YOUR Spring 2020
Harley’s journey
Taking on the 7k challenge
Beano
Meet the superfans
Social network
Helping to make friends
Plus
Diagnosing women and girls, and planning for the future
YOUR Spring 2020
Caroline Stevens
22
Jay’s working life
32
EDITOR Suzanne Westbury YourAutismMag@nas.org.uk Contributors Hermione Cameron, Florence Leslie, Tracey Lattimore, Georgina Maric HEAD OFFICE National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk SUPPORTER CARE TEAM 0808 800 1050 membership@nas.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@jamespembroke media.co.uk SUBSCRIPTIONS Only available to members of the National Autistic Society. To join, visit www.autism.org.uk DESIGN AND PRODUCTION CPL (Cambridge Publishers Ltd) 01223 378000 www.cpl.co.uk 1 Cambridge Technopark, Newmarket Road, Cambridge CB5 8PB PRINT Warners Midlands 01778 391000 National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG © Your Autism magazine Spring Vol 54, 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.
Harley’s journey
Contents
14
What’s new?
04
It’s different for girls
28
News special
10
Readers to the rescue
31
My diagnosis
13
“I’m proud of my job”
32
Harley’s story
14
Where there’s a will
36
Comic relief
18
Meet the team
41
Interview
22
Notebook
43
Starting to socialise
24
I’m a... radio DJ
46
A round-up of the latest news
The NHS’s STOMP programme
Marion’s experience
Raising money for charity
The benefits of the Beano
Chief Executive Caroline Stevens
Want to make friends?
Diagnoses for women and girls
Dealing with school behaviour
Jay is thriving in his work
Putting financial plans in place
Fundraising Officer Caz Rees
Things to read, do and see
male to female ratio for people with an autism diagnosis ranges from 2:1 to 16:1 The
28
Spring 2020 3
What’s new?
Get in touch!
Our roundup of the latest news and views
Daisy & Ollie school resources
All rights reserved ©2020 Hoopla Animation Limited
All schools signing up to take part in World Autism Awareness Week will get access to our suite of free learning resources about autism. These include our new Daisy & Ollie resources for early years. Our resources promote the idea that we’re all different, and we’re all the same – and they are tailored to early years, primary and secondary schools. More than 4,000 schools took part in awareness and fundraising activities during World Autism Awareness Week last year. It’s incredibly important that students are learning about autism, to better understand their classmates. If you have a child at school or know a child on the spectrum, ask their school to sign up at www.autism.org.uk/saaw
Autism strategy update Ten years on from the introduction of the Autism Act, the Government has been reviewing and updating the national autism strategy for England. The reviewed strategy, which was meant to be published by the end of 2019 – but was delayed because of the General Election – will include children and young people for the first time, as well as adults. This follows a campaign by our charity for a national strategy on autism and education. We told the Government that a national strategy is needed for autistic children because research shows many children struggle to get a school place that meets their needs. A parliamentary inquiry
4 Your Autism
in 2017 by the All-Party Parliamentary Group on Autism (APPGA) found autistic children were being refused assessments of their needs, and reasonable adjustments were not being made for them. They also found that education, health and social care services were not working well enough together. The APPGA concluded that, for many autistic children, their experience at school becomes ‘a pathway of failure’. The Government has collected evidence from autistic young people, their families and professionals on how to improve support, and we’ve been calling on them to publish the strategy as soon as possible.
News
Doors open at our new school The Spectrum animal archive
If you love animals, be sure to visit our archive of animal-themed articles from The Spectrum magazine. See our compilation of features, poems and artwork at www.autism.org.uk/thespectrum
NHS waiting times revealed
The NHS has published national data on autism diagnosis waiting times in England for the first time. People at 10 out of 25 English health trusts waited an average of 137 days (19 weeks) for their first autism diagnosis appointments following referral, against a target of 91 days, in spring 2018. Our charity has campaigned for the collection of this data for many years, but found it limited as some trusts did not submit it. We are pushing NHS Digital to improve this information so we can get a true national picture of waiting times. The full statistics can be found at digital.nhs.uk/data-and-information/ publications/statistical/autism-statistics/ autism-statistics
iStock .com / sturti
We are incredibly proud to have opened our new Vanguard School in Lambeth, South London. Our school will provide specialist education for autistic children aged 11-19 from Lambeth and neighbouring boroughs, who are looking to go on to further education, training or employment – but who haven’t been able to get the support they need in mainstream school. With capacity for 78 students, the school will grow gradually, starting with students attending in years 7 and 8. As well as high-quality learning facilities, the two-storey building has 14 classrooms, a sensory room, library and two therapy rooms. A huge thank you to the many people who worked so hard to make this possible, especially local parents. Find out about places at www.autism.org.uk/vanguard
Spring 2020 5
News
First autism centre for Belfast Our ambassador, Christine McGuinness, opened our Northern Ireland Autism Centre in November 2019. The first of its kind in Northern Ireland, the centre has been purpose built for autistic people and their families.
It offers day provision for autistic adults who need high levels of support. Thanks to everyone who helped us raise an incredible £200,000 for specialist equipment. See more at www. autism.org.uk/BelfastCentre
Pompeii or Bust! Congratulations to Susan, Valerie, Jeanette and Mandy, otherwise known as the Cornish Maids, for completing the Pompeii or Bust fundraising challenge. They travelled in road-trip style from Cornwall to France, Switzerland, Italy and into Pompeii, raising £2,710 for our charity. Susan chose to raise money for autistic people and their families because her young nephew was recently diagnosed. She said:
6 Your Autism
‘’We acquired an old, roadworthy car from a local garage, held a bingo evening and a car boot sale, and asked anyone we could for a donation. In France, we were given challenges to do en route to keep us going for the five days.’’ Feeling inspired to fundraise? Get in touch with us and we’d be happy to help you decide what adventure, big or small, you could try in 2020. Find out more at www.autism.org.uk/fundraise
Autism training and development With more than 50 years of learning from first-hand experience, no one has more practical knowledge of autism. Whether you’re new to working with autistic people or are an experienced professional, we have training to meet your needs. Online training Developed by autistic people, our online modules will enhance your autism knowledge and fit into your busy schedule. • • • • • •
Women and girls Safeguarding children on the autism spectrum Understanding autism Autism: supporting families Autism and communication and others.
Find out more
Open access courses Our training courses for autism professionals offer practical strategies to use in your work. • Essential training • Enhanced training • Specialist training
Bespoke and in-house For organisations hoping to train an entire team, we can provide training at your workplace.
www.autism.org.uk/training
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
Diary dates
What to do and where to go
4 June 2020
Autism at Work Summit, London
30 March-5 April World Autism Awareness Week
Whether you’re an autistic employee, or you’re hiring autistic people, this is the event for you. Join us at this one-day conference and discover new ways to support autistic employees. learn.autism. org.uk/autismworksummit
8 August 2020 Scafell Pike
Calling all intrepid hikers! Join Team Autism for an August adventure in the Lake District and take on England’s highest peak. Enjoy breathtaking views while raising vital funds. www.autism. org.uk/scafell
12 August, London
Harry Potter and the Cursed Child
Ready for our biggest campaign of the year? From our famous Spectrum Night Walks to new fundraising kits for schools, there are plenty of ways to get involved. www.autism.org. uk/waaw
Enjoy a magical evening of theatre this summer as the cast of the Cursed Child returns for an autism-friendly performance. Adjustments include quiet spaces and trained staff available on the day. www.autism.org.uk/shows
17 May 2020
Yorkshire Three Peaks
31 May 2020, 1.30pm The Lion King
Be transported to the savannahs of Africa in this autism-friendly performance of Disney’s classic tale at the Lyceum Theatre, London. Trained staff will be available to support autistic audience members. Book at www.autism. org.uk/shows
June 2020
The Autism Show
Our charity is once again delighted to partner with The Autism Show. If you’re looking for information and direction pre- or post-diagnosis, are facing daily challenges, or you’re approaching significant transition points, then The Autism Show can help you. At the show, you can pick and choose from more than 100 hours of talks, clinics and workshops, plus hundreds of specialist products and services.
Members of our charity will receive a 20% discount on ticket prices by quoting NASM20 www.autismshow.co.uk
iStock .com / omada
Are you up for an uphill challenge? Trek with Team Autism across the stunning Yorkshire Three Peaks and help raise money for autistic people and their families. www.autism. org.uk/y3p
13 September 2020 Great North Run
Put your best foot forward for autism this autumn in the world’s most famous half-marathon. Charity places are available, so don’t miss out on your chance to run with Team Autism. www.autism.org.uk/gnr Spring 2020 9
News special
“As a mum, I despaired at how difficult it was to challenge clinicians” We caught up with Hazel Griffiths, retired nurse, carer for her autistic son Matt and an adviser on NHS England’s STOMP programme – Stop the over-medication of people with a learning disability or autism What got you involved with STOMP? It was my son’s experience. Living away from home, Matt struggled with the transition to adulthood and had an acute reaction to stress. He was assessed by the local health team and, without a definitive diagnosis, he was given psychotropic medications (drugs that affect the mind, emotions and behaviour). We became increasingly concerned about side effects: rapid weight gain, high blood-glucose levels, becoming catatonic (unresponsive) and movement difficulties. I felt the team was not listening to our family’s concerns. As a nurse, I was shocked at the way my son was treated. As a mum, I despaired at how difficult it was to challenge clinicians. Once his GP stopped all the medications, Matt’s blood results and weight returned to normal. What helped you? Our family began to better understand Matt’s sensory differences and need for structure and routine, which reduced the need for medication. By understanding his autism, we were able to alter our behaviour and reactions. Needs become complex because we often fail to meet them when they are simple. His GP 10 Your Autism
devised a healthcare plan, so any future professional knows exactly how to support Matt and what not to do.
How did STOMP come about? In 2012, after a BBC Panorama investigation, the Department of Health and Social Care launched an inquiry into the care of autistic people. They found deep concerns around overprescribing, and an NHS chief pharmacy study found that 35,000 people on the autism spectrum or with learning disabilities were taking psychotropic medicines in the absence of the condition for which they were indicated. NHS England launched the STOMP programme in 2016.
News special
What’s STOMP’s main aim? To support the safe and appropriate use of antipsychotic medicines, and to reduce overprescribing. STOMP is not anti-medication. What we do ask is for prescribers to use medications for the right reasons, and to monitor, review, and remove if side effects outweigh the benefits or the medication is not making a difference. It’s vitally important to ask and listen to the autistic person and their preferences. It’s imperative you have a good understanding on how autism impacts on their lives and what you can do to help. What would you advise parents and carers to do if they are worried about overprescribing? We know psychotropic medicines can affect quality of life and health. They can be a type of chemical restraint that stops people from having full lives. This can make things worse instead of better; a quick fix instead of a solution… a quick fix that becomes a way of life. Anyone can ask for a medication review if they are concerned about the medications prescribed. Don’t be afraid to speak up. Develop a compassionate curiosity, a critical eye – it’s a matter of patient safety, quality and human rights. What’s your role? I co-produce and deliver face-to-face training on autism, reasonable adjustments and STOMP across all job grades, and campaign to have STOMP in all autism training. I am involved in providing vital resources and tools for professionals, to follow on from face-to-face training.
Download STOMP resources at www.england.nhs.uk/ Stomp
FIND OUT MORE
To support other families, Hazel has put together a set of eight questions for families to ask their prescribers: ● What is the medication prescribed for? ●H ow do you know it is working? ●H ow long will it be needed for? ●H ow do you evaluate
the impact or effect of the medication? ● What happens if it does not work or seems to stop working? ● Can it be removed, and how? ● How will side effects be monitored and how often? ● What other treatments, support or interventions can be used?
I believe that half-a-day autism training is not enough for professionals, and they need extra resources. I advocate for autistic people to be involved in training professionals, too. I’ve also advised on the independent review of the Mental Health Act in England and Wales, and the Care Quality Commission’s (CQC’s) thematic review on restraint.
What has STOMP achieved so far? We have 235 social care providers, 107 healthcare providers and nine royal colleges signed up to the STOMP pledge. Each organisation has agreed to create an action plan, which describes what they will do to reduce overprescribing psychotropic medication. Now we are working on establishing a STOMP programme in each region, and are developing STOMP materials specifically for autistic people. In 2018, we launched STAMP for autistic children and young people, with or without a learning disability. It stands for ‘Supporting Treatment And Appropriate Medication in Paediatrics’. What’s your proudest achievement? STOMP is giving me the opportunity to drive change. For instance, I’ve advocated for STOMP to be in the new Mental Health Act Code of Practice and the CQC inspection framework. Spring 2020 11
My diagnosis
“I wanted to know once and for all” Marion Armstrong writes about being diagnosed as autistic at the age of 72 I was diagnosed as autistic in 2017. I always knew there was something different about me, but didn’t know what it was – or how to find out. It was eight years earlier that my daughter first suggested that she and I might both be autistic. The more we researched, the more we learned and the more sense my life began to make. I decided I would like a diagnosis to know once and for all. I didn’t know if I would be taken seriously at my age, but I took advice from the Kent Autistic Trust and was assured that everyone is entitled to request an assessment. After a few delays along the way, my daughter and I both got our diagnoses in the same year.
Read more
The process of getting an autism diagnosis is explained at www.autism. org.uk/adultdiagnosis Want to share your diagnosis story here? Email YourAutismMag@nas.org.uk
I find people are often surprised to hear I’m on the spectrum. It is true that, even with the increased awareness of the condition, women – especially older women – are often overlooked. It is because of this I now spend much of my time giving talks and organising events about women and autism.
Life struggles Before my diagnosis and unknowingly to me, autism was affecting every aspect of my life. As a child at school, I struggled. I sometimes excelled, but more often, I wouldn’t finish my work. My marriage failed and I have lived alone for most of my adult life. I had a job, but was often anxious in work situations and frequently suffered breakdowns. Living with an undiagnosed disability that severely affects not only your quality of life, but also your ability to deal with all of its stresses and strains, can lead to an abiding sense of failure and extremely low self-worth – but without any understanding of why, or any means of support. This was my experience for much of my life, but I’m so much happier now that I finally know who I am – and I hope, with greater understanding, the future will be better for all of us. Spring 2020 13
Real life
Harley’s story Harley, five, is non-verbal and currently at primary school. Here, his mum Shannon Sheldrick tells their story
14 Your Autism
Real life
A few weeks after Harley was diagnosed as autistic, I found myself searching the internet for a manual on Harley’s behaviour. It turns out they don’t exist! This was the moment I realised that we have our very own personal tour guide and, since then, Harley has taught me more about this world then a manual ever could. Harley was born in 2015 – two weeks late – weighing 9lb 6oz, and was very poorly. After the team managed to get him breathing, he spent a day on the neonatal ward because of an infection. Harley and I were then reunited on the maternity ward, where we took up residency for a week. This was enough time to ensure the antibiotics Harley was having twice a day had fought the infection. As Harley was my first baby, I only had my sister’s experiences with her two little boys to go by. Harley hit and occasionally excelled at all the key milestones – he rolled over for the first time at seven weeks, he walked at 10 months, all his teeth came through when expected and he even slept through the night for many, many months. It never occurred to me that the little cracks in his development were any different from any other child at his age. As far as I was concerned, he was just like my nephews, Leo and Lucas – cheeky! As these little cracks became bigger, I soon started to realise that things were going in a different direction to the one I was expecting. There were so many little triggers and things happening so quickly, one after the other, that I knew something was going on, but I just didn’t know what – or what to do about it.
How Harley plays
Harley loves stacking cups, but they have to be in a line touching each other, and in size order. He loves to run, but has no danger awareness and, therefore, no understanding of consequence. Harley loves to swim, but doesn’t understand why lifeguards panic when he stays under for too long. He loves colours and shapes, but they have to be with their own kind, either all the same colour or all the same shape.
Harley loves stacking cups, but they have to be in a line touching each other and in size order
Harley loves insert puzzles, but each insert has to be removed and put back in a certain order – an order that seems completely random to us, but must make absolute sense to him. Harley loves playing with toy cars, but not in the conventional way – they must be turned over for him to be able to spin the wheels over and over again. Harley, most of all, loves making noise. But he can’t talk and, therefore, gets easily frustrated when trying to communicate. This brings me on to his speech. I think Harley must be the loudest non-verbal child you will ever meet. He laughs, he shouts, he babbles, he screams and he imitates noises that we make – just 10 times louder. We haven’t yet managed to locate his ‘indoor voice’ button, so any tips would be gratefully Spring 2020 15
Real life
received! This doesn’t mean he can’t communicate with us. Harley is in reception class and, since being at primary school, they have introduced the picture exchange communication system (PECs), which allows people to communicate using pictures. Using PECs, Harley is taught to approach another person and give them a picture of a desired item in exchange for that item. He has this down to a T, and has now started introducing the use of small sentences such as “I want” or “I need”. I would really recommend looking into PECs if you are trying to find ways to help your child communicate – it has reduced Harley’s frustration immensely, and given him something to focus on where he can see immediate results. It’s ideal if your child has such a short attention span as Harley. Looking back, there was one experience that hit me quite hard and it still upsets me when I think about it. When Harley was three, he attended nursery four days a week, which he absolutely adored. During one pick up, I made my way to his classroom and, through the door, saw all the children sitting on chairs in a row pretending they were on a bus going to the zoo. Harley was missing – he was entertaining himself in the corner putting coloured bricks into lines. This hit me hard. It was the very moment I came to realise that Harley was missing out on all the things the other children were doing and experiencing. Looking back now, Harley was happy doing his own thing, oblivious to what the other children were up to – he was learning and discovering colours and shapes, while they were spotting animals. He was happy, and that’s all I ever want for him.
7k for World Autism Awareness Week
Last year, when I saw that the National Autistic Society was advertising a fundraiser, ‘7k for 700k’, it made me think about all those who were raising money for people just like Harley. I soon realised that there may come a point when Harley needs support, and that was it. The banner was made, the JustGiving page was up and running, promotion started, 16 Your Autism
Harley communicates well using the PECs system
friends and families got involved, the walking route was mapped out, and we were ready to go. And what a blast it was! Harley managed to walk 7k without stopping, and even had to encourage his granddad at some points because he was going too slowly! £1,150 later, Harley received his medal and certificate in the post and, every time I look at it, it reminds me how proud I am, and how the money that Harley raised would have gone to support so many others just like him. So, 7k for 700k 2020 – we are coming for you! But with a twist, because Harley has become an amazing swimmer over the past year, all thanks to his incredible swimming teacher, Alex. We have decided to split the 7k so Harley will do 5k walking and 2k swimming unaided. If you’d like to follow Harley’s journey, you can find us on Instagram at @asd.harley. Here’s to our superheroes!
Get involved Find out how to get involved in World Autism Awareness Week at www.autism.org.uk/waaw
In-depth
Comic relief As Beano celebrates its 82nd anniversary, Florence Leslie looks at why Britain’s longest-running comic is still reassuring and entertaining autistic fans of all ages When autistic comic collector Piers Casimir-Mrowczynski began reading the Beano at eight years old, his local newsagent would deliver his subscription. Fifty years on, and 15-yearold autistic Beano fan Harry Warburton enjoys getting his hands on the world’s longestrunning weekly comic before spotting it on shop shelves. “Some of the characters change, as do the artists, but there is still a sense of recognition, however young or old the reader,” says Piers, when asked for his favourite thing about the Beano. Harry’s dad – teaching assistant Guy Warburton, who used to volunteer with our charity’s Parent to Parent helpline – says his son, a five-year subscriber to the Beano, likes to collect. “He has piles and piles of the magazine. 18 Your Autism
Piers with some of his collection
I think he’s comforted by reading them every night.” Freelance writer and trainee counsellor Lottie Storey, who worked as the parents’ editor of the online Beano blog, says her nine-year-old autistic son, Ted,
also keeps a huge stack of back issues by his bed. He loves the ‘anti-establishment vibe’ of the comics, she says, and – as lots of autistic people experience intense anxiety in unpredictable situations – finds the predictability of the comics reassuring. “The same characters feature each week with different storylines, but the fact that it all resets feels very safe,” says Lottie, adding that there isn’t a room in their house without something in it related to the Beano. When asked about their favourite characters from the comic, many autistic people and their families pick the Numskulls. They first appeared in the Beano in 1993, and are tiny, humanlike technicians who live inside people’s heads, controlling their senses. “It makes sense to Ted that there would be distinct entities in control of different aspects of his body and mind,” says Lottie. (continued on page 20)
In-depth
Beano Studios and the National Autistic Society
Many autistic children and adults get amazing benefits from reading the Beano and watching Dennis & Gnasher; Unleashed! animations. They respond to the strong colours, learn to read emotions from the exaggerated expressions, and use the jokes to help them interact with their peers. Prompted by some particularly heartwarming stories from autistic fans, Beano Studios got in touch with our charity to see if there is more it could do to help the autistic community. We are very excited that Beano Studios, with our charity’s input, is to explore storylines and characters that include autistic children.
Ted’s favourite Beano characters are the Numskulls Spring 2020 19
In-depth
Piers, meanwhile, chooses the Bash Street Kids’ Plug from among his hundreds of Beano comics and annuals, because “he looks different and acts in a different way, but is accepted for who he is.” This feeling of being included is highlighted by Jessie Hewitson, Deputy Money Editor of The Times and Sunday Times, and author of How to raise a happy autistic child. “Being autistic means being misunderstood a lot of the time,” she says. “The social side of things is hard – so that can be an appeal of the Beano, where everyone has a gang.” Jessie’s “funny, chatty, sensitive and logical” son Ellis can, like many autistic people, find the world overwhelming, and sometimes experience sensory overload. “Ellis’s sensory experience is different from most other kids – so they see him putting his hands over his ears and don’t understand why, because the noise isn’t so bad for them.” When the school playground was daunting for him, Ellis would retreat and read a Beano instead of trying to join in with games he didn’t understand, or risk rejection. Sometimes, other children would pick up a comic and join him, says Jessie. By reading the comics – and watching Dennis and Gnasher in animation – autistic people and their families say the Beano has helped them to better understand emotions. This can help make social situations feel less overwhelming or isolating for autistic people who find it challenging to process facial expressions. Vocalist Lisa Curran’s nineyear-old autistic son Christopher 20 Your Autism
Christopher loves the Beano
enjoys the Beano because he can clearly see the exaggerated reactions. “The colours and clear language have been a huge help in how he reacts to his peers,” says Lisa, “and he has used the jokes as ice-breakers in anxious situations. Reading the Beano has been life-changing.” The light-hearted illustrations of ‘right and wrong’ in the comic strips are also much more entertaining than pointing to ‘boring’ picture books, she adds. Whether stacked on bedside tables, cherished in dustproof binders, or shoved into school backpacks and unfurled in the playground, the ‘blamtastic’ Beano (as Dennis would say) continues to be an entertaining, reassuring read for autistic people and their families – even after 82 years!
Exclusive Beano special offer for our members SUBSCRIBE AND NEVER BE WITHOUT A BEANO! Get six issues free
● Subscribe to the Beano and get your first six issues free, saving £16.50 on the shop price. ● Save 46% on the shop price with an ongoing subscription – only £18.75 every three months. ● Never miss an issue – enjoy free weekly delivery to your door before it’s on sale in the shops. ● Free gift card – receive a voucher gift card to give to your Beano fan. Visit https://shop.beano.com/bn6fr or call 0800 318 846
Use discount code: BN6FR Introductory offer terms and conditions: Pay nothing for the first six issues when subscribing by direct debit, followed by £18.75 every three months/12 issues, saving 46% on the shop price (overseas rates available). UK bank accounts only. If you do not wish to continue, the subscription must be cancelled within two weeks of receiving your first two issues to avoid making a payment. More credit/debit card offers available online. All postage and delivery costs are included. Ends 31/03/2021.
Interview
“I’m proud to be working for the changes we must see in society” Caroline Stevens, our new Chief Executive, answers your questions You described being chief executive of the National Autistic Society as your ‘dream job’. Why is this role so important for you? Lindsey
My middle son, Jack, is 25 years old. He is autistic, has learning disabilities, a sensory processing disorder and a sleep disorder. He is non-verbal and requires a high level of support, 24 hours a day. He’s now in a really well-supported situation but, over the years, we’ve faced enormous challenges and heartache to get him the right education and support. As I’m sure many of you can understand, it can be exhausting having to fight for things that other people take for granted. In the early days, I turned to the helpline for advice. After experiencing the charity’s positive impact, I joined my 22 Your Autism
local branch, where I could speak openly. After working in the disability sector for the past six years, sadly I know my family’s experience is not unique. Autistic people and their families deserve so much better, and I’m immensely proud to be part of an organisation working for the changes we must see in society.
Autistic people who have distressed behaviour because of their sensory processing difficulties are removed from their loved ones into institutions many miles away. My brother never returned home because of lack of facilities, and this problem still exists. Why does central funding from the Government not address these issues? Denise1
Your brother’s experience of a long stay in hospital far from home is, sadly, not unusual. We need to end the scandal of autistic people being stuck in hospitals, and there must be a full range of support in communities across the country. We will continue to campaign alongside autistic people and families until all UK governments make this a reality. We are also launching a new Autism Inpatient Mental Health Advice and Casework service this year to provide information to families whose loved one is – or is at risk of – being detained in a mental health hospital. Last year – 10 years on from the Autism Act in England – we carried out an inquiry with the All-Party Parliamentary Group on Autism into the state of support for autistic people. We heard from more than
Interview
range of autism and the associated complex needs? Angie
Our charity is here for autistic people across the whole of the spectrum. We work hard to make sure that this is reflected in our communications, for instance, having a range of features in Your Autism, or in Stories from the Spectrum. We were really pleased that, in our recent survey about public attitudes, almost 40% of replies came from people – or families of those – with high support needs. We’ve changed the messages in our public awareness campaigning as a consequence. But I know we can always do more to highlight experiences from all points of the spectrum, and I will make sure we do.
11,000 people, and our Not Enough campaign recommendations are feeding into the new English Autism Strategy. In particular, we urgently need specialist autism support in every council and the funding to fix the social care crisis – and provide the specialist community mental health support that might have helped prevent your brother ending up in hospital.
The National Autistic Society has made great strides in increasing the public’s awareness of autism and challenging stereotypes. However, I have been disappointed in the past at the lack of inclusion of more complex presentations, like my son. Can you assure me that the charity will reflect the wide
My 28-year-old son is hard working, and a supportive working environment would be a huge asset for him. Experience tells us that if we mention on his CV that he has
autism, he doesn’t get invited for interview. Are we right not to mention his autism, and is there any guidance for how to make this next vital step? Carol
We know from our research that, shockingly, only 16% of autistic adults are in full-time employment. More employers are, at last, recognising autistic people as valuable employees – and that they should make recruitment and workplaces more autism friendly. We’re thrilled that, in June, we’re hosting a work summit (learn. autism.org.uk/autismworksummit) to bring businesses together to champion autism at work. Until we can change all employers’ attitudes, we realise that each autistic applicant will have to make their own decision about whether or not to disclose their autism. We’ve got information on how to go about this at www.autism.org. uk/employment 1
Some questions have been combined
Caroline Stevens Family: Three sons, including Jack, who is autistic. Career: Up until November 2019, Caroline was Chief Executive of KIDS charity and, prior to that, Chief Operating Officer of the British Lung Foundation. Before this, Caroline had run hospitals and hospital departments after starting her career as a pharmacist and store manager at Boots UK. Public life: Trustee at Dementia Carers Count and Homefield College in Loughborough, a specialist college for autistic young people and those with learning disabilities; previously Vice-Chair of the Partnership Board, Council for Disabled Children. Interests: Walking Nell, her border collie, and spending time with family and friends.
Spring 2020 23
Socialising
Starting to socialise
Want to make friends, or help the person you care for to do so, but don’t know where to start? Try a social group for autistic people, run by autistic people
In our 2018 research on life challenges, three-quarters of autistic adults told us they do not have any friends or find it hard or very hard to make friends. We found that autistic people are four times more likely to be lonely than non-autistic people. Many autistic people want friends, but can find forming and maintaining friendships difficult. George Mac and Robert Graham decided to take matters into their own hands in 2017 and set up the South Glos Aspies to tackle social isolation. “I have lived abroad, being the only Brit in the village – it’s like that kind of isolation when you enter adulthood as an autistic person,” explains George. “Our biggest deficit and consequence of this disability is ‘poor social capital’. It’s very complex as to why many of us lack friends, but our difference (often it’s subtle – mannerisms, body language or communication style) makes us hit post-school with no support – or very little. I have met many adult autistics (mostly guys) that live like hermits, not talking to one person for a week outside a few words at a shop. Not through choice, but through social rejection.” There was a huge need for a social group for autistic people in their semi-rural area. George explains: “There was absolutely nothing out there for us. There is serious unemployment or underemployment, thus poverty and poor social opportunities. As folk get older, the support peels away. So many of our members had no friends or support network.”
An autism-friendly night out
The Greenwich group enjoying a drink
24 Your Autism
South Glos Aspies runs a weekly pub social in Thornbury, 50 minutes from Bristol. “The pub kindly lets us use one of the function rooms, which is away from the noise and bustle of the main bar,” explains George. “We usually enjoy chit chat, and sometimes play board games. It’s informal – we can tell inappropriate jokes and no-one cares! “We are an open group. Anyone can come along, including neurotypicals – and several do. The main thing is it’s a place to be yourself and just enjoy company without judgement.
Socialising
South Glos Aspies at a karting event
Anyone can come along, including neurotypicals. The main thing is it’s a place to be yourself and just enjoy company without judgement
Stimming or anything that might turn heads in a regular bar is no problem.” The group also meets for a monthly pub quiz and ad hoc excursions to the cinema, go-karting and tours around local points of interest. “Initially, we had a busy schedule, meeting in different places each week for various activities, but we ended up following a model of same place, same time for the main meet-up and then doing special events as a less confusing model.” Group member Chris Wood says: “I consider the South Glos Aspies life-changing. It’s enabled me to talk to people who are the same as me and have trouble communicating. I wish the group had formed when I was at college, as I really struggled then. But I am grateful to have a group where we meet every week and can play games or talk, and no-one judges you. When new members come along, I get a little more confident in talking to them, and introduce them to everyone.”
Having conversations
Daniel Smith runs a similar monthly pub meet-up for autistic adults in Greenwich,
London. “Everyone has conversations about games and current events – they give each other advice,” he says. Group regular Joelle Rogan adds: “It’s a great opportunity to make new friends and have a good night out.” Daniel’s meet-ups are held in the main bar, but they are still autism-friendly. “Most of the bar staff know about autism, and the other locals in the pub have started to understand autism a lot better, too. Group members know I’m autistic, which means I understand where they’re coming from.” Some autistic people can find it easier to socialise online than face to face. Recognising this, Daniel runs online socialising groups, too, and later in 2020 he’s going to start an autistic positive speech group where members are not allowed to say anything negative. “I’m going to try a Facebook group to see if people would take away a better feeling about being on the spectrum, and also share their own positive views on it.” Our Plymouth Adults Aspergers Branch has been providing support and friendship to people for 10 years. The group holds meetings
Encouraging people to try a group ●G ently encourage the person you care for to try a local group. Social skills are important in our society, so help them go out and socialise in their own way, being themselves. ● Potential new members will usually be able to contact group leaders and members via social media first. They can introduce themselves and find out who else attends the group. ● Show them photos or videos of the group before going along. Even
better, bring the person you care for to see the group before deciding for themselves if they want to come along regularly. ● Daniel advises: “When I have a parent or carer who comes with the adult client, I make it clear that there is no pressure to join, stay or come to every session. I also ask the parent or carer to stay nearby, so that the autistic person can find them if they suddenly feel uncomfortable for any reason.”
Spring 2020 25
Socialising
in central Plymouth where members can socialise in a safe environment, share experiences and coping strategies, and make friends. They have speakers on health and benefits, and run outings and cafe meet-ups. Like Daniel, committee member Ellie Scott, runner-up in our Volunteer of the Year award, puts the group’s success down to it being run by autistic adults, for autistic adults. “There is research showing that people on the spectrum communicate with each other much better than we do with neurotypical people,” she says. “This seems to be borne out by our experience running an Asperger’s peersupport group, which is partly why we think it is so valuable – it’s a relief to be able to be ourselves in a social setting without others thinking we’re weird! It’s such a joy for people who feel constantly misunderstood and isolated, as we mainly do.”
Tips on setting up a group
Lasting impact
The impact of social groups goes well beyond a good night out. George of South Glos Aspies explains: “Many members now have someone to message if they are having issues during the week, thanks to the group’s networking opportunities.” Ellie adds: “I hope more people set up groups – it’s been so fulfilling for me, and helped a lot of us cope with life, and feel valued and understood.”
Read more
To find social groups near you, search for your local National Autistic Society branch at www.autism. org.uk/branches You can contact the groups in this article at: ●w ww.southglosaspies. org.uk ●w ww.nasgreenwich. org.uk ●w ww.nasplymouthadult aspergersbranch. webeden.co.uk
26 Your Autism
Daniel Smith runs online socialising groups as well as pub meet-ups
●F ind a location, such as a pub with a quiet space or one where staff are ‘autism aware’. ●B uild a social media presence or organising space (Facebook or WhatsApp are fine). ●K eep it simple to start with, and then you may want to raise funds for board games and trips. You can find advice on fundraising locally at knowhow.ncvo.org.uk/ funding/fundraising/individual-giving/local-andcommunity-fundraising ● I nvolve your local National Autistic Society branch for some background support and advice. If there is a parent or other member who wouldn’t mind giving you a hand and enjoys a social occasion, ask them to come along. ●K eep it simple. Same place, every week, routine. But build in a few activities, perhaps once a month, for variety. Keep it cheap or free. ●U se local newspapers and radio to advertise the group. ● As the person in charge, have a code of conduct or some rules for the group. ● Always remain neutral so you can make a sound judgement if there are any issues within the group. ●E njoy it yourself, so that group members see you are having just as much of a good time as them. Read more tips for group leaders at www.autism.org.uk/ digitalyam
In-depth
It’s different for girls More males are diagnosed as autistic than females, but is that a true reflection of reality, asks Georgina Maric
Depending on which study you look at, the male to female ratio for people with a diagnosis of autism ranges from 2:1 all the way up to 16:1. But Dr Sarah Lister Brook, Clinical Director for our charity says: “I suspect the proportion of males to females who would meet criteria for a diagnosis of autism is far more equal. Most studies looking at the male to female ratios in autistic populations have used diagnostic tools and criteria that are based upon a profile of autism more typically seen in males. Most of the diagnostic tools in current use are not sufficiently sensitive to identify the profile of autism more typically seen in females.” What Dr Lister Brook does believe is that “we need to continue to develop our diagnostic tools so that we can enable clinicians to examine the more subtle profiles within the autism spectrum”. Carol Povey, Director of the Centre for Autism at
What autism can look like in females ● May appear as more passive than typically autistic males, and internalise their difficulties rather than externalise these as behaviour problems, such as quietly worrying ● May be socially anxious/ selectively mute, but work hard at complying with
28 Your Autism
our charity, agrees. “Girls present differently from boys, and there are fewer clinicians and diagnosticians who have the expertise and understanding to recognise autism when it’s presented in women and girls.”
In general, what we see with girls is that they are often better at masking or camouflaging more of the acute characteristics of autism
the rules in a school situation and then let out all their anxieties at home ● Patterns of behaviour that are indicators of autism may present as intolerance of uncertainty rather than overt rituals, or the rituals are internalised, such as over-thinking things
Anecdotal reports show that many autistic females, or those who demonstrate the less traditionally obvious traits of autism, are not recognised. This can result in misdiagnosis, late diagnosis, or women and girls not being diagnosed at all, according to the NAS. “It’s not a strict girls and boys split,” continues Povey. “Many people think there is a female presentation, but boys may show the female presentation and vice versa. It’s not strictly gender specific. “In general, what we see with girls is that they are often better at masking or camouflaging more of the acute characteristics of autism. They may be able to copy other girls quite well, but struggle to understand the complexities of social interaction. Their autism may present in more subtle ways, which is one of the reasons many girls and women are misdiagnosed. When
In-depth
“My autism makes me unique, and I love that” Zoe Higgs, 17, talks about being diagnosed
they get to our Lorna Wing Centre, often girls and women have a diagnosis of emerging borderline personality disorder, and/or a mixed depressive and anxiety disorder, and/or OCD (obsessive compulsive disorder). An expert clinician can identify the underlying problems that they are struggling with, which may be because of autism as opposed to these other areas,” says Povey.
What to look for
Girls may well present differently, but they will have the same basic traits of autism as boys, including struggling to understand the world around them, and difficulty with social communication and interaction. “The diagnostic criteria of autism includes sensory difference, so autistic people experience the world around them in a different way,” explains Povey. “This can sometimes be heightened and sometimes dampened. Some people have over- or undersensitivity to sound or light, with a different way of sensing the world around them, and this is the same for boys and girls, though everyone is individual,” she says. “There are things that can make it difficult to recognise girls on the spectrum. Often, autistic people are able to focus intensely and, in the case of older boys, they may be interested in things such as engines, planets or dinosaurs. But girls are often interested in things like pop music, fashion and people, and how they work – including psychology and literature. A clinician who does not understand the female presentation of autism will just think all girls are
From a young age, I had communication difficulties and I preferred to be at home. I struggled with big groups of people, especially if they were new to me or if the group was particularly loud. I also needed a rigid routine to stay calm, and anything unpredictable usually caused a meltdown. My parents only knew the boys’ perspective of autism but, when I was 15, they saw a video about autism in girls and boys, and recognised traits I have. They showed me it and I recognised the traits in myself. I was diagnosed at the Lorna Wing Centre when I was 16. From the information my parents gave them about me as a child – and from the consultation I had – I was diagnosed as autistic. It took a while to sink in, but I was relieved. Now, I have a reason to explain to friends and family why I find some things difficult. Before, all I could say was ‘I can’t do that because it makes me feel anxious’, but I couldn’t explain why. My autism makes me who I am, but the views of other people can affect me. I’ve had experiences where I tell people about my autism and how it affects me, and they just dismiss it as if it doesn’t exist. I see the world differently and I wouldn’t want to change that for anything. Yes, having autism can be exhausting, but it has many positives. I’m very sensitive, so I notice things that most neurotypical people don’t, and I have a huge amount of empathy. My autism makes me unique, and I love that.
Spring 2020 29
In-depth
like that and may not recognise the autism. Sometimes clinicians expect autistic people not to have vivid imaginations, but often autistic girls do have this, so again this can lead to a missed diagnosis.” Girls camouflaging autistic impairments is a relatively new concept. “This is sometimes a helpful description of the behaviour we see,” says Lister Brook, “but, as a psychological concept, it still needs further exploration so we are clear what we mean by this, what underpins this ‘camouflaging’, and what the potential consequences are. Anecdotally, girls seem to be more able to camouflage their difficulties, and whether they are doing it deliberately or subconsciously, we don’t know. “For some autistic individuals, being able to compensate for things that they are not so good at and develop alternative ways of doing things – like any of us do – could be a strength. For other individuals, extensive camouflaging can impact negatively on their wellbeing, as they are having to work extremely hard at covering up what they find difficult. This takes its toll on them. “We know from the research literature looking at gender differences in young children that there are some general differences in social play. Males tend to play in larger groups, and play games with explicit rules, such as in sport. Females tend to play in smaller groups and more collaboratively, where the rules are less obvious. Clinical reporting indicates that autistic girls are often better at hiding their difficulties in cooperative play by being in among these smaller groups, and blending in. People can often mistake this for ‘shared or cooperative play’, as to all intents and purposes the girls look like they are joining in. Boys who are struggling to join in stand out more readily, as they look more obviously on the edge of things, especially if they are not able to agree with – or understand – the rules.”
What’s new
“There is a growing recognition that there can sometimes be a different presentation in women and girls, and there has been a lot more research into this over the past five to 10 years,” 30 Your Autism
Clinical reporting indicates that autistic girls are often better at hiding their difficulties in cooperative play by being in smaller groups, and blending in says Povey. “The National Autistic Society developed an online learning module 18 months ago for clinical frontline professionals and teachers, specifically to help them recognise the differences and be able to support girls and women. “The Diagnostic Interview for Social and Communication Disorders, used at our charity’s Lorna Wing Centres, is recognised as a more flexible diagnostic tool for assessing women and girls. It is currently under revision to improve its clinical relevance for assessing an even broader range of profiles of autism, including those with more subtle presentations, as seen in females and males,” she adds.
Read more about gender and autism and access our online module at www.autism.org.uk/womenandgirls Watch our Spectrum Live about autistic women and girls at www.facebook.com/ NationalAutisticSociety/videos
Readers to the rescue!
Post your problems or answers on Facebook at National Autistic Society, email YourAutismMag@nas.org.uk, or write to: Your Autism, National Autistic Society, 393 City Road, London EC1V 1NG
Do you have a problem our readers can solve? Get in touch and benefit from the experience of our other members
Q A
For expert advice and information on We know exactly how any autism-related this feels. We were in this issues, call our situation quite a few years Autism Helpline on ago, but things got a bit better over time. 0808 800 4104 It’s quite common for autistic children to display different patterns of behaviour when in different environments. It’s basically your child linking different people and different places with School can be difficult for our autistic children because different behaviours. Some children do the same with of sensory triggers like noise and crowding, or social clothes – they wear certain clothes or colours for certain anxieties. If you can pinpoint what the issue is, then you places. Some will eat certain foods at school, but not at can take steps to ease the pressure your daughter is home. It’s to do with impaired social imagination and the inability to generalise information from one situation feeling. Maybe it would help if she had a ‘time out’ card that she could use when overwhelmed, or tools like a to another. So, they categorise behaviours instead. It’s probably your daughter’s way of trying to make sense of sensory box or ear defenders to help ease anxiety. Louise (blogger at mychildhasautism.co.uk) and understand the complex social world around her. Providing good, clear visual structure and finding out what your daughter thinks helps her is important. This Ken wins a copy of The Little Book of Autism FAQs: may help your child to deal better with the demands How to talk with your child about their diagnosis of school and, in time, learn to cope better. It’s very and other conversations by Davida Hartman. frustrating and hard work, but as we have found, it can be worth the effort eventually. Ken ● Visit www.autism.org.uk/differentbehaviour
Help me next!
My four-year-old autistic nephew has a meltdown whenever he has his hair cut. We’ve tried different salons and buying clippers to do his hair at home. He is non-verbal so he can’t say what he doesn’t like about it. How can we help him? Kelly
Send us your solutions for a chance to win a signed copy of The Curious Incident of the Dog in the Night-Time by Mark Haddon.
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 2020 31
iStock .com / SDI Productions
My 13-year-old daughter is struggling at school. Does anyone else’s child’s behaviour and personality completely change when at school? She insists she likes school, but she’s showing negative behaviours while she’s there. Anonymous, via our online community
Advice
“Every morning I am proud to walk into this hospital” Jay Jansen is a Radiology Clinical Support Worker for Walsall Healthcare NHS Trust. Diagnosed with Asperger syndrome, ADHD, anxiety, post-traumatic stress disorder (PTSD) and depression, his employers have measures in place to help him do his job, and he’s thriving I wish to share my story about being autistic and working in the NHS, in the hope of inspiring others. I’m 22, and I was diagnosed with attention deficit hyperactivity disorder (ADHD) and Asperger syndrome when I was 13. ADHD means my mind runs at 200 miles per hour. Asperger syndrome affects my confidence and makes me anxious doing day-to-day activities. Sometimes, it can affect my thought processes, and I struggle to find my words. I don’t like change and I find it difficult to adjust to change. My inspiration to work in the NHS came from my mother, who is a ward sister. I was previously employed as a bartender and community care worker, but I didn’t feel comfortable in these roles. I had a gut feeling that I wouldn’t settle at these places, and I never did. It wasn’t until I started in the NHS that I got rid of that gut 32 Your Autism
feeling. It was the first place that made me feel welcome. I was just looking through NHS Jobs and came across the advert for my current role. I thought it might be fun, so I applied. Little did I know that once I was actually in the job, I would really enjoy it. I had to fill in an application form, but I qualified under the ‘Guaranteed Interview Scheme’, which meant if I had the appropriate qualifications and experience, I was guaranteed an interview.
Jay’s advice for asking for reasonable adjustments at work
● Always be honest about how autism affects you – don’t try to hide it. ● If you’re struggling, speak up and ask your managers for support.
My job consists of assisting radiographers and radiologists, and ensuring the smooth running of the department. I assist in procedures such as biopsies, and help to maintain a calm atmosphere. My favourite part is making nervous patients smile and laugh, and making their experience a good one. The patients really make my day.
Supportive managers
My management and team have put things in place to make my job easier. They treat me as they would any other employee, but they give me somebody to talk to if I’m overwhelmed. They allow me time to leave for a couple of minutes, get my head together and go back in and have a manager listen to me about any concerns. They are very understanding, friendly and always willing to help, without any judgement.
Advice
My managers treat me as they would any other employee, but they give me somebody to talk to if I’m overwhelmed
As far as I’m aware, there are no other autistic people in my department. However, I’m in direct contact with the Director of People and Culture at Walsall Healthcare NHS Trust, and we are trying to set up an inclusion group where people of all cultures, races, religion and disabilities can meet up and discuss potential issues in the Trust, and what can be done to better ourselves. This directly affects patient care in a positive way. I’ve also discussed the idea of having training for all NHS staff so they know how to communicate with people with disabilities, so that autistic patients will know what’s going on, what’s expected of them and what treatment they will be having. I’m looking forward to setting up this inclusion group, raising awareness of autism in the NHS, and hopefully inspiring others to join. Who knows where I will be in 10 years’ time! No matter how long things take, you can always get to where you want to be. I want people like me to know that if I can do it, they can do it. The NHS has such a diverse workforce with an open-door policy. Straightaway, all your qualities will be embraced, and they will look at your skills and cater to your needs. Every morning I am proud to walk into this hospital and see how far I have come. Media Partner
Autism at Work Summit – 4 June 2020 If you know a professional looking to create a real change for autism and employment, why not invite them to our Autism at Work Summit on 4 June 2020 at the British Film Institute in London? Register today Spring 2020 at learn.autism.org.uk/autismworksummit 33
Spring 2020 33
Advice
Where there’s a will When your child is autistic, it’s vital to put financial plans in place for the future. Here, our legal expert answers your questions and explains how our new Wills and Trusts Phone Service can help
Many people find themselves asking what will happen to their autistic family member when they’re no longer around to care for them. You might have considered the same question – how can you make sure your loved ones are provided for and looked after in the future? You know about their needs and you want to make sure those needs continue to be met after you are gone. Care and 36 Your Autism
provision for an autistic person can be complex, especially when means-tested benefits are involved, so it is important to put plans in place, giving you and your family some peace of mind. The National Autistic Society’s new Wills and Trusts Phone Service is here to help families take their first steps towards making these plans. The service is delivered in partnership with Renaissance Legal, a Brighton-based law firm, that is expert in assisting families with a vulnerable dependant plan effectively for their future. Here, Katherine Miller of Renaissance Legal considers some of the most common questions people ask.
Advice
Katherine Miller, Renaissance Legal
wishes, the beneficiaries of your will and any trusts that may need to be set up.
iStock .com / courtneyk
What is a trust?
It is important to think about how you would like to provide for your child and what your wishes are
Why should I make a will?
Making a will gives you the opportunity to have your say in the future of those you care about, and make sure they are appropriately provided for. A will is a legal document containing instructions that ensure your wishes are followed. The information contained in your will includes the executors, guardians of your children, gifts of personal items, funeral
A trust is an arrangement ensuring that your assets – your money, property and other possessions – are held by trusted individuals (known as trustees) for the benefit of others, such as your autistic child (known as the beneficiary or beneficiaries). The type of trust required will depend on your child’s needs and the value and type of assets involved. The most appropriate type of trust to consider is a Discretionary Trust.
Why might I need to set up a trust?
When planning for your child’s future, you will need to consider whether they will be able to manage their own finances or could be vulnerable to financial abuse from other people. Also, if they are likely to claim meanstested benefits or funding in future, then it’s important to protect these. Any inheritance you leave directly to your child may cause problems for them when dealing with any money, and could result in valuable benefits and support being lost. The trustees decide how to use the assets for the benefit of the beneficiaries and are guided by a ‘letter of wishes’ – the guidance you provide ahead of time. As the trustees are in control of how the trust is used to benefit your child, you can protect your child from Spring 2020 37
Advice
having to make difficult decisions for themselves – and from any negative influence from others. Also, the beneficiaries of the trust do not have any fixed entitlement to receive assets from the trust, so any assets held in the trust will not affect their entitlement to meanstested benefits or local authority funding.
How do I go about putting plans in place?
It is important to think about how you would like to provide for your child and what your wishes are. You will need to give careful consideration to your choice of people to act as executors, guardians and trustees, as these people will ensure your wishes are followed.
The Wills and Trusts Phone Service operates on a call back basis on Fridays between noon and 2pm. You can book your slot by calling Supporter Care on 0808 800 1050 or by completing the online form at www.autism.org.uk/ willsandtrustscontact, and the team will book you in for the next available date. Katherine or Philip will call you and answer your questions. Other topics they can help with include questions about the types of trust that might be used, who can be trustees, and how a trust is managed.
You will need to appoint a legal professional who has particular experience in planning for the future for the benefit of an autistic person. They will be able to advise you of your options and help you with the decisions that need to be made.
Tina and Ben’s story Tina’s 16-year-old son, Ben, is autistic and has attention deficit hyperactivity disorder (ADHD). Ben lives with Tina, and he spends most of his time at home on the computer. Tina says: “Daily life presents a significant challenge to Ben because of his difficulties with flexible thinking, processing and organisation, and sensory aspects. Ben is very reliant on others to create a manageable, structured strategy for him to facilitate things in a way that he can manage and feel safe. “I contacted the National Autistic Society’s Wills and Trusts Advice Service as I had heard about trusts for disabled people, but couldn’t find a solicitor locally that could give me advice on this and how it worked. I wanted to make sure
My biggest worry is how Ben will cope with everyday life when I’m not here any assets or income that Ben inherited could be managed and protected by a person of my
choice, and he’d have someone to deal with his finances. “My biggest worry about Ben’s future is how he will cope with everyday life when I’m not here. The service I received from the Wills and Trusts Service was very helpful and informative. The solicitor spent time explaining everything in detail in simple terms, explaining the different types of trust funds, advantages and disadvantages, and answered any questions I had. “After the telephone conversation, I received a list of solicitors that deal with trust funds in my area, and I am now in the process of getting this done. “I now realise how important it is to have a trust put in place and the peace of mind it brings to me as a parent.”
Spring 2020 39
Meet the team
“I get really energised when I see schools participating” With World Autism Awareness Week (WAAW) on its way, we spoke to Caz Rees, Senior Fundraising and Campaigns Officer at our charity – and a keen kitchen samba dancer. Caz chats about her role in organising the event What does your work involve? I am the lead in the Supporter Fundraising Team for World Autism Awareness Week. I provide ways for people to join in with the week and raise funds to increase understanding of autism in schools, as well as with employers and the wider public. What do you enjoy most about your job? Speaking to supporters. Hearing their stories inspires me to reach more people. I worked in a school previously, so I get really energised when I see schools participating. More than 4,000 schools downloaded our free resources for World Autism Awareness Week last year, which is incredible. What are some of the challenges? We have so much to offer during the week that it could be a World Autism Awareness year – which it is in a way, as the money and awareness raised has a long-lasting effect.
Caz out training for a run
Why is WAAW so important? It gives people a platform to discuss autism and to help others support autistic people. It is a chance for people to come together and raise vital money to help transform lives and change attitudes. How can supporters get involved? Take part in one of our major events – join a Spectrum Night Walk or take on the 7k for 700k challenge! What do you do when you’re not working? I love to dance. It makes me happy to slow waltz or samba around my kitchen when cooking a good meal.
World Autism Awareness Week runs from 30 March to 5 April. Get involved at www.autism.org.uk/waaw
Spring 2020 41
Notebook
Everything you need to read, do or see
Our Autistic Lives
AUTHOR: Edited by Alex Ratcliffe PUBLISHER: Jessica Kingsley Publishers PRICE: £14.99 VERDICT: Gripping, intriguing and honest accounts of autistic adults This is a collection of personal accounts from 51 autistic adults, aged 20 to 70+, from all walks of life. They write honestly and openly about good and bad experiences, including growing up; mental and physical health; relationships; sexuality; family and friends; and all aspects of life. As an autistic adult myself – who wasn’t diagnosed until my late 40s – it gives me hope, and reaffirms my feelings and experiences, providing great comfort. I am comforted by the fact that these people got to share their stories – and that their voices have been rightly heard. Vanessa Hughes, Your Autism magazine reader
Girls and Autism
AUTHOR: Edited by Barry Carpenter, Francesca Happé and Jo Egerton PUBLISHER: Routledge PRICE: £24 VERDICT: An interesting insight into autistic girls’ experiences Why do so many autistic women and girls go undiagnosed? In this collection, autistic women, their family members, and autism professionals explore this question in detail.
Become a reviewer
Would you like to join our reviewer list for books and products? Email us at YourAutismMag@nas.org.uk
The writing is entertaining and educational in equal parts. Writers share their personal experiences and opinions, as well as offering practical advice on seeking support for autistic women and girls. Whether you are an autistic woman or girl, an autism professional, a parent to an autistic child, or if you are simply curious about autism and gender, this book is guaranteed to be an interesting and informative read. Hermione Cameron, Content Officer, National Autistic Society
Giveaway
We have a copy of Keep Clear by Tom Cutler to give away to members. Tom is a bestselling author of humour books and this memoir is his wonderfully bittersweet account of living unwittingly with Asperger syndrome before he was diagnosed, aged 55. For a chance of winning the book, email your details to YourAutismMag@nas.org.uk by 30 April, quoting ‘Keep Clear’. The winner will be announced in the next issue. The winners of last issue’s competition are Beryl Cunningham and Gurmeet Singh. They each get a copy of Uncomfortable Labels by Laura Kate Dale. Congratulations!
Spring 2020 43
Notebook
The Parents’ Practical Guide to Resilience
AUTHOR: Jeanette Purkis and Emma Goodall PUBLISHER: Jessica Kingsley Publishers PRICE: £11.99 VERDICT: Empowers parents to help them promote resilience and independence Written from personal and professional experience, this practical guide encourages parents and professionals to build
better futures for autistic children. Interesting and informative, it gives parents tools to increase resilience and independence in children in common life situations such as at school, in new environments and forming relationships with other children. Detailed contents and layout within chapters make it easy to find topics quickly. Boxed sections offer a quick guide to a child’s acquired resilience, and where help may be needed. Recommended. Esther Wall, Your Autism magazine reader
Our six favourite… podcasts
1
18,000 Seconds on Autism
A funny and engaging series where autistic guests discuss life on the spectrum, and the perks and challenges of thinking differently. Highlights include host Robyn Steward falling off her chair laughing. Available at www.bbc.co.uk/ programmes/p06sdq0x
2
Parenting Spectrum
Fiona and Travis are parents to Patch, who is autistic. In this series, we catch a glimpse into their day-to-day family life, as they offer tips and advice to other parents of
children on the spectrum. Available at www.abc.net. au/radio/programs/theparenting-spectrum
neurodiverse yoga. Available at www. differentbrains.org/ spectrumly-speaking
4
Autisable Dads
3
Spectrumly Speaking
Join hosts Haley Moss and Dr Lori Butts as they interview autistic women from all walks of life. Topics range from gender representation in non-profits to
One for the dads out there. Hosts Joel and Rob chat about autism from a parent’s perspective, interviewing parents, professionals and autistic people. Available at autisable.com/ multimedia/autisabledads-life-with-autismpodcast
5
Stories About Autism
A sensitive and insightful series in which autistic people, their friends
and families share their personal stories. Guests include Chris Bonello, autistic man and creator of the Autistic Not Weird blog. Available at storiesaboutautism.com/ category/podcast
6
The Autism Podcast
The Autism Podcast interviews guests from across the autism community, including professionals, parents and autistic people. Highlights include a discussion with Venessa Bobb on autism in the BAME community. Available at theautismpodcast. podbean.com
Do you have an idea for our six favourites section? Email us at YourAutismMag@nas.org.uk
Spring 2020 45
Snapshot
I’m a…. radio DJ
Ross Watchman, 18, got his lucky break in radio after a work experience stint at his local station
Going solo
I studied media studies at Cottenham Centre School, near Cambridge – a specialist sixth form for people with special educational needs and disabilities. At the back of my classroom was a soundproof room with a mixing desk, and I thought – we could do something here. We could create a radio station of our own. The school head gave me
46 Your Autism
the green light straightaway. All we needed to buy were some headphones and a couple of microphones. And I used my technical knowledge to train other people to use the radio gear and do shows of their own. It has given the sixth form a message: if you struggle to find your confidence talking to people in person, just share your personality through the radio.
It all started when I was looking for a work placement during Year 10 at school. I wanted something media-related, and the school’s work experience coordinator asked if I would be interested in going to a community radio station, Cambridge 105. I jumped at the chance. Ten minutes after I arrived on the first day, I was on air talking! I didn’t expect to be on air that quickly. I was a bit nervous, but not enough to put me off. I then helped out doing little talky bits on the radio and writing out the news, and with broadcasts that took place away from the studio. After my work experience, I kept in touch with the manager at the station, and later contacted a guy called Neil Whiteside, who I’d sat in with on my work experience. Neil wanted me to get all the knowledge and time in the studio that I could. He was really supportive, and invited me on to his show. One day, the drivetime presenter was unavailable, so Neil offered to cover the show after his usual afternoon slot. Neil asked me if I’d like to co-present with him and read the news headlines at 4.30pm and 5.30pm – and I did it! It was my first time reading the news, and I got on really well. It was a big thing, reading the news to thousands of listeners, but I got through it pretty much without any mistakes. Neil was amazed.
Big break Some days later, the manager of the station came in and said that he’d heard me on
Snapshot
Ross realised his dream of meeting his BBC Radio Two hero when he was invited to meet Ken Bruce and watch his show live in December 2019
Neil’s programme, and asked if I’d like to have a go doing the early breakfast show on a Sunday morning. I knew that sooner or later I would get something, but I didn’t realise it was going to come that quickly. So that gave me my show. Now I present every Sunday morning between 7-8am. I pick the music from a playlist, with a couple of tracks from the new music list that we have to play. I work out a script beforehand, and each week I try to introduce the show differently. I prerecord it at home, as it would be hard for me to get up for a 7am show. I have a home studio, which is a great advantage, and record on to my computer using the mixing desk. I then edit it – it needs a lot of editing! My dad is really into music, and he helps me to pick the tunes for the show, which we do on a Sunday afternoon. Pretty much as soon as the show goes out, we
start the next one. There are a couple of features that I have come up with for the show – ‘The morning dance’, a track that gets you dancing round the house, and ‘Something quirky at 7.30am’ – a track that always raises a smile. I’ve now been given an open-ended offer to continue the show for the foreseeable future. I really enjoy it – it has given me a real chance to share my personality, and I sometimes struggle to do that in person. I feel that you hear the ‘real me’ on the show. Long may my success continue – one day you may hear me on the BBC!
Would you like to be featured here? Let us know about your achievements at YourAutismMag@nas.org.uk
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