YOUR Summer 2022
Pitch perfect Rugby star Harry Wells and Oscar
Holiday season
Tips on travelling
Swings and roundabouts
Why parks need to be autism-friendly
Plus
Adapting therapy to suit you, leaving school, and budget-friendly sensory toys
YOUR
Holiday time Summer 2022
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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: 020 3859 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 Summer Vol 56, No 2 National Autistic Society ISSN 2055-0413 The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a website does not necessarily imply that our charity endorses or supports the group or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.
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Soffi tells her story
Contents What’s new?
A round-up of the latest news
“We knew what we wanted for our children”
04 08
Michael Baron, founder member of our charity, looks back
Eurovision fan
42
Art competition
26
Inclusivity in parks
28
Enter our extraordinary 60th anniversary art competition
Why parks need to be more inclusive for autistic people
My diagnosis
11
Readers to the rescue
32
Interview
12
Asking for adjustments
34
“Now I feel so happy”
16
From school to college
38
Notebook
40
Basketball star Kizzy Spence
Rugby star Harry Wells talks about his autistic son, Oscar
How Soffi Edwards’ local branch has helped
Making dentist visits easier
when using mental health services
Planning a smooth transition
Volunteering
20
Things to read, do and see
Happy holidays
22
Jethro Offemaria tells his story
Brothers Jimmy and Mark Carter on restoring Hopwood Hall
How to make travel easier
I’m a... Eurovision Song Contest superfan
priority is for society people different”
“My top to accept that are very
Michael Baron
42
08
Summer 2022 3
What’s new?
Get in touch!
Our round-up of the latest news and views
Long-awaited Government proposals for children with special educational needs in England were published in March. We believe that while the SEND Review recognises many issues autistic children face in education, it does not go far enough. Our School report 2021 showed that education is simply not working for autistic children. The Government’s ambition is to improve provision for children with SEND, including autistic children. There is a pledge to end the postcode lottery for support and to improve and standardise processes for education, health and care plans. In our School report, we urged the Government to tackle delays
in getting support, as well as improving the support on offer. The Government says it is committed to making mainstream education more inclusive. We are disappointed that it has stopped short of pledging full mandatory autism training. This would make a real difference to the lives of many autistic children. From our research, seven in ten autistic children said school would be better if more teachers understood autism. We will be responding to the Government’s consultation on its plans and are encouraging our supporters to do so too. It’s vital that the voices of autistic people, families and carers are heard.
Read the SEND Review proposals at bit.ly/SEND-proposals For guidance on responding to the Government’s consultation by 1 July, visit autism.org.uk/campaign
Thank you for our £600,000 in 60 days challenge Thank you so much to everyone who contributed to our challenge to raise £600,000 in 60 days. The 60 days began on the first day of World Autism Acceptance Week – Monday 28 March – and ended on Thursday 27 May. At the time of going to press, we were close to hitting our target! The money raised will help us continue our vital work supporting autistic people and their families. 4 Your Autism
iStock .com / monkeybusinessimages
SEND Review “does not go far enough”
News
Resources for Ukrainian refugees and hosts We now have autism information on our website for Ukrainian refugees and their host families in the UK. It includes information about schools for autistic children, as well as downloadable PECS symbols with text in English and Ukrainian. We will be adding to these resources in the coming weeks to support Ukrainian people arriving in the UK. We have also written to the Home Office about the delays in processing visas and the impact on autistic refugees. Meanwhile, AutismEurope has called on political leaders to urgently address the needs of autistic people during the Ukraine crisis. They said: “At least 1% of the population is on the autism spectrum, therefore
we can estimate that more than 440,000 Ukrainians are autistic. Autistic people and their families are particularly vulnerable during armed conflicts. Most autistic people generally need routine, familiarity, and a high level of predictability. Many are exceptionally sensitive to noise and other sensory stimuli. Stressful conditions and severe sensory overload can trigger intense distress.” Autism-Europe has called for autistic people in Ukraine to have access to online support to help them cope with the high level of stress they are experiencing. Our guidance is available at autism.org.uk/Ukraine Read how you can help autistic people in Ukraine at bit.ly/autismUkraine
Thomas & Friends™ new sensory clothing range We’re proud to announce the launch of a Thomas & Friends TM clothing range, designed to be autism-friendly. We worked closely with the Thomas & Friends TM team to develop the range, aimed at autistic children and young people aged five to 16. In April 2021, we conducted a survey of more than 1,500 parents of autistic children. Parents said their children like pull-on clothing, easy dressing clothing, no labels, no buttons and Velcro fastenings. Parents in focus groups at our Helen Allison School also said their children preferred softer fabric. The clothing range has been designed with these insights in mind. It includes loose-fitting t-shirts, jumpers, and tracksuits in soft fabrics, all designed for easy dressing. Twenty per cent of all sales from this range will go to our charity, to help us continue our vital work providing information and campaigning for a society that works for autistic people. The range is available now at Character.com Summer 2022 5
Diary dates What to do and where to go
10-11 June 2022, Manchester 17-18 June 2022, London 24-25 June 2022, Birmingham The Autism Show
The Autism Show, in association with the National Autistic Society, is returning this June, packed with informative talks, one-to-one clinics and hundreds of specialist products and services. Highlights this year include broadcasters Melanie Sykes and Dr Carrie Grant speaking in the Autism Matters Theatre, the innovative Cubbie Sensory Hub, and the interactive Rebound Therapy feature in partnership with Playgrade Trampolines. As a member, you get a 10% discount on tickets to The Autism Show. Just quote NASM22 when you book your tickets at autismshow.co.uk
13 August 2022 Ben Nevis
Whether this is your first trek or you’re a mountaineering veteran, join us for a great day out! Take on Ben Nevis, the highest mountain in the British Isles, and help us to make a real difference to the lives of autistic people and their families. Find out more at autism.org.uk/ben-nevis
7-9 October 2022
Autism-Europe Congress
Autism-Europe’s 13th International Congress will be held in Krakow, Poland – with additional virtual attendance options available. This year’s theme is “Happy Journey through Life”. Find out more at autismcongress2022.org 6 Your Autism
Join our autism insight panels It’s vital that all our work is informed by the views of autistic people and their families. Join our autism insight panels to help shape our work and future campaigns. Find out more and sign up at autism.org.uk/insight
New inclusion award We are delighted that a number of organisations are working towards our new Autism Inclusion Award for mainstream providers. The award recognises mainstream providers in education, general health, community activities and the criminal justice system that are working hard to support autistic people. Find out more about the award and how to apply at autism.org.uk/ autism-inclusion-award
Thank you to everyone who supported our £600,000 in 60 days appeal to celebrate our anniversary!
Interview
“We knew what autism was and what we wanted for our children” To celebrate our 60th anniversary, we chat with Michael Baron, founder member of the National Autistic Society How did the National Autistic Society begin?
I met Helen Allison, Peggy Everard, and the other founding parents at Mencap in 1961. We kept talking, and eventually met up at one of our houses in north London. We decided to form a charity; Izzy Dalton was Vice Chair, Helen Allison was Secretary and that was the start. Between us, we knew lots of parents that would be interested in joining. We decided to call a meeting in May 1962 and formed the Society for Psychotic Children. We’d all had
similar diagnoses for our children, juvenile schizophrenia or psychosis. Under Lorna Wing’s influence and the work of Leo Kanner [AustrianAmerican psychiatrist who published a landmark paper on autism in 1943], we thought maybe psychotic wasn’t the right name. In October 1962, we changed the name to the Society for Autistic Children. We were very ambitious and thought with the right teachers and support, our children would begin to talk. Of course, we were wrong. There were a few more challenges than we initially expected.
So, as a team, we decided to draft a document, a mission statement, that set out what we wanted to achieve.
What were those aims?
Special education for autistic children. We also wanted to ensure there was training for teachers that met the specific needs of autistic children and the necessary information services for parents. At the time, it was very difficult to get doctors or psychiatrists to diagnose autism.
What would they diagnose autistic children with?
Mentally handicapped was the buzzword at the time. It was very difficult to persuade the world about autism. The biggest issue for us was making sure people understood the difference. For many years, ‘autistic’ was even confused with ‘artistic’. And now, it’s become the diagnostic category all of its own, and we say autistic children and adults.
From writing down those aims, how did you start the first school? Michael Baron, founder member of the National Autistic Society 8 Your Autism
We knew what autism was and what we wanted for our children. At the time, the only special education
Interview
being offered was by Sybil Elgar at a nursery school in St John’s Wood. In 1965, we were able to establish our first school in Ealing. We moved Sybil Elgar there and our little school started to grow.
How did you feel when you saw Sybil Elgar teaching the children and giving them the education they needed?
I felt marvellous! It was what we had hoped for and we had reached that milestone. From that small number of children, maybe there were 10 or 12, we went on to acquire Number 12 Florence Road and then Number 14, and added a boarding part to it. So, a bit of Florence Road, Ealing, was given to autistic children who came from all over London, some by taxi, some on longer journeys.
Somerset Court was the first specialist residential service for autistic adults in the UK. How did that begin?
The children at the Florence Road school grew up. When they reached 16 and 17, their parents began thinking about what was going to happen next. It was clear that many would be dependent and need further education. A group of parents began looking across southern England for houses that could be converted and land we could use for gardening activities. Finally, we found Somerset Court, where we started a community for autistic adults. My son, Timothy, lived there from 1974 to 2003.
Michael Baron and his son, Timothy, in the 1960s
As well as the recognition of autism, what’s the biggest change you’ve seen over the past 60 years?
Autistic people now have the right to be treated as adults like anyone else, and society allows them a role and a life. Whereas before the Society was formed, before those parents got together, children who exhibited the characteristics now called autism were often in residential hospitals. They were often viewed as uneducable. Now in 2022, 60 years later, we’re in a very different world
Read more about our charity’s amazing history at autism.org.uk/timeline
for autistic people living in the community. There is still a need for residential communities, of course – people like my son, for example, who is severely disabled and will be dependent for the rest of his life.
We know there is still so much more to do to create a society that works for autistic people. What would be your top priorities?
My top priority is for society to accept that people are very different from one another. While we all need support, those who are autistic need more support than others – indeed, some need a great deal of support. And we need opportunities for more autistic people to be able to work or volunteer in the community, to lead richer lives. So, there’s a lot still to do. Summer 2022 9
My diagnosis
“Words jumping around the page was normal for me” Teenage basketball star Kizzy Spence, 17, says her autism diagnosis was a huge relief I always struggled with concentration at school. Now I understand this was because of sensory overload and visual stress, making it difficult for me to focus on the page. I can’t read black text on white paper. I wouldn’t have known that words didn’t jump around on the page, as this was normal to me. The teachers didn’t understand why I was struggling so much with reading. My parents did wonder if I was autistic. When I was diagnosed aged 14, I felt a huge sense of relief because it gave me answers to why I was different – why I found school and relating to others so difficult. I had played football since the age of four. But, after I fractured my knee, it hadn’t healed enough for me to show off my skills in the Manchester City Girls’ team trials. My mum knew how disappointed I would be, so she looked for another sport for me to join in with. There was a basketball community around the corner, so I decided to try it out. After three weeks, they asked me to be on the under-14s team. I progressed on to the Basketball England pathway and spent
a couple of years with Manchester Mystics before the biggest challenge: moving to Oaklands Basketball Academy. Being an athlete does a lot for my selfesteem, which has been low at times. But there’s also the pressure to always be my best and really feeling it deeply when I make a mistake. I will always have anxiety, but I’m developing a range of strategies for different situations. Getting help, taking time out and learning grounding techniques all work for me. I would love to go to the USA to play basketball professionally. But I’ll need support and understanding to help me get used to a new way of life. I’d also like to become an ambassador for young autistic Black people, telling my story of struggling with confidence and how I overcome my anxieties on a daily basis.
Want to share your or your child’s diagnosis story? Email YourAutismMag@nas.org.uk Summer 2022 11
Interview
Leicester Tigers rugby star Harry Wells talks fatherhood, holidays, and what he wants to see for his autistic son, Oscar
“Being a parent to someone who is autistic is really rewarding” 12 Your Autism
Interview
When was Oscar diagnosed as autistic?
Oscar was diagnosed aged two. He’s a twin, so we could see differences between him and his brother, Theodore, from a very early age. This was in terms of how different stimuli affected him and how he was fixated on certain things. Lining up toy cars was one of his favourites, and he would become quite distressed if someone disrupted his line. Changes of routine really distressed him, too.
How does being autistic impact Oscar on a day-to-day basis?
The smallest thing can upset Oscar. So a change of routine in the morning can really disrupt him and you know it’s going to impact the rest of his day. He can’t always understand why he can’t do things. With Oscar, it’s a strength, but it’s also quite difficult. He’s very independent, he loves doing things himself. But, at the same time, he doesn’t understand why he can’t walk himself to school or cross a road independently. His attention to detail is fantastic. He’s amazing at Lego and is able to make such intricate designs. He’s absolutely fascinated by robots and loves space. He wants to be a scientist when he grows up. Being a parent to someone who is autistic, seeing them make gains and meet milestones is really rewarding. Over the past year, Oscar’s speech has improved so much. His understanding of instructions has improved, too, but whether he follows them or not is a different thing! If he wants to do something, but doesn’t understand why he can’t, it can cause distress.
What do you do in that situation?
Initially, we’ll reason with him and explain why he can’t do a certain thing. We then try to distract him and get him to do something else he’s interested in. He sometimes takes himself off for a little bit of quiet time as well. Another thing we’ve enjoyed lately is seeing him recognise when he is becoming overwhelmed. He’s handling his emotions a lot better. At school, they say he’s good at recognising when he gets angry. He takes himself off for a bit of quiet time and then gets back into the group when he’s ready. That’s really big for him.
How does Oscar get on with his twin brother Theodore?
He’s ever so affectionate with his brother. They’re best friends. They’ll wake one another up at six in the morning, get up and play together.
What is being a parent to an autistic child like for you?
It’s so rewarding at the moment. You see Oscar hitting milestones and just continuing to flourish. I know he’s only six, but you can see how much he wants to do himself, which is great. When Oscar was younger – but not so much now – he would get anxious going out. It would be difficult to know how the day was going to go. You didn’t know what people’s reactions would be to him having a meltdown or becoming exceptionally distressed. If someone made a comment, we had to try not to get too worked up about it because that would rub off on him, and could escalate the situation further. So, at the minute, fatherhood is so rewarding, but when Oscar was younger, it was a very anxious time trying to predict what was going to happen.
Harry is an ambassador for our charity Summer 2022 13
Interview
Do you think the public understands more about autism now?
There’s more awareness. I wouldn’t say there’s much more understanding. People recognise the sunflower lanyard. If Oscar’s wearing his lanyard, people pick up on that quite quickly because it’s easily recognisable and it’s everywhere. That’s quite helpful for him. I don’t feel like there’s the understanding of what autism means and how things affect people differently. No two autistic people are the same. I think people’s idea of autism is of people who are exceptionally ‘high functioning’, who love numbers and have great memories. It’s really not the case for Oscar. People don’t understand how different stimuli can affect him, or how he can’t regulate his emotions. But I would say that people do recognise and understand it a little bit better. Over the past couple of years, I’ve seen a change, but there’s definitely more to come.
We know that the school holidays can sometimes be stressful for autistic children and their families. How does Oscar cope?
Oscar actually loves being at home. We keep to a routine and find things to do that interest him. He loves to be active, and out and about. He’d rather be at home than at school, so the transition back to school is the more difficult part.
Do you have any trips or holidays planned?
We’re going to Cornwall. We’ve got a cottage booked so we can keep to a routine, and we can keep mealtimes as regular as possible. 14 Your Autism
Do you have any other tips for going on holiday or out and about?
We don’t always stay together as a family of four on trips. We visited Twycross Zoo, and I took Oscar off and let him lead me to the animals he wanted to see. He likes to be in charge! And it meant he wasn’t waiting around for his brother. We then reconvened at lunchtime.
You’ve had the most amazing season with Leicester Tigers. How are you celebrating as a family? Sporty Oscar on the rugby pitch
If we need a day to wind down, we have our own space, which is really important. Last November, we went to Disneyland and they were so accommodating of people with special needs. You have to take some documentation: proof of diagnosis, Carer’s Allowance, or a Disability Living Allowance form. Then you get a priority pass that means you don’t have to wait in queues at all. Oscar would really struggle to stand in line. When they have the parades, you can stand in an area that isn’t too crowded. You can book meals on an app to make all your mealtimes consistent with what you do at home. And I know, for some parents, planning ahead helps to alleviate a lot of anxiety on a trip.
The boys come to a lot of home games, which is brilliant. Oscar absolutely loves the atmosphere. After the game, he’ll do a lap of the pitch, high-fiving the fans. He’ll go into the changing rooms and everyone’s so good with him. He’ll walk in and say, “Have you all missed me?” or high-five everyone.
Is Oscar sporty?
He’s just started junior rugby club. The coach is really good and so understanding. It’s a group of 35 children, and it’s good to see how Oscar slots in and does everything. One of his greatest strengths is swimming. He can do a length of the pool and we’ve seen his attention and ability to follow instructions improve. From a sensory point of view, he’s always loved playing with water. It’s great to see him using it as a strength. We’re so lucky, he’s willing to try anything.
Read more advice on preparing for the summer holidays at autism.org.uk/summer-holidays We have more travel tips on pages 22-24.
Do you have a place in the 2022 TCS London Marathon? If you have already secured a ballot place in this year’s event, we’d love for you to join our largest Team Autism ever! You’ll receive a free branded running vest, dedicated support throughout your journey and an invite to our post-race celebration.
www.autism.org.uk/jointeamautism
Real stories
“I was isolated and lonely, now I feel so happy to be socialising with other people like me” We caught up with Soffi Edwards, who we featured in the Autumn 2019 edition of Your Autism. Now 18, she writes about how much her local branch has helped her At school, I felt so isolated from other people my age. Making friends seemed easy for everyone else. I felt like an outsider looking in. Through the National Autistic Society, I began to meet other people like me. And people who accepted me for who I am. There was light at the end of the tunnel, but it took me a while to find it.
School days
Soffi Edwards 16 Your Autism
At school, the teachers and staff didn’t seem to understand autism. They blamed me for being disruptive and I spent most of my days in the time-out area. But I wasn’t disruptive, I was overwhelmed. I wasn’t ‘hard work’ – I was anxious and stressed. Because of my autism, I was bullied every single day at school. They called me names and isolated me. Despite all this, I finished my GCSEs. Maybe I could have done better, but I was hardly ever in class because of the bullying. And at the end of term, everyone celebrated without me. I felt awful when I realised – I had no-one to celebrate the
Real stories
end of school with. I avoided so many meet-ups because I was scared the bullies would be there, too.
Finding my crowd
Following my diagnosis, I heard about the National Autistic Society, and I reached out to get some advice. I was told about the local branches, so I found the one closest to me, which was Blaenau Gwent. I arrived and immediately felt welcome. I felt so happy to be socialising with people who had the same needs as me. I realised you should never be ashamed of who you are. Today, I have lots of people who check up on me. And it helped finding people who have gone through some of the same experiences as me. The social nights have really helped build my confidence. I’ve organised events, such as singing nights. And I call the numbers out at bingo. I would never have done any of that before. The branch has really recognised my needs, and tries to find ways to help. There are other over-18s, and the branch is setting up a new peer support group for us. It will provide a space where we can talk about our experiences together, and help and support each other. There really isn’t much other support after you turn 18.
Future plans
A lot has changed over the past couple of years. I studied childcare at college, and had an apprenticeship in a nursery. The local branch gave me a reference, which really helped my application. I have a boyfriend now, too. Because of my anxiety and obsessive compulsive disorder, it really helps having someone who understands me, who is with me every step of the way. Since I’ve met him, I’ve looked at myself a lot differently to how I did at school. Having a boyfriend who gives you compliments instead of putting you down all the time helps. I’ve got friends from college, too; I was the loudest in the college class by the end of term!
Isolation – the facts ● Autistic people are one of the most lonely and isolated groups in the UK, with 79% of autistic individuals feeling socially isolated. ● A lack of public understanding means that 50% of autistic people and families don’t go out and socialise because they are worried about how people will react to them. ● Just 29% of autistic adults are in work, removing another vital source of connection for many people. We will not accept a world where autistic people feel ignored, isolated and marginalised. With your help, we are determined to change these shocking figures. At the National Autistic Society, we have 116 local branches and social groups covering almost three-quarters of the UK. Last year, our branch network reached more than 18,000 autistic people and families, providing invaluable social opportunities, combating isolation and helping to build confidence. Find your nearest branch at www.autism.org.uk/branches Our unique online community allows like-minded users to ‘meet’ each other, and share their thoughts and experiences in a safe and welcoming space. This is a vital source of support for the 520,000 autistic people and their families who we reached in 2021, and the demand continues to increase. You can join our online community. Just visit www.autism.org.uk/community
Summer 2022 17
Real stories
One of my joys is now being an active member of my local branch. I like to help others if they’ve just started coming to the group, make them feel comfortable and help them to make friends. I know that there are those who are worse off than me and who struggle really badly. One day, I’d like to become a teaching assistant for children with special needs, to help give support to young people going through difficult times like I did.
Advice for my younger self
If I was giving advice to my younger self when I was at school, I would tell myself to keep going, because there is a light at the end of the tunnel. Giving up isn’t the answer. Some people might want you to give up, but you have to prove them wrong, and keep proving them wrong. The National Autistic Society provides a lot of opportunities for people like me to get 18 Your Autism
support and make friends. Some people have the most horrible friendship issues or difficulty in speaking. With each event at the branch, you walk in and you’re welcomed straight away. You’ll always walk away feeling better.
Will you help change lives in this, our 60th year? We have had an extraordinary 60 years at the National Autistic Society. Help make the next 60 count by ensuring that an autistic person like Soffi need never feel alone. Give a gift today to our appeal and help provide a lifeline to an isolated autistic person through our branch network or online community. Visit www.autism.org. uk/memappeal
Volunteering
“We’re bringing Hopwood Hall back to its former glory” Brothers Jimmy and Mark Carter volunteer at Hopwood Hall in Middleton, Greater Manchester. They tell us about helping to restore the old manor house and how it helps their confidence
Tell us a little about yourself, and what being autistic is like for you
Jimmy: I love anything to do with the outdoors, such as camping and walking my border collies. Being autistic has pros and cons. It’s hard to socialise and interact with people you don’t know. It makes you more nervous around them, and sometimes you can’t always understand a person’s emotions. Mark: I have huskies. I enjoy walking through our local woodlands as not many people go there, so I don’t
20 Your Autism
have to be nervous. It’s so peaceful. Me and my brother always try to do things and tackle any challenges together.
What’s the Hopwood Hall restoration project?
Jimmy: Hopwood Hall dates back to the 14th century or even further. It is a Grade II listed manor house in need of some serious TLC. It hasn’t been used for more than 30 years, so has just been left to crumble. There are floors missing and badly damaged walls and ceilings. It’s so sad to see a great building in this state.
Volunteering
How did you start volunteering at Hopwood Hall?
Jimmy: We stumbled upon the house while walking our dogs in the early 2000s. After that, every weekend we would go and sit on the grass, just looking at this big house. We always had a laugh, we used to say “wouldn’t it be amazing to live there, so secluded and hidden from everyone?” Then, in 2013, we found out about one of the ancestors of the family who used to own the hall. He’s an American actor called Hopwood DePree and he wanted to restore the property. We met him and told him our story about finding the house on our walks. He was really interested. Since then, we have volunteered, bringing the house and gardens back to their former glory.
What do you enjoy most about volunteering? Jimmy: Being part of a dedicated team that wants what is best for Hopwood Hall and to finally see the day it is fully restored. Then I can
look back and say I was a part of that work and part of the history of restoring the manor house. Of course, you can’t forget the tea and biscuits, too! Mark: I enjoy working in the gardens and hall, clearing rooms safely and supervised. I’ve found old 18thcentury pottery in the gardens and uncovered the old rose garden path.
How does volunteering help you?
Jimmy: It’s helped us both to build up more confidence to be in a group of people. When we first started, we never really spoke and just sat at the back of the room. It’s hard to open up about being autistic to others. But, as we’ve slowly got to know the other volunteers, it has helped us feel more comfortable. Now we greet the others, talk a bit at dinner and then say our goodbyes at the end of the day.
What’s been your proudest moment?
Jimmy: Being presented with my volunteer award certificate for my hard work and dedication. Mark: Being able to help restore something I felt was close to me, as I love the history of old buildings. We were on BBC’s The One Show, too. Being filmed was hard for me. But when I got home, I was proud of myself for doing something that was completely out of my comfort zone.
Hard at work at the hall
How is the restoration going?
Jimmy: It’s coming along nicely. The gardens have some lovely flowers growing. We’ve got bird feeders, so get to see and hear the birds when we work in the gardens, which is so peaceful. There is still a long way to go inside Hopwood Hall as most rooms have no flooring or ceiling. It’s a big job to tackle.
What’s your advice to other autistic people about volunteering?
Mark: Find something you are passionate about and maybe do an hour a week to help you take those first steps. Only you know your own strengths and weaknesses, but I wish you the best of luck.
Like to be featured here, talking about your job or volunteering role? Email YourAutismMag@nas.org.uk Jimmy (left) and Mark
If you would like to volunteer for the National Autistic Society, visit www.autism.org.uk/volunteering
Summer 2022 21
Travel
Happy holidays Alex and Jenny explain what makes travelling easier for their son Ben. And Max discovers what works best for him
Alex and Jenny find preparation is key for holidays with seven-year-old Ben We’ve travelled with Ben since he was small, long before we received his autism diagnosis at the age of five. We’ve always found these steps helpful and continue to use them even now: ● A countdown to the event to build familiarity with what is going to happen. 22 Your Autism
● A continuous, positive and enthusiastic description of what the holiday will include. These are often specific to Ben and are easy things such as the hotel bed will be so comfy, and the beach is really close so we won’t even need to walk very far.
● Exploring where the holiday will be and what it will look like online, alongside using Google Maps to find places we already know are acceptable for food and drink. ● Packing our suitcase in advance. The week we go, we leave the suitcase open in Ben’s room and
Travel
he will place what he wants to take with him. This will change throughout the final days, but he will be happy with the final choices. ● Pre-packing snacks, and involving Ben in what will be available at certain stages of the journey. ● A travel buddy. He has a collection of soft toys that help to comfort him. We found that the multi-use ‘Florge’ (short for floppy armed George) as friend and pillow was best, and he is now an essential. We are glad that our love of travel has helped settle Ben into the idea, routine and experience of travelling. However, it is still a huge event for our family when it happens, and can have its challenges. Seeing Ben enjoy being away has always been worth the risk of a difficult journey – and we would recommend getting some domestic weekends away to practise if you are still unsure. We relied on these mini-breaks when we could during the past two years to keep him aware, and are now looking forward to further horizons!
Max relaxing during one of his trips
Max lives in Vietnam where he teaches English. Diagnosed with Asperger syndrome aged five, he’s travelled extensively It’s unusual to read a travel article from an autistic person, but rest assured it can be done; I’m proof of this. Asperger syndrome caused me many difficulties in my childhood and adolescence – socially, intellectually, and emotionally. However, I’m fortunate to have had support from family and professionals. Travel is sometimes challenging, but now I take it in my stride. But I still have a few personal requirements to make it work for me.
Take time for yourself
Ben with his cuddly toy, Florge
When some people think of autism, the first thing that springs to mind is complete social ineptitude. This is sometimes the case, but it’s a short-sighted assumption that we all match this
stereotype. However, social interactions do wear me out sooner than they do for many others. When these times come, I like to get away and have minimal human interaction. We are often more prone than the average person to sensory overload. This means that all the new faces we see, voices we hear, scents we smell, flavours we taste, and grounds we tread can leave us feeling a little burnt out. I find that socially detoxing for a while means that I enjoy it more when I interact with others. It also helps me travel without feeling in over my head. My advice is to take solitary walks in pleasant areas. If you’re in a busy urban area, you can go to markets and plazas. The colours of plant life and the Summer 2022 23
Travel
intrigue of various forms of architecture in these places make for great pastimes. Just be mindful of ‘tourist traps’ so you can avoid fraudsters, trinket sellers, and shoe-shiners who won’t take no for an answer. I also recommend an amble through ambient natural landscapes that don’t require too much physical exertion. Enjoy the quiet, the wildlife, plant life, and being a part of the nature surrounding you.
Get plenty of rest
Back onto sensory overload, it’s time to address its primary symptom: exhaustion. Travel is tiring. For those who are autistic, tiredness can be twofold what other travellers experience. The message is clear: slow down, take a break. For autistic people travelling in unfamiliar environments, more time is necessary to ensure the enjoyment of their explorations. Historically, a few days of relaxation somewhere that I’ve already done lots of things has been invaluable.
A healthy amount of wariness An unfortunately common trait among autistic people is gullibility. I have been ripped off many times because of naivety. I could have easily avoided many such incidents with a greater level of caution. One example was accepting a tour of two small churches in Quito, Ecuador. I thought the elderly man wanted to share a part of his city’s history. It turned out that he did it to ask my travel partner and me for money. My friend smelt a rat from the off; I didn’t. I urge anyone to be cautious of scams while travelling, especially those on the spectrum. 24 Your Autism
Max recommends being part of nature
Finding something that interests you and can be done on lengthy journeys is imperative The rest is common sense. Don’t wander into areas that you don’t know are safe, with possessions you don’t want to lose.
A comforting portable hobby
Finding something that interests you and can be done on lengthy journeys is imperative. Doing something enjoyable and familiar is a good way to keep your mind busy without overburdening it. In my case, it’s reading. Another option is music. Download songs onto your mobile phone and listen away. A power bank is invaluable to keep phone batteries juiced up. Other portable hobbies include puzzles and problem-solving books (such as sudoku and kakuro). For avid
gamers, a handheld gaming device is an option. As for film enthusiasts, a device that can play feature-length films in high resolution is advisable.
Final word
I feel very strongly that travelling is one of the best things you can do. I hope these tips help you to enjoy it as much as possible. Read more from Max on his blog at journeyswithmax.com
Read more advice at autism.org.uk/ holidays
Competition
Enter our extraordinary 60th anniversary art competition Calling all aspiring autistic artists! We’re celebrating our 60th birthday in style with a new art competition. Send us your 60th-themed art or photography − the more extraordinary the better − and your work could be featured in Your Autism magazine or the Spectrum magazine. Our theme is... 60 years of the National Autistic Society. It’s been an extraordinary 60 years, and we want to make the next 60 count. We’re looking for art and photography that illustrates (or takes a snapshot of) how far our charity and attitudes towards autistic people have come over the past 60 years, and what things might look like in the future for autistic and neurodiverse people – whether it’s 60 days from now, 60 years, or even 600 years. We invite you to get as creative as you like!
Need inspiration?
Travel back in time: Take a look at our timeline to see how far we’ve come, meet some of our autism heroes, and hear extraordinary stories – including the tale of the man who wore two wristwatches. Visit autism.org.uk/timeline Take a trip to the Spectrum online art gallery: Visit the Spectrum magazine’s online art gallery, and get inspired by fellow autistic artists. autism.org.uk/thespectrum 26 Your Autism
How do I submit artwork?
You can submit artwork by email or post. Please include your entry form with it. You can download the form at: autism.org.uk/artcompetition Email your artwork to: artcompetition@nas.org.uk Post your artwork to: 60th anniversary art competition, National Autistic Society, 393 City Road, London, EC1V 1NG. The deadline for entries is 14 August 2022. Our judges will shortlist the top three and the winner will be decided by an online poll. The top entries will be displayed in an online gallery on our website. Artwork can be paint, pencil, ink, or photography. The maximum size for an artwork is A2. This means we can’t accept sculptures, statues, or multimedia (but we can accept photographs of these). The winning children’s entry will be published in the November issue of Your Autism magazine. The winning adult entry will be published in the October issue of the Spectrum magazine. Good luck!
Campaigning
Why inclusivity in parks matters Our member Julie Huckins explains why local parks are so vital to her 12-year-old son Evan, and how they need to be more inclusive for autistic young people. We also look at some recent campaigns for autism-friendly parks My beautiful son, Evan, received his autism diagnosis aged two years and five months. Although autism has severely affected his ability to talk, his ability to interact with the world around him is his greatest strength. He loves swimming, horse riding and the great outdoors. Evan needs one-to-one supervision at all times to keep him safe and to access the opportunities he rightly deserves. Evan’s love for the outdoors never wavers. In particular, he enjoys spending time at our local parks and playgrounds. He loves to jump, spin, rock and swing in a safe space, which is vital for him to regulate, have fun, and share time as a family. Like many families, a trip to the dentist or doctor can be a very intrusive experience for our children. Preparation is really important, and the park plays a vital role in this. A trip to the park beforehand helps Evan to feel calm and focused at his appointment. However, 28 Your Autism
Campaigning
the older Evan gets and the more he grows, it becomes increasingly harder to provide those opportunities in the park. We visit lots of parks in our area, and the signs state they are disabled-friendly. That is true in the sense of flat paths and wide gates. However, the equipment (the main attraction) is often inaccessible. The bead board, noughts and crosses cubes and mirrors are at best knee height. This is very tricky if you have a child who finds balance and core strength challenging, and impossible to access if you are a wheelchair user. There is a lack of back-seated swings. For a child with balance issues, low core strength and/or coordination challenges, a standard swing would not be right. Only recently has Evan been able to swing independently on a standard swing. But, for a few years, there was a gap where a standard swing was too challenging and unsafe, as he was too big for the baby swings. I reflected a lot on how uninclusive parks were and how they were (unintentionally) biased towards ‘typical’ development. Which provoked the question... how are parks disabled-friendly if you can’t access the allimportant equipment?
For a child with balance issues, low core strength or coordination challenges, a standard swing would not be right
I decided to write to my local councillor, who assured me he would look into this. A year later I had heard nothing. At the same time, I contacted my local paper who said they would get back to me, which never happened. So I contacted my local MP who was keen to help. She explained she would write to the town council and would be in touch upon their
Play equipment is often the wrong height for older children
Summer 2022 29
Campaigning
response. She asked, in particular, which parks were not accessible. I explained the difficulties that a couple of the parks presented. But I felt the need to highlight that this was about an inclusive way of thinking to ensure all parks are accessible for differing abilities. Accessible play equipment shouldn’t feel like a privilege, but a necessity. My son’s generation who play in the parks today will be the same people who grow up to care, support, advocate and educate him. How can we interact, have fun and grow together if the environments are not inclusive to all? Some parks are better than others, but there is so much more to be thought about when
planning what equipment goes into a park. It doesn’t need to be bespoke for each child, but inclusive for autistic children, young people and those with physical and learning disabilities. The signs stating the parks are intended for 12 years and under are totally irrelevant to lots of families whose children are autistic and have learning disabilities. There needs to be a better and more inclusive way of thinking. I would encourage families, friends and relatives to take a look at their local parks and assess how inclusive they are. If they’re not, think about getting in touch with your local council or MP so we can further this on a national scale.
Park protests Lots of families have been calling for improvements to parks Dan Harris from Peterborough (pictured right) worked with the city council to make his local park more autism-friendly. He did so on behalf of his eight-yearold son, Josh, who is autistic and non-verbal. A new communication board has now been installed at Longthorpe Village Park. It has images and symbols, which will allow children who are non-verbal to communicate how they are feeling and what they want to do. Karen Devine-Kennedy, a Paisley councillor with an autistic son, campaigned for communication boards to be installed in Renfrewshire’s parks. Karen, whose 15-year-old son Callum used the boards when he was younger, said having them at parks would help carers and parents massively. Karen told the Daily Record: “Everybody thinks parks are accessible for all these days, but a lot of disabilities are not visible. The Government has given councils money to do up parks and I would like to see this being included in plans so they are more inclusive. These boards help autistic children express their feelings. It’s also about normalising autism. Everyone knows someone who is autistic, and I think the more people are curious and see people using the boards, the more understanding there will be.”
30 Your Autism
Campaigners calling for a dedicated play park for disabled adults in Bristol received cross-party council support. More than 53,500 people signed a petition last November started by Michele Morrice, who cares for her son Declan, 28. She said disabled adults were met with verbal abuse and complaints when using play areas in Bristol’s parks. Ms Morrice told the BBC: “Within Bristol, we know of many environments for disabled children. But when you are a young person who becomes an adult, your options are extremely limited. Many carers stay at home within the same four walls due to limited access to safe places to visit. There are hundreds of people trapped in their homes, often deteriorating, as the world is not designed for them.”
Play today for your chance to win up to £25,000 each week. Each entry is just £1 Join online now: autism.org/lottery Or call our lottery hotline: 0870 055 2291
Join now and help change the lives of over 700,000 autistic people and their families across the UK. The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
Readers to the rescue!
Post your problems or answers on Facebook at the National Autistic Society members’ group or email YourAutismMag@nas.org.uk
Do you have a problem our readers can solve? Get in touch and benefit from the experience of your fellow members
How can I find an autism-friendly dentist in my area and make visiting the dentist easier for my child? Anonymous
For extensive I spoke to parents and information and teachers at the special needs guidance about school my son attended, and autism, visit I had to talk to several dentists until our website: I found one willing to work with me. have a bad experience, it will be so autism.org.uk Use photographs and talk to your child much more difficult. My son is 35 now, about the process. Work with your dentist to and we still go through similar processes. allow you and your child to sit in the waiting He does cooperate with the dentist, and their room, and then leave again, to get used to the relationship has developed over the years. environment. Do this several times. Allow your child to Paul Fraser go into the surgery and watch while you are having Thank you for your great advice, Paul. You win a copy of How your own dental work done. Work with your dentist to to raise a happy autistic child by Jessie Hewitson. explain about ‘waiting time’. Our son has a meltdown if he’s waiting longer than a few minutes. Depending upon your child’s sensitivities, consider playing music to help keep them calm while being My daughter is 13 and gets very anxious treated. Ask the dentist initially to just quickly look in with dental procedures. A few years ago, your child’s mouth without doing any work. Practise at I explained to her paediatrician that she home by putting a toothbrush in your child’s mouth. would not engage with the dentist. The paediatrician Anything you can do to expose your child to that referred her to the special care dental clinic in our area experience in a safe environment will help. through the NHS. My daughter went from being terrified There have been times when our son will just not of the dentist to actually sitting in the dentist’s chair! It’s open his mouth, and it is important to leave it. If they made such a difference for her. Emily Sitch
A
Help me next!
How can you negotiate the benefits system on behalf of your autistic adult child? My son has burnout and refuses to engage with the process. Anonymous 32 Your YourAutism Autism
Send us your solutions Send us your solutions for a chance to win a copy of The autism and neurodiversity self advocacy handbook – Developing the skills to determine your own future by Barb Cook and Yenn Purkis.
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.
iStock .com / mediaphotos
Q A
Advice
Fliss Stephenson, Mental Health Policy Lead at the National Autistic Society, explains the type of adjustments you can ask for when having therapy or using mental health services Autism is not a mental health condition, but many autistic adults and children experience poor mental health. If a therapist can make changes (also known as ‘reasonable adjustments’) to the way therapy or a mental health service is delivered, it can make a huge difference to your experience.
autistic adults, here are some of the changes that people have found helped them:
What are reasonable adjustments?
Information before therapy starts – Some people found that being told who their therapist was, what would be expected of them, and pictures of the waiting and therapy room helped them to prepare for their first session and lowered their anxiety. This could be provided in a pre-appointment letter or email.
Autistic people are entitled to reasonable adjustments under the Equality Act 2010. The NHS and other services have to make sure that disabled people can use the same services as non-disabled people. To do so, they might need to make some changes to how they deliver their service to suit someone’s needs. All services have a duty to consider what they can do to make their services accessible to everyone using them. We know from our research, however, that in many services staff do not have enough knowledge of autism to understand what changes they might need to make. So, it can help to think about what might help you and ask for changes yourself. You can ask for the adjustments at any point, not just when you first get referred to a service.
What reasonable adjustments can I ask for?
Based on our mental health survey of 1,500 34 Your Autism
Reasonable adjustments before therapy starts Contact with the service – If speaking on the phone is difficult, you could ask if appointments could be arranged over text or email.
Waiting rooms – Some services are able to make their waiting rooms better sensory environments by minimising clutter and reducing bright lighting. Alternatively, you could ask if you could wait outside or in your car and be contacted when your therapist is ready to see you. Number and length of sessions – You could ask to change the number and length of sessions you are offered. You might need more time to process what your therapist is saying or to build initial trust. Or you might find it easier if sessions are shorter, so you don’t feel overloaded.
iStock .com / SDI Productions
How to… ask for reasonable adjustments to mental health services
Advice
Reasonable adjustments to your therapy sessions Bringing someone with you – For some people, having a chosen person to attend sessions with them makes a big difference. They might help you to express how you are feeling. Or you could do the majority of the session alone, but have your chosen person come in at the end to listen to any homework the therapist sets. The therapy room – Could adjustments to the room make it easier for you to engage in sessions? Could changes to the lighting be made? Is there a way of minimising outside noise? You could bring something from home into the room, such as a cushion, to make you feel more comfortable.
record sessions and play them back later is really useful. Session structure – Can the session follow an agenda? This can be agreed together and used throughout sessions to maintain focus. Having the same agenda every session helps some people know what to expect. These are just some examples autistic people have shared with us. Having ongoing conversations with your therapist about what might work best for you is a really good way to make sure everything in the sessions is as helpful as it can be.
For video calls – Could your therapist use a neutral background? Would you find it easier to turn your camera off?
Read more about reasonable adjustments to mental health services at autism.org.uk/ therapyadjustments and use our template letter to ask for adjustments.
Communication support – Does it help you when people write things down? Does it help when you write things down? Could they give you some visual support, too, such as drawings? For some people, being able to
Read our Good practice guide for professionals delivering talking therapies for autistic adults and children at bit.ly/therapy-guide. You could also tell your therapist about this guide.
Summer 2022 35
Exceptional Schools for Young People with Autism
Donating in memory of a loved one is an incredible way to remember them Your gift and generosity will help make a difference to the lives of autistic people and their families across the UK. To set up an online Tribute Fund, please visit: www.autism.org.uk/inmemory
To request donation envelopes for seats, tables or to include in order of service: 0808 800 1050
supportercare@nas.org.uk
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)
Alderwasley Hall School & Sixth Form, Derbyshire Aran Hall School, Dolgellau Bladon House School, Staffordshire Maple View School, Derby Pegasus School, Derbyshire Rowden House School, Herefordshire
SENADgroup Senadgroup.com Tel: 01332 378840
Advice
Moving from school to college Robert Leake, our Transition Support Coordinator for England, explains how to make the move from school to college as smooth as possible For many autistic young people, the process of leaving school is daunting. Planning the shift from secondary school onwards will involve meeting a lot of new people, visiting a lot of new places and, in general, making a lot of new and important choices for the future. For a positive transition, it’s important to start planning early.
A person-centred approach
When planning for a transition from school into further education, such as college, it’s vital to keep focus on the young person. It can be easy to lose sight of young people’s wishes during the complicated, and often stress-filled, move into new environments and structures. However, these transitional steps should always be constructed with the young person in mind. Young autistic people need to be directly involved in this process to keep it focused on their wants and wishes. This can be challenging for some if they find it a struggle to communicate their thoughts, feelings and views effectively. Extra focus should be given if the young person requires help and guidance with what’s available to them, what elements of further 38 Your Autism
education are important to them, and why participation will, ultimately, benefit them in the future. This latter point may not always be obvious to someone who is unnerved by the stresses of new people, places and procedures. To ensure transition planning is person-centred, young people should be invited to attend any meetings about their transition. All necessary information is then gathered at the meetings. This may mean the meeting coordinators need to think creatively if the young person struggles to communicate their interests. Inventive approaches to written communication, or visual aids and video, can be helpful. Coordinators should take responsibility to ensure that the young person’s wants and interests are recognised, acknowledged, recorded, and shared in a meaningful way.
All those within the young person’s support network, and who know them best, should have access to the transition process wherever possible. It’s important that each transition meeting addresses both current and future needs. A plan is then created, focusing on tangible next steps that identify meaningful and future actions.
Arranging support at college
When developing a solid transition plan around the young person, it is important to remember that colleges can offer and arrange support and reasonable adjustments for autistic students. Colleges offer a range of courses, including AS/A Levels (England, Wales, Northern Ireland), Highers/Advanced Highers (Scotland), vocational courses, diplomas, foundation skills, and life skills. As well as choosing the right level of study, it’s important to think
Meeting coordinators may need to think creatively if the young person struggles to communicate their interests
about other elements, such as the location, social opportunities, environment and support. Use the time before the young person starts the course to liaise and engage with the disability adviser or Special Educational Needs (SEN: England and Northern Ireland) Additional Learning Needs (ALN: Wales) or Additional Support Needs (ASN: Scotland) teams within the college. The young person and their family can contact staff within these teams to ask what support will be on offer and to make it known that there will be someone who requires it. It can be important to take the lead on this, as colleges will not necessarily know about the young person’s needs, or make first contact on any extra support requirements without being asked to do so. There are certain questions that can be considered, to alleviate any anxious uncertainties that many will understandably feel during the transition process. For example, will the college be local, or will it be further away than the young person is used to when attending school? Following this, will there be affordable transport and is the young person comfortable using it? Perhaps the summer holidays can involve some trial runs to get used to the journey. College timetables can be less rigid than those at school, so it’s useful to work out in advance how this extra time will be managed. Creating some detailed calendars can help to organise this and to soften the unknown elements that may bring on anxiety. College can be a socially active environment, so making new friends and being around new people may make some anxious. However,
iStock.com/JohnnyGreig
Advice
colleges often have a larger number of students with diverse interests, so fitting in may not be as difficult as anticipated. Colleges have clubs and societies that students can join, and offer social opportunities in a structured way. Speaking with the college in advance about where students can focus their interests with others is a good idea.
Additional support
Sensory differences and support needs also require consideration. Families should look into the accommodation, eating facilities, lecture rooms and workshops. Will the young person feel comfortable there, and is there a support plan in place if they ever feel uncomfortable? Colleges can arrange additional support and adjustments for
autistic students, such as specialist rooms, note-takers, mentors and study skills support. Extra time in exams, word processors and a scribe can all be applied for as reasonable adjustments through the disability adviser or SEN/ALN/ ASN support team. These practical considerations around time management, location, transport and social life should be raised with the college before starting a course with them. In summary, it’s important to consider the interests and possible anxieties that young autistic people might face upon entering further education. Talking to staff about the needs of the young person and how the college can offer support will be a positive step. The young person can be prepared for this new, and hopefully positive, transition into adulthood.
For further advice and support with the transition process, visit autism.org.uk/transitions You can also contact our Transition Support Helpline at autism.org.uk/transition-support-service Summer 2022 39
Notebook
Everything you need to read, do or see
What are you reading or watching?
Send in your recommendations for autismrelated books, TV shows, films, and podcasts to YourAutismMag@nas.org.uk, and we may feature you on these pages.
Minority musings podcast
VERDICT: The perfect podcast for members of a minority group, or anyone a little bit ‘different’
Grace Liu, autistic artist and author, chats to guests from various minorities in this thoughtful new podcast. Minority musings kicks off with a fantastic first episode featuring Clara Godwin-Suttie, a freelance writer. Grace and Clara discuss their experiences as gay and bisexual women – from ‘coming out’ stories to media representation. Whether you are part of an ethnic minority, neurodiverse or disabled, part of the LGBTQ+ community, or ‘different’ in any way, this is the podcast for you! Hermione Cameron, Copywriter at the National Autistic Society Find Minority musings at anchor.fm/grace-liu10
Giveaway
We have a copy of A parent’s guide to autism diagnosis to give away to a member. For your chance to win, please email your name and postal address to YourAutismMag@nas.org.uk by 20 July, quoting ‘Diagnosis giveaway’ in the subject line. The winner will be announced in the next issue. The winner of last edition’s giveaway for a copy of Safeguarding autistic girls is Dawn Reid. The winner of Autism and masking is Rosalind Little and the winner of From hurt to hope: Stories of mental health, mental illness and being autistic is Liu Menglu. Congratulations to all our winners.
40 Your Autism
A parent’s guide to autism diagnosis: What to expect and how to support your child
AUTHOR: Dr Sophia Mooncey and Adele Devine PUBLISHER: Jessica Kingsley Publishers PRICE: £14.99 VERDICT: The ultimate diagnosis guide Autism diagnosis can be an overwhelming time for many families. This is an accessible guide for parents, answering the questions you may have before, during and after diagnosis. This book will support parents from the moment somebody mentions autism, through the diagnosis process and beyond. It provides reliable advice on every stage, with guidance on what to do during the long wait for assessment and diagnosis. Working from a pro-neurodiversity perspective, it encourages parents to celebrate each child’s unique personality and strengths. I particularly liked the many case studies and quotes from families, plus all the practical advice on anxieties, communication and starting school. Suzanne Westbury, Editor of Your Autism magazine
Notebook
Diffability podcast
challenges they face. Special guests include Debbie Bright from TOWIE, and awardwinning author Sally King. It’s all done with a healthy dose of realism and humour. If you’re in a similar situation, this podcast will remind you that you’re not alone. Listen at thedadsnet.com/diffability Suzanne Westbury, Editor of Your Autism magazine
VERDICT: Lots of realistic advice and experiences to identify with Paul and Michael Atwal-Brice have two sets of twins. The eldest, Lucas and Levi, 16, are autistic and have epilepsy. This new podcast is for all parents who are raising children with disabilities. In each episode, Paul and Michael talk about their lives and the
Our six favourite… low-cost sensory toys for summer
1
Dimpl
Built into the sturdy plastic frame are five vibrant silicone bubbles in varying sizes and colours. Push them all the way in to pop them through to the other side. Ideal for long journeys. £10.99 from happypuzzle.co.uk
sculpt or mould it into a shape, but is also soft and free flowing when broken up. Moulding sand into the dinosaur shapes is good for developing fine motor skills, too. £6.50 from multisensoryworld.co.uk
3
Six-pack of sensory fidget stretchy string
The stretchy string fidget toy is lots of fun – twirl, squeeze or tie it in knots. £4.49 from cheap disabilityaids.co.uk
2
Dinosaur kinetic sand
Kinetic sand is great for tactile sensory seekers. It has the characteristics of wet sand, where you
sensory input and is a good calming tool because of its repetitive motion. £2.50 from multi-sensoryworld.co.uk
4
Water snakes
Sealife and dinosaurthemed, you squeeze the liquid-filled tube and it will slide up or down in your hand. It’s ideal for anyone seeking
6
Out and about water wheel set with accessories
If your child enjoys water play, this water wheel set is ideal. They can pour water into the top using the watering can, before it trickles down through the waterwheel. £7.50 from The Entertainer at thetoyshop.com
5
LED crystal lightup bounce ball (three pack)
This great crystal-shaped ball lights up upon impact as it is thrown around. Its special shape catches interest and provides tactile and visual fun. £6.62 from sensorytoy warehouse.com
Do you have an idea for our six favourites section? Email us at: YourAutismMag@nas.org.uk
Summer 2022 41
Snapshot
I’m a… Eurovision Song Contest superfan Jethro Offemaria has been a Eurovision Song Contest fan for 20 years. He shares with us the joy it brings him Born in the Philippines in 1990, I came to the UK in 2000. Shortly after, I became a fan of the world’s largest music event, the Eurovision Song Contest. My parents and grandparents raised me in the Philippines, but I had no speech until I spoke my first word at the age of three. In 1993, I was sent to a mainstream nursery school, but I didn’t cope well. I was different from other toddlers and didn’t make friends at all. My parents referred me to paediatricians, who diagnosed me with Asperger syndrome. When I was 12, and living in the UK, I flicked through the TV channels one day and started watching Eurovision. I saw the UK’s 2002 song, Come back by Jessica Garlick, and I was intrigued. A year later, I watched the news about Jemini representing the UK in Riga, Latvia, with high hopes of winning the contest. That year, I watched Eurovision in full, and the winner was Turkey with 167 points. After the 2004 Eurovision Song Contest in Istanbul, I downloaded all the entries since it all began in 1956. That was when Swiss singer Lys Assia won the first Eurovision Song Contest in Lugano, Switzerland. In 2010, I went to Norway to experience my first live Eurovision Song Contest. I met 42 Your Autism
BBC Eurovision commentator Graham Norton and 15 finalists, including the UK’s entrant Josh Dubovie, and I enjoyed watching it. Now I am a massive fan, and I’ve been following it every single year. It is part of my life watching it every May. My top five Eurovision winners are: 1. Nocturne by Secret Garden – Norway 1995 2. Satellite by Lena – Germany 2010 3. Insieme: 1992 by Toto Cutugno – Italy 1990 4. Zitti e buoni by Måneskin – Italy 2021 5. Only teardrops by Emmelie de Forest – Denmark 2013 In the future, I hope to attend Eurovision final shows with other fans and see all the acts perform live.
Would you like to share your achievements or passion here? Email us at YourAutismMag@nas.org.uk
We have a growing need for Foster Parents to care for children with SEN and complex needs.
As a parent or Carer of a child with Autism, you already have the skills to Foster young people with similar needs. You will receive 24/7 professional support; competitive Fostering allowances; and ongoing Therapeutic Parenting training and advice.
Could your family welcome a child living with complex needs? Call: 0800 644 6230
Visit: www.bythebridge.co.uk/care