YOUR Spring 2022
All about masking
Tips on how to manage it
Children and autism How to tell your child about their diagnosis
Plus
Celebrating our 60th anniversary Artist David Braunsberg on attending our first school
World Autism Acceptance Week, disclosing autism at work, and safeguarding
YOUR Spring 2022 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk
Exploring masking
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I’m a podcaster
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Contributors Hermione Cameron HEAD OFFICE National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk SUPPORTER CARE TEAM 0808 800 1050 membership@nas.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@jamespembroke media.co.uk SUBSCRIPTIONS Only available to members of the National Autistic Society. To join, visit www.autism.org.uk DESIGN AND PRODUCTION CPL (Cambridge Publishers Ltd) 01223 378000 www.cpl.co.uk 1 Cambridge Technopark, Newmarket Road, Cambridge CB5 8PB PRINT Warners Midlands 01778 391000 National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG © Your Autism magazine Spring Vol 56, No 1 National Autistic Society ISSN 2055-0413 The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a website does not necessarily imply that our charity endorses or supports the group or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.
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60 years of our charity
Contents What’s new?
A round-up of the latest news
World Autism Acceptance Week
04 08
My diagnosis
11
An extraordinary 60 years
12
Safeguarding strategies
16
We celebrate the founding of our charity with David’s story
Why autistic people can be vulnerable to abuse
Interview
Colin Larkworthy on making history with the COVID vaccine
20
22
We explore different types of masking, and the risk of burnout
Readers to the rescue
How you can get involved
Former journalist Simon Thacker
“It’s important we have spaces to de-mask”
Disclosing autism at work
26 32
How to deal with loneliness
Student Emily Katy gives her advice
Talking to your child
34
Notebook
39
about their autism diagnosis
Things to read, do and see
I’m a... podcaster
Lloyd Beck, founder of Check It Tv
42,237 people signed our education petition to
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invest in autistic children’s futures”
04
Spring 2022 3
What’s new?
Get in touch!
Our round-up of the latest news and views
42,237 sign our education petition Thanks to everyone who signed our education petition. We were calling for the Government to invest in autistic children’s futures in the upcoming review on special educational needs and disabilities (SEND). An amazing 42,237 people signed the petition. We know that parents have long been fighting for change. In our School report, three-quarters of the parents we spoke to said their autistic child’s school place does not fully meet their needs, while a quarter of parents said they had waited more than three years to receive support for their child.
Tim Nicholls, Head of Policy at the National Autistic Society, said: “Parents shouldn’t be left exhausted by a system that is broken. The SEND review is our chance to improve things. “The Government needs to identify the councils and schools where
autistic children are struggling and give them enough resources to provide support. “Thank you to everyone who signed the petition to send Nadhim Zahawi [Education Secretary] a clear message that he has the power to save autistic children’s futures.”
Read more at autism.org.uk/ schoolreport21
Government plans for adult social care The Government has published its new Adult Social Care Reform White Paper for reforming the sector in England. The policies that should support you or a family member if you use care services include: ● At least £300m to help councils offer a wider variety of supported housing options ● Support to help more autistic people and people with learning disabilities into employment, including a new Local Supported Employment scheme ● £70m to improve and increase the range of care and support services available ● Help for councils to deliver community care through a new £30m Innovative Models of Care Programme 4 Your Autism
●E xpanding the provision of respite care and breaks for unpaid carers. There will be a new Carer’s Leave entitlement of five days of unpaid leave per year. We welcome these commitments. However, we are concerned that the white paper doesn’t provide the urgent funding the system needs right now. Also, it does not go far enough to tackle staff shortages and pay, or gaps in support. Our research suggests that two in three autistic adults do not get the support they need. We’ll keep calling on the Government to give councils enough funding to ensure autistic adults get that support. Read the white paper at bit.ly/heart-of-care
News
Making job centres autism-friendly Fifteen Jobcentre Plus sites are trialling a new framework, designed by the National Autistic Society, to help them become more inclusive to autistic people. The framework was developed by our Autism Accreditation team, with input from autistic people. It explores how best to support autistic people into employment. This includes ensuring job centre appointments take place in the right environment. For example, some autistic people experience sensory overload in busy, bright or noisy environments. As part of the pilot, job centre staff will be asked to carry out appointments with customers who experience this in different rooms. Recommendations include quiet rooms with
good natural light. Work coaches will also help employers to understand the additional needs of autistic employees. This aims to create more opportunities for autistic jobseekers in settings where they can thrive. If successful, the framework could be rolled out to more job centres in England, Scotland and Wales, benefiting thousands of autistic people. Christine Flintoft-Smith, Head of Autism Accreditation, said: “We want all job centre staff to understand autism and make the changes to the support and environment that autistic people need. Ultimately, we hope this will help more autistic people to find jobs they want and deserve.” Find out more at bit.ly/jobcentres
Join our autism insight panels
It is vital that all our work is informed by the views of autistic people and their families. Join our autism insight panels to help shape our work and future campaigns. Find out more and sign up at autism.org.uk/insight
Watch our AGM online
Our AGM was held virtually on 27 November 2021, with addresses from our Chair, Dr Carol Homden, and Chief Executive, Caroline Stevens. Edward Caddle, Trustee and Chair of the Plans and Resources Committee also gave a presentation on the charity’s financial performance. This was Carol’s final AGM after 10 years as Chair of Trustees, and she introduced her successor, Stephen Ladyman. We heard about his passion for our charity and he introduced us to three new trustees: Olga Clayton, George Davidson and Sheila Davies. Watch the recording of the meeting and review the minutes and members’ questions at autism.org.uk/agm. Your password to access the recording is AGM2021.
Autism training for health staff We are delighted to be part of the trial to help develop the Oliver McGowan Mandatory Training in Learning Disability and Autism for health and social care workers. In sessions led or co-facilitated by autistic adults over the past few months, we have trained more than 1,300 health and care staff, and feedback has been really positive. The final training package will be rolled out to all health and care staff across England. Read more at autism.org.uk/health-training
Spring 2022 5
Diary dates What to do and where to go
28 March to 3 April 2022
World Autism Acceptance Week (see pages 8 and 9 for details)
10-11 June 2022, Manchester 17-18 June 2022, London 24-25 June 2022, Birmingham The Autism Show
The Autism Show, in association with the National Autistic Society, is returning to London, Birmingham and Manchester this June, packed with informative talks, one-to-one clinics and hundreds of specialist products and services. Highlights this year include broadcasters Melanie Sykes and Dr Carrie Grant speaking in the Autism Matters Theatre, the innovative Cubbie Sensory Hub, and the interactive Rebound Therapy feature in partnership with Playgrade Trampolines. If you’re looking for information and direction pre- or post-diagnosis, are facing daily challenges, or approaching significant transition points, then The Autism Show can help you. You can also visit our stand at the front of the event. As a member, you get a 10% discount on tickets to The Autism Show. Just quote NASM22 when you book your tickets at autismshow.co.uk
19 June 2022
London to Brighton Cycle Challenge
This 54-mile bike ride is a great way to see the sights of the south of England, all the way from London to Brighton. We would love you to join Team Autism and raise vital funds for our work, while also raising awareness. Find out more at autism.org.uk/brighton
22 May 2022
Abseil for autism
Are you an adrenaline junkie, or simply love a challenge? Then our Abseil for autism event is for you! You’ll experience the most spectacular views of London, and be raising money to help transform lives, change attitudes and create a society that works for autistic people. Sign up at autism.org.uk/abseil 6 Your Autism
Join Team Autism Dangle in free space, 80 metres above the ground! With incredible views of London, our epic abseil of the ArcelorMittal Orbit is not to be missed. Sunday 22 May 2022
www.autism.org.uk/abseil
Our brand new London to Brighton Cycle Challenge takes you from the city to the south coast in a day. This 54-mile endurance bike ride starts at Clapham Common, London and ends with a huge celebration on Brighton’s beach front. Great for both beginners and experienced cyclists. Sunday 19 June 2022
Sign up today and help us transform lives and change attitudes. We can’t wait to welcome you to the team. The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
www.autism.org.uk/londontobrighton
Events
Join us for World Autism Acceptance Week World Autism Acceptance Week, 28 March-3 April 2022, is just days away. From our new Super 60 Challenge to Anne Hegerty’s Spectrum Quiz, we’ve got plenty of exciting things planned. Read on to find out what’s in store, and how you can get involved
8 Your Autism
Events
What’s in a name?
Thanks to feedback from autistic people and their families, we’ve changed the name of this important week from ‘World Autism Awareness Week’ to ‘World Autism Acceptance Week’. It may seem like a small change, but it makes a big difference to the message behind our campaign. We are listening to the voices of autistic people, and putting their experiences at the centre of our work. While it is important for people to be aware of autism, it’s more important for autistic people to be accepted and celebrated for who they are. That way they can get the support they need and deserve. We recognise that awareness alone is not enough, and we hope the new name reflects this aim. We’d also like to say a big thank you to everyone who shared their thoughts on this year’s campaign.
What’s on? Super 60 Challenge – wherever and whenever works for you
The National Autistic Society turned 60 this January! We’ve come such a long way since 1962, when our founders gathered around a kitchen table to fight for the rights of autistic people. It’s been an extraordinary 60 years, and with your help, we can make the next 60 even more extraordinary. With this in mind, we’ve launched our new Super 60 Challenge. You can choose an activity such as running, cycling, cooking, playing the kazoo or even learning something new, and you can put your own six, 60 or even 600-themed spin on it. For instance, you could run 6km over six days, sing six songs over six days, or learn a new word a day for 60 days. Get your friends and family to sponsor you. Plus, by taking on the Super 60 Challenge, you’ll get a copy of our Super 60 pack – filled with 60-themed fundraising ideas, and extraordinary stories from the past 60 years since our charity began. We’ll send you a free t-shirt, certificate and medal for taking part, too.
Sign up today and get your free fundraising information pack at autism.org.uk/super-60 Need inspiration? We’ve put together a collection of 60 fabulous fundraising ideas. Just visit our website and find some that suit you: autism.org.uk/super-60-challenges
Anne Hegerty’s Spectrum Quiz
You can test your general knowledge with the Spectrum Quiz and raise funds for our work. This year, we’ve got an extra 60-themed round. So, if you’re an expert on 60s music or 60s films, or anything else from that decade, this could be your time to shine. You can take on the quiz solo or team up with friends and family and tackle the questions together.
Resources for your child’s school
We have free downloadable resources for all age groups to help students learn about autism. Let your child’s teachers know and offer them these resources especially for the week. Visit autism.org.uk/waaw for more information and ideas. We wish you a very happy World Autism Acceptance Week.
World Autism Acceptance Wee 28 March – 3 Ap k ril 2022
Your
0 6 r e p u S ge n e l l a Chnfo pack i
Everything you nee d to join Christine McGuinness and raise some vital cash du ring
World Autism Acceptance Wee k
Spring 2022 9
My diagnosis
“I got the word ‘autism’ in my head – I couldn’t get it out” Former journalist Simon Thacker was diagnosed when he was 39 I’ve felt like an outsider my whole life. After years of bullying, depression, counselling, hypnotherapy, two nervous breakdowns and redundancy, I started a new job. My new colleagues and the company as a whole were so supportive. Before that, I was a journalist and never could understand why some stories were deemed ‘newsworthy’. Now I know why! After watching a programme about an autistic woman trying to get back into work, it finally clicked. I’d always thought of myself as prone to depression. But what if there was something bigger underneath these feelings? I got the word ‘autism’ in my head. I couldn’t get it out. It took nearly three years to be diagnosed and it’s been a lengthy journey. I just had to get my question answered – was I autistic? Being diagnosed as autistic a few months before my 40th birthday wasn’t a big
For more information on getting a diagnosis, visit autism.org.uk/ adult-diagnosis Want to share your or your child’s diagnosis story? Email YourAutismMag@nas.org.uk
revelation. Frankly, I’d have been amazed if the result had come back negative – and so would my friends. So where does this leave me? I imagined crying with gratitude at my assessment. Instead, I just felt numb and then, over the next few days, alternated between furious anger and unbelievable sadness. I had flashbacks of myself as a child, clearly struggling to understand a world that made very little sense, as if everyone else had been issued a set of rules apart from me. University was especially difficult. Parties were ordeals, groups were anxiety-inducing and other people were impossible mysteries. They still are. But now at least I know why I’m the way I am. For years, my inner narrative read that my failure to make and maintain friends and fit into the workplace made me a failure in general. And it’s simply not true. I also realise now that not everyone wants to discuss my latest special interest as much as me, and it can still be difficult to stop me in mid-flow. If you’re reading this and wondering whether to pursue a diagnosis, my advice is – go for it. Nobody knows you like yourself. A diagnosis would help answer the questions in your mind. Being diagnosed may not change your life − it didn’t mine − but it may be just what you need to help you accept who you are and move on. Spring 2022 11
Real life
An extraordinary 60 years... let’s make the next 60 count! It’s 60 years since a group of parents of autistic children founded our charity to fight for autistic people’s rights. One of the first children we helped was David Braunsberg, who attended our first school. He is now a commercial artist. This is his story My time with Sybil Elgar – 1963 to 1968
I started at Sybil Elgar’s school in St John’s Wood, London, when I was just four years old. I could not talk or communicate when I started. I was mostly taught one-to-one, but sometimes I was joined by another autistic boy, Joe Allison. Mrs Elgar was very loving and caring, but also firm. Within months, I began to talk and understand what was said to me. The school then moved to Ealing where several other children joined us. Apart from Mrs Elgar, two other teachers taught me: Mrs Hepworth and Mrs Sinha. There was a playground, but I didn’t mix with the other children and often played on my own. Mrs Elgar helped me with my communication, talking with me, helping me to speak and to interact with children and teachers. She taught me arithmetic, language (using picture books) and how to write. Without her, as an adult, I would not have been so able to communicate or do the things most people normally do and take for granted. I would not have come so far and would have been unable to lead an independent life. I also think she did 12 Your Autism
a fantastic job to help the other autistic pupils to communicate. I found changes in routine difficult and, sensing this, became ‘naughty’. Mrs Elgar helped me to know when I was not behaving well by correcting me just when I became anxious. In doing so, she taught me what was right and wrong, and why. For instance, when I was about eight years old, we were on a school trip to the south coast. I was on the pier above a man swimming. I threw a pebble, but luckily it missed the man. I only threw the pebble ‘for the fun of it’, not to aim for the man. But Mrs Elgar was right there by my side and explained that I could have hit the man with the pebble. A child of that age would normally know the possible consequence, but I was still not able
Real life
A mother’s memories We asked David’s mother, Hannelore, for her memories of the 1960s
David as a young boy with Sybil Elgar
How were autistic children viewed in the 1960s? Autism was not recognised or understood at that time. American psychiatrists believed it was the fault of the parents. We saw a psychiatrist at University College Hospital, who suggested David be placed in some kind of institution. I did not do this as it would have broken him. How did you find out about Sybil Elgar’s school? I was given the name of a doctor at King’s College Hospital, who suggested we should contact Mrs Elgar. What was different about Sybil Elgar’s approach to teaching? She started by teaching children individually and then taught them in groups of two or three. She had an interest in children with difficulties in communicating. How did Sybil Elgar develop David’s language and communication skills? I have no idea how she did it! She had some way of making them understand her.
to grasp consequences of actions like this. So Mrs Elgar told me and corrected me on what I did, and I still remember that. Schools such as Mrs Elgar’s are important in teaching autistic children individually or in very small groups. Pupils need to start before the age of five or they miss out. Catching up is very difficult. Without Mrs Elgar, I would not have developed so well, and I’ll always be grateful to her for enabling me to articulate myself today.
Becoming an artist
I left Sybil Elgar’s school at age nine, going on to a primary school ‘for delicate children’ (as it was termed then). But some of the other pupils were aggressive and I was often bullied. When we moved to Edinburgh, I was given
What would have happened if Sybil Elgar hadn’t started her school? Where would David have gone? Before David went to Sybil Elgar’s school he was ‘taught’ by a private teacher, recommended by the psychiatrist at University College Hospital. She had no idea how to cope with autistic children and David was very unhappy there. I would not have known what to do without Mrs Elgar. We’ve come a long way in our understanding of autism since the 1960s – what’s the biggest change you’ve seen? Many people now have some knowledge about autism and make adjustments for it.
Spring 2022 13
Real life
special schooling before attending a primary school. After about two years we returned to London where, on the advice of child psychiatrist Sir Michael Rutter, I went to a mainstream secondary school and achieved O Level passes in English, art, and maths. The teachers and headmistress said I had a gift for art and advised me to go to the London College of Furniture (now the London Metropolitan University) where, after three years, I attained the Diploma in Art and Design. Having attended courses given by the well-known silk artist Mary Day, I now make hand-painted silk scarves and silk jewellery, as well as gifts and greeting cards with my original designs. I also make etchings and prints. My textiles and etchings have been bought by several well-known members of the public, including a member of the British Royal Family. My inspiration for designs comes from natural forms: trees, flowers, birds and reflections in water, sunsets, architecture, man-made objects, textures, paintings and sculpture. I often experiment with innovative combinations of hues. The world is full of beautiful and surprising images that greet the eye. I have more recently volunteered at The Holy Cross Centre Trust, running small art groups, and helping out with colouring, design and drawing. I enjoyed interacting with other people while also producing my own designs. My hobbies include Nordic Walking as a group, activity walks in the countryside, visits to the river Thames with an autistic friend, visits to restaurants and museums, cooking, and tapestry work. I am currently attending a still life drawing and painting course at an art school.
60 years of progress
Since the 1960s, I have seen far more attention paid to teaching autistic children basic life skills one-to-one or in small groups. Psychiatrists do not ‘institutionalise’ autistic children as they once did. Whereas autistic children were ‘locked away’, they are now 14 Your Autism
David’s inspiration for designs comes from natural forms
allowed to go to school, learn, and be praised for their abilities, gifts, and talents. As adults, autistic people can fit into the workplace, as long as there is some support given. Autism is regarded as a disability less and less, and is seen more for positive attributes, such as attention to detail, thoroughness and being reliable. Many autistic adults can lead quite independent lives and contribute much to society as a whole. There is far more respect for autistic people nowadays.
David’s artwork is available on his website: davidbraunsberg.co.uk
Real life
Six milestones in our first 60 years In 1962, a group of parents with autistic children set up what would go on to become the National Autistic Society. They began our fight for autistic people’s rights. At the time, there was no provision for autistic children, who were often diagnosed with childhood schizophrenia and sent to institutions. In 1965, we opened the world’s first school specifically for autistic children, headed by the visionary educationalist Sybil Elgar (where David went). She led the way in teaching autistic children and helping them to reach their full potential. In 1974, Sybil Elgar and parents of children at the school opened the UK’s first residential service for autistic adults, helping them to feel more independent and part of society. At the time, many autistic adults were often locked away in institutions. In 1979, Dr Lorna Wing and Dr Judith Gould developed the idea that autism is a spectrum with degrees of impact and that far more people were autistic than previously thought. There is still much more to do. But without their groundbreaking work, millions of children and adults worldwide would probably not have a diagnosis today or receive the support they so desperately need.
“They said our children were ineducable” Michael Baron, one of our founders
In 1991, we opened the UK’s first diagnosis centre, led by Dr Wing and Dr Gould. The centre has set the standard in good diagnosis practice. However, waiting times in many parts of the UK are still far too long and many professionals don’t fully understand autism, leading to misdiagnosis, particularly of women and girls. In 2009, we helped get the Autism Act passed in England, meaning local and national government have to provide support to autistic people. We also campaigned for similar legislation and strategies in Northern Ireland, Scotland and Wales. We have always been the leading source of information, advice and guidance for autistic people and their families in the UK. This started with our first hand-typed Communication magazine – now Your Autism magazine. In 2021, more than 60 million people had watched our Too Much Information public understanding film, and we have 4.5 million visitors to our website a year. Thank you so much for being part of our journey. We’ve come a long way, but there is still so much to do.
Spring 2022 15
Safety
Safeguarding strategies Carly Jones MBE looks at why autistic people can be vulnerable to abuse, and shares her advice on protecting your loved ones When I was finally diagnosed as autistic by the National Autistic Society’s Lorna Wing Centre at 32, life made sense for the first time. I sent a bunch of flowers to Dr Gould who diagnosed me, with a card thanking her for the first day of the rest of my life, because it was. It was the first day I knew why I had found life so very challenging and, perhaps more importantly, the last day of blaming myself. People often ask me why on earth I’d seek a diagnosis so late; after all I wasn’t in school anymore and didn’t need the educational support. I had (on the surface) managed to get to 32 without being diagnosed, had a family, a home and a job. What people didn’t see behind the surface however was a life riddled with vulnerability,
toxic relationships, safeguarding issues and social naivety. After my diagnosis, I felt a huge relief but also, as a mum to autistic daughters, that relief was quickly replaced with fear. I pondered if all the vulnerabilities and negative experiences I had survived in my life were due to being autistic. As my girls are also autistic, does that mean their life will follow the same trajectory? I started aiming my advocacy work more towards the safeguarding aspect. I asked autistic people in an anonymous online survey if they’d experienced abuse before their diagnosis. Ninety-one per cent reported they had. This is a shocking statistic. If you are a parent reading this, please let me tell you that I asked the autistic community if AFTER diagnosis/support they had experienced abuse. Seventy-three per cent replied that they had either experienced no abuse or were able to report and stop abuse in a timely way. The very fact you are reading this and supporting the autistic person in your life means they should hopefully be in that safer statistic. But how can we offer support, advice and strategies when everything out there is generally designed without autistic people in mind? How many safeguarding strategies take into account autistic people’s differences in experiencing the world, the issues with jargon, banter, face blindness?
Why autistic people can be vulnerable Carly Jones MBE
16 Your Autism
So, what does being autistic have to do with such vulnerability to abuse? Many people will
iStock.com / damircudic
Safety
assume at this point I am referring only to the autistic people who perhaps are less verbal – autistic people who have higher support needs. I am, of course, referring to the entire spectrum. The ability to speak seamlessly in no way correlates to the ability to communicate seamlessly. Autistic people have differences and challenges in recognising and reporting abuse. To recognise abuse, you have to understand your own personal, mental and physical boundaries. If you are an autistic person who has acute hearing but every time you’d begged someone to turn the TV or music down, they’d said “it’s not even loud!”, you start to question your own perspective. In relationships when someone replies, “but I didn’t even hurt you”, you’d be more likely to accept it if, for your entire life, you’ve been told your way of experiencing the world is wrong. What about autistic people with higher personal care needs? For example, a 13-year-
To recognise abuse, you have to understand your own personal, mental and physical boundaries old might need assistance and care in the bathroom and have confused personal boundaries. How do we teach autistic young people the difference between care and abuse? There’s more to it than that though. Our very diagnosis means that we can struggle with social imagination. Sometimes, social imagination is confused with traditional imagination – such as playing with dolls, writing scripts, enjoying fiction. In fact, many autistic people are great artists, actors, poets and the like. Social imagination, however, is being able to somewhat predict, in a social situation or discussion, what may happen next. The Spring 2022 17
iStock.com / Riska
Safety
Giveaway
We have a copy of Carly’s book, Safeguarding autistic girls: Strategies for professionals, to give away to one lucky member. For your chance to be in the draw, email your details to YourAutismMag@nas.org.uk by 20 April, quoting ‘Safeguarding’. The winner will be announced in the next issue.
consequence of what’s said back and forth. This is what I struggle with still at almost 40 years old, and what many autistic people struggle with. So how can you ask for help if you have differences in your social imagination neurotype? To ask for help, you need to know what is happening is wrong. You need to know someone else − a safe person − who doesn’t already know what’s happening. You need to communicate with the safe person and finally know there is an advantageous consequence for doing so. Not as easy as it looks. How can you ask for help if you don’t know what help is?
A simple strategy to help
I’ve written a book called Safeguarding autistic girls: strategies for professionals. It covers grooming, sexual abuse, hospital care abuse, bullying, the justice system 18 Your Autism
misunderstandings, drink and drug addiction and much more. For every subject, there are autistic-specific strategies to match. I cannot add all the strategies in this article because of space. But if I had one strategy that I’ve found works the best, it would be to ask your autistic loved one, “what was the best thing and the worst thing that happened to you today?” Simply asking “how was school?” may result in someone who had a great day at school but was mugged on the way home simply replying “school was great!” Because you only asked about school, not the journey home. Join in yourself. Each day, share the best and the worst thing that happened to you that day. Do this every day, talking about the little things, so when big things occur, it feels normal to share and to seamlessly ask for help.
Read our guide Safeguarding young people on the autism spectrum for more advice. autism.org.uk/safeguarding
Exceptional Schools for Young People with Autism
Alderwasley Hall School & Sixth Form, Derbyshire Aran Hall School, Dolgellau Bladon House School, Staffordshire Maple View School, Derby Pegasus School, Derbyshire Rowden House School, Herefordshire
SENADgroup Senadgroup.com Tel: 01332 378840
Work
“I am so proud that we all made history with the COVID-19 Oxford University AstraZeneca vaccine” Colin Larkworthy, Clinical Trials Support Officer at the Jenner Institute, begins a new series in which we interview autistic people about their jobs or volunteering roles
What does your work at the Jenner Institute involve?
My main job is working with the clinical team, supporting clinical trials. I deal with clinic appointments, making sure the bloods taken are sent to our lab, where my colleagues perform their routine tests. I also deal with data entry of the blood reports, and lots of filing, meetings and computer work.
What was your role working with the COVID-19 vaccine team?
I helped do the data entry and blood reports for the team and for the Oxford Vaccine Centre, under the expertise of Professor Sir Andrew Pollard, Professor Dame Sarah Gilbert and Professor Adrian Hill, KBE. I was liaising with Emma Plested, one of the programme managers, making sure all the data was accurate.
What do you enjoy most about your job?
Colin enjoys the routine and structure of his role at the institute 20 Your Autism
Studying the diseases that the Jenner Institute is researching against and knowing how we can improve people’s lives by creating vaccines. Oh, and lots of data entry.
Work
What’s your proudest achievement?
My proudest achievement actually isn’t mine – it’s everyone’s here at the Jenner Institute. I am so proud that we all made history with the COVID-19 Oxford University/ AstraZeneca vaccine, although there is a lot more to do. This won’t be the last pandemic or epidemic.
What’s the most challenging part of your job?
Communicating what I need, and dealing with changes if they are too fast. I have strategies to calm me, like my noise-cancelling headset to block out some of the noisy environment. I am very lucky to have great support from my manager, Dr Hazel Morrison, who has been instrumental in me staying here, and not getting too overwhelmed. I also have my amazing support worker/job coach, Elaine Moody. My employers have made adjustments for me and a lot of things are structured in the best way they can be. It’s quite routine, which I like.
What skills do you bring to your role?
Attention to detail is extremely important in this role, as I certainly never forget – we are ultimately dealing with people’s lives. I am grateful to everyone who helps us in our clinical trials work. I am extremely analytical and enjoy researching lots of areas.
You’ve written a literature review about mental health in the workplace. Why did you want to research this topic? This is a very personal issue. I was diagnosed with depression in my early to late teens, after I struggled with moving schools a number of
Colin with some of his colleagues at the Jenner Institute
times as a child. I wanted to see if I could help school leavers, or adults, with mental health strategies and advice. I enjoy researching and presenting, so it was a natural stepping stone. Having the opportunities to do my independent research really helped me to thrive.
Tell us about the neurodiversity project at Oxford University.
‘Neurodiversity at Oxford’ is a project to connect, celebrate, and empower the university’s neurodiverse community of staff and students. Throughout the year we have talks, an art exhibition, blogs, a theatre performance, and a mentoring
scheme. I will be a mentor and will be doing a talk on sensory sensitivities and mental health.
What’s your advice to other autistic people who would like to work in research?
Be yourself. Nowadays, disclosure of a diagnosis can be a very good thing with employers. I was very lucky in this regard. I do know others who aren’t, though. However, all you can be is yourself – you do have strengths, and can do it. Try not to be too scared; we all get scared. Importantly, people employ you on what you can bring to the table. Just be you!
Like to be featured here, talking about your job or volunteering role? Email YourAutismMag@nas.org.uk Find advice on looking for a job and support in work at autism.org.uk/employment Our Autism at Work programme, in association with the Bloomfield Trust, promotes roles to autistic jobseekers and supports them through the recruitment process. We then offer coaching to successful candidates and their managers, creating the best possible conditions for success. Find out more at autism.org.uk/work
Spring 2022 21
Masking
“It’s important we have spaces where we can completely de-mask” Autistic adult Helen Ellis explores different types of masking, the risks of burnout, and how to help the autistic people in your life if they mask. And, over the page, Nidhi shares her story Masking has been described in a number of ways by different people over the years. It is often discussed in connection with society’s expectations of how people should interact. The concept that being noticed as ‘different’ is something to be avoided, and struggles should be hidden or downplayed. Autistic masking is a combination of trauma response, self-protection and applied observational learning. There are four categories of masking: instinctive, subconscious, ingrained and active masking. Instinctive masking is related to a fear or trauma response, something that we do as a survival reaction when a part of our brain is hyperaware of a perceived danger. This type of masking is often tied to our base needs around feeling safe and having options to escape available to us. The hiding of pain or fear to avoid being seen as vulnerable is a common example of instinctive masking. Subconscious masking is a reaction that has been 22 Your Autism
developed as a response to operant conditioning or trauma. The mask is there to protect us from someone else’s negative, and potentially dangerous, reaction. This can include
being submissive or fawning to de-escalate a situation. Ingrained masking can be mistaken for instinctive masking, but it is essentially a learned response. It
Masking
is something that was at one point a conscious choice, but that has now occurred so often that it has become an embedded ‘subroutine’ in an autistic person’s brain. It is the default response to the trigger action or situation. Ingrained masking is often tied to society’s expectations and conventions, like suppressing the need to pass wind in public or saluting in the military. The final type of masking, active or conscious masking, is a direct recognition that the current or approaching situation is not a safe place to be your authentic self. There is then a definitive choice made to engage in masking strategies for self-protection, rapidly processing the various information available and narrowing down options available to create the most effective mask. This can happen on the spot (ie when suddenly encountering an acquaintance somewhere unexpected) or through meticulous
Giveaway
We have a copy of Autism and masking: How and why people do it, and the impact it can have by Felicity Sedgewick, Helen Ellis and Laura Hull to give away to one member. To enter the draw, email your details to YourAutismMag@nas.org.uk by 20 April, quoting ‘Masking’. The winner will be announced in the next issue.
advance planning when receiving an invitation to an event, for example. Active masking is the type of masking that most non-autistic people can relate to. The concept of putting on your ‘work persona’ before going to the office or having different ‘sides’ to your personality depending on who you are with are strategies that non-autistic people use as well. We all have times we don’t want others to know what we are really thinking and feeling. And we all have times we have to catch ourselves before we say or do something we would regret.
The risks of masking
Masking is exhausting, especially when done in a high-pressure situation or one that lasts a long time. The need for constant observation and monitoring of other people’s reactions to ensure that we can quickly catch any mistakes we make is incredibly draining. It can lead to us giving an impression of being ‘intense’ or even ‘fake’ as the mask may shift and alter with new information. Masking too intensely or for too long can run the risk of burnout. The energy reserves we use to mask simply start to run dry and we have nothing left to keep the façade going. This is when we are most in need of support. We are losing our sense of control over our masking.
And it can become hard to know who we are when raw and exposed, mask-free but not by choice. When we are constantly hiding our true responses and feelings, it can lead to distressing concerns over our identity and self-worth. If our relationships have not been built on ‘reality’, then do our friends really like us or do they only like the person we present via our mask? And who are we really if everyone only ever sees an incomplete version of us? These are questions that can lay heavily on our minds. They can cause us to resent the expectations of society and people we know who are putting us in situations where we feel we have to mask to stay safe.
What we need to minimise masking
To actively support autistic people to be ‘mask-free’ where possible, society needs to be more accepting of difference. People need to recognise when their own biases and expectations are putting pressure on others. There will always be times that masking is necessary. Parents and emergency workers have to suppress their own fears and struggles to not increase their children’s/patient’s distress for example. The key for autistic people’s wellbeing is for those moments of ‘strategic masking’ to be minimised, Spring 2022 23
Masking
Nidhi’s story A smile: a simple gesture yet profoundly powerful. A smile emanates warmth, comfort and belonging − things I longed for. From a young age, I felt I didn’t fit in: I found simple tasks that came easy to my peers challenging. I had different interests to most other girls and I struggled to make friends, no matter how hard I tried. In desperation to be accepted, I started to observe my peers and copy their behaviours, communication, and actions − unknowingly, I learned to mask. To onlookers, I was a bubbly character, extroverted and loud with a trademark smile. I wore my mask to fit in with social norms. But
to create environments that are both less judgemental and more sensory adaptive. By relieving sensory overload, there will be less pain and distress to mask, and more energy available to either keep a lighter mask going longer or to deal with any potential consequences of being mask-free. It’s important that we have spaces where we can completely de-mask, safe environments where we will not be judged for stimming, for blurting out our random unfiltered thoughts, for being our authentic selves. The more spaces we have where we feel safe, the more we can be free to be ourselves, to know who we are. And to know that the people who love and care about us, love and care about our true selves and not a created projection or mask. Ultimately, the choice as to mask or not will always be subjective and 24 Your Autism
masking can be exhausting, unhealthy and unsustainable. Eventually, it caught up with me. People assume having a diagnosis is like an on and off switch: you are labelled and suddenly you are fixed, no more masking. But this isn’t the case. First, there is nothing in need of fixing, but second, I cannot suddenly stop masking as it is a part of me, ingrained in me. It is subconscious. Instead, my diagnosis has allowed me to understand myself. I recognise when I am masking, how much effort it takes, the consequences it has on my health and when I need to intervene to prevent burnout. Who knows whether I will mask for the rest of my
situational. Don’t let yourself get trapped behind a mask, but also don’t be afraid to use it to protect yourself. Staying safe is always the most important thing.
life? But one thing is for certain, my diagnosis has made me realise I need to accept myself for who I am. I am different. I am autistic and that is a good thing. Read more from Nidhi at www.behindthesmiles.co.uk
Read more about masking, fatigue and burnout at autism. org.uk/fatigue
Readers to the rescue!
Post your problems or answers on Facebook at the National Autistic Society members’ group or email YourAutismMag@nas.org.uk
Do you have a problem our readers can solve? Get in touch and benefit from the experience of your fellow members
Q
How have you dealt with receiving a late (adult) diagnosis of autism – have you told work colleagues? The reason I’m considering this is because I feel the need to explain why I can be inflexible. If I have to cover someone else’s work, it can be really stressful because if I don’t do something routinely, I struggle. But I don’t particularly get on with most of my work colleagues – and I cannot stop myself from thinking For extensive information and people still see autism as a weakness. guidance about Anonymous, via our online community autism, visit our website: autism.org.uk I had this exact same situation exacerbated by the pandemic. I was diagnosed after getting into trouble at work (written warning) and felt that things weren’t right. I initially shared my diagnosis report with my line manager, HR department and occupational health within our company. It didn’t come as news to my line manager as he had already recognised it some years earlier. They have been extremely helpful and have made my work pattern as free from stress and change as possible. I have a weekly routine covering various sites and no longer work out-of-hours callout. I am fortunate that my employer is very inclusive to all and being autistic has been seen as a positive. A year later, there have been glowing reports into how well the weekly tasks have been completed and that I had taken full ownership of any problems and resolved them. I am fortunate to work in a team where I do get on well with everyone else. Hugh Wright
Thank you for your advice, Hugh. You win a copy of Autism working: A seven-stage plan to thriving at work by Michelle Garnett and Tony Attwood.
26 Your Autism
iStock.com / fizkes
A
A
People judge you whatever you do, say, don’t do or don’t say. As you don’t get on that well with your colleagues anyway, you don’t have anything to lose by being open and honest about your diagnosis. In fact, you can only gain their understanding and acceptance. By being authentic, you’ll show great strength of character, which will hopefully lead to improved working relationships and you feeling better about yourself. Claudia
Advice
A
iStock.com / Yuri_Arcurs
My answer is yes – do tell colleagues, and it won’t come across as a weakness if you tackle it wisely. I received a late diagnosis and had similar issues and disconnect with people at work. I wrote a Personal Manual – a document in which I wrote some simple short sections explaining how to get the best out of me at work. Sections cover what I value, what motivates me, how I prefer people to contact me, what information I need for decisions or tasks. I don’t mention autism at all until the final section “what do people misunderstand/not know about me”. There, I briefly highlight some issues people have experienced with me from my point of view. I have included a picture that highlights the talents I have because of my autism, as well as the downsides. What I do to help myself, as well as what I need help with. I share this with my colleagues, usually via email, inviting them to chat if they have questions, or in a chat with them depending on how comfortable I am around them. I also ask if they would be able to provide something similar, as it will help me approach them better, as I don’t pick up on cues easily. By making the sections universal and highlighting the positive sides of my autism, it does not come across as weakness, asking for help only or something negative,
Help me next!
How can I find an autism-friendly dentist in my area and make visiting the dentist easier for my child? Anonymous, via our online community 28 Your YourAutism Autism
just as something different. So far, most reactions have been really positive and helpful. People often mention how they, too, prefer X, Y, Z, as per my manual. Some people don’t really react and that’s OK. Dana Withers
A
Many organisations have a ‘disabled employees’ network’ (DEN) that works to network with other companies to establish best practice in creating an inclusive and accessible workplace. This DEN is a confidential group of fellow employees who you can approach and talk with about your condition and concerns. At the very least, I would suggest you talk with your Human Resources department, as an employer is also required to consider ‘reasonable adjustments’ to help an employee complete their duties. In your case, this could be, for example, a quiet room to work in if needed, noise-blocking headphones, anti-glare computer screen, and so on. Before retiring, I was a chairperson of my company’s DEN and one of the issues I found in trying to understand the level of disability in the organisation was that many employees felt just as you do. They worried about the consequences from the employer and colleagues, irrespective of what protection the law offers them. I am the father of a young man who has multiple and complex disabilities, including autism. I could not work overtime, I could not change my working hours, and demands placed upon me that challenged these requirements raised my levels of anxiety, knowing that I had to put my son’s care first. I did not want to explain why I was inflexible as I felt it private. In time, however, I began to confide in colleagues. Eventually, I went to our HR department and my line manager to explain. I was fortunate in that those I opened up to respected my position, and work became much easier. I hope you find something in what I have said that will give you confidence to make a decision you feel comfortable with. Paul Fraser
Send us your solutions for a chance to win a copy of Autism: How to raise a happy autistic child by Jessie Hewitson.
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How to… deal with loneliness Autistic student and mental health activist Emily Katy gives her advice on loneliness Loneliness is a familiar feeling for me. I have often felt lonely, even when surrounded by people. In the past, this was mostly because I felt like nobody understood me. I didn’t have the words to express how I felt and how I experienced the world, so I felt very disconnected from other people. My anxiety overwhelmed me a lot of the time, and stopped me being able to join in with the fun things my friends were doing. This resulted in me feeling lonely. For some autistic people, the feeling of loneliness can be really strong, and it can feel incredibly isolating. If you are reading this and feel this way, I want you to know that you’re not alone. Here are my five top tips and advice for you:
1. J oin online autistic communities, such as
on Twitter, or through the community page on the National Autistic Society’s website. Connecting with other autistic people has made such a difference to my life. It’s given me somewhere to turn to for advice and support, and is a really fun community to be a part of!
2. See if there are any groups related to
Emily Katy 32 Your Autism
your special interest, or any interest you have, that take place in your local area (hint: ask on your local area’s Facebook page). Getting out of the house and connecting with people who have similar interests to you can really help. Imagine getting to share your excitement for your special interest with other people who are equally
iStock .com / SolStock
Advice
Advice
as passionate about it! I know this can cause a lot of happy stimming.
3. Consider volunteering somewhere. This
is a great way to get out and meet people and develop new skills – and you might have some very valuable interactions with people. It can also be a great way to build structure into your week, which I know helps my mental health.
4. Try to be kind to yourself. Feeling lonely
can really get you down and lead to a lot of negative thoughts, but those thoughts are not facts. I remember feeling like nobody wanted to be friends with me, but that wasn’t true. I just hadn’t met the right people yet who would love me for who I am. Amid all of these thoughts, please remember you are good enough.
desire to reach out to help other people who are feeling this way was one of the reasons I got involved with Not Alone Talk, a daily chat hosted on Twitter. It was started by @ harmlesslife during lockdown in 2020, and after a few months of joining in, I started hosting once a week. Seeing people find community through our chat has been priceless, and we’re always there for you too if you need us. Just search the hashtag #NotAloneTalk every night between 8-9pm and join in the conversation. You are not alone. Thanks to the Department for Digital, Culture, Media and Sport, which is funding our loneliness campaign.
5. Try not to compare yourself with other
people, especially if they are neurotypical. We tend to compare ourselves to other people’s highlight reels on social media, when people’s lives aren’t as wonderful as they might look. We also like to hold ourselves to neurotypical standards when we are not neurotypical. For instance, it’s OK to not go out to loud places if those sorts of situations make you feel uncomfortable. You don’t have to do what everyone else is doing. Do what makes you feel comfortable.
Loneliness isn’t a feeling that will disappear overnight, but it can fade with time. My
Read more from Emily Katy on Twitter @ItsEmilyKaty or on her website authenticallyemily.uk Join our online community at community.autism.org.uk Find out about our new online branches at autism.org.uk/onlinebranches
Spring 2022 33
Talking to your child about their autism diagnosis When should you tell your child about their autism diagnosis and what’s the best way to do it? We answer some of your questions
34 Your Autism
It is very important for everyone to develop an awareness of who they are. A key part of this for your child may be understanding their autism diagnosis. Most autistic adults agree it is important for people to know they are autistic. There are many autistic adults diagnosed in adulthood who talk about not having understood themselves in their early lives, and wondering why they felt different. Rachel Pike, author of Autism: Talking about a diagnosis, says: “Keeping your child in the dark about their autism diagnosis can feel like the kindest thing to do. But, in reality, it can be incredibly helpful for them to know about it.
Many autistic adults say they wish they’d been told earlier. Just knowing the reasons for their difficulties and differences came as a relief, a source of comfort, and a starting point for finding strategies for life.”
When should I tell my child?
David Scowcroft, one of our EarlyBird course trainers, says: “When you should discuss and explain the diagnosis to your autistic child can be difficult to decide. Explaining autism to a young child is not easy. Some parents tell their children about their diagnosis when they’re quite young, when their child becomes aware of their differences
iStock.com/mixetto
Advice
Advice
and starts to ask questions. Other parents wait until their child is slightly older, as they feel they will understand the diagnosis better.” It’s important to think about the level of your child’s understanding. Will they be able to understand the information even if it’s delivered in a very basic way? You may want to ask your child’s school or specialist psychologist to support you with your decision and approach. For Purple Ella, who has two autistic children and is autistic herself, she knew she would have to tell her children’s teachers about their autism – as well as other parents, if her children went for a sleepover, for instance. So, it was obvious that her children needed to be told they were autistic too at this point, or they would have heard it from someone else. Another consideration is your own frame of mind. Are you emotionally ready to talk about your child’s autism diagnosis? If you have just got the diagnosis, you might need a bit of time to process it yourself and to find out more about autism before speaking to your child. Rachel Pike says there might be a natural time to raise the subject. “It might feel like the right time is after a diagnosis appointment or meeting. Some parents have seized the moment after attending a talk about autism when they feel more confident and knowledgeable about the diagnosis. The discussion may arise naturally after an incident at school that relates to their autism.” When you are ready to start discussing autism with your child, choose a moment when you’re both in a calm mood and in a familiar, comfortable place. Try to make sure you won’t be interrupted. Your child
Ann’s story
If each child on the autism spectrum is different, then it makes sense that the time to tell each child they are autistic could be different, too. I can share about how and why we told our eldest son, but our younger one still isn’t at the stage where he would understand. We haven’t had a conversation with him about it, and to be honest, I don’t know if we ever will. When our eldest son was eight years old, he was struggling to do his maths homework. His poor motor skills meant he wasn’t always lining the numbers up correctly and he started to forget what he needed to do to work the sum out. A few sums later and he was becoming annoyed and upset by his own inabilities and asked why his brain and fingers didn’t work properly. He had
recognised that he seemed to be struggling where others weren’t, and couldn’t understand why. Of course, we knew his brain and body worked, they just worked differently to most other people. And a day or so later that’s how we explained autism to him. He processes things differently − the way things feel, or sound or the way he remembers. We explained that sometimes this makes things more challenging and sometimes it means he sees things and does things in a wonderful way that no-one else does. Five years later and he owns his autism, and we couldn’t be prouder of how hard he works to be the best him. Ann Hickman writes the ‘Rainbows are too beautiful’ blog at rainbowsaretoobeautiful.com
Spring 2022 35
ALAN HENDERSON
I’m a 41-year-old lad with ASD I have a faulty fourth chromosome gene which means I have autism. I’m also gay and I can easily be stereotyped and I find this hard as well. Things I like doing in my spare time are: cinema, bowling, dancing, pubs, clubs, playing football, spending time with friends and family, autism pride, animal welfare, Greenpeace UK, London gay pride, Chelmsford gay pride, the national autistic society, autism Anglia, Leeds gay men group, Northampton LGBT group, Wellingborough gateway club, Wellingborough LGBT group Braintree gateway club Colchester gateway club stay up late Wellingborough night club disco, playing PlayStation 4, playing final fantasy 7 remake, playing just dance 2020, cooking, cleaning, going to the gym, world naked bike ride, naturist action group, I’m a member of the management collective for naturist action group, theme parks, rollercoaster rides. I’ve decided to write this article to share with others like me who have this similar problem. I’m happy to hear from anyone who is gay with similar interests as me and has had the same experience as me. Here’s my websites and contact details:
www.alanjhenderson.co.uk alan@alanjhenderson.co.uk
NEW WEBSITE COMING SOON!
www.facebook.com/Alan.Henderson.14272 Alan’s Autism Awareness: www.aaasupport.co.uk
Did you know you can remember the National Autistic Society with a gift in your Will? For a free information booklet, please email or call legacies@nas.org.uk 0808 800 1050 The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
Advice
may need time to think about what you’re saying or to ask questions.
There isn’t one ‘right’ way to tell your child about their diagnosis. The information they need about autism and their diagnosis will vary depending on their level of understanding. One of the ways some parents start a conversation about autism is to talk first about differences between people. For example, you could write a list of family members’ characteristics, and what they are good at and find more difficult. Then you could talk about what your child is good at and what they find difficult. You could point out that there is a name for this particular pattern of differences. Your child may have met other autistic people. You could explain that, although autistic people have some things in common, they are all different. Pike points out that many autistic people need visual information as well as verbal information. So have written information, such as web pages or books, to back up what you are saying.
How might my child react?
Your child may be pleased that they now have a better understanding of themselves. However, some children will deny that they have any difficulties and will not accept the diagnosis. If this happens, don’t worry – they may come round to it in time. Some children will become concerned that there is something seriously wrong with them. You may need to emphasise that autism is not a disease and no-one can die
iStock.com/SrdjanPav
Ways of talking about autism to your child
from it. Autism is a lifelong condition, but with the right support, autistic people can thrive. It may be that your child needs some additional support. For example, they might have a teaching assistant at school who helps them with tasks they find difficult. You could also point out that your child is good at some things at school that other children need help with. Be there for further conversations if your child wants to talk or ask questions. Having a question box, diary or email system can make it
easier for some children to ask personal questions. It also gives them more time to process your answer or think of other questions.
What if my child wants to meet other autistic children?
Some children find it helpful to meet other autistic children and to learn they are not alone. Our local branches run a range of activities for families. Our Autism Services Directory at autism.org.uk/directory lists social groups, after-school clubs, and support groups around the UK.
Autism: Talking about a diagnosis by Rachel Pike is available at autism.org.uk/shop. As a member, you benefit from a 10% discount on all our publications. Read more guidance at autism.org.uk/talkingdiagnosis You may also want to use our ‘What is autism?’ web pages at autism.org.uk/autism. Hear more from Purple Ella at youtube.com/purpleella Spring 2022 37
Notebook
Everything you need to read, do or see
As we see it
Amazon Prime video VERDICT: An opportunity lost, not a battle nearly won Having watched the trailer for As we see it, I was looking forward to watching it. It’s a drama about three autistic people played by autistic actors living together with their aide. The show has good messages with plotlines about an autistic person facing his dad battling an illness. However, after seeing the first three episodes, it does so in a clunky, overstated way. The actors make the best of an uneven script and there’s some beautiful cinematography at times, especially with one of the characters, Harrison. But there’s a double standard between emotional scenes and perspectives featuring autistic and non-autistic people. Overall, As we see it inches things along for autistic people in terms of representation, but not in our depiction. But there are the ingredients of a far greater programme putting autistic and neurotypical characters’ perspectives on an equal footing that’s waiting to be made. Leo Capella, Job Coach at the National Autistic Society
Giveaway
We have a copy of From hurt to hope: Stories of mental health, mental illness and being autistic, edited by Mair Elliott, to give away to a member. For your chance to win, email your details to YourAutismMag@nas.org.uk by 20 April, quoting ‘Hurt to hope’. The winner will be announced in the next issue. The winners of last edition’s giveaway are Katherine Stewart and Jane Colclough. They each get a copy of Connecting and communicating with your autistic child by Tessa Morton and Jane Gurnett. The winner of Approaching autistic adulthood by Grace Liu is Alison Jones.
What are you reading or watching?
Send in your recommendations for autismrelated books, TV shows, films, and podcasts to YourAutismMag@nas.org.uk, and we may feature you on these pages.
Those they called idiots: The idea of the disabled mind from 1700 to the present day AUTHOR: Simon Jarrett PUBLISHER: Reaktion Books PRICE: £25 VERDICT: Enlightening and superbly researched history
The title might put the reader off but this is a serious and learned work. As a historian, research fellow at Birkbeck, University of London, and editor of Community Living, Simon Jarrett has done what needed to be done and at an important time. This is to look at how language and the cultural assumptions underlying it, and ideas, have changed over the past 200 years. The book is, in a way, a forecast of more changes – but only if society evolves towards one without discrimination. When the National Autistic Society was founded in 1962, we inhabited the world of ‘defectives’, ‘the subnormal’, ‘the ineducable’ and ‘the mentally handicapped’. Other subtler words were ‘maladjusted’ and ‘delicate’. Today, we use the terms ‘those with learning disabilities’, ‘special educational needs’ and ‘neurodiverse’. There may never have been an acceptable description. From 1700 to now, and continuing, language has been inadequate to express the range and diversity of the human mind and body. This is not a book about autism, but a history of a world many of us, parents and siblings, are familiar with. Too often, we are on the edge of denying a condition of being human. But we need to know our history, and Simon Jarrett is the guide we have been waiting for. Michael Baron, one of the founders of the National Autistic Society
Spring 2022 39
Notebook
Autism: In conversation with Auticon podcast VERDICT: A fun and informative soundbite into the lives of autistic employees
Carrie Grant, the National Autistic Society ambassador, chats to autistic adults about employment in this brand-new podcast from Auticon (a global IT firm whose consultants are all autistic). Guests mix practical
tips with personal anecdotes, and challenge traditional ways of working. The best bits include Connor Ward’s thoughts on neurodiversity in the workplace, and the perils of hot-desking, and Sarah McMullan on her late diagnosis. This podcast is a ‘must-listen’ for employers of autistic people and autistic employees alike. Hermione Cameron, Copywriter at the National Autistic Society
Our six favourite… spring days out, by the Huckins family
1
Fairytale Farm
The farm has been designed to put disabled people first. We love the Enchanted Sensory Walk, Huff and Puff adventure play area and the unique events that take place all year round. fairytalefarm.co.uk
2
Cotswold Wildlife Park
We love watching the penguins being fed. And the spacious adventure playground is always a big hit. The highlight
of the day is to hop on the train that runs through the wildlife park. cotswoldwildlifepark. co.uk
3
Hatton Adventure World
We enjoy the spacious outdoors, being among the animals and feeding the goats. We all love sharing time together on superslide mania in the indoor play area and a bite to eat in the cafe. adventure. hatton world.com
4
Stratfordupon-Avon
There’s lots to do here, and – if you only want to do one thing – everything is close by. You can feed the ducks, take
a boat ride and visit the recreation ground with a paddling pool. visitstratforduponavon. co.uk
5
St Nicholas Park, Warwick
This park has a funfair, play area and a paddling pool, which is a favourite with our family. The space available is great, and we make the most of
it by taking a picnic. stnicholaspark.co.uk
6
The National Herb Centre
Great for a short trip. We enjoy being surrounded by acres of land and exploring the trails, listening to the different sounds of nature. Relaxing, calming and very peaceful. herbcentre.co.uk
Thank you to Julie, Kevin and Evan Huckins for inspiring us to get outside! Do you have an idea for our six favourites section? Email us at: YourAutismMag@nas.org.uk
Spring 2022 41
Snapshot
I’m a… podcaster
Meet Lloyd Beck, founder of Check It Tv podcasts. Lloyd writes about raising autism awareness on air and interviewing celebrity guests – from Tito Jackson of The Jackson 5 to the distinctive voices behind Grand Theft Auto 5... I was diagnosed as autistic when I was about seven. I’ve always found communication difficult. Making and keeping friends is a nightmare, and it often feels like nobody understands what I’m going through. I’ve tried working in a normal job, but have never completed the three-month trial. This leads to further anxiety. When I work around people, I can feel overwhelmed, and keeping up with daily instructions is tiring. In 2019, I was living on my own, so decided to start my own podcast over Zoom –
Keep up with Lloyd’s projects and check out Check It Tv podcasts at: bit.ly/check-it-tv Would you like to share your achievements here? Email YourAutismMag@nas.org.uk
42 Your Autism
interviewing celebrities and sharing my experience of being autistic. I really enjoy chatting to guests and learning about others. I’ve spoken to a wide range of people, from actors and musicians to producers, politicians and athletes. During the 2020 lockdown, the guest list exploded as more people were available. When I finish recording, I have no choice but to go back and edit the conversation. This helps me learn from errors, and improve my communication. I can also see how often I go shy and look away, even when I’m talking. Securing guests for the podcast really boosts my confidence. It shows me there are people who care about autism, and reminds me that people want to give their time when they can. I’ve had more than 200 guests and they have all been amazing. Tito Jackson, in particular, was great. Interestingly, he seemed quite nervous during the interview, which made him more human. I also loved talking to the legends behind the video game Grand Theft Auto 5: Ned Luke, who voices Michael, and Shawn Fonteno, who plays Franklin. It took time to confirm these guests, but it was worth it. I would definitely recommend podcasting to fellow autistic people. My top tip for aspiring autistic podcasters would be to stay persistent and patient, and you will get the results you need.
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