Your Autism Magazine - Autumn 2018 by The National Autistic Society

Autism YO U R

www.autism.org.uk

MAGA ZINE VOL 52 – NO 3 • AUTUMN 2018

BACK TO SCHOOL

MASKING MOVING TO SUPPORTED LIVING I’M A… COUNTDOWN FINALIST

Our expert advice

JOB INTERVIEWS

Asking for adjustments

PAUL, MICHAEL, LEVI AND LUCAS Tips for days out together

Hollyoaks’ Talia Grant Acting, autism awareness and making her TV debut

Autumn 2018 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk

WRITERS Hermione Cameron and Madeleine Inskeep THE NATIONAL AUTISTIC SOCIETY HEAD OFFICE The National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@ jamespembrokemedia.co.uk SUBSCRIPTIONS Only available to members of The National Autistic Society To join, visit www.autism.org.uk/magazine CONTACT Supporter Care Team The National Autistic Society 393 City Road London EC1V 1NG Tel: 0808 800 1050 membership@nas.org.uk DESIGN James Pembroke Media www.jamespembroke media.co.uk PRINT CPUK print publishing www.cp-uk.co.uk 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 Autumn Vol 52, No 3 The National Autistic Society ISSN 2055-0413 The views expressed in Your Autism Magazine and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing the widest possible range of information to readers, we may include details of some of the many approaches to autism now available. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a featured website does not necessarily imply that our charity endorses or supports the groups or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.

his issue definitely has a theme of new beginnings. We’re approaching back to school time in September and on page 36, our Helpline team advise on preparing your child for the new school year and tackling school refusal. We also feature Sharon and her son Mattie, 25, who has recently moved out of the family home into his own flat. Sharon offers some invaluable tips on making this none-too-easy transition on page 32. Welcome to all our new members, including our ambassador Chris Packham. We’re delighted to have you on board and do email me at YourAutismMag@nas.org.uk if there are particular topics you would like to see covered in this magazine. We’re excited to announce we are making some changes to the look of Your Autism Magazine and we’d like to hear your feedback! Keep an eye out for an email this month asking you to share your thoughts. Suzanne Westbury EDITOR

Visit our Facebook page www.facebook.com/ NationalAutisticSociety

Contents 04 News 11 Research in focus 13 School exclusions 15 Readers to the rescue 16 How do I… cope with job interviews 18 Interview: Talia Grant 22 Feature: Masking in men and women 24 Feature: Autism Hour 28 Our story: Paul, Michael, Levi and Lucas 32 Advice: moving from home to supported living 36 Advice: Going back to school and school refusal 41 Meet our team: Sharon McDaid, Transition Adviser 43 Reviews 46 I’m a… Countdown finalist

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News

A round-up of the stories that affect you

THEY’VE GOT TALENT

Work with the British Film Institute to increase autism understanding On 29 April, Tamsin Parker, a young autistic woman and National Autistic Society volunteer, was forcibly removed from a film screening for laughing. Tamsin was celebrating her 25th birthday by watching one of her favourite films, The good, the bad and the ugly, at the BFI in London. An audience member complained to staff that Tamsin was laughing in inappropriate places and she was carried out by security, while explaining that she has Asperger syndrome. The incident has highlighted the need for venues like this, and their staff, to have a much better understanding of autism.

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The BFI has issued an apology to Tamsin, including: “We can and must do better in accommodating all the needs of our customers and we will be addressing what additional provisions and staff training we can put in place to deal with all situations with sensitivity.” Daniel Cadey, our Autism Access Development Manager, said, “We are now working with the BFI to help them to improve their practice. They will be working towards our Autism Friendly Award, which includes staff training about autism.” Read Tamsin’s article about representations of autism in TV and film on Your Autism Extra at www.autism.org.uk/digitalyam.

CONGRATULATIONS TO CALUM Courtney and Robert White for winning places in the Britain’s got talent final. It’s the first time two autistic performers have reached the finals. Ten-year-old Calum is no stranger to singing. Last year, he performed on the same stage as Emeli Sandé at a ball in aid of our charity. He also racked up over two million views when a video of him singing Who’s lovin’ you by Smokey Robinson went viral. According to his mum, Tupney, Calum doesn’t get nervous. She said in the Independent, “if there’s anything from one to 100 people to sing in front of, he loves it.” Meanwhile, BGT runner-up, comedian Robert White, has announced a 31-date tour next spring. His BGT performances have achieved an incredible seven million views on YouTube, and he gained 17 per cent of the vote in the BGT final.

BGT runner-up, Robert White, is going on tour next year

AUTUMN 2018 • NEWS

Inspirational volunteer Mandy Garford

MEETING OUR VOLUNTEERS During National Volunteers’ Week in June, we celebrated the amazing people who give up their time to support our charity. We couldn’t do what we do without the support of more than 2,000 brilliant individuals who volunteer for us. From driving school buses to listening to concerned parents on our helpline, these heroes are helping to make the world more autism-friendly for the 700,000 adults and children on the spectrum and their families. Throughout the week, we showcased eight of these brilliant people. The group included Mandy Garford who recently won our ‘most inspirational volunteer’ award for her tireless work as Chair of our Dartford and Gravesham Branch.

There she organises a cafe, after-school clubs and support meetings for adults. And, she fits all of this in around looking after her three autistic children. We also spoke to Mike who is autistic and has, over the years, used a lot of National Autistic Society services. He feels he wants to give back. Mike runs an amazing music session at his local service. They have staged a pantomime, sung carols and are preparing for their most ambitious musical performance yet. Interested in volunteering to help autistic people? Apply now at www.autism.org.uk/ volunteer.

VOTE ON A NEW NAME FOR ASPERGER UNITED In light of the revelations about Hans Asperger, we are re-naming our Asperger United magazine. We asked for your suggestions for a new name in July’s issue and you can now vote for your favourite at www. autism.org.uk/AUonline by 15 August. END OF ‘UNNECESSARY’ PIP REVIEWS In June, the Government announced that some people with the highest support needs who receive Personal Independence Payment (PIP) − and whose needs are unlikely to change substantially – will no longer have to attend regular reviews to maintain this benefit. They will publish guidance on how this will work later this summer. Read more at www. autism.org.uk/ pip-reviews TELL THE CQC ABOUT YOUR CARE Have you had a good or bad experience of a social care or health service in England, like a GP surgery or hospital or support from your local council? If you think the regulator needs to know what happened to you, go to www.cqc.org.uk/ share-your-experience.

The new edition of our best-selling book Sensory and motor strategies is available now from www.autism.org.uk/shop. Author Corinna Laurie, our charity’s Clinical Lead Occupational Therapist, has expanded the book to include strategies to help autistic students develop their motor skills to support handwriting, dressing and using a knife and fork. As a member, you receive a 10% discount on this book and all our publications in our online shop.

YOUR AUTISM MAGAZINE

NEWS • AUTUMN 2018

Many autistic people develop mental health issues

Diagnosis data collection starts as new evidence of waits uncovered

New resources for families with relatives in mental health hospitals Autism is not a mental health condition, but many autistic people develop separate mental health problems. Often this can stem from a lack of appropriate support, which means that autistic people can develop more significant needs. We campaign to change this. But, in the worst cases, some autistic people end up in mental health hospitals. This can be a really distressing and often damaging experience for autistic people and their families. So, our charity has worked with a number of families in this situation to create new information on our website. If you need advice, please visit www.autism.org.uk/about/ health/mental-health-care.

New figures have revealed the extent of the autism diagnosis postcode lottery. Working with our charity, Norman Lamb MP obtained important data from many health authorities in England. It shows that children and adults face shocking waits of more than two years for an autism assessment and over three years for a diagnosis in some areas. This new evidence is part of our Autism diagnosis crisis campaign. Together with thousands of supporters, we have been calling on the Government to urgently tackle the crisis. Because of this campaign, since April, health trusts in England have been required to collect data on how long people wait for a diagnosis. This has never been collected before and is vital to reducing waiting times. It will take a while to build up but the Government hopes

the first publication will happen in spring 2019. But this data needs to be used to hold local areas to account for bringing down the diagnosis waiting times that we have uncovered. We will continue to call on the Government and NHS England to do this. With your support, we can tackle the Autism diagnosis crisis.

Waiting too long for a diagnosis

THANK YOU! Thank you to Paddy and Christine McGuinness for hosting the Twinkle Ball. The event raised an amazing £100,000 to help autistic people and their families. We are also delighted to welcome Paddy and Christine as new ambassadors for our charity.

Christmas card competition winners announced! As always, our President Jane Asher had an amazing range of entries to choose from, but in the end, the winning designs came from Jemma (adult competition winner, who designed ‘Santa’s Reindeers’) and Toby, our children’s competition winner and creator of ‘Frosty’! Christmas cards will be available at www.autism.org.uk/shop from Monday 13 August.

‘Frosty’ designed by Toby AUTUMN 2018

NEWS • AUTUMN 2018

We’re celebrating the fifth year of All Aboard!

Join us at All Aboard in September Will you be a Really Useful Engine? On Saturday 29 September join our Thomas & Friends themed sponsored walk and earn free tickets to Drayton Manor Theme Park! Perfect for families, All Aboard for Autism is a 3km sponsored walk around the perimeter of Drayton Manor Theme Park, home of Thomas Land. On the day, you can expect to be greeted by the Fat Controller and enjoy a range of sensory toys and a sensory bus! You can also gain free entry to Drayton Manor Theme Park and Thomas Land on another day if you raise above £35 per child and £45 per adult. Commenting on All Aboard 2017, Julie Cooper, pictured, from the Puffing Percies

DIARY DATES We’ve got a busy few months coming up, so add these events to your calendars!

Registration and full details about the day can be found at www. autism.org.uk/allaboard or you can email events@nas.org.uk.

SEP

Autism and mental health conference, Leeds learn.autism. org.uk/mental-health-2018

Kiltwalk, Edinburgh www.autism.org.uk/kiltwalk

Free Autism and technology conference, London learn.autism. org.uk/technology-2018

SEP

OCT

6-13

All Aboard for Autism www.autism.org.uk/allaboard

team, said, “The day was great; everyone was so friendly. Rachael from the National Autistic Society remembered corresponding with us at the beginning, even remembering our team name and that she had sent out a little Percy zip pull to my daughter... so thoughtful. “An amazing autism-friendly day, so great to be surrounded by people and other families who truly understand. Quite a challenge for little legs, but a fantastic sense of achievement for my daughter to finish and receive a medal. We’ll be back next year!”

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Autism Hour www.autism.org.uk/ autismhour

Royal Parks Half Marathon www.autism.org.uk/royalparks

Autism in women and girls conference, London. learn.autism. org.uk/women-girls-2018

Research in focus

Bringing you news of the latest research into life and work on the autism spectrum

Interventions for depression The International Society for Autism Research (INSAR) conference held in May heard about progress in researching the impact of cognitive behavioural therapy (CBT) as a treatment for depression in autistic adults. Clinical guidelines recommend ‘low intensity’ psychological treatment based on CBT as an effective treatment for mild to moderate depression. If adapted, CBT has been found to be effective in treating anxiety problems in children and adults on the autism spectrum. There has been less research into the usefulness of CBT as a treatment for co-occurring depression in autism; with several studies of group CBT showing mixed findings and no randomised controlled trials of individual, low-intensity CBT. Researchers from Newcastle, Bristol and Bath Universities are currently carrying out a feasibility study to decide if it is possible to conduct a large-scale randomised controlled trial that would determine the clinical and

cost-effectiveness of using CBT to treat depression in autistic adults. Seventy people are taking part in this initial study, with half using Guided Self-Help (GSH): a low intensity psychological intervention based on CBT adapted for autistic people, and the other half continuing their usual treatment. Interviews with people taking part in the feasibility study have been positive. All welcomed an autism-focused intervention for depression due to the current lack of provision in mainstream services. Therapists felt GSH was appropriate to meet the needs of the majority of trial participants. Participants who received the guided self-help appreciated the therapists having a good understanding of autism and were positive towards the aim and structure of the GSH intervention. The findings support the researchers’ proposal to carry out a larger scale randomised controlled trial of CBT to treat depression in autistic adults. ● Read more about the autism depression trial (ADEPT) at bit. ly/CBT-depression and bit.ly/CBTdepressioninterviews.

World’s largest autism grant awarded The largest medical research grant ever given for neurodevelopmental conditions has been awarded by the Innovative Medicines Initiative to an international consortium led by the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. The €115 million grant, Autism Innovative Medicine Studies2-Trials (AIMS-2-Trials), will be used to help develop new medical therapies to improve health outcomes for autistic people. Autism research charity Autistica will be involved to ensure the research focuses on the autism community’s priorities and involves autistic people and families. Autistica said, “Many autistic people tell us that effective therapies for common difficulties would help them live a better life. This project aims to offer personalised approaches for autistic people.” Read more at http://network. autism.org.uk/content/ autism-research-grantstudy-health-outcomes.

YOUR AUTISM MAGAZINE

NEWS FOCUS • SCHOOL EXCLUSIONS

Why we need to close the exclusions loophole An important legal case was heard in July, in which a family is appealing against a primary school’s decision to exclude their autistic son. Catriona Moore, our Education Policy Officer, explains why we have intervened in the case in support of the family.

family whose son has been excluded from school for challenging behaviour went to the Upper Tribunal in July. They are arguing that the school has discriminated against their son because of a loophole in current equality legislation, and that this is a breach of his human right to an education. Schools have a duty under the Equality Act 2010 to avoid discriminating against children with disabilities, including autism. They have a duty to make ‘reasonable adjustments’ – things like providing a quiet place where an autistic pupil can go when they feel overwhelmed. This enables autistic children to learn, and reduces the risk of situations that might lead to them being excluded. However, the Equality Act also includes an ‘exemption’ in Regulation 4(1) that means children may lose their protection from discrimination. This regulation says that, if a person behaves in a way that indicates they have a ‘tendency to physical abuse of others’, it is considered to be separate to any disability they may have. We want the Upper Tribunal to

recognise that behaviour can be a form of communication, or a sign of unmet need. It is often impossible to separate an autistic child’s behaviour from their autism. We know from our School Exclusions Service, that when an autistic child feels extremely anxious or stressed, their choices can feel limited to a ‘fight or flight’ response: either trying to run away from the source of the anxiety or to lash out at people who are in their way. The way the law is being applied discriminates against children on the autism spectrum. The law doesn’t encourage schools to make every possible reasonable adjustment before resorting to exclusion. Too many children are missing out on their education and we want to remove this legal loophole. When the Upper Tribunal gives its ruling on the case, we will provide updates on our website. In the meantime, we will continue to campaign for a national autism and education strategy, so that schools understand autism and councils work with schools to make sure that support is available to all children on the autism spectrum. ●

“The law doesn’t encourage schools to make every possible reasonable adjustment before resorting to exclusion.”

Find out more

• If you’re looking for help getting

the right education for your child, we have lots of information at www.autism.org.uk/education. • We also run an Education Rights Service, which offers impartial and confidential support to families on school education rights and entitlements. Read more at www. autism.org.uk/educationrights.

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Readers to the rescue!

DO YOU HAVE A PROBLEM OUR READERS CAN SOLVE? GET IN TOUCH AND BENEFIT FROM THE EXPERIENCE OF OTHER PEOPLE FROM THE AUTISM COMMUNITY.

For expert advice and information

employee who wasn’t so tired, and therefore more efficient, and there would be a (small) financial benefit to them. The hardest thing was finding the courage to talk to my line manager about my request in the first place, but I was so glad I did. Once I had done that, it gave me a bit more confidence with the rest of the process. – Anonymous

on any autismrelated issues, call our Autism Helpline on

0808 800 4104

Can anyone advise me how to request flexible working? I am applying to go from full time to three days a week. Should I fill in a flexible working form or make a reasonable adjustments request? Not sure where I stand, as my employer says autism doesn’t fall under the Equality Act. – Anon THE EQUALITY ACT 2010 describes a disabled person as someone who has “a physical or mental impairment which has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities”. To be diagnosed as autistic, it will have been concluded that you have difficulties that “limit and impair everyday functioning” “since early childhood”, or in other words “having a long-term adverse effect on your ability to carry out day-today activities” − and so it is clear to us that if you have

been diagnosed as autistic, you are certainly protected under the Equality Act 2010. – Catherine Leggett Employment Consultant, the National Autistic Society I HAVE ASPERGER syndrome and when I was working and wanted to reduce my hours from full time to four days a week, the first thing I did was approach my line manager for a very informal discussion, before completing any forms. Fortunately, she was sympathetic and discussed my request with the personnel department on my behalf. I then completed a “Post Adjustment” form, emphasising the benefits to the organisation in that they would have a happier

THE EMPLOYER IS misleading you either on purpose or they seriously need to familiarise themselves not only with the Equality Act but the law around the legal responsibilities of employers towards their staff. Autism, like all disabilities, is covered and your employer is legally obliged to make reasonable adjustments, which can include flexible work hours. If you are part of a trade union, seek a representative to attend meetings between you and your employer, to come to an amicable agreement that suits both parties. Or contact your local Citizen’s Advice Bureau for legal advice on what to do next. – Emma

Help me next!

Our three-yearold 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 nonverbal kids. How can we tell him what he should not do? How can we persuade him not to regard anything as a potential toy? How can we even get him to sleep at a reasonable hour? – Jim SEND US YOUR SOLUTIONS for this issue’s problem for a chance to win a copy of Fifteen things they forgot to tell you about autism – the stuff that transformed my life as an autism parent by Debby Elley.

Post your problems or answers on Facebook The National Autistic Society, email YourAutismMag@nas.org.uk, or write to Your Autism Magazine, The National Autistic Society, 393 City Road, London EC1V 1NG. By writing to us with either a problem or an answer, you give consent for your contribution to be published. We reserve the right to edit submissions.

The sender of answer two, who wishes to remain anonymous, wins a copy of Fingers in the sparkle jar by our ambassador Chris Packham.

YOUR AUTISM MAGAZINE

How do I...

cope with job interviews?

If the thought of a job interview is enough to bring you out in a cold sweat, you are not alone. Catherine Leggett, our employment consultant, sets out some of the adjustments you can ask for and how to manage your anxiety.

Ask for questions in advance

If you discIose your autism, you can ask for some small changes to the interview. Some employers can feel nervous about giving out questions in advance, in case it gives you an unfair advantage. In the past, I’ve asked for questions an hour before the interview and for the candidate to be able to write some responses in a quiet room, away from the other candidates. This really helps with processing the questions and formulating meaningful answers.

A quiet interview room and place to wait

Ask for the interview to be held in a quiet room with no interruptions. Employers need to check for background noise, such as people walking in corridors, doors closing or footsteps on the floor above, as these can be distracting and overwhelming for an autistic person. A lot of recruiters will ask you to wait with other candidates, often in a busy foyer or corridor. So ask for a separate, quiet and private place to wait.

Ask for the interview to be held at a good time of day for you

Bring an advocate

Ask an advocate, support worker or a friend to attend the interview with you. They can help if you are having problems processing a question or controlling your anxiety. They can also prompt you to refer to any notes you’ve made beforehand.

Ask for the time of day

You can ask for the interview to be held at a good time of day for you. Ask for an earlier time if your anxiety will build on the day or a later time to avoid rush hour.

5 Practise asking for more time to answer a question

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Give the interviewer information

We have tips for interviewing autistic people at www.autism.org.uk/ employers. Print and supply this ahead of the interview so the recruiters are aware of some very simple adjustments they can make. Also, prepare a simple bullet pointed list of how your autism affects you. Don’t just cover areas that you may need some support in, include your strengths and skills too.

HOW DO I? • FEATURE

Perhaps you feel comforted by a certain texture or object and you can carry something small in your pocket. But first and foremost, feeling prepared is really important. You won’t feel 100% prepared but planning your route, things you might be asked and knowing about the structure of the day will really help you manage your anxiety.

You can ask for questions in advance to write down some answers

Feel your best

Get a good night’s sleep. Try to eat an hour before the interview and drink plenty of water. Ensure you’ve tried wearing your interview clothes beforehand so any sensory considerations are addressed. Pack your bag the night before and make sure you know your route to the interview. You’ll feel more confident if you’re not worried about these finer details and your energy levels are at the optimum level.

Practise and prepare

Really research the job and organisation. Lots of organisations profile staff working in various roles on their websites. If it’s a competency-based interview, prepare some scripted responses and practise them with a friend. There are websites that tell you about questions you are likely to be asked for particular roles and how to formulate your answers. Refer to your notes during the interview if you need to and you’ll be able to talk more confidently about your skills. Rehearse asking for more processing time in the interview too. Write down a phrase such as “I need to think about that for a moment” and practise using it.

Do what works for you and plan/prepare as much as you can

Decide on your approach to eye contact

A lot of recruiters rely on eye contact. It’s very difficult to know when to disclose, but if you have very different ways of expressing yourself non-verbally and that includes facial expressions and eye contact, you really need to consider disclosing. If you’re not sure what your eye contact is like, ask a friend for their opinion. If you don’t disclose, there are other strategies. You can select a point on one of the interviewers’ faces to look at, or try to look in their general direction.

Ultimately, the employer will decide whether they make adjustments to the interview if you disclose your autism. The legal test of adjustments is: are they reasonable and practicable? For example, if you are asking for a private room to prepare in and they don’t have that space, it’s not practicable. So they can say no. What helps is explaining the importance of not having anything that will disadvantage you from being able to demonstrate your suitability for the role and which will prevent the employer from being able to see your talents. If an employer won’t consider very simple adjustments, think if this is the right job for you. If you need adjustments for interview, you will probably need some for the role. As much as an interview is about the employer seeing you, you need to make sure they are right for you too. ●

Useful resources

• Visit https://network.autism.org.uk/knowledge/insight-opinion/top-autismtips-employment to see our interview tips videos.

YOUR AUTISM MAGAZINE

INTERVIEW • TALIA GRANT

Talia was diagnosed when she was eight

“I embrace my

uniqueness” Hollyoaks’ new autistic character is played by Talia Grant. She told us about school, growing up and how it feels to be an autistic actress in a mainstream drama. I N T E R V I E W B Y S U Z A N N E W E S T B U RY

How does your autism affect you? I feel like I experience the world more vividly and intensely than others. This can be a good and a bad thing. It means I can be super-passionate about something but then I can sometimes feel totally overwhelmed by everything. I think anxiety is probably the biggest hurdle for me. When were you diagnosed? I was diagnosed in August 2009 when I was eight years old. I had to be diagnosed privately as no one in my school believed there was anything different about me. It sounds like you didn’t get support at school… I cannot even begin to tell you how hard school was from day one to the day I left. Now I am working, I am beginning to realise it shouldn’t have been that way. Most teachers either didn’t believe I was autistic or ignored that I was autistic. Relationships with my peers have also been difficult. Every now and again I would get a good teacher who ‘got’ me and I am

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so grateful for them, they kept me going. School became so difficult for me that, for the past four years I have only managed a few hours a week. Even though I had an EHCP (or Statement back then) from age 11, my mum had to really fight for me to get the help I needed. In the end it really worked for me but I only got what I needed in the last eight months, I wish I had had it sooner. What else did you find hard, when you were younger? School, friendships, old Victorian pictures, certain smells, loud noises, mean teachers. I felt like an alien and I didn’t know why but now I just accept it. Deep down I’ve always known who I am, the only difference is I learned that I shouldn’t hide it and I embrace my uniqueness. I remember feeling really low and I think those feelings came from not fitting in and not being accepted. How does it feel to be the first autistic woman to land a part in a mainstream soap opera? I cannot even tell you how proud and blessed I feel. It was one of my family friends who saw the advert on social media and I love the way the makers of Hollyoaks went about casting. We all had a picture of the building and the people who would be there and we were told exactly what would happen in the audition. This really

helped me as I find unpredictability and change difficult. When I was told I had got the role I just couldn’t believe it… I still can’t. It’s like a dream come true. I have wanted to act for as long as I can remember. How have other autistic people responded to the news that Hollyoaks is going to have an autistic female character? Everything I have seen has been really positive so far. I have also connected with a lot of other black autistic people, like myself, this is a first for me and for them! This has been really cool as I’m meeting new people and I love the idea that we can help each other out. You’ve said: “For a long while there has been no representation on screen of autistic women, especially autistic women of colour, so I am really looking forward to developing the character of Brooke and representing something that perhaps people are unaware of.” Can you expand on this? I am glad that we finally have a character who will represent those girls like me, who go under the radar and no one picks up on. For people who don’t know about autism, I think it will be a big revelation. There has been so little representation of autistic girls but even more than this, autistic girls from a BAME background. There hasn’t been

“There has been so little representation of autistic girls but even more than this, autistic girls from a BAME background.”

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“Never let anyone tell you that you cannot do something. There is a whole world out there.” Talia as Brooke Hathaway

anyone I can look to growing up and say, ‘She’s just like me.’ Your mum, Carrie Grant, voice coach and campaigner, has said “I’m pleased that we’re getting different images of autism out there now, it’s not just one thing, it’s really multifaceted.” Do you think that’s the challenge now, to get different portrayals of autism represented so people have a better idea of autism as a spectrum? 100% yes, the media and TV have a big role to play in getting awareness out there. We have to accept that Brooke is one character, she will never be able to represent everyone, but hopefully she will show a little bit of what autism can look like. Is your character, Brooke Hathaway, a lot like you? How would you describe her autism? She is like me in some ways but definitely not in others. She masks as happy go lucky but underneath she is anxious about getting things wrong; in fact, she is worried about getting everything wrong. Sometimes she reads situations wrongly and at other times she has real insight, but doubts herself. She is incredibly literal and this gets her into some very funny situations and some very tricky ones too. She is supersensitive to sound and wears her headphones to help her shut out the outside world and overload. She’s also incredibly likeable, kind and empathetic.

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Did you input into her character? Yes, I had a whole afternoon on script advising and this continues as scripts come out. I’ll say if I think I would never do or say that, they really want to get it as accurate as possible. They have a good idea about what it’s like to be autistic. What do you need from other people as an autistic young woman? What should they understand about you? Be patient with me, sometimes it takes me a little longer to understand what you are trying to communicate. I don’t read faces very well. I pick up on people’s energy and I can often read their inner feelings. If what someone says contradicts those feelings I am getting, I can sometimes get confused. If you can provide me with a safe, predictable structure that I have had some input in building, then there is every chance I can manage to be flexible or manage change. I need a lot of reassurance. If you are going to tell someone else off and you don’t mean it for me, then tell me, because I will always think you are telling me off. Just a simple thumbs-up is enough. Your sister Imogen is also autistic and Olivia, Imogen and Nathan have ADHD – what’s family life like at home? Our family is pretty mad but it’s all love! We are accepting of everyone which allows for an open environment

at home. My mum and dad really understand all of us and that helps. They love us just the way we are. Who are your role models? People who inspire me are Angela Davis, Jean-Michael Basquait and Erykah Badu for sure. Actors who inspire me are Viola Davis, Robin Williams and Angela Bassett. What’s your advice to other autistic young people who are interested in acting? Never let anyone tell you that you cannot do something. There is a whole world out there. Especially if, like me, you have had a terrible time at school, honestly, it does get easier. I’m just about finding out. Find a good theatre group to be a part of and don’t be afraid to shine or be yourself. What do you enjoy doing when you’re not acting? First up would be art, drawing especially, because it’s therapeutic. Thrift shopping, watching crime mysteries on YouTube, watching movies, self-care/self-love, whether that be dancing in my room to music, meditation with my crystals/ incense, or sitting in the sun, being with nature. I also like poetry, going to my church youth group and my performing arts school at the weekends. ●

Find out more

• You can watch some of Talia’s appearances on Channel 4, E4 and at www.channel4.com/programmes/ hollyoaks/on-demand.

Graphic by Jessi Crowther, 11, showing how she feels about moving to secondary school

FEATURE • MASKING

Behind

the mask

Do autistic men mask as much as autistic women? Jessie Hewitson, author of How to raise a happy autistic child, thinks so.

asking is when an autistic person pretends to be non-autistic. It can start at a very young age: the autistic writer Laura James describes, at the age of five, first being aware she was different to the other children in her school and thinking she must do everything in her power not to let anyone know this. Research shows women mask more than men (but that boys and men mask too). It is believed that girls’ and women’s propensity to

AUTUMN 2018

mask, or perhaps their ability to do a better impression of a non-autistic person, is one reason behind them not getting diagnosed as much. This is starting to be questioned by some autistic men, however, who feel that boys and men mask as much as girls and women. I instinctively feel this might be the case too, as I’m the mother of an eight-year-old boy who masks a great deal at school. An example of this was last September. We visited his new class, meeting his new teacher and teaching assistant the day before he started

term. He seemed very happy. As soon as we left the school gates, however, he lashed out at me and started crying. It had been too much − and even I, his mother, had no idea. A SURVIVAL STRATEGY Recently I did a talk with Laura James where we had discussed masking, among other things. After the talk, a man came up to me and said he was autistic and felt men masked almost as much. An East End cockney, he said he wouldn’t have survived while at school if he hadn’t

Graphic by Jessi Crowther, 11, showing how she feels about moving to secondary school

MASKING • FEATURE

“I’m the mother of an eight-year-old boy who masks a great deal at school.” masked. He now had a mask for work, one for being with friends and one for home. He said he had no idea who he really was. MEN AND MASKING This conversation stayed with me. Since then, I’ve asked more men about their masking. Jamie Knight, an autistic man who is a senior accessibility specialist at the BBC, points out that as a child, “I was taught that my responses to environments that harmed me were wrong, and from a young age I was encouraged to ‘cope’ and ‘manage’… In my 20s, I saw my role as to be ‘as normal as possible’. I got myself into some pretty miserable situations. My life fell apart and I got ill.” Andrew Carpenter, an autistic man in north London who trains companies in autism awareness, adds that “masking is now so ingrained in me I don’t think I could stop it. I make sure that I smile/make eyecontact at people in the street, in shops, in any transaction/interaction, but this is done on auto-pilot, though it doesn’t ever feel natural.” The consequences of masking are severe. At the International Society for Autism Research (INSAR) conference

Jessie Hewitson

in May, masking was named as a factor in the high suicide rates that we see among autistic adults. We know that, autistic or not, the bigger the gap between who you are and who you appear to others, the greater the mental health problems. “It’s about constant self-doubt, an understanding that I really don’t know my true self, or how I feel a lot of the time,” adds Andrew. “Perhaps there isn’t a true self... but most likely it’s just utterly lost or broken under years of personas and layers of strategies to get by in an alien world. This is exhausting and eventually the pressure becomes crushing.” Mandy Gardner is a woman who has recently received a diagnosis of autism. She is the wife of Alan Gardner, the TV presenter, and mother of three autistic children − two men and one woman − all of whom mask, most commonly at work and in some social situations. ROOTED IN ANXIETY She believes masking is rooted in anxiety. “I no longer work but when I did I had to be professional, I had to be a responsible adult. I couldn’t be me. It was exhausting. I had a bout of severe anxiety. I now suspect this was autistic burnout, but I had to fight the anxiety, take medication and keep going to work. If going out with a friend I would dress according to how they dress, so I blended in. I feel I mask with my parents, so they don’t see the real me, I think this is to protect myself, but I don’t fully understand why.” Dr Felicity Sedgewick, who is a post-doctoral researcher at Kings College London, thinks we could think about things in a different way. She says: “I think we may need to move from conceptualising autism as a ‘male’ or ‘female’ phenotype, to talking about ‘externalising’ or ‘internalising’ presentations, with the internalising presentation of autism

being more commonly found in autistic girls and women (but not exclusively so), and being associated with factors such as higher anxiety, more camouflaging, and greater social motivation.” For parents and carers, who are interested in how they help their autistic child be happy, allowing them to be their true selves and putting less pressure on them to mask is the best way we can help them – regardless of gender. I’m now conscious of this issue with my son and I’m trying to help him reject the pull to be “normal” (which means I need to reject it first). Let’s not aim for normality, which is such an unambitious aspiration. Let’s allow our children to be themselves − in all their autistic, stimming glory. ●

Jessie Hewitson is the author of Autism, how to raise a happy autistic child, published by Orion Spring.

Find out more

• Do you think autistic men mask as much as autistic women? Email YourAutismMag@nas.org.uk and we will publish a selection of your comments at www.autism.org.uk/ digitalyam.

YOUR AUTISM MAGAZINE

FEATURE • SHOPPING

Autism Hour

is back!

We’ve got a whole week of Autism Hours across the country starting at 10am on Saturday 6 October. Head of Campaigns, Tom Purser, explains how you can take part and bloggers James Sinclair and Samantha Tomlin say why this initiative is so important to them.

he UK’s first mass autismfriendly shopping hour is back for a whole week starting on Saturday 6 October from 10-11am. Last time, 5,000 retailers took part and we’re hoping even more shops will open for us this year. What is Autism Hour? Autism Hour is a chance for you to shop with the lights dimmed and the noise lowered and for retailers and

their employees to learn more about providing an autism-friendly service. Why is it so important? Our Autism Hour is designed to address one of the biggest issues for autistic people and their families – social isolation. We know from our research that 79% of autistic people feel socially isolated and 64% of autistic people and their families avoid going out to the shops specifically. This can’t continue.

5,000 shops and services took part last year, including Sainsbury’s

24 A U T U M N

2018

In 2017, as part of our campaign to create a more autism-friendly world, we held the UK’s first Autism Hour to help to address this. Across the week, over 5,000 shops and services held 8,080 quiet hours where autistic people and their families could shop, bank, browse and even bounce on trampolines in an environment where lighting and noise was dimmed and staff had been given information about autism so they could be more helpful and understanding. We know that one hour does not, by itself, change the world. But for lots of the businesses in 2017’s Autism Hour, this was just the start of their journey. Many of last year’s participants are now working towards our Autism Friendly Award so they can become more accessible all-year round. We also know that the awareness created across the retail sector by Autism Hour has had a longer term impact and we’ve seen participants from last year

“Autism Hour is designed to address one of the biggest issues for autistic people - social isolation.”

FEATURE • SHOPPING

“Many of last year’s participants are working towards our Autism Friendly Award to become accessible all year round.” making Autism Hour a regular event across their stores. In 2018 we want Autism Hour to be even bigger and to make more of a difference. Shops will still be able to hold their hour at any time across the week but we will be launching at 10am on Saturday 6 October so that more autistic people and their families will be able to take advantage of the opportunity to shop without the usual overload. Which shops are taking part this year? The Entertainer, Sainsbury’s, Workman Shopping Centres and many more.

Holly and Katie visited Clarks with their mother Jo during Autism Hour 2017

Were autistic people involved in deciding the criteria for making shops autism-friendly during Autism Hour? We spoke to autistic people and their families to find out which adaptations and adjustments would be most beneficial to them. We also spoke to businesses that have already conducted autism quiet hours to determine the most impactful changes they made. Where can I find out more? Find out more at www.autism.org.

uk/autismhour. Sign up there and we will email you closer to the time to let you know which shops near you are taking part. I want to get more involved… Why not approach shops in your local area and ask if they will take part? Maybe you know somewhere that already holds similar sessions whose story we could highlight? Either way, head over to our website at www. autism.org.uk/autismhour where you can learn more about Autism Hour and how you can get involved. ●

YOUR AUTISM MAGAZINE

FEATURE • SHOPPING

Why we’ll be taking part in Autism Hour... James Sinclair “When I was younger, I really wanted to visit the toy shop. However, with all the flashing lights, loud noises and crowded shop floors, I often became overwhelmed and erupted in a manner which, no doubt, caused some onlookers to describe me as ‘having a bit of a wobbler’. Last year, I revisited one of these stores as it, along with many other shops, was taking part in Autism Hour. I was amazed by how their small changes had made such a huge difference and the joy which I had always expected, but never found, was as easy to locate as the Pokémon figure I took home that day.

Samantha Tomlin and Henry “Going shopping has always been a particular challenge with Henry. Not only do shops often trigger a meltdown for him due to the sensory overload, they have also been the

Find out more:

Even when one participant did become quite upset during the event, it was nice to see that his mum didn’t have to explain her son’s condition to everyone around (something mine must have done close to a billion times for me). This experience is why, I believe, the autism community needs Autism Hour as it gives us the freedom to take part in activities many take for granted. It also trains staff, shares information and raises awareness of autism, so the effects and positive experiences surpass the 60 minutes they begin with.” Read more on James’ blog at http:// autisticandunapologetic.com

place I have felt most judged for my parenting by the general public due to a lack of understanding of why Henry is acting in the way he is. When Henry was two, we were in a shopping centre at Christmas. I had taken Henry to meet Santa Claus with his older brother. The shopping centre was very busy, the music was loud and the place was covered with Christmas lights. When Henry saw Santa he just started screaming, the Santa didn’t know what to do so he just started holding him to try to calm him down. Henry hates being touched so his meltdown escalated. He ran over to a Christmas tree and grabbed it, the whole thing fell down and everyone stared as though I was the worst mother in the world. After

• Sign up to take part in Autism Hour at www.autism.org.uk/autismhour. • Find out about our Autism Friendly Award at www.autism.org.uk/afa.

26 A U T U M N

2018

that, I didn’t take Henry out shopping for a year because I was just so worried about being judged. Since then, I have seen a shift in how many people have heard of autism but I know Henry and I are not alone in feeling that a lot of people still don’t understand. I hope Autism Hour will help shops to not only make their venues more autism-friendly but also ensure that staff have a basic understanding so they know what a meltdown is. This would certainly make a huge difference to my family.” Sign up to take part in Autism Hour at www.autism.org. uk/autismhour.

FEATURE • OUR STORY

Paul and Michael always find out about quick queues and other services for Levi and Lucas beforehand

Our story

Paul, Michael, Levi and Lucas

Paul and Michael face many challenges when they’re out with their autistic twin boys Levi and Lucas, but that doesn’t stop them enjoying trips together…

e are Paul and Michael AtwalBrice and we live with our identical twin boys Levi and Lucas. They both have a diagnosis of autism spectrum disorder and also have life-threatening epilepsy. Both boys are non-verbal and need full support with day-to-day living. As a family, we enjoy bike rides and trips, and the boys love CBeebies and bouncy balls.

GETTING A DIAGNOSIS Levi and Lucas were three when they received a diagnosis after months of meeting with the medical team and occupational therapist. We had a big meeting at the boys’ nursery, with everyone round the table, with all the signs pointing to autism − ‘lining things up’, ‘not liking change’, ‘poor eye contact’ etc. We were then referred to the National Autistic Society’s EarlyBird programme − we completed the

three-month programme of weekly sessions and home visits. This opened our eyes to a whole new world and we began to understand the boys’ world. We are still in touch years later with the team. We also met parents who were going through similar situations and this really helped. Now, Levi and Lucas go to the National Autistic Society’s Robert Ogden School. We use the same PECS book at home as the school and also communicate with the boys using photos of objects. DAYS OUT AND HOLIDAYS Levi and Lucas have daily struggles − the epilepsy is a big thing on top of their autism. Things like

James was diagnosed at two

Levi and Lucas try sailing AUTUMN 2018

MY STORY • FEATURE

“It’s difficult but we try to give the boys the best experiences and introduce them to new things they might enjoy.” hospital and dental appointments can be extremely challenging and they can have sudden outbursts at places, bursting into tears. Sometimes you know what has caused it and sometimes you don’t, so you desperately try to find out. When they’re unwell, it’s a guessing game, as they aren’t able to tell us what’s wrong. We still have to think very carefully on days out and plan − we have turned up at theme parks and have had to go straight home if the boys become inconsolable. It’s difficult but we try to give the boys the best experiences and introduce them to new things that they might enjoy.

We first took the boys abroad aged three. We were told by their GP not to, as this “wouldn’t be fair on the other people on the plane”. He had seen the boys many times and knew how upset and distressed they can get. He prescribed them Diazepam to use on the flight to calm them, but we chose not to use it. The airport was difficult − the boys found the business of queuing and sound of the airport very distressing. Since then we have planned much better. We book special assistance to guide us through the airport, get us through the airport security and check in much faster to help keep the boys calm. They seem to realise

now that the airport means they’re going somewhere nice! We take their DVDs and iPads on the plane to keep them entertained. Changing them on the plane can be difficult – they’re 12 now – but the staff help a lot and make a private area to change them in. Levi and Lucas don’t like very

YOUR AUTISM MAGAZINE

FEATURE • OUR STORY

Paul and Michael’s top tips for days out:

loud noises and will put their fingers in their ears. They don’t like waiting around or being still, so if a plane or train is delayed they will get upset so we have to keep them moving around as much as possible. It can be very upsetting when people point, stare and make comments. If we go for a meal on holiday and the boys suddenly scream or throw food and cutlery, most people are great but because autism is a hidden disability, many just think they are naughty or badly behaved. More understanding of

“They are much more settled, calm and now used to going to different places.” autism would help us, although things are getting better. We also have autism alert cards to hand out and we tell people about autism. Looking back to when the boys were three and their GP told us it wouldn’t be fair on other passengers to take them on a plane, we are so glad we did, as they are much more settled, calm and now used to going to different places. They enjoy our trips away so much now! There are still some difficult times for them but we face them and get through them together. ●

Further information

• Read more tips for planning days out at www.autism.org.uk/holidays-and-trips. • Paul and Michael called our Helpline for support. We rely on donations to fund it – please show your support today with a gift at www.autism.org.uk/appeal. • As a member, you can request an autism alert card for free. Phone our Supporter Care team on 0808 800 1050 or email supportercare@nas.org.uk. • With Visit England and the Inclusive Tourism Action Group, we’ve produced Welcoming autistic people – a guide for tourism services, sharing top tips for tourist venues to improve their customer service for autistic customers. Read more at www.autism.org.uk/visitenglandguide.

AUTUMN 2018

Be prepared. We take they boys’ iPads and their favourite snacks to help keep them calm − this helps us a lot.

Ask questions beforehand. If you’re going to a theme park, always ask what services they offer. Many have quick lines or quiet rooms. It’s always best to find this out before you go.

Use visuals. We always show the boys the theme park or activity on the iPad before we go, so it’s familiar to them.

Countdown from 10 to one we find a countdown is a useful way of signalling when a fun activity is about to end.

Don’t be afraid to try, and never make yourself a prisoner in your own home.

Don’t be afraid if it fails. If it doesn’t work out the first time, don’t be afraid to try again. We have built this up over time from not even being able to go out to now going on a 10-hour flight!

ADVICE • HOUSING

Sharon and Mattie

Planning a move to supported living Sharon Howley’s son, Mattie, has recently moved into his own flat. She writes about how this was achieved and gives her tips for other parents.

attie has a diagnosis of autism, learning disability, epilepsy and OCD. He does not use language to communicate. He attended a special needs day school until he was 19. Planning for Mattie’s transition to adult life started at the year 9 annual review of his statement. We established that, as a first step toward his independence he should attend a specialist residential college. The placement broke down after a few months and he was sent home. We then tried a supported living provision already up and running. This also broke down after just five days.

Assessing Mattie’s needs In an effort to understand what had gone wrong, the community support team commissioned a clinical psychologist to assess Mattie. The assessment took place at our home over several months. Everyone in his circle of support participated

and a plan was drawn up. It was established that the multi-disciplinary team would need to be involved in the planning, transition and offer ongoing support to the care provider. This assessment report was crucial in identifying his very particular needs, the skillset of his staff and type of accommodation required. So now we knew how to meet his supported living needs, the next step was to fund it. Social services approached Health and applied for funding from Continuing Health Care. Funding was agreed. Suitable provision was not available in our local area and had to be specially commissioned. The community support team looked at properties that could be adapted into flats. A house was purchased and plans drawn up. It was subsequently decided that it was unsuitable as the flat would be too small. A very frustrating four years followed where land and properties were considered, plans drawn up but were then found to be unsuitable. Eventually a suitable

“An assessment was crucial in identifying Mattie’s very particular needs, the skillset of his staff and type of accommodation required.” 32

AUTUMN 2018

house was found and planning to adapt the house for five young autistic adults, with our son in a self-contained annex, was successful. Needless to say, the adaptation took a lot longer than anticipated. Meanwhile our son had been living at home for five years. We had a substantial Direct Payment package to employ personal assistants to support his daytime activities as there was not a suitable day service available. Our family found this period very stressful. There was so much uncertainty. I could not work as our house was Mattie’s base and I needed to be available for people picking up and dropping him off and to cover staff sickness.

Preparing for the move Apart from his brief time at college, Mattie had lived at home all his life and was very happy to do so. We knew leaving the family home was going to be difficult for him. In preparation, reports were prepared and updated, a speech and language

ADVICE • HOUSING

Essential advice Sharon’s tips on moving to supported living:

Living independently and (below) cooking Sharon a mother’s day lunch

Transition planning must start early and should involve the young person, the parent and a team from social services, education and health. Any plans are reviewed annually until the young person leaves school through to the move into their new home. Ensure the young person is meaningfully involved in any decision making in a way that suits them. Use person centered planning and gain the views of the young person using a communication passport or the resource This is me! Explore and appraise all accommodation together. Our charity has a range of residential and supported living options or your local authority or trust can tell you what’s available locally. It is essential that the young person is given plenty of opportunities to visit their new home before they move there. Before funding a placement, the local authority or trust will want evidence of your child’s eligible support needs. Be prepared to gather evidence for assessments. If you have any difficulties obtaining this, you have the right to request copies of any information held about you or your child by the LA or trust. Whilst transition planning aims to reduce anxiety, it is likely to be a stressful time. You and your child may be entitled to financial support and community care services from your local authority or trust.

therapist produced a communication passport, an occupational therapist assessed needs around leaving the property and epilepsy care and a social worker updated Mattie’s care and support plan. So with the supported living house adaptations underway, the tender for a care provider went out and a provider was appointed. Staff from the care provider started to come to our house to get to know Mattie in April 2017. He was allocated a keyworker who spent a lot of time getting to know him. He wrote risk assessments to prepare the staff team and built up a very good relationship with Mattie. In preparation for the move, we had an information day with the staff team and multidisciplinary team so that plans could be shared and we could discuss any issues. Once the basics were in the property, Mattie started to spend a few hours there with his new staff. From April, he progressed from spending an hour or so to a few overnight stays a week. In November,

he officially moved in. Mattie’s now been living in his own accommodation for seven months. He is still very attached to home and visits often. I visit Mattie in his new home every week too. He’s doing well but still needs lots of support to think of his supported living accommodation as home.

Useful resources

• Find out more about all aspects of transition at www.autism.org.uk/about/ transition/leaving-school.

YOUR AUTISM MAGAZINE

ADVICE • EDUCATION

Starting back at school Read our advice on preparing your child for the new school year and what to do if they’re not keen to go back. BY DANIELA ROUSE, HELPLINE ADVISER

eptember is approaching, bringing with it the new school year. For many families this can be a stressful time, especially if their children are starting a new school. With plenty of preparation however, it is possible to make a child’s transition into a new year go much more smoothly.

Processing time One of the key things to remember when you are preparing a child for the new school year is giving them time to process new information before they start. If they are starting a new school or college you can put a picture of their new building up on the wall or the fridge, so that they can see it every day and start to become familiar with it. Add to it anything else they will need time to process, such as pictures of their new teacher (or the teacher’s name), classroom, and a map of the school if you have one. Explore the school’s website for more details of what it will be like. Many schools, colleges and universities offer virtual tours or photos on their website. If you can

AUTUMN 2018

find images of the places where they will be spending time (lunch hall, classroom, assembly hall, gym, playground) then it may give your child time to process these places before even getting there. Even if you’ve been around on a tour of the school before with your child, this can still be helpful. You may find it helpful to spend a few days towards the end of summer practising the morning school routine. Are they wearing a new uniform that they need to get used to? Is it a new route? Make the journey a few times with your child so that they are familiar with it.

Create strategies in advance Your child may have specific concerns about the new school year. It may help them to discuss

these concerns with you, and create strategies that they can use if they have a problem. You may want to think about who they should approach if they need help, relaxation techniques, and what to do if they feel overwhelmed. If they are starting college or university, you could also consider strategies for what to do if a session is cancelled, or moved to a different location. Remember, your child may come up with more specific worries as the

“Rather than punish a child for not attending school, you can reward them with a token for each day that they have successfully gone in.”

ADVICE • EDUCATION

With preparation, you can make a child’s transition into a new school year go more smoothly

• Who do they need to look for

“Create a visual timetable showing ‘school days’ and ‘home days’ and the morning routine for each.”

start date gets closer, and creating individual strategies for these can help them to feel more prepared. Write these strategies down and keep them somewhere that your child can access them if they start to worry, so that they can review their plans and add to them as needed.

Prepare for the first day You can use visual supports to ensure that your child remembers everything they have to do. Whether that is a list of school

supplies, printing the bus/train timetable to put on the fridge, or a step-by-step guide to their morning – keep it to hand so that your child can refer back to it if they start feeling anxious. Create a plan with your child about the very first day, trying to answer the following questions: • What time do they need to be there? • How will they get there? • Where do they need to go once they get to the building?

when they get there? • What time do they finish? • How will they get home again?

School refusal It is important to make sure that your child is getting the right support in school in order to allow them to feel comfortable and reduce anxiety – but first you have to get them there! Here are five strategies that you can try at home if you have a child who is refusing to go to school.

Increase the structure in the mornings Create a visual timetable showing ‘school days’ and ‘home days’ and the morning routine for each. You may want to allow extra time for the morning routine on school days, as reducing rushing in the morning can help keep anxiety levels down.

YOUR AUTISM MAGAZINE

ADVICE • EDUCATION Think about who they should approach if they need help in school

Break going to school into more manageable parts Your child may need to spend some time getting ready for school, but then staying home. Then you can progress to getting ready and making the journey to school, but not going in. Eventually you can try to build up these little steps to spending the full day at school, making sure that they are comfortable with each stage before moving on. Remember that every little step is still progress, and you can reward your child at each stage. You will need to work with the school for this strategy; for a school refuser a partial timetable at the start of the year can save education time later on. Moving too fast can make a school refuser’s progress towards a full timetable halt, or even regress.

Social stories Some children may not fully understand why they need to go to school. You may want to try using a ‘social story’ to explain why children go to school and how education leads to careers, earning money etc. This may be more effective if you can link it to their special interest, or what they want to do when they are older.

Reward tokens Rather than punish a child for not attending school, you can reward them with a token for each day that they have successfully gone in. These can allow a child to work towards a reward at the end of the week, half term or year. You can adapt the rewards for age, progress or difficulty.

Map their worries Try to find out what exactly your child is anxious about. You can have them rate areas of

the school from ‘not very scary’ to ‘very scary’, so that you can see if they are concerned about lessons, the playground, the lunch hall, or any other places in the school. For younger children or those who struggle with verbal communication, they may be able

to colour in a map of the school in red, orange and green to show how they feel about each area. Once you know more about what they are worried about, it is easier to put strategies in place to help them cope, or make the school aware of what is going on.

Useful resources

• You can learn more about transitions, school refusal and getting extra help in school at www.autism.org.uk/about/in-education. • Our Education Rights Service can provide information, support and advice on educational provision and entitlements for children and young people on the autism spectrum. You can contact them at 0808 800 4102. • Our Transition Support Service can help young autistic people aged over 14 and their parents or carers looking for advice on the transition to adulthood or further education. You can contact them at 0808 800 0027. • Brain in Hand is an anxiety management app that supports users to develop their own coping strategies, and has a contact centre for when you may require extra support. University students can access Brain in Hand through Disabled Students’ Allowance, or it can be added to an Education, Health and Care plan (EHCP) for younger students. You can find out more at www.braininhand.co.uk.

YOUR AUTISM MAGAZINE

Meet our team

Sharon McDaid, Transition Support Service Adviser

ow did you get involved with the transition support service? I’ve been a National Autistic Society supporter for years. I was considering our autistic son’s post-school future and writing my Masters dissertation on transition planning for autistic young people when I saw a job advertised which combined all these passions! What are parents often concerned about when they call? We take calls from parents and autistic young people themselves. A common concern is the lack of an appropriate transition plan. Too often, young people come to the end of their time at school and no one has helped them or their family figure out what happens next. Another worry is the shortage of options, especially for those with high support needs. We hear about poor provision and services that do not consider the specific needs of autistic young people. We can help those considering potential service

providers to ask the right questions and offer advice on accommodations and adjustments that can help. What do you like most about your work? What are some of the more challenging aspects? I like helping people know what their rights are and supporting them to feel empowered and knowledgeable

“I like helping people know what their rights are and supporting them to feel empowered and knowledgeable when making decisions about their future.”

when making decisions about their future. It’s challenging knowing that many young people and families have to work so hard to have their voices heard and their needs considered. There are fewer legal protections for autistic young people when they leave school, especially here in Northern Ireland as Statements of Special Educational Needs cease to apply. Is there anything you’ve learned from your work that you would want everyone to know about these transition periods? Engage the young person as much as possible; consider what supports they may need in the future and contact the relevant services early. Contact us for advice on steps you can take to optimise the move to adulthood. When you’re not at work, what do you enjoy doing? I start each day with a gorgeous coastal walk and love going to the cinema with my son who is a huge film fan. ●

Find out more

Contact our Transition Support Service on 0808 800 0027 or complete the enquiry form at www.autism.org.uk/transition-support.

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RESOURCES

The Asperger teen’s toolkit

Giveaways To win a copy of Coming home to autism about supporting your child at home after an autism diagnosis by Tara Leniston and Rhian Grounds, email YourAutismMag@nas.org.uk with your name by 30 September quoting ‘Coming home’. The winner will be announced in the next issue.

AUTHOR: Francis Musgrave PUBLISHER: Jessica Kingsley Publishers PRICE: £12.99 VERDICT: Useful toolkit of tried-and-trusted advice for teenagers

I FOUND IT A GREAT step-bystep guide to getting through the teenage years when you are on the autism spectrum. The only thing I would have added is a chapter on obsessions. I loved how it was set out, how every chapter finished with toolkit tips and how you can go online and download additional resources at www.jkp.com to use alongside the book and print off the budget planner, the anxiety/anger help and the antidepression pages so as not to destroy your copy of the book. My son did not seem keen to read the book himself just

The winners of last quarter’s competition to win a copy of Flamingo Boy by Michael Morpurgo are Anna from Leicestershire and Sarah from Winchester. Alan from York has won a signed copy of A Normal family by Henry Normal. Well done to all our winners!

yet, but I have read pages for him on subjects that were bothering him.

Gill Jagger, Your Autism Magazine reader

Become a reviewer

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

Our six favourite… autism-friendly summer trips

HARRY POTTER AND THE CURSED CHILD Part 1 is Thursday 23 August; Part 2 is Friday 24 August. Both start at 7.30. Palace Theatre, London We have partnered with the show to create a specially adapted performance. Final tickets still available – call 0330 333 4410.

EUREKA! THE NATIONAL CHILDREN’S MUSEUM Halifax This hands-on, fun and educational museum offers an accessibility guide, they don’t charge admission for essential carers and if there’s a queue on arrival, they will fast track you in. www.eureka.org.uk/ plan-your-visit/access-information

ROMAN BATHS AND PUMP ROOM Bath Holders of our Autism Friendly Award since 2016, the Roman Baths offers autism-specific guides to help you prepare for your visit, staff trained in autism, and quiet areas on request. www.romanbaths.co.uk/accessibility

Our six favourite continues onto page 45

YOUR AUTISM MAGAZINE

RESOURCES

Fifteen things they forgot to tell you about autism

Keys of the origin: The scions of balance

AUTHOR: Debby Elley

PRICE: £4.79 (Kindle) £6.19 (paperback)

PUBLISHER: Jessica Kingsley Publishers

VERDICT: Epic fantasy novel by autistic writer

PRICE: £12.99

AUTHOR: Melissa A. Joy PUBLISHER: Aeldynn Lore

I HIGHLY RECOMMEND THIS BOOK, especially to parents whose children have just had an autism diagnosis. Really, paediatricians should be handing it out to parents, it would save them a lot of time, and us a lot of angst. Debby shares her journey of raising twins who are both on the spectrum but with very different abilities and support needs, and what it has taught her. It is insightful, supportive and best of all funny and genuine. It comes from the best of all places: actual experience and love. Debby has found ways to explain issues that before seemed to me quite complicated, like echolalia and theory of mind, in very simple and memorable ways. Professionals could learn a lot from her. For example, her explanation of autism itself – like an ice cream sundae, is just brilliant!

MELISSA, WHO IS AUTISTIC, began creating the world of Aeldynn aged 13, and has spent 17 years developing it. The result is a totally immersive fantasy novel, full of rich description. It tells the tale of two young men; Zehn, a righteous law-abiding servant to the people, and Larkh, a pirate, and their parts in a foretold bid for the future of Aeldynn. I particularly liked the description of life on the high seas and the strong female character of Melkhar. Featuring dragons, swordfights and magic, this is a complex and well-crafted novel – a great escape into another world. You can find out more about Melissa and her writing on Your Autism Extra.

Reviewed by Karen Wright, Your Autism Magazine reader

Suzanne Westbury, Editor of Your Autism Magazine

VERDICT: Insightful guide for parents

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

Win a copy of this book by answering our Readers to the rescue question on page 15.

ALADDIN Tuesday 28 August, Prince Edward Theatre, London Disney’s Aladdin is holding its second autism-friendly performance in partnership with our charity. There will be introductions from the cast so audience members know what to expect, and trained staff to support audience members. aladdinthemusical.co.uk/autismfriendly

WINDSOR CASTLE See the spectacular setting of the Royal wedding for yourself with a visit to Windsor Castle. You can discuss your visit in advance with the Access Inclusion Manager. www.royalcollection.org.uk/visit/ windsor-castle/visitors-on-theautism-spectrum

MUSEUM OF LONDON, LONDON WALL AND DOCKLANDS Both museums offer a visual story to help plan your visit, childsized ear defenders and morning explorer events, held before the museum opens to the public. www.museumoflondon.org. uk/museum-london/plan-your-visit/ museum-accessibility

Find out who else holds our Autism Friendly Award at www.autism.org.uk/afa.

YOUR AUTISM MAGAZINE

PHILIP’S STORY

Puzzling it out under the iconic Countdown clock

I’m a… Countdown finalist Philip applied to go on Countdown, and got all the way to the final. BY HERMIONE CAMERON

AUTUMN 2018

ongratulations to 20-yearold Countdown competitor Philip Aston, whose talent for anagrams won him a place in the final of one of Britain’s best-loved TV shows! This is such an incredible and well-deserved achievement for Philip, who has been a fan of Countdown since he was five. Despite his recent onscreen success, life has had its ups and downs for Philip, who was diagnosed as autistic before the age of three. He was diagnosed with an additional language disorder in primary school but received excellent support. Philip’s mother, Susan, tells us that her son battled with anxiety and depression, which many autistic people encounter on a day-to-day basis, while at secondary school. In 2015, life became so difficult for Philip that he ended up dropping out of school. In search of a fresh start, the Aston family moved from Buckinghamshire to North Devon. Here, Philip receives support at home from the staff at Kingsley House, a residential home run by our charity. His difficulties with the education system inspired him to put his talents to use elsewhere, and, following a good few months of practice, he applied for a place on Countdown. After being accepted onto the show, Philip continued his streak of success, winning six games before qualifying for the final. He currently holds the record for

the highest total score for a runner-up in the programme’s history and describes being a Countdown finalist as “such an honour. Marching on to the final means even more, especially as I only won six heat games and beat two players ranked higher than me to come so far.” As well as being an avid anagrammer, in his downtime Philip enjoys watching quiz shows and animated sitcoms, playing on his PlayStation, going to the gym and walking his dogs. He also reads the occasional dictionary and is a fan of racing driver Lewis Hamilton. If you didn’t catch Philip in the Countdown final, you will be able to see him in the programme’s Champion of Champions contest. He goes for filming in October and it will be screened in early January. ●