Your Autism magazine - Summer 2020

YOUR Summer 2020

Making music

Pianist Rachel Starritt’s story

Homeschool your child Teaching tips to help you both

Autism and art

Creativity to aid expression

Plus

Coronavirus latest, managing anxiety and advice for carers

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YOUR

Creating art

Summer 2020 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk

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Contributors Hermione Cameron, Tracey Lattimore, Georgina Maric 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 Summer Vol 54, No 2 National Autistic Society ISSN 2055-0413 The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism.

However, this does not imply our charity’s endorsement of any particular approach or product.

The inclusion of a website does not necessarily imply that our charity endorses or supports the group or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.

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Rachel hits the right note

Contents

12

Anna’s letter to Huw

16

What’s new?

04

Welfare deputyship

26

Homeschooling

08

Readers to the rescue

29

My diagnosis

11

Coping with anxiety

30

Rachel’s story

12

Moving on up

32

Letter to Huw

16

Meet the team

37

Interview

20

Notebook

39

Autism and art

22

I’m a... junior doctor

42

A roundup of the latest news

Teaching at home in lockdown

Katie’s experience

Pianist finds the right key

Anna writes to her son

Award-winner Lee Corless

The benefits of creating art

Michael Baron explains

How to handle haircuts

Tips for dealing with stress

Education transitions

Volunteer Sara Truman

Things to read, do and see

Harri’s frontline experience

speaking up for autistic people’s rights in this 04 national crisis

We will keep

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What’s new?

Get in touch!

Our roundup of the latest news and views

Coronavirus – a letter from our Chief Executive After a very different World Autism Awareness Week to the one we had planned, I would like to thank you for your continued and vital support of our charity. I also want to update you, as a fellow member of our charity, about some of the work we are doing to ensure supporters get the advice and information needed.

Like all charities, we have had to rapidly and widely adapt what we do and how we do it. An early priority, as the country moved towards lockdown, was answering urgent questions from autistic people and their families. The coronavirus hub on our website was established quickly to provide updates in a rapidly changing situation, as well as tips and stories about coping with the situation. If you’ve used the hub, I hope you are finding it useful.

Do let us know if there are other things you’d like to see there – email supportercare@nas.org.uk Our social care services and schools continue to support autistic adults and children, thanks to the dedicated work of hundreds of frontline staff. Safe and healthy care, support, and education are our first priorities. On top of this, I’ve been heartened to see staff coming up with imaginative ways to provide activities. These have included a drive-through ‘McDonald’s’ in a car park and a ‘pub’ in the garden of services in Wales.

Because we had to stop nonessential support and social groups, in line with guidelines about social contact, we’re trialling online groups run by our volunteer-led branches or by staff. Please contact your branch to see if they’re providing support online. We’ve had fantastic feedback so far, often from people who could never come to a face-to-face group.

We’ve also been pushing politicians to change some of the new laws and regulations so that they work better for autistic people.

You may have seen that Government has made some changes, such as saying that autistic people can exercise more than once a day if needed. We will keep speaking up for people’s rights so that, in the midst of this crisis, policy-makers remember what autistic people and their families need. I’m proud that our charity is continuing to do so much and has adapted so quickly to this unprecedented situation.

There are clearly some things that we cannot do at all, like push for a new and better Autism Strategy in England, or run face-to-face training and fundraising events. In some cases, this will mean we lose income, so we are furloughing staff where this doesn’t affect priority services and activities. I’m grateful to the staff who we have furloughed for recognising how important it is that we manage our finances carefully.

Working with a great team of staff and volunteers, I will continue to ensure that our charity responds effectively to this crisis, which makes our mission to create a society that works for autistic people and their families even more urgent.

We couldn’t do this without your support. Thank you.

Finally, and sorry to end on a sad note, but our Board of Trustees has taken the difficult decision to close our Anderson School in Essex. The school began with great ambition, but has struggled to achieve the consistent high standards that we expect, and that the students and their families deserve. You can find out more at www.autism.org.uk/ future-of-anderson-school With best wishes, Caroline Stevens, Chief Executive For advice and information, visit www.autism.org.uk/coronavirus

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World Autism Awareness Week 2020

Thank you to everyone who took part in World Autism Awareness Week.

Our amazing fundraisers took on our 7k for 700k event and Spectrum walks, adapting them to fit within the lockdown restrictions.

More than 5,000 teachers and parents downloaded our schools’ resources, supported by Axcis Education, and 3,000 people downloaded our workplace resources.

Channel 5’s Milkshake! aired a special episode of Daisy & Ollie to celebrate World Autism Awareness Day on 2 April.

They worked in partnership with our charity to create How can I make friends with Theo? introducing Theo, a young autistic boy to the programme, and guest-starring our ambassadors Paddy and Christine McGuinness. Catch up online at My5.tv.

Meanwhile, our volunteer Kelly Anne Barret created a fantastic crochet pattern (www.autism.org.uk/crochet) to make the Trummies – the characters used in our learning resources for primary schools. See our ‘thank you’ film at www.autism.org.uk/waaw

iStock .com / abdoudz

All rights reserved ©2020 Hoopla Animation Limited

News

The effect of coronavirus on membership The outbreak of coronavirus has caused a lot of uncertainty in the world right now and has meant we’ve had to change the way we work. As such, we wanted to advise you of some of the effects that this will have on our membership scheme: l At present, we are still able to send physical copies of Your Autism to your household, four times a year. We have further editions planned for September and November of this year. l We are still able to send renewal reminders related to your membership via post and email. l We are currently unable to send any postal letters to confirm the start, cancellation or amendment to a direct debit you may have set up to pay for your membership. We recommend that you contact your bank directly if you wish to amend an existing direct debit in any way.

We sincerely apologise for the inconvenience that this may cause you and we will of course do our best to keep you updated of any changes. If you have any queries, please email us at membership@ nas.org.uk but please be advised that our services are slower than normal at the moment.

Finally, we’d like to wish you well and thank you for your continued support during these challenging times.

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News

The Autism Show – new dates This year’s Autism Show has been postponed because of the coronavirus pandemic. The new dates are: 20-21 November 2020, Manchester; 4-5 December 2020, London; and 11-12 December 2020, Birmingham.

Tickets are available now and any tickets purchased for the original June dates will be valid for the rescheduled dates. You can find the full 2020 programme on the Autism Show website at www.autismshow.co.uk Members of our charity can receive a 20% discount off a standard adult ticket by quoting the code NASM20 when booking in advance.

The A Word returns The third season of The A Word began on 5 May and continues on BBC One. Two years have passed, and things have changed for the Hughes family. Joe is 10 and living in two places at once, processing the changes in his life through the filter of his autism. His parents, Alison and Paul, are divorced and living 100 miles apart. Alison’s brother, Eddie, lives with their dad, Maurice. Only Maurice is holding it together. Julie Hesmondhalgh (Broadchurch, Coronation Street), Sarah Gordy (Call The Midwife, Holby City) and David Gyasi (Troy: Fall of a City, Man in an Orange Shirt) have joined the cast for season three.

Our charity worked with the show’s writers, who aim to portray autism as accurately as possible.

Branch founder honoured Congratulations to Marion Redfern, a founder member of our Cheshire West and Chester Branch, who has been awarded a British Empire Medal (BEM) for services to autistic people and their families.

Marion’s son Jimmy is autistic and, for 25 years, she has worked tirelessly to make sure high-quality services have been created and maintained for him and others like him in Cheshire.

Fellow branch member Esther Fletcher said: “Our priority was always to persuade the local authority to develop supported living for autistic adults because one day we wouldn’t be here to care. Marion worked very hard to ensure this happened and worked with the local authority to achieve this. As a branch we are thrilled that she has been recognised for her lifetime work for autistic people and their families.”

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Homeschooling

Karen’s son learning at home

Life in lockdown

Karen Wright, home/flexi-schooling mum, writer and therapist, and Lead of Bridport ASD and Social Anxiety Group, reveals how her family is coping with homeschooling Homeschooling and feeling isolated are two aspects of life with which, as parents of a 15-year-old with Asperger’s, I thought we were familiar [Karen previously homeschooled her son in Years 5-6]. However, the speed at which the coronavirus lockdown occurred made me feel very anxious for our child and the other teenagers I work with in our local ASC Support Group. It meant we had little control over what was happening and, as we tried to prepare for change, it just kept on coming. The potential length of isolation and the impact on mental health was worrying.

There have been significant challenges. Our son seemed to freeze with the shock of what was happening. Meanwhile, thrown into Year 10 schooling, I panicked at times.

It’s hard to stay calm and focused when you are asked to teach GCSE engineering with no notice and no knowledge. We longed for a break at Easter. But, with our much-needed holiday cancelled and less routine to his day, our son became angry, shouty and slept erratically. He was hard to motivate towards any of the limited activities we could offer. We all felt low and sad, and fed up with

watching The Big Bang Theory non-stop.

Teachers were, of course, scrambling to get suitable materials out to students. They were anxious about our kids missing so much mainstream schooling during their GCSE year, but sending out assignments with short deadlines – and instructions to work really hard because they couldn’t afford to fall behind – were unhelpful at best. And it was hard to be patient, as materials were not necessarily differentiated or supported. My son has wide gaps in his learning and

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Homeschooling

needs reinforcement of ideas and a specific approach to keep him focused and able to learn.

Uncertain times

Teens have been thrown into situations in which they are unable to process or cope. They don’t know what will happen about their GCSEs, they are separated from extended family and support networks. Some are halfway along diagnostic pathways, or they might be just starting in therapy settings that have then been delayed or changed. Horse therapy [feeding, grooming and leading horses as therapy to promote connection and emotional growth] really doesn’t work on Zoom. Some teens have been in crisis, have had ongoing anxiety attacks, or they’ve withdrawn completely. Parents have been incredibly worried where they have children with co-morbid conditions, which make them more at risk.

At first, when schools and specialist settings were offering our child a continued place because of his Education, Health and Care plan, it felt like a lifeline. However, if we had taken this up, we may have put our vulnerable child and household at a greater risk of catching Covid-19.

Looking at the positives

What I was not prepared for during lockdown was my son’s resilience and ability to slip, almost seamlessly, back into homeschooling. In fact, this time, my husband and I feel that this represents the best of both worlds in terms of our son’s schooling. Now we are through the worst of the first weeks of adaptation, our son is able to work at his own pace, at home, without disruption. He is away from noisy classrooms and changes at school

that can cause sensory overload. He has more choice and independence over his learning, and we enjoy working together.

There has been a lifting of the pressure and exhaustion our son feels from being at school. Other parents also report a significant reduction in their children’s daily anxiety, and, for some, the relief of being away from bullies. He is smiley, and keen to work and achieve. He hasn’t had any meltdowns. Instead, we have had hugs and family time, such as playing Nerf wars in the

ur top

garden. Clearer work and guidance is coming from school, as well as daily support from his teaching assistant on Zoom. This is also how he has been able to continue his drumming lessons and therapy sessions. We have been able to continue with our support group online via FaceTime.

This is enabling teens and parents to continue to help one another.

For now, coronavirus has actually bought many positives into our lives.

We have reconnected as a family, and are spending happy times together without stress and burnout.

tip for o

c ooli

1. Prioritise your own self-care so that you can support your child calmly and not be overwhelmed. Have a separate space for yourself in the home, however small, where you can relax. Find time for your own interests and friends.

2. Make a supportive daily framework. Keep to an established routine if you can, with a timetable and visuals about what will happen and when, including rewards.

3. Build in plenty of tender loving care (TLC) – massage and reflexology help with connection and relaxation. Cuddle up for a read, or to watch a film or documentary, and spend time outdoors if you can.

4. Listen to what your child needs. It might be to take time out entirely and play games, draw, or spend time in nature when things are stressful. This is the ideal time to nurture any special interests that can give our kids focus, direction and possible future employment. Choose a course with them on FutureLearn, for example, (14+). Have fun with The Dad Lab (5+). Learn a language via Duolingo (10+).

5. You are not alone. Share ideas and materials with other parents.

There are many resources out there to help – for example, on BBC Bitesize, which now has daily content; printables such as the ones on www.twinkl.co.uk; free virtual tours of museums and galleries; and craft and sensory support ideas on Pinterest, The Imagination Tree (1+) or The Artful Parent (3+).

Use our resources at www.autism.org.uk/coronavirus Read more about Karen Wright at www.bridportchildrenswriter.com

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Autism online training With more than 50 years of learning from first-hand experience, no one has more practical knowledge of autism.

Available modules • • • • •

Understanding autism Autism, stress and anxiety Autism: supporting families Women and Girls And more.

Find out more:

www.autism.org.uk/training

The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)

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My diagnosis

“Suddenly, everything makes sense” Teacher Katie Wild was diagnosed with depression before finally receiving an autism diagnosis aged 31 Too many girls and women are slipping through the net and being misdiagnosed with mental illnesses they do not have, thanks to the struggles of being autistic and not knowing. It’s a sad and lonely world when you do not know where your place is, not to mention an exhausting one as you use all your physical and emotional energy trying to fit in.

This was my story. From the age of 18, I was diagnosed with depression and prescribed medication at a level that was increased so high, I’d go into withdrawal the same day if I missed a dose. I had numerous

Read more

Use our award-winning women and girls online training module at www.autism. org.uk/women-and-girls We explored diagnosis for women and girls in our Spring 2020 issue. Read it at www.autism.org.uk/digitalyam Want to share your diagnosis story here?

Email YourAutismMag@nas.org.uk

assessments with psychologists; therapy, counselling, ‘maybe this,’ ‘maybe that’. Not one professional suggested I could be on the autism spectrum. Why? Because I am female and ‘high functioning’.

I was never asked about why I struggled to make eye contact, why I always turned up to appointments with a rucksack on my back (because it made me feel safe), why I found it difficult to answer questions such as ‘how do you feel?’, why I threw myself down the stairs in a bid to feel something because I was sure I could not feel pain. No questions asked, just a higher dose of medication.

I began teaching young adults on the autism spectrum and it was here I learned about the differences in how autistic males and females present. This led me on my journey to diagnosis.

Suddenly, everything made sense, and I only wish I could have received a diagnosis earlier in life (although for a female, I suppose 31 is early), which is why I need to tell my story. As an autistic teacher, who works with autistic young people, my students have been my greatest teachers.

We need to raise more awareness of autistic women with lower support needs.

Let’s do it for the girls.

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Real life

Finding the right key Rachel Starritt is an award-winning and internationally touring pianist who is blind and has Asperger syndrome. Here, she tells her story

Music has always been an important part of my life, ever since I was born. My mum says that, as a baby, I always seemed to get comfort from music. I loved her singing to me. When I was about two, I had a toy keyboard that played nursery rhymes.

One day, mum heard a rhyme that wasn’t programmed into the toy and saw I was actually playing it myself. This was the beginning! Then my mum bought me a fullsized keyboard. Later, a student from the local school came to my house weekly to

I was the first blind student to study a music degree at the Royal Welsh College of Music & Drama teach me. When I was six, I started at the Forte School of Music in Cardiff, and then moved on to the Welsh College of Music & Drama’s Junior Department when I was nine. I passed grade eight piano aged 14, and A-level music at 15. I was the first blind student to study a music degree at the Royal Welsh College of Music & Drama.

My mother had suspected that I was autistic for a long time. Family and friends explained the traits away because of my blindness, but mum felt it was something more. I was diagnosed during my third year of my degree, and I’d had useful support from my schools up until that point.

Today, I live in a flat in Cardiff near the Royal Welsh College. I have a team of 12 Your Autism

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assistants who give me practical help with breakfast and travelling to college. They help me organise my schedule each week, and I have mentoring sessions to discuss strategies for problems and to talk through any worries. My piano teacher, Alison Bowring, has been with me throughout my time at college and has supported me academically and emotionally.

Feeling positive

The positives of being autistic are that I feel more curious about the world, and my emotions are, therefore, generally heightened.

I have lots of perseverance in areas I’m interested in. I treat everyone the same as I don’t really get hierarchy. So, if someone has something useful to say, I don’t distinguish between a top lecturer or a young child. I can take on board constructive criticism without taking offence, as I don’t get emotional about it – I see it as ‘black and white’.

But understanding what people mean is a challenge. I take things literally, and often people don’t say things directly. Also, I am only relying on their tone of voice for clues as I don’t have visual feedback. This can make me feel anxious.

If I don’t have an interest in the subject people are talking about, I tend to block out into my own world. I find it difficult to engage. I have difficulty with organisation skills and prioritising, so I need extra support.

Before my diagnosis, I found adapting to the world confusing, especially in communication. I didn’t understand why I didn’t think in the same way as others, and it caused distress at times. After the diagnosis, I understood the way I thought about things much better, and felt more confident socially. My family understand me much more now, too.

Playing piano

Since the piano is a universe of sound and colour at my fingertips, it helps to distance me from reality, especially when I’m focusing on practising and performing.

It takes me into a state of relaxation and

“Rachel thinks in a different way to others and it comes out in her music. She plays with emotion and passion as her music is an outlet for her communication with others” Rachel’s mum Andrea

freedom, stabilising my wellbeing. Playing helps when I feel stressed or anxious. The many tonal possibilities enable me to become transported and immersed in my repertoire.

I think music speaks louder than words because of the presence of melody and rhythm that I can cling to. When I play the piano, I am totally in my comfort zone.

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on my approach to music. It allows me to release my emotions in a harmless manner, as using words to express myself is not my inclination. I do lots of repetition in practice, but experiment using different emphasis, such as phrasing, attention to detail, focusing on sound, and physical sensation.

Going to Glastonbury

I was proud to be selected to play in a band made up of artists with disabilities, advertising TV coverage of the 2016 Paralympic Games. I was discovered on Google playing Beethoven, and the organisers asked if I would audition. I sent in a video of myself and I was thrilled to be chosen. When the advert launched, I couldn’t believe it received more than a million views on social media! It was a fantastic experience and I loved meeting all the other musicians.

Last year, I played keyboard at Glastonbury with the Love Unlimited Synth Orchestra. It was very uplifting. I have more freedom for expression on a synthesizer as there are no hammers and strings to contend with, so you can let yourself go.

uic

r

u

tio

Favourite piece of music?

Beethoven piano concerto No.3 Favourite type of music to play?

Everything…

Who’s your favourite musician?

Alicia de Larrocha, a Spanish pianist – she is my inspiration for sound What’s your favourite song?

All the things you are by Jerome Kern Best experience of your life?

Travelling to Barcelona for Erasmus Proudest achievement?

When I received a First in my undergraduate recital The best way to relax?

Definitely listening to music and piano practice Tip for other musicians?

Follow your passion and see where it ends up

Future plans

I would love to perform more overseas,

Rachel in Channel 4’s advert for the Paralympic Games

especially in Spain where I studied as part of my degree. I’m now studying my Master’s degree in music and I’m splitting the second year over two years so I can focus on getting more performance experience and learning composition. I want to do more jazz gigs and am keen to further my improvisation skills. I would love to do more concertos and generally perform at every opportunity.

The more versatile I am, the more employable I’ll become.

My message would be that autism can be a blessing. There is no reason to be afraid.

If you have a passion, enjoy that one thing and see where it leads.

Watch Rachel play at www.rachelstarritt.com

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A letter to Huw Anna Cosslett writes a letter to her autistic son Huw about their time together before he went into full-time care – and shares her tips for other carers

Dear Huw, If you could understand this letter, I would be so happy, but you probably won’t, because a lot of what is said or written is a mystery to you and you can only speak a few short sentences. You hit me once when you were about three years old, when I told a friend that you didn’t understand something – and

this should have been a sign to me that actually you did understand and I needed to act fast before you lost that ability. Later, you tried your hardest to say a single word. You spent all day practising and, by the evening, you led me to the picture you had shown me and said the word, almost perfectly. You really, really wanted – and still want – to speak fluently, but you just couldn’t and it breaks my heart that you still can’t.

I tried to help you in many ways and I’m so sorry some of what I have discovered may be too late to make much difference.

One thing I should have done was to have you tested for epilepsy as soon as it was

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possible. However, you were very lively, running and climbing everywhere, smashing and grabbing anything that took your fancy, and you certainly would not have tolerated a lot of wires being glued to your head so that the doctors could see, as we saw when you were 12, that you were having absences every seven minutes. Medication for this from birth could have changed that, and it might have changed your whole life.

There was a shortage of speech therapists in Wales where we lived, but when you were eight, we finally found a gifted teacher who taught you a few of the small linking words that helped you understand so much more.

Another breakthrough was when your special needs teachers taught you how to use a computer mouse. You loved your Reader Rabbit CD Roms – I just wish there hadn’t been a points system that blocked you from moving onto the next level. So you were stuck at the naming of objects stage and unable

Anna’s advice to carers Get as much respite as you can – caring is proper work, too, and probably much more exhausting

to access simple sentence structures. I’m trying to make up for this now with more advanced software.

We won a tribunal to get you into a weekly boarding school especially for children on the autism spectrum. For two years, you made great progress, but then you began to have regular, full-on seizures and you developed OCD. When you were moved to a ‘challenging behaviour’ class, I didn’t realise you were scared of being attacked, not only by one of the other pupils, but also by staff who used hold-down methods. Your trust in people and your surroundings disintegrated and I am so, so sorry that it took me so long to get you out of there.

● Try the Motability Scheme, which helps people with a disability exchange their mobility allowance for a new car, mobility scooter or electric wheelchair. The new car and running costs they provide will save you money and stop you from being stuck at home. ● Get rid of air-fresheners, smelly washing products and most food additives – this should result in more sleep, and fewer headaches and upset stomachs. ● Get as much respite as you can – don’t let your partner shirk their duties by saying they need to be fresh for ‘proper’ work – caring is proper work, too, and probably much more exhausting. ● Find a school that isn’t too rigid – structure is important, but do not subject your child to a strict regime. ● If you are trying to obtain support as a parent, don’t minimise your problems when you fill in your application forms – make sure you describe just how difficult your life can be.

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You had grown to nearly six foot tall and became very strong. If I took you out, you had to touch and name every item in every shop three times. If friends visited me at home, you roared at them and, if anyone telephoned me, you screamed at the top of your voice right next to me. You made me sort your CDs and books endlessly, even if it was 2am. You lost all the skills you had gained from toddlerhood, you couldn’t dress yourself, and you didn’t seem to understand anything I said to you. You were a lost soul, and I was lost with you, isolated and unable to bring you back to being the happy youngster you had once been.

When you went into full-time care – in a minimalist but comfortable environment with caring staff who never used the brutal methods applied at the other school – things got better. It was months before you would agree to leave the flat there, but within the year you were enjoying group activities again and thriving in a creative class. You danced at discos, went kayaking, biking and enjoyed

“Life is never dull” Anna says: “Living with Huw made his sister, Rhiannon Lucy, and me realise what is important in life. We learnt that it is those who care who hold our society together, whether they do so as family members or as employees. Such carers need practical and financial recognition – present government, please take note.

“Life is never dull with an autistic person and I say this having had to deal with fire, flood and possible drowning.

There are many wonderful moments and uplifting breakthroughs in my book, Your life as I knew it, and I hope readers find it inspiring. I also wrote it for Huw, to say: ‘I know you understand a lot more than you can say. This was our life, too, and we treasure growing up with you, all of us together.’”

gardening. You had friends your own age and people around you who understood you and could teach you ways of coping with the world. I cried when you went, but I had to give you up. I wasn’t strong enough or entertaining enough for you, my growing, precious, much-loved son – nor could I ever be.

You enjoy my visits, but also like your independence from me, so let’s both say thank you to those fantastic people who now look after you and make a wish that everyone like you can find similar happiness.

With love always, Mum xxx Read more

Read more about assessments and support for carers at www.autism.org.uk/carers Carers’ Week is 8-14 June 2020. Find out more at www.carersweek.org Read more about Anna’s book, Your life as I knew it, at https://unbound.com/books/ your-life-as-i-knew-it, where you can also read an extract.

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Interview

Lee (second from right) receives his Autism Professionals Award

“I have a different perspective on life now” Lee Corless won our Outstanding Achievement Award for leading JP Morgan’s Autism at Work programme across the UK and Europe What’s your role at JP Morgan?

Part of my role is to support the global Autism at Work programme by leading activities in the UK and across Europe. This involves ensuring there is access to training, mentoring and a wide network of support for our existing employees

on the spectrum. I support colleagues in building an improved culture of understanding, so that all of our workforce feel they can bring their best self to work each day. The most important thing is raising awareness of our programme, with the aim of hiring more qualified

Lee’s advice for autistic jobseekers ● List all your strengths on your CV, including those self-taught and those that may be associated with your autism, such as attention to detail. ● If you’re comfortable doing so, declare early so the correct support is put in place and you can show your strengths. Never be worried about asking for those adjustments. ● Look at each individual job and pair your skills to that. Do not pair your skills to an industry, as there are far more jobs than industries.

autistic individuals into meaningful roles across the firm. We engage with schools, colleges, universities and not-for profit organisations to help us do this. More recently, I have been sharing best practices with other companies thinking about building their own programmes.

Why did you want to lead the Autism at Work programme in the UK and Europe?

Being on the spectrum, I wanted to help create more opportunities for colleagues. Having a son on the spectrum was another factor, and I wanted our company to lead the way in creating more opportunities for others like us, so that, in time, my son could see our skills are just as important as everyone else’s.

How does the programme support autistic employees?

It offers a buddy system to help in difficult situations and a mentoring programme to help build confidence

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Interview

and skills towards progression. We also offer training for managers and colleagues on understanding the strengths that autistic employees bring to our company. Furthermore, we offer guidance on adjustments required in the workplace and technology support. Most importantly, we offer life skills to those who require it, such as how to manage money or pay rent, for example. The employee is at the heart of what we offer, and our work is done in consultation with them, understanding their needs and level of comfort in disclosure.

What strengths do your autistic employees bring to JP Morgan?

Having a diverse workforce is key to any company’s success. We need people to look at problems and situations from different perspectives and have a workforce that mirrors the clients we serve.

People on the spectrum can bring a very analytical way of looking at tasks, a fresh, direct way of approaching problems and a determination to get the job done.

In the environment in which we operate, the ability to follow process and get things right first time is a key skill. Some of our processes are repetitive and have high volume, so people on the spectrum come well qualified to enhance these roles.

What’s your message to employers?

There are lots of talented, dedicated, loyal, hardworking individuals on the spectrum that – for one reason or another – have continually been overlooked. They will add real value and diversity to your workforce.

Therefore, you should find a way to improve your hiring within this community.

but I could adapt them. This helped focus my energies, focus on my strengths and be comfortable with who I am. It still knocked me for a while, but I slowly built up my confidence. I have a different perspective on life now, and that is a great thing.

What is having Asperger syndrome like for you?

Lee Corless

What prompted you to seek a diagnosis?

I have always known I act and think differently in many situations. When I entered corporate life, some of those behaviours were seen as ‘not standard’, and caused some issues.

One day, I got the final push I needed to get a diagnosis so I could understand myself better. My wife was a great supporter, and pushed me and my doctor to seek answers.

A number of behaviours my autistic son displayed, my wife could see in me. We both felt that knowing would be better for me than uncertainty.

How did you feel when you were diagnosed?

When I got my diagnosis 13 years ago, it helped me to realise that I couldn’t change some behaviours,

I love the company I work for and the support it gives me is fantastic.

However, I do still carry insecurities.

I sometimes doubt how I am perceived and whether people see I am good at my job. There are times I overthink conversations and situations. I struggle with the social aspect of my work and I can be very direct and blunt, but I don’t mean to be and I work hard to not be. The best part is the culture I work in means that many understand this.

Having not fitted in for my entire life, it is a difficult change. Even being in a company that supports inclusion and diversity, there is still that mental struggle, but there are great people to fall back on for support.

How did you feel when you won our award?

I couldn’t believe it. I do what I do because I enjoy it, and I do it to provide inspiration and show what is possible. For people outside of my workplace to recognise that, I was just dumbstruck. I am so honoured and now think: how can I help to do more? How can I continue to inspire and lead?

Find out more about JP Morgan’s Autism at Work programme at www.jpmorganchase.com/ corporate/news/stories/neurodiverse-hiringbrings-social-and-business-benefits.htm

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Creativity

Autism and art Creating art has so many benefits for autistic people – we spoke to Jodie Freiter at Artrack and Anita Woolf and Vinicius Les at Maxability Julia’s Paul Klee-inspired stitchwork; Nadir’s Marvel(ous) pop art mural; Michael’s 1980s music-inspired sculptures… the work produced at our Artrack studio in Gravesend, Kent, has been exhibited widely.

You may have received our Thanking Day postcard in January, designed by Michael Byrne, a frequent visitor to the service.

Artist Jodie Freiter, who runs Artrack, says: “Artrack has a variety of materials for the people we support to express themselves creatively. They can get involved in painting, printmaking, sculpture and textiles, and everyone is encouraged to try the different media available.

“I like to encourage people to extend their knowledge of art and materials by introducing them to artists’ work through books and online. They can learn about the medium and styles in context by creating their own versions of the artwork they like. This helps the artists to develop their own style and find out what interests them. Everyone works at a different pace and has varying abilities, so all of the sessions are tailored to individual needs.”

The service’s 16 students attend the studio throughout the week; some come for three or four days, and others for just one session.

Creating art is a great way for autistic people to express themselves, emotionally and physically. Jodie adds: “For some of the people we support, creating art is all about

Artrack’s Nadir at work

Clive’s story Clive has been coming to Artrack for almost 20 years, and his style has developed tremendously. He is very prolific; looking at his portfolio, you can see clearly how his style has changed through the years, from abstract to figurative. He is interested in learning how to add different aspects to his work and has recently taken to embroidering his painted canvases. Clive has begun to work from his own photographs of places he has visited, and has created really beautiful work from them.

the process. They find enjoyment in making the work, and are not too concerned with the outcome; others like to work hard at something they can be proud of. We have frequent exhibitions, which gives the artists a great sense of achievement and helps them to engage with the community.

“In 2019, I entered some work into the Turner Fringe Art Competition. Four of our artists were shortlisted, and we went to Margate to the prizegiving event, where we met Tracey Emin, who was judging the competition.

“I love seeing the artists progress and develop their style, especially when they are learning new skills. It makes me really proud.”

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Creativity

Jodie Freiter’s lockdown art project Jodie says: “I think it’s important for people to get creative during this time, and a great thing to do is to recycle materials you have at home.

I’d recommend making a mosaic picture, as you can use all kinds of materials that you have lying around.

“First, decide on a subject – it could be a person, an animal, a landscape or just a shape. Use a pen or pencil to draw your image, or get someone to help you.

“Next, you will need to make your mosaic pieces. Think of the colours you would like to use, and find things that could be cut up into 1cm pieces if need be. You can use paper, card, newspaper/magazines, items from the recycling, straws, shells, buttons, beads, and so on. Using a variety of materials will create a nice mixed-media piece with interesting textures.

“Use glue to stick down the mosaic pieces in the drawn-out areas, leaving no gaps if possible. Glue them down well, so they don’t fall off when you put it on the wall!”

Peacock by Tim Allen

Anthony’s story Anthony’s father has dementia, which upsets Anthony a lot, but he really enjoys attending Maxability (see overleaf) twice a week. He didn’t go to any activities before. He started off by drawing and, one day, sat with his hands crossed over. He was asked to sketch around his hands, and the final drawing was very colourful.

Then he moved to putting his drawings onto clay plates and other objects. He always starts by doing a drawing, and then presses the design into clay.

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Maxability

Anita and Emile Woolf set up Maxability in Barnet, northwest London, in 2009. Its formation was inspired by their son, Carl, who is deaf and physically disabled.

To support him and others with disabilities, they set up ceramics, pottery, art and photography classes, so participants can discover and develop their latent talents and artistic abilities.

Anita says: “Our autistic students are highly motivated. They are artists in the highest sense of the word, and I love to give them the possibility of showing their work so that the public can recognise their extraordinary talent.”

The group recently sold their ceramics at the Jewish Museum in Camden Town, London.

“Selling their work increases our students’ sense of purpose and self-worth, and supplements their benefits,” says Anita.

Describing his teaching approach, ceramics tutor Vinicius Les, says: “When a student first comes in, I always use the first session to sit and get to know them. I will give them some simple tasks to start – drawing some lines or shapes – and then ask them to place something else on the paper to see how they approach it.

“We move on to working with clay. I break all tasks down into steps, which helps students focus and feel a sense of achievement when they complete them.”

Nadir’s story Nadir’s favourite medium is acrylic, and he enjoys painting subjects ranging from Marvel animations to nature. He spends a lot of time preparing for a painting – he will choose his subject and then source images online, which he will adapt for his work. Nadir also has a fantastic imagination and his work often follows a narrative. His pictures tell a story of the subject, and it’s something he is very passionate about.

Thor by Nadir Rizwan

Artrack artists met Tracey Emin at the Turner Fringe Art Competition

Please note that classes have stopped because of coronavirus, and this information is for when they resume: Artrack operates on a referral basis. Phone 01474 535080 or email se.service@nas.org.uk for more information. See the artwork at www.pinterest.co.uk/NatAutisticSoc/artrack and www.instagram.com/Artrack_nas Maxability is open entry, and people pay a small fee per class.

Read more at maxability.org.uk

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In-depth

We catch up with one of our charity’s founders, Michael Baron, about guardianship for autistic adults with learning disabilities

“Welfare deputyship is difficult to apply for” Tell us about your son, Timothy.

Timothy is 63 years old. He’s in a marvellous care home that specialises in people with epilepsy and learning disabilities. He’s been there for four years, after his previous care home closed and we had three months to find somewhere else. My daughter happened to meet a parent who told her about his current home, and we liked it very much. Timothy has fitted in very well.

Otherwise, he’s been ‘around the place’, as many people who were diagnosed in the early 1960s would have been. At first, we had a little teaching unit at home, and from there he moved to High Wick, a specialist unit near St Albans. Then he went to a Rudolf Steiner school at Craigavad, near Belfast, where he was very happy. The catch was picking him up and having the car stopped and searched by soldiers. So Timothy came back to England in

1974. He was among the first intake of the National Autistic Society’s Somerset Court, where he stayed until 2003.

If I were to describe him today, I’d say he’s OK. His speech is very limited and, like many other autistic people who have epilepsy, he has fits. He’s happy at his current care home.

When an autistic child with learning disability reaches adulthood, who makes decisions about their care and health?

In reality, it’s the local authority that makes the decisions, as they pay the bill. But under the Mental Capacity Act 2005, parents or relatives can apply to become welfare deputies – it’s a legal status that gives them a greater say in their adult child’s living arrangements, care and medical treatment. Prior to the Mental Capacity Act 2005, there was no law in the UK

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In-depth

(excluding Scotland, which has its own capacity legislation) about the guardianship of adults with learning disabilities. Until then, you could only get legal protection if there was money or property that the dependent person inherited or acquired. For example, if someone was brain damaged in a car accident, a receiver would be appointed to look after their property. But it didn’t apply to the person’s personal welfare, healthcare or accommodation. So the 2005 Act was a landmark when it came into force.

In your experience, to what extent are parents consulted on decisions about their adult child’s care?

Well, it depends on the local authority. There are good intentions that the best decisions about the person’s care will be made, but local authorities are governed by the availability of money and services. Personally, our family has had no problems finding places for Timothy, but many parents have had huge issues.

Why did you apply for welfare deputyship?

My two daughters are deputies for Timothy.

We decided to apply for the order in case the local authority that pays his fees suddenly decides it is paying too much, and decides it can provide the same service for Timothy at such and such a care home – and therefore it’s in his best interests. We can then apply to the court straightaway to oppose that.

Act. It says orders ‘should only be granted in the most difficult circumstances’.

There are parents, like me, who have obtained welfare deputyship orders. In our case it was straightforward. The GP certified that Timothy was incapable, and we eventually got the order. That took three months and cost £2,000.

I think there’s been a steady but low flow of applications for welfare deputyship orders, but most people don’t apply because they don’t think they can get it, or the process is too difficult. But the court, in my experience, usually does grant them if you fill in the forms correctly.

What did the test case in 2019 by three parents achieve?

The judge agreed with the parents that the Code of Practice needed “revisiting” – not amending – because it had issues. I went to the first day of the hearing and the judge was clearly worried he could open the floodgates to applications. No floodgates were opened.

It’s a compromise that has moved us forward a little, but not as much as I would like. Now the question is: how is the Code of Practice going to be revisited?

Do many families have welfare deputyship?

When I began looking into it in 2014, there were very few parents I knew who had welfare deputy orders for their kids. Welfare deputyship is difficult to apply for. There are many forms to fill in, lawyers don’t know very much about it, and it takes time – and that wears a lot of people out. If you do it yourself and get something wrong, it will get rejected.

And it’s still difficult because of the wording of the Code of Practice, which guides the courts’ interpretation of the Mental Capacity

Hear more from Michael Baron with autistic filmmaker Robert John Windows at www.youtube.com/user/ NationalAutisticSoc/videos

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Readers to the rescue!

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

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

Q

My four-year-old autistic nephew has a meltdown whenever he has his hair cut. We’ve tried different salons and buying clippers to do his hair at home. He is nonverbal so he can’t say what he doesn’t like about it. How can we help him? Kelly

Start at home, try a mobile hairdresser or do it yourself.

I used to cut my son’s hair in the bath when he was happily distracted, or even in a paddling pool in the garden in summer. Initially, do this without the trim.

Then when he can manage sitting for a few minutes, get out the scissors.

Offer rewards and breaks through the process. It takes two adults – one to be the hairdresser, and one to offer encouragement through verbal prompts and signing to stay sitting and still.

We used a ‘Now: Haircut, Next: Car’ mini schedule.

This way he understood that after his haircut he would be going out in the car, which he loved! Rose

I found a small salon and talked to the stylist about my son’s autism. He let us attend before the salon opened and left the lights low and the radio off. I sat in front, but off to one side, so my son could see me and I was able to hold his attention while the stylist worked. Paul

Help me next!

My amazing son, aged 23, is autistic and shows ‘challenging behaviour’. He shreds his shoes and clothes when the mood takes him. Does anyone know of any robust and comfortable shoes that can survive the herculean strength of a 6ft3 young man? Mary

iStock .com / SDI Productions

A

For expert advice on any autism-related issue, contact our Autism Helpline via the form at www.autism.org. uk/helpline

I struggled a lot with haircuts as a child. I hated the feeling of cut hair down my back (itchy) and the noise of the clippers (too loud). Even the lighting could be difficult.

Using silent clippers (or special scissors rather than clippers – look at ‘Calming Clippers’), as well as dimming the lights helped, as did taking extra care with the gown/ collar to avoid any cut hair falling down my back. Matt Rose wins a signed copy of The Curious Incident of the Dog in the Night-Time by Mark Haddon.

● Visit www.autism.org.uk/hairdressers and www.autism.org.uk/digitalyam

Send us your solutions for a chance to win Supporting positive behaviour in intellectual disabilities and autism: practical strategies for addressing challenging behaviour

by Tony Osgood.

By writing to us with either a problem or an answer, you give consent for your letter to be published. We reserve the right to edit submissions.

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Advice

Coping with anxiety It may be a natural response to certain situations, but anxiety can be overwhelming.

Tracey Lattimore asks experts how to deal with it Some people experience anxiety on a regular basis as a result of situations that others might see as completely ordinary, and this is especially true for some autistic people. When anxiety becomes a problem, feelings become more intense or overwhelming, and out of proportion with the particular event.

Speaking on the telephone to people she doesn’t know causes anxiety for 19-year-old

Hope Teal, who has Asperger syndrome.

“When I do this, I tend to either freeze or go really quiet, which makes it worse,” she says. “When I go up to people to ask questions, I always worry that I’m going to say the wrong thing or not make sense.

Going to new places where I don’t know the surroundings also makes me anxious.”

For Hope, new people, new situations, change and unpredictability all cause anxiety. “To help manage it, I like reading as I can escape into my own world away from reality,” she says. “I also like yoga and photography because I find it therapeutic.

I try to talk to people before it gets too much, although I have a tendency to bottle up my feelings.”

Tips to help prevent anxiety

For many autistic people, anxiety affects them both psychologically and physically – it

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can often be hard for people to understand and cope with their emotions. Lots of things can cause anxiety. For instance, many autistic people react favourably to a routine and predictability, but they can also become anxious about their routine being disrupted, causing further anxiety for the future.

Mandy Rutter, Autism Training Consultant at our charity, explains that general good autism practice through a proactive approach is at the heart of supporting autistic people. “This can be summarised by using the SPELL framework [Structure, Positive approaches and expectations, Empathy, Low arousal, Links],” she says.

“We prioritise the five areas by starting with empathy, then positive approaches, lowarousal structure, and links.”

If you can identify what’s causing the anxiety, there are some steps you can take to help manage it. Rutter recommends: ● Know the person. ● Plan any changes, if possible. ● Provide a visual structure of the day/part of the day/now and next – this will reduce anxiety. ● Individual coping strategies may include some sensory stimulation, time in a quiet space, or time spent on an intense interest. ● Use anything that will distract the person in a positive way. This could be a favourite item, topic of conversation, or a food item. ● Reduce your language – do not bombard the person with information. ● Remove other people from the situation. ● If possible, direct the person to a different environment. ● Be kind.

Our Brain in Hand app can also help with anxiety – see more at www. autism.org.uk/braininhand Take a look at the SPELL framework at www.autism.org.uk/spell

“The public often raises my anxiety” Joseph Connor has Asperger syndrome I went through a very bad period of anxiety in August 2018, which could have been caused by working full-time and having to commute. My GP asked me to stop working and consider some lifestyle changes. Having since gone into education in accountancy, I’ve struggled to get work for the past two years.

I can no longer go to certain places at specific times, as the public often raises my anxiety, especially in crowded or noisy places. My driving is now restricted as, on certain roads, I kept meeting too many idiots, which just raised my anxiety and gave me flashbacks. So now I only drive if it’s essential.

Energy accounting is also a useful tool.

Developed by autistic speaker and educator Maja Toudal, it is based on the premise that everyday activities and tasks can be a real energy drain on autistic people, potentially causing high stress levels, so they need to build in time to replenish this energy. The idea is that you give each task or activity that drains you of energy, such as a work meeting, a value – these are your ‘withdrawals’. Do the same with any activity that makes you feel better, such as watching a film – these are your ‘deposits’. Then look at your daily schedule and try to ensure you have enough energy deposits to counteract the effect of the energy withdrawals. Hopefully, by using this system, you’ll have enough energy for the things you want to do each day, without leaving yourself drained or stressed.

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Education

Moving on up How can you make a smooth transition from school to college or university, asks Georgina Maric?

Gaining a place at college or university is exciting, but the thought of moving from a familiar school environment to a new educational setting can seem daunting. Find out what structure you can put in place to make it as anxiety free as possible.

Share information

“It’s important to make contact with the special education or additional support needs and/or disability staff at the college or university to see what knowledge and understanding they have of autism,” says Wendy Flewitt, Transitions Support Service Coordinator at our charity.

“Have a list of questions prepared to find out exactly what support will be put in place. Discuss what reasonable adjustments will be needed for individual students, including those with disabilities, to ensure that the support and extra equipment are set up when they arrive.

Find out how the course is delivered and assessed, and make the college or university aware of what adjustment and support the student will require.”

Familiarise yourself

Flewitt suggests, where possible, making frequent visits to the new college or university to enable students to get used to new environments, sounds, smells and noise levels, and to start to orientate themselves.

Students should have access to a named member of staff

“If it’s too far to visit, many universities have 360-degree tours of buildings and accommodation online,” she says.

“There is also a lot of information on YouTube that is easy to access for the different universities.”

Travel training

Ensure students know how they are going to get to and from college or university, and assess what kind of support may be necessary. A personalised map of their travel arrangements and of the college or university itself will be useful to have in advance.

A named contact

“Students should have access to a named member of staff who they can contact before and once they start their course,” says Flewitt. “The student needs to be able to communicate effectively with a member of staff if any issues arise.”

Ask the college or university to put the student in touch with other students who already attend, who they can contact via email, text and/or social media, to find

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Education

out about their experiences. These should include autistic students if possible.

Safe space and mentors

All colleges and universities should be able to provide mentors for students, so before you start, make sure this is in place. A safe space should be provided both during lessons, as necessary, and during free time.

The university or college should ensure there

Read more

For more information on the transition from school to college or university, go to www.autism.org.uk/transitionsupport For a direct link to the starting college/uni resource, go to www.autism.org.uk/about/ transition/starting-college-uni For the Transition Support Service, call 0808 800 0027

is support to practise social interaction to enable students to cope more effectively and to reduce anxiety.

“Information should be provided in the format that most suits the individual student’s communication style relating to classes, study time and leisure time,” says Flewitt. A personalised planner from the college or university special needs department should include this, or the students may want to use an electronic version if it’s available.

For students who are able to claim Disabled Students’ Allowances (DSA), a detailed plan will be given in advance outlining what support the university will provide for the student.

The student should be informed about how many hours of study and/or mentor support they can expect each week or month.

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Education

Reduce anxiety by planning ahead

“If the transition plan is effective, it should help to reduce some of the anxiety as the student should have already familiarised themselves to some extent,” explains Flewitt.

Equipment lists, required text books and reading lists should be available in advance to aid preparation. Staff or mentors should be made aware that this will be an extremely difficult time, and it should be taken into account that this may reflect in behaviour. They need to ensure support is in place for the student, as well as the flexibility to review arrangements if they are not working.

“Mentors should be mindful of the potential for isolation at this time as this

will impact on motivation and mental health, which could jeopardise the success of the placement,” says Flewitt.

“Life skills training, including money management, travel and lifestyle skills, will be crucial at this time. Ensuring that students have access to clubs, societies and activities and any social groups for students who have disabilities will also help to reduce isolation.”

The Brain in Hand app that delivers support services using assistive technology may be useful for autistic students, and many university applicants can get this paid for by their DSA, and college students in England may get it via their EHCP (Education, Health and Care plan).

My tips on transition Georgia Fielding, 19, started at St Andrews University, Scotland, in September studying Spanish, Italian and German It took me a while to figure out if I wanted to attend my local university or move away. The idea of leaving behind what I had known for 19 years was petrifying, but I didn’t want to lose an opportunity to be independent. In the end, I moved a six-hour drive away! I focused on how it felt to be there and, during open days, I imagined myself living and working in the halls of residence. St Andrews felt like the best fit.

I struggle with meltdowns induced by sensory overload from lights and sounds, so I chose the university that was the smallest – both in size and population, easiest to navigate

and had a good support network, such as wardens in halls and accessible student services.

I declared my autism before I enrolled so I knew I had support when I started.

When my place was confirmed, I panicked, but found the best way to deal with this was by making an insane number of checklists including what I needed to pack, buy, and all the admin I had to do.

I also made a day-by-day plan of the weeks leading up to my departure, including the exact time and day I would go to Ikea, for example.

Looking back, I wish I had taken the time to look around the uni properly and find all the relevant buildings and rooms, because I spent the first week of classes very lost and anxious.

The hardest part was Freshers’ Week, which was so loud, scary and exhausting meeting so many new people. I was required to sign up for all my classes and modules, which I didn’t feel confident enough to do, and everything was processed online, which was confusing and overwhelming. Ask questions!

I emailed people and spoke to many, and it was useful to have that support. It allowed me to enjoy the experience a bit more.

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Meet the team

“Finding the branch was like finding water in the desert” Meet Sara Truman MBE, volunteer extraordinaire, Chair of our Surrey branch and winner of last year’s Volunteer of the Year Award How long have you been Chair of the Surrey branch?

I became Chair in 1999 and initially held the role for 12 years. In 2011, another committee member took over as Chair and I became Deputy Chair. In 2017, she stood down and I became Chair again.

What does your role involve?

I co-ordinate all the Surrey branch’s activities. We run general parent support groups and specialist groups (Parents of Girls, Parents of Adults or Spouses and Partners). We also run talks for parents and activities for autistic children and their siblings. I represent parents on committees such as the Surrey Autism Partnership Board.

How would you describe a typical day?

I might go to one of our support groups, attend a meeting about local services or organise our next event. People often assume we are paid staff with an office, but I am doing the branch work in my

spare time, and the branch ‘office’ is my living room!

What inspired you to volunteer?

My son was diagnosed with autism at the age of five. I didn’t know anyone else with an autistic child. When I discovered the branch, it was like finding water in the desert.

Talking to other parents was life changing, so I wanted to help other people get the same support.

Congratulations on winning Volunteer of the Year – how do you feel?

Amazed and very honoured.

Any hobbies?

I love singing in choirs.

Volunteers’ Week runs from 1-7 June. Hear more from our fantastic volunteers at www.autism.org.uk/volunteer

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Notebook

Everything you need to read, do or see

Calm with Horses

OUT ON DIGITAL (iTunes, Sky, Amazon, Google, Curzon and BFI) now VERDICT: Gripping film with a realistic portrayal of autism Calm with Horses is a film that features Jack, a fiveyear-old autistic boy, and his parents, Niamh and Arm. Set in rural Ireland, ex-boxer Douglas ‘Arm’ Armstrong has become the enforcer for the drugdealing Devers family, while also trying to be a good father to his autistic son, Jack. Torn between these two families, Arm’s loyalties are tested when he is asked to kill for the first time. Even though the film’s story is a violent and perhaps extreme one, the experiences of autism we see are more universal. Both the strengths (Jack’s joy while riding horses, and the love he has for his family) and the challenges (the fight for the right school and people’s judgement) are things many autistic people and their families can relate to.

We know that some autistic people who come into contact with the criminal justice system are exploited, and this is something to think about as you watch Arm’s relationships throughout the film.

George Stanbury, Campaigns Officer at the National Autistic Society

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

Autism and me: Expert tips and mindful activities for autistic people AUTHOR: Haia Ironside, illustrated by Ellie O’Shea PUBLISHER: Studio Press PRICE: £9.99 VERDICT: Very useful to help children understand autism

This book is aimed primarily at the children’s market; however, it is full of useful ideas, expert tips and fun activities for both very young children and older ones. In fact, I enjoyed some of the activities. The book is written in an easy-to-understand style – it contains no jargon or complicated instructions, so it’s simple to read and follow, even for younger children. You can personalise the book through the activities while learning about autism. For instance, what is autism?

What are some of the words used to describe it and the traits autistic people may have?

This book is useful for parents, carers and siblings of autistic children because it enables them to explain autism in a clear and fun way. I really wish this book had been available to me as a child, because it would have helped me to understand my own autism.

Patricia Higgins, Your Autism magazine reader

Giveaway

Our charity provided input to make Jack’s experiences as realistic as possible. We met the producers in 2017 and shared our ideas and reviewed scripts; they were committed to representing a truthful experience of autism in their film.

We have two copies of Autism and me: Expert tips and mindful activities for autistic people by Haia Ironside to give away to members.

For a chance to win a copy, email your details to YourAutismMag@nas.org.uk by 30 June, quoting ‘Autism and me’. The winners will be announced in the next issue.

The winner of last issue’s competition is Jakki Rhodes, who gets a copy of Keep clear by Tom Cutler. Congratulations!

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Notebook

Not weird, just limited edition: Inside the autistic mind

and there is a combination of addressing the reader and giving information about the author herself.

What struck me most was the positive attitude and optimism, including some ideas that were new to me such as ‘rejection is protection’. You can really relate to lots of the points discussed in this book.

Lucy Armstrong, Your Autism magazine reader

AUTHOR AND PUBLISHER: Faye Flint PRICE: £11.99 VERDICT: Gathering of thoughts, experiences and advice by Faye, who was diagnosed with Asperger syndrome aged 27

This book is almost poetic in its layout. You can dip into any part with no need to read it in the traditional way because each page seems to be self-contained. The book is inviting and easy to read because of the short sentences

Our six favourite… things to do at home

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Connect with our online community

Fundraise

While the world is going through a period of uncertainty, you can host a quiz or a gaming fundraiser from your home. See www.autism. org.uk/virtual for tips.

A great place to chat to fellow autistic people, parents and carers, and talk openly about all things autism, is through our forum at https://community. autism.org.uk

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Get sensory with slime

Gelli Play turns water into gooey slime. Thanks to its unusual texture, it is perfect for autistic children who want to try some sensory play. Find it online at www.amazon. co.uk

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Puzzle it out

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Get into yoga

Whether you’re a yoga enthusiast or a budding beginner, now is the time to practise! Websites such as Yoga for Autism include free online videos, specifically designed for autistic adults and kids alike, see more at www. yogajournal.com/poses/ yoga-for/yoga-for-autism

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Read The Spectrum magazine

You can catch up on the spring issue of our magazine for autistic adults, filled with new autistic art, articles, poetry and prose at www.autism. org.uk/thespectrum

Puzzles are ideal for parents who have small children at home. In these puzzling times, why not entertain the family with a few jigsaws or fun board games?

Do you have an idea for our six favourites section? Email us at: YourAutismMag@nas.org.uk

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Snapshot

I’m a… junior doctor

Harri Wilson is a doctor on the autism spectrum treating patients with coronavirus (Covid-19)

Since the coronavirus pandemic began, there has been a huge amount of uncertainty. The hospital emails an updated plan every day, often two or three times per day. Juniors were supposed to rotate to new jobs on 1 April, but this has been cancelled. Instead, we are being redeployed at very short notice to parts of the hospital that need more doctors – areas we’ve never been to before. It’s been so stressful not even knowing a timetable for the next few days, never mind the next few weeks as, like lots of autistic people, I need time to prepare for a change to happen. Having said that, all the staff have really pulled together. Everyone is determined to do their best, and the way everyone is so generous in helping each other out all the time makes me really proud to be a part of the NHS. I don’t struggle with patient communication.

I attended lots of simulations through university to improve my communication skills, and now, although I have my own style, communication is where I get the best feedback. I always notice lots of details other people miss and this can be really important in making the right diagnosis or picking up that a patient is deteriorating.

I really love it when you get to solve something vitally important to the patient.

As a junior, you are the ‘middle person’ and responsible for finding out what matters to each patient and making sure the team knows about it, as well as ensuring the Are you doing something amazing that you’d like to tell readers about? Let us know at YourAutismMag@nas.org.uk Read Harri’s story at www.autism.org.uk/stories

patient understands what is happening.

This can mean little things like tracking down the one type of food a child will eat, or big things like controlling someone’s pain.

When I have autistic patients, I always take particular care to find out their needs and make sure they are met.

When I started work, I was worried people would judge me based on my ‘quirks’ rather than my abilities. I’ve found as long as you are friendly and honest, and do your job well, nobody really minds. For example, I wear clothing of a non-irritating texture and ear defenders. I also flap and do other ‘stims’. The autism team who diagnosed me explained the recharging effect of engaging in special interests, so now I prioritise time by myself to engage in my hobbies. I tell my partner I am just going away to be autistic for a while…

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