Your Autism Magazine Spring 2017 by The National Autistic Society

Autism YO U R

How to challenge a PIP decision Advice from the experts

DISCLOSING YOUR DIAGNOSIS AT WORK We look at the risks and opportunities

www.autism.org.uk

MAGA ZINE VOL 51 – NO 1 • SPRING 2017

BEING TRUE TO WHO YOU ARE Femme activist, Marilyn Misandry

MUM AND ENTREPRENEUR, CHRISSIE LOWERY I’M AN... AWARD-WINNING SWIMMER REVIEW OF LIFE, ANIMATED

Being there for Johnny Henry Normal and Angela Pell talk about parenting

Spring 2017 EDITOR Eleanor Newland WRITERS Flynn Hagerty, Jamie Nightingale, Alice Todman and Suzanne Westbury.

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 Publishing Tel: 020 3859 7100 annav@jppublishing.co.uk www.jppublishing.co.uk SUBSCRIPTIONS Only available to members of The National Autistic Society C O N TA C T Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 membership@nas.org.uk DESIGN James Pembroke Publishing www.jppublishing.co.uk PRINT Wyndeham Grange Tel: 01273 592244 The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road London EC1V 1NG © Your Autism Magazine 2017 Spring Vol 51, 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.

appy New Year! Wishing you all the best for a happy and healthy 2017. This issue, we’ve got some inspiring interviews with autistic people who are achieving in different spheres. Nicky Priest and his mentor talk about working in theatre and getting the right support. Marilyn Misandry tells us about overcoming bullying and her thoughts about gender identity. We also hear from Chrissie on parenting her five children while coping with a chronic illness and starting her own business from home. You’ll also fi nd practical advice on challenging PIP decisions and bed-wetting – as well as deciding to disclose that you’re autistic at work or when looking for a job. Please email YourAutismMag@nas.org.uk if you’d like to share feedback or thoughts on what you’ve read.

Eleanor Newland EDITOR

Visit our Facebook page www.facebook.com/ YourAutismMagazine

30 Contents 04 News 11 Research in focus 15 Readers to the rescue 16 How do I… understand sensory overload? 18 Interview: the Normals 24 Feature: Marilyn Misandry 26 Feature: being an autistic actor 30 Feature: my story 34 Advice: challenging a PIP decision 36 Advice: should you disclose at work? 41 Spotlight on support: e-befriending 43 Reviews 46 I’m an... awardwinning swimmer

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News

A round-up of the stories that affect you

LAST CHANCE TO SHARE VIEWS ON WORK WITH THE GOVERNMENT

A passionate supporter of autistic people

Celebrating the life of Becky Daley Around this time last year we lost a dear friend and great supporter, Becky Daley. Becky served as Vice President of our charity, a role which she delivered with absolute passion and dedication. In 2009, Becky joined a committee to help re-launch our annual fundraising ball. She went on to chair it for three years and helped raise nearly £300,000. It is hard to exaggerate how important Becky became to our charity, as a supporter, an advocate, and a friend. Becky was a wife, a mother

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and a grandmother. She was a teacher, a musician, a song writer and a tireless supporter of causes close to her heart. She was incredibly brave and selfless. Her advocacy and dedication to our cause was remarkable, especially as she had no family connection to autism. Current Vice President, Marianne Swannell, said, “Becky was dynamic. She was compassionate and effective as a VP of our charity. She was also great fun and a wonderful friend. It was a privilege to know her.”

CAMPAIGN UPDATE In October we launched the latest phase of our Too Much Information campaign, which aims to help more autistic adults get the jobs they deserve. Since then, over 30,000 of you have signed the petition to help close the autism employment gap. We know that work isn’t right for everyone. But without more understanding from both employers and the Government, autistic adults will continue to be left behind. The Government has committed to halving the disability employment gap. It has launched a consultation on disability, health and work, to understand how to improve the system for disabled people. The consultation closes on 17 February. This is your last chance to tell the Government about your experiences to help inform their plans. Your views will help inform their green paper – a document with ideas for how to support more disabled people into work. Respond at bit.ly/tmi-consult.

If you’ve not seen the film yet, watch it at www.autism.org.uk/tmi

SPRING 2017 • NEWS

Haydn’s dad is garden designer Alan Gardner

Gallery show for autistic artist Haydn Gardner In December, Leicester’s 50E

Gallery hosted the first solo show by talented, up-andcoming artist Haydn Gardner (24), who is on the autism spectrum. Haydn’s work features a menagerie of monsters, mostly drawn in brightly coloured inks. Growing up, he struggled with acute anxiety and depression which made attending his classes difficult. Despite this, he graduated from Coventry University with an impressive 2:1 in Fine Art and Illustration in 2015. Haydn received his autism diagnosis last year. It’s helping him to better understand how he responds to the world. “Creating artwork eased [my

anxiety] to the extent that it wasn’t crushing me,” says Haydn. “Painting monsters became a way to get those feelings out of me, so I didn’t dwell on them. It was a productive way of expressing myself and I started to see how this could not only help me but others too.” Sue Bee, Curator at 50E, said, “I had seen some of Haydn’s amazing creatures online. He’s very talented, but we know that autistic artists rarely have the opportunity to show and sell their work in a gallery space. So we were delighted to be able to offer him this opportunity.” See Haydn’s portfolio at messymiscreation.com.

EMPLOYABLE ME SET TO RETURN TO OUR SCREENS Great news, BBC series Employable Me is coming back for a second series. The acclaimed show explores the challenges people with various disabilities or differences can face when looking for work, and how these can be overcome. Look out for it on BBC Two in 2018. TICKETS ON SALE FOR AUTISM SHOW 2017 The Autism Show returns to London, Manchester and Birmingham in June. The national event for people on the autism spectrum, their families and the professionals who support them will showcase hundreds of products and services. Book your tickets at www.autismshow.co.uk or call 020 8882 0629 to find out more. VOTING TIME IN OUR SHORT FILM COMPETITION

Our amazing panel of judges had the difficult task last month of shortlisting finalists in journalism, TV, film and other media who have improved autism understanding for our Autism Uncut Media awards. Now it’s your turn to help us decide the winners! Visit www.autism.org.uk/uncut to vote for our People’s Choice Award.

Could you make it to the top of Scafell Pike? If so, and you think you could raise £250 for autism, take on our challenge on Saturday 12 or Sunday 13 August 2017. Email events@nas. org.uk to secure your place. A group of our intrepid trekkers YOUR AUTISM MAGAZINE

NEWS • SPRING 2017

Star fundraiser, Richard

Autistic comedians entertain Scottish Parliament A group of autistic adults

performed stand-up comedy for the first time at a unique event in December as The National Autistic Society Scotland celebrated its 20th anniversary at Scottish Parliament. The event, sponsored by Anas Sarwar MSP, saw Scottish Parliament receive its second Autism Friendly Award.

FROM MASTERCHEF TO MARATHONS Richard Johnston is the Chief Executive of Endemol Shine UK, the company behind programmes such as MasterChef and Big Brother. He’ll be taking on the Virgin Money London Marathon this year, inspired by his seven-year-old son, Louis. It won’t be Richard’s first marathon, but it will be his first in a decade. Richard says, “as I turn 50 two weeks after this year’s marathon, it feels like the perfect time for my swansong.” When Louis didn’t hit the usual milestones, Richard and his wife Lucy visited our website. He says, “We read about the signs of autism in children – Louis ticked just about every single one.” Richard’s hoping Louis will come along on the day, but the crowds may put him off. Although there are challenges, Louis’ family are supportive, and his siblings Daisy and Wilf, “make sure he doesn’t get everything his own way (much as he’d like to!)”

and most rewarding, thing I’ve ever done. I’m really pleased that I’ve been able to share the experience with Ashley. She has a real talent for interacting with the group.” The routines included wizards performing ‘improv’, procrastination, and romantic maths gags.

In the nine weeks before the event, the performers took part in workshops led by Janey Godley and her daughter Ashley Storrie. They learned to write and perform their own comedy. Janey’s husband and daughter are both autistic. She said, “These workshops have been the hardest,

ONE MAN’S TRASH IS ANOTHER MAN’S ART Our specialist day centre in Kent, Artrack (which provides studio space for new and established autistic artists) has had an exciting few months. James is a 15-year-old on the autism spectrum. He’s found a creative use for the things most people just toss aside. He was diagnosed aged three. And while other children were in the playground, James was keeping it tidy by picking up litter. Since then

he’s built upon his passion of keeping the environment rubbish-free. He started creating wonderful art with used scratch cards and discarded sweet wrappers. James says, “I always preferred to see litter in bins rather than it spoiling the countryside, parks and seashore.” In a process he finds therapeutic, he arranged them into what became his GCSE art project. James carried on making collages from recycled materials. He’s created an outstanding collection of artwork. His art has been displayed at a local National Park and a Knaresborough art exhibition. It’s also due to appear in the National Trust’s information centres.

Good luck, Richard! James takes recycling to a new level

See James’ art collection at www.hultoncrafts.co.uk/art.

Scale the London skyline! Join us outside Stratford’s Olympic Stadium to take on the UK’s highest freefall abseil of 262 feet down the ArcelorMittal Orbit sculpture on 14 May 2017. Visit www.autism.org.uk/abseil. Will you take on this daring challenge?

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NEWS • SPRING 2017

David and Winston featured in the Autumn 2016 issue of Your Autism Magazine

News in brief

REACHING NEW HEIGHTS One of our support workers was highly commended in the special recognition award at the Suffolk Care Awards. David Mudede was recognised for helping Winston Murrain plan the trip of a lifetime to attend his sister’s wedding. David, who is from Mildenhall, has been Winston’s key worker for ten years. Since the two started working together, Winston has developed a lot and is more able to interact with others. He has also become more independent and was able to move from his residential home to supported living. Winston’s sister got in touch to let him know she would be getting married in Jamaica in September. She wanted her brother to walk her down

WELSH AUTISM STRATEGY PROGRESS

the aisle. To prepare for this ambitious trip, David and Winston looked at photos of planes, airports and holiday resorts. They also went on a trial flight to Edinburgh and back, which Winston responded well to. David says, “Nobody would ever have thought Winston capable of this in the past so it was a good moment.” Our Middlefield Manor service was also highly commended for end of life care. The Suffolk Brokerage and Suffolk Association of Independent Care Providers hosted the awards at Kesgrave Hall in Ipswich.

LOCAL AUTHORITIES SHOW COMMITMENT TO SUPPORTING AUTISTIC PEOPLE Last year, two local authorities in Hertfordshire and North Yorkshire took successful steps towards making sure their services work for autistic people and their families. Hertfordshire Council signed up all of their SEN schools to our Autism Accreditation programme, while North Yorkshire County Council signed up their adult services. Our experts have now accredited all these schools and services. Autism Accreditation is an internationally-recognised quality

standard provided by our charity. Open to any service which provides help for autistic people, the intensive programme helps organisations note their strengths and good practice, and makes recommendations for areas that need further development. Senior Accreditation Adviser Christine Flintoft-Smith said, “This is a real achievement for both local authorities and will result in a more comprehensive area approach to supporting autistic people. It shows a commitment to understanding the needs of autistic people and providing them with tailored approaches to improve individual outcomes.” Learn more at www.autism. org.uk/accreditation.

8 SPRING

2017

The Welsh Government recently published its new autism strategy for Wales. A new National Integrated Autism Service will seek to deliver the aims set out in the strategy. But the plans stop short of introducing autism legislation, as called for by The National Autistic Society Cymru. Keep track of progress on our website.

GET READY TO FUNDRAISE This year we are on a mission: to raise as much money and awareness as possible during World Autism Awareness Week (27 March-2 April). See why Tom Morgan, Undateables star and semiprofessional rugby player, is getting involved by watching our video at www.autism.org.uk/waaw/film.

NEW DIAGNOSTIC CENTRE TO OPEN IN ESSEX Housed on our 13 acre Enterprise Campus at Chigwell, the new Lorna Wing Centre will open in September 2017. It will offer diagnostic and assessment services for all ages, both privately and through the NHS. Learn more at www.autism.org.uk/ lornawingcentre.

Research in focus

Bringing you news of the latest research into living and working with autism

Early training for parents helps build communication A project led by researchers at the University of Manchester shows early intervention training for families results in sustained change to ‘severely’1 autistic traits in children. Last autumn, The Lancet published the results of the study which focused on helping parents to better understand and communicate with their autistic children. The study found that the parent-mediated social communication therapy for young children with autism (known as PACT), made a clear positive difference for those children as they get older. In the trial, which involved 152 children between the ages of two and four, families made bi-weekly visits to a clinic for six months. There, the parents and children were filmed playing with toys. Whenever a child offered a toy, or made any indication they wanted to interact, the parent was encouraged to respond with guidance from a specialist therapist. After the clinical session each day, parents repeated the strategies at home. This was followed by six more months of less intensive therapy. The researchers found that there were changes in the children’s behaviour immediately after this first year of training. But the biggest finding of the study was that it was the first of its kind to see a sustained impact on children on the autism spectrum from when they are seven up to turning 11. In the control group of families who didn’t do the therapy, 50% were originally assessed as ‘severely’

Learning how to support your child early on is vital

autistic. After six years, this percentage had increased to 63%. But in the group which did the training, at the beginning 55% were assessed as being ‘severely’ autistic. After six years, however, this had dropped to 46%. Louise, who was part of the study with her son Frank, told the BBC, “You notice things you wouldn’t notice in real time. Things like waiting, giving Frank, plenty of time to communicate and commenting rather than questioning him, which puts on pressure to respond. You feel like you’re being really skilled-up by these people who trust your judgment about what makes your child tick.” We know that families are often on a steep learning curve about how best

to support their child after receiving a diagnosis and believe that all families deserve access to the right support and advice. Judith Brown, Head of Knowledge at our charity, welcomed the research, saying: “The researchers have put improving the everyday lives of autistic children and their families at the centre of this study, which is very encouraging to see. “We hope to see more provision of this type, rolled out by the NHS across the country, now that this study has shown how much of a difference it can make.” ● • Read the full paper at bit.ly/Lancet-paper.

1 This is a term used by the research team which we are repeating here for accuracy. It is not part of our charity’s preferred terminology. YOUR AUTISM MAGAZINE

RESEARCH • FOCUS The results showed great variation in support between institutions

Link in brain responses between ‘socially uncomfortable’ parents and their children Birkbeck ‘Babylab’ suggests a new link between ‘socially uncomfortable’ parents and their children being ‘less interested in faces and other people’ by the age of six months. Published in the autumn in the Journal of Child Psychology and Psychiatry, researchers from Birkbeck, University of London’s Babylab, the University of Washington (Seattle), and Seattle Children’s Research Institute believe their findings may be helpful in discovering more about the underlying causes of autism. The research shows that 6- and 12-monthold children who are seen as being at low risk of developing autism pay less attention to faces than average. It shows they have a reduced brain reaction to other people if their parents also report less comfort in social situations.

The researchers say this shows that while social attention may underlie and contribute to autism vulnerability, there are other key genetic or environmental factors which also need to be present for autism to develop. Dr Emily Jones, from Birkbeck’s Babylab, said: “Understanding infant social attention could be key to understanding the development of autismrelated traits. It could help us discover new genetic risk factors for low social interest in later life. It will also help us support infants at high risk of autism to develop social and communication skills within the same range as their low-risk peers.”

Testing reactions in the lab

HOW ARE UNIVERSITIES SUPPORTING AUTISTIC STUDENTS? Results from an independent research project into support for autistic university students show huge variation across the UK. Based on responses from 99 establishments, The High Achiever’s Project’s latest results show there are about 9,000 autistic students at university – an increase of about 200% from 2008/9 to 2014/15. They also show the percentage of establishments providing the 12 ‘key’ supports the project identified varied from an excellent (with a score of 92%) to a poor (with a score of 22%). Independent autism researcher Nick Chown from the project said, “We know that high-functioning autistic students are often high achievers academically. UK universities are legally required to make reasonable adjustments for these students. “We recommend that all universities follow the Government’s advice and adopt the Adult Autism Strategy statutory guidance. To demonstrate their commitment to good autism practice, universities should also consider seeking accreditation under The National Autistic Society’s scheme.” Find the full results at www.highachievers. website.

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

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

be required. Although we had prepared our son, the first few times it woke him he was so disoriented that he just wanted to get the alarm off rather than go to the bathroom, with obvious results. However, after a couple of nights of my going in and helping him, he now wakes and goes by himself. – Emma

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

0808 800 4104

Emma wins a copy of Something different about dad by Kirsti Evans and John Swogger.

It’s vital to find the underlying cause MY SON is now 31 years old but still wets the bed at night. I would be grateful for any advice. – Parent I’M 33 AND autistic. This may not be the problem at all but I had kidney and bladder pain with excessive weeing (polyuria) for eight years. Tests all show there’s nothing wrong. I have been on the GAPS diet (no starch) for 18 months. When I started a low salicylate diet it changed completely. The bladder and kidney pain went after two days, and instead of weeing up to eight times in the night, I now only go once. I have a nutritional

therapist working with me on this. – Eleanor WE ARE USING a device from Argos called Lil’ Jumbl Bedwetting Alarm. It has an elasticated band to go around the upper arm, under long sleeved pyjamas and a clip that goes onto the underpants. Apparently it is able to sense your need before you go to the toilet by detecting moisture in the air. The alarm goes off, which involves vibration as well as sound. The idea is that it wakes the child and eventually the brain retrains so the child wakes up before the alarm. Be aware that time may

Extra advice • The NHS recommends getting checked out for type 1 diabetes or a urinary tract infection. • Toilet Training and the Autism Spectrum (ASD) by Eve Fleming and Lorraine MacAlister is published by Jessica Kingsley Publishers. • Our charity runs training on toilet training for autistic people. Find out more by calling our Training Team on 0141 285 7117 or email training.enquiries@ nas.org.uk.

Help me next!

My 15-year-old son refuses to attend school. We’re getting basic home tuition only. Are there any other avenues I can pursue? He won’t consider a different school. — Maz SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of A girl like Tilly: growing up with autism by Helen Bates and Ellen Li.

Post your problems or answers on Facebook (www.facebook.com/YourAutism Magazine), 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.* *Read full terms and conditions at www.autism.org.uk/yam-readers-tcs

YOUR AUTISM MAGAZINE

How do I...

understand sensory overload?

Each child or adult on the autism spectrum is different. But what many have in common is a low threshold to sensory overload. Autism practitioner Phoebe Caldwell gives us her point of view on the possible causes, and how to reduce the stress caused by these experiences.

BY PHOEBE CALDWELL

t’s important that professionals, friends and family supporting an autistic person understand that addressing their sensory difficulties needs to come first – as these may be an obstacle to development and underlie distressed behaviour. Whether it’s sound, smell, light or a combination of sensory information that’s triggering overload varies according to the individual, and may change over time. It’s very difficult to assess a child’s cognitive level if they have sensory problems.

Imagine what sensory overload feels like Watch bit.ly/sensory-video. For autistic people, any of the senses may be over- or under-sensitive, or both, at different times, leading to overload of the processing system. This affects behaviour and may have a profound effect on a person’s life and their family’s lives. One way to think of the sensory processing system is like a jar that fills up until suddenly it overflows. This is the point when the autistic person cannot cope any more. One parent described this point as when someone has ‘no more head space’. Their self-defence system kicks in: they will try to get away from the cause of the overload as they see it, (avoidance), or the brain will ‘shut-down’, or they become aggressive towards themselves or others. Making sure one sense isn’t getting overloaded may allow other senses to function better. For example, someone who is finding the colours or lights in a room overwhelming (visual stimulation) may be better able to process what you’re saying to them (auditory information) if the visual signals to which they are sensitive are reduced.

SPRING 2017

Know that repetitive behaviours might be helpful

Many autistic people focus on repetitive behaviours in order to keep sensory overload in check. ‘Stimming’ provides a regular and controlled level of sensory information which can help a person to block out other information which is out of their control. Stimming behaviours are often coping strategies for dealing with an overwhelming situation. They perform an important function for the person: stopping them from doing the behaviour could make things worse.

Reduce overload from sound

For autistic people who have trouble processing sound, the messages from the ears get scrambled as they travel to the brain. This is not due to a fault in the ears (although

HOW DO I? • FEATURE

the person may have a hearing problem too). Loud, unexpected noises, overlapping speech, and certain frequencies may cause particular issues. If you have a loud, high voice, try talking softly. Headphones designed to remove background noise, like the ones used by helicopter pilots to be able to communicate over engine noise, can be extremely helpful, with marked improvements in ability to engage and calming behaviour. I use BOSE Acoustic Noise Reduction headphones 15, or 25. Cutting down incoming sound with ear muffs or ordinary headphones may mean the person stops trying to listen altogether.

Reduce overload from visuals

Bright and fluorescent light, particular colours, patterns and c ontrasts, or a combination of these things can all cause various distortions and overload. Sometimes known as Irlen Syndrome, these don’t show up in ordinary eye tests. Coloured lenses and filters that help people with dyslexia may also help some autistic people to process problematic visual experience. Comparative brain scans show a marked reduction in processing distortions. When doing a Colorometric test of this kind for an autistic person it’s vital the person doing the test understands how to communicate with the individual. Not all opticians and services currently offering tests are trained in autism. Contact Tina Yates at info@ irleneast.com for helpful information on services relevant to autism in your area. At home, the newly available Optimum LED colour changing light bulb (£7.99 from www.bmstores.co.uk) has 16 colours and will help you make a very rough assessment of how different coloured light affects behaviour.

Too much sensory information can lead to the brain temporarily ‘shutting down’

Under-sensitivity

Under-sensitivity to incoming messages can also be a problem. Children and adults who are constantly on the move, running, banging, climbing, rocking, jumping and scratching themselves, are not getting clear messages to the brain from their joints and muscles telling themselves what they are doing. They are trying to substitute for these through self-stimulation. As one autistic person put it, ‘If I bang myself hard enough, I know what I am doing’. Create opportunities for the person to experience deep sensory input at regular intervals during the day to help the person have a good image of themselves, otherwise they can experience loss of sense of self. The following may be particularly useful: Squease vests (www.squeasewear.com), Vibration units – try the Pixnor Massager (P2016), and regular short sessions on a trampoline, several times a day. ●

Was this advice helpful? Let us know at YourAutismMag@nas.org.uk.

Useful resources

• Phoebe Caldwell is an award-winning, expert practitioner with 45 years’ experience working with autistic people and also those whose severe learning disabilities are linked with behavioural distress. Her books include: The Anger Box: Sensory turmoil and pain in autism (Pavilion Publishers) Using Intensive Interaction and Sensory Integration (Jessica Kingsley Publishers) with Jane Horwood Find out more about her work at www.phoebecaldwell.co.uk. • Further reading: Sensory strategies by Corinna Laurie (The National Autistic Society) • Find more information and advice on sensory experience at www.autism.org.uk/sensory.

YOUR AUTISM MAGAZINE

Angela, Johnny and Henry

SPRING 2017

Photos © Scarlet Page

THE NORMAL FAMILY • FEATURE

MAGIC NUMBER THE

Henry Normal is an award-winning TV and film producer and poet. He and his wife, screenwriter Angela Pell, tell us about family life à trois with their 18-year-old autistic son, Johnny.

YOUR AUTISM MAGAZINE

FEATURE • THE NORMAL FAMILY

Johnny with one of his paintings

enry, Angela and Johnny are a creative trio. For many years, Henry was the managing director of Baby Cow Productions which he set up with Steve Coogan in 1999. Baby Cow produced such multiaward winning film and TV classics as Philomena, Alan Partridge, Moone boy and Gavin and Stacey. Angela wrote the screenplay for the film Snow cake about an autistic woman who was played by Sigourney Weaver, and is working on a film version of The reason I jump with novelist David Mitchell. And Johnny is a keen artist whose work has

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been included in several exhibitions, as well as illustrating the cover of his dad’s latest poetry collection. Their home in Brighton is especially adapted for Johnny. He has a little studio just off the kitchen, with a window in the door so his parents can keep an eye on him. “Johnny likes art, he likes sport, he likes going for walks,” says Angela over a cup of tea at their dining room table while we wait for Johnny to arrive home from his day at a local service. “He likes sorting stuff out for the tip every week. Recently he’s been doing sessions at a local farm, making fences and dams – lots of digging and wheelbarrowing. I think

being out in nature helps because nature makes no demands on you.” EARLY DAYS Johnny was a toddler when Henry and Angela first thought something might be different about him. “You don’t know at all that you’ve got a problem when it’s your first child,” explains Henry. “You’re told they go through stages. We were told repeatedly Einstein couldn’t speak till he was four…” Angela laughs, “I do remember thinking, “If someone says that to me again I’m going to punch them!”’ “I remember I’d set up some play shops in the garden,” she continues.

THE NORMAL FAMILY • FEATURE

“Johnny is confident and loved because all through those years, every time he looked up there would be someone there to reassure and encourage him.” — Angela

“I was wheeling him around in his little plastic car saying, ‘Let’s go to the shop!’, and there was no reaction at all. I thought, ‘I’m sure I’m doing the right thing here’. I spoke to a friend who had two kids already, and she suggested we get a check up.” They were referred to a specialist by a paediatrician (who, Angela recalls, seemed more interested in questioning Henry about writing The royle family than helping them through the process). They had a 20 minute chat and came away with some leaflets about autism. “I rang the paediatrician back to say that Johnny ticked all the boxes. She said, ‘Well take that as your

diagnosis then’. And that was it! And then nothing.” After some research – made easier by Henry’s access via work to archived TV programmes on autism – Angela and Henry decided to try an approach called Son Rise, a parentdirected, relationship-based play therapy from the US. “At this stage, Johnny was about three and he would bite, slap and kick us,” says Henry. This offered a way of looking at it that made us feel like it was more in our control.” “Rather than challenging your child to interact, you join in with what they are doing. It’s not about copying or mimicking, but enjoying it and being in the game too. Then where there is some interaction with you, like a nod or eye contact, you build on that.” Angela adds that it was also about helping the parents to think about their lives differently. “I remember there was a really difficult day when Johnny had smeared his poo up the wall. I cleaned him up, cleared it up, came downstairs and put the wash on. Then I went back upstairs and he’d weed everywhere. I remember coming back downstairs, standing by the dishwasher and thinking, ‘My life is shit’. And then I thought, ‘Okay, so this is where I am. I can either have a really terrible rest of the day, or I can decide that actually I am going to feel okay about this’. So I made that decision in that moment. It was enlightening.” GROWING UP The family used a white room with minimal distractions to work with Johnny. For seven hours every day, for four years, they and other helpers

took it in turns to spend time with him. “I’ve done a lot of things in my life and career,” says Henry, “but that’s the hardest thing I’ve ever done.” Although doing this intensive therapy was very challenging, the family’s efforts to explore any interest Johnny showed resulted in some creative approaches. “I spent a lot of that time dressed up as Mrs Goggins from Postman pat,” laughs Angela. “… Which I rather enjoyed!” Do they feel it helped Johnny? “The main thing it did for him,” says Angela, “is that he is confident and loved because all through those years, every time he looked up there would be someone there to reassure and encourage him.” After four years, Henry and Angela agreed that it was getting too hard to maintain the same level of intensity, and decided to take the techniques they were using in the room into the wider world of the house and normal life. “Even today,” says Henry, “If he has an interest in something, we’ll try to expand it using those techniques – like the painting” [he gestures to the picture on the wall behind him] “and the music that he does now.” BEING A TEAM Balancing parenting Johnny with high-profile careers hasn’t been easy. “I only work four days a week when he’s at college,” explains Angela, “and I don’t work any other time. Because I’ve had 18 years of no sleep. Johnny didn’t have a full night’s sleep till he was nine.” For Henry, running one of the country’s biggest TV comedy companies was a high-powered job, which meant he was often at work as Johnny was growing up.

YOUR AUTISM MAGAZINE

“Whenever I see him now, I just think about how much more he’s doing now than sitting in a room hitting and kicking you.” — Henry

Henry talks about feelings of guilt that he was somehow hiding at work, but explains, “The only way I could justify it was that I was earning money so that we would have facilities,” he says. “But it must be very easy for either parent in these circumstances to run off and avoid your responsibilities. I can understand why a lot of couples split up. We’re very lucky that we’ve got a stable relationship.” Angela loves being with Johnny and finds he helps her to feel grounded. “I was once with Johnny at a PECS workshop in a portakabin, and I helped them clear up at the end, sweeping crumbs off the table. Later that evening, Henry had a

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film premiere for The parole officer, which he’d written, and I ended up sitting next to Hugh Grant! I remember thinking my life is so surreal!” She laughs. “It was like Cinderella.” There are no plans for Johnny to move out at the moment, but that might change depending on how he gets on. “I do feel slightly smug with my other friends all going through the empty nest syndrome at the moment,” chuckles Angela. “We don’t need to worry about Johnny taking drugs or getting anyone pregnant!” But the future is always a worry. “You live with the fear of what will happen when you die,” says Henry.

• Henry’s latest poetry collection, Staring directly at the eclipse (Five Leaves Publications) is out now. His show about home life with autism, A normal family, was broadcast on BBC Radio 4 last year. • Henry is on our panel of judges for Autism Uncut, our film and media awards. Find out more at www.autism.org.uk/uncut.

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“We’re lucky because we made a bit of money, which we’ve put aside for Johnny. Whether anyone from the next generation will be there for him when we’re gone we don’t know. But while we’re alive and fit and able we can have a good time together.” “Whenever I see him now, I just think about how much more he’s doing now than sitting in a room, hitting and kicking you. When you first find out, you think about the things which are gone or missing, which would have been your wish fulfilment in life. Then you get to a point when you expect too little. You’ve got to find a medium where you expect something, but it’s in context and it’s reasoned – and you’re happy with what you get.” ●

FEATURE • MARILYN MISANDRY

Defiant about

diversity

Marilyn Misandry is an apostle for celebrating difference in society. Based in Manchester, she advocates for neurodiversity and the LBGT community – while also working in a call centre and moonlighting as a DJ. She spoke to us about her experiences and how far she thinks society has come. BY ELEANOR NEWLAND

arilyn self-defines as autistic. Having spent a long time getting her dyspraxia diagnosis when she was eight or nine years old, her parents decided not to go through the autism diagnostic process too. But this isn’t a problem for Marilyn. Polite, articulate and confident, she explains, “Everyone I know who is autistic has just sort of seen me and gone, ‘Yep, she’s one of us’! I don’t feel the need to pursue a diagnosis now. The only reason I might consider it would be for validation, and I kind of feel quite validated in my identity as an autistic adult without that being there.”

Growing up in the small town of Buxton, Marilyn recalls plenty of experiences of feeling different to other people. “I ended up leaving school early because of a spree of bullying there. I didn’t really feel safe when I was out in public. Before I left to go to university, we had to have police outside our house because people were throwing eggs and stuff at it. We had to have security cameras put up.” Having recently moved back to her home town, Marilyn does feel that things have improved. “I finally feel like I am safe there. There are more people who are visibly queer, visibly disabled, or visibly autistic there now. I think my generation was right on the cusp of weirdness being appreciated! Technology plays a part. I was in the sixth form when I found my first online support network. But now people are able to access this kind of support from the age of 12 or 13.” Marilyn also cites more public role models as part of the reason for better acceptance of disability and gender

difference in the past few years. “For me, a watershed moment in being trans was watching Orange is the new black. It came out just as I was going off to university. It was the first time I’d seen a trans character being important on TV. Glee helped, too. Overnight, their weird circus was suddenly the coolest thing! As controversial and awful as she is, I also think Caitlin Jenner was massive in helping to turn being trans into something much more visible to mainstream society.” But she’s not so sure about acceptance of autism in particular. “I think there’s a tolerance of certain forms of it. People notionally accept autism in the guise of savants. But nearly everything I’ve seen in the media about autism focuses more on how other people relate to us, rather than showing our individual stories.” Marilyn says she doesn’t see understanding of LBGT and autism as particularly separate issues. She explains, “for both, I think there’s a pretence of acceptance for people

“When we tell our own stories, or have our stories told, that’s what’s powerful.”

Photo © Chris Saunders / www.chrismsaunders.com/

Marilyn sees a link between autism and non-binary ideas of gender

who can pass into a normative, heteronormative or neurotypical view of the world. But those of us who can’t really do that are still on the sidelines.” Marilyn is a passionate advocate for disability being a positive thing. She feels being autistic gives her a unique understanding of the world and means she’s a part of a community. But she notes this isn’t the case for everyone. “What’s not so amazing is how people sometimes react to it. It’s important to recognise that there are a lot of people for whom being autistic is not a positive thing and who have a difficult relationship with their disability. In the circles I’m a part of, I think there can be too much focus on disability being wholly positive. There’s almost this fear among us of acknowledging that being disabled isn’t the most amazing thing ever. I think we have to acknowledge that, in itself, is a form of ableism.” In terms of being femme, an identity routed in a queer understanding of femininity, Marilyn doesn’t feel like she ‘discovered’ this was who she was. “I’ve been this way since I was born! I’ve always gravitated towards quite flamboyant and feminist expression. I’ve discovered terms and concepts that explained it to me as I got older. But I’ve always known I wasn’t

“People in the autistic community are really accepting and queerfriendly, which is brilliant.” average.” Marilyn believes there is a link between autism and non-binary gender identities. “I think a lot of the more rigid ideas of gender are rooted in neurotypical approaches to it. I view my understanding of gender as being a logical, autistic one.” Within the autistic community, Marilyn says she has seen less homophobia and transphobia than anywhere else. “Obviously there is the odd exception, but generally I’ve found that people in the autistic community are really accepting and queer-friendly, which is brilliant.” Having supportive friends and family around is something Marilyn really

values in adult life – particularly as she found it hard to find friends growing up. “My mum is really proud of who I am. I think my dad was a little reticent at first. But they are both great with it now. When I was younger, I gravitated towards the other kids who got really bullied, which isn’t really a great way to form friendships! We didn’t have much in common. It was like, ‘so, people hate you, people hate me – let’s get on!’” she chuckles. “But now, I’m lucky I have a really great circle of friends with shared interests, and they accept me for who I am.” ●

Find out more • Find out more about what Marilyn’s up to at marilyn-misandry.com. • If you’re a parent and thinking about talking to your child about sex and puberty, you can find advice at www.autism.org.uk/sexeducation. • Support our campaign to improve public understanding of autism. Visit www.autism.org.uk/tmi.

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FEATURE • NICKY PRIEST

Breaking down stereotypes on stage Nicky Priest, autistic comedian and actor, talked to Flynn Hagerty about his latest role for the Royal Shakespeare Company, and the help he receives at work.

e need compassion, even in a world in which it’s not given very often. That’s the subject of Anders Lustgarten’s new play, The Seven Acts of Mercy, which premiered at The Royal Shakespeare Company’s Swan Theatre last November. Set in 1606 Naples and modern-day Bootle, it takes its inspiration from Caravaggio’s painting – his first after fleeing Rome, wanted for murder. In deprived Bootle, shredded by poverty and decades of decline, the dying Leon is teaching his grandson Mickey about art, including Caravaggio’s masterpiece. Wishing to make those acts of mercy come to life, Mickey offers shelter to two siblings, Jennifer and Danny, among other acts of kindness. It is implied that Danny is autistic, and the Royal Shakespeare Company wished to cast an actor on the autism spectrum. Enter Nicky Priest, a Birmingham-born comedian, actor and autism advocate. “I had above average IQ for a baby, but I had trouble speaking,” explains Nicky. “When I was at primary school, I was intelligent but I was falling behind and losing concentration. My mum said something was up and I was provided learning support.” He was diagnosed

with Asperger syndrome at the age of 12. Throughout school, Nicky always knew he wanted to be on stage. “I’ve always loved being a performer, to be honest with you,” he says. “I’ve loved it since I joined the drama club at school, and I studied theatre along with media at university. I love being creative and I relate to a lot of characters, even nonautistic ones.” Being an extrovert helped Nicky to get along at school. “I always had to have help, but I cracked on and

conversations. At the same time, I took it to have good relationships with teachers. They treated me like a young adult because I thought and talked like one. We’d have a chat in the playground, even about stuff outside of school!”, says Nicky with a laugh. Nicky would be acting in real life, as if he was a performer playing a part. Nicky likes to look at his Asperger syndrome positively. He’s a proud autism advocate, and he uses his stand-up comedy career to break down stereotypes about autism. “I’ve always had a good sense of humour, and I like to take the mickey out of people who have negative stereotypes of autism in my comedy. It shocks people when I tell them I’m autistic, but I want to change the wrong and very outdated myths about autism,” says Nicky. Opportunities for autistic actors don’t come along very often, and Nicky has focused on excelling in his role. “What’s fascinating to me is putting myself in my character’s shoes. I need to know what they’re about, where they come from and so on,” he says. “I consider myself a bit of a method actor.” To help him develop his career, Nicky has worked closely with the Birmingham organisation BecauseWeCanCanCan, who specialise

“I’ve always had a good sense of humour, and I like to take the mickey out of people who have negative stereotypes of autism in my comedy.” — Nicky

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worked hard. I was a bit of a swot – I never got detention! I was always good with accents and impressions, and that really helped me to become popular,” he says. Being well-liked at school and enjoying drama wasn’t just a means to an end for Nicky – it helped him to improve his communication skills. “I thought if I was popular, I’d have to interact with people. I took it as a chance to train myself to interact and become better socially by having

NICKY PRIEST • FEATURE

Nicky in rehearsal

All images © Ellie Kurttz

in supporting emerging young artists with learning disabilities. In rehearsals at the Royal Shakespeare Company, he’s been aided by Bethan Ball, a creative enabler at BecauseWeCanCanCan. “What I do is make sure Nicky understands everything, where to go and what to do – a bit like a PA,” says Bethan. “The director sometimes gives instructions and I’m there to explain or show things to Nicky in a different way, to help him process what the director means. Danny is a new character and we’re still devising it. “It’s not about being patronising, but just being there. There’s a stigma that I might be Nicky’s carer, but that’s not what I

YOUR AUTISM MAGAZINE

FEATURE • NICKY PRIEST

Being autistic himself gives Nicky real understanding of the character

am. He genuinely doesn’t need that. Rehearsals get more intense as the weeks go on, and I’ll be around for the first week of performances. I know the ways to chat to him and keep him engaged, and being a familiar face really helps,” says Bethan. TREATED AS AN EQUAL Nicky’s become one of the gang on the set, which is all he ever wanted. “I don’t know if they know, but they don’t treat me differently due to my autism. They treat me like a regular member of the cast. They see the professional alongside them, the actor, comic, human being,” says Nicky. Both Nicky and Bethan feel the cast, crew and director have matched well with Nicky. The Seven Acts of Mercy is about compassion, and that’s what The Royal Shakespeare Company has shown Nicky. “They’ve been so helpful, scheduling an induction day for us to see the set and meet the director, and they’ve been really flexible,” says Bethan. “They’re showing integrity in casting and valuing that Nicky has a really deep

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understanding of the character, shedding more light than just reading lines off a script.” Nicky’s not stopping here. He’s setting his sights higher as an actor and an autism advocate – perhaps being The Greatest of All Time. “I’m already a professional actor, but I wanted to become a bigger actor, a bigger standup comedian, and a civil rights activist for autism. I want to be a similar activist to Muhammad Ali!” ●

ABOVE Bethan isn’t a carer – she’s there to support Nicky to work at his best.

“I’m there to explain or show things to Nicky in a different way, to help him process what the director means.” — Bethan Find out more

• The Seven Acts of Mercy runs until 10 February at the Swan Theatre, Stratford-upon-Avon. • Follow BecauseWeCanCanCan on Twitter at @bwccc_company #cancancan • The Autism Uncut awards are honoring journalism, TV, film and other media that have improved autism understanding. Visit www.autism.org.uk/uncut to vote for our People’s Choice Award.

FEATURE • MY STORY

Chrissie described Zack and his twin sister Amber as her miracle babies

My story

Chrissie Mental health nurse and mother of five Chrissie Lowery talks about her struggle to get the right education for Zack, and how he’s inspired her to found her own company.

round 15 years ago, I managed two residential homes for autistic adults who had varying levels of communication and functioning. Looking for a job change, I then decided to pursue a nursing career and I trained as a mental health nurse. My last position was a clinical specialist nurse, nursing extremely damaged children.

& Zack

I have five children altogether. I’ve got Jamiee who’s 29, Mollie who’s 16 and then the twins are next, Amber and Zack, 11. Finally there’s Jaycob, who’s nine. Zack and Amber are my miracle babies. They arrived three months early and survived against all the odds. They had congenital CMV, a virus which is a major cause of special needs, deafness and blindness in children. They were a few years

The school Zack attends now knows how to support him

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old when the CMV left them. They were both behind in their milestones because they were early. They had so many health issues and difficulties, but Zack’s behaviour wasn’t really an issue until he got to school. STARTING SCHOOL At five, Zack started to show difficulty with communication, distress and anxiety at school. He used to say that the classroom sounded like a herd of elephants – which was of course due to his sensory sensitivity. He was obsessed with water, so he used to run off to the bathroom during the school day, and that was a problem for the staff. He couldn’t help it. He liked Blu Tack too, but they took it away and he ended up trying to climb up radiators and shelves to get it. In the end, he was excluded because they thought his behaviour was too dangerous. Unfortunately for us, we lived in a small village with people who had very little knowledge of special needs. Zack was quickly labelled as a naughty child. He spent most of his time at school either rocking under the tables, trying to run away or locking himself in the bathroom. The headmistress was also the SENCO. In the beginning, she said that Zack might have an anxiety issue, but she didn’t follow up on

MY STORY • FEATURE

“We lived in a small village and Zack was quickly labelled as a naughty child.”

Chrissie founded Snugglebedz to help other families like hers

it. Obviously, I drew on my own work experience. I knew the signs of autism. I could see he had obsessions, that he took a while to hear what you were saying and that you had to repeat yourself. But she didn’t listen. I ended up making him some visual communication tools myself. It helped for a while, but I don’t think the teachers were on board. I think it was a judgement thing. I’m a single parent with five children. I was really ill at the time as well, with arthritis and fibromyalgia (a condition that causes pain all over the body), and I eventually had to leave my nursing career.

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Parents have to go through things like this and battle for their child. But they shouldn’t have to. It’s hard enough at home. Eventually, I went to my GP and he quickly referred me to a paediatrician. Zack was diagnosed with autism when he was eight. He now attends a different school along with his siblings. His current school has an attached centre called Merlin’s – so if he feels stressed or uncomfortable he can just go there. The teachers don’t put demands on him because he has pathological demand avoidance (PDA). They discovered his PDA straight away

and they know how to get him to work. Since Zack’s been there, he’s so settled. He is a very different child now – a happy, contented boy who loves life. Outside school, he loves computers, especially Minecraft. When he’s older, he wants to be a YouTuber. A NEW CAREER When I became unwell, I was pretty much housebound and spent a year on the sofa. The internet became my only contact to the outside world and I joined lots of support groups. During this time I discovered a group where people shared ideas

MY STORY • FEATURE

for items you can make at home. I taught myself to sew using my mum’s sewing machine and my company, Snugglebedz, was born! It has changed my life and has given me a new purpose and focus. Zack inspired me. He used to be up until four or five in the morning. He would flood the bathrooms and then try and find things to snuggle up with. He’s very tactile so he’d fill his bed with toys. Taking them away was a problem, leaving them there was a problem too. He just wanted to snuggle up. He’d wrap himself in his coat because it made him feel safe. I made a bed for him, using his favourite superhero fabrics, and he rolls himself up in it every night. Now, although he won’t sleep all night, it’s a lot better and he’s usually asleep by ten. I now have a Facebook page and I’m about to launch my website and online shop. I’ve sold lots of Snugglebedz, some to families who have children on the autism spectrum and/or special needs. I also have a sensory bed, which is in the design stage intended, for special schools, centres and residential homes. I’m applying to go on Dragon’s Den to secure funding for that. Along the way, I’d love to use my business to raise autism awareness in primary schools and to educate the general population so parents can get early intervention.

children at his school in the same position and we’ve all been refused. There’s no other place for him. I’m going to have to appeal it. I had to do all this appeal stuff when I was ill and it’s all going to happen again.

“I have to fight for Zack. But I’m a born fighter.”

I was led to believe you put the school you wanted on the EHC plan and that would be enough. We’ve all got together as a group and have talked about it and we’ll probably have to go to a tribunal. I have to fight for myself, I have to fight for Zack. But I’m sure it will be all right. I’m a born fighter. ●

Zack inspired Chrissie’s business idea

THE NEXT CHALLENGE Zack’s happy and settled at his new school but I’m really worried about him going to secondary school. The school that’s right for him have just said no because they’ve got a large intake of children with special educational needs. There are five

Share your story

• Find out more about PDA at www.autism.org.uk/pda or by contacting the PDA society at info@pdasociety.org.uk. • Would you like to share your story about any aspect of life or work on the autism spectrum? Please email YourAutismMag@nas.org.uk or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG, and we may feature you in a future issue.

YOUR AUTISM MAGAZINE

ADVICE • CHALLENGING PIP DECISIONS

Challenging Personal Independence Payment decisions Personal Independence Payment (PIP) is the benefit for adults who need support with certain day-to-day activities. If you think your claim has been dealt with unfairly, read on for advice about how to challenge it. BY J A N E O W E N - PA M , S O C I A L W E L FA R E A D V I C E T E A M

You need to receive a decision letter before you can challenge it

e’ve been hearing from a lot of people recently who are having to challenge decisions about their PIP awards. Most people are successful in getting the decisions overturned, but it can be complex. Challenging the decision is a two stage process; first you have a ‘mandatory reconsideration’ and then an appeal. This is a guide to the mandatory reconsideration stage. If you have been awarded some PIP, but believe you should qualify for a higher rate, it’s vital to bear in mind that whenever you challenge a PIP decision, they can review the whole award. It’s possible that you could end up losing the award that you currently have. Be cautious and consider how strong your case is for being awarded enough points to get a higher award.

The decision letter

When a decision is made about your entitlement, the PIP office must post you a decision letter. You need this letter before you can proceed.

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“If someone from the PIP office calls you to discuss your challenge to a decision, you don’t have to speak to them if you don’t want to.”

Requesting a mandatory reconsideration

To challenge the decision, you must ask for a ‘mandatory reconsideration’. This is an internal review of the decision. You can request this by phone, but it is best to do so by letter if you can. You must make this request within one month of the date on the decision letter. Don’t worry about having to say everything you want to say at this point, the deadline is just for asking for the reconsideration. You can send more information in later.

In your letter, you must: • give your full name, address and national insurance number

• say you want a mandatory reconsideration of the PIP decision, and give the date on the decision letter • ask them to send you copies of all the evidence used to make the decision • say that you disagree with the decision because you don’t think that they have properly understood your difficulties and support needs.

Further information and evidence

Have a look at the points criteria which you can download from www. autism.org.uk/pip. Identify what points should have been scored and

It’s best to put everything in writing if you can

You don’t have to send all your evidence at once

write a letter to PIP listing these points with an explanation for each one. You don’t have to repeat everything you’ve already told them, just a summary. If you have time, include this information with your initial letter asking for the reconsideration. If not, send a second letter in later. The PIP office might try to ring you to talk about the mandatory reconsideration. You don’t have to speak to them if you don’t want to. If you want to tell them anything it is better to do so in writing. Send in any information that you can that backs up the points you’ve made. Any sort of information can be relevant as long as it relates to the points. You may have already sent in all the available evidence, in which case it’s still possible to get the decision changed by challenging how they have interpreted the existing information.

the assessment 4 Seeing report

We recommend that you ask the PIP office to send you copies of all the evidence that they used, including the full report produced at the faceto-face assessment (if you had one). When you receive your copy, read through it carefully and write to PIP noting all the errors, omissions, and inaccuracies. Poor quality assessment reports are often the cause of the incorrect decision, so it is important to see the full report and point out the mistakes.

The mandatory reconsideration decision

When the PIP office have carried out the reconsideration, they will send you a new decision letter. If the decision is still incorrect you can appeal.

“Poor quality assessment reports are often the cause of the incorrect decision.”

Find out more • For more advice contact our Welfare Rights Adviser Jane Owen-Pam at welfare. rights@nas.org.uk or by calling our Autism Helpline on 0808 800 4104 to book a call back. • You can also write to Jane Owen-Pam, The National Autistic Society, 393 City Road, London, EC1V 1NG. • Get more information about PIP at www.autism.org.uk/pip or by calling our Helpline.

YOUR AUTISM MAGAZINE

ADVICE • DISCLOSING AT WORK

Should I disclose my autism at work? Deciding whether or not to disclose is a very personal, and often highly emotive decision that will often be influenced by how the person feels and thinks about their diagnosis. But it’s important to understand the pros and cons of disclosing. B Y C AT H E R I N E L E G G E T T, E M P L O Y M E N T T R A I N I N G T E A M

eople view their autism diagnoses differently. Many have difficulty accepting it, feel ashamed or embarrassed and worry about being negatively stereotyped. But many others, for example those diagnosed later in life, might feel a great sense of relief at being able to attribute their traits to autism or Asperger syndrome, meaning they are keen to disclose. It’s often hard to understand the benefits and drawbacks of disclosing

a disclosure if it has a high staff turnover, doesn’t have embedded processes for supporting people with additional needs, or hasn’t invested in training managers and HR staff on how to support an autistic employee. On the other side, signs that an employer will be more supportive include a ‘visibly’ diverse workforce with formal recognition, campaigns and awards for equality and diversity, a low staff turnover, or investment in supporting their

“Before deciding, do a benefits versus drawbacks analysis, with support from a trusted friend.” at work, or when applying for work. It can be hard to guess whether your employers and colleagues will understand, and whether your disclosure will be met positively.

What type of employer are you dealing with? Firstly, it’s worth thinking about what the employer is like. An employer or workplace may have a less supportive environment towards

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diverse workforce. Bear in mind that in some circumstances, your manager might need to tell other employees about your diagnosis – in relation to health and safety matters, for example.

What are the benefits of disclosing?

Employers are legally obliged to support you Your employer has a legal obligation

under the Disability Discrimination Act to make reasonable adjustments – before and after your application. An employer must consider making ‘reasonable adjustments’ if they become aware of your disability, if they could reasonably be expected to know you have a disability (if you’ve told them at any point, or someone else working for them knows), if you’ve asked for adjustments, or if you’re having difficulty with any part of your job.

Examples of reasonable adjustments In communication, using a preferred method (email rather than phone, for example), reinforcing instructions in writing, and giving clear and honest feedback. In the workplace, providing checklists, giving advanced

“Disclosing was so liberating”

Case study Drew, 24 Analyst and Pride Partner at Nationwide Building Society, Swindon

Knowing what kind of employer you’re dealing with is vital

warning of any changes whenever possible, and providing structures like timetables and plans. They might also include getting autism awareness training for staff, arranging for workplace support or a specialist job coach, and adapting your role to suit your strengths. The employer makes the decision on whether an adjustment is reasonable or not. They will think about things like practicality, resources, effectiveness for you, and impact on the health and safety of others.

Better understanding from your colleagues and manager Once you’ve disclosed your autism, in theory your colleagues will understand your behaviours, motivations or reasons for behaving the way you do in certain situations better. There should be fewer

misunderstandings. For example, if you choose not to go to a noisy and busy social event, your colleagues will understand it’s because of your sensory differences, not because you don’t wish to socialise with them.

The relief of not needing to hide your autism Not having to spend as much effort hiding your autistic traits or coming up with excuses to hide the true reasons for your behaviour and preferences may leave you with more energy to do your job. It may also lead to improved wellbeing from no longer needing to ‘pretend’ you are something that you’re not.

What are the risks of disclosing?

Lack of understanding and adjustments

“I disclosed my autism quite early on during my job interview. I opted to do it then as I hoped to impress them with my personality to the extent that my autism didn’t matter. I simply didn’t trust the companies that I worked for before that. Retail is a high-turnover sector, and I was sure I’d never get my foot in the door if they knew. Either that, or once they knew they’d try and get me dismissed for being too difficult. I’d spent four years hiding that I was autistic and disclosing was a hard decision to make. But in the end it was so liberating. Above all, it was the relief of knowing that I was finally being myself. Disclosing has opened up so many avenues for me, like being able to offer help to those who need it. But it’s not just about the good Samaritan stuff. As much as I love doing all of that, the best bit is the confidence it has given me. Now I can also talk about how I want to be treated. Sometimes you have to be patient with people who aren’t autistic, and don’t get me wrong – I know just how hard that can be. When you disclose you will find many people in the workplace who don’t understand you, but will want to.”

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research or take an interest in autism in the same way you do.

How to decide, and what to do

Get help from a friend or specialist when making your decision

“Your employer has a legal obligation to make reasonable adjustments.” It’s easy to assume that disclosing will be enough to ensure you get the right reasonable adjustments. But many employers simply won’t know where to begin to gather information, or who to turn to for specialist advice on what reasonable adjustments to make. An employer might ask you what reasonable adjustments you need. You might be able to self-advocate. But many employees may not feel confident asking for adjustments, or be confused about what they can ask for. They may want to avoid being seen as a ‘problem’ or as getting special treatment, especially if the workplace is fiercely competitive, or if there is a restructure going on.

Prejudice as the result of being ‘labelled’ If you have an employer who

doesn’t understand the extent and nature of your disability, you could be misjudged. For example, you might be underestimated for tasks, miss out on promotions – or even downgraded. It can be especially hard to disclose if you’ve worked somewhere for a long time and only start having problems as a result of a major change, such as a restructure. By that point, colleagues and managers may have fixed ideas about your motives or reasons for behaving in certain ways which they will find hard to change.

Lack of understanding from your colleagues Although most people are unlikely to, there’s a chance disclosing will mean your colleagues exclude you more, or aren’t interested. It might be hard to see why they aren’t interested, or why they don’t

To help you decide, do a benefits versus drawbacks analysis, with support from a trusted friend, colleague or adviser. You could also seek advice from a specialist such as our charity, or Access to Work. To prepare, use a template to outline your strengths and the differences that are causing difficulties for you at work. Include ideas for adjustments in the areas of communication, the environment and social interaction. Then discuss with your employer (usually your line manager and/or HR) what you do want, and don’t want, your colleagues to know. For example, you might not want them to know about your anxiety medication. But it may be helpful for them to know you need different lighting at your desk. Also agree who will be told. Consider telling people you communicate with regularly, or share an office with. It may not be important to tell people you have no regular contact with. Discuss how those people will be told and who will tell them (in a meeting or by email, for example). You may prefer a trusted colleague to disclose on your behalf. Make sure they have all the information they need – creating a disclosure document might be useful. Keep a written record of what you’ve agreed about these things in case you need it later.

Further help

• Get advice from our Employment Training Team. Email: training.enquiries@nas.org.uk or call 0141 285 7117 • Read advice for people looking for work or in work at www.autism.org.uk/ tmi/work-advice

YOUR AUTISM MAGAZINE

If you find socialising hard, getting support in writing via email can be helpful

Spotlight on

e-befriending

How can our charity help you? E-befriending Manager Tanya Tennant explains the benefits of our e-befriending service.

hat is e-befriending? E-befriending is a way of providing online social contact and companionship. Anyone over the age of 12 with an autism diagnosis can apply for an e-befriender, or their parent or sibling can apply on their behalf. Who are the e-befrienders? E-befrienders are volunteers (16+years) who are recruited, trained and checked by us. They are not experts in autism, but are trustworthy, willing to learn and sensitive to the needs of others. Two references are taken up for all volunteers and a DBS (Disclosure and Barring Services) check is made for those who are matched with children under 18. What are the benefits? E-befriending gives people the enjoyment of developing a new relationship outside of the immediate family. It can help people to develop their communication skills and to

share information around special interests. The process can increase self-confidence and self-esteem. Conversations often provide a high level of mentoring support to befriendees around, for example, accessing the community, friendships, employment and housing. Some matches have continued for years. What are the advantages of e-befriending over actual befriending? The biggest advantage is for those who find it difficult to access the community or socialise with others. E-befriending lets you connect with other people from the safety of home. We also support many who find their emotions and personal relationships overwhelming and find it comforting to share these feelings with their befriender who can then offer advice to seek face-to-face support. What is the best thing about running the scheme? As someone who is autistic, I struggled

with emotions and friendships when younger. I would have loved to have someone to speak to when going through those difficult teen years. Written communication has always been easier for me; it means I don’t have to work so hard to understand the meaning behind facial expressions, body language and people’s agendas. I can imagine this is the same for many of our befriendees.

“I’ve become less nervous and emotional around others. I think talking with my e-befriender has helped with that.”

— young person who used the service

Did you know?

You can contact us for an application form at e-befriending@nas.org.uk or 02920 629314. Your form gives us key information, such as your likes, dislikes, interests and goals. We use this information to match you with an e-befriender.

YOUR AUTISM MAGAZINE

RESOURCES

Life, Animated

Giveaways

DIRECTOR: Roger Ross Williams WRITER: Ron Suskind CAST: Ron Suskind, Owen Suskind PRODUCERS: Roger Ross Williams, Julie Goldman AVAILABLE: UK DVD release date TBA VERDICT: A brilliant, positive coming-of-age tale. LIFE, ANIMATED is an extraordinary new documentary by Roger Ross Williams about the Suskind family and their journey with autism. Ron Suskind is one of America’s most famous journalists and when his son Owen stopped speaking at the age of three, the family searched for answers. His only pastime seemed to be watching Disney films. That love turned out to have a more profound impact on Owen than the Suskinds could have ever dreamed: they were giving Owen a window into the world, teaching him to read and allowing him to understand complex emotional situations. Owen’s journey with Disney and his family is illuminated by Williams using brilliant animation, Disney clips, interviews and fly-onthe-wall footage to tell of how Owen Suskind became, in his own words, a proud autistic man.

Read an interview with the Suskind family on Your Autism Extra. Log in at www.autism.org. uk/digitalyam

To win a copy of The guide to good mental health on the autism spectrum by Jeanetter Purkis, Dr Emma Goodall and Dr Jane Nugent (Jessica Kingsley Publishing) email YourAutismMag@nas.org.uk with your name by 8 March quoting ‘mental health’. The winner will be announced in the next issue. The winners of last quarter’s competition to win a copy of Fitting in by Colin Thompson are Amanda from Merthyr Tydfil and Dawn from Bexleyheath. Congratulations!

Become a reviewer

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

Reviewed by Flynn Hagerty, Senior Editor at The National Autistic Society

Our six favourite… activities to do at home this half term

MAKING MUSIC Making music together can be a great way of communicating in non-verbal ways. Try using simple percussion instruments, such as those available from Spacekraft www.spacekraft.co.uk.

EXPLORE NEW SENSORY EXPERIENCES Make a sensory box containing varied and new textures, or get a new toy or tool like a fiddle kit or fibre optic light. Rompa has lots of choice at various prices www.rompa.com.

BRING OUT THE BOARD GAMES Playing board games such as Scrabble, Guess Who?, Connect 4 and Snakes and Ladders can help to develop skills in listening, observing and turn-taking.

Our six favourite continues onto page 45

YOUR AUTISM MAGAZINE

RESOURCES

Do lemons have feathers? One man’s approach to his gift of autism AUTHOR: David Burns

More than words handbook AUTHOR: Fern Sussman PUBLISHER: The Hanen Centre PRICE: around £55 VERDICT: A useful starting point for supporting your child

PUBLISHER: Mastersafe Limited PRICE: £8.99 VERDICT: A relatable and honest guide to being an

autistic adult DIVIDED UP INTO short sections devoted to different stages of life, this book was easy to dip into. It’s written in a very cando, optimistic fashion, and is filled with all sorts of helpful tips, acknowledging the low confidence and self-esteem that autistic people often suffer from. I liked the little summaries at the end of each chapter. There are times when the book meanders, and a couple of the more abstract points went a little over my head. I’d describe this book as one man’s experimental travels in tackling problems in a neurotypical world, shifted into a different gear. It encourages you to realise making mistakes is an important process in life, and to take them as positive experiences from which we can learn and adapt.

THIS BOOK IS aimed at parents of autistic children who are under six years old. Part of a wider programme and approach, it uses lots of pictures, case studies and examples to break down and explain autism simply and the associated communication difficulties. The book suggests acronyms to help remember the strategies to support your child and includes lots of practical suggestions, working through the challenges that families of autistic children may face. It focuses on using everyday activities to develop speech and language skills. This is great as a first book for understanding how best to support the communication of your autistic child. Reviewed by Stu Ferrol, Your Autism Magazine reader

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

Reviewed by Nathan Gittens, Your Autism Magazine reader

SHARE SOME SCREEN TIME If your child has a favourite computer, phone or tablet game, take some time to learn a bit about it and join in. Taking an interest in their hobbies is a good way of developing relationships. Find more communication advice at: www.autism.org.uk/tips.

TRY A NEW SPORT OR ACTIVITY Whether it’s swimming, walking or cycling – why not find a new way of getting active together? Staff at your gym or leisure centre can get specialist training on autism from our charity. Learn more at www.autism.org.uk/active.

MAKE SOME PLANS FOR WAAW The biggest week of the year for raising awareness of autism is next month! There are loads of ways to join in, from baking, to quizzing to running. Find out more at www.autism.org.uk/waaw or call 020 7903 3570.

Find more ideas at www.autism.org.uk/toys.

YOUR AUTISM MAGAZINE

HETTIE’S STORY

I’m an… award-winning swimmer 12-yearold Hettie Chambers loves to swim. Her autism can make life very hard – but she’s achieving amazing things, with the support of her family. BY ALICE TODMAN

ettie first started swimming when she was four, and began competing at the age of ten. “Swimming makes me feel like all my worries are behind me,” says Hettie. “I can just focus on that moment in time when I’m in the pool. When I’m in the water, I feel free.” Hettie’s favourite event is freestyle and she likes 200IM and 200free best. Paralympic swimmers Ollie Hynd and Stephanie Millward are among her role models. Getting diagnosed wasn’t straightforward. Having escaped from a domestic violence situation with her mum and three sisters, Hettie was originally diagnosed with PTSD. The autism diagnosis came later. Her mum Sallyann says, “I always knew she was a little bit different. She had difficulty sleeping, was very impulsive and hyper, and food was tricky. Eventually CAHMS suggested autism and suddenly everything made sense.” Hettie’s diagnosis took almost three years. “Autism means our lifestyle is different,” adds Sally, “but that’s okay and we love her so much – she’s my little girl.” Now, having just won the Youth Participant Award at the ASA (Amateur Swimming Association) National Awards, Hettie says, “It makes me feel proud, because I can look back at it in the future and agree with myself when I think that hard work was worth it. I’d like to get to the Olympics, but I don’t want to sound big-headed.” “Swimming is Hettie’s respite,” says Sallyann.

“When she gets in the water her whole persona changes. It’s a release.” But there are some challenges too, particularly around competitions. Sallyann and Hettie do a lot of advanced planning to make sure things go okay. “Hettie gets very stressed. We have to desensitise unfamiliar pools or centres and make sure there’s nothing unexpected. We’ve just entered the fastskin domain, which means costumes are very tight. That’s been hard for her sensory sensitivity.” Hettie says she thinks about her autism sometimes, but does her best not to let it get to her. “My autism means I get angry, which causes me to do and say things I don’t want to and don’t mean,” she says. “I really dislike flickering lights, and my autism can make me weary and anxious, too.” Although things can be really tough, Hettie gets lots of support from her mum and sisters. “My mum motivates me, and sometimes when she doesn’t think I’m listening, I am,” says Hettie. “I just want to say thank you. I know I’m not one with words, but it means a lot to me.” “Even though you are different, it doesn’t mean you are incapable of doing anything. As long as you put in the time and effort, you’ll reach those goals. And most of the time, because we are ‘different’ we have to put in the extra little bit to get there. Believe me, I know this feeling. But keep your chin up. That bit of extra hard work could just be enough to get you where you dream of being!” ●

• Watch Hettie being interviewed after getting her award at bit.ly/Hettie-Chambers. • Read a full interview with Hettie’s mum Sallyann on Your Autism Extra. Sign in at www.autism.org.uk/digitalYAM.

SPRING 2017