Autism YO U R
www.autism.org.uk
MAGA ZINE VOL 50 – NO 1 • SPRING 2016
Bonus content online! Find out more inside
WHY WE NEED BRAIN BANKS
Dame Stephanie Shirley’s viewpoint on research
WHAT DOES ‘AUTISTIC’ LOOK LIKE?
How to up your dating game
Top tips from author Luke Jackson
Raj Singh Tattal’s stunning portraits project
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ALSO IN THIS ISSUE:
SURVIVING UNIVERSITY GETTING WHAT YOU NEED AS AN AUTISTIC PARENT I’M A...POWER LIFTER
“Now, I’m finally home” Wenn Lawson on gender transition and discovering his autism
Spring 2016 EDITOR Eleanor Wheeler WRITERS Alice Todman and Suzanne Westbury
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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 13th Floor, Portland House Bressenden Place London SW1E 5BH Tel: 020 7878 2367 Fax: 020 7379 7118 parminder.sangha@tenalps.com www.tenalps.com
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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 F RO N T C OV E R Photograph by Steve Hickey 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 2016 Spring Vol 50, 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 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.
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elcome to the first issue of the year! I hope you’ve got some nice plans to look forward to in 2016. We’ve got some really varied and interesting interviews for you this edition. We spoke to Stuart Duncan, parent and founder of Autcraft, which has been effectively acting as a global support service for autistic children (page 28). I also met Raj, whose incredible story of rediscovering his artistic talent post-diagnosis can be found on page 21. You’ll also find tips for autistic adults on dating (page 33) and surviving university (page 14). There’s advice for autistic parents on advocating for your children on page 37. Make sure you go online to Your Autism Extra (www.autism.org.uk/digitalyam) to find bonus content too.
Contents
All the best and Happy New Year!
44 Reviews
04 News 10 Research in focus 13 Readers to the rescue 14 How do I... survive starting university? 16 Feature: My story 21 Feature: Raj Singh Tattal 25 Viewpoint: Brain banking 28 Interview: Stuart Duncan 33 Advice: Dating 37 Advice: Supporting your child as an autistic parent 41 Spotlight on support: Day services 46 I’m a… Powerlifter!
Eleanor Wheeler EDITOR
Visit our Facebook page www.facebook.com/ YourAutismMagazine
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News
A round-up of the stories that affect you Dates for your diary
Fundraiser and spreader of autism understanding, Daniel
AutismCon: 5 March. A day-long convention with talks, workshops and performances. Silverstone Half Marathon:
13 March. A flat course around the iconic Silverstone race track.
Unplugged for Autism Manchester: 31 March. A unique
indie and rock night in an autismfriendly setting.
COMING IN 2016
World Autism Awareness Week coming this April Last year, a movement of people who care about autism joined us for the UK’s first ever World Autism Awareness Week and together we raised an amazing £235,395. This means we’ve been able to plan the UK’s biggest ever awarenessraising campaign about autism, which will launch on Saturday 2 April 2016. The campaign, called Too Much Information, will tell people who don’t know much about autism how overwhelming the world can be if you’re autistic. We want this new understanding to encourage people to be kinder to families living with autism and make life that little bit easier. Daniel, a ten-year-old boy with a diagnosis of autism, raised over £1,100 in World Autism Awareness Week last
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year. He also gave talks about the struggles he has faced in assemblies at two schools. Many of the teachers said they learnt more from Daniel than any training course they’d ever done. Daniel wanted to improve understanding of autism because he thinks if he had a physical disability, people would make more of an effort to accept him, but because noone can see his autism they just think he is weird or odd. Our new campaign will be working to help change these perceptions. Daniel said, “Whether you are big or small, you can always achieve great things.” Find out more about the work we’re doing this year to improve understanding at www.autism.org. uk/get-involved.
Night Walks for Autism: 2 April in London and Manchester. Teams of friends, family and colleagues take to sponsored by the streets to raise awareness and funds. Brighton Marathon:
17 April. Well-known for its buzzing atmosphere and crowd support.
London 10k: 30 May. A 10km sponsored run past some of London’s most famous sights. Prudential RideLondon:
31 July. Fast becoming the London Marathon of cycling.
Great North Run:
11 September. 13.1 miles from Newcastle to South Shields.
Nightrider:
London: 4 June | Bristol: 25 June | Liverpool: 16 July. Night-time bike rides in three UK cities.
All Aboard for Autism:
24 September. 3km walk for families and Thomas fans at Drayton Manor Theme Park.
Royal Parks Half Marathon:
9 October. 13.1 miles through central London’s parks.
Find out more at www. autism.org.uk/raisemoney.
Tom (centre) as Adam in Bula Loop
YOUNG PLAYWRIGHT DEPICTS FAMILY LIFE WITH AUTISM Teenager Tom J Page has written and performed in a play about his family’s experiences of autism. A comedy, Bula Loop follows Adam, whose dream to go travelling on a round-the-world ticket is thrown into disarray when his brother announces over dinner that he has the same plan. The production at Eastbourne College helped
raise funds for our charity, and the Eastbourne Herald called it “a sharply observed play where domestic bickering masks heartfelt pain”. Tom and his autistic brother Ben, who has always loved walking long distances, also successfully completed the Three Peaks Challenge last summer. Well done Tom and Ben!
SPRING 2016 • NEWS
SUPPORT FOR PEOPLE LOOKING FOR WORK A new, digital edition of our Finding work workbook is available now. With comprehensive guidance on finding, applying for and keeping a job, it also has activities and useful resources to help you develop your skills. Find out more at www.
autism.org.uk/finding-work.
Noah with his picture
Nine-year-old Noah’s art at Tate Liverpool Noah Marsland did
a watercolour of an X-ray hand while recovering from a severe asthma attack in hospital. As part of a joint project between Alder Hey Children’s Hospital and Tate Liverpool, a three-foot tall copy was made and put up at the gallery alongside other children’s artworks.
NEW WINS FOR DIAGNOSIS CRISIS CAMPAIGN Five months after launching our campaign to help end the autism diagnosis crisis, we’ve achieved historic commitments from the Government and NHS in England for autistic people. Thanks to your campaigning, we’ve tackled major obstacles preventing timely diagnosis and we’ll continue to push to make sure these changes really improve the situation for people awaiting diagnoses. Find out about the campaign wins so far at www.autism.org.uk/diagnosis-crisis.
Our campaigners outside Parliament in the autumn.
NEW CULLUM CENTRE OPENS AT RODBOROUGH Last month we officially opened our second state-of-the-art Cullum Centre at Rodborough, a mainstream secondary school in Godalming, Surrey. Developed alongside Surrey County Council and through generous financial support from the Cullum Family Trust, the NAS Cullum Centres provide autistic students in mainstream schools with a calm environment supported by specialist staff, so they can thrive in their school alongside their peers. Find out more at www.autism.org.
uk/cullumcentre.
YOUR AUTISM MAGAZINE
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NEWS • SPRING 2015
Ballet scholarship for talented teenager
Popular soap opera Holby City will soon be introducing Jason, a young man with Asperger syndrome, to our screens. The character, played by Jules Robertson, who is on the autism spectrum himself, will make a dramatic entrance to the show and hopefully do a great deal to improve understanding of autism among Holby City’s viewers. Tom Purser, our Community Campaigns Manager, has been working closely with the production staff of Holby City at the BBC in advance of the new character’s appearance. Our charity is committed to working with creatives and cultural producers to ensure that autism is accurately and prominently reflected in popular culture. We believe that one of the best ways to improve public understanding of autism is to make sure that the fictional portrayals we see on screen and in books reflect peoples’ true experiences as far as possible. Simon Harper, Holby City Producer, said, “On Holby we take the research aspect of the show very seriously. I’m so pleased that Jason, like the rest of the Holby characters, is funny, complex and enriching, thanks to NAS, our writers and Jules Robertson’s wonderful performance.”
James in motion
AUTISTIC ARTISTS DISPLAY WORK AT SAATCHI GALLERY
Our specialist day centre in Kent, Artrack, providing studio space and training for new and established autistic artists, has had an exciting few months. In November last year, Tony Cronk, an artist supported by the service, was announced as the winner of a national art competition for adults supported in our services. The decision was made at a closing exhibition in Camden, by a panel of judges
TV star hosts Welsh fundraiser ball Kimberley Nixon, star of Channel 4’s Fresh Meat and Sky One’s Critical, hosted a ball for 100 people in Cardiff Bay which raised nearly £7,000 for NAS Cymru. Kimberley organised the event along with her sister-in-law, Nicola, whose daughter, Sienna, is autistic. Kimberley said, “Our aim is to help ensure that more support is available to families affected by autism in Wales”.
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to be. I actually started to speak to some of the other children at class too. Dance brought us together.” After four years at musical theatre school in Chester, James is excited to be moving to London to take up his ENB place and pursue his dream of becoming a classical ballet dancer. Photo by Nicola Selby
HOLBY CITY PLANNING AUTISTIC CHARACTER
Talented dancer James Hobley, who is autistic, has won a scholarship to the English National Ballet School. The 15-year-old, who was a finalist in Britain’s Got Talent in 2011, started disco dancing when he was eight. Within three months he was doing the splits. He went on to win many competitions, despite having difficulty making eye contact with the audience. James discovered his passion for ballet after seeing The Nutcracker. He told arts website www. gramilano.com, “Dancing changed everything for me. It was like a light got switched on inside me... I had a purpose suddenly. A reason
including award-winning autistic artist and poet, Jon Adams. Last week also saw the conclusion of an exhibition at the prestigious Saatchi gallery in London, showcasing pieces created by the autistic artists who access Artrack. Darrell Hawkins, Art Coordinator at the service, said, “Autistic people see the world from a different perspective, which means many of them are really creative. It’s amazing to have this glimpse into a completely original way of looking at the world.” For more information about our services visit www.autism.
org.uk/services. Staff and supporters with Kimberley Nixon
SPRING 2016 • NEWS
Arran wants to highlight that autistic people as a group are underemployed
News in brief
RE-BREAKING THE RECORD!
ELECTION CAMPAIGN UPDATE
Longstanding autism campaigner Arran Linton-Smith is attempting to break the world record for ‘Most Brands Advertising on One Single Sportswear Item’ later this year at the Prudential Ride London cycle ride. He achieved the world record of 110 at last year’s event, but an attempt in October by the 2015 Toyota Tour de OROC to push it up to 121 is currently being ratified by Guinness World Records. Arran is taking on the challenge again in order to help raise the profile of autism and employment. He said, “I want to focus attention on getting businesses and organisations interested and committed to employing autistic people.” By the time the race comes around, he’ll have completed about 3,200 miles of training and cycling events in preparation. You can support Arran at https://mydonate.bt.com/ fundraisers/arranlinton-smith2016
This year sees General Elections in Scotland, Northern Ireland and Wales. We will be campaigning on the issues that matter to voters living with autism, such as health, social services and education. Find out more about how you can help at www. autism.org.uk/campaign.
GET SET FOR THE AUTISM SHOW
The winner of our Stik book giveaway in the last issue is Charlotte from Ipswich. Thanks for all your entries. You can read a selection of thoughts on Stik’s story including Charlotte’s, on Your Autism Extra by logging in at www.autism.org.uk/digitalyam.
FREE SUPPORT FOR FAMILIES FROM THE BANK WORKERS CHARITY If you have ever worked for a bank, or do so at the moment, did you know you can access free support through the Bank Workers Charity? Their advisors can offer grants for things like National Autistic Society membership and our books and publications. To find out more, go to www.bwcharity.org.uk, call 0800 0234 834 or email help@
The Autism Show 2016 sponsored by Hesley Group returns this year to London (17-18 June), Birmingham (24-25 June) and Manchester (1-2 July). Last year’s sensory classroom feature will be returning, now set in a secondary school environment. The event will showcase the latest information, advice, products and services to help those who live and work with autism on a daily basis. Parents and carers can also book advice sessions with specialist professionals. Book tickets at www. autismshow.co.uk. Quote “NAS6” when booking in advance to save 20% and get an additional ticket discount.
bwcharity.org.uk.
The sensory classroom feature last year Don’t miss out on getting free support
YOUR AUTISM MAGAZINE
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Research in focus Bringing you news of the latest research into living and working with autism Improving perceptions of autism among the UK public A project at Sheffield Autism Research Lab (ShARL), University of Sheffield, aims to understand how the public perceives autistic people, how autistic adults think they are viewed and to use that information to counteract unhelpful stereotypes.
Autistic adults are helping to inform the research
The project, which has several phases,
aims to reduce stereotyping and feelings of anxiety relating to the condition among the general public. In the first phase, a survey was
completed by 164 students who aren’t on the autism spectrum themselves and have no autistic family members or close friends. They were asked to list the traits that society associates with autism spectrum conditions. The ones which came up the most were “poor social skills”, “introverted and withdrawn”, “poor communication”, “difficult personality or behaviour”, “poor emotional intelligence”, “special abilities”, “high intelligence”, “awkward”, “obsessive” and “low intelligence”. All traits were rated by a second
group of students on a seven-point scale indicating how positive/negative they considered these traits to be. All traits were rated as negative apart from “special abilities” and “high intelligence”. The second phase aimed to weaken
the negative stereotypic traits named in phase one. The researchers presented video clips of “counter-stereotypic exemplars”. The people in the clips all have autism diagnoses but were counterstereotypic in that they did
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not display the four most commonly mentioned traits identified in phase one. Between watching the videos and
making the ratings, participants did a range of other tasks, were assured that all responses were anonymous and the tasks were presented by separate researchers so that participants weren’t alerted to the fact that the two parts were related. The results showed that those who
watched autism video clips endorsed the negative traits associated with autism significantly less than those who had not watched the video clips. Phase three, which is currently in
progress, involves interviewing autistic adults to try to better understand how they feel they are viewed by others in society, what they think the stereotypes are, and to identify anything particularly problematic. The researchers will then look at how they can tackle these negative aspects. Phase four is looking at how to
reduce bias and prejudice against members of minority groups by encouraging intergroup contact, imagined as well as direct. Recent evidence shows that simply imagining contact, rather than having direct contact, can have a substantial beneficial effect on reducing bias and anxiety about interacting with minority groups. To date, this strategy hasn’t been used in relation to the autism community, but could have extremely beneficial effects. Project lead Caroline Treweek said, “We have found that lay perceptions of autism can be negative and unhelpful. A key aim of this project is to advance public understanding and reduce barriers to social integration.” ● •F or further information please contact m.freeth@sheffield.ac.uk.
•O ur ‘Too Much Information’ campaign, launching in April, aims to improve public understanding of what it’s like to be autistic. See page four for more details.
research • Focus
The seminars bring together professionals as well as parents and autistic adults
App supports students with university life New, assistive technology, Brain in Hand, is designed to help students organise their lives and manage anxiety. The app, developed by the Innovation Centre at Exeter University, was trialled by our Student Support Service and the results suggest it had a positive impact on the lives of autistic students. Installed on a phone, the app provides access to personalised coping strategies which have been developed previously with a mentor. There’s also a ‘red button’ feature to request more help when needed. Meanwhile, a secure website monitors the information coming in through the app to help the developers see new issues, which solutions are working best and trends in anxiety levels. The technology was piloted with 24 students in seven universities across London over a six month
period, using a grant from the Government’s Autism Innovation Fund. A comparison of surveys of the wellbeing of 19 students at the start and end of the trial suggests the technology had a positive impact. It showed a shift in confidence with implementing coping strategies when things don’t go to plan, improved engagement with the course and a growth in confidence in communication skills. The technology has now been recognised by Disabled Students’ Allowance (DSA) funding and so is now available free for qualifying students across all UK universities. • Find out more at www.autism.org.uk/ braininhand.
Pressing ‘red’ on the traffic light function alerts the support team at our charity to get in touch.
Involving people living with autism in research decisions A series of seminars taking place across the UK is focusing on how people living and working with autism can work together to shape the research agenda. The most comprehensive review of UK autism research was carried out by charity Research Autism in 2013. The review found more than half of all UK autism research is devoted to understanding the underlying biology, brain and cognition of autistic people. However, the majority of the 1,700 autistic participants and their families consulted wanted to see more research on diagnosis, interventions, services, and societal issues, which they felt would make a real difference to their everyday lives. A new ESRC-funded seminar series is one step towards realising this goal. Six seminars are being held across the UK bringing researchers together with autistic adults, parents of autistic children and practitioners in health, education, social services and the third sector, to identify ways to create and share a positive research agenda. As a result of the seminars, the team aims to create a network of researchers, connected to communities, with the vision and tools to carry out applied research which directly benefits autistic people and their families. • More information can be found at www. shapingautismresearch.co.uk and on Twitter @autresearchuk.
Find out more or get involved • Read the autism research in the Autism journal at aut.sagepub.com. NAS members get a 30% subscription discount. • Could you support vital research work? Visit www.researchautism.net to find out more.
Y OU R A U T I S M M A G A Z I N E
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Readers to the rescue!
DO YOU HAVE A PROBLEM OUR READERS CAN SOLVE? GET IN TOUCH AND BENEFIT FROM THE EXPERIENCE OF OTHER PEOPLE LIVING AND WORKING WITH AUTISM.
For expert advice and information
installed or replaced in a jiffy! — Alistair
on any autism-related issues, call our Autism Helpline on
MY SON IS four next month, and also struggles with sleep. He too wakes for the day very early. Cerebra have a sleep service. You can find details online. They have been a great help for us, have some brilliant tips and advice and are always friendly and sympathetic. Visit http://w3.cerebra. org.uk. — Poppy
© Alamy
0808 800 4104
Disrupted sleep patterns can affect the whole family. MY SON IS nearly six and doesn’t sleep very well, sometimes starting the day at 2.30am. He’s had various medicines from the paediatrician, but none have worked and now she says she can’t prescribe anything else. Can anyone help? — Sheran MY SON HAS Aspergers and had sleeping problems when he was at about the same age. I put blinds over the window of his bedroom at night and this helped him sleep for longer. Go to an old-fashioned draper and ask for black-out material – the kind they
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use in photographic dark rooms. Cut it six inches wider (both sides) and longer than the window opening, then staple it to a length of wood. Fit keyhole shaped mirrorhangers to the latter and two corresponding screws into the window frame – the blackout curtain hangs off the length of wood and fits under the existing curtains and can be
I SUGGEST having a party, and making sure your son wins a prize of a proper football. He has to earn or win it – not just be given it. Then go to the park and have fun. The amazing body and brain need to work in order to sleep. Also, define the going-to-bed routine, such as the time to get washed and be in bed. Make sure the bed itself is comfortable and there are no mucked up sheets. Read a story for 20 minutes. Get him to visit the toilet every night, even if he doesn’t want to go. Establish the routine. Fear makes me not sleep sometimes but writing down exactly what’s making me scared, like not having paid the gas bill or losing my library book, helps. — Ken
Help me next!
How do I motivate my adult daughter to seek a job? If anyone has any ideas, I’d love to hear them! — Parent 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 content to be published. We reserve the right to edit submissions.
How survive starting do I? university? If you’re considering applying to or taking up a place at university later this year, the unknowns can be really worrying. Will you make friends? Will the course be right? Should you disclose your diagnosis? We asked an autistic journalist who started his course in the autumn to provide some top tips for beginning student life.
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BY NICHOLAS FEARN
n September 2015, I faced one of the biggest challenges of my life: starting university. I had been preparing for this major step in my life for years, but due to the fact I’m diagnosed with a form of autism, I was worried I wouldn’t be accepted or make any friends. I’ve been studying at Swansea University for a few months now, and I can honestly say the worst hasn’t happened at all. I’ve got a great friendship group and, overall, I am loving the uni experience. If you’re on the spectrum and thinking of going on to study at university in September or in the foreseeable future, here are some of the things I’ve learnt that should hopefully make your life as a student a lot easier.
DON’T THINK ABOUT THE NEGATIVES
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That may sound easier said than done, but trust me: there’s no need to think of the negatives before starting university. It only makes you feel depressed and can put you off taking this enormous step in your life. I completely get that it can be hard if you have a form of autism, like me, but you must try. Really, you ought to focus on the positives. By going to university, you’re investing in your future and have the chance to learn more about yourself. I’ve benefited hugely from the experience so far. I never thought I’d be able to make friends with people who generally like and understand me. However, I have. Uni is such a diverse setting, with all-sorts of different people around you, so it’s likely you’ll fit in somewhere!
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YOU DON’T NEED TO LIVE IN HALLS TO EXPERIENCE UNI
If you’ve done your research, you’ll have read plenty of stuff saying you won’t get the full university experience if you’re not living in halls. This isn’t true at all. University is what you make of it. I decided against living in halls because I wanted to live at home, where I feel most comfortable. But I haven’t let this hold me back. I’ve had a ball so far and have been able to make so many friends by joining different societies and clubs. They give you the chance to meet like-minded people who you’ll come to admire and respect. I’ve been working on the student newspaper and have had loads of fun. Not only have I been able to fill my thirst for writing and journalism, but I’ve been able to make friends with people with similar interests to me. You can have that too, and you needn’t be living in halls.
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HOW DO I? • FEATURE
BE ORGANISED
NEVER FEEL PRESSURED
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University truly is a life experience, and as a student, you’ll no doubt find yourself in new social settings. And while it’s important to try out new things, you should never let yourself feel pressured into doing things that make you feel uncomfortable. For some, being a uni student is all about drinking excessive amounts of alcohol. You’ll most likely come across that sort of student and will have the chance to go to parties during freshers’ week, but it’s not the be and end all. While I do like a drink now and again, I wouldn’t say I’m a party animal. Yes, I’ve had the chance to go out drinking, but there have been times when I’ve said no because I didn’t fancy it or had loads of work to do. All your friends can do is respect your decision.
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As part of my autism, I can become overwhelmed if things aren’t organised and I’m not aware of what I’m doing. At university, things really are quite hectic. Along with learning how to be an adult and have a good social life, you have your studies – which means loads of lectures to go to and assignments to complete. You can easily fall behind by not being organised. I’ve benefited hugely from putting all my seminar, lecture and assignment deadlines in my calendar and by setting up alarms at the same time. While that may sound a bit obsessive, it really does help and make your life easier. Of course, we’re not all the same and learn in different ways. So the best thing in my view is to keep in mind you’ll be doing a lot of studying and brush up on your organisational skills. After all, you wouldn’t want to fall behind.
REMEMBER THERE ARE PEOPLE AROUND TO SUPPORT YOU Another important thing to be aware of is the fact that there’s a lot of support on offer at university, and you should really make use of it during your time as a student. It’ll make things so much easier for you. At my university, I get support such
as extra time in exams, the ability to use a laptop in all classes and support with structuring my academic essays. You can also get funding for specialist equipment through Disabled Students’ Allowance, which you can apply for through the student finance body.
Useful resources
• Follow Nicholas on Twitter @nicholasgfearn or visit his website at http://nicholasfearn.co.uk. • To find out how to apply for Disabled Students’ Allowance, go to www.gov.uk/disabled-students-allowances-dsas. • See what student support services are available to you locally at www.autism.org.uk/students. • Get more advice on choosing, applying for, starting and leaving university at www.autism.org.uk/further-and-higher-education.
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MY STORY • FEATURE
My story
Mr Wenn B Lawson used to be Ms Wendy Lawson.
Wenn Lawson Wenn Lawson has experienced more traumatic experiences during his lifetime than anyone should ever have to cope with. But at the age of 64, he finally feels that he’s found home.
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hen I was young, I remember wearing my brother’s old clothes and refusing to put on girly ones. I much preferred traditional boy’s things. Guns, Lego, matchbox cars, slingshots. I was an outside, physical person who loved camping and animals. I’d have a knife and some bits of string in my pocket – just like in the books you read. I grew up in the West Country and used to find the local gypsies and borrow a pony to ride. There was a lot of pressure to be more like my sisters, but I was considered to be learning disabled back then (before anyone knew about my autism) so I was left to my own devices a lot. My mum was under a lot of pressure – she had four kids under four, plus my brother. Family life was pretty chaotic. I believe my mother’s autistic so it would have been difficult for her to organise the kind of structure I needed. GROWING UP As I became a teenager, I refused to acknowledge that I was menstruating. I wouldn’t wear pads which meant blood all over the place and people having to clean me up. I would tie my chest so that my breasts wouldn’t be seen. I’d not eat to avoid growing
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into this woman I didn’t want to be. At school I got five GCEs and one A level. I also did some studying to be a nurse, but I found the practical stuff too hard. By the age of 17, after two suicide attempts and a lot of self-harm, I’d been misdiagnosed with schizophrenia and put into a mental institution, as they were called then. They put me on antipsychotic medication. In those days it was Largactil, which meant I developed allergies to the sun. So I couldn’t go outside where I longed to be because I’d come out in rashes. I had to wear long sleeves and I hate the feeling of things on my arms. Neither my autism nor my gender dysphoria were diagnosed then. I was an ‘intellectually disabled’ young person, so they thought, with schizophrenia. What followed was a very dark period of my life. In the institution I was medicated, so I don’t recall much. I remember avoiding ECT (Electrical Shock Treatment) by hiding under a bush in the grounds. I’d seen others have it and they’d wake up with short term memory loss, disoriented, scared, depressed and less responsive. I also had to do group therapy where you’re supposed to hold hands. I have sensory issues so found that very unpleasant.
They let me out at Christmas, and for the odd weekend. On and off, I was in that place for over 20 years of my life. GETTING MARRIED When I was 16, I met a boy at church, who went on to become my husband. I was 20 when we eventually married. It was the youth pastor’s words that prompted us to do it. He said that we were like a married couple, and if we weren’t married, we should be. The boy also had a very nice motorbike! So we set the date. But we never really had enough of a foundation for a strong relationship. Two years later I’d had my first baby. I didn’t really understand about sex. I was three months pregnant before I knew. I was on a lot of antipsychotic medicine which is harmful for a baby, but nobody knew. I didn’t know! My husband and I were living in a community at the time but I was in and out of the mental institution and I took the baby with me each day. I would have what I later realised were ‘meltdowns’ fairly regularly when I’d forget my name and where I was. They saw them as psychotic attacks, and they’d take me in for weeks at a time to have my medication adjusted. Sometimes it would be daily pills, sometimes injections. This happened for several years, during which time I
“There is nothing cosmetic about being in the wrong body. Gender dysphoria is a real biological condition. It’s deeply ingrained in the whole of who I am.” had three more children. By the time I had my fourth child, it had improved and I was only going in occasionally. One of my biggest fears was that they would take my children away from me. I loved being a parent. So I tried really hard to do the things I was supposed to do. The family who’d taken us in helped us a lot. They often commented on how different we were, but they accepted it. When our youngest child was two, we moved to Australia, and, in my
late thirties, I decided to finish my education. First, I went back to school and finished year 11 and 12. Then, I got into a university and did a BA in psychology. I discovered a love for study and research. Around this time I was given a book called Nobody Nowhere by Donna Williams. I read it and I saw a mirror. So I asked my psychiatrist to be assessed for autism. He laughed and said there was no way I was autistic, but he suspected schizophrenia was a misdiagnosis
and he recommended I go to the Melbourne Centre for Autism, part of the Monash University programme, where I was diagnosed. It was four more years till they took me off all the medication and I was released from psychiatric care. Falling in love At this time we had a live-in au pair girl called Beatrice who moved with us to Australia. She was like an older sister to the kids. By the time my eldest was 17, I knew that I loved Beatrice and couldn’t stay married to my husband. The kids took it personally. They left home, went to live with other people or their Dad, and the family disbanded. My picture of family was from The Little House on the Prairie and The Waltons, so it was just not how it was meant to be. I got depressed and
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MY STORY • FEATURE
Wenn with his second granddaughter who is now five and is also autistic.
Wenn’s civil union with Beatrice had a couple of relapses which put me into an institution in Australia. My husband was abusive. But I didn’t really recognise that, because I’d been sexually and emotionally abused as a child and had mental health issues. Beatrice helped me understand what was happening. I fell in love with her in a way that I’d never done with my husband. She’s now my wife and we’ve been together for 32 years. She’s amazing and she’s also autistic. I never really felt comfortable with the logical explanation for this change: that because I was a woman and I loved a woman, I must be a lesbian. I just knew that I loved her. I was a prominent person in church life so being gay was an affront to all my Christian thinking. I didn’t believe in divorce. But my counsellor explained that divorce was actually a respectable funeral. She said you are married until death you do part and she helped me see that my marriage had been dead for a long time. So I got divorced and set up my life with Beatrice. Eventually all my kids came home again, and they all came round to an understanding and acceptance of who I was. My studies flourished, and I went on to do a second degree in social work and a PhD in psychology. GENDER TRANSITION At the age of 60 I came out again as a trans man. Other people knew before me. Being autistic often means a delay in understanding. And being on those antipsychotic drugs for so long
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does your head in (that’s an English expression). When I told my eldest daughter, she was amazing. She said “We’ve known for years, Mum”. I felt huge relief. Physically, changing your sex is a nightmare. It’s very emotionally, socially and financially expensive, so you have to be really sure this is right for you and committed to seeing it through. But it was especially hard for me because my psychiatrist was worried it was just a special interest. I had to see him over eight sessions
“I loved being a parent. I loved the kids. We’d all wake up at five in the morning, go out and throw pebbles and watch the ripples in the water.” Share your story
(rather than the usual three) before he gave the go-ahead. I’ve been through and continue to take hormone therapy, and had sex reassignment surgery. I’m now fully transitioned. Now, I’m finally home. It wasn’t until I was at home that I knew what home could feel like. I had a Facebook message yesterday from a family member of my exhusband. I’d written ‘Love Grandpa’ in a comment on a photo of my grandchildren (that’s what they call me now). She wrote “Those kids must be really mixed up. No amount of cosmetic changes will cover up what God made”. She has no idea. There is nothing cosmetic about being in the wrong body. Gender dysphoria is a real biological condition. It’s deeply ingrained in the whole of who I am. In the last few years, the western world has woken up to all kinds of reforms in law about gender and sexuality. Now it’s on TV, it’s more normal, and it’s harder to ignore. We need to bring it out into the light to make some of the ignorance and fear go away. There are frilly, girly girls, there are tomboy girls, there are girls who like woodwork, hairdressing, gardening, cooking – there’s a huge spectrum that’s female. But there are also girls who wish they were boys, and boys who know they’re really meant to be girls. It’s an incredibly strong thing. But it can take longer for some to connect the dots, especially if they have autism. I don’t feel resentful towards those who misunderstood me. It was just ignorance. I can forgive people doing things when they don’t know any better. It gets harder when you know they know, and they still do those things. ●
• Share your thoughts on the topics covered on Facebook. • Would you like to share your story about any aspect of living or working with autism? 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.
THE PENTACULARARTIST • FEATURE
Seeing in
black and white Autistic artist Raj Singh Tattal – aka ‘the Pentacularartist’ – is working on an exciting project about appearances which aims to question the judgement that many autistic people face. He told us about it, and how art and autism have shaped his life so far. BY ELEANOR WHEELER
I WAS AT AN exhibition talking to someone who said she worked at a special needs school for autistic children. I told her I had Asperger syndrome, and she told me I didn’t look like I did. I didn’t know whether to take that as a positive or a negative – it was just such a weird situation. She didn’t know me, she made a judgement after meeting me for a minute. That got me thinking. At the support group I go to, Adult London Asperger Group (ALAG), I started looking at the other people there and thinking about whether or not they ‘looked’ autistic. I decided I wanted to capture images to break down the stereotypes people have in their minds of how people on the autism spectrum look and behave. The exhibition will feature black and white graphite and charcoal portraits of autistic individuals and each picture will have that person’s story included below it. Most of the people are from ALAG, because from a personal point of view I want to capture what the group means to me. It has helped me put my difficulties into context. When I’m there I realise there are people who have it much harder than me, whose autism literally
affects every detail of their day. Some of the people I’m drawing have very strange, interesting faces. I don’t want to shy away from showing people’s personalities. For example, one of the pictures is of the poet Alan English. I took the photos for the portrait while he was performing his poetry. I wanted to capture that essence of who he is. I don’t care if people think, “Oh you’re making people on the autism spectrum look crazy”. He’s not crazy, that’s what he looks like when he’s doing his poetry. I was diagnosed three years ago
Raj’s portrait of Jason Why
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“My mind was really in a bubble. And anything outside that bubble was complete mayhem.” when I was 38. Looking back, I think my autism affected pretty much everything growing up. I knew something was wrong, not just because of the way I thought but because people always told me. When I was little I was the worst kid at everything. I was overweight and I never got chosen for sport. My maths is non-existent even today. But I got praised for my drawing. I’d do little pictures of Spiderman and give them out to people. I liked the satisfaction of people saying I was good. Every time I was at risk of being bullied, I could normally get out of it by drawing! Even now, when I see a kid going crazy over one of my drawings, that’s the best feeling in the world. But I always found things difficult which seem trivial for other people, even just getting up and walking out of the house. I’ve always had a honing thing: as soon as I leave the house, I’ve got to get back to my
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room. I thought I was agoraphobic for a long time. I could never really figure out what people wanted, and everyone used to say I was spoilt. I have four sisters and a brother who are older than me. They would put a lot of pressure on me to do things that were out of my comfort zone. It probably helped to toughen me up a bit. I used to throw a lot of tantrums and I was a mummy’s boy. When I was younger I was extremely close to my mum, but when I turned 18 or 19 I really went into my shell and started ignoring her. I barely spoke to her for fifteen years. Looking back, that was a really cruel thing. School was a problem. I left with one GSCE in art. I was so obsessed with art, I didn’t think I needed anything else. I didn’t turn up to any of my lessons and skipped the exams which meant I got fined. That really angered my mum. I went back to school to do some more GCSEs
The poet, Alan English
and an A-level in art. I was still very complacent and I didn’t do as well as I thought I would. That was actually a blessing, because it made me think, all right – I’ve got to actually get some qualifications. I went back to try again and did enough to get to university. After being top of my class and getting a degree in industrial design, I had to turn down a great job opportunity because it was in Croydon. I didn’t know where Croydon was, and couldn’t think how to get there for the interview. I now know it is not too far from me but my mind was really in a bubble. And anything outside that bubble was complete mayhem. So I called up the day before to cancel it, and lied that I had another job. After that I gave up applying for jobs in design, which I regret now. I was unemployed for six years. I stopped drawing.
THE PENTACULARARTIST • FEATURE
Then eventually I started a Saturday job stacking shelves at B&Q which in time led to a job as a kitchen designer there. It was only when I was working that I started thinking there was a serious problem. I see things as being very black and white. I have to rationalize everything and it does my head in. So I had problems with managers. It ended up in a tribunal case. I spent two years literally engrossed in information about tribunals. I couldn’t stop thinking and reading everything on the subject. I’d had ‘good’ obsessions, such as my art, but that was the point when being obsessive didn’t seem like much fun. I knew what I was doing was irrational, but I couldn’t stop myself. I was forced out of work and I got depressed. I’ve been depressed for most of my life but at that point I was suicidal. I was very agitated and so argumentative that I could argue with myself. It was like that for two years straight. The only things that stopped me taking my own life were that luckily I believed in God, and also because I knew it would kill my mum and my sister. I got counselling with Mind. I went to three different ones over three years. It was only when I was speaking to the final counsellor that she asked me if I’d ever heard of Asperger syndrome. I hadn’t, so when I went home, I researched it and I thought, “Ah, this is me!” After various referrals I was diagnosed relatively quickly. It’s hard because when you’re at rock bottom, no matter what anyone says to you, you’re not going to listen. It’s your own journey. Which is why whenever I see someone who is severely depressed I don’t tell them they’re going to feel better, just that I was there, and I feel better now.
“I wanted to capture images to break down the stereotypes people have in their minds of how people on the autism spectrum should look and behave.” It might happen to you too. A lot of people see me as being fine now, but I can easily fluctuate between being quite confident and extremely agitated. The only difference is now I can rationalise things a bit more and calm myself down. One piece of advice I would say is that you can develop. I’ve learnt a lot of skills. I’ve learnt to back off a bit and to stop myself from digging my own hole, to take time to calm down, and not push myself to take action when I’m in that irrational mode. The two biggest benefits of getting my diagnosis were firstly, being able to draw again after 12 years. I hadn’t really understood how far art is connected to my own psyche. I knew my obsession with drawing was part of being autistic, so I decided to use it to really push myself and make it into a great thing. The second benefit was that it meant I made a conscious decision to rebuild my relationship with my mum. That’s why I do so much Sikh artwork – it’s not for me, it’s for her. We’re much closer again now. My room is covered from top to bottom with drawings.
I live, breathe, and think about them 24/7. I think someone who’s ‘neurotypical’ can have more of a varied life but I can’t do that. Even now I’m thinking about a drawing I need to finish off. It’s always on my mind. Art can be torture, or it can be pure joy. If a drawing turns bad, I’m in complete turmoil. It’s like the end of the world and I can’t see past it. But when it’s going well, it’s pure bliss. I think that’s what being an artist is about. It’s a bit of a mixed bag, but I wouldn’t change it. ●
Raj’s first portrait, Jeremy Dunton
Find out more • To read Raj’s advice for life, more about his family’s reaction to his diagnosis, and who inspires his work, sign into the online members’ area at www.autism.org.uk/digitalyam. • See more of Raj’s artwork at http://pentacularartist.wix.com/pentacularartist or find him on Facebook. Raj Singh Tattal the Pentacularartist. • Learn more about ALAG at http://alag.org.uk, or find services near you at www.autism.org.uk/directory.
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BRAIN BANKING • VIEWPOINT
Dame Stephanie donated her son’s brain for medical research
Why I support
brain
banking Parent Dame Stephanie Shirley, who is also an entrepreneur, philanthropist and founder of The Shirley Foundation, explains why she thinks donating the brains of autistic people for medical research is so important. BY DAME STEPHANIE SHIRLEY
“WE KNOW THAT autism is brainrelated and researchers know the importance of brain banks allowing access to post mortem brains. But why should anyone sign up to brain banking, which most people find distasteful? “The Shirley Foundation founded the medical research charity, Autistica which funded the Oxford Brain Bank. I’m proud that my son’s brain is in it and he can help medicine by providing detail that you just can’t get from MRI. “I’m also proud that (Oxford being a partner) his precious brain tissue can contribute to BrainNet and similar international collaborations. It means a lot to me that his brain can help others now that it is no longer of use to him. “Control tissue from people not affected by autism is needed for comparison so my brain is scheduled to also go there on my death. Of course, it’s not easy to face one’s mortality. My tissue donation is the very last gift I shall make. “I like to be practical. When travelling, I carry a plasticised card summarising the actions to be taken immediately on death (or beforehand). Time wasted in not contacting the organisations concerned may mean
that my body cannot be used as I intend. “An autism brain bank is being planned in Canada, but only the UK, Netherlands and USA have brain tissue from autistic people. Worldwide there are only about a hundred autism brains and it’s a real challenge to get more. The UK gets only one or two brains each year. Resistance to organ donation “Personally, I hope that the law is changed so that all body parts can be harvested post mortem, subject to individual opt-out. Until that happens,
Dame Stephanie’s late son, Giles
“Some people suspect that research is a eugenics-driven attempt to eliminate autism. This is deeply misleading.”
recruitment can only be significantly improved by working with parent-led organisations. “Psychological, cultural and practical factors affect both donation and tissue collection. From potential donors and their families, yes, but professional resistance has also proved to be a major issue. No-one had anticipated how strong and widespread this negative response would be. “Brenda Nally, who was Autistica’s outreach worker, tells me that experience to-date has been that professionals who work with autistic people and their families have resisted passing information to them about research and the need for brains to be donated. Perhaps they feel that to raise the subject would be insensitive. “Some societies believe that the body must be whole and complete in order to move to whatever is considered its next phase. Most civilisations have a strong respect for the human body, whether alive or dead and practices refer similarly to organ donation as to post mortem material. British culture accepts burial and cremation but is squeamish about cutting into human bodies, perhaps especially the head. “Brains have to be removed and collected within two days of death. I saw my beloved son in his coffin after his brain had been removed. He was wearing some sort of bonnet and looked perfectly okay. A gruelling two-hour interview to capture his social and medical history included being
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VIEWPOINT • BRAIN BANKING
Reading together when Giles was a child
“People making the pitch for brain banking have to have warmth and compassion as well as science.” asked for instructions on the fate of any tissue deemed to be no longer of use. As I guess most people would, we gave consent to lawful disposal via hospital incineration. It was all very tactfully handled. “Such discussions taking place immediately after death, when families are still in shock, can be distressing. It can be helpful to speak of the deceased contributing to research and so, in a sense, living on. People making the pitch for brain banking have to have warmth and compassion as well as science. My reasons for donating “Focus groups for affected individuals and their relatives can help to determine what motivates brain donations, and what puts people off. “I understand why people have reservations: the brain being the very basis of personality, the seat of consciousness… the emotions crackling through its neurons and synapses prompt theories of mind and of the soul. “But I feel that my son’s brain being used for research gives dignity and meaning to his troubled life. It’s not just an empty loss. “Some people suspect that research is a eugenics-driven attempt to eliminate autism. This is deeply misleading. Research is needed to understand and clarify the different ways in which autism affects the brain and so ultimately improve each person’s
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quality of life. “Most families with experience of autism are very positive about supporting brain research, once they are able to gain information and appreciate how future generations will benefit. “The families of existing brain donors are equally positive about their experience of contributing to the research; nor do they come to regret their decision. “Crucially, those people with autism who have been able, prior to their death, to make an informed decision to donate their brain, have also been keenly motivated to do so.” A word on governance “Some families will want to know about governance. They seek
reassurance that post mortem tissue is treated properly – as carefully and respectfully as a living subject. “The Medical Research Council initiated the UK Network of Brain Banks and provides reassurance. Its Steering Committee has expertise in ethics and the law, as well as brain banking. As scientists everywhere are learning to do, there’s also nonprofessional representation. “Donation is not always possible – there may be medical, technical or even ethical reasons why it is inappropriate in an individual case; the decision to donate a brain is essentially personal and must never be taken under pressure. But there is a strong need for us all to give it consideration.” ●
Find out more • You can read The National Autistic Society’s position statement on brain tissue donation at www.autism.org.uk/brain-tissue-donation. If you have a viewpoint on this difficult issue, we’d love to hear it. Email yourautismmag@nas.org.uk or post on Facebook. • The Brain Bank for Autism’s Helpline number is: 0800 089 0707
INTERVIEW • STUART DUNCAN
How to
lose the fear Stuart Duncan founded video game server, Autcraft, as a safe place where autistic children can play Minecraft, make friends and receive help and support online. He told us about its creation and why what it does is so important. BY ELEANOR WHEELER
Why did you create Autcraft? When my son was diagnosed, I started a blog about autism. I got to know a lot of parents and autistic people online. A couple of years later, Minecraft got huge and they were all chatting about it, saying, “My kid’s obsessed with it, it’s so funny, he talks of nothing else”. But after a while, that amusement started changing to distress. Their kids were wanting to make friends, going onto specific servers (where you can play alongside other people) in order to do so, but getting bullied. So parents started reaching out online, trying to find other autistic children whom their kids could play with. But the way Minecraft works means you need to both be on the same server in order to be able to play together. I’ve been a web developer for about 15 years. I’m a gamer and my kids are gamers. I have Asperger syndrome myself. So I thought, they need a server and I can do servers. I know how it all works. So I started one up just for kids who have autism. I told people about it online, and it blew up really, really fast. Which parts of Minecraft do you think were particularly distressing to autistic players? It’s the same as bullying in real life. Children with autism tend to react in extremes. In a game like Minecraft, if someone does something unfair
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or upsets you, being autistic means you might react at a level which most kids would see as being overboard. Once a bully realises you really lose it when they do something that bothers you, they want to push you and see how far they can get. In the world of Minecraft, everyone can build things and you’re sharing a space with others, which means bullies can do things like destroy the houses you build, or ‘kill’ you over and over again. The worst thing is that if they do find out you have autism, they then have another angle to attack you with, and some bullies say really horrible things. What makes Autcraft autismfriendly? There are a few key things which
make it a safe space for autistic kids. First, bullies are not tolerated and monsters are kept at a distance so as to not scare the younger ones. Second, player vs player damage is turned off. Third, each player gets what’s theirs and what they build protected so that no-one can build, break or take anything within that zone except for the person that owns it. Lastly and most importantly, it’s a white list server, meaning that only approved people can access it. It’s not open to just anyone. How does it help autistic children in their real lives? I started it just to give kids a safe place. But then the feedback started arriving from parents that since playing Autcraft, their kids were
What is Minecraft? Minecraft is a video game in which players can move freely through a virtual world and build constructions out of textured cubes in a 3D world. Unlike in more linear games, players have freedom to choose how they interact with their surroundings. As well as building, they can explore, gather resources, craft and fight. Find out more at minecraft.net.
©Autcraft.com / Minecraft.com / Stuart Duncan
going out and talking to people and making friends for the first time ever. Somehow, playing the game was helping them to open up and socialise in real life. One example is from a parent who took their child to the speech therapist, and there were some other children wearing Minecraft stuff in the waiting room. Their child struck up a conversation with them – that shared interest was the perfect starting point, and they talked, listened, asked questions, and offered advice. We ask where people hear about us when they join Autcraft, and lots of people say therapists and psychologists – so we’re clearly being recommended by professionals! Why do you think it helps? There’s a lot of things at play. Firstly, for a lot of autistic kids, it’s a place where there’s not a huge need to try and fit in with your peers, unlike at school. If you have particular interests, you might be scared to reveal them to or share them with other kids, in case they judge, bully or exclude you. But once you’re in a place where that social pressure is gone, you can be yourself and share your interest, however niche it might be, without fear. Secondly, and from a more scientific approach, socialising in an online community is a much more streamlined and controllable approach to social interaction. It means you don’t have all the sensory input which can be totally overwhelming and even downright painful. You just have a screen and a speaker which you can adjust yourself. It takes all that extra anxiety away. You can also take longer over, review and change what you want to say. I think sometimes everyone wishes we could do that in the real world! Online communities can mean kids can take part in ‘real life’ stuff they would otherwise have missed. For example, I planned a virtual firework show in Autcraft on fireworks night, which players could attend. This made them feel
Autcraft has about 1,200 active users each month from around the world
Autcraft: a safe space for autistic gamers
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INTERVIEW • STUART DUNCAN
“The more servers that are out there for kids with autism – or different servers for all special needs – the better.” — Stuart Duncan a part of the occasion which they might otherwise miss out on completely because going to a real show is too much. Enjoying the Autcraft fireworks might even mean a kid develops a view of fireworks as fun, and feels motivated to try a real fireworks show in due course. What if it becomes an obsession? Playing Autcraft means problem solving, interacting, building things, being creative... Why should wanting to spend all your time doing that be a bad thing? It’s fulfilling a need: the kids want friends and they’ve never had friends, whereas on Autcraft they can have friends whom they can talk to about a bad day, or share interests with. How important is parental interest and acceptance? It’s absolutely vital. There are always some parents in there who say, ‘I don’t let my kids touch that’ and ‘I don’t get it’. In my view, if your kids are really into something, that should be enough for you to ask ‘What’s that?’ and to want to find out more about it. If you’re worried about them doing nothing else, set some hourly guidelines or build Autcraft time into other activities in their routine. I’m constantly reaching out to parents to tell them even if they think they’ll never understand Autcraft, to just plunge in anyway! People have come back to me to say it’s the best thing they’ve done. They tell me they and their child are talking, making plans and doing stuff together. They tell me that new communication continues outside of the game and spills into other things, and you continue on together.
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What does running the server involve? Managing a server like Autcraft is a lot of work and it doesn’t generate any income. Just doing the applications to join was an eight-hour job each day because they came in so fast. On top of that you have to be in the game talking to the kids. And there are upgrades and maintenance to be done. We have users from around the world, so it’s non-stop! Sadly I had to hand over day-to-day management of the server to others as it was proving too much to do that, care for my family and to do my day job all at once. I rely on a lot of parents to help look after the server and make sure it’s a safe space to be. It’s not easy to be an admin. You need tons of understanding and patience, and to be able to type really fast! I’ve had some professional therapists helping out, and even they found it too much. If a user breaks the rules, we speak to them to find out why they are upset. There is always a reason. You don’t know that unless you take the time to talk to them. We use the mute function (which stops them being able to chat to others for a period of time) and puts them in ‘jail’ as ways of addressing repeated rule-breaking. Or we tell them to come back tomorrow once they’ve had a break. It’s pure communication and engagement and it’s incredibly time-consuming. Do you feel proud to have made such a difference? It’s still kind of surreal to me. I’ve had famous YouTubers visit and say it’s the best place on the internet. I started the server, but it’s the kids who create the community and who support each
Web developer Stuart set up Autcraft in his spare time other. It’s unbelievable and I’m proud of it but I can’t take all the credit! I think what Autcraft is providing has to be done on a much bigger scale. My perfect dream would be to get an income from it and to be able to hire other people to work on there. The more servers that are out there for kids with autism – or different servers for all special needs – the better. It’s not a competition, it’s to give them a safe place to express themselves. What’s your advice for autistic people who are finding life challenging? Everybody’s afraid of being judged or teased or bullied, of having people think you’re weird. But you need to stop being afraid. You can teach yourself to learn, to develop. When you meet people with similar interests, hobbies and attitudes, you can be yourself and stop trying to be who other people want you to be. ●
Find out more • Read Stuart’s top three reasons why someone who’s never used Autcraft should give it a go in Your Autism Extra. Sign in at www.autism.org. uk/digitalyam. • Find out more about Autcraft at www.autcraft.com. • Read Stuart’s blog at www. stuartduncan.name, follow him on Twitter @autismfather or find him on Facebook Stuart Duncan - Autism from a Father’s Point of View.
ADVICE • DATING
How to up your dating game Unspoken rules, body language, guessing what others are thinking… Dating can be really hard if you’re autistic. Luke Jackson, author of bestselling Freaks, Geeks and Asperger syndrome, shares his top tips for how to get started. BY LUKE JACKSON
It’s okay to mention if you’re nervous when you’re on a date
T
he world of dating and relationships is a scary place, especially when you first get feelings for someone. It can turn the most confident of people into rambling, incoherent, nervous wrecks. But there are some skills you can learn to make it easier. First impressions In the interest of honesty, I’m going to come out and say this straight – humans are superficial creatures. We make split-second decisions on people based on very little information, such as their facial contours, expression and how they present themselves. But there are a few things you can do to improve your chances of making a good first impression. Make sure you shower regularly for starters – smell matters more than we realise. Looking presentable, whatever that may be for your style, is important – but if you don’t feel comfortable, it’ll show.
A “It newsounds conditionsimple, called but approaching social communication someone and saying ‘Hi, how are you?’ disorder has been added.
is a great place to start. Good conversation is a great skill. Try and find common ground of subjects and activities that you both like.”
Meeting new people can be nerve-wracking at any age
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ADVICE • DATING
Finding mutual interests is key to getting to know someone
Approaching people There is a misconception that so-called ‘neurotypicals’ are social machines that simply know the right words to say to someone they’ve just met, or can walk up to a stranger and engage in the smallest of small talk until they get a date. While I’m fairly sure there are those mavericks who can do this without a second thought, usually this isn’t how it works. When you approach someone new for the first time, you have no idea what they’re like, and if you have a tendency to overthink things, that breeds anxiety. Anxiety takes the worst-case scenario as the most probable one. But generally this is unlikely to happen, and even if it happens, things move on. There is no substitute for practice when approaching new people for the first time, and it takes a big push to make yourself do it. Usually it won’t be as bad as you think. Never be afraid of looking like a bit of an idiot – rejection happens to everyone, and those who are able to laugh it off and move past it will fare better in the dating world. Jumping into a conversation with the intent to ask someone out on a date can be a sure fire way to get shot down, and can make the conversation seem empty and vacuous. If you just arrange a coffee or a drink without attaching the stigma of a ‘date’ situation to it, it takes away a lot of the expectation and pressure.
What to talk about? Disclosure is a big subject people miss when it comes to anxiety and dating. Feeling anxious when you meet someone new doesn’t make you weak. It’s completely normal, but the way you tell the person is key; remember, the anxiety is not an excuse but a reason for certain behaviours, and once you’ve broached the subject, don’t keep coming back to it. The question of what to talk about is a difficult one. You could start by asking what the other person likes – what kind of music they’re into, what work they do, what they do in their spare time. If the conversation is going well, don’t be afraid to move past small talk – ask where they’ve travelled, or if they have any big dreams. Do talk about the subjects that are important to you, but don’t go too far and hijack the conversation with talk on your specialist subject. Body language Body language is an incredibly important aspect of human existence, and if you’re autistic, it’s worth doing some research on what some of the different signs may mean. My analogy for describing body language is that if an area is cordoned off it repels curiosity, it beseeches people to stay away, but a simple arrow in its place invites exploration. ●
“For a lot of autistic people, the ability to hyper-focus means finding someone can become an obsession, which can be unhealthy and counterproductive. Putting a lot of pressure on potential partners to match up to inflexible expectations can just put them off.”
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Read more Find advice on building social skills at www. autism.org.uk/socialskills. This advice is taken from Luke’s new book, Sex, Drugs and Asperger Syndrome: A User Guide to Adulthood published by Jessica Kingsley Publishing.
ADVICE • AUTISTIC PARENTS
Building good parentprofessional relationships
Mutual understanding and respect helps you get what you need
It’s vital that autistic parents and professionals can work together well when supporting and advocating for an autistic child. We get advice for both parties from an Autistic activist and parent on how to make it work. BY KABIE BROOK
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S FOR ALL other parents, having children can make it harder for us to look after ourselves and recognise our own needs. But unlike other parents, we are in a minority, and people around us will not always understand well enough how to ensure we get equal access to services, support or medical treatment or assessment for ourselves and our children. As parents, we put the needs of our children first. When attending appointments or talking to professionals about our children, it can feel that our difficulties with the situation are not significant enough to mention, or that by talking about ourselves we are detracting from the time and energy that should be directed at our children. It can be hard to interact with professionals at the best of times. But if they are unaware why we may be acting differently to other parents, or we appear not to react as they
expect, misunderstandings can easily occur. They might misunderstand our body language or other forms of communication and think we are being argumentative, obstructive, aren’t capable, reliable, or at worst aren’t able to support our children adequately. Once there has been a misunderstanding it can be hard to put things right, so explaining early, ideally before a first appointment, can benefit both us and the professional working with us and our children. Remember that professionals will have a duty of confidentiality. It’s your choice who you share your information with and you can choose who is told and who isn’t. But if people don’t know, it may be more difficult to get adjustments that may help you.
All good practitioners should recognise that parents who understand what’s happening, have easily understandable information that’s relevant to them, and are relaxed and fully informed, are in a better place to support their children. When we consider and discuss our own requirements with professionals working with us and our children, we are also educating our children and the practitioners about self-advocacy and the reality of being an autistic adult. One example of how disclosing may be helpful is that it should mean that you can access an independent advocate more easily. Asking an advocate or friend to accompany you to appointments may help, and it could be useful to talk through
“Disclosing that you are autistic will give you protection in law and entitle you to reasonable adjustments.” YOUR AUTISM MAGAZINE
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ADVICE • AUTISTIC PARENTS
Checklist for professionals ■ Avoid wearing strong perfumes,
fabric softener with a lingering scent or jangly jewellery. These can be distancing, painful, or may make it hard for someone to be in the room with you.
■ Give people multiple options
for how to contact you. Some people will struggle with the phone or not use it at all.
■ Offer choice for appointment
times. Some people may prefer the first appointment of the day to reduce the risk of long waiting times.
■ Provide alternative waiting areas.
Some people may be okay to wait but not in the designated waiting area. Offer a quiet space or let them wait outside and text them when it’s their turn.
■ Remind them of their
appointment. A text alert reminder the day before or that morning may help to avoid missed appointments.
any access difficulties with them in order to find solutions. An independent advocate can also help you to speak up or speak on your behalf if you wish and provide information on what options and rights you have in any situation*. Disclosing that you are autistic will also give you protection in law and entitle you to ‘reasonable adjustments’ to ensure you have equal access to services. For example, information in different formats, the right to ask for meetings to be recorded, changes to the environment and longer appointments – as well as an understanding of why we may appear ‘different’ and that we are not being ‘difficult’. In short, the things you need to make the service work for you and your children.
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■ Have flexible lighting. If your
room has artificial lighting, have an uplighter available that can be used instead of the main lights.
■ Have alternatives to group
activities. Be aware that requests to take part in them may induce stress and may not be suitable for everyone.
■ Support follow-up work.
If you’re asking people to implement new strategies at home or ‘do things’ like make a chart or keep a diary, be aware that this may be very difficult and require support. Someone who struggles with this is not choosing to disengage or be difficult.
■ Do provide summaries.
To-the-point, informationbased written records of discussion and outcomes will help to back up any verbal instructions and create shared understanding and agreement.
Most professionals working with children will come across autistic parents at some point
“Once there has been a misunderstanding it can be hard to put things right, so explaining early, ideally before a first appointment, can benefit both us and the professional.” Advice for professionals on how to support autistic parents Autism needs to be recognised as a fact without prejudice. If you work with children, and autistic children in particular, you will come across autistic parents. Some will disclose and some will not: this is their choice and should be respected. You should also consider that some people will not
have identified that they are autistic themselves. It is important to acknowledge that you will work with autistic parents at some point, and to understand what this means for you in terms of legal requirements and obligations. As autistic parents, we love our children no less than and parent with as much love and concern as others.
Disclosing your autism entitles you to adjustments such as a quiet place to wait before an appointment.
Our insight about our children’s needs should be invaluable to you, too. If you are receptive to making adjustments and accept that your understanding of situations may be different to the autistic person (just as theirs is to yours), it will be much easier to work together to do what’s best for everyone. Many autistic parents will struggle with professional interruption to routine, having to meet new people, home visits, arranging appointments that fit into existing routines, and even the system of appointment making. Have patience and respect for the disruption you are causing to autistic parents, as you would for an autistic child. Being observed with the worry that we may be judged unfairly may also cause anxiety. We have spent so much
of our lives being told that we’re getting it wrong just because we are different. Behaving naturally in an unfamiliar environment may be impossible. Another common misunderstanding comes from a tendency for many autistic people to be very ‘solutionfocused’. This can be misunderstood because it means talking about problems often isn’t our primary concern. If something needs to be discussed in detail, it’s helpful to
explain why this is necessary. Don’t assume that we will just know. Everyone is different and the most important thing that you can do is to listen and believe us when we ask for adaptations or say that we are struggling with something. It’s always good to keep in mind the basic list of things opposite, which are relevant to both adults and children. They may affect people more or less: we are all different! ●
Useful websites and resources • *For information about advocacy, visit www.autism.org.uk/about/adultlife/advocacy. • Kabie is a member of Autism Rights Group Highlands (ARGH), a collective advocacy, lobbying and campaigning group of autistic adults living in the Scottish Highlands and beyond. Find out more at www.arghighland.co.uk.
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Getting musical at our day service in Cardiff
Spotlight on our day services
How the NAS can help you Our support centres provide a place where autistic people can come for support, social interaction and to develop new skills. Our Services Marketing Officer, Jessica Phillips, explains what they can offer.
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hat are day services and who are they for? Traditionally known as day services, our day opportunities provide tailored support outside the home for autistic adults aged over 18 to develop skills, connect with others in the local community and take part in activities that enrich their lives. What each person does and the support they receive depends on their needs and the goals they aim to achieve; but this will always be from staff who understand autism and who advocate their independence. Some day services also run youth clubs for children and teenagers or family support groups. What kinds of support do they offer? The activities available through our day opportunities range hugely; from money management workshops to being supported onto a work placement. People could gain a
first aid certificate or run a regular market stall selling their hand-made, high quality items. The activities can vary depending on the service, but the key is flexibility – staff use creativity and all resources available so that the people they support are able to accomplish the things they set out to do, as well as things they hadn’t even imagined they could.
“What each person does and the support they receive depends on their needs and the goals they aim to achieve”
How are they funded? Do I have to pay to use them? They are funded by your local authority, either directly or through personal budgets allocated to you. Find out more about benefits at www.autism.org.uk/benefits. Any great examples of how they’ve improved someone’s life? One autistic adult we support in our day services in Somerset, who also has epilepsy, helps to build planters in the service’s purpose-built wood workshop which are then sold on to local hotels and other businesses, with funds being reinvested into future enterprise ventures. Through developing these local community links, staff supported him to get a paid job at a hotel they regularly sold the planters to. He has now worked part-time at the hotel for several years, he continues to enjoy making items in the workshop and has the support he needs to sustain employment and keep gaining independence.
Did you know?
We have a large number of daytime hubs across the UK, where many of our day opportunities are based. To find out where your nearest hub is and how to get in touch, visit www.autism.org.uk/hubs.
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RESOURCES
Henry Hugglemonster Roar Back MANUFACTURER: Golden Bear Toys: www.goldenbeartoys.com PRICE: £29.99 SUITABILITY: Suitable for children aged 10 months + VERDICT: All in all a wonderful, interactive toy that I would recommend to encourage communication.
Giveaway The winner of last quarter’s competition to win a set of six Tony the Turtle children’s books is Claire from County Down. Well done, Claire!
THIS TOY IS well-made and lovely and soft. My two children weren’t familiar with the show so were very keen to take it out of the packaging to examine! They quickly learnt that when you press one hand it repeats phrases from the show, but more entertaining for them was that pressing the other hand makes his nose light up and he then records and plays back their speech. This caused squeals of laughter and he was quickly taken off to another room to be played with further. My younger daughter (five) kept talking to him and it seemed to encourage interaction between the sisters. My only criticisms are that the roaring was quite loud for a child with sensory issues, and the playback voice was quite high-pitched and tricky to understand.
To win a set of books for young people from Jessica Kingley Publishers, email yourautismmag@nas. org.uk with your name by 17 March 2016. The winner will be announced in the next issue.
Reviewed by a mum of two autistic daughters
MR MONK. Played by Tony Shalhoub, Mr Monk is a former detective in the US television series Monk. Monk explicitly has OCD, but many viewers have noted his autistic traits. Our Qualitative Data Support Officer, Paul, describes the character as “utterly autistic”.
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THE SAGA NORENS There are three Saga Norens, the original Swedish, the American and the French from the two remakes. The lead character in detective drama, The Bridge, some people think each portrayal shows a different autistic archetype.
© BBC/ZDF
© NBC
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© Tiger Aspect
Our six favourite… TV characters with autistic traits
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MR BEAN The creators of the popular comedy character don’t say whether or not Mr Bean is on the spectrum, but some have noted his autistic traits, such as social awkwardness, literal interpretation and brilliant eccentricity. He’s hugely popular around the world.
RESOURCES
Special Needs and Legal Entitlement: The Essential Guide to Getting Out Of the Maze AUTHOR: Melinda Nettleton and John Friel PUBLISHER: Jessica Kingsley Publishers PRICE: £14.99 VERDICT: A useful resource for parents and
professionals who are preparing for a tribunal. THIS USEFUL text provides an accessible overview of the legislation. It unpicks the process from initial concern to appeal and judicial review, and spells out some potential difficulties around interpretation of the law. This book will be very useful for parents and professionals as a guide to preparing an appeal and presenting a case for tribunal. Extremely extensive examples of professional expert reports are included, lines of legal argumentation are supported by references to case law and common problems investigated and answered. This is a very helpful book that might be improved by including a written example of a ‘Grounds for Appeal’ document. Reviewed by Charles Ward, Chartered Educational Psychologist
A Different Kettle of Fish AUTHOR: Michael Barton PUBLISHER: Jessica Kingsley Publishers PRICE: £9.99 VERDICT: An amusing read about the day in the life of an autistic physics student.
FOLLOWING ON from his book on idioms It’s Raining Cats And Dogs, Michael Barton describes a day in the life of an autistic adult (or ‘Autist’ as he prefers) as he ventures into London, observing the idiosyncrasies of the ‘neuro-typical’ world as he goes. Amusing and with illustrations by the author, this is a light-hearted and life-affirming insight into the everyday experience of the ‘neuro-untypical’. It isn’t going to change the world, but walking a mile in eternally positive Michael’s shoes as he enjoys his day can only improve understanding and empathy amongst us all. Reviewed by Stu Ferrol, comedian and writer on the autism spectrum
Giveaway We have five sets of Thomas & Friends Greeper laces to give away. For your chance to win one, email yourautismmag@nas.org.uk and tell us your favourite autistic character from stage, screen or page.
JULIA FROM SESAME STREET Julia was introduced to Sesame Street’s digital and printed story books last year as an openly autistic character. We hope it will inspire other writers and film-makers to include autistic characters in their work.
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ARCHER Created by Adam Reed, Archer is an American adult animated television series about a master spy in New York. There are lots of hints that Archer is autistic, and one episode, Coyote Lovely, focuses on the idea explicitly.
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© CBS
© PBS
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© FX Productions
To order books recommended by the NAS, go to www.autism.org.uk/digitalyam.
SHELDON COOPER The creators of The Big Bang Theory say he’s not autistic, but the wider world and many autistic people see that character as being on the autism spectrum. What do you think? Share your thoughts on Facebook Your Autism Magazine.
Read more reviews on Your Autism Extra at www.autism.org.uk/digitalyam.
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DANIEL MCGAULEY
Daniel, who has Down’s syndrome and is autistic, celebrates on the podium in Canada.
I’m a… Powerlifter Daniel McGauley started powerlifting just 18 months ago at his local gym. Now he’s won gold at the Commonwealth Powerlifting Championships in Canada. B Y S U Z A N N E W E S T B U RY
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OLCHESTER’S DANIEL MCGAULEY has always defied the odds. Born with Down’s syndrome, heart problems and partial hearing, doctors gave him a year to live. Fortunately he had successful heart surgery as a toddler. At school, Daniel became withdrawn and lost his speech. He was diagnosed with autism aged nine. His dad Peter recalls, “We had to have a private consultant come to our home, because there was nothing but delays and setbacks. As soon as I informed the medical fraternity of this consultant’s diagnosis, they immediately concurred. But I was asked why would I want another label for Daniel? My reply was we didn’t need a label, just the help and treatment which we could not access. “Daniel’s autism affects him by his absolute dislike of change. He has safe areas and safe people; other than that he can’t function very well. He needs constant reassurance and structure. Without structure he quickly reverts back to his childhood loves such as Thomas the Tank Engine, and has a defensive attitude.” Daniel first took up powerlifting at the age of 23. His parents were concerned that he had become listless and overweight and they wanted to get him involved in his local community. He began going to his local gym for fitness and cardio workouts. Although the family were cautious due to
Daniel’s former heart issues, they could see that he yearned to go into the weightlifting part of the gym. Once he did, there was no stopping him. “Daniel took off in a big way in powerlifting, not only special needs competitions but also in ‘able-bodied’ competitions,” says Peter. “He has always been placed either first or second and has won a lot of trophies. He works extremely hard, training at his gym four nights per week, and in his own gym at home.” The pinnacle of Daniel’s success was winning gold representing Great Britain as a Special Olympian at the Commonwealth Powerlifting Federation Championships in Vancouver last December. He was the only special needs athlete to represent Britain in the competition, and broke the record for the bench and the squat. The family raised the money to pay for this once-in-a-lifetime experience and Daniel was accompanied by his mother and coach. Daniel recently won Colchester Disabled Sport Personality of the Year. He now aims to become an Olympic/world champion by representing Britain at the Special Olympics in Rio this year. Peter adds, “Daniel loves powerlifting because he can work as though he is on his own, it’s a set routine. He gets the respect of fellow athletes from Colchester Rugby Team and world champions in the gym – he’s in the gym’s hall of fame. He can compete in special needs or ‘able-bodied’ competitions and hold his own. He loves winning and adores the cheering and respect.” ●
• If you’re autistic or know someone on the autism spectrum who is doing something amazing, we’d love to hear about it. Email yourautismmag@nas.org.uk.
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