YOUR Winter 2019
Double act Comic Matt Richardson and his brother Alex
Surviving the festive season Your tips and advice
The dating game Strategies to help
Plus
Craig Revel Horwood on Strictly’s first relaxed show
YOUR Winter 2019
Facing Christmas
16
Grandchildren
32
EDITOR Suzanne Westbury YourAutismMag@nas.org.uk Contributors Hermione Cameron, Greg Cranness, Tracey Lattimore, Louise Parfitt 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 Winter Vol 53, No 4 National Autistic Society ISSN 2055-0413 The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a website does not necessarily imply that our charity endorses or supports the group or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.
Craig on Strictly’s relaxed show
Contents
10
What’s new?
04
Sense and sensitivity
26
Craig Revel Horwood
10
Readers to the rescue
30
My diagnosis
15
Helping your autistic grandchild
32
12 days of Christmas
16
Why dating can be difficult
36
It’s not enough
20
Meet the team
41
24
Notebook
43
I’m a... powerlifter
46
A round-up of the latest news
on autism-friendly shows
Richard Turner explains
Your festive stories and tips
What’s next for the Autism Act?
“There is no buddy like a brother”
Meet our ambassadors, Matt and Alex Richardson
Sensory issues around clothing
Encouraging teeth brushing
Support worker Daniel Skews
Things to read, do and see
82% of autistic adults said getting mental health support took too long
20
Winter 2019 3
What’s new?
Get in touch!
Our round-up of the latest news and views
Autism Hour highlights This year’s Autism Hour campaign week in October was the biggest ever, with more than 14,500 shops across the UK running an enormous 35,800 Autism Hours over the week. This is a tremendous achievement, and we hope that this opportunity will mean thousands of businesses take further autism-friendly steps. Thank you to all our members who encouraged their local shops to take part. We’ve picked some of our favourite moments that show how easy it is to create a world that works for autistic people.
Alan Gardner, the Autistic Gardener (right), at The Entertainer in Birmingham
Lloyds receives Autism Friendly Award
Lloyds Banking Group has received our Autism Friendly Award, marking its commitment to become the UK’s first autismfriendly bank. Our charity has been working closely with the group, which includes Lloyds Bank, Halifax and Bank of Scotland, to improve the customer experience for autistic customers and their families in more than 1,600 branches. This followed the group’s participation in Autism Hour 2018. To support Lloyds in achieving the award, we carried out an extensive review of its branches
4 Your Autism
and telephone customer service information. This included reviewing branch layouts to make sure they work for autistic people, ensuring website information is clear and concise, and educating customer-facing staff to understand their autistic customers’ needs better.
Leo Capella, our autistic Autism Access Specialist, said: “My local branch has been redesigned since we started working with them. It is well set out, the sensory environment – with its low lighting – is relaxing to be in, staff are always friendly, and I know they’ve got at least a basic understanding of autism and the challenges autistic people can face on the high street. These small but meaningful changes will help make the banking experience better for myself and the thousands of autistic people like me across the UK.”
News
Derrick Gough and his son Finn browse at CeX in Harrow, London
Christmas cards out now Arsenal, Tottenham and West Ham held Autism Hours in their club shops
Dame Cheryl Gillan MP, Chair of the All-Party Parliamentary Group on Autism, in Amersham
We ran our annual competition to find new, unique designs for our Christmas card range, which we put to a vote on social media. The adult winner was MelanieRose’s ‘Christmas Joy’, while Dacian won the children’s section with his very cute Christmas reindeer. Cards are on sale until 7 December, so get yours now! You can buy them at www.autism.org.uk/ christmascards
Tell the CQC The Scottish Parliament took part by dimming lights and reducing noise, helping to raise awareness of autism in the political arena
Coming up
In our next issue, we’ll be putting your questions to our new Chief Executive, Caroline Stevens. Caroline was previously Chief Executive of the KIDS charity, and has spent her career in the charity and health sectors. She has an autistic adult son. Please send your questions to YourAutismMag@nas. org.uk by 3 January 2020. Love comics? We’ll be featuring fans of the Beano in the next issue, too. Email us to take part!
The Care Quality Commission (CQC) is encouraging people to feed back about the health and social care they are receiving. Visit www.cqc.org.uk for more details on how and why to #DeclareYourCare.
Members’ Facebook group
Do you use Facebook? If so, you can join our newly launched members-only Facebook group. Simply search for ‘National Autistic Society members’ and ask to join, at which point you’ll be asked to verify a few details related to your membership. The group has been set up for members to share advice and information about autism. Winter 2019 5
News
Our new advice service In early 2020, we will launch our new Autism Inpatient Mental Health Advice and Casework service. This will provide free information and support to families whose loved one is – or is at risk of – being detained in a mental health hospital. It will also offer email and telephone support to help families secure the care their loved ones need in their communities. In August, we teamed up with autistic campaigner Alexis Quinn to hand in a petition with 217,828 signatures to the Government at 10 Downing Street. Our joint petition calls on the Government to
Delivering our petition to 10 Downing Street
end the scandal of autistic people being inappropriately detained in mental health hospitals. Thank you to everyone who signed it. Despite repeated promises from different governments, the number of autistic people in mental health hospitals has continued to rise. And we continue to hear disturbing stories of people being detained for long periods of time, miles away from their family, and even restrained, overmedicated
and kept in isolation. We will continue to campaign, but we know people need help now. That’s why, with the support of families that have been campaigning on this issue, we are launching our new advice and casework service. If you need support with these issues now, call our helpline on 0808 800 4104. Our advisers can answer your questions while we establish our full casework service, ready to launch in 2020.
Getting the right support The Government has announced a review of support for pupils with special educational needs and disabilities (SEND). The announcement followed a report from the National Audit Office that showed while some children with SEND are receiving highquality support, many others are not getting the help they should. The report found that local authorities are coming under growing financial pressure as the demand for supporting school pupils with the greatest needs rises. The NAO concludes that the system for supporting pupils with SEND is not financially
6 Your Autism
sustainable. Many local authorities are failing to live within their high-needs budgets and meet the demand for support. Tim Nicholls, our Head of Policy, said: “We hear awful stories every day of autistic children who are being held back from getting the education they deserve because schools don’t understand or can’t meet their needs. This can be devastating for them and their families, and means they lose all faith in the system. This detailed NAO report shows the extent of this unacceptable situation.” Read the full findings at www.nao.org.uk
Diary dates
What to do and where to go
27-28 February 2020
Autism Professionals Conference, Birmingham
26 November 2019
Pathological Demand Avoidance Conference, Birmingham
Hear from experts at our annual conference in February 2020. Mental health and wellbeing, diagnosis, identity, communication, happiness and quality of life are the key themes of this year’s event. www.autism.org.uk/conferences
This conference will provide professionals and parents with clearer understanding of PDA, plus essential strategies for education, management and communication. www.autism. org.uk/conferences
The Lion King
Stars Shine
5 February 2020
Strictly Come Dancing – The Live Tour
Nottingham Motorpoint Arena See pages 10-13 for details of this relaxed matinee performance. www.motorpoint arenanottingham.com
group of 30, you’ll cycle coast to coast through beautiful varied landscapes. The registration fee is £75 and sponsorship is £750, which covers everything including accommodation and meals. The rest of your money goes to support the work we do. www.autism.org. uk/way-of-the-roses
31 May 2020, 1.30pm
4 December 2019 St Clement Danes Church, Strand, London Join us for our annual Christmas concert in this beautiful central London church. With carols from the fantastic EC4 Music Choir, and celebrity readers, you’re in for a truly festive evening. www.autism.org.uk/starsshine
Way of the Roses
30 March–5 April 2020
World Autism Awareness Week and Night Walks on 4 April 2020
We are gathering next year’s team for Spectrum Night Walks 2020 − will you join us? Take to the streets to help us raise awareness of autism next World Autism Awareness Week. But hurry − our discounted ‘early bird’ registration offer ends on 30 November 2019. Find out more at www.autism.org. uk/spectrumnightwalks
1-3 May 2020
Way of the Roses
We’re cycling 170 miles from Morecambe to Bridlington next May, and will be stopping by our enterprise café in Whalley Abbey – why not join in? With a small
The Lyceum Theatre, London “At The Lion King, we have performed six relaxed performances, and I speak for the entire cast when I say they are our favourite shows of the year. The energy abounding from the audience is extraordinary.” George Asprey plays Scar in the London production of Disney’s The Lion King. Book for May’s relaxed performance at www.autism.org.uk/shows
27 September 2020
BMW Berlin Marathon
We’re taking part in the BMW Berlin Marathon for the second year running. It’s one of the six major world marathons, and the flat course is renowned for setting world-record times. Join Team Autism and secure your charity place today. www.autism. org.uk/berlinmarathon Winter 2019 9
Interview
Q. We’re working with an increasing number of shows to put on autism-friendly performances. Why is it so important that the biggest names and events open themselves up to this?
I think autism-friendly shows are so important to be completely and fully inclusive for the audience, to be able to satisfy the needs of a crosssection of the community. And it’s crucial that we can help people who generally wouldn’t come and see a show because of loud noises, firework displays and all of that stuff that might scare or upset them. It’s to give them an opportunity to see a show that they can feel comfortable watching.
Q. We know that a lot of autistic people and their families feel isolated. It can be really difficult for them to go out shopping, see a show…
“Autism-friendly shows are so important” As Strictly Come Dancing – The Live Tour 2020 puts on its first relaxed performance, we caught up with Strictly judge Craig Revel Horwood 10 Your Autism
…because of loud noises, strobe lighting and all of that. This gives autistic people a date to see and enjoy a show in the same way as everyone else, and that’s really important. I do that with all my theatre shows and it works really well.
Q. What can the audience look forward to seeing at the Strictly Live Tour?
It’s far more glittery than you can possibly imagine on the TV – when you see the costumes in real life, it’s an awe-inspiring experience. It’s way more sparkly than the TV gives it credit for! The format is similar to the TV shows. We judge the show as a competition and the audience gets to vote by text messaging.
Interview
with as a hobby. Then it became my driving ambition to be a professional.
Q. How did you make the move to choreography?
I was dancing next to 16-year-olds, and I realised I was becoming the grandfather of dancers at 30! I wanted to do something to do with dance because it’s my passion. So I thought I’d try my hand at choreography, and that led to directing as well.
Q. What do you enjoy most? Directing, choreography or performing?
I love directing and choreographing. It excites me, that’s my passion – I love the theatre.
Q. What are you most excited about on this year’s TV series of Strictly?
I think the line-up is fantastic. Having Alex Scott, the first female footballer on the show, is pretty cool. It’s a way of introducing new celebrities to those who may not know them. So if you’re not somebody who follows celebrities online, you can get to know internet stars as well, like Saffron Barker.
Q. And you’ve got Motsi Mabuse as the new judge…
She’s fantastic. She’s had nine years’ experience on Strictly in Germany. She’s very warm, quite tough as well, which I think is good. She’s one of the tough-love specialists. She says what she feels and she also encourages in a warming and sort of lovely way, which I think is needed.
Q. Who’s impressed you so far? Karim Zeroual is really good and he’s had experience as he was in The Lion King. He must have fantastic rhythm to have been in that show, so he’s no stranger to performing. I think sports people can have trouble with the performance side of it.
Q. What got you hooked on dancing?
I think just the freedom that you experience – it was something that I was good at. Dancing gave me confidence and I was encouraged to do more of it, and I just loved it.
Q. So you knew you’d found your passion? Yes. Because I didn’t know what I wanted to do, and it was something I just fell in love
About the Strictly relaxed performance “We’re very excited that Strictly Come Dancing – The Live Tour 2020 will include a relaxed performance in Nottingham in association with our charity. It will be hosted by Strictly winner Stacey Dooley and judges Craig Revel Horwood, Bruno Tonioli and Shirley Ballas. Our Autism Friendly Award team has supported the show by training performers, crew and venue staff to help them understand autism and to support autistic people and their families throughout the show. It’s going to be fantastic!” Dan Cadey, Autism Friendly Development Manager Winter 2019 11
Big Annual Raffle 2019 Play our big annual raffle today for your chance to win £2,500! Each raffle ticket costs just £1 and, for every ticket you purchase, you’ll be making a difference to the lives of autistic people and their families.
Join Jane Asher for a Christmas sing-a-long Stars Shine for Autism carol concert Wednesday 4 December St Clement Danes Church, London Tickets £15 downstairs, £20 upstairs Buy online:
Good luck! Are you gambling more than you really want to? If you feel you have a problem with gambling, please visit the BeGambleAware website for help and advice at www.begambleaware.org or contact The National Gambling Helpline on 0808 802 0133 (lines open 8am to midnight).
11/10/2019 17:06
2nd prize
£500
3rd prize
£100 PLUS
30 more
prizes!
Visit www.autism.org.uk/raffle or call on 0808 800 1050 (Monday-Friday, 9am-5pm). Closing date is 27 November 2019.
www.autism.org.uk/starsshine
StarsShine quarter 86.5x107mm V3.indd 1
It’s easy to enter!
1st prize
£2,500
Artwork is Peaceful Waterfalls, painted by Kenny, karate enthusiast and autistic teenager
Interview
Q. Do you have a favourite show you’ve worked on?
I loved working on Sister Act with Alexandra Burke, I really found that uplifting. It was funny, a proper musical theatre comedy. And Sunset Boulevard was one of my favourites that I put on in the West End.
Q. Do you feel that strict instruction helped your own career when you were dancing?
Definitely. I had teachers who were really hard on me because I had wild arms as a dancer, and I had to learn how to control them. I had teachers that really got behind me, basically told me off all the time for my arms! They instilled a better level of artistry in me.
Q. What advice would you give to aspiring dancers among our readers?
Even if you get knocked back, always keep trying. If you have a passion for it, you’re going to do really well. Obviously, it’s hard work, so train, train, train. You’ve got to be fearless. If you love dancing, then you get up there and you dance.
Q. Some of our readers might be finding life difficult and be facing a lot of challenges. Pursuing a passion can really help. There’s room for everybody in dance – music is the thing that drives you. It’s a form of escapism as well, where you can forget everything in real life and where, suddenly, you’re enlightened and doing something you enjoy. Why not follow that as far as you can take it?
Falling in love with dance Lyric Denman, an avid ballroom dancer at our Robert Ogden School, got the chance to ask Craig some questions Aged nine, Lyric is learning ballroom dancing and takes part in competitions. He told us: “Before I started dancing, I never went out and stayed in the house all the time. Dancing lets me do things and makes me happy.”
Lyric: Why did you want to learn how to dance?
Craig: I was aged between 13 and 14 and I wanted to get fit. I didn’t like sport at school, I was more interested in playing the French horn and the trumpet. I really wanted to get fit because I was putting on weight and I decided to go to a jazz ballet class. Then I lost weight, became fit and fell in love with dance.
have to learn to follow, so I really enjoyed that experience.
Lyric: What’s your favourite dance?
Lyric: Why are you so strict on Strictly?
Craig: The Argentine Tango. It was one of the hardest, mind you, because it’s improvised. I learnt it in New Zealand of all places, and I went to lessons. My teacher was a man as well, so we swapped roles – some days I would lead and some days he would lead. You’d
Craig: Because I think it’s important to be honest with people so they improve and fix all the wrongs to make it right. Thanks to Lyric for his great questions and we wish him luck in his next competition!
Buy tickets
To get tickets for the Strictly Come Dancing Live Tour at the Nottingham Motorpoint Arena, 2pm on 5 February 2020, call the venue free on 0808 164 4616 or book online at www.motorpointarenanottingham.com
Winter 2019 13
My diagnosis
“My diagnosis came after I left a cult” Richard Turner writes about his difficulties spotting other people’s motives My autism diagnosis was a relief. For my whole life, I felt I was different, like life wouldn’t fall into place for me. I have spent my life in and out of counselling, trying to address the wrong issues. Now I realise that certain levels of anxiety are caused by being autistic and not because I have some deep wound that I need to address – even though there were plenty of those. One challenging thing for me has been that I have been used and exploited on many occasions, and not realised why it was happening. Understanding my autism has helped me spot this now, and the diagnosis has helped me see my vulnerabilities. Getting my diagnosis came after I left a cult, which I am aware is a bit of an ‘out there’ thing to say. I got involved in a group, which called itself a church, and they systemically groomed me and tried to
Read more
If you are worried someone is taking advantage of you, visit www.autism.org. uk/safeguarding for advice. Read more from Richard in The Spectrum magazine at www.autism.org.uk/ thespectrum
take control of my life. I was told I had to obey everything they said without question. It was only after I gave them hundreds of pounds and realised that they had broken up my relationship with my partner that I left.
Spotting motives Getting the diagnosis has helped me realise that I sometimes have challenges spotting people’s motives. I project my own honesty on to other people, thinking they are telling the truth and can’t tell when they’re using me. I get caught up in things and the blinkers go on, which is great in some areas, but puts me at risk in others. Part of my recovery from that experience was about asking who I was and how I got into that situation. Of course, everybody is susceptible to being manipulated but being autistic meant that I was more of a target for that brand of grooming. It’s all good now, though. I am just finishing a Master’s degree in the psychology of coercive control at the University of Salford. The psychological abuse I experienced shook my identity to its very core. But the autism diagnosis has meant that I have been able to solidify it. I know who I am and – even though I still feel like I don’t fit in – I feel happy with the label ‘autistic’ because it has helped me see how amazing it is that I have survived in life, what I’ve managed to achieve, and it’s helped me understand my own resilience. Winter 2019 15
Real life
“It’s the 12 months of Christmas for Lucie, but it needs to go as planned” Looking for some inspiration over the holiday season? Read our members’ Christmas stories and tips
Lucie with Santa Claus. Below, her sister Emilie
“One loves Christmas, one hates it”
I have two girls, aged 18 and 20, with an identical diagnosis of autism and learning difficulties. One loves Christmas and one hates it, but for the same reason: the desire for sameness. The reason for their differing experience seems to be their concept/ awareness of time and dates. Lucie (Christmas lover) is fascinated by dates and is always thinking ahead. Consequently, she is aware that in December we do lots of Christmas things and we do the same things every year – the same music, food, decorations, stories and activities. Emilie (Christmas hater) doesn’t 16 Your Autism
really notice the passing of days other than whether it’s a school or home day. She lives in the moment so, every Christmas, the different music, food and décor take her by surprise – a nasty one. The ‘present’ thing is also different, but the same. Emilie doesn’t like presents, because who would want lots of unsettling new things all at once? Lucie likes to get presents because that’s what happens at Christmas. She does, however, like the same number of items each year (a new calendar being top of the list) – no surprises, thank you! The girls’ memory and anxiety also affects their experience. As Emilie has got older, she remembers Christmas more clearly and therefore knows that it comes to an end. For the sanity of both girls and myself, Christmas runs from 1 December to 31 December only! At home, Christmas for Emilie is a decorated tree in the lounge (tolerated), a box of crackers on Christmas Day (loves the smell) and Christmas dinner (gravy dinners are the best). Being able to remember this has helped her manage her anxiety about it, at least at home. Lucie has the better memory and likes nothing better than re-living those memories on a regular basis. Consequently for her, life is the 12 months of Christmas, but this in itself creates anxiety because it needs to go as planned. Helen
Real life
“We open gifts over a few days”
Arran finds Christmas Day challenging
“I enjoy special moments with family”
At Christmas, the comfortable world around me – with its anchor points – is taken away and replaced with a world that feels like it’s been turned upside down. It’s Christmas Day that I find most challenging. I love seeing my wider family, but tend to struggle when there are lots of people in a confined space for long periods of time, with many conversations going on at once. I find it very hard to filter out the background noise, focus on what’s going on and contribute to the conversations that are taking place. This is made even worse by the fact that I’m often already on edge because of the pressure of my normal routine breaking. Since my diagnosis a few years ago, the festive season has become a lot easier. It taught me a lot about myself and why I’ve always struggled with Christmas. But, even more importantly, it’s helped my family to understand me and accept my ways of coping. Now, when it gets too much, everyone is happy for me to take a few minutes away from the celebrations. This means something like taking the dog for a walk or going for a walk with one of my grandchildren, where I can engage with them on a one-to-one basis. It’s special moments like this, with my family, that I appreciate most. Arran
We’ve known that Caleb was autistic from a very young age. He never played with toys, he just lined them up from big to small and small to big. And he liked stacking things. He wasn’t interested in the toys themselves. The stacking could cause issues when he was younger as he would stack things so high that they could fall on top of him, so we have a very plain environment to keep him safe. We always knew Christmas was going to be different for him. The thing about Christmas for parents is seeing the excitement on their child’s face, and it was disheartening because our family knew we wouldn’t experience that with Caleb. We hoped that he would be excited, but he cried. He was terrified of the gifts, of the unknown. So I took advice from the National Autistic Society website and now we stagger the opening of the gifts over a few days, and he’s been so much better. Selecting toys that were not noisy was also a challenge. As he’s got older, it’s been better. It helps that he gets fewer but larger presents, which makes life easier. Life is just about making adjustments to what suits him. It’s always been about his needs, and Christmas is just a part of that. Frances
Caleb with his family Winter 2019 17
Real life
“Too much variety caused overload”
My 26-year-old son Simon is autistic and non-verbal. He lives at a supported-living care home, but comes home for three days every Christmas. One year, we prepared the full works – turkey, sausages, bacon, gravy, roast potatoes, parsnips, sprouts, carrots, broccoli, bread sauce and stuffing, and gave him all that on a plate. He picked up his plate, walked across the room, and scraped it all into the bin! Then I read an article about Christmas with an autistic person, and one comment was that a big variety of food on a plate could cause sensory overload. So the next Christmas, we cooked all the same food, but put it out in separate serving dishes. We gave Simon an empty plate, then he chose what he wanted to eat and was happy! Sally
“I remind him that Christmas is coming” When I was growing up, Christmas was always a happy occasion in my family. I couldn’t wait to have those experiences with my son, Bowie. Of course, the first Christmas I didn’t know he was autistic, and babies don’t understand Christmas, so I made more of a big deal of it than he understood. The second Christmas, I thought he’d maybe start understanding but, when he showed no interest, I reasoned that he was still young.
Fay and her son Bowie
18 Your Autism
Simon and his family found a way to enjoy Christmas dinner
But, by the next Christmas, we knew he might be autistic. He started putting his fingers in his ears because he didn’t like the sound of the presents being unwrapped. He didn’t like surprises, and there was all this stuff wrapped up. He didn’t know what was underneath the wrapping, so he hid behind his hands while I unwrapped a present behind his back and then showed him what he’d got. This Christmas may be different, but it doesn’t take away from the fact that I still have to prepare him. I tell him at least a month in advance that Christmas is coming, and I remind him on a weekly basis. I try to get him involved with decorating, because he doesn’t cope well with change. My advice for families who don’t know what to buy their child for Christmas is to focus on things they are interested in, rather than popular toys. I now put together a sensory box for my son that includes things such as spiky fluffy balls and a feather duster, because he loves the feel of a feather on his skin. This box, filled with items from the pound store, will bring him so much pleasure because it’s satisfying his sensory needs. Fay
Read more
Read our Christmas tips and advice at: www.autism. org.uk/Christmas
Campaigning
It’s not enough We asked for your views on support for autistic adults and children in England. Our Policy and Public Affairs Manager, Anna Bailey-Bearfield, explores the results
It’s 10 years since Parliament passed the Autism Act – the first and only law dedicated to improving services and support for a specific group of disabled people. It was a landmark moment in the campaign to improve the lives of autistic adults in England. The Autism Act says that the government must produce a national autism strategy, and that local authorities must provide adult autism services. This followed the publication of our charity’s I Exist report in 2009, which highlighted a lack of support across the country.
Inquiry into the Autism Act
This year not only marks 10 years since the Autism Act was passed, but also the next milestone in the Government’s review of the national autism strategy: following our campaigning, for the first time the strategy will also include children and young people. So this year is an important opportunity to improve services and support for autistic 20 Your Autism
people and their families. This is why we’ve worked with the All-Party Parliamentary Group on Autism (APPGA) to understand what has and has not changed for autistic adults and their families in England. During our inquiry, we heard from more than 11,000 autistic people and family members in England, alongside a wide range of professionals and other autism organisations. We uncovered issues across support in health, social care, education, employment and justice. You can read our full report at www.autism.org.uk/not-enough
What’s happening now?
While the Autism Act is an important piece of legislation, the
What is the APPGA?
APPGA’s inquiry found that not enough has been done locally and nationally to make sure that it makes a difference to autistic people. Progress has been held up because there isn’t enough understanding of the Act’s duties on councils and the NHS, and of how to implement them. Our charity is also concerned that the lack of adequate support has been made worse because councils and health services don’t have enough funding to create and maintain vital diagnosis and support services. This is having devastating consequences on autistic people’s lives, and we’re seeing widespread isolation, mental health problems
The APPGA is a formal group of MPs and peers from across all political parties that campaigns in Parliament for greater awareness of autism and improved services for autistic people and their families.
Campaigning
and people falling into crisis. We’re calling on the Government to take action to make sure its new autism strategy leads to improved services and support for autistic people.
Not enough support
Before the Autism Act was passed, autistic adults were too often ignored. While the introduction of the Act (and the Care Act in 2014) should have improved the support available, autistic adults and families told us that too often they’re not able to get the support they need across their lives. The APPGA inquiry found that 71% of autistic adults said they don’t get the support they need. Almost half (46%) told us that, with more support, they would be more independent. But, without this support, too many are ending up lonely or isolated, unable to work and are developing avoidable mental health problems. Our previous APPGA inquiry on education in 2017 showed that 70% of parents had to wait more than six months for support for their autistic child, with half waiting longer than a year. In the new inquiry, we found this lack of support also affects young autistic people’s preparation for adulthood, with only a quarter (26%) saying their family was properly supported during transition. Councils report a gap of billions of pounds between the funds that are needed for adult social care services and the funding that’s actually available (Local Government Association, 2018). There is a similar crisis in funding for children’s care, and concerns over school funding. We heard
71% told us they are not getting the support they need, which could total as many as 327,000 autistic adults across England 82% of autistic adults said the process of getting support from mental health services took too long 46% of autistic adults told us that with more support, they would be more independent Fewer than a third (30%) had enough time to prepare for the transition to adulthood Winter 2019 21
Our survey findings Campaigning
from witnesses to the inquiry that this has resulted in a failure to develop autism-specific services in many areas. This means too many autistic children and adults are struggling until they can’t cope and reach crisis point.
Barriers to accessing physical and mental health care
The impact of the Autism Act: Just 38% of autistic adults and 25% of families told us they were aware of the Autism Act.
38%
25%
Just 8% of autistic adults and 5% of families told us that since the Autism Act came into force health and care services in their area have improved.
8%
5%
Just 24% of autistic adults and 26% of family members told our inquiry that they thought public understanding of autism had improved since the Autism Act was passed.
26%
24%
Unmet mental health and social care needs:
adult diagnosis services. the theand their mental health needs are told us theyBefore are not getting support they need, total overlooked. Act, only a handful of areas in which couldbeing as many as 71% England had adult diagnosis The inquiry found that there is not pathways – now nearly all do. But enough health care able to meet What needs to be done autistic adults across England. children and adults are still waiting autistic people’s needs, in part We believe that, when the autism 60 far too long for diagnoses. We because of poor understanding of strategy is reviewed, the 58 know a diagnosis is a autism among healthcare Government should: 50 that getting % autistic adults told us they need services. crucial milestone and long waits professionals. The APPGA survey ● establish and fund specialist % autistic adults told us they have access to. can40mean people struggle to get found just 22% of autistic adults teams in every area of England 38 the30right support. and 23% of families felt GPs have a to carry out diagnoses, provide Our inquiry also confirmed that good understanding of autism, with support and information 29 29 26 20 is still not enough mental there worse results for hospital doctors immediately after a diagnosis, 21 21 health support. While autism is not 20 and nurses. People’s difficulty in and provide training to staff in 16 10 12 6 other local services a mental health condition, many seeing the doctor or going to 4 9 autistic people develop hospital can impact their physical ● hold areas to account on their 5 avoidable 0 mental health problems because of health, meaning that serious diagnosis waiting times a lack of support. In the worst illnesses could be missed. by developing a new waiting cases, autistic people find One of the biggest successes of time standard the Autism Act was getting the vast themselves in crisis without ● make sure mental health services appropriate support, and may end majority of local areas to establish that understand and can support up in mental health hospitals. available 76% 82% autistic people are14% During the inquiry, we heard of the across England devastating impact this is having ● make autism training mandatory on autistic people and families. important professions like Not Enough campaign 76% of autistic adults told 82% of autistic across adults Only 14% of autistic people us they reached out for said the process of getting said there were enough Following the APPGA inquiry’s Some 76% of autistic adults said health and care staff, Jobcentre mental health support in support from mental health mental health services in their findings, our charity has theythehad sought mental healthservices took too Plus last fi ve years. long.and the police area to meet their needs. 5 launched its Not Enough support in the past five years and, ● create and fund a long-term, campaign, which demands when they did, 82% said getting properly resourced national NAS_APPGA_REPORT_11SEPT_FINAL2.indd 5 better support and services help took too long. Too often, they autism understanding campaign, 11/09/2019 for autistic people in England. are being told mental health aiming to shift the attitudes and We believe there is not problems are ‘due to their autism’, behaviour of millions of people. enough understanding, there are not enough services and, importantly, there’s not been You can support our campaign right now by enough progress for autistic contacting your MP and inviting them to our people. Find out how you event in Parliament on 13 November to hear can help our Not Enough more about our findings and how they can help. campaign at www.autism.org. Find out more by visiting our website www.autism. uk/not-enough org.uk/not-enough g
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22 Your Autism
09:48
Real life
“There is no buddy like a brother” Matt and Alex Richardson, ambassadors for the National Autistic Society, discuss family life, autism awareness and The Matt and Co Comedy Show
For Alex, his brother Matt and their family, autism has always been something to be proud of. From the moment the family suspected Alex might be autistic, after reading an article about autism, the mood was one of celebration, with the brothers’ mum recalling that Alex “was running around excitedly shouting: ‘I’m autistic!’” Since then, Matt and his parents have continued to encourage the younger sibling. “There were things I found difficult,” says Alex, “but both my mum and dad always celebrated what I could do, and helped me with the 24 Your Autism
things I found difficult. It was never talked about as a disability. My parents brought me up to believe I could achieve whatever I wanted if I worked hard.” Matt, a stand-up comedian and television presenter, considers his parents’ honest approach as one of the most positive things they did. “It was very openly talked about in the house,” says Matt. “It was never a secret or an unmentioned thing. It took all stigma away from autism and it was simply something Alex had, like red hair or glasses. No big deal, whatsoever.”
Real life
Keep on learning
Since August 2018, the brothers have been ambassadors for our charity, supporting our work to improve public understanding of autism. Throughout his time at school, Alex felt more needed to be done to educate people about autism. “Even now, I don’t think teachers have enough understanding of autism. They are given very little training in this area, and often believe autistic pupils are being difficult. I also think it’s important pupils are taught about autism, particularly in secondary school.” This is a view he’s maintained since choosing to pursue a career in television production. “Employers need to appreciate the individual needs of each autistic employee. We are not all the same, and things in everyday life can impact us in different ways. It would be great if employers could educate co-workers and offer a quiet area for people suffering from sensory overload.”
There wasn’t really any sibling rivalry when we were younger – I grew up wanting to be just like Matt
A brotherly bond
With Matt being seven years older, Alex has seen his brother as an inspiration as he’s grown up. “There wasn’t really any sibling rivalry when we were younger – I grew up wanting to be just like Matt. However, if you ask him, he will probably say I was very annoying and wouldn’t leave him alone! It’s because of Matt that my interest in television first started, as I was lucky enough to accompany him while he was filming The Xtra Factor. It gave me real insight into the industry and the opportunities behind the camera.” As they’ve grown older, the brothers have continued to enjoy spending time with each other, often attending festivals, music events and comedy gigs together. Alex has remained an avid fan of Matt’s comedy, most recently watching him perform at this summer’s Edinburgh Festival Fringe. “Matt often tells stories about our mum and dad during his gigs – they make me laugh the most.” Matt is currently busy organising The Matt and Co Comedy Show, which is returning in November for its second year. With last year’s
event raising nearly £17,000 for our charity, Matt is looking forward to another successful show. “It promises to have an amazing line-up of comics who have got more TV credits than I can list, as well as a couple of surprise guests,” he says. “Last year, we tried hard to have some autistic comics, but it was really tricky to find someone available. So this year, I’m really happy to say we have the amazing Bethany Black and Ashley Storrie. Bethany and Ashley are both autistic and speak about it on stage. Plus, we’ll have Cally Beaton, who has an autistic son, and who talks about autism, too. It’s always fantastic when comics talk about their experiences.” Have you got your tickets to The Matt and Co Comedy Show? If not, you can buy tickets today by visiting www.autism.org.uk/comedy Read more from Matt and Alex at www.autism.org.uk/digitalyam
Winter 2019 25
Touch sensitivity
Sense and sensitivity Finding comfortable clothes to wear can be a huge issue for people with sensory issues, as Tracey Lattimore discovers
Many autistic people have sensory difficulties, one of which is touch. Some might find that certain textures aggravate or even hurt their skin, while others enjoy the feeling of weighted objects. When it comes to clothing, labels can irritate, the texture of fleeces might not be quite right, materials are itchy and seams can cause discomfort. “I can’t wear anything ‘scratchy’, so that includes wools and tweeds – I even have to be careful with stiff linens,” says Mike, National Autistic Society member. “I tend to wear cotton clothes, such as shirts and trousers. My main exceptions are some of the suits sold by M&S, which are predominately made of a polyester material and are, therefore, smooth to the skin.”
Feeling restless
Not everyone has the same physical reaction to clothes and textures. Some experience a crawling sensation over their bodies, which can even extend to the mouth, hands and feet. It can be distracting at best, but at worst can make them feel so restless that they’re unable to do anything. Others feel the 26 Your Autism
Clothing can feel scratchy and irritating to some people
need to engross themselves in an activity to take their mind off it. Parents of children with sensory difficulties often find their child will wear the same clothes over and over again – mainly because these are the ones in which they feel most comfortable, but also because this has something to do with routine. “My daughter, Kirsty, constantly wears the same grey fleece,” says Meta Auden, who set up Spectra Sensory Clothing as a result of her daughter’s sensory sensitivity. “So I bought her a fleece in a different colour. I don’t wear fleeces, and I did not realise that the inside of every fleece was different; some she could
Touch sensitivity
I did not realise that the inside of every fleece was different; some she could wear, and some not wear, and some not. She never told me that the wardrobe full of clothes that I had bought for her would never be worn. Knowing the clothes she didn’t like was a real benefit, but did not help much in finding things she would like. So I decided that it was about time there was an autism-friendly clothing range.” Adults with sensory issues usually get into
a pattern of finding what works for them, and knowing the textures or fabrics to avoid. “When buying clothes, I usually run the back of my hand across the material to test its ‘scratchiness’. If it is too rough, then I won’t buy it. If in doubt, I try it on first,” says Mike. “I can wear jackets made of tweed or wool, as they aren’t directly next to my skin, but if I have to wear a wool suit, then I also have to wear cotton long johns to keep the suit material away from my legs. “Luckily, my employer has a smart/casual dress policy, which allows me to wear cotton chinos. At home, I wear cotton shirts, polo shirts and jeans.” School uniform can often be a problem for
Meta’s daughter Kirsty
Meta Auden
“Greens remind me of the sea and trees” National Autistic Society member Andrea explains what fabrics and colours work best for her “The clothing most comfortable for me is made from cotton, with some stretch or give, but not too nylon or elastic. I don’t like the feel of wool or nylon. I also don’t like waistbands or belts, as these can irritate my skin, and make me feel trapped. “In terms of colours, I like certain
light greys. I have two casual, slightly stretchy, grey lounge suits – they are warm but lightweight, and I wear them a lot, both indoors and out. The tops have a hood, which can be useful and protective. “I like wearing navy, as it can look smart without being intrusive, while
some greens – and colours on the blue/green spectrum – can be calming. They remind me of the sea and trees. “Orange can be a refreshing colour, but I’m not good with red – it can be a very disturbing colour for me. I’m also not keen on white, bright blue or acid greens. Black is OK at times, and purple occasionally.”
Winter 2019 27
Touch sensitivity
labels are hidden in pockets or are easily removable. There’s also a variety of tieless shoelaces for both adults and children, designed for those who find lacing up hard. And when it comes to Christmas wear, the company has a range of autism-friendly festive jumpers that are not scratchy, and that use a heat press so the wearer can’t feel the motif on the front through the jumper. M&S has an easy-dressing range for children that need extra help, such as pieces that are easy to get on and are gentle on sensitive skin. The school uniform features shirts with Velcro fastenings to help children dress within seconds, and has no fiddly zips or buttons. Itchy labels have been removed, too. JettProof is another company founded by parents of an autistic child, which sells underwear for special-needs children and adults. It features a range of pieces – such as sensory vests, seamless socks, shorts and leggings – that can be worn under regular clothes and are made from light, breathable, sensory fabric. According to the founders, children benefit from the ‘calming’ underwear, which can be worn all year round and provides sensory compression to the muscles. Other options that people can find useful are weighted fleeces and gilets. The extra weight can have a calming effect on the body’s proprioceptive system (proprioception is the sense of self-movement and body position) and they can help prevent children from fidgeting in the classroom. Some people also use them to help prevent meltdowns when they are subjected to a lot of sensory input.
What does it feel like? Below are some of the effects a person with touch sensitivity might experience: UNDERSENSITIVE l Holds others tightly l Has a high pain threshold l May be unable to feel food in the mouth l May self-harm l Enjoys heavy objects such as weighted blankets on top of them l Smears substances such as paint and faeces as enjoys the texture l Chews on things, including clothing and inedible objects OVERSENSITIVE l Touch can be painful and uncomfortable l Dislikes having anything on hands or feet l Difficulties brushing and washing hair because head is sensitive l May find many food textures uncomfortable l Only tolerates certain types of clothing or textures
children, as there’s not a huge amount of choice when it comes to fabrics in school colours, while seams and labels can be irritating or even intolerable. However, various online retailers offer solutions that may help – see box, right.
What to wear
So what clothing options are there for children and adults with sensory issues? Spectra Sensory Clothing has a range of clothing, from school uniforms made with soft fabrics, flat seams and minimal buttons to loose-fitting t-shirts, seamless socks and tights. It features tops that can be worn either way round, with no back or front, while 28 Your Autism
Find out more: www.autism.org.uk/ sensory
Find out more
You can search for and buy sensory clothing from these companies online: www.marksandspencer.com/l/kids/ easy-dressing www.spectrasensoryclothing.co.uk/ autistic-clothing www.jettproof.co.uk
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
How do you get your autistic children to brush their teeth? My daughter is really struggling and I’m running out of ideas to try to get her to do it. Anonymous, via our online community
Ask your child what they For expert advice dislike about brushing their and information on teeth. My daughter felt that any autism-related issues, call our mint toothpaste burnt her mouth, so we Autism Helpline on changed to a gentle, lemon toothpaste 0808 800 4104 and that helped enormously. My daughter also disliked the bright lighting in the bathroom and the sound of running water – so we arranged it so she can now take her toothbrush and toothpaste into another room and spit out into a cup. Giving her more control and not forcing her to stay in an overloading environment has really long). The biggest thing was not to make a huge issue helped her brush her teeth more often. Nicky out of it. I also encouraged him to watch how I brushed my teeth. Ruth My son struggled with brushing his teeth. I tried many techniques including: using a timer so he could see how long he had to complete the task; a reward chart; Nicky wins a copy of Simple Autism Strategies for Home trying different brushes with different textures (soft), and School by Sarah Cobbe. electric, favourite characters (Spiderman, Star Wars); and offering to do one minute for him and he does the ● See more readers’ answers at rest (various alternatives of who helps and for how www.autism.org.uk/digitalyam
Help me next!
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 30 Your Autism
Send us your solutions for a chance to win a copy of The Little Book of Autism FAQs: How to talk with your child about their diagnosis and other conversations by Davida Hartman.
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 / ImageSource
A
Advice
Helping your autistic grandchild When Martina Mercer’s eldest son, Mitchell, was diagnosed as autistic aged 10, there was a divide in how the family reacted. While Martina and her son felt relief – because it explained why he was struggling with everyday tasks – one set of grandparents refused to accept it. “In their view, there was no such
32 Your Autism
thing as autism, only naughty children,” Martina explains. “Mitchell was labelled as ‘spoilt’, and I was a mother being too soft on my child. They believed a firm hand was all that was needed.” The result was Martina didn’t feel she could let them babysit, because the family’s carefully crafted routine would
be ignored, which could cause repercussions for days afterwards. Gradually, the grandparents started to change their minds after seeing how the strategies the family were using were helping Mitchell to thrive, and they began to find out more about autism. Martina says: “I think, initially, the grandparents
iStock .com / monkeybusinessimages
Being a grandparent can be one of life’s greatest joys, but if your grandchild is autistic, you may have questions about what they need from you. Louise Parfitt reports
Advice
4. Coping with meltdowns
were in denial, because they didn’t want to believe there was anything ‘wrong’ with their grandchild. In time, they saw it wasn’t a negative diagnosis – instead it was positive, as it gave us a lot of the answers we were searching for, and better techniques for raising him.”
Tips for a contented grandchild 1. All ears Looking after any child is immensely gratifying, but it also can be hard work. Caring for an autistic child has its own set of challenges and rewards. The best thing you can do is listen to the parents without being judgemental or critical, and support their decisions. “Your child may have coping strategies in place and solutions for every situation, so follow the rules and be united,” Martina says. “You will enjoy your time with your grandchild much more if you keep things consistent.” “I always knew Mitchell was special, but I had no experience of autism,” explains Mitchell’s grandmother Sylvia James. “Once my daughter explained it to me, it was easy to see the traits. There are a lot of recommendations to follow when dealing with Mitchell’s anxiety and the unique way in which his brain works, and I’m forever learning more to help him the best I can.”
2. Ask questions
How people experience autism varies greatly, so ask those closest to your grandchild to tell you what they like and dislike, how they prefer to communicate, and what to avoid. Read as much as you can: the National Autistic Society has a wide range of accessible information online, as well as a helpline – go to www.autism.org.uk/helplines for more details.
Martina (second right) and her family
It is important to respect the child’s need for sameness; it is driven by a desire to avoid overwhelming anxiety 3. Routine, routine, routine
Knowing when and how things are going to happen can be really important in helping your grandchild feel safe, so try to follow the child’s normal routine as much as possible. “It is important to respect the child’s need for sameness; it is driven by a desire to avoid overwhelming anxiety and fear of new situations, unknown people, or demands they do not fully understand,” explains Dr Dimitrios Paschos, consultant psychiatrist at Re:Cognition Health. “Be aware of your grandchild’s comfort zone when it comes to new experiences. With that in mind, you can slowly and mindfully offer more variety – for example, you could introduce a new experience within the existing routine – but do not put any pressure on them to accept it.”
Meltdowns occur when an autistic person feels overwhelmed – they are an involuntary response to sensory, emotional and information overload. Your grandchild may cry, lash out, or become withdrawn. Parents can advise on how to cope if one occurs, but how you react will depend on where you are because you need to ensure the safety of all concerned. If you are near a road, you may have to hold your grandchild to prevent them running into danger. If they drop to the floor, put something under their head in case they bang it. Paschos advises giving time and space if you can, but if you need to move, explain what you are going to do and why, and stick to your word. “Talk in a calm and confident manner; never raise your voice as that will only increase their stress levels,” he says. “Offer something interesting when they seem calmer. If they reject it, try again a bit later. Remember, every meltdown has an end.”
5. Be yourself
Sometimes grandparents feel worried about saying or doing the wrong thing, meaning they interact less with their autistic grandchild. This is detrimental for everyone. “Grandparents should be themselves and show their love and affection, but respect the child’s preferences in terms of touch, how much speech to use, and the best time to interact,” Paschos advises. Martina says that by not viewing autism negatively and learning new ways to connect with your grandchild, you’ll enjoy your time together much more. “You will discover a lot of wondrous things about your grandchild that will blow your mind.” Winter 2019 33
iStock .com / georgeclerk
Advice
Why dating can be difficult
Dating can feel complicated, but there are many strategies to help, as our Helpline Adviser Vivien explains Dating and relationships can be tricky, complicated, confusing, unpredictable, wonderful, stressful and amazing. Many people may feel perplexed with the unspoken rules, expectations and boundaries that can come with romantic relationships. As Marc Segar, autistic man and writer of Coping: A Survival Guide for People with Asperger 36 Your Autism
Syndrome, said: “Autistic people have to understand scientifically what non-autistic people already understand instinctively.”
Using technology
With the introduction of dating apps and social media, some might say that dating is different than in previous generations. Meeting
a potential date over the internet comes with its own pros and cons. For instance, you may find it easier to communicate via a written format, such as text and instant messaging. This can help you to feel more comfortable when interacting. Communicating with a potential date via an app or text can give you processing time to read what has been said and take in the information, and offers a longer response time. It can also give you the chance to get to know someone before meeting them, which can reduce worry over what to talk about when meeting face to face. Using technology to date can be risky, however. People are not always who they say they are. If you arrange to meet someone via an
Advice
app, make sure you tell someone you trust where you are going to be and who you are meeting. It can be safer to take someone with you to meet a potential date. On apps and social media, it can be difficult to decipher others’ intentions. It is not always easy to tell when someone is genuinely your friend or has malicious intentions. You should never give out personal information such as your bank details and address, or send money or personal pictures to someone you have not met or established a trusting relationship with.
Strategies to help
Regardless of what is shown in books, films and on TV, there is no definite way to date. So if something isn’t going how you planned it, or it isn’t how you have read or watched it to be, that doesn’t necessarily mean it is going wrong. Dating and happy relationships
Establishing boundaries can be very tricky as they change all the time depending on who you are with
are so dependent on what works for the people involved and their preferences. One aspect of dating that can present a number of challenges, especially when two people first meet, can be the notion of acceptable and comfortable boundaries. Establishing boundaries
Alex’s story “When it comes to dating, I am always quite nervous, as I find it hard to read people’s facial expressions and body language. If someone did like me, I would be none the wiser unless they actually told me this. In fact, dating is probably the only thing that I ever get nervous about. My first date on The Undateables went really well and, as soon as we met, I felt at ease. I did not know what to expect from a date, or what it would be like, but I found it to be a very
can be very tricky, as they change all the time depending on who you are with and the context of the situation. It can be challenging to read other people’s intentions and feelings, which can make it difficult to know if the other person is interested or uninterested in pursuing a romantic relationship. Some people find physical contact intimidating and uncomfortable, especially if they do not want to pursue a romantic connection with the other person. Avoid physical contact, such as kissing and sex, until you are sure that the other person has consented to this. If you are interested in a relationship with another person, it is best to spend some time in each other’s company first, to establish whether or not this is
pleasant experience. We have stayed in touch, but have decided to just be friends. However, it has definitely left me much more confident for any future dates. My advice to anyone going on a first date would be to just enjoy it. I think dating is something that most people would find difficult, but it is really just two people meeting each other for a meal, a drink or a game of bowling.” Alex Manners, www.thealexmanners.com
something you both want to do. It can be difficult to decipher if another person is interested in you romantically – sometimes the only way to know is to ask. However, it might be best not to ask straight away, as the other person might not yet be sure of the answer. There is no set way to dress for
Winter 2019 37
Advice
a date. It depends on where you are going or what kind of activity you are doing. Some people use aftershave or perfume to smell nice, which can be great; however, this can be overpowering to people with sensory sensitivities. You should bring as much money as you need to take part in the planned activity, plus a little extra for emergencies. There is no rule on who must pay for the date; some people are happy to pay for themselves and their date, which is OK – but this does not mean you must always pay for them. Others are happy to pay for themselves independently.
Small talk
You may want some practical support with social skills. There are social groups in the UK, many of which offer training with social skills. You can also ask for social skills advice from a trusted family member or friend – role-playing social situations can be useful to practise different scenarios. As it can be difficult to know what to talk about during a date, you could write down a list of appropriate topics to discuss before the date. These can include the weather, films and music. You could ask your date questions about themselves, which will show your interest in what’s important to them. You might also want
Read more
to ask them about their interests and hobbies. Some questions can cause offence to others, however; avoid asking the other person anything too personal, such as about their weight. If you have an interest, you could share this with the other person – they might have a similar one. If, when you are talking about your pastime, you notice the other person seems distracted – such as yawning or turning away – you could clarify that this is one of your hobbies, then ask what they are interested in. You could ask if they would like to know more about your pastime, or if they would like to talk about something different.
Location and environment
Remember, there are no rules about where a date can take place. It does not have to be in a busy shopping centre or a loud restaurant. You can choose somewhere that might suit you both – this could be a walk in a local park or a visit to an attraction or museum. If you have decided to visit somewhere you have not been before, and it’s creating some anxiety, think about visiting before the date with a friend or family member, to help familiarise yourself with the surroundings. It might be helpful to visit the location’s website, too,
to look at photos of the setting. It can help to research the journey you’ll take before the date. This will allow you to familiarise yourself with possible alternative routes if there are bus or train delays. Again, you could take someone with you to help you with the journey, either before the date or during the date, for support. Use all your usual strategies to help plan for the date and assist with processing and managing sensory information. That way, you can feel as comfortable and relaxed as possible, and enjoy your date.
You can find lots of advice about dating and relationships on our online community at community.autism.org.uk Is your partner autistic? Take a look at our information at www.autism.org.uk/digitalyam Find out about social groups and social skills groups in our Autism Services Directory on our website. Your local National Autistic Society branch may run social groups or be aware of local groups. Let us know if these strategies help you at YourAutismMag@nas.org.uk
Winter 2019 39
Advent of Change Support the National Autistic Society and 23 other charities with Advent of Change this year. We’re featuring on The Premium Advent Calendar which you can pick up from John Lewis stores and adventofchange.com.
NAS_AdventofChange_86.5x107mm.indd 1
22/10/2019 10:30
Meet the team
“I’ve found much greater fulfilment as a support worker” With the festive season approaching, we spoke to Daniel Skews, a support worker at our Somerset Centre. The centre hosts a Christmas market every December, and offers a range of creative projects throughout the year What does your job at the Somerset Centre involve? I’ve worked here since 2015 – I develop arts and crafts, assessing each person’s skills, and breaking the activities into manageable parts. How did you get involved with support work? I was in the building trade for more than 20 years, but was diagnosed with Crohn’s disease and couldn’t work for a year. Despite my health improving, I couldn’t return to such a physically demanding job. I have found much greater fulfilment as a support worker. Do you have a connection to autism? My younger brother was diagnosed with Asperger’s at 16. He is amazing, and has just passed his first year of university, studying illustration. What do you enjoy most about your job? Building relationships – I try to introduce interesting projects within their abilities. Fluid art is popular. Individuals choose colours, measure the paint into pots, pour it onto a canvas and move the canvas about to
create a picture. We even entered a national art contest and won fourth prize!
What are some of the challenges? Everyone I work with has different challenges, so preparation in advance is essential, but finding time is hard. What activities does the Somerset Centre offer? We have been busy making soaps, candles, leather crafts and fluid art products, which we sell. We are lucky to have a wellequipped woodwork workshop. We also have a horticultural training unit, where residents produce beautiful hanging baskets. Therapeutic activities include group drumming; ball skills and a parachute for social skills; relaxation sessions; yoga; and gong therapy (a type of sound therapy). We also run a drama session. How do you celebrate Christmas at the centre? We have a Christmas market, where residents exchange tokens for various goodies. There is live music and carol singing, and we have a visit from the man with the red suit, bearing gifts. To learn more about becoming a support worker, visit www.autism.org.uk/ supportworker
Winter 2019 41
Notebook
Everything you need to read, do or see
Uncomfortable Labels
AUTHOR: Laura Kate Dale PUBLISHER: Jessica Kingsley Publishers PRICE: £12.99 VERDICT: Powerful insights into being a transgender, gay autistic woman Laura Dale shares her experience of growing up as a transgender, gay, autistic woman in this brave and insightful autobiography. Dale explores the concept of labels and what it means to be both transgender and autistic. The writing is simple yet engaging, addressing a range of subjects, from gender identity to Pokémon. The book contains topics that readers may find distressing, including sexual assault, bullying and substance abuse. Hermione Cameron, Content Officer, National Autistic Society
Become a reviewer
Would you like to join our reviewer list for books and products? Email us at YourAutismMag@nas.org.uk
experienced trying to get diagnoses, information, help and support. Some of the boys have other difficulties such as ADHD and Foetal Alcohol Syndrome. Mostly, this is a story of the unnecessary struggles that this family had to go through. The book brought back many painful memories for me. Julie shares her experiences with the UK education system and how it so often let her boys down at best and, at worst, contributed to meltdowns and mental health problems, not to mention a great deal of pain and stress for the whole family. Sadly, I can relate to many of these experiences from my own journey of trying to raise healthy, neurodiverse children in an education system so rigid and lacking in understanding. It is impossible not to feel for this family, as well as to celebrate their tenacity and love for their children. I think this book would make useful reading for anyone working with children in the education system and health services. There is much that can be learned from this family’s story because, sadly, it is not an isolated event. Vanessa Hughes, Your Autism magazine reader
Instructions Not Supplied
AUTHOR: Julie Otto PUBLISHER: Practical Inspiration Publishing PRICE: £9.48 VERDICT: Highly relatable account, particularly about school This book is about the experiences of the author and her husband of the process of adoption in the UK, as well as raising her adopted three boys who are on the autism spectrum. Julie explains the sometimes harrowing processes that they had to go through with adoption agencies – the good and the bad – as well as the difficulties they
Giveaways
We have two copies of Uncomfortable Labels by Laura Kate Dale to give away to members. For a chance of winning a book, send your name by email to YourAutismMag@nas.org.uk by 30 December, quoting ‘Uncomfortable Labels’. The winners will be announced in the next issue. The winners of last issue’s competition are Fiona Jones and Lesley Hill. They each get a copy of “That’s not right!” My life living with Asperger’s by Alex Manners. Congratulations!
Winter 2019 43
Notebook
A Guide to Programs for Parenting Children with Autism Spectrum Disorder, Intellectual Disabilities or Developmental Disabilities reading for professionals supporting families. This book could make a huge difference to parental stress by giving techniques to use with their child, and helping them to understand their child’s difficulties. It’s extremely useful and important, considering the evidence for early intervention and the high level of parental stress that exists. The methods are evidence-based and scientifically grounded. Maria Mufti, Your Autism magazine reader
EDITED BY: Kate Guastaferro and John R Lutzker PUBLISHER: Jessica Kingsley Publishers PRICE: £50, £32 on Kindle VERDICT: Essential reading for professionals supporting families This is such a refreshing book, packed with eight types of parent training programmes. It should be essential
Our six favourite… gadgets to give for Christmas
Chosen by James Sinclair
1
Sega Home Planetarium
Is there anything a night sky projector can’t do? They’re calming, they’re informative, and this Home Original looks like the Death Star from Star Wars. What more could you want? Available from www.amazon.co.uk, £109.
2
Lumie Bodyclock Shine 300
Why ruin the little shut eye autistic people get with a shrill alarm from your smartphone? Instead,
invest in a Lumie Bodyclock and gently wake up to a slowly simulated sunrise, after being cradled by gentle white noise. Available from John Lewis, £71.99.
3
Minilop orbiter fidget spinner
There are fidget spinners, and then there is the orbiter fidget spinner. It’s a magnetic ball and cap, which must be seen in all its stress-relieving, anxiety-evaporating and soothing glory. Available from www.amazon. co.uk, £13.99.
4
HoMedics Percussion deep tissue massager
Hypersensitivity isn’t always a negative as, when it comes to a deep tissue massage, tranquility is guaranteed. This gadget makes for reliable relaxation in the aftermath of a meltdown. Available from Argos, £34.99.
5
Oculus Go VR headset
Every hour is Autism Hour with a home VR experience. From the bottom of the Seven Seas
to the highest of mountain peaks, leave your anxieties outside and let the adventure come to you. Available from Argos, £199.
6
Nintendo Switch Lite
The go-to gift for Christmas, this is a portable gaming revolution that includes a brilliant scheduling feature so that loved ones can build play time around an autistic person’s routine (and not vice versa). Available from Currys, £199.
Read more about James at autisticandunapologetic.com Do you have an idea for our six favourites section? Email it to YourAutismMag@nas.org.uk
Winter 2019 45
Snapshot
I’m a… powerlifter
Meet Esther Whitney, autistic woman and competitionwinning powerlifter. Esther took up powerlifting to help manage her self-harm. Despite being ‘the least sporty person that ever existed’, she discovered she had a knack for the sport and has been powerlifting ever since Esther started weightlifting in 2016. At the time, she was really struggling. Although she grew up in a supportive family, Esther was unhappy as a child, telling us: “I was confused by life, people, family, school and church. I often felt that I couldn’t cope and hated life.” This resulted in her self-harming as a way of coping with complex emotions, sensory processing and extreme anxiety. As an alternative, Esther’s psychologist encouraged her to take up a high-intensity sport, and she decided to try her hand at weightlifting. Going to the gym was an intimidating experience. Esther was selfconscious about exercising in front of others and felt like “a floundering beached whale” among “Greek gods”. As time went on, Esther became less self-conscious. She progressed from being barely able to lift 5kg to becoming a powerlifter. Going to the gym had its challenges. As a woman in a male-dominated sport,
Read more
Esther often felt intimidated by the male weightlifters, but this has changed since she began lifting heavier weights than most men. In addition, the sensory overload of the gym environment – constantly being bombarded by loud music and strong smells – was overwhelming. Determined to improve her dependence on self-harm, Esther carried on training, and this year took part in the British Powerlifting Association West Midlands Summer Championships, which she won. She hopes to compete in next year’s event to raise money for the National Autistic Society and increase awareness of autism and self-harm. Esther says: “Since taking up weightlifting, I have not self-harmed. This doesn’t mean I don’t have urges to self-harm, but weightlifting enables me to resist them.” We would like to thank Esther for sharing her story with us. We hope she will continue to go from strength to strength in her chosen sport.
Mental health and wellbeing is a key theme of our Autism Professionals Conference on 27-28 February 2020 in Birmingham. There are reduced entry rates available for autistic people, parents and carers. Find out more at www.autism.org.uk/conferences Are you doing something amazing that you’d like to tell readers about? Let us know by emailing YourAutismMag@nas.org.uk
46 Your Autism
£5
of all ti cket f su 30 N ovem ntil ber
Will you take to the streets to raise awareness of autism? Spectrum Night Walks is our flagship event during World Autism Awareness Week. We walk routes of either 5, 10 or 15km together around the city, wearing our boldest colours. Saturday 4 April 2020, 8pm London, Manchester or Glasgow Early bird tickets £15 for adults, £10 for children, plus sponsorship
www.autism.org.uk/spectrumnightwalks