Issuu

YOUR Autumn 2019

Queen of the screen

We talk to online gamer QueenE

Overcoming challenges Joanne and Soffiâ€™s story

Ride and park

How to apply for a Blue Badge

Plus

Student support, and managing distressed behaviour

YOUR

School exclusions

Autumn 2019 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk

Contributors Hermione Cameron, Florence Leslie 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 Autumn Vol 53, No 3 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.

QueenE on gaming

Contents

Support for students

What’s new?

School exclusion

News special

Readers to the rescue

My diagnosis

Student support

Joanne and Soffi’s story

Helping with distress

Applying for a Blue Badge

Meet the team

“But you seem so normal”

Notebook

“Gaming has helped me”

A round-up of the latest news

The law on welfare deputyship

Christina’s experience

Mum and daughter open up

What you need to know

The pros and cons of autism

QueenE talks online gaming

How to challenge a decision

Dealing with anxiety at work

How Danny and Aysha can help

Challenging behaviour

The Spectrum’s editor, The Goth

Things to read, do and see

I’m an... award-winning woodturner

In 2018, businesses

11,000

Autism Hour

took part in

05 Autumn 2019 3

What’s new?

Get in touch!

Our roundup of the latest news and views

Autism on EastEnders EastEnders started a new storyline in June, which follows Linda, Mick and their young son Ollie on their autism diagnosis journey. For the last eight months, our charity has been working with the EastEnders script team on this important story. Our Director of External Affairs, Jane Harris, said: “Very often, children on the autism spectrum and their parents lose friends after a diagnosis because they don’t understand the challenges they’re facing. “Too many families end up in exhausting fights with councils and the NHS to get the right support. We hope that by following Ollie and his parents’ autism journey, viewers might understand more about the experiences of autistic children and their families.” Jon Sen, EastEnders Executive Producer,

said: “When Mick and Linda start to worry about Ollie’s behaviour, they face various challenges as they search for the answers necessary to help their son. EastEnders has been privileged

to work closely with the National Autistic Society to accurately depict the pressures that can be felt, and we will continue to work together as Ollie’s autism story unfolds.”

Caroline Stevens appointed Chief Executive Caroline Stevens has been appointed the new Chief Executive of the National Autistic Society and will be joining our charity in November. Caroline said: “‘I have been Chief Executive of KIDS for six years and I’ve also been a member of the National Autistic Society for 17 years. One of my three children is autistic and has a learning disability. Far too often, we have had to battle to get essential

4 Your Autism

services for him, so that he can enjoy things in life that the vast majority of people take for granted. Like any parent, I want him to have the chance to live independently, and I am devastated that for too many autistic adults this isn’t the case. For me, this is an exciting professional challenge, but it is also personal. I need society to work better for autistic people – my son’s future depends on it.”

News

Get set for Autism Hour! 5-12 October

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. Shops, organisations and businesses will be holding Autism Hours throughout the week of 5-12 October. Last year, more than 11,000 businesses took part and already this year The Entertainer has declared its support. It was fantastic to see Finsbury Park Mosque in London hold its first Autism Hour in June. Visitors were able to learn about the five pillars of Islam through an animated video and group activities. Afterwards, there was a tour of the mosque and a demonstration of a quieter call to prayer. See which businesses are taking part near you at www.autism.org.uk/autismhour

John Lewis starts autismfriendly shoe fitting

We have worked with John Lewis to launch an autism-friendly shoe fitting service in five stores. The pilot scheme will allow parents to call ahead and discuss ways to make the experience easier for their autistic children, such as private fitting rooms or particular walking routes through the shop. It will initially be available at its shops in White City, London; Bluewater, Kent; Southampton; Cribbs Causeway, near Bristol; and Cheadle, near Stockport.

Long waits for adult diagnosis Waiting times for an adult autism diagnosis have almost doubled since 2016 – according to the Government’s latest Autism Self-Assessment Framework exercise. The average reported waiting time between being referred for a diagnosis and being seen has risen from 16 weeks to 30 weeks. Read what we are doing about this at www.autism.org.uk/

adult-diagnosis-times

All about the CQC

The Entertainer, sponsor of this year’s Autism Hour

Do you have a loved one in residential care? Ever wondered how the Care Quality Commission works to inspect health and social care services? Find out in our new feature at www.autism.org.uk/digitalyam Autumn 2019 5

News

Celebrate the autism professionals you know If you know an outstanding autism professional or team of professionals, why not nominate them for an Autism Professionals Award? Or if you work directly to support autistic people and you’re proud of the work you’ve been doing, you can also nominate your

own team. Our annual Autism Professionals Awards recognise services and professionals who are leading the way in innovative autism practice. They celebrate the work of individuals, teams and organisations who have demonstrated excellence,

dedication and commitment to improving the lives of autistic people. Winning an award will bring unparalleled recognition for the people behind the achievements. Enter your nominations at www.autism.org.uk/professionals

Partnering with the Scouts We are delighted to be working with the Scouts in a project called A Million Hands. A Million Hands aims to get 500,000 Scouts to take part in community action activities to raise awareness and change around social issues. Our charity is leading on the ‘Understanding disability’ theme. Over the next three years, we will be developing resources to get Scouts of all ages to understand disability. From there, Scouts will be going

6 Your Autism

into their communities to create disabled- and autism-friendly spaces where they live. Our Young Ambassadors have helped us design the programme, including Sam, who says: “I have grown up scouting and my scout troop helped me to overcome some of the challenges I have faced. This partnership will help children to understand and accept autistic people nationwide.” Find out more at https:// beta.scouts.org.uk/community

“Giving a gift today could help to support someone like me through a difficult period in their life.” Louisa, autistic woman, cyclist and bowls champion In 2015, when I lost my parents, I knew I was going to face life and being autistic alone. If I hadn’t come across the National Autistic Society it would have been very difficult for me, because I didn’t know a great deal about how to cope by myself. They have given me the best support and guidance and advice, emotionally and with practical things too.

Please give a gift today that could help people like Louisa who need expert advice. Just visit www.autism.org.uk/appeal

Diary dates

What to do and where to go

really seemed to care.” We hope to see you there! For more details and to sign up, visit www.autism. org.uk/allaboard

29 September 2019

The Play that Goes Wrong

11 September 2019

Women and Girls Conference, Edinburgh

We will bring together experts in this field – researchers, practitioners, and autistic women – to explore issues around diagnosing autistic women and girls, share their most recent findings and give tips on the latest best practice. www.autism.org.uk/ conferences

22 September 2019

The Duchess Theatre, London, 3pm This multi award-winning West End comedy has announced its first relaxed performance. A group of accident-prone thespians battle against the odds to make it to their final curtain call with hilarious consequences. Call 0330 333 4815 or email access@nimaxtheatres. com to book your £20 tickets.

5-12 October 2019

Autism Hour, venues nationwide

See page 5 for details of autismfriendly shopping.

18 November 2019 The Matt and Co Comedy Show

The Union Chapel, London Comedian, presenter and our funniest ambassador Matt Richardson presents our annual comedy show. Nish Kumar, Angela Barnes and Katie Mulgrew are in the line-up, with many more to be announced. Tickets are £30 at www.autism.org.uk/comedy

19 November 2019 Bristol Hippodrome

26 January 2020

All Aboard for Autism, Drayton Manor

Our family-friendly day out at Drayton Manor is back! With a Thomas & Friends sponsored walk, a morning of activities from sensory buses to face painting, and free theme park tickets if you reach your fundraising target, it’s a great opportunity to treat the kids. One happy mum said: “The joy on my son’s face during the whole day! Helpful people who

Matt taking a photo with a very happy crowd at last year’s event

Edinburgh Playhouse

The Lion King

10 October 2019

Autism and Mental Health Conference, Leeds

This will give professionals working with autistic people tools to provide targeted support for autistic children and adults with mental health difficulties. This event is a great opportunity to hear from, and network with, acknowledged experts in the field, and to exchange ideas. www.autism.org. uk/conferences

After six autism-friendly performances at the Lyceum in London, we’re really excited that Disney’s The Lion King is taking its relaxed performance around the UK! Get your tickets now or join the waiting list for London’s 2020 show. https://thelionking.co.uk/ relaxedperformances Autumn 2019 9

Law affecting young adults with disabilities ‘needs revisiting’ The parents of three young people with learning disabilities – two of whom are also autistic – launched legal action to challenge law surrounding welfare deputyship. The Mental Capacity Act Code of Practice says that when an adult lacks capacity, decisions should generally be taken in their best interests, and that relatives should only be appointed welfare deputies in extreme or complex cases. However, the families in this case argued that this frequently resulted in them being ignored, and decisions

For more information on the Mental Capacity Act and how it works, visit www.autism.org.uk/mentalcapacityact

were being made by social services departments that did not consider their children’s best interests. Following their efforts and a court hearing in March, the Court of Protection has ruled that the Code of Practice should be reconsidered, and that it should not be presumed that welfare deputyship should be granted only in the most complex cases. This is an important legal ruling that could change the way that many important decisions about autistic adults’ care and support are made. More families may want to be appointed as welfare deputies. The National Autistic Society welcomes this judgment, and we will work with the Government when it updates the Code of Practice to make sure it gives autistic people and their families clear guidance. Autumn 2019 11

iStock.com / BCFC

News special

“I don’t like shopping, but I do like Autism Hour.” Anne Hegerty, autistic woman and TV celebrity

Autism Hour, our week of autism-friendly shopping, is back from Saturday 5 - Saturday 12 October. It’s when shops and businesses dim the lights, lower the noise and help their staff learn about autism. You can find out more at www.autism.org.uk/autismhour

My diagnosis

Bob Kettle

“I only realised I was autistic when my son was diagnosed” Christina on her late diagnosis, and life with a child on the autism spectrum I was diagnosed as autistic as an adult, in February 2017. My son, Luke, was diagnosed in May 2016. When Luke was struggling to meet some milestones, a professional said he had “some autistic traits”. Not knowing what that meant, my partner looked on the National Autistic Society website. As a result, he realised they looked like some of the difficulties I had. He turned the statements into questions and, one by one, asked me if I had difficulties in those areas. Most were things I was already coping with daily.

Read Christina’s poem, But by then it was too late, describing her experiences as an autistic parent, at www.autism.org.uk/digitalyam See more about Christina at www.facebook.com/ C.J.CleverBeautifulNerdLady Want to share your diagnosis story here? Email YourAutismMag@nas.org.uk

However, just because my son and I are both on the spectrum, it doesn’t mean we always experience similar difficulties. For example, he’s a fussy eater, and I’ve never had an issue with food. In trying to help him, I’ve had to learn new things, too. Understanding more about emotional regulation has helped my son function better at school, and has helped me, too.

Trying to fit in Being undiagnosed all that time meant I didn’t know why things were so difficult for me, and led to me secretly blaming myself. I didn’t know I was masking at all; I just thought I was doing what everyone else was by trying hard to fit in. Trying to be like everyone else was an impossible task. The diagnosis changed everything for me. I felt as if I understood why things seemed to be twice as hard for me, and why people had misunderstood me in the past. Things make more sense now. It’s important to share stories like mine. I’m part of a hidden pool of women who have been let down by the system, who have tried hard to have lives and families, and have only realised they are autistic when their children have been diagnosed. Autumn 2019 13

Real life

Joanne and Soffi’s story Joanne and Soffi, from Blaenau Gwent in South Wales, talk about their struggles, and finding support at their local volunteer-run branch My husband and I have three amazing daughters – Ffion, 18, Soffi, 16 and Seren, 13. We also have a dog called Cookie and a cat called Milo. We both work full time – I work as a nurse and my husband is an engineering manager. Soffi was diagnosed as autistic at the age of 10; the process was long and drawn out. She was initially under child and adolescent mental health services (CAMHS) from the age of six for anxiety, but was discharged then re-referred as concerns became more obvious in school. We completed family therapy and parenting sessions, from which Soffi was again discharged. The school then advised 14 Your Autism

another referral, which resulted in her diagnosis. Soffi’s autism means she needs constant reassurance, routines and support to complete daily tasks. She has sensory issues, and the texture of certain clothes irritates her. She can get easily frustrated when too many demands are made of her. For instance, if you tell her to hurry up, she will get extremely upset and stressed. Soffi is also very literal in her thinking – everything is black or white, and rules need to be followed. Her autism affects her socially, resulting in friendships breaking down and having few friends of her own age. She can’t stay on her own, and needs someone with her for constant reassurance. Her anxieties stop her living an independent life. Soffi says: “I find it very difficult to make friends, and find social situations hard. Changes of plans can really affect me, and

Real life sometimes I get very overwhelmed. Being autistic makes me feel lonely, sad and different.”

Stresses at school

Autism has had a massive effect on Soffi’s school life. She has been constantly bullied by her peers, with lots of name calling and abuse. Teaching staff lacking insight about autism have classed her as ‘hard work’, blaming her for most situations that arise. The last few months of her school life have been in and out of her ‘timeout’ area. She had to stop PE because of issues with dressing under pressure, and Welsh because of the stress of understanding another language. The school environment increases her anxiety, leading to low attendance. Despite these challenges, with one-to-one teaching assistant support throughout her time in school, Soffi has just completed her GCSEs. With her statement of education, she was able to access quiet areas, leave class five minutes early to avoid the crowded corridors, and sit exams in a smaller room instead of a large school hall. But we have still found support in school very limited

School has not been a happy time for Soffi and has caused her a lot of heartbreak Joanne

because of funding issues and the lack of understanding of autism by staff and pupils. Soffi adds: “I found school very difficult. Being bullied every single day for being autistic has had a detrimental effect on my mental health. I often felt misunderstood and taken as a joke by my peers. My mum and dad have been my rock, always having my back and supporting me. My sisters also help me in school.”

Seeing my daughter socially isolated is heartbreaking; she desperately wants to be like her peers, have and maintain friendships, and be accepted in society. Soffi’s sisters have also found supporting her difficult, as she can be unpredictable in her actions. She would search them out at school for comfort, resulting in them being overloaded with emotions. Both are registered as young carers. Autumn 2019 15

Real life

A society for autistic people

We would both like to see much more understanding of autism. Soffi says: “I want people to realise that it is not a choice to have autism, and understand how hard it is to deal with so many challenges. I also want people to accept the way autistic people do things, and that it is not a joke.” As a parent, I want changes in society to make things easier for families – more training for bus companies, doctors’ surgeries, hospitals and workplaces, so that autism awareness and acceptance is front line.

Finding local support

Soffi and I have found a lot of support at the Blaenau Gwent Branch of the National Autistic Society. The branch has always been welcoming and supportive to us, and we’ve been involved for three years now.

I really enjoy socialising with people who have the same needs as me, and I love helping at the branch Soffi

I originally attended the support groups for parents, and then became vice-chair and am now chair. We run monthly support groups, coffee mornings, swim and slide sessions, an evening support group for families, and training sessions on subjects such as anxiety. We also run summer trips and hold social evenings where we play darts, bingo, pool and run quizzes. Belonging to the branch has helped us greatly as a family. Knowing there are others feeling and struggling like your family is reassuring, and the advice is professional, with a warm welcome for all. Families 16 Your Autism

Soffi helping out at her local branch

are desperate for support, and running Blaenau Gwent Branch has been such an achievement for us all, especially as we all have so much going on in our daily lives. It has been a lifeline for Soffi. She says: “I’ve made lifelong friends that I would not have without the support of the branch. I really enjoy socialising with people that have the same needs as me, and I love helping. My best memory is singing at the social night with my friend Matthew. I also really loved doing my bike ride, which raised more than £500 for the branch. “In the future, I would love to help other people on the autism spectrum, and help with their mental health, as I understand what they may be going through.”

Extra help We have 116 volunteer-led branches all over the UK. Find your local branch at www.autism.org.uk/branches Does your child need extra help at school? Read our advice at www.autism.org.uk/education and on our online community from other parents and carers at www.autism.org. uk/community

Advice

Applying for a Blue Badge More autistic people will qualify for a Blue Badge under new rules coming into force in England on 30 August 2019. Our Policy and Public Affairs Manager, Anna Bailey-Bearfield, explains how to apply for yours Blue Badges can be really important for autistic people, because just leaving the house can be a challenge. Many face overwhelming anxiety about plans going wrong, and having access to a Blue Badge can make the difference between being able to get out and about and being left lonely or isolated. We have long advocated for changes to Blue Badges, as rules on who qualifies for a Badge have been too focused on people’s physical ability to walk. They haven’t recognised the hidden difficulties many autistic people have with transport. With our supporters, we campaigned for rules to be changed. In 2018, the Government finally agreed to make changes to the rules, which mean many more autistic people will qualify. Earlier this year, the new regulations went through Parliament, and the Government confirmed that the new, expanded rules will come into force on 30 August 2019. In June 2019, the Government issued guidance to help local authorities in England implement the changes. It also committed £1.7 18 Your Autism

Anna Bailey-Bearfield, Policy and Public Affairs Manager

million to help local authorities put in place the new programme.

Qualifying for a Blue Badge There will be two new ways autistic people may qualify for a Blue Badge:

1. You could be eligible, subject

to a further assessment, if you can’t undertake a journey without being at risk of serious harm, if it causes ‘very considerable psychological distress’, or if you have considerable difficulty when walking.

2. You should be automatically

eligible if you have qualified for PIP Mobility Component and have scored 10 points for ‘planning and making a journey’ because making a journey causes ‘overwhelming psychological distress’. It’s also important to note that children who get Higher Rate Mobility Disability Living Allowance (HRMDLA) will continue to qualify as before. In Scotland and Wales, thanks to our campaigning, eligibility criteria for Blue Badges already

About Blue Badges

The Blue Badge scheme enables those who have mobility issues, as a result of a disability or health condition, to park in specially allocated spaces.

Lewis and Lesley’s story Lesley’s 20-year-old son Lewis is autistic and has severe OCD. Although Lewis can walk, he’s unable to speak or understand instructions, has no sense of danger, and can’t plan or follow a journey. Lesley said: “If we’re out, Lewis stops to touch everything on the way, whether it’s a tree, a leaf, a branch or a stick, and if a person comes past, he’ll touch their hair. If I try to stop him, he gets extremely agitated and hits me. And unless I hold on to him tightly, he will run into the road. “In addition to his autism, Lewis has now been diagnosed

as epileptic and currently has seizures on a regular basis. This has caused us more concerns when we are out in the community because he now drops to the floor

without warning and fits. We did have a Blue Badge, but we lost it in 2017 after the criteria changed. Someone decided that if you could walk, you were no longer eligible. “Well, I would really like that person to come to my home and take my son out, and just see how difficult it is to leave the house without putting his life in danger every time he steps out of the door. “A Blue Badge would enable us to keep Lewis safe, and to do some of the day-to-day things that other families take for granted. It means less stress and exhaustion, and an improved quality of life.”

Autumn 2019 19

Advice

Noah and Hayley’s story Hayley’s five-year-old son Noah is autistic. She applied for a Blue Badge, but was refused. Hayley said: “Noah is oblivious to danger, which can make even short walks from the car really difficult. He will often try to run straight ahead, regardless of whether there’s a busy road in front of him. It’s a constant worry. “Noah also has a high level of anxiety and is very resistant to change. If something unexpected happens when we’re out, like us being forced to take a different route to town, he can get very upset and lose all control, and sometimes be unable to move. “At that point, it would be safer for us to get him back to the car as quickly as possible. It

takes into account some of the barriers autistic people can face. We urge Northern Ireland to follow suit and replicate these changes. Though it is a national scheme, Blue Badges are actually issued by local authorities (councils), or in Northern Ireland by Transport NI. It is the local authority that also decides who is entitled to a Blue Badge.

Read more at www.autism. org.uk/driving

20 Your Autism

is impossible for me to carry Noah as he is five now, and I also have his three-year-old sister – who rides in a buggy – to consider. “There are places we have to avoid during school holidays and at weekends, like busy parks, where there is a high demand for parking and a long walk to the entrance.

These changes will make a huge difference to thousands of people with nonvisible disabilities, so that they can enjoy the freedoms that many of us take for granted Nusrat Ghani MP, Accessibility Minister

“A Blue Badge would transform our lives. Parking closer to our destination would make our journeys so much safer, and would mean we can leave quickly if Noah does become overwhelmed. We’d be able to go out and about so much more, and ultimately have a better quality of life.”

Applying for a Blue Badge

Complete an application form from your local authority at: www.gov.uk/apply-blue-badge (England and Wales) www.mygov.scot/apply-bluebadge (Scotland) www.nidirect.gov.uk/articles/ apply-or-renew-blue-badge (Northern Ireland). If you’d prefer to apply on paper, contact your local council. You can apply for a Blue Badge on behalf of a person aged two years or over. If you’re applying for your child, you must show that they will be the main beneficiary.

Opinion

Hermione Cameron, Content Assistant at our charity, poet and autistic woman, weighs up the pros and cons of living with an invisible disability

I used to pride myself on my ability to fit in – my ability to seem ‘normal’, just about. I always felt I was hanging onto normality by a thread. If I made one small mistake, my carefully constructed mask would slip to reveal the ‘freak’ underneath. In many ways, I am normal. In many ways, I am incredibly fortunate and privileged. On the surface, as I was once told by a school friend, my life is perfect – and I can understand why they thought that. But I am also autistic. I’m still not used to saying those words – as though I am not quite autistic enough to own the term. I was diagnosed with Asperger syndrome (as it was then called) at the age of four. I did not exhibit the typical symptoms of autism and I excelled at reading and writing – perhaps helped by 22 Your Autism

Photo: istock.com/ Des Green

“But you seem so normal” my parents, who encouraged reading. I did have sensory issues and a complete inability to control my emotions, which would result in me crying pretty much every day. I remember feeling so anxious in school that I was unable to answer my name during registration, replying with a grunt, rather than the expected, “Yes Mrs…”. I was often frightened of other children, and dealt with those fears by retreating into my own imaginative worlds.

There’s a gap in understanding how autism presents itself in different people

Opinion

As I grew older, my autistic symptoms became less pronounced. I have what you might call an ‘invisible disability’. I can’t deny there are major advantages to that. Everyday tasks do not come naturally to me, but I do not face the same struggle as an autistic person with more complex needs. I also do not experience the same discrimination as somebody with an obvious disability. I am perhaps more able than others to express my feelings of anger, depression and anxiety, and so receive support for them.

The world of the ‘normals’

I live just like any other person in their 20s, using my invisibility cloak to infiltrate the world of the ‘normals’. Now that I am open about being an autistic person, I use my experience

to try to educate people on the topic. I can show them a different side of autism – one that’s a bit different from the usual (and almost always male, straight and white) autistic stereotypes on TV. I can direct them to other examples of people in my life who present a more varied picture of autism. However, there is always a part of me that feels I am complaining over nothing. After all, there are people in a worse position than me, so why don’t I just get on with it? From my experience, being a woman adds to the invisibility. Even in the most liberal of places, I feel that society expects women to be sociable, polite, and not too weird. I sometimes wonder if I would feel more permitted to let my weirdness run wild, to become more visible, if I were a man. Being invisible sometimes means those around you do not notice when you are really struggling. I’ve often failed to recognise the severity of my mental health issues because I seemed to be ‘coping so well’. When discussing autism, it can be difficult not to get drowned out by a flood of well-meaning, yet ignorant, responses: “But you seem so normal. I never would have known”; “You should see it as a gift”; or the dreaded: “Aren’t we all on the spectrum?” It can also be hard when you are self-aware enough to know that you are different. Of course, I know difference is not a bad thing, but it is still not easy to break free from negative past experiences. Although autism awareness is growing, there is still a gap in understanding when it comes to the spectrum, and recognising how autism presents itself in different people. By opening up the conversation, I hope we can work towards a society where neurodiversity is visible and valued.

Have you had similar experiences to Hermione? Let us know at YourAutismMag@nas.org.uk Read more at www.autism.org.uk/gender

Autumn 2019 23

Real life

“Gaming has helped me tremendously” QueenE (Emily Krumlinde) is an autistic streamer on Twitch, an online live broadcasting platform. Her channel has been viewed more than four million times. She tells Florence Leslie about her autism diagnosis, what it’s like playing games as a full-time job, and why she thinks so many autistic people enjoy gaming When and how did you get into gaming? I started playing games when I was really young. Playing on the PlayStation One was something our whole family would do together. I went straight from college into a foundation year at university as I wanted work in games development but, halfway through, I realised I liked playing games more than I liked making them. So, I dropped out and got another job. I started streaming the strategy game, StarCraft, as a hobby because I was eager to get better at it. A lot of people joined the stream to share their knowledge, and I eventually represented Sweden in a world championship in StarCraft 2, which is one of my proudest achievements. I’ve branched out into playing other games now, but I literally built my career from wanting to get better at a game and getting to know the people who played it.

What do you enjoy most about it?

Some people think that playing games is isolating but, when I’m playing a game, I completely focus on one thing, which helps when I’m feeling anxious. Even if I’m not good at socialising traditionally – like making small talk – I can still be really good at a game, and 24 Your Autism

that is equally acceptable in the gaming world. I even find small talk easier when playing games because I can talk about a shared interest. I used to find making friends difficult as, growing up, I was very shy, but I now hang out with my friends in online games, so gaming has helped me tremendously. I also love playing games because I’m extremely competitive!

When were you diagnosed as autistic? I became very depressed for the first time when I was 15, but I wasn’t diagnosed as autistic until I requested an evaluation at 18. I’ve heard that going undiagnosed for a long time is really common for autistic women, who often ‘mask’ their challenges to fit in and are encouraged not to make a fuss. This can

Real life

When you’re playing a game, nobody knows that you’re different, so people will not treat you any differently

cause mental health problems in women and girls, because they don’t get the right support. But I actually found the process of getting diagnosed myself really fun. The puzzles were exciting to do and I was relieved when I got the diagnosis. I’m sure that people who are diagnosed later than average can relate to the feeling that you work differently to other people. For example, I would get stressed really easily and be unable to explain why. My diagnosis made life a little bit easier because I could access the support to help me finally understand my reactions to things.

What is being autistic like for you? When I lived in Stockholm, commuting on public transport was quite an experience,

because I get easily overloaded when there are lots of people and noise, and unexpected things happen. I couldn’t work efficiently before I was a streamer because I was so stressed. When I came home from work, I would be knocked out, sleeping from the exhaustion of sensory overload. For a while, I was a tattoo artist apprentice, which introduced me to the idea of being my own boss. For the first time, I was more in control of my own schedule, so I could avoid rush hour.

Why do you think so many autistic people like gaming?

Gaming is just so accessible – you can play on mobile, PC or a console. For some autistic people, gaming is also the only social interaction they get with their peers. Autistic people who struggle with social anxiety can catch up with people and make new friends from the comfort of their own homes. When you’re playing a game, nobody knows that you’re different, so people will not treat you any differently. A lot of gaming content, especially online role-playing games, also happens around a timer, so you might do Autumn 2019 25

Real life

It’s also important to remember that streaming is a very volatile industry. Some months you can make very little money, so if you do have a good month, save your money, because you don’t know what will happen two months down the line. When I first started streaming as a job, I worked 16-hour days because there was so much to do to promote my channel online and get people watching. Even if streaming doesn’t turn into a job, it can be a really rewarding hobby, as autistic people who have special interests enjoy hearing endless talk about the thing they’re interested in.

something at the same time every day with the people you play with, which autistic people can build into their daily routine to socialise or relax.

What do you like to do in your spare time besides gaming?

Books and games are my two biggest passions because you can lose yourself in whatever universe you’re in. They’re like escaping.

How can other autistic people get into competitive gaming and make it their job?

Just go for it! The worst thing that can happen is that you fail, and then you will just have to try something different. People stream games, make-up tutorials, programming, singing, playing piano, everything! So build a streaming channel around what you’re really passionate about, as people will be interested as long as you are interested. If you are only doing it for the money, people see through an act pretty quickly. 26 Your Autism

Find out more about QueenE at www.queene.tv Game with an aim and raise money to help some of the 700,000 autistic adults and children in the UK. Register at www.autism.org.uk/gaming to download our free online stream-a-thon fundraising pack.

Game with an aim! Help create a society that works for autistic people by doing something you love with a fundraising stream-a-thon. Or you could hold a good old fashioned board game night.

Download your free stream-a-thon or board game pack at www.autism.org.uk/gaming

How to…

Challenge a school exclusion Andy Cutting, who runs our School Exclusions Service, advises parents about the grounds to challenge a school exclusion For an autistic pupil, school exclusion is unlikely to change or improve their behaviour, because it is often a direct consequence of their autism and unmet needs. The child may be struggling with the social and sensory world of school and feel isolated. A letter from the headteacher telling a parent their child is excluded can feel like an official confirmation: “You are not welcome at our school.” This can rapidly lead to a loss of self-confidence and motivation, and an increase in anxiety and depression – in some cases, resulting in long-term mental health issues. Parents who feel that their child’s exclusion is unfair have the right to challenge the decision. The law and processes around how parents can appeal against a decision to exclude their child vary across the four nations of the UK. In England, they make representations to the school governing board first, and then make a claim for disability discrimination to the First-tier Tribunal. In other nations, it will be slightly different. More information can be found at www.autism.org.uk/exclusion and by contacting our School Exclusion Service. 28 Your Autism

Grounds to challenge an exclusion

The decision to exclude a pupil must be lawful, rational, reasonable, fair and proportionate. Some parents might argue that the exclusion of their child is unjustified for the following reasons:

A child with special educational needs is vulnerable to the impacts of exclusion, particularly in terms

of their mental health.

The child didn’t do what they were accused of.

The headteacher should be convinced that it is more likely than not that the child did what was alleged.

As distressed behaviour can be an indication of unmet needs, there are proactive steps that the school could have taken to avoid exclusion, but did not. Behaviour is a form of communication and no child wants to be unhappy or anxious. They are not naughty; they are often feeling lost, confused or simply cannot cope. Focusing on and disciplining the behaviour – rather than

looking beneath it – is ultimately missing the point and adversely affects the child’s education and wellbeing.

The exclusion is disproportionate. For

example, a five-day exclusion for an incident in which no-one was hurt could be considered excessive.

The child’s version of events was not taken in to account. Where practical, the

headteacher should give the pupil an opportunity to give an account of an incident before taking the decision to exclude.

The school didn’t follow the correct procedures.

This refers to the guidance and legislation that governs the exclusion of pupils from schools.

How to…

● Children with special educational needs make up almost half of both permanent and fixed term exclusions. Source: The Government’s Timpson Review of School Exclusion, May 2019.

Photo: istock.com/ Supersizer

● Children on the autism spectrum are three times more likely to be excluded from school than children without special educational needs.

There were contributing factors that were not taken into account, such as bereavement, bullying, or other triggers to the behaviour.

The exclusion may amount to disability discrimination.

Parents should try to show that their child’s behaviour was a direct consequence of their autism or triggered by difficulties they face that are linked to their autism. There may also have been steps that the school could have taken that would have avoided the incident. Our charity helped bring about a recent tribunal ruling that means schools and colleges in England and Wales must make sure they have made appropriate reasonable adjustments for autistic students aged under 18 before they can exclude them.

The Equality Act 2010 in England, Wales and Scotland, and the Disability Discrimination Act 1995 in Northern Ireland, legally protect disabled pupils from discrimination in education. Parents can make a claim: ● in England: to the First-tier Tribunal for Special Educational Needs and Disability (SEND) ● in Northern Ireland: to the Special Educational Needs and Disability Tribunal (SENDIST) ● in Scotland: to the First-tier Tribunal for Scotland Health and

● Our charity is tackling the issue of too many autistic children being excluded. We made a very detailed submission to the Timpson Review of School Exclusion. This report has made 30 recommendations on how exclusions can be reduced and better managed. The Autism Education Trust (AET) has also trained more than 100,000 education professionals in understanding autism.

Education Chamber (Additional Support Needs) ● in Wales: to the Special Educational Needs Tribunal for Wales (SENTW). Claims of disability discrimination should be made no later than six months after the incident occurred.

More information can be found at www.autism.org. uk/exclusion and by contacting our School Exclusion Service in England (0808 800 4002) and Education Rights Services in Northern Ireland, Scotland and Wales (0808 800 4102).

Autumn 2019 29

Readers to the rescue!

Post your problems or answers on Facebook at National Autistic Society, email YourAutismMag@nas.org.uk, or write to: Your Autism, National Autistic Society, 393 City Road, London EC1V 1NG

Do you have a problem our readers can solve? Get in touch and benefit from the experience of our other members

How do autistic people in full-time employment manage their anxiety, in work and out? What reasonable adjustments have helped, and are there organisations that assist via Access to Work? Erica

I suppose I am lucky in that I didn’t know I was autistic until recently, so I’ve actually spent most of the past 30 years just having to cope with my anxiety and stress. I have had the occasional meltdown at work, but have generally managed to appear ‘normal’ to my colleagues for most of the time. My current colleagues know about my autism so are supportive when it comes to me having to cope with last-minute travel plans, airports and foreign cities. I think the secret these days is to let

Help me next!

How do you get your autistic children to brush their teeth? My daughter is really struggling and I’m running out of ideas to try to get her to brush her teeth. Anonymous, via our online community 30 Your Autism

iStock .com / kupicoo

For expert advice Managing anxiety is greatly and information on helped when you make the any autism-related effort (and it is sometimes a issues, call our big effort) to look after yourself properly Autism Helpline on with good food, regular bedtimes and a 0808 800 4104 walk every day. If you can get these things right, you will be more able to think things through sensibly. It is a vicious circle though – anxiety makes it harder to look after yourself, and not looking after yourself upsets your body chemistry more. Sometimes you just have to ask for help with it all. Ruth

people know what your ‘trigger’ points are so they can provide help when it is needed, or to just ignore the occasional outburst. Mike Ruth wins a copy of A Practical Guide to Happiness in Adults on the Autism Spectrum by Victoria Honeybourne.

● Find more information on our website at www.autism.org.uk/employment

Send us your solutions for a chance to win a copy of Simple Autism Strategies for Home and School by Sarah Cobbe.

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.

Advice

Student support Starting university or college this autumn and want some extra support? Mentors Danny and Aysha explain how they help autistic students Danny

I’m on the autism spectrum and received support throughout my whole education. I know how much that support helped me; without it, I wouldn’t be where I am today. I saw the job to work in universities with autistic people and, as an autistic person who went through university, I thought 32 Your Autism

my experiences could help others. Since September, I’ve helped 10 students at different London universities. They are matched to me by university location and on my skills and knowledge. For example, I have a degree in TV production from Ravensbourne and have gone back there to help students studying similar degrees.

The support I try to give is to make sure all aspects of university life are comfortable for students, so they can focus on work and try to improve. Recently, I’ve helped students with revision plans and ways to find accommodation, as well as job opportunities after graduating. It could also be something such as helping

Advice

Students thank you for ‘opening the doors to a future they never even dreamt they could have’ Danny

students budget for the week using online shopping tools – or even finding recipes for them to be able to cook independently at home. We try to build skills and support for autistic students so they can do things independently, and feel confident doing them. We monitor this with an Individual Learning Plan, in which the student sets targets to try to reach by the end of each term. They can ask to carry on with you for their support for the next university year – and for their whole university journey, if needed.

Aysha

I work with 20 students at De Montfort University, Leicester. I guide them to be the best version of themselves, to enhance the skills they already have and to be open to gaining new ones. Each student has their needs, set out in their Individual Learning Plan. As well as working on areas where they lack confidence – often communication – I help to prepare them for the ‘real world’, enabling them to break down barriers and to shine in the ways that make them brilliant as individuals.

Aysha

For instance, if a student struggles with social interaction, I help them to develop skills in a way that feels manageable to them. A lot of my students enjoy the gaming society, where they meet each week to play a certain game and have a tournament. University societies allow them to enjoy themselves and learn varied ways to communicate in a social setting. Joining societies has done wonders for my students. Many struggle with talking on the phone. I guide them with what to say when first calling

someone or answering a call. I use scenarios, and the most common are ringing the bank or booking a doctor’s appointment. It’s the best feeling when students graduate and you see how much they have changed. They thank you for opening the doors to a future they never even dreamt they could have. It is as though you have taught them how to spread their wings and fly. If you were to ask my students to think of a word linked to me, it would be ‘positivity’. I preach this to them like a religion.

Do you want a student mentor? ● Our Student Support Service provides a support network to help autistic students successfully manage their workload, as well as the many social and emotional challenges of university life. ● We offer a range of support options, including one-to-one specialist mentoring, one-to-one specialist study skills support, and study assistants. To fund this support, students apply for Disabled Students’ Allowance via Student Finance. Then an individual needs assessment indicates how many hours of support each student receives. For more information, visit www.autism.org.uk/studentsupport

Autumn 2019 33

iStock .com / Supersizer

Advice

When your child is showing distressed or challenging behaviour, it can feel overwhelming. Helpline Adviser Kirsty explains why this behaviour may be happening, and gives tips to help you manage it

Helping with distress Distressed or challenging behaviour can be displayed in a number of ways. It will vary between individuals and situations, and the reasons for the behaviour will differ, too. This behaviour may be expressed verbally (using swear words or shouting); as selfinjurious behaviour (hitting their own head); pica (eating or mouthing non-edible items); smearing (touching their faeces and smudging against the wall); or as physically challenging behaviour (hitting, spitting, biting or property destruction).

Why does it happen?

Frequently, distressed or challenging behaviour continues because it is fulfilling a purpose. Often, it is a way of someone on the spectrum communicating something; this may be particularly true for those who find it challenging to communicate 36 Your Autism

or interact with others. It is important to find out what is causing the distressed or challenging behaviour so you know how best to help. For example, this behaviour may be occurring because your child: ● has been denied something they want ● has finished an enjoyable activity ● has been told to do something they do not want to do ● is in an environment that is overwhelming their senses ● does not understand what is expected of them ● feels they are not being understood ● has had their routine disrupted ● is bored and likes the reaction their behaviour gets ● is in pain.

Advice

If you are not sure why the behaviour Meltdowns is occurring, or it seems to come out of When your child is displaying a lot of nowhere, you may find it useful to complete distressed or challenging behaviour a behaviour diary. Write down an ‘ABC at one time, they may be having a chart’, where A represents antecedent meltdown. This is an intense response – what happened before the behaviour – to overwhelming situations where an B behaviour, and C consequence. In the individual may temporarily lose behavioural antecedent section, record everything that control. When a person is overwhelmed, happened directly before the behaviour, and their condition means it is difficult including the time of day, to communicate why they environment and situation. In are feeling frustrated, it is the behaviour section, detail understandable that the Once a meltdown what the behaviour looked result is a meltdown. has begun, it may like – for example, hitting. Some autistic people may be very difficult In the consequence section, show signs of distress before record what happened having a meltdown. Trigger to stop, and any immediately after signs may include pacing, intervention may the behaviour. seeking reassurance through make it worse After a few entries, it may repetitive questioning, rocking be possible to see if any or becoming very still. At this triggers or patterns emerge. stage, there may still be a Identifying the triggers of distressed or chance of preventing a meltdown. Once a challenging behaviour will help you decide meltdown has begun, however, it may be which behaviour strategies to put in place. very difficult to stop, and any intervention on your part may make the situation worse.

, 18:05 Wednesday, 15/05/2019 table A My son was sitting at the on his just before dinner, playing s sister iPad. The radio was on. Hi to son was singing. I asked my turn off his iPad. B My son hit his head with ick his palm five times in qu at on his sp succession and then he her in the sister’s cheek, and kicked tensity. right shin with medium in quiet C I redirected my son to a sat on He m. space in the living roo He then the sofa for two minutes. one used his fidget spinner for did not he minute. After this time, asked him spit or kick, and then we to come back to the table.

How can I help?

Once a meltdown has begun, try to make the immediate environment as safe as possible and remove any potential triggers. Calmly ask your child if they are OK, but bear in mind they may need more time to respond than expected. Offer them the opportunity to use calming strategies that have worked for them in the past, such as a stress ball, fidget toy or calming music. It may be too overwhelming to ask an autistic person to try a new calming strategy when a meltdown has already started. If you are in public, try to create a quiet, safe space as best you can by asking people to move along and not to stare. It may be worthwhile having an alert card to present to the public if this situation occurs. Proactive strategies for smaller instances of distressed or challenging behaviour – before a meltdown occurs – will need to be adapted depending on the cause of the behaviour. Take a look at our ideas on the next page. Autumn 2019 37

Calling all Thomas fans! Join us for an autism-friendly day out on Sunday 22 September 2019 in the grounds of Drayton Manor, home of Thomas Land. And, if you complete our 3km sponsored walk and reach the fundraising target, youâ€™ll get a free ticket to Thomas Land.

Advice

Things to try Visual supports

Use a visual timetable to show your child’s routine. You can break this down further depending on your child’s understanding, and use a ‘now and next’ board.

When to use

To help develop a structured routine; to aid communication; to support understanding of events or situations; to help your child understand what is expected of them.

Top tip

Personalise visual supports. For example, take pictures of your child’s environment and items they enjoy – this will help them identify what is on the visual support with their life.

A reward

Set up a reward system where your child can gain tokens when they show appropriate behaviours. Use something they are really motivated by for the final reward and once they gain, for example, 10 tokens, they can cash them in for their reward.

When to use

When ending an enjoyable activity; telling your child to do something they do not want to do; or when your child does not show distressed or challenging behaviour in situations that they find difficult.

Top tip

Rewards are useful when trying to build up your child’s tolerance to demands.

to cope with distressed or challenging behaviour A timer

Use a timer to help them understand how much time they have left doing an activity.

When to use

When ending an activity.

Top tip

If appropriate, let them control the time they have left on an activity. This can help them feel they are being listened to and reduce distressed behaviour.

Remain neutral

Respond in a calm, monotonous voice, without showing emotion, and then redirect your child to a more appropriate response or activity that can gain them your attention in a positive way.

For example

If your child is spitting in your face, respond by very neutrally saying “no spitting”. Immediately show them how to get your attention positively – such as by tapping you on the arm – and then give lots of positive attention and praise for doing this appropriately.

Top tip

It is useful to know that any attention, negative or positive, is still attention.

Adapting your communication style

Be clear and concise with your child. For those who find using verbal language difficult, explore alternative means of communication. This might include sign language/Makaton, or visual supports, such as PECS or communication apps.

When to use

When your child does not know what is expected of them or when they feel misunderstood.

Top tip

Make Social Stories™ to help your child understand appropriate behaviour in various situations.

Catering for sensory sensitivities

It may be worth altering the environment to help your child manage their sensory sensitivities, or altering your child’s experience with the environment.

For example

Turn down radio or TV volumes, shut doors or windows, or soundproof with carpets. If you can’t control the environment, use earplugs, noise-cancelling headphones, or calming music.

Find out when to get extra help from professionals, and who can help, at www.autism.org.uk/digitalyam Read more advice at www.autism.org.uk/behaviour Order your free autism alert card at www.autism.org. uk/autism-alert-cards Let us know if these strategies help you at YourAutismMag@nas.org.uk Autumn 2019 39

“I’m organising a comedy show to help autistic people like my amazing little bro, Alex.” Matt Richardson, comedian and National Autistic Society Ambassador

The Matt and Co Comedy Show is back 18 November, Union Chapel, London. Get your tickets today at www.autism.org.uk/comedy

Meet the team

“I love reading the postbag” The Spectrum is our magazine written for and by autistic people. Its editor, The Goth, shares his memories of working for the magazine, and his wide array of interests, from philosophy to immunology How long have you been editing The Spectrum? I started in 2005 as the producer, laying out the magazine, and took over the editorial role in 2010. What inspired you to get involved? I’d been volunteering for the National Autistic Society for two years. A friend who worked at the charity recommended me for the post.

What’s your connection to autism? I’m autistic. My parents were also autistic, as were my uncle and his daughter. What’s your favourite part of editing? I love reading the postbag. There’s a huge sense of disappointment when I get something great that is unprintable – one psychology lecturer sent me a 120-page article, which he hoped I could serialise. The best was one giving tips for avoiding bear attacks, sent in from someone who lived rough in North America. Any interests outside of work? All sorts of things: languages and linguistics; philosophy; physics; history; wildlife; choir; beer and brewing; and immunology. I don’t know where to start or when to stop, which pretty much sums up my conversational style. Read the latest issue of The Spectrum and find out how to submit articles at www. autism.org.uk/thespectrum

Autumn 2019 41

Notebook

Everything you need to read, do or see

Camouflage

AUTHOR: Dr Sarah Bargiela PUBLISHER: Jessica Kingsley Publishers PRICE: £11.39 VERDICT: Highly relatable and easy to read This book includes the experiences of three women on the autism spectrum with a late diagnosis. I found this book really easy to read and understand; it contains drawings that help to explain autism in a simple, but effective, way. The language is straightforward and not academic, so everyone can understand the subject. I enjoyed reading about the experiences of the three women; I could personally relate to their experiences, and it’s likely to resonate with others who read the book. I would recommend this book to anyone looking for information about autism. Patricia Higgins, Your Autism magazine reader

“That’s not right!” My life living with Asperger’s AUTHOR: Alex Manners PUBLISHER: Cavalcade Books PRICE: £12.99 VERDICT: Enjoyable insight into being autistic at school This book is about how having Asperger’s negatively affected Alex’s time at school.

Become a reviewer

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

It also suggests some ways in which he thinks the education system could be improved to help others with Asperger’s. I enjoyed reading this book and could relate to many of the problems faced by Alex from my own time at school. I would recommend this book to those with Asperger’s and to anyone involved in their education, especially parents and teachers. It gives a good insight into many of the problems that somebody with Asperger’s might have during their time at school, and how some of these problems could be lessened. Ed Stevens, Your Autism magazine reader

Giveaways

We have two copies of “That’s Not Right!” My life living with Asperger’s, by Alex Manners, to give away to members. Alex appeared on the Channel 4 show The Undateables, and has given numerous TV and radio interviews about his Asperger syndrome. He was diagnosed aged 10 and says it brings out his quirky and unique personality. Find out more at www.thealexmanners.com. To stand a chance of winning a book, send your name by email to YourAutismMag@ nas.org.uk by 30 September, quoting ‘Alex Manners’. The winners will be announced in the next issue. The winners of last issue’s competition to win a copy of Odd Girl Out by Laura James are Guy Warburton and Jenny King. Well done!

Autumn 2019 43

“A

The

ThomasCentre

ial

Westfield • Covenham St. Bartholomew • Louth • Lincs • LN11 0PB www.thethomascentre.co.uk t: 01507 363463 e: enquiries@thethomascentre.co.uk

For families like ours, for carers like you. For those who are affected by autism, epilepsy or other special needs, we have built The Thomas Centre. Eleven years on, we now offer even more facilities. We provide 2, 3 and 4 bedroomed, luxury properties, set in a stunning location, near the Lincolnshire coastline.

8 Luxury self catering holiday properties. 25 acres and a 1/3 mile from the nearest road. Complete privacy.

A large indoor heated swimming pool for private use during your holiday Don’t forget Josie’s Corner, the go kart track, the woods, Bill’s Play Barn and so much more.....All on a private estate, an oasis far from the madding crowds, in a non-judgemental environment.

There is just one rule at The Thomas Centre: no need to apologise, no need to explain.

opl

e!”

Notebook

Yoga for children and young people with autism AUTHOR: Michael Chissick PUBLISHER: Jessica Kingsley Publishers PRICE: £14.99 VERDICT: Great resource for starting up a yoga group

Overall, I feel this book is a great starting point, mainly for professionals wanting to run a yoga-based group. Thought and experience have clearly gone into this book, in terms of trying to engage children with a range of abilities. This is

reflected throughout, with consideration around making exercises fun, using songs and games, and employing visual timetables to reinforce learning and reduce possible anxieties. I found the example lesson plans, with advice on sequencing and timings – and the written descriptions of how to execute the various exercises – particularly useful. Sadly, supporting videos and some additional materials have to be bought separately from the author, and are not included in the price of the book. Dr Patrick Welsh, clinical psychologist

Our six favourite… items to take on a plane, chosen

by Emma Saysell and her son Zach

Proloquo2go on tablet

The most important thing for us all is the ability to communicate our needs, which makes the tablet with communication app proloquo2go top of the list. The app can be used on up to six devices, so it can even be loaded onto your phone, just in case the iPad gets lost or stops working. iTunes, £249

iPad and case

Games and music are vital to Zach, great for distraction, and the iPad is a very familiar object in an unfamiliar environment.

iPads are great, but very easy to damage. To make sure Zach’s survives the flight, we use a very tough case from Inclusive Technology. www.inclusive. co.uk/gonowrugged-ipadcase-p7103, £65-£75

Picture timetable

The older Zach has got, the more he likes to know where, who and when. We

use Pyramid’s compact travelling/schedule board. We use photographs on the schedule and remove them as each part of the journey is completed. pecs-united kingdom.com, £6

Snacks

They have to be the right variety, so we take our own.

Twiddlers Zach likes

to have something to twiddle and tie in knots. It is a calmer and a self-regulator. He uses Scoubidou strings. Younger children would need to be supervised when twiddling with these. www.homecrafts.co.uk/ scoubidou-braiding-cord, £3.30

A smiley face and calm demeanour!

Zach reads people’s faces and body language. If we are calm and happy (or appear so!) he is, too.

Read more about Emma and Zach at www.spectrumofmisconception.com Do you have an idea for our six favourites section? Email it to YourAutismMag@nas.org.uk

Autumn 2019 45

Snapshot

I’m an… award-winning woodturner It’s been an incredible year for 15-year-old woodworker and photographer Nathanael Griffiths, who was recently awarded the British Young Woodturner of the Year prize. His work was also exhibited at the prestigious Oxo Gallery in London as part of the ‘Celebrating British Craft’ exhibition

Nathanael is a pupil at West Kirby Specialist School and College in the Wirral. He first discovered a knack for woodwork through Design and Technology (DT) lessons. Encouraged by staff, family and YouTube tutorials, he was able to develop his craft outside of school and is now selling his work at local fairs. His DT teacher, Chris Saunders, said: “It’s amazing. Two years ago he didn’t know how to use any tools. I showed him how to use the lathe, and this is where he’s ended up. So proud.” Nathanael, who is autistic, goes to the West Kirby School’s ‘Zone’. The Zone offers an alternative curriculum to autistic pupils, helping them develop useful life skills. Strategies taught include the energy accounting technique, a method developed by autistic speaker Maja Toudal, which helps people on the spectrum to manage their energy levels.

Kind and supportive Nathanael said: “All the staff at my school have been really kind and supportive.” He also discussed the challenges he faces as a young man on the autism spectrum, explaining that sometimes it’s hard to talk to people and think what to say. 46 Your Autism

Nathanael’s parents said: “A different approach to his education – ‘thinking outside the box’, using his woodturning and photography special interests to engage him in school – has enabled Nathanael’s progress and huge personal achievement.” They added: “Nathanael is in his element when he is chatting to staff at school about his projects!” This outside-the-box thinking is evident in Nathanael’s work. From crafted bowls and chopping boards to smartphone tablet speakers, Nathanael’s creations are varied and innovative. You can admire his handiwork on his Instagram page: @griffithswoodworking Congratulations to Nathanael on his achievement. We look forward to seeing what the future holds for him.

Are you doing something amazing that you’d like to tell readers about? Let us know by emailing YourAutismMag@nas.org.uk