YOUR Winter 2023
Festive fun Christmas celebrations and adaptations
Eating challenges Tips and strategies
Advice for carers Making time for you
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Preparing for supported living and World Autism Acceptance Week
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YOUR
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Winter 2023 EDITOR Suzanne Westbury YourAutismMag@nas.org.uk CONTRIBUTOR Chrystyna Chymera-Holloway HEAD OFFICE National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 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 autism.org.uk DESIGN AND PRODUCTION
CPL One 01223 378000 cplone.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 57, No 4 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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Making time for a break
Contents What’s new
A round-up of the latest news
World Autism Acceptance Week 2024
Lee talks about becoming a neurodiversity champion
Making Christmas work for us
Munieba’s working life
08 Getting breaks as a carer 26 The importance of time off
How to make the season work for you and your family
Set for surgery
An autism-friendly operation
Readers to the rescue
30
How to...
32
11 Dealing with noisy neighbours 12
...prepare for supported living
16
We find strategies to help
Autism-friendly celebrations
Your Christmas tips
34
04 “My autism is a strength” 22
Join us to help fundraise
My diagnosis
Eating challenges
34
Managing eating challenges
39
Notebook
Things to read, do and see
20 I’m a... gymnastics coach 42 and marathon runner Connie tells her story
1,300 autistic detained mental health hospitals” 4
“More than people are currently in
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What’s new?
Get in touch!
Our round-up of the latest news and views
Guiding mental health
and too many reach crisis point. Our research suggests this is driven by a lack of understanding and not being supported in a way that takes into account autistic experience and needs. The aim
of the module is to increase understanding of autistic young people’s mental health experiences and explore strategies to support them. Find out more at autism.org. uk/mentalhealthmodule
iStock.com/ LeoPatrizi
We have a new e-learning module launching in January 2024, aimed at professionals and parents who are supporting autistic young people aged 13 to 18. The module will be A guide to the mental health experiences and needs of autistic teenagers. It will be free to access throughout 2024. When developing our new module, we recognised the need for a preventative resource that was led by autistic people. Everyone involved in the module development emphasised that autistic teenagers need supporters in their life to understand their autistic experience, and to recognise their autistic identity and their needs. We know that many autistic teenagers develop mental health problems,
It’s time to act An incredible 18,234 people signed our letter to the Prime Minister, asking him to introduce the Mental Health Bill and make it law urgently, in line with the Government’s promise to reform the outdated Mental Health Act. We were disappointed that, despite your amazing response, the Mental Health Bill was
not included in the King’s Speech on 7 November. Our young ambassador, Zaynab, handed over your signatures to No. 10 Downing Street. She said: “We’re in a crisis of autistic people being stuck in hospital where the average stay is five and a half years. We need change now. Four years of inpatient care changed me, and I can’t get that time back. We deserve to be empowered and understood. We deserve human rights.“ More than 1,300 autistic people are currently detained in inpatient mental health hospitals. The proposed changes to the Mental Health Act include changing the definition of ‘mental disorder’, meaning autistic people who do not have an accompanying mental health condition can’t be detained under section 3. Stay updated on this campaign at autism. org.uk/what-we-do/campaign/mental-health
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News
Gifts That Do Good eGift cards
iStock.com/ LeoPatrizi
This Christmas, we are delighted to launch our new range of eGift cards. eGift cards are electronic cards delivered by email. When you buy one of our Gifts That Do Good eGift cards on behalf of a loved one, 100% of the donation amount will go to supporting autistic people and their families. It will be used to help provide expert advice and guidance on our website, connection with like-minded people via our online community, friendship and support via our local branches network, or one-to-one job coaching for autistic people. Find out more at autism.org.uk/ giftsthatdogood
Making Duke of Edinburgh Awards more accessible We are excited to be launching a Duke of Edinburgh (DofE) Award Community of Practice to share advice on making the scheme more accessible to autistic young people. Our DofE Community of Practice will bring people together to share knowledge, experience and learnings, with the aim of upskilling organisations to deliver autismfriendly DofE awards in ways that enable more autistic young people to take part. We will also develop a toolkit offering tips, guidance and different ways to approach the challenges autistic young people may have in accessing and achieving the DofE awards. Over the next year, there will be regular DofE Community of Practice events, held virtually via Teams. These events are also open to family members, to learn how to access the DofE award for their young people. In July 2024, we will hold a face-to-face event to share achievements, launch the toolkit and celebrate young people achieving their DofE awards. To join the Community of Practice and attend the virtual events, email helen.storey@nas.org.uk
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The RHS Chelsea Flower Show Our charity’s garden themed around autism and masking has been selected as a show garden at the world famous RHS Chelsea Flower Show. It is being sponsored by Project Giving Back, a unique grant-making charity that provides funding for gardens for good causes at the RHS Chelsea Flower Show. Read more at autism.org.uk/garden
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Diary dates 6 December 2023
Starshine Carol Concert
Join us this Christmas for our 10th annual Starshine Carol Concert. Held at St Clement Danes Church in central London, we’re looking forward to an evening of Christmas carols and festive cheer, featuring the EC4 Music Choir and celebrity guests. Book your tickets at autism.org.uk/starshine
14 March 2024
Annual Professionals’ Conference Our conference for professionals runs live online each March and offers a varied programme, focused on increasing delegates’ understanding of autism, autistic experience and best practice. Delegates will hear from a range of specialists and have the opportunity to learn from personal insight, professional practice, lived experience and research evidence. Read more and book at autism. org.uk/conferences
7 April 2024
London Landmarks Half Marathon
An event like no other. Take on this fun-filled challenge with live musical and theatrical entertainment all along the route. Sign up at autism.org. uk/londonlandmarks2024
2-8 April 2024
World Autism Acceptance Week
Our favourite week of the year is returning! See pages 8 and 9 for how you can get involved.
Thank you to our fundraisers! We want to say a huge thanks to all our fundraisers – we couldn’t do our work without you. This quarter, we would like to highlight young people at the Coborn Centre for Adolescent Mental Health who arranged a charity fundraising event in the hospital grounds. They made products including bracelets, bath bombs, bookmarks, candles, canvas paintings, tie-dye shirts, sensory bags filled with sensory items, and food items such as cupcakes, sandwiches and fruit skewers. They raised an amazing £187. Well done to everyone for making such fantastic products to sell, and for raising autism awareness.
The cost of SEN tribunals Research from Pro Bono Economics, commissioned by the Disabled Children’s Partnership, has found that £60m of public money was wasted on lost SEND tribunals in 2021-22. Around 9,960 places in SEN units in mainstream schools could be funded each year with the money wasted. You can read the full report at probonoeconomics.com/ wasting-money-wasting-potential-the-costof-send-tribunals
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Support
World Autism Acceptance Week 2024 World Autism Acceptance Week, our biggest fundraising campaign, is back 2-8 April. For 2024, we’re asking everyone to get as colourful as possible with their amazing fundraising. Join us and thousands of others in schools, workplaces and local communities to raise vital funds and help create a society that works for autistic people. How to get involved
Join a Spectrum Colour Walk – We’ll be heading to London, Leeds and Birmingham to host our annual 5km walk. It’s suitable for all ages and abilities and located in a calm, inclusive green space. Do your own Spectrum Colour Walk – It’s your walk, your way. Get sponsored, raise money and get walking for autism. Fundraise your way – We’d love to hear what you’ve got planned and we can support you all the way, providing inspiration and advice. There will be downloadable resources, limitededition merchandise, top tips and a private dedicated Facebook fundraising group. Join us – and let’s make 2024 a year to remember.
Meet Quinn Quinn is eight years old and lives at home with her mum, dad and brother Roman, who is two and a half. Last year, Quinn, her mum and a group of friends took part in the Spectrum Colour Walk in Battersea, London. They raised an amazing £242. “It was great taking part in the walk and we felt so proud to be doing so. It was a beautiful day and we’d love to do it again.” Claire, Quinn’s mum “My favourite part was walking past nature, because to me nature is my paradise.” Quinn When Quinn grows up, she told us she wants to run a shop that only sells sensory toys and gadgets for autistic children and adults. She specifically wants a shop because there are not enough shops dedicated to just this. Great idea, Quinn! If you want to take part in one of our organised Spectrum Colour Walks on waaw.autism.org.uk Saturday 6 April 2024 then you can sign up at waaw.autism.org.uk. Or, if big events aren’t for you, you can do your own Spectrum Colour Walk in a location and on a date that would suit you.
Walk for better education for autistic young people. Walk for shorter diagnosis times. Walk for better job opportunities for autistic people. Walk for autism acceptance. Sign up at waaw.autism.org.uk 8 Your Autism
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Support
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The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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My diagnosis
“Being diagnosed gave me an entirely different outlook on life” Lee writes about going from undiagnosed to becoming a senior fire safety leader and neurodiversity champion Throughout my childhood and into adulthood, I always felt ‘out of place’. That I never quite fitted into a social setting. Whether at school, work or with family, I just never felt right. This resulted in some rather strained relationships and difficulties with the simple things in life. Why do I act differently? Why do certain things affect me more than others? Why am I burning out every six months? Throughout my 20s, I had so many questions, and this led to me being mis-diagnosed with things like stress, depression and severe anxiety disorder. My undiagnosed autism led me to being mis-managed, unsupported and generally feeling quite miserable. I have always managed to get jobs because of my ability to research subjects, be proficient in the subject matter and able to share my knowledge of a subject I am interested in (all thanks to my autism, I suspect). However, to be able to maintain a job and be a ‘good’ employee was a different story. This left me resigning from jobs – positions I had worked hard to achieve – due to feeling I was just not good enough. Fast-forward to my mid-20s, I met my fiancée Nikki, who I now share a beautiful little girl with. At the time, Nikki worked with autistic people. Within weeks she asked: “Are you autistic?”
This led to me researching autism and I felt as though someone had written a description of me. It was quite overwhelming, so I sought advice from my GP who referred me to a specialist. Following my diagnosis, I felt relieved; it was as though everything in my life made sense. It propelled my confidence and gave me an entirely different outlook on life. This allowed me to be open and honest with my employers. By letting them know I am autistic, it meant I could have the proper support in place to not only keep me in work, but to allow me to succeed. Currently, I work for the Greater Manchester Fire and Rescue Service as an inspecting officer. It is a very technical role that requires an attentive person who has excellent visual perception, a creative mind to solve problems and, above all, to be honest and show integrity – all of which are key strengths of an autistic person. I have recently been offered a new role as a fire safety compliance lead, where I’ll be managing a fire safety team and overseeing the fire safety department. Following my diagnosis, I feel empowered to share my autism story. I have become a neurodiversity champion and want to make the workplace inclusive for all. Winter 2023 11
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Real stories
Making Christmas work for us Rhiannon and her son Gabe tell us about Christmas in their house and how they make it autism friendly Tell us about your family
My husband and I have two sons and two daughters. Our boys, Cosmo and Gabe, are now teenagers, but were diagnosed as autistic when they were seven and three years old. They’re doing well now, but it has taken them a few years to get used to being themselves. Although, of course, teenagerhood has its own challenges!
How do you celebrate Christmas?
We usually celebrate at home and then go and visit family nearby. In the morning, our routine is that we’ll do the stockings on our bed. Then the boys usually want to race down and from then onwards, tension can begin to build. They start to get worked up and anxious, and this can end up in lots of shouting. Presents are a real challenge for our
boys. The are excited to get something they want, but it’s very difficult for them to be able to tell you what it is they want, and if you get it wrong, you’ll find it outside your door. They’re not ungrateful, but it’s a really hard thing for them to communicate. Gabe gets really worked up about Christmas and birthdays – on the morning in particular, it causes him a lot of anxiety. It’s so overwhelming for him, worrying about what’s in the gift, whether it’s something he wanted, how to deal with the expectations of how to react. These feelings become so overwhelming that his reactions can become quite aggressive. It’s not his fault, but it’s hard for people to understand. The boys do get excited about Christmas, though neither of them like to go to family gatherings. They find them overwhelming; people talking all around them, younger children running around – all the things that for everyone else are special about getting together. Gabe doesn’t like to eat with other people – the smells of the food, the closeness of people, it’s too much.
What have you done to try to make Christmas more autism friendly for the boys? Gabe, who is autistic, with sister Stella
One year, when Gabe was having a particularly difficult time, we decided
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Real stories
we’re not doing Christmas. We wanted to keep it as a normal day. We’ve tried other things such as not going round to our family’s houses for Christmas dinner, and just going later in the day. Now the boys are older, I don’t force them to come to family events. As parents, we also never wanted to take them to places when they’re not ‘behaving’. This is why lots of parents of autistic children hide away, and why it creates loneliness for us and for our children. We don’t go out and experience things such as seeing Father Christmas. That feeling of isolation is one of the hardest feelings for me at Christmas time.
Do you have any tips for other families?
It’s really important to be open with other family members. It would have helped us earlier on if we’d done this, and explained exactly what our boys needed. Family members could have made accommodations if they had known. But it can be difficult to be that open and honest. People have a picture in their mind of what Christmas should be like, and when it’s not the same for you, it’s hard to explain. They all want to make it special at Christmas, and emotions are fraught, the children are overexcited
“Some people like Christmas dinner with all of their family, but it causes me pain – the noise, the smell, the people talking to me. I’d rather be on my own.” Gabe
and everyone’s on edge. It doesn’t take much for this to impact our boys and send them into meltdown. Some simple understanding of autism would make a big difference.
Have you used any of the National Autistic Society’s support, such as our website, online community or our local branches? How has it helped?
The National Autistic Society’s advice pages on Christmas are good. They really help and I wish I’d have sent them to my family. > Winter 2023 13
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Real Interview stories
Our advice Before the day The shops are manic at Christmas − the noise, decorations, the songs(!) − so we avoid them. Now the boys are older, they want specific presents, so you have to think about it well in advance. I’m not worried if we get things handed back to us on Christmas Day because they don’t like them, but it helps to ask and then buy exactly what they want. Try not to have too many decorations around. In the past, I’ve tried to put up lots of decorations and we had to take them down. Gabe doesn’t like the flashing lights – if they flash on and off and have sequences, he gets overloaded. On the day We work at the boys’ speed on Christmas Day, whatever they feel they want to do. Everything’s spaced out a little bit more, because otherwise they get too overwhelmed. The boys like Christmas dinner. They have to have things separate on the plate, not touching. They need to decide what they want to eat, rather than us giving them Christmas dinner on a plate. The idea of visiting relatives is overwhelming so they won’t go anymore. They like having it a bit quieter and just chilling out at home. They’ll use the things they get for Christmas – music, games, and so on – or watch movies. After the day The decorations come down straight after Christmas Day. Any holiday like that, they’re up for a short period and then they’ll be gone. On Boxing Day, we’ll go out and visit family. Sometimes they’ll make the effort to go and we’ll
end up leaving early if it all becomes too much for them. The boys will usually stay up on New Year’s Eve and watch the fireworks. We have a traditional Italian dinner, a bit like haggis with lentils to bring in the new year, and Italian panettone. Overall, it’s about not making them do anything they don’t want to do around going out and visiting relatives, or it all just becomes a bit too much. Gabe and Cosmo do enjoy Christmas, but it’s got to be on their terms.
Read more stories and Christmas advice at autism.org.uk/Christmas
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Advice
Your Christmas tips Christmas can feel overwhelming with changes to routines, sensory overload and expectations about how to celebrate. We asked how you make the festive season work for you
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Advice
Erin
Before my diagnosis, Christmas could be quite stressful. Although five-year-old me expressed a love for Christmas lights, I was always quite agitated and tearful around Christmas. As well as the sheer volume of additional stimulation that Christmas brings, because of my lack of innate social skills, I often didn’t know how to express my feelings. One year, my grandpa took me to a garden centre with a light display. It was magical. There were little grotto scenes lit up throughout the store. We walked around and I looked at everything without saying much. At the end, Grandpa asked if I had enjoyed it. I turned around and said, much to his surprise and dismay: ‘I’ve already seen Christmas lights.’ Predictably offended, Grandpa reported this lack of gratitude to my mum when we got home. Mum was mortified; she couldn’t understand it as she thought I would have enjoyed it. And in reality – I had! That evening, back at home, all I did was talk about the lights I had seen, for hours. Why, then, had I acted so ungratefully? It was because I had needed time at home to process all the stimulation before
I was able to articulate my feelings on it. I hadn’t meant to be rude; I just hadn’t known how to express my appreciation in an appropriate way. After my autism diagnosis in 2012, my parents did Christmas differently. Decorations were kept to a minimum and they went up just a couple of days before Christmas Eve, and on Boxing Day everything was taken down. It was the best Christmas ever. Doing Christmas this way limited the stimulation and disruption to my routines. I was much calmer and happier. My parents also talked to me about how school was different – with Nativity productions and Christmas films. Normally this disruption to my routine caused me a lot of stress. Now they were able to prepare me, which helped reassure me. All of us should be mindful of the very human tendency to project our own ideas about what excitement and appreciation look like onto others. It’s easy to assume that just because you express your feelings one way, that your way is the right way, or the only way, and expect everybody else to show their feelings in a similar way. But it’s important we recognise the different ways people can express themselves. With Christmas, for the price of fewer decorations, the Christmas holidays were a lot happier for not just me but for my whole family, who no longer had to manage my frequent meltdowns.
Lesley
“I have just me and my carer for Christmas Day. For Boxing Day, I have friends round and do a buffet.” Paul
We try to go out for a walk on Christmas Day – I think exercise can help to dissipate nervous energy. We haven’t ever managed to solve the socialising problems of Christmas, despite much agonising. With extended family present, it is gruelling for the autistic ones; without them, there’s a feeling of regret at being unable to socialise as others do. The Christmas adverts contribute to this: they usually show large groups of happy people round a table piled high with dishes, in an expertly decorated house. They are designed to make you feel inadequate! I try to ignore them. Winter 2023 17
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Advice
Lauren
Plan presents with friends and family – I get really anxious about receiving gifts. I always worry I’m not reacting positively enough, that I’m letting the giver down. I worry they’ll see a microsecond of anything other than joy and that will upset them. To counteract those feelings, I’ve started discussing present buying with my family and friends. So we talk about what I want and what they want; the more specific the better. It does take out the surprise element, but I don’t really like surprises anyway, and if you have anxiety, chances are you don’t like them either. Get as much information as possible – I make a point to know what’s going on. For me, the biggest anxiety is food. So when it comes to the meals on Christmas Eve and Christmas Day, I make sure there will be at least a couple of things I can eat. I’m lucky because my family are very used to my struggle with food so they do take that into account when planning a meal, and that means a lot to me. It makes a massive difference to my Christmas experience.
Space out social events – Obviously there are some things you can’t avoid, but where possible I try and space out the socialising to give myself time to recover and recharge. And knowing in advance allows me to prepare myself, physically, mentally and emotionally. This makes it a bit easier to regulate my mood. Some things can’t be helped, but my aim is to try to keep my emotions relatively even, rather than the tumultuous up and down that they can be, which is exhausting and upsetting. When you can’t get out of a stressful event, create a safety net – If there’s a stressful event I must go to, I plan as much as possible. I’ll scout out somewhere to retreat to or bring/find a friend who can rescue me if needed. I create a safety net for myself and often its existence is enough. It takes the pressure off. Read more from Lauren at finding-hope.co.uk
Anonymous
I find Christmas overwhelming. It’s a big change and there’s a lot of noise and bright lights; the shops are so busy as well. It’s a massive sensory nightmare and I dread it every year, especially when extended family are due to come over, which happens every couple of years. I’m lucky though because my mum and dad are really supportive and understand it’s a difficult time for me. They don’t have flashing Christmas lights because they know my eyes are sensitive to that and they don’t play Christmas music loudly because they know it can overwhelm me. They give me time to process what’s happening and we go Christmas shopping when it’s quiet. I spend Christmas Eve in my room with my dolls and bears and have a sort of Christmas party. Sounds a bit sad I know, but I love it – for me it’s one of the best parts of my Christmas. I do this because I have no real friends and it’s become a special, more autism-y Christmas tradition. I’ve also used the National Autistic Society’s online community at Christmas. It was awesome because it meant we could all use the community to enjoy our own autistic Christmas, so that was really nice. I found it a home-from-home where I didn’t need to mask. I could turn to the other members for support and advice, and just to enjoy our way of Christmas without all the stress you get in real life.
Our online community is a place for autistic people and their families to meet like-minded people and share experiences. Join the discussions at community. autism.org.uk
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Experiences
Kiera and Noodle
Set for surgery We love to recognise autism-friendly practice. Here’s how the Royal Surrey NHS Foundation Trust made Kiera’s operation possible Kiera, 16, who has a brain injury that affects her balance, and is autistic, was due to have three teeth removed under general anaesthetic three years ago. But because she has high levels of anxiety and sensory overload when entering hospitals, Kiera had put the operation on hold, despite suffering pain from teeth growing into the roof of her mouth. Anxiety has had a huge impact on Kiera’s life, making it difficult for her to attend school, leave the house
and sometimes even her bedroom, as well as making healthcare visits extremely challenging. But three years ago, Kiera received lifechanging help from the charity Autism Dogs in the shape of Noodle, a working yellow Labrador. Noodle is a highly skilled autism assistance dog, specially trained to give reassurance and security to Kiera and support her in managing her anxiety. Kiera said: “Noodle has made a massive difference to me. He means
everything to me and I really struggled before I met him. He can tell if I’m upset and helps keep me grounded. He applies deep pressure therapy by lowering his weight onto me if I’m distressed. He helps wake me up in the morning and he’s made it possible for me to leave my house and have a life.”
Meeting Kiera’s needs
After her dentist warned she needed to have the impacted teeth removed, Kiera decided that if
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Experiences
Noodle could accompany her to hospital and stay with her until just before surgery, her operation might be possible. Vicki Ward, Royal Surrey’s Learning Disabilities and Autism Nurse, was asked by the Trust’s admissions team to look at how this operation could be made possible, given Kiera’s fear of hospitals and the importance of Noodle’s presence. Vicki set up virtual meetings with Kiera and her mum, Jac, to find out what could be done to help. “I approached the hospital’s decision-makers and talked to our senior nursing staff, the Infection Control Team and our Head of Service for theatres, anaesthetic and critical care to find out if Noodle could be present in the anaesthetic room with Kiera and next to her when she recovered after her operation. The response was very positive – a ‘yes, we just need to work out how to do this’ response.” Vicki added: “We obviously had to be mindful of other patients’ feelings and staff, as well as look at the clinical considerations such as hygiene, safety and infection control, but we are essentially here for patients and we need to make our healthcare accessible to all patients. We looked at what reasonable adjustments we could make and, for Kiera, Noodle is that reasonable adjustment. “We planned the surgery so that Kiera would be last on the morning list, which meant the anaesthetic room could be thoroughly cleaned before the afternoon list started. We arranged for Kiera to return to the same room for recovery after the operation to minimise stress and disruption for her.”
On the day
“Noodle stayed with Kiera until she’d had the general anaesthetic. We then encouraged him to hop off the bed and come outside for a run. As soon as she came back from theatre, he couldn’t wait to get back on the bed with her and make sure she was okay. It was lovely to see the interaction between the two of them.” Jac, who is also autistic, said: “We are so grateful to Vicki and all the staff at Royal Surrey who made it possible for Noodle to help Kiera. “When Kiera was starting to come round after her surgery, a machine was beeping because her heart rate was very high, but as soon as Noodle got onto the bed and she saw his face and he applied his weight on her, it came right down. Soon afterwards she was laughing and giggling with the amazing
student nurse who was with her. It was just incredible to see. “Kiera normally hates the smell, the noises, the lighting in hospital, and hates being touched by healthcare workers, so this is just a huge step and she is no longer in pain with her teeth, which is brilliant.” The Learning Disabilities and Autism Team are now working with Kiera on guidance to support other autistic patients with autism assistance dogs when accessing their healthcare at the Royal Surrey Hospital.
Mum Jac, with Kiera and Noodle
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Work
“In safety analysis, my autism is a strength” Munieba is a Probabilistic Safety Analysis Engineer at Rolls-Royce SMR Limited. She tells us about her role and what her company does to support neurodivergent employees When were you diagnosed as autistic and what led up to this?
I was diagnosed in October 2022. I was having counselling and, in my first session, the counsellor paused to run me through a questionnaire. She had an autistic stepson, and recognised I had a really structured, rigid way of thinking. It then took three months before I was formally diagnosed. I was fortunate, as my graduate scheme paid for the process. Before my diagnosis, I struggled with my mental health on my graduate training scheme. I started it during lockdown, and all training had been virtual, but as restrictions eased, in-person attendance was required. I found it difficult to cope with the sudden change of having week-long ‘training zones’, in which we would stay in a hotel with 30 other graduates, none of whom I knew well. We would have really heavy days of learning and social interaction, which required a lot of mental willpower for me. When I attended these training zones, I found myself eating and sleeping less, but had no idea why. By day four, I would wake up in the night and cry for no reason. I chalked it up to struggling to adjust after lockdown; I’d also just gone through a traumatic time when my aunty passed away, and I’d been in a car accident. It wasn’t until I got my diagnosis that I started realising how much I struggle with change, and how draining I find social interaction.
What is being autistic like for you?
I don’t really know. I got diagnosed quite late. I spent most of my life masking my autism completely subconsciously. There were a lot of things that maybe should have made me realise I was autistic. Unless I’m actively following a conversation, I can sometimes miss sarcasm because I haven’t had any context cues. I tend to take things literally and at face value. I’m very trusting and a bit naïve. I tend to over-communicate because I’m used to being misunderstood, and I’m always worried about how I’m perceived. I struggle with change massively, especially when it comes to changes in my academic/professional life. I also get some of my best traits from my autism; I love that I have a strong sense of justice, black-and-white thinking, and can break down most problems into a series of binary yeses or nos. I’ve also worked really hard on my communication skills and making myself clear. I love that I feel things very intensely, because it’s helped me foster my creativity and led me to drawing as an emotional outlet. It’s really difficult living in a world that’s not made for people like you, and I feel that in a lot of ways through my autism, race, religion and gender.
How did you start working at RollsRoyce SMR?
I studied a BSc in nuclear science and materials at the University of Birmingham. I really enjoyed my degree, and went on to join the Nuclear Graduates scheme, where I was sponsored by Rolls-Royce. It is a really cool programme that allows you to undertake secondments in companies across the nuclear sector. I worked within Rolls-Royce and it gave me an appreciation for what I wanted out of my future
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career. I knew I really wanted to work on innovative technologies, in a function that required strong analytical skills, but also required a broad spectrum of knowledge and a lot of interdisciplinary interaction. This led me to apply to Rolls-Royce SMR at the end of my graduate scheme, to work in nuclear safety, and I’m really glad I did.
What does your job involve?
I’m a probabilistic safety assessment (PSA) engineer, which, essentially, is a way of evaluating the probability of different failure scenarios by assessing plant performance against a range of accident scenarios. This
“I spent most of my life masking my autism completely subconsciously” involves consideration of the likelihood of the accident scenarios and of the failure of different safety systems/components used to prevent or mitigate against the accident. There’s a lot to this, from understanding high-level plant performance and design to understanding detailed system design. It involves working with a lot of disciplines to know their systems and work, from human factors and physical and electrical system Winter 2023 23
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represents race, religion and culture. Our Ability network provides representation for those with disabilities, neurodivergence or caring responsibilities. It provides a feedback channel to senior management for our neurodivergent employees, as well as a safe space and visible representation. Neurodivergence, diagnosed and undiagnosed, is really prevalent in the engineering sector, and our Ability network works really hard to raise awareness of this.
Have they made any adjustments for you at work?
I was asked if there were any adjustments I would like, but as somebody newly diagnosed, I don’t have an understanding of what I need in that sense. It was made clear this wasn’t a one-off conversation, and we could revisit the topic at any point, which was reassuring. Munieba was diagnosed in 2022
design, to control and instrumentation design, architecture, and the plant performance. There’s a lot of report writing involved with documenting our PSA model, attending technical and regulatory meetings, and carrying out our modelling activities and analysing results. Every day feels different, and there’s so much to learn, so I find my role really intellectually stimulating.
What advice would you give to others looking to start a similar role?
Go for it. Within engineering, and particularly within safety analysis, I really think my autism is a strength. You need to be detail-oriented, with strong analytical skills, logical thinking, the ability to learn quickly, and with strong data collection and retention skills. Honesty and integrity are critical to safety. These traits have all been really powerful assets in my role, and allowed me to grow very quickly.
What do you enjoy most about your role?
I love how systematic and structured PSA is in its approach to analysis. It’s really satisfying to break down functions into relevant systems, and then move into components and failure modes. It’s equally satisfying to plot sequencing of how you expect plant accidents to unfold and assign the different expected failure consequences. It’s a really logical approach.
How does Rolls-Royce SMR support neurodivergent employees?
Being inclusive is one of our six key values at Rolls-Royce SMR. We have five inclusion networks, and I lead our REACH network, which
We have a free ‘Finding employment’ online course at autism.org. uk/findingemployment
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Online autism training Our online courses have been created to fit into busy schedules. They include: • Understanding autism • Finding employment FREE module • Autism and sensory experience, and many more.
autism.org.uk/online-training The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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Scan the QR code for all courses
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Advice
Getting breaks as a carer Karen, who cares for her 18-year-old autistic son Jack, explains the importance of regular breaks from caring
Karen needs regular breaks to re-energise
I’ve just hit another dead end searching for respite care on the internet. I’ve already tried social services, leads from friends and local agencies. Living in West Dorset, we are blessed with beautiful views, but few carers. Even though we are eligible for short breaks and have a care budget, we cannot find anyone who can support our son Jack so that we can spend even one night away from home. We have been looking now for three years. Jack is autistic and has two anxiety disorder diagnoses among other issues. As he cannot travel more than a few minutes from home and would take time to trust anyone new, our options for care are restricted. Recently, I took the first holiday I have had away from Jack in 13 years. Sadly, it was also without my husband so he could be on caring duty, and I missed them both. We are far from unusual in not being able to get respite breaks, and we only have one family member who needs this support. Other families will have different and equally individual, challenging circumstances, perhaps with several children who need care. Some may not want, or expect, a break from caring. But I do. I feel that to be a good carer, I need regular breaks to re-energise and rebalance. I also want to be able to work. Trying to do all those things without respite has led me to the point of breakdown, and I have stopped work and study for the time being. In January 2023, The Guardian cited a report from Carers UK showing that 1.5m people give more than 50 hours a week as unpaid carers in England and Wales. A third said their mental health was bad or very bad, and 29% said they often or always felt lonely. Not only this, but many are also struggling financially, with a quarter cutting back on food or heating. Unpaid carers told The Guardian that they have lost friendships, experienced marriage breakdowns and even been hospitalised or contemplated suicide because of the pressures >
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Advice
My advice for carers 1. Catch up with friends. Talking to others goes a long way to solving problems. Or join an autism support or carers’ support group. Many groups organise activities that can provide a break and give you the opportunity to spend time with people who will understand your situation. 2. Find ways to express yourself and be creative: Try art, drama, journaling, stitching, knitting, pottery, poetry. Join a group, do them with a friend, or wedge these activities into caring breaks during the day. 3. Holiday in a day. We are working towards having a day off a week with support workers covering our son in two two-hour blocks, so that we can have a complete break to go walking, shopping, or to the beach. It’s surprising how much rest you can get from just a day. Can you build a day away? 4. Register as a carer and possibly get a payment towards something for yourself. This seems to vary depending on where you live, but you may find, for example, funding for a reflexology or massage treatment for breaks and respite, and even free holidays for carers and those we care for. Look at mobiliseonline. co.uk, carersuk.org and actionforcarers.org.uk 5. Get a Max Card for free or discounted days out together. This will cover many local attractions and larger ones, such as Legoland. Local authorities and charities may have their own versions. See mymaxcard.co.uk 6. Look at Carefree short breaks (carefreespace. org), which supply unpaid carers with free one- or two-night hotel breaks and breakfast. 7. Rethink provides help to carers supporting those with mental illness and are my go-to here in Dorset, providing a drop-in to share with other carers, and advice and information.
There is also a Rethink respite fund for carers in Dorset (rethink.org). There will be local support that enables you to connect with carers either online or in person – for example, run by Carers UK or by using the National Autistic Society’s Autism Services Directory − autism.org.uk/ directory. 8. Spectrum-holidays.com has assessed each of the properties on its site to ensure they are suitable for autistic people. It has a wide range of accommodation and provides a Spectrum Pack that makes the holiday more accessible and comfortable. Being in an environment like this could enable you to have a break as well as your child/ren. Similarly, kolokodirect.com is a specialist in providing holidays that are sensory friendly and has properties listed worldwide. 9. If you apply for a Family Fund grant (familyfund.org.uk), this can be used towards a holiday for your family. Grants are made to families on low income who are raising a child or young person with a disabling condition. Don’t give up the search for respite. Remember − you need to put your own oxygen mask on first when the plane is going down before you can help others, however counter-intuitive that feels. Help is out there and, in the meantime, we can take small steps to give ourselves a break, too.
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Karen and Jack
of caring for a loved one with limited help. I signed up to be a mother, but not a nurse, therapist, companion, accountant and advocate. This is what is required of us very often as carers today, because of cuts in services, changes to payments and lack of support. The burden of financial responsibility has devolved far more to us, managing personal budgets and being responsible for accounts. We also must advocate for our children constantly, at meetings and appointments and online, to get the provision they need. The pressure of all these things, as well as the sheer exhaustion of providing the day-to-day care, brings many families to breaking point. It leads to relationship breakdown, depression and serious mental illness related to high levels of stress and anxiety and being largely housebound. I feel that being a carer should be an empowering experience, that you are making a positive difference to the quality of a child’s or person’s life. It might be challenging, but it could also be joyful − with shared positive experiences and progress or value added to
that life. However, to give all these things means that after a while you are giving from an empty pot, unless you are getting adequate rest, nourishment, stimulation and care. On a bad day, my experience is of grief, pain, isolation, depression and a sense of loss of my freedom. And, when I feel that way, this will inevitably impact my husband and my son. Having a break away meant a great deal – being able to choose my own activity for the day and not having to work to a timetable. I enjoyed leisurely meals where I could try new foods and eat out if I wanted to. I had time to read, do yoga and go on long walks. I felt much better physically, and had the brain space to have interesting conversations and learn about new things, visiting a couple of National Trust properties and art galleries. It has made me determined to spend more time away, separately from my family if I have to, but not to give up on the search for breaks for myself and my husband – and also breaks that Jack can manage.
Learn what you are entitled to as a carer at autism.org.uk/ socialcare Find your local National Autistic Society branch at autism.org.uk/ branches Read more from Karen at bridport childrenswriter.com
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London Landmarks Half Marathon! If you’re looking for a unique race, join us for the London Landmarks Half Marathon on 7 April 2024. Enjoy live music, theatrical performances and iconic London Landmarks along the route! Sign up today and help create a society that works for autistic people. The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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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 an issue our readers can help with? Get in touch and benefit from the experience of your fellow members
I live in a rural bungalow and it was quiet and peaceful until a new neighbour moved in two years ago. I have been kept awake with yelling and banging at all hours and his washing machine on spin cycle at 4am. I have also been For extensive information and woken by vile verbal abuse. He keeps guidance about harassing me and offering unwanted autism, visit gifts and yet all I want is to be left our website: alone. Because of his disabilities, there autism.org.uk seems to be little that can be done, yet it has a great effect on my wellbeing. Can anyone offer advice? Nick The machine noise through the night may be due to a cheaper energy tariff, which may be essential to use. It may not, but he just doesn’t understand the impact the noise is having on you. Through your conversations, This can be a nightmare situation, but one you could suggest a better time when it would be less I have found is best addressed directly, but of an irritant. also with empathy. Can you build a There are, of course, more formal channels you could relationship with your neighbour, based upon take, by approaching the environment health understanding of each of your challenges and department regarding noise disturbance and a preferences? You explain that he has disabilities, solicitor’s involvement to caution against unwanted but what are they, and how do they impact his life? contact. In the same way, you can explain how the noise and Paul disturbance impact yours. Through an understanding conversation − in my experience − you may be able to Thank you for your advice, Paul. You win a copy of The autistic develop some ground rules. experience: Silenced voices finally heard by Marie-Laure Del If he wants to bring you something, or just call on Vecchio and Joe James. Nick – if your neighbour continues to you, agree when you would be willing to entertain that harass and verbally abuse you, please seek help from Citizens so he has boundaries to work to, for example. Advice and/or the police.
iStock.com/ Liudmila Chernetska
Q A
Help me next!
Is it alright to pay for a private autism assessment (if I have the money to do something)? And is it okay to go ahead with that irrespective of what my GP says? Peter 30 Your YourAutism Autism
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Send us your solutions for a chance to win a copy of Stories of autistic joy, edited by Laura Kate Dale.
By writing to us with either a problem or an answer, you give consent for your letter to be published. We reserve the right to edit submissions.
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Advice
How to… prepare for supported living Fiona explains how she got ready to move to supported living, and Paul Cooke, Deputy Area Manager (Scotland and Northern Ireland) and former manager of our Catrine Bank Supported Living Service, explains how your supported living provider should be helping your young person to prepare for the big move Fiona’s story
I moved into my own supported living flat in January 2022. It’s a two-bedroom flat in supported accommodation where I have my own bedroom and I share the kitchen, living room and bathroom with my flatmate. I prepared by having a couple of pre-visits to see
if I liked the accommodation. I met the support provider and the person I would share my flat with. I got help and guidance from my parents to decorate my bedroom in the flat the way I wanted and they helped me to get used to living with staff rather than themselves. I get some one-to-one support and some shared support with my flatmate and a person who helps us overnight. I have a keyworker who I know well and who works with me two days a week. Before moving into my flat, I had only lived with my parents. One big challenge was getting to know my staff support team and then getting to trust them to help me with what I needed, rather than it just being my parents who helped. And I had to
learn life skills such as washing, cleaning and budgeting. I’d advise others to make sure that you are absolutely ready to move. Be very prepared for lots of changes to happen more often in supported living than at home. Make sure you are moving into an environment that feels very comfortable and is right for your own personal needs and wants. It’s very important to be able to choose your own activities so that you will enjoy your weekly support in your house and the local community. Finally, make sure you are given every opportunity to be fully included and respected with what you want to achieve, and that you have the final say about what is in your support plan.
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Advice
Paul’s advice:
For a successful move, the supported living provider should be: ● Using best practice in communication, and keeping the person who will be moving informed and involved. Often there will be competing priorities at meetings and while planning a transition – no matter what these priorities are, they will be meaningless once a move is completed.
● Creating communication resources bespoke to the person’s specific level of understanding and including visuals as required, eg symbols, social stories and photographs. ● Going at the person’s own speed. Again, there may be other considerations when a person is moving into a supported living placement – difficulties with their current living situation, or time constraints that are important to the funding authority or the service provider. The provider shouldn’t be tempted to move at any speed other than that of the person at the centre of the transition. A rushed transition to suit a third party carries a high risk of the move collapsing. ● Involving as many people as possible. The multidisciplinary team come from different perspectives and backgrounds, all of which are valuable. ● Making it worth the person’s while. They should be thinking about what motivates the person and what they enjoy, helping them make pleasant associations with their new home. ● Asking questions and being explicit about everything, they should never assume something is common knowledge or ‘goes without saying’. This is someone’s life and their future – the provider should be making sure that everything is clear and
not be afraid to say the obvious. To have a move put in danger because someone wasn’t aware they had to buy their own food, or had to apply for housing benefit, is not a position anyone wants to be in. ● Telling the person about supported living itself and not just the flat/house, eg any peers, family visits and recreational things to do. Communication is key. Preparing a person for a move isn’t just about flawlessly executing a plan. We always start our transition plans by telling the person that people move house for good reasons, not because they have done something wrong. Making sure a person knows how great they are, and how much their loved ones appreciate them, means that the transition can start out on the right footing.
Find out more about supported living and other support available for autistic adults at autism.org.uk/socialcare Josh Ward plays Ian Grift in the film Winter 2023 33
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Advice
Understanding and managing eating challenges Clinical Psychologist Dr Elizabeth Shea explains why eating challenges are really common for autistic people, and gives some strategies to help Does Rose’s story sound familiar? If so, that’s because having difficulties with food and eating is really common in autism. In fact, researchers think that at least half of autistic people have some kind of food issue; this is much more than people who are not autistic. As a clinical psychologist, I’ve spent many years working with autistic people of all ages, helping them with their eating problems. I have learned that living with eating difficulties can be very hard – can you imagine another difficulty that happens so often as eating? I’ve also learned that there needs to be more information about why eating issues happen and what can be done to help. I have written this article to explain why autistic people often struggle with eating and, more importantly, to give you tips and strategies to help.
iStock.com/ LumiNola
“I never know when I’m hungry and there are lots of foods that make me sick just by looking at them. I only eat beige foods, such as bread, crackers and plain pasta, and some smooth foods, such as chocolate mousse. I get scared when people ask me to try something new or different, and I can’t cope with eating in busy, noisy places, such as the canteen at college. I wish I could change my issues with food, as I just want to be like everyone else.” Rose, aged 17
The eating challenges in autism
Dr Elizabeth Shea with her latest book
Here are some of the most common issues autistic people have with food and eating: ● eating a very small number of ‘safe’ foods and sticking to these every day ● not noticing the signs of hunger and/or feeling full ● many foods don’t look, feel, smell or taste ‘right’ ● feeling disgusted by the sight/smell of many foods ● feeling scared/anxious about trying anything new or different ● finding it hard to eat with other people or in noisy places ● having routines or rituals that must be done around foods or mealtimes.
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Advice
These challenges are all part of an ‘avoidant and restrictive’ eating pattern, which now has a new diagnosis: Avoidant and Restrictive Food Intake Disorder, or ‘ARFID’ . People with ARFID typically struggle to recognise hunger and are not very motivated to eat. They usually have difficulties with foods of particular textures, smells or tastes, and are extremely anxious about new foods, or foods that look different from usual, and will avoid these. This is true even if the packaging of a food changes. Not everyone who has ARFID will be autistic, but autistic people are definitely more likely to have ARFID than non-autistic people.
or full (this is part of the sense of ‘interoception’ or how we know what is happening inside our bodies). Many autistic or neurodivergent people have sensory experiences such as finding some smells or textures overwhelming or unpleasant, and will avoid foods that trigger those sensory reactions. Add to this the high levels of anxiety about foods and mealtimes, and cognitive (brain thinking) differences such as needing routines and ‘sameness’ that are common in autism, and it is easy to see how autistic people with ARFID eat the same safe foods over and over again.
Why do eating challenges happen?
When do eating challenges become a worry?
Our sensory systems are vital for eating. They help us know what foods look like or how they feel, smell and taste, and that they are safe to eat. Our senses also tell us when we are hungry
For some autistic people, this pattern of eating is okay longplays as they to film get those Josh as Ward Ian are Griftable in the foods easily and are generally healthy. For Winter 2023 35
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Giveaway
We have two copies of Dr Shea’s new book, The autistic teen’s avoidant eating workbook, to give away to members. For your chance to win, please email your name and postal address to YourAutismMag@nas. org.uk by 20 January 2024, putting ‘Eating’ in the subject line. The winners will be announced in the next issue.
others, however, ARFID can become much harder to manage, particularly when there is a life change, such as going to a new school or college, or moving into adulthood. For a few autistic people, eating gets out of control and may even develop into an eating disorder, such as anorexia nervosa. This is where eating becomes so restricted that the person is not getting enough calories to survive, and they do not see how dangerous this can be. Here are some warning signs that eating has become a serious problem: ● The person is restricting the amount of food and is losing a lot of weight. ● Other people are worried about their eating, even though they are not. ● They are doing a lot of extra exercise to lose weight. ● They think they look fat, even though other people tell them they are thin. ● They are becoming seriously ill because of their eating. If any of these apply, it is really important to see a GP and/or another health professional.
What can help?
If, like Rose, you want to change your eating pattern, what can you do? The good news is that there are strategies you can use to better manage your eating. Even better news is that these are often easier than you think. The most important thing to remember is that this eating pattern is not your fault, but connected to being autistic or neurodivergent. Also, these strategies are under your control, so
you can decide if, when, where and how to use them. Here are my top five tips for managing ARFID: 1. Continue eating your safe foods during any period of change. This will help you stay healthy. 2. Schedule regular times to eat during the day, such as breakfast, lunch and dinner, with some snacks in between. This will help if you find it hard to recognise hunger. You can use a timetable or alarm to remind you. 3. Learn to cope with new sights, smells, textures and tastes of food by taking part in a cooking activity, or sitting with a friend who is eating something new. This will help you to get more familiar and comfortable with new foods. 4. Try a new food that is really similar to a safe food you already eat, such as a different brand or flavour. This will help you gradually expand your diet. 5. Use relaxation to reduce anxiety about eating. Try the ‘7:11’ breathing technique for a quick relaxation boost (this is really helpful immediately before trying a new food): ● Close your eyes. ● Breathe in through your nose and count to seven. ● Hold for one second. ● Breathe out and count to 11. ● Repeat this three times.
Sources of support I hope this article has been interesting and helpful. I wish you luck in managing your eating in the future. Here are some good places to look if you want more information: The National Autistic Society – autism.org.uk/eating ARFID Awareness UK – arfidawarenessuk.org The UK’s Eating Disorder Charity, Josh Ward plays Ian Grift in the film Beat – beateatingdisorders.org.uk Winter 2023 37
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Notebook
Everything you need to read, do or see
Empire of normality: Neurodiversity and capitalism
AUTHOR: Robert Chapman PUBLISHER: Pluto Press PRICE: £14.99 (ebook £9.99) VERDICT: An academic but readable account of neurodivergent oppression and liberation It was the study of philosophy, and Marxist theory in particular, that helped neurodivergent academic Robert Chapman make sense of traumatic experiences in their life. Childhood poverty and neglect, mental health issues, youth homelessness and a late autism diagnosis, they realised, are not isolated and individual problems, but systemic issues related to class and neurodivergence that affect many other people too. Empire of normality explores the profound influence that capitalist priorities (such as a productive and compliant workforce) have had on our understanding of human behaviour and psychology, such that the concepts of the ‘normal person’ and the ‘ideal worker’ became essentially the same. This insight drives the book’s history of psychiatry as Chapman seeks to uncover the roots of the dominant ‘pathology paradigm’ that frames neurodivergent people as ‘deficient’ or ‘broken’ and in need of ‘fixing’. Chapman aligns with the alternative ‘neurodiversity paradigm’ (which states neurodiversity as biological fact and rejects the concept of ‘normal’ – and therefore ‘abnormal’ – people) but suggests the radical potential of the paradigm is limited when we fail to consider how neurodivergent oppression is inextricably linked with economic oppression under capitalism. Chapman argues that only through such an analysis can we imagine real possibilities for liberation. Charlotte Gush, Senior Autism Copywriter at the National Autistic Society
Normal schmormal: My occasionally helpful guide to parenting kids with special needs AUTHOR: Ashley Blaker PUBLISHER: HarperCollins PRICE: £16.99 (ebook £8.99) VERDICT: Every page made me smile
Comedian and writer Ashley Blaker has six children, three of whom have a SEN diagnosis. His new book covers the family’s experiences of school, eating, sleep, getting help, playdates and more. Parents of autistic children will recognise everything in here. The endless meetings, all the abbreviations – and the almost impossible task of trying to get your child into your preferred school. All the advice is realistic; doing what works for each child and the family, knowing when to let things go and really just doing what gets you through. Heartwarming and hilarious – a highly enjoyable read. Suzanne Westbury, Editor of Your Autism
Giveaway
We have two copies of Normal schmormal: My occasionally helpful guide to parenting kids with special needs to give away to members. For your chance to win, please email your name and postal address to YourAutismMag@nas.org.uk by 20 January 2024, putting ‘Blaker’ in the subject line. The winners will be announced in the next issue. The winner of last edition’s giveaway for a copy of The Cassandra complex is Debbie Croxall. Congratulations!
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Play today for your chance to win up to £25,000 each week. Each entry is just £1 Join online now: autism.org/lottery Or call our lottery hotline: 0870 055 2291
Join now and help change the lives of over 700,000 autistic people and their families across the UK. The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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Notebook
Inside an autistic mind
BBC World Service bbc.co.uk/sounds/play/p0gck9nm VERDICT: In-depth and insightful documentary Science journalist Sue Nelson shares her personal journey to better understand autism. Inside an autistic mind is a cacophony of brain chatter, anxiety and sensory issues – recreated within a 360-degree soundscape – that impact her life and interactions with others. Sue, who discovered she was autistic last year aged 60, meets
other autistic people, researchers and clinicians to try to make sense of her late diagnosis. Those who offer their own stories and experiences include Canadian actor Mickey Rowe, the first autistic actor to play the autistic lead character in The curious incident of the dog in the night-time; science writer Dr Camilla Pang; and former teacher Pete Wharmby. It’s an insightful listen, including characteristics such as Sue’s bluntness, attention to detail and her experience of anxiety. Suzanne Westbury, Editor of Your Autism
Our six favourite… autism-friendly Christmas events
1
Audley End in Essex
Enjoy a train ride to meet Father Christmas, take an illuminated Christmas walk and watch the Christmas Fairy’s Storytelling Show at these autism and SENfriendly sessions. Book at audley-end-railway. digitickets.co.uk
2
Santa’s Quiet Grotto at Dobbies garden centres
Meet Santa from Friday 8 December. All music will be kept off, twinkling lights removed or switched off and you can choose if your child’s gift is wrapped or not. events.dobbies.com
3
Winter Funland, Birmingham
The UK’s largest indoor Christmas funfair is coming to the Birmingham NEC, with two sensory sessions on 11 December. The crowds will be smaller, lighting reduced and there’s a space to chill out. Book at winterfunland. com/birmingham
4
Enchanted Winter Garden, County Antrim, NI
An Evening of Inclusive Enchantment will run on 6 and 13 December with reduced numbers, lighting and sound levels. Book at enchantedwintergarden. com
5
Winter Wonderland, Clyde Valley
Take a walk through the Wonderland Trail
this Christmas. The quieter sessions will see reduced numbers and music will remain off in the fun fair. Book at valleyviewatgouldings. com/winter-wonderland
6
Christmas at the Royal Botanic Garden, Edinburgh
Enjoy some after-dark festive fun with a magical glimpse of Father Christmas. The quiet session on Wednesday 6 December will see limited numbers to make the trail less crowded. Visit supportcentre.seetickets. com/Access-Info/? Website=christmas_at_ the_botanics
Do you have an idea for our six favourites section? Email us at: YourAutismMag@nas.org.uk
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Snapshot
I’m a… gymnastics coach and marathon runner Connie tells us about struggling at school, starting work as a gymnastics coach, baby son Lenny – and why she’s running the London Marathon for us in April I was diagnosed aged ten after cleverly masking at school. I didn’t want anyone to know I was autistic and found the diagnosis hard to accept. I found things difficult – going to new places, meeting new people, coping with change, which were not helped by also suffering with anxiety and OCD. It impacted my teenage years a lot, and at times, life felt really tough. I found school completely overwhelming and spent all of year 6 as a school refuser. I started a specialist school in year 7, but was a school refuser again by year 9, and spent the rest of the time at home. It’s really hard for autistic girls to find a place they fit in. Mainstream was too big and hard to cope with, yet I didn’t fit into the ‘specialist’ model either. Anxiety stopped me sitting any GCSEs and life was hard. I just wanted to be like everybody else. Gymnastics was ‘my thing’ – it got me out of the door, give or take a few meltdowns. But it was something I was good at, and although I found it hard to compete, I always made it in the end. I also realised I was really good at interacting with younger gymnasts, so I started helping the coaches and lending a hand to run the toddler sessions. After a few years out of school, I saw an advert for an apprentice after-school gymnastics coach. I applied and got the job. I hadn’t told them I was autistic, but my mum encouraged me to be honest and let them know. They couldn’t have been nicer. It’s amazing to be able to do something I enjoy and use my skills to teach others.
My mum would say that having my son Lenny has been the making of me. I remember when I was pregnant saying to her that having a baby would give me purpose – and he has. He is lively, cheeky, doesn’t sleep(!), but I love him with all my heart. He is the best thing to ever happen to me. The past 17 months have been the happiest time for me, and I have proved to myself I can do things like everyone else, if not better! When I was a school refuser, Mum used the National Autistic Society’s helpline and advice, and read the magazine. I wanted to run the London Marathon to raise awareness and money and to prove that autistic people can do anything when they put their mind to it. You can sponsor Connie at bit.ly/ConnieLondonMarathon
42 Your Autism
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Parents, what’s your “brain type”?
Are you an empathizer or a systemizer?
Complete a short survey to help researchers learn if psychological traits can help predict children’s development. This study is open to adults (age 18+) who are the parent of an autistic child. Email: ParentsStudy@medschl.cam.ac.uk Scan here to participate
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Gifts That Do Good eGift cards This Christmas, give one of our eGift cards and both you and your loved one will be part of creating a society that works for autistic people. eGift cards are electronic cards delivered by email. When you buy a Gifts That Do Good eGift card on behalf of a loved one, 100% of the donation amount will go to supporting autistic people and their families. Your gift will help provide expert advice and guidance, connection via our online community, support via our local branches or one-to-one job coaching.
Buy an eGift card today at:
autism.org.uk/giftsthatdogood
44 Autism The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
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