YOUR Winter 2018
My family Christine McGuinness on life as a mum of autistic twins
Working it
Helping autistic jobseekers
Plus
Autism in books, sibling support and moving into adulthood
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Not going out? Tips to boost your social skills
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Cover image: Lorna Roach/OK! Magazine
YOUR Winter 2018
Real life
EDITOR Suzanne Westbury YourAutismMag@nas.org.uk
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Contributors Hermione Cameron, Greg Cranness, Fiona Grace HEAD OFFICE The National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk SUPPORTER CARE TEAM 0808 800 1050 membership@nas.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@jamespembroke media.co.uk SUBSCRIPTIONS Only available to members of the National Autistic Society. To join, visit www.autism.org.uk DESIGN & PRODUCTION CPL (Cambridge Publishers Ltd) 01223 378000 www.cpl.co.uk 1 Cambridge Technopark, Newmarket Road, Cambridge CB5 8PB PRINT Liaison Print Management 0113 275 3912 The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG © Your Autism Magazine Winter Vol 52, No 4 National Autistic Society ISSN 2055-0413 The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a website does not necessarily imply that our charity endorses or supports the group or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.
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Christine McGuinness shares her story
Contents
18
Support for siblings
16
What’s new?
04
Employment training
24
Autism across Europe
11
Christmas magic
28
Lorna Wing
13
Boost your social skills
32
Readers to the rescue!
15
Adult-ing with autism
36
Give your sibling support
16
Making a difference
41
Christine McGuinness
18
Notebook
43
A novel approach
22
I’m a... kickboxer
46
A roundup of the latest news
Diagnosis and support
Our autism hero
Helping with grandchildren
Advice for adult family members
Life with autistic twins
Discovering autism in books
Only
Our new online module
Joseph and his mum, Gemma
Get inspired by Elysia’s story
Moving into adulthood
Our Parent to Parent service
Things to read, do and see
Read Anthony’s story
16% autistic of
adults full-time paid work are in
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What’s new?
Get in touch!
Our roundup of the latest news and views
Introducing our new look On 27 September, our charity launched a new look and vision of why we exist and what we want to achieve: a society that works for autistic people. You’ll see that we have updated Your Autism magazine, too. Our charity was founded 56 years ago, and since then we’ve changed what we say and how we look many times. We do this so autistic people and their families understand what we do, and our charity’s purpose. We also change because understanding about autism is ever evolving, in
part thanks to the Watch Chris many successes Packham, Jane we’ve achieved Asher and Mark with your help Lever talk about in changing these changes at attitudes among www.autism.org. the public, uk/newvision businesses and government. Autistic people and their families have told us they really like the new look. We hope you do, too. Tell us what you think of Your Autism’s new look at YourAutismMag@nas.org.uk
The Autism Act 10 years on In 2009, we led a campaign to persuade the Government to introduce the first disability-specific legislation in England – the Autism Act. The act sets out the rights of autistic adults. It began as part of our I Exist campaign, thanks to a private member’s bill taken forward by Cheryl Gillan MP with our support. The resulting act put a duty on the Government to produce a strategy for autistic adults, which was published in March 2010. The Adult Autism Strategy was the Government’s plan to make sure that autistic adults get the help that they need at home and with finding work. Next year will mark 10 years of the Autism Act, when we’ll campaign on what
Our campaigning led to the Autism Act for autistic adults
else needs to be done to make England a society that works for autistic people. We need your help with this. Has the Autism Act helped you or your family? Let us know your experiences at YourAutismMag@nas.org.uk
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News
Gift membership You can now buy National Autistic Society membership as a gift. If you know someone who would like to receive this magazine and our many other member benefits, visit
Autism Hour celebrations get under way in South Hampshire
www.autism.org.uk/giftmembership
Amazing success for Autism Hour 2018 Autism Hour 2018 saw 11,768 businesses host more than 30,000 Autism Hours across the week of 6-13 October. By dimming the lights, turning down the music and educating staff about autism, businesses across the UK contributed to making shopping easier for autistic people. Participating stores included our Autism Hour sponsor, The Entertainer, along with Sainsbury’s, Ikea, Lloyds, Co-op, Schuh, Home Bargains, Pets at Home and many more. This year’s Autism Hour went beyond the high street. Loose Women even held the first autismfriendly TV show. The producers created a comfortable atmosphere for autistic audience members by turning off music and dimming the studio lights. Our ambassador, Christine McGuinness – mother to autistic twins – joined the panel to share her experience of raising autistic children. Britain’s Got Talent comedian Robert White also discussed his autism diagnosis.
Have you had a good or bad experience of a social care or health service in England, such as a GP surgery or hospital? If you think the Care Quality Commission needs to know what happened to you, go to www.cqc.org.uk/share-your-experience
© ITV. Loose Women
Read about Christine and her twins on page 18
Staff at this shopping centre in Scotland gave Autism Hour their support
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Tell the CQC about your care
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News
Autistic children in Scotland unlawfully excluded from school In September, we published a report, in partnership with Scottish Autism and Children in Scotland, on the experiences of autistic children in Scotland who have missed school. More than a third (34%) of parents who responded to our survey said their If your family is children had been experiencing similar unlawfully excluded issues, contact our from school in the last Education Rights two years – with 22% Service for advice saying this happened at www.autism.org. several times a week. uk/educationrights An unlawful exclusion is when a school sends a child home without using the formal exclusion process, meaning monitoring and support systems are bypassed. Scottish Government guidance is clear that unlawful exclusions should not happen. We followed up by meeting the deputy First Minister and Cabinet Secretary for Education and Skills, John Swinney MSP, in November to discuss how we can stop unlawful exclusions. You can read our report at www.notengaged.com
Our annual survey results We asked you to complete a survey about your information needs and the issues that are most important to you. More than 7,000 people responded – 30% are autistic, and the remainder are parents or carers (many will be both). Mental health issues, being out and socialising, and making or keeping friends are the issues about which most autistic people said they needed information. Dealing with challenging behaviour, getting support in education, and what to do after a diagnosis are topics family members wanted to know about. Respondents said they preferred to receive information face to face, followed by web and email. Many are already benefiting from our website information and campaigns, with 71% saying that they know more about autism as a result of our work over the last year. We will use the results to shape our campaigns, guidance and services over the coming years.
Daldorch School 20th anniversary Our Daldorch House School in East Ayrshire turned 20 this year. Celebratory events included afternoon tea for staff, some of whom started working at Daldorch the day it opened – and still work there today. In November, pupils performed Where the Wild Things Are, before creating an anniversary fountain in the school’s orchard. School Principal Bernadette Casey said: “Over the last 20 years, we have supported and challenged autistic children to make positive progress in all aspects of their learning, to build resilience in order to cope in the wider world and meet their full potential. We look forward to supporting their journeys in the years to come.”
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Diary dates
What to do and where to go
29 January 2019
1-7 April 2019
This new conference will explore co-occurring conditions including ADHD, epilepsy and dyspraxia, their connection with autism and how diagnosis and appropriate treatment should be approached. Speakers will include practitioners, researchers and autistic individuals. https://learn. autism.org.uk/ehome/index. php?eventid=200183021&
Get the date in your diary – World Autism Awareness Week is just around the corner. Whether you get involved at home, as a family, or get your child’s school or your workplace involved, sign up now to get all the resources you need. This is a huge opportunity to tell the world about autism and raise money so we can keep building a society that works for autistic people. www.autism.org.uk/ WAAW19
7-8 March 2019
1-7 April 2019
Autism and Co-occurring Conditions Conference Leeds
10th Anniversary Autism Professionals Conference International Convention Centre (ICC), Birmingham
Our annual two-day conference is a great opportunity for professionals to discuss best practice and share learning. Why not attend our Autism Professionals Awards evening, which recognises professionals and services who are leading the way in innovative autism practice? https://learn. autism.org.uk/ehome/index. php?eventid=200180853&
World Autism Awareness Week
New public awareness campaign
World Autism Awareness Week will also see the launch of our charity’s latest campaign to increase the public’s understanding of autism, set to build on our award-winning Too Much Information campaign.
6 April 2019
Spectrum Night Walks
Take to the streets and tell the world about autism along with hundreds of other passionate people in our biggest walking fundraiser of the year. You’ll play a huge part in transforming the lives of autistic people and changing public attitudes. The Spectrum Night Walks will be in London, Glasgow, Cardiff, Manchester and Belfast. Sign up as a team or as a solo walker today at www.autism.org. uk/nightwalk19
19 May 2019
Yorkshire Three Peaks
This challenging and rewarding feat will be an experience to remember. Make friends for life and contribute to the vital work our charity does by raising funds. Are you up to it? Find out more and sign up at www.autism.org.uk/y3p19
4 August 2019 RideLondon
RideLondon sees tens of thousands of people cycle 100 miles through London and Surrey. It’s a great way to raise money – sign up for a charity place with us or let us know in January if you are awarded a place in the ballot. www. autism.org.uk/ridelondon
10-11 August 2019 Snowdon
We’ll climb this stunning mountain together with an experienced guide, on a (hopefully) sunny weekend in August. Join the team now, as places are limited – sign up at www.autism.org.uk/ snowdon19
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New research
Autism across Europe Findings are revealed after three years of research Autism Spectrum Disorders in the European Union (ASDEU) was a three-year programme (2015-2018) funded by the European Commission to research autism prevalence, diagnosis and interventions across Europe. Its overall aim was to find ways to improve care and support for autistic people and their families. Run by a consortium of 20 groups from 14 countries – including our charity, King’s College London and the London School of Economics – it is the most comprehensive clinical and policy autism research ever done in Europe. It has generated important findings that are set to influence the development of autism practice and policy across Europe. ASDEU submitted its findings and recommendations to the European Commission in the autumn. Key findings included: ● The average estimated prevalence was that 12.2 per 1,000 (one in 89) children aged seven to nine years is autistic. Overall autism prevalence estimates varied among European countries with access to population registries, from 5.4 per 1,000 in France to 26.8 per 1,000 in Iceland.
● Diagnosis is still a big problem in Europe: research showed that, on average, autistic traits are first identified at 25.3 months, while diagnosis does not happen until 44.4 months. Only 44.8% of families said professionals informed them about their child’s specific needs, and 20% said they received no information at the time of diagnosis. ● ASDEU found a universal screening programme for autism, such as the one offered in Spain, could be transferable to other countries. This is because all countries have regular medical check-ups of children under two in primary care,
Read more
Further research from this unique programme to help frame autism practice and policy across Europe is at http://asdeu.eu
and all countries except Denmark have a version of the Modified Checklist for Autism in Toddlers, the instrument for autism screening. It recommends long-term assessment of the effectiveness of screening programmes. ● In ASDEU’s survey of autistic adults, their carers and professionals about their experiences of services, areas of concern were staff training levels, basic services practice, post-diagnostic support and the transition from adolescent to adult services. The study identified there were problematic gaps between good practice guidance and autistic adults’ actual experience of support. ASDEU has recommended that the EU encourages member states to adopt cross-sectoral national strategies or action plans to respond to the needs of autistic people, in line with the UN Convention on the Rights of Persons with Disabilities.
asdeu Autism Spectrum Disorders in the European Union
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People
Dr Lorna Wing, co-founder of the National Autistic Society, coined the term ‘autism spectrum’
One woman helped change the lives of the 700,000 autistic adults and children in the UK for the better, says Fiona Grace, Brand and Content Manager of our charity, and herself autistic On 7 October, it would have been the 90th birthday of Dr Lorna Wing, who coined the term ‘autism spectrum’ and co-founded the National Autistic Society. Born in Gillingham in 1928, Lorna Wing became an internationally respected authority on autism. Along with Dr Judith Gould, she undertook an ambitious study in the late 1970s of autistic adults and children in Camberwell, South London. Their work was instrumental in highlighting that the number of autistic people was far higher than previously thought – one in 100 rather than one in tens of thousands. This opened the way for more people to get a diagnosis and muchneeded support. The concept of the autism spectrum is a complex one. It is not a simple line from one end to the other and Lorna Wing’s If you feel you, or someone you know, could be autistic and would like to find out more about how to get a diagnosis, visit www.autism.org.uk/diagnosis
Lorna Wing – an autism hero favourite saying was: “Nature never draws a line without smudging it.” Wing, who died in June 2014, was also closely involved with the National Autistic Society. As a mother to an autistic daughter, Susie, she co-founded the charity in 1962. And, in 1991, Wing and Gould founded the National Autistic Society’s first diagnosis centre – the Centre for Social and Communication Disorders. In 2008, it was renamed the Lorna Wing Centre for Autism. It was the first place in the country to provide a complete assessment and advice service for children, adolescents and adults with social and communication disorders. The Diagnostic Interview for Social and Communication Disorders (DISCO), which Wing and Gould developed in the 1970s, remains one of the most detailed forms of clinical assessment. As an autistic woman, I am extremely grateful to Lorna Wing for the work she did to expand the definition of autism. I believe both my brother and I were able to receive our late diagnoses because of her work. As Brand and Content Manager at the National Autistic Society, I am extremely proud that the charity’s new logo is based on the spectrum. I hope Lorna Wing would have approved. Winter 2018 13
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Readers to the rescue!
Post your problems or answers on Facebook at National Autistic Society, email YourAutismMag@nas.org.uk, or write to: Your Autism, National Autistic Society, 393 City Road, London EC1V 1NG
Do you have a problem our readers can solve? Get in touch and benefit from the experience of our other members
Q
Our three-year-old grandson has been diagnosed as autistic. He has no speech at all, just whoops and chirrups. There is little in the literature to help those with completely non-verbal children. How can we tell him what he should not do? How can we persuade him not to regard anything he can lay his hands on as a potential toy, and how can we get For expert advice him to sleep at a reasonable hour? Jim and information on any autism-related issues, call our Autism Helpline on his needs known to us in other (nonThe key is consistency. Keep 0808 800 4104 verbal) ways. I wish you the same joy our communication lines open son has given us over the last 32 years. Tina with your son/daughter and follow their lead. A tip that has worked for us is Keep language simple and only give three key words to tell your grandson what you want him to do. at a time, for example “Johnny drink milk?” or “Johnny Say “sit on the sofa” rather than “stop jumping on play ball?”. Use visual aids, such as photographs of the sofa” (if I say that, all my son hears is “jumping toys, food and daily routines. A ‘now, next, then’ board on the sofa!”). Louise with pictures of what is happening now, what you’re doing next and then after that will help your grandson When our son was three, he had similar problems. understand and feel less anxious. He can also use We focused on what he was able to do, that is, see the pictures to communicate what he wants/needs. us and hear what we were saying. Then it became Persevere. It may take him some time to process and easier to give simple instructions, such as “No”, and understand information. Helen gradually he did respond. Sleep at a reasonable hour was achieved by following the same routine – meal, hot drink, then cuddle and bed. This sounds easy, but Helen wins a copy of Fifteen Things They Forgot to over time it did help. What was required was a lot of Tell You About Autism – the stuff that transformed patience and the conviction that our son would make my life as an autism parent by Debby Elley.
A
Help me next!
I’m home schooling my autistic son. Can I claim any funding for resources such as an iPad, and if so, where from? Anonymous
Send us your solutions for a chance to win a copy of The Parents’ Practical Guide to Resilience for Children aged 2-10 on the Autism Spectrum by Jeanette Purkis and Emma Goodall.
By writing to us with either a problem or an answer, you give consent for your letter to be published. We reserve the right to edit submissions.
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How to…
Give your sibling support Is your adult brother or sister autistic? Follow our advice for adult siblings
just Disney and other family-friendly stuff. I love to hear their reviews as well – it’s fascinating to hear how they interpret classic movie tropes.”
Spend time doing things with your brother or sister that you both enjoy, rather than being there only as a caregiver
Take pride in your brother or sister’s achievements
Kate Vickers, whose two brothers are autistic, says: “Stephen and Jonathan are really into films, and we spend a lot of time texting about them. And, when we can, we visit the cinema or watch DVDs together. Our tastes do differ, but as they get older, they are making more varied choices – a few years ago, it was Our ambassador Matt Richardson and his brother, Alex
Comedian Matt Richardson says of his brother, filmmaker Alex: “I’m so proud of what Alex has achieved – he’s creative and ambitious, and illustrates what can be achieved by autistic people when those around them understand autism and support them in the right way.”
Discuss plans for the future with your parent/s, siblings, and other close family, and make sure that the needs of all involved are considered
You might be concerned about the future care needs of your autistic brother or sister, particularly when your parents are no longer able to be their prime carers. As a family, talk about ideal care options for your autistic sibling in the future. He or she should be included in this, using the right kind of communication to enable them to express their views. Consider whether they are able to live independently, or what care and support option would be best for them. Use this
opportunity to discuss your role as a sibling, and how much you can be involved.
Share your experiences with other adult siblings
According to the charity, Sibs, there are 1.7 million adults in the UK who have a brother or sister on the autism spectrum, or with learning disabilities. Your local National Autistic Society branch is a good place to meet other adult siblings. Sibs also has a network of 11 support groups for adult siblings. Run by volunteers, the groups aim to improve wellbeing and resilience, and help you be an advocate for your brother or sister.
Accept it is normal to have mixed feelings about your sibling’s autism
List the positive benefits you gained through growing up with – and being with – your brother or sister. You may have more empathy and knowledge of care and practical tasks, and this may have even influenced your career choice. In Dr Rosemary Tozer and Karl Atkin’s research* involving 21 adult siblings, nearly all the women in the sample were in professions such as teaching, nursing or social care, showing how they were continuing to support others. However, nearly half the sample had sought counselling to help them come to terms with their experiences when growing up, which they now associated with depression, low self-esteem or anger. If you have some of these feelings, it may help to talk to your parents, a friend or a counsellor about your childhood experiences, and how you felt growing up.
*Tozer, R. and Atkin, K. (2011). Adult Siblings of People with Autism and High Support Needs. York: University of York
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How to…
List all the positive benefits gained through growing up with your brother or sister
Find out more ● Read more advice for adult siblings at www.autism.org.uk/siblings ● Find your local branch of the National Autistic Society at www.autism.org. uk/branches ● Read more at www.sibs.org.uk and register to attend your local adult siblings group at www.sibs.org.uk/ support-for-adult-siblings/adultsibling-support-groups ● Read our interview with Dr Rosemary Tozer at bit.ly/adultsiblings
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Real life
“The first time a paediatrician told us our twins were autistic, we were in utter shock” Our ambassador, Christine McGuinness, writes about her twins’ diagnosis, learning about autism – and what Christmas is like in the McGuinness household
© ITV. Loose Women
Patrick and I first met 11 years ago and married four years later. We have three beautiful children. Our twins Leo and Penelope, aged five, have both been diagnosed with autism and our youngest, Felicity, who’s two, is also showing signs of autism.
As a family, we love the simple things in life. Being together at home is where the children are happiest so we tend to stay in a lot. We keep weekends quiet so the children don’t get too overwhelmed but, as they’re getting older, they are coping a lot better with visiting new places with lots of visual preparation. Our village park is usually quiet so always worth a visit. We like to watch planes together at Manchester Runway Park. We hope that by watching the planes and hearing the sounds, it will help Leo and Penelope prepare for a holiday abroad together as a family – but only when they’re ready. For our children’s future, we don’t mind what they choose to do career-wise; we will support their choices as long as they are happy. We hope that they will grow up to make friends and build relationships, and increase their independence and confidence. Most of all, we just want our children to be happy and healthy.
Utter shock
Christine spoke about raising children on the autism spectrum on ITV’s Loose Women
The first time a paediatrician told us our twins were autistic, we were in utter shock. I think she said it quite bluntly, probably assuming that we might have already known, but we had absolutely no idea, even though there were a lot of signs. The twins had had so many other appointments
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with speech and language therapy, food/ sensory play and early years support. We just thought this was another check-up on their development – we weren’t expecting to be told “your twins are both autistic”, so, initially, it hit us pretty hard. The time afterwards was awful. We were told our children had this lifelong condition that we knew nothing about and we were then sent off with unanswered questions and no-one to turn to. Felicity was only a few weeks old and it was near Christmas time, which is always particularly difficult for Leo and Penelope. I found that researching online really helped me to understand autism, but my children are my best teachers. Even when they were Researching online non-verbal, we would communicate using really helped me pictures. I found the early to understand days really upsetting autism, but my when they couldn’t children are my express what they wanted, but they are best teachers good at indicating what they want or need now. Finding ways to communicate really helped reduce the meltdowns, and understanding that preparation is key helped to reduce anxiety. I still use videos or photos if we are visiting somewhere new. We do have meltdowns, but we are getting good at stepping in before it happens – you can usually spot the signs! We find that distractions work well, and it can also help to separate them and give them one-to-one attention.
Starting school
Leo and Penelope attend a very small school that includes children with and without special educational needs. I looked at 12 schools – choosing the school was probably one of the biggest decisions I have ever made. I knew getting it right or wrong was going to affect them and us as a family.
Lorna Roach/OK! Magazine
Real life
I’m very pleased to say they have thrived during their first year. They both have oneto-one support. I don’t think they would manage without it. The small class numbers and relaxed environment was everything I was looking for and it has proven to work well, as they love the routine and structure at school. Although their social skills aren’t great, Winter 2018 19
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Read other they are becoming increasingly Christmas stories on our online hub confident around other children. at www.autism. For us, raising awareness org.uk/ about autism is extremely christmas important. We strongly feel that the only way to really help our children and others alike is to help people understand their condition. Since understanding it more ourselves, we know how beneficial it’s been for all of us as a family. When you’re fuelled with knowledge and you know what you’re dealing with, it’s not so daunting. We knew nothing about autism at first, so naturally the unknown was quite scary and we felt helpless. That’s why I’m thrilled to be an ambassador for Christine is the National Autistic Society, and help raise planning a lowawareness – and extra funds.
Dealing with Christmas
Christmas is definitely the hardest time for us. The school closes for three weeks, which is a long time to have a change of routine for Leo and Penelope. The Christmas trees, lights, decorations and music are all too much for our children, and everywhere they go suddenly looks different. It can be overwhelming, but also quite scary for them to see so many changes at once. Emotionally, we find this upsetting to deal with. As parents, all you want is for your child to be happy and Christmas is that time of year where everyone should be full of joy. We try to keep Christmas quiet now, as we don’t have many visitors all year. If people suddenly start popping over – obviously with lovely intentions – it is unusual for the children, so can be unsettling for them. We keep presents to a minimum and spread them out over a couple of days; we find the children are much happier with one or two small gifts rather than a load all at once. Again, excess is just too much for them, they get over-stimulated and end up exhausted and upset. We will attempt a Christmas dinner for ourselves but, because the children have
key Christmas for her family this year
Read more
Lorna Roach/OK! Magazine
Real life
sensory issues with food, they will have their usual chicken nuggets and chips! The lack of variety with their food was something that used to really get me down, but because I know this is a sensory issue for them, I just celebrate when they do try something new. This year I am planning to put a tree up for three days. We don’t normally, but as the children are understanding more, I think I can prepare them well. I’m going to put it up in the lounge as this is a room that Leo and Penelope rarely go in so, hopefully, it won’t affect them too much as it’s not always in their sight. I will involve them in decorating it, too – passing some control to them will reduce anxiety. They’ll be watching it change rather than coming home to a fully decorated tree in the hallway. It might sound sad for some people reading this, but believe me, I would choose to have happy, content children over a big, traditional Christmas. Seeing them happy is what makes us happy.
Hear more from Christine at www.autism. org.uk/digitalyam and find out what she wants the public to understand about autism – and the messages she gets from other parents and autistic adults.
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Research
A novel approach: autism in books Matthew Bantick is a Laidlaw Scholar researching depictions of autism in literature at the University of York, under the supervision of Professor Helen Smith. His younger brother is autistic. Here, he writes about his findings so far A popular message within the autistic community is that ‘once you’ve met one autistic person, you’ve met one autistic person’. This mantra encourages people to abandon the idea of a typical person on the spectrum: everyone on the autism spectrum is unique. So, how well is this message expressed in literature featuring autistic characters? In a novel, anything is possible. This should lead to an incredibly diverse range of characters with and without autism; representations should include
every kind of character in every setting. The sad reality, however, is that they don’t. All the autistic characters I have encountered are ultimately good people, such as Caitlin in Kathryn Erskine’s Mockingbird and Jacob in Jodi Picoult’s House Rules. They do their best and, more often than not, they achieve their goals. There is nothing wrong with such representations, of course. In fiction as in life, there are good people, and people who succeed. But there are also bad people, and people everywhere in between.
If popular culture repeatedly typecasts a group, it not only runs the risk of appearing patronising, but it also fails to adequately represent the group. At the same time, while autism is an important part of a character’s identity, some novels risk making it the sum total of their identity. Autistic characters need to be more than just ‘the character with autism’.
Current representations
Over the summer, I read 15 novels featuring characters explicitly
Less than
a quarter
of the characters
were adults
50%
of the novels had an
autistic character with savant level abilities or
superpowers
two characters
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Research
Where are the representations of adults on the spectrum?
Matthew Bantick analysed 15 books with autistic characters
described as having autism, and analysed them for accuracy. Next summer I will return to those 15 books to see whether they can be of use in educating and informing people about autism, and the experience of those on the spectrum. Only four novels featured representations of autism in a primary character that were largely realistic: M is for Autism, Queens of Geek, Speed of Dark and The Curious Incident of the Dog in the Night-Time. I was struck by a handful of recurring stereotypes. Four of the 15 novels featured an autistic character with savantlevel abilities, including Robert Ludlum and Gayle Lynd’s The Hades Factor. Three others had superpowers, as in Michael Grant’s Gone. Age is another factor. To decide which novels I would study in detail, I identified 174 novels with a character who explicitly had autism: incredibly, less than a quarter of those characters
were adults. Autism is a lifelong condition, so where are the representations of adults on the spectrum?
Other conditions
Another interesting absence are other conditions occurring alongside autism. Those on the autism spectrum have a higher than average chance of also being diagnosed with conditions such as a learning disability and epilepsy. However, only two of the 15 books had any explicit related condition. Both of those portrayed anxiety conditions. Those two books were far and away the best representations of autism I read. And both were written by autistic people – this is not a coincidence. With even the best books I read written by neurotypicals, I always felt there was some flaw or lack. However, Jen Wilde’s Queens of Geek and M is for Autism by students of Limpsfield Grange School with Vicky Martin are the kinds of
representation that I would like to see more of. These two novels presented their characters as real, everyday people: they weren’t savants, they didn’t have superpowers. They had hopes, dreams and fears. They understood romantic love and had crushes and relationships. The characters had autism, but were not defined by it. And that is the fundamental strength of these books. Characters with autism are being featured more in literature. The next steps must be to ensure that those characters are not misrepresenting autism; as well as ensuring that they form a diverse cast. We need good autistic characters and bad autistic characters, successful and failed autistic people, elderly people and children on the spectrum – and everything in between. Life is a spectrum, too, and fiction needs to represent the diversity of reality to ensure that it does not patronise. More importantly, it needs to ensure that the representation is not token or partial, but complete and sometimes challenging. What’s the best depiction of autism you’ve read? Let us know at YourAutismMagazine @nas.org.uk
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Employment
We speak to Emma Kearns, our Employment and Enterprise Manager, about our new training module to help autistic jobseekers – and meet Ed Fraser, who stars in it
Our new employment online training Why has the National Autistic Society developed this training?
As part of our Autism Employment Gap campaign, we found that 77% of autistic people want to be in work, but fewer than one in five has a full-time job. Employment isn’t right for all autistic people, but being in meaningful work can provide a real sense of self worth, engagement and purpose. There is an undiscovered workforce of motivated, talented autistic people who are having serious difficulty finding work. Our new employment module, to be released in January, has been designed to support autistic adults and young people into employment.
What does the module cover?
It looks at the steps involved in applying for work, interviewing tips and starting work. We aim to allow users to create a personalised profile, which they can then use when attending interviews or starting work. The online resource will help autistic jobseekers: ● identify their personal skill set and positive attributes ● support their own understanding of their autism, including positive disclosure ● develop CV writing and job application skills ● develop interview techniques and strategies ● develop skills to prepare for the workplace.
People can complete the module at a pace that suits them. They can pause it and return to their work at any time.
What are the difficulties associated with job hunting?
Autistic jobseekers often have difficulty with identifying essential versus desirable skills or qualifications when reading job adverts, as well as struggling to effectively ‘sell’ themselves, which is something that is expected from employers. Autistic adults also tell us that they have difficulty thinking about their skills, abilities, experience and needs in context, hypothetically and relevant to the specific role they are applying for – and this is something
24 Your Autism
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Employment
Just
16% autistic of
adults
are in
full-time paid employment And, in
almost a
decade
, this appalling situation
hasn’t improved
that we aimed to address while designing the module.
How can I access the training? The Finding Employment module will be launched on 7 January. To start using the module, go to www.autism.org.uk/onlinetraining We are very grateful to have been funded through the City Bridge Trust’s exciting ‘Bridge to Work’ project, enabling us to offer this module for free. Over the next three years, this programme will provide our charity funding for projects that offer employability support for young autistic people, and strengthen links between employers and the disabled community, including autistic people. See www.citybridgetrust.org.uk/ bridge-to-work for more info on Bridge to Work.
Only
32%
of
autistic adults
are in any kind of
paid work
Employment won’t be right for all autistic people. But
77% of unemployed
autistic adults, or people responding on their behalf, told us they
want to work
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Employment
“I’m brilliant at empathising with others” Ed Fraser, Project Manager at FutureLearn, appears in the Finding Employment module. Here, he tells his story
All employers need to question their hiring practices
When were you diagnosed? I was diagnosed as a young child, so I’ve always known I was autistic. How does it affect you? I stim frequently, can have difficulties managing my emotions, and experience sensory overload, particularly with sounds. More importantly, though, I’m brilliant at figuring out problems, explaining how things work, and empathising with and helping others. What challenges did you face as an autistic jobseeker? There’s a lot of unknowns when you’re looking for work in sectors like mine, such as what salary you can ask for. That’s a socially awkward conversation in British workplaces anyway! I think there’s a perception among employers that it’s difficult or more expensive to hire someone who is openly autistic, and this need not be the case. How did you get your job at FutureLearn? My first job at FutureLearn was as an Editorial Assistant. I was asked to quality-check a course as part of the application process (ideal because of my
Describe your day-to-day work I’m a Project Manager in our Client Services and Studio team. I work with clients to deliver projects – including new online courses, employer training and public education initiatives – that help transform access to education around the world.
Why did you contribute to our Finding Employment module? I feel it is scandalous that only one in six autistic people are in full-time work, and it indicates a failure in the way we as a society choose to hire people. All employers need to be prepared to question their hiring practices, not just because it’s a demand of an equal society, but also because of the commercial opportunities they might be throwing away by not making simple accommodations at the hiring stage.
What’s your favourite part of the job? Nearly nine million people use FutureLearn, and lots of them write in to us to say thank you when they complete a course, often with a picture of them with their Certificate of Achievement. Seeing these always warms my heart.
In the module, you give lots of tips. What’s your best piece of advice? Think about and note down some of the skills you have acquired in your daily life outside of work, and how you might use them in a place that you would like to work.
attention to detail) and was then interviewed by a friendly panel in a quiet, distraction-free environment. A senior colleague encouraged me to apply for a role in a new team in late 2017, after I covered on a project, and I got a promotion to help set up the new team.
26 Your Autism
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EQUALS is committed to improving the lives of children and young people with learning difficulties and disabilities through supporting high quality education.
Written by Mike Sissons and originally developed at The Dales School (North Yorkshire)
For pupils working below age related expectations
MAPP — Semi-Formal
Mapping and Assessing Personal Progress For learners of all ages working within a Semi-Formal Curriculum Model
MAPP (Semi-formal) is a suite of materials developed to facilitate the planning, assessment and recording of progress in relation to personal learning intentions. Section 1:
MAPP (Semi-formal) Planning MAPP Milestones
Section 2:
MAPP (Semi-formal) Assessment
MAP
Mapping and As Introduction Section 1 Section 2 Section 3 Section 4 Section 5 Appendix
The Assessment of Lateral Progress (ALP)
Section 3:
MAPP (Semi-formal) Recording Guide to the Spreadsheets
Section 4: For more information visit www.equals.co.uk
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MAPP (Semi-formal) Principles and Processes Email admin@equalsoffice.co.uk or telephone 0191 272 1222
28/11/2018 12:44
Setti Asse Reco Ratio Pupi CSD
Real life
Christmas magic will be in Joseph’s smile Gemma Adams, mum to four-year-old Joseph, discusses her son’s diagnosis, her own autism assessment and her changing attitude towards Christmas I’m Gemma Adams and my son, Joseph, was diagnosed with autism earlier this year. Since Joseph’s diagnosis, I’ve also been placed on a waiting list for an assessment. My experiences have inspired me to study a Master’s in special educational needs at Exeter University, where I plan to specialise in autism.
Joseph’s diagnosis Joseph was two when he was first referred to a paediatrician, and we waited nearly two years until he was formally diagnosed. I remember crying the day that I received his diagnosis. It confirmed what I had always thought – and what others had continually questioned. As Joseph is very polite and wellbehaved, the common perception was that he was always happy. Any requests I made for support were often challenged and thought of as unnecessary. On one occasion, one of Joseph’s nursery teachers even assumed I had post-natal depression and asked whether I was on medication! Of course, what they were not seeing was Joseph’s behaviour at home. While Joseph was very good at masking his stresses in the classroom, he would often return home very upset. He would stim a lot and it could be a real struggle to understand what had upset him during the day.
Gemma Adams and her son, Joseph, enjoy cuddles
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Real life
I think nursery staff would benefit from having compulsory autism training and should play a more pivotal role in diagnosis. Sadly, too many children show traits that go unnoticed during early years and this delay just isn’t acceptable. Joseph is now at a small mainstream school and he absolutely loves it. The staff are so supportive towards him and, had it not been for the school’s SENCO, I honestly don’t think he would have had his diagnosis when he did. His diagnosis has definitely given me a renewed confidence to stand up for him and ask for the support he needs.
Being supportive at home After a day at school, Joseph can sometimes struggle to manage his emotions. So, I keep evenings very calm and structured. I’ll make very few plans after school and will organise meals that are easy to prepare so that more of my time can be spent with him. He’s a very loving boy and likes lots of cuddles. I’ve also used picture tools, such as PECS and Makaton, to understand when Joseph might be hungry or thirsty. While he demonstrates an advanced vocabulary for his age, much of his communication is recycled from books, films and adults around him. He’ll often use words that have little context in the conversation you’re having, so the picture tools are helpful for understanding how he’s really feeling. Questioning myself After Joseph was referred for an autism diagnosis, I noticed that many of the symptoms we discussed resonated with my own experiences. For as long as I can remember, I’ve often felt like I’ve struggled to fit in. My parents recall spending many years encouraging me to make friends, but I wasn’t interested. I also found the school playground far too noisy and preferred to spend my break times following the teachers around.
Document behaviour and concerns in a diary, and video any unusual behaviour or speech, as this can really help when explaining behaviour to a specialist As an adult, I’ve drifted between different jobs. I would start a new one with expectations of being ‘better’, only to find myself experiencing the same struggles. I’d find myself getting very frustrated at people typing loud, slurping hot drinks or humming, all of which made it difficult to work in an office. I also recall people talking behind my back, saying that I talk too much or that I was boring. Sadly, this progressed into bullying and name calling, and ended up with me having to take some time off with depression. I really hope that, one day, I will be able to start a job and be accepted for being me. Until now, I always put my struggles down to depression and anxiety, but Joseph’s diagnosis and my own assessment has given me greater perspective. Following a pre-screening questionnaire, I have been put on a waiting list, with an expected assessment date in May 2019. Winter 2018 29
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Real life
Many of our negative experiences over the years have been because of a lack of autism awareness in school and the workplace. During my own training as a primary school teacher, I felt that autism needed much more focus. While we visited it within topics, there was no opportunity to go into it in significant depth and I subsequently left a four-year degree with very limited knowledge. I hope to draw upon my experiences with Joseph, and use the knowledge gained from attending parent support groups when I begin my Master’s degree next year. Once I graduate, I’d like to be able to offer families the support and advice I would have appreciated while Joseph was in early years’ education.
A practical Christmas While I was growing up, I absolutely loved Christmas. For me, it was all about a perfectly symmetrical tree, hot chocolate on Christmas Eve, followed by hanging out a stocking for Santa’s arrival. I couldn’t wait to make it the same magical experience for Joseph. When he was two and a half, I made glitter Santa footprints leading to his presents. But Joseph insisted on me getting out the Hoover and was oblivious to the pile of presents waiting for him – they were still there at the end of the day. Soon after this, he was referred for an autism assessment and it became clearer why he had reacted like this. It made me wonder if Joseph would ever experience the magic of Christmas in the way I did. I remember seeing friends post pictures of their families around the table and running downstairs to see if Santa had been, and feeling sad that our Christmas was not like this. However, last year, I decided to change my expectations. I now understand that if Joseph doesn’t feel secure, Christmas can be an unsettling and confusing time. We now celebrate a practical Christmas that he can enjoy in his own way. We still have
Gemma’s tips for managing Christmas
1
Use alternatives to wrapping paper
Last year we trialled some wrapped gifts and boxed gifts, and Joseph preferred the boxed ones
2
Routine While it’s a
time of celebration and special occasions, try to maintain as much of the normal routine as possible
3
Visuals Use visuals and
‘now and next’ boards to explain upcoming changes
4
Food Plan the meal well ahead of time and introduce new foods slowly. Always keep some favourite foods in the cupboard
5
Gifts Ask relatives to purchase specific gifts so that these are not a surprise on the day
6
Relatives If visiting
relatives, advise them of any sensory issues and try to arrange a quiet area if possible
a tree, but we gradually add decorations chosen by Joseph. We’ll buy him gifts, but we don’t write Christmas lists as he doesn’t understand the concept of asking for gifts. When we visited Santa last year, Joseph said “hello mate”, gave him a high five and left without his present! While it’s not the Christmas I experienced as a child, a Christmas that is perfect for Joseph will always be perfect for me. This year, the magic of Christmas will be seeing Joseph with a smile on his face. Gemma and Joseph feature in our Christmas appeal this year. You can support the appeal by visiting www.autism.org.uk/appeal
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How high will you climb for Team Autism? Be part of one of our incredible trekking teams next spring or summer! Yorkshire three peaks 19 May www.autism.org.uk/y3p19 Snowdon 10 and 11 August www.autism.org.uk/snowdon19 £30 registration, £250 fundraising The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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Places available in our homes Our services give autistic adults expert support to achieve their personal goals and thrive in the community. Current places available include: Residential services • Croydon • Kent • Lancashire • Manchester • Neath • Somerset • South Gloucestershire • Yorkshire and Humberside Supported living services • Cambridgeshire • Devon • Lancashire • Northamptonshire
Find out more:
www.autism.org.uk/placements The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
SEN 107x177 NAS Services ad Nov18.indd 2
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How to...
32 Your Autism
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How to...
Boost your social skills If you, or the person you care for, would like help with social skills, then read on to find out what worked for Elysia. Michelle Jones, our Lancashire Centre Manager, explains all Elysia is now comfortable Elysia is 25 and lives at home with the group and will begin with her dad, Kevin. She gained conversations with other people. seven GCSEs at school and a She finds it easier to cope with qualification in animal care at crowds and noise, and is more college. Elysia is autistic, and willing to try new things. For also has OCD and anxiety, with instance, she wanted to extend her sensitivity to bright lights and day at the centre, but had never sudden loud noises. She began been to the afternoon activity coming to the social skills session session, which was trampolining. at our Lancashire Centre in 2016. We asked if she would like Initially, Elysia found to observe it – with no it difficult to go to pressure to join in. She the centre because Find your local National did, and now joins the of her anxiety, the Autistic Society group trampolining noise level and the Centre at www. each day. number of people autism.org.uk/ there. We provided centres structure in the social Eating with others skills sessions to enable Elysia didn’t like to eat Elysia to predict what in front of others. When would happen. Staff ensured she first came to the centre, that she was familiar with the she had her lunch in a different group before asking her direct room to the rest of the group. We questions. Elysia was encouraged supported her by ensuring there gradually to increase her was no pressure to join everyone interaction with other members. for lunch, and we found a quieter The group was given opportunities space for her. We monitored within the local community, such Elysia’s progress within her group as shopping trips, to practise and then suggested that we sit in social skills. the same room with her. Over time,
Read our information for adults about making friends and socialising at www.autism.org.uk/socialskills
ABOVE: “This picture says everything,” says Kevin, Elysia’s dad. “Elysia looks relaxed, allowed her picture to be taken and, even with a few people around, she looks comfortable.”
Elysia felt comfortable with this. Over the following months, Elysia started to join one or two people for lunch, and now she chooses to sit with the group. Elysia explains: “Before the group, I was very isolated and had no friends, and they helped me. Now I feel confidence to try things that may be out of my comfort zone.” Kevin added: “The biggest change with Elysia is with her social skills. She is much better at communicating and understanding others. She used to sit in the back of the car with sun blinds on the windows so no-one could see her. Now, she sits in the front of the car watching the world go by.” Winter 2018 33
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Onwards and upwards for Neil
Neil, a person we support, was diagnosed with autism when he was 16. Since moving to one of our care homes in London, 11 years ago, his life has completely changed – for the better. When Neil was younger, the school he attended did not understand his educational needs. After leaving school in year 10, Neil decided to carry on studying and soon enrolled to a college During this time, Neil was alcohol dependant and was going through some tough times with his current care provider. He decided it was time for a change and took control of his life and moved to Sheringham Avenue. Since he moved into Sheringham Avenue in 2007, Neil is much happier and has completely stopped drinking alcohol – an achievement he is very proud of.
“Since I have lived in Sheringham, I have gained good support and guidance and have learnt new skills. My structure through the week and weekend helps me to keep my mind busy so I do not go into my own thoughts.”
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volunteering in a charity shop as well as volunteering in a care home for the elderly. A big passion for Neil is travel and with help from his support team, every year he visits a Greece, Turkey, Tunisia, Morocco, Cyprus and Portugal. well‌with the support I receive I am able to live a good life and adapt and cope with my
Specialist autism support We support over 720 autistic people across the UK and have 37 specialist autism services that are either accredited or working towards accreditation with the National Autistic Society.
Get in touch 0800 035 3776 referrals@voyagecare.com www.voyagecare.com
We can support you in many ways, such as at home, going Whatever you’re doing, we want you to receive great quality care and support.
Contact our friendly enquiry team to discuss how we can support you or a loved one.
*Data correct at June 2018
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Advice
Adult-ing with autism Are you a young autistic adult? Sam, our Autism Helpline Adviser, gives advice on taking on life’s major challenges and finding your place in the adult world Work, leisure and love are often big components of a modern adult’s life, and it is no different for autistic adults. But as demanding – and exciting – as these might be, the challenges may be quite different for autistic people. 36 Your Autism
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Advice
Employment
It may not be uncommon for an autistic adult to find the vague criteria of job applications frustrating, and to feel misunderstood and self-conscious during interviews. Even when they have a job, it may be that they feel as though they are too stressed to enjoy the fruits of being in employment. On account of this, it can be easy to feel that businesses and organisations haven’t got a place for autistic people and, with only 16% of autistic people in fulltime work, the statistics would corroborate this. Sadly, the realisation of this can sometimes lead to the very destructive belief – for an autistic adult – that they have little worth. This is patently false. When this belief rears its ugly head, it may be good to remember that people are most useful when they are employed in activities that are suited to their natural skills and interests. To adapt the famous analogy often attributed to Einstein, we would get far less use out of a fish if we needed
an animal that could climb, but when an animal who can swim is what we need, we would be glad of a fish. But how do we know what our natural skills and interests are? One thing a person can do is try to catch themselves in moments when they feel alive in a situation, where they are entirely engaged, with no anxiety or doubt. It may seem as though these activities are of little significance: for instance, being the kindest person in the room; being the one to mend the broken tap; beating your personal best cycling or running; or building a wondrous world in Minecraft. This will not guarantee employment, of course, and it’s not to say that even good employment won’t come with its challenges. But it reverses the equation that ‘my work = my place’, and turns the focus to a person’s already established place and worth in the world. You can get more help with jobs from our charity’s new, free employment module – find out more on page 24.
People are most useful when they are employed in activities suited to their natural skills and interests
Leisure
Odd as it may sound, leisure can, in fact, be quite stressful for all of us. Should I be travelling? Do I spend too much time on my computer? Am I getting the right balance between work, time with friends, and goals? If the social world is already a little perplexing and overwhelming to an autistic adult, this stress can be accompanied by guilt. Additional questions potentially come to mind: Why don’t I see the purpose of going out and drinking? Is it weird that I need more time by myself? In fact, am I weird? It may be helpful to remember that, in its Latin origins, ‘leisure’ means ‘to be permitted’. We all have our individual place in the world, and need time to explore and express this, and that is what leisure time gives us. It should not cause guilt. One thing an autistic adult could do is to indulge at least once a day in something that really makes them feel they are permitted to be themselves. If a person is struggling to figure out what this might be, they could remember Winter 2018 37
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Advice
what they adored doing when they were younger – something they possibly learned to hide. It could have been cooking, making up imaginary worlds, dancing, singing in the mirror, building machines and contraptions, or just daydreaming. This can serve as a reminder of what it feels like to be permitted to explore your own individual place – and experiences – in life.
Dating
Clinical psychologist Tony Attwood talks about movies and television
often being a major source of understanding for autistic people when it comes to dating and love*. Many autistic people find their main guidance on how relationships should pan out from favourite media they have grown up with. Apps such as Instagram and Tinder, with their displays of the best of people’s lives, could also be used in a similar way. This may be a very romantic way to approach relationships, driven by honourable aims, but clearly this can present its own problems. After all, we need to live out our own life story and, while this may occasionally burst out in beautiful movie-like moments, it will more often be filled with practicalities, tasks and, like everything else, complex social situations. It could, therefore, be helpful for a person to make a list of what – on a day-to-day basis – they would have to do to live the lives and relationships of a favourite character in a movie, book or social media. The realisation that the everyday routines of characters in media and social media may actually be intolerable, stressful or boring – and out of line with all the things they like to do to feel comfortable and happy – may help an autistic adult see how suited they are to their own life. It can open them up to the exciting possibilities of how relationships may fit into their already interesting story, if a relationship has to be part of it at all. Read more at www.autism. org.uk/adults
*Attwood, The Complete Guide to Asperger’s Syndrome: p306, 2006.
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Meet the team
“The best part is making a difference” Meet Louise Pay, avid reader, psychology student and mum to Anthony, who is autistic. Louise volunteers at our Parent to Parent service, where she lends a listening ear to fellow parents of autistic children
What’s your role? My main role is listening to other autism parents up and down the country, and offering advice where needed. This includes discussing strategies on dealing with the autistic child’s sensory and communication issues, as well as recommending relevant services. As a parent, I have insight into raising an autistic child, and am able to use my experiences to help others.
What inspired you to get involved? I used the Parent to Parent service myself. I was going through a particularly challenging time with my son, Anthony, and at the time it felt very lonely and isolating. For the first time, it was reassuring to know that someone else had been through a similar experience. I’ve since been volunteering for the service for five years. What are the most rewarding and challenging aspects of your role? The best part is being able to make a positive difference to somebody’s day, however minor it may seem. Volunteering can also be challenging, particularly when a parent becomes upset. Although this can be very difficult, it’s always nice when you can help them and know that you’ve made that person feel a little better.
We are so grateful to Louise and to parents like her who volunteer for the Parent to Parent service. If you would like to volunteer or use our service, visit www.autism.org.uk/P2P or call 0808 800 4106 to find out more.
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Notebook
Everything you need to read, do or see
PDA by PDAers
AUTHOR: Compiled by Sally Cat PUBLISHER: Jessica Kingsley PRICE: £14.99 VERDICT: An important book for people affected by PDA My vital questions about pathological demand avoidance (PDA) have been answered at last, thanks to a Facebook group of PDAers who have produced this book to introduce readers to their difficult, complex and varied lives. Conversations – sometimes funny, sometimes deeply moving – reveal raw life experiences of contributors at different stages of understanding themselves. Informative content on PDA, Asperger syndrome and difference makes this an important book for people affected – and anyone wanting to live in a humane society. Essential for professionals in law, education, health and social work. Evelyn Proctor (pen name), Your Autism reader
Become a reviewer
Would you like to join our reviewer list for books and products? Email us at YourAutismMag@nas.org.uk
Please Stand By (DVD)
CAST: Dakota Fanning, Toni Collette, Alice Eve PRICE: £13 VERDICT: A cute movie with touching moments Please Stand By is an American road trip movie about a young autistic woman, Wendy, who runs away from her residential home and heads to Los Angeles to submit her manuscript to a Star Trek writing competition. Directed by Ben Lewin and written by Michael Golamco, it stars Dakota Fanning as Wendy and Toni Collette as her care worker, Scottie. Highlights include Pete, the adorable residential home dog, and a sympathetic policeman who calms Wendy down by talking to her in Klingon. Fiona Grace, Brand and Content Manager, National Autistic Society
Giveaways
We have 20 copies of A Journey with Brendan by Dr May Ng to give away to members. To stand a chance of winning, send your name by email to YourAutismMag@nas.org.uk by 31 January 2019, quoting ‘Brendan’. The winner will be announced in the next issue. The winner of last quarter’s competition to win a copy of Coming Home to Autism by Tara Leniston and Rhian Grounds is Katie Hobson from Sunderland. Well done Katie!
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Spectrum Night Walks London Glasgow Manchester Belfast Cardiff
Take to the streets and join the hundreds of amazing warriors walking the night to spread autism awareness and raise vital funds to help the 700,000 autistic adults and children in the UK. Share your stories, meet other people. Get involved. Walk with us on Saturday 6 April 2019.
www.autism.org.uk/spectrumnightwalks
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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Notebook
Our six favourite…
autism-friendly Christmas gifts for valuable relaxation and sensory feedback.
4
Pegboard/ jigsaws
1
Sony WHH900 wireless headphones
SuperOwl: Being different makes you super AUTHOR: Lester Jones, based on Steven Dodd’s life story PUBLISHER: i2i Publishing Manchester PRICE: £6.99 VERDICT: Inspiring children’s book SuperOwl is the story of Little Bro’, a small owlet who is autistic. He loves to collect things, but gets confused if he has to think about too many things at once. In a garden world, he and his sister Harley meet strange animals, encounter a dangerous falcon and rescue a tiny dormouse from a mysterious old house. The grand finale is the Garden ‘Owlympics’. This charming illustrated children’s book is based on the life story of Steven Dodd, an autistic man who won a medal in kayaking at the Special Olympics World Games in 2015 and now competes in powerlifting. Steven was diagnosed with Asperger syndrome aged 24, and post-traumatic stress disorder shortly after. Says Steven: “I am driven by my passion to achieve and help others do the same.” This book should inspire autistic children to achieve great things, too. Suzanne Westbury, Editor of Your Autism magazine
Perfect for blocking out noise and preventing sensory overload. Useful with tablets on car journeys, too. Available from John Lewis, £190
Great for developing those fine motor skills and a sense of achievement. Easy to tailor to different interests, too.
5
Software for your tablet
Choose character software such as Pingu, Dr Seuss or Disney Magic Artist, or a variety of software to develop vocabulary such as the ‘Talking’ animated alphabet.
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Pop-up den
2
Trampoline
A trampoline for the garden or a mini version for inside can provide exercise, sensory stimulation and a great outlet to let off steam. Available from Argos, £30.
Most people won’t have space for a sensory room, so this pop-up cave is the next best thing. Use light-up objects inside or even a projector. Available from www. specialneedstoys.com, £39.95
3
Bubble tube
Available in a variety of sizes and different price levels
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Snapshot
I’m a… kickboxer
Hermione Cameron meets Anthony Casey, a talented young champion whose career has kicked off in a spectacular way Anthony was diagnosed with autism and a speech and language disorder at the age of four and, according to his mother Jana (a member of our charity’s Merton branch), did not really speak until he was eight. Primary school was a struggle for Anthony because of his speech delay and general communication difficulties. But things improved drastically when he joined a specialist secondary school, which gave him the support he needed. Five years ago, Anthony joined a local kickboxing club after being introduced to the sport by two local coaches who visited his school. While he initially struggled with the sport, Anthony persevered, fighting through his frustrations to become Ireland’s 2017 champion. This was followed with victory at several national and international competitions, and entry into two world championships. Anthony, who is now 13, said: “I was eight when I started kickboxing and, since then, my coaches Craig and Rachel have really helped me gain confidence and make lots of friends.”
Joint challenge To add to his list of successes – and to the stamps on his passport – Anthony represented England in the kickboxing world championships in Jamaica last September, and even earned the money to buy his own plane ticket. The Casey family also took on a joint challenge with a 10k run on 20 October 2018 to raise money for our charity. We’re
From top: Anthony with his trophy; Anthony celebrating his win at the Irish Open 2017
delighted that Anthony, Jana – a keen runner – and Jana’s younger son, Joseph (who is autistic and non-verbal), ran together as part of Team Autism. It has certainly been an incredible few years for Anthony and his family. In his own words: “I’ve got better since I was eight years old and I couldn’t talk, but now I have made lots of friends. I think I have a bright future.”
46 Your Autism
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28/11/2018 12:55
Autism Winter 2018_46-48 Im a.indd 47
28/11/2018 12:55
Autism Winter 2018_46-48 Im a.indd 48
28/11/2018 12:55