have nine other disabilities, including a form of cerebral palsy, three visual impairments, and prosocurposium, which means I don’t recognise faces. I recognise people by their shoes. I also have dyslexia, discalculia and dyspraxia.” Robyn went to a mainstream primary school with a special

educational needs unit. In Year 6 she was put into mainstream classes full time, but struggled as the teacher didn’t appear to understand autism. Despite this, she did start to develop skills that would be useful in her working life. “At school, I was good at IT. I’d teach other children how to do things on computers. I think I learnt a lot from that, because my teachers would say ‘Help the others to learn how to do things for themselves’. And now, I’m a professional trainer and a lot of my work is teaching people how to do things. I wouldn’t be able to do my job if I was just telling people the answers. “I did perceive that I was different and asked a lot of questions about it, so my parents discussed my diagnosis with me. Nowadays, people ask me whether a diagnosis should be shared with a child. I would say yes, unequivocally, because it’s a part of who you are and it’s important to know about it. “Despite some difficulties, primary school was OK for me overall. Going to high school was worse. I was bullied and I was quite slow to learn things as I had a three-year developmental delay. “I didn’t do too well in large group situations and I had difficulties with ‘theory of mind’: as an adult I’ve learnt theory of mind skills but as

YOUR AUTISM MAGAZINE

INTERVIEW • robyn steward

a young person I struggled with seeing other people’s perspectives. I may have come across as rude or dominating sometimes, which wasn’t my intention at all. “I was always picked last for team sports, because I did struggle with them a bit. The one time I was picked for a team was when we had a lunchtime quiz. I think that this can be a difficult thing to face. Kids with autism can be desperate to have friends, and being picked last all the time can fuel that desperation. We can end up doing people’s homework for them just because we want to make friends. I think schools need to recognise that children are good at different things, and celebrate this.” Robyn didn’t complete school, having been ‘asked to leave’ when she was 15. However, she did go on to study at college. “College did things that were helpful but actually pretty simple, like saving my favourite sandwich at lunchtime because it always cost the same and it provided continuity for me. College let me wear earphones and listen to music when I needed to. I was also able to take walks, which gave me a break – on my own, no pressure. Now that I’m a trainer I recommend this to others. “So, while I don’t have any GCSEs I did several vocational courses at college, and I think it’s important to say that you don’t have to be academic to succeed. Some people with autism find academic study and exams pressurising; vocational courses can suit people better and needn’t restrict their life chances.” After college, Robyn worked in the IT sector but after a few years, decided to become self-employed. “I worked for a large IT firm, and found it difficult to understand all the social stuff and fit in, but also I wasn’t keen on pressure selling to people. I didn’t like monotonous jobs, and my physical disabilities made standing or sitting for long periods of time difficult. “As a self-employed person, I can follow my own preferences and methodologies. I do still sell things – my services – but I do it in a way and

SPRING 2014

“As a selfemployed person, I can follow my own preferences and methodologies.” at a pace that I’m comfortable with. “As a trainer, I work a lot with schools and local authorities, teaching them more about autism and how to work with people on the spectrum. I started out by phoning colleges and asking if they’d like training – one said yes and they enjoyed it, so they recommended me. Over time, my reputation grew. “I’m also a mentor, something I initially did as part of a volunteering project in 2007. I work one-to-one with people on the spectrum to help them achieve their goals. “Lastly, I’m an autism consultant. I go into organisations and they ask me questions about autism and what they can do to make things better.”

Away from work, Robyn is an NAS Ambassador and an active autism campaigner. She is also the author of a new book, The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum. It is a subject close to her heart. “My book focuses on areas that autistic women say they have particular difficulty with: platonic friendships; sex and romantic relationships; drugs and alcohol; planning before you go out; the internet, mobile devices and information-sharing; money; work; and emotional wellbeing. “The book is very practical, with lots of tips, advice and quotes. I would’ve liked to have read this book when I was younger. As a person on the spectrum, you understand that some things may need to be explained explicitly. “One of the things that women experience is the progression from boys and girls being friends when they’re young, to boys not wanting to be friends with girls any more, to boys suddenly being interested again but at this stage it’s about sex and relationships. This subtle shift can be difficult for women on the spectrum. They might not know what’s expected of them, and feel anxious about what they should and shouldn’t do. “I do feel that women on the spectrum face some particular issues. I think that they can often mask their difficulties and learn coping strategies – and so they might look as though they’re interacting like everyone else. But actually, they’re hanging on the edge of a group and looking to see what other people do. They don’t necessarily have an intuitive understanding of situations, including situations where they could be vulnerable or at risk. I had some negative experiences myself and this is what prompted me to write the book. I really hope that it’s helpful to other women and, who knows, perhaps some guys, too?” ● Robyn’s book, The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum, is published by Jessica Kingsley Publishers.

ADVICE • Universal Credit

Universal Credit: who benefits? Are you feeling confused about the Government’s introduction of Universal Credit? Jane Owen-Pam, Welfare Rights Co-ordinator at the NAS, spoke to Your Autism Magazine about the new benefit and how it might affect you. B Y z o e y pa r s o n s

Our Welfare Rights Service offers advice, information and support on all aspects of social security benefit entitlement.

too. For more information about this, visit www.autism.org.uk/benefits. When will Universal Credit be rolled out? It’s a big change that will affect most benefit and tax credit claimants but the process will be gradual and the Government says that it will be fully rolled out by 2017. However, there have already been several delays in its introduction so it’s not something that’s going to happen overnight. Who will be affected by the changes? It will affect new claimants first, so people who are not already claiming the benefits that are I mentioned earlier. What about existing claimants? Existing claimants will eventually have their claims transferred to Universal Credit, after it has been tested on new claimants.

What is Universal Credit? It’s a new means-tested benefit for people aged between 16 and state pension age. According to the Government, Universal Credit will simplify the benefits system by replacing several of the main benefits with a single monthly payment. Who is it for? Universal Credit is for people who have a mid or low income, or no income, and whose savings are below £16,000. It will apply to a wide range of people including carers, parents, people who are in work or looking for work, and those who cannot work due to disability.

Which benefits are going to be replaced with Universal Credit? Universal Credit will replace quite a few benefits, including Child Tax Credit, Working Tax Credit, Housing Benefit, Income Support, Incomerelated Employment and Support Allowance, and Income-related Jobseekers Allowance. If you or your partner are claiming any of these benefits already you will be affected by the change. Will Disability Living Allowance be affected too? Disability Living Allowance is not affected by Universal Credit, although Disability Living Allowance is changing

Has Universal Credit been piloted anywhere yet? It was introduced in a small pilot in the Ashton under Lyne and Wigan Jobcentre areas in Spring 2013, then extended to the Oldham, Warrington, Hammersmith, Rugby and Inverness Jobcentre areas. The pilot has only been for new benefit claimants in these areas whose circumstances met certain criteria, which included being single and without children. Currently, the government says that it will make Universal Credit available in each part of Great Britain during 2016, and will start to introduce Universal Credit in Northern Ireland in 2014.

YOUR AUTISM MAGAZINE

ADVICE • Universal Credit

So, only new benefit claimants will be affected by the pilot? The Government had originally announced that Universal Credit would be extended to all new claimants who were not in work from October 2013. But at the end of 2013, the Secretary of State for Work and Pensions said: ‘Our current assumption is that the Universal Credit service will be fully available in each part of Great Britain during 2016...with the majority of the remaining legacy caseload [people who previously claimed other benefits] moving to Universal Credit during 2016 and 2017.’ Will people automatically qualify for Universal Credit if they are already claiming benefits? Some of the criteria for Universal Credit are different to criteria for the benefits that it will replace, so not everyone who qualified for the old benefits will qualify for Universal Credit. Will people get less financial support once their benefits change? Universal Credit is calculated in a different way to the benefits that it is replacing, so you may qualify for a greater or lesser amount of money. The Government has said that existing benefit claimants, except for those who are self-employed, will have transitional protection. However, at the moment these rules have not been finalised. What is transitional protection? Transitional protection will mean that if you’re an existing claimant who is moved onto Universal Credit then as long as your circumstances do not change you will not receive any less money, compared to the benefits that

it replaced. Transitional protection will end if your circumstances change. For example, if you start or stop living with your partner, or you or your partner stop working.

How will people receive Universal Credit payments? It will be paid monthly in a single payment, directly into your bank, building society or Post Office account. If you live with your partner the complete sum of the Universal Credit will be paid to one of you. Where should people go for more advice? Our Welfare Rights Service offers advice, information and support on all aspects of social security benefit entitlement. We can offer advice on which benefits you may be entitled to, general advice on completing claim forms, what to do if you think a decision is wrong and how to appeal to a tribunal. Alternatively you can have a look at our online information sheets which look at benefit changes and community care support across the UK. Visit www.autism.org.uk/benefits for more information. What’s the best way to contact the Welfare Rights Service? You can either email us on welfarerights@nas.org.uk or call the Autism Helpline on 0808 800 4104 (Monday-Friday, 10am-4pm). The Helpline adviser will take details of your query and arrange a telephone appointment for you with myself, or somebody else in the Welfare Rights Service. ●

Universal Credit will replace Child Tax Credit, Working Tax Credit, Housing Benefit, Income Support, Income-based Jobseekers Allowance and Income-related Employment and Support Allowance. 34

spring 2014

Universal Credit is a new means-tested benefit for people aged between 16 and state pension age.

Find out more A number of changes are taking place in the benefits system at the moment, so we recommend visiting the following websites for up-to-date information. GOV.UK website The official website of the UK Government contains information about benefits for children, families, adults and carers. Visit www. gov.uk/browse/ benefits. The National Autistic Society Our website has information sheets about benefits and community care services. Visit www.autism.org.uk/ benefits.

ADVICE • the teenage years

The teenage years are a time of rapid growth and development. Andrew Powell, from the Teenage Life programme in Bristol, discusses some of the changes and challenges that young people with autism and their families may face. BY ANDREW POWELL

e all experience physical, emotional and social changes in adolescence, and it is not necessarily the easiest time for anyone. For young people with autism however, the physical changes may be confusing, not understood or just not wanted. Emotional changes, meanwhile, may make mood swings and meltdowns more difficult to manage, and be frustrating for the young person. Socially there are greater demands on young people – relationships and group dynamics become more complex and this can be overwhelming. When we’re young, many of us may struggle to understand where we fit into the world, and this can be a particular issue for young people with autism. There are so many questions left unanswered: how do I get friends? How do I find work? How can I access college if I’m wary of meeting new people or doing new things? There are also wider fears for many young people: will I get a partner? Do I want one? Will my parents expect me to leave the family home at some point and how will I cope with this? Parents have similar concerns: what will be there for my son or daughter when I am no longer able to support them?

There are also often changes to young people’s daily routines, for example changing schools or moving from children’s services to adult services. Without good support, young adults can become isolated. If you’re the parent of a young person with autism, there is plenty you can do to support them. For the parents I work with, the main areas of concern tend to be understanding autism, social development, communication, managing behavioural difficulties, puberty, relationships and sexuality, legal frameworks, and access to local services. Understanding autism is the building block of everything. The average age for diagnosis has come down over the years but we still see people getting a late diagnosis, so families won’t necessarily have ‘grown up’ with autism or know exactly how it affects their child. If you are in this situation yourself, read books, go on courses, listen to people with autism speak, watch films on YouTube: try to see the world through the ‘autism lens’ and once you feel you know enough about the condition and your child’s specific needs, impart this knowledge to family members and those that work with your child. You could create a ‘Guide to me’ (with the help of your child if possible) to give to staff in school, college or local

groups that your child attends. This guide should be one side of A4 or A5, about 200 words, with some top tips – for example, clear details of what your child likes and dislikes, how to communicate effectively with them, what makes them happy or stressed and what to do about it. If you want to discuss an autism diagnosis with your child and are wondering how best to go about it, there are several good books including Talking together about an autism diagnosis by Rachel Pike (www.autism.org.uk/pubs). It is important to consider your child’s social development. Many young people would like to find friends; your child may benefit from meeting others who share some of their needs and interests through out-of-school clubs, social groups and befriending schemes. Some schools run nurture or social skills groups and it is advisable to check what is offered in your child’s school. While some people with autism get a lot out of meeting other people, others prefer their own company. The key is to give young people the skills to socialise as and when they choose to. You can also help your child to communicate effectively. Finding ways to get our point across and listen to others respectfully is important in all areas of life. Be very clear

YOUR AUTISM MAGAZINE

ADVICE • THE TEENAGE YEARS

A ‘Guide to me’ can help to explain your child’s needs to others

and straightforward in your own communication, allow your son or daughter time to process what you have said, and avoid language that could be confusing. It is also helpful to think about how you communicate with services such as schools and social care. Try to remain co-operative and be as clear as possible about what you need from them. The NAS can offer information and advice if you need it (see end of article). Understanding and managing difficult behaviour can be a real challenge both for parents and young people. Confrontations can increase during the teenage years, so try to be clear about what is acceptable behaviour and, in order to avoid too many meltdowns, choose your battles. Be kind to yourself as a parent and occasionally take time out if you can. It is a complex area with few quick fixes but there are a

Young people may benefit from meeting others who share some of their interests

SPRING 2014

number of practical strategies you can use. Most young people with autism struggle during the teenage years with one or more issues so seeing it as a stage to get through can help parents to cope. It’s impossible to give a comprehensive overview of this issue here, but you can read more in the book Autism: understanding and managing anger, available from www.autism.org.uk/pubs. Anything that builds self-esteem will be helpful, so find things that your child enjoys and is good at, and encourage these. Give them options to try new things on their own terms and in their own time. Helping young people to feel happy about puberty, sexuality and relationships is an important goal. Without good teaching on these subjects young people can be left feeling confused or guilty, as well as vulnerable to others

who would take advantage of their naivety. Sex education needs to be carefully delivered by people who really understand how information is received and processed by those with autism. Standard sex education in many schools is useful to explain the physical changes but wider issues about growing up and puberty are often not properly addressed. Being upfront, clear and direct is usually the best approach to take. The message that everyone involved should be trying to get across is that growing up is normal and not to be feared. You might use different materials to explain things, depending on your child’s preferred method of communication and, perhaps, whether or not they have a learning disability. If visual explanations or very simple, straightforward language help, a range of books from the Family Planning Association is a good place to start. Titles include Talking together about growing up and Talking together about sex and relationships. I often discuss the idea of a ‘parental checklist’ of things that a young person needs to know by the end of puberty. The checklist is about making sure young people know what sex is and isn’t, what is and is not legal, how we should treat other people and how others should treat us. It is important for parents to understand the legal framework around service provision. When your child is a teenager, you (and they) will be making choices about their adult life and you should be clear

THE TEENAGE YEARS • ADVICE

Parents’ support is invaluable to their children The NAS offers advice to young people and their families

Free information sheets: ■ behaviour: www.autism.

about what is on offer and what you are entitled to. Support and services vary across the UK, with some councils providing more than others. However, you are entitled to request an assessment of your child’s needs through your council’s social services team. Parents and sometimes siblings can request a carer’s assessment. Many young people with autism can claim Disability Living Allowance and, after the age of 16, the new Personal Independence Payment (PIP). There are also work-related benefits including Jobseekers Allowance or Employment and Support Allowance, though these are starting to be replaced by Universal Credit (see page 33).

In Bristol, I run Teenage Life, a programme for parents of children with autism aged nine to 18 that is funded by the local NHS. In other parts of the UK, the NAS runs Autism Seminars for Families; local groups offer information and advice; and some local authorities run a Barnardo’s programme called Cygnet. While families can face a lot of change and upheaval during the teenage years, the main message I try to give to parents is that your child is likely to be feeling vulnerable and confused. Young people need those who love them and work with them to be patient and understanding. As a parent, your support will be invaluable. ●

Autism Helpline If you would like to talk about any of the issues mentioned in this article, call our Autism Helpline on 0808 800 4104.

org.uk/behaviour ■ communication: www.autism.org.uk/ communicating ■ puberty, sex and sexuality: www.autism. org.uk/sexeducation ■ benefits and assessments: www. autism.org.uk/benefits.

Services: ■ find services in your

area: www.autism.org. uk/directory ■ Teenage Life: www.autism.org.uk/ bristolautism ■ Autism Seminars for Families: www.autism. org.uk/familyseminars ■ the Cygnet programme: www.barnardos.org.uk/ cygnet.

YOUR AUTISM MAGAZINE

Spotlight on support...

Liz Fossu with her son Linus

YOUR AUTISM MAGAZINE

RESOURCES

Asperger’s syndrome: workplace survival guide AUTHOR: Barbara

Bissonnette PUBLISHER: Jessica

Kingsley Publishers PRICE: £14.99 VERDICT: a treasure trove of advice for anyone with Asperger syndrome who wants to flourish in their chosen career IN THIS comprehensive look at the workplace, Barbara Bissonnette has written a tremendously helpful guide to working while having Asperger syndrome. A former business executive, Bissonnette was studying for her qualification in executive coaching when she chanced upon a seminar on coaching employees with Asperger’s. She discovered her passion and has been working with employees with Asperger syndrome ever since. The author of the companion book The complete guide to getting a job for people with Asperger’s syndrome, Bissonnette covers, through anecdotes and strategies,

everything from the first day at the office, to networking, to whether a managing role is right for you. Bissonnette is especially capable of explaining strategies to circumvent confusing work situations, such as accepting feedback (listen carefully, take notes, and don’t become defensive), dealing with office politics (ask a work buddy to be your ‘interpreter’), or planning projects (always add extra time to allow you to deal with unforeseen emergencies). Most noteworthy is her subchapter on managing anxiety, which contains a detailed step-by-step guide to evaluating a situation and appraising the variables of a particular problem in the office that is causing stress. The problem-solving model Bissonnette proposes is not only helpful, but actually empowering in helping the reader put rational analysis ahead of irrational anxiety. Although Bissonnette’s book contains a lot of common sense – a lot of communication is non-verbal, it’s important to plan, and it’s crucial to control your emotions in the workplace – what makes her book noteworthy is the sheer amount of information; while reading the book it appeared as if Bissonnette had anecdotes and strategies to deal with almost every workplace scenario imaginable – including what to do if you are fired. Bissonnette wrote her book for an American audience, but her treasure trove of wise advice makes it a worthy read for anybody with Asperger’s who is looking to flourish in their career. Flynn Hagerty, Writer/Editor, The National Autistic Society. Flynn has a diagnosis of Asperger syndrome.

To order books recommended by the NAS, go to www.autism.org.uk/amazon

Our six favourite… blogs about autism

CATASTRASPIE Written by a 30-something cat lover with Asperger syndrome, this blog ranges across topics including emotions, empathy and relationships. There is also a particular focus on supporting students with Asperger syndrome in higher education. http://catastraspie.wordpress.com/

SPRING 2014

ASPIENAUT As well as writing the Aspienaut blog, which discusses everything from ‘black and white thinking’ to fatherhood, Paul contributes posts to Squag, a website for young people with autism and their siblings. http://aspienaut.tumblr.com/

GRACE UNDER PRESSURE Sophie Walker is mum to Grace, who has Asperger syndrome. She is also an NAS supporter and is in training to run the London Marathon for us. Sophie’s blog reflects on day-to-day life and Grace’s achievements. http://courage-is.blogspot.co.uk/

RESOURCES

Let it go AUTHOR: Dame Stephanie Shirley

WHEN I first started work at the NAS, I had never heard of Dame Stephanie ‘Steve’ Shirley. During my first few months of trying to get to know the autism world I spent a lot of time visiting many organisations supporting people with autism. It soon became clear that the vast majority of these organisations had been supported by Steve at some stage in their development. Kingwood Trust and Priors Court School were two particular examples, where her support has made a massive difference to the lives of all those who have lived and been educated there. Having seen the evidence of Steve’s philanthropy I was keen to meet her. When I did I was struck by her warmth, her energy, her rigour and above all her passion and interest for a cause that has become a big part of my life, too. I could not possibly have guessed at that first meeting what an incredible life she has had and how this has shaped her into one the country’s leading philanthropists. Let it go tells the story of the five-yearold Stephanie arriving in London on the Kindertransport with her older sister just before the outbreak of World War II, with a thousand other Jewish children separated

from their parents and barely speaking a word of English. From this beginning, the book explores her early working life at the Post Office Research Station where an important task was checking the randomness of ERNIE, the premium bond machine! It moves on to describe the frustration she felt at the sexism she experienced and not getting to where she should be based on merit: the experience that drove her to establish one of the most successful consulting companies, FI group, creating flexible, home-based employment and ownership opportunities

for skilled and talented women. The book also explores the impact of her separation from her parents at such a young age and, of course, the life of her beloved son, Giles, who had autism. What is clear is the pain and anguish experienced when arriving at the decision that Giles would need to live in residential care – and the desperation and distress with the conditions of the institution he went to. This was clearly a major driver behind Steve’s decision to support the development of smaller residential homes for people with autism. Giles died at an early age, and this led Steve to focus her energies and philanthropy in the field of research – being driven to understand the causes of autism. So what do we learn about Steve from her book? Here is a woman who is resilient, has battled adversity and turned all the challenges she has faced into opportunities; a woman whose love for her husband and son shines through; a woman who is passionate about her work – not for the money she can earn but for the difference it can make to people’s lives. And, of course, a woman who has played a key part in shaping understanding of, and support for, people with autism. Mark Lever, CEO, The National Autistic Society

PUBLISHER: Andrews UK Limited PRICE: £8.99

ASPERGERS: THROUGH MY EYES A weekly blog by Stephanie Marsh, who has Asperger syndrome herself and also works in a residential special school for children with autism. Recent posts have discussed food, anxiety and taking things literally. www.spectrumeye.wordpress.com

LOOK ME IN THE EYE John Elder Robison is the father of a son with autism, and also on the spectrum himself. He is a published author who speaks at schools and conferences, and a prominent advocate for the autism community in the US. http://jerobison.blogspot.co.uk/

DUDE, I’M AN ASPIE A largely visual blog which is home to Matt Friedman’s lively, handdrawn cartoons. Matt is a nonprofit marketer/fundraiser and amateur cartoonist who was diagnosed with Asperger syndrome in his 30s. His blog promotes a greater understanding of autism. www.dudeimanaspie.com/

YOUR AUTISM MAGAZINE

SPECTRUM CENTRE

We’re filmmakers! Charlie, Kieran, James, Joshua, Nikki and Simon are students at the Spectrum Centre in Kent, which specialises in teaching children and young people with autism and Asperger syndrome. Recently, they starred in and produced a film about autism.

IX TEENAGERS with autism took up the challenge of producing, directing and starring in their own training video to help parents with children who have just received a diagnosis. Charlie, Kieran, James, Joshua, Nikki and Simon are Year 11 and 13 students from the Spectrum Centre, a unit which specialises in teaching children with autism and Asperger syndrome based at Longfield Academy in Kent. As part of a mainstream secondary school, the Spectrum Centre supports 40 students with autism in developing their socials skills, mindfulness and emotional literacy. The students took the opportunity of making the video when an old version needed replacing. They wanted to make a video which showed how they felt about their autism, how they felt when they got their diagnosis, things they had overcome and advice they would give to parents or teachers. With the support of Kent Community Health NHS Trust’s speech and language therapist Maggie Cook and class teacher Julie Mulholland, the students chose their approach and carefully selected the questions they wished to address. As well as taking up the director’s chair and the limelight, the students did all the technical work themselves (with a little help from the IT department!). Kieran, who hopes to pursue a career as a musician, even composed a rap for the end of the video. At first, the students were nervous about watching themselves on film and hearing their own voices on a recording. But, following the screening of the video to several audiences of professionals and parents of children with a

diagnosis of autism, they were delighted with the feedback. Charlie said: ‘Everyone thought the video was a great success and learned a lot about what autism is really like.’ James added: ‘We helped people out, and showed [parents] what their children can achieve.’ Everyone involved in the project has been overwhelmed by the positive responses they have received. Some parents found the students’ approach to their autism inspirational and uplifting, and others talked about how it has given them hope for the future. Many of the students at the Spectrum Centre have difficulty when it comes to social interaction with their peers, but leading question and answer sessions at screenings of the film has helped Charlie, Kieran, James, Joshua, Nikki and Simon to improve their skills. Being film-makers has also provided an opportunity for them to voice some of the non-academic achievements and successes they have had at school. And the success of the video continues. Having already clocked up over 1,000 views on YouTube, Longfield Academy plans to show it at parent coffee mornings, at a staff meeting for local police community wardens and at parent training. Kieran said: ‘I feel really proud, like I’ve made a difference.’ ●

To watch the students’ film, visit www.youtube.com/watch?v=PAKEx1G5xLA.

SPRING 2014