Your Autism magazine - Autumn 2020

YOUR Autumn 2020

Back to school

Teen author’s tips for girls

Unexpected change How to cope

Flour power

Mum and son’s baking bond

Plus

Supporting BAME communities, and energy accounting

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Autism Autumn 2020_02-03 Contents.indd 2

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YOUR

Days of change

Autumn 2020

34

EDITOR Suzanne Westbury YourAutismMag@nas.org.uk Contributors Hermione Cameron, 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 Autumn Vol 54, 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.

Autism Autumn 2020_02-03 Contents.indd 3

Wesley’s baking journey

Contents

12

Siena’s school tips

26

What’s new?

04

Back-to-school tips

26

Home Heroes

08

Readers to the rescue

29

My diagnosis

11

Doubly different

30

Wesley and Elainea

12

Unexpected change

34

Songs for Emily

16

Meet the team

39

Energy accounting

20

Notebook

41

Autism in BAME families

22

I’m a... racing driver

46

A round-up of the latest news

Meet the lockdown fundraisers

Kelly’s life-changing year

Mum and son cook up a storm

A dad learns to ‘talk’ with music

How to keep stress in check

Communities need more support

By teen author Siena Castellon

How to find robust shoes

Grace Liu on race and autism

Find structure in strange times

Wendy and Abbie at Neath

Things to read, do and see

Jack, 15, on life in the fast lane

Nine out of 10 autistic people worried about their mental health during lockdown 05 Autumn 2020 3

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What’s new?

Get in touch!

Our round-up of the latest news and views

Welcome to our new website!

Have you discovered our new website yet? Launched at the end of August, we still have the same useful content and features – like the online community – but it is much easier to find the guidance you need. ● Information and advice about autism. On our new website, it is easier to find the topics you are looking for, and then to move easily to related information. And we’ve introduced more information on the topics you’ve told us are important, such as mental health, and we will continue to review and improve our autism information. ● Autism information that’s tailored for you. We’re gradually introducing guides tailored to your needs as an autistic person, and/or a family member of someone who’s autistic, and/or an autism professional. Of course, you’ll be able to look at all content, but you’ll also be able to search for information and other content that’s tailored for you. ● Content for autism professionals: changes to

Network Autism. Between now and the end of the year, we’re going to be integrating articles from Network Autism, our website for autism professionals, into our new website. This means even more people will have access to this great content, written for and by experienced autism professionals. Let your teachers or support workers know.

Autism accessibility Most importantly, the new design is based on research with autistic people to work out how to make websites as accessible for autistic users. We worked with a company called Hassell Inclusion to help us do this research. We followed the international W3C AA standard in creating the site. But then we added more features based on this new, groundbreaking research. As a result, our new website: ● has clear, clutter-free and consistent design and navigation throughout ● allows you to personalise the

design depending on your needs. For instance, you can change how bright the colours are by clicking from vivid to calm ● doesn’t automatically start showing videos – autistic people told us this can be very disruptive ● aims to keep language simple and jargon-free.

We want our new website to do an even better job providing you with the information and advice you need, particularly during key life challenges like getting a diagnosis, finding a school or job, or dealing with mental health issues.

We also want to make it easier for you to find out about our services and other autism services UK-wide through an improved Autism Services Directory – and how you can get involved with our campaigns, fundraising and volunteering.

www.autism.org.uk: ● Nearly six million people visited our website last year. ● 88% of people who had used the site told us in a recent survey that they found it helpful.

4 Your Autism

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National Autistic Society 2020 Christmas card order form 01227 811 647 www.autism.org.uk/ch ristmas-cards Card title 1 2 3 4

Silent Night (Competition Robin (Competition

Price

winner)

Total

8

£4.25

9

£3.95

10

£4.25

Pass the Parcel Sprout Skiing Santa

11

£9.00 £3.95

Blissful Robin

£3.95

UK postage and packaging

costs

Please note that you will be responsible for postage & packaging costs if you return part or all of your order unless faulty.

Orders £10 and under = £3.75 £10.01 to £50.00 = £4.75 £50.01 and above = £6.75 For overseas, please contact our enquiry line or go online

Title

News Office use only

Order No: Date:

Card title

£4.25

winner)

Shepherd’s Delight The Nativity

5 6 7

Qty

Qty

Partridge in a Pear Tree

Price

Donations

All donations to the National Autistic Society received. If you would are gratefully like please fill in the donation to add a donation to your order, section on the order form. Thank you.

Total

£4.25

Polar Bear

£3.95

Golden Wreath

£4.25

Playful Robins Quad

Pack

12

Snowman and the Robin

13

Frosty Winter

14

Reindeer Tree

15

Luxury Pack

£4.25 £3.95

Donation to National

Christmas cards out now 126 x 126mm

£4.75

Autistic Society - Thank

10 cards £3.95

you!

Grand total

First name

13. Frosty Winter

10. Golden Wreath

Greeting: Season’s Greetings

Postcode

126 x 172mm

Email

Personalised overprinting call 01227 811 647 for is available on most an overprinting form of these designs, or order these online at www.autism.org.uk/christmas -cards

Post your order to: Gift Aid Declaration:

National Autistic Society,

(Tick to Gift Aid your

Appledown House, Barton

donation)

YES, I am a UK taxpayer and I wish the National Society to claim Gift Autistic Aid on all donations I have made in the past, present and future until I notify you otherwise.

I understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year, it is my responsibility to pay any difference.

Please notify the Charity if you want to cancel this declaration, change your name or full address, or no longer pay sufficient tax on your income or Capital Gains.

Business Park, New

DEBIT MY VISA / MASTERCARD

Start date:

Date:

Expiry date:

/ The National Autistic

/ Society is a charity registered

NAS_Brochure_2020_A5_8pp.indd

1

11. Playful Robins Quad Pack

“Impress Publishing” will appear on customer’s statements for credit/debit card payments.

WITH THE PURCHASE

/

Greeting: Merry Christmas and Happy New Year 109 x 109mm

ABOVE

/ 2020

12 cards of four designs

£4.25

Issue No:

in England and Wales

(269425) and in Scotland

(SC039427)

14. Reindeer Tree

Greeting: Merry Christmas and Happy New Year 126 x 126mm

10 cards £4.25

Email SMS To update your permissions, contact us on 0808 800 or at supportercare@n 1050 as.org.uk.

/ MAESTRO ACCOUNT

126 x 126mm

10 cards £3.95

silver foil

We ran our annual competition to find new, unique designs for our Christmas card range, which we put to a vote on social media.

Congratulations to the adult winner, Helen, on ‘Robin’ and to the children’s winner, Domanic, on ‘Silent Night’. We think they’re beautiful. Cards are on sale until 11 December, so get yours now at: 10 cards £4.25

CT1 3TE

Staying in touch

The National Autistic Society about our services, support, would like to keep in touch with you events, campaigns and only contact you in the fundraising. We’ll ways you want, and we’ll (See www.autism.org.u k/privacypolicy for furtherkeep your data safe. details.)

I agree to the National Autistic Society contacting in the following ways: me Post Phone

Cheque enclosed for the amount of £____________ payable to Autism UK Card: Visa/Masterca rd/Maestro (circle appropriate) £____________

I AUTHORISE YOU TO

Signature: My card number is:

Dover Road, Canterbury

Christmas cards 2020

Greeting: Season’s Greetings

copper glitter

Surname

Telephone

Robin

10 cards £3.95

Greeting: Season’s Greetings

Subtotal Postage & packaging

Address

12. Snowman and the

Greeting: Wishing you a Merry Christmas and a Happy New Year

126 x 126mm

9. Polar Bear

£3.95 £4.25

Personalised overprinting is available on most of these designs, call for an overprinting form 01227 811 647 or order these online at www.autism.org.uk/christm as-cards

15. Luxury Pack

This is one card each of all of this year’s new designs.

The cards in this pack have various greetings and sizes.

16 cards, one each of

16 designs £4.75

Thank you for your

support!

05/08/2020 16:19

Coronavirus leaves autistic people stranded

is here to transform eate a society that

ng support, ce for the 700,000 the UK, as well as bers and carers. ve turned to us at key in their lives, be it school or finding work.

roving public the difficulties many work closely with and government to sm-friendly spaces, mprove laws.

ut it is not good h to do to increase isolation and build on the spectrum. e it happen.

Society 2020. © National Autistic Society is a charity registered The National Autistic (269425) and in Scotland in England and Wales limited by guarantee (SC039427) and a company office (No.1205298), registered registered in England EC1V 1NG. Job No: XXXX_210820 393 City Road, London

Compared to the general public, autistic people in June and July were seven times more likely to be chronically lonely, according to our coronavirus survey.

Nine out of 10 autistic people worried about their mental health during lockdown. Seven in 10 parents said their child had difficulty understanding and completing school work.

The survey findings are revealed in our new report: Left stranded: the impact of coronavirus on autistic people and their families in the UK. If you took part in our survey, thank you for telling us about your experiences.

Those requiring support all of the time were significantly more affected by lockdown. Marion, a parent in Wales, told us: “Our son normally comes home to us every weekend and all holidays and comes with us on our holidays.

“Throughout this COVID lockdown, he has not been able to come home at all, and has found it very hard to cope with not being able to have his usual routine of coming home. We have been concerned about his mental wellbeing throughout this period.” ft Le d: strandeaviru We recommend that all four s the impact of coron their on autistic people and governments in the UK should create an families in the UK action plan to protect autistic people and their families in case of a second wave, covering social care, health, education, transport and shops.

Read the full report at www.autism.org.uk

www.autism.org.uk/christmas-cards

Save the date for the AGM

This year’s annual general meeting (AGM) will be held on Saturday 14 November.

We’re currently putting together a plan so we can host the event in line with the Government’s social distancing guidelines.

We’ll be in touch with more information soon – but, for now, please make a note of the date in your diary!

The Autism Show’s Webinar Week

If you want to get more information about autism and the approaches available, join The Autism Show’s Webinar Week from 1217 October. As you’re one of our members, you can get 20% off the ticket price if you enter the code NASW20 when buying your ticket. See more on page 44 and book your tickets at www.autismshow.co.uk Autumn 2020 5

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News

Norman is our new Vice President We are delighted to announce that Sir Norman Lamb is joining our charity in a voluntary role, as a Vice President.

He will support us by advising on our strategy and future plans, with a particular focus on campaigning for the rights of the 700,000 autistic people in the UK and their families.

Sir Norman has a long history of campaigning alongside our charity as Liberal Democrat MP for North Norfolk from 2001 to 2019, particularly around long diagnosis waiting times and the scandal of autistic people stuck

in mental health hospitals.

Parent and campaigner Isabelle Garnett said: “When my autistic son reached crisis point and was admitted to an inpatient unit that caused him to deteriorate catastrophically, Norman Lamb was a beacon of hope for our family. He has been a tireless champion for autistic people and/or people with learning disabilities throughout his political and his personal life.

“I couldn’t be more excited to hear he will now be sharing his insight and wisdom with the National Autistic Society.”

New training in autism for health and care staff In 2016, Oliver McGowan, a young healthy autistic man, died in hospital after receiving treatment against his and his parents’ wishes. Ever since, his mother Paula has been campaigning to make sure that NHS staff understand autism better and treat autistic people better as a result.

We are delighted that thanks to funding from Health Education England, our charity will help to develop the Oliver McGowan Mandatory Training in Learning Disability and Autism for health and care staff in England.

This training will mean that doctors, nurses, healthcare assistants, social workers and social care frontline staff will understand more about autism. Despite the legal duties in the Autism Act, too few staff have had this training up to now.

And as a result they haven’t understood how they need to change how they work to suit autistic people. Alongside Paula, we have helped to make the case that this training should include autism as well as learning disability.

And we will continue to campaign to make sure that the training is rolled out – so that the promises of the Autism Act are made a reality once and for all.

Caroline Stevens, Chief Executive, said: “We are delighted to contribute to this vital training, alongside the other partners.

“Autistic people and their families will rightly be at the centre of the programme and involved in every stage, from the design right through to the delivery and evaluation.”

6 Your Autism

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News

Celebrating our Home Hero fundraisers during lockdown Andrew

Hollie and Alfie

Barrington

We are both inspired and amazed by how many of our supporters have continued to fundraise for us – despite all the challenges they had to cope with during lockdown. Here are some of their amazing efforts.

Andrew planned his own 7k for 700k walk as part of World Autism Awareness Week in April. Putting his unique, colourful spin on it, Andrew sought out all the colours of the spectrum to photograph on his walk. “I wanted to show people how my autistic brain works,” he said. While raising funds and awareness, Andrew also created

a stunning photo display.

Hollie signed up to do the Jurassic Coast trek this summer, after her little boy Alfie’s autism diagnosis. When the original trek was cancelled, Hollie and her mum decided to hike 30km in their local area instead. Hollie wants to do the Jurassic Coast trek next year and continue her fundraising achievements.

Barrington is an autistic boardgame designer who creates games aimed at helping autistic people form a community. He shifted online during lockdown and held a week-

long stream-a-thon, playing games and streaming online twice a day for six hours at a time.

Between them, these three fabulous Home Heroes from Team Autism raised more than £1,500.

We are only able to do our work to transform lives, change attitudes and create a society that works for autistic people because of people raising funds for us.

You can be a Team Autism Home Hero too! For top tips and practical ways to raise vital funds and awareness safely from home, visit www.autism.org.uk/virtual

8 Your Autism

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News special

Our new Autism Inpatient Mental Health Service (England) Too many autistic people are trapped in mental health hospitals, sometimes for years. We have all heard too many stories of people who have been traumatised for years by these experiences.

We are now providing a new service to people in this situation and their families. Families and autistic people have helped us to design this service and it is funded by NHS England.

What is the Autism Inpatient Mental Health Service (England)?

The service offers advice and support to autistic people and their families in England when they or their loved one: ● have been detained in a mental health hospital; or ● are at imminent risk of detention or redetention.

The service:

● offers information, advice and support by phone or email ● explains mental health rights and entitlements in England to help prevent or challenge detention and secure the care and support autistic people need in their communities ● helps autistic people and their families explore their options and make informed decisions ● provides guidance and support on specific issues such as getting advocacy, finding suitable provision in the community, making a complaint or appealing against a decision ● works closely with and signposts to relevant advice and support within our wider contact centre.

We’ve only got funding now to run this service in England, but we are pushing for funding in other nations too and will let you know as soon as we can extend this help to people in Scotland, Wales and Northern Ireland.

Family feedback “I can’t thank you enough for all your support and, what literally felt at times, handholding since we were first in contact. At times, I was at my wits’ end with exhaustion and worry. You have been amazing.”

“Thank you so much for the recent call – apologies for talking 19 to the dozen, it’s a consequence of not being listened to for nine years!”

How do I get in contact?

Contact us by filling out our online enquiry form at www.autism.org.uk/inpatientsupport

Autumn 2020 9

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“The world is a strange place to navigate, but all these additional rules and procedures which constantly change are too much to bear�

Laura, 33, Doncaster

New rules, disrupted schedules and ever-changing guidance has seen too many autistic people and their families face unbearable anxiety as the UK has come out of lockdown. It doesn’t have to be like this. The right advice and support can help in these difficult times.

Please support autistic people during this time by donating today at www.autism.org.uk/appeal National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427).

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My diagnosis

Why being diagnosed at 44 has been life-changing

s

Kelly Grainger’s two children were diagnosed as autistic, and then he was too Last year was a pivotal one for me and my family. Both of my children were diagnosed with autism and, during that process, it became clear I shared many traits.

I have been successful in life and my career for 44 years, so why get a diagnosis now? In truth, I have always felt a bit different – the way I thought and felt (or not). I had this nagging feeling there was something more to me and to life. My wife, Hester, and I discussed whether I should get diagnosed. With the knowledge that there was something that could make sense of it all, I decided to see if I was autistic.

I had the assessments and spoke to the psychologist, who confirmed I am autistic.

The news came with an overriding feeling of relief that there was something that explained why I do, say and feel the things I do – a new understanding of myself.

Read more

Find out more about disclosing your autism diagnosis at work at www.autism.org.uk/employment Read more about Kelly at www.perfectlyautistic.co.uk and www.hudia.co.uk Want to share your diagnosis story here?

Email YourAutismMag@nas.org.uk

Then came the question of when I should tell others about my diagnosis – or if I even should. Mental health among men, in my experience, is seen as a weakness. I was worried this was the same with autism.

If it’s not physically visible, then it’s not taken seriously. Since deciding to reveal my diagnosis, I’ve had a mixed response.

One guy laughed: “Really? You don’t look autistic!” How do I even answer that?

That being said, my diagnosis has been extremely positive. It has been reassuring for our children to know that their daddy understands what they are going through.

We call ourselves the ‘A’ team.

From a work perspective, there have also been big changes. After nearly 23 years in the corporate world, I decided to say goodbye. I have been masking all these years and just didn’t want to continue. So Hester and I set up our own consultancy business, helping companies with PR, social media and website design.

I have never felt that I had a purpose (outside of my family); perhaps that’s an effect of my autism. Since the diagnosis, I feel I have found one – sharing my story, driving awareness and supporting others through their diagnosis. That is why we have set up a new website, Perfectly Autistic, to provide an understanding network. I want to share with others that knowing I am autistic is hugely positive for me. I finally feel the freedom to be who I am, without having to hide in plain sight.

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Our story

© Elainea Emmott Photography

Cooking up a storm Wesley and his mum Elainea take great joy in cooking together. Here they explain how it helps them both Wesley writes:

I never thought about food much when I was younger. I took enjoyment out of baking simple things, but that was it. I didn’t take to cooking at the same time as baking, which was more straightforward and required more patience, so it was easier for me to grasp. Baking is relaxing, but it can be stressful. My love of baking gave me a sense of direction. It was fun to make things when I was younger, and bring them into school for bake sales.

I got more passionate about food when I got an ice cream maker for my birthday, because I was interested in a recipe in one of my cookbooks. I was worried I wasn’t going to use it at first, but I found myself using it quite a bit – mum even got me a cookbook just for ice cream. Lemon and ricotta, raspberry and white chocolate. I found it fun thinking about the flavours and how to make the custard, adding different components to give it more subtle flavours.

I occasionally worked at a patisserie as a sous chef, helping the chefs with anything they needed, such as cutting fruit, grating cheese or cleaning at the end of the day. It was my first time working in a professional kitchen, and – although I wasn’t doing nearly as much as the chefs I was assisting – it still felt busy, and it was an experience I still value.

It was when mum took up food photography that we both became more interested in cooking as a whole, giving us more reasons to get creative and experiment with what we cooked and baked, doing more together.

Cooking meant that we connected when we were away from each other, talking about food, cooking together over FaceTime, filling him up with love Elainea

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Our story

During summer 2019, mum and I volunteered at a homeless kitchen for further experience.

We baked things to bring in for desserts, but these couldn’t be too experimental, because these cakes had to be served to large numbers of people and incorporate fruit. We both had to think of cakes people would generally enjoy while being part of their ‘five a day’.

We enjoyed it, even though it was hard work, and we learned a lot about costings and seasonality, and about inspiring and feeding a large number of people – we would regularly cook a three-course meal for more than 100.

A sense of direction, mixed with patience and a delicious end result, definitely helped me mentally Wesley

My school life

You don’t immediately notice how autism affects you, or that your way of thinking and processing is different from others. But those differences are there, and it’s still difficult to articulate what exactly they are. Confusion comes a lot easier to me than others – at times, it feels like everything is confusing.

If I lose focus, even for a moment, it becomes easy to get lost, so I often had a teaching assistant to help me in primary and secondary school, even if I didn’t always want that help.

It reminded me that I was different, and accepting that help, and grasping why it was necessary, is something I struggled with.

In primary school and a good part of secondary school, I didn’t really have an understanding of what autism was – nor can I remember when exactly I came to that understanding, even though, according to my mum, I was diagnosed at around five. I felt lonely much of the time in secondary school; not many people cared to talk to me and I couldn’t hold down long conversations.

University

I went to university in Eastbourne to study journalism, and had to be away from home for the longest time. It was difficult, but I was prepared for it. There weren’t many people I was close with, so I felt lonely there too. There wasn’t much for me to do, because most of the things I enjoyed were over in other campuses.

So, I did most things by myself, throwing myself into things like baking and writing. A sense of direction, mixed with patience and a delicious end result, definitely helped me mentally.

Elainea writes:

It was one of the hardest decisions I had to make in my life – having Wesley go to university and living away from me. But, in my heart, I knew it would make him into what he wanted so passionately to be: a writer. I spent endless sleepless nights thinking if I could only keep him strong for a week while being a train ride away – to fill him up with love and confidence, and to be there for him on FaceTime during the week, and cook with him Autumn 2020 13

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Our story

when he got lonely. I desperately wanted him to have a great university experience, and make friends and have a good time. Wesley has always been passionate about writing.

When I found out this was his special thing, I had to progress it and push him to be the best writer he could be, and that meant him moving away to study journalism at university.

Cooking meant we were able to connect while apart – talking about food, cooking together over FaceTime, filling him up with love. And it was worth it. Wesley is an extremely good cook. Cooking takes you to places; it is solitary, but also involves cooking for others and sharing the experience. Food can be an expression of our love and is a great way to distract yourself if you’ve had a bad day. We might open up about making pasta or just eat in silence and enjoy the pleasure of taste. Food brings out conversations – and sometimes, when you don’t want to talk, but just eat, that’s OK too.

Cooking together

I enjoy cooking with Wesley so much. He is a master baker and I wanted him to enter Bake

Off with me. He didn’t, but watched me bake like crazy and then got the enthusiasm and drive. He is more exact than I am; his measures are perfect. He reads recipes, while I am more inventive, trying new things and being more experimental.

We have become more social together, as we have started a supper club called Our Seat, Our Table. Wesley cooks, coming in and out, talking to guests when he is comfortable.

Cooking is a great way to get involved, because you have to concentrate and work on your own, but also as part of a team. Working at the homeless charity and food bank was incredible for us. I could only cook with Wes at the weekend because of work, but I’d drop him off in a taxi with the bakes and then he worked with the team, prepping and serving the food.

It was pretty much his show, and he excelled, feeding very vulnerable homeless clients and forming relationships with them, while serving them food professionally.

Recently, I was on a TV cookery competition called Crazy Delicious, judged by Heston Blumenthal. The cooking was intense and I could not have done it without Wesley’s support and love. He tasted everything and calmed me down, as I was super-nervous.

He came through a very lonely experience at university and, now, he works as a freelance writer and research assistant for other writers, as well as working on his book. Wesley is very focused, and cooking allows him to relax and for us to have fun together with flavour, as well as to interact with people through the supper club and the food we create.

I am so proud of my son, and cooking continues to strengthen our relationship and enjoyment with each other. I got him back as a writer and a brilliant cook.

For details on Elainea and Welsey’s cooking classes and supper club, go to www. elaineaemmottphotography. com or follow on instagram @ emmottelainea Read more about them at www.autism.org.uk/stories

14 Your Autism

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Applications open for the postgraduate certificate in autism and Asperger syndrome Online course | 19-23 October 2020 The postgraduate certificate in autism and Asperger syndrome is run with Sheffield Hallam University.

Course outcomes • Develop an in-depth understanding of autism and Asperger syndrome and some of the associated issues.

• See examples of appropriate professional practice across all disciplines.

• Gain insight into how to provide support for autistic people.

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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Interview

“She always seemed to know what music is for” We chatted to musician James Cook, author of In her room. The book is about how he uses music to communicate with his autistic daughter Emily, who is non-verbal

How did the book start off?

I was a new father, a stay-at-home dad, and Emily and I had a lot of time together. As someone who was a bit jaded with their record collection, this idea came to me of just listening to new music for a year while keeping a record of Emily’s milestones. She was nearly one, undiagnosed, and I was thinking I’d have a diary full of milestones that happen in a year; it would be a great voyage of discovery. Of course, things didn’t quite go as planned.

The reason I wrote the book was to describe what it felt like as a parent of an autistic child. It was to give people going through the same situation some sort of comfort

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that you can come out the other side and think very differently from how you did at the start.

The focus of In her room is how you use music as a way to communicate with Emily.

Can you give an example?

Emily was born in the UK and we moved to Germany to have a fresh start. She’d just started walking, but with her newfound sense of freedom, she seemed to interact with us a lot less. She seemed quite content to wander around the new apartment ignoring us. She still didn’t respond to her name or any pointing. I really wanted to connect with her, to say “I’m here, you know”.

So, I started playing songs on acoustic guitar; I started playing Wish you were here by Pink Floyd.

Emily doesn’t really do toys, they frustrate her, but she’d be bashing a toy and, if I was playing the song, her frustration and anxiety with the toy seemed to decrease. I thought, is this a form of communication here?

She seemed to be ignoring me, but then I noticed that she wasn’t. She’d give me a little checking glance, a little smile, and I’d think “you are listening; you are paying attention; I was looking in all the wrong places!”

So, once I latched onto that, music became her favourite thing.

they were doing, the writers of that song! Once you sing that 100 times, it becomes like a mantra; you feel sleep chemicals working on you as well. What I didn’t know at that time was that the music created a safe space. The things that were troubling Emily, the barrage of sensory information she was getting that she couldn’t process properly, the music was a way of lessening it a bit. The example I always give is trying to do your tax return when there’s a car alarm going off in the street. Then it switches off and you think “what a relief”.

Why is music so helpful for many autistic people?

Music creates order from chaos.

It creates a sense of wellbeing,

Do you have any tips for other parents who would like to interest their child in music?

Give it a chance, but proceed with caution because of the sensory issues. Just start quietly. Everything is music; tapping a biro in time is music; a shaker is music – anyone can do that. See what works.

In one scene, you describe Emily crying at 3am and how singing Row, row, row your boat is the only thing that calms her – why do you think that is?

All parents sing to a distressed child – it’s just instinctive. In Row your boat, the shape of the melody is like a wave going up gently, cresting, and then going back to where it started. They knew what

where the edge is taken off sensory overload. This creates a calm space – an environment where learning can take place.

All music has repetitive patterns.

It’s the linked sound sequences that neurotypical and neurodivergent brains seize upon – especially the neurodivergent brain, because there’s more chaos out there than there is order. Emily’s non-verbal.

She always seemed to know what music is for; she’d always smile as if saying, “I know”. When speaking to her, it was like you’d given her some very difficult maths problem to solve. Music can be understood without having to be interpreted; it’s understood that a song is just a sound event that has a beginning, middle and end. When an autistic child hears this, it’s a very good way of increasing attention span, because attention is just anticipation – you’re just anticipating what happens next within the song. It all comes from how the brain latches on; it snaps to attention to a repetitive rhythm.

James was originally a musician and songwriter for the band Flamingoes

You mention realising Emily “is just wired differently from neurotypical children”. You say the autism diagnosis “has given Emily an identity, a place in the world”. What helped you come to this point?

At the start of the book, I ask: who will she be? I think all parents think

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that of their kid; it’s a very human thing. When we were in the bewildering phase of not knowing where it was going, that confused us, who she was going to be. Then I had a kind of conversion – and it really was that dramatic. I read a book called In a different key, which is a history of autism, with lots of case studies, and I saw how many thousands of people had been here before. So I felt less alone and I felt

it gave Emily this identity. That was the big turning point in trying to understand her.

In the diagnosis process, the one really depressing thing is that you stop enjoying being a parent for a bit. It’s a very brief phase, thankfully. You feel like you have misunderstood your child, that you don’t know who they are anymore – when, in fact, all the changes are taking place in the parent. The

Extract from In her room The one constant during this period are the songs I play for Emily on guitar. We’re always in the living room, her wandering around among her scattered toys. First, I run the plectrum over the strings on the headstock, just above the nut. It makes a tinkly, musical box-like sound that always stops her in her tracks. Then a slow smile emerges. Is this a type of communication? I wonder. I’m trying to get through to her, to reach her. She still doesn’t respond when I call her name. I’m not sure she knows she has a name, or what one is. I feel helpless when I repeat the word, over and over – 15, 20 times – and she doesn’t react.

I start, as usual, with Pink Floyd’s Wish you were here. She walks around happily, smiling as the different sections of the song unfold. Once again, I note she seems to engage with music more than people. Why? I’m suddenly aware of the obvious irony in the song’s title. She doesn’t seem to be properly ‘here’, present, much of the time. How I wish she was. But I also notice that she may have been bashing an object disconsolately, or stumbling from toy to toy, but when I start playing, her concentration seems to improve. If she’s showing frustration with an object, it all but disappears.

And, studying her, I realise she is aware of me. She is ‘here’ – while the music plays, at least. Periodically, I will catch a small, sideways checking glance from her in my direction, accompanied by a sly smile, which I encourage. ‘Do you like this one, Bear?’ I ask. ‘Here comes our verse – the one about the lost souls in the fishbowl.’ It’s as if the song is an invisible thread between us. A lifeline.

In her room: How music helped me connect with my autistic daughter is out now (Lagom, £11.99).

child was the same from the start; always beautifully autistic, getting on with their own life. It’s the parent who’s had to go through this. It’s mercifully brief, but I found In a different key really helped. We started to power ahead after that.

Throughout the book, Emily is such a happy, smiley child, who gets on well at nursery.

How is she doing now?

She’s getting on fine. She’s at a kindergarten and she’ll be there another year, until she’s nearly seven. They are incredibly supportive. When I take her there, she’s like a celebrity. We walk through the crowds of kids and they’re all saying “Emily, Emily”. And Emily behaves like a superstar, when you see them walking on the red carpet and not looking, as if she’s wearing shades. The thing is, I realise why she’s doing that. She’s gone from the calm car ride, then suddenly there’s all this sensory information, and she’s just got her head down. You know how there’s always a child at nursery who’s a mother hen? Emily’s got her little friend who looks out for her.

It’s beautiful, the situation now; you kind of wish it could continue – but all kids have to go to a new school eventually. She got lucky with this one.

Emily’s favourite songs: Ticket to ride Moon river Blue moon

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Banking your energy Georgina Maric finds out how energy accounting can help you manage your energy and your stress levels

Managing your energy levels can be challenging when you are autistic, but energy accounting can make a positive difference.

“Energy accounting is a visual system where you note down things that withdraw energy from you,” says Lorraine MacAlister, Autism Training Consultant for our charity. “Then, you make sure you are putting activities back in that will replenish that energy, keeping your ‘bank account’ balanced and in credit.”

Energy accounting is a concept

by Maja Toudal, an autistic woman, and is based on the premise that everyday activities and tasks can

be a real energy drain on autistic people – even if you enjoy those activities – potentially causing high stress levels. Autistic people may find it essential to build specific activities or time into their daily lives to replenish this energy.

“Identify what activities drain you of energy,” says Lorraine.

“It could be spending time with other people, doing a Skype call, having literacy at school, coping with a supply teacher for one lesson, the wrong food on a lunch plate; it will be different things for each individual. What other people think of as small things could be

a massive energy withdrawal for an autistic person.

“This concept works in such a way that it is suitable for any age, from a very young child upwards, and for people with any level of understanding, because a parent or supporter can build the concept into the person’s daily life on their behalf, if needed.

“For teenagers, it can give them more autonomy in terms of understanding their own autism.

They can advocate for themselves and recognise that certain things take a lot more energy and will need to be replenished.”

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“It makes it easier to keep my energy bank in credit” Ella Tabb, 41, is a disability content creator and has her own YouTube channel, Purple Ella I started using energy accounting four years ago. The idea of an energy bank account – or a phone battery that runs out – is very clear to me. I use it every day to plan my daily tasks and commitments. When I first started, I wrote two lists – one for energy-depleting activities, such as socialising and telephone conversations, and one for energyrestoring activities, including spending time with my assistance dog, Coco, and hobbies, such as Lego.

It makes it easier to find a balance between both types of activity and keep my energy bank in credit.

Like many autistic people, I also have a physical

disability, so what might restore from an autistic perspective may be physically draining for me – I have to balance both.

Before I started, I tended to do many energy-depleting activities one after another, not realising this was a problem. I would experience meltdowns, shutdowns and, ultimately, burnout. Now, I am able to balance my activities and I experience those consequences less often. It’s not perfect – life gets in the way – but it certainly helps.

Both of my autistic children struggle with negative consequences when they get overloaded, so I give them energy-restoring activities every day. I’m teaching them about the technique so that, as they grow older, they’ll be able to find balance in how they structure their lives.

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Autism in BAME communities – where are we now? © Paul McKenzie Photography

Venessa Bobb reflects on the impact of COVID-19 and Black Lives Matter, and what needs to happen to improve support for black, Asian and minority ethnic (BAME) families

Venessa’s son Nathaniel

COVID-19, social distancing and self-isolation aggressively stopped services for autistic people and their families. Education provisions, local authorities, social services and government were put to the test. Through lockdown, I experienced the uncertainty of not knowing how to support my autistic teenagers.

The battle I and many other families face is greater now. Our mental wellbeing has been pushed to breaking point and we all need help, and to be heard.

I would like to make this clear: I cannot speak for the BAME communities, but give an account of my personal experiences during lockdown and what families have shared with me.

In 2008, my middle child, Nathaniel (then aged five), was diagnosed with autism and ADHD, and learning difficulties and severe receptive expressive language in 2019.

Between 2017 and 2018, my youngest, Michaela (14), was diagnosed with autism, ADHD, benign rolandic epilepsy and severe receptive expressive language. My oldest, Lashawna (19), is diagnosed with moderate language difficulties and has a two-year-old son, Kairo.

In many ways, 2020 has been positive for me, because I was able to use my passion for

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connecting and bringing together all communities and autistic communities via social media.

The pandemic certainly created a stronger force via digital media. National news appeared to ignore the autistic voice, with few mentions of the disability community being caught up in appalling conditions in COVID-19.

National and international news hit us with concerns over the lack of recorded data on the number of COVID-19 deaths within BAME communities (but this is old news for anything to do with recorded data), and – as usual – there was a lack of conversation and acknowledgment of those within the BAME learning disabilities and/or autism community.

Saying all lives matter is true; unfortunately, not all lives do matter for the many voices who have been missing at the table.

bereavement, families left without resources for their child – before lockdown. In particular, black parents are concerned about police brutality and ‘stop and search’, while wider communities may never comprehend the additional struggles if it does not affect their groups. Police and emergency services need to be trained on autism, especially with all the negative news around the police in the media.

Connecting people

Over the past four months, A2ndvoice CIC and Lambeth Autism Group have held numerous autism online sessions. I have spoken in the BAME community about my own struggles around autism.

Many BAME families and dual-heritage families have had to deal with tricky questions

Autism in BAME communities

BAME parents tend to be less likely to acknowledge autism, and the lack of culturally sensitive support continues within their own communities, as families and friends add to the problem. On top of this is the disproportionate effect of COVID-19 on BAME communities, while government and local services are non-existent.

In areas across the UK, many BAME families will be left out of decision-making. Isolation, cultural-biased views and cultural incompetence have destroyed the livelihoods of BAME autistic people. Poor services and communities are working in isolation when we need to work together to bridge the gap.

Autism, race and ethnicity need to be addressed by unpicking and resolving the negative impact across communities.

The death of George Floyd caused a rippling effect, bringing race and divide to the forefront. Online support has resulted in an increase in black and Asian communities seeking advice, help and information. Many local services were unable to meet the needs of BAME communities – the relevant support for those with additional languages, counselling and befriending services for those experiencing domestic violence and

Venessa Bobb is Chair of our Lambeth Branch and Founder of A2ndvoice, a voluntary support group run by parents/carers living and caring for a child or adult on the autism spectrum, raising awareness and understanding from different perspectives, outreaching to BAME communities, and tackling the taboos and myths around autism.

Read more from Venessa at twitter.com/A2ndVoice and at www.a2ndvoice.com

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around racism and why people are angry. It’s these kinds of topics that need to be spoken about – but by people who are able to speak for themselves and not third hand.

Hosting Autism BAME online support for families has been a success in connecting the African, Caribbean, Indian, Spanish and other communities. I have struggled to get help for myself and felt constantly misunderstood by other parents at times – but through my own journey, I am bringing people together and that is good. Working collectively and understanding people’s differences, to be able to have healthy discussions about race without assumptions and not denying there are issues for autistic people and their families.

The lack of representation, and understanding, of the different cultural needs and wants, family traditions, language barriers, faith beliefs, loss of translation, communication and sharing of information, all contribute to BAME families being denied a diagnosis, or having one delayed. Many local autism/SEND groups will probably feel uncomfortable talking about race and see it as of no importance. But if you don’t understand the cultural needs and wants of a black or Asian family, it can lead to relationship breakdown, distrust and misinformation by misinterpretation.

Over the years, I have attended many autism events and parent consultations that I found via Twitter and my local Lambeth Autism Group. I was often the only black parent to attend these events, through which I connected with many autistic people and specialists. Things are changing slowly, but they need to speed up. BAME and poor white families have complained on many occasions of groups avoiding discussions around race, violence and abuse. These issues need to be included and addressed.

Depending on the geographic areas, many BAME families may have resorted to travelling out of their local area to get support, or to going online to connect with other families who have similar cultural views. It’s fantastic news that the National Autistic Society will be looking into how to reach out to the autistic

If the cultural needs of a black or Asian family are not understood, it can lead to relationship breakdown, distrust and misinformation

BAME communities with the help of other specialists and BAME autistic people. Finally, there is something that will help many BAME families nationally.

Schools need to invest in cultural and ethnic books (and not just for annual celebrations), assistive technology, communication tools, and black and Asian autistic specialists’ cultural awareness programmes – otherwise, we’ll stay missing from the table.

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Back-to-school tips Autistic teenager Siena Castellon, author of The spectrum girl’s survival guide: how to grow up awesome and autistic, gives her top tips for teenage girls on returning to school after lockdown Months of online learning have made returning to school after lockdown a daunting experience, especially as no-one knew what kind of school environment we would be returning to. Autistic girls face additional challenges that make returning to school more difficult. Below is advice that addresses some of the concerns you may have and that I hope will help ease you or your child’s transition back to school.

Returning to school after lockdown

One of the drawbacks of an exceptionally

long break from school is that it makes returning to the hustle and bustle even more challenging than usual. Being sheltered from the outside world is likely to have decreased our tolerance for noise, crowds, smells and bright lights drastically.

The best way to mentally prepare yourself for the sensory overloads caused by returning to the school environment is to acknowledge that it will take some time to build up your sensory tolerances.

Developing healthy friendships

As a teenage autistic girl, I often struggled to develop healthy friendships at school.

I was overly eager to have friends and tended to believe what I was told, so I often became friends with people who took advantage of me. These friendships started off well, but gradually descended into abusive relationships. For example,

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one so-called friend expected me to do her homework and lend her money, but refused to be seen with me at school.

You should focus on having true friendships with people who value and respect you. Remember that actions speak louder than words. If you are friends with someone who makes you feel bad about yourself, or who takes advantage of you, don’t be afraid to walk away. You deserve to be friends with people who are kind, supportive and wish the best for you.

Asking for help

One of the areas I really struggled with in school was asking for help. My focus was on staying under the radar. The idea of approaching a teacher for help and bringing unnecessary attention to myself terrified me. In hindsight, however, I could have prevented some situations from escalating if I had asked for help sooner.

For example, we were given a group assignment in geography. The members of my team refused to participate, so I did the entire project on my own. Although the project got an A*, our teacher gave us a zero/fail for group work. If I were in this situation again, I would ask my group to contribute. If repeated requests failed, I would ask the teacher for advice on how to handle the situation.

If, like me, you are reluctant to ask for help, try asking what you would say to a friend who asked for your advice. We often give better advice to others than ourselves.

Siena Castellon is a 17-year-old neurodiversity advocate, who is autistic, dyslexic, dyspraxic and has ADHD. When she was 13, Siena created www.qlmentoring. com, a website that supports students with special educational needs (SEN). Siena is also the bestselling author of The spectrum girl’s survival guide: how to grow up awesome and autistic.

Read more @QLMentoring

Competition We have two copies of The spectrum girl’s survival guide: how to grow up awesome and autistic to give away to members, and Siena is going to sign them for the winners.

For a chance of winning, email your details to YourAutismMag@nas.org.uk by 15 October, quoting ‘Spectrum Girl’.

The winners will be announced in the next issue.

Asking for help is not a weakness – it’s a sign of strength and maturity.

Managing your mental health

When my mental health is suffering, everything else goes downhill too. My sensory sensitivities skyrocket, my sleep pattern gets disrupted, my appetite is affected and I become distanced from the people closest to me. To avoid this, I try to be conscious of my mental health.

When I notice that my anxiety levels are increasing, I try to identify the cause and practise self-care. For example, during lockdown, I found that social media became very dark and negative, and was causing me stress and anxiety. So, I took a break from social media and limited the time I spent reading and watching the news. It really helped.

One of the factors that may affect your mental health in the months to come is the uncertainty caused by the pandemic.

Although it’s hard, I think the best way to cope is to recognise that, for now, we will have to accept that uncertainty is a way of life, and it’s OK if it takes us longer to adapt to new situations.

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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.

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Readers to the rescue!

Post your problems or answers on Facebook at National Autistic Society or email YourAutismMag@nas.org.uk

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

Q

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 6ft 3in young man? Mary

You could try buying cheap, durable shoes such as Crocs.

Reward him every day he doesn’t break his shoes to help him understand the difference between positive and negative behaviours.

Good luck! Rachel

A

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

You know your son and it’s important to find out more about the reason why he is shredding his shoes and clothes. You mention that it happens when the mood takes him but is there any particular pattern or trigger to indicate why it happens? Does it happen when he’s very stressed for example? If so, there might be alternative things he can do when stressed.

Shredding his clothes and shoes might also be fulfilling a sensory need. We’ve had calls to the Helpline from other parents whose children rip their clothes because they enjoy the sensation. Can you get some scrap fabrics

Help me next!

iStock .com / stockcam

A

that he could use instead to fulfil this sensory need? You could also ask for an assessment of your son’s sensory needs from an occupational therapist. They will be able to look at what’s going on and provide advice tailored to your son. Dani, Helpline Adviser Rachel wins a copy of Supporting positive behaviour in intellectual disabilities and autism: practical strategies for addressing challenging behaviour by Tony Osgood

● Visit www.autism.org.uk/behaviour

My son, four, is autistic and has limited speech. Christmas is hard as he won’t open presents and doesn’t understand the day. I see his cousins hanging up stockings and feel sad that my son doesn’t have the same magical feelings. How do others make Christmas special for their child?

Anonymous, via our online community

Send us your solutions for a chance to win a copy of The ice-cream sundae guide to autism: an interactive kids’ book for understanding autism by Debby Elley and Tori Houghton.

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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Identity

Doubly different: being autistic and biracial Grace Liu, autistic writer, illustrator and musician, on how growing up in a minority affects your sense of identity and belonging I’ve had people stare at me for being different since the day I was born – literally. My mum, originally from Kent, spent a few years working in Taiwan, where she married my father and had me.

She was one of the very few white people for miles and, at the time of my birth, all the Taiwanese nurses wanted to stay and watch a mixed-race baby being born to a white woman. But that was only the beginning!

From when I was very little, I struggled with eye contact and social interaction, and would hyper-focus on my personal 30 Your Autism

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interests. My unusual traits were initially put down to the fact that I was already “different”. In Taiwan, I was half-British. When Mum moved back to the UK with me (aged four), suddenly I was half-Taiwanese in a single-parent family. A lot of people assumed my difficulties connecting with others were down to bad parenting. My headmaster thought my mum wasn’t letting me watch enough TV. I even had to undress for a school doctor so they could check for signs of physical abuse. My response? “But it’s rude to show someone your knickers!”

A few years later, at a new primary school, I was diagnosed with Asperger syndrome. Initially, I was oblivious to how different I was, but became more self-conscious as a teenager. Kids would laugh at me for not knowing how to interact with them, or just ignore me altogether. Others would patronise me. I remember one person who constantly felt the need to ask if I was all right, and another who said “I feel sorry for Grace because of that thing she has”.

On top of that, people at secondary school made a much bigger deal about my race than they had at primary school. Boys kept saying they wanted to “have my Chinese babies”. One called me a racist name, most likely to impress his mates. One was even hostile to me because of my race and didn’t want me anywhere near him.

Because I’m biracial and autistic, I have gone through life feeling like a bit of a spectacle. It’s as if all the manners that new people usually use around each other go out of the window as soon as they meet someone who is different. Telling people I’m autistic has elicited a wide range of reactions – such as,

“I bet you’re good at IT/maths/ science”; or “aww, bless you” as if I were a toddler who had fallen over; and even, “you’re lucky to have a job”. Charming!

Then there are people who cannot resist saying “ni hao” or “konichiwa” to me in public, because they assume I speak Chinese or Japanese. Some mean well, others do it for a laugh. I’ve been praised for how well I speak English, when I don’t speak anything else. I live in England; I only speak English, and I’m only in touch with my English family. Yet some people only

focus on me being half-Taiwanese.

Being in more than one minority means I’ve spent most of my life having to explain my identity and struggles to other people. I’m prone to feeling like an outsider, as if I don’t really belong. Even now, I have moments when I wish I could just “be” without being scrutinised, laughed at or corrected.

When people stereotype me, even when they mean well, it feels alienating, when I just want them to see me as an individual. Because I am more than a stereotype – and I need people to remember that.

Grace at kindergarten in Taiwan

If you are going through some of these issues, take a look at our online community at community.autism.org.uk Read more from Grace on her blog unwrittengrace. wordpress.com and at www.autism.org.uk/stories Grace also talks about identity on the Thoughty Auti podcast at www.youtube.com/ watch?v=YH833O8Wfqg

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Advice

Coping with unexpected change Coronavirus has caused huge change and uncertainty, which we were unable to prepare for.

Our Helpline Adviser Dani offers some guidance on how to create structure when a person isn’t fully able to prepare for change, and outlines ways of managing anxiety during these times Many autistic people find that coping with change can cause a lot of stress and anxiety. Much of the advice people receive around this involves doing advance preparation. This can be really helpful, but is not always possible. So, what can you do when a change is unexpected?

Find the similarities

When unexpected change happens, it is

easy to feel like everything is different and overwhelmingly uncertain. A good activity if this is how you are feeling can be to make a list of the key points that are not changing in your life. This could be family members, the people you can talk to, or elements of your daily routine that can stay the same.

You could even think about your favourite things, which may not have changed.

For example, TV shows or films you enjoy watching, games you like to play, or music to which you enjoy listening.

Adding perspective

Once the change has happened, it can be helpful to identify what coping strategies can be used to manage anxiety. You can consider whether you have been in a similar situation before – not necessarily the same

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event, but something that made you feel the same way. Try to remember what was helpful then, and see if it would be relevant and useful to try doing that again.

You might also want to rate your anxiety or negative feelings on a scale of 1-10, with 10 being the highest level of anxiety or stress you could imagine being at, and one being totally relaxed. If you can place yourself somewhere in that range, ask yourself what you need to do to help you move to the next number down. For example, if you place your anxiety at seven, it may not be realistic to jump straight from there to a one or a two. Instead, ignore the lower numbers for the moment and just focus on moving down to a six. From there, you can repeat this to continue moving down the steps.

It could be valuable to write down your solutions somewhere you can access them quickly, because it is easy to forget what you were planning at the point of feeling very anxious. Some people find it helpful to stick a message on their fridge, or write a note in their phone. It may be beneficial to keep this note updated as you find new strategies that were particularly rewarding, or make notes on what hasn’t worked and why.

Focus on what you can control

It may be worthwhile to identify whether or not what is going on is within your control. It can be easy to feel anxious about things that are not within your control, and there is no magic answer to stopping negative thoughts about these things. Some people find it useful to identify what is within their control in the situation and focus on creating methods to cope with those elements.

What is going on in the wider world is often outside of our control, so it can be more effective to think about what is going on in your immediate environment.

For example, the layout and changes made at supermarkets have been stressful for many people in recent months. While

Tracy’s story “I have a fantastic, bright boy; he’s 15 and in the top set in every subject at school.

He is also a talented musician, who plays four instruments.

My son has Asperger syndrome. Life was very difficult when he was younger, but with patience and a supportive school, he was quite settled.

That was until the day schools were told to close. My son’s world fell apart. He couldn’t cope, and it didn’t make any difference what we said or did. He had meltdown upon meltdown.

He couldn’t eat; he and I sat up at night, maybe getting two hours’ sleep. He wouldn’t engage with anything. The most distressing thing was that he couldn’t understand why he felt like this, and kept saying so. He usually has some brilliant coping strategies that we’ve worked on for years.

Eventually, I got him to engage with some of his teachers online and participate in lessons.

At week four, I persuaded him to come on a bike ride. It’s the one activity he loves to do outside – it helps him relax. This became part of the daily routine. After six weeks, he began to have some music lessons online, which gave him a bit of focus to practise between lessons. Although he still wasn’t sleeping or eating much, we managed to get a bit of routine established.

Now, he gets up and does his school lessons, and will practise his instruments. He eats at the same time every day. That is all he can cope with; any suggestions of change or the possibility of going back to school are too much for him.

My son is exceptionally clever at schoolwork.

People have said I just need to make him do things because he’s bright enough to understand. They don’t get that it’s nothing to do with being bright; it’s the ability to cope with change and the unknown. Our family’s bubble burst on the day of lockdown. It has made me realise how brilliantly he does normally, but that he will always need support and a routine.”

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you may not be able to control whether the supermarket is changing and how people get around (one-way systems, closing certain areas), it may be helpful to identify what you can do. Can you contact your local supermarket, or check their website and social media accounts, for a description of what they have put in place?

Can you call them before you leave home, to check what the queues are like? Is there a better time of day that you could go?

You will have been spending more time at home lately. Although you may not be able to control this, are there things within your control that can be put in place to manage this? For example, you can make conscious choices about your environment and daily schedule, all of which can give you a stronger feeling of managing the situation.

Manage input

It may also be valuable to limit the input you receive about things that are out of your control or causing anxiety. Recently, it has been very easy to spend a lot of time seeing things in the media and talking to other people about COVID-19. While it can be very helpful to keep up to date with changes, it is not always beneficial to make this a central focus. For many people, this information makes them feel very anxious, and managing how much time is spent focusing on this can be tricky, but powerful.

If you find that reading all of this information makes you feel very anxious, it may be worthwhile to ‘switch off’ from this kind of input for a while. Some people find that allocating a small, set amount of time each day – or every few days – to look at the updates and keep on top of them can be helpful.

If you know that this kind of input makes you feel anxious, you could choose to arrange a calming activity from your coping methods to use immediately afterwards.

Further support

It’s completely natural to feel anxious when big changes happen, and that anxiety can

iStock .com / lechatnoir

Advice

be even worse when it’s something we didn’t expect. If you are feeling extremely worried, and it is affecting your day-today life, it may be worthwhile to speak to someone who can offer more tailored solutions for you. This could be your family and friends, who may know you very well and have some ideas on what works for you. You may also want to consider speaking to your GP, or a counsellor who has experience of working with autistic people, who can help you to identify ways to manage extreme anxiety.

For more information: Preparing for change: www.autism. org.uk/dealing-with-change Managing anxiety: www.autism. org.uk/anxiety Our Online Community: community. autism.org.uk Brain in Hand: www.autism.org.uk/ brain-in-hand Our autumn appeal focuses on dealing with change and the challenges of coming out of lockdown. Read more at: www.autism.org.uk/appeal

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Meet the team

“As their favourite places closed, we created replicas” Meet Wendy Brisland and Abbie Williams – aka ‘Team Wabby’ – Deputy Managers at our Neath Autism Centre, a daytime service. We chatted about their work and cooking up a storm in a McDonald’s drive-thru replica during lockdown…

What inspired you to become a support worker?

Wendy: I ran a taxi firm for 18 years and was a foster carer. I cared for a young autistic lady, which gave me a better understanding of autism. I began as a relief support worker and worked my way up.

Abbie Williams

Abbie: My cousin is autistic and I wanted to understand how he sees the world. I also began as a relief support worker, and fell in love with the National Autistic Society.

What does a working day involve?

Our day always starts with a cuppa. As managers, we ensure the rotas are covered and check in with our staff, to make sure they have all the resources for their sessions. We then create our day’s agenda.

Are you interested in becoming a support worker? Find out more at www.autism.org.uk/ support-worker

Wendy Brisland

Our tasks include supervisions, organising staff training and attending meetings.

Our staff provide education sessions.

Indoor activities include carpentry, pottery, cooking and textiles. Our outdoor curriculum offers golf, trampolining, swimming, hiking, and developing social skills by shopping and visiting cafes.

How have you been supporting your residents through the lockdown?

As some of their favourite places closed, we’ve created replicas. Our day service in Longford Court remained open.

The McDonald’s drive-thru replica is incredible! How did you create it?

Wendy had the idea and we contacted our local McDonald’s. Staff members Kayla Davies and Louise Penny made uniforms and menus, and organised the food. When the oven broke, Louise stood over the hob ensuring each chip was cooked to perfection. This led to a weekly event.

Any hobbies?

Wendy: Spending time with my children and grandchildren. We like visiting our town centre and going on walks.

Abbie: Pre-coronavirus, my friends and I would do karaoke – I can sing a mean Proud Mary [by American rock band Creedence Clearwater Revival]!

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Notebook

Everything you need to read, do or see

A kind of spark AUTHOR: Elle McNicoll PUBLISHER: Knights Of Media PRICE: £6.99 VERDICT: An uplifting story from the perspective of an autistic girl

Set in the quiet Scottish town of Juniper, Elle McNicoll’s bewitching tale of self-acceptance, friendship and sisterhood mixes the mundane with the mystical…

The novel is told from the perspective of Addie Darrow, an 11-year-old autistic girl with an affinity for sharks. Throughout the story, we get a really vivid picture of what sensory and social overload is like for Addie. The author often uses colours to describe Addie’s feelings, giving the reader insight into her unique way of seeing the world.

At school, Addie learns about the witch trials that took place in Juniper centuries ago. She is horrified to discover that three women from her town were tried and executed for supposedly practising witchcraft.

Addie sets out on a mission to honour the memories of these so-called ‘witches’ and challenge the townspeople to accept Juniper’s dark past.

As the story unfolds, the novel draws parallels between Addie’s story and that of the witches.

Using Addie as a mouthpiece, the writer urges us to think about how we treat people who are ‘different’, and to consider the consequences of that treatment, even in the present day.

Despite the heavy subject matter, A kind of spark is an uplifting read. The difficult topics are often balanced out by moments of dialoguedriven humour and Addie’s determination to make a positive difference.

Hermione Cameron, Content Officer, National Autistic Society

Aspergers in society: a documentary by Thomas Henley

www.youtube.com/ watch?v=eLpcPOSFfNE VERDICT: An intriguing insight into autism and mental health Made by Thomas Henley, an autistic biomedical sciences graduate and a taekwondo gold medallist, the film poses the question: why do so many autistic people experience mental health difficulties?

Thomas shares his experience of autism and interviews autistic people, across a range of ages and backgrounds, about what life is like for them.

Highlights include an interview with Thomas’s taekwondo coach, Rick Simpson, on how sport can help autistic people develop their social skills.

The documentary also looks at how social isolation, bullying and discrimination can negatively impact autistic people’s mental health. It also delves into the idea of what ‘normal’ looks like. As one interviewee puts it: “If society would stop expecting us to behave to a standard they think is ‘normal’, and accepted us the way we are, none of the things about us they see as being ‘different’ would matter.”

Hermione Cameron, Content Officer, National Autistic Society

Giveaway

We have two copies of A kind of spark, by Elle McNicoll, to give away to members. For a chance of winning the book, email your details to YourAutismMag@nas.org.uk by 15 October, quoting ‘Spark’. The winners will be announced in the next issue.

The winners of last issue’s competition are Alix Extence and Marco Chardi. They each get a copy of Autism and me, by Haia Ironside.

Congratulations!

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Notebook

A vision of empathy

AUTHOR: David Martin, writing as Dunkle Deed PUBLISHER: Skoon-Bah Publishing PRICE: £6.99 VERDICT: Strikingly illustrated children’s book to increase autism understanding A vision of empathy tells the story of Noah and Sadey on a school trip to the zoo. Sadey doesn’t understand why Noah sometimes flaps his hands and doesn’t pay attention to her. But with the help of the animals, Sadey gets a glimpse inside Noah’s world.

The book very effectively introduces children to widely misunderstood autistic traits, showing the world as Noah sees it. Sadey, for instance, comes to understand “Noah lived in an intense world every single day. Every sight, every sound, every smell – they would all merge and hit him like a ton of bricks”.

David Martin has tremendous knowledge of autism – he has worked as a support worker for autistic people for nearly 20 years. The book is inspired by his son Hayden, who was diagnosed at three years old.

Suzanne Westbury, Editor, Your Autism magazine

Our six favourite… Back-to-school items

1

Hex Bracelet

and how to hold a pencil.

A grip will give more control and reduce tired hands. From £3.99 at www.amazon.co.uk

For sensory chewers, the bracelet is subtle and accessible at all times if worn on the wrist. £6.99 from www.haliarose. co.uk/collections/hex

5

Squishy mesh ball

Perfect for stressful moments when you need something to squeeze; the sensory feedback from squeezing can have a great calming effect.

Available for £3.24 at www.amazon.co.uk

2

Ear defenders

Schools are noisy places, and children who have noise sensitivity may struggle to focus. The Edz Kidz Ear Defenders, £10.95, can be found at www.amazon.co.uk

3

Sensory-friendly uniform

Easy-dressing school uniform designed for children with sensory issues and/or difficulty

dressing; you can get label-free school uniform from www. marksandspencer.com

6

4

Is your child nonverbal or struggling with communication?

The Picture Exchange

Pencil grips

For children who are still mastering handwriting

Communication System is designed for autistic children. Go to www. pecs-unitedkingdom.com.

The communication book is £18.70.

Chosen by Jade Page, who has two autistic sons, aged four and six. www.theautismpage. com

PECS Communication Book

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

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in association with

12 - 17 October 2020

WEBINAR WEEK Join us for six days and 50 live sessions of online learning 12 - 13 October Learn from the UK’s leading autism professionals, researchers and campaigners. Topics include: managing change and transitions in education; understanding distressed behaviour and minimising the triggers; ways to help children and young people cope with anxiety; sleep and mental health; and understanding the needs of children with multiple diagnosis.

14 - 15 October Learn practical strategies and approaches for the home and classroom. This programme includes: navigating the SEN system; reducing the impact of sensory challenges; home based routines to help your autistic child with daily life and to learn new skills; supporting children with autism in a mainstream classroom; and creating welcoming environments for autistic girls.

16 - 17 October Learn from the experiences of adults on the autism spectrum.

Some of the subjects covered include: experiences and challenges at school; benefits of late diagnosis: self-awareness and selfacceptance; thriving as an autistic woman; special interests and how they shape our mental health; and should you disclose your autism at work?

Webinar content may be subject to change.

Tickets cost just £29.99 for parents/family carers or £49.99 for professionals.

Price includes access to recordings of all webinars for 30 days.

Book your tickets today at

Organised by

www.autismshow.co.uk

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CONFERENCES

Autism Autumn 2020_44-45 Ads.indd 44

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Advertorial

By Dale Krause, Success Coach, Harrow School Online

Online schooling could help your child thrive Online schooling can provide a welcoming environment for an autistic young person, as they study from the comfort of their own home with fewer distractions than are often found in a traditional classroom. Harrow School Online is particularly suitable as it offers them truly expert teaching in a calm, accessible environment away from the hustle and bustle of a physical school.

We are incredibly proud to announce the opening of Harrow School Online this September.

Built on the excellence of Harrow School, we bring a world-leading A-level education to girls and boys around the world. We are a fully online school, using digital learning technologies that are tried and tested. Self-study lessons can be reviewed at a time and pace

Autism Autumn 2020_44-45 Ads.indd 45

determined by the pupil, and all live teacher-led lessons are recorded and can be watched back when desired.

Each pupil is assigned a Success Coach, who meets with them in regular coaching sessions to help them develop and work towards study, university and career goals.

For students who have a SEND, their Success Coach will be a SEND specialist who can provide support to pupils with a wide range of needs.

The nature of the support will be determined carefully, through consultation with the pupil and their parents. This may include individual lessons, group study skills lessons or reasonable adjustments made by teachers in the live lessons. As with a traditional school, we can apply for your son or daughter to benefit from

Their individuality can be recognised, and they will be nurtured and allowed to flourish access arrangements in their A-level examinations.

Every child is unique, and we welcome all pupils who would thrive in an academically minded international community. Here at Harrow School Online your son or daughter will find an environment where their individuality can be recognised, and they will be nurtured and allowed to flourish. www.harrowschoolonline.org

28/08/2020 11:37

Snapshot

I’m a… racing driver Jack Ferguson, 15, has started his kart-racing career in high gear!

Jack is a kart racing driver, and part of Team Racing with Autism (RWA). Last year, he went the extra mile, taking home the silver medal in the Daytona Autumn Endurance, a six-hour race.

Jack was born with a hole in his heart and was told by doctors that he wouldn’t be able to compete in sports. He was diagnosed as autistic at six years old. Jack was having trouble in school and would often fall out with classmates and teachers. He also has multiple epiphyseal dysplasia, a genetic arthritic condition in every joint in his body.

Despite these challenges, Jack is a funloving person with a great sense of humour.

When he was younger, he would tell people that the scar on his chest (from heart surgery) was a wound from a great white shark. Fortunately, Jack was able to save the day by biting the shark back!

Jack discovered his love of cars as a toddler, while watching Formula One with his father. Initially, kart racing was a challenge for Jack. His first experiences behind the wheel were somewhat wobbly,

but his drive to improve carried him through. Jack tells us he thinks motorracing is “the ultimate sport” and he wants to prove that autistic people are just as capable as non-autistic people.

At the age of 13, Jack won the Anglia Karting Cadet Championship. Since then, he has gone on to place highly in several other races, including the Daytona Autumn Endurance. His goal is to get other autistic people involved in kart racing. If things go well, he will be taking part in a 24-hour race in Milton Keynes this October, as part of RWA. Jack’s father, Pete – who is also on the autism spectrum – is a big supporter of his son. Before each race, he tells Jack: “You have the heart of a lion and the spirit of a gladiator, so go out there and prove it!”

It seems Jack is on the right track and has an incredible career ahead of him.

We would like to congratulate him on his remarkable achievements and wish him all the best for the future.

Would you like to be featured here? Let us know your achievements at YourAutismMag@nas.org.uk Read more at www.jackstaracing.com 46 Your Autism

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Your Autism, the award-winning quarterly magazine, full of stories, advice and information about autism.

To advertise in the next issue please contact: Hoby Abdel on 0203 859 7098 or hoby.abdel@jamespembrokemedia.co.uk

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