Issuu

YOUR Spring 2021

Left stranded

Readers share their lockdown stories

Plus

World Autism Awareness Week, supported housing, and school phobia

Catatonia and shutdown

Causes, signs and getting help

A better relationship

Working through your differences

YOUR Spring 2021

Lockdown tales

Rich pickings

EDITOR Suzanne Westbury YourAutismMag@nas.org.uk 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 55, 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.

Behind the scenes: The reason I jump

Contents What’s new?

A round-up of the latest news

World Autism Awareness Week 2021

16 04

Making difference work

Readers to the rescue

How to...

Planning for the future

How will you join in?

My diagnosis

Margaret Pelling was diagnosed aged 70

Exploring relationship difficulties

A fear of fire alarms

...respond to school phobia

Life in lockdown

Finding supported living

Interview

Join Our Voice Our Rights in Scotland

Two readers share their stories

We talk to the people behind the new film The reason I jump

Catatonia and shutdown Looking at catatonia in autism and how a breakdown occurs

Campaigns

Notebook

I’m a... litter picker

Things to read, do and see

Volunteer Nick Prince

Studies indicate that may affect 22 in autistic people

catatonia one six

Spring 2021 3

What’s new?

Get in touch!

Our round-up of the latest news and views

Teacher training win in Scotland The Scottish Government has committed to improving autism awareness and training for teachers in schools. This is amazing news both for our charity and for our partners, Children in Scotland and Scottish Autism, and is a direct result of our Not Included, Not Engaged, Not Involved campaign. Based on a survey of 1,417 parents and carers of autistic children, our campaign revealed that many autistic children were not receiving the support they needed to succeed at school and achieve their potential. A third of parents surveyed said their child had been unlawfully excluded. Nick Ward, Director of the National Autistic Society Scotland,

commented: “This package of changes will be life-changing for pupils and new teachers alike. It is the most comprehensive approach to ensuring high-quality autistic education for new teachers in the UK and will ensure that hundreds of autistic children will have a better school experience. “We must now ensure that all teachers have the opportunity to undertake the training and that it is informed fully by the experiences of autistic children and their parents.” Under the new measures, Initial Teacher Education will now include autism awareness content. Reference to autism awareness will also be included in the Professional Standards for Teachers.

A community of good practice will be created to share autism awareness tools and resources across the country for teachers. Thank you to everyone who took part in our campaign to make this happen. You can read more at www.autism.org.uk/Scotlandteacher-training ● If you live in Scotland, turn to page 37 to see how you can join the new Our Voice Our Rights campaign.

Results of our magazine survey Thank you to everyone who completed our readers’ survey. We had 536 responses and your feedback is invaluable in helping us develop the magazine, ensuring it is useful and informative to you. Some of the findings were: ● Seven in ten of you said you usually read the magazine cover to cover or read the majority of it.

4 Your Autism

● You rate the visual quality of Your Autism highly and think the articles are written using language that is straightforward to read and understand. ● Autism research and real-life interviews are the sections you like best, followed by advice features. ● You would like to see more articles on schooling advice, autism in adulthood/older

adulthood, mental health and autism, employment advice, legal/financial information and how to access support you are entitled to. You also wanted more personal stories from autistic people and case studies of a range of autistic experiences. In this issue, we bring you articles on relationships, school phobia and catatonia, which were all requested in the survey.

News

Important changes to the Mental Health Act The Government has responded to our calls to change mental health law in England and Wales. In January, the Government published a plan to change mental health law in England and Wales. This is a huge step forward in the fight to stop autistic people being stuck in mental health hospitals. It will change the law on when autistic people can be sectioned under the Mental Health Act, which we and hundreds of thousands of campaigners have been calling for, for years. Plans include changing the definition of ‘mental disorder’ in the Mental Health Act so that it does not include autism. The Government has also proposed changes to the ‘detention criteria’. We know that autism is not a mental health condition, and this would result in fewer autistic people being unnecessarily sectioned. These changes are definitely a step in the right direction. However, some of them could take years to be put into action, and we have told the Government that autistic people and their families can’t afford to wait that long. What do you think about the new proposals? Have your say by completing the Government’s survey, open until 21 April 2021. You can find it at: bit.ly/mental-healthact-proposals Visit our website to find out more at www.autism.org.uk/ mental-health-law

Carol Homden to step down as Chair

Carol Homden will be stepping down later this year as Chair of the National Autistic Society’s Board of Trustees after nearly ten years. We have started to search for a new Chair to lead the Board’s oversight of our charity. A panel of autistic people representing members, campaigners, partners, volunteers and staff members will be involved in the recruitment process.

A National Disability Strategy

The Government is developing a National Disability Strategy, which aims to “make practical changes to policies which strengthen disabled people’s ability to participate fully in society”. It’s important it gets this right and that the strategy reflects the experiences and challenges of disabled people, including autistic people, accurately. You can contribute your views until 23 April at bit.ly/UKDisabilitySurvey. Read what we are calling for at www.autism.org.uk/ disabilitystrategy

Members’ Facebook group

Handing in our petition in 2019

If you’d like to talk to other members online to share advice, why not join our members’ Facebook group? Join by going to Facebook and searching for ‘National Autistic Society Members’. Spring 2021 5

News

Tackling isolation in Wales Our recent peer support survey shows that autistic adults in Wales are eight times more likely to report being chronically lonely than the general Welsh population. Without support, this isolation can have an extremely detrimental effect, not least on mental health, with one in four autistic adults surveyed reporting they suffer from a severe mental health condition. Peer support groups can provide an accepting environment for people with shared experiences to come together. Attending a group can help you connect with others, improve your confidence and feel a sense of belonging. We at National Autistic Society Cymru, with support from the Welsh Government, are aiming to increase the number of peer support and social groups available to autistic adults across Wales, to help reduce social isolation and improve mental health. Following our research, we will be working closely with autistic adults and volunteers, learning from what already works well, and supporting them to develop a

range of sustainable, peer-support activities that meet the needs of autistic adults in Wales. If you’d like more information on our peer support project, or to set up or attend a peer support group in Wales, please contact Jennifer.abell@nas.org.uk

Autism at Work Summit success Together with some of the UK’s leading employers, we are helping to change employment opportunities for autistic people. Our Autism at Work Summit on 4-5 March saw us bring together like-minded businesses to talk all things autism at work. Household names, including the Financial Times, JP Morgan, SAP, EY and Sky, joined us on the day. Research suggests that with just 16% of autistic adults in full-time paid employment, there is a huge waste of talent. With the Autism

6 Your Autism

at Work Summit, along with our other employment projects – including the Autism at Work programme – we are working to change this stark statistic. The summit was an inaugural event for our charity and was introduced by our ambassador Chris Packham. The online event brought together employers to showcase initiatives aimed at increasing the numbers of autistic people in employment, including personal stories from autistic people.

Chris Packham introduced the event

Huge thanks go to our sponsors, featured opposite, for their support. You can find out more about our programmes at www.autism.org. uk/autismatwork

Fundraising

World Autism Awareness 1 2 0 2 k Wee

2021 wareness Week World Autism A in us from is on its way! Jo ril for a week of 29 March-4 Ap raising and celebration, fund r autistic people campaigning fo es and their famili

This year’s celebrations and events may be different from previous years, due to coronavirus... but fear not! There are still plenty of ways to fundraise and raise awareness from home, and help create a world that works for autistic people. From taking on our Super 7 Challenge, to hosting an online quiz – or even opening your own online pub – we’re sure you’ll find the activity that’s right for you. Looking for inspiration? We’ve put together a collection of home-based activities and ideas.

Take the Super 7 Challenge Step up to our ‘Super 7’ virtual challenge (www.autism.org.uk/ 8 Your Autism

Super7) and raise money to help the 700,000 autistic people across the UK. Choose any activity that fits the theme of ‘seven’. Whether it’s walking, running or cycling 7km, baking seven cakes, or creating seven pieces of artwork – you can do whatever suits you!

Set up a Facebook fundraiser Creating a Facebook fundraising page is a great way to raise money. It’s really simple to set up. Ask your friends and family to donate, and spread the word on social media.

Host a virtual contest or stream-athon

Why not create your own virtual contest? Choose a task – this could be anything from cake baking to spectrum-themed photo taking. Ask friends and family to donate and take part. Organise an online judging day to decide the ultimate winner! Are you a keen gamer? Now’s the time to put your skills into play with an online stream-athon fundraiser.

Fundraising The Ng family took on our challenge last year

Our Home Heroes so far If you’re looking for fundraising ideas, why not follow in the footsteps of our incredible Home Heroes? Here are some of our highlights from last year.

From video games to good old tabletop games, we’ve put together some guides at www.autism.org. uk/waaw to help you get started.

Get schools involved

We’d love schools to join us this World Autism Awareness Week to help improve understanding of autism among students. We have free downloadable resources for all age groups to help students learn about autism. Tell the teachers you know! ● Visit www.autism.org.uk/waaw for more information and ideas. We wish you a very happy World Autism Awareness Week!

Fundraising fun with Jake, Kerry and Daniel We were really impressed by Jake, a seven-year-old autistic boy, who celebrated last year’s World Autism Awareness Week in style. Jake and his family rose to the challenge with a week of home-based fundraising activities – from blowing bubbles to making a giant autism awareness banner – and a good time was had by all. The amazing Ng family (and Muffin the dog) Autistic teenager Brendon Ng took on our 7k for 700k challenge, along with his family. Accompanied by their faithful therapy dog, Muffin, the Ng family ran, walked, cycled and swam 7k, while raising more than £3,000 for our charity. They’re already planning this year’s Super 7 Challenge, so be sure to watch this space! Opening the Nobody Inn with Tony, Danny and Cassie This ingenious trio created their own online pub (bit.ly/NobodyInn) during the March 2020 lockdown. The Nobody Inn is a virtual community or ‘pub’, open to all – complete with live music, keep-fit classes, and plenty of pub banter! To raise money for our charity, Tony created a virtual ‘tip jar’.

Spring 2021 9

My diagnosis

“My GP put my issues down to quirky personality” Margaret Pelling sought a diagnosis aged 70 The day of my autism diagnosis in 2018, at the age of 70, was one of the happiest of my life. Finally, I felt valid as a human being. I wasn’t the neurotic loser I took myself to be, I was just different. Picture this: a small girl in tears in front of a large woman threatening to smack her if she didn’t say her name. That was my first day at school, too terrified to tell a teacher my name. From then on, school was one challenge after another. I just couldn’t make the other kids out. It got worse in the teenage years when I had no idea how to chat about boyfriends and pop music and make-up. Not that I was actually interested, I just wanted to fit in. I heard girls saying how odd I was behind my back. It was my brains that got me through school. By the time I went to university, I was beginning to learn a few survival tricks: how to ‘act’ my way through social situations. I still made mistakes. At times it felt like skating on thin ice. And it was exhausting! At the end of an evening’s socialising, I was mighty glad to get back to my room and shut the world out. Now I can usually pass for neurotypical. I’m happily married, I’m a mother and a grandmother. My husband doesn’t mind too much that I’m geeky, obsessive and routine-driven. Woe betide if something unexpected is sprung on me! I’ve worked,

but not in the right job for me, I now realise. Too often, I’ve still been that terrified small girl. I’m no stranger to agoraphobia and chronic anxiety, and they’ve affected my health. I suspected years ago that I might be on the spectrum. My GP at the time put my issues down to quirky personality. But the need to find out the truth of who I was became more and more pressing. It wasn’t straightforward, getting a diagnosis. Autism Oxford advised me to go to the National Autistic Society’s Lorna Wing Centre if I was able to self-fund. The NHS service in Oxfordshire at that time was only available on Skype, but I needed the assessor to be in the room. I went to the Lorna Wing Centre, and it was some of the best money I’ve ever spent. I make no secret of being autistic, but people’s reactions range from bewilderment through to dismay. People are generally pretty ignorant, it’s fair to say.

Contact our Lorna Wing Centres at www.autism.org. uk/diagnosis Want to share your or your child’s diagnosis story? Email YourAutismMag @nas.org.uk Spring 2021 11

Real life

Life in lockdown We know many of you have faced huge struggles during the pandemic. Here, two Your Autism readers share their stories

Jo Corbyn saw her six-year-old daughter Darcie’s eating deteriorate and her anxiety rocket, especially when she couldn’t attend her special school It’s been really tough. This is technically Darcie’s second lockdown. She wasn’t affected by the one in November and we hoped she would be able to go to school this time as well. She attends a special school, but they’ve changed their criteria, and only children of keyworkers and extremely vulnerable children can attend. It’s really frustrating because, in the first lockdown, Darcie regressed a lot. She stopped eating and would play with her food for visual effect. If she had little bits of sausage, she would sprinkle them around her plate. We sought help from a dietitian, but couldn’t

see her usual one. The person we did see didn’t really understand Darcie, and suggested she try baby food and toddler snacks. I told her that wasn’t going to work! She became really obsessed with wanting to do the same thing. So, just pouring water from a tap; she’d constantly be in the kitchen, stimming at the water flowing. She wanted to do the same in the garden – just water play, not really engaging or being with her siblings. Because we weren’t going out at first, it became difficult to get her out of the house. When we did go out, she had meltdowns – her anxiety was through the roof and she was really scared. Then it was trying not to walk a route that we would usually walk, to school or the shop, because she was getting so confused about where we were going. In the house, we kept to the best routine we could for her, but Darcie’s one of eight children and needs a lot of care and supervision. Then, trying to engage my five-year-old and the others to do home schooling… it hasn’t worked at all.

Pressure

Jo and Darcie Corbyn 12 Your Autism

We feel abandoned. There’s pressure on schools, but it’s almost like they forgot about us. We can’t access short breaks or personal assistance for Darcie, either. Darcie’s assistant works at her school, so I can’t even get her to come and help during the day because she’s helping there. As everything is closed, it is just the home environment. Even with the best will in the world, to get Darcie to sit and do something educational, it’s just non-existent. She wants to be on her iPad all day, obsessing over Hey Duggee or playing the different apps – home is home and school is school, and she won’t mix the two. Her temperament at home changes quite a bit. We would usually go for a walk, and Darcie would sit in her wheelchair or wagon,

Real life

Sian Gladding’s daughter Eden, 21, saw her college placement suddenly stop and she didn’t know why, leading to her OCD worsening

Jo’s best advice Just do what you feel you’re capable of doing, and put less pressure on yourself. It’s important for everyone to take a step back and think ‘this isn’t going to work’, or ‘this isn’t happening today’, and just find something else. Take each day as it comes.

and have some time away from the iPad and TV. That would help her regulate herself. But if the weather is really bad, we have to stay indoors and she will get frustrated. I do worry about her mental health. How much is she being affected by this? We just don’t know. She was accessing so much therapy at school, using the sensory room and hydro pool, having horse-riding lessons, so for all of that just to stop... There’s probably something going on in her mind as to why. How do you even begin to try to explain that? During the lockdowns, the National Autistic Society branch I lead in Norwich sent out care packages to the children, with activities, slime, toys and books donated by the local bookshop. The parents really appreciated that they were being thought of, and weren’t alone. We kept in contact with people; if they had questions, we’d point them in the right direction. To know we were here was reassuring for them.

When the pandemic started, Eden was in her final year of a college placement – where she was going out in the community – and had a structure and routine. The pandemic hit and her college had to close. Her day services had to close, too. We were kind of hit with nothing. Social services said, “if you need help, call our number”, but it went back to the same social worker team my daughter was under and they already knew of the struggles. So, basically, my daughter’s whole lifestyle fell to pieces. Everything stopped for her and she didn’t understand why. Eden needs 2:1 support when out in the community, so we had a really bad situation where I had to stop taking her out. It just wasn’t safe for me to do so. One time, I took her on a dog walk, but she wanted to walk a very long way and we ended up about six miles from home. I called my brother, but she wouldn’t get in the car to go home. We didn’t know what to do – Eden is super strong. We did eventually get her in the car, but it was so difficult.

Eden and Sian Gladding Spring 2021 13

Real life

Sian’s best advice Talk about it. Speak to family and friends, and let people know how you feel. Always take the initiative and keep pushing for services.

My daughter’s lifestyle fell to pieces. Everything stopped for her and she didn’t understand why Eden was due to finish college in July, and we were waiting for a new care package to be signed off by the county council, stating that she requires 1:1 care at all times and 2:1 in the community. Coronavirus had such a huge impact that we couldn’t get that care package signed off until September. So, my daughter had absolutely nothing. I was fighting the council, and they were blaming it on COVID-19. During that time, I was granted nine hours a week of support-worker time. They tried to take Eden out because she was getting no exercise. They took her to the area she was familiar with around Norwich, but one time she ran away. They called the police, and Eden was actually restrained by police officers. I had them come to my door. They were really lovely to me; they said “we just hope you get the support you need”.

Knock-on effects

There were consequences, physically and mentally. Eden had a blood test in November and was severely lacking vitamin D, so she’s on supplements. She’s got really bad OCD in some things and craves going to the shops every day, so I couldn’t keep her at home. We had to go, otherwise she would have bashed my door down. We did get her care package signed off, so we are going forward now, but Eden’s OCD is still very prominent. We’re just all working together to give her the best we can right now. She can go to day services now, as long as no-one tests positive. It’s been really hard. Eden wanted to do what she craved and couldn’t, without understanding why. It affected my mental health and anxiety, because I couldn’t give my daughter what she needed. There have 14 Your Autism

Eden was due to finish college last July

been times when I thought – these things had been going on for a long time, we haven’t come out the other side yet and I don’t know if I can do this anymore. But I get support from people I know and just carry on. Eden will always have challenges, but after everything was taken away last year, we’re just building it back up as best we can. We know it is difficult to cope with coronavirus and the impact it is having. Read our latest guidance and advice at www.autism.org.uk/coronavirus Find out what we’ve done during the crisis to safeguard your rights at www.autism.org.uk/ fighting-for-your-rights Search for your nearest branch at www.autism.org.uk/branches

Interview

“It’s easy to assume that, because someone can’t speak, they also can’t hear; it’s just not true” We talked to Stevie Lee, producer of new documentary film The reason I jump, and Leo Capella, from our charity, who advised on the film How did the film of The reason I jump come about?

Stevie: I heard an adaptation of the book on BBC Radio 4, and it was like being punched repetitively. I recognised so many aspects of my son Joss’s behaviour: cupping his ears, which he’d done since he was tiny; his beautiful joy in nature, water, light. What it said to me was that I didn’t know my son as well as I thought – and although Naoki is very clear, at all times, that he speaks only for himself, there was enough in it that I just couldn’t let it go. I photocopied the book’s pages and stuck them all over the house because I wanted anyone who was with Joss to note so many different parts of it. My husband and I went around telling everyone about it. 16 Your Autism

Interview

The reason I jump: the inner voice of a 13-year-old boy with autism is a memoir by Naoki Higashida, a non-verbal autistic person from Japan. It was first published in Japan in 2007. The English translation, by Keiko Yoshida and her husband, English author David Mitchell, was published in 2013. Now, the book has been made into an amazing, immersive documentary film featuring Naoki’s thoughts and the stories of five non-speaking autistic people from around the world.

We both work in film/TV, so it was a natural extension to try to attract more people to the book by making the film.

The film features five nonverbal autistic people, including your son Joss. Can you tell us a bit about each person?

Stevie: When we started on the film, Joss was younger [he’s 16 now] and his experience of the world was much more peaceful and joyful. He was very happy with who he was. But in the time it took to make the film, puberty hit. Maybe Joss realised things were harder for him than they were for most people, and he became quite angry about that – which is exactly how I would feel in his place – and his frustration really grew. I never in a million years thought he’d go to a

I recognised so many aspects of Joss’s behaviour like his beautiful joy in nature

residential school because it would suit him better. Jestina is a girl in Sierra Leone whose parents, Mary and Roland, are extraordinary powerhouses. Mary and I would agree, the stigma about autism isn’t so different here, but it’s much more blatant there. They fought incredibly hard not just for Jestina, but also to set up a school for other autistic children in Freetown. Amrit is an artist in India. Her work is quite extraordinary. Ben and Emma, in America, are lifelong friends and advocate very strongly for education. They communicate using keyboards and letter boards.

Leo, what was your role as an autism consultant on the film?

Leo: We advised while it was shooting, and reviewed versions of the film before it was unleashed on the world. It was us saying “here’s where you’re going, but here’s where you can go a bit further”. It was an advisory group of autistic people, from different organisations, providing a voice on how to get the balance right.

In the film, Ben says: “We can change the conversation about autism by being part of Spring 2021 17

Interview

the conversation”. Is that the central aim of the film?

Stevie: Initially, we just wanted to get more people to read the book, but then it became all about just that – getting the views and experiences of autistic people heard, and not just Naoki’s, and we had this indispensable panel of autistic people advising us. In those meetings, people felt they could be completely honest about how autistic people were being represented. When Ben said that, he was saying “I’ve got a voice, I can’t vocalise it, but I can write it” – so making the point that autistic people should be able to have control of their lives and the way they are represented. Leo: I think the clear aim of this film is that it shows the capacity of people, whether they are verbal or non-verbal, and their potential for

speaking for themselves the way that they do. Stevie: Exactly that. Leo has continued to advise on the film in terms of outreach. We will always know the film is the film; it’s what it can achieve that matters, and how it can be diced and spliced and used to change people’s attitudes and wake people up. A lot of amazing outreach documents have been prepared, and they all carry this message – which is the presumed competence of nonverbal autistic people. The most important thing one can take from it is to presume that competent thinking.

How is the film going to be used to get that message across?

Stevie: Not every autistic person jumps, but my son, Joss, happens to

jump as he walks – and people stare at him. The most basic misapprehension is that he doesn’t notice and he’s not affected by [people staring]. If I could just get people to understand that he’s just another person and that’s absolutely what he does, just as they would… it’s that kind of really basic understanding. I hope the film encourages people to be a little less judgemental based on the fact he’s got a slight leap to his step. Leo: Hopefully, the resources will get people thinking deeply about autism. In the UK, thankfully, we’ve got a better way of discussing autism – but there’s more to do. The part of the film that resonated with me the most was Jestina’s experience. There’s a pretty tough sequence about what happens to disabled people in her country, which is particularly unpleasant and raises the spectre of eugenics. We are confronting those ghosts directly and dealing with them.

What did you learn about autism from The reason I jump?

Jestina in The reason I jump 18 Your Autism

Stevie: There’s a chapter where Naoki discusses whether or not autistic people want to be left alone. My son loves people, but he would disappear after we had people around – and we’d think, if he wants to be on his own, that’s totally fine. Then I read the chapter where Naoki describes leaving social events because he felt like he was too much trouble, not because he wanted to. Jerry and I then did encourage Joss to stay at the table, and he loved it. When I read the book, I kept repeating in my head, ‘I’m sorry. I didn’t know’. Joss was nine by then, and I’ve never enjoyed

anyone’s company more than his, but I’d made an assumption, based on a kind of myth, that he would want to be on his own. Busting a few of those myths was part of this process. It wasn’t news to me that autistic people love as fiercely as neurotypical people, but people would say to me, “he gives the impression of really loving you”. It’s like, yes – because he does; I’m his mum, you know? That leads to a common misapprehension that autistic people have no empathy. They might have varying ways of showing it, just like neurotypical people – they may be more empathetic or less empathetic. The other misapprehension I had was that Joss’s expressive language in some way reflected his receptive language. Joss’s receptive language is as normal as mine – he’s receptively fine. I’m not judging people for that. It’s easy to assume that, because someone can’t speak, they also can’t hear; it’s just not true. Leo: There is this myth that autistic people can be ‘trapped in their world’ because of a lack of empathy. The reality is that, in whatever way, we’re trying to engage with the world. I think the cinematography on The reason I jump is going to give an insight; we are trying to engage, we are interpreting the world. Don’t think that we’re – to paraphrase the title of a science fiction book – in a Cave of Steel; we’re actually here.

Can you tell us more about the film’s cinematography and sound?

Stevie: The film is designed in 360-degree sound to make it really immersive. It’s not to say this is exactly how autistic people

Stevie’s son Joss

There’s a common misapprehension that autistic people have no empathy

experience the world; it’s more to slightly discombobulate people. My son puts his hands over his ears because he can’t filter out a lot of the really hideous sounds around him, so we were trying to make it a hypersensitive experience. It’s what a film could do to try to make lay people see and hear the world in a different way.

What’s the response been?

Stevie: In the USA, where it’s been

released, the reviews are so good that it looks like I’ve been bribing people! It’s also won audience awards at festivals. The film isn’t really for autistic people – if they see it and recognise some things in it, and hear Naoki’s voice, that’s amazing – but the primary thing is to reach people who don’t understand autism. Leo: There have been documentaries about autism before – for instance, Life, animated. What this one has is its diversity of voices. It’s about putting some stereotypes to bed – really making people think and actually see this diversity. Hopefully, people are going to come out of the cinema and think twice when they see someone who’s verbal or non-verbal, particularly who’s out of sorts or just being themselves. Stevie: Naoki is making a very straightforward plea for understanding. He relentlessly comes back to “please don’t judge us from the outside only. My feelings are pretty much the same as yours”. He’s very clear about why he puts his words down; he’s just asking for some compassion – and I guess that’s what the film is doing; just asking for some understanding. Leo: If we can get more people seeing and understanding, that will improve the standing of autistic people dramatically. And who knows? Non-verbal disabled people generally, too. That will be a huge prize.

The reason I jump will be released in the UK in Spring 2021 by Picturehouse Entertainment. Check our social media channels for the release date.

Spring 2021 19

Health

Catatonia affects a person’s ability to move, speak or respond. Dr Amitta Shah, Consultant Clinical Psychologist, explains how it can affect autistic people

Catatonia and associated shutdown in autism In this article, my aim is to inform readers about the possibility of a breakdown, in the form of catatonia and shutdown, in an autistic person who shows deterioration in functioning, behaviour and speech. Consider the following stories of two autistic people: 1. AX was a young girl attending mainstream school. She gradually became selectively mute and was unable to attend school regularly because of her difficulty getting out of bed and getting dressed, and being unable to get into the car. Retrospective information from reports showed that there 22 Your Autism

had been a gradual decline in AX’s abilities to carry out simple activities, such as getting her lunch, taking things out of her school bag, and getting on with work independently, which she had previously been able to do. She started needing increasing prompts. There were reports of her not being able to eat or drink, or go to the toilet while at school. Unfortunately, these difficulties were not recognised as signs of autistic catatonia until AX had a breakdown and was unable to continue her education at school. 2. BX was an autistic man who loved life, travelling independently, and participating in a range of work and sports activities. After leaving school and attending mainstream college, BX started showing

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Health

unusual and uncharacteristic behaviours. He became slow, took hours to eat his meals, and showed reluctance to participate in activities he used to enjoy. He was treated with anti-psychotic, anti-depressant and anti-epileptic medication. His decline continued until he was unable to get out of bed or a chair, or carry out any voluntary movements or actions without prompts or assistance, and he became incontinent. He developed swallowing difficulty (dysphagia) and lost a significant amount of weight. Fortunately for BX, a care worker raised the possibility of autistic catatonia. This was not dismissed, but investigated and assessed, and confirmed. It resulted in a different interpretation, treatment and management of BX’s difficulties and decline, with a good outcome for BX and his quality of life. These cases illustrate how easily the signs of autistic catatonia can be missed or misinterpreted, and the need for greater awareness and timely recognition.

Catatonia in autistic people

Catatonia is a complex and devastating neuro-psychological condition that can affect autistic children and adults across the spectrum. Research indicates that it may affect as many as one in six autistic people, playing havoc with their wellbeing and lives, and the lives of their family. It is not restricted to those with high support needs and learning disabilities, but can affect autistic people who do not have additional needs. Although awareness is increasing, autistic catatonia is still being missed, misdiagnosed,

Dr Amitta Shah is a Consultant Clinical Psychologist with 40 years of clinical and research experience in autism. She currently works as an Independent Consultant at Leading Edge Psychology and as an Associate Consultant with our Lorna Wing Centre.

Giveaway

We have five copies of Dr Shah’s book Catatonia, shutdown and breakdown in autism: a psycho-ecological approach to give away to members. For a chance to win the book, email your details to YourAutismMag@nas.org.uk by 20 April, quoting ‘Catatonia’. The winners will be announced in the next issue.

or dismissed. Many professionals think of catatonia in its most severe and acute form, characterised by stupor, mutism and posturing. This does occur in autistic individuals, but it is rare. Catatonia in autistic people is a gradual deterioration and disruption of many aspects of voluntary movement, speech, functioning, level of activity, independence and behaviour. It is my plea to autistic people, parents, carers, teachers and multidisciplinary professionals to be aware of the ways catatonia can manifest itself in autism. This will lead to early shared understanding and interpretation of the complex patterns of difficulties and deterioration in the individual before it becomes too late. When I, retrospectively, look through reports of people referred to me, I often find that the behaviours relating to catatonia had been present, observed and recorded, but not interpreted as such, so the individual had not had the appropriate support early on. The manifestations of catatonia and/or shutdown are often early signs of an autistic individual not coping, and being unable to communicate this or ask for help. In some people, the side effects of certain psychiatric medications can trigger or exacerbate catatonia-type difficulties. If these are recognised and interpreted correctly early on, Spring 2021 23

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it may be possible to make changes to the person’s environment, programme, demands or medication to prevent anxiety, stress and overload, and break the spiral of escalation of deterioration and breakdown.

Signs of catatonia

Any of the following can indicate a need to consider the possibility of catatonia in an autistic person. It is not a comprehensive list or checklist, but these are common observable phenomena that are often missed or misinterpreted. 1. Slowness: during walking, speaking or in responding. 2. Difficulty in initiating movement: difficulty getting up, or getting in or out of a car, or stopping walking suddenly and appearing ‘stuck’ at doorways, kerbs and stairs. They may be unable to open their eyes voluntarily and may have to keep their eyes shut for long periods. Some individuals develop difficulties passing urine without prompts. 3. Difficulty in stopping movement: some people may appear ‘stuck’ in a loop of repetitive actions. 4. Speech difficulties: the person may become mute, either all the time or selectively in some situations. 5. Eating difficulties: reduced food intake, or taking hours to finish a meal, and losing weight. The underlying issue may be chewing and swallowing (dysphagia) difficulties because of the catatonia. 6. Periods of ‘shutdown’ characterised by the person being unable to respond or communicate: some individuals curl up in a ball, or stay in bed and seem cut off from everything around them. 7. Increasing need for prompts: the person may require intermittent or continual prompts (verbal or physical) to move or to complete any activity or self-care routines. 8. Posturing: unusual and/or awkward postures, such as crouching, lifting one leg or arm, or standing on one leg and staying like that for long periods, sometimes for hours. 9. Deterioration or change in self-help, personal care skills: some may develop 24 Your Autism

Catatonia in autistic people is a gradual deterioration and disruption of many aspects of voluntary movement, speech, functioning, level of activity, independence and behaviour incontinence as a result of being unable to initiate going to the toilet. 10. Reluctance, slowness or inability to participate in activities enjoyed previously. 11. An increase in repetitive or ritualistic behaviours or uncharacteristic behaviours.

Signs of autism breakdown

This can occur with aspects of autistic catatonia or on its own. Main indicators are: ●e xacerbation of the person’s autistic characteristics – for example, social withdrawal, communication difficulties, increased repetitive and ritualistic behaviour, and sensory sensitivity ●d ecrease in tolerance and resilience ● i ncrease in distressed behaviour or shutdown ●d ecrease in concentration and focus ●d ecrease in engagement and enjoyment.

Seeking help

My advice to anyone who suspects catatonia and/or associated breakdown in an autistic person is to raise it with the school, care team or multidisciplinary team concerned, so that it can be investigated and managed appropriately from the earliest time.

Read our guides to catatonia and hear more from Dr Shah at www.autism.org.uk/catatonia Further information can be found in Dr Shah’s book Catatonia, shutdown and breakdown in autism: a psychoecological approach.

Relationships

Poor communication can affect AS/NT relationships

Making difference work Couple counsellor Maxine Aston explores common relationship difficulties where one person is autistic I am going to presume that, if you are reading this, there is a chance you are in a relationship in which one or both of you are on the autism spectrum. So, why should it matter to a couple that one of you has autism? My work and research over the past 23 years has shown me that ‘ignorance is not bliss’ and having an awareness, acceptance and understanding 26 Your Autism

that autism is playing a role in the relationship can make the difference between a couple staying together or not. Although all relationships can encounter difficulties, research has shown that there are some specific challenges that frequently occur between an autism spectrum (AS)/ neurotypical (NT) couple. Difficulties in spontaneity, an excessive preoccupation with an interest, or difficulty expressing emotions are some examples of issues that can occur. If a couple is unaware of the underlying cause of these issues, or why they seem to repeat themselves continually in the relationship, they will, in time, blame each other for the problems being experienced. Blame can quickly lead to resentment, defensiveness and a negative reaction to the other’s manner or behaviour. The long-term consequence of this, for both partners, could result in low self-esteem, depression, selfneglect and, if unrecognised and unsupported, a breakdown in the relationship. For example, I was approached by a couple who had only recently discovered that the

Relationships

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husband was autistic. They had been together for ten years and, in that time, he had only told his wife that he loved her twice – once when he proposed and again at their wedding. Throughout the session, she cried almost continuously, saying she felt unloved because he did not make her feel loved, and if he loved her then he would tell her so. Throughout the session, her husband said little. He did, however, hand her a tissue from the tissue box every time she cried. It was not long before the small wastepaper bin was full of used tissues. Seeing this, I asked her how many tissues she thought were in the bin. She looked embarrassed and apologised for using so many. I reassured her the tissues were not a problem, and asked my question again. “Well,” she replied, “quite a lot.” “Yes”, I said “and every time he gave you a tissue, that was his way of saying I love you. Words are not the only way love is expressed.” I will never forget how this couple hugged in my room, and I think we all had tears in our eyes. The majority of the couples I have encountered love each other very much. Lack of love is rarely the problem – the problem is understanding how the other partner expresses their love and valuing that their way, although different from yours, is equally relevant. The discovery of autism in the relationship can provide answers for many of the misunderstandings a couple has experienced

Understanding how your partner expresses their love is important

Maxine Aston has an MSc in health psychology and has worked as a couple counsellor, specialising in autism and relationships, for more than 20 years. She now runs her own counselling centre in Coventry and is the author of five books on this topic. Maxine’s book The other half of Asperger syndrome (2001) was the first book published worldwide on relationships in which one partner is on the autism spectrum.

and can completely change the expectations held by each partner. Awareness removes the blame. By learning and understanding the differences in thought processing, and applying new strategies and coping skills, a couple can learn to appreciate each other’s strengths and recognise their limitations.

Communication issues

Poor communication or lack of communication is the number one issue in almost all AS/NT relationships, and needs to be addressed. The strategies and ways to improve communication are straightforward and logical. With time and patience, communication can be greatly improved. I strongly encourage couples to find alternative ways to communicate besides the spoken word. Verbal communication can be easily misunderstood and, for someone on the spectrum, trying to interpret quickly all the nuances, expressions, voice tone, double meanings and emotions in intimate communication can be stressful and prone to misinterpretation. For example, Bob is a 50-year-old GP, and Mary is a 52-year-old teaching assistant in a primary school. They have been together for 11 years, and it is two years since Bob was diagnosed as autistic. Mary loves her job, but this had been a Rachelparticularly with baby Bonnie stressful day. She was dealing with an issue over bullying that had occurred Spring 2021 27

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in her class, and it was playing on her mind. She desperately wanted to talk it over with Bob. This is how the conversation went: Bob (noticing Mary was quiet) asked her: “Are you OK?” Mary replied, distressed: “Not really, it has been a very taxing day. I felt so sorry for this young boy. On days like today, I wonder how I manage. At one point, I could have cried.” Bob, feeling anxious because he did not know what Mary wanted from him went straight into ‘fix it’ mode, saying: “Well why don’t you just leave. It’s not as if we depend on your wage; in fact, it’s hardly worth the time it takes you to drive there.” With this, Bob – feeling he had solved the problem – made a hasty retreat into the study. The result of this was that Mary was left feeling alone, unsupported, undervalued, and worse than she felt before. Bob, on the other hand, was left feeling he had fixed the problem for Mary and had reassured her she did not need to go to work because his wage could provide for both of them. Situations such as this are not uncommon, but could easily be avoided if, for instance, Mary had started the conversation with, “I have had an awful day at work, can I share it with you? I don’t want you to fix it. I just want you to sit with me and listen.” This would have told Bob what was expected of him. Equally, Bob, if in doubt, could have asked Mary what she wanted from him.

Sharing laughter unites partners

The autism couple’s workbook (JKP) by Maxine Aston is out now, covering special interests, routines, sexual issues, sensory sensitivity, alexithymia, parenting, counselling, diagnosis and communication. It offers a variety of worksheets, strategies and coping skills that aim to improve communication and many other difficulties that couples may encounter.

There will be times when your partner will make absolutely no sense to you whatsoever – and, equally, times when you make no sense to them. If the couple can accept this and understand it is not personal, but simply being different, it will help them make it through. If a couple has a good sense of humour, that will be a huge bonus. Being able to laugh at oneself is a positive stress reliever. Being able to share laughter together unites partners, drawing them closer in a way that can feel romantic, empathetic and secure. Good relationships take time, patience and commitment. They are about two people coming together and accepting that each is different. No one person can totally fulfil the needs and desires of another. Love works when expectations are realistic, assumptions are checked out, and defensive reactions are recognised and addressed. AS/NT relationships have, in my opinion, as much chance of working as all couple relationships – and my work with couples has shown this to be the case.

Read more advice about relationships in the articles at www.autism.org.uk/relationships and on our online community at www.autism.org.uk/community

28 Your Autism

Readers to the rescue!

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

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

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I’m a university student, and living in halls of residence. There are fire alarms in each room, and whenever I’m in my room I fear my alarm will go off. I’m not scared of the loud noise, but of the sudden unexpected jump when it comes, and it creates this uncomfortable feeling. Does anyone have any tips? Anonymous, via our online community

For expert advice on any autism-related 2. Occasionally, alarms are oversensitive For several years I worked as issue, call our Autism and go off whenever someone burns assistant warden for a Helpline on 0808 toast, for example. If the alarm goes off university hall of residence. 800 4104 frequently, ask for it to be adjusted, or ask I was the person responsible for fire drills, if you can be transferred to accommodation and for attending if the fire alarm ever went that has not had false alarms. off unplanned. I suggest you could talk to the warden (or 3. If it is really getting you down, consider whether you whoever is responsible for your hall of residence). would prefer to move out of the hall. However, you might Universities have a responsibility to make reasonable adjustments for people with disabilities, including autism. also feel more isolated and miss social activities so it is worth considering carefully. I recommend you tell them that you feel uncomfortable about the fire alarm in your room, and ask them what Hopefully, over time, you will become used to the alarm, they can do to help you. and feel less uncomfortable in your room. Examples include: Best wishes – I hope these ideas help. 1. They might be able to warn you in advance before any fire drills. We used to test the fire alarms once every term, Debbie Lovell usually around 5am when students were likely to be in their room. If you know in advance, you can be prepared. Debbie wins a copy of Our autistic lives: personal The rest of the time you would not need to worry about accounts from autistic adults around the world fire drills. aged 20 to 70+, edited by Alex Ratcliffe.

Help me next!

Can anyone recommend talking devices for non-verbal autistic adults? Anonymous, via our readers’ survey

Send us your recommendations for a chance to win a copy of All cats are on the autism spectrum by Kathy Hoopman.

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.

Spring 2021 29

Advice

How to… respond to school phobia Is your child worried about going back to school after lockdown? Clare Macer and Sharon McDaid of our Education Rights Service offer some strategies to tackle school attendance issues School can be a difficult environment for autistic young people. The noise, smells, lighting, overwhelming stream of information, social expectations and constant transitions can all cause anxiety. If a child isn’t getting the right support, the school environment can be impossible to cope with. Sometimes, the anxiety school causes can be overwhelming and an autistic pupil is unable to attend. If your child is no longer able to go to school because of anxiety, what can you as a parent do to help? The first step is to try to understand what is causing the anxiety. Some children will be able to explain the source of their anxiety, others may struggle to express themselves. Using visual prompts may help identify the issue. For example, a child could rate a task or area from ‘not scary’ to ‘very scary’; they could colour subjects on their timetable red if they struggle with it, amber if it is OK or green if they don’t find it challenging. A stress scale or thermometer could also help a child identify situations that are raising their anxiety levels. A worry book or box could be created to write down any anxieties the child is having; personalising it with the child’s favourite interest may encourage them to use it. 30 Your Autism

Identify strategies to use at home to help your child relax and reduce anxiety. This could be a walk outside, building Lego or having some quiet time in their room. Scheduling time to unwind may be useful for children who need prompting. Communicate with the school. Contact the person responsible for special educational or additional support needs. Find out what has been done to identify the child’s sensory issues, or any other difficulties they are having either socially or with the curriculum. If nothing has been done, parents may like to request their child’s needs are assessed and identified. Consult with any staff members who have a good relationship with the child on what strategies they use to support them. Share information with the school so they can make changes to support your child. Let them know which subjects they said were ‘very scary’ or marked red, so the school is aware of any problem areas. Ask the child about the support they need. If appropriate, and where a child is struggling to express their views, an advocacy service may be used to make sure their voice is heard. Every child is different and the support they need will be, too. Options many autistic pupils find helpful are: having a quiet

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Advice

space; a time-out card; ear defenders; a later start or early finish time; more time for transitions between lessons; an individual workspace; an allocated trusted member of staff to speak to; or professionals to suggest strategies for the school to use. Having extra breaks, rewards for meeting targets and an opportunity to debrief at the end of the day may also help. For older pupils, anxiety support apps, such as ‘Brain in Hand’, may be useful. Some parents decide that school is not a suitable environment for their child and choose to home educate. Home education is a valid choice and means of education, but parents shouldn’t feel forced into home educating. Some parents remove their child from school temporarily as a last resort, in which case the school should be doing everything it can to support your child so they can return. If the school raises concerns over the child’s absence, seek advice from our Education Rights Helpline.

When a child is ready to go back to school, there will be a process of reintegration. This may initially be part-time attendance, but there should be a plan to work towards increasing attendance and support should be in place to make successful reintegration possible. Progress on reintegration should be monitored, with the child being encouraged to express their concerns. Initially, the plan for reintegration may need to be detailed with an explanation of exactly where they should be going at which time and who will be there to help them. Communication between parents and the school will be vital during this time.

If you would like more information on ensuring your child has the right support in school, please contact our Education Rights Helpline on 0808 800 4102 or visit www.autism.org.uk/educationrights Find out about Brain in Hand at www.autism.org.uk/brain-in-hand Spring 2021 31

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Advice

Planning for the future: finding supported living with care Our Helpline Adviser Sam explains how to begin looking for supported housing and personal care for autistic adults An important question for autistic people and their families is how they might establish more independence as they get older. One aspect of this is where a person is going to live. Residential care is an option for some. But there are alternatives that, unlike residential settings, provide personal care and support separately from the accommodation. 32 Your Autism

Many autistic people, their families and professionals believe this type of set-up can help encourage greater independence. This is because it allows the support to be tailored, over time, to meet a person’s changing needs and developing skills (rather than being included with the residential care’s support package). More choice might be possible about where – and in what type of home – a person will live. This article will consider some alternatives to residential care, what funding might be available and the steps to start this process off.

Supported living

If you’re an autistic adult in supported living, you’ll receive personal care, separate to the accommodation arrangement. The accommodation might be provided by a specialist supported housing provider (sometimes the council, a local housing association or a charity) or by a private landlord. The house/flat may even be owned by the person themselves or their family. Sometimes, this housing will be shared. There are a lot of possible arrangements, so it is important that an individual or a family takes time to consider if it is right for them. Personal care can vary greatly depending on the individual; however, some common examples include: help with medication, bathing, dressing, and domestic tasks, such as cleaning and preparing meals; supporting an individual to plan their week; getting to work; setting up medical appointments; or attending activities or hobbies that they enjoy. A support worker could provide some or all personal care depending on the person’s needs. They may be employed by the provider of the supported living scheme, a charity, a local authority or the NHS if offering medical care. Support may be a few hours a day, a few hours a week, or it may be available 24/7 as part of supported living, and this will depend on the set-up and the individual’s needs. An autistic individual or their family may wish to employ someone themselves, to give specifically tailored help; these employees are called personal assistants (PAs). In some circumstances, personal assistants and support workers can live in the home as a way of providing more readily available support throughout the day and night. They are then regarded as ‘live in carers’.

Extra-care housing/ sheltered accommodation

Extra-care housing is different from supported living in that the accommodation is purpose-built for specific health and

support needs (the accommodation may be specially adapted and designed). It will usually be on a campus with other purposebuilt accommodation and there will be trained care providers available 24/7. Sheltered housing is similar to this, but usually there is not the same presence of care workers and the accommodation is not as specialised. It is true that this set-up is most commonly provided for people over 50. However, some younger autistic people with particular sensory, physical or mental health needs may feel safer in these environments. Some supported living schemes offer specially adapted accommodation or, through disabled facilities grants, adaptations can sometimes be made to a person’s own home or flat. So, extracare housing is certainly not always needed to find the accommodation that’s right for you or your family member. In terms of personal care that isn’t provided by the on-campus care and support, this can be provided by a specially sourced support worker or a PA (as in supported living).

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Advice

Funding

As a rule, accommodation costs are separate, so the accommodation will be paid for by the autistic person or their family. If a person is not in a position, financially, to do this, they may be able to get help through the Department for Work and Pensions to pay for the total costs, or at least some of them – through housing benefit, disability benefits (such as PIP and ESA), or Universal Credit. The person’s own savings may affect the amount of benefits they can receive, but the family’s finances should not be taken into consideration. The government website is a good place to start for more detailed information on benefits: www.gov.uk/browse/benefits Some families will consider buying a property or entering into a sharedownership arrangement of a house/flat; this can be an investment and can lower the cost of living in the property. There may be specific schemes in the local area for this. The personal care costs could be covered by health and social care funding through the local council. A person would need social services to assess their needs to see what they might be entitled to.