YOUR Spring 2019
The Autism Act
10 years on – what still needs to be done?
Rainbow fish
Finding their niche
Adam and Guy on setting up a comic shop
Autism Spring 2019_01 Cover v2.indd 1
Meet Love Island’s Niall Aslam
Plus
Autism and ADHD, helping your child sleep and online safety
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Become autism-friendly
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YOUR
Niall opens up
Spring 2019 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk
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Contributors Hermione Cameron, Florence Leslie, Simon Ly HEAD OFFICE 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 AND PRODUCTION CPL (Cambridge Publishers Ltd) 01223 378000 www.cpl.co.uk 1 Cambridge Technopark, Newmarket Road, Cambridge CB5 8PB PRINT Warners Midlands 01778 391000 National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG © Your Autism Magazine Spring Vol 53, No 1 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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Brothers make business sense
Contents
14
Real life
13
What’s new?
04
Help your child sleep
28
Mental health support
11
Readers to the rescue
30
My diagnosis
13
Avoid trouble online
32
Running a comic shop
14
Getting support at home
36
Autism Act: 10 years on
18
Autism Friendly Award
41
Niall Aslam
22
Notebook
43
Autism and ADHD
24
I’m a... parkrunner
46
A round-up of the latest news
Getting the right help
Florence Leslie shares her story
How Adam and Guy started up
What still needs to be done
Life after Love Island
Strategies to help
Tips for a good bedtime routine
Home schooling tips
Be aware of the dangers
Help from social services
Daniel Cadey tells us more
Things to read, do and see
Meet runner Ellie Pinnington
Approximately 30% of
autistic people ADHD
have
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What’s new?
Get in touch!
Our roundup of the latest news and views
The Government has published proposals to introduce mandatory autism and learning disability training for all health and care staff in England. This is a welcome move that could mean all NHS staff have the training they need to support autistic people. The proposals honour a commitment made by the Minister for Care, Caroline Dinenage MP, in November 2018, during a debate in Parliament. The debate was organised in response to a petition started by Paula McGowan, following the death of her son Oliver in November 2016. Thousands of autistic people and their families backed this petition, along with our charity.
iStock.com / Marbury
Health and care staff to get autism training
Jane Harris, our Director of External Affairs, said: “This training could improve the health of hundreds of thousands of autistic people. Too often, doctors, nurses and other professionals don’t understand how autistic people communicate, or how
bright lights and noise can stop them getting the care they need.” Have your say by 12 April at www.gov.uk/government/ consultations/learningdisability-and-autism-trainingfor-health-and-care-staff
News from our Chief Executive Mark Lever, our Chief Executive since 2008, is leaving our charity in May. Mark said: “The first campaign I worked on was I Exist, which was aimed at persuading people that autism isn’t something you ‘grow out of’. “Eleven years on, huge challenges still exist, but things have moved on and I feel privileged to have played a role in these changes.” Read more in our next issue, and at www.autism.org.uk/MarkLever
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Better educated We recently published a good practice guide for teachers, parents and local education commissioners. It shows examples of schools, colleges and local authorities that are effectively supporting their autistic pupils. Download a free copy at www.autism.
org.uk/educationguide
World Autism Awareness Week is back, 1-7 April 2019 World Autism Awareness Week is a hugely important time for the 700,000 autistic adults and children in the UK. It’s a great opportunity to increase conversations about autism, and help us create a society that works for autistic people. This year’s events include Spectrum Night Walks on Saturday 6 April, where hundreds of passionate walkers will be raising money and awareness in London, Manchester, Glasgow, Cardiff and Belfast. Schools across the UK will be fundraising and using our lesson plans to teach pupils about autism. Every school that signs up will be automatically entered into our exciting prize draw to win a school visit from TV personality Anne Hegerty. To receive your free fundraising pack and join the thousands of people making a difference during the week, sign up at www.autism.org.uk/waaw
Rights for families Late in March, an important case on the rights of families to be appointed as a ‘welfare deputy’ when an individual lacks capacity will be heard in the High Court. We support this case and will bring you more information about it on our website when the case is heard and there is a verdict.
Declare your care The Care Quality Commission’s new campaign, Declare Your Care, is calling on people to speak up about their experiences of health and social care. New research shows that almost seven million people in England who have used health or social care services in the past five years have had concerns about their care, but never raised them, and more than half regretted not doing so. Read more and share your experiences at www.cqc.org.uk/DeclareYourCare Spring 2019 5
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Join our Facebook broadcast in March
School of thought We’re really excited that our new autismspecific school is scheduled to open in the second half of the 2019/20 academic year in Lambeth, south London. The Vanguard School will eventually cater for up to 78 students aged between 11 and 19. The school will grow gradually, with a phased intake of students, starting with years seven and eight. The building is designed to help autistic students thrive and achieve their goals. As well as 14 classrooms, the school will also contain a soft play area, sensory room, library and two therapy rooms. To find out more about our Vanguard School and to sign up for updates on the school’s development, visit www.autism.
org.uk/vanguard
Building the Vanguard School, south London
We’d like to invite you to join us on our Facebook page for a special live event, starting at 7pm on 13 March. We’ll be live streaming our experts, as well as speaking to autistic people and families about what it means to get an autism diagnosis. We’ll be covering the different routes available to getting a diagnosis and what an autism assessment should look like. Missed the event? You can watch it on demand on our website. Find out more at www.autism.org.uk/live
Teenage member wins national award Congratulations to autistic teenager Osian Wilson for winning the National Trust’s UK Young Volunteer Award. Osian has volunteered in the Peak District for four years, helping with wildlife surveys, litter picking and woodland management, which helps him cope with anxiety. Osian Wilson “When I was ill and could no on the moors longer go to school, the moors saved me,” says Osian. “Now I want to save them. On the moors with the deer, the birds and the noise of the wind, I feel calm.” The 17-year-old’s passion for the countryside has inspired him to campaign against littering. He aims to get 100,000 signatures at https://petition.parliament.uk/ petitions/232897
6 Your Autism Autism
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Ride London 2019 The world’s greatest festival of cycling Arran Linton-Smith will be taking part in his 7th straight Ride London since receiving his autism diagnosis in 2012. SIGN UP NOW and join Arran along with many others as part of Team Autism. Event date: Sunday 4 August www.autism.org.uk/RideLondon
Having specialist education close to home is part of MyProgress ®
Welcome to our new school The autism-specific school is opening in Lambeth, South London to students aged 11-19. Find out more about MyProgress® and register for updates at www.autism.org.uk/vanguard.
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The Vanguard School is part of the network of free schools and academies owned and operated by the NAS Academies Trust, a company limited by guarantee in England (No 7954396). 1336 100918
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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Diary dates
What to do and where to go
1 – 7 April 2019
World Autism Awareness Week
Our favourite week is back, and we’re hoping it will be bigger and better than ever! We want to do even more to help create a society that works for autistic people. So join us and help raise some much-needed cash and awareness in your workplace, school or local club. www.autism.org.uk/waaw
28 April 2019
London Marathon
We’re super excited to support our Team Autism runners at this year’s London Marathon. You can join us on the day to shout, scream and clap as part of our personal cheer squad. Get in touch with events@nas.org.uk
June 2019
10-11 August 2019
in association with
The Autism Show
The National Event for Autism
London
14-15 June 2019 | ExCeL
Birmingham 21-22 June 2019 | NEC
Manchester
28 - 29 June 2019 | EventCity
Visit The Autism Show on 14-15 June in London, 21-22 June in www.autismshow.co.uk Birmingham, or 28-29 June in Manchester, for inspiring talks and practical advice. This is the largest event in the UK dedicated to autism, in association with our charity. You’ll hear from autistic speakers, the UK’s leading autism experts, and be able to get one-toone specialist advice. Our members can save 20% off the door price by using code NAS19. Book at https:// autismshow.co.uk HEAR THE UK’S LEADING AUTISM PROFESSIONALS
LEARN NEW STRATEGIES & APPROACHES
LISTEN TO ADULTS ON THE AUTISM SPECTRUM
ACCESS ONE TO ONE SPECIALIST ADVICE
INTERACT WITH INNOVATIVE FEATURES
DISCOVER 100s OF PRODUCTS & SERVICES
Book your tickets now and save
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We can’t wait to trek Mount Snowdon and reach the top with Team Autism this summer! If you’d like to experience stunning views over Snowdonia National Park, then join us in this incredible challenge at www.autism.org. uk/snowdon19
13 October 2019
Royal Parks Half Marathon Moving into its 11th year, this award-winning half marathon covers four of London’s beautiful Royal Parks, including Hyde Park and Kensington Gardens, as well as passing world famous landmarks such as Buckingham Palace. www.autism.org.uk/ royalparks
2 June 2019
Severn Bridge Sportive and Castle Combe Family Cycling Day
This sportive offers a 60- or 100-mile route through some of the UK’s best countryside. The Family Cycling Day is the sister event, allowing keen cyclists of all ages and abilities to take part in a day of fun, familyfriendly cycling. www.autism. org.uk/severn-bridge
Snowdon
Did you know? 8 June 2019
Jurassic Coast
Our new trek caters for all abilities with 20km and 30km routes. Both wind their way along the beautiful Jurassic Coast and end at the stunning Durdle Door, Dorset – the perfect backdrop to celebrate your incredible achievement. www.autism.org.uk/jurassic
£5 could help a parent, or a newly diagnosed autistic person, have a phone call with one of our specialist helpline advisers £40 could pay for a one-hour consultation with our Education Rights Service £200 could fund our Parent to Parent Service for a whole day Spring 2019 9
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Research
Mental health support Recent research from Louise Camm-Crosbie and Louise Bradley from Coventry University; Rebecca Shaw from Coventry-Warwickshire Partnership NHS Trust; Simon BaronCohen from Cambridge University, and Sarah Cassidy of Coventry University into autistic adults’ experiences of treatment and support for mental health issues has found that many don’t get the help they need. The results are from an online survey of 200 autistic adults, designed with input from autistic people. The majority of participants reported needing support with mental health, but well under half actually received it. Participants described being excluded from mental health services for a number of reasons. First, they described a gap in available mental health services for autistic adults without learning disabilities. Secondly, assumptions were made about autistic people
Read the research at bit.ly/autismmental-health
iStock .com / Sturti
Findings show that autistic adults are excluded from some services
‘coping’, when they were struggling. Long waiting lists and lack of funding for support or treatment were described, even for those experiencing suicidal thoughts. The process of asking for treatment felt daunting and complex. One participant said: “I don’t know how or what I would say, or how I would explain, or then what would happen.” Communication difficulties mounted once people were face-to-face with a professional: “I felt like I was having a breakdown inside, but I didn’t know how to make the inside feelings show to other people.” Participants said it took much longer to establish a rapport with their therapist or support worker, but there were too few sessions, which caused anxiety when they came to an end.
However, 63 participants did report positive experiences of mental health support. Some wrote of overcoming issues from “phobias and anxieties” and “I now have my OCD under control”.
What next?
Results have strong implications for health services. The authors say that there needs to be greater availability of appropriate services for autistic peoples’ diverse needs, so they don’t ‘slip through the net’. Clinicians need to know more about mental health and autism. The authors conclude: “Given the potentially tragic consequences of failing to support autistic people and treat mental health problems, it is crucial that services are trained in autism and prepared to adapt to autistic people’s needs.”
References: Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2018). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality, Autism.
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My diagnosis
“I could no longer hide how I felt” Florence Leslie, External Affairs Assistant – Storyteller at our charity, kicks off a new column where readers share their diagnosis stories I’m starting this column with a story familiar to many women on the autism spectrum, although I didn’t know it at the time. I was parked barely two streets away from my house, asking my (baffled) driving instructor why, at age 21, I still confused my left and right, and why I couldn’t remember basic instructions. I was trying to get back on my feet after being diagnosed with severe depression at university, but I was no longer able to hide how I felt – which was ‘different’. I was assessed for autism and dyspraxia when I was a teenager because I was
Read more
Just received a diagnosis? Read our advice on some steps you can take at www.autism.org.uk/diagnosis Want to share your diagnosis story here? Email YourAutismMag@nas.org.uk
having trouble fitting in at school, but I was dismissed as ‘quirky’. I became expert at covering up my difficulties, retaking exams and, in the process, turning from a lively, precocious person into someone who was afraid to speak. Although I began studying a subject I loved and made a group of friends, I was undergoing rounds of blood tests to find out why I was so exhausted. It was a traumatic experience.
Expressing myself One day, I ticked an arbitrary box on a questionnaire stating that I had difficulty reading other people’s facial expressions. The student support worker considered that I might be autistic, and scheduled me for an assessment. This was a routine moment in his day job, but I believe it saved my life. The profile of women on the autism spectrum has risen dramatically in the three years since I was diagnosed, thanks to the tireless campaigning of autistic women demanding better support. The power of sharing our stories about a condition that can be isolating means that others feel less alone. Spring 2019 13
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Real life
“Now they run their own comic shop”
Angela Makey, a National Autistic Society member for more than 22 years, tells us about her autistic sons – and how they started their own business I have two autistic sons, Adam and Guy. They were both struggling for work, and I’d read that only around 16% of autistic adults are in full-time paid work. They’d gained some experience, but always found it difficult to cope and settle. Guy did food technology at college and managed to get some work in retail and food manufacturing. He said that he struggled with “knowing what to say, and the constant changes in shifts and days were stressful”. Adam had worked in a few retail jobs and always felt that he needed more time to practise and learn skills – time that he wasn’t given. He also finds concentrating and filtering out everything around him really tiring. Their employers weren’t particularly accommodating, which meant that there were lots of interviews, which caused even more stress. They both loved comic books, and one day Adam came to me with the idea of opening a comic store. I thought he was joking. I worried about all the challenges and the struggles that they might come up against, but eventually I came round to it.
Part of the community
Adam and Guy outside their shop
Adam was right. It was a great opportunity, and the chance to do something that they were interested in. The shop would get them talking to customers, and make them feel part of the community. Both Adam and Guy love comics. Guy just loves “the blend of
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images and words to create new exciting worlds and characters”. It helps that feelings and emotions are clearly signposted, and that young and old alike can enjoy them. They’d always used comics to help them understand the world. The shop would help them share their interests with the wider world. The knowledge they had built up could be put to good use, giving reading recommendations to the customers. One of Guy’s favourite characters is Daredevil. He finds it interesting how his blindness not only affects how he navigates tasks, but also while fighting as a vigilante. For Adam, comics “are a reminder that it’s ok to not be like everyone else”.
An autism-friendly space
An opportunity came up with a shop on the high street in Huntingdon, not far from where we live. Adam and Guy visited it and fell in love immediately. It needed a lot of work because it was a bright pink boutique, but the place had a wonderful sense of calm, welcome and cosiness. We renovated the shop, and it turned out to be a timberframed building from 1573. We removed the plasterboard, cleaned it up and made the space as autism-friendly as we possibly could. There are quiet areas, spaces to sit and lie down, a courtyard garden and, of course, the shop is run by two people who
Adam and Guy chat to customer Dan Flint
“One day, Adam came to me with the idea of opening a comic store. I thought he was joking” Angela
are experts – and at ease in their space. As it’s an old building, there are plenty of nooks and crannies for reading, and low stimulation areas so there aren’t too many distractions. Adam and Guy are superb at judging customers’ needs for space or interaction,
and give them all the time in the world to talk about their favourite films, characters, games and whatever they want. There is no urge to sell. It’s more important for customers to feel comfortable. We had support from local business mentors who guided us through the early stages. Adam and Guy attended business and new start-up workshops to help them understand what they needed to do to make the shop work. There are a lot of people out there who want to help, but the difficulty is finding them.
Playing to their strengths
We try to divide the tasks. Guy sorts out new stock and is great at dealing with the customers. Adam notes: “We have lots of customers who come in on a Saturday and ask for Guy if he isn’t working that day!” Adam needs a bit more structure to his day. He manages the cash flow and mainly deals with the suppliers and payments. The suppliers have all been great, and very supportive. They still copy me in to emails when I’m needed, but it’s mainly down to Spring 2019 15
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Adam. He’s much better with groups outside of the shop than in it. He gets involved in local learning groups, comic book conventions and partner events at the cinema. They‘re both very punctual and reliable, and immensely patient with customers of all ages. They both like to keep an eye on the stocktaking, and get really excited about new items to order. In the beginning, they really struggled with customer payments, which is a problem when you’re running a shop! So we invested in a till where barcodes, prices and the card reader machine were all integrated. This made life a lot easier, because no numbers were needed at the point of sale. Little things like that help them concentrate on what they are good at.
Where we are today
Since the shop opened in November 2011, it’s been a huge success. Adam and Guy only take a small wage, and we’ve always remained in the black. We’ve come such a long way since we opened. The shop has changed so much and we’re now offering internships to people in a similar position to help them gain experience. It’s really satisfying to see Adam and Guy succeeding and sharing their knowledge with people. It’s given them control to create an environment that fits them, and seeing customers enjoy the shop means that they’re doing something right. One of Guy’s favourite times was when we held a music night. Guy says: “The event was so packed that the whole shop was filled with people. We had to get very creative when it came to seating.” We certainly want to do more events like that in the future. Adam and Guy take other people at face value and don’t judge. They understand what it means to not ‘fit in’ socially. Now they run their own shop, they have the freedom to express themselves and welcome people from all backgrounds. They’ve created a great environment for
Angela, Guy and Adam’s tips for starting a new business Be yourself It’s important to know what you are good at, and what you need to delegate to others (even if this is short term) Do your research
Research what you are offering, what people really want, and be able to adapt to changing tastes
Take small steps Break
down tasks into small steps to help you build confidence. Just because something doesn’t go your way the first time, it’s worth trying again
Get support Identify those people close to you who are willing to share their contacts and experience, and have the patience to mentor over time. It’s important to create opportunities to interact with the local community Communicate Decide
how to share information, as there are so many choices. We got muddled with emails, texts and phone calls, and it all got too much. Be really clear how you want to communicate, and keep on top of it.
people to feel comfortable in, and there are lots of people who are full of praise for their work. For Adam, it’s important that “every customer is treated the same. One of our strengths is treating everyone fairly, and taking time to get to know them.”
Read our advice about work at www.autism.org.uk/ employment
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Campaigns
“My diagnosis felt like a moment of enlightenment” This year is the 10th anniversary of the Autism Act, a landmark in the battle to improve the lives of autistic adults and their families in England. Chris Goodchild, one of our Autistic Ambassadors, writes about his diagnosis and, as the Government reviews the implementation of the Act, looks at what still needs to be done I was diagnosed with autism in 2007 at the age of 40 – just two years before the Autism Act made it law for every area in the country to have an adult autism diagnosis service. The reason it took so long for me to get an official diagnosis is quite simple: I was a good actor. However, my habits were so ingrained I did not know that I was acting.
What is the Autism Act? In 2009, the National Autistic Society made history by leading a campaign to get the Government to recognise and support autistic adults through an Autism Act in England, leading to an autism strategy. It is the only act dedicated to improving support and services for one disability. Late last year, the Government announced that, for the first time, the autism strategy would be extended to cover children. This is a huge opportunity to make sure that autistic children are able to get the support they need, too.
This is the predicament that many autistic people face. What I regarded as one of my greatest achievements – my adaptive skills – became my greatest impediment and barrier in being diagnosed and getting the help I so desperately needed. However, until I was able to call my condition by its rightful name, I was just continuing to unconsciously overcompensate for every gesture, movement and mannerism in the world. The extent to which I was abused and humiliated for my unusual ways when I was a child became the extent to which I would adapt to survive in a world that seemed forever beyond my grasp. As a result, I suffered with severe and debilitating anxiety and depression for most of my adult life. My experience of being diagnosed as autistic was life changing. “I am seen, therefore I am,” said the paediatrician and psychoanalyst D W Winnicott, and this ‘being seen’ empowered me to live more on life’s terms and not the superimposed life I forced upon myself before my diagnosis.
What needs to change
Autistic people shouldn’t have to face long waits for a diagnosis, and neither should it be so difficult to access post-diagnostic support. As an Autistic Ambassador for the National Autistic Society, I feel passionate about sharing my experiences in the hope that others will not have to suffer through such ignorance, and that the Government will address these issues when they review the autism strategy later this year. One of the things that saddens me enormously is
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Autistic people shouldn’t have to face long waits for a diagnosis, and neither should it be so difficult to access postdiagnostic support
Chris Goodchild
The Act’s impact In 2009, most areas in England didn’t have an adult diagnosis service. Now almost all (93%) do. Nearly every council has a designated member to lead the development of adult autism services. And, during a time when council services have faced cuts, we have been able to use the Autism Act’s duties to save services. In spite of some improvements, we know there is much more to do. Without our supporters, we wouldn’t have got the Autism Act through Parliament. We won’t be able to improve the strategy and statutory guidance without your help again.
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and Ludwig Wittgenstein, to name just a few. Such diversity can never be confined to, nor narrowly defined by, any particular field. It’s important that the Government understands this diversity, and the huge positives autistic people can and do bring to society, as they review the implementation of the Autism Act and set out an updated autism strategy. For me, autism is a way of being and, as such, can never adequately be conveyed through theories, concepts or analysis. Albert Einstein said: “I didn’t arrive at my understanding of the fundamental laws of the universe through my rational mind.” And you know exactly where he was coming from.
The reason it took so long for me to get an official diagnosis is quite simple: I was a good actor how complicated it still is to be assessed for autistic adults. I often hear people saying that doctors are over-diagnosing, but there are potentially hundreds of thousands of people like me whose hidden difficulties are not being understood because of their highly adaptive skills, born out of adversity. Who I am is way beyond the remit of an autism diagnosis. However, until I was able to call my condition by its rightful name and understand it at depth, I did not stand a chance of overcoming its limitations. How could I move beyond something I was always unconsciously over-compensating for? My autism diagnosis felt like a moment of enlightenment, whereby my humanity was deeply understood and my dignity restored.
Disability or gift?
Autism is a spectrum condition. For some it is a disability, while for others it is a gift. For me, autism is a painful gift. So, in 2009, two years after my formal diagnosis, I published an autobiographical account of my life called just that: A Painful Gift. People on the autism spectrum offer a unique and rich dimension to humanity as a whole, which is not just limited to the areas of science, maths, information technology and engineering. For it is equally true to say that among people on the spectrum there are numerous contemplatives like myself. In the areas of poetry and literature, there is a very long list of writers who were possibly on the spectrum – people like Emily Dickinson, Lewis Carroll and Hans Christian Andersen. Also, in the area of philosophy, there are people like Henry Thoreau, Bertrand Russell
Get involved
We are marking the 10th anniversary of the Autism Act throughout 2019, and campaigning to make sure the Government improves support for autistic children and adults. You can help by taking our survey at www.smartsurvey.co.uk/s/10yearsYAM and telling us about your experiences of autism services and support, so we can show the Government what needs to improve. Please fill in this survey by Sunday 7 April 2019. The survey should take 15-30 minutes to complete. With your support, we can keep campaigning to make sure that autistic children and adults get the support they need, and that their rights are protected and advanced in Parliament, in the courts and in your area. Together, we can create a society that works for autistic people.
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“Your differences make you who you are” Niall Aslam was recently a contestant on Love Island, the most watched television programme of last summer. After leaving the show, Niall revealed his autism diagnosis in an Instagram post that made national news headlines, and was met with a huge public response. He tells Florence Leslie about his autism, and life after Love Island What was it like keeping autism a secret when you were younger?
It was really difficult, especially in secondary school, because I’d go to learning support a lot. I’d have to make up reasons why I was going there. I would tell people it was because I was naughty. School put a magnifying glass on me – if I did anything wrong, they would just jump down my throat. They weren’t very understanding of autism.
Why did you keep your autism a secret?
To be honest, I was embarrassed. It was difficult for me. I didn’t want to be labelled and I didn’t want people to think I’d got anything wrong with me, so it’s been good to see people just take it in their stride.
How does autism affect you? Growing up, it really affected me socially. I didn’t have a very good social understanding when I was younger; I think socialising took me a lot longer than my friends. I learned from other people.
What made you decide to go on Love Island?
Love Island contacted me through Instagram. I didn’t think I was going to get on the programme, but I kept getting through all the audition rounds. I didn’t have a lot of Instagram followers – they just liked the look of me. I was a bit quirky and I was different from everyone else, which can be a strength.
How does it feel to go from keeping autism
Love Island contacted me through Instagram. I was a bit quirky, which can be a strength
a secret to getting such a public response?
My friends didn’t know, so it’s weird to go from that to everyone knowing. If I’m chatting to someone, they already know my story, but people aren’t really intrusive. Online, I have great support and everyone wants to chat. I’ve had a really good reception, but
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Real life
Niall to launch Night Walk We’re delighted that Niall will start our London Spectrum Night Walk on Saturday 6 April. Sign up at www.autism.org.uk/nightwalks
sometimes it can feel overwhelming. It’s just different for me.
Coming off Love Island, you created an Instagram post that made national headlines, embracing the fact that you were different. What have you learned by doing this? I wish I’d been more open about autism, especially now I know I have nothing to be ashamed of. Your differences make you who you are.
What advice would you pass on to other people?
I used to try to impress other people, but the most important thing is not to care what other people think. Just be comfortable in your own skin.
In your Instagram post, you said that it was “time for this rainbow fish to dive deep into the big blue ocean”. What’s next for you?
I’ve been focusing on myself to get into a good headspace, as it has been an overwhelming change. I’ve been influencing and modelling, and I’m starting a YouTube channel, vlogging, doing Q&As and talking about topics such as mental
Read more
Read about Florence’s own autism diagnosis on page 13.
health. I’m also writing a self-help book for people going through different problems.
What area of autism do you feel strongly about?
Knowing your rights at school, and the kind of support students have available to them. I wasn’t aware of the support that I should have had in secondary school. The National Autistic Society’s Education Rights Service [providing impartial and confidential information on school education rights, plus support, to families] would have been really helpful for me, and I’m really pleased to be getting involved with the charity to raise awareness. Spring 2019 23
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Advice
Autism and ADHD Dr Khalid Karim, Consultant Child and Adolescent Psychiatrist at Leicestershire NHS Partnership Trust, and father of two autistic boys, explores autism and attention deficit hyperactivity disorder (ADHD) – and strategies to help. We also meet Harry, who has both conditions
iStock .com / KatarzynaBialasiewicz
“Nothing seems to work” is a claim I often hear from parents of children on the autism spectrum who have ADHD. The combination of both conditions can pose significant challenges for individuals, families and services, but these are often not fully recognised. The latest studies estimate approximately 30% of autistic people have ADHD, although this could be an underestimate, making it one of the most common co-existing conditions. Historically, it was thought that both conditions could not be diagnosed in
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Advice
the same person, but although changes in diagnostic criteria (DSM-5) have led to increased interest, it can still often go unrecognised and underdiagnosed in children and adults.
Impact on life
The main features of ADHD are attention and concentration difficulties, impulsivity and hyperactivity, but the diagnosis also depends on the impact these have on daily living. ADHD is also rarely diagnosed before the age of six, as young children can exhibit these problems as part of their typical development. Although called ‘attention deficit’, it may be better to think of the problem as an attention regulation difficulty. While some individuals struggle to focus in all situations, others can hyperfocus for long periods of time on things that interest them, but are easily distracted otherwise. Boys tend to be more hyperactive, whereas girls can often go unrecognised, as poor attention and concentration can be their main problem. In older teenagers and adults, problems such as poor organisation and procrastination can be a significant problem. Hyperactivity can improve, but adults often describe a feeling of an inner agitation instead.
Being autistic and having ADHD
The situation becomes more complex in individuals with both autism and ADHD. These conditions are inherently linked, and the presence of one can appear to alter the presentation of the other, so neither might be immediately
Harry’s story I have always had an on-off relationship with my autism and ADHD. Before receiving my diagnoses (ADHD at age 13 and autism at age 14), confusion, fear and self-loathing were my norm – I didn’t know to feel anything else. I was convinced, as a child, that I was an alien, that I had emerged from the womb and entered this chaotic and nonsensical world I was expected to be a part of – a world I couldn’t for the life of me figure out how to be a part of. I looked upon my peers with envy, and wondered why they could do so many things that I couldn’t. At school, I was uncontrollable, and would always deflect what my teachers were trying to teach me. This wasn’t at all a resistance to learning per se, as at home I could apply my hyperfocus to various subjects that interested me. Slowly, I learnt to recognise the merits of having ADHD and autism, and realised that my bleak surroundings, to which my
obvious. Individuals may be less rigid in their thinking as they are unable to keep their focus on one specific idea, and may appear more sociable than their peers with autism alone. Unpredictable behaviour and emotional volatility can be a considerable problem, particularly in young children and, again, in early to mid-teens. The combination
peculiar temperament would not lend itself, were obscuring these strengths and moving the downsides of my conditions to the forefront. These days, I have converted my so-called disabilities into useful assets; the hyperfocus and high energy levels are imperative to my writing and speaking. When I live my life in a way that makes sense to me, I understand how being autistic and having ADHD is a gift, and I wouldn’t give it up for the world. ● Hear more from Harry at bit.ly/Harry-Thompson
of poor impulse control, social difficulties and sensory processing problems can sometimes lead to overstimulation, with no ‘stop button’. Different behaviour in different places, such as home or school, just adds to the sense of unpredictability. When unoccupied or unsure how to behave, children can provoke others, often to the detriment of Spring 2019 25
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Advice
Diagnosis and interventions
Typically, following a referral by the GP, the assessment of autism and ADHD in children is undertaken by either paediatric or child mental health services and, in adults, by a psychiatrist. Having a diagnosis can be a relief for some, as parents and individuals often recognise they are different from others with autism alone. Presently, there are no specific interventions designed particularly for children and adults with both autism and ADHD. While strategies to help with behaviour in younger children are favoured, in older children and adults, help with organisational skills is often beneficial. Typically, a strategy may work initially, but the effect is often not sustained. Creativity is key. The combination of behavioural and psychological work tends to be more successful when ADHD is treated with medication. Medication for treating ADHD tends to generate controversy. The response can be a little unpredictable compared with those with ADHD alone, and can often make the features attributed to autism become either less or more obvious. Nonetheless, medication can be very effective at improving different aspects of ADHD, and
The latest studies
estimate approximately
30%
of autistic people
have ADHD
iStock .com / KatarzynaBialasiewicz
other family members, and the reaction of others only seems to encourage things further. Relationships can become strained. Worryingly, in the long-term, emotional and mental health problems such as anxiety and poor self-esteem can develop, and are harder to manage, unless the ADHD is recognised.
make a significant difference to everyday life. It is important to find the right medication. Unfortunately, a stigma still exists around ADHD, with parents and individuals feeling unfairly judged, leading to under-reporting and a later diagnosis. The problems experienced can be considerable,
but recognising ADHD is important, as is getting help. The understanding of the complexities around this combination of conditions is evolving all the time, and there needs to be a continued conversation about this important diagnosis – and the different ways of thinking about it.
Find out more about ADHD and autism, and where to go for advice at www.autism.org.uk/ADHD
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How to...
Help your child sleep Ever find it a challenge to get your child to go to sleep – and stay asleep? You’re not alone. Parents of autistic children often find bedtime stressful. Alyson O’Brien of Sleep Scotland, a charity dedicated to supporting children and young people with sleeping problems, shares her tips 28 Your Autism
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How to...
1
5
Make sure your child gets at least 30 minutes of exercise – and time outside – as early as possible during the day
Ensure that your child’s room is quiet, dark and not too warm
2
iStock .com / Wavebreak
They need this to regulate their body clock, as well as make sure they are tired when it comes to bedtime. It can be more challenging getting time outside during the winter months, so walking to school or planning indoor activities such as swimming or dancing can help.
Try not to eat too close to bedtime
Regular meal times help regulate our body clock, and having supper an hour before bed can help reassure you when your child tries to avoid sleep with, “I’m hungry”. Avoid drinks of cola, hot chocolate, tea and coffee. Instead, offer a warm milky drink, as milk contains an amino acid that helps promote sleep.
3
Avoid stimulating activities in the hour before bedtime, including TV, tablets and consoles
Our bodies create cortisol, also known as the stress hormone, when we are stimulated. Lots of activities can create cortisol in the body, such as playing with friends, running around, or watching TV, and children on the autism spectrum naturally have higher levels of cortisol in their bodies. If we have too much cortisol in our bodies before bed, it will stop us falling asleep. Instead, quiet play with your child, such as colouring, building blocks or jigsaw puzzles, helps bring cortisol levels down to prepare for sleep.
4
Keep a regular bedtime and wake your child at a similar hour each morning
Yes, even at the weekend! This helps strengthen their body clock, so their brain knows to release cortisol in the morning to wake up, and the sleep-promoting hormone, melatonin, at bedtime. Melatonin helps to kick-start sleep, but doesn’t maintain it, so it is important to keep to a regular bedtime routine. Use visual timetables to make it easier to follow.
Creating a calm and dark space helps promote sleep. Keep the room clear of distractions and electronic equipment, such as TV. If your child is interacting with anything that produces light before bed, this could keep them awake. While tablets may seem to calm children down, the light emitted by screens is likely to prevent their bodies creating melatonin, and the interaction can increase cortisol levels. Room temperature is important, too. A very warm bedroom can interrupt sleep, and your child may be more likely to wake during the night.
6
Help your child to learn to fall asleep alone in their bed, without your presence
This can be particularly challenging for parents of autistic children, and often leads to cosleeping (children sleeping in their parents’ bed). Be a ‘boring parent’ at lights out, and throughout the night. By keeping your voice low and not engaging in conversations, you will show your child that staying awake at night is not interesting, so they would be better going to sleep. If your child has difficulty understanding the need for sleep, a social story or book about why we need to sleep may help. This can also be used to reassure your child that they are safe when sleeping alone.
Read more at www.sleepscotland.org and on our website at www.autism.org.uk/sleep
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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
Q A
I’m home schooling my autistic son. Can I claim any funding for resources such as an iPad, and if so, where from? Anonymous
As a home-schooling parent, I also feel that iPads are an incredibly important resource to have For expert advice for your child, especially if they struggle and information on www.home-ed.info/heresources with processing and writing. We were any autism-related and www.home-education.org.uk/ able to have one as part of an online issues, call our resources-educational. And there is learning programme provision in Dorset, Autism Helpline on also the trusty BBC Bitesize website, with which has now been closed. Do you have 0808 800 4104 resources from KS1 to GCSE. I also use an EHC plan for your child? It may mean Pinterest for craft ideas, sensory strategies that they are eligible for funding under and support materials. Personal Independence Payments. Groups like Local homeschooling groups may also have shared www.educationotherwise.org have helpful advice, resources, or funding for specific activities. Myself and and you might be eligible for a grant from a charity another mum have set up a group for ASD and socially such as Family Fund (www.familyfund.org.uk) for this anxious teens. We run a weekly drop-in, as well as or any other resources, if you meet their criteria. subsidised activities such as Rockburn – indoor climbing Other resources that we find helpful are the that’s non-competitive, but hugely rewarding. Karen toy library – www.toylibrary.co.uk – which has equipment, sensory toys and even musical instruments to hire out for a small fee. Local scrapstores have free Karen wins a copy of The Parents’ Practical Guide to or inexpensive materials that you can use for various Resilience for Children aged 2-10 on the Autism Spectrum by art projects. Many libraries now run free code clubs, Jeanette Purkis and Emma Goodall. Lego clubs, and knitting and reading sessions, to name but a few. ● Find more information on our website Online, there are lots of free printables and about home schooling at www.autism. curriculum resources. A good place to start is org.uk/homeeducation
Help me next!
Can you learn social skills? People use self-help books, but is this like acting? Can you learn how to socialise better, so it becomes an innate behaviour? Anonymous, via our online community 30 Your Autism
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iStock .com / Imgorthand
Do you have a problem our readers can solve? Get in touch and benefit from the experience of our other members
Send us your solutions for a chance to win a copy of Fall Down 7 Times Get Up 8 by Naoki Higashida.
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…
Avoid trouble online
Karen’s* 22-year-old son is autistic and has a learning disability. Recently, the family experienced a distressing situation when he was reported to the police for saying inappropriate things online. Here, Karen shares her story to make others aware of the dangers, and gives her tips for staying safe online I’m writing this story because I don’t want another autistic person, or their parents or carers, to ever have to live through the horror that we did for six months. The year had been challenging, more so than most. My son worried about an uncertain future filled with few friends and little purpose. He retreated, becoming lost in the online world of gaming, chatting to new people he considered friends about their shared interests. It was a sunny, early spring teatime when his mood lifted. I seized it and we sat making positive plans for him to find a place in the world – jobs, where to find friends, things to do. Ironically, it became the point when everything changed. Two police officers from the Protecting Vulnerable People Unit called. My son’s devices were seized, and the start of a horrific six months unfolded.
He had made jokes and told stories to his online ‘friends’. One of these friends turned out to be under 16. His dad saw, and misinterpreted childish humour for words from a sexual predator. I also have younger children, so we were swiftly under the radar of social services. I feared for my job
(I work with people with disabilities) and, shockingly, I found there was a gaping hole where support should have been. The situation was beyond description – shock, shame and crushing fear rolled into one.
No control
I was terrified and afraid to face the future, but powerless to control events that were uncontrollable. These were just my fears. My son could not articulate the terror he lived with, thinking the most unthinkable outcome. These situations are becoming increasingly familiar – but not talked about. My son hadn’t committed a crime. After six months, it was found that he hadn’t done anything illegal online, but had shown himself to be very vulnerable in his quest
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How to…
Karen’s tips for staying safe online
It was found that he hadn’t done anything illegal online, but had shown himself to be very vulnerable in his quest for friends for friends. The only evidence found was of a young man making clumsy mistakes, lacking knowledge of subtleties of what is acceptable and what is not, and, instead, creating his own black and white from the grey areas that fall For more advice for criminal justice professionals, visit www.autism.org. uk/cjp
between. This legal line is one over which some have crossed, but not through sinister intent. In the online world, face-toface awkwardness is removed. It is easier to ask a question that daren’t be asked in real life; to make a friend on the same social level who can’t be found in real life. My worry was that my son was vulnerable to predators, not that he’d be viewed as one. Autistic people being seen as ‘criminals’ is a frightening prospect. Only last week I took my son to adult autism services and was told that they are seeing an average of two people every fortnight who have done similar things. The feeling is that some police officers are more understanding than others and, sadly, some young people are having to go through the whole of the court system for what is essentially an attempt to make friends.
● Keep all equipment that connects to the internet in a central space, not in bedrooms, with the screen facing outwards. Monitor your son or daughter’s PC/tablet/ phone use, and how much time they spend online. ● Know the rules. Find out what is ok to say online, and what is not ok; what is legal and what is not. The posts you make and the updates you write are there forever, and can be shared with other people. Don’t put anything online that you wouldn’t want your close family or future boss to see. ● Use visual stories to teach the person you care for about appropriate online behaviour. ● Don’t share any private information online via email or web chat. ● Our online community at www. autism.org.uk/community is a great place to talk to likeminded people in a safe and stress-free way. ● Read more advice at www.autism.org.uk/ staying-safe-online
That’s why, as well as autistic people and their families understanding how they can keep safe, it’s essential that everyone across the criminal justice system understands the condition much, much better. *Names have been changed to protect identity
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Advice
Getting support at home Our Autism Helpline Adviser, Claudine, gives a step-by-step guide to getting help from social services
If you or your child needs support with dressing, washing, preparing meals, finances or transport, social services may be able to help. Social services provide practical help either through their own services or by referring you to other services. To get this support, you need to ask for an assessment to be carried out by your local social services department. Social services uses this assessment to decide what support you are eligible to receive. Social services may be able to provide:
● an outreach worker to help you use transport, attend appointments, go to community groups and pursue hobbies ● counselling – social services can refer you to the relevant therapeutic service for emotional, behavioural or sensory challenges ● home adaptations – if your home needs to be adapted to meet the needs of yourself or your child, your local council provides a home assessment service where it can recommend
equipment and adaptations ● home-based assistance – support with cleaning, laundry and cooking ● home-based and centre-based respite care – a short break service where a carer comes in to support your autistic child or you, either at home or at a respite centre, while you or your parent/carer can take a break ● support and activity groups – information about Special Educational Needs and disability groups in your local area
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Advice
● family support and training services – details about local parental guidance and training programmes.
Getting a children’s needs assessment
Your rights to an assessment Your local council must provide any necessary support services to meet the needs of children with a disability, in line with an assessment of those needs. And your child will have the right to an assessment from children’s services or children and families’ services. The legislation to uphold this practice in England is under Section 17 of the Children Act 1989; in Scotland it’s under Section 23 of the Children Act 1995; in Wales, the Social Services and Wellbeing Act 2014; and, in Northern Ireland, Article 18 of the Children Order 1995. How to request an assessment You need to write to your local council to ask for an assessment
for your child. To find out the address for the relevant team, contact the call centre at your council. Tell it that you want a needs assessment for your child under the relevant legislative act for your part of the UK (see left). Ask for the name of the team manager you should send your letter to. If you can’t get these details, send the letter to the director of the department.
Did you know? ● While assessments are usually carried out by a home visit, social services may ask you to complete the assessment over the phone or online. You don’t have to agree to this and you can ask that the assessment is carried out face to face. ● For child and adult assessments, in accordance with the Care Act 2014, the social worker carrying out your assessment must either have a good understanding of autism themselves, or consult someone who does.
Not sure what to write? Use our example letter to request a child’s needs assessment at www.autism.org.uk/letters Social services must provide a needs assessment within 45 days of receiving your letter. What to expect during the assessment Once your request for an assessment has been received by social services, it will be allocated to a social worker who will carry out your assessment. When the social worker contacts you to make the appointment, ask to see the criteria they will refer to in making the assessment. The criteria will vary depending on whether you live in England, Scotland, Wales or Northern Ireland, and your local council. To prepare for the assessment, list any support needs that your child has and try to show evidence that you need help in meeting these needs. For instance, a child may need additional support in developing life skills such as washing, dressing and eating. A parent can outline how long it takes them to assist their child and the impact this has on other family members.
Getting an adult community care assessment
Your rights to an assessment In accordance with Section 9 of the Care Act 2014, your local social work department must carry out a community care assessment for you if you appear to need care and support, even if they do not think that you will meet the eligibility criteria to receive support services. Spring 2019 37
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Advice
How to request an assessment For a Community Care Assessment from your local council, check its website to see how to apply. You can find details at www.gov. uk/apply-needs-assessmentsocial-services by entering your postcode. Alternatively, you can contact your local authority’s call centre and ask for the postal address of the relevant social services department. Always ask for the name of the team manager. If these details are not provided, you can address the letter to the director of the department. Use the template letter on our website at www.autism.org. uk/letters While there is no timescale for adults, if you haven’t heard anything after six weeks, you may want to chase up your request. If social services cannot determine if you have an apparent need from the information given in your letter, they must carry out a pre-screening eligibility assessment before a community care assessment can be denied. This eligibility assessment is usually carried out over the phone, but may be face to face. What to expect during the assessment The social worker who carries out your assessment will refer to the national eligibility criteria to assess if you are entitled to support. You can see this criteria at www.scie.org.uk/care-act-2014/ assessment-and-eligibility/ eligibility/outcomes-caresupport-needs. To prepare for your assessment, make a list of the needs you have and the support you feel you
A social worker will carry out your assessment
need. For instance, you may be too anxious to go out by yourself. In this case, an outreach worker could support you and this would prevent you becoming isolated. You can have a family member, friend or advocate at your assessment. If you would find it really difficult to take part in the assessment or communicate your needs, social services must offer an advocate for you.
What to expect afterwards
If you or your child is eligible for support, social services will write a care plan outlining how your needs will be met. You should review it with a social worker from social services at least once a year to ensure you or your child is receiving the correct level of support. A financial assessment will be carried out to decide how much you will pay towards the support services you or your child receives. The finance department at social services will calculate your
contribution after you have filled in the relevant finance form.
What if the assessment process doesn’t work?
We sometimes hear from people who have been denied an assessment, and those who are unhappy with the outcome and feel it has left them without the support they need. If this happens, you can make a complaint to your local authority; see its website for details of how to do this. You can also refer to the Citizens Advice website of your country and carry out a search for ‘complaining about social services’. If you need legal assistance in getting an assessment or challenging the outcome, the Disability Law Service can help at https://dls.org.uk
Read more advice at www.autism.org. uk/care
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Meet the team
“So many businesses are doing more for autistic people” We caught up with Daniel Cadey, manager of our Autism Friendly Award – and stand-up comedian What inspired you to work on the Autism Friendly Award? It was the prospect of developing something from scratch that could help a lot of people. When I found out about the role, I started to look into accessibility and inclusivity. It was clear that autism was being overlooked. Do you have a connection to autism? I’ve discovered that I have several family members on the autism spectrum. What’s your favourite part of the job? By working with organisations, we are opening up conversations within their businesses about autism. By the end of 2019, more than 1,000 individual sites will have the Award. It’s always nice to remember this when you are stuck in the office! Seeing the impact of the Awards firsthand is one of my favourite things about working here. I recommend volunteering
Buckingham Palace receives our Autism Friendly Award
at Autism Friendly Performances – the atmosphere is amazing.
What’s on your work wish list? It would be wonderful to have a team of 50 people, or to be able to do more than two things at once, or if money was no object. Knowing that so many businesses are doing more for autistic people is a consolation. What are your other interests? I do a bit of stand up, and run comedy nights in London. This means visiting various pub basements around the country, and squirreling away whatever holiday I can to drag myself through fringe festivals. Several of my colleagues have seen my act, and I can happily report that some of them still work here – and, on occasion, speak to me. Read more about our Autism Friendly Award at www.autism.org.uk/AFA
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Notebook
Everything you need to read, do or see
Become a reviewer
Would you like to join our reviewer list for books and products? Email us at YourAutismMag@nas.org.uk
All the Time We Thought We Had AUTHOR: Gordon Darroch PUBLISHER: Polygon PRICE: £9.99 VERDICT: Intensely moving and honest
Journalist Gordon Darroch has written a heartbreaking account of his family’s experience of coping with cancer, autism and bereavement. When Gordon’s wife, Magteld, is first diagnosed with breast cancer, she says: “I’ve got two kids, they’re autistic. I need to be there for them.” They decide honesty is the best policy, and to tell sons Adam and Euan about Magteld’s illness. Gordon captures Adam and Euan’s reactions. When Magteld’s hair falls out, Adam thinks she’s a different mum and is reluctant to go to school. Euan tries on her headscarves and they laugh together. What comes across is how much empathy the boys display towards their sick mother. The book also chronicles the family’s move from Glasgow to Holland, plus memories of how Gordon and Magteld met, and Adam and Euan’s autism. Magteld is described as a fighter, advocating for her sons’ education, and even securing a school place for Adam in her final weeks. A thought-provoking memoir, addressing love, grief and loss. Suzanne Westbury, Editor of Your Autism magazine
Author: Gordon Darroch
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Giveaways
We have a copy of How to Best Help an Autism Mum by Sharon King to give away. To stand a chance of winning, send your name by email to YourAutismMag@nas.org.uk by 30 April, quoting ‘Sharon King’. The winner will be announced in the next issue. The winners of last issue’s competition to win a copy of A Journey with Brendan by Dr May Ng are: Chitra Rajprabhu, Emily Sitch, Heather Harwood, Sarah Sweeting, Liz Addy, Sarah Connelly, Michelle Morris, D Hawker, Julie McGoldrick, Anna Kociemba, Beryl Cunningham, Gilly Robinson, Jo-Anna Dem, Kenn Wild, June Smith, Margaret Hamilton, Arlz, Sarah Hague, Kerry Coleman and Maria Mufti. Well done to you all!
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Notebook
Our six favourite…
books for autistic teenagers
1
M is for Autism
Written by the teenage girls at Limpsfield Grange, this follows an autistic character called ‘M’. Available from Amazon, £8.35.
2
On the Edge of Gone by Corinne Duyvis
4
Martian in the Playground by Clare Sainsbury
This offers coping strategies for young people and parents, and looks at autism in schools. Available from Amazon, £19.99.
A sci-fi young adult fiction novel about a comet hitting earth. Available from Amazon, £10.99.
Spectrum Women
EDITED BY: Barb Cook and Dr Michelle Garnett PUBLISHER: Jessica Kingsley Publishers PRICE: £15.99 VERDICT: Helpful, encouraging and approachable In Spectrum Women, contributors describe life from a female autistic perspective, covering topics such as mental health, communication, employment, parenting and pursuing diagnosis. The strength of this anthology is in the contributors. Through recounting anecdotes, they can make people who feel isolated connected to a global community. These personal accounts are supplemented by clinicians’ perspectives, which are validating, encouraging and explain terminology. I would recommend this book to women who may be questioning whether they are autistic, or are considering a formal diagnosis and are wondering what life holds on the other side. It offers very useful and easy-to-understand information. I would also recommend it to professionals looking to learn more about women on the autism spectrum. Florence Leslie, External Affairs Assistant – Storyteller at the National Autistic Society
5
The State of Grace by Rachael Lucas
3
Sex, Drugs and Asperger’s Syndrome by Luke Jackson
An informative guide aimed at teenagers tackling topics from an autistic ‘insider’ perspective. Available from Foyles, £9.99.
A young adult fiction novel about family, friends and first love. Available from Waterstones, £6.99.
6
Know your Spectrum! by Finn Monahan
This book encourages teenagers to draw conclusions about what autism means for them. Available from WHSmith, £18.99.
Do you have an idea for our six favourites section? Email it to YourAutismMag@nas.org.uk
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Snapshot
I’m a… parkrunner
Ellie Pinnington takes part in her local parkrun every weekend. Florence Leslie caught up with Ellie and her mum to find out more Always dressed in pink, 17-year-old Ellie from Southport cannot wait to run her local parkrun route at the weekends. Parkrun is a free, weekly running group that welcomes everyone. At first, Ellie began running with her mum, dad and big sister Emma. But, like most teenagers, Ellie wanted her independence, and now runs by herself. Diagnosed at two years old, Ellie needs support with day-to-day activities, and it was hugely terrifying for Ellie’s parents to let her run alone. But the parkrun route is always the same, and “once she understands predictability and routine, Ellie flies.” It’s a massive achievement. Ellie’s parents chose the Southport group because the park is a pleasant sensory experience on a Saturday morning, especially when the sun is low. Running has been so beneficial for Ellie because it structures her weekend and soothes her sensory system. Ellie’s mother, Mel, a clinical educator in critical care, describes Ellie as having “minor celebrity status” among the parkrun volunteers. The judgement-free environment has encouraged Ellie’s self-esteem.
Part of the community Many autistic people and their families can experience social isolation, but one of the benefits of parkrun is bringing the community together. In June 2018, Ellie took part in a charity event with Mel’s nursing colleagues. Not only did this allow Ellie to join in with
a group of people she hadn’t met before, it also gave Mel’s colleagues a greater understanding of what life can be like for an autistic person. Mel describes Ellie as having an affinity for music, and she recently completed her Grade 4 Musical Theatre exams. Ellie listens to music with a strong beat on her headphones when she runs to reduce external stimulus. If Ellie’s achievements have convinced you to start running, but you are unsure as to how to get started, Mel suggests familiarising yourself or your family member with the route through walking. At first, Ellie was uncomfortable with being asked to do something she was unfamiliar with. Now, she is the first person awake on a parkrun day. Mel’s biggest piece of advice is to offer “constant support and, as a parent, have faith in yourself”.
Why not try one of our charity’s walking or running events and help transform the lives of autistic people and their families? Visit www.autism.org.uk/ fundraise
46 Your Autism
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